Future Reflections

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.

Volume 29 Number 3                             Summer 2010

Deborah Kent Stein, Editor


  

ISSN-0883-3419

Copyright © 2010 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
www.nfb.org/nopbc • nfb@nfb.org • dkent5817@worldnet.att.net

 

CONTENTS

Volume 29 Number 3                                     Summer 2010

 

FEATURE

Analyzing and Selecting Children’s Picture Books That Feature Blind Characters
by Barbara Cheadle

SCHOOL

Equal Standards for Blind Children
by Matthew Maurer, PhD       
           
Jitters and Butterflies: Helping Your Child Deal with Anxiety about School
by Natacha V. Beim               

Kendra K. Holloway: First Grader
by Stephanie Kieszak-Holloway        

BRAILLE

Sight Unseen
by Mashawna Thompson
           
Maegan’s Story
by Denise M. Robinson, TVI, PhD

Braille: Unlocking the Code
by Sheila Amato, Ed.D.

MUSIC

The Comprehensive Music Program for Young People at Lighthouse International
by Dalia M. Sakas, D.M.A.    

Blowing My Own Horn
by Gordon Kent

Step to the Music
by Kayleigh Joyner     

All Things Possible
by Crystal Morales

PEOPLE SKILLS

Navigating the Social Landscape: Strategies For Success
by Arielle Silverman  

Collaborations and Connections
An Interview with Brett Page 
           
MEETING CHALLENGES

Friends Make All the Difference
by David Thomas

A Walk Across the Stage
by Doreen Franklin, Susan Harper, and Carol Castellano

Have Cane, Will Travel? Halfway Around the World!
by Amy Mason                       

REVIEW

My Fair Child
by Maureen Ryan Esposito
Reviewed by Connie J. Davis

NOPBC UPDATES

Leading the Way: The 2009-2010 Braille Readers Are Leaders Contest
by Natalie Shaheen

New NOPBC Board Elected
by Laura Weber

News From Florida
by Lenora Marten

Report From Texas
by Laura Weber

Announcements

Odds and Ends

 

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ANALYZING AND SELECTING CHILDREN'S PICTURE BOOKS THAT FEATURE BLIND CHARACTERS

by Barbara Cheadle

From the Editor: As most readers know, Barbara Cheadle founded Future Reflections and served as its editor for twenty-eight years. She was also the founding president of the National Organization of Parents of Blind Children (NOPBC). Today Barbara is preparing to launch a brand-new career as a children's librarian. The following article is based on a paper she wrote for one of her classes on library science.

Going deeper than history, the myths and feelings of a people are enshrined in its literature.
--Kenneth Jernigan, July 3, 1975

Librarians who subscribe to this sentiment take seriously the task of evaluating children's books for false and inappropriate depictions of gender roles and people of color. To assist in that endeavor, the Council for Interracial Books published guidelines in 1980 that were modified and shortened in 1994. The abbreviated list, called "10 Quick Ways to Analyze Children's Books for Racism and Sexism," is widely circulated as an evaluation tool and a resource to stimulate thought and discussion.

People of color, girls, and women are not the only classes that have historically been ignored or grossly misrepresented in literature. How do we evaluate children's literature to prevent the perpetuation of myths and negative attitudes about blindness? What standards or guidelines can we use?

Sets of Guidelines

In his 1975 speech "Is Literature against Us?", Dr. Jernigan identified nine motifs about blindness that permeated literature up to that time. These themes embody common stereotypes about blindness that linger in our society in many forms. Blindness is represented as compensatory or miraculous power, as total tragedy, as foolishness and helplessness, as unrelieved wickedness, as perfect virtue, as punishment for sin, as abnormality or dehumanization, as purification, and as symbol or parable.

Two other resources provide useful material as well. In 2002 the Circle of Inclusion Project at the University of Kansas adapted the 1980 guidelines for selecting bias-free storybooks from the Council on Interracial Books for Children. The new adapted guide was called "Nine Ways to Evaluate Children's Books that Address Disability as Part of Diversity." The paper makes the following nine recommendations:

1. Check the illustrations. Look for stereotypes and tokenism, and look at who's doing what.
2. Check the storyline. Look at standards for success; look at how problems are presented, conceived, and resolved. (Is the disability or the person with the disability the “problem?”)
3. Look at the lifestyles.
4. Weigh the relationships between people.
5. Consider the effects on a child's self-image.
6. Consider the author's or illustrator's background.
7. Check out the author's perspective.
8. Watch for loaded words.
9. Look at the copyright date as an indicator of dated language.

The third resource is the set of criteria used for the Schneider Family Books Award. Inaugurated in 2004, this award is given by the American Library Association “to honor an author or illustrator for a book that embodies an artistic expression of the disability experience for child and adolescent audiences." Four of the six content criteria specifically address the issue of disability. Those four are:

1. Must portray the emotional, mental, or physical disability as part of a full life, not as something to be pitied or overcome.
2. Representation of characters with disabilities should be realistic, avoiding exaggeration or stereotypes.
3. Persons with disability should be integral to the presentation, not merely passive bystanders.
4. Information on a disability must be accurate.

Evaluating Books with Blind Characters

I utilized these three sets of guidelines to evaluate the following children's storybooks, each featuring a blind character. I decided to examine the books in groups to get a better perspective about each title. Nuances and distinctions show up better when books are examined in contrast with each other.

I also had to consider how to approach judging the accuracy of the blindness-specific information (criterion number 4, Schneider Family Award). As the mother of a blind child and director of children's services for the American Action Fund for Blind Children and Adults, such assessment is not a problem for me, but it might be a challenge for the average librarian. There are three ways in which a reviewer can overcome the knowledge barrier without doing excessive research. First, reviewers should check biographical information about the author and/or illustrator. Is either of them blind or visually impaired? Has either of them had a relationship with someone who is blind (sibling, teacher, aunt, student, etc.)? Second, check to see if the author and/or illustrator provide notes, cite sources, or thank blindness organizations for assisting with the research for the book. Third, many excellent, authoritative Websites of organizations are easily available for quick perusal. I recommend the National Federation of the Blind <www.nfb.org> as a resource.

Reviews

I begin my reviews with the books to which I reacted most strongly. One sparked a positive reaction, and one a negative response. I close with the two books about which I felt the greatest ambivalence.

The first book, Seven Blind Mice (1992), reworks the Indian fable about seven blind beggars and an elephant. In the original tale each beggar touches a different part of the elephant. Then they argue about what an elephant looks like, based upon each one's limited experience. It plays into the blindness stereotype Jernigan describes as "foolishness." The blind beggars are devoid of common sense. They cannot draw conclusions from the facts they collectively have gathered.

Initially I read this story with skepticism, but I was delightfully surprised. The blind mice are portrayed as curious, active, and courageous. One by one they set out to discover what has moved into the pond nearby. As in the original fable, each of the first six mice explores one part of the elephant. The mice begin to argue about what it is--a fan? (the ears), a snake? (the trunk). The seventh and last mouse solves the mystery. She explores every part of the creature and comes back to tell the others that it is an elephant. Because the seventh mouse is also blind, her solution puts the failure of the others into perspective. They do not fail due to their lack of sight, but because they are not thorough and systematic.

The only way in which the author/illustrator falls into stereotypical thinking is in the portrayal of the eyes of the mice. All are large white dots (gray for the white mouse) with no pupils. However, since the mice are portrayed in distinctively unmouselike colors of red, purple, blue, green, yellow, and orange (the seventh mouse is white), this is a minor issue. (Distorted eyes, closed eyelids, and sunglasses are common stereotyped images used by illustrators who feel compelled to indicate to the viewer that a character is blind.)

So, how does this book stack up? Very well, indeed. We have a possible (but minor) stereotype in the illustration that might not even have been deliberate, and a proactive blind (female) hero who solves a problem that is not related to blindness.

Published in 1999, The Doll on the Top Shelf provides an unfortunate contrast. Three plain, unwanted toys (a doll, a clown, and a pig) are relegated to the top shelf in Mr. Carenot's toy shop, but they don't give up hope. Late on Christmas Eve, a grandmother and a small child enter the shop. The grandmother, explaining that she doesn't have much money, wants to know if Mr. Carenot has a doll for sale. She asks if he will let her granddaughter hold the doll, "since she is blind." Wanting desperately to belong to someone, the plain doll rolls off the shelf and lands at their feet. What happens next is predictable: girl holds doll, grandmother buys doll, shopkeeper wraps doll, and when the grandmother and child get home they discover that Mr. Carenot wrapped up the doll's friends with her.

From the storyline alone, we see a passive blind character whose only role is to soften Mr. Carenot's heart. She demonstrates the spirit of Christmas by her ability to love and see the true worth of the plain doll. The illustration of the girl portrays her with wide-open, beautiful blue eyes--a sure gimmick for wringing pity from the reader. And who's the active hero of the story? The inanimate doll who contrives to get herself noticed and purchased. The blind girl fits three of the nine stereotypes described by Jernigan: blindness as virtue, purification, and symbol. The most positive, realistic depiction of her disability is the description of how she gently touches and smoothes the wrinkles from the doll's dress.

In the next two books--Brian's Bird (2000) and Keep Your Ear on the Ball (2007)--reviewers hit the jackpot with a rich mine of biographical information about the authors. Both books are written by teachers who base their blind characters on former students. The main characters are boys about eight years old. Both are multifaceted characters with problems to solve that require wrestling with significant relationships: Davey with his classmates and Brian (who is African-American) with his older brother.

The illustrator of Keep Your Ear on the Ball gives credit and thanks to a teacher and students at a school for the blind, so we can assume that she did research to enhance the accuracy of her illustrations. We do not have any information about the illustrator of Brian's Bird, although I found his illustrations nuanced and accurate. Both illustrators depict the characters without any stereotyped conventions.

Although it is not Davey but his classmates who solve the problem in the storyline, the classmates are inspired to do so because they have observed Davey's independence and competency in the classroom and lunchroom. They want Davey to play competitively on the playground. In Brian's Bird, Brian gets a parakeet for his birthday. He almost loses his pet because of his older brother's carelessness. Brian figures out a solution, and in the process discovers that his brother isn't so bad.

Both books get a thumbs-up. Brian's Bird might edge out Keep Your Ear on the Ball since blindness is not a part of the problem to be resolved, and the book also presents a strong, positive image of an African-American family. On the other hand, Davey's friendships with sighted classmates are a plus.

The next three books are also written by people who can claim some authority on the subject and provide relevant perspective. The Night Search (1997) and The View from Under the Pew (2008) are both written by blind women, and both authors are dog guide users. The Secret Code (1998) is written by a woman who grew up with a blind brother. In all three stories the focus is on blindness-specific skills: the use of canes, dogs, and sighted human guide for travel, and the use of Braille for reading.

The Secret Code by Dana Meachen Rau is an early or easy reader from Scholastic's Rookie Reader series. The author learned to read her brother's Braille books with her eyes, and envied his capacity to read in the dark with his fingers. The illustrator made special trips to research Braille books. The blind character, Oscar, goes to a regular school, reads Braille, and goes to art class and the library with the other kids. He takes the initiative to teach the Braille alphabet to his sighted classmate, Lucy, so they can write notes to each other in the "secret code." In the bright, cheerful watercolor-with-ink illustrations, Oscar is depicted in every way as a normal child. His eyes are the same black dots used in the illustrations of his classmates. Although it's not much of an action plot, the intrigue of learning a "secret code," a Braille alphabet chart with print letters and print dots, and the simple but accurate explanation of Braille should capture the reader's interest.

The Night Search (1997) has an engaging plot and a plucky character--Heather--who successfully resolves the problem presented in the storyline. Readers learn that Heather is blind in the opening conversation between her and her parents. They also learn that blind kids can go camping, that children don't use guide dogs, and that guide dogs must be mature and trained--pet puppies don't cut it.

The illustrations are accurate, realistic pencil sketches. Heather's adventure--or misadventure--begins when her puppy wakes her as she sleeps on her camp cot in the middle of a rainy night. Heather decides to go to the bathroom, too, when she takes him out. Ignoring her parents' earlier instructions, she leaves her cane behind and is soon lost. She gets herself out of her predicament when she finds a stick on the path and uses it as a cane. With it she rescues her puppy who had slipped away from her, and gets back to their cabin with only a few scrapes and wet, muddy shoes. It's the kind of life-lesson we might expect any child her age to experience. Heather is a well-rounded character and there is nothing pitiable, extraordinary, or stereotypical about her.

We have no background about the illustrator of The Night Search, but excellent information about the author, Kate Chamberlin, is provided on the back cover. She is a blind guide dog user who makes her living as a newspaper columnist and freelance writer.

The author of The View from Under the Pew, Diane Winters Johnson, is also blind and travels with a guide dog. Margaret Freed, the illustrator, is a professional artist. Freed offers well-designed, full-color illustrations that allow the book to stand alone as a picture story. The text and storyline are accurate in their depiction of blindness. But alas, the story is dull. There is no action to engage the reader. As the title suggests, the story is told from the perspective of the guide dog, Walter, whose mistress is a blind pastor. Even that appeal is not enough to sustain interest. The child listening to the story will be tempted, like Walter, to curl up and fall asleep.

One of the next two books has a character who is not really blind, and the other has a character we don't realize is blind until well into the story. The first book, Ben's Glasses (1996), addresses blindness and visual impairment in ways that perpetuate damaging stereotypes. Ben decides that his glasses make him look "goofy." He goes to school without them on the day class pictures are scheduled to be taken. Ben is not legally blind, but without his glasses he is severely visually impaired. He promptly turns into the stereotype described by Jernigan as "helplessness and foolishness." He bumps into a chair and apologizes to it. He mistakes a coatrack for a friend. He compliments a mop on her hair and wanders into the girls' bathroom. Finally, Ben's classmates convince him that it's okay for him to wear his glasses, and everything returns to normal.

Only one criterion need be applied in evaluating this book: how would it affect the self-image of a blind or visually impaired child whose vision is not improved by putting on glasses? In an attempt to teach that it's okay to wear glasses, the author has perpetuated stereotypes of blind people.

So far, there does not appear to be a correlation between publication date and suitable or unsuitable portrayals of blind characters. Published in 1994, two years before Ben's Glasses and four years before The Doll on the Top Shelf, Mandy Sue Day depicts a special day in the life of a girl of nine or ten. She lives on a farm with five brothers and sisters. All the children have been promised one day off during the harvest season, and this is her day to do as she pleases. What pleases her is to spend the day riding and racing her beloved horse, Ben, through the woods and fields.

Although there are subtle hints in the large, realistic watercolor illustrations and the poetic quality of the text, the reader may not realize until the concluding pages that Mandy Sue is blind. Her blindness is only stated when her little brother offers her a flashlight to take with her to the stable. Mandy Sue matter-of-factly reminds him that she is blind, while their dad gently chuckles. The author has made no effort to hide this fact; she simply waits for it to come up naturally. If readers go back to the text and the illustrations they will see Mandy's "fingers ticking off the fence posts. Twenty-four to the barn." And they will note that Mandy Sue's observations about Ben and the world around her are rich with sounds, smells, and touch--"crunching leaves," "whiffs of wood smoke and Concord grapes," while sights are absent. The language is so descriptive and the illustrations are so satisfying that we don't notice this the first time around.

The author has managed to portray a fully satisfying world, rich with experiences and sensations, from the perspective of a blind character. The reader is not even aware that he/she has stepped into Mandy Sue's shoes. It is pleasing to engage with a character without any presumptions about what she can or cannot do based upon a disability. This book is a definite keeper!

The last two books have the earliest publication dates and were the most difficult for me to evaluate. The Seeing Stick was published in 1977 and Knots on a Counting Rope appeared in 1987. Both books are set outside the prevailing culture of the United States. The characters in Knots are contemporary Native Americans. The Seeing Stick is a literary folktale set in ancient China. The blind character in Knots, Boy-Strength-of-Blue-Horses, is a little boy around age six, and the blind character in The Seeing Stick, Princess Hwei Ming, is about the same age. Both characters have elderly mentors--a grandfather for Boy and an "old man" (who also turns out to be blind) for the princess. The challenge for both characters is to learn to face blindness with courage and strength, and to find ways to participate in the world without vision.

In Knots, Boy's grandfather tells him the stories of his birth and how he gets and names his horse, Rainbow. Every time he tells a story he ties a knot in a rope to help Boy remember. Boy is faced with a problem when he must decide whether to participate in a tribal horse race with the other boys. Recalling how his grandfather helped him memorize the trail, he faces the challenge and participates. He doesn't win, but he acquits himself well in the race and the whole tribe is proud of him. So far, so good. The problem comes with the repeated use of "darkness" symbolism, which leads to the use of several loaded phrases: crossing "dark mountains," being born with a "dark curtain" before the eyes, and "living with darkness." More problematic is that we never see Boy fully develop as a character. He has potential--he fears the race, but he gathers his courage and participates anyway. He goes out with the sheep (so we are told, it isn't illustrated) just like the other boys. But grandfather overshadows him. Even in the illustrations before and after the race, when other boys and tribal members are in the scene, there seems to be an invisible circle around Boy and his grandfather, separating Boy physically from others. In all other ways, the illustrations portray Boy naturally and without stereotyping.

The Seeing Stick is a modern folktale created by Jane Yolen. The text has some mystical qualities, but the illustrations are mostly responsible for the strong, dreamlike, mystical impression created by the book. This is unfortunate and distracts considerably from a storyline that, with a different illustrator and style, could leave a much less stereotyped impression of blindness. It would take great skill to craft the text and plan the illustrations for such a tale to keep it from turning blindness into a symbol or parable. When I read the story the second and third time and ignored the illustrations as best I could, I was much happier.

The Emperor offers wealth to anyone who can give sight to his daughter, who is blind from birth. All fail, and the Princess is sad because she is blind. Finally, a ragged old man appears at court with a "seeing stick" on which he carves amazing likenesses to illustrate fabulous tales of his journeys. In that process, the text hints of his blindness. The illustrators portray it by showing him with closed eyelids.

In showing the Princess the "seeing stick," the old blind man teaches her to use her fingers to touch and "see" the world around her. She is happy, and insists upon touching everyone and everything she can literally get her hands on in the kingdom. She and the old man go on to teach the other blind children in the city how to "see" as well.

