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Sophie Tours Junior High with a Very Special Escort

posted Tuesday January 28th, 2014

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A note came home from the principal last Friday.

Tell Sophie I’m wearing purple on Monday! 

It was not your typical note home. It is not your typical situation. I’ve been talking with the principal at Sophie’s elementary school since August about where she’ll go to junior high. It’s a big decision for any kid, but more so for Sophie. A press release reminded me yesterday morning that this is National School Choice Week.

Not quite. Not for kids with Down syndrome, not in Arizona, anyway. Not for Sophie.

When we met in August, the principal gently suggested that the feeder junior high in our district would be the best spot for Sophie. I resisted, claimed I could find the “perfect fit,” and set off to do just that, touring charter schools, searching for private options, even toying (for about 15 seconds) with home schooling. I watched as pretty much every friend Sophie has signed up for a boutique school run by the district that she can’t attend.

I sat in the principal’s office earlier this month. I’m ready to look at the feeder junior high, I said. He smiled gently and never said, “I told you so.”

There’s nothing special about this junior high except that it is the school Sophie is “supposed” to go to, and it does have a special education department. It’s big, it’s not really in our neighborhood, we don’t know many kids (if any) who are going. It doesn’t have a particularly good reputation — for anything. Not a bad one, either. But in a world where you’re supposed to be able to retrofit your school choice experience to your precise needs, it feels clunky. It’s also pretty much all there is.

“I want to take Sophie over myself,” the principal said. He explained that he figured that if the folks at the school saw that someone in a position of authority was taking an interest in Sophie, they would, too. So it was arranged.

Sophie planned a special outfit yesterday — she tucked her hair back in a headband (after announcing she’s growing out her bangs), chose a sparkly sweater, cool pants and shoes and her “What Does the Fox Say” shirt.

Shortly after lunch, I had a note from the principal:

Hello Amy!  We’re back and we both had a great experience.  We spent a big chunk of our time in the library checking out their collection.  The librarian was very helpful.  We also sat in on auditions for a solo performance with the choir…..which Sophie loved.  Touring the lunchroom and stage area was also very important.  Sophie asked to go back and take one more look at the Choir room which we did.  At that time the teacher was on her prep period and gave Sophie lots of information, listened to her sing and watched her dance.  The principal caught up with us to chat for a bit.    It was  a very nice experience and I think Sophie enjoyed it.  I know I enjoyed OUR time together.  Thanks for letting me take her.

When I got home, Sophie confirmed that it was a good visit, reporting that this school has choir and cheerleading and the school color is purple.

“I want to go there!” she announced, grinning.

It’s a start. And it’s all thanks to the principal. How many school principals would take an entire morning to take one kid to tour a school? (Remember, this is also the guy who wore purple fuzzy pajamas to Sophie’s birthday party; they do share a birthday, after all.) This guy’s a keeper. I just wish we could keep him.

But we don’t have to leave him quite yet. He’s scheduled a tour of the feeder junior high for Ray and me next month, and is insisting on coming along.

They say it takes a village and it’s true. But sometimes that saying discounts the role of the individual: the surgeon who fixed the hole in Sophie’s heart, the physical therapist who taught her to walk, the ballet teacher who makes her feel included, the best friend who makes her so happy.

And this guy.

 


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Party Hat

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Reports of the death of print journalism have been greatly exaggerated, and if you don’t believe me, consider the intense debate in the past few days over two magazine covers.

Print journalism isn’t dead, and neither is its struggle to figure out how to depict women. Consider Lena Dunham on the cover of Vogue and Hillary Clinton on the front of the New York Times Magazine.

Vogue wins this one, big time, if you ask me.

Yes, yes, there are stories accompanying both covers. I found the NYT piece okay, but a bit of a predictable snooze — we get it, Hillary’s the center of the universe. Duh. In contrast, I really enjoyed Vogue’s piece about Dunham — I learned a lot and love her even more. (And yes, I love Girls — go ahead, judge away.)

And yes, Dunham’s been photoshopped.  Again, how do I put it? Duh. It’s Vogue. What’s amazing isn’t that they photoshopped her but that they put her on the cover in the first place. Lena Dunham is no supermodel. She’s not Cameron Diaz or even Drew Barrymore. She’s a little frumpy. (A lot frumpy in her role on Girls.) But not on the cover of Vogue. She looks fucking awesome — but in a Lena Dunham way. Her expression is wry, her hands posed in way that perfectly evokes her personality. Go Annie Leibovitz. I LOVE IT. If they hadn’t photoshopped her, everyone would have complained about that.

