New Post at NYTimes.com/Motherlode: Has Down Syndrome Hurt Us?

Last updated on: October 4, 2011 at 9:37 am by Amy Julia Becker

New Post at NYTimes.com/Motherlode: Has Down Syndrome Hurt Us? 2011-10-04T09:37:21-04:00 Amy Julia Becker

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I have a new post on Motherlode, the parenting blog of the New York Times: “Has Down Syndrome Hurt Us?”. (Incidentally, for those of you who love the content of Motherlode and read it regularly, as I do, Lisa Belkin, the editor, is moving to the Huffington Post. I’m hoping to continue to contribute to one or both outlets.) I’ll paste the beginning of the post here, in hopes that you’ll click over to Motherlode and read it in full. I also commend the comments to you. As usual on Motherlode, they are contentious, with some advocates for individuals with Down syndrome and others who read the post as passing judgment on anyone who aborts a pregnancy after a prenatal diagnosis. A lot of the comments come down to the role of stories in ethics. Should decisions about pregnancy termination be based only or primarily upon data points or should they include real stories of real families? I leave it to you to form your own opinions, and please feel free to comment here and there. The post begins:

When a car trip gets too long, when they are stalling before bedtime, on a rainy day, my kids ask me to tell them the story “’bout when I was born.” They can recount many of the details: that William’s head was very big (they giggle every time I explain that the obstetrician had to vacuum him out) and that we had to wait and wait and wait for Marilee and that for all three of them I got medicine to make me feel better when we went to the hospital. They know that their dad and I spent three hours getting Penny’s nursery ready before I called the doctor. But for a while, when I told Penny’s story, I left out one crucial detail. I didn’t tell her what happened two hours after she was born, when a nurse called my husband out of the room and he returned with wet eyes and a sentence I couldn’t comprehend: “They think Penny has Down syndrome.”

Earlier this year Penny and I were alone as I retold the story again, and I decided it was time to let her know that the day of her birth hadn’t been all rejoicing and ecstasy. I got to the end of the familiar narrative and I added, “After you were born, I was scared, because the doctors told us you had Down syndrome.”

She cocked her head to the side. “Why you were scared, Mom?”

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Asking the Wrong Questions about Down syndrome

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October 5, 2011 What I Learned From Raising A Child With Down Syndrome (So Far) on Parents.com

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