Friday, April 30, 2010

'He's trying to tell you something!'

'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.


I can really relate to this post as my daughter is non verbal. She only uses two signs more and all done and not frequently mostly during feeding. We are working on picture communication.It's hard for her. I would love, love, love her to talk.. i remember the days when I just wanted her to breath without O2 that day happen, then eat, that day came thank god. I'm still waiting on walking and talking .. some how talking seems the most important. I so want to know what she is thinking what matters to her, what she needs and what she feels. I'm longing too along with Stacey.

I think we all do that -- I know that I wish, sometimes, that if my daughter's seizures would just stop, I wouldn't mind that she can't talk and needs so much assistance. Or I wonder if it would be better to not have the cognitive delays but be in a wheelchair? It's silly, I guess, but I do it! When I hear about the wonderful communication efforts of your son, I wonder if you've looked into speech devices to help him since he clearly wants and needs to communicate? When my daughter did hippotherapy, they had this cool little device that sat on the saddle and she had to push it to stop and start the horse.

Hi Stacey -- We've had the exact same situation when Ben does riding or in so many other situations where he uses signs and people kind of look at us like he's freakish or they just smile and basically ignore him and they really don't want to take the time to learn what the signs mean.

Are there any programs in Kitchener for kids who use sign? There's a program in Toronto called Silent Voice and they have some after school programs and summer camp in a signing environment. You could google them and ask about any local resources. How versed are Carter's school teachers/assistants in sign? We were always frustrated that someone would be said to "know sign when they knew 30 signs -- it would be like limiting a kid to 30 words.

Thanks for sending us those signing DVDs. I haven't looked at them yet but I will.

You will have to tell us about the communication system you're using on the Nintendo device.

Of course it's human to imagine your child in different situations, and to have all kinds of feelings that you sometimes wish you didn't have. I remember when my daughter was born and I saw how completely effortless development was for typical kids -- I would seethe thinking about how hard Ben had to work for something and even then he didn't always get there. I saw how most of what I had in my own life I'd been "given" -- they were gifts I was born with.

I used to have the same longing to hear my son speak. Probably because he is so much older than Carter and we know speech is not possible for him I have been able to let that go. There are so many things I've learned from my son because he doesn't speak. Like how to be in silence with someone and that be okay (I used to be someone who rushed to stuff any silence with words -- I was afraid of what I might find in that quiet). How to look into someone's eyes and truly see them and allow them to see me.

Speech is prized in our culture but we need to celebrate all forms of communication (sign, voice device, pictures, gestures, eye gaze).

Keep us posted on Carter and keep up the signing and any other alternate forms of communication. he uses! Maybe you can find a volunteer for riding who signs or you could volunteer so you could interpret for him.

Hi Stacey,

You don't know me... but I know who you are. My sister is married to your cousin, Jim Doty. Susan passed this along to me because I too have a daughter who has special needs and is non-verbal. She thought I might enjoy your blog.. and I did... very much so.

I, too understand that they are trying to tell us something and everytime I see Allie "singing" along with Barbie in her movies... I think, "Just sing, just say something... come on... I know you can do it"... But still - nothing. Oh she can say words and we always know what she wants for the most part. But, I hate when she is not feeling well and cannot say how she feels or where it hurts - heart breaking really.

Allie is the brightest little thing ever.. but yet she cannot speak. She has been diagnosed with Partial Agenesis of the Corpus Collasum. She is almost 8 and she is the light of our lives. She is an only child and we love her to death. She has motor skill issues and cannot sign very well due to those issues but.. she smiles and laughs like no one you've ever met! Which brings me to the point of my story... Recently, A friend of mine asked me about stem cell research and wondered if Allie's partial agenesis might be cured by this. I had never thought about it.. and when I was tasked with thinking about it, I struggled. It became profoundly clear to me that to change her brain might be to change her. This thought scared me to death. I truly do not know if stem cell therapy is even an option in this case but it made me realize that we love Allie for who she is.. and if it is a possibility we will have to cross that bridge when we come to it. But for now we will just basque in her smile... now that, I wouldn't trade for the world.

Also... we just got Tap to Talk for DSi and our Speech Therapist is programming it. Check it out... it is a great option.

We would love to meet Carter someday.

Mary Henderson

My daughter also has apraxia and a mental handicap. It's kind of nice to meet someone else with the same diagnosis. Katie, my daughter, also rides and also signs constantly, even when her hands are supposed to be on the reins. This year we got a nice surprise, her volunteer side walker knows sign.

Wow! Thanks for all of the wonderful comments!

It's nice to hear from people experiencing the same issues and the same feelings that I'm having.

Carter is currently in the process of being assessed for a voice output device. In the meantime, Mary, we've also been working with the Tap To Talk program on a Nintendo DSi.

Elizabeth, I would love to know more about the stop/start device that your daughter used on her horse.

Louise, I watched in awe at the effortless development of Carter's younger siblings just as you did with your daughter.

Carter's accomplishments are that much sweeter knowing the effort he puts forth to achieve tasks that come easily to most of us. He is just starting to blow bubbles on his
own - something he's been working on for well over a year. He is so proud of himself. And I'm so proud to see that his hard work and determination has paid off.