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Down Syndrome Awareness Month Was a Bust. Now What?

posted Thursday November 2nd, 2017

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Down Syndrome Awareness Month was a bust this year. For Sophie and me, anyway.

Okay, that’s not exactly true. In a lot of ways, October was a terrific month, particularly when it came to educating others about Down syndrome. I got a piece published on the New York Times parenting site, and I traveled to California to speak to several English composition classes at Taft College. The month was bookended by two performances by Detour Company Theatre, the musical theater troupe Sophie is a part of; she traveled to Tucson and Tempe to perform in “Beauty and the Beast.”

And a letter I wrote on my blog to to the teachers, staff, and students at Sophie’s high school got great response — shared all over Facebook and republished on The Mighty, a high-profile site devoted to issues surrounding disability.

But Down Syndrome Awareness Month was a bust because as far as I can tell, no one who mattered — no one at her high school — read the letter. (You can read it here.)

I emailed it each of her teachers, the principal and the district superintendent. I Xeroxed copies for Sophie to hand out to classmates. It’s possible, I suppose, that someone associated with the school has actually read it, but not a single person has said so.

I had high hopes. The principal (I really like her) was kind enough to call to let me know she’d received it and that the public information officer for the district was going to send it not just to staff at Sophie’s high school, but to everyone in the district.

A few days later, I received a note from the PIO. (I really like her, too — our paths crossed years ago when she had another job and I was delighted to learn she was working for the district where Sophie attends school.)

She wrote:

“I didn’t end up sending the blog out to all of our staff. I am SO SORRY. I love the writing but I explored your site and some of your blogs use one of my favorite words – the one that starts with f and ends with k. I would be read the riot act if a teacher found that and I had sent it via the district newsletter.”

I get that. That’s why I Xeroxed the letter itself separately for Sophie to hand out. The note continued:

“However, I did write this about you and another mom that I recently interacted with and included it in my staff newsletter. xoxox”

This is what she wrote:

[IN] my World

As the parent of 23-year old daughter, I struggle with my role in her life. I still want to protect and teach as I did when she was little, but being the parent of a young adult requires that I limit these actions. So, when I recently interacted with two parents in our district who reminded me of an important role that a parent must play, I took this experience to heart. Their passionate efforts to advocate on behalf of their children reminded me of the advocacy role required of all parents, no matter the age of the child. I have already used their example to be a better parent to my 23-year old. And, the next time I take a call from an upset parent, advocating on behalf of their child, I will use my experience with Lorie and Amy to also be a better public school employee.

As I told her in my reply, that’s a lovely sentiment and I really appreciate it.

But it doesn’t do anything to educate anyone at Sophie’s school about Down syndrome. I thought about making more copies of the letter and bringing them to the principal and asking her to hand them out — I even told the PIO that’s what I intended to do (she never responded) — but (and this is not really like me) I lost steam and never did it. October ended. Down Syndrome Awareness Month is over.

Of course, as I’ve always been fond of saying, it’s Down Syndrome Awareness Day every day in my house. I’ll regroup, I’ll figure something out. (And I’m open to suggestions.) It’s too important to give up.

In the meantime, for better or worse (some days are definitely worse, high school has proven to be a challenge so far) Sophie is educating everyone around her.

And I take comfort in the fact that she’s the best teacher.

I know that, because she is mine.


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Dear  Teachers, Staff, and Students:

Welcome back from Fall Break! I can’t believe an entire quarter of the school year has already flown by. By now you might have met my daughter, Sophie, who is a freshman. If not, maybe you’ve seen her in the halls, at cheer tryouts, or singing at the school’s recent choir concert.

Sophie is probably the smallest kid in high school. She might hit 4’10″ in her Birkenstocks. Most days she can’t wait to get out of bed and get ready for school — she really hated the middle school dress code, and loves to choose her outfit each morning. Like a lot of kids, she’s not great at math. She really loves her dance elective. Pretty much every day, she eats lunch in the choir room with her friend Tatum. I think she might have a crush on a senior boy. She’s currently debating whether or not to try out for the spring musical, Shrek.

There’s something else you should know about Sophie: She has Down syndrome. Down syndrome is the most common genetic condition but don’t feel bad if you’ve never met anyone who has it; it’s pretty rare. Only about 1 in 700 babies are born with it these days.

As  you already know if you’re in class with her, Sophie is enrolled in regular high school courses; often, she has an adult working with her. It’s awesome that she has this opportunity, we call it being “mainstreamed.” Not so long ago, kids with Down syndrome and other intellectual disabilities were sent away at birth to institutions. They were not raised with their sisters and brothers, or educated alongside their neighbors.

That has changed, thanks to amazing schools like this one. But because this is a relatively new thing, it means that Sophie is a little bit of a pioneer.  Most days, that’s really cool. Every day, it’s a challenge.

Sophie was the first person with Down syndrome I’d ever met. You can imagine how awkward that was for me, since I’m her mom and we met when she was born. So I get it if maybe you’re not quite sure how to approach her — or perhaps need her to give you a little space.

