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 East Wells Street at Jernigan Place, Baltimore, MD 21230 • 410-659-9314
https://nfb.org/nopbc • [email protected] • [email protected]
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
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:
Most states have an NOPBC affiliate chapter. You can find your state chapter at 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?
Contact Us:
National Organization of Parents of Blind Children
[email protected]
www.nopbc.org
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.
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.
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.
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."
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!
by A PDRIB Post Contributor
Reprinted from 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!
by Treva Olivero
Reprinted from 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.
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.
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!
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).
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.
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 |
|---|---|
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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):
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):
If the preschooler only travels with the use of a sighted guide there will be little opportunity for environmental exploration (p. 434):
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):
Learned helplessness occurs when much of the preschooler's life is controlled by others, leading to passivity and lack of purposeful movement (p. 435):
Like children with little or no vision, children with some usable vision can also benefit from early use of the cane (p. 435):
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:
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.
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.
However, other perspectives may seem less harsh and judgmental.
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:
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.
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."
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.
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.
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."
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.
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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:
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.
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!
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!
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/
Resources for Teachers of the Visually Impaired
http://www.nbp.org
Contact: 800-548-7323
[email protected]
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.
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.
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 [email protected].
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.
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.
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!
American Action Fund for Blind Children and Adults
Contact: Patti Chang, [email protected]
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!
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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