Not Always Happy

by Kari Wagner-Peck

  “We’ve never heard that explanation before. Is that in your report?” I asked hoping it wasn’t too late for this information to be distributed to other staff members.

  “I haven’t written it yet, but, yes, I will include increasing work on proprioceptive awareness.”

  We also found that Thorin had been separated from his class during the school year more than we were led to believe. During those times, he was working with the special education case manager, Mrs. Mallory.

  “Why didn’t we know that?” asked Ward.

  The principal spoke up. “His IEP states 60 to 90 percent of the time in the regular classroom.”

  “I didn’t remember such a wide margin,” I said.

  Turning to Mrs. Mallory, I asked, “What was he working on with you?”

  “Various things.”

  The principal interrupted, “Why don’t you meet privately with Mrs. Mallory and get those questions answered. She can also go over summer school options.”

  After the meeting, Ward and I talked in the car as we drove back to work.

  “I can’t keep up. It’s too much information.”

  “I know,” he said “But we’re fine. We’re figuring it out.”

  I needed to believe that against all reason. Reason was telling me the school might have a vested interest in Thorin being special. It could’ve been unconscious like Abraham Maslow’s observation: “If you only have a hammer, you tend to see every problem as a nail.” But what if they thought he was a problem?

  The next week, I met with Mrs. Mallory.

  “It must have been hard to hear Thorin can’t attend regular summer school,” she said sympathetically.

  “It was hard to hear.”

  “Would it be nice to hear some options?”

  “Yes.”

  She showed me a chart with the summer school options for special education students. She kept it close to her, so I wasn’t able to read the words. In the first option, she told me the students didn’t have any regular interaction with people outside the classroom. It sounded like the dungeon room in Game of Thrones; you’re not sure how you got there, but clearly someone doesn’t like you.

  “We don’t want him there do we?” she said as she patted my hand, smiling and shaking her head.

  “No.”

  She ran her finger over the descriptions of the next three rooms, making thoughtful murmurings. Surely she’d seen this chart before this moment but she was acting like it had just been flown in by a three-eyed crow. Finally, she looked up at me.

  “No! No! No!” she said dismissing them. “Not for him!”

  I was relieved but I had no idea why. As she read the last description silently, her mouth broke in a wide smile. She tapped her finger excitedly on the paper, “This one has a lot of support!”

  I shook my head, “Why can’t he be in an inclusive classroom in the summer?”

  “They won’t give him an aide,” she replied—“they” being the Tywin Lannister’s in the district office.

  “Um, I’m comfortable advocating for an aide.”

  “He won’t have as much fun in the regular classroom.”

  Seriously? Other kids are in school to learn. The expectation for Thorin is not to mitigate the fun factor.

  “Do they work on reading and writing there?” I asked. “Because he can’t do those things yet.”

  “You know what you are? You’re a pioneer!”

  “What?”

  “You’re undertaking something that hasn’t been done before.”

  “Inclusive summer school?” I guessed.

  Mrs. Mallory’s illogical cognitive leaps were exhausting me and caused me to forget to ask what she worked on with Thorin during the year. These people were so much better at excluding Thorin than Ward and I were at trying to get him included. But then again, they had 400 years of experience keeping kids like him out altogether.

  The Individuals with Disabilities Education Act (IDEA), ratified by Congress in 1975, ensures that children with disabilities have the opportunity to receive a free, appropriate public education in the least restrictive environment, just like other children. How was what we were asking for considered radical in 2012? I couldn’t believe anyone in our city or state had never asked for their child to be in an inclusive summer school classroom.

  I tried finding another parent who had accomplished this near-Herculean task. I posted my question on the Facebook page of the local Down syndrome parents’ group. No one who responded even mentioned summer school. Most of the comments came from families who lived in rural Maine, and their stories were worse. Parents shared that their school could not accommodate inclusion at any time during the year; others shared that their child was bused to a developmental classroom fifteen miles away from home and the school their siblings attended; and some were in legal battles with their school districts.

  I called the office of our state university, which specialized in inclusion and disability. The adage “Those that can, do. Those who can’t, teach” was apt in this case. I spoke with a professor there who was supportive, but I knew more about the school system and barriers to inclusion than he did.

  With no evidence of inclusive summer school in Maine, I emailed the director of special services in our district, Joan Croft, hoping for at least a response. Eleven minutes later, I got back a four-paragraph email on the merits of inclusion! She also wrote that we should get together and talk. I was dizzy with glee.

  The following week, I arrived for our meeting. I wanted to project myself as a calm and engaged parent; I wore a pencil skirt and sensible heels. She rounded the corner of the reception area as I came in. It was casual Friday; she had on jeans, a white T-shirt, and a tan blazer. I was impressed that she came to escort me to her office. During our conversation, I thanked her profusely for her commitment to inclusion.

  “It doesn’t make sense to support inclusion only nine months out of the year. It’s backpedaling,” she said.

  “Exactly!”

