ON PARENTING THE VISUALLY IMPAIRED CHILD

ON PARENTING THE VISUALLY IMPAIRED CHILD

Future Reflections Fall 1991
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ON PARENTING THE

VISUALLY IMPAIRED CHILD
by Norman Balot
Editor's note: The following article is reprinted from the VIPS Parents

Newsletter, a publication of Visually Impaired Preschool Services of Louisville,

Kentucky.
Parenting is a difficult job. It's a tough job. It is not a job that any of

us, under any circumstances, can take lightly. And when the parenting process

involves an infant or a child with a disability, there are certainly going to be

a few more twists and turns in that developmental road which we are going to

have to examine and deal with....

Here at VIPS...there are lots of things we can do to help parents of

visually handicapped children, and certainly some things we simply cannot do. We

can teach the "how to's." We can teach you how to do certain things at certain

times and what might be the best thing to do at one particular time. And we can

talk with you about the why's of this or that situation or occurrence. But life

is situational. Life is made up of tens of thousands of different occurrences.

And how to deal with [each situation] simply cannot be taught. Basic to

everything is one's approach, one's judgment, one's attitude in dealing with

these tens of thousands of situations.
And frankly, one's attitude is the key. Perhaps a simile will be of some

value here. Consider for a moment a carpenter who is so skilled he knows how to

operate every tool there is available. This carpenter has every tool which has

ever been invented. So he's got the great skill and he's got all the tools. But

those tools lie in a tool box, and if the carpenter cannot open the tool box,

then he's useless; he can't do anything unless he's got the key to that tool

box. In the same way your attitude is a key. It is a key that will determine the

usefulness of the techniques that you have learned as a parent. And so, while

VIPS is certainly going to help you with the how to's and the why's of dealing

with and raising your child, perhaps the more significant benefit of the program

is the development of a good, positive attitude toward your child.

Let's stop for a moment and let me ask you a question. Suppose I were to

say to you: "I have a very serious affliction. I have been burdened with a

serious problem for most of my life." And I would ask you what [you think] that

problem is. Well, before any of you answer,...I smoke cigarettes. That is my

problem. I've smoked cigarettes for many, many years. To me this is a burden;

it's an affliction; it's something I wish I didn't have. It is quite possible

that many of you might say to yourselves, "I don't understand this blind guy

standing up there telling us that smoking is his most serious problem."

Well, ...I'm saying this to you to make a point. Certainly blindness has

been something of a problem for me for much of my life. It has been, it is at

times now, and it very likely will be a problem for me in the future. But much

of the time it represents no problem to me at all. My life has been a successful

life, a fun life, a productive life. And frankly, it has been a life which I

don't know that I would trade. Now mind you, I'm not saying that I would not

trade it. I'm just saying that I do not know that I would trade it.

If some all-powerful deity were to come to me and say: "Norman, at age

three you will not get spinal meningitis and, as a result, you will not lose

your eyesight. However, your life as a sighted person will have no guarantees,

no assurances. We won't guarantee success, or fun, or productivity. You take

your chances." Well, I don't know that I would want to trade the life I've had

for that. Because as I said, it has been one hell of a lot of fun. It has been

useful. It has been, in my mind, very worthwhile. And so I leave you with my

inability to choose and you may draw your own conclusions. I wish for all of you

that your visually handicapped children have a similar problem in choosing

whether or not they would select another life....

....I've been a lucky guy. I have certainly been blessed with certain

talents, which have helped me along. And of course the fact of my blindness (one

cannot deny this) has acted as a tremendous motivating factor for me. I don't

know where I would have been or what I would have done had I not been visually

handicapped. It has represented a strong incentive, moving me along through the

educational system and of course through my work.

But I cannot deny the great start that was given to me by my parents, and

particularly my Dad. He was an unsophisticated fellow, my Dad was. He was not

confounded by the fact that he had a blind son. He saw to it that he took his

blind son with him wherever he could to show him off. He seemingly had no guilt

in regard to having a blind son. In fact, he showed a tremendous amount of pride

in his blind son.

I found it interesting (as a contrast to all of this) to learn of a recent

study done on AIDS patients. I think some of you may know that the greatest

fears in our society happen to be cancer, blindness and AIDS-in that order.

