Party Hat

Why I Sort of Hate World Down Syndrome Day

posted Saturday March 21st, 2015


Today is World Down Syndrome Day.

All week long, my Facebook feed has been filled with posts by devoted, prepared parents going to their kids’ schools to educate others about DS. They are bringing blue and yellow (the official Down syndrome colors, I’m not sure why) iced cookies, wearing blue and yellow tutus, printing tee shirts, hanging giant banners in their communities and otherwise doing an amazing job of educating others about the most common genetic disorder, Trisomy 21, in which a baby is born with a third 21st chromosome. (Today is March 21 — get it? 3/21.)

It’s a lot of pressure. One day, the entire world. Too much.

Or is it that it’s not enough? Everyone and everything has an official “day” these days (when I signed on to Facebook this morning a friend had declared it “International Eat Ice Cream for Breakfast Day” and for a minute, she got me). I know it’s important (things like Down syndrome, not things like ice cream, though the people who market the stuff would tell you it’s very important) but all these days have put me in a daze. I’m kind of done.

But I’m not done with Down syndrome.

In our house, every day is World Down Syndrome Day — whether we like it our not. (And don’t worry, we love it almost all the time.) One thing I’ve learned in Sophie’s almost 12 years is that when you have a kid with Down syndrome, the process of educating others (and yourself) is constant — as it is with any kid, but particularly with one who comes with a set of sometimes unusual behaviors and characteristics.


And sometimes, the best education comes when Down syndrome isn’t even mentioned at all. We spent several days during Spring Break in New Orleans, and I saw just about everything in the French Quarter — except for another person with Down syndrome. You might consider that a good thing given the debauchery of the place (and we saw some of that, too) but it made me sad. Hundreds, thousands of people enjoying wedding parades, brass bands, beignets. Where are the people with DS? It’s a question I’ve asked before when we’ve traveled with Sophie. (Disneyland is the grand exception.)

I don’t think I heard any of us or anyone else utter the words “Down syndrome” the whole weekend, but Sophie offered her own lessons by engaging with shopkeepers and servers, other tourists, the startled clerk at the front desk of our hotel. Unable to contain herself, she stepped out in front of a band playing in Jackson Square and rocked her best dance moves, earning cheers and a $20 tip from another dancer. All night long, all over the French Quarter, people stopped us to ask, “Is she yours?” And to say, “She’s amazing.”

“She is,” I wanted to say. “And you know she has Down syndrome, right? You know what that means?” Instead, I just smiled and said thanks.

It’s a 365-day-a-year education process, whether you have ALS, use a wheelchair, or have DS. That’s something I want to acknowledge today, for all of us, not just those who have a kid with Down syndrome. As a wise friend once said to me, “We all have something.”

That said, I have to admit that I’m a little jealous of all the blue and yellow today. I do love a reason to celebrate. As luck would have it, Sophie’s friend Tatum (who also happens to have DS) is spending the night tonight. I might have to make a cake.

Party Hat

Pinch Me

posted Tuesday March 17th, 2015


“Hey Mom come here, I need help with the green eyeshadow,” Sophie called from the bathroom.

“Um, okay,” I said, taking in the situation, the big, blurry smears. “You want me to get it off your cheeks?”

“No! I want you to put it on my eyebrows and all over my eyes,” she said, pointing to the Claire’s multi-pack. “Use the darkest green.”

I picked up the applicator and covered it in green eyeshadow, carefully painting her eyebrows and then her lids.

“How does that look?” I asked, pointing her toward the mirror.

“Good!” she said, exhaling loudly. “Now I won’t get pinched.”

It’s a challenge, figuring out how to dress for St. Patrick’s Day when your school dress code is limited to blue, white, yellow and purple. The eyeshadow accompanied rainbow striped socks, green beads and several green shamrock stickers. I’m sure none of it’s acceptable. And rule breaking aside, I’m not sure if I’m the best or the worst mom for letting my kid out of the house looking like such a wreck — sure to be the source of whispers and pointing, if not pinches, today.

