By Louise Kinross
"Is he mentally retarded?" she asks.
I am holding my 19-month-old son in my arms at a visit to a dental clinic in a children's hospital.
I've been up all night giving Ben Ventolin masks for his asthma, and I'm still reeling from her previous questions, asked in a most pitiful tone.
"Will he ever walk?"
"Is he short for his age?"
This student—training to be a pediatric dentist—knows that kids with Ben's genetic condition can have missing, fused or oddly-shaped teeth.
But once she begins grilling me on my baby's height, ability to walk and mental faculties, my fears about Ben's teeth—about the possibility of him needing to wear full dentures as a kid—evaporate.
I am stunned. How is this related to his teeth?
"No," I say in reference to the mental retardation.
"Oh, well, I guess you wouldn't know that yet anyway!" she offers with a perky smile, as if to say: "You better not get your hopes up lady, and just who do you think you're kidding, anyway?"
I feel like I've been dropped into traffic on an eight-lane highway.
We've seen dozens of specialists about Ben's genetic deletion and I've got my head around the likely ways in which Ben will be affected. I've found a place where I can be okay with some kind of mild learning disability (no, not "mental retardation" or intellectual disability). I don't yet realize how challenging it will be to get Ben to walk and the degree to which his growth will be stunted.
But now all of those "safe" parameters I've held in my vision of Ben's future have been ripped away. Warm saliva pools in my mouth. My heart pounds and something is pressing against my chest. The walls of my chest are caving in.
Today was to be a simple visit to talk about Ben's teeth (he only has a couple). I was expecting a quick look in his mouth, maybe some x-rays.
Instead, she takes it upon herself to conduct a detailed medical history using the most stigmatizing and value-laden language.
After taking x-rays she tells me that Ben does indeed have "adult" teeth buried in his gums, and there's no need for any intervention at this point (or for dentures!).
I maintain my pleasant demeanour and thank her profusely and make my way down into the dark, concrete belly of the hospital—where fear and grief and rage take hold.
I am terrorized. I shake.
I cry all the way home.
I spend the rest of the day trying to convince myself that my bright, sociable, loving little boy is not "mentally retarded."
How could this most terrible of stigmas befall my beloved son?
When I was in grade school I was the kid who aced tests, scored a few grades ahead on standardized testing, and made up a "game" that involved timing which student could read book passages faster.
My Dad—a great proponent of the value of education—liked to quiz me on where my friends "stood" in the class.
By the time I got to university, there was no separation between "me" and "my marks." Without my marks, there was no me. Once I dropped a university course at the halfway point because I realized I was only going to get a B. In my world, if you couldn't get an A, it wasn't worth doing.
I don't call anyone because I fear uttering the words "mental retardation." It's as if speaking the words could make them true. I need to maintain the iron-clad story that Ben is cognitively normal—a story I still believe to be true aside from the anxiety that this dentist has stirred up.
I must protect my son against the judgment of others.
How dare this uppity dentist imply that my son is "mentally retarded" when she knows nothing about him?
A month ago Ben had a developmental assessment and we were told he was "fine cognitively."
At one year, his pediatrician said "he doesn't appear to have global developmental delay."
"There is no way this child has mental retardation," says my therapist, a family doctor who's observed Ben during my weekly counselling sessions for a year. Ben comes with me and sits in his car seat, babbling and playing with his Sesame St. characters.
I rail against the dentist.
D'Arcy is working the late shift and I call to tell him about the visit, but somehow the words lose their sting in translation. He responds in his usual way, which is to deny that there could be any validity to these prognoses.
"Louise, that's ridiculous. We know that's not true. Now don't get yourself all worked up about this."
I put Ben to bed and pace around the house.
I'm starting to learn that my usual modus operandi—calling friends to share what I'm going through with Ben—doesn't help.
Many don't have kids, and those who do know nothing about having a child who is different. They tend to minimize what I'm going through or tell me how sorry they are.
I've always cared too much about what other people think. Now I often choose to sit in the dark and let these terrors about my child run their course.
But not tonight. I give in and call my good friend. I want her to tell me that there is no way on God's earth that Ben has "mental retardation." I want her to tell me that this dentist is crazy.
Just whose side is she on, anyway?
"Oh Weezie," my friend says genuinely. "That must have been terrible."
But she doesn't offer an opinion on Ben's intelligence.
Does she think Ben is "mentally retarded?" I don't dare ask.
My friend begins to tell me about a work colleague who met a mother and her baby with Down syndrome. They were in a waiting room, and the friend began talking in baby talk—gooing and gaaing—with the baby.
The mother, thinking she was in some way denigrating her daughter, took offence, giving her the evil eye and taking the baby away.
I can't make out the point of this story, but I'm suddenly aware that for my friend and her colleague, who don't have children, the notion of a "mentally retarded" child is an interesting topic of discussion at lunch. It's about as far away from reality as Mars.
And I say as much. "This is just a philosophical discussion for you. This is happening to me, this is something I'm going through, this is about my son who I love more than anything in the world."
And my friend says: "Louise, this is happening to me too. I am going through this with you."
And I tell her "No, you're not." And I start to cry. And I hang up.
And then I scream. And it turns into sobs, big heavy, heaving, sobs.
And I walk up and down the stairs.
And I wonder what Ken, our neighbour on the other side of the semi-detached wall, is thinking. And what is happening to the picture of the happy little family we've been presenting to the neighbourhood.
What am I going to do? What am I going to do?