Party Hat

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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Party Hat

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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Party Hat

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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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Party Hat

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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Party Hat

Gratitude Mix

posted Wednesday November 23rd, 2016

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I decided to make a mix tape for Thanksgiving, a gratitude mix. I started off with “Thank You Friends” by Big Star and had every intention of including other simple expressions of thanks — a fun play list for cocktail hour tomorrow — when things went south.

Like, with the second song.

I landed on R.E.M.’s “It’s the End of the World As We Know It” and didn’t look back. Suddenly my mix was looking less like an appetizer and more like an apocalypse. By the time I was done, I’d run the gamut — thanks, doomsday, anthems, a few love songs, more doomsday, a few more love songs, some gloom, and finally a feeble attempt to return to the theme.

I looked at the list and realized it was a pretty good catalogue of 2016. It’s been a year, right?

Now I will make a confession that might make me wildly unpopular on social media as it stands today (which is to say, who knew the internet could get so hostile, particularly among likeminded friends?) but I’m going to say it.

It’s been the best year of my life.

In many important ways it’s been a shitty one, make no mistake. But one thing I’ve learned in my relative old age, in this, my 50th year, is that both things can exist at once. It can be the best year and a shitty year.

The other night I crawled into bed after looking at Facebook for too long (as in, more than 15 seconds) and tried to breath. I feel like if I don’t focus on this scrolling, constantly refreshing real-life horror story, don’t really take the concerns seriously, that somehow the worst case scenarios will come to pass — sort of how I feel like I need to concentrate hard when the plane is taking off, clutching the arm rest, focusing all my energy to make sure that plane stays in the air, that it keeps pointing up.

Because I have no idea how the plane stays in the air.

Or how we do. How do we stay in the air? Not by looking at Facebook, not now.

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And yet Facebook is where, a few years ago, I met Heather Rowe. The other day I posted a photo of Sophie on her half birthday (she demanded a candle in her buttered crumpet and actually allowed me to snap a picture) and Heather — who lives on the other side of the country, also has a kid with Down syndrome, and is struggling like the rest of us to figure out what to do and think and be these days — posted a portrait of Sophie. She drew it on her iPhone, she’s been posting these images, she calls it #arttherapy.

I won’t stop looking at Facebook, I won’t stop posting, I will send Heather a copy of my gratitude mix.

This year has been tough, and not just because of Donald Trump. I’ve had some really serious work challenges that have forced me to act like a grown up, and I hate acting like a grown up. Sophie is sitting on the precipice of high school — an empty pool we’re about to dive in, with testing (or the eschewing of), tours, and lots of tough questions. I feel the weight of that on me like a rock on my forehead, boring down on my eye sockets. I feel the security we worked so hard for in junior high ready to slip away, feel things about to get harder and harder and harder for Sophie.

Then there’s my sweet, wise, beautiful Annabelle, who was diagnosed this year with juvenile arthritis. She’s okay (knock on wood — hard) but it was a terrible summer, the worst. I watched my girl respond with more grace and maturity than I could ever have imagined. Early on Election Night, before the returns came in, I watched her perform in a school recital, dancing on pointe for the first time since her diagnosis. It was one of the bravest, best things I’ve seen in my life.

The next morning she stumbled out of her room, looked at my panicked face, and asked, “Mom, is Donald Trump president?”

So yeah, 2016 has been a mixed bag. And then there have been the joy-soaked moments, big and small. We did some remodeling and I NOW HAVE A LAUNDRY ROOM. My oldest, dearest friend and I went to Cuba for a week; we took a family cruise to Canada; Annabelle and I snuck off together to Seattle for a weekend. Sophie cheered and acted and got a ukelele. I watched Annabelle perform her first gig (on the bass!) with her first band. Ray got really good tickets for Elvis Costello. I got to assign, edit and publish stories by some of my favorite writers in New Times, continue our beloved Bar Flies reading series, and co-taught Mothers Who Write for the fifteenth year. My best friends threw me the best party ever for my 50th birthday — complete with a cake walk. And in early November, we wrapped a year of study and preparation with a b’not mitzvah (that means for two girls) for Annabelle and Sophie that marked their coming of age (Sophie is super excited to be a WOMAN!) and included family and friends from near and far.