But today, I didn’t care. Maybe it’s because we just returned from New Orleans, where you’re practically required to dress like a freak. Maybe it’s because I remember getting pinched on St. Patrick’s Day. Maybe I’m just tired, and sick of that stupid dress code.

Or maybe it’s because more and more, Sophie is my guide – I’m realizing that her choices aren’t always such bad ones.

Really, who cares if she goes to school with green eye shadow smeared on her cheeks like war paint? It’s all too appropriate, if you ask me. Sophie’s fighting all kinds of battles all day long, battles I don’t see, battles I probably don’t want to know about. Some days she doesn’t want to go to school at all. Today she was kind of excited to show off her outfit.

In the crush to get out the door this morning, I almost forgot to fill out a field trip permission slip that had been floating around in Sophie’s backpack for a while. I smoothed it out and grabbed a pen — signing, adding phone numbers, checking no to “Food, Plant, Insect Sting Allergies,” scribbling “Down syndrome” when the health form asked for “Chronic Health Problems,”and pausing only when it asked for “Recommended Treatment.”

“Green eyeshadow,” I thought. Instead I left that part blank, shoved the slip back into her backpack, and hustled Sophie out the door to school.


Party Hat

End the R Word — And the Attitude

posted Wednesday March 4th, 2015


I don’t hear it so much anymore, so I was surprised.

“I’m so retarded!” a brand-new employee said the other day, struggling to open a door with a new key card. We were coming back from lunch, and as we walked to the security office to get the key card, I’d winced a little, thinking about how colorful my own language had been over tacos and iced tea. This girl had barely said crap. (Literally — that’s the only off-color thing I’d heard.)

But she had no problem ripping loose with the R word. Usually that’s when I whip out my phone to show off pictures of Sophie. It was the girl’s first day; I let it go, sighing as I returned to my desk.

People aren’t using the R word so much anymore — not around me, anyway. And that’s good. But it’s not enough. Not using that word is only a start. The other night, a dear old friend made a reference to “special needs” — and not in a good way. I didn’t say anything. I didn’t have to — I heard her voice catch on the other end of the phone and winced myself, upset that she was uncomfortable.

We all do it, all the time. I do it, despite attempts to be aware. As a journalist I’m not super down with the word police. But I worry about what our words say about our thoughts and intentions, corny as that sounds.

Not so long ago, a guy I know was doing PR for the local Special Olympics chapter — until he tweeted a joke about special ed. The response was swift and firm — Jason Rose no longer has the bragging rights of working on behalf of the kids with special needs that he dissed.

In a perfect world, we’d all be so swift to respond. And we’d all have as much clout.

Before I had Sophie, the R word was one-dimensional, a meaningless put down. Down syndrome, special needs, special ed — all terms on paper. Sophie brings it all to life for me, and I figure  my — our — small contribution is bringing it all to life for others, too. Hence the Facebook status updates, the Instagram photos, the blog posts, the radio commentaries, and the occasional newspaper story, when I can convince my boss.

In-person introductions work pretty well, too. I think I’ll bring Sophie to the office next week during Spring Break.

Party Hat

Hall Full

posted Friday February 20th, 2015



In the end, I didn’t bake a pie. And the IEP still went well.

As well as could be expected, I suppose. Maybe better. Okay, definitely better.

Funny how I spent so much time looking for a fancy charter or specialty school for Sophie. There are things she doesn’t like about this traditional junior high, to be sure (top of the list, dress code, and also the fact that almost all her friends chose other schools) but there’s a lot to love — the staff (except for one teacher I’m a little unsure about) obviously adore her, she was allowed to join the cheer team, the school started not one but two clubs at Sophie’s behest (Best Buddies and drama), and Sophie just finished reading “A Wrinkle in Time” along with her general ed English class. General ed. She’s got an amazing aide. And while she still doesn’t have many friends her own age, I’m promised she’s getting there. She does have a friend in the school resource officer (read: school cop) and the two of them have a fist-bump-blow-it-up ritual whenever they see each other.

