FUTURE REFLECTIONS
Vol. 11, No. 3
Summer, 1992
Barbara Cheadle, Editor
Contents
Mom, What Does Blind Mean? by Pauletta Feldman
Blindness: From the Perspective of Sighted Children
Braille Competency Test Near Completion
JOE Committee Releases Braille Instruction Guidelines
Maryland Passes Braille Literacy Legislation by Sharon Maneki
Toy Ideas for Young Children
Hearing the Sunrise by Nancy Scott
An Eye for Art
Do You Wanna Go to the Store, Ted? by Ted Young
Independence: To Have and to Hold by Christine Boone
The Buddy System Program: Pathway to Independence by Pamela Dubel
Connecticut Parents Seminar by Sandy Killion
Homeschooling the Blind, Multihandicapped Child by Sandy Karpenko
On Becoming a Wise Consumer of Low Vision Services by Eileen
Rivera, M.B.A.
Hear Ye! Hear Ye!
"MOM, WHAT DOES BLIND MEAN?"
by Pauletta Feldman
From the Editor : There are a few subjects in our society which
even the most sensitive and caring parent--or maybe I should say
especially the most sensitive and caring parent--finds difficult to
discuss with his/her children. It isn't a long list: sex, death,
drugs, AIDS, racial and religious prejudices are some that come to
my mind--with sex and death probably the most common. Just the
thought of trying to explain or answer a question about sex or
death to an inquisitive four-year-old can leave us with a pounding
heart and sweaty palms. No doubt the reasons are many and varied.
Sometimes the difficulty may arise out of ambivalent feelings: we
can't explain our beliefs to others--especially a child--because we
are not really sure what we believe. Often, however, our
awkwardness stems from a lack of experience and modeling. Maybe our
own parents never discussed such topics with us, and though we feel
knowledgeable and secure in our beliefs, we simply don't know how
to discuss them with children. Fortunately, there are many places
parents can turn to for help. Parenting classes, individual
counseling, religious faith, and self-help books are just some of
the avenues through which parents can get information and guidance.
But what do you do if you have a blind child? Who is going to
tell you what to say when your child asks, "Mom, what does blind
mean?" Or, "Dad, am I blind?"
Pauletta Feldman gave that question a great deal of thought.
I do not know all of the influences which shaped Paulette and her
thinking about blindness, but I do know some of them. Some years
ago she and her husband attended, by special invitation, a weekend
NFB-sponsored leadership seminar for parents of blind children. We
talked a great deal about blindness at that seminar--what it was,
what it wasn't, what we thought about it, and what we felt about
it. A number of the participants and leaders of the seminar were
themselves blind. Parents talked with, laughed with, argued with,
worked with, cried with, and learned to respect their blind
colleagues at the seminar. Since then, Pauletta has been a regular
reader of Future Reflections and the Braille Monitor, and some of
her articles written for a local parent group newsletter have
appeared in Future Reflections.
As I read Pauletta's article about her and her son's
discoveries about blindness, I thought of our family's journey. My
son is now 14, so we have come a little further down that road.
Chaz also has partial vision, which has added a slightly different
twist to the experience now and then. Our strategies, Pauletta's
and mine, were sometimes the same, sometimes different. I think I
feel less sadness, perhaps because I have been surrounded for so
many more years by normal, successful blind friends and colleagues.
But our goal, I believe, is the same: to raise a child who truly
believes that it is respectable to be blind.
Independence and success are important, but not enough. I
can't count the times have I heard blind adults say: "My parents
were great about letting me do the same things other kids were
doing when I was growing up. But the one thing they never did was
talk about blindness. It was only when I grew up and met the
National Federation of the Blind that I learned to feel good about
my blindness."
Fortunately, blind children today do not have to grow up
before they can encounter the positive philosophy and mutual
support of the National Federation of the Blind; it is here for
them--through you--right now.
Here is Pauletta's story as reprinted from the VIP News,
September/October 1991, issue.
It wasn't until my son, Jamie, was five years old that he finally
asked me that question. We'd used the word blind in conversation,
and he'd certainly heard it from other people. But we hadn't really
discussed blindness or its implications with Jamie. Maybe we were
just "chicken" and putting off the inevitable. However, we had
decided that we would handle discussions of blindness with Jamie as
we had handled discussions of sex with our older children: when
they started asking questions, we felt they were ready to be told
the facts.
So that day at naptime when Jamie asked about blindness, I sucked
in a big breath and summoned my courage. "Blind means that you
can't see with your eyes," I said. "I can see things with my eyes.
I can see the trees and the birds and all of the other things I
tell you about. But you see things in a different way than with
your eyes. You use your smart fingers and your smart ears." He was
quite satisfied with that answer and didn't pursue the subject
further that day. However in the days to come, he would ask
questions again. The kind of questions he asked led me to believe
that, in his mind, he wasn't the one that was different, I was! In
a way, it was like his first notion of differences among people was
of how they were different from him, rather than how he was
different from them. I liked that--I liked how self-confident and
self-loving he was.
For awhile, Jamie seemed to think that everybody we knew was blind
and that there were just a few people who could see. He began
asking about person after person in our family and among our
friends to sort out who was blind and who was not. Gradually he
came to realize that he knew more people who could see than who
could not. I'm so thankful that we knew other blind children and
adults so that as this realization dawned on him, he did not feel
isolated or alone. The blind people that we knew were really neat
people. They were friends and fun to be with, just like our other
friends. They were people that Jamie really liked, and he could
feel good about having something in common with them.
Jamie began school and loved learning to read Braille. He became
very interested in how sighted people read. Then he began asking of
everyone we knew whether they read with their fingers or with their
eyes.
During the past two years since facing that first question, there
have been many incidents that have brought both hidden tears and
silent laughter as we have gone through Jamie's formation of
opinions about blindness. There was the day that he came home from
school very indignant because a teacher had mentioned that he
couldn't see. He said. "I told her that I can too see! I can see
the light!" Another day, as he and his brother sat at the kitchen
table doing homework, he asked accusingly, "Is Don doing his
homework with his eyes?" And he laid his face on his Brailled
worksheet and said, "Then I'm doing my homework with my eyes too!"
He decided that someday he was going to go to school with his
brother and then he would be able to read print because they didn't
teach Braille there.
He went through a phase of picking up some lingo and developing an
interest in degree of blindness. He'd ask of fellow visually
impaired students whether they were "totals" or "partials" (and of
course, he wasn't a "total" because he could see some light). He
also came up with some clever excuses. When reminded for the
umpteenth time not to poke his eyes, his response to me was very
patronizing, as if educating a child, "Mom, blind people just like
to do that!" Then there was the night near Christmas when we went
driving around to see the lights in the neighborhood. I tried to
describe them to Jamie, but he finally said with some boredom, "I
can't see the lights, Mom. But don't blame me! I'm blind"
As Jamie has gotten older, some of his responses to his blindness
have begun to be tinged with sadness. One day we read a little book
called, "Corky the Blind Seal," about a seal in a zoo who lost his
sight. The next day as he got off the school bus, he said, "I want
to be a bus driver when I grow up!" My heart ached, and I just
said,"I bet driving a school bus is fun, too." But when we got in
the house, he confessed. "I know I can't be a bus driver. Blind
people can't drive, and I'm blind. I'm glad I'm blind, Mom. I just
wish I could be blind like Corky the seal was blind, because he got
to see first." He asked if it was nice to be able to see, and I
said that it was. We talked about how he could see what I see using
his other senses, like when we went to the ocean he could feel the
water, taste its saltiness, hear its waves, and smell it, too. He
liked knowing that there were things that even people who were
sighted actually couldn't see, like the wind--that we had to hear
it and feel it to know it was there just like he did.
I've always wanted Jamie to feel good about himself. I haven't
wanted him to think that there is anything wrong with the way he
is. I haven't been able to bring myself to tell Jamie that,
according to some people, there is something wrong with being
blind. Maybe I'll regret this someday, but I figure in time he'll
learn. I hope he will come to me with his questions then and that
I'll be able to answer them. To me, blindness is a difference, a
source of sadness sometimes and inconvenience at others, but
there's nothing wrong with it.
Life is a journey of self-discovery. I want Jamie's journey to
bring self-love with the discovery of his many potentials and
capabilities as well as his personal limitations. We all have to
face certain limitations. It's how we cope with them that really
matters. So far, Jamie has always managed to find a silver lining
for every one of his clouds, to compensate for each limitation with
a special strength. Why just last week he said, "Mom, aren't you
glad I'm blind and have such smart fingers and can read Braille?
You can't read Braille with your fingers! You have to use your
eyes."
BLINDNESS: FROM THE PERSPECTIVE OF SIGHTED CHILDREN
Editor's Note: The following two items--an article by Lauren L.
Eckery and a school essay by Rochella Cook--give us a peek into the
minds of two sighted children who have a special relationship with
someone who is blind. Lynden Eckery's mother, Lauren, is blind, and
Rochella has a younger sister who is blind. The article by Lauren
Eckery is reprinted from the November, 1991, Braille Monitor; the
essay by Rochella Cook was a school assignment, and was mailed to
Future Reflections by her mother, Esky Cook.
Blindness: From the Perspective of Children
by Lauren L. Eckery
We have said many times throughout the years that children are the
hope for the future of the National Federation of the Blind. We do
not limit our hope to blind children, since sighted children will
also grow up either to help or to hinder our cause as we progress.
The children who will help us most will be those who have learned
early in life to recognize the real issues surrounding blindness.
If they carry this knowledge with them for the rest of their lives
and put it into useful practice, they will stand beside us,
constantly aware and totally convinced that sight is not
everything.
We often speak, particularly among ourselves, of the many incidents
in our lives which reek of unintended discrimination against the
blind and of the ways in which these words and actions bother us.
I think it is important that we do this. Discrimination and
oppression are an integral part of our reality.
However, our hope and enthusiasm in our Federation work and play
can be greatly enhanced by the wisdom and humor which come from
children who have given our blindness a second thought. I have
shared examples of this nature with you in the past. I have some
more recent examples, which I would now like to share with you.
Not long ago I was walking home from work, traveling up Webster
Street. I heard the squeals and the roar of several small children
in joyful play with their wagons, cars, Big Wheels, and tricycles.
They were playing on the sidewalk. Suddenly, I heard a mother's
shriek of terror, "Watch out! Take those toys off the sidewalk
right now so she won't trip over them!" It sounded like a matter of
life and death. As I continued walking toward the children, I heard
them scurry to remove their toys from the sidewalk.
One little boy didn't make it. As he was tugging away at his
vehicle, I approached him, saying "Hi" to him as I quickly
maneuvered around him and his vehicle by using my long white cane.
Immediately he asked, "What's that?" As I explained to him how and
why I used my cane, I discovered other toys still on the sidewalk.
I remarked to him that it might be a good idea to take the rest of
the toys off the sidewalk since somebody might come along and trip
over them. I was astonished by his response.
"But you finded 'em." Obviously he saw no need for panic since he
had just witnessed a demonstration that one did not have to see to
find the toys on the sidewalk.
Then there is my daughter Lynden. She seems to go through phases of
pretending her father and I are not really blind; being angry about
our blindness, complete with insulting behavior; and occasionally
being unusually realistic about our blindness.
One day this past winter, when I was ill, Lynden wanted one of her
school papers signed. My signature guide was not easily at hand.
Neither of us wanted to go get it. In the past, in a situation like
this, Lynden might have said, "Why can't I just sign it for you?"
I have explained to her that this is never a good idea. As her
mother, I can and will sign anything needing a parent's signature.
