Party Hat

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I have some news.

I wrote a book.

After Sophie was born, it took me a really long time to sort things out, and one of the ways I did it was by going back and reporting her story — our story, the story of what it means to have a kid with Down syndrome at the tip of the 21st century. I am lucky (incredibly, indescribably, amazingly lucky) enough to have an agent and a publisher (thanks, Jenny Bent! thanks, Susan Stokes and Woodbine House!) who gave me wonderful advice, guidance and editing — and ultimately let me do it the way I wanted.

So if it sucks, that’s on me.

It’s the book I wish I’d read before Sophie was born, the book I desperately needed once she was here. It’s a mix of journalism and memoir, and it’s about history, medicine, pop culture, friendship, genetics, education, sports, pre-natal testing — and love.

Sophie named the book and she’s super excited for it. I am, too. I haven’t said anything about it except to the friends and family who have heard about it non-stop (and if you think I’m kidding, ask them) and so I’m thrilled to make this announcement.

There will be a launch party at Changing Hands in Tempe on May 1, and more events to come. I’ll announce them here and at my new web site, myheartcantevenbelieveit.com.

I’ve had this little blog for many years (eight in May!) and I’ve never decided just exactly whom the girl in the party hat is. Usually it’s Sophie, but sometimes it’s me. Ditto for the title of this book — she said the words — but when I think about my wonderful family and how lucky I am to get to tell our story, my heart can’t even believe it, either.


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Party Hat

Tangled

posted Wednesday February 3rd, 2016

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Yesterday I ran into the vice principal at Sophie’s middle school. I adore this woman, who ushered my tiny girl into cheerleading and is one of many who look out for her every day. After we had such an incredible experience in elementary school, I never thought I’d get comfortable with these people at this big, scary junior high. But they love Sophie and I love them.

“I’m so excited!” the vice principal told me. “Sophie’s gonna let me do her hair the Friday before Valentine’s Day!”

She explained that she has already bought fancy hair ties and ribbons, then asked, all casual, “Can you send the brush and detangler to school with her that day?”

I smiled and winced, picturing Sophie’s hair that morning when I dropped her at school — snarled, all over the place, a “style” that could (very) kindly be called bed head.

I love the bed head look.

It’s pretty much my only fashion statement and the day I realized 20 plus years ago that my wavy/curly hair looks best if I don’t touch it was a great day. No more curling irons, blow dryers and cowlicks. Wash and wear, with the right product (that last part is key). I haven’t brushed my hair on a regular basis in years; currently I haven’t touched it in months.

Ray doesn’t brush his hair, either. Annabelle, who has a better version of my hair, pretty much shakes hers after the shower  – and goes.

Sophie’s hair is different, fine and stick-straight. It’s gorgeous hair, hair that needs to be brushed all the time.

As you might imagine, she prefers the dad/mom/Annabelle method. Hence, the near-dreadlocks.

As I sit here in the living room, typing, the house is still quiet. I need to get up and make coffee, let the dogs out, urge the others out of bed. Annabelle and Ray won’t need much coaxing, and they’ll be out the door soon. Sophie will require cajoling, begging, bribing — her Carnation Instant Breakfast shake and thyroid pill delivered in bed and a toasted bagel with butter and cranberry juice at the coffee table; then frequent sweetly worded reminders (then yelling) to get her to put on the clothes I put out for her. Then more yelling to get her to brush her teeth, to find her ID and glasses, to quit digging for more mechanical pencils (she sneaks and chews the erasers), and to stop switching out backpacks as we are walking out the door with seconds to spare.

More often than not, I catch a glimpse of the crazy-messy back of Sophie’s head as she’s climbing out of the car and that’s the first time I realize I haven’t even tried to make her brush her hair.

It’s a big deal. It’s important that Sophie look her best (that we all do, but particularly a kid with special needs, who has enough to deal with already) and once again, I’ve failed her.

But her head is extra-sensitive (thanks, Down syndrome) and more than that, it’s just one more thing she has to endure that the rest of us in the house don’t.

