Not to be melodramatic or anything, but today something happened that completely shook my faith in everything I’ve come to believe about Sophie in the last 7 years, 10 months and two days — something that slammed me hard, right back into that bed in that hospital where she was born. Where the doctor told us he was wrong, that he’d said the baby didn’t have Down syndrome but the test came back and she did and — well, he didn’t say much after that.

The doctor left the room and I opened my mouth and cried like I’ve never cried before. I cried for Ray and Annabelle and for Sophie, I guess, but mostly I cried for me. I mourned the lives we’d thought we’d have — you always hear that from people who have kids with special needs, and it’s true. And I sobbed out of fear, because I had no idea what sort of person this tiny, yellowish, black-haired baby would be.

And then she grew. And so did I. We got Sophie all the therapy, all the “early intervention” we could scrape together. The helmet didn’t fix her flat head but the heart surgery worked (and when it failed, another operation worked, knock wood) and Sophie learned to walk (finally) and use the toilet (eventually) and she went to school.

Something remarkable happened at school. To a person, Sophie’s teachers and therapists all reported that she was remarkably intelligent. At first I thought they were just being nice, but after a while I leaned into it and it felt good to think that my daughter was smart. A new definition of smart, to be sure, but smart. When Sophie left pre-school there was a lot of talk and testing and scores that exceeded all expectations. I’ll admit it, I got cocky.

This isn’t about entrance to the National Honor Society. It’s about entrance to society in general. From what I can tell, only the smartest people with Down syndrome really have a shot at a quality life — at some measure of independence, love, meaningful friendships and work. I needed to believe that Sophie had a shot at that. Wouldn’t any parent?

In kindergarten, Sophie wrote her name at the end of the first week of school. She learned her letters and numbers and she held her own, and when the school said she couldn’t repeat kindergarten because she’d mastered the curriculum, I believed them. Ditto with first grade.

Sophie learned how to read. I couldn’t believe it, but she really and truly could read. Can read. The glowing (new definition of glowing, but still, glowing) reports continued. Second grade is tougher, for sure, but just two weeks ago, I sat with the teacher and the special ed teacher and they pulled out standardized test results and showed me how well Sophie is doing. How remarkably well.

Sure, I said last month, when it was time for Sophie’s three year re-evaluation. Give her all the tests. I knew that Sophie had behavior issues — trouble paying attention, following directions, probably a full-blown case of ADHD — but she’s smart. Give her all the tests, I told the school psychologist, a woman I’d never met.

Today we had a Big Meeting with all of Sophie’s teachers and therapists, the principal, some lawyers, the head of the district’s special ed program and the psychologist. Ultimately, all the data presented will help determine what services Sophie gets, and how her classroom setting will look — since third grade is a Big Step — but for today we were just reviewing the material.

I had a bad feeling. I’d flipped through the super-thick pile of papers I printed from the file the school sent over yesterday, and hadn’t been able to make much sense of it. Funny, I can analyze all kinds of reports and statistics for a newspaper story, but when it comes to my kid, all the numbers just swim across the page, not making sense. I even fumbled with the cassette player I brought to record the meeting, and I’ve been taping meetings for work for years.

So I wasn’t fully prepared for the numbers the psychologist put on the table. The low numbers. Really low numbers. Eye-stingingly low numbers.

Oh geez, ha ha ha, during the testing, Sophie pushed me every step of the way! the psychologist chirped, laughing. Took off her shoes and socks, pretended to pass gas. You name it.

I didn’t smile, even though I try to be friendly in these meetings. (I hate these meetings, even when good things are said.) Sophie’s lawyer (yes, Sophie has her own lawyer) said something about standardized testing not always reflecting true ability.

Next the academic findings were presented — glowing.

As we neared the end of the meeting, I couldn’t help myself. Look, I said, I need to say this for the record, while the tape recorders are still going. I get that as the mother, my opinion is, at best, flawed but compelling. But I have to say it. You all are reporting that Sophie is doing such amazing things. Reading so well, progressing at math. Terrific vocabulary. The only one who doesn’t have good news is the psychologist. And she’s the only one who hasn’t ever worked with Sophie before, who doesn’t know her.

I know her! the psychologist chirped.

Look, I said to the special ed teacher. I know Sophie tests you, but would she take off her shoes and socks with you?

No, the special ed teacher said softly, looking nervous.

I’m just saying that it seems pretty remarkable that Sophie can do all this stuff you say she can do, and her IQ is so low, I concluded.

Remarkable! the head of special ed for the district chirped from the other end of the table.

“I believe Sophie’s IQ really is 58,” the psychologist said, her voice rising — and shaking a little. “Sophie has the cognitive abilities of a three year old.”

