Thankfulness For Caretakers

Pause the Political For the Week

When I write about disability issues, I often focus on political problems. Politics is my gig, after all, so it’s normal for me to talk about the big structural problems in schools and government that prevent help from reaching people with disabilities. I usually focus on our personal struggles, because I hope by putting real faces on a disability story, I might convince others to care and bring about real change.

But sometimes, it’s important to step back from political advocacy and just talk parent to parent or parent to child, and recognize that despite all that is wrong with the system, the disabled people in our lives are very much loved and have enriched our lives beyond belief.

It’s Thanksgiving, so let’s count all the ways that we’re thankful.

My son’s autism, with its OCD tics and inability to maintain conversations is certainly frustrating, but has also come with unusual gifts that never cease to amaze me. He taught himself to read at three. He looked at the multiplication tables at seven and instantly knew them. He taught himself to read music, modify computer codes, remaster old music, rebuild old computers, and edit wikipedia pages. The human brain is an amazing instrument, and it’s been the gift of a lifetime to have front row seats watching an original one at work.

While we might be outside the mainstream parenting world, we’re not isolated hermits. It’s just taken a little creativity to find our places in society. A big brother might need to take his brother to the Prom. I might have to hack a community college system to make it work for us. While I’m not hanging out with the “football moms” at their latest fundraiser, our weekends are filled with family and friends — all wonderful, creative, quirky folks who make us laugh. We made our own community.

And we’re painting our own adventure. Because Ian doesn't have the normal things that keep a 20-year busy — college life in a dorm, fraternity parties, a girlfriend — we go places with him almost every weekend. It’s become a game to find something new each time.

This weekend, we’re planning a trip to Queens to get some Greek food in Astoria and to check out Sunnyside, where I had my first apartment after college and where Peter Parker lived in the last Spiderman movie. I want to check out this restaurant in Brooklyn another day, and combine it with a visit to the Brooklyn Museum. On Sunday, maybe we’ll continue the New York City Borough theme and do something in the Bronx.

Because we’re not held down by expectations and demands of the typical world, we make up our own rules and pretty much do what we like. Sure, we do everything with a nearly six-foot tall autistic guy in tow, but he’s always up for an adventure and isn’t whining about missing out on some fun he could be having with friends or a girlfriend.

We’ve made things work for us — we have a good life, and our kid is amazing. All that is true, and at the same time, I want a better world. So, next week I’m going to keep advocating for better schools, more support, and broader acceptance. Just know that behind the scenes, there is so much love.

Happy Thanksgiving and love to all!