Sophie’s lawyer asked me to write down some concerns in anticipation of her annual IEP meeting next week.

(IEP stands for Individualized Education Plan — the living legal document that guides/dictates the educational life of a kid with a disability.)

I smirked. Perfect timing for an airing of grievances.

I started this blog to catalog Sophie’s kindergarten year — and kept going. This past August she started high school, and I’ve been uncharacteristically quiet. Yes, it’s natural to pull back on the details as your child gets older, or stop writing altogether. There are a lot of parenting blogs gathering dust out there in cyberspace. But that’s not what this is about.

I haven’t known what to say. At first I didn’t know what to say because as high school approached, I didn’t have a care in the world. This terrified me because the last time I feel that calm was right before Sophie was born and diagnosed with Down syndrome and a heart defect.

We’d spent so many months years planning, stressing, applying, questioning — there was nothing left to do but shop for school supplies.

And then, two weeks before school started, Sophie’s lawyer called to say she was closing her practice. I hung up the phone and sobbed. This woman had been Sophie’s only legal representative — we’d waited till third grade to hire an advocate to fight for a classroom aide and to stop the emphasis on test scores that said so little about my kid. “You’ve got this,” the lawyer promised. “You don’t really need anyone.”

It’s true that at that point, everything was in place. School started okay. Sophie was on Cloud Nine, fueled by the fact that she had left the middle school dress code behind. As we pulled into the school parking lot the first day, she cranked a Taylor Swift song on her phone:

Just like that, one day she was gone.

(This was not her fault — and her leaving had nothing to do with Sophie.)

Without the lawyer, without the aide, I felt like I’d been instantly transported to a tightrope miles above the city, Sophie in my arms. Sophie’s small for her age, but by no means can I hold her these days. Definitely not without solid ground beneath me.

The free fall hasn’t been fun.

I had no power over who Sophie’s next aide would be. But I did get to pick her next attorney. I met with a friend who’s also a special ed lawyer. “I can’t help you,” she said. “I’ve never known a kid with Down syndrome who’s been mainstreamed in the classroom as long as Sophie has.”

Today we have a super lawyer; hopefully she will still be our super lawyer after she reads my list of grievances.

And Sophie has a new aide. The woman seems sharp and kind. Sophie likes her. They do not have the rapport that only comes after six years together all day, pretty-much-every-day. But they’re getting there.

The damage of three weeks of substitute aides and what I’ll euphemistically refer to as “communication challenges” has not been undone. High school is hard, really hard. I think it can work. I hope it can work. It can work. I need to make it work for Sophie. She loves the school; I just have to make sure it loves her.

Easy, right? If you’re looking for me, I’ll be the one holding my breath till after that IEP meeting.

Sometimes you’re moving along through life, feeling like you have certain things down, know others to be true, and something happens that just completely rocks your world and makes you question everything you’ve done as a parent.

Or something like that.

A few days ago, a Facebook friend and fellow parent of a kid with Down syndrome posted an article about the relative merits of bringing food to IEP meetings. I stared at the computer, mouth literally hanging open.

Before I go any farther, let it be said that I am 100 percent in favor of gifts, including food, for everyone at my kids’ school from the crossing guard to the principal. Back to school gifts, teacher appreciation gifts, Christmas cookies, valentines — I’ve even been known to send round challahs during the Jewish holidays.  I like to connect on a personal level with the people who spend so much time and effort on my kid and ours is not a school where a lot of gift giving goes on, for whatever reason. As far as I’m concerned, teachers should be showered daily.

The gift giving argument is one for another day, though. I’m talking more specifically today about food at IEP meetings.

The IEP meeting is federally mandated and designed to create a document that gets a lot of scrutiny — a roadmap, in essence, for your kid with special needs. It’s arguably one of the most important sessions of the year. I’ve been through many, with a kid in seventh grade, and I can say that I’ve had my share of contentious IEP meetings, as well as uneventful and even a few downright pleasant sessions. But never with food.

To me, that’s like eating in church, one of the few times of the year when I have no appetite.

It never occurred to me — the one who made it my business to know the kindergarten teacher’s standing order at Starbucks, the principal’s dietary restrictions — to bring food to an IEP meeting.

Instead, when Sophie was in third grade, I started to bring a lawyer.

It would have been a lot cheaper to bring a bagel platter.

Do you bring food to IEP meetings? I’ve got one next week.

Saturday was the state Special Olympics cheerleading competition. Sophie’s team bombed. They finished third out of three, winning bronze medals. I found Sophie’s crumbled on the not very clean porch windowsill the next day. No one had even bothered to bring it into the house.

