Party Hat

Best Buddies for Sophie: Down syndrome and Junior High

posted Tuesday August 26th, 2014

photo-406

Sophie is the most popular kid I know.

Just a few weeks into the new school year, I’m having trouble keeping up with my 11-year-old’s social schedule. Last Sunday she was invited to a friend’s house for dinner, and another friend asked her out for ice cream. Another pal asked if she can have a regular badminton date on Fridays, and she’s been meeting with another to write a play. She regularly texts and calls another dozen or so friends; she’s got sleepover plans in the works with several of them. Tonight she has a date with our next door neighbor to compare paint brush collections. She regularly begs me to schedule a time to watch Project Runway with another friend, and a mani-pedi with yet another.

Sophie treasures each of these friendships, and I treasure them as well. We should all be lucky enough to have friends like these. There’s just one problem. They’re all adults: two former nannies, her physical therapist, a family friend, a 60-something neighbor, her kindergarten teacher and the principal from her elementary school (yes, he promised her mani-pedis to celebrate their shared birthday).

Last week I asked Sophie if she’d made any friends in middle school. “Yes!” she told me. “Mrs. W.”

Her aide.

I get that it’s hard to make friends in junior high, whether you have Down syndrome or not. It took Annabelle years to feel comfortable at a new school, to find a group of friends. But I worry if it will ever happen for Sophie. Her gregarious and sometimes aggressive approach to friendship just isn’t going to fly with most of the tween and teen set. She’s different — and kids that age don’t want anyone to notice them, they are busy worrying about their own differences, stuck understandably in their own heads. And if they are intrigued by the idea of a friendship with someone like Sophie, they might be unsure of how to approach it. I know I would have been. (Still am!)

And so my stomach did a backflip when I got an email yesterday informing me that Sophie’s school is getting ready to launch an official Best Buddies program, started years ago by the Shriver family (of Special Olympics fame) to foster friendships between typical kids and kids with disabilities. Historically Best Buddies has been more common in high schools, but they are expanding to junior high. I’m thrilled.

Not everyone’s as into it. I was out for lunch a few weeks ago with a friend who has a 7-year-old with Down syndrome, and the topic came up. She’s not a fan; she doesn’t like forced friendships. I do tend to agree. But when Sophie was 7, she had no need for Best Buddies. She had — and still has — a bona fide best friend, the kind most of us only dream about. She and Sarah met in kindergarten and were attached at the hip (not literally, Sarah’s always had at least a foot on Sophie) through fifth grade — till they parted for different schools.

Here’s a radio piece I did years ago about their friendship.

I wonder if Sarah and Sophie would have become friends if they’d met today. Even at 5, Sarah was a very special person with a big heart, but she was also a little kid unencumbered by puberty and the insecurities that come along with it. Their kindergarten teacher knew to nudge the friendship along, but these days there’s little time for social interaction in school — no recess, a super short lunch hour. Some forced — or rather, encouraged — interaction might be in order.

I know what you’re thinking. You’re thinking that I worry too much. As usual, Sophie has already proved me wrong. Yesterday afternoon she came home with a phone number for a new friend, one  her own age — a girl in her science class. So maybe we won’t need Best Buddies. But something tells me we will.

In any case, the biggest challenge will be working more play dates onto Sophie’s already-full dance card.


Scroll
Party Hat

photo-405

This morning my husband, daughters and I each took the ALS Ice Bucket Challenge. I can think of worse ways to spend 15 minutes on a Saturday.

There’s been a lot of curmudgeonly talk about this latest social media phenom, and I’ll admit to feeling a little icy toward it myself in recent days, as my Facebook feed clogged with sappy, happy, insipid videos. But when my freshman college roommate challenged me yesterday afternoon, I knew I’d do it. And now that I have, I’m really glad.

Yes, there are probably much better ways to educate the public at large about serious diseases and disorders, better ways to raise money, better ways to treat serious stuff the way it should be treated. I’m not into pink candy for breast cancer or even Buddy Walks to celebrate Down syndrome. I think the best way of educating people about my daughter Sophie, who happens to have Down syndrome, is to simply live our lives (sometimes out loud on social media) and hope she can teach a few people firsthand about her extra 21st chromosome.

I imagine it’s not really the same for people with ALS.

