By Kim Stagliano
Deep sigh. Ever have a day where you just plain feel tired? It's not just physical fatigue, it's a bone deep exhaustion that sneaks up on me. And my husband. And fellow autism parents. Yesterday was one of those days. Here's why.
My girls are now in middle school and high school. Our elementary days are behind us, for which I am grateful. No more red dye soaked school parties for starters. And the girls are on the same bus schedule, a small but important bit of continuity for my day. By 7:20am I am seated quietly at my desk working with my twelfth cup of coffee in hand. It's good.
Back to yesterday. Each year, a top rated prep school in our area hosts a wonderful basketball tournament for Special Olympics. Local middle and high schools field teams from the adaptive PE classes. A sports writer celeb is the MC and the entire prep school seems to turn out with smiles and manners and exuberance to volunteer and to cheer on the players. Many of the players march into the gym like gladiators, albeit really happy warriors, faces beaming at the attention, eating up the cheers and whoops like a big bowl of ice cream. They high five and thumbs up and you can't help but grin from ear to ear as you watch them. It's the true meaning of Special Olympics sports. By all typical measurements, the event is a success. Except....
If you landed on earth in 2013 from a planet that had never heard of autism, you would have been able to point your long, green finger at a group of players who stood differently, who participated differently, if at all. Their faces were beautiful. Their bodies lithe and intact - no wheelchairs, no signs of disability even from the top of the bleachers. But you'd know. These are the players with autism. And the event simply isn't designed to accommodate their special-squared needs.
The teams waited for 30 minutes in the stairwell before entering the gym for the dramatic and emotional entrance ceremony. For some of the kids with autism, this induced tremendous stress. And behaviors. All I could think of was Temple Grandin talking about cattle chutes.
The National Anthem was so loud Roseann Barr would have clapped her hands over her ears. More stress.
The games each used the buzzers on the countdown clocks. A jarring noise at the best of times. One darling girl (whom I happen to love) spent the entire game staring at the clock.... waiting.
There weren't enough staff members to assist the children - one on one para at school means one on one para elsewhere right? Especially a jam packed gym loaded with strangers and loud noises. Nope.
We parents have mentioned these autism triggers every year to the powers that be. Every year the triggers are back in full force. This year the ear splitting National Anthem was a new touch.
I spoke with friends who are also autism parents who lamented, "No matter where we go, even sporting events for special needs, he sits on the sidelines because no one knows how to work with him. It's not right!"
We are soon to entering the Silly Season of the Blue Light: Acceptance! Awareness! But what have we accomplished when even a Special Olympics event is a slog for autism families - despite best intentions and whole lot of hard work?