Party Hat

Crackin’ Skulls

posted Thursday October 27th, 2011

I stopped at Safeway on the way to work this morning for a bag of rice — the universal sign for “Why yes, I dropped my phone in water.”

It was  a quick dip, so I’m hopeful. Also, to be honest, a little grateful. It’s been a peaceful morning.

Maybe we should all give peace a chance. Or at least slow down a little. Last night a clean-cut grandfather-looking guy in the Safeway parking lot was screaming so long and loud and with so many expletives at some college kids that I called 911. My beloved hairdresser called to say she’d given me a bad haircut the day before (I hadn’t noticed, but now I’m self-conscious) because I rushed her (which I have to admit I did). And this morning I was in such a sleep-deprived hurry I dropped my phone in a mixing bowl filled with soapy water and pumpkin bread batter.

Make it stop! I’m not sure how — I feel like Lucy in the famous chocolate factory scene.

Ray is constantly pushing me to live in the moment (this morning he gave me a collection of humor writing, saying I need some levity in my life) and yesterday I got to — for a whole 45 minutes. We decorated sugar skulls in Sophie’s class.

To be sure, getting there involved a lot of rushing — making the skulls, digging up decorations, figuring out when I could hustle out of work and back again.

But once I was in the classroom, time stopped and it was all about fuzzy pipecleaners. These sugar skulls are non-traditional — no royal icing, not much talk of dead people. It was just an excuse to slow down and make some art, something the grade school kids could use more of, as well, I know. They are drilled as hard as we are. Harder.

I was so impressed with Sophie’s class — by far the calmest, sweetest group I’ve encountered in years of classroom volunteering. I knew most of the kids, but there were a few new faces. One little girl I’ve never met came up to me halfway through, beaming, and asked, “Will you come back again?”

You bet, I told her. Wouldn’t miss it.  

She made my day.


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Party Hat

Are You There God? It’s Me, Amy

posted Monday October 24th, 2011

The other day, my mother announced that Annabelle had recently announced to her that Annabelle’s glad we don’t make her go to temple because she doesn’t believe in any of that stuff — at all — and I knew that the window had definitely shut.

Aside from a little guilt, I’m fine with that. I remember the moment in First Grade when I realized I didn’t buy any of it myself — but I held on through the Bat Mitzvah and the personalized Lucite gifts, not really sure why I was doing it. (I do mourn the lack of traditions, but we try to keep those up, as you know if you’ve read much of this blog.)

Annabelle has two committed agnostics (if there can be such a thing) for parents. Why wouldn’t she be the same?

It does mean performing without a net, this non-religious thing. And sometimes that’s easier than other times. Particularly (bitterly honest moment coming here) where Sophie is concerned. Sure, it would be nice to feel like everything was pre-ordained, that Sophie was sent from above with a message.

Some days I feel like maybe she was, maybe there is. Others, I’m just exhausted. Yesterday, out of the blue, Sophie fell into a particularly cranky mood and began both ordering me around and refusing to do what I asked, hollering, “Capisce?!”

“Which mobster movies are you letting her watch?” my sister asked. I had to admit that it was sort of adorable. More and more, Sophie’s testing the waters of sophistication — coming up with creative outfits (like the morning she lied and told Ray it was “Crazy Sock Day” at school) and renaming our friend Kathy’s cat Hot Cocoa.

It’s cute, but the subtext is increasingly troubling. Here’s an example.

The other day, she marched into the kitchen with a copy of “Are You There God? It’s Me, Margaret” and announced she was going to read and watch TV. She plopped herself at the kitchen table, grabbed the remote and, using OnDemand (which I’m not quite sure how to access myself), found an episode of Blues Clues.

It was so cute. So cute I made it my Facebook status update and joked about it all day at work. Later, it occurred to me that it’s not funny at all. Sophie made it maybe to page 2 of the book — it’s way too tough for her at this point, perhaps not the words but definitely the concepts — and really just sat and watched a show designed for toddlers.

