The other morning, Sophie emerged from her bedroom just as it was time to zoom out of the house, hurl ourselves at the car and drive three blocks at NASCAR speeds to make it to school before the bell rang.

“I want to use this,” she said, something pink and familiar dangling from her fingers.

It was her Olivia the Pig backpack from second grade. Damn, I didn’t do such a good hiding job, I thought, wondering how hard she’d fight this one. Hard, as it turns out. Really hard. In the end, I quickly transferred folders, lunch box and library books from the fifth-grade appropriate, plain purple backpack I’d purchased at the beginning of the school year — and Sophie climbed into the car with Olivia.

At least it’s not Elmo, I thought as we roared out of the driveway, heading for a late slip.

I know that lots of kids (and adults) wear clothing with cartoon characters on it. But this is not the same. The other day, Sophie told me the differences among a narrative, opinion and explanatory essay, and she can hold her own during an episode of Project Runway or something on Animal Planet and she loves PitchPerfect, but really, she’d rather be watching Olivia — or better yet, Elmo.

I’ll hold you captive for half an hour complaining about the school psychiatrist who had the nerve to tell me when Sophie was 7 that she had the cognitive abilities of a 3 year old, but the truth is that in a lot of ways, Sophie is Elmo — stuck in a tiny body with a baby voice and a lot of questions on perpetual repeat. A 3 year old.

That’s where her comfort zone is, anyway. I’ve worried about this since Sophie was 3 and I threw her an Elmo party and realized that most of the Elmo favors at the party store actually said “1″ on them, not “3.” Already, she’d fallen behind. Years ago, I quietly got rid of all the Elmo toys, the videos and DVDs, telling myself she’d find something else to watch, to love. And she did. Olivia, for example. Even Monster High and American Girl.

But Sophie still goes for Elmo every chance she gets, even as she reminds me that she’s almost 10 and a half — old enough to get her ears pierced, old enough to wear a padded bra, maybe even to get her own phone. I change the channel, hide the errant book, steer her to a different toy aisle. It doesn’t matter. She finds Elmo anyway.

One day last month during Fall Break, Sophie and I were at Whole Foods, and she zeroed in on juice boxes with Elmo on them: Elmo’s Punch.

She wore me down, and when we got home I made Sophie her favorite lunch and handed her the iPad as I reached for my laptop, eager to sneak a few minutes of work in. Sure enough, she searched the internet and found herself an episode of Elmo’s World, cracked open an Elmo’s Punch juice box and kicked back.

This time, instead of being annoyed, I couldn’t help but notice the grin on Sophie’s face. It doesn’t get better than this, does it? I asked her silently, taking the whole thing in. She exuded such a sense of peace. Probably how I look when I’m getting a pedicure and reading People magazine.

Oh well, I thought, she’s on vacation. Live it up, Sophes!

It’s been a few weeks since that day, but the image has stuck in my head. Who cares if Sophie loves Elmo, I ask myself. I do, I answer, picturing myself dropping her off at junior high with her Olivia backpack or in her Yo Gabba Gabba shoes, watching the big kids point and laugh.

Elmo’s Punch.

Sophie is obsessed with the night.

One of her first questions each morning: “What are we doing tonight?”

Can we go out to dinner, will we see anyone special?How about a movie? A trip to Claire’s? And — always — can she sleep in our bed? Ray and I are pretty lenient with that (too lenient) but some mornings, particularly after she’s kicked me all night, the answer is NO.

The biggest question, even bigger than how she’s going to manage to get in my bed, is, “Can I have a sleepover?”

Your house, our house, it doesn’t really matter. The other day I was horrified when Sophie turned on the charm a little too hard in Trader Joe’s, greeting people randomly (something she doesn’t always do, I swear) and at one point even inviting a little girl she’d never met to come over for a play date.

At least it wasn’t a sleepover, I thought, as I steered her away from a drop-mouthed mom and a confused child.

Usually, it’s Sarah, the BFF (or B for short) who sleeps over, and I laughed hard on Saturday morning when I found a comic Sarah drew the night before. (Probably because she was bored after Sophie fell asleep so early.) It’s true, after all that cajoling about The Night, Sophie is typically asleep before 8.

