The National Federation of the Blind Magazine for Parents and Teachers of Blind Children
Volume 27 Number 1 Winter/Spring 2008
Barbara Cheadle, Editor
ISSN-0883-3419
Copyright © 2008 National Federation of the Blind
For more information
about blindness and children contact:
National Organization of Parents of Blind Children
1800 Johnson Street, Baltimore, MD 21230
(410) 659-9314, ext. 2360
www.nfb.org/nopbc • nfb@nfb.org • bcheadle@nfb.org
Volume 27 Number 1 Winter/Spring 2008
CONVENTION
2008 Convention Bulletin
Remember the Past, IMAGINE the Future
by Barbara Cheadle
2008 Seminar Registration
Sponsorship Opportunity for the NOPBC 25th Anniversary Celebration
My First NFB Convention Experience
by Kathi Cassi and Maria Alvarez
2008 NFB Camp: It’s More Than Child’s Play
by Carla McQuillan
FEATURE
Equal Expectations: A Belief Paradigm or a Politically Correct, Feel-Good Phrase?
by Dr. Eric Vasiliauskas
PARENT POWER
Letting Go
by Maury Weedman
TECH-TALK
The Typing Tutor
LAWS AND LEGISLATION
Progress and Stalemates: The Complexities of Creating a Textbooks-on-Time System
for Blind Students
by Pat Renfranz, Sandy Taboada, and Jill Weatherd
EARLY YEARS
Devastated
by Amber Bobnar
OUR KIDS
Blind Inc.: My Life-Changing Experience
by Sarah Leon
Take That Summer Vacation Travel Tips from Moms of Children with Multiple Disabilities
by Jeanette Buttler and Martha Hack
EDUCATION
Encourage Hands-on Learning
by Mary Jo Thorpe
Extended School Year: What Does It Mean? Could It Be An Option For Your Child?
by Marcia Kelly
It Takes a Village—Iowa School Staff Help Turn Discards into Braille Teaching
Tool
by Art Stuchis
ODDS AND ENDS
For thousands of parents and friends of blind children, PARENT POWER means membership in the National Organization of Parents of Blind Children. The NOPBC is a national membership organization that provides vital support, encouragement, training, and information about blindness to members and to the broader community. As an affiliate of the National Federation of the Blind, the NOPBC is a bridge that connects families to blind role models and mentors. NOPBC is also a vehicle for expanding resources for parents, changing public attitudes about blindness, and creating greater opportunities for blind and visually impaired kids everywhere. Your NOPBC membership matters. NOPBC is a 501(c)(3) not-for-profit organization.
NOPBC Membership Application * Subscription to Future Reflections
Membership in the NOPBC includes membership-at-large in the NFB. Future Reflections is FREE and there is no requirement that you join the NOPBC to receive the magazine. If you wish to join the NOPBC and/or take advantage of the free subscription, please use the form below. (Please print)
Name(s) ______________________________________________
Date _______________
(Please include the first and last names of both parents if appropriate)
[ ] Parent(s)/caregiver [ ] Teacher [ ] Other
Address _____________________________________________________________________
City _______________________ State ___________ Zip_________ *Country ____________
E-mail ________________________________ Phone ____________________________
(Please designate if this is a home, cell, or work phone)
If you are parents, please include the following information for each blind/VI child in the family:
Name (first and last) of blind/VI child ______________________________________________
Birth date _________________ Sex: M [ ] F [ ]
Dues/donation. Enclosed is a check or money order made payable to the NOPBC:
[ ] $8 [ ] $15 [ ] $25 [ ] $50 [
] Other $_________
NOTE: One dollar per adult is counted as dues, the balance is a charitable donation.
I wish to receive Future Reflections in (check all that apply) [ ] Regular print [ ] Tape [ ] E-mail
This is a: [ ] New subscription
[ ] Change or correction:
Please print old or duplicate name and/or address as it appears on your magazine
label:
____________________________________________________________________
[ ] I do not wish to join the NOPBC. Please send me a free subscription to Future Reflections.
Mail to NOPBC, 1800 Johnson Street, Baltimore, Maryland 21230 U.S.A.
*International Subscribers: There is no shipping and handling fee for residents of the USA, USA territories, Canada, and Mexico. Residents of all other countries are asked to pay a fee in USA currency of $20 for a one-year subscription and $55 for a three-year subscription. Send checks or money orders made payable to the National Federation of the Blind. Enclosed: $______ shipping and handling for a (check one) [ ] One-year subscription [ ] Three-year subscription
The 2008 convention of the National Federation of the Blind will take place in Dallas, Texas, June 29-July 5, at the Hilton Anatole Hotel at 2201 Stemmons Freeway, Dallas, Texas 75207. Make your room reservation as soon as possible with the Hilton Anatole staff only. Call (214) 761-7500.
The 2008 room rates are singles, doubles, and twins $61 and triples and quads $66 a night, plus a 15 percent sales tax. The hotel is accepting reservations now. A $60-per-room deposit is required to make a reservation. Fifty percent of the deposit will be refunded if notice is given to the hotel of a reservation cancellation before June 1, 2008. The other 50 percent is not refundable.
Rooms will be available on a first-come, first-served basis. Reservations may be made before June 1, 2008, assuming that rooms are still available. After that time the hotel will not hold our block of rooms for the convention. In other words, you should get your reservation in soon. Guestroom amenities include cable television, coffee pot, iron and ironing board, hair dryer, and for a charge high-speed Internet access. The Hilton Anatole has six excellent restaurants, twenty-four-hour-a-day room service, first-rate meeting space, and other top-notch facilities. It is in downtown Dallas with shuttle service to both the Dallas/Ft. Worth Airport and Love Field.
The schedule for the 2008 convention will depart from what many think of as our usual schedule: Sunday, June 29 Seminar Day Monday, June 30 Registration Day Tuesday, July 1 Board Meeting and Division Day Wednesday, July 2 March for Independence and Opening Session Thursday, July 3 Tour Day Friday, July 4 Banquet Day Saturday, July 5 Business Session
Please register online at <www.nfb.org> or print legibly on this form or provide all the requested information and mail to the address below.
Registrant Name _______________________________________________________________
Address _____________________________________________________________________
City __________________________ State ____________________________ Zip __________
Phone ______________________________________________________________________
___ I will pick up my registration packet at convention.
___ The following person will pick up my registration packet: Pickup Name ______________________________________
Please register only one person per registration form. One check or money order may cover multiple registrations.
Check or money order (sorry, no credit cards) must be enclosed with registration form(s).
Number of preregistrations x $15 = ____________
Prepurchased banquet tickets x $35 = ____________
Total ______________
All preconvention registration and banquet sales are final (no refunds).
Mail to: National Federation of the Blind Attn: Convention Registration 1800 Johnson Street Baltimore, MD 21230
Registrations must be postmarked by May 31, 2008.
by Barbara Cheadle, President, NOPBC
How does one imagine the unimaginable?
Do you ever look at a new gadget or piece of technology and wonder how anyone came up with this idea? Do you ever read about some social practice from ancient primitive societies--such as abandoning newborn twins because (so it was believed) they are inhabited by evil spirits--and wonder how people could have ever thought this way? It is hard to imagine something new, either a physical thing, or different ways of thinking about people or the world around us.
There was a time when it made all the sense in the world to believe that the Earth was flat, and that evil spirits caused physical and mental illnesses. To suggest otherwise would invite being thought a fool, or worse, mad. Yet, astonishingly, history clearly demonstrates that the human race has a unique capacity to do this very thing: imagine the unimaginable.
Some of the greatest turning points in history were rooted in those moments when individuals or even small groups of people glimpsed a vision of something new, something different, something currently beyond their grasp. The unimaginable becomes a reality when an individual or groups of people pursue that vision and make it come true; consider Martin Luther King and the civil rights movement; Mohandas Gandhi and the non-violent movement to free India; Raymond Kurzweil and the invention of a reading machine for the blind; and Dr. Jacobus tenBroek who, with sixteen other blind men and women from seven states, founded the National Federation of the Blind.
I do not believe I exaggerate when I state that a turning point in the history of the blind was made twenty-five years ago on July 2, 1983, in Kansas City, Missouri, when parents of blind children made common cause with the organized blind and brought into being what would ultimately be known as the National Organization of Parents of Blind Children, a division of the National Federation of the Blind--the NOPBC.
From the beginning, the goals were bold and imaginative; the structure and premise new, fresh, and unique. Never before (so far as I know) had a national parents organization of children with blindness (or any other disability, for that matter) chosen to be guided and mentored by an adult organization of the same disability. Our affiliation was not to be a matter of lifeless words on paper, but a living, breathing, growing, and changing relationship--parents and their blind children interacting and partnering with blind adults.
On that day, we made the commitment to imagine together with the members of the National Federation of the Blind, a society where our children would be accepted as normal--with all the rights and the responsibilities that this implies--and given the same opportunities as all other children to achieve their potential and pursue their dreams.
As individual families and as an organization, we hitched our wagon to the
star of the National Federation of the Blind, and that decision has made all
the difference in the lives of thousands of blind children—some of whom are
now young adults. And now, after twenty-five years, it is time to pause, take
stock, reflect, take inspiration from our past successes, and consider what
it is that we might imagine for the future.
At the 2008 NFB convention in Dallas, Texas, the NOPBC invites you--and all
families and teachers of blind and visually impaired children--to celebrate
with us our twenty-fifth anniversary as we “Remember the Past, IMAGINE the future.”
The day of celebration will begin in usual style on Sunday, June 29, with workshops, seminars, and activities for every member of the family--blind kids and sighted siblings, too. Following a day full of active learning is an evening of relaxation; an informal buffet dinner with our families (kids included) and friends in the NFB; and an upbeat, inspirational, yet fast-paced program highlighting twenty-five years of accomplishments.
And don’t overlook your opportunity to be a sponsor! You can honor your special child or student, express your congratulations, or send a brief message about what NOPBC has meant to you for inclusion in the commemorative program. The sponsorship form with details is on page xx in this issue.
See the convention bulletin at the beginning of this issue for details about how to make room reservations at the convention hotel and how to register for the NFB convention (which is a separate fee from the NOPBC registration and a requirement in order to get convention rates). Of course, as in past years, the workshops and other activities on Sunday, June 29, are only the beginning of many NOPBC-sponsored activities scheduled throughout the NFB convention. Following is a schedule of events followed by an NOPBC preregistration form:
Day 1: Sunday, June 29
Childcare: The NFB offers childcare (NFB Camp) all day (except during lunchtime) on Sunday, June 29, and during other convention sessions throughout the week. Complete information, including fee schedule, age requirements, times available, and so forth, is available on page xx in this issue. Please note that preregistration for NFB Camp is required. NOPBC Fees including dinner tickets to the Sunday night, June 29, anniversary buffet: $25 per adult, $15 per youth, ages 12 and up, and $7 per child, ages 6-11. Children ages 5 and under, no charge. Tickets for the buffet dinner may not be available at registration, so PLEASE preregister. Preregistrations are due June 20, 2008.
NOPBC Fees, no dinner tickets: $20 per adult, no charge for children and youth accompanied by family members. Teens accompanied by chaperones, $15 per teen.
The fee helps cover the cost of workshop materials, the packets and handouts from all NOPBC sessions, AV equipment for our speakers, the cost of our Teen Hospitality Room, and other expenses incurred by the NOPBC at the convention.
8:00 – 9:00 a.m. Registration. Those who preregistered should pick up name badges, packets, and dinner tickets at this time.
8:30 a.m. NFB Camp opens
9:00 – 10:30 a.m. Remember the Past, IMAGINE the Future (general session beginning with NFB President Maurer’s famous Kid Talk session)
10:30 – NOON Breakout sessions. Seven concurrent 90-minute sessions for adults.
Children, ages 10 and up, accompanied by a parent or adult are invited to participate
in these sessions, too:
1. Getting Serious about Music Education: A hands-on look at the Braille music
code and music software for the blind student. Instructor, Jennifer Dunnam.
