Future Reflections

The National Federation of the Blind Magazine for Parents
and Teachers of Blind Children

Vol. 23, No. 2                                                                    Special Issue—The Early Years

Barbara Cheadle, Editor

[PHOTO/CAPTION: “I believe with all my heart that we can give Jennifer, and thousands of blind children like her, a bright future full of hope and opportunity if we all work together with love and understanding.”

— Marc Maurer, President, National Federation of the Blind]

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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. 23, No. 2                                                                    Special Issue—The Early Years

Introduction

Chapter 1: Reach for the Stars

    Possibilities

       by Carol Castellano      

    Reaching for the Stars

       by Julie Hunter

    A Dad’s Expectations

       by Mark McClain

Chapter 2: Learning Begins At Home

    Helpful Hints for Parents of Blind Infants and Toddlers

       by Christine Faltz

    Let Your Child Play With the Pots and Pans!

       by Jacki Harth

    Supermarketing

       by Carol J. Castellano

    Active Learning and the Blind, Multiply Disabled Child

       by Lilli Nielsen, Ph.D.

    Chore Wars

       by Liz Wolf   

    Is Your Child Age-Appropriate?

       by Ruby Ryles, Ph.D.

    Advice to Parents of Partially Sighted Children

       by Barbara Cheadle

    “Mom, What Does Blind Mean?”

       by Pauletta Feldman

Chapter 3: Movement and Mobility

     Parents: Blind Children’s First Mobility Teachers

       by Joe Cutter

    Everyone Has a Cane, Just Like Me!

       by Nalida E. L. Besson

    Independence and Mobility

       by Doris M. Willoughby and Sharon L. Monthei

    Sharing Creative Movement with your Child

       by Edwina Peterson Cross

Chapter 4: Touch: Another Way of Seeing

    Another Way of Seeing

       by Deborah Kent Stein

    Hand-Over-Hand Guidance: What Lesson Do We Teach?

       by Andrea Story

    Educated Fingers

       by Barbara Pierce

Chapter 5: Literacy Is For Everyone

    Pre-Reading Activities for Blind Preschoolers

       by Ruby Ryles, Ph.D.

    Your Child’s Right to Read

       by Carol Castellano

    Research Study: Early Braille Education Vital

       by Ruby Ryles, Ph.D.

    Why Megan is Learning Braille

       by Marla Palmer

Chapter 6: Formal Education

    Expectations: The Critical Factor in the Education of Blind Children

       by Fredric K. Schroeder, Ph.D.

    The Blind Child in The Regular Preschool Program

       by Ruby Ryles, Ph.D.

    Kyra’s Kindergarten Year

       by Barbara Mathews

Chapter 7: Parent Power

     National Organization of Parents of Blind Children

Chapter 8: Future Reflections

    Responsibilities of a Seven-Year-Old

       by Hannah Weatherd

    My Days Are Full

       by Michael Taboada

    What Freedom Means to Me

       by Nicole White

    When the Blizzard Blows

       by Marc Maurer

Copyright © 2004 National Federation of the Blind

[PHOTO/CAPTION: Barbara Cheadle]

Introduction

After the Crying, Then What?

Barbara Cheadle, Editor, Future Reflections, and President,

National Organization of Parents of Blind Children

Your child is blind. Well, maybe not blind, blind—as in totally blind—but the vision loss is significant and the doctors can’t fix it. At least, not right away. Maybe someday—you’re not ready to give up hope yet—but it’s definitely not going to happen today, or tomorrow, or next year, or even five years from now. One thing is for sure: it’s time to stop crying and do something. But where do you go? What do you do? You know you need answers, but you’re not even sure what questions to ask.

This special issue is for you. It makes sense to go to experts when you have a problem. And who is more “expert” on blindness than those that live it everyday—the blind themselves—and parents of blind and visually impaired children. For over twenty years— through this publication and the many activities of its division for parents, the National Organization of Parents of Blind Children (NOPBC)—the National Federation of the Blind (NFB) has offered hope, inspiration, and the most reliable, practical information available.

In the NFB, we believe that blindness does not need to be a tragedy. With the proper attitudes, education, blindness skills, and opportunities, a blind child can grow up to expect all the same things his or her sighted peers expect: a job, a family, friends, and a place in the community. We also believe that there is no great mystery about blindness or the non-visual techniques used by the blind to get along in the world. In other words, typical parents—this means YOU—are fully capable of raising blind children to become competent, well-adjusted adults.

The articles in this special issue demonstrate this philosophy as applied to real-life situations and real children—including those with additional disabilities and those with partial sight. As the title suggests, the focus is on the critical early years in a child’s life: birth to eight. Written by a mix of parents, blind adults, and professionals, the articles are classics from the pages of Future Reflections that have been reviewed and updated for currency. The articles are organized by topics (chapters) so that you may pick and choose what is most relevant or interesting to you at the moment.

But there is a reason the first chapter is first. The NFB can do more than help you with tips and techniques; we can help you catch a vision of a future full of hope and opportunity for your child. So, we invite you to turn to page three and “Reach for the Stars” as you begin your journey toward becoming the best parent and advocate you can be for your child.

Chapter 1:

Reach for the Stars

[PHOTO/CAPTION: Carol Castellano and her daughter Serena Cucco.]

Possibilities

by Carol Castellano

It took my daughter Serena a long time to decide just what she wanted to be when she grew up, whereas, my son was only four when he decided that he would be a dinosaur scientist. It wasn’t until she was seven that Serena realized that her destiny in life was to be a folksinger. Happily she played the chords to her favorite song, “Michael Row the Boat Ashore,” on my guitar.

Then came the Presidential campaign of 1992. Serena was eight. She sat rapt before the television listening intently to the speeches of both parties. After the summer’s two national conventions, she realized that it wasn’t a folksinger that she wanted to be after all ... it was a folksinging Senator. By late fall, having heard all three Presidential debates, Serena was going to be President.

Her barrage of questions about how she could learn to be President and conversations about what politicians do kept up for so long that my husband and I were convinced she really might go into politics when she was older.

In the late spring of this year, Serena went out with her father to pick early snow peas from the garden. Coming inside with her basket of peas, she told me she was very interested in gardening. “That’s wonderful,” I replied. “You’ll be a big help to Daddy.”

Overnight Serena’s interest must really have taken root, because the next day she asked me if I thought the gardens at the White House were too big for the President to tend, since the President is such a busy person. “Yes,”

I replied. “I’m sure there’s a staff of people who take care of the White House gardens.” “Well then, I won’t be a gardening President,” she told me. “I’ll just be a gardener.”

The desire to be a gardener was still but a tender shoot when Serena took a piano lesson—just a few weeks after picking those peas—and realized it was a pianist she wanted to be!

Serena is at such a wonderful stage of life! Interested in everything, trying everything out, she sees the world as her plum, ripe for the picking. She believes in herself, as we believe in her. And since what people believe largely determines what they do, it is critically important for parents of blind children (and other adults in the child’s life) to have positive beliefs about blindness and what blind people can do.

If we are told (in a journal article or by a teacher of the blind, say) that blind children usually do not or cannot learn how to do a certain task, and if we come to believe this, chances are we will not give our child the experience or opportunity anyone would need in order to do this task. And chances are the child won’t learn to do it. Imagine, though, if we—and our blind children—were never told that blind people couldn’t accomplish a certain thing. Imagine what the results might be if everyone believed that blind people could do anything they wanted to! Well, I believe this—and attending National Federation of the Blind National Conventions has solidified this belief for me.* It is this belief which guides the way I bring up my daughter.

Sometimes in the literature I read the phrase “accepting the child’s blindness.” That word acceptance always causes me concern; what different people mean by acceptance can be entirely opposite things. To some, “accepting the child’s blindness” means accepting—or coming to believe—that because the child is blind, there will be limits to what the child can do, limits to what he or she can understand, limits to what he or she can learn. (They often refer to these beliefs as “being realistic.”) It is easy to see what the effects of that kind of thinking will be.

When I consider the term “accepting the child’s blindness,” I think about accepting that the child is blind, learning and coming to believe that blindness need not stop the child from achieving what he or she wishes, and allowing, indeed insisting, that the child learn the alternative techniques of blindness that will enable him or her to achieve the desired results!

Find a way, parents. Keep all the doors open. Glory in the exhilarating feeling of watching a child look toward the future and see only possibilities.

*Post Script: At national conventions of the National Federation of the Blind there are opportunities to meet blind people from many walks of life. My husband and I know personally or have heard speak, a blind high school teacher, college professor, mathematician, scientist, car body mechanic, industrial arts teacher, foreign service officer, engineer, a high-performance engine builder, and a man who has sailed solo in races from San Francisco to Hawaii. Attendance at national conventions has enabled us to see firsthand that blindness does not have to stop people from achieving what they want to achieve. This knowledge gets passed along to our daughter and, equally as important, to the teachers and other professionals who work with her. Go to a national convention! It might turn out to be the most important thing you do for your blind child’s future.

[PHOTO/CAPTION: Julie Hunter and daughter, Lauren.]

Reaching for the Stars

by Julie Hunter

Fifteen years ago on a warm June morning my husband, Bob, and I drove to the hospital for our appointment with destiny. Because of delivery problems with our first child, we had the luxury of being able to choose the day and time of our second child’s surgical delivery. Later that morning, we were overjoyed to welcome a baby girl into our family—finally, a girl where for generations (on my husband’s side) there had only been boys! She was a perfect baby—healthy, dark hair, big blue eyes, and a pretty little face. We couldn’t have been happier! Little did we know that this tiny, innocent babe in arms would turn our world on its ear.

Our new daughter, Lauren, thrived in her first few months at home. She was begrudgingly accepted by her two-year-old brother, Mark, and gradually our family life fell into a happy new routine. But as she grew, some little concerns tickled the backs of our minds. She squinted when she was out in the sunlight—typical of newborns we were told. She didn’t smile when someone came to her crib, but she would smile when held or spoken to. Finally, a jerky eye movement that we assumed would pass with her infancy became more and more obvious. Then came that fateful day when the doctors’ tests concluded that our daughter’s retinas were not functioning properly. She would have visual impairment, but no one knew to what extent. She might even be able to drive, we were told.

Of course we were optimistic and clung to the best-case scenario—that the condition wouldn’t worsen, that she would be mildly visually impaired, but not (God forbid) blind. As the months passed, it became obvious that this was not a stable condition. Her visual acuity was gradually fading. We mourned for every lost dream. We felt guilty that we had unknowingly passed on what we were told was a recessive genetic defect. We felt depressed about the future. But it’s no fun living in depression, so something had to give! That something was our first change in attitude about blindness. This was our child! She was bright and charming, and we vowed that vision or lack of it would not define her life. We didn’t want to hear any more sympathetic words from well-meaning neighbors and friends. Give up your dreams? Not on your life!

And so we were inaugurated into a whole new world—a world which has caused us to re-examine our values and broaden our horizon—a world which has brought us support, friendship, and a cause we believe in. Who would have thought that such a tiny baby born on a warm June morning would be responsible for all of that? At what point do we move from seeing the glass as half-empty to seeing it as half-full? For us it came gradually as we learned, through the National Federation of the Blind, that the possibility was there that our dreams for Lauren could be fulfilled. That foundation was in place for us when we sustained our second blow—discovering that Lauren also has a progressive hearing loss. As with the vision loss, which is now total, the hearing loss has been gradual. Lauren is now fifteen years old. She got her first set of hearing aids when she was eight. Her hearing loss has progressed from mild to moderate, and now hovers on the line between moderate and severe. Again, doctors are no help to us. They don’t know why and can’t predict what the future holds in store. We just live our lives and take what comes.

But one thing we have learned over the years is that fear about the future results from ignorance and failing to take control. If you do all you can to learn about your nemesis, never lose sight of your goal (which in our case is to achieve maximum independence), and stay in charge of your destiny, then the future is not so frightening. In relation to the deafness, we are still into the process of learning. The more we learn, the less scary the future seems. As we meet and talk to other parents with deaf-blind children and with deaf-blind adults, we are reassured that there can be a quality life for an individual who is blind and deaf. Our job is to make sure that Lauren has the adaptive skills necessary to remain an interactive member of society. There is work to do, but I feel confident that my daughter will achieve her potential and no matter what the future brings, we will never stop reaching for the stars.

[PHOTO/CAPTION: Mark McClain and Macy with her first cane.]

A Dad’s Expectations

by Mark McClain

When we found out that Macy was blind, my first thought was “Oh my God, what in the world will she ever do! What a pathetic life she will lead, and we will be saddled with her till the day we die.” This wasn’t what I envisioned in becoming a parent.

At first, my wife Crystal dealt with the education requirements, early intervention, reading about blindness, issues concerning the legal requirements, and so forth. I really didn’t start helping with the blindness issues until after I attended my first National Federation of the Blind (NFB) Convention in Dallas in 1993. I quickly learned that there is so much information available to help parents. Unfortunately, that is also part of the problem; you get overwhelmed and start to feel “where do I start now?” Luckily I had a wife who found the NFB. We soon discovered that you learn a lot by just observing blind adults and talking to them to learn information. Blind adults in the NFB have also pointed us in the right direction regarding attitudes; we now believe that Macy can do whatever she wants to do. We not only believe that philosophy, we preach it and try to live it as well. Macy’s sighted twin sister, Madison, is our measuring stick to monitor her performance to her sighted peers at this young age.

It hasn’t been that long ago that I was teaching Macy how to ride her bike with training wheels. Madison was able to do it, so come hell or high water, Macy was going to ride her bike, too! Unfortunately she didn’t pick it up nearly as fast as Madison, but finally after yelling, soul searching, and use of duct tape, she rode her bike. She didn’t like this experience because when she began to tip over she couldn’t catch herself since her sadistic father had duct-taped her feet to the bike pedals. But she did learn, and the duct tape came off. Now she has a blast!

Earlier I stated my fear that we would be saddled with our “poor helpless blind daughter” for the rest of our lives; but now Macy operates under the new McClain program entitled “Eighteen and out.” When she graduates from high school she is out of the house without a choice—college! Good Luck and see you later—maybe we’ll help pay for school (just kidding—about the “pay for school” part, that is)!

I am certainly not saying that Macy can learn everything as fast as her sighted sister, but with a lot of repetition and some creativity, she can do it. We as parents need patience, patience, patience. When Macy accomplishes the task, the sweet reward is knowing that all the hard work was worth it.

I am not a card-carrying fanatic about organizations, but I will certainly say that I have learned a lot from the NFB. I would never have had these lofty goals had it not been for this organization. I am willing to take risks with her—riding her bike, playing tee-ball, jumping on the trampoline, helping around the house, and so forth. Anybody who knows me, absolutely knows that I don’t baby her. Our neighbors probably think that we are crazy parents, since we expect so much from her. I now believe that Macy is capable of competing with her sighted peers, and I intend to do my part as her Dad to see that she lives up to that expectation.

Chapter 2:

Learning Begins At Home

[PHOTO/CAPTION: Christine Faltz]

Helpful Hints for Parents of Blind Infants and Toddlers

by Christine Faltz

When a blind or visually impaired child is only a few months old, most parents are still trying to cope with the fears and uncertainties of having a disabled child. Conflicting information and advice is especially overwhelming at this time. This is often compounded by the unfortunate attitudes of many in the medical profession and, worse yet, by those who work with the blind. We have come a long way but, even today, an alarming number of professionals working with blind children and adults have low expectations for their clients and such negative attitudes that they act surprised when confronted with successful, self-sufficient visually impaired men and women.

Despite these attitudes we must remember that our attitudes are the ones which will affect our children the most. Even in the face of deeply entrenched stereotypes and professional misinformation and biases, we must hold fast to the idea that if we pay our dues now, our children will reap priceless benefits in self-esteem, self-advocacy, and the knowledge that we believe in their individual potential.

Positive attitudes and matter-of-fact adaptation of the world for our blind and visually impaired children starts at birth. As far as basic needs—holding, feeding, dressing (assuming no medical complications)—there is nothing extra or special that must be done for the blind infant. There are, however, very simple techniques that can be employed to give your baby as much information as possible about his or her environment.

When a baby is only a few months old, her ability to hear you does not necessarily mean your location is known, and she has no way of knowing that you are, perhaps, about to pick him up or fix her blanket. Before you pick up the child or move something nearby, state what you are going to do, or at the very least say the child’s name before touching her. There is no need to handle a blind child more carefully than you would a sighted child; she is not more fragile and is not predisposed to being extra anxious or fussy. Keep in mind that for the first few weeks of life, sighted babies are only able to see people and objects very close to their faces anyway.

When you take your child from room to room, outside to the car, or into the store, to the extent that you are able to do so under the circumstances (time, who’s with you, etc.), you should state simply where you are going and what you are doing. Hearing everyday speech is good for all babies’ language development, but the blind child will be able to use your verbal cues to begin distinguishing, with her other senses, a change in location. For example, my 20-month-old daughter was able, at about one year, to go to the kitchen or the bathroom when told to do so. I spent a lot of time telling her: “We’re going to go into the kitchen so Mommy can clean up. We’re going out of your room,” (putting her hands on the door) “and we’re going straight. Mommy and Daddy’s bedroom, where we sleep in the bed at night, is on the right. The bathroom, where you have your bath, is on the left. After the bedroom are the steps going downstairs to outside. Now here’s the living room, with the television and the stereo. We turn left, and here’s the kitchen.”

I tried to use the same descriptions as often as possible. When I had the time, I showed her the furniture in the room, spoke its name and its purpose. Even when very young, Samantha was very attentive when I spoke, and though she obviously didn’t understand most of what I was saying in the beginning, repetition eventually led to absorption and understanding.

An older infant and toddler will often attempt to do what Mommy and Daddy are doing: fold laundry, clean the table, wash the dishes. When it is safe to do so, I show Samantha what I am doing and explain: “Mommy is giving the dirty dishes a bath. They have food on them. Then we’ll dry them with a towel, just like you after your bath.”

Don’t take anything for granted. If your child is curious, show whatever it is safe to show him. Then, when your attention is desired at an inopportune moment, “One minute, sweetheart; Mommy’s cleaning the table” will actually have a concrete meaning; it will not merely be a jumble of words that he has heard but doesn’t understand because he cannot see what it is you are doing. Eventually, he will put together your location, the sound of the water on the rag, the sound of the rag on the table, and will know on his own what you are doing. But until you give meaning to the sounds and smells and textures in his world, your blind baby cannot learn the function of the objects in his environment. Do not feel foolish describing every little thing and activity to your baby. It can only help her.

I personally don’t like playpens, especially for totally blind infants. Put your child on the floor with some toys; place a noisy toy out of his reach to entice him to move to find it. This way he can learn that his environment is far more than what he is readily aware of. When he begins to creep or crawl, show him the boundaries between rooms, the extent of rooms, how he can move around tables and chairs, but not around walls. Expose your child to everything: show him the steps, the trees in your yard, the grass. Take him to the beach and show him the sand, how the water moves, sea shells. Show him the inside and outside of the car his car seat is in. Show, show, and show some more—hands on whenever possible—with constant explanations using simple statements. Teach care providers to do the same. Place toys on accessible shelves and show him where they are in relation to other objects in the room. As he begins to show understanding of words and begins to use words to express needs and desires, you will see that these efforts have paid off. By the time he is walking, your child will know “right” and “left” and will have no trouble moving about familiar surroundings with ease.

Blind herself, Christine Faltz is the mother of two blind children, a girl, Samantha, and a boy, Braden.

Let Your Child Play With the Pots and Pans!

by Jacki Harth

Bringing the world to my two-year-old son (who happens to be blind) seems like an overwhelming job and I used to feel very guilty for not sitting down and working with him the way his teachers did at school. Then Tyler showed me how he could practice these skills at home with “house stuff.” Here is an example. I had read in many general articles about children (and remembered that this was true with my other children) how children love pots and pans. Little did I know what a gold mine of education we had in one little cupboard.

Orientation and Mobility/Finding the Cupboard: Since Tyler enjoyed making “music” with the pots and pans, it was a built-in reinforcer for him to find the cupboard, cruise past the stove, etc. He cruised back and forth for many weeks on that side of the kitchen finding landmarks and feeling very proud of himself.

Sound Localization: It didn’t take him long before he was throwing a pan across the floor and crawling or scooting after it.

Object Permanence: Now this made sense! Open the door and they are always there.

Fine Motor Skills: Learning how to open the door was a task that took time and concentration. We also talked about the front of the door, the back and inside of the cupboard, etc.  It was a great opportunity to talk about these concepts. The fine motor skills were tested whenever he tried to pick up an upside-down cake pan (try it once).

Gross Motor Skills: Cruising to cupboard then walking across the kitchen freestyle (very scary for mom). He also walks around with a pan or two and practices sitting on the bigger ones (or in them).

Discrimination: There are always big pans, little pans, heavy pans, LOUD noises, soft noises, and so forth.

Self-Help Skills:  Throw in some spoons and cups for an added surprise. Here again, more concept building, such as big and little, etc.

Language and Communication: With practice you will start describing your child’s actions while he is on the go. “Open the door.” “That’s a heavy pan!” “Go get the pan.” “Sit down,” and “Stand up.”

If you don’t want your good pans thrown across the floor, go to an auction or second-hand store and buy a boxful of metal ware. And if you think the noise will drive you nuts, you’ll get used to it. The satisfaction and education your child is getting is well worth it. And just think of all the education he is receiving while you’re washing dishes.

Other suggestions (Our O&M specialist gave me these suggestions.)

When your child is learning where the stairs are, put the safety gate on the second or third step-up or -down. This will give him the independence to investigate without falling all the way down.

Have a special activity that your child likes in each room of the house to encourage room-to-room travel. For example, an organ or keyboard in one room—you can turn on the demonstration tune to give him a continuous sound cue to find.

An old coffee pot full of cookie cutters and wooden spoons encourages movement to a hard-to-reach spot like around the table. A drawer full of brushes and combs in the bathroom is a favorite spot, and a sit-and-spin toy provides an excellent sound cue for fun.

Tyler finds these favorite spots easily now by himself, but it took many months of showing him how to get there, and lots of practice to get to this point. As he gets older he will get bored with these and challenge us to show him new things.

Going to new and noisy places is always a challenge for all of us.  All that I can say is talk, talk, talk about the sounds and LET HIM LISTEN. I always want the public to see what a normal active child he is, but I’ve learned that a good long while in mom’s arms listening will put the sounds and feelings in perspective for him, and then—when he is ready—he will get down and investigate.

When introducing a new experience (like swimming in a small pool) you may have to work up to the complete “normal” experience. We did this by letting Tyler sit in a separate pool, first on a chair with just his feet in the water, and bit by bit, working up to swimming by himself. It was only about a week before he was swimming in the pool with the others and having a great time.

[PHOTO/CAPTION: These two teen boys are learning how to grocery shop independently—a task that will be much easier if, like Serena, they had many preschool experiences shopping with mom.]

Supermarketing

by Carol J. Castellano

My daughter Serena loves our weekly trips to the supermarket. Her fun begins outside the store, where she chooses just the right basket to sit in. Then we make the automatic doors open. This must seem like some sort of magic to a child, opening onto an interesting world of smells and sounds and tastes and people and, from a parent’s point of view, learning opportunities. Serena was three-years-old when we began our supermarket routine. You can adjust your ‘lessons’ to the level of age of your child.

“Serena, Daddy needs some pears.” I announce as we enter the produce department and we begin to choose a few. “Is this a good one?” I ask her. “Does it have a good smell? See how it feels. Here’s the stem! Oh, look, there a leaf on that stem! Let’s get a plastic bag to put our pear in.”

Serena helps me peel a bag off the roll and helps to tear it along its perforated edge. As we put in the pears, we count them. “One, two, three, four. That’s one for Daddy, one for Mommy, one for Serena, and one for John. Do you think that’s enough pears? Let’s feel them through the bag. Can you feel four pears in there?” On to the apples. “Hmmm, these apples feel different from the pears, and they smell different, too. But look they have stems. Apples and pears both have stems.”

We go on through the produce department discussing each of the fruits and vegetables that our family eats. I find that giving Serena a personal fact or two about each item makes it more meaningful to her. “Mommy likes Delicious. Daddy likes Macintosh.” Or we might sing a song (Apples and Bananas, or Day-O) or talk about the guacamole we’re going to make out of the avocado. I also use storybook details to expand Serena’s world. “Look, here is parsley, just like Peter Rabbit was looking for in Mr. MacGregor’s garden.” In these circumstances, Serena is very willing to handle and explore things she ordinarily would be reluctant to touch, such as lettuce or broccoli.

In order to give her an idea of how much food a supermarket sells, I tell her to lean over and reach out her hand. “This is a long aisle! Serena, they have cookies and cookies and cookies and cookies and cookies and cookies in this aisle!” I tell her as her hand passes over package after package. We do this in several aisles, using items that she is particularly fond of or interested in. I include as much incidental information as I think Serena can absorb while still having fun. If the new information can build on something already known, it will be easier for the child to learn. For example, “The bread in this package is made from wheat. Do you remember when we saw the wheat at the farm?” You could include whatever information would be relevant to your child. Think about what knowledge he or she already has that could be added to.

Serena’s favorite aisle, after cookies, is the diary aisle. She loves to handle and count the packages of cheese, the containers of milk and orange juice, and the eggs in the carton. All kinds of learning can go on here. “This carton of milk is much smaller that the carton of orange juice.” (Use the terms quart and half-gallon if your child is ready for them.) “Wow, the orange juice is so heavy I can hardly pick it up.” We drop it cautiously into the cart behind her and listen for the thud. “The juice inside the container comes from oranges just like the ones we chose before. You have to cut the orange open and squeeze it to get the juice out. Serena, help Mommy check the eggs. We don’t want to bring home any broken ones. Let’s count them. Twelve, that’s a dozen. We’ll have these eggs for breakfast tomorrow.”

I try to let Serena take each item from the shelf. If she cannot reach, I put it in her lap so she can look at it. Then I say, “Let’s put it in the basket BEHIND you.” Heavy emphasis on the “behind” got Serena to learn that particular preposition and its meaning very easily. The supermarket cart seat is also good for “beside you” and “next to you” and Mommy is standing “in front of you.” You can practice memory skills by asking “Do you remember were I put the bananas? Yes, they’re on the seat next to you.”

Throughout the store we talk about shapes and sounds and textures. “The peanut butter jar is round.” “The macaroni in this box makes a lot of noise when you shake it. When the macaroni is cooked, does it still make noise? No, soft things don’t make much noise.” “These potatoes are dusty with dirt. They grow in the ground, right in the dirt. We’ll have to scrub them really well before we cook them.”

We make a stop at the courtesy desk. “Mommy has to get the check approved. Here, Serena, could you hold the checkbook for me? Now hand it to me, please, and hold my pen.” I think using proper terms such as “courtesy desk” and “approved” gives the child the best exposure to the activity and expands the vocabulary as well.

Finally to the checkout, “Serena do you hear the cash registers ringing? We’re at the checkout counter now. Mommy is putting the groceries on the conveyer belt. Do you want to feel it move? Look, here are the pretzels we took off the shelf before. I took them out of the basket and put them up here. Now the cashier will tell me how much money our groceries cost. As soon as I pay we can take our groceries home.”

Usually by this time three packages of snacks are open, we are both tired, and we can’t wait to get home. But I know the fatigue is worth it, because after every trip to the market, Serena has learned at least a few things and has further solidified the knowledge she had before. She is more understanding of, and drawn into, the comings and goings of the world around her.

[PHOTO/CAPTION: Dr. Lilli Nielsen]

Active Learning and the Blind, Multiply Disabled Child

by Lilli Nielsen, Ph.D.

A native of Denmark, Dr. Nielsen lectures and conducts workshops worldwide. The following article is an edited version (with permission of the author) of the introduction and the first chapter of her book, Early Learning Step by Step: Children with Vision Impairment And Multiple Disabilities. Following the article is a review of the book and information on how to order it and other materials developed by Dr. Nielsen for use with blind children who have additional disabilities.

A mother said: Do you think that she will ever be able to eat her food herself or be able to walk?

A father said: What else can we do? We are doing a great deal, but are we doing the best?

A teacher said: I have the feeling that I know too little about how children learn. I simply do not know what the next step is.

These statements refer to children who have severe learning difficulties. They represent the uncertainty that many parents and teachers feel while trying to help their child or pupil develop. The child in question may be blind or partially sighted—often it is a child who has one or more disabilities other than the vision impairment.

Achieving a skill is often referred to as reaching a milestone. While growing, children without disabilities become able to sit unsupported, to walk, to babble, to talk, to establish emotional attachments with relatives, and to make friends. They also learn to actively play and participate in the events happening within their surroundings.

Gradually they become able to solve problems and to learn at higher and higher levels. Thus, step-by-step, children develop skills without undue effort. Now and then, a child may achieve some skills either earlier or later than considered within the norm.

However, small deviations from so-called normal development are usual. Some children with vision impairment achieve skills without any great difficulty, while some have mild difficulty, and some have severe learning and educational difficulties.

When a child with vision impairment or other disabilities fails to reach a common milestone, (for example, the ability to eat, to walk, or to talk) parents, other caregivers, and teachers often feel bewildered and uncertain about what to do and what to expect the child to do. Although the reason for this uncertainty may be lack of knowledge about the child’s potential, anxiety concerning the possibility of emotional problems, and anxiety for the child’s future; it may also be due to lack of knowledge concerning the sequences of learning that a child follows while developing a skill.

The purpose of this book is firstly to review certain sequences of learning, thus making it easier for parents and teachers to verify what the next step probably would be, and to discover whether a child is missing any links in any sequences of learning. Secondly, it is to suggest approaches and environmental interventions that may facilitate the child’s learning.

