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Jake Arnett
Jake Arnett In their earliest years, children spend a lot of time trying to get others to understand them when they talk. The task requires extra effort for five-year-old Jake Arnett of Guthrie, Oklahoma. Jake was diagnosed with Angelman Syndrome as an infant. His sense of humor and the support of a loving family help him to cope cheerfully with the rare genetic disorder that affects an estimated 1,000 to 5,000 individuals in the United States and Canada.

Manifestations of the condition include developmental delays, balance problems and a short attention span. People with Angelman Syndrome tend to have excitable yet pleasant personalities. They laugh and smile frequently, but usually have significant speech impairments. At an age when children typically start to talk in sentences, Jake discovered that people understood him best when he gestured or grunted.

"You can tell he's trying to say something," says Jake's mother, Dyann Arnett. "He'll make noises. He just can't articulate them."

But Jake is making progress in self-expression, thanks to the addition of technology to the tools that help him communicate. He got a Dynamo in July 2002 after the paper overlays on his first digitized speech device proved difficult to handle. In just a few months, Jake learned the advantage of having a way to say what he means, quickly and clearly.

"He finally realizes that he can have some power over his environment if he can communicate what he wants," his mother says.

Jake is polishing his ability to use the Dynamo for simple requests such as "I want to go outside" or "I want a cookie" and learning how to link communication buttons as his vocabulary grows. Hearing the voice of his seven-year-old brother Josh, who records the speech-output for the device, is a real motivator for him. Jake often attempts to mimic Josh's voice.

Jake's initial infatuation with the Dynamo made him want to use it all day long. He chatted so much when he first got the device that the battery had to be charged daily. Though Jake is learning to use the device more prudently, he still grabs it from the kitchen counter first thing every morning, his mother says. She's working with Jake, who accesses his Dynamo via direct selection, on using it to voice his needs during his morning and bedtime routines.

Jake's favorite activities include riding his large tricycle with hand and foot pedals that move in sync. The motion resembles walking and is helping Jake to avoid holding his arms at his shoulders (or higher) when he walks, a common tendency for those with Angelman Syndrome. Jake also enjoys riding horses, swimming and playing with Bryn, his German shepherd as Josh plays with Pal, his yellow lab retriever.

Dyann Arnett home-schools her sons. Their schedule allows time for the weekly occupational, physical and speech therapy sessions that Jake receives through the local school district. Jake is doing very well, his mother says, partly due to the support of his brother, who accompanies them to the sessions. Josh helps the therapists to understand Jake's vocalizations and gestures.

Jake and Josh go for spur-of-the-moment outings at Coffee Creek Riding Center, a recreation program for children with special needs. The Arnetts are on a wait list, so the center calls them to take the place of those who cancel scheduled horseback riding sessions. Between rides, the children play ring toss or beanbag games that help to increase their fine motor skills.

A sociable child, Jake enjoys meeting and greeting people when he goes to church with his family or to Josh's baseball games. He has a pool of admirers at the Scottish Rite Language Clinic, where his playfulness shines.

At the beginning of his sessions with speech-language pathologist Monica McGuire, Jake takes Monica's hand and puts it on the "on" button of the Dynamo, which has been instrumental in teaching him to make choices and realize the consequences. Monica will ask him to choose a toy, for example, then have him respond by selecting one of a set of symbols for toys shown on the device.

When Jake cannot decide which toy he wants or simply presses the wrong button, he learns that you risk doing without things you want unless you let others know what's on your mind.

What Jake wants on most visits to the clinic is to hear the echo of his laughter in the vestibule. The staff enjoys it, too.

"He's a funny little guy. He gets so tickled by things," Monica says. " If we're playing with a ball on the table and the ball rolls off the table, he just kills himself laughing. He's always smiling."
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