Dunham’s into fashion, as I learned in the Vogue piece. Zac Posen was her babysitter! Now, why he let her wear that yellow dress to the Golden Globes is another story, but I loved seeing her in Vogue and I don’t care that they photoshopped her. It’s not like they gave her 6-feet legs and long blonde hair. She’s Lena Dunham in Vogue.

By contrast, I’m so pissed at the New York Times. When’s the last time you saw a male politician look that hideous on the magazine’s cover? Never.  I did a search to see who designed this train wreck, figuring it’s the replacement for that super design guy who recently announced he’s leaving to go to Apple. To my surprise, no, he’s the one who did it to her. And yes, I mean it when I say “did it to her.” Would anyone do that to Bill Clinton (okay, maybe they would) or any of the Bushes or an Obama? NO THEY WOULD NOT. Hillary Clinton has never been off limits when it comes to insults and purposefully unflattering photos and really, what the fuck does she have to do to escape it? I guess it stopped for a while when she lost in the presidential primary. Okay, be a loser, Hillary. That will get you some love.

If that NYT cover doesn’t scream that even the liberal media elite is terrified of a woman in power, I don’t know what does.

I work in journalism. Not at the level of the NYT or Vogue, to be sure, but we debate covers every week at Phoenix New Times. My boss would never allow for a cover like the NYT one, and not just because it’s a hideous image. He’d laugh and say, “Don’t be so obvious!” Why put  “Planet Hillary” under a picture of planet Hillary? Try a little harder, he’d tell us and he’d be right. And what about all the fine print you can’t read? (Our art director would NEVER put crap like that on the cover; I can’t wait to discuss this with him tomorrow!)

Here’s the real reason the NYT got away with putting that image on the cover and Vogue photoshopped Lena, and it could, to be honest, be why I’m sympathetic to Vogue: cover sales. The NYT magazine gets shoved in your Sunday paper; it’s not hanging at news racks and perched in stands on Walgreens from sea to shining sea. Who would pick up that Hillary cover? I can barely look at it.

So yeah, good for you NYT mag, you got a bunch of mentions on Twitter. You took a pot shot at a woman who’s simultaneously one of the most powerful women in the world and the easiest target there is. And you didn’t have to risk losing cover sales. Nice.

Real journalism should show people as they truly are, and in this case, neither publication did that (exactly). But Vogue stayed true to its vision (albeit a shallow one), while the NYT got ugly. (Both literally and figuratively.)

I’ll stick with Vogue.


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Party Hat

Sophie at the Salon

posted Wednesday January 22nd, 2014

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I don’t remember what my mother said when I told her Sophie had Down syndrome. I don’t remember what Ray said, when he heard the news, or even what I said.

But I will never forget what my sister said.

“Amy will always have someone to get a pedicure with.”

It was exactly what I needed to hear, even though I didn’t know it at the time and even if, technically, it’s not always true. So far, she’s been right.

Annabelle isn’t a sure thing anymore, not since I switched to the cheaper salon where the ladies are “mean” (her words) and the decor isn’t nearly as nice as the nail bar down the street with the velvet seats, chandeliers and continuous loop of “Breakfast at Tiffany’s” and “Devil Wears Prada.” Plus, Annabelle prefers her own handiwork.

Sophie, however, is always up for a pedicure. The little salon we go to is pretty dingy and it’s true, most of the employees tend to be all business, but somehow Sophie manages to break that down.

Everyone there knows her name  – it’s like being in a cross between an episode of “Cheers” and a scene from the movie “Steel Magnolias” — and even the grumpiest nail tech smiles when she sees her. True, by the time we leave, everyone (including me) is looking a little weary. But hey, these ladies (and one man) work for tips. And I tip well.

For Sophie, this is not simply about getting her heels buffed and toes painted. This is a real social outing. She marches in and takes her time picking a color (she’s been known to demand 10 different colors for 10 different toes), then requests adjustments on the water temperature and seat height. She grabs the pumice away and does that herself, and spends a long time debating whether to get a flower on her big toes at the end. Then she carefully pads over to the drying section, picks up a magazine, and sits back.

She does not go unnoticed by the other patrons. She is almost 11, but Sophie is still shorter than most kindergarteners; when she opens her mouth, she tends to take people by surprise. One time not long ago, I was getting my nails done on the other side of the salon, a captive, able to hear Sophie’s incessant (usually polite) demands but unable to do much about them. (Let’s face it, even when I tell her point blank to stop, she usually refuses.)

