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Party Hat

 

 

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Dear Dax:

More than anything, this is a piece of fan mail. I hope you consider it as such. I know it probably won’t make its way to you, but social media is so weird and connective that I guess there’s a chance it will. I hope it does.

I love your podcast, Armchair Expert.

Like, I really love it. (Yes, Amy, you and the rest of America.) I love that it’s obnoxiously long, I love that it goes off topic even before it goes on topic. I love that you were an Anthropology major and clearly smarter than I am. I was an American Studies major, which is like anthropology but easier and I bet you had to take math. I did not. I love that you had Ira Glass on your show and that you admitted to him that when he complimented your movie Hit and Run (which I have not seen and I mention this only as evidence that I am not your stalker, which by now you might be worrying about) it was like the best thing that had ever happened to you because I once got a compliment from Ira Glass and felt the same way and think about it more than is healthy. I love that you talk about shitting your pants. I love that you talk about words and writing and my favorite thing is your fact checking segment at the end of each episode. Fucking brilliant.

I use the word fuck a lot. So much that I’m now that person whose friends buy her stuff with bad words on it — like the plate from a college friends that says “Bullshit” and a needlepoint pillow that says “I Love Bad Bitches” from a writer friend. This Christmas some former co-workers at the newspaper where I worked for 25 years gave me a banner that says, “Do No Harm, Take No Shit” and I took that as a compliment, but I also had to ask myself, “Do you want to be the person who people give that kind of shit to?”

I’m not sure. To be honest, I prefer the Nora Ephron quote my older daughter needlepointed for me last Mother’s Day. It says, “Be the heroine of your own story, not the victim.”

We all veer toward victimhood, but in my case it’s a real challenge because my younger daughter has Down syndrome.

 

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Sophie is 15. Pretty much overnight, I went from being the asshole staff writer at the alternative newsweekly who complimented her boss when he called state legislators “mouth breathers” to being that annoying mom who interrupts conversations at other tables at restaurants when she overhears someone use the word retarded.

Yes, I’m an advocate. I mean, I’ve never called myself that, but I guess you would.

And I know you’ve produced many episodes since last year’s conversation with David Sedaris so this stuff isn’t on your mind, but that’s the episode I heard this morning and it’s the one that’s got me thinking a lot. Even Sedaris seemed uncomfortable when you announced that it wasn’t fair for a parent of a kid with a disability to complain about a comedian using the word retarded, and I cringed when you almost spit out the word “advocate.” Like it was a curse word.

But I kept listening, holding my breath, hoping that this would be a point of discussion in the fact checking segment. It was. And I was glad. Monica (like you) is brilliant and such a good foil — and both of you made good observations. You really made me think, and I already think a lot about why I care about anyone using the word retarded, or other language, for that matter, when my husband and I are both journalists and pretty big First Amendment fans. But neither you nor Monica got to what I really think about when I think about why I ask people to not use the word retarded.

Look, first of all, I get it. I get that we are all drowning in the waves of political correctness. It’s horrible. I can’t say or write a thing without worrying about the thought police. Before Sophie was born, I was considering trying to bring back the word gay (like, really). After she was born, I couldn’t watch Gray’s Anatomy because Sophie had to have open heart surgery and suddenly I could recognize all those words the fake doctors were shouting over the fake patients. I hid in the bathroom and read Augusten Burroughs’ essays till I landed on one where he takes home a guy and fucks him and wakes up the next day and realizes the guy has Down syndrome.

It’s gotten better in the last 15 years, and I do worry about just what you touched on in that Sedaris episode, that I have no business speaking or trying to speak for my daughter. She’s her own person. She can tell you she doesn’t want you to call her retarded.

And she might. Sophie’s pretty fully self-actualized, even with a diminished IQ. I have no doubt that you and she would be fast friends. But let’s face it, most people with intellectual disabilities (a term I hate, I can’t find one I like) can’t tell you they don’t want to be called retarded, because they don’t understand what it means.

Does that mean we should call them whatever names we like, because they can’t tell us not to? What if black/African American people/people of color literally, physically, existentially, couldn’t object to being called niggers? Would we let it rip?

Monica mentioned how hard it is for parents of people with disabilities. It is. I don’t want to sound like a victim (see above) but some days my life really fucking sucks. But it’s so much more than that. I am willing to bet that I love my daughters as much as you do, that they bring me as much joy as yours do to you.

All of that said, I’d like to have back the two hours I spent waiting in line to see the fake Elsa and Anna at Disneyland a couple years ago. But I will not hold that against your lovely wife.

Thanks for making “advocate” my new favorite curse word. If you made it this far, thanks for reading. I’m going to keep listening. Next on my list is the episode with your mom.

Your Fan, Amy

PS Here’s the piece I did for This American Life, and one for Lenny Letter (Lena Dunham’s late, great newsletter). And here’s the style guide for the National Center on Disability and Journalism, which I edited.


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Party Hat

There’s No Such Thing as a Christmas Brisket

posted Friday December 21st, 2018

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Editor’s Note: I read this essay at the December 20, 2o18 Bar Flies at The Van Buren in Phoenix. The theme: Eating Christmas.

So, here’s the thing no one really ever tells you about Christmas.

It gets harder as you get older.

This occurred to me last week, when my daughter Sophie ran sobbing to her room at the news that we were going to purchase a Christmas tree that evening.

She’s terrified that Santa Claus is going to come into her bedroom.

Whoever came up with

He sees you when you’re sleeping

He knows when you’re awake

Is an asshole.

I looked it up. His name was Haven Gillespie and he wrote the lyrics to the 1934 smash hit, Santa Claus Is Comin’ To Town. Gillespie died in 1975. According to Wikipedia, he drank heavily for most of his life – something I plan to do, at least until New Year’s.

Christmas is hard. I am old.