So the suggestions given in this book should be considered partly as means of preventing delays, and partly as remedies to problems caused by delays or the child’s handicap(s).

Chapter One

Considerations on Methods

The Methods of Training and Teaching

In my point of view, the current approaches to training and teaching are developed from the philosophy that since children with disabilities do not commence spontaneously to perform basic skills, they must and can be trained or taught to achieve them. Lessons using this approach are often carried out by guiding the child’s hands, feet, or body to perform the movements necessary for the task in question, or by persuading the child to look or listen. After which the child is supposed to imitate the adult or to do as told. If the child turns away from the task or becomes interested in other things, he is persuaded or forced to continue with the task. It is considered important that the child become accustomed to concentrating on a task. Likewise, it is considered to be confusing for the child if too many objects are presented during a task-training session. These methods of training and teaching are accepted and used traditionally or as a basic requirement all over the world. However, for many of the children with severe learning and educational difficulties, these methods have failed to deliver the expected result. Sometimes these methods have served to prevent further delays but, in too many cases, they have failed to facilitate development. In some cases the child is exposed to the same approach for years in spite of the obvious lack of result. In other cases less and less effort is made to train the child until, finally, the method is abandoned without being replaced by another one.

However, to continue a method knowing that it does not help the child, or to give up entirely, is the same as saying that the child is unable to learn or unable to comprehend anything. In other words, it is assessing the child instead of being critical of the method used. In some cases, the methods of training and teaching have a negative effect in that the child either becomes aggressive or withdraws within himself. In too many cases, the method of training the child involves the hand-over-hand approach. In some cases, this results in the child becoming unwilling, for example, to eat, unless an adult is prompting him to take the spoon or fork or bread. In other cases the child refuses to allow the adult to hold his hand. That is, the child withdraws his hand whenever the teacher/adult tries to guide his hand or even whenever he experiences physical contact with any object.

In some cases, the child is so spastic that no method, for example, with regard to learning to eat, is used at all—the child is simply fed at every meal. It is considered that the child will never be able to learn to eat, wash his hands, undress, or do anything else for his own welfare. So, the decision as to whether or not the child can achieve a skill is often related to the complexity of the child’s handicaps rather than to the fact that almost all children are able to learn. (Only the few children who suffer from a progressive disease are sometimes unable to learn. And who knows when a child is going to die?) Also, training the child in so-called splinter skills seems to have failed in that the child does not experience any connection between his abilities, and so has difficulty in developing self-identity and independence.

In some cases, the child actually does perform a skill in which he has been trained, but most often he only uses this skill when prompted.

By the way, when is a skill a real skill? A skill that is used only when the teacher requires the child to do as he is told or is used only after the adult has been prompting or persuading the child for a while, is a trained skill which probably has not become part of the child’s personality.

It must be difficult, if not impossible, to initiate action using a skill that has not become a part of one’s personality. The method of training and teaching seems to increase the risk that the child will begin to reject or withdraw when approached with tasks, or will behave in an autistic-like or stereotyped way, or will perform the trained skills like a robot. Furthermore, there is the risk that the child becomes unable to initiate performance of any skill unless prompted, encouraged, or asked to do so.

And so the child will, therefore, continue to depend on another person. Also, as part of this method, the adults—that is, parents, caregivers, teachers, and other professionals—are required to see to it that the child performs the skills to which so much time had been given to train him. The following warning can be heard: If you help him instead of requiring him to do it, he will forget to do it, and we will have to start training him in that skill again.

But do these children really have such a poor memory? Do they really have such poor comprehension? They do remember how to withdraw, they do understand the message when prompted, and they do know how to avoid interaction.

Would learning at the developmentally appropriate level have been of more benefit for these children than age-appropriate education or training? Is it accurate to think that a child with disabilities can achieve age-appropriate skills without first having had the opportunity to learn the basic skills that a child without disabilities needs before he commences to perform the complicated activities belonging to higher levels of development?

The Approach of Active Learning

In order to develop new approaches, children without disabilities were observed for the purpose of analyzing the ways in which they achieve basic skills. It was found that infants and toddlers without disabilities learn from doing (this way of learning, incidentally, fitted poorly into the educational methods to which the children with disabilities most often were exposed). Similarly, it was found that until the age of 30 to 36 months the child without disabilities is unwilling to accept being trained or taught.

These are the questions we then asked: What is it that a child without disabilities learns? How does he learn this? Does a child who is blind, spastic, or has severe learning difficulties learn in the same way as the child without disabilities? Would these children also learn if they were allowed to explore and experiment, and to do so in their own way? Could and should anything special be done to facilitate this learning?

During the past 20 years, we have been developing alternative educational solutions for the most common learning problems seen in infants and children with vision impairment without or with other disabilities. These include: achieving head control, being able to sit unsupported, learning to eat, learning to stand and to walk, learning spatial relations, achieving object concept and self-identification, learning to talk, learning to play constructively, and learning to initiate interaction with others.

Although we still have a lot to learn concerning facilitation of learning for these children, we have succeeded in giving them opportunity to learn by introducing the approach of Active Learning. The philosophy behind the approach of Active Learning is that, if given opportunity to learn from his own active exploration and examination, the child will achieve skills that become part of his personality. These skills, then, become natural for him to use in interaction with others and to use for the fulfillment of his own needs. They will gradually make him ready to react relevantly to instructions and education. In other words, he will develop to be as independent as possible.

What is then, in a nutshell, the difference between the common educational method of training and teaching and the approach of Active Learning? From the author’s point of view, the starting point in commencing to train and teach a certain skill seems to be the final skill itself. In contrast, the starting point in Active Learning is letting the child learn the basic steps that lead to mastering the skill in question.

Also, as long as the child is developed to a level younger than the level of three years of age, I consider it impossible to train or teach that child.

The Concept of Learning

Learning is the process that happens in the child’s mind when he has opportunities to perform all the steps necessary for achieving a skill.

The first prerequisite for learning is that the child is able to move and that objects are available within reach (at least as long as the infant or child is not mobile). It is also necessary to have the opportunity to share experiences with others, to imitate others, and to interact with others.

Thus, learning becomes possible if:

* He is given opportunities to learn from the level to which he is developed.

* He can discover, experiment, and explore with many ways of performing an activity and thus learn the most practical way for him to perform a skill successfully.

* He has sufficient time to experiment and the opportunity to repeat an action as many times as necessary in order to store the information gained and to confirm that a specific way of acting gives the same result, and so comprehend the reality of it.

* He has the opportunity to compare his experiences. This allows him to discover similarities and differences, to recognize specific experiences, to associate a new experience with others already stored in the memory, to link experiences with each other, and later on to categorize and generalize experiences.

* He is given the opportunity to establish even development across the levels of the various learning processes, thus avoiding the missing links in one learning process that would have a negative or arresting effect on another learning process.

* He has somebody with whom to share his interest and experiences. This allows him to learn how to initiate interaction.

Infants and children learn within several areas of development simultaneously. Ability achieved in one area influence abilities in other areas, so that the areas are intertwined and experienced by the infant or child as a small entirety. Through self-activity and interaction with others, this entirety should gradually contain more and more detail as the child comprehends and masters the several parts, becomes able to connect these parts, and finally is able to perceive a bigger entirety.

In summary, learning is achieving knowledge by being active.

Conditions for Learning

Three main conditions should be considered while introducing the approach of Active Learning: The infant/child’s level of development, his readiness for learning, and the skills he has already achieved.

When the infant/child has had a good sleep, feels emotionally settled, and has had something to eat and drink, he is ready to discover and recognize responses from his movements or to learn anything that matches his level of development. However, he needs appropriate stimulating surroundings (including toys and other materials) and he needs sufficient time for doing as well as for thinking. Also, at the right time, he needs appropriate interest from his caregivers and teachers if he is to have optimal conditions for learning according to his potential.

The quality of the environment from which the child is given opportunity to learn

The environment that is established for the child should include opportunity for him to utilize already achieved motor ability. It should also arouse his interest and curiosity and give him opportunity to achieve the next level of development.

Also, the child should be provided with many environments that will give him opportunity to learn in all areas, such as gross and fine movements, connection between games and daily living activities, communication, cognition, socialization, and independence. In order to devise appropriate environments from which the child will be able to learn, it is necessary to know as much as possible about what the child already is able to do, and in which directions his interest is headed from time to time.

This knowledge can be obtained through observations of the child and interviews with his caregivers and teachers. Interviews should be conducted through the use of The Functional & Instructional Scheme (Nielsen, 1990) or by use of any other appropriate checklist concerning performance during early childhood.

It may also be useful to use the sequences of learning for sighted children as a guide for the purpose of discovering when the blind child has difficulties, and so be better able to facilitate his learning—maybe by means of environmental intervention.

The adult’s cooperation and attitude is crucial in upholding the approach of Active Learning. Environmental intervention means that the adult establishes environments appropriate for the child’s learning, makes objects available for him, and reacts to his signals or vocalization by sharing his interests and by interacting with him at the child’s level of development. For the purpose of introducing the approach of Active Learning it is necessary for the adult to know in detail the learning sequences which enable any infant and child to achieve skills.

Lilli Nielsen’s Publications

Vision Associates

2109 US Highway 90, West Suite 170 #312

Lake City, Florida 32055

(407) 352-1200

Fax (386) 752-7839

www.visionkits.com

Early Learning—Step by Step

#LN-EL, $35

Parents, teachers, and folks who care for handicapped children will learn how children achieve readiness skills for learning and how environmental intervention can facilitate learning through “active learning.”

The Functional Scheme: Function Skills Assessment

#LN-FS, $70

This assessment is used with learners between birth and 48 months to determine their developmental levels and changes in levels. It is a great addition to the FIELA Curriculum.

Spatial Relations in Congenitally Blind Infants

#LN-SR, $24

This study is Lilli’s dissertation and investigates whether a specially designed environment (Little Room) can facilitate development of early spatial relations in congenitally blind babies.

Educational Approaches

#LN-EA, $33

This is a combination of Lilli’s essays and research explaining how she expanded the educational approaches for children and infants with vision impairments.

Are You Blind?

#LN-AY, $35

Addresses children who are autistic and visually impaired. Lilli explains these children are developmentally threatened. Described is an educational method which benefits children’s emotional, motor, communication, and social development.

Space and Self

#LN-SS, $35

Lilli discusses the use of the Little Room to enhance development of sensory integration, object conceptualization, self-identification, and early spatial relations in children with visual impairments.

The Comprehending Hand

#LN-CH, $18

The ability to grasp is fundamentally important to blind children to get into contact with their surroundings and enhance development of all senses. Gives practical hints on how to adapt materials and surroundings to stimulate and encourage development in blind children.

FIELA Instructional Manual

#LNMAN, $50

This guide is for parents, professionals, and staff responsible for establishing optimal learning conditions for children at the developmental levels of 1 to 42 months. See Web site for information about the complete FIELA Curriculum kit.

Visual Impairment—Understanding the Needs of Young Children

#LN-POEL, $33

Dr. J. van der Poel wrote this as a guide to assist in the interdisciplinary partnership to promote early development in children with visual impairments. The information is important for educational planning.

Early Learning--Step By Step

A Review

by Lis Grundy

Anyone who has attended a Lilli Nielsen lecture will know, from watching her mimic the antics of toddlers, that she has a great insight into the learning processes of the

“normal child.” This, coupled with an extraordinary empathy for the needs of visually impaired children, forms the basis of her book: Early Learning—Step by Step.

In it she explores the concept of Active Learning and how, by examining and

exploring the world about them, children are able to acquire new skills that are meaningful to them and will therefore be used by them to fulfill their own needs and also their interactions with others. Children learn by “selecting.” This is precisely what I see them doing when they are learning to grasp, to experiment with balance games, to play sequence games, and so on.  Children can only select if they have something to select from—something to compare.

To all those who have read Lilli’s books this may all sound rather familiar but, as the title suggests, this one heralds a welcome progression of her work with the Little Room by suggesting how environmental intervention can be used in the world beyond.

She begins by looking at normal motor development before and after birth. She then goes on to relate this to those children with a visual impairment and/or multiple disabilities and suggests how missed developmental stages hinder the child’s progression and therefore further development.

Lilli gives many suggestions on how to encourage a child to explore and to move and therefore to experience those lost stages that are the prerequisites for progress toward the next skill. For those children with little signs of mobility she describes how kinematics, or unintentional movements, can be harnessed to produce those that are intentional and therefore meaningful. And for those children who are more able she suggests ways of encouraging independent sitting, crawling, walking, and dressing.

It is interesting that nowhere in the book does Lilli explore the use of high tech equipment. Instead, she constantly introduces the tools which are her stock in trade—ordinary spoons, cups, plates, brushes, buckets, etc.—all of which can facilitate learning whilst enabling a visually impaired child to make sense of the world in which they live.

This is particularly so with feeding and Lilli devotes two chapters to this topic— “Learning How To Chew” and “Learning How To Eat.” Again she suggests activities for a great range of abilities—including marbles in the mouth for the more able pupil, definitely not for the faint-hearted tutor!

In the chapter that is given over to “Toys & Materials,” Lilli describes specific pieces of equipment that were developed in unison with the Active Learning Approach. These include the Essef Board, the Support Bench, and the Net Hammock ‘Poten’ all of which were designed to encourage movement. Throughout the book there is a great deal of useful material that describes their functions and ways of using them.

To conclude, rather than examining toys and methods in detail, Lilli looks at learning to play constructively as she outlines the developmental steps and looks at the significance of the sequence of learning required to manipulate toys and to play games.

This book stands alone as a source of information and suggestions for those who are new to caring for, and to teaching, those children with multiple disabilities and/or a vision impairment. It would, however, be enhanced by having first read Lilli’s other work. For those who are already in the field this is the practical book that follows the theory.

Reprinted from the July 1994 Information Exchange, a publication of the Royal National Institute for the Blind (RNIB), England.

[PHOTO/CAPTION: This blind youngster prepares a garden bed for planting vegetables.]

Chore Wars

Researcher Finds that Involving Young

Children in Household Chores Pays off Later

by Liz Wolf

All parents want their children to be self-reliant and responsible as they grow into young adults. New research shows it can be as simple as having them set the table, help with laundry, pick up their toys, and take out the garbage.

Research by Marty Rossmann, associate professor of family education at the

University of Minnesota, indicates that parents can have a major impact on their children’s future by encouraging them to help with tasks around the house.

Rossmann found that having children take an active role in the household, starting at age three or four influenced their ability to become well-adjusted young adults. “This is cool stuff,” says Kris Loubert, a parent educator at the Early Childhood Family Education (ECFE) program for Minneapolis schools. Loubert has used Rossmann’s research in her teaching. “It seems there’s payoff to having children help out, beyond learning how to keep a home in order. Marty’s research shows that it contributes to their success, and all parents want their children to be successful as they grow into young adults.”

In her research, Rossmann used previously unexplored data collected by Diana Baumrind, a well-known researcher on parenting styles. Baumrind began her study in 1967 using a sample of families living in the San Francisco area. Rossmann’s own family had been part of that study. Baumrind collected the data over twenty-five years.

“She gathered a great deal of data that she didn’t use, and I saw the possibility of doing secondary analysis of it,” Rossmann says. “I looked at it and saw an enormous amount related to children’s involvement in household tasks.” Rossmann analyzed the outcomes for 84 young adults based on their parents’ style of interacting, their participation in family tasks at three periods of their lives—ages 3 to 4, 9 to 10 and 15 to 16—and brief phone interviews when they were in their mid-twenties.

She analyzed variables—including parenting styles, gender, types of household tasks, time spent on tasks, and attitudes and motivators associated with doing the tasks—to determine their impact on the children. She then measured each individual’s “successes.” “I looked at the outcomes when they were in their mid-twenties, focusing on what they were doing in regards to completing their education or being on a path to complete their education, getting started on some type of career path, their relationships with family and friends, and whether or not they were using drugs,” Rossmann explains. She also considered IQ’s when doing her analysis.

After examining these issues and studying all of the possibilities that could influence the outcomes, Rossmann’s research indicates that the best predictor for young adults’ success in their mid-twenties is that they participated in household tasks at age three or four.

“Being involved in household tasks at a young age is what made the difference for a positive outcome,” Rossmann says. “Through participating in household tasks, parents are teaching children responsibility, how to contribute to family life, a sense of empathy, and how to take care of themselves.”

Common wisdom holds that IQ and motivation have a strong bearing on success, but she found that these don’t matter as much as participating in household tasks. Even Rossmann was surprised at the results. “I didn’t expect the outcome,” she says. “I analyzed it and re-analyzed it. It seems like such a simple area, but it’s a huge area.”

However, Rossmann warns, don’t wait too long to get children involved around the house. “The key is to start early,” she says. “If you don’t, it backfires. The study showed that when a parent started their children in tasks at ages 9 to 10, or worse, 15 to 16, the children thought that the parent was asking them to do something they didn’t want to do. They didn’t get the concept of ‘we’re all in this together.’ They were far too self-centered.” The earlier parents encourage their children to take an active role in the household, the easier it will be to get them involved as teenagers, Rossmann concludes.

“Marty’s research is an incentive for parents to get their children involved at an early age,” ECFE’s Loubert says. “Now, there’s compelling reason to have children help out.” For very young children, Rossmann advises that parents keep tasks simple, model how to do the tasks, work with them and offer lots of encouragement. As children grow older, pay attention to their learning styles. “Some children need to be shown several times. Some you can show once, and they pick it up. Some children need to be told in words. Some need to have it written out,” she says. For example, a parent might write out what needs to be done to take care of a pet. “There is no way to say, ‘You have to do it this way.’”

Of course, it takes discipline on the parents’ part to involve children in daily chores. The number one reason parents give for not having their children help out is that it is easier to do it themselves. “One parent said, ‘I know my son likes to vacuum, but he rides on it and it takes longer,’” Rossmann says.

Rossmann does not believe in giving allowances for doing household chores. “For me, allowances are important, but they should be separate from household tasks,” she says. “Allowances help children manage money at a young age and learn the values connected with money, but it should not be attached to household chores. Learning about money and the value connected with money is far too important a lesson to attach it to household tasks. And household tasks are far too important to be put in a situation where you take away money as a punishment.”

The best rewards are love and affection, she says. “Give lots of encouragement for the little jobs your children do—bringing the dishes to the sink, picking up their toys.” As for other rewards, Rossmann says putting little stars on a chart for tasks completed is fine. “They are tangible reminders that we all helped out,” she says. “But Dad gets a star, too, for taking out the garbage.”

Rossmann hopes to replicate this initial study with a larger sample of the population and include families that represent greater diversity.

Jean Illsley Clarke, an author and director of J.I. Consultants in Plymouth, is using Rossmann’s research in her soon-to-be-published book on overindulgence, Indulge Them Less, Enjoy Them More: Finding a Balance Between Giving More and Saying No to Your Children. In her own research, Clarke found that adults who said they were overindulged as children cited not having to do household chores as the reason why. By not being expected to contribute to the family by doing household tasks, these adults missed out on learning basic skills, which caused distress and embarrassment.

“We conducted in-depth interviews with adults who said they were overindulged as children, and there were several big surprises for us,” Clarke says. “People’s impression of overindulgence is being given too many toys, but we found that the major way people said they were overindulged was not having to do chores. One person told us she went to college without ever having learned to do the laundry. She asked her roommate, ‘Which is the washer and which is the dryer?’ She was absolutely ridiculed and never asked any more questions, so she stumbled along.”

Parents who don’t ask children do chores may have good intentions, but the impact is negative, Clarke says. For example, a working mother rushes to get dinner on the table so she can spend “quality” time with her child, playing or reading. Allowing her child to help with dinner would slow her down.

This, in fact, is what the child needs, Clarke says. The child connects with her mother one way when playing, but she connects in another way when helping to prepare dinner. “She feels like a contributing member,” Clarke says, and the mother “anchors” that feeling with her praise and encouragement. Rossmann’s research offers important information on the role of chores, Clarke says. “We’re coming at it from two different directions, but coming up with the same picture,” she says. “Marty observed that those who did chores are competent, and we listened to people complain that because they didn’t do chores, they are not competent.”

Reprinted with permission of the author from the March 2003 issue of Minnesota Parent.  Liz Wolf is an Eagan-based freelance journalist.

[PHOTO/CAPTION: Dr. Ruby Ryles]

[PHOTO/CAPTION: These children, both blind and sighted, play in an age-appropriate manner in this child-care setting.]

Is Your Child Age-Appropriate?

by Ruby Ryles, Ph.D.

Dr. Ruby Ryles is the mother of a blind son and also a distinguished expert in the education of blind children. The following is a presentation she made to the Parents of Blind Children Seminar at the 1992 National Federation of the Blind Annual Convention:

I am a professional in the education of blind children. I’ve been the Arkansas State Vision Consultant, coordinating and developing state-wide programs for blind and visually impaired children. My staff and I worked out of the Arkansas School for the Blind in conjunction with the State Department of Education of Arkansas. I spent a number of years as an itinerant teacher for the blind in Anchorage, Alaska.

Recently I developed and currently supervise a program for blind and visually impaired children in the Bellingham, Washington, School District. I also do private contracting with various school districts in Northwest Washington to assist in meeting the needs of their visually impaired student populations. I have a bachelor’s, a master’s, a year and a half of post-master’s study; and I am currently a full-time Ph.D. student at the University of Washington in the area of special education, doing educational research on the blind. Are you impressed? Could I intimidate you at an IEP meeting? I certainly must qualify as a major-league expert regarding your blind child; don’t you agree? As the kids would say, “Not!” Or, more correctly stated, “Wrong!” Well, if a hot-dog professional, who has read a ton of textbooks and taken and taught innumerable classes isn’t the authority on your blind child’s abilities and potentials, just who is? You are, my friends. You may not know or use the jargon of the professionals, but you truly do have the expertise regarding your child. Some of you parents do not quite believe me, do you?

Well, let me run over your areas of expertise, using the special education terminology of the day. When your blind baby began saying, “Bye bye,” did you teach her to say, “Bye bye, Dada”? If so, then you assessed her proximal zone of linguistic development, scaffolded, and became her first communication development specialist. Did you hold on to your year-old baby’s fingers and walk and walk and walk barefoot across the living room rug to encourage him to walk alone? Then you probably blatantly defied the Domon-Delacoto theory and became your child’s initial peripatologist. Did you wrestle with your child on the bed, stack blocks, roll balls, play on the slides and swings, and guide your child as he or she put on socks and zipped a coat or loosened a lid on a jar? Then you’re as accomplished in small and gross motoric guidance and ADL skills as any occupational or physical therapist I’ve worked with.

Do you remember the time you used a stern, disapproving voice and sat your child in a chair for ten minutes to settle him down or sent him to his room because he sassed his grandmother or tore the arm off his sister’s Barbie doll or pitched a fit at Safeway?

Did you know that you were assessing his current level of behavioral, social, and emotional functioning and applying behavior modification techniques to ensure the appropriate attitudinal adjustment of a non-compliant, temporarily behaviorally-disordered child? I don’t know about you, my friends, but my own service delivery model of behavior modification when my blind son Dan was little was expedient, efficient, and measurable, especially when it was administered to the seat of his pants.

Parents are cognition and behavior specialists long before any psychologist ever puts our blind child’s name on paper work or assigns him a score on any test. You are the expert.

You don’t use the jargon, and my apologies for the pompous introduction. My point is not to be silly, but to stress the fact that education, specifically special education, is glued together with jargon. I really think that special education would come apart at the seams if we didn’t use jargon, especially if professionals had to say in real language who they are and what they do. Don’t be too impressed or intimidated by titles and degrees or jargon in special education because there is no one and no test ever devised that knows your child as well as you do. Believe in your child’s abilities. If you don’t, there is no one who will. Any professional who makes you feel less knowledgeable about your child is poorly trained, insecure, arrogant, or all of the above.

We’ve established the point now that you’re an expert in your child’s behavioral, emotional, physical, and social development. Well, how about academics? You heard Fred Schroeder speak about this earlier today. Are you just going to have to trust that the special education department in your school district will do the right thing? No. Listen up because after the next few minutes you as a parent will be able to assess your child’s academic progress and design a program that will take him through his public school years. Pay close attention now, because this information draws the line between a real expert on blind children and someone with only degrees and titles and pompous introductions to recommend him or her. There are only two words. Write them down on a scratch pad or a piece of scrap paper, but I want you to carry them in your heart for the rest of your son’s or daughter’s childhood-age appropriate. That’s it, and it’s a hundred percent, guaranteed, fool-proof, sure-fire, can’t-be-denied secret. The majority of professionals in our field don’t know it or practice it or, sadly enough, believe it. But you now know the secret of success for your blind child; and I want you to feel it and live it.

Let’s talk about these two empowering words. Very simply, “age-appropriate” just means that your child is doing the things at the same age as he or she would have done them as a sighted child. For instance, what is a six- or seven-month-old child doing? Sitting up. That’s one thing. Okay, there is no reason at all that a blind child shouldn’t be sitting up at six months. At twelve months, what’s the age-appropriate thing a child should be doing? One thing is walking. There is no reason not to expect it, even though we are told quite often by mobility instructors that blind kids don’t walk until twenty-four months. In my own experience that’s just not so—I do have a number of years of experience with blind kids and have raised a blind son. He walked at twelve months. A number of times I have had people point to research that blind kids don’t walk until twenty-four months. Well then, how do we explain all the kids that do walk earlier?

At two-and-a-half-years-old, sighted babies are into everything. Our blind infants ought to be into everything too. If they are not, you need to teach them. Teach them to get into the cabinets and what fun it is to find the pots and pans and to bang them together and make noise that will drive you crazy: all of the things that we say, “No, no, no” about to a two-and-a-half-year-old. If somebody tells you that your two-and-a-half-year-old is such a good baby, you better get scared, because your baby is not age-appropriate. If he is not age-appropriate at two and a half, then when is he going to be? When is he going to find the pots and pans and get into them? When he is twelve? That is not age-appropriate.

Behavior—I often find that I can tell as much about kids by their misbehavior as I can by their behavior. I think it was a real good lesson to me as a mom to watch my own son’s misbehavior at age-appropriate levels. I had a student one time who was a third grader and I suppose is now a tenth grader. Kids in Alaska keep their boots in the closet, and they put on tennis shoes when they come to school. At the end of the day you change back into your snow boots. He was looking around for his snow boots, and somebody stepped on his hand. That was not pleasant, and he turned around and bit the kid. When I came in the next day, there was a big hullabaloo about this. I said, “Randy, you are in big-time trouble with the school for biting. If youare going to get in trouble for misbehaving, I would prefer to see you do it like an eight-year-old rather than a three-year-old. The next time somebody steps on your hand in the closet and you get angry about it, haul off and slug him; don’t bite him.” That’s age-appropriate for an eight-year-old. My point is that, if Randy was going to get into trouble, how much more appropriate to do it as an eight-year-old.

I have a sadder comment to make on the lack of age-appropriate behavior. I had a student one time—she was probably in the eleventh grade. Somebody in class had called her a name that was none too pleasant, and she responded as an eight-year-old; she hit the girl. Now when I got to this high school, the counselor said that the teachers had already handled the situation. After I sifted through all that was happening, I found out that nobody had done much of anything about it. I asked, “Wait, why has no one done anything about this misbehavior? What would you do to a sighted eleventh-grader who hit somebody in the mouth?

“We would expel her.”

She was never expelled; she was never even disciplined. Two years later, as she was transitioning into a job with the Anchorage Power and Light Company, she slammed a door on her supervisor’s hand, not by accident, but out of anger, acting more like an eight-year-old than an eighteen-year-old. Obviously, Anchorage Power and Light was not real interested in retaining her services.

Age-appropriate behavior—it’s very important. If the child is not appropriate at eight years old, when is he going to be an eight-year-old? When he is eighteen?

Language—one thing that needs to be understood is that blindness is in no way a cognitive handicap; it’s just not. There is no earthly reason why our kids should not be on level developmentally. The only thing that holds them back in all these areas, whether it is language, behavior, academics, or anything else, is our own expectations—our own as parents and as professionals.

I ran across some interesting research recently. Unfortunately it was done outside the United States. Much of our research is rather negative. Fortunately, if you go to other countries to look for research, there is much better data on blind kids. One of the articles I looked at was talking about language and blind kids. The sample they studied indicated that blind kids’ language acquisition and development were right on target with that of sighted kids, whereas the research in the United States says no such thing. I thought that was rather interesting.

In my own experience I find that blind kids whose parents work with them show no difference in language acquisition from sighted kids. Echolalia is a term often used by professionals to describe blind infants. It’s parroting. If you say to your child, “Jennifer, do you want a cookie?” and Jennifer says, “Jennifer, do you want a cookie?” but she means, “I want a cookie,” there is nothing abnormal about that. All normally developing kids (sighted or blind) go through an echolalic period. You don’t need a speech or language therapist; all you do is model to the child the answer that you want her to give you. Quickly Jennifer will pick it up. Instead of saying, “Jennifer, do you want a cookie?” when she wants a cookie, she will say “Yes” or “Yes, please” or whatever it is in your family—not hard.

Dressing—at twelve-years-old one of my students was not washing or combing his own hair and was not clipping his nails. Again, if he doesn’t do it at twelve, at what age? How inappropriate that at sixteen, he is just beginning to learn to wash his own hair.  If as a parent you’re not sure what is age appropriate, in other words, if you have a six-year-old and you’re not sure what a six-year-old does because it’s your only child, take a look around the neighborhood or at church. Look at other six-year-olds, and see what they are doing. There have to be other six-year-olds in your family. As a last resort go out and buy a book: Dr. Spock. Don’t buy a book on blindness; buy one on standard development in children.

