The National Federation of the Blind Magazine for Parents and Teachers of Blind Children
Vol. 22, No. 2 Spring/Summer 2003
Barbara Cheadle, Editor
[PHOTO/CAPTION: Paul Scruggs, Leah Grinder, and Jessica Watson show off their T-shirts at the Maryland Braille Readers Are Leaders awards ceremony. The students were among the thirty-five winners in the 2002-2003 contest. A complete list of the winners is published in this issue. ]
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Vol. 22, No. 2 Spring/Summer 2003
T-Ball Rules! Father Shares Passion for Baseball with his Blind Son
Walking Independently While
by Doris Willoughby and Sharon L. Monthei
by Sally Miller
The Courage to Dream
by Erik Weihenmayer
by Michael K. Meyerhoff, Ed.D
The Rebirth of Our Son
by Rhett Waldman
Fluency: Helping Your Child Read and Understand
Teacher Recognition Letter
Clothing, Grooming, and
Social Acceptability: Part 1
by Barbara Pierce
Growing Up and Going to Work: Preparing for the Workplace Begins at Home
Of Jobs and Jobs
by Patti Gregory-Chang
Thought Provoker: Of Blind
Kids and Tree Houses
by Robert L. Newman
by Sharon Maneki
Her Culinary Vision
by Kitty Crider
Why You Should Encourage
Your Child to Play With the Pots and Pans!
by Jacki Harth
by Carol J. Castellano
by Carol J. Castellano
2002-2003 Braille Readers are Leaders Contest Winners
AAF Free Braille Books Program
A Touch of Understanding
by T. Keung Hui
Braille Is Beautiful—A Disability Awareness Program for Sighted Children
A Review of SAL: Speech
by Robert S. Jaquiss
Braille Workshop For Parents
by Nancy Burns
Perspectives on Blindness: Siblings Have Their Say
My Role Model
by Tracey Westphal
For more information about blindness and children contact
National Organization of Parents of Blind Children
Baltimore, MD 21230
410-659-9314 ext. 360
www.nfb.org/nopbc.htm * [email protected] * [email protected]
Copyright © 2003 National Federation of the Blind
[PHOTO/CAPTION: Ryan Uhle poses for his 2003 baseball card portrait.]
[PHOTO/CAPTION: Ryan hits the ball while his dad cheers him on.]
Father Shares Passion for Baseball with his Blind Son
Reprinted from the May 5, 2002, Aiken Standard, Aiken, South Carolina, the article, originally titled, “Through His Father’s Eyes” is by Rob Novit, staff writer with the Aiken Standard.
Editor’s Note: Mike Uhle, the father in this story, and his wife, Keisha, became acquainted with the NFB shortly after their son, Ryan, lost his vision as a toddler. Despite their grief, they didn’t waste any time reaching out to get information. I met them at a retreat for parents sponsored by the National Organization of Parents of Blind Children and the National Federation of the Blind of South Carolina. They shared this article with me in the hopes that it might raise the hopes and expectations of parents of younger children, and inspire them to keep an open mind to all possibilities and opportunities for their blind children. By the way, Keisha tells me that Ryan will be playing T-ball again this year, and Mike is coaching the team. Here is the article as it appeared in the Aiken Standard last May:
Through his father’s eyes
The players, all of four-, five-, and six-years-old, race onto the field at Graniteville’s Gregg Park—a spring in their step, their caps pulled low to protect against a late afternoon sun that tinges their matching red shirts with an orange glow. It’s a timeless moment in small town USA and of course it’s about baseball, a game only a few decades younger than America itself.
In short right, a small boy named Ryan Uhle pounds his glove and places himself in good position. Nearby, his dad Mike soaks it all in proudly, smiling and laughing with uncomplicated delight. Mike Uhle was a multi-sport athlete at Aiken High as a teenager, but baseball was always his thing. And years later, when his wife Keisha gave birth to their first child, Mike held Ryan in his arms and could envision a future for his son a lot like his own.
“I had definitely wanted a boy so he could play sports,” said Mike. “I love baseball and when the TV is on, I’d rather watch baseball than anything else.”
Ryan was just six months old when he was diagnosed with retinal cancer and in the course of treatment over the next year, his right eye was removed. The prognosis for the left eye was very good, but a large tumor appeared unexpectedly when Ryan was two. During chemotherapy his retina detached and could not be repaired. The little boy had beaten the cancer, much to the relief and joy of his parents. But now they had to accept a new reality.
“Even with this form of cancer, we never imagined Ryan would be blind,” said Keisha Uhle. “We just thought he would be a one-eyed kid the rest of life. We had a plan in our heads of how we hoped our child’s life would be and then our expectations totally changed.” The couple knew as much about blindness as most other people, which was virtually nothing. But they did research and sought activities that might be suitable for Ryan.
Last year they discovered STAR, a therapeutic horseback-riding program for children and young adults with disabilities. That experience gave Ryan confidence and so did the violin classes that Mike and Keisha arranged through instructor Joanne Stanford. He attends preschool kindergarten at St. John’s United Methodist Church and a pre-school class at Aiken Elementary. Ryan will start a regular 5K class at Aiken Elementary in the fall.
Baseball—or at this age, T-ball—was seemingly out of the question, but Wendy Scolamiero, the Oakwood-Windsor physical education teacher, didn’t think so. A close friend of Keisha and Mike, Scolamiero knew they wanted to find as many regular childhood activities for Ryan as possible. Her own son, Clark, played T-ball at Gregg Park for a volunteer coach named Mike Conaway. Last year Scolamiero told him about Ryan and asked if the youngster could join the team this spring.
Conaway was all for it, but Mike Uhle had his doubts. “We were a little hesitant at first,” he said. “It was like ‘oh man, is he going to be able to do this?’ We didn’t want to be an inconvenience to everybody else. But Ryan never had any hesitation and the first day of practice convinced us it was the right thing to do.”
One of the players
Of all the kids on Ryan’s team, maybe three can throw the ball with any reasonable accuracy and perhaps the same number have some expectation of catching those throws. The rest are endearingly clueless as they stand in the field admiring their uniforms and their gloves and waving occasionally to their parents and siblings and their teammates.
Ryan sees none of this. But from his right field position, he has his father’s eyes. Mike stands next to him the entire inning. An errant throw comes toward them and Mike scoops up the ball and hands it to Ryan, who flings it within hailing distance of first base. Everybody cheers. “Way to go, Ryan.”
But Mike offers much more than a helping hand. He serves as Ryan’s personal color commentator, describing the game to his son as if Ryan were listening to him on the radio. In this T-ball league, one of the coaches pitches three times to each player; if the child doesn’t hit the ball, the tee is then used.
“The coach is telling the batter what to do,” Mike tells Ryan. “He pitched it and the batter missed it, and he’ll hit off the tee this time. Show me you’re getting ready. Hey, that’s a good job, buddy.” The batter sends a slow roller between short and third and reaches first safely. Ryan leans toward his dad and says slyly, “I caught a ball,” Mike just grins. “Oh get out of here.”
The game continues and Mike yells out encouragement to the other players. The next hitter swings and misses, fouls off a pitch and then whiffs on the next one. “But he looked like he was going to hit it this way,” says Mike. “What are you going to do if you get it?”
“Throw it to Clark,” Ryan responds immediately, “But what if he doesn’t yell for me?”
“Throw it anyway, because you might not be able to hear him with all the cheering.”
Another father, Morgan Stringfield, said he too wondered at first how Ryan would handle the situation. “But when I saw how Mike interacted with him and taught him how to do different things,” said Strickland, “I was surprised at how well Ryan was doing. It’s a neat thing for my son Logan too. He understands that Ryan can’t see and why Mike is out there to help him play the game. Logan realizes that just because someone has a disability doesn’t mean he can’t do things like everyone else.”
Ryan remains eligible to play again next season and has been invited to stick around an extra year if he wants to. His baseball career will likely end as his buddies move on to coach-pitch and beyond.
Wendy Scolamiero has been looking into other programs for Ryan and has contacted Chukker Creek P.E. teacher Dr. Bonnie Bucket, an authority on special needs students and physical fitness. Track and field is a good choice, as there are blind runners who compete with the assistance of sighted companions. But for now, baseball rules. Mike Conaway said he too has been amazed at Ryan’s success. A bonus is that some of the players including his son, Alex, are relatively shy. But they realized they have to call out to Ryan so he can locate them. “That has really helped them come out of their shells,” said Conaway. “They understand Ryan’s special needs and that’s been great.”
It’s the second and final inning and Ryan’s team comes to bat. He waits patiently for his turn, listening to the chatter of talkative teammates and the shouts and applause of family and friends. He has his own gallery—Keisha and his grandparents, two-year-old sister Natalie and new brother Jared, not yet three-months-old. Finally, it’s his turn. Mike hands a bat to Ryan, who eagerly walks to the plate. Mike sets the tee with the ball and positions Ryan, giving him an idea of the ball’s location and its height. Moments later, Mike barely has time to take a step back when Ryan swings. He connects! A hard grounder sails toward short and father and son take off in tandem, Mike running backwards and calling out to Ryan, who races toward him and reaches first safely.
“Good job, buddy!” Keisha screams happily from the stands. Natalie dashes away from her and hurls herself against the fence. “Go Ryan!” the tiny girl yells. The players behind Ryan also hit the ball and he eventually comes around to score. Not that anybody is actually keeping score, not for kids this age.
Natalie may join Ryan on the team next season, providing another set of eyes. Maybe someday she’ll sing or dance or play a musical instrument. It’s likely that Jared will participate in sports like his dad did a generation earlier. Ryan undoubtedly will serve as the supportive big brother for both kids.
But he’ll find his own niche, his parent said. And best of all, said Keisha, he’ll go to baseball contests with his dad. Thanks to the T-ball experience, Ryan will have a better grasp of the game. It’s all about the layout and rules and perhaps even more, the atmosphere—the National Anthem, the feel of a bat on the hands, the rust-colored clay blotches on the uniforms. And Ryan Uhle has been right in the middle of it. “It’s been fantastic to be out here with my son,” Mike said.
[PHOTO/CAPTION: Two adults—one sighted, one blind—walk and converse while the blind adult independently uses her cane.]
[PHOTO/CAPTION: These two children, one blind and one sighted, stay together as they independently follow an adult (not pictured).]
[PHOTO/CAPTION: A blind teen uses a cane independently while he and his father cross a street together.]
Walking Independently While Following Someone
by Doris Willoughby and Sharon L. Monthei
The following article is Module 46 from the book, Modular Instruction for Independent Travel for Students Who Are Blind or Visually Impaired: Preschool Through High School, copyright 1999, published by the National Federation of the Blind. The book is available for purchase ($20 plus shipping/handling) from the NFB Materials Center, 1800 Johnson Street, Baltimore, Maryland 21230.
To order online, select “Aids and Appliances” on the home page of the NFB Web site at <www.nfb.org>. For more information about this book or other literature from the NFB check out the Web site above, call (410) 659-9314, or send an e-mail to <[email protected]>. Please note that the three photographs that illustrate this article are not from the original publication. They are from the NFB archives and depict persons attending NFB functions.
Editor’s Note: A friend recently asked me for directions to a place she knew I had visited on several occasions. I had to confess that I couldn’t help her. Someone else had always driven me there, so I simply never paid attention to the street names, landmarks, or turns. I had only the vaguest notion of the general location of this place; and that vague notion was not nearly enough to get myself or anyone else there without assistance. A lot of drivers tell me that this happens to them, too. If someone else is driving, they simply don’t pay attention to where they are going.
The same thing happens to blind guys when they go sighted guide, or, as I, and many of my colleagues prefer to call it, human guide. If you are hanging onto someone else’s arm, then someone else is in charge, and you simply don’t pay attention to where you are going or how you are getting there. I think this is especially true of kids. Children and youth do not have the maturity or discipline to resist the natural inclination to relax and enjoy the ride, so to speak. They would much rather talk, plug into their Walkman, or simply space-out and daydream. The problem is, once expected to go solo, it doesn’t matter how often they may have traveled to, or within, a location. They will be as clueless as I was in the situation described above.
My observation is that kids who routinely use a cane and walk independently while following someone, are considerably better travelers in all respects. They walk faster, they have more confidence, they are more aware of their surroundings, they are more assertive and curious, and they are better at solving travel problems than kids who typically use sighted guide. It is my belief that the single one thing parents can do to promote independent travel, is to restrict the use of human guide. But a parent, or any sighted person for that matter, may feel awkward at first when trying to walk together with a kid using a cane independently. The following travel module, as well as other modules from this travel book, can, I believe, help a sighted parent as much as it helps a blind kid to become comfortable with this travel situation. So, from Willoughby and Monthei, here is a lesson on walking independently with a cane:
Objective: the student will use his or her cane and walk independently over varied terrain, while following someone else by means of sound and verbal explanation.
Age of Student: Preschool and up (see examples)
Primary Skill Emphasis:
Additional Skill Emphasis:
See also (Other Modules): [Note: These are titles of other modules in this book.]
Teacher Preparation: Find a location where the child can practice in a manner appropriate to his skill level. Select an interesting object or activity to approach.
Remarks: Avoid referring to “following a sighted person.” The leader could be a competent blind person. Instead, speak of “following someone.”
Example 1: Preschool and Kindergarten
“Here we are in Mr. Kopecky’s yard. We’re going to swing on his big porch swing. Follow me, now—you know your cane will tell you if there’s anything in the way, and it will tell you what is under your feet. I’ll keep talking as we walk along.”
(Deliberately walk across both grass and sidewalk, and in a path where the child will probably encounter some small trees. Keep talking.)
“Now I’m on the porch. Did you hear how my footsteps sounded when I was walking up the steps? You’ll be finding your way up here too.”
Stand at the top of the steps and keep talking. The child finds the steps and comes up. Sit down in the swing and invite the child to join you. Enjoy swinging for a short while. Repeat this three times. Each time, the child follows you down the steps and across the yard for some distance, then back to the swing again. Note the sound of the cane on the wooden porch.
On the third trip, the child is allowed to swing for a longer time as the lesson ends.
Example 2: Preschool Through Elementary Grade
“Here we are on the sidewalk. I’m going to walk along the sidewalk, and I’d like you to follow me. I’ll talk some, but mostly you will listen to my footsteps. I made sure not to wear soft shoes today; you can really hear my footsteps! We will stay on the sidewalk all the time, and your cane can help you find it…
“I’ll go straight ahead for awhile. Then you’ll hear me turn, and you follow. Remember to sweep your cane to help you stay on the sidewalk, and to check in case anything is in the way.”
Walk along briskly, making sure your footsteps are clearly audible although not unnatural. After awhile, turn onto a branch sidewalk.
Continue in the same vein, with the length and complexity of the activity depending on the child’s ability and experience.
Remarks: It is important for a blind traveler to be able to follow a sound while walking independently. However, as the child matures, it should not be necessary to hear a constant sound. The example below brings this out.
Example 3: Elementary Grades
“Today you’re going to practice following me when you can’t hear my footsteps well, and when I am not talking all the time. I’ll talk a lot, but never every second. And I’m wearing tennis shoes, which are very quiet.
“I need to put a lot of things in my car, and I’d like you to help me. We’ll each carry a load.
“Now first, we’ll go out the south door and turn right, along the sidewalk… [keep walking, but deliberately pause in your speech]… Now, here, turn left across the teachers’ parking lot [pause in speech]… Yes, this way, straight ahead [pause]… that’s right, keep coming this way [pause]… Here’s my car. Thank you! Set things down here, please.”
Thus, the leader alternates between speaking aloud or making some other sound; giving specific directions; and continuing briefly without being heard. This is a realistic life situation that works well. The leader should not need to talk constantly except for a beginner or a very complex situation.
Depending on the route, the follower may be behind or beside the leader from time to time, just as anyone would do. This practice is excellent preparation for following along with a group.
Remarks: If this kind of practice is never done, some students become very dependent upon constantly hearing or touching the companion, and become frightened when they cannot.
Deliberately plan for the student to follow a person (with sound clues) from time to time. URGE PARENTS TO DO THIS ROUTINELY. [Emphasis added]
An experienced student can follow comfortably almost anywhere, and need not necessarily take someone’s arm. However, in a crowded and/or noisy situation, it may be simplest to take someone’s arm in order to stay together easily. But the blind person should continue to use his or her cane.
Don’t let this happen: A ninth-grade student followed me across a large parking lot to my car. “What’s this?!” he exclaimed each time as his cane encountered a low concrete barrier, a grassy traffic island, and then a utility pole. He had expected to walk around parked cars, but was genuinely surprised to find any of these other things in a parking lot. His parents had always guided him completely around them. They had also encouraged him to surrender responsibility for direction. Despite the straightforward path to my car, this student had no idea how to return to the school building.
Don’t let this happen to your students.
[PHOTO/CAPTION: Sally and Anna Miller get ready for a road trip.]
by Sally Miller
Editor’s Note: Going on a road trip this summer? Taking a long weekend to drive up and see your parents? Are you planning to all pile in the car and drive to Springfield to cousin Jim’s wedding? Here’s a tip from Sally Miller, President of the South Carolina Parents of Blind Children, about how to make the trip easier for you, fun for your blind child, and a learning experience for all:
Last year as I contemplated driving to Louisville, Kentucky, for the NFB National Convention, I came up with what I thought was a good idea. Since I was going into a part of the country with which I wasn’t familiar, I wanted my daughter to navigate for me. Using my trusty map I planned my route and wrote out the directions. Anna is a Braille reader so I used her Braillewriter to prepare the following instructions:
Directions to Louisville
We will be going through four states.
1. South Carolina
2. North Carolina
The major cities we’ll be driving through are:
1. Begin in Charleston, South Carolina
2. Columbia, South Carolina
3. Then Spartanburg, South Carolina
4. Asheville, North Carolina
5. On to Knoxville, Tennessee
6. Next is Lexington, Kentucky
7. Last is Louisville, Kentucky
1. Begin in Charleston. Go to Interstate 26 and drive north.
2. Continue on I-26 around Columbia.
3. I-26 goes north past Greenville and Spartanburg to the South Carolina/North Carolina border.
4. At Asheville take I-40. Drive west and north through Newport then east to Knoxville.
5. At Knoxville take I-640 from I-40 to I-75.
6. On I-75 drive north through Lake City, Jellico, Williamsburg, Corbin, Mt. Vernon, Berea, and Richmond, to Lexington.
7. At Lexington I-75 intersects with I-64. Go east toward Louisville.
8. Drive on I-64 past Midway, Shelbyville, and Simpsonville.
9. At Louisville, continue on I-64. Watch for signs to the Convention Center.
10. Galt House Hotel is on North Fourth Avenue, between River Road on the north and Main Street on the south.
1. Get on I-64. Drive to Lexington.
2. At Lexington take I-75.
3. At Knoxville pick up I-640 to I-40.
4. Drive I-40 to Asheville.
5. Pick up I-26 and drive to Charleston.
Please drive safely!
