Month: August 2009

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.

About Schizophrenia

Childhood schizophrenia is a type of schizophrenia, a chronic mental illness in which reality is interpreted abnormally (psychosis). Childhood schizophrenia is essentially the same as schizophrenia in adults, but it occurs early in life — sometimes even before the teen years — and has a profound impact on a child’s ability to function.

Childhood schizophrenia includes hallucinations, delusions, irrational behavior and thinking, and problems carrying out routine daily tasks, such as bathing. With childhood schizophrenia, the early age of onset presents special challenges for diagnosis, treatment, educational needs, and emotional and social development. Childhood schizophrenia is sometimes called childhood-onset schizophrenia or early-onset schizophrenia. It’s also sometimes grouped together with similar conditions known collectively as schizophrenia spectrum disorders.