The vice principal grinned. She has a vision of making tiny buns all over Sophie’s head, shaped like a heart for Valentine’s Day. I grinned back, thinking, “Good luck with that.”

All hair advice is welcome. I’ve tried everything from olive oil to fancy brushes to threats of haircuts and bribes. Sophie insists that she wants her hair to look like mine, that I don’t brush it and why should she. It’s hard to argue with the logic. And hey, it’s a nice compliment.


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Party Hat

Visions of Rosebuds Danced in Her Head

posted Sunday December 27th, 2015

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In our Christmas-loving house, the days following Dec. 25 can be a sugar-coated letdown. But one member of the family is clearly relieved that the holiday is over. Sophie never really did embrace the Christmas spirit this year — which is weird, considering she’s always been my Santa-believing, carol-singing, present-obsessed kid. But this year she refused to watch Elf and begged me to take down the tree as soon as the last gift was opened on Christmas morning.

It could be that her belief in Santa has morphed into a healthy fear of Santa, or, more likely, that — seeing how much I love Christmas — Sophie decided this year to push back. Maybe it’s just 12-and-a-half-year-old hormones.

In any case, there’s one thing I know she’ll miss about the holiday season: Snow Queen.

We are a ballet family, but my girls don’t dream of sugarplum fairies, or long to be Clara. No Nutcracker for us. Instead, each September Annabelle and Sophie cram into a classroom at their dance studio with kids from all over town to audition for Snow Queen. This original Phoenix production doesn’t involve Swarovski crystal-studded costumes or perfect rows of soldiers. But my kids and their classmates adore it, and others do, too — performances sold out this year, Snow Queen’s 25th season.

Every year, dozens of little girls dream of being the rose princess (a grown-up role played gorgeously by one of my mom’s former students), or at least of being a rosebud, one of four tiny dancers poised behind the princess as she casts a spell over a pile of rose petals that will eventually help Gerda, the heroine, rescue her hero Kai from the evil Snow Queen.

This was Sophie’s fourth year in Snow Queen. By the time Annabelle was her age, she’d been a rosebud several times, and had already moved onto other parts. But Sophie is still the size of a 6-year-old, and was cast in less-demanding roles. The rosebud role is not easy — it requires real ballet skill and,  perhaps more important, the ability to stay still for hunks of time. That’s not easy for my nose-picking, crotch-tugging, wave-sneaking Sophie.

The rosebud is my favorite role in the show. My mom always rehearses the rosebuds and for years, before I had my own kids, I watched her ballet students hit that releve at the end of the dance in unison with the rose princess, arms in synch, waving gracefully as the lights dimmed. My eyes always teared up, and when I finally had my own little girl, I sobbed, watching Annabelle point her toes and wave her arms.

I braced myself, positive Sophie would never be a rosebud. She started late and took on smaller roles — a goofy sprite, a sweet village lass. I think she and I were both prepared for her to be a sprite again this year when I heard that Sophie was going to be considered for rosebud.

I know we were both nervous, the day of auditions. Sophie nailed it — no fidgeting, she got all the moves right. From the beginning it was clear that this role was a stretch, and Sophie worked hard; my mom burned the music on a CD and Annabelle ran the dance with her sister in our kitchen, calling out the moves, snapping her fingers to keep time.

Some days, Sophie didn’t want to rehearse. She snuck into the room where the sprites were practicing. She was teetering on the edge of her comfort zone and I wondered, was this a good idea? Who are we doing this for? But just when I thought she’d give up, each time Sophie pulled it together, asking me to turn on the music. Sometimes she’d make me leave the room; other times she’d ask me to videotape.

The morning of the first day of the show (the girls perform four times in a weekend, twice on Saturday and twice Sunday) my mom called to remind me to have Annabelle do a run-through with Sophie. She did — several times — and we headed downtown for costumes and make up. Annabelle was a grown-up lady in waiting, dancing with the big girls. Sophie took her place with the other tiny ballerinas.