If the ice bucket thing isn’t the best way to raise awareness about and money for ALS, it can’t be the worst. Yes, our videos this morning were as trite as any I’ve seen, but what you didn’t see was the family discussion we had about ALS before and after, or the check we’ll write. There was a real teaching moment when Sophie realized this was about something other than Down syndrome — that other people have different kinds of challenges in life.

And it was a good reminder that sometimes, we just need to get over ourselves.


Scroll
Party Hat

Uniform Behavior: Down syndrome and Junior High

posted Tuesday August 12th, 2014

photo-404

Another big change in junior high: a strict dress code.

The first couple days of school, Sophie was excited to wear her navy polo dress or a shirt and a khaki skort. By day three, she was rebelling — wanting to wear forbidden leggings, refusing to tuck in her shirt — and by the first day of the second week she had completely lost her shit.

I get it. It was picture day and Sophie wanted to dress up.

“No, sweetie,” I told her for the second or maybe it was the hundredth time, trying to be patient but ready to lose it myself. “You have to wear your uniform. How about this dress? And be sure to put black shorts on under it and please wear these shoes.”

The promise of a borrowed necklace and a little make up got her in and out of the shower, but by then we were officially late, so when Sophie emerged from her room with a gray and white tie-dyed, sequined vest over her polo dress, I gave up.

“Fine,” I said, not very nicely. “They’ll make you take it off at school.”

I had to admit she looked pretty cute. She practically cooed when I pulled out the mascara and jumped at the chance to borrow my new lip gloss, smearing it all over her mouth. She came home with the vest, necklace and lip gloss crammed in the bottom of her backpack.

By this morning, she just seemed resigned. I put her outfit on the couch without a word, and she put it on.

Uniforms are the least of Sophie’s worries — or they should be. But for both of us, I think, the school dress code sends a bigger message: conform or go home.

Here’s a piece I wrote about uniforms that ran on KJZZ — the Phoenix NPR affiliate — the week before school started. 


Scroll
Party Hat

Down syndrome and Junior High: Here We Go

posted Sunday August 10th, 2014

photo-403

All summer long, Sophie was obsessed with plays — buying them, reading them, casting them.

Because our local bookstore doesn’t stock any kid-oriented scripts, Sophie’s collection is a little odd for a tween: Our Town, the collected works of Neil Simon, and The Miracle Worker. Odder still for a kid with Down syndrome. I’m not honestly sure how much of this stuff she can actually read and comprehend. Enough, I figure.

Enough to ask some good questions.

“Where are all of Helen’s lines?” she wanted to know one day last week.

When I explained that Helen Keller doesn’t have any lines, and reminded Sophie of the details of the play — which we saw this summer — she shook her head and informed me she’d be writing some herself because she intended to play Helen, and it wouldn’t do for Helen to not have any lines.

“And Mrs. W. will be Annie Sullivan,” she told me.

“Perfect,” I said, smiling to myself.

Mrs. W. (we typically call her by her entire name, but I won’t here) has been Sophie’s instructional aide at school for the last three years, grades 3-5, and last week she joined her for sixth grade. She is the reason Sophie is being mainstreamed at our neighborhood junior high, in regular classes with typical kids.

That is a pretty strong statement, but it’s true. There is no way I could have sent Sophie off to school this way — absolutely no freaking way — without this woman by her side.

And not by her side, because that’s the beauty of Mrs. W. A lot of people will tell you that a one-on-one aide is a bad idea, that federal law prescribes that a kid with a disability be placed in the “least restrictive setting” and that an aide automatically precludes that from happening. They are wrong. What they mean to say is that an aide is automatically expensive. Very expensive. Guilt-inducingly expensive, if you are me.

And, if you are Sophie with Mrs. W., worth every penny of the government’s money.

We held back on asking for an aide for Sophie until third grade, at which point I hired a lawyer, deciding we had to make this happen quickly and decisively. To my surprise, the plan worked. Boom. Sophie had an aide. And to be honest, I knew I was playing with fire. The whole thing could have been a disaster with the wrong person. But along came Mrs. W. — they should use her as a role model in training aides (which doesn’t really happen, from what I can tell). Mrs. W. is experienced in education, calm but firm and knows when to push in and more important, when to pull back.