Eating skills—we can run the whole gamut with this one. But there is no reason in any area that your child shouldn’t be doing what she would if she were sighted. A lot of people get very poor advice from professionals about such things as saving a fork until the child is five or six years old. But this means that by the time he gets to school he has had very little experience in using a fork; and, believe me, the rest of the kids in that cafeteria will pick up real quickly that your child is the only one consistently bringing a sack lunch with finger foods, that he doesn’t ever get a hot lunch where he has to use a fork and a spoon and a knife. If you don’t think that doesn’t isolate your child, you are wrong. It does.

Is your child limited in getting around in any way? For instance, mobility? This organization was at the leading edge in insisting on mobility for preschool kids and using canes. I can remember very vividly, five or six years ago, this organization was already fighting very hard to get the word out that young children need canes so they can learn what they need to know early. The blindness field was saying, “No, we need to give them canes for a thirty-minute mobility lesson at school and then take them away.” You can equate that with giving a pencil to a three-year-old sighted child. Would you deny pre-schoolers pencils until they get to school and then hand them out for thirty minutes at a writing lesson? How good do you think they are going to be at handwriting if that’s the only experience they have with a pencil? And a sighted person uses a pencil far less than the blind child uses the cane.

Role models—in our family and with the kids that I teach, we have a cardinal rule that, if you don’t know how to do something, don’t go ask the professionals. You ask the real expert-the blind person who is doing it. For instance, I had a tenth- or eleventh-grade blind kid in Anchorage. He wanted to take a class on small engines, working on airplane engines. I know absolutely nothing about that. When I was in school as a girl, shop was for boys. So the first time I stepped into a shop class, I felt like I was in a locker room or something. I had no idea how Joe was going to take this class—I didn’t know the names of the tools. I had no idea how they could be adapted. It would have been foolish for me to dream up some way for him to adapt these things. So I called the fellow who was President of the National Federation of the Blind, and I said, “Do you know a blind mechanic?” I didn’t even call the guy myself. The President gave me the number, and the school district paid for the call so Joe could make the call. And the result was that Joe took the class without much help from me. He didn’t need it anymore, because he had the real expertise he needed. He had learned from the blind mechanic about the set of tools he needed. We then got together with the Lions Club and bought it.

When my son was eleven or twelve, he wanted to do a paper route. Despite all of my professional expertise and wisdom, I had no idea how he could do one. At the time Jim Gashel was in our city. It really took a lot of courage on my part as a parent, but I swallowed my pride, went up to him, and said, “Mr. Gashel, I understand that you had a paper route when you were a boy, and I want to know how you did it. My son wants to have a paper route. Did you go on your mother’s arm?” (I thought he was going to gag on that idea.) He said, “Well, no, but I don’t remember how I did it. Does your son know how to use landmarks with his cane?”

“I don’t know.” He asked, “How does he get home from school?”

“He gets off the bus and walks about a block and a half to the house.”

He said, “Then he has to be able to use landmarks.” I still can’t tell you how Dan did that paper route. This was in Alaska with snow up to your knees. We just started out one morning as you would with a sighted child. I had the route list. If you have ever had a sighted kid with a paper route, you know that as a mom you normally begin the route with the kid. You say, “Okay, 2113, that’s the brown house on the right over there. Let’s see, 2115, that’s the house next to it. 2116, oh, that’s across the street. And normally you go over the list with the kid for a few days. You know, that’s all I did with Dan, and within six or seven days he was doing it alone. However he figured it out with his cane, he was doing the route on his own.

That is the way he has always made his spending money. He delivers papers for the Seattle Times still. He handles his own records. We never have to do anything to help him. In fact, he’s had to train two substitutes to take his route so that he could be here at the convention. We went to the Federation; we went to the real experts. The people that I work with professionally were kind of upset that we didn’t make mobility lessons out of learning how to do a paper route. But look at the message that would have given Dan:

You have to have a series of lessons in being normal.

When he was in the tenth grade, Dan wanted to be in the marching band at school. Again I had no idea how to help. This is a good marching band. Our high school has won state awards, and they are not about to let anybody in who will mess up their precision drills. I had no idea how he could do it, because he uses his cane all the time, and you can’t use the cane during drills. Before I could think of contriving some kind of an adaptation, Dan got on the phone, called the National Center for the Blind, and said, “Let me speak to anybody who’s blind and who has been in a marching band.” He happened to get hooked up with Pat Maurer. The next thing I knew—and I didn’t have anything to do with this at all—he talked to the band director, and the two of them worked it out to the point where the last time I went to one of his football games where the band was marching at half time, I videotaped it. When I got home, I was informed that the kid that I had the camera on was not even Dan. You couldn’t find him. Dan was very pleased with that because he didn’t stand out, and I was irritated because I wanted a tape of his marching.

Staying on the topic of school—kindergarten. You need to learn about the kindergarten curriculum. They’re called specific learning objectives (SLO’s), and every school district has them for each grade. These are the things that we expect the kids to know when they come out of each grade. Kindergarten is pretty basic, pretty easy. Children need to know the alphabet. Your child needs to know it in Braille; that’s all there is to it. Numbers, children need to be able to count. Normally in kindergarten they are supposed to be able to count at least to a hundred. Your child needs to be able to do it too. You should be able to demand it; you must demand it from your school district. I don’t care how it’s done, whether they use Mangold, whether they do it with Patterns.

Because I taught first grade for about nine years before I got into this field, I like to use basal readers. I take a basal reader and adapt my own method. It doesn’t matter how it’s done, as long as the child is on level from kindergarten through high school. In kindergarten the kids need to know colors. Blind kids need to know colors too. Totally blind children need to know dogs are not blue, hair is not green unless someone’s making a statement.

Animals—how inappropriate for a fourteen-year-old not to know about animals!

It’s very embarrassing for students at fourteen and fifteen and sixteen. Sometimes, after they begin to feel comfortable with me, my students say things that let me know that they have no concept of a bird, different wingspans, a bird’s feet. We talk about animals’ feet. We look at the difference between a cat’s feet, goat’s feet, bird’s feet, cow’s feet. How about tails on animals? Will your child ever have a good concept of a giraffe? You say, “Oh my, of course not.” Well sure he will if you describe it by analogy. He’s got to know something about what a giraffe’s feet are like. Are they more like a goat’s, a cow’s, or a horse’s feet? But first he’s got to have a good concept of the animals that you can let him have hands-on experiences with. Do this at an age-appropriate time—three-, four-, and five-years-old—so that you can talk to him about animals. A giraffe has a tail that’s much like a cow’s tail, but how will he know if he doesn’t know what a cow’s tail is like, if you have not taken him to a fair?

We are city people, so when a fair came around, I used to grab the opportunity. If you go into the animal barns, the people always want to let your kid pet the animals. That’s not going to give the child much of a concept of what that animal is like. I always say we need to get into the animal. I take the child’s hands and together we feel the back leg of a dog or a cat or a cow to know what the animal’s legs are like and how they differ from the front legs and how the legs bend. So when I talk about the legs on a giraffe, the child will have a concept of that. But it is much harder to do this when the child is twelve than it is when he is five.

Remember, when your child is in first grade (Fred Schroeder mentioned this earlier, and it can’t be emphasized too much), your child is not learning Braille; your child is learning to read in Braille. It boils down to this: when your child is leaving first grade, he needs to be reading at a beginning second grade reading level, or he is behind. It is like dominoes. He’s behind in first grade. That throws second grade behind. He’s behind in second grade, and that gap gets wider and wider and wider. Don’t kid yourself: your child is not going to catch up. You need to be sure now that your child is on level in first grade.

At three-years-old every child should be using a spoon; don’t wait until your child is six. Don’t let somebody tell you that it’s normal for a blind child not to do something until later. That’s not so! Beware of the word “realistic.” Anybody that tells you to be realistic about your child, you know what that really means? Lower your expectations. It means don’t expect so much, accept less. That’s what it means, and you should get your back up.

Second grade is the time for teaching keyboarding—I don’t like that term; it’s still typing to me. A child needs to learn to type. All vision-impaired kids (low-vision and Braille-reading kids) need to learn to type because they are going to be communicating with print-reading teachers.

I’ve been criticized sometimes for waiting too long, but third grade is normally the grade that I introduce slate and stylus. I would wait no longer than that. Writing with the slate and stylus is one of the easiest things under the sun to introduce to a child. I wait till third grade simply because by this time normally they’ve got a pretty good grasp of Braille, and it takes about six weeks from introduction to the time when they’re just about fast enough to keep up with the spelling tests. I like to say, “Okay, spelling is the first subject in which we are going to use the slate and stylus. You are expected to do your spelling totally with slate and stylus.” I have to prime the teacher first to let her know that she is not to slow down in dictating the Wednesday preliminary spelling test for this child. He may be used to making A’s in spelling. He may make an F or so in spelling because he is not keeping up, but the teacher is not to slow down. There is nothing that will make that child speed up faster than a poor grade on his spelling test because he couldn’t keep up. As a parent you need to get onto your child at home and say, “Hey, what happened to this spelling?” even though you know. If you accept the low score on the grounds that, well he was using the slate and stylus, so he’s going to be a little slower at this, what message does that send to your child? It’s okay if I’m not up to snuff in writing and spelling.

I would say, be very wary of putting an aide in a classroom with your child because an aide takes away independence. Think about it. If you’ve got an aide in the classroom with your child, at what point are you going to say, “Okay, no more aides in that classroom?” At sixth grade, fifth grade, when? Are you planning for it now? If your child has an aide in kindergarten or first grade, are you planning that next year we are going to say, no aide: she is going to do it on her own.

Dan hasn’t even had an IEP since he was in seventh grade. He graduated from high school two weeks ago today. It has not been real easy along the way. The hardest thing I think has been for me to sit on my hands and not go to that school and wring some people’s necks. I had to teach Dan to do his own advocating with the teachers. The science teacher, for instance, gave Dan a C, and in looking at the final report I noticed that they had included a computer printout record of the stuff the kids had done. Dan had done twenty-five percent of what the rest of the kids had done that quarter. I said, “Dan, do you realize you’ve done twenty-five percent, and the teacher is giving you a C? The teacher had written at the bottom that it was too visual. They had been doing a unit on astronomy, and they were computing distances between stars and that sort of stuff. It was beyond me, to be honest with you.

Anyway, I impressed on Dan that next year builds on this. You have twenty-five percent of the knowledge out of this science class that you are going to need for next year. Are you really satisfied with that? He went back to the teacher and said he wanted the extra work. He wanted the seventy-five percent that he had missed. He got it; he also got a lower grade on his behavior. I think his teacher thought he was a smart aleck, coming back and asking for the extra work. But he did the work and it taught him a lesson: he should not be letting his teacher make these decisions for him.

Often our kids have assignments cut for them. We are told that they work too slowly, for instance. It takes so much longer for them to get the assignment done. But what does this say to our kids? For one thing, they are being permissioned out of an education. Many times especially kids who are partially sighted and who don’t know Braille are excused right into incompetence. If your child is partially sighted, there is no getting around it: he needs to learn Braille, which he can learn along with print. I would not advocate that he read only Braille, but he needs to learn to use print when it is efficient and Braille when it is efficient. It is far, far easier for your child to be taught Braille when he is six rather than twelve, because once kids get to about third grade, they are going to fight anything that is different. It is normal that they do. But I don’t think that I have ever had a child, partially sighted or blind, below the third grade level who has ever resisted learning Braille.

Extra time—often our kids are given extended time limits, and the only reason they have extra time, whether they’re Braille or low vision kids who haven’t learned Braille, is that we haven’t expected enough of them.

If they are low vision and they need extra time, they need Braille. If they are Braille kids and they need extra time, they’re not reading fast enough. That’s all there is to it. And we need to step up their Braille reading instruction to be sure that they learn to read fast enough. There is no reason for our kids to need extra time.

Extra time in getting to class, extra time in getting to lunch—this should not be happening. As Fred said earlier about the kids who left five minutes early to get to the swings at recess, the message that policy sends to the child is very harmful.

How do you know if your child will benefit from reading Braille? If your child has low vision, there are some red flags that you can think about. If your child has low vision, does he enjoy reading? Does he pick up a library book and read it for pleasure?

Normally not—low-vision kids avoid reading. As a partially sighted adult once said to me, “Reading print is just not pleasurable.” There is no such thing as pleasure reading for these kids. Does your child use tapes a lot because print is so tiring? Does he need to have someone read the printed material to him? Your child is not going to learn reading skills if he doesn’t read. He has to read a large amount of material. Somewhere, in some of the readings that I have done in the last year or so, I have read that the average fifth-grade child runs across a million words a year. Do you think your partially sighted child using tapes is going to see that number? To be able to be literate, our children must physically read the same amount of material as sighted kids. For instance, is your partially-sighted child spelling as well as she should be? How is her reading speed? If it is not up to snuff, you need to be looking at Braille.

Does a child use tapes for book reports? Teachers assign book reports because they want the child to have the experience of reading books, and tapes don’t provide the full experience. Kids can’t learn to spell words off tapes. For instance, one of the students I had recently was a junior in high school, and she had just learned Braille. She was reading and saw a phrase in the text. She said, “This morning—I didn’t know that was two words.” If you get your information from tapes, there is no way that you could catch such a simple thing as that, let alone being able to spell a word like “Chicago.” There is no way unless you have read the word “Chicago” enough times that you would know that it is not spelled with a “S-h-i-k.” Be sure that your child is reading a lot.

Written expression is another big red flag with partially-sighted kids. Punctuation, paragraphing, syntax: all suffer greatly if the child doesn’t read. Kids who don’t read can’t write. Braille is the answer.

Handwriting—can your child read his own handwriting after it gets cold? For instance, after a couple of weeks could you pull out notes from your partially sighted seventh-grader’s notebook and say, “Read this back to me.” If he can’t read it, seriously consider Braille, because your child could benefit from learning it.

When I am called to assess a child in junior high, I know what I am going to find. The school personnel will say they want me to come look at a child that is visually impaired. Probably the student is in a resource room, some kind of a self-contained setting for at least one period a day. An aide or someone else is helping the child, more or less pulling her through assignments—reading the material, helping with spelling. These kids are not getting through school on their own. They are not getting the literacy skills that they need at all. Most of them are permissioned out of a lot of basic courses, such as foreign language, geometry, and higher math, because teachers believe these courses are too visual for kids with limited sight. Braille kids aren’t denied such opportunities. For instance, last year my son Dan took trigonometry and chemistry. He needed no aides to take these classes. It’s not that Dan or my other students are brilliant.

It’s just that they learned Braille from early on, and they took it for granted that they were expected to do higher math. They were expected to take trigonometry and geometry and two years of Spanish or French or German. Good Braille readers can do that. Those who struggle through with print can’t. Such students are not normally good enough readers to handle complex material.

I lost my glasses earlier this week, and with my university courses, I’ve got to do a lot of reading. I got migraine headaches Monday and Tuesday. I’m taking a statistics class right now, and the eye strain gave me migraine headaches. I finally told my husband I couldn’t go on. I was either going to have to start using Braille or go get some glasses. That experience gave me real empathy with a lot of the kids I have taught and am thankful for, the low-vision kids to whom I have taught Braille. Reading print is just not pleasurable for them, and they don’t do enough of it to be very literate. Your kids won’t be either, if they are partially sighted. Teach them Braille.

One definition of literacy is the ability to read and write at grade level. If your child is a Braille reader and she is in third grade and you don’t know whether she is reading on level, how do you tell? Ask to borrow a third-grade textbook in your child’s class. If it’s not in Braille, there is somebody in your community who knows Braille well enough to Braille a story in the middle.

Hand it to your child and listen to how she reads. See if she is fluent with it. If she is, ask her some questions about what she has just read. How is her comprehension? You can tell whether she is stumbling all over herself in answering your questions. If she has no idea what she has read, she is not on grade level. I don’t care what that IEP says, what the assessment says; you do your own assessment of your child. It’s not that hard.

I will finish by saying that in the Federation we believe that blindness can be reduced to the level of a nuisance if you’ve got the skills and opportunity. Can blindness really be reduced to the level of a nuisance? You bet it can, but only if your kid has good skills, a positive attitude about blindness, and a chance. One day soon, parents, you will find yourself in my shoes. Your child will be taller than you are, standing on the threshold of adulthood. I’ll tell you from experience, it will be here in the blink of an eye. It seems

like yesterday that Dan was a little one in my arms, and he is starting at Washington State University this fall. I can’t believe the time is here. Time is a vindictive, relentless thief, and the cruelest theft of all is the theft of our kids’ confidence in themselves. Don’t let another day go by before you see that your child has the skills to ensure that he can become a confident, independent adult. You do that by seeing that he is a confident, independent child. See that he’s age-appropriate in every way.

[PHOTO/CAPTION: Barbara Cheadle and son, Chaz, enjoy a break during an NFB Convention.]

Advice to Parents of Partially Sighted Children

by Barbara Cheadle

The following open letter was written several years ago in response to the many parents who have asked my advice about raising their partially sighted youngsters. I reviewed the letter for reprinting with the idea that I might need to make some changes. After all, my son, Chaz, is now a young adult. I was pleased to find that the advice is as sound today as it was when I first wrote it. There are a few things I would like to add to it after going through the teen years, but I’ll save that for another article and another issue. Here’s the letter:

Dear Parent of a Partially Sighted Child:

Here are a few of the many things our family has learned, with the help of the Federation, about raising a blind child with partial vision.

One of the first rules my husband and I decided to follow was never to ask our son, “Do you see ___?” or “Don’t you see ___?” You must remember that very young children have no idea that they see the world differently from others. A child cannot tell you what he or she sees simply because he or she doesn’t have any notion of what you see.

However, what your child will learn from these questions is that you think it is VERY important that he or she be able to see. Soon, wanting to please you, your child will start faking it. Obviously this will defeat your purpose. Neither you nor your child will learn anything constructive through this approach. Pressing your child with constant questions and references to his vision will not make him see any better. What it will do is convince him that there is something shameful and inferior about blindness.

Your expectations of your child should not depend upon her visual acuity. On the other hand, knowledge about her functional vision will help you better understand how she learns. As the parent you will teach your child how to eat, dress herself, talk, clean up her room, ride a bike, and a thousand other skills of everyday living. You need to know what combination of visual and non-visual techniques to use when you teach her. Also, as she gets older, you will need to guide her so she can take on the responsibility of working out her own techniques and knowing when to use which. This knowledge will come with time, observation, experience, reading, and most especially the information and insights gained from associating with competent blind adults.

I cannot emphasize enough the importance of getting to know blind adults. It has been from blind people that my family has learned about good attitudes, effective non-visual techniques, efficient use of functional vision, and what to anticipate year by year as expectations and needs change. But most of all we have learned that the degree of vision is not an important issue. I think people do not believe me when I tell them that most of the time I do not know how much vision, if any, my many blind friends and colleagues have; but it is true. Competence is a matter of good training and positive attitudes, not vision.

Understanding your child’s vision can also help you understand behavior you may have found puzzling. For example, when we adopted our son, we could not figure out why he tilted his head to one side. We fussed about it and tried to make him hold his head straight until we found out that head tilt was common in persons who have nystagmus (uncontrolled movement of the eye), because it helps the person get a better focus on an object and thereby see better. After we learned this, we stopped bothering our son about the tilt. It was not particularly noticeable or objectionable, and other people accepted our explanation readily. On the other hand, we do not allow our son to stick his nose down into his plate so he can see what he is eating. We know there are many good alternative techniques used by the blind which are more socially acceptable than shoveling food into your mouth with your eyes an inch from the plate. He can lightly touch the food with his fingers or fork—a white chicken breast and mound of white mashed potatoes may look alike, but will feel very different under a fork; he can ask what is on the plate; and he can be alert to smells, etc.

The techniques we teach our children should increase their flexibility and independence, not decrease it. For example, I made the mistake of not insisting that Chaz use his finger inside the lip of a cup to determine when a cup was full. He seemed to be able to see it well enough, so I didn’t push the matter. What was actually happening was that Chaz was selecting liquids and containers for contrast (he would never, for example, pour water into a clear glass). This technique worked for a while, but now that he is older it doesn’t work so well. Why? Because he has less control over what he encounters in different environments (school, friends’ homes, restaurants, etc.) and because he is expected to do more—pour water for guests (yes, into clear glasses); measure oil while baking cookies; pour soft drinks from a pitcher at the local Pizza Hut; and so forth.

If your child seems to have trouble finding a dropped object or item that others can see right away, this is the time to develop your own ability to give verbal descriptions and directions. For example, you might say, “The pencil is just under the edge of the table to the left of your foot.” You can also teach your child to use his hands in a sweeping, overlapping pattern over a particular area as he looks for something. Canes are great if the item has dropped under something or is beyond arm’s reach. We have been successful in teaching Chaz this technique. Because he has incorporated the alternative technique as an automatic habit, he wastes less time and gets less frustrated than if he were accustomed to using his vision only.

Teach your child to use tactile clues to verify what he or she can see only imperfectly or perhaps not at all. We discovered when our son was twelve that he thought that the large ears on goats—the kind that stick straight out from the head and are horizontal to the ground—were horns. He has never liked to touch animals, and we have never forced him to do more than give them quick pats. We would never have known of this misperception if he had not asked us why some of the goats had four horns and some had horns but no ears. Although our son could see, he had to guess at just what it was he was seeing. After we realized what had happened, we made him touch the ears and the horns, and we had a discussion about the different shapes and locations of ears and horns on various animals.

When teaching your child to use his hands, you should emphasize developing a light touch. Use all the fingers, not just one fingertip, and touch or search in a systematic way (up, down, left, right, etc.). Let him feel the produce in the supermarket. He won’t, for example, be able to see the bumpy texture of an orange, but he can feel it. These kinds of experience are seldom encouraged for partially sighted children, yet without them they

are left with incomplete and literally fuzzy concepts of the world around them.

Cooking, house-cleaning, and general self-care are all areas where I feel that it is critical for visually impaired children to learn non-visual techniques. It just isn’t safe to put one’s nose down to the knife or to the flame in order to see what you’re doing. It is not safe, nor is it efficient. But good non-visual techniques are safe and efficient.

Talk about blindness. Most blind adults will tell you that their parents never discussed blindness; some parents wouldn’t even use the word blind. This led to a great deal of unnecessary anxiety, fear, and false notions about blindness. So talk. With the child who has partial sight, it is especially important to talk about why people with some vision can be considered blind. In “A Definition of Blindness” Dr. Jernigan explains it this way:

“Anyone with less vision than the legal definition [20/200 visual acuity or a field of less than 20 degrees] will usually (I emphasize the word usually, for such is not always the case) need to devise so many ... alternative techniques as to alter quite substantially his patterns of daily living.” These people are functionally blind. I have found that children, when this is explained in words they can understand, have no trouble with this definition.

There are many ways you can open up discussions of blindness. Read an article from the Braille Monitor or Future Reflections and have the whole family discuss it. Talk about the way blindness is portrayed in jokes, television shows, cartoons, newspaper articles, books (including school textbooks), and so forth. Talk about the public’s reaction to blindness. Why did the man at the fair offer to let your blind child ride free, and why did Dad insist on paying? The conversation may go something like this: “Do you think the man offered to give you a free ride because he felt sorry for you as a blind person? Do you think he should feel sorry for you? No? Neither do we. If we didn’t pay, it would be like saying to this man that it was OK to pity you. Do you suppose this man, feeling the way he does about blind people, would hire a blind person to help run this Merry-Go-Round? Probably not. But, you know, I bet a blind person could work here. How do you suppose you would do it?”

Fortunately, the cartoon “Mr. Magoo” is no longer popular. However, your child is likely at some point to see a cartoon with a similar theme. Be alert, and take advantage of this opportunity to point out the usefulness of non-visual techniques to the partially sighted. You might ask questions like this during your discussion: If someone is partially sighted but uses only sighted techniques, might not he or she sometimes appear helpless and foolish to others? What might have happened if Mr. Magoo had learned to use a white cane, to read Braille, and to employ other alternative techniques?

Help your child understand that the limitations he or she does experience because of visual loss (and yes, there are some) are no more than the limitations that we all have because of various physical characteristics. Some years ago Chaz tried to play badminton with the family in our backyard. It was obvious after a few minutes that there was no way he was going to be able to hit the birdie with a racket. It was simply too small and too fast for him to see. He was quickly frustrated and soon broke into tears. I was upset, too. It hurts to see your child try something and fail. However, I took a deep breath, calmed myself, and sat down to talk with him. I began by pointing out to him that because I was short I couldn’t reach the top cabinets in my kitchen without a stool. Although his Dad could reach those top cabinets in the kitchen because he was taller, he had a hard time, because of his height, folding himself up into the back seat of our Volkswagen. We also talked about how he was a better swimmer than his older brother, who was, on the other hand, a better badminton player. Being blind was, I pointed out, nothing more than a physical characteristic; and, like any physical characteristic, it could therefore be a limitation sometimes. But it was no more than that. Chaz was about six years old at the time, and this discussion laid the groundwork for our approach to blindness in the years to come.

Don’t limit your child. It is challenging sometimes to figure out when something is a limitation because of lack of vision and when in fact an alternative method may be found. However, as long as a parent provides a healthy environment for the child and expects and encourages the child to do things, there is no harm in letting a child dream and fantasize about occupations which you believe really would be unsuitable for the blind. For example, when Chaz was about four years old, he used to talk a lot about driving racecars. My inclination was to set him down and give him the sad facts that he’d never be able to drive. My husband, however, was much wiser. He told me to let him be. He said our son would figure out in his own way and in his own time what he could and could not do. Sure enough, my husband was right. Years later Chaz now talks about being a mechanic.

Help your child to understand the cause of his or her blindness. Blind children should be able to explain to others why their eyes look funny or why they don’t see the way others see. Someday, sooner than you realize, they will have to answer the inevitable questions about their eyes and eyesight, not you. Prepare them so they can do so with confidence and ease.

That’s the easy part. The hard part is talking about the future. How do you tell your child about what is likely to happen to his vision as he gets older? Again, this is a situation where having many good blind role models is essential.

One of our family’s blind role models did not know until he was a college student that his eye condition (Retinitis Pigmentosa or RP) was progressive. His parents had assured him when he was a child, even though they knew the truth, that his eyesight would always stay the same. His parents may have meant well, but in the end the lie caused unnecessary bitterness, anguish, and distrust.

Another blind woman was, as a child, dragged all over the country to see sights “when she could enjoy them.” Not only was she given the false notion that sight was essential for enjoyment of life, but she was at the same time denied the opportunity to learn skills, such as Braille and cane travel, which would have helped her make a smooth transition. Even though she knew the truth about her visual future, her childhood was filled with anxiety and fear because of erroneous and negative attitudes and beliefs about blindness.

When you talk about the future don’t change your expectations just because you know your child’s vision will be less than it is today. Don’t limit your discussions of college or jobs or social activities to things you think blind people can do. Again, this will be much easier if you and your family are personally acquainted with a number of competent blind adults. Also, if you are teaching non-visual techniques to your child all along (even in little ways, such as using touch to find a dropped object), this will make it easier for both of you to anticipate how he or she can continue to function competently and independently as his or her vision decreases.

It is especially important that your child learn Braille and the use of the long white cane. Don’t be put off by those who say that he or she should wait and learn it when he or she needs it. One problem with that approach is that it assumes that those skills are not useful now, and this is usually not the case. A child with RP, for example, will typically experience night blindness while still young. The use of the long white cane can provide much-needed confidence for independent participation in after-dark activities like dating. Braille is essential for the child who can’t read print efficiently for long periods of time without fatigue or the use of complicated reading devices such as the closed-circuit TV (CCTV) magnifier.

As I look back over what I have written, it occurs to me that I may have sounded something like a Pollyanna—“If you have a positive attitude about blindness, everything will be OK.” Of course life isn’t like that.

Your child will experience heartaches and tears and frustrations related to his or her blindness, and the last thing he or she will want to hear is a lecture about how it is respectable to be blind. Last year my son would come home about once a month and, in a huff, declare, “Why do I have to be blind? I don’t want to be blind!” The more I tried to be positive and upbeat, the more frustrated and angry he would get. Finally it dawned on me; he just needed to blow off steam once in a while. He no more likes being blind all the time than I like being middle-aged. Once I realized this, I changed my tactic. I would say, “It’s pretty hard sometimes, isn’t it?” or “Had a bad day, huh?” Often this was all he needed. “Yeah!” he would sigh, give me a hug, then run off to play. Occasionally it paved the way for in-depth discussion of what he was upset about. Sometimes blindness was at the root of it, and sometimes it wasn’t.

Finally, get involved with the National Federation of the Blind. It is common for parents to become active in our organization while their child is a baby; drop out during the school years; and get active again when high school graduation approaches. I understand why this happens. After all, I have three children in school, and I am as busy as anyone else juggling schedules crammed with piano lessons, homework, swim team meets, band, and you name it. It is all too easy to forget that our needs and feelings do not necessarily coincide with our child’s. Ironically, the blind child’s need for information, blind role models, and positive experiences about blindness—the school years—is beginning just when the parents feel that their need for information has been met.

You can help see that your child’s needs are met by participating in activities of your local chapter or state affiliate of the National Federation of the Blind. Notice that I said participate in, not just attend functions of the Federation. Car washes, bake sales, parades, picnics, legislative banquets or breakfasts, blindness information fairs, walk a thons, raffle ticket sales, garage sales, public education presentations, state NFB conventions, and so forth are just some of the many activities sponsored by National Federation of the Blind local chapters and state affiliates.

Successfully washing cars side by side with competent blind adults will teach your child more about alternative techniques and the abilities of the blind than anything he or she could learn in school or from you.

