And you know, that whole post was just an excuse to post this link

[conuly]

and I had to forget, right? Gah!

It's all on adaptive-thingies (I hesitate to say technology, because that's not all of it), and the stigma of them and whatnot.

(And if I have to come up with another synonym for thing, I'll scream. I should just buy a thesaurus. We've got four or five of them, but they're all in the basement.)

Comments

[conuly]

Have I ever sent you to read what wakasplat's written? She's pretty obviously autistic - doesn't speak and so on - so what she says might be useful to you, stuff about how she lives and whatnot. (And it took me forever to realize that people I thought of as four separate entities, because they had four separate websites, were all her!) Her main blog is at this clicky. And she uses another form of communication, I believe, which might, again, be useful to you. But I don't know if she's replying to comments right now, so you might end up having to search a bit.

That said, and I know you don't want to hear it anymore than anybody does, because it's the harder way for sure - in the long run, there's no profit to moving to be like the rest of the world. The only way progress is made in any area is that we force the rest of the world to come to us (whomever us happens to be in any given situation). You can come up with your own various analogies, right?

Having him wear his vest when out and about would make it easier for him to function in a way that's useful to you and the world. That's not an excuse - you're saying "I know this is hard, and I'm making it easier for him to manage" not "I know this is hard, and I'm going to avoid having to ever deal with it".

As for "he could get teased for it"... *sighs* Speaking as somebody who's a lot less visible here - he's going to get teased no matter what. And that fucking sucks, because people shouldn't act like that. But, like I said before, I don't see that there's a profit in caving to bullies. If somebody insults your kids for their background, for their family, you don't tell them to hide it - you're proud of them for standing up for themselves, I've seen it. This isn't different in any qualitative way.

But it's midnight here. I can't even spell correctly, there's typos all over everything :( I'll be able to post more coherantly (and, I hope, politely) tomorrow.

[kibbles.livejournal.com]

Yeah I read her stuff when I'm in read mode -- we've been very active lately so I don't get to do the reading I want.

I don't necessarily want Ted to be like the rest of the world, I just want him, if possible, integrated enough so he doesn't have to be institutionalized. The more independent he can be, the less likely he is to be stuck in an institution. I don't like them, from what glimpses I've seen of them. And I'm talking about a town that does them decently -- imagine if we left this place! Yuck. So it can be all about changing minds and making a difference and all that, but at the end of the day my child is not a social engineering project -- he is a human being and lives on the planet with other human beings and if we can combine a decent life for him with some progress towards attitudes and acceptance, that's fine. But I'm not going to use him as some poster boy or windmill to tilt at. Not that you've asked me to do that, but I see it some times with people and sometimes kids just have to be kids. Not victims, not diseases, not syndromes, not disabilities. Plain ole kids.

Oh! Another thing about the vest is he will outgrow it. They don't make 'em for grownups. Just the weighted vests. I had read about an air pressure vest that was being worked on, I check now and then to see if that's out, because I think they were making it for larger sizes. It's just one thing in our bag of tricks and believe me if that was all that worked, and nothing else did, that kid would LIVE in it. :D http://www.southpawenterprises.com/store/bear-hugs,Product.asp is the vest by the way and it's kind of hot and scratchy. But over clothes, in school, it helps focus, and in restaurants it cuts down on pacing, which I only care about in sit down places like pizza hut. If my kid pacing bugs you in McDonalds, your expectations are clearly too damn high for fast food. :P

And if you read my journal you know damn well I don't teach my kids to cave to bullies. :D But I wouldn't go out of the way to make them targets, either, especially if the kid has limited communication problems and ways to stand up to the bullies, although knowing Ted, he'd probably just punch them in the mouth. Hard. He's pretty damn tough, Dan says he's gonna be an ironworker. :P

I want for Ted what I want for my other two kids. A life as independent and happy as possible. The alternatives aren't so happy. And hopefully we can get there, and get there the most dignified way possible. Meaning no drugging up/therapizing him up into some robot. That would be (possibly) independent but not happy.

When we took our millionth walk today, in the dark, he was skipping down the street and I thought, yeah, I could take care of him forever as long as I knew in my heart he was THIS happy. But I'm not going to be around forever. So there will be growing pains. But you know what? The other two aren't happy 100% of the time either. (OHGODESPECIALLYKAYLEIGHWHOISELEVENANDHATESEVERYTHING)

I'm rambling too, it's 3am and Ted has gone totally off the rails. I finally had to get out of bed or I'd have no hair left (he was yanking it out of my head).