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Never Been This Far From Home

After “Standing in the Middle,” I have to update on Bodhi. How is he doing?

 

At the time that I wrote “Standing in the Middle,” Bodhi was several weeks into a rapid decline, similar to Jani’s declines… initially slow, with warning signs that I can explain away. That is the way psychosis comes. It comes creeping slowly, so slowly that it is easy to dismiss as a “rough time” at first. We react very differently than we would to signs of a physical infection. As parents, our minds leap to the worst possibilities of strep or meningitis at the first sign of a fever. We rush into urgent care, only to learn that our child probably just has a mild viral infection.

 

In other words, the flu.

 

You know what I am talking about. Every single time your child gets sick, you agonize over how long you should wait before seeking medical attention. The rational part of your mind knows that this will probably pass but there is the other part of you that is terrified that every second you delay is allowing the bacterial or viral invaders to gain strength. You argue with yourself, going back and forth between believing you are overreacting to the fear that THIS will be the one time that you did nothing and your child will die because of it.

 

With mental illness, on the other hand, we do exactly the opposite. We rationalize and rationalize, always waiting for the turnaround. We treat colds like we should treat mental illness and treat mental illness like we should treat colds.

 

During the 2008-2009 period that takes up most of January First, the worst part for me was not Jani’s violence. I’ve seen reader reviews that speculate as to my own mental illness and/or to how those years warped my mind psychologically. These are not difficult questions to answer. Long before Jani was born, I was diagnosed with chronic depression. That remains my only formal diagnosis and the one for which I was initially given medication. My personal psychiatrist has speculated that I might also have a mild form of Asperger’s, as well as potential Bipolar II (because I have never demonstrated prolonged “manic” periods, the hallmark of Bipolar I). These potential diagnoses have never been formalized because there is, so far, no need. Whatever I have, Lexapro treats it well enough that I can function. Diagnosis is a factor of functionality. Psychiatrists will only diagnosis and treat what impairs your ability to function. Not function perfectly. The pills aren’t magic. They become necessary when your ability to function becomes impaired enough that it significantly impacts your quality of life. Psychiatry, like every other branch of medicine, is not designed to make you happy. It is designed to make you functional. After that, finding happiness is up to you.

 

How the experience changed me is also relatively easy to answer. Did the experience of trying to bring Jani back from psychosis warp me? Ah… duh. I tried to kill myself. Of course it warped me. It warped the way I see the rest of the world. It warped the way I see Susan. I undergo medication treatment for anxiety (Klonapin) and therapy for PTSD. I literally jump every time I hear a child scream. I have no doubt that my brain has literally been “re-wired.” I rarely acknowledge to myself how traumatic those experiences in the book were, let alone to those around me. I don’t because no matter how traumatic it was for me, it was worse for Jani. I do my best not to think about what it did to Bodhi, which I justify through the fact that he was too young to remember anything in the first year, that after that we split into the two apartments, and had the situation been reversed we would have done the same for him. These are all excuses. I realize that. But if I think to much about it, if I allow myself to really feel all the guilt I carry, I couldn’t function.

 

Psychology used to view emotional repression as a bad thing, a legacy of Freud’s belief that repressed desires would ultimately explode into what was first called “hysteria,” then “neurosis,” and then psychosis. Hence the embracing of hypnosis in the 60s and 70s in the pursuit of “repressed memories.” The result of this, though, did not improve the ability to function. It destroyed the lives of the supposed abuser(s) and left the patient no better able to be a functional adult.

 

By the 1990s, in the wake of the destruction rendered by childhood “regression” therapies, psychologists began to reconsider the role of “repression.” They realize that repression was not in fact a pathology but a defense mechanism that allowed the patient to function in the face of trauma, similar to how young men and women in the military are able to function in the face of death and destruction from combat.

 

In other words, if it works, don’t destroy it for the myth that emotional knowledge always leads to wholeness (what I call the Good Will Hunting concept of psychology, which nobody outside of Hollywood movies and Psychology 101 classes actually practices). You know: a good cry and a strong bear hug and everything’s better.

 

Except that Good Will Hunting didn’t have a sequel to show that Will would continue to struggle with his emotions for the rest of his life. Damn you, Matt Damon.

 

So, yes, I am warped, if you want to to call it that. I am forever changed by what I experienced.

 

How should be fairly clear.

 

I see psychosis like a parasite, an invader of the mind.

 

Because, like I said, Jani’s violence was not the worst part. The worst part was watching the illness, whether it had the name “schizophrenia” or not, erode who Jani was. The worst part of mental illness, and this is common to ALL mental illnesses, is that they gradually destroy the personality of the victim. You watch your loved ones fade away before your eyes. Who they were. What made them laugh. What they used to love. Everything that makes us unique, you watch slowly disappear. The hardest part is watching your child’s personality eaten away.

 

I watched Jani de-evolve. Regress. Move backward. Slip away. Not grow up. Not change because she was learning and growing but change because external stimuli increasingly didn’t matter to her. The body still looked the same but the personality, the person Jani was, slowly disappeared.

 

Because the mechanism of schizophrenia and its long term outlook are still relatively unknown, at the time of her diagnosis, the dominant theory was that schizophrenia was a neuro-degenerative disease like Alzheimer’s. The belief was that you couldn’t stop the decay. You could only hope to slow it down.

 

Unfortunately, I took this to mean that every psychotic episode literally ate away another part of Jani’s brain, of her personality. I was so terrified because I believed that whatever damage the illness had done could not be reversed.

 

This is what really warped me. My entire existence became about detecting even the slightest hint of psychosis so I could get her into UCLA and stop the degradation of what was left of Jani’s mind. I watched her like a hawk. I shadowed her. I viciously fought back against any person I perceived as endangering Jani’s fragile stability, because anxiety opens the door to psychosis. If you look back at my older blogs from 2010 you will see I had no reluctance to drag people’s names through the mud. I absolutely went overboard. If I perceived that someone was putting Jani at risk of destabilization, I set out to fucking destroy them. I used this blog as a weapon to those who I believed had failed Jani, putting her at risk, and a threat to those in the future not to do the same thing. My blog, and the audience I had, was used as a weapon to turn to public opinion against whomever I perceived as “unfit” to work with children with psychosis.

 

I don’t really know how much damage I did during that time. I know a former therapist of Jani’s resigned. I got an aide at Bodhi’s school fired. I was a one man fucking wrecking ball.

 

In retrospect, there is a fine line between protecting Jani and Bodhi and turning my emotional pain on those who were convenient targets. It’s a hard line to walk.

 

I fluctuated between an unwillingness to fight the battles that needed to be fought and an immovable rage at the rest of the world, which should explain why in January First I can tell Susan her idea is crazy on one page and agree with her three pages later. I turned on a dime, struggling to control my emotional response, driven only by the desire to protect my children from any pain, which in my mind meant protecting them from up and down nature of living in the real world.

 

And Susan was exactly the same. If I ever get the chance to write another book, I will explore our relationship, both its positives and negatives.

