Being able to communicate with your children is something all parents want to do, because it lets you know what is going on in your children’s lives.
However, for the Chamzuk family, communicating with their youngest daughter has been a challenge that only recently has shown signs of improving.
Seven-year-old Kiara was diagnosed in January 2010 with the neurological condition apraxia, which inhibits the flow of muscular commands from the brain. In her case, the apraxia interferes with her ability to speak.
For her mother, Shelley Meakin-Chamzuk, the news was devastating.
“It was meltdown 101 I tell you,” she said. “I didn’t know what I was going to do.”
The news was even more shocking for Meakin-Chamzuk because she understands very well the importance of verbal communication, as she has been coaching 4-H kids on their public speaking for more than 20 years.
Before she was diagnosed, Kiara would communicate primarily through pointing or other gestures, or by doing what her younger brother, Kadin, did, Meakin-Chamzuk said.
By the age of three, Kiara wasn’t talking yet, and her parents were beginning to wonder what could be wrong. However, because she was the fifth of six children, there was the belief that maybe she felt she didn’t need to speak for herself.
“We knew something wasn’t right, but everyone would just tell us, ‘Oh well, she just doesn’t think she has to speak,’” Meakin-Chamzuk said.
It wasn’t until the staff at Busby School and a number of speech therapists sat down and worked with Kiara that they started to have an idea of what could be wrong. Even then, it took close to six months of work to determine what exactly the cause was.
There are many neurological conditions out there that result in inhibited speech, so to narrow Kiara’s down to apraxia was very difficult. Throughout the process, Meakin-Chamzuk said she and her husband, Ron, were kept in the dark about what the doctors and specialists were testing for until they had identified apraxia as the cause.
Now, with the diagnosis confirmed, and Kiara receiving targeted treatments, Meakin-Chamzuk said she has seen a marked improvement in her daughter’s verbal interactions.
In the last year alone, Kiara has gone from having no verbal communication to now where she can verbalize her basic needs and wants.
Yet, things are not at the point that would be considered normal.
“We can’t have, at this point, a conversation with her,” she said. “We can’t have a full conversation that anybody else could have with their seven-year-old. That’s not possible.”
Kiara is able to speak small sentences here and there, but she can’t string them together to tell a story.
One of the biggest things to benefit Kiara’s progress has been the Vantage Lite machine, which she received in July 2010 through the help of speech therapist and neighbour Doris Meinzinger.
The Vantage Lite is a device that allows the user to communicate through pushing buttons on a touch screen, and can be programmed with messages that are relevant to the user’s personal situation.
For Meakin-Chamzuk, having that Vantage Lite was a “truly life-changing” experience.
“When she started communicating with us through that machine, it was the most amazing thing in the world,” she said. “She could finally tell me what she wanted and what she needed.”
The only downside to the Vantage Lite was its $9,800 price tag, which was partly covered by different grants and by a generous donation from the Busby Lions Club, Meakin-Chamzuk said.
“It’s worth a lot of money, and I can see why,” she said. “It’s changed our life in the sense we can at least know what she needs at all times.”
The major motivation to find a device like the Vantage Lite came one evening when Kiara was struggling to tell her mother something.
That night, she was trying to say she wanted a bath, but wasn’t able to communicate that for over an hour. In the end, she took her mother by the hand and pulled her to the bathroom and showed her the bathtub.
It was that episode that drove home the need to find a way to communicate Kiara’s everyday needs, and shortly after the school came across programs and devices, including the Vantage Lite, that would fit the bill.
There is a stereotype that children and adults who have neurological conditions are also often developmentally delayed. In Kiara’s case, that’s not true, Meakin-Chamzuk said.
“They actually say she is right on par with her grade level,” she said, adding she can read and write at her current Grade 1 level.
Kiara loves to read, her mother said, because “that’s one way she can communicate with her own self.”
Having trouble communicating with others can be a frustrating experience, which is why Meakin-Chamzuk has a simple mantra for Kiara to help her cope at school.
“You are smart, you can keep up with every other child in your grade, but you can’t communicate,” she said.
Frustration can still bubble up at times for Kiara, and it’s at those times when she simply can’t speak at all.
“She’s frustrated, and you can tell, but she can’t speak it,” Meakin-Chamzuk said.
Fortunately, the Vantage Lite, as well as flash cards Kiara carries when she doesn’t have the device, has helped keep the frustration at bay for the most part.
Having a child with any condition that affects their health or development is an experience that makes you re-evaluate what life is, Meakin-Chamzuk said.
“It just makes you realize that not everything is perfect,” she said, adding it’s hard to truly put that into words.
Kiara’s condition has also changed how the Chamzuk family interacts. The family is more physical now, and hugs a lot more, because that’s how Kiara communicates.
Meakin-Chamzuk is also floored by how the community has come together and rallied around Kiara. It shows her that there are still people out there who do care.