A rather sad end to the season, in contrast with last year, when Team Tempe came from behind to tie for the gold.

Here’s the thing, though. Sophie’s team bombed — but they also completely and totally kicked ass. They had great music, great choreography, they knew their moves. The crowd loved them. Sophie had a blast onstage, smiling, shaking her pom poms and her hips, staying on the beat and, of course, doing the splits (three times!) at the end of the routine. (When Ray gets a video made, I’ll post it.)

The competition was tough. In order to dance and cheer (as opposed to just cheer), a team has to enter the “advanced” category. And Tempe was pitted this year against two very good teams. So yes, technically they bombed and kicked butt at the same time. And honestly, I don’t think the team would have performed as well if they hadn’t been pushed so hard to compete. I love Sophie’s coach for making the decision to enter them in the harder spot.

It was one of those rare and beautiful moments when your kid is pushed to her limits under all the right circumstances, in a place where it’s safe to fail. In a place where it’s understood that even though every participant has “special needs,” someone will fail. A soft landing, a medal, but still, last place.

I sat in the audience as the bronze medal was announced, and thought about science.

Last week I learned something I am kicking myself over for not figuring out way sooner. What I’ve been able to piece together so far is that Sophie’s gotten little to no science and social studies instruction all year — and what she has received has not been modified, meaning it’s way too hard for her. Because of a scheduling snafu, instead of being pulled out of regular math and language arts for “resource” help, that’s been happening during science and social studies, the rare times Sophie is supposed to be learning alongside her typical peers.

Long story short: the work in science and social studies is too hard, and Sophie’s not in class (much if at all) to learn it.

I’m sure I’ll write more about this as I learn more (I have meetings pending with the special education teacher and principal) but one thing I’ve learned disturbs me most of all. Sophie was given a C in social studies and one in science, and word on the street is that this is because someone at the school has been trained to “never give a special needs student a failing grade.”

That could be because it’s expensive and inconvenient to educate a special needs kid. The idea generally is to resist holding such kids back a grade — just move them along, let them socialize with their peers. It could also be because it’s easier to give a special needs kid a C than disappoint either her or her parents. Ds and Fs raise more questions than Cs.

I am not a fan of either reason. I sat and stewed during the rest of that medal ceremony and it wasn’t because Team Tempe lost. It was because when you throw that up against what has obviously happened at school — and a school where everyone loves Sophie; where a lawyer fine-tooth-combs her IEP and attends all the meetings; where I like to think I’m on top of every little thing — almost an entire year can go by where no one’s offering your kid (and others, this seems to apply to at least two if not a whole gaggle of fifth graders and perhaps beyond) two of the main subjects taught at the school.

I blame myself. I should have figured it out. But I didn’t. No one did, until last week. Now there will be lots of meetings, carefully worded apologies (since all of this may or may not be illegal). They’ve already sent home science and social studies vocabulary words for Sophie to study for an upcoming test. For the most part, I’ve learned that people aren’t cruel; they are just not well trained for their jobs, and when Sophie’s part of the job, there’s a greater chance of mishap since it’s so relatively rare for a kid with Down syndrome to come along and require so many adjustments. And Sophie does require a lot. I get that. I feel guilty about it. But Sophie deserves an equal education.

And if the classwork is modified and taught to Sophie and she studies and takes a test and fails — she deserves an F.

It’s such a detailed process, designed to address every possible angle of your kid and her needs, but really what I find is that it lulls you (or me, anyway) into a false sense of security.

Consider the following.

The meeting was Friday. Monday (ok, it might have been Tuesday) evening we were winding down, discussing the day’s highlights, and Sophie informed me that she had eaten some M&Ms.

“Yum yum!” she announced, pantomiming the act of the gobble. I was curious.

“Where’d you get those?”

She mentioned the name of the special ed teacher at school. Upon further discussion, it became clear that Sophie had behaved well during a session, and was rewarded with what I’m guessing was one or two M&Ms.

Really, no big deal. Except that we spent a long time in that IEP meeting just days before talking about various reward systems — that the Elmo chart (which became a Christmas chart, then a Foofa from Yo Gabba Gabba chart) had fallen by the wayside, that sometimes it worked to hold onto Sophie’s favorite self-soothing paintbrush during a session and give it to her at the end in honor of a job well done.

No one mentioned M&Ms. I’m sure that’s because there are all sorts of food rules at school these days. I’m all in favor of that. If I’m going to let my kid have junk food, I want to be in control of it. That said, I really don’t care about occasional treats. (This is a whole other discussion for another day, but I think it’s a bad idea to never let your kid have treats; it only makes her obsessed with getting them. I should know.)

