Article

Our Cause

 

 

Manifesto of The Jani Foundation

 

 

The purpose of the Jani Foundation is to improve the quality of life for children with mental illness and their families/caregivers. Primarily, the focus of the Jani Foundation is on aiding children with mental illness that includes some inclusion of psychosis, be it schizophrenia, psychosis NOS (not other specified), bipolar with psychotic features, or a child exhibiting symptoms such as delusional/paranoid thinking, hearing “voices,” (“commanding” or otherwise), consistent engagement with or fear of individuals only the child can see, or violence that does not appear to have an “external” trigger.

 

Education:

 

The Jani Foundation believes that all mental illness is BIOLOGICAL in origin. We reject the idea that psychotic illness can be “created” by any external forces. Although we acknowledge that psychological trauma can exacerbate psychosis, IT CAN NOT CAUSE IT. We believe this for the simple fact that if trauma caused psychosis, all humans would suffer from psychosis. Unfortunately, we all experience psychological trauma. It is part of the human condition. By the simply being alive and having to interact with the environment, a person will get psychologically hurt. The fundamental flaw with the trauma-based or “environmental” model of the development of psychosis is that if indeed the human mind was that fragile our species simply would not have survived to the present day. Such a glaring weakness in our psychological composition would have led to our extinction long ago. Our ancestors faced trauma on a daily basis and yet our social development has continued.

 

Therefore, psychological trauma, no matter how severe, does not cause psychosis. You cannot induce or create psychosis in an individual, any more than you can induce or create cancer.

 

But wait a minute, you say: many external factors cause cancer.

 

No, they don’t. Yes, smoking, exposure to asbestos or other chemical poisons, or radiation CAN increase the risk of cancer. But there are those who smoke for years and never develop lung cancer. Likewise, there are those who never smoke a cigarette in their life but still develop lung cancer.

 

This is because what ultimately decides our susceptibility to cancer is our genetics, whether or not we have a genetic “predisposition” to cancer already contained within our DNA.

 

So it is with mental illness. Just as with cancer science has not been able to establish an ironclad connection between cancer and genetics, science has yet to establish such an ironclad connection between genetics and mental illness. We have mapped the human genome, but that is only the beginning. We still do not know what many genes do. We understand only the basic function of most, and even that is mostly an educated guess. It may be decades before we understand how the sequencing of the genetic code can produce mental illness This is further complicated by the fact current genetic research is showing that predisposition to certain illnesses is likely not the result of a single gene but is probably caused by multiple genetic combinations, perhaps number in the hundreds or thousands. However, just as having the presence of a type of cancer in one’s family background increases your risk of that type of cancer, there is sufficient evidence that having the presence of mental illness if one’s family history dramatically increases the chances of one’s child or children having a mental illness as well.

 

Then there is our limited knowledge of the brain. Neuro-science, compared to other fields of medicine, is still in its infancy, due to fact that the technology that allows us to understand how the brain functions (such as the dopamine receptors in the brain) is relatively new, and because that technology is massively expensive and insurance companies often won’t pay for a single MRI, let alone multiple MRIs taken over a period of years.

 

Purpose of advocating for the biological model of mental illness:

 

1. To improve development of medications that can target specific areas of the brain that are not functioning properly.

2. To provide further evidence to eliminate “behavioral treatment plans” which essentially treat mentally ill children and particularly mentally ill adolescents as “bad kids.” There is a biological reason for their anti-social behavior. Mentally ill children and adolescents are well aware of what the consequences of their actions are. Yet they persist in their behavior. Doing something that one knows will result in punishment or the loss of privileges and doing it anyway is the very definition of “insanity” (which is a legal term, not a medical one). It is not in our nature to seek pain. It is in our nature to make our lives as easy as possible. A child or adolescent who continually “acts up” despite awareness of consequences does so because he or she CANNOT control their behavior. Behavior must be “redirected,” which means getting the child to focus on something else, something positive, rather than punished. All punishment teaches mentally ill kids is that “we,” the rest of the society, cannot be trusted.

3. To end the blaming of parents for the child’s mental illness. Parents love their children no matter what, but often find themselves the target of social services when they seek help. To often this leads to increased stress and dissolution of the family unit. We believe that the family unit is a mentally ill child’s best chance to reach his or her full potential.

 

Educating the public that mental illness in children is not a new phenomenon:

 

The diagnosing of children with severe mental illnesses like bipolar and schizophrenia is nothing new. It SEEMS new only because of “deinstitutionalization,” the process of closing state run mental hospitals that began in the late 1960s and continued through to the late 1990s. Had she been born in the 1960s, Jani would have been placed in the “Back Ward” at Camarillo State Hospital in Camarillo, Caifornia, the ward reserved for the most severe cases that could not function outside the hospital. I know this because I have met several nurses and social workers who worked there decades ago. There were children as young as twelve inside Camarillo State. When Governor Pete Wilson ordered Camarillo closed in 1997, most of the 300 remaining patients were under age 18, of whom most ended up in “group homes” scattered around Los Angeles County.

 

However, the Jani Foundation does not support “re-institutionalization.” We do advocate for the building of more inpatient hospital units for children, more beds in units that already exist, the separation of children and adolescents (as most hospital psychiatric units combine both children AND adolescents), and the development of psychiatric emergency rooms.

 

We support the continuation of the current system of hospitals serving as “acute” treatment centers only. However, insurance company “doctors” who have never seen the patient currently have the ability to deny payment for continued days. This process must end. The treating facility and the treating facility alone must be the ones who determine how long a stay is needed to stabilize a child dealing with psychosis, not insurance companies. The Jani Foundation supports the enforcement of “parity laws” which were designed to force insurers to treat mental illness the same way they treat physical illness.

 

Call to Action:

 

2. A federal law must be passed that prevents insurance companies from overriding the input of the treating physician.

3. Such a law must prevent insurance companies from dropping coverage on children with mental illness or reducing mental health benefits. All mental health benefits should be unlimited (unlimited inpatient days and unlimited outpatient psychiatric and therapy visits).

 

 

Generally, the Jani Foundation opposes sending mentally ill kids to “residential treatment centers” and is completely opposed to sending them to “group homes.” First, this does not help mentally ill children integrate into society. Failure to learn to function with their mental illness in society can lead from residential straight to jail.

 

First and foremost, we believe the family of the child is the best environment for the child. Therefore, it becomes our responsibility as fellow citizens to ensure the child and family have the support they need.

 

If residential becomes necessary, we will only support and recommend those residential treatment facilities that have the following:

 

1. The staff must be psychiatric nurses, because they have experience and knowledge with the medical needs of these children and the potential side effects of the medications. Most facilities do not have a nurse available 24 hours a day, 365 days a year. This is shocking.

2. There is a psychiatrist on call at all times.

3. The facility can deal with medical problems. This means there must be a medical doctor on call at all times.

4. The facility uses positive reinforcement of behavior ONLY. We oppose the use of restraints, mechanical or otherwise. We also oppose any facility that “locks” a child away, alone. If a child is psychotic, the worst thing you can ever do is leave them alone with their own mind. They are human beings. Talk to them. Play with them.

5. The facility believes in the biological model of mental illness

6. The facility encourages parental involvement.

7. The facility encourages interaction between the children/adolescents and the community. These places are not meant to be prisons.

 

 

Call to Action:

 

1. Child Protective Services needs to be checking up on the welfare of mentally ill children and adolescents inside residential facilities. Abuses must be investigated.

2. All employees of residential treatment facilities must be trained in the nature of psychosis and how to appropriately deal with it. Outside of nursing, advanced degrees in medicine, psychology, physical and recreational therapy, and education should be required.

 

 

Current Failures of Mental Health Care as We See It:

 

There is a six-prong failure of the current mental health care system in the United States. They are:

 

1. Lack of government funding:

 

This lack of funding predates the current economic problems in the United States. Taxpayers seem perfectly willing to let their money be used by state governments to hire private companies to build more prisons, but they don’t want to spend the money on services which would eliminate the need for increased numbers of prisons, as well as being less expensive in the long run. Currently, the California Department of Corrections is the largest provider of mental health services in the WORLD. Because of failures to fund local preventative services, many mentally ill individuals do not receive mental health care until they commit a crime.

 

The Jani Foundation does not support either Republicans or Democrats. This has nothing to do with 501c3 rules against political support of candidates because we are not, as yet, a 501c3. Rather, it is because neither party gives a damn about mental health, either for children or adults. Pushing for increased funding for mental health services is not politically popular. It is easier to generate a sound bite about being “tough on crime” than push for local and state mental health care services. Even though a mentally ill young man very nearly killed one of their own (US Representative Gabrielle Giffords), Congress still doesn’t seem to care, perhaps because it doesn’t affect their children. The other issues is that there is no “quick fix” for mental illness. These illnesses are lifetime illness and the truth is we must support these children and their families FOR LIFE.

 

2. This lack of funding for existing services like California’s “AB3632” law that requires school districts to provide mental health services to students means that state and local agencies participate in what we call “the politics of exclusion.” Rather than the goal being to provide services to as many people as possible, the goal of these state agencies (like the Department of Mental Health, Regional Centers, and contracted private non-profit agencies like the Santa Clarita Child & Family Center) is find any excuse they can to DENY services in order to preserve their meager budget.

3. What money does trickle down to these agencies is wasted by a bloated and uneducated bureaucracy. For example, absolutely no one at the Los Angeles County Department of Mental Health has any experience with severe psychosis, either in children or adults. These workers are bureaucrats who push papers and list rules, not provide real help. What these agencies need are not Masters’ of Public Administration. They need psychiatrists and psychologists trained in dealing with psychosis.

4. The “services” that exist are designed for the short-term, not long term support. Services like “WrapAround,” are designed to “teach” parents how to “handle” their children, ironic considering that we have yet to meet a Wraparound worker with any experience in dealing with psychosis. Wraparound is a short-term, behavior modification based program designed to teach parents how to be parents. What parents of mentally ill children need is respite care (which state workers experienced with psychosis), financial support (as gradually taking care of a mentally ill child erodes one’s ability to work, unless the child is sent to residential care), and access to therapies that will help their mentally ill child, such as animal therapy, equine therapy, art therapy, recreational (play) therapy, occupational therapy, and social/peer groups (as mentally ill kids feel more secure when they are with others who “get” them). Mental illness is a life-long affliction and the Federal, State, and Local governments must realize that a “band-aid” solution of sending out a recent college graduate in psychology to judge your parenting will not prevent the alienation of mentally ill children in our society.

5. The reintegration of psychiatry and psychology: Ironically, psychology was born from medicine. Freud was an MD. Yet as the 20th Century progressed, psychology moved further and further away from the science that gave birth to it. Modern psychology has become a joke, based more on “pop-culture” psychology than real clinical research. This leads to such ridiculous things as social workers and psychologists accusing a parent of a mentally ill child of “Munchausen By Proxy,” or the manufacture of a mental illness in their child to get attention. If psychologists had more medical knowledge or were actually required to do real clinical research for their degrees, they would know that has NEVER BEEN a confirmed case of a parent “causing” a mental illness. Munchausen By Proxy is a term used by forensic psychologists to describe parents who caused a PHYSICAL ILLNESS in their child during a criminal trial for murder, attempted murder, or child abuse. This is an example of “pop psychology” being applied in situations where it is not appropriate and since CPS social workers can remove a child from a parent without needing to show “just cause” (the only aspect of the criminal justice system that can do this), families get broken up.

 

The Jani Foundation advocates the termination of the “Marriage and Family Therapist” degree and the elimination of psychology as a separate area of study from medicine. We propose that psychologists and psychiatrists be educated together, leading to the eventual end of psychology as a separate field from psychiatry and the reintegration of the two sciences back together.. Honestly, the best therapist we know is our psychiatrist. She works more like a therapist, talking to Jani and to us, getting to know us, and not just prescribing medication in 15 minute sessions.

 

6. The failure of current non-profit organizations focused on mental illness.

When NAMI was formed in 1979, the landscape of mental health care in America was very different. State hospitals still existed and long term care was available. Services existed then that do not exist now. Therefore, NAMI’s focus became education about mental illness and the fighting of stigma. But what good is educating parents about mental illness IF THERE ARE NO SERVICES AVAILABLE TO HELP THEM. It is like being told you are going to die but not how to save your life. The Jani Foundation opposes donations to NAMI, The Child & Adolescent Bipolar Foundation, Autism Speaks, and any other organization that does not provide DIRECT SUPPORT to families dealing with mental illness. Families with mentally ill children need real services like respite care and financial support to keep a roof over their heads and food on the table. Our children require full time care. They must be watched all the time. That makes it difficult to work a full time job. I understand that the need is greater than what any non-profit can provide, but as long as the government fails to provide real help, the non-profits must. And if they don’t, they shouldn’t be begging for money to survive. Susan and I pay out of our own pocket every month now to help out other families with mentally ill children and we don’t have the pharmaceutical industry funding us or a $250,000 Pepsi Refresh Grant or a portion of sales at Toys ‘R Us (NAMI, CABF, and Autism Speaks, respectively). If these organizations feel all they can do is “educate,” fine, but they don’t need a ton of money to do that. The money is needed for providing real tangible help to mentally ill children and their families in need.

 

Soon, we will be setting up a financial co-operative between parents of mentally ill children. Everybody pays in when they can and if you need the money to pay bills all you need to do is ask.

 

If you want to donate, make sure your money is really going to a family who needs it, not to pay the overhead of a bloated non-profit so they can make a “video” or write up a pamphlet. You can visit www.facebook.com/janifoundation to see the families in need. Even if you can’t give money, come visit. Come see what families with mentally ill children are really dealing with.

