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Maya was my first real friend who also happened to have a kid with Down syndrome, made difficult but not impossible by the fact that she lived on the other side of the country. And we’d never met.

We found one another’s blogs many years ago, when our kids (her son, my daughter) were barely past the toddler stage (which, remember, happens a little later with kids with Down syndrome). This summer, Leo turns 13. Sophie is 14. And yes, we’ve spent a lot of time texting, emailing, and commenting on one another’s blogs (she calls it “blogging on your blog”) about our kids, about what it means to have an intellectual disability in a world that expects perfection.

But life is never about just one thing, even if that thing looms large and important and keeps you up nights. Maya and I have spent just as much time discussing the relative merits of the musical Rent, and our shared obsession with E.B. White, as we have Down syndrome. Also: how to make a rainbow layer cake. When I mentioned years ago that Sophie’s older sister Annabelle was making a zoetrope for the school science fair, Maya took note and a few days later, a book about zoetropes — written by Maya’s dad! — arrived in the mail. I’ve sent her the girls’ hand-me-downs, particularly if they include rick rack trim (a shared obsession).

Even when we’ve gone months without speaking — life gets in the way — I love knowing Maya’s there, that I can text her about an issue Sophie’s having with friends or a question about where she found bottle brush trees in that photo on Instagram (we are both Jewish but both love Christmas).

Having a kid with Down syndrome shakes the normal out of your life. Having a friend like Maya helps to put it back in.

Maya and I went to the same grad school, studied the same thing, had a lot of the same aspirations. We both went into journalism. We both dreamed of living in New York City. I ran screaming home to Arizona a couple days after graduation. She stayed, and eventually we both settled in the suburbs — although from hers, on one tall hill, you can actually catch a view of Manhattan.

I got to see that view earlier this month, when I took the train out to New Jersey for the afternoon. Maya and I had met a couple of times over the years, but never on home turf. Earlier in the week I’d hunted down the house on the Upper East Side of Manhattan that supposedly offered inspiration for the book “Harriet the Spy,” and this felt a tiny bit like that. I had context, I could now picture Maya in the kitchen making that rainbow layer cake.

And I got to attend the 4th Grade New Jersey Fair at Leo’s younger sister Ellie’s school. Each of the kids dressed up like a native New Jerseyite (there was Bruce Willis, Buddy from Carlo’s Bakery, even a tiny Dorothy Parker complete with pearls and a flask!) and Ellie chose Judy Blume, a particular moment of pride for her mom.

“Oh look, I think she’s wearing a shirt from you,” Maya stage whispered as we took our seats to hear the kids sing. Afterward, as Maya had promised, there was a cake shaped like the state of New Jersey. We cracked up. We also took a walk in a beautiful nature preserve — one of Maya’s favorite spots — and talked about family and our kids and how scared we are about the future. I remember when we met and we’d sweat over kindergarten placement or physical challenges, and parents of older kids would say, “Just wait.” I get what they mean. The ante is upped. In fundamental ways, things are not getting easier as the kids are getting older. I’m grateful to know Maya’s there, just a text away.

And equally grateful to know that she’s there for the rest of the stuff, too — for what it’s like to raise “typical” kids, to discuss kitchen cabinet color choices and vegetable gardens and peonies and everything else in between.


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Listen to Each Other’s Stories

posted Thursday June 29th, 2017

 

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A couple of things are clear. Eventually, the U.S. Senate will vote on so-called health care reform. And it won’t be pretty. Maybe it won’t be as bad as we think, maybe they won’t cut 22 million people from the rolls. Or maybe it will be worse. I write a lot about Down syndrome, but this post is not about that (although really, it’s about every person — including Sophie — who has a pre-existing condition). Today my friend and long time Mothers Who Write workshop student Noan has given me permission to publish a post she shared on Facebook earlier this week. Take a look. Call or write your senator, if that’s your thing. Put names and faces and unforgettable stories out there. They need to be out there. As Noan wrote, “I told [the senators]  I thought the surest path towards understanding and compromise is to listen to each other’s stories. I asked them to please take the time to listen to mine.”

Here is hers. 

Bedtime

I would place the first three medications on a brightly colored plastic plate, then set the plate down on the couch in front of the TV and holler, “Elizabeth, come do your plate.” As she got older, I would frequently recite the purpose of these treatments. “First, do the Ventolin and the Advair to open up your airways. Next, the Flutter device to get you coughing. Coughing is good for you because it moves the mucus out of your airways. And always do TOBI (inhaled tobramycin) last. TOBI is an antibiotic- it fights infection – so you want to breathe it as deep into your lungs as possible.”

My youngest daughter, Elizabeth, has cystic fibrosis. Elizabeth was diagnosed with CF at the age of four months, so for as long as she can remember her bedtime routine has included a series of medical treatments. Every evening, while she and her sister watched their favorite TV shows, Elizabeth did her nightly breathing treatments. And while she was doing her breathing treatments, my husband or I would set up her feeding pump.

