Thursday, August 13, 2009

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.


What a heart-warming story. I also have a child with multiple disabilities, she does walk (but unsteadily) she cannot communicate with everybody yet and I am very nervous of sending her to a camp especially with a virile immune deficiency. But this story has given me some hope that maybe one day she will be able to attend camp and rough it for a while just like I used to during my younger days.

This is a wonderful site and a warm story. I'm so glad there are camps like Kennebec. I was also glad to see that your son was able to horseback ride there. I'd love to do that for my son someday (have to wait a few years though).

I am so thrilled to read that Ben had a fabulous time at camp. Just as important is what he contributed to others at the camp.

Thanks for sharing Louise,


Hi Geoffrey -- thanks for your post. How old is your daughter? I know that children with very complex needs have been accommodated at some overnight camps. I'm not sure about the issue of immune deficiency, but I wrote to another reader whose child had a successful overnight experience this year -- I'll let you know what I hear back. Hope to hear more about your daughter. Cheers, Louise

Hi David: Thanks for visiting the site! Therapeutic riding programs are well established now, so I'm sure your son will sit high on a horse when he's a little older.

Our other readers may not know that you have your own blog where you write about parenting your son who has cerebral palsy. The blog, Scattering Bright, is at

Look forward to hearing more about your adventures, Louise

Hi Barb:

Thanks for your post. You are so right that there is a perception that children with disabilities are on the receiving line of help -- and not an understanding of the gifts they give to others/what they contribute.

Cheers, Louise

I just wanted ot make your viewers aware of Camp Kodiak. My sister goes there every year and LOVES it. It is the best time of her life by far. They have one staff member for every two campers. Campers include children and teens with and without learning disabilities, attention deficit disorder & Asperger Syndrome. It's quite pricey, but well worth the investment if you can get your child in. They even have a program for older campers which my sister is in now. She is the most comfortable and the happiest when she's there.

Hi Sara -- thanks so much for letting us know about Camp Kodiak. I think it's awesome that they also provide programs for young adults. I wish some of the summer camp programming extended throughout the year!

Thanks for writing! Louise

What a great account of a groundbreaking week and a massive leap forward for Ben. I feel I know him a little better already - what an impressive character! Maybe next time he'll catch a shark! Love to you from the UK, Vyv

My son Taylor has been going to Camp Kennebec for several summers and every time I pick him up at the end of camp he says "I go next summer?". Taylor has Autism, Fragile X Syndrome, epilepsy, and development delay. The first time I took him I wasn't sure how he felt about being there. We met with the big school bus that takes them to the camp. I had to go in to sign papers so I was going to take him in the car. He looked at me and smiled...I knew he wanted to take the bus with the other campers. I was overcome with joy and relief that he wanted to go on the bus. I knew everything was going to be just fine. We are preparing for another wonderful summer at Camp Kennebec for Taylor. I highly recommend it.