Party Hat

Mapping Sophie

posted Thursday October 27th, 2016


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.


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.


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.


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 and here’s a book trailer.

Party Hat

Dutch Treat?

posted Thursday October 6th, 2016


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.) 

Party Hat

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

posted Wednesday September 28th, 2016


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.


“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?”


“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 and here’s a book trailer.

Party Hat

Would Someone Please Sit with My Kid at Lunch?

posted Tuesday September 20th, 2016


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 and here’s a book trailer.

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Why Can’t I Be You?

posted Monday August 29th, 2016


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 (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 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

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!

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.






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




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?”




“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 and here’s a book trailer.

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Me and My Shadow

posted Monday July 4th, 2016


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 and here’s a book trailer.

Party Hat


“Finding Dory” made me nauseous, and not just because I’m prone to seasickness.

The sequel to “Finding Nemo” was widely anticipated, particularly in the special needs community. All week my friends were sharing reviews that heralded the movie for celebrating people with disabilities, beginning with Dory, the blue tang with short term memory loss. I was excited, too, and got out to see it as soon as I could.

Nemo is a favorite in my house; my younger daughter Sophie, who is 13 and has Down syndrome, literally grew up with it. “Finding Nemo” was her very first charade; I still crack up at the thought of a teeny tiny Sophie, barely able to walk, holding her hand up over her brow, pretending to search, then putting her palms together and pantomiming a fish swimming.

I was on the edge of my seat during the entire showing of “Finding Dory,” and not in a good way.

I won’t be spoiling anything by telling you that this is a movie about a kid who gets lost, separated from her parents, unable to find them again because she is disabled. I won’t ruin the ending, but I will say that Dory meets several helpful sea creatures along the way, including, of course, Nemo and his father, Marlin, the clown fish who star in the original.

Marlin, voiced by Albert Brooks, has permanent worry lines. I most related to him. (I always do — it was Brooks’ character in “Broadcast News,” not Holly Hunter’s, who had me howling into the proverbial mirror.)

As with the original, the movie is a journey — and while I’m sure my Facebook feed is right now filling up with angry blog posts and status updates about how certain portrayals (most of the main characters have some sort of disability) were insensitive or otherwise problematic, I thought all of that was pretty endearing.

It was the part about the lost kid — yeah, the entire story, really — that had me unhinged. From pretty much the time she was born, I’ve worried that Sophie would get lost, that somehow I would not be there to protect her. That includes the moment she slips away from me in the grocery store to the big-picture-what-the-fuck-will-she-do-when-I’m-dead scenario and everything in between.

Yes, I’m neurotic. I’m Marlin. But he’s not wrong to worry and neither am I. This world sucks. People who are perfectly capable of looking out for themselves get shot in night clubs. This weekend a man was arrested for hiding young girls in his house. Sophie likes nothing more than to befriend a stranger, no matter how many times we talk about it. Someday will she wander a few feet to take in a pretty view and poof — vanish?

And if she does, will the story wrap up neatly, like it always does on the big screen? The only time I cried during “Finding Dory” was at the end, when the song “Unforgettable” played over the credits.

“That’s convenient,” I muttered to myself. “Memory serves when it works with the plot.”

What about real life? Sophie’s memory is pretty good, but her judgement is not. Not unlike Dory, she needs extra support — a nudge here and there from a parent, a nanny, or a friendly sea creature — to find her way. I’ve never been comfortable relying on the kindness of strangers. The whole thing is an impossible conundrum and this movie faced it head on; not what I’m looking for in an afternoon of supposed light-hearted entertainment.

After the movie, Sophie and I both had to use the bathroom. Now that she’s a teenager I refuse to share a stall with her anymore, but someone does have to escort her in and out. I usually try to beat her to the sinks, but this time she beat me. I was in a compromised position (I will not overshare beyond that) and couldn’t do much other than call out, “Sophie, don’t go anywhere” when I heard her strike up a conversation with a stranger. It was innocent enough, she was making small talk about the movie, but I fast forwarded to the worst case scenario. I always do, I can’t help it. And this movie had me in more of a panic than usual.

“Hold on, Sophie! I’m coming!” I yelled, sounding like a total maniac. Then I remembered something. Quite a few years ago, when Sophie was 8 or 9, we were at a big water park in Phoenix with some old friends. She announced she needed to use the bathroom, and before I could protest, our friend Mike announced he’d take her. I wasn’t thinking, didn’t consider that they’d be going into separate bathrooms. Or that Sophie was wearing a wetsuit.

The story’s been told so many times that by now I can picture it as though I was there. Sophie got into her stall and realized she couldn’t get her wetsuit off by herself. She called out, “Help! Can someone help me?”

Luckily, our hometown — Phoenix — is the smallest metropolis in the world. In the very next stall, Sophie’s long-time swimming instructor — who happened to be at the same water park on the same day with her own family — heard a familiar voice.

“Sophie?” Britt asked. “Is that you?”

The two emerged giggling.

I smiled at the memory, took a deep breath and opened the movie theater bathroom stall. There in the mirror were my permanent worry lines. And there, waiting for me, was Sophie.

Another happy ending — this time.

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 and here’s a book trailer.

Party Hat

Blanket Statement

posted Friday June 3rd, 2016


I got a Facebook message the other day from a guy I don’t know well, an artist in town. He and his wife just had their second baby, he wrote. And the baby has Down syndrome.

I invited myself over. He said okay. I think I went more for me than for them. It was weird — I felt this overwhelming desire to sit on their couch and tell this guy and his wife that everything was going to be okay. I didn’t have anything profound to say, I just wanted to wave hello from the other side.

