Childhood onset schizophrenia steals autism’s lunch money

There are a lot of things that have happened to me as a result of Jack’s autism that I consider positive.  One is a new affection and mother grizzly style protectiveness for special needs children living with everything from physical handicaps to mental illness.  I first heard of childhood onset schizophrenia from a friend from the blogosphere whose son has it.  A couple of months ago I caught part of a program about it on one of the Discovery networks, specifically the story of a little girl named Jani Schofield.  My friend has been supportive of our journey and this blog, so I was happy to have a chance to learn more about it.  I was instantly in love with this great kid, who couldn’t trust her own mind.   

Yesterday, I happened to recognize the family as I was flipping past Oprah.  Let me be clear, I only watched Oprah because Jani was on it, and I definitely am not linking to anything Oprah in this post.  However, I found watching Oprah think she was going to call the shots in an interview with a 7-year-old schizophrenic, then watch Oprah realize that Oprah was wrong, possibly the most entertaining thing I’ve ever witnessed, AND SO CAN YOU!  It’s all over YouTube.

Jani Schofield

Jani wasn’t diagnosed until the age of 5, but she has shown symptoms since birth (and they’re quite apparent in Schofield family home movies).  Almost all of the challenges her parents, Michael and Susan, describe regarding caring for a child with a neurological condition ring true for our experience, yet after watching the footage I know that our experience doesn’t begin to compare. 

It’s easy to see that without schizophrenia Jani is a sweet, incredibly bright little girl, but her inevitable psychotic episodes are unpredictable and dangerous.  In the interest of their 2-year-old son’s safety, the Schofields have actually had to resort to living in 2 one bedroom apartments in the same complex.  There’s Jani’s apartment and her brother, Bodhi’s, apartment.  They do things together as a family in Bodhi’s apartment, but they keep Jani’s apartment as a safe place to go when that’s necessary.  The strain that puts on a marriage should be obvious.

Jani describes her condition quite articulately (and probably better than any doctor could).  She lives in 2 worlds, our world and the world where her imaginary friends (the good ones and the bad ones) live.  She often refers to a place called Calalini that she says borders the two worlds.  The challenge for Michael and Susan is to find things in our world that appeal to Jani enough to make her want to stay here.  Jani has attempted suicide twice.  Take a moment and imagine living with the daily fear that your 7-year-old will try to take their own life.

Also heartbreaking is that some of Jani’s imaginary friends, the “bad” ones, tell her to do bad things, and she is incapable of completely resisting them.  This leaves her often feeling like she is a “bad kid”.

While most parents rejoice at those moments when their children are quiet and absorbed in an activity, a fleeting moment of peace to remember forgotten parts of you beyond the parent, these moments are perhaps the scariest of all for the Schofields.  If they don’t keep Jani constantly engaged in this world, her hallucinations take over and a psychotic episode ensues.  This is what every waking moment of her day is like.

The Schofields both admit to being on anti-depressants (duh), and Michael bravely admits to one suicidal gesture.  When I think about how dark my own thoughts have gotten on Jack’s bad days, then remember that our bad days aren’t even comparable to the Schofield’s everyday, I’d be stunned if they weren’t depressed.

I realize I’ve painted a pretty grim picture of their situation.  I encourage you to visit their site to get a better picture of the challenges and joys of Jani’s life.

In finding links for this post I, not surprisingly, found the spectrum of stupid advice for and judgement of the Schofields.  Possession, dietary solutions, her mother didn’t bond with her.  Idiots.  The most infuriating to me were accusations of exploitation on the Schofield’s part.  Like they’re the Gosselins or something.  No.  They’re trying to raise awareness.  After a violent episode at school, they had to actually let Jani become a ward of the state to get her into UCLA just to get a diagnosis.  If you’re thinking of leaving a comment along the exploitation and unsolicited advice vein then save some time and just go to hell.  On your way, thank God because it’s only by His grace that this isn’t your family.

