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Dear Sophie,

You know, I have been writing this blog for the last 8 years — I started it on your fifth birthday, to document your year in kindergarten — but I’m not sure I’ve ever actually written to you, only about you. So today, in honor of your 13th birthday, I thought I’d write you a letter.

THIRTEEN! How did this happen? People always say this, but I don’t know where the time went. It’s my best job and greatest honor to be mom to you and Annabelle. It’s funny, for as much as you two have changed since you were born, I feel like I’ve changed just as much — maybe more. I’m not any taller, and I haven’t learned how to do as many things as you two have, but I think I’m a lot wiser than I was before I knew you. One thing I’m certain of is that I definitely don’t know it all.

I think you know, Sophie, that you are the first person with Down syndrome I ever met. I think you and I (and the rest of the world, for that matter) are only beginning to really understand what it means to have it. I know you don’t always want it. And I get that, even though there are things about you — your beautiful eyes, your long toes, your ability to see the good in almost everyone, as well as your skill of doing the splits at the drop of a hat — that I suspect are a direct result of that extra chromosome. But I get that some days, it feels like Down syndrome is holding you back, weighing you down, and I suspect it might feel a little bit like trying to swim in a pool filled with Jell-O.

As your parents, your dad and I consider it our job to clear obstacles in your path and help you get to where you want to go — or, at least, figure out the target destination. I know Down syndrome sometimes makes that harder, and most of the time, when we talk about it, I don’t know what to say. I know parents aren’t supposed to admit that — we are expected to have all the answers. But I want to be honest. That is why I sometimes just give you a hug when you say you don’t want to have it.

But today, I know exactly what I want to say to you, on your thirteenth birthday. I know that you are the one who will be blowing out the candles and making that big birthday wish, but I have a wish for you, too, dear Sophie.

Please don’t grow up so fast.

I am surprised to be saying that. You see, when you were born, I worried that in a lot of ways you would never grow up. Down syndrome can mean so many things for so many people, and we did not know if you would walk or talk or read books. We didn’t even know if you would survive heart surgery. And so I wished hard for you to grow up — to get potty trained so you could go to kindergarten, to learn to swim, to study math and science and all the hard stuff at school.

You did it. You exceeded our expectations on all of the above, but more important than that, you are growing into a young lady with grace, poise, mad style and a wicked sense of humor. I love to be around you. You are not just my daughter, you are my friend. And you are a friend to others. Almost every day this year when I dropped you off in the carpool lane, you marched right into junior high, usually pausing to wait for a friend or two (or two boys at once!). I envy that about your, your easy ability to make friends and your desire to celebrate them, like you did when you called your BFF Tatum onstage with you during your choir solo so you could sing to her and share the spotlight.

The other day you told me that the first thing you wanted to do when you finished seventh grade this week was go shopping for school supplies for eighth grade. You always want to know what the plan is for the next hour, day, week, month. You love to make plans — for sleepovers, college, career paths. I get that, I have always been the same way. But it’s funny, for as much as I’ve spent the last 13 years pushing you forward and worrying about you growing up, now I want to yell at the universe, “Slow down!”

Don’t grow up so fast, Sophie. Don’t be in such a rush. The other day, you and your sister performed in your ballet studio’s annual recital. This year’s theme was Peter Pan and I sat in the audience and cried, watching the two of you dance so beautifully, so grown up and still children in so many ways. There is no Neverland, no way to freeze you like this forever, as you stand on the brink of becoming a woman. I wonder, Sophie, now that you’re a teenager, will you still cuddle with me? Eat chocolate ice cream for every occasion, and not care at all if you get it all over your face? Suck your thumb? I hope you give up the thumb — those braces were awfully expensive — but never the cuddles. You will always be my little girl, even in the high heels and  hoop earrings that top your list of birthday gift requests.

I will be honest. I don’t know exactly what the future holds for you, Sophie. I don’t know what it will mean to be a teenager with Down syndrome. We will have to figure out that one together. But if the last 13 years are any indication, the next 13 are going to be pretty awesome.

Happy birthday sweet girl!

Love,

Mom

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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I was nervous about the Alzheimer’s studies that ask for brain scans and drug trials, but I agreed to the heart research that only required a blood draw and the saliva samples Ray and I still have to send in.

And I was super eager  for Sophie to participate in the sleep study.

There’s a guinea pig aspect to having a kid with Down syndrome (well, there can be, if you’re game) and lots of benefits for the distant and maybe even not-so-distant future. For me, the most intriguing is Jamie Edgin’s sleep research at the University of Arizona in Tucson.

As she explained to me years ago, the concept is fairly simple. People with Down syndrome almost invariably have cognitive issues, and Edgin believes it’s not all in the brain. Some of it, she and others think, has to to do with physical characteristics people with DS tend to have, including the small openings that can lead to sleep dysfunction.

Lack of sleep equals impaired cognitive abilities.

I like the way Jamie Edgin thinks. I got to speak with her a few times as I worked on my book, and she is a fierce champion for the Down syndrome community and for her research. I’ll be in Tucson later this week to read from “My Heart Can’t Even Believe It,” and it seemed like a good time to put out the word about Edgin’s work and her search for study participants.