She also knows Sophie. As elementary school drew to a close, I spent several panicked months trying to figure out where Sophie should go to junior high. The neighborhood school was emerging as the only real viable option, but I was terrified of what I’d heard: more than 1,000 kids and not much history mainstreaming the way we wanted to mainstream Sophie.

And then one day I ran into Mrs. W. in the hall at the elementary school.

“You know,” she said quietly, “I’d be willing to go to junior high with Sophie.”

I got in the car and called my mom.

“Do you think I can I stop looking for a school now?” I asked, feeling the weight of Sophie’s future — her immediate one, anyway — lift from my shoulders. For the first time in weeks, I could breath.

Mrs. W. has been at every planning meeting. She asked for a copy of Sophie’s schedule so she could contact each of her teachers before the year even started. We attended “meet the teacher” together and coordinated morning drop-off and afternoon pick-up.

This school is very good. Better than I expected. Sophie has choir and visual art every day (her sister was jealous of the latter, which she doesn’t get at her fancy charter school) and from the principal down, as we entered the school year the staff was kind and responsive. The gifted kids are segregated in their own private building, but all kids at the school are considered on the path to college and the stress of that challenge shows on the faces of the adults charged with making it happen. Sophie’s school ID says “2025 college graduate” on it.

By the end of the first week of school, I was feeling cocky. Things are going so well, I marveled Friday afternoon as I walked up to the office for the first team meeting of the year — a gathering of administrators, therapists and teachers. Walking in, I realized that the only person I really knew in the room was Mrs. W. I took a seat next to her and took paper from my calendar to take notes, trying not to let anyone see how nervous I was.

Introductions were made around the table, and the first to speak was a teacher wearing a purple tee shirt with the slogan, “I’ve got college on the brain” printed on the front.

So you have Sophie here for the social aspects, not academic, right? she asked.

Here we go, I thought.

Well, I said, stammering a little, yes, sure, socialization is important. But I don’t want to give up on academics off the bat. Wouldn’t there be modifications made to the curriculum?

This woman just wasn’t sure about that. Understandably, it was the end of the first week; she didn’t know Sophie well, she explained. But then she went on, clearly having already made up her mind about my kid.  She explained that her class is very fast-paced, that by the end of the first semester, the students will have learned 6,000 new vocabulary words. That they were expected to take a lot of notes. The text book is tough to read, she said, adding that she’d reviewed Sophie’s scores and noticed her reading level was in the second to third grade range. She just didn’t see how this would work. Furthermore, she said, Sophie had actually gotten up out of her seat once during the week and headed for the door.

I felt my face get hot. I knew Sophie had slipped below grade level a little in her reading, but I didn’t know how much. No one had ever told me that. I didn’t know what to say. “Don’t judge my kid by her test scores” seemed a little defensive. We were one person in and I’d lost my way in this meeting, begun to doubt this entire decision. I looked at Mrs. W.

She jumped in without missing a beat, explaining gently how Sophie’s curriculum had been adjusted during elementary school so that, for example, she might not learn every vocabulary word, but the most important ones. Heads nodded around the table.

Oh, and the door incident? Mrs. W. explained that. Someone had knocked, and Sophie had gotten up to answer the door. She’d returned to her seat as soon as she was asked to.

We all agreed that it was too soon to make any final decisions about modifications, that this was just a meeting to get acquainted and open lines of communication.

The rest of the meeting went pretty well, and I tried to focus on what the other teachers were saying as that first teacher’s words played on a loop in my head. I finally felt better when we got to the language arts teacher, new to the school this year.

Now, I AM NOT A RELIGIOUS PERSON. If you have read this blog at all, you know that. But this was one of those moments that makes you feel like the universe is looking out. The language arts teacher, who had slipped into the meeting late and is new to the school this year, explained that before becoming an elementary school teacher, she had two primary interests: teaching ballet and researching Down syndrome.

At my behest, she gave a quick but lovely explanation to the group of what it means to have Down syndrome — of how it affects every bit of your physical self, of what the cognitive challenges are, and of how much people with DS can accomplish. She told everyone how thrilled she is to have Sophie in class, that she had already purchased a wide-rule notebook to accommodate her handwriting challenges and that while she gives pop quizzes, Sophie would always have time to prepare. She feels confident, she told the group, that Sophie will succeed.

