Party Hat

t-i-o-n, shun shun shun shun!

posted Friday September 23rd, 2011


We’ve been spending a lot of time on spelling lately. Sophie’s only assigned the first seven or so words from the weekly list, but it’s still quite a challenge — for the entire family, as well as our cadre of sitters/habilitation workers. This week’s words are particularly tough: action, vision, motion, nation, section, tension and vacation. (The irony of the combo of the last two is not lost on me.)

All week, I’ve gone around with that old Electric Company bit about -tion in my head, so we looked it up on YouTube. I’m not sure that will help Sophie on her test today, but we had a lot of fun watching it.


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Party Hat

I called my sister from the parking lot at CVS yesterday. Sophie fought me for the iPhone, but I managed to get in a short conversation before she grabbed it away.

“Where are you?” my sister asked.

“The parking lot at CVS,” I said. “We were just at Walgreens, picking up Sophie’s thyroid pills, but she says the paintbrushes are better at CVS so we came here, too.”

(In case you didn’t know, Sophie is obsessed with paintbrushes.)

My sister thought that was hilarious, which I though was a little nerve-y after she explained that she had to go because her kid had begged her to buy the tie-dye frosting/rainbow sprinkle cupcake mix at the grocery store but upon seeing the mix itself now wanted only tie-dye frosting and no rainbow sprinkles.

“I better go,” she said. “I either need to find some vanilla cupcake mix or get out the tweezers.”

“OK,” I said, batting Sophie’s hand away, as my sister yelled at her own kids to give her a minute. “Sophie’s dying to either get those paintbrushes or get on the phone with you. Talk to you later.”

The saddest part? That was a long conversation for my sister and me.  Before we hung up, we agreed that neither of us has much interest in seeing the new Sarah Jessica Parker movie, and not just because it’s getting such crappy reviews. We are living our own technicolor versions — and it’s not pretty.


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Party Hat

Super (Sad) True (Love) Story

posted Friday September 16th, 2011

Has the book gone post-modern already?

Everywhere I look, someone’s stamping an image on a page of a book they’ve pulled apart and calling it art (didn’t that used to be called blasphemy?!). The other day I saw a dress made entirely out of pages from old books. And yesterday I heard that my employer, a newspaper, is throwing a party in what used to be a Borders bookstore.

The other day, in line at the check-out stand at Safeway, Annabelle hugged me and said, “You smell like your work.”

“You mean like a lime-scented candle?” I asked — that’s what I’ve been burning lately.

“No,” she said. “You smell like newspaper.”

That made me wonder what a blog smells like.

And all of this makes me think of my favorite book so far this year, Super Sad True Love Story, by Gary Shteyngart.

I mentioned this to my dear friend Cindy, who actually runs a bookstore, and she sent me the trailer to Shteyngart’s book. Like the book, it would be hilarious — if it didn’t ring so true.


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Party Hat

Does Annabelle know what society has in store for Sophie?

posted Thursday September 15th, 2011

I looked down the grocery checkout counter yesterday afternoon, right into Sophie’s face.

It’s not so jarring anymore. Megan has worked at our Safeway for years, quietly bagging groceries and avoiding eye contact, clearly well-versed in the concept of Stranger Danger, even if the stranger is a frazzled-looking mom type complimenting her cute headband. Of course she and Sophie don’t look exactly alike, but the similarities are unavoidable, and Ananbelle’s face lit up when she noticed Megan, stage-whispering, as we walked away, “She has Down syndrome!”

Annabelle doesn’t see people with Down syndrome much. Me, either. It sparked a conversation.

“Do you think that’s what Sophie will do when she grows up?” I asked, tilting my head back toward the store as we rolled through the parking lot and began unloading groceries.

“No,” Annabelle said. “I think Sophie will be a pediatrician.”

“Really?” I asked. “You really think she could do that?”

Long pause.

“Yes I do. Or maybe a dentist.”

I didn’t say anything.

What does Annabelle really think? It’s so hard to know. These first few weeks of fifth grade  at a new school have been so stressful, full of growing pains. But good, too. I feel her stretching in big and small ways; yesterday was the first time she voluntarily unloaded groceries from the cart without being asked. She’s started asking me questions about my job.

