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to Parents of Partially Sighted Children
From the Editor: 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 by writing to Materials Center, 1800 Johnson St., Baltimore, MD 21230. However, I also decided to write 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 to never 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 does or does not see simply because he does not have a notion of what you can see. However, what your child will learn from these questions is that you think it is VERY important they they learn 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 there is something inferior or shameful 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 on his visual acuity. On the other hand, knowledge about his functional vision will help you better understand how he learns. As the parent, you will teach your child how to eat, dress himself, talk, clean up his room, ride a bike, and a thousand other skills of everyday living. You need to know what combination of visual and alternative (nonvisual) techniques to use when you teach him. Also, as he gets older, you will need to guide him so he can take on the responsibility of working out her own techniquesvisual and nonvisualand 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 between my use of the words 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 it will affect, how he 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 blind friends and colleagues have, but it's true. Here are a few things our family has learned, with the help of the Federation, about raising a partially sighted, really blind child.
Competence is a matter of good training and positive attitudes, not vision.
Understanding your child's vision can also help you understand behavior you may have found puzzling. For example, when we adopted our son, we could not figure out why he tilted his head to one side. We fussed about it and tried to make him hold his head straight until we found out the 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 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 to see what he is eating. We know there are many good alternative techniques used by the blind that 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 forka white chicken breast and a mound of potatoes may look like, 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 the cup is full. He seemed to be about 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 clear liquid 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 morepour water for guests, sometimes into clear glasses; measure oil while making 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 way, this is the time to develop the 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 around 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 and 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 do.
Teach your child to use tactile clues to verify what he or she can see only imperfectly or perhaps not at all.
Last year we discovered that our son, who was then 11, thought that the large ears on goatsthe kind that stick straight out of the head and are horizontal to the groundwere horns. He has never liked to touch animals, and we have never forced him to do more than give quick pats. We could 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, her had to guess at just what he was seeing. After we realized what had happened, we made him touch the ears and the horns, and we had a discussion about the different shapes and locations of ears and horns on various animals.
When teaching your child to use his hands, you should emphasize developing a light touch. Use all the fingers, not just one fingertip, and touch or search in a systematic way (up, down, left, right, etc.). Let him feel the produce in the supermarket. He won't, for example, be able to see the bumpy texture of the 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 the toothpaste out onto your toothbrush can be done more efficiently and thoroughly using alternative (nonvisual) techniques. The NFB has some excellent literature which can give you pointers on simple techniques in the kitchen and the 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 the 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.
There are many subtle and casual ways of introducing the subject of blindness with your sighted and blind children. 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 the 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 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, 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 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 the man that it was okay to pity you. Do you suppose this man, feeling the way he does about blind people, would hire a blind person to help run his 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 the 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 the discussion: "If someone is partially sighted but uses only sighted techniques, might not he or she appear foolish at times? What might have happened if Mr. Magoo had learned to use a white cane, read Braille, and to employ alternative techniques?"
Soon you will find that your children will bring things to your attention. Last year, my daughter who was seven 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 the ways this 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 Helen Keller jokes popular among middle-school kids.
Many partially sighted adults developed a superiority/inferiority complex as youngsters. They learned that those who could see more were superior to those who could see less. No one told them this, but they learned it nevertheless. For example, it is common in residential programs 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 the blind kids were expected to sit and be waited upon. In hundreds of small ways the children learned it was bad to be blind but good to be sighted. The flip side of this notion is, of course, that the partially sighted child 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, 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 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 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 blindfold, 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 experiences because of vision impairment are no more than the limitations we all have because of various physical characteristics.
Some years ago Chaz tried to play badminton with the family in the backyard. It was obvious after a few minutes that there was no way he was going to be able to hit the birdie with a racket. It was simply too small and too fast for him to see. He was quickly frustrated and soon broke into tears. I was upset, too. It hurts to see your child try something and fail. However, I took a deep breath, calmed myself, and sat down to talk with him. I began pointing out to him that because I was short I couldn't reach the top cabinets in the 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 for years to come.