I sat in the audience for the first performance, holding my breath as the too-familiar music began. There was Sophie, dancing the role that so many of my mom’s little girls — including Annabelle — had danced before her. As far as I know, she’s the only kid with special needs who has ever taken the stage during Snow Queen, certainly the only one with Down syndrome, and watching her go through her paces onstage that afternoon, I wondered how obvious it was. Like many people with Down syndrome, Sophie sticks out her tongue when she concentrates, and she was concentrating hard. She knew every move, but her technique was choppy, as though she doesn’t always have complete control over her motor skills — which she does not.

But she had moments of real grace, too, instances where it was clear that Sophie comes from a ballet family, just like Annabelle, a line that most definitely skipped my sister and me but that extends back to my mother, their teacher. Watching her rehearse the rosebud role this fall, noticing the position of her fingers or the way she stretched her leg, and how much she truly loves to dance, I realized that for the first time in her 12-plus years, I wondered what Sophie would be like if she didn’t have Down syndrome. For all my struggles to accept the fact she had it, I’d never tried to separate her from it, never wondered if she’d dance like her sister if she had 46 chromosomes instead of 47.

She did it, that Saturday afternoon. Sophie danced the role of the rosebud beautifully, gracefully, with her own flourishes for sure, but she did it. I could breathe again.

Saturday night, the whole thing fell apart. At 12, Sophie was much older than her fellow rosebuds, and I’m not sure exactly what happened — a late night, some understandable confusion, I was backstage and didn’t see the performance — all four of the little girls were off. The director, Frances Cohen, my mom’s business partner, swooped in, grabbed Annabelle and sent her to the costumer.

On Sunday, Frances announced, there would be five rosebuds. She was double-casting Annabelle.

“Oh shit,” I thought, knowing better than to say a word. Annabelle, who had been called in plenty of times to fill in for a sick or missing rosebud, but never to be a fifth, also kept quiet, but I knew she was not happy.  She didn’t want to upstage anyone, least of all her sister.

But the director’s word is final, and, as it turns out, Frances was right.

The next afternoon, Annabelle took the stage with the others girls, standing in front so they could follow along. All five danced beautifully. No one seemed upset, least of all Sophie, who was clearly thrilled to be onstage with her sister.

That night, during the final performance, there was a moment during the dance where all five rosebuds spread their arms, leaning in to watch Gerda and the rose princess, and — clearly unable to help herself — Sophie slowly reached out her fingers to touch her sister’s hand.

I cried. I cried because, come on, that was the sweetest fucking thing I’ve ever seen. I cried because both my girls danced beautifully. I cried because I know this is not the last time Annabelle will need to take the stage — in some form — to help her sister.

Two weeks later, we’re all still covered with glitter from the stage make up, but my mom and Annabelle have moved on to talking about the spring ballet recital.

Sophie, however, isn’t quite done with Snow Queen. On Christmas morning, after the presents had been ripped open and the stockings emptied, Sophie snuck out of the living room. Through the kitchen door, I caught a glimpse of a leap, then swooping arms. It took me a moment to realize what she was doing.

The rosebud dance.


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Party Hat

Maybe Sophie Knows Best

posted Thursday November 12th, 2015

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Today’s one of those days where I wouldn’t mind having a good cry.

Not a burst-int0-tears-at-the-drop-of-a-hat cry, but the kind you schedule, like Holly Hunter’s character in Broadcast News — where she sits on the bed in the hotel room, unplugs the phone, takes a deep breath and lets it rip.

It started this morning when I stumbled on the fact that not only do the gifted kids at Sophie’s school get to take drama, they also have a journalism elective.

I guess that makes sense, I chuckled to myself. Given the state of my chosen profession it will take only the best and brightest to get us out of this mess.

No journalism for Sophie, or the rest of what I call the “general population,” the kids who didn’t test into the gifted school-inside-a-school. All the kids on campus — gifted or not — can take choir, band, visual art, home economics, computers, Spanish and P.E. But other electives, like drama, sustainability and journalism, are “project based” and reserved for the gifted kids who passed a special test.

Sophie really wants to take drama. And, now that it’s come up, journalism.

“I’m going to talk to the [principal of the gifted school] about it again today,” she told me in the car this morning.

