I can still remember holding an infant Teddy in my arms and thinking determinedly that he would never be institutionalized, and never be in segregated special education. When I was a teenager, I had volunteered at a large residential institution for children with disabilities and the horrors I watched inflicted upon children words cannot describe. The staff provided only essential care, and that was given as quickly and remotely as possible. These children only existed to live each day exactly as they had the day before – without dreams for any kind life among people who loved them. I had dreams for Teddy, and I wanted him to have dreams for himself.
I soon came to think Teddy would benefit from special education early intervention services. He could receive excellent play, occupational, speech, and physical therapy at a school for very young children with disabilities.
I reconciled myself to early intervention partly because this was the only way we had access to services. But, what I believed more important to Teddy’s development than early intervention was friendships with children in the neighborhood. Happily, Teddy had easy access to friends, since I had run a family day care home where I provided part time childcare. Each day a group of children settled in for a morning or afternoon of play. The Teddy I saw at school and home was similar to the one at home, but the Teddy at home was far more playfully interactive with other children.
Teddy surprised everyone by becoming potty trained by twenty-three months. Potty training was not even on the agenda for the children at Teddy’s school, but it was very much on the minds of the families whose children came to our house to play. Once the first child became potty trained, it was like a game of dominoes, with Teddy the final domino to fall. It hadn’t even occurred to me that Teddy was ready to be potty trained, but he obviously took his cues from his friends, not the special education experts.
When Teddy and I moved to Michigan, he was almost four. I did not want to run a family day care home, and hoped that Teddy might be able to go to nursery school and I could go back to work teaching. I found a cooperative nursery school that would accept Teddy in their two-year-old class on Tuesdays and Thursdays. On Monday, Wednesday, and Friday morning he could attend a class for children labeled “pre primary impaired.” This did not give me time to work, but it did allow me to spend a lot of time helping his nursery school learn that Teddy was more like the other kids than he was different. Teddy’s acceptance by his friends at school was immediate. It was amazingly easy.
Sue and her son Philip became our closest friends and allies as we took the next step in school. This friendship extended well beyond school. Teddy fondly remembers playing in the basement with “ Phili-up” and his sister Elizabeth playing card games like Go Fish and shooting baskets and I depended upon Sue for childcare.
After two years of success in preschool among kids without disabilities, I wanted Teddy to go to kindergarten. But, I did not want him to go to special kindergarten; I wanted him to go to kindergarten at the local school where Philip would go.
All summer I made preparations for Teddy to attend the local school. I could be extraordinarily assertive about what I wanted for Teddy, because whenever I would falter I had the backup of foreword thinking advocacy organization that is now called Washtenaw Association for Community Advocacy (WACA.) My commitment and understanding of inclusion magnified as each day passed. Everything seemed to be going well when I attended the Individualize Education Planning meeting that would steer the course for Teddy’s first year at school. But everything went wrong. The promises the school administration had made were empty: instead of a kindergarten class we were offered a spot in a mixed kindergarten through fourth grade class. Not only was I sure that adding a very young Teddy to such a wide age range was asking for disaster, but the teacher in this classroom was the one who seemed least pleased with the prospect of a special ed child in her regular classroom. I sobbed out of control during the meeting.
We reached a compromise; Teddy would attend the local special ed kindergarten in the morning and regular kindergarten with Philip in the afternoon. If Teddy were successful in regular kindergarten, he could continue in regular school starting in first grade.
From the start I accepted this plan under duress. Was it fair for Teddy to be evaluated on the basis of how well he did during the second half of a kindergarten day twice as long as his peers experienced? Why was success considered Teddy’s responsibility and not the responsibility of the school to ensure? Why was Teddy’s success measured against other children and not on the basis of goals that made sense for him?
Teddy began his first day of school with newspapers chronicling the event. A photograph of his friend Philip and Teddy together on a playground slide represented the first day of school in Ann Arbor that day. Little did anyone know then that what seemed such an unusual event in 1989 would become commonplace less than a decade later.
