Despite his severe speech disorder, Drew Grey, 6, of Frankfort is happily communicating.
It's all due to a speech-generating augmentative and alternative communication (AAC) device and speech therapy from the Rehabilitation Institute of Chicago (RIC) at Silver Cross Hospital in Joliet.
“Having the device to use along with gestures and sign language has cut down his frustration,” said Toni Grey, Drew’s mother. “He’s an extremely intelligent little boy, so it’s heartbreaking for a parent when we can’t figure out what he wants to say. Now, if he can’t say what he needs, he can find a picture of it.”
Drew was 3 when his speech therapist diagnosed childhood apraxia of speech. This is a motor speech disorder causing difficulty planning and executing the precise movements of the lips, tongue, and jaw for intelligible speech.
Because Drew’s device is a Windows-based computer, new programs are easily added.
Drew's speech pathologist is also part of a team of speech pathologists specially trained to evaluate patients that might qualify for such devices. Silver Cross is the only Will County facility that provides that service.
However, it’s not just the device that is making the difference. Drew’s family is a vital force behind the progress he’s making.
“I don’t know where he’d be without such a wonderful support system,” said Christen Both, Drew’s speech language pathologist.
Although Toni and her husband Ken Grey both had older children before they adopted Drew, they were unprepared for Drew’s extensive health problems: enlarged heart, underdeveloped lungs and inflated water weight from the birth mother’s gestational diabetes.
“He was in Children’s Memorial on a ventilator for the first 15 days of his life,” Toni said. “He was a very sick little boy.”
During Drew’s first three years, therapists came to his home for speech, physical, feeding and nutrition therapy. Because of severe reflux, Drew had a feeding tube, which doctors removed just last year.
“If Early Intervention had not come to us, I’m not so sure Drew could have had those services,” Toni said. “He only had a 10-minute window between the last feeding and the next one where you could actually move him around and get anything done. He couldn’t lie down without throwing up.”
When Drew was slow to talk, Toni decided he was either naturally quiet or “just a boy.” But as Drew’s speech difficulties persisted, Toni learned that speech problems are common in children that had feeding tubes.
“Drew takes everything in and can cognitively understand everything you say to him,” Toni said. “He just can’t get the words out.”
Both is currently helping Drew with sentence formation through a color-coded part in his device that assists him with constructing grammatically correct sentences. Also, when Drew pushes a word, the auditory model helps him repeat the word correctly.
Drew's apraxia is permanent, although it’s impossible to determine how far he may progress. Some days, his speech is fairly clear; on days Drew regresses, he relies more on the device. He also uses gestures and sign language.
“As long as Drew keeps working on his expressive skills,” Both said, “he won’t have any limitation with interacting with the general population.”
Drew’s health issues have not affected his natural compassion for others and generous spirit, his mother said.
For instance, he will dash from the school bus to the house to bring back fruit snacks for another classmate to enjoy on the ride home. His parents relish every moment.
“My husband and I enjoy each milestone Drew reaches because everything has been an effort,” Toni said, “and because Drew does everything with a smile.”