Party Hat

Pointe Taken

posted Friday January 9th, 2015

pointe

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.


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Party Hat

Tatum’s Dad

posted Wednesday January 7th, 2015

hoodstock

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.


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Party Hat

Table for One

posted Tuesday January 6th, 2015

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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.

“Good.”

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.

“What?”

“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.


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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.

 


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Party Hat

All The World’s A Stage — Maybe

posted Thursday December 11th, 2014

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I have a lot of uncertainty when it comes to Sophie — her future, her academic abilities, whether or not she brushed her teeth before bed last night. But one thing I know for sure: The stage beckons.

This is a kid with a flair for the dramatic. She will take any opportunity to perform, and if there isn’t one, she makes her own (sorry/not sorry if you were at Phoenix Public Market the other night and were “treated” to Sophie’s impromptu performance of “All About That Bass”). Even a selfie is an opportunity to act. There’s a serious side, too — she is currently writing scripts with two different adults, and her first stop at any bookstore we visit is the play section.

So it’s only natural that she wants to take drama as her elective at school. But there is no drama elective at Sophie’s school. This semester she took visual art and computers; next semester is PE and Spanish. All good, worthy choices and she’s loved what she’s taken so far. But she’s figured something out — and she won’t let it go.

Apparently the elective options at the “gifted” academy on her junior high campus are different than they are for the general population. The gifted kids can take the electives Sophie can take, but no one at Sophie’s part of the school (which is not just for kids with special needs, it includes all the “non-gifted” kids) can take the electives at the gifted school. And the gifted school offers drama.

Sophie’s been bugging me for weeks to ask if she can take drama and yesterday I finally caved and sent an email to several school administrators, asking if it’s a possibility. I told Sophie she needs to be patient until we get an answer back, but that didn’t stop her from asking every adult in the school office this morning when I dropped her off.

“If I had a magic wand, I’d do it,” one kind staffer told her, adding behind her hand, “but you know, it might open a can of worms.”

Ugh. I think I pushed too far this time, I said to a friend afterward. I get the broader implications of letting a kid from the general population into the gifted school — even for one class, even if it’s drama, even if it’s Sophie. My friend shook her head.

“You know, someone once told me I was opening a can of worms and I’ve always regretted listening to that,” she said. “Go for it. It would be good for Sophie, but there’s a bigger reason to do it.”

Tears in my eyes, I nodded. And so we will go for it, worms and all. I’ll let you know what happens.


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Party Hat

With Gratitude

posted Tuesday November 25th, 2014

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“Who are you talking to?” I stage-whispered. It was early, too early for most of the regulars on Sophie’s call list.

“Papa,” she whispered back, immediately turning back to the call, happily snuggled on the living room couch under several soft blankets. I stood, waiting for it to end; my father is not a big phone guy. In fact, he’s not particularly chatty at all, as we’ve teased him over the years. Particularly with the grandchildren.

But this call went on. And on. It was a good three or four minutes. I could only hear Sophie’s end; it was hard to tell what was being said. Something about holiday cookies, and the cousins who are set to arrive this evening.

As the call wrapped up, Sophie sat up a little straighter and said, out of the blue, “My mom says to tell you that she loves you!”

I had said nothing of the sort. Ray and I have a habit/superstition of almost never ending a call without an “I love you.” My mother and I always say it, and I pretty much announce it every time one of my kids leaves the room, let alone a call. But my father? Never. I think once, when Annabelle was 2 or 3, the two of them were sitting side by side on the couch and she blurted out, “I love you Papa!”

As I recall, there was a long pause and then an awkward, “I love you too, Annabelle.”

But I can’t be sure it’s a real memory or something I imagined.

I didn’t imagine this one. “SOPHIE!” I admonished in my stage-whisper, my cheeks hot. “Why’d you do that?!”

She didn’t even look in my direction, just kept talking, eventually saying good bye and hanging up.

Later, my mom reported the response from the other end: “That’s nice.”

Hey, I’ll take it.

“Do you think Sophie knew what she was doing?” I asked my mom.

“Of course.”

Me too.

This Thanksgiving, I am grateful for family members big and small, gruff and cuddly, and for a daughter who sees us all for what we are — and what we can be.


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Party Hat

A Happy Accident

posted Monday November 24th, 2014

photo-409

The sound of ceramic hitting Mexican tile was unmistakable. The only question: What broke?

I hauled myself off the couch to find Sophie in the kitchen doorway, a dish towel in hand, my favorite mug — sweetly shaped, with a pale pink floral pattern and an “a” to match Ray’s brown “r” version, so cute that I’d posted a photo on Instagram of our morning coffees side by side just the day before — in shards.

