Article

A Father's Journey

The following is an edited version of Jani’s story as told by her father, Michael Schofield.

January First

I fell in love with January the first time I saw her, although I didn’t even know she was January then. It was Susan’s first ultrasound at 10 weeks. Jani was only a head and four stubby limbs, but the ultrasound found her right away, floating right in the middle, already the largest thing in our life at an inch long.

The Schofield FamilyThe next time we saw her was at 25 weeks. The obstetrician commented on how Jani was face on to the ultrasound, as if she could hear it, hear us, which we were told was unusual. Typically, we were told, the fetus often hides, but Jani was right there. Her eyes were open. We watched her blink.

She was awake even then, and she would stay awake. She moved constantly, so much so that when on Memorial Day, 2002 Susan did not feel her move for 90 minutes, she panicked and broke down; terrified that Jani had died inside. She cried with relief when Jani finally moved. She had just been asleep.

She was born on August 8th, 2002 at 1:06am. That is still one of the happiest moments of my life. I can still remember how it felt to hold my child for the first time and the disbelief that I had anything to do with her creation. She made me forget every worry I had felt in advance of her birth.  I forgot about the claim that you would spend a million dollars getting a child to adulthood. I forgot about private schools and college funds. It was a moment of pure simplicity. That was Jani’s first gift to me.

Ninety minutes after birth, lying swaddled in Susan’s arms, her eyes were open and she seemed to follow me and the camcorder around the room, although the nurse assured us newborn babies couldn’t focus.

The nurses reported Jani was the best-behaved newborn in the nursery. While the other newborns screamed and cried, Jani seemed content.

On August 10th, we brought her home. The first week passed. Everything seemed normal. Jani slept, drank from her bottle, and watched. Susan and I looked forward to the future, relieved that everything was working out.

On the seventh day of her life, Jani awoke, but this time she did not go back to sleep. She screamed. Constantly. We fed her. We changed her. We held her. We played with her. Nothing worked.

When Jani would fall asleep, we would put her down in the crib and run to our bed to sleep while she did. But just as we started to fall asleep, we heard Jani start to howl.

 


From that point on, Jani would sleep in bursts of twenty to thirty minutes at a time, 24 hours a day. At three weeks old, she was sleeping a total of three to four hours a day. We took her to our pediatrician to get her checked out. Her physical health was fine. No colic. Jani was meeting her developmental markers. Nothing was wrong. The pediatrician wrote told us “some kids are just more active” and wrote down “irregular sleep patterns.”

Susan and I went home with Jani. I dropped out of college because I couldn’t function, let alone study. It became pointless to put Jani down when she fell asleep because she would wake up again minutes later. People gave us all sorts of advice. We were told to ‘let her cry it out.’ We tried that once. One hour later, Jani was still screaming, so we picked her up and never did that again.

Life became a process of getting from one day to the next. We began to work “shifts” with Jani, five hours on and five hours off, in order to give each other some sleep.

Jani and the goats.One day, Susan was holding a screaming Jani and had to go out to get the mail. When she went outside, Jani stopped screaming. When she went back inside, Jani started again. A few more times experimenting with going outside and Susan had figured out what our pediatrician could not; the only thing that stopped Jani from screaming was stimulation.

We learned that the more stimulation Jani got, the happier she was. Taking Jani to the mall and letting her see the crowds bought us quiet, if not sleep. Unlike most other babies, it was impossible to over stimulate her. She was not afraid of large crowds. In fact, she thrived on them. Susan and I spent our time with Jani desperately trying to find the largest group of people we could. We took her to the mall, to play areas, the zoo on the weekend days when it was the most crowded, Ikea. We squeezed ourselves into crowded elevators.

And we did without each other, because by now the only time Susan and I saw each other was to hand Jani off after our “shift” was done.

Susan worked overnights and would leave for work at 10pm. I would sit up all night with Jani, holding her while she slept fitfully in my arms. At 9:30, Susan came home from work but there was no rest for her. She took Jani and I went to bed until 2:30pm, when I would take Jani back so Susan could get a few hours.

We met friends for one activity, like the zoo or a play area. But when the play date was done and they went home, we went on to the next activity. 12-14 hours a day, every day.  We had to string four or five major activities together to get any sleep at night.

By January 2003, Susan told her boss she could no longer work full-time. We were barely functioning. Even when Jani got sick, she would not slow down and sleep, and neither could we, sick or not. We discovered a play area in the Burbank Mall for children five and under. It was closed off so we could put Jani down there and collapse on the floor next to her, knowing she was safe but praying the staff wouldn’t realize Jani was sick and kick us out because we had no energy left to find anything else.

 


People were drawn to Jani and her giant blue eyes that seemed to look into their souls. Being out all the time, we met so many parents and so many kids, but none of them were like ours. None of them slept as little as Jani did.

When Jani was six months old, we went to visit family in San Francisco. It was the Chinese New Year and we were staying near Chinatown. The streets were filled with so many people I had to keep Jani up on my shoulders to keep her from being crushed. She loved it, watching the sea of humanity move around her. That night, she slept for seven hours straight; the first time in her life she had ever done that.

At five months, Jani would press whatever button on a toy you told her to push. She began to talk at 8 months. At 13 months she knew the alphabet and her numbers to ten. By 18 months, she was speaking in grammatically correct full sentences.

Susan, Jani & MichaelWe thought we understood then. Jani was a genius. That was why she needed constant stimulation and never slept. We drove ourselves day after day, believing that one day Jani would be able to stimulate herself and this would end.

At two years old, Jani was precocious and adorable. She would chat up anybody and everybody. She had no fear of strangers or climbing six feet above the ground on the jungle gym. She was constantly on the move.

Shortly before her third birthday, Jani started to play with “Low,” an imaginary cat. Kids have imaginary friends all the time, so we thought nothing of it. She would say “Come on, Low! Let’s go play!” and run across the room. She talked with “Low” all the time.

By this time Jani could count to one thousand, so we didn’t find it strange when another imaginary friend appeared named “400”, who Jani described as an orange tabby cat.

But then Jani began to change. She started changing her name, often several times a day. She became Wednesday, then Hot Dog, then Blue Eyed Tree Frog. We didn’t find this strange, either. Kids often change their names. But we were growing uneasy now because when somebody called Jani by her name, she would scream in a rage at them: I’M NOT JANUARY! She started to withdraw from the other kids she had once loved playing with, spending more of her time alone with her imaginary friends. The happy, smiling girl started to fade, replaced by one who seemed angry at everything and everybody.

By four years old, people were starting to suggest that Jani might be autistic or have Asperger’s Syndrome. So we had her tested. She didn’t, but she did have a 146 IQ. Once again, we thought that Jani was just brilliant, if a little eccentric. She loved to learn. Whatever you cared to teach her, she would learn and she could retain anything. She learned the periodic table (her favorite element is Tungsten). She learned about evolution. She loved science and math. We started making plans to put her in a gifted school.

 


But by now, Jani was starting to scream at people. A high-pitched, excruciating and ear-shattering scream when she didn’t get what she wanted. And what did she want? She wanted to work. She would run behind the counters of stores and restaurants, laughing, saying she was sixteen and wanted to work.

By now, Low and 400 had been joined by hundreds of other imaginary friends, who she normally named after numbers or days of the week. She refused to play with other kids, calling them “thirteens” and saying she was an “eighteen.” Her number kept climbing, into the hundreds and eventually into the thousands. She said she wanted other kids “like her.” We tried to find them, but no matter how smart or verbal the other child was, Jani would always come up with an excuse as to why she couldn’t play with them.

A new arrival.Still, we reassured ourselves, she’s a genius. This is just a phase. She will grow out of it.

By four and a half, Jani was so lonely and getting into so much trouble everywhere she went she asked for a sibling, which is how Bodhi came into existence.

Then the violence began.

It began right around the time Susan got pregnant. Due to her pregnancy, she was unable to take Jani all over the city for 12-14 hours a day anymore. I had finished my graduate degree and was working. At first it just seemed like Jani was throwing a severe tantrum, except that she hit at us with closed fists, kicked us, scratched and bit until she drew blood. These rages would come out of nowhere and pass just as quickly. Jani would go from sweet and loving to violent and back to sweet and loving within fifteen minutes.

Those around us, even those within our families, thought Jani was a brat and that we just weren’t disciplining her. We were. But it didn’t matter. Jani’s violence seemed to come without warning and go as quickly as it went.

When Bodhi was born, my parents came to take Jani so I could be with Susan. Jani was so violent that after a day they couldn’t take it any more. I had to bring Jani with me to the hospital, where she ran into other people’s rooms and attacked Susan and myself, as well as the nurses who tried to stop her.

Whenever Bodhi would cry, Jani would become violent, but it wasn’t an emotional rage. Her voice went flat and her demeanor remained calm. She would attack us, saying “I am hitting you, Mommy (or Daddy). I’m not hitting Bodhi.”

For the first time, we sought out a therapist, who upon seeing Jani once and her unprovoked violence sent us to a psychiatrist. The psychiatrist suspected bipolar and put her on medication, but it had no affect.

By this time we could no longer travel anywhere as a family. We had to take two cars to prevent Jani from screaming at Bodhi when he would cry. One parent took Jani and one took Bodhi. While driving, Jani would unbuckle herself and reach up and shift the car into neutral on the freeway. She took off her shoes and threw them at us while we drove.

 


We were referred to a neurologist, but Jani could not sit still for the EEG. The neurologist suspected ADHD, so we tried medications for that, but these only made Jani worse, making her high, followed by a violent emotional crash. Medication after medication was tried. None of them worked and most caused side effects, so we would quickly pull her off even though the psychiatrist wanted to keep upping the doses. We went to therapist after therapist. Each told us something different. Most told us we just needed to be “stricter” with Jani.

By February 2008 the violence was so bad that we tried to get her hospitalized, but every hospital we called told us they either could not take a child so young or that they had no beds available. After a day of constant hitting and kicking, in desperation, Susan took Jani to BHC Alhambra in Rosemead, CA, the only child psychiatric inpatient hospital that our insurance would accept. But even they would not take her until Susan called Jani “January” and the admissions person saw Jani attack Susan.

Jani and SusanJani spent three weeks at BHC Alhambra. The doctor there never communicated with Jani’s primary psychiatrist and put her on all the same drugs that had already been tried and discarded. To make matters worse, BHC Alhambra, like most facilities, was set up for teenagers, not children, and so any children that came in were put in with adolescents.

Yet, Jani never cried for us to take her out. In fact, she never expressed any desire to leave. She only wanted us to visit and bring food.  For the first time since she was two, she seemed genuinely happy, even though she was surrounded by teenagers who taught her things we had strived to protect her from.

Jani wasn’t stabilizing. The staff at Alhambra kept telling us she was fine, yet by the end of the second week, Jani was spending most of her time in the “time out room” fast asleep after being injected with Thorazine. The staff told us nothing. We were terrified for Jani’s safety. She was rooming with a girl who had a history of fondling.  The other kids would tell us that Jani would climb the curtains and jump off furniture, which the staff would deny, yet they never gave us a straight answer about why Jani needed constant PRN shots of Thorazine.

 


Yet when she would wake up from the Thorazine injections, she was the closest to the daughter we remembered. She would talk to us about herself and not about her imaginary friends.

We answered the same questions for the nurses, doctors, and social workers over and over again. Were there any complications during pregnancy or birth? No. Has Jani ever been physically or sexually abused? No.

In desperation, I considered sending Susan and Bodhi to live with Susan’s parents. I didn’t know if Jani could safely live with Bodhi. We didn’t want him to grow up afraid of his sister. We didn’t want him to grow up spending every day visiting his sister in the “psych” ward. Susan and I could take the violence. He couldn’t.

Bodhi and JaniWe could not understand how our five-year-old daughter could be like this. We looked everywhere for answers but nobody had ever seen a case like this, even the doctors.

We visited Jani everyday in the hospital, taking Bodhi with us because we had no family in the area to watch him. Jani refused to brush her teeth, hair, or take a bath or shower on her own, so we had to do to make sure it was done. We alternated this, but on the night when it was my turn to give Jani a shower one of the nurses found this strange.

Later that night the Department of Child and Family Services knocked on our door with two Sheriff’s Deputies.  A staff member of BHC Alhambra had accused me of molestation. Jani had not confirmed the accusation, so I was simply asked to cooperate with their investigation and allow Jani to be examined, which of course I did. The investigation was closed, the accusation ruled unfounded.

I wished, and still wish, the cause of Jani’s behavior had been that simple. The worst part of it was not the lack of sleep, the people thinking we were raising a brat, the screaming, the random violence, or even being suspected of being a child abuser. The worst part was the fear that we were losing our daughter forever, losing the bright and happy child she had been, and we were powerless to stop it.

 


January Present

On Monday, January 12th, 2009, paramedics were called to the school when Jani was brought to the nurse’s office, drooling and unable to speak. It turned out she had developed Dystonia, which is when the muscles in her body begin to lock up. It is a side affect of Haldol, which she had been prescribed after going into a protracted psychotic state for three weeks, where she spent almost all her time in her imaginary world, interacting with us only to eat. During that time, she tried to jump out of her second story bedroom window.  By this time, her psychiatrist, having seen her for more than a year, had come to believe that Jani’s psychosis was not caused by her emotional state (bipolar) but that her emotional state was caused by near constant psychosis. Her diagnosis was now psychosis NOS (not otherwise specified). Jani had finally confessed to us that 400 the Cat would scratch her unless she hit and that the rats were afraid of Bodhi and wanted her to hit him to drive him away. It was becoming clear that Jani did not control her imagination. It controlled her. What we thought were just hundreds of imaginary friends were actually command hallucinations. A year before, during her first hospitalization at BHC Alhambra, Jani had tried to tell the doctor and staff that the rats and cats were real to her, but they refused to believe her, because of the idea that five year old’s don’t have a firm grasp on reality anyway. But Jani knew. But they wouldn’t listen to her.

 

Birthday wishes...

When Jani went to the emergency room, we were terrified, even though the ER doctor assured us Dystonia was not fatal and was easily treated with Benadryl. We had had enough and were terrified our daughter was either going to kill herself (at four she had started asking at what height somebody would die if they fell but I didn’t put it together even when Jani started hanging off the third floor balcony of our apartment) or that her body would die from the medications. We wanted her hospitalized. We wanted somebody to figure this out. The ER doctor wanted her hospitalized, but the local hospital had no “psych” ward and the social worker was unable to get Jani placed (she was told there were no beds available).

Yet, Jani had been getting better on the Haldol. The violence had stopped and she seemed more like her happy self. But we had no choice but to lower the Haldol because of the side effects. Still, Jani seemed fine when I dropped her off at school on Friday, January 16th, 2009.

About an hour into class, she started screaming that she wanted to see Bodhi. She then ran from the classroom and through the halls, trying to throw herself THROUGH doors and windows. In a panic, the school staff corralled her into the assistant principal’s office and called the police.  The deputy who responded called the Psychiatric Emergency Team who came and evaluated Jani and took her to UCLA.

 


Jani spent the better part of six months at UCLA. They have said that she is the most “complex” case they have ever seen. Unlike Jani’s other hospitalizations, UCLA didn’t just prescribe medications and send her home. They actually tried to figure out what was going on. They performed every test at their disposal, or at least the ones Jani would cooperate with.  They ruled out autism. They ruled out Asperger’s. They even ruled out bipolar as their tests, just like the school tests, had shown that Jani had no consistent external “triggers.” They suspected schizophrenia, which does exist in our family history, on both sides, but were reluctant to make the diagnosis.

Months passed. I spent every day fighting with the insurance company (they denied care for Jani three times, forcing me to appeal to the state-UCLA ate thousands of dollars in charges rather than discharge Jani when she wasn’t stable). Jani qualified AB 3632, which meant that the school district would pay for residential care. Yet the only two residential facilities in the entire state of California that would accept a child her age (both in the LA area) rejected her as being “too staff-intensive.” The only residential placement offered to us was in Texas, which we refused, unwilling to let our daughter go out of state where we could not daily make sure she was okay. We drove to visit her in UCLA every day, which was an hour there and an hour back.

January SchofieldAfter three months with little improvement, UCLA diagnosed Jani with child onset schizophrenia. When in a psychotic state, no one could reach Jani. She would bite the furniture until her mouth bled because she said it made her teeth feel better. She hit her head against the wall. She tried to jump out the window at UCLA.

300 mg of Thorazine stopped all this. It did not drug Jani into a stupor. Rather, it made her social. On Thorazine, she would play with the other kids. On Thorazine, she stopped talking and playing with people and animals that weren’t there. On Thorazine she stopped kicking the hospital dog and staff who she loved (and us).

But that dose of Thorazine came at a terrible cost. It put her into Dystonia, and because she freed from the psychosis, she was terrified. We held her as she screamed in terror that she couldn’t swallow.

So the doctors had to come down on the Thorazine. And every day we would watch, heartbroken, as she slipped away from us again into the world of her delusions and violence, which isolated her from everybody but us. And eventually, even we couldn’t reach her anymore.

Unable to get Jani placed in a safe environment where we could still be a part of her life, I began to consider my original idea of sending Susan and Bodhi away so Bodhi would be safe. This came back to me the day that we visited Jani and had not brought her favorite foods. She starting trying to bite Bodhias if to eat him. She was trying to bite him but crying at the same time, saying “bye, bye, Bodhi. I love you.”

UCLA had no answers. The head psychiatrist there had never seen a case like this in his thirty years of work.


Susan came up with the idea of two apartments. We traded in our two-bedroom apartment for two one-bedroom apartments across the parking lot from each other. Susan and I were separating, but it would not be my apartment and her apartment. It would be Bodhi’s apartment and Jani’s apartment, which Susan and I alternating nights so that neither child ever spent more than one night away from either parent.

We divided the family in half so that our son would not grow up afraid of his sister, so that he would enjoy a safe environment. Jani can be very sweet to him. It is our favorite thing to watch them rolling around on the floor together, laughing. Jani truly loves her baby brother. But sometimes, without warning, she will still try to hurt him because the voices in her head will attack her until she does.

Our princess.There are no more rages. Today, the thought disorder and irrational thinking are very clear. Jani only needs to hit once, only once, so that the voices in her head will stop screaming at her and 400 will stop scratching her and Wednesday will stop biting her. She experiences hallucinations in four of her five senses.

When we are out of the hospital, Jani will rip off her clothes in public if she spills even just a drop of liquid on herself. She will laugh and suddenly bolt into traffic because she sees “80” or another hallucination in the street waving for her to come. She will tell people to be careful of Wednesday because she bites. When I tell her Wednesday can’t hurt other people, she tells me “yes, she can. She can hurt them in their head.”

Today, Jani is on Clozaril, the most powerful anti-psychotic yet invented, which is reserved for only the most serious cases of schizophrenia that have not responded to other medications. It is illegal to give Clozaril unless there are weekly blood tests to check for the destruction of white blood cells. So far, Jani is not having any side effects. So far, the psychosis seems to be abating. Jani still sees the hallucinations, but they do not dominate her life so much. Yet, Clozaril has no sedative effect on her. Still, she is happy again. She is more herself. She is playing and interacting with other kids. She has friends, and she has found friends amongst the kids in the psych unit, because they don’t judge her. She is not weird to them.

 


January Future

When Jani was born, we were worried about her having ten fingers and ten toes. We banked her cord blood because we were afraid of childhood cancers. It never occurred to us that there would be anything wrong with her mind. You don’t think about that.

Jani’s future is the great unknown. It is for everybody’s child, but none of us like to think like that. We like to plan. We like to envision. We like to dream for our children.

We don’t do that anymore.

One dream...We only have one dream, and it is that Jani is still around for us to hold in twenty years.

We want two things; to keep Jani alive and to allow her enough happiness that she wants to stay alive.

Everything else is a bonus.

I don’t care if Jani finishes school. I don’t care if Jani never goes to college. I don’t care if Jani never works a day in her life. I don’t care if she lives with us forever.

All I care about, all Susan cares about is that Jani is alive and is as happy as her illness will allow.

The prognosis for child onset schizophrenia is worse than that of adolescent or adult onset schizophrenia. This is because the adolescent or adult has had more time to develop cognitively and emotionally before the psychosis started to eat away at them.

For that is what it does.

 


Jani has a 50/50 chance of living to adulthood. Her intelligence makes her risk of suicide higher. However, having a loving and supportive family makes her risk lower.

And Jani has that. And that may be all she has. The social services that Jani has qualified for are not equipped or trained to deal with a psychotic child. They modify behaviors, which is pointless when the child is not in control of their own mind. Jani can learn all the right behaviors in the world, but that doesn’t mean she can always fight the voices in her head. She tries. She is the strongest and most courageous person I have ever known.

Susan and I go forward into the future, feeling very much alone. After so many disappointments with social services, we no longer believe there is any one to help Jani. Or us.

Daddy and daughterAt least not yet. We are working to change that. This is why this website exists. So that you know that children like Jani exist. And they need your help and understanding. So do their families.

Our family is not alone. Child onset schizophrenia is extremely rare, appearing in only .01% of the population. But it does exist. There are others, screaming in the darkness for somebody to help them.

Originally, we wanted to tell Jani’s story because we hoped that someone somewhere out there could help us. Now I am pretty sure that there isn’t.

I think there have always been children like Jani. I just think most of them didn’t live to adulthood.

Now I want to tell Jani’s story to let other families know that they are not alone, that their children are not just brats, that they aren’t bad parents, and that maybe even if there isn’t a cure, there is each other.

I live to keep Jani alive, and all like her.

For all the hell and all the struggles, it has been a privilege to be her father. It is the greatest thing I will ever do with my life.

If Jani can tell her own story one day, then I did my job.

329 comments on “A Father's Journey

  1. The whole time I was reading I kept thinking maybe Jani’s the one who cures cancers or something else just as wonderful. I have faith she has a future as bright, rare and beautiful as she is. I will do whatever I can to help over the years. I’ll never forget your family. May God give you the strength, courage and knowledge you need and may he open the hearts of others with the means to help.


  2. I agree with samantha. The entire time i was reading, i was like, this girl’s going to save the world. Your story has touched me, I just hope that there is a cure, or at least something to help jani control her hallucinations so that she does not fear them. From now on, every night, i will pray for her, and her family, and everyone who has tried to help her. Good luck and God bless you!

  3. I read your story and I truly think you and your wife are the angels. I believe God only gives these special children to special parents. I have a “special” daughter also. She has been diagnosed with agenesis of the corpus collusem,(which means a part of her brain did not develop properly), epilepsy, cerebral palsy and severe rheumatoid arthritis. She was extremly colicy for the first 18 months of her life. And we also would do shifts sitting up with her. They told me she would never walk or talk. She is 12 now and walks, but very slowly and her gait is unsteady and she also has a vocabulary of approx. 20 words. I used to be discouraged and think why, why us? But now I say why not us? She has taught us so much about strength, courage, and love. She is mentally like a 2 year old right now.

    My only goal for her in life is to be happy and for her to be pain free. I know she will be with us till the day we pass. But my fear is what will happen to her when we do?

    I just wanted to tell you I think you and your wife are amazing people and you should be so proud of yourselves. Take care and God bless your family.

    Angie Leroux

  4. Thank you for sharing your story. I have my masters in Marriage and Family therapy and know that child onset schizophrenia is extremely rare and so I really appreciate reading your blog. I can only imagine the tough road you have been on and the tough road ahead please know I will keep you all in my prayers.

  5. have you looked into this..
    There is a such thing as a sensory dysfunction disorder/sensory integration disorder. I am not saying this is what she has however: check out this website: http://www.physorg.com/news175504269.html There is a such things as hallucinations and paranoia brought on by sensory deprivation. THere have been many studies done on this. A sensory disorder is very complicated to explain, do research into this area once you understand it you can see how in an extreme instance it can cause paranoia and hallucinations.

    Note from Michael: Thanks but we are pretty sure it is schizophrenia.

  6. I saw your story on 20/20 last night and googled you first thing this morning. Jani’s world is just beyond words for me but I will think of her often. You are amazing parents and I hope that whatever drug regimen you have her on works. I wish the best for Jani, she has a great chance to achieve anything with you as her parents.

  7. I was touched by your familiy’s story and moved by your love of your daughter. Thank you for sharing it with us. May God’s strength continue to hold you up and He will walk with you and your daughter.

  8. Saw the 20/20 episode
    My heart broke in half and I am beyond words. What is the purpose here? Why is there so much suffering in the world? Keep your faith and pray hard for her. Many new developments happen everyday and though her outcome is currently judged as dismal I don’t buy that for a moment. A drug, and miracle will come along that mwill make this little angels mind right, and allow her to further develop beyond her ilness. SHe may not get there tommorrow but she WILL GET THERE.

  9. My heart breaks for you and your wife, Jani is a beautiful girl one you clearly love dearly!! The mind is one of least understood organs and mental illness is the toughest road out there. As you said it’s for life never to be cured only to be managed. My hope is that the work you are doing to bring light to this illness will help not only Jani but others as well. You have my support 100%.

  10. From 20/20
    From this program, your family has taught me so much. I think my grandson has this disorder. He also has imaginary friends and spits and bites and screams. No one can understand him. He is 7 years old and has been through so much. I know my daughter will now be able to tell his physician what she thinks he may have. God Bless you and your family. And especially, God Bless Jani.

    Not from Michael: Karen, feel free to direct your daughter to my online support group for parents of mentally ill children. With or without a diagnosis, it might be nice for her to hear from other parents who are going through the same thing. Here is the link:

    http://health.groups.yahoo.com/group/parental-support/

  11. If there was ever an example of the power and unfailing love of a parents love, it would be you both.
    I pray to god to grant all your prayers for Jani.

  12. mental illness
    My heart goes out to you.All the wrong doctors,hospitals,and drugs that can really harm a person.We have been going through something like yours,no doctor wants to listen to us on how a drug is working on my son.I hope things are going better for you and your family.Mental illness is a self educated thing,if you don’t know they won’t tell you or they don’t know.Keep family together.I’ll be thinking about your family.

    Note from Michael: Sharry, consider joining our online support group (which you can find at the “Resources” page of my website. There is no bullshit there. Just families like you trying to figure it out.

  13. I admire you
    I really admire what you are doing. When I was in school I had severe OCD, but was always too ashamed to tell my parents and hid everything that was happening to me. My dad’s mother had schizophrenia and it affected him when he was young so he denies all mental illness for some reason. When I was 24 I finally had my own medical aid, and after an incident with tranquilizers and red wine decided to see a doctor. After a long journey I’ve found out I have Temporal Lobe Epilepsy, Bipolar II, Generalized Anxiety Disorder and my OCD is currently in remission. I only discussed my epilepsy with my father and he got angry with me because I was embarking on “legalized drug pushing.” I feel completely alone in my anxiety, depression, sometimes psychosis and battle extremely hard every day to stay sane. I wish I had parents like you. I send my heartfelt sympatthy and admiration to you for what you are doing.

    Note from Michael: Dear Day-By-Day, please know you always got us here. You can also go to “the Village project” which you can find on my “Resources” page and find others will similar stories. I think in my case having a mentally ill mother, even if I didn’t know it at the time, helped me be more sympathetic to Jani. As for your father, I know from my experience that I carried a lot of anger for years thinking that my mother didn’t love me. Knowing that she had schizophrenia allowed me to let go of that anger and to understand that she did the best she could. I hope your father can let go of his anger as well.

  14. I read that autism/asperger’s were noted by a few doctors. I wonder if anyone mentioned Multiplex Developmental Disoder? This is a research category but it combines autism and schizophrenic-like symptoms. Jani’s mannerisms do present like a child with autism–stimming, fixation on rituals and fantasy, social disconnect. Just a thought.
    http://childstudycenter.yale.edu/autism/mdd.html

    Note from Michael: Not fantasy: hallucinations. Big difference. And Jani doesn’t really fixate on rituals. At any length, I appreciate the suggestion but believe me all aspects of Autism have been rules out. I wish she did indeed have autism because then Jani could qualify for services through the Regional Center.

  15. Thank you, from the bottom of my heart, for having the courage to tell your story to the world. I do not have any children, nor do I have any experience with mental illness; this was very eye-opening. I am writing a paper that deals with childhood psychological disorders and the low quality and/or lack of proper psychiatric care available and the effect on the family as a whole. I would like to ask your permission to include quotes from your blog in my paper. I would like to see this story touch as many people as possible. Thank you, again.

    Note from Michael: Of course. If you would like to email me directly to ask any questions, feel free. My email is michael.schofield@csun.edu.

  16. I will be keeping all of you in prayer. There is no humanly known cure for Schizophrenia but there is a loving God who can do the impossible!

  17. The first time i saw Jani’s story was on oprah…and i have not been able to get her out of my mind since then. she has truly captivated my heart. I find myself at times randomly thinking of Jani. There is just something about her spirit that I can not get out of my head. I really hope that she can “fight” off the psychosis as long as possible. I do not know too much about schizophrenia, but I do know what i scary place it can be…especially for a child. Please give Jani a special hug from me. I really have love for her, even tho I do not know her. I was very excited to see that her story is coming on another show tonight on Discovery Health channel. I will for sure be watching. Much love to all of your family.

    maryanne – Texas

  18. teacher
    Your daughter was the most fascinating and endearing of all the children featured on 20/20 and I was so pleased to see more of her story on the Health channel tonight. I work with children with autism, many of who have symptoms of OCD, paranoia, tantrums, etc. and are still such a joy to work with. I am so proud of you that you are such a dedicated father and that you and your wife have had the strength to raise her together. I too wish she DID have an autism diagnosis so then maybe I would get a chance to work with her. I wish you the best and will never forget her story.

    Note from Michael: Jennifer, send me an email with your location. I ask because my online support group also accepts parents with children on the autistic spectrum so if you are offering to help, I can certainly put you in touch with children who need you!

  19. I have spent about two hours reading about Jani and my heart goes out to your family. I am so sorry all of you – Jani especially – are going through this.
    Is there any link between Jani’s symptoms and the timing of when she received her vaccines?

    Note from Michael: I have answered all your questions numerous times, but here we go again…

    No.

    Did she seem to get worse or did new symptoms emerge after she was vaccinated, at any point?

    Note from Michael: No, and there is no scientific link between vaccines and either schizophrenia or autism. Such beliefs are leading parents to avoid vaccinating their children and we are seeing an increase in childhood illnesses that were all but wiped out forty years ago. Does anybody remember polio?

    I understand what you’ve done with allopathic treatment. Have you tried alternative treatments? Chelation, sauna therapy, gluten-free/casein-free diet, nutritional supplements, acupuncture, herbal detox, Reiki, etc.?

    Note from Michael: No. I do not believe in alternative therapies. If someone else wants to pursue them for their own child, that is there choice, but I don’t support those kinds of therapies as replacements for medications. Personally, I am not going to torture my daughter by putting her through anything that isn’t scientifically based. However, I believe in supportive therapies to medication like animal therapies, art therapy, recreational therapy, etc.

    I have a three-year-old son who has sensory integration problems and has some of the same issues as Jani (excessive need for stimulation, disordered sleep, tantrums, aggression, etc. – although obviously not nearly as severe) and the best thing we ever did was take him to a Doctor of Oriental Medicine who was also a nutritionist. We radically altered his diet and started him on supplementation – DHA, Vitamin B complex, Vitamin D, and a high-dose comprehensive multivitamin – and it really helped. I am not saying Jani could be cured by taking some vitamins, but I think you have to admit by now that the allopathic treatment is not working and it may be time to think about other things.

    Note from Michael: I am happy that these things have worked for your son but no, I do not admit that allopathic treatment “is not working.” It is not curing her, no, but it is working. She is alive and reasonably functional and able to get enjoyment out of life.

    There are some incredibly knowledgeable and empathetic alternative practitioners out there who would be very willing to help you. The Western medical system is not designed to help people be well in body and mind, just to treat sick people’s symptoms. I know with my son, he seemed to be constantly uncomfortable in his own skin – restless, agitated, hyperactive – and then he would melt down (for hours on end, usually) and become stuporous. He is like a different child now with the changes we’ve made. At the very least, I think you have little to lose by trying some alternative treatments.

    Note from Michael: That is a huge assumption on your part. You have no idea what we have to lose. My focus is on keeping my daughter alive and happy, not dragging her from crackpot to crackpot who swears they can “cure” schizophrenia. We did not do the show to find a “cure.” We did the show to raise awareness that this issue exists that as as a society we need to work together to provide kids like Jani, Mari, and Logan a better, more fulfilling life.

    I can tell you right now that no matter how much she likes them, feeding her french fries is not helping her. A whole-food – highly nutritive – GFCF – organic diet, supplementation, and some detoxification therapy might not cure her but it might help her get to a point where the medication would be more effective, and she would feel better on less of it.

    Note from Michael: You obviously haven’t read my blogs or much of our story. If she doesn’t get the foods she wants, she simply won’t eat. At all. End of story. It is difficult to rationalize with someone who is psychotic. That is what you don’t seem to understand. You can’t “alter” their diet. You live with what the illness gives you.

    I am not trying to judge you – I have nothing but sympathy for your situation.

    Note from Michael: I didn’t take it as judgment. I take it as pushing ideas that worked for your son onto my daughter.

    But please, please do not think answers begin and end at the hospital door.

    Note from Michael: I don’t. Again, have you read anything about our cause, about our planned non-profit, about the support system we are creating to help mentally ill children?

    Treatment of illness has been around for thousands of years, Western medicine for a couple of hundred. There are so many therapies out there that could help Jani that have nothing to do with psychoactive drugs.

    Note from Michael: And none of them are supported by scientific research. What you are doing is the equivalent of telling someone with diabetes to stop shooting insulin or a cancer patient to stop chemotherapy.

    I will pray your family finds some help and some relief. God bless all of you.

    Note from Michael: Thank you. You as well.

  20. Fortunate
    I just saw your documentary this evening. I work for LA County DCFS. DCFS often becomes the last resource for families who have nowhere else to turn. Over the years, I have worked with many families who did not have the resources available to adequately meet their children’s significant needs. Hearing about facilities refusing to admit Jani or refusing to take your insurance is all too familiar to me. I know BHC Alhambra well….AB3632 too…. One family in particular stands out. In this situation, we had to detain the child just so that she would be eligible for full scope Medi-Cal and receive modestly better services. This was an agonizing decision for the family to make. Jani is truly fortunate to have such loving and quite honestly, high functioning parents. Many children do not.

    Note from Michael: Thank you for sharing. I am well acquainted with LA County DCFS,having had two reports filed on me over the past two years. It seems to come with the territory when one has a mentally ill child. Almost every parent of a mentally ill child I know has been investigated by DCFS (or equivalents in other states) at one time or another. Both times, of course, we did ask if there was anyway DCFS could help us but, as you implied, they could not because we were “functional.” What I wonder though is if parents become “dysfunctional” because there is no help. We got the two apartments because the only two in state placements available to us, Maryvale and Five Acres, would not accept her because she was too “staff-intensive.” Both facilities are, of course, packed with DCFS kids, as were most of the kids at BHC Alhambra. I am criticizing DCFS in any way. Despite being investigated twice, both DCFS workers were very sympathetic and understanding. I just find it sad that DCFS ends up caring for children whose needs should be met by the Department of Mental Health and its affiliate non-profit agencies. DCFS cleans up the mess left behind by the failures of DMH.

  21. I had to say something
    I saw your story on TV tonight and went straight to you website. I had no idea that our doctors and hospitals could be so impotent in such a dire situation. You and your wife’s strength is insperational for lack of a more powerful word. I know your daughter will grow up through this struggle and whether or not she cures cancer, if she can tell her story in her own words she will be directly responsable for raising awareness about the fact that children CAN be born with such mental disorders. Just as you are now. Thank you so much for sharing your story so far and I hope you continue to maintain your websites. I’m humbled.

  22. Wonderful Parents
    I watched the story last night, and I think you guys are wonderful parents…I found myself asking if I could do what you are doing, and the answer was yes! You love your children, and if Jani had cancer or was missing a limb or had down syndrome, nobody would question how you are handling your situation.

    Keep up the good work, and may God bless your beautiful little girl.

  23. I just watched and read your story and find it to be extremely interesting. January is a beautiful little girl. I am terribly sorry for all that you’ve gone through and am proud of you for keeping up with the constant struggle and hope for only the best for all of you guys.

  24. I just watched your story on Discovery Health (doubtedly, I missed a few minutes because of DVR issues 🙁 ) But I was extremely interested by your story. I have read the whole site and most of the comments as well to satisfy my need to know more. I am a first year Pre Med student, not planning on going into psychiatry, but truly interested in this subject because one of my favorite movies is “A Beautiful Mind.” I am also very interested in Autism. There is a girl who suffers from severe autism who can type(Her name is Carly Fleischmann)and she describes her autism as her body overstimulating itself, and that what she does is because of the overstimulation. Such as Screaming and banging her head to try and cancel out the overstimulation. After reading your story and how Jani loves, and needs, to be stimulated I find it interesting how these disorders are so opposite yet are both apart of your organization. I recently just watched a movie called “Autism: The Musical” that I would like to recommend for those in your organization who deal with Autism, and just anyone in general because it is a FANTASTIC documentary!

    Also, I also would like to say to not completely throw out the idea of alternative medicine. I am not saying replacing the medications with this, which would be wrong like a cancer patient refusing Chemo for an all alternative course of treatment (which is just stupid because thats pretty much suicide in my opinion) , but as an accompanying treatment, because it may help. But of course, this is completely your and your wife’s decision.

    Lastly, I am completely sympathetic to your cause because I suffer from ADD (specifically NOT ADHD, and am confused as to why your daughter was even diagnosed with it because, as someone living with the disorder, she is obviously NOT) and after watching “Autism: The Musical” twice this week, and seeing your story tonight, I would like to help in some way. I live in Florida and go to school in Ohio, but I would like to help in research in some form even though I do not plan on going into psychiatry (endocrinology, actually), because I think your daughter’s case can provide important information on solving this disease.

    God Bless,
    Anais

    PS: I think Jani would LOVE NYC because of its nonstop style, that is why I love it. And pardon the slight incoherency, I am suffering from a cold and my mind kind of does not work when I have one, but I felt the need to write something. 😀

  25. Saw your documentary and found your site. My heart goes out to your family. I worked as an RN for 30 years in an acute and long-term psychiatric facility. Very few persons understand this dreaded disease, which so adversely affects every aspect of a person’s life, including the family. More research MUST be done! We were always understaffed, underfunded, and under-everything, but the FIRST area to be cut from the budget. Thank you for your insightful site/blog and all you are doing to bring attention to this misunderstood disease. I dealt mainly with adults with schizophrenia and psychotic episodes, so I can only imagine a child dealing with that. YOu are doing everything you can do, more than everything. Thank heavens she has you, your wife and family to help her in this uncharted struggle.
    All the best for you, Jani, and your family. I want to check back frequently to see how you all are managing.
    Olivia
    On another subject, I never saw alternative medicine work and believe me, many families tried. This is one tough disease and increased research is one of the only ways we can get help.

  26. Thank you for sharing Jani with the world!!! You and Susan are amazing parents! I sent you an email telling you about my daughter who is 10 years old and has early onset childhood Bipolar,OCD,and ADHD. Her and Jani are so mch alike! My daughter also suffers from hallucinations. Fortunatly for her she can be stabilzed with meds and had been stable for over a year. But reading your story and watching your show was like looking at our lives from the outside looking in. Thank you for bringing awarness to children with mentall illness so that kids like Jani and my little girl can live in a understanding world! That is my dream that one day people wont stare anymore and they will just accept my daughtr for who and what she is! Jani is an adorable little girl and thank God she has wonderful parents!