Her father will do the same. On this particular day, Lynden left
the room, busying herself in some mysterious activity. Returning,
she presented me with a paper signature guide which she had
fashioned herself. The accuracy of the shaping of this guide
assured me that she had indeed noticed and accepted the tool I have
used all these years to facilitate the independent signing of my
name. This was not an act of shame and anger, but one of
consideration, love, and respect.
Finally, I would like to share a poem which Lynden wrote. Her
third-grade class was given an assignment to write a poem about the
color green. Each poem was placed on a large green paper shamrock
for St. Patrick's Day.
Most of the references to color I hear from sighted people come in
predominantly visual terms. Although green is not Lynden's favorite
color, I think her description of green, with its inclusion of
other bodily senses--the good, the bad, and the fun of
life--demonstrates an open, wholesome, and heathy perspective on
the color green. With Lynden's permission, it is with a mother's
pride and with an editor's pleasure that I now share this poem:
Green
by Lynden Eckery (Spring, 1990)
Green is Spring
And a four-leaf clover,
And the feeling of running.
Green is the taste of mints.
Grass and fresh air smell green.
Green is the sound of a bird and a cricket.
Mouldy bread and a headache are green.
Green is camping.
--The End
Editor's Note: Everything is relative, so they say. Certainly it is
true that what is precocious behavior in a 2-year-old would be
childishly immature behavior in a 7-year-old. The deep insight of
a 10-year-old old is shallow thinking in a 21-year-old.
Understanding blindness is also relative to age and maturity. As
parents we need to understand this and encourage our children when
they express thoughts that are basically sound and appropriate for
their age level. Consider the following school essay. The young
girl who wrote it is attempting to demonstrate how wrong the public
is about what it believes about blindness. It is not a denial of
blindness (as the last sentence seems to imply), only a denial that
blindness necessarily means deprivation of all the small pleasures
and beauties of life. Here is Rochella's essay.
Essay Question: If you had the power to give anything to anyone,
what would it be and to whom would you give it?
Rochella Cook, Baltimore, Maryland.
My sister is blind. She is seven. She has black, curly hair and a
few freckles. I would give her sight. I would show her all those
pretty colors. Bright, glaring red; soft, soothing pink; grassy,
shiny green; and light, sky blue. I would show her the striking sky
during a sunset. I would show her the gorgeous rainbow after a
rainstorm. I would show her flowers beginning to bloom and flashing
traffic lights. I would show her smoke as it curls and wiggles away
into the sky. I would show her a little, red balloon as it climbs
highter and higher into the sky. I would show her all the
photographs she never saw before. I would show her and show her
until there was nothing left to show her.
But someone already beat me to this present. My sister can see. She
can see by feeling, by smelling, by hearing, and by tasting. When
she eats a fireball, she says, "This is red!" When she hears rain
pouring and thunder booming she says, "It's grey outside!" When she
smells burning, she says, "Oh no! It's black!" My sister is not
really blind.
BRAILLE COMPETENCY TEST NEARS COMPLETION
Reprinted from the April-June, 1992, issue of the NEWS, a
publication of the National Library Service for the Blind and
Physically Handicapped.
The first of the National Literary Braille Competency Test's
examinations has been submitted to the editorial committee for
comment and review, according to Claudell Stocker, head of the NLS
Braille Development Section (BDS).
The National Literary Braille Test is designed to evaluate Braille
reading and writing skills. It will test the educator's performance
in slate and Braille writer skills, Braille reading skills, and
knowledge of Braille code rules not included in the writing and
reading sections.
"We are developing the test at the request of many
professionals in the field of blindness and from organizations of
and for the blind who wanted a test that would evaluate Braille
skills of teachers of blind children and adults," explains Stocker.
"The Library of Congress was asked to develop and administer the
test because of the integrity we have demonstrated in the
transcription certification program and because they felt we had
the most expertise in the area of Braille." She also noted that the
petitioners were impressed with the Library's "apolitical" status:
it is impartial to "teachers, universities, or other
organizations."
The test will take four to six hours to complete and will be
given locally with the applicant responsible for selecting a site,
identifying a monitor, and arranging a testing date. The monitor,
however, will receive instructions on administering the test from
BDS. A score of 85 will be required to pass. A candidate has three
chances to pass at six-month intervals. A person failing the third
time will not be eligible for retesting for one year, during which
time he or she will be advised to receive more Braille instruction
through a Library of Congress program or a university.
NLS director Frank Kurt Cylke says that the effort is part of
the National Library Service for the Blind and Physically
Handicapped's long commitment to Braille literacy. "From the
beginning," he says, "we have been concerned about literacy needs,
and this is another step in our efforts to make Braille more usable
and available throughout the country."
"Braille is a vital literacy tool," says Judy Dixon, NLS
consumer relations officer, explaining that it is the major reading
and writing system for blind people. However, there is concern that
"teachers receive only a minimal amount of Braille instruction
during their training." She further says that by ensuring that
teachers of blind people know the Braille code, school systems will
be more comfortable recognizing the need for such instruction.
In addition, the focus on literacy across the nation has
shifted some attention to Braille literacy and some states are
beginning to pass legislation requiring that Braille be taught to
blind and partially sighted children. According to James Gashel,
director of governmental affairs, National Federation of the Blind,
"Arizona, Kansas, Louisiana, Maine, Missouri, Minnesota, South
Carolina, South Dakota, and Texas are some of the states that we
know have adopted Braille literacy legislation, and there may be
more." The importance of this legislation is that it "changes the
presumption" that partially sighted children will read print and
maybe Braille. "This legislation," states Gashel, "says that a
blind child with some vision will read Braille, and may read
print."
Tom Martin, assistant chief of the Network Division, says that
such activity is "likely to increase the extent to which network
library Braille collections are used, perhaps initially for the
younger readers of Braille, but over time, certainly for Braille on
all reading levels."
Other endeavors in promoting Braille literacy by NLS include:
* The development of two new certificates in math and music
proofreading;
* Modifications of the math Braille course to accommodate blind
people;
* Development of new brochures to encourage volunteers in Braille
literacy efforts;
* Development of a unified Braille code in cooperation with the
Braille Authority of North America and the International Council on
English Braille; and
* Continuing education of more than 200 Braille training groups
through conducting workshops for transcribers, distributing
information, and recruitment assistance.
Test One of the National Literary Braille Competency Test is
due back from the twelve-member committee by May 1, 1992. After BDS
revisions, the test will face a fifty-member peer professional
review. It is scheduled for release early in 1993.
Teacher competency tests in music, math, and computer Braille
are also under consideration for development in the near future.
From the same issue of NEWS comes this announcement:
JOE COMMITTEE RELEASES BRAILLE INSTRUCTION GUIDELINES
Guidelines released by the Joint Organizational Effort
committee (JOE), a group of organizations of and for blind persons
in the United States and Canada, say that both print and Braille
should be included in a visually impaired child's curriculum if
parents and school administrators cannot agree on which medium is
best for the student.
JOE, which is committed to improving Braille competency, also
said that if parents and administrators agree on a medium, whether
Braille or print, the student should be taught that medium.
Braille literacy has long been an issue in the blind
community, but with the recent emphasis on literacy and the
Americans with Disabilities Act of 1991 that mandates accessibility
for all Americans, it has once again been pushed to the forefront.
The Joint Organizational Effort committee was instrumental in
NLS's development of the National Braille Literary Competency Test.
Its members include the American Foundation for the Blind, the
Association for Education and Rehabilitation of the Blind and
Visually Impaired, the Blinded Veterans Association, the Canadian
Council of the Blind, the Canadian National Institute for the
Blind, the National Federation of the Blind, and NLS.
MARYLAND PASSES BRAILLE LITERACY LEGISLATION
by Sharon Maneki
On May 12, 1992, a group of jubilant Federationists traveled
to Annapolis to take part in the ceremony in which Governor William
Donald Schaefer signed the Literacy Rights and Education Act For
Blind and Visually Impaired Students into Law. Delegate Sheila
Hixson and Senator Arthur Dorman, the bill's prime sponsors, also
took part in the ceremony to share in our victory. This was a
momentous occasion not only for the blind of Maryland, but also for
the blind of the nation.
Under this law: a.) a blind or visually impaired student's
need for Braille shall be presumed when developing the
Individualized Education Program; b.) the student's current and
future literacy needs must be considered; c.) Braille is not
required when it has been determined that the student does not need
it; d.) requirements for the certification and recertification of
vision teachers shall be strengthened; and e.) the Maryland State
Department of Education shall coordinate the availability of
textbooks in non-visually accessible formats.
The road to victory was a long and difficult one. The National
Federation of the Blind is a pro-active organization that responds
to the needs of blind persons and never evades its responsibility.
Throughout the 1980s, we listened bitterly as blind adults who grew
up as visually impaired children expressed frustration at their
lack of Braille skills. We shared the anguish of parents whose
pleas for instruction in Braille for their blind children were
denied by vision teachers and school officials. We could not
understand why Barbara and John Cheadle had to go through two years
of due process procedures in order to obtain Braille instruction
for their son Charles. It took concerted efforts by parents of
blind children and blind persons in the National Federation of the
Blind to correct this unacceptable situation. As it turned out,
much persistence would be needed to change the attitudes of
educators and to win the hearts of legislators about the importance
of Braille.
One of the best vehicles for change is legislation. In 1986,
the NFB of Maryland was the first affiliate to ask its state
legislature to enact legislation to ensure Braille literacy for
blind and visually impaired students. This legislation quickly
became embroiled in controversy due to the opposition of the
Maryland School for the Blind.
Although this initial effort was unsuccessful, we continued to
take every opportunity to bring the Braille issue to the attention
of legislators, educators and the general public. Day by day, year
by year, we made progress. By 1991, we had changed attitudes
sufficiently so that consumers and educators could begin to
negotiate the terms for a literacy bill, and we proceeded to have
a literacy bill introduced in the 1992 session of the General
Assembly. House and Senate Versions of the bill were introduced
with 32 House sponsors and 13 Senate sponsors.
Then, prior to the hearing of the Senate version of the
literacy bill, we learned that the Department of Education was
proposing an amendment which would eliminate one of the bill's
major points. The Maryland State Department of Education argued
that the "presumption of Braille" clause of the bill conflicted
with the federal law requirement to develop an Individual Education
Program for each student. We argued that this clause was not a
violation of federal law since Braille was not required if the IEP
team found it unnecessary. The Attorney General of Maryland issued
an opinion which said in part: "...the bill does not prevent
development of individualized education programs, or limit the
variety of services available for those programs." With this ruling
in hand, we persisted with our efforts well beyond the committee
hearings and ceased our activity only when the final victorious
vote had been recorded.
While individuals can sometimes cause change, it takes
collective action to move mountains. Success with a Braille
literacy bill in one state provides the impetus for the passage of
similar bills in other states. The successful passage of literacy
bills in Kansas, Texas and several other states helped us achieve
our success in Maryland. The Maryland Attorney General's opinion on
the presumption issue will help affiliates in other states win this
argument.
The advantage of a national organization to develop model
legislation and to assist its state affiliates with securing the
passage of legislation is extremely important. Just as we developed
a model white cane law which was passed in every state in the 1950s
and 1960s, we will pass Braille literacy legislation in every state
in the 1990s.
As we move from the lawmaking phase to the law enforcement
phase of our struggle for literacy in Maryland, we must work to
develop regulations to determine which students should learn
Braille and to establish standards of Braille competency for vision
teachers. We can only hope that the foundation of cooperation and
mutual respect that we have begun to build with Maryland educators
will make the accomplishment of this phase easier and faster than
the first.
