WellesleyWeston Magazine

WINTER 2016-2017

Launched in 2005, WellesleyWeston Magazine is a quarterly publication tailored to Wellesley and Weston residents and edited to enrich the experience of living in two of Massachusetts' most desirable communities.

Issue link: https://wellesleywestonmagazine.epubxp.com/i/745407

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Page 171 of 211

with his dad, Billy now uses a Panasonic Toughbook® loaded with Speaking Dynamically Pro—interactive software that turns a com- puter into a speech output device. The rugged tablet, built for police and emergency use, is sturdy, well-suited for the physically active young man who carries it everywhere on a heavy duty strap around his neck. If the first Toughbook fails, he has a second tablet as backup. At other times, he uses low-tech printouts. These options give him a voice. In March 2014, the Centers for Disease Control and Prevention (CDC) released a study indicating approximately 1 in 68 children had ASD. But according to Eve Megargel, when Billy was diagnosed in 1992, it affected one in 10,000. About 25 percent are nonverbal. "If I talked about it in 1992, nobody knew what I was talking about," she said. "The cultural reference point was probably [the 1988 movie] Rain Man, the skewed, savant understanding of what autism was as a disorder. Most of these individuals were not in schools or out in the communities. They were usually in institutions of some sort." Billy's home school is a sunny, well-appointed barn with studio space that any student of art and music would envy. There is a fitness area complete with a trampoline. For weekly yoga classes, pictures attached to boards with Velcro® hang on the walls so Billy can ask about correct posture and receive guidance. Music classes and jam ses- sions also use modified sheet music so he can follow a score, beating rhythms on drums or rippling tunes on an African xylophone. He uses cards to compose his own music while also learning classical notation. Everything is impressively stocked and well-organized. At the barn's rear is Billy's art gallery with high-tech lighting and white walls that recall those on Newbury Street. Dozens of his com- pleted canvases are displayed. Hundreds more are stored by size on open shelving. A few are his interpretations of works by the masters. "Billy is all about expressing himself," said Megargel with evident pride. "As an artist, he works in the moment, in the zone. His ability to use paints and tools is organic. He expects to paint every day." A petite woman with a mix of energetic, no-nonsense and bohemian vibe, she contends that what many people call 'behaviors' are actually commu- nication break-downs that those with autism experience. As a young child, Billy was robust, said his mother. "Nobody could have predicted he would have critical health issues for five years. It could have been much worse but because he had a communication system and partners who knew how to use it, he was able to get into an ambulance multiple times, to go under anesthesia multiple times, and tell us what he was going through and heal multiple times." Everyone wants to connect, said Megargel who emphasized that her son has great strengths and significant deficits, but he is not excep- tional. He is too vulnerable to be alone. Her stated goals now are to expand his community of peers and help him be as independent as possible. Out of their shared experiences, she created Voice Colors®, a communication resource model that since 2012 she has taught locally and shares with audiences of healthcare providers and parents of 170 W e l l e s l e y W e s t o n M a g a z i n e | w i n t e r 2 0 1 6 / 2 0 1 7 books "so much courage and compassion"

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