2. Getting Serious about Math: A hands-on introduction to the abacus. Instructor,
Annee Hartzel.
3. Touch, Sound, Movement, and Little White Canes for the Early Years (birth-5).
Instructor, Denise Mackenstadt.
4. Games—Think Outside the Box: Learn how to adapt board games, and which games
are blind-friendly right off the shelf. Instructor, Merry-Noel Chamberlain.
5. Blind and Multiply Disabled—Life after 21: Resources and tips to help parents
maximize their multiply impaired children’s opportunities for an independent,
productive life after they exit the educational system. Instructor, Barbara
Schultz.
6. Low Vision: Low Expectations? How you can help your low-vision kid learn
to use nonvisual techniques and develop positive attitudes to overcome subtle
and not-so-subtle messages of low expectations. Instructor, to be announced.
7. What Do You Do When You Meet 2,000 Blind People? Is this your first convention
and do you feel a little overwhelmed by all those canes and guide dogs? This
session conducted by blind member Angela Howard will give you a chance to ask
those “dumb” questions so you can relax, learn, and enjoy.
10:30 – NOON Teen Track 2008 (co-sponsored by the NFB Jernigan Institute): “Tonight on David Letterman—Educating the Public about Blindness.” Blind and sighted youth get a chance to go onto a “mock” David Letterman show and explain to the audience what it is like to be blind, or to have a blind family member. Coordinator, Mary Jo Thorpe.
NOON – 1:45 p.m. Lunch (on your own)
2:00 – 4:15 p.m. Sessions for children and teens according to age/grade levels. The children in grades K – 8 will have fun with the seminar theme, “Remember the Past, IMAGINE the Future,” as they learn more about themselves, blindness, and the skills of blindness through games, art, making Braille books, and other activities. Denver artist, Ann Cunningham, in collaboration with the children session coordinators, will be lending her talents to produce exciting, interactive projects and activities.
— Children, grades K – 2. Coordinator, Melissa Riccabono
— Children, grades 3 – 5. Coordinator, Ronza Othman
— Youth, grades 6 – 8. Coordinator, Gail Wagner
— Teen Track 2008 (co-sponsored by the NFB Jernigan Institute): Training
for the NFB American Gladiator. Recreational activities in partnership with
the NFB Sports and Recreation Division. Coordinator, Mary Jo Thorpe.
2:00 – 4:15 p.m. Concurrent workshops for parents. Two sessions: 2:00 – 3:00
p.m. and 3:15 – 4:15 p.m.
Session One: 2:00 – 3:00 p.m.
1. Early Years: Can I Be Your Friend? The development of social skills begins
in the cradle. Instructor, Heather Field.
2. Elementary Years: Technology and Blindness Skills. Like the chicken or the
egg question, we have to ask ourselves which comes first? Kristin Sims, Instructor.
3. Teen Years: From the Mall to College Campus. Preparing teens to travel in
all settings. Instructor to be announced.
4. Special Topics: Raising the Mobility Bar for Multiply Disabled Students.
Instructor, Denise Mackenstadt.
Session Two: 3:15 – 4:15 p.m.
1. Early Years: Listen—Your Little One is Trying to Tell You Something. Parents
have a lot to do with their children’s development of language and communication.
Instructor, Heather Field.
2. Elementary Years: Mobility: Making it Work in the Public School Setting.
Instructor, Denise Mackenstadt.
3. Teen Years: Fun, Friends, Fashions, and Fitting In. Instructor to be announced.
4. Special Topics: The Challenges of Home Schooling. Instructor Brunhilde Merk-Adam.
6:00 – 7:00 p.m. Family buffet, casual dress, bring the kids. (See NOPBC registration information on page xx for cost. Please note that tickets must be purchased in advance.)
7:00 – 8:00 p.m. NOPBC Celebrates 25 Years. Program with surprise awards, inspirational addresses, and highlights of NOPBC accomplishments (No fees, attendance at dinner not required).
8:00 – 10:00 p.m. Family Hospitality
8:00 – 9:30 p.m. Teen Talks: As in previous years, experienced, sensitive blind leaders are asked to conduct these two talk sessions on the all-important teen topics of dating, relationships with parents, social interactions with peers, and so forth. Moderators are experienced blind adults with extensive experience with children and youth. Parents are not invited. The session for boys will be led by Dan Wenzel and the girls by Christine Boone. For boys and girls ages 14 and up.
Day 2: Monday, June 30
8:00 – 10:30 p.m. Cane Walk: Session I: The Cane Walk is for blind kids, their family members, and/or teachers. It is sponsored by the NOBPC in partnership with the Professional Development and Research Institute on Blindness at Louisiana Tech University and the Louisiana Center for the Blind.
10:00 – 12:30 p.m. Cane Walk: Session II (repeat session)
10:30 – 11:30 a.m. Teen Track 2008: Orientation to the Convention for Teens, Teen Hospitality Room. Contact Brigid Doherty at the hotel for the hotel suite/location.
2:00 – 4:00 p.m. Demystifying Chemistry with Dr. Andrew Greenberg (University of Wisconsin-Madison) and Cary Supalo (Pennsylvania State University): Come join us as we explore the wonders of the chemical sciences. Using state of the art tools and techniques designed specifically for laboratory independence of blind and visually impaired students, you will run a series of fun and exciting chemical reactions. These safe and hands-on chemistry activities will highlight such topics as acids and bases, solution concentration, and nanotechnology. Included in the presentation will be an introduction from blind chemist Cary Supalo, a doctoral candidate at the Pennsylvania State University. Participants will be broken up into groups according to elementary, middle school, and high school levels, as well as a section for parents. Preregistration is required for participation. See NOPBC registration.
1:00 – 4:30 p.m. Teen Hospitality Room. Games, music, and socializing for all teens. Drop in anytime. Contact Brigid Doherty at the hotel for the hotel suite location.
7:00 – 9:00 p.m. Dad’s Night Out: This is an opportunity for fathers to talk about their kids in an informal, social atmosphere. Blind dads of sighted kids are also welcome to join the group.
Day 3: Tuesday, July 1
7:30 – 9:30 a.m. NOPBC Board Meeting
11:30 – 12:30 p.m. Teen Track 2008: Teen Meet and Greet with Division Reps: Come learn about the various divisions of the NFB.
12:45 – 4:15 p.m. Teen Hospitality Room.
1:00 – 3:30 p.m. NOPBC Annual Meeting and Program: Keynote address by 2008 NFB Distinguished Educator of Blind Children Award Winner and a program with continued highlights from the 25th Anniversary celebration. A brief business meeting with elections of officers and board members to follow.
4:00 – 5:30 p.m. Parent Power Workshop: Moderator Barbara Mathews. An NOPBC workshop about expanding and strengthening state and local parent groups, fundraising, developing programs, and recruiting members.
5:30 – 7:00 p.m. Braille Book Flea Market and Reunion for Braille Readers Are Leaders 7:00 p.m. Books on Time: Mobilizing the Troops for Action Despite considerable efforts over the past ten years, blind children still begin the first day of school without their books. Now is the time to educate and mobilize a force of advocates at the grass roots who will help us overcome this injustice. The session will cover how the law is supposed to work, how to assist families in navigating the complaint process, how to create change at the local level, and how to assist the NFB national office in tracking the problems with timely, accessible textbooks. More specific details will be available in the coming months about the specific time, location, and agenda for this important training seminar. Sponsored by the NFB Jernigan Institute in collaboration with NOPBC.
Day 4: Wednesday, July 2
7:00 – 9:00 a.m. NOPBC board meeting
Lunch break Teen Hospitality Room.
7:00 – 10:00 p.m. Teen Track 2008: Teen Dance: Want to go to a dance with your kind of music? Come get your groove on with other teens at the NFB Youth Track Dance. Teens 14-18 are invited. Music will include: Top 40, Hip Hop, R&B, and even country! There will also be games and time to chat.
6:30 – 10:00 p.m. Concurrent workshops for parents. Two sessions: 6:30-8:00
p.m. and 8:30-10:00 p.m.
Session One: 6:30 – 8:00 p.m.
1. All About Your Child’s IEP: Annee Hartzel, teacher of the visually impaired,
and Denise Colton, parent of a blind child. Hartzel also served on a committee
that developed state educational standards for Braille students in California.
Hartzel will review the basic principles of how to write an IEP, provide tips
on being an effective advocate in the IEP meeting, and so forth.
2. Drop-in Play and Learn with Heather Field: Parents of infants and toddlers
(ages 0-5) are invited to bring their kids to this hands-on interactive session
with Heather Field. Heather will answer questions and demonstrate toys and activities
to encourage development and age appropriate behaviors.
3. Letting Your Child’s Wild Side Out: Join us as we explore how young blind
children can enjoy fun, age-appropriate activities like surfing, skiing, snowboarding,
gymnastics, Frisbee, rollerblading, and much more. Both presenters will use
PowerPoint presentations with pictures and video of their blind children engaging
in all of the above activities. Warning: While supervised children of all ages
are encouraged to attend, be prepared for the consequences: they may very well
ask you when they can try these activities too! Led by Dr. Eric Vasiliauskas
and Grace Tiscareno-Sato.
Session Two: 8:30 – 10:00 p.m.
1. All About Your Child’s IEP: (repeat session) 2. Good Educational Programs
Are Built on Good Evaluations: this session will help parents and teachers learn
to identify the elements of good assessments. The workshop will identify sources
of assessments, how to develop and evaluate teacher-made assessments, and strategies
for identifying sources of independent evaluations. A panel of instructors to
include Dr. Ruby Ryles, Carol Castellano, and others.
8:30 – 10:15 p.m. Hobbies, Crafts, and Games: Supervised arts and crafts activities
for children ages 6-12. You want to go to an NOPBC workshop, but you have kids
who are almost too old for a babysitter but maybe not old enough to stay by
themselves, so what do you do? Bring them here for an evening of hobbies and
crafts! NOTE: This is a program for the children of parents who are attending
NFB workshops within the hotel. It is not a childcare service. Parents are welcome
to come with their child and do an activity together. Coordinated by Heather
Fields.
Day 5: Thursday, July 3
Time TBA Scout Open House: come learn about scouting from representatives with Boy Scouts of America and blind Federation scouts. More information forthcoming.
1:00 – 3:00 p.m. NFB Jernigan Institute Open House: Come to talk to Barbara Cheadle about the development of the Parent Outreach department of the Jernigan Institute and learn about other Institute programs.
1:45 – 6:15 p.m. Teen Hospitality Room.
8:00 – 10:30 p.m. Astronomy and the Invisible Sky: Come participate in hands-on activities to see what a night under the stars is all about. Weather permitting, we will also have an outside star party. Led by Noreen Grice of You Can Do Astronomy LLC and the Museum of Science, Boston. Kids of all ages, including blind adults and friends in the Federation, are welcome to attend. Children must be accompanied by an adult.
Day 6: Friday, July 4
Lunch break Teen Hospitality Room.
NFB Banquet Along with other NFB Divisions, NOPBC will announce the much sought after 50/50 raffle drawing
Day 7: Friday, July 5
NFB General Session *During the session, NOPBC will announce contributions to the White Cane Fund, tenBroek Fund, Kenneth Jernigan Memorial Fund, and Imagination Fund.
Carol Castellano, 1st Vice President. Married: Bill Cucco; two children: Serena (blind), age 24, John, age 21. Madison, New Jersey.
Brad Weatherd, 2nd Vice President. Married: Jill Weatherd; two children: Hannah (blind), age 15, Levi, age 13. Saratoga, Wyoming.
Carrie Gilmer, Secretary. Married: Phillip Richardson; four children: Joe, age 25, Kate, age 22, Jordan, age 17, Maya, age 10. Minneapolis, Minnesota.
Sandy Taboada, Treasurer (Dr. Sandra Merchant). Married: Joe Taboada; two children:
Michael (blind), age 15, Robert, age 13. Baton Rouge, Louisiana.