 

So what does all this have to do with Bodhi?

 

Well, when you know that you have one child with schizophrenia and you know that statistically siblings of those with schizophrenia have a higher chance of also developing schizophrenia than the general population and, most importantly, you have become wired to see every single minute change in behavior as an early warning sign of psychosis, it became very easy to jump to conclusions as Bodhi began his rapid change in behavior over the last month. It didn’t matter that Bodhi’s change in personality was not like Jani’s change. It didn’t matter that while Jani’s change was persistent and permanent, Bodhi would swing from his normal happy self to being absolutely terrified. It didn’t matter that Jani never showed fear of ANYTHING until after she was on medication (by which I mean fear of things that can harm her). It didn’t matter that Jani progressively lost her attachment to us and showed no fear of being left in the hospital until AFTER the psychosis had begun to stabilize under a successful cocktail of medications. It didn’t matter that my conception of the damage of psychosis being irreversible was in fact wrong, that studies show that with medication, over time the brain actually begins to “fix” itself, restoring eroded brain matter and growing new neural pathways, that the only permanent impact of psychosis is loss of memory during the periods of psychosis. All that mattered was Bodhi was changing and we, and all of his behaviorists, were powerless to stop it.

 

I was already running through in my mind what anti-psychotics other than Risperdal can safely be given to a 45 pound child (answer: not much) when we saw “Dr. Howe” (as I named her in the book), just as we do every week.

 

She took Bodhi’s anxiety very seriously. She could see it, in her office. But she said something to us:

 

“If Jani didn’t have schizophrenia, if you didn’t have that experience, if you were starting from scratch with Bodhi, would you still think it was schizophrenia?”

 

I was stunned.

 

Because I knew the answer.

 

Of course not.

 

I am afraid Bodhi was schizophrenia because Jani has it.

 

“I understand the desire to jump straight to psychosis,” Dr. Howe continued. “Part of me wants to do that too, because of what we know about Jani.” She leaned forward. “But we have to treat each patient as unique. We have to put aside what we know about Jani and consider Bodhi by himself…

 

…and I am not seeing signs of psychosis.”

 

I didn’t believe her, but she has always been right. I still keenly remember flip-flopping back and forth between believing Dr. Howe knew what she was doing with Jani and believing she was an idiot. But in the end, her patience paid off. UCLA was able to make the diagnosis in Jani because they had more than a year of notes and observations from Dr. Howe. Dr. Howe spent all of 2008 trying to figure out what was going on. She never gave up. Not on Jani. And not on us. She understood our desperate desire for an answer but she pushed back as gently as she could against our demands for one.

 

Learning to trust is still one of my issues.

 

With Bodhi, what Dr. Howe focused on was the same thing we were focusing on: Bodhi was getting stuck in these thought loops, crying, throwing himself around, repeating the same thing over and over again despite our reassurances that whatever was bothering him was resolved.

 

When a person gets locked into a repeating thought that they cannot break out of, that is a thought disorder, and thought disorder is one of the “positive symptoms” of schizophrenia.

 

Except that schizophrenia is not the only mental illness that has thought disorders.

 

In schizophrenia, during psychosis, thinking operates independent from reality. It is the thoughts themselves that make no sense.

 

Bodhi’s thoughts made sense. He was afraid of Susan leaving, even just for a few seconds. What didn’t make sense was that he would keep repeating “Where did Mommy go?” in terror even after Susan was back and actually holding him. What didn’t make sense, what was “disordered,” was that Bodhi was continuing to focus on an event that was already over, unable to break free. It was as if his brain couldn’t catch up with reality.

 

There is, it turns out, another mental illness that does that.

 

Obsessive-compulsive disorder.

 

Do you remember how I reacted in January First when Susan first brought up schizophrenia? Do you remember what I thought of schizophrenia? I thought schizophrenia was what those people on the street corner arguing with thin air had. And they do, but the point is that that was my only conception of schizophrenia. I had no knowledge of the nuances of the illness.

 

Likewise, my conception of OCD was the people who have to wash their hands 270 times a day because they are terrified of germs or who have to check 40 times that the front door is actually locked.

 

Ah, but that is only the “compulsive” part in OCD. And just like no two people with schizophrenia present exactly the same symptoms, no two people with OCD present exactly the same symptoms.

 

Our friend Ruben, upon hearing what we were going through with Bodhi, directed us to the ending of the Howard Hughes biopic, The Aviator, staring Leonardo Di Caprio.

 

“Jets are the way of the future,” Howard says after successfully getting the Hercules (better known as “The Spruce Goose”) to fly. “Jets are the way of the future.” Then you see something in his face change. “Way of the future,” he repeats. “Way of the future. Way of the future. Way of the future. Way of the future.” And he keeps going, unable to break out of this thought loop.

[video: 100×100]

Everybody knows about Hughes’ odd behavior, but generally the focus is on his compulsive qualities (storing the jars of urine). The Aviator, in that final scene, shows the thought loops that can occur with OCD.

 

What Dr. Howe was seeing in Bodhi was not psychosis. He couldn’t break free from a disturbing thought, whatever that thought might happen to be in that moment.

 

Did she diagnosis him with OCD? No. His diagnosis remains autism. But she prescribed Prozac.

 

Prozac? Shit, two blogs ago I railed against the prescribing of Prozac for PSYCHOSIS in the UK. Prozac is an SSRI. An SSRI drove Jani deeper into psychosis, making her literally climb the walls. SSRIs carry a “black box warning” for minors due to increased risk of suicidal ideation.

 

But Bodhi has not shown any suicidal ideation. He is not a risk taker. Reluctantly, I agreed to try it, telling myself that Bodhi was not Jani.

 

That was two weeks ago.

 

Bodhi improved almost immediately, although Dr Howe warned us of the “honeymoon” period with new drugs. So far, the Prozac is working. Bodhi no longer spends every single waking moment in a perpetual terror. He still gets upset when Susan leaves the room but I and his behaviorists can help him through it. He is making progress again with his ABA therapy.

 

But most importantly, his personality is back. He is sweet, playful, and slightly mischievous little boy he was. He is talking again. Communicating.

 

Will it last? I don’t know.

 

What about Jani? Jani is struggling a bit right now. But it isn’t the psychosis, at least not completely. Jani is ten now. She is growing up.

 

Remember how I said that once psychosis is under treatment, the brain rebuilds? Well, what that means is that emotional, cognitive, and psychological development restarts. It picks up where it left off. Psychosis started taking Jani at three. She was seven by the time she began to stabilize. Full stabilization took another two years. So at minimum, Jani lost three whole years of her life. The memories are gone, which is hard, but it also stopped her development cold.

 

Now she is on the verge of puberty. In girls, hormones begin to cycle up to two years before the first period. Adolescence is creeping in at the same speed the psychosis used to creep in, which is what usually allows me to ignore it.

 

But adolescence is coming anyway. And adolescence is the time for all of us when we all have a little disordered thinking, a little strange behavior. Personalities can radically change. Basically, it is like schizophrenia but without the hallucinations.

