A year of awareness

And so apparently it's Autism Awareness Day and everyone and their autistic uncle is writing a post to spread awareness.

This is our first awareness month as last April we just began to realize Sophie is probably autistic. Kind of ironic really, I guess we were really made aware huh.

I am not a preaching, spreading the word renegade or advocate you might have noticed. Yes, autism is the biggest thing in our life now but I understand if it isn't in yours. Maybe debt is. Maybe infidelity. Maybe cancer. Or maybe your kid is flunking math, smoking dope and a general pain in the behind. I understand. We all have lives, who am I to try to sway you to my cause.

The word awareness is an odd one for me. For me being aware means knowing something exists. Do some people still not know autism exists? What rock have they been living under? 1 in 50 now and all that...

But I can be a good sport. I've never been a joiner but I'll hop on this boat. I don't want to bump into the boat that's arguing semantics though, the "should-it-be-awareness-or-acceptance-or-action" boat. It looks like a rough crowd there, I don't want to get caught in the middle.

So if I were to talk to someone who doesn't know a lot about autism about Sophie, what would I say?


This is Soapster. She isn't a poster child or a cause or an "issue". She is a little girl whom we are crazy about. She is happy and go lucky and if she likes you, you will know it. She does most things differently from other kids, like she doesn't play and likes to run in repetitive patterns. But she does some things the same too, like loves getting kisses, and being tossed in the air and going down the slide. She loves fruit and Thomas most of all. There is a lot we don't know about her yet. We wonder if she will ever talk, how much she can learn and what her future holds. We think she is a clever little girl who knows more than she lets on. We hope we can unlock her potential. But most of all we want her to be happy, surrounded by people who think she is as wonderful as we do.

And what would I want people to know about being an autism parent?

At the beginning it feels as if the rug has been pulled from underneath you. Everything you knew or expected of parenthood is turned on its head. You doubt your every decision and feel as if you don't know your child at all. There are some people that feel obligated to tell you what you are doing wrong and what you should be doing instead. You read books and blogs that make you feel inadequate and like you're not doing enough. But with luck, you find your groove. You figure out what works with your values and what doesn't. You get braver refusing options or "helpful advice" from strangers. You settle in for the long haul. You want the same for your autistic child as you do for your other kids- acceptance, friendship, opportunities for fun. You desperately want them to be included, invited. Every slight (real of perceived) results in your heart breaking just a little. You wonder if, and hope that in the future your child will have a place in this world, a place where they will be not only accepted but integrated. Where their strengths will be acknowledged and utilized. Where they will be productive and satisfied. Different but not less.

And that is my square for the Autism Awareness quilt.



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