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.

Dear administrators, teachers, and staff:

Before I say anything else, thank you.

Thank you for creating an incredible environment for my daughter. Two and a half years ago, I sat in the audience at Sophie’s fifth grade graduation and sobbed, convinced her education (both academic and social) had come to a halt, that we’d never find such a nurturing and inclusive environment for a kid with Down syndrome in a junior high setting.

We’d had a rough time finding a middle school — every one from the charter her older sister attends to the public junior high across the street from our elementary school had made it clear that Sophie was not welcome.

Not only did your school welcome Sophie, your arms were open and have remained so. I am already stocking up on Kleenex for the eighth grade graduation ceremony.

Sophie is a cheerleader. The school has started a Best Buddies program and soon, Special Olympics. She is a homeroom rep for Student Government. She is in honor choir and can’t wait for end-of-the-year trip to Disneyland. She is fully mainstreamed in the classroom and on campus she knows everyone from the school cop to the school nurse. She’s even made a couple friends.

To me, it’s no surprise (although on a political level it’s a little concerning — a battle for another day) that your school’s mascot is the Crusader. In the last couple years I have watched Sophie become her own best advocate, fighting for what she wants, crusading for her causes. You always listen, which I love.

I fully recognize that her requests are often not appropriate. I’m not writing to you today to ask you to abolish the school’s dress code or to let Sophie into the college-prep program (although I see her point in both cases). But I will feel as though I’ve failed both as a parent and a community member if I don’t once again mention another cause that’s nagged at me for years now. You’ve all heard both Sophie and me rail on this already.

Here goes:

Sophie wants to take drama as an elective. It is not currently offered at her school, has not been her entire time there.

True, there have been attempts. There was an after-school drama club. In my estimation, it did not go well. Last year Sophie took “musical theater,” and that was worse. I cringed at the year-end concert, watching my daughter sing along to a karaoke machine. I’m not asking for a lot in the way of instruction, but that was definitely a low point of our time at the school.

There’s a solution to this drama thing, and it’s literally in the school’s backyard.

Drama is offered as an elective at the gifted academy housed on the same campus as the general ed public school Sophie attends. There are other electives, as well, all open exclusively to the gifted students.

And yet the gifted students are allowed to take any general ed elective they choose.

Like I said, this has nagged me for years. It’s a pretty well-kept secret. I never would have learned of it if Sophie hadn’t told me. In fact, as it turned out, she had been cornering the gifted academy’s principal at lunch for weeks already, asking him to let her take drama. This was followed by my own request, which I took up the ladder to the superintendent.

I never really got an answer, which I suppose was my answer. But I’m here today to ask again.

I don’t just want Sophie to be able to take drama at the gifted academy. I want you to tear down that wall and open all electives to all students on this small campus. There are so many good reasons to do it, reasons that would benefit all the children.

Look, I’m not asking you to let all the kids take the same math class. And I understand the value of having a prestigious gifted school on campus — it’s a way to keep parents from sending their kids to charter schools, for one thing.

I get it.

But there are other things I get, too. When this issue first came up, I talked to a kid from the gifted academy about it. He had taken drama. “Hey, what would happen if the general ed kids were able to take drama at the gifted academy?” I asked.

He didn’t hesitate. “Those kids are so poorly behaved,” he said. “It would be terrible.”

I haven’t crunched the numbers, I’m not sure they are even available to me in the breakdown I’d need them, but anecdotal evidence tells me that the two schools have very different demographics, both racially and economically. (By the way, I do know that the gifted academy has enrolled a few kids with special needs and that’s awesome, but it doesn’t affect this argument.)

This is not an issue about special education, or about Sophie. This is a matter of civil rights and it affects every kid on both campuses.

Speaking of special education, something really amazing happened this year. Sophie’s school DID start offering a drama class on campus — exclusively to special ed students. That, along with other changes I’ve seen and heard about, such as kids with IEPs being more fully included in academic settings — is wonderful. I’m so happy to see kids with special needs receive more programming.

But here’s where it’s left you:

You have a drama class for the gifted kids. You have a drama class for the kids in special education. And you have nothing in between.

