From the South Bend Tribune
By Alicia Gallegos
Tribune Staff Writer
Source: news
Sunday,May 24, 2009
Edition: mich, , Page A1
First of three parts
SOUTH BEND The yellow school bus squeals to a stop in front of the small home on State Line Road, and like clockwork, Ramona Baker is on the porch waiting for her 10-year-old daughter.
As the doors squeak open, a brown-haired girl with long bangs falling over her eyes steps off the bus and into the freshly fallen snow.
“Mother?” Shaylyn Baker calls. The wind blows cold, and the girl pauses uncertainly for a moment, aware of the waiting wintry terrain.
“Mo-ther!” she calls again when she doesn’t hear a response. “I’m right here, Shay,” her mom calls back from the porch.
The girl smiles. She walks cautiously over the snow-covered ground. She knows she’s supposed to be carrying her cane, her mom says with a tsk.
“How was school?” Ramona asks her daughter as the girl walks toward her.
“Borr-iing,” the child replies in a singsong voice. “Boring as usual.”
Shaylyn would prefer for her mom to be waiting near the street instead of on the porch, but Ramona knows the girl is capable of following her voice. She wants her daughter to grow confident in navigating familiar territory.
“I have a stupid test to study for,” Shaylyn says as she continues her step-by-step trek.
“Which one?” her mom asks.
“Guess!” she says. Shaylyn steps near the porch now, maneuvering dangerously close to a wooden banister.
“Watch out, there’s a pole in front of you,” Ramona warns her calmly.
Before the sentence is out, Shaylyn has stopped abruptly, inches from the wooden pole.
She turns and follows her mom’s voice onto the porch, as Ramona opens the door for her.
“It’s social studies!” Shaylyn declares as they go inside. “I’m not into social studies.”
Born sightless
On Sept. 25, 1998, Shaylyn Ann Baker entered the world.
The mom remembers the nurses gazing at Shaylyn strangely as she was delivered. They said nothing at first, but the mom knew something wasn’t right.
After her pain medication wore off, doctors explained that Shaylyn had been born with only a partial eye on her left side, and on the right, a vacant socket.
Unanswered questions littered the prognosis. Ramona says no signs had warned of the defect during pregnancy.
After pursuing specialists, Ramona would eventually learn that the child was missing an X chromosome, a rare genetic fluke.
Before she was in kindergarten, Shaylyn had undergone two cornea transplants and one reconstructive surgery.
“It was nerve-wracking, nail-biting,” Ramona said of watching her baby endure operations. “But we made it.”
As a toddler, Shaylyn may have been able to see shadows, her mom says, but by age 5, she was fully blind.
Like many parents, Ramona did not know much about blindness before her daughter was born other than having a blind friend herself during grade school.
In the United States, close to 100,000 children younger than 21 are blind or visually impaired, according to the American Foundation for the Blind. The count of fully blind children is not clear, says Stacy Kelly, with the AFB, but the World Health Organization estimates that of the 161 million visually impaired in the world, 37 million are blind.
Most visual impairments are now preventable or treatable, according to the organization. Still others fall into that much smaller percentage of sightlessness that is permanent.
‘People are wrong’
While her mom discusses Shaylyn’s early childhood and surgeries, the girl sighs in exasperation, waiting for a chance to interrupt. The animated 10-year-old is much more interested in explaining what she can do, not what she can’t.
She holds her Brailler on her lap during a recent visit to her home, ready to demonstrate her speed.
Quickly, she punches the entire alphabet across the keys, announcing each letter loudly as she types.
“Any questions?” she finishes with an ear-splitting clap and a smile.
Like most 10-year-olds, Shaylyn loves the Disney Channel, playing Nintendo Wii, acting out scenes from “High School Musical” and singing along to the Jonas Brothers.
She knows most Hannah Montana songs by heart, having translated them into her own personal Braille songbook. Stacks of white Braille papers sit on the girl’s dresser with dozens of her favorite artists.
The Jonas Brothers are among them, a group that gives Shaylyn the giggles when she mentions them, particularly Nick. She can tell him apart by his voice.
Shaylyn “watches” all the Disney Channel shows, she says, although she admits that sometimes it’s hard to follow every scene. “Like if someone is doing a karate move,” she explains, “I don’t know what move.”
The 10-year-old is used to being quizzed about being blind, especially by other kids. She explains patiently what happened to her eyes, her mom says, and how she reads Braille.
William, 12, says it bugs him when kids think his sister isn’t just a normal girl.
The boy and his two older brothers have taught their sister to ride a bike – first with training wheels around the garage, then up and down the driveway without – how to aim and shoot hoops, even how to skateboard and catch a football.
“She’s not really different,” William says matter-of-factly. “She just can’t see. Other than that, she fits right in.”