I understand, I’m often right there with her, collapsed on the couch. But I can usually hold off if I’ve got a friend over.

Last night, Sophie and I settled in on the couch for what I euphemistically call a “reading party.”

Well, I settled in. Sophie was back and forth to her room for more books, finally deciding on Judy Blume’s “Then Again Maybe I Won’t,” begging for another round of Go Fish, scooting all over the place trying to find the right spot in the crook of my arm.

I was a little annoyed —  two-thirds of the way into “Wonder,” a really amazing YA novel, and sick of the interruptions. Which didn’t mean they were going to stop.

“Mommy, why I have heart surgery?” Sophie asked, putting her book down. I put mine down, too. This one required full attention.

“Because you have Down syndrome,” I thought, automatically. 

But something told me not to go there.

“Because there was a little hole in your heart and the doctors needed to sew it up,” I said, stroking her hair.

Satisfied, she turned to other topics — should she get another book? When was Daddy getting home from the gym? Frustrated, I hushed her. Defeated, Sophie picked up her book, burrowed her head into my side, and took my hand, carefully placing it on her chest, where the bones still make a big bump.

I put my book down again.

“You’re thinking a lot about your heart tonight,” I said, a little worried. I always wonder if Sophie knows something I don’t know. “Why?”

“Because I don’t want to have Down syndrome,” she said, carefully pronouncing it — sin-drum — like we’ve practiced. “I want to be like you and Sarah.” (Sarah is Sophie’s best friend.)

She’s said it before, so I wasn’t surprised. But I’m no more prepared now for how to respond than I was the first time it happened, a year and a half ago.

“I love you, Sophie,” I said into her hair. “I love you so much.”

“I just want to be like my friend,” she said in a tiny voice.

“I know,” I said. A few seconds later, she was asleep. I stayed awake long enough to finish “Wonder,” and looked up at the end, startled to find myself in my living room. I love it when a good book does that to you. I put the book aside and stood up carefully, even though I knew nothing would wake Sophie now. I stared down at her beautiful, peaceful face (and if you’ve read “Wonder” you’ll get this part) and thought about how lucky Sophie is — and how she’ll never really fully grasp that, even though her teacher read the book to her class last year.

And then I hoped that someday she can read well enough to be able to lose herself in a good book.

It seems like a reasonable wish.

I thought about writing here that I wish I still had a cassette player and tapes for it so I could make a mix tape, but that’s not true. To be honest, that was a real pain — ending the tape at just the right spot, making sure there was enough room, the occasional fail when the tape player eats the only copy of your favorite mix. But please, don’t take away my CDs. Not yet. I’m in the process of computer shopping, and was horrified to learn that it’s not really acceptable anymore to have a CD drive on your laptop.

“Don’t you have a device to listen to music on?” the IT guy asked, looking puzzled. Of course I do. And I also have a CD player in the car and one at home because I can’t figure out how to put the music on the device(s).

“Hey, don’t rush me,” I muttered.

Even my high-tech husband agrees that it’s too early to completely abandon CDs. Plus, how would you present your friends with a mix? I’m still holding on to the greeting card, and I’m going to hang on to the mix CD, too. (Though I did get a book in the mail the other day that was published in 1931 and when I opened it I was reminded of the scene in the book Super Sad True Love Story where the protagonist gets yelled at on a plane for opening a stinky, musty book.)

This weekend I sat down at the (still somewhat functional) laptop and made a mix. Nothing fancy, it’s just songs I heard and liked. Some are really cheesy, and not even ironic Hall & Oates cheesy, but, rather, rock-out-in-traffic-with-no-one-else-in-the-car cheesy. Someone asked me for the list, so I tried cutting and pasting it from iTunes to WordPress, but even that eluded me. I think this is pretty close, though. If you want a copy, let me know and I’ll burn you one.

But you have to promise to make a mix, too.

Please pardon the dust! Girl in a Party Hat is sprucing up a bit — mostly on the technical side, I’ve decided to join the 21st century with an email subscription method and a couple others bells/whistles. It should all be ready to go soon. For now we’re Girl in a Party Hard Hat.

