We were both juggling hectic workdays, so the phone conversation was quick. And as it often is with my best-friend-from-second-grade, it was totally over-the-top.

“OK,” Amy said, “so I’m thinking about going to Mood and buying fabric and hiring a seamstress to make Sophie and me matching purple pajamas for our birthday sleepover.”

“Are you insane?!” I replied. At least, that’s what went through my head. Amy lives in New York City, so she has access to things like Mood (the fabric store made famous by Project Runway) and seamstresses, but still. Hand sewn pajamas and a trip across the country to wear them seemed a bit much for a 9th birthday present.

But Amy is perfectly capable of such an act. Actually, this would be nothing for a woman who once threw an East Indian-themed Thanksgiving dinner on the floor of her tiny apartment, and who’s been known to take off for all parts of the world at a moment’s notice. The day she left for college she called and sang, “I’m Leaving on a Jet Plane” with such gusto that to this day — decades later — I can’t hear that song without thinking of her.

I don’t remember the purple pajama conversation — after all, it took place an entire nine months ago, but Amy swears that back in September, the last time she was home for a visit, she’d promised Sophie a sleepover party for her birthday. (She knew she’d be home around Sophie’s birthday — which is next week – for her niece’s college graduation.)

And damned if she wasn’t going to find matching purple pajamas for the two of them.

“Hold on,” I said, pulling up target.com to look for a more reasonable option. Amy got on, too, and it was just like high school — only instead of picking through the underwear rack at Marshall’s, we were scrolling through pajama options from the comfort of our respective desks.

I found some cute Nick and Nora pajamas in Sophie’s size — purple and with cherries. Voila. And there was even a (sort of) matching nightshirt in the adult section.

I sent Amy the links, then held the phone a foot from my ear as she yelled that this simply would not do. “That nightshirt is white! This is a purple pajama sleepover party! We have to match!” 

Sufficiently chastized, I gave up. Only Amy Segal would honor a 9-month-old promise of this sort. Sure enough, last night she showed up on our doorstep with gift-wrapped, matching purple pajamas (“I Heart New York” tee shirts, perfect!) in hand. She’d even found an Olivia the Pig stuffed animal wearing a bathrobe. And matching pink, furry purses for both Sophie and Annabelle.

“FAO Swartz to the rescue!” she announced, grabbing a peach and plopping down at the kitchen table.  

Sophie was enchanted. I might have forgotten their plan, but she remembered every detail. She sat on Amy’s lap and made her tell the story over and over again, of how many months ago, Sophie invited Amy to her purple pajama sleepover birthday party and how Amy said, “Well, Sophie, I’m not sure I can be there on that day, but no matter what, I’ll come to Arizona and the two of us will have a special purple pajama sleepover party together.”

And then Amy (again) took her finger and traced the path she’d drawn on Sophie’s birthday card, of a plane flying allllll the way across the country from New York City to Phoenix.

The two of them took over the living room. Sophie thought it would be a good idea if they shared one couch, but Amy (and I) drew the line at that, so after a quick cuddle Sophie stretched out nearby and slept all the way til 6 before climbing back in with Amy, which is how I found them this morning.

There was no cake or ice cream or candles, no pinata or games (except a few rounds of Go Fish) and the celebration ended abruptly when it was time for school.

But I have a feeling it was the best birthday party Sophie’s ever had.

She’s definitely one of the godmothers of the scene.

And so it was fitting, I suppose, that I felt compelled to buy my mom (a longtime fan) a piece of Jenny’s work for Mother’s Day this year. I emailed to make an appointment for a studio visit, having no idea Jenny was putting all her work up for sale — way too cheap — to raise money to drive cross country to get her daughter at Cornell, then down to Florida to be with her own mom.

Fitting, huh? All these maternal connections.

I dragged my mom down to Jenny’s gallery, pretending it was a “work appointment,” and watched her greedily gather up pieces to buy herself (damn, that was not the plan). When I admired a piece, she asked if I wanted it for Mother’s Day. Oh no, I told her, don’t be silly. This isn’t a buying visit — I’m here for work. I hustled her out of there; luckily she left behind a painting of a polka-dotted, sad-eyed bird she liked (I hope) and that will be her present. And I might have bought my own favorite (a nude against stripes) as a Mother’s Day gift to myself. (Hey, it’s important to support the arts, right?)

