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Katie is a delightful teenager with a huge imagination and even bigger heart. We think you are awesome Katie!!
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Teen's blindness revealing a new world Park City teen has a degenerative disease without a cure
By Julia Lyon
The Salt Lake Tribune
Posted: 02/01/2009
Park City » Entranced by the love triangle between a girl, a vampire and a werewolf, Katie Colton held the final book in the "Twilight" series up to her nose last summer, fighting headaches as she raced to the end. When the movie premiered a few months later, she could barely distinguish a fang from a furry face.
Because of the unpredictability of her eye disease, Katie's world was disappearing faster than anyone expected. "We thought we had longer," said Katie's mom, Denise Colton.
In the seven years since they learned of Katie's encroaching blindness, her parents have been determined that her fading vision will not dim her future.
Katie's father, Rick, is an engineer, the kind of guy who assembles toys and repairs broken furniture. "To not be able to fix this bothered me," he said.
To help Katie, he took a job that was both a personal sacrifice and a career opportunity: Every 28 days, he flies across 12 time zones to Tengiz, Kazakhstan, to supervise engineers at a Chevron oil operation, its crown jewel. While he's there, he works six 12-hour days and six hours on Sundays each week.
The job's significantly higher salary makes it possible for Denise Colton to work part-time as a child psychologist and invest more time in helping their daughter. With the help of his abundant frequent flier miles, she's met experts to review Katie's needs. She's battled school officials for better technology, such as a mobile camera that can magnify everything from a worksheet to a frog in biology class. The result is a blind teenage girl who perceives few barriers to her future. Katie, 16, wants to study meteorology at the University of Oklahoma.
"It could boggle your mind," she said, "how much I know about tornadoes."
Make a stand » The first sign that something was wrong came in 2001, when Katie failed a vision exam. Denise and Rick, who both started wearing glasses as young children, assumed there was a simple fix. But the eye doctor couldn't correct the problem.
In February 2002, doctors finally made the diagnosis: Stargardt, a degenerative disease without a cure. Katie, who was 9, remembers crying that night alone in her room.
People with Stargardt see the world as if there was a fist obscuring the center of their vision. Objects to the sides are visible, although not necessarily clear. How large that central spot grows depends on the person.
At first, the Coltons imagined the worst. "What scares us the most is the unemployment rate," Denise Colton said. "We don't want our kid on welfare."
About 70 percent of
blind people are unemployed, according to the National Federation of the Blind. In the years after Katie's diagnosis, the Utah Schools for the Deaf and the Blind disagreed with the Coltons on how much emphasis should be placed on Katie learning Braille while she could still read text, the parents said. Eventually, the family took out a second mortgage on their home to help pay for lawyers."We'd had to argue a wait-to-fail model is not appropriate for a progressive disorder," said Denise Colton, who previously worked for the Park City School District as a school psychologist. She has seen her daughter's services greatly improve since Katie's diagnosis seven years ago. "I believed it was important to make a stand not just for our child but other children who did not have the resources we did."
The Braille debate » Years passed before adequate time and technology were invested in Braille instruction for Katie, Denise Colton said. Those lost years mean her fingers need to move faster every day; most blind Americans who work use Braille.
Kristen Cox, perhaps the most prominent role model for blind Utahns, believes there needs to be a philosophical switch in schools in regard to Braille.
Today, Cox is the head of the state Department of Workforce Services. Diagnosed with Stargardt at 11, she struggled to read print by her final years of high school. In college, she had "readers" to verbalize her textbooks and memorized ideas during lectures, rather than taking notes. She did not start learning Braille until age 26, after the birth of her first child, because she wanted to be able to read stories to her children.
"I wish that I had learned it when I was young," she said. "There's kind of this thinking out there which is if you have some vision, you use that vision."
As Katie's vision deteriorated, her family attended National Federation of the Blind conferences, discovering a network of blind Americans with professional careers and adaptive technology. They also saw the other extreme: blind people dependent on the government.
The family learned that computers and cell phones can be made to speak. Books and blackboards can be supermagnified with a variety of tools. At Park City High School, Katie has used a magnifier to supersize her textbooks.
Still, as the potential for massive budget cuts loom in Utah, the Coltons are one of many worried families with children in special-education programs. A Braille geometry book Katie needed in January cost the district $3,400. Advocates fear that decreased funding could lead to inequities and incomplete services.
"I know my rights," said Marla Palmer, who is president of Utah Parents of Blind Children. "So my concern is for parents who aren't as educated or who aren't as aware of specific laws."
Members of the Utah chapter of the National Federation of the Blind will meet with Gov. Jon Huntsman Jr. on Monday to share their concerns about the performance of the Utah Schools for the Deaf and the Blind.
But the school defends its work. "If you look at the children we have compared to their disability and [learning] goals, we are exceptional," said Kimberley Smale, a school spokeswoman.
Internal vision grows » Over the years, Katie's parents' faces have grown less distinct and are now almost unrecognizable to her.
Reading text messages on a cell phone requires a magnifier. The big yellow flashing lights are the key to finding the morning school bus. And the computer, even with a supermagnifying tool, is almost impossible to read.
Katie's favorite tree at the Festival of Trees a few weeks ago was decorated with white starfish and shimmering aqua, lime-green and rust-orange bulbs.
"Everything from that white branch and up is gone," the teen said, referring to most of the tree. "It's just like a cloud of color. It's always mainly purple."
Katie volunteered that night with her mentor, Cheralyn Creer, a blind woman who is a former blindness specialist at the state Office of Education. Until Katie met Creer, three years after her diagnosis, Katie believed no one else in the world was like her.
"If you're not around blind people," Creer said. "… you don't see what other people are accomplishing and you kind of give into society's misconceptions of what blindness means: that it's a pitiful situation."
Today, Katie is optimistic. "For me it takes up too much energy to be sad," the teen said. "I look at everything as a challenge or something interesting I can accomplish."
Now her world is irrevocably shifting as she moves from being a visual learner to being a tactual one. Last fall, Katie practiced reading Braille aloud at school, sounding like a younger child, pausing between words. As her fingertips brushed forward, she kept improving, cutting a minute off her time with each attempt.
Katie recently told Creer that her vision loss has brought blessings: The less she can see, the stronger her internal vision grows. She knows how it looks when a vampire rescues a girl -- even when she can't see the movie screen.
"My imagination," Katie said. "It helps me stay happy."
1 comment:
What a great story that was done! I really enjoyed reading this!
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