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.

Dear Sophie,

You know, I have been writing this blog for the last 8 years — I started it on your fifth birthday, to document your year in kindergarten — but I’m not sure I’ve ever actually written to you, only about you. So today, in honor of your 13th birthday, I thought I’d write you a letter.

THIRTEEN! How did this happen? People always say this, but I don’t know where the time went. It’s my best job and greatest honor to be mom to you and Annabelle. It’s funny, for as much as you two have changed since you were born, I feel like I’ve changed just as much — maybe more. I’m not any taller, and I haven’t learned how to do as many things as you two have, but I think I’m a lot wiser than I was before I knew you. One thing I’m certain of is that I definitely don’t know it all.

I think you know, Sophie, that you are the first person with Down syndrome I ever met. I think you and I (and the rest of the world, for that matter) are only beginning to really understand what it means to have it. I know you don’t always want it. And I get that, even though there are things about you — your beautiful eyes, your long toes, your ability to see the good in almost everyone, as well as your skill of doing the splits at the drop of a hat — that I suspect are a direct result of that extra chromosome. But I get that some days, it feels like Down syndrome is holding you back, weighing you down, and I suspect it might feel a little bit like trying to swim in a pool filled with Jell-O.

As your parents, your dad and I consider it our job to clear obstacles in your path and help you get to where you want to go — or, at least, figure out the target destination. I know Down syndrome sometimes makes that harder, and most of the time, when we talk about it, I don’t know what to say. I know parents aren’t supposed to admit that — we are expected to have all the answers. But I want to be honest. That is why I sometimes just give you a hug when you say you don’t want to have it.

But today, I know exactly what I want to say to you, on your thirteenth birthday. I know that you are the one who will be blowing out the candles and making that big birthday wish, but I have a wish for you, too, dear Sophie.

Please don’t grow up so fast.

I am surprised to be saying that. You see, when you were born, I worried that in a lot of ways you would never grow up. Down syndrome can mean so many things for so many people, and we did not know if you would walk or talk or read books. We didn’t even know if you would survive heart surgery. And so I wished hard for you to grow up — to get potty trained so you could go to kindergarten, to learn to swim, to study math and science and all the hard stuff at school.

You did it. You exceeded our expectations on all of the above, but more important than that, you are growing into a young lady with grace, poise, mad style and a wicked sense of humor. I love to be around you. You are not just my daughter, you are my friend. And you are a friend to others. Almost every day this year when I dropped you off in the carpool lane, you marched right into junior high, usually pausing to wait for a friend or two (or two boys at once!). I envy that about your, your easy ability to make friends and your desire to celebrate them, like you did when you called your BFF Tatum onstage with you during your choir solo so you could sing to her and share the spotlight.

The other day you told me that the first thing you wanted to do when you finished seventh grade this week was go shopping for school supplies for eighth grade. You always want to know what the plan is for the next hour, day, week, month. You love to make plans — for sleepovers, college, career paths. I get that, I have always been the same way. But it’s funny, for as much as I’ve spent the last 13 years pushing you forward and worrying about you growing up, now I want to yell at the universe, “Slow down!”

Don’t grow up so fast, Sophie. Don’t be in such a rush. The other day, you and your sister performed in your ballet studio’s annual recital. This year’s theme was Peter Pan and I sat in the audience and cried, watching the two of you dance so beautifully, so grown up and still children in so many ways. There is no Neverland, no way to freeze you like this forever, as you stand on the brink of becoming a woman. I wonder, Sophie, now that you’re a teenager, will you still cuddle with me? Eat chocolate ice cream for every occasion, and not care at all if you get it all over your face? Suck your thumb? I hope you give up the thumb — those braces were awfully expensive — but never the cuddles. You will always be my little girl, even in the high heels and  hoop earrings that top your list of birthday gift requests.

I will be honest. I don’t know exactly what the future holds for you, Sophie. I don’t know what it will mean to be a teenager with Down syndrome. We will have to figure out that one together. But if the last 13 years are any indication, the next 13 are going to be pretty awesome.

Happy birthday sweet girl!

Love,

Mom

Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published by Woodbine House this spring and is available through Amazon and Changing Hands Bookstore. For information about tour dates and other events visit myheartcantevenbelieveit.com and here’s a book trailer.

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.

Last night, the girls and I sat at the dining room table to do homework. Annabelle had some fancy-schmancy assignment involving decorating her spelling words (some nights it’s drawing them in a shape of pyramid or making them blocks), so once Sophie finished reading her little book, I took her spelling words off the fridge, handed her a pen and paper, and told her to write them. Just once.

It took a while.