She’s 8 now, almost 8 and a half, as she reminds me several times a day. What’s going to happen when she really does need that book, the way that I and every woman/girl I know between myself and Annabelle has needed that book? And not just to teach her about pads and belts (which are obsolete, anyhow) but to help her figure out how she’s feeling — to figure out why, as a friend with a kid Annabelle’s age said this morning, she’s suddenly acting like Sybil?

I’ll be screwed. At least I think I will, looking at it now. From today’s vantage point, it’ll be the kind of thing only a higher power can address. Too bad you can’t put “get religion” on the To Do list. I can’t, anyway.

And somehow I know that “Pink Slip” is not going to cut it.


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Party Hat

The Most Self-Indulgent Blog Post Ever Written

posted Monday October 17th, 2011

“Oh, one more thing,” I said, wrapping up a phone call with a young friend from work this afternoon. “You have GOT to go see Dolphin Tale. Promise me you will. It’s amazing. I just saw it.”

Was that a snicker I heard on the other end of the phone?

“Um, yeah, sure,” she said, pausing for a moment (probably to snicker some more, silently). “Really?!”

“Yes!” I said, still red-eyed from crying for two hours over the (SPOILER ALERT) heart-warming tale of a dolphin that loses its fin in a tragic fishing accident — then finds a soulmate (and a rescue) in a young boy who has poor social skills and worse grades after being abandoned first by his father and then his cousin, who returns injured from an unnamed war (get it? just like the dolphin!) and together the boy, his cousin and the dolphin — with help from Morgan Freeman — all learn to triumph over their particular “handicaps” — oh, and they also manage to save a marine rehabilitation facility that was about to close due to lack of funding. And there’s a big hurricane.

It’s based on a true story, you know.

Fine. When you put it like that, I’m snickering a little, too. What’s happened to me, I wondered after I hung up the phone with my 24-year-old pal — a girl who, like me, curls her lip at feature films and knows all the latest alternative bands. Oh wait, that used to be me. Am I losing my edge?

Have I changed?

The other day, I was chatting with my dear friend Deborah about something or other and I happened to comment that I haven’t changed one bit since Sophie was born.

Deborah didn’t snicker, she actually snorted. But I just don’t see it. Yeah, I might work a little less (or hide my workaholic tendencies better) and okay, today I did post a video to my Facebook page of Elvis Costello  and Elmo singing about how someone stole their red 2,  set to the tune of “The Angels Wanna Wear My Red Shoes” (a video that not long ago would have struck me as sacrilege) but really, I’m still the same snippy, snotty, sarcastic bitch I’ve always been. Right?

Most nights, Sophie finds her way into our bed and I find myself yelling at her in my half-sleep to quit kicking me. I’m not particularly kind about it. (See? I haven’t changed.) In the morning, she’s always full of apologies. The other night, Ray was out of town and Sophie and I shared the king-size bed alone. She stayed on the other side all night. I didn’t even know she was there til a little hand reached over to softly hold mine, just as the sun was beginning to peek in through the curtains. I opened my eyes and melted, albeit blearily. (OK, maybe I’ve changed a little.)

As we were getting into the car after the movie this afternoon, Annabelle remarked that Winter the tail-less dolphin reminded her of Sophie. “Well, it’s not like Sophie can’t walk, but she can’t run as fast as other people. She can’t do a lot of things other people can do,” Annabelle said matter-of-factly.

She pulled her seatbelt across her chest and sighed happily. “I’m just so lucky to get to have Sophie as my sister,” she said.

I’m lucky, too, I thought, as we pulled out of the parking lot.

I’ve always thought that, right?

OK, maybe I have changed. Maybe a lot.

But hey, who hasn’t? I looked up a video of Elvis singing the red shoes song from 1977. Now that’s a difference. Check him out.