 

And then Jani is still catching up on those lost years. Dr. Howe and Jani’s therapist point out to me behaviors in Jani that are commonly seen in five and six year olds. Social problems that in most kids are resolved by now Jani is still dealing with. So what I am always terrified is a sign of psychosis is actually multiple developmental stages happening all at the same time, as Jani ping-pongs from about five years old to pre-teen.

 

So where does that leave me, the guardian against psychosis? Well, it is still there, competing with the other changes going on with Jani, only this time those other changes have a fair shot. I now have to accept that psychosis is now just a single facet of Jani’s life… not something that completely defines her.

 

Jani and Bodhi are learning to deal with the rest of the world. They have issues, but they are still out there.

 

I know I have to do the same thing.

 

Because my emotional development stopped too.

 

Things aren’t going to change overnight. I can’t just suddenly stop, particularly when I know the psychosis is still out there. I still can’t really leave Jani alone. I still don’t feel comfortable working outside of our apartment where I can do my teaching online at night.

 

I will be completely honest with you.

 

I am terrified.

 

Because I now know there actually IS another life after schizophrenia. I wasn’t prepared for that. I didn’t think there was anything on the other side of this mountain.

 

But there is.

 

We have reached “the undiscovered country.” The future.

 

And just like Jani and Bodhi, I have to figure out how to live in it.

 

[video: 100×100]

 

Update: We will not be able to make December rent without help. Any donations via Paypal to donations@janisjourney.org.

40 comments on “Never Been This Far From Home

  1. Response to this blog….and the one a few blogs ago!
    Hi Michael,

    I’m writing this in response to your blog about the UK’s mental health system, because I thought there would be more chance of you reading it here, hope that’s ok.

    I just wanted to touch on the point where you stated the UK’s treatment of adults with MH issues is far superior to that of the US and that treatment of children is poor. While I will agree with you that children’s treatment is terrible (having been in the ‘service’ as it is called since I was 7), the treatment of adults is no better. With waiting lists of 6 months or more just to get an assessment, diagnoses rarely given, medications prescribed by GPs without ANY diagnosis, little help for those in crisis and a hundred other things I could mention, the situation of mental health care in the UK IS in crisis.

    I was prescribed SSRIs at 17 and have been on them ever since (now 22) with no official diagnosis. It took going private, and spending thousands of pounds to finally be diagnosed, and being taken off Prozac to finally have relief from the chronic suicidality that has been plauging me since my teens. Pay them, and you will get the service you want. However, if you don’t have the cash, expect to remain in limbo, undiagnosed, with under qualified and over stretched mental health practitioners.

    Anyway I am glad to hear that Bodhi is improving and regaining some of his wonderful personality 🙂 You’re doing a fantastic job with both Bodhi and Jani (she’s such a beautiful young lady! Her curls are amazing!)

  2. Autism and anxiety, and thought loops.
    Hi. I’m going to contribute my un-asked for $0.02 because it’s 4 am and this seems like a constructive usage of my time. I don’t know how much you know about autism; I’m going to assume a lot because your son was diagnosed with it, but a lot, a staggering number, of autistic children have massive anxiety. I am autistic and bipolar, and I work with a child who has severe autism (I’m on the Asperger’s end of the spectrum). The girl I work with, S, has severe anxiety. It used to be that when her dad left for work, she was inconsolable. Screaming, biting her hands, jabbering in her martian language. She’s gotten better about it, but little things can set her off because of her autism related anxiety. In particular, is the ‘medicine’ her mother gives her every morning (a mild, tasteless laxative powder dissolved in water for her GI issues). As soon as she sees it coming, she starts wailing and screaming, anxious about it, even though she knows it’s tasteless and it’s the same thing every day. Initially, the medicine was dissolved in a large bottle of water that she is required to take to school anyway. S is a smart cookie, and she figured out the game. Now she doesn’t drink water she hasn’t poured for herself. If you give her a cup of water, she will literally take it to the sink, dump the cup, rinse it out, and fill it again.

    I guess what I’m saying here is that with autism, you never know what you’re going to get. I know that my anxieties are tied into my ASD, and I watch S struggle with her massive anxiety every day. A big part of autism correlates with OCD, we have compulsions (stimming, for example. ever try to make an autistic person stop stimming?) and we obsess. I get thought loops too, where sometimes I have a word in my mouth that I just have to say, to repeat, and if I don’t, it’s hard to focus on anything else. I also have compulsions and obsessions (a lot of autistics have ‘special interests’ which range far and wide but still count as obsessions), but I don’t have OCD. If the psychiatrist doesn’t seem to think OCD or psychosis is present in Bodhi, then he really could just be autistic. Autism spectrum disorders vary so much that almost no one kid is like another kid, and the symptoms are diverse as well. Some autistic children do benefit from psychotropic medication like Prozac, or even antipsychotics. I take meds for my bipolar, but at one point I was taking separate medication for the anxiety produced by my autism, fortunately a different atypical antipsychotic treats both illnesses and I get to take less pills.

    I hope you don’t consider this out of line or inappropriate. I’ve been following your blog since 2010 and actually wrote a term paper on childhood mental illness using your blog and ‘More Than Words’ as references two years ago. I thought I’d chip in what I know in the hopes that it might be helpful. 🙂

    -Brenna

  3. There is a ray of hope…
    Wow…you really touched home with me this week. First, I’m glad things are looking better for y’all then they did a few weeks ago. That is wonderful and I hope this continues. If any family deserves a break, I’m pretty sure y’all are up at the top of the list. Second, thanks for pointing out that OCD isn’t all about germs and door knobs. My Marissa is terribly obsessive in her thought processes. She cannot let something go. I feel guilty because I get so frustrated and tell her to “drop it” but then she becomes obsessed with the original thought AND the need to defend it…exhausting for her and us.
    And finally, I too am standing at the far side of the battlefield now. I look at Marissas brother and every temper tantrum I question as a “rage” every giggle could be “mania”…I’ve trained my brain to see zebras, not horses.
    Your blog, the support group, the kids (mine and yours), and Susan have helped me realize we are going to get though this. Not unscathed, but just that ray of hope is HUGE. Thanks again.

  4. Dont give up. Thinking of u all.,:)

    Jesus healed my friend,of Schizophreania and me of many things. Keep your chin up.

    🙂 i know your going through. Jesus can help. Hes goy an awesome plan for u all. 🙂

  5. It is nice to know the children are doing well. I think you should write another book. Right now I am in the end of my dark night. Only few more weeks until I go to court. Having people like you and Susan are important. You let us know we’re not alone in what we are going through when the people around us do not understand. My college writing instructor’s father is bipolar as well. She understands what our lives are like. There are so many people living with mental illness that the stigma shouldn’t be there. Thank you for telling your family’s story and writing this blog. It helps more people than you can imagine.

  6. Glad things are better
    I’m really happy for you all that Bodhi is doing better. I was concerned about him from what you wrote before. I guess it’s another thing to be thankful for this Thanksgiving.