What you have is segregation. In drama. One of the few places where you could do some freaking amazing inclusion! What are you people thinking?

I get that this is the least of your worries in this current political climate. I get that Sophie and I are a pain in the butt. But just imagine, what if you blew things up next semester and opened your drama class to ALL kids. Put the gifted kids in with the kids from the self-contained special needs classroom. Toss some kids in from the general population. Dream big!!!

I know what you are thinking. “Dream on, lady.” Okay, I will. And I will push for change.

Please let me know if there’s anything I can do to assist you. And again, thank you.

I am so grateful to Sophie’s teachers — past and present — and to everyone at her school (she pretty much knows them all by name!) for educating, enlightening and including my little girl.

Sometimes, knowing where to begin to say “thank you” can be tough.

As usual, Sophie gave me the best lesson when it came to a concrete example of gratitude, in the form of notes she wrote last night to her teachers. I gave her a stack of hot pink index cards, a fine-point Sharpie and a list, and asked her to write a note to each of her teachers. She’d had a more-than-full day, including homework and ballet class, but she complied happily, occupying herself at the kitchen table and leaving a pile I didn’t turn to till early this morning as I was furiously shoving salt water taffy and iTunes gift cards into bags.

Check out the note (photo above) that Sophie wrote to her Language Arts teacher:

“Thanks for teaching me all of those awesome things to me and reading The Outsiders. Sophie”

To the math teacher: “Thank you for teaching me all of math.”

And to her beloved aide, who has been with Sophie (but not necessarily by her side from third grade to seventh, and if you have any knowledge of how it’s supposed to work with a one-on-one aide you know what I mean): “Thank you for traveling with me from elementary school to this point.”

I couldn’t have said it better myself. The girl can write. I’m bursting with pride — and gratitude.

For many years, I wrote about Sophie’s school without naming it. Now that she’s finished there — moving on to junior high — I have no reason to keep the name a secret — and every reason to tell you what a fabulous place it is. Was. Is — for lots of kids. Not for Sophie, not anymore. School’s been out for a week and I still can’t think hard about it without blinking back tears.

I’ve been lucky enough to have had the chance for several years to chronicle Sophie’s adventures on KJZZ, the Phoenix National Public Radio affiliate. I did a commentary about Sophie’s first day at Broadmor Elementary School.

And I did a commentary about her last day there, too. Three minutes wasn’t nearly enough time to express my gratitude — but I hope I made my point.

Here are each of the pieces:

Sophie’s First Day of Elementary School

Sophie’s Last Day of Elementary School 

This morning Sophie and I toured a charter school in downtown Phoenix, our first visit out into “the field” as we look for a junior high for her.

“That was fun!” she announced when we got in the car.

“Really?” I thought to myself. “Because I feel like I’ve been through a meat grinder.”

The school is wonderful in so many ways — K-12, with a warm, family feeling and nice facilities. The staff are clearly devoted.

And it was obvious that none of them had ever encountered a kid with Down syndrome. (Or if they had, not much.)

We’d been to the auditorium (where Sophie begged to get up on the stage; I said no); to the dance studio (where I’d given in and let Sophie perform her role from the Snow Queen for the education director and special ed teacher); to the gym, cafeteria, and math/social studies classrooms when I pulled the education director aside and said, “So, I hear Sophie would be the first student with Down syndrome at your school.”

“Oh yes,” she said, laughing nervously.

“So what do you think?” I asked. Sophie had made it up the long staircase, but barely. She kept sneaking her thumb into her mouth. She identified equipment in the science lab, shook hands politely with teachers, stared back (not impolitely) at the kids who stared (not impolitely) at her. In all, a mixed bag of behavior.

But still, I figured this woman would talk about how smart Sophie was, how witty, how well she’d fit in. She didn’t.

“Oh boy! Well, um, yeah,” she fumbled. More nervous laughter.

I interrupted. “It’s okay, I’m sorry, I didn’t mean to put you on the spot.”

And I was sorry. The tour continued; I stayed behind for a moment to compose myself and snapped a photograph of a quote on the wall outside an English classroom:

“It is our choices, Harry, that show what we truly are, far more than our abilities.” — J.K. Rowling.