 

And ask yourself why they come to two parents instead of to an organization like NAMI.

 

 

This is who we are. This is who we will always be. We will always be parents of a mentally ill child (or children). If you are ready to fight, if you are ready to commit to a war that will never end, come join us.

 

I can guarantee you, when you see a mentally ill child smile, it makes it all worth it.

 

111 comments on “Our Cause

  1. Thanks for the invite
    Thanks for your note today and for the invite to the new blog. Boy – numbers 6-8 would be great, wouldn’t they? Some days I’d just settle for true mental health parity, not that joke of an act that goes into law in 2010.

    I’d also like to plug if I may for the Child and Adolescent Bipolar Foundation, a non-profit organization that helps parents and caregivers of children with severe mental illnesses. I’m a volunteer, and I couldn’t get through the day without the support of my peers there.

  2. Health Care Reform
    Are there any changes in the health care reform that can assist Jani and other children like her in Point 5? I desperately hope so.

    Thank you for the opportunity to comment 🙂
    Best,
    Charley

    Note from Michael: I’m not sure, Charlie.

  3. I see..
    I see myself sometimes when I see Jani. I too had Childhood Schizophrenia (of course not now since I’m older. my diagnosis is now paranoid Schizophrenia) anyways, I hope that Jani knows that she has tons of potential to become whatever her heart desires. We must control this illness, and not let it control us 🙂 I remember my parents and how hard my diagnosis hit them… It’s tough, but as long as we have each other, who can stop us? No one! 🙂 And may all of those who carry the stigma of mental illness feel comfort.

    thanks,
    Jess.

    Note from Michael: Thank you, Jess. Thank you for giving me hope.

  4. Schools
    Here in NJ there are many schools for special needs children, including those with mental health/illness issues. I don’t have as serious issues as Jani, nor was I that young, but know that at least somewhere in the country, people are doing something and helping out. I went to, in my opinion, the GREATEST high school that dealt with teens who had various mental health issues and it was the best experience of my life. Of course, I would have never made it through without my mom being right along side of me and being my advocate. So to both of you, keep fighting…you’re doing a great job! Also, on a side note, I’m studying to be a music therapist, has Jani tried that?

    Note from Michael: Yes, she has a little bit, in UCLA. She even wrote a song! It is something that we want to be a part of the non-profit we are setting up that will provide various therapies and support to mentally ill children and their families. On my “resources” page there is a link to the Facebook page about it, although it is no longer called The Village Project. We had to change the name for trademark purposes but going there will give you a rough sense of our plans.

  5. I just want to say………
    I just saw your special on Discovery Health regarding your daughter Jani.
    I’m sure you have heard this before, but I really wanted to email you myself.
    I think you both are just amazing!!!!!

    You are very lucky to have each other! & Jani is a very lucky little girl to have parents who love her so much! (& a little brother) !

    Take Care & God Bless

  6. As the parents of a 16 year old Schizoprenic child “Roman” we are now in our second high school with the hopes that the new one will do what they say…improve his life at school because of their particular ED (emotionally disturbed) program. Apparently not all schools have it but those that do work. I know that my wife and I are very impressed so far.

    Roman has been diagnosed since 14 and is now on his 3rd different medication. We have high hopes in this as he not only suffers from Schizoprenia but Anxiety, Depression, OCD and Dysgraphia. All of this making school very painful for him. Your story on the Discovery Health Channel gave us many emotions and hope.

    Thank you,

    The Williamson’s

    Note from Michael: Thank you, Bruce and Brenda. I would welcome you to our private online support group for parents of mentally ill children and adolescents. Here is the link: http://health.groups.yahoo.com/group/parental-support/. the group is private and membership is approved only by me. There are MANY other families going through exactly what you and your wife and son are going through right now.

  7. Beautiful Jani
    Hello –

    I just happened to be up late with my insomnia watching TV. I love Discovery Health and decided to watch your story. I am always intrigued by anything to do with Mental illness and how it is so misunderstood and the resources are very few and limited. Living with depression most of my life – you do fee alone in this world.
    Jani’s story truly struck a cord with me. First off, you and your wife are 2 of the most amazing human beings.
    I have 2 healthy teenagers and what i have gone through and am going through is “bliss” compared to what you have endured.
    Your patience, love and true tenacity shines through and January and Bohdi are truly blessed to have parents such as yourself.
    I also want to thank you for being a voice not only for your daughter, but other people who have suffered or are suffering with Mental Illness.
    I truly hope that with this awareness – that there will be a cure someday. More funding and testing needs to be done about mental illness.
    I will definetely follow your journey and support you any way I can.
    Thank you for sharing. You are AMAZING !!

  8. I saw your special on the Discovery Health Channel and I wanted to let you know how very much I admire what you are doing as parents. I can’t even begin to understand what it feels like in your shoes, and I won’t pretend that I do. As a parent though, I do understand the need to give everything within yourself to provide for the needs of your children. I wish I had insighful advice or financial means to offer you some assistance, but unfortunately I do not. I do however offer you the unwavering support of a complete stranger who greatly admires your family. Peace, love, and happiness from my family to yours!

    Melissa (Augusta, GA)

  9. Hello jani
    I have seen Jani on a few shows now and I just watch them Jani
    has such a sweet face and is just so blessed to have such wonderful
    parents like you to take her through life .I am amazed at your family
    and how you just wake up everyday and make it work for jani and your
    family .as I write this I want you to know you are in my thought’s and
    prayer’s

    God Bless you:)

  10. Just a note to say I see Jani on shows and I am just amazed what a wonderful girl she is such a sweet face you are such amazing parents
    I always have you in my thoughts and prayers god bless you

  11. Saw you on Discovery…
    It touched our hearts and reminded me of our second oldest daughter, Katie. We always knew something was wrong. Her biological father had bipolar and so do I. I never expected it to manifest itself in her so young and so differently from our own mental illness. She used to throw tantrums and fling herself head first into the bricks of our fireplace. She would smack herself in the head or bang her head into the wall. It was so frightening. It wasn’t until she was much older that she began to threaten hurting herself. She also has tried hurting me and her younger sisters. She is on medications now, she is 13 and seems to be doing alright, but it’s usually the small things that set her off. I suppose my biggest fear is how to help her and keep her safe when the time comes that she feels she can take care of herself or wants to get off her meds and I can’t do anything about it except tell her it wouldn’t be such a good idea. I think the both of you are incedible parents! And you inspired me.

    Note from Michael: Thank you, and please consider joining our private online support group for parents of mentally ill children. Many of them share your exact same fear. What happens when you have no legal control over your child anymore? http://health.groups.yahoo.com/group/parental-support/

  12. I watched the special on Jani last night and I was touched by your family. I went through some similar things with my little girl. She too has a high IQ and after many diagnnoses ranging from ODD, Bipolar NOS and ADHD now is diagnosed with Asperger’s. I also have a sister who was diagnosed with paranoid schizophrenia at 16. She is now 30. You both are very supportive and patient with your daughter. Thank you for sharing your story.

  13. I too have a child who suffers from mental illness. My husband and I have only recently heard of your story when it aired on 20/20 and again on discovery health.
    We have chosen to place our son in residential care, when the safety of our other two children became too big a burden. It ultimately became a choice that the Child protective services forced us to make. Keeping our son Matthew at home vs the safety of the other two children. We discussed splitting up our home the way you have, at the time it did not seem plausible, I wish I had seen your story a year or two before we placed him in residential care. We are impressed with your ability to keep Jani home.
    Do you still have a website for parents of children with mental health issues? I would love to become a member.

    Note from Michael: Yes, it still exists. It is a private online support group, not a website, to protect the information of its members. Here is the link to join: http://health.groups.yahoo.com/group/parental-support/

    And please don’t feel bad about putting your son in residential. Currently, Susan and I are creating the Jani Foundation to provide in home services so that families with mentally ill children can stay together.

  14. I don’t have schizophrenia, but I understand a lot of what your going through
    I saw your story on the Discovery Health channel, and I understand so much what it must be like not only for you, but for Jani. I have severe bipolar disorder that started mainly when I was 6 years old. Beforehand, my family thought I was very intelligent and I knew how to read, but once my symptoms started, it seemed like nothing worked. Before I got on the right medications, I would hallucinate, try to kill myself, try to kill other people, run from where I should be at random times. When I was watching, I felt like I was looking back in time. I used to see bunnies, people, giant teddy bears, and cartoon characters that weren’t there, and I’d talk to them in school or try to hurt them, but really I was hurting people near me.

    I really hope you guys get her medicine where it should be. It’s never easy for anyone, but once she’s stable, everything will be worth it. Good luck, Jani ;D

    Note from Michael: Thank you, Rachel. Your story, which does indeed sound a lot like Jani’s, gives me a lot of hope.

  15. Saw your show on Disc Health. Thank you for getting the word out on mental illness in children.
    I saw many similarities in Jani to my own son. He is 5 and has severe autism. He is nonverbal but has above average intelligence. He also does not sleep and can never be left alone, not for one second. He loves heights and water- he is almost magnetically attracted to them. Also he is a “runner” and an escape artist. Our other children are older but I can appreciate your concern for the safety of your younger son. My guy also has self-injurious and aggressive behaviors, especially when his routines are interrupted (his mind is ruled by OCD). Once he needed to go inpatient but there is not inpatient for children who cannot speak, are not potty-trained, etc.

    Note from Michael: You are absolutely right, Kristy. Thank you for reminding me of this key need! The Jani Foundation must also be prepared to provide services to non-verbal, non-potty trained children. It angers me that you can’t even get your son inpatient! Thank you for sharing your story and I hope you join our parental support group: it is for both mental illness AND autism. Susan and I have always felt that parents of mentally ill kids and parents of autistic kids share many of the same issues. The group is called “Parental Support” for a reason: It doesn’t matter what the diagnosis is. We all need help and our children need a life of happiness.

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

  16. Concerned
    My heart goes out to you. Jani is a beautiful girl who was created for a purpose bigger than you can imagine. Jani can be healed! Please look in the bible and there will be an answer for you. No medication, or therapy, or medium can help. Only God can completely cure her. God bless you. You are in my prayers

    Note from Michael: I agree, Concerned, but I believe God works through people. It is our job to carry out God’s work. When you pray, God sends people to help.

  17. I don’t have Schizophrenia, I have Dissociative Identity Disorder which is commonly confused with Schiz. I have had D.I.D since I was nine, and it has been a living hell but with family, therapy and a little injection of friendship… things have settled down. life is still hard, and i’m working on a book describing my journey, in the hope of helping other people to see the light.

    But anyway, I have three best friends with the disorder, and although times can be rough, I’ve never seen such determined people. As Susanna Kaysen, writer of ‘Girl, Interrupted’ once said, ‘being crazy isn’t about harbouring a dark secret… it’s you or me, amplified’.

    i feel for your little girl, and hope that you all get the support that you need. i know from personal experience that mental illness is hard but family and support, of which she seems to have a lot are the best remedies. Jani is so beautiful and bright she will be very successful in life, and I really hope that things get better in the long run for you all.

    Note from Michael: Thank you and my hat is off to you. Your story inspires me and gives me hope.

  18. Just keep Going
    I started seeing “things” at the age of 16/17 (Now 22) and it took me a while to get used to them, then the voices came and currently I hear ten. I also see things and feel things, but I am not a diagnosed schizophrenic, but I have a list of other things I am diagnosed with.
    Yes it is hard to deal with the demands that these “things” put onto you, but with time comes coping techniques.
    Here in the UK I am now starting to campaign to provide people who hear voices or see things a safe place to talk in the shape of my forum, but this is also for carers, family and friends.
    I am trying my hardest to keep the NHS funding going here in my area for the help I need and others in a similar situation need.
    I am in the adult service and I know how hard it has been on me, so I can only imagine how hard it is for you.
    Just keep going, and like others have said just because you have this label (schizophrenia) does not mean life stops.

  19. Thank you
    Dear Schofield Family,

    I just saw you on Discovery Health, thank you so much for sharing your story. My beautiful 9 year old daughter was diagnosed with Tourette’s Syndrome when she was 5. It has been very mild although she has suffered from OCD, anxiety and ADHD and it was a constant struggle that many times I did not understand. That was until she got a Streph infection a few months ago and it developed into Pandas Syndrome. Our daughter turned into a nervous, psychotic child who has verbal tics everyday for hours. It is getting slowly better but it’s always there. It could take months for her to fully recover. The world of mild tourette’s we knew is gone and now we welcome a new uncertain world

    My husband and I currently live in Connecticut but the cold weather really makes the winter work so we are working on moving to Southern California or Arizona so we can spend more time outside all year long because that seems to offer a better treatment.

    Thank you so much for sharing your story, it brought tears to my eyes and was what I needed to see.

    Thanks,

    Michelle Durham

    Note from Michael: Michelle, we have a private online support group for parents with mentally ill children. You are more than welcome to join. Here is the link: http://health.groups.yahoo.com/group/parental-support/

  20. Hello Jani’s parents! My name is Eileen, and i happend to stumble upon your story last night on discovery health. I was completely moved, touched, and inspired by your daughter and your story. Although I do not have any diagnosed mental illness, I was in and out of psycologists offices and spent a little time in a stress center when I was a teenager. To this date I still suffer from ups and downs, but I’ve learned to deal with them in my own way. The reason why i am writing you is because I am currently in nursing school, my whole life I wanted to help children/adolesants who have mental problems, and for me nursing was the way to go. For a while I had stopped wanting to become a Psyc nurse due to the things that other nurses have said about the specialty. Last night your daughter reinspired me to take up my passion for wanting to help those who greatly need it. I just wanted to say thank you for sharing your story with the world, and please thank you daughter for being such a brave little girl. I hope she knows how many people she has inspired because of her couragous story.

