Dear  Teachers, Staff, and Students:

Welcome back from Fall Break! I can’t believe an entire quarter of the school year has already flown by. By now you might have met my daughter, Sophie, who is a freshman. If not, maybe you’ve seen her in the halls, at cheer tryouts, or singing at the school’s recent choir concert.

Sophie is probably the smallest kid in high school. She might hit 4’10″ in her Birkenstocks. Most days she can’t wait to get out of bed and get ready for school — she really hated the middle school dress code, and loves to choose her outfit each morning. Like a lot of kids, she’s not great at math. She really loves her dance elective. Pretty much every day, she eats lunch in the choir room with her friend Tatum. I think she might have a crush on a senior boy. She’s currently debating whether or not to try out for the spring musical, Shrek.

There’s something else you should know about Sophie: She has Down syndrome. Down syndrome is the most common genetic condition but don’t feel bad if you’ve never met anyone who has it; it’s pretty rare. Only about 1 in 700 babies are born with it these days.

As  you already know if you’re in class with her, Sophie is enrolled in regular high school courses; often, she has an adult working with her. It’s awesome that she has this opportunity, we call it being “mainstreamed.” Not so long ago, kids with Down syndrome and other intellectual disabilities were sent away at birth to institutions. They were not raised with their sisters and brothers, or educated alongside their neighbors.

That has changed, thanks to amazing schools like this one. But because this is a relatively new thing, it means that Sophie is a little bit of a pioneer.  Most days, that’s really cool. Every day, it’s a challenge.

Sophie was the first person with Down syndrome I’d ever met. You can imagine how awkward that was for me, since I’m her mom and we met when she was born. So I get it if maybe you’re not quite sure how to approach her — or perhaps need her to give you a little space.

In the last 14 years, I’ve learned a lot about Down syndrome, and, of course, a lot about Sophie. October is Down syndrome Awareness Month, so I’ve put together a list of things that Sophie, our friends and family, and I thought you should know about it — and her. If you ever have questions, you can find me on my blog at girlinapartyhat.com or at amy_silverman@yahoo.com. And here’s a video that explains Down syndrome really well.

Down syndrome is not contagious.

Each of us has 46 chromosomes — 23 from mom, 23 from dad in each of the millions of the cells that make up our bodies. This happens at conception, when the sperm and egg meet. Sometimes science intervenes and an embryo winds up with more chromosomes, or something goes haywire with one.  Down syndrome is also known as Trisomy 21, because it means that a person has an extra 21st chromosome. Sometimes not every chromosome is affected; that’s called mosaicism. Like Sophie, most people with Down syndrome have 47 chromosomes in each of their cells.

Because of this chromosomal difference, people with Down syndrome sometimes share similar characteristics. People with DS are often smaller in stature, have almond-shaped eyes, flat noses, straight hair, and small mouths. They can have hypotonia, which means low muscle tone and extra flexibility (you should see Sophie do the splits!). Sophie has a little more trouble than the rest of us when it comes to tying shoes, buttoning buttons, and handwriting. About half the babies born with Down syndrome have a heart defect (you might have noticed Sophie’s scar — she had open heart surgery at 4 months and again at 4 years, but we’re hoping never again). All people with Down syndrome are affected cognitively, which means learning is more difficult for them, to varying degrees.

Down syndrome is different for every person who has it.

This one is really important. It’s natural when people share a label — and some physical characteristics — to assume that they are the same. But just as that’s not the case with other groups, it’s not the case with people with Down syndrome. I’ve heard staff at the school comment that people with Down syndrome “are all nice” and “all like to high-five.” Not really. I’ve met lots of people with Down syndrome. Some like to dance and sing and act silly; others are quiet and athletic. The stereotype is that people with Down syndrome are loving. Sometimes that’s true, sometimes it isn’t. Just like with the rest of us.

Just like there’s no one out there quite like you, there’s no one out there quite like Sophie, a girl who loves YA novels, YouTube makeup tutorials, Disneyland, shopping, poodles, going out to eat, sleepovers, ballet class, the beach, Project Runway, and being with her cousins — and dislikes spicy foods, chores, riding in the back seat, and hearing her mom sing.

