The Braille Monitor                                                                                         July, 2002

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Small Wonder

by Sarah Saffian

Sami Osborne reads a book to his little brother Luca.
Sami Osborne reads a book to his little brother Luca.

From the Editor: The following article first appeared in the June 2002 issue of Rosie. Sami Osborne's family has been to the National Center for the Blind several times to learn what they can about blindness. The fact that they have acquired healthy attitudes about Sami's blindness and are well on their way to seeing that Sami grows up a happy, normal child is amply demonstrated in the following story. Here it is:

[subtitle] Sami Osborne, who's blind, was walking with a cane when he was only two years old. At four he's ready to take on anything.

Sami Julien Osborne takes swimming lessons every Saturday morning with his mother Isabelle at the YMCA in their hometown of Nyack, New York. He has his own library card, and he goes regularly with his father Brian to the Nyack library to borrow books--The Roly-Poly Man and Geraldine's Blanket are among his favorites. He says he "feels good" about being the older brother of Luca Marc, born last September on Sami's own birthday; he likes to kiss Luca's head and shake his hands. Last fall Sami started prekindergarten in a class at the Montessori school in nearby Suffern. When he grows up, he says, he'd like to be a fireman, "to help people."

Right now, though, Sami, who was born blind, is having an average four-year-old kind of day. It's a warm afternoon, and he's dressed simply in a T-shirt and shorts. Moving slowly, but with assurance, Sami opens the refrigerator, takes out a bottle of water, and climbs into his booster seat to eat lunch: cheese crepes and chocolate custard. Sami's independence is something Brian and Isabelle have focused on developing from the time their son was an infant.

Instead of manually guiding Sami, they assist him by describing his surroundings--in both English and Isabelle's native French, in which Sami is also fluent. "By two years old Sami was confident enough to use a cane," says Isabelle.

"He was sitting up at four months, walking with help at a year, comprehending everything--he developed normally," Brian adds. "But there are still experts who insist, `No, no. We don't teach a cane till first grade.' This is a bad idea, because the cane gives tremendous confidence. It's really liberating."

Brian, forty-seven, and Isabelle, thirty-seven, met in 1994 in the postdoctoral biology program at the University of California at Berkeley, and they were married two years later. (Brian now works for a pharmaceutical company in Tarrytown, and Isabelle is a full-time mom.) Sami was born at 11:00 a.m. on September 1, 1997, full term, seven pounds, two ounces-- "a beautiful baby," says Brian. Because an infant's eyesight develops gradually, it wasn't until about two months later that his parents realized there might be something wrong. "He had some crossing of the eyes, which is not uncommon for newborns," Isabelle says. "But then I started to notice while breast-feeding him that his pupils were unusually big and reflected the light--like the eyes of a cat--and that his irises were different sizes and colors." During Christmas vacation in France with Isabelle's family, she and Brian worried about their child's vision. "I'll never forget that evening flight to Paris, when I stayed awake, thinking about it," Brian says.

Throughout January 1998, which Brian describes as "a month of many tears," he and Isabelle took Sami to several specialists at different New York hospitals. "There's this searching and despair, when parents think the ultimate tragedy has occurred," Brian says. "Meanwhile, we have pictures of Sami from that time, and he was a content baby--starting to smile, becoming a person." After a month of tests and a gradual elimination of diagnoses, doctors determined that Sami's retinas hadn't developed normally. His total blindness was confirmed and deemed untreatable. "In a way, after all the uncertainty and false hope, the straightforwardness was a relief," Isabelle says. "This is it--he can't see; there's no treatment--and we move on from there."

And so Brian and Isabelle set about making Sami's condition simply a fact of their lives. "It wasn't that hard an adjustment after a month or two, because we learned as much as we could," says Brian. Isabelle has completed a Braille course through the Library of Congress; Brian, who is currently at a first-grade level in Braille, plans to learn to read along with Sami. When Sami started walking, around age one, they took him to Terry Principe, an orientation and mobility specialist with the Association for the Visually Impaired, for an evaluation. "He was walking at a young age," Terry says, "even though he never crawled." (She says this is common for blind children, who don't like the position of being on their stomachs.)

As Sami approached school age, his parents had to decide whether they would send him to a specialized school for visually impaired students or to a regular program with sighted children. Brian and Isabelle ultimately determined the latter would be better for their son. "We wanted Sami to have teachers who didn't have preconceptions and wouldn't underestimate him. That's where a specialized school can fail, when the teachers figure they already know everything and focus on the disability, not the child," Brian says.

Over the summer Terry, now Sami's mobility teacher, oriented him to the school. "We learned how the classroom was set up," says Terry. "So when the teacher says, `We're going to the art corner,' Sami can get up and go over there like everybody else."

Rather than worrying that Sami's classmates would tease him for being different, his parents were actually more concerned that the other children would be overly solicitous. As it turned out, Brian and Isabelle were right. "A couple of the girls have tried to take him under their wing and drag him around, and the teacher praises their helpfulness," Terry says, laughing, "but she also explains that he can do things by himself. Overall, the kids have accepted Sami as part of the class. Having him there is an extra piece of education for them." On the first day of school, for instance, some of the other students learned how to type their names on the Brailler, a typewriter with Braille keys.

Sami has learned different techniques to help him stay on track with his classmates, such as putting sandpaper under his drawing pages (he feels the texture to determine where he's colored already) and using scented markers to distinguish between colors. "Of course he'll hear kids talking about things they see, concepts difficult for him to understand, like clouds in the sky," says Sue Ellis, Sami's Braille teacher. "But blind kids learn a response to that: `I see with my fingers.'"

Sami is enjoying school and thriving academically, particularly in his favorite subjects, music and Spanish. A quiet child by nature, he is still reserved; but he is learning to socialize, both in the classroom and at parties and playdates.

Today, once Sami finishes lunch, he's headed to a new playground in the nearby town of Piermont. "Sami, your sneakers. Let's go," Brian says, placing the small white shoes on the floor. Following the sound of his father's voice, Sami approaches the sneakers and puts them on, fastening the Velcro straps. Brian watches as Sami finds his cane, feels for the door handle, opens the door, and heads outside.

"Good job, mister!" says Brian.

Walking toward the playground, Sami uses his cane sparingly and with ease. Brian describes the layout of the park: "There are two slides, no seesaw, a climbing rock." Sami moves boldly on the large, gray plastic rock, despite its irregular levels and the few scattered handles to grab onto. "It's kind of tricky without your cane, because you can't tell where the steps are," says Brian. But Sami makes his way, with steady determination, all the way to the top. Two other kids watch his progress with curiosity and then resume their playing. On the way home Brian and Sami make plans for the rest of the afternoon. "Sami, there are two soccer games on television. Want to listen to them with me?" Sami smiles and nods yes.

Sami's brother's eyesight is developing normally. But even before Luca was born, Brian and Isabelle weren't concerned. "It doesn't sound like it could be true, but my worry was always that the next child wouldn't be like Sami, because Sami is such a remarkable and rare little boy--funny, calm, affectionate," Brian says, looking at his first-born son with pride and love. "If Luca had turned out like Sami--so happy, so smart, and blind--his blindness would have been almost a non-issue. Initially Isabelle and I just saw Sami's blindness--it's natural at first. But at a certain point you see the child again. And the child is always there."

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