[Nebraska-Senior-Blind] Future Reflections - see what the NFB has going for YOUTH
Robert Leslie Newman
robertleslienewman at gmail.com
Tue Oct 1 19:01:49 UTC 2019
Hi You All
RE: If you have not read one of these NFB publications, then you are missing
out!
Future Reflections
Volume 38, Number 3 Fall 2019
A Magazine for Parents and Teachers of Blind Children published by the
American Action Fund for Blind Children and Adults in partnership with the
National Organization of Parents of Blind Children
Deborah Kent Stein, Editor
ISSN 0883-3419
Copyright 2019 American Action Fund for Blind Children and Adults
For more information about blindness and children, contact:
National Organization of Parents of Blind Children
200 E. Wells Street at Jernigan Place
Baltimore, MD 21230
410-659-9314
www.nfb.org/nopbc <http://www.nfb.org/nopbc>
Contact the editor at dkent5817 at att.net <mailto:dkent5817 at att.net>
TABLE OF CONTENTS
FEATURE
Happy Birthday, Dear Seedlings!
TEACHING
The Braille Monster: A New Take on Flashcards for Blind Kids
by A PDRIB Contributor
Victory Dance: Reversing the Roles of Teacher and Student for a Day
by Treva Olivero
Dear Teachers, Please Presume Competence When You Work with My Child
by Crystal Kostick
ORIENTATION AND MOBILITY
The Preschool Child Can Be a Cane User
An Article Review by Merry-Noel Chamberlain
Rocking Revisited
by Elaine McHugh
How Do You Get Around? There's No One Strategy to Get There
by Sheri Wells-Jensen
BRAILLE
For the Love of Reading
by Angela Shambarger
The Encyclopedia and Me
by Robert Jaquiss
PASSAGES
Singing into the Mainstream
by Katie Sears
Paths and Transitions
by Mausam Mehta
DIVERSITY
Optic Nerve Hypoplasia: Unraveling the Mysteries
by Christopher Sabine
FINANCE
ABLE, A Tool for Life Planning
by Carol Akers
PROGRAMS
A Place of One's Own: The 2019 STEM EQ Program
by Natalie Shaheen
Braille Enrichment for Literacy and Learning
by Carla McQuillan
Regarding the Colorado Center for the Blind and My Experience
by Luc Gandarias
REVIEW
My Father's Blood
by Amy Krout-Horn
Reviewed by Donna W. Hill
ODDS AND ENDS
Why Join the NOPBC?
Are you the parent of a blind or low-vision child? Don't know where to
turn?
Founded in 1983, the National Organization of Parents of Blind Children
(NOPBC) is a membership organization of parents, educators, and friends of
blind children reaching out to give each other vital support,
encouragement, and information. We have thousands of members in all fifty
states plus Washington, DC, and Puerto Rico.
The NOPBC offers hope, encouragement, information, and resources for
parents of blind or low-vision children. NOPBC provides emotional support
and a network of other families dealing with the same challenges you are
facing. We also provide information, training, and resources to empower you
to take an active role in guiding your child's development and education.
We can provide information on your child's rights and on the laws and
legislative issues that will enable you and your child to become strong and
effective advocates.
Have you ever wondered what your blind or low-vision child will be capable
of when he or she grows up? The answer to that question is that blindness
does not have to stop your child from doing anything he or she wants to do.
We can connect you with other families and blind adults who can serve as
positive mentors and role models. They can teach you the attitudes and
techniques that will enable your child to become independent and to succeed
in life.
What is different about the NOPBC?
Our status as a division of the National Federation of the Blind (NFB), the
largest and most influential
organization of blind people in the world, provides many benefits. Our
members are well informed about the societal, legislative, and
technological issues that affect blind people. We also enjoy the resources,
support, and expertise of fifty thousand blind people who can serve as
mentors and role models for us and our children. Finally, as our children
grow up, they have the Federation to belong to.
No other organization for parents of blind/low-vision children offers more
programs, activities, and training to families, children, and youth. One of
our most exciting activities is our annual conference. Every year since it
was established, the NOPBC has conducted an annual conference for parents
and teachers of blind children as part of the national convention of the
NFB. The program has grown to include five exciting days of workshops,
training sessions, activities for all family members, including sighted
siblings, and countless opportunities to meet blind adults and other
families and children from around the country.
What is the mission of the NOPBC?
The purpose of the NOPBC is to:
. create a climate of opportunity for blind children in home and
society.
. provide information and support to parents of blind children.
. facilitate the sharing of experience and concerns among parents of
blind children.
. develop and expand resources available to parents and their children.
. help parents of blind children gain understanding and perspective
through partnership and contact with blind adults.
. function as an integral part of the National Federation of the Blind
in its ongoing effort to achieve equality and opportunity for all
blind persons.
Most states have an NOPBC affiliate chapter. You can find your state
chapter at www.nopbc.org <http://www.nopbc.org> . If your state does not
have a chapter and you
would like to start one, please contact us. We may be able to offer
training and other assistance to start a state NOPBC chapter.
What are the programs, activities, publications, and resources of the
NOPBC?
National and State Parent Seminars and Conferences
Future Reflections Magazine
NOPBC Website
Books and Videos
Blindkid and Other Listservs
Early Childhood Conferences
Pop-Up IEP Website
Slate Pals Pen Pal Program
AAF Free Braille Books Program
Share Braille Book Exchange
Writing Contests
Junior Science Academy
Youth Slam High School Science Academy
National Center for Blind Youth in Science Website
NFB-NEWSLINE® Newspaper Service
Where the Blind Work Website
Free White Cane Program
Blindness 411 Facebook Group for Teens
NFB-LINK Mentoring Program
Scholarship Program
Straight Talk about Blindness Video Series
Parent Leadership Program (PLP)
Contact Us:
National Organization of Parents of Blind Children
President at nopbc.org <mailto:President at nopbc.org>
www.nopbc.org <http://www.nopbc.org>
FEATURE
Caption: Debra Bonde stands beside the early embossing machine constructed
by her father, Ray Stewart.
Happy Birthday, Dear Seedlings!
>From the Editor: For blind children and their families, Seedlings Braille
Books for Children is a beloved resource. For the past thirty-five years
this small nonprofit company in Livonia, Michigan, has provided books for
blind children and for blind parents to read aloud, whether their children
are blind or sighted. Seedlings books are sold at affordable prices, and in
many cases they are provided free of charge. In honor of Seedlings' thirty-
fifth anniversary, this seems a good time to look back at how the company
began and evolved over the past three-and-a-half decades.
"Everybody searches for a vocation they can be passionate about," reflects
Seedlings founder Debra Bonde. When she was in her mid-twenties, Bonde was
eager to find such a vocation, but she was hampered by her extreme shyness.
Social work and the other helping professions appealed to her in many ways,
but they were also scary. "They would require me to be out there talking to
people," she says. "That just wasn't going to work for me."
Then she saw an ad for a class on Braille transcription. She had a friend
who was a transcriber, and she thought the class might be interesting.
Twenty people signed up for the class, and Debra Bonde was among them.
Bonde quickly discovered that many people are not cut out to do Braille
transcription. "You have to be very detail oriented," she explains. "You
have to pay very close attention all the time." Of the twenty people who
took the class, Bonde was one of only two who finally were certified. She
earned her Braille certification in 1979 by transcribing The Best Christmas
Pageant Ever by Barbara Robinson.
Inspiration
While she was taking the class, Bonde met a woman whose daughter was blind.
She was aghast to find out that the little girl had only two Braille books
of her own. When she did some research she learned how few Braille books
were available for children and how outrageously expensive they were.
"I came from a family of readers, and I was very moved to learn about this
shortage of Braille books," Bonde remembers. "I firmly believed that kids
should be surrounded by books from an early age." She decided to transcribe
more children's books into Braille and to make them affordable.
Once she made that commitment, Debra Bonde got to work. Her father donated
some needed supplies as well as the first binding machine. He was an
engineer, and he managed to obtain the blueprint for a machine that added
electronics to an old Perkins Brailler. He built the machine and connected
it to an Apple IIe computer. With the help of this machine and a program
called BrailleEdit, one of the earliest Braille translation programs, Debra
Bonde transcribed and shipped her first titles in 1985.
Learning to use the Perkins-computer combo was no small achievement. Even
after Bonde had mastered the quirks of the machine, it kept breaking down.
It was only partially automatic, and she had to crank the paper in sheet by
sheet, printing the books one copy at a time.
By this time the organization had acquired a name. Bonde and her crew chose
Seedlings because Braille dots reminded Bonde of tiny seeds. Books from
Seedlings could help blind children grow up to be literate adults.
In 1986 Bonde printed the first Seedlings catalog on an old stencil machine
that belonged to her church. The catalog was only one page, and it listed
twelve titles. That year Seedlings distributed 221 Braille books to eager
young readers.
Growth and Expansion
Bonde knew that Seedlings had to reach a wider audience. She and her
assistant, who was one of her close friends, obtained a directory of
agencies serving the blind. They sent out as many fliers as they could
manage. A major boost came from a Detroit newspaper that ran a regular
column called Disabled in Detroit. The paper printed a story about
Seedlings, and it was picked up by the wire services. Stories about
Seedlings appeared in papers all over the country, and letters flooded in.
Most came from families hungry to obtain Braille books for their children.
Many arrived from people who offered their help.
It was clear that Seedlings needed to produce a broader range of Braille
titles, but money was tight. One of Bonde's friends was active in a local
Lions Club. She invited Bonde to speak to her chapter. Bonde still dreaded
public speaking, but she knew this was a valuable opportunity. For the sake
of Seedlings, she addressed the Lions Club. The Lions made a generous
donation of a thousand dollars.
Seedlings had been operating out of Debra Bonde's basement, but they were
quickly outgrowing the space. In 1990 Seedlings rented a room in a former
high school in Livonia, Michigan. The space had once been the school's home
economics room. It was a big, open area of about 1,000 square feet, with
plenty of room for shelving. Bonde and her assistants knew that families
were used to waiting months to receive Braille books, and they wanted that
to change. They determined to keep a good supply of books on hand. When
orders came in, they could be filled immediately.
In the early 1990s Seedlings had one part-time employee and several
volunteers. Everyone worked to keep overhead as low as possible without
sacrificing quality. "Everybody was very resourceful," Bonde says. "When
anything went wrong, we'd kind of MacGyver things back together."
In 1997 the city decided to tear down the old high school, and Seedlings
was forced to move to new headquarters. This time the company rented a
large commercial space in Livonia. Even with the luxury of 1,500 square
feet, they quickly ran out of room for books and equipment. Books were
piled everywhere.
In the years that followed, Seedlings expanded still further. Twice it
spread into neighboring spaces. The number of embossers grew, and so did
the staff and the corps of volunteers. Recently Seedlings acquired the
Braillo, the Cadillac of Braille printers. Manufactured in Norway and sold
in the United States through American Thermoform, the Braillo is a very
sturdy machine that produces interpoint Braille, or Braille transcribed on
both sides of the page.
Embracing UEB
When Unified English Braille (UEB) was adopted as the Braille code for the
English-speaking world in 2016, Seedlings focused on converting its
collection to UEB. The process of converting titles into UEB from the old
code is labor intensive, but the Seedlings staff felt it was crucial. "It
seemed so important to give young readers books in the code they are
learning at school," Bonde explains. They started with the books for
younger readers, the children who are new Braille learners. For older
readers they have begun by choosing the most popular titles.
Today the Seedlings catalog includes more than thirteen hundred titles,
ranging from board books for toddlers to full-length novels for teens.
Several books for young children are bilingual editions in English and
Spanish.
Often people ask how Seedlings decides which books to produce in Braille.
Selecting new titles is definitely a group effort. The staff and volunteers
look at titles that are popular and books that have won awards. They also
review suggestions from readers.
Although more and more titles are now available to blind readers
electronically through services such as Bookshare and BARD, Seedlings has
experienced no decrease in the demand for hardcopy books. In fact, the
number of orders increases every year. "We especially see the need with
early Braille readers," says Bonde. "As they work to master reading, they
need real books that they can hold in their hands."
Reaching the Blind Community
In 2017 Seedlings reached the half-million mark; it had sold or given away
five hundred thousand books since the days of the Brailler-computer!
Altogether Seedlings has sent books to children and adults in seventy-five
countries!
About half of the books that Seedlings distributes are donations to
schools, programs, and individuals. Teachers of the visually impaired
(TVIs) are eligible to receive four free Seedlings titles annually. For the
past seven years, Seedlings has donated books to the NFB BELL Academies.
This year Seedlings generously gave gift certificates to each of the
children who entered the Nationwide Braille Readers Are Leaders contest,
sponsored by the American Action Fund for Blind Children and Adults.
The Book Angel Program is a very special program that Seedlings has
sponsored since 2002. Children from birth to age twenty-one who sign up for
the program can receive three free Braille titles per year. Since it was
established, the Angel Book Program has given fifty thousand books to blind
readers.
When asked about future plans for Seedlings, Debra Bonde explains, "We'd
like to increase the number of books we distribute by about 10 percent per
year. And we want to continue giving away half of those books completely
free of charge."
Seedlings has touched the lives of thousands of people, and many of them
share their appreciation in heartfelt letters. "When I was first learning
Braille at age five, I received some Seedlings Braille books," wrote John,
a high school sophomore. "To this day I still have a few Seedlings books
sitting on my shelf, my favorites being The Very Hungry Caterpillar and
Goodnight Moon. Thank you, Seedlings, for helping children enjoy the
greatness of reading!" A lawyer from Ottawa, Canada, explained, "Were it
not for Seedlings, I would not have had books to read for pleasure as a
child. Starting from around age five, my favorite Christmas gift was a
stack of Seedlings books. I can remember the joy of perusing the Seedlings
catalog every year with my mom and picking the books I wanted. Reading
books myself permitted me to learn spelling, sentence structure, and the
joy of literacy." Rosa, a blind grandmother, wrote, "I have been able to
read to my son and granddaughter so many books from Seedlings as a blind
parent and grandparent. My son's favorite was Green Eggs and Ham. My
granddaughter's favorite is The Very Hungry Caterpillar. My granddaughter
loves when I read books to her, and when we're together, she hunts for her
favorite books and brings them to her Mima (that's what she calls me) and
snuggles next to me to listen to me read to her as she follows along
excitedly."
"We're very grateful for the support we receive from Braille readers,"
Debra Bonde says. "I love getting their feedback. I love what we do!
Everybody needs more books!" When she started creating Braille books for
children, Debra Bonde discovered her life's true vocation!
Happy thirty-fifth birthday to Seedlings!
TEACHING
The Braille Monster: A New Take on Flashcards for Blind Kids
by A PDRIB Post Contributor
Reprinted from www.pdrib.com <http://www.pdrib.com>
>From the Editor: The Professional Development and Rehabilitation Institute
on Blindness (PDRIB) at Louisiana Tech University offers exciting programs
that train O&M instructors and teachers of blind students. A trove of
excellent posts about teaching strategies can be found on the PDRIB
website. This article and the piece that follows are good examples.
A project for the Teaching Strategies class that I'm taking this quarter as
part of the teacher of blind students master's program is to come up with a
lesson plan to teach literacy skills. Not only do we develop the plan, but
we then teach a blind child in town using that lesson. I worked with an
outgoing preschool student who was ready to practice the Braille code in a
fun way.
I knew the student went to Braille Club, a group that meets at the
Louisiana Center for the Blind and offers additional practice for
interested Braille students of all ages. I asked her teacher what she was
working on there. The teacher told me that she was learning Dot 5 words and
that she enjoyed using flashcards. I wanted to do something more
interesting than just flashcards and drilling words. I like to do crafts,
so I came up with the "Braille Monster."
I typed up Braille flashcards of all the Dot 5 words and clipped the upper
right-hand corners so that my student could tell quickly whether she was
holding the card upright. I wrote a short, one-page story for her to read
in Braille with lots of Dot 5 words in it. I made up silly things in the
story such as, "My name [Dot 5 n] is Passion, and I have a mother [Dot 5
m]," so that she could practice reading them.
Now, about the monster. I took a cereal box and covered it with felt. The
monster has a colorful boa for hair, big googly eyes, and a cut-out mouth-
to eat all the Dot 5 words, of course!
I mixed the Dot 5 flashcards with other flashcards containing Braille
words. Every time she found a Dot 5 word, my student got to feed it to the
Braille Monster, and she loved that! She did a great job finding the Dot 5
words and stayed attentive, which was awesome because she tends to get off
track during lessons.
I will be making more Braille Monsters for the Louisiana NFB BELL Academy
this summer. The BELL Academy in Louisiana hosts a Braille Carnival with
lots of games to make learning Braille fun and engaging.
You can get creative when you think of lessons for your students. The
Braille Monster was easy to put together, and it could readily be adapted
for sighted children to use with print flashcards as well. You don't have
to over-think things or put a lot of money into projects; you can use
materials that are already around the house to make your own monster
lessons!
Victory Dance: Reversing the Roles of Teacher and Student for a Day
by Treva Olivero
Reprinted from www.pdrib.com <http://www.pdrib.com>
>From the Editor: Treva Olivero holds a Master's in Education from Louisiana
Tech University with a certification in teaching blind students (TBS).
A few months ago, I was teaching the Braille code to a kid, and every time
she got an answer right, she gave herself a round of applause. I've always
heard the expression "cheering yourself on," but this child really
practiced it! I don't remember the exact circumstances, but all of a sudden
she ran around the table twice and sat down. This was more than a round of
applause! I think it was her victory dance!
