The other day Sophie, Ray and I went for a walk. Sophie walked between us, and one point reached out and grabbed each of our hands.

“Will we go for walks like this our whole lives?” I asked, saying it as much to myself as to Sophie.

“No,” she said matter-of-factly. “I’ll go for walks with my husband and our kids and our dogs.”

“Sounds good to me,” I said, smiling over her head at Ray. Hey, it could happen. “So who will you marry, Sophie?”

“Niall from One Direction,” she said a little impatiently. (We’ve been over this before.)

“So you don’t want to marry someone with Down syndrome?”

“Yes, if Niall from One Direction has Down syndrome.”

Got it. Sophie’s hot and cold on the DS thing. Sometimes she’ll see a person at the mall she thinks has it (this becomes awkward when the person does not) and want to approach them to ask. She has a couple girl crushes at Special Olympics. And she adored the leads in Detour Theater Company’s production of “Hairspray” a few months ago. (Detour is our local theater company for adults with developmental disabilities.)

Still, I was surprised when she announced who she wanted to be for the fifth grade wax museum. Every year, each fifth grader at Sophie’s school chooses a character to portray. I believe it’s supposed to be a historical figure, but apparently it’s good enough if it’s a real person, because Sophie came home yesterday ready to research Lauren Potter.

I didn’t recognize the name right away either. Lauren Potter plays Becky, the character on the popular (and somewhat inappropriate) television show Glee.

“Why do you want to be her?” I asked Sophie.

“Because she’s Down syndrome and she’s a cheerleader!”

“Has Down syndrome,” I said under my breath.

I asked about two of Sophie’s best girlfriends. One is going to be Anne Frank; the other, Justin Bieber.

Did you know that there’s a special Wikipedia-like Glee web site? There is. I now know that Lauren Potter’s favorite color is red and her favorite book is Twilight.

“She wears glasses like me and likes spicy food — just like Daddy!” Sophie announced this morning, carefully going through the several-page entry.

I bought the costume on eBay; later we’ll get a presentation board and put together details of Potter’s life. Much of her resume details her advocacy work. I bet she’d be pleased that Sophie wants to portray her. Or would she be?

“Look!” Sophie said, pointing to Lauren Potter’s photo. “We look alike!”

Yes — and no. For so long, I’ve wanted to Sophie to be comfortable having Down syndrome, to relate to others with it. Now she shows a sign that she is, and it makes me feel uneasy, like she’s settling, ready to be typecast. Why can’t she dream about marrying Niall? When I was her age, I wanted to marry Shaun Cassidy (okay, I might have been a little younger) and I didn’t have to worry about his genetic make-up.

As usual, I need to get over myself.

Unlike a museum, our world is full of moving parts. A work in progress. Nothing is set in stone — or wax.

one day me and my grandma are going to the mall and we got lunch and then we went shopping for cloths  and then we  went to  h and m and  then we bumped into  Sarah and her mom i said that can i sleep over  together and we went out for dinner we got sushi  and we loved it so much and we went  to back other house and we go to  see my old friend  her name is Mackenzie   and she  haves a bull dog it was awesome time and we went to   see aldc  and we saw all of the people  there i saw the girl   and wen to to the  studio   i was the best there we  went to  the stage i dance with  the  girl”s  it was awesome  we won Abbie  was  proud of us we got 1000 place  we got diner together and then we all went to  bed in the same bed  but the grown  ups did not sleep in the bed   they never see me ever and the  i lived there

And the edited version:

One day my grandma and I went to the mall and we got lunch and then we went shopping for clothes and then we went to H & M. And then we bumped into Sarah and her mom. I asked if we could have a sleepover together and we went out for dinner. We got sushi. And we loved it so much and we went to another house to see my old friend. Her name is Mackenzie. And she has a bulldog. It was an awesome time and we went to see the Abby Lee Dance Company. We saw all of the people there. I saw the girl and went to the studio. I was the best there. We went to the stage, I danced with the girls. It was awesome. We won. Abby was proud of us, we got 1000 place. We got dinner together and then we all went to bed in the same bed but the grown ups did not sleep in the bed. They never see me ever, and I lived there.