Does Annabelle know what society has in store for Sophie? Does she know something I don’t know? Or is she simply indulging in a fantasy?

Either way, I love that kid.

“I think Sophie can be whatever she wants to be,” Annabelle added, climbing into the car and buckling her seat belt.

“So do I, sweetie,” I said under my breath, as I started the car. “So do I.”


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Party Hat

A Story that Belongs to Us

posted Sunday September 11th, 2011

Ten years ago this morning, I was sitting in front of a tiny color TV set we just gave away last year, watching a rerun of E.R. and trying to get Annabelle to eat. At 8 weeks, she was more of a puker than an eater.

The scene cut abruptly from medical drama to a real live one, and I tried to figure out what all that black smoke on the TV screen meant.

“Raaaaaaaaaaay!” I called. “You better get in here.”

We watched like the rest of the world.

And then I got annoyed.

“OK,” I said, holding my finger in the air. “The phone will ring in three, two one –”

Briiiiing.

The newsroom at the daily where Ray worked at the time. Right on schedule. What on earth could the city editor want? Really, I thought, will anyone will be interested in “streeters” (the term jaded journalists use for those man-on-the-street interviews you do in your hometown, to tie it to the tragedy du jour) when this is so obviously not a story that belongs to us, but New York City’s tragedy?

Of course as it turned out, this was the nation’s tragedy. The world’s. And by week’s end, Ray was right in the center of reporting the not-insignificant Arizona connection — one of the pilots had lived and trained not far from our home in Tempe.

I was not  happy about the father of my newborn baby traipsing around shady apartment complexes, talking to that pilot’s friends and neighbors. At the time, we had no idea where something like that would lead. Nerves were raw, the future uncertain. Couldn’t leaving New York be a plus for once? Keep us out of danger?

Ray did good work on that story. And as it turned out, a man did die on the streets of metropolitan Phoenix, and it was tied to 9/11, but it had nothing to do with that pilot, not really. A sweet man who happened to be a Sikh (meaning he wore a turban) was gunned down outside the gas station he owned in Mesa by some terrified, angry, incredibly ignorant asshole.

Two days after 9/11, I taught my first class for Mothers Who Write. Unsure of what else to talk about, and unsure of my new role as instructor, I asked students to write down what happened to them on 9/11 and read it aloud.

Last week, my co-instructor Deborah Sussman and I asked our students to interview one another about where they were 0n 9/11/01. No one had trouble remembering. Almost every story started like mine, in front of the TV, and as I listened I realized how important it is that these stories are told — and heard.

No one was ever quite the same after that day. But I don’t have to tell you that.


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Party Hat

Face Value

posted Friday September 9th, 2011

“Sophie must get talked about more than any other kid at that school,” Ray said, when I recounted the details of yesterday’s meeting this morning as we both raced around the kitchen, getting ready for the day.

Yeah, I thought to myself. And I bet I get talked about more than any other parent.

That’s definitely the vibe I got when I saw the huddle outside the conference room when I arrived for Sophie’s one-month-into-school-how’s-she-doing meeting yesterday spot me, and I felt it again when a weird hush fell over the room when I walked in and took the last chair. 

I smiled a lot. So did the principal, teachers, aide, therapists and district special ed coordinator. It was a very congenial meeting, full of praise for Sophie and her progress (now it only takes five minutes to redirect her when she falls off task!) and news of what’s going on in the classroom.

I could pick that hour-long meeting apart second by second (let’s be honest, of course I already have, a hundred times) and focus on some condescending tones (“Sophie’s so happy!”) and some warning signs (really? FIVE minutes? that seems like an eternity) and wonder how much rehearsing and editing went into the glowing speeches around the table – or I could believe these people when they say they love her and she’s keeping up.

I could try to take it all at face value. That’s what Sophie does. Hey, it works for her.


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Party Hat

Smile!

posted Wednesday September 7th, 2011

Last night Ray and Annabelle hit the rock gym, while Sophie and I hit the couch.

