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.
In 2000, Kathy Hennessy was one of the founding board of directors of a new nonprofit group, based in Pittsburgh, that is focused on meeting the needs of children diagnosed with CAS.
"The Childhood Apraxia of Speech Association of North America is really a small nonprofit that has a worldwide presence," Ms. Hennessy said. "We are in touch with thousands of people daily through social media."
Through the book "Anything But Silent," the family's account of the challenges of dealing with CAS, Kathy Hennessy said she hopes people in the future won't have to go through what they did, feeling so alone.
"There were definitely times when I felt very much alone," she said. "I struggled to find hope that everything was going to turn out OK. Kate and I just figure that we can put our story out there and let people see that there is a light at the end of the tunnel, and there is not a train coming at you."
Now that they don't rely on ASL to communicate, the family members are no longer fluent and say they've forgotten most signs.
"My mom and I can be across the room and we will just use one sign for something," Kate said. "I do the 'who' a lot like, 'Who are you on the phone with?' "
Kate and Andy may now be able to speak, but they have not abandoned the CAS community.
"It is a second family," Kate said. "They are people who you don't have to explain what apraxia is to."
While Kate once distanced herself from the disorder to avoid being labeled as different, she now gives talks to families who are now dealing with CAS to give them hope that they can have lives not revolving around speech therapy. Kate works as a filmmaker in Las Vegas; Andy is now a student at Case Western Reserve University.
"The reason why I stayed with it is because I am very lucky, and Andy is as well, and both of us are very blessed to be where we are in our lives and have overcome this disorder," she said. "There are a lot of kids younger than us who are just starting out, so if we could be just two role models out of a couple hundred, then I think that is a great thing to do."health
Claire Aronson: firstname.lastname@example.org, 412-263-1964 or on Twitter @Claire_Aronson.