What neither of us could acknowledge was that Thorin was changing. He had never hit anyone like that. Behavior is communication. What was he trying to tell us?
It wasn’t just the staff that was the problem. The next day, I talked to some kids at the school about staring, pointing, and making funny faces at Thorin. I also notified his teacher.
“Well no one knows him so they’re curious,” she said smiling weakly.
I was furious. “Those gestures don’t indicate curiosity.”
“I don’t know what else it could be.”
Was I bumping up against her ingrained sense of deniability? The school had colorful posters stating it was a bully-free zone. I guess if staff members play ignorant to actions constituting bullying then, voilà, you have a bully-free zone!
I met the teacher consultant, Marie, the following day. She seemed to be getting herself up to speed quickly. She told me she had read Thorin’s school records and had already talked to his aide, Mrs. Updike.
Referring to Mrs. Updike she explained, “I can try to educate her but . . .”
“Okay, I get it.”
“I’m going to his regular school to get some more information. I’ll fill you in.”
She called me later that day. “Did you know they have two kindergarten and first grade summer classes going on there? There’s six or seven students in each.”
“I knew there was one with some kids from his kindergarten class.”
“Why wasn’t he placed there?”
I gave her the details.
“That’s where he should have been,” she said. “It’s perfect for him—his school, students he knows, small class size.”
Before I contacted Joan Croft and Thorin’s principal, I called the school district’s grant manager. I told her what program we had been promised, including the name of the foundation funding the project, all according to Joan Croft. I could hear the strain in her voice.
“We did get a grant from that foundation, but it isn’t for the program you described. I’m not aware of that program.”
“They just stuck him in that classroom without planning, preparation, or supports! That’s not right,” I told her.
“I’m sorry. I don’t have anything to do with that.”
It was so hard to believe we had been lied to. I couldn’t compute it. I felt stalled.
When I went to get Thorin, I was told he refused to go into his classroom. Between Marie, the speech therapist, and occupational therapist, they figured out his day for him, away from class. We requested Thorin be moved to his regular school. We were told he would not have an aide because Mrs. Updike needed to stay where she was. We didn’t want her anyway—a trained monkey would have exhibited more grace and skill. In a desperate move, I emailed Ms. Charles to tell her what was going on. My subject heading read “PLEASE HELP ME.”
A few hours later, she emailed with her phone number. When we talked, she explained she would co-teach one of the summer school classes, so Thorin would have enough support to participate. Her focus would be for Thorin to learn—and to love school again. She gave up two weeks of her summer break to do this for him. The tears started, and I could barely get out my thanks.
“I wouldn’t do this for anyone, but it’s Thorin.”
“You get him,” I said crying.
“I do.”
I told Thorin about going back to his school and working with Ms. Charles.
“Good!” he said.
“Are you excited to go back with her?”
“Yesith!”
When I dropped Thorin off with Ms. Charles, she and I both had tears in our eyes. Thorin ran for a hug. He was back in good hands. Ward and I were still furious Thorin had been placed in such a destructive environment.
“Inclusion is not a sink or swim situation! They have to believe it’s an important model. They have to support it,” I told Ward.
“Thorin shouldn’t have the obligation to be included. This treatment of him—like he is the problem—stops. Kari, we’re in over our heads.”
“Yesith!” My response gave us both a much-needed laugh.
Ward decided to send an email to the superintendent of schools in our district and our school board members to apprise them of the summer events. Our superintendent was relatively new to our city and the position.
Dear Superintendent Samuel,
Welcome to Portland. I hope your tenure here is filled with positive experiences and personal triumphs. This isn’t one of them. I am writing to you and our school board members to register my family’s extreme displeasure with the shabby treatment of our son, Thorin, throughout the recent failed attempt to integrate him into a summer school class.
