I am so selfish that I actually had the following thought on Tuesday morning:

How dare Eunice Shriver die on Sophie’s first day of school.

I know. I’m horrible. But really, for once, I’d love to have a day that  is just about Sophie.

Sophie. Not my future Special Olympian, my mentally retarded kid — or, as I learned later in the week, my “intellectually disabled” kid.

I don’t know why, probably because I’ve heard the term “mentally retarded” so many times I’m immune to the sting, but I find the phrase “intellectually disabled” far more offensive.

The day after Shriver’s death, Diane Rehm had a man with Down syndrome on her show, to talk about the amazing contributions Shriver and the Special Olympics — and the special olympians like this man! — have made.

Funny, I realized I’d never heard someone with Down syndrome talk on the radio. You almost couldn’t tell, this man’s speech was so clear, his diction so sharp, his vocabulary remarkable. I sat in my car in a shopping mall parking lot, oblivious to the clock. Then one of the other guests, or maybe Rehm herself, said something about being “intellectually disabled”.

I sucked wind. The man I’d been listening to on the radio was definitely the smartest person in the studio that day — he had to be, to overcome the physical and other challenges that stood in his way of having such a good discussion. How dare someone call him intellectually disabled?

It’s all semantics. I know that. The kind of ephemeral stuff people waste hours debating over keyboards and coffees and cocktails.

What matters is that the guy is smart (or whatever) enough to be a super spokesman, to challenge our notions of what someone with his label (whatever you want his label to be) is capable of. Sophie did herself proud, too, her first day of school — her first week, in fact, has gone well, by all accounts. (All accounts I’m hearing, anyway.)

I can put my kid in a pink tutu and polka-dotted shoes for the first day of school, but there’s no way to dress up the terminology. It shouldn’t be about labels, anyhow. It’s all about the individual people. Maybe that’s something we’ll eventually learn from Eunice Shriver and her Special Olympics.

P.S. Apologies for the formatting. I tried to fix it. The bold and change of font are not on purpose.

PAPER HEARTS

 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.”

 “Oh Phooey!”

 “I’ll be back at school soon.”

 “Hooray!”

 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.”

 Oh Phooey!

 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?”

 “Nothing.”

 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.”

That has got to be the worst question I’ve asked since Sophie was born. The second worst: When Sophie was three months old — and about to have open heart surgery — I asked the geneticist whether people with Down syndrome ever have curly hair. (He gave me a dirty look and said no. In any case, I have since noticed some people with DS who DO have curly hair, although it’s true that Ray, Annabelle and I have wavy/curly hair and Sophie’s is the stick-straight stuff I’ve always dreamed of for myself.)

She was in her PJs tonight, about to brush teeth, when I stopped her to ask, “Who do you want to be president?” We had been practicing with Annabelle, earlier in the evening. As I said to Ray this morning, I really don’t care about any other choice on the ballot — it’s a free country, as they say — but I can’t live in the same house with someone who votes for John McCain. Total dealbreaker.

Instead of scoffing, Ray nodded solemnly and agreed that familiarity does indeed breed contempt. (I’ve covered McCain for a long time: www.phoenixnewtimes.com/mccain, in case you really want to read even more about the guy. Which I doubt. I know I don’t.)

Annabelle, Sophie and I were giggling over how funny “Obama” sounds and I remembered that I forgot to order “My Mama’s For Obama” tee shirts. As a journalist I’m technically not supposed to share my affiliation, but screw it, I don’t pretend to be unbiased. I already have a good luck charm around my neck that says Obama; I’ll have to turn it around tomorrow night, when I’m covering the McCain rally in Phoenix. (Just color commentary – and to balance things, I’ll be there with our paper’s arch-conservative.)

Anyhow, I asked Sophie who she wants to be president and she yelled, “ABBIE!”

Which is pretty much what she yells in response to most any question, these days. She’s obsessed with our 13 year old pal. It was a completely appropriate response for a 5 year old, with Down syndrome or not, which is why I don’t know understand why the question suddenly popped into my head.

“Will Sophie be able to vote?”

As a one-time political reporter and current citizen of the world, I should know the basics of the Voting Rights Act, not to mention the Constitution, but shoot me — I don’t. Or I did and forgot. In any case, I had to ask Ray.

He smirked. “There’s no IQ test to qualify to vote!”

“Are you sure?”

“Yes.”

But of course I had to Google. It took a while to find the answer, amidst all that really smart talk (not) about who’s more retarded — McCain or Obama, Republicans or Democrats, and don’t get me started on the commentary about Sarah Palin.

Finally, I found it. As always, Ray was right. No, there’s no qualification. You just have to be a U.S. citizen and of age. But I wonder how hard that would stick, if challenged. Many states have specifics written into the statutes that stipulate that people with developmental disabilities must be allowed to vote. There’s got to be a reason.

Oh, and by the way, Arizona has no such stipulation. Neither does Alaska.

