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Acting Up

posted Friday August 21st, 2015

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In the end, I did not bring food to the first team meeting of the school year. Or a lawyer.

Instead, I brought Sophie.

It was not a tough meeting; I hadn’t expected it would be, or I likely would not have brought her. Sophie’s formal IEP meeting takes place each spring, and because so much can change in a few months, a long time ago I asked that the IEP require that a meeting be held within the first month of school. It’s been a really valuable tool.

We tweaked a few testing modifications and talked about lunch time procedures. Sophie interrupted several times, despite sharp (but, I hoped, kindly maternal) glances from me, and finally the speech pathologist jumped in and stage-whispered very loudly, “Do you want me to make this one of her goals?”

I nodded, my face hot. No one else in the room seemed bothered by Sophie’s excited questions and comments; I guess they are all used to it, used to her. Maybe more than used to her.

Mainstreaming a kid like Sophie is such a new thing at this school, a school that already has so many challenges, left with the kids who don’t qualify for the fancy gifted academy next door, whose parents haven’t sought out high-browed charter school options. This school, which is obviously starved for resources, with shabby edges and the challenges every public school faces today, has embraced my eager but challenging kid and given her the tools she needs to thrive.

Except for one.

Math, science, reading, social studies — Sophie’s getting it all, plus choir and visual art. It’s pretty amazing. But she’s made it clear that it’s not enough. She wants what other kids are getting. She wants drama class.

And so at the end of the meeting, I shifted awkwardly in my chair and made a little announcement. I know this has nothing to do with anyone at the school, I began, but I don’t want anyone to be blindsided, then explained that I’ll be approaching district administrators with my request to get Sophie (and any other kid from her school who wants to be) placed in a drama class at the gifted academy next door.

Some background:

When Sophie began middle school in sixth grade, she quickly realized that drama class was not among the elective options for students at her school. But it is for the kids at the gifted school. To complicate matters, the kids at the gifted school can take any elective offered at Sophie’s school; that is not reciprocal.

Sophie figured all this out before I did. She cornered the gifted school principal in the cafeteria at lunch and bugged him about this for months, to no avail. Ultimately I wrote a note to both principals and was told that no, this was not an option. You must qualify as gifted to take a class at the gifted school, even if it’s drama and not, say, pre-calculus. Sophie and I both tried to accept this, and took the options offered — including a not-great attempt at starting a drama club (which all but excluded Sophie) and the suggestion I sign her up for summer camp (that was a great week, but not enough).

I thought about it all summer, I told the team, and I have to say something. I haven’t done a formal analysis, but I’m willing to bet that the racial and economic breakdown at the gifted school looks a lot different from the racial and economic breakdown at Sophie’s school. Down syndrome aside, this is simply unfair. These gifted schools are segregating kids in dangerous ways that have flown under the radar — and someone needs to say something. Perhaps it’s easier for me, the parent of a kid whose entry into this school was never in question.

Plus, I don’t have a good explanation for Sophie as to why she can’t take drama. It doesn’t make sense to either of us.

And so, game on. Now the only thing to decide is what to bring along to that first meeting with the district administrators, assuming I get one. Food, the lawyer, Sophie? Maybe all three.


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Party Hat

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Sometimes you’re moving along through life, feeling like you have certain things down, know others to be true, and something happens that just completely rocks your world and makes you question everything you’ve done as a parent.

Or something like that.

A few days ago, a Facebook friend and fellow parent of a kid with Down syndrome posted an article about the relative merits of bringing food to IEP meetings. I stared at the computer, mouth literally hanging open.

Before I go any farther, let it be said that I am 100 percent in favor of gifts, including food, for everyone at my kids’ school from the crossing guard to the principal. Back to school gifts, teacher appreciation gifts, Christmas cookies, valentines — I’ve even been known to send round challahs during the Jewish holidays.  I like to connect on a personal level with the people who spend so much time and effort on my kid and ours is not a school where a lot of gift giving goes on, for whatever reason. As far as I’m concerned, teachers should be showered daily.