  7. Oh Michael!
    Oh Michael! Oh My God. Poor you. Poor Susan. Poor Jani. Poor Bohdi.

    I’m so sorry it’s getting rough over there. keep hanging on. is there anything I can do? How is he now? I’m praying for you Michael.

    I came under the thought I’d mention an idea for my safe return to the group and I found this post. I feel so selfish now. My problems can wait. If you need anything be it a prayer or an ear you know where to find me.

  8. Re: Far from Home
    So happy to read that there is now hope that Jani can perhaps “rewire” herself, such that the effects of her SZ will, in the future, be limited.

    On the other hand, it’s sad that Jani will have to go thru the emotional pinging and ponging of her teen years. All the while trying to deal with her SZ. God knows those years are ruff on all of us.

    Still, I’m certain Jani will overcome what obstacles there may be.

  9. Just so you know, the behavior you’re describing with Bodhi, the anxiety and tendency to be stuck on a thought, is also quite typical for autism. He could just have autism and no mental illness at all. Fortunately Prozac works for these symptoms in autistic people too.

    Note from Michael: Yes, Dr. Howe said that as well.

  10. My son is 18 now
    My son was diagnosed with schizo-affective disorder 3 years ago. This was after an earlier 3 years of misdiagnosis. I have followed Jani’s story for a while and know what you and your wife go thru. People wonder if I am scared of my son. I am not. I am afraid for my son. I think about what will happen to him when I die all the time. He is compliant on his meds as long as I remind him. He is a wonderful young man… It is my hope for Jani that as her growth and hormone levels become more stable (after puberty) that she responds more easily to meds. One thing that we have on our side having our children diagnosed so young, is that they are used to taking the meds and so as adults I think they are more willing to take them. My son doesn’t go thru times where he thinks the pills are holding him back like so many people do taking anti-psychotics. Anyway, I wanted to let you know that there is hope, your not crazy, and you are not alone…

    Note from Michael: Thank you, Jeri.

  11. Hi, Michael. I agree, treating mental illness is only half the battle: getting one to function in the world that is far beyond mental illness, the real world, is challenging. I have dealt with that fear for all my life, and it is the toughest part of dealing with severe OCD and mild Aspergers. I think Bodhi has autism with comorbid OCD, however, the OCD is just comorbid. The repetitive behaviors seem to be distressing him; I heard that Autistic repetition is more enjoyable, it is a comfort mechanism. However, from what I saw in Bodhi, it seems to be a mix of autistic and OCD–he seems to have what I have suffered with for a long time. I am glad that I was able to come over, it was the best birthday that I had. I hope that this journey with Jani and Bodhi will bring a light at the end of the tunnel–that they will be able to have a great life when they get old. I fear that too, what will happen to me when my parents are gone, however, I still cling to the hope that mental health services will get better in the future, and that medicine will be more effective with less side effects (weight gain is an issue with my medications); however, I am sure it will, I hope that it will. Have a wonderful holidays, Michael, thanks for everything that you do.

    Note from Michael: Ruben is correct. He has actually met Bodhi and spent some time with us.

  12. OCD
    Hi Michael,

    I’ve been following your blog & have donated a few times to you guys. I also live in Santa Clarita. I am 28 and have had OCD since I was 9 and been on medication and in therapy since then. It’s a very difficult disorder to treat and it’s made my life completely miserable. On top of the OCD, I have chronic depression and horrible anxiety. I’ve written a lot about it if you ever care to read anything or talk to someone with a lot of experience. I also have been published in a book that may be interesting for you read.

    http://www.amazon.com/Check-Mates-Collection-Obsessive-Compulsive-Disorder/dp/0956452906/ref=sr_1_10?s=books&ie=UTF8&qid=1354034544&sr=1-10&keywords=check+mates

    If you ever need anyone to talk to, please let me know. I have a lot of history with mental illness and I am a huge advocate for erasing the stigma.

    Thoughts and prayers are with you and your family,
    Jen

    Note from Michael: Thank you for the kind offer. I will definitely check it out. I want to add resources for OCD to my “resources” page here on the website.

  13. Symptoms
    Does Jani hear voices and have delusions or does she mainly have visual hallucinations? It’s just something I was wondering about so I thought I’d ask.

    Note from Michael: She says she hears things so I would say, yes. All five senses are susceptible to hallucinations with the strongest being visual/auditory and tactile (feeling something that isn’t there). What exactly do you mean by “delusions?” She sometimes has delusional (irrational) thinking but it is not as protracted as it was. None of her active symptoms are nearly as bad as they were during 2008/2009.

  14. I have 3 boys on the autism spectrum with my 10 yr old possibly having a mood disorder, prob.bipolar.my heart aches for u and Jani-u guys are amazing…I feel like giving up every day but we go on, fighting for our children.

    I recently read a book about wheat and it was cited several times about the link between wheat gluten and schizophrenia.I feel ridiculous even asking but have u ever tried gluten free? I havnot but aleways wonder if it

    Note from Michael: I have not because I feel it would needlessly torture Jani to deny her foods that she loves. Her life is hard enough without putting through that. The connection between gluten and schizophrenia is very weak and I don’t feel there is enough justification to try it. But that’s just me.

  15. What kind of delusional thinking does she have? I mean, what does she say/talk about? What does the delusional thinking entail?
    I’m just wondering what the symptoms are like in kids.

    Note: I can’t speak for other kids. I can only speak for Jani. In Jani’s case, there is a difference between talking about her hallucinations (which is not disordered thinking) and for example believing things that don’t make sense or where the thoughts get interrupted.

  16. Greetings
    Hi, I’m saluting you from Venezuela and really, this story touched my heart, I hope Jani gets “the best as she cans” and be happy, I know the adolescense can be a nightmare and I can’t imagine how horrible would be in a person with Ezquizophrenia (sorry for my bad english)
    I was bringed here by the song Calalini from Vocaloid (I like vocaloid) I think you know about it xD
    Somehow, I know it sounds like a weird fantasy but, I wish to be there in Calalini and help Jani in her trouble

    You 2 (You and your wife) are some esplendid parents and you haave a beautiful daughter, I hope the best for you

  17. Keep fighting
    I recently learned of Jani and became fascinated with her life and your family’s life. I felt the urge to reply to every negative comment about your situation on every youtube, but I thought I’d save myself the energy (can’t change the mind of those that refuse to think) and post here to show my support directly to you.

    My mother was bipolar and otherwise very physically ill my entire life. I recently discovered I am missing a kidney and have internal birth defects not apparent, all from her poor health while pregnant with me (presumably). I don’t blame her, not one bit. She loved me with every cell in her body and her and my dad gave everything they could to raise me.

    She wasn’t diagnosed bipolar until I was in my teens, but my father and I later realized the signs were there when she was much younger – at least in high school. She’d stay up all night, empty all the drawers in her room and reorganize. She went to one of those “repressive” memory shrinks in the 90s (they were still around then) and became convinced her father sexual abused her and, for a few months, that my father was sexually abusing her. I’ll never know the truth about her father, but my father did not abuse her and she figured that out and fired her shrink. Simply put, some of the memories COULDN’T have happened.

