Not Always Happy

by Kari Wagner-Peck

  Sherry also told me something that is probably at the heart of parenting: “Parents, especially now, don’t know they can ignore most things. They over-parent. The kid feels overwhelmed, and the parent is tired. What a waste of time.”

  In September, we attended an IEP meeting for the annual review of Thorin’s goals. His teacher, Mrs. Bruce, was asked to report first.

  “He’s physically aggressive,” she said, sounding scripted and rehearsed.

  That didn’t seem like a very nice—or accurate—thing to say about anyone, let alone one of your students. “Exactly how was he aggressive?” I said, seething.

  Trisha, our advocate, kicked me hard under the table. Talk about physically aggressive. Then, Ward patted my hand. They were so good cop, bad cop.

  “He pushes and pokes the other children,” she explained.

  Are you serious?

  We had never received the occupational therapist’s report on proprioceptive awareness because she was assigned to a different school. I looked to Thorin’s new occupational therapist; it seemed they only listened to each other, not Ward or me.

  “Your colleague described that as proprioceptive awareness.”

  She smiled. “Okay.”

  To Mrs. Dean’s credit, she said, “I don’t think we should label Thorin’s behavior as physically aggressive. He’s not aggressive.”

  The occupational therapist smiled again and said, “Okay.”

  I couldn’t stomach any of them. The truth appeared to be a moving target. And, I was the mother bear who was inept at defending her young. Every move led Thorin further into a trap, a snare.

  After the meeting, I emailed Trisha and told her I wanted to homeschool. I had no idea how we could actually do that and I hadn’t even said anything to Ward. I had to get Thorin out of there. She emailed back.

  Homeschooling is not a great option now. Laws are changing about homeschooling and related services, which could mean Thorin would not get any services from the district. It would be all out of pocket. We have to get through the evaluations first. We can fix this.

  I didn’t mention my email or response from Trisha to Ward and hoped we could fix this.

  The following week, the school nurse called to say Thorin had wet himself. I went to the school.

  “He never goes when I go with him. Then, he wets himself,” Miss Jane informed me.

  “What do you mean, when you go with him?”

  “I stand outside the door.”

  “No, do not do that,” my frustration evident. “Has it occurred to you he isn’t comfortable going to the bathroom with you right outside the door?”

  WTF! Hadn’t we already gone over this? Leave him the fuck alone in the bathroom!

  “What do you want me to do?”

  I wanted to scream, “Be better at your job!” Instead, I told her I had to think this through, which became my new comeback to the worst ideas offered. I needed something that could address the systematic focus of infantilizing Thorin rather than running around to put out the same fire.

  It was clear Miss Jane saw her job as controlling Thorin’s behavior more so than helping him learn reading, writing, and math. After conferring with Ward, I asked to have Miss Jane removed as his aide. I also requested, again, that Thorin be given privacy in the bathroom.

  The principal complied with my requests. Thorin’s new aide reminded me of a drill sergeant in a blue jean jumper. On her first day, I had a quick conversation with her after Thorin went into the classroom.

  “I know you’re tough.”

  “I am tough but fair. I think Thorin is capable.”

  Her response was something I hadn’t heard before.

  “So do I. Thank you.”

  Thorin wet himself three days in a row, and I left a message for The Pee Whisper. Sarge, as I thought of Thorin’s new aide, suggested maybe she should pretend not to notice his wet pants, then he would have to wear them. She believed the discomfort would probably make him stop doing it. The fact that she didn’t think Thorin would bring up having wet pants was mind-boggling, so I went to my standby comment: “I have to think about that.”

  I ran to the car to call The Pee Whisperer’s office again, saying it was critical. She called twenty minutes later.

  “He cannot be punished in any way,” she relayed.

  “I know!”

  “Is he doing this at home?”

  “No.”

  “I’m comfortable calling it situational anxiety related to school. Regression is normal in times of stress. I’m going to give you a protocol for the staff to follow. Get it out to them today. It’s four steps. Easy! Tell someone to call me with questions.”

  I wrote the instructions using bullet points and explained they were from a professional social worker at a pediatric behavioral clinic. I included her name and phone number and emailed it to Mrs. Dean. The next morning, I met with Mrs. Dean, Mrs. Bruce, and the occupational therapist to go over the protocol. Sarge was not there, but Mrs. Dean and Mrs. Bruce promised a copy would be provided to her that day.

  Two days later at 3:10 P.M., Ward got a phone call at work from a staff person at the after-school recreation program. Sarge had accompanied Thorin to the recreation program in the cafeteria a few minutes earlier. In front of Thorin and other children, she told the recreation staff, “We’re in a power struggle. He wet his pants and wants dry ones. Do not give him dry clothes.” She then left.

  Ward headed to the school with a set of dry clothes. Thorin came home with him, crying. That night he peed in his bed. I thought I was going to have a stroke, and, for the first time, I brought up homeschooling to Ward.

  “Kari, I don’t want to discuss that. I want to move forward.”

  “We can’t let Thorin continue. The problem is systemic. This is how the districts deals with a child who has Down syndrome.”