Still, I was anxious about the IEP, the “individualized education program,” a legal document required by the feds, full of goals and orders. At Sophie’s elementary school, we’d always had a pre-IEP meeting to make sure there were no issues, then another meeting to finalize goals. So when I got a call from the junior high to schedule the IEP (no mention of a pre-meeting) I got nervous. More so when the proposed time was 7:15 am. (School starts at 7:45, meaning the meeting would go no longer than a half hour.)

Sophie’s lawyer put the kibosh on that. In the end, the meeting went a little over two hours. I left feeling guilty for keeping teachers so long after school, but I also left feeling like we’d really accomplished something.

t don’t have a lot of advice to dispense in this area, but let me tell you this: If you are not a parent who doesn’t happen to have a background in special education (and even if you do) you might want to consider hiring an advocate to come to IEP meetings. Doesn’t have to be a lawyer, although Sophie’s advocate happens to be one. If you are in metro Phoenix, I’ll give you Sophie’s advocate’s name. She’s absolutely amazing.

I reviewed the draft IEP document and had nothing to say, other than that I wished I hadn’t looked at the page with the standardized test scores (first percentile is hard to put out of your head, mine anyway). Sophie’s advocate looked and sent me a long email, full of tweaks, comments and recommendations that she shared with the dozen team members who joined us in a circle in the resource teacher’s classroom yesterday.

It was nothing huge — Sophie will keep her personal aide, she’ll still get speech and occupational therapies, and she’ll get to stay in general ed language arts. But now she’ll get to do math with a calculator; she’ll take photos of her assignments on the iPad instead of struggling to write homework down; she’ll work toward writing a two paragraph research paper with citations. And she’ll get therapy designed to help her finally learn how to button and zip a pair of jeans.

“I’m not worried about middle school,” the lawyer told the group. “I’m thinking about high school. And college.”

I looked down, afraid to catch any eyes around the table. I don’t know what the others thought of that. Afterward, the lawyer told me she has no intention of Sophie being in a self-contained classroom in high school, adding that she can see her getting a two year degree at a community college. I could tell she meant it. That alone was worth her fee, times about a zillion. Having Sophie’s teachers hear it doesn’t hurt, either.

Last week, we snuck the girls out of school for an extra day and took them to Disneyland for the holiday weekend. It had been three years since Sophie’s last visit, and I was struck by how much she’s grown up. Seeing a kid every day in her usual setting, you don’t notice change. But I saw quite a bit at the park. As soon as we arrived, Ray and Annabelle rushed off to Space Mountain; Sophie wasn’t ready for that one (hey, me either) but she insisted on the teacups — a big step up from the carousel, her old stand by. To be sure, Sophie’s not your average tween — she wanted to see every character she could, telling each one, “I’m going to take a selfie because I’m too old for autographs, I’m almost a teenager.”

Yes, there were plenty of older kids (and adults) lined up for Mickey and Goofy, but we stood with a bunch of toddlers waiting to see Olaf, the snowman from the movie Frozen. We were next in line when a handler announced that Olaf had to take a break. I rolled my eyes. Sophie just grinned and kept waiting. Later, recounting the experience, she remembered that the handler had told her that Olaf had to go outside to pack some more snow on.

I looked down at my almost 12-year-old and blurted out, “Sophie, do you think Olaf is real?”

“No…..” she said slowly, looking confused. I backtracked immediately.

“Oh, of course he is!” I said. She smiled and nodded.

Some things haven’t changed. I’ll be honest: It’s a strange life. And a good one. Definitely a good one.

Most school mornings, Sophie struggles to get her backpack out of the car, put on her ID, and straighten her glasses before finally closing the door, offering a few final “I love you Mom!’s” as I pull away. In those few extra moments, I watch her classmates, big, almost-full-grown kids with facial hair and breasts, bounding by. Next to them, walking as fast as her tiny feet will let her, head down, hair mussed, boobs still not growing (don’t tell her I said that) Sophie looks like a second grader, maybe.

I hold my breath until I see her aide in the courtyard, waving.

Party Hat

Tomorrow is Sophie’s IEP.

I hate IEP day. (The IEP is basically a master plan for school for a kid with special needs.) I know a family that bakes a pie in honor of IEP day. I love that. Tonight I’m going to rustle around in the freezer and cupboards and find something to make — if only to take my mind off what’s coming.