The girls in kindergarten seemed to take to Teddy the easiest. This would prove to be true every year: the girls seemed generally more willing to appreciate Teddy for his differences. Each year Teddy would establish a special friendship with a few children in class. Often it would be the girls or boys who were having the most difficulty with the academic material that took on the role of mentors: helping Teddy appeared to help them. One year Catriona’s mother made a point of telling me how much happier and more successful her child was in school now that she was helping Teddy. Cat evidently discussed every success of Teddy’s as if it were her own.
Each year Teddy also had a teachers’ aide. This person was an extra hand to help out in the classroom however needed, but was also primarily responsible for Teddy during the times he needed special assistance that his peer, or his teacher could not provide. Although Teddy’s teachers changed each year, Eric was his aide from the middle of kindergarten through fifth grade.
Having Teddy included in regular classes as he grew older worried me. I wanted to believe inclusion – as it came to be called – would work indefinitely, but I had my doubts. The Washtenaw Association for Community Advocacy never let my doubts become too overwhelming and was always there to point out how my fears and insecurities were groundless. I had a particular difficulty with a fourth-grade world history unit and could not imagine how Teddy would participate. Teddy did not understand he lived in a country called the United States, what would he understand of world history?
Teddy surprised me by what he learned. He pointed out blue lake masses and river lines on a globe we had. He knew where the United States and Michigan was. He knew it was oceans that separated the different colored countries. He knew which way was right side up on a map and that the colored lines were roads. I am sure the other children in the class learned many more facts than this, but this was what Teddy took from these lessons as being important to him. And these were lessons he would have not been exposed for many more years, if ever, had we gone the traditional special education route.
During the summer before seventh grade Teddy and I moved to England. Living in the United Kingdom was more foreign than I ever expected it to be. While I found the community at large accepting of Teddy, the only school open to him was the Alderman Jackson School. The classroom Teddy became a part of for a short time was for children between the ages of 10 and fifteen with disabilities. It did not matter what the disability was, or what special services the child might require, all the children stayed together in a classroom. Teddy complained each day he had a headache, and was often bruised from being hit, but enjoyed a friendship he developed with a child who had significant physical disabilities and shared with Teddy his love for computer games.
Rural England had few services for people with disabilities, but we did not need them. The small community opened their hearts to Teddy without hesitation. Teddy had his first job in Norfolk. We lived next door to a fish shop, and they asked Teddy if he would like to cut the parsley up in a blender each morning. At seven, Teddy would rise without reminder, dress in a shirt and tie and go next door to work for an hour before the shop opened. Teddy loved the notoriety of having a job. He also loved that he could shop for me. He could take the market basket and with a picture list in hand, shop for a small number of items I needed for the night’s dinner and put the charges on account. Teddy celebrated an unusual birthday party in England. We posted an announcement of his party in the town square, and I was surprised by how many people of all ages came, some of whom I had never met before. Over time it was evident to me that England was a good place to live for us, but immigration was not so simple, and we returned to the United States.
We set foot in Grand Rapids, Michigan where we would live for a year while I completed a second undergraduate degree. I presented Teddy to the local school administration to register, and we were told in no uncertain terms that inclusion was not an option. I insisted a segregated special education class was also not an option, and Teddy would attend college classes with me. Teddy loved my classes and proved the value of inclusion in the most unexpected way. One of the classes I took was statistics. Teddy could not count past ten: surely there was nothing he could learn in a statistics class. Teddy copied the board each day and would pretend to do homework with me. After awhile I realized Teddy had made sense of graphs. He would create colorful graphs and then explain to me what they meant. Although his graphs often appeared nonsensical to me, he consistently told everyone they meant the same thing. He could appreciate the idea of an x or an n as being “ a big secret, mystery you can’t tell, maybe later.“ He described the lines that went up as “more good,” down as “not so good.” and flat lines meant “ doing nothing.” Who could have imagined this child would have any understanding of statistics from a college class?
From Grand Rapids we moved to Syracuse, New York, where inclusion was the norm.
I went to the special education administration office expecting a fight about inclusion, but received none. Teddy began school the next day. Inclusion in Syracuse was not as all-inclusive as inclusion in Ann Arbor, but no less effective.
