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Another way of seeing
© St. Petersburg Times, published December 12, 1999
In the front yard waiting for the school bus, in new pink shorts, white T-shirt andElmo book bag strapped across her back, Jenny is surrounded by her own little cheering squad. Even a neighbor has walked down to see her off.
Jenny and her dad, Chuck Shields, pass some time hunting for acorns that the squirrels might have dropped overnight. Mom, Janet Shields, adjusts the straps on Jenny's book bag for the last, last time. Big sister Becky, a fifth-grader, whispers some last-minute advice. The girls giggle.
There are no other children on the row, and only one other child on board. As the bus pulls away, everyone in the yard yells "I love you, Jenny" and waves goodbye.
Jenny hears their words but she misses the hand motions. She also missed the sunrise.
Today she is leaving her safe world, where she knows every voice and how many steps it is from the bedroom to the kitchen, for a new place, where she will mingle with strangers in a land uncharted.
If people smile at her, she will not know it. If they roll their eyes when she asks for extra help, she won't know that, either.
Jenny's parents expect that she'll be teased at school. Will she be left out of class activities? How will she cope? And for the moment, more to the point, will someone be there to meet her bus? Cross Bayou Elementary is a big school, after all, and the teachers have more than enough to occupy them on the first day.
"You don't know how hard it was for us to put her on that bus," Chuck Shields says.
He wipes the mist from his eyes, slides behind the wheel of his 1987 Buick and races to school, so he will be there before his daughter arrives.
* * *
Jenny is 5. She likes pizza, vanilla ice cream and soft dresses.
She likes to snuggle on the couch when her mother reads a story, and her favorite character is Ariel, The Little Mermaid. She has a pink box filled with Little Mermaid jewelry and trinkets.
Taller than most of her classmates, her wavy, blond hair frames a freckled face and a grin that is missing an upper front baby tooth.
"Becky said to twist it until it hurt and then yank it," Jenny reported after the deed was done.
Jenny's eyes are what you notice first, powder blue, clear and wide.
Like most children who are blind, Jenny tries to vary her cloudy existence. Sometimes she squeezes her eyes shut or presses on them with her fists, which brings flashes of brightness.
In a prekindergarten class at Frontier Elementary School in Largo, a teacher passed around a picture of Jenny's dad, a broker/Realtor who is a professional clown in his spare time. When the picture reached Jenny, she pressed it against her eyes as tightly as she could.
"Oh yes," she said. "I see him."
* * *
After a 30-minute ride, Jenny's bus pulls into the circle at Cross Bayou Elementary, in Pinellas Park.
The door cranks open and Jenny steps out, bombarded by the hissing, rumbling and screeching of dozens of school buses, depositing as many as 60 jabbering children each. Andrea Schleicher, who teaches the school's visually impaired students,
"How was the bus ride?" Mrs. Schleicher shouts above the din.
"That's good. Now let's see if you can find your classroom."
Jenny positions her white cane and steps forward, oblivious to the curious stares. As she approaches, swishing her cane from side to side, children stop chattering and clear a path.
She knows that her classroom and her teacher, Mrs. Foster, will be at the spot where the concrete and the wooden sidewalks meet.
This trip from bus circle to classroom is a familiar one. Jenny visited Cross Bayou over the summer -- with her parents and with Brian Evans, one of the school district's two "mobility" instructors. Of more than 109,000 students in the entire Pinellas school system, fewer than a dozen are visually impaired enough to need to read Braille.
At Cross Bayou, the staff has known that Jenny was coming for about a year. They know that although she can't see anything, she can detect shapes and shadows. They know she has been to preschool and had special training at the Pinellas Center for the Visually Impaired.
They also know she cannot pick the green crayon out of the box or read what the teacher is writing on the board.
* * *
Jenny was a month old when Chuck and Janet Shields noticed that her eyes did not follow them when they moved about a room. Their pediatrician said not to worry: "A lot of babies are like that."
A few months later nothing had changed. This time, after shining a light in Jenny's eyes, the pediatrician abruptly left the room.
When she returned, "She asked how soon we could get over to the hospital," says Janet Shields, a commercial banker with AmSouth in Feather Sound.
An MRI at Morton Plant Hospital in Clearwater showed no brain tumor.