In the last 14 years, I’ve learned a lot about Down syndrome, and, of course, a lot about Sophie. October is Down syndrome Awareness Month, so I’ve put together a list of things that Sophie, our friends and family, and I thought you should know about it — and her. If you ever have questions, you can find me on my blog at girlinapartyhat.com or at amy_silverman@yahoo.com. And here’s a video that explains Down syndrome really well.

Down syndrome is not contagious.

Each of us has 46 chromosomes — 23 from mom, 23 from dad in each of the millions of the cells that make up our bodies. This happens at conception, when the sperm and egg meet. Sometimes science intervenes and an embryo winds up with more chromosomes, or something goes haywire with one.  Down syndrome is also known as Trisomy 21, because it means that a person has an extra 21st chromosome. Sometimes not every chromosome is affected; that’s called mosaicism. Like Sophie, most people with Down syndrome have 47 chromosomes in each of their cells.

Because of this chromosomal difference, people with Down syndrome sometimes share similar characteristics. People with DS are often smaller in stature, have almond-shaped eyes, flat noses, straight hair, and small mouths. They can have hypotonia, which means low muscle tone and extra flexibility (you should see Sophie do the splits!). Sophie has a little more trouble than the rest of us when it comes to tying shoes, buttoning buttons, and handwriting. About half the babies born with Down syndrome have a heart defect (you might have noticed Sophie’s scar — she had open heart surgery at 4 months and again at 4 years, but we’re hoping never again). All people with Down syndrome are affected cognitively, which means learning is more difficult for them, to varying degrees.

Down syndrome is different for every person who has it.

This one is really important. It’s natural when people share a label — and some physical characteristics — to assume that they are the same. But just as that’s not the case with other groups, it’s not the case with people with Down syndrome. I’ve heard staff at the school comment that people with Down syndrome “are all nice” and “all like to high-five.” Not really. I’ve met lots of people with Down syndrome. Some like to dance and sing and act silly; others are quiet and athletic. The stereotype is that people with Down syndrome are loving. Sometimes that’s true, sometimes it isn’t. Just like with the rest of us.

Just like there’s no one out there quite like you, there’s no one out there quite like Sophie, a girl who loves YA novels, YouTube makeup tutorials, Disneyland, shopping, poodles, going out to eat, sleepovers, ballet class, the beach, Project Runway, and being with her cousins — and dislikes spicy foods, chores, riding in the back seat, and hearing her mom sing.

“Sophie’s funny, she’s creative, she’s an artist, she’s motivated, she’s determined, playful, friendly, fun, beautiful,” says her sister Annabelle, who is 16 and a junior at another high school in town. “She’s also sassy and manipulative and bossy but also the best sister.”

Annabelle’s advice when it comes to someone with Down syndrome?

“Get to know them. Talk to them. And don’t care about what other people think.”

People with Down syndrome are often just like the rest of us.

“People with Down syndrome go to college, play in bands, drive cars, fall in love, are DJs and reality TV stars, get their hearts broken, have sex, get bored, play sports, love rap music, need help sometimes, love to help other people, have jobs, get grouchy, own restaurants, are artists, wear braces, love ice cream, have lots of adult friends, are good friends, want to make friends,” says my friend Lisa, whose son, Cooper, is a high school sophomore and has Down syndrome.

People with Down syndrome might learn differently than you and I.

One of Sophie’s long-time instructors explains that often people with Down syndrome “process information differently but are able to learn. When Sophie learns a skill or concept she never really forgets it; she just may not be able to remember it on the spot. Like in a test.”

You can say “no” to a person with Down syndrome. 

Sophie is an amazing self-advocate. From the time she was a very little girl, she’s known what she wanted — and worked to get it. That’s awesome. It’s why she is so successful in so many ways. But in class or social situations, it can mean she comes on a little strong. Just as you would with any student or friend, you can tell her no! In fact, it’s a good idea. Don’t be mean, but also don’t hesitate to be honest. As a family friend put it, “Sophie wants to be seen. Like we all do.” You can acknowledge her but also let her know that it’s not appropriate to interrupt a conversation or insist on answering a question.

People with Down syndrome might not want to talk about it — or have it.

When Sophie was 8, she started telling us that she doesn’t like having Down syndrome. She struggles with it. Like most high school kids, she wants to be just like her peers. If you ask her about what it’s like to have Down syndrome, she probably won’t want to talk about it.

She is happy that I’m writing a list. Sophie wants people to know what DS is. I asked her if there was anything she wanted to say here and she said this:

“Don’t judge the people with Down syndrome.”

 


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“We Still Run In Heart First”

posted Tuesday September 5th, 2017

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I was right. Sophie is okay.

More than okay. She called me after school on Thursday — she’d learned that morning that she didn’t make the freshman cheer line — and before I could ask about that, she launched into a story about a boy she’s got a crush on. Over the weekend she showed off her dance moves on the beach, played with her cousins, ordered too much sushi, and quarreled with her big sister in the back of the car on the long drive home. Teenage girl stuff.

