EMERGING FROM THE SHADOWS

By Gordon D. Fiedler, Jr.

The Salina Journal, July 25, 2004

Submitted by Georgia Layton

Anna Hindman came home one late-summer day in 2000 when South Middle School emptied early because of the heat. The afternoon was awash in sunlight, and when she stepped through the door, she had to pause so her eyes could adjust. She and her parents didn’t recognize this natural reaction for the omen that it was: a sign that Anna, a healthy eighth-grader with perfect vision, was going blind.

“My mom noticed I couldn’t see from coming from outside,” Anna said. “It was real bright, and inside it was real dark.”

Her mother, Ruth, who operates a child-care facility in her home, was the first to suspect something was wrong with her daughter. She would come in and go to her room or come in and go downstairs until the kids got up (from their naps). She kept tripping on stuff, and she almost stepped right on somebody on a mat,” Ruth Hindman said. She was looking ahead, and she couldn’t see where her feet were going. She had to stand there and wait for her eyes to adjust. Then, after a while, she could see more.”

“There was one time they hadn’t turned the lights on yet but the bell had rung,” Anna recalled. My best friend, she was helping me get to my locker. (Students) told us we were gay because she took my arm.

“Anna thought everybody else could see like she did,” her mom said. “She didn’t know she had a problem for a while.” It couldn’t be her eyes, Anna reasoned. After all, she still could read the school eye chart. She still could see. She could see because her central vision was relatively intact. It was her peripheral vision that was eroding.

After a visit to Anna’s eye doctor, the Hindmans learned the truth. David Lewerenz, a Salina optometrist, who saw her when she was a child, detected the abnormality. “Her vision was perfect, Lewerenz said of those earlier exams. “Then I didn’t see her again until she was 14, which was in August of 2001. At that point, it was obvious that she had some problems. Her distance vision was a little bit worse, and she was having some trouble with some small print, but mostly it was her mobility, and her side vision and her vision in the dark.”

The diagnosis was retinitis pigmentosa – a hereditary, incurable, progressive deterioration of the retina. Lewerenz said that in typical cases, the peripheral retina deteriorates first, usually the midperiphery. The next to go, he said, is the far periphery. “Some people hang onto their central vision their whole lives, but other people lose that, too, in which case they end up totally blind,” Lewerenz said. Anna has an island of functional retina surrounded by a whole periphery that is nonfunctioning, Lewerenz explained. “The vision in the center is still there because of the functioning retina in the center,” he said.

Leslie and Ruth Hindman adopted Anna when she was an infant and knew little of her medical history. “When we got her out of the hospital, they ran tests and she was a normal baby and everything looked fine,” Leslie Hindman said. Leslie Hindman said he’s never heard of retinitis pigmentosa nor knew of its seriousness, but words from Lewerenz made him understand how life-altering the disease was going to be for Anna. “When (Lewerenz) writes down a name and phone number on a slip of paper and folds it up and sticks it in your pocket and says these are who you need to call, and you get home and open it up and see Kansas State School for the Blind and an 800 number, it was like somebody taking a shotgun and going POW!” he said.

The news seemed to hit the parents harder than the child. “Anna has accepted it better than I have,” Leslie Hindman said. “There were a few rough days when she would come up to me and ask, ‘WHY?’ (But) Anna has accepted it real well.”

When Anna first learned of her disease, she was crushed for a typical teen-age reason. “The biggest thing that bothered me was, I was, almost 14 when we found out, and I was looking forward to getting my learner’s permit, and I was really upset I couldn’t drive, I will never be able to drive.” For now, her vision has stabilized, but there are no assurances it won’t deteriorate further. What is known is that it won’t get better. “I was hoping it would go away, (but) there’s no cure for it,” she said. So far, it hasn’t gotten any worse, but I’m learning braille just in case it does get worse.”

“We don’t know how far this will go,” Ruth Hindman said. “She may completely lose her eyesight. That’s why she needs to learn braille now while somebody will work with her. Once she gets out (of school), that’s it.”

Anna is getting the feel of the distinctive raised dots at the Kansas State School for the Blind in Kansas City, a facility she didn’t know existed before her sight began to fail. At the time, she was being home schooled. She passed her freshman and sophomore years at home, which Anna said was welcome after the torment she endured in middle school. “I’d been made fun of so much because I was short,” Anna said. “I’m almost 4-10, but everyone else was almost a foot taller than me. Boys would call me retard. I stumbled around. I had to pull my book bag because my doctor thought I had scoliosis. I was kinda dorky, and I didn’t dress up to what everyone else dressed like, so I guess they thought I was too different.” But the idea of another school, in a big city, at first was intimidating. However, the staff and students won her over. She’s not only surviving; she’s thriving. The giggly, gregarious little dynamo is an honor student and a cheerleader and earned a letter as a member of the school’s forensics team, which last month returned with a first-place trophy among 12 schools for the blind competing in a regional contest in Minnesota. She also was awarded a medal for Most Improved Athlete and was named Princess of the school’s prom.

“She’s really blossomed there,” Lewerenz said. She’s a lot more

Independent. She’s a lot more positive since she’s been going to school there. She’s had a very, very good experience.