I hate IEP day because no matter how much I prepare — and I prepare a lot, Sophie’s lawyer will be there and we both have draft copies of the IEP document, and so does Sophie’s aide, and I’ve talked to most of the teachers and even a therapist who doesn’t see her anymore — I always feel like I’m falling, like one of those dreams where you fall off the bed. Unsteady. Uncertain. Panicked.

What should I ask for? What can I ask for? What does Sophie need? Damned if I know, and I’m beginning to wonder if anyone really does and don’t get me wrong, she’s doing well in sixth grade. At least, that’s what the teachers all told me at parent/teacher conferences earlier this month. She asks the right questions, gets answers right on tests, understands some math — all things I had given up attempting by the time I hit sixth grade and you think I’m kidding but I’m not. Ask me to diagram a sentence.

Sophie’s grades are good. But her standardized test scores in math and English have actually gone down since last year. That might be because she forgot her glasses the day of the last test — or it could be that standardized tests are stupid or it could be something I don’t want to think about. Something I’m wondering if I should address in the IEP, a question that’s been on my mind for a while but one looming large as Sophie’s next birthday approaches:

Do Kids with Down syndrome Stop Developing Intellectually at Age 12?

A few months ago, a dear friend on the other side of the country called to ask if I’ve ever heard that kids with DS stop developing at 12. Her son is a year younger than Sophie. I had to admit that I had heard it, that in fact last year as I was touring junior high schools a special education director with 20-plus years in the field had informed me that “those kids” stop developing around 7th or 8th grade. I was horrified that someone would make that assertion — and I still am — but the question’s nagged at me ever since.

I buried it, and focused on other things — cheerleading, drama club, the right back pack. But with the IEP coming tomorrow, I dug it back up again and did some crowd sourcing. I asked a few Facebook friends with older kids with DS: Do you think our kids stop developing at age 12?

The answer was a resounding no. I’ll admit i cheated — I knew it would be, having watched their kids flourish on my FB feed.

“Pure hogwash,” one of my favorite mom friends wrote. “Any of us stop developing if we are not encouraged and given new opportunities to expand our thinking.”

She’s right. Totally right. I’ve seen it happen both ways with Sophie.

But still, the question nagged at me. So I emailed Jamie Edgin. She’s a leading researcher in Down syndrome and cognitive abilities, based not far from me in Tucson. Lately, her research has focused on how sleep affects cognition in people with Down syndrome. But her work goes beyond that, and she and colleagues even came up with their own test designed to measure cognitive abilities in people with DS, recognizing the challenges in testing the population.

I asked my question, with no real anticipation of the answer. Not long after I hit send, the following came back:

Dr. Edgin explained she just had a new sleep study funded by the Gates Foundation, and would have to make her answer brief.

“In terms of your question, unfortunately some areas of function are less able to develop (including learning processes driven by brain regions that will eventually be stricken by Alzheimer’s-disease related decline — like memory functions). Other functions do continue to develop past this age (ones that are not reliant on those particular regions, like everyday skills, word knowledge).

And, the variability is more salient between individuals than the similarities.”

Okay. I digested that slowly, then asked for more. Did she have any specific studies she knew of? Edgin replied that these conclusions come from her own work, and she has yet to publish findings.

She didn’t say they stopped developing, per se, but the news was hardly heartening.

That damn 21st chromosome. For a while now I’ve known that the genes that cause the plaque on the brain that causes early-onset Alzheimer’s (a very basic explanation) are found on the 21st chromosome. If you have an extra 21st, you’re all but guaranteed of getting early-onset Alzheimer’s. It should have occurred to me that there would be earlier implications. But it didn’t.

They say that knowledge is power, but I’m going to bury that one — for tomorrow, at least — and focus instead on what Sophie needs for a successful next 12 months. Keep my expectations high.

And tonight, I think I’ll bake a pie.

Party Hat

The Friend Ship

posted Tuesday January 27th, 2015


“Hey,” I said yesterday to the nanny, “I’ll give you a bonus if you find Sophie some friends at school.”

