conuly: (Default)
conuly ([personal profile] conuly) wrote2007-03-28 10:51 pm
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And you know, that whole post was just an excuse to post this link

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.)

[identity profile] kibbles.livejournal.com 2007-03-29 03:26 am (UTC)(link)
Yeah one of the reasons I am learning so many techniques to help Ted out is honestly I don't want him to rely on his vest, because of the stigma.

Another reason is the vest has to be taken on and off every hour, and is awkward to deal with etc, but yes, I will be shallow and say it. It's not so much being shallow even as knowing that he could get teased for it.

In a way letting him wear the vest out and about (usually I save it for restaurants when he needs to focus) would give me an 'excuse' for when his behavior is less than stellar. But I don't want excuses, I want results. But that's something else to talk about, parents of disabled kids who make their kids victims and think that everyone should bend above and beyond and think disability = no discipline needed and that pisses me off.

But yeah, I hope Ted learns ASL or Spoken English because both would be easier socially than PECS or another communication device, although honestly something like pecs or another one would be more easily understood than ASL. My preferences for English and ASL though also have to do with a point made by more than one person we deal with -- both those languages are portable, and losing things and carrying things around aren't an issue. I mean seriously I have a hard enough time ordering the damn pictures and getting them organized -- ASL my fingers are always with me, English, my voice is always with me.

I wonder if I would still be as open as I am if I was in NYC, a place that seems to keep the disabled on the fringes. He'd probably be doing ABA crap, that much I bet. :/

[identity profile] kibbles.livejournal.com 2007-03-29 08:05 am (UTC)(link)
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).

[identity profile] kibbles.livejournal.com 2007-03-29 03:26 am (UTC)(link)
Yeah one of the reasons I am learning so many techniques to help Ted out is honestly I don't want him to rely on his vest, because of the stigma.

Another reason is the vest has to be taken on and off every hour, and is awkward to deal with etc, but yes, I will be shallow and say it. It's not so much being shallow even as knowing that he could get teased for it.

In a way letting him wear the vest out and about (usually I save it for restaurants when he needs to focus) would give me an 'excuse' for when his behavior is less than stellar. But I don't want excuses, I want results. But that's something else to talk about, parents of disabled kids who make their kids victims and think that everyone should bend above and beyond and think disability = no discipline needed and that pisses me off.

But yeah, I hope Ted learns ASL or Spoken English because both would be easier socially than PECS or another communication device, although honestly something like pecs or another one would be more easily understood than ASL. My preferences for English and ASL though also have to do with a point made by more than one person we deal with -- both those languages are portable, and losing things and carrying things around aren't an issue. I mean seriously I have a hard enough time ordering the damn pictures and getting them organized -- ASL my fingers are always with me, English, my voice is always with me.

I wonder if I would still be as open as I am if I was in NYC, a place that seems to keep the disabled on the fringes. He'd probably be doing ABA crap, that much I bet. :/

[identity profile] kibbles.livejournal.com 2007-03-29 08:05 am (UTC)(link)
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).