Advice to Parents of Partially Sighted Children

Advice to Parents of Partially Sighted Children

Future Reflections Summer 1990, Vol. 9 No. 2
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ADVICE TO PARENTS OF
PARTIALLY SIGHTED CHILDREN
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
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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.
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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.