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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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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“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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Would Someone Please Sit with My Kid at Lunch?

posted Tuesday September 20th, 2016

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The other night in the Target girls’ section, I noticed a campaign aimed at kindness. Tee shirts with sayings like “Come Sit With Us” and “Kind is Cool.”

I smirked. If only it was that easy.

In my world — rather, in my daughter Sophie’s world — too often it’s Homecoming Queen or nothing. This is the time of year that my Facebook feed fills up with feel-good stories about boys and girls with special needs winning titles and serving as royalty for a night. It’s a wonderful thing — don’t get me wrong — but we parents worry about the other 364 days a year. Such a discussion was taking place on my Facebook page yesterday afternoon after I posted a terrific piece by another mom who also grapples with such things, when the phone rang.

It was my mom.

“How was lunch?” I asked, not really paying attention, thinking I knew the answer. My mom had been once already this year, bringing Sophie Panda Express (half rice/half noodles and a small pink lemonade) and happily eavesdropping on junior high conversations.

“Well,” my mom said. “Not good.”

Turns out, the kid Sophie’s been eating with all year walked up to her in front of my mom and announced he won’t be sitting with her anymore. I get it. Really, I totally get it. I love this kid; he and Sophie have had their ups and downs and he’s been very patient with her. He had another guy in tow, and my guess is that like most eighth grade boys, he’d rather hang with the guys and he found one. Good for him.

That leaves Sophie with the rest of the entire school.

I asked my mom, did anyone else at lunch acknowledge Sophie? No. Only a cafeteria worker who noticed when Sophie tried to cut in line. (That part made me smile.) No kids.

Shit. Lunch has always been my biggest worry. In kindergarten, I worried that Sophie would be mowed over by the other kids as they rushed the playground. I hired babysitters to pose as volunteers and spy to make sure she was okay. A couple years later, we had an “incident” — older girls grabbed her lunch box and locked her in the bathroom (briefly, but still). Not long after that, we got a lawyer and the lawyer got Sophie an aide, an incredible woman who I’m convinced has paved the way for Sophie’s inclusion and success.

But (ironically) the aide is on break at lunchtime, the one unstructured period during the day. And really, I know that Sophie’s old enough, mature enough to eat lunch by herself.

Which is exactly my point: “by herself.”

I hung up with my mom and sat for a minute, staring at the floor, as the work emails stacked up in my in box. I reminded myself that I didn’t always have someone to sit with at lunch when I was in school. I spent most high school lunch hours hiding in the library. Those, of course, were the bad old days. I wouldn’t wish Hopi Elementary School in the 70s or Arcadia High School in the 80s on my worst enemy. (I think I’ve blanked out entirely on junior high, a good thing.) We wore band tee shirts, and tee shirts with sayings like “Do The Hustle.” There were no kids with intellectual disabilities, none that I saw anyway.

But this is 2016, this awesome time where a person with Down syndrome gets assigned a Best Buddy, competes in Special Olympics, and might just be elected Prom Queen. There’s a social skills club at lunch at Sophie’s school, I’ve been told several times. There’s a tee shirt campaign at Target, encouraging kindness! She’s a fucking cheerleader, okay?!?!

And yet, my kid has no one to sit with at lunch.

I get it, I suppose. Most kids’ goal in junior high (even in this allegedly enlightened age) is to emerge unscathed and unnoticed. Sophie demands attention — both because she’s half the size of the other kids, and because, well, she literally demands attention with her intentionally ratty hair, wedge sandals and eyeliner experiments. She still sucks her thumb on occasion. It’s not so easy to understand her when she talks. And her conversation abilities are not those of your average 13-year-old girl. But she’s trying. And of course trying is the kiss of death when you’re a 13-year-old girl.

Someday she’ll fully embrace punk rock and she’ll be set for life. But for now, I’ve got to figure things out.

I stopped staring at the floor and emailed Sophie’s team leader at school, her math teacher. He’s a nice man who wrote back immediately, reporting that last Friday he noticed Sophie eating lunch in the school office by herself.

When asked why she was in the office, she told me how that person did not want to eat with her anymore. I tried to encourage her to sit with other people, but she told me that [she'd only ever sat with that boy]. My next step involved bringing up her self-esteem and letting her know that plenty of people know who she is, and would love to sit with her. I also told her that other peers love to say hi to her in the halls. She still wasn’t ready to give the cafeteria another try.

