A day in the life

Rachel Adams is Professor of English and American studies at Columbia University. Her most recent book is Raising Henry: A Memoir of Motherhood, Disability and Discovery, published by Yale University Press in 2013. She is the author of many academic articles, and has also published essays on parenting and disability in The New York Times, The Times of London, The Chronicle of Higher Education, Salon, and Huffington Post. When my son Henry lay on the floor in the middle of the school holiday fair and refused to budge, my heart sank. Although he was blocking the path to the food table, the other parents stepped over him, not seeming tomind verymuch. Plenty of kids were acting up, and I knew Henry was overwhelmed by the noise and chaos in the gym.His obstinacywouldn’t have botheredme somuch if itweren’t for the visitor observing our every our interaction. Our guest was Carrie, a graduate student in genetic counseling assigned to spend the afternoon with our family as part of an experiential learning program. Seeing a day in the life of Henry, who is six and has Down syndrome, was supposed to give her insight that she could use to help prospective parents better understand the meaning of genetic disability. Carrie isn’t the first genetic counseling student we have met. Since Henry’s birth, I’ve spent a lot of time around genetic counselors. They are curious to meet people with Down syndrome and their families, and I appreciate their willingness to listen and learn from us. I tell them they can ask me anything. Given their intended profession, they usually focus on my pregnancy, our choices about prenatal testing, and the kind of information and counseling we received. Behind their polite questions, I sense their curiosity about how a child like Henry came to be born to my husband and I, well-educated, successful parents with the best prenatal care at their disposal.When I’m asked, I tell themhonestly: The truth is that although I was over 35 at the time Henry was conceived, our triple screen revealed a very low likelihood of genetic disability and we saw no reason to risk a healthy pregnancy by having an amniocentesis. We didn’t learn that Henry had Down syndrome until after he was born. Because we live at a moment of increasingly routine prenatal screening, our personal decision became publicly visible. When I meet genetic counselors like Carrie, I want them to understand what’s unique about parenting a child with Down syndrome at this particular moment in history. In many ways, Henry was born at the best possible time to be a person with Down syndrome. Thanks to advances in health care and medical understanding, expectations for the quality and duration of his life have