Newspaper article Pittsburgh Post-Gazette (Pittsburgh, PA)

At a Loss for Words a Family Relates the Challenges of Dealing with Childhood Apraxia

Newspaper article Pittsburgh Post-Gazette (Pittsburgh, PA)

At a Loss for Words a Family Relates the Challenges of Dealing with Childhood Apraxia

Article excerpt

Kathy Hennessy thought she would always have to use American Sign Language to communicate with her two children.

When her son, Andy, was a toddler, she was told he would never speak, and doctors were not sure what quality of speech her daughter, Kate, would have. Both had been diagnosed with different severities of childhood apraxia of speech or CAS.

Stepping up efforts to communicate by learning 10 signs a day, Mrs. Hennessey and her family, of Mt. Lebanon, became fluent in ASL. They had to rely on talking to each other with hand gestures because speech was not an option at the time for Kate and Andy.

Affecting about one to two children in every 1,000, CAS is a motor disorder that causes children to have difficulties saying sounds, syllables and words. There is no cure for the disorder, and speech therapy differs for each child.

Even though Kate, now 23, and Andy, now 21, were both diagnosed, there is no definite answer as to whether CAS is genetic. However, Philadelphia speech pathologist Sue Caspari, who researches the disorder, said there are a small percentage of diagnoses coming from the FOXP2 gene. Abnormalities in the gene appear to increase the risk of speech and language disorders.

"We don't have great research to help us understand which child would be diagnosed," said Ms. Caspari, who spends a lot of her time trying to educate herself to be more accurate in diagnosis and treatment. "There is not a lot of good research to guide us. We think it may be overdiagnosed."

The possibility of the motor disorder being genetic is something Kate said that she will certainly think about when planning her future.

"It is something to think about for the future to pass that along, and there is a lot to learn," she said.

At the time of Kate and Andy's diagnosis, the American Speech- Language-Hearing Association lacked an official policy on CAS. It wasn't until March 2007 that the ASHA developed one.

So, for the Hennessey family, they grew side-by-side with the development of the public's understanding of CAS, Kathy Hennessy said.

"We fostered each other, so that has been kind of fun to watch," she said. …

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