The gift giving argument is one for another day, though. I’m talking more specifically today about food at IEP meetings.

The IEP meeting is federally mandated and designed to create a document that gets a lot of scrutiny — a roadmap, in essence, for your kid with special needs. It’s arguably one of the most important sessions of the year. I’ve been through many, with a kid in seventh grade, and I can say that I’ve had my share of contentious IEP meetings, as well as uneventful and even a few downright pleasant sessions. But never with food.

To me, that’s like eating in church, one of the few times of the year when I have no appetite.

It never occurred to me — the one who made it my business to know the kindergarten teacher’s standing order at Starbucks, the principal’s dietary restrictions — to bring food to an IEP meeting.

Instead, when Sophie was in third grade, I started to bring a lawyer.

It would have been a lot cheaper to bring a bagel platter.

Do you bring food to IEP meetings? I’ve got one next week.


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The Eyes Have It

posted Tuesday July 21st, 2015

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I’m not sure when it happened — maybe it was always the case and no one noticed — but suddenly, Sophie’s eyes are two different colors. It’s subtle, but it’s there. One is greenish, the other blueish.

I pointed it out to her the other day, tried to get a closer look, and she pulled her head away, scowling. For a moment I wondered why, then I got it.

“You know, Sophie,” I said, “having two different colored eyes is not a Down syndrome thing. It’s a Sophie thing.”

Big grin.

To be honest, I’m not sure if it is a Down syndrome thing. But I’m not going to Google it. Not this time.

(Photo and makeup by Annabelle.)


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Travels with Sophie

posted Thursday July 16th, 2015

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Turns out, Sophie was born to travel.

She doesn’t get car sick, has no anxiety about flying, can sleep just about anywhere, and while she doesn’t pack light, her things are so small they never take up much space. She is pretty easy to feed as long as there’s bread, rice or some form of noodle on the menu; all she really wants is a to-go cup with a lid, preferably filled with cranberry juice but she’ll compromise.

And she loves hotels. Most of all, Sophie loves the front desk clerks at hotels. Maybe she’s got it in her blood (until recently, my family on my father’s side ran a hotel) or maybe it’s just because she is at her best with a captive audience.

She charmed so many staff members so quickly at the Ace Hotel in Portland a few weeks ago that by the time we checked into our room, there was a handwritten postcard and salt water taffy waiting for Sophie, wishing her a fun time. Later, a clerk overheard me admonishing Sophie for trying to score another free toothbrush and reached around me, silently handing her one. Without being asked, the bell boy produced a cardboard envelope to hold Sophie’s photo booth loot. It was out of control, in the best ways.

Then we got to San Francisco. Sitting in the lobby of the Hotel Triton, watching a young hotel employee teach Sophie to hula hoop, I started thinking about how we could make this a lifestyle. By the time that clerk had returned from the drug store with a coloring book and crayons for Sophie (no kidding and yes, I gave him a giant tip), I had an idea.

We should start a blog, call it Travels with Sophie, and make it all about her adventures — dancing in Jackson Square in New Orleans, walking Goofy down Main Street at Disneyland, doing the splits for President Obama in front of the White House. It would be great! Because Sophie is at her most awesome when she’s out in the world, soaking it up and letting it soak her up, too.

The next day we woke up and took a trolley to the Castro, wandered through the most incredible variety store (Cliff’s) I’ve ever seen, and stopped at a restaurant for lunch. Ray wasn’t with us in Portland, we’d joined up the day before in San Francisco, and he wasn’t as into Sophie’s super-friendly ways as I was.

Now I must pause to say that I totally get that. Sophie can overstay her welcome, and more important, there are some Stranger Danger and general etiquette lessons to be taught. So I don’t blame Ray for scolding Sophie gently after she’d asked the waitress what might have been her fiftieth question. And I didn’t think much of it as we all proceeded to finish our lunch.