Once or twice she mentioned something about trying out for cheer again next year and instead of saying, “No fucking way,” I smiled and said nothing and waited for her to change the subject. Ditto for when she pulled up photos on her phone of cheerleader costumes for Halloween. Mature mom stuff.

Not that I’m much of a grown up. I’m still plenty pissed, mostly at myself — for thinking that Sophie would make cheer, for tossing her in to compete against her typical peers. But that’s not why I’m here. I wanted to share with you some of the incredibly insightful things other people have had to say in the last few days about competition, friendship, acceptance, and inclusion.

Typically, I don’t recommend reading the comments on anything. But I learned a lot from these. Mainly, how many of my friends on social media also tried out for cheer and failed. But other things, too. Including that there are lots of different perspectives on how inclusion should go down; that it’s not just kids with identifiable disabilities who are getting left out; and that maybe sometimes failure should be an option.

Some days, we’ve got to sit with the fact that we don’t have all the answers. Those are the toughest days. Which is why it’s nice to have so many smart friends.  Here’s what a few people had to say (feel free to visit my Facebook pages to read more –there are good comments on previous posts here on Girl in a Party Hat, too) when I posted about Sophie not making cheer and my feelings about that.

From Lisa, mom of Cooper, who is a sophomore in high school and has Down syndrome: 

I think for those of us with disabilities and raising kids with disabilities, it’s just a bummer that everything that provides good opportunities for socialization, exercise, teaming up, etc has to be competitive. It’s almost impossible to find inclusive opportunities once we or our kids reach high school – we can’t just play for the love of sport, unless we are segregated into disability-only programs.

….Another lingering thought…our kids are BRAVE. By definition, having a physical or intellectual disability means trying and failing pretty much every day, at every stage in life. People with disabilities have to give twice the effort and still don’t “measure up” to nondisabled peers. So the idea that failure is good for us/them doesn’t take into account the real and persistent inequities – big and small – that make up the human experience when your body or your brain work differently.

From Rachel, who is a special education teacher and Sophie’s beloved jazz teacher: 

Okay, don’t jump all over me for this, people, but is it possible that inclusion also includes being given the opportunity to fail? If this was a situation in which Sophie was the only girl who didn’t make cheer, I would be all over it, and I’m sure you would be too, Amy. But… wouldn’t we be just as upset if they put her on the team as their “Special Education mascot?” Wouldn’t that be infuriating, too? Just putting it out there. You know she’s one of my favorite humans on the planet. 

From Janee:

I’ve been thinking about this all night. I think when we talk about inclusion and inclusive practices its hard to imagine, but it’s so much easier when our kids are young. The heartbreak is not that [Sophie] didn’t make a team, but that as she gets older built in opportunities for inclusion get fewer and farther between. I have had this feeling of doors closing when our local softball teams got better and Ruby couldn’t keep up, when theater practice became too loud for her, when Girl Scouts became more mature. It’s hard for us moms to see how they will be included as this gap gets bigger. Just my thoughts. Big hug to you and Sophie!

From Laura:

My oldest has Muscular Dystrophy and tried out for cheer in 8th grade. She can’t jump, run, climb stairs and can’t raise her arms. My career was social service and had been “trained” in dignity of risk. I was gutted throughout the process regardless. (And many times before and since) It tears you up inside yet you smile and cheer those little ‘do anything’ spirits on. Cry in the closet later.

These experiences, for me, seemed unmanageable and yet here we are now, that little warrior and me, no regrets, battle scarred, powerful, experienced. We still run in heart first into adventures cuz we know we will survive whatever the outcome.

Jennifer, founder of our local Gigi’s Playhouse and mom of Kaitlyn, who has Down syndrome and recently graduated high school:

I have so many things to say about this. Kaitlyn didn’t have to try out…I made a phone call to the coach, asked if she would consider the possibility of having Kaitlyn on her team, we met and Kate was a JV cheerleader! Her sophomore year the Varsity coach wanted her….I was hesitant because she loved coach Jane…but Coach Dwayne was adamant. The next 3 years were amazing. For Kate, for her team, for the fans in the stands…it was inspiring. It was humanity at its best. It was young women learning how to hone their empathy and parents giving up the perfect image of what a cheer line should be and accepting it as something even more beautiful than they could have ever imagined. We traveled with the team to Worlds in Orlando and when the team sang “Lean on Me” before their performance they looked for Kate, called her over and held her in the circle. She rarely went to all practices…and sometimes only stayed for half the game. You wanna know who was more impressed than anyone though?!! Me! This was inclusion at its finest. It was leveling the playing field for someone who didn’t choose her diagnosis but wanted a chance to participate. It was coaches and admin bending to meet her halfway. It was young girls who instead of being bullies put their arms around her and chose her when they otherwise might not have had the opportunity….[So many people] changed our lives in ways that made me a stronger mother. That strength led me to open GiGi’s Playhouse [in Scottsdale]. I know you have had so many amazing experiences with Sophie. She is an incredible young lady. She did everything right…now we just need the world to respond accordingly. Love you both–hoping they change their minds. They have no idea what they are missing.