I was startled, but what she did next surprised me even more. This six-year-
old sat down and continued as though she'd been in her seat the whole time.
It hasn't happened ever again, but it sure brightened my day to see a kid
cheer herself on that way!
I had that experience while I was working as a paraprofessional for another
teacher of blind students in Louisiana. I think that we struck a balance
that I don't see happening in many classrooms. We were always the adults in
charge, of course, but we helped our students celebrate their achievements
in fun ways.
A few days after she ran around the table, the same student came in and
asked me, "Can I be the teacher?"
I knew she thought that she was teaching me, but of course the experience
was reinforcing the concepts we had been working on together. In other
words, she was learning the dot positions and Braille signs by teaching
them to me. Heck, she was even applauding me for doing a great job-unless,
of course, I (purposely) got the answer wrong!
"What's the sign for WH again?" I'd ask, and she'd answer, "Dots 1 5 6."
A few times I would ask her, "Can you please write it down for me? I don't
understand what you're saying." Away she'd go on the Perkins Braille writer
with a renewed sense of excitement!
I hadn't planned on this teachable moment coming up, but we still did the
instruction. We just reversed the roles for a full class period.
My tenure at the Institute on Blindness at Louisiana Tech taught me that we
teachers have to be flexible . . . to a point. When the student came in the
next day and asked to be the teacher again, I knew that we couldn't do that
every day. However, when you seize these moments you can help kids get
motivated to learn.
ORIENTATION AND MOBILITY
Dear Teachers, Please Presume Competence When You Work with My Child
by Crystal Kostick
Reprinted from Braille Monitor, Volume 62, Number 2, February 2019
>From the Editor: This article first appeared on October 28, 2018, on the
web community The Mighty. The Mighty is a digital health community created
to empower and connect people facing health challenges and disabilities.
The little girl in this article is not blind, but like many blind children,
she faces low expectations from her teachers. And just like Federation
parents, her mother doesn't plan to let those low expectations pass
unchallenged. She addresses the issue with humor, but she is serious about
making sure her daughter gets the education she deserves.
"Oh, she is just so sweet!"
"What a precious little angel you have!"
"Is she always this easy-going?"
Umm . . . nope. Nuh-uh. No way.
It's laughable, really. If you spend some time in our home and get to know
my lovely little girl, these statements are so far from our experience. And
yet, these are the type of comments I hear most often from teachers, aides,
principals, etc.
Well guess what? They are all being played.
Now before I continue, because the internet likes to mom-shame and some
people take things way too seriously, I feel like I need to interject here
the fact that I love my kid. She's probably the coolest one alive, and I am
basically obsessed with her sheer awesomeness.
However, that being said, she is no angel (but is any child, really?). This
girl is so many things: smart, sassy, goofy, mischievous . . . but sweet,
angelic, and precious are not the first things that come to mind. And I
honestly love that about her.
My daughter sustained a severe brain injury during her birth, and as a
result she has been diagnosed with hypoxic ischemic encephalopathy (HIE),
cerebral palsy, and epilepsy. She has significant delays and obviously
needs some extra support at school. But she is extremely bright, and her
levels of manipulation and impishness are right on track for her age.
She is only five years old, but she has already caught on to the idea that
she is cute.
Like, really cute. She is cute, and she has a disability, and people feel
sorry for her (insert eye-roll).
Please, make her work!
She is not at school to be cute for you. She is not there to learn new and
creative ways to get out of working. And she is definitely not there to
watch other people doing everything for her.
It's not okay. Yes, she is cute. Yes, she has a disability and will need
extra help in some areas. But as her mother I need to know that you are
seeing her potential and helping her to reach it. She is very capable of
many things, and I need to know that you know that.
Sending your child off to kindergarten is hard for any mom. But for a mom
with a child who has disabilities, it is downright terrifying.
This is my biggest fear: that she will be coddled and bombarded with help.
I want my daughter to have as close to a typical experience as possible,
and I want her to learn. School is not glorified daycare.
She can do hard things. Repeat after me: she can do hard things! It may not
look hard to some, but all the while, she is learning about resilience,
toughness, and persistence.
So please, be tough on my kid. Don't let her get away with not trying. She
doesn't have to be able to do everything correctly, but make sure to give
her the push and the time to make the effort.
Presume the utmost intelligence and competence, and give her a sturdy
platform to stand on-just like you would with any other child. I want her
to be educated and be the best possible version of herself. I may not know
just what that looks like, but I sure know what it doesn't look like.
Sincerely,
A "mean" mom who cares deeply and expects the same of the world.
Caption: Merry-Noel Chamberlain
The Preschool Blind Child Can Be a Cane User: An Article Review
by Merry-Noel Chamberlain
>From the Editor: Merry-Noel Chamberlain is a teacher of the visually
impaired (TVI) and orientation and mobility (O&M) instructor based in
Omaha, Nebraska. Recently she earned a doctorate in education from
Concordia University. Her articles have appeared frequently in Future
Reflections.
While I was conducting research for my doctoral dissertation, I came across
an interesting article, "The preschool blind child can be a cane user,"
written by R. L. Pogrund and S. J. Rosen in 1989. It was featured in the
Journal of Visual Impairment & Blindness at a time when fierce debate raged
among O&M instructors over the best time to introduce the cane to young
blind children. Because this article is packed with timeless practical
information, I compiled this review to pass its ideas along to today's
parents of blind preschoolers and young children.
First of all, Pogrund and Rosen state, "A growing body of anecdotal
evidence from the O&M field demonstrates that early cane instruction can
produce extremely positive results for the preschool blind child" (p. 438).
I find this statement to be just as strong in 2019 as it was thirty years
ago. Yet, even today, many blind preschoolers are routinely led around or
carried by adults. In fact, this article is bursting with indispensable
quotes, and I cannot state the authors' ideas any better!
Essential Quotes Found in the Article
. "The goal of O&M is to facilitate an individual's independence to the
greatest degree possible" (p. 435).
. "Early O&M intervention is essential" [for preschoolers] (Ferrell,
1979) "and there is much for the young blind child to learn to achieve
independent, safe, efficient, and graceful movement" (p. 431).
. "No thought or consideration had been given to the development or the
needs of young blind children when the original O&M sequence was
designed" during World War II and in the postwar years (p. 431).
. "The mobility tool the blind child will most likely use his or her
entire life is the cane" (p. 432).
. "The cane is an extension of the arm as it probes the environment" (p.
434).
. "If blind preschoolers travel only with sighted guides or by using
basic skills along rote routes of travel, they will have little
opportunity to explore the environment" (p. 434).
. "With the use of a cane as a tool to facilitate safer movement,
children will most likely be more interested in and more willing to
explore their surroundings" (p. 434).
. "The way young children learn about the world is through interacting
with it" (Hazen, 1982; Herman, Kolker, & Shaw, 1982) (p. 434).
. One "potential benefit of cane use for the severely visually-impaired
child is that it serves to show sighted peers and adults that the
child has a vision problem; thus, the child avoids such labels as
clumsy or awkward. The label visual impairment is one the individual
will live with for the rest of his or her life. The cane offers an
easy explanation to others" (p. 435).
Prerequisites and the Use of Push Toys as Pre-Canes
Many instructors believe that human guide skills are a prerequisite to
learning the proper use of the cane. However, Pogrund and Rosen argue that
this is not true. They state that high levels "of body, environmental, and
spatial concept awareness" are not prerequisites for learning to use the
long white cane (p. 436). Furthermore, long-term use of a push toy hinders
the transition to using the cane as a primary mobility tool. Push toys such
as miniature grocery carts and hula hoops sometimes have been used to teach
the bumper or probe concept, and they are great during playtime. However,
they cannot be with the child all the time. Pogrund and Rosen point out
that these toys protect "the child from more of the environment than is
necessary" and that push toys "do not provide the child with the tactual
and auditory feedback useful in identifying various textures and obstacles
in the environment" (p. 432).
Safety Rules of the Cane
Thirty years ago, Pogrund and Rosen stated that preschoolers need to keep
the cane tip on the ground at all times and in front of the body when
walking forward. I would like to add, however, that keeping the cane tip on
the ground at all times may be difficult for preschoolers. After all, they
are natural wanderers, and they will want to explore with whatever tools
they have on hand. Preschoolers often scribble with a crayon before they
learn to print letters. In the same way, blind preschoolers will play with
the cane to discover what it can do. They will over-swing the cane, lift it
up in the air, or even drag it behind them. This behavior is very natural
for children their age. We cannot expect three- and four-year-olds to hold
the cane correctly and keep it on the ground at all times, but we can
encourage them to do so . . . again and again . . . just as Pogrund and
Rosen suggested thirty years ago.
Historical Debates
Needless to say, there has been an ongoing debate between traditional and
non-traditional O&M instructors for many years. This article reveals that
the debate was alive thirty years ago, and it still lingers today. Pogrund
and Rosen leaned toward the new way of thought, as shown in the table
below.
|Old Way of Thought |New Way of Thought |
|Preschoolers need to learn |The term pre-cane is a misnomer, and many O&M|
|pre-cane skills before being|instructors feel the term needs to be changed|
|introduced to the cane. This|to 'basic skills' in which instruction can be|
|includes: sighted guide, |used with or without the cane. The term |
|information gathering, |pre-cane implies that the child must master |
|protective and alignment |such skills prior to cane introduction. This |
|techniques, etc. |means a child may be over the age of eight |
| |before receiving his first cane. |
|Preschoolers are not |"Much of the motor passivity seen in many |
|physically, cognitively, or |blind children is due to an inhibition of |
|socially ready before the |their normal tendencies to move rather than |
|age of eight to use a cane. |their lack of motivation to move" (p. 431). |
|Preschoolers do not have |"It does not take tremendous motor control to|
|motor control or |hold a cane....The cane is still acting as a |
|coordination to use the cane|bumper and a probe out in front of the child |
|so they are not physically |while not requiring a significant amount of |
|ready to use a cane. |motor control or muscle development" (p. |
| |432). |
|Preschoolers do not need to |Environments are dynamic. "No matter how well|
|use canes in familiar |orientated a child is or how accurately a |
|environments such as home, |child uses basic skills in other |
|yard, classrooms, |environments, he or she will inevitably trip |
|playgrounds, schools, etc. |over something or bump into something |
| |unexpectedly in the ever-changing world" (p. |
| |432). |
|Preschoolers will hurt other|"A child is not prohibited from playing with |
|students with their canes |a variety of toys, which, if used improperly,|
|because they are not mature |could be dangerous to others (e.g., metal |
|enough to handle dangerous |trucks, bats, stick toys)....Basic safety |
|items. |rules are essential, as are appropriate |
| |consequences if the rules are not |
| |followed...One cannot assume that a child |
| |cannot learn such rules if they are correctly|
| |taught and appropriately reinforced" (p.432).|
|Preschoolers will develop |"Do we refuse to give young children a crayon|
|inappropriate cane habits |or pencil for scribbling just because they do|
|which are difficult to |not hold it correctly and make appropriate |
|change later. |letter strokes? Do we refuse to give young |
| |children a spoon or fork just because they do|
| |not hold and use these eating utensils |
| |correctly?...Waiting to have any interaction |
| |with a writing tool, eating utensil...until a|
| |child has all the coordination, motor |
| |control, and/or strength to perform a skill |
| |perfectly is inappropriate and does not |
| |coincide with normal child development and |
| |normal patterns of learning" (p. 432-433) |
Early Cane Travel Effects
Have you ever wondered how a preschooler's posture is affected by not using
a cane? Poor postural patterns such as rounded shoulders, a backward lean
of the trunk, a forward head, and lordosis, as well as poor gait patterns
such as shuffling are difficult to correct when the child is older. Pogrund
and Rosen discuss the long- and short-term effects of cane use on gait (p.
433):
. Gait patterns are similar for both young sighted and blind children.
. Typical gait for young children includes small steps, no reciprocal
arm swing, out-toed position of the feet and legs (Macgowan, 1983;
Miller, 1967; Rosen, 1986).
. For a blind child, using a cane allows "gait patterns to mature the
same way and at the same rate as they do in sighted children."
. Without using a cane, the blind child may shuffle or stomp the floor
with their feet as a way to decrease impact when bumping into objects.
. "Motor problems and irregular gait patterns are learned behaviors,
developed out of a need to try to maintain orientation and balance
while moving."
Effect of Movement
Pogrund and Rosen go on to describe the problems associated with restricted
movement in young blind children and the positive effects facilitated by
the early use of the cane (p. 434):
. "After several unpleasant encounters with the environment, blind
preschoolers soon learn that it is safer to stay in one place unless
someone else moves with them, thereby offering a form of security."
. Moving through the environment without a cane does not reinforce
confidence in one's ability to travel.
. When the natural need for vestibular stimulation is not met, one will
turn to self-stimulation such as rocking or side-to-side head
movements.
. "All the research available on early movement suggests that the more
young blind children move, the better their muscle tone develops and
their vestibular systems are stimulated" (Ayres, 1979; Palazesi,
1986).
. The decreased fear of movement through cane use will motivate the
child to move more in the environment.
. If the preschooler is using the cane as protection when walking in the
environment, the child may not feel the compelling need to develop as
many inappropriate mannerisms because she or he will, in general, be
more active.
Effect on Environmental Exploration and Concept Development
If the preschooler only travels with the use of a sighted guide there will
be little opportunity for environmental exploration (p. 434):
. With the use of a cane as a tool to facilitate safer movement,
children will most likely be more interested in and more willing to
explore their surroundings.
. "The way young children learn about the world is through interacting
with it" (Hazen, 1982; Herman, Kolker, and Shaw, 1982).
. "The child must first feel safe before moving to higher cognitive
levels" (Maslow, 1954).
. "The passivity and lack of curiosity often exhibited by blind children
may well stem from their fear of movement and the resulting lack of
motivation to explore their environment" (Burlingham, 1965).
. "A limited interaction with the world results in less knowledge of the
environment. Such knowledge is a significant component in optimum
concept development" (Hill et al, 1984).
Effect on Attitude Toward Acceptance of the Cane by Family, Child, Peers,
and Professionals
For a number of reasons, it is generally easier to introduce the cane to
children, their families, and their schools at a young age (p. 434):
. Preschools are generally open and positive to having a child use a
cane. As soon as staff members realize that the cane works as a bumper
and probe to protect and warn the child, they recognize its benefits.
. In general, preschoolers are not concerned about their peers'
attitudes about the cane. Preschool classmates are usually more
accepting than peers at the middle- and high-school levels.
. After preschool, it is common to find resistance from the blind child
and family members when introduction of the cane is suggested. The
child and family have become accustomed to not using a cane, despite
the safety concerns and the lack of efficiency and grace that result.
. Some parents, children, and members of society regard the cane as a
negative symbol of blindness. "Blindness cannot be denied once a cane
is used" (Wier, 1988).
. When the preschooler uses a cane, parents observe the child's freedom
of movement and the safety the cane brings to their child. Thus, they
gain a more positive attitude toward the cane.
. The cane becomes an integral and natural part of the preschooler's
functioning within the preschool environment and the home.
. Because safety is improved, administrators, regular education
teachers, and other professional staff may be more accepting of having
a blind child in their school.
Effect on Self-confidence and Autonomy
Learned helplessness occurs when much of the preschooler's life is
controlled by others, leading to passivity and lack of purposeful movement
(p. 435):
. "With the use of a cane, the young blind child has one area in which
he or she does not have to be so dependent on others and thus can feel
some degree of autonomy in and control of the world. It is through
this feeling of control that competence, which leads to better self-
esteem and self-confidence, develops" (Stotland & Canon, 1972; Hill &
Ponder, 1977; Hill et al, 1984).
. The more preschoolers are able to act effectively within the
environment, the higher their level of self-esteem. The feeling of
independence needs to develop during preschool to ensure that self-
esteem will develop. The preschooler "who does not always have to go
with a sighted guide and who can extend her or his travel beyond rote
routes using basic skills is more autonomous and feels more self-
confident." When the child moves about freely in the environment with
the use of a cane, others will view him or her as being more competent
and less dependent and will begin treating her or him with more
respect.
. Early cane use may be one very important factor in disrupting the
cycle of learned helplessness.
Effect on Mobility of Low Vision Children
Like children with little or no vision, children with some usable vision
can also benefit from early use of the cane (p. 435):
. If the child moves with hesitancy and moves unsafely, inefficiently,
or ungracefully, using a cane may allow the use of residual vision for
such purposes as scanning the environment or locating visual
landmarks, rather than cautiously monitoring the ground immediately in
front of his or her feet.
. The cane provides needed security to promote freedom of movement
within the environment.
A Few Ideas for Introduction of the Cane
This article of thirty years ago is just as powerful today as it was back
then. It is my hope that we all revisit this article and move forward,
rather than having parents and professionals look back thirty years from
today and conclude that nothing ever changed. We need to start early with
our preschoolers in order to give them a fighting chance to become
independent travelers. Here are some final thoughts:
. Although preschoolers need the primary motor abilities to grasp the
cane and to walk independently, the natural first step is to permit
the child to explore freely with the cane.
. The cane can be used as a bumper for protection, teaching cause and
effect in the process. Shape the skill, and then provide time for the
child to perfect it. "Shaping is a process of refining skills slowly
over time, with reinforcement, for closer and closer approximations to
the desired skills" (p. 435).
. There is no need to work on everything at once. Present skills at a
pace compatible to the preschooler's attention span and learning
ability.
. Preschoolers do not have to have expressive or receptive language to
use a cane. "The use of techniques such as modeling, nonverbal
communication, physical prompting, and receptive touching are
effective in teaching children without these language abilities" (p.
