Three local families are banding together to raise awareness for apraxia, a rare neurological condition, on May 14.
Childhood apraxia of speech (CAS) is a motor speech disorder where people struggle to form words despite knowing what they want to say. Though CAS is specific to children, apraxia can affect people of all ages, and it’s not something that kids outgrow. People with apraxia often work with speech-language pathologists and other professionals to improve the clarity of their speech. Bracebridge resident Jody Hamilton has been explaining the disorder in assemblies, to teachers and doctors, and in various social settings for years since her son Nash was diagnosed.
“Apraxia is when the communication from your brain to your mouth isn’t fully connected,” Jody said. “Nash has a hard time talking, so he has to train his brain to be able to talk so people can understand him.”
When Nash was first diagnosed, Jody had never heard of apraxia. She didn’t know how much he would be able to talk, if he could talk at all, and she feared what it would mean for his comprehension. Once she learned more, she found that Nash and other children with apraxia often have a good understanding of language, but they struggle to create the sounds and movements required for clear speech.
Since then, she’s been immensely proud to see his progress. He went from being nonverbal at age four to talking in 20-word sentences at age eight. Now that he’s older, he’s starting to explain apraxia to others and ask for what he needs.
“He knows what it is and understands it,” she said. “He’s starting to advocate for himself rather than me having to do it.”
The main thing he wants people to know about talking to someone with apraxia is that they may need more time to express themselves. As he finds his voice, Jody will continue to work hard on behalf of her son and others with CAS.
On top of speaking in schools, she has worked with Apraxia Kids Canada and led the charge to raise local awareness. She wants the absolute best for her son, and on top of that, spreading awareness helps create better understanding for all people with speech delays. It also gives hope to other families who might feel lost or alone as they navigate apraxia.
Nash has been at the same school for a few years now, so most people know about apraxia thanks to the annual awareness campaign. A few other students at the school have CAS, which has been a great bonding experience for the kids and their families.
“It feels good to have friends like me,” Nash said.
Jody invites members of the community to wear blue on May 14 in honour of Nash and other local apraxia stars, like his friends Andrew and Kensley. Though each of them has had unique triumphs and challenges in their speech journey, the three of them share a lot in common. They all struggled with key milestones, they each spent time at One Kids Place for therapy, and they’ve all encountered a similar lack of knowledge.
“[My husband Mike and I] went through quite a few professionals,” said Huntsville resident Martina McCann. “Some had never even heard of apraxia, others knew very little and didn’t feel confident in diagnosing it. There was also a dispute on who was capable of actually writing a diagnosis for it.”
Ultimately, the McCanns were able to get a diagnosis for their son Andrew last year. Like Jody, they had never heard of apraxia, and hearing that it was a rare diagnosis made them feel alone. Martina said she’s over the moon to see Andrew, who is seven years old, now connecting with other children who have the condition.
Spending time with Kensley and Nash has shown him that he’s not alone in his struggles, and the same goes for their parents. The McCanns see May 14 as a day not only to raise awareness but also to celebrate all the hard work and progress that Andrew and his friends have made.
“I feel so fortunate to have met both of these families,” Martina said. “They have both helped us navigate our journey thus far. Knowing that you are not alone in this fight is immeasurable.”
Huntsville resident Sarah Hopkins, mother of eight-year-old Kensley, feels the same way.
“I know that any one of us will help each other advocate, give us guidance, recommend services that will benefit our children,” she said. “Although there are times we don’t see each other, our community is a family. We will always have each other’s back.”
Sarah first met Jody after reading a previous article about her advocacy efforts. She didn’t know any other local families that had children with apraxia, and they hit it off immediately. She said Jody has taught her so much, and she was equally thrilled to meet the McCanns last year.
No two children are the same, but because they understand each other’s struggles, talking isn’t always necessary for Kensley, Nash and Andrew. Sarah said it’s wonderful as a parent to see them interact, and she’s looking forward to celebrating them and their connection on Apraxia Awareness Day.
“Honestly, for our family, May 14 is the best day to raise our voice for those who can’t,” Sarah said, adding that it’s a chance to spread both gratitude and education. “Educating and making people aware of apraxia helps others be more accepting of this diagnosis but also helps other parents who may be afraid to come forward and ask for help.”