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Institute helps children communicate by Dick Peterson Public Relations Questions can haunt a new parent. Questions like, Is my child developing as he should? Why won’t he eat? Shouldn’t he be saying more words by now?   For Penlan Griffiths’ mom, Elizabeth, it was the pediatrician who was asking.   “He asked if I thought Penlan was talking like a 2-year-old. I didn’t know. I’d never had a 2-year-old before,” she said.   Penlan, who is now 3, had five or 10 words that he used regularly. With little to go on, the doctor ordered hearing tests which turned out negative. He could hear well. From there, John and Elizabeth Griffiths took Penlan to MUSC’s Evelyn Trammell Institute for Voice and Swallowing where his receptive language abilities were found to be sharp for a 2 and a half-year-old, but his expressive language was a year behind.   They found he showed some characteristics of developmental apraxia of speech. Trammel Institute’s speech-language pathologist Elizabeth Stokes describes developmental apraxia of speech as a motor planning disorder. To speak, a sequence of complex motor movements must be performed; it’s a sequence most people never give a moment’s thought to. But for Penlan it’s a monumental task. He knows what he wants to say, but the signal of motor sequences does not get from his brain to his mouth correctly, so his speech comes out unclear.   Stokes said that children from birth to school age come to the institute with various speech and language difficulties. Some have articulation problems while others have difficulty forming sentences or understanding questions and directions.   Watching Penlan in a therapy session with Stokes, it was easy to see him shift from giving it a try, to turning his attention away from the task, to refusing to cooperate. Stokes uses rewards, praise and time-out or perhaps a temporary separation from his favorite stuffed toy to coax him through naming a series of colors, some of which come easily, like red, and others that don’t, like yellow.   Sometimes the questions worried parents ask are justified, Stokes said. She has learned to watch for the subtle things—eye contact, how the children play with others and how they interact with adults. “Some children come here with food aversions,” she said, explaining that they may refuse foods of various textures. “It’s not as if they just don’t like broccoli,” she said. “It’s an aversion to a whole class of foods.”   Swallowing is another concern. A congenital defect or an injury can cause the sequenced muscle action in the swallowing process to malfunction and allow food or liquid to spill into the lungs.   At 4 months old Owen Wieters had a seizure that his mom, Mottie Wieters, hoped was an isolated incident. But it happened again about a month later. Then began a series of medications to see what worked, special diets to slow the frequency of seizures, and tests to determine the cause of those 30-minute ordeals where Owen’s little body would stiffen and begin jerking uncontrollably.   The diagnosis? Dravet’s syndrome, a degenerative seizure disorder. Unfortunately, a diagnosis is hardly a cure, and while medications and special diets have lessened the frequency of the seizures, Owen, who is now 4 years old, no longer communicates as he once did.   “Between January 2004 and the following August, Owen went from a 75-word vocabulary to silence,” Wieters said. “So we try to keep him bombarded with therapies.” She said that therapies include occupational, physical, speech and music therapies, feeding skills, therapeutic horseback riding, aquatic therapy and applied behavior analysis.     Owen shares a bedroom with his 13-year-old brother, Ron, whose job it is to alert their parents whenever Owen has a seizure.    In a communication therapy session with speech-language pathology therapist Diane Andrews, Owen was repeatedly given choices of favorite toys to play with. He’d pick and get to play with Andrews and a student therapist until another toy was presented.   “We’re trying to improve Owen’s language skills,” Andrews said, “his ability to be understood and communicate even if he can’t speak.” She said that communication for Owen may be limited to pointing, gesturing of selecting a picture.   Andrews and Stokes are trying to reconnect a bridge that Owen lost when that series of seizures destroyed the vocabulary he had built from birth. “If we can reconnect a modality for communication, we just may be able to jumpstart a means for talking,” Andrews said.   “I’d like to see him able to bring words back, even if it’s button-pushing or some voice-assisted technology to just let him communicate with us,” his mom said. She recounted the ordeal of trying to understand what he wants and seeing his frustration at not being understood. She added that therapy has been making significant gains for Owen.     Friday, July 29, 2005 Catalyst Online is published weekly, updated as needed and improved from time to time by the MUSC Office of Public Relations for the faculty, employees and students of the Medical University of South Carolina. Catalyst Online editor, Kim Draughn, can be reached at 792-4107 or by email, catalyst@musc.edu. Editorial copy can be submitted to Catalyst Online and to The Catalyst in print by fax, 792-6723, or by email to petersnd@musc.edu or catalyst@musc.edu. To place an ad in The Catalyst hardcopy, call Community Press at 849-1778.