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A different story

















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.

Memories of camp








































































































The boy is back

This just in from Camp Kennebec on day 2:

Ben slept fantastic last night. The storm was brutal but we got through it. Ben and I just got back from fishing. He caught 4 fish and we saw a huge turtle. Was amazing. 

To infinity and beyond!



He caught his first fish. He climbed up a 10-foot ladder in harness and roared down a zip line – like Tarzan – giggling all the way. He paddled a canoe and got a black eye when his sail boat tipped. He rode Velvet and Jack. In a speed boat, the wind took his breath away. He explored an island and collected bugs. He made friends.

He made friends!

The ordinary rites of summer for most kids, but a new world for my son Ben, who just spent his first week at overnight camp at age 15.

Ben has multiple disabilities, and we’ve never been able to find a sleepover camp that could meet his needs. Many are targeted to typical kids and aren’t physically accessible. Others are open only to kids with a specific disability.

Ben went to Camp Kennebec on Bull Lake, a “non-competitive, inclusive” camp for children with attention-deficit hyperactivity disorder, learning disabilities, behaviour issues and autism.

He was the first camper with physical disabilities who didn’t speak, but they were willing to make it work for Ben, who attended with a support worker fluent in sign language.

The camp isn’t fully accessible, so we borrowed an all-terrain wheelchair from Bloorview and they put Ben in the cabin closest to the eating hall and lake. The boys in his cabin were significantly younger than him, but closer to his size (he’s tiny) and developmental level.

I was a nervous wreck after we dropped him off – the first time we’d been separated in six years. But soon I received an e-mail, and then another, from Ben’s worker Coco, and what I read astounded me.

Everyone has taken Ben under their wing and have been going out of their way to include him.
Ben is a different person while riding. I think he really loves being up high.

Today he…went down the zip line. Getting him up there was orchestrated by no less than five Camp Kennebec staff with me down below shouting up and taking photos.

After that we went for a super fast speed boat ride. I don’t think my photos can possibly show you just how much he loved it.

Yesterday we were on the sailboat, when a big gust of wind took over and we tipped! We are all okay but Ben did get a goosebump on his forehead. He was cracking up laughing.

Today’s was Eric’s birthday. He is in Ben’s cabin. Ben was so excited about the party (ice-cream sundaes and cake).

Ben has earned two merit points.

We’re taking a trip to an island tomorrow. The wheelchair probably won’t work so one of the stronger staff is going to piggyback him up.

Ben went fishing and after many seaweed ‘fish,’ he caught a real sunfish. He was so excited.

Tonight at announcements I got a little emotional. Ben told me he wanted to tell everyone about catching his fish. He stood up and I knelt in front of him to interpret. He clearly signed: “Today I go boat to island. I go fish and I catch fish. I’m happy.” He got a big round of applause and Donz and I started to cry. I explained that I was very moved because I love seeing more of Ben meaning what he is thinking.

When we arrived to pick Ben up, every camper had a story about him. “Ben was my little buddy,” said one, putting his arm around Ben. An older camper proudly described how he “saved” Ben when the sailboat tipped.

Coco caught a beautiful moment on video of Ben on the trampoline. He doesn’t really have the strength or coordination to propel himself up and down, so he likes to lie down while the others bounce. Ben giggled insanely as a teenager bounced higher and higher and higher. The teenager, who has a developmental disability, then turned to a counsellor and yelled, beaming with satisfaction: “Look, I’m helping. Look, I’m helping.”

Camp Kennebec surpassed all of my expectations and dreams. The first thing the counsellors said when we pulled up was: “Can he stay for another week?”

Another staff member talked about how much the staff and campers got from Ben – seeing him succeed at so many things despite great obstacles.

“If I could give Ben the most wonderful surprise,” one camper said, “I would give him a voice.”

It wasn’t apparent to this camper, but Camp Kennebec had already done just that: for one glorious week, Ben was successful, included and heard.