Like Boy, the Princess is not fully developed as a character, but I feel more hope and anticipation for her than I do for Boy. The limitations imposed upon her by those who did not understand her need to touch would make anyone sad. She also reaches out to children her age at the end of the story, but Boy remains isolated from other children. I would love to see this story reissued with new illustrations that give more individuality and character to the Princess and the old man. I would love to see pictures with a strong tactile quality to reinforce the story's message about the importance and viability of touch as a way of knowing and finding pleasure in the world.

Conclusions

I believe that the criteria from the three sources worked quite well in my evaluations of these books. Some categories were tapped more frequently than others, and some seemed not to apply at all (I don't believe I ever mentioned lifestyle, for example; and none of the characters displayed the evil, wicked, sinful, or complete tragedy stereotypes). However, the books evaluated for this paper do not contain the whole universe of possibilities, so I would be reluctant to edit out any of the criteria based on this exercise alone. By far the most important criterion is the development of the blind character. If the character is multidimensional and demonstrates a wide range of human characteristics, then it will likely meet most of the other criteria.

To combat stereotypes it takes more than vigilance in evaluating books to keep out the negative and inaccurate. It takes a proactive stance in seeking out a wide variety of books to provide a balanced view and prevent stereotypes based upon limited exposure. If the books in the collection are not sufficient to show diversity in the depictions of relationships and lifestyles, as well as diversity in ages, gender, and culture, then stereotypes can continue to be perpetuated. They are perpetuated through absence of good models as surely as through the presence of poor or stereotyped models. In short, there should be a viable blind character anywhere and everywhere other literary characters tread in children's storybooks.

WORKS CITED

Chamberlin, Kate. 1997. The Night Search. Hollidaysburg, PA: Jason and Nordic, ISBN: 0944727328

Davis, Patricia Anne. 2000. Brian's Bird. Walnut Creek, CA: Shens Books, ISBN 0807508810

Johnson, David. 1996. Ben's Glasses. New York: Grosset and Dunlap, ISBN 0448412853

Johnson, Diane Winters. 2008. The View from under the Pew. Nashville, TN: Abingdon Press, ISBN 068764478X

Karim, Roberta. 2003. Mandy Sue Day. New York: Sandpiper, ISBN 0618316752

Martin, Bill. 1997. Knots on a Counting Rope. New York: Henry Holt, ISBN 0805054790

Petrillo, Genevieve. 2009. Keep Your Ear on the Ball. Gardiner, ME: Tilbury House, ISBN 088448324X

Rau, Dana Meachen. 1998. The Secret Code. Danbury, CT: Children's Press, ISBN 0516263625

Turk, Ruth. 1999. The Doll on the Top Shelf. Walnut Creek, CA: Shens Books, ISBN 1891992023

Yolen, Jane. 1977. The Seeing Stick. New York: Crowell, ISBN 0690004559

Young, Ed. 2002. Seven Blind Mice. New York: Putnam Juvenile, ISBN 0698118952

 

EQUAL STANDARDS FOR BLIND CHILDREN

by Matthew Maurer, PhD

From the Editor: Dr. Matt Maurer teaches instructional technology at Butler University in Indianapolis, Indiana. The brother of NFB President Marc Maurer, he has a longstanding commitment to improving educational opportunities for blind students.

We say we are as good as the sighted, able to compete with them on terms of equality. We say that we deserve all of the privileges and responsibilities of citizenship, and that we are capable of exercising them. We say that it is respectable to be blind. When the time comes that a majority of us know for a certainty within ourselves that these things are true (know it so surely that we act and live it every day and do not even need to think about it or question it), our battle will largely be won.
--Kenneth Jernigan, July 4, 1985

The words of Dr. Jernigan often give us inspiration and direction. The field of education has much to learn from the ideas he offered at the 1985 convention of the National Federation of the Blind. Among the many goals we should hold for the education of blind children is that they learn to see themselves as respectable, able to compete, and deserving of the rights and privileges of citizenship. Educators should instill these beliefs to the point that blind students do not need to think about them or call them to question.

We need to ensure that our children are treated in ways that foster this outcome. We need to guard against policies and behaviors that might put it in jeopardy. Unless parents are vigilant, the outcome we desire can be endangered by an insidious pattern of accommodation.

The granting of "extra time" is one of the most common accommodations that is placed on a blind child's IEP. Many blind children are allowed extra time to take tests, to complete assignments, and to get from place to place. This accommodation is so frequent, in fact, that it often becomes part of the IEP "boilerplate." Before this accommodation is added to a child's IEP, however, parents and teachers should ask some serious questions. Does the child really need more time? If so, why is this the case? Is the child being offered extra time to take tests because his reading speed is low and his work habits are poor? Does a child need extra time to get to class because she has poor travel skills? Does a blind child need extra time because he/she lacks confidence in his/her ability to complete a task? Accommodations given for these reasons are ultimately harmful to the child. If a child has a low reading speed, poor work habits, or limited travel skills, these problems should be addressed directly in the IEP. We must look for ways to build a child's confidence instead of reinforcing shaky self-esteem.

The lighter workload is another accommodation commonly found in the IEPs of blind students. If the rest of the class is assigned to do twenty problems, the blind child may be assigned only ten. If the class must write a ten-page paper, the blind child may be asked to write a shorter one. Again, we must ask ourselves if this accommodation is necessary, or if it is simply the short-term solution to a deeper learning problem. Does the child need to work on writing speed? Do the teachers need to focus on his/her work habits? Perhaps a lightened workload may be appropriate for a while, but perhaps it is not. Certainly it is not appropriate to consider a slow writing speed or poor work habits to be inevitable for a blind child. If a blind child cannot do the same amount of work as sighted peers, less work may be appropriate while he/she is developing better skills, but it is not appropriate as an ongoing accommodation. The IEP must focus on improving the child's skills so the accommodations can be removed. To do otherwise is to send a lasting message that the child is not as good as his or her sighted peers. This message is potentially very detrimental to the child. Guarding against it must be a primary focus for everyone who cares about the child's education.

The purpose of education is to prepare our children to go into the world as active, engaged members of society. How do accommodations such as extra time and lighter workload serve that purpose? What employer will be interested in hiring a worker whose habits are poor and whose production is low? If slower speed and lower work output are school standards, is it any wonder that the unemployment rate for blind adults is so dismal?

Parents must also watch carefully the assessment of their child's work. Is poor work being judged as acceptable? Is mediocre work being judged as exceptional? Teachers may not make these inaccurate judgments at a conscious level. If a teacher is unfamiliar with blindness, he/she may find the most routine performance from a blind person to be remarkable. Such a false picture may have an impact when the teacher assesses the child's work.

Dealing with issues around accommodation can be difficult because parents are often forced to act against their child's wishes. Just as children tend to resist eating vegetables, they generally oppose doing homework. What child wouldn't prefer a lighter assignment? What child fights to receive a low grade when he/she turned in shoddy work? Parents often must take on the unpleasant duty of watching out for their children's long-term best interest. Parents must insist that blind children are held to the same standards as their sighted classmates. When a child cannot meet these standards, parents must insist that the educational program focus on the reasons why he/she is not more capable. Those reasons should be eliminated as quickly and thoroughly as possible.

As parents work through these tasks, they must help the blind child understand why the easier path is not always the best one. As Dr. Jernigan explains, "We could be grateful for whatever we get and accept the stereotype--but the price is too high. Such conduct translates into exclusion from employment, custodial treatment, and second-class status; and it also blights the spirit and shrivels the soul--for whatever we live and believe, that we surely become."

It is a rare child who welcomes more work or lower grades, no matter how much parents insist that they are teaching a lesson on freedom and equality. Nevertheless, parents must persevere. Parents must persist, not only for their own children, but for other children to come. Dr. Jernigan gives us powerful insight when he says, "What the blind believe about themselves, they teach to the public; and what the public believes conditions the blind. Not only individuals, but also organizations may have negative impact and mistaken attitudes."

When we insist on equal standards and teach our children why such standards are important, we begin to break the cycle Dr. Jernigan warns about. We lessen the negative impact and mistaken attitudes of teachers and schools. It is a tall order, but our effort means the freedom of our children and the freedom of the children of future generations.

 

JITTERS AND BUTTERFLIES: HELPING YOUR CHILD DEAL WITH ANXIETY ABOUT SCHOOL

by Natacha V. Beim

From the Editor: The beginning of a new school year can be an exciting and joyful time. It can also bring a host of worries for young children. This article notes signs of anxiety in children and suggests steps that parents can take to help kids past some of the rough spots. Natacha V. Beim is a writer, speaker, and teacher. She is the founder of Core Education and Fine Arts Junior Kindergarten Schools.

You spent months insuring that everything was in place for that all-important first day of school. You met with the new classroom teacher and the TVI, and you made sure that your child's Braille books and assistive technology were ordered on time. You took your child to visit the new building so she could start to learn the layout. Yet, despite your best efforts, your child seems to dread going to school every day.

Anxiety about school affects many children, blind and sighted. In addition to all the ordinary stresses of childhood, blind and visually impaired children may face some unique challenges that heighten the pressure. Unless anxiety is addressed, it can have a negative impact on a child's attitude toward learning and socializing. Here are some signs that your child may need a hand adjusting at school.

Your child seems tired or lethargic.
When you tell him it's time to get ready for school, there is no sense of eager anticipation. At the end of the day your child goes through the motions, doing whatever needs to be done, but has energy for little else.
Your child seems unhappy or just "okay."
You remember that she used to laugh more, and notice that now she doesn't have much to say about the day's activities.
Your child complains of stomachaches, shortness of breath, headaches, or dizziness.

If these signs seem familiar to you, you probably need to take action. Here are five ways to help your child adjust at school. 

1. Talk about the issue.
Before you make assumptions about what is going on, talk to your child. Ask her if she likes her teachers. Has she been making new friends? What classes does she like? Is there anything she wants to share with you? Don't stop there. Talk with the teacher and visit the school to observe how your child is getting along.

2. Involve your child in finding a solution.
Once you have identified the issues that are causing your child's fear or stress, develop a plan together. Involving your child will give him a sense of empowerment and help him develop problem-solving skills. Review the situation every week or so and work with him on the next steps.

3. Seek assistance.
Your child may benefit from additional help. Meet with the school counselor, your child's teacher, and/or the school principal. Talk about what your child is experiencing. Discuss what can be done to help your child feel more comfortable in the classroom environment. Is there too much noise and confusion? Is the teacher taking time to describe the pictures in books? Can the teacher give more verbal description during visual activities or allow your child to touch objects related to the lesson? Feeling excluded from classroom life can be very frustrating for a blind or visually impaired child, and can become demoralizing over time. You should leave the meeting with a solid action plan. Set a date to meet again and evaluate.

4. Sit with your child when he does homework.
By setting aside a time to work on homework together, you can connect with your child every day and find out how she is doing academically and socially. You will also have the opportunity to teach your child self-discipline and organization. Having this regular time together will help your child feel supported, loved, and understood.

5. Make a point of inviting other children over more often.
Socialization is important for all children, and it is an area where blind children sometimes run into difficulty. Making friends builds confidence and can help your child cope with the negative attitudes she may encounter. Strong friendships with classmates will help your child enjoy and succeed at school. Help your child set up play dates so she can share her world with her friends. Make these into special times by preparing a favorite snack or playing a game with the kids.

Take the time to listen attentively and empathically to your child's concerns. Don't be too quick to dismiss his fears with statements such as, "I'm sure he likes you," or "It can't be that bad." Recognize the issues and teach your child to deal with them effectively.

 

KENDRA K. HOLLOWAY: FIRST GRADER

by Stephanie Kieszak-Holloway

From the Editor: Stephanie Kieszak-Holloway serves as president of the Georgia Parents of Blind Children (GPBC). She is a frequent contributor to Future Reflections, and readers have been following the story of her daughter, Kendra, for several years. Here is the newest installment of Kendra's adventures.

Some of you may be familiar with the Junie B. Jones series by Barbara Park. In Junie B., First Grader (at last!), the main character joins a new class where she has a new teacher, new friends, and new adventures. My daughter, Kendra, had a similar experience when she enrolled in a new elementary school.

The move from kindergarten to first grade is a big step for many children. It can be a scary time of changes and transitions, yet it can also be an incredibly exciting experience. I would like to share some of the things that worked well in my daughter's class and to point out some of the things that didn't work out so well. I hope our story will help teachers and parents plan together for a first-grade year that is both exciting and productive.

Kendra attended pre-kindergarten and kindergarten at a school that served children with disabilities and typical children in integrated, co-taught classrooms. When it came time to choose an elementary school, we knew we wanted to find one that followed a similar model. Kendra's first-grade class was co-taught by a general education teacher and a special education teacher. In addition, a paraprofessional was always in the room. We had stressed at the IEP meeting that we did not want Kendra to have a one-on-one aide. The para's top priorities were to help emboss Kendra's work on the classroom embosser, to assist Kendra with transitions from one activity to another, and to provide her with verbal descriptions or assistance as needed. However, she was also available to help the other children in the class.

Preparing the Physical Environment

Much of the preparation for Kendra's first-grade year took place while she was still in kindergarten. Once the IEP team agreed upon Kendra's placement, her TVI, Dr. Laurie Hudson, met with the first-grade teachers to share information and order textbooks. In addition, I provided the teachers with a binder of information and resources. Once a week in the spring prior to her enrollment, Kendra visited the new school for an orientation and mobility lesson. This was an excellent way for her to learn the layout of the school. It also gave her an opportunity to meet many of the teachers and several students as she and her O&M instructor explored the halls. Familiarity with the building and the teachers helped reduce some of the anxiety associated with starting at a new school.

One of the first-grade teachers already knew uncontracted Braille, and she expressed an interest in having Kendra in her class the following year. During the summer preceding first grade, that teacher placed Braille labels in several locations in the classroom. She also purchased some adapted materials so they would be available as soon as school started.

The classroom contained all of the equipment Kendra needed. She used a Perkins Brailler and a BrailleNote in class. A Tiger Embosser and laser printer were available to produce her homework assignments in Braille and to print out her work in print for the teachers to grade. By the end of the school year, Kendra could plug her BrailleNote into the printer and print her assignments by herself with only occasional verbal prompting. A Cranmer abacus, Braille ruler, and Braille clock were available for math lessons. She also used various manipulatives such as the Wheatley Picture Maker, a Velcro-based product from the American Printing House for the Blind. Each volume of her Braille textbooks and workbooks was labeled by volume number, Braille pages, and print pages along the spine. The books were stored in an empty classroom until a particular volume was needed. Since dozens of Braille volumes were equivalent to some of the single-volume print books, we faced the challenge of making sure the correct volume came home for the day's homework assignment.

Although several students with low vision had attended the school, Kendra was the school's first totally blind student. We knew there was going to be a bit of a learning curve involved as we educated people and acquired materials. The school library, for example, did not have any Braille books at the start of the year. I volunteered to loan the school some books from our own collection and provided information about borrowing books at no charge from the Georgia Library for Accessible Services (GLASS). After sitting in on part of Kendra's IEP meeting at the start of the year, the school principal authorized the purchase of additional Braille library books. Twice a year, the school holds a Book Fair where the students can choose and purchase their own books. Kendra's teacher ordered a few Braille books so Kendra and some of the sighted students who were interested in Braille would have some on the shelf to choose from as well.

Before school began, a paper sign with the room number in Braille was added next to the doorway of each classroom. As one might imagine, those signs did not hold up well in a busy elementary school. The school has plans to add permanent Braille numbers, at Kendra's height, to all of the rooms.

Extracurricular Activities and Field Trips

During the course of the year, the first-grade classes went on several field trips. In the first semester the class attended a musical, Junie B. Jones, at the Fox Theater in Atlanta. An audio describer, trained by an organization called Arts for All, was available to Kendra through a system with earphones. The Fox Theater employs a full-time staff member as Director of Patrons with Special Needs. Kendra's special-education teacher contacted that person in advance to arrange for the audio description. Having that service made a huge difference in Kendra's enjoyment of the performance. The class also went to the planetarium at the Fernbank Science Center to see a show about the sun. The paraprofessional gave Kendra a verbal description of the show. In addition, the Fernbank Science Center provided a few "in-house" field trips on topics such as primates and snakes.

Kendra has always been very involved in extracurricular activities. As a first grader, she participated in swim lessons, dance classes, Brownie Girl Scouts, yoga lessons, an after-school program for blind and visually impaired children, and a chess club. For chess the biggest adaptation we needed to make was to purchase a tactile chess board and pieces. Kendra has already told us she would like to join the computer club next year.

Friendships and Peer Assistance

Kendra's birthday falls in September, at the start of the school year. In the past, we have always invited the entire class to her birthday party as a way to break the ice for students and parents. In first grade, Kendra decided she would rather have a smaller party with just a few girlfriends. We arranged for a yoga instructor to come to the house and lead the girls in a class. They loved it, and I loved knowing that Kendra was old enough to choose good friends and to select an activity she enjoyed. We still make an effort to schedule play dates with her friends so that they have a chance to socialize outside of school hours.

Kendra's TVI is a strong proponent of independence in her students. Sighted children and adults are inclined to be overly helpful to a blind student. To guard against this tendency, Dr. Hudson taught five rules of orientation and mobility to Kendra's classmates. Once a student mastered these rules, he/she was considered a "certified guide." Certified guides could provide assistance as needed in the halls and classroom and on the playground. The rules included proper etiquette such as using two names when speaking ("Hi, it's ..."), and having the blind person hold the arm of the guide rather than being pulled along. These rules were posted on the classroom wall. Having "certified guides" was one of those things that worked better in theory than in reality. The truth is that few of Kendra's peers learned to be reliable guides. Even after a year, Kendra was still shaky on her mental map of the classroom. She used her cane in the hallways and to travel to and from the playground, but she did not use it in the classroom.

Braille for Everyone!

If I had to point to one thing that made the first-grade experience a success, it would be the involvement of the entire class, teachers as well as students, in learning Braille. Every child in the class was exposed to Braille. Some learned it so well that they became "certified Braillers." A certified Brailler was allowed to:

1.         Take spelling tests in Braille
2.         Help other students with Braille
3.         Transcribe Braille for the class
4.         Write notes in Braille

Prior to the start of the school year, only the special-education teacher had knowledge of uncontracted Braille. By the end of the year, the special-education teacher was working on learning whole-word contractions, the general-education teacher was learning numerals 0 through 9 so she could find page numbers, and the para was learning to use a chart to write uncontracted Braille. The students were taught that Braille could be fun. For example, the teacher might say, "Everyone whose name begins with dots 1-3-4 line up at the door." I observed the class on a few occasions and there were always children vying to use the Perkins Brailler.

