Access: Here's to them
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Sacha, in reply to
There is no accountability
Because that would require valuing disabled children and their families. Or to have properly-resourced, competent advocacy networks.
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When the Education Act was passed in 1989 with Section 8 giving the right for ALL kids to attend their local school, there was also a provision (if I recall correctly) for a parents' monitoring/advocacy group. Didn't happen.
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Sacha, in reply to
Knock me down with a feather.
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Well done for sticking it out, and especially identifying the problems early.
It's taken 30 years for my folks to realise what kind of 'different' I am, and now they're full of regrets about what they've put me through. The only reason they can't fix it now is because they're retired. So the best hope I have now, before I start becoming structurally unemployed, is with the Emerge Trust and Workbridge, and it's slim pickings so far.
From past experiences, if you're thinking of sending an autistic or other special needs kid to an elite private college, the same outcome can be achieved for at least a 99.7% savings. Just buy a blank T-shirt and a vivid pen, write "I'm a dumb and useless retard" on it, and force your kid to wear it every day.
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Sacha, in reply to
That saddens me. Though there are ways through this for you and others, we waste so much effort for no reason.
I want to see in my lifetime a support system that assumes people aren't trying to defraud it. A population who gets us and respects us might take longer.
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Kumara Republic, in reply to
A population who gets us and respects us might take longer.
Especially when spree shooters like Adam Lanza, Elliot Rodger and others keep getting mistakenly labelled as autistic.
In Japan, autistics who fall through the cracks often join the ranks of the 'hikikomori'. I probably would have been one of them if I was actually Japanese and living in Japan.
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Angela Hart, in reply to
I want to see in my lifetime a support system that assumes people aren't trying to defraud it.
me too
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Asperger's Syndrome New Zealand is another excellent and popular Facebook site. John Greally has been running it for years. Valuable and diverse insider perspectives. Parents and allies are allowed in so long as they act respectfully.
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Kumara Republic, in reply to
According to my psych, I might have PDD-NOS as per the DSM-4, as she thought I wasn't fully Aspie. And that it overlaps with a long history of SAD, in large part from early bullying experiences, and the folks thinking making the hammer bigger would force the square peg into the round hole and fix my grades (hence the "full of regrets about what they've put me through" mentioned above).
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Russell Brown, in reply to
According to my psych, I might have PDD-NOS as per the DSM-4, as she thought I wasn’t fully Aspie.
The advantage of the new approach in the DSM 5 seems to me that it can get away from somewhat arbitrary boundaries in diagnosis. It’s a bit like you’re being told you’re not Aspie enough, so you’re “not otherwise specified”.
Let’s just say “neurodiverse” :-)
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To them <drains glass>. And to you all <drains another>. I may not say much here, but I read all the Access threads, and very much appreciate them. I learned a lot from time spent with Leo, both about his particular condition, but also how a functional family deals with a situation that could be for the rest of their lives. It was like a peek 10 years into my own future. Marcus' disabilities are not exactly the same, but the fact of expecting for him to be totally reliant upon us far longer than other children usually are was an excellent heads-up for our own emotional preparation. It's been a long time now since I bitterly lamented our situation. I've come to realize that my ambition all along, to bring up happy, healthy children with good habits remains exactly the same. It just might take longer - indeed it might continue until we're old people in need of support ourselves.
The enormous struggles for support that many have had are things I can only empathize with from a distance. We're lucky in that respect. It's almost like the luck of not having even had the accident in the first place. Which is how it should be for all disabled children (and adults too), that the support for their conditions should be complete and easy to get. Then they are only struggling with the condition itself, and not all of society along with it.
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Thanks again for this post, Russell. So many positive comments too. Nice to know that there are many of us doing that 'family' thing in a different way to what we might once have anticipated. And that's OK.
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Relevant story from a parent: Learning we can't 'fix' our autistic daughter.
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Russell Brown, in reply to
Marcus’ disabilities are not exactly the same, but the fact of expecting for him to be totally reliant upon us far longer than other children usually are was an excellent heads-up for our own emotional preparation.
This is actually the key thing for me. You don't know when it's done or even what being done will actually look like.
