My next step was to search online for some instance where he had been chastised or called out for that usage. I couldn’t find anything. How had a person who was deemed the Ethicist by the New York Times not been challenged on that ethical point? I felt like Melanie Griffith in the film Working Girl! In the same way Griffith had put together seemingly unrelated facts culled from newspapers and magazines to suggest a brilliant business acquisition, I had figured out that the New York Times’ Ethicist wasn’t completely ethical. I had to do something! But, I didn’t do anything for over a year. I had no idea how to go about addressing him.
I didn’t tell anyone my discovery. Then, three things collided: I was gaining readers and a little reputation for what I was writing; Chuck Klosterman had recently published a new book I Wear the Black Hat; and I knew the problems Thorin faced at school were a reflection of systematic oppression directed at people with disabilities.
I finally told Ward what I discovered.
“Oh, no. Kari, do you really want to go down that road? We have enough going on.”
“Hell, yes! We’re losing this battle at the school because it’s a bigger battle. It’s out there! I want to change out there!”
“Settle down. What are you proposing?”
“I’m going to write him an open letter on the blog. I’ll get others to share it!” Even as I said it, I knew it sounded like “I’ll put on a show in my parents’ garage!”
“How will you get people to share it?”
“I can do it! I know I can!”
I had never considered that part of my parenting duties would include activism but I knew I had to do something. The blog had become an extension of my parenting as an advocate; confronting Klosterman was too. I wrote my letter. It was short and to the point. Ward looked at it.
“Are you worried about what will happen?”
“I’m more worried what will happen if I don’t. I’m doing it!”
For the first time in months, I felt like good things were possible for Thorin. With excitement and nervousness, I hit publish.
Was it a viral sensation? Well, I did get enough people to share my post that I was able to get Chuck Klosterman’s attention—he sent me an email apologizing and offered to make a donation of $25,000 to an organization of my choosing. Also, I had permission to print his letter on my blog. I was interviewed on our local NBC affiliate, and USA Today picked up my story. It had worked!
He and I both did something unique. I had crafted a persuasive argument I knew would be hard to resist because he was, after all, the Ethicist—he would be a pretty crappy one if he didn’t—and because he had just published a new book. No one wants bad press. As for Chuck Klosterman, no notable person to that point had so eloquently owned up to the mistake of using the R-word, and none had applied a self-imposed penalty of money. It was the icing on the cake.
My campaign resonated with many thousands of people who also knew the pain that word caused. I received hundreds of comments and emails. An email that best summed up what other parents communicated was by a father of a son who has Down syndrome: “I broke down in tears reading Mr. Klosterman’s letter and I’m not a crier. I feel the world is better today for my son.”
Not all parents have the additional charge of activism as part of their parenting duties. But for parents whose children are atypical, it can be a calling to make the world better for more than their child. Ellen Seidman, a popular disability writer and the author of the blog Love That Max, interviewed me about what had transpired. She asked me what I thought Thorin’s reaction would be when he was old enough to read about it.
“Seriously, I hope it’s something like, ‘What else would I expect from you? You’re my mother.’ This is mother’s work. This is my real job. Your kids aren’t supposed to throw a parade every time you have their back.”
When I found out I was going to be on the local news, I had a new concern. We never told Thorin he had Down syndrome. The subject had come up, but we weren’t sure how knowing about it would help him at that age. In hindsight, that rationale was bogus. He has it; he deserved to know.
Next, I considered the following question: can a child—any child—understand what having Down syndrome means? Honestly, I found most adults, including educators and other professionals, knew next to nothing about Down syndrome.
My final consideration was how would I go about telling him. At the time, I couldn’t adequately explain how Curious George was entrusted to navigate ships into New York harbor or fix the Hubble Telescope. How could I explain Down syndrome?
