Monday, April 15, 2013

Autism Understanding & Acceptance 2013, Day 15: Work to Do

Some relief did come in the days after getting the diagnosis. Yes, it changed our expectations of what life was going to look like, and that came with grief and shock. At the same time, knowing what we were facing was better than the unknown. I was freed from the stress of trying to make this go away if only (if only if I spent more time with him, if I were doing the right things, etc. etc. etc.). It was true. I couldn’t make him not be autistic. So I dove in. I had research to do, or in my minister’s words, “work to do”.

Side note: as if I COULD have spent more time with him! I was a stay at home mom, for crying out loud! I was doing nothing but meeting his needs! But the things we moms say to ourselves…wow…our own worst critic at times.

Ready for acronym fun? I spent many hours at the CeDIR (Center for Disability Information and Referral) housed at the IIDC (Indiana Institute on Disability and Community) right there in Bloomington; an entire library of books, videos & DVDs on disabilities. I stood (and sat, at times) in the aisles of autism stacks, paging through books and browsing videos, taking in whatever I could and taking home bags full of information. I returned month after month, taking in more & more. I centered in on a therapy called Floortime. It was a relationship-based therapy that made a lot of sense to me. And…the closest trained professionals were in Chicago. I’d have to go there with Thomas for months at a time. Or pay them to come to us. Roadblock.

Many other newer therapies I came across all seemed to be making the case why it was better than ABA (Applied Behavior Analysis). In fact, SO many were comparing themselves to ABA that it got me wondering what was behind this ABA therapy. It seemed like ABA was the therapy by which these other therapies were being measured. ABA also seemed to be the only one that had any hard data proving its efficacy. I learned that there was a kind-of sub-category of ABA called Verbal Behavior.

Hmm. Verbal Behavior. Our son really didn’t have any “verbal behavior”. What was behind this?

Somehow, I was introduced to another mom of a son with autism who had an entire home ABA program set up for him. He didn’t go to school – she was doing this all from her home. Little did I know what an important introduction she was to me, and what ABA & Verbal Behavior was going do for Thomas.

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