A few minutes later, we’d paid the check and I took Sophie to the bathroom. I was still humming away, thinking about our future travels, high on vacation, when Sophie asked me, “Hey Mom, will I have Down syndrome my whole life?”

I felt my mood shrivel up and drift away, like a popped balloon.

“Yes, you will.”

“I don’t want to have Down syndrome.”

I didn’t know what to say, so I hugged her. It wasn’t the first time she’d told me she didn’t want to have DS, but it had been a while. Every day, it seems, I get more comfortable with the fact that she has it; not so for Sophie, apparently.

We walked out of the bathroom and Sophie picked up where she’d left off with the waitress, comparing notes on favorite TV shows, and we met up outside with Ray and Annabelle. The rest of the trip was filled with candy-making, browsing in Chinatown, walking (part of) the Golden Gate Bridge, then driving to LA, where Sophie charmed another set of clerks, securing free books from the hotel library and eliciting whispers of “Look at her! She’s so cute!”

And she was, strutting through the hotel lobby in one of her several wardrobe changes of the day, free from school dress codes, hard tests and unfriendly junior high peers. But not free from Down syndrome. That goes with her wherever Sophie goes.


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The S Word

posted Thursday June 25th, 2015

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I didn’t like the movie Inside Out, but not for the reason you’ve already guessed.

I will admit that I think about things too much — and also that I fell asleep during a critical time during the plot development of Pixar’s latest — but really, I thought the whole thing was a convoluted, over wrought mishmash of how to not try to explain emotions to your kid. Not in a meaningful way, at least.

In a word, I thought the movie was stupid. Which is kind of funny, since a lot of people have been criticizing it for belittling people who are not “intelligent” — a discussion that has now expanded to include other Pixar movies.

And, for me, life.

Because let’s face it, almost all of us (me included) use, see and hear the word stupid (and moron, idiot, dumb, the list goes on) all the time. It’s not just in Pixar movies. It’s everywhere.

The question: Is that okay? The answer: Please don’t make me decide.

At this point most of us can agree that the word retarded is not cool — not the way it’s come to be used, as a playground/Internet/water cooler slur. The rest of language gets a little fuzzy. Last night someone posted the above sentiment and I realized that this kind of thing is like pornography — you know it when you see it.

This one really cut me. “EXACTLY!” I practically yelled at the phone when I read the words, stark white on black, no cute old-fashioned lady illustration required to send it over the top. YES, I wanted to yell, I KNOW THAT WHEN SOMEONE ISN’T OF AVERAGE OR ABOVE AVERAGE INTELLIGENCE, THEY MIGHT NOT REALIZE IT. NO-FUCKING-DUH.

Here’s the thing. No one is going to “take back” the word retarded like queer, bitch and even nigger have been reclaimed, because there really isn’t the same kind of community around developmental disabilities. Not on a widespread basis, anyway.

By the very nature of the disability, a person with Down syndrome or another intellectual disability is bound to miss a slur, a slight, a nasty word. Like how dead people don’t know they are dead.

That is why parents like Jisun Lee take this kind of thing so seriously, and it’s probably why the word retard is the last big dig making the rounds in high schools and bars. This isn’t a community equipped to defend itself. Hence, what some consider an overreaction to the use of all related terminology.

I don’t like censorship. As a friend and I discussed the other day, I don’t want people to be afraid to talk around me, to cringe if they use the word dumb. I’m not sure I want to give it up, either. Words are powerful and we are their stewards and the best thing we can do is try to use them with care — acknowledging that in the heat of the moment, we all say things we later regret. As I like to say, it’s all a work in progress.

The best thing we can do is talk about it.

As usual, the person with the clearest vision on all of it is none other than Sophie.

Not long ago, she came home and reported to me that someone at school had used the S word.

“Oh dear,” I said. “That’s pretty strong.”

And then I had a feeling that Sophie wasn’t talking about the word shit.

