To the Editor:
It was my first experience at truly letting go of Eliza, my 8-year-old daughter with Atypical Rett syndrome. Eliza has been in the school system now for five years, but sending her to a day camp for three weeks was different. No one at the camp knew her and her one-to-one aide had met her only on a few occasions. I was afraid but willing to take the step. I sent her to the camp with the hope that she would flourish and thrive and learn and grow, and they did not disappoint. The camp directors, counselors, aides and other campers held her in their care for three weeks, and the transformation was incredible to see.
Day one arrived, and there was intense hesitancy on my part to walk back up those stone steps, away from Eliza, to my car. The tears came quickly, tears of fear and of hope. I watched the clock all day. I waited by the phone in case something happened. The call never came. I was promptly at parent pick-up at 3:45, and there she was: happy, tired, safe and ready to return the next day.
That first week, I went to family day. It was a wonderful opportunity for me to see Eliza in action. I saw that she was happy and enjoying herself, but there was still a disconnect. She seemed to be existing in the program with the help of her aide, but only from the outside. The kids were hesitant and kept their distance, and the counselors were unsure of how to involve her.
I asked her aide to take a step back the next week and invite some of the other campers to be Eliza’s partner in activities. In week two, when I dropped her off in the mornings, some of the kids spoke to her, and a few of the counselors gave her high fives and hugs. I was starting to feel much better about her overall experience.
During the third week, magic happened. I received daily reports and pictures of Eliza that were incredible. She had a steady group of swimming partners, and she was playing independently from her aide. She was able to climb the ladder to the dock with no help at all, which is something she could not do in week one. Eliza had other campers asking her what she would be choosing for afternoon choice so they could be with her, and she began to protest the constant help from her aide by saying “by myself.”
The final day at camp, I was stunned by Eliza’s transformation. We walked in together that morning when I brought her to the camp gathering. The counselors stopped us and greeted her warmly by name, and other campers came up to her to say good morning. As her aide and I stood talking about the last day ahead, Eliza made her way down the stone steps by herself and joined the other campers circled around the counselors, singing their very last camp songs of the summer. She joined right in with the group, and I watched as she laughed, sang, jumped and yelled with the others. It was such an amazing moment for me to witness. This was the little girl who the doctors said would never walk or talk, and there she was among her peers, having this incredible experience.
When I left the camp for the last time, I cried even harder, but the tears were of joy, relief and a profound sense of gratitude to the camp, the counselors and her aide for giving Eliza the opportunity to grow and learn and to have this very “typical” summer experience. Eliza and I are already talking about what she’ll do next summer when she returns.