435).
. As soon as possible, integrate the cane into all daily activities
(both at home and at school).
. Help the preschooler to walk with the cane - even if you have to bend
over to do so. Attend a NFB Cane Walk.
. Have fun and be positive; children quickly pick up and mirror your
attitude toward the cane.
References
Ayres, A. J. (1979). Sensory integration and the child. Los Angeles:
Western Psychological Services.
Burlingham, D. (1965). "Some problems of ego development in blind
children." Psychoanalytic Study of the Child, 20, 194-208.
Ferrell, K. (1979) "Orientation and mobility for preschool children: What
we have and what we need." Journal of Visual Impairment & Blindness, 73(4),
147-150.
Hazen, N.L. (1982). "Spatial exploration and spatial knowledge: Individual
and developmental differences in very young children." Child Development,
53(3), 826-833.
Herman,J.F., Kolker, R.G., & Shaw, M.L. (1982). "Effects of motor activity
on childrens intentional and incidental memory for spatial locations."
Child Development, 53(1), 239-244.
Hill, E., Rosen, S., Correa, V., & Langley, M (1984). "Preschool
orientation and mobility, An expanded definition." Education of the
Visually Handicapped, 16(2), 58-72.
Macgowan, H. (1983). "The kinematic analysis of the walking gait of
congenitally blind and sighted children: Ages 6-10 years." (Doctoral
dissertation, University of Minnesota 1983). Dissertation Abstracts
International, 44, 703A.
Miller, J. (1967). "Vision, a component of locomotion." Physiotherapy, 53,
326-332.
Palazesi, M.A. (1986). "The need for motor development programs for
visually Impaired preschoolers." Journal of Visual Impairment & Blindness,
80(2), 573-576.
Pogrund, R.L., Rosen, S.J. (1989). "The Preschool Blind Child Can Be a Cane
User." Journal of Visual Impairment & Blindness, 431-39.
Rosen, S. (1986). "Assessment of selected spatial gait patterns of
congenitally blind children." Unpublished doctoral dissertation, Vanderbilt
University, Nashville, TN.
Stotland, E. & Canon, L. (1972). Social psychology: A cognitive approach.
Philadelphia: W.B. Saunders Co.
Wier, S. (1988). "Cane travel and a question of when." Journal of Visual
Impairment & Blindness, 82, 197.
Caption: Elaine McHugh
Rocking Revisited
by Elaine McHugh
>From the Editor: People sometimes ask me where I find the articles that
appear in Future Reflections. Some come from presentations at NFB
conventions and seminars, and some are reprinted from other Federation
publications. Many articles are submitted by blind adults, professionals in
the blindness field, and parents of blind children. Others grow out of
conversations I've had with people who have compelling stories to share.
This article by Elaine McHugh came from a most unexpected source-my
fiftieth college reunion!
When Elaine and I were classmates at Oberlin College, she was headed for a
career in the field of modern dance. As often happens, however, her life
took some surprising turns. Her work in dance and choreography led her to
teach adapted physical activity to children and adults with disabilities.
She also became an orientation and mobility instructor. This article draws
upon her doctoral research, in which she investigated rocking behavior in
blind children.
I can't remember how I decided to conduct my doctoral research on rocking,
but as it turned out, the topic perfectly suited my interests and
expertise. Rocking is an area of concern for many parents and teachers, and
I am pleased to have this opportunity to review my findings and to look at
more recent research.
As a parent or teacher of blind children, you have probably heard many
negative comments about rocking. The following statements are typical.
. Rocking is inappropriate behavior, and it has to be stopped.
. Rocking prevents a blind person from fitting in, finding a job, and
making friends.
. Rocking reflects poorly on all blind people.
. Many blind people have not been educated about the drawbacks of
rocking.
. Rocking is a bad habit that persists in adults because it was never
addressed in childhood.
. If blind people understood how sighted people react to rocking, they
would stop.
However, other perspectives may seem less harsh and judgmental.
. Some sighted people also have stereotypies (repetitive mannerisms or
behaviors), that include rocking, twirling the hair, or swinging a
leg.
. Rocking provides vestibular stimulation and is self-soothing.
. Rocking is a normal part of development for everyone.
. Rocking reflects a need to move when freedom of movement has been
limited or curtailed.
Previous Research
Before I conducted my doctoral study, my review of the scholarly literature
made it clear that rocking is part of normal development. Some research-
including the two studies that I conducted-gives us clues about possible
causes and control of this behavior.
Formal research has established the following points:
1. Rocking appears in typically developing sighted children during
transitions between motor milestones, such as the time just prior to
creeping on all fours.
2. Rocking is delayed in onset and/or persists beyond the expected period
in some children with disabilities.
3. The tendency to rock may be related to factors such as activity level or
restriction of activity, cognitive delays, institutionalization, and/or
environmental deprivation.
4. Sometimes interventions to control rocking behavior are successful, and
sometimes they are not.
The First Study
My dissertation was based on a qualitative study. I studied four blind
children ranging in age from ten to thirteen who rocked persistently. All
were congenitally totally blind due to retinopathy of prematurity (ROP).
All of them had average or above-average intelligence, and they were all
mainstreamed in school. I observed the children at school, at home, and in
various other settings. I also interviewed their parents, teachers, and
therapists, as well as a few school staff members, peers, and siblings. I
did motor tests to determine the children's fitness, motor skills, balance,
and coordination, and I looked at their school records and other reports.
I found that the participants had a number of factors in common, suggesting
that the combination of prematurity and ROP may present some unique
developmental and neurological challenges. Due to their medical fragility
in the first months of life, all of the children had experienced surgeries
and long periods of immobility. Lengthy hospital stays deprived them of the
cuddling and playful handling that is part of life for most infants.
Even after the children came home from the hospital, their movement
experiences were limited. Over the years they had few opportunities for
free and vigorous movement, leading to poor fitness and other motor delays.
These delays, in turn, most likely affected the number, range, and quality
of the children's later movement experiences. Due to their low skill
levels, perceptual-motor delays, and poor fitness, the children had little
incentive to move about. In other words, they were caught in a vicious
cycle!
The children in the study rocked throughout their waking hours. They rocked
while they were waiting or listening. They rocked when they were
conversing, eating, reading silently and reading aloud, engaging in class
discussions, typing, using a calculator or abacus, putting on their shoes,
telling a story, or reciting poetry. Their rocking occurred in classrooms,
gyms, cafeterias, hallways, and cars. The children rocked at home, during
mobility lessons, on the playground, on field trips, at church, and in
child care.
Parents, teachers, and others made concerted efforts to control the
children's rocking, but the behavior proved extremely resistant. The
children experienced some of these attempts as very frustrating, and so did
the parents and professionals.
For the two older children in the study, rocking was less frequent and less
intense than it was for the younger children. This finding suggests that
age or maturity may be factors in the reduction of rocking. It's not known
what it is about getting older that seems to make a difference, but social
awareness and self-management may increase with age. In addition,
cumulative efforts by others to reduce the behavior eventually may have an
impact.
Interestingly, the study participant who showed the most control over her
rocking also had the greatest opportunities for vigorous physical activity.
She jumped on a trampoline in the backyard, swam in the family pool, and
rollerbladed with her three siblings in the family's large driveway. This
observation supports the idea that vigorous physical activity can help
reduce rocking.
Parents and teachers reported that all of the children seemed to crave
movement. A PE teacher said that one child "almost wanted to explode with
energy." Another teacher said, "She just wants to be active; unless she's
moving, the game hasn't started."
All of the children had had early intervention services that involved
physical activity. Nevertheless, at the time of the study their
opportunities for vigorous movement were very limited. Although the
children all attended physical education classes at the time of the study,
these classes did not provide vigorous movement on a daily basis.
The Physical Activity Guidelines for Americans, issued by the U.S.
Department of Health and Human Services, recommend that children and
adolescents ages six to seventeen should have sixty minutes or more of
moderate to vigorous physical activity on a daily basis. Throughout my
years of professional experience training and observing physical educators,
I have found that this recommendation is rarely met, even in some high-
quality PE school programs.
Although sighted children probably don't move enough during the course of
the school day, I suspect that they find more opportunities for movement
than their blind classmates do. When I reviewed a videotape of one blind
student in his classroom, I made a startling observation. Throughout the
period captured by the video, the blind child's peers were up and down
frequently. They moved around the classroom to get materials, sharpen
pencils, or talk to the teacher. Meanwhile, the child I was observing
remained in his seat, rocking gently. This observation suggested that the
blind children did not experience even the low levels of incidental
movement that are common for sighted children in the classroom. They may
have grown accustomed to teachers or aides bringing them the materials they
needed and coming to them to answer questions about class assignments.
The Second Study
In a second study, a colleague and I conducted research at a sports camp
for children with visual impairments. We gathered information on fifty-two
children through questionnaires, observations, and parent interviews.
Fifteen of the children were reported as rocking persistently, either
currently or in the past. This study allowed us to compare the children on
a variety of factors. We looked at the developmental histories of those who
rocked and those who did not. We compared those who had ROP with those
whose visual impairments had other causes, and we compared children who had
a range of degrees of vision loss.
Our research corroborated the findings of previous studies. It showed that
rocking seems to occur in association with a pattern of developmental
factors, although the pattern can vary from child to child. As we found in
my previous study, extended hospital stays and early medical complications
often resulted in severe restrictions of movement and parental handling.
"He was pinned down so much," one parent reported, "especially because of
these eye surgeries." Many of the children were connected from birth to
machines, tubes, and wires that prevented free movement for weeks or months
at a time.
The parents generally reported that rocking began early and proved
resistant to efforts to control it, although for a few children it declined
over time. Teachers were often the first to identify rocking as
inappropriate and to insist on controlling the behavior. Some evidence
suggested that involvement of the children or teens themselves was
important in modifying rocking.
Eight of the fifteen children who rocked were congenitally totally blind,
and the other seven had congenital low vision. Nine of the fifteen had ROP.
The histories of the children whose impairments had other causes revealed
some of the same factors seen in the children with ROP. These factors
included congenital vision loss, extended time in the hospital after birth,
and multiple medical complications early in life. The children who did not
rock shared a number of factors, including normal birth weight, little or
no time in the hospital after birth, the absence of surgeries during
infancy, and visual impairment that occurred after eleven months of age.
Interestingly, two pairs of siblings attended the camp. The differences in
their histories helped to explain why one sibling from each pair rocked and
the other did not. Differences in birth weight, time spent in the hospital
after birth, and early medical problems seemed to be important factors.
Finally, we found a few children who did not fit the outcome we would have
predicted from their histories. These children showed that the presence or
absence of rocking may be influenced by some factors that we didn't
discover.
Like the children in my first study, the children who rocked seemed to have
an insatiable need for movement. "It is very difficult to get him just to
stand still next to you," one teacher told me. "He always has to be in
motion." Another reported, "I can just see that he is going to burst while
he is sitting there . . . trying to contain himself."
Research done by others in recent years supports the findings above and
adds some important information. Some investigators substantiated that
extent of vision loss and sensory processing deficits play a role in
determining the number and type of stereotypies a child demonstrates.
Several researchers conclude that stereotypic movements such as rocking
help the child maintain an optimal level of stimulation. They believe that
the challenge for parents and professionals is to identify the function for
a particular child in order to facilitate socially appropriate behaviors
that achieve the same result.
Some writers in NFB publications have expressed strong beliefs that rocking
should be controlled in order to promote social acceptance. Others held
ideas that coincide with my findings and those of other investigators. For
example, some point out that rocking communicates sensory needs that have
to be met. One parent described redirecting her young child to engage in
singing and movement activities whenever rocking appeared. Another writer
recommended teaching children who rock about behaviors that other children
do when they have to sit still. She also urged providing adequate physical
activity, with adaptations that allow the blind child to play successfully
and appropriately with peers.
Research shows that rocking relates to complex interactions between medical
history, visual status, and environmental factors. An increased need for
specific sensory input seems to result in the persistence of movements such
as rocking that provide vestibular and kinesthetic stimulation. As a child
grows, available resources and interventions need to provide sufficient
movement opportunities. Such opportunities may preclude or reduce
persistent rocking.
Findings from the literature on behavioral change support the idea that
individuals themselves must take charge of controlling unwanted behaviors
to effect meaningful change. One adult who rocked when she was young
reported that she took control after a teacher whom she greatly admired
expressed disappointment with her for rocking during a public presentation.
She also reported that she had several rocking-chairs in her house. She had
found a way to rock that was considered socially acceptable.
Decisions about how to address a child's rocking should be based on
research findings, and as much as possible should avoid punitive or
judgmental responses. As children grow older, they should be involved
directly in any decision about how to address the behavior. Without the
child's involvement, interventions are unlikely to succeed.
As I reviewed the NFB literature, I discovered a quote from Joe Cutter that
perfectly captures my underlying philosophy. He wrote, "For blind children,
as for all children, the freedom to move, to be self-amused, and to
experience the joy of movement is fundamental to being human."
References
Cutter, J. (2007). As quoted in "Teaching Orientation and Mobility to
Students with Visual Impairments and Additional Disabilities," by M. N.
Chamberlain and D. Mackenstadt. Future Reflections, 2008.
Fazzi, E., Lanners, J., Danova, S., Ferrarri-Ginevra, O., Gheza, C.,
Luparia, A., Balottin, U., and Lanzi, G. (1999). "Stereotyped Behaviors in
Blind Children." Brain Development, 21 (8), 522-528.
Gal, E. and Dyck, M. J. (2009). "Stereotyped Movements among Children Who
Are Visually Impaired." Journal of Visual Impairment & Blindness, 103 (11),
82-95.
Gal, E., Dyck, M. J., and Passamore, A. (2010). "Relationships between
Stereotyped Movements and Sensory Processing Disorders in Children with and
without Developmental or Sensory Disorders." American Journal of
Occupational Therapy, 64 (3) 453-461.
Gosch, A., Brambring, M., Gennat, H., and Rohlmann, A. (1997).
"Longitudinal Study of Neuropsychological Outcome in Blind Extremely-low-
birthweight Children." Developmental Medicine and Child Neurology, 39 (5),
297-304.
Hashash, S. (2011). "Student Viewpoints." Future Reflections, 30 (4)
McHugh, B. E. and Pyfer, J. (1999). "The Development of Rocking among
Children Who Are Blind." Journal of Visual Impairment & Blindness, 93 (2),
82-95.
McHugh, Barbara Elaine. Texas Woman's University, ProQuest Dissertations
Publishing, 1995. 9615490.
McHugh, E. and Lieberman, L. J. (2003). "The Impact of Developmental
Factors on Stereotypic Rocking among Children with Visual Impairments."
Journal of Visual Impairment & Blindness, 97 (8), 453-474.
Miss Whozit. (2016). "Ask Miss Whozit." Braille Monitor, 59 (7).
Prost, D. (1997). "Parents: The True Teachers." Future Reflections, 16 (3).
Ross, D. B. and Koenig, A. J. (1991). "A Cognitive Approach to Reducing
Stereotypic Head Rocking." Journal of Visual Impairment & Blindness, 85
(1), 17-19.
Stevens, J. (2011). "Vestibular Stimulation." Future Reflections, 30 (1).
Reprinted with permission from Wonderbaby Newsletter, April 2010,
www.wonderbaby.org.
Willoughby, D. M. (1994). "Fitting In Socially." Future Reflections, 13
(3). Reprinted from A Handbook for Itinerant and Resource Teachers of Blind
and Visually Impaired Students, by D. Willoughby and S. Duffy. Baltimore:
National Federation of the Blind, 1989.
Caption: Sheri Wells-Jensen makes her way through a heavy rainstorm.
How Do You Get Around? There's No One Strategy to Get There
by Sheri Wells-Jensen
Reprinted from Braille Monitor, Volume 62, Number 6, June 2019
>From the Editor: "How will my child get around when there's no O&M
instructor anymore?" Parents sometimes ponder this question as their
children set off for unfamiliar places, from a concert in the park to a
picnic in a friend's backyard, from a local shopping mall to the student
union on a college campus. In this article, Sheri Wells-Jensen brings her
humor and life experience to the question, "How do you get around?" Sheri
Wells-Jensen teaches and conducts research as an associate professor of
linguistics at Bowling Green State University.
Like just about everybody who doesn't drive but needs to get places, I have
a lot of interactions with cab drivers. I mean . . . a lot! Mostly these
interactions involve the basics: exchange of greetings, exchange of
information, exchange of cash, and mission accomplished. But there are
always those extra exchanges that stick with a person.
"How do you get around?" one particular driver wanted to know, asking just
as I was opening the door to exit the cab.
After sitting in companionable silence all the way across town, I was
startled by the question. With the door open and one foot on the curb, I
didn't have time to say much. Even by that minimal standard, though, my
answer felt inadequate.
"I just . . . go around," I said vaguely, distracted. "Like anybody. I take
cabs, like this one . . . or I sometimes walk . . . you know."
This piece of brilliant elocution accomplished, I finished extricating
myself from his cab, closed the door on his answer, and headed on my
inarticulate way across the parking lot and up to my office.
I don't consider it my job to educate every abled person about blindness or
any other disability, but when people aren't overtly rude, I try to be
reasonably congenial and moderately informative most of the time. The poor
fellow probably deserved a little more of my attention, but as I was
juggling phone and keys and cane and computer bag in the elevator, I
realized that his question was hard to respond to. He'd wanted a simple
answer: the one magic thing that disabled people do to solve the problem.
The one "right" way we all pour water, or match our clothes, or pick cat
hair off a jacket-the silver bullet that "makes it all possible." What
could I have told him that would have been true and would have fit into the
approximately five seconds I'd been given?