Her latest work is a collaboration with a UA student named Stella Sakhon. From the description of their work:

“Stella is currently a second year graduate student in the Cognition and Neural Systems program at the University of Arizona. She is investigating alternative language learning gmechanisms in individuals with Down syndrome. Stella is interested in understand more about the way individuals with Down syndrome learn and the role that sleep and attention may play in their language difficulties. Stella is teaching individuals with DS new words using two different strategiesto determine the most effective way of presenting new materials.”

Edgin described their “tireless” work and gets no argument here, but included a comment for me that I have to share here because it will explain how much I love her:

“Amy – this may sound as if we are bragging – but we often do work 7 days a week in my lab. My grad student Dina Spano moved to Phoenix for 4 months and often drove 4 hours a day to finish her work. We never stop. And the only reason that I can give for this is that I people that people with DS deserve research and researchers who will never stop. We understand this and work hard for them. They are not “guinea pigs” to us (many of my staff have family members with DS)- they are what inspires us to work harder and harder…

“When I am up at 3 am at night working on a deadline, it is remembering the >300 people with DS who have come into my life that keeps me going.”

So don’t you want your kid to participate in Stella and Jamie’s latest study?! If you live in Tucson or Phoenix, you are in luck. Here’s the rest of the information:

“The Down Syndrome Research Group at the University of Arizona is currently looking for participants for a study on language learning in individuals with Down syndrome.

“If you have a son or daughter with Down syndrome between 11 and 25 years of age, you and your child are invited to participate in a research study being conducted by Dr. Jamie Edgin and Stella Sakhon.

“The goal of this study is to learn more about different ways of language learning in individuals with Down syndrome. The results can have applications for designing intervention programs for language learning deficits in individuals with Down syndrome.

“If you decide that you and your son or daughter would like to be in this study, we will ask you to visit the Down Syndrome Research Group at the University of Arizona for four visits. Visits can also be conducted in your home and in Phoenix at the end of the summer and in early Fall. At each visit, your son or daughter will play a computer game used to assess their language learning and various memory assessment games.

“As a token of our appreciation, you will be compensated for your time and efforts. We will also provide feedback on your child’s sleep profile.

“If you would like to learn more about this study, please call the Study Coordinator at 520-626-0244 or email: DSRG@email.arizona.edu”

A side note: We tried this study with Sophie a few years ago. She was game (Edgin’s staff was really great with her!) but I couldn’t help but wish that Edgin’s next research will focus on stubbornness when Sophie refused a “redo” after a sleep sensor feel off in the middle of the night. I’m hoping the topic will come up when we are in Tucson and that Sophie will agree. The photo collage above is from #goodnightsophie — a series I’ve shot of her in recent months and years that I believe demonstrates there are some sleep issues there! And that sleep (on Sophie, anyway) is pretty photogenic.

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. Amy and Sophie will be reading and signing books at Antigone Books in Tucson on Friday, May 20 at 7 pm (books will be for sale there, too). For more information about tour dates and other events visit myheartcantevenbelieveit.com and here’s a book trailer.


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I am so grateful to Sophie’s teachers — past and present — and to everyone at her school (she pretty much knows them all by name!) for educating, enlightening and including my little girl.

Sometimes, knowing where to begin to say “thank you” can be tough.

As usual, Sophie gave me the best lesson when it came to a concrete example of gratitude, in the form of notes she wrote last night to her teachers. I gave her a stack of hot pink index cards, a fine-point Sharpie and a list, and asked her to write a note to each of her teachers. She’d had a more-than-full day, including homework and ballet class, but she complied happily, occupying herself at the kitchen table and leaving a pile I didn’t turn to till early this morning as I was furiously shoving salt water taffy and iTunes gift cards into bags.

Check out the note (photo above) that Sophie wrote to her Language Arts teacher:

“Thanks for teaching me all of those awesome things to me and reading The Outsiders. Sophie”

To the math teacher: “Thank you for teaching me all of math.”

And to her beloved aide, who has been with Sophie (but not necessarily by her side from third grade to seventh, and if you have any knowledge of how it’s supposed to work with a one-on-one aide you know what I mean): “Thank you for traveling with me from elementary school to this point.”

I couldn’t have said it better myself. The girl can write. I’m bursting with pride — and gratitude.

 

 

 