I have not read or seen Harry Potter (I know, I know) so I’m not sure of the reference, but the words rang in my head. This junior high thing is all about choices, and I’m the one who has to make the choice. I am the steward. If I screw up, Sophie suffers. (And other people, too, potentially.) Yes, Ray is part of this, but really, it’s me.

And I don’t do well with choices. As we walked down the stairs I thought about the last time I had limitless choices — just after graduate school. I had no boyfriend, no job, just a few boxes of books and cassette tapes. I could move anywhere, do anything. I sent out resumes, interviewed for jobs, trained as a bartender (that didn’t go well), even got a few offers. In the end, I froze. I came home.

And in the end, it was the right decision.

I want to make the right decision for Sophie. But there are too many choices — and none are right. I’m beginning to feel like Goldilocks.

Walking down those stairs, I knew this school was not the right choice. We were all quiet (except Sophie) as we walked back to the office. As we approached the door, the education director interrupted the silence.

“You know, when you were asking before about a student with Down syndrome going to this school….”

“Yes?”

“Well, I guess what I meant to say is that we’ve never had the experience before. For whatever reason, it hasn’t happened,” she said. “The thing is, we’d all be learning together.”

I looked up and smiled at her. I felt better. Better enough, at least, to fill out the lottery form before we left.

I pulled up to Sophie’s elementary school and jumped out to help her out of the car. She held her arms wide. “Hug!” she said.

I wrapped my arms around her, Olivia the Pig backpack and all, and held on tight. Then I sent her off to her sweet little school and tried to remember, as I pulled away, how hard it was to make the choice to send her there.

“Sophie had a really bad day today,” she said. We were on the phone, but I could see her shaking her head. Sophie was out of sorts all day, in ball buster mode, totally stubborn. Refused to come in from the playground, wouldn’t listen to directions.

“Oh, and she bit someone,” Ms. X said in a rush, like it was an afterthought. I know she knew I’d freak.

“SHE WHAT?!”

“She bit someone. But, but — it wasn’t bad. She just took a kid’s fingertip in her mouth. I don’t think she meant to really bite. It didn’t break the skin.”

Apparently another kid actually left a bruise on a classmate last month, so this really wasn’t much by comparison. Still, Ms. X and I both know it’s got to be nipped in the bud. (So to speak.) Sophie was sent to another classroom for 15 minutes, and it was during Reading Buddies, when Annabelle’s class was there to read with the kindergarteners. Big punishment.

As always, I could tell Ms. X felt badly about being stern with Sophie. And she was quick to tell me that the last 20 minutes of school, Sophie was absolutely perfect.

Super.

“And as she was leaving, she gave me a hug and said, ‘You come my house Thanksgiving!’” Ms. X reported happily.

I was not happy. I called Ray to report on the day’s events and warn that he not mention the bite. We don’t want to make a big deal, I cautioned.

“OK, no problem,” he replied, not seeming concerned. “I know where she got it.”

“Where?!”

“From watching `Charlie Bit Me.’”

Grr. Not on my watch. I’m the queen of inappropriate, but even I have my limits.

Am I the only one who doesn’t find that You Tube video funny? Check it out for yourself if you’re among the handful of Americans who hasn’t seen it:

http://www.youtube.com/watch?v=HE4FJL2IDEs

Word around school this week is that Sophie’s been swiping other kids’ drinks at lunch. She drains her juice box and nabs someone else’s drink, particularly if it’s strawberry milk. I stuck 35 cents in this morning, so she could get her own, which she thoroughly enjoyed.

I didn’t mean to be in the cafeteria during her lunch hour, but Sophie spotted me at school this morning so I promised to reappear at lunch — then hustled through Mrs. Z’s Xeroxing (man, I better not quit my day job — the copy machine and I DO NOT get along) and made it over for most of the kindergarten lunch hour.

Arrgh. I’d heard all about kindergarten lunch — it’s legendary — and most recently, both my mother and Sophie’s occupational therapist had spent time in the cafeteria, observing.