So I sat quietly, cringing a little and observing the action from across the room. Others were watching too.

“Oh yes, I’ve seen her here before,” I overheard an older woman say to her friend. “She’s like a teeny tiny adult.”

And in a way, in the pedicure chair, Sophie  is just like everyone else. The other day she asked one patron for advice on what to do in Maui this summer (after eavesdropping on her conversation) and had a 10 minute conversation with another about Tim Gunn’s new show. After discussing Gunn, Sophie and her new friend flipped through a fashion magazine; Sophie pronounced most of the outfits “hideous.”

The woman raised her eyebrows when I told her Sophie was 10 and a half.

“Really?” she asked.

“Well, yeah,” I said. “We don’t have a particularly tall family, and people with Down syndrome tend to be really short.”

“She has Down syndrome?” the woman said, looking surprised. “I couldn’t tell.”

Every time, just when we’re on the verge of overstaying our welcome, suddenly  my nails are finished, Sophie’s toes are dry, and it’s time to go. Any time I sneak in by myself for a quick touch up, everyone asks where Sophie is; they seem to genuinely miss her.

Or maybe it’s the tips.

My sister was in town with her family over the holidays, wearing flip flops (because it’s Phoenix) and complaining about her toes. My mom and I thought we should take all the girls to see “Frozen” (again) but in the end, Sophie and her Aunt Jenny took off on their own. Pedicures, of course.

They had a great time.

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Party Hat

Camelot

posted Wednesday January 15th, 2014

I met with the principal at Sophie’s school yesterday. It had nothing to do with what’s going on at school — not this school. It was time, finally, to pull the trigger. To figure out the next step toward junior high.

I won’t bury the lede. At this point, if I had to make a decision, I’d send Sophie to the feeder school, the standard-issue junior high in our district.

The last option on my list.

That sounds shitty, like a slap, and it shouldn’t, because the truth is that I haven’t even visited that school. That’s why I was in the principal’s office; he had promised to set up a tour when I was ready, to find the right contact person, to make things okay. (Or as close as he can.)

He’s such a great guy. He’s the one who wore fuzzy purple pajamas to Sophie’s birthday party last year (they share a birthday, as she reminds him whenever she sees him). He’s the one with the inspirational messages on the walls of his office; I’ve written about them before.

Yesterday I fixated on one on the back of the door, just above his head, in all red:

ALL MEANS ALL

And it has, for Sophie, at this school — to a very large extent, maybe the largest possible. True, I had to fight to get her in and the principal at the time was not my favorite. We’ve had our ups and downs at this little K-5, but looking back, it’s been nothing short of remarkable. Sophie is truly a part of a community — she knows everyone, they know her. I’m quite sure she’s overstayed her welcome with both adults and kids, in a few cases, but she’s also made true friends. She has learned so much. And I like to think Sophie’s taught the folks here a thing or two, as well.

A friend of mine — the  mom of another kid with special needs at the school — calls the place Camelot. With caveats, for sure, she remarked recently after a school choir concert as we struggled to chat over the din in the gym, but Camelot.

And next year? We stared at each other, neither sure what to do with our daughters, even after months of research. So we wrapped our winter scarves tight around our necks, gathered our families, and went home.

I’ll just say it: The future is grim. Oh, I know, Sophie will be awesome wherever she goes, she’ll win hearts and minds and all that crap. Before I know it, I’ll be writing about that. But before that, I’m going to write about the fact at for all practical purposes, once Sophie leaves fifth grade, inclusion will end. For junior high, anyway.

I’ve ventured out — toured schools; talked to parents, teachers, lawyers; hired a consultant; googled and read, everything short of praying (though that’s been recommended). From time to time, I’ve turned to the Church of Facebook, kneeling at that altar to ask for advice. Last week a Facebook acquaintance — I’ll call her that since we’ve never actually met — commented:

Arizona has a tremendous amount of school choice available….You’d have to search pretty hard to find another state with the amount of options that we have in AZ. I’m sincerely sorry that this quest has proven to be so difficult for you and your family.

I’m sorry, too. And sorry for all the whining I’ve done. But when it comes to Sophie — and probably most kids with special needs — it’s simply not true. And pretending that it is is not only insulting but dangerous.

Maybe that perfect school is out there and I simply haven’t found it. But as much as I’m quick to doubt myself in other realms, at this point I’m pretty sure I’ve rattled all the cages in town.

