Future Reflections
The National Federation of the Blind Magazine for Parents and Teachers of Blind Children
Vol. 25, No. 4 Convention Report 2006
Barbara Cheadle, Editor
ISSN-0883-3419
Copyright © 2007 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
CONTENTS
Vol. 25, No. 4 Convention Report 2006
BULLETIN
Atlanta Site of 2007 NFB Convention
FROM THE EDITOR
In this issue, or “It’s okay, Mom…”
REPORTS FROM DALLAS
2006 Convention Photo Report
Flea Market a Great Success
by Peggy Chong
My First Convention
Why We Come Back
COMING EVENTS
Fast Forward to the Future: Schedule of the NOPBC Events for
Families
and Teachers of Blind Children at the 2007 NFB Convention
March For Independence
What Your Teen Could Be Doing This Summer
by Karen Zakhnini
FATHERS SPEAK UP
The Power of Knowledge
by Eric Vasiliauskas
What a Parent has Learned from his Blind Son
by John Wai
AWARDS AND WINNERS
Joe Cutter Wins the Fredric K. Schroeder Award
What I Have Learned
by Gayle Prillaman
The 2006 Scholarship Winners
Distinguished Educator of Blind Children Award for 2007
by Sharon Maneki
The 2007 National Federation of the Blind Scholarship Program
Braille Slate Pals
The 2007 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, 2007. 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, 2007, 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 as soon as possible.
Guestroom amenities include cable television, coffee pot, iron and ironing board, hair dryer, and high-speed Internet access. The Marriott has several excellent restaurants. The hotel is currently undergoing renovations that will result in some alteration in the configuration of these. We will report on the changes as the convention draws near. It still features indoor and outdoor pools, solarium, health club, whirlpool, and sauna.
We strongly recommend preregistering for the convention itself online or by mail any time starting March 1 and ending May 31. The 2007 convention will follow what many think of as our usual schedule:
Saturday, June 30 Seminar Day
Sunday, July 1 Registration Day
Monday, July 2 Board Meeting and Division Day
Tuesday, July 3 March for Independence and Opening Session
Wednesday, July 4 Tour Day
Thursday, July 5 Banquet Day
Friday, July 6 Business Session
Learning that it’s okay to be blind falls into this same category. It can’t be taught, it must be nurtured. That’s what over one hundred families discovered first-hand this past July in Dallas, Texas, at the 2006 convention of the National Federation of the Blind. Don’t get me wrong; there was plenty of good teaching going on at the convention. The inspiring speeches, reports, and photographs in this issue attest to that. But the really defining moments--those moments when blind kids really got it--came about most often in the unexpected, unplanned experiences. Here’s an example of one such incident from the 2006 convention as described to me by a mom and her eight-year-old blind daughter at their first NFB convention banquet.
Although her daughter was a bit young to expect her to sit through a full banquet program, the mom was sure that her daughter would enjoy seeing the thirty blind scholarship winners receive their awards. And even if the child couldn’t understand the entire speech, the mom thought her daughter was mature enough to get something out of it. Throughout the day leading up to the banquet, the mom reported how her daughter had listened to the echoes of hundreds of canes tapping along the broad corridors of the huge hotel. The little girl was full of questions. Even for a bright child, the reality of so many blind people together was hard to grasp. Although she had occasionally been around other blind kids and some blind adults, she had never been in a place surrounded by over 2,000 blind people. Later that evening, as the banquet proceeded with door prizes, announcements, cheers, songs, rowdy laughter, and the buzz of conversation, it began to click into place for her. She turned to her mother and asked, “Is everyone here blind?”
“Almost,” her mother replied.
“Then you’re the only here who is sighted?”
“Not quite,” her mother replied, “but almost.”
The little girl paused as she thoughtfully considered this data. Then she leaned over and gently kissed her mother on the cheek and said, “It’s okay, Mom.”
When the mother told me this story, I thought I detected a little catch in her voice and mistiness in her eyes. I know my eyes were misty; even though I’ve heard variations on this story for as long as blind children and their parents have been coming to the NFB national convention--nearly three decades--it still amazes me what an impact the NFB convention has on even very young blind children.
As you read the speeches and reports from 2006, and review the exciting themes and plans for the upcoming convention in Atlanta, I challenge you to consider whether 2007 is the year for your family to attend. And if your child or student is also a high school teen, there is another 2007 summer event you will absolutely want to read about in this issue: the Youth Slam, sponsored by the NFB Jernigan Institute.
When it comes to creating an environment for blind children and youth to learn that it is okay to be blind, no one does it better than the National Federation of the Blind.
(knowledge – pity) + (skills x confidence) + blind role
models = self-determination
self-determination + (talent x perseverance) = SUCCESS
Is the task of raising a child an art or a science? Probably both. At the 2006 National Federation of the Blind National Convention last summer in Dallas, Texas, the National Organization of Parents of Blind Children (NOPBC) adopted a theme--The Equation for Success--from the world of science. With the help of dynamic, knowledgeable presenters and a wide variety of programs and activities for parents and kids, we explored together the elements of the equation that lead to success for blind children and youth. As always, parents also discovered that simply observing the thousands of blind people traveling independently about the hotel and doing all the normal things that people do at conventions was itself as valuable as all of the organized seminars, workshops, and activities combined.
The following photos and descriptions are highlights from the 2006 convention. Mostly, we have selected photos that depict the programs sponsored at the convention by the NOPBC. (As many people have observed, the NOPBC programs alone constitute a conference within a conference.) For a thorough overview of the entire convention, please see the August/September 2006 issue of the Braille Monitor. The issue is available on the NFB Web site at www.nfb.org (click on publications and select Braille Monitor). Also, back copies in print or alternate formats may be requested from the NFB Independence Market at (410) 659-9314, extension 2216.
The weeklong convention began on Saturday, July 1, a day set aside by the convention for NFB divisions to conduct seminars. And that’s where we begin our photo report:
Saturday, July 1
The NOPBC seminar begins with the annual “Kid Talk” with NFB President Maurer
seated on the floor with the children. His time with the kids centers around
the new Kurzweil–National Federation of the Blind Reader, dubbed the “Best New
Invention Ever” in the NOPBC agenda. Dr. Maurer shows them how the reader works,
then passes it around while he patiently answers questions and encourages the
kids to use their hands to examine the machine. “Lots of people don’t want us
to touch things,” he tells them, “but that’s how blind people learn. At this
convention, we want you to touch things.”
