The upside of Down syndrome

Karen Gaffney has a 3.5 grade point average at Portland Community College, where she's studying to be a teacher's aide. But this should surprise no one.

She's a 1997 graduate of St. Mary's Academy and has always been a plugger. She lettered on her high school swim team and now spends her mornings at the Multnomah Athletic Club preparing to swim the English Channel on a relay team next year. That is, when she's in town. Increasingly, the 22-year-old Portlander can be found speaking across the country, and doing so with a polish that would put some public speakers to shame.

Oh, did I mention Karen Gaffney was born with Down syndrome?

Of course, people with Down syndrome aren't supposed to be able to do all that - not according to old notions and stereotypes surrounding this genetic abnormality. People with Down syndrome -individuals with the characteristic broad face, almond-shaped eyes and lower IQs- are supposed to live severely constricted lives and be a burden on their families and society.

Try telling that to Karen Gaffney, her parents, Jim and Barbara, or the many parents and disabled advocates who know that early intervention and high expectations can lead to far different lives for people with Down syndrome.

It's a message the Gaffneys want to spread, especially to parents who've learned they will have a baby with Down syndrome. They've set up The Karen Gaffney Foundation, a nonprofit organization, and put out a video on their journey and the journey of others who've faced this challenge.

Jim Gaffney, managing partner at the Moss-Adams accounting firm's Portland office, knows the problems of raising a Down syndrome child. He also knows that parents must ultimately make their own decision about how they'll respond to the news. But he's passionate about prospective parents of kids with Down syndrome receiving "good data." And he's convinced they too often hear about Down syndrome's downside from those in the genetics counseling business. "Our purpose when we go around is not to give a map for all these people," Jim Gaffney says, "It's just to dispel the bad data."

Karen is the embodiment of Down syndrome's upside, but her dad knows about the fears parents of Down syndrome children face. Two nights after she was born, he returned to his empty home. "I cried for the first and last time out of fear from whatever Down syndrome might bring," he says. "The tears I have shed since that day have been those of a proud father - not just because she accomplished the things she was never supposed to be able to attempt but because I have learned about life in the process."

The going wasn't easy. Karen's hips required serial surgeries and body casts as a kid. That's how she spent her early summers so she'd be ready or nearly ready for school in the fall.

The Gaffneys used swimming to help Karen cope with her hip problems, and it paid physical and psychological dividends. She was good at it early on; other parents told thier kids to follow Karen's example in the pool. And the other kids? "They wished they could do the same thing I did, "Karen says.

She swam competitively - first in the Special Olympics and finally at St. Mary's. "A victory for me was just to swim a good race," she says at her talks. "I wish I could have won a race at this level, but I had already won by just being included with the others."

Neither the athletics nor the academics at St. Mary's came easy for Karen. And she needed help at both - from teammates who listened for her event to be called (she couldn't swim with her hearing aid) or helped her mount the starting blocks to her parents who helped with homework each night. "I had to work hard to keep up with the other students in class, and I still do at community college," Karen says.

Was this a burden to the Gaffneys? After all, they lead busy corporate lives. Barbara is a successful high-tech executive. "It hasn't been onerous for us," Jim says, "It's a coin toss whether it's been harder to raise Karen or Brian."

Brian's the Gaffney's child without Down syndrome. He's Karen's younger brother and a student at the University of Portland. Karen was the one who taught him to tie his shoes.

What raising Karen has done, says Jim Gaffney, is put things in perspective: "The child becomes the teacher" - and not just on how to tie shoes.

In fact, it's impossible to be around Karen and not come away with some lessons learned and a healthier perspective about life and the human spirit. "This woman is more poised and put together than most people you know - I've never seen anything like it," Gail McCormick says. "How could you not find her an inspiration?"

The 43-year-old McCormick is a member of Karen's relay team that will try to swim the English Channel next July. Team Gaffney's goal is to raise funds for the Karen Gaffney Foundation (www.karengaffneyfoundation.com) and promote full inclusion and high expectations for people with Down's.

But Team Gaffney's about more than people with Down syndrome. It's about all people, disabled and abled alike. "We are all people first," Karen Gaffney told me one day after a practice.

And her motto probably applies to most folks who must overcome handicaps - whether those handicaps are on the outside or inside, which no doubt includes all of us. It runs: "Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day, 'I will try again tomorrow.' "

© The Karen Gaffney Foundation. All Rights Reserved.
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