But not as a reward for good behavior. Not from the special ed teacher, who of all people has been trained (I thought) to come up with better methods to ensure good behavior.

And not, for crying out loud, for a kid with Down syndrome. Sophie’s pretty lithe at the moment, but I’d like to keep it that way, and sadly, she’s genetically programmed for plumpness.

Most of all, I was annoyed at the timing — that Sophie mentioned the M&M thing just days after the IEP meeting. A good reminder, I suppose, that an IEP is pretty much worth the paper it’s printed on.

I do love Sophie’s teacher, Ms. Y; she  has quite a way with words. When I mentioned the M&M thing in an email, she responded that “non-culinary” reward options would immediately be explored.

In fact, the special ed teacher reported yesterday, that will be written into the IEP.

Great.

It rained yesterday. That’s headline news in these parts. We’re always unprepared. Several of the caramel-dipped, chocolate covered pretzels I’d brought to school as holiday gifts fell in a puddle (don’t worry, they were wrapped, you can get them that way — warning, product shot! — at Granny’s Chocolates in Gilbert; the casualty was the cute labels I’d ordered from etsy.com) and I was wrestling with the dry ones, wet hair dripping in my eyes, trying to figure out which teacher’s box was where in the school office when the principal walked by.

She always catches me at my most inauspicious. Usually at the copy machine, which befuddles me every time.

“Hi!!!!” she chirped, and launched right in: “I think Sophie’s doing SO well! Don’t YOU? She’s SO CUTE!”

I stopped, mid-pretzel placement, and looked at her. This is one of those moments where you wish you could hit the pause button like on the “Upside Down Show” on Noggin, and take a moment to figure out what to say.

I could have said, “Well, actually, I’m terrified Sophie has no friends and never will and I’m just playing a big game of pretend” or “I’m worried she’s taking up all of Ms. X’s time” or “She’d be doing a lot freaking better if she got even a dime’s worth of extra assistance, and are you ever going to do anything about that 92 to 1 kindergartener to adult ration on the playground at lunch?”

Instead I smiled a goofy smile and agreed with her, immediately wondering if somehow agreeing that Sophie was doing well would someday be used against me in a court of the law of special ed.

“She’s just SO CUTE!” the principal said – again. “And I hear she’s not really running away anymore, that’s great!”

Actually, Sophie ran out of the classroom last week. But I didn’t mention that. I just smiled some more.

“Annabelle’s awfully smart!” the principal continued, adding that she got a peek at her recent test scores.

I smiled some more and nodded some more.

I wish a caramel-dipped, chocolate covered pretzel could drop from the heavens with a note attached (and hey, how about one with no calories, that would be a feat) telling me what to do with this principal. Because like it or not, I’m stuck with her if I want to keep Sophie at this school — and I do, very much, for now at least.

Even as cynical and scared as I am, I have to admit she’s making real progress.

Today my mom and I celebrated Hanukkah with Ms. X’s kindergarteners. After several years of well-meaning attempts, we’ve finally perfected our act — just the right amount of information (me) balanced with a lot of goofy story telling and dancing (her).

As you might recall, I’ve been hesitant to spend much time in the classroom, because Sophie tends to stop everything to focus on my presence. But today, we had a little Hanukkah miracle — or, at least, a small turning point.

Sophie waved when I arrived, and made sure Ms. X knew I was there, but she stayed in her spot on the carpet and did everything she was told for the entire visit. She was happy but calm, and seemed more grown up than I’ve ever seen her, despite the fact she’s still literally half the height of most of her classmates.

She raised her hand along with the others when I asked questions about Hanukkah (I was glad she’d taken off the Santa hat she’d insisted on wearing to school) and mentioned a dreidel when I asked what the kids knew about the holiday, which was more than any of the others knew. (Of course, she’s the only Jew, but still.) When we talked about Hanukkah foods cooked in oil, she did mention bacon as an option, but I can’t blame her — we eat pig. And bacon’s greasy, so she was close, right?

When it came time to pretend to light the candles, she stood proudly before the menorah, hands before her eyes, just like our friend Anna.

She barely looked up when I came by to say goodbye, happily doing her work at her desk. (With some assistance with the scissors.) She smiled a big smile, kissed me, and went back to her cutting.

I would dip myself in a vat of hot caramel and roll in chocolate if it would ensure more mornings like this morning. I’m definitely signing up for a regular volunteer slot in the classroom, after the holiday break.

I had no clue how to apply that. And by the end of the meeting with the principal, my cluelessness was evident. Also my bitchiness.

“Were you raised in New York?” the private psychologist asked me, as we walked outside. 

No, I replied. Why do people always ask me that? (That’s a rhetorical question.)