After the children return to their seats, Ryan Strunk, president of the National Association of Blind Students, kicks off the adult portion of the seminar with a keynote address about the “Equation for Success.” He begins the speech with the statement that, in regard to the equation in the agenda, “in fact, there are two other elements involved: improv [improvisation] and luck.” With frankness and humor, he explained that just before he came to the convention, he picked up some clothes from his dry cleaners and stuffed them in his garment bag. Unknown to him, the cleaners had removed the tags from his colored shirts (in his system, shirts with no tags are white) and gave him someone else’s dress pants. All of which he only discovered shortly before dressing for the seminar that morning. But, because he is flexible and has learned many problem-solving skills throughout his growing-up years--and with a little luck--he managed to put together a suitable outfit. Ryan continued to speak of his own experiences with sincerity and humor while delineating the components of the equation that combine to create successful blind adults.
Following Ryan Strunk, Eric Vasiliauskas, M.D., a pediatrician and parent of two blind sons, Vejas and Petras, speaks to parents on the topic, “The Power of Knowledge.” Who knew that Dr. V. (as he’s affectionately known) could turn such a dry-sounding title into a speech that moved many in the audience to tears? (This powerful speech is printed in its entirety elsewhere in this issue.)
After lunch on Saturday, Susan Osterhaus, a math teacher from the Texas School for the Blind, leads a standing-room-only workshop. As the attentive crowd looks on, Osterhaus describes math techniques, tools, tips, strategies, and resources for blind youth. The workshop is one of three topics in the middle school/high school strand. There were four workshop strands in all--early years, elementary years, middle school/high school and special topics--and three workshop titles per strand, for a total of twelve different workshops for parents and teachers.
Angela Wolfe, coordinator of the “Art with Feeling” afternoon session for children ages 8-12, poses for a picture as youngster Cindy Plac (El Salvador) displays her latest creation. Kudos goes to Wolfe for putting together and conducting this session at the last minute when the original program had to be canceled.
Matt Maurer, President Maurer’s brother, plays a Braille-related game with six-year-old Jasani Whitehead (Iowa) at the Braille Carnival. The Braille Carnival was reorganized this year into smaller, multiple sessions in order to provide more individual attention to each child.
In “Talk About It Theater,” coordinated by Carrie Gilmer, kids tackle difficult social situations they may encounter in their daily lives. Through a skit they create, then act out, these blind and sighted youth learn how to react to ignorance and misinformation about blindness.
Instructor and mentor, Barbara Pierce of Ohio, and Dasha Radford, age 10 (North Carolina), quickly become close-“knit” friends at the knitting workshop for kids ages 8-12.
Jimmy Cale and R. J. Crease of Indiana are intrigued at the prospect of trying out newly developed lab tools for blind students during the “Chemistry: Seeing Color Through Sound” program for teens. Organized and conducted by Andrew Greenberg of the University of Wisconsin at Madison, Nanoscale Science and Engineering Center, and blind chemist Cary Supalo of the Independent Laboratory Access for the Blind (ILAB) project, this workshop was one of three afternoon sessions offered to teens in collaboration with the NFB Jernigan Institute, Center for Blind Youth in Science.
The chance to get together with other teens to share experiences is a convention plus. While parents and younger kids relax and enjoy socializing Saturday night at Family Hospitality, teens talk about issues concerning dating, relationships with parents, social interactions, and more at Teen Talk, a regular NOPBC-sponsored session just for teens. Throughout the convention, NOPBC also offers a safe, supervised hangout environment at the Teen Hospitality room.
Sunday, July 2
Orientation and mobility instructor, Roland Allen of Louisiana, teaches nine-year-old
Nautica Whitehead of Iowa how to use a cane on stairs during the NOPBC-sponsored
Sunday morning Cane Walk. On the Cane Walk, blind children learn tips and techniques
based on the guided discovery method taught by (mostly) blind volunteer instructors
while sighted parents and siblings have the option of experiencing a cane lesson
under sleepshades (blindfolds).
Shawn Payne of Utah and his sons Andrew, age three, and Jacob, age five, pose for a picture after participating in one of the two Cane Walk sessions. Parents with infants and toddlers have the option at the Cane Walk to spend time with Joe Cutter talking about early movement and cane use.
On Sunday afternoon, MATHCOUNTS Executive Director, Lawrence
Jacobson, speaks to the Math Now! Forum and Seminar for Math Lovers about the
need for our country to entice young people from diverse populations into math
and engineering careers. The forum was preceded in the morning by a closed math
competition between four students, Hannah Weatherd, Michael Taboada, Kyra Sweeney,
and Megan Bening, and four adults, Steve Jacobson, Nathaniel Wales, Jason Ewell,
and Paul Dressell, using Brailled MathCounts local and regional level competition
materials. Kyra Sweeney concentrates on a problem in the individual round. The
members of the kids’ team listen intently while Kristin Chandler of MATHCOUNTS
gives instructions. The results of the competition are announced at the forum.
Engineer Nathaniel Wales of California gets the top score, but close on his
heels was Louisiana seventh grader, Michael Taboada, who took top honors for
the kids team.
Jean Bugby is accompanied by her adult daughter, who happens to be blind and
severely multiply disabled, as she co-presents at the Sunday afternoon workshop,
“An Introduction to Active Learning.” The Texas School for the Blind (TSB) partnered
with the NOPBC by providing two other presenters for the workshop--Amy Doezema
and Sara Kitchen, both teachers at TSB.
NOPBC board members Kevin Harris and Brad Weatherd organize the first-ever Dad’s Night Out at the 2006 convention. The informal meeting at one of the hotel lounges featured buffalo wings, beer, commeraradia, and lots of talk about--what else?--their kids.
Monday, July 3
The NOPBC annual meeting on Monday afternoon pulls together parents at every
stage of involvement in the NFB. Here, president Barbara Cheadle (center) consults
with NOPBC treasurer and longtime leader in Louisiana, Sandy Taboada (left),
and first-time parent, Teri Turgeon (right) of Massachusetts. Teri and her husband
John are among the eighteen sets of parents who attended the convention with
funding from the NFB Parent Leadership Program--a new initiative to develop
parent leadership at the state and national levels.
On Monday from 5:00 to 7:00 p.m., Braille book lovers of all ages gather for the Braille Book Flea Market.
Ahbee Orton of Texas makes several selections and sits down to read. Bianca Saranieco of California browses through a stack of Braille book titles, and Anna Walker reads a book with her mother, Carlton Walker of Pennsylvania.
The Braille Book Flea Market is fun for the entire family. The Colton family—Denise, Rick, and Katie--pause for a photo before Katie gives her Braille book selections to the UPS volunteers to be boxed and later taken to the post office to be shipped Free Matter for the Blind back to their home in Utah.