After seeing her flower at the school, Leslie Hindman said he wished he would have called sooner. “I was afraid to. You don’t know what you’re getting into,” he confessed. “The people there are fantastic.” He gives Lewerenz high marks as well. “If it hadn’t been for David Lewerenz, I don’t know what I’d have done,” he said. “He helped us a lot with resources. He has been very caring, even when he was gone for a year on sabbatical. He kept in contact with Anna and wanted to know how she was doing.”

For now, Anna can read, even tiny printing that would have most adults fumbling for their glasses, if the letters are of very high contrast. Lewerenz said that is common among RP sufferers. “If you were to be in a well-lit room with Anna, and Anna was just standing in one spot and you were talking to her, you might not even know anything was wrong because her eyes look normal,” Lewerenz said. She can look you squarely in the eye when she’s talking to you. She can even do some limited reading. But if she were to become mobile, you would notice she was being very cautious because her peripheral vision is bad. “Then, if you dim the lights even a little bit in the room, you’d notice mobility was possible for her only if she uses the sense of touch. Her vision is drastically reduced in the dark.” And the room doesn’t have to be black as pitch. An environment illumined enough to produce grayish shadows will stop her in her tracks. But flooding an area with light won’t help her much if objects are of neutral hues.

“When I serve food at home,” Ruth Hindman said, if it’s light like noodles with Alfredo sauce, but it’s on a white plate, she can’t see it.” Restaurants can produce similar vanishing acts with their food presentation. “The sizzling stir-fry at Applebee’s is on a black fryer. I can’t see the beef or the rice because it’s got the sauce on it and it’s all dark,” Anna said.

During the academic year, she boards at the school, which was founded in 1867 as the Blind Asylum and comes home on the weekends. “It’s different from being at home with my family, because I’m growing before I go to college,” Anna said. “I’m living in a dorm and cooking and cleaning before I’m really ready to, but I’ve got to learn all that before I get out on my own.” Anna will be a senior this fall and may return in 2005 as a second-year senior. “You have the opportunity to attend college classes, and some kids start working so they get an idea of the work force before they get out on their own,” she said.

“They have an apartment program (where) you can practice paying bills and buying your own food.” That’s all part of the curriculum,” Principal Madeleine Burkindine said. The school accepts children as young as 3, although seldom, if ever these days, will a student that young stay at the school through graduation. “We want to get the students back to their own districts, but we want to send them back so they’ll be successful,” Burkindine said. Success is measured in more ways than academics. The school offers vocational, and orientation and mobility training.

Students are taught the use of canes and are instructed in the rules of handicapped accessibility, Burkindine said. “We want students to be able to advocate (for) themselves and not rely on someone else to do that,” she said. “Self-advocacy is something we teach in our social-skills classes.”

At first glance, the school looks like any other educational institution. In the halls, atop display cases, an array of trophies boast student prowess in track, bowling, and wrestling. One of the science rooms holds equipment and specimens one would expect to find in any high school, including a headless human skeleton standing knee-deep in a waste basket by the door. Except in this school, the faux bones share space with white canes. And the books in the library and on the shelves of Cheryl Love’s social studies classroom each appears thick enough to contain the entire federal code. Braille fattens printed pages. “It takes a lot of time and patience to learn braille,” said Love, one of Anna’s teachers. Love was required to learn braille as a condition of employment at the school. …

As in regular schools, not all blind students learn the same. “Strange as it may sound, some of these kids are visual learners,” Love said. “The low-vision group who are losing their vision learn best by using their eyes.” Others may prefer auditory or tactile instruction, she said. Students with no vision must become proficient in braille. Burkindine said the goal is for students to read more than 100 words a minute.

The state-funded school operates directly under the Kansas State Board of Education. Except for yearbook and other fees and a one-time evaluation that can cost as much as $300, students pay no tuition. Some students attend for one brief or extended stay, while others may return from time to time. “Sometimes they will come here for a period of time to get immersed in braille so they can keep up with their peers, and they’ll go back to their own school,” Burkindine said. “And then maybe they’ll come back later to work on certain vocational skills and experiences to prepare for that transition, or they’ll come back for their second senior year.”

The enrollment is small – about 60 students from elementary through high school – so it can’t provide the plethora of electives found in larger institutions. “We can’t offer a large gamut of classes,” Burkindine said. So students who need a foreign language go off to another school to get that.” Anna attends some classes at Bishop Ward High School. But even leaving the campus for a few hours a day provides the School for the Blind an opportunity for instruction. “We sent (Anna) with an orientation and mobility teacher to work with her to get around, to get an idea in her mind how the building’s laid out and how the numbering system works in buildings,” Burkindine said.

Anna was preparing to spend two more years in Kansas City, but that was before she attended a career education program called VIEWS this summered in Topeka. VIEWS (stands) for visually impaired experience work success. Is a partnership between the Kansas State School for the Blind and the Kansas Rehabilitation Center for the Blind and Visually Impaired.

The eight-day program prepares visually impaired young adults for the job market. “They taught us how to do job interviews and apply for a job, where to look if we need to get a job,” Anna said. “They also helped us with daily living skills and mobility.” After completing the program, Anna landed a job as an aide with the local Head Start program at the former Kennedy Elementary School. … She’s undecided on a college major; but her experience in Topeka opened doors to more immediate possibilities. “I’m debating whether to do the second-year senior program at Kansas School for the Blind or graduate from Kansas City and go to Washburn,” Anna said. Then after a pause: “I might do both.”