Having sighted friends who can read and write Braille means a great deal to Kendra. She has written stories and essays about her friends and about how they are such good Braille writers (her words). At a play date at our house, I heard Kendra and her friend laughing hysterically in Kendra's room. The two of them were collaboratively using the BrailleNote to write a nonsense story. Even if nothing else had gone right in first grade, that moment would have made the year a success.

Kendra's class celebrated Louis Braille's birthday with a party. They had a cake with the words "Happy Birthday" written in Braille with icing. The students made a snack called "Braille and Print Party Mix." Here's the recipe:

2 cups pretzel sticks
1 cup Alpha Bits Cereal
1 cup Dots candy
1 cup cheese crackers

Blend together. The pretzels represent pencils or styluses, the cereal represents print letters, the candy represents Braille dots, and the crackers represent paper.

The students also spread Graham crackers with frosting and used M&M’s to write their initials in the frosting. The teacher read the class a book about Louis Braille's life and Dr. Hudson prepared a poster about him for the celebration.

First Grade Recap

For the most part, Kendra's first-grade year was a very successful one. I saw a great deal of personal growth in Kendra in addition to her academic achievement. Prior to first grade, Kendra would never have sat through a performance at the theater or made it through a school assembly without crying over the noise. In first grade she did both. At the Career Day assembly Kendra was so interested in the para's verbal description that she asked to visit with the puppets after the show. The Young Audiences artist was very impressed by her interest and sent her home with a CD of the performance. Prior to first grade, Kendra lived on Ramen noodles and chicken nuggets. In first grade she started buying lunch in the school cafeteria, and I was astounded at the foods she was willing to try (turnip greens, anyone?). Before first grade, the thought of participating on a field trip would have had Kendra in tears. In first grade she not only participated in the Reading Roundup and Field Day, she actually enjoyed them.

We are still working out some issues with the school system, but we understand that education is a process. We've handled things as they've come up, always keeping in mind that there is a certain seven-year-old who is counting on her teachers and parents to make her educational experience the best it can be.

I would like to thank the 2009-2010 members of "Team Kendra," in alphabetical order: Dr. Laurel Hudson (TVI/O&M), Ms. Donica Johnson (general education teacher), Ms. Katrina Lowrey (TVI), Ms. Lynn Storck (paraprofessional), and Ms. Janel Stover (special education teacher).

 

SIGHT UNSEEN

by Mashawna Thompson

Reprinted with permission from Beyond Blonde, Issue 3, 2009-2010 and from TX SenseAbilities, Winter 2010 

From the Editor: Mashawna Thompson serves on the board of NOAH, the National Organization for Albinism and Hypopigmentation. She is certified as an education advocate for the Kansas State Department of Education and works part-time as a voice instructor.  She joined the NOPBC after she read a Future Reflections article on dual media by Marla Palmer.

Beginning this year, her first year of preschool, my daughter Lyra has been learning both print and Braille. This concept is known as "dual media." I must admit that when Lyra was a baby and we were still coming to terms with her albinism, the last thing I wanted to hear was that she might need Braille some day. Braille was for blind people, and my baby was not going to be blind! Nearly everything I heard assured me that Lyra's vision would be good enough for her to be a print reader; Braille would not be necessary. So how did I become such a strong supporter of the dual-media approach?

The concept of dual media was introduced to me by one of Lyra's teachers of the visually impaired (TVIs) when Lyra was receiving early intervention services. At this point I began to do my own research. I read dozens of articles and papers. I also talked to other parents of children with albinism and to adults living with the condition. I realized that there was not enough evidence to prove that Lyra would never need Braille. I became convinced that for some situations, at various times in the future, Braille might be her best option.

I learned that the use of Braille may prevent or reduce eyestrain, headaches, and neck and back problems caused by poor posture. With Braille, Lyra would not be dependent on certain lighting conditions, print size, or the availability of magnification devices. If she turned out to have trouble reading her own handwriting, she could use Braille for taking notes.

"I dream of being able to read a book myself, not as an audio book, and be able to read and read until I feel like stopping--not because I'm getting a headache or am tired of holding a magnifier or sitting in some strange position--but because I just want to stop," says Heather Kirkwood, an adult with albinism. The majority of people with albinism do not read Braille. Why is that? It may be that they truly don't need it. It could also be that they were never given the opportunity to learn Braille. "I would have benefited greatly from learning Braille as a young kid, but indeed wasn't even offered the opportunity until adulthood," Heather Kirkwood says. "[This is] an area where I feel the system let me down."

Traditionally, most children with albinism have been taught print exclusively. However, the fact that it's always been done this way doesn't mean that print-only is always the right decision. "In the past, teachers struggled over the decision to teach Braille to students who had the capacity to use print," report educators Koenig and Holbrook. "However, students who were inefficient in print reading and writing had no alternative other than to struggle with that inefficiency." (Koenig and Holbrook, 2000, p. 296)

Some adults with albinism say that they learned Braille but don't use it. When I hear this, I immediately want to dig deeper. I find it helpful to ask them a few more questions. At what age did they begin to learn Braille? How long did they receive Braille instruction? Did they learn contracted and/or uncontracted Braille? Did they learn to read Braille tactually? The answers to these questions make a big difference in whether a person who learned Braille will actually be able to use it effectively.

I know that there are many examples of people with albinism who excelled through school and went on to become very successful adults in a variety of career areas, but at what cost? Marleena Coulston, an adult with albinism, was introduced to Braille in seventh grade after her reading speed had begun to decline. At that point, she says, she was very resistant to Braille. "I most definitely have had to work harder than my peers, due to my eyes tiring from the heavy amounts of reading," she says. "Everything took twice as long for me to complete and do. Tests always took longer, my homework always took longer. ... I think that Braille would have made a difference. I think it's a good thing. I probably would have adjusted better if they had introduced Braille to me at an earlier age."

Past examples and trends do not prove that my child won't need Braille. Visual acuity in people with albinism varies widely. No one can predict with certainty whether or not Braille will be useful to Lyra in the future.

The purpose of having Lyra learn Braille isn't so she can get away with doing less work. I want her to do more than just get by. I want her to have the confidence and ability to reach her highest potential. Her ability to succeed should not be limited by her visual impairment. I want her to learn the value of hard work and at times even of struggle, not because of her vision, but because she is continually provided with a challenging curriculum. She needs to acquire the skills necessary to survive in the real world. She needs to know that she can't truly become successful by using her visual impairment as a crutch. I've stopped lowering my expectations and no longer focus on her limitations. I don't make excuses for her; I let her try something again and again. As John Stuart Mill once wrote, "The pupil who is never required to do what he cannot do, never does what he can do."

The decision we've made for Lyra has not come without criticism. Here are some of the arguments against Braille that we've heard.

You're trying to make her blind. Lyra is not totally blind, and I don't expect her to learn and rely on Braille alone. However, she is not totally sighted either. Why should she be expected to learn and rely on print only?

Lyra is a visual learner. This doesn't mean that her vision will always be the most efficient way for her to access information. If relying only on her vision for reading causes her to fall behind her peers and results in physical pain, why will she want to read at all? "The only books I have read for pleasure are books that I am extremely interested in reading," says Margaret Mary Campbell, an adult with albinism. "Had I learned Braille, I might have had more of a love for reading. I just looked at reading as a big chore."

Using Braille will make Lyra look blinder. In my opinion, holding a book or paper an inch away from her face would be much more noticeable and likely to make her appear blind. Using Braille will not make her look any more different than wearing headphones for audio materials, using a CCTV, or using a handheld magnification device. Children will always notice differences; it doesn't matter what the specific difference is. Basically, our approach is to be aware and look out for any social or emotional issues that might appear.

She will just read the dots visually. She will be resistant to learning Braille by touch. Children will often look for the easy way out; that doesn't mean we make learning something optional. If Lyra tries to read the dots visually, there are ways to help her break the habit. The teacher can put a piece of paper over her hand or place a partition of some sort between her eyes and her hands. An easier and even more effective solution could be for the teacher to require her to maintain correct posture when reading Braille. If a child is sitting up straight, not hunching over or bringing the paper up close, it is unlikely that he/she will be able to read the Braille dots visually. Learning Braille is only as hard as the teacher makes it. If the teacher believes that kids with low vision can't learn Braille, that attitude will affect the student's confidence and ultimately his/her success in learning.

It's unnecessary to learn Braille, with today's technology. Why bother when there are so many other options? Many alternatives to Braille are available today. These include low-tech and high-tech magnification devices, audio books, large print, and more. However, all of these options have limitations. Other than audio format, they all require vision. The issues of eyestrain and fatigue remain. None of the available options is as versatile as Braille. You can read Braille in bright light, low light, or even no light. Braille doesn't require a computer, an audio player, or even electricity. You can't assume that what works for one person will work for everyone. "I had a tough time adjusting to books on tape because my mind wandered," says Marleena Coulton. "I'm actually, ironically, a 'visual learner.'"

Chantel Alberhasky, the parent of a child with albinism, says, "It was once believed that technology would replace Braille for people with low vision, but just as technology cannot replace print, it cannot replace Braille." Technology has had a huge impact on the use of Braille, not by replacing it, but by making it more available. Through the power of technology and programs such as Bookshare and WebBraille, books in digital format can be downloaded from the Internet and embossed with a Braille printer for immediate access.

Whether or not to learn Braille should be Lyra's choice. Yes and no. Lyra is not yet old enough to understand the importance of becoming a good reader. Even if she becomes resistant to learning Braille when she is a little older, I will still require her to continue Braille instruction. I'm sure many students complain about learning to read print, but we never let them opt out of print reading simply because they don't like it. When Lyra is an adult I want her to be able to choose if, when, and where she wants to use Braille. In order for her truly to have that choice, her Braille reading must be proficient and fluent. She won't think Braille is useful or recognize its possibilities if all she ever learns is the Braille alphabet!

"My son is only finishing kindergarten, but he is learning Braille along with print," says Chris Kramer, the parent of a child with albinism. "I am giving him the tools to help him be as successful as he can be." Braille is a tool, just as a closed-circuit television (CCTV) is a tool. Neither can be used effectively without proper training. Instruction must begin very early, even before it's needed. When the child is older, he/she may or may not choose to use a CCTV or Braille, but at least he/she has the knowledge and skills to make a sound decision.

You're causing Lyra to be less independent. You're making her more disabled. According to Merriam-Webster, the definition of disable is "to make incapable or ineffective; especially: to deprive of physical, moral, or intellectual strength." In no way am I trying to make Lyra less capable or to weaken her ability to succeed. I'm doing the exact opposite. I don't want to limit her, I want to empower her.

"Don't lower your expectations to meet your performance," says athlete Ralph Marston. "Raise your level of performance to meet your expectations. Expect the best of yourself, and then do what is necessary to make it a reality." I've heard too many examples of adults with albinism who can't read for long periods of time, who read slowly, and who suffer from intense eyestrain and headaches. I don't know for sure that Lyra will experience eyestrain and headaches when she is older, but I can't say for sure that she won't. "As a thirty-five-year-old I personally wish I had learned Braille, especially with some of the things I've done in the workplace," says Julie Stevenson, an adult with albinism. "I've had to give several lengthy presentations, too long not to have notes for ... and it is not good PR to be constantly peering at a paper less than an inch from your face rather than looking at your audience."

The decision of whether or not a child should learn Braille should be based on input from his/her IEP team. It is not a decision that should be made based on the opinion or recommendation of any one person, including a doctor. Information from medical professionals is very important and very useful, and absolutely must be considered in the development of the child's IEP. However, the decision to provide Braille instruction is an educational decision, not a medical one. Would an education professional be qualified to make a medical decision? No. So why would a medical professional be qualified to make an educational decision? When making that decision, the team must consider the child's current and future needs. The reading requirements of a first grader are very different from those of a high schooler. As the print size gets smaller and the amount and complexity of reading increase, will the student still be able to keep up?

Parents considering Braille should request that their child receive a quality learning media assessment. The assessment should evaluate the child's abilities, not just in a controlled environment, but in a variety of settings. However, the assessment cannot be the only determining factor. One of the provisions of the Individuals with Disabilities Education Act (IDEA) is that a school may not use any single measure or assessment as the sole criterion for determining an appropriate educational program for the child. More information about the IDEA provisions regarding Braille instruction can be found at the following Website: <http://idea.edu.gov/>.

In terms of her cognitive abilities, Lyra is doing extremely well. She is imaginative and highly curious. I expect her to excel in school. Why shouldn't I? In our family we expect more than just average academic performance. What good does it do a child to base goals on ideas such as "at grade level" and "proficiency" if he/she is capable of excelling beyond those standards? Someday Lyra may decide she wants to be a brain surgeon, or a chemical engineer, or who knows what else. I want her to be equipped with whatever tools and skills she needs for that kind of success. I want to increase her independence and give her flexibility. Whatever she decides for her future, I will do everything I can to help make that possible.

Lyra is an individual. My husband and I are her parents, and we are making this decision for her. It would be unfair to say that what goes for one person with albinism goes for all. I won't criticize parents who choose for their child not to learn Braille, nor will I criticize adults with albinism who don't use Braille. That's their decision. Please respect and understand that, based on her needs as we see them, we are making the best decision we can for our daughter. We think of the old Rabbinical saying, "Don't limit a child to your own learning, for he was born in another time."

Update: Since the original publication of this article, Lyra had a very successful first year of preschool. She is progressing well with print and Braille. She has not shown a bit of resistance to learning Braille and has not developed any bad Braille reading habits. This fall she begins her second year of preschool and will receive even more Braille instruction each week. Lyra will also begin instruction in the use of low-tech magnification devices.

References

Holbrook, M. C., Koenig, A. J. 2000. Foundations of Education. New York: AFB Press.

Merriam-Webster Online. 2009. Disable. Retrieved August 4, 2009, from <http://www.merriam-webster.com/dictionary/disable>.

 

MAEGAN'S STORY

by Denise M. Robinson, TVI, PhD

From the Editor: Denise Robinson is a dedicated educator of blind students in central Washington. She holds a deep conviction that blind students can be as successful as their sighted peers when they are given the skills they need.

Maegan had a tough beginning. Soon after her birth she was diagnosed with retinoblastoma, a malignant tumor on her retinas. One eye had to be removed due to the size of the tumor. A series of treatments eliminated the cancer and left her with a visual acuity of 20/400 in her remaining eye.

Maegan entered school at the age of five with the joy of anticipation. That joy soon turned to heartache. Every day she broke down in tears. She could not see what the teacher was writing on the board or read most of the work that was put in front of her. In the school records her parents did not indicate that she had a visual impairment, so the teachers were confused and perplexed. The kindergarten teacher told the special education director that she thought Maegan had a vision problem. The teacher noted that Maegan brought books and papers up to her nose, and most of the time still could not see what was on the page.

As a teacher of the blind and coordinator of programs for the blind in the area, I was called in to evaluate Maegan. I began by phoning her parents to learn about her circumstances directly from them. Maegan's mom told me that Maegan came home every day with terrible headaches. Wracked with pain and frustration, she usually cried herself to sleep. I knew right away that Maegan's mom was very scared. She had not told the school that her child had a vision problem or explained her history of retinoblastoma because she had huge fears about what would happen if her daughter was seen as different. She was terrified that her daughter would be labeled "blind." I truly felt for her. I could not imagine the turmoil and grief that she and her husband were facing.

The following day I went to the school to meet Maegan. She was a bright, cheerful child with a great interest in learning. After I went through my evaluation I knew I had to help Maegan's parents make a leap of faith. They would have to acknowledge that Maegan was more blind than sighted, and that she needed training in blindness skills. She could learn to read print with letters one to two inches high, but she also needed to learn Braille, assistive technology, and cane travel. These were the skills that would open the way to success for her, while depending on large print would only lead to more heartache.

When a child has a vision problem, I like to start working with the family as soon as possible. Ideally, I would have begun formal Braille and technology training with Maegan at age three to prepare her for school. By now she was three years behind her peers academically, and her parents still were very reluctant for her to receive any special instruction. They did not want her to learn Braille, and they were even more opposed to the long white cane.

We started with small steps. I have visual-acuity lenses that help others see what a low-vision child is seeing. Everyone on the educational team looked through the lenses, but Maegan's mom would not even give it a try. I assured Megan's parents that she had nothing to lose by learning Braille, and that assistive technology would enable her to work as fast as, and eventually faster than, her sighted peers. Finally I convinced them to agree to three hours of Braille instruction a week. I knew this was not enough, and that Maegan's headaches and tears of frustration would continue.

As the months passed, Maegan's mother felt more and more pained by her daughter's unhappiness. The school was not managing to get all of Maegan's materials enlarged for her on time. Even when she had large print, Maegan continued to battle with headaches and slow reading speed. By the end of the year Maegan's mother was out of patience with the school's failure to get Maegan's work enlarged, and dismayed by her lack of educational progress. She went to a lawyer for help.

Her decision proved to be a blessing for Maegan and me. The lawyer she chose had experience fighting for the rights of the blind. She insisted that Maegan receive more training in blindness skills, including intense daily instruction in Braille and technology. The lawyer also said that the school should provide instruction to Maegan's family. I already had in place classes for parents throughout the year, but Maegan's parents had never attended. Once again the lawyer's advice was a huge blessing. Maegan's parents had no idea what they were getting into when they found her!

The following year Maegan received one to two hours of one-on-one instruction in Braille, technology, and cane travel each day. The more instruction she received, the faster she learned. However, when the teacher of the visually impaired (TVI) was not with her, things went less well. Maegan had a paraeducator who was very new and did not want to learn Braille or assistive technology. The para's attitude hindered Maegan's progress, as there was no follow-through on the lessons she learned with the TVI. By now, however, Maegan's parents were fully on board. They worked with her at home and made sure she also received instruction during the summer.

Maegan started the next year with a new paraeducator who was Braille certified and a teacher by nature. He easily incorporated the lessons from the TVI throughout Maegan's school day. This shift was essential, as by the beginning of second grade Maegan had lost all of her remaining sight. She could no longer use her CCTV or her large print books. Because she already had strong blindness skills, she was able to make a smooth transition to purely nonvisual modes of learning.

