Future Reflections                                                                                                 Special Issue 2004

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Advice to Parents of Partially Sighted Children

by Barbara Cheadle

Barbara Cheadle and son, Chaz, enjoy a break during an NFB Convention.
Barbara Cheadle and son, Chaz, enjoy a break during an NFB Convention.

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

Dear Parent of a Partially Sighted Child:

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

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

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

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

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

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

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

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

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

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

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

Talk about blindness. Most blind adults will tell you that their parents never discussed blindness; some parents wouldn�t even use the word blind. This led to a great deal of unnecessary anxiety, fear, and false notions about blindness. So talk. With the child who has partial sight, it is especially important to talk about why people with some vision can be considered blind. In �A Definition of Blindness� Dr. Jernigan explains it this way:

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

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

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

Help your child understand that the limitations he or she does experience because of visual loss (and yes, there are some) are no more than the limitations that we all have because of various physical characteristics. Some years ago Chaz tried to play badminton with the family in our backyard. It was obvious after a few minutes that there was no way he was going to be able to hit the birdie with a racket. It was simply too small and too fast for him to see. He was quickly frustrated and soon broke into tears. I was upset, too. It hurts to see your child try something and fail. However, I took a deep breath, calmed myself, and sat down to talk with him. I began by pointing out to him that because I was short I couldn�t reach the top cabinets in my kitchen without a stool. Although his Dad could reach those top cabinets in the kitchen because he was taller, he had a hard time, because of his height, folding himself up into the back seat of our Volkswagen. We also talked about how he was a better swimmer than his older brother, who was, on the other hand, a better badminton player. Being blind was, I pointed out, nothing more than a physical characteristic; and, like any physical characteristic, it could therefore be a limitation sometimes. But it was no more than that. Chaz was about six years old at the time, and this discussion laid the groundwork for our approach to blindness in the years to come.

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

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

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

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

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

When you talk about the future don�t change your expectations just because you know your child�s vision will be less than it is today. Don�t limit your discussions of college or jobs or social activities to things you think blind people can do. Again, this will be much easier if you and your family are personally acquainted with a number of competent blind adults. Also, if you are teaching non-visual techniques to your child all along (even in little ways, such as using touch to find a dropped object), this will make it easier for both of you to anticipate how he or she can continue to function competently and independently as his or her vision decreases.

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

As I look back over what I have written, it occurs to me that I may have sounded something like a Pollyanna��If you have a positive attitude about blindness, everything will be OK.� Of course life isn�t like that.

Your child will experience heartaches and tears and frustrations related to his or her blindness, and the last thing he or she will want to hear is a lecture about how it is respectable to be blind. Last year my son would come home about once a month and, in a huff, declare, �Why do I have to be blind? I don�t want to be blind!� The more I tried to be positive and upbeat, the more frustrated and angry he would get. Finally it dawned on me; he just needed to blow off steam once in a while. He no more likes being blind all the time than I like being middle-aged. Once I realized this, I changed my tactic. I would say, �It�s pretty hard sometimes, isn�t it?� or �Had a bad day, huh?� Often this was all he needed. �Yeah!� he would sigh, give me a hug, then run off to play. Occasionally it paved the way for in-depth discussion of what he was upset about. Sometimes blindness was at the root of it, and sometimes it wasn�t.

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

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

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

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

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

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