On the Spectrum?

It started with this commercial:

And in the end, when the actor said, “My son has autism.”, John hung his head and slumped his shoulders as he said, “Mine does too.” And with that, the reality of what we are about to face has come through.

I’ve gone through stages. I was curious and inquisitive. I was interested in learning more. I was relieved when the psychologist mentioned what I thought to be true but didn’t know for sure. Of course the concrete diagnosis is yet to be made, pending testing with a group that has months-long waiting lists, And now I am to the point where I want to say, okay, I know. But what are we going to do about it? How can we help this child? How can we cure him? And then my own reality sets in. There is no cure. This is him. His life, the way he thinks, the way he is. And so I realized that this is something that we might as well invite into our lives, cozy up to, and get used to. Because it isn’t going anywhere.

Except that I am me, and I have a problem with a lot of it. Want to know what it is? Go to Google and search for Autism Awareness. Go ahead, do it. See what you come up with. Honestly, I was looking for a photo to include in this post. I like to do that, since plain text looks boring on the blog. So I did the search. Let me show you examples of what came up:

Shoes, bags, t-shirts, jewelry. Even a fucking Koozie for a soda bottle. I’m serious. And I would be okay with this. I really would, if the proceeds of the sales of any of these items went to any sort of organization that is doing something positive for autism. But none of them do. I visited the links. So what does that leave us with? Autism as a fashion accessory? Really? Does  my role as the mother of a child who (most likely, since the concrete diagnosis is at the hands of a team with a months-long waiting list) has this disorder mean that this have to infiltrate every facet of my life to where it is even emblazoned on my shoes, my purse, my God-awful tacky earrings?

I refuse to let this become who we are.

Evan is the little boy who can bild intricate structures out of Legos in the blink of an eye. He is a fourth-grader, a 10-year-old, a grandson. He is the little boy who makes us laugh, can be a bit spirited, loves his baby brother fiercely. He is the kid whose heart breaks when he sees a homeless person on the street, a lover of aviation, a scholar when it comes to the history of the Titanic. He is all of these things and so much more.

Oh, and he has Asperger’s Syndrome, which just happens to be on the autism spectrum of disorders. But this is far from all he is.

I will not let this become us. I will work to help Evan. I will do my part to support the cause because the cause was thrust into my life. I will not wear this as a fashion accessory, let it infiltrate every corner of my life. This is not all we are.

It’s not.

I will not let it be.

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2 thoughts on “On the Spectrum?

  1. Why is it that diagnosises of “disorders” austism, Asbergers, ADHD, Dislexia, Anorexia, Bulimia. . .. are used to define the person? Aspergers is just a diagnosis. Like eczema, asthma, diabetes. . .name it. Agreed, it is harder on the family than some of the other situations, but in the end, it’s just one tiny piece of what makes Evan so Evan.

    While I believe autism awareness is important — the earlier it is identified, the more the family can adapt to make sure the kiddo has the resources he needs to succeed. I get that. But society hears “AUTISM” and gives you the pity look. Forget that no one can define exactly what autism is. It’s another label that the teacher can use to excuse herself from doing her job to the utmost. It’s another funding stream for the administration. It’s another. . . .

    Oh sorry — am I ranting a bit?

    Evan is Evan. Wonderful, handsome Evan. Zach’s Big Brother. Andi’s little man. He has Asbergers or whatever they officially call it just like he has big gorgeous eyes. It’s just a piece making him who he is.

    You keep fighting for your boy!!!!!!!!!!!!!!!!!! (((HUGS)))

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