“Sophie’s funny, she’s creative, she’s an artist, she’s motivated, she’s determined, playful, friendly, fun, beautiful,” says her sister Annabelle, who is 16 and a junior at another high school in town. “She’s also sassy and manipulative and bossy but also the best sister.”

Annabelle’s advice when it comes to someone with Down syndrome?

“Get to know them. Talk to them. And don’t care about what other people think.”

People with Down syndrome are often just like the rest of us.

“People with Down syndrome go to college, play in bands, drive cars, fall in love, are DJs and reality TV stars, get their hearts broken, have sex, get bored, play sports, love rap music, need help sometimes, love to help other people, have jobs, get grouchy, own restaurants, are artists, wear braces, love ice cream, have lots of adult friends, are good friends, want to make friends,” says my friend Lisa, whose son, Cooper, is a high school sophomore and has Down syndrome.

People with Down syndrome might learn differently than you and I.

One of Sophie’s long-time instructors explains that often people with Down syndrome “process information differently but are able to learn. When Sophie learns a skill or concept she never really forgets it; she just may not be able to remember it on the spot. Like in a test.”

You can say “no” to a person with Down syndrome. 

Sophie is an amazing self-advocate. From the time she was a very little girl, she’s known what she wanted — and worked to get it. That’s awesome. It’s why she is so successful in so many ways. But in class or social situations, it can mean she comes on a little strong. Just as you would with any student or friend, you can tell her no! In fact, it’s a good idea. Don’t be mean, but also don’t hesitate to be honest. As a family friend put it, “Sophie wants to be seen. Like we all do.” You can acknowledge her but also let her know that it’s not appropriate to interrupt a conversation or insist on answering a question.

People with Down syndrome might not want to talk about it — or have it.

When Sophie was 8, she started telling us that she doesn’t like having Down syndrome. She struggles with it. Like most high school kids, she wants to be just like her peers. If you ask her about what it’s like to have Down syndrome, she probably won’t want to talk about it.

She is happy that I’m writing a list. Sophie wants people to know what DS is. I asked her if there was anything she wanted to say here and she said this:

“Don’t judge the people with Down syndrome.”

October is Down syndrome Awareness Month, so my Facebook feed is full of beautiful photos of kids with DS and wonderful explanations of Down syndrome. Lots of people are posting a popular short essay called “Welcome to Holland.” I’ll be honest. It’s not my favorite. Here’s why, in an excerpt from “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” published this spring by Woodbine House.

Years ago, I interviewed a pediatric neurologist in Phoenix for a story I was writing about autism. He was a gentle older man confounded by the fact that the rate of diagnosis was rising; in contrast, my story was about parents who resist a diagnosis, who are in denial.

Before we dug into science and statistics, I explained to the doctor that I was intrigued by the way autism was diagnosed because I had a young daughter with Down syndrome—a question answered with a blood test at birth (or a diagnosis before that, even) as opposed to the never-ending questions surrounding an autism label. Autism can’t be diagnosed with a blood test, and not prenatally at all, and symptoms typically don’t appear or aren’t noted until the child is two or older.

And then actually testing for autism is a tricky proposition. In many ways, it’s like pornography—the medical profession knows it when it sees it. That’s not good enough for some parents, understandably.

It’s a tricky, complicated subject, and, at the time I was writing the story, it was frankly a welcome relief from thinking about Down syndrome 24/7. I didn’t mean to make Sophie more than a passing reference in my conversation with this busy physician. But as soon as he heard “Down syndrome,” the doctor was up and out of his chair, rushing out of the room and returning with a grin and a typed sheet that had obviously been Xeroxed many times. The words were hard to read, tilted and worn.

No matter, I’d already read “Welcome to Holland.” I smiled and thanked him and tucked the paper inside my notebook, trying not to cringe visibly. The short passage was written by Sesame Street’s Emily Kingsley in 1987 about her son Jason, who was then thirteen.