We cannot abandon our responsibility to ensure that blind and
visually impaired children are adequately taught the skills of
literacy. Maryland parents who ask for Braille instruction for
their blind children now have the force of law to back up their
request. Through the collective action of the National Federation
of the Blind, every blind and visually impaired child will regain
his right to literacy and education.
TOY IDEAS FOR YOUNG CHILDREN
Reprinted from the VIP Newsletter. Original title, "Christmas Gift
Ideas."
What can I get my child for Christmas? This list of gift
suggestions was put together by the staff of the Center for Blind
and Visually Impaired Children, Milwaukee, Wisconsin. Most of these
toys can be found at your local toy store.
Tactile Toys for the Early Learners
1. Koosh balls
2. Caterpillar squeak toy or wrist toy
3. Spiney hedgehog squeak toy
4. Clutch ball with knobs (good to hold and put in mouth)
5. Plastic slinky in bright orange color
Light Toys
1. Disney Lighted Mobile
2. Disney Carousel and Music Box
Cause/Effect Toys for Early Learners
(These toys will give a response to a child's action.)
1. Teddy Beddy Bear Jack-in-the-box by Fisher Price. Roll the box
to get the bear to pop-up.
2. Push 'n Dance Bear by Tomy. Push down on a globe, the globe
squeaks and the bear moves.
3. Push 'n Go Merry-Go-Round by Tomy. Push down on handle and a
dinging bell rings for fifteen seconds.
4. Playskool Band. Makes six different instrument sounds. Child
sits under the toy as if holding a table on lap.
5. Popping Car by Fisher Price. Roll it back and forth to produce
a popping sound made by balls hitting a trap door and then popping
up into a globe.
6. Little Tykes piano or zylophone. Uses an up-and-down hand motion
to produce a sound. The sound is not continuous and requires a hand
motion for each sound.
7. Two-foot-long mini-organ. Plays like a piano or organ or in
auto-play will produce an entire melody with one key stroke.
8. Vibrator pillow. Small, plush pillow that vibrates when pushed
in the middle. (Found with back rest pillows in personal products
department.)
9. Personal massager (egg shaped). Push down action on a small
ball. One name brand in Patata by Homedics.
10. Sound animals. Small, plush, hand-held animals that make a
sound when you tip them over.
Visual Motor Toys
1. Stacking rings
2. Pegboards. Get one with pegs that are stackable.
3. Pounding toys. There are several wooden or plastic versions. One
has four balls which child hits with a mallet. Balls are pounded
into a hole, roll down a ramp, and then appear out of a hole in the
bottom.
4. Formboard puzzles that use geometric shapes rather than cutouts
of food or toys. These shapes are more easily recognized by our
children.
Preschool Ideas for the 4's and 5's
1. Popoids
2. Duplo blocks
3. Fisher Price Alphabet Desk
4. Memory match cards and lotto board matching games
5. Nesting cups (circles are the easiest to fit together)
6. Magnetic blocks
7. Magnetic mosaic or parquetry blocks to make designs
8. Write Start (wipe-off cards to practice pre-writing skills)
9. Visual discrimination worksheet activity books (practice
concepts like same and different, mazes, matching letters and
numbers.
10. Fun With Food items by Fisher Price
11. Little Tykes tea set (larger pieces for easy handling)
12. Light Brite (Practice fine motor control by putting pegs into
holes on a vertical plane. Promote creative play and reinforce
color recognition.)
Cause/Effect Toys for Toddlers
1. Busy boxes such as the Touch 'n Talk Train
2. Pop-ups. Push a button and a toy pops up.
3. Pop-up Pals. Disney or Sesame Street themes. Each of five
buttons causes different character to appear.
4. Discovery Cottage by Fisher Price.
5. Music boxes to reinforce twisting and winding wrist motion.
6. Sounds-go-round. Uses a pull-down handle to produce a sound.
7. Spinning Bee. Push down on the handle to make the toy spin while
the bee flies inside the clear globe.
8. Color Spin. A set of eight colorful balls rotate in a clear
globe as the child slides his hand on a roller ball.
9. Playskool flashlight. Light can rotate between red, green, and
white.
10. Playdough is always a winner.
11. Sparkle Doll. When doll is pushed her earrings and heart light
up.
12. Jack-in-the-box with a large handle
13. Brite Bear by Colorforms
HEARING THE SUNRISE
by Nancy Scott
I am a person who happens to be totally blind. Because of my
blindness, most people would not say that I "see" things, but these
people do not know the many definitions of "sight". Check any
dictionary and you will find that only a few definitions of "see"
reflect visual meanings. If you "see" what I mean, for instance.
Many people, though, keep insisting that I miss a lot by not
having vision. This is true in some situations, but I would like to
turn the tables. As an example, how many sighted people routinely
pay attention to the exact moment when the brightness of a new day
reaches their windows? In my house, sunrise never goes unnoticed.
Thanks to a nifty and inexpensive piece of technology which is
actually an advertising novelty, I herald the sunrise each morning
in song.
The nifty technology is a small, plastic disk with a light
sensor on one side. In the winter I have a disk at both ends of my
house on kitchen and bedroom window sills. When the day brightens
enough at the respective window, the sensor sings a verse of "My
Way" in electronic music similar to the musical greeting cards. In
the summer, because the sun rises so early, I only use a light
sensor in my kitchen window.
I have enjoyed learning about light from my singing sensors.
First, I learned that the brightness never hits both windows at the
same time, although it is always within about two minutes from
kitchen to bedroom. Also, sunrise occurs earlier as the year
progresses. And the sun doesn't have to shine brightly, since the
disks will sing on rainy days, too; although they usually sing
later. Very bright flashes of lightning will activate the
sensors--which might give me some good indication about when to
unplug appliances in a summer storm.
The pitch of the kitchen's "My Way" is a bit higher than the
bedroom's. You could say that the "view" is in a different key. Of
course, the real differences in pitch are determined by the luck of
the manufacturer's draw. Either way, I can tell from anywhere in
the house which window is receiving daylight just by the pitch. In
the winter, I can be awakened by sunlight coming in the window (I
could do this in the summer, too, if I wanted to wake up around six
a.m.). Instead of having the sun in my eyes, I get its song. I
never miss it. How many sighted people "see" like that?
For further information or to order light sensors for your
experiments in "seeing", contact Wessian Specialties, P. O. Box
20015, Cleveland, OH 44120-0015. These light sensors are also very
useful in checking if room lights are on or off. So have fun
hearing the light in your world, especially hearing the sunrise.
AN EYE FOR ART
Editor's Note: The following article by David Halbrook appeared in
the Times-Call, Longmont, Colorado, Sunday, January 26, 1992. It
was recently reprinted in the Braille Spectator, the newsletter of
the NFB of Maryland.
An Eye for Art, Woman Brings Unique Vision to Gallery
by David Halbrook
Several years ago, Tina Blatter tumbled into an artistic
crisis. Fretful that her future hinged on duplicating the style of
other painters, Blatter punished herself to render an exact
likeness of the world around her. It wasn't a pleasant chore for
someone legally blind since birth and able only to discern vague
outlines of her subjects. Then a photographer gave her a
revelation.
"This woman spent thousands of dollars on camera lenses to
distort things," Blatter recalled. "She said, `You can do it
naturally, so why try to make everything perfect?' It was one of
those things that really influenced me. It gave me permission to be
myself and not try to make everything real realistic."
To behold Blatter's work--her exhibit is on display through
February at the Lafayette Art Center, 101 S. Public Road--is to
experience life in the abstract. It is to see and feel familiar
objects and scenes jolted from normal context. It is art that
commands full attention of the senses.
Employing all manner of media--smooth stones, rhinestone stars
and half-moons, stained glass paper-mache, flower petals and pine
needles--Blatter calls it two-dimensional, or tactile art.
"I'm very aware of colors and things around me, and I try to
be creative and imaginative as opposed to literal in how I see
things in my art," she said. "I didn't come to the idea of tactile
art until I was an adult because we learn from an early age we're
not supposed to touch things.
"I find children and blind people really enjoy it because most
galleries and museums forbid us to feel things. A blind friend
recently went to a museum and came back saying, `Wow, I counted 18
glass cases.'"
A new resident of Colorado, Blatter divides her time between
creating and marketing her art and teaching the county's blind at
Boulder's Center for People with Disabilities. It is a good mix,
she said, for supporting oneself full-time as an artist in a new
setting takes patience--and energy. Often she must load herself and
her art onto a bus to market it at galleries across the Front
Range.
Now uniquely her own, Blatter's style evolved, surprisingly,
from a study of Henri Matisse. "Matisse was going blind in the late
stages of his career," she said. "He found it easier to cut pieces
of paper to create his art. That gave me the idea of cutting petals
out of foil and ribbon to help me see colors and shapes. I later
learned that many of the early impressionists, like Monet, had
sight impairments. They just painted what they saw."
"I spend a lot of time educating gallery owners about
blindness. Only later can we meet on the common ground of art," she
said. "Certainly I'd like to someday be viewed as an artist first.
Then maybe the headlines won't always say `Blind Artist.'"
DO YOU WANNA GO TO THE STORE, TED?
by Ted Young
The following article is reprinted from the July-August, 1991,
issue of the Braille Monitor. The introductory remarks are those of
Barbara Pierce, the very able Associate Editor of the Braille
Monitor.
From the Associate Editor: Only rarely in life is one's fate
determined by a single irreversible act. Most of the time we look
back and notice that a series of small acts and decisions have
shaped our outlook on life and our skills for meeting its
challenges. This is a comforting thought since it means that
evolving patterns of dependency or timidity can be reversed if one
has a little perseverance and grit. Parents, of course, play a key
role in shaping their children's attitudes toward themselves and
the world around them; and it is worth a little parental reflection
to consider in what ways they may unintentionally clip their
children's wings, particularly those of their blind children.
Ted Young is the president of the NFB of Pennsylvania. In the
Spring, 1991, edition of The Blind Activist, the publication of the
National Federation of the Blind of Pennsylvania, he wrote about
such a small but important episode in his own life. All parents of
blind children should take heart from the courage shown by Ted's
mother. Here is the story:
The other day I had occasion to wonder why it is that some
blind persons are more willing to be independent than others. Yes,
I know that this is true of sighted people as well, but that truism
was not the point of my contemplation. Anyway, the question carried
me back in thought to my first real assertion of independence. I
don't know its relevance for anyone else, but perhaps it would
prove helpful to a parent confronted with a similar situation.
My parents were not particularly overprotective. My father
figured out that I could tell if a fish was biting by holding the
line and taught me how to fish. My mother talks about how hard it
was to follow the advice of the first expert in blindness she ever
talked to by letting me wander about the house, bumping into things
on my own. But, hard or not, she sat back and let me do it. The
problem was that my parents were no more prepared than others to
deal with a blind child, and there wasn't a lot of professional
help or advice available in central Pennsylvania. As a result,
although they knew what I could do when I was being watched or was
on familiar territory, they had their fears about letting me be
outside the house by myself.
How well I remember that familiar, friendly house of my
childhood. Despite the leaking roof and the landlord's complaining
because the rent was overdue, despite the many times my mother had
little to put on the table for a meal, it was security and home. My
world was my often-grouchy father, my always-caring and loving
mother, and my three sometimes-okay sisters. I vividly remember
being pulled from that security at the age of four to be dropped
into the unfamiliar environs of the Overbrook School for the Blind,
where I would spend nine months a year until high school
graduation.
As time went by I learned to wander, play, and enjoy things
indepedently on the grounds of Overbrook. Here there was no
question. I was out on the sidewalks and grounds playing, running,
or walking independently with my friends. I was, in short,
experiencing my own capacities.