    More to the point of thsi particular post, my father, to this day, finds bipolar behavior in everything I do. I am nearing my 40s and past the age of diagnosis in most cases. I have no real symptoms of the illness, most likely because I don’t have it. But, if I start writing, stay up later than I should, talk even faster than my normal auction-style delivery, or organize my house, he gets worried. He lives in another state, so I hide things I know he might associate with symptoms. But he’ll always tell me I need to maintain my health insurance because if (and I believe in his head it is a positive “when”) I do manifest bipolar, it won’t be preexisting. He lives in constant paranoia that I will become ill (but not my brother, which is strange as genetically speaking, he is more likely to become so. Perhaps, it was my crazy teenage years that made my dad believe I have the seed of bipolar hidden inside.)

    I wish the best for you. Though my family struggled greatly, it doesn’t hold a candle to your daily battles. I will continue to watch for updates as not only do I find myself caring for a family of perfect strangers, but it does help me know I am not alone in what my family dealt with. We have much in common.

    Thank you for being willing to share your life with random internet people. It really does mean something.

    Note from Michael: Wow. Quite powerful. Thank you for sharing. What you said does help. I am like your father; I can’t just turn the “switch” off.

  18. Suggestion
    Dear Michael and Susan,

    Watching Jani and your family on Opra really touched my heart. I must say, the interview Opra had with Jani struck me so strongly when Jani talked about Calalini and the cat400 and the mean personality that makes her hit. I am not a Psychic but have been reading boods dated back from studies in the 1930’s to date and the way Jani talks about these personalities sounds just like spiritual entities or psychic connections to me. Children are so susceptible to these connections and not understanding them would be quite frightening and at first no one believing in what she see’s then agreeing with her about these “halucinations” when she knows they really don’t believe her. Opra had a well known psychic named “James Van Praagh”, who has written plenty of books on Makimg the psychic connection on Heaven and Earth. There is also a woman, Teresa Caputto (The Long Island Medium), who will blow your mind!, or Amy Allen, a psychic medium. Both of these Mediums are on T.V. and I suggest you follow their shows just to see and hear what they have to say and are all about. I am sure there are other mediums just a valid as these three are. They do have ways of removing these entities away from other people and places. This may sound way off base than the whole disease aspect of Jani’s treatment but I just felt the need to share this with you, as I know you are always considering new things. My daughter was 16 years old and fighting depression so the doctor put her on Prozac and by her 3rd day on Prozac she was in our bed crying she was thinking of killing us and was so freaked out that that thought even entered her mind. I let her sleep with us and held her all night and she never took that medication again. I know Prozac has also helped alot of people but I don’t find it user friendly with children. I wish you and your family the best and do pray for your circumstances to change. A miracle would be great! Hang in there cause you two are doing an awesome job. God Bless, Carrie 🙂

    Note from Michael: I know you mean well but I am actually not open to “new things.” I believe in science. Who is to say that the demonic or spiritual “possessions” of the past were not psychotic episodes? We didn’t understand what they were then and I think part of us wants to believe in it now because it means that Jani can be “cured” but to believe that this is anything other than a biological brain disorder is to disrespect it and those who suffer from it.

  19. Thank you for your reply. It doesn’t really answer my question though. What I was wondering was what kind of things does Jani believe that doesn’t make sense? How does her disordered thinking express itself? I know what these symptoms are like in adults and I was just interested in knowing what they are like in a child, if you don’t mind.

    Note from Michael: Yes, I know I didn’t answer your question. Your questions require time and thoughtfulness that I don’t always have. Again, I can’t speak for other children but only for Jani. Quite often “disordered thinking” is confused with thinking that is not linear, which is not always the case. I just want to be clear on that. Thought disorder can also be thoughts which are linear and make sense in terms of their verbal expression but are completely illogical and not based on what is actually happening. That is what I see more in Jani and other children with severe mental illness. They are quite articulate but their beliefs/fears are not grounded in any reality. I will give you two examples with Jani: one is related to a hallucination, the other is not. The one related to a hallucination is Jani’s periodic belief that she is having a bowel movement (loose stool, as she calls it). She feels this as intensely as someone touching you yet it is not actually happening. She used to even on occasion “see” it when it was not there. She is getting better with this by us telling her to go check herself. Now here is where the disordered thinking comes in: she will often refuse to go to the bathroom and “check herself” because she believes she has it. So so she won’t allow herself to visually check the status of her pants for fear that the hallucination is real. This can be so strong that she will sometimes refuse to go to the bathroom at all. Here is where you get some bleed with OCD. OCD does not have hallucinations but it is thought disorder illness as well, believing that things will happen when there is no logic there. Basically, with an articulate child who otherwise understands the workings of the world, with Jani you have her believing things that have no basis in reality. Other belief is when we are meeting Susan and Bodhi at a restaurant Jani will believe Susan will eat all Jani’s food, even though this has never happened and has no basis in reality. So we deal with this by not ordering until we arrive.

  20. Michael, you and your family go through much more than I can imagine, and I do admire you guys greatly. It was difficult enough to raise an impulsive child (possibly adhd), but he is now 17, and hasn’t been in trouble in a few years (kicked out of school, court visits, fun like that lol). Our younger son (9 years old) has/had anger issues, where he would be impossible to deal with for several hours, and we would have to restrain him so he wouldn’t hurt himself or us. He would go into loops where he would focus on whatever made him angry. Nothing would calm him. His counselor believed he had adhd and wanted to put him on medication, even though he was functioning well in school. While I am not against medication, everything I read about it, and all the children I know on it, said that medication does not help the anger issues. After doing a LOT of research on different diet studies that are just now being done (mostly not in the US), and speaking with another parent who had done this, I decided to try a gluten free diet because I figured it couldn’t hurt. This is not a magic bullet, in that diet changes take weeks to help. Also, with children like mine, we still have to work on having routines so he knows what he has to do. I found a gluten free alternative to almost everything he likes (cookies, ice cream, breads, pasta), and it has made a HUGE change in his behavior. He hasn’t had an anger episode since we started this. I still buy him McDonalds, and I just switch out the buns. The fries and M&M McFlurry is gluten free. What also happened with this diet is that he became more focused in school, and he would finally sleep at night. Before I changed his diet, he would only get about 6-7 hours a night. Now he is tired and wants to go to sleep, and he sleeps the normal 9-10 hours.
    I am not advocating this for everyone, I just wanted you to know that it has worked for me and for others I have spoken to who have tried it. Even my husband was skeptical until our son went off the diet for a week, and we had 3 episodes in 7 days. I have never looked into diet for helping anything other than behavior issues, so I have no idea if it would even help anyone else, but I am starting to believe that diet plays a bigger role in our lives than we know. The fact that most of our food is genetically modified by man without benefit of understanding the larger ramifications scare me. I know I probably come across as one of those new age crazy people (because that’s how I thought of them too), but I plan to continue this diet for him.
    I am glad both of your children are doing better, and I appreciate the updates on your lives. I admire your perseverance, and I hope everything continues to improve for all of you.