I got up too early yesterday morning. Stumbling around the kitchen, making coffee, I noticed something on the windowsill above the sink that gave me pause. Two terrarium refugees (because, as it turns out, I can’t even keep succulents alive) were watching me and while the plastic toys had been there for a while, they suddenly reminded me of something. Rather, two someones.

The little bunny is endearing, loving, snuggled up against the side of the big bunny. You can almost hear it sigh with happiness, just for the proximity. The big bunny is stoic, hands (paws? what do bunnies have?) together, mouth pursed. Slightly pissed, perhaps. Definitely disengaged.

Sophie and me.

It’s not entirely true, of course. There are plenty of times when I’m the one looking for a cuddle, encouraging interaction, and even more when Sophie’s a stinker — hardly a snuggly bunny. But, you know, stereotypes exist for a reason. I know the stereotype when it comes to Sophie; I don’t want to think about where I fit into that scenario.

In any case, it was a good day to notice the bunnies on the windowsill, as it’s Fall Break this week and Sophie and I were set to spend most of the day together. It was a particularly good day, as it turns out, and it could be a coincidence or maybe I just planned our activities well, but I also think I was an iota or two more patient, more present than I usually am — and for that I thank the bunnies.

The day began with a play date (bonus: I love the mom of the kid) at our house, then we headed to lunch and the requisite Fall Break trip to the indie bookstore, where I let Sophie buy three books. Typically I limit it to one and typically no matter what the limit (or extravagance) it’s impossible to get her out of this place (I love it too) but the visit ended happily, no tantrum. We spent some extra time in the “drama” section, since Sophie’s really into scripts these days. After rejecting “Lost in Yonkers” by Neil Simon (she already owns — and often reads aloud from — “Brighton Beach Memories”) she choose “Our Town” and let me suggest “The Miracle Worker.”

When she asked (about a dozen times) what “The Miracle Worker” is about, I answered, “a girl who can’t see or hear” (about a dozen times) instead of getting exasperated and announcing, “Don’t ask questions when you already know the answer!” after the first few times. When I announced she could only buy one item at the used kids clothing store, she agreed, and we were both pleased with the sleeveless purple velvet dress trimmed in pom poms for $4.

The trip to Trader Joe’s was without incident — and that never happens. We went home and made brownies together. “Get the big green mixing bowl out of the drawer,” I told Sophie. She did, and when she noticed it was dirty (don’t judge, I don’t think there was actually food in it or anything like that) Sophie climbed on her step stool at the kitchen sink, picked up a sponge, and cleaned the bowl herself.

I’m not saying it was all sunshine and roses. I can barely make a sound in the car without my precious daughter screaming, “DON’T HUM!” and singing is out of the question. She almost went AWOL during lunch and I might have yelled once or twice during the play date. But it was a good day, a really good day. I think I’ll keep those bunnies there for a while.

As I might have mentioned earlier, I am not a big fan of National (fill in the blank) Day/Month/Year/Moment.

This might be because as a journalist (particularly one who edits a food blog) I find myself bombarded constantly with PR requests to cover National Margarita Day by writing about a client’s tequila or to celebrate Breast Cancer Awareness Month by publishing photos of a company’s pink-ribboned cupcakes. It’s fake, created, ridiculous and often done for the wrong reasons.

That said, I get that it’s good to remind people. (Not about tequila, I don’t seem to forget about that.) As I’m fond of saying, in my house every day is Down syndrome awareness day. Perhaps not in yours. And so I’m not going to bag on the “31 for 21″ campaign, which encourages Down syndrome bloggers to write every day in October, which does in fact happen to be Down syndrome Awareness Month.

I’m also not going to promise to blog 31 days in a row this month. But I’ll do one better: I’ll introduce you to five of my favorite bloggers, all of whom happen to write about Down syndrome on a regular basis. I have to admit that since starting Girl in a Party Hat more than five years ago, I’ve fallen behind in my writing but even more in my reading — I don’t keep up with other blogs the way I once did. (No one has enough time for everything these days, do we?) But here are five you should know about, for when you have a few free moments. Some of these bloggers are doing “31 for 21,” others aren’t. They are all beautiful writers who have taught me a lot. Enjoy.