As I responded to Jennifer, I am not going to ask the cheer coaches to reconsider. No way. But I do kind of hope someone shows them — and every other coach out there — what she wrote.

The conversation about inclusion isn’t over. We can’t let it be. My friends won’t let it be. And neither will Sophie.

 

 

 

 


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Giant White Cheer Bow Free to a Good Home

posted Thursday August 31st, 2017

 

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Does anyone need a giant white cheer bow?

This morning Sophie was ready early, waiting by the back door, yelling at me to hurry up so she could get to school and see if she made the freshman cheer line.

“Now remember, you might not make it,” I said as we climbed in the car. “How do you feel about your chances?”

“I know,” she said. “Good.”

I’ll be honest: Even though I warned her all along that she might not make it, this morning as we drove to school, Sophie and I both thought it was a sure thing. Last night Sophie’s nanny (who had been at most of the practices and the try-out) dropped her off and announced that Sophie had nailed all the cheers, that she smiled and that she was one of the loudest.

“All the judges seemed to really like her,” she told me. And with that, I let down my guard, the first thing they teach you not to do at that How-to-be-a-Parent School that doesn’t exist.

I didn’t worry about Sophie’s extra questions during try-outs, or the time she’d made herself the leader at practice, or the fact that she told the coaches it was not appropriate to make the girls run in 110 degree heat. Or that no matter how hard she tries, and no matter how well she learns any kind of dance or cheer routine, she’s always a beat behind.

I knew she was going to make it.

I kissed Sophie goodbye. “Text me a selfie if you make it, okay?” I asked. “I want to see your face!”

She nodded, grinning.

I dropped her with her aide and Sophie rushed off to the activities office. I drove away, already composing a blog post in my head, ready to accept all those virtual high fives on social media.

I still had mixed feelings about cheer — and no desire to attend a football game — but after a few glimpses of how well Sophie interacted with the other girls, how well (aside from not wanting to run, and she was not alone there, and the part where she made herself the leader) she followed directions and learned — and performed — the routines, I was thinking that she had a real chance, and thinking about what an important piece of her development this could be. Of how she might actually make a real friend this year. Of how this school would truly be practicing inclusion, like the district’s special ed director had assured me they would when we spoke last year.

To be fair, that man never guaranteed that Sophie would make cheer. And I would never, ever expect that. But now I need to call myself on my own shit because maybe, this morning, I was expecting it.

A few minutes later, Sophie texted me a selfie. In it, she’s crying. Below it, she wrote  “Nope.”

Oh fuck.

Sophie is okay. And if not, she will be soon. She has drama, ballet, jazz, and swimming after school. She’s in dance and choir at school. She wants to sign up for the Spanish Club.

She can still be in Special Olympics cheerleading.

I will be okay, too. I have to be, right? I’m the one who assured the cheer coach last week that all we wanted for Sophie was a fair shake, a chance to try out. That we’d understand either way.

And now I have to understand.

I’m itching to email the coach and ask how close Sophie got, what my kid did wrong, what she can do better in the future, and — while I’m at it – why on earth they wouldn’t include a kid with so much energy and enthusiasm , who tries so hard, who works twice as hard as anyone else, who knew all the cheers and smiled and wore the giant bow. Why they didn’t include the kid with Down syndrome when all I see on social media are cheerleaders with Down syndrome.

I want to ask everyone at that school just what inclusion is supposed to look like, both in and out of the classroom.

Instead, I’m going to try to say nothing. That is not my strong suit. But we’ve only been at this school for a hot minute, and I need to give this some time, gather some context.

And look, I fully realize that I’m completely biased here. (And possibly slightly unhinged.)

Sophie will be okay.

And if I’m not, that’s okay, too. In fact, it’s probably better. Because it’s my job to ask the hard questions — even if for now I’m only asking myself.

 


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Sophie is trying out for freshman cheer.

Sitting under the fluorescent lights of a big public high school gym for two hours yesterday afternoon, my thoughts veered wildly — from total disgust with our society for condoning (no, make that celebrating) the idea that it’s cool for girls to put on skimpy outfits and jump around with pom poms, encouraging boys to smash their heads into the ground and each other in order to get an oddly-shaped ball over a line, to the extreme envy I’ve felt my entire life, any time I’ve seen a cheerleader.

But mostly I thought about Sophie, and how she’s the bravest person I know.

There are maybe 50 girls trying out  – the gym was packed — and Sophie’s the only one with Down syndrome. (She appeared yesterday to me to be the only one with any sort of disability.) Before they gathered in the gym, the girls met at the track, where they ran a mile. Not every girl made it around four times, but most did. Except for the first few yards, where she sprinted ahead — a tiny dervish in a tank top and brightly-patterned leggings — Sophie was at the very back of the pack. She ran maybe half a lap before stopping to walk, and then trying to stop altogether, before the coaches urged some sweet girls to gently encourage her on.

