The new face of the Down-syndrome family. Becker reads to her daughter Penny, who has Down syndrome, and her son. Becker's book is about raising a child with the condition.
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But termination after a positive test often seems the default expectation, says Howard, who declined testing because Lydia had been conceived via in vitro fertilization, and she didn't want to risk a miscarriage. "There was encouragement to get the testing with the understanding that I would terminate," Howard recalls. Even McLaughlin admits that she sometimes questions what she'd have done if she'd taken the Sequenom test and learned about Gracie's diagnosis earlier than she did. "Will more people terminate because it's earlier in the pregnancy and why not just try again?" she asks. "I don't know what I would have done if I had found out at 10 weeks."
That's what scares so many parents and professionals. If more terminations lead to a reduction of services for babies with Down syndrome, the gains of the past could be lost, with things returning to the way they were 40 years ago, when children with Down syndrome were rarely mainstreamed into schools and were often institutionalized. That would be bad under any circumstances, but it would be particularly cruel if it happened now, just at the point that the achievements--and the acceptance--of people with Down syndrome have been soaring. Ryan Langston, a blond cutie-pie with Down syndrome, has been featured in advertisements for Target and Nordstrom. Actress Lauren Potter, who also has Down syndrome, plays a cheerleader on the hit TV show Glee. "There is a disconnect between hospitals, administrators and doctors' understanding of what has changed for children with Down syndrome over the years," says Howard.
McLaughlin, for her part, has made significant strides since the day she gave birth to Gracie but couldn't look at her. She now serves as a peer mentor for the Massachusetts Down Syndrome Congress's Parent's First Call program--the same place she turned after Gracie's prenatal diagnosis. In that role, McLaughlin is trained to remain "very neutral," says Maureen Gallagher, executive director of the congress. "We respect people's right to choose."
So McLaughlin tells the people who come to see her the truth--the good and the bad, the joyous and the challenging.
Any parent raising any child will have the same range of experiences, albeit in different ways. It's that very possibility of ordinariness, though, that may best capture the new world of the Down-syndrome child.