My six year old nephew called me last summer. He had been looking through photos of his brother and cousin up at the mountain, noticed he wasn’t in the pictures and had something to say about that.
“Auntie A! Meeeeeeeee skiiiiiiii!!!”
I was cautiously optimistic to hear his request. We’d had him up on skis when he was 4 but he was more interested in eating snow than staying upright. When he was 5, we repeated our trip but when given the option, he chose a sled over skis. Maybe this would be the magical year!
We’ve been practicing over the past few winters on plastic, slip-on skis to help him get use to the idea of staying upright with his feet strapped onto long boards. At times our quest felt futile. Without real edges or any surface for traction, the plastic skis slipped out from underneath him on the snow. His usually patient and easy going demeanor would give in to frustration. We’d put the skis away until the next time and repeat.
My nephew has Down Syndrome and that extra chromosome doesn’t do him any favors when it comes to learning a new sport. Muscle flaccidity, decreased motor skill, difficulty with coordination, challenges with verbal skills; it all comes with Trisomy 21. One specialist likened it to trying to function with your body in a sock. Simple things are difficult, like moving the tongue, holding a crayon, picking up a toothpick, using words, turning verbal instructions into actions.
We do all of those things anyway. We focus on our cans, not our can’ts. We use patience and repetition. We laugh a lot. We celebrate advances. We don’t get hung up on imperfection. We move forward, we move backwards, we try again, we don’t give up. This applies to every child, regardless of chromosome count. Some things are hard. We do them anyway.
He’s just six years old, he has an extra chromosome and New Year’s Eve, he made it up the chairlift and down his first run on skis, using his own strength and coordination to control his speed and stop.
And THAT is how we take the dis out of disability!
The Girl In Muddy Boots 