posted Thursday February 2nd, 2017
I got an earful from the social studies teacher today at parent/teacher conferences.
Apparently Sophie has had a crush on House Speaker Paul Ryan since the fall, which causes her great consternation as she tries to juggle his appearance (good) with his politics (bad), I was told. Today, when the social studies teacher announced to the class that Rex Tillerson had been confirmed, Sophie had a question.
“Is he cute?”
Ah, so she’s about as shallow as most of America.
This guy obviously adores Sophie — all her current teachers seem to — and they love to share stories about her. I love to hear them, to imagine what her hours away from home are like. To know that with some support, she’s thriving alongside her typical eighth grade peers. And even providing a little comic relief.
I was still feeling high from laughing with the social studies teacher when I sat down at the English teacher’s table. This stop felt perfunctory. English is Sophie’s strongest academic subject, and I already knew she was doing relatively well. We talked about her current studies and the challenges of understanding inference, and then the teacher mentioned the next story the class would be reading.
“It’s `Flowers for Algernon,’” she said, eyeing me carefully. “Maybe you’ve heard of it?”
I felt the air go out of me like a balloon.
I swear I could even hear the hissing sound and I looked around to see if anyone else could hear it, too. My cheeks were hot.
“Yes,” I said. “I know about it.”
When Sophie was a toddler, I did some research into the drugs they say might someday boast the IQ of a person with intellectual disabilities. There’d been a trial, the Wall Street Journal reported back then, and a young person with Down syndrome participated. The results weren’t Charlie-Gordon-amazing, but they were pretty remarkable. And then the trial ended and the family couldn’t afford to pay for the drugs and things went back to the way they were.
This haunted me.
I traveled to Stanford to meet with the guy heading up a lot of this research. He told me that there would not be such a drug, at least not in Sophie’s lifetime, that would give her a permanent boost. He left me to his researchers, who gave me a quick tour of their lab and gently pushed me out the door, encouraging me to give her ginko biloba, pointing to a tree outside the lab. I left and picked a piece of the fruit and and wrapped it in a napkin and put it in my purse. It’s sitting on the windowsill of my office, all these years later. (All of this is reported in more detail in my book.)
So yeah, I’ve heard about “Flowers for Algernon.” I’ve read it several times. I loved it as a kid, and I love it as an adult — although now with a shimmer of pain.
I don’t know why I was so surprised to hear that this middle school classic was going to make an appearance in Sophie’s eighth grade English class, but I was.
I’m worried. This is a kid who knows she’s different and isn’t happy about it, who regularly tells us she doesn’t want to have Down syndrome. Is she going to read this story and want to know where her magic pill is?
I would. Fuck, I did. As soon as I heard there might be a pill I chased it all over the place. These days researchers are more optimistic, they think such a pill is close to reality. More likely, it will be something to stave off the effects of early-onset Alzheimer’s. (A good thing, since everyone with Down syndrome has the plaques on the brain that strongly indicate that early-onset is coming.)
Maybe she won’t make the connection, Sophie’s aide said.
Maybe she won’t. But what if she does? As I’ve asked so many times in the past, what if she’s just smart enough to know she’s not smart enough?
I called Ray and told him about it, fully expecting him to tell me I’m overreacting. He was quiet.
“I don’t like that,” he said.
Me either. But in some ways, the most important ways, isn’t this what school is supposed to be about?
(Image by Monica Aissa Martinez.)