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One of my favorite parts of blogging — and social media in general — is the connections we make off the written page. When I contacted Chevalier’s Books in Los Angeles to schedule a reading from my book, the marketing manager (her name is Liz, so things get confusing immediately) asked if I was interested in doing a joint event with her friend Elizabeth Aquino. “I know her!” I replied.
Well, “know” might not quite describe it — but I’ve been reading Elizabeth’s blog for years, and we have mutual friends from different parts of our lives. Also, she’s a freaking amazing writer.
Kismet!
And ta da, this Friday, May 6 at 7 pm, Elizabeth and I will take the “stage” together at Chevalier’s — one of the sweetest indie book stores I’ve ever been in. (Sophie and I checked it out on a recent trip to LA and she very much approves — and is pretty pissed she’s not coming along. Darn seventh grade.)
Elizabeth has an official bio that I’m going to share, and I also asked her to answer a few questions about blogging and why she does it. I’m always curious. I can’t wait to meet her in person and I hope you join us on Friday. I hear there will be some pretty fabulous baked goods to go along with the conversation.
And now, please allow me to introduce Elizabeth.
Elizabeth Aquino is a writer living in Los Angeles with her three children, the oldest of whom has severe disabilities and is the inspiration for much of her work. Her essential blog, a moon worn as if it had been a shell, is a place where disability, poetry, politics and parenting intersect. Elizabeth’s work has been published in literary journals and anthologies, and in The Los Angeles Times. She was the recipient of a Hedgebrook Writing Fellowship for work on her current memoir Hope for a Sea Change.
When did you start blogging?
My first post was June 30th, 2008. I introduced myself as a writer who loved poetry. My second post was about the death of my young sons’ Beta fish who was named Lemonade Cool Shark. I had no idea what I was doing and named the blog this long line of poetry — from W.B. Yeats’ “Adam’s Curse.” I’ve always loved that poem and that line in particular, but it’s a ridiculous name for a blog.
Why?
I had part of a manuscript for a memoir that I’d been working on for a couple of years. I sent out a couple proposals to possible agents, and one of them said that while I’m shopping around, I should start a blog to get some readership. I had no idea what I was doing, was only vaguely aware of blogs because I had a friend or two that had them, but I went to Blogger and began posting.
Who’s your target audience, if you have one?
Initially, I hoped to reach other parents of children with special needs, but as a writer and lover of poetry I imagined a community of like-minded people as well. I’ve always struggled with my identity as mother of a special needs child and as woman, writer, person in her own right. The target audience, though, morphed into a vast and beautiful community of artists, parents, disability activists and some very funny people thrown into the mix.
What topics are out of bounds (if any)? 
I don’t write about marriage. I am divorced now, and I will not write about that, either.
What have you learned about yourself through your writing? 
Oh my goodness. I’ve been a writer since I was a little girl, and nearly every bit of who I am is shaped by reading and writing. Blogging is a sort of exercise for offline writing, but there have been plenty of times when my posts take me by surprise — they are far more powerful than I had thought or reach and resonate with people way more than I had intended or imagined. I’ve learned that I am quite skilled at articulating a certain kind of caregiving that might not always appeal to every reader but that definitely resonates with many. It’s part duty and obligation to my fellow caregivers, part intense need to articulate and share these often difficult experiences and part deep love of the writing process itself that keeps me posting almost daily.
Favorite blogs, when you have time to read? 
Reading is really the only constant in my life, and I am a voracious reader of fiction. I have a stable of blogs that I read daily, as well, (you really have to nurture your community to be nurtured in turn!) and those people are my community. I have met many of them and have formed deep friendships with several over the years that are as rich as any friends I’ve had in my lifetime. I won’t single out any blog in particular, but you can go to my blogroll on the right sidebar and see the list.
What’s the best thing about blogging?
It’s the best exercise for offline writing I can think of — you can throw stuff up there, get an immediate response and be inspired by others’ encouragement. Mostly, though, the best thing is the incredibly beautiful community that I’ve nurtured and been nurtured by over the last eight years. I truly love these people and feel secure in their love for me.
What’s the worst? 
Every now and then I get a vicious comment from someone who doesn’t just disagree with me but rather attacks me personally or my family. They’ve come from anonymous people and even from family and are always deeply unsettling. I am generally someone of strong opinions and have a tendency to be sharp-tongued, so when there’s conflict on the blog I try to calm myself, not to react immediately (which is my natural wont) and take seriously the person’s complaint. I try to explore my often visceral reactions to these criticisms and attacks, figure out what truths, if any, are in them and work them out openly. They take a lot out of me, though.
What’s next?
I have no plans to stop blogging. I have plans to pick up my manuscript that I worked so hard on last summer at Hedgebrook and finally shape it for publication. It’s a looooooooooooong labor of love, and maybe one of these days I’ll hold it in hand.

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 AmazonChanging Hands Bookstore and Chevalier’s Books. For information about tour dates and other events visit myheartcantevenbelieveit.com and here’s a book trailer.


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Elephant in the Room

posted Friday April 29th, 2016

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Each year in honor of National Poetry Month, Center Dance Ensemble — a modern dance company in Phoenix — celebrates with American Voices, short original pieces inspired by poetry, held in the small black box at the Herberger Theater downtown.

The girls and I usually go. Center Dance is run by Frances Smith Cohen, my mom’s long-time business partner, and Frances’ dancers are members of our extended family, familiar faces from Snow Queen (Center Dance’s Nutcracker alternative that includes kids) and sometimes my kids’ dance teachers. In the past couple years, Annabelle has performed at American Voices, in a big group with my mother’s older dance students.

But I was surprised this year when Miss Sally invited my two girls to perform alone. I do not know why we’ve always called her Miss Sally — she’s married and as she’d tell you herself, no spring chicken (let’s just say she and I are contemporaries). But ballet is funny, and Miss Sally was Annabelle’s first ballet teacher when she was 3. She’s had Sophie in class over the years as well.

Sally is retiring from the company this year (I’m hopeful this is a Cher farewell tour situation, but I fear she really means it) and told me that for her final piece, she didn’t want to dance herself, she wanted to choreograph on my girls. Sally is a tough customer so I didn’t let her see the tears in my eyes.

I did give her a funny look.