Sophie’s old, too. For a Santa believer, anyway. She’s 15 and a half. Sophie has Down syndrome, so it takes her longer to figure some things out.

Santa is one of those things. In between bouts of terror, she loves to believe – she writes Santa letters asking about Mrs. Claus, asking how their Thanksgiving was, asking if Santa knows she has Down syndrome.
This year she removed “bras” from her Christmas wish list. “That’s not appropriate to ask Santa for,” she told me solemnly.

She checks several times a day to see if the response to her letter has arrived.

I realize that I’m a shitty parent for not having clued her in, but really, which one of you wants to be the one to break the news to Sophie?

That’s what I thought.

My wise friend Jennifer has it right.

“Christmas is really at its peak when you’re 3 or 4 years old,” she told me. The rest is downhill.

I think that’s true – for most people. Me, I peaked late.

Growing up Jewish, I never got the chance to believe in Santa. My sister and I got blue and white stockings with a pack of Carefree gum in the toe. There was nothing magical about it. Don’t feel sorry for me – I was hardly deprived – but I always longed for the opportunity to really celebrate Christmas.

I finally got my chance at 27, when I started dating my now-husband, Ray.

Ray’s family was not religious. His mother put the kids in Catholic school when they were little, but it didn’t stick, probably because Ray’s father is a devout atheist.

But I think that man loved Christmas more than anyone. Every year on Christmas Day, he pulled out this faded old velvet smoking jacket and put it on over his undershirt and wore it all day. Ray’s family never left the house on Christmas. Everything was beautifully orchestrated, carefully planned over weeks (maybe months), down to the bowl of red and green M&Ms on the plastic poinsettia tablecloth in the modest Tempe tract home the family purchased in the 1970s, shortly after moving here from Queens.

Ray’s father had retired early from the New York City fire department. He loved being a fireman but the smoke inhalation got him. Ray’s mom found a job doing data entry at the Mesa Police Department. They took Ray and his sister on long summer road trips to national parks till the kids were too old. So far, no one had gotten too old for Christmas.

I immediately accepted an invitation to that first Christmas at Ray’s house – and never looked back. His mom puffy-painted my name on a felt stocking that she hung next to the one she’d needlepointed for Ray when he was a baby. Each year I brought her an ornament for the tree, which she would carefully store with the rest and proudly hang the following Christmas.

We’d arrive early on Christmas morning, sit down to coffee and homemade Irish soda bread (one loaf with raisins, the other without, because Ray hates raisins in his Irish soda bread) and enjoy the spectacle of the lit tree and the stacks of gifts, then take turns opening until there was a giant pile of tissue and boxes, just like in the movies!

Ray, his sister and I would watch TV and nap while their parents bustled for hours in the small kitchen. Ray’s dad always made mashed potatoes from scratch, and together they roasted a turkey, microwaved vegetables, and prepared an elaborate family recipe for stuffing that involves boiling sausage and mixing it with loaves of Wonder bread that have been left out for days.

Ray’s mom would swap the plastic tablecloth for a real one and put out her good dishes.

She made the whole thing look effortless. Every year, I would ask her, “How do you do it? How do you make it so every dish is ready at the same time?”

“Practice,” she would tell me, hiding a proud smile. “Years of practice.”

Then she’d slip into the kitchen to make hot tea, serving it with the cookies I’d baked and mentioning that she was hiding one of my pink iced stars to have the next morning with her coffee. As we scooped up piles of gifts to take home, Ray’s dad would sigh, dejected. He hated it when Christmas was over, he’d tell us.

I totally related.

Ray and I got engaged, then married, then we had a baby, then another baby. His mom added stockings by the fireplace, and the mounds of tissue paper grew. But really, nothing about Christmas ever changed, which is exactly the way I liked it.

And then everything changed.

Just after the holidays one year, Ray’s mom began complaining that her throat hurt. She never complained. By spring, the diagnosis was lung cancer. We celebrated one last Christmas in 2008, and by the next February, she was gone.

I wasn’t completely surprised when, the following summer, Christmas arrived on our doorstep in the form of several Rubbermaid bins. Ray’s dad had left nothing out – he included the stockings, the hooked rug tree skirt, every ornament.

Suddenly, Ray and I were the adults. Over the years, we’ve developed some pretty good holiday traditions – every Christmas Eve we take our daughters out to look at lights. We get home late and the girls go to sleep and Ray and I stay up and drink Bailey’s and wrap gifts, shooing poor Sophie away every time she emerges, worried about Santa watching her sleep.

Christmas morning, I serve homemade Irish soda bread (one loaf with raisins, one without) and I always put out a bowl of red and green M&Ms.

It’s all good. Until it’s time to make Christmas dinner.

We have to have poultry because that’s what goes best with the centerpiece of the meal, the stuffing – that family recipe that involves the aging of white bread and the use of pretty much every utensil in the kitchen. It’s become tradition that Ray makes the stuffing, and he attacks the task with equal parts precision and abandon, which means that he’s inconsolable if the bread isn’t quite stale enough, and also that the kitchen walls wind up covered in onion.

Things aren’t as pretty on my side of the kitchen. The first Christmas dinner we hosted, I made a traditional turkey and we didn’t eat till it was past everyone’s bedtime. The next year I made a turkey breast, which dried up like jerky and tasted like sawdust. Cornish game hens were a big pain in the ass (and a little creepy) and the spatchcocked turkey wouldn’t stay in the largest roasting pan I could find. Parts kept popping out of the pan; that turkey looked like a naked lady with her legs splayed.

I’m not much better at sides, and I’ve never attempted mashed potatoes. But Ray’s stuffing is always delicious, a point of pride.