As I type this, the girls are sleeping at my mom’s house with their beloved cousins — my sister and her family are in town for the holiday — and I’m sitting at my laptop at the kitchen table with a Momofuku-inspired pork roasting in the oven. Ray is sitting here with me, practicing Christmas songs on his acoustic guitar. There’s a standard poodle at my feet.

I am so spoiled, so humbled, so grateful. And a little exhausted.

I wrote a book, and it was published this year. No, it’s not a bestseller (except for about 30 seconds in an obscure category on Amazon) but it’s been well-received. The outpouring of support and love from friends, family, strangers, journalists, and members of the Down syndrome community — a community where I finally feel I really belong — has been more than I ever could have hoped for. I have made meaningful connections with writers and families. Most important to me, the person to whom the book is dedicated — Ray — says he loved the book. And he doesn’t lie, he doesn’t even fib. As I enter the second half of my century, I feel like I have a foundation, both personally and professionally.

I feel like the Grinch — my heart has grown three sizes this year. Even Donald Trump can’t stop that.

In my mid-40s, I made a list of 50 Things to Do Before I Turn 50. I got to 31 or 32, depending on how you look at it, so more than half — meh. But I feel like this year, I finally nailed the last one:

Live in the moment.

More than anything, I’m today to here to say that I’m grateful for you. Thank you for reading this little blog, for being with me in the moment. Have a wonderful Thanksgiving feast tomorrow and if you’re worried about disparate views, make my mix (or, better yet, your own!) and blast it right over your guests. You’re welcome.

Amy’s 2016 Gratitude Mix

Thank You Friends * Big Star

It’s the End of the World As We Know It (And I Feel Fine) * R.E.M.

Waiting For The End Of The World * Elvis Costello

Water Fountain * Tune-Yards

Our House * Madness

Race for the Prize * The Flaming Lips

Hallelujah * Leonard Cohen

Rise Up * Andra Day

Brave * Sara Bareilles

Firework * Katy Perry

Seventeen * Sjowgren

Grow * Frances

Not Today * twenty one pilots

Strawberries * Why?

For Once in My Life * Stevie Wonder

My Love * Paul McCartney & Wings

And So It Goes * Billy Joel

Over the Rainbow * Ingrid Michaelson

Thanksgiving Theme * Vince Guaraldi Trio


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Happiness is… Jo Ann Briseno’s Napkin Art

posted Thursday November 10th, 2016

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I’m not sure when I first noticed Jo Ann Briseno’s art, when we first became friends on Facebook or when I found her on Instagram. I only know that I was captivated by her drawings, so simple in black pen on white paper napkins, a near-daily love letter left in her daughter’s lunch box. I learned that Briseno lives in metro Phoenix and that her daughter Maya, now 9, has Down syndrome. And then I learned so much more by following her drawings. We met earlier this year and I practically squealed (okay, maybe I did actually squeal) when she wrote to tell me her work was going to be shown for the first time.

The show is at The Millet House Gallery, 440 W. 1st Street in Mesa. The opening reception is Friday, Nov. 11, from 6 to 10 pm. Briseno was kind enough to ask me to read — Sophie and I will be there. I can’t wait.  (And if you can’t make it tomorrow night, the show will be up through mid-January. Details at themillethouse.com and showings by appointment, themillethouse@gmail.com.) I asked Briseno to tell me about her work in her own words:

The story of Happiness is…

My lunch box drawings started as a way to connect with Maya while she was at school.  About midway into her kindergarten year, I thought, “Wouldn’t it be fun do a little drawing on a napkin and stick it in her lunchbox every day.”  I didn’t expect them to return to me.  I figured they would get used and thrown away in the lunch room.  Maya’s teacher and aide saw the sketches and thought they were amazing.  They put them aside for her as she ate and then would put them back in the lunch box to return home. They were the first people to think of as them as art.

As a mother to a child with special need I didn’t have the time I wanted to devote to creating my art. I saw the lunch box napkins as an opportunity to practice the skill of drawing. 

