Mama and Dad

'He's trying to tell you something!'
By Stacey Moffat

When your child doesn’t speak, he can’t talk back. If you swear, you don’t have to worry about him repeating you at an inopportune time. And you always have someone to confide in, someone who will keep your secrets.

It may seem odd to joke about something so serious, and I don’t mean to be flippant about an issue that affects my son Carter (above) so greatly. But to quote Bill Cosby: “Through humour, you can soften some of the worst blows that life delivers.” Carter, 6, has a wonderful sense of humour, so I wanted to preface this piece with something fun.

Here’s the more serious side of it. Having a child who’s non-verbal also means that when he’s sick or upset, he can’t tell me what’s wrong or where it hurts. As a mother, I feel helpless when I can’t comfort my son.

In addition, even though Carter’s adept at communicating through sign language and gestures, only a handful of people are able to understand his unique form of communication.

And he leads a sheltered life. He goes to a regular school but he’s in a developmental education classroom. There, he spends the day with eight classmates, three educational assistants and his teacher. He comes home from school and has therapy for a couple of hours and then he eats supper, plays in the backyard or watches TV. He’s involved in after-school programs for children with special needs.

Carter was born with Pierre Robin Sequence and a cleft palate. He had his cleft palate surgically repaired when he was one. Three years passed, each marked by my husband saying: “I really thought that he would have been talking by now.”

A psycho-educational assessment at four showed that Carter fell within the range of mild to moderate mental retardation. We didn’t find out that he had apraxia until last year when we had him assessed by a speech therapist from the U.S. who specializes in oral-motor issues.

When the therapist diagnosed Carter with childhood apraxia of speech, I cried. Hearing her confirm what I had long suspected made me feel validated. Finally a professional was willing to put a name to my son’s speech disorder.

Other professionals had been forthright in telling me that Carter’s lack of speech had nothing to do with his cleft palate, but when I asked specifically about apraxia, I was given vague responses like: “It’s too early to tell” or “He’s still young. A lot of developing can happen over the next few years.”

Carter takes weekly therapeutic riding lessons. I stand with the other parents watching, full of pride as he circles the arena on his horse, led by two volunteers. He points to things around the arena and signs repeatedly, trying to tell his helpers what colour this or that is, or what animal he sees in pictures displayed on the walls. It breaks my heart to watch him try so hard to make conversation when I know that the volunteers have no idea what he’s saying. They smile politely and walk along with him, guiding his horse and reminding him to hold on.

“But he’s trying to tell you something!” I want to shout. “He’s telling you that little girl’s coat is red. He has to let go of the saddle and use his hand and finger to sign ‘red!’”

The other riders chat with their volunteers as they pass by and I catch myself feeling cheated. These children have such ease in their interactions. My son’s attempts to relate seem so foreign. And then I start thinking about the variety of needs the riders have. I consider the ongoing struggles caused by each disability and I wonder: would I trade my son’s inability to speak for a different disability?

The idea seems ludicrous. I feel guilty and callous just thinking about it. Yet, as a parent, is it not human to experience thoughts like: “I’m so grateful my child doesn’t have that” or “At least my child is able to do this?” In my son’s case, I can list a number of things I’m grateful for.

But I can’t stop myself from longing for the day when I can say: “I’m just grateful that he can talk.”

Stacey Moffat is a teacher, writer and mother to three who lives in Kitchener, Ont.