Last Thursday was kind of a crummy day.
First there was Jack’s IEP meeting, where his team gets together to discuss his Individualized Education Plan. Now, I know I’m unusual because I actually love Jack’s IEP meetings. I love everyone there and we’ve all worked together for over six years, and for an hour we trade stories and laugh and have a good old time. This meeting was no different.
Except we had to talk about Jack’s transition to middle school.
Ever since his older brother, Joey, started fifth grade in September, Jack’s been closely monitoring the intricacies of middle school. “Your locker. You put your jacket in there?” he’ll ask. Or, “Who is your teacher for French. The language.” The timing has coincided with Jack’s discovery of his own autism, his own diagnoses, his own differences.
One afternoon he and Joey were sitting at the counter, and Jack instructed me, “Call Mr. Fournier. Tell him no aide for me next year.”
Joey piped in, “Well, Jack, you might get lost. You know, switching classes and your locker and everything.”
Jack rarely makes a lot of eye contact unless we prompt him. But at the counter with Joey, he turned and leveled his gaze at his older brother, and asked evenly, “Do you get lost. When you go from Miss Opitz to Miss Hayward’s class?”
“Well, uh, no,” he answered.
“Well, Mr. Fournier doesn’t really decide that stuff,” I told him. “He’s the principal. Your team makes those decisions.”
“My TEAM? Who is. This team.”
“Yeah, mom, this one’s yours to handle,” Joey said, popping a handful of pretzels in his mouth and sliding off of his stool.
At the IEP meeting on Thursday, Jack’s team and I did just that: we handled it. We talked about Jack’s yearning to be just like everyone else; to stay in the classroom and not go to speech anymore and to be independent of a paraprofessional. Sitting next to his teacher, Mr. Hines, it occurred to me that he sees middle school as a chance to start over, to begin anew—to shed autism’s brightly colored skin and morph into the throng of students unnoticed, unseen, un-different.
But in reality, he isn’t ready. Jack will need a paraprofessional again next year. He will need speech and OT and homework modifications. He’ll go to a class called “Skills”, and learn practical things like study habits and organization skills. There won’t be French for a while, maybe ever.
I nodded my head and agreed, yes, oh, yes, this is all good stuff. And it is good stuff. But inside a small storm was breaking out inside of me. Jack was going to be devastated.
As I left the meeting I forced a smile and said, “Well, he’s very excited about his solo in the concert tonight!” Both Mr. Hines and the case manager looked at me, confused. “Solo?” Mr. Hines repeated.
“Yes, he told us he’s singing a solo of at the cabaret tonight. Beauty and the Beast. Should be interesting!”
On the two-mile drive from the school to our house, I thought about my own fourth grade teacher, Mr. Cehanowicz. He was tall with a moustache and he wore plaid shirts. He used to tell us that problems are like a piece of paper because there are always two sides.
When I got home I had to make a phone call to the ski resort where we were taking the kids for the weekend to confirm Jack’s lessons with the adaptive program. The bubbly woman on the other end confirmed that yes, he was all set up for two days, and it would be $199 extra. Per day. “And that doesn’t include rentals!” I felt a flash of frustration when I hung up the phone.
Please understand. This is not about the money. We have the money and we will pay the money and it’s not the thing. The thing is it just stung. It felt a teensy bit like “Oh, we’re so sorry your son learns differently but it’s going to cost you. Now give us your money.”
Standing in my kitchen with my keys in my hand, something washed over me that I couldn’t name. I felt low, empty. I turned to walk out the door to pick Henry up from preschool, but the phone rang again.
It was Jack’s case manager, calling to warn me there had been a misunderstanding, and that Jack actually did not have a solo in the concert that night.
When he got home I explained to him he would only be singing with the general chorus that evening. No solo. I braced myself for impact, but he just looked at me and said slowly, “I won’t? Sing Beauty and the Beast by myself?”
“No, buddy, not this time.”
As the poem goes, autism’s storms come in many forms. (That isn’t actually a poem. I just made it up. But it is true.) This time though, instead of the violent tornado that say, new glasses or the wrong color play dough can bring on, it was more like slow squalls gathering speed until we left for the cabaret.
“What do you MEAN I do not have a SOLO??” he shrieked on the way out the door.
One we got into the cafeteria he stalked over to where the chorus was sitting on the risers, his gray jacket balled up under one arm. I had a very bad feeling.
After the chorus finished their group song—I think it was something about Valentine’s having hearts but I couldn’t really tell because I was watching Jack so intently—students started to ascend the stage for their individual performances. After a moment he was up from the risers and perched on the stage, trying to inch his way closer to the microphone, until Joe hustled through the audience to tell him to move, to sit with the others.
I watched Jack remove his glasses and vigorously rub his teary eyes. At that moment, I wanted to take him by the hand and lead him off the risers and signal over my shoulder for the rest of our family to follow me out the door.
But I didn’t. Time and time again he hopped into the audience to find us, to complain, and we told him he needed to go back and sit with the chorus until the concert was over. He came back and sat on the edge of Joe’s leg while Rose sat on the other. She reached up and patted his cheek—a gesture he will only tolerate from her—and told him, “Go back, Jackie. I want to hear you sing.” And he did.
Once we were home I couldn’t shake the frustrated feeling that had nagged at me all day. As Joe headed out for his monthly poker game, I started to cry.
“But he doesn’t even care anymore, let it go,” Joe suggested helpfully.
This didn’t help. Because sometimes, I just want to hurt. I don’t want to blame anyone and I don’t want it fixed. Sometimes, I want to fully experience the heartbreak of elevated pricing and no solos and I do not want an aide.
In the book I wrote about how I never felt grief when Jack was diagnosed, that we knew it was coming all along so I didn’t mourn it’s arrival on a crisp white form. But the truth is I grieve it a little every day.
Because if I don’t—if I do not let myself mourn the seemingly small losses—a larger tidal wave might sweep me into a sea of rage and bitterness and resentment.
Once Joe left and I ushered the kids to bed, I gave myself a few minutes to do just that. I sat on my couch in my black bathrobe and thought about the day; how to break the news to Jack that he’ll have an aide in middle school and paying more for ski lessons and the way he mouthed the words while everyone else sang their solos and duets.
Alone on my couch, I thought again about Mr. Cehanowicz and his plaid shirts. He was only partly right. Yes, there are two sides to a piece of paper, but most problems have many more. There’s your side and my side and autism’s side and the ski resort’s side. There are misunderstandings.
In fact, a problem is more like a prism with many angles of light and darkness and frustration and disappointment and love and color. They are complicated. They demand reflection. Sometimes, you have to look very hard for the rainbow.
Maybe the best skills I can teach Jack are not how to ski down the mountain or sing alone on the stage, but how to see every side of a problem; to mourn the loss of French class but celebrate a ride on the chair lift, no matter how much it costs.
To see that he may not always get a solo, but he’ll forever have a pink sister who loves to hear him sing.