Everything Happens for a Reason by Maya Kukes

To say Maya is a kindred spirit doesn’t begin to describe it. From taste in graduate schools to taste in crappy movies, we have a lot more in common than the fact that our kids have Down syndrome. Finding Maya was a huge relief — and a joy — in a lot of ways.

When the house lights went down, Leo took my arm for a minute, not sure what to expect, I suppose. When the show started, and the actors began speaking (and there were puppets!), Leo crossed his legs, leaned forward, and was instantly hooked.

Aside from laughing and clapping at all the right places, the only sound Leo made was when the first web with the words “Some Pig” appeared. “Some pig!” he announced, decidedly not whispering. He leaned over to the unsuspecting man next to him, pointed at the web and said “Some pig!” The patient man (a dad) caught my eye and smiled at me, and then Leo. I drew the line when Leo crouched down and attempted to tap on the shoulder of the woman in front of us (he apparently wanted to tell her about “Some Pig!” too.

Unlike “Some Pig,” Leo couldn’t read “Radiant” or “Humble,” the next words to appear on Charlotte’s Web. I assure you that when he leaned over to ask me “What’s that say?” he immediately attempted to tell Dad Next To Us about Radiant and Humble. Luckily, patience mostly abounded that day and Leo’s neighbor indulged him with a sweet nod. Read more.

My Name is Sarah by Sarah (and Joyce) Ely

This is a very special blog, written by Sarah, who is a young woman with Down syndrome. Her blog has given me a window into what Sophie’s life can be like; it’s an incredible gift.

This is Joyce. [Sarah's mom] We frequently get questions wondering how Sarah blogs. So we decided to show you. Although internet blogging has only been around for a few years, Sarah and I have really been engaging in the same process since 1995 or so. It was just more primitive, ie: photos, paper, three ring binders… Read more.

Ordinary Afters…. by Nicole Hines Starkey

I follow Nicole and her husband on Facebook and she and I are both big Instagrammers, so some days I feel like I know her family better than those I’ve actually met. Her writing is lovely.

She turns and runs to the pantry grabbing one of the set of pint-sized aprons we keep on hand for cooking. She hands it back up to me and turns her back waiting, knowing that I will tie it in a gentle bow and acquiesce to her request. I lean down and kiss her strawberry locks and hand over the rainbow whisk that she loves to “cook” with. There may not be time to make actual muffins. But certainly there is time for the even better make-believe ones. Because I can see it. I can see her mind and many of its facets so much more clearly now than I could a few short years ago. I can see when she is pretending and when she is serious. When she is ready to learn and when she is ready to teach. When she is ready to work and when she is ready to play. Read more.

*Results Not Typical by Chrystal Smith

Rum cake is her kryptonite — but otherwise I don’t think there’s anything that can stop this woman.

They came into my room when she was twelve hours old, before I could even see the symptoms on my own, before I had the opportunity to get to know her, before I had the chance to build up my defenses.

They looked at her and told me what they suspected. They wanted to take her blood. They needed proof of what they already knew and what it would take me quite some time to accept.

I consented, if only to show them how wrong they truly were. They may have been smart, but I had it on good authority that I had done everything right. I knew that my times of struggle were over. I knew that it was my turn to be happy. I knew this couldn’t be my destiny. Read more.

Unringing the Bell by Tricia Theis Rogalski

Ah, Tricia. Another friend I’ve never met, but I know her comings and goings — in a good way.

Georgia…well…Georgia insists. She goes through phases, wears things OUT with the phases, learns songs inside and out, tv dialogue inside and out, entire dance sequences INSIDE AND OUT, and then, finds a new obsession. Then, after a few weeks or months, when you happen to put one of the old obsessions in the player, she is typically delighted. So delighted she falls in love all over again. Annnnnd repeat. (Although, eventually, much to our delight, some things just fall our of rotation entirely. For instance, she doesn’t tolerate much Sesame Street anymore.)

She’s very…let’s say routine-based…in life in general. She used to yell out whenever we went a different route home and get very upset. If I ever have to make a pit stop and she thinks we’re going home I sure as shootin’ better announce it…preferably a number of times from the moment we get in the car. “Georgia, first we’re going to the grocery store, THEN, we’re going home.”

