Party Hat

Sophie at The Plaza

posted Tuesday March 28th, 2017

 

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I swear the guy smelled her coming. We had barely set foot in the lobby of The Plaza when he swept up, a slight young man in a dark suit, holding out a small bag of jelly beans.

“Would you like these?” he asked Sophie in his best concierge voice.

She took the bag and examined the pink and white sticker with the little girl in the iconic black jumper on it.

“Where’s Eloise?” she asked.

“Oh, Eloise is in Paris,” the sweet concierge answered, not skipping a beat. His name was Daniel. “She lives here at The Plaza, of course, but she does travel quite a lot.”

Sophie nodded, accepting this. I figured we’d hit the gift shop after that, but the man had stepped behind a counter, checked something on the computer, and was back.

“Would you like to see Eloise’s room?” Daniel asked. Sophie beamed.

For the uninitiated, Eloise does not exist. She’s the precocious main character in a series of children’s books by Kay Thompson, popularized by at least one feature film and I believe some cartoons. Sophie’s read the books and she saw the movie — all many years ago. I was a little surprised she even remembered Eloise, whose story centers around her life and mischief-making at The Plaza.

We were only in New York City for a couple of days, and we’d decided that each of us would choose one thing we really wanted to do. I wanted to visit the Marimekko store. Annabelle couldn’t decide (but I feel okay about this after I bought her a $30 pair of socks at Marimekko). Sophie wanted to see Taylor Swift’s apartment. This wound up involving trips to two boroughs (did you know that there’s a 155 Franklin Street — T.S.’s address — in Tribeca AND in Brooklyn? neither did our Uber driver) and a screaming, crying fit in front of Taylor Swift’s apartment, even though I’d explained beforehand to Sophie that there was no way we’d actually meet Taylor Swift.

Ray wanted to go to The Plaza. He said he’d never been. I lost interest in The Plaza long ago, around the time Donald Trump shut down the Trader Vic’s, but Ray really wanted to see it. After the T. Swift debacle I didn’t imagine Sophie would be into Eloise, but it turned out to be a pretty perfect scenario.

“Certainly she knows she’s not real, right?” I muttered to Annabelle as we crammed into an elevator and headed to the 18th floor. Annabelle shrugged.

Daniel handed Sophie the room key and she opened the door. I’ll admit I was impressed. The Eloise suite was designed by Betsey Johnson, and it features more pink than even I could stand (and pink is my favorite color). It’s pretty adorable.

“What is this, a thousand dollars a night?” I asked Daniel from behind my hand. “Three thousand!” he stage whispered back. Three times his monthly rent in Astoria.

Sophie’s questions were much more appropriate. She loved the whole thing, even wrote a note to Eloise (which she wouldn’t let me read) and put it in a special mailbox outside the gift shop (which we did eventually visit, of course).

In so many ways, Sophie is growing up, and I’m not just talking about the boobs or even the make up and the skinny jeans. She’s maturing. Slowly, slower than Annabelle, but I see it. And yet every time I think that she’s done with the kid stuff — I realize she’s not. I find her watching Peppa Pig or Elmo. She’s dying to see Piglet at Disneyland. She refuses to wiggle her loose teeth (even with the fear of surgical distraction looming) because she’s that afraid of the tooth fairy.

And she was super into Eloise, last week at The Plaza.

Until the day Taylor Swift comes through, I’m more than okay with that.

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Party Hat

What I Learned at Career Day

posted Tuesday February 14th, 2017

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For the first two years, Ray repped the family at middle school Career Day, talking about life as a journalist.

It was a good thing. Really, what would you rather hear about — the time Ray volunteered to be Tased at the hands of the Mesa Police Department or the last dozen “now open” restaurant stories I edited?

I thought so. The kids loved him. And so the stakes were high when Sophie asked me to come instead this year, her final year at this school. She wanted me to talk about the book.

And, as it turns out, about her.

“But Soph,” I asked, “what will I show them?” I didn’t even have a Power Point. There’s always a police officer with a dog at Career Day. This year someone brought a Tesla.

“I will be your prop,” she answered, and proceeded to scam her way out of dress code last Friday so we could dress alike (black dresses, white sneakers, glasses) and visit three classrooms stuffed with middle schoolers.