This morning Sophie stumbled into the kitchen and announced — half awake but smiling — that there are only four more Mondays left in the school year.

I looked at the clock and I wanted to cry.

Not only because of my worries about junior high, and my mushy feelings about her current school — both well-documented (ad nauseum, perhaps) here on Girl in a Party Hat. It’s because I’m feeling sentimental about our mornings together.

Most weekdays, someone’s alarm goes off a few minutes before 6, or I roll over a little later and holler at everyone to get up. Everyone but Sophie. While Annabelle’s carpool leaves at 7, Sophie doesn’t have to be out of the house till 8:45. School is a few blocks away, and unless it’s a really difficult morning, we’ve perfected the art of the quick drop-off. The last bell rings at 9.

This morning, when I glanced at the time, it was still just 6:40. Two full hours till we had to be anywhere. Plenty of time to relax over coffee (me) and cinnamon toast (Sophie), even accounting for the arrival of the physical therapist at 8 — which gives me a full half hour to get ready by myself (no one talking to me while I shower — heaven!). Time for a few rounds of Go Fish, several wardrobe changes, an episode of Peppa Pig, even time to write a blog post. (And some mornings, let’s be honest, time to head back to bed for a while.)

And time to make brownies. I don’t always indulge such a messy request, but when Sophie asked this morning, I didn’t hesitate. She got out the bowl and the scissors, read the directions on the box, stirred in the yogurt, and we had a teaching moment over the fact that you lick the spoon after you’ve filled the pan with batter, not before.

Sure, it’s the kind of thing we could do at night, but we never do. We’re both too tired by then. Right now the day is young, the air is cool, and I’m not quite ready to fall onto the couch and close my eyes. Ray and I split the after-school duties, but even with work time at a premium, over the years I’ve started kicking him out the door in the morning, in favor of alone time with Sophie. (He does grab a few mornings, too, and I know he loves them.) Soon, that will end and we’ll all be out of the house by 7.

As I write this, Sophie is sitting on the floor in front of the oven, waiting for the brownies. In a few minutes, they’ll come out with plenty of time to cool before we cut them for her lunch box.

A luxury I’m trying not to take for granted.

Sophie spent the weekend disappointed. It began Friday afternoon, when I wouldn’t let her participate in Annabelle’s ballet class. I tried to make it up to her — literally. In the cosmetics section of Walgreens.

“I need dark eyeliner,” she told a helpful clerk. “I’m doing a dramatic dance.”

The clerk looked at me. I shrugged. “Let’s stick to Wet and Wild,” she said to Sophie, then stage-whispered to me, “It’s the cheapest.”

We left with a bag full of everything but mascara — I figured I was erring on the side of caution. While Annabelle finished class, Sophie occupied herself with filling a new cosmetic case with her treasures: the eyeliner, blush, pressed powder, hair ties, a brush and a really dark lipstick.

The next morning, both girls had dance class; Annabelle helped Sophie get ready, which included switching her leotard from back to front (thus avoiding an awkward Elaine Christmas card moment, a la Seinfeld) and carefully applying small amounts of makeup.

Sophie was thrilled. The joy was short lived.

That afternoon, Annabelle had rehearsal for a show. “I’m going, too!” Sophie announced as we neared the stage door. “I’m doing a dramatic dance! I’m dancing on the stage!”

Up to then I had thought the dramatic dance was a kitchen floor sort of thing, maybe the living room. But no, Sophie figured that if Annabelle could perform onstage so could she — and no reasonable explanations, or reminders of how often she does get to perform or even chocolate ice cream could dissuade her. She sobbed. Luckily, the rehearsal didn’t last long.

She was still out of sorts Sunday morning, as we all got ready to go to the show, but she quieted down in the car. A lot. I didn’t notice, because I was on the phone, on hold with Red Robin as I desperately waited to hear whether they’d located the debit card I was sure I’d left there the previous night. “I have a huge stack,” the manager said. “Hold on.” (A huge stack? Who doesn’t come back for a debit card?)

