monroe Town recognizes children with apraxia
MONROE — Having a child with apraxia can be frustrating, said Patricia Miller, 33.
The motor speech disorder, which is a disconnect between the brain and the mouth muscles and affects one to 10 out of 1,000 children, is difficult to diagnose and treat.
It’s also something most people aren’t aware of, said Miller, who lives in Monroe. Her 5-year-old son Jack has apraxia. He was officially diagnosed at 4, and she’s worked to draw more attention to his condition and his needs.
“When you ask someone to tell you what Down syndrome is, they can likely tell you something about it, and some of the characteristics,” Miller said. “But you ask someone about apraxia, and a lot of people don’t know what it is.”
Miller and several other Monroe parents of children with the condition gathered at Town Hall on Monday afternoon to hear First Selectman Kenneth Kellogg read a proclamation declaring Tuesday as Apraxia Awareness Day. At the event, Kellogg admitted that he didn’t know what apraxia was until Miller contacted him to arrange the proclamation.
“That just (highlights) the need for awareness,” Kellogg said. “Through awareness comes action and, hopefully, results.”
Miller is the Connecticut outreach coordinator for Apraxia Kids, a national nonprofit that supports families of children with apraxia, as well as the professionals who work with the families.
She said the organization works every year to get more towns to officially recognize Apraxia Awareness Day. Last year, she said, four communities did so and this year, 11 towns and cities — including Monroe and Bridgeport — will declare Tuesday as Apraxia Awareness Day.
In apraxia of speech, there is typically a disconnect between the brain and the muscles in the mouth that are involved in forming words and sounds. This means that children with apraxia know what they want to say, but can have a hard time getting their mouth to create the right sounds to express those thoughts.
Apraxia of speech isn’t curable, but children with the condition can benefit from speech therapy and other interventions. During his proclamation, Kellogg said those who don’t receive appropriate therapy for apraxia have a higher risk of developing problems with such skills as reading and writing.
“Every family needs support for things like (apraxia) and every child needs treatment for things like this,” Kellogg said.
One of the parents in attendance at Monday’s proclamation in Monroe was Audra Westphail, whose 7-year-old daughter Marilyn has apraxia and has, through treatment, gained the ability to say an increasing number of words and phrases. Westphail said proper intervention is crucial for children like Marilyn.
“This is one of those issues that’s tough to diagnose and tough to treat,” Westphail said. “The sooner they are diagnosed, the better.”