It was 103 degrees at 5:15 yesterday afternoon in Tempe, and I was a little concerned, particularly when Sophie’s face remained flushed for most of the rest of the evening, even once the girls were sitting in the air conditioned gym and the rest of them seemed fine.

Although she’s very flexible and can do the splits like nobody’s business (thanks to hypertonia, a condition often associated with Down syndrome), Sophie couldn’t do the stretches the other girls did. In the car after practice, she rubbed the spot on her chest where the surgeons sawed her chest open twice many years ago to fix her heart, and said, “The stretching hurt my scar.” But she didn’t complain for the whole two hours. And I only noticed her stick her thumb in her mouth once.

She asked more questions than the others, but for the most part, Sophie was just another girl trying out for cheer. Watching her go through the paces (again, and again, and again — they all had to), her brow furrowed in concentration, I couldn’t help but notice that Sophie tries twice as hard and she’s still a beat behind.

That sounds about right for life in general for Sophie, I thought, my ears ringing with calls for “defense!” and the “1, 2, 3, 4, 5, 6, 7, 8″ I’d hear in my dreams all night.

Sophie has been on cheer lines before, in junior high and Special Olympics, but even though there don’t appear to be any gymnastic skills or tricks required here, high school cheer is different. It’s much harder. The routines are longer, there’s more concentration required, precision expected. The stakes in life are getting higher for Sophie, and for the most part there’s nothing I can do to stop it. I thought cheerleading would be an exception. I tried for months to downplay high school cheer, to dissuade Sophie from trying out, figuring it was totally out of reach and much easier to distract her than risk her trying out and being turned down. I encouraged her to join Speech and Debate instead. She just gave me a dirty look. (I am so uncool.)

After she saw the cheer line at orientation, Sophie was obsessed. As with many things involving my younger daughter, I had no say in the matter.

So I’m on the hunt for all-white Velcro tennies since Sophie still can’t tie her shoes, and this weekend I’ll drag my ass to the mall to buy a giant cheer bow (because both all-white tennies and giant cheer bows are required just for try outs — I will never understand this subculture), and my teeth will remain gritted until word comes back next week of whether or not she makes it.

If she does, it looks like I will be attending high school football games. If she does, I’ll be impossibly proud.

And if she doesn’t, I’ll still be proud. Maybe even prouder. It’s what we all look for as parents, right? The opportunity for our kid to try out for something, to reach and attempt and maybe fail. Or maybe not. I almost robbed us of it, this time, but Sophie wouldn’t let me.

Her instincts might have been spot on. This feels like a comfortable space in which Sophie can excel and make it — or not. I am probably being naive, but I really hope a spot for Sophie wasn’t pre-ordained the moment the coaches heard there was a girl with Down syndrome who wanted to try out. I hope that if she does make it, she’s not just a mascot, a warm fuzzy for everyone else. I hope she deserves a spot. And if she doesn’t, that she’s urged to try again next time.

I am cautiously optimistic after watching the coaches and girls encourage Sophie to run yesterday. I’m trying to feel that way about high school in general, but it’s too soon.

We’ll start with cheer. Final tryouts are Wednesday. As we drove home last night, Sophie admitted she’s nervous, sticking her forbidden thumb in her mouth. “I get it,” I told her. “But either way, I’m really proud of you for trying. Are you proud of yourself?”

She nodded silently, reaching her other hand out for mine.

I’ll let you know what happens.


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Maya was my first real friend who also happened to have a kid with Down syndrome, made difficult but not impossible by the fact that she lived on the other side of the country. And we’d never met.

We found one another’s blogs many years ago, when our kids (her son, my daughter) were barely past the toddler stage (which, remember, happens a little later with kids with Down syndrome). This summer, Leo turns 13. Sophie is 14. And yes, we’ve spent a lot of time texting, emailing, and commenting on one another’s blogs (she calls it “blogging on your blog”) about our kids, about what it means to have an intellectual disability in a world that expects perfection.

But life is never about just one thing, even if that thing looms large and important and keeps you up nights. Maya and I have spent just as much time discussing the relative merits of the musical Rent, and our shared obsession with E.B. White, as we have Down syndrome. Also: how to make a rainbow layer cake. When I mentioned years ago that Sophie’s older sister Annabelle was making a zoetrope for the school science fair, Maya took note and a few days later, a book about zoetropes — written by Maya’s dad! — arrived in the mail. I’ve sent her the girls’ hand-me-downs, particularly if they include rick rack trim (a shared obsession).

Even when we’ve gone months without speaking — life gets in the way — I love knowing Maya’s there, that I can text her about an issue Sophie’s having with friends or a question about where she found bottle brush trees in that photo on Instagram (we are both Jewish but both love Christmas).

Having a kid with Down syndrome shakes the normal out of your life. Having a friend like Maya helps to put it back in.

Maya and I went to the same grad school, studied the same thing, had a lot of the same aspirations. We both went into journalism. We both dreamed of living in New York City. I ran screaming home to Arizona a couple days after graduation. She stayed, and eventually we both settled in the suburbs — although from hers, on one tall hill, you can actually catch a view of Manhattan.

