Embracing An Unexpected Challenge

By Katy Muldoon, The Oregonian

Karen Gaffney was a water baby.  Her father saw to that.

When his daughter was 9 months old, Jim Gaffney blew in her face until she held her breath.  Her lips locked, he'd gently dunk Karen in their warm backyard pool.  The lesson: breath control.

Jim Gaffney never dreamed that the same blond baby, now 23, would be part of a relay team poised to swim the English Channel next week.  He simply knew that exercise would improve Karen's poor muscle tone, a trait common to children born with Down syndrome, as his child was.

So they swam, dad and daughter.   First at home in Sunnyvale, Calif.  Then, after they moved to Portland when Karen was 1, they found pools at an athletic club in the Mariott hotel, the West Hills Racquet and Fitness Club and the Multnomah Athletic Club.

When Karen was proficient at holding her breath, Jim Gaffney would let go of her in the deep end.  She would sink to the bottom, squat by the pull drain, push off with her feet and shoot to the surface, where her dad waited to catch her.  Soon, the lesson was a game -- the therapy, a good time.

And Karen Gaffney grew into a swimmer.

The morning after Barbara Gaffney gave birth to a beautiful, screaming, 7-pound baby girl, a doctor spoke the words that confirmed what Gaffney felt and feared in her gut: "She will be retarded," the doctor said.

Her husband, Jim, didn't know yet that his daughter was one of the 3,000 to 5,000 children born with Down syndrome each year.

From her hospital bed, Gaffney picked up the phone.  She dialed her mother in Spokane.

"Mom," she said, "we've got a problem."

"What's that?" Gaffney's mother asked.

Expecting tears and sympathy, she explained.  Gaffney remembers her late mother's words:  "That's all right,"  Dorothy Lynch said without skipping a beat.  "I can't think of a better family for a baby like this to be born into."

Barbara Gaffney, one of 11 children in a close family that values accountability and responsibility, says she learned early about obstacles.  "You find a way around them or through them," she says.  "They don't stop you."

Her husband, the oldest of seven children, the man she met while they were students at Santa Clara University, had a reaction so similar to her mother's that it sounds-23 years later-as if it still takes Barbara Gaffney's breath away.

"Jim walked in.  He could tell that I had been crying, that I was upset," Gaffney remembers.

"He asked, 'Is the baby OK?'

"When I told him, his reaction was, "We can do this.  We can raise this child.'

"There was never any shadow of lack of acceptance.  It was: 'How do we enable her to flourish?  How do we figure out how to make life as good as possible for her?'"

Jim Gaffney was a shrewd negotiator.

Standing 5 feet away, he'd ask his toddler, Karen, to push off from the swimming pool steps and glide toward him in the water.

She resisted.  He persisted.

Do it, he'd say, and I'll take you out to breakfast.  Swim farther, he'd tell her and a trip to Baskin-Robbins was in her future.

After the glide came the kick.  After the kick, the arms.  After the arms, the breathing.  Five feet gave way to 5 yards then 15, then 25.

Jim and Karen Gaffney began to hear other parents tell their children, "Watch how Karen does it.  Now you try."  And children, who ignored or scorned Karen on land because she was different, decided that in the water, this summer was a fine playmate.

Barbara Gaffney, 52, was in her 20s in 1977 when Karen was born.  Her pregnancy went smoothly and because of her youth, doctors didn't perform the prenatal testing that might have detected evidence of Down syndrome.

The condition is marked 95 percent of the time by the presence of an extra chromosome:  Most people have 46 chromosomes per cell, but those with Down syndrome usually have 47.

Identified 135 years ago by John Langdon Down, an English doctor, its cause is unkown.  Some experts suspect that genetic predisposition hormonal abnormalities, viral infections or immunologic problems may result in Down syndrome.

By some estimates, up to 90 percent of parents of parents who learn early in pregnancy that they are carrying a child with Down syndrome choose abortion.

Children born with the abnormality usually are physically smaller than those without Down syndrome.  Most function in the mild to moderate range of mental retardation, though there is wide variation not only in mental abilities, but also in how such children progress developmentally.

Until the early 1980s, the prevailing belief held that those with Down syndrome didn't have the capacity to graduate from high school, hold full-time jobs or five independently.

Now, advocates such as the Gaffneys - Karen included -- push for full inclusion in school, in the workplace and in the community. 

The fight, at times, has been like swimming against the tide.

Questions swirled through Barbara Gaffney's head: Do I go back to work? Do I not? What do we do now? How do we close the gap that sets Karen apart from other children?

Doctors tried to rein in expectations.  Karen would be lucky, they told the Gaffneys, to learn to tie her shoes.  Research, however, told them that the first three years of life are critical to brain development, and when children with Down syndrome get a head start learning, it pays off.

They enrolled their daughter in early intervention classes when she was 3 months old.  They juggled their work schedules so that three days a week, one of them would be with Karen in class.

There, specialists would teach Karen and her parents positive patterns of movement, so that poor habits wouldn't get in the way of her learning to sit or walk.  They learned that gross and fine motor skills provide the basis for cognitive learning.

By the time their daughter was ready for grade school, the Gaffneys weren't sure if a standard classroom, rather than a class especially for the disabled, would work for her.  But they wanted to try.

Karen Gaffney doesn't recall exactly how old she was - 8 or 10 -- when a schoolmate spit out the word.

"One boy walked up to me and called me a retard," she remembers.  "I didn't know what it meant."

When she asked her parents, they said that retard meant slow to learn.

"They just said, 'It's hard to deal with that kind of stuff.  Ignore it and keep going,'" she recalls.

Barbara and Jim Gaffney faced it too -- ignorance about their daughter's condition, fear of it or simply the inability to believe in Karen's potential as they did.

Early on, they determined it was crucial to find schoolteachers with greater vision.

Shortly after they moved from Northern California to Portland, the Gaffneys met Jean Edwards.  The Portland State University professor has spent 30 years researching, teaching and writing about Down syndrome.  As a child, she made friends with a neighbor born with the condition.  The friendship shaped her career and philosophy.

"When we told only the lowest expectation," Edwards says,  "we hold back the ability of others to reach their potential."

The Gaffneys let their expectations rise and insisted that others, Karen's teachers especially do the same.  They found that Karen was able to learn everything other children could, though it would take intense preparation, repetition, memorization and a seven-day-a-week homework schedule far more rigorous than that of her classmates.

"Our goal," Barbara Gaffney says, "was not to get her to 80 percent, but to get her to 120 percent -- to get her ahead of the curve."

In 1997, proud in a blue cap and gown, Karen Gaffney earned her high school diploma from St. Mary's Academy, a tough college-prep school in Portland.

There, she learned poise and public speaking, developed a taste for Jane Austen, whom she reads voraciously, and fed her long- standing appetite for musical theatre, which taps her romantic nature.  For her senior project she produced a videotape for parents who have just learned they would have a child with Down syndrome.  And, of course, she lettered in swimming.

Perhaps, with so much accomplished, Barbara Gaffney shouldn't have been surprised a couple years later when her daughter announced one evening: "Mom, a woman at the club wants to help me swim the English Channel."