The school psychologist suggested that perhaps the language arts teacher could give a presentation about Down syndrome to the entire staff at the school. I think that’s a great idea.

After the meeting, I looked around for the language arts teacher. I wanted to talk to her more about Down syndrome, and ask her about her ballet training. But she’d disappeared, almost like an aparition. Instead, the teacher in the purple shirt scooted her chair closer. She wanted to tell me all about her own background training in special education and how, in fact, she trains special education teachers at a nearby university. (It’s amazing to me how often I encounter teachers and administrators who want to tell me about their special ed background — and how not all but many of them have not only left special ed but seem to have no idea what it should entail. In fact, “My training is in special education” has become my biggest red flag.)

I kept my mouth shut and tried to smile. It’s going to be a long year. Friday was an important reminder that it’s not going to be easy.

Thank goodness Mrs. W. has been cast in the supporting role.

 


Scroll
Party Hat

I met a woman yesterday. She and I have a lot in common.

We both live in metro Phoenix, both write, both have blonde hair. We both have 13 year old daughters and like the same coffee shop.

One big difference: This woman is pregnant with a baby that has Down syndrome.

I was never pregnant with a baby that has Down syndrome. Well, yes, technically I was. But I didn’t know it. If I had known, I’m afraid that I know what I would have done.

When I was pregnant at 36 — the same age this woman is now, by the way — things were different.  A decade ago, typically, no one tested you at three months; more like five or six.

“What are you going to do, have a late term abortion?” my husband asked after an initial test showed a slight chance the baby had DS. That scared me straight; I knew the answer to that question, if not to many others. I turned down the amnio, which would have provided the definitive answer. A few days later, an ultrasound tech told me my baby most definitely did not have Down syndrome. I took her word for it and never looked back — til I woke up in the recovery room after a C-section and questions arose.

I was never pregnant with a child with Down syndrome. This woman I met, she knew so early, by 12 weeks, that her baby has it. A blood test all but confirmed it; another test made it certain. She could have done it. It would have been simple. She’s not religious. But something else tugged at her.

She and her husband decided to keep the baby.

I am in awe of this woman.

We met for coffee yesterday, and driving over to meet her, it occurred to me that I’ve never met another woman pregnant with a baby that has Down syndrome. It’s estimated that 95% of people who know about it terminate, she said.

“It’s the Cadillac of birth defects,” I told this woman yesterday. “Have you heard that?”

She smiled. She’s nervous. Brave and awesome, but nervous — and understandably. She’s known people with Down syndrome, she told me, but she doesn’t know what it will be like to be the parent of one.

“It’s the best thing that ever happened to me,” I told her, meaning every word, even as junior high looms and I worry about early-onset Alzheimer’s and everything in between. I also admitted that it took me a really long time — years and years — to come around to feeling that way.

We agreed that it’s gross and insulting when do-gooders refer to babies with Down syndrome as angels. But driving away, I couldn’t help but feel like this woman is a little bit of an angel herself. By contrast, I am an accidental parent, a poser, a fraud.

But that woman, she’s the real deal. Lucky baby.


Scroll
Party Hat

Where Are All the People with Down syndrome?

posted Tuesday July 22nd, 2014

photo-402

I will be the first to admit that I’m not good at math. And this is a math question. Partly, anyway. I think it begins with math — but I’m not sure it ends there.

Where are all the people with Down syndrome?

I managed to schedule my summer travel so I arrived home in time for the hottest week of the year in Phoenix. That’s okay, I’m actually a little sick of other places, eager to sleep in my bed, eat from my fridge, hug my poodle and catch up on bad TV. It’s been a good summer. I’ve hunted for sand dollars in La Jolla, caught up with old friends in LA, and tracked down what might be the only thrift store in Maui. I saw the Kara Walker sugar installation in Brooklyn, scarfed a knish on the Lower East Side and determined that Harlem is not yet gentrified (at least, not the part I saw).

Here’s one thing I didn’t see during my summer travels: a single person with Down syndrome. I was in crowded airports, restaurants, stores, museums and resort pools, on crowded beaches and streets. Not one. And it’s not because I wasn’t looking. I was. Early on, Ray and I determined that no one stares as hard as a parent of a kid with Down syndrome. Does that guy have it? That woman? That baby?