As you can see we first established which states and cities through which we would be driving. Then, using numbers to help keep track, each step of the trip was described simply. We also included the return trip.
We practiced reading these directions during the week preceding our trip, thus giving Anna the chance to become familiar with names of cities and route numbers.
On the day of our departure we were prepared for driver and navigator to work together to reach our destination. As a team, with Anna reading each step to me as it was required, we reached our destination and returned home without a wrong turn!
[PHOTO/CAPTION: Erik meets blind children at events all over the country and encourages them to pursue their dreams. Above, he talks to John Vickers of Texas at a National Library of Congress book fair.]
The Courage to Dream
by Erik Weihenmayer
from the book
Touch the Top of the World:
A Blind Man’s Journey to Climb Farther than the Eye can See
by Erik Weihenmayer, copyright 2002
Published by the Penguin Group, Penguin Putnam, Inc.
ISBN 0-525-94578-4 (hc.); ISBN 0-425-28294-2 (pbk.)
The following article is an excerpt from Erik’s book, Touch the Top of the World, and is reprinted with the permission of the author.
The book may be purchased in print or audio formats from any local bookstore or from <Amazon.com>. A Braille copy of the book can be purchased from the National Braille Press (www.nbp.org or call (800) 548-7323). It can also be borrowed in audio cassette format from your regional library for the blind and physically handicapped, and it will soon be available to borrow in Braille, as well.
From the Editor: On May 25, 2001, in an expedition sponsored by the National Federation of the Blind, Erik Weihenmayer became the first—and only—blind climber to reach the top of Mount Everest—the tallest peak in the world. Erik made the cover of TIME magazine, and the story of the crew’s amazing climb—the largest group to ever summit on the same day (nineteen team members), the oldest man in history, the first father and son, the first blind man—made headlines all over the world. At the age of thirty-three—twenty years after he lost his sight at the age of thirteen—Erik was a world-renowned hero.
However, Erik did not set out to become a hero. In the Everest chapter of the 2002 edition of his book, Touch the Top of the World, Erik states:
“I don’t climb mountains to prove to anyone that blind people can do this or that. I climb for the same reason an artist paints a picture: because it brings me great joy. But I’d be lying if I didn’t admit my secret satisfaction in facing those cynics and blowing through their doubts, destroying their negative stereotypes, taking their very narrow parameters of what’s possible and what’s not, and shattering them into a million pieces.”
But before Erik could blow away the stereotypes of others, he had to first face his own fears and limited notions of what blind people could do. Erik was born with retinoscheses, a degenerative eye disorder that would gradually lead to blindness by the age of thirteen. Early on in his childhood, Erik showed a penchant for adventure. Buoyed by his own spirit of independence and encouraged by his loving, and determined, parents, Erik refused to let his slowly deteriorating vision stop him—he also refused to “… accept myself as being blind.” He scraped his knees learning to ride his bike just like other boys, and, unlike most kids of any age, explored the streets of Hong Kong before he was ten.
However, after several years of steadily degenerating and unstable vision—his middle school years, the ones that, in his book he describes as living “between blindness and sight”—his vision drops to the point that … “There could be no more lying to myself. The truth was brutally clear.”
Despite this realization, however, adjustment does not come easily or quickly for Erik. His natural adventuresome spirit is transformed into rebellion against everything that smacks of blindness—especially his white cane. Erik describes his defiant denial of blindness in the chapter titled “Helplessness.” As recalcitrant as he is, however, his family and the other adults in his life who care about Erik will not give up on him. The following excerpt is from the chapter “A Faint Recognition.” Erik is, at this point, somewhere in the middle of his freshman year in high school. Angry and bitter; he is, nevertheless, also beginning to understand that blindness does not have to mean the end of his dreams. Here is the story in Erik’s own words:
Independence didn’t come in leaping strides but in tiny successes, almost imperceptible. It came in the discovery that I could match my socks by putting safety pins in different locations, in the pride of an A paper written on my speech-adapted computer, and in the confidence that came from knowing my surroundings by the clues I felt through the end of a white cane. Although small, they gave me the courage to dream a little bigger.
During a free period, I sat in the cafeteria, thinking about my midnight outings with Chris and what Jerry had said about help. I had almost been thrashed by a van full of angry drunken seniors, and the unbelievable part was that I hadn’t been caught. I had been standing on the side of the road, my pale butt glowing in the dark like a second moon, when they had poured out after me. When I had finally waddled away, my pants around my ankles, my cane tapping in front of me, I had heard the fastest boy’s breath behind me, but he hadn’t caught me.
My escape was a little unorthodox, but it had done the job. The cane was what had really saved me, and if it could save my hide from an almost unavoidable thrashing, then why couldn’t it work right here in school? A week earlier, Mrs. Mundy had made a tactile map of the cafeteria and had forced me to carry it. I leafed through my notebook and found the map. It was still fresh and untouched. I studied it for a long time, then practiced maneuvering around the empty tables. My book served as a tray, balanced in one hand while the other tapped my cane along the floor.
When lunchtime came, I took my tray from the counter, turned right until my cane gently tapped the wall. Then trailed the wall until I felt the soda machine protruding. I knew the gap between two tables was a few feet away. I turned left, using the light tap of metal chair legs as my guide. Then, in front of me, over the bustle, I recognized the voices of my friends. Working my way around the table, I subtly touched the back of each chair until I found one much lighter. Here, I carefully placed my tray, making sure it was fully resting on the table. Finally I sat down; a secret sigh escaped from my lips. Mitch, sitting in the next chair, grasped my cane. “Hey! That thing really works,” he said.
“I guess it does,” I replied smiling, beginning to believe it myself.
In Braille class, Mrs. Mundy Brailled an article and told me to read it for homework. “You’ll read it out loud for me tomorrow,” she said. Of course, I didn’t read it that night. The next day I stumbled through it aloud, reading it listlessly with the speed of a first grader. As I slowly began to understand the story under my fingers, I learned that it was about minor-league baseball players struggling to make it into the big leagues. Since Little League, the characters had dedicated their lives to making it in the majors, despite their knowledge that their chances were less than minuscule: one in one hundred thousand. Their struggle was like salmon swimming upstream. Usually my frustration was directed toward Mrs. Mundy for forcing me to waste my time deciphering complicated patterns of dots, my brain hardly bothering to recognize the meaning of the words. Today, however, my frustration was directed at my own stumbling inept fingers. I pushed them along, wanting to know if they would make it. Mrs. Mundy had outsmarted me. How hard had she worked to find a subject I’d be interested in? She had presented me with articles about politics and science, but this one had taken hold. It was about people striving for something, and the fascinating part about it was that they knew what they were striving for. They were moving in a direction. I realized that there was more to Braille than just raised dots; there were stories about people dreaming, and those stories made the gigantic leap from my stumbling fingertips all the way to my brain.
In the winter, all the freshmen tried out for different teams. I didn’t want to be left behind. Prior to my going blind, I wasn’t allowed to participate in any contact sports; my weak retinas might break away faster. Now that I was totally blind, there were no limitations; there was no more risk of me losing my remaining sight. In a sordid way, going blind had set me free. I was finally allowed to try out for wrestling. As I tapped my cane down the empty hallway toward the wrestling room, I wondered if I would be any good. When informally wrestling my brother Eddi in the garage, by feeling an ankle or a wrist, I could intuitively sense where the rest of his body was positioned. And with that knowledge, I thought I could join the team. However, my five-foot-nine, 114-pound body worried me more than my blindness: not much of a wrestler’s physique. Squeezing one bony bicep and then the other, I almost walked into a wall.
On the first day of wrestling practice, freshmen line up to face off against the captain, usually to be pinned in quick succession. I was third in line. “Ready, wrestle!” I heard, and then almost instantly, “Pinned, seven seconds,” as the first freshman’s squirming shoulders were forced to the mat. The second victim was pinned in nine seconds. Then I was up. My legs turned to Play-Doh, and I felt ready to puke. I didn’t have to do much work because I felt the strong, callused hands of the captain closing on my wrists, dragging me weakly to the center of the mat. The next moments merged together into a frenzied blur. Immediately after shaking hands, my legs were swept from under me and I landed on my back. Miraculously, I fought to my side before I was driven back again. I flopped on the mat like a fish out of water, struggling futilely. Soon the weight of my opponent crushing the air out of my lungs was too much. I heard the coach slap his palm squarely on the mat and pronounce, “Pinned, twenty seconds!” Without a pause, the captain continued up the line, demolishing each gasping opponent. No other match lasted more than ten seconds. I got up and staggered off the mat.
Coming to the first practice, I had worried about my teammates babying me. Instead, the captain had done the greatest thing he could possibly do: he had shown me no mercy as he ground my spindly body into the mat. My ribs were bruised; it hurt to breathe, but through the pain was a proud sense of elation. For the first time since I had gone blind, I no longer felt like “the blind guy.” I was the blind guy who stunk at wrestling, but stunk ten whole seconds better than any other freshman in the line.
An hour before the team’s first match, our coach learned that the varsity wrestler at my weight, one of his stars, would not be able to wrestle due to injury. He asked me to fill in, even though, in private, he remarked that sending me out to wrestle was like throwing chum to a school of sharks. I sat on my team’s side of the gym conjuring up ferocious images of my opponent. When my turn came, the captain took me by the arm and led me to the center of the mat. I shook my opponent’s hand and noticed the grip. It was softer, unlike my captain’s grip, which was hard, callused, sinewy, and could snap all the fragile bones in my hand.
The match was almost even, our two bodies flipping, driving, tumbling all over the mat. In the last few seconds of the final period, my tired opponent slowed down, enabling me to get out to his side and drive my arm under his armpit and over his neck in a half nelson. I got to my toes, chest driving into his side, my arm like a lever, cranking him up and over. When his body began to lift up and roll, I could hardly believe it. I expected him to suddenly reenergize, clamp down on my arm, and break my grip. Maybe he would even spin around me and score two points for a reversal. But he kept on turning toward his back, and my arm, buried deep in his armpit and around his neck, kept cranking. My arm strained. It began to tingle and go numb. I could no longer feel if any force flowed through it. Then, he was on his back, and I was driving the full force of my weight on top of him. A second before the final buzzer, I heard the whop of the mat as the ref yelled, “Pinned!” The entire gym erupted in cheers. The applause filled the room and, over the roar, I picked out the excited screams of my parents. Even my mother, who found it so hard to watch her son being bloodied and slammed against a wrestling mat, was cheering. Afterwards she told me that she had been nervously chewing her long hair and squeezing her hands together so tightly, she had fingernail marks in her palms for a week. Enveloped by the cheer of the crowd and surrounded by the pungent sweat of my teammates, I knew without a doubt that I was on the right path. Maybe, I had found the person that I had been before blindness, but when I settled on that idea, the implications disturbed me. In order to reclaim that person, I felt I would have to go back through the past, through the pain, frustration, and loneliness. How could I go back through time and erase all of that? Maybe it was better to follow the advice that my granddad had given my mother once, to look straight ahead and never look back. Maybe the best course was simply to set myself in motion, to propel myself forward, and somewhere along the way, I might stumble upon a new person, or even many new people, who would take my soul, which still felt a bit empty, and cram it full of newness and full of joy.
Postscript: Erik did move forward. He weathered the early, tragic death of his mother; went on to finish school, eventually taught middle school, and coached a school wrestling team. But for that story, you need to read the book—and it is worth reading. After the Mount Everest Expedition (which is described in the 2002 edition of the book), Erik completed climbs of all Seven Summits—the highest peaks on each of the seven continents (he is one of fewer than 100 individuals to accomplish this feat). The documentary of the Everest Expedition, Farther Than the Eye Can See, is now playing nationwide with much of the proceeds going to non-profit organizations such as the National Federation of the Blind. Erik is in much demand as an inspirational speaker at school, corporate, and non-profit organization events. Despite the demands of being a celebrity, Erik never loses his focus on the importance of family—he remains close to his father; is a devoted husband to his wife, Ellie; and is the proud father of two-year-old Emma. He also continues to seek out ways to fulfill his ambition to live a life of adventure. As this issue goes to press, Erik is embarking on a climb of Mount Huntington and other nearby peaks in Alaska. In 2004, he will compete as a member of a four-person team in the Eco Challenge; the most arduous adventure race in the world.
Yes, Erik Weihenmayer is, in all ways, a worthy hero. But there is another blind hero in this story, too. In the new afterward to his book, Erik describes how the Everest Expedition came into being. Essential to expeditions of this nature is a sponsor; someone or some entity to pay the bills. In the book, Erik explains how that problem was solved:
“I had an idea for sponsorship: the National Federation of the Blind, a consumer group of blind people fifty thousand strong and with chapters in every state. Their mission was simple and revolutionary, at first angering the bureaucratic establishment of blindness professionals: blind people working on behalf of themselves, taking their destiny into their own hands. When I visited their headquarters, the president, Dr. Maurer, was immediately elated. ‘Our goal has been to associate blindness with a sense of adventure, to wipe the dust off the image of blindness. If you are successful, the sighted world won’t envision a blind person pining away in a dark room anymore, but standing on top of the world.’”
Because two blind men—Erik Weihenmayer, blind adventurer and mountain climber, and Marc Maurer, leader of the largest organization of the blind in the world—had the courage to dream, a blind man stands on the top of the World, and no one will ever think of blindness in quite the same old, dusty, dark way again.
by Michael K. Meyerhoff, Ed.D
Reprinted with permission of the author from Pediatrics for Parents, volume 19, number 7.
Editor’s Note: On rare occasions we print or reprint an article in Future Reflections that is not directly related to blindness. This article is one of them. Since Rhett Waldman uses the phrase, “self-fulfilling prophecy,” in his article—”The Rebirth of Our Son”—elsewhere in this issue, it seemed appropriate to examine the origins and meaning of this concept. Dr. Michael K. Meyerhoff; Ed.D., is executive director of The Epicenter Inc., “The Education for Parenthood Information Center,” a family advisory and advocacy agency located in Lindenhurst, Illinois. His e-mail address is <[email protected]>. Here is what he has to say about “self-fulfilling prophecy:”
One of the more disturbing studies in the field of educational psychology concerns the concept of the self-fulfilling prophecy. As part of a study, prior to the start of a new school year, teachers were given a list of the students who would be entering their classrooms. Next to each student’s name was an indication that the student was a “poor,” “average,” or “excellent” pupil. At the end of the year, the grades the students earned were compared to the ratings their teachers had been given earlier. For the most part, the performance of the students matched the level of academic capability indicated on the list.
The “kicker” in this study was that the “poor,” “average,” and “excellent” notations were made entirely at random. There was no connection between an individual’s rating and his or her past performance, test scores, readiness assessments, or anything else. In other words, it was clear that during the school year, the students lived up to the high or low expectations of the teachers rather than to their actual potential.
The implications of this study are tremendous and tragic. For generations, large groups of children have been doomed to less than stellar scholastic records due to popular prejudices and preconceived notions concerning their race, ethnicity, or gender. And countless individual kids have never been allowed to develop their capacities fully because of conscious or unconscious beliefs and attitudes their teachers acquired as the result of experiences with older siblings, comments written in their official records, or offhand remarks made by colleagues.
Obviously, it is therefore imperative for parents to ensure that their child enters any educational experience with a positive presentation—or at least with a clean slate. They should ask to see any and all files to which their child’s teachers will have access and insist that any negative indications be expunged if possible or at least rephrased in a more neutral fashion as appropriate. They also should meet with their child’s teachers and strive to clear up any misunderstandings or misconceptions that might jeopardize their child’s chances of getting a fair shake.
What is not so obvious is that parents must explore their own susceptibility to this phenomenon and rigorously avoid their own inclinations to unwittingly create problems for their child. Regrettably, human nature leads us to make “personal” comments about our children’s “performances.” All too often, this results in a temporary problem being transformed into a permanent trait.
For example, a baby starts talking a couple of months before the average age, but still isn’t walking when most of her peers are doing so. Consequently, her mother and father remark to friends and relatives that “she is very social, but not particularly physical.” The fact of the matter is that the child is exhibiting perfectly normal variations in developmental patterns and there is no reason whatsoever to make this sort of characterization. However, as time goes by, the child gradually understands and then internalizes these comments. Eventually, she becomes the non-athletic chatterbox that everyone always said she was.
A little boy is reluctant to accept the strained beets he is offered for dinner. Instead of simply saying, “He doesn’t seem to like this stuff” or “Perhaps we should give his taste buds a little more time to acquire a taste for beets,” his parents say, “He’s such a picky eater.” It is not surprising that mealtimes soon become a major struggle no matter what is on the menu.
A young girl hides behind her mother and refuses to respond when a stranger says hello. Rather than saying, “Give her some time to get used to you” or “She doesn’t seem to be in the mood for conversation today,” her parents say, “You’ll have to excuse her—she’s extremely shy.” It is not surprising that the child subsequently begins to exhibit reluctance to engage in all social interactions.
A young boy ignores his mother’s request to leave a playground. Instead of saying, “You need to work on your listening skills” or “I don’t like it when you’re disobedient,” she says, “You’re so stubborn—just like your father.” It is not surprising that the boy gradually grows into a real mule.
Of course, it would be impossible—and somewhat unnatural—to refrain from such comments entirely.
Nevertheless, it is imperative that parents make every effort to treat an episode of undesirable behavior as an aberration and to focus their remarks on the behavior itself. To the extent that they repeatedly attribute the behavior to their child’s essential nature, they must prepare to deal with a child who will ultimately become precisely what they have predicted.
