A report in the Taipei Times last week revealed that prenatal testing has significantly reduced the number of babies born alive with Down syndrome in Taiwan. While 70 percent of pregnancies positive for Down syndrome resulted in live births in 1994, just 6 percent did in 2010.
The shocking statistical breakdown: 96 percent of all pregnancies with Down syndrome are ending in abortion in Taiwan, as noted by Mark Leach, a Louisville, Kentucky attorney who blogs at Down Syndrome Prenatal Testing and dad to a daughter with DS.
The key reason behind the trend, experts say, is the growing number of women getting prenatal testing, as endorsed by the Taiwan Society of Perinatology.
This news should have a lot of people questioning the ethics of eliminating an entire population of people, which is basically where Taiwan is headed. It sounds like something in a futuristic movie, the breeding of a race free of the differences—the awesome differences—that kids with DS and other special needs bring to the world.
It’s not always possible for people to understand just how amazing having a child with special needs is…until they have one. Taiwan’s been urging women to undergo prenatal testing but it needs a whole other campaign that would benefit its population: one that would raise awareness about the wonders of children with Down syndrome.
Good Morning America recently held a Katy Perry music contest for high-school students. All they had to do was submit a video set to the singer’s “Roar” featuring fellow students, up to 2 minutes long. This week, one done by teens at Verrado High School in Buckeye, Arizona became one of five finalists. The winning school (to be announced on October 18) gets a Katy Perry concert, which will be broadcast live on GMA.
Cool, right? But the coolest part of all is that the video’s star, senior Megan Squire. She’s been on the cheerleading squad for four years and is now on the varsity squad, per AZ Central. And she happens to have Down syndrome. The video reenacts her tryouts for the team.
Roar, Megan, roar! A whole lot of us are cheering you on.
I know a lot of moms of kids with special needs who loved their child right away. That’s not my story. My memoir chronicles my grief process, and ends with me falling in love with my baby. Polly is now seven years old. Four years ago we adopted another little girl, Evangeline, who also has Down syndrome; she’ll be seven at the end of October. My children with Down syndrome regularly teach me things about life I desperately need to learn. These include….
1) Keep trying
I watch Polly work with her occupational therapist at writing her name. Her hand shakes as she grips the number two pencil. She’s frustrated. The letter Y is hard to write. “Take a deep breath, Polly. Try again,” coaxes her therapist. What Polly has accomplished so far in life has taken a great amount of work. Some skills she has yet to master, but she keeps trying. I think about that when I come up against hard things in my life like depression, business and not having enough mental and physical energy to complete all the tasks in my day. Instead of giving up, I try to follow Polly’s lead and push through.
2) Look past the stereotype to the person
When Polly was born, my older girls Elaina and Zoya loved her right away. All three girls taught me to look past the stereotype, to the person. “Down syndrome just means it may take Polly a little longer to learn something, right? But we love her. And we will love her, right Mom?”
3) Be grateful for what you have
Our daughter Evangeline loves her light-up cookie jar. She carries it around the house with her. It makes sense though, because 1) she’s a kid and 2) she spent the first two-and-a-half years of her life in a Ukrainian orphanage. The day we took her home, she left with nothing but the clothes on her back. Watching Evie as she plays with her favorite toy reminds me that there are a lot of favorites in my life as well: My husband, my kids, our home, the life we’ve built. It would do me some good to slow down, pay attention to my favorite things and e thankful for what I have.
4) Communication happens without words
Evangeline is six years old and nonverbal. She is starting to use PECS (a picture exchange communication system) to assert her wants and needs but really, this kid has been communicating since we got her. At first she communicated that she didn’t know us, love us, or trust us by staying away and soothing herself. Now, sometimes when I am in the kitchen or upstairs doing chores there’s a little tug on my shirt. I look down and my child is there, arms reached up to me. Love finds a way to communicate.
5) Education is everything
I’m at the park with my girls, swinging one of them in a swing. The child next to us asks her mom why Evie looks different: “Why doesn’t she talk?” Unsure of how to handle the situation, the mother shoos her daughter away and I sigh. I can’t judge this mom. What we don’t know can be scary. But education is important. If we start with kids, they get to live their whole lives unafraid of people who are differently-abled. That’s why I work to educate those around me about Down syndrome.
6) Honest questions deserve honest answers
I’m at Polly’s first grade class reading “My Friend Isabelle,” by Eliza Woloson. Afterward I ask the children for questions. One kid raises his hand. “Why is Polly different than the rest of us?” I smile, admiring his candor. “Polly isn’t different than the rest of you. But she does have Down syndrome, which means she has one more chromosome than you. Chromosomes are like directions in the body. The fact that Polly has more just mixes up some of the directions for her, which means it may take her a little longer to learn things, but she’ll get there.” The little boy nods. He understands. That’s all it takes.
