Not so very long ago, I had several opportunities to work with children of this age. One, a job through the university, was tutoring first graders in reading. The school was in the Pilsen neighborhood, comprised primarily of Mexican Americans. The neighborhood is colorful, with murals painted everywhere and old style below the sidewalk houses. The school on the inside was not much different than most public grade schools but was very well maintained. I was assigned to work with two or three boys who had some difficulty reading, and at times assisted other students. The teacher, a young woman full of enthusiasm, was very passionate about her work; she knew if children did not have a basic grasp on reading early on, they might never catch up.
Talk about life affirming! I experienced pure joy each time I first entered the classroom. Whoever spotted me first would shout my name and about half the class or so would come running up to me and hug me. I was embraced in a circle of waist high love. There is nothing, no about of money, that could replace that feeling.
As for Carlos, he simply did not want to try and he didn't care. He was a chubby, sad boy who wanted to play or draw. He was so withdrawn, I had to be extremely gentle and patient with him. It took some time but he did begin to respond and to make an effort. He clearly was starving for some type of attention. I could see him as a teenager – the kid who stays home, is antisocial, and plays video games.
Ben would always say to me “you are the best aide I ever had” and I had to correct him, “I am not your aide, I'm your companion”. Ben was in a wheelchair and had been and would the rest of his life. He had spina bifida. The goal for the special needs kids was to integrate them into “normal” day camp as much as possible. With Ben this took numerous forms: pushing his little wheelchair, helping him change clothes, helping him in socialize with other kids, explaining why he was different, and what about him was the same.
Ben was first and foremost a thinker. Actually I think first a foremost he was a kid who loved sports and playing, and had he been able he would have been playing kick ball and baseball and running around the playground with the other kids. It was perhaps the fact that he was paralyzed from the waist down that caused him to become more of a thinker, and a dreamer, than one would expect at that age.
His parents wanted him to have as normal a life as possible, and they attempted to treat him as if he were a normal kid. To a certain extent his made sense. But a day came when the boy looked at me and asked “why am I different”?
But I get ahead of myself. When I first saw Ben I had a chance to observe him in “class” (Tuesdays and Thursdays were Arts and Crafts, and the other three days regular camp (where there was games, all kinds of activities, swimming etc). I don't know why I should have been surprised at how delicate he looked; he had a thin face and body, and big eyes, dark blondish hair. He looked like a little waif – like a Tiny Tim. Perhaps that is why he seemed familiar to me. His voice was thin, too, with a bit of a squeak to it at times.
I introduced myself to him and could see he was a bit shy and uncertain how to behave around me. I told him “you know, I had an operation on my spine, and though I don't know what it's like to me in a wheelchair I was in body cast, and I know what it's like to have a crooked spine”. Honestly I didn't know if this would be a good thing to say but he warmed up a little. Then I said I had thought that we should tell the other kids about him right up front so he wouldn't have to answer a lot of questions over and over. questions. He liked this idea, and when I asked did he want me to do the talking,he said yes. So with the consent the teacher I explained to the kids that he was not injured, that he had been born like this, and that he could not walk, but he was OK, and there to have fun like everyone else. There were a few questions and he jumped in and answered them himself. The next day we did the same thing at the other camp. Though subsequently throughout the summer there were some questions from kids in other sections, it was not too difficult for him. It later turned out there were a few children from his school who knew him and helped served as a buffer from stares and questions. The main question from other kids: "is he hurt?"
My birthday is in early July, and I had told Ben that, since it was a weekday. By then he was already telling me I was the “best aide”, and on my birthday he brought homemade chocolate chip cookies. He had had his father make them.
There were a lot of times we were alone. For one thing he had diapers that needed to be changed, once a day at least, twice if he went swimming. He was not able to tell if he was wet , so we had a general schedule. I had to lift him from the chair – not an easy task for someone with a bad back (not to mention pushing that low chair, though he did at times wheel himself) but he was not that heavy and helped with his arms. He was always trying to talk me into skipping the diaper change; I know it emphasized his difference, and we tried to go into the disability bathroom when kids weren't looking. The child was clearly embarrassed. During the task we always talked and later, when rehearsing for the big end of summer show, sang, and he held my eyes to keep me looking at his face as much as possible. Anything out of the ordinary we made into a joke. We laughed a lot – and it became a special time.
Ben hated arts and crafts. His mother had signed him up for it. Me, I love all those little projects with clay and paint and Popsicle sticks, and I had a blast. I tried as much as possible to make it enjoyable for him, but he would get frustrated and often wanted me to do things for him. Once again, accommodations had to be made; we had a table that was lower than normal tables, so he could reach.
There was a time when my back was in bad shape, and I used my aunt's old cane to get around. I had a small taste of what living with a serous disability would be like. This was before I had gotten my driver's license (I had lost it during my drinking days) and just getting to the bus stop, much less getting up the steps onto the bus, was difficult. And I felt like everyone was staring at me. In a wheelchair, you have to take the long way around if the curb is high, when others are cutting across the grass you have to take the paved path, and when others are climbing and running in the playground you have to sit and watch.