Mail to: Sandy Taboada, NOPBC Registration 6960 South Fieldgate Court Baton Rouge, LA 70808-5455
NOPBC Conference Fees
NOPBC Fees, including dinner tickets to the Sunday night, June 29, anniversary buffet: $25 per adult, $15 per youth (ages 12 and up), and $7 per child (ages 6-11), ages 5 and under, free. Tickets for the buffet dinner may not be available at registration, so PLEASE register early.
NOPBC Fees, no dinner tickets: $20 per adult, no charge for children and youth accompanied by family members. Teens accompanied by chaperones, $15 per teen.
Fee enclosed (make checks payable to NOPBC) $________________
Make checks or money orders payable to NOPBC.
You can either register for specific workshops online at <www.nfb.org/nopb>,
or request a hardcopy registration form.
Please check your choice: [ ] online [ ] send hardcopy
Adult Name(s). Please include first and last names of each adult and please
check relationship or interest in the NOPBC:
1. _______________________________________________________________________
[] parent [] relative [] professional [] blind parent [] chaperone for teens
[] other
2. ____________________________________________________________________________
[] parent [] relative [] professional [] blind parent [] chaperone for teens
[] other
Address ______________________________________________________________________
City __________________________ State________________________ Zip________________
Telephone(s) ____________________________ E-mail _____________________________
Do you already receive Future Reflections? [] YES [] NO
Are you a member of your state POBC chapter? [] YES [] NO
Is this your first NFB Convention? [] YES [] NO
Please list names (first and last), birth dates, and grades of all children attending the convention with you. Please include a brief description of the child’s vision and any additional disabilities.
Name Birth Date Grade Vision/other
1. ______________________________ ________ ____ _________________
2. ______________________________ ________ ____ _________________
3. ______________________________ ________ ____ _________________
4. ______________________________ ________ ____ _________________
by Kathi Cassi and Maria Alvarez
Editor’s Note: Kathi Cassi is the Ohio mother of a young man who became blind as a teenager, and Idaho resident, Maria Alverez, is the mom of a blind toddler. Kathi and her son Luke attended their first NFB national convention in Dallas, Texas, in 2006; it was also Maria’s first NFB convention. Here is what these mothers have to say about their experiences as reprinted from their respective state NFB newsletters:
by Kathi Cassi
Reprinted from the Fall 2006 issue of the Buckeye Bulletin, the newsletter of the NFB of Ohio.
My name is Kathi Cassi, but I would much rather be identified as Adam and Luke’s mom. We were content living a small-town life. Like all families we had our problems, but they were nothing we couldn’t deal with. Then my son Luke, who is now nineteen, began to lose his vision soon after high school. While in high school he excelled in sports and socializing. His biggest worry until then was that he and his friends, (many of whom he had had since kindergarten) were all about to go separate ways.
The doctors determined that his vision loss was caused by a disease our family
had never even heard of called Leber’s Hereditary Optic Neuropathy. The fact
that it is a mitochondrial disease that is passed from the mother added another
dimension to the horrific pain, shock, and sadness that I was feeling upon learning
my son was losing his sight. I felt extremely guilty. I also began to worry
about my other son, Adam. Would this terrible disease strike him? I went into
a mother’s mourning having lost such a precious part of my child.
As I rose from my despair, I was ready to fight. I found Barbara Pierce, and
she encouraged us to attend the national convention in Dallas. She also encouraged
Luke to consider going to the Louisiana Center for the Blind for adjustment-to-blindness
training. With much hesitation, not knowing what to expect, Luke and I went
to the NFB convention in Dallas. We hooked up with other Federationists in Cleveland,
and the welcome, fellowship, unity, and friendship never stopped. We have both
made life-long friends.
When we arrived in Dallas, Luke and I met his roommate for the week. I told this gentleman that he did not have to worry about babysitting Luke because he is very independent. Eric Duffy assured me that he would not babysit even if I wanted him to. After a while I almost wished I had persuaded him to make that babysitting commitment.
Luke may not always have gotten A’s in academic subjects in high school, but he always got A’s in “plays well with others.” Most of the time I could not keep up with him. I found myself knocking on the door or calling the room asking Eric if he knew where Luke was. After a while, when Eric heard my voice, he automatically said, “No! I don’t know where he is, and I don’t want to know where he is.”
Here are a few things I learned from the convention:
1. I learned that blindness doesn’t rob a person of his gifts. Luke can still
make friends as easily as he ever did.
2. I learned that I have taken life and vision way too seriously.
3. I learned that you don’t need pictures or souvenirs to carry home; the memories
are in your heart.
4. I learned that the most important things in life cannot be seen: God, love,
self-confidence, success, and joy.
5. I learned that our days are measured. Whether we enjoy life and what we do
with our time is our choice and in our power.
6. I learned that my son is going to be okay. He has tapped resources that he
never knew he had. His mind, heart, and soul are intact. He is strong and kind
and fun to be around. He holds his head high and carries and presents himself
with confidence.
7. The image of a hero you’ve spent a lifetime constructing can change in a
week or in the blink of an eye.
8. Stupidity, meanness, and lack of compassion are more blinding than the loss
of eyesight.
Thank you, National Federation of the Blind of Ohio; you taught me how to see. Luke is now attending the Louisiana Center for the Blind and reports that things are a little tough but certainly doable. I miss him terribly, yet I have great confidence that he is where he should be. This belief is reinforced each time he calls with his friends near by, eager for him to get off the phone.
by Maria Alvarez
Reprinted from the Fall 2006 issue of the Gem State Milestones, the newsletter of the National Federation of the Blind of Idaho.
The NFB convention in Dallas, Texas, was my first experience with the NFB. My name is Maria Alvarez and I have a son, Diamond, who is two years old and is blind. Being able to help him succeed in every aspect of life is my goal; I think any mother will go to extremes to help her children. The NFB convention was so inspirational to me. I met other parents, teachers, orientation and mobility instructors, blind lawyers, blind scientists, blind leaders, and many, many new friends. It allowed me to see about three-thousand blind individuals making their way through airports, hotels, restaurants, and more. I also had the opportunity to attend the parents’ division meetings and workshops and meet other parents with the same concerns that I had. Some of them had already gone through a lot of the same experiences as I had, and were so helpful in giving advice. I was understood in a different way by individuals who have overcome the same doubts and concerns I experienced. It was a comforting moment. I realized that I was not alone, and it empowered me to pass this on to others in my home state of Idaho. I am now committed to initiating a parents division for the NFB here in Idaho.
Some of the most inspiring moments at the NFB convention for me were witnessing the young (blind) students doing presentations. Wow! These young kids helped me to see what my son, Diamond, can become. They were so well-rounded, well-spoken, and not at all shy. When I think about it, it brings a knot to my throat and tears to my eyes. Before I attended the convention, I now see that I did have different expectations for Diamond because of his blindness. The convention helped me see that Diamond can be who he wants, and do what he wants; blindness does not need to define him, he will define himself. It was such an emotional experience and it is hard to express on paper. I wish every parent could go to the NFB National Convention and experience the power and empathy that flows throughout.
I want to thank Elsie Lamp for taking the time to talk to me at the Sensory Safari exhibition held at the Shilo Inn in Idaho Falls. I noticed there were NFB pamphlets, and I asked Elsie to explain to me what the NFB did. I had always thought it was only for adults. If it had not been for Elsie taking the time to talk to me, and then contacting Paula Achter, NFB President of Idaho, I would not have had the opportunity to attend the convention, and I am so grateful.
On June 29, 2008, the National Organization of Parents of Blind Children (NOPBC), a division of the National Federation of the Blind (NFB), will celebrate twenty-five years of bringing hope, inspiration, and practical knowledge about blindness into the lives of thousands of blind children and their parents. This celebration will be a part of our annual week-long family training conference. This conference brings together (from all over the country) blind children of all ages, their parents, other family members, and blind role models and mentors from the NFB to instruct and inspire them. Our anniversary conference theme—Remember the Past, IMAGINE the Future—reflects our commitment to always keep looking forward.
After our 2007 conference, Kim from Texas wrote, “As a parent, this was a life-changing experience…I feel an even stronger sense of hope, coupled with determination for my daughter [Kayleigh’s] future.” Another parent, Bonnie, from Georgia, said, “The hardest part of going to the NOPBC presentations was not being able to attend each and every class.” Lety, also from Texas, explained that when she and her husband first adopted their blind daughter, Kayla, they were “lost.” “Finally,” she said, “after seeking organizations to help me—as a parent—to better equip and teach my daughter, my search was finally over…being part of the NOPBC has truly been a life-changing experience.” But kids say it best. Ten-year-old Laura of Pennsylvania summed it up when she said about the experiences the NOPBC provided for her, “I learned it’s okay to be blind.”
Other NOPBC programs include sponsorship of the national Braille Readers Are Leaders contest; a preliteracy Braille program for toddlers and preschoolers; free canes to blind children under the My First Cane program; scholarships for blind children to attend summer enrichment programs; a pen-pal (Slate Pals) program that promotes friendships among blind and sighted students; state and regional workshops for parents; and distribution of Future Reflections, a quarterly journal for parents and teachers of blind children. For more information about the NOPBC, see our Web site at www.nfb.org/nopbc. Back issues of Future Reflections are available at www.nfb.org/nfb/Future_Reflections.asp.
We have accomplished much in our twenty-five years, and we are proud of it. But there is so much more to do. That’s why we are asking you for your support. Your gift of $25, $250, $500, $1,500, $5,000—or any amount—will help provide for a better childhood and a better future for blind kids like Kayleigh and Laura. According to the level of the contribution and/or the date we receive the contribution (see commitment form, next page), sponsors will receive recognition in our commemorative program, our Web home page, and/or in Future Reflections. The NOPBC is a 501(c) (3) not-for-profit organization. All contributions should be made payable to NOPBC and mailed to Barbara Cheadle, President, NOPBC, 1800 Johnson Street, Baltimore, Maryland 21230.
Thank you for your support! Together we can do more than IMAGINE a better future for blind children—we can make it happen.
(Mrs.) Barbara Cheadle, President
National Organization of Parents of Blind Children
Yes! We would like to sponsor the NOPBC 25th Anniversary Celebration!
[ ] Collegiate Level Sponsor $5,000
Corporate: Logo on lead banner in the NFB Imagination Fund 5K March for Independence
July 2, 2008; ad space in one issue of Future Reflections Corporate
& Family: Full-page ad or message in the commemorative program
[ ] Upper Level Sponsor $1,500
Half-page ad or message in the commemorative program and corporate ad space
in one issue of Future Reflections
[ ] Elementary Level Sponsor $500
One-quarter page ad or message in the commemorative program and corporate ad
space in one issue of Future Reflections
[ ] Primary Level Sponsor $250
A listing and ad or message of 50 words in the commemorative program
All corporate sponsors receive their name and a link on the NOPBC Web site throughout
2008.
Corporate or Organization Sponsors:
Sponsorship check (payable to NOPBC) enclosed: $________ OR check will follow
(date): __________
Contact Name: ______________________________E-mail: ____________________________________
Company/Organization: _____________________________________Phone:______________________
Address, City, State, Zip:________________________________________________________________
Individual Sponsors:
[ ] Friends and Family of NOPBC Are you now, or were you ever, a member of
NOPBC? ________
Sponsorship check (payable to NOPBC) enclosed:
[ ] $25 [ ] $50 [ ] $75 [ ] $100 [ ] $150 [ ] $200 [ ]See above [ ]Other ______
Name: _________________________ E-mail: ___________________ Phone:__________________
Address, City, State, Zip:_________________________________________________________
[ ] YES, I contributed $25 or more and would like to send best wishes to NOPBC and/or honor my child/student/parent with a line of 20 words or less in the commemorative program and Future Reflections.
