Not Always Happy

by Kari Wagner-Peck

  “Hey get out here and see this! They keep repeating it.”

  We stood side-by-side in the den, watching what was being touted as an inspirational story. A teenager with Down syndrome, who was the ball boy for his school’s basketball team, was allowed to play as the game was winding down. A member from the opposing team threw him the ball during the game. That was the whole story.

  “What do you think?” Ward asked.

  “Well, he knows the kid shouldn’t have thrown the ball to him.”

  “Yes! And what’s up with letting him play? Like they did him a favor.”

  “They feel sorry for him. Why’s that news?”

  “Pity is trending today, I guess.”

  We both noticed a couple Facebook friends of ours had posted the story on their newsfeed. I wondered if pity would be good enough for their children rather than the genuine experience of being included as an equal. I reached out to those friends on Facebook, explaining how Ward and I saw the story. Both exchanges were terrific—they understood what our concerns were for Thorin and deleted the post. I also wondered if I would have found the story inspirational if Thorin wasn’t our son.

  To help process my thoughts, I wrote about it on the blog. I suggested to my readers that these types of stories seemed to suggest that when those of us without Down syndrome demonstrate some little speck of contrived humanity to people with Down syndrome, we deserve to be applauded for our efforts. I wanted so much more for Thorin. In the grand scheme of what we have to offer each other as human beings, these acts were crumbs.

  Given work commitments, Ward had stopped writing on the blog in 2010 while I had continued. I still wrote storytelling posts about our family. I also wrote about my political awakening through not only Thorin’s stories but also the stories of others.

  One story in particular sickened me and hit hard at my greatest fears for Thorin—being victimized. On January 12, 2013, a young man named Ethan Saylor had been killed by three off-duty sheriff’s deputies moonlighting as security guards at a movie theater in Maryland. Ethan had Down syndrome. He refused to leave the theater when the film he saw ended; he wanted to watch it again. The three men brought him violently to the ground, then they restrained him by his wrists and ankles with a third set of handcuffs used to connect the other sets. They laid him on his stomach, and he died of asphyxiation. The position in which he was detained was not allowed by law enforcement because of the probability of death.

  My heart pounded, and I felt anxious as I hit publish on my first post about Ethan. I was Thorin’s mother writing about another mother’s son. In that post, I saw Ethan’s death as a human rights violation. I questioned whether they would have responded likewise to someone without Down syndrome. Clearly, there had to have been an alternative to killing someone over the price of a movie ticket. The press coverage I read seemed to blame Ethan’s Down syndrome for his death rather than a homicidal overreaction by the three individuals who killed him. Another author suggested that people with Down syndrome are predisposed to being stubborn. He contended Ethan might have contributed to his own death by responding in that stereotypically Down syndrome manner. I found that reasoning to be repugnant and victim blaming.

  Ward and I had both heard that children with Down syndrome were stubborn. We heard that from professionals and regular folk, including parents who had children with Down syndrome. Even Lo-Lo had asked me once.

  “I’ve been reading about Down syndrome because of Thorin. Do you think he’s stubborn?”

  “I think I’m stubborn.”

  She laughed. “I don’t believe it either.”

  “I think Thorin processes information slower than I do, so his reaction time is slower than mine but close to the same rate as Ward. I know I look like a whirling blender to them.”

  All together, I wrote three posts on Ethan in March of that year. In each, I challenged the mainstream’s take on his death and also the position of some of the national Down syndrome organizations. It was being written off by most as a misunderstanding with entirely too much sympathy given to the officers. At the time, I was delving into Twitter to share my posts, moving beyond my blog. A communications person from the Special Olympics contacted me to compliment me on my writing and added me to a list of disability advocates. He also shared with me it was Lawrence Downes, from the Editorial Board at the New York Times, who had recommended my blog to him. As I read that private message alone in our dining room, I started yelling. I had a fan who worked at the New York Times! I soon connected with Downes via email, and to this day, he remains a valued champion of my writing.

  As fearful as I was about sticking my neck out, I knew I must be on the right track.