“Oh no, please don’t. You’ve already –” I began. Then I stopped. “You know what, Sophie?” I said. “Say whatever you want.”

Maybe Sophie knows best. I’m beyond knowing what to do. Last week, she made the junior varsity cheer squad. I found myself wondering whether she would have been chosen if there’d been a way to mask the fact that she had Down syndrome from the decision-makers — if her loud voice, memorized cheers, coordination, ballet-inspired grace, high kicks and ability to do the splits would have gotten her in. Her merits, with no qualifications. I’ll never know. The skids were greased. And not in a bad way, necessarily, certainly with the best intentions. But they were greased.

Now the question is, where else to get slick? And that is what has me wanting to cry, because I don’t know the answer. Am I pushing too hard, or not hard enough? What is Sophie capable of? What does she need? When do all the requests for equality get obnoxious? Where is the fucking instruction manual?

After weeks of pleasant conversations at the district level, I’ve made no progress beyond the promise that maybe someone will sponsor a drama club again this year for all the kids at Sophie’s school. It doesn’t appear that anyone’s willing to budge on the question of fairness — explaining why the gifted kids get more options than the non-gifted ones. If a gifted kid can take Home Ec, why can’t Sophie take Drama?

And so I’ll take it up the ladder, hoping the conversations will stay pleasant, but knowing that’s not likely if I have a hope of achieving anything. (And by achieving anything I’m not referring to just Sophie — this is unfair to the hundreds of typical kids who also attend that school and have limited options for electives.)

It doesn’t end there.

Sophie’s been asking for a while why other kids at her school are going on an out-of-town trip to tour colleges. I mentioned it to a couple of staff at the school, who decided Sophie should apply to the program, which is designed for college-bound kids. (Which is sort of depressing — why aren’t all, or at least most kids considered college-bound in middle school?) So now I have another form to fill out. I don’t mind the paperwork, but I’m worried about the implications.

Every week, it seems, a new college program for people with developmental disabilities pops up. So  yes, Sophie will be able to “attend college” in some form. But will it look anything like that out-of-town college tour? Hard to say. Am I just setting her up, showing her what will never be hers?

It reminds me of the conversation I had with her ballet teacher (who happens to be my mom) when I pressed on the issue of whether Sophie would ever be able to dance on pointe. My mom emailed back with a detailed explanation of the physical reasons it would be dangerous, and concluded, “Sure you could put her in a pointe shoe with lots of gel and stand her at the barre but it would be wrong in every way, especially that it would give Sophie hope that’s not realistic.”

For me, that ended the pointe shoe chapter decisively. I still look at pictures of friends’ daughters getting fitted for their pointe shoes with a little sadness, but both Sophie and I have moved on. (At least, she hasn’t mentioned it lately.)

But drama class, journalism class, the dream of attending an awesome college — those are not physical like pointe shoes, they are tougher pages. I’ll need Sophie’s help to turn them.

As I was sitting down to write, a friend posted this on Facebook:

“If disability awareness does not lead to inclusion and full integration and parity, then it is little more than tokenism.”

She’s right. Some days I think that if I see one more television news story about a young person with Down syndrome being elected homecoming king or queen, I’ll scream. I like the fact that people with Down syndrome are modeling, bring awareness and diversity to the runway, but I can’t help but think, “Really? That’s the best we can do?” And I’ll always be conflicted when it comes to cheerleading, no matter how much Sophie loves it.

But none of this is as simple as a status update. Putting Sophie on the cheer squad isn’t enough, I know that. So just what is enough? What does integration and full inclusion and parity look like? Where do we compromise and where do we refuse to stand down?

I don’t fucking know, and that’s the part that has me frustrated.

But I put on mascara this morning. So I’ll have to schedule that cry for another day.


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Party Hat

Please Don’t Tell My Kid She Can Do Anything

posted Sunday October 4th, 2015

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Sophie has been really into groceries lately.

Not eating them. Her four food groups are still rice, noodles, cheddar crackers and chocolate ice cream. I’m talking about groceries in the grocery store.

