Revising the rules.

He was clearly excited and he clutched his ticket tightly, keeping his eyes on the airport gate agent. From time to time he glanced at other passengers milling about and waiting to board the plane, answering their questions—if they acknowledged him at all—with a quick nod and a smile. His brother, younger but over a head taller, kept a protective hand on his shoulder and whispered encouragement to him from time to time. It looked like a first flight for the excited man in his late 30s, the man with Down syndrome.

Oh, I can spot them a mile away. Down syndrome radar. They draw me in like magnets and I find myself unable to look away. Like a traffic accident. I stare at the Down syndrome people, taking in the almond eyes, the flattened head and facial features, the vacant look of someone not quite in sync with the rest of us. “That’s Eric’s future,” I think, cringing a little. “That’s Eric.”

I hate that I feel shame over how I think people will view my son one day. At three-and-a-half feet tall and five years old, he’s still cute. Manageable. He sort of does what people tell him to do, and he’s still little enough to be picked up and bodily forced into compliance if need be. But in ten years, twenty, thirty, he’ll no longer be cute. Instead, he’ll be the strange little man-boy that people turn away from and pretend not to see. And I hate that.

Sure, there’s a chance that Eric will mainstream and learn to talk and use a toilet and one day go to college, right? I should look on the bright side and hold him in a space of idealistic perfection. Right? Sure. I can do that. And maybe a meteor will strike the planet and obliterate half of us. I figure there’s about the same chance of both happening. Meteor. My kid going to college. Same chance.

When our kids are born we already have their lives mapped out. We can’t help but do this. We imagine them walking, talking, playing, growing up. So sure, things change along the way, but for most of us those basics are pretty well covered. Walk: check. Talk: check. We know what we can count on. But when your kid has special needs it all goes right out the window. You throw away all those plans. And you can’t really make new ones.

Eric is my fourth child. By Number Four I thought I had it pretty well wired.  I had it all figured out, all the things that were going to give him a perfect life, make him perfect. Co-sleeping. Breastfeeding. Organic everything. Slings. Gentle toys. Absolutely no TV. I became a Sanctimommy. I knew that my Attachment Parenting holistic organic Waldorf ways would help my kid be the best little kid-with-down-syndrome he could be.

It took me three years to figure out that my Sanctimommious ways were not making a lick of difference to Eric. Those wooden Waldorf toys? They’re great for throwing repeatedly against the wall. They make a lot of noise and they dent the walls in artistic patterns. Co-sleeping? He’s a snorer who prefers sleeping on the floor in his sister’s room. Breastfeeding? His weirdly-shaped palate made nursing difficult and he remained stunted, tiny, and sickly until I finally wised up and gave him real food. Whatever he would eat. That kid is now a walking carbohydrate. And TV? Ha. I say Ha. TV is Eric’s life. He stands three inches from the screen, devouring it with the cells of his face, ruining his eyesight and absorbing Curious George’s radioactive rays or whatever bad stuff happens to kids who stand too close to the TV.

And I no longer care.

Oh sure, I care. I care that Eric stops throwing wooden missiles at the walls long enough for me to make dinner. I care that he not disappear into my bedroom and remove every ounce of bedding from my bed to make himself a nest to lie on. I care that he not toss all the clean laundry over the balcony rail. And I care that he not take off his pants and loaded diaper while no one is looking and deposit whatever’s inside onto the floor somewhere for someone else to find—surprise!—and then climb onto the counter to do a little dance. I care.

So Eric watches TV. A lot of TV. It seems to make him happy.

I like to think I’m no longer in denial. I was for a while. Prevented by Eric’s father from talking about Down syndrome to anyone or telling people about his diagnosis for a year, I developed an acceptable alternative: Okay, I would accept that Eric had Down syndrome, but his would be the mild kind. Eric would be able to live independently, go to college. Eric would be Corky.


Having a kid with special needs teaches you a lot of things. Mostly that you can’t plan anything, that it’s really all out of your hands anyway. I don’t know who’s calling the shots here, but I do know it isn’t me. I suspect it’s Eric. And he’s good with how his life is shaping up.

Will my son be the little man at the airport one day? Maybe. And I think he’s okay with that. It’s up to me to be okay with it too.