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.

We talk all the time about how tough transitions are for kids with special needs.

Hard on all kids, to be sure, but particularly tough when your kid’s brain is hard-wired at the cellular level to refuse to budge when requested. Thanks a fucking lot, extra 21st chromosome.

But how about how tough transitions are on the parents of kids with special needs?

And I’m not just talking about the daily transitions, although hours later I’m still reeling from the multi-pronged plan that allowed me to deposit my kid on the school curb just moments before the gates were locked for the day. I should have a giant blackboard like they use for military maneuvers; this morning involved strategic wake-up delivery of chocolate milk upon Sophie’s texted request from bed; the promise of her current favorite cereal (Special K) once she was dressed; my willingness to refrain from any singing or dancing during the getting-ready-for-school process and to pretend I didn’t notice when neither teeth nor hair were brushed and dress code was blown; and a lot of deep breathing. Today was one of the simpler days.

Anyhow. Back to transitions. The big ones. Like high school. Earlier this week I skidded out of work and across town to catch the tail end of New Student Orientation at Sophie’s middle school. As an eighth grader, she was asked to join her fellow cheerleaders in a performance designed to entice potential students. As Sophie shimmied and kicked I caught a glimpse of her elementary school principal and sidled up, waiting for him to finish a conversation so I could collect my hug. Of course he was here, ready to usher his current fifth graders into the middle school experience as he had been three years ago, when it was Sophie’s turn.

I still can’t look at this man without welling up. He took it upon himself to make sure Sophie’s transition from elementary to middle school was the best it could possibly be, which wasn’t great after we learned she wasn’t welcome at the schools where most of her friends were going. He personally accompanied her on a tour of the middle school. He met with the principal and staff and educated them about this quirky little kid who collected paint brushes and asked a lot of questions.

He loves Sophie and he let these people know it. Soon, they loved her too.

Looking around the gym, I saw all these people who love her — her teachers, cheer coaches, school counselor, office staff, the middle school principal — and I thought dammit, I’m not ready for another transition. Didn’t we just get here?

I don’t have a choice. Yesterday the secretary for the special education director for our local high school district emailed to set up a phone call with her boss. She didn’t say why, just that it was about our pending application. I stared at my computer screen and felt my stomach tie itself into knots.

Sophie wants to go to a school where she’s not technically welcome. Her chosen high school is out of our attendance area and because she has an IEP, she could easily be denied admission. And that’s just the beginning. Once there, there are a million considerations, things that could go wrong, requests that could be denied. We want her fully mainstreamed. We want her full-time aide from middle school to follow her. We want her to take the electives she wants to take — dance and drama — alongside her peers. I’m okay with retiring the cheer poms, but that’s about all I’ll concede at this point.

It feels like an extra tall order, particularly with talk in Washington, D.C. about dismantling special ed law and leaving it that way.

I caught wind of some interesting things about this special ed director, predicted a screaming phone call, and lost sleep last night. This morning I came into the office, shut my door, and gathered all the candles I could. I’m not woo woo as much as I am superstitious, and I decided it couldn’t hurt to make a little shrine. I added a photo of Sophie, a mug, and my favorite matchbox — which reads, “May the bridges I burn light the way” — lit the last match in the box, and waited for the phone to ring.

The phone call could not have gone better. Sophie can go to the high school of her choice, no problem. She’ll be mainstreamed. Within a couple hours I had a second call from the school’s special ed director, asking if it would be okay if Sophie missed a chunk of a school day to visit the high school for a tour? The director just needed to find the perfect student for her to shadow, she said.

“Okay,” I said, trying not to let my voice crack.

I am sentimental, but also cynical. I think I know why Sophie’s getting the red carpet treatment; I’ve put large hunks of her life, including her school experiences, on display and it doesn’t appear that I’m going to stop any time soon. But if this gives someone the chance to do the right thing — and continue to do it for other kids, after seeing how well it can go — I’m all for it. And truly, I’m grateful.

Transitions are hard on both kids and parents. The truth is, Sophie’s the one who has to do the really hard part, showing up at high school that first day, and every day after that. She’s excited for it, has been talking about it for months. She watches YouTube videos about high school wardrobes and make up, asks me every day if she will get to go to the school of her choice, the one where her elementary school friends are going. But still, I know she’ll be nervous. I know what can go wrong. If I do my job right, I’m her roadie, taking care of mini-disasters before they happen, arranging the best scenarios behind the scenes. There to catch her if she falls off the stage.

And totally unprepared and ill-equipped for the gig.

“High school’s a big transition,” both the administrators warned me this morning. “Yeah,” I replied. “I know.”

I hung up the phone after that second call and rubbed my eyes, realizing I had a headache and — perhaps related — that my office reeked from all the candles. I blew them out, choking on the smoke, but I think I’ll leave the shrine where I built it.

I have a feeling I’ll be needing it.