Families Touched by Speech Disorder Walk to Raise Awareness

Cate Readling's son Michael was a little over 1 year old when she realized that something about him wasn't quite right. Unlike his two older brothers at eighteen months, Michael had yet to begin speaking.

The Oak Park mom took her son to speech and occupational therapists, and after a final evaluation learned his diagnosis: Apraxia.

“I was totally freaked out,” Readling said. “I didn't know what that meant. Or what had to be done or could be done, or how long it was gonna take, or how to fix it.”

Childhood Apraxia of Speech (CAS), a motor speech disorder, prevents children from coordinating their mouth movements to produce intelligible speech. Most children with Apraxia can understand words and communicate by sign but have difficulty controlling the mouth's “articulators”— the lips, tongue, jaw, and soft palate.

Between one to 10 in 1000 children with speech disorders have Apraxia, according to estimates by the Childhood Apraxia of Speech Association of North America (CASANA). Some 470 families of children with Apraxia are members of the Windy City/Chicagoland Apraxia Network, a group that provides parents with information and resources about the disorder.

Holly Olmsted-Hickey, founder of the Chicago-area network, says the group also helps parents of children cope with Apraxia, which is sometimes associated with autism spectrum issues like ADHD and sensory disorders.

“It's like being in an underground maze with a candle that keeps getting blown out,” says Olmsted-Hickey, on raising a child with Apraxia. In the group, “there's always somebody to light your candle.”

This October, the Windy City/Chicagoland Apraxia Network will host its third annual walk Oct. 15 at Ty Warner Park, located at Blackhawk Drive and Plaza Drive in Westmont, to promote awareness of childhood Apraxia and raise funds for CASANA. Registration begins at 9 a.m.; the walk starts at 10 a.m.

Last year's walk drew nearly 400 participants, and to date the group has raised more than $75,000.

Raising a child with Apraxia can feel like “treading water,” says Olmsted-Hickey. “You're trying to move on and move forward. You're just trying to find some direction.”

She hopes the walk sends a message of hope and progress.

Most children with Apraxia learn to speak clearly, according to CASANA. Some speak with subtle verbal alterations, such as mispronounced “r”s, and a few never learn to speak intelligibly. Other disorders, like autism, can complicate a child's ability to overcome the disorder. The process of training mouth muscles to respond to the brain can be long and frustrating.

Readling, who will participate in the walk, says Michael has been through an individualized education program (IEP) and speech therapy, and next year he will enroll in kindergarten. By the time he reaches middle school, Readling expects he will probably be able to speak without any trace of Apraxia.

“Anytime there's something wrong with your child you are upset,” Readling said. But with special education, speech therapy, and community support, Readling says, Apraxia is “manageable."