Sophie had the sniffles, and in a rare moment of family consensus, it was determined that a mellow evening and early bedtime were in order. Sophie and I texted friends, watched some Nick Jr., and took pictures of ourselves til our faces hurt. The photo shoot was the best — even if the photos weren’t. Sophie and I both cracked up, trying to get a good shot of the two of us together.

Looking over the photos, I realized that most of mine captured Sophie — with just my big mouth in the background, grinning like mad as I groped for the “shutter” button on the Hipstamatic. What I’ve always called a Courtesy Smile.

Sophie smiles a lot, but she doesn’t have a courtesy smile. Annabelle does. So do I. You probably do, too: That big fake smile you flash when someone pokes a camera — or a tough situation — in your face.

Tomorrow afternoon I’ll slap on a courtesy smile and head into Sophie’s school for a one-month-into-the-school-year-how’s-Sophie-doing meeting with her “team.” Everyone from the principal to the classroom aide will be in attendance, including the district’s special education coordinator, who has been attending our meetings since I upped the ante last spring and hired a lawyer to represent Sophie.

Sophie’s lawyer won’t be there tomorrow, she doesn’t think it’s necessary. So I’m on my own. I’ve been scribbling notes on scraps of paper and the back of my hand, sending myself email reminders all week so I don’t forget anything. I’m a mess. I have no idea what I’m doing, and there’s no time to get a degree in special education (and several years experience in the field) before tomorrow.

Nothing terrible has happened so far this school year (that I know about) but third grade is a Big Year and I can already feel Sophie starting to slip. It’s up to me to keep her from falling.

Really, I have nothing but questions to bring to this meeting. Questions, and a big smile.

Funny, Sophie was the one who managed to get the whole picture, when she got ahold of the camera phone.


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Party Hat

Happy September

posted Thursday September 1st, 2011


I’m not one, typically, to wish you a happy (insert day of the week). But for September — for an entire month — I’ll make an exception. If you live where I live, August is the cruelest month, a time of desperation. Every year, it feels like August will never end. And while I know the heat won’t let up for weeks (months), I’m always happy to make it to September. It’s like seeing the first buds on the trees in spring.

In honor of my glee, I want to share a song (and dance, of sorts) my sweet friend Heather posted on Facebook yesterday. I’ve been really busy at work but I sat still and watched the whole thing — it was the perfect way to usher out the August blues.

Happy September.


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Party Hat

Responsibility, Celebrated

posted Thursday August 25th, 2011

Funny how things happen. I wrote that last post before I took a good look at the fridge.

Sophie’s third grade teacher does something that I absolultely love. She has a pouch on the wall and slips of paper on a shelf beneath. Students are asked to fill one out in honor of a classmate who has displayed exemplary behavior.

You would think someone gave Sophie an Academy Award, she was that excited when she told me about how the teacher emptied the pouch and pulled out a slip (she called it a “certificate”) with her name on it.

And for being responsible, of all things! How about that?

I’m not sure what “resposid” means, but I’ll take it.


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Party Hat

Taking Responsibility.

posted Wednesday August 24th, 2011

“Is this one-inch or half-inch?” Annabelle just asked me, holding up a black binder.

“One-inch,” I said, not looking up. Until last week, I didn’t even know that binders had sizes. Now, thanks to Annabelle’s new school, I am intimately aware.

She hid behind the binder and groaned.

“Really?” I asked in my most cheerful voice. “You need half-inch? Okay! No problem! We’ll get it tonight!”

What I really wanted to say was, “Jesus Christ, you have you got to be fucking kidding me. There is no way I’m going to any more flipping stores to buy any more goddamn binders!”

Last week — days before school was to start, feeling very early-birdish, and having been warned by other parents – I got out the two page list of school supplies the school requires, and we bought them all. I thought. I ran all over town gathering composition books with graph paper and lined paper, the right number of pens and pencils, a ruler, a stapler, a three-hole punch and several binders in the required sizes. The night before school started, I put the supplies designated to come to school in Annabelle’s backpack — even labeling them all with her name. The home supplies went in a Rubbermaid. Ballet clothes were all ready, including performance outfits and hair nets. I felt so organized, so prepared.