Tuesday, July 4
If it’s Tuesday night, it must be IEP workshop night. Teachers, Gail Wagner
of New Mexico and Merry-Noel Chamberlain of Iowa, both past winners of the Distinguished
Educator of Blind Children Award, co-present a workshop for parents and teachers
who are veterans of the IEP process (it was purely coincidence that Tuesday,
and therefore the workshop, fell on July 4). Other workshop options included
an IEP workshop for those new to the process and an “Access-It-Yourself” workshop
about how to locate resources.
Nani Fife, of Hawaii, leads a workshop designed to put the fun back in exercising with her “Hula Workout” seminar for Federationists of all ages.
Lindsay Adair of Texas proudly shows off her Independence Day dress to the photographer who stops by NFB Camp to get a few snapshots of the kids whose parents take advantage of the NFB-sponsored childcare services coordinated by Federation volunteer, Carla McQuillan.
Wednesday, July 5
On Wednesday the convention adjourns at noon and the afternoon is free for convention
attendees to relax, take in the local sights, or drop-in for a little bit of
Cane Talk with Joe Cutter and other Federation mobility instructors.
Kristin Turgeon (Massachusetts) and her father John examine and compare access technology in the vast exhibit hall. The convention brings together in one place at one time, about eighty vendors--nonprofits, for-profits, big companies and small--of specialized products, materials, and access technologies for the blind. The exhibit hall is a rare opportunity for blind kids and their families to, as one mom put it elsewhere in this issue, “try before you buy.”
Levi Bressan from Colorado savors his chance to sit in a red 1957 Thunderbird, one of many coveted cars at the classic and antique car show in the parking lot of the hotel on Wednesday afternoon. The show was organized by the newly organized Classics, Antiques, and Rods (CARs) Division of the NFB.
Thursday, July 6
On Thursday night, a record-breaking crowd packs into the ballroom to partake
of the festivities at the annual banquet.
Dr. Maurer delivers his banquet address, entitled “An Element of Justice,” to an eager and enthusiastic crowd.
Friday, July 7
On Friday, after a general assembly session filled with roll calls, legislative
reports, debates, and votes, we begin to depart the convention center in Dallas.
Satisfied with a week full of fun, education, and rejuvenation, we bid farewell
to many friends. Barbara Cheadle says see you next year to two-year-old Anton
Kiwimagi of Colorado.
by Peggy Chong
The 2006 Braille Book Flea Market, held in Dallas, was another big success. On Monday, July 3, at 5:00 p.m., at the Hilton Anatole Hotel, the doors opened to a long line of parents, teachers, and blind children eagerly waiting for an opportunity to browse through the eighteen large tables piled high with donated Braille books. All afternoon volunteers had helped to open, weed through, sort, stack, and tidy the several pallets of books that had arrived during the last three months.
This year's selection of free books again included Harry Potter, as well as wonderful classics like Heidi. There were also some cookbooks and a few books on gardening, history, and autobiographical material. But as usual, most of the offerings were fiction. Thanks to many individuals, schools, and libraries, we had several pallets of Braille books and a few games donated just for this event. Over five hundred Twin Vision® books (print-Braille picture storybooks) alone were generously contributed to this event. Many had been hand-transcribed. But within thirty minutes of opening the doors, they were all gone.
Hot dogs, brownies, and lemonade were available for busy browsers. They were the really yummy, large hot dogs, yet kids and adults alike were content to wait until the shopping was done before sampling them. Children sat on the floor, deciding which books they would keep to read at night and on the flight home and which should be mailed. UPS volunteers helped box up books to be sent home. In all, three pallets of books (over 200 boxes) went to the post office to be shipped Free Matter for the Blind.
Before the doors closed on the 2006 event, grateful patrons were also given an opportunity (but not required) to make a donation to the sponsors of the event to help defray the costs for the next year’s Braille Book Flea Market. The National Association to Promote the Use of Braille (NAPUB) and the National Organization of Parents of Blind Children (NOPBC) appreciate those donations immensely and wish to extent a big Texas thank you to all who helped in Dallas, to all who donated the many wonderful books, and, a special thank you, to all those who spent time Brailling the Twin Vision books.
2007 Flea Market
It is now time to start thinking about and planning for the 2007 Braille Book Flea Market. The event will be held on Monday night, July 2, 2007, from 5:00 to 7:00 p.m. at the Marriott Marquis Hotel in Atlanta, Georgia, site of the 2007 NFB National Convention. We are soliciting donations of used or new Braille books for children and youth. In addition to children’s or youth fiction books, we will accept cookbooks, craft books, hobby books, biographies, and other non-fiction books that appeal to youth. Please, no magazines, dictionaries, encyclopedias, foreign-language books, textbooks, or books with adult content. If you are interested in donating books or have questions about when and where to ship them, please contact flea market coordinator, Peggy Chong, Des Moines, Iowa, at <peggychong@earthlink.net> or call (515) 277-1288.
Steve Walker (Pennsylvania): I had a terrific time at my first NFB Convention in Dallas. It was amazing hearing the stories of others that have dealt with the same issues my daughter is going through. She and I both enjoyed learning more about cane travel. In fact, the most memorable part of my trip was listening to so many canes tapping on the lobby floor, all at the same time. It was like a gentle rain shower. I called it “the sound of sight.” It is something I will always remember.
Marlene Shapiro (Massachusetts): We are so fortunate that we
were able to attend our first NFB National Convention. Being included as part
of this history-making organization was an overwhelming and moving experience.
The people at the conference were as varied as at any other event, but the tie
that bound everyone together was that they all seemed happy to be there. There
was a camaraderie that could be felt within the hotel walls.
We were able to meet and speak with influential people within the field of blindness and the blind themselves. There was an abundance of people and literature to answer any questions. The knowledge we gained helped us feel good about the difficult choices that we have made for our daughter.
Andi Borum (Virginia): My first national convention was overwhelming. It was held in the largest hotel I’ve ever been in and with three thousand blind individuals from all walks of life. As part of the parent leadership program, I learned that parents have a right to read and hear a positive perspective regarding blindness. With training and exposure to successful blind mentors, we can ensure that our children grow up with confidence and self esteem. This well-organized convention was a wonderful place to get information and explore the many options and opportunities our children should receive in their lives. Parents are their children’s best advocates.
Terri Turgeon (Massachusetts): Our experiences
at the NFB are ones that my entire family will never forget. It was a wonderfully
rewarding experience for our whole family. It allowed my husband and me to talk
about and connect on issues that typically only I deal with. My son, who is
sighted, was in awe of being with so many blind people and around so many canes.
It was good for him to be there, too. Kristin had the good fortune to meet Deborah
Kent Stein [a children’s author who happens to be blind]. As a result, Kristin
starting writing a story with her BrailleNote, and has decided she would like
to grow up to be a teacher or an author like Ms. Stein.
As funny as it may seem, our daughter, Kristin, made the statement while we
were at the convention in Texas, that she didn’t know that there were this many
blind people. After some prodding, she said she thought there were only twenty-five
to thirty blind people in the world. That may seem silly to everyone else, but
to me, it’s very telling and very powerful.
I am surprised to admit this, but I was continuously struck with the sense that our daughter was going to be okay in this journey she’s on. As a family, I felt as though no matter what, I had somewhere to turn if I needed help. That is a very powerful thing: to know that you, your family, and your child are not alone, that you can turn to others more experienced if you have questions or need support.
Barbara Hammel (Iowa): We have joined the NFB to give our children,
whom we adopted from China when they were three, a fighting chance at becoming
productive blind citizens with a positive attitude about their blindness.
After attending the parents of blind children meeting [at the
convention], I realized how far we have to go in educating the social workers
of America. I was astounded to learn that one out of every two blind parents
have been reported to social services. I was one of those [blind parents] to
be reported because one of my sons fell on a toy.
David Hammel (Iowa): My favorite part of the convention was
the Safari Club display. I’ve gone to the zoo many times and tried to describe
the animals, but it is so much better being able to let someone feel a stuffed
animal for himself or herself. I also enjoyed the clicking of the canes in the
atrium--it sounded like it was raining. But it did take a little time to get
used to the canes knocking on the [hotel room] door as people walked past. My
favorite line from the convention was from the speaker who said she would not
feel sympathy for all the “poor, light-dependant people.”
Dasha Radford (North Carolina): I really enjoyed going to the
book fair [the Braille book flea market]. It was challenging and fun to wander
around and find books. It was neat to meet all the people. I enjoyed sitting
in the general sessions because it was fun to hear the different presentations.
Joy Orton (Texas): I loved attending the NFB convention. Our
daughter got to meet many successful blind people; we think it is very important
for her to know blind people in a variety of job fields. We even got to meet
Dr. Nemeth, creator of the Nemeth code for math. How cool is that!
As parents, we connected with teachers and parents of blind
kids, and we were able to use some of what we learned at the convention to improve
our daughter’s IEP and include technology goals for this year.
That’s what some of the families who attended their first NFB
convention in 2006 had to say about the experience. But what about the families
that keep coming back year after year? Keep reading! The following piece features
photos and comments from parents about….Why We Come Back.
Editor’s Note: All of the following parents are also leaders of NFB parent divisions within their states. We have included contact information for each of them. They are available to talk to other families, teachers, or others from their states or regions about the NFB, the convention, or any topic related to blindness.
Julie Hunter (Colorado): Even though my blind child is well
into adulthood, I still love to attend NFB conventions. Taking part in the National
Organization of Parents of Blind Children seminars and meetings is important
to me. It gives me a chance to learn about new approaches to raising and educating
blind kids, as well as providing an opportunity to share my experiences with
younger parents. At home in Denver, I remain active with our state affiliate
and our Colorado Parents of Blind Children, and I use what I learn when helping
young parents with IEP meetings. Attending an NFB national convention is the
best way to get a boost of enthusiasm for what we are all doing in the NFB,
working together to create equality of opportunity for all blind people--children
and adults. [The president of the Colorado Parents of Blind Children is Lucie
Kiwimagi. Her contact information is <kiwimagi@aol.com>.]
Joe and Sandy Taboada (Louisiana) <smerchant@vetmed.lsu.edu>:
Here’s why we come back:
1. To help with our part in organizing/running the NOPBC events (registration primarily) and anything else that needs done.
2. Our son Michael certainly benefits from the program for teens. He has made many friends that he wishes to visit with every year. He has been conversing over the Internet with a friend of a friend that he knows through NFB/NOPBC connections, and he will be meeting that friend for the first time at the 2007 convention. Socializing is SOOOO important!
3. Our younger son (who is sighted) gets to visit with his best friend, Levi (another sighted sibling), and during convention they are inseparable--two peas in a pod--couldn’t be more alike. Again, socializing is SOOOO important.
4. We have also made many friends in the NFB/NOPBC, and feel that we are part of a large family. Some friends we see only at convention. We are very good friends with one family whose two kids (one blind and one sighted) are exactly the same age as our two kids (one blind and one sighted). We live near the East Coast and they live near the West Coast, but we get to spend some vacation time during the convention with them. Socializing is SOOOOO important.
Note the theme? I think everyone that has been to the NFB convention gets a tremendous amount of information and a boost of energy (and the NFB convention is the best place for this). But we can’t forget that we are a family--both the small unit and the larger NOPBC/NFB family--and families need to have fun and recharge our connections to each other, too.
So, we come to help others, to get and give information, to recharge, to renew our friendships, and to rededicate ourselves to the challenges that lie ahead.
Barbara Mathews (California) <barbara.mathews@sce.com>:
Here are a few reasons we come back: Kyra gets to see her friends; I get to
see my friends; we’ll meet new friends; and we will inevitably learn something
(or many things) we didn’t know before. Last summer, Kyra learned how to use
the abacus from Annee Hartzell (a blind teacher of blind children). It was totally
unplanned. I don’t know what it will be next summer, but it will be great.
Stephanie Kieszak-Holloway (Georgia) <president@gopbc.org>:
My family will be attending our fourth annual NFB convention in Atlanta this
summer. The first year my husband and I attended just a few sessions, but we
saw enough to know we wanted to bring the whole family to Kentucky for the 2005
convention. Last year’s convention in Dallas was our best yet as our twelve-year-old
sighted daughter, Sarah, eagerly ran off to the teen room on a daily basis,
and our three-year-old, Kendra (who is blind), had a chance to mingle with other
blind children and adults. Our five-month-old son, RJ, attended many of the
sessions with me. I was honored to be elected to the board of the NOPBC at the
2006 convention as well.
Although Kendra has had a cane since the age of eighteen months, it wasn’t until she heard the tap, tap, tap of hundreds of other canes at the convention that she started to show interest in using hers. Six months after our last convention, Kendra still talks about the Sensory Safari and about meeting Merry-Noel Chamberlain at the Cane Walk. We will continue to attend NFB conventions because it’s the best way we know of to show Kendra that blindness does not need to limit her in any way.