Message*:
*Note: For families, we suggest the following format: John, Barb, J.E., Chaz,
& Anna Cheadle
Please mail the sponsorship form with check made payable to NOPBC or fax a commitment to:
Barbara Cheadle, President
National Organization of Parents of
Blind Children
1800 Johnson Street
Baltimore, Maryland 21230
Tel. (410) 659-9314, ext. 2360
Fax (410) 659-5129
bcheadle@nfb.org
www.nfb.org/nopbc
Programs and Activities: During convention week children six weeks through
ten years of age are invited to join in the fun and festivities of NFB Camp.
NFB Camp offers more than just childcare; it is an opportunity for our blind
and sighted children to meet and develop lifelong friendships. Our activity
schedule is filled with games, crafts, and special performances designed to
entertain, educate, and delight. If you are interested in this year’s program,
please complete and return the registration form provided at the end of this
article. Preregistration with payment on or before June 15, 2008, is required
for staffing purposes. Space is limited, so get your registration in early.
This year our complete registration packet will be available after February
15 on our Web site in Word format <mainstreetmontessori.org>. Complete
the entire packet and send it with payment by US mail before June 15th and save
time at convention.
About the Staff: NFB Camp is organized and supervised by Carla McQuillan, the executive director of Main Street Montessori Association, operating three schools, parent education courses, and a teacher-training program. Carla is the mother of two children and a longtime leader in the National Federation of the Blind.
Alison McQuillan—camp worker and teacher since 1998—will be our activities director again this year. Over the years we have recruited professional childcare workers from the local community to staff NFB Camp. Recently we have determined that recruiting from our Federation families results in workers with the proper philosophy and attitudes about our blind children. Carla and Alison will be supervising camp workers and all related activities.
Special Events: The children are divided into groups according to age: infants and toddlers, preschoolers, and school-aged children. Each room is equipped with a variety of age-appropriate toys, games, and books. In addition, school-aged children will have the opportunity to sign up for “Four Hours of Fun in the Stockyards.” Space for special events is limited. We are selling NFB Camp T-shirts this year for $10. Pre-order them to make sure we have your size (call or visit our Web site for an order form). On the final day of NFB Camp we will conduct a big toy sale—brand new toys at bargain prices.
Banquet Night: NFB Camp will be open during banquet for an additional fee, which includes dinner as well as entertainment: the Creature Teacher is going to be bringing six exotic animals for a learning and touching experience. Our animal collection will include an African bull frog, a hairless guinea pig, and a giant black African millipede.
Plenty of teens are always available to baby-sit during evening and luncheon
meetings. We will have a list of babysitters at the NFB Camp table at convention.
Completed form and fees must be received on or before June 15, 2008
Parent’s Name _________________________________________________________________
Address ____________________________________________________________________
City ________________________ State________________ Zip______
Phone ____________________________ Cell Phone ________________________________
Child(ren)’s Name(s)
________________________________________ Age________ Date of Birth______________ ________________________________________ Age________ Date of Birth______________ ________________________________________ Age________ Date of Birth______________
Include description of any disabilities or allergies we should know about: ___________ ______________________________________________________________________________ ______________________________________________________________________________
Who, other than parents, is allowed to pick up your child(ren)? __________________________ ______________________________________________________________________________
Per Week: $90 first child, $60 siblings
No. of children______ $_________ (Does not include banquet)
Per Day: $20 per child per day
No. of Days_____ x $20 child $_________ (Does not include banquet)
Banquet: $15 per child No. of children ______ $_________
_____Hamburger _____Chicken nuggets
Field Trip: $35 per child No. of children_______ $_________ (includes NFB Camp T-shirt-child size: S M L XL)
Total due $_________
We understand that NFB Camp is being provided as a service to make our convention more enjoyable for both parents and children. We will pick up children immediately following sessions. We understand that if our child(ren) does not follow the rules or if for any reason staff is unable to care for our child(ren), further access to childcare will be denied.
Parent’s Signature __________________________________________ Date ______________
Make checks payable to NFB Camp. Return form to NFB Camp, 5005 Main Street, Springfield, Oregon 97478. (541) 726-6924. <mainstreetmontessori.org>
NFB Camp Schedule NFB Camp will be open during general convention sessions, division and committee meeting day, and the evening of the banquet. The below scheduled hours for NFB Camp are tentative. The actual hours are based upon the beginning and ending of sessions, so that parents may drop off their child(ren) 30 minutes prior to the start of session and must pick up their child(ren) within 30 minutes from the end of session. On occasion, the end or beginning of session may be earlier or later than the agenda indicates. There is a $10 per quarter-hour per child late pick-up fee. NFB Camp provides morning and afternoon snacks. You are responsible to provide lunch for your children every day.
Date NFB Camp Hours
Sunday, June 29 8:30 a.m. – 12:30 p.m. and 1:30 p.m. – 5:30 p.m.
Monday, June 30 Camp is closed
Tuesday, July 1 8:30 a.m. – 12:30 p.m. and 1:30 p.m. – 5:30 p.m.
Field trip for elementary students
Wednesday, July 2 9:30 a.m. – 12:30 p.m. and 1:30 p.m. – 5:30 p.m.
Thursday, July 3 8:30 a.m. – 12:30 p.m.
Friday, July 4 8:30 a.m. – 12:30 p.m. and 1:30 p.m. – 5:30 p.m.
Banquet 6:30 p.m. – 30 minutes after closing
Friday, July 5 8:30 a.m. – 12:30 p.m. and 1:30 p.m. – 5:30 p.m.
You are required to provide lunch for your child(ren) each day. These times may vary, depending on the timing of the actual convention sessions. NFB Camp will open thirty minutes before the beginning gavel and close thirty minutes after sessions recess. Field Trip: “Four Hours of Fun in the Stockyards”
What does four hours of fun mean? It means a historic walking tour of the famous Fort Worth Stockyards, Cowtown, USA; a front-row seat to a live cattle drive, including one-on-one discussion with the herders; a tour of The Texas Cowboy Hall of Fame that has numerous restored covered wagons from different periods; and an amazing trip through the Cowtown Cattlepen Maze.
This trip leaves on Tuesday, July 1, and includes transportation to and from
the hotel, lunch, an NFB Camp T-shirt and the “Four Hours of Fun.” Tour departs
at 8:45 and returns at 3:00. Space is limited. We will fill spaces in the order
received. Note: registration must be accompanied with payment for consideration,
and priority will be given to children enrolled in NFB Camp. Children who are
not enrolled for the entire week of NFB Camp are welcome for a fee of $40. Sorry,
this trip is only for children 5-10 years of age.
by Eric Vasiliauskas, M.D. (“Dr. V”)
Keynote Address, March 2, 2007
California Teachers and Educators of the Visually Handicapped (CTEVH)
It is a pleasure to have the privilege to address you today, especially since CTEVH has had such a profound impact on our family, through what we have learned by attending the annual conferences and through the individuals we have met and interacted with over the years.
Our blindness journey began a little over ten years ago with the birth of our eldest son Vejas. Petras joined our family four years later. As our boys have grown, we have grown with them. In fact, I must admit that, despite all my schooling and training, this has been the most educationally intense and the most educationally rich decade of my life.
While I had heard educators in the blindness field and parents of blind children warn of the dangers of being overprotective, it wasn’t until our first CTEVH conference nine years ago, that I heard the term “equal expectations” for the first time. Dan Kish’s family was presenting a workshop and his father honed in on the concept of equal expectations. He emphasized that we must demand higher expectations of our blind youth, and that our kids need the skills to make it in the real world where they will not be given a break just because they have a visual impairment. They will not be given twice as much time as their co-workers to complete their projects. Once your child graduates, it’s survival of the fittest.
“Equal Expectations.” I must admit that, as a father, the first time I heard this catchy phrase my ears perked up and I thought “How refreshing! Now this is a philosophy I can identify with and aspire to.” During today’s presentation I will start out by sharing with you how our family has chosen to address the challenges associated with raising blind children and preparing them for life. I intend to be provocative and to challenge each and every one of you to honestly assess whether you indeed have equal expectations of blind children. While some of what I share with you and propose to you will undoubtedly be controversial, I sincerely ask each of you to listen to what I have to say with an open mind.
To start I would like to share some photos of our boys, and in doing so give you a better sense of where we are coming from philosophically and to our approach to raising our children. As you will quickly gather, it would be hard to call us overprotective. Vejas is now ten years old. He is fully mainstreamed and attends fourth grade at our local elementary school. In this slide we see Vejas on a field trip with his class onboard a sailing ship called the American Pride. Vejas helped hoist the massive sails, swab the ship’s tall-reaching masts, and he even had the opportunity to steer the ship for a stretch.
This is a picture of Vejas’s third grade classroom, which was intentionally configured to encourage maximum independence. On the right we see Vejas writing on his BrailleNote, which is positioned in front of his Perkins Brailler [not shown]. He places his reading materials on the clear plastic stand that sits over the Perkins. Once he completes his classroom assignment, all he has to do is pick up his BrailleNote, turn around, and take a few steps to the counter in the back of the classroom, and he then either prints or embosses his work (wirelessly, via infrared ports) and turns the assignment in on the spot with the rest of his sighted classmates. The classroom teacher has instant print and doesn’t have to wait for days or longer for someone to ink print his work. This also allows for more real-time feedback and avoids transcription errors that, even in the best hands, are bound to occur during the ink printing process from time to time. In second grade Vejas relied on his classroom aide to help with the cables. On the recommendation of the technology specialists from the California School for the Blind (<www.csb-cde.ca.gov/Documents/technology.htm>) who came down to assess Vejas in his classroom through the outreach program, we abandoned the cables by taking advantage of this simple wireless infrared technology. As a result, since third grade, Vejas has been able to independently do these tasks.
Petras just turned six a few days ago. He is fully mainstreamed in our local elementary school’s pre-kindergarten program.
Whether at home or on the road, both boys are expected to help out with chores and tasks. When we travel, Vejas and Petras both help haul the luggage. After all, it’s “Too much for Dad to do all by himself,” isn’t it? The boys help scoop out pumpkins and carve jack-o-lanterns every Halloween. From time to time they help prepare meals, desserts, or snacks like cookies, pudding, or guacamole. The boys help plant, care for, and harvest crops from the little garden in our backyard. In the left frame we see Petras carrying in a bowl of lemons he helped pick off the tree [not shown]. On the right, Vejas squeezes lemons with his cousins as they work together to make fresh homemade lemonade [not shown]. Here, Vejas and my wife Rasa are putting together a gingerbread house [not shown]. As you can see, Vejas has learned the secret that the chef never goes hungry. And, of course, the best fruit salad is the one you make from scratch yourself--or so says Vejas.
Our children help pick out food at the store, carry it into the house, pull items out of the grocery bags, and from time to time even put them away. Which reminds me, here is a parental O&M pearl: You know how tempted kids are to hold on to your hand when you are out and about with them? Well, if you have your child help you by carrying a bag or an item, he or she can’t grab your hand and so is forced to focus on his or her cane skills. Vejas has figured this one out and now asks me, “So, Dad, what are YOU carrying?”
Rasa Brailled the microwave in our kitchen so that Vejas can independently heat things up. Vejas has started clearing the table after dinner. Petras enjoys running the dishwasher by hitting the markers Rasa placed on the front panel. Time permitting, Vejas helps unload the dishwasher and put things away. Rasa used raised markers to make our clothes washer and dryer accessible as well. Petras enjoys loading and unloading the dryer. Here Vejas is using power tools to help me assemble his brother’s new bed [not shown]. Vejas in fact caught on a while back and, from time to time, will ask, “Dad do you really need my help, or are you showing me how to do this?”
My wife and I go out of our way to give our boys experiences that other sighted children have. As illustrated in this slide, this includes participating in birthday parties at the AdventurePlex gym complex, bowling, mini-golf, and even laser tag [not shown]. We take advantage of opportunities in the community to learn more about what our public servants do, whether it be climbing in a police car, flipping the switch for the siren, speaking over the car’s megaphone, hopping on an officer’s motorcycle, or trying on a heavy, well-insulated fireman’s outfit in the middle of the summer in Palm Springs. We enjoy tandem biking and flying kites at the beach.