    Thank you Jani

    Eileen

    Note from Michael: Thank you, Eileen, and keep going! Jani’s nurses at UCLA are her second family. It is tough specialty but very rewarding.

  21. Wow! I’ve just finished several hours of reading your blog, viewing various video and reading articles about your family’s arduous journey. It is clearly impossible to come away from your ongoing story without marvelling at the degree dedication, commitment and sacrifice you and Susan have for your children. That you publically share it with the rest of the world is so very much appreciated, and it is obvious that your message has touched the lives of thousands of people, including those very families who share similar struggles with mental illness.

    Although all your time is consumed with raising Bodhi and Jani, do you think you will ever write a book about your experiences? You are such a gifted and eloquent writer, and certainly it would seem that you could benefit financially from the sales of a book, towards your bills or your future foundation work. I know I would buy a copy the first time it went into print.

    Thank you for allowing me a glimpse of your world. As the mother of a 3 year old daughter, I will forever be looking at my relationship with her a bit differently now. You and Susan make me want to be a better parent, and for that, I am so grateful. I hope today is a GOOD day for each of you.

    In serenity,

    Nora
    Santa Cruz, CA

  22. Discovery Health show which aired on 6/20/10
    Dear Michael & Susan: I have been searching every day to try and find how I can watch your show, which I believe is called ‘Born Schizophrenic, The Jani Schofield Story’ of something like that. Is there anywhere online or on Demand TV or can I order a copy of your show somehow? I missed it on the last night it aired as I couldn’t find Discovery Health channel in my area until the LAST 5 minutes of the show and also I didn’t realize it was aired in Eastern Time and I am Pacific Time – 3 hours difference! 🙁

    Thanks for any help on this matter that you can give me.

    Berni
    Seattle, WA

    Note from Michael: Currently, DHC has no plans to release a DVD version and the full version is not available online. However, I did a search and found this link which lists upcoming airdates: http://tvlistings.zap2it.com/tv/born-schizophrenic-januarys-story/EP01253579

  23. just wanted to say..
    i just wanted to say thank you for making the video about childhood onset schizophrenia. Also, i wanted to thank you for opening my eyes a little about mental illnesses. The video on discovery health channel and reading your story on this website has taught me that if i see someone acting seemingly outrageous to me, they may just have a mental illness like Janni and to except that,and not stare. Also, i wanted to ask Mr.Schofield how often he updates the blogs because i want to know how janni is doing. Anyway, i just wanted to say thank you.

    Note from Michael: When I write a new blog depends on whether I have something to say. At present (July 12th, 2010) Jani is out of the hospital, back home, and doing reasonably well except for some occasional breakthrough psychosis.

  24. Thanks
    Thanks for sharing Jani’s and your story with us. She’s a beautiful child (in many ways), and I believe that there is a reason for her to be here. I’m keeping you all in my thoughts.

  25. Hope
    My intention is to help you find another option of treatment for your daughter’s problem. I don’t know your faith and I am not trying to convert you to any religion. Please, don’t get me wrong. But I think you could have a better and happier life understanding everything from another point of view. There are many studies about mental disorders in spiritism including schizophrenia and maybe you can find in your country a place to help her. One advantage in trying other treatment is to reduce medicine that can damage your daughter’s health if she needs to take it for the rest of her life to control her behaviour.

  26. Believe
    I was touched when I saw your family on Oprah and on Discovery Health. Jani is a beautiful and intelligent child. God has put her hear for a reason. My hope and prayer for her is that she is able to be a successful adult and help others with this disease stay strong. I also know her story will help others and maybe help spark doctors to find a better treatment for childhood schizophrenia. I hope at least some of your ideas above, especially the one about a school for kids like Jani. As a future teacher, I feel education is important for kids and helps them learn about their world and it’s history. Good luck and never lose hope!

  27. Science
    I agree with the idea of science being a major factor in mental illness. We just lost our 5 month old niece to heart failure from a chromosomal defect named Trisomy 18. Her heart defect could have been surgically fixed, however the odds of her mental defect being severe, no doctor would perform the surgery (insurance issue too I’m sure). I am currently still in college and I am unsure about what I want to do, however chemical and biological research on the brain has been something I have great interest in. I hope one day that not only will there be better facilities to assist mentally ill individuals, but also that there will be a chemical or prosthetic help to “heal” such mental illnesses. Crazy I know, but if we never ask questions and push pass the ceiling, then we may never know our potential. Good luck to you and your wonderful family,
    The Almeidas 🙂

    Note from Michael: I am very sorry for the loss of your niece. It angers me that no doctor would perform life saving surgery simply because of a high risk of mental retardation. I believe everybody deserves to a change at happiness, regardless of what challenges they face.

  28. HAPPY (late) BIRTHDAY!!!
    dear Jani,
    HAPPY BIRTDAY!!!!!!!!!! its fun to be eight!!!!!!!!! Another grade , another year, and a fresh start. I’m Soooooooooooooooooooo sorry this is late but we had to to a bunch of stuff yesterday for MY birthday!!!!! yep, we were born on the same day. 🙂 … but i’m almost twice your age of 8!!!
    – question for Michael:
    What did you guys do for Jani’s B-day?…

    Note from Michael: We had a pool party with a Spongebob theme. It was nice. Becca came. Not as big a party as last year but it was nice.

  29. What a beautiful girl Jani is.
    Thank you for sharing this journey with us all.
    Jani is blessed to have been born to the two of you. You are taking very good care of her.

  30. i have a question
    hello, i have a question. If this makes u angry or something u don’t have to answer. You don’t even have to put this comment up ok?… I’m just trying to understand some things… Why does Jani rub her hands together like that?…. Is it just a “Jani” thing or…..

    Note from Michael: Why would it make me angry? It’s a valid question. Nobody really knows the answer. It could be a release of nervous energy (which is what I think). She only does it when she is happy.

  31. Hello
    I surely hope no one finds this offensive but am I the only who thinks Jani and her friend Becca are demon oppressed or possessed? I’m not implying that every schizophrenic has a spiritual origin but in the case of Jani and Becca it is as clear as day.

    Michael, if you reading this please take her to a church and have a pastor pray over in the name of Jesus Christ. It seems you have exhausted every option, what do you have to lose by going to God?

    If you want to go the spiritual route Michael, contact me. I too live in L.A. county. I have friends who are strong Christians who will help. Again, you have nothing to lose.

    Note from Michael: Thank you, but no. I am not sure why demonic possession seems so much more plausible to you than schizophrenia.

  32. Hi!
    I saw the DHC special, and I just wanted to say that seeing Jani gave me inspiration for my future. Just to see that she was still alive and to see what you were dealing with…it was amazing.

    I’m 17 and have had paranoid schizophrenia since age 11, so it’s nice to see that there is still hope in the world. I think you guys are doing a wonderful job caring for your daughter.

    P.S. Tell Jani I said hi!

    Note from Michael: I will and congratulations to you! Just living with schizophrenia is a huge accomplishment and one you should be very proud of.

  33. Your sweet daughter Jani
    I just wanted to leave you a message in your email. I sent it a few minut.es ago. It’s kind of long so you might want to print it. It’s up to you.
    Mr and Schofiel, you two are just so amazing to me in regards to how you help Jani and Bodh. I can imagine how tough it can be on the relationship with each other. But like with your children, you make it all work. I wish there was an award for parents of the year. I’d nominate you. You two deserve it.
    Keep smiling. And don’t forget to be there for each other.

  34. We would all love to support you!
    I saw a program on Jani and was so touched. I am a senior in college earning a degree for teaching elementary ed and special ed. I have worked with children with all sorts of “disabilities”. The thing is I personally suffer from a history of issues with depression (past diagnosies include bipolar, clinical depression, ADD not ADHD, and major depressive disorder). I know how hard it is to go through life when things just aren’t quite right in your head. I can only imagine what it’s like for Jani. I wonder though is she aware that she hallucinates? she seems to regard the numbers and friends with such regard that it seems as if she thinks they are real. Do you as parents “play along” with the hallucinations? How do you think it will effect your son growing up with a sister that sees things that aren’t there? Tese are just things that have popped in my head.

    I wish you all the best. Jani is an inspiring little girl and I hope she grows up to become a wonderful young woman. She is so lucky to have parents who refuse to give up on her and love her sooooooooooo much. I wish more parents had the love for their children that you do.

    Note from Michael: Amanda, I think it is great that as a future teacher you have experience and knowledge in this areal. It will be a benefit to your students because you will know that “behavior” might be caused by mental illness.

    We don’t exactly “play along” with Jani’s hallucinations. Well, that’s not exactly true. One of Jani’s favorite activities is “number surgery,” performing surgery on injured numbers. Now she does see numbers as hallucinations but it is hard to know if she is really seeing them then or if they are so much a part of her life that she uses them in her imagination, like how another child might play vet with stuffed animals. She will usually tell us when she is actually seeing things. We acknowledge her hallucinations as real but try to limit interaction with them to when it is appropriate. As for how this is affecting Bodhi, I don’t know. My hope is that it will make him more empathetic and understanding toward his sister.

  35. I am eighteen years old and a freshman in college. After seeing Jani’s story on Oprah and doing my own personal research on childhood scizophrenia I have decided that I want to work with children like Jani. This story is not only intriguing to me but has emotionally affected me as well. I regularly check up on your blog to see how Jani is doing and do research in any of my personal time. It makes me so angry when people blame the Devil or claim an excorsism needs to be performed. Jani is a beautiful and brilliant little girl, and her issues have nothing to do with religion. I greatly admire you and your family for what you have done for your little girl. I can’t wait until I am able to help families like yours, I know it is my calling. Thank you for informing me, and helping me make a personal decison for my own future. I wish nothing but the best for your family, Jani, and all the children who are like Jani.

    Note from Michael: Thank you for deciding to join the fight to give children like Jani every opportunity for a better life.

  36. Paranoid schizophrenia, child onset schizophrenia
    Dear Michael,
    I wanted to know what the difference is with Jani’s schizophrenia, and paranoid schizophrenia. Also, (i hope it doesn’t offend you if i ask) when Jani was little and had her “anger episodes” (saw it on DHC) would she just like, walk up to and start hitting you, or would you come find her to interact with her and she went after you. Another question about her episodes, (sry if this offends you, plz don’t be angry) after, did she cry, or did she not remmember what happened, or did she go on like nothing happened… did you guys ever talk to her about why she got so angry? Also, when the situation comes, how do you “talk” to Jani’s haulucinations?… And what do you do to deal with Jani’s schizophrenia?

    I hope you answer my questions and aren’t offended by me asking them. I care about your family. I would watch dicovery health specials about famalies dealing with kids who have tourettes, or kids with autism, and after they were done, i would go on with my daily life. I wouldn’t give it another thought. But when i watched your special… it hit home with me. I’m not sure why. I think it’s because i’m older now and realize with your blogs and this website, that you are real and not some, one hour special on television. You deal with Ja ni and her haulucinations everyday. not for just one hour.
    Best of luck!!! and thanks for listening!!!!

    Note from Michael: No, your questions don’t offend me at all. Paranoid schizophrenia and child-onset schizophrenia have many similarities (children can also be diagnosed with paranoid schizophrenia). People or children with paranoid schizophrenia tend to believe someone or something is out to get them or someone that they love. It is very terrifying for them. Jani doesn’t really experience this. Her schizophrenia manifests as hallucinations and disordered, illogical thinking.

    In answer to your second question, her hitting would come out of nowhere. She would come up to us and start hitting us.

    To answer question number three, when it was all over it would be like nothing ever happened. She didn’t cry nor did she seem to remember it. She would be happy, suddenly violent, and then happy again, which is why her doctor and us thought it might be bipolar for a while.

  37. Lovely Jani
    Just wanted to say hi to the Schofield family (especially Jani). Watched the Discovery Health special, expecting mainly to become more informed about schizophrenic kids (yes, there was a lot of that in it too!) and was primarily just so moved by how special, how lovely and (on many occasions) how happy Jani is, and how very much she is loved. I wish all kids could be loved and accepted like that. (Accepted for themselves, by families who are glad just to have them.) Many kids who have nothing “wrong” with them, just lack of love, are far worse off than Jani and will never really find their “home” in the world, or a place where they feel truly loved. To see a child with a serious mental health problem, but WITHOUT the troubles that lots of kids have, was just really a delight and so inspiring. Michael and Susan, keep up the great work!:)

    (To Damiso: I think it was pretty obvious just from watching her on TV that Jani has [and has always had] something affecting her brain, not something affecting her soul. Her soul is quite obviously just fine. Moreover, she does NOT act like people who are “possessed”, she acts like people who are schizophrenic. Kayla’s statement that “God has put her here for a reason” makes more sense. Couldn’t you think of Jani as someone sent to earth to help others learn more about people who are like her, instead of as a “normal” kid who became “possessed”? Possession, or something like it, perhaps may exist, but if so, it would be very different from early onset schizophrenia. I’m not sure why you find them so similar, apart from a few coincidental and unimportant “similarities”. If you’re that convinced that Jani’s type of schizophrenia is the type of condition most likely to be “possession”…then apparently both schizophrenia and possession are things you still need to learn a lot more about. Brain disorders are not possession. If possession exists at all, it would manifest itself very differently from that.)