It began at Trader Joe’s about a year ago, when she developed an interest in scanning all the items in our cart. Not one to take no for an answer, Sophie didn’t even ask — just shoved the clerk aside and began pulling out wedges of cheese and baskets of strawberries, waving them over the censor and reaching for more while I did that Mom-Dance on the other side of the counter: “Is that okay? Are you sure it’s okay? Sophie, you better hurry, the line is getting longer. Let the nice man –”

Oh forget it. I began to seek out particularly cheerful-looking clerks and hoped for the best. Sophie walks out with a handful of stickers and a grin every time.

Last week she upped the ante at Safeway. We were grabbing a few items before a dinner party, so I hustled her through the store and past a million temptations (“Mechanical pencils, can I have those? And I really need a cute binder for choir. How about more cheddar bunnies? Can we go to Starbucks PLEASE?”) and into line, gratefully accepting her help when it came time to unload groceries onto the conveyor belt.

At 12, Sophie can still barely reach, but she was determined, stretching all the way over till it looked like she might actually flip herself into the cart if she wasn’t careful. But she’s always careful.

She couldn’t get around to the clerk’s side to scan items and her braces mean no chewing gum, so Sophie was clearly at a loss for a few moments for something to do or ask for, as she stood at the checkout counter. I was distracted, digging for my debit card, swiping, donating a dollar to the day’s charity because I’m that superstitious, when I noticed Sophie was no longer by my side.

I found her quickly. She’d moved to the end of the check out counter, and was quietly bagging our groceries.

I froze. “NO!” I wanted to yell. “DON’T DO THAT!”

From the beginning, when we first learned she had Down syndrome, I’ve been telling everyone who will listen how determined I am that Sophie never bag groceries.

It’s not that I have anything against grocery baggers. It’s honest work. And over the years, as I’ve discreetly (I hope) observed other people with intellectual disabilities bagging groceries, I’ve come to understand why it’s such a good job for so many. It’s done in a public place with constant supervision, bright lights, a lot of activity. The work is not easy and you’ve got to do it right or the eggs get broken, the bread gets smushed — so it’s valued, and that’s good. There’s conversation, music, community.

I still don’t want that to be Sophie’s only career option. I want her to do — well, anything she wants, right? Isn’t that every parent’s dream, what we whisper to perfect little babies as they sleep? “You can be anything you want to be!”

As far as I’m concerned, that’s a shitty thing to say to Sophie.

Lately I’ve heard a lot of talk about college programs designed for people with intellectual disabilities, and I think it’s awesome. I am confident that Sophie will be able to attend one, or do something else similar. It won’t be the same as what her sister Annabelle gets to do, there won’t be the same range of choices and brink-of-adulthood freedom — and Sophie will understand that.

And then what? What I don’t hear much is stories about people with intellectual disabilities having a lot of job choices once they do finish school. I’ve come to realize that it’s not so much that I don’t want her bagging groceries and more that I don’t want that be her only option.

But you know what else I don’t want? I don’t want anyone telling me that my kid can be whatever she wants. And I don’t want to tell her that, either. Because it’s a fucking lie.

I have a low threshold for inspirational sayings on a good day. On a bad one — keep me away from the Facebook Down syndrome groups and the memes in general. The other day someone posted an image of a cute, chubby boy with Down syndrome holding a sign saying, “I can do anything.”

Look, not to put too fine a point on it but I can’t do anything, either. Who can? I don’t see typical kids holding signs that say that because everyone knows it’s bullshit. About the only place it pops up for the rest of us is on the occasional fortune cookie. But for a little kid with Down syndrome it’s cute, because really, what sort of things will that kid want to do anyway? It’s safe, the kid doesn’t really get it, and the parents feel great. But really, what’s the point of the hyperbole? It might make you feel good as you scroll through your feed but in real life it’s just gonna kick you in the ass when you’re down.

Right?

I stood at the check out counter, debit card dangling from my fingers, staring at Sophie as she calmly bagged our paper napkins and instant pudding. How did she even know what to do? Is this, like, her birthright? Is it a genetic thing, that she’s drawn to this? I’ve never seen Annabelle do it. I know I never did.