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Party Hat

Back to It.

posted Monday October 17th, 2011

“Sophie’s being a real ballbuster today,” I confided in my mom on the phone yesterday morning — in what I thought was a low tone, masked by the car radio.

“No, your daughter’s the ballbuster!” Sophie fired from the back seat, making sure she said it loudly enough for her grandmother to hear.

I cracked up. Who knew Sophie knew the term ballbuster? She surprises me all the time, she’s so smart. And she’s everywhere. Earlier this week she found an old VCR copy of the movie “St. Elmo’s Fire” in a pile somewhere in the house and refused to accept that furry red Elmo isn’t in this particular movie, even when I showed her the trailer online. (I don’t recommend that — it’s a pretty explicit trailer. Ooops.) Later she showed me web sites (educational and totally appropriate, I promise) I’d never seen — and showed me how to use them.

All week long last week, Sophie was just Sophie. Judged against no one, on her own. More than holding her own. It was Fall Break. No school. Today we’re back to it. Back to the reality of a week and a half ago, when Sophie’s teacher pushed the first-quarter report card across the desk at the parent/teacher conference.

“I don’t want you to get upset about the Ds,” she started off, sounding nervous.

I stared at the sheet, a mass of letters and numbers that swam around for a while before falling into place. Damn, I’d forgotten that they give them letter grades in third grade. A D in math, a D in reading.

I only half-heard the explanations, the promises that the reading tests would be getting easier, the resource teacher chiming in with an idea that just came to her — something about making a list of steps to complete when rounding numbers in math problems.

Two Ds? A D in reading?! That’s Sophie’s best subject. Used to be, anyway. Shit. The Slide I’ve worried about, told myself I was paranoid about, silly about — it’s for real. Her tests are modified — they’re supposed to be, anyway — and still, Ds?!?!?!?!

Sophie has no idea. Didn’t ask about her report card, and I volunteered nothing. Ray scoffed. “She didn’t fail, did she?” he asked. “That’s good!”

It’s not good. It can’t be good. Is Sophie learning anything? Will she keep falling behind, til she finally does get Fs (at this rate that’ll happen pretty freaking quickly) and they announce it’s time to send her to the MR room at the other school? Should I give in? All this teaching-to-the-test — it’s bad enough for a typical kid. There’s no reason for Sophie to endure it. So why are we putting her through that?

Damned if I know. And for a week, I put it out of my mind, pretty much. But I can’t ignore it any more. Today we’re back to it.


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Party Hat

Wigging Out

posted Tuesday October 11th, 2011

If Annabelle remembers anything about the fifth grade, I hope it’s the bright red wig I bought her one Friday after school.

I wouldn’t typically indulge one of my kids like that (have you bought a wig lately?! expensive!) but she’d been asking for weeks — said she needed it desperately to complete her Halloween costume, she’s going to be a devil — and one afternoon I gave in. I needed to see her smile.

Years from now, she might not remember the wig. I did an inventory, and here’s what little I recall from my own fifth grade experience:

1. Around Christmastime that year, a kid kicked my Snoopy lunch box — hard — and informed me that the Jews killed Jesus. (Awkward, since I was one of the only Jews at the school.)
2. A boy named Jay (I don’t recall his last name, though I remember his straight, blonde feathered hair) gave my friend Ilene Becker a gold “s” chain necklace, and announced that they were going steady. A few days later, she gave the necklace back. I never knew why.
3. My teacher, Mrs. Creighton, accused me (wrongly) of plagiarizing a social studies paper. To this day, my mother holds that up as an indication of my academic prowess. (I tended to get shitty grades, though I could write okay — she had to have something to hold onto.)

That’s it. A whole year, three odd memories. After watching Annabelle suffer through the first few weeks of her own fifth grade experience, I’d like to grab one of those wands they use on Wizards of Waverly Place and make it all go poof.