Ward went on to enumerate the challenges since April when the principal said Thorin couldn’t attend inclusive summer school. The responses from the superintendent and the board members, who responded, were diplomatic. They offered thanks for being notified and gratitude for the resolution of the problem for Thorin. There was no acknowledgment in any of their responses that they were troubled that the director of special services had lied about an inclusive classroom or that Thorin’s aide was hostile to working with a child who had Down syndrome.
Ms. Charles was true to her word. She worked with Thorin on reading and loving school. She suggested we get copies of the books she used. She also made arrangements for Thorin and me to meet his first grade teacher, Mrs. Bruce. On the last day of class, the four of us met in the cafeteria. After introductions, she asked Thorin to take Mrs. Bruce’s photo for his iPad.
Turning to Mrs. Bruce she said, “See, he uses this to communicate! It’s awesome. He’ll put your photo in here, then we’ll label it with your name.”
Mrs. Bruce had a blank expression on her face, but she did stand patiently while Thorin took her photo. Ms. Charles and Thorin then huddled at one of the tables to upload the photo. As I watched them, I was struck by how well they worked together.
“Thorin, I’m all thumbs! Help me!” Ms. Charles said.
He laughed and leaned in to see what she had done. They figured it out then proudly showed Mrs. Bruce. She gave a tepid response, but I decided not to judge her by that. Ms. Charles was a firecracker, and most people looked tepid compared to her.
My mom found another set of selfies on Thorin’s iPad. We figured out from the photos he was in the spare bedroom at Aunt Betty and Uncle Matt’s apartment. Thorin had changed the photo setting so his photos had a Warhol-like silkscreen effect. All the photos were bathed in neon green, florescent yellow, electric blue, and tomato soup red with Thorin in various poses: sticking out his tongue; making more funny faces; showing half his face and his arm above his head; raising an eyebrow; and zooming in on one eye with an elbow over his head. Also, there were some photos of Uncle Matt working at his desk in the room.
“Did you know Thorin was taking photos during his visit?” I asked my sister.
“No,” she said, “but he did say he was working.”
Before school started in the fall, I ran into someone from the school district at the grocery store. The person shared with me that the whole summer experience was disturbing and wrong and counseled us to retain a professional disability advocate. If we were interested, this person would set up a meeting with an advocate on our behalf. I called Ward and explained the brief conversation.
“We have a Deep Throat on our side!” I told him.
“We’re doing it! Set it up!”
I met the advocate, Trisha, at a playground. She wore an oversize T-shirt with built-in shoulder pads and black slacks. I brought Thorin, and she brought her two children. While they played, we talked. Her first order of business was her appraisal of Joan Croft, the special services director.
“She’s a liar! She’s lied to all my clients. You said you wanted an inclusive classroom for Thorin, so she made one up! If you said Thorin needed a pony, she’d say they just bought a horse farm. Got it? She will say anything to get you off her case.”
As we continued talking, I remembered something that didn’t seem important before, but listening to Trisha made me think of it differently. Trisha must have noticed a change in my demeanor.
“What’s going on?” she inquired.
“Joan Croft was insistent Thorin take the bus to the other school. I insisted on driving him.”
“Well, you probably wouldn’t have caught on as fast if he took the bus. It isn’t like he could tell you,” Trisha said and then went on to her next thought. “And forget Superintendent Samuel; he’s gone in another year or so. He took this job to have the title of superintendent on his resume. He wants to be in a big city. He’s marking time.”
Trisha sounded angry and knowledgeable about the scene. I wondered if Ward and my naiveté about all things school had made things worse for Thorin. Angry and knowledgeable sounded about right.
Our main concerns for first grade were for Thorin to have a communication device in the classroom and a proper aide. At home, Thorin was using the iPad for communicating if he got stuck, and we wanted him to use it at school. I talked to the principal and told her one of his substitute aides from the previous year knew the program and was looking for a position. She informed me it didn’t work that way, and Thorin would get who was available. When I told Trisha what happened, she told us to get a device included in his IEP. She also wrote up a list of parental concerns for us to submit.