First, Then, First, Then, First, Then. Story of my life. Read more.

Mine, too, Tricia. Mine, too.

When Sophie announced that each of the kids in her fifth grade class had been invited to attend parent/teacher conferences this fall, I knew we wouldn’t get much done at the meeting. She was so excited about this morning’s conference that I only had to remind her a half dozen times to get dressed, and she accepted the first outfit I selected, which never happens. She didn’t insist we go to IHOP for breakfast and yelled at me to skip a shower (don’t worry, I didn’t take her advice) then hustled us out the door, her backpack almost as tall as she is.

I resist these rituals, the easily managed measures parents take to ensure the success and safety of their typical kids. It’s why I hate curriculum night and meet the teacher day, all reminders of how it’s supposed to be done, a not-so-happy by-product of life in the mainstream. You’re supposed to dispense of all concerns and issues surrounding your child in a 15 minute conversation with the classroom teacher. In our case, the aide and the resource teacher were there, as well, and we didn’t scratch the surface — and that wasn’t only because Sophie interrupted every 30 seconds or so.

“Watch this everyone!” she said, pecking me on the lips. “Just Mommy, not Santa!” (We’ve been over this a thousand times, narrowing down the list of people Sophie’s allowed to kiss to one — me.) Long after our allotted time was over, Sophie was still struggling to pull her chair from the top of her desk to show me her daily ritual. I winced; the other adults looked on peacefully, infinitely patient — on the outside, anyway.

I smiled and nodded and offered to come and make sugar skulls with the kids for Halloween, because really, what else can I do? Sophie has now fallen below grade level  in reading, right on schedule. Her report card says “B” for math — but that’s Sophie math. We’re going to have to hire a tutor just to help her figure out the concept of money, in spite of the efforts made at school.

As usual, Ray’s the realist. “Look at her scores,” he said this morning before school, going over the numbers on the standardized math and reading tests. “This isn’t so bad.”

“Do you need help in math?” I asked, exasperated.

“Look,” he said. “Sophie still gets 2 plus 3 mixed up sometimes. But her vocabulary is great and she puts sentences and concepts together. Who cares about the tests?”

He’s right, he’s right, I know he’s right. And next time I might make him sit through the parent/teacher conference.

For her part, Sophie was thrilled. In the stack of papers I brought home was her self-assessment her teacher had each of the kids fill out. I thought about it, driving to work. Sophie feels like she’s doing really well in all of her subjects. How would my life look if I felt that good about myself? Here’s how it looks now:

AMY’S SELF-REPORT CARD

In work I feel I did: Very Well * Well * Not as Well as I Could Have Done

In housekeeping I feel I did Very Well * Well * Not as Well as I Could Have Done

In spending quality time with my husband I feel I did Very Well * Well * Not as Well as I Could Have Done

In remembering friends’ birthdays even with the aid of Facebook I feel I did Very Well * Well * Not as Well as I Could Have Done

In diet/exercise I feel I did Very Well * Well * Not as Well as I Could Have Done

In parenting I feel I did Very Well * Well * Not as Well as I Could Have Done * Hey, You Look at Sophie’s Test Scores and Tell Me

In procrastinating by obsessively re-organizing craft supplies I’ll never use I feel I did Very Well * Well * Not as Well as I Could Have Done

I’ll end on a high note. You get the picture.

I called my mother early yesterday morning to report that I’d solved the problem of where to send Sophie for junior high.

“OK, here’s what we have to do. Get Chuck Coughlin’s wife pregnant. She’s older — maybe she’ll have a baby with Down syndrome. Then he’ll solve the problem.”

If you’re lucky enough to live outside Arizona, you need to know that Coughlin is a long time political consultant here, or as I like to (not very kindly) call him,”the fixer.” Yes, it appears that a woman named Jan Brewer is the governor of Arizona, but inevitably, when it comes to her biggest of decisions (SB 1070, the anti-immigrant law; or Medicaid expansion) this man takes over. And let’s just say that if he believes his motives are altruistic, others (me! me!) beg to differ.

In any case, he gets the job done.