The day before the interviewer came to our house, I woke up at 2:48 A.M., convinced I was going to have an anxiety attack. What if some kid’s parent from school saw me on television? What if he talked to his child about Thorin having Down syndrome? Then, what if the next day at school, that kid asked Thorin about having Down syndrome? Reason should have told me everyone already knew and, more importantly, maybe that had happened, but Thorin couldn’t tell me.
My heart was racing during the next couple hours as I lay in bed, trying to turn this dilemma in my mind. Finally, unable to contain myself, I decided to wake up Ward.
“We have to tell him today!” I yelled, sitting upright in bed.
“What’s happening?” came Ward’s voice from under the covers.
“Wake up, wake up! We have to tell him he has Down syndrome!” I said.
At that point, I knew Ward did not actually have any idea what I was talking about, but he had heard me in this “we must do something” state before.
“Okay, settle down,” Ward said in a resigned, tired husband way. “What time is it?”
“I’m not sure,” I lied.
“Oh, God. Give me thirty minutes. Make coffee.”
After much whispered debate, we decided we would both take the day to figure out how to tell him. Thoughtful planning and teamwork would be our key to success.
After Ward left for work, I told Thorin on my own. I wanted to be Team Us but I could not manage my anxiety. I believed the only way to not have an anxiety attack was by telling him that morning. I’m convinced if Little Ricky had Down syndrome, Lucille Ball would have done the same thing after Big Ricky went to the club.
As I watched Thorin from the doorway of the den, I thought, This is the last minute he doesn’t know he has Down syndrome. He was watching The Magic School Bus and eating waffles. I walked in the room, swinging my arms in a way I had never done before.
“Hey, guy, dude, little man, buddy . . .” My voice trailed off, and I followed with maniacal smiling. “I’m going to turn the TV off for a bit so we can talk.”
Like all males when notified they need to talk, he put his head in his hands and yelled, “No, no, no, no. Noooo!”
As I sat on the couch and looked thoughtfully at him across the room, I realized I had no concrete idea of what I was going to say. I looked at the floor and saw his substantial collection of Avenger action figures. A couple days before, we had all gone to the movie Thor, The Dark World. In fact, Thorin had worn his Thor costume to the theater.
“Have you ever heard the words Down syndrome?” I asked.
“No,” he said.
I was surprised by Thorin’s response. “Okay, have you ever felt like you were different from other people?”
“No,” he said in an almost indignant tone, which shocked me.
“Okay. Well, I want to tell you something. Yeah . . . you . . . have a super power. It’s called Down syndrome.”
Thorin looked at me wide-eyed and flexed his biceps.
Things weren’t going so bad, so I continued, “Down syndrome is an extra chromosome in your body . . .”
He started feeling around his mid-section.
“You can’t see or feel your chromosomes; they are so small.” I realized the scientific route was too abstract. “See, Down syndrome gives you almond-shaped eyes and a terrifically adorable flat nose. And, it gives you super powers. Some of your super powers are big love, photography, and . . . um .
. . um . . . farting. It also made you a little small. Talking and being understood is hard for you right now, and learning some things takes more work.”
Thorin nodded his head and smiled, signaling that he accepted all this information.
I leaned forward. “Not everyone sees your super power, so some people just see someone who needs help for some reason.”
Thorin started laughing.
“The thing is . . . Daddy and I always wish we were better parents, but we never wish you didn’t have your Down syndrome super powers.”
“Magic School Bus?” he asked, directing me with his waffle-crusted fork to turn the television back on.
“Of course!” I said, relieved. And I was. My anxiety was gone.
I emailed Ward to tell him what I had done. I included that Thorin was fine, and now Down syndrome would be a lifelong conversation. When Ward wrote back, he told me it was okay; I did good.
I published that conversation with Thorin on Huffington Post. I received emails from around the world thanking me; however, I also got some crap. People who objected did so on the grounds that disability is not a super power. I do see the validity in that argument, but if Thorin didn’t worship the Avengers, I wouldn’t have used that explanation. It worked for Thorin, and I never suggested this was the answer for anyone else.