“Can you say the word?” I asked.

“I can whisper it,” she said. “It’s a pretty bad one.”

I put my ear next to her mouth and she whispered.

“Stupid.” She looked a little ashamed, and shook her head like she couldn’t believe it.

Smart kid.

 


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Summer birthdays suck.

Particularly in Phoenix, and Annabelle’s is smack in the middle of July — the worst time of the year to gather friends. So last week we grabbed her ballet classmates (the ones who hadn’t yet fled the heat) and gathered for a little swim party.

Sophie squirmed the entire time, eyeing the present table, firm in the belief that present opening should be the first activity at any birthday party worth its salt. But Annabelle took her pile home, and as we sat at the kitchen table late in the evening I was glad she was able to open them in the light. The gifts were sweet — a homemade tee shirt with her current favorite saying (“Absosnootly!”), a super soft blanket, a succulent, a plush “piece” of toast with a fuzzy pat of butter on it (yes, you read that right — and the oddest part is that “a stuffed grilled cheese sandwich” is actually on Annabelle’s birthday list).

But the best part was the cards.

I’m not talking Hallmark here. Nothing pre-fab. Almost to a person, each gift included a handwritten (both sides of the paper, in tiny words) letter to Annabelle — complete with drawings of “bun heads,” rainbow markered wording, one girl even made her a book – wishing her the happiest of birthdays, and sharing sentiments about friendship, dance, beauty and life. There were personal jokes, historical references (if you count starting ballet together at 3 “historical” — these kids do), true expressions of love — all the stuff you’d want in a real letter.

Annabelle read each one carefully, her eyes big, and at the end she announced quietly that she was going to save them forever.

Don’t get me wrong. These are girls who text and Instagram and Snapchat (whatever the hell that is). I sometimes catch them sitting together but apart, staring at their phones the way we all do these days. But at a time when we grown ups are lamenting the demise of the old fashioned, handwritten letter, these kids have embraced it and even taken it to a new level.

The next day, I dug up all the half written, yet-to-be-addressed notes abandoned on my desk, finished them and mailed them off. It was a nice reminder that some forms of communication can’t be bested by an app. And I know one thing Annabelle’s getting for her birthday next month: stationery.

 

 


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butter charlene

I don’t know much, but I do know Phoenix. I’m a native (like, a real one — I was actually born here) and while I escaped for a few years, I’ve been back for more than 20. This city is a tough nut to crack, particularly in the summer. (Don’t worry, the forecast for next weekend is down to a balmy 109 degrees.) But in the last few years the city’s grown up a lot, and there’s more to do here than you might think. Better restaurants, too. Here are a few of our favorites.

(Be sure to call ahead for summer hours; you won’t likely need a reservation this time of year, but hours do change and sometimes folks close up for the summer. Another caveat: pretty much nothing on this list — and, in fact, nothing in general — is close to the convention site. Phoenix is a car town.)

FnB 

The one-two punch of Chef Charleen Badman and front-man Pavle Milic is irresistible. This is hands-down my favorite restaurant in town — high-end cuisine in a lovely, low key setting. Pavle will kill me for saying this, but I’ll warn you to steer clear of the Arizona wines unless it’s Todd Bostock’s sparkling rose in a can or Milic’s own line of wines. The menu is veg friendly (and kid friendly, too, though not for chicken nuggets-only types) but if there’s lamb that day, GET IT. And don’t skip the butterscotch pudding for dessert. Or the negroni. Side note: Charleen and my Sophie are BFFs — more than one science fair project has gone down in the FnB kitchen. (See photo above. from the time Sophie and Charleen made butter.)

(Other wonderful Scottsdale restaurants for dinner and cocktails include PoshCitizen Public House, Virtu and AZ88, where Sophie’s favorite is the grilled cheese and my favorite is the espresso martini.)