As an experiment, I put the question to the next student who stopped by my
office. "How do you get around?" I asked her, pretending this was a normal
question one human being might ask another.
I was secretly pleased when her answer was about as inarticulate as mine
had been. "What do you mean?" she wanted to know. "Like . . . on campus? I
just . . . walk mostly, or I take the shuttle sometimes."
"But what if you don't really know where you're going?" I pressed. "What if
you had to go to . . ." I searched for a moderately obscure building I'd
had to find. "Eppler South?"
She hesitated. "That's by the Union, isn't it? I'd just like, go over there
and look around until I found it, I guess."
Fair enough. Neither of us was being very clear. She "goes over there" and
"looks around." And she doesn't think about it.
Despite my inarticulate interaction that morning, I do think about it. And
while as a sighted person she has just one primary, half-conscious way of
finding a building she needs, I have a basket full of interconnected
strategies ready to employ whenever I want to go somewhere-especially
somewhere new to me.
Let's take that example of Eppler South-a building that is, I agree,
somewhere over by the Student Union. It is vaguely northwest from my
office. I confess that I still don't know exactly where it is, but the
English department faculty, for some reason, had decided to hold a mid-
morning meeting over there just a few weeks back.
If I were sighted, I suppose I, too, would wander in that direction and
look around until I saw the sign. Then I would go in and check room numbers
and find the meeting, and that'd be that. You could call that Plan A if you
like.
Plan A doesn't work in the same way for me. So that morning, knowing I had
to find this new building, I started with Plan B. It went something like
this. About two hours ahead of time I text a pal of mine who is probably
going to the same meeting: "hey kimberly u going 2 the department mtg?"
I don't ask her to go out of her way. If she's going, I'll meet up with her
somewhere. There's time. She's going to use Plan A, and I could follow
along.
She replies in under a minute: "mtg? nooooo! going 2 b late!"
We text back and forth for a bit, griping about faculty meetings, and I say
finally, "c u there".
Plan C: I try another contact. "Hey [NAME-REDACTED] r u going 2 the mtg?"
[NAME-REDACTED] takes over ten minutes to answer, during which I become a
little more alert to the passage of time.
My phone buzzes. "r u kidding? no way!" He adds a few pertinent emoji,
including my favorite, the "smiling pile of poo."
I sympathize. But I do have to go.
An hour and a half later, I take my usual cab to campus, which drops me off
near my own office. Things are getting tighter.
Plan D: I stop on the curb and text another pal: "hey chad? r u walking
over 2 the mtg?"
Chad replies almost instantly: "already here! 26 minutes early! where r
u????"
I choose a sarcastic emoji or two in response and proceed with plan E. I
walk over to my building, reasoning that other colleagues will be coming
out of there, and I could follow somebody over.
No luck. Either they've already left, or like Kimberly they are planning to
be late . . . or maybe they're on the [NAME-REDACTED] plan-lucky dogs.
The time comes when I can't wait any longer or I won't have time for plan
F, which I start inventing fast!
So . . . Plan F: I turn around and head northwest. It's worth mentioning at
this point that it's raining . . . that dreary, uncompromising, insistent
kind of Midwest rain that likes to last all day just to make you miserable.
I get what I figure is about halfway there and pull out my phone again.
I have several GPS apps, some of which work well on campus and some of
which don't. My favorite is Over There by Dmitrijs Prohorenkovs, which grew
out of Smith-Kettlewell's virtual talking signs project. You hold the phone
flat like a remote control and point it around, and it identifies
landmarks. Trying to keep the rainwater off the screen as best I can, I
scan for the building. But it isn't there. I mean, it literally isn't
there. It's as if the rain had washed it completely off the map. Fail.
Plan G. It's time to stop a passerby and get information the old-fashioned
way. But the rain has apparently washed all the people off the map, too,
and I hear nobody near me.
Plan H: Are we really on Plan H already? I have just under ten minutes now.
Returning to Over There, I find an entry on the map for "BGSU Something-
Something Gymnastics" (I can't hear well through the increasingly heavy
rain). I remember that the building I'm looking for was a gym once, or
still is maybe? If anything near me had something to do with gymnastics,
Eppler South might be it. And it's kind of in the right direction.
I readjust course, choose a sidewalk that seems to trend that way, and step
up the pace, sploshing through some pretty impressive puddles I don't have
time to avoid. The wind is picking up, and I don't think I'm that close.
Plans I through L form in my mind. I could just keep going, which will
probably eventually work if I'm right about the gymnastics thing. I could
go inside whatever classroom building is nearest (I hear one looming off to
my left) and find somebody to ask, or I could re-text one of my pals and
ask them to come out to meet me, or I could turn around-which is sounding
pretty nice right about now-and take my soggy self-back to my office. Maybe
[NAME-REDACTED] is there, and we could commiserate.
Plan M presents itself in the form of a colleague of mine walking up behind
me with an umbrella and asking if I'm going to the meeting . . . and if I'd
like to go with him because I'm looking a little drowned. And off we go.
Now, if the meeting had been a particularly important one, I would have
arranged things more securely ahead of time. Working through my
possibilities, I would have come up with three or four totally different
plans, each of which could have served as a backup for the others. I could
have learned the route ahead of time, or made arrangements to help set up
the meeting and accompany someone there, found out if a cab could go
directly to Eppler South instead of to my usual drop-off place, or asked
around until I found someone else who was definitely going and met up ahead
of time, maybe for coffee-making it a win/win situation, especially
considering the rain. I would not have been relying on chance or the casual
good will of strangers.
That's just the thing . . . my ability to "get around" is much more a set
of contingencies than a single, easily articulated method. It grew out of
years of cane practice and persistent trial-and-error. It grew from
countless times when I got lost, re-found my way, got lost again, and
realized that getting lost is neither permanent nor disgraceful. Most of
all, it grew out of the realization that there is no one right way to do
anything-that all success is a patchwork of tactics we employ when they are
needed.
We start out, reappraise, continue, evaluate, adjust, invent alternatives,
actively strategize, and make endless micro-decisions as information flows
in. We are improvisational artists, juggling options like plates spinning
high above our heads, deftly selecting this strategy or that as we proceed.
I wouldn't say that it's difficult, but it can be intricate. In any case,
it's definitely too much to describe in five seconds with one foot on the
curb and the other still inside a taxi, no matter how articulate you
believe yourself to be.
BRAILLE
For the Love of Reading
by Angela Shambarger
>From the Editor: Angela Shambarger holds a master's degree in education in
student development, and she has worked at the University of New England in
Maine for over twenty years. Currently she serves as the university's Title
IX coordinator and teaches as an adjunct professor. She reports that she
and her husband have two quirky sons and two goofy Newfoundlands.
It's the end of the 2018-2019 school year, and I am finally sorting through
all those school papers that have been awaiting my attention since the
spring of 2018. (Please don't judge my housekeeping skills!) In the pile of
papers I find a letter I have set aside, written by my son Benjamin in his
bold, blocky handwriting on his special dark-lined paper. It is a letter he
wrote to himself as part of an assignment at the beginning of his sixth-
grade year. The assignment was meant to help the teacher learn about each
of her students. The students were encouraged to keep the letters and
reread them at the end of middle school in order to reflect on how much
they have grown and changed.
In the letter Benjamin's twelve-year-old self writes to his future eighth-
grade self, listing all the things he likes to do. At the top of the list
he writes in his struggling script that he loves to read.
It's true. Benjamin does love to read. He loves to write, too; he has an
oddly dark imagination that enjoys weaving fantastical stories. In fact, he
entered a short story contest for middle schoolers and won a prize.
What is important about this sheet of black and white is that it is a
snapshot of my son and his life, before. Visually impaired from birth due
to a rare retinal disorder, he had always struggled with the mechanics of
learning. Was the font large enough? Was the contrast dark enough? Did he
have the correct paper and pens so that he could see what he was writing?
How large could we blow up this worksheet and still make it legible?
During his seventh-grade year Benjamin's eye condition progressed
dramatically. At the start of eighth grade we received a functional vision
assessment from his teacher of the visually impaired (TVI) that recommended
Benjamin become a Braille learner.
As I write, my eyes well up and my heart aches, recalling the emotions I
experienced when I read those words. I got the report by email while I was
at work, and I reread it several times before I felt prepared to read it to
my husband over the phone. But after the initial shock came an unexpected
sense of relief. The weight of our two-year struggle to force Benjamin to
learn in a sighted environment was lifted at last. Suddenly and clearly, I
understood that what had once seemed to be a sentence to lifelong
disability was actually an invitation to independence. Braille would make
the written word accessible to my son. He would not have to rely on someone
else to read to him or transcribe for him. Braille would open a door to
access.
We were anxious about how to sell this plan to my son, with his teenage
self-consciousness about being different. We decided to introduce the idea
of learning Braille as a way to make school and life better. Braille was a
new skill that would mean he wouldn't need to struggle so hard to access
the material.
"What do you think about this? Do you think you would like to try to learn
Braille?" I asked him.
Much to our surprise, he cocked his head to the side and said, "Yeah, that
might be good."
Once we made up our minds, we were fully committed. Benjamin began Braille
instruction after the holidays. We ordered books in Braille at different
reading levels for our home library. Benjamin's TVI sent home daily reports
about how fast he was learning. He even stopped playing violin out of worry
that the callouses on his fingertips would make it harder for him to read.
At the same time he became a Braille learner, Benjamin developed vestibular
neuritis, an inflammation of the vestibular nerve that causes vertigo,
migraines, chronic fatigue, and inability to concentrate or tolerate
confusing environments. The illness has hampered his progress in Braille,
but he has persevered.
At times we feel as though we are in a race against the curriculum. Now
that Ben is in high school, each semester and even each quarter brings new
content that requires a new set of skills. Learning these new skills feels
a bit like learning a series of new languages. Geometry-math in perhaps its
most visual form-was stalled for months while we tracked down the tactile
graphics Ben needed. Then he had to learn how to interpret those tactile
graphics. We learned to build 3D models out of cardboard and to use 3D
printing to create shapes and planes and their intersections so he could
understand what each theorem was trying to show him.
It took us a few months to determine which Braille math system Ben would
learn, UEB or Nemeth. Finally, in May, we determined that Nemeth was the
way to go, since the PSATs and SATs use Nemeth math. Now Ben needs to
master Nemeth before he takes his PSATs this year. Fortunately, he earns
foreign language credit for his Braille studies. For now we don't have to
worry about teaching him the Braille symbols for accented vowels that he
would need in order to learn French.
Toward the end of his spring semester, Ben received and began learning to
use a device called the BrailleNote Touch. We are continually amazed by
this marriage of technology and Braille. Here is a tablet device that will
allow Ben to read and write Braille electronically. It will convert almost
any electronic document or email into Braille. Now we are racing to master
this technology so Ben will be able to keep up with the rigors of his
classes and won't start the new school year already behind.
Ben is somewhat distrustful of technology, and he has trepidations about
learning to use new electronic tools. He is a bit of a perfectionist, and
he likes to do things perfectly right away. However, he has begun to
embrace the learning process, recognizing it as a means to success and
independence.
If you talk to the team of teachers and rehab specialists working with my
son, they will tell you that he has goals. Perhaps they will also say that
he is a bit stubborn. Ask Ben about his goals, and he will quickly tell you
that he is going to get his doctorate in history and move to England. He
hopes to work in medieval restoration or museum curation. Like other teens,
he hates the idea of being different or needing help to do the things he
has to do. Yet, his desire to do well in school and be independent
outweighs this discomfort. For Ben and for our family, Braille has become
the path to success.
As I worked on this article, I asked my son for his thoughts on learning
Braille. He tells me that he is not sure how Braille will help him in the
future, but he believes it will help him and that it is a good tool for him
to have. He says that right now learning Braille is like learning a
completely new language. His advice to new Braille learners? "Stick with
it, because it will be worth it in the end."
Ben has been learning Braille now for a year. This summer he has taken to
doing his reading while his older brother is at the table working on his
models. Normally he is reserved about discussing his Braille learning. But
today, when his brother asks him what he is doing, Ben says that he is
practicing "scissor-reading." He explains that it is a method of moving his
hands on the page that will help him read faster. As he shows his brother
how it works, my older son says in awe that it is "really cool." With an
element of pride in his voice, Ben says, "Yeah, it is."
Today Ben finished reading his first Braille novel. I ask him what he
thought about it. In typical teen fashion he shrugs his shoulders, gives me
a sly grin, and tells me that he "saw the end coming."
Caption: Robert Jaquiss
The Encyclopedia and Me
by Robert Jaquiss
>From the Editor: Schools provide formal education that plays a crucial role
in the development of all children, both blind and sighted. However,
education doesn't stop when the student leaves the classroom. Family and
community can create an environment that provides opportunities and fosters
lifelong learning. In this article, Robert Jaquiss pays tribute to his
parents for making sure that he had a learning opportunity that many of his
sighted peers took for granted. He tells the story of his parents' quest to
acquire a Braille encyclopedia that he could use at home.
In 1963, when I was ten, it was common for parents to purchase
encyclopedias for their children. These expensive books would be carefully
shelved and available for use at any time of the day. Encyclopedias could
be purchased by mail order, but often they were marketed by door-to-door
salespeople. There were numerous encyclopedias to choose from, including
the Encyclopedia Americana, Encyclopedia Britannica, Britannica Junior,
Compton's, Grolier, and World Book. Parents could purchase additional
reference books through the encyclopedia company such as a dictionary or
world atlas. Annual yearbooks, also available for purchase, kept the
encyclopedia up-to-date.
In 1960 the Field Enterprise Company and Field Foundation provided funds to
make the necessary plates so the American Printing House for the Blind
(APH) could produce a Braille version of the World Book Encyclopedia. The
plan was that each state could acquire two copies, one for its school for
the blind and the other for the regional library. The copy at the regional
library could be lent out to borrowers one volume at a time.
One fall, when my family attended the Oregon State Fair, Volume 1 of the
Braille encyclopedia was on display. I don't recall whether it was
displayed at the World Book booth or the booth for the Oregon State School
for the Blind, but the book got a lot of attention. Visitors were impressed
by the size of the large Braille volume. Volume 1 started with A (the
history of the letter) and ended with Adverb. The encyclopedia volumes and
dictionary volumes are the largest Braille volumes ever produced by APH.
The production of the Braille encyclopedia was a monumental undertaking.
The complete 1959 World Book consists of one hundred and forty-five volumes
that take up forty-three-and-a-half feet of shelf space. There are 38,400
Braille pages in the set. In 1962 my parents determined that I would have
my very own copy of the World Book Encyclopedia.
I knew that my parents wanted to get me an encyclopedia, but at the time I
wasn't told of all they did to acquire one. They began by writing letters
and making phone calls to find out how it might be possible. Hoping to
impress the World Book company, my father signed up to sell encyclopedias.
He spent one summer traveling about town, showing the encyclopedia to
perspective customers. Since he couldn't sell a product he wasn't familiar
with, at home we had a variety of the company's products: the World Book;
Child Craft, a two-volume dictionary; an atlas; and Cyclo Teacher, complete
with all the packets of sheets-but of course all these resources were only
in print.
One day in the summer of 1963, my father said, "Rob, let's go to the lumber
yard." The lumber yard was always an interesting place to visit. On the
drive I asked what we were going to purchase. My father told me that he
thought I should have more bookshelves in my room. This seemed odd, since I
already had close to forty feet of shelf space on one wall.
At the lumber yard Dad bought ten-foot lengths of twelve-inch shelving.
This was an expensive way to get shelves. Other times when shelving was
needed, Dad bought plywood and ripped it into lengths of the desired width.
This time he bought the sturdiest shelf brackets the lumber yard had to
offer. Back at home Dad and I mounted the shelves. When we were done, I had
fifty more feet of shelf space.
A day or two later, I received a Braille copy of a letter from APH. The
letter informed me that during the next eighteen months I would receive the
Braille version of the World Book Encyclopedia in installments. The week
before, my parents had received a letter from APH informing them that, if
they would send the princely sum of $661.25 within three days and if APH
did not get a prior claim, they could purchase an encyclopedia for me. I am
not sure how much my father was paid as a teacher, but he certainly didn't
have $661.25 on hand. He took out a loan from the credit union in order to
raise the funds.
Eventually, our mailman arrived with a huge box in his push cart. The box
was nearly two feet long and a foot square. It held the first eleven
volumes of the encyclopedia. I hauled them upstairs and arranged them
carefully on my new shelves. Every few weeks, another big box arrived.
Eventually, my 1959 edition of the World Book Encyclopedia was complete. In
1964 and 1965, I received two yearbooks, each of which comprised six
volumes.
I spent many happy hours reading that Braille encyclopedia. It helped me
graduate with honors from Silverton Union High School in 1971. In 1972,
while I was attending what was then known as Oregon College of Education
(OCE), an effort was made to acquire Braille reference books for the
library. The library purchased the 72-volume set of the New World
Dictionary of the American Language. This small dictionary occupied twenty-
four feet of shelf space. Not needing an encyclopedia at home any longer, I
lent it to the library. There it was available for use by the blind
students who attended OCE.
I graduated from college and went on to work at Tektronix. On occasion I
thought of the encyclopedia that had meant so much to me and my parents. By
then it was long out of date, and I didn't have room for it anyway.
In the early 1990s a fire broke out at the Oregon State School for the
Blind, damaging the library. The encyclopedia was contaminated with soot.
When the students read it they got soot on their hands, and they left marks
on everything they touched. The teachers complained that the children were
reading "dirty books." I was pleased to offer my encyclopedia to replace
the copy that had been damaged.