The night before Career Day, Sophie cuddled up next to me in bed and began a familiar refrain, one I hadn’t heard in quite some time.

“Mama, I don’t want to have Down syndrome,” she said in a small voice. “It makes it hard for me to get around.”

Sophie’s perfectly ambulatory, strictly speaking, but I knew what she meant. Navigating middle school — and life in general — is tough for her. Tougher than it is for most of us. Yes, we all have our challenges. No, most aren’t on the same scale as Sophie’s.

The next morning before school, I told Ray about the conversation and wondered if Career Day had brought this on.

“Of course it did,” he said. “I don’t see why you want to talk so much about her disability.”

But here’s the thing I realized once we were in the thick of Career Day. It’s Sophie who wants to talk about it. I am now worried I haven’t talked about it enough.

In order to discuss the book, we really had to begin with a definition of Down syndrome. Out of 100 or so kids, not one could say what it was. Not even close. “Um, is it something in your blood?” one girl asked. Hey, no judgement. I didn’t know either when I was their age. Mostly because I’d never met anyone with it.

Looking back, I wonder if anyone had ever addressed with these kids the fact that their classmate — in some cases from kindergarten on — is profoundly different? The same in many ways, yes, absolutely, but also not the same. Had they ever even heard the term Down syndrome?

I don’t know.

Last month, I ran into the principal from Sophie’s elementary school and he asked me to name one thing about middle school I wish had been different. I didn’t hesitate.

“The kids,” I told him, explaining that Sophie hadn’t really made any friends in the last three years. “They aren’t mean, not as far as I can tell. They’re indifferent.”

We agreed that it’s the age — middle schoolers are self-conscious and self-involved. Not interested in making friends outside their circles.

Maybe it was my imagination, but standing in that classroom with Sophie on Career Day, I could feel a sense of relief from both my kid and her peers as I explained Down syndrome in very simple terms, as the class came to understand why Sophie speaks differently and sometimes takes longer to master a skill (or doesn’t master it). As I talked, I felt Sophie at my side, nudging me.

“Tell them what I told you last night,” Sophie whispered.

“Are you sure?” I whispered back.

She nodded hard.

“Sophie wants you to know that she doesn’t always like having Down syndrome,” I began. Feeling defensive, I looked around, eagle-eyeing the crowd for snickers or eye rolls.

Instead, the kids were quiet and respectful, watching and listening.

“Here’s the thing,” I said, making it up as I went along. “We all have something about us that we’d like to change, right? Is there something about you that wish was different?”

Around the room, heads began to nod.

It didn’t feel like I said enough, but I wasn’t sure what else to say.

I read an excerpt from the book about Sophie’s kindergarten experience and she handed out book marks. The kids asked some questions about my day job as a newspaper editor. I wasn’t the most exciting speaker of the day — I could hear a Marine grunting and singing in the room next door as I read aloud. But the kids applauded politely; Sophie was clearly thrilled.

And as I left the last session and headed out to my car I noticed someone had scratched a heart onto a classroom door. I decided to take it as a sign — a good one.

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Sophie and Algernon

posted Thursday February 2nd, 2017

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I got an earful from the social studies teacher today at parent/teacher conferences.

Apparently Sophie has had a crush on House Speaker Paul Ryan since the fall, which causes her great consternation as she tries to juggle his appearance (good) with his politics (bad), I was told. Today, when the social studies teacher announced to the class that Rex Tillerson had been confirmed, Sophie had a question.

“Is he cute?”

Ah, so she’s about as shallow as most of America.

This guy obviously adores Sophie — all her current teachers seem to — and they love to share stories about her. I love to hear them, to imagine what her hours away from home are like. To know that with some support, she’s thriving alongside her typical eighth grade peers. And even providing a little comic relief.

I was still feeling high from laughing with the social studies teacher when I sat down at the English teacher’s table. This stop felt perfunctory. English is Sophie’s strongest academic subject, and I already knew she was doing relatively well. We talked about her current studies and the challenges of understanding inference, and then the teacher mentioned the next story the class would be reading.

“It’s `Flowers for Algernon,’” she said, eyeing me carefully. “Maybe you’ve heard of it?”

