Where Are All the People with Down syndrome?

posted Tuesday July 22nd, 2014

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I will be the first to admit that I’m not good at math. And this is a math question. Partly, anyway. I think it begins with math — but I’m not sure it ends there.

Where are all the people with Down syndrome?

I managed to schedule my summer travel so I arrived home in time for the hottest week of the year in Phoenix. That’s okay, I’m actually a little sick of other places, eager to sleep in my bed, eat from my fridge, hug my poodle and catch up on bad TV. It’s been a good summer. I’ve hunted for sand dollars in La Jolla, caught up with old friends in LA, and tracked down what might be the only thrift store in Maui. I saw the Kara Walker sugar installation in Brooklyn, scarfed a knish on the Lower East Side and determined that Harlem is not yet gentrified (at least, not the part I saw).

Here’s one thing I didn’t see during my summer travels: a single person with Down syndrome. I was in crowded airports, restaurants, stores, museums and resort pools, on crowded beaches and streets. Not one. And it’s not because I wasn’t looking. I was. Early on, Ray and I determined that no one stares as hard as a parent of a kid with Down syndrome. Does that guy have it? That woman? That baby?

No. Not this summer. And here’s where the math comes in. If 1 in every 700 live births results in Down syndrome — the most common genetic disorder — then why don’t I see more people with it?

Where are all the people with Down syndrome?

I know the answer. They are at Disneyland. That is where I see people with Down syndrome on a regular basis — Disneyland and, sometimes, at the mall on a weekday morning when the group homes take their field trips. Nowhere else. Not as a rule.

And Facebook. I see them on Facebook. In fact, my feed is so loaded with friends and groups associated with Down syndrome that it’s easy to forget that many days, out in the world, Sophie is alone. The only one. Days go by when we don’t even refer to Down syndrome. (Well, maybe a day at a time.) Sometimes out in public, people stare. Often not. She’s tiny enough, I think, that many people think she’s just young. To be honest, I don’t know what they think. I watched her in the pool in Hawaii last week, a little girl in swim goggles and a polka dotted bikini, turning somersaults in the water til she has to stop to catch her breath. By the end of the trip, strangers (to me, anyway) we passed in the resort lobby were greeting her by name.

Sophie is only 11. Will there come a day when we’re done taking her along? Will there come a day when she can travel alone? Whenever I pose a question — about driving, living independently, getting married — well-meaning friends admonish me for being negative. But scanning crowds, looking for people with Down syndrome out there living their lives, I don’t get a lot of positive feedback.

Thousands? Tens of thousands? More? I think about the number of faces I passed over the last several weeks — at the 9/11 fountains, at Strawberry Fields, outside Grand Central Station. On the Venice Beach boardwalk, at the Denver airport. Not one.

When the girls were really little, Ray and I took them to the petrified forest and, unsolicited, a ranger glanced in the back seat then gave us a brochure, told us that we could get Sophie in free if we wanted. Any national park, her whole life.

“They do that so people take them with them, you know,” she said. She didn’t mean anything by it (and I think the park service might have discontinued the program) but I still think about it, all these years later.

Where are all the people with Down syndrome? I know there’s an answer to the math question. Beyond that, I’m not sure I want to know.

Saturday night, Ray, Annabelle, Sophie and I packed pillows and blankets, charged electronics and bought snacks for a red eye flight home. We sat in the crowded terminal, stood in a long line, finally took our seats near the back of the plane. As I got ready to sit down, I noticed a young man sitting just behind Sophie. I know his name was Miles, because it was embroidered on his backpack. He had wire-rimmed glasses and ear buds and looked more like Sophie than she looks like any of her family.

“Hey Ray,” I said, cocking my head slightly and smiling. He looked, then smiled back.

I took my place in the middle seat, a daughter on either side, and pulled the blanket over all of us, feeling inexplicably happy.

“A boy with Down syndrome sitting right behind Sophie!” I marveled, as the ativan kicked in and I drifted off. “What are the chances?”

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Tags: Filed under: Down syndrome by Amysilverman

5 Responses to “Where Are All the People with Down syndrome?”

  1. That’s weird, I just posted this to Facebook and it didn’t show up. Anyway, my math is terrible too but I know a little about odds and I know the odds of finding writing this lovely and touching on a blog on any day are very low! Thanks for the great read. And also, Ativan, you lucky thing!

  2. Lauren is 15 and we take her everywhere with us. We have three daughters and we have never done anything different with her. I always thought the same thing. Where are all the awesome people with Down Syndrome?

    A side note…I was very sick when I was pregnant. All three times I would have to pull over and throw up. One day I was thinking am I the only one that ever did this? I never see it with anyone else…

    Great read!!

  3. The questions about how our kids will manage adulthood are different, but not totally. I worry a lot, especially with this being Brennan’s senior year in high school. What kind of career can he have – he has one idea currently that is not realistic (for anyone) but I feel like shit discouraging it (it’s in the journalism world, so maybe you could talk him out of it?). Will he ever be able to drive? He says yes, but I told him that there’s the moral decision and not just the legal one (state of AZ is 3 months seizure free). Can he live on his own? Yes, probably, but he will probably either leave the nest slowly or one day just be gone and living in a swimming pool (we’re freaks about him swimming, so he’s already threatened to be in a pool every day once he turns 18).

    I know two people with adult children with DS. One is the daughter of the woman married to my father-in-law (it’s complicated). She is in her early 20s and lives in something like a group home, and it appears to be working out. The other is the older brother of friends of Abby & Brennan. He’s about 30 and lives at home with his mom, step-dad, 17 year old sister, and 11 year old brother. He works in the kitchen of a local hotel. He takes the bus there. His parents are very chill about the whole situation (they aren’t Jewish, so maybe that’s part of the lack of being slightly neurotic about anything really – I nearly lost their youngest son once when I was watching him after school – some nice City of Phoenix people returned him). He may not go everywhere with the family, but that’s probably more about his work schedule. He definitely gets out.

    It will be interesting (and hopefully not devastatingly sad) to see how our kids will grow and leave us (or not).

    And, I am also jealous of the Ativan. My Xanax doesn’t work as well as I’d like.

  4. Renee — I threw up EVERYT SINGLE day of both of my pregnancies. :)

  5. My son with Ds was born in Southern California in 2006 and we moved to Minnesota in 2010. I probably saw a total of three other people with Ds “in the wild” in that whole four years. Since we moved to MN? Everywhere. Seriously, everywhere. There is a huge support group community, there are four new kindergarteners starting at my son’s relatively small elementary school (who will join him and two other students with Ds). I see kids, young adults and adults everywhere. In CA I felt huge pressure to make sure my son was behaving in public, lest anyone attribute perfectly typical toddler behavior to Ds. Here, I am proud to be out and about with our family, and I would say on average I talk to at LEAST one other person with Ds or family member each week. I think about the difference constantly. Is it because there are more religious people in the Midwest and therefore more people that either forego testing or opt to keep fetuses diagnosed with special needs? I don’t know, but I do know that I feel so fortunate to have moved to a place where my son is so welcomed into the community.

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