No. Not this summer. And here’s where the math comes in. If 1 in every 700 live births results in Down syndrome — the most common genetic disorder — then why don’t I see more people with it?

Where are all the people with Down syndrome?

I know the answer. They are at Disneyland. That is where I see people with Down syndrome on a regular basis — Disneyland and, sometimes, at the mall on a weekday morning when the group homes take their field trips. Nowhere else. Not as a rule.

And Facebook. I see them on Facebook. In fact, my feed is so loaded with friends and groups associated with Down syndrome that it’s easy to forget that many days, out in the world, Sophie is alone. The only one. Days go by when we don’t even refer to Down syndrome. (Well, maybe a day at a time.) Sometimes out in public, people stare. Often not. She’s tiny enough, I think, that many people think she’s just young. To be honest, I don’t know what they think. I watched her in the pool in Hawaii last week, a little girl in swim goggles and a polka dotted bikini, turning somersaults in the water til she has to stop to catch her breath. By the end of the trip, strangers (to me, anyway) we passed in the resort lobby were greeting her by name.

Sophie is only 11. Will there come a day when we’re done taking her along? Will there come a day when she can travel alone? Whenever I pose a question — about driving, living independently, getting married — well-meaning friends admonish me for being negative. But scanning crowds, looking for people with Down syndrome out there living their lives, I don’t get a lot of positive feedback.

Thousands? Tens of thousands? More? I think about the number of faces I passed over the last several weeks — at the 9/11 fountains, at Strawberry Fields, outside Grand Central Station. On the Venice Beach boardwalk, at the Denver airport. Not one.

When the girls were really little, Ray and I took them to the petrified forest and, unsolicited, a ranger glanced in the back seat then gave us a brochure, told us that we could get Sophie in free if we wanted. Any national park, her whole life.

“They do that so people take them with them, you know,” she said. She didn’t mean anything by it (and I think the park service might have discontinued the program) but I still think about it, all these years later.

Where are all the people with Down syndrome? I know there’s an answer to the math question. Beyond that, I’m not sure I want to know.

Saturday night, Ray, Annabelle, Sophie and I packed pillows and blankets, charged electronics and bought snacks for a red eye flight home. We sat in the crowded terminal, stood in a long line, finally took our seats near the back of the plane. As I got ready to sit down, I noticed a young man sitting just behind Sophie. I know his name was Miles, because it was embroidered on his backpack. He had wire-rimmed glasses and ear buds and looked more like Sophie than she looks like any of her family.

“Hey Ray,” I said, cocking my head slightly and smiling. He looked, then smiled back.

I took my place in the middle seat, a daughter on either side, and pulled the blanket over all of us, feeling inexplicably happy.

“A boy with Down syndrome sitting right behind Sophie!” I marveled, as the ativan kicked in and I drifted off. “What are the chances?”


Scroll
Party Hat

This is What 13 Looks Like

posted Thursday July 10th, 2014

photo-401

Annabelle turned 13 today.

For the last several weeks I teased my first born, asking if she was planning to turn on me the day she became a teenager.

“Eh, maybe,” she replied last week, tossing off one of those looks I used to give my own mother several times a day, long before Resting Bitch Face became an excuse for a bad attitude. I was terrible to my mom for the duration of my adolescence, although it should be noted that for the past several decades, she’s been my best friend, role model and (almost) daily confidante.

I write more about Sophie than Annabelle on this blog — I cut back on AB a while ago, wanting to protect her privacy, but allow me to indulge today, on the anniversary not only of her birth but of a day a surgeon sliced me across the middle, revealing most of my organs to my husband (who didn’t look away quickly enough and is likely scarred for life, and we’re not just talking about a C-section scar) and pulling out a giant, colicky baby. And that was after the epidural didn’t work and that was after more than a day of labor.

Not that I’m counting.

I made a lousy pregnant person, refused to even consider natural childbirth and never did get the hang of breastfeeding. I’d never changed a diaper before Annabelle was born. I didn’t know what to do with her. Or with myself. I chucked my copy of “The Baby Whisperer” against the wall when she was three days old, already a failure, I decided.

But we found our way, Annabelle, Ray and I, and while I’m not at all religious I do wonder if the universe was preparing us for Sophie — a daughter who, in many ways, will never grow up — by making her sister such an old soul.