Barrio Cafe

Sophie also has a love affair going with Silvana Salcido Esparza, the chef at Barrio Cafe (she has a couple locations at the airport and recently opened Barrio Urbana as well). My husband and I remember going to the original Barrio for our first real meal after Sophie’s first heart surgery 12 years ago — the restaurant is in Phoenix’s barrio, a few blocks from Phoenix Children’s Hospital. We don’t see much of Sophie when we eat at one of Silvana’s restaurants; the kid disappears into the kitchen with the chef!

Other options for Mexican food in metro Phoenix: the Sonoran Hot Dog is a must-try “dish” and you’ve got to get it off a cart. If you want your food super-hot, go to Los Dos Molinos (my favorite location is on South Central Avenue, in an old adobe). Los Olivos in Scottsdale is basic Sonoran Mexican food, kitschy and kid friendly.

Hana

Okay, I get that sushi in the desert sounds kind of sketchy. But Lori Hashimoto does it right. She will also accommodate “someone” (not Sophie!) with a fish phobia. (Thanks, Lori.) Seriously, every fish lover I know raves about this place. So if you need a sushi fix while you’re here, this is the place. Lori’s another local chef on Sophie’s list of favorite people.

Welcome Chicken and Donuts

No, that is not a typo. I did not mean to write chicken and waffles. The folks behind the amazing Welcome Diner (come back during a cool-weather visit, the seating’s mainly outdoors) recently opened a place that pretty much only sells fried chicken and donuts in flavors like Key Lime Pie. And cold brew coffee, they serve that too. It’s pretty much perfect. And right near the airport. You’re welcome.

Crepe Bar

What Jeff Kraus does with a crepe should be a crime. This place is casual with counter-service and the line can be long but it’s worth it — and you’ll probably get a sample of the best granola you’ve ever tasted.

Pizzeria Bianco

It’s probably the city’s most famous restaurant, and it’s worth going! But go to the Town and Country (20th Street and Camelback) location. It’s closer to the hotel, and I can almost guarantee there won’t be the infamous wait. Make sure you ask for the chef’s mom’s desserts.

Super Chunk

Country and Sergio Velador are the Wonkas of Phoenix. You have to see it to believe it. Their little candy shop features only handmade items, from sweet and savory popcorns to brittles, hand-pulled taffy and gorgeous cakes. Sophie never makes it out of there without a small tub of chocolate chips.

Sweet Republic

This ice cream shop (with locations in Scottsdale, Phoenix and the airport — you can also find it at Whole Foods) is exactly what you’re going to need in Phoenix in June. Helen Yung is one of the most creative chefs I’ve encountered — she often mixes it with mash-ups with local restaurants and even a local beer, recently. And you should watch her order dim sum. Both my girls are in total awe of Helen.

Shopping

Frances, MADE and Bunky Boutique, all in Central Phoenix, are amazing little indie shops. Our beloved bookstore, Changing Hands in Tempe, recently opened a second location in Phoenix — with a coffee/wine/beer bar. Sophie pretty much runs the joint (the book part, anyway) when we visit. She wishes there was a children’s drama section but otherwise it’s pretty much her favorite place in town.

Desert Ridge is the closest mall to the convention site — it’s okay but typical and big box-y and chain-y, and, be warned, outdoors. Even in the hottest months, they tend to keep large fires roaring outside; it’s a little disturbing. Kierland Commons is a better bet, though a little snooty and still outdoors. Scottsdale Fashion Square is giant and INDOORS. Score. (In Phoenix in the summer, one must learn to embrace the mall.)

Stuff to Do

There’s a children’s museum in downtown Phoenix, as well as the Arizona Science Center, Phoenix Art Museum (sorry, you just missed the Warhol show) and the Heard Museum (largest Native American art collection in the world). If I was going to choose one museum to go to, it would be the Musical Instrument Museum, which (bonus!) is actually close to the convention site.  We took Sophie several year ago and she loved it.

You’ll have a giant pool at the Marriott, so I won’t give you specifics about other pools in the area — but there are several, including water parks like the old school Big Surf in Scottsdale.

