By Guest Contributor, Kathy Bell
My son Kevin is 20 years old. Kevin has Mowat Wilson Syndrome, a condition that involves developmental and medical challenges. He is non-verbal (although he communicates well with his iPad), and he has motor and processing issues. From a physical care perspective, Kevin can do some things on his own, but he requires physical support for many of his daily tasks.
This past Sunday we dropped Kevin off at camp for the week. Now his third time at camp, he walked up to the aisle to the stage when his name was called, showing Kevin’s comfort and sense of belonging there.
It took us many years to be in a position for Kevin to go away overnight. Sure, he had had slept over at his grandparents over the years, but never with people we (he) didn't know.
When Kevin was quite young, we worked with a behaviour therapist who coached us to introduce nights away for Kevin as soon as we could, preferably no later than 16. New settings would teach Kevin that it was okay - even fun, if we could get that far - for him to be away from us. To this day I hear the therapist’s words, and though we didn't understand it at the time, this coaching was more about teaching my husband and I to learn to be away from Kevin.
Yet, it still took us many years to be in a position for Kevin to spend the night away. We certainly didn't seek it out, and sometimes even felt guilty about it. So, when the opportunity came up, saying no wasn't really an option.
At first, Kevin went away for only one night, and then two the next time, eventually building up to being away for a week of summer camp. A few weeks before Kevin's first time at camp, the school sent a social story about, "what to expect at camp," with photographs of the facilities and activities there, to introduce and orient Kevin about was ahead.
When Kevin prepared to go away to school camp for the second time, a year later, he was very excited. This time around, what I learned was unexpected. Kevin brought me his camp social story five times a day, every day, three weeks before the trip. He wanted to look at the photographs and talk about who was going to be there and what they were going to do. Not only did he want to go, I realized he was telling me how much he needed to go, knowing how much fun he would have.
You might wonder what Kevin going to camp has to do with our roles as his caregivers. Here is what I would tell you. Meeting Kevin's needs each day, although not always easy, is a day that speeds by and is filled with tasks and considerations. Stepping away and letting other people support Kevin is an entirely different exercise. It is odd not to know what he did for a day, let alone an entire week. When he is away I most often fall asleep wondering about his day. I remind myself though that as a mother of a 20-year-old, it is a perfectly typical moment not to know all the details.
Three years later during Kevin's time at camp, we focus on ourselves and our other two children. We eat out, wake up when we want to, go for walks, see a movie and treat ourselves to a week of doing what we want and when.
Last year, during the early morning two-hour drive to pick up Kevin, I remember asking my husband if he thought Kevin missed us while he was at camp. When we walked into the chapel with the entire camp watching the end-of-camp slide show, I got my answer. The photos showed Kevin, and every other camper and counsellor too, laughing and dancing and swimming and painting shirts, and eating and sleeping and acting silly at the campfire. It is not clear who was having the most fun: the campers and their friends or the counsellors who take a week off work to attend or the therapists who give a week of their four-week summer vacation, or the mom who now helps run the camp as an old-timer who had attended since college, or all the students who are there to help. For this one special week, this group becomes family and they look after each other.
It is the most beautiful form of care I can imagine. Kevin didn’t miss us. He was too busy having fun.
Kathy Bell is a Canadian writer, currently living in New York City. Her blog, A Sharmed Life!, chronicles her family as it navigates the streets and situations of life in New York City and beyond.