Nyla* came into our Head Start classroom wheeled by her special aassistant and surrounded by three early intervention (EI) specialists. I could barely see her for the equipment, adults, and silence that encapsulated her.
Nyla had “severely involved” cerebral palsy. In addition to muscle dysfunction, she had orthopedic impairment, vision impairment, and was medically fragile. Her “feeding regimen” and “handling regimen” both involved technical training.
I was completely overwhelmed. My Head Start class had just merged with the early intervention program. It was 1992, and we were embarking on our first experience with inclusion classrooms, and although Nyla’s special assistant and her three EI specialists had all been through the necessary training, I was one of her classroom teachers and I was intimidated.
Realities of Inclusion
The model we developed for our newly formed Head Start service was to merge the traditional “handicapped preschool,” which had been serving all of the children ages three to five with disabilities, with typically developing low-income Head Start children, also ages three to five.
The special education teachers and the early childhood teachers merged into a classroom team of four to plan for and address the needs of all the children.
I mostly loved the idea of inclusion. I had been struggling to teach about diversity and social justice in a northeastern corner of Oregon where there was almost no racial, linguistic, or economic status diversity. I thought including kids with disabilities in our classroom would help the preschoolers make meaningful connections with people who are different from them. I had no clue what we were getting into.
After the second week of school, I have a tradition of spending the weekend thinking of each child in my class. I review what I learned about them, what I want to learn more about, and the ways I am beginning to feel connected to them. When I thought of Nyla, I drew a blank: a blank instead of a child with an emerging story, instead of a smile or a funny anecdote. I was surprised at myself, mad at myself, disappointed in myself. How could I have a child in my classroom for two weeks and not have one story or even an irritation to reflect on? What was this really about?
Then I had a memory. The summer I turned five, my family went on our annual family vacation to visit relatives in Colorado. We went to the nursing home to see my Great Granddaddy Greenwell. We had on our church clothes. It was hot, and my brothers and I were grouchy about having to dress up. Almost 50 years later, I can still remember the odor when we walked through the doors of the nursing home. We hovered in the hallway and eventually saw a nurse wheeling Great Grandpa toward us. He was a tall man, more than six feet, but in the wheelchair, he looked old, very wrinkled, and very scary to me. And he smelled even worse than the hallway. As the only girl child in our family, I suddenly became the designated representative. “Go hug Great Grand-daddy Greenwell,” someone said. I took one trembling step forward and then whirled around and ran toward the door.
Recalling that memory, it struck me: That was the only close encounter I had ever had with a person using a wheelchair in my entire life up to that point. I was avoiding Nyla because I was afraid. It may sound odd, but once I realized this, I knew what to do. I had faced fears before.
On Monday morning, I went into the classroom and told the early interven-tion team that I wanted to take both the handling and feeding trainings for Nyla’s caregiving. I completed both of those, but I had serious doubts when they introduced the feeding topic by telling us how many children had died in feeding incidents the prior year. When I was approved for safe caregiving, I asked the specialists if I could get Nyla out of her wheelchair and hold her for circle time. They were hesitant because this was not standard practice but decided we could try it.
As soon as I had Nyla in my arms, my relationship with her began. From that day on, for circle time, Nyla was either in my arms or in her “corner chair,” which put her on the same level as the other seated children.
As soon as I changed my behavior and began a relationship with Nyla, the other children began to see her as a classmate. I have never had a clearer lesson about the power of the teacher as a role model.
Our class talked often about all of Nyla’s equipment. The kids were really interested in her wheelchair and all of the equipment she used. We all talked together each time she used a different piece of equipment or if we were going to try to make her safe and comfortable on any of the traditional “toys” like the wagon and the wheelbarrow. And because holding her involved keeping her muscles supported, we looked at the ways her wheelchair and other pieces supported her muscles, including her footrest.
We began to address the ways her equipment got in the way of her connection to the other children. I started asking questions like, “Can’t she be at the table with everyone else?” “Can’t she stay in the room for this exercise and invite other kids to join her?” “Can’t she ride in the wagon or wheelbarrow instead of the wheelchair when we play outside?”
Sometimes those questions led to my education about her fragile muscle system. Other times they led to the EI/special ed team’s education about the value of Nyla’s relationship to the other children or to play. These conversations and experiences transformed us all.
After learning how to integrate Nyla and other special-needs children into the classroom community, we found that our inclusive classroom provided opportunities for students to question and address things that are unfair in the world.