I shook my head hard, grabbed my receipt, the bags and her hand, and headed out of the store.

Maybe Sophie will bag groceries for a living, I thought as we climbed into the car. Maybe that’s really what she’s suited for, what she’ll want. It’s so hard to know now. Or maybe she’s just a kind and helpful person — and a bit of a control freak.

Twelve is a hard age. Sophie is beginning to show physical signs of adulthood but she’s still such a little girl — twirling her hair, sucking her thumb, watching Peppa Pig. I’m pretty sure she was the only seventh grader who held her mom’s hand at “Take Our Parents to School” day at the junior high this week.

When I was searching for just the right junior high, a special ed teacher at a charter school who bragged that she had 20-plus years of experience with kids with special needs told me with great confidence that kids with Down syndrome stop progressing intellectually at 12. I looked it up and saw how controversial (and unproductive, not to mention hurtful) that comment was and soldiered on, ignoring it — for the most part. Sometimes it creeps back in, on a particularly bad day.

There are fewer and fewer bad days (knock wood) and Sophie keeps learning and growing. She is making friends (sort of), she is keeping up at school, her conversations are getting so mature and so (very slowly) are her television choices. She doesn’t always pitch a fit when I tell her to get in the shower or pick up her clothes (though she might be annoyed in an appropriate tween-y way) and the other day, when she overheard me telling a friend I needed to make a Power Point presentation for a conference I’m attending and admitting I’ve never made one, Sophie called from the backseat, “I’ll help you Mom. First thing you need to do is pick a background.”

So what background do I pick for Sophie? I guess it’s somewhere between “all cognitive growth stops at age 12″ and “you can be anything.” Finding that place is going to be a lot harder than building a Power Point presentation — even with Sophie’s help.

 

 


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Party Hat

Conversations with Sophie

posted Monday August 31st, 2015

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For as long as I can remember, Sophie has loved to talk on the phone. She can certainly hold down her end of a conversation, if she’s the topic. But lately I’ve noticed a sea change.

Sophie is engaging with the person on the other end of the conversation in ways I’ve never heard. For years I’ve hovered in the background and stage-whispered, “Ask, `how are YOU, Aunt Jenny?’” or “How was YOUR day, Papa?” and suddenly — it feels like overnight — she’s doing it herself.  She’s asking questions and she’s interested in the response.

She hasn’t mentioned it or acted like she’s noticed, but from my perspective it’s a new chapter for Sophie, an important sign of maturity. Apply it to text messaging, and — wow.

This weekend we drove to Flagstaff to spend the night at my parents’ house. I promised my mom we’d let her know when we arrived home safely, and crashed on the couch before remembering I hadn’t called — so I asked Sophie to do the honors.

This morning I picked up my phone and found the exchange posted above. She didn’t just tell my mom there was a dust storm, she engaged her, predicted her feelings, and wrote about it pretty darn eloquently.

I never thought a text message could elicit such pride.


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Party Hat

Acting Up

posted Friday August 21st, 2015

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In the end, I did not bring food to the first team meeting of the school year. Or a lawyer.

Instead, I brought Sophie.

It was not a tough meeting; I hadn’t expected it would be, or I likely would not have brought her. Sophie’s formal IEP meeting takes place each spring, and because so much can change in a few months, a long time ago I asked that the IEP require that a meeting be held within the first month of school. It’s been a really valuable tool.

We tweaked a few testing modifications and talked about lunch time procedures. Sophie interrupted several times, despite sharp (but, I hoped, kindly maternal) glances from me, and finally the speech pathologist jumped in and stage-whispered very loudly, “Do you want me to make this one of her goals?”

I nodded, my face hot. No one else in the room seemed bothered by Sophie’s excited questions and comments; I guess they are all used to it, used to her. Maybe more than used to her.

Mainstreaming a kid like Sophie is such a new thing at this school, a school that already has so many challenges, left with the kids who don’t qualify for the fancy gifted academy next door, whose parents haven’t sought out high-browed charter school options. This school, which is obviously starved for resources, with shabby edges and the challenges every public school faces today, has embraced my eager but challenging kid and given her the tools she needs to thrive.

