Lefty Righty Camp

We are mid way through the first of three weeks of Lefty Righty Camp. I'm exhausted and Alex looks like he is running a marathon every day, which when you add up the work he is doing, is probably the equivalent. This amazing camp uses constraint therapy to work the weak side of kids with cerebral palsy. Alex has a brace on his weak left leg and a full cast on his strong right arm. For 6 hours a day, the P/Ts and O/Ts work the kids' weak sides, working their gross and fine motor skills. Because it is a long drive for us, and due to Alex's tenuous seizure stability, I have to stay on campus. The camp, run by a private therapy office, takes place at a very nice private school, the same school, in fact, that rejected Alex 2 years ago because they did not think they could "satisfy his needs". That bitter pill has mostly dissolved and I am enjoying running around their playing fields. Izzy, who needed something to do while Alex was in camp, is attending the private school's summer camp. This constraint camp is the first time in our lives that we are interacting consistently with families of children with brain damage. It is both inspiring and depressing. What strikes me most is the love and dedication of all of the family members who send their kids here. Families drive 2-3 hours in some cases, every morning and evening, to allow their kids to attend. Siblings join their parents on the long drives and are there to encourage and support. Yesterday, I watched as an older brother whispered into the ear of his little brother, blind and wheelchair assisted. The disabled brother listened intently and sat contentedly, madly in love with his older brother. Or was he the older brother? Maybe not. Maybe he was younger, like Izzy, who took over the older sibling's role. These healthy siblings carry concerns that most kids do not. Worry, fear, anger, love, pity, patience, guilt, sadness. It isn't easy for anyone. One incredibly brave mom flew in from Iowa, checked into the Ronald McDonald house, and overcame the many annoyances of traveling alone, with a child with disabilities, to a new part of the world, to stay in one of our state's armpits, after arranging for the care of her other three kids back home, so that her 3 year old would have this opportunity to improve her physical and cognitive abilities. She and her daughter are now staying with us. Many of the moms, like me, stick around all day, knitting, reading, or setting up small offices in the dormant kindergarten rooms, squishing into tiny chairs and hoping that no one asks us to find someplace else to work. Our hounds come along too. I take them running after drop off and take them out for periodic water breaks throughout the day. The campus grounds are about a mile circumference, so I can run, around and around, and always be near should Alex need me. It's all worth it. From day one, we have seen major improvemens in Alex's weak hand. He comments on it every day and shows me all the things lefty can do that he couldn't do last week. A new pediatric orthopedic surgeon whom we saw last month told me twice during our visit that "the literature shows that on average there is no long term benefit to constraint therapy...". I responded that it was constraint therapy that finally unwrapped Alex's arm from his chest at age 2, and that we have seen nothing but long term benefit from this therapy. She said, "oh, well, if it works for you...". Uh, ya, right. I wonder how many patients she has discouraged from taking advantage of this life-changing therapy. Fortunately for all of us at Lefty Righty Camp this week, we turn a deaf ear to the discouragement, and lead with our gut, and our eyes, and our hearts, as chipped and cracked as they sometimes feel.