  21. Thank You
    Dear Michael,

    I found Jani’s story on YouTube a month ago, and since then I have learned everything I can about childhood schizophrenia. I have never known anyone with a mental illness, but I’ve always wanted to do something for people who suffer from them. I had been studying Alzheimer’s and dementia because of my grandmother, but when I learned about schizophrenia, somthing inside of me just clicked.

    I had always seen “the cazy people” in movies and on TV and standing on streetcorners yelling at nothing, but it never really clicked for me that these “dangerous poeople” were people until I started reading stories. When I found Jani’s, It was like God smacked me upside the head with a clue bat and said, “I love these people too. Start seeing them like I do. Not as crazy or neccesarily demon-posessed, but as people to be loved and cared for and treated with respect.”

    “But, God,” I said, These people are dangerous and unstable and scary. I wouldn’t know what to do with one if I met one. Besides, aren’t they all demon-posessed anyway?”

    “No. They are sick. Remember who I bless: ‘the sick, for they shall be healed.’ I love these people, ___. I love them deeply.”

    Your family altered my whole worldview and made me care about the unknowns, the tiny percenage of people whose problems may never go away.

    Thank you. Thank you for opening my eyes. I am a highschool sophomore and a Christian. Thanks to you, I am now taking a year of Psychology classes. I’m praying for you. I wish I could do more.

    “Fear thou not, for I am with thee. Be not dismayed, for I am thy God. I will strengthen thee, yea, I will help thee; I will uphold thee with the right hand of My righteousness” – Bible, KJV, Old Testament, Isaiah, Chapter 40, verse 10.

    Never give up. That’s what you gave me. Thank you.

    Note from Michael: This is beautiful. Thank you. You are a true Christian who understands God’s will is for us to work his will.

  22. Can you have elements of OCD with schizophrenia without having OCD?

    Before diagnoses I had obsessive behaviors. I thought that I had a horrible disease that spread as easily as a cold to anything I touched. So I would frantically clean everything thinking it would prevent it from spreading. I didn’t “see” the disease, but coincidences would convince me that I was right, even when I was reassured that the person didn’t have any kind of rash, that they’d washed their clothes or their bedsheets, etc.

    I also had repeating thoughts that I couldn’t snap out of for quite a long time, perhaps because I could “hear” my thoughts and would keep thinking about the thought i had “heard”. So something as meaningless as “You need to wash the dishes”, would repeat itself over and over and over even after I had done the dishes.

    I did and still do feel guilt like a small child does, over things that most people find easy to get over. If I say something I perceive as stupid, feel like i hurt someones feelings, or spill something on the table, I am consumed with what I did wrong for quite some time despite people reassuring me it isn’t a big deal. I can’t snap myself out of this without completely distracting myself from it, because no matter what I say to myself about how I’d had this kind of thought before and I was wrong, logic just won’t pull me out of it.

    Antipsychotic medication does help with all of these things, but the last thing I still struggle with. I haven’t talked to anyone about it because I didn’t see it as “as important” as things like hallucinations, and I was/am embarassed and afraid that maybe what I did really was/is a horrible thing.

    I didn’t realize how “different” or “abnormal” this type of thinking is until I read this post.

    Note from Michael: I honestly don’t know. That would be something you would have to talk to your psychiatrist about.

  23. Synesthesia?
    I am wondering if you have looked into if Jani may have Synesthesia? This is where you see numbers as having colors, or where days of the week or numbers have their own personalities.

    “Ordinal-linguistic personification (OLP, or personification for short) is a form of synesthesia in which ordered sequences, such as ordinal numbers, days, months and letters are associated with personalities.[9][33] Although this form of synesthesia was documented as early as the 1890s[25][34] modern research has, until recently,[1] paid little attention to this form.

    For example, one synesthete says, “T’s are generally crabbed, ungenerous creatures. U is a soulless sort of thing. 4 is honest, but… 3 I cannot trust… 9 is dark, a gentleman, tall and graceful, but politic under his suavity.”[34] Likewise, Cytowic’s subject MT says, “I [is] a bit of a worrier at times, although easy-going; J [is] male; appearing jocular, but with strength of character; K [is] female; quiet, responsible….”[1]

    For some people in addition to numbers and other ordinal sequences, objects are sometimes imbued with a sense of personality. Recent research has begun to show that alphanumeric personification co-varies with other forms of synesthesia, and is consistent and automatic, as required to be considered a form of synesthesia.”

    http://en.wikipedia.org/wiki/Synesthesia

    Note from Michael: It’s possible but no one is really pursuing it as it doesn’t quite fit. There is a pretty noticeable difference between synesthesia and schizophrenia. A huge difference and psychiatrists are away of this. Remember Jani still has the same care team she has had for years.

  24. Dear Schofield Family
    I am so impressed with the resilience and fortitude that you appear to possess, I am a mental health nurse in australia/new zealand with a special interest in adolecents/children. I hope your journey will be filled with amazing experiences to help you through the times which will appear dark and hopeless, however nobody/one can ever take away the hope that things can/will get better. The world needs people like you to show them that schizophrenia/mental illness is not a dirty/dangerous word, but a word in which the world is different and needs understanding and empathy. May the lord keep you all close

    Note from Michael: Thank you.

  25. I am currently reading your book, and I must say that it is both informative and terribly gut-wrenching at times. As a mother of two and an educator for over twenty-nine years, I can truly empathize with the difficult decisions and frustration that you experience every day.

    When I read the chapter about the conference that you and your wife had with Jani’s teachers, I could feel your helplessness; however, I could not help but feel terribly sorry for Jani’s teacher. The horrible things that were said to that poor individual made my blood boil. The name calling and accusations were horrendous.

    Maya Angelou says that, “when we know better, we do better.” Knowing what you know now about Jani’s schizophrenia, do you feel that you were unfair to this teacher?

    Note from Michael: That is a very interesting question. Obviously, I was unable to teach her anything about mental illness because I didn’t know at the time Jani had schizophrenia and as you read I was in pretty heavy denial about what academic placement Jani would do best in. I never saw her again after Jani was diagnosed. I debated going back to see her but since Jani was no longer at that particular school in the district I felt that going back would just be about me trying to make her feel bad. So to answer your question, yes, I was unfair. I was unfair to a lot of people back then, venting my anger (which was motivated by my fear) on anyone and everyone (I did it to the ER doctor at UCLA as well, if you recall). I didn’t like this particular teacher because her approach was not warm which was such a departure from Jani’s kindergarten teacher. She struck me as cold but I think that was unfair. Of course, knowing what I know now, she was asked to deal with a situation for which she had no training and to be honest she really did try, something I never gave her credit for. I think that when I found out that other parents were complaining about Jani’s disruptions I went into that protective parent mode and just saw red. At the time, it felt like Jani was being rejected by her and obviously I was intensely protective of Jani. I was scared and I was lashing out. So, yes, I think my beliefs about Jani’s first grade teacher were unfair but remembering how I felt then I don’t think I could have acted better. It is only now, years after the crisis, that I can look back and say, yes, I was wrong. Thanks for the question. I love questions from readers that ask me to reflect.

