If you talk to 3-year-old Maverick Reed, it's likely you won't notice anything out of the ordinary. He has some trouble pronouncing his L's, and K's and G's come out with difficulty. And maybe R's and V's.
But many 3-year-olds can't pronounce those letters, anyway.
For Maverick, though, the problem is not completely developmental.
Around age 2, Maverick was diagnosed with childhood apraxia of speech, a neurological disorder.
"He can make the movements that are necessary for speech and make the sounds, but his brain has trouble communicating to his mouth how to coordinate those movements," said Casey Reed, Maverick's mother.
According to the Childhood Apraxia of Speech Association of North America, a national nonprofit organization dedicated to children with apraxia of speech and their families, research is lacking when it comes to the prevalence of the disorder. But according to the association, some sources indicate that the disorder affects 1-10 in 1,000 children, or about 3 percent to 5 percent of speech-impaired preschoolers.
Reed and her husband, Ben Reed, didn't immediately realize that something was wrong with their son. Up until age 1, Maverick was babbling, like most other children.
"Looking back, (it was) not as much as other babies," Casey said. But it was enough to keep them from worrying. Then, shortly after he turned 1, he stopped making any sounds.
When Maverick was almost 2 and still nonverbal, his parents took him to get evaluated through SoonerStart, Oklahoma's early intervention program designed to meet the needs of infants and toddlers with disabilities and developmental delays.
After three months of speech therapy that led to Maverick being able to say nothing except "uh oh," his therapist told Casey and Ben that their son might have apraxia of speech.
Up until that point, Casey said they weren't too worried because they knew that some children were late to speak.
"But apraxia is a really scary diagnosis," she said. In some severe cases of the disorder, individuals may never be able to speak correctly and have to resort to communicating through sign language or pictures.
Cause and treatment
Casey calls the disorder "bizarre."
"They don't know what causes it," she said. "There's not a cure or a set treatment. It's just a lot of repetition."
Maverick started out attending speech therapy sessions four times a week. His therapists tried numerous methods of trying to make him pronounce different sounds. Techniques included everything from placing candy at the roof of his mouth to try to make his tongue reach certain spots, to recommending physical cues to remind him how to shape his lips for certain letters.
(Tulsa, OK) Maverick also practiced at home. His family would stand him in front of the mirror so he could watch himself form letters. Other techniques practiced at home included flashcards with "articulation trees" to help him gradually pronounce words correctly.
The intensive therapy and home practice has made a difference for Maverick, who is now on an individualized education plan at Patrick Henry Elementary's 3-year-old program.
His parents, who originally expected Maverick would have to attend speech therapy sessions till at least mid-elementary, think that now he may not need the sessions past kindergarten. Casey said she expects him to be on par with other students once he enters a mainstream preschool classroom next year.
But Maverick's parents say this does not mean the disorder won't continue to affect their son. He will likely never find it easy to be a public speaker, and as he moves through school, he may whisper answers to himself before saying them out loud in class.
"It is something he will have to work on his entire life," Ben said.
Research and awareness
Doctors haven't been able to tell Casey and Ben if Maverick's apraxia is somehow connected to a condition he had earlier, called torticollis, characterized by stiff neck muscles. When Maverick was an infant, the torticollis kept him from repositioning his head while sleeping on his back. This led to plagiocephaly, meaning that the back of his head became flat. A special helmet corrected the condition.
"No one could really tell us if they're connected," Casey said of the torticollis and the apraxia.
But that's because there is still a lot that doctors don't know about childhood apraxia of speech, Ben said.
In trying to find ways to help their son, such as figuring out that removing gluten from his diet helped increase his vocabulary, Ben said a lot of the information came from other parents.
"There was no website that told us about it, there were no doctors' recommendations," he said of their realization that Maverick could be gluten-intolerant. "It was parents in forums that kind of discussed what worked for their children, what didn't work for their children.
"Casey has a notebook that's probably 4 1/2 inches thick of printouts from just parents about what worked for them, what didn't work. We kind of tried everything under the sun and kind of settled in to where we are now," Ben said.
Maverick is currently on a gluten-free, nearly dairy-free diet and takes multivitamins, fish oil and other nutrients.
(Source: tulsaworld.com)
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