Our local chapter of the National Federation of the Blind recently participated in a city parade. We had blind members carrying a banner and marching in front of a van the chapter had decorated with streamers and our theme, “The National Federation of the Blind—Improving the Odds for the Blind.” Many members dressed up in costumes depicting the variety of jobs and activities in which the blind are engaged. Our son wore his scout uniform. As we marched we passed a scout troop watching the parade. The scoutmaster pointed to Chaz and exclaimed to the boys, “See, blind kids can be scouts, too.” As the parade progressed you could see our son’s confidence grow. It was visible in his smile, his walk, the lift of his chin, the set of his shoulders, and in the swing of his cane. He knew, at the gut level, that it was respectable to be blind.

I have often heard people lament about how the partially sighted child is in-between, being neither sighted nor blind. The National Federation of the Blind lets us look at this so-called problem from a totally new perspective. If it is respectable to be blind, then does it truly matter how much vision one does or does not have? The National Federation of the Blind wants all blind children, regardless of visual acuity, to have the opportunity to walk into the future with confidence, pride, dignity, and self-respect.

“Mom, What Does Blind Mean?”

by Pauletta Feldman

Introduction

by Barbara Cheadle, President

National Organization of Parents of Blind Children

There are a few subjects in our society that even the most confident parent finds difficult to discuss with his/her children. Trying to explain or answer a question about sex or death to an inquisitive four-year-old, for example, can leave us stammering. Sometimes the difficulty arises out of ambivalent feelings about the subject, and sometimes the awkwardness stems from a lack of experience and modeling. We simply do not know how to discuss these topics with our children because our parents never discussed them with us when we were children. Fortunately, there are many places parents can turn to for help.

Parenting classes, individual counseling, religious faith, and self-help books are just some of the avenues through which parents can get information and guidance.

But what do you do if you have a blind child? Where do you turn for guidance when your child asks, “Mom, what does blind mean?” Or, “Dad, am I blind?” Sadly, the typical parental response has been to avoid or ignore the question. I can’t count the times I have heard blind adults say, “My parents were great about letting me do the same things other kids were doing when I was growing up. But the one thing they never did was talk about blindness. It was only when I grew up and met the National Federation of the

Blind that I learned to feel good about my blindness.”

However, blind children today do not have to grow up before they can benefit from the positive philosophy and mutual support of the National Federation of the Blind; it is here for them—through their parents—right now. Take, for example, Jamie Weedman. His mother (Pauletta Feldman) and father have been longtime readers of both Future Reflections and the Braille Monitor. When Jamie was still a toddler they attended an intensive two-day parent leadership workshop sponsored by the National Federation of the Blind. Some of the leaders and participants of that workshop were blind. Parents talked with, laughed with, argued with, worked with, cried with, and learned to respect their blind colleagues at this workshop. All of this helped Jamie’s parents prepare for that day when he would ask that fateful question. Here is what Paulette Feldman has to say about that experience:

It wasn’t until my son, Jamie, was five years old that he finally asked me that question. We’d used the word blind in conversation, and he’d certainly heard it from other people. But we hadn’t really discussed blindness or its implications with Jamie. Maybe we were just “chicken” and putting off the inevitable.

However, we had decided that we would handle discussions of blindness with Jamie as we had handled discussions of sex with our older children: when they started asking questions, we felt they were ready to be told the facts.

So that day at naptime when Jamie asked about blindness, I sucked in a big breath and summoned my courage. “Blind means that you can’t see with your eyes,” I said. “I can see things with my eyes. I can see the trees and the birds and all of the other things I tell you about. But you see things in a different way than with your eyes. You use your smart fingers and your smart ears.” He was quite satisfied with that answer and didn’t pursue the subject further that day. However in the days to come, he would ask questions again. The kind of questions he asked led me to believe that, in his mind, he wasn’t the one that was different, I was! In a way, it was like his first notion of differences among people was of how they were different from him, rather than how he was different from them. I liked that—I liked how self-confident and self-loving he was.

For awhile, Jamie seemed to think that everybody we knew was blind and that there were just a few people who could see. He began asking about person after person in our family and among our friends to sort out who was blind and who was not. Gradually he came to realize that he knew more people who could see than who could not. I’m so thankful that we knew other blind children and adults so that as this realization dawned on him, he did not feel isolated or alone. The blind people that we knew were really neat people. They were friends and fun to be with, just like our other friends. They were people that Jamie really liked, and he could feel good about having something in common with them.

Jamie began school and loved learning to read Braille. He became very interested in how sighted people read. Then he began asking of everyone we knew whether they read with their fingers or with their eyes.

During the past two years since facing that first question, there have been many incidents that have brought both hidden tears and silent laughter as we have gone through Jamie’s formation of opinions about blindness. There was the day that he came home from school very indignant because a teacher had mentioned that he couldn’t see. He said. “I told her that I can too see! I can see the light!” Another day, as he and his brother sat at the kitchen table doing homework, he asked accusingly, “Is Don doing his homework with his eyes?” And he laid his face on his Brailled worksheet and said, “Then I’m doing my homework with my eyes too!” He decided that someday he was going to go to school with his brother and then he would be able to read print because they didn’t teach Braille there.

He went through a phase of picking up some lingo and developing an interest in degree of blindness. He’d ask of fellow visually impaired students whether they were “totals” or “partials” (and of course, he wasn’t a “total” because he could see some light). He also came up with some clever excuses. When reminded for the umpteenth time not to poke his eyes, his response to me was very patronizing, as if educating a child, “Mom, blind people just like to do that!” Then there was the night near Christmas when we went driving around to see the lights in the neighborhood. I tried to describe them to Jamie, but he finally said with some boredom, “I can’t see the lights, Mom. But don’t blame me!

I’m blind.”

As Jamie has gotten older, some of his responses to his blindness have begun to be tinged with sadness. One day we read a little book called, “Corky the Blind Seal,” about a seal in a zoo who lost his sight. The next day as he got off the school bus, he said, “I want to be a bus driver when I grow up!” My heart ached, and I just said,” I bet driving a school bus is fun, too.” But when we got in the house, he confessed. “I know I can’t be a bus driver. Blind people can’t drive, and I’m blind. I’m glad I’m blind, Mom. I just wish I could be blind like Corky the seal was blind, because he got to see first.” He asked if it was nice to be able to see, and I said that it was. We talked about how he could see what I see using his other senses, like when we went to the ocean he could feel the water, taste its saltiness, hear its waves, and smell it, too. He liked knowing that there were things that even people who were sighted actually couldn’t see, like the wind—that we had to hear it and feel it to know it was there just like he did.

I’ve always wanted Jamie to feel good about himself. I haven’t wanted him to think that there is anything wrong with the way he is. I haven’t been able to bring myself to tell Jamie that, according to some people, there is something wrong with being blind. Maybe I’ll regret this someday, but I figure in time he’ll learn. I hope he will come to me with his questions then and that I’ll be able to answer them. To me, blindness is a difference, a source of sadness sometimes and inconvenience at others, but there’s nothing wrong with it.

Life is a journey of self-discovery. I want Jamie’s journey to bring self-love with the discovery of his many potentials and capabilities as well as his personal limitations. We all have to face certain limitations. It’s how we cope with them that really matters. So far, Jamie has always managed to find a silver lining for every one of his clouds, to compensate for each limitation with a special strength. Why just last week he said, “Mom, aren’t you glad I’m blind and have such smart fingers and can read Braille? You can’t read Braille with your fingers! You have to use your eyes.”

Adapted from an article originally published in VIP News, a newsletter of the

Visually Impaired Preschool Services in Louisville, Kentucky.

Chapter 3:

Movement and Mobility

[PHOTO/CAPTION: Joe Cutter demonstrates some cane techniques at a workshop for parents.]

Parents: Blind Children’s First Mobility Teachers

by Joe Cutter

Joe Cutter, recipient of the Distinguished Educator of Blind Children Award, made the following presentation to the Parents of Blind Children Seminar at the 1994 National Federation of the Blind Annual Convention.

When Barbara asked me if I would be interested in speaking about parents as the blind child’s first mobility teachers I responded with an enthusiastic Yes! I was delighted because I believe this statement to be true, and I welcomed the opportunity to relate to you my ideas on this subject.

I have come to respect and value the information and positive thinking about blindness that I have gained from the National Federation of the Blind. Blind persons—including blind children and their parents—have taught me the most about blindness. In a small way, then, your sharing with me through the years comes full circle as I now share my thoughts with you.

My thoughts and words today are from a book I am writing about blind children and independent mobility. Interwoven in this book is the common theme that parents truly are the blind child’s first mobility teacher. It begins when the expectant mother introduces her baby to movement in utero. Whenever the mother sits, stands, turns, or walks, the child inside her experiences movement. Once the baby is born, the mother and father become attached to their child through touch—through holding, carrying, and playing with their baby. The joyous world of movement has begun, and it is the parents who are the first, the primary, educators of their child. It is only natural, therefore, for parents of blind children to be their child’s first mobility instructor. After all, they are the ones who set the stage for the play of movement.

If parents are the natural educators of their child, then the professionals are secondary educators of the child. In the early life of a blind baby parents may be introduced to professionals, programs, and services established to assist in caring for their baby’s needs. Parents may have a blindness professional visit their home, or they may take their baby to an early intervention program outside the home. Some of these services are given directly to the baby. In others the professionals provide guidance to parents with suggested activities, materials, and strategies that will facilitate the child’s learning. The intent of these programs is to inform parents and at times give hands-on intervention with the child.

Now, I have visited many of these early intervention programs over the years and have learned much from observing the creative teaching of many talented, dedicated, and hard-working professionals. I have also visited in the homes of many families of blind babies. I have learned equally as much through observing the creative teaching of talented, dedicated, and hard-working parents. The significant difference is that parents are not paid, and they do what they do for twenty-four hours a day. I note this difference to punctuate my observations that parents have a much longer, sustained, and intimate relationship with their child than do the professionals.

Yet, when blind babies and children enter early intervention programs, parents are often presented with an attitude which implies “We know what is best for your child.” This attitude challenges the natural teaching role of parents. When educators, whether intended or not, separate parents from the program of service, in whole or in part, then a message is sent to the parents that someone else—the blindness professional—did for their babies what they—the parents—could not or did not do. This may affect the kind of relationship that parents have with their children. Parents may develop feelings of inadequacy. They may take less initiative or be hesitant about movement activities with their babies and children if they have come to believe that the professional’s role is more important.

Speaking of professionals, I can’t help saying something that has disturbed me for a long time. Why do we call teachers who work with blind children “vision” teachers? It sounds like a contradiction in terms to me. Can you imagine getting a knock on your door and when you open the door the person says, “Hello, I’m the vision teacher. I’m here to work with your blind child.” So, I use the term blindness professional because it seems more relevant to me.

Programs of services to blind children do what they do best when they promote attuning between children and parents. The parent/child relationship is indivisible, and that is how it should be treated and respected by the professionals. Blindness professionals and other educators who appreciate this parent/child relationship will rely upon the parents as a vital natural resource. They will support parents in their efforts to establish mutually pleasing and nurturing relationships with their babies, and they will help them with accurate information about blindness.

For example, when I was studying about babies I was fascinated by something that, in some of the research, is called a voice/space event. When even very young babies hear the sound of their mommy’s voice they turn toward it in expectation of seeing mommy’s face. I discovered the first time I worked with a blind baby that this baby’s head and eyes, although he could not see, moved in the direction of the sound of his mother’s voice. This baby, too, was looking for the voice/space event. The obvious alternative technique at this point would be to assist the baby’s arm and hand to the mother’s face, linking sound with touch. This common human trait of the voice/space event, which in the sighted baby links sounds to vision, has been adapted for the blind baby by linking sound to touch. The usefulness of this adaptation depends largely upon how I, the professional, present it to the mother.

First of all, I cannot be a substitute for the mother (or the primary caretaker) in this situation. The voice/space event must take place with the mother, not me. Second, if I present this to the mother correctly, she will come to understand that she, too, could have made this discovery. She will then go on and use this knowledge and the confidence she has gained from it to make her own observations, adaptations, and compensations with her baby without my assistance. And this is how it should be. Professionals should not supplant the parents as the child’s primary educator; they should encourage it and nurture it. This includes the role the parent should play as their child’s first mobility teacher.

Mobility for children begins with play between parent and child.

In the early years parents engage in a variety of play activities with their children. The importance of play cannot be overemphasized. Play is “fun”-damental to being human. Fun and play is the child’s form of work, of getting the job done, of acting on the world, and reaping the rewards from it. The head of the Department of Infant Studies at Rutgers University, Dr. Lorraine McCune, writes, “When play is defined to include all of the baby’s freely chosen encounters with objects, a large portion of the child’s waking time is playtime.”

The implications of this statement for blind children are many. When blind children are restricted in the kind and amount of play they may perform, and when adults limit their free intentional movement, the context of their understanding of people, places, and things will also be limited. This will necessarily cut short their ability to reason, experiment, and create. Blind children are vulnerable to having play done to them, initiated for them, and taught to them in formal activities. Adults would be serving the blind child’s best interest if they would instead place their energy into setting up the environment so that the blind child could initiate his or her own play more often. Such spontaneity is fundamental to being human, but blind children are often in jeopardy of having spontaneous experiences restricted by well-meaning adults. These principles are crucial for parents and professionals to understand as they consider their role in promoting movement and mobility in the blind child.

When children are young they are learning to identify and label the world. Blind children are no different. They need to become familiar with the world, too. Familiarization develops orientation. For the sighted child, vision puts them in the action. For the blind child touch, sound, and movement puts them in the action, too. You cannot label the world for a blind child by touching it for him. To be meaningful the experience must come from the child’s own action.

Use of the cane facilitates self-initiated action and thus contributes to the creation of an active learner.

The skilled use of tools is a fundamentally human activity. For children, toys are tools! (Remember, we said that “play” is a child’s work. Toys, therefore, are a child’s tools.) They are skill-enhancing instruments. The hand-held tool (or toy) is an extension of the body in space for all children. During play the child is introduced to objects in the world. To the child all of these objects are potential toys. Some of these objects will serve an everyday function, such as the hand-held spoon, for example. A spoon is more than something you use when you eat. It is a tool of action. When we think about the spoon in this way, we can begin to understand its connection to the blind child’s white cane. The cane, too, is a hand-held tool of action to get a job done. The better the skill in using these tools—spoon or cane—the better the job will be done. Since we know that hand manipulation of tools develops over time from “on body” to “off body” for all children, we can then infer that the spoon is a precursor to the cane. Both tools manage space near and far respectively, the spoon being closer to the body and the cane being further off the body. Whether “banging” on a plate with a spoon, or “banging” on the ground with a cane, these tools demonstrate the blind child’s use of movement in space.

As the child’s first mobility teachers you will want to know what the cane can do. The cane is a tool that performs many functions.

It can inform, inspect, explore, detect, and protect. Most of all it facilitates getting to know and moving within the world. To illustrate, the cane is more than a “windshield wiper” on the world. It is the “steering wheel” that can be manipulated to take you in the direction you want to go. It’s the “headlight” which gives preview of what’s ahead. It’s the “bumper” which protects from unexpected encounters. And it is the “antenna” which is constantly receiving sounds and resonance information from the surroundings. The cane is also the “tires” which adjust to the terrain and provide a smoother, more stable ride. Finally the cane is the “side view mirror” which gives peripheral protection whenever the traveler needs to circumvent an object. Like the car, the cane is as effective as the driver using it. Both driver and cane user require training and must obey the laws of the road. Mostly the cane—like the car—gets you where you want to go.

This light-hearted analogy is a fun way to punctuate the varied uses of the cane. Thinking of fun, what child is not fascinated by a stick? It connects the child to the ground in a way that is fun. When walking, it seems natural to hold a stick and “touch the world.” Therefore, it is the most natural act for the blind child to be using a cane. Fun, play, toys, tools, self-initiated movement, canes—are you beginning to see the connections?

As your child’s first mobility teachers the decision to use a cane must be made by you, the parents.

You may come to such a decision in conjunction with the orientation and mobility specialist, or without such a professional. The point is, it should be your decision. Generally a cane will help facilitate a blind child’s movement shortly after he or she begins walking. I have known blind children, however, who took their first steps across a large space with a cane. In these cases the child was ready to walk but would not self-initiate many steps across large spaces. Therefore, observe the blind child’s movement around the event of walking. If the cane seems to promote movement, go with it. Do posture, gait, and self-assurance seem true with the cane? If yes, then it’s facilitating movement.

If the child is evaluated by an orientation and mobility professional and it is decided that he or she is not ready for a cane, then ask yourself these questions: What is my child ready for—someone’s arm? A pre-cane device that may be more complex to handle than the simple design of a cane? The less safe and efficient movement promoted by the so-called pre-cane techniques?

I believe the answers to these questions will lead most parents to the decision to take charge, purchase a cane, and get started. It may be a bit scary, and you may be a bit doubtful in the beginning, but have faith in your own intuition and in your child—you’re a team. If the orientation and mobility specialist is on the same radio station as both of you, all the better. If not, you and your child can dance to the music. When others see what’s going on they may decide to join the dance. It is not only o.k. to take the lead in starting your child with cane mobility, but it may be necessary if the alternative of inaction will negatively affect your child’s self-esteem and skill development. You cannot count on the professionals always to have the right answers. Please believe me. I’m a professional, and when I think of some of the decisions I’ve made as a professional—based upon erroneous assumptions—I want to bury my head in the sand.

I remember my personal journey in working with children. When I began teaching children I used the same post-World War II techniques all mobility teachers are taught, including sighted guide, pre-cane safety techniques, and certain readiness skills. It wasn’t until I happened to take some courses in infant studies at Rutgers University and I was introduced to NFB literature by parents such as Carol Castellano (Carol is the President of the New Jersey Parents Division and the Second Vice President of the National Organization of Parents of Blind Children) that my assumptions and beliefs about children and cane travel were challenged. And that was really scary and threatening to me. But it was also liberating. I will always remember Fred Schroeder’s article, “A Step Toward Equality: Cane Travel Training for the Young Blind Child.” I shall never forget his analogy about crayons and canes. He said that keeping a cane away from a young blind child because the child wasn’t ready to use it as an adult was like taking crayons away from a sighted child because the child couldn’t write like an adult yet.

Like the sighted child using crayons, the blind child initially will use the cane with more exaggerated movements. This is for many reasons: postural security, balance, the newness of the tool, and the human urge to experiment. Through familiarity and maturation the cane will gradually be used with more purposeful movements and, therefore, more efficiently. Please know that the act of playing with the cane is a natural way for young children to experiment. It is how they learn about the cane and how it will work for them. This playing is not a reason to discontinue the cane for fear of a lack of “readiness.” Remember, we said that play is the child’s work. Therefore, do not be discouraged if the child’s initial use of the cane appears to be just playing around. Some of the best travelers started out having fun with their canes.

Accordingly, do not insist upon the blind child’s demonstrating mature cane skills very early. Such skills as proper adult grip, position, extension, arc, touch technique, and so forth will come in time with maturation. You will risk frustrating the child, and a negative attitude may develop towards the cane if you expect too much in the way of adult cane techniques. Expect the child to use the cane from the source of control best available to him or her—hand, wrist, arm, shoulder—given the strength and control he or she has from those sources. With growth and maturation these components of movement will expand and so will the cane techniques that work off of these components.

The blind child will want to check out what is being contacted by the cane. You might notice the hand sliding down the shaft to touch the connected object, or the foot moving to check it out. This behavior is also displayed by adults who use the cane for the first time. A basic principle operating with young children is “connection before coordination.” This should be accepted as a normal stage in their learning. Do not scold the child or try to prevent the behavior. This behavior will decrease as they learn more about the world around them, and as they become more goal-oriented in their travel.

Activities that are fun and enjoyable to the child also tend to facilitate sensory integration and skill development. The cane is a natural tool for these activities. For example, children enjoy banging the cane. They like hearing the echoes they can make with it. They will hold the cane in different ways, even upside down. What they are doing is exhausting all the possibilities of what they can do with a cane. This is a fundamentally human characteristic, and we should not limit such exploration as long as it does not hurt the child or another person.

Experiences in school set the stage for what will be expected of children in their adult lives. This is true for blind children, too. But, as stated earlier, blind children are more vulnerable to having their independent movement restricted by others. Most classroom teachers and aides do not know what to expect or encourage regarding the movement of young blind children. Some educators learn quickly and are very good at facilitating movement, and others are not so helpful. This should be of no surprise to us. But what is more upsetting is that some professionals in the blindness field have limiting views about blind children and independent movement. In situations such as this the parent will need to inform not only the teacher working with a blind child for the first time, but the blindness professional, too, about their expectations for their child in the use of the cane and independent movement.

A parent cannot assume that just because an orientation and mobility specialist is consulting with the school and working with their child that the child’s movement needs will be promoted to the fullest extent. Even if you and the orientation and mobility specialist are reading from the same page of the same chapter of the same book, this doesn’t mean that what is happening in school is what should be happening. I have often given a mobility lesson to a child in school and then have come back for the next lesson a week later to discover the cane in the same location. I knew from the condition of the cane and the tip that it had not been used since our last lesson. So, it is in your child’s best interest for you to know what’s going on.

If your child is not moving about under his or her own volition, then he or she is moving about under someone else’s.

Parents will need to decide what they want for the child and make it clear to the school personnel. It is that important an issue. The blind child is being prepared to believe one way or another about his or her own movement in school and the larger world. They will either learn that they can take responsibility for their movement or not. It is that simple.

Of course, I am primarily thinking about the sighted guide. Now, sighted guide is certainly a sufficient, and sometimes appropriate, method of travel. I’m just concerned about young children’s using it as their standard operating procedure for moving around. Also, I think the term implies that the guide must be sighted. One thing I have learned from this convention and other NFB conventions is that the blind certainly do lead the blind, and most efficiently, too. Some professionals now prefer the term “human guide,” but I am even uncomfortable with this. It still implies that one person is leading and the other following. There are times when we all prefer to walk with someone, and it is not a matter of guiding or leading. Carol Castellano came up with a term that I like best. She calls it “paired walking.” And isn’t that what it really is?

To the questions of when to use the cane, how much, and where (school, home, playground, etc.), first ask yourself if the cane promotes and facilitates movement, confidence, curiosity, safety, and getting to know the world. If it does, then use it. I believe, by the way, that the cane should be used both at home and school. (By home I do not mean inside the house in which you live. I mean all the places your family may normally go with the child—the mall, restaurants, church or synagogue, homes of friends, etc.) Using the cane in one setting and not the other is a limitation and sends a mixed message to the child.

At this time I would like to share a few words with you about vision impairment, visual efficiency, and visual inefficiency. Many visually impaired children ambulate with general safety and independence in their homes, schools, and familiar areas outdoors. The need for the use of the cane may not be so obvious for these children. Therefore, here are some questions you might want to think about if your child has vision:

1. Is your child relaxed while moving independently?

2. Is your child’s stress level elevated in unfamiliar or congested areas?

3. Is your child’s performance in street crossings and night travel age-appropriate?

4. Are your child’s gait and posture negatively affected as a result of pushing vision to the point of inefficiency?

5. Are you holding your child’s hand not because you want to, but rather to avoid uncomfortable or difficult-to-manage travel situations?

6. Do you think the cane may facilitate safe, effective, efficient, or confident travel?

If the answers to any of these questions are yes, you might want to give the cane a go. If you’ve answered yes to any of these questions and are still doubtful about trying the cane you may have hidden negative attitudes about blindness which are getting in your way of making a logical decision about the cane. As your child’s first mobility teacher, you owe it to your child to keep an open mind about the cane.

One opportunity that you have here at this convention is to observe visually impaired travelers using canes. You might think of this as your NFB Convention School, and this is your 101 course in mobility. After all, you will remember that you are your child’s primary mobility teacher. Observe the confidence, poise, relaxed posture, and grace with which they move. Observe their safety and efficiency. One of the things, by the way, that I would like to do at this year’s NFB Convention School is to receive a mobility lesson under blindfold by a blind mobility instructor. So that’s an open invitation to anyone here that is blind and teaches mobility.

One insight I’d like to pass on to you is something I was told by a parent who learned this by observing blind people with canes at her first NFB convention. I think it sums up many of the thoughts I’m sharing with you about vision and visual inefficiency. This parent told me she had concluded from her experience that you have your vision for what you can see, and you have the cane for what you can’t. I can think of no other more truthful or basic statement than this on the issue of using a cane.

I think it’s important to share a word or two with you about blind children who have developmental delays. All children observe the world through their sensor motor systems. Vision is not essential to observe the world. The brain is an equal opportunity employer and does not negatively discriminate against the various modes of gathering information and observing the world. The five senses, like fingers of the hand, retrieve information and give meaning to the world and the child’s movement. Blindness is a physical characteristic, the absence (partial or total) of sight. I do not think it fundamentally alters how humans think or adapt and compensate. We do not think with our eyes. We think with our brains. So, whether we read Braille or print, or communicate with sound or manual sign language, it is the brain which takes in the sensory information, decodes it, and processes it.

The developmental route for blind children who have added factors impacting upon their development—cognitive, physical, emotional delays—is more precarious. These children are especially vulnerable to having others do for them what they can learn to do for themselves. But, like all children, they thrive on a can-do approach. If anything, these children need more of the “learning by doing” method. Remember, the process of independence begins with self-initiated action. It is through their own action that the child has the chance to observe the consequences of that action, then refine it and practice it as a new skill. Children who are given the opportunity to initiate their own movements are motivated to do more, learn more.

When others do the movement for, or to, them, children lose interest in their own activity and become passive.

For example, a blind child who uses a wheelchair would have greater possibilities for independent (self-initiated) movement with a one-wheel drive or motorized wheel chair. With one hand the child could operate the chair, and with the other use a white cane for preview of obstacles ahead. This set-up, which promotes independence, would be superior to the alternative of the child’s being constantly dependent upon someone else to both push and guide him. In fact, I saw someone in a wheelchair this morning who was using a cane for preview.      

If you suspect that your child is delayed in development by factors other than blindness, you will need to secure reliable information and services to provide a sound menu of experiences and activities. To such a menu you can add the alternative techniques of blindness. As your child’s first mobility teacher you can creatively adapt and compensate along with your child. You can promote your child’s self-initiated movement, and you can expect others to respect the goals that you set for independent movement.

In Budapest, Hungary, there is an interesting program called conductive education. It’s a program for the physically impaired child with cerebral palsy and other physical impairments that affect the child’s development of independent movement. Some of these children are also blind. The program’s philosophy is ortho-functional. The child learns by doing. Self-help skills are essential and valued along with academics. It is more important, for example, for a child to get to class independently and late than to get there on time because of dependency upon someone else. The conductive education approach believes that if a child is perceived as dysfunctional, then the goals set for that child will reflect those perceptions. How we perceive a child can make all the difference in the goals we set for them. It is the difference between using a promotion model versus a deficit model. The deficit model stresses limitations. The promotion model emphasizes possibilities. The independence these children are likely to achieve depends a good deal upon our expectations of them. Do we see children with limitations, or children with possibilities?

Let me give you an example of what I mean. The following sentences are from the book First Steps, published in 1993 by the Blind Children’s Center. These sentences demonstrate the disturbing sighted bias and erroneous assumptions about blindness yet to be found in the professional literature.

This is the first sentence of the introduction:

“The world of children with visual impairments is a very different one from ours.”

My response is, “How so?” Are the authors implying that blind children are fundamentally different from sighted children? I don’t believe it, and the evidence doesn’t support it. We all live in the same world.

Here is the second sentence of the introduction:

“Although these children are faced with a puzzling array of sensation and information, our loving guidance can create a safe and nurturing path for them to follow.”

My response is that the current research about how children learn, specifically infants, suggest that the world is not perceived as a puzzle. Rather infants organize their sensory information to make sense out of the world. They improve upon their perceptions, adapting and compensating as they get more information. It would appear that the authors altered these data to fit their pre-conceived notion about blind children. The sentence implies that what is needed for learning is for blind children to follow the adults’ lead instead of the adults following the child’s lead. Again, this is inconsistent with my experiences and with the research.

The third sentence of the introduction reads:

“Parents, family members, educators, and health care professionals find themselves drawn together by the formidable challenges of these children’s infant and preschool years.”

In my response I ask you to consider these definitions from Webster’s of the word formidable:

1. causing dread, fear, or awe. 2. hard to handle or overcome; as a formidable job.

Roget’s College Thesaurus lists the following synonyms for formidable: appalling, tremendous, arduous, or Herculean.

I would not choose any of these words to describe my role or the parents’ role with the blind child. This is not the message I would choose to communicate with parents and other educators about what it will be like to raise or educate blind children. All parents are presented with challenges in raising children. The differences in raising blind children will necessitate at times different challenges. From my experience, probably the most “formidable” aspect of raising a blind child that parents will face is trying to get the professionals to provide the appropriate education and training which their child needs. And this is a problem with attitudes and bureaucracies—not the child and not the physical fact of blindness.

Finally, here is a sentence from the book regarding the sighted guide technique:       

“The intent of using a human guide is not to relieve the child who is visually impaired of his travel responsibility, but to provide the child with the skill of taking an active role when traveling with a sighted person within both familiar and unfamiliar areas.”

 My first response is, how can you observe your own movement off the arm of another person? This is a logical impossibility. Whose responsibility is it for the active movement of negotiating the environment? Why is it assumed that when a blind child is walking with a sighted person that he or she will be naturally guided? What is active about following another’s lead? And why does the guide need to be sighted? There are times when sighted guide is appropriate, but to suggest that there’s some skill in it which a child needs to learn for independence is ludicrous and false.

