Messages from Miah
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Miah shopping with Lisa Payeur
Special education coordinator Lisa Payeur '92G encourages Miah to use a variety of communication tools, including pictures, enhanced natural gestures and a computer with a modified keyboard (below).

Although the various symptoms Angelman noted could be attributed to a variety of conditions, he theorized that all of them had a single cause. That suspicion was confirmed in the mid-1980s, when genetic researchers discovered that Angelman syndrome is linked to a particular gene labeled UBE3A. Most people who have the condition, including Miah Salter, are missing a snippet of genetic material that includes this critical gene. Other cases have been linked to other abnormalities in the chromosome where UBE3A is found.

Miah using a computer with Lisa Payeur

Angelman syndrome affects males, females and all racial or ethnic groups equally. Researchers estimate that 1,000 to 5,000 individuals in the U.S. and Canada have the disorder, although most have been improperly diagnosed with other developmental problems. Now that Angelman syndrome can be positively identified through a laboratory test, researchers are beginning to suspect that it is more common than they used to think. A few years ago, experts believed that it might affect one baby in 20,000; now they say one in 10,000 is probably more accurate.

When Miah was four years old and attending a preschool program in Somersworth, the school district enlisted Stephen Calculator, a professor of communication sciences and disorders at UNH, to help design an educational program for him. Calculator, who specializes in augmentative and alternative communication, has been involved in Miah's education ever since.

"Steve comes to the school at least once a year for consultation," Karen says. "He helps to train the school staff, showing them exactly how to support Miah and what to expect. He'll write up a whole procedure manual, explaining the goals, objectives and what we and the teachers need to do. Sometimes he's even come into the classroom to talk to the kids about Angelman syndrome. He's helped us to break down a lot of barriers."

His work with Miah and several other children with Angelman syndrome established Calculator as an expert, and he was swamped with requests for help from schools around the country. Over the past eight years, he has assisted in developing curricula for more than 50 children diagnosed with the condition.

Calculator has tried a number of communication techniques with these children with varying degrees of success. Many standard forms of augmentative and alternative communication just don't work for them, he says. American sign language is difficult for them to learn, and they don't have the fine motor skills required to make signs that are clear to others. Communication aids like picture boards, letter boards and devices that use recorded messages are cumbersome. Children like Miah require a simpler way to make themselves understood, a method that they will use consistently without prompting. Calculator has developed one for them: enhanced natural gestures.

"With enhanced natural gestures, you begin with gestures that the child already uses," Calculator explains. "For example, a child might be observed lifting a cup to her mouth with two hands. Her use of the same gesture in the absence of physical contact with the cup would constitute an enhanced natural gesture. Similarly, a child might be observed in music class beating a stick on a drum. Use of that same hand movement when the drum is in sight but out of proximity could be the child's enhanced natural gesture for requesting another turn with the drum."

Enhanced natural gestures are different for every child, but they have several essential characteristics in common: they are always used intentionally; they are based on gestures that the child can already make; they are consistent and can be readily understood by others; and they do not rely on actual physical contact with an object or a person.

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