I returned the next day to pick up my purchases, stayed to chat with Jenny, and on the way out, noticed another piece. On the side of the canvas, she’d collaged the line: so close that your hand on my chest is my hand

I had to stop to catch my breath.

“That’s just what my daughter does,” I told Jenny. When Sophie’s falling asleep, she pulls my hand onto her chest, across the bump left where her bones were sawed apart — twice — so doctors could fix her heart.

“Pablo Neruda,” Jenny said, smiling. And later, she sent me a copy of the poem, called “XVII (I do not love you…)”

This poem is specific — it’s about dark, hidden love. Not the love of mother and child — not my kind of maternal love, anyway. But it widens in the last two stanzas, which I think are just right for Mother’s Day.

I love you without knowing how, or when, or from where.
I love you straightforwardly, without complexities or pride;
so I love you because I know no other way

than this: where I does not exist, nor you,
so close that your hand on my chest is my hand,
so close that your eyes close as I fall asleep.

Thank you for that, Jenny, and for making Phoenix a more beautiful place to live. Happy Mother’s Day. And safe travels. Hope to see you again soon.

“Hey Mom, look!”

I glanced up from the computer the other morning to notice Sophie standing at the kitchen counter, all the way up on her tippy toes. I mean all the way. In her sparkly purple Toms.

This could explain why those shoes are so trashed — the ends are basically gone. I’m hoping Annabelle can save them with duct tape. (If she can’t, no one can.)

“Sophie, get off your toes!” I barked. “That’s dangerous! You could really hurt yourself!”

“I’m holding on,” she protested, grabbing the formica.

That’s what Annabelle says when I yell when she stands on her toes. At least she’s wearing actual pointe shoes — given to her last year on her 10th birthday by my over-eager mother (who, as Annabelle’s dance teacher, herself prohibits her students from taking pointe class til they are at least 11). The pointe shoes sat in the closet for months, but as 11 gets closer (July) for Annabelle, and she watches other girls on pointe in ballet class, she’s getting excited. So she’s taken to wearing the pointe shoes around the house, encased in socks, standing for a moment or two at a time at the counter. Although even that is officially prohibited til she is 11.

Sophie didn’t get that memo.

“Look at me!” she said to Ray.

“Wow, Sophie! That’s awe-”

I shot him a look across the kitchen.

“That’s, er, um, no. Sophie, don’t do that,” Ray said.

“It’s not safe,” I said.

“Yeah,” Ray said. “You can’t do that til you’re at least-”

“HONEY!” I barked (again), shooting more daggers.

“Oh,” he said, suddenly understanding — and looking really sad.

We both quickly changed the subject. But I couldn’t stop thinking of all the things Annabelle will get to do in her lifetime that Sophie will never be ready for.

Later at work that morning, it was still bugging me, and suddenly I wondered that maybe I was wrong (and had I even — this is embarrassing — written a blog post on this very topic years ago?!). I started Googling. Within seconds, I was watching a young girl with Down syndrome dance a solo on pointe.

I stand corrected.

There were a lot of comments on the year-old YouTube video, and I quickly realized that not everyone was a fan of the girl’s technique, which I thought was pretty good (I certainly couldn’t do that) and some questions about safety.

I chose not to read the comments or worry about the debate. Til Sophie’s at least 11. And the rest of the day, I felt like dancing.

The athletes emerged from the staging area onto the dusty track, ready to begin their heat in the 100 m run this past Saturday — one of dozens of heats as hundreds (thousands?) competed in the Special Olympics state track meet. Sophie was the smallest.

Waiting to race, she was tiny next to her competitors, all of them several years (and inches) ahead of her, each looking official in their team’s tee shirt, with a big number pinned to the chest. (Sophie’s oversized tee reached so far down past her shorts I had to double-check to be sure she was actually wearing shorts.) Volunteers hovered around the runners, making sure each was ready, and just before the race was to begin, a woman dashed to the fence where I stood watching.

