Friday, September 21, 2012

A place to call our own

By Stacey Moffat

My son Carter (above) has repetitive behaviours and sensory issues. He’s non-verbal and struggles with social skills. Yet he doesn’t have autism.

Carter’s fine-motor skills are weak. He used to drool (before he had surgery) and has problems with motor planning and coordination. But he doesn't have cerebral palsy.

He’s developmentally delayed and has low muscle tone. But it’s not Down syndrome.

Carter's got a smorgasbord of problems that he shares with peers who have autism, cerebral palsy and Down syndrome. But the smorgasbord doesn’t lend itself to any specific diagnosis, other than the catchall "global developmental delay." So we've missed out on the benefits of being part of a defined community, a support network.

Although speech problems are part of the worlds of autism, cerebral palsy and Down syndrome, parents seem to stay rooted within their child's diagnosistic group. No one branches out to form new groups based on common needs, like communication. Who can blame parents for sticking with their groups? If I was part of an organization that offered resources and support and access to loads of parents who’d blazed a trail before me, I’d immerse myself in that group and stay put too.

I tried to do just that when Carter was born. I joined a support group for parents of children with a cleft lip and/or palate. I wanted to learn from other parents and give back by sharing my own experiences.

But as time went on, Carter seemed to be lagging behind the other children. Other parents talked about their kids speaking and meeting typical milestones. I began to realize that Carter was different. He wasn't a textbook case of a child with Pierre Robin Sequence and a cleft palate. But I didn't understand why.

Although I enjoyed the sense of community, I became anxious with the questions new parents were asking: “How is your child doing now that he’s had the cleft repair surgery? Is he having any issues with specific speech sounds? Do you think he’ll need speech therapy?”

I didn’t know how to answer their questions. "No, Carter isn't having issues with specific speech sounds because he isn't attempting to speak!"  I felt a panicky need to ask my own questions: "Your child is starting to speak? How? Why isn’t my son speaking? Isn’t it normal for there to be a speech delay? Why is my son different? What's wrong with him?"

I didn’t ask my questions. Instead, with great sadness, I concluded that the support group was no longer a good fit for us and stopped going.

I was isolated. We were dealing with something bigger than a birth anomaly and our issues went beyond what this group was designed to support. But where would we find support when we didn’t really know what it was we were dealing with? Our issues didn’t fit neatly into a package like Down syndrome or autism or cerebral palsy.

I felt like a drifter, alone at sea in search of answers. What was going on with my son?

My search led me to a speech therapist from the United States who specialized in oral-motor issues. She diagnosed Carter at age five with childhood apraxia of speech and dysarthria. Armed with this information, I was hopeful. Perhaps there was a new speech community we could call our own.

I went to a conference in Pittsburgh by the Childhood Apraxia of Speech Association of North America. This was it, I told myself. I was going to educate myself and make connections with parents and therapists who understood Carter’s speech problems.

I mingled and chatted. I listened to parents tell stories about their challenges to get their children to pronounce specific consonant sounds and string words together. I even attended a couple of sessions on how to work with children to improve speech clarity. Speech clarity? I didn’t have a clue what these parents and therapists were talking about!

Carter’s speech consisted of monosyllabic vowel sounds. He had no consonant sounds. There had never been any babbling – unintelligible or otherwise. Why was I attending a workshop on speech clarity?

We didn't fit into this new speech community either. We were like square pegs and I was trying to fit us into round holes. The realization was devastating.

Shortly after that conference I sent a video of Carter making his limited sounds to Nancy Kaufman, a speech therapist and renowned expert in the area of apraxia. After viewing the recording, Nancy phoned me and, with great compassion, told me to find Carter the best voice device possible.

That’s what I did. And it opened up a whole new world for Carter. He uses his talker at home and at school and he’s starting to use it more when we’re out and about. He makes comments and requests. He asks questions. And he now has a much easier time interacting with everyone, most importantly, his peers and siblings. A goofball at heart, he loves making people laugh with his jokes. And, like his brother and sister, he’s discovered potty humour (he loves the underwear key on his talker).

Carter has had his talker for just over two years now. But we still feel alone. It’s been hard to make connections with other parents of children who use devices. I don't believe it's because they're not out there. I believe it's because we’re small in numbers and we’re all taking separate routes to a similar destination.

If Carter could get together with other children who use talkers I believe it would motivate him. I also think it would be good for him to be around others who communicate at a slower pace. Too often he gets short changed because people don’t allow him the time he needs to say what he wants to say.

I’ve floundered in search of a supportive community for Carter his whole life. Sometimes I’ve felt bitter that Carter doesn’t have a diagnosis that would allow us to fit into a well-defined group. But I’m trying to look at things differently now. Carter just turned nine. I can relate, somewhat, to many parents of children with special needs, because Carter shares traits with each and every one of their children. And for that I am grateful.

I do still have a dream, however. It's that parents whose children use voice devices (no matter what their diagnosis) come together in a supportive group of their own. If you’d like to be involved in an AAC network, please e-mail me at

Stacey Moffat is a former teacher raising her three kids. She volunteers with ISAAC Canada and Gail Fisher-Taylor of Kilometres for Communication to create an AAC network. She blogs about raising a child who communicates differently at More than Words.


Dear Stacey,
I will be directing the parents of my students to this article and your blog because I know that many of them feel alone in their own journey with their children sometimes, too. You are a voice of honesty, hope and resilience. Thank you for putting your experience out there and reinforcing how very important community is.

With great respect,
Ida Mae West-Simone
Special Education Teacher(and Mom!)

Stacey - what an honest post of being stuck in an undefined place. Even though my daughter has a diagnosis (cerebral palsy), I can identify with much of what you've said. Having a network to share resources and support one another is so key. I'm so happy to hear that you're trying to create this network and I'll be sure to share this post!

Your story sounds familiar to me on so many levels. My daughter has been using an AAC device for several months now (she uses an ALT-Chat) and she is doing amazing! Even though we fit into an actual diagnosis (Incontinentia Pigmenti), Hannah's presentation is different than those that I find on the support groups. She used have major skin problems (blisters, ect.) and we went to conferences dealing with the skin, teeth, and eye concerns relating to her disorder, but over time those were not the focus of her needs. She had no language and she had Cerebral Palsy like muscle problems. Hannah was globally developmentally delayed, seizure affected, autistic-like, and even after having her cleft-palate repaired she had no other language or sounds. I just didn't (and still don't) feel like we belong to any one group. Since the age of 4 when her seizures were growing in intensity she was put on multiple seizure meds and she has developed some language through that process, she is very limited in what she can communicate (I understand a lot of what she says but that is because she is so repetative). I have watched her feel so frustrated that those around her had no idea that she even could or wanted to communicate. Many people don't even make eye contact with her or try to engage her when they see her in a wheelchair. The Alt-Chat is beginning to change things but I still have a difficult time getting her school program to use it appropriately (it is not just to be used when it is convenient for them...IT IS HER VOICE!). Sorry that I wrote so much, it is difficult when no one really gets it. All the best to you and your beautiful son! Laura Bell in California

Thank you, Ida Mae and Anchel for your kind words.

Thank you for sharing a bit of your daughter's story. I'm glad you included your e-mail address.
I'll be in touch!

What about Camp Chatterbox?

Or the AAC Institute's Parent's corner?

I've heard that Sunnyview School in Toronto has considered starting something similar to Camp Chatterbox. Sounds like a great way to network with other parents of AAC users.

My son is also 9. I'd love it if he was using some kind of communication device. Nothing I've tried so far has worked as far as using language is concerned, but I haven't given up yet!