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MichaelJohnSchofield34 karma

We have. Duke University took all of our blood and sequenced our genomes. Specifically, they were looking for "deletion events," sequences of DNA that Susan and I have Jani or Bodhi do not. There are deletion events but they don't know what they mean and they are not necessarily in areas associated with schizophrenia. We did learn that Bodhi's deletion events and Jani's are NOT similar.

MichaelJohnSchofield28 karma

I hope so. It still worries me, mostly because of Jani's struggles with hygiene anyway. Her being able to full take care of her hygiene needs would be a huge step and relief for me.

MichaelJohnSchofield25 karma

What they are referring to is the original "about me" section of my old blog. When I started writing, long before we any publicity, I expected what I was dealing with then, which was people, even doctors, who felt that Jani's issues were caused by a "lack of discipline." A lot of people used to tell us that all Jani needed was a good spanking. What I specifically wrote was something to the effect of "Sometimes, in frustration, Susan and I hit Jani as hard as we could." I have a tendency to be a bit hyperbolic in my writing. I was referring to one or two occasions where after being hit all day by Jani we lost it and spanked her. Once it became clear that Jani could not control her actions, I felt incredibly guilty about that and that guilt motivated what I wrote.

But to clarify:

  1. We never spanked or struck Jani until she became violent with us in 2008.

  2. We obviously did not hit her "as hard as we could." Given the sheer number of doctors she has seen, social workers, etc, plus her regular pediatrician appointments, that would be noticed, not to mention she was 40 pounds and I was 180. If that were true, I could have killed her.

  3. In the book, I actually went out of my way to play down Jani's violence. Only one chapter is dedicated to it and every action by Jani in the book was absolutely true.

  4. In early 2009 the Department of Child and Family Services told us that Bodhi must be protected from Jani until he was five years old. Our choice was either to send her to out of state residential or Susan's idea of the two apartments. Bodhi could not explore his environment without Jani potentially raging at him. We had to separate. The violence was real. Jani attacked the DCFS worker in UCLA the first time she went to met her.

  5. Finally, Jani never actually managed to hit Bodhi because we never gave her the chance. We worked all the time to keep him safe until the two apartments.

MichaelJohnSchofield25 karma

Jani has as much understanding as we have been able to reinforce. She knows she has schizophrenia. She knows what this means to her. She explains it as "I see and hear things other people don't see." The most difficult part for her is not the hallucinations (which are pretty benign) but the thought disorder. Personally, I feel thought disorder is the worst part of psychosis. Basically, thought disorder is when you believe something is right when it is wrong and vice versa. Right now, after she gets her medication, say if we were a little late, afterward she will recognize she needed it but it is going to take time and maturity for her to recognize when her thoughts aren't logical. People like Elyn Saks inspire me that that is possible. As for Bodhi, Bodhi knows there is something wrong. He wants to be comforted. But neither he nor we nor the doctors really know what it is other than autism. His current diagnosis is autism with intermittent explosive disorder.

MichaelJohnSchofield23 karma

Not really, at least right now. Sometimes she will complain about having to take them and pretend to run away and hide in her room but she doesn't physically resist. Hopefully this will continue because as she gets older there is no way to physically force her to take them. Luckily for us and her, she has never really resisted. She is good about taking her medications. She knows the names of each one, what they do, and how much she is supposed to take (although we still administer them).