I felt the air go out of me like a balloon.

I swear I could even hear the hissing sound and I looked around to see if anyone else could hear it, too. My cheeks were hot.

“Yes,” I said. “I know about it.”

When Sophie was a toddler, I did some research into the drugs they say might someday boast the IQ of a person with intellectual disabilities. There’d been a trial, the Wall Street Journal reported back then, and a young person with Down syndrome participated. The results weren’t Charlie-Gordon-amazing, but they were pretty remarkable. And then the trial ended and the family couldn’t afford to pay for the drugs and things went back to the way they were.

This haunted me.

I traveled to Stanford to meet with the guy heading up a lot of this research. He told me that there would not be such a drug, at least not in Sophie’s lifetime, that would give her a permanent boost. He left me to his researchers, who gave me a quick tour of their lab and gently pushed me out the door, encouraging me to give her ginko biloba, pointing to a tree outside the lab. I left and picked a piece of the fruit and and wrapped it in a napkin and put it in my purse. It’s sitting on the windowsill of my office, all these years later. (All of this is reported in more detail in my book.)

So yeah, I’ve heard about “Flowers for Algernon.” I’ve read it several times. I loved it as a kid, and I love it as an adult — although now with a shimmer of pain.

I don’t know why I was so surprised to hear that this middle school classic was going to make an appearance in Sophie’s eighth grade English class, but I was.

I’m worried. This is a kid who knows she’s different and isn’t happy about it, who regularly tells us she doesn’t want to have Down syndrome. Is she going to read this story and want to know where her magic pill is?

I would. Fuck, I did. As soon as I heard there might be a pill I chased it all over the place. These days researchers are more optimistic, they think such a pill is close to reality. More likely, it will be something to stave off the effects of early-onset Alzheimer’s. (A good thing, since everyone with Down syndrome has the plaques on the brain that strongly indicate that early-onset is coming.)

Maybe she won’t make the connection, Sophie’s aide said.

Maybe she won’t. But what if she does? As I’ve asked so many times in the past, what if she’s just smart enough to know she’s not smart enough?

I called Ray and told him about it, fully expecting him to tell me I’m overreacting. He was quiet.

“I don’t like that,”  he said.

Me either. But in some ways, the most important ways, isn’t this what school is supposed to be about?

(Image by Monica Aissa Martinez.)

 


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I will admit that I was kind of meh on the whole pussy hat thing, but as soon as a post about the brain hat popped up on Facebook I was all over Etsy, looking for someone to make me three. One for me, one for my daughter, Annabelle, and one for my other daughter, Sophie.

Not long after, I heard that there was heated discussion on some other feeds about how these hats are “ableist,” that they celebrate and value intellectual capabilities in a way that’s insulting to people with intellectual disabilities.

That is completely ridiculous.

I will admit that I kind of gasped when I read it, because it hadn’t occurred to me AT ALL, not for one minute, that the brain hat  was in any way insulting (either by design or by accident) to Sophie, who has Down syndrome.

True, depending on the test results (I’ve got a pile of them) Sophie’s IQ ranges from the mid 50s to the mid 80s. The NIH (if it even still exists by then) will likely not be calling Sophie to head an important research project any time soon. (More likely to be a guinea pig in one.)

But I don’t know anyone who uses her brain more. I imagine that in a lot of ways, because of her chromosomal challenges, life for Sophie can be like running through a life-sized bowl of Jello. I’ll tell you what — she gets there, and often more quickly than others among us who don’t have a good excuse.

I mean, I suppose your brain hat can mean whatever you want it to, and maybe you will wear one because you have an IQ of 180 and you don’t want me to sit at your table at the local coffee shop (by the way, that has happened to me — there’s a MENSA meeting at the community table at one of my favorite coffee haunts every Wednesday afternoon and I’m constantly forgetting and getting booted from the table) but for me, this is about using what you’ve got.

And right about now, we better all be doing that.

Further, what better time than right now to celebrate the truly big brains among us, the keepers and finders of the concrete realities — the scientists, mathematicians and others who don’t have time for alternative facts because they’ve got real ones to back them up. I’m cool with both my daughters looking to these people as role models and heroes.

