Future Reflections
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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Future Reflections
The National Federation of the Blind Magazine for Parents and Teachers of Blind Children
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Contents
Vol. 22, No. 2 Spring/Summer 2003
T-Ball Rules! Father Shares Passion for Baseball with his Blind Son
Walking Independently While
Following Someone
by Doris Willoughby
and Sharon L. Monthei
Navigator
by Sally Miller
The Courage to Dream
by Erik Weihenmayer
Self-Fulfilling Prophecy
by Michael K. Meyerhoff,
Ed.D
The Rebirth of Our Son
by Rhett Waldman
Promising Practices
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
Slate Pals
Of Jobs and Jobs
by Patti Gregory-Chang
Thought Provoker: Of Blind
Kids and Tree Houses
by Robert L. Newman
Transition-to-Independence
Club
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
Cooking Madness
by Carol J. Castellano
Supermarketing
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
Activated Learning
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
1800 Johnson
Street
Baltimore, MD 21230
410-659-9314 ext.
360
www.nfb.org/nopbc.htm *
nfb@nfb.org * bcheadle@nfb.org
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.]
T-Ball Rules!
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.”
Without warning
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.
Moving forward
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.
And next?
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 <nfbstore@nfb.org>. 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:
Module 46
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.”
Activities:
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.
Follow-up:
All Ages
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.]
Navigator
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.
They are:
1. South Carolina
2. North Carolina
3. Tennessee
4. Kentucky
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
Driving directions:
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.
Return Trip:
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.
Self-Fulfilling Prophecy
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 <epicntrtnc@aol.com>. 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.
Promising Practices
Fluency: Helping Your Child Read and Understand
FAPE-37
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: <fape@pacer.org>.
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>.
Additional References
Berliner, D.C. (1981). Academic learning time and reading achievement. In J.T. Guthrie (Ed.) Comprehension and teaching: Research Reviews (pp. 203-226). Newark, DE. International Reading Association.
Carbo, M. (1978). Teaching reading with talking books. The Reading Teacher, 32,
267-273.
Chall, J.S. (1996). Stages of reading development (2nd ed.). Forth Worth, TX:
Harcourt-Brace.
Chomsky, C. (1978). When you still can’t read in third grade after decoding, what?
In S.J. Samuels (Ed.). What research has to say about reading instructions (pp. 13-30). Newark, DE: International Reading Association.
Dahl, P.R. (1979). An experimental program for teaching high speed word recognition and comprehension skills. In J.E. Button, T. Lovitt, & T. Rowland (Eds.), Communications research in learning disabilities and mental retardation (pp. 33-65). Baltimore, MD: University Park Press.
Heckelman, R.G., (1969). A neurological-impress method of remedial reading instruction. Academic Therapy Quarterly, 4(40),
277-282.
Heckelman, R.G., (1986). N.I.M. revisited. Academic Therapy, 21, 411-420.
Hollingsworth, P.M. (1978). An experimental approach to the impress method of teaching reading. The Reading Teacher, 31, 624-626.
LaBerge D., & Samuels, S.J. (1974). Toward a theory of automatic information processing in reading. Cognitive Psychology, 6, 293-323.
Mathes, P.G., & Fuchs, L.S. (1993). Peer-mediated reading instruction in special education resource rooms. Learning Disabilities Research and Practice, 8, 233-243.
Perfetti, C.A. (1985). Reading ability. New York: Oxford University Press.
Samuela, S.J. (1979). The method of repeated readings. The Reading Teacher, 32, 403-408.
Stanovich, K.E. (1984). The interactive-compensatory model of individual differences in the development of reading fluency. Reading Research Quarterly, 16, 32-71.
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: <Bcheadle@nfb.org>.
[PHOTO/CAPTION: Maureen Callaghan, instructional assistant, and her student Brittani Brendel.]
Teacher Recognition Letter
Maureen Callaghan, Instructional Assistant,
Lincoln School
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.
Sincerely,
Carol Gurney
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 <Bcheadle@nfb.org>. 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:
Introduction
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.
Clothing
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
Kittens.)
Grooming
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.
Social Acceptability
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.
SLATE PALS
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 Nort