Joan Croft was included on the request for a communication device. She offered to bring in a speech and language consultant to assess what device Thorin needed. Hadn’t Thorin made that assessment with his preference for Proloquo2Go for the last several months? I offered that he could bring his iPad but was told the school didn’t want to be responsible for it.
Two days before the start of first grade, we didn’t have a communication device for Thorin and didn’t know who his aide would be. I talked to the principal.
“School starts in two days. You don’t have any idea who you will assign.”
“Not yet.”
“Will you know tomorrow?”
“Yes.”
“Can Thorin come in to meet her?”
“No, she’ll be busy.”
“Can Thorin come in to meet her before class on the first day? Even ten minutes would make a huge difference with all the stimulation of a new class, teacher, and aide. It’s a lot for Thorin to process.”
“She won’t start until 8:55 A.M. We don’t start paying her until then.”
I knew that was bullshit. “Class starts at 8:50 A.M. He will meet her in class, in front of everyone, five minutes after class begins?” I said sharply.
“Yes.”
It was punitive. Why take it out on Thorin? I wanted to ask her if we could be real and talk to each other like human beings for three minutes, but clearly she couldn’t do that.
Ward and I decided I would walk Thorin to the classroom on the first day. Mrs. Mallory said I couldn’t go in, so I told Thorin goodbye at the door.
“Have fun,” I said weakly.
Thorin walked in to the classroom, sat at a desk in the front row, and put his head down; I watched him from behind a pillar in the hall, so he couldn’t see me. It was so different from Ms. Charles the previous year. A few minutes later, I saw Miss Jane, his new Ed Tech, who was wearing pedal pushers and a polo shirt with anklet socks and sneakers. She walked over to Thorin and tapped him gently on the shoulder. He looked up and smiled. I saw her say something and put her hand out. They shook hands. So far, so good! Mrs. Mallory sidled up to me behind the pillar. Before she had a chance to say anything, I told her, “I’m not leaving this spot.”
I saw Thorin sit upright, turning his attention to the front of the class. Instead of sitting down, she stood next to his desk, hovering. And then, she did something that might not have been noticed by anyone else. Smiling she reached down, interrupting his focus on the teacher, and made a small tap on the tip of his nose. He was in first grade and a month from being seven years old. One of his biggest fears was being treated like a baby.
Later that day, Thorin brought home a sheet of paper, a letter written to Ward and me. The note was brief: “Dear Mommy and Daddy, I love you both.”
After reading it over, I asked Thorin, “Who wrote this?”
“Her,” he said angrily.
“The aide?”
“Yesith.”
“Did you tell her what to write?”
“No!”
In my head, I was thinking some fifty-five-year-old lady just wrote us a mash note.
“Are you okay with that? Do you want her to write for you?”
“No!”
“Okay, me either. Let’s tell her tomorrow.”
“Good!”
The next morning, I told Mrs. Mallory that Thorin and I wanted to talk with Miss Jane—as I had come to think of her—about writing his assignments.
“Let’s get a little group together to talk. I want to add the speech therapist, and I should be there, too,” she said.
The number of attendees seemed like overkill. I had wanted to handle the manner swiftly; however, I agreed. Once we all sat down, I quickly explained that Thorin and I didn’t want her writing his work.
Miss Jane tried to speak, but she was cut off by the speech therapist, “Is that true, Thorin?”
Thorin looked at me. I shook my head and said, “I don’t understand.”
“How did Thorin tell you that?” she asked.
I immediately felt of a sense of déjà vu. “It was in a conversation.”
“How did he say it?”
Why was she casting suspicion on Thorin’s abilities? Was it so impossible for her to believe Thorin might have an opinion? I couldn’t possibly hope to tackle that conversation in front of Thorin given her attitude.
“Here’s the deal,” I said, “Miss Jane should not write for Thorin. She should help him write by himself.”
Mrs. Mallory wrapped up the meeting with promises no one would write for Thorin.
