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 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.