6.24.2011

Three Totally Different Autism & Advocacy Posts

I was on a slightly guilt-tinged vacation this week. Couldn't you tell? (You could if you were expecting any kind of correspondence from me.) Seymour and the girls and I had a lovely time boating with Seymour's folks in the San Juan Islands while Leelo had the time of his life at camp (I'm picking our boy up this morning, the rest of our family remains afloat). Here are the three posts I sent hurtling out onto the internet from the boat:

On BlogHer: Why We're All on the Autism Spectrum (or What I Learned About Myself at IMFAR). Excerpt:
Being an autism parent has always been a convenient way to laugh off my social ineptitude. But what if I'm more than just quirky? I came home from IMFAR determined to explore the matter. The first thing I did was take the AQ (Autism Quotient) test. I was careful not to exaggerate my responses, taking the milder options when unsure. I still scored 32, above the test's threshold. What does this mean?
Some folks have complained that it's dismissive to claim we're all on the autism spectrum. Since I'm grumpy about no longer being on the high seas sans responsibilities or drinking 25 year old vintage port, I've been rather irritated by those comments -- and since I'm a rotten commenter I'm just going to repost my response here:
I think some folks are having trouble reading past the headline to the conclusion: the more information we all have about ourselves, the better.

And I don't think we're all a little autistic (or all a little bisexual, for that matter). I think those spectrums have poles, and while the paths between the poles aren't necessarily linear, we're all somewhere on them. My hope is that this [post] helps people think more inclusively about our commonalities as well as our differences.
I also posted twice on TPGA (the Thinking Person's Guide to Autism). First on Summer Strategies for Autism Families, whic was an update of my 2009 BlogHer essay When Summer is Extra Special. Excerpt:
The problem with mostly-mommy-most-of-the-time: Leo is used to 1:1 supervision and engagement all day long, and I can't possibly provide the kind of routine and stimulation he craves, no matter how many camps and grandparent visits his sisters get shuffled off to. I try to keep Leo occupied, and I have a lot of support, and having an iPad helps, but I still worry that -- as has happened in summers past -- it won't be enough, and Leo's behavior and abilities will keep disintegrating until school resumes at the end of August.

So, understandably, I'm scared of summer. But I also think it has a lot of potential. It won't all be minefields
I was surprised at how much I needed to revise the essay in just two years, in all-positive ways. Leo's behavior is on a such a more even keel (and I'm two years farther away from Leo's traumatizing -- for him and me -- wrong-medication winter of 2008), our boy has started traveling again, we no longer have to stake out his camp office overnight to get him a 1:1 placement, and damn, he's got that iPad. This summer should be a good one.

The second TPGA post (which just went live today) is a fascinating interview & conversation I had with Syracuse University's Alan Foley, on how he developed his excellent free app iAdvocate (did I mention it's free? Does your kid have an IEP? You need to download this app, now). Excerpt:
Part of the intent [of developing iAdvocate] was to help the parents who confront the [potential educators or administrators responses to parent requests] statements for the first time and completely shut down. We really want to help those parents get their feet in the door!

...

Also, the concept of an advocacy tool has been very interesting -- there are lots of other contexts in which there is an information differential or a power differential in which something like this could be useful, for instance working with immigrant families. I feel like we've developed a nice model.
Yet another example of how iPads and iDevices are so much more than AAC -- and are supporting children and adults with special needs in ways no one had anticipated. When are insurance companies going to start funding the devices already?

Off to pick up Leo from camp. Have a lovely weekend, folks.

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