The things I chose to denote his super power were things most people can do—love, take pictures, and fart—which told him he was like everybody else. I didn’t want Thorin to think Down syndrome is only what he cannot do. Later, I provided Thorin with a basic genetic explanation of Down syndrome. He told me to stop talking during my informational session.
At our next IEP meeting, we were accompanied by our advocate, Trisha. Aside from the usual crowd, a communication specialist and the behavioral specialist were also present. To the behavior specialist’s credit, she did talk about Thorin’s behavior as a response to not being understood and the class’s behavior as infantilizing. Still, the divide between “him” and “them” was hard to reconcile. She was there to reinforce appropriate behavior, not change the mind-set of the class about people with Down syndrome. It would be like addressing sexual harassment in the workplace without acknowledging such a thing exists and hurts people.
Craig Joyce, the communication specialist who had named his company after himself and was always referred to formally, came across as confident, experienced, and knowledgeable. He made a pitch for an application that would change the way Thorin could participate in the classroom. I had spoken with him the day before, and he had made a compelling case to request incorporating that particular device into the IEP. “If we do that, it will make it easier for me the next time—here or at another school—to get other students the help they need.” His presentation was so persuasive everyone in the room enthusiastically agreed to write that specific device into the IEP.
Next, we addressed a concern with Mrs. Dean, his special education case manager. Ward took the lead.
“We noticed on the communication log that Thorin leaves the classroom with you for forty-five minutes at a time, but it doesn’t indicate what you do.”
“Sometimes we walk around the school looking at things,” she replied.
“You look at things? What kind of things?” I asked. I could feel Ward tapping my shoe as I talked.
“I set up things for him to take photos of.”
“What?” asked Ward, alarmed.
“I took the flowers from the front office and put them in my room. I arranged them for him. He didn’t want to do it, but then he did.”
I wanted to say, “What a pedestrian composition, you fucking philistine!”
Ward was equally agitated. “We don’t tell Thorin what to take photos of. That’s his thing. Just his.”
“Oh, it was fun!” she exclaimed, completely oblivious.
Joan Croft was thankfully not able to attend the meeting, but a new face, Ms. Shay, was there from the district. She jumped in.
“Mrs. Dean, what I’m hearing is Thorin’s parents don’t want you do that again.”
Mrs. Dean made a pouty face but agreed. Next, she said Thorin didn’t know the alphabet.
“Okay, that’s not true,” I said keeping my voice neutral.
The principal jumped in, “Mrs. Dean, tell us why you think that.”
She pulled out a sheet of paper with the letters of the alphabet in no particular order on it.
“I said, ‘Thorin show me the W,’ and he couldn’t. He couldn’t show me any of the letters I asked for. He circled the wrong letters every time.” She was completely satisfied with her documented findings.
“Can I see that a minute?” Ward studied the paper quickly then said, “Okay, I see what happened. He circled T-H-O-R-I-N. He circled the letters in his name.”
The principal asked Ward for the sheet, “Mrs. Dean, he’s right. It’s his name.”
“Oh, I didn’t notice that,” Mrs. Dean said. “Still, they weren’t the right . . .”
Ms. Shay audibly sighed, “Okay, let’s move on.”
The school psychologist had joined the meeting late, missing the report from the behavior specialist.
“I have been checking in with Mrs. Mallory, the morning Ed Tech. Thorin continues to eat at the bad boy table.”
“The what table?” I asked.
Laughing, the school psychologist said, “It’s something I call it. It’s a table for boys who act up.”
Ward asked, “How long has he been there?”
“Weeks. There, it’s easier to control the situation.”
“What was he doing that he ended up there?” I asked.
Mrs. Mallory answered, “He takes kids’ food packages or touches their food trays . . .”
The principal interrupted, “First, I don’t ever want to hear the expression ‘bad boy table’ again. Second, Thorin can sit where he wants.”