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this,” she begins.

Then Kingsley shares a metaphor that will later be used in the title of books, published all over the place, Xeroxed repeatedly and handed to parents like me.

It’s like you’ve planned a trip to Italy, Kinsley writes – but instead wind up in Holland. It’s still beautiful, it’s still amazing, but it’s different, disconcerting at first.

“The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

“So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy.”

Kingsley concludes:

“If you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.”

I love Sesame Street, and I have nothing against Emily Kingsley. But I was never a fan of “Welcome to Holland.”

I’m sure many parents have found solace in what they see to be great insight. Not me. I’m not alone; in fact, there are entire online forums devoted to the hatred of this piece.

It’s sappy. It’s simplistic in a way that having a kid with disabilities is not and never will be, not for me anyway. And for a long time, I was still too hurt and angry for platitudes. Looking back now, I realize that part of what upset me was that it felt like this was all anyone was handing me – this comparison between these two places. I needed more.

Ray and I had been to both Italy and Holland before Sophie was born, and I didn’t need to be reminded of carefree trips to Europe at a time when I was quite sure my life had ended.

“You know, I’ve been to Amsterdam, and THIS IS NOT LIKE AMSTERDAM,” I said to Ray, waving the paper, gritting my teeth. “I don’t see hash bars or tulip fields or awesome flea markets in this scenario, do you?!”

He just made a face.

I knew I was supposed to fit into this new role as parent to a kid with a disability, but I didn’t know how to do that. Those moms were harried but tender, stoic and knowledgeable. They kept their hair short, drove light-colored mini vans, and always had a Wet Wipe ready. They were selfless, kind, and accepting. They did not wear make-up. I had the last one covered; other than that, I was fucked.

“You know, I’m not your typical special-needs mom,” I told a nanny candidate when Sophie was very young.

“Yeah, well, who is?” the confident young woman shot back—snarky but correct. I hired her, warily, and added my faux pas to a quickly growing list of things I was ashamed I’d said.

The truth is that I was watching my friends go somewhere while I was stuck someplace else, a place with medical scares, staring strangers, preschools that wouldn’t take my kid, sleepless nights worrying about her future—and mine.

I was drowning and I needed help.

(Gorgeous artwork above by the incredibly talented Monica Aissa Martinez. This is Sophie’s karyotype. Monica “mapped” Sophie this summer. More on that soon.) 

This might be because as a journalist (particularly one who edits a food blog) I find myself bombarded constantly with PR requests to cover National Margarita Day by writing about a client’s tequila or to celebrate Breast Cancer Awareness Month by publishing photos of a company’s pink-ribboned cupcakes. It’s fake, created, ridiculous and often done for the wrong reasons.

That said, I get that it’s good to remind people. (Not about tequila, I don’t seem to forget about that.) As I’m fond of saying, in my house every day is Down syndrome awareness day. Perhaps not in yours. And so I’m not going to bag on the “31 for 21″ campaign, which encourages Down syndrome bloggers to write every day in October, which does in fact happen to be Down syndrome Awareness Month.

I’m also not going to promise to blog 31 days in a row this month. But I’ll do one better: I’ll introduce you to five of my favorite bloggers, all of whom happen to write about Down syndrome on a regular basis. I have to admit that since starting Girl in a Party Hat more than five years ago, I’ve fallen behind in my writing but even more in my reading — I don’t keep up with other blogs the way I once did. (No one has enough time for everything these days, do we?) But here are five you should know about, for when you have a few free moments. Some of these bloggers are doing “31 for 21,” others aren’t. They are all beautiful writers who have taught me a lot. Enjoy.

Everything Happens for a Reason by Maya Kukes

To say Maya is a kindred spirit doesn’t begin to describe it. From taste in graduate schools to taste in crappy movies, we have a lot more in common than the fact that our kids have Down syndrome. Finding Maya was a huge relief — and a joy — in a lot of ways.