The subtleties of the written word hit home hard when you are the subject matter. Blind persons and parents of blind persons hear the bias in these words clearly. First Steps is written by a professional, credentialed group of authors. The Blind Children’s Center provides a real service for blind children, and in many respects this book is rich in useful information. But at its core are assumptions that communicate to those thirsty for knowledge erroneous beliefs about blindness. I believe these assumptions damage blind children. History has given us enough of these harmful, false images. We do not need them dressed up in the respectability of professional jargon, then pawned off to us as modern, scientific concepts.

It is time we stress a promotion model, not a deficit model, of blindness.

It has been said that “We should study right research and research the study right.” Research would better serve the needs of blind children, and our energies would be put to better use, if we spent more time raising questions and debunking erroneous assumptions about blindness. Here are some questions I have:

1. What do we truly believe about the capabilities of blind travelers when professional organizations will not certify blind orientation and mobility specialists?

2. What are the vulnerable areas in the blind child’s opportunities to express their innate “need to know” and “drive to move”?

 3. What is really essential to functioning with the cane?

4. How can the sighted guide, pre-cane techniques, or pre-cane devices be considered precursors or predictors of independent travel? Where is the research to substantiate these common assertions?

5. What do orientation and mobility specialists believe about the parent-child relationship?

6. How can the use of resonance and the broader perception of sound and space be facilitated in blind babies and older children? How do we enhance or distort its use in the type of canes we recommend and choose for them?

7. Has our sighted bias ignored the contribution to movement that the utilization of auditory object perception (echo location) facilitates?

8. What subtle, or not so subtle, messages do we send to blind children that discourage them from moving actively in the world?

9. How do we interrupt or inhibit the self-initiating and sustaining movement of blind babies and children?

10. How do our touch and physical handling of blind babies and children affect the development of the use of their own touch? How do the touch and verbal cues which we impose upon children in a travel situation affect the abilities of children to figure out and solve their own travel problems?

11. What do we do to a blind child’s interest in and ability with the cane when we try to teach adult skills for which they are developmentally not ready? When we delay giving them a cane in favor of a pre-cane device?

12. How are the blind child’s self-image and desire for independence affected when we teach them that someone else will take responsibility for their own movement? When that “someone else” is always sighted?

I believe that the consequences of the orientation and mobility profession’s not addressing these questions and many others will result in the increased vulnerability of a profession already in jeopardy.

Meanwhile, the blindness movement has been developing its own growing body of literature based upon a different perspective—a perspective which has evolved from over fifty years of the collective experience of thousands of blind people. Here are some of my observations of the philosophy which fuels the passion and reason found in the NFB literature:

1. It’s positive.

2. It assumes that blindness need not be “fixed.”

3. It promotes the concept that “differences are not deficits.”

4.The alternative techniques of blindness promote a “can do” approach to life.

5. It deals with issues and concerns that are fundamentally human.    

What I have described to you today is what I call a pediatric perspective on independent mobility. I hope it fuels your beliefs and actions—as your child’s first mobility teachers—in promoting your child’s independent movement in the early years.

In summary, the “need to know” and the “drive to move” are fundamental to being human. Therefore, orientation and independent mobility is more than a way of moving from one place to another, it is a way of life. It is a way of knowing, a process of reciprocal interaction, of being with the world instead of separate from it. This process during the early years of life enables the blind child to engage in the world in an increasingly independent manner. During these early years a common thread will sew together the variety of experiences. This thread is the fundamental fact that, as all children, blind children have an innate sense of order, an inherent ability to organize their experiences, and the ability to learn from (and improve upon) those experiences. From the earliest sensor motor schemes to the formation of intentional thought and complex problem solving, the drive to “want more” and to “make more” out of what reality at any given moment appears to offer, is as much the foundation of purposeful thought and movement for blind babies and children as it is for those who are sighted.

It is of particular importance that parents be provided with accurate information both about blindness and this natural process so that they can better teach and assist their children to interact independently with and within the world. Together as a team—parents, child, and professionals—we engage in common goals that will facilitate the child’s natural “need to know” and the “drive to move.”

The history of formalized orientation and mobility has entrenched an adult-to-adult approach, with sighted guide and pre-cane techniques being taught prior to cane instruction. This tradition can be thought of as a top-down model. In this model adults first learn the concepts then learn the motor schemes to match these concepts. With a pediatric perspective, however, the approach will be bottom-up. (I want to acknowledge the influence of Dr. Lorraine McCune on my thinking. Her knowledge and clear thinking about what babies do and how they learn contributed much to the development of this model.) First, the child learns purposeful movement, then with a solid foundation of motor-schemes upon which they have learned to trust and rely, the child “learns” the concepts. Out of the experience come the concepts, the ways of thinking about the world. With this bottom-up model, parents and other educators will explore strategies, activities, and tools—such as the cane—that will facilitate purposeful thought and purposeful movement.

This approach rejects the notion that children must have a certain maturity level before they can use a cane for movement. Maturity unfolds as movement and motor-schemes become more sophisticated. Canes can assist in this process from the moment a child begins to walk.

In this bottom-up model, cane travel will not be considered an isolated set of skills. Instead, the spoon becomes the precursor to the cane. Tools to manage space that are hand-held and get a task done (spoons, scoops, shovels, etc.) will be respected in this bottom-up approach. Motor skills for cane usage, from this perspective, are not a mysterious set of unique skills requiring extraordinary knowledge and specialized training. They are extensions of ordinary motor-schemes and tool-usage that all children may learn, and parents may teach. There is also no need for so-called pre-cane techniques and pre-cane devices in this approach. In truth, pre-cane techniques are actually alternative travel techniques (which are, incidentally, inferior to cane travel techniques), and not at all necessary in any way for cane usage. The same is true for pre-cane devices. They are actually alternatives to the cane, and in no way add to a child’s preparedness for the cane.

Also with this approach, parents and other educators will be cautious not to insist prematurely upon cane techniques that may be appropriate for the adult but not be at the appropriate developmental level of the blind child. The blind child needs to explore, figure it out, and develop self-taught solutions that are respected by the adults in their lives.

Pediatric orientation and mobility from the bottom-up perspective respects the developmental needs of all children: security, movement, interpreting sensory information, communication, and autonomy. These needs are met in the day-to-day living of the child; in feeding, bathing, playing, socializing, and exploring the world.

The blind child’s use of the cane is simply a natural part of growing up; as normal as learning to use a spoon.

Above all I want to stress that our beliefs as parents and educators will affect what we give and how we give it, what we teach and how we teach it, and what our expectations will be for our blind children’s development towards independence. These beliefs will not only affect our relationships with each other, but what our children will ultimately come to believe and expect of themselves as blind persons.

I hope that these thoughts assist you in your role as your children’s first mobility teachers.

[PHOTO/CAPTION: Nalida and Mika at the NFB Convention.]

Everyone Has a Cane, Just Like Me!

by Nalida E. L. Besson

This past summer, Mikaëlla attended her third convention of the National Federation of the Blind. We began attending the annual conventions in 2000 when Mika was two and one-half-years-old. Mika already had a cane by then. She was a late walker, walking just two weeks before her second birthday. A few months later, we bought Mika her first cane. The NFB parents’ division (the National Organization of Parents of Blind Children—NOPBC) gave her a longer, lighter cane at the 2000 convention.

Mika is blind (but with some partial vision) from congenital cataracts and secondary glaucoma. She has problems with depth perception and would stumble and fall constantly when there was a change in floor surfaces such as doorway thresholds. When she began using her cane, she began to feel the changes and no longer fell and bruised herself. Just a few minutes of mobility lessons and Mika was up and running. Using the cane was like second nature for her.

A lot of people were skeptical when they first saw Mika with her cane. But Mika’s proficiency for her age taught them all a lesson: Never underestimate a child. An orientation and mobility instructor who came to do a consult was pleasantly surprised that Mika could use the cane. Mika never wanted to use the pre-cane device that the instructor had brought for her. In fact, the pre-cane was so awkward for her to use that it caused her to stumble. The orientation and mobility instructor was happy to write up a plan for Mika to use her long cane.

Mika’s grandma was worried about the cane at first. Before getting her cane, Mika had often tripped on the chair legs in grandma’s kitchen. With the traffic in that kitchen, chairs were often not pushed in and Mika would trip on the legs. Mika’s grandma thought Mika would fall with the cane. “Well, just look at her go,” she marveled as Mika safely walked around the chairs by finding the bottom of the chair legs with her cane.

Even with this early cane experience, I don’t think Mika really got a good appreciation for the cane until the 2002 national convention. At four and one-half, she understands a little more about what being blind is. She knows that her papa is blind like her and has a cane like her. She also knows that NFB members she meets at local chapter meetings are blind like her and that some use canes while others use dog guides.

At the 2002 convention, as Mika walked among thousands of people using canes, she became excited. “Everyone has a cane just like me!” she kept exclaiming. Every time her cane crossed the path of another person’s cane, she would giggle with excitement because she had “found a cane.” When we stopped to chat with other families, Mika would say, “This little girl [or boy] has a cane too.” We told her that a lot of people have canes because there are a lot of blind people at the convention.

Mika had such a great time at the convention. Everywhere she traveled, cane in hand, she met other convention attendees who liked to come up to her and show her their canes. Mika would measure hers to the much longer canes.

Here, at the National Federation of the Blind convention, Mika was absolutely at home. Almost everyone had a cane just like her. She did not constantly hear whispers of “What’s wrong with the little girl.” Instead, she constantly heard, “You’ve got a cool cane.” It is no wonder that on the last day of the convention Mika said, “I like the National Federation of the Blind!”

[PHOTO/CAPTION: Doris Willoughby holds a copy of her book.]

Independence and Mobility

Excerpts from

Modular Instruction For Independent Travel For Students Who Are Blind Or Visually Impaired: Preschool Through High School

by Doris M. Willoughby and Sharon L. Monthei

As the excerpts below indicate, the 398-page book Modular Instruction For Independent Travel For Students Who Are Blind Or Visually Impaired: Preschool Through High School is a practical, positive, and very readable resource for anyone, family member or teacher, who interacts regularly with a blind child. It’s also a bargain at $20 plus shipping and handling. Published and distributed by the National Federation of the Blind, it can be ordered by mail, by phone, or online from the NFB Materials Center, 1800 Johnson Street, Baltimore, Maryland 21230, (410) 659-9314; www.nfb.org

Editor’s Note: We begin the series of excerpts with a section called “Who Should Teach” from Chapter B, “GENERAL PRINCIPLES AND OVERALL PLANNING:”

Who Should Teach?

Everyone in the child’s environment is his/her teacher. A child learns daily living skills from parents and siblings; social conventions from neighbors and relatives; academic and other skills from various schoolteachers; games and activities from young friends. Orientation and mobility is part of this large picture.

If a child does not develop increasing independence—including the use of a cane at an early age—he or she will expect continual assistance from others in getting around. If parents and school staff see that the child does begin cane usage early, then he or she will develop increasing independence appropriate for each chronological age.

Modular Instruction assumes that at least one person in the child’s life (probably a teacher or parent) has made serious study of how the cane is used, and takes the lead in guiding others to facilitate learning. There are many ways to gain this knowledge; the National Federation of the Blind will be pleased to help you find a source.

When this book uses the term “teacher” or “instructor,” it means whatever adult is working with the student in the activity.

Parents

The foundation of all learning occurs in infancy and very early childhood. The general development of infants and toddlers is beyond the scope of this book. However, many

Modules contain suggestions which apply to toddlers and even infants.

Children walk with their parents to the neighbor’s house; to cross the street; to go from the car to the drugstore. They go with the family to the grocery store; the doctor’s office; the mall; the zoo. The Modules in this book give specific ideas for making each excursion an age-appropriate learning experience.

When an educator takes the lead in instruction, parents nevertheless continue to guide skill development outside of classes.

Parents also monitor the instruction itself to assure that it is appropriate. And some parents, facing a lack of educators with appropriate knowledge, take the lead for instruction themselves.

Other family members—aunts and uncles, grandparents, siblings, and other relatives—share the responsibility. Often someone other than the parents (even a fairly young child) happens to have the best opportunity to teach a particular thing.

In a residential school, the houseparent is much like a part-time parent. Development of skill in travel is a part of this responsibility.

Specialized Teachers

Specialized teachers of blind students typically take the lead in cane travel instruction. The lead instructor should outline a curriculum to develop skills in an organized manner. He/she should ensure that the child learns what is currently needed (as by emphasizing street-crossing immediately for a city child.) At the same time, he/she should make sure no major age-appropriate skill is completely omitted. (For example, a rural high school student should visit a larger town and work with traffic lights.)

The specialized instructor must not exist in an “ivory tower” in solitary splendor.

Continual consultation with parents and with other teachers is essential. Specific practical suggestions, with demonstrations as needed, enable other adults to guide the child in integrated, consistent progress.

At times, the specialized instructor may play additional roles by default. If the parents, despite much consultation, never take the child along to a store, the instructor should spend extra time with this. If the sixth grade teacher has promised to show the blind student the way to the rest room, but somehow this is not happening, the travel teacher may need to assist.

Similarly, there are many places around the school where the class may not go as a group, but which sighted students will understand through sight. The flagpole and the kitchen are two good examples. Sighted students see the flags flying and occasionally watch the custodian run them up and down. They see the kitchen when they walk by in the lunch line. But the blind 6-year-old may not know what a flag and its pulleys are actually like (he cannot reach the flag in the classroom either). He hears the clatter of the kitchen, but may not really understand what is there. When the travel teacher’s lesson focuses on a single interesting location, it provides great interest and variety (vital for the young child) as well as filling in gaps in concepts.

Gaps in knowledge can occur at home also. The travel teacher may conduct many lessons near the home of a preschooler who is just learning to get around in a large yard and the nearby neighborhood. The teacher may help an older student walk between home and school, between home and the bus stop, between home and a nearby convenience store, etc.

Classroom Teachers and Activity Leaders

Many different teachers carry out activities which relate to these Modules. Day care providers, as well as school and preschool classroom teachers, are included. Leaders of Scout troops, religious groups, and other activities will also find this book relevant.

Routinely, preschool and elementary school groups tour the dentist’s office, the zoo, the grocery store, the City Hall, etc. Leaders will find these Modules helpful in making each excursion an age-appropriate learning experience.

When the specialized teacher introduces a skill, others must encourage and remind the child to keep it up. They must see that opportunities exist to put the skill into practice.

The Instructor Who is Blind

The Module, “The Blind Travel Instructor,” provides suggestions on alternative techniques. The parent or teacher who is blind or visually impaired will find this Module helpful. If the instructor has some other disability, these suggestions can provide a starting point for ideas. The National Federation of the Blind will be pleased to provide specific suggestions and the names of instructors who have disabilities.

The Handbook for Itinerant and Resource Teachers of Blind and Visually Impaired Students includes two examples of successful blind teachers.

Editor’s Note: Two of the first questions parents ask when discussing the use of the white cane is, “How long should it be?” and “Which kind is best?” Sharon L. Monthei addresses these questions in “Module 1: DESCRIPTION OF BASIC TECHNIQUES (Including Stairway Techniques).” Here is what she says:

The Length of the Cane

There is some debate about the appropriate length of the cane. Blind people have found through experience that the length of the cane is an individual matter, depending upon the length of stride, walking speed, and reflexes of the student. To consider the length of the cane, hold it vertically in front of the individual: ordinarily it should reach somewhere between the armpit and the nose. Shoulder height is a good length for a first cane. A cane reaching only to the sternum (breastbone) is not long enough for the average student to assume a normal walking speed with safety. The cane must be long enough to allow a student two steps to stop.

Generally speaking, a traveler will want a longer cane as speed is developed, and this should be left up to the student who is an experienced traveler. The desire for a longer cane should be viewed as a positive sign.

One way to check whether a cane is the right length is to observe where the foot steps in relationship to the cane touch which would cover it (i.e., the place where the cane last touched on that side). If the foot touches approximately the same place the cane did, the cane is the right length. If the foot touches in front of where the cane touched, the cane is too short. If the foot touches significantly behind where the cane touched, the cane is too long. (Or, occasionally, the stride may be found to be much too short.)

The cane also must reach two steps ahead on stairs. Although shoulder height is a good length for an adult’s first cane, this tends to be too short for a young child. For children, generally the cane should reach as high as the nose when held vertically.

Since children grow, it is necessary to change cane lengths periodically. Some National Federation of the Blind state affiliates have cane banks for kids, so that canes in children’s sizes are available on loan and can be traded in when necessary. Since it would not be unusual for a child to change canes ten or more times from early childhood through adolescence, this is a considerable saving.

Which Cane to Use

The best cane currently on the market is called the “NFB straight cane.” It is hollow fiberglass with a rubber and metal tip and plastic cylindrical handle. This cane is the most sensitive because it is light and flexible, is made in one piece, and has a metal tip which provides information both through touch and sound. It is also weighs only a few ounces so that small hands do not become tired using it. Because of its construction, it can be used with either hand or switched from hand to hand when convenient. It is available in children’s sizes (with handle and shank properly proportioned for small hands) from the National Federation of the Blind at the National Center for the Blind.

In my opinion, the next best cane on the market is sometimes called a Rainshine™ cane after the company which manufactures it, and also sometimes called the Iowa cane. It is solid fiberglass and is otherwise much like the NFB straight cane. It is not quite as sensitive or as light as the NFB straight cane. Some people prefer this cane because it is virtually indestructible.

Many other straight canes are rigid, have nylon tips which do not slide easily, and provide little information about substances touched. They wear in such a way as to make the cane either left—or right—handed. (This problem is partly due to the “golf grip” handle often used.)

Collapsible canes have one main disadvantage—they do collapse. They are not very sturdy because they are held together either by nylon cord or by telescoping joints. The movement of the cane shakes the pieces apart. Because they are not one solid piece, they do not telegraph information as accurately. Many blind people buy them so that they can collapse them when they don’t want people to know they are blind. Use of a collapsible cane encourages avoidance of facing the real issues of blindness.

If a collapsible cane is used at all, the best use is as an extra to be kept in reserve. For example, it might be kept in the desk at work in case something happens to the regular cane.

Editor’s Note: Independent travel is not just about how to carry and use a cane. It’s about orientation—knowing where you are and what is around you as you move about in your environment. It stands to reason that independence will be severely limited if knowledge about the environment is sparse. The following excerpt is an example of how the modules in this book combine the elements of cane techniques, orientation skills, and environmental exploration. It is also an example of an approach that is especially effective with very young children.

Module 23

PORCH OR DECK

Objective: The student will name the outside features of typical houses, examine them where possible, and discuss how they relate to inside structure.

Age of Student: Preschool through primary grades

Primary Skill Emphasis:

General travel

Stairs

Examining things tactually

Detecting step-downs or drop-offs

Additional Skill Emphasis

Structure of buildings

Finding a seat

Doors and doorways

Sound direction and meaning

Air currents and echoes

Interpreting odors

Barefoot walking

Hills and inclines

See Also (Other Modules):

Back Yard Boundaries

Back Yard (Overall)

Inside and Outside the House

Home—contents of room

What is a “Room?”

Unfinished Basement, “Crawl Space,” or Attic

Utilities and Trash

Teacher Preparation: Look carefully at each port or deck. What features are particularly interesting? Is there a place where the student could climb on and off without using the steps? Is it possible and safe to go underneath, at least for a short way?

Activities:

Example 1: Details of One Porch or Deck

“The Johnsons said we could go onto their deck today. Look with your cane for the second sidewalk to the left. Turn there and walk toward the house. When you find some steps, walk up onto the deck and look at it.”

Note that the steps have no railings at the side; sweep the cane from side to side enough to avoid stepping off sideways.

Note the sound of the cane tapping the wooden floor. It sounds different than on an indoor wooden floor.

Find the door leading inside. If possible, walk in briefly and note what room opens onto the deck.

Walk around the perimeter of the deck, noting its size. Is there a railing?

Examine planters or other features. Sit on each chair or bench. A triangular corner seat may be a new experience.

Look for places where it is easy to get off and on without using the steps. (Reach over the edge with the cane to verify height.) Practice getting off and on at various places—climb, jump, or simply step. (Some blind children believe this is never possible.)

Go underneath to experience how it feels. Is it cool? Does it smell musty? Tap the underside of the wooden floor (probably with the hand, not with the cane). Are things stored underneath?

Example 2: Compare Others

In a similar manner, examine and compare various kinds of porches and decks.

Explore a deck that is high above ground level, with many steps leading up. Note the guardrail. Understand that stepping off would cause injury. Stand upright underneath.

Walk around on a large porch that has a roof over it. Can you easily step on and off at many different places?

Explore an enclosed porch which has screening or windows. Why is it called a porch, even though it has walls and a roof?

Examine an entrance which has no porch or deck. Are there steps, a welcome mat, or other typical features?

The 93 modules in the book are grouped into 11 categories. The first 13 modules are under the category BASIC TECHNIQUES. Some of the other categories are: At Home—Indoors, At Home—Outdoors, At School—Indoors, At School—Outdoors, Community—Outdoors (Increasing Skills), Public Buildings—General, and Outdoor Locations.

Sharing Creative Movement with your Child

by Edwina Peterson Cross

Introduction

by Barbara Cheadle, President

National Organization of Parents of Blind Children

It’s wonderful to be told, as parents of blind children, that our children are more like sighted children than not. And it’s reassuring to hear that blind kids, given the opportunity and training, can participate in ordinary activities with little or no assistance and maybe a few adaptations here and there. But it’s quite another thing to behave as if we really believe it. Especially when it comes to the most ordinary physical activities.

Parents are often stymied by the simplest things—teaching a child to tie shoes, bounce a ball, skip rope, climb a tree, use a knife to cut meat or spread peanut butter, walk quickly, climb steps gracefully, and so the list goes. It isn’t hard for blind children to do these things—if given the opportunity to practice the basic body movements upon which these skills are based. And that practice should begin as soon as the child can move. It isn’t work for the child—it’s play, and it’s fun. But these playful movements are building a foundation for very important physical and social skills which the child will need later in life.

You will notice that the following article was written for the general public—not for blind children at all. But the information is basic to all children, and many of the suggested activities can be done with few if any adaptations for blind children. Here it is:

My mother says I began dancing before I was born. It certainly seems I have always known the joy of movement—movement that combines the physical body with the mind and spirit. It has often been my privilege to share that joy with children by teaching them creative dance.

Before birth, a child is constantly exposed to rhythm—the internal pattern created by its mother’s heartbeat and its own. Very early in life, a baby will indicate a love of sound and movement in many ways. A two-year-old stops to listen to the stereo, and you can almost see her thinking, “The music is all very well, but it’s not quite enough!” Her arms lift, something moves inside her, and she begins to dance.

My creative dance classes begin with three- and four-year-old children. At this age, children move instinctively, as they’re still free of the inhibitions that can stifle movement in adults and older children. Dancing enhances their creativity and reinforces the idea that moving in their own way is right and good. Older children can experience the joy of movement and can go on to more and more advanced explorations, but sometimes they must shed inhibitions and shyness before they are able to let themselves move freely.

While a formal class in creative movement or creative dance can be a place for a child to experiment with different ways of moving, there are many activities a parent can do to nurture a child’s instincts for creative movement.

Parents can help to develop that creative spirit by reinforcing a free, uninhibited style and movements that are unique and different. A child needs to understand that not all movement is competitive or goal-oriented. Like art, movement can be an expression of a child’s inner self. Mom or Dad can even encourage while correcting in a time and place where movement isn’t appropriate. “I see your beautiful butterfly wings. Right now you need to fold them up and be as quiet as a caterpillar. When we get home you can fly them all over the backyard, and I’ll watch!”

Understanding the ten basic elements, or building blocks, of dance is helpful to parents, since all movement is based on these elements. The child uses them much as he uses different media for art (crayons, paint, clay). They are tools with which the body and mind work.

The building blocks are simple.

Size: Big movements, small movements, and everything in between.

Directions: Moving forward, backward, sideways, up and down.

Level: Movements close to the ground (low level), stretching, reaching, jumping (high level movements), and everything in between.

Shape: Body design in space.

Steps: Walk, run, hop, jump, leap, gallop, slide.

Body moves: Stretch, bend, twist, swing, sway, shake.

Body parts: head, shoulders, arms, hands, hips, back, feet, toes, etc.

Force: Sharp or smooth, tight or loose, strong or light.

Tempo: Fast or slow.

Pathway: The path in which the movement takes the dancer.

The atmosphere of movement should be one of exploration and experimentation—discovery by doing. As children learn the elements they begin to translate each one into movement, using the elements separately and in combination to produce interesting and creative movement. There is no right or wrong.

Readily available objects help children to “see” movement. A rubber band for “stretch,” pipe cleaners for “bend,” jar lids for “twist,” a weight on a string for “swing,” a top for “spin,” a broom against the wall for “lean,” trees blown by a high wind for “sway.” There is no better way to understand “shake” than to watch a wet dog! After they have watched and digested, children can translate each new word into movements of their own.

As they begin to incorporate the elements, they can try combining them in different ways. A suggestion could be, “Can you make a very tiny shape and still swing something?” or “See if you can move forward at a low level.” Questions work well, too—“What can your arms do while your feet are sliding?”—as do reinforcing statements like, “You’re moving very, very slowly as you turn!” Verbal directions and reinforcements are better than an adult’s physical demonstrations, because children learn early to imitate, and at this stage, imitation is the antithesis of creative movement. Children need to experiment and discover the wonderful things their own bodies can do. By developing these concepts, the children’s vocabulary and verbal abilities develop along with their movement skills.

There are other ways to make movement ideas more concrete for children. Some items they can observe and translate into their own movements are: pinwheels, crepe paper streamers, balloons, lightweight brightly colored scarves, loops of tricot, yarn balls,

Chinese jump ropes, bells strung on elastic to go on wrists and ankles, garbage bags filled with air and tied shut. A hot-air popper set in the center of a large sheet and allowed to pop the corn without the lid provides a memorable experience in movement (when watched from a safe distance!) Watching food color slowly dissolve in water, studying the cat, blowing bubbles—any movement that the child can analyze and transfer into her own movement vocabulary is valuable.

Language, music, literature, art, and poetry can be used as springboards to movement. A Rainbow of My Own by Don Freeman, Where the Wild Things Are by Maurice Sendak, The Bear Dance by Chris Riddel, Jamberry by Bruce Degan, Grandfather Twilight by Barbara Berger, and The Rainbow Giblins by Ulde Rico are picture books that can stimulate thought and feeling and help get movement ideas flowing. Children love to move to the poetry of Shel Silverstein, Christina Rossetti, and Myra Cohn Livingston, as well as Robert Louis Stevenson and William Shakespeare. Sing a Song of Popcorn, published by Scholastic, Inc. is a good collection of poems, many of which translate easily into movement.

Music is an invaluable companion of movement, and any kind of music works. Children respond well to a strong beat, but also love to move to all varieties of classical music, rock, and jazz. The flavor and the feeling of the music can be varied to provide different movement experiences. Children love to move to the beat of a drum or just the clapping of hands. Clapping out the syllables of their names or the name of foods: ap-ple,

lem-on, ba-na-na, lime, is a good pre reading exercise, too.

The more children move, the more they develop strength, flexibility, and awareness and control of their bodies. Movement as creative expression can be a pathway for building self-awareness, self-image, and self-direction—and it’s fun!

Reprinted with permission of the author from Welcome Home, Volume 13, No. 12, December, 1996, a publication of the national nonprofit organization, Mothers At Home.

Chapter 4:

Touch: Another Way of Seeing

[PHOTO/CAPTION: Deborah Kent Stein]

[PHOTO/CAPTION: Kyra Sweeney enthusiastically examines a stuffed snake at a

Sensory Safari display.]

Another Way of Seeing

by Deborah Kent Stein

Our first memories are said to contain themes which remain crucial to us throughout our lives. When I think back, I find that my earliest memories all have to do with touch. For me as a blind child, touch meant seeing—seeing in the widest sense of perceiving and understanding. When I was free to touch things I was in my glory. I was fully connected and involved with my environment, exploring, making discoveries about the world around me. In one of my very early memories I am about two-years-old. My father is lifting me in his arms so I can reach over the edge of a large cardboard box. Inside the box my hands find a pile of warm, wriggling bodies—soft fur, bony heads, wet noses, and curious, lapping tongues. “See?” Dad says. “Fluffy’s puppies! Look!”

In another memory, I am perched on a stool at the kitchen counter while my mother prepares a chicken dinner. Patiently she shows me the cold, plucked bird lying before us. She points out the legs, the wings, the breast, and the place where the head used to be. My hands explore every nuance of poultry anatomy. This is our ritual whenever we have chicken for dinner. I get to look at the chicken.

Not all my early recollections are such happy ones. In another memory, my cousin holds a crayfish captive in a jar. I beg to touch it, but the grown-ups say no. They insist that its claws will pinch my fingers and hurt me. Someone gives me a stick and says I can touch the crayfish with that. But I can’t learn anything about this mysterious creature by probing it with the tip of a stick. I need to study it with my hands, and I am not allowed. I remember bursting into tears of frustration as the grown-ups repeated that the “Don’t touch” rule was for my own good. When I heard the dreaded words, “Don’t touch!” my quest for knowledge was thwarted. I was cut off from meaningful experience. Intriguing portions of the world were forbidden to me, and I was forced into passivity.

Sighted children, too, hunger to engage with the world through touch, though often it is forbidden to them, too. Whether they can touch or not, they can still gather volumes of information through their eyes. The figurines on a shelf, the umbrella leaning in the corner, the heavy drapes that might provide a place for hide and seek—each new object is a source of fascination. Sighted children never stop looking and learning. Blind children need to look and learn too, in their own way—by using their hands. To my immense good fortune, my parents instinctively recognized that though I was blind, I had the same need as any other child to learn about my surroundings. My parents understood that my blindness need not hold me back. My experience of the world could be rich and meaningful through the sense of touch.