Except for one.

Math, science, reading, social studies — Sophie’s getting it all, plus choir and visual art. It’s pretty amazing. But she’s made it clear that it’s not enough. She wants what other kids are getting. She wants drama class.

And so at the end of the meeting, I shifted awkwardly in my chair and made a little announcement. I know this has nothing to do with anyone at the school, I began, but I don’t want anyone to be blindsided, then explained that I’ll be approaching district administrators with my request to get Sophie (and any other kid from her school who wants to be) placed in a drama class at the gifted academy next door.

Some background:

When Sophie began middle school in sixth grade, she quickly realized that drama class was not among the elective options for students at her school. But it is for the kids at the gifted school. To complicate matters, the kids at the gifted school can take any elective offered at Sophie’s school; that is not reciprocal.

Sophie figured all this out before I did. She cornered the gifted school principal in the cafeteria at lunch and bugged him about this for months, to no avail. Ultimately I wrote a note to both principals and was told that no, this was not an option. You must qualify as gifted to take a class at the gifted school, even if it’s drama and not, say, pre-calculus. Sophie and I both tried to accept this, and took the options offered — including a not-great attempt at starting a drama club (which all but excluded Sophie) and the suggestion I sign her up for summer camp (that was a great week, but not enough).

I thought about it all summer, I told the team, and I have to say something. I haven’t done a formal analysis, but I’m willing to bet that the racial and economic breakdown at the gifted school looks a lot different from the racial and economic breakdown at Sophie’s school. Down syndrome aside, this is simply unfair. These gifted schools are segregating kids in dangerous ways that have flown under the radar — and someone needs to say something. Perhaps it’s easier for me, the parent of a kid whose entry into this school was never in question.

Plus, I don’t have a good explanation for Sophie as to why she can’t take drama. It doesn’t make sense to either of us.

And so, game on. Now the only thing to decide is what to bring along to that first meeting with the district administrators, assuming I get one. Food, the lawyer, Sophie? Maybe all three.


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Party Hat

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Sometimes you’re moving along through life, feeling like you have certain things down, know others to be true, and something happens that just completely rocks your world and makes you question everything you’ve done as a parent.

Or something like that.

A few days ago, a Facebook friend and fellow parent of a kid with Down syndrome posted an article about the relative merits of bringing food to IEP meetings. I stared at the computer, mouth literally hanging open.

Before I go any farther, let it be said that I am 100 percent in favor of gifts, including food, for everyone at my kids’ school from the crossing guard to the principal. Back to school gifts, teacher appreciation gifts, Christmas cookies, valentines — I’ve even been known to send round challahs during the Jewish holidays.  I like to connect on a personal level with the people who spend so much time and effort on my kid and ours is not a school where a lot of gift giving goes on, for whatever reason. As far as I’m concerned, teachers should be showered daily.

The gift giving argument is one for another day, though. I’m talking more specifically today about food at IEP meetings.

The IEP meeting is federally mandated and designed to create a document that gets a lot of scrutiny — a roadmap, in essence, for your kid with special needs. It’s arguably one of the most important sessions of the year. I’ve been through many, with a kid in seventh grade, and I can say that I’ve had my share of contentious IEP meetings, as well as uneventful and even a few downright pleasant sessions. But never with food.

To me, that’s like eating in church, one of the few times of the year when I have no appetite.

It never occurred to me — the one who made it my business to know the kindergarten teacher’s standing order at Starbucks, the principal’s dietary restrictions — to bring food to an IEP meeting.

Instead, when Sophie was in third grade, I started to bring a lawyer.

It would have been a lot cheaper to bring a bagel platter.

Do you bring food to IEP meetings? I’ve got one next week.


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Party Hat

The Eyes Have It

posted Tuesday July 21st, 2015

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I’m not sure when it happened — maybe it was always the case and no one noticed — but suddenly, Sophie’s eyes are two different colors. It’s subtle, but it’s there. One is greenish, the other blueish.