Bottom line: I decided to take full advantage of the school choice thing when finding a school for Sophie. We looked hard and found the right place for Annabelle. There had to be just the right niche for Sophie, right?

As I told the principal yesterday, here’s what I’ve learned. Please, tell me if I’ve left a stone unturned:

*There is likely not a charter school for Sophie. We put in for lotteries at two schools; both would be good choices (with caveats) but her chances could be as crappy as 1 in 100. I’m not holding my breath. Most of the charters I researched and talked to (including Annabelle’s) made it clear that they don’t have appropriate special ed services for Sophie. I could force her way in; that wouldn’t be good for any of us, most of all Sophie.

*There’s not a public school outside of our district, Tempe. Yes, technically, you can open enroll a kid out of district in Arizona. Even a kid with special needs. A kid with an IEP? Not so easy — and almost certainly impossible, particularly at the super-popular schools I’d like to send Sophie to. (Her lawyer confirmed this for me.)

So much of this skirts the law — yes, legally all public schools (and that means charters) are supposed to provide appropriate services. And the choice to open enroll should be as open to Sophie as to other kids. But in reality, it is not.

*There’s not a private school. There are some terrific schools — for high achievers. The private school I found for special needs kids isn’t quite right for Sophie. And we are not interested in a religious school.

*No, I’m not home schooling. And if you know me at all, you are applauding right now. Plus, Sophie needs to be around her peers.

*There are no other viable public school choices in Tempe. Then I turned back to Tempe. A friend urged me — rightly — to figure out a way to keep Sophie with her peers, her classmates, the kids she’s known, in some cases, since pre-school. Her best friend. A very good point, and the bright side of not being able to find a perfect boutique school. But that is sticky, too, and not only because some of those kids will go out of the district or to charter schools. It’s because Tempe has shut Sophie out of that choice.

A few years ago, the junior high across the street from Sophie’s elementary school closed, due to declining enrollment. Blame the charter schools. I did — even as I was guiltily pulling Annabelle out of public school to send her to one. The school stood empty and lots of options were discussed — a charter school collaboration with ASU or maybe Sophie’s school could be a K-8.

In the end, the district decided to go head to head with the boutiques — creating an “international academy” that will someday (they hope) house a prestigious IB program.

Mediocre students need not apply.

Well, technically, we could have petitioned, brought in the lawyer, demanded fair treatment — but my understanding is that this school has no special education services in place (not the kind Sophie needs, anyway) and all I’d be doing is making a point. And enemies.

I heard a rumor that more than half of the fifth grade has been accepted to the international academy. Many more will go to charters or out of the district. That will leave a few to go to the feeder school. It has a gifted program, so most likely any of the higher achievers left in the pot will leave for that.

I’m guessing Sophie will be at that school with dozen or so kids. Mostly “resource” kids.

“So what’s she bitching about?” you might be asking yourself. Sounds like that’s where Sophie belongs. And maybe it is. But so much for inclusion. And so much for school choice.

ALL MEANS ALL.

I stared at the words over the principal’s head and I didn’t cry, even when he offered to come with me on the tour of the big, scary junior high. Even when he offered to bring Sophie over himself. She’s excited about it — weeks ago, apparently, her special ed teacher told her he spoke with the resource teachers at the junior high and they can’t wait to meet her.

For her special ed teacher, it was a foregone conclusion. Maybe it should have been for me, all along, too. I’ll probably always be on the lookout for the right junior high for Sophie, the way I keep an eye out for Holiday Tic Tacs at Walgreens all year.

Maybe this junior high will be Sophie’s dream school. As a friend observed not long ago, the school’s color is purple. They have a cheer squad. Maybe she’ll love it, flourish, learn. Maybe I’ll be just as sad to leave there in three years as we are to leave elementary school. Maybe.

I googled Camelot to make sure I was using the reference correctly, and the following scholarly quote popped up:

“Camelot, located no where in particular, can be anywhere.”


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Party Hat

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I woke up today singing “Good Morning Baltimore,” which is no wonder considering I sat through three stage performances of Hairspray over the weekend.

If there’d been a fourth, I would have been there for that, too.

The musical was performed by Detour Company Theatre, a local theater troupe. As the board member who introduced the show said, the cast members in this weekends’ performances are otherwise invisible to most of us. They are adults with developmental disabilities — with a range of diagnoses both familiar (yes, there were several cast members with Down syndrome, including the young woman who played Tracy Turnblad) and (I’m guessing) not. I nodded as he spoke, thinking how true it is that I encounter people like this so seldom in every day life.