If you’re into Paolo Soleri, go to the late architect’s bell factory, Cosanti, in Paradise Valley. And of course there’s Taliesin West, Frank Lloyd Wright’s winter HQ. Or go hang out at the Arizona Biltmore hotel, built by Wright disciples. (And there’s a nice bar in the lobby!)

If you get desperate, you can always Google “ice skating” and “Phoenix.”

You also might want to get out of the heat entirely. The beach is six hours, so Flagstaff’s the best bet for that (two hours north on I-17) and when you’re there, be sure to go to Macy’s for coffee. Black Bart’s is super kitschy and silly, with waiters singing show tunes. Awesome. The Monte Vista is a cute, vintage hotel in the heart of downtown Flagstaff.

Hope that helps! Don’t forget sunscreen! 

 

 

 


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Leaning In to Junior High

posted Tuesday May 19th, 2015

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What a difference a year makes.

A year ago this week, I sat in the audience at Sophie’s elementary school “graduation” ceremony and sobbed, convinced that the Salad Days were over, that no school experience would ever be the same, that from now on my girl’s life would be a painful, downhill slog.

And in some ways, I was right. Junior high is big and scary and most mornings, Sophie pretty much refuses to get out of bed, out the door, out of the car. She hates the dress code. She doesn’t have many friends. I wonder how much of the curriculum flies right over her teeny, tiny head.

In other ways, I was so wrong. From the principal down — with very little exception — the staff could not have been more welcoming, open to mainstreaming a kid with Down syndrome when they never had before, and when they already have a host of inner city public education issues to address. This isn’t a school that receives a lot of tax credit money. I haven’t seen much evidence of a PTA, or acknowledgement of Teacher Appreciation Week. This is a staff that makes do with less and doesn’t complain. They take what they are handed, including a pretty tough group of kids, kids whose parents haven’t sought out charters or the district’s lily white, fancy alternative schools.

I’ll be honest: I sent Sophie to this school because I didn’t have a choice. And a year in, I’m so glad I didn’t. True, she never wants to get out of the car. But she’s glad when she does. Her beloved aide from third grade on waits in the courtyard, waving to me each morning. This school started a Best Buddies club when I asked, a drama club when Sophie begged. They welcomed her onto the cheer squad and after the first month, Sophie was fist bumping with the school resource officer and joking with the office staff. She’s a frequent flier at the nurse’s office, and is always welcome. I am uneasy with some academics (the social studies teacher’s reports have been pretty erratic), but I can say for sure that Sophie’s ending sixth grade with better math and Spanish skills than mine.

To be sure, friendships with peers are coming along more slowly. Sophie has yet to attend a junior high birthday party (is that even a thing?) and I hear she dances a lot at the school dances but I’m not sure that’s such a good thing for her social life since she’s apparently the only girl on the dance floor.

And yet last week I got a glimmer that everything is going to be okay. I skidded into the last choir concert of the year, late as usual. Sophie sang with enthusiasm, then sat with the rest of the sixth graders as the older kids performed. I was caught off guard at the end, when all the kids crowded onstage to sing one final song, “Lean on Me,” and I snuck around the back of the stage to get a glimpse of Sophie. As I rounded the corner, my eyes filled with tears. There she was — front and center, the smallest by a mile, singing her heart out — cuddled in the arms of a classmate. I didn’t know this girl who happily embraced my kid, including her so fully –for the moment, at least.

That moment is enough to keep me going all summer, to encourage Sophie to read a book start to finish, to invite some junior high girls over for play dates, to brace myself for August, when I’ll have to start waking her up early and pushing that dress code on her again.

This week, as I watch the reports of dreaded IEP meetings fill my Facebook feed and see parents express anger and frustration at being pushed out, I am sending silent encouragement to my fellow parents: First and foremost, push for what you think is right for your kid, but also listen to trusted advisors, like Sophie’s elementary school principal, who encouraged me to lean into this junior high.

