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Letting Go 

An 8-year-old with cerebral palsy heads to camp

Sending your 8-year-old to sleepaway camp for the first time is a big step for any parent, but it's an even bigger leap of faith when your child is disabled.

Our son, Joe, is a happy, social and silly third grader. Before he was born, he had some complications in utero that caused cerebral palsy. For Joe, cerebral palsy involves a wheelchair, an adult at his side to help with almost every routine and the inability to speak. Though CP doesn't define who Joe is as a child, it does in some ways dictate the activities in which he can be successful. Including him in a typical camp wouldn't be easy, and might leave everyone feeling overwhelmed: Oh gosh, here's this kid in a wheelchair. How will he participate? How do I interact with him?

Last August, Joe had the opportunity to attend the Double H Ranch in Lake Luzerne, N.Y. It's a camp that's set up to meet the specific medical and accessibility needs of kids like Joe. I had heard about it and thought, That's something I'll pack away for down the road. But once our friends came back and told us what a great experience their son had, I felt like I was ready.

First we had to fill out a lengthy application — campers have to apply to attend. A typical camp application is a couple of pages at most. This one is 15 pages, because you have to share so much medical information.

After he was accepted, I put together a book — a manual — to go with Joe, for my peace of mind, just so I felt like they had the answers. This is how Joe eats. This is what we do when Joe starts crying. This is how Joe tells you he needs something. This is what happens when X, Y and Z.

When we pulled into the parking lot to drop him off, there was this mass of people, all clapping and cheering. It was really overwhelming. I got teary just seeing how excited everyone was to welcome us.

After we checked in and visited the nurse, we went to Joe's cabin. We met the counselors, and they ushered us in and took care of the luggage. They felt comfortable enough to just take right over with Joe, but I wasn't ready to leave yet. I wanted to stay a little longer to go over all of the specific details that would help him have a successful stay and show them how all the equipment worked and how to use the brake on his wheelchair — all those details you can't put on paper very easily. They let us go at our own pace.

Joe was at camp for five nights and six days. We knew he was going to have a great experience, but we weren't prepared for how much his absence would affect the rest of our family.

Managing Joe's daily needs had become a way of life for us. People kept telling my husband, Sean, and I to take a break. They'd say, "Oh, Theresa, you could use a little respite." But I always felt that I was doing what I was supposed to do. After all, I am his mom. I enjoy my son. I don't want to spend time away from him; I want to be with him.

We've had some help with Joe, but we've always been nearby. With him at camp, we were three hours away. The camp experience made us aware of how many details we had worked into every routine of the day to accommodate Joe's needs. Not having to think about those extra steps for a few days felt very freeing.

Having Joe at camp also gave us a chance to spend some real quality time with Joe's twin brother, Parker. We were able to go to the amusement park without having to struggle with whose needs would have to take a backseat. We didn't have to decide not to do an activity because Joe couldn't do it, too. And we didn't have the guilt of leaving Joe out. For the first time in eight years, we had the freedom to be spontaneous.

It was also a revelation for us to see the bond that exists between our two boys. I had always worried that Joe's motor and speech impairments had somehow lessened the twin connection with Parker. It hit my heart really deep to hear Parker say, "I wonder what Joe's doing right now," or "When are we going to get to see Joe? I miss my brother!"

We couldn't have asked for a better experience for Joe. He enjoyed swimming, fishing, arts and crafts, and going to the Great Escape. He even did a zip line — I was kind of glad I didn't see him doing that! And he made new friends from around the world.

The counselors wrote journal entries of his activities, took pictures, and kept him so happy and busy that he slept better than he has ever slept in eight years. When we arrived to pick him up, he was grinning from ear to ear.

I went to camp. I have fond memories of being at camp and being silly with friends. For Joe to be able to do that, to just be an 8-year-old but have his needs met also — that was wonderful. We're applying again this year.

Theresa Soares is the family resource coordinator at the Vermont Family Network. She lives in Williston with her husband and their sons.
"Use Your Words" is a monthly essay in which writers explore parenting and childhood.
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