It can be hard watching friends' kids start and finish university, or head off overseas or whatever, but that's how it is. You always feel like you could or should have done better. It's inevitable.
It was pretty cool on Saturday night when I didn't want to go to a party/gig near K Road, in part because it would be full of people 25 or 30 years younger than me. But I'd mentioned it to Jim and he did still want to go. So I texted someone I knew who was one of the organisers and asked her to keep an eye out for him on arrival. She did, introduced him to some other people, everyone was really friendly and he had a great time. Much as I enjoy his company on the town, it was nice to know he was out with his peers.
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BenWilson, in reply to
You don’t know when it’s done or even what being done will actually look like.
No, all benchmarks against normality are really just for interest's sake. We've learned to measure progress only against where Marcus was, rather than where everyone else his age is. A lot of progress on things that might be usually expected to develop in teen years can still continue to come out in 20s and 30s. Definitely, the model of kicking the kids out of the nest at 17 is well behind us, and we're really planning on the possibility that Marcus could end up living with for the rest our lives. If he doesn't, great. But it's possible, and it's not even a burden, so long as we're ready for the idea.
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BenWilson, in reply to
Much as I enjoy his company on the town, it was nice to know he was out with his peers.
That is very nice to know. Many steps to get to that point, but there it is. Who cares if it came 10 years later than it might for the others? He just gets to enjoy all that now. He may even appreciate it more than others do, who take for granted how easily it all came, and might be surprised later in life that maturity does actually continue to develop, and as the decades slip by, the rates can vary enormously even for "normal" people.
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This is brilliant: a non-verbal 12 year-old autistic kid speaks (types) for himself.
Turns out he found ABA really boring.
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Some more stories from parents of disabled children. And can we please ban the word 'special'?
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Sacha, in reply to
sounds more like it. would prefer if they actually acknowledged what's really going on first before attending to their comfort.
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Joe Wylie, in reply to
And can we please ban the word ‘special’?
Back in the day I was grateful for the “special class” teacher’s policy of letting the “specials” out 15 minutes early so they wouldn’t be rolled by the regular kids for their bus fare to feed the spacies machines. Of course that last bit gives an indication of how out of date my experience is.
What I appreciated about the best “special” teachers was their BS-free first-hand understanding of what kids actually got up to. Having a Lady Bountiful expert drop by to encourage the “specials” to approach someone in authority if they were picked on was all very nice until a victim tried it, at which point they were introduced to the delightful kiwi custom of “bogwashing” for being a snitch. No joy in taking the issue up with the school, as didn’t I know they’d had a visiting specialist in to empower the “specials” against such practices.
Perhaps a name change might help, good luck with it.
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Sacha, in reply to
It’s the education sector that’s hanging on for grim life to avoid using the word disability.
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Joe Wylie, in reply to
I think I follow that. IMHE it was the word handicapped that freaked out those it was supposed to define.
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Sacha, in reply to
Like the US folk who settled on “people with disabilities” as their replacement for earlier group terms like “the blind” and “spastics”, it doesn’t go far enough to support fundamental change. There is nothing special about what disabled students need to support their study and involvement in school life.
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Joe Wylie, in reply to
There is nothing special about what disabled students need to support their study and involvement in school life.
It’s a nice statement of intent, and one I’ve encountered many times over the years. Again IMHE it comes down to how it’s implemented. Where I’ve seen it go wrong is when it’s applied in a faith-based fashion, with little attention paid to how well a method works in practice.
A woman I know who works as a teachers aide was assigned to playground monitoring a single ten-year-old. The girl was diagnosed with an intellectual disability. She was big for her age, and had taken to physically intimidating other kids. While she may not have shone academically she was very astute about having an adult shadowing her, no matter how discreet they attempted to be.
For someone who’d raised an intellectually disabled son herself the situation was pointless and demeaning. As her superiors weren’t interested in anything other than the blind application of theory her only recourse was to have herself transferred to what she felt were more productive duties.
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Hilary Stace, in reply to
People First NZ members run a great workshop critiquing the word 'special' , as well as several other words and phrases that other people have used to define them.
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