    Bless you, Jani. Keep on letting your light shine!:)

  38. More about lovely Jani…
    Michael,

    After reading some of your blog writings, I just wanted to add to my previous post…it *might* not be completely true that Jani *cannot* make her own happiness, or that her talkativeness is *only* a way to stop her hallucinations from taking over. I know I only saw her for an hour on TV, while you see her every day, but…well. Could’ve sworn I saw a kid who does have at least *some* of her own happiness and who would probably be pretty talkative even if she didn’t have schizophrenia or any other disorder (she just wouldn’t be *quite so constantly* talking). (Also, on TV she did hug Bodhi and she did smile at and interact with both of her parents. I’m not saying she does those things every day, nor would I know if she did them frequently or not, but the fact [as I think it is] that *at that time* she showed that she *was* able to give, receive and ask for attention and affection, that’s captured on camera for the world to see. What I saw, personally, was a by-nature-meant-to-be-joyous-and-loving little girl, whose own nature shines through everything that happens to be wrong with her. What you report in some of your blogs is pretty much a child with no joy of her own and little love of her own, a child who can’t really hope for much more than to be distracted by her parents from her illness. That’s not what I saw. I respectfully request that you consider the possibility that the things like “she can’t make her own happiness” and “she hardly ever smiles at us” just *may* be one of those “how Dad was feeling at the time” things rather than “how Dad’s daughter actually is”. Sometimes things can seem worse than they actually are. I know you know her a lot better than I ever will…I’m just hoping that maybe I can give you a little more hope once in a while.

    Blessings to all, and love especially to Jani,

    Becky

    🙂

    Note from Michael: Definitely. She is also getting better, learning to manage her illness, and returning to the happy child she once was. I think what I was trying to say is that it was (and is) still hard work. She still requires constant stimulation. But yes, she can (now) experience happiness again.

  39. A little change can go a long way…..
    Hi,

    To all out there in usa needing help, here are three things we in europe use to bring soul,body and mind to a healthier place.

    Note from Michael: I deleted the three things because I will not allow my site to be a place to share untested “remedies” without any scientific support.

    Now back to Kirsten….

    With the first two I healed my UC which was with me for years. And with the gerson therapy a friend has turned his cancer around.

    I am not trying to sell anybody anything, I just want to make sure everybody knows there is more out there then what the pill companies are selling.

    all of the above are no profit items and drug companies try very hard to keep this information away from the public.

    I hope this will help people as it has help me and my friends and family.

    Good luck to all

    K

  40. Comment from Damiso
    I agree with you Damiso. My prayer is that Mike would reconsider your help. In the meantime, know that I will be praying and standing in agreement with you for Jani’s future. In addition to treatment, my prayer is that her family will introduce Jani to Jesus and allow Him to work in her life.

    Note from Michael: Kim you keep making assumptions about us simply because I am not ramming my faith down the throat of others. You don’t know what I believe and what I have taught Jani. Jani knows about Jesus. She knows about God. I realize you need to see the world as black and white for your own sanity but please just leave us alone.

  41. thanks!
    Hey,

    My name is Stephanie. I’m 17 years old, I live near Boston, and I bear the diagnosis of Bipolar I. I also have some sensory problems. I just wanted to thank you, Schofield family, for sharing your story! I saw y’all on discovery health, and I can’t even tell you how relieving it was to see another family going thorugh it. Seeing Jani and Bodhi (is that his name?)was really neat for me… brought back memmories of my sister and I. My prayers are with you all. I pray that Jani will continue to be full of creativity and exuberence, but also peace. Thanks again for sharing your story, it’s really helpd open our eyes to other families out there!

    Much love from Boston!

    Stephanie

  42. damiso
    yes… you are the only one who thinks that she and her friend Becca are possesed rather than have a mental illness. How can demonic possesion be more likely to happen that Schizophrenia?…I can’t believe that you would even go on this website and say something like that to these great parents. I think YOU need to go get checked out for what you call “demonic possesion”.
    -goodbye.

  43. Progress
    I, like most people here, was intrigued and amazed by your story. As I read through the updates, I am glad to hear Jani is making progress to allow herself to be a child. I can only imagine the constant and tiring thoughts that plague her. While I have not dealt with any mental illness myself, I find it hard to identify with your daughter, but do hope that she can find some peace from the disease. I have a long musical background, and wonder if you have tried to introduce Jani to musical instruments. I understand there may be a focus issue here, but music played, even in short duration, has been shown to awaken parts of our brains that cannot be stimulated any other way. Its just my two cents, but I wanted to share. Thanks for opening up your lives to us, and allowing us to see what great people you all are. Best wishes.

    Note from Michael: Yes, music is beneficial. It is another thing that makes the hallucinations go away for awhile. Jani needs her music playing whenever we are in the car. At home I am slowly teaching her piano (although like you said, focus issues make it hard). Jani does like to write songs and has written a few during music therapy at UCLA.

  44. I just wanted to say that I have been inspired by your story. My son has had severe behavioral problems practically his entire life. He has had problems sleeping since the day he was born (he was awake for 12 after being born). We took him to the first therapist when he was 3, after he cut his uncles head open with a toy and laughed about it. The response was pretty much boys will be boys.
    We took him to another counselor after he was kicked out of headstart and preschool. They said he was just hyperactive.
    No one wanted to help us. He was becoming physically abusive toward my two younger children, my husband, and myself. He hit me with an extension cord, punched his dad in the face while he was driving, shoved his baby sister’s head into the wall(she was 2 at the time & 4 yrs younger than him, and tried to choke my other daughter, who was 3 (3yrs younger).
    Everyone we talked to recommended that we buy this book or that book, so we bought them and read them. We implemented their ideas and they didn’t work. My son is almost 9 yrs old and I have no control over him. He is very smart, but he cannot control himself. He has been on over 10 differnet medications, some in adult dosages in the past 4 years, but none of them seem to work for long.
    The diagnosis has changed just as often as the medications. First it was autism, then bipolar disorder, then ADHD, then ODD, then OCD, and now ADHD, ODD, & OCD.
    I just hope that I will find a treatment plan that will work for him, like you have with Jani.
    Thanks for geting the word out there about childhood mental illness.

    Note from Michael: Denise, your story is more common than you know. You are not alone. Please consider joining our private online support group. There are 140 other families going through exactly what you are going through. Here is the link: http://health.groups.yahoo.com/group/parental-support/

  45. Childhood Mental Illness
    Dear Michael & Susan, Jani & Bodi: You are my inspiration during dark times. I follow Jani’s story and am impressed with all your efforts to help each other out. I know it is far from easy. Secretly I wish that I had parents like you. I know schizophrenia is not caused by child abuse, and this does not apply to Jani, but dissociative and trauma disorders are higher amongst adult hospitalized psychiatric patients than the general public. I have a dissociative symptoms AND psychotic depression. I know what it is like to hear things that others do not. It is all very scary. Medication IS a life saver !!! :'(
    Please, everyone donate to help kids like Jani.

  46. Hi Schofield family!
    I saw your story on discovery health a few weeks ago and was truly touched. I have been living with epilepsy and as a result bipolar disorder for years. Although not comparable to schizophrenia, I understand what its like to not have control over your mind or body and also what happens when medication, doctors, and even supposed support systems don’t come through for you. Now in medical school myself, I find that every mind is different and that none are wrong. Jani is a truly remarkable young girl and your family is inspirational. I hope that nothing but good things come to you in your journey.
    God Bless

  47. Youre my inspiration
    My name is Ally, and i am 16 years old. I never knew what i wanted to be when i grew up until i watched “Born with Schizophrenia, January’s Story” on Discovery Health Channel. From then on, i was sure of what i wanted to do. I wanted to help not only children, but all people in the same condition as January. I began reading anything i could get my hands on. I took the highest level Psychology course my high school had to offer. Wanting to learn more about Schizophrenia, wanting to be on my way to help people just like January. I must complement Michael and Susan as well, your courage to “Keep on trucking on” as we say in Alabama, is inspiring. I was also having trouble with my grades, barely managing to make above D’s. Since watching the documentary on January, seeing what i wanted to be when i grew up, my grades shot up. There are no longer any D’s on my report card. And my favorite subject is Psychology. Not only did i want to be a psychologist, i want to go to the next level, i want to be a Psychiatrist. A doctor, just like many of the ones that January has seen. So in this message i am requesting that if there is EVER anyway i can meet January, PLEASE contact me. It would mean the absolute world to me.
    Love and Care Always,
    Ally
    16 years old
    Alabama.

    P.S. I understand how big this request is, and if it cannot be fulfilled, i TOTALLY understand and will not be upset 🙂

    Note from Michael: If you ever come to the Los Angeles area, send me an email at michaeljohnschofield@me.com. That is probably more realistic than us making it to Alabama. Jani really can’t travel.

  48. Thanks for sharing your story.
    Dear Michael and Susan,

    Thank you so much for sharing yours and Jani’s story. I can’t stop thinking about your strength and the strength of your beautiful daughter.

    I lived for 10 years with an ex-boyfriend who had bipolar disorder, Tourette syndrome, OCD, and possibly schizophrenia, he would not go back to the doctor for further diagnosis and would not stay on his medication. This was such a stressful and exhausting time for me but I saw how much more difficult it was for him to have to deal with especially with no medical guidance and complete denial of his illness by his family.

    Anyway, I wish you all continued strength and lots of happiness as well.

    DW

    Note from Michael: Thank you. Do you know how your ex is doing now? It is hard if the person and their family will not face the truth of mental illness.

  49. You are amazing in Germany, too
    Hey

    I saw a report about Jani on the Oprah Winfrey Show and I also have to tell you how amazing you are. Its really really important to show, how you and your daughter live because to many people don’t know anything about this illness. I really wish you the best and I hope you have enough help to manage your life.
    Dont give up!!!

    Greetings from Germany

  50. Hi
    I have a child with autism.. they really do have their moments.;) There have been a couple of times myself & my family have wondered whether my child has a psychiatric illness of some description developing. She is ten years old, rotten sleeper, convinced that mermaids live in all bodies of water and at one point she chased an imaginary rabbit down the street – in the night time. She’s erratic, unpredictable, and anxious. Her IQ is untestable.. no doubt the “experts” would simply put it down to autism.

    Also, Michael, do you have a book for sale? (I’m sure I saw one.. unless I’m imagining it).

    I hope your little girl is well.. I think of your family. I know how hard it is for me & can’t begin to imagine what it’s like for you. I also think your advocacy work is incredible, and wonder how you can possibly find time to fit it all in. I am lucky.. I live in Australia and the services are wonderful here. I wish all of you had access to the services that I do.

    Note from Michael: Not yet (re book). My book won’t be out until Spring 2012 ( or fall for you ) at the earliest. I also wanted to put out an invitation to our private online support group for parents of mentally ill and/or autistic spectrum children. We do have a few other Aussie members. Here is the link: http://health.groups.yahoo.com/group/parental-support/

  51. The schofields are amazing
    Thank you for sharing your story. You are so brave and obviously love each other so much. I am humbled by thinking my small contribution can help.

    AMAZING are the Schofields!

  52. the answer youve been looking for..
    Hi my name is Alexa. Im 19 years old and Im a preschool teacher. I was watching TV and happened to come accross your daughter’s show “Born with Schizophrenia, January’s Story.” I work with kids everyday and have a passion for them. That’s why, when i saw your daughter’s story, it broke my heart. Your daughter is a beautiful, intelligent bright little girl and she doesnt need to suffer anymore. Im not just saying this because I think she can be healed, I know she can be healed. I can see that you guys are wonderful parents as well and only want the best for your child. Thats why i am here to tell you this, so neither of you have to suffer anymore. Youre probably not going to believe me when I say this, but thats ok, i thought it was kinda crazy at first until I personally experienced it in Costa Rica, 2 years ago.

    2 years ago I was on a missions trip to Costa Rica. During worship one night, something unusual happened that changed the rest of my life forever. Amber, a close friend of mine, was having really bad stomach pains and decided to go back to the room because she wasnt feeling good. None of us thought a whole lot about it and proceded with the rest of the service. Afterwards, us girls went back to the room and what we saw left us frightened. There, lay my dear friend, Amber, shaking uncontrollably on the bed and unable to respond to any of us. Panicked, we all started praying and singing, everything we could think of, but nothing was working. The only thing left to do was get our youth pastor. So finally, after all our attempts had failed, our pastor came in and we laid hands on Amber. He started praying and immediately, after the prayer was over, the shaking stopped. Physically exhausted, Amber sat up and started crying. “I was trying to talk, but I just couldnt.” was all she could manage to say. “What just happened?” I thought to myself. “My dear friend Amber was attacked by satan, that’s what happened.” Amber, along with many others in this world, was a victim of satan’s physical attack. Everyday, each one of us is mentally or physically tempted in someway, by satan, but through Jesus Christ or Lord, we have the power and authority to say “No.” If we dont say “No” we can open a door for satan to come in and grab a foothold on our lives.

    Since then, a number of friends have opened up to me about different spiritual attacks. From a friend who tried to stop her brother from jumping out of their house, but couldnt. Her brother gave in to satan’s temptation. Miracuasly, he survived the jump and lives to be an inspiration to many today. Another friend woke up in the middle of the night, and was being choked. He started praying and it immediately stopped. These are only a few of the many examples I have of Christ’s power in my friends’ lives.