“Are you sure?” I asked. “Sophie can do it?”

“Sophie can do it,” she replied, meeting my gaze.

Sally is a nice person but not gratuitous. She had a vision and it included Sophie, even though I can’t recall ever seeing a kid onstage during American Voices, and definitely not a kid with Down syndrome. Sally has always had great taste in music; I was pleased that she chose a Rickie Lee Jones song (lyrics count as poetry), and asked another Center Dance member, Brad Speck, to take part in the piece.

Damn, I wish I had video to show you. All I’ve got is a couple photos from tech rehearsal. In the piece, Annabelle plays Sophie’s mom, and Sophie is a kid determined to have her way — along with a big (one assumes imaginary) elephant “over there.” Sally knew what she was doing. It’s the perfect song for Sophie, who has a raging. nagging case of the “Hey Moms.” (“Hey Mom can I have this? How about that? How about that? That? That? That?)

And indulge me for a moment while I tell you how gorgeous Annabelle was, doing jazz choreography just a little out of her upright ballet comfort zone. That softened the blow of watching her in the maternal role, a role I think every parent of a child with special needs and a child without worries will be thrust up their kid someday. Onstage, Annabelle handled it with amazing grace, bemused by Sophie’s antics. Sophie rocked the dramatic aspects of the role and knocked out some pretty great dance moves herself.

My favorite part was sweet Brad in the corner — wearing a gray hoodie (do you know how hard it is to procure a gray hoodie in Phoenix in April? Brad and his husband Chris do now) and an elephant head — waiting to be Sophie’s prize at the end. This, too, was genius on Sally’s part. Sophie will do anything for Brad. (And he, apparently, for her.)

Thank you, Miss Sally, for a lot of years of love and lessons. Don’t make yourself a stranger, okay?

In honor of National Poetry Month — and Rickie Lee Jones, and Miss Sally, Brad, my girls and Center Dance — I want to share the lyrics to Dat Dere.

Hey mama, what’s that there?
And what’s that doing there?
Hey mama, up here! Mama, hey look at that over there!
And what’s that doing there?
And where’re they going there?
And mummy can I have that big elephant over there?

Who’s that in my chair?
And what’s he doing there?
Mummy, up here!
Mummy, can I go over there?
Hey mummy, what is square?
And where do we get air?
And mummy can I have that big elephant over there?

Quit talking!
There’s no more anything here!
Forever to manage to know who and why and where!
Quit that, child!
Sometimes the questions get filed!
And mummy can I have that big elephant over there?

Don’t wanna comb my hair
And where’s my teddy bear?
Mummy, up here!
Look at the cowboy coming there!
And can I have a pair
Of boots like that to wear?
And mummy can I have that big elephant over there?

Time will march
Days will go
And little baby’s going to grow
I gotta tell her what she needs to know
I’ll help her along
And she’ll be strong
And she’ll know right from wrong

As life’s parade goes marching by
She’s gonna need to know some reasons why
I don’t have all the answers
But I’ll try the best as I can
I’ll make him a man, that’s right

‘Cause you give the kid your best
And hope she passes the test
And I find it so hard I taught him well ***
Somewhere though she’s going I betting I never will forget ***
Mummy, can I have that big elephant over there?

Hey why they do that there?
And how you put that there?
Hey mummy, up here! Hey mummy, what that say up there?
Hey mummy, what is fair?
How come I have to share?
And mummy can I have that big elephant over there?

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” published by Woodbine House, is now available. You can order it from Changing Hands Bookstore or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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The Jewish Thing

posted Friday April 8th, 2016

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This is a piece I read last night at Bar Flies, the monthly spoken word series at Valley Bar in downtown Phoenix. In the coming months I’ll write more about the girls’ b’not mitzvah (that’s what it’s called when there are two girls participating) and how the process is working specifically for Sophie. So far, so good. 

A few weeks ago, I took my daughters to a local synagogue for Friday night services.

We don’t typically ring in the Jewish Sabbath at a house of worship. Bacon and eggs at the International House of Pancakes is more like it, followed by a hard crash on the living room couch.

But here we were — a little late, dressed up and awkwardly juggling prayer books meant to be read back to front (because Hebrew is read from right to left).

I didn’t realize I was singing along with the prayers until my younger daughter poked me.

“Hey mom,” Sophie stage-whispered, “how come you know the words?”

“Well,” I whispered back, “a long time ago, I had my own bat mitzvah and–” I stopped, noticing that we were drawing stares, and not only because Sophie had insisted that we sit in the center of the front row.

Sophie is 12 (12 and five sixths, she’ll quickly tell you; she turns 13 in May) and she has Down syndrome. People stare.

My older daughter Annabelle — who is almost 15 and therefore wants nothing more than to be invisible — shushed us both, and we all turned back to the service.

Afterward there was cake and fruit and we chatted with a nice family – a mom, a dad, and two girls about my own daughters’ ages.

“This must be hard for you, doing it all on your own,” the mother clucked, motioning to Sophie.

I looked at her, confused. Then I got it.

“Oh!” I said, laughing. “I have a husband. He’s just not here tonight.”

I toyed with telling her the truth, that earlier in the day I’d invited Ray to come along to synagogue and he’d quickly declined, announcing he was quite certain he’d be turned into a pillar of salt if he dared to step foot in a house of worship.