“It’s okay. But go put shoes on!” I ordered, shooing her away for safety. “Then come back and tell me what happened.”

As I gathered the broom and dust pan, I marveled at how seldom things break in our house. It’s more often an exuberant poodle than a kid with special needs. In fact, Sophie is the least clumsy person in the family, her fine motor skills diminished by Down syndrome but coaxed by years of therapy. She’s deliberate in her actions and rarely trips or spills, though at 11 she still requests her cranberry juice in a “to go cup with a lid” when we eat out.

Indeed, there was a good explanation. The cat was on the kitchen counter by the sink, Sophie explained. Sophie knows I hate it when the cat does that, so she tried to get Lulu down. (Sophie can often be spotted carrying the cat, Olivia the Pig-style, away from places where the cat’s not supposed to be.) The mug, set carefully on a dish towel to dry (too good for the dishwasher) was in the way, and slipped off the counter as Sophie grabbed the cat.

“Don’t worry about it!” I told Sophie, pulling her into a hug. “I’m just glad you are okay. Thank you for getting Lulu down.”

I was bummed, but we have other cups. I didn’t give it much thought. Not as much thought as Sophie did.

Last night, a few days after the incident, I was grabbing take-out for dinner when my phone rang. It was Sophie.

“If there’s a bag from As You Wish on the table when you get home you should open it,” she said, referring to the paint-your-own-pottery shop at the mall.

Sure enough, there it was — with “A” painted several times in bright red paint. Ray had gotten in on the act, too, making stripes on the other side.

“That’s the most beautiful mug I’ve ever seen!” I told both of them. It’s true, it is.

This morning, I’m sipping coffee out of my new mug — and contemplating an accident for Ray’s old coffee cup.

 


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Party Hat

The Benign Mitzvah

posted Thursday November 6th, 2014

 

I’ve been spending quite a bit of time in synagogue.

No, I haven’t found religion. It’s bar/bat mitzvah season. Those kids my friends and family had 13 (or so) years ago are all grown up (sort of) and many are participating in the traditional coming-of-age ceremony for Jews.

I love watching these kids get up in front of dozens of people and practice what others have preached for centuries — continuing traditions, creating their own community, demonstrating pride in their heritage.

I want that for my own kids. Ray agrees. He was raised Catholic, but abandoned that ship long ago and we’ve raised our girls as Jews — if you count apples and honey at Rosh Hashanah and seders with themes like “Heavy Metal Seder” and “Passover on a Stick” at Passover. They’ve had no formal Jewish education; they are certainly not ready for bat mitzvahs.

And yet, if it’s going to happen, it’s time. Past due, actually.

So this afternoon, I have an appointment with a rabbi. I’m starting at the temple where I was bat mitzvahed. I called last week to get on the rabbi’s schedule and the receptionist asked me to spell my last name. I started very slowly then stopped and said, “I guess I don’t have to spell so slowly for you?”

She laughed. In Phoenix, one grows accustomed to spelling an “exotic” name like  Silverman several times — no one ever gets it right. I often find myself translating Yiddish terms,  explaining even the most basic Jewish holiday. My high school was lily white; as a Jew, I was the minority. I still am, most of the time. So are my girls.

Before Annabelle was born, Ray told me, “I want the girls to know they are Jewish. I don’t want someone else telling them.”

I loved that. But actually educating Annabelle about Judaism has been awkward, since she announced when she was a toddler that she doesn’t believe in god.

No surprise, springing from our firmly agnostic household. I stopped believing when I was in first grade — I remember where I was standing in the Temple Solel arts and crafts room, shellacking a challah or gluing macaroni into the shape of a Star of David, when I suddenly stopped and thought, “Oh, this is all supposed to be about god? Well, that’s ridiculous.”

I did enjoy the arts and crafts, though. And the music and feeling of community. But after my Bat Mitzvah, as I like to tell people, I took the Lucite and ran. (If you were around in the mid 70s, you’ll get the joke.) My religious education ended there — and I was guilty about that for a long time. I’m not anymore. I no longer went to services, and yet, my Jewish identity remained. I’m proud to be Jewish, and I still remember the words to the prayers, which I murmur along during all those bar and bat mitzvah ceremonies, feeling connected — to something, if not a traditional sense of god.

It’s hard to imagine Sophie having a bona fide bat mitzvah, which is on my list of things to discuss with the rabbi today. I have talked about it with the girls, and they decided they’d rather have a b’nai mitzvah, which means two people doing it together — and I love that idea. Annabelle says she doesn’t want the spotlight all to herself, she’d rather be there to help Sophie. Sophie says she’ll leave the Hebrew to Annabelle. I think they will both find meaning in studying Judaism and learning a torah portion (a story from the Old Testament), and Sophie’s already planning her “mitzvah project,” which involves giving back to the community in some way.

