Sunday, June 10, 2007

Robert Update

Trying to get back to posting more often. A long week, this one was--work, doctor's appointments for Robert, school events, Robert's birthday parties (one for family, one for friends). He seems happy. Many days he seems very, very good. We just need to get him going on the communication. For him, it seems such a big leap. Here he's lived his life understanding what's going on around him, but without any viable means of expressive communication other than answering yes and no questions by raising one arm or the other, or by our reading his facial expressions and glances. And now he's presented with this complicated machine which is not spontaneous (as a friend pointed out), but relies on 'calibration', experience, learned skills, etc. It's a big conceptual leap for him to move toward expressing what he's thinking to others. He's never had that ability--he can see others do it. I try to put myself in his position, try to figure out what that would be like, almost from birth (age one for him--he had a handful of baby words when this happened), and I just can't imagine it. I can't imagine how one would get used to that limitation, have it become habitual.

He's a guy, too, an almost teen-aged guy. Guys don't 'communicate', right? Right now, the device is, for him, a means of playing some computer games, which are fun, and a series of work issues. While his special ed teacher is good, others involved in this keep trying to make it as tedious as possible for him. They have to monitor and test him on it, keep records, do 'trials', etc. It drives me up a wall. And now he doesn't like using the one we have at home because the one at school is easier to use. That's a guy for you.

I keep trying to figure out how to motivate him. There's got to be a way.

But, in the meantime, his general gross motor physical skills seem to be improving. He's walking in his walker, better than before, and we spent part of this week up at Kennedy Krieger ordering a new one for him, which should arrive sometime late this summer. And a stander, too.

We talked a little bit about Kennedy Krieger's feeding clinic, which we're taking him to last week in June to be evaluated for their eating boot camp for previously tube fed kids. He said that he wants to learn to eat by mouth again. I'd like to see that happen. I think we're finally at a place with our family life where we could support it. So, we'll see.

Robert has a lot of moxie. I just can't figure out what he doesn't see the percentage in communication right now. Is it a guy thing?

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