Words to live by

Imagine having children who can’t tell you if they don’t feel good. Imagine if they can’t communicate what they want to eat or what they want for Christmas.

Imagine if they can’t communicate with you at all.

This was the reality for the Wheeler and Van Dyke families of Osceola when they realized they had children with childhood apraxia of speech.

How does it affect you?

“How does it not?” Audrey Wheeler said.

What is apraxia?

Apraxia is a motor speech disorder. Children with the disorder have problems saying sounds, syllables and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts needed for speech.

“I describe it best to people (that) their brain is not sending the message to their mouth. So, it’s up there. They know exactly what they want to say, but they cannot,” Nancy Van Dyke said. “The message gets scrambled somewhere in their wiring. It can’t come out until they teach them every little tiny part to words.”

Wheeler’s son Beau is 5 1/2 years old. He was 2 1/2 when he was diagnosed with apraxia.

Beau had no way of telling his parents what he wanted, and it affected his behavior and caused tantrums.

The Wheelers knew they had to put their son into speech therapy. Financially, it is a huge burden on them because insurance doesn’t cover speech therapy. The expenses are out of pocket.

Van Dyke’s daughter Megan is almost 5 1/2. She was 2 1/2 when the family suspected a diagnosis of apraxia and has been in early speech therapy.

Since apraxia is technically a neurological motor disorder, the first thing a parent notices is a speech problem. In Van Dyke’s case, by the age of 2, Megan knew only 10 words.

Wheeler also has another child who has speech delays and has been in speech therapy for a year. Van Dyke has a younger child who has a normal progression of speech.

Getting help

When Beau was first diagnosed, the Wheelers took him to speech twice a week and participated in sign language and music classes. This meant trips to Des Moines twice a week.

In the early years, everything was a guessing game as to what Beau wanted.

“It was a lot of self-doubt of am I doing enough? Am I getting him the services that he needs? Is he ever going to talk? What does our future hold?” Wheeler said. “It was learning to accept we have a kid who’s different.”

Van Dyke travels to Des Moines twice a week as well. Megan also has to see an occupational therapist because her apraxia affects her other motor skills such as handwriting and dressing.

To “resolve” apraxia, a child must start therapy early to become a functioning adult within society in the future.

“Outcomes really depend on intervention,” Wheeler said. “The earlier, the more frequent and the more intense that you get the intervention, the more successful your kid’s going to be, which is why I really attribute Meg and Beau’s success to exactly what services we’ve been seeking.”

Patience is key

When it comes to progression, parents have to be patient because success in therapy comes in spurts. There is sometimes an “explosion” of skill development that happens suddenly and facilitates change. There are also stagnant periods.

Apraxia is known to affect approximately one in 1,000 children. Even though the Wheeler and Van Dyke families have a hard road to travel, they said it’s comforting to know there is someone else who can fully relate to the struggles – for both child and parent.

“Until you’ve been there, it’s really difficult to understand how much it affects your life and how it affects your children’s lives,” Wheeler said. “People don’t mean to, but they can say some really insensitive things trying to reassure you it’s going to be OK.”

Early intervention

If a parent is seeing speech developmental issues in their young children, Van Dyke said to contact the “Early Access” through the local Green Hills AEA. They will do the appropriate evaluations and get the help to find the resources needed for early intervention.

Wheeler and Van Dyke have chosen to go public with their children’s diagnoses, as the more people who know about apraxia, the more understanding there is for those affected.

“If you have a child and in your gut you feel like something is not right with their development, don’t delay. Don’t let people tell you ‘it’s fine; they’ll grow out of it,’” Van Dyke said. “Early intervention is key. I can’t stress this enough. Beau and Megan would not be where they are today without early intervention.”