A Home Away From Home: Finding The Right Camp For Those With Different Needs
By Wendy Greenberg
Princeton University freshman Jack Aiello credits a special New Jersey camp for giving him the confidence to climb the Himalayas with the challenges associated with type 1 diabetes.
Despite the unpredictable effect elevation can have on metabolism, his blood sugar numbers stayed under control. In a blog on the camp website he wrote, “Eight summers of living with peers and counselors who have diabetes have given me a tremendous amount of knowledge and confidence in managing diabetes…Camp gave me counselors who spent weeks camping in the wilderness, friends who cycled thousands of miles competitively, and dozens of role models and friends who always kept their diabetes under control—not the other way around.”
Now as a counselor at Camp Nejeda in Stillwater, he cultivates the same type of empowering community that supported him as a camper.
Nejeda is one of the many camps for youths with special medical issues or disabilities that are available to families who decide that camp is the best way to spend time during the summer.
Camp Nejeda, celebrating its 60th anniversary next year, is among the camps in the tri-state area that support a growing population who might benefit from a camp that is focused on their needs. While there is no “official” list of camps for campers with special issues, there is information for parents from medical and advocacy organizations, and, of course, an internet replete with information.
GOOD NEWS : MANY OPTIONS
A spokesperson from the American Camp Association (ACA), New York and New Jersey chapter, says the right camp probably exists for the family who is willing to explore the options. “If a family is interested in sending their child with special needs to camp, the good news is there are many options, both private and nonprofit,” says Renee Flax, a camper placement specialist.
The ACA is a nonprofit organization dedicated to preserving, promoting, and enhancing the quality of the summer camp experience. It is the only independent accrediting organization reviewing camp operations in the country, based on the health, safety, and risk management aspects of a camp’s operation, and collaborates with experts from the American Academy of Pediatrics, the American Red Cross, and other youth-serving agencies to assure that current practices at the camp reflect the most up-to-date, research-based standards in camp operation.
“There are both day and overnight camps for children and adults with varying special needs including mild, moderate, or severe disabilities,” says Flax. “There are special needs camps for children beginning as toddlers through adulthood for children with developmental and intellectual disabilities, diabetes, cancer, Asperger’s syndrome, and many other special needs. There are also camps that offer inclusion programs as well.”
When seeking a camp, “It’s important to be up front and honest about your child’s needs with the camp director to ensure the camp is equipped to properly care for your child,” says Flax.
“A HOME AWAY FROM HOME”
At Camp Nejeda, one of the goals is to provide a traditional camp experience. “This is a place where the campers are just like everyone else and wearing an insulin pump or injecting insulin is not a big deal,” says Jennifer Passerini, director of development. Camp Nejeda is for campers with type 1 diabetes — a chronic condition in which the pancreas does not produce the insulin needed to allow glucose to enter cells to produce energy. It cannot be prevented and there is no cure.
Director Bill Vierbuchen says the residential camp offers a zip line, archery, canoeing — basically what any camp would offer and more. There is also blood sugar testing and counting carbs.
The 72-acre camp in Stillwater includes programs on nutrition and diabetes management. Campers come for one- or two-week sessions, most from the tri-state area, many from Mercer, Morris, and Somerset counties. Most campers return year after year. It is one of five independent nonprofit camps in the country for type 1 diabetes. Camp Nejeda also offers two summer day camps, one in New York City and one in Deptford.
“It’s a home away from home,” says Passerini. “The kids just want to fit in. The psychological and social aspect of living with a chronic disease is often overlooked. Think about managing the disease for 24 hours a day, seven days a week.”
Counselors are all alumni. “The value of having counselors with type 1 diabetes is that the campers find positive role models. Seeing the counselors successfully managing their diabetes is empowering,” added Passerni.
Campers are referred by pediatric endocrinologists, school nurses, and those who work with the specific population. The specialized medical staff includes 15 nurses and a pediatric endocrinologist. A third-year family practice resident from Hunterdon Medical Center is present as well. Campers have opportunities for hands-on learning, such as how blood glucose levels may be affected by an adrenaline rush from the zip line, or how insulin doses are calculated based on food intake, stress levels, and physical activity. A knowledgeable camp staff is crucial for the campers’ well-being.
A camp like Nejeda, a stand-alone nonprofit, does not survive without charitable support. “It is not research, but it has immediate impact on the campers today,” says Passerini. Donations help keep camp fees low, and provide scholarships pay the cost for many.
New Jersey Camp Jaycee, an ARC of New Jersey residential summer camp for children and adults with intellectual disabilities, also takes pride in offering a comfortable camp experience. Its new director, Maureen Brennan, says, “Camp Jaycee becomes ‘a home away from home’ for not only many of our campers, but also for our staff. Both come from all over to enjoy the activities and outdoors.”
Another camp for a very specialized group is Camp Quality USA New Jersey, for children with cancer. At Camp Quality, says Executive Director Al Passy, every camper is paired with a companion throughout their stay at camp and throughout the year. The camp’s origins are in Sydney, Australia and the New Jersey residential camp is one of 15 in the country. Camp Quality is a typical camp with baseball, campfires, swimming, and a full range of summer camp activities and recreational programs. The volunteer-driven and community-funded nonprofit is held for one week during the summer, and runs on the gifts of donors and supporters. A gala is held each April, notes Passy, to help fund programs throughout the year.