    Note from Michael: I have a huge pile of emails to get through but thank you in the meantime and what you said is exactly what we want for mentally ill kids: For them to be accepted and loved for who they are!

    Please consider joining our private online support group for parents of mentally ill children. The link can be found on the “resources” page of this website.

  27. Jani is a beautiful child.
    I’m sorry that I really do not have anything to add. I just wanted to comment on what beautiful children you have. Jani and Bodhi are adorable. I feel for your situation and I pray you get whatever assistance you need.

  28. A friend sent me the link to this page. I sat reading it, in shock, praying that God would send someone your way to help Jani. I don’t understand from a personal view, but God place her in your lives for a reason, and it seems like you guys are so happy, despite the hard times! God Bless.

  29. In Defense of the French Fries…
    Hi,
    I just wanted to confirm to the skeptics that [u]you cannot make a psychotic person eat something they don’t want to eat![/u]

    My Aunt died after a 10 year battle with Huntington’s Chorea. Psychosis is one of the symptoms that emerges in later stages. She would not eat anything but snickers bars, chocolate ice cream, enchiladas from Pancho’s, and Dr. Pepper. Trust me and Michael, you have no idea the strength that human being has until you try to make a psychotic person eat something they don’t want to eat.

    My aunt would spit, scream, writhe, bang her head against the wall, burn herself…she was in constant mental agony… so you know what? Hell yes, I gave her a scoop of chocolate ice cream, a frosty mug of Dr. Pepper, some Pancho’s Enchiladas, and a f*cking snicker’s bar. And you would’ve too if you’d been in my shoes. So let Jani eat her french fries and enjoy her life. She’s a beautiful girl, has amazing parents, and a cute little bro to boot.

    Michael, you and your family have my support 100%. Give Jani a hug for me. Also, I think she’d have a blast if you let her loose with paints in a room lined with butcher paper 🙂 I bet she’d love it and make some pretty cool pictures too.

    Peace,
    Delaney

    Note from Michael: I agree, Delaney. When someone is suffering, you give them what they want, even if it isn’t the best thing health wise. Those who suffer from mental illness are suffering enough already.

  30. I’ve been following your blog for several months now, and made sure to record the Discovery Health program. Like many other people, I have been profoundly affected by your story. I think of Jani often, and I just wanted to say how wonderful it is to see two people love their child as deeply as you and Susan love yours. (Both of them.) Jani is so remarkable. I am amazed at her imagination and her strength. For what it’s worth, if I ever come into a large amount of money, I’ll start a commune somewhere for kids like her and their families, so they can have the environment they deserve. If anyone deserves a world built around them, it’s Jani.

    Note from Michael: We are already working on it, Jody. It is called the Jani Foundation. We are in the process of setting it up right now. It is not a commune per se but a organization that will provide therapies and support with the goal of helping mentally ill children stay a part of their families and their communities.

  31. Guest
    Michael, I was profoundly moved to read the story of your daughter. My sister’s daughter has autism and I recall with great clarity the struggles we had with her from about 6 months on. At 5 months, she just began screaming constantly. Quite by accident, we discovered that watching Barney on a silent tv was the ONLY thing that would quiet her. She watched Barney 24/7. No one could walk between her and the television set or she would howl. Then she couldn’t be touched. Then later, movement or change would set her off. If she was moved from one room to the next, she’d scream. If she was in a moving car she was alright until the car would stop at a red light. She’d start screaming. Then when the car left the red light, she’d begin screaming anew.

    There were the head-banging episodes, the scratching her face and our face episodes. Many times I thought my sister would lose her mind.

    And still, as I read your blog, all of this paled in comparison to what you and your precious family have been facing. My heart and my prayers go out to your family for strength, perseverance, and healing of mind and body. God bless you all.

    Note from Michael: Thank you but pain is pain. Many members of our support group have children on the autistic spectrum so you are welcome to join. The link can be found on the “resources” page of my website as “Online Parent Support Group.”

  32. The system fails us most time
    Hi I watched your show tonight and my heart broke. I know what its like to have a child who is mentally ill. My daughter was the prefect amazing 8 year old and a champion gymnist. That was 8 years ago. The last 8 years have been hell. The little girl I loved dissappreaded and a frightened violent little one came out . Months and months of screaming and crying and withdrawing. Hurting herself and zoning out finally during one episode I was told by my baby that someone at her gym was touching and hurting her. Till this day I blame myself. How could I not see she was hurting how did I not know. I was to worried about my champion. We hide in disgrace and left the gym. Till this day she blames me for not making them pay for what was done to her. I took her back and forth to her pediatrians countless times. All they did was drug her up and send her for counseling. What a joke the mental health for kids in pa is horrible. They dont listen they just dont give a dam. My daughter after 8 years has been diagonosed with ocd, panic disorder. post tramatic stress syndrome. bio polar. Worst of all she got a streph infection 4 years ago and it went to her brain. It is call PANADS. She has never been the same. They dont know how to treat it how to fix it. K is now 16 years old. She is a beautiful girl but is plagued by the demons of her past. Not one week goes by that her ocd or panic kicks in. She is afraid to love a boy because of what happened to her. She cant go to school out of fear she ocds about death all of the time. She is always scared. I have done everything I can to give her a better life but they just dont care here. K watched your daughter and she said somthing very profound she asked mom Why cant they make the voices go away? I hear them too and they told me there not real? That terrifies me. She hears voices and no one will listen to her. I just wanted to finally tell my story. I am glad they listen to you. Here no one listens to me. Lock her up is all I am told. I hope Jani finds peace. I pray my k does also.

    Note from Michael: I am so sorry. You are right, the system does fail, which is why we have stopped waiting for them. We are doing it ourselves. We are creating the world as we want to be for Jani and for your daughter. We want to bring her peace and happiness, whatever peace and happiness her illness will allow. Please consider joining our private online parent support group. We have other members and other kids in PA and if nothing else it would let you and K know you are not alone.

    http://health.groups.yahoo.com/group/parental-support/

  33. In my prayers
    I saw your story on tv and googled you. I just want to extend my symphathy to your family and let you know your whole family is in my prayers, especially your marriage. I know from dealing with Bi-polar disorder that mental illness can tear a family apart and I really admire what lengths you are willing to go through to keep your family together. I hope through the chaos there is time for you to connect as a couple and you continue to grow and love each other. You are a role model for everyone out there dealing with mental illness. Thank you for the inspiration to struggle through another day. I sincerly hope you find a balance of whatever medications or therapies to help Jani cope.

    By the way…
    I love the names you gave your children, beautiful just like them.

  34. I just saw your television special and I felt like you deserved to know something from me. I have a daughter myself who is healthy and doesn’t have any mental conditions that I know of. And I hope she stays healthy forever. But I think that most people, myself included, they just have no idea how difficult you must have it. I have no idea. I do hope the best for your wife and your son and your daughter, but I especially have high hopes for you as their father you’re someone I can relate to. There are many people who I can say that I aspire to emulate in my life. I’ve had quite a few good role models. I’d like you to know that you’re definitely one of them.

  35. I saw your story tonight on Discovery Health and I was fascinated and intrigued by Jani’s story. I immediately went to my computer and googled her which brought me to your website. As I was reading Jani’s story I was shocked to learn that you have a history of schizophrenia on both sides of the family. I then went on to read that you said you were worried that she would be born with all her fingers and toes but schizophrenia never entered your mind. If it is in your family history did it not occur to you at all that this was a possibility? There was no fear or concern in the back of your head? Please don’t misunderstand me, I am not judging you, it’s just that if the illness runs in your families you had to consider the possibility of it affecting your children.

    Note from Michael: Actually, no. As I have stated, it isn’t something that either of our families talked about so we really had no idea that there was a history of schizophrenia until after Jani was diagnosed and we went back and started asking questions of our families. You have to remember that there was a time when mentally ill family members were hidden away in institutions. Many families had the “uncle that nobody talked about.” Hope that clears it up for you.

    Having said that, would we had not had children had we known? Absolutely not. The mentally ill have as much right to exist as the rest of us. It is incumbent upon us as a society to make their lives easier, not the other way around.

  36. I have read your blog with great interest and emotion. My daughter told me about the television broadcast but I don’t have that channel, so I read about Jani instead.
    If you have time, you might find this link of interest to you: http://www.orthomed.org/index.html. This is a field of psychiatric treatment that is well-documented, and well-established, and might offer some additional help for your daughter. All the best to you and your family.

  37. I was moved beyond words watching your story unfold and seeing you and your wife struggle to make sense and come to terms with your daughter’s illness. As a mother of a child with autism I found myself nodding in silent acknowlegement and agreement as your story unfolded, as you saw this most beautiful baby girl start to change when nobody could tell you what or why. I understood your feelings of complete helplessness as you struggled for a diagnosis and when you said you were not devastated by her diagnosis but relieved to finally know the enemy you were facing, I can tell you that I said those exact words, when finally..FINALLY my beautiful boy was diagnosed as well. I, like you and your wife have had to modify everything in my life and everything I had thought my life would be in order to ensure the safety and happiness of my son. If I could thank you for just one thing it would be your declaration that you would do it all over again, that you have been honored and priviledged to parent this lovely child. I feel this so much and when I hear people tell me “Oh, I don’t know how you do it, I could never do it” or call me a “saint” for simply loving my child as he is, it only makes me wonder “what else would I do?” He’s my child. Thank you again for sharing your extraordinary family and for expressing so publicly what I have felt all these years.

  38. I’m not sure what to say…
    First off, I think you two deserve a medal for most supportive parents on this planet, and happy mother’s day! I can’t imagine the amount of strength and courage it takes to fight such a never-ending battle to save the person you love from themselves. I have to say, as a biochem premed student, I find this story fascinating and I was upset to hear you didn’t get into the NIH study. Jani is an incredible mind and more research needs to be done into this disease. I can only hope someday that she will be a part of that, and that I can somehow help. Thank you for taking the time to tell her, and your, story and keep it up!

  39. same situations…
    hi to you sir! were in manila, philippines right now… my friend told your story and gave us your website, a friend from california… and im really really surprise, because we have the same situation and i relate to your story with us with my wife, my eldest daughter also diagnos with kind of sickness schizophrenia… now wer searching a support group to help us with our problem to my daughter, and i know we can help each other for our problem… as i told to everybody, prayer is the answer for all the problem that we have right now and we just keep on hoping for the best for us… again thank you very much sir for sharing your story… god bless us!!!

    Note from Michael: Cesar, we have an online support group for parents of mentally ill children. Here is the address: http://health.groups.yahoo.com/group/parental-support/

  40. I am truly sorry for what your family is going through. I have a child with Aspberger’s and sensory integration also. We knew from birth that something was not right but it was not until he was 2 that things began to get really bad. After many, many dr’s and diagnosis we finally found a Dr. who has been able to help our child and with meds and therapy he is like a different child.
    I am so sorry that the resources are not there for your family but am aware of the broken process. Good luck with your journey and I wish your family much success. I have learned to take each day as it comes and when times were bad before each hour with no problems, meltdowns or disasters was a success.
    Keep up the good work on mental health awareness.

  41. As I sit here now (at almost midnight) I am wiping away tears not only from reading Jani’s story, but because I had to admit my son to a psychiatric hospital last night, once again, praying THIS time maybe, just maybe, someone will have the right answers for me. Medication names and dosages along with diagnosis’ have all begun to run together in my mind because there have been so many. Aggression and violence is a daily routine in my house with our 7 year old son. Getting told to use more punishment and behavior modifications that have no effect. If one more doctor tells me this is ADHD, I’m going to be the one that needs the psychiatric treatment.

    I came to read Jani’s story because a friend of mine told me about your daughter. Up until this point I thought I was alone. Who would believe me if I told my son’s story? If I can’t get therapists and psychologists to listen to me, how will anyone else?

    The parts of Jani’s story about her imagination ring true here too….”Your son just has an active imagination.” My son says he hits because “My hand is evil and I need a new one”. He’s is also highly intelligent (scored a 137), but can’t function in day to day life.

    Thank you for telling Jani’s story. You have given this Mom a new strength to keep fighting to get the right answers. I have also seen in your story that there is hope that one day my son will find some sort of relief and that his future will look bright. I will now wake up tomorrow with a new hope and a renewed strength to keep fighting!

    Thank you so much!

    Note from Michael: No, you are not alone, not by a long shot. In my online support group there are nearly a hundred families who either have been or still are exactly where you are. Here is the link: http://health.groups.yahoo.com/group/parental-support/

  42. Hi Michael, I just wanted to show my support to you and your family. I saw Jani’s story on Oprah a while ago. I’m a college student taking a course and psychology and when my professor mentioned schizophrenia my mind went straight to Jani. I can only imagine what it is like for you guys and my heart breaks for Jani, she’s such a brilliant girl but yet she has to deal with this illness. I pray that one day someone will be able to help her. I admire you and your wife so much, you guys show people the true definition of love. I would tell you not to give up hope but I know that with the passion you have shown for your daughter you will never give up.

    P.S. if you and your wife still take her on trips to help stimulate her you should try NYC, I’m from NY so I know what the city is like. I’m not familiar with California, but if there are trains there or buses they would also be stimulating. May Allah bless you and your family. I will keep your family in my prayers.

    Note from Michael: Thank you but we cannot travel long distances with Jani so for the time being NYC is out of the question. We don’t do any travel anymore.

  43. My heart goes out to your family and Jani. I too have a daughter who is mentally ill.
    I knew when Addie was two, something wasn’t right. She is very violent at times and mean to animals. She has a younger brother Garon is six. They cannot be left alone due to her violent behavior. She has been diagnosed as being severely ADHD and OTHER. Whatever the hell that is. I have been trying to get her help for years. The pain of not being able to help your child and seeing your family crumble. My son has no problems mentally. He was a dream until this year. When he gets upset now he hurts me and our sick dog. I had to stop 4 times while trying to send you this to break up fights. Addie went on meds in kindergarden which helped some. At school able to focus now. She is on concerta and risperdal. I feel like I am in hell sometimes. My husband blames me for everything….and now both kids beat on me. They can be very sweet at times. I understand having moments…as I have fewer and fewer every day. She hallucinates and has her own reality. She is extremely intelligent like Jani. She talked at 5 mos old, didn’t walk til 22 mos. I have to go…I can only do things at night. One therapist thought maybe she is schizo-affective. My heart truly goes out to you! God bless you and your family. I hope to be able to talk sometime.

    Note from Michael: Hi Tiffany. I understand about only being able to do things at night. Everything revolves around Jani. Please consider joining our private online support group. There you will find many who can understand and also have spouses in denial: http://health.groups.yahoo.com/group/parental-support/

  44. My prayers are always with your family. I couldn’t help tears in my eyes.. She is a brilliant girl, hope she can overcome the hallucinations as she grows.

    Do you want to try Yoga? Maybe she will be interested? Just a thought, I just feel Yoga may help her relax, focus. The brilliant girl, the number-lover she is – she sure has a bright future…

    Note from Michael: We have tried things like that but Jani cannot even focus or quiet herself enough to really get into a pose.

  45. How is Bhodi???

    Note from Michael: He is doing well. The speech therapy has been very beneficial for him, along with the occupational therapy and child development therapy. The sad thing is Jani would benefit from all of these but doesn’t qualify because of her age and the fact that she is not autistic.

  46. Hello Michael. I read in your blog that you feel that there is “no help” nor will there ever be for Jani’s illness. However, we live in an incredible world where anything is possible. I believe there will come a day that a “magic pill” will cease all of her hallucinations and she can live a fullfilling life that you so wish for her to have. I will follow Jani’s story and it will travel. God Bless.

  47. Gifted child!
    The only thing she reminds me of, are the gifted children I’ve worked with whose IQ’s were so high that they were not testable. I cannot imagine how difficult it is to keep her engaged for such prolonged periods of time. It really burns me how the system refuses to work with her. You are remarkable parents to do what you do- you should both have gone to medical school, you would have breezed through with your patience, insight and emotional endurance. I’m impressed on every level.

  48. Thank you for sharing Jani’s story with the world. More people need to acknowledge and talk about mental illness in children. Those who insist that it doesn’t exist, that you are bad parents, that your children just need more discipline or new age ‘treatments,’ are obviously extremely ignorant of the very real suffering that these illnesses can cause. My heart goes out to your entire family; you are doing everything you can and more, in this incredibly challenging situation, and I have great respect and admiration for you for that. You are obviously wonderful parents and your children and lucky to have you.

    I know firsthand what being a mentally ill child is like, and how important it is to have a supportive family. I had severe OCD (brought on by strep – PANDAS) and major depression as a child and teenager. On many occasions, my parents felt that the system was failing us, but they relentlessly kept trying. I experienced constant crises, often involving panic attacks or self-mutilation, was in and out of emergency rooms and psychiatrists’ offices, survived 3 suicide attempts and 4 hospitalizations over many years, tried countless medications, received endless psychotherapy, and was finally given 14 sessions of electro-convulsive therapy (ECT) while hospitalized for the last time. It was what my brain needed to release me from the life-threatening dread and despair that had been my childhood and adolescence. I’m 24 today and still take medication and receive therapy; things are not perfect, but with support from family and close friends I am doing well.

    I know my situation is different from yours, but I agree wholeheartedly with you that we need to share these stories, that mental illness is very real, and that there is a desperate need to have more mental health services and supports available for children, youth, and families who are dealing with these special challenges. I admire you so much for taking steps to make it easier for other families in similar situations. In the future I also hope to do all I can to help young people with mental illness and the people who care for them. I am also writing a book about my experiences to share my story with world. These stories need to be told for change to happen!

  49. I was really moved by your story and admire tremendously your love and dedication, and that you are also helping others whose children have a mental illness as well. It is hard enough being a parent, let alone coping, and keeping going, caring for a child with an illness. You are doing a great job.

    I have personal experience with depression and a family member who has just been diagnosed with a mental illness. Although I live in a different country, attitudes to mental illness sound similar and access to appropriate treatment can be a challenge, especially for children.

    Thinking of you all,

    Sue

    Note from Michael: Sue, I don’t know what country you are in but please let me know if there is anything I can do to help. I have an online support group, which can be found on my “Resources” page, for caretakers of mentally ill children. I don’t know if this applies in your case.

  50. I’m not sure what to title this comment…..
    I am not a parent of a mentaly ill child. I am a sibling and daughter of the mentally ill. My mother who passed at the age of 34 of a brain aneurysm was diagnosed as schizophrenic. She passed when I was 12. I am now 35. I don’t remember much of her illness but I do remember going to the pschychiatrist with her and her being on the medication stellazine. My brother who passed away when he was 24 from a methadone overdose was diagnosed as bipolar. I remember my brother being in and out of residential placement,pschyiatric hospitals throughout most of his childhood and as an adult jail and the state psychiatric hospital. He always showed signs of being different but it was when my mother passed at the age of 7 things really began to go south. My younger cousin was diagnosed as bipolar about 3 years ago after a psychotic episode where she was found wondering about 20 miles from home covered in blood. She has been in the psychiatric hospital at least 2 times since then. Most times after she decides shes well enough to go off her meds and try things on her own without the meds. I suffer from depression and am lucky enough to be able to control it with medication. I recently went off with the help of my doctor and found that after 6 months I really need to be on the meds to be able to keep myself balanced and focused. I am a mother of a 16 year old physically handicapped boy. He is the love of my life and if not for him I don’t know where I would be today. So as a parent of special needs I am able to understand somewhat where you are coming from. I am so glad and thankful you are such advocates for Jani and other children with the same similiar or like illness. It’s nice to know you are not alone. I am also a multihandcap student support aide in our local elementary school. I work with a non verbal severely autistic 11 year old girl. There are days when I could just bang my head off the wall and other days she’ll do something so remarkable that that one day takes all the bad days away. I am very intrigued by Janis story and will definately continue to follow it. They say god gives the special ones special children and will not give us more than we can take on. Best of luck to you and your family. May god bless you and your family. No one understands until they walk a mile in our shoes whether it be a mental or physical disability.

    Note from Michael: Thank you, Kelly, and thank you for doing the work you do. We are trying to set up The Jani Foundation so people like your brother don’t die in vain. We can prevent these tragedies from happening by providing real services to mentally ill kids and their families, like in-home support.

  51. Admirable Family- father
    Dear Michael,

    I just wanted to say how much this story made me want to continue my education in clinical psychology, to work with children with mental health illnesses. My dad is Bipolar and has symptoms of schizophrenia but because he lives in Dominican Republic he has not been re-diagnosed and we have yet known what is really wrong….with that said, i know how scary and sensitive it can be to feel as if you are afraid of someone in your own family. I hope Jani is doing well, and so are the rest of your family. Stay strong and pray, God can give you the strength you need to get up every morning and keep dealing with this illness- even though i think he is already watching over your family and doing this for you! You guys (both, your wife and yourself) are inspirational individuals that serve as role models, to so many parents that are dealing with children with mental health illnesses regardless of the disorder. I will pray for your family. Keep sharing your story and fighting for your daughter…YOU ARE the definition of a true loving father….

    my best wishes, God bless,
    Lisa

    Note from Michael: Thank you, Lisa, and I am glad we inspired you to want to work with mentally ill children.

  52. I feel badly for you & your family that there are not any facilities that are equipped to handle Jani, that is just not right. But, I’m not sure I can agree with your comment that if you had known there was schizophrenia in both your families, you still would have had children. What is going to happen when she is an adult and decides she wants to hit someone? I saw on Oprah that she hit another child when she had one of her episodes. Sometimes, I think people need to think alittle more about there decision to bring children into this world knowing it will be a burden on society (not that you knew), I’m just saying.

    Note from Michael: Who are we to say that a person doesn’t have the right to exist or the right to as happy an existence as we can provide simply because of some genetic abnormality? It isn’t. To go down that road is to start deciding the value of a person’s life. But here is the thing. One of the few things that we know for sure about schizophrenia is that it has some connection to creativity. “The Mad Genius” is a bit of cliche, but there is some truth to it. We have to ask why, if those with schizophrenia have no value to our society, has schizophrenia survived in our gene pool? The answer is that if it is connected to creativity, creativity has value and is necessary to our survival as a species. My point is that if an illness still exists after tens of thousands of years of evolution, it must have some benefit, even if that benefit is not readily seen.

  53. I just finished watching your story on Oprah show. I am so overwhelmed and my heart goes out to you, Susan, Jani and little Bodhi.Thank you for sharing your story. I have no solutions or cure or any suggestions that will help, but always remember that my family and I will always remember and pray for your family and ask the Universe to shine Divine light on all of you.
    I still believe in the power of the mind and from your story, I am convienced that as Jani grows up with your love and protection, she will be able to controll these hallucinations with her mind.
    Don’t ever give up on love. It is the most powerful force in the Universe. Stay strong and always remember that there are people who care for you. Thank you so much.

  54. What a beautiful little girl you have.
    My sister has schizoaffective disorder.She has had a battle along the way,
    all of us with her but today she is stable on her medications and lives in an assisted living apt.complex.We
    accepted a long time ago that her life won’t be the same as others,but its a life and its precious and we(her
    family) love her.She is active with her friends and in the community.She is loving,giving,upbeat and fun loving.She is the life of the party at family gatherings and all her nieces and nephews love her.
    She has a boyfriend.
    When the voices come,she knows what they are and she has learned how to manage her disease.This year
    on her birthday she will be 46.
    Love will get you through.

    Note from Michael: Thank you, Rachel. Your message gives me hope and provides a nice answer to the question above of why I would still have had Jani even if I knew she was going to be mentally ill.

  55. WOW
    I just sent you and your wife a long note about a connection from our Brains to our gut. and what gluten sensitivity can cause in our brains.
    This was before I read all of the comments on this page. I will not say force Jani to try a gluten free diet. I also will not say that God will take your pain away. I will also not judge your choices. What you all need is support! What you are doing to bring awareness to this is wonderful. There should be a humility displayed from average people to the mentally ill. You are absolutely right about the “creative maniac”. During my daughters worst days, she was still years beyond other children. Our brains our so complex. What we call mental illness is just different than anything we can understand. Human nature is to try and understand everything around us, but every now and then there is something/someone so great that we can’t figure them out – That’s Jani. Great job for loving her unconditionally.

  56. My Daughter & Jani’s Story gave her more reassurance
    My Daughter is now 21 and goes to school at the University of Virginia. When she was 14 she chose to work in a Day Care that had special needs classroom. She assisted the Teacher and loved to work with these children, she used to tell me about some of the children that were really having troubles, and she used to think of ways to distract and help them. Sometimes she came up with good ideas, and I wonder if that was because she was only 14-15 at the time and could relate a little better to what a younger child needed. She worked their until she was 17. After that job she started working as an aid to help a Mentally Ill Teenager, I forget what the disease is called, it’s rare. But she spends about 15-20hrs a week with this teenager during the summers, doing various things. Easter Seals used to pay her for this, but now the mother has to pay a portion since the funding was cut. In November my daughter will be applying for the Occupational Therapy Program, now they only accept 35 kids, and she is so worried because it is all she has ever wanted to do. But hopefully with her drive, and past references they will see how dedicated she is and accept her. It’s not like she is getting into the field because it pays well, and that is obvious by her actions and job choices since 14. Well I taped the Oprah Show for her and she watched it today, she was so moved. It also made her want to look into what she can do after she does get her Occupational Therapy Degree. She said she would love to work with children like Jani. She also asked me to ask if you ever thought of getting someone to come in for an hour once or twice a week to just spend time with her doing small things. I know my daughter used to get paid from United Seals for spending time doing various things with her friends sister. I give my daughter alot of credit, I personally know I couldn’t handle it, but she gets enjoyment out of trying to help. I really hope that you keep fighting for better resources, I have seen what strong willed parents can do when fighting for their children, and I have no doubt you will make your mark. My heart is with your family and I really wish you great things for all of your futures.

    Note from Michael: We used have psychology students come work with Jani as part of an internship set up by a professor at a local community college, but the college abruptly ended it a few months ago over safety concerns (as Jani can be violent).

  57. Survivors
    Like most commenting on your blog, I have seen Jani’s story on 20/20, Oprah, and through website info, which is how I came across your blog. I am fascinated by your daughter. My heart goes out to you, your wife, your young son and ofcourse Jani. I can’t imagine the struggles you all face on a day to day basis. I worked with children with autism for many years and though my job was hard and exhausting (but very rewarding), I always made sure to remember that at the end of the day, it was the parents/family that dealt with the hardest part. You never know what one has to go through to maintain the quality of life for their kids. You and your wife are doing a tremendous job.

    I studied child development/psychology and have always found schizophrenia to be an intriguing, albeit devastating, mental illness. Thank you for sharing your story and making others aware of the effects of this illnes. Too often, people are overwhelmed and unforgiven of individuals with schizophrenia, not understanding that their minds/hallucinations are completely controlling them. Jani’s story opens the door for others to become more aware and understanding.

    After seeing the programs about your family and reading your blog, I truly wish I was a CA resident, living near your family and able to offer my support with more than words. I treasure the children that are touched with a unique sense of living….it is why I pursued the life path of working with autism and the children/parents and who deal with it every day. I hope that you are able to find the help and support that Jani needs as she grows. Blessing to you and your family.

  58. I Care!!!!
    Dearest Schofield Family,
    My thoughts and prayers will now be with you all, always, my eyes, my ears, my heart, will be looking, listening for help. I believe anything is possible. Please never give up hope. Reading Jani’s story, your family’s story touched me deeply, tears ran down my face not of saddness but of love, you are both incrediable parents, Jani an amazing child, you are all blessed to have each other!! I wish I had answers for you but I don’t. I do believe Jani is extraodinary, we should all listen to her as she can teach us about what the true meaning of love, life, and the courage to live it!!!

  59. Thank YOU~
    I first learned about Janis’ story when Oprah aired the show the first time. My oldest daughter (15 yrs. old) and I just sat there is complete silence with tears running down our faces. We cried for many reasons… for your beautiful Jani and her struggles, for you and your wife trying to just hold on to her, for Bohdi and Janis’ relationship together, and for my daughter and I. We cried because your story helped shed light on my own struggles with my youngest who is 9. I saw my youngest daughter in Janis’ friend, Becca. Like you and your wife, I have know from the time that my Abby was born that there was something different about her. I, too was dismissed by the Pediatrician, family members, friends. My husband and I tried eliminating different foods- We were sure that her behavior was related to colorings and additives in food. She saw a Neurologist, an Endocrinologist, a gastroenterologist, two psychiatrist, and a pschologist… She has been diagnosed with ADHD… they prescribed her medication, but, we can not get her to take the pill- because she is convinced that I am trying to kill her. We took her to the psychologist to get help for the anxieties… and have found out that she hears voices and sees things… mostly ghosts or shadows. I was shocked by this. I thought it was her “imagination”. Her moods are all over the place. She hits us @ times. The psychologist that was evaluating her, told my husband and I that she is going to refer us to someone else, becuse our daughters “case” is a little more complex than just ADHD and anxieties. She brought up the diagnoses of bi-polar and schizophrenia… my husband and I just are exhausted from all of the docotrs opinions… every day life of trying to “keep the peace” in our house, trying to maintain our marriage, and working full-time. Janis’ story has helped me to know that there are other families out there searching for answers. Seeing you and your wife fight for your daughter… has given me strength to keep fighting for answers for my daughter. Thank you for sharing Janis’ story and the story of your family. I will keep you and your family in my prayers.

    Note from Michael: Melody, there are a LOT of families out there looking for answers, and every time Jani’s story has hit the media, I have been able to gather more and more of them together. I have set up a private online support group for parents with mental illnesses. There are more than a hundred families in it now and all of us have been through exactly what you are describing. I would love for you to join. Here is the link: http://health.groups.yahoo.com/group/parental-support/

  60. I found Jani fasinating after I watched your show on Oprah last year. I have thought of her and you (her parents) so often…..I did not see the other shows in May of this year because I didn’t know they were on tv. She is remarkable and you are remarkable as well. There is something about her that is so charismatic, but I can’t explain it. You should be so proud of her and of each other, for what you have been through as a family. You have brought a major awareness to all of us. I hope to be able to follow along with how you are all doing as the years go by. I send you my best and know that there are people out there who think of you and admire you and are praying for you. I hope science continues to improve with help for Jani, and as she gets older she will understand more about her illness.

    Note from Michael: I am incredibly proud of her. She and other kids I have met like her are the toughest people I have ever known.

  61. Amazing little girl
    Hi Michael, Susan, Jani & Bodhi,

    What a truly amazing family. I’ve raised 4 children alone after my husband was tragically killed on the job. 4 children under the age of 6. My husband died in 1993, the day before father’s day. I remember feeling like there were days I was just going to quit. I was giving up. It was too hard to do everything, every day all by myself. I would question why God would do this to me? To our family? How could he take away my husband at the age of 26? How could God take away the father of my children? If I wouldn’t have had my children I know that my grief would have consumed my days and nights. Grieving or not, my children needed me and I had to face things head on when I didn’t think I oould do it. Amazing what you discover about yourself along the way isn’t it?

    Your family and my family share a common thread. We refuse to give in, or give up on our children. Days are long, nights even longer. It’s never ending. And for as many times as I thought to myself “I cant do this any more”, I’d still get up at 5 am and face another day unsure of where it would take us. I’d finally finish reviewing homework etc around 12:30am, and wake still sitting in my arm chair with the alarm clock flashing 5:00. God gives us no more than we can bear. On days that I felt like I was dangling from string, I’d questioned if God might have me mixed up with someone else! But every day that passes helps build a solid, reliable foundation for me to parent from. It wasn’t perfect,and it wasn’t always pretty, but it still counted.

    My children are now young adults. My twin boys are almost 20. My daughter is 23, and my son is 22.

    Jani’s story has touched more lives than you know. It will continue to branch out as others hear it too. I will be making a cash contribution this Friday to help you continue Jani’s journey. Jani matters to me. I wish you much success in finding the answers and the avenues it will take to make sure Jani’s journey continues to forward.

    Note from Michael: Thank you, Laura. You are right. It is one foot in front of the other and slowly but surely the days begin to rack up.

  62. i love her
    uhm.. i dont know how to start off.. i truly think that ur daughter is beautiful i thought that when i saw her on oprah.. i can relate to her thou not the hallucinations b.c i am a girl who has adhd but at the same time gifted, anxiety- panic attacks and ocd and borderline from my living situations growing up… i went throug the same process she did i had everything from autism to bipolar put on me.. i was hospitalized for depression from the borderline and the other time for anger which had to do with borderline.. i understand why u say that u want jani to be happy b.c i was old enough to understand and i became down b.c they put the label on me but with praying and stuff like that i am a lot happier.. i think that the best thing is lots of fun and a huge support net b.c that helped me b.c of a choatic home life and its effect.. good job with wat u rr doin she will be happy….

    Note from Michael: Thank you.

  63. A special kind of eyes
    That’s what my mom calls it. Special eyes. I have been schizophrenic since age 8. From the beginning, it was a struggle to fit in with people that seemed to already know who they were. I won’t lie. I was scared when the hallucinations began. However, I held so much back from the prying eyes of my caretakers, my mother and grandmother. Like Jani, I have animalistic hallucinations. Although mine are insects. Hundreds of them. Two of my constant “companions” are aliens that look very similar to centipedes. They are Red and Green. From the moment I could hold a pencil, I drew what I felt in my confused soul, insects from another world, creatures I could actually see when I closed my eyes. Red often says that God sent him. His friend, a female named Green, never talks but she helps me paint and draw. How she does this is a secret even to me. Red says that she loves me, like he loves me, probably one of the few that ever have. My father was very abusive phsycially and emotionally. My father’s family is littered with mental disorders, so I assume that’s where it comes from. At any rate, my illness has been a downward spiral from the start. I often would jump from trees, believing I was a dragonfly, like Burgundy, another constant hallucination. Currently, my foot is broken in two places from the last time I threw myself off the roof. Tan often is the bad guy in the game. He is a wasp, one of the only insects I fear. He tells me to hurt myself with anything I could get my hands on, or, better yet, injure others so that he can, as he says, drink all of their colors.

    I cried when I read your story. I saw the video on televison and just had to come see how she is holding up. I wish I could meet her. She sounds even braver than anyone I have ever met. It amazes me though that she was lucky enough to have the full love and dedication of her parents. Please never forget. You are priceless to her. She may not realize it yet, and she may never realize it, but she needs your support. And your love.

    I will be watching to see how she is coming along. I know so little about her compared to you, yet I feel the instant connection of understanding her situation. We all need a shining light in the darkness of schizophrenia, and Jani is all that and more.

    Note from Michael: Wow, Brianna, Thank you for being so open and honest. Your story really helps me further understand what life is like for Jani and, actually, gives me hope. I know you are still struggling, but you are still alive and are present enough to write to me. In many ways, your hallucinations are the closest to what Jani experiences of any other person I have ever heard from. Thank you so much for sharing. I don’t know how old you are, but I do have a private online support group for adults with mental illness, the sister group to my parent support group. The link can be found on my “resources” page.

    Keep coming back. If you don’t mind, I would like to tell Jani about you and Red and Green and Burgandy and Tan.

  64. Jani has truely inspired me..
    I never knew the real meaning of schizophrenia until I saw Jani’s story.
    I found myself one day just skipping through channels on my TV. I ended up just stopping at one channel and I decided to go on my laptop. But I started to hear the words “Schizophrenia” and I looked up to see what was on TV. Then I saw this beautiful little girl, and I decided to put down my laptop and watch. That’s when I saw Jani and your family’s struggles with her Schizophrenia. I immediatly just fell inlove with Jani, not out of sorrow, but from the way your family holds up and how you can see the willingness and fighting spirit in Jani’s eyes.
    Jani might have a very bad case of Schizophrenia, but she is one in a million. Not just because of how rare her case is, but also how much your family loves her and cares for her. She may not be lucky having schizophrenia, but she is a very lucky little girl to have such loving and caring parents.

    My heart goes out to your family, and I hope that one day somebody will find a cure for this mental illness.

    Nikki

  65. thank you
    thank you for telling your story, my heart truly goes out for you and your´e family. Janie is a lucky girl to have you and your´e wive, and I admire your´e strength.

  66. My dad recorded the discovery program about January earlier this summer (I’m a psych major, so he thought I’d be interested in it) and I was inspired by your family. You guys are amazingly strong and loving parents. I know you must go through so much every single day to help your daughter in any way you can. Schizophrenia is a terrible illness. I know many people on have posted that here, but it’s true; your whole family is inspirational. I wish the best for your entire family!

    P.S. I just became a fan of the Jani Foundation on facebook and am now following it on twitter. Unfortunately, as I am only a college student and I live Texas (far away from where you are), I assume there is probably very little I can do to help. However, if there is some way I COULD help, let me know. If not, I will keep your family in my prayers!

    Note from Michael: If you are interested in perhaps volunteering for the Jani Foundation once we are up and running please email Cindy Craddock, our executive director, at cindy@janifoundation.org.

  67. Stay Strong
    I live in South Africa and last year your interview on Oprah was aired here. I only just remembered you had a blog and googled it, but since I found out about Jani she has constantly been in my thoughts. My family has a history of mental illness with schizophrenia on my mothers side and my mother and brother(who is 16) suffering from severe depression as a result of chemical imbalances. My brother’s situation has been incredibly traumatic and finding the right medication can be horrible. Both my mother and him are on heavy anti-depressants. I have also suffered with depression, but not as severely as it was emotional based and I have worked to over come it with therapy but not needing anti-depressants.

    My message to you and your family is to stay strong and continue to give Jani the love and support cos as i know, that is the thing that can get you through so much. Let her know that people around the world think of her and want her life to somehow get easier.

    Take Care and Much Love.
    Peace 🙂

  68. stay strong
    Hi.. I am from South Africa and your interview on Oprah aired here recently… Ever since then I have wanted to send a little bit of a message from somewhere else in the world. My family has a history of mental illness on my mother’s side with both my brother (who is 16) and my mother suffering from severe depression resulting from chemical imbalances in the brain…

    I just want to tell you that I admire you so much for giving Jani all the love and support she has as I know that that is all that anyone needs. Even if you cannot tell Jani, I want her and you and your family to know that people are thinking of her even thousands of miles/kilometers away and wish a long, happy life for her.

    Take Care and Much Love..
    Peace 🙂

    Note from Michael: Thank you. That means a lot.

  69. I’m 17 and I am undiagnosed, but even with self-diagnosis, there is no shadow of a doubt that I also have schizophrenia (latent, at the very least). I have suffered from it for 2 years (is this child onset, adult onset, or a grey area?), the first being a living hell in which I was completely consumed by fear and despair. Through introspection I have more or less determined delusions from reality so I feel a lot better now, but I still have unwanted delusional thoughts which may or may not manifest themselves later. I have almost completely withdrawn whereas I used to be very social, but that is ok with me. Being undiagnosed, I am also unmedicated. I don’t trust doctors to “help” me with such an enigmatic disorder. I want to know exactly how these medications would work on my mind; are they stopping the problem at the source or just blocking the extra dopamine that so many schizophrenics seem to have? What about taraxein? Researching it more might prove fruitful but all articles about it seem to be buried under dust and I don’t understand why. I feel like the doctors don’t know any more than I do, and they’re not doing all they can to find out more. Because of this, I try to read all I can possibly find about schizophrenia and psychosis, hoping to piece together the puzzle and maybe even discover a more effective treatment. There must be one out there.

