As pediatric therapists we are often involved in planning for the transition of our young patients to adulthood. Recently my colleague Magdalena Oledzka and I travelled with six adolescents and young adults with disabilities to Crested Butte, Colorado for a week at the Adaptive Sports Center. Our participants took part in many wonderful physical activities and challenged themselves physically and mentally, often surprising each other with their capabilities. One overarching theme dawned on us as the week progressed. That theme was the transition from adolescence to adulthood; from dependence to independence. Many scholarly articles have been written on this subject but here are some of our observations from our time away.
We began taking groups of patients on trips to the Adaptive Sports Center three years ago because we saw some of our patients go through major surgeries to improve their mobility but then have no change in their participation at school or in their communities. We decided to take these children to a place where they could challenge themselves, their own expectations, the expectations of their families, and the community in which they live. Suddenly these children, who had done little more physically than participate in regular physical therapy, were skiing, biking, and white water rafting. But it was more than the physical activity. It was self-determination. Before beginning these trips we asked a participant, “What is the one thing you want others to know about you?” Without prompting, he replied, “That I can do anything anybody else can do. Sometimes it just takes me a little longer.” This kind of self-determination and awareness is crucial to building independence. The Adaptive Sports Center helps empower our children and young adults. They leave realizing that what seemed impossible is not really that far out of reach. This is an important lesson for all of us who are raising children. We need to encourage them to set goals, to have dreams and aspirations. Then we need to support them in achieving those goals.
Perhaps one of the biggest realizations Magda and I have had in our time with these young adults is their need to understand their disability. Surprisingly not all the participants fully understood their diagnoses, how their bodies were affected, and how it would impact them as they grow and age. It is imperative for a young adult to understand his disability in order to properly advocate for himself, seek out the supports he needs, get the most appropriate medical care, and discuss any accommodations he will need with academic advisors or future employers. Our participants were eager to speak about how their muscles worked and the surgeries they’ve had. They were able to compare experiences with their peers and ask questions. Frank discussions are necessary to equip our children with the ability to advocate for themselves.
Another benefit to our trips, in addition to the physical and emotional skills gained, are life skills. Things such as meal preparation, time management, and money matters. On the trips the participants take on roles in the house, in the kitchen, and serving meals. They are responsible for choosing activity appropriate clothing for themselves each day and scheduling enough time to wake, shower, dress, and have breakfast so they are on the bus ready for the day’s activities without delaying their friends. On our day of rest, we typically go to town for a little souvenir shopping. There the participants learn to balance their money. They choose how they will spend it, whether that means buying souvenirs for family members, purchasing a keepsake for themselves, and/or saving enough for an ice cream treat at the end of the day or a snack in the airport on the way home. Another important life skill learned on these trips is getting along with new people. At home we all fall into a routine. Our friends and families understand our idiosyncrasies and our needs are easily met. On these trips a virtual group of strangers live in one house and spend every minute together for a week. We need to get along, be respectful of others’ space and time, and socialize with each other. These skills are crucial for a college freshman or a new employee.
One participant on the HSS Adaptive Sports trip has been coming with us since its inception. This was his fifth and final trip (as he is aging out of our program). On our last night together he spoke to us about feeling lost. He described a feeling that most of us have had during transition periods in our lives. This participant was feeling pulled between childhood and adulthood. A common issue as many of us find ourselves in college or our early twenties. He talked about the things he saw his classmates doing, his family’s expectations, and his dreams. We listened. We shared. And we reviewed the lessons learned from the trips, many of which I described above. He went to bed that night realizing how rich his life was and the potential he had, and was reminded of the many resources available to him. He knows now he has the wings to fly and is gaining the confidence to take that first leap out of the nest. This is very much at the core of our mission for these trips. Participants sprout wings and learn to use the drive inside of them and support around them to fly.
Maureen Suhr is a doctor of physical therapy and board certified pediatric specialist. She is assistant manager of the Hospital for Special Surgery Rehabilitation Network.