April is….

Autism Awareness Month: Day 1

 

Dear Reader,

You may have noticed that I write about life with my daughter, whose blog name is Bink, on a regular basis. There are poems, and stories, and sometimes pictures of her scribbles, and an occasional photo of her from the back, or from a distance.

I am respectful of her privacy, because she doesn’t grasp what it means to be known in the ways many of us have come to allow. Maybe that will change someday. Maybe she’ll want to be seen, and heard, by more people than those in her immediate physical sphere. She is a pretty cool human. Her creativity extends to occasional stories, quirky artwork, and even poems. She also sings beautifully, yet will not tolerate a chorus group. She tried that when she was younger. It was a perfect storm of sensory overload. Too much noise, too many instructions, waiting…all things that create extreme discomfort for her, which leads to anxiety, which brings more discomfort.

If she ever has the capacity to understand the possibilities of visual and auditory media, and if she chooses to share herself that way, I’ll help her navigate that safely. She’d delight so many people! For now, though, I’ll keep shielding her in the ways I can. I’ll also keep writing about her.

“I want to tell people about you,” I say to her,” because you are soooo interesting. I want people to know you, because you are wonderful and creative and unique in all the world.”

“ Yes,” she’ll respond matter of factly.

Here’s what I don’t say: The world is not kind to people with challenges like yours. People fear what they don’t understand, and when people are afraid, they can be cruel and sometimes dangerous. More people need to know about this thing called autism, so they will be more accepting and protective and so they’ll help create more opportunities for you and your peers to live healthy, happy lives. I worry about what will happen to you after Super Guy and I pass away. Your vulnerability scares me. I don’t know how to guarantee your safety for all of your days.

Truth is, I’ll never say those things to her. It wouldn’t be fair for me to expect her to understand. It wouldn’t be helpful.

I have great expectations of you, dear reader. I think you can understand. I think you can be a helpful part of the change that needs to happen. I think we can co-create a more inclusive, compassionate society where respect for all people will be the norm. I also think you deserve a chance to know my daughter, even if it’s just through my words. So, I’ll keep writing what’s in me to write, and perhaps you’ll keep reading my words and those of others, and maybe someday we won’t need an Autism Awareness Month.

 

–Melinda Coppola

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