Vejas and Petras are both little fish. They love the water and have both been taking weekly swimming lessons since they were three or four years old. Vejas is our family’s reigning whale-riding champion: last summer, despite three adults simultaneously performing cannonballs, we were still unable to dethrone Vejas from Shamu (an inflated killer whale). Vejas and Petras love water activities, including this 100-foot waterslide in Palm Springs and water parks, like Knott’s Soak City. Theme parks are always lots of fun for children and adults of all ages.
We try to take advantage of fun opportunities when we can. One weekend Vejas’s school held Dodger’s Day. We joined in the festivities at the ballpark. To give Vejas a better understanding of what was going on, I downloaded some general information on baseball, went to the Dodger’s Web site and downloaded information on each of the players, and then embossed and compiled this into a personalized program for him. We also brought along the Picture Maker Kit from the American Printing House (APH) to Dodger’s Stadium and with it I laid out the field to make it easier to explain what was going on. We did the same thing when we went to a Lakers game last year. As you can see Vejas even met some of the players, including Brian Cook and Luke Walton, who autographed his embossed program next to their Brailled names [not shown]. Movies are a lot of fun. We enjoy DVS videos at home and on special occasions go for the all-out full experience of the movie theater.
Both of our boys have been searching for the raised dots of Braille on book pages since about nine months of age. Here we see my youngest son Petras enjoying his favorite nighttime book, Good Night Moon, with his Mom. It is important to start reading early. Reading contributes to concept development. It is fun, is a great bonding time, and creates discussion points; and early exposure sets the tone that reading is exciting. Early introduction to Braille does NOT mean waiting until kindergarten, or even preschool. Literacy begins at home. If you spend some time at the Borders’ or the Barnes and Noble’s children’s section, you will notice that even the simplest of children's books includes print letters or words. Are our blind kids given equal access to Braille at the same age? The answer is simple: No. We need to get interesting Braille books and Brailed toys into the hands of our blind and low vision children before their first birthdays. When exposed early, kids search (look) for Braille in books before their first birthdays.
Both of our boys love stories. As you can see here, we are high-volume users of the Braille Institute Library <www.brailleinstitute.org> and the Kenneth Jernigan Library <www.actionfund.org/kjlibaps.htm>, both of which mail volumes of books every few weeks for the boys to enjoy. Our mailman gets quite the workout. When requesting specific books, we always opt for an electronic or embossed Braille version. We only ask for audiotapes when a Braille format is not available.
Vejas has been participating in the National Federation of the Blind’s (NFB’s) national Braille Readers Are Leaders Contest <www.nfb.org/nfb/NOPBC_Braille_Readers_Are_Leaders.asp> since he was in kindergarten. For pages to count in the contest, the children need to read the Brailled pages on their own. Tapes do not count. Participating in this contest in particular has been a truly rewarding experience. I literally get goose bumps thinking about how much progress Vejas has made in his Braille reading skills each year over the three-month contest period.
I must however caution each of you that should you read to your child and encourage literacy; you must be prepared to deal with the potential consequences. Let me elaborate with a real life example. Several summers ago, my family came along when I was lecturing at a medical conference in Hawaii. Disney’s Lilo and Stitch happened to début that very week. I was not particularly surprised when, after listening to the Read-A-Long audio book version of Lilo and Stitch, my ever-inquisitive, soon-to-be first grader asked, “Dad, what exactly is surfing?” I did my best to explain, already anticipating the question that soon followed: “So Dad, when can I go surfing?” Now I had met Cara Dunne-Yates and her parents when Vejas was only ten months old. As many of you know, besides being a mother and a Harvard law school graduate, Cara was a Paralympics tandem cycler and competitive skier. So I had a fairly good idea of what blind children and adults were capable of. In fact, inspired by Cara and other families we had met, I had even taken Vejas for a few runs down a ski slope when he was just three-and-half years old. Nevertheless, I must admit that I was caught a little off guard by his request to go surfing, and not being a surfer yet myself, did not know how realistic or safe it was for any child his age, sighted or blind, to go surfing. I let Vejas ride some imaginary waves at a luau the following night. Then I did what I imagine other parents might do and tried to punt this one by explaining that, unfortunately, we only had two days left and there wasn’t enough time to arrange for a lesson. As a compromise of sorts, the next morning we went boogie boarding and sea-kayaking. But as many of you know, kids are very perceptive. Vejas knew that boogie boarding, while fun, was not the same as surfing.
Well, as fate would have it, we decided to go on a real two-week vacation (no work) to Kauai the following summer. As soon as the airplane’s wheels lifted off the ground, Vejas stopped reading his book. He turned his head towards me and in a very focused fashion extended his hand to find my face and gently guided it in his direction with the clear intent of making sure he had my full attention. (I wonder where he learned that maneuver?) He then pointedly posed his question, a question that undoubtedly had been brewing ever since we began to plan this trip: “So Dad, when are we going surfing?” I reassured him that we would look into it once we got to Hawaii. After continued prompting from my persistent six-and-a-half year old, I arranged for an early morning surf lesson.
Here we see the surfing instructor, Miguel, working with Vejas on the shore. He is teaching Vejas auditorially and kinesthetically by having him practice over and over what he will need to know to perform on the waves. Miguel and Vejas then headed out into the ocean. I was assigned the job of catching Vejas once he reached the shallower water. I got my camera ready. To my amazement, on his first attempt, Vejas not only stood up but he assumed a near-perfect surfing stance as he rode his first wave. I was so excited I forgot to take a picture and cheered him on as he glided past me. I then watched him lunge forward as his surfboard implanted itself in a sandbar. I snapped out of my trance and rushed over to him. Instead of tears, he turned towards me and shouted “Dad, did you see me? I want to try that again!” Vejas had a second lesson with Miguel a few years later and he has had several additional formal lessons since then. I once asked him which instructor he thought was the best. “Miguel” he responded without much hesitation. When I asked him why, I was admittedly a little surprised by his insightful response. He said it was because Miguel paid the most attention to detail and had the highest expectations of him.
I have to admit that Vejas looked like he was having so much fun out there on the waves that it inspired me to take up surfing last year. And no, I don’t have any pictures of that--you’ll just have to take my word for it. But I do have a shot of Vejas and his own yellow surfboard with his cousins at the beach [not shown]. Now, Vejas not only surfs the waves, but the Internet as well.
We are avid users of the National Library Service’s (NLS) Web-Braille <www.loc.gov/nls/reference/factsheets/webbraille.html> system. In preparing for today’s talk, I was very excited when I stumbled upon Web-Braille’s child-focused search portal, NLS Kids Zone <www.loc.gov/nls/children/index.html>. And we love Bookshare.org <www.bookshare.org>. As of last week, there were 3,227 children’s books available via their Web site, and the number seems to grow weekly. As a parent, I submit that a Bookshare membership is among the best investments a parent, student, or teacher of blind students can make. If you don’t have one, go to the exhibit hall and sign up today. You won’t regret it, and you might even get a conference discount.
We get a variety of accessible children’s magazines. Cricket magazine arrives in the mail every month on tape. This is combined with National Geographic World Children’s Magazine which is recorded on side two. Vejas just started receiving Sports Illustrated for Kids audiocassettes a few weeks ago. Vejas looks forward to Brailled versions of Spider magazine, Stone Soup magazine, and Muse magazine <www.loc.gov/nls/children/magazines.html>. And both boys enjoy the new Squid Tactile Activities Children’s Magazine available through APH <www.aph.org>. Many of the Brailled magazines are also available in electronic format for downloading via Web-Braille. While this is nothing short of amazing, I would like to put forth a fatherly word of caution. Call me old-fashioned, but when downloading Braille magazines for children, I think that parental and teacher discretion and guidance is still advisable.
I have another example of the potential consequences of reading. When Vejas was in third grade, he read a book from the Jigsaw Jones series sent to him by the American Action Fund <www.actionfund.org/freebooksmain.htm> called The Case of the Snowboarding Superstar. Around that same time he read a story in Spider magazine about snowboarding. I’m sure some of you can guess what question this led to. That’s right--“So Dad, when can I go snowboarding?” I used to ski a lot in my younger days, but snowboarding became popular after I moved to Southern California. I have to admit that I wasn’t sure how to approach this one either. So I posed the question on NFB’s blindkid listserv <www.nfbnet.org/mailman/listinfo/blindkid> and got back some great leads. I was able to arrange for a snowboarding lesson with the adaptive skiing and snowboarding instructors at Big Bear Mountain <www.usarc.org>. The instructor guaranteed Vejas one thing: that he would fall; and he did. But he had a great time and some fun runs. Once again, my son inspired me to attempt something new. I actually gave snowboarding a try for the first time last week. To use an expression I hear my son and his friends use, it was “Extreme.” Petras was eager to join in the fun this year. He had such a great time during his half-day skiing lesson that we delayed our departure so that he could squeeze in another lesson.
As many of you may know, Rasa and I are of Lithuanian descent. To help maintain our cultural roots, both boys attend Lithuanian School for four hours every Saturday morning. In this extracurricular setting, as you can well imagine, our family does not have access to the same formal resources for the visually impaired that the boys have during the rest of the week. Yet, amazing as it may seem, the boys actually have access to the Lithuanian school curriculum to the same degree as their sighted classmates. Here, we see Petras in his Lithuanian kindergarten class [not shown].
This next slide shows Vejas in his first grade Lithuanian Saturday school classroom [not shown]. On the left we see him working off of worksheets that have been Brailled and modified by Rasa [not shown]. To the right of that we see Vejas Brailling out an assignment in class on his Perkins Braillewriter [not shown]. The transcribers and teachers of the visually impaired in the audience can appreciate the amount of time that goes into the Brailling and ink printing of all the materials for both boys.
A few years back, I met Joe Sullivan, the president of Duxbury Systems, here at a CTEVH conference. I still remember approaching his table in the exhibit hall and asking him if his program could be modified to accommodate Lithuanian Braille translation. He not only said it could be done, but offered to do this for us. There was an article awhile back in the Boston Globe that described Joe, as the “wizard” of Braille <www.boston.com/news/local/massachusetts/articles/2006/09/10/lost_in_translations>. I couldn’t have put it any more accurately. Let me show you why.
Vejas is now in fourth grade. We have modified his workspace in the Saturday school classroom to enhance independence. Here we see Vejas reading his Lithuanian textbook passage off his BrailleNote in class. Yes, believe it or not, the BrailleNote can be tricked into displaying Lithuanian Braille. You just need to make sure the voice feature is turned off to avoid hearing what sounds like complete gibberish. This year Rasa started Brailling out Vejas’s Lithuanian textbook passages ahead of time on our laptop into the Lithuanian template in Duxbury. I might add, she uses six-key entry, which she finds faster. We then save the documents as “brf” files and then transfer the files to Vejas’s CompactFlash card.
If you think that’s amazing, then hold on to your seats. Thanks to Joe Sullivan, we now have the capability for Vejas to complete his Lithuanian homework and class work assignments on his BrailleNote, which he saves as “brf” files. We then transfer these to our laptop, open the files with Duxbury, with a single stroke convert the BrailleNote-generated Braille to Lithuanian print, and turn the document in on the spot. It is much easier for Vejas to make corrections within his electronic Braille documents. Not to mention that, as assignments inevitably become lengthy at the higher-grade levels, think about how much time is saved by not having to ink print. Under my guidance Petras too has recently started dabbling with twenty-first century technology in Lithuanian Saturday school.
Let me share with you some additional marvels of the twenty-first century. To illustrate, here is a page from my son’s Lithuanian textbook. I can use OmniPage Professional to scan and then optically recognize the Lithuanian text. Then I proof the text on my laptop using OmniPage Professional’s built-in proofreading tool which is similar to spell check, and then make any additional needed corrections using the Lithuanian keyboard option which comes prepackaged as part of Windows XP. Next, I copy the corrected Lithuanian text, import it into the Lithuanian template I created in Duxbury, and then with a single keystroke translate the text into Lithuanian Braille, which can then be embossed or transferred to the BrailleNote via a CompactFlash card.