  “You contacted me at the right time. We just received a pilot project grant for kindergarten and first grade inclusion summer school.”

  “What? Oh, my gosh! I can’t believe it!” Talk about your wildest dreams being answered.

  She laughed good-naturedly then asked me, “Would you want Thorin to attend?”

  “Yes!” I said. “We would like very much for him to attend.”

  She went on to explain how the class would operate.

  “Because it is true inclusion, there will be a fifty-fifty ratio of students with and without disabilities. We will have co-teachers and an aide for support. Right now, it looks like eight or nine students. The students are coming from all over the city so everyone will be new.”

  What the director described was exactly what I had been reading about in books and had heard at a recent conference on inclusion.

  “It sounds perfect! I have one more item. Thorin needs a communication device at school. He uses Proloquo2Go, which he loves. So much of the frustration is from him not being able to talk or be understood.”

  “Let’s get him an iPad and the program! I’ll have it at the summer program!”

  I thought I was going to end up on the floor sobbing with true gratitude. We were finally on the right track!

  Kindergarten came to a close. Despite the challenges, Thorin ended on a good note. Ms. Charles and Lo-Lo had been on his side. He clearly adored them both. Lo-Lo announced she was retiring. She told him, “I’m lucky you were my last student, Thorin.”

  Ms. Charles pulled both of us into the art room on the last day of school. A couple of teachers were putting the finishing touches on gifts for Lo-Lo’s retirement party. They had matted and framed a painting made of the handprints of the students in Thorin’s class. Their other creation was a pair of over-sized, yellow glasses for her to wear at the dinner. The eyeholes had capital Ls on both sides of the openings so it spelled out “Lo-Lo,” the name Thorin bestowed on her. The glasses were yello
w because it was Thorin’s favorite color. Thorin and I both squealed and clapped.

  Thorin wouldn’t start summer school until July. He spent a lot of time with Bubba while Ward and I were at work. He would bring his iPad with him on his visits. The iPad also had a camera, which we didn’t give much thought to.

  When I got home one afternoon, my mom pulled me aside. She pushed the camera icon on the iPad screen and revealed a photo of Thorin—more accurately a selfie. The image was Thorin’s bisected face peering into the lens of the camera; his hand was placed along his jaw with his fingers partially curled except for his pinky, which pointed toward the camera. The background was the top part of the kitchen door molding with a bit of the wall and ceiling.

  I looked at my mom. “It’s such a private moment.”

  She nodded, “There’s more.”

  We moved from one image to another. In total, there were twenty-three selfies from that particular vantage point, but in each he did something a little different, showing more of his face, less of his face, or a different expression.

  “These are good, right?” I asked.

  “I think they are.”

  After we scrolled through the selfies, we found photos of a box of Life cereal, his favorite at the time.

  “That’s very Warhol!” I said, and we both laughed.

  We told Thorin how much we enjoyed his photos.

  “You like taking pictures?” I asked.

  “Yesith! Yesith! Yesith!”

  “Do you like . . .”

  Thorin interrupted, “No. No. No.”

  “Thorin wants to take photos, but he doesn’t want to talk about it,” my mom offered.

  A couple days later, Thorin took his iPad to a doctor’s appointment. While I waited in the reception area, Ward went with him into the hall. Thorin took photos of stairs, hallways, windows, plants, furniture, and a skylight. None of his shots were straight on or centered, and he favored a right angle of partial images. We had gotten the iPad for Thorin to be able to communicate with the world, which he was doing through his photos.

  As we were leaving for a walk a few days later, Thorin grabbed his iPad. I noticed he would take a photo then view it and reshoot, if necessary. He might do that three or four times until he was satisfied. On that walk, he took some little portrait shots of the dogs and one of Ward and me. The rest were more documentary images, such as trees and electrical poles bisected horizontally by a train moving through the scene or a car bisected vertically by an electrical pole. There was a beautiful shot of Ward walking from behind framed by electrical wires, the street, and curb.

  Thorin was showing his photos to other people and enjoying the praise he got. He did not want to be asked to take photos. He had no interest in someone picking the subject to be photographed. It was clear Thorin had his own ideas and vision.

  Even though Thorin enjoyed spending time with Bubba, summer school soon arrived. The school was in our old neighborhood, and Thorin had been at the playground countless times—both Ella and Evvy attended school there. When we walked in, there was general confusion with multiple programs starting at the same time as well as specific confusion about where his aide was.

  Thorin and I stood in the reception area waiting for her. I wanted him to meet his aide before he got in the classroom. She arrived late, complaining the rain had made her trip from the suburbs longer than anticipated. She was in her fifties and wore a red slash of lipstick, a black turtleneck dress, and a belted trench coat. Instead of offering her name, she said, “My hair is a disaster!” I waited for her to sort herself out before I introduced Thorin and myself. When she finally looked at Thorin, she blanched. I instantly despised her.