Well, I learned in chatting with some people recently that there was made

available to some AIDS patients a drug which would significantly prolong their

lives. But, as a side-effect of the drug, the possibility of blindness was

increased significantly. Just about all the patients chose not to take the drug.

And that astonished me. It should astonish you. It simply amazes me that one

would choose not to take a drug which would prolong life despite the possibility

of loss of sight.

Hopefully, all of you in this room will not fall victim to the fear of

blindness. It is the beginning of that good, positive attitude that you're going

to develop. Because, frankly, if you do not develop that attitude, if you fear

blindness (and you don't operate in a vacuum), you're going to pass that fear

on, and that fear to some extent will become part of the life and the thinking

system of your child.

Let's talk about some of the things we get involved with that tend to

reinforce this fear of blindness. Let's start off with the blindfold game. All

too often people want you to learn what it's like to be blind by putting on a

blindfold. They say that by putting on that blindfold you'll understand how it

feels to eat and walk and [experience] a variety of activities that one does

daily as a blind person.

Well, what are you going to feel when you put on that blindfold? You're

going to be frightened. You're not going to be able to see. It's going to scare

the hell out of you. And you're very likely going to walk into things. You're

going to put your arms out and wave them about. You're going to sit down at a

table and try to cut food and throw stuff all over the table. You may even have

some difficulty finding your mouth with your spoon or fork. I'm here to tell you

that this is a silly game. That's not the way I feel, and your putting on a

blindfold is not going to make you feel anything like me. When you put on a

blindfold you're going to be dependent. You're going to feel frightened. You're

going to feel incompetent. And that is not the way I feel, and it is certainly

not the way you're going to want your child to feel. Putting on a blindfold

teaches you a lot of negative things, and those negative things are very likely

to be passed on to your children. You cannot walk in my shoes and you shouldn't

try. That's not the way to learn how blind people will function and how to best

help your children to function properly.

What is your job? Well, in a nutshell, you're going to promote exploration

in your child. You are going to develop self-confidence in that child. You're

going to do what you can to build a good, strong ego. You're going to promote

success. And, you're going to promote pride. Exploration, self-confidence,

strong ego, success, and good, old-fashioned pride; these are the things you're

going to promote in your child. And frankly, you're not going to do it by

putting on a blindfold.

So how are you going to do this? How are you going to deal with all the

variables? All we can do is give you some of the guidelines that may be helpful

to you, but it all really rests on your judgment. So let me take just a moment

to examine a few of the situations that have occurred in my life, and hopefully

they can be extended to a few of the situations that you may be dealing with.

How about unwarranted praise? The first time I walked into a duplicate

bridge tournament here in Louisville, the bridge director announced that there

was a blind person playing that afternoon and the only real difference connected

with everyone else's play would be that they would have to call their cards as

they played them. Well, they all thought this was really wonderful. Somebody

even said, "Oh, isn't that wonderful," at which point I received a very fine

round of applause. I felt compelled to stand up and say that while this was very

nice, the applause would be a whole lot more valid if they gave it to me after

the tournament. And that did get a chuckle, and I think people then realized

they had done something rather strange. They had given me unwarranted praise.

It's unnecessary. It's bad practice. It's the kind of thing that you do not want

to do with your youngsters: praise them for something they have accomplished.

You've got to accomplish something, you've got to do something, before you

deserve praise.

The desire to overprotect your child is going to be an important

consideration in your youngster's development. I can certainly think of some

incidents in my wrestling career (and I was a fairly competent wrestler in

college) that may have some pertinence to the point I'm trying to make. At the

beginning of every wrestling bout the combatants come to the middle of the mat,

shake hands, and move to their respective corners. On too many occasions the

referee would try very hard to get me to agree to start in a position which

involved contact with my opponent. It was something he felt was helping me,

something he felt was right. It was something I refused to do on every occasion

and, thank heavens, I always got my wishes in this regard. I felt that by

starting in a different fashion from all other sighted wrestlers, I would be

given an unfair advantage. And that is not the way I expected to win. If I was

going to win, I was going to win because of my ability. It's the kind of thing

you're going to have to think about in dealing with your child.

The real problem is trying to achieve the right balance between

overprotection and rejection. I think every child, blind or sighted, must go

through the usual bumps and knocks and falls and getting into difficult

situations that are so very helpful in learning how to survive. Your child is

entitled to those experiences which, in many ways, represent the beginnings of

his or her learning how to contend with life. On the other hand, one has to be

very careful not to carry this too far so as to wind up with a state of

rejection....