Maybe it was the full moon. Ms. X said she could feel it in her kids — she called it before she’d even looked at the calendar.

Or maybe I was just doomed. I’m never going to get what I want for Sophie. Clearly bringing the psychologist didn’t do it. Probably the only thing that would work is a lawyer.

The principal DID apologize for abandoning two meetings in a row. She DID acknowledge that I’m not the first parent to complain about playground safety, and teacher/student ratios. But she was quick to tell me her numbers (she says it’s 1 to 88; i’d heard 1 to 92) are perfectly legal.

“I know,” I said. “I researched it. They’re legal because there is no law.”

Whoops. I shouldn’t have said that. She frostily answered that she’s well within the district policy. (So now I need to research THAT.)

She told me that if we write into Sophie’s IEP that someone must walk my child from the cafeteria to the playground each day at lunch, that counts as a personal aide. “And then it wouldn’t be the least restrictive setting for Sophie,” she said, “and you’d need to research other programs in the district.”

(I’m beginning to hate the term “least restrictive setting” as much as I hate the term “retard”.)

I think this is the point in the conversation where I actually used the word bullshit. I saw her literally start to quiver, then stop. I did feel badly, but kept going.

“Look, I KNOW what a personal aide is. You mean to tell me that someone to spend 5 minutes ensuring my kid’s safety is the same as a full time aide in the classroom?”

She claimed that’s how the district sees it. Her suggestion (mandate): Find some sort of solution that doesn’t have to be written into a binding legal document.

Hmmm. Why does that make me nervous?

Everything about this principal makes me nervous. I think about that old neumonic (is that how you spell neumonic? I doubt it) device — “the principal is your pal”. I wish. I’d like to think so. As always, she said all the right things, that she loves Sophie, that she thinks Sophie is in the right place. I feel myself pulled toward her, wanting to like her. But she’s like a boss, and you always have to be careful about getting chummy with the boss.

“Yeah,” I thought, “as long as I don’t ask you for anything.” (At least that one didn’t come out of my mouth.)

And really, the upshot of yesterday’s meeting was that sthe principal took the opportunity to belittle the poor speech therapist who had had the guts to complain to her about the 1 to 92 playground thing. (The speech therapist does duty once a week, so she knows firsthand what it’s like.) Oh, and she was obviously mad at another team member who’d shared information about another kid’s IEP. The principal made it clear she was holding that woman back after the meeting, to let her have it.

I didn’t let anyone have it. Not really. Because I wasn’t sure what to say. If I was writing a story about someone else in this situation, I’d know just what they should say and do, and I know where to go to find the information to make the case. But as such, I’m lost.

Sophie’s IEP team met yesterday. Crammed around a small table in a portable classroom were:

Me. The kindergarten teacher, physical therapist, speech therapist, adaptive PE teacher, school psychologist and classroom volunteer. The psychologist who evaluated Sophie this summer made a special trip over. And the principal was there.

We began by reviewing Sophie’s progress in therapy. I brought reports from her outside physical therapist and occupational therapist, and we went over her daily schedule and achievements in class. Everything’s going well, I was assured.

Not long after the meeting began, the principal stepped outside. I know she’s busy; her job is obviously a demanding one and she had been checking her phone while we’d been sitting there (to be honest, I itched to check my own, I left work far earlier than I should have, but I put the thing on silent and left it in my purse).

The principal never said she needed to leave early. I wish she had, because I wouldn’t have saved my most significant concerns for the end. But I was nervous. My main goal with this principal, with this school, has been to avoid rocking the boat. I was worried about sharing my concern, which is about Sophie’s safety.

I first shared this concern at the original IEP meeting we had in the spring, at Sophie’s pre-school. The principal was at that meeting, too, but again, slipped out early without saying anything. And so when we got to the part of the meeting where I announced that I believed Sophie needed a parttime aide for transitions (playground, lunch, that sort of thing — any time she could stray from the group), if only for the first two weeks of school — a safety net, so she could get settled in, considering the front gate on the school is left open all day — the pre-school principal said, “Oh, no, I can’t make that decision. That’s the other principal’s decision, and she isn’t here.”

Oh. Actually, as I gently pointed out, I believe the law states that it’s the IEP team’s decision, not the principal’s. But again, I didn’t want to make trouble, so I signed the IEP anyhow – but only after everyone agreed that the “team” would meet again one month into the school year, to review Sophie’s progress and challenges and make any changes needed to the IEP, a binding legal document.

Yesterday was that meeting. Turns out, my concerns are sadly founded. Sophie has already escaped from recess once, and that was morning recess, where there are several adults present.

