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. Investigators 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