I emailed him back and cc’ed several others at the school, reminding them that I’d expressed concern about lunch at the beginning of the school year. In part I wrote:

I’m not upset with the boy. I know their friendship has ebbed and flowed over the years. This boy shouldn’t be responsible for sitting with Sophie at lunch.
But that of course leaves the question — who, if anyone, should? 
There are lots of stories out there this time of year about all the kids with special needs being elected King and Queen of Homecoming. But what worries me more whether they have someone to eat lunch with on a typical day.
I’m honestly not sure what to do. Do I ignore this and let Sophie figure out her social life herself? I know she loves hanging out in the office. Is that the solution? If so, let’s discuss it. If not, let’s discuss it.
We love [this school] and we love all of you and I’m so sorry to take up your time….But….
????
Thanks. Amy  
I’ll let you know if I hear anything back.

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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Why Can’t I Be You?

posted Monday August 29th, 2016

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Years ago, as elementary school came to a close, Ray warned that Sophie’s Salad Days were ending, too.

I completely agreed. Gone, soon, would be carefree days of feeling accepted, of being fully included. That was more than two years ago, and I’m still waiting — against all odds, I’m pretty sure — for the universe to kick Sophie in the ass.

In fact, the first few weeks of eighth grade have pretty much cemented our younger daughter’s position as queen of her world.

That’s not to say that her life is perfect. Sophie has inklings (sometimes more than that) that the world has dealt her a shitty hand, that some things don’t come  as easily to her and never will. She loves the reality TV show “Born This Way” — I can feel the pride she has that there’s a “cool” show about people with Down syndrome. She begs me to let her watch. Inevitably, she winds up with her head burrowed in my shoulder, whispering, “I don’t want to have Down syndrome” as she watches several young adults and their families face the challenges of disability and adulthood head-on.

“Let’s change the channel,” she says, beating me to it. She’d rather watch re-runs of “Dance Moms.” She applied last month and wants to know if we’ve gotten an email back yet. No, I tell her. We haven’t.

I’m not sure if Sophie realizes she doesn’t have a hope of being cast on “Dance Moms,” a fairly despicable but addictive reality show about as different from “Born This Way” as it gets. The girls on the show are creepy-perfect and hyper competitive, and their moms are creepy, too. I’m sure I’d hold Sophie’s application back as much as anything. And really, it’s a numbers game. There have to be thousands of kids vying for a spot.

Sophie understands math better than I do, but she still thinks her chances are good, because — well, because she usually gets what she wants. Mostly because she asks. And asks, and asks, and asks. Believe it or not, I do say no. But when you ask as much as Sophie does, you’re gonna get — sometimes.

For example, on Saturday I took Sophie out to run errands and get our nails done.

She wanted to leave the house without brushing her hair. (I gave up and said yes, since we were about to miss our appointments.)

She wanted to play her ukulele in the nail salon. (NO.)

She wanted a dress from the used clothing store. (Yes. But just one.)

She wanted to invite a friend over for a sleepover. (No.)

She wanted to order an “affordable” outfit on amazon.com. (No.)

She wanted to buy herself a present while shopping for a birthday gift for a friend at a local boutique. (No. I told her she could spend the $20 Ray had given her earlier that day and that led to her texting Ray to say that I was trying to steal the money he’d given her for the school book fair.)

She wanted to go to Target. (No.)

She wanted to go out for Thai food. (Okay, fine.)

You get the picture. (That, by the way, was in the span of a couple hours.) It’s not just me. She does the same with Ray, the nanny, her big sister, her grandmother. And she has employed this method in junior high.

After the first week of school, we had a meeting of Sophie’s “team,” to talk about how things were going. The biggest challenge, it seemed, was not that Sophie (fully mainstreamed with an aide) couldn’t keep up or didn’t understand what was going on. It was that she was throwing her hand in the air every time any of her teachers asked a question.

“Please don’t call on her every time,” I said.

There was a palpable sense of relief around the table, even though I was assured that given the typical apathy of the eighth grade, it’s refreshing to have Sophie around.

I do get that. Sophie wears it all on her sleeve, including her heart. I had a crush on my eighth grade social studies teacher but God forbid anyone should have known. (Please, if he’s still around, no one tell Mr. Broderson, okay?)

Sophie, on the other hand, made up a cheer for her social studies teacher. And, noticing that he seemed like he might enjoy hiking (read: fit hipster), asked for his phone number so she could give it to Ray, figuring the two might like to hike together.

“You know, you didn’t have to give her your phone number,” I told the teacher, cringing as I asked, “Has she done her cheer for you yet?”

“Every day!” he replied. (The other teachers looked a little jealous.)

Sophie is making plans to attend Arizona State University (she’d go farther but she thinks she might live at home so we can cuddle) while I have a near-constant stomachache over what high school is going to look like. I’ve been like this my entire life — I worry. I don’t expect the best. I might beg, but I’m not surprised when the object of my affection doesn’t arrive on a silver platter.

