Special Needs Now

10 Things I've Learned from My Daughter with Down Syndrome

One mom shares what she's learned in the first decade of raising a child with Down syndrome.

Penny at the trampoline park Courtesy of Amy Julia Becker
On December 30, we celebrated our daughter's 10th birthday. It was a typical party. We went to a local trampoline park with a dozen friends and cousins, the kids jumped a lot, and then we ate cake and pizza. Penny blew out the candles and beamed while opening presents.

That experience pretty much sums up what I've learned after 10 years of parenting a child with Down syndrome: It looks a lot like parenting my other kids. It feels typical in more ways than it feels unusual. Still, Penny's 10th birthday gave me a chance to think about all the ways I've grown up because of having her in my life, and the many things I've learned:

1. We don't need pity. We do need friends. Penny's disability makes pity easy and friendships hard, but we don't need anyone to feel sad on her behalf. She's not sad. We aren't sad. We don't need anyone to rush in to make things easier or quicker for her. We just need people to see her for who she is and love her in the midst of her strengths and her weaknesses.

2. The world is a better place with her in it. Penny makes friends wherever she goes. Her thoughts are focused on the needs of others most of the time. Despite some people who see children with disabilities as drains on social and economic resources, I am only more convinced of how crucial people like Penny are to creating a diverse, compassionate, and emotionally mature society.

3. Doctors are usually awesome. I used to be afraid of most medical professionals because I thought they would see our daughter as a specimen to be studied rather than a child to be served. With a few rare exceptions, the many doctors who have seen Penny over the years have encouraged us and cared for her with exceptional graciousness and kindness.

4. Hard work pays off. When Penny was 6, she stated her desire to do the monkey bars all by herself. She practiced and practiced, and when she was 8, she could do it. Just last week, she came home with a spelling list. I gave her a quiz and she got 12 of 24 wrong. The next day, we tried again. Six wrong, 18 correct. The next day she improved even more. On the actual test, she got one of 12 incorrect. She works harder than other kids in almost everything she does, and she usually does so without complaining. Her constant perseverance makes me want to work harder to achieve my goals, too.

5. She's just a kid. Penny has her own quirks and strengths that are different from other children—and different from other children with Down syndrome. She happens to love to read and takes no interest in art. Gymnastics fascinates her, but she doesn't care about sports. Cheeseburgers are her favorite food. She complains when her brother invades her space on the couch.

6. I'm just a mom. I remember seeing a boy with Down syndrome with his mother in the grocery store a long time ago. She was clearly irritated with him about something, and I felt offended, as if it wasn't fair for her to ever disapprove of her son. Later, the scene encouraged me because it reminded me that I didn't have to treat Penny any differently than my other kids. When she misbehaves, she deserves consequences. Sometimes I lose my patience with her. I'm no angel, and neither is she. I've learned to be grateful for our shared humanity!

7. We laugh far more than we cry. Any twinge of sadness I ever feel about Penny's disability pales in comparison to the great joy I feel every day when she bounces off the bus holding hands with her best friend, smiling and bright-eyed, ready to tell me about her great day. Or the gratitude I feel when she narrates her excitement over a new project at school. Or the peace I feel when she smiles again and falls asleep, happy.

8. Disability is a magnifying glass. Penny has strengths and weaknesses. She gives and she receives. She complains and whines and gets hurt. She loves and cares and learns. But in each case, the learning and giving and achieving is a little bit slower, takes a little bit longer than most typical kids. This slower, lengthened pace helps me to see her—and myself—more clearly.

9. Ignorance is not the same as prejudice. I used to be offended when people talked about Penny in ways that didn't fit with politically correct language. I use and support that language, but I've realized that saying everything exactly right in talking about disability is not nearly as important as a willingness to love and learn from individuals with disabilities.

10. Love is stronger than fear. I used to be afraid for what Penny's future held. Now I look forward to seeing what wonderful gifts she has in store for her family, her community, and the world.

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.