But I Would Change The World For You


I woke up on November 1, 2015 to the sure knowledge that my son was autistic. We’d wondered for years—friends and family had gently prodded us to seek an evaluation—but I lived in denial until Declan nearly threw himself down a flight of stairs on Halloween. He was visibly overwhelmed by the lights and noises and costumes—by my insistence that he just fit in with the rest of the world—and when he tossed his small body toward twelve unforgiving concrete steps, I barely stopped him. I caught him up in my arms and felt him quivering there against my chest—thrumming like the wings of a hummingbird.

He cried until I took him back to the car, and then I cried until we got home.

I felt a lot of things. Fear. Anxiety. Sadness. Hope. Determination. Love. Love, love, love.

And I felt helpless. Helpless is still the thing I carry around with me, most days.

I did everything you’re supposed to do for a child on the spectrum. Speech therapy, occupational therapy, ABA, when we finally got off the waiting list. We didn’t leave the house without noise canceling headphones. I made my own visual schedule to ease Declan’s anxiety with transitions. Those things helped. They helped Declan find good ways to be angry, to feel less overwhelmed by changes and transition and the general noisiness that is the world. They helped him take the things inside his head and put them into a language the rest of us could understand.

But none of it stopped a stranger at a restaurant from calling him a retard. It didn’t stop two elementary school kids from calling Declan’s name just to mock him when he couldn’t hear it.

Helpless. That is why I feel helpless. Not because Declan needs fixing, but because the rest of the world does. I can help Declan. He’s one unique, wonderful little boy with a neurological disorder I wouldn’t cure if I could. But the world—it’s big, and it’s filled with stigmas and misconceptions and, to be frank, sometimes just outright meanness that I feel powerless to fix.

My favorite mug says the following, and it makes me feel a little less helpless:

"I wouldn't change you for the world, but I would change the world for you."

 I’m outnumbered and I’m outgunned. A few published articles—a blog series once a year—it’s not much. It’s not going to fix the world before my boy has to come to grips with it. But maybe it will help.

That, in short, is why I insist on telling our story—because it is important, because I want to affect change, and because it’s the kind of beautiful that should be accepted. That said, I try to be careful about telling Declan’s story; it’s his, after all, and I want to honor that. Like any story, it’s not always easy—it’s downright exhausting, at times, a reality I’m slow to disclose to the collective internet because I don’t want to arm anyone with yet another reason to judge my son. It is for that reason that last year’s series mostly included the unnoted beauty of autism. This year’s will be a little different. I’m going to (thoughtfully, responsibly) share some of the harder moments. Those moments are part of our reality—a part of our reality we have accepted, and one we wish others would make room for, too.

Because of our family’s stance of autism acceptance, each post will circle back to that. One of my last posts will address questions we get frequently (and some that have been posed recently), so feel free to add any you might have along the way.

I’m looking forward to this series and hope you are, too, but if you only have time to read one thing for Autism Awareness Month, consider checking out blogs by Autistic people. This is a good place to start: