A Bright but Welcome Spotlight
Sunday, September 14, 2008
They spend more time in doctors' offices than most parents. They endure strangers' stares but feel as though they and their children are invisible. They often must fight for their kids, not just raise them.
At first, they wrestle with the complex emotions that come from knowing a child might never fulfill the lofty dreams that a parent envisions before the child's birth.
But the parents of children who have Down syndrome say raising a child with a disability also can unlock profound and joyful truths about themselves, their children and the value of life in ways others could never see.
With the emergence of Alaska Gov. Sarah Palin on the national political scene, suddenly people are looking.
Since Palin became Sen. John McCain's vice presidential candidate, she has been making the case that she can run a government and a family with children, including a 5-month-old son with Down syndrome. For some, the birth of her son Trig in April underscored her antiabortion beliefs.
The focus on Palin and her family also has brought unexpected attention to the difficulties and joys of other families whose children have Down syndrome, and many of these parents say they welcome it.
"People keep asking me, 'So what do you think?' I keep saying, 'What is it exactly you want my opinion about?' '' said Adrianne Pedlikin, of Vienna, whose three children include a son with Down syndrome. "People are paying much more attention to us. . . . Before, kids would stare, but not adults. Everybody's curious: 'What's it like to have a kid with Down syndrome?' "
For Adrianne and her husband, Philip, raising Ethan, who will be 10 in October, can be trying. Their love for him is obvious, and they often talk about how his life has reshaped their worldview in a positive way, but they acknowledge that their lives are much harder, more emotionally wrenching and sometimes lonely.
Other parents, although thankful that medical care and anti-discrimination laws have facilitated longer lives and more opportunities for their children than ever before, say their children's disabilities require more of them than other parents face. They spend a lot of time fighting for their children's inclusion, despite the Americans With Disabilities Act. They constantly push back against the low expectations people have for their children.
"There have been times I have had to go nose to nose and toe to toe, literally and figuratively, with not only principals, but even as far as assistant superintendents," said Donna Martinez, a resident of Clifton whose 22-year-old son has Down syndrome.
Other parents say the phone seldom rings with a play date or carpool invitation. Some parents, like Tia Marsili, find themselves answering people who suggest their children should never have been born.
Marsili, 49, of Vienna, was driving from western Pennsylvania to Virginia Beach with a close relative. The six-hour trip was not without fussing from Marsili's daughters, Sheridan, now 14, and Skye, 8. Both have Down syndrome: Sheridan's condition came as a surprise after birth, but Marsili knew in advance about Skye's disability because of screening.