I haven’t written much about Annabelle’s time in fifth grade so far, mainly because lately I’ve had that feeling that I have when I see women breast feeding kids who are walking and talking and doing calculus. My feeling — and consider the fact I was never able to breast feed, so maybe I’m bitter — has always been, “If you’re old enough to ask for it, you’re too old to get it.”

In other words, Annabelle’s getting too old to blog about. Perhaps her experiences were always her own — and I am a terrible mom for publicly documenting any of them, ditto for Sophie — but now that she’s asking me questions about my blog, questions like, “Do you write about me on there?” it’s seeming like it’s definitely time to leave her be.

(And I promise to do just that — as soon as I’m done with this post.)

“Maybe you’ll start your own blog sometime,” I told her during one of these discussions. She liked that idea, and even came up with a name: Masquerade Ball.

But there hasn’t been time to start a blog, not for Annabelle, who is completely overwhelmed by her new school. I try explaining that cramming choir, piano and dance on an almost daily basis alongside academics means a lot of pressure, and I know she gets it on an intellectual level, but emotionally it’s tough. She’s getting good grades, turning in her work, even admitting (some days) that she loves her ballet class. But she’s so stressed out. The other day she told me that it feels like she’s forced to play that game where you bounce a tennis ball on a racquet, keeping the ball in the air — all the time. And she desperately misses her friends and teachers from her old school. Even after almost two months.

All my friends with older kids at the school warned me this would happen, that fifth grade simply sucks — but after that, new study habits will be in place, schedules will run like clockwork, it will all be worth it. I believe them. But it’s so tough right now. For years, in parent/teacher conferences, my one question for the teacher has always been, “Is Annabelle happy at school?” I want her to be happy, to be stress-free, to excel but to love it. I don’t want her to be the neurotic mess I was (and am).

Too late. I just hope it doesn’t last — or that the memories don’t. One thing that’s gonna last is that wig. It looks like it could withstand a nuclear war. Which is good — since for what I paid for that thing, it’s your Halloween costume til you’re 18, Annabelle.

As for Sophie, I’m not done blogging about her. I’m just not sure what to say about her latest parent/teacher conference. I’ll be back when I figure that out.


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Party Hat

Baby’s First Embroidery

posted Thursday October 6th, 2011

Look what Sophie did — all by herself.

OK, she did have some guidance from her amazing physical therapist, but really, I’m told, she did all the stitching on her own.

“M” for Mommy. (Sorry — Hipstamatic washed out the purple M a bit.) She also did an “S” for Sophie and has plans for “A” (Annabelle) and “D” (Daddy).

One more thing Sophie and I will be able to do together in our old age! (Along with read and get pedicures.) Except that she’s way better than I am. You should see how clean the back of her piece is.


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Party Hat

“This is for you.”

posted Monday October 3rd, 2011

Last night, as I was cleaning up and getting ready to turn out the kitchen lights before bed (which makes my kitchen sound much tidier than it is), I noticed a sheet of paper on the table.

Sophie had asked me earlier how to spell “this” but I wasn’t really paying attention. The writing is hard to decipher, so I’ll translate. It says:

This is for you. We all love you so much. We all do.

I’m not certain who the intended recipient was (though I have a good idea) and it doesn’t really matter. It was just a really nice piece of writing.  A nice thing to see, right before bed.


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Party Hat

Cheese Touch

posted Thursday September 29th, 2011

“Here Mom, you can have the rest of this,” Sophie said, gathering her book bag and paintbrushes, then  handing me the slobbery, rubbery piece of cheese she’d nibbled all the way around on the drive to school.

Watching the cheese hand-off, the sweet teacher helping her out of the car in the drop-off line laughed; so did I, and I was so distracted by the wet cheese in my hand that I didn’t realize I was dropping Sophie off in front of the school office, rather than the playground, where she’s supposed to go to line up for class.

Uh oh. 

Sophie hopped out, told me she loved me, and was headed on her way when I finally had a chance to roll down my window and holler, “Hey, Sophie, be sure to line up with your class! Don’t go in the office!”