I’ve long believed that if someone could just convince Chuck Coughlin that it was in his best interest to do away with Maricopa County Sheriff Joe Arpaio — poof! That creep would be gone. Alas, Coughlin probably thinks Arpaio is swell. Or that his friends are, anyway.

It’s a gross state, and so it should come as no surprise that the education system here is not ready for Sophie’s junior high years. And short of a surprise DS baby, I don’t see Chuck Coughlin coming to my rescue. I’m on my own.

Literally. Last week I asked the Facebook gods for help. Want a good handyman in the East Valley? Places to eat on the Big Island? Ideas for a Halloween costume? Facebook’s never let me down. But when I asked, “Say you have a child with Down syndrome. Where would you send her for sixth grade in metro Phoenix?”

Crickets.

I knew before I asked. Because here’s how the system works.

You can send your kid to the public school in your neighborhood, accepting whatever services (or lack thereof), philosophy and physical conditions it offers. Or, pretty much, you can eat dirt.

We had an okay junior high down the street from our house. It closed a couple years ago due to declining enrollment, opening back up again this year — with an International Baccalaureate program. So that’s out. The now-designated feeder junior high school for Sophie’s elementary school is trying to improve its crappy reputation — with a new gifted program. So that’s out, too.

At least, it’s probably out. I’ll have to consider the feeder junior high because it’s really our only viable option. And in the end, it might work out fine. But that makes me mad, because with Annabelle, when it came to junior high I had more options than I could consider. Why isn’t there the same for Sophie?

I know why: money.

Open enrollment at public schools? Yes, for Annabelle. For Sophie? Not so much. Each school can cap the number of kids with IEPs it takes, because a kid with an IEP is more expensive to educate. So if I want to get Sophie into a school in, say, Scottsdale, I have to find one with a spot. And if it’s a decent school, the chances, I’m told, are pretty low.

In all of metro Phoenix, I’ve (so far) found just one charter school that might take Sophie. Yes, legally, charters are public and “must” take any kid (lotteries aside). But that’s not how it works in real life. In real life, charter schools get fewer resources for special education than public schools (don’t ask me how this works — I’m still trying to figure it out).

And even if you had unlimited personal resources for a private school, there isn’t a good one for a high functioning kid with Down syndrome. Or if there is, it’s tucked away pretty tight, because I’ve been looking for two years.

We should probably just move to New Jersey.

My mom was not particularly amused with my Chuck Coughlin solution. I admit it’s not the kindest thought I’ve ever had. Plus, she added,  “I thought you’d really figured it out.”

I will. Eventually. I just hope Sophie’s not in college by then.

More and more, these days, I find myself thinking about salad. Not that kind of salad. I’m actually about to make a meatloaf this evening.

The Salad Days. I’ve written about them several times before — prematurely, sort of like how I decided to have my midlife crisis at 38.

But now they are upon us, these goddamned Salad Days. The puberty specialist said as much. In no uncertain terms, at last week’s seminar, she made it clear that once the kids hit junior high, the typical kids don’t want to hang out with them. At all.

I was surprised by how insistent she was, how matter-of-fact. Find your sons and daughters other disabled kids to hang out with, she said.

Yeah, okay, I’ll put that on the “to do” list alongside visiting the orthodontist and finding a good school: Disabled friends.

My down to earth husband wasn’t phased when it came up at the puberty workshop.

“I’ve been telling you that forever,” Ray said afterward. It’s true. He warns me often that these are the best days, the days Sophie’s considered cute — and not a pain in the butt. The days when she can just about keep up, when she still has friends.

Not a ton of friends, no, and of course I see the differences between Sophie and her peers, I see them more and more. I know it’s coming. I just couldn’t believe that woman said it, like ripping off a BandAid. I guess she figured it was better coming from her, that she was doing everyone in the room a favor. But now I’m on the lookout for it. Even more than I was already.

Last Friday night, I dropped Sophie off for a sleepover at her best friend Sarah’s house, and standing there, waiting for someone to answer the door, tortured myself by imagining a day when Sarah has other plans.

The door opened and Sophie slipped inside, happy to see her “B,” as the two say. (Shortened from BFF.) Sarah was all smiles, too. I sighed as I closed the door behind me and drove away.