Finally, if we are going to waste our energy fighting over brain hats, we really are in trouble. Not very smart.

 


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Party Hat

Transitions

posted Friday January 27th, 2017

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We talk all the time about how tough transitions are for kids with special needs.

Hard on all kids, to be sure, but particularly tough when your kid’s brain is hard-wired at the cellular level to refuse to budge when requested. Thanks a fucking lot, extra 21st chromosome.

But how about how tough transitions are on the parents of kids with special needs?

And I’m not just talking about the daily transitions, although hours later I’m still reeling from the multi-pronged plan that allowed me to deposit my kid on the school curb just moments before the gates were locked for the day. I should have a giant blackboard like they use for military maneuvers; this morning involved strategic wake-up delivery of chocolate milk upon Sophie’s texted request from bed; the promise of her current favorite cereal (Special K) once she was dressed; my willingness to refrain from any singing or dancing during the getting-ready-for-school process and to pretend I didn’t notice when neither teeth nor hair were brushed and dress code was blown; and a lot of deep breathing. Today was one of the simpler days.

Anyhow. Back to transitions. The big ones. Like high school. Earlier this week I skidded out of work and across town to catch the tail end of New Student Orientation at Sophie’s middle school. As an eighth grader, she was asked to join her fellow cheerleaders in a performance designed to entice potential students. As Sophie shimmied and kicked I caught a glimpse of her elementary school principal and sidled up, waiting for him to finish a conversation so I could collect my hug. Of course he was here, ready to usher his current fifth graders into the middle school experience as he had been three years ago, when it was Sophie’s turn.

I still can’t look at this man without welling up. He took it upon himself to make sure Sophie’s transition from elementary to middle school was the best it could possibly be, which wasn’t great after we learned she wasn’t welcome at the schools where most of her friends were going. He personally accompanied her on a tour of the middle school. He met with the principal and staff and educated them about this quirky little kid who collected paint brushes and asked a lot of questions.

He loves Sophie and he let these people know it. Soon, they loved her too.

Looking around the gym, I saw all these people who love her — her teachers, cheer coaches, school counselor, office staff, the middle school principal — and I thought dammit, I’m not ready for another transition. Didn’t we just get here?

I don’t have a choice. Yesterday the secretary for the special education director for our local high school district emailed to set up a phone call with her boss. She didn’t say why, just that it was about our pending application. I stared at my computer screen and felt my stomach tie itself into knots.

Sophie wants to go to a school where she’s not technically welcome. Her chosen high school is out of our attendance area and because she has an IEP, she could easily be denied admission. And that’s just the beginning. Once there, there are a million considerations, things that could go wrong, requests that could be denied. We want her fully mainstreamed. We want her full-time aide from middle school to follow her. We want her to take the electives she wants to take — dance and drama — alongside her peers. I’m okay with retiring the cheer poms, but that’s about all I’ll concede at this point.

It feels like an extra tall order, particularly with talk in Washington, D.C. about dismantling special ed law and leaving it that way.

I caught wind of some interesting things about this special ed director, predicted a screaming phone call, and lost sleep last night. This morning I came into the office, shut my door, and gathered all the candles I could. I’m not woo woo as much as I am superstitious, and I decided it couldn’t hurt to make a little shrine. I added a photo of Sophie, a mug, and my favorite matchbox — which reads, “May the bridges I burn light the way” — lit the last match in the box, and waited for the phone to ring.

The phone call could not have gone better. Sophie can go to the high school of her choice, no problem. She’ll be mainstreamed. Within a couple hours I had a second call from the school’s special ed director, asking if it would be okay if Sophie missed a chunk of a school day to visit the high school for a tour? The director just needed to find the perfect student for her to shadow, she said.

“Okay,” I said, trying not to let my voice crack.

I am sentimental, but also cynical. I think I know why Sophie’s getting the red carpet treatment; I’ve put large hunks of her life, including her school experiences, on display and it doesn’t appear that I’m going to stop any time soon. But if this gives someone the chance to do the right thing — and continue to do it for other kids, after seeing how well it can go — I’m all for it. And truly, I’m grateful.