But wait. It gets even better. While we unfortunately don’t have access to a Lithuanian equivalent of Web-Braille or Bookshare, the World Wide Web now offers us new options. Bernardas Brazdzionis is one of Lithuania’s most influential patriotic writers. Every Lithuanian child has read his famous tale called “Meskiukas Rudnosiukas” which roughly translates to “Little Brown-Nosed Bear.” A few weeks ago, Vejas participated in a commemorative ceremony marking Rudnosiukas’s one-hundredth year birthday. Vejas asked if I could find him some background information on this author and poet. So naturally I Googled Bernardas Brazdzionis, and one of the links led me to this Lithuanian Web page: Vikipedija (you see there is no “w” in the official Lithuanian alphabet.) Unfortunately our JAWS screen reading program isn’t sophisticated enough to handle Lithuanian yet, but being the eternal optimist that I am, I am hoping for this capability in the future. For the time being however, I am able to copy the text, paste it into Duxbury, and--voila!--translate the text to Lithuanian Braille. This really is like a virtual magic wand isn’t it? By saving this as a Lithuanian “.brf” file, I was able to provide Vejas with reference material in Lithuanian that he could access on his BrailleNote to filter through on his own. This offers us the ability to broaden our children’s Lithuanian language exposure.
In the fall of last year, Vejas was invited to read at a special Lithuanian mass. As he gracefully read the Lithuanian passage with his BrailleNote, he projected an image of competence and confidence and turned quite a few heads, even the visiting Bishop’s. I submit that such moments help redefine people’s preconceptions of the abilities of the blind.
You might think that equal access in the church environment might also present a formidable challenge. Let me share with you how we have chosen to address this. It turns out that the selected daily readings and gospel passages used in our church can be found on a Webpage. By this point in the presentation, it shouldn’t surprise you to find out that every week I simply copy the text, and then go through the easy steps to make it BrailleNote-accessible.
I have made an arrangement with our church’s choir director. He e-mails me the list of songs that will be used for upcoming masses, and we then download or write these out ahead of time on my laptop. We save these as WORD files that Vejas can access and read with his BrailleNote during mass. Even if Vejas is reading the words for the first time (which is often the case) you would never know it. You see, Vejas reads Braille fast enough that he can sing along with everyone.
Though the Web is in its infancy, for a blind child it offers the opportunity to access useful information that can otherwise be hard to come by. When you go to a restaurant, what percentage of the time do you think they actually hand you a Braille menu upon request? In our experience it is not too often. An increasing number of restaurants are posting their menus on the Web. As long as they are not picture files, many are thus easily accessible. Before a recent visit to the Ragin’ Cajun in Hermosa Beach, I copied the menu from their Web site and pasted it into Duxbury so that Vejas could decide what he wanted on his own.
Yes, we have high expectations of our boys. We also have high expectations of our district’s educators and our VI professionals because, for our children to acquire all the skills they need to become truly independent and succeed to the best of their ability, they need to not only master the general education curriculum, but the whole host of compensatory blindness skills including Braille fluency, orientation and mobility skills, technology skills, social skills, advocacy skills, and the skills of daily living.
But what about when it comes to the academic setting? Based on nearly a decade of interactions with both general education educators and with VI professionals, I am too frequently led to wonder if “equal expectations” represents a true belief paradigm, or more of a feel-good politically correct phrase. Teachers, educators, and administrators, as a parent, I ask you, “What is your philosophy when it comes to educating my blind children?” Is your goal to have them “get by,” that is, to do well enough to at least be able to perhaps graduate from high school, or are you intent on doing your best to make sure they have the chance to reach their full potential in life and to really succeed? Do you have equal expectations of blind and visually impaired children? To help frame this discussion, I would like to pose a series of questions and then comment on each from my perspective as that of a parent who has dreams and high expectations for my children, who happen to be blind.
What do you expect of your Braille-reading students? Do you expect your Braille readers to read faster than, at the same rate as, or slower than their print-reading classmates? Let me share with you one first grader’s perspective. One day when I was with Vejas in his first grade Lithuanian classroom, he, in his usual form, finished his assignment before anyone else. I leaned over to let him know this and he whispered back to me, “Of course Dad, that’s because I have the advantage--Braille is faster.” I am proud to share with you that Vejas was formally recognized as the best student and most fluent reader and writer in his Lithuanian school class that year.
California is the first state to adopt formal Braille Reading Standards <www.cde.ca.gov/re/pn/fd/documents/braillereadstand.pdf> and Braille Math Standards <www.cde.ca.gov/re/pn/fd/documents/braillemathstand.pdf>. These standards have already served our family in very real and practical ways. However, while this is a definite step (or perhaps more appropriately--leap) in the right direction, unfortunately these standards do not include standards for reading fluency.
Let’s examine reading rate guideline data from the US Department of Education Web site that present the numbers of words per minute at which children read silently and orally during the elementary school years <www.ed.gov/teachers/how/tools/initiative/summerworkshop/mccabe/edlite-slide019.html> and middle school years <www.ed.gov/teachers/how/tools/initiative/summerworkshop/mccabe/edlite-slide020.html>:
| Grade Level | Words per Minute (wpm) |
|
Silent |
Oral |
|
| 2 | 70-100 | 66-104 |
| 3 | 95-130 | 86-124 |
| 4 | 120-170 | 95-130 |
| 5 | 160-210 | 108-140 |
| 6 | 180-230 | 112-145 |
| 7 | 180-240 | 122-155 |
Do you expect your Braille readers to be reading at the pace suggested in these guidelines? By the end of sixth grade, are your Braille students reading 180-230 words per minute? Are your third graders reading 95-130 words per minute? These numbers may seem a little high, so let’s look at the reading fluency benchmarks that our school district (Manhattan Unified School District) uses:
Grade Level |
District Benchmark (wpm with 95% accuracy) |
1 |
60 |
2 |
115 |
3 |
130 |
4 |
135 |
5 |
150 |
The third grade benchmark is 130 words per minute with 95 percent accuracy.
Some of you may be thinking, “Dr. V, that is wishful thinking,” because your experiences have taught you that the blind adults, teens, and children you work with do not read that fast. Some might direct me to the NLS Factsheet, <www.loc.gov/nls/reference/factsheets/braille.html>, which states that the average reading speed of blind individuals is about 125 words per minute. To put this into perspective, based on the data from the US Department of Education Web site, that is about the average speed that a typical sighted third or fourth grade child reads print. But it is likely that the Braille reading speeds are based on a mixed bag of individuals, many of whom started reading Braille later in life as teens or as adults.
Some of you would likely to point me to these standards which have been posted
on both the California Department of Education's Braille-n-Teach listserv <http://csmt.cde.ca.gov/helpFAQ.aspx>
and on AERNet, the Association for Education and Rehabilitation of the Blind
and Visually Impaired’s e-mail discussion listserv: <http://lists.aerbvi.org/pipermail/aernet_lists.aerbvi.org>,
numbers which are actually being used by VI professionals around the country.
Grade Level |
Reading Rate (wpm) |
|
Texas School for the Blind and Visually Impaired (TSBVI) Assessment Kit |
Michigan Scale |
|
3 4 5 6 9 High School Graduate College |
51 58 66 67 --- --- 115 |
30 --- --- 60 90 120 --- |
At the third grade level, in stark contrast to the 95-130 words per minute proposed by the guidelines on the US Department of Education Web site, or the 130 words per minute benchmark set by our school district, the Texas School for the Blind and Visually Impaired (TSBVI) Assessment Kit reportedly suggests that 51 words per minute is acceptable and even more shocking is the 30 words per minute benchmark put forth as adequate by the Michigan scale.
By the end of third grade Vejas was clocked at an oral reading speed of 182 words per minute with 100 percent accuracy. I only recently explained to Vejas that there are educators who believe that Braille is a slower reading medium than print. With utter disbelief, Vejas replied with, “But that’s ridiculous!”
Let’s examine the performance of some of the top young Braille readers in the NFB’s yearly National Braille Readers Are Leaders contest. In order for pages to count, the contestants need to read the Braille pages on their own (tapes don’t count). Take a close look at the accomplishments of some of our young Braille readers from around the country. Two years ago my then second-grade son read over 12,000 pages of Braille in three months, <www.nfb.org/Images/nfb/Publications/fr/fr18/fr05sf.htm>. Last year one of California’s second graders, Merlyn Hileman, who frequents this conference with her parents, read 16,316 pages in three months, <www.nfb.org/Images/nfb/Publications/fr/fr22/fr06sum10.htm>. Many of these young readers are reading thousands of Braille pages for pleasure. I assure you, these kids are not plodding along at 30 or 51 words per minute. Perhaps a key factor is that many of these children had been immersed in Braille before they started elementary school.
If you look at the readers in the NFB Braille Readers Are Leaders contests over the years, you find that the trend is towards more and more pages of Braille in each age category. Clearly, interesting Braille reading materials for children and adolescents have become much more readily available during the last decade from Bookshare.org, the NLS, the Braille Institute, National Braille Press (NBP) <www.nbp.org>, Seedlings <www.seedlings.org> and others. There are people who can read Braille at 200, 300, and some even over 500 words per minute. Individuals who learn to read Braille as adults tend to plateau out at much slower reading speeds, perhaps less than 100 words per minute. It is not appropriate to lump expectations for children who have been immersed in Braille from infancy with those of children or adolescents who start learning Braille later on--this is an important distinction, which seems to be overlooked when it comes to designing and interpreting norms. Many people believe that speed is influenced by practice. Given the dramatic increase in the accessibility of fun Braille materials, I would not be at all surprised that, if Braille reading norms were reexamined in an appropriate fashion, we would discover that the new rates, especially for those children with early Braille immersion, would be significantly higher than the norms currently being used by many educators.
What about your low-vision, large-print readers? Are they keeping pace with, or out-pacing, their sighted peers? How does their reading proficiency compare to their age-matched sighted classmates or the Braille-reading NFB Braille Readers Are Leaders contest participants we just looked at? Are your large-print readers struggling to keep up with schoolwork? How many are avid readers? How many actually enjoy reading for fun? If they must read, do they prefer to listen to books on tape? Are they, too, participating in reading contests? By high school, are they able to read hundreds of pages per week?
Are your Braille students keeping pace with their classmates when it comes to taking notes in class and completing their assignments? What about your large-print readers? How efficiently can they take handwritten notes in class? Are they as fast as their sighted peers? How legible are their notes when they need to review the information? Can they efficiently read their own notes without having to lug a CCTV everywhere?
In children with residual vision, Braille is not encouraged as much as it could or should be. I was heartbroken by a question posed to me by a girl in middle school who came to a workshop I was giving last year on Braille resources. She sat down in the front row and before I formally started, she raised her hand and asked me, “How do I convince my teachers to teach me Braille?”
She went on to elaborate. “I have some vision and my teachers make me use large print, but I can only see a few words at time on a computer screen. I just can’t keep up with my schoolwork and homework. I can’t even read my own notes without a magnifying device. I just don’t know what to do. I know I should learn Braille, but my teachers are unwilling to teach me. What can I do?”
Unfortunately this story is neither unique nor that uncommon. I have heard such stories many a time, including at this and prior CTEVH conferences. Just because a child can read enlarged print does not mean that that is the best primary learning mode for that student. The irony is that children who have some residual sight are frequently at a disadvantage because they often can’t keep up with their peers and may ultimately be less likely to be passionate about reading. Furthermore, it is important to remember that many conditions (even in children) are associated with progressive loss of vision over time, in some cases due to the underlying eye condition, in others from retinal detachment or glaucoma.