And with that, my world crashed at my ankles. The entire world I’ve built, these last 7 years, 10 months and 2 days. A house of cards, full of platitudes and extra-kind words for the stressed out mom of the disabled kid? Maybe. But it was my house of cards. And now those cards were settling on the industrial school carpet under the big conference table.

Numbers, I can deal with. That comment? No way.

Around that table, silence.

Silence from the adaptive PE teacher, who last month caught me outside school and, with tears in her eyes, told me Sophie was the most incredible kid she’d ever seen — told me she was sure she’d one day live all on her own.

Silence from the teacher who, on more than one occasion, has told me that Sophie is utterly amazing — that with the help of computers, she can’t imagine how far the kid will go. And her reading!

Silence from the speech pathologist, who just moments ago had been going on about Sophie’s vocabulary.

And then several people started to talk at once, about how cognitive tests are almost always given by someone unfamiliar with the child, that a trained professional must administer them.

I get that, I said. I get that. And they moved on.

Not me. The meeting finally ended, and we filed out into the parking lot, but for me it wasn’t over. I couldn’t eat dinner, even though I’d skipped lunch. I rushed off to teach my writing class, then stopped at Target and bought — among other things — the purple nightgown Sophie’s been begging for. I made it home just in time to give it to her (Annabelle got the ballet skirt she’s been wanting) and sing both girls to sleep.

I cried all the way home, and this is terrible, but I was wondering how I’d feel when I saw Sophie. Does she have the cognitive abilities of a 3 year old? Really? Has all the rest been total bullshit? Does it matter? She’s still my dear, sweet, stubborn, funny, smart (yes, smart) Sophie. Even if all my expectations for her have been dashed –for now, anyway — by that psychologist.

Who knows. Maybe that woman did me the biggest favor yet, by telling me the truth. One thing’s for sure: I won’t be on solid ground again for a long time, if ever. And maybe that’s not the worst thing.

Another thing’s for sure: Sophie is still my Sophie, still the awesome girl I sent off to school this morning in her ridiculous Minnie Mouse hat from Disneyland because she absolutely insisted, the one who will find her way into my bed later and kick me all night.

Nothing will ever change that.

It’s better than some of her past “tics” — telling strangers “You’re mean!” or screaming “Buy it!” in stores (my dear friend Robrt’s favorite) — but frankly, it’s wearing. Here’s how it goes:

“Mommy, what day is it?” Sophie will ask — before sun up, if allowed. The days are getting longer, so I’m sleeping less.

“It’s Thursday.”

“What’s happening today?”

“You have physical therapy with Dorcas.”

“What’s after that?”

“I’ll drop you off at school.”

“What’s after that?”

“Courtney will pick you up.”

“What’s after that?”

“You have a play date with Sarah.”

“What’s after that?”

“Daddy comes home.”

“What’s after that?”

“You’ll eat dinner.”

“What’s after that?”

“You’ll do your homework.”

“What’s after that?”

“I will come home and tuck you in.”

“What’s after that?”

“You’ll go to sleep.”

“What’s after that?”

Usually, on principle — and due to sheer exhaustion — I’ll cut her off after we’ve gone through an entire day. Let her, and Sophie will ask you “What’s after that” for a week’s worth of days. It makes me a little sad, this constant desire to know what’s next, this lack of ability to live in the moment. I know it’s just a developmental phase, but it’s made me focus on my own habit of thinking about what’s next instead of reveling in the here and now.

I even bought myself a bracelet at one of my favorite boutiques, Frances, that says, “Live in the present.” (It also makes me chuckle as it serves as a reminder that I really should be less materialistic — living should be enjoyed without presents, if you know what I mean.)

This morning I was forced out of the moment and into the future, as I endured Sophie’s annual IEP (Individualized Education Program) meeting. A group of us sat around a table at the school and went over her goals for the next year.

The adaptive physical education teacher wants Sophie to learn how to hop on one foot. The occupational therapist is working on the number 7 and the lowercase letter b. The speech therapist’s goal is for Sophie to use a sentence with an adjective correctly, 8 times out of 10. (This is just a small fraction of what was discussed, as you might imagine.)

We talked about how well Sophie’s reading, and how (frankly) poorly she’s doing at math. Apparently she brings reading books with her to math class, which was news to me; there will be a new goal in next year’s IEP, instructing her to leave the books behind and focus on the numbers. (I feel Sophie’s pain. The administrators, teachers and therapists never believe me when I try to tell them that Sophie’s challenge is not just Down syndrome — it’s ME. Yeah, she gets the reading from me, but the math, too. And the hopping.)