“Is she supposed to be wearing her shoes on the wrong feet?” she asked, pointing to Sophie.

OH FUCK, I thought.

“Oh no!” I yelled — unable to get to her, stuck on the other side of the fence. No problem. Like a pit team around a race car with a flat tire, suddenly Sophie was surrounded, the shoes removed and replaced, lightning fast. The runners took their marks.

I’m sure those volunteers were thinking what you’re thinking. What kind of lameass mother sends a kid to Special Olympics with her shoes on the wrong feet? They might also have been asking why Sophie was an hour late.

Good questions. And I realize that here I appear quite guilty. I am notoriously late to everything. I can arrive 15 minutes early to an event and still manage to walk in an hour late. I’ll be late to my own funeral.

But this time, it was not me. I swear it wasn’t. In fact, I’d been planning this day for a week — I knew exactly what time I’d drive Annabelle to ballet (9:15), what time Sophie’s friend would be dropped off to ride with us (10:45), and what time we’d leave the house (11:25) to ensure we’d get to the stadium long before the suggested arrival time (11:45) to make the time the girls were to report to the staging area (12:30). I’d triple-checked with the coaches in the preceeding days to be sure nothing had changed.

You might think I’m silly, but to me, this kind of thing is sacred. You do not fuck with the Special Olympics. Schedules are color-coded, you have to register, we had practices for months beforehand. It’s the Olympics, after all. It’s a big deal. It’s a big deal to Sophie, too.

And in a world where your kid steals your deodorant to use as hair detangler, writes “I hate you” on the special ed teacher’s white board and gets invited to fewer and fewer birthday parties, yeah, it’s one corner where I have some control. I can get her there on time, she can race, we can go out for frozen yogurt. Simple, right? Not this past Saturday.

My phone rang at 10:40. It was the guy who heads up Special Olympics for the city of Tempe, Josh. Josh is super nice. He’s super laid back. Like, really super laid back. When I tried to sign Sophie up for Special Olympics in the first place, it took me six months (and an email cc’ed to the mayor) to track this guy down. I figured maybe he had some significant health challenges (now that I’ve met him, it’s clear that he’s just laid back).

After two days of state competition (the meet began Thursday night) I was, frankly, digging the laid back thing, following encounters with an uptight security guard, some overly perky volunteers (“Your daughter is just so cute!”) and the Thunderbirds, the uber-polished, modern-day Masons who wear conch belts and golf tans and hand out medals at the awards ceremonies.

Laid back was looking good. Til the phone rang.

“Hey, where are you guys?” Josh asked.

“Where are we?!” I replied, my voice rising with each word (I am not ever laid back) as I suspected what this must mean. “Why? We don’t have to be there for an hour. We have a 12:30 race. You said so. I checked. A bunch of times.”

“Ohhhhhhh.” Pause. “Uh oh.” Deep, audible sigh. “That was my fault.”

“What was your fault, Josh?” I asked. “What?! You mean Sophie missed her race time?”

“Well, yeah, it looks like it.” Another sigh.

I then proceeded to — what’s the technical term? — freak the fuck out.

I’m not saying I was nice, but long story short, I guess I was effective. I told Josh that wasn’t acceptable, that he needed to talk to someone, that I would talk to someone, that someone needed to talk to someone. (Actually, I said even worse. I’m sure you can imagine.) He protested and I persisted, even put Sophie on the phone (remember, I’m not saying this was my finest hour) and finally I said, “Okay, Josh, we are going to hang up and you are going to call me back when you have this fixed.”

I still can’t believe it worked. Ten minutes later, the phone rang.

“If you leave the house right now, Sophie might still make her heat,” he said.

So I skidded into Sophie’s room, where she and her friend were playing, hollering, “Sophie put your running shoes on! Tatum, help her! And have you both gone to the bathroom????!” on my way to stuff water bottles, sunscreen and hats in a bag.