    I think I read somewhere on this site that you don’t want any unconvential or home-type treatments, that you don’t believe in a magical cure. I’m not sure if this fits into that category, but it is very safe and doesn’t hurt to try. My suggestion is niacin. I think other B vitamins might help as well, and from what I know they are water soluble (niacin is for sure) which means the body can easily get rid of what it doesn’t use or need.
    I recommend this article with great enthusiasm:
    http://www.rawfoodinfo.com/articles/art_niacinforpsychosis.html

    It claims that “Schizophrenia is vitamin B-3 (niacin) dependency” which is probably not the whole story, but at least it helps. The following article is extremely interesting to me and has some biochemistry theories on how schizophrenics might process adrenaline differently and HOW niacin could help:
    http://www.schizophrenia.org/crackup.html

    I hope these help. Your daughter is very brave and I am praying for her.

    Note from Michael: Yes, it is an enigmatic illness, but so is every illness. Each person has such a unique biology that how we will react to any medication, from Thorazine to penicillin, is a stab in the dark. I have no problem with vitamin therapy. It makes a lot of sense and probably is beneficial. My problem is with using it or any other therapy as full replacement for medication. Additional therapies should be in support of medication, not a replacement for it, because so far medications, although far from perfect, are the best option we have. It is still the most effective treatment. I say why make your life harder than it is by not taking medications? Obviously, you have to evaluate how you feel with the side effects, but simply agreeing to try a medication does not constitute a lifetime commitment. You are still you.

  70. I found your website after seeing part of the Oprah episode about your family. I’m sure you’ve been told this a million times but I am amazed and touched by the depths of your love for, and dedication to, Jani. I can’t begin to express how important family support is.

    I was diagnosed with bipolar disorder at the age of 22, after living with the illness since my early teens. When I began experiencing symptoms I didn’t understand around the age of 13 I reached out to my mother. This began a decade long cycle of constantly looking for support where it didn’t exist. I believe my parents meant well, but they couldn’t cope with my intermittent rage, depression, insomnia and compulsiveness. I think they allowed themselves to ignore the problem because I was highly functional – I excelled academically and athletically – but I was miserable. In hindsight I have realized that it takes an unimaginable amount of strength to raise a mentally ill child. I am, of course, not saying that my illness compares to Jani. The severity of her illness makes your unconditional love even more incredible.

    I am also writing from a different point of view. Once I was finally diagnosed at the age of 22, I was extremely lucky to find an excellent psychiatrist and the right medication combination relatively quickly. I just turned 25, and although I know this will be a lifelong battle, I am on the right track. The year after my diagnosis, I was accepted into medical school which has been my dream since childhood. I am working toward becoming a pediatrician. Some day I hope that my experience will help me be a better doctor.

    I’m not sure if any of this is helpful to you. I just felt like I couldn’t read these stories and blog entries and not express how amazing you and your wife are.

    Note from Michael: I am thrilled that you want to be a pediatrician. It has always been a struggle to find pediatricians that understand childhood mental illness so I definitely think your experience will be a benefit to your patients.

  71. I just watched the documentary about your family on Discovery Health and felt compelled to read more about you and your daughter online. She is so blessed to have you and your wife — if only every child in this world had such giving, loving, selfless people as their parents. I hope you are surrounded by the support and encouragement you so richly deserve. I also hope that January enjoys a long life full of joy. God bless all of you.

    Note from Michael: We get emotional support from all of you and support from the other families who are going through the same thing.

  72. Not knowing
    I grew up with a sister who was a schizophrenic. She was diagnosed about the age of 18. The things she heard and saw, I can only imagine the terror she must have felt. I do remember my mother having to commit her first born child to a mental facility and the things that occurred over the next 30 years. Very scary for myself and other members of my family as well as my sister. Later as adult in her 30’s she did participate her mental health well being, whether it be meds or therapy. That is not to say that she didn’t have difficulties as her mental health counselor said she was the worst case of mental illness he had seen in his career. Against medical advice, she became pregnant and gave birth to a very bright talented daughter, who fortunately did not inherit this disease. Her daughter continues to thrive as a young woman in her 20’s who is a well educated college graduate. Sadly my sister died in 2006 at the age of 50. It was not directly associated with her illness, but indirectly. My first thought was that where ever she was, she was no longer mentally ill. Had she lived she would have been a quadriplegic, unable to speak or care for herself and still severely mentally ill.

    Maybe Jani can have a life with some semblance of “normality”, whatever that is, with the foundation you have built, medication and therapy.

    My thought was this has been the only life Jani has known. She did not live another life as my sister did before she became ill. Is that worse or better?

    I applaud what you do and the strength your family has.

    Note from Michael: Wow. There are so many deep questions here. I can’t answer them. I just try to give Jani the best life I can.

  73. Your story touched me deeply. I raised a mentally ill child as a single parent. The diagnoses have ranged from ADHD to Bi-Polar to Psychotic. He is extremely intellegent and a talented artist. Unfortunately he is also very disorganized in his thought processes. I would love to say I was as good a parent as you are with Jani but, I would be lying if I did. I do believe I did the best I could with the skills I had at the time. Jani is very blessed to have you both as parents. My sons father is still convinced there is nothing wrong with our son that a good beating won’t cure. Needless to say he is no longer in my sons life. Finding help was almost impossible. And more often than not my sons mental illness was discounted by mental health workers who did not see him but for an hour or two. He could usually maintain to a certain degree and then would fall apart at home where he felt safe. I pray that Jani’s story and the work you are doing will help create a better world for all those who suffer mental illness. God Bless and keep you and your children.
    B.R.

    Note from Michael: I am certainly no saint. I have made my share of mistakes as well. There is no preparation for dealing with this. Please consider joining our private online support group for families with mentally ill children. Whether your son is grown now or not doesn’t matter. You would find you are far from alone. Here is the link: http://health.groups.yahoo.com/group/parental-support/

  74. Hello, I was appalled by cindy’s comment suggesting that Jani is a burden on society, but true to your form you answered her patiently, lovingly, and unselfishly. My first response as a parent would have been anger, and possibly even to lash out. It is evident that you have probably had a good amount of experience defending your child and have really evolved in dealing with that. Kudos to you! Judging by the comments posted here and how I feel as well, Jani is not a burden. She has much to offer. Maybe not in the way people conventionally see contribution, but definitely much to offer. (if only everyone was as creative as Jani)

    I have a bachelor’s degree in science and from what I’ve read you trust scientifically founded treatments. I truly believe though, that it is the love, creativity, and personal sacrifice of you and your wife that has given Jani her happiness and success that you experience with her. What a triumph of the human spirit. I am happy though that there are medications available to assist you in your care of your daughter. Psychiatry can very much be a trial and error science as I’m sure you know. Just know that science is not everything and don’t put all your faith in it and become content with labels, it is labels after all which are preventing your family from receiving the services you so desperately require and deserve.

    We are complex and fascinating beings, I really believe it will be your love and endurance that will find the answers you need for Jani, not science many of which you already have- acceptance, patience, love, hard work.

    My daughter was much like Jani as an infant and toddler, sleeping very little, reaching milestones much quicker, speaking words at 3 months, potty trained by 11 months, knowing alphabet & numbers by 15 months, geometric shapes by two, playing chess at three, and reading by four. She was fitful and demanding also but somehow she outgrew her mood swings and aggression and never developed mental illness. Who knows why Jani did, but there is a reason for her being here and never let anyone ever tell you she is a burden. ” I’m just saying”

    Joanna

  75. Hi Michael, I came across Jani’s story on another website and it just grabbed my heart. My husband’s sister has been a life-long Schizophrenic, she was diagnosed at 13 – but I believe showed symptoms much earlier. She was also a physically exceptionally beautiful child, and extremely bright, although her symptoms were less severe.

    She just turned 57 this year, and is currently recovering from a severe Lithium toxicity episode so is back to square one in a sense as far as being manic, angry and paranoid. Finding a workable balance of medications can take months sometimes. She had a rough time as young adult, mainly because she didn’t stay on her medications and her parents died when she was still in her early 20’s. She was lucky enough to qualify for a transitional/managed living and residential program for the last 15 years, and the quality of her life has been better than we could have ever imagined. There are ups and downs, but all in all she’s doing very well. My husband’s parents would have been so relieved and grateful to have been able to watch her blossom at any age – and she really did, and will again I believe.

    Interestingly, she had a food obsession as a very young child – and when she is decompensating she gets very aggressive and violent over food issues. I wonder what that is about? She also showed violent tendencies toward their youngest brother, and was found several times standing over him with a knife while he slept, and also injured family pets. When she is uncontrolled, her weight bounces and fluctuates at an almost unbelievable rate, it’s an issue we always have to strictly outline when she gets released into her program – unfortunately the longterm side-effects of so many psych meds result in thyroid disease, diabetes or blood pressure and organ damage, so in that sense weight control becomes important. We pick our battles though, in the end it comes down to quality of life for her; and making choices and having free will is just as important as healthy eating habits in some cases. In other words, if she wants ice cream and not having it will make her feel diminished in some way – we buy the ice cream, and take a walk while we’re eating it…

    I know how exhausting and daunting it can be to love and care for someone who seems to be fighting against their own survival, while you are expending every spare resource to ensure it. I also now how incredibly frustrating and diminishing it can be for you when well-meaning people offer advice that has no bearing on your reality. If this illness could be controlled by diet, herbs and exercise I am POSITIVE there would be a Nobel Prize-winning psychiatric breakthrough, covered in every major publication in the world. There is no therapy, behavior modification, diet or magic spell that can address or heal true mental illness. People suggesting alternative therapies, while they may be well-intentioned, make me wildly angry: A holistic approach to Schizophrenia has a 100% chance of ending in severe injury or death not only to the person suffering from it, but for other people who may find themselves unintentionally viewed as threat or target during a delusion. Getting advice like that from “civilians” seems implicitly critical – as if WE’RE just not looking hard enough, or being open-minded enough… I feel like telling them to take some LSD and then try to counteract it by eating a gluten-free waffle and doing some yoga….

    This is one area of healthcare where pharmacology (or hopefully soon stem-cell research) is the ONLY thing that works. The fact that these drugs are so unpredictable, and the side-effects are so dangerous and often disfiguring or debilitating, speaks to a gaping blind-spot in our focus on research for mental health issues. Good luck with your endeavors – you seem to have built quite an awareness here – and as sad as it is, it’s heartening to see in the comments that you are truly not alone. My best to all of you here who have these fragile, beautiful children…

    Note from Michael: Thank you very much. Your comment really said it all.

  76. Thank you for sharing Jani with us. She’s a beautiful child, and I have to believe that she’s here for a reason. You’re all in my thoughts.

  77. Ms
    Going beyond sending prayers, etc. where can we donate funds to your foundation? This is something that we can ALL do to help.

    Note from Michael: The Jani Foundation doesn’t yet have 501c3 status so we cannot accept donations for the foundation. If you want to donate just to us to help us pay for the two apartments, then you can donate through the Paypal button on the main page.

  78. I came across your daughters story while watching television late the other night, I didn’t finish watching the show, and I wanted to know more about Jani and your family, so I Googled her and found your website. God bless you and your wife for taking such wonderful care of your child. She has a great purpose in this world, even if it is just to show her parents how strong and loving they are. I also wanted to tell you, no matter if Jani is in her world or ours a part of her must always know how much she is loved. Have hope even when it feels gone, be grateful you know such a wonderful child, and be proud of yourselves for being the greatest parents in the world. I do not know many people who would go as far as you have to keep their family together. That in itself is a great inspiration.

  79. Michael, you and your wife are the embodiment of true strength. The way you take care of and love your Jani inspires me. My mother suffers from mental illness that is nowhere near as severe as Jani’s and yet I still sometimes can’t get past my frustration to love her the way I should. You and your wife, however, love Jani unconditionally. To me that’s harder than it sounds, and you do it beautifully. You commented above that you’re no saint, but to those of us who can’t seem to muster even half the strength that you and your wife have, well, you ARE a saint. If you don’t like that word, then at the very least you’re an inspiration. Jani, despite her illness, really seems like such a special, special gift, and you and your wife are a gift to her. Thanks to your family for sharing your story and showing me that real love is unconditional. I, like so many others, wish you peace and a cure.

  80. I was sent this link by my sister in law. I just read thru your familys story and it makes me proud to know that there are fathers who care as much as you. What a parent will do to ensure a safe and loving enviroment for their children is unbelievable. All of my thoughts and prayers are with you tonight. I pray for a cure and a beautiful long loving life for Jani.
    There is good left in this world and you Michael and Susan are among the elite.
    Good luck in your path to health and life and please keep us updated.
    Jeff.

  81. I read your blog and it was compelling especially since my wife dealt with
    her Schizophrenic brother and his eventual suicide.
    It is an issue that has been apart of our whole married life more so since we looked after her
    mother in our home in her later years

    I wish I could say the same for the Podcast.
    We sat appalled listening to the skit about the Santa Clarita Mental Center especially
    after reading about the garage sale. Then to top it off calling United Way a Scam.
    I thought the whole point of your blog was to advocate for change. After listening to that podcast I wonder if
    you are using your daughter’s mental illness for gain. I pray that isn’t so.

    Note from Michael: Gain how, exactly? What exactly do you think we are gaining from all this? I attacked the Santa Clarita Child & Family Center because they are abandoning Jani and are willing to throw her away to residential despite her progress. What you think the connection is between them and the garage sale I have no idea. The Santa Clarita Child & Family Center had nothing to do with the garage sale. And the United Way has been investigated numerous times for where their money goes. There is a lack of accountability. The Santa Clarita Child & Family Center gets donations from the United Way and then does nothing to help them.

    If you are appalled, so am I. I am appalled that these organizations that are suppose to help children do nothing for them.

    I venture to guess that your wife’s brother died because there was no support system in place. I am not about to let that happen again. I am advocating for change and part of that means holding those accountable who are supposed to, if not help, then at least not obstruct and make it more difficult for children like Jani to stay with their families.

  82. Dear Susan and Michael,

    My heart goes out to all of you, My story is very different then yours. I was married to an social path for many years. My children and I lived a secret life
    for many years with an abusive man.. When I lived with my husband I never knew that he was an cunning puppet master and that all of us were his puppets.
    When the I got scared of him and I had to protect my son i spoke up for the first time and told my family a little about my ex and my sister i n law recommended an attorney. He tried to prove that I was an unfit mother and I never worked.. I gas lighted us held us down my children had no freedom. By living in that
    abusive environment I found much later that we were damaged by being held down etc. I understand how you felt when your daughter was given that wrong
    medicine by the doctors you trusted the most.. My son was given the wrong medicine and I have been scared of the medicine he is taking today Luvox.
    When I was reading about the voices she heard i her head I remembered that my son telling that he could not concentrate in school because of the voices
    in his head.. When he was in college he heard voices in his head and he thought that if he left CU the voices would go away. So he sent to Arizona to visit
    a friend but the voices never went away. I just found out yesterday that all the things he was told to do was wrong and finally he met an physiotherapist
    who he thinks can help him with his COD . I will not go one about my secret life any more to you.. I met a man two weeks ago who is on LA TALK RADIO.COM
    Cameron Datzker 1-818-792-6270I am wondering if you would like to come on the show to tell your story? Let me know and I will try to make it happen.
    I feel my journey in life is to help others because I was not able to help my children… Your story touch my soul you are very special parents.
    Wishing you Love and Light
    Susan

  83. YOU ARE NOT ALONE!
    I saw your story on 20/20 and on Oprah & not to downplay Oprah or anything but she just didn’t seem to get it & unfortunately, that’s the problem with a lot of people. Unless you or someone you know & love has this disease, you don’t understand what it does to the victims of this disease and their loved ones. I know what you’re going through because my mom hears voices almost all the time and they insult her, tell her to do bad things & just make her paranoid. I’ve tried getting her help but she refuses to see Psychs or to take meds. I kind of don’t blame her because the Psych she was seeing wasn’t helping her and she didn’t have a good reaction to the meds- so she stopped taking them. I’ve called the PET Team for her several times & she’s been hospitalized. She lives ALONE, which I constantly fear and feel awful because she’s not engaged & she’s withdrawn. I think she has major depression with psychosis because I’m in treatment for Major Depression (but thankfully I don’t hallucinate). I’m on several meds, one of which is a benzo, which can be very ddictive and the withdrawal is horrific! I have siblings and although I’m the youngest, I’m the only one there for my mom because I truly care about her but it has taken a serious toll on me- I’ve become seriously withdrawn & my depression has gotten worse. At any rate, I wanted to share this with you because I haven’t forgotten the story of your little girl and can only imagine what she and you both go through.

  84. I just read your story and my heart goes out to you. Have you looked at alternative forms of therapy in combination with the drug Therapy for Jani? I am thinking that perhaps, if you have not looked at it, you might look into the services of a Shaman as a way of helping your daughter also.

    I hope that your daughter will be able to find peace someday.

  85. we are all people
    it makes me truly angry when people make comments of not having children because of the chance of mental illness.
    i have DID(dissociative identity disorder) which is not passed through family so who is to say even if Jani was not born schizophrenic that she wouldnt of had other trials in life. we can not prevent everything in life.
    i would be so happy to have such an understanding and loving family as you and your wife. you are truly doing your best for your daughter.

  86. Amazing…
    I was recently diagnosed with a condition called Mixed Connective Tissue Disease. This hit me full force and hasn’t really let up in the year and a half that it has been a part of my life. I got to a point where I was ready to give up. Constantly in pain, tired, and just wanting for my life to end. And then, I see this story of a family who has chosen to fight, no matter what the outcome. It was kind of a slap in the face, a wake up call, letting me know that I am not the only person going through an extraordinary situation in life.
    Thank you for sharing this with the world. And thank you for helping me gain the strength I need to overcome my own obstacles.

    Note from Michael: Thank you. We all need to give each other a lift. We all got something.

  87. your family is inspiring
    I just saw Jani’s story on Discovery Health. Like others that have posted here, I usually have that channel on in the background as noise while I go about my business, but as soon as Jani’s beautiful face flashed across the screen I just had to watch her story. I don’t want to be saddened by your story, because she is Jani is so clearly a beautiful and brilliant child that has brought you and your wife a love that you never would have known otherwise. Congratulations to you and your wife for showing the world what love is, what parenthood is. I am sure that this has been a strain on your marriage, on your ability to parent your other beautiful and wonderful child, Bodhi. I do not typically believe in fate, but it seems that Jani came to you because you have the love and wherewithal to save Jani, so that the world might benefit from her brilliance, but also so that the scientific community might better understand the devestation of mental illness. I have faith that if you can keep pushing the dr.’s and the scientific community, a new treatment will be found, in time to silence the voices that are controlling Jani and keeping her from being the best Jani she can be. You are both role models for parents everywhere. I will hug my kids a little longer when I put them to bed tonight. Thank you for sharing your story and good luck with the charity.

  88. I didn’t know… and I feel for you & your family
    I originally saw the show aired by Oprah….
    My heart goes out to you and your little girl and I hope and pray that some how, some where, some way, you can help her find peace and quiet.
    I was married to a man…. who had been in the “hospital” several times, mostly after suicide attempts (prior to me having been married to him, but after I met him @ 15.. we were not married till I was 30)
    The “I didn’t know” part of this… he told me that while in the hospital they had him on anti-psychotic drugs and that he “heard voices” and “saw things” that were not there. And that he still heard them and saw them after that (and before that) but that he wouldn’t take the meds because they turned him into “a zombie”. He always had physical problems (pain, overweight etc) and he had mental problems as well, depression, anger issues, etc…. he couldn’t (or wouldn’t) keep a job….
    in May of 2007, after being married to him (and not a good marriage, at that) for 2 years, we were splitting up. He was on heavy duty pain killers for his back (he would go thru 180 pills meant for a month or more in 7 to 14 days), and drinking… and he was driving, looking to hurt me… and he drove off the road and flipped his truck over and over and was ejected along with his sister and they both died.
    I didn’t know till reading here, how….. “real” the voices and visions could be / might have been, for him. I always thought he was just sort of…. “making it up”.
    I know that had I known, that they were real, I would have tried to get him to get help, and that would have translated (for him anyways) into me being a “nagging bitch” (again, since everything I ever brought up in the “self help” sort of realm, or “get help” or just “do SOMEthing” realm was being a nagging bitch) and so the knowledge may have only led to the inevitable end sooner… (he tried to kill me once, held me down and choked me around my throat.. I don’t know to this day what made him quit) it would have been him or me dead…
    but I guess maybe knowing or believing, maybe, somehow….. maybe I could have helped him get the help I only now, 3 years and lots of tears later, fully am starting to realize that he REALLY needed
    I guess on that count (lack of getting him help), his family DOES have the right to “blame me” for his and his sisters deaths…. and they DO blame me, and wish that it were me dead and not those 2.
    Altho… they knew (or at least I assume that they did) of his mental health problems long long before I did.
    I dunno.
    all i can say is: I am so so sorry.
    For you and your family and I pray again that you will keep fighting like you have done, and that somehow someday some way, there is help for Jani.

    Note from Michael: Don’t blame yourself. By the sound of things, there was not much you could do differently. Mental illness is so terrible that it takes more than one person alone to help someone suffering from it. It truly takes a village to help those with mental illness. They can be happy and productive but it takes all of us, not just you. But I hope this blog gave you some peace as well.

  89. I watched your story on tv last night and came to investigate today. my brother was diagnosed with schizophrenia when he was 12, they didnt know anything about it then. he is 50 now.. they have closed all the mental health units here in michigan due to cuts/ so when he has an episode we cant have him committed.. and he wont go willingly to a mental health hospital.. thank goodness January is little but when she becomes 18, either she checks herself in or your hands are tied.. it is sad that there is not the funds for this disease.. I hope and wish your family love and prayers.

  90. I saw the Discovery Health program and then looked you up on the web.

    I have never encountered an entity more captivating than Jani! She is so startingly creative, intelligent, and beautiful…like an exotic creature trapped in a universe too small for her. And, just looking at you and your wife’s demeanor gives me faith in the human race…your faces are filled with love and acceptance, not strain and grief. I can’t stop thinking about your beautiful family and thanking God that you are sharing Jani and Bohdi with the world and praying that He gives you strength and fills your children’s hearts with joy.

    When I get to heaven, I think Jani just might be in charge of introducing all the angels…by name!

  91. I just watched the program on Discovery about Jani and I just finished reading your entire website. I was so captivated by this story. There is something so bright and vibrant about Jani. I was so touched by your family and the strength that your family holds within eachother. Jani is so blessed to have such a loving, supportive family who goes to the ends of the earth for her. There are no words to describe the feeling in my heart for you and your family. I have never been one pray, but it seems all I want to do now is pray for you and your family. I wish there was something else I could do. I am making a donation, even though it can’t be much, and will continue to say prayers for your very special, beautiful and STRONG family. I am going to spread the word about Jani, and am sure that everyone who hears her story and sees her spirit will pray as hard as I will. May God bless you and strengthen you and your family.

  92. Truly sad yet inspiring. The lengths you and your wife go through to give your children the best lives they can have are incredible.

    I’m sure you’ve exhausted all efforts and know this already, but if may I suggest, even for anyone else perhaps reading this, pursuing electroconvulsive therapy? It really isn’t as barbaric as it once was, as anesthetics and muscle relaxants no longer make it a traumatic experience. It certainly isn’t a miracle cure, as it takes many ECT treatments to first see effects, recurring treatments (albeit fewer and more spaced between) to maintain any improvements, with continued drug therapy, but recent studies and trials have shown that it may reduce the severity of symptoms in treatment-resistant schizophrenia by up to 71% when administered in combination with medication.

    See these links for more details, and best wishes to you and yours.
    http://priory.com/psych/clozapinenect.htm
    http://www2.cochrane.org/reviews/en/ab000076.html

    Note from Michael: Things have been improving so ECT is not something that we are considering at this time. I don’t know if it is used in children. I doubt it. I know it isn’t as barbaric as people think but it also has about a 50% success rate in terms of having any effect, and honestly, Jani would have to get a lot worse before I could even bring myself to consider running electricity through her head, even if she had no memory or didn’t feel it. Luckily, she has been doing very well lately, with no hospitalization in the last three months now. Fingers crossed.

  93. Mom
    I saw your episode on the Discovery Health Channel last night. I just wanted to wish your family much strength, fortitude and love. I have a very bright 3 year old daughter and I could see her in Jani. Hopefully, a cure or help is on the way for Jani… She’s such a sweetie and deserves to have a wonderful, long fulfilling life.

    Note from Michael: Thank you. Right now, things are going pretty well.

  94. Michael and Susan: What great people you are for sticking by Jani’s side, and making sure she gets the help she really needs! I am an adult who suffers from a mental illness, and my husband has PTSD and is bipolar, and there are days that we are not even sure how to handle things! I have the upmost respect for you and both, and remember always love one another and keep up the communication!

    I saw Jani’s story on the Discovery Health channel on Friday, September 17, 2010, and had to Google your family today! May God Bless you and your family!

  95. Dear Friends,
    I am a 56 year old bipolar registered nurse. I read EVERYTHING I can on depression, schizophrenia – I went through “reactive schizophrenia” at the ripe old age of 19. I was institutionalized for two years of intensive therapy at a place called Chestnut Lodge from 1973-1975. It doesn’t exist anymore. Tragic really for the population who need their help. I had been putting myself in hospital from the age of 17 on, for uncontrollable depression. I lived in Geneva, Switzerland and went from being lively, funny and smart to completely obtunded and depressed all the while receiving therapy from a friend’s mother who called herself a psychologist to a Freudian doctor I fell deeply in love with and remain loyal too, but their therapy didn’t help.
    I want you to do me a HUGE favor. I want you to contact me personally at my e-mail address. There is a whole range of material I have been researching that won’t fit on this post. it ranges from possible thyroid condition to pro-inflammatory processes as the cause of some of these issues.
    For my part, I took lithium from 1986-1996 and wound up with a thyroid stimulating level of 41 and climbing. I am told by my cousin who is an endocrinologist that our family – his sisters, my cousins, almost all suffer from hypothyroidism. If you go to an endocrinologist’s office and look at the charts for symptoms of hypothyroidism, the first symptom is depression. But psychiatrists don’t evaluate their patients for that. At least NONE of mine did. I could have eventually succumbed to the condition.
    When I watched your story on discovery channel I was overcome with the sense that I KNOW your child’s state of mind. I have been there. Now I take thyroid pills – I can think again, I am not fatigued, my hair is not falling out. I don’t want to die, I don’t dissappear inside myself. I am once again, funny, social…
    Do you KNOW that hypothyroidism can CAUSE frank psychosis? It is written in the Merck Manual every year under the subject index of “hypothyroidism”. They test infants in California for thyroid levels at birth to make sure they have it. But no one tests after that. The test – TSH level – is not fool proof. As i discovered in my learning, I googled ” inflammatory process bipolar” and a whole range of articles came up.

    All this to say : DON’T QUIT on your journey. We bipolar people HAVE a real metabolic condition. Just as diabetics were once institutionalized with altered mental status and they discovered it was the blood sugar, so too will this crippling condition be found out and properly diagnosed and treated.
    God bless you all. And THANK you for thinking of us all… and being the wonderful parents you are to Jani.
    I hope and pray I hear from you. I am crying now. My nursing class back in Los Angeles in 1982 voted me “most off the wall” and it is a journey to find some sanity… but I have been happily married since 1988 to a wonderful man who is a physical therapist. GREAT good will happen to you and Jani. Don’t quit. Please write me.

    Mrs. Leslie Van de Ven, RN, BA.

    Note from Michael: No, we won’t quit, ever. You can write me at michaeljohnschofield@me.com or susan at susandschofield@me.com. Jani gets thyroid tests about every three months. It is necessary because of the lithium that she takes.

  96. Please research “thyroid psychosis” and “pro inflammatory bipolar” on google.
    Start there.
    Mrs. Leslie Van de Ven, RN, BA.

    Note from Michael: Jani’s thyroid is tested on a regular basis because of her taking lithium, both TSH and actual thyroid function. Both are normal so far but are closely monitored.

  97. Have you considered that she may be in possession of demonic powers? I have had issues with mental illness including schizophrenia. I believe without a shadow of a doubt that this is what Jani is experiencing. I don’t mean to offend but to offer a suggestion. I haven’t seen anyone mention this. Have you considered this? Considered getting help from clergy?

    Note from Michael: No, you don’t offend me and no, I haven’t considered going to clergy. I have had many people suggest demonic possession so if you haven’t seen it then you haven’t read many comments on my site. My answer is always the same: You call it demons, I call it mental illness. It’s the same thing.

  98. Jani
    Have you considered demonic possession? Please consider this and seek help from a pastor who is familiar with this. I am speaking from my own personal experience. I am not trying to offend but to offer a suggesion. I am sure without a doubt that she is possessed by demonic spirits and needs deliverance.

    Note from Michael: Dear Kim, how can you tell the difference between demonic possession and mental illness? Just curious. If you are so sure, you should be able to answer that question. How is mental illness different from demonic possession?

    As it happens, Jani is the toughest person I know. If there are such things as demons, they are certainly no match for her.

  99. Jani
    jani is under attack from demonic possession. i have suffered for years with mental health problems including schizophrenia. please consider this. you need to take her to clergy who is familiar with this. i believe with all of my heart that this is what her problem is. i know first hand. PLEASE consider this.

  100. No, she is not under attack from demonic possession.
    I’m very sorry to have to put it so bluntly, but the people who are so sure that schizophrenia equals demonic possession, or that what Jani has is “demonic possession” instead of schizophrenia, are people who do not understand schizophrenia. Period.

    Part of what Susan and Michael have mentioned they are trying to do is to educate people about what schizophrenia actually is.

  101. Michael (after reading “A Father’s Journey” and several portions of your Blog Archives),

    As I think can probably be seen from some of the posts you’ve received, many people already know that childhood onset schizophrenia *exists*…they just need to know more about it and what it is, instead of what it isn’t. (Okay, well, if people are convinced that it’s demonic possession, you probably can’t help them there. 😉 [I think that a few people have made it fairly clear that they aren’t merely calling mental illness demonic possession, they’re assuming her to have demonic possession *instead of* mental illness. That’s a bit extreme. The ones who just use a different term to describe the same problems, that’s just a different kind of categorizing.])

    Sadly, a lot of people are aware ONLY that childhood onset schizophrenia exists, and are aware of little more than its existence.

    Increased awareness is greatly needed regarding the following:

    1. As you’ve mentioned, there is good evidence for its being a biological disease (a brain disorder in the physical sense, not just something made up by patients’ stressed minds).

    2. It is not necessarily far more common than previously believed, nor is it a “label” to attach to children who do NOT have hallucinations or violent behavior or even any kind of bizarre mood swings, but are merely unusually quiet and/or imaginative, or have been traumatized and/or abused, or happen to behave in some way that some adult doesn’t happen to understand. It is a genuine but fairly unusual illness, requiring a genuine medical diagnosis. It is not an insult, or a joke, nor is it something common in abused children, common in traumatized children, common in fostered/adopted children, etc.

    3. Children who act like Jani (as opposed to acting in a vast number of other ways) are probably among the most likely to turn out to actually have schizophrenia, not something else such as bipolar disorder, sensory integration disorder, ADHD, etc.

    4. Children who do NOT act like Jani and DO act as if they have some other disorder (usually a milder one than hers) should NOT be assumed to be schizophrenic.

    5. Autism and schizophrenia aren’t necessarily especially similar (except that there does tend to be “withdrawn” behavior in both, but not the same kind of “withdrawn” behavior).

    6. People who really have schizophrenia have at least a serious mental illness, and possibly (or probably) a serious biological brain disorder, and are genuine need of real treatment. People who *don’t* have schizophrenia, but are incorrectly assumed to have it, tend to be in either far less or far *different* mental trouble/anguish and to be either in far less need of treatment or in need of *completely different* treatment. Claiming that people who almost certainly have schizophrenia don’t have it doesn’t help them at all, just as claiming that people probably/definitely have it who *don’t* have it doesn’t help *them* at all.

    7. Not all psychiatrists are genuinely qualified to diagnose schizophrenia or any other serious mental illness, or have any real understanding of which medications in which dosages might be helpful to which person.

    8. The exact same medications that Jani does need and does benefit from (because she does have a serious and fairly unusual problem) are precisely the ones that can be extremely harmful to (and in some cases can even cause psychosis in) people who *don’t* have that type of problem. It isn’t so much a matter of “believing in meds” as a matter of believing that Jani needs hers. (Personally, I don’t “believe in meds” because unfortunately too many doctors believe too much in them and prescribe them for people who not only don’t need them at all but can be seriously harmed by them…not just by side effects, which can harm anyone, but by the mere fact that the person is on the wrong medication or should not even be taking psychiatric medication at all…which is a matter of medical malpractice, not side effects.) (Doesn’t stop me from believing that there are some extreme cases where a few people do need what the rest of us do not.)

    9. People who don’t have a mental illness at all, and are incorrectly diagnosed with one, and people who have a mental illness but are diagnosed with the wrong one, need support against the stigma, the incorrect treatment, etc. People who do have a serious mental illness (in some cases, a biological brain disorder) and are being correctly diagnosed and correctly treated, need support due to their illness, and support for their continued treatment which is working for them, rather than to be told that they “probably have something else” or whatever. It goes both ways. Many people, especially kids, DO probably have something else, not schizophrenia. However, the people who probably actually HAVE schizophrenia…do not really benefit by being told that they don’t.

  102. The following was supposed to appear at the bottom of my previous comment, but was taken out as the comment was getting too long to fit in the space:

    Michael, presumably you and Susan know of many other factors of which people also need to be more aware…my list was of course only a partial list. (Long, but still only partial! ^_~)

    (Note: I don’t have professional experience with any psychiatric disorders, but when you’ve babysat kids who [whether they actually have them or not] have been diagnosed with psychiatric disorders, you tend to start getting informed.)

    (Born Schizophrenic: January’s Story I think pretty clearly shows a child who actually has several of the classic symptoms of schizophrenia. The interesting thing is that I think the publicity for Jani and her friends may actually start pushing the trend more in the direction of showing/interviewing kids who *actually have* the classic symptoms, rather than focusing a lot on kids who don’t, which was the trend for a while. Not that a kid without any of the classic symptoms *couldn’t* have schizophrenia…but since childhood onset schizophrenia has been famous/infamous for a couple of decades, it would be helpful if more people [including more doctors? ;)] actually became more familiar with what the classic symptoms are. Jani has more of them than would usually tend to appear in a kid who *wasn’t* schizophrenic. Lots of kids in the past couple of decades have been labeled “schizophrenic” without really acting as if they had that particular disorder. She’s not one of them.)

    (Oh, and I agree…if there were any demons, Jani would be a match for them!!! ;))

    Best wishes to all, especially Jani! 🙂

  103. Leslie,

    While hypothyroidism can indeed cause depression, irritability, and (rarely) psychosis, *most* people with hypothyroidism do not behave as if they had schizophrenia.

    (Also, in a child of Jani’s age, especially a child who had had whatever she’d had…pretty much since infancy [since birth? since before birth?]…it would be more likely that hypothyroidism would cause retardation rather than psychosis. Mild hypothyroidism does not cause psychosis; severe hypothyroidism, the kind bad enough to cause psychosis, isn’t usual in small children, and when they do have it, it tends to turn them into morons, not into psychotic geniuses. [Apparently you didn’t have hypothyroidism until your late teens, when your brain was already developed. It’s a different kind of condition at that age. Sorry to disappoint.])

    (In addition, giving thyroid to people who do not have hypothyroidism is potentially dangerous and can cause heart trouble and other problems. I know you meant well, but in actuality hypothyroidism isn’t usually what’s wrong with psychotic young children anyway, nor with crabby or tired young children either. Hypothyroidism in adults and teenagers isn’t the same as in small children.)

  104. Ella,

    I think you have adolescent onset…which is usually supposed to be one of the more common ages for it, actually.

    Niacin is another thing which small children aren’t usually deficient in and which isn’t usually all that great for them. Calcium and magnesium might be better, and/or just some B vitamins in general (like a multivitamin complex or something).

    (I was overdosed with niacin when I was a kid. My mother mistakenly believed that I was very irritable, that I probably had a niacin deficiency, that excess amounts of niacin wouldn’t harm me, etc. It probably gave me temporary liver damage, and I’m probably lucky it didn’t give me *permanent* liver damage.)

    (There was some movie a decade or two ago where the young guy and young girl who fall in love were both dosed with niacin when they were kids. He writes a poem to her where he talks about feeling all tingly “like a niacin reaction”. He and she were both extremely lucky if the tingly/itchy hot flashes were the *only* niacin reaction they had.)

    (Anyway…some vitamins can be just as dangerous as some drugs…so be careful…especially with kids…please.)

  105. To Becky
    Becky, have you ever been diagnosed with schizophrenia? I have. It was demonic for me. I’ve experienced it first hand. You say, “part of what Susan and Michael have mentioned they are trying to do is to educate people about what schizophrenia actually is.” From someone who has been diagnosed with schizophrenia and been in and out of hosptials and knows what it is like….maybe from my experience I can educate them. The meds don’t do the trick for Jani. Try something different. I involved God in my illness and today I no longer need anti-psychic meds. It amazes my doctors. I can’t explain it, it just worked.

    Note from Michael: I am happy for you, Kim, but to say “the meds don’t the trick for Jani” is not exactly true. They don’t fix everything, no, but they certainly have given her a level of stability and happiness, once we found medications that worked. I think perhaps the lesson for both of us is that there is no one way to manage schizophrenia. Your way works for you. As does ours for Jani. But I guess the difference is I don’t draw a distinction between God and the medications and other therapies. For me, the latter are also God at work.

  106. mental illness
    Michael, thank you for sharing Jani’s story with the world. Your willingness to do this helps get rid of the stigma of having mental illness and of taking medication to manage it. It never ceases to amaze me that people still try to use religion to explain it. We left the dark ages a long time ago! I was raised by a mentally ill mother. I remember a pastor coming to our house to pray for “satan”to release her from depression and stop making her psychotic. It was weird and embarrassing. Before I had some understanding of mental illness I felt sad and angry that my mom wasn’t like my friends moms. As an adult and a mother myself I know now that she did the best she could. And of course I know now that she wasn’t “demon possessed”. Thank you again for helping to educate our society.

  107. Jani
    I do believe God gives us the medication. By all means if the medication helps you need to take it. I couldn’t agree with that more. I still suggest that you talk to someone from the church, read the bible to Jani, play Christian music, pray with her. Have people from the church lay hands on Jani and pray for her… and keep doing it. I know without a shadow of a doubt that demonic spirits are causing Jani the mental illness where she wants to hurt herself and others. I heard her say that when someone asked her about 400 or Wednesday and there was this little doll beside her she said that they wanted to eat the baby. This is evil and demonic and is not from Jani but a demonic spirt. You all are incredible parents, just incredible. I just suggest you try these things and see if they help. I know they will help but you have to try them to see. I will continue to think of you all and lift Jani up in prayer.

    Note from Michael: It still semantics for me. I the illness as being separate from the child. You just call it a demon. Whatever it is, we treat it in the same way, although some of what you are proposing, like “laying on hands” would be very traumatic for a child, so no, I won’t do that. I am not going to expose Jani to people who don’t know her.