  “I want to focus on addressing what happened. We decided this path was important. They are required to figure it out.”

  We kept Thorin home until we decided what to do next. Bubba came to the rescue to babysit.

  “Thorin little baby,” he told her.

  “Thorin you are not. You are a big boy! Your Bubba’s big boy.”

  Hanging out with Bubba, watching movies, and reading was the best recovery program, ever, for Thorin.

  We tried resolving things at the school level by requesting an emergency IEP meeting. Prior to the meeting, we sent documentation, which included an incident report we had requested from the city’s recreation staff—stating what had transpired with the additional information that Sarge had said not to notify Thorin’s parents—and the school’s daily communication log that had been sent in Thorin’s backpack that day. The log was a record of Thorin’s school day, recorded by Sarge.

  (On the front of the log)

  2:15 P.M.: Bathroom

  2:30 P.M.: Classroom: “Work refusal”

  2:50 P.M.: School released

  (On the back of the log)

  Bathroom: 2:15–2:30 P.M. Peed on his pants. I did not stay in the bathroom but stood outside with the door ajar. Checked every five minutes.

  At the IEP meeting, Joan Croft said, “What occurred was a communication misunderstanding. The aide had been acting on instructions that had come directly from the mother.”

  I came out of my seat and yelled, “That’s a lie!”

  Joan Croft countered, “We are not going to discuss this any further. We will move on.”

  As I stood hunched over at the table, time was suspended. Ward put his hand on my back, guiding me back in my seat. The die had been cast; Thorin had a terrible mother—she has a time of it, you know. They had ignored all the documentation we provided. Sarge had told the recreation staff not to notify us. Why would she do that if she was acting on my instructions?

  We escalated to the next level and filed a formal complaint with the school district. We received a terse letter from the human resources department, which stated they had done its own investigation. I
nvestigators interviewed Sarge as well as the principal and Joan Croft, both of whom were not in the building at the time of the incident; they did not speak to the staff at the recreation program. We were notified that if there were any disciplinary action, we would not be appraised. In addition, we had to request that Sarge be replaced as Thorin’s aide.

  We were traveling through another dimension, a dimension not only of sight and sound but of incompetence, deceit, and judgment. Our journey took us away from a wondrous land whose boundaries included everyone.

  Thorin dressed as Thor

  CHAPTER SEVEN

  The Littlest Avenger

  I contacted scores of parents with children who had Down syndrome or cognitive disabilities in our state, and beyond, through social media. Many were in our shoes, or more aptly, their children were in Thorin’s shoes. I read articles by professionals and parents regarding children in self-contained and inclusive classrooms; criticism was aimed at the implementation of both models.

  Some families had also thought of homeschooling or were already homeschooling. One of the biggest stumbling blocks to leaving school was the belief the school system won if it never had to figure out how to inclusively educate children with disabilities, particularly those who were neurologically different from the norm. Additionally, most parents could not financially afford the homeschool option.

  I contacted All Born (in), a sister site of the Northwest Down Syndrome Association in Portland, Oregon. The parent-driven organization helps educate parents on best practices for working with their school districts on inclusion. The woman I spoke to admitted it can be an uphill battle since inclusion was a foreign concept to most districts. She also shared something else with me: “The federal protection on what a least restrictive environment is for students with disabilities is not defined. It’s hard to enforce something when no one agrees on what it is.”

  After several conversations, Ward and I also didn’t believe we could financially afford to homeschool. Our focus turned to how to keep Thorin engaged and learning at school.

  Thorin was assigned two Ed Techs when he returned to school. Mrs. Shelby worked with him in the morning, and Ms. Alice assisted in the afternoon. Both women were friendly and spoke positively about him. Ms. Alice was working on a master’s degree in special education.

  During Thorin’s time away from school, we visited a local apple orchard. Thorin took dozens of photos with his iPad while we were there. His photos had a documentary feel with people captured during unguarded moments, not posed ones. Thorin was a boy who wasn’t understood when he talked, but looking at his photos, one would assume a discerning eye took them. Not only was he was telling us about what he saw but also what he felt.

  I asked Thorin if we could show the art teacher his photographs. He agreed. I was surprised Thorin wasn’t shy or nervous when we went to see her. She nodded as she looked at the first one and then leaned in, examining each photograph carefully. Her face changed from polite interest to wonder.

  “Thorin!” she said, looking at him, “These are really good!”

  Thorin went up on his toes, putting his arms in the air. “Tanks!”

  “Thorin, you’re a good photographer. I love them!”

  “Tanks!”

  “And, they aren’t great just for a seven-year-old; they’re great for a person any age.”

  “They are great!” I couldn’t contain my enthusiasm.

  Thorin shot me a look signaling this was between the two of them.

  “I have an empty case in the front hallway. These should go in there. What do you think, Thorin?”

  “Yesith!”

  The look on Thorin’s face was sublime. I wished all his school experiences could be like this. He went off to class, and I stayed behind with the art teacher to chat a little more.