How fast can your elementary school students type on a Braille keyboard, be it a Perkins Brailler, Mountbatten Brailler, or an electronic notetaker? How does their speed compare with the QWERTY speeds of their sighted peers? The truth is that both my third grader and my sighted wife can Braille faster and more accurately than I can type on a QWERTY keyboard--and I type on my computer every day.
How fast can your elementary school student type on a QWERTY keyboard? Are they typing as fast as their sighted peers? The reality is that in 2007 and beyond, keyboard proficiency is a critical skill that blind children must efficiently master. Keyboarding becomes increasingly important as there is a move towards Internet-based learning modules in education. Typing has become an integral part of many jobs. It is needed to fill out Internet-based forms and job applications, do online banking, and to purchase items online.
In what grade do you introduce an electronic Braille Notetaker? Preschool? Kindergarten? First Grade? Second Grade? Third Grade? Fourth Grade? Fifth Grade? Middle School or Junior High? High School? In the year 2007, more and more children are starting to formally get exposed to Braille notetakers as early as kindergarten and first grade. Based on the California School for the Blind’s “Intro to the BrailleNote GPS” workshop I attended this morning, GPS training for our elementary school students is just around the corner as well. In fact, electronic Braille notetakers were one of the hottest topics of conversation between the second, third, and fourth grade finalists at the National Braille Challenge Invitational 2005 and 2006 <www.braillechallenge.org>. Do you know what the coveted grand prize in each age category at the Braille Challenge Invitational was last year, even at the youngest first and second grade levels? A PacMate. Now that is progressive!
When do you introduce a slate and stylus? I love the following story I read in the Braille Monitor <www.nfb.org/Images/nfb/Publications/bm/bm93/brlm9310.htm>. Kim Boshart in Nebraska started teaching preschoolers to write with the slate and stylus “because she didn't know they couldn't learn it” that young. Guess what? They did learn. How fast can your elementary school student Braille using a slate and stylus? My wife worked with a social worker that could take notes on a slate and stylus at the same pace as her sighted team members. We had wanted Vejas to learn the slate and stylus for several years now. Last June, our teacher of the visually impaired joined us at the Braille Challenge banquet. Vejas made a new friend and wrote down her contact info on his BrailleNote. But his new friend didn’t have a notetaker or a Perkins with her to get his contact info. I glanced over at our teacher of the visually impaired and in a friendly manner pointed out that that is why kids need to learn the slate and stylus. Fortunately, we can now point to the California Braille Reading Standards and say that it is part of our child’s academic curriculum.
Do you expect your blind or visually impaired elementary school student’s computer skills to be superior to, the same as, or inferior to their sighted classmates? In what grade do you introduce keyboarding, WORD, EXCEL, and PowerPoint? My children are mainstreamed and attend public school. In our local elementary school, beginning in kindergarten, all the kids attend Technology Lab once a week. Just like an increasing number of school districts around the state and country, the Manhattan Beach Unified School District has a formal district-wide technology curriculum defining what students should master by the end of each grade level, starting as early as pre-kindergarten. In our school district, kindergarteners and first graders focus on keyboarding skills, second graders work in Microsoft Word, and third graders are introduced to EXCEL and PowerPoint.
In fact Vejas, just like all of his sighted classmates, had to prepare a PowerPoint presentation at the end of third grade. He chose to do it on the Lincoln Memorial. He completed this with the assistance of JAWS and without ever touching a mouse. How is that for a wake-up call? This is not unique to our district. Keith Christianson, a blind teacher of the visually impaired who many of you know, introduces his second and third grade students to EXCEL. I have a patient who attends school in Yorba Linda. She asked me for some information on Crohn's disease that she could use for her third grade PowerPoint presentation.
Yes, technology is in our elementary schools and it is here to stay. Despite what VI educators may have been taught or may currently still be experiencing, the world has changed over the last few years. It is 2007 and technology has filtered down to the lower grade levels. This is a reality which will be increasingly more common. Rather that be reactive, I want parents and educators to be aware of this very real new trend, this new reality, so that they can proactively prepare to address the technology needs of their children and students rather than putting children in a position where they will progressively, perhaps even exponentially, fall further and further behind.
Do educators have equal expectations of blind children? If educators truly believe in “equal expectations,” then why is it that nationally only 45 percent of blind or severely visually impaired, but otherwise capable, students graduate from high school, compared to 80 percent of their sighted counterparts? (Data from the American Foundation for the Blind [AFB] Web site: <www.afb.org/section.asp?SectionID=15&DocumentID=1367>.) Why do only 16 percent of those blind or severely visually impaired students that graduate high school then go on to earn a college degree? Now granted one doesn’t need a high school diploma or college diploma to a get a job, but everyone should agree that advanced education certainly broadens one’s options.
Some may feel I am overreacting and claim that local outcomes are better. How
many of the Braille readers and large-print readers in your school system graduate
from high school and from college? How many have gone on to pursue postgraduate
studies, including law school, medical school, or PhDs? How does the performance
of Braille-reading students and large-print reading students in California compare
to the rest of the children taking the California state STAR exam? Where is
the actual data? Who collects it? How accurate is it? I am under the impression
that such education attainment statistics are not well tracked. Where is the
accountability? California state testing results are broken down by economic
status, gender, ethnicity, and the broad category of disabilities. The state
testing agency knows which students get Braille or large print exams. Why are
the performance results of blind and visually impaired children therefore not
examined and made available? Without accurate and current local district, SELPA,
or state-based statistics, how can parents be asked to “back off” and to put
their full trust in “the system”?
Employment status is a reasonable alternate measure of the fruits of the current
educational system. According to the AFB Web site, <www.afb.org/section.asp?SectionID=15&DocumentID=1367>,
less than half of low vision adults and only about a third of legally blind
adults are employed, and of that third, 93 percent of the employed blind read
and write Braille; only 7 percent don’t. We must also take into account that
these statistics focus only on employment status, that is, employed versus unemployed,
not on the type of job one is able to hold. As a parent who wants the best for
his blind children, I find these statistics sobering. We must all critically
examine the educational system performance hard data, the educational report
cards so to speak. The data suggests that at the schooling level there is a
huge discrepancy between the accomplishments of sighted and blind children.
From a parent’s standpoint, I must interject that this report card of the current
status of affairs is also not at all encouraging and is certainly not reassuring.
Let’s not forget orientation and mobility. How do the independent travel skills of your blind or visually impaired children compare to their classmate’s abilities? Are your ten-, eleven-, and twelve-year-olds able to safely and independently cross streets on their own? – Their sighted peers do. Do your ten-, eleven-, and twelve-year-olds have the skills to go to the hotel gift shop to pick something up for you? Their sighted peers can. How would they do if you asked them to go the neighbor’s house across the street to get you some sugar for a recipe? Can they find their way around a grocery store or the local shopping mall? Their sighted peers can.
Be honest, how many of your blind or visually impaired children passed this litmus test?
I would like to wrap things up by focusing on three concepts and by extending a few challenges to you.
1. STRIVE FOR EQUAL EXPECTATIONS. Blindness alone is not a reason to have lower expectations of students. Kids need to be given the chance to be the best that they can be. That won’t happen if the expectations of parents and educators are low. Too many kids are not getting the skills they need to make it in the world. That is a recurring theme at almost any conference. Please set the bar of expectations for our children at a high level. Children, and even adults, will rise or fall towards the expectation standards you put forth. I have in particular enjoyed and been inspired by lectures and articles by the following individuals who promote the concept of equal expectations: Dr. Ruby Ryles, Dr. Fred Schroeder, Dr. Karen Wolfe, Dr. Sharon Sacks, and Carol Castellano. At the beginning of each school year Rasa and I share some of their articles with the general education teachers and staff to help convey to them that they should have the same expectations from our boys as their classmates.
Parents and educators are responsible for making sure that, in addition to the traditional academic curriculum, blind and visually impaired children acquire the full complement of skills they will need to function in life confidently, to live truly independently, and to reach their full potential. When your children graduate from high school, they won’t have someone to arrange their things, to cook for them or shop for them; and they won’t be able to rely on predetermined travel routes to get from one place to another, or on a sighted human-guide to escort them from one place to the next. The Expanded Core Curriculum (EEC) <www.afb.org/Section.asp?SectionID=44&TopicID=189&SubTopicID=4&DocumentID=2117> and <www.tsbvi.edu/Education/corecurric.htm> is a set of guidelines put forth by the National Agenda <www.tsbvi.edu/agenda> intended to make sure that, by the end of high school, blind and visually impaired students acquire all the needed life skills, including appropriate social skills and blindness skills. The ECC needs to be elevated from the level of informal guidelines to a formalized state or federal policy, much like the California Braille Reading Standards and Braille Math Standards. To be an effective tool for blind children, the EEC needs to be given some teeth, so that parents and VI professionals can point to them as official requirements when convincing school administrators that working on activities of daily living, physical therapy, and occupational therapy really are part of the blind or visually impaired child’s educational curriculum. Please take the steps needed to make the EEC a powerful and influential resource.
Parents and educators may ask, “There’s so much to do. Where do we start?” This is a process; it doesn’t happen automatically. Is it achievable? Absolutely. My suggestion is for parents, educators, and the child to pick and agree to work on one or two goals every three months. The child needs to buy into these as well. Some goals will require more work and time than others, such as learning how to button a shirt, to tie shoelaces, or to use silverware properly. But each baby step that is accomplished brings the child one step closer to where we, and they, want to be. I submit that blindness itself is NOT the handicap, rather, not giving kids the appropriate Braille and other blindness skills creates the handicap--the handicaps of functional illiteracy and over-reliance on others. In my opinion this is further compounded by lower expectations on the part of parents and educators of our blind children than of age-matched sighted peers, and, I will add, low (to virtually nonexistent) expectations of parents by educators.
2. FAMILY INVOLVEMENT IS NEEDED. I encourage educators to synergize with parents and give parents the tools they need to help their child succeed. With all due respect, educators of the blind are fooling themselves if they think they can most effectively teach a blind child all the skills they need on their own without involving parents in the process. Here is a story problem. Let’s say for sake of argument that kids actually get ten hours of sleep a night. That leaves 98 waking hours during a week. If an itinerant teacher of the visually impaired spends one hour a day with a child, an orientation and mobility instructor three hours a week, and an occupational therapist and physical therapist ninety minutes each a week, and let’s assume that the blindness skills and concepts are actually actively reinforced the rest of the school day, that still means that the majority of the child’s waking hours are with the parents. Blindness professionals need to take advantage of the parental component of the equation, or you will fall short of the answer.
Teachers, if you want to have a real, long-lasting impact, rather than just leaving a footprint, leave a legacy with each child and family you work with. Teach your kids, and importantly their parents, how to “fish” for themselves. Empower parents by encouraging them to educate themselves in the matters of blindness and raising a blind or visually impaired child, by showing parents how to network with other parents, and by teaching them how to find and utilize resources on their own.
The theme of this year’s CTEVH conference is resources. I submit that every CTEVH annual conference is an overflowing cornucopia of resources and practical information that any parent could benefit from. It is my understanding that there are close to 6,000 legally blind students in California. I don’t see anywhere near 12,000 parents here at this conference. They are missing out. Teachers and administrators, I urge you to take the necessary steps to get the parents of your students to attend. I will go so far as to challenge each teacher to get at least one of the parents you work with to attend next year’s conference. The various organizations and SELPAs serving blind kids in Southern California should be encouraged to carpool families here next year. Be creative, perhaps a vendor could volunteer or be convinced to sponsor a prize to the group that gets the most parents to attend.
3. SUCCESS REQUIRES A GROUP EFFORT. Lastly, I submit that to optimally educate and prepare a blind child for life, the team needs to involve not only the child, parents, educators (both VI and general education), but a more direct interface with the blind community itself. My children’s accomplishments and successes are due to a team effort; a team that extends well beyond the bounds of our home and our local system. Parents and children need to be exposed to positive role models in the form of blind mentors and blind advisors. I respectfully suggest that every parent and blindness professional who works with blind or visually impaired children be open-minded and subscribe to Future Reflections, a journal in which blind adults, educators, parents of blind children, and even blind kids themselves share experiences covering a wide variety of topics pertinent to growing up blind and to raising a blind child. Most importantly, the articles are presented from a refreshing, positive, uplifting, practical, success-in-academics and success-in-life prospective.
