Magazine article The Exceptional Parent

TRANSITIONING INTO Summer: Finding Camps for Children with Special Healthcare Needs

Magazine article The Exceptional Parent

TRANSITIONING INTO Summer: Finding Camps for Children with Special Healthcare Needs

Article excerpt

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. …

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