    Now, I know youre probably thinking to yourself, what does any of this have to do with my daughter? Well, as crazy as this sounds, your daughter is being attacked by satan as well. The world of spiritual warfare is real and not something to mess with. Whether you believe that or not, is up to you. Its not something to be afraid of though, because the power of God and prayer is so much greater than anything satan can ever do. I know this contradicts everything that the doctor’s say but no amount of drugs, or phychatrists will ever cure your daughter, it will only make things worse. I appologize if I have offended anyone, because thats not why Im here, and i dont blame you if you think Im totally bizarre. Im simply here to give you that one answer you wish you had. I sincerely believe that if you take ahold of the that one answer youve been looking for and have faith that God can heal, He will. Matthew 18:20 says, “For where two or three come together in my name, there am I with them.” and Matthew 21:22 says, “If you believe, you will receive whatever you ask for in prayer.”

    God laid it on my heart to share this information with you, and whatever you do with it is up to you. I pray that in the name of Jesus your daughter will be healed, for both your sake and hers. You guys deserve the kind of life God has planned for you, and that is freedom from any burden youre bearing or any lie that satan wants to believe. God bless you in your journey. Im thinking and praying for you guys.

    Love, your sister in Christ,
    Alexa 🙂

    Note from Michael: Why didn’t occur to any of you to take your friend to a hospital? I have touched on this topic before. You call it satanic attacks. I call it mental illness. Basically, it is same thing. However, it is arrogance to assume that God does not work through doctors and parents and caregivers. I feel directed by God everyday. Miracles happen everyday, Alexa. Jani is getting better everyday. She has come a long way. I would call that a miracle.

  53. Michael and Susan, you are truly amazing people. I am awed at your ability to not only keep your family together with love and creativity in such challenging circumstances, but to also have the strength and vision and compassion and generosity to work to help other children like Jani. It’s only possible to get through this life with other people, no matter what we all face. The way you have all stayed together really touches me and is (in my opinion) the first and best thing you can do to ensure Jani’s health and happiness.

    The failings of the system and the fact that there is no easy answer breaks my heart, of course. But the path you’re on is already helping other people. It’s a testament to the power of love. (I can’t find any better words than that.)

    I wish the best for you two and Jani and Bodhi. Thank you for sharing your story.

  54. you can help schizophrenia by constantly keeping the persons mind active. like do it all day all the time ( notice why when they go in for treatment, they are fine? but once they leave they go back to being crazy??? its cause they are no longer being mentally active once they go home), after a while if you keep up the mental activity, those stimulants will take over from the ones caused by psychosis. i think the reason why they cant control themselves is cause their psychosis is causing it. if you replace the psychosis with your own stimulants ( like making them use their brain all the time), you can give them a chance to process thoughts other than the ones caused by their psychosis. i know this cause i have schizophrenia, im on a really low dose of clozapine and it is working fine for me. i found that the meds will help give you a break from your illness but they will not fix them. its like rebuilding your whole brain all over again, but this time you have a little bit of help.

    Note from Michael: You are absolutely right. This is why I think we were able to hold the schizophrenia off for the first five years of her life because she was getting constant mental stimulation. It is harder now because her need for stimulation exceeds what one person can do.

  55. First let me say hats off to both of you. Your dedication and commitment to Jani’s health is precisely what she needs. My sister has had mental health issues as long as I can remember. Doctors first told my parents she was bi-polar, then it was ADHD, then it was both as well as manic depression. Finally she was diagnosed with schizophrenia at 10 yrs old and I witnessed first hand the effect this disease can have on a child and a family. My grandmother battled schizophrenia until her passing one year ago and my uncle currently suffers from it, this disease has nearly crippled our family. Doctors told my father my sis would not live a long life and to prepare for the inevitable(as if one could!), whenever it may occur. Growing up i knew she was ill and even during one of her episodes i understood it wasn’t her fault, as frightening as those episodes were at times. Her teenage years were hellx10. In and out of the hospital constantly and on more drugs than most drug addicts could handle. My parents did what they could during that time but in the end, it was too much for my mother. They ended up separating when i was 16, sis was 17. While taxing and stressful for my father, he never gave up and eventually, as sis reached adulthood, she had actually began a slow climb to normality. Does she function like everyone else? Obviously not quite but compared to what it was growing up, it’s like night and day. Sis is now 28 years old and it’s been quite some time since the last hospital visit(thank the lord!). She has a small job, a boyfriend, an apartment and although my father does manage her finances(rent/phone/cable) at least she has been able to live a normal life for the first time ever. I understand there will be relapses but it seems the worst is finally behind us. Keep up the dedication and commitment, it will be worth it, Jani’s worth it. Thanks.

    Note from Michael: Thank you for sharing. Don’t think of them as “relapses.” Think of it as managing a long term illness like diabetes. Sometimes, everybody needs a “reset.”

  56. Truly Inspirational.
    Hi Michael and Susan,

    I saw the last part of an epsiode on the Learning Channel entitled “Born Schizophrenic” which was the story of Jani. I was so enthralled with what I saw I had to find your site. You and Susan are truly amazing parents to have done the advocating you have for Jani. I work the in the MH field, and found Jani’s story to be very unique. Keep up the great work, and continue the adovcating. I am glad you have managed to find other families who have had the same struggles, you can’t do it alone. I will continue to look for updates on Jani’s progress.

  57. you opened my eye toward childhood onset schizophrenic
    I watched the most part of ‘Born Schizophrenic’ two nights ago. I learned a lot about schizoprenic. Before I watched your story, I always thought schizophrenic was developed later in a person’s life due to bad experience they had. The word “BORN[u][/u] Schizophrenic” caught my attention and my curiousity got better of me. I decided to watch it. WOW. The story is very good and I learned a great deal.

    By the way, I was born DEAF and I have no mental illness but Jani’s experience reminded me of myself being only deaf person in the hearing world. I prefer to be around deaf people and I get impression that Jani seems to feel comfortable being around other children who have same mental illness.

    Thank you for allowing us to watch your story.

    Portia

  58. Your story brings me to tears, my family has been strugglin with our daughter and her behavior for 9 long, expensive, isolating and painful years. There is such beauty in her, yet such angst. Thank you for sharing your story, and how can I become a member of this community?
    Kara, mother of Caroline, numerous diagnoses, numerous medications, still struggling…

    Note from Michael: Kara, I see you found the group and one of our moderators added you. Welcome!

  59. Love you, Jani!
    Hi Jani!
    I know you’re suffer Schitzophrenic [removed]void(0);
    You change my life, Jani!
    You make me conscious, if life is so good [removed]void(0);
    Thanks, Janij [/s]avascript:void(0);
    I love you.. [removed]void(0);

    Love you, angel

  60. Michael – Like other posters, I’ve also spent a couple of hours watching videos and reading your blog. I feel your struggle and truly appreciate your advocacy work. If you put as much tenacity in your cause as you do in your parenting, we will be reading about the community soon enough. Keep up the amazing work – your family is inspirational.

  61. I am a social work grad student interning at a school for kids with emotional disturbances, mental illness, and intellectual disabilities. (we’re the step just before full locked residential.) I am so sorry that California and my professional peers have failed you.

    I just stumbled upon your story and have not had the opportunity to read your website deeply, so I apologize if I am just suggesting services that have failed you. Have you tried accessing services through the IEP process? That’s how many of our kids access occupational therapy, speech therapy, counseling, etc. Furthermore, some of our more “staff intensive” kids have state-provided educational aides. The state is legally required to provide its kids with a free and appropriate public education, even if that means OT and an aide and a private school. Also, you can bring whoever you want to IEP meetings and the like, including other people who work with Jani. Furthermore, there are social workers and psychologists and lawyers who work as educational advocates for families like yours, forcing the state to provide what it’s legally required to provide.

    On that note, so you work with any social workers in general? Social workers tend to be more community-minded than psychologists and psychiatrists, and therefore are much more likely to do things like help connect you with services, help you fight for services, etc. I wonder if there’s a way of getting a social worker helping you with case management.

    You also might want to look into seeing if you can work with social work students at nearby colleges. They might be more equipped to take risks.

    I take it you’ve been denied respite care, which is criminal. I also thought I read somewhere that your son gets services, perhaps through early intervention? Have you thought of asking his service providers or case manager what happens when he ages out? Maybe there’s something available there.

    Have you thought about working with Jani’s doctors to add a development disoder, NOS to her diagnosis, just to help you qualify for treatment? It’s a nasty secret that sometimes you have to diagnose incorrectly in order to get the person the proper medical care. Our healthcare system is such bullshit.

  62. (I hope the first part of my comment posted; my iPad is acting weird when I try to post and I don’t see the comment.)

    Oh! I don’t know much about California’s rules on seclusion and restraint, but there has been some federal movement to finally regulate them, thank God. Be sure you know the regulations when she’s hospitalized. If she’s given thorazine or any kind of drug to sedate her during a crisis (“chemical restraint”), don’t let them also leave her alone or keep her restrained, especially with something other than their bodies (“mechanical restraint”). Prone (facedown) restraint is also bad. There have been cases of children rolled up in rugs, shot with thorazine, and dumped in seclusion rooms to die. Google “Keeping Our Students Safe.” the National Disability Rights Network wrote some pretty powerful reports on how we care for our mentally ill kids when they get violent.

    I wish i could do something to help. Jani seems like such a wonderful little girl, and you are awe-inspiring parents. I wish all of my kids had parents as dedicated and loving as you. (Sadly, plenty of my kids are in the foster care, and most of their families are not involved and do not stay in touch, even though they are local. I don’t mean that as a knock against parents of mentally ill children, it’s just a feature of the location of the school. Most of our kids are from the worst areas of downtown Baltimore and DC.) Also,I absolutely LOVE your goals, especially the idea of a mental health community for families to live in and support each other. If only we had actually created real community services for the mentally ill when we deinstitutionalized all those years ago! We are failing our mentally ill and their families, and it is unethical and inhumane.

    Good luck!

  63. Corrections
    Sorry, I was slightly off on the title of the act. Try googling “Keeping All Students Safe.” It was sponsored by Rep George Miller and Rep Cathy McMorris Rodgers. The latter, actually, has a son with Downs. You might want to try contacting her for help. Also, you could try contacting your representatives in Washington and the state house for help. I don’t know if it’ll work, especially with the problems California’s having, but it’s something.

    Good luck, again!

  64. Some hope for the future …
    I watched your and Jani’s story on Discovery Health last night. As a parent I was moved by your story … particularly the way in which you as parents handled your living arrangements to best suit both of your children. I hope you never feel like “why me” because it is clear that Jani got the parents she needed.

    I’m sure there are many families and individuals with this illness who are grateful for your opening your home and life to educate others about this disorder.

    “A Beautiful Mind” kept coming back to me after watching the show. As an adult John Nash was able to achieve great things despite his ongoing struggles with schizophrenia.

    You’ve probably seen this material, but I wanted to share the information on Elyn Saks just in case you hadn’t … Hopefully this could provide a glimpse of a possible positive direction for Jani’s (and your family’s) future!

    [url]http://highability.org/61/high-ability-and-schizophrenia/[/url]

    Note from Michael: Thank you. Actually, we are good friends with Ellyn. We were able to meet her during the shooting of the Discovery Health piece. She is indeed a hero to us who inspires us.

  65. Ellen Williams said…
    You need to have your daughter tested for the MTHFR Gene. It is a simple blood test that can be done at any lab. I prefer Lab Corp.

    MTHFR function causes the inability of the body to convert homo cysteine to the methionine synthase pathway for the end result of our bodies manufacturing glutathione. Since a person can have either the A12098 and T677C or 1-4 copies of the t677C our bodies cannot process the metals, and when you add mercury and aluminum via vaccinations ( both neuro toxins your resut is heavy metal poisoning. Of course this goes hand in hand with the addition of the Hep B shot and HIB shot added to the pediatric vaccine schedule in 1991 increasing the amount of thimerosal exposure in the first 18 months of life by 300%. January should be tested for the MTHFR Gene and then tested for Mercury poisoning via an urinary porphyrin profile. If you google MTHFR Gene and schizophrenia you will see that her body is not methylating toxins! My 2 sons and myself have all tested positvie for the MTHFR Gene A12098 and T677C. The A12098 is the genetic snip that causes the mental illness such as Depression, BiPolar and schizophrenia. There are 2 doctores in Richland Washington that can help you understand this more in depth. Dr. Neil Rawlins and Dr. Steven Smith. If you google both you can contact them and they can help you with your daughter. If you listen to this you will find that your daughter does NOT have to live this life. I know because after having my myself and children tested it has changed our lives dramatically! I hope God will speak to your heart to take this journey because it will change your daugthers life!

    This is my 3rd attempt at trying to talk with you about this subject. Everytime I watch your daughters story I am compelled to try and get in touch with you so I can give you this information that could save your beautiful little girl!

    Please contact me at 314-651-2700 if I can be of more help to January and your family!

    February 11, 2011 3:25 PM
    Ellen Williams said…
    Please see the website below is for the office of Dr. Steven Smith. Dr. Smith has been treating people for over 20 years with MTHFR.

    http://www.nwhealthcare.net/index.php?id=40

    The website will show a report titled MTHFR. At the bottom of this page will be a video series of Dr. Rawlins and he will explain his sons depression and how he found out about MTHFR being the problem. I hope you can find time to watch Dr. Rawlins video lectures. This could change your daughters life!

    February 11, 2011 3:30 PM
    Ellen Williams said…
    If you look at the website that I listed above please click on the title “MTHFR RELATED MEDICAL CONDITIONS”. A grid will show up please scroll to the left of the screen and you will see that it lists schizophrenia as on of the diseases that MTHFR causes.