My father in law hasn’t tried it in years. A couple Christmases after my mother in law died, Ray’s dad stopped coming over. He’s got a girlfriend, now, and they always schedule a trip over the holidays. I wish Ray’s dad would partake in our new traditions, if only for his granddaughters. I want to be mad at him, and then I picture my father in law in his velvet smoking jacket, standing in the doorway as we drive away, sad because Christmas is over.

Last year I decided that it doesn’t really matter what I cook for Christmas dinner. I made my grandmother’s Jewish brisket, the only main dish I can prepare with any degree of certainty of success. Everyone raved, but the truth was that it was a little gross, meaty and greasy next to the sausage stuffing. It didn’t feel right. It wasn’t Christmas-y. The truth is, I wasn’t Christmas-y. I’m just an imposter, I thought. What’s the point?

There’s no such thing as Christmas brisket.

“What if we order in Chinese this year?” I asked Ray last month. “You know, ditch Christmas dinner and make things a little easier on ourselves?”

“Okay,” he said. “That sounds good. But I’ll still make the sausage stuffing, right?

“And can you get some of those Cornish game hens?”

Despite Sophie’s protests, Ray went out and bought a tree, and at some point the four of us will honor another tradition – and decorate it. I’ll open the boxes with my mother in law’s ornaments – delicate glass balls, the popsicle figures Ray made in grade school, the snapshot of his family dog sitting on Santa’s lap and several tiny framed pictures of our girls.

My favorite ornament is a Santa carved from wood, painted in bright colors and shaped like a star. On the side, in my mother in law’s handwriting, it says “Amy, 1995.”

Tonight I’ll stop at the grocery store on my way home and buy the Wonder bread – so there’s plenty of time for it to get good and stale before Christmas. And I’ll see if the butcher has Cornish game hens. I might even try to make mashed potatoes.

We can order Chinese another night.


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Party Hat

Overalls

posted Tuesday October 30th, 2018

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I finally bought my kid some overalls last week. It was time. And not because it was Halloween, although that was her excuse – this time.

Sophie’s been asking for overalls for years, and for years I’ve been changing the subject. That’s not to say this isn’t a kid who gets what she wants, particularly when it comes to clothing. No fewer than five dresses were purchased in anticipation of a recent Homecoming dance; in fact, my teenaged daughter has so many clothes that some days I can barely see her bedroom floor.

And for the most part, she wears what she wants; she’s learned the hard way that Birkenstocks are a lot more comfortable than high-heeled wedges. It works.

But some habits die hard.

It’s been more than 15 years, but I can still remember exactly what it felt like to hear for the first time that my younger daughter had Down syndrome – something I’d only read about in books, or viewed from the safe distance of the other end of the supermarket check-out aisle.

It felt like I was falling. In those first hazy days, it was as though I’d been slung-shot into space – somersaulting, flailing about for something to hang onto.

Something like a bow tie.

I don’t know where it came from, but in my head was the vision of a person with an intellectual disability, wearing a bow tie. Later I added a top hat. And thus was born the Down syndrome Dress Code.

Okay, so the baby, my baby, had this thing. But she didn’t have to fit any of the stereotypes of a person with an intellectual disability (at the time, I – and pretty much everyone else – still used the word retarded). Sophie would be her own person, with her own sense of style. She’d wear only the cutest clothes, like her older sister Annabelle. No bow ties, no top hats. Nothing that reminded me – or the world – that she was different.

At first, it was easy. Babies don’t have much of an opinion on what they wear, and when no other adults were home I’d cram the ugly onesies we’d been gifted — the ones that said things like “Mama’s Lil’ Darlin’” — into a bag for Goodwill and hide them in the trunk of my car for later disposal.

When Sophie had open heart surgery at four months, I hunted for the softest, prettiest onesies that snapped up the front.

When she needed orthotics to learn to walk, I found hot pink Converse that fit over them, instead of the loser leather shoes the doctor recommended.

And then came the overalls. They were in the bottom of a bag of hand-me-downs from a friend, pink velour Circos, Target’s finest, size 24 months. I hid them in the closet, not knowing why I had such a visceral response. It was a long time before I realized the trigger: the character Lennie Small in the movie “Of Mice and Men.”

No daughter of mine, particularly not a “retarded” one, was going to wear overalls. Not even pink ones.

When Sophie was 10, she found those overalls in the back of the closet and tried to put them on. They were way too small, even for her tiny frame. I grabbed them off the kitchen floor and stuffed them away again.

A handful of times over the years – almost as though she could read my mind — Sophie asked for overalls. I’d distract her with a dress or some leggings.

Fast forward to this fall.

It’s Annabelle’s senior year of high school, mostly likely her last Halloween at home, so we’ve decided to dress up as a family, as characters from Winnie the Pooh. My husband Ray is Tigger, I’m Eeyore, Annabelle will be Christopher Robin, and Sophie will be her all-time favorite character, Piglet.

After some Googling, Annabelle is on the hunt for a yellow polo shirt and blue shorts. I got on Amazon and ordered ears for the rest of us. That was easy.

Too easy.

“Hey what are you doing?” Sophie asked as I closed my laptop. I told her.

“I need pink overalls,” she announced. “For my Piglet costume.”

She had a vision of black stripes on pink. I told her she was wrong, that Piglet wore hot and light pink stripes. We looked it up and Sophie was right. She’s pretty much always right.

“Are you sure you want them?” I asked. “I mean, technically, Piglet doesn’t wear overalls.”

“I’m sure,” she said.

She kind of had me. She knows how much I love Halloween. And she really wanted those overalls. I hemmed and hawed for a couple of days, finally consulting with an old friend.

“It’s time,” my friend said gently.

And it was. I don’t see Down syndrome when I look at Sophie. I don’t see Lenny from “Of Mice and Men” or a grocery clerk in a bow tie. I see a creative, rambunctious, smart, pushy young woman who is a combination of Ray and me and a little extra genetic material.

