These Words and My Boy
Posted on April 20, 2015
April second was International Autism Awareness Day, and to celebrate, I called into my friend Kate’s radio show here in Geelong to have a quick talk about what Autism is about. I was insanely nervous on air, even though it is exactly like having a phone conversation, except with an unseen audience (a bit like blogging, really). The following day, the written version of my piece The Words was republished on the disability website The Mighty. The special thing about that was that it was still International Autism Awareness Day in the US, where The Mighty is based.
My family and I come from outside of the disability community. There was a time, not so long ago, when I was afraid of words like autism, and disability. Boodi would have been diagnosed and started therapies much earlier if I hadn’t been so scared and saddened by the word “disability”. I ran away with my child when our Maternal Child Health Nurse suggested referring him to the NDIS after I brought my list of developmental concerns -specifically quite sure that he wasn’t autistic- to her. I cried and denied that my beautiful, perfect boy was disabled.
Now I go further than accepting the words, I embrace them.
My child is autistic.
My son is disabled.
My boy is beautiful.
My baby is perfect.
None of these things are mutually exclusive. I embrace the words, and the community, and the company that he is in . I am not fond of the term “tribe”, but this is Boodi’s village, and I have opened the doors to understanding, awareness and advocacy. We have joined support groups and forums. We attended the Geelong Autism Walk on April 12, wearing our rainbow wristbands. It was a happy gathering.
We filled the sky with coloured balloons at the end of Eastern Beach, to celebrate the colours of the spectrum. The whole of April is Autism Awareness Month, and the autism community would like people to think about more than awareness, and to ponder acceptance and equality instead.
What do you think about when you see the words?
* If you read my post Essence last week, please note that there was an edit due to a factual inaccuracy about my brother’s initial meeting with our mother. you can see it here.
Linking up with #IBOT over at Essentially Jess today.