P.S. Peter Saarsgard totally plays the dad in the movie.

crossposted at snarkandboobs and Audacity to Cope and KillTruck

About Kill Truck
KillTruck is a wife, mother, blogger and native midwesterner now living in Eastern Washington state. She writes about politics, pop culture, parenting, wifing and a few other subjects she has no authority to write about. She has macabre fascinations with prostitution and/or cannibalism. In her free time she enjoys eating and/or drinking her feelings, liveblogging Lifetime movies, thinking about Scott Brown and mocking things she doesn’t understand.

12 Comments on Childhood onset schizophrenia steals autism’s lunch money

  1. My heart goes out to them.

    I know Dan is going through this with his son Aidan. Fortunately not to this degree. My heart goes out to Dan too.

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  2. Dan Collins // 06/20/2010 at 9:19 am // Reply

    Thanks, Joe. He’s doing really well, and it’s just life.

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  3. Yeah, it’s not a pissing contest between parents w/ kids having different disorders.

    I try not to do the whole “we’re doing better/worse than you”, definitely within my own family, and most definitely amongst people I don’t know at all. Everyone has their own trials.

    And yes, one does get tired of the unsolicited advice. It’s bad enough with the “normal” kids.

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    • “Yeah, it’s not a pissing contest between parents w/ kids having different disorders.”

      Totally, and our experience has taught me to apply that to life in general.

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  4. Our son is non-verbal and diagnosed as autistic, but this is interesting because the symptoms are similar. We, too, experienced his almost complete inability to sleep for the first 2-3 years and the relief that came from (in our case) driving him around in the car for hours each day. He was also non-violent until age 3-4, but then he became so violent it took 2 adults to restrain him. (For medical procedures, it took more Versed to sedate him than it would take for drug-addicted adults.)

    Is there a good place to learn more about this? I wonder if our son’s aphasia has made us overlook another diagnosis.

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  5. enoch_root // 06/20/2010 at 8:58 pm // Reply

    If you met Aidan, you would be blown away. He is perhaps the most well-loved of all of the cousins (of which there are 16 or 17 all told). And the reason is that he is really a remarkably loving young man. Incredibly engaging. And wickedly smart. Oh, and did I mention funny – a gifted artist and story-teller as well. The world would be poorer without him – that’s for sure. Dan and Mary can speak to it first hand, but the early days, from what I recall, were incredibly dark. They searched and searched for someone to put a name to his condition. But Childhood Onset is so very rare as to exist primarily on the book shelf. I remember either Dan or Mary telling me the immense relief they had … when finding out specifically what Aidan suffered from. This horrific diagnosis – and yet, there was relief – in at least having a name for it.

    So, DRJ, hang in there. If you sense the current diagnosis might be off, you should really seek a second, third, and fourth opinion – until you are satisfied. I know that once Aidan was diagnosed, a world of treatment opportunities presented themselves that would not have otherwise.

    Prayers. And hang in there.

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    • We were told Jack was definitely not autistic. That left “something else” and/or my incompetence. I remember thinking, “I wish he was just autistic, then I would know what to do.”

      Proper diagnosis is huge.

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      • Yeah…. just knowing a child is autistic doesn’t mean we know what to do.

        We have a label. Yippee.

        It disturbed me seeing that video, b/c D does some of the behavior in terms of putting hands over the ears…. and he doesn’t focus on the world that’s here. It’s so hard. We talk about him talking to the ghosts in our house… it might not be far from wrong.

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        • I’ve found the more I can learn about how my kid’s brain works the more I can help him, regardless of the label.

          As far as autism goes, the best book I’ve read was “There’s a Boy in Here” by Sean and Judy Barron. Sean is an autistic adult and Judy is his mother. They alternate chapters giving their recollection of events from his childhood. He explains what was going through his head during his bizarre behaviors and obsessions.

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  6. Thanks for sharing such valuable information. I’d also like to let everyone know that if you visit my blog you can receive a copy of the audio interview I did with Dr. Michael Goldberg, renown autism specialist. He has helped my son tremendously and I’d like to share his methods with as many people as possible. Thanks. ?Dorothea

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  7. haveaniceday // 10/06/2010 at 2:54 pm // Reply

    You tube has some very good autism videos under “severe autism” that help parents who are struggling with severe issues like self injury, seizures non verbal communication. Hope this helps. Interesting blog about childhood schizophrenia. That poor family must be going through hell. How are they now?

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