Teddy began his day and periodically returned to a special ed homeroom. He took a variety of classes and in each was welcomed by his classmates. Teddy returned home each day to regale me with stories of his friends at school. “India has a boyfriend, but I don’t know him, so I be India’s boyfriend.” “Sarah and me went to art and did drawing and coloring.” “ Emily walked with me all around the building for exercise” He showed me work he accomplished with the help of a buddy in class that amazed me: an essay about Britney Spears, a list of values important to being a good parent, an itemized healthy meal using the food pyramid, a detailed diagram of the body with each part labeled.
Summer camp was not so easy. The first year I wanted Teddy to go to summer camp I was up-front about Teddy’s disability and none of the camps I thought would meet Teddy’s needs were interested in him as a camper. The next year I was less up-front and only let the medical reports tell the story after I had already paid the fees and he had been accepted. The fees were returned with an apology that they did not have the staff available to help Teddy. The third year I was devious. I paid the fees and claimed to have mislaid the medical forms. I promised to bring replacements to the first day of camp. In line awaiting check-in, I was taken aside with concerns that Teddy was the camper being signed in. I professed some innocence regarding their concerns. It was finally agreed that Teddy could stay two days, and if he managed camp OK he could stay, but if not, he had to go home, and I forfeited the two-week camp fees.
I left Teddy at camp waving and happy to see me go. A group of young men who initially seemed a bit standoffish encircled Teddy and led him back to the campfire circle. I paused immediately after he was out of sight waiting for what I thought would be the inevitable tears and running into my arms. It didn’t happen. I walked further and found a chair near my car. I pretended I was just enjoying the scenery, but I still was not ready to leave Teddy behind. I was the last parent to leave camp that day. I drove to the exit of the camp and pulled over in the car and cried. I cried not so much because I was leaving Teddy, but because I was happy he was content, and I was sad that I had made a deal to keep him there. I was so tired of always having to make compromises and deals to give Teddy access to the same things other people took for granted.
I called two days later at the appointed time and there was no answer. I kept calling until I finally received an answer two and half hours later. I was panic-stricken thinking something had gone awry, but my call had been forgotten, and Teddy was doing fine. He was doing so fine that they unhesitatingly agreed he should stay for the full two-week period.
Two weeks passed without a panic call, and I looked forward to seeing Teddy, but Teddy did not look forward to seeing me. He was crying: he did not want to go home. I considered letting him stay, but realized that I was planning to be out of town and would not be able to pick him up on Sunday noon as woudl have been necessary. Tuesday was the earliest I could retrieve him. From a probationary two-day stay, Teddy ended up going to camp for three weeks and two days. When Teddy was finally set to go home, he had so many tearful goodbyes to make. He refused to go home with me. Fellow campers pushed Teddy into the car, and stood where he couldn’t open the door. We drove off with Teddy refusing to look at me with tears running down his face while telling me he hated me. It was a very long two and a half hour drive home. Suddenly at home the dam burst, and a flood of excited talk about camp ensued. “ Andrew helped me make a rocket and it flyed.” “Somebody put the flag up and we watch it go and cross our heart and talk and sing about the flag.” “We ate bad chicken, but the macaroni and cheese was so good.” “Boys throw the food, and I was afraid and I didn’t do it.” “ I ate marshmallows we cooked in the fire.” “Rainy and cold and I was shaking in the tent and my friends helped me get warm.” “ I got kissed by a girl while we were swimming and it felt good.” “ Sometimes I got tired and took a nap, and the big guy (camp counselor) had to blow a whistle to tell me to wake up when it was time to eat.”
Teddy has a truly exceptional ability to fit in well whereever he goes, and yet we always struggle to accomplish the first steps of joining any new community, be it school, summer camp, neighborhood, social event, or entertainment venue. Too many times I have had to cajole our way through front doors other people walk through without hesitation, like a Disneyland ride Teddy was old enough to ride, but they worried he couldn’t handle the excitiement. There have been countless ocassions when we have felt a chill in the room or seen eyes averted as we enter somewhere we have every right to be. But, it never fails, wherever we go and whatever we do, that someone takes me aside to tell me how impressed he or she is with something they observed about Teddy. I only wish we could someday seamlessly fit in without it seeming so unusual that a person with a disability like Teddy fit.
Next chapter: Boys will be Boys