Maegan's family has come very far indeed. During one of our family nights this winter, when the area's families of blind children gather for learning and fun, Maegan stood up and talked about her life. It just about made me cry. Maegan's parents are seeing what she can do with the right tools, and they are not frightened by the word blind. When you have the tools to get you to where you want to be, blind is not a bad word.

When Maegan's parents tried to conceal her vision loss, they were seeing the image of the blind beggar beside the road. They had no idea about the possibilities that are available today through technology, education, and positive beliefs about blindness. As a society we need to educate people about blindness so that parents will not have so much fear if a child is blind or has low vision. Parents need to learn the tremendous value of blindness skills. Without the options of Braille and assistive technology, enlarged print does not give children the opportunity to compete with their peers. As Maegan gained blindness skills, her learning soared. Instead of a dismal future, her parents began to recognize her potential to live a full and rewarding life.

Anyone with a vision loss will be a second-class citizen if he/she tries to pass as sighted. He or she will not have the skills necessary for success, and will not be able to compete with the rest of the world. However, if a person with a vision loss learns to use Braille, assistive technology, and other nonvisual skills, that person can become a first-class citizen who just happens to be blind.

 

BRAILLE: UNLOCKING THE CODE

by Sheila Amato, Ed.D.

From the Editor: Sheila Amato is a long-time teacher of students who are blind and visually impaired, as well as a teacher of teachers. She edits a magazine for teachers of blind students called DVIQ.

The Graduate School of Education at Dominican College in Orangeburg, New York, includes a program to train teachers of the blind and visually impaired. Recently a number of students in this program participated in several activities to help them develop positive attitudes about Braille and a sense of Braille advocacy. One such activity is found on the course's Blackboard Discussion Board site. The students are required to watch a video and write an honest reflection based upon their present knowledge and changing attitudes about Braille use.

The video that the students were asked to consider was "Braille: Unlocking the Code." It explores the history and importance of Braille, with commentary and insights from successful Braille readers. After watching the video, the students were asked whether or not they thought the points made were valid. Below are some of their responses.

Sarah: I found this video to be very interesting and useful. A lot of the points made are things that I have read in textbooks, but sometimes it means more when you can actually hear a voice and see the person it is coming from. The thing that I found most interesting in this video was that only 10 percent of blind and visually impaired students are learning Braille. I think this could be due to a shortage of TVIs and also to the fact that people think students don't need Braille due to current technology. I think that parts of this video could actually help convince parents to let their children begin learning Braille. It was great to hear the little girl say that reading Braille helps her keep up with her peers, and that she would strain her eyes too much if she were using large print. I was amazed at the Braille reading speed of the children shown in this video. The part discussing myths about Braille was great too. I agree that students will learn Braille faster if they have a higher quality of instruction and a sufficient amount of time daily. If Braille is used properly, the students can read just as quickly and efficiently as a student who is reading a print book.

Reanna: This video was very informative about the history and importance of Braille. I found it shocking to see the pictures of the number of students who used to know Braille ... down to the 10 percent that know Braille today. I liked the emphasis on how Braille is the only real way for a blind person to become literate. The technology that is available is great, but it is very important for our students to learn how to read for themselves. The video also explored the idea that Braille is hard to learn. Although learning Braille can be time-consuming, you can say that about learning anything new! Learning Braille can be done, especially during the school years.

Rose: I enjoyed watching the video "Braille: Unlocking The Code." I found it extremely insightful and educational. I think that everything they said in the video is true of what people think today. It helps explain why there is a lack of Braille instruction for students who are blind. I think that most people believe that if something is easier or more advanced, such as computer technology or books on tape, it is better. That is not necessarily true. Every aspect of learning to read and write is important for ALL students. The importance of teaching and learning Braille for our teachers and students should be the concern in education today.

Kathy: The video "Braille: Unlocking the Code" was excellent. As the semester progresses, the mystery behind Braille is being unveiled. Braille is literacy for those who are blind. I currently collaborate with a teacher whose class is learning the foundations of reading. The class is composed of six autistic students, two of whom are blind. Both the sighted and the blind students are beginning to learn the alphabet. Everyone is learning A for the week and things that start with the letter A. Reading Braille appears slow to a sighted person, but a blind person can read Braille with the accuracy and speed we have when we read print. It is very important for a TVI to remain proficient in Braille. Re-certifying every five years will not be easy, but it will benefit those we teach!

Kelli: It was wonderful to watch such an empowering video, and it felt even more empowering to read its impact on sighted people. I definitely need to bring this video to all the skeptics at meetings! There is one point in the video where people start talking about the NFB and not about Braille anymore. That might be confusing or distracting to people who just want to know why Braille is important and who have no idea what the NFB stands for. But I also know I have a bias there, since I've been to a lot of NFB events. I love their overall message and most of the work they do. Their promotion of Braille is honest, sincere, and full of commitment, and I admire that very much. I guess I get a little anti-group sometimes, but groups are necessary to accomplish any kind of systemic change. Just to be devil's advocate maybe, I don't think listening is totally passive. Good listening skills are essential for those who can use them, and listening brings in a lot of information about the world that people don't have access to otherwise. But I definitely agree that maximum independence has to be achieved through actual reading, not just by hearing everything. It is necessary to read and write out sentences in order to understand their construction fully. When I was a little kid learning Braille, spelling confused me at first because the contractions are not fully spelled-out words. One of my Braille teachers made a box of flash cards so Mom could practice with me at home, and I learned both the contraction and the real spelling of each word. It saddened me to learn that Braille instruction has declined so drastically that a certification test every five years is necessary. It's almost as if the present and future teachers are being punished for mistakes of the past. However, the most important people in the equation are the blind students. Taking a test is a much smaller inconvenience for a competent teacher than not reading is for a student!

Cathleen: I enjoyed watching this video and gaining an insight into the world of Braille and the decisions as to who teaches Braille, when it is taught, and how often it should be taught. To me, Braille is literacy. In a typical school, students have a literacy block of at least forty-five minutes. Many schools have an hour and a half. During this time, students read, write, listen, and speak for information and understanding. This approach should be exactly the same for a visually impaired student. The student should be taught to read Braille, use a variety of methods to write Braille, listen to stories read by others along with their peers, and speak with their classmates. A TVI has the ability to come into the classroom during these blocks and serve as a resource for the visually impaired child. If this starts at an early age, children will have the tools needed for success. Since there is such a shortage of TVIs, I also think it would be a wise idea to teach peers in the classroom some basic Braille. It might spark their interest and maybe create some future TVIs!

Andrea: I truly enjoyed watching this video. My husband actually watched it with me and we both found it very educational! I think it made some extremely valid points. Once a blind student understands the letters, just like a sighted student understands print, reading becomes easier. As for Braille becoming obsolete, I don't see that happening. We need to provide blind students with an opportunity to read, and Braille is the way. We would not remove print from a classroom for sighted students! We definitely need to push to make others understand the importance of Braille and the value of constant exposure. I am not thrilled with the idea of having to take a test every five years, just because I don't like tests. I think as TVIs we have a responsibility to our students to stay up-to-date. Braille is like anything else, use it or lose it!

Alisha: I believe all the points they made in the video were valid. Is Braille hard to learn? Not if you put in the time and practice that are necessary to become literate in the Braille code. I came into this program with zero experience with Braille, and I am sure the same is true for many others. I thought that learning Braille was going to be hard. However, after the first week, my beliefs changed. Of course certain aspects are more difficult than others, but if you keep at it and practice, you will succeed. I have no doubt about that. I liked the way the video stated that listening is not reading. If we just give blind students audiobooks they will not learn spelling, punctuation, or grammar as a sighted child does. As for the myth about Braille being slow, I wonder if the people who think this have ever seen a blind person read Braille out loud. I would hope that their theories would change right away.

Susannah: I found this video to be very interesting. Because Braille is such an important invention for people who are blind, why is it not being taught more? Why is the percentage of those using Braille so low? I have to agree that Braille being difficult to learn is one of the biggest myths associated with Braille. I hate to admit this, but until this class I always believed that Braille was hard. I never thought this was a class where I could succeed. To be honest though, the basics are quite easy to learn. This statement does not include my current learning of contractions! But in time it will become easier.

Austin: I really enjoyed watching that video. I was amazed to see that only 10 percent of blind people are actually able to read Braille. Then I remembered what a shortage of TVIs we have. They stated that not all of the teachers certified to teach Braille can read and write Braille effectively. I agree that it is necessary to have teachers take a test every five years to make sure they are up to par with Braille. In my schooling I keep hearing the same myths, that Braille is hard, slow, and obsolete. I think that for sighted people the thought of learning Braille is frightening. But I have to say, it is not that scary. In fact, it is fun and exciting. Don't get me wrong, it is hard at first. There is a great deal to memorize, but it all comes in time. As far as reading Braille tactually, I have to say that I think it would be difficult for a sighted person to do. I have tried and have failed, but I will keep trying.

Dianne: I think that they make some really great points in this video. They demonstrate how Braille is useful by showing that successful blind people use Braille in the workplace to read lecture notes, documents, financial reports, etc. The speaker stated that 80 percent of professionals who are blind know and use Braille in the workplace. Only 10 percent of students are currently learning Braille. I liked when the speaker said, "Braille allows you to travel to different countries, meet pirates, etc." Braille allows a young child an imagination. I remember fondly reading my books under the covers late into the night with a flashlight, going on fun adventures with Pippi Longstocking. I don't understand why we are depriving blind children of similar experiences in literacy. Yes, Braille is a bit difficult, but no more difficult than regular print or keyboarding. The younger the child is, the more he/she will soak it up. When a child is five or six, that is the perfect time to start teaching Braille.

Denise: Oh, the possibilities! What an infectious message this video delivers! Braille is beautiful! As I watched the video I was encouraged by the reiteration of what I have heard and read as well as what I have come to believe about Braille and its empowering qualities. It is hard to take in that it took so long for Braille to be adopted, especially in the United States. To echo the sentiments of those shared in the video, hopefully without being redundant: Braille is essential to success and keeping up with one's sighted peers. Braille is liberating and allows a blind or visually impaired individual the opportunity to explore the world. Literacy is attainable. Believe.

 

THE COMPREHENSIVE MUSIC PROGRAM FOR YOUNG PEOPLE AT LIGHTHOUSE INTERNATIONAL

by Dalia M. Sakas, D.M.A.

From the Editor: Like all students, blind students study music in a wide variety of settings. In this article Dalia Sakas describes a special program for blind students in New York City.

The positive influence of music on children's learning has been the subject of countless studies, essays, and books. Exposure to music lessons is related to improved math skills, better problem-solving, and higher grades in school. For blind and visually impaired children the study of music and the arts brings the added benefits of increasing self-awareness and self-confidence. We see these positive effects every Saturday here at the Filomen M. D'Agostino Greenberg Music School of Lighthouse International in New York City.

Lighthouse International has existed in the New York area for more than one hundred years. It was founded by the Holt sisters to offer tickets for musical performances to people with vision impairments. Winifred Holt and her sister, Edith Holt, were the daughters of publisher Henry Holt. At a concert in Florence, Italy, they noticed a group of blind schoolchildren in the audience, enthralled by the music. They discovered that a free ticket program provided the children with access to the concert. Inspired to create such a program back in New York City, the sisters established the Lighthouse Free Ticket Bureau in the parlor of their Upper East Side home in 1903.

The Holt sisters quickly learned that more was needed than access to the arts. They launched a groundbreaking campaign to train blind people and to prevent blindness-causing diseases. Eventually the program expanded and developed into a formal music school. This community music program has served generations of visually impaired students. The school receives funding from a variety of foundations and individual donors. It was recently awarded first-time funding from the New York State Council on the Arts, which provided support to the school for a three-year period.

Over the past century the school underwent many changes. At times choral groups were strong and visible. For a while a yearly opera production held the limelight. Several instrumental musicians have passed through, garnering praise and admiration. These days the Comprehensive Music Program for Young People (CMPYP) is getting attention. The program flourishes with some twenty-five confident, dynamic students attending every Saturday.

The CMPYP began seven years ago with five young boys who were taking piano lessons at the school. Tough budgetary cuts to music programs in the New York City schools greatly restricted the students' opportunities. To fill this gap the Lighthouse Music School established a special program for blind and visually impaired youth. The program sought to empower children to become better musicians and, in addition, to facilitate a broader appreciation of the arts by making museums and other cultural institutions more accessible. Three classes--percussion, singing, and music appreciation--made up the core of the program. We believed that the students needed to be literate musicians, so we introduced and strongly promoted Braille music. The use of large print is customized for students with low vision.

Classes

Created by Marc Wagnon, the percussion class develops rhythmic awareness and acuity, as well as the students' listening and response skills. The class runs with minimal discussion. Drum cues signal responses and changes in rhythmic patterns. Students must listen carefully to know what to do next. Marc introduces various rhythms and patterns, from samba to complex African beats. The students' reactions and responses become sharp and accurate.

Singing and solfège are developed in singing class using Kodaly hand signals. The Kodaly Method is an approach to music education developed in Hungary. It is named for Zoltán Kodály (1882-1967), a composer and advocate for better music education. In solfège, sight-singing is taught using the sol-fa syllables for the notes of the scale. Kodaly hand signals corresponding to each syllable are made in front of the body, giving a physical representation of a vocal pitch. "Do" is at waist level and "la" is at eye level. Some of the students have perfect pitch and a very unique understanding of fundamental music theory.

General music and music appreciation classes focus on listening to and discussing great compositions. Various approaches are used to reinforce concepts and ideas. We listened to Mussorgsky's Pictures at an Exhibition and discussed the audio pictures the composer created after he saw a friend's paintings. Then we did the reverse--an artist visited the class and helped the students make clay sculptures based on the pieces of music they heard. We discussed form in music using Styrofoam shapes.

Classes explore different themes each spring, culminating in a Class Showcase Recital. Last year students illustrated The Seasons by Vivaldi, using dance, costumes, and songs. This year's theme is astronomy. We were recently honored with a visit and discussion with the esteemed author Dava Sobel.

Enrollment in the program has grown dramatically these last five years, and the nature of the classes has changed accordingly. Braille music and theory have become more important to some of the students. We teach computer music to the older students who have a working knowledge of the computer and have achieved a certain degree of skill on their instruments. We currently offer lessons on piano, drums, guitar, and flute, and will expand when the need arises.

Two classes taught and administered by the National Dance Institute are important additions to our program. Through piano and other music classes we could not teach movement or help students develop a better sense of mobility. The dance classes have been wonderful. They have instilled our students with confidence and self-assurance, and they are a good source of exercise, too.

Field Trips

Wicked is one of the most popular shows currently playing in New York City, and this year our students had the opportunity to attend. Some of the actors came to our school to introduce the story and give the students a hands-on view of costumes used in the show. We also prepared by learning to sing one of the songs. The performance we attended had audio description, much to the students' delight. When we got to our seats they heard a detailed description of the theatre through headsets before the show began. A continuous description of the production gave our students a truly unforgettable Broadway experience.

Some museums in New York have set up special programs for visually impaired visitors. We have availed ourselves of programs at the Metropolitan Museum of Art and the Museum of Modern Art. To visit the Rubin Museum of Art and the Louis Armstrong Museum, neither of which have programs for visitors with visual impairments, we worked with staff to arrange special tours. The Rubin Museum described works of Tibetan art and presented the students with a concert of sitar and tabla music. The Louis Armstrong Museum graciously opened its doors to us with a guided tour of Armstrong's home, complete with excellent verbal descriptions. As well as exposing our students to new facets of the arts, we have influenced the community to expand services to another segment of the population.

Since many of our students take piano lessons, we visited a piano factory. The students could touch and explore the various parts of the piano, giving them a better sense of the instrument they were endeavoring to master. We visited St. Ignatius Loyola Church in New York, where world-renowned organist and conductor Kent Tritle gave us a wonderful demonstration and explanation of the church's new organ. Central Park has been the scene of several outings. On a guided tree walk, an expert helped us identify various trees and shrubs. We went for a picnic and listened to storytellers as we sat by the statue of Hans Christian Andersen.

Our Students

Our students are vibrant and curious. They are excited about music, the world, and anything that is presented to them. They are unendingly inquisitive and are an infinite source of questions.

A fair number of our students have excelled in areas outside our music program. Daniel Gillen wrote a wonderful essay that won him a week in Provence, where he studied the art of fragrance and perfumery with the company L'Occitane. Daniel also appeared online with a review of the audio-described performance of Wicked. Yerko Difonis attends Fiorello H. La Guardia High School of Music and Art and Performing Arts. He won first place in New York State's VSA-ARTS Young Soloist Competition 2010. He will now compete for the top prize in the national contest. Several other students who attend our music program have been winners in the National Braille Challenge.

These casual observations, though undocumented and unscientific, strengthen my conviction that music study has an enormous influence in the lives of young people. It helps build character, reinforces learning skills, and promotes talent. The Music School and its youth program are unique and valuable resources for the visually impaired community in the New York Metropolitan Area and beyond.

 

BLOWING MY OWN HORN

by Gordon Kent

Reprinted from The Log of the Bridgetender, Spring 2010

From the Editor: It takes more than good musicianship to play in a marching band. Band members must learn and follow precise maneuvers that turn the musical performance into a full-fledged show. Although these routines present challenges, blind students have been playing and marching for decades. Gordon Kent, a professional musician and arranger who lives in Washington, D.C., recalls how it worked for him.

The appearance of the marching band from the Ohio State School for the Blind in the 2009 Rose Bowl Parade was a landmark event. It sparked considerable interest in the participation of blind and visually impaired students in high school and college marching bands. I would like to share my own experience as a member of the marching band at my high school in Little Falls, New Jersey. It happened quite some time ago; I graduated from Passaic Valley High in 1970. We're all familiar with the old adage, "If you remember the Sixties, you weren't there," but I'll do my best to recall how it worked for me forty years ago.

When I started marching with the band, my dad worried aloud that I would lose my place and end up all alone on the fifty-yard line during our halftime show. Dad had a rich imagination, and sometimes it led him to worst-case scenarios. I guess voicing his fears was his way of trying to deal with them. Luckily his worries were unfounded. My parents came to quite a few home games to watch me. They were both avid football fans, and since nobody in our family played team sports, I was the closest we ever got to a football hero. But I've jumped ahead of myself. As we musicians are fond of saying, "Let's take it from the top."