Note: Pediatrics for Parents is, I believe, one of the best, most informative little newsletters about common pediatric medical topics. The articles are timely, short, easy to read, and truly useful to parents. I’ve been getting and reading it for at least fifteen years. For subscription information go to www.pedsforparents.com or write to: Pediatrics for Parents, c/o Rich Sagall, M.D., 747 S. 3rd Street, Philadelphia, Pennsylvania 19147-3324.
[PHOTO/CAPTION: Benjamin Waldman at his Braille writer.]
[PHOTO/CAPTION: Ben gets a reading lesson from his Braille teacher, Irina Chernyak.]
The Rebirth of Our Son
by Rhett Waldman
Editor’s Note: As far as I’m concerned, the word “special” is more than a little overused in the disability field. I tend to avoid the word altogether. However, in the case of Benjamin Waldman, I make an exception; Ben is special. I have more to say—especially about misapplied labels—but I think you should hear from Ben’s father first:
The school psychologist peered over her impressive desk, eyeing my wife, who sat nervously on the other side. There was no rush to speak; after all, she was the professional; her tailored clothes and severely pulled-back hair testified to her status. My wife, however, was just a parent; she could wait. The psychologist finally spoke. “Mrs. Waldman, I guess you should know the reason that I’ve asked you to come today. Did you know that your son Ben is mentally retarded and autistic?”
My wife felt as is if the breath had been knocked out of her. The rest of the meeting was a blur as the psychologist outlined our first-born son’s revised program. Next fall, he would be placed on the “autistic track.” No details were given.
When my wife came home and tearfully told me the report, we mourned together. It had taken us many years to accept the fact that while nine eye surgeries had reattached our prematurely born son’s retinas to the backs of his eyes, his vision had never come in. A steady dose of Kernel Books and other literature from the National Federation of the Blind had convinced us that blindness is indeed just a physical characteristic, and that blind people can live happy, productive lives. Now the game had changed; what little we knew about mental retardation and autism led us to believe that a bleak future lay ahead for our son.
Knowledge is power. As we began to research the diagnosis, we began to discover contradictions. Certainly, the methods of testing seemed suspect, even to our untrained eyes. In one instance, the researcher had taken a cup away from our son, with the intention that he say, “Give it back.” It was duly noted that Ben said “I need help please” nineteen times (we’ve trained all our children to be polite). But because Ben did not perform as the tester had expected, he was considered mentally deficient.
The psychologist’s “proofs” of our son’s autism were even weaker. We had discovered that autism actually encompassed a number of syndromes, such as Asperger’s. Oddly, none of these categories seemed to fit our son. True, he did (and still does, to a lesser extent) show some echolalia (the basis for the label). But his outgoing, friendly personality did not jibe at all with the withdrawn “inner world” descriptions that we found. When we brought this up to the psychologist, we received a curt, “It’s a spectrum disorder.”
The plot thickened after we applied for Ben to attend camp HASC, a summer program in New York’s Catskill Mountains for children with special needs. Moshe Kahn, the camp’s director, came to visit his married daughter in Baltimore. He also found time to interview our son and us. After a talk with Ben, Mr. Kahn turned to us and said, “I’ve read the school’s report on your son. This is a different child than what’s in that report.” Ben was accepted, and had a great summer. He became the camp mascot; he was known for his daily walks around camp, recognizing voices and greeting people by name.
The last straw came that fall. Ben’s placement in the school was a shock. His classmates were mostly nonverbal children who wore football helmets to keep them from hurting themselves. The teacher and aides spent the bulk of their time corralling their students. Whenever we dropped by the classroom, Ben was huddled in a corner—sometimes with headphones on, sometimes not—but always ignored.
Whenever we brought up our observations to the school administration, they stonewalled. What’s more, a chilling self-fulfilling prophecy seemed to be coming true; as Ben stayed in the classroom, he began to take on some of the characteristics of his new classmates. He was becoming less verbal and turning inward into his own world. He was deteriorating. Something had to be done.
A kind neighbor showed us an article about a professor Reuvan Feuerstein, a world-class authority on cognitive disorders in children. Feuerstein was best known for his treatment of a British teenage boy, who had had half of his brain removed to get rid of seizures. Feuerstein had brought the boy from a semi-vegetative state to near-normalcy. We called the magazine, got Feuerstein’s number (in Israel), and called him. There is no such thing as a coincidence; Feuerstein was due to present a keynote address at a psychologists’ convention in Washington, D.C.—forty miles from our doorstep.
I took Ben to the hotel. We arrived there just as Feuerstein, an elderly gentleman with a long white beard, was finishing his speech to at least 800 cheering psychologists. I had never seen anything like it. We managed to catch Feuerstein as he left the podium. He took us to a quieter spot, did a few tests with Ben, and declared, “This child is as autistic as I am!”
Feuerstein then invited us to spend several weeks at his foundation’s headquarters, in Jerusalem, Israel. We made quick travel plans and left. Two weeks in the Middle East passed like whirlwind days. Feuerstein’s philosophy—to search for and work with a child’s strengths, rather than concentrate upon his weaknesses—has led to creative approaches to children with special needs. Under Feuerstein and his talented staff, Ben underwent testing. The results were nothing like the reports and evaluations from the school. Instead of labels, we had an evaluation that described my son in terms of his strengths (which are considerable) and his potential to learn. (Let’s just say that the diagnosis of mental retardation was off base—way off base.) My notes from that trip are filled with expressions such as “He’s gold!”
With an evaluation in hand that portrayed a child full of capacity and potential for learning and living a normal life, we returned stateside. Now the real work would begin. In our naiveté, we thought that the school would accept the new diagnosis and go along with our plans for a changed IEP. After all, the staff there had heard of Feuerstein; his world-class reputation had reached our locale, and teachers and staff had wished us well when we had left.
We were wrong. When the school discovered that Feuerstein disagreed with its evaluation of Ben, it dug in and refused to accept the report. Ben would stay where he was, no matter what. So, we called an IEP meeting and brought in two volunteer NFB advocates—Barbara Cheadle and Loretta White. This meant war.
My wife and Ben met with Barbara Cheadle and Loretta White before the IEP meeting. Mrs. Cheadle is the president of the National Organization of Parents of Blind Children, and has advocated for parents for over twenty years. Mrs. White is a special educator and the mother of a blind daughter who also has additional disabilities. They read over the evaluations, listened to my wife, and played with and observed Ben. We had always been told that Ben would never learn to read, but our new evaluation gave us hope. They agreed. They didn’t know when it would happen, but they, too, believed that Ben had this potential. Loretta had also been told that her daughter was mentally retarded (she wasn’t), and that she would never learn to read Braille (she did).
The first skirmish turned into a four-hour battle, as the school staff tried to prove to us that Ben was as severely handicapped as they claimed. Not only did they fail, but also we received a troubling view into the back scenes at the school. At one point, Ben’s orientation and mobility specialist announced her intention to cut off therapy to him because he hadn’t progressed in a year and a half. Barbara Cheadle asked her, “What did you try with him?” It turned out that the instructor had been giving Ben one—just one—cane technique, and it hadn’t worked. She hadn’t considered the possibility that there might be other approaches. Mrs. Cheadle promised to get her up-to-date information on alternative methods, especially those pioneered by Joe Cutter, a well-known pediatric orientation and mobility instructor from New Jersey.
The second IEP meeting seemed to go better. The school staff did listen to our ideas. At the end, though, bureaucratic rigidity almost won out again. “Extended school year (ESY) services? Denied.” No reason, just, “He doesn’t meet the standards.” Loretta White spoke up. She noted that during the two IEP sessions, school staff themselves had admitted that Ben had emerging skills (which is a legitimate rational for ESY) in a number of areas. Silence from the school staff. Mrs. White reviewed the history and rationale for ESY, and explained the rights we had as parents to have a timely and thorough discussion about ESY at the IEP meeting, and our rights to appeal. In the end, they grudgingly acknowledged and approved ESY for Ben.
We had had enough of the school. With the recommendation and support of his local education agency (LEA), Ben was enrolled in our local public school’s program for the visually impaired. Almost four years of intense work in a supportive environment with teachers who believe in our son have paid off; Ben has blossomed. He reads Braille. He socializes with his classmates. Friends have invited him over. He sings in a boys’ choir and has played his beloved Casio in a live concert. There’s plenty of work left (isn’t that the case with every child?), but Ben is making progress.
One crisis two years ago proved a boon for Ben. Just after his summer IEP meeting, the city announced that the vision program was moving to a different school. We drove by. The neighborhood was foreboding; a sign saying “no drug dealing on this property” hung three doors down. The school itself was a dilapidated dump. We refused to send Ben there. The city decided to build a one-child vision program in Ben’s current school, around him. Instead of two hours a day of classroom vision work, he began to receive two hours of one-on-one vision work with Mrs. Irina Chernyak, an extraordinary teacher of the blind and visually impaired. Within the year, under Mrs. Chernyak’s instruction, Ben was reading.
In October 2001, Ben was recognized for his hard work. At the annual convention of the National Federation of the blind of Maryland, Ben was awarded the Jennifer Baker Braille Literacy Award, for “best exemplifying Jennifer’s enthusiasm and love of learning.” Ben was also cited for “keeping alive the memory of one who achieved so much in her short lifetime, despite overwhelming odds.” Ben, like Jennifer Baker, had overcome many obstacles in order to achieve Braille literacy. Ben’s Braille teacher, Mrs. Irina Chernyak, was also recognized that evening for her outstanding teaching efforts; the NFB of Maryland presented to her the Distinguished Educator of Blind Children Award.
At the banquet, we met a former employee of Ben’s first school. She took us aside and told us that by the time Ben was three, the school staff there had already unofficially labeled him as un-teachable, and had begun to treat him as such. That shook us; we had never been informed of any such evaluation. The evening turned bittersweet, as we wondered how far Ben could have gone, if his school had not abandoned him.
We aren’t experts in dealing with the system. Before anyone accuses us of stereotyping, many professionals we have met have been heroic and sincere. Our only advice to parents of special children is to educate themselves as much as possible, and never, never, give up on their children.
From the Editor, Barbara Cheadle: I first met the Waldman family when Ben was an infant, but didn’t really get to know him until, as Mr. Waldman described above, the family called me seeking help with his IEP program. I confess that despite my belief in Ben’s potential, I never predicted that he would begin reading as quickly as he did. His success has been possible first and foremost because of his indomitable character. However, due credit must also be given to his school district and to two very dedicated and skilled teachers of the visually impaired; Sarah Samuel and Irina Chernyak.
Although the labels we have for children who learn differently do not seem to fit Ben, he does require intensive special education services. The Baltimore city program for the visually impaired, under the leadership of Sharon Zervitz, is to be commended for “thinking outside the box.” They developed a program for Ben based on his observable needs—not upon misapplied or ill-fitting labels. Since October of 2002, Ben, who turned twelve this April, has been mainstreamed in a regular fourth grade classroom with about twenty other students and a full-time aide. He still spends two hours a day with Mrs. Chernyak, his Braille teacher. Ben has more challenges to come; middle school and high school are big transition steps educationally and socially. Let us hope that the school continues to do right by Ben, and offer him a program that is grounded in high expectations and one that is based on his needs—not labels.
Fluency: Helping Your Child Read and Understand
This is a publication of the Families and Advocates Partnership for Education (FAPE) project. FAPE is one of four projects funded by the U.S. Department of Education to reach parents, administrators, service providers, and policymakers nationwide with information about implementing IDEA ‘97. A primary goal of FAPE is to ensure that children with disabilities receive a quality education. The National Organization of Parents of Blind Children is a FAPE Community Partner. For more information about
FAPE publications contact: PACER Center, Inc., 8161 Normandale Blvd., Minneapolis, MN 55437. (952) 838-9000 voice; (952) 838-0190 TTY; (952) 838-0199 fax; (888) 248-0822 toll-free; Web site <www.fape.org>; e-mail: <[email protected]>.
Editor’s Note: The advice in this paper applies to Braille readers, too. It might help, therefore, when reading it to substitute the word “Braille” for “print,” and “touch” for “vision.” For some additional suggestions for parents of Braille readers, please see the editorial note at the end of the paper.
In order to be a good reader, your child must be able to do two things at the same time:
1.) decode the words on the page and
2.) understand what the words mean.
Early reading instruction focuses on teaching a child how to read single words. But being good at reading single words is not the only skill your child needs. Once your child has become good at decoding single words, he or she needs to learn to read easily, becoming a fluent reader.
Fluent readers have moved beyond decoding single words well. Fluent readers read quickly and accurately. They can read with expression. They tend to separate sentences into groups of words based on the meaning. They also tend to read many individual words automatically. They can understand what they are reading. This is the ultimate goal for reading.
It is hard to understand what you are reading when you are not a fluent reader. Researchers believe that everyone has a limited ability to pay attention when learning a new task. So, if your child needs to use a lot of attention to decode single words, there is little left over to use understanding what he or she has read. Once decoding single words becomes automatic, attention can then be turned to meaning. Fluent readers can begin to enjoy the meaning of what they read. They can move beyond learning to read. They can now read to learn.
Ask your child’s teacher about your child’s reading level. Your child will be ready to work on becoming a fluent reader when he or she is reading on the 2nd or 3rd grade level. If your child is working to become a fluent reader, there are some things that you can do to help.
Encourage your child to do more reading.
Research tells us that the best way to become a better reader is to spend more time reading. Anything you do to encourage your child to spend more time with print will help make him or her a better reader. Reading aloud to your child while he or she watches the page is also helpful. On occasion, turn on the captioning while your child is watching TV. Write simple notes to your child. The more your child reads, the more automatic reading will become. Try to be creative with reading material. Keep in mind that ANY reading is better than no reading.
Reading new materials or re-reading familiar materials both help improve fluency.
Researchers have tried to figure out what types of reading material are best for improving fluency in reading. Fluency seems to improve based on the amount of time spent reading. It does not matter whether this time is spent reading new things or re-reading favorite selections. If he wants to, allow your child to re-read his favorite book one more time. It may not be interesting to you, but it is helping your child become fluent.
Read aloud not only to your child, but WITH your child.
Research has shown that you, as the parent, can serve as a good model of a fluent reader for your child. Read out loud together with your child. This is sometimes called choral, paired, or assisted reading.
Let your child pick something interesting to read. At first, you will take the lead and your child will follow you. Point to the words as you pronounce them. Read clearly and with expression. Go at a pace that is comfortable to your child. Let him or her follow along with your voice and point to the words that you are both saying. If your child wants to read a bit alone, let him. Step in when he struggles over a word. Pronounce the word correctly and begin reading aloud together at the start of that sentence.
This method is multisensory: it combines your child’s senses of vision [or touch] and hearing with the motor activities of speaking and pointing. Done on a regular basis, this activity can help your child make big gains in fluency. While it is not always as effective as reading with a person, some children will be able to benefit from the multisensory activity of reading out loud with a recorded book-on-tape. Books-on-tape are available in many neighborhoods at the local library.
Good fluency instruction includes learning about the rhythm and expression of our language.
You or the voice of the speaker on a book-on-tape is a role model for reading with expression. By listening to expressive reading at a good pace, your child is learning how to group words into meaningful phrases. Good skill at rhythm and expression help readers understand and enjoy what they are reading.
As a parent, you can help your child become a better reader. You can do this by making reading fun and surrounding your child with text. Remember, as a developing reader, your child must do more than learn to decode the words on the page. Your child must also learn how to understand what he or she is reading.
For more information
Kuhn, M.R. & Stahl, S.A. (2000). Fluency: A Review of Developmental and Remedial Practices. CIERA Report #R2-008, Center for the Improvement of Early Reading Achievement.
Available in print from: CIERA/University of Michigan, School of Education, 610 E. University Ave., 1600 SEB, Ann Arbor, MI 48109, (734) 647-6740 voice; Web site <www.ciera.org>.
Available online at <www.ciera.org/ciera/publications/report-series>.
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Topping, K. (1987). Paired reading: A powerful technique for parent use. The Reading Teacher, 40, 608-614.
Young, A.R., Bowers, P.G. & MacKinnon, G.E. (1996). Effects of prosodic modeling and repeated reading on poor reader’s fluency and comprehension. Applied Psycholinguistics, 17, 59-84.
From the Editor: Here are a few special pointers for parents and teachers of Braille readers: 1. learn enough Braille so that you can write short notes and help with early reading problems; 2. buy or borrow print-Braille storybooks for read-together time; 3. register your child with your regional library for the blind and physically handicapped so you can borrow Braille books and books on tape; 4. find or create opportunities for your child to do paired reading with a competent blind Braille reader—adult or older student; 5. locate Braille copies of chapter books (these are the next step up from beginning reader books), and then buy or borrow the same book in print so that you can assist your child and/or enjoy reading the book together. For resource information about how to implement these suggestions, contact the National Organization of Parents of Blind Children, 1800 Johnson Street, Baltimore, Maryland 21230; (410) 659-9314 ext. 360. Web site: <www.nfb.org>; e-mail: <[email protected]>.
[PHOTO/CAPTION: Maureen Callaghan, instructional assistant, and her student Brittani Brendel.]
Teacher Recognition Letter
Maureen Callaghan, Instructional Assistant,
Nutley, New Jersey
Teacher: Maureen Callaghan, Instructional Assistant
Student: Brittani Brendel
School: Lincoln School, Nutley, New Jersey
October 14, 2002
Dear Future Reflections Editors:
I am writing this letter to thank Maureen Callaghan for the noted difference she has made in Brittani Brendel’s life.
Mrs. Callaghan has been Brittani’s aide for about three years. She helped her adjust to a new school as a pre-schooler, then moved up to kindergarten with her, and on to first grade. She is presently working with her in second grade.
I taught Brittani in kindergarten in a regular education class with three other included children with special education needs in a classroom of eighteen other children. Brittani learned how to use her cane with Joe Cutter, and Mrs. Callaghan took lessons right alongside her. She gave up her lunchtime to work with Brittani on orientation outside on the playground as well as back and forth to school. On weekends and during the summer, Mrs. Callaghan obtained permission from Brittani’s parents to take her swimming, to visit her classmates, and to museums in order to expand Brittani’s knowledge of the world around her. Mrs. Callaghan was instrumental in obtaining funds to buy a computer for Brittani that would enable her to write in Braille. Then she searched for accessible Web sites, and helped Brittani learn how to communicate with her classmates with computer technology.