And certainly not 50 of them on stage together in one of the biggest and fanciest theaters in town.

The performance was top-notch; Detour’s productions always are. The actors rehearsed intensely for months, joined onstage by more than two dozen coaches who in many cases literally walked, talked and sang the stars through their paces, and sometimes were just there for moral support.

Probably because I’m a glass-half-empty kind of girl — and certainly because I’m the mother of a future Detour actor (if they’ll have her) — instead of cheering with the crowd, I cried through most of the three performances, particularly at curtain call (curtain calls always get me anyhow), thinking not of what a great opportunity this was but instead of how few opportunities these actors have, both on and off stage, to shine. And who’s here in the audience, anyhow? I asked myself, poking at the wound. Just family members.

The night before the run began, I’d bumped into a super-hip young woman who works in the arts in Scottsdale. “Are you going to see Hairspray this weekend?” I asked her. Her face changed; she couldn’t get away from me fast enough. No, was the unspoken answer. Of course not.

To be fair, that would have been my answer before I had Sophie — and, to be brutally honest — it was my answer for a long time after I had her. My mother has known Sam, Detour’s director, for decades. She’s been going to the productions forever. Several years ago, she finally convinced me to come see a show; Sophie’s beloved nanny, Courtney, was volunteering as a coach.

I could barely look at the stage. When Sophie and Annabelle were invited a couple years ago to play the children in South Pacific, I warmed up a little. But I still had trouble watching. A couple shows later, and I was pushing other people aside for second-row seats at Hairspray. I couldn’t get close enough and like I said already, couldn’t see the show often enough.

Annabelle and Sophie feel the same. They both dressed up in circle skirts and ponytails and danced in the aisles this weekend — crowd warmers.

Annabelle wrote an essay for school last semester about Detour.

Okay, so maybe that super-hip artsy woman wasn’t there (I didn’t see her, but there were hundreds of people at each show, so I suppose it’s possible) but my mother, my kids and I have all been changed by Detour. Three generations. Not bad. I won’t say “just family members” again.

And I was reminded by a cast member after yesterday’s final show that rehearsals for the next one start soon. So maybe Detour is enough.

Of course it’s not. Not even close. And the subject matter of Hairspray was lost on no one. Sam, the director, kept just about everything from the original script (as far as I could recall) but changed the term “Negro Day” to “Special Day.”

I don’t think that was lost on anyone, either.

For more information visit detourcompanytheatre.org.


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Party Hat

2013 Gun Show Comes to an End. Good Riddance.

posted Tuesday December 31st, 2013

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One year not long ago, I resolved that every day I’d write down or photograph a reason to love Phoenix. Another, to quit complaining about the heat. The first worked better than the second, though after each I resolved to quit resolving.

Then I passed a display in my favorite nail salon and made one more resolution. I’m sure the sweet little rhinestone-encrusted gun pendant had been there the last several times I’d visited, which only made it worse that I didn’t notice it til the last week of December 2012, a time when images of guns (and what people can do with them) was fresh in most of our minds, post-Newtown.

It took my breath away and I stood there, purse dangling from my hand, polish wet on my toes, wondering, “Who would wear that? Why celebrate something that can kill people?”

I have never felt comfortable in the presence of any type of gun, never held a real one in my hand, and have written about gun violence and related topics, most recently after the Tucson shooting.

See also: My Isolated Opinion

But it took Newtown, for some reason, to shake some sense into me when it came to the gun imagery that, it turns out, is everywhere.

I started an Instagram account January 1, devoted to sharing an image each day (or close) of some sort of gun depiction. I had trouble naming the project, as @gunshow, @gunshow2013, and just about every version of a name involving “gun” were already taken. So @2013gunshow it was — clunky but it worked. I had no trouble finding images, suddenly I saw them everywhere and friends on social media sent me even more.

By July, I was done. I couldn’t look at another onesie with a rifle, another bumper sticker, another embroidered pillow. I’d posted more than 100 images. Point made.

But — point taken? Not really. Beyond posting about it on Facebook I never tried to promote the Instagram account, and in the end I think I had a measly 50 followers. People who like guns didn’t want my disdain shoved in their faces; the rest didn’t want to look at a picture of a kid with a gun popsicle in his mouth.

It’s like abortion (no matter what your position on it is):  You’re just not going to convince anyone with an image. Maybe with an event, more likely with a personal one.

