Future Reflections Summer 1990, Vol. 9 No. 2
by Barbara Cheadle
About a year ago I talked to a parent who told me she really needed some advice about raising her very young partially sighted child. She wanted her child to have positive attitudes about blindness, but she didn't want to ignore or deny the visual abilities her child had, either. How could she do this?
Of course I referred her to the NFB articles "Definition of Blindness" and "Partially Sighted, Really Blind." Both of these articles are available free from the National Federation of the Blind. Write to National Federation of the Blind, Materials Center, 1800 Johnson Street, Baltimore, Maryland 21230. However, I also decided to write her a letter about some of my experiences in raising a partially sighted, really blind child. That letter, much revised and expanded, is the basis for the following open letter article.
Dear Parent of a Partially Sighted Child:
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 or any degree of vision loss and therefore something shameful about him as a person. He may fool you and others by faking vision, but he won't be fooling himself.
It is very important that you come to believe that, insofar as it affects your child's ability and potential to lead a fully normal life, visual acuity doesn't matter one bit. So next time you are tempted to say, "Don't you see ?" bite your tongue! I know what you FEEL, but use your head and FAKE IT. It is better for you to fake feeling nonchalant about your child's blindness than for him to spend his life trying to fake vision he doesn't have because he feels inferior. Think about it. Over time you will discover that your faked feelings about blindness as being no big deal will become real feelings.
I do not mean to imply, however, that it isn't important to understand something about your child's functional vision. Sounds contradictory? It isn't. 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 alternative (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--visual and nonvisual--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. (If you are getting confused about my use of blind and partially sighted, don't. I am using the terms interchangeably. If your child has sufficient vision loss that it affects, or you fear that it will affect, how he or she learns, then this article is for you.)
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 alternative 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.
Here are a few of the many things our family has learned, with the help of the Federation, about raising a partially sighted, really blind child.
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). There is a scientific explanation for it, involving such lingo as "null point," but essentially what it means is that tilting the head 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.
I read some literature recently which advocates using carefully selected color contrasts in everyday items such as dishes, clothes, toys, even foods so that the partially sighted child can see everything better. This is one of those ideas that sound great when you first hear them but aren't so hot when you think them over. Can you imagine, for example, walking into a restaurant and asking that your food be served on a blue plate so you can see the food better?
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 (darkened room) 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. I have observed him on several occasions as he has looked for a dropped object. He always uses his hands along with his vision. Sometimes he finds it with his hands first; sometimes he sees it first. It all depends upon the contrast of object and floor, lighting, and so forth. But 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.
When you want to help your child locate something visually, remember that something shiny or something with a very bright color will be most noticeable. Use it as a landmark in helping her locate an object that is difficult to see. We have found that using the clock system has been helpful in locating items on the horizon. For example, we might say that "The jet airplane is at about two o'clock, and it's leaving a trail of white clouds or steam behind it." And if the sunlight happens to hit the jet just right and sends a sparkle off it, he may be able to see that. But remember, don't make a big deal about whether your child can or cannot see it. Go ahead an give a verbal description if she seems interested, but drop the subject if she isn't. After all, she does not need or want to know every visual detail in her environment any more than you or I.
Teach your child to use tactile clues to verify what he or she can see only imperfectly or perhaps not at all.
Just last year we discovered that our son, who is now twelve, 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 finger tip, and touch or search in a systematic way (up, down, left, right, etc.). Let him feel the produce in the super Page 8 market. 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 alternative 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. Cutting, cooking, dusting the furniture, sweeping the floor, putting on make-up, and even squeezing toothpaste onto your toothbrush can be done much more efficiently and thoroughly using alternative (non-visual) techniques. The NFB has some excellent literature which can give you pointers on simple techniques in the kitchen and home. I recommend "Suggestions for the Blind Cook" (free); A Resource Guide for Parents and Educators of Blind Children ($5.95); and Handbook for Itinerant and Resource Teachers of Blind and Visually Impaired Students ($20.00). However, probably the best way to learn about these techniques is to talk to and observe competent blind adults.
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,iox 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 subtle and casual ways of introducing the subject of blindness with your blind child and with your other children as well. It doesn't have to be a big deal. In fact, you don't want to make it a big deal. For example, when you teach her to use her hands in finding a dropped object, you can explain casually that, because she is blind, this will help her find things faster. She may not be able to see everything that others see, but it doesn't mean that she can't do everything that others do. She simply has to learn to use her other senses in addition to her vision and learn other ways of doing things.
There are many other 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 discuss the popular myth that the blind, including those who are partially sighted, are bumbling fools. This is a good time to point out the usefulness of alternative techniques to the partially sighted. You might ask questions like this during your discussion: If someone is partially sighted but only uses 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?