Mrs. Callaghan has devoted much of her own time to help Brittani attain a firm academic foundation and, in my opinion, has contributed to the growth of Brittani Brendel in all areas.
Kindergarten teacher at Lincoln School
The primary purpose for publishing teacher recognition letters is to spotlight hard-working professionals who deserve public recognition. But these letters are more than that—they are blueprints for parents, teachers, and administrators who are often unsure about the role of the specialized professionals who work with blind students. If you know a teacher of the visually impaired, O&M instructor, teacher’s assistant, Braille transcriber, etc. who deserves a public “thank you,” please send your Teacher Recognition Nomination Letter (with, if available, a photo of the teacher and/or student) to: Future Reflections, 1800 Johnson Street, Baltimore, Maryland 21230; or e-mail to Mrs. Cheadle at <[email protected]>. Be sure to include the name and address of the sender, the teacher’s name, the student’s name, the name of the school or school district, and specific details about why this person deserves recognition. The letters should be no less than one typed page, and may be up to three pages. If your letter is published, we will send you extra copies of the issue free of charge at your request.
[PHOTO/CAPTION: Barbara Pierce]
Clothing, Grooming, and Social Acceptability: Part 1
by Barbara Pierce
Editor’s Note: Barbara Pierce is the editor of the NFB’s monthly publication, the Braille Monitor, and the president of the NFB of Ohio. She has conducted many national workshops for parents and teens on the topic of social skills. Her most recent contribution to Future Reflections was the article, “Please Pass the Manners,” published in volume 20, number 3. In this two-part series, she has teamed up with long-time Federation leader, Steve Benson. Mr. Benson’s article will appear in the next issue. Here, now, is what Barbara has to say:
I live in a college town where students dress any way they please, and we have all become resigned to green hair, bizarre fashions, and dirty feet and fingernails. We dismiss these as Oberlin students being Oberlin students, and we know that in ten years they will be running social service agencies, treating sick people, becoming pillars of law firms, and otherwise helping the country to move forward.
Unfortunately, unlike college students blind kids do not have the luxury of being oblivious to social expectation. At least, if they choose to disregard convention or flout social expectation, they are not laughingly excused but condescendingly dismissed on the grounds of blindness. They are presumed not to know any better or to be doing the best they can.
That’s why it’s important that parents and family members do whatever they can to teach blind youngsters how to take care of themselves, to make a good appearance, and to behave in ways that will not embarrass them. Accomplishing these goals is a challenge, particularly when the child has no useable vision or has unreliable sight. As with so much else in bringing up a blind child, objective feedback and consistent pressure to maintain standards are requirements of the job.
Some years ago a blind student entered Oberlin College and immediately made himself an outcast in his dormitory. He had no interest in giving himself or his clothing a bath, and his roommates soon began to resent his life style. By the time they turned to the head of a local blindness agency for help, things must have been desperate. Oberlin College students are not a squeamish bunch, and they are pretty determined to let others go their own way without objection. Things must have been pretty bad for the young men to seek advice. The agency director asked the three what they would do if the offender were sighted. Their answer was immediate. They would throw him, clothes and all, into the shower with a bar of soap and prevent him from escaping until the worst of the dirt was gone. The director suggested that they do exactly that with this student. The fellow never became socially popular, but I gather that he did get the idea that bathing every few days was a good idea. In the hope that there are easier ways of teaching these important lessons to blind youngsters, I offer the following advice.
At three my granddaughter is beginning to choose what clothes she will wear each morning. She and her mother do a lot of talking about colors and what goes together. Miranda is not to be trusted yet, but the conversations that will eventually teach her what works and what does not, what is attractive and appropriate, have begun. For blind children, too, this talk must begin early. They must learn how to recognize various pieces of clothing by touch as well as what things go together.
A good way to teach a blind child how to recognize the items in his or her wardrobe by touch is for the parent to try folding the laundry in the dark. If you can learn to distinguish between items by touch, you can teach your child to do so. You may find that some pieces are truly indistinguishable. In this case they must be marked tactilely in some way or sorted by sight and then stored in different places. I will not go into methods of marking clothing; a number of good systems exist. You will have to determine which works best for your family.
If the child cannot distinguish colors or does not see some colors well, you must teach the rules of color coordination by rote: plaids and stripes don’t go together; different prints should be kept apart unless they have been designed to go together; check with someone reliable to be sure that different shades of the same color are harmonious; some colors go together, and some do not. These are very important lessons for the blind child of either sex to master. If you are having trouble convincing your child of the importance of such information, solicit the aid of a blind adult friend to second your views. Just be certain that you choose a blind person who dresses well to help you.
This whole process is long and complicated. Children vary in their patience with learning such information and their willingness to apply it. It is important not to give up on the project and simply continue to lay out your child’s clothing with no involvement in the process by the youngster. Insisting that your blind child help with folding clean clothes and hanging garments on hangers will provide opportunities for talking about color, design, wear and fading, stylishness, wrinkling, and other matters of dress. I have met blind ten-year-olds who can put on a dress shirt but not button it on a hanger. When I see this, I know that the child has never been confronted with managing personal clothing.
Like everyone else parents vary in our ability to muster interest, common sense, and a sense of style for our own wardrobes as well as for those of our children. We also have varying amounts of money to spend on clothes. I am not suggesting that parents of blind children should spend money they do not have to make sure that their children are well dressed. But I would urge those who have little interest in clothes to find a friend or family member to help with this part of their child’s education.
Thrift stores are a gold mine of bargains for those who can spot them and enjoy the search. These are not great places for blind people to shop on their own since one can never be sure about stains or other problems that may not be apparent by touch. Even today I do not shop for clothes alone. I know which of my family and friends have taste I can trust. I tell one of these women what I am looking for, and they go through catalogues or hunt through racks of clothing with me in the stores I have come to patronize. This shopping can be done with store personnel, but a blind person is living dangerously unless the clerk or shoppers’ assistant is already known and trusted. Such methods are only for adults. Blind youngsters should be consulted in shopping but guided by someone with good taste.
Once the clothing has been purchased and can be identified or has been labeled, the question arises of maintaining it. Blind children may be somewhat more motivated to deal with soiled clothing in an orderly way since finding the lost Snoopy sock or the plaid blouse is harder in a room full of dirty clothes when you can’t see something peeking out from under the bed or draped over the bookcase. I trained all three of my sighted children to pin their socks together because it was easier for me to do the laundry that way. As a result they all lost fewer socks. With older blind children it is a good idea to begin pointing out stains and teaching them to deal with them. If a safety pin or piece of tape is placed on a stain, the child can apply one of the pre-wash sprays before putting the garment into the dirty clothes hamper or down the chute. (Elsewhere I have described my tricks for doing laundry, “This Is the Way We Wash Our Clothes,” in the Kernel Book, Remember to Feed the
Mastering the details of good grooming is also an evolutionary process. Young blind children who are not bathed frequently will not grow up understanding how important bathing is. If a blind child’s hair is not kept clean and neat, he or she will not get used to what clean, combed hair feels like and will never learn to appreciate it or do it for him- or herself. So parents must begin by doing these tasks, talking about their importance, and teaching their blind children to do them for themselves. Young hands have to learn what it feels like to lather a washcloth, use a nail brush, and shampoo and rinse hair.
Brushing teeth is another skill and grooming aid that some blind people never take seriously. I grew up before dentists urged patients to have their teeth cleaned by a dental hygienist once or twice a year, so really clean teeth were not part of my everyday life. I remember the moment I discovered that the furry little jackets of plaque were not intended to be a permanent part of my teeth and that this stuff was what I was supposed to be removing with my toothbrush. In this case it was a matter of training my tongue to notice food caught between my teeth and the scum building up on them.
From there it was easy to keep my teeth clean, but more than once I have heard a sighted person comment with distaste on the unpleasant appearance of a blind person with yellowed or dirty teeth and food lingering between them. Again the problem is that the blind child who is never taught what a clean mouth feels like and how to detect the need to brush teeth will never be sensitive to this part of good grooming.
As girls approach their teens, they have to find a hairstyle that is flattering. Often parents settle on what is simplest rather than considering what is most attractive. For many young women the hair dryer and the curling iron provide a rite of passage. There is no reason why blind girls cannot learn to use these tools as well. They just need to learn what hair feels like when it has been properly styled. If a girl’s hair is left long, she must learn to wash it frequently and keep it neat and under control.
Make-up is another challenge that parents often ignore. Because blind teens cannot reliably check whether their make-up is properly applied, they should be taught how to apply it and warned against wearing too much. Until they are quite expert in applying it, all blind women are wise to have someone check their make-up and give them feedback about streaky foundation, smudged mascara or lipstick, or too much blush or powder. I have not yet met a blind woman who can successfully apply nail polish. Maybe some people can do it by touch alone, but I certainly cannot, not on all ten fingers.
I will leave most of the discussion of appropriate dress and grooming for young men to Steve Benson in Part 2 of this series, but I wish to comment in passing on the importance of teaching blind boys to tie their own ties. I am not sure which would be more embarrassing for a young man: asking others to tie his ties for him or having to choose from the narrow selection of clip-on business ties. I can remember teaching at least one of my blind colleagues how to tie a tie. I had no particular trouble doing so even though he has mild cerebral palsy. But then, since my first boyfriend had taught me to tie a tie so that I could tie his for him, I knew it was not a difficult task.
A word should be said about dressing appropriately. Usually blind people do not have the luxury of observing what others are wearing at various functions, information that shapes the future clothing decisions made by most people. Parents can help by providing observations about the way other students are dressed at various social events. Staying abreast of current fashion trends is another task that siblings and parents can help with.
As an adult I feel most secure dressing slightly up. Today lots of women wear slacks to church; I may wear a pantsuit to church when the weather is very cold, but the rest of the time I wear dresses or skirted suits. Not every blind woman would make that choice, but this is an example of my choice to aim at the upper end of the appropriate range of style. One would look startlingly out of place wearing formal evening clothes to a picnic. But wearing wash pants when jeans would do or an open-neck dress shirt when a sports shirt would be fine is appropriate and keeps one appearing to advantage. It also helps to educate those who presume that blind people necessarily dress inappropriately and rather badly, which is an important consideration for me.
Children must be taught to think about such matters, and teaching them to do so is part of a parent’s job. This is one of those areas in which most sighted youngsters absorb the information almost unconsciously, but acquiring it is necessarily intentional for blind kids.
I am using this term to encompass all those conscious and unconscious skills and habits that enable us to fit in and feel comfortable in a group of friends or strangers. All people vary in their ability to fit in and even in their desire to do so. We need not force all blind youngsters to become social butterflies. However, it is important to make sure that their manners and habits do not put people off and prevent them from getting along with others where and when they wish to.
Begin talking with a group of parents of blind children, and the conversation will inevitably turn to helping children control the repetitive and distracting actions often called blindisms. Sometimes these activities are unique to blind children, like eye pressing; sometimes they occur in other populations as well but are still identified as blindisms when a blind child engages in them. If the behavior distracts and bothers other people, it is probably worth working to control. Lots of research and discussion focus on this aspect of socialization, so I am not going to spend time on it except to say that your child will thank you later if you exert the energy now to distract him or her from such actions and find ways of encouraging self-monitoring to eliminate it.
All blind children can benefit from activities that help them learn to move and interact with others. I am a great believer in gentle roughhousing. I mean the kind of fun play with a parent that can tumble a child around and allow him or her to climb, roll, swing, and learn how to balance and slide and have physical fun. Too many parents deprive their blind children of this activity and thereby make it hard for them to learn about their bodies and how to move with ease and confidence.
Lots of the early teaching about socially acceptable behavior can be done through play. Games can sharpen a blind child’s ability to notice from what direction sounds are coming. This teaches him or her how to look at a speaker, one of the very important skills for blind children to master. By the way, you can help your child by quietly turning him or her to look at the speaker when he or she is not doing so. Having contests to walk balancing a book on the head reminds all kids of the importance of standing straight and tall. It also helps blind children resist their tendency to lead with the head.
The important thing is to remain mindful of a blind child’s drift toward inappropriate behavior. Many parents yield to the strong temptation to excuse their child because he doesn’t know better or they don’t have time and energy to correct her. Here are some habits that are easier to nip in the bud than to break once they are well-entrenched: invading other people’s space while talking, investigating other people tactilely, interrupting others’ conversations to talk about self or recite memorized material, exploring or stimulating one’s own body in public. The test of whether or not a child’s behavior is inappropriate is to consider whether or not sighted children of the same developmental level engage in those actions and notice the way people react when the blind child engages in such behavior.
The young blind person who dresses and behaves appropriately and is well-groomed and confident in social situations is well on the way to becoming a confident, poised adult. No child ever masters all of these skills easily and naturally. Civilization must be imposed on all of us, and both parents and children suffer in the process. Learning to behave considerately and politely takes tenacity on the part of parents and hard work on the part of blind children particularly, but the benefits last a lifetime.
Growing Up and Going to Work: Preparing for the Workplace Begins at Home
Reprinted from the Summer, 2001, issue of the Pacesetter, a publication of the Pacer Center, Inc., Minneapolis, Minnesota, under the title “Preparing for the Workplace Pays.” The article is an excerpt from When I Grow Up, I Am Going to Work, a PACER Center Project Youth book for children; Diane Hovey, project coordinator, and Caryn Pernu, editor. The booklet may be purchased from the PACER Center at $8 per copy ($6 for 10 or more). For more information contact the PACER Center at 8161 Normandale Blvd., Bloomington, MN 55437-1044; (952) 838-9000 voice; (952) 838-0190 TTY; (952) 838-0199 fax; www.PACER.org
Editor’s Note: This is a companion piece to the article, “Of Jobs, and Jobs” by Patty Chang. I think the connection will be obvious after you read them. Here is the excerpt from When I Grow Up:
Parents may feel mixed emotions about the child with disabilities growing up and going to work. They may share the child’s excitement about future possibilities, but they may also worry about the child’s vulnerability of possible failure at a job. Helping children develop job skills is one of the biggest gifts parents can give because it enriches children’s sense of self and builds potential for their future.
How can parents assist their young children to become ready for work? Here are some helpful ideas:
1. Teach social skills
More people lose jobs because of personality conflicts and the inability to work with other people than for any other reason. Providing children with opportunities for social interaction is very important. Preschool groups, religious groups, scouting groups, and community recreation programs are examples of good places to learn social skills.
2. Give children specific chores
Parents can help their children choose chores they can do with little assistance. Even children who have physical limitations that require assistance can still be given chores. For instance, the tray on a wheelchair can be used to deliver dishes to the table or folded laundry to the correct room. Occupational therapists can provide assistance if adaptations are needed to accomplish the chore. Not only will children be proud of their work, but they will also be contributing to the needs of the family.
3. Provide daily opportunities for children to make choices
Parents can start by asking children to make simple and familiar choices such as what to wear or what to eat. They must be sure the choices are ones their children are able to make and be careful to avoid offering options that are not possibilities. At first, parents can limit options by offering children a choice between two items. Later, the number of options can increase as children develop skills.
4. Teach communications skills
Children need to learn communications skills, as well as how to express feelings in a socially acceptable way, take criticism without becoming outwardly upset or angry, cooperate with others, ask for help when needed, and ask for more work once initial tasks are complete. Role playing can be an effective tool in learning communication skills.
5. Help children identify interests
Parents can provide opportunities for a variety of activities so children can explore different interests. Hobbies are an enjoyable way to learn skills and can lead to job opportunities. Children who like sports, for example, may eventually work in a sports store or at a camp.
6. Keep a notebook
Parents can keep a list of their children’s interests and the places where they seem most comfortable. Parents can also note their children’s skills and strengths and what motivates them to follow through on their tasks. In this way, parents learn more about their children and also better see the progress their children make.
7. Help children to be punctual
Parents can teach their children to set an alarm clock and wake up on time for school. Children can learn to prepare for the next day by laying out their clothes the night before. Parents can assist their children in calling if they cannot attend an activity.
8. Allow children to experience natural consequences
Parents often want to shelter their children from any pain or sadness, but this is a natural part of life for children with disabilities as well. When children make a choice and it turns out to be a bad decision, parents can provide the opportunity for their children to learn about natural consequences. Everyone learns from mistakes. Parents can be there to support their children but let them make mistakes and learn from them.
9. Talk to children about jobs
Parents can talk to their children about different jobs. They can point out what people are doing in their jobs and ask their children’s opinions about the tasks. Children can visit their parents’ workplaces and help.
10. Encourage volunteering
Volunteering can teach children much about what is expected at work without putting too much pressure on them. Volunteer experiences provide opportunities to learn job skills, meet new people, learn to communicate with people who are not used to being with people with disabilities, and learn to do a task in a certain time period and do it well. It is a great opportunity for career exploration.
11. Promote self-advocacy
By providing choice and opportunity and teaching decision-making skills, parents are helping their children build a foundation for self-advocacy. Parents can teach their children about their disabilities and how to communicate their needs. They can provide opportunities for their children to express their thoughts and opinions and exercise control over their environment. Later in the workplace, these skills will assist young adults in asking for what they need, especially for any special equipment or necessary changes to the workplace that will help them better do their jobs.
Starting early in preparing children for work will ensure they have better opportunities to be successful in their employment. Most importantly, parents can expect that their children will grow up to work, and they can help their children build dreams.
A pen pal program for blind Braille reading students who want to write and receive Braille letters from other students.
Mail to: SLATE PALS, 5817 North Nina, Chicago, Illinois 60631 or [email protected]
SLATE PAL PROFILE
Name__________________________ Age_____ Birth Date______ Grade______
(circle one) *male *female
Address________________________ City____________ State____ ZIP________
E-mail:____________________________ Phone __________________________
I would like (fill in the number) _______slate pal(s)
I would like my slate pal(s) to be ___________age (please specify a range)
I would like my slate pal(s) to be (circle one) *male *female *no preference
Sponsored by the National Organization of Parents of Blind Children
Of Jobs and Jobs
by Patti Gregory-Chang
Reprinted from The Braille Examiner, Spring, 2000, the newsletter of the NFB of Illinois.