  Ward and I had attended another conference geared for parents of children who had Down syndrome. The revelation at this one was augmentative and alternative communication (AAC) systems. We didn’t know there were applications used on iPads that helped people communicate. We talked to the presenter afterward, and she recommended the Proloquo2Go application; it was easy, and children found it fun. She thought it would be a great bridge to talking in the same way signing had been. We purchased the software and an iPad, the mini version, for Thorin.

  Thorin used Proloquo2Go on his iPad at home for communicating if he got stuck or if he was trying to explain how he felt. It also came in quite handy when I got a call from the school that Thorin had tried to bite a classmate. Given that he still didn’t have his front teeth, the extent of the damage was a little wet mark on the girl’s jeans. What the teacher told me was from the girl’s point of view, but I needed to hear Thorin’s side. Using the program, Thorin was able to tell me the girl was “mean,” “happy,” and “smiling,” which made him angry enough to try to bite her. It took me a minute to realize he had described teasing.

  “Thorin did she say or do anything that bothered you?”

  “Yesith!”

  “Can you show me what?”

  “No, can’t.”

  “Thorin I want to help. Did she say something or do something?”

  “Say.”

  I tried moving forward, but he was stuck on how to tell me what she said. I pulled back as he got more upset. I was convinced there was a rationale for his behavior. I told him if someone bothered him, he should walk away and get help from an adult. Biting was not okay.

  Ward and I realized that Thorin’s classmates might not know anything about him except for his behavior and his Down syndrome. He had stopped participating in show-and-share soon after the school year started because he was frustrated with not being understood. I asked Thorin if he wanted me to go in with him to do a presentation about himself for the class using Proloquo2Go. I got an enthusiastic, “Yesith!” I made arrangements with Ms. Charles who was thrilled.

  Thorin and I rehearsed our presentation in front of Ward. Thorin decided which buttons he would share—name, birthday, sister’s name, dogs’ names, and friends’ names. He also wanted his class to know he liked flying in airplanes. After rehearsal, Ward clapped and gave Thorin feedback: “Great, Thorin! Have fun tomorrow!” As for me, he suggested Thorin and I not dress alike for the presentation.

  The afternoon prior to the presentation, I had to fulfill my duties as a parent volunteer in the computer lab with Thorin’s class. I found this volunteering much more rewarding than the committee. Being around twenty-one kindergartners who do not have Down syndrome made me realize something I already believed but did not always know: Thorin is not that different.

  Ms. Charles gave strict instructions as she left me alone with half the class: “Everyone, only do math games on the computer.” Other than a boy dressed in a sweater vest and tie, they all logged on other programs. I tried to sound cheerful and fun, “Did you hear Ms. Charles? Only math games, right?” For my efforts to stick the rules, students rolled their eyes and gave not-so-subtle side glances to each other.

  One little girl asked sweetly for my help. I sat with her, feeling ever so helpful. But, I quickly r
ealized she must have drawn the short straw to distract me while several of the others goofed off playing non-math games. I was betrayed.

  I was also treated to the most unrepentant farting, ever. They were all farting with impunity. One kid’s atomic fart prompted me to ask, “Say, do you think you have to go to the bathroom or something?” But what I wanted to say was “Dude! Did you just shart your pants?”

  Interacting with Thorin’s class also helped me figure out which girl Thorin tried to bite. In the course of ten minutes, a couple kids almost punched her, and three kids moved away from her. She absolutely did not deserve to get saliva on her pants leg, but I did want to warn her things would be much worse at the women’s correctional facility later in life.

  I finished my computer lab duties and headed to Thorin’s classroom. As Thorin and I sat next to each other, waiting to be introduced for our presentation, I whispered in his ear.

  “I’m nervous!”

  “Me, too!” he whispered.

  The Star of the Day, Ferrell, walked to the front of the class with us. Ferrell placed the iPad under a document camera that projected it to a screen. Thorin hit the first button. The computer-programmed boy voice said, “I use an iPad to talk.” The room erupted in squeals of excitement. Thorin ran through the repertoire pretty much as rehearsed. With each button he pressed, the feedback from the kids was immediate.