We hustled out the door and, even with my Mr. Magoo driving skills, made it to the stadium in record time. Josh had instructed me to pull up alongside the fence and call for the Tempe coaches, who ran out to grab the girls. I plucked a rubber band from my wrist and handed it to a coach to put Sophie’s hair back, wished the girls luck, and raced off to find a parking space.

I made it inside the stadium just as Sophie was emerging onto the track. Once the shoe incident was settled, she took her spot, looking so serious. She’d told me she was a little nervous. The 100 m run is exciting in that (unlike with the 50 m dash) there’s enough time for some drama, and this was an exciting race. Sophie took the lead immediately, pulling out ahead of her (relatively) giant competitors, ultimately falling back but giving the eventual third place winner a real run for her medal. I’ve never gotten so excited at a sporting event, I was screaming and running along the track, waving my arms.

Ray had made it just in time to see Sophie race, but the rest of our friends couldn’t get there in time. We’d told them 12:30. She finished a little after 11.

I texted and called, warning them they’d missed the race, but people still showed up — Sophie’s best friend Sarah, her beloved kindergarten teacher Ms. X, and our dear friend Kathy, bearing a tiny, pink-frosted cake for the athlete. When Sophie took the stage to take her fourth place ribbon, waving like crazy, we might as well have been in London or Sydney or Barcelona, rather than Mesa, Arizona. She brought down the house.

Afterward, we wandered around the “Olympic Village”; the girls ate snow cones and practiced throwing basketballs. I looked up, and there was Josh.

I was impressed he came over to apologize, and I told him so. “It’s over now,” I said. “I’m just glad the girls got to run. I know it didn’t happen on purpose. I hope it doesn’t happen again to anyone else.”

Josh looked at the ground. He wasn’t done apologizing. “When the girls got here today,” he said, “Sophie ran up to me and said, `Josh, I’m sorry I’m late!””

He looked up, and I could have sworn he had tears in his eyes. “I tried to tell her it wasn’t her fault, but I’m not sure she understood.”

I wasn’t sure what to say, so I just nodded.

I don’t think it’ll happen to anyone again. Not on this guy’s watch.

Hi. Could I please get a hot grande non-fat latte?

Pause.

How are you?

Oh fuck. I pissed off the Starbucks girl. Everyone who’s ever heard the one about the Jack in the Box clerk who spit on the Jumbo Jack knows what a mistake that is. In my defense, it was early in the morning, I was in a rush (no time to wait half an hour for a perfectly crafted espresso drink at the Portlandia-esque coffee shop down the street), and frankly, I can’t believe that girl really cares how I am. As a friend pointed out, she’s probably just as annoyed at having to ask the question as I am at having to answer it.

In any case, I made nice with her, got my (hopefully spit-free) latte and went on my way.

What is it with fake-nice customer service these days? Last week the clerk at Walgreen’s welcomed me heartily when I arrived and yelled after me to “stay healthy” when I left.

All I want is to be left alone. I don’t know about you, but pretty much the only quiet time I get is when I’ve escaped by myself to the drug store or the market. Please don’t talk to me; can’t you see I’m deep in reflective meditation? OHMMMMM. 

The other day I really got frazzled at Safeway. I was there solo on a Saturday afternoon — frankly, I don’t know how I managed, since Ray lately finds it fun to shop as a family (which is why the cupboard is packed with Hormel microwave dinners, Top Ramen and Cheetos) but I did, and I was pulling out a cart and heading to the produce section when I heard it.

HEY EVERYONE, WE JUST GOT A ONE DOLLAR DONATION FOR PEOPLE WITH DISABILITIES! WE’RE DOUBLING THAT TO TWO DOLLARS! WOO HOO!!!!!!!!!!!!!!

You know how when you pay at Safeway, you can usually check a box and give a couple dollars to a charity? Well, turns out, this month is Special Olympics month, and they’ve upped the ante (at my Safeway, at least) and management is matching donations and also, I soon realized, on this day letting anyone who contributed money spin a wheel to win prizes that I think included baked potato chips and bottled water.

That’s nice, I thought as I browsed the apple aisle. After all, Sophie is now in Special Olympics, and just a couple weeks ago I waxed on about how amazing the program is. I’m sure it costs a lot to run; it’s wonderful that people are contributing money and that my neighborhood Safeway — which also employs a few people with developmental disabilities as baggers — is so supportive.