Editor’s Note: Patti Gregory-Chang is a high-energy, talented individual who deftly combines a career, motherhood, and active service to her community. She has a husband, two kids, is the Secretary of the NFB of Illinois, is active in the Chinese community, and has worked her way up the career ladder for twelve years as an attorney with the city of Chicago. She knows what it takes to succeed in the work world. Blind since the age of thirteen from a congenital syndrome that includes glaucoma and cataracts, she uses Braille, magnifiers, and an array of technology devices. Perhaps her best asset, however, is a tough-minded capacity to examine issues critically. Here is her assessment of the job situation of the blind:
Recently, a blind friend and I were discussing the underemployment of blind people. I took the unpopular stance that our underemployment is only partially the result of discrimination. My friend suggested that I throw my ideas out into the public arena for debate.
We often hear that seventy percent of the blind are unemployed or underemployed. The implication is that discrimination bars us from employment and advancement. My experience leads me to only partially accept the premise. Part of our unemployment and underemployment results from discrimination, but other factors play a role too.
We as blind people fail to create opportunities for ourselves and sometimes wait for things to happen to, or for, us. We become conditioned to wait for someone to arrange things. Blind children are taught to “wait” for someone to “help,” and they often carry that attitude into adulthood. But this is just not how the real world works.
Remember that Dr. tenBroek [the blind founder of the NFB and renowned Constitutional law expert] took his first position without pay to prove to the employer that he could perform the work. Volunteerism is a great way to “get your foot in the door.” Internships and fellowships serve the same purpose. Starting a business avoids the need to be hired altogether, but I see few blind people who are willing to start their own business.
When I hire new employees, I look at all factors—all factors—employment history, extra-curricular activities, and academics. I hire those who sought out opportunities, not those who have performed at minimal levels and waited for things to drop into their laps.
Recently a woman applied with my office who had wonderful academics and obviously expected to be hired. I asked her where she worked in college. She responded by telling me that her financial aid office did not find her any work-study. She did not receive an offer because we do not want employees who need to be “led by the hand.” Her posture of expecting financial aid to find her a job, made it clear that she would need to be directed towards any work which needed to be done and would not take initiative.
Once one has a “foot in the door” the work can’t stop. If one wants advancement, again it must be actively sought out. The area where blind people must learn to excel is in seeking out responsibilities and opportunities. Employers remember those who volunteer to do additional work. I have in the past volunteered to take over collections in my law office and to manage all appeals. This was daunting, but my chief later told me that my willingness to take on those projects contributed substantially to my promotion.
A new employee of mine developed a training manual on his own. He asked me if that would be alright. Of course, I said ‘yes.’ Other employees have asked to arrange the Christmas party, or help with organization charts. There is always work to be done, and these opportunities are limitless.
A related issue arises when one is passed up for promotion. Some see this as an indication that they were, of course, discriminated against. They get discouraged and do not apply again for a higher position. Remember that most people are rejected on their first try at a job or promotion. I have seen lawyers who keep a bulletin-board of bounce letters, but they keep applying. We need to be determined, and not resort to “discrimination claims” for each rejection.
Determination and initiative result in hiring and advancement. We cannot simply expect employment to be given to us as an entitlement. We must actively seek it out.
Passivity leads to dead-ends and chronic unemployment.
[PHOTO/CAPTION: Robert L. Newman]
Of Blind Kids and Tree Houses
by Robert L. Newman
Editor’s Note: Robert Newman is a sincere, creative, and thoughtful person who has found a way to use his talents to help others explore the diverse and often thorny issues which surround the adjustment to blindness process. The work he does in creating and maintaining THOUGHT PROVOKER is, by the way, a hobby for Robert. He is a professional vocational rehabilitation counselor, and for the past twenty-nine years he has been with the Nebraska Commission for the Blind and Visually Impaired. Here is Robert’s introduction, followed by one of his THOUGHT PROVOKERs:
Hi, I am Robert Leslie Newman, the author and moderator of the Web-based discussion forum about blindness called THOUGHT PROVOKER. Some of you may have either visited my Web site or seen my posts on various blindness-related listservs (my URL is whitsacre.info/vip and the site name is Adjustment To Blindness And Visual Impairment). I am very happy to have this opportunity to present information about my forum and Web site to the readers of Future Reflections.
Here’s the “what” and “why” of THOUGHT PROVOKER.
First, the “What”: THOUGHT PROVOKER is an e-mail/Web site discussion forum. Each Provoker presents a short scenario encapsulating a specific issue of blindness. I send the scenario out to a forum list and over the following week people respond. I compile the responses into a single message and send them back out to the list the next week. This goes on for four updates/weeks. On the date of the fourth update, I also send out a new Provoker. All Provokers, including the weekly update are available upon my Web site.
Now, here’s the “Why.” THOUGHT PROVOKER is a blend of three of my most favorite things to do. Number one: I like educating people about blindness. The fact of the matter is, being blind isn’t as hard as most people think it is. We humans are smart, adaptive, and can adjust to vision loss in good style and grace. But most people don’t know this! And stories—fiction or non-fiction—are one of the ways to educate people to this reality.
Which brings me to reason number two: I love stories! I love reading them and I very much enjoy writing and telling them, too. I have discovered that what I write best is fictional accounts of people in situations where blindness is an issue. The license I have as an author allows me to set the scene and move the characters through it; showing not only the action but, more importantly, what the characters are thinking and feeling.
Number three: I am fascinated by the computer and the Internet. With the advent of the computer, writing has been made so easy for all of us and with the capabilities of speech output, well, need I say more about the potential of this tool? Furthermore, with a refreshable Braille display and the Internet, all the world is available in Braille.
When I became comfortable surfing the net, I searched for blindness-related sites and came to the conclusion that there was a nitch for my type of creativity. In September of 1998 with the help of a blind computer programmer at Creighton University, I learned HTML and put up my first Web page. I am responsible for creating and maintaining all aspects of the site. There are two sections on the site: a section for THOUGHT PROVOKERs (scenarios with responses from forum members) and a short story section. The stories have main characters who are blind and are dealing with adjustment to blindness and life. I and other guest authors write the stories. (Note: I am always looking for additional pieces by other guest authors).
There are presently 67 PROVOKERs available upon my site that people may read and respond to. The forum presently has over 490 members from five continents. Forum members are people who are blind, family members, professionals in the field of blindness, and other interested sighted persons (such as employers, etc.). Anyone can join; just e-mail me at [email protected] and ask to be added to the THOUGHT PROVOKER forum list.
Editor’s Note: The following THOUGHT PROVOKER is an example of Robert’s work. The responses we have published are an edited selection from the considerably longer list from Mr. Newman’s Web site. Since we are approaching the summer season, it seemed appropriate to select a story about a blind child and a tree house. Here it is:
THOUGHT PROVOKER 66
Because I Love Her
Last Updated 04-06-2003
To Provoke Thought Is The First Step To Beyond
“I’m Miss Grant. I called you to make a home visit from the office of Adult and Family Services. Are you Mary Wilson?” she inquired pleasantly of the woman that opened the door. The social worker was following up on a report of possible child abuse.
“Yes, please come in,” responded the woman turning to lead the way down a narrow hall to a small neat kitchen. “Would you like a cup of coffee?”
“Thank you, but, no. Is your daughter here?”
“Oh, of course. Heidi, come in here, sweetheart.”
A quick step was heard moving almost in a run from the front of the house. A small girl skipped into the room. Her cherubic face was surrounded by a cloud of blond curls. Her wide gray eyes seemed to gaze through Miss Grant.
“Yes, mommy?” inquired the child with a smile.
The social worker noted that the girl’s right arm was in a cast, but there were no signs of neglect in the shining clean hair and rosy face. “Hello, Heidi. I am Miss Grant. Will you answer some questions for me?”
“It’s ok, honey, tell the lady anything she wants to know,” instructed the mother.
“Heidi, how did you hurt your arm?”
A look of embarrassment crossed the little girl’s face. “I fell out of my tree house. I was trying to touch a bird I could hear singing and he was too far away. I leaned out and fell down.”
“You climb up in trees!”
“Sure, my daddy built me a house in our big tree for my birthday before he went away to heaven,” answered the child. “He said I’m the best tree climber he ever saw.”
“Will you show me the tree house? I’d love to see it.”
“Okay, come on!” replied the child turning to dart out a back door.
The social worker followed and found herself in a small yard dominated by an ancient oak with broad thick branches. The child scampered ahead and clambered up a slanted ladder disappearing into the thick foliage more than ten feet overhead. Miss Grant had seen many things in her life, but what kind of mother allowed a blind child to climb trees?
“Come on,” called the cheerful voice from above.
Miss Grant slowly placed her foot on the bottom rung and climbed after the girl. The ladder ended at a platform surrounded by a three-foot high railing. A small bench and table were in one corner and a set of shelves with a cupboard below was in another. Battered plastic dishes and old empty butter tubs lined the shelves and a Braille book lay open on the table. “This is a lovely place, Heidi.”
“Yes, some of the other kids come and ask to play with me up here,” Heidi said. “They never did before daddy built it for me. I can’t play ball and stuff, but they like to play in my tree house,” she stated proudly.
Driving away, Miss Grant thought over what she had seen. This was going to be a hard report to write. How did you explain the differences between negligence and love that gave a disabled child the room for growth and normal child development?
… I guess we were lucky no Social Worker was called on us. Our daughter, Allison (now 20 and in college), also fell out of her beloved (and father-built) tree house when she was young! Ironically, although she had climbed down from it many times before, she had a sighted friend teach her to climb down the steps a different way, and fell and broke her arm doing so! Darn sighted friends! …
When I first started in this field, I was teaching young adults. Since I had no parents come to parent interview night, [I] was assigned to supervise in our mini-gym where one NLP kid was playing on the stall bars and giving me panic attacks. His mother slid beside me and whispered, “Just don’t watch. That’s what I do!” It was excellent advice...
Yes, yes, yes!!! This is WONDERFUL!!! My daughter (almost seven) went to a birthday party this weekend where there was a great tree house. The birthday kid took her up, showed her around, and left her to enjoy with the other kids. Now she’s begging for one. …
I think the mother and father in the story did the right thing. The tree house also brought sighted kids over to play with the little girl. This allowed for more “normalization.” It’s my opinion that the social worker needed to adjust her thinking. …
… I think there must be a balance. Blind children do have to do some things differently and do have some unique needs. Sometimes, safety must be considered as it relates to them. [When I was] learning to crawl … my dad would toss pillows into my path if I was about to crawl headfirst into a hard object. … I crawled off the edge of our porch and fell down the steps once. Accidents happen even with the most diligent parents, but a blind child has to be allowed to take risks and engage in normal behaviors within reason. Parents should not treat their kids like fragile flowers …. Sometimes, I think parents think too much about their own needs and discomforts than about what is good for their child. This is unfortunate.
The whole issue around helping is an extremely confusing one. If parents don’t figure out when help is necessary and when it isn’t, and choose either extreme, never helping or always helping, there can be problems. …
I wish that my parents had been a little more positive when I was a kid. I wouldn’t have grown up to be the useless burden on society that I have become.
This is a tough one! Tough because most parents of a blind child will not have had an opportunity to learn about blindness, so they will naturally want to protect their child. …
As a teacher of blind and visually impaired students I … applaud the efforts of these parents. … Providing these types of opportunities allows [blind children] the opportunity to experience things that their peers are also interested in, [and thereby] fosters friendships. As for the social worker—she just received a lesson of a lifetime!
I am totally blind. I never had a tree house, but I can truthfully say that my parents encouraged my independence. … I am convinced that it is because of things just like this story describes that I am successful within the sighted community. I am fifty-three years old, and minister of a church ….
I think my mother and father would have been horrified if they had been investigated by social workers …. I played ball …, climbed trees, … jumped into streams and rivers… Sure, there were cuts and bruises, but no major or permanent injuries. I cleaned house, fed … farm animals, cleaned out chicken coops and rabbit pens, … did the dishes, and learned to cook the same as my sisters did. Did it hurt me? Certainly not! What it did was make me the self-sufficient, confident, productive person I am today. At thirty-nine, I am employed and have been since I was fourteen. … Blind children are children, not special little breakable toys that need to be put on a shelf somewhere until someone carefully brings them out.
I had a tree house growing up. …. My parent’s favorite answer, to the question, “Mom and dad can I do this?” was “Your insurance is paid up. Go ahead, just don’t kill yourself.” … When I was younger my legs would be black and blue all summer from all the spills and things I ran into, or the games my brother and I would play…
[PHOTO/CAPTION: Sharon Maneki]
[PHOTO/CAPTION: Carol Schaum]
[PHOTO/CAPTION: Samta Singh]
[PHOTO/CAPTION: Karen Herstein]
[PHOTO/CAPTION: Mildred Rivera discusses college transition topics with Kevin Hatton Jr. during a transition club session.]
[PHOTO/CAPTION: Amy Herstein and Gary Kammerer take notes at a transition club meeting.]
by Sharon Maneki, President
National Federation of the Blind of Maryland
The National Federation of the Blind is a vibrant organization that continues to evolve to meet the changing concerns of blind persons and their families. Just as we have seen an increase in family activities at national convention as more parents of blind children become involved in our movement, I have seen a similar trend in Maryland. As children grow toward adulthood, we are challenged to find different activities to meet their needs and interests. As blind children advance to become teenagers in the movement, they no longer wish to attend the Christmas party with Santa. They want to move into the adult world of independence and work.
Parents and blind youth in Maryland have caused the NFB of Maryland to grow by encouraging us to create a transition club for both blind youth and their parents. In the student transition club, we talk about finding a job, advocating for yourself, hiring readers, giving directions to drivers, and other practical tips that blind adults use to function independently in the community. While the blind youth are in their group, parents share their experiences with each other on chores their children have or should have, the function of readers, how to teach responsibility, and more.
Many school systems may offer transition services. In reality, teachers of the visually impaired must concentrate on academics and frequently do not have time to provide practical experience. Our transition club is unique because blind adults serve as resources for both students and parents. Blind adults are able not only to talk about skills, but also are able to demonstrate these skills.
Transition club meets monthly from September through May. We meet before the NFB Greater Baltimore Chapter meetings to encourage parents and blind youth to participate in the chapter as well. Topics are determined from input by students, parents, and blind adults who observe the youth. We try to incorporate practical experiences for both parents and blind youth. For instance, blind adults and students took a cab ride together so that the blind youth could observe the interaction between the blind passenger and the driver. In one session, under the instruction of a blind adult, parents donned sleep shades (blindfolds) and did some cooking so they could learn the non-visual techniques for independence in the kitchen.
The Transition-to-Independence club is open to junior high and high school students and their parents or other family members. Currently, we have fourteen families who actively participate in the club. Parental involvement is important so that skills or techniques learned in the sessions can be practiced at home. Parents are often given “homework” assignments after a meeting. As a result students have independently planned and executed transportation to an event by cab (or sedan service), and made purchases in a convenience or grocery store while mom or dad waited in the car. Parents report an increase in independence in the home and improved social skills at school.
One of the unexpected benefits of the program is the bond that is created among the students. They call and e-mail each other during the week to discuss schoolwork, technology problems, or just to talk about whatever teens talk about with each other. These friendships have helped the students gain more confidence in their ability to make friends with sighted peers.
Thanks to grants from the local Wal-Mart and the Friends of the Maryland Library for the Blind and Physically Handicapped, we have also been able to occasionally provide paid work experiences for the students. Students have discovered that even labeling and stuffing envelopes requires dexterity, attention to detail, teamwork, persistence, planning, speed, accuracy, and the ability to solve problems and work out non-visual techniques for work tasks. Because the work tasks are set-up, supervised, and managed by blind adults, they learn through observation how blind people solve work-related problems—especially those that involve using print.
The transition club has been challenging and fun for all. To help with this article, I asked the participants—parents, blind adults, and students—to make some general comments or to describe a favorite club activity from the past year, and what they gained from it. Here is a selection of those comments beginning with a description of the blindfold cooking activity for parents. The instructors for the cooking activity were Ann Taylor, a blind member of the Greater Baltimore Chapter and a technology instructor at the International Braille and Technology Center for the Blind; and Barbara Cheadle, editor of Future Reflections and the sighted parent of a very competent twenty-five-year-old blind cook, Chaz Cheadle.
Setting: The Harbor Room and second floor kitchens at the National Center for the Blind. These kitchens are designed and equipped like any modern kitchen in the average home.
Cooking assignment: To fix Jell-O with fresh fruit (apples and bananas). Cooking tasks required: opening packages, measuring liquids, chopping fruit, boiling water, pouring, stirring, carrying a container of liquid Jell-O, placing the container into a refrigerator, and cleaning up.
Procedure: The ingredients were purchased in advance and the instructors made sure that all necessary cooking equipment was in the kitchen before parents arrived. Parents wore sleep shades (blindfolds) throughout the activity—including cleanup. For safety reasons, the instructors guided the parents through a tactile examination of the stove before they began cooking. The goal was not to teach cooking skills (we assumed the parents already knew how to cook), but to help the parents discover through guided experiences the non-visual cooking techniques used by competent blind cooks. The instructors gave minimal guidance and suggestions so the parents could proceed safely, but did not prevent them from experimenting with awkward or less efficient methods. After the activity, the instructors guided a discussion about what had been learned, compared techniques, and answered questions about how to help blind youth become more skilled and independent in the kitchen.
Observations from Carol Schaum, grandmother of Courtney Despeaux:
When I was first blindfolded, the kitchen seemed larger than it was. This was probably because I was hesitant and cautious in my movements, and it took me longer than usual to move from place to place. I discovered small things that I hadn’t noticed before, like the fact that the handles on the stove knob could be used to tell how to adjust the temperature of the burners (when the raised ridge on the knob was vertical, the burner was set on medium, etc.).
We were instructed to make Jell-O with fruit. When I put the pot on the stove, I made sure that I positioned the handle of the pot so that it extended over the counter so that once the pot was hot, I could reach over the counter until I found the handle, thus preventing burning myself. I pre-measured the water before I boiled it. Then, instead of dumping the boiling water out of the pot into a bowl, I poured the Jell-O into the pot. I held a spoon on the rim of the pot and extended it about halfway across, then dumped the powdered Jell-O onto the spoon to ensure that it went into the water.