Annabelle is quiet and kind. She had a recent growth spurt — we almost see eye to eye now — but she’s still among the smallest in her class. This bothers her less than it used to. She is a ballet dancer. She loves to draw. She wants to learn how to surf. She can play Silent Night on the ukelele. She has a giant collection of nail polish, though she rarely wears makeup. She’s the most adventurous eater in the family; the other night she ordered a crazy-huge bowl of Vietnamese soup with who-knows what in it, and slurped it down. Her birthday dinner request: Ethiopian food.

She adores her sister, who loves her back — and also gives her a hard time. Mostly, she doesn’t mind.

Annabelle’s birthday list included items like thread bracelets and a nail care kit, which didn’t seem adequate to mark something as auspicious as entrance to the teen years. She did not ask for an iPhone. In fact, Ray and I were at such a loss for gift ideas that I piled the kitchen table high with hair accessories and baking books this morning, and we each gave her a trip — Ray’s to the Grand Canyon, mine to San Francisco.

She was delighted. At least, she acted that way — and as of 8 am, she hadn’t turned on me. Not yet.

Apparently, I wasn’t the only one a little worried about Annabelle becoming a teen. Last night, driving home from Sophie’s swimming lesson, she turned to me and asked, in a small voice, “Mom, even though I’m going to be a teenager tomorrow, will you still treat me like a little kid when I need you to?”

“Yes,” I said, turning my head to hide the tears. “Of course I will.”

Always.


Scroll
Party Hat

Annabelle Gurwitch, Meet Your Namesake

posted Friday June 27th, 2014

photo-399

The line dwindled, the authors stopped signing books and were chatting with each other, looking bored. It was time.

“Okay, Annabelle,” I said, nudging her. “Let’s go introduce ourselves.”

As a rule, I don’t line up to meet authors. Not authors I like, anyway, not since a bad encounter many years ago with T.C. Boyle. I don’t want to risk ruining my love of a good author with an encounter with a bad personality. Plus, I tend to gush. Not one of my best attributes.

But this was different. This was Annabelle Gurwitch.

Hers may not be a name that rolls off your tongue, and if you do recognize it, it’s likely for her work as an actor rather than as an author, and if you’re like me, it’s because she was on this show called “Dinner and a Movie” that aired in the late 90s (that’s when she was on it, anyway) in which she and an equally adorable male actor teamed up each week to show a movie (usually an 80s classic) and make dinner to go with it. Usually one of the actors from the movie would show up — think Jon Cryer and “Pretty in Pink.” The show was on Friday nights, and in the late 90s there was nothing to do in Phoenix, so I watched it a lot.

Like I said, Annabelle Gurwitch was adorable. When she left the show, I stopped watching it and found something else to do on Friday nights. A few years later I was pregnant with my first child, searching for just the right girl name. In Judaism (even my casual brand) you don’t name people after anyone you know who’s still alive, and we didn’t have any dead relatives with names I liked enough. I wanted to name the baby Rosy, but that was the dog’s name. And the second choice, Isabelle, was taken by the cat.

I stressed a lot about this. I wrote a piece about it for Salon. I wanted something sweet and classic, a little homespun, but a name that would stand the test of time. Nothing super popular, either. Annabelle came to mind, but it seemed way too cute — okay for a baby or a toddler, maybe even a young girl, but an adult? Seemed like an awful lot to ask of a grown woman.

I wracked my brain. Had I ever encountered an adult named Annabelle? YES. I had. Annabelle something-or-other, from that dinner and a movie show! And not only did that woman rock the name, she also had an ethnic last name — and awesome glasses long before glasses were hip.

Sold. Ray liked the name, too. Fast forward 13 years, and there Annabelle and I were last night, at a reading in Scottsdale featuring none other than Annabelle Gurwitch. I go to (and once in a while take part in) readings all the time, but this was Annabelle’s first. She LOVED it, had wise and kind comments to make about just about every performance, and gasped when she saw Annabelle Gurwitch’s shoes. (I noticed them, too, super cute orange T-straps. I also loved and related to her piece, taken from her book, “I See You Made An Effort: Compliments, Indignities and Survival Stories from the Edge of 50.”)

That would have been enough. We could have headed straight home after the reading. But I took a chance.

“Hi,” my Annabelle said, sticking out her hand. “My name is Annabelle.”

