Messages from Miah
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Miah is currently using about eight enhanced natural gestures regularly at school and a few more at home. To indicate that he wants to play ball, he holds his hands in front of him and moves them up and down together, as if bouncing a ball. Bringing his fingers to his mouth signals, "I'm hungry." He can even use gestures to give directions to his dog, a golden retriever named Ward. When Miah brings his palm up to touch his chest, Ward recognizes the sign for "come" and happily complies.

Miah with personal trainer Matt Frye '02
Miah exercises at The Works in Somersworth with coaching from Matt Frye '02 of UNH's Northeast Passage program. "The exercise is important, but it's almost secondary to the opportunity to get Miah out in the community,": Frye remarks.

Learning to communicate with gestures has helped Miah to become more expressive generally. He never used to be able to ask for things without actually touching them. If he wanted to take a bath--like most children with Angelman syndrome, he loves water--he would turn on the tap in the tub. If he wanted cereal, he would go to the cupboard and get it. But using enhanced natural gestures has helped him to realize that he can ask other people for things that he can't get on his own. "It opened him up to realizing that communication gives him some power," his mother says. "Communication can make things happen."

Calculator's work with enhanced natural gestures has demonstrated that it is possible, with a lot of time and persistence, to give a child with Angelman syndrome the ability to communicate in a limited way. Persuading the child to use that ability is another battle.

"One of the issues with individuals with Angelman syndrome is their motivation," says Lisa Payeur '92G, special education coordinator at Somersworth High School, who has worked with Miah for the past three years. "Sometimes Miah will get his sports bottle out to get a drink of water, and he won't be able to open the flip top. We wait for him to ask for help, but instead he'll just put the bottle down, like he's saying, 'Forget it. I don't want a drink after all.'"

Miah generally isn't motivated to respond to other people if he's not interested in what they're saying, even if he understands them perfectly well. "He pays attention to what he wants to," his mother says. "I can say, 'Hey, Miah, let's go work out on the treadmill,' and he'll just blow me off. But if I say, 'Let's go to Burger King,' he'll be standing at the door with his coat."

Miah at gym

The key to getting Miah to communicate is to put him in situations that are interesting and fun and let him interact with other people. The high school has attempted to do that by assigning him to activity-oriented classes, such as band, physical education and a marketing class that runs the school store, where Miah stocks the soft drink coolers. He also spends part of each school day in the special education resource room, where he gets individual instruction in communication and life skills.

Twice a week Miah leaves phys-ed class early to go to The Works, a health club in Somersworth. There he meets therapeutic recreation specialist Matt Frye '02, who works for Northeast Passage, a service program of the UNH Department of Recreation Management and Policy. Frye is a kind of personal trainer for Miah, helping him with exercises that will increase his stamina, balance and flexibility. "We're trying to develop some skills that will enable him to participate more fully in phys-ed class," Frye explains. "The exercise is important, but it's almost secondary to the opportunity to get Miah out in the community so people can get to know him. He's a very social young man; he wants to make friends and interact with people around him."

Miah's parents also try to get him out in the community as much as possible. He belongs to several teen social groups and goes to summer camp, swimming classes, weekly church services, and concerts and athletic events at UNH. He rides a tandem bicycle around Somersworth with Chris, and Alicia involves him in activities with her friends. It takes time and energy, but Miah's family is determined to keep him connected with the community around him. "You see so many adults with developmental disabilities out in the community, and you realize that the only people in their lives as they get older are people who are paid to be there. That's scary; that's a killer," Karen says.

When Miah was still in grade school, Karen and Chris outlined a set of goals they want him to achieve by the time he is 21, when he will no longer be eligible for assistance through the school system. They want him to have a circle of friends he can rely on, a home where he feels secure, a job that he enjoys doing, a role in planning his own future. Twenty-one is only five years away now, and some of those goals still seem far off, but Miah keeps making progress, and his family won't let anyone give up on him.

"We don't really know what it's possible for him to do, but we're not going to underestimate him," his mother says. "I decided when he was little that I'm not going to assume he can't do things; I'm going to assume he can." ~

Jake Chapline is a freelance writer and editor and a frequent contributor to UNH Magazine.

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