By the time I got to the soda aisle, I’d changed my mind. The store was packed and every 15 seconds or so, the loudspeaker would come on and the manager would shriek about another $1 or $3 donation. Then yell WOO HOO at the top of her lungs.

And then it would start again. Somewhere around the eggs, I was pretty sure I was going to lose it. But I’d already invested 20 minutes in shopping; what was I going to do with a full cart? I couldn’t ditch it (like I’ve done at IKEA, I will admit) — I had perishables. So I kept going. There would be no quiet reflection today; instead I tried to figure out why (aside from the decible level) this was bugging me so much.

These people are just trying to be nice, I told myself. And they are nice! They are nicer than you, they are helping others and they probably don’t even have a family member in Special Olympics, so they really are pure of heart. Just helping their fellow man; no agenda, no conversion after having a kid with Down syndrome. Get over it, Amy. They are just having fun.

And then the loudspeaker came on again, and I changed my mind. There is no way that woo-hoo-ing manager really gets it, I thought.

Or maybe she does. Maybe she totally gets it. And maybe (probably) her woo-hooing is a lot more attractive than my boo-hooing. In any case, I’m not sure I can shop at Safeway much longer.

By the time I got to the check-out aisle, my head was spinning. I emptied my cart and pushed it toward the bagger, who looked at me funny and asked, “Ma’m, did you want to buy this stuff?”

I looked down. The cart was still half full. I apologized profusely, emptied the cart and slid my card to pay. The screen popped up: Did I want to donate for people with developmental disabilities?

“Pssst.” I got the clerk’s attention. “Hey,” I said as quietly as I could over all the noise, “I want to donate some money, but I don’t want anyone announcing it, or yelling WOO HOO or anything like that. Okay?”

She gave me a dirty look.

“See, I have a daughter and she’s in Special Olympics and I know I’m overly sensitive, but this whole woo hooing thing is driving me crazy, it’s just too much.”

Her face changed. “I know how you feel,” she said softly, as she motioned the manager over. “I have a niece.”

The girls were chattering in the back seat one evening this week, when Annabelle’s tone suddenly got dark. I turned down the radio for more effective eavesdropping and when that didn’t work, hollered, “What’s going on back there?”

Turns out, they were discussing Sophie’s new friend at school (we’ll call her Sally) and something Sally’s sister said to Sally, which Sally then repeated to Sophie and Sophie had just told Annabelle.

“Sally’s sister told Sally that Sophie is stupid,” Annabelle reported, sounding like she was going to punch someone.

She turned back to Sophie. “I don’t like Sally. She’s not a good friend to you. Why would she tell you that?”

“Yeah,” I chimed in, unable to help myself. “Why?”

“I don’t know,” Sophie said in a small voice.

“What did you say when she said that?” I asked.

“I said, `That’s not nice.’”

“And what did Sally say?”

“She said, `Good.’”

Obviously something got lost in translation.

“How did this make you feel, Sophie?” I continued.

“Upset.”

“You know it’s not true, you know you’re not, right?!” I asked.

“I know,” she said, this time in an extra-small voice.

“I don’t like Sally!” Annabelle said again.

“I don’t like her sister,” I said.

From what I could gather, Sally’s sister is in the fifth grade at Sophie’s school — two years older than Sophie, Annabelle’s grade. (Although Annabelle now goes to a different school.)

Later, Sophie asked for a playdate with Sally, and also reported that we’re all invited to go camping with Sally’s family in the desert next Easter.  I don’t think either will be happening. This is the family, by the way, that I stressed out over a few weeks ago when Sally was scheduled to come for a playdate and I wasn’t sure her mom knew Sophie had Down syndrome. (Then the mom declined to cross the grass to meet me — or Sophie.)

Perhaps I should have been more concerned about the sister than the mother.

I definitely need to get over it. I better grow some thicker skin — and quick. I told Ray about the whole thing over lunch a couple days later, and we agreed that the odd part wasn’t that it happened, but that it hasn’t happened already. This was the first time.

