Not Always Happy

by Kari Wagner-Peck

  The upshot for me reading the email was Thorin’s thoughts and feelings were not important. I thought equating brushing teeth with learning a communication program that was as hard as articulating speech was a simplistic comparison to get what he wanted. The “why” of his defensiveness was difficult to understand.

  Both Ed Techs and Mrs. Holt shared with me privately they thought the program was too much work. They found it frustrating. All of them agreed Thorin needed more immediate help, but no one wanted to tell a decision maker that. Mrs. Holt also shared she could not do enough for Thorin.

  “I have so many children that I can’t work individually with anyone. Thorin is in a speech group, but that’s not enough.”

  “How do we do that?” I asked.

  “A lot of parents get an outside speech therapist; that way, someone can work with only him. He needs that.”

  A week later, he was going to a second speech therapist after school, twice a week. Thorin was motivated and excited to go.

  The demands of being an advocate at the school, helping my mom, and working were taking its toll. At the time, I felt like I was riding an endless wave. Sometimes, I was on top of it; other times, I was hit by it and held under. When my phone rang and I saw it was from the school—which was happening a couple times a week—I teared up, and my heart started racing. The usual compliant was Thorin wanted to come home because he was sick.

  In January, Thorin said to me, “Help me more. Come school.”

  “Okay. Thorin, do you know what the problem is?”

  “Yesith.”

  “Tell me, Sweetheart.”

  “It’s me.”

  “Thorin, you are not the problem . . .”

  “Yesith! Am!”

  I was trying to hold it together, “It’s them, Thorin.” I said it. It was true.

  We hugged each other for a long time.

  “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?”; “Does he have books?”; “What’s his favorite TV show?”; or “Does Thorin have a tie?”

  Mrs. Holt continued, “I have a program I downloaded for Thorin and some other kids, Pictello. He can tell a story about himself in class. On the program, you can upload photos and write text with it. He loves photos!”

  I talked to Mrs. Bruce who approved the presentation. We downloaded the program on Thorin’s iPad at h
ome and started working on the presentation. Ward, Thorin, and I had a blast putting together a story about Thorin. First, we made a list of what Thorin wanted the class to know: he likes helping Daddy cook; he likes the Avengers; he likes the beach; he has two dogs, Coco and Walt; he has a Bubba, an uncle, and an aunt; and he likes taking photos. Thorin took the photos for the presentation, and Ward and I helped him create sentences using his own words.

  As we were wrapping up, Thorin said, “Wait! One more!”

  He ran into his room.

  I yelled, “Do you need help?”

  “No! Stay!”

  After a few minutes, he came into the kitchen dressed in his Thor costume, including helmet and hammer. He grabbed the iPad.

  “Here! Here!” he said pointing to the camera. He pushed the icon for video.

  “Do you want me to video tape you?”

  “Yesith!” He took his place in front of me.

  “Okay, action!”

  He smiled and said, “I am Thor.”

  I stopped recording. “That’s what you want them to know?”

  He nodded his head and then danced around the kitchen.

  “Well, Thorin, I think that’s brilliant,” Ward commented.

  When Thorin and I went to the front of the class on the day of the presentation, he stopped me.

  “Can’t do it.”

  “Will you sit with me up here? I can do it,” I told him.

  “Okay.”

  I looked out at the classroom and said, “Has anyone ever been afraid of talking in front of a group?”

  Everyone’s hand went up, including Mrs. Bruce, who said, “I still get nervous teaching, Thorin. It’s scary.”

  Thorin looked up at the class and said in a quiet voice as he pointed to the screen, “I did this.”

  The presentation went off without a hitch. There was wild clapping at the end, then Mrs. Bruce asked for questions. The first one was from one of the boys.

  “Why can’t we do fun stuff like that? I want to tell my story, too!”

  “Thorin, why can’t you talk?” asked another student.

  Thorin hooked his thumb at me.

  “First, Thorin can talk, but sometimes it’s hard to understand him. He works really hard to be understood.”

  Another boy stood up and said, “I know why. My dad told me.”

  Thorin and I looked at each other. We both reflexively made a grimace.

  “Is this okay, Thorin?” I asked.

  Thorin smiled. “Yesith, okay.”

  The boy continued, “You have an extra cell in your body.”

  Thorin nodded his head; no more questions were asked. Thorin was thrilled at the response he received. He did the presentation later that week for family and friends.

  Thorin’s high was short-lived. He was up every night after the presentation. One night in particular, he couldn’t go back to sleep. We sat in the den, watching Don Knotts in The Incredible Mr. Limpet, eating popcorn, and drinking juice. I called my mom the next morning and explained what was happening. She offered a sage observation: “He got a little taste of communicating. It’s probably even harder now.”

  I surveyed everyone at school who had direct contact with Thorin about the communication device. It was not being used for its intended purpose—communicating with others—because it was too difficult to use and took too long to create a response. Instead, Thorin was inputting words from books in it. That sounded like busy work. Ward and I sent an email to Ms. Shay, the principal, his teacher, Mrs. Holt, and the Ed Techs.

  We are respectfully asking that use of the communication device be suspended immediately. Thorin expressed, again, after school yesterday that he is sad and mad. If we can reduce stress for Thorin, that is most important. Ward and I told Thorin he can take a break from using it, so let’s have that start today. If that is an issue, please notify us ASAP.