For my part, I like the idea of educating our friends about our heritage, putting together a program that explains the meaning behind the traditions. I haven’t seen a copy in years but I still remember the program my mom made for my bat mitzvah; she cut out tiny illustrations from The New Yorker and put them between the prayers and it made me feel so special.

Ray has been okay with it so far. “Huh?” he asked, when I told him the latest plan. “A benign mitzvah?”

That sounds about right to me. This morning I called to confirm my meeting with the rabbi. “Wait a second,” his secretary said. “He wrote it his calendar himself. Amy Silverstein?”

I’m not religious but I’m big on signs, and that might be a sign that this won’t be the right place for us. We may go rogue — but we’re going to do it, one way or another.  I’ll let you know when we have a date.


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Party Hat

Always Look a Gift A+ in the Mouth

posted Wednesday October 22nd, 2014

reportcard

I dragged myself into the house the other night after work, exhausted, preoccupied with how quickly I could make dinner and hit the couch, when Sophie stopped me in my tracks — literally.

“Look!” she said, pulling me over to the refrigerator, where she and the nanny had posted Sophie’s first junior high school report card.

“Can I sleep in your bed?” she asked. That’s Sophie’s question these days, pretty much anything might qualify her for her favorite reward, an all-night spot between her parents.

“Wait a second, let me see this,” I said, slowly digesting the grades. A B+ in Science, an A in Chorus, an A+ in Art. Okay.

But an A+ in Language Arts? I  knew Sophie had done very well on several vocabulary tests, learning words like anthropomorphic and sidle. Then I thought about the parent/teacher conference I attended a few weeks ago, and how the language arts teacher looked at me with sympathy and suggested that I buy Sophie a few books from the Madeline series so she gets the hang of actually finishing a book, rather than just collecting age-appropriate chapter books she’ll never read.  Now an A+?

And an A+ in math? Please. As far as I know, no one on either side of our family has ever gotten an A+ in math. And I’ve watched Sophie struggle with simple addition, let alone multiplying fractions, the current curriculum in her class.

An A+ is, I suppose, one way to keep an annoying parent from calling, right? In my case, not so much. For me, a grade like that is a red flag, a sure sign that my kid is your mascot, not your honors student. On the rare occasions I’ve taught over the years, I’ve avoided the A+ like the plague. Really, who’s deserving of that? And what incentive is there to go on, to improve?

And yet — that’s a pretty freaking awesome report card, right?

I stood in front of the fridge, resolving the call the teachers, but knowing I wouldn’t — not for a little while, anyway.  Sophie deserves to bask in the glow. I’ll take a little of it, too. I’ve never been the type to believe in an A for effort; in my world, you better put out the work befitting of the grade. But I’m often reminded that Sophie has rocked my world — in a good way.

I turned from the refrigerator and reached down for the littlest sixth grader ever, pulling her into a hug.

“YES!” I said. “You can sleep in my bed tonight. I couldn’t be prouder of you!”

And I meant it.

 


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Party Hat

Sneakers

posted Wednesday October 15th, 2014

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Last week, Annabelle and her good friend Sophia performed a song in front of their entire school. I’m partial, but I can’t stop watching the video — or asking Annabelle to perform the song for me again or to write down the lyrics. Annabelle wrote the song (among others) and taught herself to play the ukulele this summer. I love that she has music as an outlet — particularly since Sophie shuts me down every time I so much as hum. Here are the girls’ audition video and the song lyrics. I hear that next they are planning to perform a song by Sophia. I can’t wait.

SNEAKERS

People gathered in a park
all the sneers, all the remarks about people’s sneakers oh oh.
Some were weaker, some were cheaper, some would only last a week
or some were just a little bit old fashioned.
But they all run fast,
they all won’t last forever.
And I’ll bet you that they’ll bring someone together.

(CHORUS)
Cause everyone needs everyone
and everything needs everything.

People gathered in a mall
all whispering to the wall about people’s purses oh oh.
Some were weaker, some were cheaper, some would only last a week
or some were just a little bit old fashioned.
But they all carry,
they all bring stuff wherever.
And I’ll bet you that they’ll bring someone together.

(CHORUS)
Cause everyone needs everyone
and everything needs everything.

ukeWe all depend on the end
and we all started at the heart.
Until we think about our plan to understand this world
then we all put on sour faces and insult other people’s sneakers.
Is that what this is all about now?
(REPEAT)

(ukulele solo)


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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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