Martha Beck explains how her son’s Down syndrome diagnosis affected her parenting plan.
Having a baby who is diagnosed with some disability either before birth, as my son was, or shortly after birth or even a few years later as is the case in many disorders like autism, it’s a very confusing thing because while you love the child and you are thrilled that the child is in your life, you are also grieving the loss of the child you expected to have.
So it’s a very complex thing and when I had a prenatal diagnosis, not many people with that diagnosis were keeping the babies, so I really didn’t have a lot of people to talk to.
And people tried to comfort me by saying there are things we can do to help make him normal.
We can put him in occupational therapy; we can do all these things… they would say, “I know someone with Down syndrome who has a driver’s license, or who lived to be 70 or who can play the piano.”
And I was supposed to push through all these therapies to make him more normal and it was like, it felt wrong. It felt like a consolation prize.
So I started to think one day, it’s a little bit like you went to the puppy store to buy a puppy, and all your friends have puppies.
And you have a big plan for how you are going to train your puppy and how you are going to play fetch and he is going to help you hunt and all the stuff.
And you get him in a little cage, you come home, you open the cage and it’s a kitten. And your friends come by and they are like, oh, oh sorry.
And then they start to say well you know, there are ways you can get kittens to act like puppies. We could train your kitten to wag its tail.
I know a kitten who can almost bark. Some kittens can lift their legs and pee on a tree. And you start to think, wait a second, I wonder what kittens do.
So I started to watch my son instead of thinking of him as less than normal I just thought of him as other. He is a kitten not a puppy. And it turns out I really like kittens.
So, at the same time that I felt bad that I didn’t get a puppy, and it’s fine to feel bad, really, really bad that you didn’t get a puppy. It’s also okay to just watch and see what kittens do.
Don’t try to turn your child into what you expected. Go through the grieving process for the child you lost, that’s real, but then start to watch the child you’ve got and you will find that there are so many gifts that come with every condition.
About Martha Beck:
Martha Beck, Ph.D., is a writer and life coach who specializes in helping people design satisfying and meaningful life experiences. She holds a bachelor's degree in East Asian Studies and master's and Ph.D. degrees in sociology, all from Harvard University. She has published academic books and articles on a variety of social science and business topics.
Her non-academic books include the New York Times bestsellers “Expecting Adam” and “Leaving the Saints,” as well as “Finding Your Own North Star: Claiming the Life You Were Meant to Live” and her newest book, “Steering by Starlight.” Dr. Beck has also been a contributing editor for many popular magazines, including Real Simple and Redbook, and is currently a columnist for O, the Oprah Magazine.