7) Be a good friend
Polly sees that Evie dropped her favorite snack on the floor. She stops what she is doing, walks over and picks it up for you. “Here you go, Evie. I love you.” Of course, I would like to think that I knew how to be a good friend before my daughters came along. But the difference is this: Evie doesn’t interact with Polly very much yet, and yet Polly continues to be kind and do right by her. That’s what I mean. My kids teach me how to be a good friend for people’s sake, not for my own.
8) Choose positive
Every day I have a choice in life. I can focus on negativity—what’s negative about me, about my kids and our life. Or I can attempt to focus on the posit. My girls seem to seek out the good in situations, others and themselves. It is a lesson I keep learning. Polly’s home from her first day of second grade. She struts around the house, high-fiving her sisters, her dad and me. “Yeah! It’s the last day of school!” We laugh and tell Polly that it isn’t the last day of school, but it is the first. She giggles at herself, shrugs her shoulders and starts towards us again for another round of high-fives.
Karrie Brown, 17, of Collinsville, IL, recently did a modeling shoot for Wet Seal. This wouldn’t be headline-making, except she landed it through social media. Also, she has Down syndrome.
When I first saw the photos of the shoot over at Today.com, I felt happy that another young person with special needs was appearing in an ad. The story started on Karrie’s Facebook page. A note posted read, “Karrie has Down syndrome, but she doesn’t let that stop her from following her dreams, which is to be a model. We recently found out that Wet Seal has started carrying plus-size clothing, which happens to be a great fit and fashion for girls with Down syndrome. Wet seal if you are listening, ‘Karrie fits in while standing out!’ and that’s directly from your mission statement.”
The message made its way to the Wet Seal powers-that-be, who promised “something special” if Karrie’s page got 10,000 likes by the end of the week. Brown got 14,000—and a photo shoot in L.A., with the company treating for flights, a hotel, a new wardrobe and a trip to Disneyland. All this is wonderful for Karrie, an aspiring model. But I think people are getting the wrong idea. A lot of the articles about this gushed about Karrie’s dreams coming true. Buzzfeed called her “adorable,” a patronizing description. Only a few, including ABC News, reported that Karrie’s photo shoot is set to be released on Wet Seal’s website and social channels in coming weeks. It was as if the actual ads themselves were not a big deal.
Companies placing kids and teens with special needs in ads isn’t exactly a trend, but it’s happening more and more. Last year, beautiful Valentina Guerrero—who also has DS—was chosen as the face of a swimwear line. Target, Nordstrom’s and Toys ‘R Us have also featured children with Down syndrome in their ads as well. Whether or not companies are doing this to get attention is besides the point; this is what companies do, draw attention to themselves. It isn’t “exploiting” kids with special needs, as some naysayers have claimed, any more than using cute, attractive, photogenic kids without disabilities in ads is. Actually, it’s equalizing.
Karrie’s shoot was surely quite the thrill. But this is a young woman who wants to be a model. People should be talking about how this could be the start of her career. People should be talking about how Karrie will fit right in with all the other pretty young women on Wet Seal’s site. People should be talking about whether Karrie could be the first young woman with Down syndrome tapped by a major modeling agency. It’s belittling to say that her “dreams” came true with the photo shoot, because she is capable of achieving so much more.
Think about it this way: If Karrie were any young, aspiring model who happened to have caught Wet Seal’s attention through a Facebook campaign, would everyone be saying that the photo shoot itself had fulfilled her dreams? No, they wouldn’t. I’m thrilled this happened for Karrie, but I have higher hopes about where it could lead. We all should.
Duke and Duchess William and Kate are purchasing a painting from an established British artist for Prince George’s nursery. That wouldn’t be such headline-making news except the very talented artist, Tazia Fawley, happens to have Down syndrome. This could be an amazing thing for kids and adults with DS, and other special needs.
Tazia’s been painting for ten years, mainly landscapes and seascapes. She is a member of Heart and Sold, a charity supporting and showcasing artists with Down syndrome. Fawley had painted the acrylic Rupert Flies Over the Clifton Suspension Bridge several years ago. The director of the nonprofit sent a letter to St. James Palace asking whether the royal couple would like the painting to honor the new baby. Yes, they did.
I can’t even imagine how many people have no clue that, yes, people with Down syndrome (or other special needs) have artistic talents—just like any people. I know from raising Max, who has cerebral palsy, that people tend to mostly see the disability, not the ability. Or as may be the case, they’re blinded by pity. The news is surely going to open a lot of people’s eyes.
Fawley’s lives with her mother, sculptor Gylda Thomas, and paints in her own studio. As Thomas told a local paper, “I think most people’s attitude toward anybody with a disability is that they feel sorry for them. But it’s hard to feel sorry for Taz when she can do something so well.”