Thursday, May 22, 2008

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.

3 comments:

Lauren said...

Oh, your post made tears spring to my eyes. I know Jonah can be sweet--I don't get to experience it, but it's so beautiful watching him love you so much. It'll still be nice seeing him back completing the whole family when we visit. It's seemed a little empty without him. For better or for worse, he is definitely a driving presence chez Lutz.

Jen Nelson said...

Amy,
I am having the same sentiments as Lauren. Knowing that Jonah is happier and plugging through this difficult, but helpful time in his life puts a smile on my face. He was as big a part of my life for so long, as I was a part of his. You know, I didn't expect to miss him or your family the way I did after I left. You have a presence and love in that house that is infectious and I'm glad to have been able to experience it.
Thank God for the perseverance you've put into Jonah's childhood. I am so happy to know that he has many happy days ahead. I hope to experience his sweetness in it's fullest form when he gets back. As I said once, he's my friend and I miss him.
Happy belated Mother's Day to you and Keri! And congrats to her for the new addition!


P.S. I love this blog!

Rael said...

Amy,
Thanks so much for sending me this link!!!!! I am so happy to hear the good news. I knew Jonah was a sweet loving kid, unable to control him self at times. I give you credit for parting with your son for his best intrest and seems to have paid off. I'm glad he will be home soon!
Rael