Saturday, May 04, 2013

Twelve Years of Change on the Autism Spectrum.

GameTeen was diagnosed with Asperger's Syndrome in Kindergarten, back in late 2001/early 2002.

Back then, there wasn't a lot of online information. I researched what I could, found the amazing Barb Kirby's Asperger Syndrome website and became a member of her OASIS forums (Online Asperger Syndrome Information and Support), then hosted on Delphi. It was a dark time for us-we didn't know what the future would hold, were worried that he'd never improve, and the unknown was really scary.

There were people on that forum back then that helped me more than they will ever know, just by offering a comforting word or a little bit of encouragement, or a suggestion of where to take GameTeen. See, he was diagnosed by his school psychologist. Dr. T ran the full gamut of tests (most schools won't) at the insistence of a pretty amazing principal, so many of them, that the first doctor he saw was able to review them and jump in on a treatment plan. Dr. C told us most patients come to her with nothing but the parents saying there is something going on here, but we don't know exactly what that is. At least we had a name and a rough idea of what was up with GameTeen.

Back then, I'd spend a lot of time on that OASIS forum, reading almost every time I got online. I bought recommended books, went to recommended websites, armed myself with the information that I never would have had if not for Barb and all those forum members. Many of my employees were teachers who worked with me part time, and from them, I got a lot of insight into the IEP process. Apparently, wanted to go in fully prepared, heck, going to the IEP meeting at all was not as important to other parents with special needs kids.

That blew me away, how could someone not care about their child's educational journey? In time, GameTeen was moved to an amazing school setting that I wish we'd stuck with longer. He left second grade solidly in fourth grade curriculum, in a class of 10 boys, two paras, a teacher, and at the ready were two social workers and two administrators. Little did we know, Florida wasn't going to be as good for a long time. Again, this was almost ten years ago-the resources online weren't the best.

Meanwhile, in the subsequent ten years, I've made a bunch of online friends with kids on the spectrum. Our kids range from an adorable young lady who is non-verbal (though she signs to Dad 'Go Away!' quite vehemently when she doesn't want to go to school, to kids who are minimally disrupted by their AS-but we want the best for our kids. Now, though, all it takes is a note on Facebook tagged to the others and we've got our own mini version of OASIS. As I said to Ed tonight, years ago, I promised myself that whatever I learned, I was going to share it so that another parent didn't walk through the minefield blindfolded.

Now, I will get messages from others "my friend's nephew was just diagnosed, would you talk to his mom?" and I know that my friends get the same. Say what you will about social networking, today, I got to see one of the beautiful things about it: someone wanted help with the IEP process and a bunch of us rallied around with information and support. Back in 2002, if you didn't know about OASIS and had a kid with Asperger Syndrome, you were on your own. Now, you've got a personal support group right there on Facebook.

It makes me happy that we're making progress in diagnosis and treatment for our kids. More importantly, though, is helping the parents, so they don't get burned out. Today, I realized that we've come a long way.

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