Not. Annabelle came home Monday night and tearfully announced she was short two 1-inch binders.

No problem! Off to Office Max I went. And then Walgreen’s, when it turned out that one of the binders needed to be black and I had bought orange. That was nothing compared to the following night, when I learned that a. Annabelle had to have her ballet text book for class the next day and b. although I’d ordered it in (what I thought was) plenty of time from amazon.com, it had yet to arrive.

No problem! I called five bookstores til I found a copy at the Bookman’s at 19th Avenue and Northern. “Hey, at least I don’t have to drive to Tucson,” I half-joked to Ray.

“Wow, are you lucky,” the clerk said. “We only have a half-shelf of dance books. I’ll hold this for you, it’s $2.50.”

$2.50 plus the $10 in gas it took to get there, plus what I spent on the now-useless first copy. No problem! Not a big deal. All part of the adventure.

“This is like a Hanukkah miracle!” I announced to the girls as I piled them into the car.

On the way to Bookman’s I learned that Annabelle couldn’t find one of the two books she was required to read over the summer and was now required to bring to school — the next day. Bookman’s didn’t have a copy (of course) so that’s how we wound up at Changing Hands. No worries! No problem! Happy to support independent bookstores.

We dragged home long past 9 — the new official bedtime in our house. 5:30 came awfully quick this morning. I walked into the kitchen and poured myself a cup of coffee, which would have been great except we have a French press that no one had yet pressed. Ick. I was on my second Diet Coke of the day by 10.

And now I’ll be hitting Office Max again. That’s okay. Despite what you might think after reading this rant (and despite the fact that I’ve announced to anyone who will listen that Annabelle’s school is kicking my ass) I couldn’t be happier with her new gig. For as much as they talk about the emphasis on the arts at this school, I’ve already learned by Day 3 that it’s as much about personal responsibility as anything else.

Funny, it turns out I spent much of last spring finding a place that will push Annabelle to be more responsible at the same time I was pushing Sophie’s school to help her succeed by making her less responsible.

Let me explain.

My job with this first-week (oh how I hope it’s only the first week, though somehow I doubt that) runaround is to make sure Annabelle has the tools to succeed. The right-sized binders — that’s easy. Harder is the edict we parents received at a meeting last week: We are not, under any circumstances, to help our kids with their homework. They are to fail or succeed on their own. I love that, and not just because I can’t do fifth grade math. It makes so much sense and though I know she’s nervous, I also know Annabelle’s up to the task.

Not so much with Sophie. The tools are in place — she now has a classroom aide — and I’ve heard wonderful things about the woman. Sophie loves her. But clearly there’s some need for runaround on behalf of Sophie, too. For the last several days, she’s come home without her red “take home” folder. That means no spelling words, among other things. For me, it’s a huge red flag — it happened so much last year in second grade it became a serious hindrance, and part of my motivation to fight for extra help for Sophie. (It’s impossible to expect a teacher with dozens of kids to chase to stop everything and help Sophie pack up at day’s end — but it’s not something Sophie is responsible enough to do on her own.)

After an email to the teacher this morning, the red folder did appear this afternoon — so I’m hopeful that’s been straightened out. Meantime, I’ve consulted some experts, and got some good advice about ways for Sophie to keep track, and when her “team” meets early next month, we’ll talk about an “End of the Day” check list as well as some other tools that should help Sophie be more responsible — in her own way.

And I’m going to get more organized — for both girls.

Tonight Sophie will spend extra time on spelling to make up for lost days, while Annabelle fixes her science notebook. The class was asked to number the pages of their composition books to 200 — then to check one another’s work. Annabelle wrote 42 twice, so she is in the process as I write this (kid you not) of Liquid-Paper-ing all the numbers up to 42 and redo-ing them on the right page.

Bet she won’t make that mistake again.

She just blew on a page, looked up, and announced, “Sometimes I wish I was a dog or a cat.”

I know how she feels. As for me, I think I’ll buy one of everything at Office Max. Maybe two.


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My-Heart-Cant-Even-Believe-It-Cover
My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
Changing Hands Bookstore
. For information about readings and other events, click here.
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