After the Jell-O had dissolved in the hot water, I added the cold water and then I dumped the liquid into a large serving pan. I cut up the fruit on a plate and scooped it into the Jell-O with my hands so that I could feel around the plate and made sure I didn’t miss any of it. I stirred the fruit and Jell-O together. During this time I also dragged the trashcan over to the counter to make clean-up easier (I did this only after I had walked back and forth across the kitchen several times to throw things away).
I examined the inside of the refrigerator to see where there would be room for my Jell-O, then put the pan on a tray and carried it over and put the pan of Jell-O in the refrigerator.
After it was over and I removed the blindfold, I was surprised to see that there was still fruit left on the plate that I thought I had examined, and the fruit in the Jell-O was not well mixed at all but was mainly clumped in the center. I also realized that I had overlooked a side oven that was next to the regular oven.
After this experience, I encouraged my twelve-year-old granddaughter, Courtney, to thoroughly examine the kitchen, rather than just going to the cabinets where she knew she could get a cup or a snack. I wanted her to have a complete picture of the kitchen. I also had her boil her own eggs the very next day, using the basic safety techniques that I had learned. Although she had fixed snacks for herself before, she was proud that she had actually cooked something completely on her own.
Suggestions from Samta Singh, mother of twelve-year-old Nandine Singh:
1. Being blindfolded can make the room space seem much bigger, so spend time to explore the kitchen and determine the location of appliances, sink (including the hot and cold faucets), refrigerator, all cabinets, and anything else you may need to use—including the garbage can—before you begin cooking!
2. Familiarize yourself with the stove and the oven. Learn the location of the operating knobs and how to operate them.
3. Always use a larger pot to heat water to avoid spills that could result in injury. Also, a container with a larger opening helps with centering when liquid is poured into it. (Note: I don’t know if experienced blind cooks need this, but I think this is a good idea for novice parents and blind kids just learning to cook.)
4. When pouring liquids determine the center by circling with a spoon along the circumference of the pot, then use the spoon horizontally and vertically to gauge the center of the pot. Then pour along the center.
5. You will definitely be exploring and readjusting the contents of the refrigerator before placing new items in it. So, having a counter close to the refrigerator is helpful. This allows you to place the item at close proximity while you work on manipulating the items in the refrigerator. Know the shape and size of your pots, pans, and dishes and how they can fit in your kitchen cabinets and refrigerator.
6. Use a sharp knife to cut vegetables. Blunt knives can slip over the food item and cause injuries. Also, always place the knife on a cutting board or a ceramic plate before cutting with it.
7. Remember to close the cabinet and refrigerator doors when done.
8. Learn to relax and enjoy a well-prepared meal, you deserve it!
Tips from Karen Herstein, mother of high school sophomore, Amy Herstein:
1. When you are first learning how to cook under blindfold, don’t be afraid of making a mess. At first, when you are learning to pour, it’s hard to know if the spout is over the cup and to know when the cup is full. My fingers were not sensitive enough to feel the liquid right away. If you relax and don’t worry about spills, you will get better with practice. So, be patient with yourself, and then be patient with your kids when they first start to cook.
2. Hands-on orientation to the kitchen is very important. Know where everything is—the refrigerator, oven, measuring instruments, ingredients, trashcan, hot mitts, etc.
3. It’s hard to pour out and measure small amounts of liquids (such as vanilla extract) out of small mouth containers. It’s easier to measure if you transfer the item to a large mouth container, such as a baby food jar. Then you can “dip” and measure instead of trying to pour and measure.
4. Pre-measure liquids before heating so you don’t have to measure hot liquids.
5. Before you put a pan in the oven, check and see where the shelves are and if there is space on the shelf. It’s best to do this BEFORE you heat the oven. Also, make sure there is space on the counter before getting hot items out of the oven.
My experiences as a blind mentor in the Transition-To-Independence Club—Mildred Rivera:
Last year I assisted in the use-of-readers session of the transition club. I worked with a partner, Gerald Jeandron, who is a good Braille reader. (Though I learned Braille in 1989, since I primarily use large print I have no speed in Braille and use it primarily for labeling and for short notes.)
I had a Braille and large print version of a local restaurant menu, and Gerald had a Braille cookbook. We were the designated readers for Quantrise, a partially sighted high school junior who did not have experience using readers. She and all the other blind students were given an assignment to direct a reader and find the answers to about eight or ten questions about the menu, and also to find specific types of recipes in the cookbook and to answer specific questions about them. Like Gerald and me, the other “readers” were blind Braille reading members of the local NFB chapter who volunteered to be mentors for the transition club.
However, before our paired reading activity, several of the blind adult volunteers put on an amusing skit about the proper and improper ways to use sighted people as readers. Through the skit students were given some general guidance on using a reader.
They learned that it is important to: 1. be prepared with the proper materials before the reader arrives for work; 2. have a “road map” or plan of action about how to proceed; 3. be organized; 4. give clear directions; 5. require promptness of the reader; and 6. focus on the task. After a short discussion we broke up into small groups for our reading activity.
Quantrise, the student Gerald and I were paired with, was very hesitant at first to take charge, but with some encouragement she began to direct us through the menu. She learned that menus have different sections, such as appetizers and beverages. It took a few times through the menu to get all the information. For example, one of the questions was, “What is the cheapest item on the menu?” As she continued to direct us in reading, Quantrise also learned that this cookbook had a table of contents. Once she learned this, she was able to more quickly locate the appropriate recipes for Gerald to read.
After the paired reading activity the students got back together in a large group, shared their answers, and talked about what they had learned. The kids apparently put their new knowledge to use right away. I understand that parents reported immediate improvement in the way their kids directed them as readers. The kids employed new strategies they had learned, were better organized, and were more assertive in taking charge of the reading process.
Thoughts about the Transition-to-Independence Club from a student—
Our transition club is popular with blind teens that want to learn about gaining their own independence. In this club I have learned about using taxicabs and about other ways blind people get around. A second topic that I learned about is social behavior. I learned how sighted people interpret different body postures and facial expressions with different emotions. We also discuss hiring and using readers, obtaining and utilizing technology, and about preparing for college. From time to time the club provides us with paid jobs so that we can experience work on a small scale. This experience has helped improve my understanding of jobs.
In the club, blind adults did a skit for us about using readers, and then they sat down with us one-on-one and pretended to be our readers (they had Braille materials) while we told them what to read. Also, we took taxi cab rides with blind adults so we could watch them and learn the best ways to get a cab, give directions, pay the fare, etc. Here are some of the tips I learned about using a reader or driver:
* Know what you want
* Interview the reader or driver first
* Have a backup plan in case your original plan backfires
* Don’t let people boss you around
* Be persistent—until you get what you want
* Do your job efficiently
For more information about the NFB of Maryland Transition-to-Independence Club, contact Sharon Maneki at [email protected] or call (410) 715-9596.
Her Culinary Vision
by Kitty Crider
Reprinted from the Austin American
Statesman, April 24, 2002.
Editor’s Note: One of the first things I learned about blindness some 25 years ago, was that it is no barrier to competency in the kitchen. Over the years I’ve had the pleasure of sampling the culinary products of some outstanding blind cooks; fresh home-baked bread from the kitchen of the Braille Monitor editor, Barbara Pierce; creamy pumpkin soup, created and prepared by caterer and chef, Marie Cobb; heavenly pound cake prepared from scratch by nutritionist Lynn Bailiff; and juicy, tender steaks grilled by NFB President, Dr. Marc Maurer. The author of this article does not have my advantage, so sometimes she gets a little carried away in her amazement that a blind woman can safely navigate the hazards of a commercial kitchen. Despite that, I think the following article will give parents who have been reluctant to let their blind kids into the kitchen a little “food for thought.” This article will also whet the appetite for the next course (oops, I mean article)—“Cooking Madness”—a reprint of a classic written by Carol Castellano. But first, here is Ms. Crider’s description of how one blind woman manages in the kitchen as she learns the finer points of the culinary arts in cooking school:
It’s fascinating to watch Juliana Cumbo’s hands as she cooks. She flattens a ball of pie dough with her fingers on the shiny stainless steel kitchen countertop at a local chefs’ school and reaches for a rolling pin. Using sure strokes, she rolls one direction, then another, lifting the dough and turning it about ninety degrees—a pastry chef’s trick to assure symmetry. With her nimble fingers—nails clipped short and unpolished—she touches the dough more than most, but delicately. She fits it into the waiting pie pan and starts on the apples for the filling.
With a huge chef’s knife, she cuts the apples into halves, then quarters and cores them. Placing the apples face down on the cutting board, she slices with sure, steady cuts, moving her fingers back carefully each time to avoid injury. She’s not the fastest or flashiest of the aspiring chefs in the kitchen, but she is smart and one of the most dedicated.
“Where’s the cinnamon?” she asks a colleague as she tosses the apples into a stainless steel bowl. “On the supply rack at the back of the room, second shelf, second jar from the left,” answers the class instructor. Slowly but deliberately, the student in a white coat walks to the shelf and retrieves the spices. With a measuring spoon, she scoops the correct amount, levels it off and adds it to the filling. She consults her stained recipe and continues with the pie.
“Juliana, freeze!” shouts a fellow student, coming through with a hot dish.
She remains motionless until the danger has passed. Commercial kitchens are fraught with peril: slippery spills on the floor, hot ovens, steam, knives, bubbling oil, fellow cooks darting abruptly in fast-paced momentum. It’s a threatening environment for a veteran, let alone a novice. Especially someone who is blind.
Unlike most aspiring chefs, Cumbo, twenty-five, cannot see a pot boiling over, a soaring flame or a pointed knife. Yet she cooks confidently. Outside the kitchen door, her harnessed guide dog Xylo, a golden retriever, waits patiently while his curly brown-haired owner cooks.
By age ten, Cumbo had lost sight in her hazel eyes to a genetic disease called retinitis pigmentosa. She can see only natural light. Objects aren’t just blurry. They are gone. While the loss may slow down this determined woman, it does not keep her from pursuing her interests, even if it means taking public transportation to a six a.m. professional cooking class across town. With a depth of patience, she handles it all calmly. When people ask her what it’s like being blind, she replies, “Sometimes it’s inconvenient.” She adds, “Intellectually I know it doesn’t do any good to get frustrated. I just figure it out.”
When she’s shopping for groceries, she goes to the customer service desk at the store and requests a clerk to walk the aisles with her to help in selecting the items on her list. For deep-frying or draining pasta from large pots of boiling water, she requests assistance. For the apple pie recipe, she asks someone to read it on tape so she can transcribe it into Braille and take the punched heavy paper to class.
“How do you get people to read for you?” a fellow blind student asked her on a trip to California during her spring break. “I feed them,” says Cumbo. “When they come over
to read, I cook for them. I make it a win-win situation for both people.
“I never expect people to do anything for me, but it’s nice when they do,” she says with a smile. She prefers to do as much on her own as possible. In chefs’ school, she retrieves supplies just like everyone else. She uses sharp knives. She bakes in hot ovens, testing the doneness of cakes with a toothpick and feel, not by observing its color.
She says she is adamant about mise en place, the professional culinary practice of having all ingredients ready, prepped and measured before beginning cooking. It assures success. Because she is not as fast as some of the other students, she may be assigned only two recipes to cook instead of three in a given lab time. But she’s always prepared, observes instructor R.J. Smith.
“I’m a perfectionist,” admits Cumbo. “I work hard to be on time and prepared. I already have a handicap.” Cumbo realizes that without sight, there are some cooking skills she cannot master, such as French-carved vegetables and elaborate wedding cake decoration. That’s all right, she says. Her goal is not to work daily in a professional kitchen but to teach people how to cook and eat healthfully. She wants to obtain a master’s degree in nutrition from the University of Texas, to which she has been accepted.
“I’m really excited about it. But I know it will be really challenging. I know those biology and chemistry labs will be just like working in a kitchen. I know I will need assistance to pour acids and handle bottles of chemicals. But I can do other things.”
She believes if she plans to teach others how to cook well, she needs to be good at it, too. That’s why she has been studying professional cooking—classes such as American cuisine, baking, food yields, and meat preparation—at Austin Community College. She will earn her basic culinary arts degree in May.
Chef classes aren’t the same as cooking at home. Commercial kitchens are noisy, she notes, and that makes it more difficult. She relies on hearing: the sizzle of oil in a pan, the sound of a liquid as it pours, the hollow tap of a loaf of baked bread. She trusts her sense of smell. Her nose discerns the roasting progress of meat or veggies, and she can brown beef bones for stock. With a sniff, she can tell whether oil in a pan is getting too hot, identify spices or ascertain that sliced onions are caramelizing nicely.
She also judges doneness by touch. “I was making swordfish steak. I had to check that they were done by picking them up with a fork and touching with my hand to feel the texture.” But she shrugs off the notion that blind people have an acute sense of smell or hearing or touch. “Everyone has the same hardware. It’s all in how it’s used. Blind people use their senses more. They relate to the world differently because they don’t have sight.”
Becoming blind is an adjustment for the sighted as well as the sightless. When Cumbo lost her sight in the ‘80s, her mother deemed the kitchen off-limits to her. But Cumbo didn’t agree. Everyone in her family is a good cook, and she saw no reason why she couldn’t be one as well.
“My mom used to freak out when she would see me with knives and hot water and such.” Now Mom lets Cumbo cook a birthday dinner for her. Cumbo credits her younger sister Alicia, now living in North Carolina, with bridging the gap. “Alicia read recipes to me. She explained it to me without doing it for me.”
That’s the way Cumbo wants it, even if she occasionally makes mistakes. Like most cooks, she’s had her share of mishaps, and she’s quick to regale a listener about the time she tried to make refried beans but did not realize they needed to be cooked first. On another occasion she ignorantly put tinfoil in the microwave oven. But only once. She’s caught her hair in a mixer. And she’s set a couple of kitchen towels on fire because she did not realize that someone had left them on the burners. None of this discourages the petite woman who is so friendly and matter-of-fact about her handicap that she puts others at ease. She forges ahead fearlessly in the kitchen or in life. (After graduating from high school in California, she chose to attend college thousands of miles away in Virginia.)
Independent? “Oh, yeah!” says her husband, Jeremy, a graduate music student at UT. They met at Virginia Commonwealth University, where Juliana received a bachelor of music in classical guitar, magna cum laude. “I thought Jeremy had a great (speaking) voice,” Cumbo says. And he thought “she was cute.” They have been married nearly two years.
Sometimes they cook together—paella and carrot cake from scratch—and sometimes for each other. She’s made him an Italian pasta dish and chocolate decadent cake. He’s prepared salmon and artichokes for her. In their small galley-style apartment kitchen, Jeremy seems to sense when she needs cooking assistance and when to let her solo. As she sliced and roasted eggplant, zucchini and red peppers for a Moroccan couscous dish, she said there is no special order to the food in her fridge. She identifies contents as good or bad by smell and feel (slimy or not). “If I have to dig in and feel the container or smell it, I don’t forget about leftovers.”
Casually dressed in jeans, a purple cotton knit top, and a beaded belt; she pulls a bottle of olive oil out of the pantry to brush on the vegetables, explaining that it is a new bottle. That’s significant because it will pour out quickly and she will need to be extra careful. Not wasting ingredients—that’s one of the hardest parts of cooking blind, she confesses. Cumbo places the pan of prepped veggies in the oven and turns on the oven. To guide her, the arrow on the dial is marked with a large Braille dot. If she turns it 180 degrees, she knows that is 350 degrees Fahrenheit on her stove. She adjusts the knob a little more to reach 425 degrees, approximately. (Her microwave oven has Braille tape added to the electronic keypad.)
A small rug in the middle of the floor catches any spills, and it marks where the center of the kitchen is for her. Any food dropped on the floor is fair game for Xylo. Jeremy pops into the kitchen and asks if she wants him to read the directions to her from the package of couscous. That’s another drawback of sightless cooking—the inability to read directions, labels, or printed cookbooks. She accepts his offer and then measures out the water to cook the couscous by filling the cup to what she thinks is right and checking it with Jeremy.
“In baking class, I got really good at cutting an ounce of butter,” she says with a smile. When fellow classmates asked how, she explained that it was about as wide as her index finger. She acknowledges that she could get talking digital scales for her kitchen, but has not yet. “It’s a matter of money. Students think like that.”
As she’s talking, she is also listening to the pot of water on the stove, waiting for it to boil. She sorts through her spoon drawer to locate the strainer. She cuts and squeezes a fresh lemon through the strainer to catch the seeds. The juice will flavor the couscous. She’s starting to hear the roasting veggies sizzle—she didn’t set a timer—it was all hearing, smelling and instinct. “Let me check those veggies. They are sounding crispy.” She pulls the hot pan out of the oven and stabs the veggies with a fork. They pierce easily. Pronouncing them ready, she chops and adds them to the bowl with the lemon juice, seasoning and the couscous. With a clean spoon, she tastes: “Yummy. That’s good. A little more lemon pepper and it will be done.”
Their kitchen is stocked simply but with a few extras: a food processor, a blender, a crock-pot, a waffle maker, a juicer (a cherished Christmas present from Jeremy), an espresso machine, a toaster oven, a wooden chopping block, a carousel with spices. Not many cookbooks.
She says there are lots of cookbooks in Braille, but not ones she considers cooks’ cookbooks. So she gets most of her recipes via her computer with its voice synthesizer. She prints them out in Braille or has someone read them to her. Her computer directory of recipes reads like an international cookbook: curry, carne guisada, blackened fish, paella.
“I totally watch the Food Network all the time,” she says in her soft-spoken voice. She listens carefully to the television cooking show to visualize what they are doing. Then she figures out ways to accomplish the recipe sightless, such as using her oven rack as a stencil for raviolis or petit fours.
She’s good at that—setting a goal and then devising a way to achieve it. And it’s not always about food. After her first year of college, she flew from the East Coast to Los Angeles, where she spent two months in a Spanish-speaking convent so she could learn to read Braille music. Several years later she became a disc jockey for KMFA in Austin. Now, she teaches music part-time at the Texas School for the Blind while she tackles the world of food.
Carefully. Cheerfully. Positively.
Watch her hands.
Watch her determination.
Watch her succeed again.
Blind, yes. But she definitely has a vision for her life.
Why You Should Encourage Your Child to Play With the Pots and Pans!
by Jacki Harth
Reprinted from Future Reflections volume 7, number 3.