Debby Brackett (Florida) <bwbddl@yahoo.com>: We found
the NFB when researching information about a three-year-old girl we were interested
in adopting who is totally blind. Most groups asked why we would want to do
so, while others told us not to bother. The NFB and NOPBC said, “Go for it!
You can do it, and we’re here to help.” Seven years later, our daughter is an
honor roll student in the fifth grade in regular classes. The NFB helped us
ensure she is given the tools she needs to succeed. She came to us with the
“I can do it if you teach me how” attitude that characterizes the NFB.
Convention is a great opportunity to learn, to teach, and to socialize. We strengthen our knowledge about issues for our children, and we reconnect with the friends we’ve made over the years. It also allows us to help guide others along this path. I can’t imagine a summer without the NFB national convention.
Jill Weatherd (Wyoming) <snowedin@carbonpower.net>: I
remember our first convention in California. We were so overwhelmed. I remember
Brad saying something like, “Now don’t even think about this NFB convention
becoming our vacation every year.” Well, guess what. We’ve gone every year since
then and it IS our family vacation. It’s our family vacation because the NFB
is our family. We have friends in the NFB who get it, “it” being that blind
people are people first and foremost, and that they are more like other people
than they are different. It’s the one week of the year when nobody gives our
daughter a second look, unless it’s because she’s riding her cane like a pony
instead of using it properly. We go because we want to keep tabs on the kids
who are a few years older than our daughter--it’s a way of preparing for the
future and scoping out potential problems and opportunities. We go so that we
can be the supportive “been there done that” family that newer parents can lean
on--because that’s what we experienced as new parents. We go so that our daughter
will get the solid foundation of NFB philosophy that she can add to and carry
with her as she grows up. We’re looking forward to the year we will be going
to watch our daughter in her leadership role as an adult in the NFB.
Maria T. Garcia (New York) <pobcny@verizon.net>: Why
do I come back? I come back because I am the mother of a remarkable child who
happens to be blind. As she grows, her needs change. As her needs change, what
I need to know to prepare her to become the independent “turn the world on its
heels” woman she is destined to become changes.
I come back because every year, bar none, I have found the inspiration and motivation I need to continue for another year as a parent leader in my state. I come back because the convention experience fills me to the brim. I come back because it makes my heart sing.
Carrie Gilmer (Minnesota) <cgilmer@blindinc.org>: We
came to our first convention when our blind son was eight years old; he is now
16. Our top ten reasons for coming back are:
10. It is the one time in the year when our son is in the majority population. At the convention there are tons of peers and mentors for him to hang around with.
9. It is a great learning experience for his siblings.
8. It demonstrates to our son that the whole family is committed and behind him; we believe in his normalcy.
7. The NFB and NOPBC have given us so much; the convention is a time and a place we can give back.
6. Networking, baby! We always find new resources and make new contacts.
5. We can get our hands on exciting new things in technology, aids, and appliances. Try before you buy, is our motto.
4. Our son can visit a “store” [the Braille book flea market] and scour the shelves for a favorite book, pull it off the shelf, and take it home.
3. Excellent speakers that inspire and inform.
2. Mom has maid service for a week and no cooking and lots of fun.
1. Our son would kill us if we didn’t go.
Carol Castellano (New Jersey) <blindchildren@verizon.net>:
We began attending NFB conventions when our daughter was in first grade, when
we were desperate for help with her education. We received help and so much
more. Our daughter is now a senior in college and we’re still attending the
conventions. What we found that first time is what still inspires and energizes
us each time we go--the message that blind people can lead normal lives complete
with a job, a family, friendships, fun, and involvement in community life. We
learn something new at convention each year that can not only help our child
but that we can take back to our home state to help other blind kids and their
families. Attending an NFB convention is absolutely THE BEST thing you can do
for your blind child.
Anticipating the future is part of the task of parents everywhere. This is especially essential in a modern world where rapid advancements in technology change the way we live. Impossible as it may seem, preparing children to live in a world that currently does not exist is still as much a function of parenthood in the modern world as it was in the stone age. For parents of blind children, this can be a daunting task. But the National Federation of the Blind can help. The NOPBC is collaborating with the twenty-five special interest divisions of the NFB to make the 2007 convention a chance for parents to anticipate a future full of hope and opportunity for their children.
The NFB divisions represent the diversity of possibilities for the blind in careers, hobbies, and all kinds of human pursuits. We have a division for enthusiasts in each of the following fields: recreation and sports, the performing arts, antique and classic cars, agriculture and equestrianism, travel and tourism, and Braille. There is a division for college students, diabetics, guide dog users, people in communities of faith, senior citizens, deaf-blind individuals, writers, and a Masonic Square Club division. And twelve other divisions represent specific careers: science and engineering, public employees, computer science, office workers, lawyers, educators, health care professionals, human services workers, rehabilitation professionals, piano technicians, merchants, and entrepreneurs.
Members from these divisions will be speaking at the seminar, conducting workshops for parents, and cordinating exciting activities for our children. They will share tips and techniques, triumphs and disappointments, and their excitement and hopes for the future. In other words, we plan an experience that is as close as possible to a leap into the future to see what your child could be doing next year or in five, ten, or twenty years.
To help you as you make plans for the convention, here is an
overview of the schedule of events:
Schedule of Events
Events or program items listed in all caps in the schedule below are general NFB convention activities. Bulleted items are NOPBC-sponsored events or activities.
For those who have attended past conventions, we call your attention to a change in the NOPBC annual meeting and the NOPBC board meeting dates and times. Because of renovations at the hotel and possible limitations in meeting room space, we will incorporate the NOPBC annual meeting with the seminar agenda on Saturday, and we have moved the NOPBC board meeting to Monday. This schedule will also allow parents and kids to attend meetings on Monday of the various NFB divisions as described above.
Saturday, June 30
SEMINAR DAY
· NOPBC seminar for parents and teachers
· NOPBC annual meeting
· Special activities for toddlers and preschoolers
· A Braille Carnival and other activities for children ages 6 to 12
· Teen programs and activities
· Teen Talk (evening)
· Family hospitality (evening)
Sunday, July 1
CONVENTION REGISTRATION (all day)
EXHIBIT HALL (all day)
RESOLUTIONS COMMITTEE MEETING (afternoon)
· Cane Walk (morning)
· Orientation to the exhibit hall for first-time parents and families
(afternoon)
· Teen Hospitality (afternoon, evening)
· Dad’s Night Out (evening)
Monday, July 2
NFB OPEN BOARD MEETING (morning)
EXHIBIT HALL (all day)
DIVISION MEETING DAY (afternoon, evening)
· NOPBC board meeting (time to be announced)
· Braille Book Flea Market (5:00 – 7:00 p.m.)