Instead I stammered something about how he had to work late.

I am fond of telling people that I have a mixed marriage. Ray is a Republican (well, more of a Libertarian), and I am a Democrat (ok, sort of a communist). He likes to camp, I prefer hotels. He is pro-gun and pro-cat. I am neither. He has a PC, I have a Mac. He likes Game of Thrones; I watch Girls.

And he was raised Catholic. In my own defense, I swear to God – or, you know, whoever’s up there – that when we met, I thought Ray was Jewish. You would have, too. We were in our mid twenties, he was an ad salesman at New Times with dark curly hair and glasses. He grew up in Queens! HIS LAST NAME IS STERN.

So kill me. I assumed.

One Monday morning, not long after we’d met, Ray asked what I’d done over the weekend. I told him that I went to my cousin’s bat mitzvah.

“Bat Mitzvah?” he asked. “Huh. Is that for a boy or a girl?”

FUCK.

In the end – rather, at the beginning – it really didn’t matter, because Ray had given up Catholicism long ago and I wasn’t much of a Jew.

I am not sure when he stopped believing – if he ever did believe – but by the time we met, Ray had amassed quite a collection of fossils, which he kept around the house to show to the children of the Jehovah’s Witnesses who came to the door.

I remember my own moment quite precisely. I was in first grade, at religious school, in the middle of making a paper mache replica of the torah when suddenly, it hit me like a bolt of lightning:

“We are doing all this shit for that God person everyone keeps talking about.”

I chuckled quietly to myself, shook my head, and went back to trying to wrap wet newspaper around empty cardboard toilet paper rolls, mostly because I knew that after that we were going to bake challah bread, and I was hungry. Also because I was 6, and did not yet have access to a car.

And so went my Jewish education. It was easier to go along than pitch a fit – and the food was pretty good.

So who cared that our religions didn’t match? Ray and I were married by a judge; our friends read passages by Pablo Neruda and F. Scott Fitzgerald. We walked down the aisle to both Led Zeppelin and Bach.

I like to think that Ray and I have made our own kind of religion as we’ve gone along. For all of our differences, we share a joint belief in more things than you’d guess: the Beatles; annual trips to Disneyland; that giant black dogs are awesome pets; that Rent is the greatest Broadway musical ever; that it’s important to stay up till 2 am on Christmas Eve, wrapping presents and chugging Bailey’s; and that our girls should be raised Jewish.

Up until the kid part, we made it work without much effort.

One night, when I was about six months pregnant with Annabelle, Ray and I were out for pizza and talk turned to religion. I had been avoiding the topic for years. What if he’d changed his mind about the Jewish thing?

He hadn’t. We talked about what it meant to be in a minority in our hate-filled world, particularly our corner of it, in Maricopa County, Arizona. 9/11 was a few months off; we had no idea how hate-filled the world really was.

“I want our children to know they’re Jewish before someone else tells them they’re Jewish,” he said.

I swooned.

Putting the Jewish thing into practice proved more difficult. Neither of us had any desire to partake of organized religion beyond stockings hung with care and the row of candles in the menorah – and so we didn’t.

Until last fall, we still hadn’t come up with a plan to get the girls any sort of formal religious education.

The closest we got was our annual Passover seder, the springtime dinner party held to commemorate the Jews’ exodus from Egypt. These seders have grown more irreverent as the years have passed. Last year’s theme was “Passover the Musical.” We sang some traditional songs; Annabelle played her ukelele; then Sophie and and a friend sang Fleetwood Mac’s “Landslide.” Ray played Metallica’s “Creeping Death,” his own nod to the story of the Jews’ exodus.

Sitting in our backyard with flickering candlelight and sangria (my version of the traditional, terrible Passover wine), surrounded by people we love, I felt almost spiritual. It was just right.

We didn’t need any more than this. Or did we?

With Sophie’s 13th birthday looming, I felt a decision had to be made. To bat mitzvah or not to bat mitzvah? We’d already missed the deadline for Annabelle. We were close to blowing it altogether.

I visited synagogues, interviewed rabbis, got into some fights on Facebook, and ultimately decided to go rogue. We hired a tutor and I’m calling this Our Year of Living Religiously. Most Sunday mornings the girls and I drive to Mesa, where they spend an hour learning prayers and asking questions. They now have Hebrew names. They’ve been to a Friday night service. We have made hamantaschen for Purim, an obscure (and really fucking hard to make) pastry for an obscure holiday.

It feels right. It’s not much, but it’s something. And both girls are loving it. They haven’t even started asking about the party – yet.

That leaves Ray. He had not partaken of any of our Jewish activities until last weekend, when we all traveled to Denver for my niece’s bat mitzvah.

My sister took a different path than mine. She married a guy she met at Charles Pearlstein in the Pines, the summer camp that all the Phoenix Jews (but me) attended when we were growing up. There was never any question about how Jenny and Jonathan would raise their kids. Kate’s bat mitzvah was lovely and traditional. And long.

Ray, Annabelle, Sophie and I lined up on a hard wooden bench at Tempe Israel on a crisp Saturday morning. The girls and I opened our prayer books, back to front. Ray’s book sat awkwardly on his lap. But he rose and sat with the congregation and he was wearing a tie – hell, he was THERE — so I could hardly complain.

