The R Word
A father's reaction when he is told his son may have mild mental retardation.
A lot of words and letters have swarmed over me as I listened to the chatter in this office over the past three years. IUGR, premature, NICU, intubation, insurance, IV, vent, clamp down, PICU, aspiration, ventricle, G tube, H tank, EI, PT, OT, feeding, eval, pre-school.
Now a new one appears, after Alex's appointment with a neurologist today as part of his evaluation process for pre-schools. Jill calls me from a payphone after the appointment. "He was a good doctor," she says. "He was a nice doctor. I liked him."
And?
"He thinks," she said, "that Alex may be mildly retarded."
Just a dream, I say to myself. Jill and I were talking this morning about how all dreams are about anxiety, when really you need relaxation dreams. In a dream, you haven't heard what you think you just heard.
Jill tells me we screwed up, that we should have had Alex in a center-based program and not just getting services at home all this time. What does the doctor mean by "mildly," I ask, feeling that this word could be crucial. Two points below the norm, Jill replies. Then she says, "I'm feeling kinda sad," and her change runs out.
I leave a message for the doctor. He's with patients all day today, his receptionist reports, and he won't get the message until tomorrow. I tell her to try to get him the message today, that he saw my son earlier and gave a disturbing diagnosis. What was the diagnosis? she wants to know. I say the words again. There's a moment of silence that I will not break -- let the words linger over someone else's neck on this sunny, early-summer afternoon -- and she says she'll try to get word to the doctor. I thank her. One part of me is afraid he'll never call back. One part of me is afraid he'll call back immediately.
All right, let's look at this:
-What's the norm? What does "two points below the norm" mean? What is "mildly?"
-Alex's delays are more like 15 months, not just a year, Jill reports. But he says little and his language skills are basic. It's hard to fathom what's going on in his head. How can anyone tell where, or how, he is?
-Jill says the doctor agrees with that, and that we won't know for sure for several more months, if not years.
-If this doctor's so good, how come he can't get messages delivered in the same day?
Oh, I'm sure he's good - by now, Jill has learned the hard way how to recognize a quack -- and I can't say the news surprises me. Alex still doesn't hug or kiss. He rarely comes when called or meets your eyes. He wobbles and weebles and he falls down. I was just saying to myself the other night that the R word wouldn't surprise me at all. And it doesn't.
It does, I'm afraid, open another corridor of care for a troubled child - maybe a troubled adult. Walk down the corridor and open the doors to find other corridors. Just as Jill always said that she only wanted Alex not to have to ride the short school bus, now she says she'd be happy to see him on any school bus. Now she says all she wants is for him to be able to support himself. What's behind the doors in this new corridor?
"He has a small head and a small brain. You hear the words 'mildly retarded' and you're not in a good mood," Jill says on the phone when she gets home. "And don't call it the 'R word.' It gives a word a lot more power than it maybe should have."
So now I sit here in my office, and if not for the calendar on the wall and the bags under my eyes, it might be 1998 again. I can't feel my toes or my teeth. The chatter of co-workers and the picking of a cover photo for our next issue seem pointless. I am surrounded by people who have not heard what I have heard. Breath is short. My cheeks tingle the way they do when I'm sure I must have dreamed hearing something that was said to me clear as a bell.