· Teen Hospitality Room (afternoon, evening)
Tuesday, July 3
MARCH FOR INDEPENDENCE (before the session)
GENERAL SESSION (all day)
· IEP and other workshops (evening)
· Teen Hospitality (noon and evening)
Wednesday, July 4
GENERAL SESSION (morning only)
· Family Fun--recreational activities for the family (afternoon)
· Cane Talk with Joe Cutter (afternoon)
· Teen Hospitality (early afternoon, evening)
Thursday, July 5
GENERAL SESSION (all day)
BANQUET (evening)
· Drawing for the NOPBC 50/50 raffle fund raiser (banquet)
· Teen Hospitality (noon)
Friday, July 6
GENERAL SESSION (all day)
· Teen Hospitality (noon)
NOPBC Conference Fees
The fee below includes annual dues for membership-at-large in the NOPBC.
$15 one adult
$10 per teen for youth groups accompanied by chaperones
$25 families
NOTE: Registration for the NOPBC events does NOT include registration for the NFB convention. Beginning March 1, you may preregister for the NFB convention by mail or online at <www.nfb.org>.
Questions? Contact Barbara Cheadle: bcheadle@nfb.org or (410) 659-9314, extension 2360
Make checks or money orders payable to NOPBC. Mail to: Sandy Taboada, 6960 South Fieldgate Court, Baton Rouge, LA 70808-5455
2007 NOPBC “Fast Forward to the Future”
Mail to: Sandy Taboada, 6960 South Fieldgate Court, Baton Rouge, LA 70808-5455
YES I wish to preregister now. I understand I will get a NOPBC
conference packet with an agenda and details about workshop options for parents,
kids, and teachers by or before March 1.
NO I do not wish to preregister at this time, but I do want a NOPBC conference
packet as soon as they are available. Please send to the name, address, or e-mail
address below.
1. Adult name:
Please check all that apply: [ ] parent [ ] relative [ ] professional [ ] blind
parent [ ] other
2. Adult name:
Please check all that apply: [ ] parent [ ] relative [ ] professional [ ] blind
parent [ ] other
3. Adult name:
Please check all that apply: [ ] parent [ ] relative [ ] professional [ ] blind
parent [ ] other
4. Adult name:
Please check all that apply: [ ] parent [ ] relative [ ] professional [ ] blind
parent [ ] other
Address:
City, State, Zip:
E-mail address:
Phone number(s):
Name of each child or youth coming with you. Also include birth
date, grade, and brief description of vision and/or any other disabilities (i.e.
sighted, blind, cerebral palsy, autism, etc.)
1.
2.
3.
4.
Enclosed: $ ____________ Preregistration fee
$ ____________ Donation to NOPBC
Total: $ ____________
Will this be your first NFB convention? YES NO
Do you belong to your state affiliate of the NOPBC? YES NO Don’t Know
Since our beginning in 1940, the National Federation of the Blind
has been committed to ensuring that blind persons have access to all of the
opportunities available to them in order to live successful and complete lives.
At this year’s national convention, we are going to take this commitment to the streets and March for Independence!
• Can you imagine hundreds of white canes filling the streets this summer as the sun rises?
• Can you imagine hundreds of sighted friends challenging themselves to walk the independence course under blindfolds in solidarity with their blind friends?
• Can you picture groups of blind people from NFB chapters marching with hometown banners and chapter flags?
• Can you see how the imaginations of the participating blind youth will be stretched after experiencing the power of marching together?
• Can you imagine being part of a movement bigger than any one person is?
If you can imagine this, then you can help the National Federation of the Blind change what it means to be blind!
Be a part of this exciting challenge! Join us in saying, “The blind are on the move and fully engaged in our society.”
Register online at www.nfb.org and become an independence marcher by pledging to raise at least $250 by May 31. Or sponsor a marcher by making a gift or pledge of at least $250, and we’ll credit your sponsorship to one of our blind youth who are working hard to get support to march. E-mail questions to independencemarch@nfb.org, or call (410) 659-9314, ext. 2406.
by Karen Zakhnini
Pull out the calendar and reserve July 30-August 4!
This summer, two hundred blind and low vision high school students will take part in the National Federation of the Blind (NFB) Youth Slam, a four-day experiential academy designed by the NFB Jernigan Institute to empower the next generation of blind leaders, and we want your child to apply!
Has your child had difficulties with math or science subjects? Is your child interested in pursuing a career in science, technology, engineering, or math (STEM)? Have you or your child been told that this is an impossible dream? Does your child feel isolated because of blindness? Does he/she need a successful blind role model to demonstrate that anything is possible? Does your child need some inspiration and motivation to follow his/her dreams? If you answered yes to any of these questions, then the NFB Youth Slam is your answer!
The Youth Slam has three main goals: (1) to break the relative isolation of blind youth and show them that it is respectable to be blind; (2) to expose blind youth to STEM fields in a way that powerfully demonstrates that these fields are open to them, shattering some of the most significant barriers and misconceptions facing blind students; and (3) to create a better understanding among parents, teachers, and the general public that blind people can learn and excel in STEM subjects and careers.
Because blindness is a low-incidence disability, these students often believe that they are alone--many have never even met another blind individual. The Youth Slam offers a unique opportunity for these students to surround themselves with a network of blind mentors and friends, empowering them to follow their dreams.
During the Slam, students and mentors will participate in STEM-focused activities using hands-on techniques designed to stretch the imagination and increase science literacy. With the support of partners such as the Whiting School of Engineering at the Johns Hopkins University and the National Aeronautics and Space Administration (NASA), these activities are sure to be fun, challenging, and exciting!
Participants in the Youth Slam will also have the opportunity to attend seminars on various topics relating to blindness and careers. And don’t forget our social events! From a talent show to a dance and more, your child will have a blast! The Youth Slam will culminate in a rally at Baltimore’s Inner Harbor and a march to the National Federation of the Blind Jernigan Institute.
As an expansion of our Science Academy, the Youth Slam is sure to make an extraordinary impact on your child’s life and attitude. But don’t just take our word for it! Below are the comments of a few Science Academy students and parents:
[Science Academy] has given me the confidence in myself because
I was able to see a lot of blind people who have been successful in science.
Probably without this camp I would never get to meet such people.
--Andrew Wai, PA
Throughout the weeklong program, I learned skills that I will
never forget. Seeing other successful blind people thriving in their lives truly
inspired me… I believe we learned as much from each other as we did from the
science portion. I constantly use the skills that I learned from the blind facilitators
and teachers. They taught us lessons that will guide us for the rest of our
lives.
