You can also get involved in the annual National Buddy Walk Program, which seeks to raise awareness and funds for Down syndrome research by hosting walking events throughout the country. Watch a public service announcement for the National Buddy Walk Program below, which features TV hosts Nancy O’Dell (also a Parents magazine columnist) and Meredith Vieira, along with actors John C. McGinley (“Scrubs”) and Chris Burke (“Life Goes On”).
Look for more Parents.com/NDSS.org resources later this month or head over to Ellen Seidman’s blog, To the Max, which is chronicling stories to celebrate Down Syndrome Awareness. If you have a story to share, you can also participate in the My Great Story campaign, which encourages families to share their stories on NDSS.org.
When our daughter Penny was diagnosed with Down syndrome two hours after she was born, I immediately worried about her future, her health, our ability to take good care of her, and our community’s willingness to accept her. I thought my world would shrink into a closed room with four walls labeled disability, special needs, developmental delays, and early intervention. But by the time she was one year old, I wanted to introduce her to strangers on the street so that they could share in her infectious smile and ready wave. I’m only five years into parenting a child with Down syndrome, but I’ve learned a few things that have helped me become a better mother to Penny (and to her younger brother and sister, who have developed typically).
Learn to Give and Receive
Before Penny was born, I treated life as if it were an equation. Hard work plus a happy childhood equaled a productive and satisfied adult. Penny helped me to understand that human beings aren’t products on an assembly line. We all have different needs and different abilities. Penny’s needs are more obvious than mine, and her body is more vulnerable. And yet her classification as “disabled” has served to show me my own weaknesses—my impatience, my tendency to judge people based upon surface impressions, my stubborn independence. I remember a time when a young woman with Down syndrome came to our house. She didn’t speak very clearly, and she needed assistance with some simple household tasks. But she sat on the floor with our son, William, who was being fussy, and her gentle, soothing presence brought him great peace. This event is one example of what I have learned–to see life as a web of relationships based upon giving, receiving, and mutual care. Penny has taught me not only to receive her as a gift, but to view every person in my life as a unique being with something to offer.
Stay Focused on One Thing at a Time
Early on, I learned that I couldn’t predict when Penny would reach developmental milestones. The half-dozen baby books on my shelf wouldn’t help me if I wondered when she “should” roll over or clap or eat with a spoon. For a while I thought I needed to let go of goals for her altogether because I didn’t want to equate her value as a human being with her ability to walk or talk. But eventually I realized that Penny would learn and grow, even if she did so at her own pace. My husband and I started to focus on helping Penny learn the next thing, whatever that might be. Now that she’s in kindergarten, we ask: What’s the next thing she needs to learn about reading? About numbers? About friendship? It’s easy for all parents to spend too much time worrying about the distant future; trying to focus on one thing at a time has provided me emotional freedom.
Concentrate on Character Instead of Comparisons
When Penny was a baby, I often found myself analyzing other children her age and wondering how she measured up. If I discovered that she could do something another kid couldn’t, I felt self-satisfied and superior. On the other hand, when other kids her age could run across the room and Penny still hadn’t begun to crawl, I felt panic rattling inside my chest. I finally realized that whenever I met another child, I asked, “What can she do?” and the comparison would push me away from that child and parent. If I changed my question to “Who is she?” it allowed me to focus upon the child’s character. Every child became valuable and interesting once I stopped comparing them.
Now, with a happy, healthy child who has just started kindergarten, I wonder sometimes why I felt so scared. Having a child with Down syndrome has expanded my world, and my heart.