The photos on the wall were of children bundled in snowsuits getting ready to take the slopes of Loon Mountain, but the air was a mix of blistering temperatures, humidity, and eagerness. Several therapists, volunteers of different ages, interns, and administrators were having their first meeting to receive an introduction to Adam’s Camp and the work they had gotten themselves into for this one summer week. “If you take what you’re getting paid and break it down hourly for the work you will be doing….actually just don’t do that”. This is what Outreach Director Bob Horney said with a compassionate laugh as he began talking about the story behind this one-of-a-kind community. “The changes, the progress you’ll see this week, the stories, that’s what it’s all about.” In a room full of people ranging from first-year staff to people with decades of commitment to the unique program, who had traveled many miles to be on the mountain, it didn’t take any more explanation to prove that this truly was about the community.
Adam’s Camp is an organization that offers week-long programs to families who have children with various developmental disabilities. It began in Colorado where it continues to operate several programs throughout the year. Today, it has opportunities not only for families but also an Adventure Camp for young adults with disabilities where they get to experience overnight summer camp- a taste of independence often reserved for kids without the label “special needs”. Outreach family programs began in 2008 in Nantucket and have since added camp weeks in Alaska and New Hampshire. The essence of Adam’s Camp is the connection that develops- seemingly in an instant when participants show up.
Concerns these families face when planning a vacation are as diverse as they are numerous. For much of the year, they’re supporting their children in special education settings, various therapies, and may even be dealing with medical and legal issues- reminders of which go up on the refrigerator as normally as a grocery list. At the same time they seek getting away as a source for calm, they also consider the consequences of leaving behind professional and natural supports. For a child who may be non-verbal, behaviorally defensive, or limited in mobility, vacation may take on a much more stressful definition than most people understand. Adam’s Camp makes it possible for families to not have to choose between a family get-away and positive supports for their children.
The framework of Adam’s Camp is already a very unique set up. Where there exists in society support groups for parents, clubs for siblings, and specialized opportunities for people with disabilities, the setting for whole family involvement is rare. This is backed by the non-profit’s values that include teamwork, integrity, and family-oriented innovation. Now, it might sound obvious that a group of people working with children with disabilities would have values such as these. For anyone who has been in “the field” for any amount of time they know it’s an unfortunate reality that this isn’t always the case. Data, results, and red tape often take seats away from compassion, social opportunity, and love. The organization’s website declares a mission making it clear that they are a commitment to the potential of all people:
“The mission of Adam’s Camp is to maximize the strengths and potential of children and young adults with special needs by bringing together dedicated families with outstanding professionals and volunteers to provide specialized therapy programs, family support and recreational camps.”
Throughout each camper’s day a team of music, occupational, speech, and physical therapists collaborate with a team of volunteers to game-plan ways to help each child work in their potential. Rather than separate music from speech and motor planning from muscle development, the entire team pulls their skills and knowledge base together. This teamwork is what makes each kid the center of attention rather than the pawn being passed between one perspective and the next (often the case in school settings). These observations may come across as speculative or biased. The actual anecdotes from participants, staff, and parents reveal just how powerful this unique dynamic is.
Adam’s Camp is named for the son of Bob and Karel Horney who was born with cerebral palsy. “Our weeks were routinized- Monday: OT, Wednesday: PT, Friday: Speech. It’s a routine so many families with kids with special needs know.” But at 5-years old, Adam had yet to take his first steps. Bob and Karel accepted a recommendation and spent a week on a mountain where a physical therapist devoted entire days to Adam’s progress. Upon return, an idea struck the family. Bob explained “we thought- what if we get the different therapists to do work together and take this 5-days thing and make it happen at home?”. An idea became one week of “camp” for families the following summer. “On the last day of camp we were all sitting at this long table- therapists, families, siblings- it didn’t matter what their role was, we were just all there.” Bob continued to describe the scene in which he witnessed his son, with the assistance of a walker and no prompt beyond his own determination, stand up and took his first steps to see his friend at the other end of the table.
While Bob claims that a having a board of directors, founding a non-profit, or even continuing this camp beyond Adam’s youth was never their goal, it seems that all of it was inevitable. Throughout the week I heard stories of kids who had never eaten food outside of the beige color scheme trying strawberries, children who never made eye-contact interactively playing with others, and siblings who had always been “socially awkward” making plans to keep in touch with their new friends. The camp staff spent countless hours preparing documentation, completing reports, and creating visual presentations so families went home with new ideas and practical documentation to bring to their home-based schools and therapists. “I think I’ve slept a total of 10 hours this week.” said a volunteer, Simone, as she laughed and played with a camper. She gave as much attention and joy- if not more- toward this camper as she did on day one.
