I've mentioned before that I'm label averse, so what gives with me getting my son an Official Label? It's prompted some reflection, I can tell you.
As well as being label averse, I'm a champion justifier, and I think I've justified this quite well. I don't think I accept that Aspergers is a real label. I certainly don't accept that it's a "disorder". It's a different way of being, one that the world we live in doesn't make much room for. This is, obviously, a description that applies to a great deal of things that are referred to as disabilities. I've been slowly shifting my perception of a lot these issues for a while now, but there's nothing like living with one of them to push you that bit harder.
Charlie needs this label, because the world he lives in is so bloody intolerant and inflexible that spending a morning of kindergarten (prep) class filling a page with musical notes will generally get him a much less attractive label of "uncooperative" or "doesn't follow directions" or some such. It didn't, as it happens, because he has a most wonderful kindergarten teacher, but he's not likely to carry that luck all the way through school. He needs a piece of paper to say "Please let me be me, because I have a label you have to respect". That's a pretty sad indictment of our school system.
I need him to have this label to access some help for parenting a kid like him. His behaviour doesn't fit the standard parenting manuals, and why would anyone want to broaden the ideas presented to cover children with a "disorder"? A parent will clearly need specialist help with that. Of course, kids like him are very common, and always have been, but their parents have largely muddled through, finding things that work by trial and error. I wonder how many kids' parents couldn't find the right path, and how badly some of those kids suffered as a result. I wonder if Charlie's uncle might be one of them, but we'll never know. I wonder how many of them might have been helped if conventional wisdom had included some diversity in the patterns of kids' behaviour.
So I'm seeing this label as a way of demanding respect and caring from a world that finds him inconvenient, but I'm also not really accepting it as a label. It's a diagnosis, or something. It's a means of being understood, until such time as the world moves on and accepts that we don't all think alike, or socialise alike, or even perceive the world alike. Hopefully one day he'll just be Charlie again, not because he's changed, but because the world has.
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There's no doubt about it, a label helps when it comes to getting the system to bend for kids that don't fit the standard mould. David's "diagnosed anxiety disorder" makes asking for accommodations so much simpler.
ReplyDeleteWhat have you told Charlie and what's his reaction been?
Kind of ridiculous that you need to wave a doctor under their noses to accommodate a kid's needs, isn't it?
ReplyDeleteHis ability to utterly ignore anything which doesn't interest him has meant that he isn't at all curious as to why we spent 2hrs with the doctor. We told him in advance that we were going to see the doctor to help him with the angries, which he was in two minds about, but didn't protest much (although the day off school probably helped).
When I suggested that the doctor thought that maybe he thinks a little different to other kids, he considered it for a moment and said "I don't think so" with that matter-of-fact voice that could have been the answer to "do you think it's going to rain today?". So, yeah. I guess we'll see what happens when he actually starts doing stuff, rather than hanging around adults talking about stuff he doesn't care about.
Argh - just lost my whole comment because Blogger won't let me log in!
ReplyDeleteEducational accommodations were essential for us through primary school. They've been less helpful in high school, especially the last few years, although the exam provisions (quiet room in the library rather than big echoey hall, computer rather than handwriting) are essential for him.
The Label has also been helpful over the years in getting some well-meaning folks to just stop insisting that he should join the others in doing stuff that he's Just Not Interested in.
A few people seem to have been having trouble commenting, and it seems to happen to me in other places pretty regularly too. I've taken to copying most of my comments before I try to submit them!
ReplyDeleteI don't think it would have been a good idea to avoid the Label, but I've already seen my husband start to view Charlie's behaviour through the lens of the Label, and try to interpret everything he does that way. I guess that's always the risk. Oh well, the adventure begins...