There is no one else in the world quite like Sophie, no matter what she wears.

I ordered the overalls.

She squealed when she saw them, rushing to her bedroom to try them on. They didn’t fit, not even close. Sophie tugged on the snaps. One of the silver fasteners popped off.

“Don’t worry, I’ll order another size!” I said quickly. “No big deal. We still have time before Halloween.”

Sophie wriggled out of the pink fabric, ditching the overalls – and perhaps the idea of overalls forever — on the kitchen floor.

“No,” she said. “Don’t order more. I think I’ll be Steampunk Piglet instead!”

I grabbed my phone and searched, pulling up an image of Piglet in a long coat – and a top hat.

“Okay!” I said, swallowing a gulp. “Let’s do this.”

 


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Party Hat

This Is Not A Test

posted Wednesday October 24th, 2018

 

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This morning, Sophie’s high school classmates are taking the PSAT. Sophie is home, sleeping in.

When she gets up, she’ll do math homework, get her bangs trimmed, watch some YouTube videos. Later in the day, she’ll go to ballet class.

I’ve never let her miss a test before. For 15 years, this kid has been expected — pretty much — to do what her peers do. Until today.

It’s particularly weird, letting Sophie skip, considering that her older sister Annabelle is currently steeped in tests, essays, portfolios and everything else related to a four-year college experience.

Sophie will continue her studies after high school, but she will not be pursuing a four-year college experience. She has already announced that she’ll be attending community college. I love this idea. All over the country, university programs are popping up that are specifically designed for students with intellectual disabilities — except at the nation’s largest university, Arizona State, the one that happens to be located two blocks from my house. That’s okay. From what I’ve heard, some of these programs are very good and others are feel-good money sucks.

We’ll stick with community college for Sophie. There’s no need to take the PSAT or the SAT. And so when she asked to skip today’s test, I hemmed and hawed (and consulted with her lawyer, my mom, the special ed director at the school and several other parents of kids with Down syndrome) and ultimately let her stay home.

The truth is that standardized tests have never really been my thing.

“You could let her go and take it and fill the bubbles out so they make daisy shapes like you used to do,” my mom said. Point taken.

So Sophie stayed home. She rubbed her sister’s nose in it last night, and I’m sure Annabelle was a little bummed to be the only kid getting up so early this morning, but the truth is that Sophie’s the one getting the bum rap. The world wasn’t designed for the Sophies. She’ll find her way, but it won’t be easy. And we might as well start preparing now for the off-trail path.

In tiny ways, I can feel Sophie getting ready for her life. The other night, she went to her school’s homecoming dance with Annabelle and one of their best friends. Sophie planned for weeks, purchasing multiple dresses, planning the evening down to the minute, alternately vamping and nagging throughout the afternoon of the dance till I couldn’t take it anymore.

She asked that our friend Rachel curl her hair, and had Annabelle apply her eyeliner. When she was all ready she looked in the mirror and sighed happily, then said something that surprised me.

“I look like Christina!”

“Who?” Rachel asked, but I knew immediately. Sophie was talking about “Born This Way,” a reality show that follows the lives of several adults with Down syndrome, including Christina, who got married on a recent episode.

I was surprised, because Sophie doesn’t tend to identify with other people with Down syndrome. I was thrilled, too. Every day, Sophie gets older and every day she drifts a little more from her typical peers. She will not grow past 4’5″ and in many non-concrete ways she isn’t keeping up, either.

And yet Sophie is so wise, kind, funny, insightful — all the things I see in Annabelle, the things I always hoped for my daughters to be. Like Annabelle, Sophie is also unique. But she does share this genetic situation with a tribe she (mostly) hasn’t met and I looked in the mirror that night and saw what she was talking about, the same small stature, the almond-shaped eyes, the straight hair. Very different from Christina, and also so similar.

That will be Sophie’s lot in life. Not her whole lot, to be sure, but part of it, and I see her embracing it in small but meaningful ways. I want her to be okay with it — the way I want Annabelle to be okay with the colleges that accept her and the ones that don’t and with a million other things that will come at her.

I wonder if Sophie knows what skipping the PSAT means, aside from a day off school. I think she probably does. I’m not going to ask.

 


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Party Hat

Clapping My Hand Over My Own Mouth

posted Friday October 19th, 2018

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Fall is here, but I’m still thinking about my summer gig.

I spent the hot months of the year with my nose in the dictionary — rifling through medical journals, Googling the history of words, jotting down notes.

And clapping my hand over my own mouth several times a day.

I’ve been a journalist for nearly 30 years and the mother of a child with Down syndrome for 15, so in a lot of ways the assignment to update the style guide for the National Center on Disability and Journalism put me in my sweet spot.

And yet, by the end of the summer, I found myself souring on words in general, barely able to get a sentence out for fear of saying something offensive.

It wasn’t the first time. After my daughter Sophie was born I had a lot to think about, including my own vocabulary. I’d spent pretty much my entire adult life in newsrooms. Journalists – at least, the ones I’ve hung around – are not known for politically correct language. I once complimented my boss on a column in which he wrote off state lawmakers as “mouth breathers.” But after Sophie was born, I was the one asking another writer to stop using the word retarded in staff meetings.

He refused.

I told him to fuck off, but the truth is that I understood. Freedom of speech is the hallmark of the trade, our constitutional right. It’s all that matters, right?

Not really, as it turns out. I went home and watched my baby breath. Out of her mouth. I felt sick.

For years, I worked with a really nice guy who wore a baseball cap stitched with “lamebrain” in big letters. Tee shirts, too. It turns out he and some friends own a skateboard/clothing line. That’s the name of the company, lamebrain. Every time I passed him in the hall, I’d picture Sophie and wince.