  108. Jani
    Mike, how would you respond to this?

    Matthew 17:14-21

    A Boy Is Healed

    14 And when they had come to the multitude, a man came to Him, kneeling down to Him and saying, 15 “Lord, have mercy on my son, for he is an epileptic[a] and suffers severely; for he often falls into the fire and often into the water. 16 So I brought him to Your disciples, but they could not cure him.”
    17 Then Jesus answered and said, “O faithless and perverse generation, how long shall I be with you? How long shall I bear with you? Bring him here to Me.” 18 And Jesus rebuked the demon, and it came out of him; and the child was cured from that very hour.
    19 Then the disciples came to Jesus privately and said, “Why could we not cast it out?”
    20 So Jesus said to them, “Because of your unbelief;[b] for assuredly, I say to you, if you have faith as a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; and nothing will be impossible for you. 21 However, this kind does not go out except by prayer and fasting.”

    Note from Michael: I say I agree. The story is a metaphor, as most writers used then, about the nature of faith. It has noting to do with believing in demons. It has to do with believing in yourself that you can do God’s Will without having to wait around for God to do if for you.

  109. I was given this website from my daughter psychologist. I just wanted to thank you for letting me read about you and your familys journey. My 6 year old was recently diagnoised with schiztophrenia. And it has been very hard. I will pray for your family..

    Note from Michael: Dani, we have a private online support group for parents with mentally ill children. If you are interested in joining, we would love to have you. The link is: http://health.groups.yahoo.com/group/parental-support/


  110. I am seventeen and am taking an advanced compositions class for college. As part of a requirement paper, I decided to study schizophrenia. I stumbled acrossed Jani on 20/20 and Oprah on YouTube. I was totally in awe when I watched what your family goes through. I couldn’t even imagine. She stole my heart completely and she became the inspiration for me to write about changing the way hospitals handle their patients and care for children as well. As a nurse, my mother deals with mental illnesses on a daily basis. Both of us give our love to you Michael, Susan, Bodhi and especially Jani. We hope and pray that she lives a long and happy and fulfilling life with a family that truly loves her. My prayers are to Jani 🙂

    Note from Michael: Thank you, Tatiana. Let me know if I can answer any questions for you. I am always willing to work with students researching or writing about child onset schizophrenia.

  111. So…
    I just found this site, and read all through it. I admire you for holding up so well under this onslaught; I know, first-hand, how difficult it can be to live with a family and deal with doctors who do not understand and/or believe young people with mental health problems (particularly female, in some cases).

    I have intractable rapid-cycling bipolar NOS with psychotic features, along with OCD and trichotillomania (fortunately comparatively mild). I’ve been fighting the primary illness since I was 11 and the system since I was 15. I was treated like a hypochondriac for many years before I finally found a doctor who would admit that I knew my own mind well enough to know whether I was simply depressed or not; that my auditory hallucinations, while not nearly powerful enough in scope that I’d call them command hallucinations like Jani’s, were not my imagination; and that being young did not mean I was healthy. My father has mental health issues of his own, including alcoholism, and does not admit to the family suspicion that he, too, could be bipolar (though not rapid-cycling, and very definitely more typed than mine). He won’t have anything to do with psychiatric treatment, despite his abusive behaviour and severe episodes in one direction or the other. My mother died when I was a teenager. I’m very used to being told by complete strangers – and family, and sometimes people I thought were friends – to suck it up and get on with it, that there is nothing wrong with me. (Physically *and* mentally, though I also have the diagnosis of Ehlers-Danlos syndrome, a hereditary collagen disorder that causes dislocations.)

    Basically, the point of my blathering is to say this: Thank you. Thank you for sharing your story, for hanging in there and getting Jani what help you can, for not treating her like an idiot because she’s mentally ill, and for being good parents. It lifts my heart to know there are people like you in the world.

    Note from Michael: I don’t think you are blathering at all. I thought you made a particularly powerful point about the assumptions that because someone is mentally ill or are young means they don’t know their own mind. Excellent point. Jani tried to tell the doctors in her first two hospitals prior to UCLA that she had schizophrenia but they wouldn’t believe it. Even UCLA didn’t at first but by virtue of her being there so long eventually they had to accept it.

  112. From Tasmania, Australia.
    I wish your family many happy days together, with laughter bursting from the windows of your home(es). I don’t know much about mental illness but I know about love for my children. When it gets desperate, know that there are people all over the world, just like me, sending you their love. Thank you for sharing your story.

  113. Sending Best Wishes
    I learned about you and your daughter’s journey in the LA times. I have been following your story through those articles, and just read your website. I feel that you are courageous parents and it completely touches my heart that you two have stood up to help her as well as you have. I always send you best wishes.

    Note from Michael: Thank you.

  114. Jani
    I first saw this story on Disc Health and was glued to the tv. This story is on again tonight. I am a graduate student in psychology and Jani defies all laws and rules, especially in her IQ and development. This is truly an incredible story and you are incredible parents. If Jani had such an impact on me, I cant imagine how special she is to her doctors and staff at UCLA. I truly wish you the best and a happy, peaceful life.. I wish there were more answers about the brain and a magic pill that will stop the numbers and put her mind to rest and allow her to sleep and function normally. Please keep us updated!

  115. Praying for You
    I would have never known about your family if it were not for my 5 year old daughter, she loves to watch Discovery Health and she had this on last night. At first I was not in the room when she started watching but after putting her sister to bed I came in and she was asleep by this time and I looked at the TV and was immediately taken in with your family, your life, and your passion. You guys are truely amazing and I pray that God continues to keep you strong and I pray that Jani will always feel and know the love the two of you haven given her. God and Love is the key to everything I know your family will make it through this because look how far you’ve come already. I’ve been complaining about my 18 month old’s chronic ear infections and after watching your story I realize how stupid I have been and that I have no right to complain about anything. It saddens me that in order to function you and your wife have to live in seperate homes and I hope in time your family is able to live toghether again and I know it will be possible. I will keep checking your site and continue to pray for your family and I have to give my baby girl big hugs when I get home for being mature enough to have your story on last night. Thank you for sharing your story with us and God Bless you always.

    Note from Michael: Thank you. That is quite a little genius you got there if she is watching Discovery Health at 5 years old!

  116. In response to what Lost child in the system
    First I want to write and say how heartbroken I was when I learned of Jani’s story and that I admire the entire Schofield family for all that they have been through and how well they have done in handling with such a difficult diesease and all the hardship they have been thorugh. My heart and prays go out to you and I hope one day Jani and others like her will be able to lead a happy, healthy, and normal life :).

    Now for Lost child in the system, I was reading through your comment and I noticed the part where you said “Worst of all she got a streph infection 4 years ago and it went to her brain. It is call PANADS. She has never been the same. They dont know how to treat it how to fix it.” Now I dont know if this will help or if you’ll ever read this but I was watching the show called Mystery Diagnosis and it was about a boy who got strep and instead of the strep antibody defending against it like it was supposed to it started attacking his brain which caused him to have OCD and other things after getting no results from medication his mom finally took him to a specialist and they were able to give him something that helped stoped the OCD and he is now back to normal after some therapy. I know I didnt do a very good job of telling this story and Im am truly sorry I just wanted to let you know if you want to check it out that there was a case like this and that there was a cure. I suggest looking up Mystery Diagnosis Pandas and checking out the links it should give you some answers. I hoped this has helped 🙂

  117. Dear Schofield Family,

    I watched your Discovery Health program the other day and how brilliant you are with your child. Always willing to do whatever is needed. My brother has had a hard life himself since he was born no doctor has ever been able to tell us specifcally what his diagnosis is.Could be Autism, Asp,Schizophrenia,MR but none for sure it is very hard to go through life not knowing what is wrong with your child or brother. When he became a teenager he started having schizophrenia symptoms. He is almost twenty now and my parents have done everything they can to help him have a normal life. We are still struggling to get him help and get him a correst diagnosis it seems almost impossible. Seeing your story has helped me more than most to be even more understanding of his condition. I will continue to follow your story and am willing to help you and your family anyway I can. We have found that as your child gets older it is even harder to find help and even more than that activities for them to do with other people their own age.

  118. Stimulation for Jani …
    As I read your story, you mentioned she is better behaved, quieter when in crowds .. i.e functions better but gets bored quickly … this may seem cruel / odd for me to say but why not try to build her a glass room just like her apartment somewhere that stimulates here mind 24 / 7 ? I love animals and I would love to live in a glass house amoung the gorilla’s, tigers, maybe a glass house in Bush Gardens, Florida (she relates to animals) or a glass room / apartment above a “chinatown”} I understand that is rather far out, not to mention funding or finding a safe santuary to place this charming little girl. I understand you would think I must be crazy for thinking of putting your little girl on display, but I am sure a safe haven could be worked out but keep her stimulated thru her eyes when she is awake .. something would always be moving, vocalizing, car horns, people chattering, eating, laughter .. she is happier when outside and busy (distracted) .. Everyone has ideas and perhaps someone has a better idea .. whatever works, right Michael .. 🙂 God loves your family … 🙂 Does she have an aquarium ?

    Note from Michael: No, it doesn’t seem so far out, although she still needs people to engage her. Animals alone don’t do it. She has to be working with the animals. I desperately want to buy a farm where we can have all sorts of animals, but I haven’t the money. We are flat broke just trying to keep the two apartments.

    Yes, we have three aquariums: one for a turtle and two for bettas.

  119. Proof vs. Prayer..
    Michael,

    I just read your story and wanted to say that you and your wife are inspirational, amazing and courageous people and I think its important to acknowledge that because the days of natural parental instinct no longer exist in this world. I glanced over some of the comments people have left you, almost everyone offers prayer and im sure they mean well but I myself am not religious. After watching the video and reading your story, I noticed that there wasn’t any reference to god or things of that nature on your part. Personally, I dont have faith in organized religion. I believe in myself and that which I am capable of doing which is why it means so much more to see that you and your wife never gave up or felt like you had reached the end in the search to find a way to help your child. Also, I think its completely insane that you were turned away from the very same facilities that provide care for children who have been abandoned and neglected. I can’t understand why a family would be turned away for seeking help from these places, but if you and your wife were not “functioning” people, you could drop her off at these facilities and they would be forced to stop making excuses and they’d have to take her in. I have a niece who became a ward of the state as a child, and I just wanted to tell you that Maryvale is not a place you would want your daughter to be. The girls there are abused in many ways and when staff is reported they never fully investigate the situation as they claim they do. Even worse, when the children report staff for whatever misconduct, the kids suffer retaliation from the staff who is accused.
    I’m trying not to take up too much of your time but instead of prayer I wanted to offer a thought: As parents, it is easy to see how much you and your wife love your children. Never forget to love eachother. As hard as it may be to find the time, weather it be two minutes, five minutes or an hour.. any chance you have to spend with your wife just do anything to make eachother smile. Talk about something other than the kids for a few minutes to remind eachother that you’re not just parents but also normal human beings. Those moments help fuel the strength and energy to handle all else.

    Thank you for sharing your story.
    -Nicole

    Note from Michael: My religious beliefs are my own. I don’t believe in organized religion for myself but do not judge others for it. I don’t talk about it because my relationship with God or whatever you want to call it (higher power, etc) is my own and the only part of my life I don’t share with the rest of the world.

  120. What a sweet little girl!
    I’m ADD/Bipolar myself – I didn’t have the same problems as a child, or to the same magnitude, but I can relate. (And I could read before I could talk, but when I was challenged in school I struggled. I guess I never learned how to learn.) I saw your program on Discovery Health last night and my heart aches for all of you.

  121. Thank you
    You have such an amazing family, people like you have been put in special positions to help others through your aquisition of knowledge and your willingness to share that information. I have 2 children with high IQs, rages and violent tendencies. The serevity of the situation does not compare to yours, however there have been days when I have been physically and emotionally exhausted from holding my children down during their rage episodes 3 and 4 times a day. It gives me some comfort to know that I am not the only person that has struggled to find a diagnosis and proper treatment.

    Note from Michael: Are you aware of our private online support group for parents of mentally ill/autistic spectrum children? You would find that you are FAR from alone. http://health.groups.yahoo.com/group/parental-support/

  122. RN Support Coordinator of Special Purpose Learning Agency
    Jani could not have asked 4 more devoted, intelligent parents than you two. You’re careful documentation is sure to help doctors & scientists in the search for exactly what is going on in the physical brain of the individual with schizophrenia. As the link between sleep deprivation and hallucinations is well known, I couldn’t help but wonder if that first symptom that Jani exibited, the sleep disorder was not a contributing cause to the developement of the schizophrenia. I know the genetic links associated but hope someday we can learn exactly what switches are at fault and prehaps correct it. Your families exposure of the reality of symptoms are sure to get some of these beautiful minds intrigued and hopefully busy on the much needed research. Your insistance of proper treatment & advocacy is beyond admirable. In my opinion you are both heros. God Bless you all

  123. You guys are inspiring!
    I watched Jani’s story on tv and I just couldn’t pull my eyes away from the TV. To see the fight this little girl has to go through every day must be simply exhausting. To want to do the right thing but your mind to tell you otherwise. I can’t even imagine.
    You two are simply amazing parents. Many others would have given up but you keep going and knowing that the love you have for Jani will get her through. Even when times are tough, she always has a loving family.
    I really hope Jani has some breakthrough and is able to overcome what her mind does. She is a gorgeous, bright, loving little girl who has all the potential in the world and more.
    Best of luck to your family. If you guys are ever in the VA area, I would love to do a free portrait session for your family. Family is what gets us through the toughest of times. Keep strong!

    Note from Michael: Thank you but I don’t know if it is most others would give up or if they are forced to give up by a system that won’t help them. We just refuse to.

  124. I have watched the Discovery Health special on January and the Oprah episode. I hope the best for January and your family!

    Just a question but how is Jani doing now?

    Note from Michael: She is doing fine at the moment. She was released from the hospital again last Friday.

  125. I don’t have any suggestions or advice and no experience with schizophrenia of any kind but I read your blog and most of the comments and Michael, something you wrote really struck a positive chord with me: “You call it demons, I call it mental illness. It’s the same thing.” Isn’t that the truth!
    We all have our demons and they’re never pretty but at the end of the day, we have them for a reason. A lesson in life of sorts. And I’m willing to bet Jani and her condition have taught you and your beautiful family more than you could ever imagine. If only all families were as dedicated to one another’s well being as yours is. Congratulations on being open and persistent in your journey of discovery and best of luck in the future to you and yours.

    Note from Michael: I would like to think that other families are dedicated to each others’ well being, but at least in the case of providing a life for mentally ill children, the system makes it very hard.

  126. facebook
    Hello Michael. I checked, but did not see a facebook page for Jani (sorry if this was already discussed). Just wondering if that might help get word out there on her condition. I hope you and your family enjoy Thanksgiving and Jani is happy. You are an inspiration.

    Note from Michael: Jani does have a Facebook page: http://www.facebook.com/janifoundation. You can also find the link on the main page and on the “resources” page. However, it isn’t just updates on Jani. The page and the foundation we are setting up exists to publicize the stories of other mentally ill children and their parent(s) or caregivers and their struggle to get help and services. We have channeled our experience with Jani into working to help other families by assisting them with information, etc. Check it out and you will see what I mean. We publicize stories of poor or inadequate or just uncaring care for mentally ill children.

  127. I really appreciate you guys showing the world your story. Mental illness, especially the severe ones like schizophrenia, is still so stigmatized. I appreciate all that you guys do for your daughter. I am married to a man who has dissociative identity disorder, and people ask me all the time how I can handle dealing with someone who disappears at random times and someone else has taken over… answer it simple you love them and you want them to be happy. Anyone who deals with what you guys do know that giving up in never the answer. And there is definitely not enough help out there for people with mental illnesses. I appreciate all that you do!!

    Note from Michael: Jessica, you are exactly right. You love them and keep doing what you can do. We created an online support group. It is generally for parents with mentally ill children but anyone who is a caretaker is welcome. Here is the link:http://health.groups.yahoo.com/group/parental-support/. It is a closed group to protect the privacy of members. Please consider joining.

  128. Your story — wow — amazing! Truly there is a God, and He created you and your wife, the perfect parents for Jani. I admire your courage, your tenacity, your strength! You are truly an inspiration to me to be a better parent. Thank you for your story!

    Not from Michael: Thank you, but we are not perfect. We are always learning and we have human limitations while the schizophrenia does not.

  129. Art therapy
    Hi Michael,
    Has Jani had the chance to try any Art Therapy with an experienced and board certified art therapist with a focus on schizophrenia and children/ adolescents? Loyola Marymount university near you has a fabulous program and can offer referrals if you ask to speak with the head of the program. Art therapy is healing when words fail during typical talk therapy or play therapy. It has been proven to foster an organization of thoughts through art directives specially designed for schizophrenia. Visit the American art therapy association website and google books on art therapy and scizophrenia to learn more as a parent possibly interested in finding out more about possible positive outcomes. It’s important to note that art at the hospital or art drawn during psychiatry session is not specificall “art Therapy” unless the professional seeing Jani is a board certified an registered art therapist. Art therapists in CA are also licenced as marriage and family therapists, so family art therapy is amazing to experience together, it fun, healing, and the family process is honored. There is no reason why you all couldn’t be covered for visits. Art therapy would be something in addition to the psychiatric one sees.
    I was a pediatric art therapist, and now I am a Mom. As a parent, and at this thanksgiving time of year, I want to say that I am thankful that there are parents like you both out there. Your family’s commitment to each other and happiness is inspiring, and thank you. Jani shines on the TLC program I just watched! I’m so happy for you that you have taken all you have learned and are able to help others. You and your wife’s passion for your family’s happiness is one of those things makes people strive to be a better person.
    Take care,
    Karen
    SF bay area

    Note from Michael: Thank you, Karen. I will look into that. And thank you for clarifying that art “occupational therapy” at UCLA is not the same thing as art therapy. I would be interested in learning more about exactly what art therapy is. Feel free to email me at michaeljohnschofield@me.com.

  130. Hello
    Hello,
    I recently saw Jani’s story and was touched beyond words. She is a beautiful girl. Her eyes speak volumes as to how special she is. I was raised by a mother who is afflicted by schizophrenia. Although she did not have childhood onset, she did show symptoms in her early teenage years. As a child I am ashamed to admit I thought only of the bitterness of what life had thrown me. As an adult I have nothing but admiration for her strength and courage. She still battles everyday, but has lived a fairly normal existence. There is hope. I was blessed, yes blessed with a severely autistic son. I, in the back of mind do fear the chance my daughter or sons will develop schizophrenia. My son with autism is especially at risk, but this life path has given way to my reason for living which is working with children with special needs. To me there is no more honorable cause , and no person on this earth is more deserving,amazing or special than they. God bless you and your family. Your children are lucky to have you.

  131. Thank you for sharing your daughter’s special life with the world.
    I work at a children’s mental health agency in Canada,and I am also a teacher.
    I am intrigued that so many of jani’s “imaginary friends” are animals. I do alot of animal therapy–working with animals and many children in many different situations, and I wonder if animals have an effect on jani? Does she respond well to them?

    Thank you again for sharing. You are truly an inspiration.

    Note from Michael: She does. Working with animals is the only time she is completely “present” in our world.

  132. Jani is going to do such amazing things. She has two wonderful parents that support and love her. I know many parents, that would abandon their child in a hospital and expect doctors to just “fix” them. Your bravery and determination inspires me. Jani is going to be around for a long, long time doing BIG things and changing the world. I see a lot in this little girls future. I am not religious, but I am spiritual and I believe that everything happens for one reason or another. The answers are not always clear but believe me, I have seen with my own two eyes how mysterious the world is and how things work out somehow in the end. Your family is beautiful. Keep your heads up and ALWAYS look forward.

    -Cat

  133. Hi there I just watched your show lastnight and then I have spent the day on your website. I have a 9 year ols girl who up until Jan /2010 was able to function in class and needed little adaptations to her daily schedule. Has now gone so far downhill , she has OCD,ADHD,ARND,anxiety disorders. She is daily hurting herself , has fixations and imaginary friends. We have tried many meds and lots have not worked. She was admitted to the psych ward for 7 days and they just added another med for the ADHD and told us that the otyher issues are long term problems and they are a short term fix. She hurts herself and now is hurting other people. She does not have any help at school and has not been able to do any acedemics since Sept. We adopted Chelsea at 10 weeks old , really only being told there was alcohol expossure and little about parents mental issues. I am so frustrated with the systems and some days is harder then others. But I just want to Thanks you for sharing your story with us , it helps to know that there are others out there dealing with the same stuff.

    Note from Michael: I am going to send you an invite to our private online support group for parents of mentally ill children: http://health.groups.yahoo.com/group/parental-support/. The invite will come from my profschofield@att.net email. I am no doctor but I do know from our own experience and those of other parents that ADHD medications can make psychosis much, much worse and have a paradoxical reaction. I would suggest removing her from these meds if you don’t feel they are working. Trust your parental instincts.

  134. I was so moved by Jani’s (and your family’s) struggle with this disease that I broke down and cried last night after the TLC program ended. I cried again, uncontrollably, as I was praying before sleep, asking God to send a miracle to your little girl, to all of you, to heal Jani. I have never been so affected emotionally. You all are wonderful, loving parents and I pray for you all.

    Note from Michael: God has already sent a miracle. God is sending more and more people who care, not just about Jani but about all mentally ill children. God sends me strength to fight for all mentally ill children so they can have a happy life.

  135. I can’t imagine
    I can’t imagine the ordeal that January has had to face, or the struggle that you as her parents go through to try to find stability for her and for yourselves and Bodhi. As a mother of four, I know one of the hardest things in life is to see your child in pain, and my heart goes out to you for bearing an extreme version of this burden everyday. I wish peace and happiness to your little girl.


  136. I was watching her story on TLC last night. And all i could think of was a book call “And I don’t want to live this life” non-fiction book written by Deborah Spungen, the mother of Nancy Spungen. She believed Nancy had childhood on-set schizophrenia as well, and they too struggled constantly to find help in a world of medicine where no one actually had the answers. The book tells a surprisingly similar story, about a brilliant, but sick and frustrated child, and her heart-broken parents desperate, and constant struggle to help her, when no one would help them. I think they felt then, the way any parent would now, alone, and helpless. I know January’s story would have inspired them then, I hope their story will inspire you now. I really recommend it. You are not the only parents to have felt this way, and you are truly not alone. I know one day January’s story will make a big difference for future children who may suffer from the same condition. I wish January and your entire family nothing but the best; And I hope one day January will live in a world where more and more people want to search the solution, instead of brushing off the problem.

  137. Jani
    Please do not give up hope. I have a child that was diagnosed at age 3 with Hyperactivty (she is now 29). Then a couples years later as Sensory Integretion Disfuntion, then mild Autism, then pyscosis and finally as bipolar depression. I finally learned not to put to much on a diagnosis. Symptoms can cross between one diagnosis and another. The issue is finding the treatment that works.

    I understand the struggle. DO NOT GIVE UP. You are your childs voice. I kept hearing “your child can’t do this or that”. Not so. I was told on two occasions – once at age 12 and age 13 to have her institutionalized. We would not. Like you, my husband and I worked out a plan to watch her, have her tutored at home for a bit and supported each other through this crisis. Yes it is a crisis. We were lucky we could do this together for something like this can break up a family.

    The dream of her graduating high school was accomplished. The dream of her getting a job was fullfilled (job training through our county) and the one thing that shocked everyone is that she moved out at age 28 into her own apartment. Yes I am called with questions 10 times a day and she has support from community workers to take her shopping and such BUT she is on her own.

    My one wish that cannot be fulfilled is that of friendship. She craves it so but is unable to achieve it. This is something she is working on….. I will never say never.

    Bottom line is that she is happy. Maybe it is her world. So what-as long as it is a happy world. Bottom line is also that she has correct medication. Diagnosis’s come and go. Some days one problem takes center stage and the next day another. Doesn’t matter. Treat the symptoms not the name.

    Stay strong. With advocates like you she will achieve.
    God Bless You.

    Note from Michael: No, we will never give up. We can’t. How do you give up on your child? It is like losing a limb? Thank you for sharing. It gives me hope. And I agree: you treat the symptoms, not the illness. The name is only useful to try and explain it to others.

  138. amazing
    first off i would like to thank you for sharing ur story. children often go into the system because the parents cannot deal with the problems. u and your wife have fought an amazing fight and as jani grows up she will see that. as a single mom of a child who still does not have a diagnosis of anything that sticks i understand your pain. she would break out in screaming fits that would last for hours…she would bite, scratch, and throw herself into things, and nothing specific would trigger these fits. and like jani she is extremely intelligent. the past two years the fits have decreased but it just makes me wonder what was really wrong with my daughter. ur site has given me information so i can start researching it myself. thank you so much and God bless you and your family.

    Note from Michael: Dani, I would like to invite you to our private online support group for parents with mentally ill/spectrum children. Even if you don’t have a diagnosis, you are still welcome. You would certainly learn a lot and get some support: http://health.groups.yahoo.com/group/parental-support/

  139. Child Psych RN
    I have watched your story on tv and read your blog. I work with mentally ill children from ages 5-14 everyday at a stabilization crisis center in GA. I see behaviors like Jani’s some but never as severe as hers. I think you are wonderful parents who have tremendous courage for what you do for her everyday. It takes strong people and much love to do what you do being that most of the kids I see are in foster care or parents have given up on them. For all your strength and courage, Jani has the best chance of being all she can be. She is blessed to have such wonderful parents. I wish the kids I see daily had someone to love them like you love Jani. i will follow her story and pray for her and your family.

  140. animals
    I am so intrigued by your response that Jani responds so well to animals. This is truly my passion, working with animals and children–I have done alot with at risk youth,and continue to explore children with mental health issues and animal therapy (have been doing programs with children with ASD) , but this is a difficult area to break into becasue there needs to be more evidence that it works. if you have a chance, I would love to know if there is an agency you are working with? I wish I was closer–I would love the chance to bring more joy to Jani with my animals.

    Note from Michael: We work with Carousel Ranch in Agua Dulce, CA. All other animal therapy I have to arrange on my own as I can find. There is no agency specifically that does animal therapy with kids outside of UCLA inpatient psych war. This is what we would like the Jani Foundation to provide. Just need money to buy land.

  141. Smarter Than the Rest
    Your daughter is truly a unique little girl and I commend you for your love and testimony. I can’t help but think of her as the main character from The Golden Compass (His Dark Materials trilogy), Lyra Belacqua. I don’t know if she is able to sit still for any stories, but the character talks to animals and travels into other worlds. I don’t wish to fuel any of her hallucinations, but all in all, Lyra had an unruly upbringing and at the end of it all is the most courageous of anyone and knows that she must live to experience the world. I hope that you find a peaceful balance with your family one day and that Jani keeps smiling. My thoughts are with you!

  142. Dear Schofield family,
    I saw the documentary on Discovery Health earlier this year, and words can’t even begin to express the sincere admiration and respect I have for your undying committment to keeping January alive and happy. I’ve always been interested in psychological disorders (my dad is a clinical psychologist and I am majoring in child therapy) and I found the documentary one of the most insightful in regards to schizophrenia and how it affects an individual who has it and his/her loved ones. I mentioned the documentary to my psychology professor who had not yet seen it, and suggested using January’s story in her future lectures, because January’s story is so unique. I am so thankful that parents such as you and Susan have such a strong will to battle the hardships brought on by child onset schizophrenia, and someday I hope to work with children who are born with such difficulties. I believe helping someone in the early stages of life is just as, if not more important than helping them at a much higher age.
    You are an inspiration to all who have been affected on some level by a psychological disorder (I myself suffer from clinical depression, ADHD, and BPD), and I hope you will continue updating us all on January’s progression as she grows older. I will keep your family in my thoughts and prayers, and will spread awareness about your story.

    God bless,

    Ryan

  143. The Potential Role of Glial Cells in Psychosis
    Dear Mr. Schofield,

    A friend pointed me to your and Jani’s story here, and I actually took the time to read it. I’m glad I did. While there will be no easy solution to your daughter’s affliction, the importance of glial cells and not just neuronal activity may have been largely ignored by the scientific community but is growing in awareness, recently.

    You may find this podcast of value: http://traffic.libsyn.com/brainsciencepodcast/68-BSP-glial_cells.mp3
    The podcast is from this page: http://www.brainsciencepodcast.com/bsp/2010/5/12/exploring-glial-cells-with-r-douglas-fields-bsp-69.html

    The interviewee is R. Douglas Fields, PhD, and he works with the NIH. You might want to read his book to see if the hypotheses he discusses appear backed by the evidence. The book is The Other Brain: From Dementia to Schizophrenia, How New Discoveries about the Brain Are Revolutionizing Medicine and Science.

    Maybe that information will lead you down a fruitful path!

    Best hopes,

    Michael Wright

  144. Keep the faith
    Susan and Michael, I have literally just seen your story on Oprah in the UK and really wanted to write to say you are not alone and many people in the world are so admiring of your strength and love for your family. I cannot imagine how tough the last few years must have been and would give anything to be able to help. I work on a helpline in the UK for suicidal people and often speak with adults with schizophrenia, your story helped bring into focus some of the issues they are facing and I hope will make me even more empathetic when I speak with them. Words are a bit trite in explaining how much you are doing for Jani and I know people saying they admire you offers you no practical help but I just felt moved to send my support. Hope that’s ok. Take care of each other, in a world where many of us moan about the slightest thing you are an example to all of us as to what is important in life.

  145. Happy Holidays!
    Hello Michael and Susan-

    I am a local resident who remembers your story and struggles. I hope that Jani is managing well and Bodhi growing strong. If you ever are in need of a volunterr to come and help out in some capacity, please feel free to contact me. I am in the SCV and work 2 miles from Magic Mountain.
    Best wishes for the holidays,
    Shari 🙂 theaccessibleoutdoors@yahoo.com

  146. Hello from Maryland!
    Oh, dear Mr. and Mrs. Schofield, I cannot imagine what you’re going through. My heart hurts for you all and Jani, and I pray that the medicine will continue to work for your sweetpea. Mental illness of any stripe is no picnic, and causes much pain. I will keep you guys in my prayers.

    I was wondering if you had thought about Johns Hopkins Hospital? I know that it is on the other side of the country, and a long ways to go, but it is a very good hospital when it comes to research and the like, and I think that they would be interested in looking at your case. Plus, Baltimore itself is a busy place, and would provide a stimulated environment for Jani, with places like the Children’s Discovery Museum, and Fort McHenry.

    Best wishes to you all.

  147. Jani Girl
    What a special girl. She reminds me of Katie from Horton Hears A Who. Above all the rest!!
    Be proud forever and ever! You doing more than awesome for yourselves. It must be hard but to me your the absolute best parents I ever heard of!! Stay strong!
    🙂
    xo

    Carrie:):)

  148. Jani is beautiful
    The entire day has flown by because of my vigorous research on Jani. I remember having seen a video segment on her in my psychology class a year ago, and for some unknown reason I decided to read up on her a year later. And throughout all the research I’ve done I can’t seem to find the answer to a question that’s been in my head. And I really don’t want to sound silly asking this question. But has anyone ever asked Jani how to get into Calalini? If there was a way an outsider could have access to this dimension? If she might just be the bridge between dimensions, this idea must have come into your heads. Possibly with access to Calalini, one could understand or destroy the bad friends that she has.
    Chemicals are a product of science. And since science seems to be unsatisfactory with helping right now, why not take a look into something else along the more unexplainable? The illness itself is unexplainable.
    I’m only a 17 year old boy after all. So if I come off sounding offensive or naive blame my youth and lack of experience with life. But this story has touched my heart more than anything, ever. I feel almost a brotherly connection with Jani to the point where I’d offer to help you guys over there. But I am just a stranger, too young for my mind.
    Mark my words, though. If lady luck comes my way and I acquire wealth I promise that a generous percent go towards your foundation.
    Best of wishes,
    Josh Kaplan

    Aquagenous_urticaria@yahoo.com

  149. A touch of Sympathy
    I just wanted to let you know that I have watched the video about Jani and feel somehow connected with her and what you do for her. My mother has been schizoprhenic since my birth and all the time I have been searching for answers /explanations on how this could be. I know now there are no real answers as to why and how to ‘fix’ this. Very sad, but this is one thing everyone dealing with this has to accept. But I would like to reach out with this message and let you know that your story has touched me and that you are admirable for the way you are dealing with this situation.

  150. Tears streamed down my face as I read your story. I couldn’t help but be reminded of my own son as I read of your travails. He just turned nine but was diagnosed with ADHD and Bipolar disorder when he was four. Since then they have dropped the ADHD and he has been diagnosed with High Functioning Autism. We too have a younger son and there are so many parallels…we have experienced the horrors of psychosis, hospitalization, side effects from meds, aggression towards his younger sibling and peers. And yet he started as a model child hitting his developmental marks early too- just like Jani. It is so heartbreaking to watch such a beautiful, sweet child deteriorate. I can feel your pain palpably. But I have to say that we have made great strides and Devon is doing well now. With age and treatment he has improved. His social skills get better every day and he is beginning to get a handle on his emotions and develop a higher frustration threshold. Life has calmed down tremendously both here and at school. When he was four I didn’t think he would ever make it through a day but now it’s a lot different. These five years have been hard but we’ve made a lot of headway. We too went to UCLA- to the outpatient program (ABC) and it was a great turning point for us. I know what Jani has is very complicated- continuous psychosis, disordered thinking, lack of concentration, social isolation, paranoid delusions. The things you describe can be really hard to tackle- particluarly in a small child. We have dealt with some aspects but not all. I can relate but I really feel for you too. Just keep doing what you’re doing and keep the faith. You never know when something with “hit”. As she matures, Jani will become a better partner in her recovery. PS My Mom is a friend of Steve Truitt. Small world, huh?

  151. hello i read your story on oprah and youtube. i feel really connected to janis problems becauce i also lived in a psychotic state as a child. but you accuelly help here you are the most brave and wonderfull people. i have ever read or heard about, i hope you and jani gett all the luck and support you deserve. jani the most!;)

  152. Dear Michael and Susan, Dr. Daniel Amen at the Amen Clinic has helped thousands of people with brain disorders. I am 54 and had a car accident which I developed Post Traumatic Stress disorder, severe depression, hearing and seeing problems and Post Concussion Syndrome. After many doctors, neurologists, psychiatrists, psychologists I was referred to the amen clinic for a brain scan, THANK GOD I WENT! Their scans, the right medications prescribed, the right treatments prescribed…has been a huge difference in my life. I met 50 people in a class and in a waiting room at the clinic who have had dramatic Positive changes due to the scans and prescriptions.
    As a christian I came to see first hand what an imbalance in the brain can do to make a person unstable in their thinking, emotions and behaviors. I also found that spiritual oppression was great that I had never experienced before my head injury. I had suicidal thoughts that I couldn’t fight off because of my head injury. Now with the right medicines my brain is strong. I am strong as a christian once again, but I do have to stay on my brain meds to stay that way. Dr. Daniel Amen who has been on the Oprah show had told us about fish oil calming the brain of schizophrenic children and how it helps in stabilizing their brains.

    I truly believe that what January hears and sees is demonic oppression, demons as numbers. She first needs to be told the bible story about Jesus and salvation. She needs to ask Jesus into her heart as her Lord and Savior. When ever the thoughts or numbers come at her, she needs to tell them in Jesus Christ”s mighty name to go away and they must go away. All of you start calling out the name of Jesus for help and direction…he will direct you to the right people and medicines.

    When January has the right brain scans, the right medications, and has Jesus in her heart, I truly believe she will be stabilized in her brain and be a much healthier and happier little girl. Shamans are dangerous evil spiritual beings that can come out of their bodies…I warn you to stay completely away from them for your daughters sake and for your whole families sake! There is good and evil in this world that we can not see. Please start having January say the name of Jesus every time she is fearful and needs help. God is love and he sent his son Jesus into the world to die for all of us and to help us. We must believe in him and follow him and ours and your lives will be so much better for doing it. Ask January to start talking to Jesus Christ and asking him for help and to know his wonderful love and healing powers.
    I pray that you will call dr. daniel amen in Newport Beach for help and that January gets treated. Much love and prayers, Mrs. Higgins

  153. Parent and Advocate
    Michael and Susan,
    I am connecting with some of your story. My son is now 12 years old and we have been through a lot as a family. Every moment, we think outside of the box. Our son is diagnosed with autism and was diagnosed bipolar at one time, but later ruled out due to his age at the time. Others do not know or truly understand until they have experienced the episodes that would make even a grown man cry. At our home, we have taken many safety measures. Our son is a runner, escape artist, breaks, and throws things. As an infant, he screamed all the time and only slept 3-5 hours. If you moved in the room, he would flinch and wake. We would tip toe around him. He never looked for me in the room or followed my voice. He seemed like he was in another world. By 18 months, screaming and throwing objects were his communication to us. Of course, he was not verbal, so this was very frustrating for him. I knew he was different when I had him and noticed how hyper-sensitive he was right away. I went to many doctors, specialists for years searching for the answers, getting many different differing diagnosises. Every doctor had their opinion and one of my favorites was that I was told to practice on my tone of voice(meaning I was not assertive sounding enough) and say no to him and walk away. Good grief, I have been told some crazy stuff. These people do not get it! I could be loud or soft in my voice and yet sometimes the outcome would be the same. These meltdowns are tiring for my son, my husband and I, but yet some think we can control it. We use a baskethold now through a severe behavior program that my son was in. We have been doing this for little over a year. He is getting older and bigger. I don’t know how much longer we can do this. Yes, he’s on medication and has been for a while. I want and wish my child’s future to be a positive and enriching one. Sometimes this different world can be an awakening to not take one single moment of peace, happiness, and quietness for granted. Simple things others don’t notice, we find joy in. It is my prayer that God will place people in our lives to open doors of possibilities, success, and hope. It’s unfortunate that still people blame the parents for their child’s disability especially if it is behavioral. As a parent we do the best we can with what we’re given. I think you have now seen your not alone in your struggles and challenges. Take one day, one breath, one minute, and look around and say I loved you when I first saw you and with God’s grace we will make it through!

    May God Bless you both,

    Joy Carey

    Note from Michael: Hi, Joy. What you are experiencing is very familiar and you are not alone either. Susan and I set up a private online support group for parents with mentally ill children. Please consider joining. I know the feeling of not knowing what else to do and the whole point is to help each other get through those times. Here is the link: http://health.groups.yahoo.com/group/parental-support/

  154. I watched your story on OWN last night and it touched my heart. God has given Jani the parents that she would need to give her the best in life. It is amazing how HE knows who we belong to. You guys are simply amazing and I will continue to pray for you all.

  155. Really?
    Jani is an amazing young lady! I have watched your story many times and i believe you and your wife should receive a medal for amazing parenting. I think it is amazing the way you modify your lives to make hers livable. She is very lucky to have parents like you!
    As far as the comment that is a few above me…..I have study psychology….in Jani’s case i highly doubt hearing the bible story or learning about jesus is going to help her. This is a medical problem, not a religious issue.

  156. I remember reading a book many years ago about a young woman who was schizophrenic. She developed the disease during her childhood. I believe she eventually became a physician, but her life was a huge struggle and she did not respond to the various medications available at the time. Eventually, the doctors did a procedure which filtered the blood and was a successful treatment. I wish I could be more specific about the name of the book and the dialysis treatment, but I thought I would mention it since it may be something to investigate further as a possibility for Jani.
    Thank you for sharing your story. You are wonderful parents and I wish your family the best.

  157. Parent/Advocate
    Thank you, Michael I will go there. To REALLY?– It certainly is a medical problem, but to get through any of this as many families do, there is a higher power that is in control and without calling on it just to get through the bad days as well as the good we get strength from it. God certainly blesses us with doctors that can help us in so many ways. We must have hope on this journey as it is long and trying at times. We all seek the same outcome.

