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Local mom seeks to raise awareness on rare speech disorder

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UNION COUNTY (WSIL) -- May 14th is Apraxia Awareness Day, still more than a month away, the rare speech disorder is about to get some attention in Union County.

A Wolf Lake mom is campaigning to raise attention to the disorder after her family struggled to understand what kept their son from speaking. Stephanie Ellet submitted a request to the Union County board, asking for a proclamation to recognize the disorder locally, as it is nationally recognized each year.

"It's so confusing, complex and hard to diagnose that I really wanted to kind of help spread awareness about it for other parents that are struggling with this so that they do find hope, and they do know there is intervention," explains Ellet.

Apraxia in children can be confused with Autism, that can often lead to lost time on therapy. It's estimated to affect only one-to-two children in 1,000 and is often misdiagnosed.

Ellet says, she started noticing her son Ryen wasn't forming any words at around 18 months, about the time her previous two sons did.

"And then by the time he was two, I knew that something wasn't right," says Ellet. Initially diagnosed as having Autism, she later learned he had the rare neurological speech disorder, Apraxia.

Speech-Language Pathologist Megan Pender, with Southern Illinois Healthcare says, Apraxia in children is difficult to diagnose, because it looks like so many other disorders.

"It's not something that's just going to get better with time," explains Pender. "It's not something that they'll grow out of, they need intensive speech therapy."

Pender says children with Apraxia know what they want to say, but can't.

"It's not just one of those kids, that's just 'Oh their L's and R's are mixed up, or their sounds don't sound quiet right," says Pender. "They're frustrated, they're angry, they want to communicate, they just can't get the words out."

She says speech is a complex process, one that is lost on children suffering from Apraxia.

"It's not like in an adult, who's had a stroke, where their brain is going to heal," says Pender. "A child has never had this pathway, so we have to teach that pathway."

Therapy for Childhood Apraxia requires one-on-one sessions nearly every day, making the proper diagnoses early on, all the more important.

"You have to have the correct form of intervention and plan for them to be successful," says Ellet.

She adds that once they properly understood the problem, they began speech therapy. She says she hopes by raising more awareness to the existence of the disorder, it might open doors to answers for other parents.

For Ryen, he is adding new words to his vocabulary each week, with his brothers pushing him each day for more.

Joe Rehana

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