Now we come to that sultry summer day the recollection of
which started these ruminations. I can't remember whether I was
seven or eight, but I know that I had been to Charlie's, the nearby
grocery store, many times with my sisters. What a great place it
was--filled with the pleasant smells of meats, vegetables, and
coffee and run by a friendly owner who gave candy to the kids. To
get there one needed only to walk down the front steps of my house,
make a left turn, walk a half block to the corner, turn left again,
and walk another half block. That's right; no alleys or streets to
cross, no big deal, unless you happen to be the caring mother who
doesn't know what best to do for her blind child.
I'm not sure when it occurred to me that, although my sisters
were sent to the store all the time, my mother never asked me to
go. I do know that on the day in question none of my sisters could
be found, and my mother was complaining that she would have to drop
what she was doing and go to the store herself. I told her not to
worry; I would go for her. That offer was immediately and firmly
declined. Although I cannot remember the argument that followed, I
do remember telling my mother that I could do it, and I remember
her stating that I wasn't going to try. I ended the argument by
telling her that I was going to the store, and she could find me
there. She replied that I'd better not. I guess she didn't believe
me because she eventually went upstairs, at which point I sneaked
out the door and was on my own. Down the street and around the
corner to Charlie's I went, feeling guilty but good. The problem
was that once I got to Charlie's, I had no money to spend, and I
needed to wait there since I wanted my mother to come and see that
I could make it on my own. I did the only thing I could think of at
the time which was to sit on the front step of the store and play
with a leaf.
I won't go into the beating I got for disobedience or the day
or two that followed in which I practiced nonverbal resistance. I
was furious to realize that my demonstrated abilities were being
ignored and discounted and was determined not to give in. The only
protest I could think to make was silence. Although I never
discussed it with her, I believe my mother was torn between the
need to punish disobedience and her recognition of my need to be
treated like any other child. That was the situation two days later
when my mother helped with a major step in my development by
phrasing the simple question, "Do you wanna go to the store, Ted?"
INDEPENDENCE: TO HAVE AND TO HOLD
by Christine Boone
Editor's Note: This article is reprinted from the Feburary, 1992,
Braille Monitor. The introductory remarks are those of the Braille
Monitor Associate Editor, Barbara Pierce.
From the Associate Editor: Christine Boone is an independent young
wife and mother who has worked hard for the Federation wherever she
has lived since she first found the organized blind movement. She
has learned the truth of the poet's statement that "Stone walls do
not a prison make, Nor iron bars a cage." The most formidable
limitations that stifle humanity are chains that bind the spirit,
and most of these are forged in the human mind itself.
Independence is a subtle and often misunderstood treasure.
People who are losing their sight frequently rail at their loss of
independence, by which they mean their inability to do things in
the same old way. And if they refuse to master the skills that will
enable them to carry out their daily responsibilities using
alternative techniques, they are correct, for they will be forever
dependent on those around them. We humans don't like change,
especially change imposed on us against our wills, so it frequently
happens that we focus our dislike on the manifestations of our
altered condition: "I wouldn't be caught dead using a cane." "I
don't need Braille." And gradually the prison walls rise around us,
cutting us off both from what we have been and from what we have
the power to become.
But independence is also a slippery thing. Even when we think
it is safely and permanently in our grasp, it can ooze away without
our having noticed what was happening. The National Federation of
the Blind has always expended a good deal of energy breaking down
all kinds of prison walls and striking off the chains that bind
blind people. Sometimes the job requires that we insist on the
right to good rehabilitation training. Sometimes we must fight for
legal protections for those demanding equal treatment. And
sometimes we are called upon to struggle against the temptation to
sit back and let others do things for us. Here is Christine Boone's
story of such a struggle:
The first white flakes of winter swept past us on the wind as
my children and I hurried along the sidewalk toward home. As we
reached the corner, I took a small hand in each of mine, listened
carefully above the sound of the wind, and asked my son Edward if
he thought it was safe for us to cross. "Yes Mommy, it's cold!"
I admonished, "Look to your left; do you see that car coming?"
"Oh yes, we have to wait, Mommy. I knew that."
"Well if you knew that, why did you say we could go?" I asked
as the car sped past on the already-damp street.
"I don't know; I just did," he replied in the matter-of-fact
tone of a three-and-a-half-year-old.
I bent down and repeated the old "Stop, look, and listen"
routine for what seemed like the hundredth time. Then we crossed
the street together, hurried the last quarter block, and stepped
gratefully into the snug warmth of our home.
Later, as I baked a batch of Halloween cookies while Edward
and Katie took afternoon naps, I pondered the events of the
morning. Was there anything so unusual about our walk together? Not
really. These walks had become something of a routine since my
decision to take a year off from work and stay home with my little
ones. It was a good routine at that--one which we all treasured.
There was a bouquet of fall leaves on the buffet--leaves gathered
lovingly by the children and carried carefully home, where I
arranged them in a basket which was proudly displayed for all to
see. Edward and Katie did not wonder at the ability of a blind
mother to make a fall decoration or to keep them out of harm's way
during a walk along the highways and byways of Albuquerque. Nor
should they wonder about such things. For me, as for countless
other blind men and women today, the absence of eyesight is an
inconvenience at times but nothing more. But it had not always been
that way for me.
In 1977 I entered college at the University of Colorado. To
say that I was painfully shy would be the understatement of the
decade. Julie, my roommate, was also not long on courage, but
people seemed to warm to her somehow, while I, in my need to
exhibit an independence which I did not feel, tended to push people
away without realizing it. At any rate, there we were, both blind
but neither choosing to admit it. We shuffled around campus never,
of course, carrying canes; yet somehow, by the grace of God and our
fellow students who occasionally took pity on us, managing to make
it to most of our classes.
As the months passed, we grew more accustomed to the layout of
the campus and a little less frightened about venturing forth. Then
we began receiving phone calls about an organization of blind
people which met every month in Boulder. At first we had no
intention of associating with "those blind people." But the woman
who called us--Anne was her name--was always so kind, and it never
seemed to offend her that we didn't attend her meetings. So after
a few months we broke down and said yes.
How well I remember that first meeting! It was run very
efficiently by a blind president. The books seemed to be well-kept
by a blind treasurer. The minutes were thorough and were quickly
read in Braille by a blind secretary. Most impressive of all,
however, was what happened after the meeting adjourned. All of
those blind people left for their homes; they just left! It was
dark outside, and I, caneless, was feeling a bit nervous about
walking the three blocks to my sorority house. And here were these
blind people just tapping their canes in front of them and heading
off down the street or to the bus stop, without concern or
hesitation. That night marked the beginning of a richer life for
me, a life full of freedom and adventure.
Julie and I both began to use canes. She was already
enlightened enough to use Braille regularly and well, and she
encouraged me to use it too. I had learned the system in high
school but had never really used it in my daily life. Our other
Federation friends taught us the finer points of cane travel, and
we soon began taking part in national conventions, Washington
Seminars, NAC-tracking, and other Federation activities. Before we
quite knew what had happened, we were confident, competent blind
people, graduating from college. The year was 1981.
In 1982 I moved to Nebraska to take a job with the Nebraska
Services for the Visually Impaired, and before long I was
teaching cane travel to blind adults in the Orientation Center
there. While in Nebraska, I met and married my husband Doug.
Because Doug is also a cane travel instructor and a truly
enlightened sighted person, he expected and demanded that I, as a
blind person, live what we taught in the Center; and this belief in
me, together with my continued work as a travel teacher, brought me
to the pinnacle of my own independence. There was really nothing I
thought I could not do and nowhere I thought I could not go. It was
a wonderful feeling, one I thought I would never lose.
Then, in the winter of 1987, we moved to the wild Pacific
coast of Oregon, where Doug had taken a job with the Oregon
Commission for the Blind. For the first time in my adult life, I
found myself unemployed and living in a small town with no public
transportation. True, Lincoln City did have a cab--one little car,
driven by one man who routinely left town for a day or two at a
time, taking with him my only transit. Furthermore, though the town
was only a half mile wide, it was seven miles long, which meant
that walking to most stores and other businesses involved trekking
two or three miles each way, usually in the rain--an exercise I did
not relish.
Well there I was, watching the cold, gray winter change
imperceptibly to the cold, gray summer and wondering what to do
with myself. I went to the nearest unemployment office (forty miles
away) and filled out applications. I sent out resumes, had some
interviews, became pregnant, and volunteered two days a week at the
local Chamber of Commerce as a tourist information specialist.
After ten months on the coast, we were transferred to
Portland, where I immediately lumbered to the nearest bus stop and
rode off in a state of exhilaration to visit my obstetrician. In
the weeks that followed, I traversed the hills of Portland, both on
foot and by bus. Then Edward was born, and I settled into a routine
which did not involve much in the way of independent travel. It was
very easy for me to rationalize this new behavior. There were no
sidewalks in our part of town, and we lived near a busy street. It
would be extremely dangerous for me to wheel Edward in his stroller
along Garden Home Road with its speeding drivers, steep ditches,
and sharp curves. Of course, the bus stop was on our corner, and I
did not even need to transfer to reach the grocery store, the mall,
or the downtown area beyond. Nevertheless, I generally confined
myself to walking the quiet streets of our neighborhood, taking the
bus only once to the grocery store, and riding downtown or to the
mall only if I had a very pressing reason.
Then it was time for the National Convention in Chicago, and
we packed up the baby and set out, ready to see old friends and
learn new things. When we arrived, I was unprepared for the
feelings of insecurity which overwhelmed me as we stepped through
the door of the Hyatt into that throng of Federationists. No, it
was not my first convention, far from it! I had participated in
conventions for years, teaching cane travel seminars, working crowd
control, and helping people to learn their way around the hotels
and surrounding areas. Yet this year was different--gone was the
confidence which I had once taken for granted, and I slipped almost
unconsciously into the pattern I had begun to follow at home. I
went everywhere with Doug, not using sighted guide technique, of
course, but following him or waiting for him to tell me which way
we needed to go. Even more startling was the fact that he was as
unaware of the change as I and did nothing to encourage me to
strike out on my own. The decrease in my independence had occurred
so gradually that neither of us recognized the change. You see, it
is true: skills which we do not use, we begin to lose. It becomes
all too easy to rationalize this loss of independence and, almost
inevitably, of the self-worth that accompanies it without realizing
the extent to which in so doing we jeopardize our own self-respect
as well as the respect of others. Fortunately for me, my colleagues
in the National Federation of the Blind are the best kind of
friends anyone could have. They were not about to let me compromise
the independence which I had worked so hard to attain.
It was about the third day of the convention, and I was having
lunch with Rosemary Lerdahl. Rosemary had been my supervisor when
I taught in the Orientation Center, and she is a dear friend and a
wonderful person. She began asking me about the things I had done
since coming to Chicago. After listening to my answers, she
suggested that I take in the Exhibit Hall, the Taste of Chicago,
and the shopping when convention wasn't in session. I explained how
difficult it was to do all those things with a baby along, and she
looked over at Edward, who was intermittently watching the
waterfall and smiling at passers-by. She calmly remarked that he
might enjoy some of those attractions too, and besides, there was
childcare. What could I say? I summoned up all of my nerve and
asked quietly, "Rose, do you think I'm incompetent; I mean, have I
lost my skills?"
"Well I have noticed that they seem a little rusty, and I
think you have lost a little of your self-confidence." Her reply
confirmed my worst fears. My independence was gone, and everybody
knew it. Federationists are not oblivious; they know when a
colleague who once traveled independently and well ceases to do so,
but neither are Federationists judgmental or critical. We stand
ready to lend help and support in enabling one another to be the
best we can. In keeping with this precept, Rosemary did not
criticize me or ask how I could have let my independence slip and
my confidence erode.