And embrace those moments, when they come.

 


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In Defense of Teacher Appreciation Week

posted Wednesday May 6th, 2015

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The other day I was scrolling through Facebook and saw something that made the top of my head blow off.

It was a blog post entitled, Teacher Appreciation Week … Make It Staaaaahhhhhp!!

The author made it clear that she was not interested in dissenting opinions, so I kept quiet on her page. I like this woman. We have never met — as with many of my FB friends, we live in different states and have kids with Down syndrome in common. She is wise and funny and, to be honest, being friends with her on Facebook is like watching the Bravo channel in all the right ways. So I hope she doesn’t unfriend me after this.

But I’m willing to take the chance, because what she said really pissed me off.

I’m sure if this mom was here to defend herself she’d say she has nothing against teachers and everything against the tyrannical and annoying PTA systems that rule parents’ lives. I get that. Annabelle is almost 14 and I’ve never been to a PTA meeting, not once. Best decision I ever made. In fact, I kept my at-school involvement very limited from day one, keenly aware that I don’t typically play well with others.

I have always made an exception when it comes to Teacher Appreciation Week. It’s a simple concept that others like to complicate but the bottom line for me is that it’s a reminder to let our kids’ teachers — people who often spend more waking hours with our children than we do — know that we recognize their efforts. It’s also a chance to let our kids know that it’s important to say thank you.

And here let me say that while I’ve certainly been critical of some of my kids’ teachers and learning experiences over the years, there’s not a single teacher (well, okay, maybe one — and one principal) I am not eager to shower with gift cards and cookies. In many cases, a new car would not be enough. Charter, public, private, there’s so much debate and bad blood when it comes to education these days. But bottom line, what I see year after year is people willing to work insanely long hours for almost no pay to educate my not-always-easy-to-educate kids.

So no, I’m not going to pile on in a discussion about how shitty it is that the PTA is sending home Teacher Appreciation Week assignments. And if parents are competing to see who can be the nicest to the teacher,  I say good — let the coffee mugs and apples and spa gift certificates pile up on desks in schools across the nation.

The gifts don’t have to be expensive; flour, sugar, salt, eggs and butter for star-shaped sugar cookies cost me almost nothing but a couple late nights. None of this has to take the place of other forms of parental involvement (except, for me, PTA membership) and there’s no need to make a big deal out of it. It should be a no-brainer.

This year I didn’t receive word from either of the girls’ schools that the week was approaching (and that could well be my fault — the flyers might be lost in piles of fund raising appeals from the charter school and IEP notices from the other one) and frankly, for once I wouldn’t have minded an assignment. I Googled “when does teacher appreciation week start” last week and started preparing. I have two dozen people to thank at Sophie’s school alone, and at that I’m sure I’ll miss some. She was so excited that she insisted on writing the tags herself; I hope someone at school can help Sophie decipher her own handwriting when it comes time to hand out her gifts.

Just one more task for the educators.


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Cinderella Moment

posted Sunday April 26th, 2015

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Sophie took the stage one night last week in the junior high cafeteria. With a microphone in one hand and a large sparkly “slipper” (her nanny’s prom shoe) in the other, she performed a short monologue. She rushed and held the microphone too high, so I’m not sure anyone else could understand what she said, but I’d heard the piece so many times I got the jokes about being a bag lady ditched by her carriage, missing her tiara, waiting for her prince.

In any case, Sophie was charming — so proud of herself — that she got a big round of applause from friends, family, teachers and even her elementary school principal who stopped by to see her. Satisfied, she came down from the stage to sit with us for the rest of the performance.

A happy ending to my tale of trying to find a meaningful drama experience for Sophie at school, right? Well, no. Not really. Not at all.

Let me take you behind the scenes. Considering the amount of time she had to prepare and the instruction she got, Sophie deserves a Tony for last week’s performance.