The sweet teacher heard me and echoed my words, Sophie nodded, and as I was starting to pull away, I noticed she’d marched herself right up to the office door.

“HEY!” I called out the window. Sophie turned and looked at me, then turned back and opened the door.

“It’s okay!” the sweet teacher said. “She’ll make her way to her classroom eventually.”

Maybe I should have let her go. But I’d just had a long chat this morning on this very subject — Sophie not following the rules at school — with our state services coordinator. So I turned off the car and bolted into the office, where Sophie was standing in front of the secretary, waiting for her late slip.

“Sophie, the bell didn’t ring yet,” the secretary said. “Not even the first bell.”

But Sophie refused to budge. I had to count all the way to “3″ — threatening to carry her to class — before she finally moved toward the door. We walked together to the playground. I hadn’t been to the playground with Sophie in weeks; either Ray’s dropped her off, lately, or we’ve done the drop-off lane.

Just inside the school gate, I saw a gaggle of Sophie’s classmates — little girls she’s been with since kindergarten, girls she’s grown farther and farther away from, girls in grown-up tween-ish Disney channel outfits, girls telling secrets, girls who glanced over at us and quickly away, their lips curled up slightly. One of them smiled slightly at me, looking guilty. Then she turned away, too.

Sophie didn’t seem to notice them. “Cuddle!” she said, nestling against me. She stuck her thumb in her mouth and I thought about how we’re two months into the school year without a single birthday party invitation and about how I really don’t blame these little girls for ignoring Sophie. She’s got to be more and more like an alien creature to them as they grow up and she doesn’t. No wonder Sophie’d rather hang out with the school secretary.

The bell finally rang (a couple minutes had begun to feel like a couple hours) and it shook me back to reality and the fact that I’d abandoned my car.

I looked up and there was Sophie’s classroom aide, an incrdibly nice woman whose patience with my child has got to be wearing thin. The aide smiled a big smile and after a quick protest and a nudge from me, Sophie ran to her and buried her head up against the woman’s hip and I wondered for the umpteenth time if the whole aide thing is a good idea or not.

The aide showed both of us some awesome new stickers she’d found for Sophie’s daily behavior charts, I told Sophie I loved her one last time, and the two of them made their way to the classroom line-up.

I walked to the car, wondering why I’m trying so hard to fit my square peg into a round circle — and how I’m going to get that mushy cheese out of my cupholder.


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Party Hat

I Like the Sprite in You

posted Wednesday September 28th, 2011

Mark your calendars, folks. Sophie has been cast in the Snow Queen, December 3 and 4 (matinees only) at the Herberger Theater in Phoenix.

She will be appearing in the role of Sprite.

This is big. And scary. Not scary for Sophie — she’s thrilled. Scary for her mother, and probably (though they aren’t saying) for the people behind the Snow Queen, which is the holiday performance put on by Center Dance Ensemble, a modern dance company in town.

Think of Snow Queen as the non-Christmasy, less-uptight version of The Nutcracker. But less uptight does not mean less professional. This is quite a show, and the junior cast members (there are many children in each performance) are expected to behave and perform.

Ditto for Sophie.

This will be Annabelle’s fourth year in Snow Queen. Sophie’s been asking for years for a chance to audition. That chance came last Sunday. My mother (who — full disclosure — runs a dance studio with the woman who runs Center Dance Ensemble) suggested I put Sophie’s hair in a bun, to set a professional tone. So I did; I believe it’s the smallest ballet bun ever made. Sophie promised to try not to suck her thumb during the audition, and as soon as it was over, motioned to me through the studio window — sticking her thumb in the air and shaking her head — to indicate her success. She looked so proud.