In the end, several states (not my home state, of course) managed to pass gun control in the past year. Not the federal government, though. The biggest impact of Newtown, best I can tell, is that it sent gun sales through the roof nationwide.

As for me, I’m done collecting images, so please (while I appreciated it over the last few months!) stop sending them. I’m taking a break from this kind of resolution for 2013 and after that, maybe I’ll collect images of daisies. Or poodles.

 


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Party Hat

Still Life with Santa Claus and Sophie

posted Monday December 30th, 2013

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I was collapsed on the couch yesterday, surveying the holiday damage — the game parts on the floor, the containers of sparkly nail polish spilling out of the bin, the candy wrappers and piles of pine needles — when I noticed one element still standing proud, tall and unmarred, a contrast to the teetering candles in the menorah and my natty looking homemade snow globes. Santa Claus. A beautiful, vintage plastic number my dear friend Michele gave me years ago. She knows how much I love Christmas.

And I love this Santa. Watching him watching me, I noticed he happens to be positioned this year on the mantle right next to Sophie’s stocking.

Annabelle’s done with Santa. She probably has been for years, but held up the front til this season, when no one said anything but we all knew it was over. She’s 12. It was past time. A few weeks before Christmas, Ray sighed and said, “It’s just not as much fun this year. Annabelle doesn’t believe in Santa anymore.”

“But Sophie does!” I replied.

He just looked at me. “I know,” I said, looking away. Then I changed the subject.

It’s different. It just is. And I know what you are saying to yourself, or yelling at the computer, you’re horrified that these two black-hearted people are entrusted with the care of this beautiful, sparkly soul, Sophie, a girl who may always believe in Santa Claus.

Sophie’s a gimmee. Of course she believes. Of course she always will; it’s her destiny. When the scientists finally finish mapping our genes, they’ll probably identify a Santa Claus gene on the 21st chromosome, ordaining her belief as surely as her defective heart and the plaque that will one day grow on her brain, giving her early onset Alzheimer’s Disease.

And that’s okay. I love Christmas. I love Sophie. I’m happy to keep it up as long as she wants, to answer her letter to Santa, crumble the cookies and spill the milk, shush her back to bed so I can finish filling the stockings. (Ray, too. He carefully wrapped piles of presents for each of us in mystery paper he hid under the tree in the middle of the night.) Yesterday in the car Sophie asked me if Santa was still watching her and I happily told her that oh yes indeed, he was. He is. (Hey, anything to get a little good behavior!)

But no, it’s just not quite the same as it was when Annabelle believed. It’s part of the arrested development of Down syndrome, not a still life but a slower one.

Later this week, I’ll pack up my beautiful plastic Santa and the rest of Christmas, and next year, perhaps Sophie will prove me wrong.

It’s happened before.

 


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Party Hat

Vintage Christmas

posted Wednesday December 25th, 2013

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In an effort to stick to some sort of budget and keep things lively, I dubbed this year “Thrift Store Christmas.” All that meant, in the end, was that I spent a lot of time in Goodwill buying Pyrex and crystal bowls I used as cactus planters, trimmed with vintage plastic Christmas deer and Santas I found at weekend flea markets. I liked the results so much I kept most of them for myself, scurrying around to buy full-priced gifts and make egg nog, cookies, and spiced nuts to give away.

I was crazed and I wouldn’t have had it any other way. It’s almost midnight on Christmas Eve and I’m pretty sure I haven’t sat down all day. Finally, the stockings are stuffed, the presents are stacked, I’ve eaten Santa’s cookies and taken the Advil Sophie insisted on leaving out for him, and put her back in her room several times with the bitchy admonition that Santa won’t come unless she’s asleep.

I’ve got one last must-see movie on the list — Family Stone — and it’s on as I type this. I’ll fall asleep on the couch before it’s over, crawl to bed and wake up far too early for another day packed with expectations.

I’ll be the first to tell you how much I love Christmas — and I do, with a fierceness that comes from getting something you’ve always wanted. But I’ve come to realize that this Christmas craze, this impossibly long laundry list of must dos, sees, eats and buys, is a Band Aid for the melancholy that sticks around year-long, but mostly this time of year.

I’m not depressed with a capital D — not anymore, a couple years of Prozac in the Nineties and kids a decade later knocked it out of me (though I always wait for it to come back) — but anxious, neurotic, prone to the blues? Yes. You too? Yeah, I figured.

Christmas is no anti-depressant, it’s crack. I’m already anticipating the withdrawal, even as I gaze in anticipation at the obscene piles of gifts under the tree and watch the plastic deer pose campily among the succulents on my kitchen windowsill.

