“Thorin, I will come to school. I’ll volunteer.”
“Good! Now?”
“As soon as possible. I promise.”
Mrs. Bruce said I could help at reading time. In the classroom, I was instructed to sit in a little area with a rug and a bookcase. The children rotated from different stations in the classroom. The first group was interested in my demographics.
One boy sat next to me and asked, “You’re Thorin’s mom?”
“I am.”
“How old are you?”
“I’m old enough.”
They all laughed. It was fun listening to them read. Thorin never made it over to my station before I left.
In the hall as I was leaving, an older boy who I did not know said, “Thorin hit me.”
“I don’t believe you!” I said, not breaking stride.
A stranger, a boy from an upper grade, saying that threw me. How far had Thorin’s reputation migrated from his classroom? Had the boy noticed Thorin at the bad boy table? If Thorin had hit him, had the boy teased Thorin? Or, done something to warrant Thorin retaliating? How did the boy know who I was? As I sat in my car, I thought about my days in social work and the term identified patient, or IP. The IP was the person in the family who was the scapegoat for the dysfunction of the family. The term could be applied to any system where there is dysfunction, confusion, and denial. Thorin was the IP at school. If they could just get him to be different, everything would be better.
I started becoming anxious about one thing in particular: getting disruptive behavior disorder removed from Thorin’s medical record, which had been diagnosed by Dr. Rachel the previous year. I found other people’s obsession with his behavior pathological. And, it wasn’t just about Thorin. According to the National Down Syndrome Society website, “at least half of all children and adults with Down syndrome face a major mental health concern during their life span.”
Five out of the ten common mental health concerns listed for people with Down syndrome were behavioral. What if part of the issue was with the evaluation of people with Down syndrome in general? If we, as a culture, mistreat individuals by not including them and demeaning them, then they might not behave to our liking. What if people with Down syndrome were society’s identified patient? If only they would stop being so upset at how they were treated.
I thought of Ethan Saylor, the man with Down syndrome who had been killed for refusing to leave the movie theater. Some reports cited he had a history of getting “upset” when he was touched. The reporting didn’t specify what upset meant. I was also troubled that touching was equated with being manhandled by three aggressive security guards, and the fact it was considered noteworthy in the news coverage seemed to imply Ethan’s Down syndrome had contributed to his death. I had seen how Thorin’s behavior had contributed to him being identified as difficult rather than a victim of his circumstances.
Ward agreed with me about Thorin’s diagnosis being a roadblock, so we made it a priority. After two meetings with Dr. Rachel and her consulting with the staff director at the clinic, Dr. Rachel was able to remove the diagnosis. She was understanding and compassionate and agreed his problem was the communication barrier rather than a behavioral problem. Thorin was not aggressive. She also helped us understand her point of view: “We work in the confines of a medical model. We aren’t rewriting the historical treatment of people with Down syndrome, which has been abysmal. The problem lies with the person. That’s the medical model.”
On one of my volunteer days, I saw Thorin was ahead of me in the hall. I was going to catch up to him when I saw a boy come up to him and say something. Thorin stopped walking. He looked at the boy and shook his head no. The boy grabbed Thorin by the shoulder, causing Thorin to pull away and wave off the boy. Then, the boy slapped his thigh like he was calling for a dog and said, “Here, Thorin! Here, Thorin!”
I reached them quickly. Thorin ran. I turned to the boy.
“Don’t ever do that again.”
“What?”
“Don’t even look at him,” I said as I went to find Thorin.
Because Thorin and I didn’t know the boy, nothing could be done. I made the case for better observation at an informal meeting with staff.
“You seem to know everything Thorin does, maybe you need to start looking at the other children more,” I told his Ed Tech, Mrs. Shelby.
“He’s the worst.”
“Really? Thorin is the worst behaved child in class?”
“Yes.”
Since volunteering, I saw several children misbehave. There was one boy who couldn’t sit still and roamed the room, stopping to look at books or what other kids had on their desks. The teacher constantly had to ask him to sit down. The boy also talked loudly during class and interrupted the teacher and other children on a regular basis. The boys, in general, were very physical, whether it was chest bumping or hard slaps for high-fives. I saw one boy start to cry after a particularly rough hit. I witnessed one girl insist Thorin high-five her. He said no, and when that didn’t work, he turned his back on her. She grabbed him by the arm, turning him back to her, and said, “You have to do it, Thorin!”
No one else seemed to see these things. Were they so intently focused on Thorin? I started wondering if the Hawthorne Effect was also at play. Thorin knew he was being watched. Was he modifying his behavior in response to being observed? I decided to talk to Mrs. Holt.
“Kids can be awful! Thorin is not the worst anything. This communication piece is holding up his progress. He needs to connect with the other kids,” she said.
I nodded. She had a point. When I volunteered, the children often asked questions about Thorin: “What’s his room look like?”;