Lunch time is the real concern. At lunch time at Sophie’s school, there are 92 kindergarteners on the playground, with one adult to watch them. There is no one to help Sophie make the transition from the lunch room to the playground, and just one person to watch her and 91 other kids.

We scheduled yet another meeting with the principal for next week, to review these concerns. This morning she said she left the IEP meeting early, because she had heard it was just a review session (although I’d made clear it wasn’t, weeks ago) and anyhow, she had another meeting to attend that day.

I hope I’ve calmed down by our next meeting, because ever since I heard why she left Sophie’s IEP, I’ve been, well, let’s just call it unhappy.

The principal left Sophie’s IEP so she could run a meeting about a golf tournament.

That pushed me right off the tight rope. Which might be the best thing that could have happened.

Sophie’s IEP team is meeting, to review her first month of kindergarten.

When we were putting the finishing touches on Sophie’s IEP (Individualized Education Program, the document that prescribes her school situation, from what therapies she gets to where she pees) I insisted we reassemble the team (everyone from principal to teacher to therapists to parents) a month into kindergarten, to see how Sophie was doing.

I could feel some internal eye rolling; IEP’s are a huge pain in the butt, if only for how hard it is to get all those people in the room at the same time. But at the time I signed the IEP, I had real doubts — mainly about Sophie’s safety at a “big kids” school. Why not get together to see how things are going, and make changes if necessary?

OK. It was agreed. When the speech therapist — a lovely woman who’s new to the school, if not the profession — suggested we meet September 11, I bristled. School started August 4th. That’s NOT a month. It’s five weeks. But I kept my mouth shut. I have learned to do that, in such situations. The ballbuster me (gee, wonder where Sophie gets THAT?) has learned to make way for the sweet-as-pie-mother-of-a-special-needs-kid me. Well, sometimes the ballbuster gets in the way. We’ll see tomorrow. But for now, I’ve been fairly sweet, if I do say so myself.

I didn’t say anything about the date, but when the speech therapist then emailed to confirm this would just be a “get to know each other” session, I freaked a little. Um, no, I replied. This is an IEP meeting. There might be changes necessary.

I hear the speech therapist is freaked, too. Apparently she IS rather new, and she’s used to dealing with kids with speech delays, rather than global disabilities. And here it gets a little confusing: Sophie has the “mild retardation” label but her IQ is so high (and yes, I know, IQ tests are bullshit, but hey, better high than low, I always say, to paraphrase Shrek) she doesn’t qualify for services from the special education teacher, who would typically lead the team.

In any case, I am approaching this meeting with trepidation. I already know that I won’t get what I want, which is a parttime aide to keep Sophie safe on the playground and at lunch. And I know (after a conversation with the school psychologist yesterday) that I better brace myself for the advice (yet again) that really, Sophie might be better off in a “pull out” program, the one where the other “special” kids go.

But because of her aforementioned IQ, she doesn’t qualify for that “special” program. She belongs where she is. But she needs to be safe. Between this and Sarah Palin, I really do wonder — AM I ON AN EPISODE OF THE TWILIGHT ZONE???

Part of my coping mechanism — when faced with tough kid challenges and fear of the future of America — is to organize. Well, to try. I’ve already shown you pictures of my playroom, so I can’t pretend. I’ve had the stamp pad out a lot. I figure anything that can go in a Rubbermaid from Target is, somehow, containable and doable. I made a new bin for Sophie’s paperwork — and that’s just the stuff from the last couple months that needs to be filed.

So we’ll have this meeting tomorrow (which will generate even more paper for the SOPHIE PAPER bin) and we’ll talk about a lot of things and I’ll bring  up the aide and I’ll get shot down and that will pretty much be that, unless I decide to go all ball buster on them and I really don’t want to do that. I wish I believed in God so I could pray for Sophie’s safety, because at this point that’s my best bet.

And here’s the kicker: My ace in the hole did not pan out. A few weeks ago, I talked to a rather zealous but well-meaning former state legislator, who was horrified Sophie doesn’t get an aide. She insisted that Sophie’s got state dollars attached directly to her, because of her diagnosis, and that I simply need to play that card in the IEP meeting, to tell the group that I know how much extra money they’re getting for Sophie, and that they better spend it on her.

So I made the calls and the preliminary figures are in. I’m double checking, since this sounds so ridiculous even for the painfully backward state of Arizona, but if I’m right, here’s the extra amount of money dedicated to a kid like Sophie (a kid who qualifies as “mildly retarded,” boy I hate that term, I think I hate the word mild even more than the word retarded!), each year of public school:

Nine dollars.

That won’t even buy my Starbucks for a week.