In eighth grade, while I was attending my neighborhood school, I took up the saxophone. I had been playing piano most of my life, but I thought that playing rock 'n roll sax would be really cool. Each of the town's three elementary schools had a small, ragtag band that occasionally played for assemblies in the auditorium. The three bands combined to put on an annual spring concert. This was a real thrill for me, as I'd never had the chance to play with a decent ensemble before.

During one of our rehearsals for the concert the head of the high school music department stopped by to audition prospective recruits for the band. My hand shot up when he asked if any of us wanted to try out. He asked several drummers to play basic rudiments and had some other players do a bit of sight-reading. When my turn came he just asked me to play something after going through the obligatory scales. I remember I played "Strangers on the Shore," a popular song at the time. He told us he would get in touch to let us know if we had been accepted.

I never heard back from him. In an uncharacteristic display of shyness, my parents and I didn't check any further. When the time came for me to fill out my high school course schedule, I joined the choir instead of the band. Because I was a freshman my parents really wanted me to have a study hall period, which would not have been possible if I took both choir and band.

A few months into my freshman year, I was sitting in our local barbershop when the music department head, who lived nearby, happened to walk in. I asked him pointblank why he hadn't accepted me for the band. He paused for a few seconds and said, "Oh, you could have come. You were certainly good enough." I must have shaken my head in bewilderment, but I vowed to join the band the following year.

Once I signed up for the band I don't recall meeting any resistance. Each problem that arose was handled calmly and logically. The tenor sax parts for some of the songs we played were transcribed into Braille music so I could memorize them ahead of time (I don't remember who we found to be my music transcriber). The songs included standards such as "On, Wisconsin!" "Fight On!" and our school's Alma Mater. Everybody was expected to memorize the music after a couple of weeks. I had an advantage since, as a blind musician, I always memorized my music anyway.

Our band had sixteen squads, each with four to six members. Sometimes the squads moved together as a unit, as when we marched in a parade or took the field to start a show. They could also move independently in various combinations--marching forward, turning, stopping, bowing, or pinwheeling (marching in a wide circle) to form letters and geometric shapes.

Whenever we started to learn a new routine, we got handouts outlining each squad's movements. I Brailled out my part, which might go something like this: (1) forward 32; (2) stop 8; (3) pinwheel left 16; (4) forward 8; (5) bow and hold 16; and so on.

I was pretty obsessed with memorizing the routines cold. I certainly didn't want my dad's fears to come to life! Fortunately for me, our band wasn't exactly the tightest marching unit on the planet. Some of the other schools in the area treated their marching bands like drum corps, developing very complex and precise routines.

It was decided early on that I should march in the frontmost squad, which was designated 1A. It didn't make the most sense musically, as my squadmates were playing flute and piccolo. However, it made sense physically, since there was less congestion and confusion up front. I ended up between two girls, Vicki and Denise. Denise was the only African-American girl in our school at that time. Back then some people may have thought it was pretty radical to have the only blind guy and the only African-American girl marching side by side. Vicki and I became good friends and even dated occasionally throughout our time in high school. A nudge from her now and then to get me back on track really wasn't such a bad thing.

In my junior year I switched from sax to trombone. The change made me appreciate marching in the front squad more than ever. A trombone slide can do serious damage if it hits somebody.

I look back fondly on my marching days. Being a part of the band helped me carve out a niche socially, something we all know can be difficult for anyone who is perceived as being different. I had the thrill of marching in a parade to honor Buzz Aldrin shortly after the return of Apollo 11. I even got to write music for the school's concert, stage, and marching bands. My marching band arrangement was--believe it or not--a beguine treatment of "By the Time I Get to Phoenix."

To any student who considers joining the school's marching band, I say go for it! Quite a few of us are here to testify that it can be done. Most of all, it can really be a lot of fun.

 

STEP TO THE MUSIC

by Kayleigh Joyner

From the Editor: A high school musical production gives students the chance to build friendships, learn a host of new skills, and experience the bonds of teamwork. A blind performer may face some particular challenges. However, the hurdles need not be daunting, as Kayleigh Joyner demonstrates. Kayleigh Joyner was a winner of a 2010 NFB national scholarship.

I had always dreamed of participating in my high school musical, but year after year I didn't audition. I worried that the intense rehearsal schedule would interfere with my study time and that my grades would suffer as a result. At last, in my senior year, I knew it was now or never. When the day for auditions arrived, I was ready.

Our musical was The Pajama Game, one of the big Broadway hits from the 1950s. At the audition we were each given a form to fill out. The form asked us to state our past experience with musicals and to list the role for which we would audition. We could either try out for a lead role or audition to be part of the ensemble. Since this would be my first musical, I decided to audition as an ensemble member.

While everyone else was grabbing their sheet music, I found my choir director and asked him if he had enlarged a copy for me. I haven't been taught Braille music, so I needed a copy in large print. The choir director gave me his usual response: "No, I forgot." He gave a copy to the assistant director and she went off to enlarge it for me.

While I was waiting for her return, everyone else started to practice the excerpt we were using for the audition. I tried my best to follow along, but without any music it was a bit difficult. I didn't know the words I was supposed to sing, let alone whether the pitch of the note went up or down. When I finally got my copy we went over it a few more times before people started going into the room to audition.

I was unsure how to sing for this audition because most of my singing experience was choral. I asked for advice from a few of my choir friends who had more experience with musicals. Then it was my turn to audition.

Seven or eight students auditioned at a time. First we sang the excerpt with the piano. Then we sang it a cappella, without accompaniment. A few days later the final list was posted. My name was on the list under the ensemble category! I had two parts in a small group.

Rehearsals began early in October. When I received the list of rehearsal dates, I asked my case manager to help me find someone who could assist me with learning the choreography. My case manager was the person in the special education department who coordinated my accommodations at school.

A month or so went by, and I still hadn't heard anything from my case manager. Meanwhile, my father took videos of one of the rehearsals, hoping I could study the dance steps by watching at home. It seemed like a good idea, but it didn't work out in practice. I then asked my choir director for assistance in finding someone to help me. "You'll have to find someone on your own," he told me.

I knew that one of the girls in the musical, Shannon, was a member of the drill team. I decided to contact her and see if we could work something out. In December I talked with her and she agreed to teach me one-on-one. When I asked her if she would be comfortable with positioning my body to show me the movements, she said that wouldn't be a problem. She also explained the routines verbally. Since I can see some color contrast, we marked the stage with yellow tape, which helped me see where I needed to stand. I learned the complete layout of the set in each of the scenes where I appeared. I used cues in the lyrics to tell me when it was time to move.

Once Shannon and I started working together, I understood the choreography a lot better and made great progress. During one rehearsal the choreography director complimented me on the good job I had done remembering the choreography. Later that day one of my friends overheard the choir director ask the choreography director, "When are you going to take out the bad dancers?" He was pointing to my name. The choir director made this comment just after the choreography director had complimented me. His comment made me determined to prove him wrong. I worked harder than ever to master every aspect of the dance routines.

Then, all of a sudden, it was opening night. Our hard work, dedication, time, and effort was about to pay off! Excitement hummed as show time drew closer and closer. At times the costume changes were frantic. Through it all I felt an enormous sense of pride. When we went out for our curtain call at the end of our show it felt great to know that we had made the audience forget their troubles in the real world for a few hours, and that they were able to relax and enjoy a great show.

I will always treasure my memories of my high school musical and will cherish the friendships I strengthened by taking part. I only wish I had auditioned for other performances during my high school years. I found out that it wasn't as hard as I feared to keep up my grades and attend all those rehearsals. I am so glad I decided to participate. I found that I was able to overcome the obstacles in my path. I hope I showed the rest of the cast and crew that even if someone is blind she or he can perform the choreography as well as anyone else. This was an experience that I will never forget.

 

ALL THINGS POSSIBLE

by Crystal Morales

Reprinted with permission from TX SenseAbilities, a publication of the Texas School for the Blind and Visually Impaired, Fall 2009

From the Editor: In 2008 Crystal Morales received her BA from East Central University in Ada, Oklahoma. She hopes to find work as a teacher of deafblind adults.

When our mom, Cynthia, was told that her little girls would never make it, she said a prayer. "I will be the best mother I can," she prayed. "Please let my little girls survive." We did survive, but our story had only begun.

My twin sister, Danielle, and I arrived three months early to meet the world. We barely survived heart surgery when we were four hours old. That surgery was followed by lung disease and many other conditions. It was all quite stressful, scary, and dramatic.

Both Danielle and I were born with nystagmus, strabismus, ambliopia, and several other eye conditions, along with hearing impairments. The doctors told Mom that we would both be profoundly deaf and totally blind if we survived to the age of twenty-one. They were always telling her about horrible conditions and diseases that could eventually kill us. Sometimes Mom lay awake all night, crying about the terrible things that might happen to us some day. Yet she found the strength to help us go to school, even home-schooling us for a short time.

Danielle and I also had frequent mild seizures. They interrupted our day up to twenty times, leaving us tired and distracted. Our seizures became more severe as we got older, but with medications they are now more manageable. With all of these things going on in our lives, we remembered the phrase Mom said over and over, "All things possible, girls."

After years of physical therapy, medications, speech therapy, and special education, we graduated from high school at the age of twenty. We were two eager, motivated, confident deafblind young adults. While we were in high school we received great help from deafblind specialists, Braille instructors, and orientation and mobility teachers. We also obtained assistance from the Texas Commission for the Blind, now known as the Department of Assistance and Rehabilitative Services. We knew that with our disabilities college would present many challenges, but we also knew college was something we really wanted. Our mother had always stressed the importance of getting an education. She taught us to find ways to do things, no matter how hard it was. She always taught us never to give up.

From the time we were six years old, Danielle and I loved to compose music. We wrote songs every day together. As we grew up, so did our musical ability. We performed for small audiences until we put together a professional concert. Then we widened our scope to perform at colleges and universities, on radio stations, on a local news station's live music section, at private events, and even in coffee shops and local music stores.

Although we enjoyed this work very much, our hearing difficulties were increasing. After a while we found it hard to hear and enjoy our compositions. Mom was afraid we would lose all of our hearing in the next few years, and she wanted to capture our work before that happened. Eventually we put together two CDs of original material. Naturally we had to give our first CD the title "All Things Possible." Our second CD is called "Meditations."

Currently we both have profound hearing loss along with severe visual impairment and epilepsy. Today we compose music in our modified music studio that is fully accessible. All of our speakers, amplifiers, and equalizer machines allow us to hear our music, though we don't hear in all the ranges. Our keyboards, synthesizers, and recording devices are marked in Braille and have hand-Brailled manuals and menu pages. Our acoustic instruments, such as the violin, cello, bass, and hammered dulcimer, are individually tuned and mic'd so that we can hear them. We can even connect our iCom Bluetooth system to the amp so that it sends the signal to our hearing aids wirelessly. We had to figure these things out on our own. It sure makes us feel good, knowing that we can be self-sufficient and creative. We knew that there would be a way for us to continue composing, no matter how much hearing or vision we lost.

Today we live life energetically. We compose music and travel around the city of Austin. We have learned sign language and Braille. We have found ways to meet others like us and to make great friends with people of many abilities. As Mom always said, "All things possible."

 

NAVIGATING THE SOCIAL LANDSCAPE: STRATEGIES FOR SUCCESS

by Arielle Silverman

From the Editor: Why do some blind children and teens make friends easily while others struggle? Arielle Silverman, president of the National Association of Blind Students (NABS), shares her thoughts on this crucial topic and outlines a series of useful strategies.

When I talk to sighted audiences about blindness, I am frequently asked whether I was teased or ostracized as a blind child mainstreamed into a public school. The topic of fitting in also comes up again and again in discussions among blind people and their families. Parents worry that their blind children will have trouble making friends. Blind youth often describe difficulty building meaningful, reciprocal relationships with sighted classmates.

I am twenty-five years old and I have been blind since birth. I have experienced my fair share of lonely days on the playground and times when I stood on the periphery of groups, feeling that I didn't quite belong. Yet I've discovered that true integration into the predominantly sighted community is possible if we as blind people approach the challenge armed with a positive attitude and a few mental tools. After reflecting upon my own experiences growing up and talking with blind youth and their parents, I have developed five strategies that you and your children can carry in your toolboxes. I hope these ideas will help your children grow into well-adjusted, well-integrated blind adults.

Strategy 1. Set appropriate goals.

What does it mean to have good social skills? To fit in? We often throw these terms around without really defining them. In my view, the goals for a blind child's competence in Braille or math are more or less the same for everyone, but the goals we have for the child's social competence can be much more flexible. Before determining how you can best support your child's social development, it is beneficial to think about what your goals and expectations should be. Social connectedness means different things to different people. Some children and adults are extroverted, thriving on a great deal of social stimulation. Extroverted kids are usually eager to seek out connections with others. Your goal for such a child may be to help him/her channel this natural assertiveness and build a wide network of friends. Other kids and adults are more introverted and prefer much less social stimulation. I land somewhere toward the introverted end of the spectrum, and initially I needed encouragement to become interested at all in spending time with others. For introverts, having a few deep, stable connections may be a more satisfying goal than building a wide friendship circle.

In addition to helping your children build social connections that fit their needs, I believe it is important for parents to teach their blind children the importance of reciprocity. All kids, sighted and blind, must learn to be considerate of other people's needs and to treat others with kindness, fairness, and respect.

Finally, I believe that accepting oneself goes hand-in-hand with being accepted by others. Blind children often encounter the message, conveyed in big ways and small, that they are not quite as good, or as strong, or as competent as their sighted peers. It is critical for a blind person to feel secure and appropriately confident about himself/herself in order to build relationships with other people in a healthy way.

Strategy 2. Empower your child to set and reach appropriate goals.

Once you have contemplated what you would like your child to achieve in terms of social competence, you can help your child make these goals her or his own. As blind children grow, they must gradually learn to solve their own problems in life, including those related to blindness. The challenge of fitting into a sighted peer group is similar to other issues of access or advocacy; ultimately it is up to the blind person to find creative solutions.

I cannot continue without mentioning "blindisms," those pesky habits such as rocking, twirling, and eye poking that can make a blind child stand out in a crowd. I have often heard the argument that parents and teachers can beat blindisms simply by making the child aware that the behavior is undesirable and providing consistent reminders. Like many congenitally blind children I have struggled with blindisms for most of my life. I can say from experience that all the reminders in the world will do no good unless the child inherently cares about being socially appropriate. Without that intrinsic motivation to fit in, the child will only refrain from inappropriate behavior when a parent or teacher is around. The expectations have to come from you in the beginning, but eventually the child must internalize the goal of integrating and find her own ways to achieve that goal.

While kids vary in their inherent desire to make friends, research shows that almost all human beings experience joy when they are included by others and pain when they are excluded. I disagree with the blindness professionals who say that social skills must be taught in a classroom setting. I think this is an incomplete and needlessly rigid way to teach real-world skills. The best teacher is the reward of being accepted when you have acted appropriately. Parents and teachers should provide feedback to help children make the connection between their behavior and social consequences, but in the end it's up to the children to take control of their social lives.

Strategy 3. Foster opportunities.

As your child begins to internalize the goal of fitting in, you can help him find ways to meet people and build connections. It may mean finding activities, both in and outside of school, through which your child can meet others who share his/her interests. It may also mean helping your child figure out how to adapt activities, such as games on the playground, in order to participate fully. When blind children have to sit on the sidelines because they cannot fully access an activity, it is hard for them to be regarded as part of the group.

In my experience, interactions between blind and sighted people go most smoothly when the blind person takes initiative. Sighted people of all ages may hesitate to approach a blind stranger, not because they dislike blind people but because they think they don't know how to interact. If the blind child or adult takes the lead, the sighted person will start to realize that blind people are pretty much the same as everyone else.

Strategy 4. Foster independence.

When I was in elementary school, I was expected to travel around the school with a sighted guide, even though I also was using my cane. A different classmate was assigned each day to be my guide. This child was responsible for getting me from the bus to the classroom and later to the playground and the cafeteria. In the afternoon my guide led me back to the bus. At around the time this sighted-guide arrangement was implemented, I began to have trouble being included on the playground, especially when the other kids were playing sports. In retrospect, I realize I could not expect my classmates to guide me everywhere and then to invite me to join their rough-and-tumble games. I'm not surprised that I was seen as a burden by many of my peers.

For blind kids really to fit in, it's crucial for them to have age-appropriate travel skills. The long white cane is our vehicle to safe, independent mobility. To be an equal partner in relationships with sighted peers, a blind person must be able to take care of his/her own needs. Today if I go to a party, I get myself there independently. I walk around and mingle and stand in line to get my own food. I may accept a ride from a friend or take someone's arm at times, but my friends know they don't have to babysit me when we are together.

Blind children must be expected to give and reciprocate in relationships. We are often conditioned to take assistance from others without giving back. However, giving is an essential part of any healthy relationship. Set the tone by teaching your child to do meaningful chores around the house. Expect him or her to be responsible and accountable to others. These values will be important for socialization and in professional life as well.

Strategy 5. Cultivate ties with the blind community.

For several years when I was growing up I attended a summer and weekend program for blind children. Some of the kids I met through the program became my closest friends. When I was with them I felt truly "normal," defined by all of my personal characteristics rather than by my blindness. In groups of sighted peers I often drifted into the background, but with the blind kids I felt free to adopt a leadership role. I also found that while sighted peers often hesitated to tease me or to give me honest feedback (it's not cool to pick on the blind kid!), I learned many hard lessons about trust and integrity from the blunt, direct communication I shared with my blind friends.

As blind students we often debate whether or not we should associate primarily with other blind people. Sometimes in these discussions I hear the implication that one must choose between having blind or sighted friends. I believe that being connected to both communities is ideal, and I am fortunate to know both blind and sighted people whom I can call my friends. The deep friendships I forged within the blind community have given me the self-confidence and social experience that I needed to build meaningful connections with sighted people. The more opportunities your child has to interact with blind peers and older blind role models, the more he/she (and you, too) can truly believe that it is okay to be blind.

Conclusion

For me, learning to fit into the sighted community has been an ongoing process, and challenges still remain. However, I have found that with patience and awareness it is possible to enjoy strong relationships with sighted colleagues and peers. I think of the development of social skills as one more aspect of maturation. If the environment is rich with opportunity and support, your child will be his/her own best teacher.