Every morning while she is eating breakfast before school, I challenge myself by creating a little work of art for Maya in 10-15 mins. 

At first the drawings were just happy notes to stay connected to Maya and let her know I was there. Over time they have evolved into stories of Maya. I wanted to celebrate her milestones and began to call this series,  “Happiness is…” 

Milestones for parents of special needs children are pivotal points of development. Yet I didn’t want to label them as milestones because they are more than that.  They are the moments in life that matter most. They are happiness.

For me, “Happiness is…” the little things in her life that others might take for granted, like drinking out of an open cup, jumping with both feet, or going on a play date with a friend. I never want to forget these moments that are what make her who she is.

While my first love is photography I love drawing with a pen. It’s unforgiving and pushes me to let go of my fears about not being perfect. My drawings aren’t perfect just like my life.

As an artist I think we are challenged to make something that is thought provoking.  I do also believe that art can be something which brings awareness and at the same time happiness to the viewer. As simple as a little girl swinging on a swing, these drawing can reach may depths. Life is beautiful within all the hardships. There is beauty in every day actions.

I didn’t know that I would be doing these for years. I’ve come to realize that they are a way for me to create my art, they are a way to express myself as all artist need to do.  I’ve learned so much from these drawings. In many ways Maya’s voice is in my sketches and at the same time I have found my own voice as an artist.

See more of Jo Ann Briseno’s art on Instagram: @evrfwd


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Mapping Sophie

posted Thursday October 27th, 2016

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I don’t get out much — the editor’s lament — but this spring I made a point of inviting myself to artist Monica Aissa Martinez’s central Phoenix studio. She graciously agreed. I wanted to see up close how she maps people. It’s pretty literal, this mapping. The artist’s subjects aren’t exactly naked; it’s more of a BodyWorlds experience but so much more. I’d seen images of Martinez’s work — watched it evolve over the years — and I was captivated.

Our work is so different, and yet similar. From the time Sophie was very small, I’ve considered her parts while trying to make sense of the whole of her. On a cellular level, Sophie is different from Ray, Annabelle and me. And likely from you. That third 21st chromosome affects every bit of the matter that makes her — and impacts her from head to toe. In stripping away the skin and mapping what’s underneath, with particular attention to medical traits and conditions — as well as a few spiritual ones — Martinez does what I’ve been doing. Or at least what I’ve been trying to do. She completely kicks my ass on this stuff in the best ways.

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I’ve been wanting to write about the experience of visiting Martinez’s studio and what happened next, but for once I’m at a loss for words. She describes her work so much better than I ever could, and it’s all here on her blog. For my part, I’d rather tell you about it through her pictures. But first, I will need to offer some back story. I stopped by her studio in the spring, and Monica and her husband Eddie then came to my book launch. A little while later, she sent me a photo — my book, filled with sticky notes.

Martinez had decided that she wanted to map Sophie. I was thrilled. I stopped by again, this time with Sophie, who was enchanted by Monica and agreed to a photo session. As the summer went on, the artist shared pieces of her work on social media and in blog posts. It’s just gorgeous. One of the images made it onto the cover of the alternative newsweekly in Portland, Oregon, and I hope the work is eventually shown far and wide — it’s a terrific way to introduce the world to a person with Down syndrome, which has been my goal with my own work. Martinez did extensive research into many aspects of Down syndrome — particularly the heart, and the defect Sophie and many others have (complete A/V canal) and also included specific aspects of Sophie, like the space between her first and second toes, her fissured tongue and her love of paint brushes.

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As summer ended, Annabelle, Sophie and I visited the studio together, eating pizza with Monica and Eddie (they made sure to have cranberry juice for Sophie, that’s her favorite) as we admired the larger-than-life size piece in person.

As we left, Martinez remarked that she had a few finishing touches to add. But someday soon, if not already, she’ll be completely done with this map of Sophie. I hope you get to see it.

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My work is far from over. Every day, the landscape of this life, of this little being, shifts. Capturing it on paper is a challenge and a joy.

Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published by Woodbine House this spring and is available through Amazon and Changing Hands Bookstore. For information about tour dates and other events visit myheartcantevenbelieveit.com and here’s a book trailer.


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Party Hat

Dutch Treat?

posted Thursday October 6th, 2016

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October is Down syndrome Awareness Month, so my Facebook feed is full of beautiful photos of kids with DS and wonderful explanations of Down syndrome. Lots of people are posting a popular short essay called “Welcome to Holland.” I’ll be honest. It’s not my favorite. Here’s why, in an excerpt from “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” published this spring by Woodbine House.

Years ago, I interviewed a pediatric neurologist in Phoenix for a story I was writing about autism. He was a gentle older man confounded by the fact that the rate of diagnosis was rising; in contrast, my story was about parents who resist a diagnosis, who are in denial.

Before we dug into science and statistics, I explained to the doctor that I was intrigued by the way autism was diagnosed because I had a young daughter with Down syndrome—a question answered with a blood test at birth (or a diagnosis before that, even) as opposed to the never-ending questions surrounding an autism label. Autism can’t be diagnosed with a blood test, and not prenatally at all, and symptoms typically don’t appear or aren’t noted until the child is two or older.

And then actually testing for autism is a tricky proposition. In many ways, it’s like pornography—the medical profession knows it when it sees it. That’s not good enough for some parents, understandably.

It’s a tricky, complicated subject, and, at the time I was writing the story, it was frankly a welcome relief from thinking about Down syndrome 24/7. I didn’t mean to make Sophie more than a passing reference in my conversation with this busy physician. But as soon as he heard “Down syndrome,” the doctor was up and out of his chair, rushing out of the room and returning with a grin and a typed sheet that had obviously been Xeroxed many times. The words were hard to read, tilted and worn.

No matter, I’d already read “Welcome to Holland.” I smiled and thanked him and tucked the paper inside my notebook, trying not to cringe visibly. The short passage was written by Sesame Street’s Emily Kingsley in 1987 about her son Jason, who was then thirteen.

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this,” she begins.

Then Kingsley shares a metaphor that will later be used in the title of books, published all over the place, Xeroxed repeatedly and handed to parents like me.

It’s like you’ve planned a trip to Italy, Kinsley writes – but instead wind up in Holland. It’s still beautiful, it’s still amazing, but it’s different, disconcerting at first.

“The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

“So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy.”

Kingsley concludes:

“If you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.”

I love Sesame Street, and I have nothing against Emily Kingsley. But I was never a fan of “Welcome to Holland.”

I’m sure many parents have found solace in what they see to be great insight. Not me. I’m not alone; in fact, there are entire online forums devoted to the hatred of this piece.

It’s sappy. It’s simplistic in a way that having a kid with disabilities is not and never will be, not for me anyway. And for a long time, I was still too hurt and angry for platitudes. Looking back now, I realize that part of what upset me was that it felt like this was all anyone was handing me – this comparison between these two places. I needed more.

Ray and I had been to both Italy and Holland before Sophie was born, and I didn’t need to be reminded of carefree trips to Europe at a time when I was quite sure my life had ended.

“You know, I’ve been to Amsterdam, and THIS IS NOT LIKE AMSTERDAM,” I said to Ray, waving the paper, gritting my teeth. “I don’t see hash bars or tulip fields or awesome flea markets in this scenario, do you?!”

He just made a face.

I knew I was supposed to fit into this new role as parent to a kid with a disability, but I didn’t know how to do that. Those moms were harried but tender, stoic and knowledgeable. They kept their hair short, drove light-colored mini vans, and always had a Wet Wipe ready. They were selfless, kind, and accepting. They did not wear make-up. I had the last one covered; other than that, I was fucked.

“You know, I’m not your typical special-needs mom,” I told a nanny candidate when Sophie was very young.

“Yeah, well, who is?” the confident young woman shot back—snarky but correct. I hired her, warily, and added my faux pas to a quickly growing list of things I was ashamed I’d said.

The truth is that I was watching my friends go somewhere while I was stuck someplace else, a place with medical scares, staring strangers, preschools that wouldn’t take my kid, sleepless nights worrying about her future—and mine.