My parents realized that I needed plenty of hands-on experience with the everyday objects sighted children take in almost automatically by eye. When I was a toddler my mother made time in her hectic schedule to take me on a walk nearly every afternoon. She showed me split-rail fences, mailboxes, fire hydrants, lawn chairs, birdbaths, and telephone poles. We sat on the ground so I could examine dead leaves, dandelions, toadstools, and acorns. Mom even showed me sidewalks, manhole covers, and curbstones. Nothing was too ordinary for our attention. Everything was interesting and worth inspecting.

Expeditions with my father tended to be more adventurous. Sometimes he took me on walks in the woods, where we crashed through the underbrush, fended off brambles, and got our shoes caked with mud. On other days we explored the construction sites in our suburban development. In half-finished houses I learned that doors and windows fit into frames, and discovered that bathroom pipes descend through holes in the flooring.

My parents had the wisdom to know that for me, as for all children, examining an object once was not enough. Sighted children have endless opportunities to look at trees and fences and bicycles. I needed to reinforce my perception of everyday things by touching them again and again. We stopped on countless walks so I could look at the mailbox—hot to the touch in the summer sun, mounded with snow in February—always the same, yet always new. The inventiveness and unflagging patience of my parents enabled me to create a vast library of tactile images, a mental storehouse of information that has endured and expanded throughout my lifetime. In addition, my parents’ encouragement nourished my natural curiosity. I grew up hungering for firsthand knowledge of the world. I lobbied on my own behalf to touch statues in museums, displays on store counters, and the curios my classmates brought to school for show-and-tell. I trained my friends and teachers not to forget that I needed a hands-on view.

Sight allows for distance learning, and touch is “up close and personal.” But both sight and touch are spatial senses, conveying information about the shape, size, and placement of objects. Touch and sight both show us objects in relation to one another, and convey the principles of cause and effect. Hearing is much more abstract. When a sighted toddler hears an unusual sound she looks around to investigate the cause. A blind child of the same age might hear a whole cacophony of fascinating noises and have no idea what sort of creature or instrument or set of actions is producing the commotion. Sound only becomes meaningful when it is understood within a context, when it is connected to events in the spatial world. Verbal explanations of sounds are wonderful and necessary, but they don’t help much unless the child already has a solid grasp of the basics. Suppose a blind child hears the roar of a bulldozer. His mother explains that a bulldozer is a great big machine that digs a great big giant hole in the ground. Unless the child knows what a machine is, and what digging is, and what a hole is, and has an idea about the relative sizes of things, none of it makes much sense.

In a way, everything I’m saying feels ludicrously obvious. Of course touch is the natural avenue of learning for a child who can’t see visually. But even though you, as a sighted person, grasp this concept intellectually, you may have a hard time taking it in on a real gut level. People who are visually oriented often have trouble moving from a visual frame of reference to a tactile one. As the sighted parent of a blind child, you need to find your way across the psychic divide between visual thinking and what the research psychologist Selma Fraiberg has called “hand thinking.” You need to recognize that hand thinking—forming a mental picture of one’s surroundings through touch—is effective and completely respectable.

To accept hand thinking as fully valid is not as simple as it sounds. It may require you to reflect seriously on your own attitudes toward touch. Touch is generally suspect in our society. It’s the only one of the senses that is consistently prohibited and maligned. To describe the act of searching or exploring with the hands, the English language provides us with the word “grope”—an ugly word freighted with connotations of clumsiness, dullness, and obtuseness.

Touch makes people uncomfortable; it’s a little beyond the sphere of polite society. Touch is associated with breaking things, or even stealing. Children grow up to a steady, relentless drumbeat of “Look, don’t touch! Keep your hands off!” You heard all those warnings, pounding in all those negative messages. Now, for your blind child, you have to uproot those carefully planted fears and prejudices against touch, and think about it in a brand-new way.

Ask yourself some questions. How you feel when your child explores an object with his hands? Are you eager to show him new things? Are you excited by his sense of discovery? Do you sometimes feel frustrated because he takes so long to look at an object tactilely, while a sighted child would take it in at a glance? Are you embarrassed when people stare at your child as he touches a plant, a lamp, a stack of magazines on the table? When he examines a figurine are you on edge, worrying that he might drop it? Do you let him know that you want him to have as many opportunities to touch things as he possibly can? Or do you convey the message that it slows you down to let him stop and look at things, it’s awkward and a bother? One mother of a blind son told me proudly, “We’ve always let him touch things as much as he wants to. Even though it makes us cringe and we want to snatch his hands away, we never stop him.”

The truth is that some people will stare at your child with her exploring hands. Some may frown with disapproval. Sometimes when you ask permission for your child to touch something, that permission will be coldly and unreasonably denied. You will have to be your child’s advocate, working to remove literal barriers so that she can see the things others are looking at.

I want to take a bit of a detour here and respond to a comment that I’ve heard from a number of parents and vision teachers. “Sarah doesn’t like to touch things. When I put her hands on a new toy to show her, she pulls away.” There’s even a term for this in the literature—it’s called “tactile defensiveness.” I believe that the problem stems from the technique called “hand over hand,” in which an adult takes hold of the child’s hand and places it on an object in order to show the object to the child. It seems like a perfectly appropriate way to encourage exploration, but for many children it becomes an issue of control. The adult is grasping the child’s hands, manipulating them, taking charge. Sometimes the adult even moves the child’s hands around on the object in question, trying to point out particular features—all with the best of intentions. I know when people do this to me (it still happens even to adults) I don’t like it. I want to look at things at my own pace, in my own way. I don’t want anyone else to determine where my hands should be.

Instead of bringing the child’s hand to the new toy, try bringing the toy to the child’s hand. With an infant or toddler, touch the child’s hand lightly with the object, tell him what it is, and let him find out about it on his own. As the child learns the pleasures of exploring, he will not need much encouragement. What he will need are time and opportunity.

Sadly, I have met many blind children, teens, and adults whose basic knowledge has been constricted in horrifying ways. I think of a ten-year-old girl, a good student in school, who did not understand how to use a paper fan to fan herself on a hot afternoon. I remember a teenager who had no idea how to use a garden trowel—had no concept of how to dig a hole. I think of a young man who didn’t know that light fixtures are located on the ceiling. When children grow up with such deficiencies in ordinary knowledge, they are at a serious disadvantage in life.

By helping your child explore and learn in her own way, you will give her a lifelong gift. She will know about fans and trowels and light fixtures and tens of thousands of other things around her. She will share in the pool of knowledge that is basic to her peers. That general knowledge base, combined with her desire and ability to seek hands-on experiences, will open countless doors for her as she is growing up. She will be better equipped to take part in games with her friends. She will understand the humor of other children.

She will be able to join in her classmates’ mischief, and to dream up pranks of her own. By knowing the world she will be part of the world, and by being part of the world, she will know the world all the more.

All children want to learn, want to reach out and explore on their own. Blind children explore by touch, and file away memories in tactile images. It’s a different way of seeing, but it is seeing in the widest sense.

Ms. Kent makes her living as a writer and is especially known for her fiction and non-fiction works for children and young adults.

[PHOTO/CAPTION: This blind mentor uses a hand-under-hand approach as he demonstrates the use of a slate and stylus.]

Hand-Over-Hand Guidance: What

Lesson Do We Teach?

by Andrea Story

Independence is emphasized in much of the literature concerning young children who are blind. In the revised edition of Can’t Your Child See? A Guide for Parents of Visually Impaired Children, it states that “The more they [parents] teach the child to function independently in the first three to four years, the less they will have to do later (Scott, Jan, Freeman, 1985).” But how do you “teach” independence to a one-, two-, or three-year-old child without sight? How do you bring the world to the child, and how do you teach skills such as putting on a jacket without making the child dependent on constant prompts and cues? It has often been observed that many children with visual impairments, especially those with additional impairments, are much more passive than their sighted peers. They seem to think of themselves not as doers, but as people who must wait for assistance or a prompt.

Literature on young children with blindness often mentions the fairy godmother syndrome. The child has little information to make the connections of how and why things are appearing and disappearing within his/her world. There is also the concern of imitation: how do you show a child how to eat with a spoon if he/she can’t see how others are doing it? The solution offered for these concerns has often been a hand-over-hand guide technique. The adult holds the back of the child’s hand, the child is guided to the objects to be explored, and guided through the motions of the activity to be learned.

Some have begun to question and reject this method. Dr. Lilli Nielsen of Denmark noticed that children often pulled away when an adult attempted to direct or guide the child’s hands. Lilli writes, “I changed my approach so that guiding or leading the child’s hand was used infrequently. This resulted in the children seldom withdrawing their hands. On the contrary they became more eager to initiate exploration and examine objects, thus improving their ability to grasp and to use their hands in various ways.” Dr. Lilli Nielsen, Educational Approaches for Visually Impaired Children, SIKON, 1992.

Watching Nielsen play with a child, one can see how touching the inside of the child’s hand with an object elicits a grasp quickly and much more independently on the child’s part than forcibly placing the child’s hand on the same objects. Once the child is motivated by the objects, a sound or a nearby vibration can elicit a reach and grasp. The children she has worked with at her presentations often begin to imitate activities such as strumminga stringed instrument, blowing into a harmonica, or dropping balls into a container. The children’s hands were never guided, and they stayed actively engaged for up to an hour. The children’s parents, teachers, and therapists are often amazed at how much children will do for Lilli. A bigger challenge may be the very passive child who moves very little. It will take these children longer to learn, and small steps should be appreciated when they do occur. As Lilli has said, these children do not have time to waste.

Enthused by Nielsen’s results, many who attend her lectures focus on equipment such as the Little Room™, but continue to guide children’s hands. The children’s reaction is most often to pull their hands away, or passively to allow their hands to be manipulated. It is an issue that I still struggle with, for although I have seen some wonderful results in using alternatives, I still have to sit on my own hands sometimes to stop myself from guiding a child’s hand. Even if I do restrain my own hands, I still have to convince educators, therapists, and parents that there are alternatives. Fortunately, some of the parents I’ve worked with have had success with getting their children to hold their own bottle, finger feed, and eventually spoon feed without guiding/controlling their child’s hands. These successes make me question the standard advice given to parents and others about teaching a child without sight.

Hand-over-hand guidance is recommended in most of the literature (or at least there are photos or videos demonstrating it). For a sighted person, it seems an almost instinctual response to guide the child’s hands. Some children protest the guidance, but eventually come to accept it and wait for their turn to explore. How frustrating to have to wait to explore something yourself! One child that I worked with seemed actually to enjoy the hand-over-hand guidance for finger plays and songs, but was quick to push the adult’s hands away if the activity or object was unfamiliar to her. Other children seem much more affected by the technique and become more passive or defensive to touch. These children do not repeat the skill by themselves after being guided. It should be considered that this technique of guiding a child’s hand has been used too often and too quickly. Often it seems that the sighted person forgets, or is unaware of, the unique perspective of those that are blind. Martha Pamperin wrote about this perspective on the AER listserv recently:

“As I, a blind adult, go about getting myself a cup of coffee, I may (1) search the shelf tactually to locate cup and coffee pot, before (2) pouring the coffee. This preliminary search is normal for me, especially if I am at the home of a friend. It does not, however, look normal to the watching friend. Often as not, the friend concludes that I am not able to pour coffee and does it for me, or watches in amazement as I do it myself. Since a blind person, at the beginning of a task, uses a tactual search to substitute for the visual search made by a sighted person, blind people can look unable when they are actually very able indeed.”

Martha compares the sighted method vs. the tactual method of putting on a jacket:

“While the sighted kindergartner (1) sees the arm hole where his arm needs to go, and (2) puts his arm right in, the blind child will probably (1) aim his arm in the general direction of the arm hole, touch the front or back of the jacket, feel around to find the arm hole, and then (2) put his arm in. It is hard to resist directing the arm into the armhole or moving the jacket… The tactual search and the pause for auditory searching may make us look blind, but—surprise, surprise—we are blind. Consider the beauty of gently searching hands, and the wonderful awareness of the listening posture. Wait, let it be.”

Another educator who is searching for alternatives to controlling hands is Barbara Miles, who presented a workshop entitled “Hands: Tools, Sense Organs, Voice” at the 1997 National Conference on Deaf-blindness. Barbara listed this topic among others in her agenda: “Skillful ways of touching and inviting touch, including alternatives to hand-over-hand techniques.” Barbara showed a video in which she gained the trust of a child described as tactually defensive. Barbara used her hands to “invite” and “comment” on objects and activities rather than directing his activity. Her hands followed the child’s very gently and were slightly under the child’s hands rather than over them, thus allowing the child to know that his tactile attention was shared. From this hand-under-hand position, the teacher could gently invite the child to touch an object or person without controlling. This freedom resulted in dramatically increased hand activity.

Consider the O&M technique of the sighted guide. We are taught that the sighted guide does not hold onto the blind person’s arm and pull—that would take all control away from the one being guided. The guiding must be invited and even then it is understood that the one being guided will have a harder time repeating the route by themselves because the guide-ee is dependent on the guide-er.

Hand-over-hand guidance has been promoted as a catchall solution without many questions as to how it is done, when, and why. The challenge remains in our work with young children to explore this issue of teaching, yet still promote independence.

Ms. Story is a teacher of the visually impaired and a member of AER Division 8, Anchorage, Alaska. This article was originally published in The National Newspatch, November 1997.

[PHOTO/CAPTION: Barbara Pierce’s “educated fingers” make the knitting needles fly as she listens attentively in a meeting.]

Educated Fingers

by Barbara Pierce

From the time my daughter Anne was a tiny child she has had a sharp eye for detail. Before she could speak, she could point correctly to where I stored each piece of kitchen equipment. If there was a coin on the sidewalk or a four-leaf clover in the lawn, she would find it.

Since her marriage she has been working in the local jewelry store. Her gift of visual observation is now being trained in very specific ways. Her eyes are being educated to notice and appreciate subtle detail and to draw conclusions from what she sees.

Everyone who is neither blind nor colorblind can distinguish colors, but artists, interior decorators, and house painters notice shades and blend and contrast them with a sureness unmatched by the rest of the population. Similarly, auto mechanics, musicians, and linguists in very different ways have educated their ears to notice subtle differences in pitch and tone that escape the rest of us.

In the same way, while learning to function efficiently, a person who has become blind or a blind child must actually educate his or her fingers to discern nuance and appreciate small variations. As a young child I remember often being confused when I was handed unfamiliar objects. It took time and patience to learn to sort the shapes and make sense of what I was holding.

Take cookie cutters for example. The star, valentine, and Christmas tree were easy to identify. The gingerbread man, Santa Claus, and angel were almost as obvious. Animals were a little trickier. The Easter Bunny and chicken were simple, but I had trouble distinguishing between the dog and the sheep. Then one day some friends handed me a cookie and asked if I could identify the shape. It was unlike anything I had ever handled. All the lines seemed to sweep in one direction, and one portion reminded me vaguely of a robe or skirt. I had not the remotest idea what the thing could be, but I felt great pressure to make a guess, and I was afraid of making what they would consider an absurd mistake. In desperation I said, “a girl airplane.” I knew perfectly well that aircraft did not have gender, but I hoped by making up an answer that was patently absurd to protect myself from being laughed at for making an actual mistake. To my surprise, they burst into delighted laughter and announced that my guess was more or less right. The cookie was a witch flying on a broomstick. I considered myself extremely lucky.

At the same time I recognized that a whole new range of outlines had just opened to me. I was used to identifying the shapes of objects standing still, looking like Christmas stockings or birds or cows. Suddenly I realized that lots of things moved and therefore could be depicted in motion and that I would have to build that concept into my efforts to recognize the shapes of things.

Having a visual knowledge of shape does not, however, translate directly into tactile understanding. Last Christmas my daughter Margy gave me a wooden puzzle of the United States in which each piece is a state. I had never had access to such a map as a child and had always wanted to know more particularly how the various states fit together.

As an elementary school teacher Margy knew where to find the puzzle, and I thoroughly enjoyed learning to assemble it. It took a weekend of intermittent fiddling to be able to identify all the states. After watching me explore the puzzle pieces, Margy decided to try putting it together with her eyes closed. Of course she had the advantage of knowing the map well to begin with, but she was surprised to discover that she could not immediately identify many of the states by touch even though she had a mental image of what she was looking for. She is bright and as the daughter of a blind woman has had lots of tactile experience, so she mastered the skill quickly.

Like all other kinds of education, educating the fingers takes practice. But the more experience they get, the more easily fingers learn. Often you don’t even realize how much your fingers know until they are put to the test.

When my children were small, I came home one day to discover that the babysitter had not kept as close tabs on the three as I could have wished. The labels had systematically been removed from all my canned goods. I have never bothered to label my cans in Braille as I would if I lived alone or with another blind person. I can usually identify the can I want by knowing its size and shaking all the cans of the right dimensions. When I ask a member of the family to confirm my choice, I am pretty frequently confirmed in my choice.

It is one thing to have your guesses confirmed by having someone read a label and quite another to check your guess by opening the lid and living with the consequences. On the whole, however, I did pretty well in this emergency. There was no way to distinguish among the various kinds of condensed cream soups, but pumpkin, kidney beans, and black olives all sound different from each other when shaken.

Folks often assume that blind people depend on always having things returned to their original position in order to manage their lives. There are certainly advantages to being able to glance around a room and see where your toddler has shed her socks or the dog has dropped your slipper. But actually in our household and among my friends I am often the one to find things that have gone missing.

One day I was out with a friend who had dropped her car key into her purse, but when we were ready to leave, she couldn’t find it. She searched and researched her handbag and then got out and began looking on the ground around the car. I picked up her bag and fished out the key in about ten seconds. It had fallen into a letter. As soon as I moved the folded sheet, I knew it was too heavy to be a single piece of paper. When I slipped my fingers across the surface of the letter, I felt the outline of the key. She had been so busy looking for the key that she had not paid attention to what her fingers were telling her about the weight and balance of the paper.

Having educated fingers provides wonderful benefits. When our children were babies, I could get up at night and feed and change them without ever opening my eyes or waking up fully. The disadvantage was, of course, that my husband had a strong argument for giving me the lion’s share of the night duty.

One of the reasons we bought our current home was the fireplace in the dining room. We were assured that it functioned well, but when we tried to build our first fire, we discovered that the damper, which was obviously quite new, would not open. The previous owner had repaired the fireplace and then not used it for years. Debris had sifted down over time and now prevented the damper from swinging open.

I covered the screen with a drop cloth and reached through with one hand. Working back-handed, I forced the damper open enough to slip my fingers through. Then I began flicking bits of ash, brick, and bird’s nest out through the slit and eventually, as the damper opened wider, through the widening crack on the hinge side. It was hard work, and I banged up the backs of my hands and fingers, but I was eventually successful in freeing the damper so that we could use the fireplace.

Even though I had a little vision when my mother taught me to iron, I could not see the wrinkles in the pieces I was working on. From the first I had to learn how to smooth a panel of the garment and work close to the iron without burning myself. Though most sighted people don’t believe it, this is actually quite easy to do. Now my favorite time to iron during the summer is late in the evening when a breeze blows through the windows of the converted sleeping porch that is my laundry room. I can read a talking cassette book in the darkness and iron while the birds go to bed and the crickets begin their chorus.

Our neighbors seem finally to have adjusted to the fact that I often weed the lawn and lower beds beginning at twilight. At first they questioned me about what I was doing sitting in the middle of my lawn in the dark and listening to a cassette book. Buckets of dandelions and ground ivy have convinced them that I actually am accomplishing something useful out there in the cool of the evening.

I was not always so comfortable letting others observe how I do things. Society exerts lots of pressure on blind people to do things like everybody else. It was members of the National Federation of the Blind, at ease with who they were and how they did things, who taught me that it was far better to get things done efficiently than to look like everybody else while I did nothing. This attitude makes eminently good sense, but it helps to know that members of the general public are now reading books like this one and learning why I search for things with my educated fingers and, as often as not, find them.

Barbara Pierce is the wife of a college professor, the mother of three children, the editor of the leading magazine in the blindness field, and the President of the National Federation of the Blind of Ohio.

Chapter 5:

Literacy Is For Everyone

Pre-Reading Activities for Blind Preschoolers

by Ruby Ryles, Ph.D.

Sometimes blind and visually impaired children come to preschool or kindergarten with less than average strength in their hands and fingers. This is the age that pre-reading and reading and writing activities should formally begin for children. Even if your child is not a future tactile reader, it is wise to spend time playing with him or her to develop arm, hand, and finger strength. Below is a partial list of activities you and your child might enjoy while doing just this. As you play you will find other activities which use these muscles. The goal is for your child to do the activity independently. But above all, have fun!

Arm and Hand Strength:

Weight-bearing activities such as: playing as a human wheelbarrow; creeping up hills or over obstacles; pushing a wagon, weighted box, or loaded sandbox trucks; and doing yoga positions: cat, cobra.

Grip and Finger Strength: tearing paper and fabrics; squeezing water out of sponges, washcloths; squeezing bulb syringe medicine droppers; cutting with scissors on different textures and fabrics; using a paper-hole punch; playing with Play-Doh and bread dough; playing with manipulative toys—Legos®, TinkerToy® sets, snapblocks, pop beads; playing rope pull, tug of war; holding on to rope or hoop while being pulled on scooter; using clothespins; using tools—hammer, saw, screwdriver, nuts and bolts; using tongs or tweezers to pick up small objects; playing with magnets; opening jars and containers with lids; turning knobs or dials, pushing buttons; typing on manual typewriter; bowling; squirting water from empty soap bottle or squirt gun; “water painting” with large brush; doing simple cooking activities—stirring batters; using garlic press, potato masher, juicer, hand mixer, sifter, pouring water from one container to another; and using cookie cutters with Play-Doh or cookie dough; playing wash day—wringing out water from cloth and hanging on clothesline with clothespins; using stick or spoon handle to draw in wet sand; solving puzzles made from rubber; placing clay into plastic lid, patting smooth, and drawing pictures on it with pencil or stick; crumpling paper (vary the weight) and tossing to a target; tying knots (vary weight and density of cord); operating a stapler; opening rubber bands with one hand and placing on a tube or dowel; popping packing bubbles; and using easy grip pegs and pegboards.

This list of activities is provided with the cooperation of Peggy Jensen. Occupational Therapist, Marysville, Washington.

Your Child’s Right to Read

by Carol Castellano

A father reports that his daughter had to be placed in a Resource Room instead of the regular classroom during the school year. The child has no learning problems or delays; she simply cannot keep up with the class reading on a closed circuit television.

“Braille is a tremendous undertaking, very complicated and difficult to learn,” a blindness professional tells one mom. “Let your son use his vision for as long as he has it.”

“My child isn’t blind. She doesn’t need Braille. She can use a closed circuit television (CCTV) to read.” But when the partially sighted youngster reaches second grade, her mother realizes the child cannot read at all. By the time Braille instruction is finally initiated, the student is lagging far behind her classmates. “I had been so happy that my daughter ‘wasn’t blind.’ I now see that Braille is not a curse of blindness, but a tool of literacy and freedom.” the mom says.

What do these scenarios have in common? A negative attitude that Braille is the medium of last resort and the misconception that Braille is not for youngsters who have some eyesight. The reality is that Braille is a valuable tool that is the key for both totally blind and partially sighted people to full literacy and equality in the classroom. Not every partially sighted person needs Braille. But there are far too many students with partial vision for whom Braille would be a sensible reading option, who are denied instruction in this most beneficial medium.

There is good news. An important change was made in 1997 to the Individuals with

Disabilities Education Act (IDEA), the federal law that guarantees a “free and appropriate education” to children with disabilities. The change says:

The IEP Team shall…in the case of a child who is blind or visually impaired, provide for instruction in Braille and the use of Braille unless the IEP Team determines, after an evaluation of the child’s reading and writing skills, needs, and appropriate reading and writing media (including an evaluation of the child’s future needs for instruction in Braille or the use of Braille), that instruction in Braille or the use of Braille is not appropriate for the child. (Section 614(d)(3)(B)(iii))

What does this actually mean? It means, first of all, that the school must provide Braille. Secondly, it means that four specific areas must be examined before Braille can be ruled out. The IEP team, which includes the parent(s), must evaluate

1.  the child’s present reading and writing skills;

2.  his/her reading and writing needs;

3.  the appropriate reading and writing media (which could end up being Braille, print, or both Braille and print); and

4.  any need the child might have in the future for Braille.

Only if the results of these evaluations show that the child does not presently need Braille and will not need Braille in the future, can Braille be ruled out.

Decisions about teaching Braille have often been made on a single basis—whether the child had enough vision to see any print. Now, it is no longer legal to say that just because a child can see a little, that he/she cannot have Braille. The teaching of Braille was often delayed until the child began falling behind in school. Now, families and teachers should not have to watch their children or students fail before an appropriate literacy tool is provided. Decisions about teaching Braille were often full of emotion—“You’re making the child blind.” Now decisions about Braille will be based on an objective examination of the child’s present and future need for the medium. Braille used to be the medium of last resort. Braille will now be the medium of first choice. This change in the law has the potential to make an enormously positive difference in the lives of blind children.

Many of us have heard Braille spoken about as very difficult and burdensome to learn. We have heard that partially sighted students don’t want to learn Braille or that they will read it with their eyes anyway. But it’s all in the presentation. If Braille is presented in a positive light as the medium of choice for full literacy, if the methods of teaching it are engaging and appropriate, if children are taught to pair their remaining vision with their sense of touch, then Braille learning will be undertaken with the same excitement and interest that a child might have for any other subject or skill. And it will be mastered with a sense of pleasure and accomplishment.

The fact is that Braille is a wonderful literacy tool, whether it is used exclusively or along with print. It enables the child to read fast and without fatigue, to keep up with the class, to take notes and read them back. Braille opens the world of the analysis of literature and of higher math and the sciences. Braille levels the playing field, enables our children to compete on equal terms with their peers, and to have access to all aspects of a good education. This law is a great victory for blind and visually impaired children, for it ensures that they will now be given the tools they need for full literacy, for a complete education, and for a bright tomorrow.

Research Study: Early Braille Education Vital

by Ruby Ryles, Ph.D.

An exhaustive study has cast aside some erroneous stereotypes while underscoring the importance of Braille education at an early age. The study has revealed that literacy rates of blind high school students who began their Braille education at an early age are consistent with those of their sighted peers. The study further disclosed that legally blind children who received infrequent or no Braille training, or who began their Braille education later in life, exhibit noticeably lower literacy rates.

The study was conducted by Ruby Ryles, Ph.D., founding coordinator of the master’s

program in Orientation and Mobility at Louisiana Tech University/Louisiana Center for the Blind. Ryles performed the study for her University of Washington doctoral dissertation in special education, titled “Relationship of Reading Medium to Literacy Skills of High School Students Who Are Visually Impaired.” Results from that and a preliminary study suggest that partially sighted children may be at greater risk of literacy deficiencies than children who are totally blind. The study was intended to establish correlations between present literacy rates and the early reading education of high school students from 45 cities, towns, and rural communities in 11 eastern and southern states. Of 60 students in the study, 45 were legally blind from birth, had no other disabilities, spoke English as a first language, were of average intelligence, and attended public rather than residential schools.

The study also included a comparative group of 15 sighted students attending the same schools as the legally blind subjects. The 45 legally blind students were divided into three groups of 15 students each, corresponding with the initiation and consistency of their Braille instruction: Early Braille—students who received Braille instruction four to five days per week while in the first, second, and third grades. Infrequent Braille—students who received Braille instruction fewer than four days per week during the first three grades; Non-Braille—legally blind students who received no instruction in reading Braille, instead using print material and optical aids.

Ryles administered comprehension, vocabulary, and other subtests of the Stanford Achievement Test and the Woodcock Johnson R (revised) assessment tests. In comprehension tests, there was no significant difference between the mean scores of the sighted students and the group of blind students who received early frequent instruction in Braille. Nor was there a significant difference between the mean scores of the infrequent Braille group and the non-Braille group on the two comprehension tests. However, the students who received instruction in Braille fewer than four days a week during the first three grades of school (infrequent Braille group) and the non-Braille group posted mean scores on both tests significantly lower than those of the sighted and early Braille groups.

In vocabulary, early Braille readers outperformed sighted students by a 5 percent margin on the Stanford test and nearly matched their sighted classmates on the Woodcock Johnson R test. The infrequent Braille learners, producing a mean score of 45 percent, registered significantly below the early Braille and sighted groups on the Stanford test. Legally blind students who received no Braille instruction posted a mean score 6 percentage points lower than the infrequent Braille group on the same test. The infrequent and non-Braille groups also scored significantly lower than the early Braille and sighted groups on the Woodcock Johnson R vocabulary test.

Spelling, punctuation, and capitalization scores shattered stereotypes. In the capitalization and punctuation portion of the Woodcock Johnson R test, early Braille readers

produced a mean score that was 7 percentage points higher than their sighted peers, 25

percentage points higher than the infrequent Braille group, and 42 percentage points higher than their legally blind peers in the non-Braille group. In the spelling portion of the Woodcock Johnson R test, early Braille learners averaged 1 percent point higher than fully sighted readers, 32 percentage points higher than infrequent Braille learning, and 38 percentage points higher than the non-Braille group.

Before beginning work on the project, Ryles conducted a preliminary study in the state of Washington evaluating the correlation between adult literacy skills and employment. There, she studied 74 adults who were born legally blind and were patrons of the Library for the Blind. Ryles discovered that 44 percent of the study participants who had learned to read in Braille were unemployed, while those who had learned to read using print had a 77 percent unemployment rate. Those results prompted her to conduct an in-depth study exploring the childhood reading education of legally blind high school kids.

The two studies led Ryles to an inescapable conclusion: “Low-vision kids need to be taught Braille,” she asserts. “Early Braille education is crucial to literacy, and literacy is crucial to employment.”