 

COLLABORATIONS AND CONNECTIONS

An Interview with Brett Page

From the Editor: It is always exciting to meet professionals who are deeply committed to their work and who are eager to explore innovative approaches. One such professional is Brett Page, school psychologist at the Ohio State School for the Blind. In this interview he talks about his work with blind children who have additional disabilities and his efforts to build bridges between professional communities.

Deborah Kent Stein: How did you become involved in work with blind children who have additional disabilities?

Brett Page: I began my career in the field when I was hired as the first school psychologist at the Kentucky School for the Blind in Louisville. After two years at KSB, I continued working with students who were visually impaired or blind as a school psychologist in the Columbus, Ohio, school system. I transitioned to my current position at the Ohio State School for the Blind in 2005. Throughout my career I have served students with multiple disabilities, including those with severe vision impairments or blindness. At OSSB my daily work frequently involves providing assessment, intervention, and counseling services for students with multiple disabilities who attend our school. I also periodically travel throughout the state to provide consultative assessment services.

DKS: Did any personal experiences shape the way you think about blindness and the abilities of blind children?

BP: I was very close to my maternal grandfather when I was growing up. He was a successful engineer who lost his sight gradually due to an injury. He was a great role model for me. He never let his vision impairment stop him from completing large or small tasks. I guess I felt the work I'm doing was meant to be. He was very proud when he heard I decided to take my first job at the Kentucky School for the Blind. I enjoy taking on new challenges every day, just like my grandfather did.

DKS: A lot of educators and other professionals believe there is a high rate of autism among blind children. What are your thoughts about that?

BP: Many students with severe vision impairments or blindness have significant social interaction, communication, behavioral, sensory integration, and cognitive processing issues. Is it true autism? It's hard to know for sure. Whatever you want to call it, it is important to address the unique needs of each specific student. The framework of autism has opened me up to assessment and intervention methods that I believe make significant differences for these students. The autism community--professionals in the autism field, those actually diagnosed with an autism spectrum disorder, and parents of kids on the autism spectrum--have come up with some terrific methods for working with diverse learners. I think we need to accept that an increasing number of children with severe vision impairments or blindness have additional significant disabilities that may include autism. Professionals working in our field must think in fresh ways in order to address the developmental needs of these students effectively.

DKS: How much communication exists today between the autism community and the blindness community?

BP: Traditionally they've been pretty separate. A lot of the tools and methods that have been developed to teach kids on the autism spectrum are highly visual. Historically the thinking is that people with autism are visual learners. For instance, some common intervention methods include use of picture schedules, picture stories, and picture cards for vocabulary. The concepts behind these methods need to be adjusted for use with students who are visually impaired or blind. In 2007, I helped organize the world's first conference focusing on the topic of autism and sensory impairments. "Sensory impairments" included blindness, deafness, and deafblindness. It was a highly successful conference that involved much collaboration between the Ohio Center for Autism and Low Incidence (OCALI), the Ohio State School for the Blind, the Ohio School for the Deaf, and the Ohio Center for Deaf-Blind Education. The conference was held in Columbus. It brought in some of the leading people working with children identified as having various sensory impairments and autism. It got everyone thinking in fresh ways about the issues.

DKS: Tell me about the work you're doing to develop nonvisual materials for your students.

BP: Right now I'm working to modify a series of books created by Michelle Garcia-Winner, an internationally respected speech and language therapist who works with children with autism. Garcia-Winner's books help kids who have problems with what we call social thinking skills. Social thinking skills involve such skills as perspective-taking and being able to think about a variety of potential solutions for solving various life problems effectively. Many students with vision impairments or blindness exhibit challenges with these skills.

To teach these skills to younger children, Garcia-Winner has developed a comic book-based series in which the lead character, Superflex, takes on thirteen villains called the Unthinkables. In the stories the Unthinkables attempt to get into the brains of children and get them to make bad social decisions. For instance, one of the Unthinkables is called Rockbrain. Rockbrain tries to get children stuck on their own thoughts so that they ignore other people's feelings and actions. Superflex is the superhero who gives the children in the stories flexible thinking strategies to defeat Unthinkables such as Rockbrain. The overall concept taught to the kids is that Superflex lives within each of us. We can apply flexible thinking strategies to situations in which our own cast of Unthinkables attempts to influence us to make bad decisions when we are solving social problems. Garcia-Winner has also used her social thinking concepts to create a book for teenagers and young adults called Socially Curious and Curiously Social.
I have received permission from Ms. Garcia-Winner to work with the American Printing House for the Blind (APH) to make her series of social thinking books accessible to students with severe vision impairments or blindness. The project will take several years to complete. It will involve transcribing the Superflex comic books into Braille and will include tactile graphics and hands-on props for the various Unthinkable characters. It will also call for the creation of nonvisual alternatives for Garcia-Winner's intervention strategies and activities that are highly visual in nature. I am currently using Garcia-Winner's curriculum with groups of elementary and middle-school students at OSSB to address their social thinking skill challenges and develop ideas for the APH project.

DKS: Can you give an example of some of your adaptations to Garcia-Winner's social thinking books?

BP: Okay, here's one we've used at the school with kids in third to sixth grade. They had to work in teams. We gave them foam blocks and each team had to build a structure in five minutes. Every child on the team had to add two blocks to the structure. Sighted teachers also participated and some of them were placed under sleepshades. When we looked back at what happened, we saw how much the kids and teachers with sight took over. The students and teachers who were blind were often encouraged to place blocks at the beginning and afterward sat passively behind the other students. That exercise provided students and staff with an authentic experience for discussing such concepts as perspective taking, assertiveness, cooperation, inclusion, teamwork, and problem solving. Such hands-on experiences are exactly what our students need in order truly to make sense of and remember Ms. Garcia-Winner's social thinking skill concepts.

DKS: Talk about some of the things you're doing to give kids those opportunities.

BP: For the past five years we've been working with a program called SAVE, which stands for Strategies Against Violence Everywhere. Approximately thirty kids from the school are currently involved, from seventh grade through high school. The SAVE program teaches the students conflict resolution skills that they implement through creative arts experiences. The primary project is the creation of a video portraying how to implement conflict resolution strategies in dealing with real-life problems. Through the video, the students look at the conflict and apply thinking skills, coming up with alternative ways it could have been handled. Some of the kids in the program will be mentors to our elementary-school kids. The idea is to work toward becoming a peaceful community.

Art is another facet of the SAVE program. Recently kids made a mural around the theme "My Peace-Filled Place." Now we're planning to use this concept to make a quilted mural. The process of making the quilt is peaceful in itself. The quilt will communicate how students and staff are connected and mutually responsible for creating a peace-filled school community.
We also take the seventh- and eighth-graders each year to an adventure camp for a day in May. The students are given the choice of completing a high ropes course or doing hands-on activities in a wilderness setting. Both options teach and reinforce perspective taking, assertiveness, cooperation, inclusion, teamwork, and problem-solving skills. Adventure camp is a great teaching tool and confidence-builder as the students transition to high school. Every student who participates finds the experience to be highly meaningful.

DKS: Let's go back to the relationship between the blindness and autism communities. Tell me more about some of the collaboration that's starting to take place.

BP: An intervention planning system that's being used now by many professionals in the autism field is called the Ziggurat Model. A ziggurat is a five-tiered temple built by the ancient Assyrians and Babylonians. The five tiers of the temple were step-like levels diminishing in size, from a large foundation to a much smaller top level. The Ziggurat Model gives us a way to address all of a person's needs in a step-by-step format organized into five levels. When you think about a student, you need to look systematically. You need to identify his/her strengths and needs at each level in order to design effective interventions.

DKS: What do the levels consist of?

BP: The foundation consists of understanding the child's biological needs and sensory differences. It includes medical issues and processing challenges such as tactile defensiveness and auditory sensitivity. The next level looks at what we're doing to encourage a student to develop skills and reinforce those skills as they emerge. This includes such things as providing specific rewards only when the child exhibits specific targeted social behaviors.

The third level is tactile, auditory, and, when appropriate, visual environmental support. What kind of environmental supports can create a consistent and predictable environment? What supports can help the student get beyond rigidity in dealing with change? We need to create an understandable learning environment, building in supports to help the child learn effectively. Level Four is concerned with task demands. We need to understand the child's developmental level in order to provide learning tasks that are neither too easy nor too overwhelming. Level Five consists of prioritized skills for the individual, determined by the student's intervention team.

The Ziggurat Model encourages the educational team to look at the whole child and leads to a more meaningful understanding of what we're teaching. It's a way to help the child make sense of the world as you teach. Instead of starting out with teaching, you lead up to it. Instead of listing deficits the team identifies the student's developmental strengths and builds intervention ideas from there. It is a strengths-based model that gives the team a way to understand each child systematically, not to miss anything.

As I've said, this approach comes from the autism community. I feel it's a very worthwhile investment for our kids. It can be hard to understand our students when they come in with complex issues and the team needs a framework. I have worked with the authors who developed this system and there is sharing in both directions. They have incorporated a lot of our ideas. After listening to us, they've made some changes in what is on the Ziggurat. They have added auditory and tactile supports in Level Three. A lot of the things that help blind and visually impaired students are also helpful to sighted kids with autism.

DKS: What do you see as the future of work between the blindness and autism communities? Do you feel that the climate is right for other collaborative efforts?

BP: We haven't really bridged the gap, but at least we're interacting more. Overall, the autism community still doesn't get us. They tend to see blindness as a very separate issue, and we end up getting lost. There is a lot of great research going on. A lot of teaching strategies are being developed that we can tap into for students with severe vision impairments or blindness, but there needs to be serious thought about how to implement those strategies in nonvisual ways.

Actually this is a great time for professionals in the blindness and autism fields to connect. The Internet makes communication easier and more available than ever before. Professionals can build online communities for sharing ideas and developing best practices. Information sharing is still in its infancy. With time and commitment it can evolve in ways we probably haven't even imagined.

Right now we need people in the blindness and autism communities to reach out to each other. We have to find people who don't accept the status quo, who are willing to push the envelope of thinking. We need to get our ideas out to others around the country and overseas and to learn from what they're doing, too. Someone in Brazil or China may have discovered something valuable and we need to know about it. This is all about our kids. It's about wanting the best opportunities for all of them.

 

FRIENDS MAKE ALL THE DIFFERENCE

by David Thomas

From the Editor: David Thomas is thirteen and entering eighth grade. During the past year he lost his remaining vision and became totally blind. In this article he explains what helped him through that transition.

I used to have some vision, but I never had enough for reading large print. I could see certain things, but it was kind of tricky to figure out what I was really looking at. Sometimes I thought I saw something and it would turn out to be only a shadow. It's a retina thing. It can be pretty confusing.

When I was in kindergarten my friend, Sophie, and her family introduced us to the NFB. That year we went to the national convention and I got to see a lot of new things. I liked the convention because I met new blind people, including my friend, Vejas.

At the NFB convention of 2008 I met another new friend, Zach. I keep up with him and my other blind friends through Skype and phone calls.

I have spent two summers in the Buddy Program at the Louisiana Center for the Blind. I had the chance to work under sleepshades, and I learned how to do all kinds of things without trying to rely on my sight. I got much better at using touch and hearing to help me get things done.

In August of 2009 I had a cornea transplant, and the doctors tried some procedures to fix my retina. After a while I started to have a lot of eye pain. Then I had a surgery where they gave me a steroid shot to see if they could get the choroid body in my eye to make more fluid. It didn't work. They then tried to fill my eye with oil. After a couple of weeks the oil started leaking out and leaving a substance on my eyelids.

Last Thanksgiving my friend Zach told me he had had the same experience I was going through. He suggested I should think about having my eye removed. That was the only thing that helped him in the long run. The medical term for it is enucleation.

A few weeks later I lost the last bit of vision I had. I was still in a lot of pain because of all the problems with my eye. The doctor said that removing the eye was the best solution. I went home and talked it over with my family. Then I asked Zach about the process so that I wouldn't get nervous. After that I had the eye removed, and the pain was at an end.

I got an artificial eye, called a prosthesis, to replace the eye that was removed. Some people ask me if it was hard becoming totally blind. I don't think it was hard for me at all, especially because being free of pain was such a relief! My experience in the Buddy Program showed me that it's okay to be blind, and having friends like Zach made a huge difference. It really helps to talk to someone who's been through it and is doing fine.

 

A WALK ACROSS THE STAGE

by Doreen Franklin, Susan Harper, and Carol Castellano

From the Editor: The blindkid listserv, sponsored by the NOPBC and the National Federation of the Blind, is a forum that enables parents of blind children from all over the country to share experiences and exchange ideas. Recently Doreen Franklin, vice president of the Florida Parents of Blind Children, posted a letter she sent to the superintendent of her daughter's pre-kindergarten after a disturbing incident. A chorus of listers responded with much-needed support and suggestions for handling difficult situations in the future. Below is Doreen's letter, followed by two of the responses she received.

From: "Doreen Franklin"
To: "NFB Parents" <blindkid@nfbnet.org>
Subject: Daughter's Pre-K Graduation
Date: Friday, June 04, 2010 1:16 PM

Dear Listers,

I want to share a letter that we hand-delivered to our school superintendent today about our daughter's pre-K graduation ceremony. As you can tell from the letter, the occasion was bittersweet.
Doreen

Dear Superintendent ---,

I am writing about my daughter, Victorria, who is visually impaired and has attended the pre-K program at Eagles Nest. Her graduation ceremony was today. I am writing to tell you how upset my family was with the way Victorria was treated.

The ceremony started with a teacher leading Victorria using sighted guide technique. Torrie was set down on the floor to watch the photo review of the year with the rest of her class. She has low vision, and she was not able to see or recognize the pictures of herself and her friends. All of the other children were shouting out, "That's me!" They even shouted, "Torrie!" but Torrie could not participate in the festivity that her friends were enjoying. I wish so much that one of the teachers could have described the pictures to Torrie so she could take part in the fun! It was heartbreaking to sit there and watch Torrie unable to participate with her peers. I wanted to bring her over to me and go through the pictures verbally with her, but I knew she needed to stay where she was. (I have asked her teacher for a copy of the CD so that Torrie can watch the show at home).

As the ceremony continued, the children moved to the stage. Again, Torrie was led by the teacher to her seat. Her cane was nowhere to be seen. During the program, Torrie was led to a place on the stage to hold a sign. All of the other children were able to walk toward the audience during parts of the program, but Torrie sat still. We were so disappointed! Our daughter's disability was being hidden. By not letting her use her cane, the school tried to make her look like the other children, yet she was not doing the things that the others were doing. She was not walking toward the audience like her sighted peers. It was as though she were being taught to be ashamed of her disability and her cane. That is not what we are instilling in Torrie at home! We want her to be proud of who she is!

The diplomas were then given out, and the children shook hands with the teachers. Torrie walked across the stage without her cane. When I saw that, I gasped for my daughter's safety. After the ceremony, all the other parents got their children and took pictures of them on stage. But a teacher held Torrie by the hand and led her out of the auditorium, separating her from the group. My family and I were very disappointed. We have no pictures of Torrie on stage with her diploma.

Torrie is finally getting orientation and mobility instruction for use of the cane. In our last IEP meeting it was decided that she would not use the cane in her classroom, but that she would use it at all other times in school. She should have used her cane in the auditorium today. The other parents all know she uses a cane, and I don't think it would have mattered to anyone if her cane had been visible. If it had been on the floor beside her, she could have used her cane to move around like her sighted peers. Instead, her disability was concealed. Do you know the message that was being sent to Torrie? That message is that you cannot be yourself--you need to hide your disability by hiding your cane. What a sad lesson for our pre-K children!

This past weekend I attended a state convention for people who are blind and visually impaired. Everyone used a cane or guide dog. No one was ashamed of having a visual disability. These blind adults navigated an environment that was new to all of them--they had to find their way from the hotel check-in to their rooms and from their rooms to the restaurant and various seminar rooms. Several of these people were speakers who had to walk to the front of the room to give their speeches. None of these adults was embarrassed about using a cane or guide dog; instead, they moved throughout the hotel with confidence and independence.

I don't have the words to describe my feelings about the independence and assurance I saw in the people I met last weekend. I can hardly begin to tell you how I felt when I saw that my daughter was not allowed to use her cane, a tool that gives her both independence and safety! What a stark contrast!

I have been trying to be upbeat about the ceremony with my daughter, but it has been quite hard for me to hide my sadness. Torrie told me that she didn't need her cane on the stage. That is not a decision for a five-year-old to make. Whether she uses a cane is a decision made by her parents. We, her parents, have made that decision. It was reaffirmed by the IEP team after an orientation and mobility assessment clearly showed the reasons for her cane use.

Several members of our family wear glasses. We don't question their use or feel embarrassed by it. Torrie's cane is a part of her, just as our glasses are a part of us. How can we instill that message in her when the school isn't on board for the use of her cane?

Doreen

 

From: "Susan Harper"
To: "NFB-NET Blind Kid Mailing List
Subject: Re: Daughter's pre-K graduation
Date: Friday, June 04, 2010 6:34 PM

Dear Doreen,

We share your tears, not of joy, but of a moment Torrie and her family were robbed of. Her cane is a part of her, just as my glasses and my husband's hearing aids are parts of us. I hope that you will share this letter with Torrie's teachers and the school principal and superintendent. This is not a criticism of them, but a teaching moment. However, you will never recoup this memorable time in your daughter's life. All you can do is teach her to hold her head high, carry her cane, and go on.

There will be other moments like this. We have been the parents of children with disabilities for over ten years, and now we have a blind child. We feel your pain and pray for healing, not just for your family, but for all the folks who are ignorant about what it means to be different. Celebrate with your little girl and tell her she is a special person in your life every day. You are the best thing in her life. Don't stop advocating, and use this story over and over where it is needed to teach!

Please accept this big hug from our big family to you and your amazingly brave little girl. There are going to be dumssas (our word, and you can unscramble the letters) everywhere.

Blessings,
Sue H.

 

From: Carol Castellano
To: "NFB Parents"
Subject: Re: Daughter's Pre-K Graduation
Date: Saturday, June 05, 2010 12:36 PM

Doreen,

I am sitting here with tears in my eyes, having just read your letter about Torrie. These moments are so meaningful for us, perhaps even more meaningful than those same moments with our sighted children. So many of us have had to work very hard helping our children develop and fighting the system so that they get an equal shake.

I hope that the sting of this day subsides quickly. This experience will become your ammunition for doing things differently next time. We can just about guarantee that people--even those who know our kids and have worked with them--will sell them short on activities like this and will not share our utter PASSION for them to participate equally and fully. I'm afraid that the onus lies on us--and eventually on our kids when they learn to self-advocate. It is up to us to insist on equal participation and then to teach exactly what that means.