Transitions are hard on both kids and parents. The truth is, Sophie’s the one who has to do the really hard part, showing up at high school that first day, and every day after that. She’s excited for it, has been talking about it for months. She watches YouTube videos about high school wardrobes and make up, asks me every day if she will get to go to the school of her choice, the one where her elementary school friends are going. But still, I know she’ll be nervous. I know what can go wrong. If I do my job right, I’m her roadie, taking care of mini-disasters before they happen, arranging the best scenarios behind the scenes. There to catch her if she falls off the stage.

And totally unprepared and ill-equipped for the gig.

“High school’s a big transition,” both the administrators warned me this morning. “Yeah,” I replied. “I know.”

I hung up the phone after that second call and rubbed my eyes, realizing I had a headache and — perhaps related — that my office reeked from all the candles. I blew them out, choking on the smoke, but I think I’ll leave the shrine where I built it.

I have a feeling I’ll be needing it.

 

 

 

 


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Nobody Puts Sophie in the Cupboard

posted Monday January 9th, 2017

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I sobbed my way through three performances of Beauty and the Beast this weekend.

“WHO ARE YOU?” my friend Trish asked as I wiped away tears yesterday afternoon. The curtain hadn’t even gone up yet.

“I don’t know,” I said, sniffling loudly then flipping her off to confirm I’m still me, still the asshole she’s always known and loved.

Beauty and the Beast has never been one of my favorites — I’ve always found the talking dishware annoying, thought the story extra trite — and while I’m at it, I might as well admit that I really don’t care much for community theater in general.

But I’d watch Detour Company Theatre do any show, any time. And after this weekend, I can’t get enough Beauty and the Beast.

This theater troupe is comprised solely of adults with developmental disabilities (and a few other challenges), but when there’s a role for a kid, the director drops the age limit, which is how Sophie came to play the youngest Fiona in Shrek, and one of the children in South Pacific. “I would never cast one of our adults as a child,” Sam told me the other day. She doesn’t want to infantilize someone who already doesn’t get their due from the world. That’s just one of the reasons I love her.

I didn’t always love Detour. There was a really long time — both before Sophie was born and after — when I wouldn’t even consider watching this group perform, people who used wheelchairs and had trouble speaking clearly, who needed coaches on stage to guide them — sometimes through the simplest motions. People with a variety of diagnoses in various shapes and sizes. People like Sophie.

The people you don’t see on Broadway or in the movies, people you don’t even see in community theater. Not much, anyway.

Not enough, I’ve decided.

That’s why, even though I’m not a fan of the play or the movie or the music or the story, I was thrilled when Sam (no last name, just Sam) cast Sophie as “Chip,” the little tea cup, in Beauty and the Beast, which finished its run yesterday on the big stage at Scottsdale Center for the Arts. I knew I’d change my mind about the show; I always change my mind about Sam’s shows.

By the end, I was cooing over Belle — who among us can’t relate to a nerdy girl who loves books?! — and of course I’d fallen hard for the dishes, including Sophie. One of my favorite parts of Detour is how Sam works to make the message of the particular production relate to the members of her cast. For example, past productions of “Hairspray” and “Shrek” offered perfect opportunities for gentle lessons about celebrating people who are different, about looking beyond outward appearances, and “Beauty” offered that plus an extra lesson in kindness. Belle has to learn to be kind to the Beast, and he to her.

Watching the production this weekend, I was struck by how kind the coaches are to the actors, and even more so how kind the actors are to one another — patiently waiting for a fellow cast member struggling with a line, reaching out a hand to soothe a frayed nerve, offering a hug at the end of a show stopping number. Sophie came home with notes, gifts, flowers — and several crushes.

Of course there’s a catch.

At the very end of the play, after Belle professes her love for the Beast and he is magically transformed back into the Prince, Chip turns to Mrs. Potts and asks, “Are they gonna live happily ever after, Mama?”

“Of course, my dear. Of course,” Mrs. Potts replies.

Chip looks puzzled, then asks, “Do I still have to sleep in the cupboard?”

And everyone laughs. Except me. That line really gets me because yeah, well, kind of.