Visitors to the fourth-floor conference room at NFB headquarters in
Baltimore may browse through a copy of the 1959 World Book Encyclopedia and
the New World Dictionary of the American Language. Thanks to the
persistence of my parents, I am one of the few blind people who ever had a
copy of the Braille encyclopedia at home.
Today print encyclopedias are fast disappearing. I believe that World Book
and Grolier are the only two publishers who still offer hard copy versions.
All of the encyclopedias are now available online on a subscription basis,
and most are accessible to people who use screen readers. Blind students
now have access to the vast storehouses of information that are available
to their sighted peers. But few children, blind or sighted, will experience
the delights of poring for hours over the magical volumes of an
encyclopedia that they can hold in their hands, discovering treasures of
knowledge to last a lifetime.
PASSAGES
Caption: Holly Connor
Singing into the Mainstream
by Katie Sears
>From the Editor: In 2018 and 2019 Holly Connor was the first-place winner
in the Grades 6-8 category in the Nationwide Braille Readers Are Leaders
Contest. I was intrigued when her mother explained that Holly is intensely
involved in community theater and reads novels on her BrailleNote during
her down time backstage. In this article, Katie Sears tells her daughter's
story. You can learn more about Holly and her rising career by visiting
www.hollyconnor.com.
On November 22, 2004, Holly Lynn Connor was born in Seattle, Washington,
with no complications. However, from day one she cried nonstop, and we
noticed that she never seemed to look at us. During many visits the
pediatrician assured us not to worry; Holly's eyes were simply developing
at a slower rate than usual.
By the time Holly was four months old she showed no improvement. At that
point she was diagnosed with two rare conditions, septo-optic dysplasia
(SOD) and pan-hypopituitarism (hypopit). In hypopit a person has decreased
secretion of the hormones produced by the pituitary gland. These hormones
control growth and several other factors. The optic nerves of a person with
SOD are small and poorly developed. Typically, a person has more than a
million nerve fibers from each eye to the brain, but people with SOD have
far fewer connections. Holly is rare in that she is affected in both eyes.
She could see little to nothing at birth. Few online resources or support
groups were available when Holly was diagnosed, and I felt that I was alone
in the world with no answers. To date, the cause of SOD remains unknown.
STEM-CELL TREATMENTS
In addition to being blind, Holly displayed signs of autism from an early
age. She had obsessive-compulsive behaviors and spoke in single words
rather than full sentences. Until she was three years old she wouldn't walk
outside, eat solid food, go anywhere that had fluorescent lighting, or
sleep through the night. She refused to wear shoes or any clothing below
the knees or beyond the elbows. And she cried pretty much constantly.
Needless to say, those first four years were a difficult time!
When she was four years old, we took Holly to China for seven weeks to
receive stem-cell treatments. The effect was miraculous! The treatment was
geared toward her vision, but we saw nearly a 50 percent improvement in her
autism symptoms almost immediately. Roughly two years later improvements in
her vision also became apparent. Before we went to China she could only see
objects that were an inch or two away. As her vision improved she could see
contrast and movement up to ten feet away.
Encouraged by the success of the treatment in China, we booked a round of
stem-cell treatments in Panama when Holly was twelve. The trip was shorter
this time, lasting only seven days. Since that visit Holly has seen
additional reductions in her autistic symptoms, and her vision improved
still more. She now picks up contrast and movement up to thirty feet away.
One of the most clear-cut examples of the change in Holly's autism symptoms
is the reduction in her anxiety level. Before we went to Panama her anxiety
was nearly debilitating at times. Another change is her increased
willingness to expand her diet. Like most kids with autism, Holly would
only eat about five foods prior to our Panama trip. Now she eats nearly
everything we put in front of her, though she always objects at least once
to a new food. Pizza, burgers, and tacos top the list of her dinner
preferences, though we keep her on a diet that is free from gluten, soy,
sugar, and dairy products. In 2020, Holly will go through another round of
stem-cell treatment, most likely in Panama again. We are hopeful that
centers offering this treatment option will open in the U.S. in the
reasonably near future.
MUSIC
Holly has extraordinary musical talent. When she was only a month old, we
played a Winnie-the-Pooh tape, and she immediately stopped crying. After
that, our house was filled with music twenty-four hours a day. Music seemed
to be the only thing that calmed her.
When Holly was six months old we placed her at the piano, and she started
to play the keys with her hands and feet. At age one she was able to count
to one hundred, sing the alphabet backward, and play simple notes on the
piano. At this point we realized she has instant memory.
By age two Holly could play any song she heard by ear on the piano. When
she was three we discovered that she has perfect pitch and vibrato. She
could tell you the key of any song she heard on the radio. Holly learned
Braille at age three, and she has had a passion for reading ever since. She
is a big fan of The Land of Stories series, as well as the Harry Potter
books.
When she was four years old we started Holly on piano lessons with a
teacher who was specifically trained to teach kids with autism. By age
seven she could recognize and play complex chords and memorize and play
songs after hearing them only once.
When she was eight Holly picked up the harmonica and the recorder. At
around this time she started to be more comfortable in public, so we
attended live theater and kids' performances together every weekend.
At age nine Holly joined her first choir at her elementary school and
started working with a vocal coach. She also attended her first vocal and
piano classes at a facility that worked specifically with kids with
disabilities, pairing them with typical kids. That year she gave her first
performance at a summer camp. The song was "Do-Re-Mi" from The Sound of
Music, and she sang the part of Maria. This experience planted the seed for
enrolling Holly in musical theater.
When she was ten Holly gave her first piano recital and entered her first
vocal competition. She sang opera and musical theater pieces, and she came
home with first-place prizes for her age group.
OPPORTUNITIES IN ST. LOUIS
Shortly after that first competition we moved to St. Louis due to my
husband's job. The move proved to be a huge turning-point in Holly's life.
Prior to the move we knew that St. Louis has a good school system,
particularly in regard to accommodations for children with special needs.
However, we did not expect the extensive opportunities Holly would have for
getting involved in musical endeavors. These new opportunities set Holly on
the path to maximizing her potential.
In the first year after our move, Holly started to play the cello with her
school's fifth-grade orchestra program. She also joined her first formal
choir, one of the St. Louis Children's Choirs. Holly even sang in her first
musical, Space Pirates. As this was a new endeavor for everyone involved,
she performed her scenes sitting in a chair.
The following year, at age eleven, Holly started taking voice and musical
theater classes. Through contacts we were making in St. Louis, we realized
it was time to engage Holly in the next level of musical theater. It was
time for her to move a step beyond the productions where everyone in the
class or camp gets to be in the show.
The first time Holly was exposed to a traditional audition process involved
a show called Seussical. Between all the waiting and the process of
learning choreography on the fly, we worried about how she would handle the
whole experience. She handled it terrifically, and now she was going to be
in her second show. This time she did limited choreography, and she even
had a speaking line. Seussical proved to be a great learning experience.
Between the late evening rehearsals, the professional environment, and the
immersion in a show with children ranging in age from six to nineteen,
Holly experienced something we previously thought would be out of her
reach.
After that show, the schedule started to fill very quickly. The next year,
when she was twelve, Holly was cast in eight consecutive shows with three
named roles, including Glinda in Wizard of Oz, Fairy Godmother in
Cinderella, and Mama Ogre in Shrek. Incidentally, she takes her BrailleNote
Touch pretty much everywhere she goes, and she is known for reading during
down time backstage, of which there is plenty.
At that time we also enrolled Holly in ballet lessons. We realized she
needed to work on her dancing, both for the ability to participate more
fully in every show and for the body awareness she could gain through dance
training. Holly does not enjoy the process of learning dance or the
choreography for a new show. In fact, dance is probably one of the most
challenging things she has to do. But her will is strong, and she continues
to work on it.
Age thirteen was an even busier year. Holly was cast in ten consecutive
shows with four named roles, including Queen Victoria in A Little Princess,
Mrs. Darling in Peter Pan, Bird Woman in Mary Poppins, and Cinderella's
Mother in Into the Woods. She started taking tap lessons, joined the school
jazz band playing piano, joined another choir, and wrote her first original
song. Her song is called "A Different Story." It is about being blind and
explains how her vision has changed, both literally and metaphorically,
throughout her life. Her middle-school choir performed "A Different Story"
at a recent school concert. It was so beautiful to see something Holly
created come to life!
Through the contacts she has made in musical theatre, Holly was asked
recently to give a presentation to an elementary school as part of its
diversity and inclusion week. The thirty-minute presentation consisted of a
PowerPoint highlighting much of Holly's story. It included a few short
videos from when she was younger and ended with several songs. Holly played
two songs on the harmonica, sang two songs which she accompanied on the
ukulele, and played two songs on the piano.
Today, at age fourteen, Holly is immersed in the arts seven days a week
when she is not in school. She is in three choirs and two jazz bands. She
takes acting and dance classes and private lessons for acting, ballet, tap,
and piano. She works out every morning on her spin bike, trains weekly with
a personal trainer to improve her muscle tone, is part of a tandem biking
club half the year, and is in two or three musical theater productions at
any given time. Right now she's excited to be playing Grandma in The Addams
Family. She is also competing at the National Braille Challenge for the
second time this year.
SPREADING THE MESSAGE
The last few years have been life-changing, not only for Holly, but for
everyone around her. The musical theater community in St. Louis has been
extremely accepting and inclusive. The directors have all been
accommodating and understanding of Holly's blindness and her autistic
needs. Better still, the kids Holly is with in these shows are more
accepting than I ever could have imagined. They always seem to be looking
out for Holly, and we feel confident that she is always in a safe space.
Now that she is fully immersed in the arts community in St. Louis and
working with such a large number of kids, Holly seems to have friends
everywhere she goes. In fact, for the first time ever, she has found a best
friend who has become a huge part of her life. They talk every day, eat
lunch together at school, and are in choirs and musicals together
regularly. Her friend, Abby, has an effect on Holly that is hard to
quantify. Holly is learning what it means to be a typical teenager, how to
interact with others on a social level, and how to have empathy (sometimes
very difficult for a person with autism).
On January 1, 2019, I launched a project on Instagram,
(@365withhollyconnor). I post Holly answering a daily question from "Q&A a
Day for Kids" by Betsy Franco. The goal is to raise awareness about Holly's
life and how she navigates the world being both blind and autistic.
Recently a girl from the local high school approached me to say that her
twin brother has autism and that Holly changed his life. Because Holly has
been involved in school and has a presence on social media, peers started
to befriend her brother. Holly is showing other teens that it's okay to
talk to someone who is blind and autistic, and even to be friends. It's
okay to be unique and different.
Holly has extraordinary talents. We try continuously to keep her engaged
with the world around her and involved in as many musical endeavors as time
will allow. We want to position her for the best chance of future success
in life. Through the many ways she interacts with the world, Holly
continues to change how people see her and, hopefully, how they see,
interact with, and accept people with all abilities.
Caption: At the center of a group of girls, Mausam Mehta visits Baltimore's
Inner Harbor.
Paths and Transitions
by Mausam Mehta
>From the Editor: This article is based on a presentation given by Mausam
Mehta at the 2019 Midwest Student Seminar, "Owning Your Future," which was
sponsored by the National Association of Blind Students (NABS). Mausam is a
NABS board member, and she is active with the Virginia Association of Blind
Students.
I'm a first-year student at the University of Virginia, and I'm going to
tell you every single thing you need to know about college, so sit back-
this will take a few hours. No, just kidding! Actually I want to talk to
you about paths and transitions, how change and uncertainty ultimately
bring clarity.
My passion for math has led me to a school brimming with spirit and
launched me on a trajectory toward business school. As I speed to the end
of my freshman year, I feel that I'm where I belong. But I scaled a
mountain of doubt and uncertainty to get to this moment.
I have traditional Indian parents. When my friends were collecting Pokemon
cards and watching Star Wars, I was doing multiplication tables. At the
dinner table my dad would give my sister and me complicated math problems
to solve to hone our mental math skills. He had the philosophy, "If you
don't know the right answer, don't say anything." I'd like to think I've
integrating that idea into all aspects of my life, but that would mean I'm
always right-and even I can't pretend that's true!
Discussion around college became a focal point of my life early on. In
second grade, as I labored over long division problems that took up entire
Braille pages, I heard my parents shout their congratulations over a long-
distance phone line to my cousin in India, who had just made it into the
top med school. When I was in sixth grade I wrote my first research paper,
a whopping two pages-in Braille, not print-on Helen Keller. I dedicated a
page and a half of this novel to her success at Radcliffe College, despite
the low expectations she faced. Her triumph helped fuel my efforts in
school.
Fast forward to high school, sophomore year. I was rocking baggy jeans and
a ponytail, and I preferred to spend my time rolling around on the goalball
court at the nearby school for the deaf and blind. My favorite subject was
Latin, not even a core subject, and I could rattle off Shakespeare's
"Sonnet 23" faster than I could remember any of the elements on the
periodic table. It was evident to me that something was changing.
In my school district we had the opportunity to apply to two-year programs
that would take us out of our traditional schools for half a day to
specialize in a particular area. During our junior and senior years we
could spend our time concentrating in STEM fields or in the visual arts at
the Governor's School, or we could obtain a certification in a trade at the
technical center. The application processes for these programs were quite
competitive. Many of us spent the latter half of our sophomore year
obsessing over our grades and résumés, who we might get recommendation
letters from, and which programs to apply to. My peers spoke confidently
about the medical internships they would procure as their senior capstones
at the "Gov School," or about all of the money they would make right out of
high school with their welding certifications. (No joke! As welders they
could make a lot of money!)
I had no such certainties. To be completely honest, I envied their
confidence in the future. As I walked through the technical center on a
class tour, I smelled grease from the auto body shop and heard the steady
banging of hammers from the architecture block. I learned later that the
students were building a house-a real house! -for a family who had lost
their home in a terrible fire. What if I were part of all this, I thought
as we continued on our way. Could I make a tangible difference in someone's
life?
I kept those thoughts to myself. Later, when my parents asked me about the
tour, I gave noncommittal answers and retreated to my schoolwork. I was
really disconcerted by the direction of my thoughts. My interest in the
technical programs did not line up with the fixed course I had planned.
My parents had raised me to work hard in school, to get good grades so I
could go to a good college and find a well-paying job. That was what I
wanted, right?
After lots of deliberation, I decided to apply to the Governor's School
with a concentration in STEM. Although this was the choice everyone
anticipated, my rationale for choosing this track had changed
significantly. I had the privilege of being accepted into the program, and
I resolved to make the most of this opportunity.
My time at the Governor's School was inarguably one of the most challenging
academic pursuits of my life. I shed quite a few tears over partial
derivatives, and I will always regard force diagrams with a healthy dose of
dislike. Sometimes, as I hammered out the final sentences of a lab report
at 3:00 a.m., those nagging thoughts would come back to me. How are partial
derivatives going to help me make a tangible difference? I knew the
knowledge I was gaining here was important, but was any of it actually
practical?
In time I began to understand that my in-depth knowledge of STEM would open
doors to many real-life applications. Maybe one day I could use my
knowledge of calculus and physics to build an even better house for a
family. Sometimes we doubt our choices to the extent that we don't really
give them a chance to show us their merit.
I don't especially enjoy reminiscing about the college application process,
so let's move on to something a little more exciting. Second semester of
senior year, though stressful, is a time when unknowns become known. Two
months after I submitted applications to eleven schools, I pored over my
options and made endless lists of pros and cons. In the end I narrowed my
choices down to two schools: one that my heart had been set on for years,
and the other one that I never would have dreamed of attending. After
touring both schools and spending hours comparing their academic programs,
I settled on the second one. Sometimes we surprise ourselves!
The University of Virginia has sixteen thousand undergrads, it sprawls over
more than two thousand acres, and it prides itself on its twisty, aesthetic
paths that often lead nowhere. When I arrived on the campus in late August,
I had no idea how many months I would spend wandering around lost. At first
I was more worried about how the food in the dining hall would taste and
whether I was going to get along with my roommate.
I can't begin to describe the roller coaster of emotions I experienced
during the first week. I had several moments of truth that formed the
foundation of my college experience. One of them came in the form of my
first economics class.
On the first day of class I walked into the lecture hall at 8:54 a.m.; this
was before I discovered the joys of sliding into class thirty seconds
before it starts! I found a seat somewhere in the middle of the massive,
echoing auditorium that held more students than my entire high school. As I
listened to the clamor of people just starting to make friends, I felt
isolated in a sea of strangers. I had expected this, I suppose, but
nonetheless it was overwhelming.
A few weeks later, in early September, I sat at my desk in my empty dorm
room, fighting a pervasive feeling of despair. College was supposed to be a
fresh start, with new friends and new experiences. Instead, I felt I was
already missing out on many opportunities. I was so lost in my thoughts
that at first I didn't realize my phone was ringing. I answered without
checking the caller ID and was surprised to find that it was our very own
Syed Rizvi, a member of the NABS board. He asked me about my experiences so
far, and after hearing my dejected answer, he launched into a monologue in
typical Syed fashion. Our conversation would change my outlook on college
into something far more positive.
"Mausam, you need to go out and make some friends," Syed told me, "and
here's how you should do it." Needless to say, that was the beginning. I
started spamming my hallmates into dinner with me. I interviewed for UVAs
oldest organization, the esteemed Jefferson Society, and somehow I got in.
I raised my hand an obnoxious amount in discussion classes, made friends
with the dining hall workers, and fell down a few sets of stairs. I laughed
a little and cried a lot during my first finals week, and I left for winter
break feeling at least a little bit fulfilled.