What a freaking mess. I know the idea is to let the kids blow off steam during the lunch hour (um, it’s hardly an hour — 30 minutes from start to finish, including time on the playground) but it’s ridiculously out of control in that cacophonous, smelly, linolium-lined lunch room. I didn’t see one kid finish his/her lunch. Probably a good thing, considering what they were serving — something that passed for a BBQ rib sandwich. I had to ask a kid what it was.

Sophie brings her lunch, mostly so I can put stuff in that she’s able to eat easily and quickly. It was a liquid lunch for her today (probably every day); I was lucky she consumed half a mini-quiche. The raisins went untouched and the cheese/crackers were just played with.

And Sophie stays in the lunch room almost the whole time; I was blown back against the wall when someone blew a whistle and most of the kids cleared out to the playground. Before the half hour was over, I’d clapped my hands over my eyes at least twice. (It is true that I scare easily.)

I braced myself for the playground, having been warned about the horrendous ratio — every kindergartener in the school versus one “duty” (please, someone, come up with a better term!). The woman walked around the playground, looking hard and blowing her whistle; but lacking eyes in the back of her head, I just don’t see how she (or any one person) can adequately watch all those kids.

Last week when my mom was there, a little girl wet her pants. Today a kid fell and skinned her hand; she didn’t know what to do. Neither did I.

As I’ve written before (I’m almost sure I’ve covered this already in some depth) there is no law — state or federal — regarding playground ratios at public schools. The ratio at the aftercare program at our school is 12 kindergarteners to one adult. In the classroom it’s as high as 23 (maybe higher) and outside, apparently a 1 to 90 (or so) ratio is cool.

The duty has a walkie talkie, the principal told me, the first time I complained. Anyhow, she said, the school’s not violating the law.

Yeah, I replied. Because there is no law.

I’m holding off while I formulate my second complaint. I need more ammo. And, yeah, less snark.

At first, they worked so well, it seemed like a miracle. But I knew it wouldn’t last.

Like most souls, Sophie is very interested in a good bribe. I see nothing wrong with that. Positive reinforcement is what it’s all about, as far as I’m concerned. I do it with myself constantly. (Go for that long walk and you can have a double non-fat latte! Do the dishes and I’ll let you read those back issues of Vogue and Elle you’ve been hoarding! Write a paragraph, shop on etsy.com. Organize your bedroom and as a special treat, you might get to see the floor again!)

You get the idea.

The system with Sophie in kindergarten is a little more intricate. A chart was fashioned with velcro and laminated (someday I will blog about laminating, I promise. Short story: I am afraid of the laminating machine) cut outs of Elmos.

Each morning, Sophie works to “earn” 5 Elmos. Same in the afternoon. The rewards vary, to mix it up and keep her interested: Courtney, the latest Wonder Nanny (we have a team of 5 at the moment!) actually purchased and painted a “treasure box” and filled it at the dollar store. Or Sophie can work for chocolate ice cream with Ms. X or on a very special day, a trip to Chuck E. Cheese.

I think her favorite reward, though, is a chance to stay after school and play teacher. And therein might lie some of the problem: Sophie, not unlike her mother, is a control freak.

So it’s no wonder the bribes aren’t working, the ante must be upped. I have one shoe on and one off, in preparation for that latte-earning walk, so this is To Be Continued.

But if anyone has any ideas for a good bribe, send them my way!

It’s a tradition at the girls’ school. (The festival, not the spying.) Every Halloween, all the kindergarteners — and only the kindergarteners — parade through the school in their costumes. Cutest thing ever. Then they gather in the cafeteria for the morning, where sevearl stations are set up with carnival-like activities: story telling, cookie decorating, pin-the-smile-on-the-jack o’ lantern. That kind of thing.

I signed up immediately as a helper for the morning. It was my first real look at Sophie in action, amongst her peers. I’ve banned myself from her classroom, which kills me. Not that I have so many hours to volunteer, but I’ve always managed some lurking time in Annabelle’s classroom. It’s good for her to see me around, and even better for me to see what’s up in the space my kid occupies for such a big hunk of her life.