Most of these people, that beautiful cast, are back in the cupboard today. There’s a party later this week and soon Sam will begin work on the next Detour production, but for too many, I fear, Detour is their one and only truly meaningful activity. Most won’t move on to perform with other theater companies. Some have day jobs, but I wonder how much bliss they take from them? I don’t know much about their daily lives; for the most part it’s not appropriate to ask. Sometimes I’m afraid to know.

I get that for any of us, our time onstage — our moment in the sun, to do what we truly love and to thunderous applause — is limited at best. But it’s so much tougher for someone with an intellectual disability to find that magic. Sam packs several dozen actors on stage at a time, and even at that, I’m sure there are scores of others in metro Phoenix who would love the opportunity. Programs like this are too rare (I’d argue that Detour is one of a kind, but I know there are similar theater troops here and elsewhere) and it takes more than just a program, no matter how good it is.

As Sophie enters her teen years I’m just beginning to realize how hard it is to find meaningful ways to include people with intellectual disabilities in the arts as they grow older. It has to happen beyond a troupe of people with disabilities. It has to be about making opportunities, integrating classes and camps, accepting and learning, making mistakes and pushing past fears.

It won’t always be Broadway-perfect. And that’s more than okay.

 

 

 

 


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All I Want for Christmas

posted Saturday December 24th, 2016

 

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Sophie is terrified of Santa Claus.

Either that, or she’s completely full of shit.

We’re less than a day out from Christmas, and I’m no closer to knowing the truth than I was the day after Thanksgiving. Yesterday we drove around visiting friends — exchanging gifts, admiring trees, sipping festive beverages — and Sophie talked non-stop about her birthday party.

Her birthday is in May. She’ll be 14 — and that might have something to do with it.

In the letter she finally decided to write (well, text) she asked Santa for “pads for my face and pads for my period” and she keeps asking if Santa knows she is a woman.

That makes me laugh (behind my hand, I don’t let her see) but I wonder if Sophie is less afraid of Santa and more worried about growing up? She’s embraced puberty with such gusto, it’s hard to imagine. But I don’t have an explanation for this anxiety. She’s a control freak and she knows I love Christmas — it could simply be that.

Or it could be that she really is afraid of a creepy old man sneaking into her bedroom. (Trust me, we assure her every year that he’ll stick to the fireplace area and there’s never been evidence to the contrary.)

I worry that it might be more, and clearly I’m not equipped to address it.

Last night I came home from one last trip to Target to two weeping girls. Annabelle, I get. “Christmas is almost over!” she said, the tears spilling. I feel the same way, preparing days in advance for the inevitable letdown of December 26.

But Sophie’s clearly counting the days till Christmas is over — turning off the holiday music, not even interested (much) in gifts — and as a person who makes holiday terrariums and freaked when I saw that Target was selling Hershey kisses that look like Santa hats — I can’t relate to that at all.

I’ve got one more day to shake some holiday spirit into her, and I intend to try. Hard.

As for me? All I want for Christmas is a peek inside that kid’s brain.

 

 

 


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Let’s Stick a Fork in the Term Mental Retardation

posted Friday December 16th, 2016

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The other day I took Annabelle, Sophie’s big sister, to a doctor appointment at Phoenix Children’s Hospital. The doctor recommended a flu shot and, glancing at the consent form, I noticed the term “mental retardation.”

In 2016.

Look, I get that in the scheme of things this is not a big deal. Frankly, I’d rather we all run around calling each other retarded at the top of our lungs than endure the news of another Trump cabinet appointee. But we’re stuck with him (it appears) and we’re stuck with the stigma associated with a term that used to be a perfectly acceptable medical descriptor — and no longer is.

The federal government has done away with the term mental retardation. So has the state of Arizona, which means it really must be offensive if the legislature in my backward home state took note. The DSM has changed the acceptable terminology.

And yet, I see it often. A few weeks ago, it popped up on a form at Camelback Pediatrics, the practice we’ve always used.

Camelback Pediatrics has updated that form since our visit. An official from Phoenix Children’s Hospital emailed yesterday to say they are reviewing all their medical forms; the one I saw was outdated, she said.