It was actually several hours before it dawned on me just how fucked up that was, how fucked up I am.

In my defense, I’m not alone in worrying about the friend thing. Last week a mom posted this on one of the many Down syndrome Facebook groups I follow:

…This is one subject that brings me to my knees. My daughter…is 11 years old and she is fully included in general education in middle school (6th grade). She truly has been loved by classmates, our community, our neighbors…everyone seems to know her! She cheered on the 6th grade cheer team during the fall, and I thought that would be a great way to make friendships. The disconnect is happening from school & home. She seems to have friends at school, but at home, the phone isn’t ringing (not that girls call anymore…they text), but she is not being included to “hang out” after school, on weekends. This breaks my heart. I have shared my thoughts and feelings with some moms in hopes their children would reach out, but still nothing. I know 6th grade is an awkward year for a lot of kids, and even typical kids get left out and left behind. It just seems to be the rule more than the exception for kids with disabilities.

The mom goes on to talk about starting a club that would help typical kids and kids with disabilities form friendships outside of school. I didn’t tell her that Sophie’s school did just that — a really amazing effort, I don’t want to sound ungrateful — but that Sophie’s “best buddy” seems light years older, and, frankly, not super interested in hanging out beyond club meetings.

It can be tough for any kid at this age, and frankly, as I thought about it, I realized how hard it is for so many of us — at any age. It was never easy for me as a kid. Even our super-gregarious but new-to-town nanny (so outgoing she promised to fill Sophie’s phone with numbers when I asked) rushed in last week to announce, “I made a friend at community college! We hung out twice last week!”

I mentioned the friend thing to Annabelle. “Yeah,” she said. “It took me four years at my new school to really make good friends. Sophie and I are so much alike.”

They are. I love that Annabelle recognizes that, that she sees past so many things the rest of us get hung up on. And maybe when Sophie’s in eighth grade, we’ll all look back at this as a particularly tough time. But I can’t but wonder if the friend ship has sailed.

Party Hat

Pointe Taken

posted Friday January 9th, 2015


This morning I found a pointe shoe on top of the dryer. I don’t know how it got there or whose it is  (not so unusual, you wouldn’t believe what I find in the bottom of my purse on a regular basis) but I do know it does not belong to Sophie.

Earlier this week, I got an email from the principal at Sophie’s school. A teacher has volunteered to run an after-school drama club. It’s not the drama elective that Sophie asked for initially — we were told in no uncertain terms that kids from Sophie’s school (even honors students) cannot take classes at the gifted academy next door (this has me itching to do some reporting, but that’s for another post) — but it’s drama at school and Sophie is pleased.

It’s an important reminder to us all that if you put your mind to something, you can make it happen.

But last night I was reminded that while she can do a lot — attend junior high with her typical peers, cheer at basketball games, convince her school to start a drama club — there are some things Sophie simply will not be able to do.

Like dance on pointe.

Annabelle has danced on pointe since she was 11, the magic age that many girls at our studio get the pink satin shoes. I’ve been waiting for months for Sophie to ask where her own pointe shoes are — she turned 11 in May — and it finally happened last night. Annabelle was complaining that her shoes are a little big, and we were discussing making an appointment for a fitting.

“Hey, it’s time for me to get pointe shoes!” Sophie announced. “I’m 11.”

“Oh shit,” I thought. There’s no good answer to the question. Physically, Sophie is not capable. Not now, anyway. To back up a bit, you need to know that lots of kids aren’t. Sophie’s ballet teacher (who happens to be my mother) requires her students to take at least three classes a week to prepare for pointe, which is very physically demanding. Even then, some girls are never ready.

Sophie has not taken the required classes, for various reasons — partly because I haven’t wanted to set her up for failure. Now, it’s true that if you google “Down syndrome” and “pointe shoes” you’ll find some videos of girls with DS who are dancing on pointe. I did that years ago. My mom did it last night, after I emailed to warn her Sophie finally asked for pointe shoes. She was less convinced than ever that’s a good idea.