Last year when Annabelle was in first grade I got an eyeful of just how much time some teachers spend texting (hey, it was a new boyfriend, cut her some slack) and got to organize someone else’s supply closet — which for some reason is infinitely easier than organizing any of my own crap. This year I’m in absolute awe of Mrs. Z and her Smart Board (google it if you’ve never heard of one — amazing) and her ability to keep just enough control over a group of 7 year olds to get them to work without feeling like they’re working.

And while I’m grading homework, I get to keep tabs on the kids’ social lives. I admit that’s the best part.

But I’ve never gotten to hang with Sophie’s class. In pre-school, parents were pretty much banned from the classroom. At first I was really upset, but Sophie’s wonderful teacher promised she’d be a different kid with Mommy around. “We’ll videotape her if you want,” she said. I was allowed to come at Hanukkah, and the teacher was right: Sophie spent the whole time showing off for me and disrupting the group.

Lesson learned, sadly, so I’ve stayed away from kindergarten. I’m lucky because Ms. X keeps me posted on classroom activities and Sophie’s ups and downs. But as I stood with Sophie the other day before school, I realized I know very few of the kids in her class. Several of the girls, yes, but not many by name, and the only boy I recognized was the one who came to school on Picture Day with both ears pierced. (He’s memorable, and also a good friend to Sophie.)

The Kindergarten Festival went well, although I got stuck at the math station — not my strong suit. OK, I admit it’s not like it was algebra. The kids made patterns with construction paper pumpkins, ghosts and bats. Still, it was stressful, and partly because I was afraid of what I would see. Would the other kids  leave Sophie in the dust?

Let’s say I was pleasantly horrified. I’d figured she’d emerge as the slowest, but as I got to see each kid complete (or not) an activity that required a bit of concentration and effort, I realized that Sophie’s hardly at the bottom of the pile.

I’m not deluding myself, trust me. Well, maybe I am, but not entirely. Last week the “Clifford Journal” came home — the kids are allowed to take home a stuffed Clifford the Big Red Dog to play with, then asked to write about the “visit” in the journal.

My eyes welled up as I flipped through the book. Many kids had drawn fairly intricate portraits of Clifford engaged in activities around the house, along with several well-constructed sentences describing the visit.

Sophie wrote her name in her Sophie way, and drew a, well, a more rudimentary picture than the others in the journal. She dictated her description of the visit to me, which I dutifully wrote, verbatim:

“Don’t feel bad,” Ms. X said when I mentioned it. “I’ve watched parents dictate to their kids. They don’t come up with that stuff themselves.”

But even that wouldn’t have worked with Sophie. She still has trouble forming the letters to more than her name, dictated or not.

So I was nervous as I set out glue sticks and paper cut outs. And yeah, I saw my share of whiz kids. But what surprised me was how many kids were completely unable to do the simple task at my station. Although patterns are a big thing in kindergarten — the precursor to math and all that, something that has no doubt been covered to death by three months into the school year – some children stared blankly when faced with the task. A few couldn’t figure out how to rub the glue stick on the back of the paper, or how to get the finished product into the brown bag they were carrying around.

By the end of the morning, I’d decided several things:

I will never, ever teach elementary school.

Sophie’s doing just fine in kindergarten.

And she looked damn cute in her Cookie Monster costume.

I reconnected this week with a lovely woman in town whose daughter is just about Sophie’s age, and also has Down syndrome. We wrote on each other’s “walls” on Facebook (if someone can explain that whole Wall thing versus the Email thing versus Status Comments, please do, and while you’re at it, what the hell does it mean when someone Pokes you?) and swapped quick kindergarten tales.

I’ll cut to the chase. Her kid — who goes to a public school in a neighboring district — gets a personal aide in the classroom 18 hours a week! That’s huge! Sophie doesn’t get someone to walk her from the cafeteria to the playground.

Something’s wrong with this picture, and if it was in reverse, I know this lovely woman would be kicking my butt toward an advocate or a law office. I need to do something. As Sophie’s physical therapist said this morning, it’s about her safety. I don’t want to rock the boat. But how can I help it?

Damn the economic crisis — we couldn’t sell our house and move to that better district even if we wanted to. And open enrollment is not an option for special needs kids; they’re too expensive.

At least Fall Break starts tomorrow, so I can indulge in one of my favorite pasttimes: procrastination.