August 26, 2009

On Child-Onset Schizophrenia

And to think some of my worst days as a parent are when K2 pulls all her and her sister's clothes out of their dresser for the third time.

After escalating fits of hallucinations, violence, and uncontrollable outbursts and behavior, Michael and Susan Schofield's daughter January was finally diagnosed with child-onset schizophrenia when she was five.

Which put the first three years, where Jani didn't sleep more than four hours at a stretch, and only then after 14 hours/day of non-stop overstimulation and engagement, into a new perspective.

As Michael explains on his blog, the parts of their days that aren't spent trying to help their daughter learn to hold onto the real world are spent fighting to secure the continuity of her health care week to week [their insurance company is Blue Shield of California, just so everyone knows who is living up to their commitments], and her education. And they're raising their second child in a second apartment located, for safety reasons, across the parking lot.

Holy smokes.

June 29 LA Times article: Jani's at the mercy of her mind [latimes via]
Aug 3 dadblog post: I wish you'd never learnt to weep []


This is exactly what I was talking about when I said I was afraid of seeming callous in a recent post about NICU-caused PTSD. I am humbled by what these parents have to deal with, will have to continue dealing with. My heart goes out to them; they have to deal with so much bullshit on top of the illness of their daughter. Makes you think we might need a different healthcare system. Makes you wish we knew a lot more about the human brain. Makes me selfishly thankful that all we've had to deal with is epilepsy & pneumonia (knock on wood).

What a heartbreaking story. That poor family!

That is pretty sad story :( Hope nobody else repeat it.

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