  Smoothing her hair she said, “I haven’t worked in years. I was a social worker. I’ve never worked with a . . .”

  I decided to help her out for Thorin’s sake. “With such a young person? Is that what you were going to say?”

  “Sure.”

  I insisted on walking him to the classroom with her. I was shocked by the size of the other children. I realized Thorin was quite small, yet they looked like giants. When I finally got the teacher’s attention, I made introductions.

  “Oh, hello! Excuse the first day chaos,” she responded.

  “No prob. These kids are all in kindergarten or first grade?”

  “No. They’re in second to fourth grade.”

  I had a sinking feeling. “Where’s the inclusive classroom with the younger children?”

  “I don’t know.”

  I told Thorin we would have to go back downstairs. As we were leaving, a woman introduced herself to Thorin and me. She was from the special services department at the district.

  “I wanted to make sure everything went well today.”

  “Oh, thank you! I was just going downstairs to find out where the inclusive summer program meets.”

  “Not necessary. This is Thorin’s classroom.”

  “He’s six. He hasn’t been in first grade yet.”

  “Don’t worry.”

  I should have left with Thorin but I didn’t. I thought—as Tim Gunn had advised Project Runway designers for years—we could make it work. Also the act of leaving school was counterintuitive. Where would Thorin go?

  When I came back a few hours later to pick up Thorin, I found out that none of the students did much of anything. Whatever this program was, it had been slapped together starting that day. I also found out that all the students in Thorin’s class knew each other because they attended the school year round. I was relieved to know Thorin’s speech therapist and occupational therapist from kindergarten were visiting almost every day to work with him.

  The second day was somewhat better, but the teacher seemed overwhelmed, which I could understand. She had no time to plan for the session, hitting the ground running the day before. Thorin’s aide—whom I had privately christened Mrs. John Updike because of her 1960s mentality, her narcissistic ways, and the fact she was a boob—told me Thorin refused to go back to class following break. After twenty minutes, the speech therapist intervened and told him to get back to class, which he did. Mrs. Updike then told me that she was “hoping to get some magic words from the speech therapist,” so he would listen to her. I was hoping for some magic words to turn her into a toad.

  It wasn’t like Thorin not to go back in to the classroom. A witness to the event told me Mrs. Updike was literally pulling at her hair in frustration. I knew Thorin would find that irresistible. The program was four weeks long; it had to get better quickly. I emailed Joan Croft, who I thought was my inclusion maven.

  We are not happy with the summer program Thorin is in. It seems very unorganized. The children are grades older than Thorin, and it’s not inclusive. His aide is not up to the task. We need to get to the bottom of this soon. We look forward to hearing from you.

  She wrote back. Ward and I read her email together.

  I understand your frustration, and we will work to make sure that Thorin is appropriately supported in the program. This program is a “regular education” initiative, not a special education program. As you know, Thorin was scheduled to be in a special education, self-contained program for summer. Then, we received the grant! This is only the third day of services. I will be sending over a teacher consultant to help the teacher and aide. Let’s give it some more time.

  I turned to Ward and asked, “Does that mean she has no control over the program?”

  Ward responded with another question. “Why wouldn’t the special education department be part of the administration of an inclusive program?”

  “Something is off.”

  “I agree. It’s like the inclusion piece is a secret. But from whom? The education department, the teacher, or us?”

  Ward took Thorin to school the next day. Mrs. Updike was less than thrilled when she saw Thorin.

  “I thought maybe he wasn’t coming back.”

  Ward asked Thorin, “Hey, Dude. Can you go to the library while I talk with
your aide?” Thorin was out of earshot before he turned to Mrs. Updike and said, “What’s the problem?”

  “I don’t know how to work with a Down syndrome person.”

  “A person with Down syndrome.”

  “That’s what I said.”

  “No you didn’t. He’s a child who has Down syndrome. He’s not Down syndrome.”

  “They’re sending a consultant for you and the teacher. That should help Thorin,” Ward said, not hiding his disgust.

  When I picked up Thorin, he ran from me through the open theater door on the other side of the hallway. He sat on the stage.

  “What are you doing?”

  “No.”

  “You don’t want to tell me?”

  “No.”

  I went up to him and said, politely, “Please come with me.”

  He stood up and pressed himself against the back wall. I knelt down. I went to pull him toward me. He brought his arm down on my head so hard my glasses fell off.

  “Thorin! What’s happening?” I asked, shaking.

  This was not Thorin. I fought back tears. Eventually, he let me lead him outside and told me he didn’t want to go back to school.

  “Thorin, I’m sorry. I am. Daddy and I can fix this.”

  “No!”

  “A woman is coming to help, okay?”

  He didn’t respond, but his day did get better; we went to see Bubba. Ward and I talked it over when we got home.

  “I understand he’s frustrated, but he doesn’t get to call the shots.”

  “Right, but this isn’t the program we were promised. It’s a shit show there,” I said.

  “Kari, I don’t think we have an alternative. Do we?”

  “No.”