Bringing the world to my two-year-old son (who happens to be blind) seems like an overwhelming job and I used to feel very guilty for not sitting down and working with him the way his teachers did at school. Then Tyler showed me how he could practice these skills at home with “house stuff.” Here is an example. I had read in many general articles about children (and remembered that this was true with my other children) how children love pots and pans. Little did I know what a gold mine of education we had in one little cupboard.
Orientation and Mobility/Finding the Cupboard: Since Tyler enjoyed making “music” with the pots and pans, it was a built-in reinforcer for him to find the cupboard, cruise past the stove, etc. He cruised back and forth for many weeks on that side of the kitchen finding landmarks and feeling very proud of himself.
Sound Localization: It didn’t take him long before he was throwing a pan across the floor and crawling or scooting after it.
Object Permanence: Now this made sense! Open the door and they are always there.
Fine Motor Skills: Learning how to open the door was a task that took time and concentration. We also talked about the front of the door, the back and inside of the cupboard, etc. It was a great opportunity to talk about these concepts. The fine motor skills were tested whenever he tried to pick up an upside-down cake pan (try it once).
Gross Motor Skills: Cruising to cupboard then walking across the kitchen freestyle (very scary for mom). He also walks around with a pan or two and practices sitting on the bigger ones (or in them).
Discrimination: There are always big pans, little pans, heavy pans, LOUD noises, soft noises, and so forth.
Self-Help Skills: Throw in some spoons and cups for an added surprise. Here again, more concept building, such as big and little, etc.
Language and Communication: With practice you will start describing your child’s actions while he is on the go. “Open the door.” “That’s a heavy pan!” “Go get the pan.” “Sit down,” and “Stand up.”
If you don’t want your good pans thrown across the floor, go to an auction or second-hand store and buy a boxful of metal ware. And if you think the noise will drive you nuts, you’ll get used to it. The satisfaction and education your child is getting is well worth it. And just think of all the education he is receiving while you’re washing dishes.
Other suggestions (Our O&M specialist gave me these suggestions.)
When your child is learning where the stairs are, put the safety gate on the second or third step-up or -down. This will give him the independence to investigate without falling all the way down.
Have a special activity that your child likes in each room of the house to encourage room-to-room travel. For example, an organ or keyboard in one room—you can turn on the demonstration tune to give him a continuous sound cue to find. An old coffee pot full of cookie cutters and wooden spoons encourages movement to a hard-to-reach spot like around the table. A drawer full of brushes and combs in the bathroom is a favorite spot, and a sit-and-spin toy provides an excellent sound cue for fun.
Tyler finds these favorite spots easily now by himself, but it took many months of showing him how to get there, and lots of practice to get to this point. As he gets older he will get bored with these and challenge us to show him new things.
Going to new and noisy places is always a challenge for all of us. All that I can say is talk, talk, talk about the sounds and LET HIM LISTEN. I always want the public to see what a normal active child he is, but I’ve learned that a good long while in mom’s arms listening will put the sounds and feelings in perspective for him, and then—when he is ready—he will get down and investigate.
When introducing a new experience (like swimming in a small pool) you may have to work up to the complete “normal” experience. We did this by letting Tyler sit in a separate pool, first on a chair with just his feet in the water, and bit by bit, working up to swimming by himself. It was only about a week before he was swimming in the pool with the others and having a great time.
[PHOTO/CAPTION: June, 1989—Carol Castellano in the kitchen with her children, Serena and John.]
by Carol J. Castellano
Reprinted from Future Reflections, volume 8, number 3.
Why anyone would want to spend two or three afternoons a week cooking with a couple of little kids, I don’t know (Serena is four-and-a-half and blind; John is two and sighted). But then again, if I don’t cook with them, supper simply doesn’t get on the table because at 4:30 or 5:00, my two formerly pleasant, reasonable children turn into Cling-Ons. That is, they wrap their now whining, tearful bodies around my legs. It is difficult to move briskly about the kitchen weighted down by sixty pounds of baby, so I would ordinarily give up and go play with them on the living room floor until my husband came home, whereupon he would either relieve me, go call for take-out, or, in desperation, cook supper himself.
Then I discovered cooking with the dumplings. They really love it, and their dad is happier, too. So, everything takes three times as long. So, we make quite a mess. We do eventually get a decent meal on the table, and my kids are gaining a good knowledge of cooking tools and terms.
They scurry about gathering ingredients and searching for pots in the cabinets. “I need the very large pot way in the back,” I’ll tell them. “See if you can find its cover.” At the refrigerator we practice with terminology such as “bottom drawer on the right” and “the compartment on the door.” Then they drag chairs over to the sink for washing hands. I run the water so that Serena can hear where to bring her chair (our kitchen is a large square with cabinets on two sides, and Serena is still learning her way around in it.) If there are any vegetables to be scrubbed, we do it together at the sink. Then they climb up on their “cooking chairs” at the table.
The children usually begin with peeling the skin from onions or garlic. If necessary, I “start them” by making a slit with a knife. Serena can easily tell when the garlic is completely peeled. Then we put all our vegetables on a large cutting board. I tell them to choose one vegetable and get ready for cutting. I pick up the knife and put one child’s hand on it under mine. We talk a lot about the fact that the blade can be dangerous and that they are never to handle sharp knives without an adult.
When we cut large items like carrots I let the children hold them themselves with my hand over theirs. Serena likes to feel the tips and stems we’re going to cut off. So that she will really understand what the knife is doing and where it goes, we pause mid-cut and she feels the slit the knife is making. After the cut, I often push the carrot or potato together and let her slide it apart so she can relate the whole to the parts. When we slice small items such as garlic, I tell them, “Mommy has to hold the garlic because it’s too small and I don’t want the knife blade to get too near your fingers.”
Sweet potatoes lend themselves well to math lessons. “ Choose a potato, Serena. Now, let’s cut this potato in half. Here, see what the halves look like. Are they big or small? Yes, they’re still too big to go in the pot. Let’s cut them in half again. Make the pieces stand up on their flat end.” Slice. “Now look. They’re much smaller, but we still need to cut them some more. Make all the pieces lie down.” All this handling of the pieces builds a concrete knowledge of many concepts, including the fact that living things contain water.
If the vegetables need to go right into boiling soup or water, I usually insert the extra step of having the children pick up the pieces and put them into a bowl first. Serena checks to see if any pieces are still too big and if the cutting board is empty. Sometimes they load the vegetables into the upper section of the food processor (nowhere near the blade, and again, with much discussion of safety) and then together they press the start button (it takes two of them to do it!). After I remove the blade, we examine the results of the processing.
I do all the work at the stove or oven, explaining to the children why they cannot. We talk about the sounds and smells of cooking. We listen for the water to boil; we note the sizzle of sautéing food. I explain the various plops, splashes, and bubblings in the hot pots as I pour and stir.
Dry ingredients are a lot of fun. The children open all the containers, learning about lids, spouts, corks, twist-offs, screw-ons, push-ins, pop-tops, and pull-tabs, while developing their dexterity and strength. I give each of them a measuring cup and spoons and a stainless steel bowl (good for noise), then we scoop and pour many more times than we actually need to, listening to the sounds and digging in to feel the textures and yes, tasting, too. John prefers raw macaroni; Serena favors flavored breadcrumbs. There’s no accountin’ for taste.
When the children open oil and spice containers, we sniff and enjoy their pungency. Then we pour and sprinkle, letting the oil drizzle and the flakes filter over Serena’s fingers so that she can see what they feel like and how they come out. Of course, this appeals an awful lot to John, too. They take turns sprinkling the spices on. Serena’s turn. They never forget whose turn it is, and our food gets awfully spicy.
We open cans at our house with a primitive tool, the manual can opener. We work hand over hand, and I explain as best I can how the wheel cuts into the can; it’s hard to feel. But the click as the cover un-attaches is very noticeable, and Serena certainly knows when it occurs. Again we discuss handling the sharp edge of the top with care. Then little fingers dip into the liquid within for licking.
Among the food my children like to cook the most are eggs and fish. Eggs make the supreme mess, I’m sure that’s why. We crack them hand over hand and then, I have to admit, I let them stick their hands into the slime below. They love it. We wash our hands again. Fish is fun because they get to slap it into the pan. They really like doing that. They even enjoy having smelly hands. I make them wash up again.
For some unknown reason both of my children believe that they should make the messes and Mom should clean them up. They are unanimous about this and unwavering. I have not yet conceived of an effective means of combating their united stance. I do a lot of sweeping up of raw rice and elbow macaroni and cous cous.
But now to the end result. Dad comes home. The sweet smell of supper wafts through the air. The kids are hungry for food that they cooked. Our family will eat tonight.
[PHOTO/CAPTION: “What’s this?” Jessica Woods examines the hanging scale in the produce department during a supermarket outing.]
by Carol J. Castellano
Reprinted from Future Reflections, volume 7, number 2.
Editor’s Note: This classic article and “Cooking Madness” which is also in this issue, are reprints from earlier issues of Future Reflections. Serena, who was a toddler and preschooler when her mom wrote these articles, graduates from high school this spring. In addition to her early experiences with mom in the kitchen, Serena has had several opportunities to learn and practice cooking, shopping, and other daily living skills at the NFB Louisiana Center for the Blind summer programs for youth. There are no guarantees in life about anything, but when Serena goes off to college this fall (with a $9,000 merit scholarship in hand, by the way), her parents can be confident that they did their part to prepare her to meet the non-academic challenges and responsibilities of independent college living. And here’s how and when some of that preparation began:
My daughter Serena loves our weekly trips to the supermarket. Her fun begins outside the store, where she chooses just the right basket to sit in. Then we make the automatic doors open. This must seem like some sort of magic to a child, opening onto an interesting world of smells and sounds and tastes and people and, from a parent’s point of view, learning opportunities. Serena was three-years-old when we began our supermarket routine. You can adjust your ‘lessons’ to the level of age of your child.
“Serena, Daddy needs some pears.” I announce as we enter the produce department and we begin to choose a few. “Is this a good one?” I ask her. “Does it have a good smell? See how it feels. Here’s the stem! Oh, look, there a leaf on that stem! Let’s get a plastic bag to put our pear in.”
Serena helps me peel a bag off the roll and helps to tear it along its perforated edge. As we put in the pears, we count them. “One, two, three, four. That’s one for Daddy, one for Mommy, one for Serena, and one for John. Do you think that’s enough pears? Let’s feel them through the bag. Can you feel four pears in there?” On to the apples. “Hmmm, these apples feel different from the pears, and they smell different, too. But look they have stems. Apples and pears both have stems.”
We go on through the produce department discussing each of the fruits and vegetables that our family eats. I find that giving Serena a personal fact or two about each item makes it more meaningful to her. “Mommy likes Delicious. Daddy likes Macintosh.” Or we might sing a song (Apples and Bananas, or Day-O) or talk about the guacamole we’re going to make out of the avocado. I also use storybook details to expand Serena’s world. “Look, here is parsley, just like Peter Rabbit was looking for in Mr. MacGregor’s garden.” In these circumstances, Serena is very willing to handle and explore things she ordinarily would be reluctant to touch, such as lettuce or broccoli.
In order to give her an idea of how much food a supermarket sells, I tell her to lean over and reach out her hand. “This is a long aisle! Serena, they have cookies and cookies and cookies and cookies and cookies and cookies in this aisle!” I tell her as her hand passes over package after package. We do this in several aisles, using items that she is particularly fond of or interested in. I include as much incidental information as I think Serena can absorb while still having fun. If the new information can build on something already known, it will be easier for the child to learn. For example, “The bread in this package is made from wheat. Do you remember when we saw the wheat at the farm?” You could include whatever information would be relevant to your child. Think about what knowledge he or she already has that could be added to.
Serena’s favorite aisle, after cookies, is the diary aisle. She loves to handle and count the packages of cheese, the containers of milk and orange juice, and the eggs in the carton. All kinds of learning can go on here. “This carton of milk is much smaller that the carton of orange juice.” (Use the terms quart and half-gallon if your child is ready for them.) “Wow, the orange juice is so heavy I can hardly pick it up.” We drop it cautiously into the cart behind her and listen for the thud. “The juice inside the container comes from oranges just like the ones we chose before. You have to cut the orange open and squeeze it to get the juice out. Serena, help Mommy check the eggs. We don’t want to bring home any broken ones. Let’s count them. Twelve, that’s a dozen. We’ll have these eggs for breakfast tomorrow.”
I try to let Serena take each item from the shelf. If she cannot reach, I put it in her lap so she can look at it. Then I say, “Let’s put it in the basket BEHIND you.” Heavy emphasis on the “behind” got Serena to learn that particular preposition and its meaning very easily. The supermarket cart seat is also good for “beside you” and “next to you” and Mommy is standing “in front of you.” You can practice memory skills by asking “Do you remember were I put the bananas? Yes, they’re on the seat next to you.”
Throughout the store we talk about shapes and sounds and textures. “The peanut butter jar is round.” “The macaroni in this box makes a lot of noise when you shake it. When the macaroni is cooked, does it still make noise? No, soft things don’t make much noise.” “These potatoes are dusty with dirt. They grow in the ground, right in the dirt. We’ll have to scrub them really well before we cook them.”
We make a stop at the courtesy desk. “Mommy has to get the check approved. Here, Serena, could you hold the checkbook for me? Now hand it to me, please, and hold my pen.” I think using proper terms such as “courtesy desk” and “approved” gives the child the best exposure to the activity and expands the vocabulary as well.
Finally to the checkout, “Serena do you hear the cash registers ringing? We’re at the checkout counter now. Mommy is putting the groceries on the conveyer belt. Do you want to feel it move? Look, here are the pretzels we took off the shelf before. I took them out of the basket and put them up here. Now the cashier will tell me how much money our groceries cost. As soon as I pay we can take our groceries home.”
Usually by this time three packages of snacks are open, we are both tired, and we can’t wait to get home. But I know the fatigue is worth it, because after every trip to the market, Serena has learned at least a few things and has further solidified the knowledge she had before. She is more understanding of, and drawn into, the comings and goings of the world around her.
2002-2003 Braille Readers are Leaders Contest Winners
School for the Blind
Outstanding Participation Award
Florida School for the
Deaf and the Blind
Louisiana School for the
Excellence in Promoting Braille Literacy
Librarian, Kentucky School for the Blind
First: Brad Head, Missouri, 9th grade,
Second: Bradley Howle, South Carolina,
6th grade, 1,119 pages
Third: Juna Gjata, Massachusetts,
2nd grade, 1,088 pages
Fourth: Jeffry Peña, Florida, 3rd grade,
Fifth: Jerry Espino, Maryland, 4th grade,
Kindergarten - First Grade
First: Alexandra Berthiaume,
Massachusetts, 1st grade, 1,854 pages
Second: Meredith M. Pell, California,
1st grade, 1,698 pages
Third: Vejas Vasiliauskas, California,
Kindergarten, 1,458 pages
Fourth: Kelcey Schlichting, Missouri,
1st grade, 1,094 pages
Fifth: Lindsay Hale, Massachusetts,
1st grade, 919 pages
Second - Fourth Grades
First: Tyler Kavanaugh, Kansas,
4th grade, 14,685 pages
Second: Lindsay Upschulte, Illinois,
4th grade, 13,120 pages
Third: Morgan Budreau, Minnesota,
2nd grade, 5,858 pages
Fourth: Paige Tuttle, Kansas, 2nd grade,
Fifth: Emily Pennington, Ohio,
3rd grade, 4,520 pages
Fifth - Eighth Grades
First: Aaron Mushlock, Michigan,
7th grade, 16,068 pages
Second: Desiree Oudinot, Pennsylvania,
7th grade, 11,854 pages
Third: Jamealya Lopes, Massachusetts,
8th grade, 7,288 pages
Fourth: Shane Streitmatter, Illinois,
6th grade, 6,630 pages
Fifth: Katie Kress, Minnesota,
5th grade, 6,283 pages
Ninth - Twelfth Grades
First: Jessica Snyder, Ohio,
11th grade, 17,414 pages
Second: Michael Kontur, New Mexico,
11th grade, 11,642 pages
Third: Barbara Stahl, Ohio, 11th grade,
Fourth: Meghan Whalen, Wisconsin,
9th grade, 6,463 pages
Fifth: Jessica Watson, Maryland,
9th grade, 6,213 pages
Chelsea Walker, Missouri. Age 17
Paul Scruggs, Maryland. Age 14
Caitlin Hair, Oklahoma. Age 17
Jonathon Cord, Kentucky. Age 10
Jessica Thompson, South Carolina. Age 9
Leah Grinder, Maryland. Age 14
David Hatten, Louisiana. Age 16
Nick Rice, Arizona. Age 15
Matthew Wickett, Pennsylvania. Age 8
Lauren Webster, Louisiana. Age 14
AAF FREE BRAILLE BOOKS PROGRAM
Nancy Drew® * Chapter books * The Hardy Boys®
City _______________________ State __________________ZIP ____________
Telephone __________________ E-mail _________________________________
Student’s Birth Date ___________ Name of Parent _________________________
Check one: [ ] student [ ] teacher [ ] library or institution [ ] blind adult [ ] other
Please send me the following book(s):
[ ] Chapter books (RL 2.0/2.6). I understand I will receive either a Junie B. Jones or an A to Z MysTerieS® book; whichever has been most recently issued in print. I understand I will receive 6 books in a 12-month period.
[ ] Nancy Drew® (RL 5.4). I understand that I will get a book every other month.
[ ] The Hardy Boys® (RL 4.7). I understand that I will get a book every other month.
Note: Nancy Drew® and The Hardy Boys® are shipped in alternating months.
Fill out an Application and mail or e-mail it to:
American Action Fund for Blind Children and Adults
Free Braille Books Program
1800 Johnson Street
Baltimore, Maryland 21230
(410) 659-9314 ext. 361 * [email protected]
Please make copies as needed!
[PHOTO/CAPTION: Davis Drive students play a game from the Braille Is Beautiful Curriculum program. Later, after they have learned the Braille dot positions, they will progress to writing Braille with a slate and stylus. Before the program is finished, they will hand-Braille decks of UNO cards as a service project.]
A Touch of Understanding
by T. Keung Hui
Reprinted from The News & Observer, May 23, 2003.
