A Letter to the School Where My Daughter With Down Syndrome Attends High School

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 the 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 did not like 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. 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 be surprised 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.

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.

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 Sophie is a little bit of a pioneer.

Most days, that’s really cool. Every day, it’s a challenge.

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.

Down syndrome is not contagious.

Each of us has 46 chromosomes — 23 from mom and 23 from dad in each of the millions of cells that make up our bodies. This happens at conception, when the sperm and egg meet. Down syndrome is also known as Trisomy 21, because it means 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. Some of the characteristics could include: smaller in stature, almond-shaped eyes, flatter nose bridges, straight hair or smaller 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 of 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 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. She 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 want to have it.

When Sophie was 8, she started telling us 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 I’m writing a list. Sophie wants people to know what Down syndrome 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.”

Please don’t hesitate to reach out — to me or to Sophie.

If you ever have questions, you can find me on my blog at girlinapartyhat.com.

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