The article above first appeared in the Spring, 1998, edition of HumanWare’s publication, Star Student. It was later reprinted in Future Reflections.

The Bridge to Braille

Reading and School Success for the Young Blind Child

By Carol Castellano and Dawn Kosman

Illustrated by Lynne Cucco

The Bridge to Braille is a practical, step-by-step guide that shows parents and teachers how to help blind children progress from early literacy experiences all the way to full participation in the classroom.  This book demystifies the education of blind children and enables parents and teachers to give ordinary help with spelling, homework, reports, and projects to children who happen to be blind.  Topics included in the book:

Adapting Materials            

Beginning Braille Reading                 

Doing Math in Braille

A Quick Braille Lesson

Braille Writing in the Classroom

Resources

Using Technology

Independence in the Classroom

About Braille Books

“Now I understand what to do to get my son off to a good start in school.  Parents need this information right from the beginning, when their blind child is a baby.”

- Amy Kaiser, Parent of a blind child

“A much-needed adjunct to the information shared by a busy Braille teacher...The Bridge to Braille should be in the hands of every teacher who is going to have a blind student in class!”

- Debbie DeHaven, First Grade Teacher

The Bridge to Braille is available from:

National Organization of Parents of Blind Children

Order Form

Name ____________________________________ Phone (        ) __________________

Address_________________________________________________________________

                 Number and Street                              City                  State               Zip

The Bridge to Braille  Quantity ____  @12.00 + $5.00 (S&H) = _______ (Total Due)

Make check or money order payable to NFB and mail with this form to:

Materials Center, National Center for the Blind

1800 Johnson Street, Baltimore, MD  21230-4998

Phone: (410) 659-9314       Email:  nfbstore@nfb.org     Web site: www.nfb.org

[PHOTO/CAPTION: Megan Palmer]

Why Megan is Learning Braille

by Marla Palmer

The IEP Team shall—in the case of a child who is blind or visually impaired, provide for instruction in Braille and the use of Braille unless the IEP Team determines, after an evaluation of the child’s reading and writing skills, needs, and appropriate reading and writing media (including an evaluation of the child’s future needs for instruction in Braille or the use of Braille), that instruction in Braille or the use of Braille is not appropriate for the child.

Individuals with Disabilities Education Act (IDEA)

Public Law 105-17

Section 614(d)(3)(B)(iii)

A few days ago I peeked in on a Braille party that my daughter was attending. The students were putting on a puppet show that was entitled, “Why I am learning Braille.” I heard the innocent but profound answers, “I am learning Braille because I am blind.” Another response was, “…so I can read.” When the spotlight hit my daughter she said,

“I am learning Braille so I don’t have to learn it when I am big.” I couldn’t help but chuckle. I am sure there have been numerous times when Megan has overheard her blind adult mentors, including her mom’s cousin, exclaim how they wished they had learned Braille when they were younger!

When Megan was born and we received the news that she was “visually impaired,” “legally blind,” “partially sighted”—we weren’t sure what to expect for her future. Doctors and educators were positive that she would have a “normal” life with few adaptations. I vividly remember when Megan’s eye doctor exclaimed, “Megan will be just fine, and she won’t need many services like Braille.”

With that in mind I couldn’t understand why my cousin, Kris Cox repeatedly called me to share her personal experiences with the National Federation of the Blind (NFB). She kept asking that annoying question, “So Marla, are you going to have Megan learn Braille?” I thought I was doing a good job at explaining why I didn’t feel it was necessary, but for some reason (which I now understand) Kris would politely disagree. Kris grew up as a child with low-vision and was not given the opportunity to learn Braille. She expressed how much easier it would have been to learn Braille then (instead of now, as an adult) and gave examples of how Braille can be an effective literacy tool.

Kris invited us to our first National Convention of the NFB held in Dallas, Texas. Frankly we weren’t sure why we were attending a convention for “the blind” when our child was “visually impaired,” “legally blind,” “partially sighted.” The convention and those we met there created some defining moments for us. My husband and I discovered that Megan has been blind all along (smile) and most importantly that it’s okay to be blind. Our daughter could become a successful, contributing member to society if she could get the proper training and tools. And one of those tools was Braille. At that time, Megan was only eighteen-months-old. It’s hard to believe that five years later she is six-years-old and approaching first grade. Here’s part of our story from that time to now:

Early Intervention

Some parents that have children with partial vision oftentimes don’t take advantage of the early intervention programs that are available to them. Megan has received services since she was an infant. It was a great networking tool with professionals in the field and with other parents. Because it was a zero-to-three program, there were written individual and family goals. From day one, we had pre-Braille goals written into our plans.

This was actually suggested by our Parent Infant Program advisor. She said it serves several purposes:

1. It’s never too early to start pre-Braille skills.

2. When it came time to write your child’s first IEP, there should be no question from the team that you, as parents, want your low-vision child to learn Braille. It had been documented from day one.

Preschool

Upon the transition from Early Intervention to Preschool we were given three educational options for Megan: enroll her in the Utah School for the Blind, choose the Davis County District Preschool, or select a private preschool of our choice. After careful consideration, we opted to mainstream Megan in the district preschool program. I would not consider Megan’s first year of preschool a huge success when it came to Braille services. The preschool teacher had wonderful talents and skills, but was very uncomfortable with having a low-vision child in her class. She would often forget how to make simple adaptations and seemed overwhelmed when given advice. Megan received consultant services from a teacher of the visually impaired two times a month (it would have been once a month if we had chosen a private preschool). However, the consultant had to spend all of her time concentrating on the preschool teacher rather than working on the IEP goals with Megan.

The next year we searched high and low in our district and found a wonderful teacher who truly understood the power of inclusion, was comfortable with working with children that needed adaptations, and was willing to be an integral part of the IEP team. We had overcome a huge hurdle. Now, the consultant for the visually impaired could come in and work one-on-one with Megan to help her achieve her Braille goals.

I had high expectations of the consultant that was visiting my child a whopping two times a month. I quickly learned that in order for Megan to effectively have a head start in Braille, we had to have daily Braille activities at home. I became good friends with Megan’s Braille consultant and we agreed to work together. The two concepts we concentrated on were having a good understanding of the Braille cell, and familiarity with the Braillewriter. After Megan was introduced to these concepts we were able to work on them approximately fifteen minutes per day at home.

We concentrated on using the Braillewriter to build finger strength, to type the Braille letters she also knew how to write in print, and to pretend to write stories. (In other words, she “scribbled” pretend stories with the Braillewriter just as sighted children scribble stories with a pencil.) Megan is a visual learner and she liked to see the shape of the Braille letter as well as feel it. She memorized the Braille alphabet by sight and by touch. Megan had no problem wearing her “blinders” as she understood at a young age the importance of learning Braille tactually. I think it helped that everyone—her teacher of the visually impaired, her regular teacher, and her family—had a positive attitude about using the sleepshades (blindfolds).

We were able to find some wooden Braille tiles (about one-and-a-half inches wide, two-and-a-half inches high, and one-half inch thick) that had large Braille knobs on one side and large print on the other (Note: Mr. Arnold Dunn in Florida makes these and donates them to families or institutions). One afternoon we found a small box and Megan decorated it the way she wanted. We cut two holes in the side where her hands could fit in. After practicing learning several letters, we would mix the tiles up and put them in the box. Megan would slide her hands through the holes, feel for the different tiles, and tell me which letters they were. This is still a favorite game.

By the end of her third year in preschool Megan could read and type her name in Braille. She had memorized all the letters in Braille (tactually and visually) and could also tell which dot sequence formed which letter. During the summer before her kindergarten year, her preschool consultant for the visually impaired checked out a copy of The Mangold Developmental Program of Tactile Perception and Braille Letter Recognition (Exceptional Teaching Aids, California) for us to use at home with Megan. I feel Mangold was one of the best teaching tools available to us. The workbook was very easy for a parent with little Braille background to use and to follow.

Kindergarten

When Megan entered kindergarten she was seventy percent finished with the Mangold curriculum. We felt that it was necessary to have Braille instruction every day for forty-five minutes, and the IEP team agreed. We had a great rapport with Megan’s itinerant Braille teacher with whom we communicated on a daily basis. Megan had a Braille homework folder in which the teacher recorded what Megan practiced that day and what she—the teacher—wanted Megan to practice for homework. Megan was responsible for helping me record her homework and report back to the teacher each day. The teacher had a reward system for homework turned in on time, for good work, etc. This was a great motivator for Megan.

Megan finished Mangold during her kindergarten school year and was introduced to the Patterns Braille Reading Series from the American Printing House for the Blind (APH), which we are continuing with this summer. This series has helped her transition from uncontracted to contracted Braille. She is a dual-reader, learning and becoming efficient in both print and Braille literacy skills. Megan’s latest progress report states that she is on the same reading level in Braille as she is in print. I don’t know what her future holds for her visually, but I do know this: she will be prepared for it. She will never have to struggle to learn Braille as an adult like my cousin Kris.

In summary, never settle for less than your child needs. Have the attitude that each transition in a child’s life is important. Early intervention and preschool CAN and SHOULD be used to concentrate on preliteracy skills and Braille. Of course, each child is different. Be flexible and be aware of how they learn and use that to their advantage. Be involved and work with your child at home. Be a part of the working team, not just a cheerleader. If you have high expectations for your child’s teacher, have high expectations for yourself, too, and be willing to do the necessary work at home. And, yes, a child with partial vision can be successful at learning both print and Braille.

Marla Palmer, a resident of Utah, is a member of the board of the National Organization of Parents of Blind Children. She and her husband, Mike, have three children: Lauren, Adam, and Megan.

Chapter 6:

Formal Education

[PHOTO/CAPTION: Dr. Fredric Schroeder]

Expectations: The Critical Factor in the Education of Blind Children

by Fredric K. Schroeder, Ph.D.

The following address was delivered at the eighth International Conference on Blind and Visually Impaired Children in Edmonton, Alberta, Canada.

Perhaps no issue has been more hotly debated than the question of which educational placement or array of services represents the best alternative for blind children. We tend to view this debate as a contemporary issue—full inclusion versus residential placement. Yet this debate is not new in character or substance. In 1865 at the laying of the cornerstone of the New York State Institution for the Blind at Batavia, Samuel Gridley Howe stated:

I am constantly applied to by teachers to know how to proceed with a blind child; and I always encourage them to keep it at home, and let it go to the common school as long as possible. (1866, in Blindness 1865, p. 185)

While Howe suggests that public school education is preferable to residential placement, his lifetime devotion to establishing schools for the blind reflects his understanding that neither system is wholly adequate to meet the educational needs of blind children. Perhaps the real difficulty in the debate stems from the complexity of its issues. Residential schools have certain natural advantages in designing and implementing programs for blind children. With the students concentrated in one place, curricula can be adapted and special media prepared, allowing for instruction comparable to that available to sighted children. Residential schools offer Braille libraries and are generally noted for their athletics programs. Additionally, by being in an environment with other blind children, the blind child has better prospects for social interaction than is often the case in public schools.

Alternatively, inclusionists put forward the compelling argument that segregation from society fosters separation and isolation. They believe that blind and other disabled children are part of a diverse society and should not be separated from it. They assert that our educational system can and must be available to all and must adapt itself to varying needs rather than excluding those with differences.

There is a tendency to view the individual placement as responsible for the blind child’s positive or negative experience. Yet the quality of the individual child’s experience is not fully explained by the placement model itself. Children going through the very same program frequently have dramatically different feelings about the education they received. Individual children bring with them individual human characteristics. Some adjust readily to change, while others have great difficulty. In other words, the particular placement is only part of the equation.

I believe that the debate over residential versus integrated placement asks the wrong question. There is no one structure or particular type of program placement that is best for blind children. All models and all systems will inevitably succeed with some children and fail with others. What is needed, therefore, is not the refinement or fine tuning of this system or that. Instead, all systems must be premised on a fundamental belief in the ability of blind children to compete—each system must begin with this belief and translate it into expectations.

Without a clear vision of what can be achieved by blind children, no reasonable planning can take place. Without certain fundamental values, no overarching philosophy can emerge. Since its founding the National Federation of the Blind has embodied a clear philosophy of blindness rooted in the basic belief that the blind can compete on terms of equality with the sighted. Marc Maurer, President of the Federation, has stated:

In 1940 we organized to speak for ourselves through the National Federation of the Blind We have replaced the ancient terms of negativism with a new language of hope, and society has increasingly come to accept us for what we are—normal people with normal aspirations and normal abilities. (1990, in Walking Alone and Marching

Together, p. 718)

I administered a public school program for five years. What distinguished our program was our fundamental belief in blind children. When I speak of a fundamental belief in blind children, I mean just that—a shared personal conviction that our children are inherently normal and capable of assuming an active role in society, a belief that they can grow up and marry and have jobs and raise families and live a normal life, a belief that they will have strengths and weaknesses and, if encouraged to build on those strengths, can excel, establishing for themselves a place of real equality.

It is important to distinguish what I call a fundamental belief in the ability of blind children from the less-defined, generalized belief which exists throughout our educational system. Certainly teachers as a whole seek to train and encourage their students to learn and achieve. What separates a fundamental belief in the ability of blind children from a generalized belief is the matter of clear expectations.

In the program I administered we strove to put into practice our fundamental belief in blind children. We believed that, given the right training, our students could compete in all subject areas on terms of real equality. We were not satisfied with the methods we used to teach the students unless they met this criterion. For this reason we concentrated intensively on the basic skills needed by blind children.

We instructed them in Braille reading and writing, cane travel, typing, handwriting, and use of the abacus. These core skills represented the natural expression of our philosophy of blindness. We believed that our children could compete and therefore gave them the tools necessary to put that belief into action. By giving them skills and holding high expectations for them, we enabled our students to develop the self-confidence to participate fully, both socially and academically.

We held a fundamental belief in the ability of our students and translated that belief into action. We believed that our children could compete and gave them the skills necessary to make this belief a reality. When they were given the skills to meet our expectations, they developed confidence and learned to achieve. By succeeding and believing in themselves, they began the process of internalizing our belief in them. In time our expectations of them became their expectations of themselves; our fundamental belief in their inherent normalcy became their own.

What blind children lack is not access to services, but access to high expectations.

Society holds only minimal expectations for blind people. Consequently the blind child is rewarded for virtually any level of performance. Even the most forward-looking people rarely hold more than tenuous and uncertain expectations for the blind. It is not surprising, therefore, that blind children lack a clear image of their own potential. To develop a real sense of their own ability, blind children must be in an environment with clearly defined expectations.

When I began administering a public school program, I found a lack of clear expectations for blind children. The staff certainly had good intentions for their students and were doing their best to train and motivate them. Yet they had a generalized rather than fundamental belief in their students. None of the children used canes, and therefore they were at a real disadvantage in getting around the school. They had been taught to trail walls and use their feet to find steps. Blind children were allowed to start out five minutes early for recess so that they could get to the playground before the other children. By and large, partially sighted children were responsible for leading the totally blind ones. At lunch time they went early to the cafeteria and sat together while the cafeteria workers brought them their trays. They were integrated primarily into non-academic subjects, except for those students who had enough vision to use print. This program was not, and is not, uncommon. Personnel in these programs did not have bad motives, were not poorly trained, and were not lazy. In fact, they had the very best of intentions. In other words, they had a generalized rather than fundamental belief in their students.

In restructuring our program, we began by integrating a new philosophy about blindness. Our fundamental belief in blind people expressed itself through high expectations.

We believed that, if blind children were to compete, we must first demonstrate (through our actions) our belief in their ability. We stopped the practice of having partially-sighted children lead the totally blind. Rather we taught children to use white canes and encouraged them to walk quickly and confidently. Wall-trailing went by the wayside. We stopped releasing our children early for recess, believing that, if we treated them as though they were vulnerable, they would learn to act as though they were vulnerable and would begin to believe it.

School personnel had some initial difficulty adjusting to these changes. I remember the principal’s telling me that we needed to build a sidewalk leading from the main building to the swings. She said that our students liked to swing during recess; but, since we no longer let them go early, the swings were all taken by the time they arrived. She thought a sidewalk would help them find the swings more quickly. When I asked how the children were currently getting to the swings, she told me that they had been taught to trail the fence around the perimeter of the playground. At the point closest to the swings, a rag had been tied into the chain-link fence. When they found the rag, the children were to stand with their backs to the fence and walk straight out to find the swings. No wonder our children were always the last to arrive at the swings.

I told her that what the children needed was not a sidewalk across the playground, but more practice orienting themselves in large open spaces. When leaving the building, the children should head out across the playground in the general direction of the swings. Over time they would learn to recognize certain natural landmarks such as other playground equipment and slopes in the ground. With practice they would get better at judging the distance and direction to travel. Additionally, since swings are a high-interest activity stimulating much competition, our students would have to be quick if they were to nab a swing.

The principal was apprehensive at the prospect of a half dozen blind children running at top speed with their canes in a crowd of three hundred youngsters. What she had not considered was that, when the recess bell rang, there were three hundred children running at top speed, but they were all running in the same direction—from the building onto the playground. Expecting that the blind children in our program could compete on terms of real equality and giving them the tools to make it possible, we found that they met and surpassed our expectations. When the blind children in our program first learned to use canes, we did not teach them to run. They taught themselves to run because they felt a compelling need to get to the swings first. When they were released early from class, they walked slowly and carefully—those with some sight helping those with none. They had no need to run and no belief that they could. When they learned to use canes and went to recess with everyone else, they found a need to run and hence learned to do so.

But this was only the beginning. Sometimes they weren’t fast enough. Sometimes the swings were all taken when they got there. Consequently, they looked for other things to do. They found and used other pieces of playground equipment. They met other children and made new friends. They began to believe that they were normal children; acted accordingly; and, as a result, were viewed by others as normal.

We also stopped the practice of letting the children go early to lunch. We taught them how to get in line with the other children and use their canes (gently) to keep track of the person in front of them. We taught them how to carry a tray while using a cane and how to find an empty seat. Finally, we taught them to bus their own trays on their way out of the lunchroom. By being part of the crowd, they naturally ended by sitting with a variety of students, which contributed to expanded circles of friends.

In academic areas we applied the same fundamental belief in the basic equality of our students. When I was in graduate school, the concept of social integration was very popular. The basic concept was that placing blind children in an age-appropriate setting, we were assured, would facilitate social integration. Yet this concept was incompatible with our overall philosophy. If we believed that blind children were normal and that, given proper training, they could compete on terms of equality, then social integration would send a contradictory message. If blind children are in classrooms and unable to perform the same work as the other students, how can they learn to believe that they are equal?

We determined, therefore, to concentrate first on the skills of blindness and mainstream children only in those areas in which their skills allowed them to function competitively. This meant that our children received intensive training in Braille reading and writing, as well as training in typing, handwriting, use of the abacus, and of course cane travel. As children were able to read at grade level, they were integrated into language arts and social studies.

As they became skilled in the use of the abacus, they were integrated into math.

Consequently, they were able to perform competitively and thereby internalize a vision of themselves as inherently normal.

Let me reiterate that the key was not the educational placement; the critical element was our belief in their essential normalcy and the tangible demonstration of our belief through our actions. By believing in blind children and having high expectations for them, we enabled them consistently to reach and surpass our expectations.

One day one of our students came to his teacher to complain that his friends had begun playing tag during recess. When playing tag, one child is “it,” and his or her objective is to tag or touch another child, thereby making the other child “it.” Since none of the children wishes to be “it,” the game moves at a fast pace. The problem for a blind child is that it is difficult to know who “it” is at any given moment and, more important, where “it” is. This blind child complained that, since he didn’t know where “it” was, he didn’t know which way to run and thus spent much of the game being “it.”

We had spent considerable time and energy convincing our children that they were normal and could compete on terms of equality. We had taught them through our words and deeds that, given the right training, they could function competitively with their sighted peers. We now had a seven-year-old putting our philosophy to the test. In the game of tag he didn’t feel very equal, yet he had an expectation that he was capable of full participation, so he came to us in the absolute certainty that a technique must exist which would allow him to compete. After considerable soul-searching, we determined to talk to the youngster and explain to him that the world had been constructed largely by the sighted with sight in mind, and after all there are some things that the blind cannot do (such as driving) because the activity itself is premised on the ability of the driver to see. We hoped we could explain to him that tag was like driving—constructed by the sighted for the sighted and that it did not mean that he was inferior. We hoped that we could explain, in a way that a seven-year-old would understand, that the blind were not less capable merely because there were some activities in which sight was an overwhelming advantage.

In the meantime this young fellow had grown tired of waiting for us to come up with a solution. He believed he was as capable as anyone else and believed that full participation was a product of having or thinking up the right technique. He realized he could not see, but, rather than feeling bad about it, he had learned to meet the situation head-on. Soon thereafter, before we had a chance to talk with him, he came to school with a small glass jar. At recess he put a few pebbles in it and replaced the lid. He told his friends that, when they were playing tag, whoever was “it” had to shake the jar; and, if he or she did not, the tag did not count. He still did not know who “it” was, but at least he knew where “it” was.

All of us with our master’s degrees and years of experience were prepared to sell a seven-year-old blind child short—not out of malice, poor training, or even lack of imagination. Presumably as a group we had at least average powers of creativity. What limited us was a subtle, almost unrecognizable, internalization of society’s diminished view of blindness. Even though we actively worked to promote a positive philosophy of blindness, we were subject to the negative conditioning of society. No matter how hard we fought it, we were still ready to accept partial participation while intellectually wishing to believe in full participation.

This student solved his own problem primarily because he believed in himself. The critical factor was his own expectation and fundamental belief in himself as a blind person. He believed that he was equal and acted accordingly. He would not settle for a lesser role but thought and questioned and tried until he had an answer. Our challenge is to develop a clear vision in ourselves of what we believe about blindness. We must replace our generalized belief in blind children with a fundamental belief. This represents an overarching philosophy guiding our programs but, more important, guiding our expectations. If we have a clear vision of what blind children can achieve, they will invariably reach and surpass our highest expectations for them.

Inevitably our programs and services develop from our beliefs, explicitly and implicitly reflecting our expectations. The real problem with today’s programs for blind children is their lack of an effective philosophy. Education of the blind has become trapped by its own thinking, which has resulted in a system in which children are encouraged to progress from where they are, without a vision of where we want them to be. We have become complacent, using progress as our measure of success. We have taken this lack of clear vision and embraced it as a virtue. We have become the champions of individualized programs without clearly defined expectations. Yet doing better today than yesterday is simply not good enough. By using progress as the measure of success, we mislead ourselves into believing that our educational systems are working effectively. The real problem of a generalized belief in blind people is that it lacks definition. The progress measure of success rewards forward movement irrespective of whether it is constructive.

Today’s Braille literacy problem did not emerge from a negative view of blindness, but rather from a lack of any specific view at all. If a child has some sight and is struggling to read print and if he or she begins to read better by using a CCTV or stronger magnifier, the goal of progress is achieved. The child is reading better, which is of course what we want. This satisfies our generalized belief in blind children. The progress standard is not so much wrong as incomplete. A child’s making progress is good, but only if it is progress toward a worthy goal, premised on a fundamental belief in the ability of blind people to compete. I believe that blind children are fundamentally normal, so I expect that they can become literate. Since I believe that they are normal, my expectation for their literacy is that they will read and write like their sighted peers. For this reason I am not satisfied by a child’s progressing from reading ten words per minute to twenty or thirty words per minute if this is the best that he or she will achieve, given a particular medium.

Progress is not enough. It must be coupled with expectation. If a child is trained to read Braille knowing that it is reasonable to expect that child will learn to read at a rate comparable to that of his or her sighted peers, then progress takes on a new and positive dimension. Progress in response to substantive expectation is progress worth applauding. Progress from a position of inferiority to a position of less inferiority, without the prospect of full participation, is not only insufficient but damaging because it erroneously teaches the child that, due to blindness, he or she is less capable. Dr. Kenneth Jernigan, President Emeritus of the National Federation of the Blind, expressed it best:

We have learned that it is not our blindness which has put us down and kept us out, but what we and others have thought about our blindness. (1990, reprinted in Walking Alone and Marching Together, p. 428)

As educators, teacher trainers, and parents we must actively work toward developing a strong and positive conception of blindness within ourselves. This can only be accomplished by spending time with blind adults who can help us reshape and redefine our expectations. Ruby Ryles, a nationally recognized teacher of blind children in the United States, pointed out:

The average VI teacher [teacher of blind children] has had little or no contact with competent blind adults and therefore does not imagine, cannot imagine, the tragic results of the omission of basic skill training. (June, 1989, in the Braille Monitor, p. 308)

We must strive to replace our generalized beliefs with fundamental beliefs in the capacity of blind people. With these fundamental beliefs our philosophy of blindness will guide us intuitively to do what is right. Through our philosophy we will naturally hold high expectations for our students and replace undirected progress with that which is goal-driven. We will automatically know whether a decision or strategy is the right one by the degree to which it accomplishes the objective of full participation for the child.

But, most important, a personal fundamental belief in the ability of blind people will result in the passing on of this belief to our children. If we believe in them and demonstrate that belief in all that we do, they too will learn to believe in themselves, internalizing our expectations. The skills we teach are not a complete package, but a starting point. If our children learn to believe in themselves, they will draw from these skills, applying them in new ways and in new situations. They will build on this foundation and integrate themselves into society. No master’s-level educator will have to teach them the correct method for playing tag. By believing in themselves and assuming that they can function competitively, they will automatically look for the techniques to put their beliefs into action. The critical factor is expectations—expectations stemming from an overarching philosophy rooted in a fundamental belief in the capacity of blind people to live full and productive lives.

Dr. Schroeder is a research professor at San Diego State University and a former

Commisioner of the Rehabilitation Services Administration.

[PHOTO/CAPTION: Blind preschooler, Cody Greiser, (center) participates fully in his local preschool program.]

The Blind Child in The Regular Preschool Program

by Ruby Ryles, Ph.D.

Blind children, if given a chance, can play and learn right alongside their sighted peers. An open mind, a positive attitude, and a little creativity are usually all it takes to integrate blind students into regular preschool programs.

To help you understand how you, too, can be successful in integrating a blind preschooler into a regular program here are some answers to common concerns expressed by preschool teachers and administrators. Remember that this is only an overview of common concerns. The National Organization of Parents of Blind Children (NOPBC) can help you with additional literature. We can also refer you to other local and national resources.

A BLIND CHILD IN OUR PRESCHOOL PROGRAM?

BUT...I don’t have any specialized training.

None is needed. All successful preschool teachers possess knowledge of general child development and instructional techniques appropriate for this age. The blind child can learn the same concepts that are taught the other children. The only difference is the method of learning. The blind child must make more extensive use of the other senses. They also need parents and teachers who will “bring the world to them” through lots of hands-on experiences.

For example, pre-reading skills should parallel those of the sighted child. Concepts such as big and little, same and different, prepositions (over, under, in, out, behind), shapes, number concepts, and scores of others are easily taught with concrete objects or manipulatives as an alternative to pictures on paper. Raised line drawings are also useful and provide one form of readiness for tactile reading.

BUT...How will he get around?

Parents are used to helping their children get accustomed to new places and will guide you in this respect. Usually, one or two visits to the classroom when the other children are not present will be sufficient to orient the child. Children will use many cues to find their way around. The sound of the wall clock or heat register may be a landmark. They quickly learn that the story time area is carpeted and that the dress-up area is next to the windows where they can feel the sun or hear the rain.

In moving outside the classroom a child may sometimes use the teacher or another child as a guide. More and more blind preschoolers are using white canes for independent travel. If the child in your school uses one, ask the parents about how and when it should be used, where the child should store it when not in use, and what to do if the child misuses the cane.

BUT...We have so many rowdy children—she’ll get hurt.

All children get bumps and bruises.

Learning to cope with groups of people is a natural and vital part of learning to live in our society. Protecting a child from the boisterous, rowdy play of other four-year-olds denies her a crucial stage in her development. Encourage the blind child to join in the running, wrestling, and rowdiness of her classmates. If she has been overprotected, she may need some extra encouragement and demonstrations of how to play in this manner. Skinned knees and tears from bumps last a few moments. The negative effects of sheltering last a lifetime.

BUT...He isn’t really blind; he can see some.

Blindness does not mean that the child is totally without usable vision. The majority of blind children have varying amounts of residual vision. “Legal blindness” is a term you may hear. It simply means that a child has ten percent or less of normal vision. Teachers need to know that many factors affect what and how much a child may see at any particular time. The type of eye condition, fatigue, lighting, excitement, may all affect a partially sighted child’s vision.

However, the child with partial vision is often placed in an unenviable position. She may be expected to perform tasks visually, even though her vision may not be the most efficient means to accomplish the particular task. Partially sighted children should be encouraged to become skilled in using their tactile, auditory, and even olfactory senses as well as vision. Many partially sighted children, for example, benefit from learning to read Braille. In fact, federal law (IDEA) requires that schools provide Braille instruction to blind and visually impaired children.

Talk to the parents whenever you have questions. The National Organization of

Parents of Blind Children (NOPBC) can also help with information and resources.

Blind children sometimes suffer from the “I’m Special” syndrome. Because their education does require some adaptations, they often come to expect and demand unnecessary accommodations. One little boy with partial vision was always allowed to sit next to the teacher during story time so he could see the pictures. Soon he expected to be next to the teacher in every activity. This caused resentment among the other children. After a consultation with the parents, it was decided that the boy could examine the pictures in the book before the story time and take his turn next to the teacher like everyone else.

BUT...What about movies, field trips, picture books, etc?

Adults accompanying the class on field trips should provide descriptions of “untouchables.” Short descriptions of pictures in storybooks are enjoyable for all the children. When needed, an adult may verbally describe movies or other performances quietly to the child. Many educational videos and television programs are now available with audio descriptions.