--Hoby Wedler, CA
It was so good for Hoby to get away from me and find out for
himself that, Yes! This is possible; I can do it; I can live a good life. It
was being with all the [blind] people for a week and hearing their stories that
was so important. Their energy and positive attitudes were passed on to Hoby.
He realized that he, too, was going to make it in life. Again, thank you. Not
only has he changed, but I, also, have changed by watching him this year. I
can see now that everything will be okay.
--Terry Wedler, mother of Hoby
Don’t let your teen miss out on this unbelievable opportunity. Sign up now!
Interested students need to complete an application by April 1, 2007. Accepted applicants will be expected to pay a $200.00 registration fee to complete the application process. This payment is not required at the time of application to the Slam. You will be notified as to when it is due. This registration fee ensures the students will receive air and ground transportation, room and board, and access to all Slam activities and materials (valued at $3,000.00). Students can apply online at <www.blindscience.org>, or can receive an application by e-mailing <youthslam@nfb.org> or by calling (410) 659-9314, extension 2451.
Each state affiliate of the NFB also has a Youth Slam coordinator. These coordinators are available locally to answer questions, to help find funds for the fee, and to help youth and families connect with other resources or find contact information for programs. Your coordinator can be found on the Youth Slam page at <www.blindscience.org>.
The NFB Jernigan Institute is working to help the next generation of blind youth change what it means to be blind. For more information regarding the Jernigan Institute education initiative, please contact Mark Riccobono, director of education, at <mriccobono@nfb.org> or (410) 659-9314, extension 2368.
by Eric Vasiliauskas
Editor’s Note: At the 2006 NFB Convention two fathers of blind children made presentations. They were both memorable. The first was a PowerPoint presentation by Dr. Eric Vasiliauskas, the father of two blind sons. He spoke to parents of blind children at the seminar conducted by the National Organization of Parents of Blind Children on Saturday, July 1. Here is what he said:
Over five hundred years ago a philosopher, Sir Francis Bacon, wrote, “Knowledge is power.” These words of wisdom hold true for every step along the way of raising a blind child. The title of this morning’s seminar is “The Equation for Success.” I humbly submit that these criteria are components for an equation of success in my mind. Can any of the kids in the audience tell me what letter dots one and three represent? The letter “k,” and what word is that? That’s right, “knowledge.” It’s the Braille contraction for knowledge. It has always been my favorite letter in the Braille alphabet. Knowledge plus hard work on the part of parents, and also kids, as well as high expectations and, just to spice it up a bit, dreams really make the equation of success.
Have you ever heard the question, what would you do if you knew you couldn’t fail? I want every kid and every teenager to ask themselves that question. Now I want to pose this question to parents. What would you attempt to do for your blind child if you knew you couldn’t fail? To embrace this philosophy, we need to examine our own paradigms and become aware of what is actually possible. Most importantly, we need to evaluate and educate ourselves about blindness issues. We need to expose ourselves to successful blind people and their parents. The more we do this, the more we come to realize that what is attainable for a blind person and a sighted individual is really not that much different. I want you to take a look for a second at a sampling of the careers, listed on the AFB Web site, that blind adults have chosen to pursue.
I want to go back to the equation. It’s important to remember and appreciate that everyone’s situation is unique and different. This is a dynamic equation: knowledge, hard work, high expectations, and dreams. The final result will depend on the data that you plug into this formula over time. I am sure that every parent amongst you can relate to the fact that you have been given a lot of advice along the way. It is not always an easy task to make intelligent and important decisions. One not only needs to understand the options but also the implications and consequences that follow. Today I would like to share with you some glimpses or examples of the way our family has chosen to address this challenge.
I’d like to discuss the value of becoming an informed and knowledgeable consumer. The areas I want to address are, first, medical issues, then the functional issues in raising and educating a blind child, including general education, special education, social skills, blindness skills, and independence.
My wife and I have been blessed with two wonderful children, who are sitting up front here, Vejas and Patras. Vejas is nine years old and is fully mainstreamed, having just finished third grade at our local elementary school. Patras is five and is transitioning from the district’s preschool program to elementary school. To help maintain our cultural roots, both Vejas and Patras attend Lithuanian school on Saturdays for four hours. Here, as you can imagine, we don’t have access to the same VI [visual impairment] resources that the boys have during the rest of the week. Rasa, my wife, Brailles the Lithuanian textbook pages and modifies the worksheets so that, as amazing as it may seem, Vejas and Patras actually have access to the Lithuanian school curriculum to the same degree as their sighted classmates.
Barbara asked me to touch base on some medical issues. Professionally I’m a physician and a clinical researcher. I am what you might call a super-sub-specialist. My clinical and research focus is really limited to treating children, adolescents, teenagers, and adults with a potentially debilitating condition known as inflammatory bowel disease, that’s Crohn’s disease and ulcerative colitis.
I must admit that, despite all my years of schooling and training, this has been the most educationally intense and educationally fulfilling and rich decade of my life. Over the years, during my medical training, treating patients, and in my own personal life, I’ve had opportunities to see how individuals and families deal with life-altering events. As with many other conditions, blindness initially presents the affected individual and parents with new challenges and new realities to face. How will this affect life and expectations? Through my interactions with the blind community I have come to learn that the degree to which blindness, as with many other conditions, is viewed as a nuisance versus a true disability is not so much based on the severity of the condition as how the individual and family choose to handle it.
One’s choices are influenced by one’s perceptions, which in turn are based on knowledge or lack thereof. Once faced with the reality of a visual impairment or blindness, a multitude of medical questions arise. What is the specific condition or diagnosis? How much can your child see? Are there any short term or long term implications? Are there associated issues? Is surgery needed? Can surgery fix the problem? How many surgeries will be needed? Will special glasses or special contacts be needed? Is a conformer necessary? Is eye-patching needed? Should glaucoma be treated medically or surgically? Is there a risk of further partial or total loss of vision from glaucoma, retinal detachment, or the natural progression of the disease? Where do you start with all these questions? Let’s be honest. For most people, processing, putting together all this information, which is very complicated, is not easy to do. The medical system can be quite difficult to figure out. It is pretty much a complicated maze.
