special needs

Somehow I’ve never quite warmed to using the term “special needs.” I understand that it is the current socially accepted, politically correct moniker for disabled people, and a departure from harsher terms such as “handicapped” or “retarded,” (or the things I sometimes think in my darkest moments such as “messed-up, basket-case, train-wreck.”) But I feel like it sugar coats the real—sometimes colossal—problems and challenges disabled people have.

I’m not sure if the term “special needs” really benefits kids like Calvin. Perhaps it’s more useful to others. As an umbrella term, “special needs” couldn’t be more vague, allowing society's mainstream to avoid—avert their gaze—and ignore half the reality of what is often a painful, sometimes repulsive, pathetic situation. “Special needs” holds kids like mine at arm’s length from others—sequesters them—and perhaps aids others in feeling more comfortable. In my cynicism I imagine folks thinking, “that kid is special ... isn’t that quaint.”

I prefer just saying it like it is. “My son has pretty grave neurological problems, retarded development and intractable epilepsy—he can’t talk, can’t walk by himself and is still in diapers.” It takes longer to get out, but accurately describes my boy. And if the person I am speaking with doesn’t react by staring blankly open-mouthed or saying "huh" and immediately changing the subject, I will then add that, though Calvin is seven going on two, he has come to a place where he seems to be a pretty happy, very affectionate child ... which brings to mind another thought.

The other day an acquaintance kindly wrote to me about children with special needs. I genuinely appreciated her intentions, which were warm, kind words of concern from an obviously generous heart, though I couldn’t agree with some of what she had to say. She wrote, “I believe God gives these kids such a sweet disposition to make the journey easier.” I’m not religious—my view of a celestial essence having everything to do with the extraordinary chance of nature and nothing to do with a man upstairs calling the shots. But my impulse—nonetheless—was to think, why didn’t god save everyone a whole lot of grief, burden and suffering and just not give these kids such heinous afflictions to begin with? Moreover, these “special needs” children don’t all have sweet dispositions—I know from experience—though society might have us think so perhaps to assuage the guilt factor. My son has run the gamut: from colicky infant to irritable, uncomfortable, suffering “toddler” to completely-fried-zombie-kid and finally to a pretty happy, albeit stubborn, sweet little boy—at least for the time being.

So anytime I hear the term “special needs” I kind of cringe, and then do my best to let the ordinary folk know that—though Calvin is an extraordinary cutie-pie—he is a pretty messed-up kid that one doesn’t just fold up nice and neat and put away in the “special needs” box.

photo by Michael Kolster