A few of William’s friends have poked fun at Shaylyn, running up to her and yelling, “Tag, you’re it!” before running away laughing. Ramona says William snapped at them and then came to his mom fuming.
But Ramona says she reminded her son that most boys pick on younger girls, blind or not.
“I said to him, ‘William, do you want them to treat her like she’s special, or like any other girl?'”
If it was up to Shaylyn, it would be the latter.
“I practice things a lot,” Shaylyn says. “People are wrong about the things I can’t do.”
Not just ‘the blind life‘
After doing laundry, Ramona places two small piles of clothes on top of Shaylyn’s dresser, one of shirts and blouses, the other of pants and skirts.
Every morning, the girl picks a top from one stack and bottoms from the other. She asks her mom for approval.
“I can’t see the colors,” Shaylyn explains. “So I’m like, ‘What am I going to wear today?’ My mom usually tells me what the weather is like.”
By age 10, Ramona knows that most girls have developed their own sense of tastes for clothing and color.
“I try to keep her in style,” Ramona says. “No belly shirts. Some lip balm.”
Making sure clothes are matched, hair is combed and buttons are buttoned is combined with the daily task of wiping Shaylyn’s eyes.
Because of added pressure on her eye sockets, her mom explains that Shaylyn produces a constant buildup of eye secretion at the corners, the same substance that develops while most people sleep.
Every six months, Ramona must also clean and polish her daughter’s prosthetic eyes. It’s a duty she says both she and Shaylyn dislike.
Each replacement eye must be taken out and washed in a solution. The girl’s sockets must then be flushed out and the prosthetics placed back inside. “She hates it,” the mom says. “It’s just one of those things.”
Ramona is her daughter’s eyes for much of her life, but she isn’t around for every part of the girl’s day.
Shaylyn is on her own the second she’s back on the bus in the morning, riding the short distance to Darden Primary Center.
Ramona decided against sending the girl to an-all blind school in Indianapolis.
She couldn’t bear the thought of sending her baby away, she says. But also, the mom wanted her daughter to have the same school experience as any child.
“I didn’t want her to just know the blind life.”
Coming Monday: Focusing on the fourth grade
Student opens eyes of others at Darden
By Alicia Gallegos
Tribune Staff Writer
Source: news
Monday,May 25, 2009
Edition: mich, , Page A1
Second of three parts
SOUTH BEND — In 26 years of teaching, Ann Marie Szymanski had never before had a blind student.
Visually impaired students have made their way through Darden Primary Center in the past, the fourth-grade teacher explains, but they were few and far between.
When 10-year-old Shaylyn Baker entered her class at the start of the school year, the teacher was a bit worried about how she and the class would adapt.
But what resulted was a kid who is as much a teacher as she is a student.
“It’s been a learning experience for all of us,” Szymanski says.
Decades ago, visually impaired children all went to one school, says Stacy Kelly with the American Foundation for the Blind, but today more blind children attend neighborhood schools than those enrolled in all-blind schools.
In the South Bend Community School Corp., 53 students are recorded as being visually impaired, of whom only six are totally blind.
Shaylyn has attended Darden since the third grade after moving from her Niles home with her mother, Ramona, and 12-year-old brother, William.
The girl has always gone to public school, a decision her mom made in the hopes it would give her a more realistic life experience than a blind school.
“I actually have friends that can see,” says Shaylyn, which she adds is a good thing, “like because if I’m going to run into a wall, they’ll tell me.”
Learning to learn
On a recent day, Szymanski’s fourth-graders walk into the computer room and take their seats in front of the flashing, beeping computers.
Shaylyn sits at her station with her special education teacher, Janice Irving, standing nearby.
“Are you ready for a quiz?” Irving asks.
Shaylyn groans. “Yeah,” she says.
Math questions on shapes and angles appear on the screen. Irving places Shaylyn’s hand on the top of her computer and moves it along the sides.
“How many sides does a hexagon have?” she asks.
“Six?” Shaylyn answers uncertainly.
That’s correct, Irving tells her, clicking the answer on the computer with Shaylyn’s mouse.
Irving, teacher of the Blind and Low Visual, is Shaylyn’s personal instructor at Darden, translating assignments into Braille and staying with the girl for the morning.
Irving travels to 14 schools in the district, she says, depending on need, and has a total of 24 visually impaired children. She spends the most time with Shaylyn, who is her only fully blind student.
Shaylyn has an assortment of Braille textbooks, but Irving helps transcribe other assignments into Braille and transfers her work to writing so that Szymanski can grade it.
“We depend on her a lot,” Szymanski says. “We always need to think ahead.”
In the classroom, Shaylyn sits at a larger desk with more space for her Brailler and bigger books.
During a recent assignment on creative writing, students stand and read their personal stories.
Shaylyn sits when it’s her turn, her fingers flying across her Brailler as she reads. Like the other 10-year-old authors, she makes silly voices for each character in her story, beaming when she hears laughter.