Camp Quality New Jersey operates from a site rented from the Newark YMCA’s Camp Linwood MacDonald in Sussex County. The campers, ages 5 to 17, are in remission with their cancer.
“We run a one-on-one program,” Passy says. “Each child has his or her own companion and they keep in touch during the year. There is a three-day winter camp for teens in February and two family days that include the companions and the camper families.” The medical staff includes volunteers from CentraState, St. Peters University, and Robert Wood Johnson hospitals in New Jersey.
“Parents welcome the experience for their kids to be like other kids,” he says. “They truly appreciate the camp. The children come back more mature and more able to handle their challenges. They are among other children with the same illness, and out of hospital settings. Basically, they have a lot of fun!”
OPTIONS FOR LIFE SKILLS
Most parents will search the internet for appropriate camps, but Ari Segal, director of the overnight Camp Lee Mar in Lackawaxen, Pa., has this advice: “Speak to the camp director, but also speak with the family of a current camper. Most camps are happy to refer.”
Segal is only the second owner of the 66-year-old Lee Mar, but when he had his own child with special needs six years into his directorship, his mission became more clear. While running a camp for children with mild to moderate neurological disabilities has challenges, such as special diets and the need for a low camper to staff ratio (1:3 in some instances), “seeing the pleasures that the children get out of camp is a real joy,” he says. “They don’t want camp to end.”
Lee Mar offers an academic and speech program. The staff will follow Extended School Year goals (agreed upon in meetings with school districts), and Individual Education Plan (IEP) goals. Some, but not all, school districts may help with camp tuition if a camper is considered to be maintaining year-long goals. The seven-week program gives campers, who come from New York, New Jersey, Pennsylvania, and around the world, time to acclimate.
It also offers the Living Independently Functional Education (LIFE) program, which takes campers to supermarkets, banks, and into the community, and readies them for independent living.
The camp is for ages 7 to 21, but alumni with disabilities often consider vacations through The Guided Tour, Segal’s travel and vacation program for adults with disabilities.
Some camps welcome neurotypical campers or siblings alongside their campers with special needs.
Mane Stream therapeutic riding camp in Oldwick is an inclusive summer day camp for children with special needs, their siblings, and their typically developing peers. The activities, mostly based on horses and riding, promote independence, self-confidence, team building, and socialization while allowing each camper to explore and discover new skills, according to its website.
Rebecca Wanatick, manager of community inclusion and program services for the Jewish Federation of Greater MetroWest NJ, which covers Essex, Morris, Sussex, Somerset, and Union counties, noted that two area Jewish community center day camps offer inclusion to campers with disabilities: Camp Deeny Riback in Flanders and Camp Yachad in Scotch Plains.
Many in the camp field, like Wanatick, will answer questions and guide parents. Parents who are looking for a camp can call her and she will ask about their needs, whether they want indoor or outdoor, and “work with a family on what their child would need to be most successful in a camp setting.” The camps, by their nature, meet social/emotional goals on a daily basis.
“There are absolutely more options,” she says. “More overnight camps, and more camps open to including campers with disabilities. Inclusion benefits everyone, not just the campers with special needs, and reflects our diverse world.”
A sampling of summer options for those with special needs and/or medical issues:
Camp Lee Mar, in Lackawaxen, Pa., is a residential camp for youths ages 7 through 21. 215.658.1708; www.leemar.com
Camp Nejeda is a residential camp for campers ages 7 to 15 with type 1 diabetes. 973.383.2611;
Camp Quality USA New Jersey is a residential camp for youths ages 5 to 17 whose cancer is in remission. 732.845.1958; www.campqualityusa.org/nj
Camp Ramapo, in Rhinebeck, N.Y., is a residential summer camp that serves children ages 6 to 16 who are affected by social, emotional, or learning challenges including children affected by autism spectrum disorders. 845.876.8403; www.ramapoforchildren.org
Comfort Zone Camp, for children grieving the loss of a parent, sibling, or primary caregiver. Various locations. 866.488.5679; www.comfortzonecamp.org
Hamilton Area YMCA SKOR and SOAR, Special Kids Organized Recreation and Special Organized Adult Recreation programs for individuals with intellectual, physical, and/or emotional disabilities. Contact Tyler Koerber at 609.581.9622, ext. 122 or email@example.com
Helen L. Diller Vacation Home for Blind Children, in Avalon, is a camp for children ages 7 to 15 with a visual impairment. Camp office: 609.967.7285, off-season: 610. 329.6133; www.dillerblindhome.org
Monmouth County Parks offers therapeutic recreation in Colts Neck with several camps for those with disabilities. 732.460.1167, ext. 22 and 24; email: firstname.lastname@example.org
New Jersey Camp Jaycee is a residential summer camp for children and adults with intellectual disabilities located in Effort, Pa., and run by The ARC of New Jersey. 732.737.8279; www.campjaycee.org
One Happy Camper NJ offers help with Jewish camp options. 973.929.2970; www.onehappycampernj.org
Also, families can call the American Camp Association, NY and NJ, for free, one-on-one advice in navigating the many special needs camps options at 212.391.5208. It also offers a list of camps that are ACA-accredited.