I pointed it out to her the other day, tried to get a closer look, and she pulled her head away, scowling. For a moment I wondered why, then I got it.

“You know, Sophie,” I said, “having two different colored eyes is not a Down syndrome thing. It’s a Sophie thing.”

Big grin.

To be honest, I’m not sure if it is a Down syndrome thing. But I’m not going to Google it. Not this time.

(Photo and makeup by Annabelle.)


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Party Hat

Travels with Sophie

posted Thursday July 16th, 2015

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Turns out, Sophie was born to travel.

She doesn’t get car sick, has no anxiety about flying, can sleep just about anywhere, and while she doesn’t pack light, her things are so small they never take up much space. She is pretty easy to feed as long as there’s bread, rice or some form of noodle on the menu; all she really wants is a to-go cup with a lid, preferably filled with cranberry juice but she’ll compromise.

And she loves hotels. Most of all, Sophie loves the front desk clerks at hotels. Maybe she’s got it in her blood (until recently, my family on my father’s side ran a hotel) or maybe it’s just because she is at her best with a captive audience.

She charmed so many staff members so quickly at the Ace Hotel in Portland a few weeks ago that by the time we checked into our room, there was a handwritten postcard and salt water taffy waiting for Sophie, wishing her a fun time. Later, a clerk overheard me admonishing Sophie for trying to score another free toothbrush and reached around me, silently handing her one. Without being asked, the bell boy produced a cardboard envelope to hold Sophie’s photo booth loot. It was out of control, in the best ways.

Then we got to San Francisco. Sitting in the lobby of the Hotel Triton, watching a young hotel employee teach Sophie to hula hoop, I started thinking about how we could make this a lifestyle. By the time that clerk had returned from the drug store with a coloring book and crayons for Sophie (no kidding and yes, I gave him a giant tip), I had an idea.

We should start a blog, call it Travels with Sophie, and make it all about her adventures — dancing in Jackson Square in New Orleans, walking Goofy down Main Street at Disneyland, doing the splits for President Obama in front of the White House. It would be great! Because Sophie is at her most awesome when she’s out in the world, soaking it up and letting it soak her up, too.

The next day we woke up and took a trolley to the Castro, wandered through the most incredible variety store (Cliff’s) I’ve ever seen, and stopped at a restaurant for lunch. Ray wasn’t with us in Portland, we’d joined up the day before in San Francisco, and he wasn’t as into Sophie’s super-friendly ways as I was.

Now I must pause to say that I totally get that. Sophie can overstay her welcome, and more important, there are some Stranger Danger and general etiquette lessons to be taught. So I don’t blame Ray for scolding Sophie gently after she’d asked the waitress what might have been her fiftieth question. And I didn’t think much of it as we all proceeded to finish our lunch.

A few minutes later, we’d paid the check and I took Sophie to the bathroom. I was still humming away, thinking about our future travels, high on vacation, when Sophie asked me, “Hey Mom, will I have Down syndrome my whole life?”

I felt my mood shrivel up and drift away, like a popped balloon.

“Yes, you will.”

“I don’t want to have Down syndrome.”

I didn’t know what to say, so I hugged her. It wasn’t the first time she’d told me she didn’t want to have DS, but it had been a while. Every day, it seems, I get more comfortable with the fact that she has it; not so for Sophie, apparently.

We walked out of the bathroom and Sophie picked up where she’d left off with the waitress, comparing notes on favorite TV shows, and we met up outside with Ray and Annabelle. The rest of the trip was filled with candy-making, browsing in Chinatown, walking (part of) the Golden Gate Bridge, then driving to LA, where Sophie charmed another set of clerks, securing free books from the hotel library and eliciting whispers of “Look at her! She’s so cute!”

And she was, strutting through the hotel lobby in one of her several wardrobe changes of the day, free from school dress codes, hard tests and unfriendly junior high peers. But not free from Down syndrome. That goes with her wherever Sophie goes.


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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome will be released by Woodbine House in May 2016. For information about pre-orders and events, click here.
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