  26. i just wanted to write to say that jesus loves you.put all your worries to him,he has never left you,jani and family.you dont have to spend the rest of your lives like this,Jesus can deliver jani,he can set her free.theres a god who loves us and a devil who wants to destroy us.please dont take offense to this,i really felt the holy spirit leading me to contact you as i watched janis story.i will keep you all in my prayers!! may god bless you all

  27. Wow, Michael,as usual,you’ve expressed this part of the journey so well. It’s so hard to stop watching the second child, our daughter who has ASD and repetitive thought loops as well. After going through a period of psychosis (hallucinations, delusions)with our son, I feel unable to judge accurately or to ever stop watching both of them. How to enjoy the relative peace while ever watching for a new onslaught? I haven’t figured this out. Be kind to yourself as you reflect on the past few years – as kind as you are to the rest of us who carry this burden too.
    PS. I am feeling slightly tortured by ‘Brain on Fire” by Susanna Calahan. Any thoughts?

  28. Nutritional Therapy
    I was wondering if you ever tried Jani and Bodi on a gluten free diet? There are a lot of neurological disorders that can benefit from a diet free of gluten. I actually read an article recently, that stated that a researcher went into a psych ward populated by older schizophrenia and about 90% of them tested positive for gluten intolerance and about 1/3 of them greatly improved on a ketogenic diet. I’m not sure why it was only 1/3 – but, I know that diets are hard to manage as a control because folks may not follow them strictly. Here is a link on a scholarly paper about the improvement of a woman who WAS 70 YEARS OLD and had battled hallucinations since she was 17. http://www.nutritionandmetabolism.com/content/6/1/10
    What do you have to lose? What a miracle if your kids could just eat eggs and steak and get off all those drugs? God bless you and your family.

    Note from Michael: First, Jani is vegetarian. Always has been (even though we are not). She refuses to eat meat because she doesn’t want to eat meat. Second, there is no hard scientific evidence linking gluten to anything. Gluten-free is just another fad diet and I am not going to torture Jani by denying her the foods she loves just to satisfy the desires of people who would rather see her on a crackpot diet than medications.

    1. Hi,

      I understand your aversion for the discipline and patience it would take to implement the (vegan/vegetarian) ketogenic meals mentioned in the above linked Duke University Medical Department article; in the linked article Duke reported on the 70-year old schizophrenic whose life-long symptoms reversed after about three weeks (from the article already linked)). See excerpts below. I suspect you’d get help from Duke, too, but that’s speculation.

      it would likely be four days of increased tempter-tantrum/related as the brain converts from sugars to ketones for fuel and exhausts the last sugar stores in the liver. By Day 6 or 7 you would see a notable improvement in mental behaviour.

      The ketogenic diet can be done vegan and vegetarian-style; I have done so several times to counter successfully a multi-decade Lyme infection with neurological symptoms (and then I found it is good for the mind in general: energy, creativity, rote working…): eggs, dairy, tofu, nuts, coconut oil, avocados, kale, spinach, collard, etc.

      As a family, if you also don’t just feel better (depression lifted, for example), I’d love to know. I’d be very surprised if you all did not feel better. Many people take up a person version of “ketogenic” cycling after their first trial: some higher carb days amid lo-carb days.

      Feel free to contact me about the vegan and vegetarian ketogenic diet. I’d be happy to share my recipes and support. I read your story in a magazine years ago and wondered if anyone discussed the vegan/vegetarian ketogenic diet with you.

      Okay, from Duke University Medical Center (because it’d be terrible if your child learned at age 70 that this could have been tested at age 12):
      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2652467/

      “C.D. is a 70 year-old Caucasian female with a diagnosis of schizophrenia since the age of seventeen. Her diagnosis was based on paranoia, disorganized speech, and hallucinations. She reported both auditory and visual hallucinations, including seeing skeletons and hearing voices that told her to hurt herself.

      ” (…) She was seen again in clinic 19 days later. When asked how she was doing, she responded that she was no longer hearing voices or seeing skeletons. She first noticed this upon awakening about 8 days after starting the program. She had had no change in medication. The only change had been in her dietary intake which now consisted of beef, chicken, turkey, ham, fish, green beans, tomatoes, diet drinks, and water. She denied hunger. C.D. was very happy that she was no longer hearing voices, and believed that it made her calmer. Her body weight was 136.2 kilograms, sitting BP was 150/84 mmHg, and pulse was 76 beats per minute.

      ” (…) Over the course of 12 months, C.D. has continued the low-carbohydrate, ketogenic diet and has had no recurrence of her auditory or visual hallucinations.

      ” (…) While more research is needed to confirm the association between gluten intake and schizophrenia and whether dietary change can ameliorate schizophrenic symptoms, health care providers could consider screening patients with schizophrenia for celiac disease and/or augment the medical regimen with a gluten-free or low-carbohydrate, ketogenic diet.”

      Ketogenic diet is also applied to Parkinson’s (Oxford University trials), head trauma and injury (University of Virgina), Alzheimers (Mary Newport, MD), and children’s seizure control since about 1911 (Johns Hopkins University protocol).

      Gluten-free: This is no longer considered a fad. It’s worth trying as a whole family. I have not once seen friends/family unaffected by the trial– people universally have told me they feel better as a result.

      Best wishes and please let me know if I can be of any basic voluntary assistance,
      Katy

  29. Atypical OCD
    While this site isn’t necessarily for children, it’s an entire site dedicated to a type of OCD where the compulsions are all mental. Ruminating to the point of dysfunction. I hope it might be helpful. As your son gets a little bit older, you might want to consult with Dr. Steven Phillipson, who is the foremost expert on what is typically termed “pure-o.” Hope this is helpful for you. Wishing everyone in your family well.

    Note from Michael: Thanks. I appreciate that. I will check it out.

  30. Our thoughts from Sydney, Australia
    Hello Schofield family,

    I was watching Dr Phil one day and saw your story. I then bought your book straight away and finished it in 1 session. Your story touched me deeply.

    My sister in law is suffering with an undiagnosed personality disorder. Over the past 5 years, she has been put on many different medications and has even spent 4 weeks living in a psychiatric facility where they tried ECT. Nothing has cured her and she feels her “disassociation and non reality” will never get better.

    You remind me very much of my father in law. He too, feels a special bond with her and will not stop until he has found a way to make his baby ok again. Jani is 10, caroline is 21 – but the feelings of protection are the same.

    I really wish your family all the very best & think you and Susan are remarkable people. Stay strong.