On this one, Sophie might just have to take no for an answer. Annabelle takes 10 dance classes a week;  my mother is the only person on the planet more paranoid and safety conscious than I am, and even at that I worry about my older daughter being strong enough to go on pointe. Unless Sophie is willing to give up several things she loves — cheer, swimming, track, and yes, drama — to devote herself completely to ballet and attend many classes, she may still never be ready. At the moment, she’s still in a beginning ballet class.

I woke up this morning ready with a bunch of answers, in case the topic came up. I was going to tell her that Annabelle doesn’t get to be on cheer, that not every girl in ballet goes on pointe, that it hurts a lot. That sometimes life isn’t fair. But Sophie didn’t mention it. I’m going to sweep that errant pointe shoe into a laundry basket and move on — and hope Sophie does, too.

Party Hat

Tatum’s Dad

posted Wednesday January 7th, 2015


It was standing room only yesterday at Green Acres. So many people loved Steve Wiley, and they knew him as many things — record store guy, baseball coach, unconventional philospher.

I knew him as Tatum’s dad.

I’m sure Steve had an opinion of what it’s like to have a kid with Down syndrome, though as far as I recall we never had that talk. His wife Beth and I sure have, during hours together at dance class, cheer practice and one memorable puberty seminar. What I’ll remember about Steve is the privilege of watching him as a parent.

If you’re friends with Steve on Facebook, go back through his timeline and watch the videos he made and posted of Tatum’s Special Olympics events. My favorite is from her first swim meet in 2011; I believe she was 9. I can’t figure out how to link to the video but here’s what Steve wrote when he posted it.

Tatum joins her brothers as the third competitive athlete in the house with her first Special Olympics swim meet.

We weren’t sure how she’d hold up to the pressure and the noise, but as you can see, she was a champ.

Our boys have provided some great sporting moments in our life… but as much as I loved Ben’s first homer, or Jonah’s first pick-six, nothing can compare to the absolute joy we felt yesterday watching Tatum get ALL the attention.

A year ago, she was still barely swimming, now she is a competitor. Obviously, you can tell by my cheering on the video, we’re pretty proud.

She’s pretty proud too. She’s already watched this video about twelve times.

Sophie watched that video at least a dozen times, as well. Me, too. And I watched it again today, though it was hard this time.

Sophie and Tatum have been classmates since kindergarten. This fall, they went off to junior high together. Sophie still refuses to join the swim team, but the two girls have been together for years not only in school but on Special Olympics track and cheer teams.

As they say, it takes a village, and Steve was a huge part of ours.

Just this past October, it was Steve who made a call to school administrators to lobby to get both girls onto the junior high cheer squad. They’d each been promised spots in the spring, but come fall there was a miscommunication and now both families were stuck in an awkward situation. Steve, who knew the vice principal in charge of sports from his years of working with his older sons’ baseball teams, stepped in — in a way none of the rest of us could have.

 “Steve told them it can be tricky sometimes asking for special treatment and wanting inclusion all at the same time but some situations make sense and this is one of those situations,” Beth emailed me later. “They said the girls would be good to go.”

A few weeks later, Steve and I stood outside a school gym, waiting to see the girls cheer, and I admitted it was my very first school basketball game. He was incredulous. I haughtily asked him how many speech and debate tournaments he’d been to and he laughed in my face. I laughed, too, and had to admit that no, it wasn’t the same thing.

Our team lost miserably. I’m not sure any of us noticed — even Steve. We four parents were fixated on our two girls as they took their places in the middle of the line-up and shook their pom poms, about as fully included as I’ve ever seen them. It was so worth that call, and I’ll always be grateful to Steve.

“I’ve never seen so many tee shirts at a funeral,” I whispered to Ray yesterday, as we crammed into the back of the service. Up front, there was one little girl in a beautiful magenta party dress and pretty black shoes. Afterward, in the front yard of her house, she crossed the monkey bars again and again, while groups of big boys shot hoops in the driveway.

I’m not sure Tatum knows what yesterday meant. To be honest, I’m not sure any of us do.

Years ago, when he still had a brick and mortar store, Steve  hosted a fundraiser called Hoodstock, a music festival featuring live bands and upcycled albums painted by the kids at Tatum and Sophie’s school. Every year, we’d all race over to buy our kids’ albums; it was so neat to see them up on the walls of a real record store. Steve Wiley made parenthood cool.

