Local parent works to spread awareness of child’s disorder

A local parent is doing her best to spread awareness about the neurological speech disorder apraxia, which has resulted in city officials designating May as Apraxia Awareness Month in Hot Springs.

Last April, Olivia Brien’s 5-year-old daughter, Raylynne, was diagnosed with childhood apraxia of speech, or CAS. Brien said that she had never heard of the disorder, and neither had her daughter’s primary care physician.

“The easiest description I have been able to come up with is that my daughter understands your entire conversation, and she knows exactly how she wants to respond, but she has to think of every single movement that it takes to produce every type of sound to create a word,” Brien said. “In the process of her having to evaluate every motion, her brain kind of disconnects itself from her muscles that she would use to produce speech, and then is left with just sounds that do not produce words.”

Before being diagnosed with CAS, Brien’s daughter was very shy around other children and could only say around 25 words. In the year since she started taking speech therapy classes for CAS, Brien said that Raylynne has gained self-confidence and can now speak around 80 words.

She has become so confident in the last year that Brien says she now frequently introduces herself to strangers. “She loves introducing herself … she will introduce herself to anyone, anywhere. She will walk up to people and say ‘Hi, I’m Ray.’”

Brien said that Raylynne is still difficult to understand; most people can make out around 60 to 75 percent of her speech. But Ray — who cannot pronounce Raylynne — is no longer afraid of talking to people after the last year of speech therapy.

The therapy, Brien said, has improved her life “100 percent.” Before the therapy, she had many tantrums because she wasn’t able to express herself. Now she is able to. Her speech therapist — Angie Joiner with New Hope Therapy — “has literally been a godsend in helping Raylynne,” Brien said.

Due to the rareness of the disorder, Brien said that many doctors and insurance companies don’t know about it. Brien has made it a mission to bring

awareness to CAS so that other children are able to get the help that they need and have a better chance at being able to live a normal life in the future.

This push has led to her daughter getting to meet Arkansas Gov. Asa Hutchinson last week. Wanting to get the word out more locally, though, Brien approached Mayor Pat McCabe’s secretary. This resulted in the city asking Brien to write a proclamation for its meeting on Tuesday, having the city of Hot Springs recognize Apraxia Awareness Month.

While Brien’s insurance has helped them, and her primary care physician has done research on CAS to be able to help the family more, Brien said that the lack of knowledge of the disorder means that many kids won’t get the help that her daughter has received.

“People need to know (that these) kids need more help,” Brien said. More awareness of this CAS, Brien said, will lead to more people with CAS being able to get jobs or even be able to talk on a phone.

“If we are able to do this, they would be better citizens,” Brien said.