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