By then, most people had stopped using the word retarded around me. But as I learned when I thought hard about what it actually means to have a “lame” brain, or looked up the IQ points originally assigned to the terms imbecile and idiot, or struggled with the correct terminology to describe a friend who uses a wheelchair, it’s about more than the “r-word,” just as the discussion of ethnicity and language reaches far past the “n-word.”

And so when I was invited to join the board of directors of the National Center on Disability and Journalism, I accepted, even though I’d always refused membership in any organization on the grounds that it might affect my objectivity as a journalist.

Who was I fooling? There was no way I could be objective on this topic.

Then came the assignment to edit the style guide, which includes hundreds of terms both acceptable and not. Again, I paused. I thought about Kristin Gilger. Gilger is the director of the NCDJ and senior associate dean at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University, where the organization is housed. She’s also a badass journalist and the one who gave me this assignment.

As I’ve heard Gilger say more than once, the idea behind the style guide isn’t to be the language police, but instead to give journalists suggestions that will give their work more impact. I thought of how many times I had avoided covering disability-related issues over the years for fear of writing the wrong thing, much as I was afraid to reach out to shake the hand of a man with quadriplegia, for fear of embarrassing myself by putting us both in an awkward situation.

I wasn’t sure where to begin, so I started with A – for “able-bodied,” a term that sounds okay but, as it turns out, is often considered insulting. I got stuck in the Ds; for a while, “differently-abled” seemed better to me than “disabled.” After all, “dis” means “not.” Why would someone want to be called “not abled” when “different” sounds so much better?

Turns out, it sounds better to me. But not to a lot of people who feel that “different” is condescending, while “disabled” is honest.

I had a lot to learn. I took NCDJ’s advice and asked people with disabilities how they’d like to be referred to, and when there was disagreement, I said so in the entry on that particular word. There’s a movement to reclaim “cripple,” but not by everyone. Generally speaking, “people-first” language is preferred these days. My daughter is a “girl with Down syndrome” — don’t call her “Down syndrome girl.” But there are some in the autism community who find people-first language offensive. Please, call them autistics.

I spent the summer thinking about disability in dozens of ways I never had, as I ticked through each term in the style guide, parsing different terms for hearing impairment, hearing loss, people who are hard of hearing. I re-read Elizabeth McCracken’s excellent “The Giant’s House,” a novel about an eight-foot tall man in a small town in the 1950s who is invited to join the circus, and flipped back to the F’s to add the word freak.

Several times a day, I caught myself and others using language that used to seem just fine.

“Don’t be an idiot.”

“He seems kind of spectrum-y.”

“That’s crazy.”

Words haunted my dreams. I woke up in the middle of the night wondering, had we included Asperger’s in the guide? Was “albino” ever acceptable, or is it always albinism? (It’s always albinism, I was told by several sources.) I followed every word-related debate I could find on Twitter.

Finally, I got to W for wheelchair user (never wheelchair-bound). Summer ended and I turned in the guide, but I’ve continued to worry. What did I leave out? Will we offend someone? After several rounds of edits the guide went live on NCDJ’s web site this week, so I guess we’ll find out soon.

As for me, I know I still have a lot more to learn. For the most part, I’ve grown accustomed to my internal editor, the one that leaves me searching for words better than stupid. So far, I say “ridiculous” a lot.

And yes, the 2018 update of the National Center on Disability and Journalism Style Guide includes an entry on the term lamebrain. We don’t recommend using it.


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Party Hat

Sophie Didn’t Forget

posted Wednesday September 26th, 2018

 

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Not long after Ray dropped Sophie off at school yesterday morning, I got a text from my friend Elizabeth. Her daughter and Sophie attend the same high school. The text included an image of an exchange Elizabeth had just had with her daughter:

Mom, there’s apparently this thing going around social media that someone is going to shoot up the school at 9:30….I think this is serious, the teachers are even talking about it. I don’t know what to do. Some people are already leaving. 

Elizabeth texted that she was on her way, and then she texted me. Did I want her to get Sophie?

I did. I picked up my phone to text Sophie to tell her and suddenly, I was filled with panic.

Last year, Sophie’s team decided she should leave her phone at home because she has trouble putting it away during class. Nothing was working, I was told, and finally I agreed. This has been on my list of things to discuss at a team meeting at the end of the week — it’s made me uncomfortable, that the rules are different for the kid with Down syndrome when pretty much every kid I know (including the students in the college classes I’m teaching) has trouble putting the phone away.

While all the other kids were texting their parents, Sophie was not. A few minutes went by, and my phone rang. It was not a familiar number. But it was Sophie. She’d found a phone. I asked her to put her teacher on. She did — she was in drama class.

“Is she okay?” I asked the drama teacher.

“She is,” he said. “She’s always calm with me.”

I know how much Sophie adores this guy — she talks about him constantly — and I could hear from his voice that the feeling is mutual. He didn’t want to tell me what to do but he did tell me there were 19 kids in class when the period started and now there were 10. Of course he’d have someone walk Sophie to the office to meet Elizabeth, he said.

I love our village.

Sophie spent the day with Elizabeth. When we spoke, she didn’t want to talk about what had happened at school. She was too excited about the fact that Elizabeth had cranberry juice at her house. They watched Shrek and played cards. Sophie’s nanny, Sarah, picked her up and they headed home to do school work.

The calls and emails from the school district came in all day. The threat was not credible. It’s a crime to make threats on social media. The police have it under control.

I wished for metal detectors. My mom called and wondered if maybe we should get Sophie a bulletproof backpack.

As it turns out, these threats have been coming in all over town, about different schools. Honestly, I’m surprised that kind of thing doesn’t happen more often. Can you imagine the charge that person got out of watching hundreds of parents drop everything and rush to pick up their kids? That’s a lot of power.