CARY—Preston Davis can shuffle and split a deck of UNO cards like a card shark. It wouldn’t be hard to overlook that Preston, eight, is visually impaired and relies on Braille dots on the cards to “see” them. He was among a group visiting Davis Drive Middle School on Thursday as part of an effort to help sixth-graders learn more about the world of the visually impaired.
“Preston is cool,” said Kimmy Lockhart, eleven, who acted as one of Preston’s guides. “It’s fun seeing things that are different from us.”
The visit by Preston and sixteen other students from the Governor Morehead School for the Blind in Raleigh culminated two months of study by 130 students at Davis Drive. Through the Braille is Beautiful curriculum of the National Federation of the Blind, the sixth-graders have learned to read and write simple Braille letters and numbers. Braille uses patterns of raised dots to represent characters; the dots are felt with the fingers.
“This is an opportunity for the students to work with kids they normally wouldn’t meet,” said Marnie Utz, the Davis Drive sixth-grade teacher who involved the school in the program. “This is a service opportunity.”
One of the Braille curriculum’s main themes has been that blind people can do anything sighted people can do. “It’s cool seeing that people with eye disabilities are no different than us,” said Alex Morrison, 12, as she played UNO with Brandi Hunter, eleven, a visually impaired student.
The Davis Drive students visited Morehead in April and learned what it is like to walk with a cane, listen to a computerized voice and play a game of goal ball, where participants detect the ball’s presence through the ringing of a bell inside. During the reciprocal visit by Morehead students, the Davis Drive students showed how they could spell their names in Braille and play UNO on specially modified cards. For the Morehead students, the visit was just as rewarding.
“It’s nice meeting people who want to learn Braille,” Brandi said. “It’s fun because in middle school you don’t get to go out on field trips often.”
Preston said he enjoyed the change of pace from life at Morehead, a boarding school. “It’s good being around sighted people instead of blind people all the time,” Preston said.
Hazel Staley, past president of the North Carolina chapter of the National Federation of the Blind, said the activities build bonds between sighted and visually impaired people like herself. “Blind people are out in society more and more,” Staley said. “If they can communicate with us in a way we can read, it’s nice.”
Editor’s Note: Do you have a success story to tell about your use of the Braille Is Beautiful Curriculum Program? We will be publishing a story about the program in every issue this coming year, and we would like to know about your experiences. If you have a story to tell, or if you want more information about how your school or youth group can get the program, please call or send an e-mail to Barbara Cheadle at (410) 659-9314 ext. 360,
<[email protected]>. You may also get information about the program on the NFB Web site at <www.nfb.org>.
Braille Is Beautiful—A Disability Awareness Program for Sighted Children
Braille Is Beautiful Curriculum Program: $250
This program has all the materials needed to instruct a typical classroom of children. It includes the 100-page Teacher’s Guide, the Video Set, multiple copies of student instruction books and workbooks, a ream of Braille paper, slates and styluses, multiple copies of paper-back books with stories from and about blind people, a large set of Braille alphabet cards, a teacher’s guide on teaching writing with a slate and stylus, and more.
Braille Is Beautiful Video Set: $35
Two videos, Jake and the Secret Code (for children) and That the Blind May Read (for adult audiences); a 30-page discussion guide with instructions for slate-writing and a resource list of children’s books and Web sites; a slate and stylus; and a Braille alphabet card.
Braille Is Beautiful Teacher’s Guide Economy Kit: $25
The Teacher’s Guide, 100 Braille alphabet cards, three paperback books with stories by and about ordinary blind people, and one slate and stylus for writing Braille.
Braille Is Beautiful Combo Set: $50
The Video Set and the Teacher’s Guide Economy Kit.
To order or to request more information, please contact:
National Federation of the Blind
1800 Johnson Street
Baltimore, Maryland 21230
(410) 659-9314 [ [email protected] * www.nfb.org
[PHOTO/CAPTION: Robert S. Jaquiss]
A Review of SAL
Speech Activated Learning
by Robert S. Jaquiss
Editor’s Note: Robert Jaquiss is one of the technology experts working in the International Braille and Technology Center for the Blind.
In the following article he gives a description of the SAL, a new type of Braille teaching aid that employs speech, a computerized touch screen, and regular paper Braille. This is what Mr. Jaquiss says about the SAL:
Years ago when I was learning Braille, nearly all the materials I used were hand-made by my mother and by my teacher, Mrs. Summers. About the time I started third grade, I began receiving books from volunteer Braille groups, and a few that had been produced by the American Printing House for the Blind. As I said, my Mother made most of my beginning Braille books. She didn’t know Braille, but she was provided a Perkins Braille writer, and a copy of the 1959 edition of the Braille rules. She figured that she could Braille my books, because she only needed to know a bit more Braille than I did. My pre-Braille tactile materials were strings, rickrack, and other materials glued to pages in a book. Soon, I could read Braille far faster than Mother could ever produce it. Mother would Braille for four hours, and I would come home, and read all her work in less than thirty minutes. When I learned Braille, thirty percent of all blind children learned Braille.
Now in the twenty-first century things have changed. There are fewer volunteer Braillists, and there is a shortage of Braille teachers. Less than ten percent of blind children are taught Braille. Dr. Sally Mangold, the developer of a new product, SAL (Speech Activated Learning) hopes to improve this situation. SAL is a teaching aid that is designed to help a student learn Braille and develop good reading habits. SAL is 16 inches long, 13 inches wide, and 1.5 inches high. Most of the top surface is comprised of a touch screen that will hold an 11x11.5 inch piece of Braille paper. In front is a keyboard like those on a Braille ’n Speak. On the right side is a floppy disk drive for loading lesson materials.
To use SAL, a user places a Braille lesson page on the touch-screen and then closes a latch. SAL has a barcode reader that “reads” the page and sets the system to respond correctly to the user. The user listens to instructions, presses a prompt button when a request has been completed, and changes pages when requested. SAL responds when a student presses points on the lesson. A student might hear requests like:
“Press all the letter G’s in the first column.”
“Find the end of the third line.”
When a student responds correctly, SAL makes encouraging comments. If a student responds incorrectly, SAL will say “Wrong answer.” When a lesson page is complete, SAL gives a score so the student knows how well he or she did. The keyboard is used for two purposes. The first is to allow a teacher to perform administrative functions such as setting the language, backing up records, et cetera. The second purpose of the keyboard is to allow students to enter answers for math and advanced coursework.
When a new lesson is used for the first time, the user is asked to insert the diskette that comes with the lesson. SAL then reads the diskette and loads the appropriate files. A teacher can load in all the needed lesson materials before a student starts using SAL.
SAL also helps teachers by recording student responses. A teacher can upload these responses to a computer for further analysis.
In the future, software will become available for the creation of materials so teachers can create customized lessons as needed.
SAL is well-designed. A lot of thought went into designing the hardware and courseware. The SAL hardware costs $4,500, so it may be more suitable for a school to purchase than for an individual. In conclusion, it is too soon to know what impact SAL may have, but SAL is well-designed and has lots of potential. SAL will not replace a Braille teacher, but it can help reinforce good reading practices.
Exceptional Teaching Aids, Inc.
20102 Woodbine Avenue
Castro Valley, CA 94546
Toll free: (800) 549-6999
Phone: (510) 582-4859
Fax: (510) 582-5911
E-mail: [email protected]
Freedom Scientific Inc.
[PHOTO/CAPTION: Parents Carla and Michael Cerillo of La Mirada, California practice sight-reading Braille.]
Braille Workshop For Parents
by Nancy Burns, President
National Federation of the Blind of California
The education of blind children has been a top priority of the NFB of California (NFB/CA) for many years. This is exemplified by our legislative efforts over the past five years. California now has a Braille Bill and a Reading Standards Bill, which have been signed by the governor. During this legislative session we are working on the implementation of forgiveness loans for teachers working on a special education credential in the blindness field.
Last year this affiliate applied for a foundation grant from the Entertainment Industry Foundation. The application was submitted under the categories of literacy and education. The purpose, as stated in our proposal, was to teach Braille to parents of blind children. We received a grant in the amount of $5,000.
Joyce Wales, president of the California Parents of Blind Children; Caroline Rounds, an elementary school teacher; and I began planning for our first Braille Is Beautiful workshop. We set a date and the work began. We mailed flyers and began gathering materials for the workshop.
The response was amazing! Initially the cutoff number was to be twenty-five parents. The office was deluged with responses. The workshop grew to thirty, at which time we stopped taking applications. A waiting list evolved. We then scheduled a second workshop for the following
With some of the grant money we provided overnight accommodations at the Burbank Courtyard Marriott for parents traveling long distances. A mixer and registration were held in the NFB/CA office the Friday evening prior to the workshop.
The workshop was held from 9:00 a.m. to 3:30 p.m. on Saturday. Learning the Braille alphabet was stressed during the morning, and the afternoon was spent writing with a slate and stylus. A variety of fun, Braille-related activities were presented throughout the day.
We have already received many requests for a workshop in Spanish. We also have requests for workshops in other parts of the state. The NFB/CA will obviously look for additional grant funds to provide these ongoing workshops. It appears that a large number of parents of blind and visually impaired children are taking a serious step in order to be able to reinforce their child’s knowledge of Braille. What a wonderful turn of events!
[PHOTO/CAPTION: Taylor gives Bronwen an affectionate, sisterly hug.]
Perspectives on Blindness:
Siblings Have Their Say
A couple of issues ago, we published an announcement for the sighted brothers and sisters of blind kids. We asked kids to send us their thoughts, concerns, or observations about having a blind sibling. Of course, since sighted siblings, especially younger ones, may not read Future Reflections, we were counting on parents to read the announcement, and discuss it with their kids. Here are the responses we received:
We begin with a question-and-answer conversation piece between Nancy Tedesco of California and her six-year-old daughter, Taylor, about Taylor’s four-year-old sister, Bronwen, who is blind due to Leber’s congenital amaurosis. Here it is:
Bronwen and Me
Mom: How does it feel to have a blind sister?
Taylor: It feels great. Even though my sister is blind makes me a little sad, I love her very much.
Mom: Why does having her be blind make you sad?
Taylor: Because she can’t see where I am. It just makes me sad.
Mom: What kind of fun things do you do with your sister?
Taylor: I hold her. We play stuffed animals together. We jump. We climb together. She copies me sometimes, which I like.
Mom: Would you do anything differently if she could see?
Taylor: We still do everything even though she is blind.
Mom: Do the kids at school ever ask annoying questions?
Taylor: Yes! Because they found out and somebody asked if I loved my sister. Of course, yes! I love my sister. That was a stupid question.
Mom: Can your sister do the same things as other kids.
Taylor: She can climb like I do. I’m very happy she can climb with me. She can run like I can. That’s very well. Can I tell you a story that Mrs. Payne told me? [Mom: Okay.] One day there was a blind lady that went to a race and she won!
Mom: Why do you think Mrs. Payne told you that story?
Taylor: Because I told her my sister was blind.
Mom: And maybe she told you that story to show you that blind people can do anything anyone else can?
This next piece is from Catherine Badillo, age fourteen, from New York. Her article highlights the importance of giving sighted siblings good information about blindness and positive opportunities to meet and interact with competent, successful blind adults. The fact that Catherine’s parents must have been involved in some way in encouraging her to write and send in this article indicates to me that they are actively addressing Catherine’s worries. If you have a sighted teen that has not talked with you about their feelings recently, find an opportunity to bring the subject up. Sit down and read this article together, then read My Role Model (also in this issue). Listen, talk, and then listen some more. Worries such as the ones expressed in this article are too heavy for even a mature teen to bear alone. And sometimes teens don’t need answers; they just need a caring adult to listen to them, to affirm the legitimacy of their feelings, and to let them know that an adult is in charge. Here is what Catherine Badillo has to say:
Always a Part of My Life
by Catherine Badillo
When someone asks me to describe my family, I usually answer like most people. I tell them, “I have a mom, a dad, and an older sister named Sarah.” The only difference is that my sister is blind. Sometimes, it bothers me knowing that my family and I are so different from others. When I go out with my sister, people sometimes stare like we’re from another world.
Living with her is sometimes very frustrating. Such as when I try to help her, she acts like I am trying to take over her life. However, I remind myself that she will never get the same chance in the game of life as others. However, I know that I have amazing parents who have helped her succeed since day one. People can be selfish sometimes, and say that their life is so unfair. I have to admit that I am sometimes one of them. But I stop and think at the life that I lead and the life my sister is forced to lead. I think to myself, whose life is more unjust—mine or my sister’s? When I am out with my sister, people not only stare, but young children ask why her eyes are so different. I try to explain to them that she was born blind, and is not able to see.
I sometimes worry about how she will turn out when she gets older. Right now she is only 16, but college is coming up soon. I worry about how she will make a living in the real world. I think about her future and what she will become. I pray that she will succeed in whatever she does.
I love my sister with all my heart, and I would do anything for her just as any other sister would. However, in my case, things are a little different. I have different concerns than other siblings would. What keeps me thinking positive is knowing that she will always be a part of my life, no matter what.
The final three pieces come from John Cucco of New Jersey. The son of Carol Castellano, vice president of the NOPBC, John’s first piece was a speech he gave on a children’s panel at a state convention of the NFB of New Jersey when he was six-years-old. The second piece is a transcription of a talk he gave at age fourteen to a workshop of parents at the NFB convention, and the last piece he wrote especially for this issue. Here is John Cucco:
[PHOTO/CAPTION: John Cucco at the 2001 NFB Convention.]
by John Cucco
Hi! My name is John Cucco. I am in the first grade at Kings Road School in Madison, My favorite subject is math. I like to ride my bike and go roller-blading.
As the brother of a blind child, I think it’s FUN to have a sister who is blind! We play lots of games together. It’s really pretty regular to have a blind sister. Come on—she’s only a kid!
Because my sister is blind, I have gotten to know lots of friendly people—her Braille teacher and cane teachers and all the people in the NFB.
I think the best people to teach other about blindness are blind people! They know most about blindness because they’re blind!
Can Blind People Be Helpful?
by John Cucco
Hello. My name is John Cucco and I have lived with a blind person all my life so I consider myself an authority on the issue of whether a blind person can be helpful. However, this is an unfair task because I am a 14-year-old boy and I don’t really want to talk about why my 17-year-old sister is so helpful. But when I actually sat down and thought about it, I realized that Serena is often a useful person to have around. For instance, she is really good at Spanish, so whenever I have a question about my Spanish homework, I ask her instead of consulting a Spanish/English dictionary. She’s quicker and helps with the grammar, too. I know other kids also find her helpful because they often call for the homework. Serena is a good student and has a great memory, so she always knows what all her homework is. Serena is actually also known as “the family memory.” She remembers names, numbers, and even where the car is parked sometimes. If there’s no pen or pencil around, Serena is a critical asset to the family.
Another way Serena helps is in chores. Our parents have split up the chores and we share doing things like clearing the table and emptying the dishwasher. Although Serena is supposed to do half, sometimes she doesn’t do it and sometimes my parents ask me to do things and not Serena. I realized that I in fact help Serena to learn skills for daily living when this occurs. Whenever there is a chore injustice in our house, I whine, “Mom, Serena doesn’t have to do this!” To my dismay, instead of releasing me, Mom just makes Serena work, too. So Serena can do all the things I can, because I won’t tolerate doing it all myself. As far as chores are concerned, blind people should definitely be equal to sighted people. Thank you.
On Having a Blind Sister
by John Cucco
For as long as I can remember, I have had a blind sister. This is not new or unusual to me; it is my reality. I suppose it is different to have a blind sibling, but I wouldn’t really know. Blind or not, she’s my older sister, and at least towards me she acts just like any other older sister would—bossy sometimes, argumentative; she’s really a very normal sister.
There are many good sides to having a blind person in the family. A great one is a one-week vacation every year to the National Convention. I have been to Anaheim, Atlanta, Philadelphia, and Kentucky with the NFB. Over the years, I have made friends with other kids at the conventions, some blind, some who have blind siblings or parents. All of us are there because of blindness in one way or another, but blindness rarely figures into our conversations or activities. We all know blind people and grew up with blind people around, so it’s just not a big deal.
I guess that there are also some down sides to having a blind sibling. Every so often I have to read something to Serena from a book or packet that she doesn’t have in Braille, or wait at school while she prints out a test, but her blindness is not a big hindrance in my life.
Sometimes I wonder what it would be like if Serena had been born sighted. However, there isn’t really any way to tell. I don’t ever regret it, or wish that I could have a “normal” life. Her blindness has opened my mind to differences, and I have learned to cherish them. That is what it’s like to have a blind sister.
My Role Model
by Tracey Westphal
Reprinted from the Fall/Winter 1997, issue of The Sounding Board, a publication of the NFB of New Jersey.
Editor’s Note: In the preceding article, we heard kids talk about how they felt about having a blind sibling. In this article, we hear the perspective of a sighted daughter of a blind father. Here is Tracy Westphal:
When I tell people about my dad, Anthony Teunissen, I sometimes forget to mention that he is blind. I tell them he’s a long distance runner, a cross-country skier, and someone who loves the outdoors. I tell them he’s the only 46-year-old man I know who owns his own snow sled. Then I say, “Oh yeah, and he’s blind.”
That’s when they inevitably repeat what I’ve just said. “He’s blind?” they ask. I smile and nod. I love to shatter the stereotype of the blind guy who sits around and does nothing. My dad has his master’s degree in social work and works with the kids at his church. He is not afraid to try new things. And when he does sit, it is usually with a book-on-tape beside him.
My father is an inspiration. Whenever I am afraid to try something new, I think of his determination. I think of what it must be like to run down a street or sidewalk seeing only light and shadows. My dad may be blind, but he has vision. He has a better outlook on life than many sighted people.
My father’s retinitis pigmentosa (RP) is X-linked and passed on from generation to generation. This means I carry a faulty X chromosome in every cell of my body. And while my vision is not affected, my children’s vision could be. Any son I have has a fifty-percent chance of developing RP, and when this sobering fact starts to depress me, I think of my dad.
I think of his hugs and the way he tells me I’m beautiful whenever he hears my high-heel shoes click on the floor. I know having RP makes my father’s life very challenging, but it is also very fulfilling. And while my dad may never be able to look upon my sons, he will be able to hold their hands, run with them, ski with them, sled with them, and he will love them. And if my sons do inherit RP from me, I cannot think of a better role model for them to look up to, than my dad.