“Hey mom, have you looked at Sophie’s makeup?” Annabelle asked, extra-sweetly, from the passenger seat.

“No, I can’t turn around and look right now, I’m trying to drive!” I said. Several times. Sophie was still quiet. Finally the Red Robin manager came back on the line; yes, they had it, yes I could pick it up later. We dropped Annabelle at the stage door and pulled into the parking garage of the theater.

“OK! Now I’m dying to see your — oh, boy. Wow!”

No words. Sophie had large amounts of Wet and Wild’s Black Orchid smeared all over her lips. And mouth. Up her cheek, on her hands, all over her pale green shirt. She was grinning.

Wasn’t there a scene like that in one of Judy Blume’s books with Fudge? But wasn’t Fudge a toddler?

I smiled. “You look beautiful!” I said. “We might need to wipe a tiny bit of that off in the bathroom, okay?”

“Okay!” Sophie said, grabbing her purse — a miniature shoulder bag my mother in law would have called a “pock-a-book”) from the backseat. The purse was suspiciously full.

“Um, can we leave some of the stuff in your purse in the car?”

“NO!”

One battle at a time.

“You know,” I said as we walked to pick up our tickets, “here’s the thing about performing. Sometimes you are the person on stage, but sometimes you are the performer, because otherwise there’d be no one to wa –”

“I don’t want to talk about it,” Sophie said curtly.

I don’t think she was very pleased when she saw herself in the mirror, or when another mom asked if she’d just eaten a purple popsicle, but she wiped herself down (refusing my help) and we went to the show. Once we were seated, I caught a peek at the inside of her purse. I wasn’t taking notes, but I am pretty sure I saw: two Eos lip glosses, three small bottles of scented body lotion, a bottle of shower gel, a stick of deodorant, several paintbrushes (Sophie collects them) and the aforementioned lipstick, which I swiped and put in my own purse.

Sophie held the purse on her lap and as the lights went down I saw her offer some scented lotion to the woman next to her. That was okay. It wasn’t a super fancy production, a black box on a Sunday afternoon with lots of family members in the audience. But when I peered through the darkness and noticed Sophie reaching under her tee shirt, I had to work hard not to laugh out loud — and in horror.

“Are you, um, are you putting on deodorant in the theater?” I hissed.

“I don’t want to smell!” Sophie whispered back, switching pits.

I confiscated the purse. The show ended, we got Annabelle and headed home, with me resolving to figure out a different solution for this kind of situation.

I figured Sophie’s bad mood would lift — and it did. But not the make up. This morning Sophie emerged from the bathroom dressed (good) and covered in blush (bad). It took both Annabelle and me to convince her that dark stripes of hot pink are not the in look. After a thorough wipe-down and 20 minutes in the bathroom by herself fixing her hair (resulting in three pigtails — so much for showing off the cute new haircut) Sophie was off to school, without any of her makeup.

I think.

This morning Sophie burst through the kitchen door — fresh from a shower, wrapped in a towel — and announced, “I look like a full-grown woman!”

I smiled. Adorable? Yes. Full-grown woman? Hardly. True, she didn’t have the towel draped over her shoulders like a little kid, but at 43 inches and 54 pounds, dripping wet, my fifth grader still gets confused with the kindergarteners at her elementary school.

That’s okay with me. I prefer it to what’s coming next year in junior high. i picture a herd of giant tweens and teens barreling down the hallways of the new school, trampling little Sophie without even realizing it.

She has no idea what’s coming. And for all I know, instead she’ll emerge victorious — held aloft on the shoulders of members of the JV football team, crowd surfed through middle school.

Most likely it’ll be something in between.

One thing I can pretty much guarantee: I’ll always get a hug after school. One of our beloved nannies is out of town this week, so Ray picked Sophie up from school yesterday. This morning (still in PJs, pre-shower/towel) she jumped into his arms and he recalled how good it made him feel to have Sophie run across the school yard to him yesterday, so excited to see her dad. Sophie’s aide told Ray she’d talked about it all day. This afternoon it’ll be my turn. I can’t wait.