  “I didn’t know you had a sister, Thorin!”

  “What? He has a dog named Walt!”

  “Your best friend’s name is Ella!”

  In preparing, I hadn’t planned on what the reaction would be. Each piece of information delighted them. Thorin was radiant. It was—in a word—a moment. And if you do indeed see your life flash before you when you die, this will be one of my moments.

  Everybody in the class wanted their picture taken and placed into the program. More squeals ensued after each corresponding name was entered and listened to. As I was packing up, Ferrell came over to me.

  “So that’s Thorin’s iPad?”

  “Yes.”

  “Only his, right? He uses it whenever he wants?”

  “Yes.”

  “Do you use it?”

  “No.”

  “I can’t touch my mom’s Kindle. Wow. Thorin is so lucky.”

  Two months later Thorin was accused of biting again. A small group of children were left alone for a couple minutes. When Ms. Charles came back, two boys said that Thorin had bitten them. She didn’t give me their names but she did call their parents to let them know what happened.

  “He doesn’t have front teeth.”

  “There were no marks.”

  When we got home from school, I asked Thorin if we could use the iPad to talk about what happened. He said yes.

  “Ms. Charles said you bit someone. Did you?”

  “Yesith,” he said.

  I made a button in the program for Thorin that read “I bite people when I feel ___” and asked Thorin to pick an emotion to fill in the blank. He picked “afraid” and “sick.”

  He motioned he was hit in the face. Because the students’ photos were in his program, he was able to identify who hit him: Isaiah and Christopher. He also pointed to a girl named Felicia who made a funny face at him, showing a lot of teeth. I believed him.

  I emailed what I had discovered to Ms. Charles and asked if this scenario sounded plausible. She wrote back, confirming that the incident did involve those two boys and that Felicia did make funny faces.

  I knew Christopher was in the recreation program with Thorin, so I started hanging around at the end of the day before I took Thorin home. A few days into my stakeout, I saw Christopher come up behind Thorin, who was standing on a platform about two feet off the ground. Had I known what he was capable of, I would have yelled to try to stop what happened next: Christopher looked around then shoved Thorin off the platform. Thorin face-planted and immediately started crying. I was shocked by Christopher’s audacity and ran over to help Thorin.

  I turned to Christopher and said, “I saw that!”

  “It was an accident!”

  “No, it was not. I want you to listen to me very carefully. Don’t ever do anything like that again. Do you read me, Christopher?”

  He looked like he was going to cry but held it together. It almost made me feel bad for threating a six-year-old.

  I reported what happened to the staff. At first Christopher lied, then he thought better of it after he looked at me. Even at his age, he could discern the look that said, “Don’t mess with me.”

  “I did it! I pushed him.”

  When I told Ward that night he said, “Kari! He’s six!”

  “So is Thorin. I’m a mother, Baby.”

  In light of my recent observations, I made more time in my schedule for shadowing Thorin before and after school. The first morning yielded tons of distressing information. Everything was fine until the morning bell rang for the kids to file into school; I witnessed nine children—in almost as many minutes—force their unsolicited help onto Thorin. He would shake his head or say no, but they didn’t pay attention.

  One kid scooped up Thorin’s backpack and grabbed Thorin’s arm to shove it in the strap. I intervened and said, “Hey, you, stop!”

  The next one grabbed Thorin’s hand to pull him toward the door. I took his hand off Thorin saying, “Don’t touch him!”

  All the way inside the building, I ran interference. A kid flew in front of me and tried to drag Thorin up the stairs, so I yelled, “Okay, I do not like that! Let go now!”

  Eventually, I was able to usher Thorin to the classroom without any interruption. But once there, a boy tried to pull off Thorin’s backpack, and I admonished him. “What are you doing? Move away, now!”

  A girl started yelling, “He has to line up outside the door,” then she pushed him in line. I got between them.

