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.

“Is it okay if we tell her about the underwear?” one of the teachers muttered to the other toward the tail end of Sophie’s parent/teacher conference yesterday afternoon.

Underwear?

Instantly, I was on high alert. (Who wouldn’t be?)

It had been a pretty good conference, as far as these things go. I dread parent/teacher conferences. IEP meetings are an out-of-body experience that takes place on another planet, but the twice-a-year conference — everyone goes to those. I walk down the hall to Sophie’s teacher’s room and glimpse conferences through the windows of other classrooms and know very few will be as eventful as Sophie’s.

After several years, I still get wistful when her classmates’ parents post on Facebook about their fabulous parent/teacher conferences. If only I could sum up what happens in one of these sessions in a two-sentence status update — let alone share news about straight As. Or any As.

In fact, the school is trying out a new report card format this year, and, as it turns out, the highest and lowest kids fall off the map entirely, because of the way performance is measured. And so Sophie’s report card is half-empty.

But her teachers are definitely of the glass half-full mindset. I brought up all of my concerns — that math is still too hard for Sophie (turns out some days the wrong homework has wound up in her backpack, they explained she’s actually working on very simple problems); that she’s socially inappropriate (oh no, they assured me, the other kids clamor to play with Sophie — she’s not stalking anyone); that she’s all over the place, all the time (that, they admitted, is true — but seemed truly unfazed).

I sat there feeling relieved, sort of. Also feeling simultaneously like I worry too much and that I don’t have the slightest idea what I should really be worrying about.

I didn’t know what else to say.

I told them to be sure to be as firm as they feel is necessary — that, actually, Sophie welcomes it and responds to it, though it might be a bit painful for all parties involved — and we were all gathering our papers, getting ready to leave, when the underwear came up.

Yesterday morning, apparently, Sophie confided in the special ed teacher that she wasn’t wearing underwear. Which wouldn’t have been such a big deal, except she was wearing a somewhat loose pair of shorts. (And, for the record, a sports bra she definitely didn’t need. Also for the record: I do monitor what she wears to school, but more and more she’s dressing herself — a good thing, right? I thought so til yesterday.)

So off to the nurse she went, to borrow a pair of pants. And a pair of underwear.

We agreed that Sophie had most likely done it all by design — part of her goal, most days, is to make it to the nurse’s office.  She might read at a second grade level and struggle with her multiplication tables, but that kid can problem solve like nobody’s business.

On my way out the door, I grabbed a photo of Sophie’s line drawing, displayed on the wall alongside her classmates’. I didn’t have to ask which was hers. It stuck out, just like Sophie always does.

And that’s okay — as long as she comes to school fully clothed.

A real feat, the first time since Sophie’s been in her big girl bed. Every morning, it seems, she comes to us earlier. Ray calls it the “snuffle shuffle” and it’s true, she’s blessed with our noisy sinuses and who can blame her for dragging her feet at 5 a.m.? I know I do. (This morning it was 4:37, for the record.)

Usually the slightest movement from me wakes her and she’ll go instantly from deep sleep to “I’M AWAKE I’M AWAKE I’M AWAKE” at eardrum bursting decibles. A colleague at work said, “It’s like that coyote ugly thing where you wake up the next morning and have to chew your own arm off to get out of bed without that person you slept with noticing.”

That colleague does not have children. Still, I get her point.

I didn’t get the hour alone I’d hoped for, but I did get enough time before Sophie’s head popped up in the kitchen door to read a good book. The title: “My” by Sophie.

With no prompting from her or anyone else, I was able (though to be honest you might not have been) to tell that she wrote about “My family,” “My bed” (why don’t you stay in it if it’s worth writing about, was my thought there) and “My teacher.” Here’s the teacher one:

Not bad, huh?

I had a comment from a reader today who wanted to know why Sophie’s IQ was tested at such a young age.

I did a piece on this last summer for This American Life. (It’s the third piece on this show: http://www.thisamericanlife.org/Radio_Episode.aspx?sched=1249)

I think I have a clearer  (still muddled, but less so) answer to the question now, though. Probably the short answer is that I suck as a parent and didn’t fully investigate my legal options before signing the paperwork.

The long answer is two fold. It involves the school system, and also state services. And the option of hiring a lawyer, making  a lot of enemies and enduring a protracted battle (years, maybe) to get what Sophie really needs.

From the school perspective, a year ago when this all came up, I wanted the option of sending Sophie to our neighborhood school, where she could have Ms. X (pictured above, sort of), who had been her older sister Annabelle’s teacher and already knew Sophie and wanted her in her class. But the district was pushing us to send Sophie to a pull-out program for special ed kids, held at another (I’d say inferior, and the stats on the school bear that out — more important, it’s not the village we’ve been building/gathering for our family) school.

In that case, it behooved Sophie to not qualify as mentally retarded. She doesn’t technically qualify for that program. I know, I know, you can make your IEP say whatever you want it to, but not under our principal — and while in the abstract I’d always pictured myself as the parent who would sue, picket, scream, etc., it’s just not the same when your kids are involved. They have to face these people — these people you’ve snarked at, or worse — every day at school without you there.

I’ve had to temper myself. And if you know me, you know that’s not my style. I mean, I take no prisoners when it comes to cab drivers, store clerks, waiters. That’s not to say I’m still not bitchy in IEP meetings. I am. But I try not to, as I’m fond of saying at work, “freak the fuck out” on anyone.

So we wanted Sophie at the neighborhood school, mainstreamed. Yeah, I would have loved to have an aide. (I probably did wimp out too early on that one.)

That’s the school. Now there’s the state. And that’s where we’re really screwed. The state of Arizona has standards for providing services to developmentally disabled children. You have to fall into one of four categories: cerebal palsy, epilepsy, autistim (NOT PDD or Aspergers), or mental retardation.

Having Down syndrome doesn’t qualify a kid as developmentally disabled in the state of Arizona. From what I hear, this has accounted for some nice cost savings for the state and it pisses me off to no end because Sophie desperately needs speech, occupational and physical therapy and I don’t personally see the cognitive link alone on any of those — her other challenges that come from DS account for those needs.

When she was 3, the qualifications were not as stringent; a caseworker screened her quickly and approved her for services. At 6, it’s a higher hurdle. They want an IQ score if there’s any question. I asked the pediatrician, can you just write down that she has DS and is retarded? No. In the end last year, the school psychologist wrote on the paperwork that it was believed Sophie was mildly retarded due to early intervention services, but that won’t work. The  caseworker wants scores.

It could be that this is just the way it was going to be, no matter what we did. Or it could be that I majorly screwed up everything. Lately I’ve been thinking about advertising for a guardian angel for Sophie — she’s got a great teacher, amazing therapists, wonderful friends, good doctors and a family that loves her, but I’m not sure that’s enough. I need someone whispering in my ear, telling me what to do.

If you know one, please send him or her my way.