I’m particularly addicted to the quest for tradition, those quintessential moments we bottle and hold onto all year, then attempt to repeat til they are part of our holiday landscape. LIke the hundreds of star-shaped sugar cookies I ice with pink frosting the Sunday before Christmas, for the cocktail party Ray and I have been throwing since before we were married. Or the sausage stuffing we make Christmas Day in honor of his mom, who passed away several years ago.

We are looking for our vintage moments. You can’t buy them at a thrift store, or online. I know, I’ve tried.

I’m lucky. This year I’ve had more than my share of beautiful, bottle-able moments already: Watching my kids perform in Snow Queen; listening to bell ringers play “Silent Night” at the Desert Botanical Garden with my mom; meeting my friend Robrt Pela’s mom and getting to tell her what a good mother she must be; taking Annabelle shopping so she could buy her school friends presents; dancing to Christmas music with Sophie; seeing the look of bliss on the face of the biggest boy in Sophie’s class when we finished his snow globe; plotting Christmas with Ray.

And still, I’m a little depressed. Spoiled? Yeah. But it’s more than that. Another wonderful holiday moment: hearing Judy Nichols read a beautiful piece called “Gifts” at an event last week.

Judy writes of her childhood, of a truly vintage Christmas, one brimming with simplicity, sincerity, joy. At the end she presented each audience member with a plain paper bag; you’ll figure out what was in it when you read her piece, which you should do while I finish watching Family Stone and try to focus on what’s important. (Which is not whether or not the Cornish game hens come out right tomorrow.)

Fly your freak flag. Find your traditions. Merry Christmas.

Gifts by Judith Nichols

On Christmas Eve, the faithful in Hanover, Kansas, gather in their churches, the light shining out through the stained glass windows into the icy night.

At my grandparents’ house, we put on our Sunday best, dresses and Mary Janes, and run through the dark to the car parked by the corn field, breaking through the crust of the new snow, crystals slipping into our shoes and melting.

We squeeze in, my grandmother, mother and father in back, holding my big sister. I sit in the front between my uncle and grandfather.

The headlights shine down the road, illuminating the grain silo by the railroad tracks. We turn at Ricky’s Café, where, this time of year, farmers linger longer over their coffee, waiting for the ground to thaw again.

North Street is decorated with candy canes on the light poles and twinkling garlands that stretch from one side of the road to the other. The frost on the sidewalk sparkles.

We climb past the school where my grandfather is the principal and my grandmother works in the lunchroom, and turn on Church Street, headed toward Zion Lutheran. The bell rings in the steeple.

My grandfather carries me from the cold car up the steps toward the wooden door, hugging friends along the way. I sit on his lap in one of the pews near the front as we watch children act out the nativity.

Near the end of the service, volunteers pass out small white candles, with cardboard circles around the bottom. The lights go out, and someone lights the candle of the person standing by the center aisle. One by one, in each row, the flame is passed from person to person, candle to candle, until the entire room glows.

 My grandfather helps me hold my candle straight, so the hot wax drips on the cardboard circle, not on my hand.

Gently, the organ begins, and everyone sings: “Silent night, Holy night. All is calm. All is bright.” I can pick out my grandmother’s voice. Grandmothers, grandfathers, mothers, fathers, babies, sisters and brothers all sway in time. The last note fades, and there is a hush.

As the pews empty, each child is handed a small paper bag folded over at the top and stapled. I hold it carefully in my lap on the way back. When we get home, my sister and I pour the treasured gifts onto the dining room table: an orange, nuts to shell, and a handful of Christmas candies.

Later, lying on the cot in my grandparent’s bedroom, watching the moon through the window and waiting for the chill to leave the sheets, I sing my favorite carols: “O tidings of comfort and joy. Comfort and joy. O tidings of comfort and joy.”

 

 


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Party Hat

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Fifth grade isn’t quite coming to a close, but I did get melancholy last night, realizing I was wrapping teacher (and principal/therapist/aide/former teacher/office staff) gifts for this school for the last time.

It’s been a nice run, all things considered. Sophie has grown up at this sweet, little neighborhood public elementary school, and so have I.

For one thing, I’ve finally mastered the class craft project. Over the years I’ve had hits and misses — Valentine bingo (not bad), decoupaged frames (not good), and sugar skulls, which have been such a hit we’ve done them every year for as long as I can remember.

