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.
The upshot for me reading the email was Thorin’s thoughts and feelings were not important. I thought equating brushing teeth with learning a communication program that was as hard as articulating speech was a simplistic comparison to get what he wanted. The “why” of his defensiveness was difficult to understand.
Both Ed Techs and Mrs. Holt shared with me privately they thought the program was too much work. They found it frustrating. All of them agreed Thorin needed more immediate help, but no one wanted to tell a decision maker that. Mrs. Holt also shared she could not do enough for Thorin.
“I have so many children that I can’t work individually with anyone. Thorin is in a speech group, but that’s not enough.”
“How do we do that?” I asked.
“A lot of parents get an outside speech therapist; that way, someone can work with only him. He needs that.”
A week later, he was going to a second speech therapist after school, twice a week. Thorin was motivated and excited to go.
The demands of being an advocate at the school, helping my mom, and working were taking its toll. At the time, I felt like I was riding an endless wave. Sometimes, I was on top of it; other times, I was hit by it and held under. When my phone rang and I saw it was from the school—which was happening a couple times a week—I teared up, and my heart started racing. The usual compliant was Thorin wanted to come home because he was sick.
In January, Thorin said to me, “Help me more. Come school.”
“Okay. Thorin, do you know what the problem is?”
“Yesith.”
“Tell me, Sweetheart.”
“It’s me.”
“Thorin, you are not the problem . . .”
“Yesith! Am!”
I was trying to hold it together, “It’s them, Thorin.” I said it. It was true.
We hugged each other for
