(You can listen to this column, read by the author, here.)
Last Thursday was World Down Syndrome Day. You know, one of those well-intended “awareness” days where we’re supposed to learn about some sad cause or affliction. I usually roll my eyes at these kinds of days because there’s a million of them and I have important shows to binge on Netflix.
But my son, Chance, has Down syndrome, allowing me to be one of those annoying people to force what impacts me into your face. Yes!
When I found out I was going to have a kid with Down syndrome, well, let’s just say I didn’t handle it well.
But life, despite what modern schooling tries to teach, doesn’t give a damn about your feelings. And neither did Chance when he was born.
He quickly became the frat brother I never had, happy, silly, gregarious, reckless, the reincarnation of John Belushi, all Three Stooges in one.
He is the walking definition of the phrase “and this is why we can’t have nice things.” Not that he sets out to break things, he’s just having so much fun being himself, things around him just seem to fall apart, including my back, not to mention my checkbook. (Younger readers can Google what a checkbook is.)
You know that stupid inspirational poster, “Dance like no one is watching”? He will jump in front of you to make sure you’re watching. That’s his fuel – forcing you into his goofiness.
Chance is the Buddha. I’ve never known anyone who can live in the moment the way he does. Whatever it is he’s doing, he’s loving it completely, otherwise he’d just stop doing it. Just like you right?
He has many health issues. Open heart surgery at about three weeks saved his life. Beyond sizable development delays, life-long health issues are the cost of being in the three-chromosome club.
When we go to Children’s Hospital, where we are frequent fliers, I’ll pretend to be very frightened and try to run out of the doctor’s office saying, “It’s too scary here, I’m out!” He’ll then grab me and say “no, Jon! Be brave like me!”
Yes. He calls me Jon, just started one day. For about five years straight he called me “father,” which was the coolest thing ever. There were about eight months there he named me “Janelle.” Every time I walked by him, he would say “Hi Janelle,” and laugh his head off.
My biggest frustration as a caretaker is dealing with the bureaucracies like Medicaid, the state and the school district.
Well, there is an exception. You know saying something nice about the city of Boulder is like a root canal for me. But Boulder’s park and rec department runs a program called Expand. It’s been as important to Chance’s life as Children’s Hospital which keeps him alive.
It’s where he socializes with his peers, both developmentally disabled and typical, through their activities like camps, sports, game nights, parties, and opportunities just to hang out and socialize.
Chance learns more from those peers than he has ever learned from a school district or a Medicaid program.
Now that he is entering adulthood my worries are how he will fill his days. There is a tendency for people like Chance just to be warehoused and call it compassion — not be part of productive society.
All my son wants to do is work. He’s in a program to get him some work training. You can see the pride beaming from his eyes when he comes back from a job site.
Close to 90% of all adults with Down syndrome don’t have a job. What a shame for all those workplaces that don’t have someone like Chance.
Watching a person with Downs overcome so much just to try to be helpful, well, it puts everyone’s problems into perspective. The workplace changes.
During COVID I learned with disappointment and great heartache how many Americans were happy to forego work to be on the dole. People became addicted to unemployment and handouts.
By contrast Chance shows what I believe is the natural state of man — a longing to produce, to build, to create, to belong.
How heart wrenching to watch so many people who are able to work but refuse to do so while so many like Chance want nothing more than a job, never to be offered one.
All we are saying is give Chance a chance.
Jon Caldara is president of the Independence Institute, a free market think tank in Denver.
