So I’m doing this reading tonight. Don’t be offended because I didn’t invite you. I didn’t invite anyone, not really. I screwed around on Facebook, trying to post something, but I’m not sure that worked. Anyhow, I’m doing this reading. I’m reading the original version (with some tweaks) of the piece I did for This American Life. I wrote it this spring. A lot has happened since. Nutty.
P.S. Apologies for the formatting. I tried to fix it. The bold and change of font are not on purpose.
No sooner had we fixed Sophie’s heart, than her brain came up as a topic of conversation.
Looking back, the heart was an easy fix. Half the kids with Down syndrome are born with heart defects, and Sophie’s is the most common. When she was four months old, the surgeon opened her chest and patched a giant hole in her heart. When she was 4 years old, she sprung a leak. They sawed her open again last November, and five days after surgery, my husband Ray and I had to keep Sophie from dancing across the kitchen floor with her older sister Annabelle.
If she’d been born a few decades ago, Sophie would have been dead by now. There was no way to detect a heart condition like hers, let alone fix it. Now, medical science has the heart nailed. Matters of the head are more complicated. There is no pill, no operation. Not yet, at least.
And so, in early February, I perched my butt on a tiny navy blue plastic chair in Sophie’s classroom, and faced her team: the pre-school teacher, speech pathologist, occupational therapist, physical therapist, principal and psychologist.
These are incredibly nice people. When Sophie had her surgery last fall, the speech pathologist made her a book, a looseleaf binder filled with photos of the school, the hospital, Sophie, her classmates and teachers. She’d even gone online and found a photo of the heart surgeon.
“I had to go the hospital and have an operation,” the caption under a photo of Sophie reads.
On the next page, there’s a cartoon of a kid yelling, “Oh Phooey!”
“The doctors were really nice.”
A cartoon of a kid yelling, “Hooray!”
“My teachers missed me.”
“I’ll be back at school soon.”
Sophie had the book memorized in a day, and still risks avalanches in the playroom to dig it out. These people love her. I know that. They are also bound by state and federal law to do all sorts of things I don’t quite understand, but always suspect have to do with saving money.
The shrink, a gentle man with a good reputation (I can’t help it, I’m a reporter, I check people out), started.
“We’ve called you here today to ask you to sign some paperwork, so we can test Sophie. We don’t think she qualifies as mentally retarded.”
You don’t think she what?
Ever since Sophie was born, I’ve grappled with a lot of stuff about Down syndrome, but mostly with this whole mentally retarded thing. There’s a set of rules that must have gotten lost in the mail. Apparently you’re allowed sympathy for a baby who needs open-heart surgery, but it’s not politically correct to whine that your kid is dumb.
The other day I told a colleague at work that when Sophie was born, I considered choosing a different name. We’d planned for months to name our second daughter Sophie Rae, but it occurred to me when she was a couple days old that Sophie means wisdom in Greek. It was only for a split-second, but I did think about it, something I shouldn’t have admitted to that colleague, who – for her own split-second – looked like she might throw something at me.
Hey, I’m just trying to prepare myself, something I didn’t do before Sophie was born, which is so completely out of character for me I must be meant to have this kid. I don’t really know what it means to be around a mentally retarded person. I’ve never lived with one, or even had much of a conversation with one. Until I had Sophie, I avoided that bagger in line at Safeway. To me, retarded is defined by being in anything but the high reading group. (Math’s a whole different story.)
I arm myself with humor and try to avoid denial. At the same time, I know the world expects me to expect greatness in both my kids. And I do, really I do, but some days I just don’t know what that greatness is supposed to look like or what I’m supposed to do to get either kid there.
“We don’t think Sophie qualifies as mentally retarded,” the psychologist repeated. “We want to test her to find out. You need to give us permission to do that.” He shuffled a pile of paperwork.
I so wanted to celebrate. But I couldn’t. I had to ask a question I knew the answer to.
“Why? Why wouldn’t Sophie be retarded? Isn’t mental retardation included in the formal medical definition of Down syndrome?”
“Early intervention,” he replied, expecting that question, and the next one.
“And what if she does qualify as not mentally retarded?”