  “You aren’t in line, Bossy! Hey, I’m talking to you!” I said facing the girl.

  Then, I turned around and found a boy holding either side of Thorin’s face saying, “Do you understand?”

  I peeled the boy’s hands from Thorin’s face.

  “Don’t touch him!” I said, close to tears. I felt totally discombobulated.

  As quickly as it started, it was over as soon as they filed into the classroom. Thorin casually waved goodbye. Walking away, I realized I had witnessed his daily routine.

  At dinner that night, Ward and I talked to Thorin about the other students.

  “I saw how you’re treated at school. How you feel about that?” I asked.

  Thorin slammed his fork down on the table. He made jabbing and smashing gestures and said, “Mad!” He quickly amended it, “Hulk mad!”

  I felt like a complete asshole for not knowing the degree to which he was managed by other children.

  Ward asked, “When the kids get excited to see you, how do you feel?”

  “Mad! Not baby!”

  “It makes you feel like a baby, Thorin?” I asked.

  “Yes! Thorin not baby!”

  “That’s right, Thorin. You aren’t a baby,” Ward replied.

  “Hey, can you and I do another presentation together to tell your class how you feel?”

  “Yay!”

  There were only a couple weeks left of kindergarten, but we had to do something. Ward and I found it difficult to understand how this had been allowed to happen; however, it was a window into Thorin’s behavior issues. He was controlling his actions much more than his peers, and I knew I didn’t have the strength and restraint he demonstrated. The next day, I informed Ms. Charles we were doing another presentation. She was again enthusiastic.

  In preparation, Thorin and I discussed what buttons to create in Proloquo2Go. He had several recommendations: “Wait”; “Ask me”; “Stop”; “I am mad”; and “I want to hit.” Then I made recommendations, which he approved: “I don’t need help” and “You do not understand me, but I understand you.”

  I was nervous about the presentation
. What if one of them asked about Down syndrome? I didn’t feel equipped to answer that line of questioning. We had not yet talked to Thorin about Down syndrome, which in retrospect seems completely ignorant on our part. If we thought it was great, why wouldn’t we share that with Thorin?

  When we finished our presentation, Ms. Charles asked if there were any questions. A boy’s hand shot up. Thorin pointed to him saying, “Michael.” In my head, I was convinced Michael was going to ask about Down syndrome. I started to panic.

  Michael started to ask, “Thorin, Thorin, um, Thorin? Yeah, Thorin, I just want to know why . . . yeah . . . why . . .”

  While Michael tried to find the right words, I was thinking, Spit it out! I know you want to ask about Down syndrome.

  “Yeah . . . um . . . Thorin . . . Thorin . . . why you like Captain America so much?”

  With school ending soon, I started making arrangements for Thorin to attend summer school. We knew six other classmates of his were also attending. I went to meet with the principal.

  “How do we go about getting Thorin enrolled in summer school?”

  “He can’t go to summer school here,” she replied sharply.

  “Why?” I was honestly shocked.

  “We don’t do inclusive summer school programming here.”

  “Wait . . . So what happens? Where is Thorin supposed to go?”

  The principal mentioned another school. “He’ll be in a self-contained classroom.”

  I could feel myself getting upset, “But it would be better if he was with classmates . . . here. This is his school.”

  “No, not during the summer.”

  For all the little steps toward inclusion, this was a huge move backward. Thorin was clearly not like the other students, who were always included.

  Thorin and Jade

  CHAPTER SIX

  We’ve Crossed Over to the Twilight Zone

  Shortly after meeting with the principal, Ward and I attended an end of year IEP meeting. We learned the principal couldn’t actually make the decision for Thorin’s summer school placement outside of an IEP, but she still insisted he should be in a special education classroom. When the issue of Thorin’s behavior came up, his physical therapist offered information she had not shared all year: “Thorin’s early attempts to make physical contact with people were heavy-handed due to low tone and lack of muscle grading and perceived as hitting; then all the attention that hitting gets leads to more. So the point is Thorin needs to be taught how to touch someone gently.”