Sophie’s records are hanging on her bedroom wall. I’ll never look at them the same.

Party Hat

Table for One

posted Tuesday January 6th, 2015


Sophie headed off to school yesterday with a new lunch bag, a Hanukkah gift. By the time I got home — it was only 6:30 — she was passed out on the couch. It was a big day, the first day back after the holiday, she had cheer practice, and she’s just getting over the flu, so I wasn’t surprised to find her asleep.

After I made dinner for the rest of us, I sat on the couch next to Sophie, stealing some of her blanket and handing her a Carnation Instant Breakfast shake, her favorite. She leaned in for a cuddle.

“Hey, how was school?” I asked.


Unsatisfied, I went to my standby, the question that always elicits SOMETHING from either of my kids.

“Who’d you eat lunch with?”

“No one,” she mumbled around the straw.


“I don’t want to talk about it.”

And so we didn’t (okay, I might have pried a bit more, to no avail).

There you had it, my biggest fear for Sophie in junior high — my biggest fear for any kid, including my past self. No one to sit with at lunch.

This morning I packed the new lunch bag again, and dropped Sophie at school. She dragged her super-heavy rolling backpack out of the car herself, a new thing we’re trying to encourage independence.

I’ll be thinking of her at lunch time.

Party Hat

Dramatic Pause

posted Tuesday December 16th, 2014

The principal called this afternoon.

Not the principal of Sophie’s school, the principal of the gifted academy next door — the one that offers the drama elective she wants to take.

He was polite but I got his message loud and clear: Tell your kid to leave me alone!

Last week I posed a question on Sophie’s behalf. Could she take the drama elective at the gifted school? The answer was sure and swift: No.

The question was not, as it turns out, unexpected. Apparently Sophie’s been cornering the principal for weeks on this very topic; the schools share a cafeteria and she finds him at lunch. She figured out that the gifted kids get to take drama and she doesn’t. They don’t offer a drama elective at the regular school. Sophie doesn’t know what gifted means, but she knows what drama means and despite the fact that she attends camps and classes and performances outside of school, she wants in on this opportunity.

When they told me (assuring me that even the honors kids at Sophie’s school don’t get to take any classes at the gifted academy) I told them they could break the news to Sophie. That seemed fair.

Apparently she’s not taking no for an answer.

The principal was very kind, even complimentary. “Today she offered her most cogent argument to date,” he said. He told me that Sophie had pointed out that the gifted kids get to come to the regular school to take electives, but not vice versa.

Not bad.

He’s not budging. Instead, he suggested that maybe the Best Buddies program at Sophie’s school could tape some infomercials to educate students, written by and starring Sophie. He mentioned that there’s an effort underway to start a drama club; maybe I’d like to be the parent sponsor?

I said I’d love to help out but I worry Sophie’s not going to go for a drama club run by her mother, as opposed to a bona fide drama class.

I’m a little embarrassed by the whole thing, but I’m also really proud of Sophie. “She has no editor,” I told the principal. “She doesn’t understand why she can’t take that class.”

And frankly, at this point, neither do I. Oh trust me, I get all the legal ramblings, you don’t need to explain that to me, but while we’re talking about legality, I doubt the segregation that goes on here — and that goes on in this district — is strictly kosher.

The funny part is that none of this has anything to do with the fact that Sophie has Down syndrome. She’s just a regular kid asking for something her regular school doesn’t offer. And if she wants to push, who am I to stop her? I was a bona fide pain in the ass all through school (I still am, come to think of it). She comes by it honestly.

I’m going to tell her to quit bugging that principal. But I just might suggest that Sophie write a letter to the school board.


Amy Silverman
Amy Silverman has two beautiful daughters, Annabelle and Sophie. Sophie has Down syndrome. These days, Amy divides the world into two groups: the people who adore Sophie, and those who don’t look twice. Amy has to remind herself that once upon a time -- when it came to people who are "different" -- she fell in the latter category. And therein lies the blog... Read more


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