A few hours later, I received a call from the school that Thorin had vomited and soiled his pants. I picked him up from the nurse, who had given him a change of clothing. In the car, Thorin told me, “No more school,” which made me want to vomit.
Mrs. Bruce, his teacher, emailed to see how he was doing and said the other children were worried about him. Ward and I kept him home from school the next day. We were both hoping it was a flu bug and not something to do with school. Yes, that seemed ridiculous, then and more so now, but we wanted to project that school was fine—there didn’t seem to be any other choice.
When Thorin returned to school, he was assigned a new special education case manager; Mrs. Mallory had been reassigned by the principal. The new case manager was named Mrs. Dean. We received no explanation for the switch.
A couple of days later, I had to pick up Thorin early for an appointment with the pulmonologist; his asthma was acting up. When we left the main office, he told me he had to poop. I waited for him in the hallway outside the boy’s room. As fate would have it, Miss Jane was walking to the office.
“Where’s Thorin?”
I motioned to the bathroom.
Shaking her head, she said, “I wouldn’t leave him in there alone. He could lock the stall.”
“He should lock the stall,” I replied, correcting her.
“He locked the stall the other day and wouldn’t come out.”
I gritted my teeth, “Well, he must have come out eventually.”
“I don’t let him use public bathrooms anymore. He has to use the private ones, and I wedge my shoe in the doorway so he can’t lock it.”
“What? So, he never gets a chance to do it right, again? That’s not a solution.”
Still shaking her head, she said in a cloying tone, “You really have a time of it, don’t you?”
“Yeah, I don’t know about that.” I was silently sending what I hope were telepathic messages to Thorin to hurry it up.
“He ran away from me.�
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“Who wouldn’t, you fucking jerk!” I wanted to scream. Instead, I settled for an “Uh huh.”
“He hid in a locker. It took forever to find him.”
“That’s an exaggeration,” using my most snarky voice.
I turned away from her while I continued to wait for Thorin. If I had seen a locker big enough, I would have jumped in it.
Later in the day, I emailed both her and Mrs. Dean.
Hello. Following up on a brief conversation I had with Miss Jane today. Apparently one day, Thorin refused to unlock the bathroom stall for a period of time. Since then he isn’t allowed to use a public restroom, and the bathroom he uses is not allowed to be locked. I think, Miss Jane, you said you put your foot in the door? I think a kid testing the limits is “typical behavior.” Not allowing him privacy ever again, never allows him to do it right. We are requesting Thorin be allowed privacy in the bathroom like any other student.
Tip: Don’t make a big deal out of it, and he won’t have a show to put on for anyone. Thank you.
Mrs. Dean emailed back offering to create a laminated series of cards with the steps of appropriate bathroom behavior for Thorin. Why did she think the problem person in my email was Thorin? I also knew Thorin would have a field day with those cards. And some part of me wanted to agree, only to see what the cards would look like, but I went to the principal instead. I was shocked because she agreed with me. She told both Miss Jane and Mrs. Dean that Thorin deserved privacy and to stop making it an issue.
I didn’t trust Miss Jane to make on-the-spot decisions in Thorin’s best interest because her instinct was to infantilize him. Ward and I didn’t believe in taming Thorin’s development by physical control. Similar to any child, Thorin put us through the paces: running in the street, hiding in the clothing racks at Target, throwing objects, leaving the house without our knowledge, hiding my keys, etc. The list was extensive—no different from other children.
We had been lucky to have Sherry, Thorin’s foster-mother, as our parent coach. One of the best suggestions that she gave me was not to control Thorin, instead teach him self-control. She told me about a former foster child who was a six-year-old girl. Sherry’s home was her third placement, and the girl was known to be a “runner.” When she ran for the first time, Sherry shouted after her, “If you see a bear, stop running!” The girl turned around and went back in the house. I told Sherry if she ever wrote a book about her exploits as a foster mother she should use that advice as the title.
Not Always Happy Page 17