  158. Michael…I saw your documentary one night recently thinking it was another medical fact finding special of which I am addicted to. After the first 10 minutes, I was in agony…at a loss…deeply moved and saddened by this beautiful little girl and the world that has sucked her in. I cannot get her out of my mind so much so that I have begun to read your blogs in hopes of staying updated on Jani. I felt the indescribable hurt and frustration that you and Susan have to endure, all the while praying for her sweetness and for your sanity. My daughter was diagnosed with Type I diabetes at a very young age and we were told immediately along with this diagnosis that our daughter had instantly lost 20 years from her life. Our hearts shattered as we watched our tiny child playing with a nurse as they prepared her first injection and our hearts crumbled when I had to hold her in my arms tightly as they pierced her perfect skin and injected toxins into her body to help her survive, the first of thousands to come in her life. On that note, I cannot – absolutely cannot find it in myself to even begin to fathom what you and Susan must feel every single day. I have fallen in-love with Jani – she is an amazing little person who beyond her world, is able to educate the two of you and her doctors on what is happening to her, its like she is educating you to protect you and help you prepare for what is coming – her love for her parents is stronger than her illness! I was awestruck with her intelligence and her strength. I noticed on the documentary that even when she was in a psychotic state or in what I now understand to be her world, Calalni, her beautiful personality was still intact. I see her as a super heroine in my world as she battles each day with such infallible courage and determination. I just wanted to praise the two of you and Jani and thank you for sharing your story – thank you for allowing me to experience your life, feel some of your pain and love your little girl…I am so proud of her!! I lift you and your amazing family up in prayer and have shared her story to other mothers. She is unforgettable and I hope to have the honor of watching her grow and flourish in yours and Susan’s love and pray for the day that she and Bhodi can truly be together. God Bless you all!! My love to you sweet Jani!!

    Note from Michael: Oh, you can fathom it. What you describe with your daughter is exactly like what we have experienced: being told her life is shorter than expected, weekly CBC blood tests to monitor the effects of the drugs. It’s very similar.

  159. What a story…
    I’m presently an undergraduate double major in psychology and early childhood development. Jani’s story has been of interest to me for some time now. As a student who wishes to pursue a Ph.D. in clinical psychology I find her story to be terrifying and yet so beautiful. You can’t choose your genetic inheritance, but Jani is one fortunate little girl to have such loving and supportive parents. Even though you both have certainly felt helpless throughout this journey, you’ve certainly made a difference in the progression of Jani’s disorder. It’s the patience and unconditional love that buffers against the numerous other risk factors that could instantly change the course of Jani’s illness. It takes a remarkable amount of strength and perserverance to keep pushing on when you want to just give up and I have immense respect for the obstacles your family has been faced with.

    I’ve always had a particular fascination with childhood psychopathology. It’s heartbreaking to see such an innocent life overcome with such difficulties, especially due to a child’s limited understanding and knowledge of the world. They’re defenseless beings fighting battles that even individuals with a normative course of development are unable to defeat.

    Thank you for sharing your family’s story. Despite all the difficulties you’ve encountered, it’s so inspiring. Jani’s story has struck the spot on my heart that belongs to my field of study. The thought of being able to one day help children with psychopathology, much like Jani is my ultimate dream and her story is the perfect example of why.


  160. All I want to say you and susan are great parents I ever met, u guys show Jani with all your love and care which really makes me touch.
    I have disogranised Schizophrenia;or schizophrenia with negative symptoms which diagonsed last year in march but i was thinking I might have SZ when I was young but my case wasn’t as bad as Jani. I understand how Jani feel when I was at her age, being alone with imaginary friends which bring us joy instead of facing the reality friends or classmate. I don’t have any friends when I was around Jani age, and I was bought up by my aunt separately with my own parents and my family relationship wasn’t good and I don’t grown up in a v.well family. when I was in Jani’s age, my parents often quarrel and I was being child and sexual abuse by my father. And also being bullied in school which makes me more liking to my imaginary friends than the reality. My parents and relatives believe that this is my karma or sin I need to have from god. I used to believe that but a doctor enlighten me and sickness is not a sin/ karma from god as a punishment to us. Is a natural thing than a nurture thing.

    I am not a free thinker, but I do hope Jani condition will stabilize and get well. Hope she can stay as happy as she used to be , hope she can manage to survive instead of trying to kill herself.

    Once again both of u are great, Jani & her little brother are so fortunate to have you two as their parents

    All the best and keep going

    =)

  161. Your daughter is extremely lucky to have such wonderful, outstanding parents in her life. I have watched everything there is to watch on your girl and I have to say you, your wife, your son and jani surprise me everytime. You are two exceptionally special people. I wish you all the best and hope jani is okay.

  162. I have a quick question
    Hi Mr. Schofield,

    My friend and I are doing a project in Psychology about Schizophrenia. We watched your clip on Oprah in class and our teacher was curious on the whole case. I was wondering if you can inform us on how Jani is currently doing. There’s no right or wrong answer, were just trying to gather as much information we can on our project.

    Thank you for your time,
    Victoria and Marie

    Note from Michael: Hello, Victoria and Marie. Sorry for taking so long to reply. Jani is doing better than we could have expected. The schizophrenia is still very much there in terms of her seeing her hallucinations, but she is actually largely functional, as long as we make special accommodations like school for only two hours a day and keep her going in terms of stimulation (there is never “downtime”) and keep her stress level low (which the two apartments help with). But she actually will walk up to other children and talk to them now, ask them their name and age. This is huge. She has come a long way. The medications have given her a lot of her life back.

  163. Hi from Melbourne,
    I have just watched your family on Oprah with tears in my eyes. you are an amazing family . My heart goes out to you all.
    How are you all managing now?

    Note from Michael: Jani is doing better. She has come along way since then. Oprah was recorded back in August of 2009. She still struggles but things are much better. She was only in the hospital five times in 2010 and, fingers crossed, none so far in 2011. She is learning to live with it.

  164. Dear Micheal and Susan,
    Be Proud and hold your heads high your children are so blessed to have you…. What a powerful girl Jani is, the strenght shes been born with has completely overwhelmed me, my heart is now filled with love for your family.
    Please know that you now have love and strength being sent to you all the way from Melbourne Australia.. Thank you for sharing your story with the world and I pray that your words will soon reach the right people who are in a position to support you all as your journey continues. When it comes don’t refuse it for it will be a beautiful gift. I also hope you both get a chance to have some time to just be with each other again, you are truely amazing both of you.
    I shall hold you close to my heart always and may Jani’s life become easier with time.
    Love and white light…xxxx

    Note from Michael: Thank you. Jani is doing much better now (the Oprah episode was recorded in August 2009). We still have two separate apartments but Jani is much more stable now on the medications she is on.

  165. Hi Amzing People.
    I’m also from melbourne and watched your story on Oprah. Reading your blog has been complelling. I can’t imagine the heartache you’ve been through, the hope that a diagnosis could be made and the grim reality that you are alone. I have a son who has behavioural problems (Certainly extremly mild in comparison) but I have done the rounds of child pscychiatrics, psychologists, ADHD specialists etc. I was always blamed as being a bad parent…I wish I was born with your patience as I am a bit short on that….but he is now 11 and still struggling and we have no diagnosis. He occassionaly talks about suicide as he finds life painful. Watching your story has made me feel sad that I have blamed him for his behaviour…When I’ve been frustrated I take it our on him…You have all inspired me. Jani is a beautiful child and I can see that love can conquer most things! Thankyou for sharing your most remarkable journey.

    Note from Michael: Dear Kerryn, we have set up a private online support group for parents with children with mental illness. You can find it at: http://health.groups.yahoo.com/group/parental-support/. Please consider joining for support. We do have other Australian families in the group.

  166. Oprah show
    Hello from Australia.. your story only just aired here on Oprah today.. and it truly touched me. I am currently studying mental health nursing myself and know the science behind Schizophrenia is not fully understood yet..

    I don’t know how open minded you and your family are but being quite open minded myself I have often wondered if the mentally ill could sometimes (and I stress sometimes here) be highly psychic.

    Your story has really touched me and I will continue to keep an eye on your blog and look forward to hearing about Jani in the future. It is people like her that defy odds and make a huge positive difference to this world. xo

    Note from Michael: She very well could be psychic. I don’t dispute that. Our challenge is just trying to keep her alive and give her every opportunity to have a happy life. Right now, things are going pretty well.

  167. Please try this herb ..
    There is a herb from the Indian subcontinent called ashwagandha. It has been used for thousands of years in India as an anti-stress herb and studies have found it beneficial for mental conditions such as schizophrenia and bipolar disorder. There are various companies which produce it. The least expensive option for you would be to buy it from a company called ‘Himalaya’ which sells it in capsule form and which is widely available at many Indian grocery stores. It will not negatively interact with any drugs that she is taking although of course you will want to check that it is okay with her doctor first. My uncle has adult onset schizophrenia – it started showing up in his early twenties 🙁 You have a beautiful daughter. Our daughter also had the same sleeping patterns as Jani as a baby (albeit she would sleep a total of five to six hours but only twenty to thirty minutes at a time) and required constant stimulation by taking her out of the house until at least the age of five. Some kids are just like that but I hope that Jani can be cured of the delusions which so obviously haunt her. Best wishes.

  168. Hello from Brisbane Australia
    Hi Jani Darling, I just want you to know my heart is with you and will always be with you, and i hope we can become friends. My name is Jenny, but i am older than you, a lot older than you, lol. But you can still call me Jenny, i don’t mind. I live in a country far away from where you live, i live in Australia. Jani i think you are a beautiful, happy, loving and caring person, and i can understand why mum and dad love you and cherish you so much. Don’t you ever forget that you are unique, you are and always will be God’s masterpiece. I saw you and your mummy and daddy and your brother Brodhi on my tv the other day. Do you remember Oprah visiting you and talking with you. She is a very nice lady isn’t she. I saw you having fun with your little brother, and i saw you with your favourite animals, and i got to see your friend Rebecca? (sorry michael, i don’t know if i have the name right) It was wonderful to see you have such a good friend, and that you both don’t hit each other. Now that is a true friendship. In australia here we have animals called a Kangaroo and a Koala, have u seen a picture of them before. The koala can be cuddly but the kangaroo can be cuddly only sometimes. They like to eat gum leaves. No not chewing gum leaves silly. I cannot believe how clever you are. You are more clever than my boy, charlie and my girl, sally. They have grown up now tho, Charlie is 20 yrs old now, and working, and Sally is 22 yrs old, she is not working, she has been sick for a few years now. But she is getting better, and her mummy and daddy loves her and her brother charlie very much. It was good to hear that you enjoy going to school, i hope your teacher is your friend as well, and looks after you. Well princess i have to stop talking to you now. May God bless you and keep you and protect you always. I hope i will hear from you soon. Love Jenny

  169. This is just to let you know that Jani’s story is also known in other parts of the world. I read about it on Oprah’s website and really hope that you will always have the strength to carry on. Your dedication is one of the most beautiful things I’ve ever heard of. People like you make life worth living. Thank you so much for sharing, and all the best to Jani and your whole family.

  170. Thank you.
    Thank you for sharing your story with the public. I am sorry that it has been such a dark struggle, and that you will continue to cope with Jani’s illness for the rest of her life. However, your family gives such a powerful testimony of love. At any point, either of you could have walked away and began a new life, but you didn’t because of your passionate love for your daughter, son, and each other.

    I’m a psychology major working on my undergraduate degree right now. I had planned to go into marriage and family therapy, but after hearing Jani’s story, I have changed my plans. I’m now planning to pursue my doctorate in clinical psychology so that I can somehow help children just like Jani. Help is available for every child, and no parent should have to be told by medical staff that nothing can be done or that their child cannot be treated at that facility. Thank you for paving the way, and thank you for inspiring others with your strength and dedication.

    Note from Michael: That is fantastic. There is a severe shortage and need for psychologists with training and experience in child psychosis. Most do not.

  171. I was so moved by your story. Your family is inspirational and I wish you every happiness. Thank you for sharing your journey with the world.

  172. Hey guys! I interviewed you I think last year on KFI AM 640 here in Los Angeles about Jani and your family’s story. I have thought of her often and am so glad to find your site. The interview touched so many people, and they stopped and listened to this incredible, unbelievable tale trying to discern how it would end. I hope Jani and Bodhi are well! I realize the road ahead will be tough but interesting, and your documentation of the experience will serve her and everyone who is touched by this tale in the future. Best of luck to you all, and may peace find you in moments along the way. Kennedy

    Note from Michael: Thanks, Kennedy. So funny you should write because we were just listening to you this morning on 98.7 on the way to Jani’s psychiatrist appointment. Your humor is always a bright spot for us.

  173. Hello,

    I read about Jani’s case a while ago and got reminded of it again while reading a story about long dreams so I decided to check out how Jani is doing nowadays & found this website.

    I just want to say that both of you, Susan & Michael, really inspire & awe me for your perseverance, patience, understanding and love. I read this writing and while you say there may be no one who could help Jani, I think that there have been someone who have always helped her: both of you. I can’t even begin to imagine how hard things must have been like for everyone but you are the only ones who can help Jani. I have faith that you will never give up on your beautiful daughter. I think both of you may be the best parents ever & I’m glad that Jani has such parents.

    This may sound weird coming from a stranger but I would want to see Jani be as happy as she can & live her life into adulthood.

    I don’t prayin the traditional sense of the word but I hope the medical science will keep on improving to find better & affordable medicines for Jani. I’s sure that with the passing of time, new hopes will find their way into your family.

    Love,
    Amelia.

    Note from Michael: Thank you, Amelia. Jani is actually doing pretty well right now. The current combinations of medications has given her life back in ways we would have never dared to hope for.

  174. Hello Mr. and Mrs. Schofield and Jani,
    I’m 16 and I saw your story on the Discovery Health channel a few months ago. I would just like you guys to know that it inspires me that you are getting through this as a loving and supporting family. Jani is such a sweet little girl and I hope she is doing good 🙂

  175. Michael and Suzan, good morning from Athens Greece. I just watch Oprah’s episode about your story and besides feeling sympathy and pain for all that your family has to go through on a normal day basis, mostly I would like to express my respect and admiration for being so open about such a ‘taboo’ subject of an illness that up to today is still a ‘hush-hush’ in Greece. My mother-in-law has been suffering of a form of schizophrenia that makes her think that everyone around her wants to harm her. Unfortunately, I nor my husband had a clue (only my father-in-law and sister-in-law knew of this). On a daily basis, I would be verbally attacked by my mother-in-law via phone calls. This happened out of the blue and of course caused a lot of trouble in my marriage. Since my father-in-law died (6 yrs ago) my sister-in-law had no choise but to tell us. Since then, my husband took my mother-in-law to one of the best psychiatrists in Athens and now with the right medication she is so civil and nice to be around. What I am trying to say is that this illness is nothing to be ashamed of and trying to be ‘hush-hush’ about it may cause enormous problems among other people too. SO, congradulations for your braveness of talking about it without shame. You know, different is not always bad… I truely believe that with the years to come Jani will become stable giving her the oppertunity to live a more normal life… I also am sure that soon enough the right medication will be found and Jani will be able to live in one apartment with her whole family and not be afraid of herself hurting others because all those imaginary enemies will be sent away… Take care and be strong. I am so proud of you guys.
    ~Olga

  176. Michael and Susan,
    My names Brianna and I’m and eighteen year old college student living on Long Island. Your story has completely amazed me. I have never felt so engrossed in something. It began simply studying for my psychology final and doing some extra credit. I stumbled upon a video of Jani and rapidly became more interested. When I found your blog I couldn’t stop reading. I think Jani is such an amazing child with such an amazing story. Her mind is so beautiful and overwhelmingly complex. For some reason, I really can’t explain, I have so much hope for your family. The love and passion that is surrounding the four of you seems unyielding. I wish I could talk to you more about Jani, what a pleasure it would be to meet such an extraordinary child. Don’t let go of the love you have, and good luck.
    -Brianna

  177. It Really ticked me off
    I clicked a link on fb to whach a video on you tube,which led me to more of them,about Jani and your lives.
    the videos were great. soem of the comments were Horrible!!!!!!!! The made me so angry! saying her father had caused this in jani is absolutely wrong and un caring! Not one thought was put into it other than to be grossly mean! I want this person to live..one day in the shoes of a parent with a mentally ill child. My son,Isaiah has so many different mental disorders even the psychologist has to take time to think of how to treat him! He has done everything exactly how Jani’s parents describe Jani doing, rarely sleeping,he has Screaming non stop unless stimulated,outside,in movie theaters, parks,grocery stores. constant movement and change. my son is 8 his violence began at 2!!!! he grabed a butcher knife out of the dish washer an dchased his oldest brother with it saying Kill,Die… he was in a rage! we got barely any help from doctors,specialist,He was seeing things we didnt befor he could crawl, engaging these ghosts (he calls them) in babbling and following them with his eyes. My son is my life.
    people dont get it! they want to place blame…. I know exaclty what Janis parents go through,I know the looks of exhaustion on their faces..I am right there with them in knowing that only by making a big noise will things get better for our child/ren….
    if I sit here and quietly accept the sorry lack of services out there for my child what good will come.. NONE!!!!!!!!! will I write our story??? Damn straight I will. will I talk on any radio or tv show who asks, You Bet! why? because it has to be done! not just for My child, but for Jani and all the other children in the world , living with mental illness,for all the parents of these children struggling to do their best to see their child happy and healthy!
    and because ONE voice is seldom heard in the storm, but thousands will be……….

  178. I beleive Jani has a good future ahead of her. She may not be able to ever live independently, but Im sure her brother will make sure she is taken care of after you and Susan are gone. From her Discovery Health special she seems to have some sort of understanding about what kind of state shes in. I was astounded when she said that she diddnt want to go to the hospital but she felt like she needed to. I hope Jani can tell her story someday, from her point of view.

  179. Hi
    Hi, my name is Erin. I’m 24. I have never been diagnosed with schizophrenia, but I have been fighting other mental illnesses since about first grade. I too spoke in full sentences at about a year and a half old (to anyone who would listen), have almost autistic-seeming issues with sensory input but without corresponding autism, insisted on being called anything but “Erin” for most of my life (it used to change almost daily; these days I’m better at keeping a consistent concept of my identity for a few months at a time at least– sometimes a year or so), and had compulsions as a young child to do certain things (like keep my back to the wall at all times) to prevent “terrible things” from happening. I was deathly afraid of heights and ledges because I was constantly compelled to leap from them. When I was seven I told my mother I thought Billy Joel’s “River of Dreams” was written for me, because surely something like what had happened in the song, losing some important mystical part of myself along the way, was what had made me the way I was. I tried to drown myself at 11 years old, and when it didn’t work, ran into walls to try to render myself unconscious just to get away from my head. I recognised the dark circles under little Jani’s eyes right away. Fortunately for me, I didn’t have persistent hallucinations– I was more of a delusion/compulsion kind of girl, I guess– and was able to sit still and deal with the academic rigors of school even when the social ones were too much for me, but my family was not nearly as supportive as you appear to be and much of my youth was spent alone at night wandering the house and crying because I knew “I’d always be that way” while the rest of my family slept peacefully. I know it may sound strange, as I’m sure most of the comments you get here lean more towards expressing sympathy and identify with the difficulties you face and express wonderment at January’s situation, but I really, truly feel like I identify with your daughter. (I had my own “world” too from 8 to about 13. It was called Looti and I would write stories about it, draw pictures of it, drag my reluctant friends into its mythos, anything– it was far preferable to live in that world than this one. I still have similar cadres of “characters” who populate storylines in my head which run and change constantly, even when I’m doing something else.)

    If there’s one thing I can say would have helped me, it’s this- please don’t take her world away from her cold-turkey. Let her draw you into it. Of course she needs the medication, of course she does need to relate to reality, but ask her about the things she sees and hears. Let her relate her world to you in intricate detail, and try to understand. Communication is the first most important step; once she can and knows she must communicate these things for other people to perceive them, they may seem less all-encompassing to her, not to mention you’ll have a better idea of what she’s going through. Accept as completely real her irrational fears, and promise her you will protect her from them. If you dismiss them immediately as unreal, as a problem, and it’s all she knows, all that will lead her to believe is that you either a. can’t see reality, because to her that *is* reality, or b. can’t be trusted, because you’re denying something that’s clearly right in front of her and may appear as a threat. She may believe *you* need protection because she can see these things, and you can’t. Loss of control is scary. She may keep things from you to protect you. I know I did; I was perpetually terrified of everything and to this day, my mother says she had no idea how bad things really were, because I never once spoke of it, just retreated into my head. (Please don’t think I’m acting like I understand your situation completely, I know it’s impossible just from reading a few entries online, I’m not criticising anyone’s approach– I’m just telling you what I think would have helped me, and the things that helped me communicate better with the adult-onset schizophrenia sufferer I used to live with. Obviously it’s not right in every situation and I claim no medical credentials.)

    I have a full-time job now; I have friends, a boyfriend, a good doctor and medication that really helps, and I’m doing ok. I’m still very clearly different from everyone around me. I probably always will be. January will too, but I think she’ll own it someday. She’s a beautiful girl, inside and out. It’s my greatest goal in life to some day be able to help a troubled child like her and like me; please, please let me know if there’s anything I can possibly offer.

    Note from Michael: Sorry it has taken me so long to reply but I wanted to give a serious reply and didn’t have the energy. Yes, you and Jani have a lot of similarities, which gives me hope. You have made it. I am sure every day is still a titanic struggle but you are still here and you are carving out a life for yourself in this world, even if Looti is still there and still pulls at you. I struggle with Jani’s world because it is all she talks about and it is frustrating to keep answering questions about a world I can’t see and people I can’t see. But I am afraid to cut her off, to completely refuse to play along, for fear that she would stop trusting me, stop letting me in. She asks me constantly to answer questions about her hallucinations “What does 24 Hours want for dinner?” as if she needs to know that there is someone in this world that will at least try to reach her. So I do, as exhausting as it is. I play along because my biggest fear is not being let in at all.

  180. My heart goes out to you and your family. I saw the discovery special as well, and I was completely heart-broken. I could never imagine how I would feel if my own child were suffering from the same condition. I hope and pray that in her life-time a drug will be developed, or some type of treatment that would cure her. I admire you and your wife’s strength. I know January was put on this earth for a reason, and you were chosen to guide her on that journey.

    Will you be making another TV special about January? I would love to see how she is progressing, and if she is doing any better. Children like January are the reason why I am choosing to go into the medical feild.

    God Bless her and your family.

    Note from Michael: I too believe she is here for a purpose, and my purpose in life has become to fulfill her purpose. As for another TV special, you never know. Discovery/TLC/OWN/Discovery Fit & Health has not yet approached us about doing another special. The production company that shot “Born Schizophrenic” was great and we are still in touch with them. We would be open to another special but it would take a network making a commitment to do another special. There is some interest but nobody has “greenlit” anything as they say.

  181. I am absolutely amazed by Jani and your family. How you live day to day just to make sure she is comfortable and is happy. Its amazing how we would do anything for our children so that they don’t feel the stresses or unhappiness of this world. My hats off to you and your wife and especially beautiful little Jani.
    My husband and I opened up a boarding house for adults back in 2009 and clients were referred to us by a behavioral health center. For the first two months we had clients who would stay for a month or a day or would rearrange the whole house and all of them had mental illnesses that they had been battling all their lives. These people had no support from their families, their medication was always off or they would take too much and eventually would be admitted again. One day in October of 2009 we get a call from a case worker and said she had a guy by the name of Dan and if he could stay with us and see how he would do in our home. We never turned anyone away, so they brought him over and the 1st thing he said was Hi I’m Dan and I’m a paranoid Schizophrenic. At 1st I was taken back because most clients wouldn’t say two words. He proceeded to tell us he hears voices and talks to them to please not be alarmed. He was one of the best clients we had the whole time we had our boarding home. Pleasant, helpful, very clean and so so nice. He would even make sure the other clients didn’t go without. We fell in love with Dan. Well once Dan moved out about a year after he moved in we decided to close the boarding home because of many changes to the program. Dan has been battling this since the age of 16, he is now in his mid 40’s. When Dan moved out he moved into his own apartment and prior to that he found a job at a little bistro waiting on tables. My husband and I felt like he was our child moving out on his own, we were so proud of him and he is still doing great a year later. His case manager said he had never lived more then a few months at any of the boarding homes, he always moved around. He lived with us for exactly a year. We made sure that he and the other clients were at home and we would help them in any way we could. When I watched Jani’s story, I thought of Dan and really understood what he has been through all his life and my heart grew even softer for him. Thank you for sharing this story of your magnificent child. You are truly blessed to have such an extraordinary little girl.

    Note: I am really happy for Dan. It’s funny but Jani does the same thing. She will walk up to people, start talking, and then announce out of the blue that she has schizophrenia like she is commenting on the whether. No shame or anything. I think that is so cool. Nobody should be ashamed of mental illness.

  182. Principal, CEC South, Williamsburh, OH
    Mr. and Mrs. Schofield,
    I have now viewed your family’s special on DHF channel for probably the tenth time. Each time I watch it I’m in awe at your dedication to providing the most healthy existence for your daughter. For the past 6 years I have been the principal in a separate facility for students with mental health and behavioral needs. So many of the clips from your television special are ones that did not shock or phase me at all as I, along with my amazing staff, work through the same situations with our students everyday. I was so thankful to hear your comments, Mr. Schofield, about how you really felt the school providing the services they could to meet your daughter’s needs at the time of filming were doing the best they could. I, also, commiserate with you at the many dead ends we run into with social services, hospitals, etc. I just want to give you my spiritual support and join you in making society aware of the very real needs of these young people struggling with very real illnesses. Those young people with significant mental health needs (other than autism) are consistently viewed as “behavior problems,” or “non compliant,” or “disciplinary cases,” when, as you know suffer with uncontrollable actions and statements that affect self esteem and self worth. They travel every day down a frightening and unpredictable road. I suppose in all my babble here that I simply want you to know that although I’ve only seen a mere glimpse of your lives; I am blessed and honored that you allowed me into your world. With your raw dedication to the best existence for both of your kiddos, there can be nothing but success in store for you all. Thank you for taking time to read my post… thank you so much more for sharing your story. Sincerely, Liz

    Note from Michael: Thank you, Liz, for your understanding and empathy for the children you work with. They need people like you who understand that they are not “bad” kids.

  183. From another parent
    I saw the episode on Discovery last night and cried with you. My daughter had mental illness and was a challenge from the day she was born. It was so hard to have any kind of life while tending to her needs, and we got her the best help our insurance would provide. We are still paying off credit card debt we ran up in order to help her. My Stephanie died 2 years ago (4/3/09). Her last birthday was on the day of one of Jani’s psychotic breaks (1/12/09). Stephanie died of an accidental overdose due to medication interaction. That was the worst day of my life. Our whole family revolved around caring for Stephanie and bailing Stephanie out when she would eventually get into trouble. But we loved her more than anything.

    She was diagnosed with bipolar disorder with psychotic features (because of her hallucinations), but the first psychiatrist she saw during her first inpatient episode said “schizophrenia.” I kind of wish that diagnosis had stuck, because in retrospect, I think that was the right one. Seeing your story last night made me realize that we did absolutely everything in our power to help our daughter. There was really nothing more we could have tried.

    I applaud you and Susan for what you’re able to do and that you are still a couple, focused on your children. That is incredibly hard, as my ex-husband and I know. We were together for 27 years. Our marriage ended 6 weeks after our daughter died.

    I wish you a long, happy life with Jani, filled with successes. If anyone can make it happen, it’s the two of you.

    Peace – D

    Note from Michael: I am so, so, so, sorry for your loss, D. I know it is no consolation and never can be but my life is dedicated to making sure Stephanie and others like her who have left this earth do not die in vain. I will change the system, no matter what it takes. And I will remember your daughter. Always.

  184. WOW! I never knew that this could be that bad. January, if you ever get a chance to read this, I hope you will live to adulthood and I hope that you can use your intelligence to add on to all the other intelligence in the world. I think you are one of the most intelligent people in the world and I hope that you will go far. January’s parents, I hope that you will hang in there. If you are there for her, she will be so happy that you were there for her. You guys are so inspiring and I will never ever forget you or January!

  185. It’s stories like this that reassure me that clinical psychology is the correct field for me. My best friend became schizophrenic at age 16, and has a poor outlook due to her high IQ and onset at age 16. There are so few medications available for it, dealing with insurance has been every sort of horrible for her family, and there’s nothing I could ever do for her except listen to her when she said that she and Charles (one of the men living in her head) went to Havana, Cuba the night before (this is a recurring fantasy in her head).

    It’s seemingly impossible cases like this that make me want to go into clinical psychology. Your daughter is, as strange as it sounds, an inspiration to me.

    Note from Michael: Well, we definitely need more psychologists who have experience with schizophrenia. There are surprisingly few. I think psychology has gotten too far away from the field that gave birth to it… medicine. I would like to see them reunify, given our new understanding of the role of biology in psychological development. By the way, regarding your friend, having a high IQ is generally a positive. Yes, those with a higher IQ have increased risk of suicide but they also have more potential to gain some sort of control and be functional. Overall, schizophrenics with high IQs have a longer life expectancy than those who don’t.

  186. Strength
    I saw your story a few nights ago on Discovery Health. My heart went out to poor Jani but she has some of the most amazing parents I have ever come across. I pray that you will continue to find the strength and support that you need to get your family through this.

  187. Michael,

    Thanks for being willing to tell your story. Mental illness is a thing that no one wants to talk about in public. As a result of the silence, so many people who have had to deal with it in their families know it’s absolutely real, and have to live with the results of it, feeling alone, shocked, afraid and isolated. (Never forget you are not alone!) As another result of the silence, many people don’t really understand what mental illness IS. (There is a lot of that in here–ie. take vitamins, find the allergy, etc.)

    Mental illness is a real as granite. If someone you know has bipolar or schizophrenia, they don’t “snap out of it” or discover some magical combination of grocery store ingredients to “fix” it. It’s part of who they are, and sometimes it seems like it’s all they are, but not always. Not always. You can love someone like this ferociously–it’s easy and it’s hard and you’ll never forget it. People with these illnesses can be almost haunting in their beauty. You can also fear them more than anyone else and not be able to explain it to anyone because people don’t understand mental illness. Knowing someone like this changes your life, as you know. I don’t know the meaning of this illness, but all things can have good outcomes if you look, even this. Keep looking. Be realistic but keep looking. [I’ve experienced this in someone I knew well & loved much and you can probably tell.]

    PS. I’m Catholic. There is such a thing as demonic activity, and it has various levels. It’s as real as mental illness and it’s also something that people don’t talk about and don’t understand. It can be distinguished from mental illness because it has specific properties which are different from mental illness. IT’s not the stuff of sensational amateur dabbling. It takes a team of psychiatrists and exorcists to diagnose demonic activity. The Vatican is currently training exorcists because this is also needed for some people.

    However, it sounds like you have your differential diagnosis of childhood onset schizophrenia, particularly since there are periods where, as you say, things go pretty well for a month or more at a time, and the other topic has not seriously come up except in the “wild” world web. 😉

    Michael, I wish you the best of luck and hope Jani gets the help she needs as she develops. She is beautiful. Hang in there. A lot of dealing with this, as you know, is being calm and putting one foot ahead of the other. Keep loving. It’s the most important thing there is in this life.

  188. your little girl
    Jani is so lovely! I believe that she is very fortunate to have such devoted parents. You know, Jani WAS meant to be here, as Michael stated on 20/20, but if that is true then so must be the fact that the two of you are her parents. Ever since watching the documentary on tv I have tried to keep up with Jani’s progress via the internet. Thank you for sharing her life with me. I have to wonder if Jani is just one of those special people who use parts of the brain that even Einstein could not fathom. Maybe cats, dogs and numbers follow us ALL around; we just are not tuned into them like Jani and others are. I am not a religious person but I am a spiritual one and your little girl will find her place in this world and when she does something GREAT I will not be shocked. Write to Dr. Temple Grandin {Autistic adult who taught herself to live within a non autistic world} I know Jani is not autistic but Dr. Grandin might be able to help Jani find a way to fit in a bit better socially. I wish your family good luck and I truly hope that the struggles of daily life do not interuppt the obvious love the two of you have for one another. Cathy from Geneseo, NY.

  189. my prayers are with you and your family
    i have shared this with all of my family so that they can read it.yes i do hope on day day that she can tell her own story to the world.but i think that she is very pretty little girl and on day she will understand all of still.and i hope that her brother understands as well.thank you and god bless you all.

  190. You are amazing.
    You and Susan are two of the most incredible, wonderful, loving parents I have ever encountered. The lengths to which you have gone for Jani demonstrate that. I don’t know if I would be able to muster that kind of strength, but then, I am not planning to parent for many years, if ever. To stick by your child when all hope seems lost takes a tremendous fortitude; less severe illnesses drive families apart all the time, and here you are, determined to help your daughter.

    My love to you and yours.

    Note from Michael: Well, thank you, but it really doesn’t feel that hard. This is my daughter. She needs me.

  191. Michael,
    My daughter was born in November 2003. The nurse came in the room and asked, “Is that baby watching me?”
    I knew then something was different about her. At 2 years old, I suspected she was reading. By 3 years old she could read everything. Her IQ is in the 140s. Lately we’ve been going thru diffecult times and have an appointment to see a child psychiatrist next week. Eventhough our daughter has been seeing a psychologist who specializes in gifted children. The odd thing is, I am schizophrenic myself. I was featured on the Oprah show years ago. But at that time I was on Medication. After years in and out of hospitals, I fianally figured out how to control my brain. I am now med free. Of course I worry about my daughter, especially after watching the program about your daughter. There are strange similarities. I feel if my daughter does get schizophrenia, I will just teach her how to get well. Did anyone in you or your wifes family have schizophrenia? My grandfather did. Anyway, I have many thoughts and insite into this illness. I’ld love to brainstorm with you. I do know that it is very exhausting raising these types of kids. I hardly have time to write this comment. I just felt I needed to make time to reach out. I fought my way out of mental illness alone, I feel I need to do whatever I can to help others!

    Note from Michael: Yes, there is schizophrenia in our families. We would welcome your insights, as I am sure would other parents. Feel free to come over to http://www.facebook.com/janifoundation which is our public discussion forum.

  192. I saw your story on TV tonight, I really have been moved. Your life must be so hard, you are very strong to struggle. There is nothing I can do but I wanted you to know that I am with you and that I hope things will evolve because you deserve it for being best parents ever.
    Keep holding on.

    Paola from Marseille, France.

  193. It wasn’t brimstone, it was hormones
    I have no words to express how deeply moved I am to learn about your family. Please may I just add something from my own experience? This is for those who are stuck on the demon explanation. When my first son was born in 1977, I developed crippling Post Natal Depression. Being part of a Pentecostal church at the time, I was told repeatedly that my problem was not medical, but sin, secret sin, the devil, demons, you name it. I became very isolated, more through shame than through my illness. I did NOT need to repent, or the laying on of hands, or deliverence. I needed someone with sense to get me to a doctor. You can just imagine how horrible this time was for my baby… to this day I cannot allow myself to dwell in those memories. After 18 months of total hell, when suicide seemed my only option, I begged my desperate,but equally clueless husband not to leave me alone with my son. He found a doctor and I finally received the medicine I needed. It was easily another year before I recovered enough to begin functioning again.
    My point in this basically unrelated story is that I see my wonderful son today, with personal “issues” and struggles, I’m sure he has been deeply affected by my state during those first 3 years of his life. How I wish we could have “seen the light” much sooner and treatd my depression for what it was – an illness – not a spiritual crisis.

    Jani, how I wish I could know you – beautiful, mysterious child. You are all in my heart.

    Note from Michael: I am glad you are doing better. What I always say to those types of people is that “You call it demons, I call it ‘mental illness.’ It’s the same effect. And if God didn’t want medication, He would not have put it the minds of those who created it. God works through people. If people actually read their Bible, they would see that all miracles were carried out by God WORKING THROUGH HUMANS. Medicine is one of God’s miracles and it is hubris to claim it isn’t.

  194. You are really both amazing parents. I don’t know how you do it. I think you’re really a role model for so many parents, regardless of whether their child has a mental illness, or other challenge.

  195. I watched Jani’s story again today. My son was born 1984. He cried for 8 months. He was put on medication at 4 years old. He was in Camarillo State Hospital from 1991 to 1996. The only reason he was allowd to come home was because they were closing the facility. He never got help. Because, as you said, they were trying to change behavior. He was strapped down with restraints, given injections. Today, he is a danger to his person and anyone around him. Though I have contact with him via the phone, I am unable to have a relationship with him, due to my life being in danger. He does not know where I live. Because when he is in a “blackout”, my life is in danger. I would love to know how your daughter is today. I would love to believe that something will change for her as she grows up. Thank you for giving us a place to learn.

    Note from Michael: I am so sorry. If you would be willing to share your story, please come to http://www.facebook.com/janifoundation.

  196. I am sitting here with tears streaming down my cheeks. My 6 year old son is like Jani. He screams for hours each and every day. Rages that can last for over an hour at a time. He is filled with so much agitation that scratching his face, banging his head or throwing himself against things seems to be the only way to try to relieve it. He tells us how much he loves us one minute, then a switch is flipped and he will kick us in the face, bite – fight us like he’s fighting for his life. No one seems to know what is wrong with him. Questions of Bipolar, Schizoaffective disorders. Tried all the atypical anti-psychotics, mood stabalizers. To no avail. PLEASE share any info about Doctors you have with me. Someone that will listen to me, or better yet, my son.

  197. Dear Michael – I have now watched Jani’s story for the second time. Your child is very beautiful and very special. I believe she has something great to offer this world. We just have to wait and see what it is? But I doubt we have heard the last of Jani.

  198. Wow, I’ve seen your description of what you are both going through since it was shown on “Oprah.” How is Jani doing now? I know that many others have stated that they pray for you etc. My question is do YOU pray. I am so not a “holyroller” and do not advocate for evangelical TV users in any way. I am not even the littlest bit right wing. I do however, feel it to be important to have a relationship with God. Really it’s so much more casual than the weirdo’s espouse. I pray in the shower,while driving, walking through the grocery store. I pray for anyone who strikes me as needing a prayer including myself. What strikes me regarding what you are going through is that I’m not sure you have tried getting help from above. Think about it. Belief and prayer hold much power, especially when done with the help of many others praying at the same time. I’m not even Catholic but if my child had such a problem that seemed unsolvable, I’d seek the help of a trusted Priest. In Chicago is a priest whom has shown himself to be worthy and kind. I believe his last name is Kauffman or something like it.
    You are both strong, capable adults and I can’t imagine your heartache or stress level. I admire your hard work in helping your child. God Bless.

  199. Micheal,
    Can you pass this note to Jani! Thanks!

    Hi Jani! My name is Julie, I think you are great! You also have great parents! I hear you like animals. I have two dogs, and five fish. Do you like dogs or fish? I hope you had a great day today!

    Take care sweet girl! Julie

  200. Thank you
    I just wanted to thank you for what you’re doing. I’ve been blessed with three beautiful healthy little girls, and cannot even begin to pretend to understand what you’re going through, but your story touches my heart every time I check in on your family. You and Susan are the most incredible parents and the life you’re giving BOTH your children, despite your constant challenges, is inspiring to me. As a single mom, I have days where I want to throw myself a pity-party because I’m outnumbered 3:1, but then I remember the challenges that so many others face and I have no choice but to take a moment and remember the sacrifices you and others like you make every day. Jani couldn’t have been given more perfect parents and even if she never understands how truly blessed she is to have you two, know that you have a large extended family of people who hold you in very high regard for your commitment to your children’s lives. Rock on, Michael!