The next morning, when we left our hotel room, Doug walked
silently beside me, stopping whenever we came to a turning to let
me decide which way we needed to go. Lo and behold, we made it to
breakfast quickly and without incident. Afterward I found the
Oregon delegation, went to work at the information desk, and at
noon went off alone to find lunch for my fellow workers. No, these
were not milestones; indeed I have done all of them at conventions
since without giving them a second thought. But that day marked the
beginning of my return to excellence--the excellence I must
maintain if I am to serve as a representative of the National
Federation of the Blind. At the end of the day I was exhilarated!
I had not lost my independence forever; it had merely taken a back
seat for a time, and as a result I had begun to feel unsure of
myself. I thank Heaven for that lunch with Rosemary and for her
honesty and encouragement.
I returned to Portland and set to work removing the tarnish
from my travel skills. Edward and I went to the mall to buy a
birthday gift for Doug. We took the bus downtown and met him for
lunch. Edward even came along while I taught cane travel to some
Federationists in the Portland area. A few months later we moved
here to Albuquerque, New Mexico, where Doug joined Fred Schroeder's
team at the Commission for the Blind, and Edward and I hit the road
again. After all, there is much to be done when you move to a new
town. Yes, I had a few butterflies the first time we set out for
the bus stop, but we traveled around the city easily and without
incident as Edward rode comfortably on my back, dozing in our warm
New Mexico sunshine.
How fortunate I am to be a part of the National Federation of
the Blind. It was through the NFB that I first learned about
independence, acquired a long white cane, got my first real job,
and met my fantastic husband. When I unwittingly let my skills grow
rusty and my confidence seep away, it was the Federation that got
me back on track again. Independence is a treasure, a hard-earned
reward for a job well done. Whether we know it or not, in
everything we do, we teach. So let us all protect this hard-won
treasure and pass it on whenever we can.
THE BUDDY SYSTEM PROGRAM: PATHWAY TO INDEPENDENCE
by Pamela Dubel
Reprinted from the Fall, 1991, issue of Wings, the Buddy System
Newsletter, Louisiana.
Growing up as a blind child, I attended a variety of summer
programs designed to teach the alternative techniques of blindness
such as Braille and cane travel. Although the programs were well
intended, they seldom succeeded in providing quality training. They
were missing the key element! That is, they lacked competent blind
adult role models. Without them, I did not develop the confidence
in my ability to perform these skills or in myself as a blind
person.
Fortunately, times are beginning to change. Today there is an
innovative program which strives to give children quality training
and confidence in themselves as blind people. For the past two
summers I have had the wonderful opportunity to work in the Buddy
System program at the Louisiana Center for the Blind in Ruston.
Over the past three years the Buddy System has touched the lives of
over thirty children and their families. The program's main goal is
to show blind children and their parents that it is respectable to
be blind. Blindness does not mean sitting on the street corner
selling pencils. It is not a tragedy or a punishment. Blindness is
merely a characteristic like blue eyes or brown hair. With equal
opportunity and quality training, a blind person can do the same
things as a sighted person.
The Buddy System fosters positive attitudes about blindness in
a variety of ways. Since the counselors/instructors are blind, the
children learn effective techniques from successful blind adults.
Classes are taught in Braille, cane travel, computers/typing, and
daily living skills. For five weeks the Buddy System participants
are submerged in a positive and challenging environment. There is,
however, an ample amount of fun thrown in for everyone. Hot air
ballooning, horseback riding, camping, and water skiing were only
a few of the activities that the children and I enjoyed.
Although five weeks may not sound like a long time, it was
amazing to watch the tremendous growth that occurred. The children
began to realize that it had been their attitudes and not their
blindness that had prevented them from reaching their goals.
Participation in the Buddy System marked the first step on the
journey to independence. I feel honored to have been part of such
an instructive, innovative program. As our motto in the Buddy
System says--"Together We Are Changing What It Means To Be Blind!"
Dear Reader,
My name is Jennifer Lawson and I am thirteen years old. I am
from Loreauville, Louisiana. I spent most of my summer as a student
at the Louisiana Center for the Blind in Ruston. I was part of the
"Buddy System" program.
I learned a lot of things that I didn't know before. I also
learned more about the cane than I already knew. I learned that I
shouldn't be embarrassed to go places with my cane because people
will stare at me more if I don't use it than if I do. I am more
confident about crossing streets. I also learned how to cook and
clean by using alternative techniques (that means when we use our
other senses instead of our eyes). We also have seminars when we
talk about being blind. I now feel much better about being blind.
Blind people can do anything!
Dear Reader,
My name is Emily Fuselier. I live in St. Martinville,
Louisiana. I am 14 years old. I am a participant in the Buddy
Program at the Louisiana Center for the Blind in Ruston. I was born
blind, but my mother can't pronounce the eye condition I have. I
have been going to school since I was 3 months old. I went to the
Louisiana School for the Blind in Baton Rouge until the 7th
grade.It was harder for me in public school, but it helped me deal
with sighted people better.
Beginning in the summer of 1991, I entered the Buddy Program
which teaches me good cane travel skills, independent living
skills, Braille, and computers. In the apartment we learned how to
cook for ourselves and do house work.
In cane travel we learned to cross streets, find addresses,
and go on independent routes. We also learned the proper way to use
a cane. All this was done under sleepshades. The instructor was
Harold Wilson.
In independent living we learned how to mop, sweep, vacuum,
dust, iron, and wash clothes under sleepshades. The instructor was
Kisa Hampton.
In computers we worked on the Apple, the IBM, and the
typewriter. I have learned WordPerfect and have increased my typing
speed. The teacher was Melissa Lagroue.
In Braille class we practiced reading and writing in Braille.
We learned how to use slates (which are very helpful). I was timed
on my slate and I wrote 10.6 words per minute. I am faster each
day. My instructor was Pam Dubel. She was also my counselor.
After class we had seminars. We talked about dealing with
people; we also talked about being blind. I know that I can be
blind and be confident and independent. I have really enjoyed this
program!
Dear Reader,
My name is Rosalinda DeRouen and I am from New Orleans. I am
12 years old. I am in the Buddy program at the Louisiana Center for
the Blind with 6 other blind children. Our counselors are also
blind. During the summer we had classes in computers, Braille, cane
travel, and independent living. I have learned how to cook and
clean. I have been camping, swimming, shopping, and horseback
riding. I have also learned how to use my cane so I do not have to
hang on to other people. I am happy to say that I am no longer
afraid of the stove and the grill. I know how to do many things
which will make me more independent. I now realize that I am blind
and that it is okay!
Dear Reader,
My name Alycia Parr. I am 11 years old. I have learned a lot
in the Buddy System. I learned how to cook, clean, shop, and use my
cane. I finally know the streets. We also do lots of fun things
like camping and horseback riding.
The cane is very helpful; when I come to a sidewalk, I will be
able to tell where it is. I also learned how to use a slate. It's
very useful. When I want to write, I can bring it with me wherever
I want. I don't have to lug around a 20-pound Brailler.
Dear Reader,
My name is Jasmine Sethi, and I am 12 years old. I am from New
Jersey, but I came to Louisiana to be in the Buddy System program
at the Louisiana Center for the Blind. The program lasted 5 weeks.
This program teaches alternative techniques for doing simple things
like pouring and harder things like cane travel. We are taught to
do things without using our eyes; instead we use our ears, noses,
mouths, and fingers. I came without the ability to cook, and I am
leaving with the ability to cook if I have a recipe to follow. The
program has also provided me with new experiences. Just a few
examples are: fishing, inner-tubing, and hot air ballooning.
However, the most important lesson I learned is that I am blind and
that it is okay to be blind. I have benefitted from this program,
and others have as well.
Dear Reader,
My name is Sham Hasberry, and I am in the Buddy System program
at the Louisiana Center for the Blind. I've learned how to use my
cane properly. At first I didn't know how to use a cane at all. I
have learned some grade two Braille also. My Braille teacher's name
is Pam. Just in case my Mother yells at me, Kisa has helped me
learn how to clean up.
The first day I came to the Center I was a little nervous, but
Harold taught me about the cane. This is a really good place to
learn. Even though it's five weeks, it's a really good program.
It was really sort of surprising and neat that I learned how
to use the cane, and it has really helped me. I have a little
sight, but my friends in the Buddy System have taught me some
techniques that I can use without having to rely on my little bit
of sight--and that's very helpful to me.
CONNECTICUT PARENTS SEMINAR:
"Growing Up With Blindness"
by Sandy Killion
On March 14 the National Federation of the Blind of
Connecticut sponsored a seminar for parents of blind children
entitled "Growing Up With Blindness."
Right at the door, a Braille 'n' Speak machine caught parents'
attention as they registered. Cherie Heppe, the nice lady working
the machine, patiently and enthusiastically explained its uses to
us and extolled its virtues. After you got in the door, you came to
a table Betty Woodward had set up with a wealth of information--
pamphlets, books, lists, articles, supply lists, and legislative
notes. With that propitious beginning, the afternoon got off to an
informative format of sharing ideas, experiences, and suggestions.
Throughout the afternoon, the importance of Braille was hammered
into us by each person who spoke. As the parent of a two-time
winner of the state level Braille Readers Are Leaders contest, I
can attest to the truth of their comments. Braille is silent, needs
no batteries, is portable, and has no working parts to break down;
and the books are free from the library (or inexpensive from
Seedlings, etc.). Also, the superiority of the slate and stylus
method of note-taking was emphasized (in spite of some people's
initial resistance to learning it) as being quick, silent, needing
no transcription, and being available for instant reference.
The rights of parents were outlined by Barbara Cheadle, the
editor of Future Reflections and a parent of a blind child. She
also brought along a brochure of ways to deal with the IEP
(individual education plan) process in planning for a child's
educational needs. We as parents need to be educated and confident
about our child's needs and abilities when we go into such meetings
if we are to gain the necessary services our children need and
deserve.
The three blind panelists and two parents spoke eloquently of
learning how being equal to sighted peers did not mean being able
to do absolutely everything those peers could do. Mark Stracks, now
a medical student, told humorously of trying, unsuccessfully, to
play basketball and tennis. Barbara Cheadle used an anecdote about
her son to point out how any physical characteristic can be a
limitation--such as being short or tall--and that blindness is just
another physical characteristic.
Mark Tardiff, now a counselor at Marcy Housing and Shelter
Corp., had gone to Perkins School for the Blind from the age of
five, in spite of some well-meaning folks who advised his parents
that a blind child had no need for school since his future would be
so limited. Christopher Kuczynski, an attorney, shared his
experience in a mainstream education setting, and spoke
convincingly about the combined power of parents when they belong
to organizations like the NFB.
The main thrust of everyone's comments seemed to be that blind
children need a wide variety of experiences and opportunities, and
they need to believe that they are capable people...which is what
every child needs.
Formation of a parent division of the NFB of Connecticut was
discussed. The people present expressed a desire to start such a
group. The time and place of the next meeting will be decided in
the near future, and meanwhile word needs to be spread that a group
is forming to meet the needs of parents of blind children in our
state.
As a parent, I enjoyed hearing from "survivors" of childhood
and some of their suggestions for making our children's lives
successful. The parents in the audience asked probing and
insightful questions that indicated they had sought hard and long
to give their children the future they are entitled to. I, for one
am looking forward to the next meeting as an enriching experience.
