Tuesday, August 30, 2016

The Best Show You'll Never Get to See

Me calmly pinning my child to the
playground floor to try to end
a meltdown. As you do.
Lately, my favorite people to spend time with are parents of kids with special needs. They're empathetic, they're patient but have no time for BS, they tell you what they think, they have their priorities sorted out.

And they're freaking hilarious.

Nobody tells better stories than the mother of an atypical child. And nobody is better at finding humor in seriously dark material.

For example, my friend Missy* tells the tale of a time her then-seven-year-old her daughter, Little Miss, had to be hooked up to an IV. Little Miss has huge sensory integration problems and a hair-trigger startle reflex when confronted by sounds she can't handle. All of this is written up in her medical paperwork.

So, one day she had to have an IV. Like any child would be, she was anxious, so the medical professionals in the room were trying to be gentle and encouraging as they stabbed her in the arm. When the needle had been inserted, one of them cheered "Woo-hoo!," whereupon Little Miss immediately punched the nearest nurse.

"What was that?!?" cried the nurse.

"You woo-hooed." stated Missy calmly. "You can't woo-hoo."

A bunch of us agreed we would love to watch a sit-com based on our lives, but nobody would ever allow such a show to be made. I can only imagine the uproar: You're making fun of handicapped children! You're terrible people! Where are some pearls I can clutch?!

Obviously disabled people should be treated with the same dignity as "typical" people. But the caregivers' lived experiences matter, too. So often we are kept segregated from the general population - if our children can not participate in the activities enjoyed by typical families, we're off on our own. Even if our children spend part of the school day in an integrated setting, their names often won't be printed on the class list, so they're unlikely to ever be invited to typical kids' birthday parties or play dates. Children with disabilities tend to be relegated to society's shadows, and we, their parents, are largely hidden from the public view, unless we're fighting for something for our kids.

Caregiving is important. Our lives are real, our experiences matter, and our stories can be dramatic, touching, funny, even scandalous. But at this point we're just swapping these stories amongst ourselves, because we doubt anyone else could handle them.

* no real names from here on down