I turned the car radio back up — loud — to distract the girls (Annabelle as much as Sophie, she was still so angry), and thought about what more I could say.

I considered teaching Sophie, “Sticks and stones may break my bones but words can never harm me,” but I’m not sure I believe that.

So instead I told her I love her.

Take it away, Noan:

What we resist, persist, right? I suggest the next time that apparition appears you sit down and let her stay awhile. Pour her a drink. (Have one yourself.) And when she suggests that Sophie has the cognitive abilities of a three year old, don’t argue. Just nod your head and say – Mmm, maybe.

Noan

I thought by now it would be out of my head, but more than a year later, I’m still sitting at that conference table at that school, hearing that school psychologist say it. I’m asking her pointed, doubting questions about the battery of tests she’s just given Sophie, who is almost 8, when she cuts me off, obviously both frustrated and proud, and announces to a packed room: “According to my results, Sophie has the cognitive abilities of a three-year-old.”

No one says a word. Not Sophie’s lawyer or the district’s lawyer; not the classroom teacher or the special education teacher or any of the therapists or the principal or the district’s special education expert. My eyes well up, my throat closes. I don’t have anything to say, either.

Since that day, it hasn’t been mentioned. I tried once or twice with the teacher, who acted like she didn’t hear me. She, like everyone else at the school, is afraid of getting in trouble. I get the politics. But I don’t have to like them. And so I told Sophie’s lawyer to ban the school psychologist from any future meetings about Sophie. That comment doesn’t matter one bit to Sophie’s future, her lawyer assured me. It was just a dumb thing that woman said. Forget about her.

But I can’t ban her from my head. She’s set up residence there, poking at me all the time, raising doubts. Making fun.

“Aw, looks like Sophie still loves Elmo!” the school psychologist comments, hovering in the playroom near the toy baskets.

“I see she’s watching Blues Clues again,” she says, passing by the TV.

“Good luck finding Sophie an Olivia the Pig shirt that’ll fit,” she taunts, as I search on the Internet for a tee shirt or pajamas. “They only make them for toddlers.”

“Look at that!” she said this morning, as we headed out for school. “Sophie’s wearing an old backpack today — from pre-school!”

“Oh no,” she stage whispers, a ghostly apparition in the chair next to mine at the parent/teacher conference. “That’s not an E for excellence on that report card, that’s just a polite way of saying F. What do you expect, Mom? You really think a kid with the cognitive abilities of a 3-year-old can pass even a modified third grade spelling test?”

And then she cackles.

She wasn’t at Sophie’s IEP meeting last week, not in person anyway. But she was there — her test results tucked neatly into Sophie’s permanent record, she hung over the room and watched the discussion. The meeting went pretty smoothly. No one challenged our request to continue with the classroom aide, my biggest worry. Everyone agreed Sophie was doing really well socially and (within reason) academically and we tweaked some of her goals regarding computer use (she needs to get better at it) and writing (she is going to work next year on crafting stories with a “beginning, middle and end”).

Then came the page of the long document devoted to the AIMS test. There was a space left for someone to check whether Sophie will take the regular AIMS  (our standardized test here in Arizona) or an “alternative” version.

To clarify, I am not in support of the AIMS test for any kid, not after watching the constant drills that have replaced real teaching in her school. And yeah, I feel like it’s even less relevant for Sophie. But I’d done some homework and learned that the “alternative” test is for kids with severe cognitive challenges. I wondered if, to the school, that’s Sophie.

So I sat on the edge of my seat as the special education teacher pulled the AIMS page out of the pile, explaining she hadn’t checked a box because she wanted to talk to me about it.

“Sophie doesn’t qualify to take the alternative test,” she began, ready to defend the school’s decision to give Sophie the harder test (with accommodations).

I interrupted. “I’m fine with her taking the regular test!” I said. “To be honest, I was worried you’d want her to take the other.”

The principal looked surprised. “Why would you think that?” someone asked.

“Because,” I said, sitting up as straight as I could, trying to keep my voice steady, “last year we sat at this table and your school psychologist said Sophie has the cognitive abilities of a three-year-old!”