HOMESCHOOLING THE BLIND, MULTIHANDICAPPED CHILD
by Sandy Karpenko
In the year 1978, we decided to take foster children into our
home. The first placement was a darling little 4-year-old. He just
melted our hearts, and we think of him often and wonder how his
life has turned out so far. The second child we had was a precious
blind baby that I picked up right from the hospital at 3 1/2 weeks
of age. She had been placed by her parents because they emotionally
could not handle the handicaps she faced. She was thought by the
doctors to be no more than a vegetable for life, with no guarantee
of even being able to sit up or use her hands for anything.
After six months the parents, having no more encouragement
from the doctors, extended her care in our home to a year. At the
end of the year they were to make a final decision--take her home,
place her in a state facility, or release her for adoption. It was
a very, very difficult decision for them. It seemed that for them,
in their emotional state, it was a "no win" decision either way.
They were not uncaring people, or unloving. They had a two-year-old
daughter who was a real handful, and the mom was just a "basket
case" emotionally. We certainly have a very real understanding of
the anguish involved in such a decision. In the end they asked us
if we had ever considered adopting their daughter, and we admitted
that we had. The following week the papers were drawn up, and the
legal process began, making us Sarah's legal parents. She seemed to
fit into our family from day one, and our five older children just
loved her. They didn't think of her as handicapped--just special,
and particularly beautiful.
Sarah was born with an encephalocele (a large sack on the back
of her head) containing fibrous tissue and part of her brain. The
sack (including the part of her brain) was removed the day after
birth. She remains totally blind, is severely retarded, and has
been seizure-active since birth. She has Cerebral Palsy which
affects her legs in particular. She will bear no weight on her feet
to speak of, and moves around by rolling only when it is
uncomfortable to stay in one position. She is so content she will
literally stay in one position for hours as long as she has
something to play with that she enjoys. She is undoubtedly the
happiest child I have ever seen, and she gives the best hugs and
kisses of anyone in the world! She is happy, outgoing, (even though
she says only a dozen or so words), and unusually affectionate--not
at all a vegetable.
When Sarah was ten months old we enrolled her in a program
through our local school system in Rochester, New York. It was a
VIP program (Visually Impaired Preschoolers) in our home, where the
physical, occupational, mobility, and speech therapists came
directly to us. The therapists were wonderful, and through the
tears of objection Sarah began to show signs of improvement. She
sat up, rolled over, and objected less to the introduction of new
toys. We went two steps forward, one step back, and have continued
to do so through the years. Those therapists taught me as well as
Sarah, and we followed through with the "teaching" during our hours
alone. We will always be thankful for those wonderful people.
Then, it came time for her to go to school. We were now living
in the Thousand Island Region of New York, away from the bigger
city, and there were fewer options open to us (home schooling never
occurred to us at the time). Sarah took a bus thirty-five miles to
school and thirty-five miles home each day, falling asleep daily on
the bus and being cranky and miserable much of each afternoon
because she still needed a nap. We were as frustrated as she but
saw no way out. The teachers seemed to be less than professional in
general, and there just didn't seem to be the right placement for
her. They put her where they thought best, but it was never right
for her.
Then we began to see in the Bible where parents were really
the ones responsible for the raising of their children. We had a
family in our church who was interested in home schooling, and the
pastor asked if I would help her get information. I did. And she
got all set and started teaching. Finally, the Lord sort of tapped
us on the shoulder and said "Hey, what makes Sarah any different?
She's a child and you're responsible for her. So what if she's
handicapped? Deuteronomy 6:6,7 was written for her as well as the
next child." That was it. Within a week, we took her out of school.
It was the middle of an optional summer program, and it was not
necessary to inform the school of the reason for her absence.
We contacted HSLDA (Home School Legal Defense Association) and
were sent an application form. We completed it and then, the week
before school began, we sent our letter of intent to home school to
the district superintendent. He very quickly replied and made some
demands on us (which we knew were not legally required). We very
politely refused his offers of "help", and have had no contact
since, except for the New York State required quarterly and yearly
reports.
It is very easy to home school in New York with a minimum of
interference from the school districts as long as you follow the
regulations. You don't have to have any special requirements, just
a desire to teach your own child and some form of curriculum. We
wrote our own from the reports the public school had written,
originally using the same goals and methods. We have since changed
those goals to some that we feel are more realistic, and Sarah is
doing very well. Our goals and achievements have consistently been
approved by our district superintendent. Sarah no longer comes home
with any unexplained bruises from people probably lifting her
incorrectly, and she gets her nap whenever she needs it. And most
of all, she is being taught by the people who love her and know her
best--her parents. She is being taught how to live in the
environment and with the people that will be with her for life, not
in a place where we never interact as a family and/or spend leisure
time.
We are fortunate here to have a Public Health System that
provides us with a respite care. My husband is a pastor, and we
sometimes have appointments or services that are just a little too
much for Sarah to handle. So we have our hours scheduled each week
to fit our schedule at church. We can also call for help if we just
want to go out to supper by ourselves, although last minute hours
are not easy to get. This is paid by insurance. Unfortunately, most
families don't have the advantage of a free service like this, and
we count ourselves extremely blessed.
We firmly believe that Sarah lost much valuable time while
attending public school special education classes. She had a
teacher for two years who was qualified to bag groceries at best,
and all the complaining to the head of the board of education got
us parents nowhere until she was fired at the end of the second
year. Meanwhile, our children had become stagnant, some even
regressing (like Sarah), and we were helpless to do a thing. Sarah
then had a wonderful, dedicated teacher who had a tremendous amount
to make up for in what was lost in the previous two years. But it
still was not the best situation for our daughter. Her stubbornness
had only been compounded, and eating was a fight to the finish at
most meals. (The former teacher had stood behind the wheel chair,
arm under Sarah's chin, and force-fed her while she screamed). She
would literally starve to death willingly. We had a lot of
"undoing" to do before we could go forward very much.
I tried to be very structured in the beginning. I started at
8:00 a.m. and stopped at 11:30 a.m., and worked for an hour or two
after nap--Yuk! It didn't work. I found I was being a slave to the
clock, and Sarah wasn't having any fun. Now we do certain things
like learning body parts while she gets dressed or she sits on the
edge of the bed for a few minutes to do some balancing, a few leg
stretches, range of motion exercises, and then into her wheelchair.
She works on feeding herself her cereal (doing great), and then a
little seat work, which for her is playing my autoharp or guitar
(small finger muscle exercise). Then, maybe she'll take pegs out of
the board or finger paint with chocolate pudding (not one of her
favorites)! Then she does a little standing while supported between
my legs, and then some hopping on the edge of the couch. Then she's
free on the floor to play the rest of the morning while I get the
dishes done, beds made, or whatever other things need to be tended.
When she gets bored, then it's time to do some more work. We keep
it flexible and do lots of things that wouldn't be done as a
regular part of the curriculum at school, as you can imagine. It
seems that a child like Sarah will find a toy and want to play with
nothing else all day. At first I was not allowing her to do this,
but now I find that she's happier and easier to work with (like all
of us) when she's having a good time. Some days we never get to
gross motor skills, and some days we sing all day long--joyful
noises to the Lord! We put in our required hours along the way--
some days more, some days less--but Sarah is happy, rested, and
being taught by loving parents, the way it was meant to be.
New York requires 900 hours of teaching a year, from July 1st
to July 1st, and we have never had a problem achieving this. Her
education is in just about everything we do, from morning to night.
Do I ever want to quit? Sure! But then I think of the commands the
Lord gave us, and I think of the bruises, and the napless days and
long hours for Sarah, and teachers who will force feed her and let
her cry while they stand around drinking Pepsi, and I change my
mind so fast. This is the child the Lord gave us, a very special
child who needs very special care, and I wouldn't dream of changing
a thing.
Home schooling isn't going to be for everyone. I realize this.
But some parents may have never considered it as an option at all.
There are agencies to help with therapy, and in our state I could
even take her to the school just for the therapies she needs. There
are now national networks just for handicapped home schoolers.
There are local support groups all over the country to assist the
growing number of parents who desire to school their children at
home; and there is an increase in the curriculums available,
enabling parents to fit the curriculum to any child's specific
needs. This is the bottom line--a child's specific needs. If your
child is not thriving, or if you feel the school placement isn't
right and a right one is not available where you live, home
schooling may be just the answer for you.
ON BECOMING A WISE CONSUMER OF LOW VISION SERVICES
by Eileen Rivera, M.B.A.
Editor's Note: The following article is reprinted from the April,
1991, Braille Monitor. It is an expanded version of the remarks Ms.
Rivera made to parents at the July 1, 1990, Parents of Blind
Children Division Seminar in Dallas, Texas. At the time, Ms. Rivera
was the Administrative Director of the Wilmer Vision Research and
Rehabilitation Center at Johns Hopkins University. Those interested
in purchasing low vision services and/or equipment will appreciate
Ms. Rivera's sound approach to low vision.
I want to share with you some practical information about low
vision. My experience is both personal and professional. I will
begin by explaining the nature of low vision programs. Then I will
give you some pointers on how to get the best low vision services
for your child. But first, let me share with you two conversations
I have had with low vision specialists.
Recently one of my favorite low vision specialists at Wilmer
related to me a most disturbing experience. After evaluating a
middle-aged woman with low vision, she had recommended that the
woman learn to travel independently using a white cane. When she
relayed this to the referring ophthalmologist, he was irate and
retorted, "This is the last time I will refer patients to you! I
sent this woman so that you would help her see, not for you to make
her blind!" You can see that even the best low vision specialists
regularly encounter resistance when advocating nonvisual
techniques.
This misguided physician thinks that a low vision technique
which uses vision is by definition superior to an alternative
no-vision technique, even when the latter is safer and more
effective.
I have met low vision specialists who spend hours dreaming up
reasons why blind people with residual vision reject traditional
low vision solutions. One of the most outrageous explanations went
something like this, "I get so angry when my patients insist on
calling themselves blind! I tell them, `As long as you can see
something, you are not blind!'" But it gets worse. This specialist
is convinced that we insist on thinking of ourselves as blind
because we enjoy some vague mystical secondary gains of
blindness--gains like extra doses of paternalism and custodialism,
I suppose. Luckily, this so-called expert does not work at Wilmer.
These conversations underscore the false assumption that our
alternative techniques must be either completely visual or
completely nonvisual. In reality, many effective systems are not
either/or. Each of us, blind or sighted, regularly uses a
combination of senses in everyday tasks. Well-informed blind
persons with residual vision regularly use this vision when it is
convenient and comfortable, which is a fine thing. Nevertheless,
far too many legally blind individuals are encouraged to rely
solely on vision even when such reliance is uncomfortable and
inefficient. Once our low vision blind kids understand their
options fully, they will be able to make sound decisions about when
and when not to use vision.
Unfortunately many low vision blind people never have the
opportunity to learn to make the most of their other senses. Hence
they cling to their vision to the detriment of their overall
efficiency.
One program at the Johns Hopkins Wilmer Eye Institute is
different. When we started it, we began by challenging the notions
of the standard delivery of low vision services and are now
developing more sensible delivery systems. While the primary goal
of other low vision clinical programs is to maximize the use of
vision, our goal is to integrate both visual and nonvisual
solutions to maximize true effectiveness and independence.
We also began with the realization that, while some of the
currently available low vision technology is very good, an awful
lot of it is only narrowly useful--too expensive, restrictive and
difficult to use. Therefore much of our energy is devoted to
designing the technology of the future.
What is low vision? The professionals ordinarily define low
vision as best corrected visual acuity below 20/70. The legally
blind are only a subset of the entire low vision population. So it
follows that not all low vision solutions will be appropriate for
our blind kids.