“She’ll lose her early intervention services.”
When Sophie was just a few days old, someone who knew someone who had a niece with Down syndrome warned me that it’s really important to get early invention services going between 0 and 3. I had no idea what she was talking about. I thought occupational therapy was when they taught brain-injured people how to operate a snow cone machine. (I guess that’s vocational therapy.) I thought she meant 0 to 3 months.
I finally found Sophie a physical therapist when she was about 9 weeks old. The woman looked at me and said, “Um, there’s not much we can do right now.” It was several more weeks before I woke up one morning and thought, “OH! Zero to three YEARS.”
(You gotta wonder who the retarded one is.)
I know all about early intervention now. These days, Sophie gets two hours a week with a physical therapist, one each with speech, occupational and music specialists, and more at school. It’s taken me years to find these people; they’re in high demand. They’re expensive, too; the state pays for all of it through a long-term care program. To qualify, you have to have one of four conditions: autism, cerebral palsy, epilepsy or mental retardation.
Not Down syndrome. Mental retardation.
I looked around the table. The therapists and the teacher and the principal looked back at me. I signed the paperwork. I could have refused, but that would have pretty much brought Sophie’s public school education to a screeching halt. And I’ll admit it. I was curious.
They sent me home with a copy of my parental rights and a pink paper heart that Sophie had cut herself, with minimal assistance. This was huge: She might be relatively smart, but no one (not even parents who love her, or school administrators trying to save money) can deny that this is a kid with challenges. She didn’t walk til she was 3, and at that it seemed like a miracle. Her vocabulary is good, but the low muscle tone associated with Down syndrome makes her almost impossible to understand. And the occupational therapist isn’t sure she’ll ever be able to write; she hopes someday Sophie will be able to sign her name. Cutting out a paper heart is huge.
I got in the car and immediately emailed Trish. Trish is the most maternal person I know, and one of my oldest and dearest friends. She sat up with Ray and me all night when we had Annabelle (although she didn’t watch the emergency C-section. We’re not that close.) When the blood test results came back for Sophie, I called her second, after my mom. Actually, I might have called her first. I don’t remember.
She rushed over to the hospital with a stuffed leopard. Her kids Zach and Abbie, now teenagers, are funny and wise, and all my other friends meet them and say, “That’s what I want my kids to be like.”
“Hey, get this,” I pecked out on the iphone. “I had a meeting at sophie’s school today. They do not think she is retarded.”
I knew what she’d say, and I needed to hear it. Several times now, when she’s busted them for using the word retarded, the admonition being, “I thought we weren’t going to use that word because of Sophie,” both of Trish’s kids have told her, “But Mo-om, Sophie’s not retarded.”
The reply was quick:
“Okay, no duh. The school confirms what Zach and Abbie have been saying for years. I also am convinced that when Sophie looks into my eyes, she is looking into my soul (and she doesn’t always like what she sees).”
That is why I love Trish. Also for the panicked phone call I got several days later.
“Oh shit,” she said. “I keep thinking about how that response I sent you wasn’t the response you needed to hear. This whole retarded thing is probably full of problems, it probably means she’ll lose her services, right?”
Right. Or at least, I thought so. No one could tell me for sure. I called the Center for Disability Law and the guy I talked to spent the whole time saying, “Wow, I’ve never heard of that. Are you sure? A kid with Down syndrome who’s not retarded?”
His advice: Don’t show the social service agency the test results. That way she won’t lose her early intervention.
“Um, is that legal?” I asked.
“How would I know? I’m not a lawyer.”
Sophie was starting to look pretty darn smart, by comparison.
The teacher emailed me to say the test results were in. Could we meet again?
I emailed back. Yes, I could meet.
I couldn’t wait. I had to ask. “She still qualifies as M.R., doesn't she?” I wrote. “I know you can't say, that's just my prediction -- services aside, of course that will still make me a little sad. This whole thing has been a little like "flowers for algernon" -- did you ever read that story in school?”
Yes, she’d read the story. It made her really sad. And no, she told me, Sophie does not qualify as MR. We scheduled the meeting and the teacher sent the test results home. Sophie’s IQ is 83. The cut-off for mentally retarded is 70.
