The last year has been tough for Ben. He often acted out at school where the demands seemed too much. Outside of school his world seemed to get smaller. It's hard to find activities for him that he enjoys and can participate in easily. He doesn't get enough exercise and is content to sit at the computer or TV for hours.
So imagine my surprise when I learned that Ben was becoming quite the aqua plane champ at Camp Kennebec. It's hard to see, but if you look closely in the pic above (or zoom in on it), you'll see Ben being pulled on a board behind the boat.
He holds on to two ropes with knots in them.
In the last three weeks he's also done: tubing, horseback riding, water skiing, music, woodworking, arcade, puppetry, talent show, canoeing, sailing, swimming, go-karts and kayaking.
At the carnival a week ago, Ben chose to be the person to sit in the booth while people try to hit a target. If successful, a nail punctures a water balloon over Ben's head. He participated in the talent show where another camper sang his favourite song: When somebody loved me (Jessie's theme song in Toy Story).
Here's an update from Coco, our friend who is with him this week at camp:
"Ben is becoming a pro on the aqua plane. He didn't even say 'no' once when he was getting into the water yesterday to wait his turn to get on it!
I am so proud of him. He is excited for the dance tomorrow night. Tomorrow is one of his counsellor's birthday's. Yesterday we made her a card. He knows that tomorrow we will get cake.
It's an overcast day today. Potential for rain is everywhere [Ben's favourite weather] so he has been looking up at the grey skies and just about giggling with excitement.
He has been initiating signing a lot this week and asking a lot of 'why' questions. I've been interpreting for Ben a lot with his interactions with staff and campers here while his counsellors are really taking a lead with guiding him.
He wrote in his journal the other day: 'I feel happy at camp.' I think that pretty much sums it up. Camp is great for Ben. I believe he has a true sense of belonging here. The staff here are great with him, as are many of the campers."
I love picturing Ben, outdoors, waiting for his next turn on the aqua plane. Then, being pulled across the water like he's flying, the wind in his hair and an ear-to-ear grin on his face. Occasionally he'll burst into laughter, but he'll quickly pull himself together, otherwise he'll fall off the board. But even if he does fall off, which he does, he's learned how to get back on.
These are the stories I want for my son, the stories that diverge from the disability narrative and what he can't do.
These are the stories Dr. Paul Browde of New York University spoke of at the international conference on narrative medicine in London in June.
“Everyone has a story,” he said, noting that “people who are marginalized often feel they don’t have a story.”
Second, there are many stories in every life, he said.
And third, “a good life is one richly described.” This means a good life is one about which many stories can be told...It’s not about stories having a positive spin, but rather about excavating for many different stories to describe someone’s life, which makes the life richly-described, and that is a full life.”
I thank our workers Sallyanne and Coco and all of the people at Camp Kennebec for giving Ben the opportunity to live and tell a different story.