Though it probably does not feel that way now, this will become a crucial and incredibly valuable learning experience for you. Unfortunately, we cannot take it for granted that others will do the job right. I am sure it is difficult to view what happened in a positive light now--as in, better to find this out in preschool than in high school. So, now you know. For other school events, religious rites, Scouting activities, graduations, assume that you'll need to get in there early and teach. As Torrie grows older, include her in the planning--what do we need to tell these guys so that you can participate just like everyone else? In this way, you'll be teaching her what to expect and how to advocate for herself. Things won't be depressing or sad because she'll be informed and empowered. The day will come when she will be able to anticipate problem areas and do the teaching herself in advance.

Again, I hope the sadness dissipates quickly. Go on to the positive--this is a valuable lesson learned nice and early that you and Torrie will use well throughout her life.

Fondly,
Carol

 

HAVE CANE, WILL TRAVEL? HALFWAY AROUND THE WORLD!

by Amy Mason

Reprinted from The Student Slate, the quarterly newsletter of the National Association of Blind Students, Fall, 2009

From the Editor: Amy Mason has been an active member of the National Federation of the Blind of Nebraska for several years, as well as a dedicated member of Nebraska's student division. In the following article she describes her experiences on a missions trip to Kenya in May 2003.

"You know, Amy, you should look at doing a missions trip this summer." I only half heard my friend Dawn through my focused concentration.

"I will think about it," I said distractedly. I was involved in a video game and I really wasn't interested in conversation.

"I'm serious, Amy. Since you've signed up as a bivocational missions major, it only seems right that you get some experience."

It sounded as though Dawn would insist on an answer. "All right," I said halfheartedly, "I'll pick up some brochures during Missions Week and see what comes of them." I had no way of knowing that my absent-minded promise would change my life and my outlook forever.

Four months later I lay in my bed at Lake Aurora Christian Camp in Lake Wales, Florida. The dark, cool room was anything but quiet. I could hear people moving about in their sleeping bags, tossing and turning on their plastic camp-issue mattresses, and talking in the shower room. Several people were talking on their cell phones outside in the sticky Florida night. I had been out there myself not long before. I had called most of my friends and family, not knowing when I would get my next chance to speak with them.

Lying awake, I thought about what lay ahead. I was excited beyond belief. I was terrified, too. Tomorrow evening I would board a plane for England on my way to Kenya in East Africa. What would it be like? Would the people be friendly? Would I like the food? Could I manage to remain independent? Could I give my team and the Kenyan nationals a positive view of blindness? Could I be a positive example of Christianity? Would our work make a difference? Could I handle wearing skirts all summer long?

This was the last night of pre-field orientation before each one of us, the fifty missionary interns, left for our various learning and ministry experiences. Our teams would scatter all over the globe--to North Africa, Kenya, Malawi, Australia, Honduras, Bulgaria, and Russia. We would spend two months in our respective host countries.

The Kenya team was by far the largest. There were fifteen interns, three full-time missionaries from the States who had already spent a year in Kenya, and two nationals who worked with the program as missionaries to their own people. We were to help kick off a new program called Africa Hope. Its primary objective was to assist local churches in areas of growth, ministry, and teaching. The program was especially focused on educating people about the AIDS virus, which has devastated the African continent. We would be teaching the Maasai people in villages throughout the Narok region. The Maasai are semi-nomadic herders of goats, sheep, and cattle. That was all I really knew.

I had little time to ponder. The next morning we boarded the planes with a surprising lack of fanfare. We had already been away from home for a week and our parents were not there to see us depart. I could fill several articles with stories about international flying, but it is enough to say that Team Kenya arrived, cross and tired but safe, at its destination, twenty-four hours after taking off from the US.

My experiences in Kenya are too numerous to fit into one article. I will simply share three highlights that can give you an idea of the world I entered in May of 2003.

Climb Every Mountain

Welcome to Maji Moto! This village and those surrounding it are situated on the plains of the Great Rift Valley. A lone mountain rises from the plains, which are covered with short grasses and several types of thorny bush. Thorny trees and cacti as tall as trees are also visible in this area. The name Maji Moto means "hot water." It refers to the hot spring that flows constantly here. Zebras and gazelles are plentiful. Most of the people live in traditional Maasai homes made of mud and cow dung. The houses are low to the ground and rectangular in shape. However, several houses resemble one-room mud cabins with tin roofs, and there are even a few multi-room homes made of stone.

We arrived in Maji Moto as half a team. Our group was far too large for everyone to go to one village area, so we were split. My half got the cushy side of the coin. Wazungu, or white people, were not regular visitors, but frequent enough to be curiosities rather than complete anomalies. The hot spring was wonderful for bathing and for washing clothes. We stayed in a visitors' house that was very much like a rustic cabin in the woods. Halfway through our stay we had to move due to a misunderstanding. We spent the remainder of our time in the cement home of one of our national coworkers while he went and stayed with a bachelor friend. Both homes were quite comfortable. We had solar-powered electric lights, though we had to carry our water from the spring each day.

One of the highlights of our time at Maji Moto was the day that we decided to climb the mountain. It was the sort of mountain that is easy to hike, and we had a lovely day. We had a picnic at the top and ate chapatti, a flat bread like a moist pita, with peanut butter and jelly, oranges, and cookies somewhat like Graham crackers.

To be honest, I was feeling what Dr. Jernigan called "rebellious independence" that day. I was making my way up the mountain with the team but without assistance, even though most of my teammates were helping each other over the more difficult parts of the trail. I proved absolutely nothing but that I could be a big fool if I felt like it. I fell a bit behind on the way up the mountain, but not enough to cause a problem. I was pretty proud of my accomplishment.

The situation was rather different as we made our way back down the mountain. I was careful of my footing because most of the path was loose dirt, rocks, and dust. I was afraid of tripping on my skirts or getting in the team's way, so I moved more and more slowly. It got so bad that at one point I was most definitely holding up the entire group. Something had to be done. Stephen, a Christian national and the man who so generously lent us his house, decided he knew the answer. He would help me get down the mountain.

I dreaded the typically overprotective situation that I have so often encountered in the United States when people decide to be helpful. I gritted my teeth and prepared for the inevitable mollycoddling and manhandling. I figured that if Americans were overprotective toward blind people, in spite of all their education, this Kenyan man would be far worse. If I had been climbing a mountain in the States with only my fellow countrymen, I might very well have declined the offer of help and made my own way. But I knew that Stephen was trying to help. My refusal would only hurt his feelings and possibly damage my Christian witness. Dealing with people from different cultures requires diplomacy and a sensitivity to diverse points of view that must sometimes transcend our normal philosophical perceptions as blind Americans.

As it turned out, my worries about custodial tendencies from Stephen were completely unfounded. He grabbed my hand and we were off. The next thing I knew we were flying down the mountain at full running speed. We seemed to leap over the bushes, twist around trees, and eat up the distance. I never felt so alive! Suddenly we were at the bottom of the mountain with my teammates, skidding to a stop inches from a stream that snaked along in front of us. As we caught our breath, all I could do was laugh. It was an amazing feeling, and I had learned a valuable lesson. Americans have not cornered the market on positive philosophy about blindness, and neither have blind people. Stephen seemed to know instinctively that I was capable of far more than I believed I could do myself, and he proved it to me in the most expressive way possible. He pushed me to fly when I only believed I could crawl.

Home Management Class, African Style

"Lorna has invited you to come and learn how to make Maasai food today," Deanna announced to the team as we prepared for devotions in the airy house we shared in Narok between trips to the bush. "Let me know how many of you will be interested so we can set up a schedule."

As I picked up my BrailleNote and coffee on my way to read in the garden, I told her that I wanted to go. After I settled on the grass I took a moment to marvel at the wonders of technology. I was struck by the fact that I, a blind person, could carry an entire Braille Bible with me to the heart of Africa with no more difficulty or wasted space than a sighted person carrying a Bible in print.

Courtney and I were the only team members planning to work with Lorna that morning, so we headed out and walked together. We had been shown how to make chapattis once before, but I hadn't figured out the proper alternative technique for flipping it. I wanted to see if it might be easier in the modern kitchen that I expected Lorna to have. Expectations were almost always a mistake on that trip! Although she had a modern stove, Lorna was not going to use it to teach us about cooking chapattis. Instead, she used it to make ugali, a thick, pasty cornmeal cake that one shapes into a spoon-sized bowl for picking up stew or other wet foods. The chapatti, the rice, and the greens were to be cooked over the fire in the fireplace. The greens and rice were in pans on a metal rack, and the chapatti dough was on an iron griddle on legs. Lorna wanted to give us the full cooking experience.

I must admit that I have always had a fear of open flames. I never managed to learn to use a grill during my time at the Colorado Center for the Blind. I was stumped when Lorna handed me a spoon and a towel for lifting the lid of the pan and told me to keep an eye on the rice. After staring hesitantly for a few minutes I decided a better plan was to lift the lid with the spoon, which I thought was less likely to burn than the towel. After a while I became very proficient at this method, and I realized it would be effective in transferring the chapattis.

Once we had finished the rice and ugali, Lorna had me cut vegetables for a fresh salsa. While I was cutting veggies she taught Courtney to cook the greens and make the dough for the chapattis. After this she taught us the art of cooking them and gave us control of the griddle.

I greased the first chapatti with butter, flipped it, and did the same to the other side. Next I laid a second doughy circle on top of the first and greased it so that the two could be flipped together. This way the top would always be cool enough to be touched. I could remove the finished bread or flip it to cook the uncooked one beneath. This is actually how the Maasai, or at least Lorna, made the chapattis. I found that I only needed the utensil for greasing the dough and finding the edge of the griddle so I would not burn myself. Of course, like any novice cook, I burned my first couple of chapattis, as did Courtney, but the others came out well, and we all were satisfied. As the team sat to feast at the lunch table I realized that I was very grateful for my time at the Colorado Center for the Blind, where I learned to think on my feet and come up with creative solutions to new problems.

As the Shepherd Guides Them

In Olengata Entereat, the Place of Red Dust, I had a very different experience. Under a cool moonlit sky my team walked with Joshua, a Christian national and our interpreter for the night, to a large traditional village. When we arrived we climbed over the evening cattle-gate. About four feet high and five feet wide, it was built of thorny branches and logs. It was set in a fence of living and dead thorn trees.

We had visited this village before, during the day. We had spent a lot of time playing with the children, so we were not surprised to see a large crowd of them when we arrived. We were also greeted by many of the tall graceful women, and even by a few of the men of the tribe.

Foremost among our young friends was a boy we had nicknamed Batman, as he usually wore nothing but a cape and a smile. He began to play with my cane while we were singing. He was fascinated by the smooth fiberglass rod that was like and unlike the shepherd's staff he knew so well. Most of the children took their turns looking at and playing with my cane while we had tea and chapatti after the lesson, and the night seemed to go quite smoothly.

As we were leaving the village, Batman took the front end of my cane and tried to lead me by its tip. I gently but firmly removed it from his hand, as this is not the way it was meant to be used. Again we climbed over the gate. A couple of the women joined us as we left the village and began to walk toward the house where we were staying. Once again, someone picked up the end of my cane. It was getting to be a little frustrating, but I tried to explain through words and gestures how I used it. The woman seemed confused, but she let me sweep the cane in front of me as usual.

After the women left us Joshua pulled me aside. He told me that the women were not trying to cause problems. They were trying to help me use the cane in the way that they were accustomed to seeing it used. Here was a shocker! Apparently, in their culture, the blind person holds onto one end of a stick while a guide pulls the other end. In the United States, as we all know, to touch someone's cane is very offensive, and to lift it off the ground is enough to provoke serious wrath!

Joshua went on to tell me why blind people are led this way. Remember those thorny bushes? Remember your last visit to the park, where your cane jammed itself under the nearest bush or you managed to run headlong into a tree branch? This happens in Kenya too. The guide goes ahead to pick the path without branches and keeps the tip of the cane out of the deadly maw of the thorn bush while he is at it.

Once again I learned a couple of useful lessons. First, like so much else, blindness is dealt with in different ways by different cultures. Second, pulling my cane out of a thorn bush can be a lot more painful than pulling free of somebody's garden shrubs!

Homecoming

We were leaving. It was over. We had said goodbye to the missionaries we had worked with. Now we waited for our turn to board the plane. Each of us seemed to be in a contemplative mood. My mind turned to many different aspects of the trip. I thought of the friends we had made and how they most certainly had been good to us all. I remembered the skills I had learned. I thought of how I had grown as a person and as a Christian. I thought of the food and how much I enjoyed it--except for the sour milk that happened to be a staple of the Maasai diet. The thought made me laugh. Sour milk was offered as a sign of friendship and hospitality and could not politely be refused. I even thought fleetingly of how nice it was to wear pants again. Strangely, however, I didn't think about the impact my blindness had on the trip. In fact, I didn't think about it at all until much later.

I had begun the summer asking myself many questions. Two of those questions centered on blindness. Would my blindness be an issue? Could I be a good role model of blindness philosophy and practice? Those questions didn't even enter my mind as I left Kenya. I realized later that forgetting about those questions was a sign that all had gone well. I learned that in Kenya, as in the States, blindness was just one part of me. It was a characteristic that shaped my experience, but its influence was not as great as many others. This is the way that it should be. And so I remember the trip as nzuri sana-um--I mean, very good.

Author's Note: Olengata Entereat (Maasai for red dust) was the only Kenyan word for which I was unable to find proper spelling. All of the rest have been verified and are actual Swahili words.

 

My Fair Child

by Maureen Ryan Esposito
Reviewed by Connie J. Davis

From the Editor: Connie J. Davis is a former high school teacher and is the founder and moderator of the NFB albinism listserv. She is a longtime Federationist who lives in Chicago.

My Fair Child
by Maureen Ryan Esposito
Trafford Publishing, 2009
28 pages, $12.96

Author Maureen Ryan Esposito created this picture book to help children with albinism feel more comfortable with their condition. It was also written to help children without albinism gain an understanding of albino peers. Ideally it will reduce bullying and foster greater awareness. Esposito, who has albinism herself, drew upon her childhood memories and longings to write this book.

As the story begins, a mother tenderly tucks her albino child into bed for the night. Much of the book is a dream sequence in which the child journeys to a beautiful land filled with people and animals that are as fair-skinned as she is. Through the incorporation of other children with albinism into the dream, the book breaks down the isolation that albino children often feel. It conveys the message that they are not alone.

In the morning the child describes her dream to her mother. "Be proud of who you are," her mother tells her. "Let your love shine and hold your head up high, fair child of mine."

This book is a must-read for children with albinism and their parents, and a strongly suggested read for children without albinism. It gets two thumbs up and five stars from me!

 

LEADING THE WAY: THE 2009-2010 BRAILLE READERS ARE LEADERS CONTEST

by Natalie Shaheen

Twenty-seven years ago the Braille Readers Are Leaders Contest was established by the National Organization of Parents of Blind Children (NOPBC) and the National Association to Promote the Use of Braille (NAPUB). The contest aimed to promote the joy of reading for pleasure, to enhance pride in Braille as a literacy medium equal to print, and to demonstrate the importance of independent reading in the development of Braille skills. Contestants reported the number of Braille pages they read during a designated period. The winners were the students who read the highest number of pages within each age/grade category.

Today the contest pursues its original goals with an ever-increasing level of enthusiasm. This year participation in the K-12 contest reached an all-time high, with over six hundred students registered! The contest featured several new elements this year, including a Leader Board, team competition, and a contest for adult Braille readers.

Throughout the contest period (November 1, 2009, to January 4, 2010) participants could update their reading logs electronically on the Website at www.nfb.org/bral as often as they wished. At four secret dates throughout the contest, judges pulled the reading log data and the top three readers in each category in both the K-12 and adult contests were posted on the Leader Board. Participants whose names appeared on the Leader Board received an additional prize at the culmination of the contest. The Leader Board gave participants a means of tracking their competitors' progress and gauging their own performance against the page totals of their peers. Participants stated that they "picked up the pace" when they missed the Leader Board by only a few pages or lost the first-place slot to another contestant after holding it for a month.

As most athletes attest, the camaraderie that forms among team members is a powerful motivator. In this year's Braille Readers Are Leaders Contest, participants could compete as members of a team or as individuals. Teams consisted of as few as two and as many as five Braille readers. Teams competed for the honored title Braille Readers Are Leaders Team of the Year. The award was given to the team that demonstrated the best combination of team spirit and pages read. Teams could demonstrate team spirit in a number of ways, from the use of social media (Facebook and Twitter) to announcing team progress at NFB chapter meetings. The means of demonstrating team spirit was only limited by the participants' imagination.

Each of the teams that entered the contest showed great pride in its Braille reading skills. When it came time to determine a winner for the Team of the Year award in the K-12 contest, two teams stood out as excellent examples of teamwork--Team Believe to Achieve and the Braille Powerpuffs. As a result the award was given to both teams. Honorable mention was awarded to six K-12 teams: Team SMED, The Blind Mud Pie, The Fantastic 5, Metcalf Stars, NBCF Team, and Newark Braille Team.

For the first time adult Braille readers had the opportunity to join in the fun of the Braille Readers Are Leaders Contest. Adults competed in categories according to their Braille reading rate, measured in words per minute (WPM). Beginners read 80 or fewer wpm, intermediate readers read 80-160 wpm, advanced readers read 160-220 wpm, and advanced plus read over 221 wpm. In addition, sighted parents and teachers competed in a separate category. Well over one hundred adults registered for the contest.

Adult contestants, like their younger counterparts, had the opportunity to compete on teams. The Team of the Year Award in the adult contest went to The ABLE Group. The High Desert Dots team earned honorable mention in the contest.

Congratulations to everyone who competed in this year's contest. Keep burning through those pages; you don't want your fingers to get rusty over the summer! To view a complete listing of the Category and Special Awards winners in both the K-12 and adult Braille Readers Are Leaders Contests, visit our Website at <www.nfb.org/bral>.

It's never too early to start thinking about next year's contest. Who will be on your team? Is your state going to have a Braille Readers Are Leaders Contest kick-off or wrap-up party? If you need ideas about how to get a team started or how to encourage Braille readers in your state to get involved, please contact Natalie Shaheen at (410) 659-9314, extension 2293, or nshaheen@nfb.org.

