I Have Down Syndrome Radar

I spot them, the people with Down syndrome, a mile away. There’s something about them that’s instantly recognizable to me, something in the way they hold themselves or the way they look at other people. It’s like they are my son Eric, just in different bodies. He’s a five year old boy but I still see him in teenage girls and indeterminate-aged men.  I see Eric everywhere.

I saw Eric in a man the other day. This man was in his thirties, or maybe his forties.  It was hard to tell.  He wore a fanny pack strapped awkwardly to his waist.  I could tell it held his important stuff, whatever that was. I imagined it full of rubber bands and Kleenex and a nearly-unused checkbook.

The man had two companions.  One was clearly paid to be there, a woman who looked unhappy to be held hostage shopping in a grocery store with a retarded man.  She looked away from him, daring fellow shoppers to either smile with sympathy or ignore him altogether. The other, friendlier, loving-accepting woman pushed the cart for him and softly asked him questions from time to time. Shall we get this kind of bread? Do you want orange juice? You know you like orange juice.

Is it fair to say I stalked them awhile?

Skulking between the aisles piled high with plastic-wrapped loaves of bread, I watched them.  I needed to see Eric’s future.

The man walked right past me. I held my breath, looked him in the eye, and smiled deep into his soul, hoping that by doing so I would cause some future someone to smile at Eric that way when he’s a fanny pack-wearing indeterminately-aged manboy.  I needed to see Eric up close in his eyes.  He met my gaze and then dropped his own, smiled shyly to himself in a pleased way, and then went and buried his face in the cart-pushing woman’s neck.

I watched them, seeing my son in this man’s gestures and movements.  Yes, Eric would hoist a half-gallon of orange juice in just that way, broadcasting its unexpected heaviness with his facial expression.  And yes, Eric would sniff every package of bread if allowed to, using his sense of smell to guide him to just the right brand, just the right loaf.  And the shy pleased selfsmile was so familiar.

Eric’s future world will be divided between two types of people. There will be those like the cart-pushing loving-service woman, who will be around him because they like it and because he’s fun to be around and gives nuzzling neck hugs.  And there will be those like the it’s-just-a-job woman, who see being with a retarded boy-man as a job, as the thing that pays the bills.

Its fair to say that I want more of the former in Eric’s future life and none of the latter, but I am not sure it will make that big a difference to Eric in the long run.  I say over and over that it’s not me who’s running the Eric Show; it’s Eric.  He fills his days and his world with people who appreciate him.  I’m powerless to either create this or to stop it, even if I wanted to.

As parents of kids of any stripe we think we have something to do with their eventual outcome, with the people they become.  After observing Eric in action for more than five years, I can say that this is a polite fiction that we maintain in order to feel useful and to assuage our need to feel like something other than simply a biological donor.  Oh sure, I also believe that my kids chose me as much as I chose them, for whatever gifts we impart to one another (which are enormous and irreplaceable), but it’s also clear who’s really running the show here.

And it’s not us.

But for parents of kids-with-special-needs, this free-form thing of we’re-not-in-charge is disconcerting.  We can more or less figure out what the lives of most typical kids will be like (the usual: school, university, job, family, death), but the whole equation is off when special needs are involved.  The only part we know about for sure is that last one, and that’s the one we don’t want to think about.

So my Down Syndrome Radar will continue to be on high alert, looking for clues about the manboy Eric will be one day. Because I’m not quite smart enough to see the clues he’s already left me, the clues he wears in his eyes and in his shy selfsmile.