There is also the matter of taking blindness lightly. Can blindness be a

funny thing on occasion? Can you tell a joke about a blind person? Can you laugh

at jokes about blind people? Certainly we all laugh at jokes about other

minority groups. Can blindness be treated lightly? It's a difficult thing to do

perhaps. I've been privy to situations on skiing expeditions where blind people

have been lying flat on their faces in the snow, and on canoeing trips where

blind people turn their canoes over and are floundering around in the water,

simply laughing at themselves, with people around them laughing at them. There

are certainly situations in which...blind people can laugh at themselves, and in

which others can laugh at blind people. I think that's healthy. I think when you

reach a point when you can, in certain situations, take blindness lightly, you

are healthier for it. And I think when you reach that point, it's a factor that

you can pass on to your kids. I think it's a factor that will make their lives a

whole lot healthier and a whole lot more wholesome.
And now let me finish up by raising two other issues briefly, namely

educational placement and training and career choice. These factors might be a

little off in the future for you, but they're worth considering now.
In the whole service delivery system designed to assist blind people and

their families, there are certainly many, many professionals. Some of them are

excellent, some are pretty terrible. And there are many in that vast no-man's

land somewhere inbetween. It disturbs me that, often as not, in trying to work

out an effective educational placement, one gets the distinct impression that

professionals in the business are trying to sell something to you. Well, let me

simply say this: You must beware of advice which focuses on the negatives of

something else. If a representative of an itinerant system is talking to you

about your child's going to public school and all you're hearing [from them] is

how lousy the school for the blind is; or, on the other hand, a representative

from the school for the blind is telling you how awful the public school system

is, that's something you want to back away from. Because frankly it isn't a

matter of where your child goes, it's a matter of what your child is going to

learn. You want to be sure, for example, that your child is going to learn to

read Braille. Totally blind or partially sighted, I believe that visually

impaired people ought to learn how to read Braille. It is a matter of your

child's being literate. I am well aware of the fact that there are very

excellent pieces of equipment for enlarging print material and excellent

resources for recorded materials. But, in my mind, your child's ability to read

Braille should be a primary consideration in any educational program your child

enters.

You should ensure that your child is going to get some form of orientation

and mobility instruction. You want to be sure there will be learning experiences

connected with the skills of daily living which will supplement what you have

taught your child over the years. And you should expect (as is the case with any

good school program) that your child will be permitted, and in fact encouraged,

to become involved in a full physical education program.

Career planning and the kind of work that your youngster will be doing when

he or she grows up may well be something that is on your mind now, and will

obviously become a reality not too far in the future. Perhaps you can remember

back to that long distant past when you were growing up and thinking about

becoming a doctor, or nurses, or fireman. Well all kids have dreams and visually

handicapped children have such dreams. You'll be working with agency people in

regard to those vocational aspirations that you have for your children or your

children have for themselves. And, once again, you will want to recognize there

will be both some excellent and some pretty poor counselors in the agencies. You

don't want to be pushed into the stereotypic kinds of jobs counselors will, on

occasion, try to move visually handicapped clients into. Mind you, there is

nothing wrong with these jobs into which many blind people have moved

successfully. But, on the other hand, you can be imaginative and so can your

youngster. There are blind people who are scientists and stock brokers. A

variety of jobs are being opened as a result of computer technology. And so you

and your child have as much right to be imaginative in the selection of a career

as any sighted person.

If you cannot find the kind of role models in the agencies (and in fact

even if such role models are there) let me encourage you to contact and learn

about the very active consumer groups of the blind which exist in this country.

There are affiliates of these consumer groups in every state. Not only will you

learn a great deal about advocacy from these organizations, but you' Il meet a

vast array of self-confident people who have gone off and established successful

lives in a variety of occupations.

And so I'll close and leave you with this final wish. I sincerely hope that

someday in the future at least one of your children will be doing what I am

doing right now; making a speech to a group of people like yourselves and

talking about the wonderful, successful, and exciting life that he or she has

had. And I would hope that he or she would attribute a good part of the success

to the fact that you, as parents, provided a good and necessary start in those

oh so important, early growing up years.
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