    Note from Michael: If your father in law is interested, I would be happy to talk to him. There aren’t a lot of men in this situation (at least who stay the course). My email is michaeljohnschofield@me.com.

  31. Prozac
    Reading about Bodi was like hearing a description of my daughter and that magic moment when prozac freed her from her crippling fear. It’s still not easy but 5 years in with 2 dose increases as she has entered puberty it was still the best thing we ever did for her. My biggest regret is being so resistant to starting drug treatment for her. We do B-6 as well a big dose around 200mg daily you may want to ask your Dr about that it is suggested for girls to help stabilize the mood swing due to hormone flux but I think I remember it being suggested for OCD and circular thoughts. We use it as a bolus for deeply stressful events we can anticipate.

    Note from Michael: Thanks for the tip about B6. Jani is heading into puberty and we are seeing hormonal issues. Due to her psychosis, Jani can’t take SSRIs for her OCD.

  32. OCD with hallucinations
    Hi Michael,

    First – bought your book last week (after not being able to put in down in the bookstore.) Thank you for sharing so honestly! And second – A few years ago during my post-doc hours I was engaged in family and individual therapy with a young man (about 11 years old) with severe anxiety who was beginning to display paranoia and demonstrate visual hallucinations. I was worried about psychosis – but after a long evaluations with a very competent psychiatrist he was diagnosed with OCD. I did not know at the time that severe OCD actually can present with delusions and hallucinations. Here is one article: http://www.ncbi.nlm.nih.gov/pubmed/18227743

    Hang in there! You have two very beautiful children. And they have wonderful parents.

    Note from Michael: Yes, that is why we thought Bodhi might be schizophrenic until OCD came up. I too did not know that OCD can present similar to schizophrenia.

  33. Michael- have just finidhed reading your book and just santed to say how smazing you are. Yours & susan’s experiences help put into perspective the ‘bad’ days we sometimes have. I am just scrolling through your blogs and reading also of Bodhi’s issues; i am so sorry you have to deal with more, however another bow to your arrow. Thankyou for sharing, your book was amazing and I hope to continue to follow Jani’s story. All the best to you all.

  34. Hi! I learnt of Jani through youtube and have been reading your posts. I don’t know if you are aware that there is medication that can delay puberty. I am not a doctor nor in a medical related field, just a curious person who reads a lot, but I know this medication is being suggested in cases of gender identity disorders to allow teenagers to have more time and maturity before taking life changing decisions. Maybe this would buy Jani some time to grow and become more stable before she has to deal with her hormones 🙂 It’s just a suggestion, if you would like to mention it to the doctors…
    I wish you and your family the best, don’t ever loose hope, you have beautiful kids and have built an outstanding family, that gives me (and many others, I think) hope that we too can be loved and accepted for what we are =)

    Note from Michael: Thank you for the info. I don’t know if we want another medication to slow puberty unless it becomes necessary to her safety. So far she is handling it okay. Not perfect, but okay.

  35. OCD & Jani
    Hi Michael,
    Is it possible Jani has OCD and not schizophrenia? Intrusive visual images (a form of obsession) might be described by a young child and even reacted to as if the child were actually seeing the images. Since most of Jani’s hallucinations have been visual I have wondered about this for a long time.

    Note from Michael: It’s pretty unlikely. They certainly have similar symptoms but the hallucinations are far more long term than with OCD. Also Jani’s psychosis gets worse on medications that usually work against OCD, like SSRIs. So we focus on treating the psychosis and not the OCD symptoms that may indeed be comorbid. However, given the reluctance to diagnose with schizophrenia she would have been diagnosed with OCD if that were an option. Also her behavior is not like other individuals with OCD I have met, including Bodhi.

  36. Just thought I’d say hi…
    I just thought I might say hi and good luck with Bodhi, My aunt has OCD she obsessively saves little candy wrappers and tinfoil scraps. I learned Jani through YouTube as I’ve noticed many people have. I found the story so interesting because I knew Paranoid Schizophrenia could strike young children but I’d never heard of any other form of Schizophrenia striking young children. I have since become somewhat obsessed with following Jani’s story. This is my first time on the blog though. I hope the medication works for Bodhi.

    Note from Michael: Thanks. Bodhi is doing pretty well. The small prozac dose has really helped with the OCD. He’s doing well.

  37. Hi Micheal,
    What an amazing story you have to tell..one of strength, perseverance and real love for a child and family. I read your book in a day (snowed in up here in New Hampshire).
    I was particularly drawn in to your experience with Jani’s first grade IEP team. I am a behavior specialist and certified in general special education and hold an advanced endorsement in emotional and behavioral disabilities. Reading about your experience, I was really disheartened to hear how the simple placement of the educators at the IEP table were not more thoughtfully organized. You were set up to feel defensive and alone at that table when you walked in the door!

    My training is primarily in working with students who have behavioral issues in and of themselves versus a struggle with mental health issues (although one could argue they are always interwoven in some way). I’m wondering if you have come across any reliable, effective resources for educating students with mental illness. I have found that in the 15 plus years that I have been in this business, there has been a real shift from the “naughty” kids that needed behavior modification and the kids with MH issues. It has been more and more difficult for educators to tease out the unwilling from the unable. This can make a public school setting really difficult for them, their families, faculty and the other students. I have a real passion and drive to make things better for these students and I consider a large part of my job to be a resource and support to parents.
    I appreciate your thoughts.

    Note from Michael: There aren’t any educational resources for MI kids but a major initiative of the Jani Foundation is to create some successful models. I would love you to join. You can email me at michaeljohnschofield@me.com or message me at http://www.facebook.com/janifoundation.

  38. Response to book
    Hello Michael

    I find it hard to frame the words to express how your book affected me; to say that the depth of your love – and that of your wife – for your kids, as revealed in your book, is inspirational just doesn’t seem adequate.

    My daughter has been assessed as autistic. We’ve tried various ‘alternative’ approaches. (My dad suffered from severe depression, tried conventional treatment for years with little success and this has very much coloured my attitude. I appreciate, though, that other people very much value such an approach.) We’ve focussed on dietary changes for some time and, while I can’t say this has proved really productive, I still feel that it might just be an answer (or partial answer) for some. You might perhaps be interested in’Gut and Psychology Syndrome (GAPS)’ by Natasha Campbell-McBride MD: http://www.doctor-natasha.com/dr-natasha.php although, in skimming previous blogs I know that you aren’t keen on the dietary angle. (It’s worth noting that there are variations on this theme – Dr Campbell McBride recommendations aren’t identical to that of other alternative practitioners.)

    I wish you all the very best for your family’s happiness.

    Mary

  39. Hello! I am bipolar(or was) and have relieved my symptoms through food allergy removal ( wheat,dairy, maybe eggs/soy), healthy lifestyle(exercise) and diet, and high quality vitamin supplementing(omega 3, b-complex, multivitamin,folic acid,magneisum/calcium, amino acids and more. You should research something called the GAPS diet. It could be of great use to your whole family!

    You can greatly improve your symptoms with orthomolecular therapy!

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