"At first we were pleased," Chuck Shields says. "But then reality set in. It was like, well, what the hell is wrong?"
The next appointment was with Dr. J. Bruce Hess, a pediatric ophthalmologist at All Children's Hospital in St. Petersburg. His diagnosis was Leber's Congenital Amaurosis, an inherited, incurable blindness that can result only if both parents carry the faulty gene. It is found in only one to three people in every 100,000.
Hess wanted to verify his diagnosis. A week later, in a cramped room, with tubes, scopes and boxes attached to wires and switches, Chuck Shields gripped his baby daughter on his lap while doctors from the University of South Florida placed electrodes directly on her eyes, her forehead and the back of her head.
"She was fighting to get her little hands up to her face and I was holding her back," he says. "I knew if this is what it's come to, this is not a good thing."
The tests took about half an hour. The report arrived in the mail within the week.
"The words they used were "vision extinguished,' " Chuck Shields says. "We just stared at the words until the tears came. Neither one of us could say a thing."
* * *
In 28 years of teaching, Mrs. Foster has never had a child who sees so little. In this classroom of "regular" kids, Jenny will be a challenge, she knows, one she is eager to accept.
Dad was waiting in the classroom before Jenny walked in. He bends down and puts an arm around his daughter's shoulder. "Hi, Jenny. Is everything all right?" She nods and says yes.
The bell rings and principal Marcia Stone appears on the TV monitor to welcome everyone to Cross Bayou. When the Star-Spangled Banner plays, the children stand to face the television screen. Jenny can't see it, but she knows where the sound is coming from. The Star Spangled Banner is a new tune for these kindergarteners. Only Mrs. Foster is singing.
Mrs. Foster has her pupils come up front and sit on Velcro strips in a semicircle around her.
Jenny doesn't need her cane, she knows this room. The bathroom is to her right, the bookshelves to her left, the Velcro strips straight ahead. Over the summer, Evans, the mobility instructor, helped her memorize it all. Jenny gropes until she finds an empty piece of Velcro.
The children sing, play some "get acquainted" games and listen to a story about a big red dog.
Using a flip chart, Mrs. Foster writes phrases from the story. Mrs. Schleicher, the vision specialist, moves next to Jenny with the Braille writer. Each time Mrs. Foster writes a phrase, Mrs. Schleicher copies it in Braille. When the other kids read the words on the chart back to Mrs. Foster, Jenny traces the Braille words with her fingers and reads them back to Mrs. Schleicher.
By the end of the lesson, everyone in class, including Jenny, knows at least three words -- big, red and dog. Mrs. Foster is satisfied.
* * *
Jenny's parents have been looking forward to, and at the same time dreading, the first day of kindergarten. They want Jenny to learn to trust herself and not rely on them so much. But it is hard to pull back.
"We know we can't shelter her forever," Janet Shields says.
The Shieldses are confident that Cross Bayou, which has a special program for blind students, is the best educational choice for Jenny. Though she is being mainstreamed, there are other visually impaired children at the school and a support staff trained in Braille instruction.
"We love her," Chuck Shields says. "We don't want somebody else to raise her."
In their modest home in Largo, the Shields girls share a bedroom. They have bunk beds, Jenny on the bottom, Becky on top. When Jenny gets scared at night, Becky loans her teddy bear. Jenny would like a real pet, a bunny. Becky would prefer a dog or a kitten, but dogs bump into Jenny and knock her down when she tries to pet them. A rabbit would be better.
There is no need for a cane at home because Jenny knows her way around so well. She also knows her grandmother Mildred Shields' house on Belleair Beach. She loves to spend the night and play make-believe. A new game is "school."
"Jenny is always the principal so she can make announcements in the morning," Mildred Shields says.
Mildred Shields and her late husband had polio. They relied on wheelchairs.
"I saw that their handicaps never held them back," Chuck Shields says. "I don't expect Jenny's to hold her back."
Jenny's career goal is to become a doctor or to work the drive-through window at McDonald's.
* * *
Lunch for these kindergarteners comes early. At 10:25, Mrs. Foster tells the class to line up.
