When it comes to using augmentative and alternative communication (AAC), Sa'ar Shacham is as polished as he is willing to try new ways of expressing himself more fully.
Sometimes his method of choice is simple, like bringing his mother Gesia and father Chaim their coats and bags to say it is time for one of their weekend visits to the home Sa'ar shares with other men with disabilities to end. Or hugging his sister, Orly, when she travels a few hours from New York City to see him. Sa'ar sometimes waves his arms at the bulletin board of family photos in his bedroom, a gesture indicating that he equates family with happiness.
Equally comfortable with the DynaVox speech communication devices he has used for 15 years including his new V, Sa'ar, 23, is, on his own terms and despite challenges associated with being non-verbal and autistic, living out another important equation – self-expression + self-sufficiency = empowerment. At the rural Mullica Hill, New Jersey campus of the residential programs that the non-profit Bancroft NeuroHealth runs throughout the state, Sa'ar is poised him to take his voice and his personal freedom to new levels. Two constants made it possible for him to reach this point: constant support at home while growing up and AAC technology that has grown with him. The latter, Gesia Sacham said, provides more than the ability to speak – it gives him a life.
With each new achievement and every meaningful communication experience that Sa'ar can call his own, her pride overflows. Accentuating her joy is the recognition that his success is a journey, taking root in bits and pieces over time. In its earliest phase, Gesia created a book of Picture Communication Symbols to introduce four-year-old Sa'ar to a world of language. She kept filling it, color-coded parts of speech and categorizing pages to ensure his mastery of expressing basic needs, wants and feelings. Sa'ar's vocabulary thrived through his use of the book (dubbed a "genius book" by his mother) and set in motion the next stage of the journey, his acquisition of one of the original DynaVox devices and later, a DynaMyte 3100. Their dynamic displays matched the keen visual perception and photographic memory that Gesia identifies as his strengths.
"I think that's one of the reasons the devices have worked well for him," said his mother, who identifies herself as chief programmer of the devices and appreciates the possibilities for seamless communication that Sa'ar's 30-button pages offer. "They are linked and linked and linked."
Gesia imported his DynaMyte 3100 pages to the V, supporting his intuitive use of the new device. His "Mullica Hill" page, for instance, links to an equestrian page he uses to describe his steady job feeding, brushing and grooming horses. He leads them by their harness as others ride them and mops the stalls. Another page in the set lets him discuss his responsibility to feed other animals on site including chinchilla, a guinea pig and parrot.
"He knows that device inside and out in terms of navigation," said Debi McKenzie, M.A., CCC-SLP, the speech-language with Eastern Rehabilitation Associates whose weekly visits with Sa'ar focus on expanding his independent use of the V across environments.
McKenzie wants to help Sa'ar move beyond saying what he needs to say about everyday activities to routinely making social conversation, a goal requiring substitution of abstract concepts such as feelings with concrete language that tends to make more sense to people with autism. Sa'ar may, for instance, ask, "How was your weekend?" then immediately follow with the more specific questions "Did you go to a movie?" or "Did you go bowling?"
This new direction in Sa'ar's journey eases Gesia's concerns about his interaction with housemates.
"When they're sitting in the living room and watching TV, I wonder if he's thinking, ‘Why can't I say something?'"
Yet Sa'ar understands that self-expression surpasses words. His versatile communication toolkit includes favorite music (movie soundtracks and 1950s pop songs) and favorite photos of family and friends that Gesia imported to the V for fun. Through his eye contact, gentle nudges, and the old communication book that complement his use of the V, Sa'ar's companions get the message that he's serious about talking.
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