A few minutes in, Sophie dropped her prayer book. It made a loud, embarrassing thud and before I could lean over to grab it, Ray had it in his hands. He whispered the page number to her, carefully helping her flip the right spot.

And when he sat down, I noticed he opened his own book.

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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What World Down Syndrome Day Looks Like in My House

posted Monday March 21st, 2016

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Today began with a mad dash for an appropriate tee shirt. I was still on my first cup of coffee when Annabelle skidded into the kitchen, on the hunt. I had to explain to Ray what World Down Syndrome Day is. (“You know, like 4/20?”)

This was followed by near-tears as Sophie realized that she can’t wear a “Spread the Word to End the Word” tee shirt — or a tee shirt that says anything else, for that matter. Dress code.

Another battle. I sighed.

I would be lying if I didn’t admit it was a tough weekend. I was reminded more times than I can count that in the course of research for my book, I never did figure out why the brains of people with Down syndrome are structured such that a certain brand of maddening stubbornness is a common trait. Combine that with hormones and you have an almost 13-year-old who refuses to wear a bra (now that she finally needs one), demands a particular and sadly elusive shrimp ball dish at dim sum (very loudly and for 15 minutes straight, maybe longer, I lost count), and hollers “Hey Mom” at me from the back seat pretty much whenever we are in the car — for the duration of the trip.

“Hey Mom, what are we doing next weekend? Hey Mom, what time does our plane leave next month for Kate’s bat mitzvah? Hey Mom, can I have a cranberry juice? Hey Mom, turn up the music. Hey Mom, turn down the music. Hey Mom, change the song. No, not that song. No, not that one either. HEY MOM STOP SINGING!”

“Hey Mom?” she asked yesterday afternoon.

“WHAT?!” I asked, wondering how many times before I drive the car off the road and end it all.

“What should I be when I grow up?”

The kid floors me. In a good way, that time. And within 30 seconds I was annoyed again, as what I considered to be reasonable, thoughtful suggestions (mother’s helper, artist, dancer, teacher, hair stylist, nail tech, lawyer) were vetoed with increasing frustration. But for a moment I was reminded why — at least part of why — Sophie gives me such a tough time.

The world gives her a tough time.

The weekend wasn’t a complete bust. We cuddled, laughed, played with our poodle, tried to make hamantaschen for the Jewish holiday Purim, watched the second half of Pitch Perfect 2, finally bought Sophie new glasses, and I did manage to find some steamed wontons she would eat for lunch yesterday. As we were leaving dim sum, she paused by her favorite statue to do her favorite imitation, and we all cracked up.

I drank my coffee this morning and stared at my Facebook feed — at all the happy photos of beautiful kids and adults with Down syndrome. Ugh, I thought. Another DAY. Every day is World Down Syndrome Day in our house. I’m sick of everything having a “day.”

Sophie appeared at my side, asking again if she can wear a special shirt like her sister (who, unlike Sophie, who goes to a tough public school, attends a charter arts school and can pretty much wear whatever she likes, short of a bikini).

I considered the hard line. Then reconsidered.

“Yes,” I said. “Put on your uniform and you can wear a shirt over it. But they might make you take it off.”

She smiled. They won’t, she told me as she headed off to her bedroom, and what she said as she left made me smile, too.

“Today is not their day, it’s my day.”

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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My dear friend Claire swears that every time she had a fever as a kid, she grew. Claire is quite tall. She might be on to something.

I feel the same about Sophie and Disneyland — but not with height. Every time we go, I think Sophie emerges a little smarter, a little more mature. Or maybe just a little more cunning.

We’ve been more times than I can count, plenty of opportunity to gather empirical evidence. When Sophie was just shy of 5, she made her first real foray into potty training after the promise of Snow White panties in exchange for dry pull-ups. At 7, she showed compassion and maturity by befriending a Disney employee who happened to be a little person, a young man who later admitted to me that he often felt left out and shunned by kids visiting the theme park.

And on our most recent trip, this weekend, Sophie demonstrated a pretty good ability to hold it together when told that her very favorite character would not be appearing at all during her time at Disneyland.

Sophie has been in love with A.A. Milne’s Piglet for as long as anyone can remember — a stuffed Piglet holding a purple butterfly was one of her earliest toys. And while Disney has devoted a corner of the park and a ride to Winnie the Pooh and friends, Piglet has remained elusive. On every one of our trips it’s been Eeyore, Tigger and Pooh in costume. No Piglet. I’ve always been told that Piglet comes out in summertime, and since this trip was later in the year than any we’ve taken (we are wintertime Disney visitors, typically) I thought there was a chance. Sophie thought there was a chance. So did the many Disney employees she encountered on our way into the park.

“Don’t promise!” I mouthed over her head to more than one well-meaning cast member.

Too late. By the time we reached the front counter at City Hall and Sophie received official word that no, Piglet was not coming out this week, hopes were high. There were tears, and one giant sob. But the kid pulled it together with uncharacteristic maturity. Within minutes she’d talked me into buying her not one but two stuffed Piglet toys, one of which she initially intended to give to Pooh but ultimately decided to keep for herself, solving her problem by asking Tigger, Eeyore and Pooh to pose for selfies with her and stuffed Piglet.

