Skylar Hopkins has come to terms with the hereditary neuromuscular disease that’s taken over her life.
Two years ago when she was 10, torsion dystonia caused her right hand to close up. So she became a lefty.
A member of Old Town’s Leonard Middle School band, she no longer had the range of motion to play the clarinet. So she took up the baritone horn.
Now that the disorder has left her feet twisted she’s had to forgo her beloved soccer. Each morning she puts on her leg braces and does her smiling best to keep up with the other children.
But something she’s never grown used to is being the only one with a disability.
“When people stare, you think it’s only you. But now I know other people have things wrong, too,” the resilient young girl said last week, grinning broadly as she made her way across the waterfront at Pine Tree Camp for Handicapped Children and Adults in Rome.
Providing the opportunity for people with disabilities to be with others like themselves and do things they don’t regularly get to do is what Pine Tree Camp is all about, according to director Peter Phair.
Now, that mission has broadened.
Rebuilding a cabin that was destroyed by fire last summer, the Pine Tree Society board voted to change it from a summer place into a multiseason venue for people with disabilities who want to experience a wide range of recreational activities.
Under construction and due to open in October, the building will be insulated and winterized, with its own well and septic system.
While plans haven’t been completed, the idea is to use Pine Tree as a base for pastimes such as fall foliage tours, hunting, hiking, canoeing and kayaking trips, ice fishing and ice hockey, cross-country skiing, snowmobiling and even a ropes course.
“The sky’s the limit,” Phair said. “We want to provide new and different things for people, and we want them to define what those things are. They’ll tell us what they want and we’ll make it happen.
“If there’s a market to climb Katahdin, to go deep-sea fishing, to participate in team sports or spend the week in the woods, we’ll try to pull it all together,” he said.
While Phair expects people who already attend Pine Tree will jump on the bandwagon, he also is seeking new populations – maybe from schools or group homes – as well as staff and volunteers.
Excited by the prospect of enabling people with disabilities to give free rein to their adventurous spirit, Phair nevertheless knows the unique program calls for baby steps.
“There’s been for a number of years the push to try to offer these kinds of activities and experiences for folks, but part of the process is educating people that they’re available and having the venues and equipment and volunteers to pull everything together,” said Phair, who is not going it alone.
The director is collaborating with Maine Adaptive Sports and Recreation in Bangor and with Alpha One in Brewer, organizations that help people with disabilities participate in sports and live independently.
For her part, Skylar Hopkins is looking for nothing more than to meet other children who know what she’s all about.
“When she’s at camp, everybody’s equal because they all have the same problems and struggles,” said her mother, Cynthia Gaudet, who isn’t fooled by the grit and determination her daughter displays.
“She still has insecurities and questions,” said Gaudet, “but it’s easier for her to talk to the girls at camp because they understand. If she has little physical things that happen to her and others have the same thing, they talk it out. She’s made a whole list of different things she does to calm her muscles down – she’s figured it out.”
Home to around 500 campers each summer, Pine Tree is on the shores of North Pond, one of the Belgrade Lakes.
The area comprises a picturesque medley of neat cabins, grassy expanses and pine-scented woods marked by handicapped-accessible nature trails.
Sounds of children laughing ring out everywhere. Here they know they won’t be judged or looked at askance. Here they feel safe, heady with the knowledge that, for once, they blend in with the crowd.
Let her have a chance to be like other children her age, Vicki Moore of East Madison said to herself when she decided to send her 11-year-old daughter, Samantha, to camp this year for the first time.
Sure enough, there was Samantha the morning after she camped out under the stars with the rest of her cabin mates. Sitting in her wheelchair, the dark-haired girl was happily reminiscing about the breakfast counselor Stephen White made over the campfire for the hungry tenters.
“Chocolate chip pancakes! Delicious!” said Samantha, who has cerebral palsy.
Supervising physically handicapped children was new for him, said White, 27, taking a break from his role as chef.
“I never had to change a diaper or spend 15 or 20 minutes supporting someone’s back so he can put on his shirt or take 45 minutes getting someone out of bed and into a wheelchair with fresh clothes,” said White, who traveled from Cape Town, South Africa, for the experience.
“But it’s not me being patient – you realize what they have to go through – they’re the ones who have patience,” said the young man, one of 60 paid staff.
Later, joking around in the dining hall after lunch, Nick Barter, 20, of Pittsfield pronounced his job as counselor “the greatest – so awesome.”
“There’s nothing in the world like this,” he said. “Some things are weird at first, but you get into it. Now there’s nothing to it.
“I love working with anybody where you think you can make a difference,” Barter said.
Staff members at Pine Tree are a special breed, said counselor supervisor Linda Bonnar of Topsham.
“This isn’t for the counselor who wants to kick back,” said Bonnar, 37, a speech therapist who has spent 16 summers at the camp.
“You’re going all the time,” said Bonnar, pointing out that people with muscular dystrophy must be turned in bed every two hours. And some campers without the use of their hands will need to be fed.
Counselors participate in a weeklong training period where they learn carrying and lifting techniques and come to understand how to deal with toilet issues, according to Bonnar.
“You can talk the talk during training, but it doesn’t make sense until the first camper comes down the hill,” she said.
Some people decide it’s not for them. But those who stay become better and stronger.
“This will change their life, they’ll gain experience that will serve them well in the outside world,” Bonnar said.
“You learn that your own problems aren’t very important, you learn to live one day at a time and to put 150 percent into every task you undertake,” said Bonnar, who recalled her first summer at Pine Tree.
“I had just come out of college and thought I knew the world,” she said. “But you come here and you realize you don’t know very much after all.”
For more information, call Pine Tree Camp, 397-2141.
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