Soon you will find that your children will bring things to your attention. Last year my daughter, who was seven years old at the time, excitedly told me that one of her favorite Saturday morning cartoons had featured a blind character. She was able to tell me in what ways the cartoon had portrayed blindness positively and realistically, and in what ways the cartoon had reverted to stereotypes. My sons have brought newspaper articles to my attention and discussed their feelings about the Helen Keller jokes popular among the middle-school kids.
Many partially sighted adults developed a superiority/inferiority complex as youngsters. They learned that those who could see some were superior to people who were totally blind. No one told them this, but they learned it nevertheless. For example, it was common in residential schools for the partially sighted kids to lead the totally blind kids around. The partially sighted kids were allowed to roast and fix their own hot dogs at a picnic, but blind kids were expected to sit and be waited on. In hundreds of small ways the children learned that it was bad to be blind and good to be sighted.
The flip side of this notion is, of course, that the partially sighted must then be inferior to the sighted. I think it's absolutely crucial to avoid this trap with our partially sighted kids.
One way to make sure we avoid this is never to imply to ourselves, to others, or to our children that they are only able to do something because they can see. I think the correct approach is to let the child know that although he or she may do a task visually, there are other non-visual ways to do it, too. You might say, for example, "You use your vision and your ability to see colors when you pick out the clothes you wear. How do you suppose someone who doesn't see at all might do this?"
Not only is this helpful in developing positive attitudes, but you and your child might be surprised at the efficient alternative techniques you discover this way. I once showed Chaz how to snap beans by touch, and he discovered that this was faster than putting his nose down on the bean to try and see what he was doing. One day, after we had been discussing the techniques blind wrestlers use, he put on his sleepshades to wrestle with his brother. To his surprise he discovered that he did better blindfolded. Under the blindfolds, he explained to me, he wasn't startled or frightened by every sudden motion his brother made.
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.
Page 10 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.
In fact, looking back on that incident, I think that, if such an opportunity doesn't seem to come up naturally, the parent should set up a situation where this concept can be learned.
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 race cars. 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, John (my husband) was right. A couple of years later Chaz now talks about being the mechanic while John Earl (his brother) drives the car.
The key is to give your blind child every opportunity to try many things and thereby learn from personal successes and failures.
Remember that all children are different, including blind children. What one child with limited vision may be able to do, another child with precisely the same visual limitations may not be able to do, and this difference will have nothing to do with vision. Each child is different and has different interests and strengths.
Help your child to understand the cause of his or her blindness.Blind children should be able to explai n to others why their eyes look funny or why they don't see the way others see. Some day, 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.
However, this is not a one-shot deal. A child's ability to understand will change as he matures, and he will often forget what you told him a year or even six months ago. So you must plan to keep your child updated about his eyes and his vision. Talk to him about the structure of the eye, how the eye works, what his eye disease or condition is called, and how his particular eye condition affects his visual abilities. For example, our son has cataracts, nystagmus, and glaucoma, and is monocular (he is totally blind in one eye). He knows and can explain to others how each of these conditions affects his vision. Cataracts cause problems with glare, nystagmus causes eye fatigue and is the reason he tilts his head, glaucoma caused the total blindness in one eye, and the resulting monocular vision causes depth perception difficulties. 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 can be helpful.
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.
If your child has a progressive eye condition, I believe it is best to be honest, but with a positive attitude about blindness and the future. 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 alternative 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
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. Most of the time it is OK, but sometimes it isn't much fun. 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 and the child is no longer a child, but a young adult who should be independently pursuing a job, or preparing for a career with further education. 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. My husband and I have also been through the emotional mill of fighting year after year to get good services for our blind child. We too have felt the need, once decent services were established, to sit back and take a breather.
It is all too easy to forget that our needs and feelings do not necessarily coincide with our child's.
For example, the parents' need for information and support is usually highest when they have just learned that the child is blind. The child, if he or she is an infant or toddler, is cognitively unaware of all this emotional commotion. 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.
Your older child can be encouraged to bake something for the bake sale. If your child hasn't baked before, perhaps you can ask a local chapter member to invite him or her over and give a hands-on demonstration.
Many states sponsor legislative events such as banquets, breakfasts, informational fairs, etc. Our son has gone with other Federationists to visit legislators to discuss important blindness related issues. Not only did he learn much about blindness, but he now knows more about the legislative process than many other children his age. He has also helped demonstrate the use of woodworking power tools at an NFB informational exhibit for legislators. Yes, I have to take him out of school for some of these affairs, but this is no problem. Good teachers recognize the profound educational value of such firsthand experience
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 pride and dignity grow. They were visible in his smile, his walk, the lift of his chin, the set of his shoulders, and the confident 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 gives all blind children, regardless of visual acuity, the opportunity to walk into the future with confidence, pride, dignity, and self- respect.