Low vision specialists are trained to evaluate functional
vision beyond visual acuity. In fact, visual acuity is only one
measure of vision, and an imperfect one at that. While both my
sister Mildred and I are highly myopic, with the same visual
acuity, we have very different functional vision due to different
secondary eye conditions. We respond quite differently to light,
glare, colors, contrast, and motion. We do share a high risk for
retinal detachments and further vision loss.
Visual field defects or blind spots have profound effects on
vision. For example, a blind spot obscuring the central field can
make reading impossible, even for a child with an overall visual
acuity of 20/70.
Who uses low vision services? Well, the average low vision
patient at Wilmer is a sixty-seven-year-old woman with age-related
macular degeneration. She has a blind spot obscuring her central
vision, and her visual acuity is at 20/120. Her reported prognosis
is "better than legal blindness." Her goals are to find a way to
write checks and read her phone bill, grocery price tags, and daily
paper.
As you approach the low vision system, understand that the
majority of patients in any low vision service are senior citizens
encountering visual impairment for the first time. Accustomed to
functioning visually, they are seeking a quick fix, a way to get by
in their later years. These seniors are not seeking to compete
effectively with sighted peers at school or work. And even though
they might very well benefit from mastering the alternative
techniques of blindness, their fears interfere with any prospects
of successful rehabilitation.
I have found all sorts of misguided, damaging, and
paternalistic attitudes in professional low vision literature of
the 1980s. As parents you will want to be aware of the varied
thinking in the field. Always ask, "Is this approach best for my
child?"
In Irving R. Dickman's book, Making Life More Livable, with
all that this title implies, I find extensive material about
survival as an older visually impaired person. I read chapters
about the need to modify the environment for the visually impaired.
Twelve pages are sufficient to address the issues of employment and
recreation for the blind. (Rami Rabby, how did you manage to write
a 336-page print book on jobs?) In Dickman's book a mere two pages
were devoted to the possibility of venturing outside the home as a
blind or visually impaired person.
Making Life More Livable offers the following interpretation
of life with low vision:
For the two-thirds of older people whose vision has become
noticeably weaker, the comforts of home may dwindle: television
becomes radio, sewing and hobbies become guessing games, and the
joys of cooking become fond memories. [p. 2]
Sharp edges can be lethal, and low coffee tables almost
guarantee barked shins or worse.... Strategically placed furniture
can help the visually impaired in crossing [the] seemingly vast
spaces of an open living room. [p. 11]
For those with the most severe vision problems, home may no
longer be the safe haven it used to be. Steps become icy slides, a
hallway is a perilous passage.... [p. 3]
Getting through the day can be fatiguing and deeply worrisome,
because of the greater amount of energy needed to assimilate visual
information. [p. 16]
If the prospects of low vision are so bleak, one has to wonder
if it wouldn't be simpler to be totally blind.
As you might expect, Braille and cane travel are barely
discussed. Let's examine the alternative techniques which are
offered--some of these truly are inferior:
--Use a lighted magnifier to set your stove dial. (Very safe,
unless you have hair.)
--Use a magnifier to check the roast for doneness. (The authors
obviously never tried this--the lens would instantly steam up!)
--Vary the contrast of your dinner plate with that of your food.
(What color plate might one use to serve both steak and potatoes?
Should one avoid meals out, or should one just bring along some
extra china?)
When evaluating a low vision technique, you must think, how
would a totally blind person do this? Most of my blind friends have
no problem locating and consuming all kinds of food.
The piece of advice at the top of Dickman's list was for those
who bump into doors because they are looking at their feet as they
walk: "Have someone remove the door." Remembering to close the door
made the bottom of the list.
The book provides all manner of low vision advice on carrying
water from the sink to the stove without spilling it, finding and
turning on the bedroom light, locating small objects on a bedside
table, seeing how much water is in the tub (float a
brightly-colored toy in the bath water, perhaps an orange rubber
ducky), not scalding oneself, and finding the bath towel, soap,
toilet seat, and toilet tissue (color-contrasting of course).
From these examples, one might conclude that common sense is
as fleeting as vision and youth. But enough of such nonsense. There
are truly good applications of low vision technology, and there are
places in the country where low vision specialists are being
trained to maximize function rather than vision.
What are the typical low vision devices? They include such
optical systems as high-powered reading glasses, magnifiers,
telescopes, binoculars, and Closed Circuit Televisions (CCTVs) as
well as non-optical devices like bold line paper, felt tip pens,
and large print materials, playing cards, games, and checks. At
Wilmer we also consider nonvisual items such as long white canes,
Braille watches, needle threaders, and talking clocks as low vision
devices too. But such an inclusive approach is uncommon in the
field.
Who provides low vision services? A number of professionals
hold themselves out as low vision specialists. At Wilmer our
standard is a doctor of optometry with additional training in low
vision. Ophthalmologists are medical doctors who specialize in the
health of the eye, prescribe medications, and do surgery.
Optometrists, on the other hand, are optical experts. They study
four years to learn the ins and outs of lenses and visual function.
In my opinion the low vision optometrist is better suited to
prescribing optimal lenses and devices for a visually impaired
child than is the ophthalmologist. In fact, most ophthalmologists
are not interested in providing comprehensive low vision services
and prefer to refer their patients to a low vision specialist for
that part of their care.
If your child is obviously using vision, seek out a good low
vision specialist and begin to develop a working relationship with
him or her. It is perfectly natural and acceptable for your child
to use residual vision, as long as it is comfortable and effective.
Blind children with usable residual vision should have a low vision
evaluation every few years. Through such an assessment one can
begin to learn about existing optical systems that make using
vision more comfortable. Since a low vision evaluation requires
extensive participation on the part of the child, he or she must be
old enough to articulate personal preferences and needs. A typical
work-up can take hours, but the better specialists will customize
the evaluation to match a child's attention span.
Parents should prepare for the low vision exam. Plan to be
involved in all stages of the evaluation. Begin observing your
child's visual function. What can he see? How and when does she use
vision? Does he squint? Note reading endurance and typical working
distance. Such information will complement the clinician's visual
assessment. Remember to assure your child that the exam will not
hurt.
In an evaluation, the specialist will usually assess reading,
writing, distance viewing, mobility, and lighting. By defining
concrete tasks or goals to be performed visually, parents can help
the practitioner tailor the evaluation to the child. Some examples
of goals include checking a price tag in the store, studying a road
map, analyzing a graph, reading the ingredients on a cereal box,
sorting mail, finding a phone number, and viewing a landscape or
chalkboard.
Usually the specialist will explore the optical alternatives
first. Be wise consumers. Feel free to ask candid questions about
the practicality of any suggested techniques. For example, some
practical advice for lighting at home might be offered, but ask for
a plan of action for times when lighting is not ideal or
controllable.
Children with progressive diseases may find low vision
services frustrating since prescribed devices may become
ineffective in short order. In such cases parents should evaluate
whether time and resources might be better spent in refining
nonvisual skills such as typing, Braille, and cane travel. These
solutions will last a lifetime.
Feel free to ask questions along the way. Ask for an
explanation of how vision will change as your child matures. Ask
about the significance of presbyopia on low vision blind kids. This
is important since most low vision children depend so heavily on
their ability to focus up close.
Give the clinician permission to be frank. Very often, low
vision specialists feel pressured into encouraging purely visual
techniques in order to avoid resistance from the child, parent,
teacher, or referring ophthalmologist.
Dr. Gary Rubin, one of my colleagues at Wilmer, studies the
performance of low vision readers. His research indicates that a
person must see a minimum of four characters at a time in order to
read at all fluently.
A trained low vision specialist will systematically evaluate
reading by measuring reading speed and accuracy at different print
sizes and documenting the print size of the last good reading.
Having determined the optimal print size, the specialist will
select a magnification system which converts actual print size to
the optimal size. (Incidentally, at Wilmer, we are currently
developing a computerized testing system which will facilitate and
significantly speed up this reading evaluation.)
Low vision reading devices are rather task-specific. One may
need a number of different devices to read assorted print sizes. In
prescribing a reading device, the practitioner must balance the
tradeoffs among print size, field-of-view, and working distance.
The stronger magnifiers require the eye to be less than one inch
from the lens, a less than comfortable position for sustained
reading. Powerful magnifiers also tend to have a small field of
view and so can enlarge only a few characters at a time. These
constraints reduce reading speed.
Beware of the quick fix. A vision teacher might insist upon a
low vision exam in hopes of finding some reading device that might
save her from having to teach Braille. If your child is
significantly visually impaired or is legally blind, insist on
Braille now. There is no effective substitute. Even if Braille is
the secondary medium now, it will likely serve as an excellent
resource in later years, as print size diminishes and reading
requirements increase.
Think carefully about the long term visual functioning of your
child. Endurance is perhaps the most important factor in
determining an optimal reading system. The progressive nature of
the disease must also be considered. Will a low vision optical
system meet all future career needs?
Rarely will a low vision device enable one to curl up
comfortably with a book and read for hours. If the only way your
child can read is by holding a book up to her nose, chances are
that the reading system will become more cumbersome and inadequate
as she matures. This is true even when the visual condition is
reported as stable. Start now to identify nonvisual alternatives.
It's a tragedy to find so many low vision blind students dropping
out of high school and foregoing college. I have observed that
partially sighted kids lacking Braille skills are more likely to
quit school than are their totally blind Braille-reading
classmates.
Low vision consultations usually result in a series of
recommendations based upon the predetermined goals. The better low
vision optometrists will provide you a shopping list of choices,
usually ranging in price and effectiveness. The very best
clinicians will be ready to explain the pros and cons of specific
systems and will introduce nonvisual options as well. If the
information is not offered, ask questions.
Don't expect the average optometrist to be well informed about
nonvisual techniques. Such professionals did not study optics for
four years to spend their time talking about non-optical systems.
Still, ethically, they should be realistic about the ease of use,
practicality, and comfort level of a prescribed device.
Consider the ergonomics (the working conditions) of a device.
Ask about headaches, back pain, and eye strain. Understand the
field-of-view limitations and required lighting conditions. Think
about portability. (Currently available CCTVs are barely luggable.)
Ask them how much practice one needs to use a system effectively.
Is the investment warranted? Ask about the usefulness of the device
as vision declines.
Finally, one must consider the economics. How much are you
willing to spend? Can the school system or vocational
rehabilitation agency purchase the recommended device? They can
usually be persuaded to cover expenses for items used in class.
You might say that I am a classic high partial. I have had a
visual acuity of about 20/200 since birth. As a low vision blind
child, I was never introduced to essential nonvisual skills. My
mobility lessons (if you can call them that) consisted of vision
training, tricks to distinguish between the sidewalk and the grass.
I was encouraged to watch my feet as I walked. Equipped with these
fine travel skills, I never ventured far from home. Braille was
never discussed. Hence I am playing catch-up as an adult.
Today I use a number of practical low vision devices on the
job. I also have a drawer-full of useless gadgets prescribed for me
in my youth. Perhaps my best low vision device is a pair of soft
contact lenses. A long white cane enables me confidently to come
and go as I please. My computer with large print display and
capacity to produce large print text is a valuable tool. And a pair
of sun filters help eliminate bothersome glare--all good things.
Perhaps my favorite low tech low vision aid is a tinted piece of
plastic which reduces glare when placed over a printed page. All of
these are fine tools.
Would you like to hear what is in my reject drawer? Several
pairs of reading glasses, prescription sunglasses, and a
spectacle-mounted telescope. I never found much use for magnifiers
because of the restrictive field of view and their annoying optical
distortions.
The fact that these items don't work for me doesn't mean they
are not helpful for others. The selection and use of low vision
devices are highly individual. The best way to identify useful
devices is to have a comprehensive low vision evaluation. A good
service will allow one to borrow a device to test at home. Of
course, this may not be possible with custom-made items. Remember
that visual goals change as does technology, so plan to return
every few years to see what's new.