    February 11, 2011 3:38 PM

    Post a Comment

    Newer Post Older Post Home
    Subscribe to: Post Comments (Atom)

    Note from Michael: It is always a possibility but Jani was different from birth, long before she was vaccinated. Nor did she get dramatically worse after vaccination. But thank you for the information. We are not in a position to travel the Washington DC area. We have neither the money and Jani can’t travel for safety reasons.

  66. THIS INFORMATION COULD CHANGE YOUR CHILDREN’S LIVES
    I posted these comments on a different website regarding your daughter. I then found the your website and copied my messages that I sent to you on the other website. I hope you will open your mind to another way of thinking about your daughters health. I am so glad I did because knowing about this has taken a yoke off my family.

    3 comments:

    Ellen Williams said…
    I strongly suggest that you have your daughter tested for the MTHFR Gene. It is a simple blood test that can be done at any lab. I prefer Lab Corp. If she tests positive for any of the A12098 and/ or the T677C then you should have everyone in the family tested.

    MTHFR function causes the inability of the body to convert homo cysteine to the methionine synthase pathway for the end result of our bodies manufacturing glutathione. Since a person can have either the A12098 and T677C or 1-4 copies of the t677C our bodies cannot process the metals, and when you add mercury and aluminum via vaccinations ( both neuro toxins your resut is heavy metal poisoning. Of course this goes hand in hand with the addition of the Hep B shot and HIB shot added to the pediatric vaccine schedule in 1991 increasing the amount of thimerosal exposure in the first 18 months of life by 300%. January should be tested for the MTHFR Gene and then tested for Mercury poisoning via an urinary porphyrin profile. If you google MTHFR Gene and schizophrenia you will see that her body is not methylating toxins! My 2 sons and myself have all tested positvie for the MTHFR Gene A12098 and T677C. The A12098 is the genetic snip that causes the mental illness such as Depression, BiPolar and schizophrenia. There are 2 doctores in Richland Washington that can help you understand this more in depth. Dr. Neil Rawlins and Dr. Steven Smith. If you google both you can contact them and they can help you with your daughter. If you listen to this you will find that your daughter does NOT have to live this life. I know because after having my myself and children tested it has changed our lives dramatically! I hope God will speak to your heart to take this journey because it will change your daugthers life!

    This is my 3rd attempt at trying to talk with you about this subject. Everytime I watch your daughters story I am compelled to try and get in touch with you so I can give you this information that could save your beautiful little girl!

    Please contact me at 314-651-2700 if I can be of more help to January and your family!

    February 11, 2011 3:25 PM

    Ellen Williams said…
    Please see the website below is for the office of Dr. Stephen Smith. Dr. Smith has been treating people for over 20 years with MTHFR.

    http://www.nwhealthcare.net/index.php?id=40

    The website will show a report titled MTHFR. At the bottom of this page will be a video series of Dr. Rawlins and he will explain his sons depression and how he found out about MTHFR being the problem. I hope you can find time to watch Dr. Rawlins video lectures. This could change your daughters life!

    February 11, 2011 3:30 PM

    Ellen Williams said…
    If you look at the website that I listed above please click on the title “MTHFR RELATED MEDICAL CONDITIONS”. A grid will show up please scroll to the left of the screen and you will see that it lists schizophrenia as on of the diseases that MTHFR causes.

    February 11, 2011 3:38 PM

  67. thanks
    I’m so impressed by your resilience as parents and as a family. My younger brother has schizophrenia, and while he wasn’t diagnosed until he was 19, the diagnosis explained a lot about his behavior in the preceding years. It is a great comfort to know that there are others out there struggling with the same challenges. You have a truly extraordinary child who is living an extraordinary life, one that has already taught a lot of people about the importance of re-evaluating what they think they know about mental illness and human difference in general. I wish you the very best, and as she gets older, it seems Jani’s remarkable intelligence will only be an asset in her fight against her disease. There have been such immense improvements in the treatment of mental illness in the last twenty years, it seems likely that science will only continue to make vast leaps in the field. In short: there is hope, and in her own way, Jani is already leading an exceptional life. As Shakespeare wrote, “Be not afraid of greatness: some are born great, some achieve greatness, and some have greatness thrust upon them.” There is no question that Jani’s life is an example of all three.

  68. poor jani will never be normal

    Note from Michael: Ah, okay? Not sure what your point is. You are the one dooming her, not me.

  69. Your story is an inspiration for my personal and creative stories!
    Hello!

    I was diagnosed with schizophrenia when I was in my early teens (I am nineteen years old now), and was fairly-recently re-diagnosed with schizoaffective disorder (bipolar-subtype). I was diagnosed with depression when I was young (around ten); and looking back now, I probably showed signs of bipolar then, too. That’s my personal story. I would like to inform you that your (yours, your wife’s, and Jani’s) story has helped in the generation of ideas in my creative story — which I hope to turn into a novel. (It’s merely in the planning stages now, but I hope to make it a reality soon.) It’s about people with mental illnesses — and their experiences: stigmas caused by the illness itself, prejudice from those lacking understanding and sympathy, and relationships with those whom they love. I want to show them as real people: with hopes, dreams, and aspirations; not “lunatics” as is prevalent in popular media.

    The primary source of “ideas” I receive from Jani’s story come directly from the inspirational struggle and strength of your family. The events — exactly what happened to her, your problems with the mental-health-care system, etc. — also come as a great source of ideas for my story.

    I’m very happy that you are doing what you are doing — it’s inspiring me on a personal level, in addition to creative. I pray for the best of your family and all those afflicted with mental illnesses.

    And my story is titled New Advent! If you see novel sitting on the best seller’s shelf at your local bookstore with that name (haha), you’ll know that it’s the one I’m writing!

  70. I read the LA Times piece and watched the video available. Jani is beautiful and so precious. Michael, you and your wife are an inperation to all parents. I grew up with my mother who was diagnosed as bi polar and schizophrenic. Talking to her childhood friends I hear that when they look back, they could see the signs since she was very young. At that time they just thought she was ‘artistic’. The medicines have really helped in more of the recent years. We went through almost 20 years where we didnt think anything would help. But in just the last 5 years, we have had major success in treatment. So there may be days, months and even years of distress and it can get hard to see the light at the end of the tunnel, but it will come. Jani is so precious, and SO smart, she is an inspiration. I can’t imagine the struggle she goes through everyday. The story made me cry, but seeing the attention she is brining to this illness, feels me with hope. Please keep us updated. I look forward to future posts. Thanks, Shannon

  71. I commend you both for the dedication and love you have for your children. Your ingenuity for how to deal with your daughters medical condition by getting to separate apartments was so smart. You both obviously love your children and each other so much I wish you continued support and hope new advances in medical treatment for schizophrenia continue to emerge. Shame on anyone who judges you or your family for how you choose to live your life. You are amazing parents.

  72. I have high hopes for the future, and I think that in the future, we will have a cure for every illness and disease. ~ I hope this will be the first illness to be cured.

    Just to make you know, that when my niece was young, she would be talking to her stuffed toys, and imaginary characters. ~ We took her to the doctor and they said that she was okay, and that nothing was wrong. ~ So we waited awhile and I realized that she stopped talking to her imaginary characters…

    I think that if she keeps talking to imaginary characters after she turns 13 or 16, then the doctors where correct that she is Schizophrenia. ~ Only time will tell if she will grow out of it…

    And again, I have high hopes for a cure for this.

    XOXOXOXOXO

  73. INSPIRING AND HEARTBREAKING
    Dear Michael and Susan,
    Your family is nothing short of amazing!! It just goes to prove that whatever the hurdle, mental illness or anything else, can be overcome with love, compassion, and understanding. That the support of family is the most important thing in the world. I can only imagine how what you have to go through on a daily basis takes a huge amount of patience, perserverance, etc. People complain about the most simple things in life and do not realize how great they have it. Your family seems to have overcome that kind of thinking, even under the most difficult of circumstances. I’m sure you struggle every day, but still Jani or Bodhi never have to wonder about whether their parents love them. I praise you for doing all you can for your daughter, and not trying to pawn her off on somebody else. Your love for her is truly heartwarming. Please don’t listen to all the people who claim that you are failing her by using medications or that you should have done something else. I doubt they have any clue what you have tried or are going through. People love to judge, and it’s DISGUSTING!
    I hope Jani grows to live a life full of happiness, love, and sense of accomplishment (even though she accomplishes more on a daily basis than we can even fathom). I hope she is always aware of the love she is surrounded by. I hope that your family is able to find the kind of help that society should be working hard to provide. I hope you have a strong support system and people you can turn to for help. I hope someone finds a cure for this horrible illness!
    Sorry this is so long!! haha Love, Andrea

  74. question re: group home care
    First, let me say that your family and your story is very inspiring.

    My question pertains to your lack of interest in a “group home” scenario; why wouldn’t/couldn’t you and families of similar diagnoses all chip in for a group home (or apartment) that you, the parents (not the government), would administer? You could pool your resources with a few other families, and take turns taking care of the children? That way, you can determine ways to still integrate Jani, et. al., into society, you could still have as much interaction with her as you want, but still be able to give yourselves a little more financial and emotional freedom?

    I hope you don’t take offense at this suggestion…I’m just trying to think of ways to make your situation a little more sustainable. I can see how the two-apartment solution is close to ideal, but I don’t know a lot of families who could afford to do that for very long.

    Regardless, may G-d give you strength. You’ll need it to deal with the people on this blog who are suggesting demonic possession (they belong in Salem, Mass., circa 1700)!!!

    Note from Michael: Not offended at all. In fact, that is exactly what we would like to do. We just can’t do it now because we are all tapped out financially (there is not a single family that we know with a mentally ill child who is not struggling to keep the lights on or food on the table). But that is our eventual goal.

  75. praying for you
    Just want to say, our family prays regularly for yours. I hope that someday we would be able to help you out financially. My husband has a new job and I hope we can begin donating soon. My cousin is schizophrenic and I have lost touch with her (her illness makes her avoid me) although we used to be close. Its been very heartbreaking, I can only hope she regains contact with me at some point. Yes pooling resources is a good idea, but first you need to create that pool of resources. Im praying that you will get some rather large donations. My husband and I belong to a plain Mennonite church (my husband was raised there but I was not) where church members can fill in the gaps for treatment. Our church fully sponsored one girl’s treatment at a special camp (she is possibly schizophrenic, still not an offical diagnosis that I know of). We would never let someone in our church go without food on the table. But I wish this extended out to other people. Glad to hear you believe in the power of prayer, now I feel comfortable telling you we are praying for you and Jani. Sad to read of people comparing Jani’s schizophrenia to demon possession. Lack of education on mental illness perpetuates the myth that mental illness is a product of the spiritual world.

  76. praying for you
    Just want to say, our family prays regularly for yours. I hope that someday we would be able to help you out financially. My husband has a new job and I hope we can begin donating soon. My cousin is schizophrenic and I have lost touch with her (her illness makes her avoid me) although we used to be close. Its been very heartbreaking, I can only hope she regains contact with me at some point. Yes pooling resources is a good idea, but first you need to create that pool of resources. Im praying that you will get some rather large donations. My husband and I belong to a plain Mennonite church (my husband was raised there but I was not) where church members can fill in the gaps for treatment. Our church fully sponsored one girl’s treatment at a special camp (she is possibly schizophrenic, still not an offical diagnosis that I know of). We would never let someone in our church go without food on the table. But I wish this extended out to other people. Glad to hear you believe in the power of prayer, now I feel comfortable telling you we are praying for you and Jani. Sad to read of people comparing Jani’s schizophrenia to demon possession. Lack of education on mental illness perpetuates the myth that mental illness is a product of the spiritual world.

  77. Hey Michael
    Michael,

    I came across a video about Jani on youtube, and I can tell you that I am truly deeply sorry for what her life has entailed. I’m not speaking about the disease of schizophrenia, however. I’m talking about her struggle through childhood with a mentally ill father. After watching Jani’s video on youtube, I stopped by your website and read a few of your blog entries. As a healthcare professional, I have interacted with patients with a wide variety of psychiatric disorders. While it is unfortunate that Jani has had such a rough journey through her first years of life, I am confident in attributing the majority of her struggle to your atrocious parenting, your narcissistic/sociopathic character, and your uncanny ability to utilize the struggle of your children for financial gain. As an individual with experience developing and maintaining websites, I found it almost comical that your website included Google AdSense ads, paypal donation links, etc. I think that perhaps it is time for you to undergo a psychological evaluation. I’m sure that you’re familiar with mental disorders, as you’ve contributed largely to the development of the schizophreniform characteristics your daughter now exhibits. Maybe by utilizing that preparation, you can delve into your own mental disorders. Here is a link to get you started: http://en.wikipedia.org/wiki/Antisocial_personality_disorder. I hope that you go bankrupt and are forced to live on the streets, and that you burn to a crisp in the deepest realm of hell. As for your beautiful and unfortunate daughter, I hope that child protective services can find her the help that she truly deserves. Fuck you.

    P.S. If you’re curious to see how a real father deals with his child’s disability, watch the movie Lorenzo’s Oil.