I got to see that view earlier this month, when I took the train out to New Jersey for the afternoon. Maya and I had met a couple of times over the years, but never on home turf. Earlier in the week I’d hunted down the house on the Upper East Side of Manhattan that supposedly offered inspiration for the book “Harriet the Spy,” and this felt a tiny bit like that. I had context, I could now picture Maya in the kitchen making that rainbow layer cake.

And I got to attend the 4th Grade New Jersey Fair at Leo’s younger sister Ellie’s school. Each of the kids dressed up like a native New Jerseyite (there was Bruce Willis, Buddy from Carlo’s Bakery, even a tiny Dorothy Parker complete with pearls and a flask!) and Ellie chose Judy Blume, a particular moment of pride for her mom.

“Oh look, I think she’s wearing a shirt from you,” Maya stage whispered as we took our seats to hear the kids sing. Afterward, as Maya had promised, there was a cake shaped like the state of New Jersey. We cracked up. We also took a walk in a beautiful nature preserve — one of Maya’s favorite spots — and talked about family and our kids and how scared we are about the future. I remember when we met and we’d sweat over kindergarten placement or physical challenges, and parents of older kids would say, “Just wait.” I get what they mean. The ante is upped. In fundamental ways, things are not getting easier as the kids are getting older. I’m grateful to know Maya’s there, just a text away.

And equally grateful to know that she’s there for the rest of the stuff, too — for what it’s like to raise “typical” kids, to discuss kitchen cabinet color choices and vegetable gardens and peonies and everything else in between.


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Listen to Each Other’s Stories

posted Thursday June 29th, 2017

 

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A couple of things are clear. Eventually, the U.S. Senate will vote on so-called health care reform. And it won’t be pretty. Maybe it won’t be as bad as we think, maybe they won’t cut 22 million people from the rolls. Or maybe it will be worse. I write a lot about Down syndrome, but this post is not about that (although really, it’s about every person — including Sophie — who has a pre-existing condition). Today my friend and long time Mothers Who Write workshop student Noan has given me permission to publish a post she shared on Facebook earlier this week. Take a look. Call or write your senator, if that’s your thing. Put names and faces and unforgettable stories out there. They need to be out there. As Noan wrote, “I told [the senators]  I thought the surest path towards understanding and compromise is to listen to each other’s stories. I asked them to please take the time to listen to mine.”

Here is hers. 

Bedtime

I would place the first three medications on a brightly colored plastic plate, then set the plate down on the couch in front of the TV and holler, “Elizabeth, come do your plate.” As she got older, I would frequently recite the purpose of these treatments. “First, do the Ventolin and the Advair to open up your airways. Next, the Flutter device to get you coughing. Coughing is good for you because it moves the mucus out of your airways. And always do TOBI (inhaled tobramycin) last. TOBI is an antibiotic- it fights infection – so you want to breathe it as deep into your lungs as possible.”

My youngest daughter, Elizabeth, has cystic fibrosis. Elizabeth was diagnosed with CF at the age of four months, so for as long as she can remember her bedtime routine has included a series of medical treatments. Every evening, while she and her sister watched their favorite TV shows, Elizabeth did her nightly breathing treatments. And while she was doing her breathing treatments, my husband or I would set up her feeding pump.

When she was eleven years old, Elizabeth had a g-tube (gastrostomy tube) placed into her stomach so she could do nighttime enteral tube feedings. She was tired of feeling tired, she was tired of not growing and as she told me at the time, she was tired of being “that skinny girl.” She had me glue decorative crystals onto her g-tube – the soft, plastic button protruding from her stomach. She wanted to look cute when she wore her bikini on the beach. And she did.

Once evening breathing treatments were done and she was hooked up to her feeding pump, Elizabeth would prick her finger and we would check her blood sugar levels. Then she would take the remaining medications I’d laid out on a napkin on the kitchen counter – a syringe filled with insulin (to treat cystic fibrosis related diabetes), Actigal (to treat CF-related liver disease), oral antibiotics (to treat on-going sinus and respiratory infections), a handful of digestive enzymes (to treat pancreatic insufficiency) and half a cup of magnesium citrate (to treat intestinal blockages).

When Elizabeth was healthy, these were the treatments she did. For her, they were as routine as brushing her teeth before bed. They were squeezed into a childhood filled with sleepovers and softball games, doctor appointments and hospitalizations, cello lessons and prom dates.

Elizabeth is 25 years old now and living in a distant city. I recently spoke with her on the phone. She was with a new boyfriend, visiting his family’s horse ranch. “So, you like this new boyfriend?” I asked.

Yes, she said.

Is he there right now?

Uh-huh.

Okay, so just say a number. On a scale of 1 to 10 – how much do you like him?

Nine, she said.

Before she hung up, I asked her what she remembers about bedtime in our house. We would always read, she said, and then you would tuck me in and you would say that cute rhyme: All tucked in and roasty toasty / Blow me a kiss good night / Close your eyes ‘til morning comes / Happy dreams and sleep tight.

