The trunk smelled of must and seven years of camp. All of my old costumes were balled up, in plastic bags, preserved the way I had left them, after the last time I had been to Camp Fatima, ten years ago.
Camp. One week of a couple hundred people donating their time, their talents, to give fifty very special children the week of their lives. To give parents who never get a break a week of respite. One week to be silly. To wear costumes and sing at the top of your lungs so that you are hoarse by day three. One week of love.
They were all there. Everyone I have ever been at camp. Princess Leia. Veruca Salt. Snow White. There were impossibly tight dresses, I remembered with embarrassment. And the pink gown with rosebuds all over it. The one I found at “Macys”—what we call the racks of old prom dresses at the entrance to the Rec Hall—because it fit me perfectly. The one I wore to every formal dance, and still smells like it.
I took out my wigs, my Grinch slippers, my poodle skirt, rediscovering as I unpacked. I came to a bag that read Bridesmaid’s Dress. I took it out. It was too small for me to have ever worn it. Even back when I wore dresses too small to be worn. It was white—lace on top, tulle on the bottom, with pink rose petals sewn along the hem.
Another “Macys” find. It was a whim. A dream. It was the dress I would one day give to my daughter to wear to camp.
I have been waiting for this day to come. I have watched children grow up at camp, coming with their dedicated parents, year after year. They have a certain sensitivity, a capacity for empathy that is beautiful to observe. That I want Sophie to have.
Later that evening, when Sophie first stepped into the house. I told her I had a surprise waiting for her. “It’s on the couch. Go look.” Sophie ran to the living room and I heard her gasp. “It’s beautiful!” She held the dress up to her body, and placed the matching crown of tulle on her head. “Oh I love it!” she exclaimed.
“It’s for camp,” I told her.
“When are we going?” she was bouncing, excitedly.
“Soon. Soon.” Camp was still a couple days away. Sophie and I were joining my friend Pam and her two boys. I was to be the “stay-at-home mom,” minding the children as part of the Family Program, while Pam went off to work on the Resource Staff.
Resource is a demanding job at camp. It’s a team of experienced volunteers who have expertise in dealing with the unique needs of campers--managing behaviors, adapting activities. They support the counselors 24/7.
The Family Program was designed to allow veteran volunteers to come back to camp, without having to leave their families behind. I had primarily served on the Activities Staff in years past, which provides the entertainment for the campers— daily installments of a week-long play, thematic activities, dances, carnivals, and lots and lots of singing. In other words, I used to be in the thick of it. The Family Program operates more on the periphery, quietly making it possible for others to be there.
I talked to the director before we headed up for the week. “The hardest thing for the little ones to get,” she told me, “is that the campers always come first. It doesn’t matter how long they’ve been standing in line…if a camper comes along, they have to wait.”
This was going to be interesting.
When I told Sophie that this was the deal, that the campers always came first, she was a bit confused. She didn’t understand what differentiated her from the campers. “We’re going there to work,” I told her, “to help the campers have the best week ever.” I didn’t want to explain to her that it was a camp for disabled children. I didn’t want that to be the lens through which she saw the other kids.
“Can we make a sign for our cabin, Mommy?”
“What kind of sign?”
“I want you to write on it, ‘Campers First.’”
When we got to camp, we did just that in Arts and Crafts. I wrote the words and Sophie glammed it up with streaks of glitter glue. We hung the sign in the common room of our cabin where the children played and the adults would sit, comatose in the evenings.
Sophie became fast friends with a fellow 5-year-old family programmer, with whom she invented a game called “Princess to Princess,” the rules of which were ever changing and seemed to entail spending a lot of time in my bunk. Sophie seemed a bit disappointed the next day, when the campers arrived. As if they had invaded a private world she had created.
But she didn’t seem to notice there was anything different them. Not right away anyhow. Older children did. In the first hour that the campers arrived, we were hanging out in the rec hall—an all purpose room filled with sports equipment and wheelchairs that the kids were using to give each other rides. A camper-counselor pair showed up and passed a basketball back and forth. I said hello to the camper and introduced myself. Then, I encouraged the kids to come up and say hello. After saying a quick hi, one of my little charges turned to me and said to me, “What’s his disability?” We were still standing in front of the camper, so I led him quietly away. I didn’t want to shame him, but I wanted him to understand why what he asked could be hurtful to the camper.
“I understand that you’re just curious, and I’m happy to answer your questions,” I began, “but asking that question in front of the camper could hurt his feelings. No one wants someone to walk up to him and ask about what he can’t do.” Then I struggled with an explanation that would be age-appropriate. “He has something called Down Syndrome. He was born with it and it affects his brain so that he thinks and acts like a younger boy.” Before I could finish my sentence, he was already walking away from me. I couldn’t tell if he was embarrassed or done.
"Campers First" was somewhat more difficult in practice than it was in theory. On a day that a petting zoo came to camp, Sophie had been standing on line with other kids from the Family Program for a turn to ride a horse. A camper came up, and I told everyone to let him go to the head of the line. Sophie grumbled for a second, but she conceded.
I didn’t get any more questions for a day or so. Then, one evening, Sophia and I sat across from a severely autistic boy. He was refusing to eat, humming to himself, and flapping his arms. His counselor was young and looked frustrated. I offered to get his camper something different to eat. We tried a peanut butter and jelly sandwich, he slapped it away. Sophie looked on, uncertain. I offered to get a resource staff member, since I didn’t know the camper. The counselor gave me a grateful look, and I found Pam.
They decided the camper might be over-stimulated and led him to another table. Sophie waited until he disappeared before she asked, “Mommy, why was he acting like that?” It was a fair question. One, for which, I didn’t have an answer. I told her that his brain worked differently than hers. She didn’t ask for more of an explanation, but I wasn’t satisfied with my response. I was annoyed with myself for not having thought this through. How could I explain autism to Sophie that didn’t cast him as lesser or other? How do you explain a disorder to a four-year-old?
Another night, at dinner, Sophia was fascinated with another teenager with autism. “Mommy! He’s doing naughty things!” She told me gleefully. “He just spit!” She seemed to be less interested in his disorder than in his bad behavior, so I simply said. “Well he shouldn’t be spitting.”
I knew she was wondering why he was getting away with it, so I quickly added, “I really like your table manners, Soph. You are sitting and eating very nicely.” This was only half true. She was picking at her dinner and popping up every two minutes, but at least she wasn’t spitting.
As the week wore on, Sophia found one camper she connected with—Callie*—who came to the Circle Time I ran each morning. Callie was about 7 or 8 years old, she walked around in princess dresses and she liked to do the motions to all the songs.
In other words, they had a lot in common. Sophie seemed to be oblivious to the fact that Callie had Down Syndrome, or that she spoke little. Sophie was happy to do the talking for both of them. On the last day, Sophie and Callie sat by the flag pole, crooking their fingers into the shape of Little Bunny Foo Foo as others milled about singing, or flapping or suddenly shouting out.
It was exactly as I had envisioned.
*Names were changed to protect the confidentiality of the campers.