    – Will

  78. Cancer DOES NOT come from genetics!
    Yes cancer can be encouraged by genetics, but it does not cause it. Just like an individual may be more prone to alcoholism because of a genetic predisposition but it doesn’t mean that this person will indeed become an alcoholic. Cancer is the same. Cancer has everything to do with nutrition and chemical exposure. It is true that some people smoke and don’t get cancer. This means that every individual is different and is effected by everything differently. Modern medicine is not going to cure your daughter and neither will your doctors if they have not tried nutritional therapy. Modern medicine treats symptoms, not causes! Why? Because they DO NOT FULLY UNDERSTAND HOW THE HUMAN BODY WORKS, plus they look at individual parts instead of looking at them as a whole entity. We cannot function without proper vitamins and nutrients…think about it! In the 60’s they said they were close to curing cancer and it is now DOUBLED or even tripled…its called big business. Read the toxicity articles from the US government that says the pesticides in food “MAY” cause cancer! And these are the people you trust?! Watch the documentary FOODMATTERS! I really do feel sorry for your family and your daughter. I will pray for your entire family and I hope that recovery will find her. God Bless!

  79. I see your story and it breaks my heart. Please check out this book, you may find some information in there to be very helpful to you and your family. I have found much relief in my mental illness by implementing some of the changes in this book. The book is called “Yeast Syndrome” by John Parks Trowbridge M.D. (I found the best deal on the book at half.com for 75 cents used :))
    I am not selling anything, just a person who has been very touched by your story as I have had suffered from many mental problems in the past.
    Best of luck to your family.
    –Stephanie

  80. anything i could possibly say has already been said, probably better than i can say it.
    are you in los angeles? if you are, maybe i could offer a skill that may be helpful.
    i am a muralist/ artist. i wonder if a mural would be calming or helpful to the children affected by this disorder.
    i would be happy to volunteer my time, as well as the supplies to paint a mural for your daughter, or a mural for a place in the hospital for all of the kids who experience this disorder. it’s all i can think of for any way to offer support.
    let me know if you are interested.
    best,
    alyssa

  81. your amazing family
    I have been hearing about Jani’s story for years. I first saw her on Oprah and right away my heart hurt for her and the rest of your family. Im sure it is very hard for you guys to have to change the dreams you had for your daughter and for your family. I am sure that for a lot of people there are many connections that they feel with your life, for me the biggest connection is that I live in your community. I actually lived in the same apartment complex as you guys and there wasnt a day that went by that I didnt wish I could help you guys. I have also seen your family out in the community and I have always wanted to tell you how much I appreciate you sharing your story, but when I have seen you Jani has seemed content and I did not want to disturb or intrude. so I will tell you now, Thank You so much for sharing your story, you have opened my eyes to something that affects not only my community but the whole world. I am studying to become a teacher and what i have learned from your story that will help me in my career is that children can have the same problems as adults, and the best thing they can have is support. your story will help me in my career and when I become a parent. I wish I could help you guys financially but I am a struggling college student, but if there is ever anything else I can do to help please feel free to contact me. I hope Jani and Bodi are having a great summer:)

  82. Wow…
    I watched the documentary about January’s struggles. As a parent of a child (now 13), who has struggled for years with severe anxiety, sensory integration disorder and depression, I marvel at your fortitude. January is very lucky to have two parents who are so willing to work toward allowing her the normalcy that most of us take for granted. I have been judged by family and friends for decisions I have made regarding my daughter. I simply want my child to find a place of peace. To see the comments here…goodness, people can be so ignorant. I long for the day that none of our children have to suffer another moment. Bless you for sharing your story with others. Know that it has impacted my day in a very meaningful way.

  83. Schizophrenia
    Dear: Michael and Susan Schofield:
    I am not sure if you are aware, but based upon my observations, I strongly consider you research High Copper, Histamine, and Methylation issues with respect to your daughter. I had a family member who behaved the same way and was intellectually intelligent. I ran into a clinic called Mensah Medical (Dr’s bowman, and Mensah) Mensahmedical dot com and they literally saved his life. There is substantial research that demonstrates how high tissue copper levels (and low too) can exacerbate symptoms of schizo affective disorder. There is a great deal of hope out there, however, Western Medicine says “no.” The clinic we went to believes in supporting Western Medicine through Orthomolecular Medicine. Rather than just look at the “schizophrenia.” they look at the underlying condition. “something caused it.” Mineral deficiency, lack of something, methylation disorder, histamine levels, etc. However, the human body operates as a live organ. I hope you will take a look at the site. There are many videos; but, there is so much hope out there. You do not need to consider this disease the “end all.” Nor make your daughter suffer a life institutionalized.

  84. I see that many people are giving opinions and advice here and I know it must be a little frustrating when they have no idea what you are really going through. I feel a little strange sending this message but here goes. Jani may have had genetic testing that confirms her diagnosis so this may be irrelevant.

    I have a son who had very similar symptoms to your daughter. He was diagnosed with autism until recently when it was discovered that he has Lyme Disease. The disease can effect many parts of the brain and can therefore contribute to a variety of neurological symptoms. I know it is a controversial subject but I believe that infectious disease is a cause of symptoms for many people who are diagnosed with mental illness. When I watched the video of your daughter and she was asking to be saved it sounded just like my son. He used to tell me that he was not meant for this world and it killed me. The look in her eyes is so similar.

    I watched my son’s health decline as doctor after doctor told me “this is what happened to autistic children”. My son has had Lyme bacteria, mycoplasma and babesia bacteria in his body for seven years and with all the symptoms he had not one doctor suggest he be tested for Lyme Disease. He has now had six different tests and his diagnosis is confirmed. I believe it can be contracted in different way but that is another story. I just thought I should send this message. I wish someone had sent it to me seven years ago. Regardless, I wish you the best of luck. You are incredible people.

  85. I can help Jani
    What I am about to say is very real! I am very serious and this is no joke! And I do not have a religion. Jani is not schizophrenic, and she does NOT have an illness! She has the gift/ability to SEE INTO OTHER DIMENSIONS! Ghosts/spirits/Demons are very real creatures, and Jani can see, hear, and feel them. There are bad demons that are harassing her, and there are also good spirits that are friends of hers. The good ones can stay, and I might be able to help her remove the evil demons in her, it is easier than you think! I have connections that can deal with the paranormal. I do not need money, and I am not looking for money, my purpose is to only help. She needs to be taken off the medication, cause they do not work, and they do her harm! Please give me a call at (650) 630-5566, my name is Jackson. I can help her cast out the evil demons! I am not a catholic priest, I do not have a religion. I have dealt with the paranormal before. THIS IS ALL REAL!

  86. So Inspired By Your Family
    I just wanted to offer a small note of encouragement to say that I am inspired and awed by your family for working so creatively through a very tough situation. Keep doing what you’re doing. Let no one criticize. Jani is not their child…this is not their life to walk through. Your journey may be difficult and the path rocky but the rewards are great for Jani…for all of you. The love you give, and the sacrifices you are making, will not remain unnoticed. In her own way Jani will know (and so will your sweet son) how much you have loved them and how thoughtful your choices have been for your family. Be blessed.

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

  87. My God
    Michael Schofield, you need help that you have not been getting. I have read through most of your blog, and it is incredibly clear to me that you ought to feel guilty. Your abusive, aggressive behavior has triggered your daughter’s illness. You have not appeared to have gotten therapy to control yourself (presumably because you believe, on the basis of a sample of one–your daughter–that schizophrenia is purely biological; its easier for you to believe it because, and this is so transparent, it gets you off the hook). Yet its pretty clear by your black and white thinking, your rage, your suicidal threats and tendencies, and your cycle of devaluing and then overvaluing people in your life that you have borderline personality disorder. You are trapped in your head just as much as your poor daughter. And so everything has to fit into your conception of her: if she is saying no to your “command” (love how you put that), then she is psychotic. How about, there are times when she is just being a kid? It’s so easy for you to blame everything on her illness. It allows you abstention from the realization that you are a bad parent and that you have serious problems. One day, your daughter will write her own memoir. And she’ll tell her own story. I can’t wait for that day. She needs to get away from you.

  88. GOOOOOO JANI! 😀
    Good luck Jani! My great-uncle had what you have… ^___^ He still did great in life. So don’t you ever think different. ;D

    Cheyenne Tucker, 14 years old, Avid Medical Freak, Vancouver Washington.

    Note from Michael: Thanks, Cheyenne! I think Jani will do great as well.

  89. Have Faith
    Dear Schofield family,

    I wish your family the continued strength, perseverance and love to move forward always toward the light.

    I would imagine that your family must have a strong faith in God. Always remember that you are not truly alone, even though the isolation feels strong and don’t forget to ask for spiritual help when you feel like you need to be surrounded by God’s love and guidance.

    Jani is a very special little girl and I do hope that she has been baptized. It is never too late if she is not.

    If you would consider with an open mind, alternative “food for thought” please consider picking up Gabriele Amorth’s book “An Exorcist Tells His Story”.

    The book is in no way a preachy or a sensationalized Hollywood book like the movie “The Exorcist” but rather is a spiritual look as to the intent and ways that evil exists in our world.

    A child is the most precious gift we could ever receive and we must do whatever we can to protect them, even if it means researching unconventional means for ideas and help.

    May God bless your family, especially Jani.

    Thank you,

  90. Observations
    It’s interesting to me how many of these comments seem to go ahead and “diagnose” Jani with this or that or it’s because of demons or the parents. Mental illness is a very real disease, just as diabetes or arthritis. Jani’s is much more severe than most, sadly. Michael and Susan, don’t listen to those people who don’t understand mental illness. You’re doing the best you can and that’s all that can be asked of any parent. I’ve seen the Discovery show and read the blog. You have made the best of a situation that most others would run away from. And I believe you can make a difference in the way others view mental illness. Blessings be to you all.

  91. Interesting New Schizophrenia Discovery
    Hi Michael,
    I thought you’d be very interested in seeing this article recently posted on the New Scientist web-site. It involves the discovery that a certain gene mutation causes a disruption in the messages that the primary clock of the brain sends out, which in turn causes a general disruption in the time-sense of the various peripheral clocks of the body, and that this ends up possibly driving the entire biological system towards breakdown. I found it particularly interesting in light of Jani’s case because you have blogged about how from the very first she seemed to be glaringly wide awake at the oddest times. Here’s the link to the article:
    http://www.newscientist.com/article/dn21371-disrupted-body-clock-may-prime-you-for-schizophrenia.html

    Note from Michael: Thanks. I do wish there was more interest in researching mental illness in children (or adults for that matter but they are different and manifest differently). I would love to think there was a single cause but I think like so many other things there probably isn’t. I do believe mental illness is genetic but I think in all likelihood we are talking an endless possibility of genetic combinations that can trigger it. The human mind is so complex. There needs to be more research.

  92. Hi Michael and Susan.
    I saw Jani on Oprah when it first aired, i ‘m telling you i can’t get you all out of my mind you are both unbelievable parents, and jani is amazing ,she is smart, brave and BEAUTIFUL!!
    i can’t give money but i pray for god to give you what ever you need!!
    keep up the good work!! xo

    Note from Michael: Thank you, Lilly. We are doing better. More good days than bad. We are okay on money right now, thank you.

  93. This story is an inspiration.
    Hey Schofeld family-

    My name is Abby. I’m a 15 year old girl, so this probably won’t mean much. However, I found out about Jani’s story a few days ago on YouTube and I just wanted to say how amazing and incredible her story is. I can’t stop thinking about her story and recently found this website, which I cannot stop reading! It must be so hard to deal with it, and I find it amazing that your four can still stick together as a family even though her disease makes it hard. I hope that one day things will become easier for you guys, but I know that you guys think more about present day than the future. I was watching the Oprah episode, and I found it amazing when you guys said you lived for the present rather than thinking about the future. Jani woke up today. That’s whats important.

    I sort of know what its like to feel things you can’t control– I have severe anxiety and I deal with things everyday, such as my phobia and my constant worrying, that I can’t do anything about. My friends tell me all the time, “Stop worrying– everything’s going to be fine.” Or, “That’s a stupid thing to be worried about!” Or, “There isn’t anything to worry about, I promise.” And I can’t do anything to tell myself that things will be okay, or that I shouldn’t be afraid. Obviously, Jani’s story is much, much different– but it still gives me the strength to keep going even though there isn’t anything I can do to make it stop completely.

    Thanks for informing the world on this disease– I honestly didn’t know what it truly was until I read up on Jani. She is such strong and beautiful little girl and I wish the best for her and your family!

    Sincerely, Abby

    Note from Michael: Thank you, Abby. I’m not sure which appearance you just saw but all of them were a couple of years ago and things have gotten better. We still have our ups and downs but yes we are still together and are in fact back living in a single apartment. Jani has come a long way. Thank you most of all for reminding me about what I said: Jani woke up today. That is all that is important. As her illness has become more managed, I have found myself pushing and wanting more. Thank you for reminding me that what I have now is far beyond what I hoped for back then.

  94. Michael,

    Its 5am here in Florida, I cant sleep (quit smoking 6 days ago and sleep is s luxury these days), and I’ve just finished watching the show “turning points” on the OWN network. I’m still trying to take in what I’ve just watched / learned, but needless to say I am stunned and saddened to learn that mental illness in children is so common and that it can be so severe. My email address is listed above. I would like some additional details on how I might help in terms of raising awareness of this issue. Glad to hear from the above comments that your daughter is heading in the right direction, and I wish you all the blessings in the world and look forward to hearing from you.

    Note from Michael: Thank you, Jordan, and thank you for spreading the word. Just keep talking about it. Sadly, Jani is far from unique. If you go to http://www.facebook.com/janifoundation you will see so many other families also dealing with a severely mentally ill child or children. It has always existed but our children used to be hidden away from the public in institutions, but those state hospitals are now closed. This is not a bad thing but there needs to be resources to help these children live productive and happy lives in a community that understands that what they have is a biological illness, not “bad behavior.” Thanks for writing.