 


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A Midnight Summer’s Dream Come True

posted Tuesday May 2nd, 2017

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The reviews are in for this morning’s eighth grade production of “A Midsummer Night’s Dream,” or, as Sophie kept calling it all semester, “A Midnight Summer’s Dream.”

The production was nothing fancy, held in the library of the public middle school Sophie attends, during first hour drama class. Costumes were makeshift, sets pretty much didn’t exist; there was fidgeting, giggling, and a few forgotten lines. Later I’ll have to google to be reminded of the plot.

It was, without a doubt, the finest piece of theater I’ve ever seen.

Sophie played Hermia, a nice meaty role, and my favorite part of her performance was that she was no better or worse than her peers. They didn’t ignore or coddle her; she was simply another member of the cast. After the show, Sophie sat with some other cast members and ate donut holes and I remarked that they were really including her.

Well, for the moment anyway, Ray replied.

I’ll take it.

As we waited for the play to begin, I looked around and breathed in my favorite library smells, remembering that we’d sat in this same space almost three years ago to the day, gathered for Sophie’s middle school transition meeting. I was so nervous that day, with a list of questions. I worried about what lunch would look like, would Sophie be safe when she walked around campus, would she be able to keep up in science, math and English classes aimed at typical kids?

It didn’t occur to me to worry about whether or not Sophie would be included in a drama class. But, in fact, it was Sophie who noticed halfway through the first semester of sixth grade that only the kids in the gifted academy on campus got to take drama.

She begged for weeks, until the principal of the gifted academy emailed politely to ask me to get her to stop. That only got me started. I complained for years, up the ladder to the superintendent. They started a drama club on campus (Sophie joined but was not included). They started a drama class for the kids in the self-contained special ed program (Sophie is not part of that program).

But as the last semester of middle school approached, there was still no drama class for kids in the general population — not for a kid like Sophie, but equally important, not for the vast number of kids who land in the middle.

In the final days before the holiday break, I got word that there would be a drama class beginning in January. Did Sophie want to sign up?

Today’s production was the result of that. It was absolutely terrific. Clearly the kids had each been pushed in a good way — not just onto the stage but into their own heads, to understand a farce about love so similar to the real-life drama they deal with every day. Each learned a whole lot of lines, and when a line was forgotten they were respectful and helpful to their cast mates. Including Sophie, who reciprocated.

This morning as I dropped her off for the show, I wished her luck, told her not to be nervous, and we exchanged a peck on the lips. She started to walk away, and I stopped her.

“Hey Sophie, do you know who made this happen?” I asked, fully expecting her to say “ME!” — which is the truth, this was all her, as is everything Sophie’s made happen for herself at this school

“US!” she said, grinning.

Hey, I’ll take it. I hear that kids at Sophie’s school are already showing interest in taking drama next year.


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Sophie at The Plaza

posted Tuesday March 28th, 2017

 

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I swear the guy smelled her coming. We had barely set foot in the lobby of The Plaza when he swept up, a slight young man in a dark suit, holding out a small bag of jelly beans.

“Would you like these?” he asked Sophie in his best concierge voice.

She took the bag and examined the pink and white sticker with the little girl in the iconic black jumper on it.

“Where’s Eloise?” she asked.

“Oh, Eloise is in Paris,” the sweet concierge answered, not skipping a beat. His name was Daniel. “She lives here at The Plaza, of course, but she does travel quite a lot.”

Sophie nodded, accepting this. I figured we’d hit the gift shop after that, but the man had stepped behind a counter, checked something on the computer, and was back.

“Would you like to see Eloise’s room?” Daniel asked. Sophie beamed.

For the uninitiated, Eloise does not exist. She’s the precocious main character in a series of children’s books by Kay Thompson, popularized by at least one feature film and I believe some cartoons. Sophie’s read the books and she saw the movie — all many years ago. I was a little surprised she even remembered Eloise, whose story centers around her life and mischief-making at The Plaza.

We were only in New York City for a couple of days, and we’d decided that each of us would choose one thing we really wanted to do. I wanted to visit the Marimekko store. Annabelle couldn’t decide (but I feel okay about this after I bought her a $30 pair of socks at Marimekko). Sophie wanted to see Taylor Swift’s apartment. This wound up involving trips to two boroughs (did you know that there’s a 155 Franklin Street — T.S.’s address — in Tribeca AND in Brooklyn? neither did our Uber driver) and a screaming, crying fit in front of Taylor Swift’s apartment, even though I’d explained beforehand to Sophie that there was no way we’d actually meet Taylor Swift.

Ray wanted to go to The Plaza. He said he’d never been. I lost interest in The Plaza long ago, around the time Donald Trump shut down the Trader Vic’s, but Ray really wanted to see it. After the T. Swift debacle I didn’t imagine Sophie would be into Eloise, but it turned out to be a pretty perfect scenario.

“Certainly she knows she’s not real, right?” I muttered to Annabelle as we crammed into an elevator and headed to the 18th floor. Annabelle shrugged.