Later we returned to City Hall, where Sophie was given the gift a signed copy of all four costumed Milne characters. Not a bad haul.

“Wait,” Sophie asked as we were standing in line at Critter Country, looking serious and eyeing a six-foot tall neon orange and white furry. “Is Tigger really the real Tigger or a person in a costume?”

“Oh my god, Sophie, are you fucking kidding?” I wanted to ask. “You are almost 13. You have to ask?”

Instead I recalibrated quickly, trained over the years, and smiled. “It’s a costume,” I said quietly, so the toddlers in line with us didn’t hear.

Sophie is smart (whatever that word means, I don’t know anymore) and getting smarter all the time. But I would be lying if I didn’t admit that yes, she is hemmed in by the impact an extra 21st chromosome has on her brain. Sometimes it feels to me like she’s running through Jello; she can see where she wants to be but just can’t manage to get there without Herculean efforts. I came home from Disneyland to a thoughtful piece by Amy Julia Becker in The Atlantic about the latest research into medication that might greatly improve cognition in people with DS — and the associated debate. People don’t want to be told that there’s anything wrong with their kid, and I get that. I admire it.

But it’s not that simple. Not for me, anyway, and not for Sophie.

“Hey Sophie,” I asked this morning. “If there was a pill you could take and you wouldn’t have Down syndrome anymore, would you take it?”

She stopped midway through a bite of Cheerios, nodding without hesitation.

“Why?” I asked.

“Because then I would be like Sarah and my other friends.”

There it was — matter of fact, honest, and out there. Painful? Yes. For both Sophie and me.

Here’s the thing. These questions are incredibly tough. The topic is impossible. People with Down syndrome are different from other people. And from each other. Contrary to popular belief, there’s as much of a spectrum as there is with autism. Some people with Down syndrome may not have been able to answer my question. Did Sophie fully comprehend it? Hard to say. I’m not sure I fully comprehend it.

Should I have asked the question? I don’t know.

But I do know that it makes me very uncomfortable when parents and others talk about the limitless opportunities for our kids, about how they can do whatever they want if we just let them. Sophie teaches me new things about herself and what my expectations should be for her every day. She has proved me wrong more than once. But in many ways navigating the world is, in fact, more of a challenge for her than for her typical peers. To look away from that is to do her a disservice.

If only there was a pill we could ALL take.

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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For Those About to Rock

posted Sunday February 28th, 2016

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My girls ditched homework and ballet class yesterday for a taste of the rock and roll lifestyle.

Girls Rock is up and running in other cities, just getting started in Phoenix. This weekend the fledgling group sponsored a one-day mini camp, a precursor to a week-long camp to be held here this summer.

The premise is simple. There aren’t enough women in rock bands, so why not start girls early, getting them comfortable with instruments and music and, more important, their voices? And not just their singing voices. This is about empowerment, expression and individualism.

It’s nothing short of awesome, both in theory and practice.

After a few hours, parents were invited to watch four bands perform. Each band had written a complete song. Annabelle played guitar; I caught a lyric from her band’s song, growled again and again: “We are not your perfect girls! We are who we want to be!”

Afterward, I saw her exchanging phone numbers with her bandmates.

Sophie was on vocals. Her band’s name was “Sassy Fox in Fuzzy Sox.” She had a blast, doing her signature splits at the end of the song. (Of course.)

I almost didn’t sign Sophie up. I’m trying to find Annabelle things to do that are just hers. And I worried that the last thing the Girls Rock organizers needed during their event was to deal with accommodating a kid with special needs. But when I pulled up the forms to register online, I reconsidered. Sophie loves to sing and perform. Was there a way to include her that would allow Annabelle and the other kids to do their thing, too?

I think there was. I sent Sophie’s nanny along as an extra volunteer, and the organizers made sure to put my girls in separate bands. I’m certain Sophie required a little extra TLC even with the nanny there, particularly with her sensitivity to noise. Apparently some headphones and a couple extra-awesome volunteers took care of that.

The best part, from what I saw, was that Sophie was included but no one made a big deal out of it — she was simply a member of the band, singing her heart out.

You can’t get any more rock and roll than that.

“My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome” will be published by Woodbine House April 15. You can pre-order it from Changing Hands Bookstore and come to my release party May 1 or pre-order on Amazon. For more information about tour dates visit myheartcantevenbelieveit.com and here’s a book trailer.


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Holiday in Havana

posted Friday February 12th, 2016

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I’m barely back, but it already seems like a rum-soaked dream — seven days and nights in Cuba, a breathtaking, heartbreaking, gorgeous, crumbling, humbling place. An incredible trip.

As our 40th birthdays approached, my best-friend-from-second-grade Amy (I know, it’s confusing) suggested we go on a trip to celebrate.

That was almost 10 years ago. We never went anywhere.

With 50 staring us down, we decided to get busy — and head south. Tourism is at a fevered pitch in Havana, as mending relations with the U.S. threaten to bring capitalism — and hoards of Americans — to Cuba. So far, so good: Upon our arrival in Havana in January, there wasn’t a Starbucks in sight, and while the city bustled, it was hardly too late to experience the real thing — the 40s and 50s-cars (“American car!” as the cab drivers bragged, beautifully preserved on the outside and not-quite-so on the inside), the gorgeously crumbling architecture and, sadly, some pretty intense poverty and deprivation.

