David M. Perry: Let's change our focus regarding Down syndrome

I love seeing Trig Palin's beautiful face on my television. He brings sweetness to an otherwise harsh political season. As a father of a boy with Down syndrome, I hoped that Trig's sudden appearance in the national limelight might bring hope both to families like mine and especially to those just learning that their future child has Down syndrome. But it hasn't turned out that way.

We all know the story of Trig's mother, how in her 40s, she received a prenatal diagnosis of Down syndrome and chose to continue her pregnancy. A lot of people don't make that choice. Right now, 80 to 90 percent of those who learn that their unborn child has Down syndrome terminate the pregnancy. This percentage is shocking. It shows that this isn't a political or religious issue -- it shows that people, all kinds of people, are afraid.

I understand those fears. When our nurse-midwife said "Down syndrome" to me, my thoughts spun into despair and confusion. My mind raced with dark questions about his quality of life, our quality of life, consequences for future children and much more. Then I had to tell my wife. I can't imagine living in that state of unhappy confusion for months, waiting for my special-needs child to be born. Thankfully, we didn't have to. An hour after the diagnosis, our tears had stopped and we had a baby to feed, clean and love. He lifted us out of that darkness and now fills our life with more joy than we ever imagined. But I've never forgotten our first hour, and I think I know how to help people facing those same fears.

Like my son, Trig helps naturally. His sweet face counters the fear that comes from the dreadful diagnosis, but more is needed than great photo ops. Expectant parents need to know that, while raising a child with Down syndrome is challenging, the rewards are tremendous, and support can be found. But this isn't how Trig has been talked about since his mother was nominated. Instead, the conversation has focused on that singular moment when she chose not to have an abortion. That moment may demonstrate Sarah Palin's courage, her faith and her commitment to the prolife movement, but it doesn't help Trig, it doesn't help my family and, most of all, it doesn't help other expectant parents.

Choosing life is not about what happens in utero, but about what follows. Choosing life is about knowledge. It's about training doctors and nurses how to talk to expectant parents. Most of all, it's about providing an antidote to fear by changing the perception of disability. That's where Trig's voice, even before he learns to talk, needs to be heard. But his voice is being drowned out by the partisan hubbub of people from both parties who are focused on the single issue of abortion. Let's change, or at least expand, the message.

What I want is a serious national conversation about raising children with disabilities -- the way that government, schools, churches, doctors, HMOs, and most of all friends and families can help us. My wife, son and I belong to three or four support groups, have four early intervention therapies a week in our home, go to a weekly group therapy and are about to start aquatic therapy. We have four doctors and will probably have more before too long. We've got thousands of challenges ahead of us -- but what parent doesn't? Let's talk about the federal mandates that order, but do not fund, early intervention. Let's talk about universal health care and special education. Let's talk about how to help our children find meaningful lives as adults. Most of all, let's talk about ways to ensure that everyone sees people with Down syndrome as, first and foremost, just people. Then we can get to work on the syndrome.

David M. Perry, formerly of Macalester College in St. Paul, is an assistant professor of history at Dominican University in River Forest, Ill. His 2-year old son, Nicholas, has Down syndrome.