Daniel handed Sophie the room key and she opened the door. I’ll admit I was impressed. The Eloise suite was designed by Betsey Johnson, and it features more pink than even I could stand (and pink is my favorite color). It’s pretty adorable.

“What is this, a thousand dollars a night?” I asked Daniel from behind my hand. “Three thousand!” he stage whispered back. Three times his monthly rent in Astoria.

Sophie’s questions were much more appropriate. She loved the whole thing, even wrote a note to Eloise (which she wouldn’t let me read) and put it in a special mailbox outside the gift shop (which we did eventually visit, of course).

In so many ways, Sophie is growing up, and I’m not just talking about the boobs or even the make up and the skinny jeans. She’s maturing. Slowly, slower than Annabelle, but I see it. And yet every time I think that she’s done with the kid stuff — I realize she’s not. I find her watching Peppa Pig or Elmo. She’s dying to see Piglet at Disneyland. She refuses to wiggle her loose teeth (even with the fear of surgical distraction looming) because she’s that afraid of the tooth fairy.

And she was super into Eloise, last week at The Plaza.

Until the day Taylor Swift comes through, I’m more than okay with that.

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What I Learned at Career Day

posted Tuesday February 14th, 2017

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For the first two years, Ray repped the family at middle school Career Day, talking about life as a journalist.

It was a good thing. Really, what would you rather hear about — the time Ray volunteered to be Tased at the hands of the Mesa Police Department or the last dozen “now open” restaurant stories I edited?

I thought so. The kids loved him. And so the stakes were high when Sophie asked me to come instead this year, her final year at this school. She wanted me to talk about the book.

And, as it turns out, about her.

“But Soph,” I asked, “what will I show them?” I didn’t even have a Power Point. There’s always a police officer with a dog at Career Day. This year someone brought a Tesla.

“I will be your prop,” she answered, and proceeded to scam her way out of dress code last Friday so we could dress alike (black dresses, white sneakers, glasses) and visit three classrooms stuffed with middle schoolers.

The night before Career Day, Sophie cuddled up next to me in bed and began a familiar refrain, one I hadn’t heard in quite some time.

“Mama, I don’t want to have Down syndrome,” she said in a small voice. “It makes it hard for me to get around.”

Sophie’s perfectly ambulatory, strictly speaking, but I knew what she meant. Navigating middle school — and life in general — is tough for her. Tougher than it is for most of us. Yes, we all have our challenges. No, most aren’t on the same scale as Sophie’s.

The next morning before school, I told Ray about the conversation and wondered if Career Day had brought this on.

“Of course it did,” he said. “I don’t see why you want to talk so much about her disability.”

But here’s the thing I realized once we were in the thick of Career Day. It’s Sophie who wants to talk about it. I am now worried I haven’t talked about it enough.

In order to discuss the book, we really had to begin with a definition of Down syndrome. Out of 100 or so kids, not one could say what it was. Not even close. “Um, is it something in your blood?” one girl asked. Hey, no judgement. I didn’t know either when I was their age. Mostly because I’d never met anyone with it.

Looking back, I wonder if anyone had ever addressed with these kids the fact that their classmate — in some cases from kindergarten on — is profoundly different? The same in many ways, yes, absolutely, but also not the same. Had they ever even heard the term Down syndrome?

I don’t know.

Last month, I ran into the principal from Sophie’s elementary school and he asked me to name one thing about middle school I wish had been different. I didn’t hesitate.

“The kids,” I told him, explaining that Sophie hadn’t really made any friends in the last three years. “They aren’t mean, not as far as I can tell. They’re indifferent.”

We agreed that it’s the age — middle schoolers are self-conscious and self-involved. Not interested in making friends outside their circles.

Maybe it was my imagination, but standing in that classroom with Sophie on Career Day, I could feel a sense of relief from both my kid and her peers as I explained Down syndrome in very simple terms, as the class came to understand why Sophie speaks differently and sometimes takes longer to master a skill (or doesn’t master it). As I talked, I felt Sophie at my side, nudging me.

“Tell them what I told you last night,” Sophie whispered.

“Are you sure?” I whispered back.

She nodded hard.

“Sophie wants you to know that she doesn’t always like having Down syndrome,” I began. Feeling defensive, I looked around, eagle-eyeing the crowd for snickers or eye rolls.

Instead, the kids were quiet and respectful, watching and listening.

“Here’s the thing,” I said, making it up as I went along. “We all have something about us that we’d like to change, right? Is there something about you that wish was different?”

Around the room, heads began to nod.

It didn’t feel like I said enough, but I wasn’t sure what else to say.

I read an excerpt from the book about Sophie’s kindergarten experience and she handed out book marks. The kids asked some questions about my day job as a newspaper editor. I wasn’t the most exciting speaker of the day — I could hear a Marine grunting and singing in the room next door as I read aloud. But the kids applauded politely; Sophie was clearly thrilled.

And as I left the last session and headed out to my car I noticed someone had scratched a heart onto a classroom door. I decided to take it as a sign — a good one.

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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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