  95. Es hora de darle una oportunidad a un milagro
    Estimados padres:
    He visto el programa en el canal h&h desde Buenos Aires, Argentina, y desde los primeros minutos del mismo me di cuenta a simple vista de algo. Mi formación es Cristiana Evangélica, y en las iglesias a las que concurrí es muy común ver éstos casos. Desde pequeña, siendo un bebé de brazos ella veía algo que recorría su habitación, algo que solo ella podía ver, y cuando creció interactuaba con “amigos imaginarios”. Mi experiencia en la fe cristiana me dice que su niña sufre un gran ataque espiritual. Lo que ella ve nosotros los conocemos como “demonios”, y es algo mas serio de lo que parece. Desde aquí solo puedo orar por ella, pero ustedes podrían consultar en alguna Iglesia Cristiana, allí hay muy buenos Pastores que sabrán guiarlos para sacar de ella todos los demonios que la perturban.
    Dios bendiga a January y a su Familia.
    Saludos.
    Fabian.

  96. love to all of you
    Hi Michael, Susan, Jani and Bodhi,

    I’m not sure what to say. Like others have said, I just can’t get Jani and all of you out of my
    mind. I can’t remember a story affecting me like this, and I’ve heard a lot!

    To keep myself humble and grateful (when I think I’ve got it hard), it had become a habit of mine to remember all the people living in poverty, or war-torn countries and the like. But now, I will also remember people like Jani and your family. In my opinion (I hope they would forgive me for saying this) I think Jani’s plight is worse.

    I grew up affected by alcoholism and my fathers’s undiagnosed depression/CFS and aspergers/OCD (I believe). It was difficult to say the least, but God and people have helped me to heal and forgive, and it’s a continual process.

    I’m on a rocky road of recovery from eating disorders and am diagnosed bi-polar II, which is currently well under control. Also, I have a dream of maybe being a psychotherapist or counsellor, and/or perhaps author one day and being able to help people from my experiences. So this is partly why I find Jani’s story interesting.

    I really don’t know how you find the time to do all of this!! I am SO so pleased for you to hear that Jani’s doing better now and that you’re living together! How wonderful.

    I also wish that I could help your cause financially, but at the moment I can’t. I just really want you to know that I feel love, empathy, and respect for your family. I wish I could do more. I feel so sad that you and Susan felt – and were – so alone in your situation. Thank God you had each other! I hope you’ll feel less alone because of the huge amount of love and prayers that are coming from people like me, and no doubt your wonderful support people, I hope.

    God bless you, and I hope we’ll all get where we want to go on this big journey called life.

    Christy

  97. Michael & Susan, I saw yor story air on Nightline, and like most others on here I felt compelled to send my words of hope and prayers. I have two daughters and was married to their father who was severely diagnosed with bi polar. Without going into great detail, I understand mental illness. All that I’ve watched, the Oprah clips, the show that aired last night, and your web site, I haven’t ever heard anything about your faith in God? From my experiance and almost dying in front of my children I will say that he does save , knock at the door and he will reveal his kingdom to you, God Bless Jani And all your family,,,

  98. I oppose your argument that NAMI is not important. We fight for mental health care daily. We talk to senetors and we run support groups for familys and consumers that are confused, lonley, sick or just need a friend. I am a trained facilitator and though it is often difficult and no I am not a liscenced person, I am able to offer coping skills to get through the night or to be a friend to keep you safe. We are a group of people who care for each other and as a person diagnosed as schizoaffective, NAMI has saved my life more than once. The education I have recieved has helped me to understand myself, my illness and how to cope with it better. Since then I have went from multiple hospitalizations to being a person to help support.
    ALSO, NAMI has people who are trained in many things. There are peer support specialist who are people who get it because we have been there, who work with people to help towards recovery along side therapists and psychologists.
    I will not ask you to recant about NAMI’s uselessness, but you need to realize we do what we can in our community where the goverment is failing us. We fight the goverment for mental health care coverage every year and ya know what… sometimes it works. We try to be there for people who have no one and we encourage people to seek professional help if they need it. We give them a chance to talk. A chance to meet people like them. A place that saves alot of people’s lives just by someone being there who understands.

    I support you and your fight for better mental health care because I had to go hours away to get real help when there is a ward 10 minutes from me. It sucks. I am sorry your family has such trials. I wish her all the wellness in the world.

    Being rude to other orginizations that may be a persons only hope truley hurts though. Think about others. ALSO, There are alot of factors that work into a mental illness.

    Theresa.

    Note from Michael: I appreciate your passionate defense of NAMI. If the National organization was made up of people like you then there would be no need for me to criticize them (and my criticisms are generally directed NAMI National, as Locals are different-some do a lot and some don’t do much at all). I have just had so many parents come to me because NAMI said that they could do nothing for them that I just can’t recant what I said. Perhaps they do more for adults but their services for MI children are non existent. Finally, on the Jani Foundation Facebook page you can see I published the 4Q corporate donations to NAMI. NAMI received tens of thousands of dollars from Universal Health Services, an organization that owns many residentials that have been repeatedly accused of abuse of children and adolescents. Since it is part of NAMI’s charter to defend the rights of mentally ill inpatient, this seems to be a massive conflict of interest on the part of NAMI National and hurts their credibility.

  99. Thanks for the wonderful work that you are doing. You are very loving parents, and you have a very intelligent, beautiful daughter.

    I had a psychotic onset in my last year of high school and I have had to struggle for the last 25 years. My family never understood it because I have been high functioning my whole life. (I have a few degrees.) I admire you because you have an understanding of the illness most people do not have.

  100. I do have a few important comments. Firstly, the cognitive impairment is just as lethal as the delusional ideation. Therapy stopped the delusional ideation within two years, but I have had to use the techniques I learned in cognitive therapy for decades to develop a quality of life. (I can’t think through emotional issues easily. My head pounds and feels like it will split open. This has left me in emotional pain for years.)

    Secondly, the biological model may encourage doctors to force drugs on high functioning patients. It also may neglect the progress that can be made from therapy. (My life will never be normal, but cognitive therapy has given me a quality of life I would have killed for as a teenager.)

    Note from Michael: Thank you. I appreciate the insight. Hopefully, more insight will be gained about what works and what doesn’t work as young children like Jani grow into adulthood with the illness. Even though I believe child onset schizophrenia has always existed, there is no research that has followed individuals with child onset through adulthood. I am not sure why this is. Part of this is probably because many psychiatrists outside of major urban teaching hospitals still don’t believe it can actually happen. But that is only part of the situation because I know that until the wholesale deinstitutionalization of those with mental illness beginning in the Seventies, there were indeed children who spent their entire lives institutionalized. This wasn’t right either but we still don’t have a happy medium. We went from institutionalization to nothing. There is still no (or very little) community support for children with severe mental illness and most of it is still behavioral based and geared to teenagers. There is almost nothing for children, who, I would argue, need more support because the illness struck them early in their social and cognitive development, depriving them of skills you had by the time your illness set in.

  101. The model has to fit the individual patient. One of my brothers is a schizophrenic that would be dead on the street without medications. (He has been homeless many times.) The doctors have to require him to take his meds because the part of his brain that monitors his state is badly impaired.

    But in my case, I am grateful I can refuse drugs and rely on therapy. Drugs could inhibit my thought processes, undermining any chance of progress in therapy, and have bad side effects.

    Schizophrenics are not one monolithic group. We are a variety of individuals. Any model must take this into account.

    Note from Michael: I completely agree with you. My interest in pushing the biological model is to prevent children with severe mental illness from being labeled juvenile delinquents.

  102. Thanks a lot for the wonderful reply. I think Jani, your family and you are heroes for raising awareness about the illness. I will be forever grateful.

    Even among children, it is hard to find one standard model that fits all. There are horror stories of normal children with behavioral problems that are forced into psychiatric medicated care against their will.

    In some cases, people are better off being required to take medications, such as my brother. This has saved his life. In other cases, people are far better off being able to refuse, such as myself.

    Note from Michael: Generally, I agree. It all comes to threat to self-harm (or others). If either of those exist, I think you have to medicate, at least to stability. Which then brings me to the second point: stability, which only matters to me in terms of quality of life. In other words, happiness. If you can achieve moments of happiness and life satisfaction without medication, I see no need to medicate. The overall goal of mental health should always be to help the person achieve a quality of life they enjoy.

  103. The best model is a mixture of a caring support network, the medical model and a therapeutic lifestyle. The support network needs to be trustworthy to make difficult decisions regarding medications and hospitalization, especially regarding children.

    (My therapy badly neglected the support network and even took advantage of my fear of it. That is my biggest criticism of psychology.)

    I think Jani is very blessed because she has a wonderful, devoted, caring family. I think she will do very well.

    Note from Michael: I completely agree, Scott. The caring support network is vital, both for the sufferer and for the caretakers (and the line is usually blurred because there aren’t too many parents of a mentally ill child who don’t have mental illness in some way themselves, including me). Social isolation is terrible (which was the big problem with institutionalization when it existed). But that was never replaced with a community model. And it is not just a one way street of someone with a diagnosis having to adapt to society. I believe it has to go the other way as well. Society must also adapt to the needs of those diagnosed with mental illness. This is a basic civil rights issue. Everybody deserves the chance to live with respect and dignity.

  104. gluten free diet?
    As a clinical psychologist, and a person with celiac disease, I wondered if your family has tried a gluten-free/casein-free diet for Jani? There is some evidence that suggests that this may be helpful for some individuals, and some clinical trials underway.

    As an aside, most psychologists (esp PhDs) do complete clinical research studies as part of their training, via their masters thesis and doctoral dissertations.

    Best of luck to you and your family!

    Note from Michael: It may help for the simple reason of cutting energy levels by depriving carbohydrates. But no, I would never do that to Jani. She has so little happiness in her life I am not about to take away her carbohydrates.

  105. living with mental illness
    I am the mother of a severely bipolar 36 year old, who lives with me. I can feel in my gut your painful situation. But, to sacrifice your son by not giving him a normal up-bringing in order to keep Jani in one apartment after another is going to produce results that as an adult he will not appreciate. Not all group homes are the bogey monster. My dear friend, mother of an autistic child, put him in a home at the age of 12 because his violence and size, over 6 ft., were sending his sisters to the emergency room. If there is violence with the mental illness as a child, as a teen, if the child is left at home to do the same behaviors, will escalate. This boy is now halfway through college. Not cured, mind you, but put with professionals who could deal with his violence and out bursts. I don’t believe the entire family should be changed because of one ill child, if there has been sufficient study statewide done into group homes. Will your son bring his girlfriends home for dinner someday? Will he be comfortable explaining living in two apartments? Will he have equal time spent for his activities without the threat of Jani having unusual behavior? It just seems to me that nobody’s looking years down the road at this boy, and that this precious girl, sent from God above, could actually thrive if the right situation were found. Is she in public school, or do you let her control her learning? Are there any realistic consequences for out of bounds behavior, or, is she simply re-directed and taken home? Does this control how much time your son gets out in public with both parents? You may very well hate me for this, but you’ve really buried your heads in the sand so severely that another child must be sacrificed, and it need not be. I live in a state, the reddest of red, with few resources, yet, many have been able to find help when they’ve searched.

    Note from Michael: You’re information is a bit out of date. We have all been living in one apartment since last October. Jani hasn’t suffered from violence in years thanks to a combination of medications that work quite well. But beyond that, I disagree with you. No one family member is more important than another. A family is a cohesive unit. Had the situation been reversed (and it may still be) we would not have sacrificed Bodhi for Jani either. What we did actually gave him more time and more freedom (when it was needed). We protected him. Also you are assuming he is neurotypical. He is not. He has autism. Frankly, I have far more important things to worry about with him, including whether he is in even able to GET to the point where he can have girlfriends. I warn readers not to project their own feelings onto either of my children or any other child.

  106. family strength
    I can’t tell if my first post went through, so I’ll make it short. I feel your pain. I’m the mother of a 36 year of severely bipolar girl, and I worry what her lot in life will be when I’m no longer here. I also have a friend who put her 12 year old son in residential care, here in Idaho, where the resources are worse than where you are. He was so violent, the family had been ruined. He’s still battling issues, but is in his second year of college. I don’t believe in sacrificing other children in the family, and having weird living conditions, just to feel good about yourself as a parent keeping a child out of residential care. When Jani is a teenager, what are your plans? As an adult? When your son has problems, because of this, and is ashamed to bring home a girlfriend, what plans for that? What plans to make him feel as important as her, since she controls the entire house? Some day you’ll die, and she may very well still be around. Do you expect your son to take care of her?

  107. You are in my thoughts and prayers–daily.
    Hello Dear Scholfield Family,

    I just came across the Oprah Show you did about the afflictions your daughter Jani is faced with. It has really gripped me. I just want you to know that I admire how you and your wife are working so hard to get through this tough thing.

    Please don’t take offense to what I am going to say, but there are many things that came to mind when I saw your story and what is happening to your sweet child. However, I will suffice to tell you that you and your family are truly in my thoughts and prayers and I have also asked my friends and family to life you all up in prayer because you are dealing with a very real and serious thing. May the Lord rescue your Jani from what she is suffering (I know that you don’t believe there is a cure for what she has, but there is). May the Lord give you and your wife guidance, resilience, clarity and understanding, but most of all divine intervention in this matter. I don’t know if you and your wife believe in God or even the power of prayer. I strongly encourage you to pray. I am a witness that prayer changes things…

    God bless you and may the Lord God quiet you with His love and rejoice over you with His song.
    Latoya

Leave a Reply

Your email address will not be published. Required fields are marked *