I’ve had a tough time blogging recently for a few reasons. “Lack of inspiration” is the blanket term, but it’s actually more complicated than that. When social tensions spike, I find myself with so many thoughts– many of which haven’t been vetted by my brain. It may surprise you to know what a complicated filter I actually do have, it’s just not the traditional filter. The point is that I want to speak, but I often find it’s just to say “HUSH UP! QUIT BEING SO STUPID!” But that’s neither helpful nor entertaining.
Moreover, while I actually love to write serious things, they seriously dent my readership. Like a lot. Folks get a little, “what the fuck? Where’s my laugh?” and then I’m all, “I’m sorry! I’m sorry! I’ll be funny next time, I swear!” But they don’t come back. And then I feel like I’ve lost someone because I really just wanted to rant on about racism and republicans and the chronic bullshit that’s inundating me every second. And what’s the fun in that? Nothing, apparently.
I also hate that all I have to talk about is mom stuff. Lame.
But recently I’ve seen so many “mom blog” pieces being passed around. Touching letters about a son with autism or a daughter with a skin condition. A kid who can’t eat anything but cotton candy and dryer sheets, or a little guy who’s different and both parent and child feel alone, sad, and overwhelmed. Like any human, I am touched by the stories of these people with serious hardship, but I also can’t help but feel like the desire to explain our own unique situations only deepens the gap between us. ADD, ADHD, Autism– these are very real and very tough things for parents, but at the end of the day it amounts to unceasing reminders that “my kid is different.” I fight the urge to remind many of my friends that if they didn’t keep reminding me, I’d likely forget and move on. In a good way.
Sometimes I lie on the bed naked and lament about all the parts of me that are depressing. I wiggle and jiggle and point at pockets of horrifying and shameless dimples. It enrages my husband. He recently told me that anything negative that’s ever occurred to him has been because I’ve insisted on pointing it out. To him, I’m a big delicious bowl of naked. It’s not exactly severe spectrum disorder, but there are some parallels. Sometimes we have to go out into the world as we are and just see what happens. Maybe we’ll be surprised.
I have a younger brother with one of the most obvious, obnoxious, and socially crippling syndromes around. You think your kid brother drove you nuts? I can hear a pen clicking six offices over and drive myself to insanity over it, and I was given a little brother who chirped, barked obscenities, and threw up the Nazi salute every second of every day. He blinks, he stutters, he trips, hops, yells, barks, and makes the stranges facial tics– and I stopped noticing about 20 years ago.
When I was in middle school, Oprah or Maury or someone else with a couple of couches and a microphone did a show on “freaks.” Four kids with Tourette’s were paraded on stage with their parents. Their parents then proceeded to speak for the kids, explaining to the audience (and the world) how their children would never be able to do the things every other kid could do: no movie nights, no school dances, no organized sports. They couldn’t take them to the grocery store or the mall. They worried their children would never find love or happiness.
My brother and I were both watching. The creeping sense of dread that came over me was too late. I realized that until that moment, we’d never really treated Charlie like a kid with a disability. (I don’t actually know if he knew it was….) As a family (and not because we had our shit together, or even a long-term plan), we simply held him to the same standard as we held ourselves. (Albeit low.) Tourette’s was never a reason for anything to be a non-starter.
He didn’t quit baseball because of Tourette’s. He quit because he’s a pansy and it was too hot outside.
He didn’t quit playing the bass because of Tourette’s. He still plays. We just told him he had to get a real job.
He didn’t quit archery because of Tourette’s. We just asked he not do it around… anyone.
He didn’t stop going to movies because of Tourette’s. He told people to shut the fuck up.
He didn’t shy away from social interaction because of Tourette’s. He made friends on the basis of his humor and alcoholism.
He didn’t avoid romance because of Tourette’s. He’s just not very good looking. (I kid. I kid.)
He didn’t quit law school because of Tourette’s. He bitched about it, took a few victory laps, and then passed the bar. To the surprise of even himself.
And while my parents did fight a lot of battles on his behalf, ultimately we all knew it was up to Charlie to fight the war. The greatest misfortune of being a kid with a disability is often not the disability; it’s cultivating the emotional and intellectual strength to be yourself and recognize that people are staring, people are judging, people are wondering, and simply not care.
I have stood at the ready many times over the years, waiting for someone to cast a stare I didn’t like or say something to him I could beat them for. But in all my years, I’ve never once had to pick a fight. There either wasn’t a fight to pick or Charlie was quicker to say, “get over it. I have Tourette’s.”
I realize that his battle is not my own. I realize (believe me) that the desire to clear a wide and painless path for your child is fierce, but I also know from my own experiences that we have to encourage them to accept themselves, not qualify themselves. Our children believe they are who we say they are and if we tell them they are disabled and different, they will believe it.
Aut could have Tourette’s. It’s too early to know, but we do watch him for signs. Do I think about how his life would be different? Of course. But I think more about how to cultivate in him a sense of pride and acceptance in himself no matter what he does or doesn’t have. After all, even if he doesn’t have Tourette’s, he’s got the Beaulieu legs and the Minton hairline. And those will take confidence to overcome.
And there are exceptions. But I encourage all parents to think long and hard about what you (we) do because we are scared of what other parents or kids will think and what we do because it’s actually best for the child. Bring your autistic kid to the birthday party. Bring your son with cerebral palsy to the pool. Kids will never stop staring, but your kid deserves a swim on a hot day. And they damn sure deserve cake and ice cream.