When the house lights went down, Leo took my arm for a minute, not sure what to expect, I suppose. When the show started, and the actors began speaking (and there were puppets!), Leo crossed his legs, leaned forward, and was instantly hooked.

Aside from laughing and clapping at all the right places, the only sound Leo made was when the first web with the words “Some Pig” appeared. “Some pig!” he announced, decidedly not whispering. He leaned over to the unsuspecting man next to him, pointed at the web and said “Some pig!” The patient man (a dad) caught my eye and smiled at me, and then Leo. I drew the line when Leo crouched down and attempted to tap on the shoulder of the woman in front of us (he apparently wanted to tell her about “Some Pig!” too.

Unlike “Some Pig,” Leo couldn’t read “Radiant” or “Humble,” the next words to appear on Charlotte’s Web. I assure you that when he leaned over to ask me “What’s that say?” he immediately attempted to tell Dad Next To Us about Radiant and Humble. Luckily, patience mostly abounded that day and Leo’s neighbor indulged him with a sweet nod. Read more.

My Name is Sarah by Sarah (and Joyce) Ely

This is a very special blog, written by Sarah, who is a young woman with Down syndrome. Her blog has given me a window into what Sophie’s life can be like; it’s an incredible gift.

This is Joyce. [Sarah's mom] We frequently get questions wondering how Sarah blogs. So we decided to show you. Although internet blogging has only been around for a few years, Sarah and I have really been engaging in the same process since 1995 or so. It was just more primitive, ie: photos, paper, three ring binders… Read more.

Ordinary Afters…. by Nicole Hines Starkey

I follow Nicole and her husband on Facebook and she and I are both big Instagrammers, so some days I feel like I know her family better than those I’ve actually met. Her writing is lovely.

She turns and runs to the pantry grabbing one of the set of pint-sized aprons we keep on hand for cooking. She hands it back up to me and turns her back waiting, knowing that I will tie it in a gentle bow and acquiesce to her request. I lean down and kiss her strawberry locks and hand over the rainbow whisk that she loves to “cook” with. There may not be time to make actual muffins. But certainly there is time for the even better make-believe ones. Because I can see it. I can see her mind and many of its facets so much more clearly now than I could a few short years ago. I can see when she is pretending and when she is serious. When she is ready to learn and when she is ready to teach. When she is ready to work and when she is ready to play. Read more.

*Results Not Typical by Chrystal Smith

Rum cake is her kryptonite — but otherwise I don’t think there’s anything that can stop this woman.

They came into my room when she was twelve hours old, before I could even see the symptoms on my own, before I had the opportunity to get to know her, before I had the chance to build up my defenses.

They looked at her and told me what they suspected. They wanted to take her blood. They needed proof of what they already knew and what it would take me quite some time to accept.

I consented, if only to show them how wrong they truly were. They may have been smart, but I had it on good authority that I had done everything right. I knew that my times of struggle were over. I knew that it was my turn to be happy. I knew this couldn’t be my destiny. Read more.

Unringing the Bell by Tricia Theis Rogalski

Ah, Tricia. Another friend I’ve never met, but I know her comings and goings — in a good way.

Georgia…well…Georgia insists. She goes through phases, wears things OUT with the phases, learns songs inside and out, tv dialogue inside and out, entire dance sequences INSIDE AND OUT, and then, finds a new obsession. Then, after a few weeks or months, when you happen to put one of the old obsessions in the player, she is typically delighted. So delighted she falls in love all over again. Annnnnd repeat. (Although, eventually, much to our delight, some things just fall our of rotation entirely. For instance, she doesn’t tolerate much Sesame Street anymore.)

She’s very…let’s say routine-based…in life in general. She used to yell out whenever we went a different route home and get very upset. If I ever have to make a pit stop and she thinks we’re going home I sure as shootin’ better announce it…preferably a number of times from the moment we get in the car. “Georgia, first we’re going to the grocery store, THEN, we’re going home.”

First, Then, First, Then, First, Then. Story of my life. Read more.

Mine, too, Tricia. Mine, too.