Special Needs Now

Changing Expectations for Kids with Down Syndrome

Amy and Penny
When I first discovered that our daughter Penny had Down syndrome, I had all sorts of questions about her future. Many of those questions came in the form of fears. I worried about all the things she wouldn't be able to do as a result of her disability. I worried that our family would be marginalized. I worried she wouldn't make friends, grow up, enjoy her life.

Some of those fears seemed to be realized. Her "milestones" as a baby were delayed. One time, I sat at a birthday party with Penny on my lap. She wasn't walking yet, and all the other kids her age were already splashing in the wading pool, toddling in and out, interacting with each other. She stayed with me, where it was safe.

But it didn't take me long to realize that although Penny's limitations are as real as any child's, the possibilities for her and for other children with Down syndrome are real too. Penny amazes us at every turn—with her love for reading, her insistence on learning how to do the monkey bars (it took two years, but she made it) and do a cartwheel (still working hard on that one!), her care for other people, her quirky memory, her perseverance, her general delightfulness. I don't know what the future holds for Penny, or for any other child, but I do know that people with Down syndrome can do all sorts of amazing things.

For example, people with Down syndrome can:

Run a marathon: Jimmy Jenson is far from the only person with Down syndrome to complete a marathon, but his story of determination, growth, and joy around his experience with the New York City marathon is my favorite among many.

Give a TEDx talk: I first heard Karen Gaffney—a 38-year old with Down syndrome—speak nearly a decade ago after she had completed the athletic feat of swimming across Lake Tahoe. Recently, Karen inspired me again with her Tedx Talk about how All Lives Matter.

Become a model: Jamie Brewer, famous for her role on American Horror Story, made history with her role as the first model with Down syndrome to walk the runway during New York's Fashion Week. She's not alone. 18-year old Madeline Stuart, 2-year old Izzy Bradley, and 6-year old Ryan have all appeared in national ad campaigns in recent years.

Become a nationally-renowned sculptor: After years of institutional living, Judith Scott—an artist with Down syndrome—began creating sculptures of such stunning and enigmatic beauty that they eventually ended up as a show for the Brooklyn Museum of Art, with a write-up in the New York Times.

Get married: The documentary about Monica and David—two adults with Down syndrome—and their married life together won awards across the country. But they aren't alone. Jillian and Ryan, for instance, just spent their honeymoon on Hilton Head Island. There's also Jessica and Austin.

Become a photographer: Oliver Hellowell has Down syndrome. He's also a stunning wildlife photographer who is currently raising money to create a coffee table book of his photos.

Play the violin: Emmanuel Joseph Bishop has been playing the violin his whole life. This video of him at age 16 playing to a packed concert hall helps us all remember the incredible things that kids with Down syndrome can do.

As a mom, I know that none of these accomplishments tell me what Penny will do or who she will become. They just help me trust that she—like her brother and sister—has many gifts to offer. Our job as her parents is not to make sure she achieves something worthy of a Youtube video that goes viral. Our job is merely to believe in her, to convince others to believe in her too, and to help her become who she already is.

Amy Julia is the mom of three kids who love broccoli and hot dogs, and who ask for lollipops every day! Her guilty pleasures are Chardonnay and Diet Coke. She is also the author of Small Talk: Learning from my Children about What Matters Most and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. Visit her at amyjuliabecker.com.

Baby Care Basics: What is Down Syndrome?

Image: Courtesy of Amy Julia Becker