You can’t always take it for granted that a kid will offer physical affection in public. I know that. It’s been many years, but I still recall clearly a day when Annabelle was 7. We were walking up to school and I asked shyly if I could hold her hand. She said yes. “Oh Annabelle, how much longer will you let me do that?” I asked. “I don’t know,” she replied, looking a little shy herself.

A long time, as it turns out. Annabelle still takes my hand at the mall, still leans in for a hug in public. (Not always — she is on the verge of 13, after all. The hormones are beginning to simmer.) Every time I feel that small, soft hand slip into mine, it makes me think I’ve done something right as a mom.

Annabelle is affectionate — but subtly, appropriately so. Sophie’s desire to be a grown-up does not extend to public displays of affection. I know that this afternoon she’ll get a running start and leap into my arms as though we haven’t seen each other in years. I’d say she’ll make a scene, but everyone in the school yard knows her so well, they won’t give it more than a passing smile.

Junior high won’t be that way.

Should I start training Sophie now to tone it down? This afternoon, should I stop her short, give her a quick pat, quiet her when she shrieks, “MOMMY!”?

Maybe I should. But I won’t. Not today. We still have a few months. In any case, for all I know, I’ll go to pick Sophie up on that first day of junior high and she’ll greet me calmly — no hug, no squeals, just another cool sixth grader.

Maybe. But probably not. And that’s more okay with me than I want to admit.

Saturday was the state Special Olympics cheerleading competition. Sophie’s team bombed. They finished third out of three, winning bronze medals. I found Sophie’s crumbled on the not very clean porch windowsill the next day. No one had even bothered to bring it into the house.

A rather sad end to the season, in contrast with last year, when Team Tempe came from behind to tie for the gold.

Here’s the thing, though. Sophie’s team bombed — but they also completely and totally kicked ass. They had great music, great choreography, they knew their moves. The crowd loved them. Sophie had a blast onstage, smiling, shaking her pom poms and her hips, staying on the beat and, of course, doing the splits (three times!) at the end of the routine. (When Ray gets a video made, I’ll post it.)

The competition was tough. In order to dance and cheer (as opposed to just cheer), a team has to enter the “advanced” category. And Tempe was pitted this year against two very good teams. So yes, technically they bombed and kicked butt at the same time. And honestly, I don’t think the team would have performed as well if they hadn’t been pushed so hard to compete. I love Sophie’s coach for making the decision to enter them in the harder spot.

It was one of those rare and beautiful moments when your kid is pushed to her limits under all the right circumstances, in a place where it’s safe to fail. In a place where it’s understood that even though every participant has “special needs,” someone will fail. A soft landing, a medal, but still, last place.

I sat in the audience as the bronze medal was announced, and thought about science.

Last week I learned something I am kicking myself over for not figuring out way sooner. What I’ve been able to piece together so far is that Sophie’s gotten little to no science and social studies instruction all year — and what she has received has not been modified, meaning it’s way too hard for her. Because of a scheduling snafu, instead of being pulled out of regular math and language arts for “resource” help, that’s been happening during science and social studies, the rare times Sophie is supposed to be learning alongside her typical peers.

Long story short: the work in science and social studies is too hard, and Sophie’s not in class (much if at all) to learn it.

I’m sure I’ll write more about this as I learn more (I have meetings pending with the special education teacher and principal) but one thing I’ve learned disturbs me most of all. Sophie was given a C in social studies and one in science, and word on the street is that this is because someone at the school has been trained to “never give a special needs student a failing grade.”

That could be because it’s expensive and inconvenient to educate a special needs kid. The idea generally is to resist holding such kids back a grade — just move them along, let them socialize with their peers. It could also be because it’s easier to give a special needs kid a C than disappoint either her or her parents. Ds and Fs raise more questions than Cs.