So did I. I think I held my breath for a whole hour, as the instructors (including my mom) put 40 or so kids through the paces. At first, I wasn’t so sure it would work. Sophie insisted on ballet slippers when I had left them at home, so she did the entire audition in shoes several sizes too big (I dug them out of a box in the back of the studio; this was after I had to forcibly remove my mother’s shoes from Sophie’s feet — she’d grabbed them out of her bag — and warn her this all could end before it had begun).

Just before the audition, Sophie wandered out for one last hug and our dear friend Maria wished her luck.

“Break a leg, Sophie!” Maria said.

Sophie looked very serious.

“I can’t,” she told Maria.

Sophie was not able to do the heel-toe required for the Villagers, and she will most likely never be able to do the steps required to be a Rosebud, but she definitely has the moves to be a Sprite — and she demonstrated that at the audition. So that’s what she will be. We got the email last night.

I am keenly aware of the special favor here (I am pretty sure there’s never been a special needs child in the Snow Queen cast) and prepared to gently remove Sophie if rehearsals don’t go well. But she tends to be a  kid who rises to the occasion when then occasion is a fancy party — and this is one fancy party. She’s going to go nuts when she sees how cool it is backstage, not to mention what it’s like on stage. All the kids do.

One more reason I really need to get going on that arts charter school that welcomes kids with special needs.


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Party Hat

Sophie’s Rules

posted Tuesday September 27th, 2011

Sophie and I played Uno this morning. I’d never played before — mine was more of a gin rummy family, growing up — so I’m not really sure I learned the traditional rules of the game. But I have to say, she did seem to have a command of it, instructing me regarding colors, numbers and symbols.

The game was rolling right along when suddenly, Sophie grabbed a bunch more cards that by this time I realized were not part of her turn.

“Hey!” I said. “That’s cheating!”

She just smiled and explained, “I wanted to win.”

Then she gathered up the cards and asked me to deal again.

As I shuffled, I wondered whether I should have put my foot down, insisted she play by the rules. But she was playing by the rules — her rules. That’s fine in an early morning game of Uno with your mom, I get that. But it doesn’t translate well to the real world.

Last week, the school nurse called me. Sophie had shown up without permission in her office for the second morning in a row, insisting she had not eaten breakfast.

“I gave her some milk and crackers,” the nurse said, “but I figured I should call and ask you what’s up.”

I assured her that Sophie was not starving; that morning before school, she’d had a Carnation Instant Breakfast shake and at least half a dozen mini pancakes.

We laughed, then it got serious. Sophie’s not to be going AWOL from the classroom (albeit with the aide on her tail), for obvious reasons. I knew she’d escaped once already that week, because last week Sophie’s clearly exasperated but ever-effervescent teacher had announced it was time for a Behavior Plan, in the form of slender purple slips printed with each of Sophie’s class times and a space for a sticker if she’s been good — or a note from that particular teacher, if she hasn’t.

She got quite a few stickers last week, but there have been some notes, as well. Yesterday’s slip was not good. “Sophie struggled to follow directions. It took about 10 minutes to re-direct her,” the special ed teacher wrote.

Ten minutes?!

And from her reading teacher: “Sophie had a very tough time listening today. She took things that belonged to me and refused to give them back.” In the end, the note explained, the aide had to take Sophie into the hallway to read her story.

If she wants to, Sophie can pay attention just fine. I know that. On Sunday, I watched her follow instructions for a full hour in a dance class with 40 other kids (all “typical kids”) as she auditioned for a holiday performance coming up, one she really wants to be a part of. (More on that later this week when we find out if she got the part.)

But how do we motivate her 24/7? Should we even try? Crappy “Way to Go” rainbow stickers aren’t working, and I’m not even sure paintbrushes have kept their appeal.

Of course, just when I give up, Sophie proves me wrong. We played that second game of Uno without incident. At one point she looked over at me and motioned to my hand.

“Say Uno!” she announced, excited.

I looked down, not realizing I only had one card left.

“Uno!” I said.

“You won!!!” Sophie said, beaming. “Let’s play again.”


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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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