I think I sucked them dry for every minute of extra help I can get for Sophie — with as much of it as possible happening in the classroom — and was feeling fairly pleased (though wary as always, I hadn’t yet gotten the chance to demand that lunch room help every day actually be written into the IEP, something the principal hasn’t wanted to do in the past, since she’ll be legally bound to provide it) when the special ed teacher presented one more list of accomodations for me to approve.

Test-taking accomodations. I always figured Sophie wouldn’t have to take the statewide standardized tests — including the dreaded AIMS test — that Annabelle takes. She didn’t in kindergarten, anyway. Turns out, kindergarten was an exception. All kids must take standardized tests, and their scores all count.

Suddenly, a light bulb went off over my head. Now I get it. This is why public schools don’t want special needs kids. (Or English Language Learners either, for that matter. They’re included in this f-ed up situation, too.)

And in Arizona, thanks to an incompetent (and that’s a kind description) legislature and a superintendent of public instruction who spends more time, I hear, arranging jobs for his girlfriend(s) with the state than actually paying attention to — or caring about — what’s best for kids, it’s ALL ABOUT THE TEST.

“Oh, I get it now,” I said to the principal. “Well, look on the bright side. At least my other kid sends your averages up, not down.”

She quickly corrected me. She doesn’t care a bit about Sophie bringing down her average, the principal insisted. She simply feels sorry for kids like Sophie who are forced to take these tests.

Uh huh.

In any case, Sophie will be taking them. Yeah, she’ll get all kinds of “accomodations” — a quiet place, extra time, someone to explain things. But still. It’s hardly a level playing field.

The bell rang and the teacher left to lead the Pledge of Allegiance. The rest of us were quiet around the table. The adaptive PE teacher spoke up.

“Hey, look on the bright side,” she said. “You’ll really enjoy reading the test results when they come out and seeing how much better Sophie does than some of the typical kids.”

Is that really what will happen? We’ll have to wait and see. But I have to admit, that made my day.

For today, any way.

It’s barely February, but talk has already turned to What Fourth Grade Teacher Should I Request for Annabelle and What Will Happen to Sophie in Second Grade?

The special ed teacher called yesterday — it’s time to schedule the pre-IEP meeting. Let the games begin.

Sophie’s main challenge, as predicted, is writing. I saw it last night when we started working on valentines (granted, it’s not easy for anyone to write on a foam heart with a Sharpie, around Yo Gabba Gabba stickers – she did a darn good job) and I see it in all the work that comes home. Miss Y has finally suggested that it’s time to consult the occupational therapist about an electronic writing device.

Something else to make Sophie different. But I know it will help, and we’ve held off on it long enough.

The special ed teacher was sweet. She talked yesterday about how Sophie has so much to say — sentences to put together, thoughts to express — that she simply can’t get down on paper. I wonder, frankly, if she ever will. (A hard thing to admit, given my profession — heck, and my hobby. I blab constantly! I want Sophie to be able to as well, and not just on the phone — her current obsession, sorry if you’ve been on the other end of that.)

One of the OTs explained a while back that it’s like Sophie is wearing mittens — she just doesn’t have the same feeling in her fingers that typical kids have. Combine that with low muscle tone and other challenges and you have some pretty hard-to-read writing.

Drawing is tough, too, though she loves to do it. (And I do love the drawing she did of herself and Ms. X that I embroidered.) The other day I arrived to volunteer in Sophie’s classroom, and out of the corner of my eye I noticed that the bulletin board had been updated.

I always approach a new bulletin board with a little sadness. How will Sophie’s offering look next to the other kids’ creations? This particular display is (coincidentally, given the whole writing discussion) of mittens — cute, they are punched with holes and hung on string, and as I approached, I made enough breeze that Sophie’s literally flipped over. I had to flip them back to see.

I was pleasantly surprised. Her mittens are BEAUTIFUL (see above) and most important, she created a beautiful pattern and repeated it on each. Very nice. No, not what the other kids did (see below) but lovely in their own way, just like Sophie.

Things have been pretty mellow lately — nothing really earth-shaking. Maybe (pardon the pun and the too-neat wrapping on this package) — we (sigh — I) need to take the gloves off, make some demands that will push her to the next level.

And maybe I need to increase my expectations. So I’ll be optimistic, for once, and assume that when she gets her new contraption, Sophie will write volumes. I can’t wait to see what she has to say.

“…also, in case you didn’t know, Sophie is a drummer at heart. She was playing the drum set today and you could tell she was playing with everything in her.”

No, I didn’t know. A drum set may be the one thing we don’t have in the house. Oh dear. Where will we put it?