Friday, March 30, 2007

The Need to Explain & Clarify

Robert's IEP meeting went very well, and I am so exhausted with relief that I can barely think. The new head of special ed for this cluster was great: professional, focused on the child's needs, interested in the applications with the eye gaze device, etc. It was the first IEP meeting I've been to for a long time that was focused on Robert's potential, and not on trying to define him down and out. It was like walking out of a room realizing that other people, not just you, felt your kid had a future.

People I know casually sometimes say they don't know how we do it--the difficulties, the hurdles we face with Robert are so daunting. I always tell them that we just do it because we have to--there isn't a choice. That seems true enough to me. There's never really seemed as though there were a choice--sometimes the path is grim, sometimes filled with happy surprises. But the fact that there is no choice simply makes you move forward, which is probably the best thing.

The challenges keep shape shifting on us: health problems, behavioral issues, communication strategies are knocked down, broken through--but they keep reconstituting themselves in slightly different forms. It's really tiring. But Robert's personhood is starting to assert itself. With a child who's had so much medical care, and is incapable of detailed expressive communication, you forget sometimes that you need to explain things to him. He has a temper, but he's very stoic and patient in many ways, so you forget the need to explain and clarify to a child.

But I'm remembering to do that more and more, and he responds so well, so positively. He's so in there, inside himself, waiting to be recognized, waiting to emerge. He is very much like a poem, lurking within himself, being shaped and resisting it, then suggesting his own directions.

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