That was an extremely hot and humid summer, and three days of the week I spent doing physical activity with no air conditioning. I think I was exhausted most of that summer. And I would not have traded that experience for anything.
Ben liked to play imaginary baseball. He was big Cubs fan and he knew the game well. While the others were off running around after lunch, sometimes he would lie on the grass and recite an imaginary game for me, with himself as one of the star players. He also loved to dance. On rainy days the kids would be in a big room in the grade school that was the camps's home base, and play games and put on music and dance. Whoever was still moving when the music stopped was out of the game. Ben would pop wheelies and spin himself around and around in his chair, steering the wheels in opposite directions. He would have this blissful grin on his face, and the other kids just loved watching him. Sometimes I would “dance' with him and push him around. His favorite songs were “I like to Move it” from the movie “Madagascar” and “Hey Now You're a Rock Star” from “Shrek”.
Ben loved getting out of his wheelchair and crawling around using his arms, playing with the other kids on the floor. Oftentimes his pants would come down from dragging himself along, and his diapers would show. I once heard a kid say “it looks like he''s wearing Pull Ups" and I gave that child a glare. Ben thankfully didn't hear, or he would have been mortified. After that I would discreetly yank his pants up whenever I saw them coming “down”.
He also liked to get physically close to me when he was out of his chair; he would often crawl over and snuggle next to me. There was the time he had gotten sick after eating a snack – perhaps a combination of heat and excitement - and I took him to our empty classroom where he wanted to just lie next to me and talk in the dusky quiet. That was the day he asked me if I had ever seen a shooting star. He wanted me to describe all the times I recalled seeing one, and what it was like. He had never seen one -- in fact, he said he was not allowed outside at night so he had rarely even the night sky.
Several weeks before the end of camp, he asked me why he was different. Of course I was unable to give him an answer. He said “it's not fair that I can't walk”. I said “you're right, it's not". I discussed differences between him and other kids, which were mostly physical, and then went on to talk about the ability to think and experience feelings, and how in those ways he was very much the same as everyone else. To his questions born of necessity, I applied what wisdom I'd gained so far. He appeared to find some solace, if not answers.
On our last day together we were both very aware that we might never see each other again. We spent a lot of time talking, and at the end of the day moved away from the others to talk, before parents dame to pick up the kids. We had done so much together: swimming in the lake, the pool, traversing hallways and pathways, sitting in the grass, dancing, singing, acting, talking....we had spent a small lifetime together.
Then there were Cheeto's. The puffed variety -- Ben loved them. On the days his mom put them in his lunch bag, he would take them out slowly and look at me slyly saying, “I have Cheeeeetos” dragging out the word. Then he would proceed to to eat each one, slowly and carefully, not allowing anything to distract him from his pleasure. It got to be a running joke with all the kids. “Ben's got Cheeto's”! they would shout and giggle. He confided to me he didn't want his mom to know how much he liked them, for fear she might not give them to him as much. That last day at lunch I pulled out several small bags of Cheeto's for him, thinking he could save some for later... but he ate every last one of them and his face was a happy orange hue.
I had two more gifts for him that day. One was a beaded bracelet I had made in craft class – I had made two, one for me and one for Ben. He said “so we won't forget each other?” I said it can be, but I know I will never forget you. During that last week, not only was he repeatedly saying he would never forget me, asking would I always remember him, and he finally acknowledged that I was not his aide, but his companion. The last gift I had for him was some simple print outs from the Internet, from a child's web site about astronomy. It explained some basics about the stars and space. This was the gift that made him glow, and he held those papers close to his heart. Then I told him about Stephen Hawking, the physicist/astronomer in a wheelchair, who cannot even speak but is considered one of the smartest scientists in the world.
His father took a photo of me & Ben that last day, and emailed it to me. I saw him once more, a month or so later, when the agency was looking for a substitute “aide” and I happened to be available. How wonderful, to see the look on his face when he got off the bus and saw me there, and the slight shyness, and then the joy as we talked and played. When his dad picked him up we talked about my visiting Ben over the holidays.
I emailed his father when it was close to winter holiday time, and he replied with approximate times that would be convenient, but after replying again I never did hear back from him. You just can't insinuate yourself in the lives other people's kids, unless they welcome you.
I think about Ben often – he would be ten now – and wonder how he is, and if he has not forgotten me. I know, like the little elephant, I will never forget. I learned a lot during my time in graduate school, but I believe he was my best teacher.
Hey now you're an All Star get your game on, go play
Hey now you're a Rock Star get the show on, get paid
(And all that glitters is gold)
Only shooting stars break the mold
(And all that glitters is gold)
Only shooting stars break the mold
– Smash Mouth