Jonah Update

Jonah has been at Kennedy Krieger for almost four months now, and as you can see, he's changed a lot. He lost twenty pounds due to a combination of med changes and crappy hospital food. For a while there, Jonah was looking so much smaller and more vulnerable with each visit that Keri kept joking that one day we'd show up and he would have turned into Aaron.

More importantly, Jonah's mood has been pretty well stabilized. It turns out, as his psychiatrist here suspected, Jonah has bipolar disorder along with his autism. Lithium and abilify have drastically reduced his aggression, irritation and spontaneous crying. Although he can still be provoked into fits of mostly self-injurious behavior (hip-banging and hand-biting) when his therapists deliberately try to push his buttons, when he's just hanging out on the unit, his violent outbursts have pretty much dropped down to zero. And the members of his behavior team aren't resting on their laurels - they're still working out a behavior plan to clean up the lingering problems. Jonah definitely learned some bad habits over the past six years since he started school.

Still, as happy as we are to finally understand the neurological reason behind all those violent tantrums, the bipolar diagnosis definitely scares me. The cover story in this week's Newsweek is about bipolar kids - kids whose conditions aren't compounded by autism - and the situation seems pretty bleak. One boy has been on 38 different meds trying to control behavior that sounds a lot like what we've seen from Jonah in the past - meds that have only partially controlled his rapid mood swings, and haven't completely prevented suicide attempts and other self-destructive behavior. The piece closes by acknowledging that this boy's most difficult days may still be ahead of him, as he attempts to navigate the hormonal crisis that is adolescence. I've also been reading "An Unquiet Mind," a book by Kay Redfield Jamison, a psychologist at John's Hopkins who has written extensively about her own lifelong struggle with manic depression, and she describes moods so black, and others so frantic, that I can't even imagine what Jonah has gone through, or what lies in store for him in the future. It's ironic isn't it? As Keri pointed out, maybe autism is the least of his problems.

But this kind of speculation is counter-productive, I know that. For now, we're just relieved that Jonah seemingly has found some peace. Keri, Matty and the boys were in Baltimore last week to see a Red Sox-Orioles game and they took Jonah out to dinner afterwards, and Keri told me the next day it was the first time she really saw how sweet Jonah is. I told her what I always believed: that the sweetness and affection represented Jonah's natural temperament, and the tantrums were aberrations - albeit frequent aberrations. Hopefully, when Jonah gets home (at the end of June or at the beginning of July, it looks like), that sweetness will be obvious to everyone, instead of something many of our friends and family members could only experience indirectly, through our own accounts and assurances.