A slow grin spread across Annabelle Gurwitch’s face. She stood up and came around the table. I don’t think she meets many Annabelles.

“So, you are going to think this is really weird,” I told her. “But she’s kind of named after  you.”

I explained — the quest for the right name, the glasses, the Jewish last name. She nodded, pointing to my own glasses. She totally got it. If she was creeped out, Annabelle Gurwitch didn’t show it. She could not have been nicer. Truly. She pulled her tiny namesake aside, engaging her in conversation. They talked about ballet and fashion design and the role of the producer in a theatrical performance (that’s what Annabelle says, anyway) and how my Annabelle didn’t used to like her name (news to me) but likes it now (phew) and later Annabelle told me the older Annabelle talked to her like she was really important. “I liked that,” she said.

I loved it. And only after we left did I realize what a risk I took. It’s one thing to not be able to read T.C. Boyle’s books anymore. If Annabelle Gurwitch had been bitchy, would I have had to change Annabelle’s name?

But that didn’t happen. And now I’ll gush: Annabelle Gurwitch is smart, funny, beautiful, accomplished,  kind, a writer — and at 50 she’s still adorable, still rocking that name. She still has excellent glasses. I can’t think of a better namesake for my daughter.


Scroll
Party Hat

Kidploitation? Or something else?

posted Monday June 9th, 2014

sophiehat

The other day I did some housekeeping on Girl in a Party Hat, which included updating the blogroll, and I was struck by how many of my fellow bloggers have stopped blogging — or, at least, haven’t updated their blogs in a year or two.

I get it. I started my blog when Sophie was 5. Today, at 11, she’s so savvy she writes guest posts, wants to read what I write, dictates when I can and can’t take her photo (on Saturday it was okay, as long she added a long orange braid to the ensemble I was eager to capture), and the other day she asked to borrow my computer because, she says, she’s writing a book. Her self-awareness prompts the same in me. Some days, it does feel invasive, writing about Sophie. More and more, I self-edit. Or try to, anyway.

And yet I still feel compelled to do it. Last week, Brain, Child published a piece I wrote about Sophie and puberty. Last month, I wrote a cover story for Phoenix New Times about the year-long struggle to find a charter school that would take Sophie. My friend Robrt included some images of Sophie in a show at his art gallery. Once in a while, KJZZ (the local NPR affiliate) is kind enough to share the latest in what I’ve long called The Sophie Chronicles.

Oversharing or illuminating? (Wait — don’t answer that.)

Why do we write about our kids, document their every move on Facebook and Instagram, in blog posts and elsewhere? I don’t know about anyone else, and maybe my own reason is BS, but I’ll share it anyway. I began Girl in a Party Hat in an attempt to document what Sophie’s life is like, to show how similar she is to typical kids and also how different. And, to be honest, to figure her out.  Before Sophie, I had never found writing to be therapeutic (to the contrary, it’s always been a painful, tooth-pulling process for me — which sucks since I chose a career as a journalist) but GIAPH did become for me a sounding board and a confessional and I still find often that after I finish a post I feel a sense of peace.

Before Sophie, I’d never met another person with Down syndrome. If this blog or the other things I write help even one person to be a little less wary of people with DS, if anyone finds it relatable — parents of kids with or without disabilities — it’s all been worthwhile.

All of which sounds more defensive than I meant it to, and it’s not even the reason, really, that I set out to write this post. I wanted to tell you about My Star Wars Family. Whether you have a spare 4 minutes or not, stop what you are doing and watch it. It’s phenomenal. I don’t want to tell you much more than that.

When my friend Timothy Archibald recommends something, I know it will be stellar. Tim’s own photography — which I’ve admired since we worked together many years ago — is truly great.  I remember that he and I used to drive around crappy parts of town, looking for a story idea. Turns out, that’s the worst way to find a story idea. And ultimately, Tim had no shortage of ideas — he gets high profile commercial and editorial work and (something I recall from our days working together) he tends to find a personal project in an assignment. You can see it all at timothyarchibald.com. But my favorite work of Tim’s is about his older son, Eli. I’ve written about Tim and Echolilia before in a little series I did for GIAPH called “Should We Be Writing About Our Kids?” You can learn more at echolilia.com.