Good. I fucking hate being the word police. I’m a First Amendment fan, both personally and professionally. But this is such a small thing, not using the term mental retardation, in such a big mess of a world. More and more these days, I’m finding it’s the little things — scratch ‘n sniff stickers at Trader Joe’s, glittered M&Ms at Target, a cuddle with my poodle, Sophie’s Santa letter — that gets me through the day. Someone thoughtful enough to use the term intellectually disabled, if only because they know it will make me feel better.

Now more than ever, words matter. At the risk of sounding melodramatic, sometimes they’re all we have.

The National Center on Disability and Journalism has a useful style guide if you’re wondering about other words.

Image of Sophie by Monica Aissa Martinez. 

 

 

 

 


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Dear administrators, teachers, and staff:

Before I say anything else, thank you.

Thank you for creating an incredible environment for my daughter. Two and a half years ago, I sat in the audience at Sophie’s fifth grade graduation and sobbed, convinced her education (both academic and social) had come to a halt, that we’d never find such a nurturing and inclusive environment for a kid with Down syndrome in a junior high setting.

We’d had a rough time finding a middle school — every one from the charter her older sister attends to the public junior high across the street from our elementary school had made it clear that Sophie was not welcome.

Not only did your school welcome Sophie, your arms were open and have remained so. I am already stocking up on Kleenex for the eighth grade graduation ceremony.

Sophie is a cheerleader. The school has started a Best Buddies program and soon, Special Olympics. She is a homeroom rep for Student Government. She is in honor choir and can’t wait for end-of-the-year trip to Disneyland. She is fully mainstreamed in the classroom and on campus she knows everyone from the school cop to the school nurse. She’s even made a couple friends.

To me, it’s no surprise (although on a political level it’s a little concerning — a battle for another day) that your school’s mascot is the Crusader. In the last couple years I have watched Sophie become her own best advocate, fighting for what she wants, crusading for her causes. You always listen, which I love.

I fully recognize that her requests are often not appropriate. I’m not writing to you today to ask you to abolish the school’s dress code or to let Sophie into the college-prep program (although I see her point in both cases). But I will feel as though I’ve failed both as a parent and a community member if I don’t once again mention another cause that’s nagged at me for years now. You’ve all heard both Sophie and me rail on this already.

Here goes:

Sophie wants to take drama as an elective. It is not currently offered at her school, has not been her entire time there.

True, there have been attempts. There was an after-school drama club. In my estimation, it did not go well. Last year Sophie took “musical theater,” and that was worse. I cringed at the year-end concert, watching my daughter sing along to a karaoke machine. I’m not asking for a lot in the way of instruction, but that was definitely a low point of our time at the school.

There’s a solution to this drama thing, and it’s literally in the school’s backyard.

Drama is offered as an elective at the gifted academy housed on the same campus as the general ed public school Sophie attends. There are other electives, as well, all open exclusively to the gifted students.

And yet the gifted students are allowed to take any general ed elective they choose.

Like I said, this has nagged me for years. It’s a pretty well-kept secret. I never would have learned of it if Sophie hadn’t told me. In fact, as it turned out, she had been cornering the gifted academy’s principal at lunch for weeks already, asking him to let her take drama. This was followed by my own request, which I took up the ladder to the superintendent.

I never really got an answer, which I suppose was my answer. But I’m here today to ask again.

I don’t just want Sophie to be able to take drama at the gifted academy. I want you to tear down that wall and open all electives to all students on this small campus. There are so many good reasons to do it, reasons that would benefit all the children.

Look, I’m not asking you to let all the kids take the same math class. And I understand the value of having a prestigious gifted school on campus — it’s a way to keep parents from sending their kids to charter schools, for one thing.

I get it.

But there are other things I get, too. When this issue first came up, I talked to a kid from the gifted academy about it. He had taken drama. “Hey, what would happen if the general ed kids were able to take drama at the gifted academy?” I asked.

He didn’t hesitate. “Those kids are so poorly behaved,” he said. “It would be terrible.”

I haven’t crunched the numbers, I’m not sure they are even available to me in the breakdown I’d need them, but anecdotal evidence tells me that the two schools have very different demographics, both racially and economically. (By the way, I do know that the gifted academy has enrolled a few kids with special needs and that’s awesome, but it doesn’t affect this argument.)

This is not an issue about special education, or about Sophie. This is a matter of civil rights and it affects every kid on both campuses.