When she was eleven years old, Elizabeth had a g-tube (gastrostomy tube) placed into her stomach so she could do nighttime enteral tube feedings. She was tired of feeling tired, she was tired of not growing and as she told me at the time, she was tired of being “that skinny girl.” She had me glue decorative crystals onto her g-tube – the soft, plastic button protruding from her stomach. She wanted to look cute when she wore her bikini on the beach. And she did.

Once evening breathing treatments were done and she was hooked up to her feeding pump, Elizabeth would prick her finger and we would check her blood sugar levels. Then she would take the remaining medications I’d laid out on a napkin on the kitchen counter – a syringe filled with insulin (to treat cystic fibrosis related diabetes), Actigal (to treat CF-related liver disease), oral antibiotics (to treat on-going sinus and respiratory infections), a handful of digestive enzymes (to treat pancreatic insufficiency) and half a cup of magnesium citrate (to treat intestinal blockages).

When Elizabeth was healthy, these were the treatments she did. For her, they were as routine as brushing her teeth before bed. They were squeezed into a childhood filled with sleepovers and softball games, doctor appointments and hospitalizations, cello lessons and prom dates.

Elizabeth is 25 years old now and living in a distant city. I recently spoke with her on the phone. She was with a new boyfriend, visiting his family’s horse ranch. “So, you like this new boyfriend?” I asked.

Yes, she said.

Is he there right now?

Uh-huh.

Okay, so just say a number. On a scale of 1 to 10 – how much do you like him?

Nine, she said.

Before she hung up, I asked her what she remembers about bedtime in our house. We would always read, she said, and then you would tuck me in and you would say that cute rhyme: All tucked in and roasty toasty / Blow me a kiss good night / Close your eyes ‘til morning comes / Happy dreams and sleep tight.

 


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A Midnight Summer’s Dream Come True

posted Tuesday May 2nd, 2017

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The reviews are in for this morning’s eighth grade production of “A Midsummer Night’s Dream,” or, as Sophie kept calling it all semester, “A Midnight Summer’s Dream.”

The production was nothing fancy, held in the library of the public middle school Sophie attends, during first hour drama class. Costumes were makeshift, sets pretty much didn’t exist; there was fidgeting, giggling, and a few forgotten lines. Later I’ll have to google to be reminded of the plot.

It was, without a doubt, the finest piece of theater I’ve ever seen.

Sophie played Hermia, a nice meaty role, and my favorite part of her performance was that she was no better or worse than her peers. They didn’t ignore or coddle her; she was simply another member of the cast. After the show, Sophie sat with some other cast members and ate donut holes and I remarked that they were really including her.

Well, for the moment anyway, Ray replied.

I’ll take it.

As we waited for the play to begin, I looked around and breathed in my favorite library smells, remembering that we’d sat in this same space almost three years ago to the day, gathered for Sophie’s middle school transition meeting. I was so nervous that day, with a list of questions. I worried about what lunch would look like, would Sophie be safe when she walked around campus, would she be able to keep up in science, math and English classes aimed at typical kids?

It didn’t occur to me to worry about whether or not Sophie would be included in a drama class. But, in fact, it was Sophie who noticed halfway through the first semester of sixth grade that only the kids in the gifted academy on campus got to take drama.

She begged for weeks, until the principal of the gifted academy emailed politely to ask me to get her to stop. That only got me started. I complained for years, up the ladder to the superintendent. They started a drama club on campus (Sophie joined but was not included). They started a drama class for the kids in the self-contained special ed program (Sophie is not part of that program).

But as the last semester of middle school approached, there was still no drama class for kids in the general population — not for a kid like Sophie, but equally important, not for the vast number of kids who land in the middle.

In the final days before the holiday break, I got word that there would be a drama class beginning in January. Did Sophie want to sign up?

Today’s production was the result of that. It was absolutely terrific. Clearly the kids had each been pushed in a good way — not just onto the stage but into their own heads, to understand a farce about love so similar to the real-life drama they deal with every day. Each learned a whole lot of lines, and when a line was forgotten they were respectful and helpful to their cast mates. Including Sophie, who reciprocated.

This morning as I dropped her off for the show, I wished her luck, told her not to be nervous, and we exchanged a peck on the lips. She started to walk away, and I stopped her.

“Hey Sophie, do you know who made this happen?” I asked, fully expecting her to say “ME!” — which is the truth, this was all her, as is everything Sophie’s made happen for herself at this school

“US!” she said, grinning.

Hey, I’ll take it. I hear that kids at Sophie’s school are already showing interest in taking drama next year.


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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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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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Party Hat

 

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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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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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Party Hat

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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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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