Clare Simpson, whose son Eddy was diagnosed with childhood apraxia of speech at age five, said the condition remained widely misunderstood despite the significant impact it could have on children and families.
CAS is a rare neurological speech disorder that affects the brain’s ability to plan and co-ordinate the movements needed for speech.
For Eddy, that has meant years of frustration and anxiety around communication.
“Eddy has known from the get-go that people struggle to understand what he is saying,” Ms Simpson said.
“He is a really smart kid but has had to find ways to get his point across, like explaining things in multiple ways, pointing at objects or pictures, or using me as an interpreter.”
She said her son had become shy around new people because of fears he would not be understood.
“He stresses that he will get picked on because he speaks differently,” she said.
Ms Simpson said concerns first emerged when Eddy was about one year old, but the family initially struggled to access answers and support.
“We sat on waitlists for months and months before we could even get an assessment,” she said.
“The journey has been a slow slog with so many hurdles, including access to appropriate and timely care, and a lack of community awareness.”
She said awareness was critical to helping children receive earlier diagnosis and targeted treatment.
“Most people we speak to haven’t even heard of it before, including paediatricians and other health professionals,” she said.
Ms Simpson recently asked Campaspe Shire Council whether its building could be illuminated blue for Apraxia Awareness Day on May 14, but said the request was declined under council policy.
Despite the setback, she said support from Echuca police had been overwhelming.
“I reached out to the local police station who were more than happy to light up blue for us and put up an awareness post,” she said.
“Eddy is super pumped because they are happy to come out and have a photo with him on the night.”
Ms Simpson said she hoped speaking publicly would help families feel less alone.
“It’s important people understand these kids are intelligent, capable and trying incredibly hard every day,” she said.
11°C