And then there’s the power the day had over Sophie. Late in the afternoon she texted me an image from SnapChat that said kids weren’t allowed to bring back packs to school. I emailed Sarah, asking if Sophie was worried.

“She keeps saying her friend got shot in the back and is in a wheelchair now,” Sarah wrote.

Sophie must be confused, I thought. No one was shot today. In fact, I don’t know of any kids at her school who –  and then suddenly, my eyes stung.

“What’s her friend’s name?” I wrote back, even though I knew what the response would be.

Sophie’s friend is Jennifer Longdon. She’s not her classmate, she’s a grown woman, and Sophie is right. Jennifer was shot in the back and she uses a wheelchair. I wrote a story about Jennifer and afterward, we became friends. We’ve eaten beignets on birthdays, Jennifer has come to the girls’ dance performances, and one Easter Sunday, several years ago, Sophie stood in Jennifer’s living room and stared hard, then asked her, “Why are you in that wheelchair?” Jen told her.

Sophie didn’t forget.

I love our village.

My phone rang. It was Sophie.

“Jennifer Longdon got shot in the back and I don’t want anyone to bring a gun to school,” she said.

I thought of how annoyed the staff at the high school would be when I send Sophie to school with her phone. I thought about whether or not to tell Jennifer what Sophie had said. I thought about how completely fucked up the world is.

“No one is going to bring a gun to school,” I told Sophie, although I’m not so sure I believe that myself.

Does anyone know where I can buy a metal detector?

 


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Party Hat

The Last First Day

posted Tuesday August 14th, 2018

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I couldn’t fall asleep last night. That’s unusual. Most nights I crash hard, then I’m up at 2, 3, 4, 5, finally really sleeping when the alarm goes off at 6. But last night I was prowling the house at midnight, looking for a photo from Annabelle’s first day of kindergarten.

Twelve years ago, I didn’t have an iPhone or even a digital camera. And I thought scrapbooking was for pussies. Which is why I’ve ended up with a half dozen Rubbermaid bins stuffed with photos, everything shoved in till the lid is about to pop, nothing in any sort of order. It’s on my “to do” list — organize photos. We’ll see.

I blew dust off  lids, pawing through several of the bins. I found photos from my wedding, from Annabelle’s third birthday and Sophie’s first, from dance performances and the beach and eighth grade. The closest I got to the first day of kindergarten is a class picture I’m fairly certain (judging by dental conditions — no missing teeth yet) was taken during Annabelle’s kindergarten year.

Suddenly I was envious of those moms with their tiny chalkboards that so perkily announce, “First Day of Seventh Grade!”

“I made you a bagel,” I announced to the door of Annabelle’s bedroom this morning.

“Can I have coffee?” she asked. She didn’t sleep either.

I made extra coffee and packed her lunch, a turkey sandwich with mustard, a plum, popcorn and teeny tiny chocolate chip cookies from Trader Joe’s. I tucked a note inside, telling her how proud we are of her, and signed it from everyone in the house, including the dogs and cat, torturing myself with the reminder that I wouldn’t be doing this next year.

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It’s not like I didn’t know this day was coming. We’ve spent the summer looking at colleges and talking about essays. The other day Annabelle reminded me that she got upset in eighth grade, when she realized she was getting old. She’s always been old, her soul came out that way. She is goofy and sweet and pensive and awesome.

And she is leaving. Not today, not tomorrow, and never for good, not in the ways that really matter, I know that, but someday. Someday soon. Sophie has already announced her plan to turn Annabelle’s room into her office. We laugh about it, even though I don’t find it funny at all.

I don’t scrapbook or file photos, and I don’t journal. But sometimes I send myself typo-filled emails with notes, things I want to remember. And last night I found this one, sent the day after Annabelle’s first day of kindergarten. I read it and smiled, gave up on the photo hunt, and tried to get some sleep.

From: Amy Silverman <amy_silverman@yahoo.com>
Date: August 8, 2006 at 9:08:32 PM MST
To: amy silverman <amy_silverman@yahoo.com>
Subject: annabelle’s first day of kindergarten

i did an inventory, that morning. most prominent freckle, just under her left eye. boo boos: yellowing bruise on her forehead, scrape on her ankle, skinned knee and elbow — unsual for her, all sustained in san francisco. new cherokee denim dress she chose herself from target. everything from target: brown/pink shoes with rhinestones, white bobby socks, hello kitto rainbow underwear. tinkerbell backpack, flowered lunch box like ciarra’s, she said when she picked it out. lunch: pb&j cut into a heart, juice box, even a day later i can’t remember the rest — grapes? lorna doones. goldfish crackers. a small pkg of gummies she didn’t touch. a note that didn’t make it home: dear annabelle, happy first day of school, love mommy and daddy, with mermaid stickers. she didn’t cry. i did, but just barely. by 9 am, it was 100 degrees.

 

 


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Party Hat

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So there’s this Facebook status update that’s been rattling around in my head for weeks now. I’ve been afraid to actually write it down because I don’t want to jinx it. But – what the hell.

It goes something like this:

For as long as I can remember, pretty much since she’s been able to express an opinion, my younger daughter Sophie has refused to allow me to sing or dance. And then the other day — out of the blue, with no explanation — she announced that she’s lifting the ban. I can sing and dance whenever I want. 

Happiest fucking day of my life. 

Okay, before we go any further with this there’s something you need to know. I have a terrible voice. Like, the worst. Epic-ly bad. Seriously. I know what you’re thinking, you’re thinking, oh, it can’t be that bad.

Oh, but it is. Whatever you’re imagining, it’s worse.

And yet, I love to sing. It’s one of my greatest joys in life. Almost twenty five years ago, I dated a boy who played me Beatles songs on his guitar, and encouraged me to sing. He told me he loved my voice and I fell in love with him.

I know they say love is blind, but in this case it’s deaf. We’ve been married for 20 years.