I offered to light the menorah for Hanukkah this year, but Sophie’s teacher (very understandably) doesn’t want any religion in the classroom, so we decided on snow globes instead. I got a little nervous; I’ve made a few snow globes in my day, but  never 30+ at a time.

Turned out, it was the easiest (and dare I most successful) craft I’ve done yet.

Now, before you get all excited, these snow globes will not be professional quality. Martha Stewart will not bow at your feet; no one will want to put them in a magazine. They might not get pinned. Some would even consider them a craft fail. But given how easy they were — and (I think) how pretty, I say go for it, Martha be damned.

Instructions:

1. Save jars. 

This was probably the toughest part, since we had to get past 30. (The teacher helped.) Make sure they are clean and that you can peel the labels off without asphyxiating yourself with adhesive remover (which doesn’t work so well, in any case).

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2. Procure toys and glitter. 

I had a bag of small plastic toys already from previous craft projects, and I supplemented with barn yard animals and fairies from Michael’s. If you are here in Phoenix, try ABC Baking — last year I got some pretty good plastic snowmen there. Important: Make sure the toy can be glued to the inside of the lid so that the jar will then comfortably screw on.

3. Use the right glue. 

E6000. That’s all I’m going to say about it. It’s the bomb. It’s smelly and I wouldn’t let the kids use it, but you can glue the toy on for them — easy. And that stuff STICKS. Get it at just about any hobby store.

4. Don’t use fancy water.

Tap water works just fine. Will your snow globe be pristine in 10 years? Probably not, but who cares.  I have some that are a couple years old and look great.

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5. Get crackin’.

We made this a two-day process but you could separate it by several hours. Each child chose a toy and a jar. Using masking tape we marked his/her name on both lid and jar (it’s important they stay matched) and I glued the child’s toy onto the lid. We put them on a level surface to dry. Two days later, each kid found his/her lid and jar, and filled the jar almost to the top with water.

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The best part, I think, is the glitter. I have a bin full, so I let each child pick three colors (you could use as many as you want) and I sprinkled them into the water. I know some tutorials tell you to use a certain kind of glitter that won’t clump, but really, as long as you aren’t about perfection, any kind will do. The multi-color thing is pretty awesome, too. It personalizes the globes and the kids loved it.

Very carefully screw the lid on. Again, I did this myself. Once you are certain it’s on tight (we had a couple small catastrophes) flip it over and — voila! Snow globe magic.

Warning: Depending on the toy and glitter, your toy might initially get covered in glitter. I think that looks pretty cool, and a few hard shakes will set things right.

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Enjoy!

A few days after the project, a friend mentioned that she was picking her daughter up at school and saw a boy — a big boy, there are a few future football players in the fifth grade — showing his own mom his snow globe. He was really excited.

My heart melted.

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Party Hat

Nerd Alert

posted Tuesday December 17th, 2013

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Over the years, I’ve written a bit about Sophie’s fashion choices. Namely that I want to be the one making them — that a kid with Down syndrome has enough challenges without a tacky outfit (or a top hat, or overalls, or a sailor suit, or — okay, I’ll stop).

See also: Thoughts on Overalls

But lately I’ve caved. I admit that mostly that’s because she wears me out but also because I think Sophie should be able to express herself through what she wears. It’s important to her. Because she never grows (only a slight exaggeration) the kid has more clothes than anyone I know (as the smallest, she gets all the hand me downs) and she likes to wear them. Sometimes two or three outfits a day. It’s hard to keep up — so sometimes, I let it go, let her risk a goofy outfit.

Like this morning. I was getting ready myself and challenged Sophie to be dressed by the time I got out of the shower. For once, she was into the idea. First she brought me her choice for shoes: a pair of Toms espadrilles. Well, sort of a pair. Two shoes from different pairs.

I stared hard at the shoes, looked at Sophie’s excited face, and made a decision.

“I love it!” I told her. “You know, Sophie, I wouldn’t have thought to do that but it looks adorable. Go for it.”

She beamed. And greeted me a few minutes later, clothed head to toe. Again, her choices were a little more out there than usual — shorts (forecast is 78 today), mismatched striped socks with the Toms, a knit scarf around her neck, a lace top over a striped tee.  Cute. Well, sort of.

“Hey Mommy, will you put tape around my glasses?” Sophie asked, holding them out.

Then I remembered, finally. Today is Nerd Day, Day 2 of Spirit Week at school.

Suddenly, it all made sense. And I couldn’t have been prouder of Sophie’s style.

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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
Changing Hands Bookstore
. For information about readings and other events, click here.
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