I am not a fan of either reason. I sat and stewed during the rest of that medal ceremony and it wasn’t because Team Tempe lost. It was because when you throw that up against what has obviously happened at school — and a school where everyone loves Sophie; where a lawyer fine-tooth-combs her IEP and attends all the meetings; where I like to think I’m on top of every little thing — almost an entire year can go by where no one’s offering your kid (and others, this seems to apply to at least two if not a whole gaggle of fifth graders and perhaps beyond) two of the main subjects taught at the school.

I blame myself. I should have figured it out. But I didn’t. No one did, until last week. Now there will be lots of meetings, carefully worded apologies (since all of this may or may not be illegal). They’ve already sent home science and social studies vocabulary words for Sophie to study for an upcoming test. For the most part, I’ve learned that people aren’t cruel; they are just not well trained for their jobs, and when Sophie’s part of the job, there’s a greater chance of mishap since it’s so relatively rare for a kid with Down syndrome to come along and require so many adjustments. And Sophie does require a lot. I get that. I feel guilty about it. But Sophie deserves an equal education.

And if the classwork is modified and taught to Sophie and she studies and takes a test and fails — she deserves an F.

The phone just rang, and I held my breath.

Ms. X is the only person in my phone with the “xylophone” ring tone, and even though Sophie’s been out of kindergarten for five years, and Ms. X has become a dear friend — meaning the call could have as easily been about margaritas as a skinned knee (or worse) — I still instantly go directly to, “Oh shit, what happened!?” in a heartbeat when I hear that ring tone.

Turns out, she was calling to see what time Sophie’s Special Olympics cheerleading competition is tomorrow, because Ms. X is the kind of person who will drop everything on a Saturday morning to drive across town to see one of her kids perform.

I love her. And so does Sophie. Barely a school day has gone by in the last six years that Sophie hasn’t gotten a cuddle from Ms. X, lotion on her chapped skin, a quick chat or a longer one. Ms. X is her touchstone.

After we’d talked schedules and directions, Ms. X remarked that she’d seen Sophie this morning — and it hadn’t gone well. Today was the kindergarten rodeo, a big deal at Sophie’s school. Every year each kindergartener paints a hat (see photo above of Sophie painting hers, many moons ago), makes a horse and spends a Friday morning playing games outdoors. Then they don the hats and “ride” the horses through each classroom in a parade.

When Ms. X arrived at Sophie’s classroom, she gave her an extra big hug and announced, “Hey, it’s your last rodeo!”

At which point Sophie opened her mouth and, as Ms. X put it sadly, “began to wail.” Totally inconsolable.

We talk about junior high a lot at home. Sophie knows she’s going, knows she’s leaving. She’s excited.  In the abstract.

Today, we think, it got real for the first time.

“She wanted to know if I’ll come visit her at her new school,” Ms. X said.

The answer, of course, was yes.

Hi my name is Sophie and today I will talk to you guys about my birthday. Can you give me ideas for songs for my 11th birthday mix? And hope you love my post. And also me and my mom got some song ideas together, like Party in the USA and we are thinking about having a spa night at the hotel and we stay up and talk about boys and then we are doing a dance. The first thing we do is a leap and a turn and we run, passé passé and we run in the middle of the stage and we go up down, up down, run, leap and then we leap and another one and we are finished with that.

Sophie asked me to edit the post, so I did. But I prefer her unedited version: 

hi my name is Sophie  i will talk to you gycs  about my  birthday  can you get me  any ids  for sings for my 11 th birthday mix  and  hope you love my post   and also me and my mom got some  together  happy   party  in the isa  and  we are thinking  about to have a spa night at the  hotel and we stay up and talk about boys   and then we   are   doing a dance  the first think we do is a leap  and a turn  and we run   possay possay   and we  do run in the middle  of stage  and we      up down uptown  run leap  and then we leap   and a  other one  and we are finnsithsed with  i will come back and typing

See also: “Fabulous Sophie” Writes a Guest Post

Not long ago, Annabelle created her very own superhero.

It was for a school assignment — the big assignment of the year, in fact, the Third Quarter Presentation, a term uttered with dread by most every student at her school.