  201. Jani’s story is so touching :'( I believe in you Jani! You’re going to make it through. You two are wonderful parents, trying everything in your power for January and Bodhi. If I were Jani, I would be proud to have such kind, caring, wonderful parents. 🙂

  202. Hi Michael,

    I am a senior at the University of Maryland studying Communication and Public Relations. After growing up watching Discovery Health like it was my job, I knew I wanted to use my skills in PR and Communication to benefit any health-related organization or cause. After reading Jani’s story, and yours and Susan’s obstacles and triumphs, I just want to say that you reassure me I am doing something I love. Stories like yours pull at my heart strings and if I can use my degree to help families like yours or promote general information about what your family deals with to make sure you don’t feel as alone, I will have done my part. My dream is to ultimately help families with similar situations by giving them the tools necessary to share their obstacles with the public and hopefully find relief, whether physcial or emotional. I think you and Susan are tremendous parents, and though I’m not even thinking about marriage and children yet, I truly hope that I am able to be half of the parents you are when the time comes. Jani is incredibly lucky to have such a strong support system – and I have no doubt that she is living the best life she can because of what you and Susan do for her.

  203. Jani
    Ii saw the show about Jani on tv almost a year ago and I couldnt turn the channel.. it;s so weird how a kid so young could have something like this. I saw through the tv show how hard she was to handle before she had medication and I gotta say you and your wife are really strong to have kept going with it. ii hope Jani gets better in the future and maybe a cure for schizophrenia will be found 🙂

  204. I first saw Jani’s story on Oprah and Jani captured a piece of my heart. I am in awe of the wonderful parents and human beings that you are. You should are inspiration to every living soul! Never give up. Always keep each other to lean on, no matter how heavy!

  205. Jani is in my prayers. My 6 year old daughter has had some major things going on but the symptoms seem to come on progressively. She seems for the most part to handle school although she is behind and keeps mostly to herself, but outside of school she has rages where she wants to kill me or hurt herself or others,kicks,bites throws things at me,and it can be heartbreaking and exhausting when it happens, hears voices and has hallucinations which at times tell her to do bad things. She had been diagnosed with bipolar disorder and adhd then added psychotic features and now they are saying early childhood onset schizophrenia it just seems that when I think we get one thing somewhat halfway under control something else crops up reading this gives me some hope.

    Note from Michael: Hi Kristine. We have a private support online support group for parents of mentally ill kids. You are welcome to join. We have two hundred other families going through the exact same thing as you. Here is the link: http://health.groups.yahoo.com/group/parental-support/

  206. Hi I saw your story on tv, it sounds so sad, u need strength. I believe you should try to contact a pastor in a church and be heavy in fasting and prayer for you and your family, you have suffered and you need strength. You sound defeated and hopeless and that is so sad, I believe in power and prayer but I also know there are serious mental disorders as well, but the devil is real and demons are real, it almost sounds like to me if medications can not work than nothing of this world can help, than only a God in heaven can help, bc its very demonic even if you read the bible yourself there are many stories about demon possessions. One story in particular talks about a man no one could bound they tried to chain him they called him a maniac and he wasnt wearing clothing and they found in him in graveyard yelling and cutting himself but he sw Jesus and he got help. I know we cant see Jesus but THERES Is hope for you the bible says With God nothing is impossible NOTHING. ANd the Bible says God CANNNOT lie!!THere is hope Jani will get better. I believe in prayer I believe you and your family can get the help you desperately need and long for and deserve there is hope in Jesus Christ for your daughter Jani. My advice continue to do your treatments but change your mindset refuse to believe there is no hope bc I tell you there is hope in Jesus name. Pray Fast and call local churches call every church. It sounds like you need encouragement and hope dont give up refuse to accept these circumstances and start having hope so u can be strong to pray for your daughter spend all day everyday weeks months in constant prayer refuse to give up. Ask God tell help with her condition bc it sounds like demon possession Im going to write her name done and IM going to start praying for u and Jani and Bohdi but especially parents. God bless

  207. Wow. Jani’s story is so amazing, and I strongly believe that she will be able to have a very good, full life, and the life that she has lived so far has been the best that it can be. Your family is so inspiring, you give me and my family so much hope. I hope Bodhi is well. I’m in the CBG (Center Based Gifted) program at my school, where you have to be in the 98th percentile to get in. There is a girl (Let’s call her “R”) who is schizophrenic and also has an astonishingly high IQ. R is in some of my classes, but is quickly pulled out (which I think is effective, but not ethical, as she never has time to calm down etc.) of the class room if the disorder “gets in her way” She sounds a little bit like Jani.
    I hope everyone is well in your family, and that you can have peace and happiness for your whole lives long.

  208. Thank you for posting your story. I have a young son with schizophrenia, and for so long it seemed as if we were the only family with these issues. I recall protecting my youngest son from my oldest son and looking for help that appeared to never be there. The resources are not viable for us either, and I have also come to a point where I don’t think he will finish school, go to college, or have an independant life, but I just strive to have him in my life. I remember lauging like a mad woman once when the school had sent home a letter asking us to talk to our son about good behaviors and appropriate stories, and suggested a little discipline goes a long way!! HAHAHA. Sorry, we still laugh as if we had never considered that one before. My son was diagnosed at 9 years old after years of medications, hospitals, therapists, and so on. I just wanted you two to know there are other families out there who live the same life every day whose priorites have shifted from popular kids in schools, excelling academically, and other “normal” childhood goals to protecting our families and just being as happy as we can be every day. Thanks again for sharing!

    Note from Michael: Thank you.

    Second note from Michael: Jennifer, we have a support group for parents with children with mental illness you are welcome to join. It is private and you have to request to join. The link is : http://health.groups.yahoo.com/group/parental-support/

  209. I just saw your story, and read your story. Thank you for sharing. I will join your support group! My story began with adopting my son at 2 months of age. He also did the staring and would smile and “talk” to things I did not see. His violence started at about 7-8 months with biting and hitting. I had bruised and bite marks all over me. When older he started hitting me with objects, once hitting me in the head with a toy while driving. He often tried to jump out of a moving car, he ould unstrap himself in seconds from any seatbelt. At present he is 14. I am looking for an out patient setting for him as he will not attend school, when forced he shut down and was non-functional and put on home hospital. He is up all night, and sleeps all morning. He was feeling suicidal one night and I stayed up with him all night, talking about how life is worth living. He also has an over 140 IQ. He was tested last year in school, he has an IEP in place, but not much help when he will not attend school. I am a single mom, with dad long gone, could not cope. Now my son is a head taller than me and strong, I am not sure how to handle things sometimes. My goals for him are to keep him alive and as happy as he can be. He also will eat very few things and I have been strongly critisized for allowing that, but he is very thin and he simply will not eat if his foods are not available to him.

    Thank you for sharing, I have been feeling so alone and stuck!

    Note from Michael: Suzie, email me at michaeljohnschofield@me.com. Depending on what state you are in, if your son cannot attend school, the district has to send a teacher and aide into your home. He is entitled to an education under IDEA (Individuals with Disabilities Education Act) and if he cannot attend school then the school has to provide what is called home/hospital care.

  210. Hi, Our life has been difficult since our adult son was diagnosed 4 years ago with paranoid schizophrenia. I cannot imagine what you have been thru. Our country and society doesn’t have good mental health care & good psychiatrist & psychiatric hospitals are very hard to find. No one knows the toll it takes on families. It would be easier to let your child “go” or if they died. No one knows what it is like to think or say that unless they have a child with a mental illness. I admire your strength!

    Note from Michael: Tammy, how old is your son? You can email me at michaeljohnschofield@me.com. We also have a private online support group for parents of mentally ill kids with a lot of families going through what we are all going through. Here is the link to request membership: http://health.groups.yahoo.com/group/parental-support/

  211. Your Child
    This kid has dark circles under her eyes and looks so strange. She should be destroyed because she will get older and bigger and probably kill someone. She will be a burden on society forever.

  212. I’m not sure what your religious beliefs are and I don’t know if you ever tried Christian God – “Jesus”, but there’s claims in the Bible that He can heal the sick and / or demon possessed if you only “believe” He can do it. Maybe you’re skeptical and I understand how people like you think because I used to be like that too. It’s weird when you think about all the “Why did God do this or that (to me or the world if he loves us).. etc. etc..”. God works in mysterious ways.

    So for you to have a child like Jani is really a blessing in disguise. I know your life must be very difficult now as a result of her mental instability but God has a way of blessing those who remain faithful through their tumultuous storms. Yours is just longer than others but God will repay you with joy because God is just.

    Philippians 4:19 “…and my God will supply every need of yours according to his riches in glory in Christ Jesus.”

    2 Corinthians 12:9 “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”

    Psalm 34 17-20 “When the righteous cry for help, the Lord hears and delivers them out of all their troubles. The Lord is near to the brokenhearted and saves the crushed in spirit. Many are the afflictions of the righteous, but the Lord delivers him out of them all. He keeps all his bones; not one of them is broken.”

    Psalm 121 “I lift up my eyes to the hills where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip—he who watches over you will not slumber; indeed he who watches over Israel will neither slumber or sleep. The Lord watches over you—the Lord is the shade at your right hand; the sun will not harm you by day nor the moon by night. The Lord will keep you from all harm—he will watch over your life; the Lord will watch over your coming and going both now and forevermore.”

    So my friend, you are truly living in a storm but don’t worry, it will break soon. It might break sooner than later if you call on Jesus for help.

  213. thank you
    Thankyou for sharing your story about your extraordinary and beautiful child. It’s very brave to open yourselves up to the judgement of others as you have. I can feel your resolve, and that the negative opinions by others are like water off a ducks back. January is an inspiration. She is a teacher. Sadly though we are mostly uneducated and ignorant as to new and rare conditions in a child, thank god though for social media! your story is now out there and circulating and who knows who it will come across… another parent struggling with an undiagnosed child, an expert in the field of mental health, the general public who may stop to think next time they start to judge or critic something they don’t understand. Whatever accomplishments January achieves in the future, she has already made a huge impact. x

  214. from laurie,
    WOW! You and your wife have been given a very unique gift from GOD, Jani, you were chosen to raise her, and you said it was an honor and a priveledge to have her. It is. This is how I feel about my 2 girls. One is 22, ADD and BiPolar.And my 19 year old was born w/Apraxia of speech,language,& hypotonia. She lives w/ Depression and anxiety. she is that of a 2nd to 3rd grader academically. But is a 19 yr old sometimes . I also live well with Major depression,Major anxiety,& PTSD now. I was diagnosed when I was 13. I am now 54.
    I am a member of Nami GA.
    We just had a Walk, Oct 1st in Atlanta,Ga.For NAMI GA.”National Alliance For Mental Illness” And I have taken the Teachers class to teach NAMI BASICS. An Educational class, 6 to 8 weeks long, for parents with children or adolescents with a mental illness. It is true, many 2, 3, 4 year olds have been diagnosed with Schizophrenia,or schzo-effective disorder. This is a very hard class, but it really helps the families. I know you have your hands full, but you and your wife would be excellant teachers for this class.
    I am going to forward this to our State Trainers to send out to all our parents. You and your wife have received the Parents of the Century Award, loving and taking care of Jani. An Inspiration to all of us living with a Mental Illness. God Bless you and yours.

  215. Jani’s journey and yours
    Hi guy’s
    I have seen your story last night on tv let me tell you when I saw you both interactinng with a group of other childern and parents discussing all the issues you both have you were talking about my klife same situation different problem.
    My child had Congenital Heat disease and brain damage from his operation that effected his speach, so Autisum was ripe in regards to behaviour.
    I started a play group for Handicap Children and ran that for 8 years because of my child he as will Jani changed my life so much for the better, I learn so much in that time and yes it was hard work.
    The only this that has happened I should have had more time with my normal child this had a grave effect on his talking at the age he should have and many other things.
    What im trying to say to you it all looks hard I know and people will only every half realse what you are going through in your mind what you want for Jani in the futur, she is your angel she has been given to you for a reason you will not see until down the track.
    Don’t let this effet both of you in marrage carry on together its a stronger force for both of you to be there always
    I want to tell you great things but can’t as I know where you are at i’ve been there to I have since lost my son, but have a great relationship with him in death as he is with me always…
    Love you both keep it up for your beautiful girl

  216. John 10:10
    Dear Schofield Family. As I write your surname I am reminded that my vicar when I was confirmed in the Church of England at age 12 was called Canon Schofield and also that there is a Scofield Study Bible. My mother wanted me confirmed so that I could be my sister’s godmother. My sister has been “ill” since she was about 18 (nearly 30 years)and has now been diagnosed as Paranoid Schizophrenic, so I do know something of what you are experiencing. However, since I myself was born again 17 years ago when my husband left me, I also know the power of God to heal. I was put in a psychiatric ward in 1984 after doing battle with a psychiatrist who wanted to give my sister electric shock treatment. I walked out and refused to take medication (because I had seen what it had done to my mother and sister). I was then put in a psychiatric ward in 1994 when my husband left me (I asked for ten thousand volts but they refused to give me it and I refused to take medication). I was again put in a psychiatric ward in 1995 and again refused medication. I do not believe in mental illness, but I do believe in the fragility of the human psyche that can be damaged by life experiences and that those wounds can then be infested by demons, but that those demons can be removed and those wounds can be healed by our loving Father God, who sent His son to die that we might be healed. I believe that because of my experience.

  217. John 10:10 / Matthew 10:8
    Dear Schofield Family. As I write your surname I am reminded that my vicar when I was confirmed in the Church of England at age 12 was called Canon Schofield and also that there is a Scofield Study Bible. My mother wanted me confirmed so that I could be my sister’s godmother. My sister has been “ill” since she was about 18 (nearly 30 years)and has now been diagnosed as Paranoid Schizophrenic, so I do know something of what you are experiencing. However, since I myself was born again 17 years ago when my husband left me, I also know the power of God to heal. I was put in a psychiatric ward in 1984 after doing battle with a psychiatrist who wanted to give my sister electric shock treatment. I walked out and refused to take medication (because I had seen what it had done to my mother and sister). I was then put in a psychiatric ward in 1994 when my husband left me (I asked for ten thousand volts but they refused to give me it and I refused to take medication). I was again put in a psychiatric ward in 1995 and again refused medication. I do not believe in mental illness, but I do believe in the fragility of the human psyche that can be damaged by life experiences and that those wounds can then be infested by demons, but that those demons can be removed and those wounds can be healed by our loving Father God, who sent His son to die that we might be healed. I believe that because of my experience.

  218. Maybe what Jani sees is real…
    Hi,
    I think you are great parents. Your love and patience is amazing! I started having several imaginary friends (with their own lives and families) at the the age of 13 or so I thought. I am an identical twin but I never shared that with her. When I was in that world, I got lost there. It felt as if I could see everyone else around me but in another world as well. At age 22 it was serious where I was self-mutilating. My parents didn’t know who I was. I didn’t either. I lived on sedatives just to keep me on an interactive level. My first marriage broke due to this. I was married for a few months at the age of 26. Doctors diagnosed that I had brain tumour symptoms but no tumour, infact I was healthy. He sent me to a psychologist who said I was suffering from Dysthemia bordering on bi-polar. My IQ was high. I read at the age of three. When my sister watched Ron Howard’s “A Beautiful Mind”, she said it reminded her of me. I used to see these “imaginary” beings but they were REAL. Not just to me, others saw what I saw too. My parents took me to a “healer”. I told the healer that I was mad, but she said that I was not and that what I was seeing were supernatural entities called “jinn” or spirits. I suffered from their affliction for years, still do but its much better now, Thank God! When I would be in my trans state or under the imaginary beings attack, I would lock myself in a room and after that it felt as if I was there and also not there. As if in their world but I know that I was in my room. I know I sound crazy but I’m telling you my experience. I am now 34 years old. I recall waking up with all my hair shaven off, my hair in abundle on the floor with a note written in mirror writing, a handwriting I didnot recognise. When held infront of the mirror, it read “This is what happens when you come close to her, she belongs to us”. This note I handed to my mother. I bandaged the bleeding gashes in my flesh. Long huge insignia of some sort cut in my flesh with a blade that I don’t know how I came into possession of. This happened for more than 10 years, each time I would go to healers until even they would send me somewhere else. This is my lifelong battle until the beings stop their harassment. I go to healers often to keep them at bay. Sounds like a movie? Well my life may well be movie material. So maybe Jani’s imaginary friends really do exist.
    I will tell you this, entities of another kind do exist. According to Muslim belief, they are called “Jinn” like Genie you know. Other beliefs call them spirits. They are not souls of the dead but they are shape shifters. You get good and bad, but there are more bad than good. I know some people will crticize me but what I have written is my experience, everyone does’nt have to believe it.
    So maybe Jani really sees what’s there. Maybe she is really schizophrenic. But I think she may have seen what is exists.
    We have learnt to use what works for us, what calms me and keeps the attacks at bay. It has alot to do with positive and negative energies. Before this happened to me, I never believed in these things. I didn’t know what energies or chakras were, but like I said I use what works for me. I don’t want to be high all day.
    May Jani get well. God bless her parents!

  219. Thank you ;0)
    I just watched the show about your family, with enormous interest and felt compelled to see how you are all going. Good, I hope!
    I would also like to thank you so much for allowing filming, which can only help with community understanding.
    I work in Australia for an organisation that supports adults with disabilities. As you can imagine, confidentiality prohibits me saying anything specific. We support people with various care issues.
    Thank you for giving me greater understanding about issues that families have experienced with people under 18, every thing helps in our work. We strive everyday to assist people have the best possible life.
    On a personal note, I have a son, who has had issues since birth, no where near as challenging, that don’t really seem to fit in any catagory. He never seemed to sleep, he would open the fridge at night as it was the only light source he could reach, and play by the light. We lit fires, huge raging fires in summer, to stop him from crying. So your comments about sleep and stimulation really hit home to me in a way that I had not thought of before. Interesting.
    thanks again,wishing you all the best
    Sue

  220. You sound like an incredible father–Jani is amazingly lucky to have such wonderful parents. This must have been unimaginably difficult for you both.

    I presume someone has raised the possibility that Jani has some form of synasthesia, though clearly that’s not all that’s wrong. But, since I didn’t see anything in the comments about that, or on your site, I thought I should just make sure.

    I actually found your site via this article: http://incorrectpleasures.blogspot.com/2010/04/jani-schofield-im-sorry-that-ill-have.html The piece does acknowledge that synasthesia isn’t a perfect fit for Jani’s experiences, but it also seems to ignore a good deal of her story now that I’ve read how you describe it. Still, the type of names she gives her hallucinations is quite striking, as is her rejection of her name, a month of the year. Perhaps, if she does have some form of synasthesia, amongst other things, accommodating that aspect might give her some degree of relief.

    I wish you all the best of luck.

  221. none
    HI. I am so touched by Jani’s story and your efforts to help her. I am also a Christian like so many others who have commented on here. I suggest that you at least read the new testament in the Bible. What have you got to lose? You’ve tried everything else. I don’t think Jani is “possessed” by demons but she certainly could be tormented by them. The good news is that Jesus gave us power over all demonic spirits, all of us who have given our lives to Him, that is. And, yes, God works through humans, that’s why He gave US power and authority over all these things. Read the Bible for yourself and prove what I’m saying to you. Learn about the power of pleading the blood (of Jesus)and taking authority in His name. I’ve done it over my family and it works! When I learned about these principles and began to operate in this and take spiritual authority, miracles began to happen. My oldest daughter was healed, God began to move for our family and richly blessed us. Please, try reading the Bible. Learn about spiritual warfare and about the authority we have in the name of Jesus. Ask Him to be your saviour. He will come into your lives and your family will never be the same! I will pray for your family and Jani to be set free from this. The Bible says that He hears our prayers. May God bless each of you.

  222. im praying for jani
    ive been reading your story over and over again its very overwhelming my heart goes out to your family. i am only a teenager and ive never had schizophrenia but i have been through and still going through alot ive been in and out of therapy and hospitals and gone through so much medication that have gotten me so sick, i feel like theres no hope sometimes.this is truely scary i really wish she didnt have to go through this horrible illness. being a kid is supposed to be the happiest times. im so sorry what you guys have to go through i really wish life wasnt so cruel. sometimes it makes you focus on the good times though.you guys are in my prayers.

    Note from Michael: Thanks but I think it is harder what she goes through. It is so easy to forget, especially when things are going relatively well like they are now, that she struggles with this entire world we can’t see. Thank you for reminding me to be more compassionate and be grateful for how far she has come.

  223. You are both amazing parents. Keep up the strength and it will pay off someday, Jani is an amazing child. She has so much potential to achieve good in this world despite her condition. 8)

  224. A few words, but firstly… Hello
    I’d like to say hello to you and your family!

    My name is Carissa Pietsch (PA) and I am a college student minimally researching childhood schizophrenia for a presentation and I have been so touched by your family’s story. Jani is a beautiful child, and you are all wonders in my eyes. I am so happy to know that there are people who will give the world just to help your family amidst a predominantly negative society in disbelief. I know so little of your life and I do not try to understand but I do empathize with the fact that reality is often times hard to grasp. I will not get into details; this is about your family.

    In college I am studying music therapy. I wonder if you have heard of it? Whether or not music therapy is a suitable approach for Jani, I cannot ascertain. However, I wonder how prevalent music is in her daily life. Based on the videos, I can see that you have arts & crafts activities for her in her apartment, and I am so glad! Creative arts are such a necessary part of any person’s life, child or adult. I wonder about music. Whether I am listening, making, or composing music, it has been such a wonderful outlet throughout my life.

    I commend the work your family is doing. Do not simply praise your daughter’s courage, hope, and love, but also your own. As parents, you are wonderfully brave, courageous, and filled with hope. The amount of love you are giving your children is unmeasurable, and so filled with compassion. I will continue to read your story, and I look forward to hearing more about Jani in the future. I am excited for the positive changes your family will undergo, and the impact that your story will have in this world.

    Note from Michael: Hi Carissa. I am a huge believer in music therapy. Unfortunately, there doesn’t exist (at least that I know of) a formal music therapy program outside of some hospitals (like UCLA). However, Jani loves music and loves singing. She comes up with her own songs all the time.

  225. Jani
    My name is Alyssa and what you wrote just touched my heart. I understand what Jani is going through because I have Bipolar Disorder, and I myself have heard voices telling me to hurt myself and others until I did what they said or else they would hurt me. I had to be hospitalized in a psych ward for a week. but it just got worse by the next year Iwas in and out of the hospital and ended up in residental treatment for five months. until this day I have been in and out of the hospital. I understand what Jani is going through. I am fifteen years old and I still don’t have friends because they either think i’m wierd, they don’t understand, or they make fun of me. I have been taken off all my medicine. and I am fighting to stay out of a residential facility right now. And like you said family is the only thing that I have. I wish I can talk to Jani or meet her I just want her to know that I am thinking about her and praying for her and that there are people here for her. God Bless

    Note from Michael: Thank you for sharing, Alyssa. Maybe one day she and you can meet.

  226. Jani
    I was just wondering what the name of the book you are/were writing is, and if you are done and it is in stores. Because I would like to get it if it is.

    Note from Michael: It is called “January First.” It is complete but won’t be out until August 7th, 2012.

  227. Jani
    I’m sorry I keep writing but I had a question, I know that Jani has a mental illness, but was Bohdi affected with any mental illness or disease?

    Note from Michael: At this time, Bodhi has been diagnosed with mild/moderate autism. Whether there is anything else (hopefully not) is unknown. He lacks Jani’s verbosity and struggles to communicate his feelings so what might be going on inside his head is a complete guessing game.

  228. Hello Michael,

    I just wanted to write and let you know how amazing I found Jani’s story.

    It was just by chance that I came across her on youtube last night and I was totally blown away by her- what an absolutely amazing girl. I have struggled my entire life with mental illness both in myself and my mum, so Jani’s story has really moved me.

    I began self harming at the age of about six, attempted suicide by the age of 11. I’ve had bouts of mania and psychosis, delusions and hallucinations (both in childhood where i thought there was a girl sitting on my garden wall, and as a young adult), paranoia, anxiety, insomnia (hense finding jani at 6 am 😀 )… the list of symptoms and problems goes on.

    Over the years I found it hard to find help, especially as I was searching for it on my own as my mum was too ill to help me. When i was 13 i took myself to the Doctors to find someone to help me. Mostly doctors have tried to dose me up with medications and just pack me off to deal with it my own. I’ve had all manor of diagnosis thrown at me- most recently i have been told I suffer with Emotionally Unstable Personality Disorder with Bi Polar tendencies and traits and psychotic depressive states. There was absolutely no treatment, medication, therapy, information or support offered to me after I was told this. I was just dismissed.

    Despite me being relatively well known to the psych teams in my hometown and having been in contact with them for ten years, in and out with psychotic episodes, manic episodes, severe depressive episodes, suicide attempts etc they continually lost my medical records, claimed they had no knowledge of me or me ever being at the hospital as an out-patient ever before (and when you’re saying this to someone who, at the time, is suffering from paranoid delusions that people are conspiring against you and a psychotic episode that is telling you you’re disappearing, you are REALLY making their problem worse) they failed to send psych appointments which were promised and failed to provide me with even simple CBT. I have been ignored and pushed under the mat by medical teams in the UK so I absolutely applaud the work you aim to do to provide help and support for children suffering with these types of issues.

    What I wanted to say was that although Jani is very different to me, obviously, I honestly believe she will be ok. I’m only 22 now and have managed my illness on my own since childhood and despite my lack of support I’ve managed to get myself into university- Jani has an obviously overwhelming amount of love, support, kindness and understanding from you and your wife and I think that, coupled with her supreme intelligence that will ultimately help her understand what is happening to her, is all she needs to grow up happy.

    Sorry, didn’t mean to ramble on and on like I have done (hello mania 😀 )

    Sending love from the UK 🙂 xx

    Note from Michael: Charlotte, thanks for writing. I have so much respect and admiration for continuing to fight on your own behalf even when the system fails you. The US is pretty bad (as the world is when it come to providing services for the mentally ill) but the UK is even worse. Several others like you have told me this. Diagnosis isn’t important. Meds are important but not enough. What is important is life support, having people around you who can help you be everything you want to be and will be there without judgment when you are in a psychotic episode to get you through it. It is SO simple and it pisses me off because government agencies JUST won’t do it. They would rather go with the simpler option of just getting rid of mentally ill (in residentials here-not sure in the UK) rather than helping them to live and prosper alongside the rest of society and teaching the rest of society to live alongside them (and us).

  229. Hi thanks for responding Michael,

    I totally agree with your point that diagnosis and meds are secondary to support. I 100% believe the same. I’ve tried various medications and, honestly, I’ve never been a fan- I’ve never been able to cope with the side effects. I continue to take beta blockers as and when I need them for panic attacks; but mostly all I’ve ever wanted when I’ve approached the doctors is someone to talk to on a regular basis, who understands what I’m talking about and who can maybe help me rationalize things when my mind gets out of control. But that seems to be the one thing Doctors over here don’t want to do.

    And also, many GPs over here are not equipped with the correct knowledge to help mental illness patients. I was once told by a GP that mental illness was a fallacy!! Needless to say i just stood up and walked out then and there. But i was speechless.

    I know America is big on it’s residential homes and locking people up in that way, over here (in my town at least) although there are secured psych wards they don’t seem to send people there very often. Mostly here people are left to rot away in their homes. My mum has suffered my whole life with depressive illness, when we were younger she had a complete breakdown, there was never food in our house, when i opened cupboard i’d find rotting remains and maggots and we had no heating for 3 years, eventually she was sectioned, we were sent to care, she had Electric shock therapy, they only allow 3 doses here, the fist 2 she didn’t respond to finally the third seemed to work and shortly after she was released. Despite them knowing she had a history of severe mental illness she was left to deteriorate again, now me and my younger brother are her carers. and have been since i was 16. She weighs 5 stone, and doesnt leave the house. when she gets bad she screams at herself in the mirror. She has threatened me with knives, and has disappeared in the middle of the night. recently she was taken into hospital because she developed dysatonia thanks to an adverse reaction to her Venalafaxine and they tried to dismiss her when she was so out of her mind she was trying to use her inhaler as hairspray, rustling a paperbag in her hand and telling me she was eating her dinner… she was on another planet. They lost her in the middle of the night, she walked off ward (despite me telling them to security tag her) and she was found wandering the street hear the hospital. when i said i wanted to complain the nurse laughed in my face. they tried to send her home, so i videod her and threatened to sue them if they tried.

    They promised after care. We received none.

    I have no faith in our system in the UK. if you are rich and can afford private healthcare, then you’re ok. If you’re not, you’re basically fucked. I work hard everyday to try and keep myself level, and keep my mind occupied with uni so i can try and work to support my mum financially. One of the only things that keeps me going is fear, because i know if i slip we’ll both decay together. No one here will help us.

    I don’t believe in God, I believe in the strength, passion and love of people, and what you and your family are doing to help support others in situations like yours is highly commendable. You’re bringing light to the minds of people who live in the darkness in their heads, and relief to the people who struggle to hold them up.

    Charlotte

  230. Amazing
    Thank you for sharing your story. I am a varying exceptionalities teacher and after watching your story, reading your blog, and watching your videos you have given me such an amazing insight to both your everyday life and hers. I have been teaching for over 10 years and have come across multiple different types of mental illnesses in children. Unfortunately many of my students were unable to verbalized themselves as your daughter has. So I just wanted to thank you for giving me a deeper understanding and glimpses into your daughters life. I will share the support group you had posted earlier with some of the parents. Thank you again and God Bless!

  231. Happy Holidays
    Well Id like to start off by saying that i hope you have a Merry Christmas. :]
    i suffer from an illness much like Jani’s. Only not as bad. I almost constantly hear and see things that i now know are not really there. this started when i was about 8 and everyone just thought it was imaginary friends and i did not correct them. It was not until i was sent to the hospital in march (i am now 18, was 17 at the time) that they put me on meds (first was abilify) which didnt help at all and they have tried several others which never worked either. I recently got a cat scan on my brain because they want to rule everything out before giving me more meds.. I really feel for you and most importantly, Jani. Anyway i would absolutly love to meet her even though im all the way in jersey. i just feel a connection with her through everything iv read and watched. Wishing all healthy and happy holidays.

  232. Happy Holidays!!!!
    Well Id like to start off by saying that i hope you have a Merry Christmas. :]
    i suffer from an illness much like Jani’s. Only not as bad. I almost constantly hear and see things that i now know are not really there. this started when i was about 8 and everyone just thought it was imaginary friends and i did not correct them. It was not until i was sent to the hospital in march (i am now 18, was 17 at the time) that they put me on meds (first was abilify) which didnt help at all and they have tried several others which never worked either. I recently got a cat scan on my brain because they want to rule everything out before giving me more meds.. I really feel for you and most importantly, Jani. Anyway i would absolutly love to meet her even though im all the way in jersey. i just feel a connection with her through everything iv read and watched. Wishing all healthy and happy holidays.

  233. Happy Holidays!!
    Well Id like to start off by saying that i hope you have a Merry Christmas. :]
    i suffer from an illness much like Jani’s. Only not as bad. I almost constantly hear and see things that i now know are not really there. this started when i was about 8 and everyone just thought it was imaginary friends and i did not correct them. It was not until i was sent to the hospital in march (i am now 18, was 17 at the time) that they put me on meds (first was abilify) which didnt help at all and they have tried several others which never worked either. I recently got a cat scan on my brain because they want to rule everything out before giving me more meds.. I really feel for you and most importantly, Jani. Anyway i would absolutly love to meet her even though im all the way in jersey. i just feel a connection with her through everything iv read and watched. Wishing all healthy and happy holidays.

  234. Hi. I saw your story on 20/20 not long ago and just recently found Jani’s website. I hope this new year brings you and your family peace. I will pray for Jani and your family and help spread your story.

  235. Hi, I just wanted to share with you that you are not alone, which is exactly how you are feeling, I know because we feel the same way and are dealing with the same thing. My girlfriend saw your story on 20/20 and told me I had to read this. I am so thankful she did. If you ever want to contact me, please feel free – we are on the same meds and traveled down many of the same paths, only your daughter seems more able to explain things then our daughter is. God bless you and your family!

  236. Hello
    Jani’s story and the unconditional love you and Susan has hit me hard in the heart multiple times.
    I’m 17 and as a little girl, around 7 or 8, I first began to show signs of mental illness. I withdrew myself from friends and I would do nothing but cry. It started out slowly, I cried every day but only for about 20 minutes. The crying and panic attacks that soon developed began to happen for full days.
    I was taken to many hospitals by the time I was starting 5th grade (after an incident where the teacher decided to punish me for crying and screaming and dragged me to the office, which pissed my parents off a lot).
    I still remember to this day being asked by my parents and teachers and doctors if somebody touched me, or if someone was hurting me or if I heard voices.
    However, I’ve blocked out the majority of those years. The things I do remember are dark, as in harming myself regularly and locking myself in my rooms for hours on the end. I never went outside my house, I couldn’t stand being outside of a safe space….the thought of other children my age laughing at me, like they did before, for crying…it killed me inside. And don’t get me started on the moments where I split, as in I was convinced this was not me…that I wasn’t real.
    I was eventually diagnosed with depression, and put on medication. While the medication has helped me a lot over the years, it’s gradually starting to not work and I’ve began to look into the possibility of whether I had another illness, rather than what was diagnosed originally.
    Sure enough, I was right and I have been diagnosed with Borderline Personality Disorder.
    It’s still a struggle for me, I don’t get along with people my age because my mind constantly tells me they’ll judge me and that I’m worthless compared to them. I also have to remember to control myself when I feel like I have to harm myself, either by sexual means (IE, promiscuity) or by cutting myself.
    I am beginning to get better at talking about my problems though, and I hope that someday I can become an inspirational person to others.
    Jani and I both have different ways of looking at life, I think it’s the same for every person with a mental illness. She warms my heart and reminds me that I’m not a freak or weird, but that I think differently. Not in a bad way either.

    Note from Casey: I got this several days ago but I wanted to hold it until I had the time to give it the response it deserves. I am glad that Jani is an inspiration to you and it works both ways. She is always excited to learn about others living with mental illness. It helps her feel not so alone either. We are all “mentally ill” in one way or another. It is just a matter of functionality: how well can you function. Can you get by without hurting yourself. If you can, that is a huge success. Survival, Casey, is the biggest victory. Everything else is just gravy. Remember that and thanks for sharing.

    Michael

  237. Jani
    Hi Michael, I ran across the documentary yesterday regarding Jani as I was just flipping channels. it caught my attention because i am currently a graduate student to become a Licensed Mental health counselor,and just did a a study on psychotrophic medications and the demons that arise just from use of them! Jani’s story was heartwrenching. It is so evident that you and your wife are truly awesome parents and that the measure that you ahve been tested seems beyond imagination. Anyway I would like to continue to follow Jani and her challenges as well as her successes as I beleive it will assist me to better help my future clients and possibly as a result save someone else from having to wait so long for help, as it is apparent that the system has failed in Jani’s case. had she had proper diagnosis much earlier could it have made a difference? We may never know. I also agree with one other writer that Jani may have been created to be the next great “something” and I want to see what that something is! KNow you and your family will be in my thoughts and prayers. One question that I have for you is does yoru son show any indication of similar problems or does he exhibit typical little boy behavior. Ihope for your sake the alter is true.

    I would also like informaiton about Jani’s foundation. As Imove forward in my educaitonal pursuits, i want to make others aware of the challenges you face.

  238. Jani
    Hi Michael,
    I am a highschool student in Pennsylvania and I am currently doing a research paper on schizophrenia and one of the books i was getting information from had Jani’s story in it so i googled it for further information because it truly intrested me. I have watched movies and read books and stories about people with schizophrenia and i have never come across a story as heart lifting as Jani’s. You and your wife are very strong in how you cope with your daughters condition and i look up to you both for that. I would like to become someone who studies children with mental disorders and disabilites such as Jani and her story just makes me want to pursue that career even more. No one deserves to live with what she lives with and i would love to make a difference in the world. Jani is an inspiration to me and im sure she is to a whole lot of other people too. Even though she is young i believe she will grow up to be a beautiful and strong girl who is able to cope with her condition. She is in God’s hands and she was given her condition for a reason, to make a diference. Everything happens for a reason!
    If you or your wife or both could kindly email me that would be greatly appriciated. I would love to ask some questions about Jani’s condition for my research paper. I need to have at least one interview with someone that deals with the issue i am writing about and you and your wife are the perfect components for that.

    God Bless,
    Briana Gromlich

    Note from Michael: Hi Briana, we would be happy to help you with your research paper. You can email me at michaeljohnschofield@me.com. I am glad you are inspired to work with mentally ill children. There is a desperate need for child psychiatrists as well as psychologists/therapists who have experience dealing and are comfortable with psychosis.

  239. I believe that there are alot of mental illnesses in very young children that are not being diagnosed. People in the medical field and society in general do not want to accept the fact that a child can be born with mental diseases. My opinion is that with all the chemicals and additives in our food and in the air, what do we expect. I’m not going to ramble on, I just think that we’ve brought alot of this on ourselves and the one who suffer most are the future generations. I do wish all the best to Jani and her family.

    Note from Michael: Thank you for your good wishes. I have no idea if modern chemicals are contributing factors but I do know that schizophrenia has always existed. There are records describing what we would now consider schizophrenia dating back to the Greeks (which were themselves copies of earlier reports from even older cultures). Also kids like Jani used to be institutionalized. Jani’s previous social worker at UCLA (now retired) told us that back in the 60s there were kids like Jani in the “back ward” of Camarillo State Hospital (which is now closed). It’s always been here. It just hasn’t gotten the attention it is now getting.

  240. Hi…I have come accross your story as I have been trying to find help for my 9 year old daughter. I think about your family often and hope that your family is finding happiness. I have been following your blog and reading as much as I can find about Jani and what you have done to help her. My Saige has been in the Sheppard Pratt Psychiatric hospital for 10 days now. The doctors say they are “stumped” and I am exhausted. It is 1 and 1/2 hours from my house to the hospital. We have been searching for answers since she was 4 when she was first diagnosed with ADHD and intermittent explosive disorder. She sees monsters and talks to them although she doesn’t seem to be afraid of them anymore, maybe its the meds she is on. Since being hospitalized they have done an MRI, EEG, and now want to do a sleep study because she does not sleep through the night but begs to sleep during the day. She became violent and was put in seclusion 3 times yesterday finally falling asleep the last time. I will spare you all the details but I am wondering if you have any words of wisdom for me? I want to push to have her discharged because I can create an environment at home that works for her and keeps her stable. The thought of her crying herself to sleep in the locked quiet room is just too much to think about. At the same time, I want to get the bottom of what is going on and get her help. Any thoughts would be really appreciated or even a resource or somewhere we can turn to.

    Note from Michael: Sheppard Pratt is one of the best psychiatric hospitals. I am surprised they do “quiet room.” Is someone with her when she is in there? Unless Sheppard Pratt or your insurance is pushing for discharge I would give them more time. I realize this is hard but if anybody can figure out what is going on with Saige it is them. They are the East Coast equivalent to UCLA. Feel free to email me directly at michaeljohnschofield@me.com. I am always happy to assist other parents and will give what advice I can. I can also put you in touch with other families in the area. We have a private online support group and I know a great family in Maryland (I know you are in Delaware). The closed, private support group is at http://health.groups.yahoo.com/group/parental-support/

  241. compassion
    My wife and I read your story. You have all of our compassion.
    I am also impressed that, instead of turning to religion or prayer, you went deep within yourself and tapped into your inner resources of courage, strength, and love:-)

    Note from Michael: Thank you. I have no issue with religion and I do pray (not formally). I just believe God works through people and God (however you understand it) has sent us some wonderful people and we’ve been sent to others.

