Party Hat

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

posted Wednesday July 20th, 2016

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

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

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

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

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

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

Much love!

Robyn Rosenberger
TinySuperheroes, Founder

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

Am I too judgey? Not judgey enough?

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

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

 

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

 

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

 

“YES.” The answer came without hesitation.

 

“Really?”

 

“Yes.”

 

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

 

“Yes.”

 

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

 

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

 

“NO.”

 

“Really? Last night you wanted it.”

 

She shook her head.

 

“Is there something you’d want instead?”

 

“Mechanical pencils.”

 

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

 

“Annabelle, no!” Sophie replied.

 

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

 

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

 

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

 

And so it was decided. No cape for Sophie.

 

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

 

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


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Party Hat

Me and My Shadow

posted Monday July 4th, 2016

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

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

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

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

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

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

“If you up, I up.”

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

Still, I crave my own time.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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“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 myheartcantevenbelieveit.com and here’s a book trailer.


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Blanket Statement

posted Friday June 3rd, 2016

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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 myheartcantevenbelieveit.com and here’s a book trailer.


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

posted Thursday June 2nd, 2016

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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 myheartcantevenbelieveit.com and here’s a book trailer.


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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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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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