I have to tell you it hasn't been easy. I came out of my first semester
feeling that I had not met my academic standards. There were moments when I
worried that maybe I wasn't cut out for this college thing after all, that
all my doubts were becoming a reality. I felt that I wasn't working hard
enough, but I didn't know if I could work any harder.
As I stand here now, halfway into my second semester, I'm not entirely free
of those uncertainties. Sometimes when I'm sitting in my 9:00 a.m. class,
running on three hours of sleep, I still question my decisions. But I
remind myself that this experience is far bigger than I could ever imagine.
My dad is a small master of philosophies. He has always told me that when
you're faced with a tricky problem, start with what you know. I know that
I'm grateful to be part of a vibrant community of students and faculty that
share an endless passion for education. College is about exploring, not
limiting. I have so much to learn, but finally I feel I'm getting to where
I need to be. Each of us takes a different route with unique challenges and
victories. We may not always know whether we're heading in the right
direction, and we will not always have the right answers. We certainly do
not have it all figured out. In fact, I'm even thinking about switching my
major-but that's a different conversation.
The college experience is one of a kind. Take the time to learn as much as
you can, but don't forget to meet your daily quota of fun along the way.
It's an exciting time, so carpe diem! Seize the day!
DIVERSITY
Caption: Christopher Sabine reads Braille at his desk.
Optic Nerve Hypoplasia: Unraveling the Mysteries
by Christopher Sabine
>From the Editor: In the National Federation of the Blind, we seldom focus
on specific conditions that lead to blindness. What truly matters is the
fact that a person's vision is low enough to require nonvisual methods for
carrying out tasks that typically are performed with the help of sight. In
some instances, however, a particular diagnosis may involve a constellation
of disabilities in addition to blindness. Such disabilities can pose some
unique challenges. In this article Christopher Sabine looks at one of the
most prevalent causes of blindness in children in the U.S., optic nerve
hypoplasia, or ONH. Chris has been a member of the NFB of Ohio since 2014,
and he serves as secretary of the Cincinnati Chapter.
As a blind adult and a member of the National Federation of the Blind, I am
amazed by the diversity within our organization. We represent a wide
variety of cultures, and we come from all walks of life. We have a
tremendous capacity to absorb new ideas and perspectives.
The Federation promotes such skills of blindness as Braille, assistive
technology, and independent travel with the long white cane. In the
Federation we also encourage a set of daily living skills and social skills
necessary for blind children to become successful, productive adults. We
recognize that a confident, positive attitude, willingness to take risks,
and the ability to adapt to change are all essential for a blind child to
grow into a successful, competent blind adult.
Blind children are as unique, wonderful, and complicated as any other
children. However, I believe that some blind children experience
developmental challenges that are not related to their blindness per se,
but are a part of the underlying condition of which blindness is a
characteristic. Some children who receive (or do not receive) blindness
instruction in the educational system also have autism, behavioral
disorders, chronic health conditions, or developmental disabilities. These
additional challenges can have a huge impact on the ability of these
children to learn the skills of blindness and thrive in the general
educational environment. I believe it is vital that we do all that is
possible to enable these children to learn the values and skills they need
in order to live the lives they want. As an example, I would like to share
a bit about my own life.
I was born with optic nerve hypoplasia (ONH), which is the underdevelopment
of one or both optic nerves during pregnancy. Once considered a rare
disorder, ONH is now one of the leading causes of childhood blindness in
the United States and some other Western countries. Optic nerve hypoplasia
is typically bilateral, affecting both eyes, and this is true in my case.
The condition can also occur in one eye, known as unilateral ONH.
The underlying process that leads to the birth of a child with ONH also can
affect adjacent structures of the midline brain. Therefore, children with
ONH may experience a range of medical complications, developmental delays,
and behavioral characteristics. According to a leading article published by
the Keck School of Medicine at the University of Southern California,
between 60 and 80 percent of children with ONH have deficiencies in their
ability to produce one or more vital hormones. These include growth hormone
and thyroid hormone, which are both essential for growth and metabolism,
and cortisol, which enables the body to respond properly to physical or
emotional stress or illness. Children and adults who are unable to produce
these and other hormones must be seen regularly by an endocrinologist, and
most require daily hormone replacement.
According to the same article, 71 percent of children with ONH exhibit
developmental delays. Global developmental delays, sensory processing
disorders, sleep disturbances, attention difficulties, and seizure
disorders are common in children with ONH. However, these conditions are
seen much less frequently in adults with this diagnosis.
Sensory processing disorder (SPD) is a catch-all term used by occupational
therapists and other health-care professionals to describe difficulties
processing input through the senses. In my case, sensory processing issues
made learning Braille an arduous task. Furthermore, I did not master such
fine-motor skills as tying shoes and buttoning shirts until I was in my
teens. Food aversions are common in people with SPD, often related to the
inability to tolerate certain food textures. SPD may also involve delays in
the development of oral-motor movements such as the ability to swallow
solid foods. For further information about sensory processing disorders, I
recommend Carol Stock Kranowitz's comprehensive and easily accessible book,
The Out-of-Sync Child.
Recent studies as well as anecdotal reports from families and professionals
also point to an increased incidence of autism spectrum disorders and
autism-like behaviors in children with ONH. However, the assertion that
blind children with ONH are prone to autism is problematic. No clinical
screening tool is available for diagnosing autism spectrum disorders in
blind children. Nearly all screening instruments used to test for autism
spectrum disorders were developed based on a population of typically
sighted children. Furthermore, a high percentage of children on the autism
spectrum are considered to be primarily visual learners, based on
diagnostic and testing criteria established by sighted, typically developed
clinicians and evaluators. Our understanding of how blind children process
information using brain structures typically associated with visual
processing is in its infancy.
When a blind child rocks, engages in constant, rhythmic hand-flapping, or
repeats words or phrases in a sing-song voice, we cannot say with clinical
certainty that the child's behavior indicates autism. The symptoms may be
related to factors that are specific to the experiences of a blind child.
For this reason, some clinicians are reluctant to diagnose autism spectrum
disorder in a child who is blind. Nevertheless, studies suggest that 46
percent of children with ONH display significant autistic behaviors or
could qualify for a clinical diagnosis of an autism spectrum disorder,
independent of visual acuity. This finding suggests a neurological basis
for the presence of a clinically significant autism spectrum disorder in
many children with ONH.
Children with ONH often need intensive services from disciplines such as
occupational and speech therapy as well as the more typical instruction in
Braille, cane travel, and assistive technology, to alleviate developmental
delays or behaviors associated with the autism spectrum. These services are
insufficient or nonexistent in most school systems.
When I was born my family had no knowledge of the autism spectrum or of
sensory processing difficulties. When I was about six months old, I began
looking directly into the sun, and my parents suspected that I was blind.
My mother took me to a local ophthalmologist, who diagnosed me with ONH.
While I understood what my mother was saying at ten months, I did not speak
until I was three years old. My mother remembers that my speech delay was
due to my difficulty coordinating the muscles of my mouth to produce
intelligible sounds. Such speech delays are not uncommon in children with
ONH. When I finally did speak, I spoke in complete sentences.
For as far back as I can remember, I was obsessed with certain sounds and
with topics related to sound and music. My primary interest was the sound
of telephone switches from different exchanges. (This was back in the days
of rotary dial and touch-tone land lines.) I learned every area code in
North America, and I could tell where a person was calling from by the
sounds of the local and long-distance switching equipment. I spent hour
upon hour dialing numbers and listening to the sounds of calls as they
traversed the network. I know of a few blind people who gained some
notoriety for this area of expertise, but obsessing on telephone exchanges
was not a way for me to make many friends. This didn't matter much to me,
though, as I had no real interest in interacting with kids my own age.
I also loved beeping electronic games, and I spent hours playing with my
electronic toys. One of my favorites was the Speak and Spell, a handheld
educational toy designed to help children learn spelling. A synthetic male
voice would speak a word, and you would spell it on a keyboard. Add-on
modules contained more challenging vocabulary and other games. In short, I
craved anything that gave me immediate auditory feedback-especially if it
was musical or electronic. Indeed, my favorite word throughout much of my
childhood was "beep."
I had perfect musical pitch and learned to play the piano when I was four.
However, I lost my musical skill after I started attending first grade at
my local elementary school. I also had an exceptional autobiographical
memory, and I could compute difficult math problems in my head.
Braille and fine motor skills were another matter entirely. I attended a
preschool and kindergarten program for blind students at a public
elementary school, and I had one of the best TVIs (teachers of the visually
impaired) in our state. Nevertheless, my first attempt to learn Braille was
a nightmare. The letters on the Braille page felt rough and abrasive, and
remembering how dots were supposed to form letters was laborious.
Processing the Braille code was a tedious, frustrating ordeal, and I
physically resisted my teachers' efforts to run my hands over the Braille
page. This reaction is sometimes referred to as tactile defensiveness. It
is common in children with ONH due to delayed information and sensory
processing. I remember one incident where I became so frustrated trying to
read the word horse that I had a crying meltdown and refused to cooperate
with my teacher.
Like many children with ONH, I also dealt with behavioral challenges and
difficulties with self-regulation, some of which I still face to this day.
My behaviors included rocking, hand-flapping, picking at scabs, and crying
when I was frustrated, anxious, or overstimulated. Although I have outgrown
many of these behaviors, impulse control and behavior management still take
conscious effort.
My family and I decided to abandon Braille about midway through my first-
grade year in favor of a closed-circuit television and recorded books.
Through high school I attended regular education classes in my local school
district, where I was the only blind student. I was the school's human
calculator, but reading print for any length of time was frustrating and
physically exhausting for me. While I had a few friends in grade school, I
had trouble relating to peers-particularly if the play was not on my own
terms.
I received occupational and speech therapy as well as orientation and
mobility instruction until I was in eighth grade. I also attended a summer
youth program for three years at the Clovernook Center for the Blind and
Visually Impaired. There I learned most of the daily living, communication,
and travel skills I use to this day-including dressing, tying my shoes, and
using a long white cane. I learned to use our local bus system, and I was
introduced to screen readers and other assistive technology.
During my freshman year of high school, after I had finished my third year
in the summer youth program, something curious happened. I noticed that
many fine motor skills, such as plugging in appliances, were suddenly much
easier for me to perform than they had been in the past. It was as if I had
downloaded external software into my brain that enabled me to perform these
tasks. I finally learned Braille in much the same way. I sought out Braille
instruction the summer after my freshman year of high school from a local
agency for the blind as part of a state program for blind youth
transitioning to employment. I found that I could read the first ten
letters of the Braille alphabet with ease after only one day, and I learned
the rest of the alphabet within a month. Memories from my attempts to learn
Braille in kindergarten and first grade came flooding back, as if my brain
finally had become able to process my earlier experiences. With the support
of a blind colleague who is now a teacher of the visually impaired and a
leader in our state NFB affiliate, I began reading literary Braille and
finished my first Braille novel, J.D. Salinger's The Catcher in the Rye.
While I still deal with aspects of ONH every day, I live as active a life
as I can. I graduated cum laude from college and earned a master's in
social work. I worked for three-and-a-half years as a service coordinator,
helping youth with chronic health conditions and disabilities transition
out of high school and develop plans for their futures. I now operate a
consulting firm specializing in educational support and community referrals
to families of children with ONH. In my business I apply the knowledge and
skills I learned from my professional training and my personal experience
as a blind adult with ONH.
Most children with ONH have the potential to lead successful and fulfilling
lives, despite a fairly complex set of challenges. I am shocked and
saddened at how many children with ONH are placed in segregated classrooms
for children with more significant developmental disabilities. These
placements are wholly inappropriate for the majority of children with ONH,
who have the capacity to achieve far beyond the expectations of many of the
professionals who work with them.
I believe that children with ONH and other etiologies of blindness can
benefit from many of the educational supports geared toward children on the
autism spectrum. These supports emphasize social skills, reading and
reacting appropriately to nonverbal cues, and managing or eliminating
socially unacceptable behaviors. For me, learning to conduct myself in a
socially acceptable manner has taken an ongoing, conscious, and concerted
effort.
How can the National Federation of the Blind promote equality, security,
and opportunity for children and adults with ONH, or indeed, for all blind
people who have disabilities in addition to blindness? We have amassed a
comprehensive body of knowledge of best practice in teaching and mentoring
blind children and adults. We have found ways to encourage tactile fluency
and Braille literacy, and we have developed and advocated for equal access
to information. We have championed the use of structured discovery for
travel in a wide variety of unfamiliar and complex environments. All of
this knowledge has been developed and disseminated by the blind speaking
for ourselves. However, though the Federation has a division for people who
are deaf-blind, knowledge about how to raise, educate, and foster the
development of blind children with other disabilities is still very
limited.
I believe we need to educate ourselves about the most effective strategies
to help people with a variety of medical, behavior, and learning
characteristics. We must find ways to help them develop the skills and
attitudes they need to achieve their dreams. We have made monumental
strides to develop and advocate for the supports necessary for blind
people, but don't let us forget the blind child who operates on the autism
spectrum or the child who needs extra support to learn Braille. Let us help
the blind child who has trouble interacting with blind or sighted peers.
Blind people with other disabilities can teach us a great deal about
alternative means of living our everyday lives, and about blindness itself.
I believe it is important that we collaborate with professional and
consumer organizations that serve other disability groups. From children
and adults with disabilities such as autism and complex medical conditions
we can learn a great deal about how people with diverse experiences develop
their capabilities.
Finally-and most importantly-I believe that we need to promote high
expectations for all children and adults who are blind, including those who
have other disabilities or alternative learning characteristics. One of the
great guiding philosophies of the National Federation of the Blind is that
blindness is not the characteristic that holds a person back. We live this
philosophy every day of our lives as Federationists, and we instill it into
all the work we do. We view blind people as inherently capable of
benefiting from education, engaging in fulfilling careers, raising
families, and enjoying all that life has to offer. Similarly, the emerging
neurodiversity movement is predicated on the right of those with autism
spectrum disorders and other neurological differences to speak for
themselves, achieve equality, and live meaningful and productive lives.
REFERENCES
Fink, C. and Borchert, M. (2011) "Optic Nerve Hypoplasia and Autism: Common
Features of Spectrum Diseases." Journal of Blindness & Visual Impairment.
105 (6), 334-338.
Kranowitz, C.S. (2005) The Out-of-Sync Child. New York: TarcherPerigee.
Ryabets-Lienhard, A., Stewart, C., Borchert, M. et al. (2016) "The Optic
Nerve Hypoplasia Spectrum: Review of the Literature and Clinical
Guidelines." Advances in Pediatrics, 63, 127-146.
FINANCE
ABLE, A Tool for Life Planning
by Carol Akers
>From the Editor: Many parents agonize over financial planning for their
children with disabilities. How can they ensure that their child will
receive adequate care and will be able to enjoy a comfortable and rewarding
quality of life? In this article Carol Akers introduces an exciting new
option, the ABLE account.
It's too good to be true! There must be a catch! That's what I told myself
after each of the three presentations I attended explaining the ABLE Act of
2014. After three presentations by three different organizations, I was
sure I would figure out what the catch was and why ABLE wouldn't fit into
my son's life. I read everything on the website, and I even called the 1-
800 number with some of my questions. I didn't actually expect to get
answers from real people, but I did.
Millions of people with disabilities depend on public programs that provide
health care, housing, and other forms of assistance. In order to be
eligible for these programs, however, a disabled person may not have more
than two thousand dollars in cash savings or retirement funds. In other
words, to remain eligible for crucial benefits, a person must remain poor.
ABLE stands for Achieving a Better Life Experience. The ABLE Act recognizes
the ongoing costs of living with a disability, including accessible housing
and transportation, personal assistance, and assistive technology. ABLE
accounts are tax-advantaged savings accounts for people with disabilities
and their families. Contributions to the account can be made by any person,
such as a friend or family member.
In January 2018 I finally took the leap of faith and opened an ABLE account
for my son, Dustin. In Ohio, where we live, the program is known as STABLE
(State Treasurer's Achieving Better Living Experiences). I opened the
account more out of curiosity than need, since it only required a fifty-
dollar deposit to set it up. The process was much simpler and quicker than
I expected, and the website was very user friendly and intuitive. I had not
yet decided how the account would benefit my adult child with disabilities.
However, as his parent and guardian, I realized that I was spending money
from my bank account for things that perhaps could come out of his ABLE
account instead.
When you live in the disability world, life has a way of throwing
unexpected surprises at you. Just a few months after I opened the ABLE
account, Dustin's father, my ex-husband, died suddenly and unexpectedly.
The account was the perfect place to have State Farm deposit the small life
insurance policy that was left to my son. In this way the money did not
become a resource that would push Dustin over the financial limit for
services he needs. The account helped us avoid a Medicaid headache!
Naturally I had to spend some time educating the insurance office about
what the account was and assuring them that it was legitimate. They finally
understood when they received verification from the program. That deposit
into Dustin's account gave us the ability to open a Special Needs Trust,
which is also considered a QDE, or Qualified Disability Expense. Since I
opened the account, I have used the reloadable debit card option to
transfer funds from the account as needed in order to purchase things for
Dustin. The account helped us purchase new bedroom furniture, a new
transport wheelchair, new shoes, batteries for Dustin's favorite musical
items, haircuts, and his lunch with staff. All of these purchases are
considered QDEs because they make a difference in the quality of Dustin's
life. Finally, we can move beyond the Bank of Mom!