Team Spotlight

The Believe to Achieve Team consisted of three elementary-school students: Noah Mondor (third grade, IN), Sierra Nicole Stewart (fifth grade, IN), and Gabriella Welsh (fifth grade, WI). Since the members do not reside in the same city, this team used a Facebook page to communicate with and encourage each other. The team acquired over two hundred fans through its Facebook page. In its essay the team noted, "If each 'fan' tells one person, who tells another person, who tells another person about the Braille Literacy crisis, we could be on our way to solving the problem."

The Braille Powerpuffs consisted of five students: Ashleah Chamberlain (fourth grade, VA), Alayna Hall (second grade, IN), Ellie Hardwick (fifth grade, VA), Mausam Metha (fourth grade, VA), and Shyanne Racey (fifth grade, VA). This group of young ladies used a Braille Readers Are Leaders Log to stay in touch. They attend various schools in various cities, so this was a great way to keep the team connected. Members wrote each other notes in the log, which they passed from one member to the next. Teammates also spent time reading to each other over the phone. In addition, the girls pulled in a high school student who is new to Braille to be their coach!

The ABLE (Access to Braille Literacy for Everyone) Group was formed in 2008 by members of the Blackhawk Chapter of the NFB of Illinois. Already dedicated to improving their Braille skills, the members unanimously decided to enter the Braille Readers Are Leaders Contest as a team. The five ABLE members--Robert Gardner (Beginner, IL), Lois Montgomery (Beginner, IL), Jana Hergert (Beginner, IL), Jean Rauschenbach (Beginner, MN), and Patrick Olson (Beginner, IL)--all learned Braille as adults. The team communicated via e-mail and met once a week during the contest period to read to each other. The team announced its progress at chapter meetings and encouraged other members of the chapter to dedicate time to Braille reading.

Below is the complete list of Braille Readers Are Leaders winners in the K-12 competition, arranged by category. The list includes the winner's name, state, and the number of Braille pages read. An asterisk (*) beside a winner's name indicates that he/she also won a trip to the 2010 NFB convention in Dallas, Texas.

In addition to the winners in the grade categories, which are determined by the number of pages read, this list includes Braille Readers Are Leaders winners in four other categories. Winners of the Community Service Awards used their Braille skills to help them perform a service to the community. Winners of the Jennifer Baker Awards met unusual challenges in their effort to learn Braille. These winners faced such challenges as language barriers or disabilities in addition to blindness. Winners in the Most Improved category are the contestants who show the greatest improvement in Braille skills over the past year. Those who won in the Twin Vision category are dual-media learners, students who use both print and Braille.

Grades K-1

* Christopher Abel, GA, 2,025
Kendra Holloway, GA, 1,583
* Caiden Hooks, OH, 824

Grades 2-3

* Alayna Hall, IN, 11,515
* Christian Adams, IN, 9,499
* Gabriella Orton, TX, 7,372

Grades 4-5

Annamarie Aqua, KY, 7,640
Gabriella Welsh, WI, 7,627
Gabrielle Nicholas, MT, 7,445

Grades 6-8

Lucas Leiby, PA, 9,172
* Merlyn Hileman, CA, 8,562
Roosevelt Thermitus, FL, 5,679

Grades 9-12

Bobby Townsend, KY, 12,531
Jonathan Wong, CA, 10,601
* Nicole White, NV 9,302

Community Service Awards

* Shelby A. Craig, 8th Grade, SC
* Omar Tzic, 7th Grade, NJ
* Jonathan Welscott, 7th Grade, MI
* Nicole White, 12th Grade, NV

Jennifer Baker Awards

* Kailey Christian, 4th Grade, VA
Caitlyn Higgins, 7th Grade, NM
Callie Marshall, 8th Grade, TX
Gabrielle Nicholas, 4th Grade, MT
* Rosanna Scott, 3rd Grade, AR

Most Improved Awards

Annamarie Aqua, 5th Grade, KY
Bobby Townsend, 10th Grade, KY
* Christian Adams, 2nd Grade, IN

Twin Vision Awards

Jazmin Castillo, 4th Grade, NM
Viren Desai, 2nd Grade, IL
Shelby Farley, 8th Grade, TX
Alexander Gamino, 3rd Grade, IL
Austin Shepherd, 4th Grade, MI

 

NEW NOPBC BOARD ELECTED

by Laura Weber

On July 5, 2010, the National Organization of Parents of Blind Children (NOPBC) conducted elections at its annual meeting. The following officers and board members were elected: president, Laura Weber (TX); first vice president, Stephanie Kieszak-Holloway (GA); second vice president, Carlton Walker (PA); secretary, Andrea Beasley (WI); treasurer, Pat Renfranz (UT); and board members Jean Bening (MN), Jim Beyer (MT), Wingfield Bouchard (MS), Carol Castellano (NJ), Lety Castillo (TX), Denise Colton (UT), David Hammel (IA), Zina Lewis (VA), Barbara Mathews (CA), and Sally Thomas (TX).

Congratulations to the new NOPBC board!

 

NEWS FROM FLORIDA

by Lenora Marten

Adventures in Blind Optimism, a Saturday program sponsored by the Florida Organization of Parents of Blind Children (FOPBC), started off with a bang! Meant to connect parents of blind children throughout the state, it has done just that and more. In September, we held a much-needed IEP workshop in South Florida. October found our children showing off their cane skills as they navigated through a giant corn maze. The IMAX Theater in St. Augustine welcomed FOPBC in January, showing parents and children what DVS technology is all about. Our children used special DVS headsets to listen to the Alps documentary. For some of them this was their first experience with audio description. In April, we joined the Greater Jacksonville Chapter of the NFB of Florida for a picnic. The picnic was a chance for us to give back to the blind community by feeding over one hundred people.

Immediately following our annual NFBF/FOPBC state convention, our children enjoyed a shark and penguin encounter through SeaWorld Ocean Discovery Adventures in Education. They had the opportunity to touch and learn about penguins, sharks, alligators, lizards, skulls, and even polar bear fur.

During the coming months we will participate in a Christmas in July event with the Daytona Chapter. In August you will find us at the Southeastern Guide Dog Center at an event created especially for our children.

Yes, we've been very, very busy in Florida! But that's not all. We're connecting families with local chapters while at the same time increasing Braille literacy. This program may still be in its beginning stages; however, it has already proven to be crucial. Fifteen students attended the first meeting of the North Florida Braille Club (NFBC), ranging in age from three to seventy-four. The group included five children, six parents, a grandmother, and four other chapter members, all with varying degrees of Braille knowledge.

I have to tell you that the most incredible thing happened at that Braille class. One of our blind teens was proficient in Braille and very sure that this class had nothing to offer him. Yet he turned off his Victor Reader Stream, set it on the table, and started paying attention. Then he walked over to where his blind mother and blind grandmother were sitting and began to assist them with their Braille exercises. I thought, Wow! This is what it's all about!

As we move forward toward 2011, we hope to add Braille clubs to the Central and South Florida Chapters, connecting even more families with blind adults. In the FOPBC we've got the blind and sighted working together. We have men, women, and children coming together to change what it means to be blind.

 

REPORT FROM TEXAS

by Laura Weber

In 2009 and 2010 the Texas Parents of Blind Children (TPOBC) pioneered several programs for blind children and their families. In 2009 we started a program called Braille Education and Skills Training (BEST). Our goal is to supplement Braille and cane travel skills, expand social opportunities, provide resources to help families learn Braille, and allow blind children to meet and work with blind mentors--all while having fun. So far we've had six activities, mostly in Houston. In 2009 we held a Braille Scavenger Hunt, adapted games, and went on a beachcombing excursion in Galveston. So far in 2010 we've held a Braille story time and crafts hour, baked cookies, and practiced our O&M skills on Houston's public transportation. TPOBC has sponsored two family activities in the past year, a fall festival and a spring picnic.

Goalball is another new TPOBC activity. TOPBC sponsored a new goalball team for kids in Houston. There have been six information sessions and practice games.

In 2010 TPOBC launched a new Teacher-of-the-Year Award. The first annual award went to Emily Gibbs, a teacher of blind students in Brazosport Independent School District (ISAID). Ms. Gibbs received a certificate and a grant of $600. The grant helped her attend the 2010 NFB National Convention in Dallas.

TPOBC board members welcome the opportunity to speak at conferences. Recently we addressed the Texas Division for Blind Services Workshop at the University of Houston and the Texas Association of Blind Students (TABS) Conference, also in Houston. TPOBC had a booth at the Texas Division for the Blind Foundation for Life Conference in Corpus Christi.

Currently our TPOBC database lists 234 families. We communicate with our members via our Website, than <www.tpobc.org>, and our listserv. Our TPOBC Google Groups listserv now includes 131 members.

To date, most TPOBC activities have taken place in Houston, since that's where the majority of our board members live. Recently we have started to hold some meetings and activities in Corpus Christi as well. Our goal is to hold meetings and organize activities across the state.

 

ANNOUNCEMENTS

NEW JOURNAL

Journal of Blindness Innovation and Research
<www.nfb-jbir.org>
The NFB Jernigan Institute announces the launch of the Journal of Blindness Innovation and Research (JBIR). The JBIR is a peer-reviewed research journal that will bring meaningful research into the mainstream of the blindness field. It will be available online free of charge. The main focus of the journal will be qualitative and quantitative research. There will also be sections for practice-based and philosophical pieces.

STUDIES

Research on the Brain
Marina Bedny
(617) 286-2341
mbedny@mit.edu
The Saxe Laboratory at MIT is studying how the brain develops in blind and sighted children. The researchers are seeking totally blind children between the ages of four and fourteen. During the study children will play games and listen to stories while noninvasive MRI images of the brain are taken. Children who participate will learn about neuroscience and will receive gift certificates and other small prizes. Out-of-state travel expenses for children and their families will be reimbursed.

DOCTORAL STUDY

National Leadership Consortium in Sensory Disabilities (NLCSD)
Tina Fitzpatrick
(215) 780-1501
<www.salus.edu/nlcsd/application.html>
NLCSD, funded by the U.S. Department of Education, Office of Special Education Programs, is accepting applications to doctoral programs in the areas of blindness/visual impairment, deafness/hard of hearing, and deafblindness. Full tuition and a minimum of $20,000 annual living stipend will be provided to NLCSD fellows for up to four years of full-time, on-campus study while they earn their doctorates at any of twenty-five consortium universities. Applications for the cohort beginning in fall 2011 must be received by December 31, 2010. Applicants will be notified by March 15, 2011.

SUPPORT GROUP

Hermansky-Pudlak Syndrome Network (HPS Network)
Donna Appell
(516) 922-4022
dappell@hpsnetwork.org
HPS Network is working with the Jewish Guild for the Blind to offer a support group to Spanish-speaking parents of children with HPS. HPS is one of the most common genetic disorders among people of Puerto Rican heritage. It is a rare form of albinism that can cause a bleeding disorder, digestive problems, and hardening of the lungs. The support group will meet via toll-free conference call.

BRAILLE

The 2010-2011 Braille Challenge
Braille Institute of America
741 N. Vermont Ave., Los Angeles, CA 90029
(323) 663-1111
<www.brailleinstitute.org/about_the_braille_challenge>
Registration Period: November 1–December 17, 2010
The Braille Challenge is an academic competition unlike any other. This two-stage contest is designed to motivate blind students to emphasize their study of Braille, rewarding their success with a fun-filled and challenging weekend of events. Students throughout the United States and Canada are encouraged to participate in the preliminary round. Contestants may take the preliminary contest challenge any time during the first two months of the year. Once the contests are scored, the top eligible students are invited to Los Angeles, where they match skills with the top Braille readers in the nation at the National Braille Challenge.

HELP NEEDED

Rick Colton
3881 Silver Spur Circle, Park City, UT 84098
(435) 649-4835 H or (435) 901-0803 C
With his daughters, Katie and Kristie, Rick Colton is providing assistance to the Pacelli School for the Blind in Surulere, Lagos, Nigeria, which serves students in grades K-10. Please send used canes and slates and styluses to Rick, who travels regularly to Nigeria. Your help will be greatly appreciated!

 

 

ODDS AND ENDS

NEW PUBLICATIONS FROM THE NFB

Go to www.nfb.org and follow the link under Products and Technology to Product Catalog, then use the Search box. 

Getting Ready for College Begins in Third Grade: Working toward an Independent Future for Your Blind/VI Child (Pre-K to Middle School)
by Carol Castellano
Catalog Number LSA110 (print)
National Federation of the Blind
200 E. Wells St., Baltimore, MD 21230
(410) 659-9314
This new book provides an approach to the development and education of blind/visually impaired children based on the concepts of equal expectations and the right to equal opportunity. A main focus of the book is how to keep the child's education on track and to create a remediation plan if things have gone wrong. Chapters cover such topics as academics, independent living skills, independent movement and travel, social awareness and social skills, and self-advocacy skills. The book encourages parents to look toward the future without fear and equips them with the information they need in order to raise their blind/VI child for an independent life.

Parenting without Sight: What Social Workers and Attorneys Should Know about Blindness
Catalog Number LBP36
This free publication provides introductory information to those potentially involved in assessing the competence of blind parents to care for children. The pamphlet promotes the view that blind parents are equal to this responsibility when they effectively use nonvisual techniques. Illustrated with color photographs, the pamphlet gives practical examples to show how blind parents handle everything from diapering an infant and giving medication to teaching colors and helping with homework.

OTHER PUBLICATIONS 

Message of Hope Christian Ministries
(866) 421-3066
message-of-hope@unityonline.org
Message of Hope provides the following services free of charge to the blind and visually impaired community: Daily Word Magazine and Daily Word Message of the Day on CD, in Braille, and via email; nondenominational, spirituality-centered literature in audio, Braille, and electronic formats; and letters of prayer support on cassette or in Braille.

Fire Protection Publications
Oklahoma State University
 JLavine@osufpp.org
Fire Protection Publications/OSU is a nonprofit organization whose mission is to be the fire service leader in producing high-quality, technically accurate, and affordable fire training and educational materials. FPP has produced several booklets in large print and contracted Braille, including Home Fire Safety for People Who Are Blind/Low Vision and Home Fire Safety for People Who Are Hard of Hearing. Several booklets in Spanish are available in large-print editions. FPP has also produced six print/Braille books on fire prevention for children. These books can be printed in uncontracted Braille on request.

Anne and Alex, 1996
VIEW International Foundation
<www.viewinternational.org>
With this title, VIEW International announces the launch of a new series of children's books. The books feature the adventures of two adopted children, one of whom is blind. This book is available for purchase as an electronic download.  (Go to Current Projects to locate a link to this book.)

MATH AND SCIENCE

Geometro
 info@geometro.net
 <www.geometro.net>
Geometro offers a hands-on system for teaching three-dimensional geometry. Sets of manipulatives include triangles, squares, pentagons, and hexagons. By joining the pieces with magnetic connectors, students can build a wide variety of structures. Workbooks (standard ink-print) are available at four grade levels (1-3, 4-5, 6-7, and 7-8). Geometro products are also available through the American Printing House for the Blind <www.aph.org>.

Discover a New World Microbe Models
 <wwwmicrobemodels.com>
Created by microbiologist Dennis Hill, these detailed models can help blind students deepen their understanding of viruses, algae, bacteria, and other microorganisms. Some ninety microbes are shown on nineteen plates. The microbe models are made of polyurethane plastic and housed in a maple storage case.

Sounds of the Natural World
Macaulay Library
Cornell Laboratory of Ornithology
159 Sapsucker Woods Rd., Ithaca, NY 14850
(607) 254-2404
 macaulaylibrary@cornell.edu
 <www.macaulaylibrary.org>
What was that strange sound you heard last night? Was it a screech owl? You can find out by visiting the Macaulay Library online. The library has amassed some 65,000 digitized recordings of birds, mammals, amphibians, and even fishes from all of the earth's continents. This site is a wonderful resource for students interested in learning to identify birds and animals by sound.

SOCIAL NETWORKING

Social Networking and You: Twitter, Facebook, and LinkedIn for Blind Users
National Braille Press
88 Saint Stephen St., Boston, MA 02115
(800) 548-7323
 <www.nbp.org>
This new offering from National Braille Press is designed to help readers understand social networking. It explains how networking sites can be accessed by blind users. The book is available for purchase in hardcopy Braille and electronic formats.

Facebook Tutorials for Screen Reader Users
<www.stacybleeks.com>
Created in May 2010, these free online tutorials are designed for users of Internet Explorer. Everything is doable from the keyboard. Topics covered are Facebook navigation, finding friends and sending messages, accessing your Facebook wall, and posting your Facebook profile pic.

AUDIO DESCRIPTION

<http://moviesfortheblind.com> - Established in 2007, this site posts the soundtrack of a film with audio description as a weekly podcast. Previous posts are available in the archives. Movies on the site are in the public domain, including some of the earliest "talkies" from the 1920s.

<www.blmicemart.com/assets/product_images/movies2.html> - The Movie Vault section of the Blind Mice Mart Website contains nearly two thousand movie soundtracks with audio description added. Available as podcasts for free download, films range from classics to last year's blockbusters.

<www.describedmovies.org> - Created by the Media Access Group at WGBH/Boston, this site lists hundreds of audio-described films that have been released in DVD and Blu-ray formats. The films are available for purchase from <www.amazon.com>.

<www.mopix.org> - This site provides information to consumers and industry members interested in learning more about motion-picture access. It contains links to theater chains that have incorporated a descriptive video system using headsets.

 <www.captionfish.com> - At this site a visitor can search by zip code to find local theaters that use audio description.

MAPS

Tactile Vision Inc.
6115 Edwards Blvd., Mississauga, Ontario L5T 2W7
(905) 696-8819
info@tactilevisioninc.com
 <www.tactilevisioninc.com/maps.php>
Tactile Visions, Inc. offers a wide selection of raised-line maps and atlases. Maps are produced on 11x11 or 11x17 inch paper, and some include color as well as tactile markings.

ClickAndGo Wayfinding Maps
In Touch Graphics
(212) 365-6902
info@clickandgomaps.com
 <www.clickandgomaps.com>

ClickAndGo Maps is a narrative wayfinding service modeled on the "directions" feature of Google Maps. ClickAndGo has taken this model and compiled additional nonvisual information to provide customized walking directions. Information is free for blind and deafblind users and is available online or by telephone.

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