Speaking of special education, something really amazing happened this year. Sophie’s school DID start offering a drama class on campus — exclusively to special ed students. That, along with other changes I’ve seen and heard about, such as kids with IEPs being more fully included in academic settings — is wonderful. I’m so happy to see kids with special needs receive more programming.

But here’s where it’s left you:

You have a drama class for the gifted kids. You have a drama class for the kids in special education. And you have nothing in between.

What you have is segregation. In drama. One of the few places where you could do some freaking amazing inclusion! What are you people thinking?

I get that this is the least of your worries in this current political climate. I get that Sophie and I are a pain in the butt. But just imagine, what if you blew things up next semester and opened your drama class to ALL kids. Put the gifted kids in with the kids from the self-contained special needs classroom. Toss some kids in from the general population. Dream big!!!

I know what you are thinking. “Dream on, lady.” Okay, I will. And I will push for change.

Please let me know if there’s anything I can do to assist you. And again, thank you.


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The Year Without a Santa Claus?

posted Friday December 2nd, 2016

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The girls spent the night at my mom’s house on Thanksgiving. I took the opportunity Friday morning to drag all the bins marked XMAS out of the holiday closet  and burn new copies of my favorite holiday music mixes so that we’d ready to start celebrating as soon as possible.

“Oh no. No Christmas music,” Sophie said when she got in the car later that day.

“C’mon, it’s after Thanksgiving,” I said. Sophie is a rule follower and even though she’s always been a big fan of Christmas, she understands that it has its time and place — from the day after Thanksgiving through New Year’s Eve. Once in a while I’ll catch her watching “Elf” in the summer, but for the most part she obeys the edict. And has always been eager to unveil the holiday goods on the appropriate day.

Not this year.

“It’s too soon! We just had Thanksgiving! Take a break,” she said, leaning over to switch off the CD player.

A week later, the XMAS bins are still sitting in the living room, unpacked, under a similar quarantine. I’m afraid to bring up the topic of a tree.

We’ve had Christmas issues in the past. For as long as I can remember, Sophie has worried about Santa coming into her bedroom. (The Tooth Fairy, Easter Bunny and Leprechan also raise similar — and I say understandable — fears, fears typically assuaged with a note relegating them all to the vicinity of the fireplace.) Sophie claims she still believes in Santa, but has cooled on the whole letter-writing front. This year I told her no list without a letter — it seems rude — and she was silent for several days, then announced she’d write Santa a letter, but she preferred to text it, so could I please find his phone number. She texted me the draft of her list.

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I looked at the list and wondered if the collision of puberty and make-believe is too much for her. I mean, Santa can’t get many requests for feminine hygiene products. I made a mental note to add “Bra Night” to “Sock Night” and “Underwear Night” when Hanukkah rolls around.

But what about Christmas? I love Christmas. It’s one of the few things Ray and I actually agree upon, although I often catch him rolling his eyes this time of year, as I haul giant sacks of flour into the house for cookies and fill the fridge with homemade egg nog. Annabelle loves it, too. And Sophie – well, you might know the stereotype. People with Down syndrome love Christmas!

Not Sophie. Maybe not, anyway.

I’ve tried to ask her what’s up. She’s mum on the subject.

It could be as simple as a desire to be in control. Sophie knows how desperate I am to unpack those bins and hang the stockings, put up the handmade mistletoe and decorate the mantle. Maybe she’s just holding me back because she can. Maybe she’s afraid of Santa. Maybe she’s taking her Jewish roots seriously after her bat mitzvah (highly unlikely).

Or maybe, as she told me the other day, she really does hate Christmas.

Annabelle has been dispatched to get to the bottom of this whole Christmas-hating thing — I’m hoping she’ll report back soon.

I had a glimmer of hope this morning as we were driving to school. “You can put on the Christmas mix,” Sophie said, grudgingly.

“You don’t have to ask me twice!” I said, popping it into the CD player and filling the car with Ingrid Michaelson’s version of “Have Yourself a Merry Little Christmas.”

Out of the corner of my eye, I saw Sophie singing along to my favorite Christmas carol. I smiled. Maybe tonight I’ll try putting out the holiday dish towels.


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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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