Summer camp can be a profound and transformative experience for children of all ages. Camp challenges us to interact with people we don’t know, perform feats we didn’t think we were capable of, and develop a stronger sense of self-reliance. But when the very act of moving around is a labored chore, summer camp experience can become less carefree and more stress-inducing, as in the case of five-year-old James.
“James is exceptionally resistant to change,” shared his mother, Megan Thynge. “He’s very protective of himself. He’s so dependent on other people for help and getting around.”
James was born with a rare genetic disorder, neurofibromatosis type 1 (NF1), which comes with a host of varied complications. James’s biggest daily challenge is his physical disability. Unable to walk independently, James uses a wheelchair as his primary means of mobility. Even that little bit of mobility comes with the caveat that James is unable to get in or out of the chair without aid.
“He’s our only child, so we spend a lot of time focusing on his needs, and, frankly, worrying about him,” said Megan.
In the beginning, James spent his time in year-round daycare that specialized in an inclusion program, composed of classrooms filled with a mix of children with and without special needs. Daycare lasted all day and ran year-round.
“He received all of his therapy there and was just very well cared for,” recounted Megan. “Once we got comfortable there, we really didn’t have to worry about who was providing care.”
Megan says that building this rapport between child and caregiver is crucial and exists regardless of a child’s specific physical, emotional, or occupational needs. If the child feels comfortable and trusts the individuals caring for them, uncertainty can be significantly easier to face. In Megan’s experience, this is perhaps the single greatest factor in James’s success in the year-round program.
When James turned four, his time in daycare came to an end. Depending on which state you live in, four is the age when school enrollment begins for most children.
Regardless of a child’s needs, this type of transition can have ripple effects that aren’t always immediately apparent. As families navigate the next steps of the transition and help their child stabilize, new questions arise: Where will the school be? Will they be able to accommodate specific needs? Will the child feel comfortable in his or her new surroundings?
“When the reality of him getting older and needing to actually attend school set in, it was panic-inducing,” said Megan. “People that have known him all of his life and how to care for him are now gone.” With the continuity of care disrupted during the transition period, the family faced the challenge of bringing James’s new caregiver up to speed.
A family’s desire to have their child attend the best possible school for their needs is universal. However, in the Washington, D.C. region where Megan’s family lives, the school enrollment process is fairly unique. Many schools in the D.C. metro area are not required to be accessible to children with physical disabilities, as D.C. will find families a school with accommodations to meet the needs of individuals with disabilities. While helpful, it does not take into account other problems families may experience. Families must account for work schedules, commutes, cost. Finding the perfect place isn’t always as simple as finding accessible facilities.
Fortunately for Megan and her family, James was able to enroll in a school that could meet his specific needs both in and out of the classroom. Once a school was found, the family still had to consider the change in schedule. Leaving year-round daycare for more traditional schooling meant a new challenge to confront: summer vacation. Rather than planning vacations and getaways, for the Thynge family, summer meant finding care for James while school was out of session.
“The first six months were a learning process for everyone,” recalled Megan. “But then the second reality came in. The school doesn’t run year-round, what are we going to do for him all summer?”
Both Megan and her husband work full-time, without any wiggle room for one of them to take an extended leave from employment. With no immediate family in the area capable of taking care of James for an entire summer, their options became increasingly limited.
An unexpected interruption from work can be devastating under the most ideal of circumstances. Loss of hours means loss of income and a disturbance to home life. The snowball effect can accumulate until the burden seems insurmountable. If bills can’t be paid, camp becomes a distant dream.
“It was a pretty scary thought process. We didn’t know what to do,” said Megan.
Dismayed but not discouraged, Megan turned to some of her trusted resources: mothers and families with similar experiences. Using online communities, social networks, and parents she knew personally, Megan gathered a number of recommendations for her son. However, her hunt for information soon highlighted the frustration of trying to adapt broad-sweeping special needs resources to her child’s highly individualized situation.
“I find very few people in a similar situation as me, where my child doesn’t have any severe intellectual disability but faces constant physical challenges,” explained Megan. “Finding a camp that seemed like it would fit for James became a daunting challenge for us.”
James may require assistance getting around, but he doesn’t necessarily need a lot of help engaging in the activities presented to him. He is capable of participating with developing children in many activities that aren’t driven by motor skills.
As fate would have it, James’s school decided they would use their own in-house after-care provider as a summer camp option for families of the school. Further, the school hired James’s one-on-one aide to help staff the summer camp.
“We found a unicorn!” exclaimed Megan. “We were extremely lucky.”
However, this stroke of luck far from represents the norm. Oftentimes, after-care is delivered separately from the school, with schools hiring independent contractors to fulfill the need. In James’s case, when he started school, the after-care provider initially refused to accept James as part of the program, saying they could not meet James’s needs. In the end, the school decided to take a different route, terminating the contractor and handling after-care and summer camp in-house.
Megan’s family felt fortunate that James’s school made the concessions that it did. Nevertheless, in many cases, parents will be forced to find alternative solutions for their children. Those alternatives often carry with them the burden of financial disruption and schedule overhauling.
What would the Thynge family have done if summer camp wasn’t an option? “I don’t have very much leave from work because I take a lot of time off for my son,” said Megan. “We had thought about possibly having my husband take a bunch of leave over the summer as well.”
Whatever solution was available, it would have meant asking for fewer hours, a part-time work schedule over the summer, or working from home. It would also have required the family to start from square one in the process of looking for camp that would be able to meet James’s needs.
For many families, it can take months of planning to ensure as many needs as possible are met. To further complicate plans, most summer camps only last a week or a month, not the whole summer. In addition to turning the summer months into a jigsaw puzzle of summer camp placement, families have to take into account the constant unfamiliarity that their child will be exposed to and the unpredictability of how the child will respond to novel environment.
“I started to panic a little bit,” Megan remembered, thinking about her son having to attend a new summer camp. “It’s really scary to trust that somebody else is going to be able to do the right thing for him.”
But for now, Megan can put her mind at ease for another year.
Megan knows how lucky she and her family are that things worked out the way they have. Although the camp search can present hurdles, Megan advised other families to not be discouraged.
“Keep trying. Even
if one thing doesn’t seem like it’s going to work out, keep digging,” said Megan. “Don’t be afraid to ask as many people as possible. It can be really hard to ask for assistance finding things because we often ask people for so much already, but you kind of have to when it comes to your kids. Don’t be afraid to keep putting yourself out there until you find the right thing for kid.”
ABOUT THE AUTHORS
Jeffrey Giorgi is the Communications and Operations Assistant at Genetic Alliance, focusing his efforts on the behind-the-scenes work of the organization. Jeffrey is interested in the relationship between care providers and those they serve, and individuals’ experience seeking care. He holds a BA from George Mason University and has worked in nonprofit organizations ever since.
Amelia Mulford is a Program Coordinator for Expecting Health, Genetic Alliance’s maternal-health initiative. She is interested in the ways that health systems can support families and individuals as authorities in their own medical experience. She holds a BA in Psychology and Hispanic Studies from Lewis & Clark College and plans to pursue a career in genetic counseling.