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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ISSN 0883-3419
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 o