This time I did hear someone suck wind and chuckle from the other end of the table. I think it was Sophie’s adaptive PE teacher, the one who tells me Sophie will someday live on her own and who this year asked Sophie for her suggestions about what her IEP goals should be (the other therapists looked amused when she mentioned it), but I didn’t turn to look.

At the same time, the head of the district’s special education department (a BMOC, apparently, he runs the whole show) snapped up and he asked, “Who said that?” Sophie’s lawyer patted me on the shoulder and announced to the room in a soothing voice, “That’s all water under the bridge.”

Not to me. “I’ll be happy to tell you after the meeting!” I said to the guy before shutting my trap. He never did ask. I’ve thought about writing him a note, but I’m not sure it’s such a good idea. This man could make Sophie’s school life really tough at a time it’s going relatively well.

And really, it doesn’t matter. The (brain) damage is done.

Today is Sophie’s IEP.

Not my favorite day of the year, though (knock wood) I don’t anticipate any big bumps this time. Sophie’s lawyer (she has one after last year’s IEP) reviewed the draft copy and assures me the accomodations we want — most notably, the classroom aide — are in place.

Which is good, because I look at documents like draft IEPs and all the letters and numbers swirl together, much the way the doctors all sound like adults on Peanuts cartoons when they start talking about serious stuff and my kid.

All I see when I look at a draft IEP (and I’ve looked at several over the years) are lots of little boxes to check, tasks that must be completed to satisfy the feds and other government entities that dole out funding.

For the most part (and yes, there are notable exceptions) the IEP is bullshit, or at least irrelevant. (For the lucky uninitiated, that’s Individual Education Program, the legal document that dictates the next year of a special needs kid’s school life, decided upon by a committee including teachers, principal, therapists, parents and in our case, lawyers.) Like standardized testing, I don’t see it having much to do with Sophie’s day-to-day school experience, or the stuff that’s really important.

You can have a super IEP with everything in it, but if it’s not implemented correctly (and really, how do you know, unless you put a camera on your kid) it’s worthless. Ditto if you have a crappy classroom teacher or an inexperienced special education instructor or a terrible classroom aide.

We’ve been so lucky, so far. Each of Sophie’s teachers has been wonderful. The classroom aide — the one I was told for years in theory would impede the goal of the “least restrictive setting” by coddling Sophie and holding her back — has exceeded my expectations. I love this woman, who proves that the right aide really can provide the least restrictive setting.

That doesn’t mean there haven’t been problems this past school year. Problems, sadly, that won’t be much affected by what’s in Sophie’s IEP. Handwriting is a struggle. It doesn’t seem to matter what we write in that IEP: bottom line, Sophie needs way more occupational therapy than anyone can fund, and no directive is going to convince my kid to use the computer when she doesn’t want to and all her friends are writing by hand.

Ditto for spelling, where I feel like Goldilocks:

Those spelling words  are too hard!

These spelling words are too easy!

Where are the spelling words that are just right? And where’s the attitude adjustment Sophie needs to spend several hours a week memorizing them?

You won’t find any of that in an IEP.

And yet, later today we’ll all squeeze into a box of a conference room to figure out what sort of boxes need to be checked for Sophie. At the end, I’ll get a lot of pressure to review the final documents and sign them quickly to make the school district’s deadline. (I know more than one special education teacher who’s quit in frustation over the paperwork this process entails.) I’ll stress out over the amount of time they are pulling Sophie from the regular classroom for special ed (at what point is this no longer mainstreaming?) and in the end I’ll wind up signing the paperwork because I feel guilty — for waiting too long, for being unsure, for sucking up so many resources with my anteater of a kid. For not demanding more resources.

It’s a lovely process, a reminder — despite the hopeful term Individualized — of the box Sophie’s in. It makes me think of the photo booth strip taped to the right side of my computer screen at work. Four panels of Sophie being silly, including one where she looks like she truly is popping out of a box.

Maybe I’ll bring that strip with me today, put it on the conference table along with all the paperwork and each side’s tape recorder — to remind us (me included) that we’re all supposed to be on the same side.