Growing Up with Down Syndrome

Last updated on: April 26, 2012 at 7:40 pm by Amy Julia Becker

Growing Up with Down Syndrome 2012-04-26T19:40:37-04:00 Amy Julia Becker

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I don’t think about it much any more, but when Penny was born, some of the hardest questions to face were those about her future. Will she ever drive a car? Get married? Have children? Hold a job? Live on her own?

Those questions still exist, of course, and they come up from time to time, but for the most part my questions about Penny remain focused on the day to day needs of our life: How do I help her learn to listen? How do I make sure she knows how much we love her? How do I convince her to try riding a bike again even though she’s scared of wiping out?

But sometimes I stumble across articles about adults with Down syndrome, and I’m always fascinated by the lives they live. I’m no longer worried about Penny’s future, but I do love thinking about what her life might look like as an adult. Over the weekend, I read a lovely article about a young married couple in Texas. Austin and Cristi both have Down syndrome, and they are married. I would contest some of the details the article offers about Down syndrome, but I was grateful for the portrait of Austin and Cristi together. Not only did it describe the rather ordinary marriage–with spats about cleaning and cooking and deep loneliness without one another– but it also hinted at their lives as adults.

The details of their strengths and weaknesses fascinated me:

Christi has her driver’s license and can speak conversational Spanish, but has the dangerous habit of looking down when she crosses the street.

This is a portrait of ability and disability, of dependence and freedom, of individuals and community. It’s about Down syndrome, but it is even more about marriage, about love and friendship and disputes and reconciliation and lying in bed together at the end of the day.

I commend the whole article, and please use the comments section here to offer any thoughts or questions it raises for you.

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