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Without getting too confusing, there are currently two ways for a typical American to get to Cuba: enter through Mexico or Canada; or join an educational tour. We did the latter, hooking up with the amazing Tom Miller, a Tucson-based writer best known in this case for “Trading with the Enemy,” a book he wrote in the early 1990s after spending 18 months traveling Cuba, getting to know it in a way few (if any) Americans were able to do at the time.

To be honest, I cringed at the idea of an organized tour (most of the 21 people on our tour — I wouldn’t go on one bigger — also self-identified as “non organized-tour-people”) but I was so glad we took that route. Tom has been returning to Cuba for years, his connections are unrivaled, and his line-up for Literary Havana was pitch perfect. I wanted to pinch myself — every day I thought, “Did Tom crawl in my head and plan this trip just for me?”

We visited a synagogue, talked to a documentary filmmaker, watched a theater troupe practice, toured Muraleando, a non-profit devoted to arts instruction for underprivileged kids — and so on. We sipped wine over lunch while poets read, wandered around Barrio Chino (Havana has a Chinatown!), checked out Hemingway’s bathroom (great shower curtain) and hung out by his empty pool. We also saw a remarkable contemporary dance troupe called Danza Espiral that we all agreed was one of the best we’d seen anywhere. It was awesome.

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IMG_7440An important caveat, key in surviving an organized tour: Heads turned the other way when Amy and I went rogue, which happened a few times. We skipped the art museum tour and spent a day wandering around Old Havana, studying the latest Fodor’s, hitting up coffee shops, an outdoor antiques market, and an incredible print studio/gallery. After an entire week (no kidding) of nagging the hotel concierge, scored tickets to the Ballet Nacional de Cuba. We also took in a show at the Tropicana — kitschy, hilarious, and (consider yourself warned) pricey.

(One place we didn’t get to, either on our own or with the group, because it was closed was the national art school. It’s on my list for a return visit. Another: Fabrica de Arte Cubano — a giant disco/art gallery/so-much-more that was also closed.)

Our group met up in Miami (there’s a great hotel in the airport — I highly recommend it) and took a charter to Havana. We waited an hour to deplane when we got there, and when we left Cuba, that plane was delayed by several hours. But by then, we were accustomed to waiting. A week of Cuba — businesses unexpectedly closed, electricity inexplicably off, the poet your group was supposed to meet up with MIA — was charming. A few more days and I would have gone bonkers.

While in Havana, we stayed at Hotel Nacional de Cuba. It is old, giant, picturesque and a little decrepit unless you are on the sixth floor, reserved for dignitaries and other VIPs. The patio is elegant, overlooking the water, and as in most places in Havana, there’s usually live music. The bartenders were kind enough to warn me about the quality of the tequila when I tried to order a margaria. I settled into a week of rum and don’t ever need to drink another mojito, though there was one pina colada at a rest stop (of all places) that I’ll never forget.

A block from our hotel is Hotel Capri, recently refurbished and once a mob favorite. Parque Central in Old Havana also comes highly recommended.

We spent three nights in Havana, then headed for the coast, to a port town called Matanzas and then Varadero. Matanzas is definitely off the beaten path — and worth the trip. We stopped by a book-making studio called Ediciones Vigía and watched artists piece together incredibly intricate, beautiful poetry books with a rare commodity, paper. From there it was on to the Pharmaceutical Museum – a perfectly preserved, extravagant Nineteenth Century pharmacy once owned and operated by a Dr. Triolet.

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We stayed in Varadero, a beach town known for huge, all-inclusive resorts. We stayed at one. I don’t recommend that — I would have preferred to poke around the tiny town or score digs at the Xanadu Dupont Mansion. (Even if you don’t say at the mansion, stop by  – no one will mind and there are killer views.) Either way, the beach was stunning, truly “seafoam green” and, as the water stretched to the horizon, varying shades that empty your Crayola box as you try to describe them.

The restaurant scene is surprisingly good. In 2011 the government made way for paladares, restaurants run out of private homes, and the results can be stunning. The cuisine is mixed (some meals were forgettable, others not — and for not-great reasons) but so is the decor and setting — and for that, you’ll be grateful. Some of our favorites included Atelier, Decameron and Fontana. At Decameron, for example, we enjoyed a wall full of cuckoo clocks and amazing lemon meringue pie for dessert.

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Don’t expect to find super souvenirs. We didn’t. There’s just not a lot of merch in Cuba. (Except for cigars, you won’t have any problems there.) Related: You’ll hear that gifts are appreciated, and while everyone we met in Cuba was extremely cordial, I got the feeling that cash would have been preferred to the costume jewelry I’d been urged to bring. You do want to bring your own over the counter medications (particularly Imodium and Pepto Bismol) and plan to leave some behind. That’s definitely appreciated. You might also want to pack some snacks; bottled water is everywhere but we didn’t see so much as a Pringle till we got to the airport on our last day.

I don’t feel like I’ve even begun to tell the story. If you’re going to Cuba or thinking about going, message me. We’ll talk.

Also: I posted more photos on Instragram. My account is @amysilverman.

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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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