Down Syndrome Spokeswoman Stays In the Swim
By Julie Peterson
When Karen Gaffney was a little girl, she started swimming before she could walk.
She was so good at it, in fact, that in swimming races at the age of 4, she'd let other kids start first, then jump in, catch up and pass them.
Now 23 years old, Gaffney will graduate from college in Portland in June and plans to travel to England this summer to swim the English Channel in a relay team she formed with 11 friends.
What makes her accomplishments extroadinary is that she has Down syndrome.
She will speak in Yakima on Friday, telling others about her experiences growing up with the genetic condition, and how early intervention programs can help children with disabilities. She will also talk about her goal of educating people about the importance of including people with disabilities in all areas of life.
"My main message, I tell people, is about my experience, about what it is like to be someone who has Down syndrome and the hardships I faced with that," she said in a telephone interview from Denver, where she was student -teaching last week at an elementary school where her aunt is a teacher. "I also share that I had a lot of positive things, like family members who are very supportive, and my swimming and Special Olympics.
Down syndrome is a genetic condition in which an extra chromosome appears, instead of the usual 23 pairs. The extra genetic material affects how a person develops and causes physical characteristics such as low muscle tone, an upward slant to the eyes, and a flat facial profile. Most children with Down syndrome also have mild to moderate mental retardation, according to the National Down Syndrome Society.
Gaffney formed the Karen Gaffney Foundation three years ago. She speaks to groups around the country about her disability, and how she's worked to overcome many of the obstacles facing people with Down syndrome.
"I want to call attention to the capabilities of people with disabilities including Down syndrome," she said. "My foundation is dedicated to full inclusion for people with Down syndrome and others with disabilities in school, families, the workplace and the community.
When Gaffney was born in Mountain View, California, her parents discovered she had Down syndrome, her mother Barbara Gaffney said.
At the time of the birth, 1977, early intervention programs for parents to learn how to help a disabled child were rare, but Mountain View, had one she said.
By learning about the child's extra needs for physical therapy and mental stimulation, the parents helped her with exercises, toys, and other educational tools.
It also proved to them they could involve her in regular schooling.
"You never know, when a child is born with the normal set of chromosomes, what their potential is going to be," her mother said. "When a child is born with Down syndrome, you don't know what the impact of the extra chromosome will be. The best you can do is work as hard as you can to mitigate that."
During the 1980's, it was difficult to convince many public schools to include children like Gaffney in regular classes after the fourth grade, so her parents enrolled her in private schools.
"As parents, we need to work with the schools to think outside the box to create an inclusive environment," she said. "With a watered-down curriculum, it's not learning. All kids should have the same opportunity to love or hate geometry and Shakespeare in the same way you and I have."
Public schools are improving at including kids in regular classrooms instead of self-contained special-education rooms, she said.
Gaffney not only graduated from high school, she went on to complete studies at Portland Community College. She will graduate with an associate's degree and a certificate to be a teacher's aide in June, and hopes to get a job in an early-intervention program.
She plans to swim across the English Channel in July with a team of 11 others who named themselves "Team Gaffney." The goal is to raise money for a video Gaffney wants to make about Down syndrome.
She already hosted a video, which is shown to parents expecting a baby with Down syndrome, to educate them about what to expect and emphasizing the positives and potential of children who are born with the condition.
About 40 percent of people with Down syndrome are born with heart problems, and are at a somewhat higher risk for other problems including chronic upper respiratory problems and in some cases, leukemia.
Later in life, they can develop an Alzheimer's-like dementia, said Susie Ball, a certified genetic counselor who works at Yakima Valley Memorial Hospital and Children's Village.
Because they have less muscle tone, people with Down syndrome can develop problems with dislocating joints and must exercise to help maintain healthy muscles, Ball said.
For Gaffney, swimming helped her recover from several surgeries on her dislocated hips. She had to learn to walk again after each of the surgeries since she was 4 years old, her mother said.
Her accomplishments at swimming also helped build her capacity for oxygen, which helped her stay alert in school.
"Kids like Karen have to work harder to understand what's going on around them," her mother said. "It was also a great equalizer for her. When she got in the pool, she was doing something many other kids couldn't do. She could hear parents say "Watch what Karen's doing."
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