Adam’s Camp began in 1986 and has since outgrown its capacity in Colorado. Outreach programs began to address the fact that families were flying in from all over the country to be a part of the community each summer. Other locations develop thanks to inspired families who collaborate with the organization to duplicate its framework. Last year at the Nantucket camp the first international family attended, inspiring a potential development for outreach in another country. The energy created at these camps is an obvious inspiration for families to continue attending. A practical reason is that many of these families just don’t have the services needed to improve care for their children where they live.
During the week of this 2015 program in New Hampshire there were many highlights of camper experiences. One young camper arrived with very few activities that motivated her. Some toys brought in by various staff changed this for her- supporting her behavioral and social development. On Wednesday, two groups of campers had a sleepover where therapists and volunteers were truly put to work. For many kids who might be on meds, aren’t able to independently bathe or use the bathroom, or who have behaviors unexpected to some people, the typical experience of a sleepover is quite a gift. “I think we forget sometimes that they’re still kids, or teens, or young adults. We so often are looking at their living skills and behavior development. Sometimes we need to step back and realize- ‘hey, this is actually typical for a teenage boy’ (for example)” describes camp volunteer, Kathleen. The morning after the sleepover, the oldest group of campers hosted a breakfast for the administration and board of Adam’s Camp. As a group they created invitations, menus, cooked the meal, and shared roles of hosting and serving. One board member reported “It was the best meal I’ve ever had”. Diagnoses, verbal skills, nor mobility restricted any camper from being a part of creating and hosting that meal.
While the camp is place where families get the rare experience of feeling connected, validated, and supported, it also provides a place for intensive work, vulnerability, and heart-deep developments in their lives. For this, many of the stories, names, and images remain protected by both Adam’s Camp and this writer. An intern named Caroline explains:
“You just have to see it, witness this. It’s hard to describe how life changing [this] is without seeing it.”
I got to spend the week coordinating programs for the siblings group. Stories of dramatic changes or unbelievable feats accomplished by kids with disabilities are common. The more daily aspects and experiences of caring for someone with a very involved disability is far less realized. Siblings are the resources for these stories and for demonstrations of patience, inspiration, and empathy unlike anything else. For the siblings, Adam’s Camp is a place to meet other kids who have unique experiences. Laughing about how much food their sibling can sneak, talking about the most recent hair-pull they received from their brother, celebrating their 8-year-old sister learning to use the toilet, or navigating the start of middle school while listening to their parents stress over IEP’s are all experiences generally reserved for these siblings. For some, Adam’s Camp is the first place they dare speak that they wish they got to spend time with their parents without their sibling- a thought often covered in guilt, or find hilarity in events specific to their sibling. It might be the first time they even realize that their feelings and thoughts are ones held by other kids, too. Because many siblings grow up thinking their family lives are unique to their family alone, making friends is a natural struggle. Additionally, the amount of maturity, empathy, and care for the world around them make these siblings outstanding among their peer-groups.
While much of the week for the siblings was spent on the mountain or in the pool, I snuck in a few activities to support the process of connecting through their perceived differences. One day the 6 older siblings from the group were asked to participate in a common team-building activity called the “see and be seen circle”. The kids were asked things like, “step into the circle if you like ice cream” and “step into the circle if you’re ‘special sib’ wakes up up at night”. Through statements ranging from completely for-fun to a little bit more serious, the kids got to see the many ways they were alike and some ways they were different. The game quickly turned into one of those stories Bob describes as the little moments that reveal the major impact being made in the week. “Step into the circle if you feel like you have friends who understand what it’s like for you to have a sibling with a disability.” I said. A few kids stepped in. Others stayed back quietly mumbling about how most kids just don’t get it. Then Marvell spoke up. “Shouldn’t we all step into the circle? Because we’re all friends now.” It was far beyond a 9-year-old stating that the group had become friends. He clarified for everyone that while many kids don’t get it, there do exist people who are committed to being there for each other. The entire group, for at least the week at Adam’s Camp, was just that.
Part of supporting the complex lives of people with developmental disabilities and the people who support them comes through first in understanding. Adam’s Camp is a non-profit and donations support costs of providing high-quality services to their participants as well as scholarships for families. They hold fundraisers throughout the year and more informations about these events and donating can be found on their website. As has been repeated throughout this article, a major contribution to this mission comes from being a part of it. There are many ways to volunteer with Adam’s Camp (also found on the website). This is an excellent opportunity
for students, therapy interns, and siblings of kids with special needs. Growth of Adam’s Camp seems to be much larger in need than in practical ability. It takes a lot to make sure that each program is done responsibly, effectively and with a focus on fun. Demonstrated by this organization is intelligence in making sure things are done in the right way for the framework, for the families, for the staff, and for the kids. This is a universal challenge for growing projects when inspirational energy can distract development away from purpose. There is no doubt in this writer’s mind that Adam’s Camp is surpassing that challenge and bridging the powers of love, quality, innovation, professionalism, and teamwork for a successful organization that hasn’t come close to its peak yet.
“Kids are tiring…Are we going to do this again next year? I hope so.” -two year New Hampshire volunteer, Patrick Spain.