At the end of her report, students raise their hands to give feedback.
“Tell me whose hands are up so I can pick,” she tells Szymanski.
Hands, she can’t do, but matching names with voices, that’s a whole different story.
Sharpened senses
While sitting with Irving during class, Shaylyn sometimes hears a whisper from across the room or a sound in the hallway that no one else notices.
“A noise in the classroom, something dropped,” says Irving. “She’ll say, ‘What’s that noise?’ I haven’t picked up on that.”
Shaylyn’s hearing is impeccable.
When other students say hello to the girl as she walks down the hall, she can usually tell who’s speaking.
She admits, however, that she has a hard time telling her friend Christi’s voice apart from her twin, Charissa’s, unless one of them has a stuffy nose.
Objects or walls in front of her also produce a sort of sound, too, Shaylyn says.
“Like when I’m walking by a tree, it has a weird sound,” she explains. “It just sounds like something blocking that open space.”
While in a room with various conversations going or even in the middle of talking herself, Shaylyn suddenly goes silent, her face set in concentration and her head tilting to lift an ear.
“What is it, Shay?” her mom will ask. “What do you hear?”
Often, it’s a sound such as a radio alarm beeping in another room, or on one occasion in the midst of video game music and children cheering, the 10-year-old told a reporter that her cell phone was ringing deep inside her purse.
Raising awareness
Everyone in Shaylyn’s life knows how she feels about The Cane.
The fourth-grader is extremely independent and would rather travel on her own or with a partner than use her walking cane.
“I don’t need it,” Shaylyn says when asked. “I know my way around.”
When she first started at Darden, Shaylyn toured the school, branding the layout of hallways and classrooms to memory. Now, she rarely uses the cane.
The 10-year-old has no problem answering questions from students about her impairment and is quick with a comeback if someone challenges her abilities. “I know! I’m not stupid!” she snaps at a girl who insists she’s taller than Shaylyn.
The fourth-grader even went around to each Darden class and spoke about being blind at the start of the year. When it was Valentine’s Day, she proudly presented each classmate with a home-made Braille Valentine.
“I think Shaylyn teaches the other kids a different way of living,” mom Ramona says. “Because of the way she has to live.”
During class, Szymanski says she’s become more cognizant of the words she uses, changing such phrases as “Look at the board” to “Use your listening skills.”
Of course, some concepts are too difficult to explain, Irving says, such as color or adjectives like shiny, dark or light.
Many of the abstract concepts don’t exist in her vocabulary, the teacher says, and Shaylyn doesn’t ask many questions about what she knows comes only with seeing.
But many visual lessons can be adapted to become more tangible for Shaylyn.
When the fourth-graders made maps of Indiana recently, Shaylyn made hers with different textures for each geographical area, using tacks, cotton, glitter and yarn.
The map hangs on the wall with the other students’ work, where everyone can feel it.
Navigating the fourth grade can be tough at times, but Shaylyn does impressively well, receiving mostly A’s and B’s on her report card, her mom says.
Of course, the social realm comes with its own challenges.
Having a good friend can make all the difference.
Coming Tuesday: The eyes of friendship
You gotta have friends
By By Alicia Gallegos
Tribune Staff Writer
Source: news
Tuesday,May 26, 2009
Edition: mich, , Page A1
Last of three parts
SOUTH BEND — Tennis shoes squeak across the floor, the sound of laughter echoing off the walls as the fourth-graders take their warm-up laps around the gym.
Weaved inside the circling 10-year-olds are two girls in identical sky-blue shirts, the best friends sprinting with their hands clasped together.
One girl runs just a bit ahead of the other, pulling her friend gently, careful not to break the link. The second girl treks a few steps behind, her moves slightly slower as she bounds along with a smile.
Gym is the best part of the day, say Shaylyn Baker and Christi Vellner. The girls are always partners, joining arms and swapping secrets and stories as they stretch.
But unlike most friends, Shaylyn counts on Christi to share her sight.
Born with only one partial cornea, Shaylyn is now fully blind. The 10-year-old has undergone many surgeries and has two prosthetic eyes.
It is Christi who looks out for flailing classmates as they run, steering Shaylyn safely to the middle of the gym when it’s time for instructions.
The two friends appear oblivious to Shaylyn’s impairment as they play, Christi acting as Shaylyn’s guide without a second thought.
Today’s activity is bowling.
Students pick a group and form lines throughout the gym, then take turns rolling a bouncy red ball down the floor toward a set of standing pins.
Shaylyn and Christi grab hands after Mrs. Colleen Weiber explains the rules and the two gallop over to their spot.
Christi centers Shaylyn on the right line and straightens her shoulders after handing her the ball.
Shaylyn propels the ball forward. The red sphere half rolls, half bounces across the floor, hitting two of six pins.
