Saturday, August 9, 2008

time out for an OCD reflection

I haven't really talked about my dear daughter here yet, because I meant for this blog to be about asperger's. But I was commenting someone else's post tonight that was partially about the sense of purpose their previously challenging son was getting from enlisting in the army and graduating from basic training, and it really touched me as I related it to my own challenging child, the eldest. When she came to us, she was already a half grown teen, and there was a lot of emotional baggage that came with her. But one set of symptoms was really apparent to me, even though I didn't have a name for it at the time: obsessive compulsive disorder. This is a very serious developmental problem that is often a symptom of aspergers and autism, but lots of other people have it too.

It's been quite a journey learning about it, and knowing now that I am the only person out of five in my house that doesn't have it. If you know anything about it, you know how difficult it can make it to accomplish just the mundane details of everyday living. I'm not going to get into a full on description of it here tonight, but I felt like my dd deserved a tribute for the very big achievement she made recently. This in the face of her very active OCD, which in her case includes crippling agoraphobia (fear to leave the house and/or go out in public), claustrophobia, extreme anxiety disorder with panic attacks, major depression, and a truly absurd condition called trichtilomania (google it if you're interested). And she did it all without benefit of an IEP! We didn't have time. But she did have 504 plan accommodations, which were far from adequate, but I doubt we'd be celebrating now without it. Here was the comment I left on the other post:

This summer I watched my daughter's graduation ceremony from high school. She has horrible agoraphobia (thus I haven't been to church recently), and she could have chosen not to participate in the ceremony if she wanted. Even so, I pretty much held her hand all the way through it until she was up on stage, and there was a school nurse stationed nearby, but I was very proud that she had made the commitment to stand up with her peers and acknowledge what for her is a profound milestone.

But the sense of purpose that you were talking about, it was the first time I had felt that so acutely for her. She had made the original decision to return to being accountable to a school authority (after we adopted her, she home schooled for several years), and even though her curriculum was delivered though cyber technology in our house, it was still a really big deal for her to have to complete state set standards, deal with deadlines set by someone else, and communicate with her teachers and other strangers in the school.

The graduation ceremony was the first time she really met some of her classmates, but there was a lot of satisfaction in watching them all rise as a group and hearing the speaker discuss the expectation of their contribution in the world. You could see on their faces how they felt like they were part of something important.

This is a school that really emphasizes leadership and community service, and it really affected her in such a positive way in terms of helping her develop an avocation for her life. I really have to give all the credit to god for leading us to this school and helping her choose to enroll, plus seeing us through all the ups and downs as she finished the program.

I had been so afraid that she might never even make it this far, and I still have a lot of days when I wonder what the best way is to try to access her potential, but this is one of those situations where I have had to really let go and let god, and try to feel his peace.

Crossroads is definitely a good way to describe our current position, but I just have to keep the faith that he will continue to guide us no matter how apprehensive I might be that our hold on something finally positive is very tenuous.