  242. A suggestion
    Your child is seeing jinn – it is well known in the Muslim world. Do some research into it(not youtube full of wierd people, the truth is hard to find on the internet because google sensors everything in Islam and ranks the wierdest info to put people in the dark). I can send you sites to read about this – research and sholars from both the east and west that attribute this to the Jinn. This is from experience. My sister had the same disturbing behaviour, i didnt believe her when she said things were around her, telling her to do bad things, she would always hear clicking noises and she would speak to them – looking to her side or in the distance. She could not maintain eye contact because she said that most people had evil eyes. Your daughter is very sensitive and has the gift of being in this world and the realm of the Jinn. I never believed it myself and i guess you probably wont either but give it some thought. But when i paid attention to what she was seeing and sat I looked at where she was staring I saw Shadow people dashing around.. and movement, the more i recognised it the stronger my senses became sharpened to them. We tend to blind ourselves to this realm, but it exists it is only because we are not really looking. I had to play the following verses from the Quran all night (it is known as a protection) it works and will keep her safe,they leave after a couple of days if you leave it on constantly, the bad ones will leave and good ones will fill the space in the realm she is in. They may also protect her from further attack. It is interesting that she says she goes to an island – In islam the Shaitan of the Jinn (i.e devils of the jinn not the good jinn) live on an island called Mountain Qaf or Jebel Qaf
    If you are interested in learning more email me and I will try my best to get the information.

    http://www.youtube.com/watch?v=f83-eA_eJc8 (this one is very strong protection and will help immensely)

    Inshallah, God helps your little girl – this is a physical illness but rooted in a spiritual attack. These entities run through us like water – we are penetrable and they play on our senses, feelings and thoughts if they want to possess a person.

  243. Wow
    Jani is the most interesting little girl I have ever heard of. I have read this article three times today and I will probably read it again tomorrow. I wish I could meet your daughter, I really do. I wish I could talk to her about what Calalini is like and convince her that this world is better than the other. I honestly wish there was some miracle a doctor or priest could perform for you lovely people and all of Jani’s hallucinations would disappear, but then again, Jani seems to like them. Well… Some of them. Anyway, I wish you all the luck in the world. For you, your wife, Bohdi and Jani.

  244. Thoughts and prayers for you. You are truly courageous. I am glad that despite the trauma that you have lovely times with your children. Love and support. xo.

  245. Childhood-Onset Schizophrenia
    With parents like you Jani will be able to tell her story, but her story won’t be the same as yours.

    I grew up living through the nightmares of having Schizophrenia as a child I am now 39. I unfortunantly wasn’t diagnosed till my mid 20’s, but with looking back through medical records the doctors saw all the signs that I had schizophrenia as young as 2-3 yrs old. My parents were not as attentive and loving as you are with Jani, so I went undiagnosed or supported for over 20 years. I was even blamed for my parents divorce at 4 yrs old, I was being told to pull my little brothers hair and push him down by the voices, parents wouldn’t listen. You are doing the best thing for Jani and that is staying together as a family and loving each other. I have no doubt that Jani is a genius, she will learn how to cope and adapt as that is what she is learning for her Mom and Dad, I don’t use mother and father since to me Mom and Dad are earned names and you have earned them in spades.

    Note from Michael: Thank you, Eugene, and thank you for sharing your story. I don’t know if you are on Facebook but we have a private support group for adults with mental illness if you are interested: https://www.facebook.com/#!/groups/140248069431111/

  246. There will be a day that Jani will be free! I have sat in my bed and read about Jani for the past two hours. There are no words for how I feel at this moment. I have a beautiful blonde hair, blue eyed, baby girl lying next to me. I cannot tell you how many times I have stopped, put my hand on hers, and thanked God that she is healthy. There are parents that walk away from their children, give up, or even hurt their children for no reason at all. You are doing what God intrusted you to do. You are being Jani’s father unconditionally. What an example to all parents in this world. I respect your privacy and decision to not discuss your beliefs or relationship with our Father but I do want to tell you that God loves Jani. God is in control of all things and will never leave you nor forsake you. If you have faith as small as a musterseed, you can command the mountain to move and IT WILL. I will begin praying today and everyday thereafter that God will heal your precious daughter and give her life and life abundantly. You and your wife are an inspiration to me! I will also pray that Jani will know God and fully believe that He is ALWAYS with her. With God for you….who can be against you? I am thankful that I came across your name tonight and can follow this amazing child that will one day be healed and free from the load that she carries. If not here….there! God bless you and your precious family!

  247. Same here
    Hello, i’ve just heard about your story now and I wanted to share a little bit of what is going on here in my family. So I have a cousin who is about 6 or 7 years old, I am not really in touch with that side of the family but what I’ve heard recently really concerns me. She is a very active girl and they have always thought she was a real bad kid (her elder brothers have always done ‘bad’ things as kids and now, in their youth, they smoke joints and that kind of thing) and they thought the girl might be influenced by her siblings and that is why she was acting so bad. But recently, last Christmas, she started to say she saw people who talked to her and told her to go with them. She said she saw men who took her to a picnic and so she didn’t want to sleep alone anymore. They thought there were just children’s excuses not to go to sleep, but it seems as the thing got worse since she spent 2 weeks in a psych center, where she behaved terribly and she was tested to see what was going on. Everything seems to be back normal now, but i’m still concerned of what is going on in her mind…. You are not alone, many families are going through this so im sending strenght all the way from Europe, keep up the good work.

    Note from Michael: Thank you. Nice to hear that there are treatment options available in Europe.

  248. ….
    That is the most beautiful thing i have ever read, Jani is my hero and I think she is the bravest person I have ever read about, you and susan are by far the biggest blessing to her, and it is not only her courage but yours that is truly inspiring. Please tell Jani, if you can, that there are people who understand, who havent even met her but are praying for her, she has to know she is not alone. Even though i have only read this, it is one of the few stories that makes you give a little bit of your heart to love and hope for people you have never met or seen. Best of luck, and though i am an atheist, i would like to say may God be with you, and believe on the off chance that there is one, only if to make things easier and better for you guys and especially Jani and Bodhi.

  249. I have seen Jani’s story several times, first on Oprah, then on another documentary and then 20/20 I think it was. I have been heartbroken for her and your family ever since I saw the story a couple of years ago. My son has autism and while it doesn’t compare to what you all face, I feel the pain of wanting nothing but happiness and health for your child. As I watched her story the other night I prayed for her freedom from this terrible thing. I hope that the right help comes along and that she can live the beautiful life she deserves to. You guys are amazing parents to stay vigilant in your fight for her. Best of luck.

    Note from Michae: Thank you, Char. The 20/20 was filmed two and half years ago. Jani is doing much better now. She is not completely out of the woods and probably never will be but the violence is pretty much gone and she is much more “present” than she was.

  250. People helping people.
    I’d come across Jani’s story a few years back. I can’t remember where, I want to say an HBO documentary, but I can’t be sure. While starting at videos for the “Marine’s Hymn” (ya know: From the halls of Montezuma, to the shores of Tripoli…)& wound up with one about Jani, so yeah; go figure how that happened. Anyhoo, have you ever thought of staring a fund which folks could send some $$$ for Jani’s needs, including much needed respite for Mom & Dad? While many of us our fighting to keep a roof over our heads & food on the table, there are definitely some of us who would surely be glad to help out. Cali is an awesome state, but it has been financially bled dry by those who abuse public assistance & other things. I know you love it there but it might be a better idea to contemplate moving. Although I’m sure you’ve also looked into govt. assistance, such as Social Security for Jani, maybe you can find help with your local politicians who can help that come into being. My thoughts on Jani have always been a sort of fear that she is living a fast & hard packed life as if to make up for what will be an early end & I hope that fear is unfounded. I worry about the medications used to treat her, as you’ve already seen & experienced what can go wrong with them. I send you, Sue, Bodhi & Jani the best & am dead serious about wanting to help if you have a fund set up. It won’t be much, but perhaps with others, it can help take off a lot of the strain & struggle.

    Note from Michael: Hi Kerry, you can make donations to help us via Paypal at donations@janisjourney.org. There is also a link about half way down the main page on the left side: https://www.paypal.com/cgi-bin/webscr?cmd=_flow&SESSION=mUmPea0doJmyLUJwlB7XATYBi8BnlV86nnBlHLDAZSAyHCXeaMVZ9ha3q1K&dispatch=50a222a57771920b6a3d7b606239e4d529b525e0b7e69bf0224adecfb0124e9b61f737ba21b081989d37bd8af37ad9708d2162cdad4a70df

    I don’t know that we will stay in California permanently, but right now the school district we are in has built a unique program for Jani that works for her. I wouldn’t want to consider moving until she ages out of the elementary school district. I also teach at Cal State University, which allows me to have full benefits despite only teaching two classes. Health insurance is vitally important and I couldn’t get it as a part time instructor any where else and still have the time to spend with Jani which she needs. Also California is all Jani has ever known and she doesn’t react well to change, which can send her into psychosis. It’s not out of the realm of possibility that we will move at some point but not right now. Also her doctors are here, doctors who have seen her for years.

  251. If u put her with her peers in a gifted school for gradually increasing increments of time she would want to be present more in the real world rather than her imagined world– she would want to get out of the state that she is in and want to be more like other girls of her own age. Maybe you should reason with her that she is larger and more powerful than 400 and Wednesday and that she should be telling them what to do rather than them telling her what to do. You should ask her how a rat and a cat have power over a person. ( You know in a subliminal way– like with hypnosis or making her relaxed with a soothing voice and a gentle massage and keep on repeating – that she is more powerful than 400 or Wednesday). Polyunsaturated oils from fish have been shown to be beneficial with all types of mental health issues. She could take fish oil supplements- they will mellow her and make her more responsive to the antipsychotic medications…

  252. God bless you and your family. Jani is strikingly beautiful and you can see she has quite a bit of intelligence. I watched a documentary about your daughter a while ago and log in to your site to see if anything has changed for her. My brother was diagnosed with schizophrenia at the age of 15 (he is 56 years old now). He was pronounced one of the more severe cases the doctors had seen. My father had very good insurance from his job. The only piece of advice I can give is to get your daughter on Social Security Disability before the age of 16, so she can collect a higher amount (as a juvenile diagnosed she will get a higher amount monthly (because SSD will come from the parent’s income) than if diagnosed as an adult and never worked). This should be no problem but when hospitalized around the age of 15 push to do this. It will affect her monthly benefits for life. I can say that after years and years of extremely bizzarre behavior the meds seemed to take better effect (he is on Risperidol now also) but even the Haldol seemed to work better, eliminating active auditory hallucinations. He seems drugged (large dose) but not hallucinating. There are many instances I know of where in the fifties these patients do get a lot better. Hoping and praying for Jani that newer more effective drugs will be invented or that, perhaps because she was diagnosed so young, her improvement will come earlier, in her twenties or thirties. However, her case is obviously more severe than adolescent onset. She is blessed to have the support of two incredibly devoted and loving parents. You two will need more rest. Maybe you can get a mother’s helper for a few hours, put Bodhi in school, and the parent watching Bodhi at the time can then catch up on sleep. I am disheartened by some of the comments, after all the education by the media that people are still giving advice for mental illness such as hypnosis, etc. Schizophrenia is a PHYSICAL illness, though classifed as a “mental” illness. The structure of the brain is different and simplistically put there is a problem with the neurotransmitters of the brain as well.

    Note from Michael: Thank you. I am hopeful. Jani is already getting better as she gets older. She is 9 now and she’s come SO far.

  253. update
    I too looked up Jani just to see if there was any news of progress after seeing her story on Oprah I think. I am so happy she has made progress and will continue to do so with the passing of time I am sure. Although my daughter has not suffered since childhood like Jani, after some drug experimentation at the age of 19, we’ve lost some of her and her struggle to find herself again and the sheer helpless feeling I have as a mom is at times overwhelming. So in some respects, I have at least an idea of how you may have felt at times. I wish Jani all the best for some sense of normalcy in her life as I do for my own daughter and will check in now and then through the years hoping for her continued progress. Warmest hugs to you and your family.

  254. Hi Michael and family.
    I am a registered psychiatric nurse in Ireland,and on a daily basis try my best to help people with mental illness however I can. Firstly can I say thank you for sharing your story with the world. January is a beautiful girl. I have worked with children who have a diagnosis of early onset of childhood schizophrenia, and I have seen how the illness effects the person and the family. I have seen the absolute hurt and desperation in parents eyes as their beautiful baby slips into their own world that has such limited access for the rest of us, no matter how hard we try. I have had the privilege of listening to children share with me their worlds, as they live it. One boy once said to me “its organised confusion” I have never forgotten this.
    Michael I would like to express you and you wife have done all you can and more for January, and never stop. Not unlike a stroke, heart attack, diabetes, early intervention and continual support has shown to improve prognosis. I’m very interested about how January is now and how she is finding the drug Clozaril/Clozapine I would love some feedback from you I am currently undertaking a study/research in Ireland of anti-psychotic medications and their side effects impacting on clients/patients lives. Kindest Wishes to your family.

    Note from Michael: Thank you, Leona. You are the first mental health care provider in Europe that I have heard from who admits to treating child onset schizophrenia. Perhaps it is different in Ireland but UK doctors seem to be still in denial that children can even have schizophrenia.

    Jani has done very well on the clozapine. In her particular case, her WBC tends to run a little on the high side of normal so we have no issues with that. The clozapine still requires a supplement of 75mg of Thorazine but this is way down from the 200mg of Thorazine she was on before the clozapine. What I found interesting was that about a year after beginning clozaapine, she got so much better and was so much more present. Hospitalizations has dropped radically since then as well. I don’t know if this was a product of Jani getting older or if the clozapine increases in effect over time. She takes 300mg a day(100mg TID) which is the same amount she has been on for three years now. The issue now will be what will happen when Jani goes into puberty. Will the meds still work? I fear that, because clozapine has worked so well I am afraid of the day when it doesn’t.

  255. Some well wishes
    I just wanted to tell you and your family that Jani’s story was so moving and provocative that I felt the need to express my sincere hope for her happiness. I’m a graduate student in New York City, and, until last night, I never knew about the existence of child onset schizophrenia. After watching Jani’s story, I couldn’t sleep–I kept seeing that image of her as a little baby girl fixating intently on the ceiling at some demon only she could see. I cannot imagine the pain and terror you live through on a daily basis, but I can see that Jani still has two loving and supportive parents by her side. Wishing you all the best.

    Note from Michael: Thank you. I didn’t know it existed either until it happened to Jani. She is doing much better, two or three years on.

  256. Have you read “And I don’t want to live this life” by Deborah Spungen? Your story reminded me so much of her book. Her daughter likely had something very similar happening, but it was in the 50s and 60s, and never diagnosed properly. I highly recommend that book to you.

    Note from Michael: Nancy’s mom? Yes, I will check it out. Thank you.

  257. This story is so heartbreaking and meaningful to me. I think I will always remember it. January sounds like such an exceptional child, I have such a huge , great urge to meet her. I think that it’s people like her that help to remind us about what it means to be human, and to be a family. It also helps that she is absolutely gorgeous! And the luckiest girl in the world to have such a family who move such mountains for her; it’s so beautiful and enchanting to hear. The two of you were born to be parents, and the strength of your love and commitment is phenomenal. When I think about how clever and talented Jani is and must be, I believe her genius can only be equal to your standard of parenting. You’re an inspiration!

    Mental health is a topic close to my heart, because I have suffered from such illnesses since I was around twelve. Although it goes entirely without saying that I’ve never been through anything close to Jani’s experiences, I have at least had some taste of the hopelessness and desolation it can make one feel, the frustration upon realising that there IS no cure, no government program to help, and also I have witnessed the effect my condition has had on my parents; something not dissimilar to what you have written about. This affinity I feel just makes me want to meet you, and just chat for a while with Jani. I really hope to find some positive updates on her in the future, as I’m sure there will be. I hope all of you are well, and also that Bodhi is doing good. 🙂

    Note from Michael: Thank you and yes we are all doing much better. The only thing I would say is nobody is “born” to be a parent. You grow into it or you don’t.

  258. I do not know if you are aware, but your plight/blessing (since you seem to see it as that now) has reached the front page of reddit.com. Now millions of people around the world know of you,, of Jani and of this rare condition, and as Reddit has proven time and again, it can make the impossible happen. Here’s to hoping that the magic that is Reddit and it’s community can imbue some of its power and awareness onto you and your amazing daughter.

    Note from Michael: No, I was not aware of that. Thanks for letting me know. I hope it brings people to http://www.facebook.com/janifoundation so they can see all the other families with severely MI children who are in desperate need of help. There is no one for them and they keep coming to us.

  259. I am somewhat at a loss for the words that have come to my mind while reading your family’s story. However, one thing that I must highlight is that your daughter has already made an enormous difference in this world. She has set an example of courage for those who have had the blessing to read or hear about this story. Her struggles may have provided your family with endless confusion and hardship, but your daughter has provided the world with an icon, a miracle, and a heroic little girl who has the ultimate courage to fight in an uphill battle against her own mind. She may be have baffled many doctors and psychiatrists, but one truth that I discovered within her story is that she is an extreme example of hope. She is fighting against the incurable, and quite frankly, I believe she is winning. She is showing the world that she is bigger than those imaginary beings in her head. She sets an incredible example, and you have a remarkable family to have shared this ongoing struggle with the world. I know that your main hope is for Jani is to simply live to her adult years (and beyond), but the wonderful truth is that she, at such a young age, has made an accomplishment even more powerful than her own survival: she has made a global difference (especially for families with bipolar, schizophrenic, or others with mental illnesses). She is a blessing. Your family’s love is a blessing. Everything about this is a blessing in disguise and God’s plan for her is already beaming through with extreme force. Thank you for your willingness to share. God bless!

    Note from Michael: Thank you. A very profound comment and yes, I agree.

  260. Hello, I’m a man who has schizophrenia. I’ve had problems with mental illness since I was a boy. I’m now 40, and I’d like to be able to tell you that Jani’s life will get better but I can’t. Life with serious mental illness is very hard. However, it’s heartening to see that you’re doing everything you can, and as far as I can tell you’re doing the best you possibly could for her. Unfortunately that makes you one of the few, but your advocacy may change that. You and your wife set an example for parents and health care practitioners everywhere. Thank you for speaking out.

    The only advice I can give you is to watch those meds. Probably, some day they will stop working and you will need to find new ones. You will have to monitor her throughout her life because she won’t know when it happens. I hope this makes sense.

    Note from Michael: It makes perfect sense. I am always waiting for the other shoe to drop while simultaneously trying to enjoy what we have. Jani is doing well right now but I know the illness and I know that any victories are always tenuous. Yes, I am prepared to care for her for the rest of my life if need be and to ensure she will be okay when I am gone by creating a support network of other MI kids for her, kids who are growing up with her.

  261. This is an amazing story
    Jani’s story is incredible. What is even more incredible is your story, the way you two have gone to all lengths to see her through this mental nightmare. Massive applauds to both of you for all your efforts.

    I went through several psychotic phases during my childhood. My perception of reality was severely maladjusted between the ages of at least 8 through 15. A few months from my 16th birthday I decided that the drugs I had been fed since I was around 8 had a lot to do with my condition and I ran away (from the Los Angeles Juvenile Courts–not from my parents, both of which were too crazy to take care of me themselves). I stayed away and went through years of withdrawal, having decided that it would be better to die than to live the rest of my life the way it was headed. This was the right choice for me, but it is a long, long story, so I’ll just leave it at that.

    Somewhere in your story you mentioned that Jani’s hallucinations were controlling her behavior. Command hallucinations, you called them. I was lucky enough not to encounter many of these as I went through my psychotic phases.

    I have no idea if this will help you and Jani, but here’s my thought, and it’s just screaming in my brain. My thought is that you must overwhelm the imaginary data with real data. The more real data she learns, the more information and tools she may have to draw from in recognizing and offsetting the imaginary data. Remember that she started off as an information-hound, wanting to learn everything and anything. What if this was actually a defense against something that was already starting? What are the chances that reading her books on abnormal psychology, case studies, whatever you can get your hands on, will eventually fill her head with enough information to offset the imaginary realm she struggles against? It’s almost as if she became so starved for information at some point because her mind is wired such that no-one could ever provide her with enough no matter how hard they tried that it began to create information for her in order to keep her occupied.

    I would even take it so far as to be constantly playing audiobooks on subjects involving science, history and culture. A mind like hers will probably always be taking that information in no matter what else she might be doing at any given moment. I can see this eventually having a grounding effect.

    I know that information was the major grounding factor for myself. One thing I spent 70% of my time doing as a runaway was reading in public libraries all across the Western States. If I didn’t spend my time thus, I’m sure that I wouldn’t be alive today. There are several other factors involved in my surviving to the present, but information-gorging is probably chief among them.

  262. One more thought
    Along with the reading and audio books, as much time as humanly possible in the natural world surrounded by all that stuff that goes on there. Six years old is just old enough for hikes. There are some great hikes in the Santa Monica Mountains, for instance. Sorry about the repeated post earlier. I didn’t realize it was going through so I kept trying and trying.

  263. I live in Costa Rica and watched your story about Jani. I am glad to see that your story is being told, not only in the US, but in other countries where the treatment for Mi is even more challenging. I didn’t know if you were aware that Jani’s story was aired in other countries as well. I pray that children all over the world are treated with respect. I think that this is the most powerful message that we can learn from your story. I have a son with MI and live in a country where there are no schools that accommodate children with MI. His medication is unavailable within the country at times because of the governmental red tape. However, there are really great mental health specialists here but the insurance companies provide little to no coverage and most of the expense lies on the parents. I just wanted to thank you for telling your story.

  264. comments
    Some parts of Jani’s story reminds me of the book ..and i dont want to live this life, the story of nancy spungen,she had a lot of the same behaviors as jani and was diagnosed as a schizophrenic as a child.

  265. Your daughter can and will make it through this. I do not suffer from schitzophrenia but bipolar disorder and it has been a hard journey but everyday I am thankful for my mother who has helped me through my hardships . You guys are wonderful parents and I will pray for your daughter. much support!

  266. Your daughter can and will make it through this. I have bipolar disorder and somedays it is hard and somedays it is easy. All I know is that my mother and friends have supported me through my disorder. You guys are wonderful parents and I pray for your family.

  267. Jesus Saves
    After reading your story I realize that you have tried “everything” to help Jani. May I suggest one last resort? God. He should have been the first choice, but in our secular society God comes last. As loving parents, you have exhausted all possibilities, but please don’t disregard the role of prayer and spirituality in someone’s life. Perhaps you should seek the advice of a pastor who can lead your family on a spiritual journey. I must stress the following: I am not suggesting your daughter is possessed and that she must be exorcised. Not at all. What I am suggesting is that spirituality heals. And when God enters our life, all the darkness flees. The voices in Jani’s head telling her to do harm, will flee when God heals her. In order for that to happen, as a family, you must seek God. Find a church,seek help in the Hands of the Lord. He made Jani and I am confident He will heal her. Your family is in my prayers. Be blessed.

  268. I can not begin to imagine the pain and struggle you both have beared. To have gone through all this and still find happiness, you are truly remarkable. I wish the best for you and your family. I will pray the best for you all a thousand times over.

    Note from Michael: Thank you, Miguel. We are doing pretty well right now.

  269. new special?
    I keep seeing commercials(on discovery fit and health) for a special about your family and Jani’s story. Is this a new special or just a reairing of the original special from a few years ago?

    Note from Michael: This will be a new special, “Born Schizophrenic: Jani’s Next Chapter” which will air on Discovery Fit & Health June 3rd at 10pm EST/PST. It was shot in January, February, March of this year and is a follow-up the original “Born Schizophrenic” that first aired in 2010 (and will re-air before the follow-up, the same night at 9pm EST/PST).

  270. Jani’s Story Hits Home
    Hello… I first like to say that I am very proud of all that you have done and it I’m truly sorry to hear about your daughter and her disability. Sometimes life throws curveballs you just have to step up to the plate and swing away! Secondly I would like to tell you that your story has definitely hit home… my daughter kayla is 6 years old and she has quite a few mental disabilities of her own. At age 2 we put her to bed in about 10 o’clock and we went to bed about 1am yet something was keeping me awake and I couldn’t get to sleep. I heard a strange noise coming from her bedroom so I got up to investigate. Upon turning on the lightt, I found my daughter laying face up, having a seizure, asperating on her vomit. I did the heimlich, cleared her airway, and had to give recussitation breathes to get her breathing again. She was later diaagnnosed with epilepsy.
    As Kayla got a little older, we started to notice she was behind mentally. We’ve had doctor after doctor perform test after test, and they diagosed her with a mild form of autism and developmental delay. When she was about 3, we had her brother, Kody. She was fine until he started to crawl, then she started to get mean. She would hit,kick, call him names, and basically be mean to him. We didn’t know what to do so we wouldd constantly monitor them when they were together.
    Kayla’s neurologist was told about her behavior n he referred, us to a mental health facility and when we got into the back for her appointment. The phyciatrist was with Kayla for about 5 minutes and said she couldn’t perform the interview and had her admitted to Children’s Hospital iin Seattle to the inpatient psychiatric unit for observation. Sshe was there for 3 weeks and they diagnosed her with Obstructive Disipline Disorder, ADHD, Turrets, Autism, and Developemental Delay (even though she’s 6, she has the mentality of a 3 year old). They have her on about 6 different behavioral medications. Including concerta(a form of ritalin),, and guangacinne. As she’s gotten older, the turrets, abusive behavior and foul language has become worse. They increased her ritalin dose and aftter that, Kayla started having “schizophrenic” symptoms. We tried to take her back. To children’s hospital but they told us Kayla’s insurance wouldn’t authorize care for her and said even if they did, there were no beds avail. We have had CPS called on us because our daughter wwas saying sexually explicit phrases and Child Protection Services told us that we are being discriminated against because our daughter is disabled. I know this might not mean much to you, but I feel your pain and feel like I’m in your shoes. If you ever need anything, whether it’s someone to talk to, yell at, or anything at all, please feel free to give mme a call at 360-649-9375 or email me at harmodr210ncjr@yahoo.com and I will be glad to help as much as possible, even if it’s something as simple as needing someone to listen to you! I wish you the best of luck to you and yours and our thought go out to you- Del, Katrina, Kayla, and Kody Harmon

    Note from Michael: No, it means a lot, Del. If you are on Facebook we have a private support group for parents of special needs kids (both physical and mental and your daughter has both): https://www.facebook.com/groups/144622772289553/. We also have a private Yahoo support group: http://health.groups.yahoo.com/group/parental-support/. I know a lot of parents who have a child or children with both severe physical disabilities AND a mental illness. You are definitely not alone.

  271. A Possible Treatment/Cure?
    Have you considered looking into medical cannabis, by any chance? There are many cases of autism and other mental illnesses being treated with it. Please watch this with an open mind. The kids in these videos have also previously expressed violent and psychotic behavior, and this changed them. http://www.youtube.com/watch?v=BjhNU20a_4g http://www.youtube.com/watch?v=s6Svp81lPhQ

    Note from Michael: Well, I wouldn’t go so far to say marijuana is a “cure.” I don’t have any inherent problem with it but I don’t advocate its use for anyone who has schizophrenia and I’ll tell you why. First, it is illegal for children, even in states like California where medical marijuana is legal. But my bigger concern is cannabinol (CBN) is psychoactive and it also metabolized from THC. So I would be concerned giving any psycho-active hallucinagenic to someone who already is susceptible to hallucinations. Finally, marijuana is often taken by those which psychiatric illnesses as a form of “self-medicating” which can be dangerous as it can lead to further self medication through more hardcore street drugs like meth. I would never encourage anyone to self medicate. Now if a doctor prescribed cannabis, that is one thing, but I would not advocate its use with individuals suffering from psychosis.

  272. Your Story
    Dear Jani and family
    You’re in my thoughts and prayers. To the parents and Bodhi, you’re truly saints. It’s tough enough raising a child, but to have a child with such a horrible illness, I can’t imagine it. I know because of both of you, Jani will at least grow up knowing that she is a good person, that she is loved, that she is special not because of her illness but because she is Jani. What a true inspiration you are. You also made me realize how blessed I am having two healthy children (now adults). If you believe in God, He must have something very special in store for Jani.

  273. Hi!
    I am fascinated by Schizophrenia, partly because I think my great grandpa had it (he eventually committed suicide) and my husband’s Great Grandma clearly had undiagnosed Schizophrenia. My sister was institutionalized for depression as a teen (drug and suicidal tendendies), and both my sons had childhood PANDAS (my grandma also had Sydenham’s Chorea as a child). This condition can also manifest as Schizophrenia, but mostly it’s OCD and movements. Infection plays a role but the genetics are there first.
    Both my kids had similar movements and gestures as Jani but not the psychosis (although they had rituals, lots of them, like creating a ‘walk pattern’ down the hall that became so complex we finally carried our oldest son to his room for six months at age six. He also heard a radio sound in his head at age six but it lasted less than a year and there weren’t any auditory problems after that. We became concerned when he saw ghosts at night in his teens but that, too, was shortlived. He was diagnosed with a myriad of conditions from atypical Tourette Syndrome to OCD to bipolar, all before age seven. PANDAS was the final Dx. My youngest son became disturbed by the sounds of chewing to the point we could never have a sit down dinner with him during childhood. Our househld was not typical but we just never got too hung up about the boundaries of what was normal. I ended out homschooling my youngest son all the way through the educational system and some of the time for my oldest son.
    Both boys, now in their twenties, are mostly self sufficient although we help them out in many ways. I learned a lot from my oldest son (made out mistakes on him) about how to raise the younger one. To this day, minimizing complexity is the way to keep them stable. I do not try to navigate thelr lives very much toward more complexity (something that I think most parents tend to do). They both live together and we go over there once in awhile, make sure the bills and car insurance are paid etc (they usually aren’t), and stuff like that. As parents, we helped set them up in life by discovering their strengths (yes OCD can be helpful if it’s positively directed) but never pushed beyond areas where they began exhibiting signs of stress. In other words, become well aquainted with your child’s stress boundaries. Test them once in awhile but be VERY available when you do it.
    Even though they were cognitively capable of higher education, anything beyond the associate degrees they received would have pushed them over the edge. My oldest son will never be a computer programmer but his obsessive nature helped him get through Cisco and A+ certification. He makes a living although he does not aspire to climb any corporate ladder. That’s ok. We don’t push it. The younger son is a highly gifted musician. He teaches music lessons. Financially, we are not sure he will ever be entirely independent. That’s ok too. They are alive and we plan to keep it that way, even if people think we somehow ‘enable’ them to not be more independent by checking in on them often and staying strongly connected and life involved.
    Most importantly, as a parent trust your own instincts. Don’t let society dictate what is best for your child. Chances are, you know, in your heart, what’s best. And at least for us, the situation has improved with time. Our kids were high maintenance and it might remain that way for life but we have made peace with the possibility.
    Does anyone have any input on how to deal with a young adult who a history of childhood mental health problems and is very capable of reproduction? I’m very concerned about the hereditary compenent and whether such a stressor could push them over the edge. I know in my heart it would be a bad situation.

    Note from Michael: Well, we have a couple of private online support groups with parents of young adult/teenagers. The issue of sexual intercourse is obviously something that most of us try to stick our heads in the sand about. There is the natural tendency not to think about your kids sexually active and then just the day to day struggle to survive that prevents you from thinking about the future. If you are on Facebook, we have a private parents support group and not all of our members have young kids. You can find the link on the “resources” page on this site or at http://www.facebook.com/janisjourney.

    I completely agree with you about knowing the limits of what they can do. I am dealing with this with a parent friend right now. She wants her bipolar son to get an education, which I understand, but school is a major stressor. It’s not about settling. It is about improving quality of life by reducing stress on a child with a severe mental illness.

  274. In response to the comment on treatment using cannabis
    Some of the drugs developed for Schizophrenia are coincidentally (or not) antiproliferative. This is very significant because cannabis has actually been found to cause apoptosis (cell death) and is being researched as a treatment for certain cancers. Teens who use cannabis are at higher risk for Schizophrenia. It’s a double whammy because the brain naturally goes through brain pruning during adolescence and young people are adding insult to injury when smoking cannabis which is the equivalent of brain pruning via apoptosis. In other words, don’t let you teen or young adult kid smoke pot, especially if there is any bipolar, adhd, or Schizophrenia in the family.

    Additionally, I have done a lot of personal research on the causes of mental health problems and their involved genes etc. In doing so, I have also corresponded with researchers studying the same subject. Something that has captured my attention is that Schizophrenics and some of their relatives have a lowered risk of cancer (except possibly colon cancer). http://www.ncbi.nlm.nih.gov/pubmed/22522642
    I am particularly curious about what types of cancers, if any, Schizophrenic families develop. Some cancers are caused by genes that are not very effective at putting the brakes on growth. Other cancer genes such as xeroderma pigmentosum are caused by an inability of DNA to repair itself. In other words, I am wondering if the involvement of anti-proliferative genes(22q11.2 deletion syndrome? which can cause Schizophrenia for example) are a clue about how we can treat Schizophrenia? I wonder if Schizophrenic families have a higher incidence of specific cancers (DNA repair genes for example) but a lower rate of specific proliferative cancer genes? Because cancer has different genetic causes, the focus should be on studying the relationship between select cancer genes (genes that don’t put the brakes on growth) and Schizophrenia. If we find this association, we might find a cure for both cancer and Schizophrenia. The answer is somewhere in there and I am willing to bet that select cancer genes are protective against Schizophrenia.
    In the meantime, until we know more, keep pot away from all kids, but especially those who are at high risk for mental health problems.

    Note from Michael: Fascinating. Thank you for sharing. Jani’s DNA was mapped by Duke University but they haven’t had the funds to sequence me and Susan to compare for deletion sequences. Please keep us up to date on your research. You can email me directly at michaeljohnschofield@me.com

  275. Hang in there….
    I watched the new special last night and just finished reading through all these postings…you’re doing the best you can with the situation, and just taking things one day at a time.

    2 of my 4 kids have had mental/emotional issues. My darling daughter Erika had depression and I believe she was bipolar, but she agreed with her dad that counseling and doctors were a bunch of hooey. When she was 22 she discovered self medication in a syringe and I lost her to a heroin overdose at the age of 24 in April 2007.

    My youngest is 21, has a violent temper and a diagnosis of oppositional defiant disorder…he quit going to school in 4th grade, has been in and out of alternative programs, and feels the same way that his dad and sister did about counseling. I had him into the ER several times as a child and after being evaluated it was always ‘we’ll do a contract and he’ll be fine’ but it wasn’t. I believe he is bipolar as well–I am a nurse and have cared for a lot of bipolar patients and also have a brother who is bipolar. He smokes marijuana because it helps ‘even him out’, but he refuses to look into medication because he doesn’t like meds!!

    Both of these kids were the sweetest, most loving children. My son can be loving and helpful, but then he turns around and is a totally different person. I worry that I’ll get a phone call about him too, and I don’t know how I would bear that. My current husband is a wonderful support and that makes a big difference, but when a child becomes an adult it’s a lot harder to get them help.

    Thanks for what you’re doing. God bless you and your family.

    Note from Michael: Becky, I am so sorry about your daughter. She is indeed a casualty of untreated mental illness. I too constantly stress not self medicating. I know adults who do it and it scares me. If you are on Facebook and would be willing, we would love to have you in our private online support group. I think it might be mutually beneficial. Not all members have young children and even those of us who do have a lot to learn from you. https://www.facebook.com/groups/144622772289553/. I would also love for you to come on http://www.facebook.com/janifoundation and talk about the dangers of self-medication if you are willing.

    Given the situation with your son, you might need some support yourself.


  276. I couldn’t agree more. Jani is, and always will be, one of the world’s most special people. The whole time I was reading this, I couldn’t help but think that she’ll save the world some day. She has the strength and will to do it.
    Starting now, I will pray for Jani, her family, and everyone else who is trying to help her every night for the rest of my life.

    Good luck to you and God bless you!

  277. i just watched the 2nd special on jani & the rest of your family & im very glad to see that things are getting better in most all of the areas of your lives! U have navigated your family thru uncharterd waters but seem to be coming thru it all as a loving family. i am so very happy to see both bohdi & jani are living together as loving siblings against all odds. this is possible only because of the love of both of their parents thru both good times and tough ones. jani and bohdi were givin to you both because someone with greater wisdom then ours knew that you both would be there to guide them thru all the challenges life will throw at them. while im sure there have been times when you have both wondered how you would make it thru the next hour, somehow you
    have made it and givin these kids the best you have to give! all my prayers are with your family!

  278. Sending you good thoughts
    I have watched Jani’s specials on television and I am amazed at the wonderful job you are both doing. What a great and loving family Jani and Bodhi have! Stay strong! Perhaps someday we will figure out what happen’s in the mind of psychotic children (and adults). Until then you have my admiration and awe. What a great job you are doing in a tough situation.

  279. Dear God your story breaks my heart- i just watched it on TLC. My best friend’s daughter is 15 and has been mentally ill at least since the age of six. She has been given many diagnosis’s and many many medications – mostly to no avail. My friend has been investigated by family services twice and the case dropped both times but there is really no help for this. I’ve watched my friend fall apart over and over again because she cant fix this. I find your family quite amazing. God bless you!

    Note from Michael: If your friend is interested we do have two private online support groups, one on Yahoo and the other on Facebook. Both can be found on the “Resources” page of the website.

  280. I am a parent of a child with Tourettes Syndrome. I was very moved when hearing of the difficulties you went through to find help. I hit that same wall so many times. One day I realized that I will be the only champion my son has, and that’s okay. I will continue to fight for his well-being no matter what our society throws at him. It has given us a closer bond than I ever thought we would have. I hope that you and your wife continue to rely on each other, because in all reality, it’s going to be you against the world for her sake, and you know what, no one can be better for her than you.

    Note from Michael: Hi Cindy. We have two completely private and closed support groups for parents of special needs kids: one on Facebook: https://www.facebook.com/groups/144622772289553/ and one on Yahoo: http://health.groups.yahoo.com/group/parental-support/

  281. I hope this hasn’t been asked before…there is sooooo many comments to look through….so l will ask. Have the kids been vaccinated? My son was diagnosed with ADHD, OCD, and ODD and I believe that it was a result of his 12 month MMR shot. He changed dramatically within days of that vaccine. I just can’t help wonder if this is vaccine related.

    Note from Michael: Yes, Jani was vaccinated, although her MMR was spread out into three shots. I understand your feeling but there is no science to suggest any link. I teach rhetoric and one of the things we teach is what is called the “error of cause and effect.” Basically, if event B follows event A, it is natural to assume that event A CAUSED event B, when in fact we have no proof of that. Just because something comes before does not mean it caused the following event. It could be simple coincidence that your son developed symptoms after the MMR. You have no way of knowing whether those symptoms would have arisen without the vaccination.

  282. Thank you for sharing Jani’s story
    Being the child of a mother with schizophrenia, it’s often hard for me to watch shows about the disease. Often it brings up the anger and frustration I felt as a child, living w/a mentally ill mother who lost the ability to parent around the time I was 8, (she began needing hospitalization at that time, which was her late 20’s, but I think she had symptoms earlier in life).

