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.

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.

It was all idle chatter, til the phone rang a couple hours later. I love Ms. X. She promised she’d let me know any time anything happened, and she has, so far. The phone rings almost every afternoon. This time she sounded serious. Turns out, Sophie actually left the classroom, and headed, in her high-spirited way, right down the hall toward the main door (which isn’t so far from the street). Ms. X caught her and gave her a time out and was very, very stern with her.

Sophie knew. She immediately walked to the bulletin board, where the “green behavior slips” are posted (make it through the day without losing the slip, and a note goes home saying you were “super”) and silently handed it to Ms. X.

“She’s not dumb,” I said.

“Oh no,” Ms. X replied. “She’s not dumb.”

She’s not. Just this morning, Ray and Annabelle and I marveled at a dozen things Sophie did and said.

But her behavior is simply unacceptable. And exactly what I was worried about.

What am I supposed to do? Put Sophie in a contained, dumbed-down classroom she can’t escape from? (I’m not sure such a place even exists; she doesn’t qualify for it cognitively, in any case.) Or hold my breath for the unforseeable future?

Or get a micro-chip?

And I’m the first to admit my reaction here is likely super-premature and overly sensitive in an It’s All About Me way, but something happened outside Sophie’s classroom this morning that raised my hackles. (What the heck ARE hackles, anyhow?)

Sophie was being her before-school-ball-buster self — preferring to stand in front of the classroom rather than move to the playground (truth be told, she really wanted to be indoors with the teachers, but that wasn’t going to happen), demanding her water bottle from her backpack. Hey, it’s a new one and it’s got Abby Cadabby on it so I can hardly blame her. But to other eyes, it probably looked like my kid’s just a huge pain in the butt.

I felt a set of eyes headed my way, from on high, and looked up to see a football-jersey’ed dad watching me, carefully.

“Are you her mother?” he asked, pointing to Sophie, who was wriggling in my arms, trying to get her water bottle open.

“Yes.”

“How old is she?”

I dispensed with my usual cutesy, “Sophie, how old are you?” and simply answered, “Five.”

“Oh. That’s my son,” the guy said, pointing. “He’s 4.”

“Oh.” Long pause. “Um, I’m Amy.”

The guy introduced himself and was pleasant enough, I suppose, though he made sure to tell me his kid’s kindergarten experience wasn’t going so well. I made some meaningless comment about kindergaren being hard on all kids and the guy said something like, yeah, well, in this life things don’t always go the way you want them to.

No duh, dude.

He kept staring at Sophie. He didn’t say hi or try to engage her. Then he turned away and started discussing tennis shoes with another dad.  

What I didn’t tell the guy is that kindergarten is particularly hard on kids who aren’t yet 5. I know that from watching the action in Annabelle’s classroom, when she was in kindergarten. I have to admit, I was 4 myself when I started kindergarten, so I’m being hypocritical, making any sort of comment, but hey, when has that ever stopped me? I do know that while it’s allowed, the sticking-your-kid-particularly-your-boy-kid-in-kindergarten-before-5-thing is technically allowed (I think the kid has to turn 5 by December) but somewhat frowned upon, at this school. I’m guessing the guy’s kid has had issues and he’s complained and he’s been told, well, he’s not quite old enough, is he?

I’m no mind-reader, so I’m worried. I’m hoping that guy was just wondering about Sophie’s age because she’s so teeny, rather than wondering why this kid with Down syndrome is in a regular kindergarten classroom, sucking attention away from his kid.

I’ll have to watch The Man with the 4-Year-Old Son…..

I don’t think a penny chart will work in that case, but I am hopeful it will help Sophie. We are in the process of listing possible motivators: a trip to the bookstore/pet store/Chuck E. Cheese, New Piglet at rest time, Sesame Street computer games, and as an extra special reward, chocolate ice cream with Ms. X.