Tuesday, 22 January 2013

Carter's Story Part 1: In the Beginning

This is the beginning of a five part series of posts that tell Carter's story. Some of you may have read a shorter version of his story that I posted a while back. It was written to be included on the Kilometres for Communication website

I was asked to go into more detail about some of the things we've experienced throughout Carter's communication journey. I was happy to do so but felt it only fair to my readers to break the story down into several posts (my apologies to those of you who have read some of this already).

Here is Part 1 of the 'long version' of Carter's story.

In the Beginning

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 our routine, not because of articulation problems but because Carter had a severe language delay. Different forms of speech 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. 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. She mentioned it was likely the result of a 'yet to be discovered' genetic syndrome, but she was unable to tell us exactly 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.

Click here to read Part 2 of Carter's Story: The Waiting Game


  1. i can hardly wait...don't leave us hanging for too long! ;)

  2. Aww, thanks Diana. I promise I won't wait too long before I post part 2.