    My parents are Greek immigrants, and Greece at that time, (and even today) is still somewhat backward when it comes to mental illness). It’s still considered something to be ashamed of, although if you go to any pharmacy in Athens, Risperdal is almost always prominently displayed. (Pharmacists in Greece can prescribe medications themselves over the counter). It’s been my thought that mental illness in Greece is very high because of it being a small country and the gene pool remains small but that’s just my private guess.

    Anyway, I wanted to say that I admire the fact that you and your wife have maintained your marriage through the struggles w/Jani’s illness, and if I understood the TLC special correctly, Bodhi’s autism.

    People that don’t know me well have wondered why an attractive 40 year old woman never married and had kids. I’ve lived w/feeling ashamed over having a mentally ill mother for most of my life. It’s something that caused me to keep men at arm’s length, both because I worried about being shunned as a potential partner for it, and also because having seen schizophrenia and it’s effects on a family, I’ve been terrified of potentially passing it on to any children. My younger sister is married, but has no children yet, and I know it weighs on her and her husbands minds as well. Both my sister and I have suffered with depression and anxiety for most of our lives. No symptoms of any other mental illness. I know Jani’s situation is different, but I think my mother’s illness was triggered by a combination of genetic and environmental factors. I think she probably always had tendencies and symptoms, but leaving her homeland to live another country, (the U.S), with my father at a young age, leaving her family, not speaking the language, etc, etc, had some effect on the diseases expression. My father did not handle her disease well, being Greek himself and not having much knowledge of mental illness. He was not supportive of me when I was a child living w/a mother who was having psychotic episodes, convinced that she was being spied on by people living in the vents of our home. Like many schizophrenics, she would fly into rages, and I think there were plenty of time I was probably not safe to be alone w/her. As often happens w/adult onset schizophrenia, the delusions got less frequent as she began to age, and at this point in her life, (she’s in her early 60’s) she functions more less fairly normally, but has never been able to hold a job, and is on social security.

    Anyway, I know you mentioned that both you and your wife have schizophrenia in your family backgrounds. I think if I had met someone who also shared some of my experiences of having had parents w/mental illness, it would have been good for me. Seeing what you and your wife have dealt with and yet not giving up brought tears to my eyes. As I’m sure you know, Generation X is not known for sticking through with things when the going gets tough. We were raised in a time where our culture tends to tell you that if things get rough – bail. I see it in the relationships and marriages of my peers who don’t even have the kinds of challenges that you guys have. But you guys have hung in there, and refuse to give up on your child and your marriage. Your patience w/Jani is very moving and inspirational. It’s reminded me that I need to keep moving in my own life and face my own challenges with a better attitude. I hope Jani is doing well today.

    I wanted to add the same recommendation another poster mentioned above, about the book And I Don’t Want To Live This Life. I truly believe Nancy Spungen was a child w/schizophrenia as well.

    Note from Michael: Thank you for sharing your story. The genetic fears are interesting. My mother was also, I believe now, probably schizophrenic (she became more erratic and paranoid as she got closer to forty). It haunted me and maybe I would not have had kids had Jani not been an “accident.” But do I regret having her? Absolutely not, but I understand your fear. This is another comment that would be a great blog post in future.

  283. Thank you so much for sharing your story. I have been a single mom for years, and I have a son who has autism. I am not so convinced that sums up everything, but that and bi-polar and ADHD are his diagnoses. His father was never in the picture and he has an older sister who is also bi-polar and had violent tendencies. (I understand driving down the freeway and having her grab the wheel or do other dangerous things}. My son has always been very violent, and I hate to say it, to the point of being homicidal. There have been times when I feared for my life. After an episode he will dissolve into tears and sob and ask why he can’t just be a normal boy. It is heartwrenching. I did not recieve the diagnosis of autism until a year ago. (he is 13 now). It doesn’t change the day to day struggles, but it did help explain why his mental age is so much younger than his physical age, although like your Jani he is brilliant in sciency stuff :P. I am rambling here, but your story has let me know that there are others out there who are suffering like this. I love my son, but especially raising him and my other children alone with no help at all, I have gotten the looks in the stores, had someone come up to me in a parking lot when he was in a state and actually offered to get a switch of the bush and whoop the devil out of him. All I know to do is love him, because no one else does 🙁 I will be thinking of you and your precious family and will be praying for your continued strength and wisdom in dealing with your little ones.

    Note from Michael: Dee, please come into one or both of our completely private member only online support groups. That is always my reaction when I read “I thought we were alone” or the feeling thereof. In both groups you will find parents dealing the same issues (and yes, I do mean having a child with homicidal thoughts) and no judgment. The issue is how do we help, not judging. We’ve got amazing parents like you struggling through incredible situations. If you are on Facebook you can contact me via http://www.facebook.com/janifoundation and I will refer you into our private facebook group (because it is secret you won’t be able to see it unless you friend myself or another Jani Foundation mod. We also have a Yahoo group: http://health.groups.yahoo.com/group/parental-support/

  284. wow
    My God you and your wife are beautiful souls. Your deep love for your children is an inspiration to all parents. Jani and Bodhi are very fortunate. I’m grateful to you for sharing your story.

  285. I recently watched your show on TLC, read your entire website, and did some research about Jani’s illness on the internet. I’m in awe. I have two daughters that are pre teen and after reading about Jani, I sat back and remembered the days my husband and I brought them home for the first time. You are right, you dont think about mental illness, but you “dream” about all the things that they will do, and who they will be. Your daughter’s story really touches my heart because I remember when our girls went through the “imaginary friend” stage. For them it was stage, for your daughter its not. Then it makes me think about the world. What are all of the events that have lead humans to evolve so that someone could have such a mental illness of this calibur at such a young age. Our environmental factors over several generations-water, food,nature, technology, and drugs have surely done its toll. But that is in the past. Its not only Jani but an increasing number of diagnosis of mental illnesses and various other illnesses are on the rise. All we can do is try and look to the future. Always looking forward but learning from the past.
    I praise you and your family, supporters as well for your continued effort in raising Jani near you and not put away for someone else to handle. Makes me think of Helen Keller and her struggle.
    Please keep the world up to date on Jani, she truly is a special little girl.

  286. God Bless you both
    I watched your special the other night and I broke down in tears. To see such a lovely child having all these issues my emotions took over me. My son was diagnosed with autism when he was 3 and it was a challenge, I was lucky that he is able to attend college on his own, but he does have his days where I worry. I like yourselves, my son is my life and he can live with me forever. I worry sometimes about the future but for now I take things day by day.

    I bless you both for your courage and love. May God bless you both with both your children, and that they may live a happy life, and I am sure that with your love they will.

    Note from Michael: Thank you, Maria. It is great to hear how well your son is doing.

  287. An inspiration to us all!
    I watched the special on TLC last night. The dedication and determination Michael and Susan have demonstrated is amazing. I am in awe of them. They are super-hero’s if they do exist! The amount of love they have for their children and for each other is obvious. I will continue to follow Jani’s journey and pray that she will live a long and happy life. God bless you all!

  288. Hi. I am completely fascinated by Jani & Bhodi’s story. I feel like I can relate on some small level because I’m pretty confident that my 2 year old son has Asperger’s although not diagnosed, yet. Seems there are so many similar symptoms and behaviors that link Autism with Schizophrenia although I am by no means saying they are the same. Just somewhere down the line it seems that they are linked some how.
    I seen where Bhodi started going down the same path that Jani is on I was wondering if you seen symptoms or red flags as early as you seen them in Jani? Could you say that Schizophrenia is somewhat a spectrum disorder and no 2 situations are the exact same.. as with Autism?
    Thanks for sharing your family’s story with the world. Being able to relate to others makes a world of difference. I hope to learn more in the future about how Bhodi is getting along as well.

    Note from Michael: Officially, schizophrenia is not on the autism spectrum, but we must keep in mind that neither autism nor schizophrenia is precisely defined. The primary difference is the consistent and ongoing presence of hallucinations, lasting for at least six months, that is the defining element of schizophrenia. I wouldn’t go so far as to say Bodhi is “going down the same road.” There are many differences. First, Bodhi slept as an infant. Jani did not. Bodhi was speech delayed while Jani was speaking in grammatically correct sentences by 18 months old. Bodhi will sometimes respond with fear to something we can’t see, but that doesn’t necessarily mean he is “seeing” something that isn’t there. It is difficult to know because Bodhi is not as verbal as Jani was. Jani’s behavior was very different. She became anti-social and clearly enunciated a difference between her and other kids. Bodhi, however, doesn’t fit the traditional autism model either. He shows interest in other kids (although he doesn’t play with them he knows their names) and he cant be overstimulated. Bodhi was four and Jani was very different at four. But pinning down a diagnosis is extremely difficult because both autism and schizophrenia and other mental illnesses really present differently in different people. No two people will have exactly the same symptoms. So ultimately it comes down to symptoms, not diagnosis. You treat the symptoms. If you suspect your child may have Asperger’s, does your state have a regional center that will evaluate for Autistic spectrum disorders? If he has Asperger’s, the key will be early intervention through child development and occupational therapies, which in California is provided by the Regional Centers. You can email me for more information at michaeljohnschofield@me.com or at http://www.facebook.com/janifoundation and let me know what state you are in and I can see what I can find.

  289. I need help
    I need help and information please live in the country of gautemala and I think my son Demian has something different because it has a good imagination but his mood changes easily, at school say I can not tolerate their behavior I have done everything psychologists, help profecional but I say they are behavior problems but do not think it so … please help me not to do and here in Guatemala there is not much information or professionals.
    I hope you understand me
    thanks

    Note from Michael: Please email me at michaeljohnschofield@me.com. I have to be honest, though. I am not sure what I can d as I have no contacts in your country and I don’t know about the mental health situation there. You do bring up a critical problem which is how to get help in a developing country. It is hard enough in the US. I can only imagine it is a nightmare in Gautamala. But email me and I will see what I can do. Are you on Facebook? If so go to http://www.facebook.com/janifoundation.

  290. Inspirational
    Your daughter is absolutely lovely. I’ve only just found about her tonight, but it’s already made me cry more times than I can remember. The fact that you and your family have stayed strong through all of this is amazing. Jani is lucky to have you and your wife there for her. I wish you all the best in the up and coming years x

  291. While you are concerned that J may not survive, I have a good feeling after watching several shows and have following her progress. Her intelligence and your careful development
    Of her skills and adls make me think that eventually with therapy, structure and love she will make it. She will have to struggle with not only her illness but with the secondary gain of this illness. Sometimes the latter can be as much of a problem as the illness itself. However with years of preserverence her intelligence will win out and a beautiful butterfly will emerge from her hell and we will have a book from her.

    Note from Michael: If she can tell her own story then I have done my job:)

  292. thank you
    I have been following your story since it appeared on Oprah and it is fascinating. You and your wife are the best parents I have ever seen, What you are doing is amazing for those born with mental illness. I was diagnosed with major depressive disorder in high school. I had a rough time growing up with rages and being moody, a family that thought I was a mean kid. My parents didn’t understand. Sometimes I think that my siblings still hold a grudge against me for the way I treated them as a child. I am happy today and feel in control of my life thanks to medication. People don’t realize just because you seem normal doesn’t mean that you don’t struggle with internal issues. I was always scared to have kids because of my moods I didn’t trust myself and I didn’t want kids to have to deal with what I had to deal with. But what you said is right the world needs all different types of people. I hope that you guys continue to have major breakthroughs. Your daughter is amazing.

  293. This is a beautiful story; captivating. I think that my son is extremely intelligent (he is 4 years old), but he has always been labeled a “brat” and that I am not doing my job by disciplining him more. Trust me, I HAVE tried. He does not respond to harsh discipline, in fact it is almost as if his negative behavior feeds more off of it rather than corrected by it. It is a relief to hear your story; to know that I am not alone as a parent of a child who is perhaps misunderstood. Thank you, thank you, for your courageousness by telling Jani’s story. My best regards to you and your family.

    Note from Michael: If you are on Facebook we have a private online support group for parents like yourself. Come to http://www.facebook.com/janifoundation.

  294. To Susan and Michael,
    Your story sounds much like mine although much, so much more severe. My Kya was born and things were unusual with her from the beginning. She’s been diagnosed with night terrors which was a good place for us to start but not quite right. It wasn’t just at night that she would scream. It was all day and all night long. She would only sleep maybe 1-2 hours cat a time on a good day. And she wouldn’t stop moving or going or being inquisitive with bizarre unique questions that children of her age shouldn’t ask or know to ask. And she’s beautiful. Inside and out. But her mind is completely consumedby things we can’t see nor understand. She names things we know nothing of. She sees things we cannot. And she can snap and be almost blacked out with rage over things others around her can’t be. She’s unique. And your story has given me hope that i won’t lose her. She’s not on medications. She’s never been in a “psych” ward but she’s different and we know it. I I will pray that miss January and brohdi become successful. It’s hard to not beat ourselves up for what our children are but you both have worked so hard to give them both a shot, moreso than others who never experience trials of raising difficult children. God bless your family and your journey. Thank you for posting your story.
    Sincerely , Veronica b.

  295. I thought I was alone
    Hello
    I just wanted to say how inspiring and courageous this story is. I’m 15 years old now, but have had mental health problems since the age of about six. It started with anxiety that took up most of my life; having reoccurring bad thoughts and irrational fear. I started hearing voices soon after. I thought it was God talking to me at first, then I started being completely paranoid that I was going to be beheaded and go to hell. I’d have nightmares every night. It sounds weird now, but as you put it, it is what psychosis does. I also had “imaginary friends”. I remember sitting up in bed watching two snakes talking to each other and I could’ve sworn that they were real. I told my parents but they weren’t very understanding (they didn’t want me “going down the psychiatric route”). Like Jani I see numbers sometimes, but mostly colours and shadows. All of this kept happening until I was 14 and became severely depressed and they took me to a doctor who also didn’t listen. It’s the most frustrating thing when “professionals” don’t even listen to people. After I ran away from school and started becoming really agitated and withdrawn they listened and diagnosed me with OCD, depression and psychosis nos.

    One of my “imaginary friends” (delusions) was Fang who I described as an inter dimensional demon from the ninth universe. He used to give me urges and told me to hit/scratch people or it would be this ongoing “hit, hit, hit” in my head. Sort of fits with the OCD too.

    I always thought I was alone and now I want others to understand and see that these problems are real. All I really wanted was to meet someone like myself, who wouldn’t think I was “weird” and delusional because I never really fit in anywhere. Sorry for rambling, I hope it wasn’t annoying. I wish you and your family the best. You really are great parents.

  296. I thought I was alone.
    Hello
    I tried to comment yesterday but I think I used the wrong email address, sorry.
    I just wanted to say how inspiring and courageous your family is. I’m 15 years old but all of my mental health problems started when I was about six or seven. I hope you won’t mind me writing them here, it’s just no one else seems to listen and it’s reassuring to know that others understand.

    Everything started when I was about six years old and I started becoming really anxious and scared. I had this voice in my head that would constantly repeat things over and over again so much that I would feel like screaming or pulling out my hair. I tried to hide all of it but I told my parents I was hearing voices. They weren’t that supportive, I think they didn’t want to think about it (they said they didn’t want me “going down the psychiatry route”) and waited to see what happened. From then on I never mentioned anything like that again. I remember being completely terrified and have (what I now see as) irrational beliefs/fears that wouldn’t go away, like being constantly terrified of going to hell or being beheaded or something else. It sounds weird now but when it gets bad nothing reassures me and logic doesn’t help.

    I remember seeing snakes talking to each other in my bedroom talking about killing me. I could’ve sworn they were real but I told my parents and they thought I was dreaming. I know I wasn’t. I’ve always seen colours, shapes, shadows, numbers, figures etc, and I thought I had special psychic powers. I had “imaginary friends” like Jani. One was Fang who I described as an inter-dimensional demon from the ninth universe (I didn’t really talk like an “average seven year old”) who was always with me and was bad 80% of the time (he screamed at me to hit or hurt people or he wouldn’t go away or he’d keep telling me horrible things). I had some good ones, like a dog called Nine and a grey cat named Queen’s Knight who was like a protector. There were also birds that tried to peck out my eyes and this screaming girl on my stairs from the 20’s. I got taken to a doctor who ALSO dismissed everything I said and told me that I’d grow out of it. It’s the most frustrating thing to hear. School failed me as well when I apparently ran away from school and had a breakdown in the middle of class and I can’t remember much of it like it’s fuzzy and distant. They punished me for it and I didn’t really understand what I did wrong. The doctor then listened to me and diagnosed me with OCD, anxiety, depression and psychosis nos.

    It’s awful that serious things have to happen before something is done. It’s like the James Holmes case. It is a terrible tragedy what happened but the man was so obviously mentally ill and out of it…he didn’t even know why he was in the court room! If only people were supportive of people with mental illnesses and less ignorant then we could prevent more horrific tragedies like this.

    People usually tell me that they don’t think I’m mentally ill because “I don’t talk like the average teenager” and I’m ‘smart’. Mental illness doesn’t mean mental retardation…I can think logically when I’m not in my episodes. In those I don’t remember much and everything seems real that isn’t.

    I’ve ordered your book and look forward to reading it. I hope your family is well and I wish you all the best. Thanks for reading (and sorry if this was too long).

    Note from Michael: Not at all. Thank you for sharing. I would really like to get you into a Facebook group with some other young people who would understand exactly what you are going through/been through because they have/are to. However, since you are under 18 the admins (of which I am one), would need a parent to approve your membership. My email is michaeljohnschofield@me.com and you can come to http://www.facebook.com/janifoundation, which is our general Facebook page. I am going to see what teen resources I know people plugged in to.

  297. Mental Health Practitioner
    I would like to know what happened to the other blog that you posted describing in more detail Jani’s earlier years. I’m actually a therapist and I question the etilogy as well as the accuracy of this diagnosis as the majority of her “behaviors” stem from the nature of autism. I’ve worked as a behavior analyst with autistic children and they are self injurious and violent. There are many words from your blog circulating around on the internet. Could you please clarify these for me? quote from father’s blog which was taken down…. “The more violent the world around her becomes, the calmer she gets. Because it is stimulation. This was even true of her behavior in the face of my violence. She grew calm, even mature, telling me “Daddy, it’s okay. You need to calm down” when I would throw objects across the room and put holes in drywall.” “We tried everything. Positive reinforcement. Negative reinforcement. Hitting her back (I won’t tell you how many people told us that all she needed was a good beating). We took all her toys away. We gave her toys away. We tried starving h
    er. We did EVERYTHING we could to try and break her. Nothing worked.”
    “The violence became so bad that at times Susan and I both lost it and hit Jani as hard as we could. We hit in impotent rage.
    We got a referral to a psychiatrist.
    Two months later, Janni was hospitalized for the first of what has since been four times, but in truth will be many more times.
    Today, Jani is no longer a brat. Today, Jani is schizophrenic.”

    Note from Michael: The old blog was located at http://www.januaryfirst.org. It was on an Apple MobileMe server. On June 30th, Apple discontinued MobileMe in favor the iCloud. I obviously saved all those old blogs before MobileMe went down. There are just so many of them I have not had a chance to add them there (I couldn’t just import them from MobileMe to this site, which is Joomla).

    I don’t remember writing this: “The more violent the world around her becomes, the calmer she gets. Because it is stimulation. This was even true of her behavior in the face of my violence. She grew calm, even mature, telling me “Daddy, it’s okay. You need to calm down” when I would throw objects across the room and put holes in drywall.” That being said, it is entirely possible I did write something like that. I don’t remember everything I said. At any length, maybe once or twice I did something like that, throwing objects. It was not consistent.

    This…”We tried everything. Positive reinforcement. Negative reinforcement. Hitting her back (I won’t tell you how many people told us that all she needed was a good beating). We took all her toys away. We gave her toys away. We tried starving h
    er. We did EVERYTHING we could to try and break her. Nothing worked.”
    “The violence became so bad that at times Susan and I both lost it and hit Jani as hard as we could. We hit in impotent rage.
    We got a referral to a psychiatrist.
    Two months later, Janni was hospitalized for the first of what has since been four times, but in truth will be many more times.
    Today, Jani is no longer a brat. Today, Jani is schizophrenic.”… is from the “About Me” on the old blog. I was writing with those in mind who thought then that we didn’t discipline Jani enough. I have explained this before ad nauseum. We didn’t literally “starve her.” I would think that would be pretty noticeable since Jani was seeing mandated reporters all the time and has no problem speaking up. Jani would refuse to eat anything other than very specific foods. I used to make two dinners: one for us and one for Jani. Loma Linda (the second hospital Jani was in) believed her issues were entirely behavioral and we just needed to “get tougher” with her that meant if she didn’t eat what we served for dinner, she shouldn’t get what she wanted. We were told “When she gets hungry enough, she’ll eat.” Well, she didn’t. That is psychosis for you. Logic has no bearing.

    “Hit her as hard as we could” is me being overdramatic. I have never believed in corporal punishment but after days and days and days of getting hit once we (on separate occasions) hit back, spanking her on the knee. We felt awful (and again it didn’t make anything better). If I had truly hit Jani as hard as I could, again that would be noticed (because she would have been seriously injured or killed). There were always teachers and doctors and therapists. It would hard to hide something like that.

  298. You guys are truly great parents, it’s very clear that everything you do is out of love. Thankyou for sharing your story, jani is an inspiration and the world is a better place for having her in it. All the very best for the future.

  299. i would just like to thank you for your story…. much like you, my son who is now 17, was diagnosed with childhood schizophrenia, there stories are so similar i felt like i was reading about my own child…it’s very much terribly sad, and nice to know we are not alone…. you and your beautiful family our in my prayers….

    Note from Michael: Thank you. Are you aware of our private online support groups for parents such as yourself? We have two, one on Yahoo and one on Facebook: https://www.facebook.com/groups/144622772289553/ and http://health.groups.yahoo.com/group/parental-support/. There are many other families with kids about the age of your son. 17 scares me. Do you have conservatorship for when he turns 18?

  300. Your story is similar to ours, only we found the cause
    I heard about your family from one of the homeschooling boards. Our story is similar to yours only with a much happier ending. I urge you to look into Orthomolecular medicine, your daughters story screams I have Pyroluria or a similar related condition. None of our Dr’s had heard of it when I found it online, its a simple urine test to detect, the hard part is making sure the sample is collected, frozen and shipped correctly. The best article I have found on the condition is at http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder this condition is real, I have seen healing first hand in myself and my children as well as other family members. I trusted our Dr’s to heal our family, they failed us after years of drugs that don’t work and I started looking at other options. We no longer deal with the hell that was our lives.

  301. Research and relating to mental illness
    I wanted to tell you and your wife how much I look up to you. It takes incredibly strong people do work through the struggles of having a daughter with early onset schizophrenia. I am a psychology major at Kutztown University in Pennsylvania and decided to write a research paper on this psychological disorder and most specifically, your daughter. She is truly beautiful and intelligent in ways that far exceed what the normal passing stranger could ever comprehend. Someday I hope to be an art therapist to help children like January and also children with autism and anxiety disorders. I believe that everyone has their own struggles that they must over come in life and as parents you have accomplished so much. My father suffers from bipolar, so I do know how stressful it can be on a family with disorders that many people do not fully understand. Just always remember, you are never alone and there are people out there, like myself, that look up to you!! Best of luck and keep your heads up!

    –Jennifer Hershey

    Note from Michael: Thank you. If we can be of any assistance in your project please email me at michaeljohnschofield@me.com

  302. It breaks my heart to see innocent babies suffer like this. Jani is such a pretty kid. I wish that she gets better soon. It is a great news that she loves cooking. But i was just wondering..is she interested in [u]dance[/u]? that will help her channelize her energy and the grace of the art might even keep her fascinated.

    How is Bodhi doing?

    My partner is a schizophrenic and has a family history too (He has a 143 IQ). So there is a high risk when we become parents. But your life gives me the courage to go on!

    Looking forward to you and Susan living happily with both of your kids in the same apartment. Some day your girl is gonna rule the world and will tell her story!….LOVE

    Note from Michael: She likes to dance a bit but dance classes have never really worked because Jani likes to do her own thing.

  303. GOOD LUCK GUYS!
    My sister is has C.P. and its been very hard on our family. to grow up with a crippled sister is very hard, but AWESOME at the same time! I know that you have it the hardest and the worst kind of problem I kid can have. my point is I can relate living with a family member who has a problem and its tough, but I swear sometimes family with whatever kind of problem they may have makes them such a loving, caring, and fun person!! stay strong Michael! you and susan are awesome and very, very strong!

  304. I want to slap you. why in the WORLD are you whoring out your daughter for attention? you treat her like she’s a monster. You are the monster. how has child services not come running up to your doorstep to save your poor children from you? and even though you knew January probably wouldn’t react very well to having a sibling, you went ahead with it. You and your wife definitly do not deserve any awards for parenting.

  305. Praying
    I believe you are doing the right thing for your children. I admire you both very much. Struggling with mental illness is no easy thing, god bless you both for sticking by Jani and trying to help her instead of giving up on her.

  306. Hi Michael:

    My father suffered from schizophrenia as well as my uncle. I have decided to become a pediatric psyciatric nurse practitioner. I have also researched alternatives in addition to pschiatric meds. Homeopathy has my attention. You may be interested in finding someone who specializes in mental illness and homeopathy. It will not hurt your precious little girl and is worth a try. In addition for you son with autism. My heart and prayers go out to you and your wife. I would gladly refer you to an experienced practitioner only if you have interest. I send pray that god continues to give you and your wife the strength to take care of your beautiful children.

  307. Alternative therapies?
    I have a question for you Michael, and I know you’ve explored every avenue possible for your daughter. What do you think about solutions such as homeopathy/eastern medicine and not just medical but therapies that can help your daughter cope more with the disease? I don’t mean behavioral either. I mean just overall learning to cope. I’ve heard a criticism of psychiatry, that instead of addressing the core issue it mostly has evolved to coming up with medicines that will inhibit, or block the symptoms instead of addressing the issue at it’s core. I’ve heard this to describe western medicine overall. From a religious perspective, it is my understanding the religion of Scientology employs a minimal medicine/heavy therapy approach but I wouldn’t be able to say if their methods are effective or not. I would like to hear you thoughts on this.

    My brother was eventually diagnosed with schizophrenia as well, he was about 10 when the first symptoms started and it was many, many years before we were able to find medicine where it struck the right balance and he seemed to be my brother again. I can certainly appreciate your frustration with the industry overall; while what your daughter has is indeed rare, I would say even with more researched illnesses it seems like they are diagnosed with a healthy mix of analysis, guesstimations, and simply what the therapist chooses to believe. It’s tough for a family to go through that when seeking help.

    Note from Michael: I am completely opposed to Scientology. Their basis for hating psychiatry is all because L. Ron Hubbard presented his beliefs to the APA in the early 1950s and when they questioned him on evidence he got all pissy and left (because he had no evidence). There is no data to support that homeopathic or Eastern techniques are more effective. In fact, data suggests they are less effective. Western medicine is not perfect but it is the best option we have. I am not opposed to alternative therapies in ADDITION TO medication but I would never EVER suggest them as a replacement.

  308. I read the book “This Stranger, My Son” in high school:
    http://www.amazon.com/This-Stranger-Son-Louise-Wilson/dp/0451087291/ref=sr_1_8?s=books&ie=UTF8&qid=1355691828&sr=1-8

    Unfortunately it sounds like not much has improved for families in all these years. I was also struck at how the screaming/not sleeping was also the first indication of problems in her son’s case. I wonder if “schizophrenia” at such a young age relates to a neurologic problem that leads to the inability to have normal REM sleep. Someone sleeping for such brief intervals wouldn’t get much REM and might get hypnogogic hallucinations from REM deprivation. Adult schizophrenics usually don’t have such vivid visual hallucinations (people with drug/alcohol toxicity/withdrawal do). Hallucinations are in adult schizophrenics are primarily auditory, with the visual stuff relating to seeing something real and misinterpreting it due to delusions rather than seeing something that isn’t there at all.

  309. I am not only moved by your story, but also by your photos. The love I see in your family’s eyes despite the hardships you have faced is something that is truly remarkable. Please know that your lives are changing the course of how many people look at mental illness.

  310. Jani
    Hi I’ve watched the videos and read this blog and followed your media story about your family and Jani.
    I hope she is as ‘well’ as she can be and your family is satisfied/content with each of your days spent together. Jani is quite the beautiful, bright child.

  311. it is due to you that she survives to make a difference
    when i first read about Jani, a few years ago, her story frightened me. now i am able to be informed by it. i believe that no human being can survive long in complete isolation but this is more problematic for some of us than for others. the greatest tragedy for children like Jani is that frequently there is no person willing or capable to brace them against the universe. what you are doing (and i am sure you know this but it never hurts to be reminded) is making certain that fewer of us slip through the cracks. i cannot pray to any of the gods favored here but i wish all the strength you’ll ever need for you and your family, and that your potential may blossom to its fullest.

    you’ve said that your hope is that Jani survive, perhaps to tell her own story. i see myself in your photographs of your daughter (the laughter and the tired eyes!) and although my parents were unable to help me, i am 36 now thanks to someone who could, and i never expected to live this long. i can’t imagine a more difficult thing for him or for you to have to do, to be another person’s life force as well as your own.

    i will be saving up to buy your book (and also look into Clorazil, as nothing else has worked for me either, and i am not receiving any medical help for this at present.)

    thank you for what you have done so far.

    Note from Michael: If I can help in any way, please email me at michaeljohnschofield@me.com. I don’t know if you are on Facebook but we have a great private support group for adults with MI. People taking day by day, just like you.

  312. just wondering if you ever thought of giving her lsd? maybe the hallucinations would help her on a different level we could imagine. i hope you’re not offended by this, but apparently lsd has helped kids with autism before.

    also, i was wondering, if you ever thought of playing along with her hallucinations. like 400 the cat, you could say, “oh 400 is back… wow he’s gotten fatter.” Then add something like, “hey maybe we could get him to go away,” then help her shout at 400… just another thought.

    I also find it extremely interesting that all her names are so complex, and most are based on times. they’re dimensional-based names and i don’t think that’s a coincidence. powerful mind she has, if only there was a cure. i wish your daughter the best, and cannot wait to see her reaction if she is one day ridded of this nightmare

    Note from Michael: I’m not offended but LSD is dangerous for those with hallucinations. The risks of any hallucinagions for anybody with psychosis is a HUGE risk. You would be putting their lives at risk because you have no idea how they will react. Very, very dangerous. NEVER encourage anyone with psychosis or hallucinations to drop LSD! EVER!

  313. Just put in a request to join your yahoo group. I am appalled at the lack of mental health service available to capable families who earn a decent income. I have two children with neuropsych issues, work as nurse in public school special education with kids ages K-12th diagnosed with severe emotional impairements, and am on local Tourettes association state board. My oldest son has mild Tourettes with co-existing issues and superior range IQ, and my youngest son is highly gifted with IQ of 139, was diagnosed with adhd/mood disorder-nos when younger. Recently after a flurry of mental health needs exacerbated by puberty and social challenges of middle school he was diagnosed by University of Michigan children’s inpatient psych hospital as also having pdd-nos (high functioning autism spectrum). For his situation the diagnosis of mild autism seems appropriate. This fall has been incredibly difficult for my son and for my family. We have sought out help through as many private/community venues as we possibly could find and I have been relentless in my asking for help. The bottom line is… appropriate quality care is incredibly difficult to find and access. I started to write details here of our family situation to highlight our challenges and the help/hindrances we have encountered but as this is an open page I don’t want to divulge our situation in this format for others to critique. However I’d love to network with other families for support and care options. Enjoyed reading your families open hearted and honest journey. You and your wife have put a real face to living with childhood mental illness and the responses you receive really reflect the diversity of opinions out there. I get it….

    Note from Michael: Ruth, are you in the group? If not, email me at michaeljohnschofield@me.com.

  314. Food Intolerances and schizophrenia link
    Dear parents,

    Have you ever paid for an IgG finger prick blood test? They often reveal foods that people are intolerant to. These foods can affect the brain and there is a huge correlation between mental health and food. I believe schizophrenia, for instance, has been linked to a gluten/gliadin intolerance and, when COMPLETELY ELIMINATED FROM THE DIET, can profoundly heal the symptoms of the disease.
    What happens is that, undigested food leaks through the intestines (when it is not supposed to, because the individuals have a ‘leaky gut’), it becomes toxic, enters the bloodstream and then passes the blood brain barrier affecting the brain.
    Despite being told that my very intelligent, but speech-disordered and delayed, son was not allergic to wheat and dairy by the medical profession, I later found out, through my own research and an IgG finger prick blood test that he has intolerances to these foods. Since eliminating them, my son is now speaking in full sentences. He was speaking before but not like the amazing gains we have found with eliminating certain foods from his diet (particularly dairy), although I believe schizophrenics can’t tolerate gliadin (gluten), found in wheat, barley, rye, oats and other foods.
    I leave this thought with you in case it is an avenue you wish to explore?
    Sincerest best wishes,
    Julie (UK)

  315. Your daughter is Brilliant and Beautiful! I’ve no doubt she is brilliant, a genius. My guess is that she’s blessed with Synesthesia,too; hence the many numerals that she Sees and the names… Some aggregated info:

    http://web.mit.edu/synesthesia/www/

    syn-es-the-sia n. Physiol. Sensation produced at a point other than
    or remote from the point of stimulation, as of a color from hearing a
    certain sound (fr. Gk, syn = together + aisthesis = to perceive).
    *

    Synesthesia is an involuntary joining in which the real information of one sense is accompanied by a perception in another sense. In addition to being involuntary, this additional perception is regarded by the synesthete as real, often outside the body, instead of imagined in the mind’s eye. It also has some other interesting features that clearly separate it from artistic fancy or purple prose. Its reality and vividness are what make synesthesia so interesting in its violation of conventional perception. Synesthesia is also fascinating because logically it should not be a product of the human brain, where the evolutionary trend has been for increasing separation of function anatomically.
    R. Cytowic, “Synesthesia: A Union of the Senses” Springer-Verlag, NY (p.1)

    Famous Synesthetes: Itzhak Perlman, Richard Feynman, Albert Einstein , Jimi Hendrix

    *
    Tilda Swinton thinks in food.

    Since she was a child the ‘I Am Love’ actress has always associated a different edible item with the words she uses, though she is unsure why.

    She explained: ‘The word ‘word’ is a sort of gravy. ‘Table’ is a slightly dry cake. ‘Tomato’ is not actually tomato, it’s lemony.’
    *
    Some musicians and composers have a form of synesthesia that allows them to hear music as colors. Mozart is said to have had this form of synesthesia. He said that the key of D Major had a warm “orangey” sound to it, while B flat minor was blackish. A major was a rainbow of colors to him. This may explain why he wrote some of his music using different colors for different music notes. Also, why much of his music is in more major keys.
    *
    According to biographer Brian Boyd[citation needed] and others, Nabokov was a self-described synesthete, who at a young age equated the number five with the color red.
    *
    Around the year 550 B.C., the Pythagorans offered mathematical equations for the musical scales, showing that musical notes could be seen as relationships between numbers. A musical scale, for example, could be divided into eight notes, an “octave” scale, which repeats its sequence as the musical notes proceeded higher or lower. To use a basic example, this could be the C-Major scale on the piano, consisting of just the white keys: C-D-E-F-G-A-B-C. This is also the basic “do-re-mi-fa-so-la-ti-do”.
    Around 370 B.C. or so, Plato wrote Timaeus, in which the soul of the world is described as having these same musical ratios. A cosmology was emerging in which the planets’ radii (the planets’ order actually varied, depending upon the author) were set with a ratio sequence of 1:2:3:4:8:9. Later, ratios would emerge with the following ratio sequence: Moon = 1; Venus = 2; Earth = 3; Mars = 4; Jupiter = 14; Saturn = 25. This sequence approximated the Greek diatonic musical scale’s ratios, thus the planets were tied to music, and a concept of “the music of the spheres” was initiated. 

    Around 350 B.C., Aristotle wrote to maintain that the harmony of colors were like the harmony of sounds. This set the stage for a later equating of specific light and sound frequencies, as Aristotle’s works were translated and incorporated into European sciences. 
    *
    in most cases the stimuli that induce synaesthesia are not sensory, but conceptual categories of learned objects, such as letters, numbers, days of the week, months of the year. The most common types involve coloured letters or numbers and what are called mental “number forms”.

    These go beyond the typical mental number line that most of us can visualise from early textbooks. They are detailed, stable and idiosyncratic forms in space around the person, where each number occupies a specific position. They may follow complicated trajectories through space, even wrapping around the individual’s body in some cases. These forms can be related to different reference points (body, head or gaze-oriented) and can sometimes be mentally manipulated by synaesthetes to examine them more closely at specific positions.

    The suggestion in relation to savantism is that such forms enable arithmetical calculations to be carried out in some kind of spatial, intuitive way that is distinct from the normal operations of formal arithmetic – but only when the brain is wired in such a way to take advantage of these special representations of numbers…

  316. Dear Mr. and Mrs. Schofield,
    I have just finished your book January First. I am remarkably estatic that I am not alone. There are so many parallels to my story with my daughter. I am absolutely fed up with the doctors. I picked up a book called coping with schizophrenia and I learned more in that book in three chapters then I learned all these years. My daughter is now 14, has been hospitalized 5 times and in a residential treatment facility for over a year. After she threatened to cut my heart out with a piece of glass. This crazy world in which we live wants to hold these people responsible without help. My goodness can they recognize that yes, even children can have schizophrenia. I feel that I am in your boat and constantly battling every day. It is a struggle. I also have a 7 year old who is constantly on pins and needles one minute her sister loves her the next she hates her. It was ans sometimes is tearing my family appart. I felt your pain in your story and as I know I am not alone , you are not either. And neither is Janni. My daughter is just like her. But as parents we continue to love and accept as hard and difficult as it is sometimes. I walk your path. I have a meeting with the psychologist today and I don’t know that it will go well, because nobody wants to see and accept the truth. The best thing I found for me is wrtiting poems and also joining NAMI. Oh relief I am not alone. Now all I have left to do is fight, fight for me, my family, and for my daughter Gwyneth. Peace and love to your family, I know moving forward I will now think of you often and pray things go well. I think I have the acceptence down as hard as it is, because my mother was/is a schizophrenic, and had 7 shock treatments when I was just two. I do not feel guilty that I may have passed those genes on, I can’t do that to myself. Blame hasn’t gotten me no where in all these years. There was a tremendous amount of blame, now it’s grab the bull by the horns and move forward. (It was just last night my daughter told me she has “friends” she doesn’t want to tell the doctors because she thinks they will take them away. So yes we are on the journey as well…..I hope that you read this. My heart is with you guys, and from your book I feel everything you felt, I feel your heartache sorrow everything. I felt like I really got to know you, because you in a sense described me. I am sick of the Mood disorder NOS diagnosis, because that is what they always told me. I personally took her off adderall, because why in the hell would you give someone who is schizophrenic speed. The best choice I did. Right now she is on flouxitine, lithium, and seraquel. (I am worried about the seraquel because it is a newer drug does that make it better?) I suppose, I will end this comment in the great hopes that I might just might hear back from you. God Bless, Paula Snider pcparkman2001@yahoo.com

    1. Michael: Paula, I am going to send you an invite to our private Yahoo Support group for parents with mentally ill children. People going through exactly what you are who can answer your questions. The invite will come from my Profschofield@att.net email.

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