First I must pause to heap well-deserved praise on the staff, teachers and administrators at Sophie’s junior high. As we near the end of her first year there, I am truly in awe of how accepting and accommodating they have been — opening arms, classrooms and the junior varsity cheer squad to my little girl. She still hasn’t made any really close friends, but she loves being a part of the Best Buddies club (it warmed my heart to see her best buddy in the audience last week) and word has it that she danced with at least six boys at the school dance Friday.

She still hates the dress code, and complains about going to school like any tween would, but I know there’s a lot she loves.

An after-school drama club was the cherry on the sundae — the result, in part, of my griping that there is no drama elective at Sophie’s school. The gifted academy on campus does offer one, but I was told in no uncertain terms that kids from the general population cannot sign up, even though the gifted kids are invited to take gen ed electives.

Sophie was thrilled to join the drama club, thrilled when she learned a couple weeks in that she had been cast in a scene with another girl. And then nothing happened. Trying to hold back (not my strong suit) I didn’t say anything. Sophie went to drama club each week, accompanied by her nanny, who reported that while most of the kids practiced a play, several others sat waiting for something to do. Including Sophie.

With a little more than a week to go before the scheduled performance, I finally emailed the teacher who had kindly volunteered to lead the drama club. She wrote back that Sophie had lost her first script, admitting that that acutally wound up not mattering because the other actor in her scene was pulled to take the place of someone who had dropped out of the main play, leaving Sophie with nothing to do. She could send a monologue for Sophie to perform the next week, the teacher said kindly, or Sophie could make posters and be an usher.

After some consideration, we took the monologue — a 33 line script that would have been hard for any kid (or adult) to memorize in a few days. I don’t know much about drama but my friend Kim taught me long ago that monologues are the toughest thing to memorize. I edited the monologue down to about 10 lines, got the teacher to sign off on it, and we (the nanny, Sophie’s aide and family members) helped her memorize it. My mother provided a costume (it’s nice to have a dance studio in the family) and the shoe was the final touch.

Sophie finally rehearsed in front of the teacher leading drama club the day before the performance.

Don’t get me wrong. I’m thrilled that there is a Drama Club, delighted that Sophie was allowed to join. And I get that it was the first time the school had tried it and that there are always going to be growing pains. I’m sure Sophie will want to join again if the club keeps going, and hopefully she’ll get a role next time — or at least be included in some meaningful way.

But I have to be honest: for as grateful as I am, the whole thing left a bad taste in my mouth. I don’t like that this time, at least, it was all for show. I winced when the drama club leader got on stage last week to praise the kids for working so hard for four months.

I can’t stop thinking about that drama elective at the gifted academy. Here’s the thing. Sophie is learning some relatively complicated math in school, which is good for brain development, but it’s unlikely she’ll use it in real life. The fall of Rome, which she’s studying in social studies, may or may not come up in casual conversation. If I had to guess now, I’d say that Sophie’s destined to do something in life that’s related to the stage. Yes, as has been suggested, I can sign her up for all kinds of after school classes and camps (her schedule is currently packed with them).

But still, I wonder what she’d get out of actually taking a serious drama class at school — one where she receives instruction and coaching, one where she takes part in the group activities. And what would the rest of the class get out of that?

Sophie will never come close to qualifying for the gifted academy. The thought is laughable. But I’m serious when I say that for as much as I find myself doubting her abilities and potential at time, I can’t help but believe that Sophie’s more than qualified for a junior high drama class, no matter where it’s offered.

And so next week I’ll be off to talk with administrators, to see if we can capture more than a Cinderella moment.

 


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Amy Silverman
Amy Silverman has two beautiful daughters, Annabelle and Sophie. Sophie has Down syndrome. These days, Amy divides the world into two groups: the people who adore Sophie, and those who don’t look twice. Amy has to remind herself that once upon a time -- when it came to people who are "different" -- she fell in the latter category. And therein lies the blog... Read more
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