When They Stare: a Special Needs Mom Shares Her Perspective
People would always stare at my kids. I have three boys, two with a form of hemophilia, one with autism. Back in the day, they used to make kids with hemophilia wear these dumbass medical helmets. The helmets just sorta screamed, “HEY LOOK, SOMETHING IS WRONG WITH MY KID!” Add that to a screaming, melting down kid with autism who just looks like a brat, because he wasn’t old enough to be all flappy and pacey and weird like he is now (and autism awareness wasn’t as big back then,) and parents with lots of ink and dreads and stuff, and it’s “OH MY GOD WHO LET THEM BREED CONTACT THE AUTHORITIES!”
My late husband was a very different personality type than I was, and am. He would patiently explain to people about autism, and how one bump to the head of a child with hemophilia could be disaster. He would talk about how blessed we were to have kids, how great our little circus was, and he would cheerfully win them over until I imagined they would go home and donate to their local chapter of Cure Autism Now and get tattoos of puzzle pieces on their ankles. Me, not so much.
I would hear chatter in the coffee shop from across the room. “Murmur murmur HELMETS.” I’d turn around and say in a super loud voice. “DO YOU HAVE A QUESTION ABOUT MY KIDS’ HELMETS?” The place would go silent. I would turn around, get my Americano, and push my double stroller out the door.
This was in Chicago. When I would visit my mother in her fancy neighborhood in Virginia, people just wouldn’t look at us. Ever. We didn’t exist. That was worse. When I got home, I talked to a friend who had an older son who was non verbal, who grunted and howled. I asked her how she dealt with the staring and reactions. She looked me in the eye and said, “Guess what? It’s his world, too.”
Nowadays my son with autism is closing in on seven feet. He yells around about haircuts and flaps his arms and acts like a nut everywhere we go. And people stare. But they smile, they laugh, he brings joy to every single space he enters. This is his world. He makes it better. I have not forgotten the pain of people staring, and not staring. But it heals my heart a little to see him bringing happiness everywhere he goes. Welcome to his world.