More and more, I think, I would not mind being Sophie. And, given her lack of understanding of what it takes to make our world run on a daily basis, I wouldn’t mind if she knew what it was like to be me.

So I’m waiting for our “Freaky Friday” moment. (The Jodie Foster version over Lindsay Lohan, please.) In some ways, Sophie is simply a somewhat-spoiled teen and I her fairly-clueless, out-of-touch parent.

Of course, in many ways, it’s so much more. But I hope it stays like this a little longer.

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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We Don’t Need Another Tiny Superhero. Or Do We?

posted Wednesday July 20th, 2016

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A letter landed in my e-mailbox the other day.
Hi Amy!

My name is Robyn Rosenberger and I’m the founder of  Tiny Superheros – a superhero cape company with a big mission to empower Extraordinary kids as they overcome illness or disability! (The attached 2 min video captures our mission!)

I came across your blog awhile ago, and I just love it!  We have dozens of TinySuperheroes on our Squad who are using Down Syndrome as their super power and we would love to have Super Sophie on our TinySuperheroes Squad! If you think she’d like to join our Squad, I’d be honored to send her very own, official TinySuperheroes cape!

After you receive her cape, if you think our mission is something that aligns with you, we’d love for you to consider sharing your TinySuperheroes experience on your blog. Your influence would go a long way in helping us in our mission to empower a generation of children to choose kindness! We would also love for your readers to know about our TinySuperheroes Squad, so that their Extraordinary kids can join, too!

We are also excited to to cross promote your blog to our 33,000+ social media followers as a Thank You for your support as well! Today we published a blog post about 8 of our favorite blogs written by moms of TinySuperheroes! Yours in on it, of course! http://tinysuperheroes.com/blog/some-favorite-blogs

I look forward to hearing back from you! And if we can send Super Sophie a cape, let me know her favorite colors and the best address to send it to!

Much love!

Robyn Rosenberger
TinySuperheroes, Founder

My first response, I will admit, was “Ick.” I wondered, is this inspiration porn — or just a well-meaning gesture? I’m beginning to think the line there is a lot finer than I originally surmised.

Am I too judgey? Not judgey enough?

I thought about it for a few days. (Okay, not exclusively, but you know what I mean.) I showed the email to a couple friends. They were not impressed. At 13, Sophie likes high heels, hoop earrings and boys, one friend reminded me. Isn’t this infantilizing her? What if she had a disability she was not able to overcome — would that mean she’s not super?

I watched the video (sponsored by American Express) and Robyn Rosenberger looks like a really nice, well-meaning person. I itched to want to like what she’s doing. But I couldn’t make up my mind.

 

So I decided to do what I should have done in the first place: One night after dinner, I asked Sophie.

 

“Hey Sophie, there’s this woman who wrote to me and she says you are a superhero because you have Down syndrome and she wants to send you a cape. Do you want it?”

 

“YES.” The answer came without hesitation.

 

“Really?”

 

“Yes.”

 

“Even though it’s about Down syndrome and you don’t always like to talk about that?”

 

“Yes.”

 

Huh. Well, okay. I didn’t have a chance to write to Rosenberger the next day and that night, I decided to ask Sophie again, just for the heck of it. This time, her older sister Annabelle was there. I gave her the back story.

 

“Hey Sophie, you want that cape we were talking about last night?”

 

“NO.”

 

“Really? Last night you wanted it.”

 

She shook her head.

 

“Is there something you’d want instead?”

 

“Mechanical pencils.”

 

“How about a tiara?” Annabelle asked. She was getting into it.

 

“Annabelle, no!” Sophie replied.

 

Annabelle pressed the issue. Why didn’t Sophie want a cape?

 

“I don’t want it because I won’t use it,” Sophie said. “I’ll use mechanical pencils at school.”

 

(Also she likes to eat the erasers, but I decided to stay quiet.)

 

And so it was decided. No cape for Sophie.

 

But still I wonder: Inspiration porn, or well-meaning gesture? Or both? Can’t it be both?

 

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

Me and My Shadow

posted Monday July 4th, 2016

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I’m a big fan of Ellen Seidman’s blog Love That Max, so I was really excited when she invited me to write a guest post. Here’s what I came up with, and I’m posting it here in case you don’t follow her blog (you should!) and in honor of Independence Day.

What my daughter lacks in gross motor skills, she’s always made up for in tenacity. Sophie has Down syndrome. She didn’t walk till she was 3, but from the time she did she’s been heading my way, starting long before dawn on most mornings.

I’m an early-to-bed-early-to-rise girl. Particularly as a working-outside-the-house mom, the hours between 4 and 6 am are sacred, a time to slip out of bed quietly and settle at the kitchen table with a laptop, coffee, and a dog or two at my feet. No humans. Bliss.

