Thursday, August 8, 2013

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.


This is just SO wonderful! You must be so proud and happy - watersports like this are fantastic for our kids. Nick (when he was smaller and before his hip problems) rode behind our boat, sitting on a windsurfboard with my husband holding him. They too fell off lots of times and we all had lots of laughs and so much fun. Nick liked to go full speed, but Jim would always signal "Slow Down" at the same time as Nick would signal "Go faster!" Great times in the summer :) Thank you for sharing, Louise!

I love everything about this post. Good for Ben!Finding opportunities to participate is half the battle. It makes me happy that Ben loves camp and I'm a perfect stranger. I can imagine how you must feel Louise. :)

Thank you Donna and Dee!

Loved hearing about the mixed communication around "full speed" and "slow down" between dad and son Donna.

You're right DeeAnn. It is so hard to recreate these opportunities at home and in the community. A camp like this is set up to include kids in all these activities. If only camp could be year round.

I love this! I'm so glad Ben is enjoying camp and trying lots of new things. Paul just returned from Cradle Beach Camp a few weeks ago and while it is very hard to leave him, we know he has a great time and has opportunities to do things we don't do at home and a chance to be with friends (for some reason no one does "play dates" at home). It doesn't hurt that we send him to the session that is "Christmas in July" and they set up a tree and give presents! Paul loves Christmas and would wear his Santa suit every day if I let him.

I think I might want to try aqua planing!

What a joyous post. Thanks so much for sharing this which brings a huge smile to all our faces! Do you have a way for someone to take video clips of Ben doing what he loves. I know Lucas loves watching clips of things we've done that he enjoyed. Maybe you can find a gym or deserted parking lot where someone can pull Ben around really fast on a board with wheels so he gets the fun feeling, although not water. It sounds so great, everything you said. I couldn't be happier for you both. (We came by to see you today, but missed you...)

If the demands at school seem too much at times why doesn't the staff accommodate him more? Can they recognize the triggers before things get out of hand? Hope so. It can make all the difference.

Congrats to Ben on his accomplishments at camp. The nice thing about camp is that normally the kids aren't being evaluated like they are at school. It gives them a chance to relax while learning a new skill.

This is so great! I know Ben would choose the most challenging sport and totally nail it, "way to,go Bennie!" I have to say, I'm glad camp isn't All year, I'd miss him too much. Plus, think about all the shenanigans we'd miss the opportunity on to get into right here in the city, ha.

Happiness--for you, for Ben. How wonderful when it all comes together.
It must bring a great sense of peace to your heart.

Awesome and inspiring. I just read a book called, Dreams For Kids by Tom Tohuy (I think that is the spelling). Great read if you are looking for something that is also inspiring. I found you on Love That Max this week (my post was #49.) Tell Ben to keep up the great work.

sounds so wonderful, louise, i'm really happy for you and ben! hope the rest of the summer is great too... xxx tekeal