Carter's Communication Journey

I wrote Carter's story (below) to be included with others on the Kilometres for Communication website. All the stories on the site are written by people from across Canada who communicate differently.

I've shared lots of info about my son on this blog so you wouldn't think I'd have a problem putting something together, but I wasn't sure I could capture what Carter is all about in just a few paragraphs. I tried to mention some of his strengths and interests, and of course, a little of his history. I didn't want to focus solely on his communication as that's just one part of his story, but in all fairness it is a fairly big part at this stage in his life as we try to support him in developing his communication skills.

To help get my creative juices flowing, I thought back to a short bio I wrote about myself that I've used when submitting pieces of my writing to various contests and websites. I thought about the things I highlighted about myself (past experiences, interests, family, etc.).

Then I thought about my bio on Twitter. You're given a mere 160 characters to define who you are so you have no choice but to keep it short and sweet and to the point. As a warm-up I decided to write a 160 character bio for Carter:

Always smiling, loving & goofy, resilient & easy-going, lover of books, animals, water-play and the outdoors, brother of two, partner in crime=Bentley, cool communicator. 

I really wanted to add, Apple of his Mom's eye, but, that would have been too long for the 160 character limit.

After much contemplation, here's what I finally put together for Carter's story:

Carter was born with Pierre Robin Sequence (small lower jaw) which resulted in a cleft palate. Although he came home from the hospital three days after his birth, Carter was admitted to McMaster Children's Hospital five weeks later. He was challenged by feeding and airway issues and he struggled to gain weight. A fighter from the get go, Carter returned home after a two week hospital stay, and with medical interventions to help with his feeding and breathing issues, he continued to thrive.

Just before his first birthday, Carter showed the same resilience when he had his cleft palate surgically repaired.

My husband and I were prepared for the increased likelihood that Carter would need speech therapy. We knew it was probable that Carter would have articulation problems when his speech developed (common in children born with a cleft palate). What we weren't prepared for was his need for occupational therapy, physiotherapy, and behaviour therapy as well. Carter didn't follow the typical path of development and he required intervention in all areas.

Regular speech therapy sessions became part of a weekly routine, not because of articulation problems but, because Carter had a severe language delay. Years of therapy would prove to be futile as speech never came for Carter.

Instead, he communicated with facial expressions and eventually sign language and gestures. We marvelled at his easy-going nature and wondered how he wasn't more frustrated when he was not readily able to communicate his wants and needs. But he was, for the most part, a content little guy, happy to abandon his first choice and move on to something else if what he wanted wasn't made available to him.

It was a struggle coming to terms with Carter's lack of speech development. The doctor explained that it was not related to the Pierre Robin Sequence or cleft palate. Although she mentioned it was likely related to a 'yet to be discovered' genetic syndrome, she was unable to tell us why Carter's wasn't talking.

A speech pathologist from the U.S. diagnosed Carter with Childhood Apraxia of Speech and dysarthria, but there was still no explanation as to why he had these conditions. Eventually the 'Why' questions were overshadowed by our concerns around Carter's lack of functional communication. We needed to give Carter a way to express himself so that he would be understood by everyone.

We bought Carter a Nintendo DS and started him using a speech program that ran on the device (this was just before iPads became available). He loved it! I programmed various things into the device and Carter was able to label items and take part in basic interactions. It was a great introduction to a simple speech generating device for Carter but he quickly outgrew its capacity. Eventually we were able to get him a Vantage Lite speech device which he has been using for almost two years now (since December 2010).

We continue to watch with excitement as Carter's communication skills develop. A natural goofball, Carter's sense of humour has blossomed with his new found capability to speak more freely with his talker. He tells jokes, gets into potty humour with his brother and sister (underwear anyone?) and he loves to comment and contribute to conversations as best as he can. There's still a lot he needs to learn in terms of language skills but he's proven his capability for learning and I'm confident he'll continue to make progress.

In the meantime, Carter is likely to be found with his younger brother and sister doing one of his many favourite things, like splashing in the pool in the summer, downhill skiing in the winter, perusing books, playing cars or hanging out with his partner in crime, Bentley (service dog extraordinaire).