How does the account help increase Dustin's health, independence, and
quality of life? Dustin is very social. He loves to meet new people,
travel, shop, and experience new things. He enjoys going to fairs,
festivals, and concerts. He likes to visit friends and family, to go
swimming, and to eat out. The ABLE account provides many opportunities for
Dustin to do the things that enrich his life.
Here are a few fast facts about STABLE.
. It is not just for Medicaid recipients!
. The Ohio Treasurer's Office has given more than one thousand
presentations over the past three years to educate families and
individuals about this program and spread the word. Ohio was the first
state to introduce the ABLE program, and enrollment is open to
eligible persons from any state.
. As of January 2018, more than forty ABLE programs nationwide welcome
eligible individuals to open ABLE accounts. Most of these programs
enroll individuals regardless of their state of residence.
. If a person developed a disability before the age of twenty-six, even
if it was not diagnosed until later, he or she may be eligible for an
ABLE account. One account can be opened per person.
. Anyone can contribute funds into an ABLE account up to the maximum of
fifteen thousand dollars in a given year. (This level may increase as
the amounts change for the 529 College Savings Plan.)
. If a person with a disability is working, he/she may contribute an
additional $12,140 per year for a total of $27,140 per year, up to a
lifetime maximum of $468,000.
. Persons in Ohio (such as parents, other relatives, or friends of
account holders) qualify for up to $4,000 in state tax credits for
their contributions. This amount varies from state to state, as does
the amount required to open the account and any maintenance fees.
. Excess funds can be placed in the ABLE account if the person with a
disability needs to keep resources under two thousand dollars in order
to protect government benefits.
. The account allows a person to save or invest money in multiple ways.
. Qualified Disability Expenses are interpreted very broadly. They may
include rent, home expenses, transportation, leisure activities, and
technology, as well as medical expenses, co-pays, and even funeral
expenses.
. Money from the ABLE account cannot be spent on alcohol, tobacco,
gambling, pornography, or gifts to others. It can only be used for the
account holder's needs.
. The debit card may be loaded with up to fifteen thousand dollars, the
maximum yearly account limit. The money is still considered to be in
the account, and therefore it is not a resource for the purposes of
Medicaid and other services.
. The debit card is a great way to help teach financial literacy to
youth while maintaining the ability to monitor spending.
. At the time of the account holder's death, after all burial expenses
and liabilities are paid, Medicaid may ask for repayment if there is
anything left in the account. Some states are working on legislative
measures to have this rule changed.
The key to having an ABLE account is to use the money. Spend it and enjoy
life!
I see the ABLE program as an important tool to help change the mindset of
persons with disabilities and their families. It can create new options for
independence while it improves daily life. I share these points whenever I
meet families with special needs, whether families of disabled children or
adults. This program truly offers a wonderful change for the disability
world.
PROGRAMS
Caption 1: Mara Oneichu sits at a drafting board, using a print/Braille
ruler.
Caption 2: Jesse Fung conducts an experiment to determine the amount of
stress on building materials.
Caption 3: Natalie Shaheen leads a group of STEM EQ students as they
explore the Jerusalem Mill Living History Museum in Kingston, Maryland.
A Place of One's Own: The 2019 STEM EQ Program in Baltimore
by Natalie Shaheen
>From the Editor: The NFB has long recognized that blind students face
serious challenges in gaining access to opportunities in mathematics and
the sciences, due to the emphasis on visual learning when these subjects
are taught in mainstream classrooms. For more than a decade the NFB has
hosted summer opportunities in the STEM fields (science, technology,
engineering, and mathematics), showing blind students that they are capable
of pursuing STEM studies and careers. In this article, project director
Natalie Shaheen describes the most recent NFB STEM program, the 2019 STEM
EQ.
In June 2019 I was thrilled to join thirty blind high school students who
gathered at NFB headquarters in Baltimore for a week of learning and fun in
STEM EQ. STEM, of course, stands for science, technology, engineering, and
mathematics, and EQ refers to "engineering quotient." Made possible through
a generous grant from the National Science Foundation (NSF), STEM EQ gives
blind students hands-on experience in the STEM fields. The NSF grant
provides for STEM EQ programs in 2018, 2019, and 2020, and for two programs
to be held in 2021. Each program focuses on structural engineering.
Structural engineering is sometimes described as the practical side of
architecture. Architects are largely concerned with aesthetic effect when
they design a building. They think about how people will use the space, and
they try to design places that will meet human needs. Using architectural
blueprints, structural engineers figure out how the building actually can
be constructed. What sort of interior beams and braces will be needed to
keep the structure intact? How can the floors be made strong enough to
withstand the weight they must carry? Can the building survive if an
earthquake strikes?
"What would you build if you could create a place of your own?" This was
the framing question we asked the students for the 2018 and 2019 STEM EQ
programs. The students let their imaginations rove freely, and each of them
came up with an idea. Whether it was a recording studio, a carpentry
workshop, or a country getaway, each building had to meet a given set of
criteria and constraints. Criteria are things that a design must do, and
constraints are things it cannot do. For example, one criterion was that
the place must be an enclosed space. It could not be a gazebo with open
sides or an amphitheater open to the sky. A constraint was that the place
couldn't exceed 130 square feet. If you build a structure of less than 150
square feet, usually you don't need to get a permit.
Few of the students had ever been exposed to drawing. They had almost no
experience examining or creating pictures or diagrams of any kind. Once
they decided on the building they wanted, they began to experiment with
designs. Instead of drawing their designs they worked with a variety of
arts and crafts supplies. They built "scratch models" with toothpicks, pipe
cleaners, construction paper, aluminum foil and other materials.
At the next stage, the students were introduced to some of the disciplines
they needed as structural engineers. They tried some basic drawing with the
Sensational Blackboard. They learned what engineers mean when they refer to
an orthographic projection or an isometric perspective.
One kind of technical drawing the students learned to read and create is
called a multi-view drawing. A multi-view drawing allows someone else to
understand the place you want to build. Usually a building can be shown by
drawing three views: a top view, a front view, and a right side view. The
students had to create multi-view drawings for their structures. Students
and instructors worked out tactile conventions to represent the specific
line types used by architects and engineers. In determining these tactile
conventions, they tried to stick as closely as possible to the conventions
that are used in visual drawings. This system is a work in progress! We're
still trying to figure out the best way to represent the nuances of visual
drawings in a tactile format.
One of the constraints the students had to keep in mind was that their
buildings had to be able to support the weight of heavy snow. In fact, each
building had to be strong enough to hold the amount of snow that might fall
during a winter in Alaska! To calculate the strength of their buildings,
the students learned about force propagation, the ways that forces move
through a structure. If five feet of snow is piled on the roof, how is all
that weight distributed throughout the building? As they worked out these
calculations, the students discovered the practical value of studying math,
especially trigonometry.
All of the students did the mathematical calculations for their own
structures. For some, who had never had proper access to the material in
their math classes, these calculations presented real challenges. Many of
the structures were fairly basic in form-rectangles, squares, or pentagons.
Others were highly unusual. One student designed a structure with nineteen
sides!
With the guidance of David Neitfeld, the woodworking instructor at the
Colorado Center for the Blind (CCB), the students next created scale models
of their structures. According to the scale, one inch represented one foot,
so a building that would be 130 feet wide when completed would be 13 inches
wide as a model. To build their models, the students used balsa wood and
worked with some basic hand tools.
By Friday, the final day of the program, each of the students had a set of
"deliverables" to display. These deliverables were as follows:
. Graphical artifacts (drawings)
. Algorithmic artifacts (mathematical calculations)
. Scale models
. Narrative artifacts (self-reflection on the experience)
The students displayed their work at a grand expo on Friday. NFB staff
members, parents, and members of the community visited one display after
another. Everyone asked questions and marveled at the ingenuity the
students had shown.
In the 2019 STEM EQ program we were very fortunate to have outstanding
instructors. Wade Goodridge from Utah State University has worked with NFB
science programs for the past six years. He began his career teaching
industrial arts at the high school level, and he later moved on to become a
hydraulic engineer. Although he is sighted and had no experience with blind
people before he came to the NFB, from the beginning he was comfortable
with the young people in our STEM programs. He brought two of his graduate
students to the 2019 STEM EQ.
Peter Anderson was another STEM EQ instructor. He develops programs at the
Science Museum in St. Paul, Minnesota. Ann Cunningham, a tactile artist who
teaches art at the CCB, shared her expertise in raised-line drawing.
Another instructor was Melissa Lomax, who formerly coordinated programs for
blind youth through BISM (Blind Industries and Services of Maryland). Chris
Meyer and Daniel Belding, both from Indiana, served as blind mentors.
Although they couldn't join us in person, several blind professionals spoke
with the students via Skype. Blind engineer Nathanael Wales and blind
architect Chris Downey shared their experiences and strategies for the
workforce. Alexander Richmond, a blind student majoring in civil
engineering at the University of Alabama, and Mark Colasurdo, a blind
doctoral candidate in biomedical engineering, explained how they handle
classwork and projects. Many of the STEM EQ students felt that these
conversations were the high point of the week.
Our thirty STEM EQ students were a richly diverse group. They came from
nineteen states and one U.S. territory, Guam. They ranged in age from
fourteen to nineteen. Sixteen identified as female and fourteen as male.
Eighteen described themselves as Caucasian and twelve as coming from other
racial backgrounds.
At every NFB STEM program it is exciting to watch the students grow and
change, even in so short a time. One of our students was very strong in
math and had no trouble with any of the calculations. However, he had never
worked with tools. He had been told that carpentry was out of the question
for him because of his low vision. At the end of STEM EQ, he announced that
he would start to do woodworking when he got home. Now he knew that his
blindness did not prevent him from using tools.
The student from Guam had been sheltered in many ways. Few opportunities
had been available to her growing up. Yet her family allowed her to make
the twenty-four-hour journey from home, changing planes three times to get
to Baltimore. Making that journey was an achievement in itself!
The students worked hard to design their buildings and create their models
for the expo. But there is always time for fun at NFB events, and STEM EQ
was no exception. One evening the students went to a state park and played
beep baseball. On other evenings they went shopping, played board games, or
just hung around getting to know each other. By the time they scattered to
their homes across the country and over the Pacific, they had made new
friends and become members of our NFB family.
Caption 1: A boy reads the page in his Perkins Braillewriter at the Idaho
BELL Academy.
Caption 2: John, Van, and Will Baylor enjoy a weaving craft at South
Carolina BELL.
Caption 3: Students from the Harrisburg, Pennsylvania, BELL Academy meet
Governor Tom Wolf at the Pennsylvania Capitol.
Braille Enrichment for Literacy and Learning
by Carla McQuillan
>From the Editor: Carla McQuillan serves as president of the National
Federation of the Blind of Oregon, and she is the executive director of
Main Street Montessori. Since 2017 she has coordinated the NFB BELL
Academies.
The first BELL program was organized in Maryland in the summer of 2008
under the leadership of Melissa Riccobono and with the inspiration of
teacher Jackie Mushington-Anderson. The program grew out of the recognition
that blind children generally did not receive adequate Braille instruction
during the school year. Furthermore, they lacked exposure to blind role
models who read Braille fluently, traveled with confidence using the long
white cane, and used other skills of blindness on a daily basis. BELL is an
acronym for Braille Enrichment for Literacy and Learning. The BELL program
was created to provide fun and educational Braille-based activities for
blind and low-vision children as well as contact with blind role models who
serve as volunteers.
Over the following years, BELL programs (now officially called BELL
Academies) sprouted up in one state after another. Twenty-six states hosted
one or more BELLs in 2019, for a grand total of thirty-four BELL Academies
nationwide.
In the past the national BELL coordinator provided guidance and information
to affiliates that planned to start BELL Academies for the first time. Over
the years Natalie Shaheen and Carlton Walker each held the BELL coordinator
position. During the winter affiliates starting new programs sent two
teachers or volunteers to NFB headquarters for a weekend of intensive
planning and training. Established programs sent one person instead of two.
When I coordinated our BELL Academy in Oregon, I returned home from
Baltimore with lots of exciting ideas to share. I organized a weekend of
training for our BELL teachers and volunteers. The weekend was highly
successful. It helped us recruit volunteers and spread the word about BELL
among parents of blind children. It even brought in some very welcome
donations!
Instead of sending BELL leaders to Baltimore for training, I saw the value
of training novice BELL teams in their home states. In the winter of 2018 I
conducted training sessions for novice programs across the country. Then I
visited the programs during the summer to make suggestions and lend
support. All of this training involved an enormous amount of time on the
road. It was too much for one person to take on year after year.
In January 2019 a group of experienced coordinators of state BELL programs
conducted a training weekend in Baltimore. All of the coordinators were
experienced teachers: Michelle Chacon, Carlton Walker, Cayte Mendez, Craig
Cooper, Krystal Guillory, and me. In the winter and spring the six of us
led training weekends for affiliates that were starting new programs. Each
of us led at least one training, and some people conducted more than one.
The training process was much more manageable when we spread out the work
load.
Resources vary widely from one NFB affiliate to another, and inevitably
each BELL Academy takes on its own character. However, it is important for
all of the programs to meet the high standards established by the NFB. When
trainers visit a BELL Academy, they complete an extensive evaluation form.
Affiliates also filled out detailed self-assessments. These evaluations
help affiliates recognize the strengths of their programs and identify
areas where they can improve.
The biggest problem for many affiliates that want to run a BELL Academy is
finding a qualified teacher. One year we had to cancel our program in
Oregon at the last minute because three weeks before the start date our
teacher found out she had to take a summer course. We would like to
establish an internship program for BELL teachers. The interns would train
in Baltimore before they assist the teacher in an established program.
Developing and sustaining our BELL Academies takes money. Nearly all of our
BELL teachers are paid, and sometimes affiliates have to rent space where
classes can be held. Then there are all the incidental expenses-lunches,
Braille paper, museum admissions, arts and crafts supplies, and transit
fares. Yet most of the work of our BELL Academies is carried out by
dedicated NFB volunteers. Many of these volunteers recall how their parents
fought to obtain Braille instruction for them when they were growing up.
They want to make sure today's blind children get the opportunities they
didn't have themselves.
For the past several years Wells Fargo has been a primary donor to our BELL
Academies. Not only has the company given us generous donations; it has
contributed educational opportunities for our children as well. The 2018
BELL theme was Hands-on Banking. Several BELL Academies conducted field
trips to Wells Fargo banks. Bankers made up debit cards so the students
could try out the ATM machines. Children even were allowed to explore the
vaults where money is stored. At some banks students and bankers held
contests to see who could sort coins the fastest under learning shades. Not
too surprisingly, the children won every time!
Any time we waver in our commitment to BELL, we have only to remember some
of the children whose lives have been transformed through our programs.
I'll never forget an eleven-year-old girl who enrolled in our Oregon BELL
in 2017. She had been blind for only two years. She was being homeschooled,
and her family had very little knowledge of the resources that were
available. Her mother taught herself uncontracted Braille, but she was
unaware that there is a contracted form of the Braille code. She
transcribed as many books as she could manage, each word spelled out letter
by letter.
As soon as this child entered our BELL Academy, we put out a message on the
NFB listservs, seeking a one-on-one instructor to teach her UEB (Unified
English Braille). The more she learned, the more excited she became. When
she got her hands on a Perkins Brailler, she began to write stories. At the
end of our two-week BELL Academy she gave a presentation. "I had never been
around another blind person in my life," she said, "and now I've met seven
of them!" Her parents said they had never seen her so happy since she lost
her sight.
Sometimes we see dramatic changes in a single day. The father of an eight-
year-old boy in West Virginia worried because his son wanted to hold his
hand everywhere they went. He knew that his son needed to become more
independent, but he didn't know how to make it happen. On the first day of
the BELL Academy, the child met a group of blind children and adults who
used long white canes to get where they wanted to go. When his father came
to pick him up, the boy grabbed his cane and headed for the car on his own.
At the end of each summer we receive many heartfelt letters from the
parents of our BELL participants. "My son just finished his fifth year of
BELL, and as always, it was a wonderful experience," wrote a mother from
Illinois. "Not only do the students receive excellent Braille practice and
activities, they participate in wonderful field trips. For those two
precious weeks in my son's life he's surrounded by friends who also have
white canes and read Braille, and that is a rare gift."
Another parent wrote about the ways BELL Academy transformed her son's
life. "Three years ago my son was the visually-impaired kid who stood
against the building at recess. He had a one-on-one aide all day long. He
sat alone with his adult aide in the classroom, had special seating in the
lunchroom with the aide standing behind him, and used the staff bathroom.
For PE he practiced passing a pencil from one hand to the other. If you
have kids and want them to become independent and successful in life, you
know that wrapping them up in a bubble is not such a good idea. NFB and
BELL Academy have taught us that Thomas is not just visually impaired; he
is so much more. We have to help teach others what Thomas needs (after we
learn it ourselves from NFB and all the knowledgeable people affiliated
there), and then Thomas has to learn to advocate loudly for himself every
day. He has come a long way from that kid standing alone at recess three
years ago. He is now a member of the gifted society MENSA, and he is
looking to skip fifth grade and enter the gifted program in our middle
school. He is on the swim team, and he has friends and family all around
him. Since coming to BELL Academy through the support of its wonderful
contributors, and with the guidance and love of the National Federation of
the Blind my son will really learn to live the life he wants and deserves."
Children crave independence. When they walk into a BELL classroom, they're
encouraged to try new experiences and to explore freely. They begin to
unlock the joys of reading. They meet blind adults who are living the lives
they want. The results are magical!
Caption: Luc Gandarias competes in the Sunfair Invitational in Yakima,
Washington.