I love Third Quarter Presentations. From fifth grade on, each student is required to stand in front of two teachers and sundry family members and give a several (at least) minute rehearsed speech defending a pretty complicated topic, with just a few notes on a tri-fold board as prompts.

Fifth grade was history, last year was science, and this year, in seventh grade, Annabelle was asked to make a social justice connection to an existing superhero and then create her own.

Cool, right? She chose the Falcon and tied him to the Civil Rights Movement, researching MLK and Rosa Parks, as well as looking up current statistics that still separate African Americans and whites when it comes to pay and education. She did a nice job, but my favorite part was her own superhero, whom she named Equalitis.

Equalitis, as Annabelle explained, comes from a planet inhabited by both monsters and aliens, warring factions. Equalitis (rhymes with fetus) is of mixed descent — one parent a monster, the other an alien. As such, she is looked down upon by all, estranged from society on her planet, miserable and alone — until a particular point in time that corresponds with the delivery of Martin Luther King’s “I Have A Dream” speech. At that moment, she receives her superpowers.

She has the ability to hear and even more important, the ability to change others’ mindsets. Not “mind,” as Annabelle explained during her presentation, but “mindset.”

During the presentation, I watched Annabelle, of course, but also stole glimpses of the faces of her social studies teacher, my mom and Ray. All three were obviously exploding with pride. My mother, who once taught political science to junior high students, wiped her eyes a few times.

I wished Sophie had been there, too. Originally, Annabelle had asked that Sophie come along — she thinks her social studies teacher would really love to meet her little sister, and having met him, I agree. But Ray and I worried that Sophie would not be able to sit still (and more important, keep quiet) for 12 whole minutes. This was Annabelle’s show. We didn’t need Sophie getting up in the middle to do the splits or announce that the girls are getting ready to switch bedrooms.

But Sophie did hear Annabelle’s presentation a few times as her sister practiced. She sat at the dinner table a few days before Annabelle was due to deliver the final version, and listened, while Annabelle talked and my dad scarfed the dessert I’d made him for his birthday.

Annabelle talked about how Equalitis had the ability to hear what African American and gay people were thinking, and to help people on her planet understand one another better.

Afterward, it was time for questions and comments.

“That was a five cookie presentation!” my dad remarked. (About as close as he gets to a compliment — on either presentations or baking.)

Turns out, it was Sophie who had the sharp response.

“Does she listen to Down syndrome people?” Sophie asked.

Crickets. We all looked at each other, not sure what to say.

“She does!” Annabelle announced.

(And then Sophie got up and stood next to Annabelle, hugged her, and announced to us all that this was her sister and they were, indeed, getting ready to switch bedrooms. Profound moment over.)

Two nights later, Annabelle practiced again, as Sophie and I cuddled on the couch in the living room. Annabelle described Equalitis’ upbringing, how she had a really tough time in school — that because she looked different, people thought she was unattractive and dumb.

Sophie leaned over and whispered in my ear, “That’s me.”

My eyes welled up at that painful glimpse of my younger daughter’s world. At the same time, I couldn’t have been prouder of both of my girls.

Editor’s Note: For a long time now, Sophie has wanted to start her own blog. She and I discussed it and decided that’s a lot of work, so instead she’ll do occasional posts on Girl in a Party Hat. Here’s her first. She wrote it herself start to finish — though I did offer my editing services and cleaned it up a bit. I asked her what to call it and she said, “Fabulous Sophie.” (Duh.) She illustrated it with her latest selfie, taken a few days ago.

Hi my name is Sophie I want to tell you about my family.  My uncle’s name is Uncle Jonathan. My aunt is named Aunt Jenny and my cousins are named Kate, Ben and Sam.  My family is named Annabelle and Sophie and Amy and Ray. Hope you love this blog post. My sister is babysitting me tomorrow. We are going to get our nails done together and we love it. Hope you love this blog post. We are going to Washington, D.C. and we might see Obama and we are staying in a hotel. It is called the Rouge and hope you have a good spring break and hope you love it. And me and my sister are switching rooms, that will be a lot of fun.  I was in cheer and my friend came with me.  Talk  to you  soon and you and love you bye.