Amy Julia Becker with her daughter, Penny, who has Down syndrome.
Most people with Down syndrome have what are considered mild to moderate intellectual disabilities. There is no national registry for people with Down syndrome, so there are no reliable statistics on how many affected people would be classified as “high-functioning.” For Amy Julia Becker, who has written a book about life with her daughter, Penny, who has Down syndrome, coming to terms with her daughter’s intellectual limitations has taken time. “I went to Princeton, I graduated Phi Beta Kappa, I have always been smart,” she says. “I didn’t realize how much I assumed I’d have a daughter just like me. Having Penny really challenged me to rethink what it means to be a whole and full human being.”
In her book, A Good and Perfect Gift, Becker transcribes a journal entry written soon after Penny was born: “Can she live a full life without without ever solving a quadratic equation? Without reading Dostoyevsky? I’m pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I’m pretty sure I can’t.”
But many expectant parents don’t feel that way. Up to 90% of women who know in advance of a Down syndrome diagnosis choose to end the pregnancy, according to the few studies that have tracked this. The new test is not being marketed only to women who would end a Down syndrome pregnancy, say advocates of testing. Mothers who plan to have the baby may also want to know ahead of time in order to prepare emotionally and medically; half of infants with Down syndrome, for example, are born with heart defects. “I don’t think it’s all search-and-destroy,” says Canick. “That is an awful way of looking at this.”
But parents of children with Down syndrome are skeptical of the intent of early screening. “There is a real disconnect between hospitals, administrators and OB/GYN doctors’ understanding of what has changed for children with Down syndrome over the years,” says Howard, whose daughter, Lydia, starts conversations with strangers and cracks jokes in her inclusive preschool. “There was encouragement to get screened with the understanding that I would terminate because that’s what most people do.”
It’s true that mothers who learn soon after delivery that their babies have Down syndrome describe being overwhelmed with sorrow and disbelief on what they’d presumed would a joyous day. Howard cried every day for nine months after Lydia was born. Perkins McLaughlin says it took her eight hours after her C-section to muster the nerve to go visit her daughter, Gracie, in the neonatal intensive care unit. “There are people out there who feel the test is great,” says Perkins McLaughlin. “In some ways, it is great. But it is scary too. Will more people terminate because it’s earlier in the pregnancy and why not just try again? I don’t know what I would have done if I had found out at 10 weeks.”
Gracie is now 3 1/2. In the two years since Perkins McLaughin, now 44, has served as a parent mentor for the Massachusetts Down Syndrome Congress, she’s told the dozen or so conflicted pregnant women who have contacted her that Gracie is bright: she started signing at six months and had accumulated 100 signs by age 2, prompting her grandmother to ask, Are you sure she has Down syndrome? She loves music, dancing and her older brother and sister. Perkins McLaughin tells them how Gracie has added perspective to her life, softening her Type-A edges. “She’s not going to do quantum physics, but I don’t do quantum physics,” says Perkins McLaughin. “Gracie has showed me in a profound way that I am not in control of everything. I have a bumper sticker that says, Grace Happens.”
As a parent mentor, Perkins McLaughlin is trained to remain “very neutral,” says Maureen Gallagher, executive director of the Congress. Mentors offer current information about Down syndrome, sharing that life expectancy has increased from 25 to 60 years, that early intervention and a shift in educational approaches mainstreams many kids with Down syndrome in typical classrooms, that young adults are no longer institutionalized.