Regarding the Colorado Center for the Blind and My Experience
by Luc Gandarias
Reprinted from Braille Monitor, Volume 62, Number 6, June 2019
>From the Editor: Luc Gandarias is a sixteen-year-old high school student
from Washington State. He attended NFB STEM EQ in June, and he hopes to
become an astrophysicist. This article is based on a presentation he gave
at the 2019 convention of the NFB of Washington.
I am here to speak to you today about my summer at the Colorado Center for
the Blind (CCB). Before I talk about the main points, it is important that
I give some background. I first learned of the CCB while I was at the NFB
national convention three years ago. My mother and I were returning to our
hotel room after a lengthy general session to change and prepare for the
banquet when she noticed the CCB table. Immediately she strode over to it
with me in tow and began cheerfully firing questions at the CCB rep. I
listened curiously until I heard that the summer program lasted eight weeks
and took place all the way out in Colorado. At that point I tuned out the
conversation.
Once her voracious appetite for answers was satisfied, my mother turned to
me. "Excellent!" she said. "Guess where you're going after freshman year."
I was twelve at the time, just entering seventh grade. I was vehemently
opposed to any program that impinged upon my summer pastimes of hanging out
with my friends and playing Minecraft. Clearly I wasn't seeing the wisdom
in going to such a program, though it would provide training in the skills
I needed to realize my goals in the professional workplace.
As time wore on, I grew considerably warmer toward the idea of going to
CCB. I talked with many of my closest Federation family members, who all
thought that the Colorado Center was a perfect fit for me. They said the
experience would give me a taste of what college life might be like.
Another factor that gave me the desire to attend the program was learning
about the additional activities it offered, such as outdoor rock climbing,
whitewater rafting, and a 5K run. These activities would all be done under
sleepshades, and I was understandably underwhelmed by the idea. I didn't
realize that once you're under sleepshades for eight hours a day anyway, it
isn't a problem to put them on for recreational activities as well.
Eventually the time came for me to attend the program. My mother and I made
the journey down to Littleton so I could get situated in my apartment. It
was then that I met my counselor, a college student from Georgia named
Justin Heard. He also served as president of the Georgia Association of
Blind Students. I also met a fellow student named Brett Camen. I soon grew
quite close to both of these people.
After a three-day period of rest while everyone got to know one another,
the program came on hard and fast. The home management segment of the
program held no real difficulties for me, since I have always been expected
to cook and help out with the chores at home like any other kid. However,
even during the first week, I saw enormous growth in other students at the
program. Their counselors instructed them on how to complete basic cooking
or cleaning tasks and then turned them loose to try it themselves. Several
students came to CCB scared to open an oven. By the end of the program they
were making entire meals unsupervised. That is the power of Structured
Discovery!
Though the physical tasks of cooking and cleaning weren't difficult for me,
living with three other people was. It was exceedingly hard to keep my
possessions separate from those of the others. Several times I went on a
mad rampage around the apartment, looking for one of my dress shirts that
had inexplicably dematerialized from the hanger. To make matters even more
convoluted, my counselor and I both wore the same size clothing, and we had
pairs of khakis that were identical. This experience greatly improved my
organizational skills, which desperately needed help anyway.
The class that challenged me the most and incited the most growth in my
skills was travel. I was a competent cane user before coming to the
program, and I had experience using sleepshades. However, my skills under
sleepshades were mediocre at best. This changed very quickly. CCB mandated
that all students were to have their sleepshades on from morning
announcements until the bell at the end of the day. Initially this was
quite difficult for me, and I was caught several times peeking, but I
adapted reasonably quickly. After the second week I didn't mind not being
able to use my sight, but I minded very much the sticky, itchy,
uncomfortable nature of the sleepshades. After all, the temperature in
Littleton was in the high 90s. However, I slowly grew accustomed to this,
too.
The first few days of travel class were slow going. They mainly consisted
of basic cane techniques, but we quickly progressed to lessons navigating
intersections in the neighborhood surrounding the center. When I asked when
we would work on traveling to specific locations, I was informed that they
would start those lessons the following week.
Another week was too long for me to wait. I planned with one of my friends
to go to the Microsoft store in Park Meadows on Thursday of the second week
of the program. The store was fifty miles from the apartments, all the way
on the other side of Denver, and the trip involved three train transfers
and two buses. Actually, Michael and I had no real reason to go to this
store. We didn't need to purchase anything, nor did we have the money. The
trip was meant to challenge our problem-solving skills and to prove our
abilities to the counselors so we could take other expeditions in the
future. The travel instructors were quite willing to let me go on
independent routes or to go with another student. They even permitted me to
go to Wells Fargo to resolve an issue with my bank account during center
hours-alone, of course.
Perhaps the most beloved part of each week at CCB was the Sunday shopping
spree and cleaning extravaganza. Students would loudly complain to one
another about how long shopping took and how much they didn't want to
clean. I never found cleaning particularly grueling; in fact, it usually
took me about a half hour to clean the apartment. However, I am in full
agreement with the other students regarding the laborious task of shopping
for the week. It was mind-numbing, and it took hours. The shopper's
assistants were slow and rarely found the correct items. It took nearly two
hours to locate everything on a twenty-five-item list and get checked out.
At home I know the layout of all the local stores, and I can easily find
almost anything. A shopping trip like the one I just described would take
my family and me about twenty minutes total. In spite of this, I feel that
it was beneficial for me to do this shopping on a regular basis. I may have
a more efficient method for shopping in my area, but the experience at the
center showed me what shopping will be like when I am in college or living
on my own. In addition, creating a weekly budget to provide meals
accommodating the various eating styles in my apartment was a challenge and
a skill I needed to develop. I learned a lot about budget and compromise.
Also, I learned how expensive my favorite summer meal of Greek pasta salad
is to make when I'm not shopping at Trader Joe's.
The most highly anticipated and fun part of the program was the NFB
national convention. All eighty-nine students from the three NFB training
programs were flown to Florida to experience the magic of a national
convention. Our trip was excellent. Naturally we were required to wear our
sleepshades from eight in the morning until five in the evening, unless we
were sitting in a meeting. This amounted to very little actual time wearing
the shades, since meetings comprised most of the day. However, navigating
around the hotel under shades was torture! The place was cavernous and
echoing in one area, which was difficult to navigate, but not too bad. The
lower hall was a different story altogether. It was carpeted and lined with
tables that made shorelining impossible. The only way to navigate this
hallway was to make an educated guess where the walls were and walk as
straight as possible toward the escorts at the end of the hall. I got all
kinds of mobility practice in a vast and unknown area. It was good
experience for my fellow CCB students and for me.
General sessions were long, but they were never boring. I had had the good
fortune to attend convention three times before this summer, so I knew what
to expect. This was not the case for many of my peers, and they were
overwhelmed by the sheer number of blind people in one place. Something I
noticed among all students during the convention was the desire for
involvement in this great organization. Even the students who were most
depressed by their condition before coming to the convention were fired up
by the NFB philosophy by the end. Interacting with people who share ideas,
adventures, and prospects for the future was a new experience for many of
us.
In this speech I can't contain all that I learned at CCB, but I would like
to mention one thing before I close: I will never be a dishwasher! All
along my plan has been to go to college and study to become a physicist,
and now I am doubly convinced that this will be my path. At the end of the
program, students were assigned to an internship at various local
establishments. My job was to be a dishwasher at a local restaurant. On the
first day, the supervisor told my friend and me that he hoped this
internship made sure that we never worked in the restaurant industry! That
set the tone for the rest of the week. On the upside, we got free food and
beverages the entire time we worked there.
I also enjoyed the commute in the morning. It was rather long, since we
worked in Golden. After the first two days we were deemed to have enough
travel skills to find our own way, and we made the commute without
supervision.
Eight weeks at CCB seemed daunting at the beginning of the summer, and I
thought I would lose all my vacation. In the end, I am so happy I went to
CCB and came to know the amazing friends that I met there. I have people I
can call all across the country now. I have lifelong friends, and I got a
glimpse of what skills I need beyond my regular school day. Thankfully, my
NFB family and my first TVI, Denise Mackenstadt, set me on a good path. I
only hope that attendance at CCB will be an option for more students from
Washington State. This is not just a live-in program but a real-life
program!
REVIEW
My Father's Blood
by Amy Krout-Horn
Reviewed by Donna W. Hill
My Father's Blood
By Amy Krout-Horn
All Things That Matter Press, 2011, 177 pages
ISBN: 9780984639298
Available on Amazon: https://www.amazon.com/My-Fathers-Blood-Amy-Krout-
Horn/dp/0984639292/ref=sr_1_1?s=books&ie=UTF8&qid=1320090381&sr=1-1
Available in accessible formats at www.bookshare.org
>From the Editor: Donna W. Hill is the author of the young-adult novel The
Heart of Applebutter Hill.
If you aren't familiar with author Amy Krout-Horn, you don't know what
you've been missing! I gave My Father's Blood five stars on Amazon because
it wasn't possible to give it ten. Krout-Horn writes with feeling about her
Native American heritage-Lakota-and about the Type 1 diabetes that runs in
her family and led to her blindness at age twenty-two.
I have read many excellent novels and memoirs, but something sets Krout-
Horn's autobiographical novel apart. She has a riveting story to tell, and
she parses it out in ways that captivate the reader. But what truly makes
this book stand out is the author's use of language. Her language is
stunning without being flowery, raw without being hopeless. It is a
beautiful platform that lifts the story with love.
My Father's Blood is the story of a family, a community, and a nation, seen
through the perspective of a child and later a young woman. Most of the
story is set in rural Iowa, where the author grew up with both sets of
grandparents nearby. We also get a look at other areas of the Midwest,
including Minnesota and South Dakota, and we visit a wonderful bit of
Florida as well.
Even as a child in her mother's arms, Krout-Horn is keenly observant. She
has a pure spirituality and is at one with the natural world. The Aurora
Borealis, the lone tree on the lake, and the Lakota language itself hold
multiple meanings. They stay with the reader for their beauty; they are
signposts inviting us to go deeper.
Part of the power of this book is the way it portrays the Native American
experience as one family, seemingly white and average, deals with the
impact of assimilation over the generations. Krout-Horn's dreams and her
waking glimpses of the Lakota world draw her toward a part of her heritage
that others would have her deny.
Diagnosed with Type 1 diabetes at age six, Krout-Horn follows her father
down another road of being different, in addition to her Lakota heritage.
As a child she deals with the physical complications and the social and
emotional impacts of the disease. Classmates shun her on the playground,
afraid that diabetes is contagious. In one poignant scene she hides under
her hospital bed in an attempt to avoid having her blood drawn.
The protagonist of My Father's Blood is a bright, inquisitive girl who
displays the full range of emotions and reactions. Krout-Horn is not
reluctant to express bitterness, resentment, or guilt through her young
heroine. Her issues aren't once and done. They resolve and resurface as she
matures. To survive, she must pick herself up again and again.
When diabetic retinopathy leaves Krout-Horn totally blind, she experiences
a period of intense depression. She drops out of college and retreats to
her room. Eventually, with the love, support, and gentle humor of her
extended family, she emerges determined to rebuild her life. Her journey
leads her to BLIND, Inc. (Blindness: Living in New Dimensions), the NFB's
training center in Minneapolis. Krout-Horn describes her initial terror of
crossing streets independently and the camaraderie among the students and
staff members at the center. With the unflagging support of the BLIND,
Inc., community, she grows in confidence and gains critical new skills.
After a year of training Krout-Horn returns to college and becomes immersed
in studying the Lakota language.
I've read My Father's Blood several times, and each time I notice something
I missed before. This truly is a magnificent book!
You can learn more about Amy Krout-Horn's life and work at
https://nativeearthwords.wordpress.com/amy/
Odds and Ends
EDUCATIONAL RESOURCES
Resources for Teachers of the Visually Impaired
http://www.nbp.org
Contact: 800-548-7323
orders at nbp.org
As you jump into the new school year, National Braille Press has compiled a
list of books, products, programs, and other resources especially for
teachers of the visually impaired and the students and families they serve.
The items listed in the TVI Toolbox section include Just Enough to Know
Better by Eileen Curran, a revised primer on Braille that incorporates UEB;
Nemeth reference sheets; UEB reference sheets for math; Braille alphabet
cards; and a list of Braille transcribers.
TACTILE GRAPHICS
Creative Adaptations for Learning (CAL)
www.cal-s.org
38 Beverly Rd., Great Neck, NY 11021
Contact: Shirley Keller, 516-466-9143
Creative Adaptations for Learning (CAL) creates and produces Braille
flashcards, greeting cards, and embossed pictures that bring drawings to
life. CAL creates tactile graphics for children who are blind or visually
impaired, or those with autism, cognitive delays, and learning
disabilities. Books from CAL include Let's Learn Shapes with Shapely CAL
and Humpty Dumpty and Other Touching Rhymes.
NEW BOOKS
Pedro and the Octopus
by Deborah Kent
Illustrated by Ann Cunningham
Available from NFB Independence Market
Contact: Ellen Ringlein, 410-659-9314
When his big sister, Lena, warns him that octopuses have lots of sticky
arms for catching kids, Pedro isn't too sure that a family trip to the
beach will be fun. Pretty soon, though, he gets caught up in the excitement
of walking in the sand with his long white cane, finding shells and stones
to put into his pail, and playing in the waves. With its print and Braille
text and Ann Cunningham's captivating illustrations that appeal to both
vision and touch, this unique picture book can be enjoyed by blind and
sighted readers alike. This TwinVision® book was published by the American
Action Fund for Blind Children and Adults.
During a blind child's lifetime, he will be exposed to tactual
representations of art, graphs, charts, stars, and many other elements. The
earlier a child has access to tactile drawings and pictures, the better he
will understand these concepts and effectively interpret these
representations later on in life.
In addition to Pedro and the Octopus, the Action Fund has produced a
teaching guide for parents and teachers to help children examine and
interpret the differing aspects contained within the pages. This will
create greater exploration and discussion around the tactile elements and
creative details of this beautiful book. For more information including the
teaching guide, visit the Pedro and the Octopus page at
https://actionfund.org/pedroandtheoctopus.
Families wishing to apply to receive a free copy of this innovative book
can write to the American Action Fund for Blind Children and Adults, 1800
Johnson Street, Baltimore, Maryland, 21230, or email
actionfund at actionfund.org.
Getting Visual Assistance with an iPhone
by Judith Dixon
Available in Braille and digital formats from National Braille Press
www.nbp.org
Technology writer Judy Dixon takes the reader on a tour of the ten most
user-friendly apps for getting visual assistance with an iPhone. She
discusses apps that employ artificial intelligence for identifying colors
and currency or reading barcodes and handwritten documents. She also covers
getting sighted assistance through apps such as Aira and Be My Eyes. In
addition, she briefly discusses the nature of help itself and how there are
as many opinions on using sighted assistance as there are individuals.
INFORMATION APPS
Aira
https://aira.io
800-835-1934
Aira Tech Corp is a technology company dedicated to making lives simpler,
easier, and more fun. Aira uses the latest technologies to connect people
who are blind or have low vision with highly trained professionals who
provide visual information on demand. When some extra information can help
you save time and be more efficient, open the Aira app and make a call.
You'll connect with an Aira agent who can see your surroundings through
your phone's camera. All agents must pass robust background checks, sign
strict privacy clauses, and undergo rigorous training. In August 2019 Aira
announced that the first five minutes of any call will now be free of
charge.
Be My Eyes
https://www.bemyeyes.com
Be My Eyes is a free app that connects blind and low-vision people with
sighted volunteers for visual assistance through a live video call. Be My
Eyes is available in 150 countries, and volunteers can provide assistance
in 180 languages.
TapTapSee
https://taptapseeapp.com
TapTapSee is a mobile camera application designed for blind and visually-
impaired users. TapTapSee uses your device's camera and Voiceover functions
to take a picture of anything and identify it for you out loud. The app can
identify any two- or three-dimensional object.
TRAVEL
Blind Travelers' Network
https://blindtravelersnetwork.org
Perhaps you're a blind college student who plans to study abroad, and you'd
like to learn more about resources and nonvisual accessibility in your host
country. Maybe you're the sighted parent of a blind child, and you want to
plan vacation activities that everyone in your family can enjoy. The Blind
Travelers' Network (BTN) is here to help you. The blog section contains
blogs by several blind and low-vision travelers who have a wealth of
knowledge, experience, and advice to share. In the review section, you can
read and post reviews of resorts, cruise ships, museums, theme parks, and
other places, all written from a nonvisual or low-vision perspective. In
the discussion board section you can ask questions of other blind and low-
vision travelers. Your journey starts here!
STORIES
American Action Fund for Blind Children and Adults
Contact: Patti Chang, pchang at nfb.org
Many families participate in the Free Braille Books Program funded by the
American Action Fund for Blind Children and Adults (AAF). The AAF is
reaching out to parents, asking you please to share your stories of how
your family has used or benefited from free Braille books. The AAF shares
these stories with donors who make this program possible. The strongest
stories are those that share a little bit about your child and discuss the
impact of the program. The AAF will not use identifying information unless
you say it is okay. First names may be used to make the story personal for
the donors. Don't worry about literary quality; send the story you want to
tell, and the AAF team will polish it up for you. Thank you for your help!
SURVEY
K-12 and Higher Education Survey
https://nfb.org/edtechsurvey
The NFB is gathering information regarding the accessibility of educational
technology used in our nation's schools, kindergarten through graduate
level. If you are a student, parent, teacher, or administrator who uses
screen access software or other accommodations to participate nonvisually
in educational programs or services, or if you are the parent, teacher, or
administrator of someone who does, please complete this survey once a
semester.
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