Don’t worry, I don’t sing in public. But the shower? The kitchen? The car? Let the concert begin.

Unless Sophie’s within earshot.

Look, I get it. I have very distinct and painful memories of my own mother tuning into KOY radio on the Volvo station wagon and belting out the greatest hits of 1977. Sadly, I get my voice from her. And Sophie gets her honesty from me. I had no problem telling my mother in no uncertain terms to stop singing.

But it wasn’t the same. Nothing about Sophie is the same, thanks to an extra 21st chromosome that makes each of her cells act a little differently than each of mine. Or yours. One of the most common stereotypes about Down syndrome is that people with it are kind and loving. And that’s true. Sophie is a total sweetheart – until she isn’t. Then she has no filter. If you do something that annoys her, watch out. She’s gonna tell you. And keep telling you, until you stop.

Until very recently, it was not unusual for Sophie to yell, shriek, hit me, or even burst into hysterics at so much as the first few bars of Happy Birthday or a couple lines from a Christmas carol. God forbid I throw an impromptu dance party in the kitchen.

She wouldn’t even let me lip sync.

Part of me appreciates Sophie’s honesty. I’m grateful she can stand up for herself. And I realize that some of this is about control. There aren’t many times in Sophie’s life that she gets to be in charge.

But every time I opened my mouth and she shut me down, it cut a little deeper, because I couldn’t help but wonder — is this what the rest of my life is going to be like? Will I never get to belt out Landslide in the bathtub, or race down the 51, screaming my heart out with the Ramones?

When I yelled at my mom to stop singing along to the radio, she didn’t like it, but she knew it wasn’t forever. One day soon, I wouldn’t need a ride anymore. I’d be driving myself places, and not long after that, I’d move out of the house and go to college. She’d be a little lonely, but the car would once again be her concert hall.

It’s not that way with Sophie and me. Sophie has every intention of shacking up in our house – preferably in my bed, smack dab between her father and me – forever. For as much as she hates my voice, she loves the rest of me, and has a dozen rituals to prove it. She kisses me on the lips first thing in the morning, and at night waits so we can put our pajamas on together. She rubs lotion on my back and tells me how much she loves me.

And I love her back, more than I ever thought I could love another person. I can imagine living with Sophie for the rest of my life. That’s not to say it would be without complications. I treasure my alone time, something I didn’t really realize til I had a tiny person at my elbow constantly — asking who I’m texting, what’s for dinner, what are we doing tomorrow, next week, next month, next year and could we please watch one more episode of “Say Yes to the Dress?”

But I can deal with all of that. As long as I can sing and dance.

I don’t know what did it. Her sister, her father, her friends, my friends – for YEARS, people begged her to let up. I tested her constantly. Pretty much every morning from pre-school to freshman year, the drive to school ended in a fight because I dared to attempt a couple of Taylor Swift lyrics or the chorus of an Avett Brothers song.

Sophie was 100 percent committed to her decision to never allow me to sing  – until the day she wasn’t.

We were driving to ballet class. I don’t recall what song was on the radio, or what we were discussing, I just remember Sophie saying, very softly, “Mom, you can sing and dance whenever you want, from now on.”

I didn’t say anything. A few minutes later, I tested her and sang a couple lines. She didn’t protest. Every day after that, I waited for the ban to be reinstated. It wasn’t. The other day I even overheard her tell my mom that this year at Thanksgiving, she wants her dad and me to sing “The Two of Us” by the Beatles.

A few days ago, I was doing the dishes, absentmindedly humming a few bars to a pop song.

Sophie came up behind me and yelled, “MO-OM, STOP.”

I turned around, bummed but not surprised.

“Hey,” I said, “You said I could!”

She looked at me.

“I said you could sing and dance. I DIDN’T say you could hum!”

 

This piece was originally performed June 22 at the Great Storytelling Mashup of 2018 at Changing Hands Bookstore in Phoenix. 


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Party Hat

That Phenomenal Moment

posted Wednesday May 30th, 2018

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The dust is settling around Sophie’s freshman year of high school. It was one of the messiest yet. And also pretty awesome. Sometimes in life, all it takes is one phenomenal moment to make you feel like you’re doing the right thing.

I spent much of this last year looking for that phenomenal moment, the sign that Sophie was in the right place, at the right school, on the right track. There is no obvious path, not for Sophie. Even in Arizona, where state leaders brag there are more school choice options than anywhere else, there is no school designed for her, few that welcome a kid like her. So we are figuring it out as we go along. When you’re blazing your own trail, it’s easy to get lost. I don’t mind wandering a bit, even stumbling, as long as it’s my knees that are getting skinned.

But Sophie’s got enough challenges, navigating the world through the lens of Down syndrome.

I was reminded during Sophie’s freshman year that public school in this country for a kid with significant learning issues is death by a thousand paper cuts — a tangle of bureaucratic forms, lists and goals designed to ensure safety and success that too often results in distraction, confusion and excuse making.

The truth is that any meaningful education, anywhere, is about the people, not the paperwork. That’s what I’ve learned, anyway.

The pre-school teacher who still keeps in touch, more than a dozen years later. The school bus driver who showed up on our doorstep with a get well gift (a stuffed Winnie the Pooh — I’ll never forget that) when Sophie had open heart surgery. The seventh grade English teacher who made it her mission to fully include my kid in class and see her succeed, right down to her “Are You There God It’s Me Margaret” multi media book report. The drama teacher who treated Sophie like every other kid in that general ed class — and made sure the students did, too. The aide who made mainstreaming — and meaningful learning — possible for Sophie.

Those experiences — and those people — were hard won, all in the rear view mirror that first day of high school as I dropped her off, Taylor Swift (Sophie’s pick) blaring on the car stereo.