Sophie delighted in drawing each letter carefully, drawing big circles over every “i”.

“You know,” I told her, “sometimes it’s really fun to put a smiley face inside your i.”

Without missing a beat, the pen left the paper — headed for her eyeball.

Annabelle burst out laughing and sucked wind at the same time. I grabbed the pen and looked Sophie in the (luckily still-unmarked) eye and asked, “You didn’t really think that’s what I meant, did you?”

She just smiled.

Inside, I was sad. Of her many challenges, the greatest might be Sophie’s handwriting. We got through five words last night and that filled the page (I know I should have lined paper, though it wouldn’t have made much of a difference). She tries hard, but it’s tough. You can see it in the picture. We need to make some big decisions about how to proceed: Should Sophie learn to keyboard, which might be easier for her but would set her apart from the class? Should she be receiving more occupational therapy for writing? Are there other remedies? Or should I not be so concerned?

These questions need to be answered, and soon. That’s why I was so frustrated this week with the special education teacher. Sophie’s IEP requires that after the first month of school, a meeting of her entire team (teacher, therapists, special ed instructors) be held to assess how she’s doing. Writing will certainly be at the top of the list — if we ever do have that freaking meeting.

I know the beginning of the school year is a crazy time, so I held back from asking about the meeting. I wanted to see what would happen. By last week (five weeks into the year – and experience tells me it will take at least two weeks to schedule this meeting)  I was not pleased. So when the principal stopped me to ask my opinion about something unrelated, I mentioned that the meeting hadn’t been scheduled.

I had a call from the special ed teacher that afternoon. But when we finally did communicate a few days later, she suggested we ask each therapist to simply send a note home about Sophie’s progress.

The guilt bug bit, but not hard enough for me to agree. I wanted to say okay — it is a lot of work to gather everyone — but again, experience teaches me that the group needs to sit down in person so we can share news about

Sophie’s progress and problems, and brainstorm solutions.

A meeting’s in the works, I’m told. Meanwhile, October looms. I’m beginning to worry about second grade. And now I have a new concern — that my daughter will try to draw a smiley face on her eyeball, at my behest.

Good thing I didn’t tell her to make her “i” into a daisy.

I’m grouchy. I hate the word “special”. I keep thinking of that Saturday Night Live character who used it all the time — “He’s so SPECIAL” — you know, the one who lisped a lot. I’ll have to look up the particulars.

But that task is for another night, because tonight I will not be googling. Nor going to bed right away. I’m headed to the couch with “Breaking Dawn,” the embarrassingly addictive fourth Young Adult novel by Stephenie Meyer. (Lauded as the next J.K. Rowling, but for teenage girls and pathetic, panting older women. I’m horrified to admit that these are vampire books. With werewolves in them.)

I stayed up late last night reading the book (it’s ginormous — probably 600 pages) and was up before the proverbial dawn, reading it again, thanks to Annabelle’s Digi-Pet, which started demanding “food” at about 4 this morning.

I do not know how the rest of my family slept through the very large beep that came out of that very tiny piece of plastic crap, particularly since it was nestled about, oh, five inches from Annabelle’s head. I finally crawled out of my own bed, wrestled with AB’s alarm clock til I realized that wasn’t the culprit, grabbed the Digi-Pet and deposited it on the dining room table, on the other side of the house. I narrowly avoided stepping right on a gecko carcass. (Why does the cat insist on leaving the torso?)

I crawled back into bed, but since I had stupidly sworn off Benadryl (for one night, anyway) I was wide awake.

So I headed to the couch with Bella, Edward and Jacob. I won’t spoil the story (so far) for anyone who might dare lift the brick of a book, but I will echo just about everyone else I’ve heard from: in a word, disappointing.

But no less crack-esque than the four-quel’s predecessors. It made me miss Megan, my writer who recently left the paper. In my head, Megan will always be Bella. Now, 99% of that’s because Megan profiled Stephenie Meyer (she lives in metro Phoenix) last year for New Times (you can read the excellent piece at http://www.phoenixnewtimes.com/2007-07-12/news/charmed) but just a teeny bit is because Megan’s got pale skin, long brown hair and big brown eyes — just like Bella. She even left Phoenix for the Pacific Northwest, an irony not lost on Megan. (This is a woman on whom irony is never lost.)

And both women have a lot of poise.

Megan and I have a big disagreement: She’s all about Jacob, while I’m firmly in Edward’s camp.

If you don’t know what I mean, break down and buy “Twilight,” the first (and by far the best) in the series and just see if you can get any sleep. Just make sure you hide your kid’s Digi-Pet deep in a kitchen drawer.