"Get your cane," Mrs. Schleicher tells Jenny. On the sidewalk from the classroom to the cafeteria is a wide white line. Mrs. Foster tells the lead child to stay on the line. Though Jenny can't see the line, the bright white on the gray concrete creates a contrast she can detect.
Down the line they march, with Mrs. Foster at Jenny's side. In the cafeteria, she guides Jenny to the proper table. A doll-like little girl with long brown hair and dark eyes named Kimberly sits directly across. She watches as Jenny folds up her cane.
"What do you need that for?" Kimberly asks.
"So I don't bump into things. It doesn't help me see better. It just helps me find things."
Jenny takes her time unloading her lunch box. Her juice carton goes to the left of her sandwich, a banana and a cookie to the right. Everything goes back to its place after a sip or a bite.
The girls' sandwiches are the same. "Peanut butter and jelly is the best," Jenny says.
She spills her juice, and Kimberly hurries to the kitchen for a cafeteria assistant and a napkin. Later, it is Kimberly who spills.
"Do I have juice on my nose?" she asks Jenny.
"I don't know."
Back in the classroom, it's nap time. The children settle down on towels or rugs they have brought from home, and Mrs. Foster tunes the TV to Mister Rogers' Neighborhood. Some of the children, including Jenny, fidget away the time. A few sleep.
The day ends with free play, a chance to explore the classroom and get to know each other. Jenny and Kimberly wind up at a table with baskets of small trinkets.
A little boy plants himself in front of Jenny, making weird, exaggerated motions with his hands and arms. He is silent, testing to see if Jenny knows he is there. She does. "What are you doing?" she asks. He runs away.
Shortly before 2 p.m., Mrs. Schleicher comes by to walk Jenny to the bus and see her off.
When it rolls to a stop in front of her house, Dad is in the yard. He has been out there an hour, in case the bus came early.
"How was your day?" he asks.
"Good," Jenny answers. "I think I'll go back."
* * *
Three and a half months later.
The day's lessons done, Mrs. Foster lets the class enjoy a half-hour of free play. Jenny asks if she can spend the time playing with a plastic doll house and the furniture and cars that go with it.
"Who wants to play with Jenny and the house?" Mrs. Foster asks. At least a dozen hands shoot up.
Mrs. Foster is not surprised. Jenny is emerging as a class leader; other children choose to sit at her table and play on her team.
Jenny is also an easy target for pranks. Somebody put food in her milk carton, knowing she'd never know who did it. Another time, a child stabbed her hand with a pencil point.
Like the others in kindergarten, Jenny is learning to read and write. In both Braille and script, she can write "Jennifer Shields" and the date, as well as simple phrases: "Bats have ears. Bats have teeth. Bats have babies." She can read simple Braille books.
"She's very self-sufficient," Mrs. Foster says. "If I give the others an assignment she can't see, she'll ask, "What am I supposed to do?' She won't be left out."
In the mornings, no one meets Jenny's bus at school anymore. She gets off, unfolds her cane and walks to her classroom by herself. In the afternoons, before the dismissal bell, Mrs. Schleicher gives Jenny a head start. She stops by to tell her it's time to gather her things and get to the bus circle.
Jenny walks there unaccompanied. Her bus is the third to the left in the lineup, so she counts down. Before boarding, she makes sure the driver is going her way.
The Shields family and others with visually impaired childrenwent to Johns Hopkins in Baltimore last month for a medical conference. Doctors from hospitals and clinics around the country shared the latest research, including microchip implantation, that one day might allow a child like Jenny to see.
The family realizes that for her, a remedy is a long shot. They are comfortable with helping Jenny become self-sufficient and successful without benefit of sight.
Teachers at the Pinellas Center for the Visually Impaired in Largo recently introduced Jenny to a yellow Labrador retriever named Radar. Still a puppy, Radar is being trained to be a guide dog.
"We convinced her to walk the dog around on a leash," Chuck Shields says. "She wasn't afraid. She even felt his teeth."
At school, Jenny's best friend is a quiet, thoughtful little girl named Daniella. Perhaps because Daniella's parents are hearing-impaired, she is especially sensitive to Jenny's needs.
In the cafeteria recently, Daniella helped Jenny pack up her lunch box, dump her trash and find the exit door. Holding hands and swinging arms, the girls headed back to class, chattering as they walked along the sidewalk's white line.
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