Sophie, the test said, was able to correctly identify the color of her shoes (pink) and her pants (black). When asked her age, she said, “Four, almost five.” The test said a lot more, and concluded she had “below average intelligence”.
That startled me. I was so used to seeing the word retarded, it had lost meaning. How dare someone say Sophie was below average?!
Last fall, before Sophie’s heart surgery, I snuck in a quick trip to northern California. I met with a doctor at Stanford who is researching brain-boosting drugs. He believes he can stop early onset Alzheimer’s (almost always a byproduct of Down syndrome) and that someday, there will be a pill that you can give to a person with Down syndrome that will boost her IQ by 20 points.
The doctor showed me a power point presentation and asked if I knew anyone with a lot of money.
Then he dropped me off with the scientists. I showed them pictures of Sophie, and they showed me slices of dead mice. (I wasn’t allowed to go to the basement, to see the live ones who’d been grown with a form of Down syndrome. I guess I could have been a spy for PETA.)
The scientists were really nice. But they all seemed a little uneasy, and kept asking if Sophie was getting early intervention services. One of them, a fellow from the Ukraine, walked me to the window outside his lab, and pointed to a row of trees.
“See those?” he asked. “Those are ginkgo biloba. The one with the fruit, that’s the female. People come here and pick the fruit, and feed it to their kids.”
I got the message.
I left with a ginkgo biloba fruit wrapped in a napkin tucked in my purse. I put the fruit on my windowsill at work. It’s shriveled now.
By the time I got to that next meeting at Sophie’s school, I knew we were screwed. If Sophie wasn’t MR, she wasn’t getting any more services, or at least, very few. I sat at the table, accepted another copy of my parental rights, and looked at the psychologist.
Instead, the principal spoke first. “We all know what will happen if Sophie isn’t labeled as MR,” she said. “She’ll lose her services, services we all believe got her where she is today. And so you have a decision to make. You tell us what to do. You have to decide today. You can label Sophie as mildly mentally retarded, and she can keep her services. Otherwise, she’ll lose them.”
I knew the answer to the question, but I had to ask.
“What if I don’t label her mentally retarded? What will that get her, other than bragging rights for her mother?”
So I signed the paperwork. The principal was nice enough to write on the forms that the team, including the mother, “agonized” over the decision. The psychologist left the room, and edited the test results. The numbers stayed the same, but he added a part about how it was believed the results were inflated, due to early intervention services.
I bit my lip, wishing he could write something else.
As usual, Ray broke up my pity party. After the meeting, I explained to him what I’d done, that they’d asked me and I’d told them to label Sophie mentally retarded.
“Well,” he chuckled, his own defense mechanisms firmly in place. “That was a no-brainer. Sophie is retarded.”
“I don’t know,” I said, tentatively. “I think she’s pretty smart.”
“You know how I know Sophie’s retarded?” he asked. “Because when you play Memory Game with her, she gets as excited about the last match as she does at the first.”
I had to laugh, and I had to agree. It’s true. Right now, I find that endearing. Maybe in a few years, I won’t.
Yesterday, my mom took the girls and me to see the live Sesame Street show downtown. When the lights went down, Sophie was beside herself, squealing, shouting, about as excited as a human being can get. My mom and Annabelle and I all grinned at each other.
And then suddenly, out of nowhere, it hit me. I’ll be taking Sophie to see Elmo when she’s 20, and she’ll be just as excited as she is today. I sat back, a little winded. I swear, I’m not making this next part up: A moment later, I looked up, and there, in the dim light, I saw the silhouette of a short, squat person – I couldn’t tell if it was a man or a woman, but from the side, the features were unmistakable, the tiny nose, the flat head, the bent posture. The person disappeared down a row and into the crowd, but not before he or she had confirmed the future.
We all worry this stuff to death. Maybe it would be best to take a 7 year old’s approach. The night before Sophie’s fifth birthday, Annabelle finally started asking questions about her little sister. When she was done, we sat on the couch, quiet.
“Does it make you sad,” I asked, “that Sophie’s different?”
“No,” Annabelle answered. “If that’s her, that’s her.”