In fact, looking back on the incident, I think that if such an opportunity doesn't 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 that you believe really would be unsuitable for the blind. For example, when Chaz was four years old he used to talk a lot about driving racecars. My inclination was to sit 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 insights and strengths.
Help your child to understand the cause of his or her blindness. Blind children should be able to explain to others why their eyes "look funny" or why they don't see the way others see. 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 the 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 their vision as they get older? Again, this is a situation where having many good blind adult role models can help.
One of our family's blind role models did not know until he was a college student that his eye condition was progressive. His parents had reassured 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 to function competently and independently as his or her vision decreases.
It is especially important that your child learn Braille and the use of the long white cane. Don't be put off by those who say that he or she should wait and learn it when he or she needs it. One problem with that approach is that it assumes that those skills are not useful now, and this is usually not the case. A child with retinitis pigmentosa, for example, will typically experience night blindness when still young. The use of the long white cane can provide much needed confidence for independent participation in after-dark activities like dating. Braille is essential for the child who can't read print efficiently for long periods of time without fatigue or who must use complicated reading devices like the closed circuit TV magnifier. Even those who can read print with some ease will find that Braille is nearly always more effective for tasks such as notes for a speech other oral readings such as poetry. It can also eliminate the difficulties that many partially sighted persons experience in reading their own handwriting.
Another difficulty with the waiting approach is that, if you wait, your child won't have the skills when he needs them. It takes about six months for an adult to learn the skills, and many more months to perfect them. Consider what this means for a high school student or a college student or for a young adult just establishing him/herself in a career or even a middle-aged man or woman with a family and mortgage payments.
I have three blind friends who have experienced significant vision loss within the past year. Two of these people learned Braille as children and began to use the white cane for travel years ago. Neither of them has had to limit their activities during this transition. The other woman, however, did not learn Braille as a partially sighted child and has never used a cane in her life. Her transition to the use of alternative techniques is more painful and frustrating than it might have been. Her positive attitudes toward blindness certainly help, but she still has to put in the time to learn skills which should have been mastered years ago.
What if you have been told that your child's eye condition will never worsen? Tempting as it may be, I don't think that parents should accept this diagnosis without some questioning and probing. For example, many so-called stable conditions (such as aniridia) are accompanied by susceptibility to secondary complications like glaucoma, and these secondary conditions can lead to further visual loss. Parents should be aware of possible or probable complications associated with the child's eye condition. It is also important to realize that partially sighted children are vulnerable to the same processes the rest of the population experiences. Aging and many common medical conditions such as high blood pressure, arteriosclerosis, and diabetes can, and do, affect the eyes and vision.
Being aware of these possibilities does not mean that parents should sit down with their child and tell him about all the things that might happen to any remaining vision. This would not be helpful. Rather, you should explain that although nothing drastic is likely to happen to your child's eyes, visual loss is a possibility. Of course, the older child will want and need more details, and you can fill in those as needed. However, the basic message should remain the same. Again, if alternative techniques are being learned and your family has developed positive attitudes about blindness, this should not be particularly difficult or traumatic to handle.
As I look back over what I have written, it occurs to me that I may have sounded something like a Pollyanna"If you have a positive attitude in life, everything will be okay." Of course, life isn't like that.
Your child will experience heartache 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's okay, 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 that was needed. "Yeah," he would sigh, give me a hug, then run off to play. Occasionally, it paved the way for in-depth discussions 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 practice for parents to become active when 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 the child is blind. The child, if he or she is an infant or toddler, is cognitively unaware of all this commotion. Ironically, the blind child's need for information, blind role models, and positive experiences about blindness is beginning in the school yearsjust 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 of the NFB. Notice 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, public education presentations, and state NFB conventions are just some of the many activities sponsored by the National Federation of the Blind local chapters and 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 lesson.
Many NFB state affiliates 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. Chaz 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 NFB 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 BlindImproving 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, "See boys, 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 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 truly respectable to be blind, then does it truly matter how much vision one does or does not have?
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