For example, we ordered a set of rubber people dolls for children to play with in the dollhouse. We were all excited when we found the Lakeshore Learning Materials Company sold dolls that represented people with disabilities. When the toys arrived, we brought the boxes to circle time and opened them up together. Joshua unwrapped a man in a wheelchair. He exclaimed, “Here he is, the guy with the wheelchair just like Nyla’s.” Josh passed the doll around the circle and when Mikey got it, he said, “Wait a minute. There’s a problem. This guy’s feet don’t reach the footrest on his wheelchair.”
Sure enough, there was about a half-inch gap between the guy’s feet and the footrests.
Another student said, “That would make his legs really tired, if they couldn’t rest.”
“What could we do about this problem? How could we make this work?” I asked.
“Let’s look at Nyla’s chair and see how it works first,” said Mikey.
Then another child shouted, “What if we make a wood block to put in the hole between his feet and the foot rest?”
Several kids went scurrying over to the woodworking table and grabbed small scraps of wood. We were eventually able to craft a little wooden filler for the gap. The children were delighted with their invention and very pleased that the “guy” now could sit comfortably in his wheelchair.
I wanted to take things one step further, so the next day I asked the children, “Do you think we should tell the company about the problem we found with the guy’s wheelchair?” They all agreed that we should. I set up our flip chart so I could write down their ideas. “What should we tell them?” I asked.
“Tell them it’s stupid to make a chair that doesn’t work,” said Josh.
“Dear Mr. Lakeshore, that’s a bad wheelchair you made,” added another child.
“How about making better wheelchairs for kids to play with?” someone asked.
“We’re not paying for this wheelchair because it’s broke,” Marisa declared.
Nyla was there in the circle, and although she did not have any formal expressive language at that point, she showed her excitement by squealing.
Eventually we wrote a letter to Lakeshore, saying we thought they made a mistake. We sent them a picture of our redesigned wheelchair and asked them if they knew how uncomfortable their wheelchair would be. We also said that we would not be buying more Lakeshore toys until they fixed this problem. We all went together to the post office to mail the letter, Nyla leading the way in her wheelchair with Mikey, the proud young engineer, helping to push her.
By the way, we never got a response from Lakeshore, but they have now fixed the gap problem with the wheelchairs.
Another day, our class started out on a field trip to the local feed store. It was a trip we had made the year before and loved. When we arrived, I had the horrifying realization that Nyla would not be able to visit the second floor, which had all the great farm tools. (This was part of our machines study.) I gathered up the children and said, “I just realized that I made a really big mistake. I forgot that this store does not have wheelchair access to the second floor.”
I was going to ask the children what they thought we should do when one of the children interrupted me and said, “No, Katie. The store guy made a big mistake. He didn’t think we would be friends with Nyla, but we are. And we’re mad, because if she can’t go, we’re not going.” Needless to say, we wrote another letter.
Nyla’s Best Friend
In the process of developing the inclusion model, there was a great deal of questioning and, in some cases, trepidation on the part of parents. Nyla’s mother, in particular, had expressed concerns about Nyla leaving the “handicapped preschool.” She was used to working with the EI team and reluctant to have her daughter in a Head Start classroom. She wondered how Nyla’s needs and safety could be ensured with so many other children in the classroom. And she wondered how Nyla’s classmates would respond to her.
We were not always able to answer these questions to Nyla’s mom’s satisfaction. After about five months of indecision, she decided to pull Nyla out of the program. When we could not talk her out of her decision, I asked that we at least have a few days of closure and time for the children to say their good-byes. It was a very hard few days.
On the last afternoon, Nyla’s mother came to pick her up and we were finishing our “good-bye circle,” where the child who is leaving sits in the middle of the circle and we go around with each person taking a turn saying what they like about the person and what they will miss when they’re gone. It is always both a heart-warming and heart-wrenching ceremony. This one was particularly wrenching.
Andy, a student who had overcome initial fear of Nyla’s differences, got up from his seated space, knelt by Nyla and said, “Nyla, you are my best friend. I love you and I don’t want you to go.” I heard the classroom door close and when I looked up through my tears, I saw that Nyla’s mom was gone. One of the other teachers came over to me and whispered, “She has changed her mind.”
Later, Nyla’s mom told me that in her wildest dreams, she had never believed that Nyla would have a best friend. And she was moved to see a whole classroom of children welcoming her daughter into their community.
I made important discoveries in those first years of working in an inclusion classroom. By facing my own fears and connecting with Nyla, I became a better role model for my students, who quickly grew to love and accept her. I realized that solidarity is something we can nurture from the youngest ages.
*All students’ names have been changed.