I enthusiastically raised my hand, volunteering to write a piece for Autism Awareness Month, although I had no idea what it was exactly I wanted to say. My feeds are ripe with stories of acceptance, awareness, inclusion and the like — all a beautiful celebration of our most amazing kids. My heart explodes when I see friends who once never gave special needs a second thought post messages of love and support. But sometimes I’m just. not. feelin. it.
My (soon-to-be) 7-year-old son has Asperger’s. For those not in the know, Asperger’s is generally considered the “high functioning” end of the Autism spectrum, often associated with celebrities and well-known historical figures like Einstein and Mozart. Like any kiddo he has good days and bad days. Sometimes we have a streak of good days. Most often, however, we have streaks of bad days — fits and meltdowns, lack of body awareness, impulsiveness, obsession over details, that far-away look that’s always the tell.
Why today and not yesterday? Or why more tomorrow instead of today? Did he eat this or that? Did he take his vitamin? Did he sleep? Is there a moon phase happening? You can ask yourself questions ’til the cows come home. If I let it, the Autism snowball will run me down and run me over.
It sounds cliched, but my answer to “when did you know” is always the same. I think I always knew. He was always fussy, and never slept well. He didn’t like being cuddled, and attempted babywearing about drove us both mad. He would lose control, bang his head, spin in circles, line up his toys. Little thing after little thing spoke to my intuition. When he neared his second birthday and still wasn’t really babbling or making noise, I had a heart-to-heart with our family physician who referred us to BabyNet. Everyone had an opinion, of course.
“He’ll come round.”
“So-and-so didn’t talk until they were five.”
“Don’t be a worry wart.”
I simply wasn’t having it. What harm could there be in helping him reach his milestones? I’ve never regretted following my heart. After an evaluation, Jackson began Early Intervention and Speech Therapy, and later received Occupational Therapy. We worked hard. I read and did all the things — anything and everything to help him. We’ve had incredible doctors and therapists on our team for almost five years. All of it is a testament to early intervention and what a difference it can make; I am beyond proud of the progress Jackson has made, and continues to make.
But then there are days like today. Days that test you from sun up to sun down. They test him too. I watch him struggle, looking for ways to soothe, ways to make it better. I see him frustrated, tired and so desperately just wanting things to go right. We look at shoes; he pulls away angry he hasn’t mastered tying yet. I watch him drag his hands across the jeans, sad he can’t get the buttons, snaps and zippers quite right. Outside, he pushes his face into the wind, eyes closed, arms open. Here it’s somehow okay. I shift my day around, neglecting chores to let him embrace it.
He is both a celebration of childhood and innocence and adult and experience. He stares wide-eyed at tractors, but can talk about them like the eldest of farmers. He’s learned to enjoy listening to music, but Johnny Cash is his favorite. He won’t eat his vegetables, but will wipe out the all-you-can-eat sushi bar.
Around here, we are Autism aware every day. While our lives are often a precarious balancing act of tolerances, routines, and charts, we choose to be positive. We choose to be the duck, and let the waves of Autism wash off our backs. We choose to eat the frog, and pick our battles wisely. We make the choice each day to not let Autism define … well … anything, simply taking it as it comes and making the best decisions we can make.
Today I choose to not wear blue or puzzle pieces. Today I choose to skip the blue light bulbs on my porch. Today I choose to sneak in one tight squeeze and quick kiss while roasting hot dogs and marshmallows outside in pjs. Today, like every day, I choose my son exactly as he is.