The fact the school psychologist thought it was amusing to segregate a group of boys was beyond me. I could see Thorin taking a food package to see what it was. It would have been hard for him to say, “Can I see that?” and be understood. I could also see him touching someone’s tray to get a rise out of Mrs. Mallory. After all, that was expected behavior from Thorin; they were reinforcing negative attention.
The IEP meeting was a meeting of revelations. There were people in that room who had direct and profound impact on Thorin’s well-being and didn’t know what they were doing. And, we weren’t the only ones who were noticing that.
Ward and I finally met with Superintendent Samuel. The meeting had been in the works after we had filed our formal complaint with the district regarding Sarge, the Ed Tech, but it had taken another couple of months to make it happen. Dr. Samuel wore a suit, conveying he was the guy who called the shots. Ward wore a sports jacket and tie, conveying calm and reason. I wore jeans and a T-shirt I had slept in, conveying discontent and depression. I had reached the end of my rope on patience. Thorin had been done wrong, and I was out for blood.
“I want an apology for what has happened to Thorin,” I demanded.
Dr. Samuel looked at Ward then me, “That’s not going to happen. No one is going to apologize. We don’t do that.”
“Why are you allowing women who were educated in the 1970s determine the fate of children with disabilities today?” I asked.
I saw Ward nod. We both waited.
“I’m going to tell you something, and if you tell anyone else, I’ll say you’re a liar. I can’t do anything until these women retire. They have to leave and make room for others who know differently,” the superintendent said.
I saw my hands were clutched. I felt a tight band in my chest and my head.
Ward said, “No rubber room, uh?”
Samuel chuckled, “You’re not from Maine.”
“Jersey.”
“I can’t move them. They’re here.”
I had no idea what they were talking about. The conversation was a back and forth between them. I noticed I was
slouched in my chair with my legs spread in front of me. My head was against the chair back. I thought I might fall asleep.
When Ward and I were back in the car I asked, “What’s a rubber room?”
“It’s the room teachers report to when they’re accused of misconduct. They get paid to do nothing. They’re kept there instead of the classroom.”
“What are you thinking?” I asked.
“I’m worried about you, Kari”
“Me, too.”
Winter break was a welcome relief from school. Thorin spent his time going to movies and sledding with Ella and Evvy. Bubba had been in the hospital and was staying with us until she was ready to go home. Thorin liked crawling into bed to cuddle and read with her. It was good medicine for them both. It was hard not to notice how calm life was away from school.
When school restarted, the implementation of the communication device for Thorin to use in the classroom was finally beginning. I attended a training session with Thorin, Mrs. Holt, and his Ed Techs. The communication program was labor intensive. You had to push three buttons to get to a single word utterance. Thorin would not be able to use it functionally until he and his Ed Techs knew how to operate it. I shared my concerns with the Craig Joyce outside the training.
“Thorin needs something now.”
“But this helps him with sentence structure. He needs that.”
“First, he needs people to understand him. Right now he needs that.”
A couple weeks later, I asked Thorin if he was excited about using the communication program.
He teared up, “No.”
“No?”
“No.”
“How about giving it more time?”
He didn’t say anything. That night, Thorin got out his signing DVDs and started watching them. The next morning at breakfast, he signed rather than spoke.
I contacted Craig Joyce to tell him Thorin started signing at home. He seemed unwilling to entertain the fact Thorin was not happy. He emailed me back.
He may not be as excited as we are about the long-term prospect of being able to communicate effectively given what he is attempting. I would avoid asking questions that imply an option, especially if the “no” option is really not an option. I think that the device can be a very valuable language learning and communication tool. I think, and I hope that you do as well, it is important for him to learn to use it. We wouldn’t ask “Do you want to brush your teeth? Will you wear your jacket today?” If we suggest it is an option, then he may choose not to.
Not Always Happy Page 19