Saturday, February 19, 2011

Autism Awareness

(From April 2010)

It's April 2nd, World Autism Awareness Day.

As (most) of you know our son was diagnosed with Autism in 2006, he qualified for the diagnosis in numerous evaluations over the next couple years.

We poured all we had, and a lot of what we didn't, into getting him what he needed. It worked. Today we have a son that still qualifies for the diagnosis based on testing, however, if you know Gavin, you'd be hard pressed to find any Autistic like qualities when spending an average amount of time with him. He might seem rather "typical". His teachers know different, we know different- but to most, he's just "like all the rest". Which was EXACTLY our plan.

"If a child cannot learn in the way we teach ... we must teach in a way the child can learn." -Dr. O. Ivar Lovaas

This was something we adopted, in a major way. We "forgot" all the "norms" and went against the grain to teach him. It was hard, people tried to tell us we were doing it all wrong, backwards maybe. We couldn't heed the advice from others as they didn't have a son that couldn't communicate, didn't make eye contact or stop banging his head long enough to take a breath. They didn't have a child that screamed, non stop, for years. We sought out those who DID have a child like ours and found few and far between that actually had any hope. I found myself slipping in to a deep depression the more inner twined I became with these families. This isn't how it was supposed to feel. Suddenly I knew a little bit how Gavin might feel. Confused, alone and left wondering if this is how it felt.

I stood back and realized a few things. Our friends and family couldn't really understand- supportive and loving yes, but able to grasp our reality? No. Then, the families with children like ours, well *I* didn't understand THEM. We didn't understand Gavin. Gavin didn't understand us. So, as you might realize and I did at that moment, it's a breakdown of communication.

What do YOU do when you can't communicate with someone? You might learn their language. You might implement the power of touch. You might use a form of body language. You might just smile and keep saying in YOUR native language- I love you, hoping that might mean something one day. You might even hope that you'll hear it back, even if those pesky experts say you may never.

We learned Gavin's language. We didn't learn the language of Autism. I still am not familiar with that dialect. I didn't attempt to flood the information gates with all the different ways children with Autism learn, we employed therapists who worked 1:1 with him, I broke it down to how GAVIN learned- we honed in and dug and dug and dug. We dug until we found what we were looking for. We still have to get the shovels out occasionally to find a way with him, but the beauty behind that is we're getting to the point where he helps us dig. We have a child who's empowered not by his abilities, but his DIFFERENT abilities. He's strong. In his hand is a tool that he's learning to use. I don't think there is a better gift you can give your child then the ability to see himself, not as the VICTIM, but as the VICTOR.

Today we try to remember what it was like, but we can't. We just know that we have a little boy who showed us the beauty of life, locomotives (ask how many trains we sat and stared at and how many trips to Union Station we took) and most importantly a little boy who showed us how many different ways you could love without saying a word. We're fortunate to have a little boy who can tell us he loves us, but can't forget the families who are still learning the language of their Autistic child.

So, today we proudly "celebrate" World Autism Awareness Day.

Three things in human life are important. The first is to be kind. The second is to be kind. And the third is to be kind.-- Henry James

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