But what to bring along? I don’t know if they are vegetarians or lactose intolerant or gluten lovers; bringing food to people you don’t know very well is so problematic these days. This is their second son, so they likely don’t need clothes. I felt weird bringing diapers, even though that’s the one thing all parents of newborns really need. (That and tequila, in my humble opinion.)

Then I remembered the blanket. When Sophie was a couple weeks old, a woman I didn’t know came to the house with dinner and her son, who was about a year older than Sophie. He has Down syndrome. She was a friend of a friend. She also brought a sweet fleece blanket with smiling kid heads on it, the kind you cut fringe into for a DIY look. At the time, the blanket enveloped Sophie; it felt so big. I dug it out of a pile of clean laundry. It’s actually the size of a large dish towel. Not long after that dinner, the woman and her family moved away. We don’t know know each other super well; I see her on Facebook. I’ll never forget that small kindness.

The blanket. Perfect. I wrapped it up and grabbed Sophie. The visit was brief. The husband and I caught up, the wife and I talked about hearts (this baby’s is okay) and Sophie played shy, running off to their toddler’s room to find some toys.

“It’s okay,” I told them when there was a lull in the conversation. “Everything is going to be okay.”

Where did that come from? Fuck, I don’t know if everything is going to be okay. We could all get hit by a truck tomorrow. Donald Trump could get elected. But I needed to say it. I felt it really strongly.

The other thing I told them was that it’s normal (for me it was, anyway) to feel weird about the whole thing. I can’t put it as well as a friend who wrote me recently, to tell me about her own daughter, who was born with a scary (yes, things like Down syndrome are scary!) medical condition.

“I just remember looking at this tiny baby and thinking, `I don’t even know this person yet. I love her because she’s my daughter, but should I keep her at arm’s length in case I lose her? Am I doing that already?’ The kind of thoughts that you’re so grateful no one else can hear because they would judge the shit out of you,” my friend wrote.

Exactly. Except we all judge ourselves. I hope these parents don’t do that, I hope they are good to themselves, that they watch junk TV and eat take out and go to the movies when they can get a sitter. I hope they wrap their baby in that smiley face blanket and hold him forever — or for as long as it takes. (I don’t think it will take long, they seem to be highly evolved — more than I am, at least.)

And even though the blanket is already a little pilled, I hope that if they hear of a family with a baby with Down syndrome that they wrap up the blanket and bring it over as a gift and tell those parents, “It’s going to be okay.”

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 and here’s a book trailer.

Party Hat

It Takes a Village to Raise a Mom. And a Book.

posted Thursday June 2nd, 2016


I’m going to begin this blog post the way I’ve started countless blog posts before. I’m going to to tell you a secret.

Book publishing is hard.

Okay, that might not be much of a surprise, but it bears mention. It’s really fucking hard. You spend a hunk of your life writing this thing (in my case, about a hunk of my life) and then you send it off into a world packed tight with so much media there’s just about no hope anyone will see it.

I worked so long and so hard on “My Heart Can’t Even Believe It” – and I’m so superstitious — that it didn’t really occur to me for a really long time that one day I might actually hold it in my hand. And have to try to get people to buy and read it.

Before the book was released, I solicited advice from two dear, trusted friends, both of whom have published books.

One said:

“Emotionally, you have to pull off the trick of simultaneously not caring, while caring intensely….You have to have febrile faith in the book while accepting the hard fact that most people aren’t going to be interested. It is not fun. But you will get through it.”

(I thought that was very good advice, even though I had to look up the word febrile.)

The other said:

 “You WILL need to go guerrilla.”

And so I girded my loins, ready to enter the ugly world of book marketing. I prepared myself for unanswered emails, books sent to black holes, the cold shoulder from some corners of the disability community, since my book and I are neither reverent nor academic. I’m glad I was ready for it, because that part has not been fun.

But the rest has more than made up for it. I was so ready for the bad that I never stopped to contemplate the good.

I showed up at my all-time favorite bookstore, Changing Hands, on the first of May, with the goal of a. finding a margarita at the bar next door and b. not bursting into tears when I got up to read for the first time. I figured a few people would come (since I’d begged them). I was blown away. There, sitting before me, was my world. Ray, Annabelle and Sophie. My parents. The guy who married us. My best friends, early readers and late cheerleaders and people who have listened to me whine ad nauseum. People with kids with Down syndrome I knew; people I didn’t. Co-workers, co-writers, co-conspirators. Teachers, therapists. More family. One of Ray’s oldest friends. The love in that room, that day, was not like anything I’d ever felt.

And yet, I realized, as I stood there, that I’ve felt it all this time. These are the people, the community, the village, that raised us as Ray and I raised our girls.

I’ll never forget the beautiful, emotional introduction by one of my dearest friends, Cindy Dach, who once stood in the same spot and handed David Sedaris an ashtray (it was that long ago — he was still appearing in bookstores, one could still smoke indoors) and told him to go right ahead.

Later, Ray described it as one of the best days of his life. I agree. A month later, I still can’t believe it wasn’t a dream. May was packed with more amazing days — friends came from as far as San Francisco and San Diego to my Los Angeles reading, which was a wonderful reunion of old friends and a chance to make new ones. Antigone Books in Tucson was equally amazing. Just about every day of the month, it seems, there was a reading, a media interview, an event. And so much love on Facebook it was like having a month-long birthday but not getting older. (Or, as I have said more than once, like going to your own funeral.)

Hearing from people who have read the book has also been incredibly gratifying and humbling.

I am so spoiled. And so so so incredibly lucky. I’m also still working really hard to get the word out on the book. This month I’ll travel to New York City, Washington, D.C. and Denver. I’m bugging editors and reporters and folks who run Down syndrome groups, and I have a lot of newfound respect for anyone who works in public relations.

But mostly, as I head into June and beyond, I’ll be thinking about May.

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 and here’s a book trailer.

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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