My Son With Down Syndrome Does Not Want Special Treatment
The stakes couldn’t have been clearer.
“10 darts $10. A prize for every pop.”
I stepped up to the carnival booth with my two boys and purchased 10 darts to split between them. First up was 6-year-old Maxon. A bundle of confidence, he’d punctured a few balloons in his short lifetime and had the giant plush mustachioed banana at home to prove it. He carefully lined up his first shot and threw, sinking the dart tip into a red balloon with a satisfying pop! In his excitement, he threw the second dart too high, losing it to the wood above the balloons. The next two made the mark in quick “Pop! Pop!” succession. His fifth and final shot was a heartbreaking bouncer off the blue balloon dead ahead, the kind of dud that’s due more to a blunt tip than a bad throw.
“Can I get another try?” Max asked hopefully.
“Sorry my man, no can do,” said the grizzled attendant behind the counter, “But you got three! So take your pick.” He held out a bucket of sad little gingerbread men, identical in their uneven stuffing, crookedly sewn features and coating of carnival dust. Max found a favorite nevertheless. When you’re 6, a prize is a prize. “Now it’s your brother’s turn.”
When the attendant turned to my 4-year-old, Cooper, his entire demeanor softened. “Why don’t you let him hop up here, ma’am,” he said, gesturing for me to hoist my son onto the counter. Cooper clapped in excitement when I set him there, then reached his little hand out for the darts.The first and second throws fell a good two feet short of the balloons. On the third, he sent the dart into a spin, smacking the back side into the latex surface, sans popping power. He threw the fourth dart hard but straight down, so it bounced off the wooden border below the balloons. The fifth flew true, kissing the underbelly of a yellow balloon oh so softly before sinking to the ground.
Just as I was about to lift a disappointed Cooper down, the attendant placed another three darts on the counter. “Here, little guy. Let’s give you another shot.”
Cooper took the extra three shots. And the three he was offered after that. Next to me, Max muttered, “Why does Coop get so many extra?”
Finally, the well-meaning attendant picked a balloon off the board and brought it closer to us, holding it directly under Cooper’s hand, which clutched the last of his extra chances.
“Here you go, buddy. Take your shot.”
Cooper took one look at the proffered balloon then sailed his final dart over the attendant’s head toward the board. Hitting nothing but air, it dropped to the floor with a thud. The attendant scampered over, picked up the dart and popped the balloon he was still holding in his hand. “Yay, you did it, buddy!” he said with a big smile.
Cooper looked at him and burst into furious tears.
The hidden cost of kindness
When I found out Cooper would be born with Down syndrome, I feared the world would be unkind to him. I imagined myself returning the cruel glances of strangers with my own visual venom. Rising to his defense against name callers. Hell, I was even prepared to do battle with a kid or two if it came to that. What I was not prepared for was that some people are so damn nice.
There was the guy who ran up to me at a resort pool and slipped me a $100 bill, telling me he’d gotten so much joy from seeing Cooper showing off his moves at the poolside dance party that he just wanted do something nice for him.
There was the jazz and funk band playing a local street festival. After watching Cooper front and center, dancing, stomping, clapping and twirling through the first half of their set, they allowed him not just on stage, but on mic.
There was the couple at the Excalibur arcade who handed me all their tickets after overhearing me tell Cooper that no, we can’t afford the light-up Koosh ball because despite it being a $2.00 toy in the real world, it costs a whopping 2500 tickets in the Fun Dungeon.
There were the women making balloon animals at the 5K, who told me they were “all out of extras” when I asked if the boys could have a couple. But when one of them noticed Cooper as we were walking away, she came running after us with one for him. Just him.
And yes, there was the carnival attendant, who not only popped the balloon for Cooper but upgraded his toy to an adorable plush taco that smiled smugly at the grimacing gingerbread man. Maxon eyed the prizes with a furrowed brow. What kind of justice was this?
“Sometimes people give Cooper a break because he’s a little kid,” I explained as we walked away from the booth.
“I’m a little kid, too,” he reminded me.
“Yeah, but you’re so good at things. Sometimes Cooper needs a little extra help.”
I could tell he wasn’t satisfied with the answer. Neither am I.
Reasonable accommodations or lowered expectations?
Part of me feels like a real jerk writing — and even having — these thoughts. I know these people have the best of intentions, and I’m truly grateful for their kindness and the wonderful experiences that have sprung from it. But I’m starting to wonder about the beliefs that may lie beneath it. And I’m starting to worry about the unintended effects of all this special treatment.
Does a little extra help here and there stem from, or lead to, the notion that Cooper can’t do things on his own?
Does bending the rules now inhibit his ability to operate in society later?
All those people who adore him as a silly, playful, dancing 4-year-old — will they accept him as a curious and capable 14-year-old? Respect him as a competent and productive 40-year-old?
Last but far from least, will Maxon ever get sick and tired of being treated like his needs are nothing special?I don’t know the answers. But I do know this — Cooper is on to us.
Faking it doesn’t fool anyone.
“Mommy. Poo poo boo spaas.”
I waited so many extra years for Cooper to be able to initiate a conversation with me. Now that he does, I’m always afraid I’m going to blow it.
“What? You need to poo-poo?” I ask, excitedly.
He shakes his head. “No. Poo poo boo spaas.”
“Oh boo-boo! You have a boo-boo? A boo-boo in that space?”
That doesn’t make sense and he knows it. He face palms himself then repeats, slower. “Poo…poo…booo….SPAAS!” Slapping the table for emphasis.
Finally, through some miraculous combination of repetition, charades and interpretive dance, I figure out that he is recalling his favorite scene from the movie we watched last week, where a purple bird splashed into the water. We both laugh, partly from the memory but mostly, I think, from the relief of understanding and being understood.
Except sometimes, I don’t figure it out. Sometimes, he gets tired of articulating and gesturing and finding different ways to say what’s on his mind. So instead, he switches gears and blurts out something random and silly, like “Butt cheeks!” At least that’s one thing he knows he can successfully communicate. Even if he really wanted to say so much more.
Other times, I’m the one that gets tired. Tired of the desperate and fruitless translation. Tired of watching him struggle. Just plain tired. So I throw my head back and say, “Ahhh, poo poo boo spaas!” And laugh. He used to laugh with me. But now he just shakes his head and gives me that look. The one that says everything he can’t.
I know you’re just pretending.
I know you don’t really understand me.
I know I didn’t pop that balloon.
A version of this story originally appeared on Medium.
I’m a writer, creative director, wife, and mother of two fantastic little boys, one of whom has Down syndrome. I write about my journey with him on The Mighty. And about my journey in general on my blog, Operation Goosebumps.
diane-levine