There’s nothing wrong with Sophie’s hearing. For years, now, no matter how careful I am not to knock over the toothpaste or slam the hall door, within moments after I’ve hit the kitchen, I hear a familiar shuffle of little feet and a tentative, “Mama?”

“Oh no, Sophie,” I say as soon as she appears in the doorway. “It’s way too early. Go back to bed! You need your sleep.”

By this time she’s made her way to my side, shaking her head as she burrows it under my arm for the first cuddle of the day.

“If you up, I up.”

If I’m up, she’s up. I sigh and remind myself that I should be grateful for this extra time, not so selfish. Sophie and I will part company in a few hours – she’ll go to school, I’ll head to the office – and evenings are hectic.

Still, I crave my own time.

Some mornings, she heads back to bed. Others, she finds her way onto my lap, demanding cuddles, Carnation Instant Breakfast, eggs she can crack into the bowl herself before I prepare them. I shoo her off my lap and hobble old-lady style to the fridge to get the ingredients for scrambled eggs, humming the tune to “My And My Shadow.”

Both my kids love rituals, and I love this about them. Sophie’s older sister, Annabelle, has a sentimental attachment to our annual family beach trip, to our Hanukkah and Christmas traditions, to the house she’s lived in since she was born.

Sophie has a sentimental attachment to her thumb, something that worries me more now that she’s officially a teenager. Mostly, she has an attachment to me. It’s not that she’s clingy, per se. When we are out together – shopping, get our nails done, at family gatherings – she’s social, engaging with others. It’s more than she has these mother/daughter rituals. Some of them crack me up, even when they make me feel claustrophobic.

For example, Sophie insists on sitting directly behind me in the car. (She’s still way too small to ride up front, to her disappointment.) If I’m driving, she sits on the left. If I’m the passenger, she must be on the right. This can sometimes get a little complicated, but is not typically a big deal.

Every night, she waits for me so we can put on our pajamas together. She asks me, “Nightgown or top and bottom?” And plans her own sleep outfit accordingly, so we match. She brings hers into my room and spreads it out on the bed, waiting until I’m ready so we can undress together.

“Ahhhh,” she sighs heartily, every time. “Don’t you just love the feeling of taking off your bra at the end of the day?”

I do. I laugh and nod. Sophie is getting her own set of breasts, and she’s very proud of them. Once we are in our pajamas, we sit in the same spots on the couch (dictated by Sophie) and watch TV shows she’s chosen (her favorites are Dance Moms and Project Runway) and “cuddle to sleep.”

Usually within minutes, she’s limp and drooling, sleeping so hard it’s almost impossible to wake her to move Sophie to her own bed, unless she’s won her daily negotiation to sleep in mine, in which case she rises happily and climbs into the king-size bed in between spots reserved for my husband and me, head on a satin pillowcase, hand wrapped around her favorite Piglet toy.

She’s so sweet, sleeping peacefully alongside my spot in the bed. But looks are deceiving. By midnight Sophie’s a whirling dervish, kicking her legs, flailing her arms, a tiny Ninja warrior in her sleep. And not so tiny anymore.

“Whatever you do, keep them out of your bed,” I warn mom friends with kids younger than mine. “I haven’t slept since I was pregnant!”

And yet, most nights, I give in. When I don’t, my husband does. Sophie has her ways. Mostly, it’s good, old-fashioned nagging. Often I’m reminded of Olivia the Pig, one of her favorite book-turned-television characters, and her mother, who ends many days by telling her child, “Olivia, you really wear me out. But I love you anyway.”

I try to stay up – there are dishes to wash, laundry to sort, office work left undone – but I never can. So I slip into bed beside Sophie, and drift off to sleep.

In the past few months, Sophie has started to sleep late in the mornings, and I wonder if things are all about to change. Will the hormones kick in, will she call me a bitch, refuse to let me touch her? Some days all I want for Sophie is for her to be “normal” — to grow six inches and 30 IQ points – and I know she wants that, too. As she grows older, she wants it more and more.

I spy on other 13 year old girls – at the mall, at ballet class, from the carpool lane when I drop Sophie off at school, and marvel at how grown up they are, so self-assured and independent. Young adults. I get flashes with Sophie – her birthday request for “high heels,” her love of sushi – then I catch her with her thumb in her mouth at a party and I’m pulled back to our reality.

The feelings ebb and flow but the truth is that Sophie is growing up, in her own way. Maybe someday she won’t want to sleep in my bed at all. At night, as I pull the covers up around both of us, I realize that in some ways – ways that truly surprise me — Sophie and I are both truly content. I try to live in the moment. Or at least get some sleep, since morning’s not far off.

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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