Painting and coloring helps children develop fine motor skills and are a part of the preschool experience, so the blind student should participate, too. Some blind children may resist activities that require them to put their hands into unfamiliar substances, such as clay, finger-paints, paper mache, rice/bean/sand tables, and so forth. Usually a loving, firm, “we’ll do it together” approach—with the child’s hands on top of your hands—will help your blind student get over this problem.

With a little imagination on your part, your blind student will easily gain as much as his sighted friends from your standard preschool curriculum.

BUT...We do not have any materials or equipment for a blind child.

A blind youngster in your classroom requires little outside the standard preschool materials and equipment. Often well-meaning attempts to create specialized materials result in meaningless activities. For example, plastic models of animals are usually confusing and meaningless to a blind child. As often as possible, use the real item to teach concepts. Without concrete teaching, a blind child may possess the vocabulary but lack the concept.

One preschool blind child seemed to know all about birds and their habits until one visited his class. As his turn came to pet the bird, his surprised exclamation of “It can walk, too!” startled his teacher. Discussions of birds had left him with an incomplete concept. He examined the bird’s legs and talons, felt it take a step and gained an understanding on which more complete concepts could be built.

BUT...I don’t know Braille.

You don’t need to. The blind child will be taught Braille by a specially trained teacher of the blind and visually impaired. However, you should find ways to expose your blind preschooler to Braille, just as you expose your sighted students to print. Twin Vision® books (regular print children’s books with Braille pages added) can be borrowed from the

American Action Fund for Blind Children and Adults for use in the classroom with all the children. Inexpensive Braille labels can be added to print labels in the classroom. For information about how to obtain Twin Vision® books, Braille labeling materials, and other sources of Braille books and materials for blind preschoolers please contact the NOPBC.

BUT...We can’t provide an aide.

Young children learn to solve problems by doing for themselves. An important part of the child’s life is knowing when to do it himself and when to ask for help. The additional assistance we too often give a blind child teaches dependency. This robs the child of confidence and the opportunity for problem solving.

Yes, he will need additional hands-on directions for many things. But this doesn’t need to be a problem. For example, finger plays and motions to songs, dances, and exercises are normally learned by watching the teacher demonstrate. Such activities are easily demonstrated by allowing the blind child to feel and follow the teacher’s motions while other children watch. This way, everyone learns them together.

Sometimes a child may have had so few opportunities for experiences that more individual attention is required for a time. If so, work to find creative solutions. Talk with the parents. Check into other resources. See what can be worked out.

BUT...I don’t have the heart to discipline her.

Then prepare yourself for the worst. As with any undisciplined child, tantrums, abnormal mannerisms, poor socialization, inattention, and delays in learning will quickly follow. Like any other child, a blind child needs firm but loving discipline so he can learn how to get along in this world.

BUT...How will the other children react to him?

Most preschoolers are curious, but not cruel. They have not yet learned the negative attitudes about blindness that are prevalent in our society. The children will mostly take their cues from you. You must learn to be open and natural about the child’s blindness. If you have lower expectations or treat the blind child with pity or condescension, then the other children will likely decide that it’s OK to ignore or belittle the child. However, if you respect his non-visual methods of learning and expect him to perform and participate just like the other children, then the children will treat him likewise.

[PHOTO/CAPTION: Barbara Mathews]

Kyra’s Kindergarten Year

by Barbara Mathews

On September 8, 1999, my daughter, Kyra Sweeney, started kindergarten at our neighborhood school in a regular classroom in a district where she is the only totally blind student. On June 23, 2000, the school year finished. I decided to write about her experience so that I can perhaps help other parents who face the difficult decision about the right educational placement for their child.

Kyra had a strong preschool background and so was probably as well suited for mainstreaming as any blind child. Mornings, she attended the wonderful Blind Children’s Center in Los Angeles, where she began learning Braille and cane use. Afternoons, she attended a regular private preschool in Santa Monica where we live. Her experience there varied enormously depending on the teachers and other children in her group.

We considered three alternatives for kindergarten. One was the school for the blind in neighboring Los Angeles, where most of her Blind Children’s Center friends would go. Another was a Los Angeles school with a VI resource room, located a long way from our home. Third was our neighborhood school around the corner from our home, where Kyra’s sister was finishing first grade.

We agonized over the decision, and we visited each program. We worried about the importance of having at least some blind friends, but we also worried about a long ride to school every day. We liked the idea of having our two girls in school together, but we also knew the importance of learning the special skills of blindness. Since I work full-time, I worried about whether I would have the extra time I knew it would take to create a program instead of sending her to an established one.

We made a tentative decision after meeting with the principal of our neighborhood school, who was very enthusiastic about Kyra and, in fact, became an advocate for her needs as well as my regular email pal. I say “tentative” because at the time the district did not have a Braille teacher. The district staff talked about bringing in a retired teacher part-time and getting help from the county if they couldn’t hire anyone, but I was not convinced. Now I know for sure that a piecemeal system like that would not have worked for teaching Braille.

The IEP process was horrible. Other than the O&M teacher (who had worked with Kyra in her afternoon preschool program), no one on the staff had a clue about appropriate goals and objectives or who would provide the services, and their way of dealing with it was to try to brush it off. Fortunately, another NFB family had given us their daughter’s kindergarten goals and objectives at the convention the summer before, so we had a place to start. It took three painful meetings, tears, and a lot of persistence to get an IEP put together.

We decided to put Kyra with the teacher her sister had for kindergarten and first grade. (All the classes are K/1 combined.) This teacher was most familiar with Kyra and a literacy specialist. The principal reported that this teacher would welcome Kyra in her class. When we first met with her about it, I sensed that she wasn’t all that enthusiastic, but I figured I was overly sensitive. I didn’t say anything and went ahead with it.

We also decided to have a one-on-one aide for Kyra. My husband described what we wanted as a “stealth” aide. The idea was that she would help all the students, with particular focus on Kyra. We thought, “Who would turn down the opportunity for an additional aide in the classroom?”

We also decided to sign Kyra up for the on-campus after-school childcare program. Our older daughter enjoyed the program very much, and we knew it would give Kyra more opportunities to socialize with other children.

Two things happened right before school started that made us optimistic. First, a Braille teacher was hired, and she was great! Second, the principal arranged a training session for all teachers and staff where I talked about Kyra and blindness. I shared the NFB philosophy and the importance of high expectations. I told them how to greet Kyra and shared other tips, so that they would feel more comfortable around her. I told them to talk openly with the students in their classes about Kyra’s blindness. This made a huge difference from the beginning in the whole school’s attitude toward Kyra.

Then the first day of school came and the roller coaster ride began. The first day, things generally went fine. The aide didn’t seem to have much training, and she certainly had not been informed of the role we had in mind for her, but the O&M teacher assured us she had worked with this aide before and that it would work out. The classroom teacher didn’t always remember to say what she was writing on the board, but we figured she would get it soon enough.

On the fourth day, Kyra’s homework assignment was to talk about new friends she had made. That’s when she broke into tears and said she hadn’t made any friends and didn’t have anyone to talk to. The next morning, I put out a call for help to everyone I could think of, including the principal, the teacher, and the school psychologist. The principal responded immediately with personal attention and a stroke of genius. She simply introduced Kyra to a girl in another class who was looking for a friend and facilitated a friendship between them. She asked the aide and others to help the two girls find each other at recess and lunchtime. It didn’t turn out to be a lasting friendship, but it did break the ice for Kyra.

A week or so later the phone rang, and it was the mother of a little girl who wanted to invite Kyra over for a play-date! What a simple thing for most families, but we were thrilled. This broke the ice for me. I remembered the advice I had gotten from the mother of a blind friend of ours who had grown up to be a successful and charming young woman. The mother said, “You’ll have to work much harder to facilitate friendships. You’ll have to ask others more than they will ask you. But it’s worth it.” So while I learned quickly to limit invitations to those kids who showed an interest in Kyra, I started using weekends as an opportunity to invite other kids for play-dates at our house. I had to plan and monitor the activities more than with my sighted daughter, but it was worth it. After a while, Kyra had a “best friend” named Lily who lived in the neighborhood.

We also signed Kyra up for all the popular activities in the community—soccer, softball, swimming lessons, rock climbing, musical theater. Some worked out better than others. (Fortunately for me, since I was the one who had to run with her, she decided not to continue soccer.) What was important, in addition to the fun she was having, was that other kids and their parents got used to the idea that blind kids do the same things as other kids.

But most of the time when I visited the school, I came away upset. The Braille teacher was excellent but frustrated because the classroom teacher was not providing any materials for Brailling. It turned out that advance planning was not this teacher’s strength. The Braille and O&M teachers were also trying to figure out the best time to work with Kyra, but it was difficult to get a fixed schedule. At the principal’s suggestion, we tried having weekly meetings among the staff providing services to Kyra, but they were poorly attended.

I learned that the other kindergartners were having computer time, but no effort had been made to install software for Kyra. I requested a technology assessment, which was done very superficially. It was January before Write Out Loud was installed and the Braille teacher started working with her on keyboard skills.

By December, there were still no Braille books in the school library or the public library where the class went once a month, even though we had provided information on the Kenneth Jernigan Library and other sources of Braille books before school even started. When I asked about it, the aide told me the books were “being catalogued.” I suggested she just take some books from the classroom along when they went to either library, but even this didn’t seem to happen.

Frequently I would see the aide accompanying Kyra when a classmate would have been more appropriate. The aide did not facilitate socialization, but rather seemed to interfere with it. Also, Kyra did not seem to develop a bond with the classroom teacher the way her sister did, and I wondered how much this was attributable to the aide acting as an intermediary rather than facilitator.

But Kyra’s reading was progressing and things were going okay, so we went along until two things happened in May, and I blew up. First, after a field trip, Kyra said the person she sat with on the bus was her aide. This demonstrated a complete lack of understanding on the part of the aide about what her job should be (and the teacher should have known better as well). Then, after an IEP meeting where we struggled with the issue of how to minimize pull-out time yet get Kyra the services she needed, I went to see Kyra and found her coming out of the classroom with her aide. I said, “Where are you going?” The aide said, “We’re going to do some Xeroxing.” I couldn’t believe this was happening. The Braille teacher was with me, and she gently suggested that Kyra should go back to the classroom. She later took the aide aside to talk to her about it.

I went straight to my computer and emailed the principal, the teacher, the O&M teacher, and the school psychologist. I said that even though the end of the school year was approaching, we shouldn’t wait to make changes. No one questioned my reaction. I had a long phone conversation with the O&M teacher, who made a couple of simple yet significant suggestions. Most importantly, she said the aide should not sit at Kyra’s desk, as she had been doing. Why hadn’t I thought of that before? She also said she was developing a daily checklist for the aide and asked for my suggestions.

It took a few more conversations, but there finally came a day in June when I took Kyra to school and came away happy. The aide had a desk of her own. When Kyra arrived, she came over and said hello then went back to what she was doing, leaving Kyra to accomplish her now familiar morning routine on her own. When she needed help finding something, a boy in the class helped her. She talked with others about the right answer to the daily survey question. A few days later, she came home very excited to report that the library had Braille books! Finally, progress had been made.

But the agonizing decisions continued to arise. After much thought and consultation with the principal and the Braille teacher, we decided to put Kyra in a different teacher’s class for first grade. This teacher student-taught in Kyra’s class this spring, and Kyra loved her. The principal reported, after approaching her with the idea, that this new teacher would be honored to have Kyra in her class. When I emailed the teacher she responded that she would love to have Kyra and assured me that she is very well-organized. She said she wouldn’t want Kyra to miss anything because she hadn’t gotten the materials Brailled. But we still worry about taking Kyra away from the friends in her old class and putting her in a new environment.

We also decided not to request a different aide. While the one we have isn’t ideal, she has shown a willingness to listen and learn, and she has a good heart. Also, few aides in the district are highly trained, and we might get someone worse. Instead, we provided in the new IEP for the aide’s time with Kyra to be reduced to three days a week by the end of first grade. Our goal, of course, is to eliminate the need for an aide entirely.

Bottom line: I think we did the right thing in mainstreaming Kyra. I think she is much more of a regular kid than if she were to go to a special school. I love the fact that we run into her friends at the park and the market, and she loves it, too. And she certainly is changing what it means to be blind in the minds of her classmates and their families. No one at school tells us the philosophy of the NFB is “radical.” It is simply accepted.

But making it work takes more time than I ever could have imagined. We were very lucky to get a Braille teacher who pushes Kyra to her limits and to have a principal who loves a challenge. Without these key people, the balance might tip the other way.

Every child and every situation is unique. But for anyone facing the critical educational placement decision, here is what I can offer from my vast experience of one year:

1. Look for enthusiasm about your child. It counts more than experience. This applies to teachers, principals, after-school programs, etc. If it’s missing, consider alternatives.

2. In a teacher, look for organization and advance planning. Without it, true inclusion is impossible for a student who needs adapted materials.

3. Remember when you knew nothing about blindness? That’s where most people are in their thinking. So, provide training for everyone you can, especially the teacher and the aide. For the most part, your efforts will be appreciated.

4. Look for avid email users, and use it yourself. I don’t know how we could have done without it. It lets you communicate with several people at once and it eliminates telephone tag. It lets people respond when it’s convenient, rather than when it’s an interruption.

5. Socialize. Be part of the school community. Invite people over. Show them that you expect your child to be included in social activities, and they will respond accordingly.

6. Trust your instincts. If you have a feeling it’s not right, it probably isn’t.

Barbara Matthews is a member of the board of the National Organization of Parents of Blind Children.

Chapter 7:

Parent Power

National Organization of Parents of Blind Children

What is the NOPBC?

The National Organization of Parents of Blind Children is a national membership organization of parents and friends of blind children reaching out to each other to give vital support, encouragement, and information. As an affiliate of the National Federation of the Blind, the NOPBC has the unique advantage of being a part of the largest, most active membership organization of the blind in the country. This relationship allows NOPBC members to draw upon the collective knowledge, wisdom, and resources of the real experts on blindness—blind people themselves. The NFB is a rich source of competent blind role models and mentors for blind and visually impaired children and their families.

Who Can Join the NOPBC?

* Parents of blind and visually impaired children

* Relatives, teachers, blind adults and others interested in creating better opportunities for blind children

What is the mission of the NOPBC?

The purpose of the NOPBC is to:

* create a climate of opportunity for blind children in home and society,

* provide information and support to parents of blind children,

* facilitate the sharing of experience and concerns among parents of blind children,

* develop and expand resources available to parents and their children,

* help parents of blind children gain understanding and perspective through partnership and contact with blind adults, and

* function as an integral part of the National Federation of the Blind (NFB) in its ongoing effort to achieve equality and opportunity for all blind persons.

What does the NOPBC do?

In order to accomplish our mission, the NOPBC has initiated many exciting programs and activities. Among them are:

1.         Seminars and workshops

2.         IEP information and resources

3.         Advocacy

4.         Free literature

5.         Slate-Pals, a pen-pal matching service for blind youth

6.         Braille Readers Are Leaders contest and literacy program for Braille readers and prereaders

7.         Support networks for parents of blind children with additional disabilities, parents who homeschool, and other families with special needs

8.         Kenneth Jernigan Braille Carnival for blind and sighted children

9.         My First Cane—A program to provide canes to blind toddlers

10.       Future Reflections: The NFB Magazine for Parents and Teachers of Blind Children.

How can I join the NOPBC?

NOPBC dues are $8 per family per year. This includes a subscription to Future Reflections. (Non-members are asked to make a subscription/donation of $15 per year.)

Members of NOPBC are also members-at-large of the National Federation of the Blind.

To join, fill out the membership application below and return it with your dues to the address below.

National Organization of Parents of Blind Children

Membership Application

1800 Johnson Street

Baltimore, Maryland 21230

(410) 659-9314 ext. 2360

bcheadle@nfb.org

www.nfb.org/nopbc.htm

Date_______________

Name(s) _______________________________________________________________

Address ________________________________________________________________

City ____________________________________________________________________

State ____________________________________________________ Zip _________

Email __________________________________________________________________

Telephone H: (        )______________________________________________________

C: (       ) _________________________  W: (        )______________________________

Name of blind child _______________________________________________________

Birth date __________________________

[ ] Parents

[ ] Teacher of the Visually Impaired

[ ] Other

 

Please make checks payable to National Organization of Parents of Blind Children (NOPBC)

$8.00 NOPBC membership (includes magazine subscription)

$____ Donation

$____ Total enclosed

The NOPBC is a 501(c)(3) not-for-profit organization.

Chapter 8:

Future Reflections

[PHOTO/CAPTION: Hannah Weatherd]

Responsibilities of a Seven-Year-Old

by Hannah Weatherd

Speech delivered at the Parents of Blind Children Seminar at the 2000 National Federation of the Blind Convention.

My name is Hannah Weatherd. I am seven-years-old. I'm from Lima, Montana. I'm in first grade at school. Lima School is kind of small. First and second grade have to be in a room. Third and fourth are in a room. Fifth and sixth are in a room.

My jobs at school are line leader, pledge leader, and helper. The helper’s job is to pass out papers and take the milk slip to the office, if we have afternoon milk. Our teacher, Mrs. Schroder, needs someone to water the plants. I was supposed to do that one day but I forgot.

There has to be somebody to put the trash in the big trash can and put a new liner in it. They need a first-grader and second-grader to put the forks, spoons, knives, and milk on the table for lunch. We need a librarian to straighten out the books so they won't be crooked when Mrs. Kluepner is being the helper. I really like four of the jobs the best. I like line leader, emptying the garbage, and I like to be the librarian.

At home I empty the kitchen trash. Sometimes I set the table and in the morning I make my bed. I feed our chickens, too. I clean my room. I find money in the washer, and Mom says whoever finds money in the washer gets to keep it. I pick my clothes out every day except Sunday.

I paid for my little brother’s airplane ticket to the NFB convention. I had enough money because I was on a McDonald's commercial, and I wanted him to come this year. I wanted him to come because he has never been on an airplane before except when he was a baby and he can’t remember it.

I haven’t decided what I want to be when

I grow up. I think I really want to be a postmaster the most.

The End. Thank you.

Hannah wrote her own speech and delivered it from her Braille notes. Her father, Brad, is on the board of the National Organization of Parents of Blind Children. Her mother, Jill, has written several articles for Future Reflections.

[PHOTO/CAPTION: Michael Taboada]

My Days Are Full

by Michael Taboada

Speech given at the 2002 National Organization of Parents of Blind Children Annual Meeting

Hi. My name is Michael Taboada and I am from Baton Rouge, Louisiana. I live there with my mother, father, little brother Robert, three cats, and lots of fish. I go to school at Villa del Rey Elementary and I am going into the fourth grade. I like going to school. My favorite subjects are technology and math. I’m learning about the Braille Millennium. Sometimes when my teacher and classmates have trouble with their Braille Millennium, I can figure out what is wrong. This is how I fill some of my day.

I have many activities when I get home in the afternoon. I take Tae Kwon Do. I have been taking classes for two and one-half years. I am a first-degree-decided black belt. I have learned many forms and know how to spar. They also teach us some self-defense moves. I also take piano lessons. My teacher’s name is Miss Melody. I have performed in several recitals. I learn music by memorizing what I hear and by reading Braille music.

Another activity I have is Cub Scouts. I am a first year Webelos. That means ‘We’ll Be Loyal Scouts.’ Our last activity was a hike to Clark’s Creek. We hiked really tall hills and saw many waterfalls. I played in the water. I felt wolf and deer tracks. We ate lunch at one of the waterfalls. We also had a space derby last year where we built our own rocket to race. I didn’t win the race but won best looking rocket. We go camping every fall and spring with our pack.

This summer, I took swimming lessons. I was in the minnow’s class. I learned the backstroke and how to dive. I practiced free style. We joined the YMCA so besides lessons, we go there to swim for fun. I am going to take a kid fitness class where you learn how to use all of the fitness machines. The rest of the time in the afternoon is spent riding my bike, playing with the neighborhood kids, doing my homework, practicing the piano, and listening to tapes. Sometimes on the weekend my best friend Michelle comes over to play. She is also in my class at Villa del Rey.

So as you can see, my day is pretty full from morning to night.

Michael wrote his own speech and delivered it from his Braille notes. He is the son of Dr. Joseph Taboada and NOPBC treasurer, Sandy Taboada (or Dr. Merchant, as she is known on the job at the Louisiana State University School of Veterinary Medicine).

[PHOTO/CAPTION: Nicole White]

What Freedom Means to Me

by Nicole White

The following address was delivered to the Parents of Blind Children Seminar at the 2001 NFB Annual Convention.

Good morning, everyone. My name is Nicole White. I am 14 years old and I will be in the ninth grade this fall. I am blind and have a hearing impairment. I also have Asperger’s

Syndrome. That’s a kind of autism. I used to have seizures a lot, but now only once in a while. I have mild cerebral palsy, but it’s not very noticeable anymore. When I was sent to public school years ago, my teachers said I am retarded and have a learning disability, too; but I disagree.

When I was about 9 months old, my family joined the NFB. They have helped us through the years to learn about blindness and to get the things I needed. Now my mom does things with the NFB to help other kids, too.

I’m pretty independent now, but not totally, at least not yet. Independence means doing things on your own without help. Sometimes it can be fun being independent, like making cookies. I also like going out to play whenever I choose, making my own meals, taking care of my sister when she is sick, and going into the store by myself to buy milk and stuff. My favorite thing to buy is Pringles. Sometimes being independent can be tiring and boring. Some examples of that are making beds, unloading the dishwasher, doing laundry, washing dishes, raking and bagging leaves in the fall, and taking care of my little brother (he’s so irritating). One of my jobs is to fold the towels and put them in the closet. My mother gets furious if I make a mess out of the closet and she make me take all the towels out and refold them.

My mom homeschools me and two of my sisters. These days, I get to do my work independently. In the morning she gives me my lessons and assignments, and then I go to my room or the dining room and spend the rest of the day getting the work done. I have to get everything I need for my work by myself and then put it away, too. That includes my notebooks, textbooks, dictionaries, and computer. Also other stuff, like a math compass, grid paper, the pushpins and rubber bands to make geometry figures, my slate and stylus, Brailler, paper, and such. Of course, everyone should have to do that. I usually make my own breakfast and lunch. I fix bagels, toast, sometimes eggs, frozen waffles; stuff like that. I don’t fix cereal much because I don’t like it, especially Trix. During the school year, it is my job to make breakfast for my younger sister and brother. I make them cereal, because they like it. I also make instant oatmeal, doughnuts, bagels, toast, fruit, and eggs for them.

For lunch, I like to make spicy food, like a sandwich with hot peppers. I also heat up leftovers, but they’re not my favorite. I like the spicy meals from Lean Cuisine. I enjoy cooking. Sometimes I cook dinner for my family. My favorite thing to cook is Hamburger Helper. Canned vegetables are easy. All you have to do is open the can, put them in a pot, and heat them up. The hardest part is the can opener. I wish we had an electric can opener.

Sometimes people try to take over and do things for me that I can do myself. Sometimes when I’m in a hurry, that’s ok. But most of the time it angers me and I wish they would stop. But since I am not a grown-up yet, that is often hard to tell them. My family are the most supportive people in my life. Most of the time, they help me and know that I can be independent. Mr. Tom is the greatest mobility teacher. Mr. Tom really knows what he’s doing because he’s blind, too. We turn mobility into fun. We go to the mall, we take buses, light-rail, and all kinds of fun things. When I am an adult, I plan to travel a lot. I want to go to Illinois, Japan, North Carolina, Tennessee, and Arkansas. And I will take these trips by myself.

This summer I am going to the Colorado Center for the Blind program for middle schoolers. I went last year too. They teach me how to be independent. Even though I have multiple handicaps, and I sometimes have a lot of trouble understanding the world, I’m sure I can be what I wish to be if I have help and try hard enough. I am thankful for the help my friends and family have given me. I am glad I am growing up in the National Federation of the Blind. I am glad they believe in me, and I know I can succeed in my life.

Nicole wrote and delivered her speech in Braille. Her parents, Joe and Loretta White, have been active members and leaders in the Maryland affiliate of the NFB since Nicole was an infant.

[PHOTO/CAPTION: Marc Maurer]

When the Blizzard Blows

by Marc Maurer, Ph.D., President, National Federation of the Blind

If a musician wants to become a virtuoso, it is necessary to practice. If an athlete wants to be a star, practice, practice, and more practice will be required. It seems to me that the simple but important things are often overlooked. When I think back, it seems to me that these simple things are often the most notable. I like the winter months—especially when there is snow. The cold is stimulating, and the bite of the wind offers a challenge that requires preparation. One of the pleasures of the winter is stepping from a windy thoroughfare, after a long trudge through the snow, into a warm and steamy cafe for a cup of coffee. The gloves and hat come off, and the hands are grateful for the warm cup.

In 1976 I was a student attending law school in Indianapolis. I had begun college in 1970 and been married in 1973. Although I had been able to find some employment during the summer months, jobs (as is often the case with blind people) were hard to come by. My wife Patricia and I lived in a one-bedroom basement apartment on the west side of town four or five miles from the law school. My wife, who is also blind, had been able to find employment (after a long, long search) as a typist for Blue Cross. Her checks paid the rent and bought some groceries, but there wasn’t a lot of money left over at the end of the month. Our outings were infrequent and strictly rationed. Once we went to Wendy’s for burgers. I remember eating two triples. I was very full but not the least bit sorry. Another time we went to dinner at Long John Silver’s for fish and chips.

Each morning during the week, I would walk about a quarter of a mile from our apartment to the bus stop. After about a twenty-minute ride, the bus would drop me near the law school. Classes began about nine o’clock in the morning. Sometimes they continued (with intermittent breaks) until late afternoon. But I was often finished with my formal work shortly after lunch. Then, there would be study in the library, or reading and writing back in the apartment. At about two o’clock one afternoon, my classes had come to an end. I had heard on the radio that morning that there might be snow, and as I walked to the bus stop, I reflected that the weatherman had been right. There was already almost half a foot of it on the ground, and the stinging wet flakes were pouring from the sky—a veritable blizzard. The wind whipped the snow into my face and down my collar.

When I reached the bus stop, I discovered to my surprise that there were two other people waiting for the same bus. At that particular stop I was almost always alone. Today, however, a woman was waiting with her three-year-old grandson. Oh, but the wind was cold. Nevertheless, we talked about what a pleasant thing it would be to get inside out of the storm. After a time the bus arrived. I climbed aboard, put my money in the fare box, and took my seat a couple of places behind the driver. The woman climbed aboard also with her little grandson. She explained to the driver that she was planning to travel the other way (east not west) but that it wasn’t very far to the end of the line so she would ride out with us and come back. The driver said that this would be all right, but she would have to pay two fares—one for going out and the other for coming back. The grandmother explained that she didn’t have that much money with her. So the driver told her that she must get off the bus, walk one block over to the street on which buses returned toward town, and wait. With great reluctance and a little sadness, the woman and the child left the bus, and started away from the bus stop.

Within a block I was wondering why I hadn’t done anything to help. I wanted the grandmother and the little boy to be warm. I could have made it come true. But I sat without moving until the opportunity had passed. I looked in my pocket to see how much money I had with me, and I found two or three dollars. That would have been more than enough to cover the cost. I could have paid the fare myself, but I didn’t. I let the driver put the woman and the child off the bus into the storm.

The recollection of that little boy and his grandmother are with me still. For almost twenty years I have been sorry that I did nothing to help. These two people symbolize for me the need to be prepared and to plan ahead to seize opportunities when they come. I could have made a difference to them that day, but I wasn’t prepared to think in those terms. If I want the world to be a generous place in which to live, I must begin with

generosity in my own life. If I want (as indeed I do) strength of character, courage, gentleness, and the ability to face adversity, I must plan ahead to find ways to build these characteristics both in myself and in those I meet. Part of behaving well is the habit of thinking and acting in a certain way. All of this comes to mind when I remember a certain blizzard while I was waiting on a street corner for a bus.

When I was in Indiana, it was very unusual for a blind person to be attending law school. I was able to be there because my friends in the National Federation of the Blind had worked and planned in the years before I joined the organization to make it possible. I needed books and a way to write that my professors could understand. I needed to know the techniques and skills that can be used by the blind to accomplish those things that would ordinarily be done with sight. I needed a background in traveling with a white cane. I needed the capacity to read and write in Braille.

I needed to know how to manage the ordinary activities of getting along on a daily basis—how to rent an apartment, how to acquire the use of a truck and a driver to move my belongings, how to manage a checking account, how to be sure that my neckties matched my other clothes, and how to locate people who would be willing to serve as readers—both for incidental matters like the mail and for those heavy law books. The National Federation of the Blind had helped me with all of this and had also assisted in finding the money to pay the tuition and other school fees. But this is only a part of what the National Federation of the Blind provided. Far more important than all the other matters were the encouragement and support I received from my friends and colleagues in the Federation. What they said was, “You can do it; don’t give up; keep trying; you’ll make it!”

The law degree that is hanging on my wall would not be there if it had not been for the National Federation of the Blind. The planning and preparation which are responsible for that degree continue for thousands of other blind people throughout the nation. Do we want blind people to be independent and live successful lives? Of course we do. What must be done to create a climate of opportunity and to foster the kind of training which is needed? We must plan to build our programs with these objectives in mind. We want blind people to be a part of our society.

We want to help build our country so that we can be proud of what we have in America. That is why we have the National Federation of the Blind, and that is why I wish I had helped the woman on the bus. Today I would certainly do it. Twenty years ago I didn’t. Our road to freedom is a long one with many twists.

The article above is reprinted from the NFB Kernel book by the same title, When the

Blizzard Blows.