Four years later, I’m still asking the question: Should we be writing about our kids, particularly our kids with disabilities? Should we be photographing them, letting other people photograph them? I’m too close to my own work to say anything there, but when it comes to a journalist/artist named Annalisa Brambilla, the answer is YES.

When he posted the video, Tim wrote this on Facebook: I can’t repeat this enough: Brambilla was an outsider, a journalist, an artist, but these images feel like they were made by the family themselves, and some of them were. I do believe this is the way stories will forever be told when they are told well.

I completely agree. Make sure you watch My Star Wars Family.


Scroll
Party Hat

The Miracle Workers

posted Friday June 6th, 2014

miracle

In an effort to break up the “Full House” rerun marathon threatening to continue through the summer,  last night I took the girls to see a community theater production of “The Miracle Worker.”

I was a little obsessed with Helen Keller when I was a kid, and Sophie already owned a copy of the script for “The Miracle Worker,” thanks to her own obsessive play shopping at our local bookstore, which doesn’t have a kids drama section. Hence, Sophie owns a few Neil Simon plays and a copy of “Our Town” along with “The Miracle Worker.”  She obviously hadn’t gotten much out of whatever perusal she’d made of the script, because she had a lot of questions.

“Did Helen Keller have heart surgery?” Sophie stage-whispered, a few minutes into the play.

“No,” I whispered back.

A few minutes later: “Did she have a feeding tube?”

“No.”

I looked down at Sophie, who was intently watching the stage.

“Hey, do you think Helen Keller had Down syndrome?”

“Yes.”

The play was quite good, and the girl who played Helen was phenomenal. The role was very physical (obviously, if you know anything about Keller’s story) and she and the actor who played Annie Sullivan had great chemistry. (If you are in town and have a chance, “The Miracle Worker” is playing at Hale Theater in Gilbert through July 5.)

While Sophie was busy trying to compare herself to Helen Keller, I focused instead on how different my daughter is from her, trying to imagine what that must have been like, to have a child locked up like that. I realize, writing this now, that the similarities to autism are certainly, painfully there — though the tragedy is that in so many cases, when it comes to autism there’s not much an Annie Sullivan can do to unlock that door that stands as a barrier to communication.

But Helen Keller and Sophie aren’t so much alike. At least, I don’t think so, although a few times during the play, I found myself trying to keep Sophie quiet as the Kellers were battling Helen, and had to shake my head at the coincidence. And I wonder what Sophie saw that so convinced her of it. Maybe, simply, it was the fact that she doesn’t often see depictions of people with disabilities. None of us do.

One unmistakable similarity, despite the time and the diagnosis was the miracle worker, herself. I’ve been on the inside looking out for so many years, I hadn’t stopped to think about how necessary teachers, therapists and other care givers are when it comes to stopping parents (like me!) from coddling their children, (kindly) stepping in between parent and child to do the tough work that needs to be done. I teared up at the end of the play, as Annie signs “I love you” to Helen, thinking of all of the miracle workers in Sophie’s life. My life, too.

During the play and intermission, and even into the second act, Annabelle and I tried to (quietly) explain to Sophie that Keller was deaf, blind and mute — but didn’t have Down syndrome. I guess Sophie didn’t believe us. After the play we lined up to meet the actors (always my girls’ favorite part) and Sophie posed her question to the 5th grader who played Helen Keller.

The girl looked at me, slightly panicked (standing behind Sophie, I silently shook my head “no”), then back at Sophie and answered, “No, she didn’t have Down syndrome.”

Annabelle, who had been quiet much of the evening, told the man and woman who played Helen’s parents, “That was the best play I ever saw.”

She didn’t say much after the play, either, and I wondered what was going through Annabelle’s head, what she thought of the play — particularly the family dynamics. Annabelle is a bit of a miracle worker herself, when it comes to Sophie, but I know things aren’t always easy for her. Waiting for the play to begin, she was understandably mad when Sophie pushed her away when she tried to give her a hug, and gave her sister the silent treatment for a good, long time.

Later at home, I heard Annabelle say quietly, “You know I love you, Sophie. I’ll always love you.” Sophie apologized quietly.

I wonder if I would have been as good a sister. I don’t think so.

 

 

 


Scroll
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
Scroll

Archive

Scroll
All content ©Amy Silverman | Site design & integration by New Amsterdam Consulting