Telescopic lenses are big-ticket low vision devices.
Telescopes definitely work. Many people with low vision keep a
telescope handy for occasional spotting tasks, but I know very few
who enjoy using them for extended viewing. My visual acuity
improves significantly through a telescope of perhaps 20/80.
However, this is only through a twelve-degree field-of-view, so
there are tradeoffs.
Some commonly recommended applications of telescopes are
reading a street sign or checking a traffic signal. I find it
quicker to ask a stranger the street name rather than to search for
the sign through the telescope. If the sun is too bright or too
dim, I have difficulty reading the sign even after I have located
it. I sometimes feel awkward and vulnerable standing at an
intersection using both hands to focus my telescope. My fear is
that someone might snatch my pocketbook while I am off guard.
Listening for oncoming traffic before crossing is definitely more
reliable than depending on the color of a traffic signal.
Telescopes are also recommended for viewing the blackboard or
watching a play. I have tried to use a spectacle-mounted telescope
in the classroom. For the first time ever, I could see the writing
on the chalkboard! But, as I worked with the telescope, I became so
absorbed with scanning, focusing, and copying the board material
that I was missing the professor's entire lecture. After a
two-month trial, I decided that using the telescope in this way was
too fatiguing and actually interfered with my learning, so I
returned to other alternative techniques.
Low vision enthusiasts recommend telescopes for extended TV
viewing and watching sports events. I also find this draining. I do
enjoy using the telescope to examine the costumes of a cast in a
play, but then I usually forget about the telescope and enjoy the
show.
Some professionals will blame this lack of enthusiasm for
telescopes on insufficient vision training. But the way I see it is
that the fact that vision enhancement is technically feasible
doesn't automatically make it a good idea. Encourage your kids to
keep their low vision tools in perspective; make sure they have
other alternative skills from which to draw. This way they can have
the best of both worlds.
When seeking low vision services, remember that some low
vision specialists will encourage your kids to use vision at all
cost. Remember that visual and nonvisual techniques need not
compete. They should complement one another. By understanding the
bias of the professionals, you can make the best, most informed
decisions for your low vision blind child now and for the future.
Above all else, trust your instincts!
Finally, let me comment on working effectively with your eye
doctors. Many of them confess that they feel comfortable only when
dealing with eye disorders and the health of the visual system. To
them, blindness is a personal failure. After all, their careers are
devoted to preventing and arresting blindness. This is their bias
and expertise. The majority of physicians lack any specific
training in advising blind patients. They feel unprepared to
discuss vision loss with their patients. Furthermore, since
ophthalmologists spend most of their energies on newly diagnosed
visually impaired persons who lack any training and
self-confidence, they understandably form erroneous conclusions
about the helplessness and hopelessness of the blind. They know
almost nothing about the alternative techniques and strategies used
successfully by the blind.
While ideally we would like all physicians and optometrists to
be fully informed about blindness and to think beyond purely visual
solutions to truly effective and efficient ones, we must be
prepared to make the most of their current knowledge
base--knowledge about vision and the physical workings of the eye.
However, we must reach further. We must devote more energy to
befriending and educating these important eye care professionals.
By introducing them to competent and well adjusted blind persons,
we can teach them where to turn with questions or for advice. We
must begin to reach out to our eye doctors now, for our good, for
their good, and for the good of the next generation.
New Jersey Parents Organize
This report comes from Carol Castellano, the president of our newly
organized NFB Parents of Blind Children Division in New Jersey:
March 13, 1992:
It is with great excitement that I report to you the formation
of the Parents of Blind Children Division of the NFB-NJ. I am
writing now in the warm afterglow of our second meeting which took
place last evening. Five New Jersey Federationists and two other
blind adults generously gave of their time and insight to speak to
a room full of parents and teachers. One mother of an 18-month-old
traveled 2 1/2 hours from across the state to get to our meeting.
I think she found her time well spent; she received much
information in answer to her pertinent questions. After the meeting
she asked how I got to know so many blind people and how she could
organize meetings in her part of the state!
The information we are offering is being well received. It was
gratifying to see that virtually every page of Federation
literature available at our meetings was taken home by parents. On
many days I receive phone calls from parents around the state who
express great interest in our meeting agendas and literature. There
are about 140 families on our mailing list, and the responses are
still coming in. Our monthly newsletter, which will announce
meetings and keep parents informed of happenings in our state, goes
out to parents on our mailing list. We are planning to present a
parents seminar in the fall. We are working on an agenda for that
meeting. We are looking forward to a well-attended state convention
next month. Many parents are planning to be there. The POBC--NFB-NJ
officers are: president, Carol Castellano; first vice president,
Archie Holzer; second vice president, Janice Poracky; secretary,
Elizabeth Klunek; board members: Amy Kaiser, Alice Letche, and
Darlene Scanell.
Helping Children Understand
Aloma Bouma is one of the leaders of the Federation in Nebraska.
She, along with representatives of other disability groups,
recently spoke at a meeting of the Lincoln Association for the
Education of Young Children. The following is a brief report of
their comments as published in the LAEYC Newsletter:
Helping Children Understand People With Disabilities
A brief summary of points raised by David Sipp, Nancy Erickson, and Aloma Bouma,
September 9, 1991 LAEYC meeting.
* Preschool children need information about people with
disabilities. Their questions should be answered honestly and
completely.
* Chances to become familiar with or aware of sign language should
be provided for all children. Children can learn to sign words such
as "hello" or "thank you," and these can be incorporated into the
daily routine.
* People with disabilities should be included matter-of-factly into
the program. Consider, for example, inviting a person in a
wheelchair to visit your classroom as a guest reader. If questions
occur about the wheelchair, they can be answered honestly and
openly.
* Never have children "pretend" to be blind by wearing a blindfold.
This only scares children and does not give them an accurate idea
of what it is like to be blind.
* Before reading stories about children or people with disabilities
to your class, you may want to check with some of the organizations
below to check on the accuracy of the stories. [National Federation
of the Blind of Nebraska and Nebraska Commission for Hearing
Impaired].
* Never refer to people with disabilities as "special." This sets
up unrealistic expectations and only serves to artificially
categorize people. Appreciate each person as a unique individual.
"One To Grow On!"
We have been asked to print the following announcement:
The popular children's cassette story series, "One To Grow
On!" is now available in an audio cassette and Braille read-along
format, complete with tactile pictures, from Braille International,
Inc. "One To Grow On!" stories, written by Trenna Daniells, help
children learn positive values and the difference between right and
wrong. Animal and mythical characters stimulate imagination and
creativity, while music and sound effects engage attention. Raised
dot pictures, produced through a new method devised by Braille
International, Inc., add a unique element to the books, which help
children who are blind build their Braille reading skills while
listening to the audio story. Braille International, Inc. is one
the nation's largest producers of Braille materials. The non-profit
organization also operates the Wm. A. Thomas Book Store. The only
all-Braille retail book store in the nation offers 250 titles of
fiction, non-fiction, children's, and reference books. "One To Grow
On!" stories are available for $10.95 per title. Payment may be
made by MasterCard, VISA, and Discover, as well as checks or money
order. To order titles, or to request a free catalog of all books
available through Braille International, Inc., contact Jeri
Brubaker, publications director, toll-free at 1-800-336-3142. Mail
orders should be sent to Braille International, Inc., 3142 S.E. Jay
Street, Stuart, Florida 34997.
APH Offers Toll-Free Service
We have been asked to print the following announcement:
The American Printing House for the Blind carries hundreds of
products that support the independence of people who are blind or
visually impaired. From Braille, large type, and recorded
publications to educational aids, tools, and supplies--we have
products for learning and for living. Now, if you have any
questions about our products, or if you would like to order any of
them over the phone with a credit card, we'll pay for the call!
Dial 1-800-223-1839. Call between 8:00 a.m. and 4:30 p.m. Eastern
Time, Monday through Friday anywhere in the U.S.A. or Canada. For
all other calls, please continue to use (502) 895-2405.
Eye Patches
The following item is reprinted from the May, 1991, Pediatrics for
Parents newsletter:
The usual treatment for a corneal abrasion (scratch on the
surface of the eye) is an antibiotic drop or ointment and a patch
for 24-48 hours. The antibiotic is to prevent infection, and the
patch is to prevent further scratching. Unfortunately, both are
difficult to do. It's hard to get the antibiotic into your child's
eye, and keeping the patch on is next to impossible. A small
British study found that patching offered no benefit and may
increase the amount of discomfort. The study, done with adults,
found that patching did not expedite healing and actually caused
more pain than no patch. The authors conclude that once any foreign
material is removed from the eye, antibiotics alone are sufficient
treatment for corneal abrasions. Patching is unnecessary, may
increase discomfort, and, at least with children, may only lead to
increased parental aggravation.
--The Lancet, 3/16/91, p. 643.
Kid Tested!
We have been asked to print the following announcement:
Kid Tested [an audio cassette] is written, produced and sung
by Connie Crocket and Morgan Garza, Caterpillar Music Co. The
first-rate lyrics and toe-tapping melodies compel you to sing right
along. (Printed lyrics come with each cassette.) Kid Tested is
wholesome, educational entertainment, promoting positive thoughts
and actions with such ear-pleasing tunes as "Mr. Policeman" and
"It's Okay to Feel." The songs capture childhood good times--"Going
Muddlin" and fantasies--"The Cowboy and Me." Our next project due
this summer is "The Magic Child," a modern fairy tale dealing with
drug abuse. There will be a cassette of the music and a play book
to accompany. (The story is written in play form so it can be
performed or read along with the music.) Kid Tested is available
for $9.98 each plus $1.00 for shipping and handling (also a 7.25%
tax for California residents) from: Flights of Fantasy, 587 F North
Ventu Park Road, #436, Newbury Park, California 91320.
New Museum
This information comes from the April/May, 1992, newsletter of our
newly organized Parents of Blind Children Division of the NFB of
New Jersey:
The recently opened Children's Museum in Paramus, NJ, is a
great place to take a blind child. Inspired by the Please Touch
Museum in Philadelphia, this is a place where children can have
hands-on fun. In an around-the-world maze, children can try on
wooden shoes, make a windmill turn, bang a Chinese gong, and much
more. The rest of the huge museum is separated into
areas--prehistoric caves to walk through complete with cave
paintings and bones; a hospital operating room with skeleton,
doctors' coats, and operating table; a diner with a child-sized
counter and stools, cash registers, and lots of play food; an
ancient world exhibit with child-sized models of the Sphinx and
Greek columns; a real fire truck to climb on, steer, and ring the
bell; a real helicopter (children can put on astronaut suits before
climbing in); a real sailboat; a music room with instruments and
synthesizers; a deep-sea diving room with flippers and goggles and
sharks mounted on the wall; a TV news studio; an area with a real
construction vehicle to climb in and cross sections of doors,
walls, and windows to show how they are built; areas full of
building toys and manipulatives (you can get lots of ideas here);
and much more. The museum has a section on disabilities--children
can ride in a wheelchair and learn how to form their names in sign
from picture cards. The section on blindness at the moment has only
a feeling box, but the museum management seemed very open to
exhibit the tools and alternative techniques that blind people use
to accomplish tasks. I would caution you to have an adult for every
child you bring. The place is huge and separated into sections and
every few minutes we heard an announcement about a lost child.
Strollers are not allowed. The museum would probably be of most
interest to children ages (or developmental ages) 3 to 12. The
admission is $6.00 per person and $7.00 on weekends. Call for hours
and directions: (201) 262-5151.