Cheers erupt from Christi, triggering Shaylyn to squeal, too, both girls jumping up and down in victory.
At 10 years old, being included is everything. No one knows that better than those who have been excluded before.
Just ask Shaylyn.
Peas in a pod
As soon as the door of the Smallwood Street home opens, the sounds of squeals and giggles fill the living room.
Shaylyn, Christi and Christi’s twin sister, Charissa, clamber into the house, stashing their backpacks and jackets inside the hall closet.
Today is Girl Scouts for Troop No. 28.
While waiting for the 4 p.m. troop meeting, Shaylyn does homework at Christi’s house, or the two play Nintendo Wii.
Shaylyn brags that she’s quite the Wii player, and Christi and her sister set up the game to prove it.
Christi places the controller in Shaylyn’s hands as a boxing game starts. At the sound of the bell, Shaylyn whips around, punching her arms in the air and striking the boxing opponent on the screen. He goes down.
With Wii baseball, the 10-year-old does just as well as Christi and her sister, swinging the controller as the ball comes toward her player. Strike! Strike! Hit!
Shaylyn explains that she listens for the “swoosh” sound that the ball makes once the pitcher releases it, and she times her swing. Christi’s mom, Diane, says she never realized the added sounds the video games make until Shaylyn came along.
Of course, it helps to have Christi nearby, sometimes yelling, “Now!” to signal when Shaylyn should swing the controller.
Christi cheers when her friend scores, the two girls excitedly hugging. “My girl!” she says.
‘She helps me get better’
Since they met in the third grade, Shaylyn and Christi have been inseparable. Besides Girl Scouts, Diane says her family also brings Shaylyn along to church with them during the week.
“The first time (Shaylyn) spent the night, I was a little nervous,” Diane admits. “But Christi took care of everything. She’s always taking her around.”
The friendship has been a blessing for both girls.
Christi, Diane says, has always been shy, especially compared with her more social twin, but since she’s known Shaylyn, she has become more outgoing.
Perhaps, her mom says, it’s the chance to help lead.
“Christi hated being shy,” Diane says. “It kind of got her out of her shell.”
Shaylyn is the more dramatic of the two, acting out scenes from “High School Musical” in front of strangers without hesitation. She nudges Christi to recite the lines. The best friends love to sing, bursting into song at any given moment, Shaylyn whispering for her friend to raise her voice.
It’s hard to imagine the two girls were ever without the other. But they were. And they remember.
In a word, Shaylyn describes life before Christi.
“Horrible.”
When asked why, the 10-year-old’s animated face for the first time goes vacant, her expression heavy with remembering.
Back at her old school, she says, the kids weren’t always nice.
“My friends I used to have before were very mean,” she says quietly. “One girl straight-up left me and didn’t come back to me.”
When prompted, Shaylyn elaborates.
“Some said nasty stuff about me when I was being nice, like, ‘Why don’t you go play with yourself, no one wants to play with you.’æ”
Shaylyn recalls being alone sometimes on the playground.
Christi, Shaylyn says, is nothing like those friends.
“She tells me what’s wrong and what’s right,” Shaylyn explains, her voice brightening again. “Christi’s kinda different because she’s not bossing me around and she’s not pushing me.
“She helps me practice,” Shaylyn says. “She helps me get better.”
‘It’s the climb’
If she could see one thing, Shaylyn says it would be people’s faces.
“If I’d be able to see their face,” she explains, “I could ask them out, like for the prom, you know.”
The 10-year-old doesn’t offer anything else she’d like to see and instead changes the subject.
“Have I shown you this?” she asks, holding up a backpack covered with Hannah Montana stickers that she and Christi decorated together.
When Shaylyn grows up, she’s leaning toward becoming a singer, she says, or possibly a teacher.
She knows there are some things she probably would have trouble doing, she says, like being a doctor. “That would be the hardest part, seeing what’s going on.”
“Either a piano person or a teacher or a singer,” she says.
Already, the girl has self-taught herself some songs on the keyboard and has a sharp memory for notes and lyrics.
And, of course, she’s not timid about performing.
On a recent day in her room, Shaylyn breaks into one of her favorite Hannah Montana songs, called “The Climb,” a cappella style.
“I can almost see it, that dream I’m dreaming,” she sings. “But there’s a voice inside my head sayin’, You’ll never reach it …
“Ain’t about how fast I get there, Ain’t about what’s waiting on the other side …
“It’s the climb.”
The 10-year-old smiles broadly to the sound of clapping as she finishes.
She has no time for dwelling on things she can’t change. She’s got no patience for people who focus only on what they can see.
With some fierce attitude, her family’s encouragement and a best friend to lean on, Shaylyn lives to break barriers that tell her being blind means she can’t.
She’s all about the climb.
Staff writer Alicia Gallegos: agallegos@sbtinfo.com (574) 235-6368
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