You take a deep breath
And you walk through the doors
It’s the morning of your very first day
You say hi to your friends you ain’t seen in awhile
Try and stay out of everybody’s way

I spent a lot of time worrying this year that the opposite was happening — that Sophie was in everyone’s way. I braced for every phone call, email, meeting, cringing and lecturing myself that this kid deserves a fair shake, a chance to learn, socialize, perform, grow up.

As we rounded the bend from the first semester of freshman year to the second, I was increasingly disheartened. I had not found our people, not really. Sophie’s English teacher made it clear she didn’t want her in class. I fought with her case manager over unanswered emails. Sophie hadn’t made the cheer line or the school musical, and although she was the shortest kid in her choir class, somehow she kept getting placed in the second or third row, completely out of sight during performances. She hadn’t made any real friends, but instead was obsessed with a senior boy who eventually (and understandably) blocked her texts and calls. A girl promised to take her to a dance, but backed out at the last minute.

We switched English teachers and case managers and I tried to keep the rest in perspective. Not everyone makes the cheer line. Not everyone can sing. Sophie seemed relatively happy with her largely imaginary friends.

Anyhow, everyone’s miserable in high school, right? I don’t love that storyline, particularly not for Sophie. Life is too short, especially when early onset Alzheimer’s is practically a given and life expectancy is better than it was but still not as good as it is for your peers.

Fuck that. I needed my sign, a sign that high school was going to at least be okay for Sophie.

I got it. Toward the end of the second semester, Sophie’s dance class participated in a school-wide show. It was intense — several nights of three-hour rehearsals, baskets (literally) of costumes, cues and moves learned over the course of the entire year.

I snuck into the auditorium during a dress rehearsal, prepared to not see Sophie at all, figuring that as with choir, she would be pushed to the back of a giant group, hidden. Turns out, she was anything but. The very last number in the very long show featured the beginning dance class, a large group performing to Sinatra’s “Luck Be a Lady.”

There was Sophie, quite literally front and center. She was a half beat behind everyone else, like she always is, but what she lacked in precision she made up with flair honed during a decade of dance classes. She was part of the pack, and totally visible in it; she was performing to the best of her abilities, and very much holding her own.

In that dance, I saw everything Sophie has worked for all these years, everything I’ve hoped for since her first day of pre-school.

It was magic.

And, of course, it was anything but. As always, it was about a person, a dance teacher who nurtured and celebrated my kid all year, who quietly made modifications when Sophie needed them, and who let her shine on stage without making a big deal out of it.

In the end, Sophie barely passed math, aced history, and did okay in English. She looked forward to school every single day, even though halfway through the year she told me she doesn’t want to go to college anymore; too much homework. There’s time to change her mind, and so much for her to learn and do over the next three (maybe more) years.

It won’t be easy. But she’s signed up for dance.


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Party Hat

Birthday Girls

posted Monday May 21st, 2018

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“HEY ARE YOU ALMOST DRESSED?” I yelled out from the bathroom one morning last week.

Sophie appeared in the doorway, wearing a tee shirt that said Hopeless Dreamer on the pocket, chewing hard on her well-worn thumb, almost twice the size of a normal thumb from years of sucking. Fifteen years.

“This is what 15 looks like,” I thought, gazing at her for a moment before breaking the reverie for the mad dash out the door to school.

It looks pretty good.

This morning Sophie was up early, at 5:30, ready for presents on her actual birthday. She burst into the kitchen and requested a cup of coffee.

“Now that I’m 15 I will drink coffee,” she said.

I put a lot of milk and sugar in it.

“It’s so weird that I’m 15,” she kept saying, almost to herself.

I get it. It’s weird to me, too. Sophie is caught in that space between child and adult, and I wonder all the time when and if that will end.

Yesterday at the spring ballet recital her moves were (almost) perfectly matched with her classmates, and from far away the biggest giveaway that Sophie is different was her boobs — the rest of the class, a couple years younger, was flat chested. She didn’t seem to notice or care, too focused on remembering the steps.

Sophie’s soundtrack these days is the Avett Brothers, Taylor Swift — and the “Wow Wow Wubbzy” theme song. She got almost every question right on her world history final this morning, I hear, but blew the math. She loves YouTube videos about how to put on makeup and organize your room. She is boy crazy. She has mixed feelings about her bangs. Last week, her dad noted, she used the word “viable” in conversation. Correctly. Last month she wanted to be a choreographer and photographer when she grew up; last night she told us she’d like to be a dancer and a babysitter.

She is, in equal parts, a giant pain in the ass and an absolute joy. About right for 15, no?

There’s another birthday today, the birthday of this blog. I know it’s weird to remember the birthday of a tiny media outlet, but it’s pretty easy to remember that I started Girl in a Party Hat on Sophie’s fifth birthday. Today that girl is 10. I baked her a cake, which Annabelle decorated.

This blog has been such a gift to me. I met some of my favorite people through it, worked out some problems on it, documented highs and lows and, I hope, offered a glimpse of what it means to raise a child with Down syndrome in the 21st Century.

I’ve definitely slowed down on Girl in a Party Hat in recent years, partly because I’ve been busy and sometimes a Facebook status update does the trick, but also because I’ve been holding back as Sophie gets older, and more aware. Sophie loves that I write about her, she always has. Last week she talked me out of three copies of my books, which she signed and gave to three of her high school friends.

“Mom,” she told me recently, “it’s time for you to write a second book, one about my teenage years.”

Not so fast, I told her. “We’ve got several years to go.”

I’m okay with taking our time. At almost 17, Annabelle is entirely too grown up — driving, taking the SAT, wrapping up her junior year of high school.

And so this morning, when Sophie asked for coffee again tomorrow, but in a sippy cup this time instead of a mug, I smiled instead of cringing — and said okay.

 


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My-Heart-Cant-Even-Believe-It-Cover
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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