  Thank you,

  Kari and Ward

  The school staff listened to us. That night Thorin slept through until morning.

  Thorin’s outside speech therapist had to change one of his appointment times to 2:30 P.M., which was twenty minutes before school ended. I made arrangements with his teacher and had notified the front office that I was picking up Thorin early that day. When I pulled in the parking lot, I saw the vice principal standing where the school buses parked, holding what looked like a cell phone from the 1990s, which I think must have been a walkie-talkie. As I walked toward the building, I saw a few Ed Techs coming from the sidewalk that ran along the street. I went into the office. The principal stood next to the both receptionists; no one said anything to me. Then, the office door flew open. Two more Ed Techs and the lunch lady filed in.

  “Anything?” One of them said, then stopped short on seeing me. They all backed into each other with the last one squished against the closed door. One of the receptionists looked at me.

  “What do you want?” she said in an aggravated tone.

  “Um, I told you I was coming early for Thorin.”

  “Can you go get him?”

  “Sure.”

  “Okay, bye!”

  “Don’t I have to sign in and get a pass?” The week before, I was reprimanded for not signing in and taking a pass.

  “I’ll sign you in!” offered the receptionist.

  Then, the principal grabbed a pass and threw it at me. As I walked to find Thorin, I had the distinct feeling I had interrupted a posse. I got Thorin, and we went back to the office to return the pass and sign out.

  Only the receptionists remained in the office. Thorin sat down and picked up a book while I signed out and handed in my pass. As I turned toward Thorin, I saw David, the other boy with Down syndrome, walk into the school. Mrs. Mallory, Thorin’s former case manager, came around the corner as he walked into the hall. She immediately yelled in an angry tone at him, “I bet you thought that was funny!”

  Thorin turned in his seat, his mouth making a little O. She kept yelling at David. I turned to look at the receptionists who had their heads turned conveniently down toward the desk. I felt awful for David. Mrs. Mallory’s tirade seemed endless. I wanted to go to him. I didn’t; I wimped out. I took Thorin by the hand, and we left. As we were walking to our car, I saw a parent from the school. She was out of breath and holding her side. She looked like she was about to cry.

  “Hey, are you okay?” I asked her.

  “Oh! Have you seen a boy . . .”

  It wasn’t a posse I saw; I had seen a rescue party.

  “He’s inside! We saw him!” I told her.

  Someone—I couldn’t see who—yelled at the parent from the front door, “He’s in here!” Then the woman went running toward the school.

  I experienced firsthand a situation I found to be disturbing. A situation I could imagine happening to Thorin. And, I didn’t do anything; I was awful. I deferred to who was in charge. I did what I thought was the next best thing. I private messaged David’s mother: “I’m checking in about what happened at the school. Thorin and I were in the front office when David came back to the school. I wanted to run and hug him. If you want to call me, please do. Very scary.”

  She wrote back: “Thanks for your message. I appreciate it a lot. Yes, very scary. From what I understand, though, he never got out of the Ed Tech’s sight.”

  Her reply completely threw me. I wrote back: “I don’t think that version is true. Can we talk?”

  When we talked on the phone, I told her what I had witnessed. She said she would contact the school for more information and let me know.

  A couple days later, I discovered the parent who was so distraught as we were leaving that day was also a substitute Ed Tech. She had been David’s Ed Tech that day. He clearly had not been in her eyesight the entire time. I never heard from David’s mother; in fact, she and I never spoke after that.

  I tried to imagine some alternate scenario for what I saw, but nothing else made sense. Two other parents were intimately involved in what had happened, the Ed Tech
and David’s mom. Was I really the only one troubled about the school lying?

  I told Ward, “I don’t know what we should do.”

  “Kari, we can’t do anything. No one has a problem with it but you . . . and me, of course.”

  “But the principal and the others know I was there. They have to know I saw it.”

  “Exactly. If you end up dead, I will assume it was by their hand and direct the police.”

  There was a bright hope in one person at the school. Ms. Alice was actually teaching Thorin. She conveyed not only to Ward and me but also to Thorin that he could learn. She learned how to sign all the key words for phonics instruction, so Thorin could sign the word and say the word. She knew signing gave Thorin confidence and talking was a fearful proposition. The multisensory instruction made a huge difference in Thorin’s reading. Thorin had stopped reading at home. I think the discrepancy between what little they expected of him at school and the more accurate assessment of him at home was too much. After Ms. Alice’s learning intervention, Thorin began pulling out books at home.

  I received a lovely email from Ms. Alice recently. She was shocked I would credit her with so much of Thorin’s success. She shared that he made her a better teacher and other students continue to benefit when the phonics instruction is delivered using the multimodal approach she learned with him.

  Now that Thorin’s reading seemed to be moving forward, his communication needs had to be addressed. Mrs. Holt, the speech therapist, agreed to meet with me when I talked to Craig Joyce about using a more effective and accessible device. The district finally agreed the device was not suitable but couldn’t give Thorin a new device because it was in the IEP. In preparation for the meeting, I had done research on the program. A major criticism is that the learning curve is three to four years. This application, as suspected, was never appropriate for Thorin’s immediate communication needs.