I challenge every teacher of the visually impaired, every orientation and mobility instructor, every administrator, every student interested in a career as a blindness professional, and every parent of a blind or visually impaired child to spend an entire week at a national conference of the blind. I’m not talking about a conference that is specifically oriented towards teachers or parents, but a conference where virtually all the thousands of attendees are blind and where you participate in the activities and interact with blind people from all walks of life. The experience of immersion with the successful blind is sure to be a life- and perception-altering experience.
The reality is that the scope of skills that young blind children, as well as teachers of the visually impaired, and parents, need to master is ballooning. I respectfully submit that if indeed one really believes in age-appropriate expectations, then in all aspects of life, our blind children need to be encouraged to develop the same, or parallel, skills as their age-matched sighted peers.
I leave you with this last thought. What would you attempt to do (for your blind child) if you knew you could not fail? To really take advantage of this philosophy we need to reexamine our own current paradigms and become aware of what is possible. More importantly, the more we educate ourselves about blindness issues, the more we expose ourselves to the successful blind (and their parents), the more we come to realize that the boundary between what is possible for a blind individual and for a sighted individual is not all that much different.
by Maury Weedman
Reprinted from the November/December 2006 issue of VISability, a newsletter published by the Visually Impaired Preschool Services (VIPS) program in Louisville, Kentucky; <www.vips.org>.
Editor’s Note: Don’t be deceived by the brief nature of this little gem. It has a powerful message for moms and dads of blind children of all ages. Here is what Maury Weedman has to say about the importance of “Letting Go”:
My name is Maury Weedman and I am working part time at VIPS as a certified orientation and mobility instructor, a certification I obtained at the venerable age of fifty-six. My wife Pauletta has worked at VIPS for more than fifteen years. Our totally blind son Jamie was and is my inspiration for pursuing this field. He has attended college for two years and is currently enrolled in a challenging program at the Louisiana Center for the Blind. [Editor’s note: this is one of the three training centers for the blind in the United States operated by the National Federation of the Blind. The other two are the Colorado Center for the Blind and BLIND, Incorporated, located respectively in Colorado and Minnesota.]
Jamie has had to work very hard for his gains and has always done so with a “can do” attitude. He exudes positive energy almost all the time and is inspirational in nature. Nevertheless, Pauletta and I have invested untold hours in his development. In order to mitigate the impacts of blindness, the effort needed by parents is constant and exhausting, but worth every minute of it.
Even though at times frustration can take hold, the typical result of active parents is a very close relationship with their blind child. This is true for me. My bond with Jamie is powerful. But the time has come to let go. This is a wrenching experience with any child, but when there is a disability, a parent’s fears are more exaggerated. We have a tendency to stay in protective mode and thereby inhibit the independence of our children. If this impulse is not resisted a child may end up as a fifty-year-old with no life, few skills, and deceased parents.
Where possible we must give our children the gift of independence, and let them go into the world. This tendency to over-protect will always be with us, but we have to fight it. Even though Jamie is twenty-two and very capable, I have recently gone through probably my worst crisis ever related to letting go, but the result is that Jamie is becoming a young man who is setting his own course. What more can a parent do for a child? So, if as a parent you aren’t going through some fairly extreme anxiety from time to time over independence issues, you may be hovering a bit too close.
A review by the Access Technology Team of the International Braille
and Technology Center (IBTC) at the National Center for the Blind
In a world dominated by computer technology, touch-typing is critical and is set to remain a core skill for blind students. All four of the products reviewed below provide excellent methods for teaching touch-typing to blind learners using a PC keyboard. They come with multiple site licenses for school and educational institutions or may be purchased separately for individual use.
TypeAbility requires JAWS, while the other three typing tutors come with their own speech so no additional screen access software is needed. Of course the student will need JAWS or a similar screen access program, or a sighted assistant, to locate each tutor to begin with.
TypeAbility:
TypeAbility, available from <www.yesaccessible.com/typeability.html>,
is a typing tutor program which relies on JAWS for Windows screen access software
to make its accessible features come alive. In fact, without JAWS, there will
be no speech output. The program offers extensive options and training levels
and has been found by some teachers to be more flexible than other typing tutor
programs. It is available for $85 as a single installation, $220 for a ten-site
license, and $440 for a twenty-site license.
Targeted to younger students, TypeAbility presents the lessons in a playful,
childlike format. It provides immediate feedback if the learner presses an incorrect
key, with a gentle reminder of the correct key. The program comes with sixty-eight
default lessons, but more can be added by a teacher or parent. The program can
also be modified to cater to adult learners. Go to the product’s Web site for
a demo of the product.
Talking Typer for Windows:
Talking Typer for Windows, available from American Printing House for the Blind
(<www.aph.org>), costs $79 (without enhanced voicing) or $89 (with enhanced
voicing). This program is self-voicing and has various levels from which a student
can choose. It will tell the student what keys to press and then report back
whether the correct key sequence was pressed. Other options include speed tests
where the student increases his typing speed to receive feedback on how fast
and accurately he is typing.
PC Talking Typing Tutor:
PC Talking Typing Tutor, available from DeWitt and Associates at <www.4dewitt.com>,
costs $99 for a personal copy. It comes with speech and has similar features
to the Talking Typer for Windows program. A classroom version is also available
at $199, with an additional $49 being charged per student seat. This version
allows a teacher to use multiple profiles to track the progress of different
students.
Consisting of fourteen lessons, PC Talking Typing Tutor takes a student from
identifying the keys on the keyboard to advanced practice of his or her typing
skills. Each lesson contains various exercises, allowing the student to repeat
the items from the lesson. It also provides speed and accuracy testing in each
lesson. There are various options to change the look of the interface to accommodate
low vision. Depending on what speech is available on the computer being used,
the student may be able to choose different voices. The speed and pitch of any
available voice can be altered to accommodate user preference.
Talking Typing Teacher:
Talking Typing Teacher, available from MarvelSoft at <www.marvelsoft.com>,
is self-voicing and works in a similar way to the other typing tutors. Once
again, personal programs are available, as well as teacher’s versions that allow
an instructor to set up learning tracts for a student. Adults may want to turn
off many of the features to make the program friendlier and less childlike.
The student MarvelSoft product costs $104.95. The Talking Typing Teacher Pro
version, at $404.95, is network compatible and can serve up to thirty-five machines
from the one central (server) machine on which the program is installed. The
Pro version allows a teacher to teach up to thirty-five students at a time,
while centrally storing all the information, and it comes with an extensive
teacher kit.
NOTE: The staff at the International Braille and Technology Center for the Blind (IBTC) is able to review these competing products because this laboratory for the blind has a mandate to purchase one working model of all Braille embossers, along with other technology for the blind sold in America. Vistors who wish to personally compare rival products are welcome to do so during business hours and by making a prior appointment. The IBTC is located in Baltimore, Maryland, at the National Center for the Blind.
A Report by Pat Renfranz, Sandy Taboada, and Jill Weatherd
Editor’s Note: The authors of this report are parents of blind students
and active leaders at the national level within the National Organization of
Parents of Blind Children (NOPBC) and the National Federation of the Blind (NFB).
They are also well known as advocates for blind children within their respective
states of Utah, Louisiana, and Wyoming. This article comes out of a report written
as a textbooks-on-time committee assignment from the National Organization of
Parents of Blind Children (NOPBC). Here is what they have to say:
Many parents of blind children struggle with the knowledge that the general educational community seems to believe that it is acceptable for blind children’s Braille, audio, or other accessible formats of textbooks (and, by extension, other educational materials) to arrive chronically late--long after classes have begun. As parents, we--the authors of this report--have been told by our school authorities that late-arriving books are “just the way that it is.” At the NFB convention this past July in Atlanta, many parents from around the country attended an evening seminar sponsored by NOPBC entitled “Textbooks on Time: Update on NIMAS and NIMAC,” hoping to learn more about new methodologies for obtaining textbooks on time. This article grew out of a report on that session.
Getting Braille or other alternative formats of textbooks on time is the consequence of a long series of events, all of which must work in a timely fashion. Some events occur sequentially, and others occur on a parallel track. Some steps involve people with little or no appreciation for the time and effort required to produce textbooks in alternative formats, while other steps involve those with directly applicable skills, for example, transcribing and producing Braille. Here are some of the steps:
1. Textbooks for all students must be adopted according to individual state rules. In some states texts are adopted at the state level. When talking about textbook selection, such states are called adoption states. In this system local school districts (and sometimes individual schools) select which textbooks they will use from the state-approved list. Other states are considered non-adoption states. In these states texts are selected at the district level, or even sometimes school-by-school, from among all textbooks on the market. Textbook adoption comes in many flavors. School districts, in both adoption and non-adoption states, however, tend to adopt new textbooks every five to eight years.
2. Contracts for the purchase of texts are written, and states or districts purchase books as required by their schools.
3. Somehow this complex system of decision-making also involves individual teachers who, in varying degrees, play a role in deciding which books will be used in their classrooms for the following year.
4. At the district or sometimes local school level, the person in charge of ordering materials for a blind student must know which school the student will attend and each teacher that the blind student will be assigned to in the coming year. This person must contact each individual teacher to obtain a textbook list for his or her class. In many states or districts this task is assumed by the teacher of the visually impaired (TVI), but it may also be assigned to secretaries, administrative assistants, vice principals, or counselors. But let’s assume that it is the TVI. Once the TVI has the textbook list, he or she must check the student’s IEP to determine which formats are acceptable for which classes. ISBN numbers should be carefully checked, and, as the search for the textbook in the acceptable format begins, possible alternatives must be explored and identified as either acceptable or unacceptable. For example, if an older edition of a math textbook is available in Braille, but the more up-to-date edition the teacher will use is not, will the older version still be acceptable with minimal problems for the student and teacher?
5. The list of required textbooks and other required classroom books and materials is then cross-checked against various databases to see if the books/materials already exist in the required format. The TVI or someone else in the district or local school may be responsible for this, or it may be done by a centralized agency. In Utah, for example, the Educational Resource Center located on the campus of the Utah Schools for the Deaf and the Blind does this search. No one database is comprehensive, however. For example, the Louis database at the American Printing House for the Blind (APH), while extensive and the primary source of textbook listings (especially Braille textbooks), does not list the recreational or literary books available through the Library of Congress, National Library Service for the Blind and Physically Handicapped (NLS) system. Sometimes commercially available materials from organizations such as Seedlings Braille Books for Children, Inc., or the National Braille Press are listed with these databases, and sometimes not. And books that have been individually Brailled by school districts are probably rarely registered with these databases.
6. Decisions must then be made about where to obtain the accessible materials. Textbooks can be purchased from an accessible material producer (such as APH); borrowed from another school or an agency specializing in the desired format (such as RFB&D—Recordings for the Blind and Dyslexic); or produced in-state by the state resource center (if one exists), or on contract with, for example, a Braille transcriber.
7. After the search is completed and it is determined that one or more textbooks must be produced in the alternative format—Braille, recorded, or large print--then the order must be placed. Production complexity ranges dramatically depending on the type of textbook, when it was ordered, how many other orders the producer receives, how completely the district placing the order follows the instructions of the producer, and so forth. A book that requires many tactile diagrams, for example, could take many months to produce in Braille. A recorded book could be slowed down if the district sends the producer the incorrect edition or only one print copy of the text when two copies are required.
8. Produced materials must be shipped and delivered to the school. Shipments can be delayed, especially if they are shipped Free Matter for the Blind; shipments might arrive in the summer and be misplaced or lost before the school year starts; or the books might be shipped to the wrong school in the district. Braille textbooks are often cumbersome to store, an