I sat and thought hard about it. What do I really think? Should anyone, regardless of mental capacity, be allowed to vote? I pushed all the political jokes out of my head and forced myself to be honest. And my honest answer is that I don’t know. I really don’t.

If I had to guess today, I’d say that Sophie is darn well on her way to knowing just what’s up, by the time she’s 18 if not before.

But can I imagine (indeed, have I encountered) adults who are clearly not capable of discerning between the two people at the top of the ticket, let alone below? Yeah. I can.

And yet they clearly deserve the right to vote, if only because of the slippery-slope factor. The potential ramifications, taken to the nth degree, are too horrible to imagine.

Hey, I don’t know a soul who understands everything on that ballot I’ll face tomorrow, myself included. (OK, maybe Ray. Probably Ray.) Two of my smartest friends begged me for pointers, which I in turn had to beg for from my father — then temper with a big grain of the-guy’s-a-public-utility-exec salt.

In any case, Sophie’s already the best judge of character I know. And that’s what I’m basing my vote on tomorrow. Aren’t you?

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 can deny this is a kid with challenges.

She didn’t walk til she was 3. Her vocabulary is good, but the low muscle tone associated with Down syndrome makes it almost impossible to understand her. And they aren’t sure she’ll ever be able to write her name.

So cutting out a paper heart is huge.

I left the meeting, got in the car, and immediately e-mailed Trish. Trish is the most maternal person I know, and one of my oldest and dearest friends. She sat up all night with us, the night I had Annabelle. (She didn’t watch the C-section; we’re not THAT close.) When the results of the blood test came back, I called her second, after my mom. You know, I might have actually called her first; I don’t remember.

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.”

Me, too.

“Hey, get this,” I pecked on the iphone, that day in the car. “I had a meeting at Sophie’s school today. They do not think she is retarded.”

I knew what Trish would say, and I needed to hear it before I heard Ray’s response, or the babysitter’s. (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 Abie have been saying for years. I am also 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?”

Yes. Well, maybe. The jury’s still out. In the ensuing months, Sophie’s been tested by the school, deemed below average but not retarded, then ultimately labeled mildly mentally retarded when the school officials realized that perhaps she’d lose services because of the lack of the label. (They made me make the call on that one. Fun.)

The school said her IQ is 83; the cut off for MR is 70.

So we’d have all the tools we might need, we had Sophie privately tested this summer. That’s where we went yesterday, to get the results.

I braced myself. I’ve known all along that the “not MR” thing won’t last forever. Soon enough, Sophie will fall behind, as school and life get harder. And I knew that the testing the school did was far from comprehensive, that my little party could end right there on the psychologist’s couch — at my behest, no less. Sort of, at least.

The report was more than 12 pages long, with all sorts of conclusions about behavior and social skills and possible ADHD, but when it came to IQ, the psychologist smiled wryly and said, “I can’t label her mentally retarded.”

Sophie’s IQ, this woman says, is 86.

Three points higher than what they said at school. We all had to laugh, a little.

I know, I know, IQ doesn’t mean anything. But hey, that was better than a kick in the head. I know I still have challenges. And I know I have a smart little girl.

I just wish I could keep up with her.

When we got home, Sophie announced she had to pee. “Well, go to the bathroom,” I said, although I usually accompany her. Maybe I’m holding her back, I thought. She’s smart. I should let her do her own thing. She’ll surprise me.

She did.

Sophie made it to the bathoom, climbed the stool onto the toilet and positioned herself on the Blues Clues seat designed to keep her from falling in.

Then she called to me, because she’d forgotten to take off her panties and shorts when she sat down.

“Don’t worry, sweetie,” I said, as I cleaned her up and got her dry clothes, feeling like I set her up, saying the only thing I could think of.

“Happens to me all the time.”

First, “mental retardation” is a medical term. The IQ cut off is 69. Seventy, and you’re not retarded.

Second, I have spent much of the year considering this topic, particularly since Sophie’s IQ clocked in at 83.

(This was the topic of the piece I did for This American Life, which you can find at www.thislife.org — it ran June 30, the social engineering show. Sophie’s about to pop in the room and my blogging time will be over, so I can’t paste the URL in. Sorry!)

Sophie was not even 5 when they tested her, and some smart people discount IQ tests altogether. So take that 83 for what it might or might not be worth. I took it to a professional, since losing the MR status (while super for me, her bragging parent) could be troubling for Sophie: It could mean a loss in services at a crucial time.

There was some doubt about the veracity of the tests she was given this spring, at school.

So today, Ray and I will meet with the psychologist who has spent the summer retesting her. I’ll let you know the results.

I’m sad, in anticipation. And selfish, I know. But wouldn’t you want to have the smartest little kid with Down syndrome, ever?

Either way, I know I do.

(Well, that made for a nice last line, anyway.)

I haven’t tried it (um, no thanks, don’t want to hear the sound of my own voice again — don’t you hate that?) but looks like you can just click and listen.