I was drowning and I needed help.

(Gorgeous artwork above by the incredibly talented Monica Aissa Martinez. This is Sophie’s karyotype. Monica “mapped” Sophie this summer. More on that soon.) 


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Party Hat

“I have Down syndrome,” she Snapchatted the boy.

posted Wednesday September 28th, 2016

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Sophie and I got our nails done on Saturday. Hers never take as long as mine so after she’d finished, she parked herself at the front desk of the salon and flirted with the young man who books appointments; he helped her download Pokemon Go and they exchanged Snapchat handles. As we walked to Trader Joe’s afterward, she casually told me she sent him a message on Snapchat:  “I have Down syndrome.”

I didn’t know what to say, so I just smiled and nodded.

Later, over Chinese dumplings, I asked if she’d heard back from her friend. No. She didn’t seem too concerned.

“It was a Snapchat, Mom,” she said in her best annoyed teen voice. Apparently a Snapchat does not require a response.

“So, he doesn’t know you have Down syndrome?” I asked her.

“No.”

“Oh. Who does know?”

She rattled off a list: me, her dad, her sister, her best friend since kindergarten, her nanny.

“Do your teachers know?”

“No.” She shook her head. “They don’t know.”

“How about Mrs. Wright?” I asked. Mrs. Wright is her aide.

“Yes. She knows. Tatum knows.” Tatum is her friend and classmate; she also has Down syndrome.

Eventually one of us changed the subject. It hasn’t come up again, but it’s been days and I can’t stop thinking about it.

Who knows? Who doesn’t? Does it matter? Does it matter that Sophie thinks people who do know don’t know?

Her teachers know. I’m sure of that. But — random people on the street? Do they know? Her classmates? What about the other kids at ballet class? We go days without talking about it and sometimes even I forget, for a while at least.  Then the clerk at Safeway looks knowingly at Sophie and mentions that she takes care of her sister.

Sophie’s in a blurry place, moving from kid to adult (“I’m a woman!” she tells me often) but still childlike in so many ways. Maybe. Maybe not everyone notices? Children don’t, not always. Just yesterday a friend messaged me about a conversation she had with her daughter. “[We] were reading a book on Helen Keller last night, which turned into one of our many conversations about how it’s totally cool to be different. So I asked [my daughter] about Sophie, asked if she noticed anything different about her. She said yes. “Sophie could do splits in high heels.” And that was that. She also said she wants to have a playdate with Sophie and Annabelle again.”

That’s awesome — I laughed and cried — but my friend’s daughter is 6. What about the grown up world, particularly now that Sophie’s growing up?

I’ve always felt that as far as challenges go, it’s a lot easier to have something that can be definitively diagnosed. Blood test, boom, she’s got it. Okay, now what? As opposed to, well, ma’am, it appears that your kid has (fill in the blank) but we’ll never know for sure. And we don’t know what you can expect.

Now that I think about it, though, I’ve only considered it from the parent’s perspective. What about the kid?

“I don’t want to have Down syndrome,” Sophie tells me from time to time, and I can feel the weight of that label on her shoulders. She said it again on Saturday night, over those dumplings.

“What don’t you like about it?” I asked, probing a bit deeper than I have in the past.

“I don’t know,” she said, dipping her head shyly.

“Does it make school harder?”

“Yes.”

“Does it make it harder to make friends?”

“No, that’s easier.”

That answer took my breath away. So matter of fact and so freaking deep — she realizes on some level that it’s easier for her to talk to people because the composition of each cell that makes up her being is different from mine. “It doesn’t make it easier for her to keep friends,” Ray said when I told him about it later. He’s right.

Sophie does not want to be defined by her diagnosis. I know that, we’ve talked about it. And yet she’s sharing it with people she meets. This is new, obviously a developmental stage, and one that has thrown me off balance.

Luckily, I’ve learned to let Sophie be my guide.

(Photo credit: Sophie.)

Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published by Woodbine House this spring and is available through Amazon and Changing Hands Bookstore. For information about tour dates and other events visit myheartcantevenbelieveit.com and here’s a book trailer.


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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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