  “These are great and not just for a boy with Down syndrome,” she said. “He’s got an eye. I think his photographs could change how people think about children with Down syndrome.”

  I took a step back. That shocked me. I believed it but I didn’t expect her to say it. We had another ally!

  That weekend, we printed the photographs, and Ward helped Thorin mount each photo on a thin board. What we didn’t know was that Ward had bought small, wire easels for each of the photographs.

  “Thorin, your photographs can go on these,” he said as he moved a photograph onto one of them.

  “Wow! Like a real artist!” I said.

  “Daddy! Tanks!”

  That Monday, the art teacher and Thorin decided where each photo should go in the glass display case. She handed a small sign to Thorin to place in front of his photographs: Photographs by Thorin, 1st Grade. When it was all set, the art teacher, Thorin, and I stood in front of the exhibit case in the main hall of the school, taking in the deliciously satisfying moment. It was what Thorin had longed for and what Ward and I had wanted for him. The moment was possible simply because the art teacher didn’t see him as a problem to solve. She saw Thorin as someone worthy of contributing.

  Thorin got a lot of praise for his photographs from students and staff. There were a few outliers who suggested Thorin was too incompetent to take the photographs, like the parent who asked me, “Does he know he’s taking pictures?”

  Thorin was still pushing and poking other children and touching their things—at least that’s what we were told by Mrs. Dean. At this point, I was convinced it was a game to get Thorin in trouble. It sounded like the universal tattle, “He’s touching me!”

  One of the best things I learned from my dad about child rearing was “Nobody likes a rat.” He never doled out a consequence based on tattling. He knew kids say things that are true and not so true to get attention. I shared my dad’s wisdom with Ward, and he was not comfortable with me sharing it with the school. I suggested we have Trisha, our inclusion advocate, settle the debate. She had a whole other take on it.

  “We should request a functional behavioral assessment be done on Thorin.”

  This was the last thing I wanted to hear, another person brought in to help Thorin.

  “Trisha, Thorin is the recipient of the worst behavior. The Ed Techs told me they have to stop kids from picking him up, patting him on the head, and telling him what to do. We want the focus off Thorin.”

  “The behaviorist will work on the whole class. This dynamic can be revealed for what it is,” she countered.

  Including Thorin was an all-consuming task, and we hadn’t even gotten to the education piece. Ward and I shared the same instinct for moving forward without a behaviorist, but we also weren’t entirely sure we knew what we were doing. We were paying Trisha to help us, so we decided to listen to her.

  Ward and I also decided another IEP meeting was in order. There were so many moving parts; it was hard to know what was happening. I approached Mrs. Dean and Joan Croft about an IEP meeting to discuss the implementation of a much-needed communication device, the behavioral concerns, and educational goals. The meeting was set for a month away. In the meantime, Joan Croft suggested we move to our assigned neighborhood school, old Walt Whitman High, where they wanted to place Thorin in a self-contained classroom. Mrs. Dean suggested we homeschool Thorin. It was that moment when you know you and your kid were no longer welcomed.

  I even got into an argument with my mom about Thorin’s schooling. She thought what we were doing was unfair to Thorin and suggested we try the self-contained classroom. I tried explaining.

  “There’s no guarantee he will learn there either.”

  “Well what about David? He doesn’t have problems.”

  David was the only other child at the school who had Down syndrome and had been at Thorin’s preschool. My mom wasn’t the only person to draw comparisons between Thorin and David. David was a year older and several inches taller than Thorin. He had dark hair, dark eyes, glasses, and his verbal communication skills were superior to Thorin’s. When someone wasn’t mistaking them for each other—which seemed very “they all look
alike” to me—then they were comparing Thorin to David.

  “They’re two different people. Besides, David is in an inclusive classroom.”

  “Maybe Thorin shouldn’t be.”

  “Well it’s what we’re doing.”

  I realized the difficulties at school were a reflection of what people in general think about a child with Down syndrome: They are not like the rest of us. Worse, they are less than us. And, I wasn’t just thinking about it; I was writing about it on the blog. The blog became my connection to other families who were struggling. I found it isolating to figure out what was best for Thorin. Sharing what was happening on my blog made it less lonely.

  I had made a discovery! Albeit, it was a year before. One of my favorite authors, Chuck Klosterman, made fun of people with cognitive challenges. I had googled him out of curiosity when his appointment as the Ethicist at the New York Times was announced in 2012. While I was searching, I came upon a quote by Klosterman that floored me: “You used to be able to tell the difference between hipsters and homeless people. Now, it’s between hipsters and retards. I mean, either that guy in the corner in orange safety pants holding a protest sign and wearing a top hat is mentally disabled or he is the coolest fucking guy you will ever know.” I could not believe the writer I loved said that. Then, I discovered he had, at a book reading. Next, I searched “Chuck Klosterman and retarded” and found more examples. In his book Fargo Rock City, he wrote that he didn’t want to sound insensitive yet continued to say “. . . show me a person whose intelligence equates to that of a dolphin and I will show you a fucking retard.”