If you don't recognize it, that's a slightly-paraphrased quote from "Rudolph the Red-Nosed Reindeer," spoken by the reluctant elf, Herbie. And it introduces this thought about movies and other stories with "different" people of all kinds as their main characters. (Not original to me, but I've been thinking a lot about it lately.) Have you noticed that these characters only become "heroes" or "inspiring" when they are able to transcend their "difference" and "fit in"? One obvious example from the holiday season just past is Rudolph, of course--he (and Herbie, and the "Bumble," and the "misfit toys") only is valued when his "difference" is needed by the "regular" group. He is never valued for the "red nose" itself. But there seem to be an endless stream of examples. Recently I watched "Air Bud" with James. Not a great movie, but again, a kid who's new in town, with no friends, depressed b/c his dad recently died. Does he become part of the group because someone reaches out to him where he is? No, he practices basketball alone behind an abandoned church, befriended by a golden retriever with a gift for hoops (crazy, no?), and becomes good enough that the local team needs his skills. Think "Rain Man," "Forrest Gump," etc., etc.
I don't mean to take anything away from the message that you need to take responsibility for your own happiness. But very rarely do you see a story with a character who is different and the OTHER characters learn to accept her or him as just as "regular" as they are. And it seems problematic to me because these are often movies that are supposedly examples of the success of people who are not "normal," when really they just reinforce the existence of lines between "normal" and "not," instead of broadening the definition or doing away with "normal" all together. (I'd be happy to be enlightened with examples to the contrary.)
I guess I'm extra sensitive about this because we're heading into the "re-evaluation" and "IEP" phase in the middle of James' kindergarten year, and hearing statistics about where he is relative to the "normal" kids, and what kinds of "support" he needs to be successful. Everyone wants to help out, but very rarely is there a sense that schools and communities should adapt themselves to integrate and include the beautiful range of abilities and experiences around them. Rather, we have "individualized" plans which keep kids who are different in a different room, on a different bus, on a different schedule, which (it seems to me) reinforces their idea and experience of "difference" even when it's phrased as "special." More dangerously, it reinforces the sense of difference for the "normal" kids, who are "spared" the experience of interacting regularly and on a human level (you know, like eating, or playing?) with kids who have autism, or visual impairments, or hearing challenges, or Down syndrome, or physical variations from the "norm."
What we have determined this week, having received the interim report on some psych testing James did at the University of Washington, as well as kicking off his "re-eval" phase at school, is that we absolutely are and have to be in the driver's seat on all of this, being clear with everyone involved what we expect and hope for James, no matter what the statistics say. And while it would be great to be back in birth-to-3 services where there was someone who led us through each part and took as much care of us as they did of James, that isn't going to happen anymore. We need help, and we need to find it where we can: in the encouragement of the psychologists at UW to find more activities for James with "typically-developing"--what an obnoxious phrase--children; in the people at church who are willing to treat him as a child first and a "special-needs child"--another obnoxious phrase--second; in the teachers and therapists at school who really do want what's best for him, but also are overloaded; in the friends who are willing to babysit once in awhile to keep our fragile schedule together; in the training sessions and books which attempt to encourage and assist parents of children with various challenges.
And to wrap it up, here's what we've found. Given the suggestion that James responded well in his psych testing to "deferred gratification" (i.e., "you can have your pom pom when you finish going potty") we have been trying more of that this week. While it is almost as exhausting as pushing to get him to do the current thing just by repetition, it seems to work over half the time. So it was a pretty good week. And we heard from all of his teachers and therapists that despite behavioral challenges, he is making progress in speech, balance, academics, etc. And today after dance class, the teacher said he had a great session, and that after just 3 classes, he really knows and follows the routine and stays focused for about 40 of the 50 minutes (after that he's just tired). We also found out that they do birthday parties at the dance studio, which got him very excited. We'll see what happens with that.
This has gotten much longer than I intended, but since it may be another few months before I post, I guess that's ok. And tomorrow's a new month. Happy February, everybody!
