Down Syndrome Families Brought Into Sharp Focus
Sunday, September 14, 2008
They spend more time in doctors' offices than most parents. They endure stares from strangers but feel as if they and their children are invisible. They often find themselves fighting for their kids, not just raising them. Earlier, and perhaps more dramatically, they wrestle with the complex emotions that come from knowing that a child might never fulfill the lofty dreams that a parent often envisions before the child's birth.
But the parents of children who have Down syndrome say that raising a child with a disability can also unlock profound and uplifting truths about themselves, their children and the value of life in ways that others could never see.
Suddenly, people are looking.
Since Alaska Gov. Sarah Palin entered the vice presidential race as Sen. John McCain's GOP running mate, 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. Her decision to give birth to her son Trig, despite a prenatal diagnosis of his Down syndrome, also underscored to some people her antiabortion stance.
The attention on Palin and her family has spilled over to people such as Adrianne Pedlikin, a Vienna mother of three, including a 10-year-old son who has Down syndrome.
"People keep asking me, 'So what do you think?' I keep saying, 'What is it exactly you want my opinion about?' '' Pedlikin said. "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 Pedlikin and her husband, Philip, raising a boy with Down syndrome can be trying. They love their son deeply, act as forceful advocates for him and say his birth has changed their worldview in a positive way, but they acknowledge that their lives are much harder, more emotionally wrenching and often lonely.
Other parents of children with Down syndrome, although thankful that medical approaches and anti-discrimination laws have opened more possibilities for their children than before, say their children's disabilities often require more of them than other parents face. They spend a lot of time fighting with schools to include their children, despite the Americans With Disabilities Education 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, that there is now this law in place that allows my son access, as any other child, to education, to shared experiences with his classmates," said Donna Martinez, 56, of Clifton, a project director at George Washington University Health Research Center whose 22-year-old son, Andy, has Down syndrome.
Many parents also talk about how the phone never rings with invitations for a play date for their children or an offer to help carpool. Sometimes, they find themselves answering people who suggest that their child should never have been born.
That happened to Tia Marsili, 49, of Vienna while driving from her hometown in western Pennsylvania to Virginia Beach with her sister. The trip lasted six hours and was not without some fussing from Marsili's daughters, Sheridan and Skye. Both girls have Down syndrome. Sheridan's condition had come as a surprise after birth, but Marsili knew from prenatal testing that Skye would have Down syndrome.
"My sister looked at me and said, 'Why didn't you abort her?' " Marsili recalled. "I said, 'What? Because we love her, and she's my baby, and we love her!' 'But you knew,' my sister said. . . . It was pretty shocking. Even people that close to me."
Parents say they have learned to see beyond the obvious, to resist early assumptions about someone's abilities or potential, and to be less quick to judge another person's worth. Often they talk about the way their children's successes, pleasures and joys have a way of carrying far beyond themselves to others in unexpected ways.
"All your children have value. All your children have worth. All your children should have the right to high expectations," Martinez said. "There is work and effort that is required sometimes. Sometimes you have to be -- I am reluctant to use [Palin's] pit bull analogy, [because] it doesn't always work -- but there needs to be a conversation. He's no different. It's just a different skill set. Disability is just another form of diversity."
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For the Pedlikins, the journey with Ethan has been tricky from the moment a sense of alarm, even panic, swept over the doctors and nurses in the delivery room.
Books piled up as they traced the biological origins of their son's condition and mapped his future care. Round after round of visits with doctors and therapists followed, including the first of six operations on Ethan's ears. Government agencies stepped in, offering help in a welter of acronyms and programs. Early developmental milestones -- rolling, crawling, walking and talking -- lagged compared with other children. Just this summer, the family succeeded in toilet-training Ethan, who will be 10 next month. Until then, nothing -- strategies of behavioral therapists, covering the house with plastic sheeting -- seemed to work.
"It was frustrating, not to mention expensive, to be diapering a child until he was almost 10 years old," Philip Pedlikin said. Even now, because Ethan's coordination is not so good, someone often has to clean up the bathroom afterward. But like so many other things, the family has dealt with their son's difficulties with a mix of patience and humor.
"A good day is a day when I don't have to pull out my steam cleaner, and if I have to pull out my steam cleaner, at least my rugs are clean now. That was my philosophy for a while," Adrianne Pedlikin said.
All Down syndrome children have intellectual disabilities, but the range varies greatly.
For Ethan, there is a disconcerting unevenness of abilities. He can program the TV to tape a program and boot up the computer to play games or visit such sites as Nickelodeon.com.
After school Thursday, he snapped on the computer, closed his mother's e-mail program and booted up a DVD of "The Wiggles." Leaning over the desk, he watched intently, replaying over and over the same snippets of a song. Occasionally, he got up and danced, and he dragged his mother over to join him. But after he finished, he shoved the DVD under a heavy piece of furniture, forcing him to ask for help to retrieve it and ruining the DVD with scratches.
"So he knows he can't use them, and he knows it scratches them up, but he can't stop himself from sticking it underneath there," Adrianne Pedlikin said.
Ethan also needs help getting dressed, speaks with difficulty and cannot converse. He needs help fastening his seat belt but seems to know how to direct his mother to one of his favorite spots: the drive-up window at McDonald's, where he always gets a juice box.
"In his own quiet way, he makes miracles every day," his mother said. "He drives you on. He loves to give hugs."