During the sweltering weather of July’s first week, about two dozen youngsters and their parents and caregivers gathered on the shores of North Pond in Rome. At Pine Tree Camp – Pine Tree Society’s program that offers camp programs for individuals with disabilities – non-verbal kids were immersed in five days of summer camp. Armed with their communication devices, these campers had the chance to learn and play in nature – and in community with others just like them.
Camp Communicate’s campers use technology – known as augmentative communication – to communicate. Camp Director Linda Bonnar, MA, CCC-SLP/ATP, is Director of Communication Pathways at Pine Tree Society. She says Camp Communicate is intended to empower kids.
“We have a deep passion for making sure that everybody has a right to communicate,” Bonnar says. The Camp Communicate staff – Communication Pathway’s five speech therapists, several college interns, and more than a dozen others – totaled about thirty in all. All were volunteers. And their program gave campers a broad range of activities – outdoor games, boating, swimming, music and drama. While campers participated in those programs, their parents and caregivers enjoyed “respite activities,” Bonnar says.
“Parents are 24/7 with their kiddos,” she says. The camp’s offerings mean a parent can say “my child is safe and with someone else and I can actually sit down for five minutes,” she says. Parent activities included painting, massages, and educational workshops. One such presentation, focused on school inclusion, brought University of Maine, Farmington faculty member Kate McLeod, Ph.D., to the camp.
Bonnar says all the campers’ activities “are geared toward using their devices.”
“They leave more savvy, more empowered to use it,” she says. A camp literacy activity included creating and publishing stories, and a movie night watching Mary Poppins included writing movie reviews.
A highlight of Camp Communicate “is the natural opportunity it gives them,” Bonnar says. “Everybody deserves the opportunity to go to camp.” Campers enrolled this year faced a variety of challenges, she says, including autism, Rett Syndrome, and cerebral palsy.
Camp Communicate charges tuition, but also offers camperships, Bonnar says. “We don’t want anyone to be turned away,” she says.
The 23 campers who attended this year’s camp were primarily Maine residents, Bonnar says, but families traveled from Massachusetts, Connecticut, Florida, even Wisconsin.
Some campers return year after year. Lisa Mcglone, of Limington, brought her son Teagan, 14, for his eighth summer.
“He likes the sense of belonging and fitting in, not being any different because he has a device,” Mcglone says. Teagan, who has Down Syndrome, has used a communication device since he was four, she says. “He’s got multiple modes of communication. The device has been great for solidifying communication.”
In addition to helping kids feel less isolated, the camp serves parents as well, Mcglone says. “It gives parents a sense of belonging to a group, a family,” she says. “We all have commonalities that help us relate. We can support each other and seek advice from each other.” According to Bonnar, this year’s Camp Communicate hosted more than 40 parents and caregivers
“This place is heaven on earth,” Mcglone says. “I could never imagine this not being part of our lives.”
Warren and Jeannie Sterkem brought their daughter Katherine, 21, from Wisconsin to attend Camp Communicate.
“We never had a communication camp,” Jeannie says. “This is a really special place.”
Katherine uses a variety of devices to communicate “her needs and feelings and wants and desires,” Jeannie says. She says that one challenge Katherine faces is the need to receive directions a single step at a time.
Camp staff has been “very sensitive to our needs,” Jeannie says. “You don’t worry if a child is having a difficult moment. It’s just sort of ‘it’ll all pass.’ Everyone understands.”
Jeannie says a highlight of the camp was the July 4th parade the staff organized, in which campers and staff marched and parents played the role of onlookers. “How many kids get to be in a parade?” she asked.
The Sterkems also say they appreciate the respite time camp offered. “It’s really important to take time for yourself,” Jeannie says. “If you don’t take care of the caregiver, you’re no good to anybody.”
A primary goal is helping Katherine communicate in the workplace, her parents say. She has three jobs: filing in an office; helping at a Hampton Inn; and a new job at an online marketing company. Employing someone with Katherine’s challenges takes “someone with a vision,” Jeannie says. Jobs often entail just cleaning; encouraging expansion of responsibilities can be hard, she says.
But the opportunities at Camp Communicate have been helpful, she says, particularly as Katherine learns to use her new eye-gaze technology device, which uses tracking of eye movements to control devices.
Katherine also benefited from the fact that Pine Tree Camp has temperature-controlled buildings, her father says. Indeed Dawn Willard-Robinson, Pine Tree Camp director, says campers’ needs often require such accommodations. When buildings were rehabilitated after a major fundraising campaign, temperature controls were installed, she says.
Like camper parents, such as Lisa Mcglone and the Sterkems, Camp Communicate staff members exude enthusiasm for the program. Shannon McFarland, another speech pathologist with Pine Tree Society, has served on the Camp Communicate team throughout its 14-year history.
“We love it,” she says. “Everybody eats it up. Everybody gets to be at camp and do what you do at camp.”
“What do they take with them?” asks Bonnar? “Some of them take friendships. We try to give them as much choice as we can here so they do feel empowered. They take advocacy with them.”
“There’s no ‘can’t,’” says Bonnar. “It’s just how can we?”