So how do you choose the best doctor for your child’s condition? It’s not enough for your child’s eye specialist to be caring or kind. Now this may come as a shock to you, but I am going to let you in on a little trade secret; not all doctors are created equal. This is not a joke. What do you call the medical student who graduates at the bottom of his or her class? (A voice from the audience): “Doctor.” [laughter] Very good. A pediatric eye specialist may have different training from an adult specialist and a different understanding of things. Furthermore, a book-smart doctor may also not be enough. At times you really want a true sub-specialist, one with the experience, expertise, and focus on your child’s specific eye condition. You will see doctors, ophthalmologists, optometrists, opticians, perhaps a retinal surgeon or glaucoma specialist; and you may seek out second or third opinions. There will be disagreements about the medical and surgical approaches and the prognoses.
At each step you will be given information, which may be conflicting, and you are going to be asked to make difficult decisions, sometimes on the spot, without being presented with all the information. On top of that everybody seems to want to give you advice--not just medical professionals, but other parents, blind professionals, educational professionals. Your parents clip out articles and send them to you. Indeed even strangers want to enlighten you and give you advice, including people at the check-out counter at the store, who share how some relative wore glasses as a child but then didn’t need them anymore when they grew up, or about the miracle surgery they read about or heard about on TV or in Newsweek.
Ultimately parents are the gatekeepers, the processors, and the filters of all this information. So where can we turn to help us process all this information? Unfortunately, the doctor’s office isn’t always the best place to get this information because doctor visits are sometimes short and very focused. You can do a Google search for a specific eye condition. It is a good starting point for a lot of people. You will find out you are not alone. You may learn some things there and be directed to some condition-specific Web site that may be helpful. The problem with some of these eye-condition Web sites is that the information isn’t filtered, and sometimes there is an over-focus on the disability as opposed to moving on with more important issues down the line.
You can also turn to an ophthalmology-specific Web site. These are more carefully screened out. But the reality is that the experts, the physicians, may not be the real experts in your child’s condition. The real experts are out there taking care of patients; they’re busy, focusing on research. They really don’t have time to write back on these Web sites. So you need to process all this information selectively.
The National Institutes of Health has a searchable database of medical literature. You can get the abstracts, the highlights of all the studies out there. Unfortunately, it doesn’t take long to realize that even here, all too often, studies are based on very small numbers of patients. Sometimes data are pulled from a number of different eye conditions, and many of these studies are retrospective, which means they kind of look back at things. They don’t look at it in a forward fashion, really limiting the quality of what’s there. You don’t have good long-term outcomes.
In our case we were aware that, despite the early surgeries, there was a risk of future retinal detachment. Then it happened; our son’s retina suddenly detached. Our retinal surgeon scheduled an emergency surgery. After taking a look inside, he came out and pulled us aside to talk with us. He told us we needed to decide right there and then whether to embark on what was likely to be a futile surgery. You see, the retina was so entangled upon itself that while trying to unwrap and reattach this very, very thin, paper-like tissue, there was a high likelihood that a hole would be put in the retina. Then he might actually lose his eye. How do you think this conversation ended? I wish I could say that we were referred to early intervention services and advised to seek blindness skills training.
Rather, the pediatric surgeon gently reassured us that technology was advancing so quickly that there was no need to worry about Braille and stuff like that. Be sure, the medical system has shortcomings. Doctors and other medical professionals for the most part don’t have a very functional focus. You might see a functional optometrist or a functional ophthalmologist, but even they are focused on maximizing vision. These settings, when intervention is recommended to deal with vision loss, are really focused on maximizing whatever residual vision is there. They are really into saving any vision that they can find. They try to be optimistic and hopeful, and they have a hard time uttering the words, “Your child is blind,” because they view that as a failure. In our first year we saw four pediatric ophthalmologists and five pediatric optometrists. We were instructed to “Keep those glasses on,” “Make sure you get that contact in for most of the day, and keep it in.”
I am sure most of you have checked out the pamphlets in doctors’ offices. They address medical conditions; they talk about preventing blindness and vision loss. They don’t actually deal with blindness, though, or what to do once vision loss has been identified. Any functional literature is really focused on making use of residual vision. We didn’t see any literature from the NFB in the doctors’ offices, nor that of any blindness organization. Braille was never brought up. There was no emphasis or any reference to blindness-skill acquisition. There was no referral to early intervention services. For over a year we received reassurances that “It’s just too early to tell how much your child will be able to see in his remaining eye,” and that we needed to wait and be patient and “See how things turn out.”
Yet Rasa and I realized that, while our little boy recognized us, it was not through visual mode. We knew that he had never seen our faces. We knew what no one else was willing to come out and say. So when Vejas was four months old, we faced our reality and embarked on a Braille- and blindness-awareness journey without much of a map or guide book.
Sadly to say, too many parents get paralyzed, sometimes for years, either in the premedical phase of “why did this happen?” or by focusing on blindness issues that often end up being incompletely realized hopes of normal or near-normal vision. Before I leave the topic of medical issues, I want to make an important point. I can’t stress enough how important it is that, as children get older, they too need to learn about their medical conditions. Over time it’s important to transition them so that they are aware of the medical issues of potential complications and assume responsibility for their eye care. Glaucoma, potential for retinal detachment, and, in many patients, diabetes are ongoing threats of additional visual loss of whatever residual vision there is to begin with.
Now, while we continue to deal with medical issues, including glaucomas, conformers, and scar-tissue build-up, retinal detachment, potential trauma from eye-poking, and such, your family really needs to move on. You can’t just stop there. If you want your child to succeed, the medical issues are really just the beginning.
Parent power: never underestimate the power of a parent’s experience and words. I’ll never forget the first major conference I attended where a lot of blind people were there. At the conference I met a mother who was manning one of these parent organization booths. She eagerly shared with me that, because her son had had some useable vision in one eye, she and the teachers had decided to hold off on the introduction of Braille. Oh how she came to regret that decision. You see, her son, already at the elementary-school level, was having a hard time keeping up with his classmates. This mother did not beat around the bush. What she wanted to relay more than anything else was to make sure our son would be well versed in Braille skills. By that point Vejas was ten months old, and despite reassurances by our doctors that our son would have some useable vision, we had already come to the conclusion that we should learn Braille just in case. But this was an eye-opening personal philosophy change and realization. Our child needed to know Braille in order to succeed. This message, this bold truth, was put forth, not by a professional, not by an educator, but by a mom, a parent just like many of us in the room here today.
At that conference my interactions with blind adults, blind children, and parents of blind children changed the misconceptions and uncertainties I had about the future. From that point on I knew that the focus needed to change from the medical diagnosis and any residual thoughts about why this had happened to an emphasis on our child’s future.
At this point I would like to share with you my grandfather’s equation for success. It’s real simple: education equals success. From an educational standpoint the actual diagnosis is not so important; rather it’s critical to assess whether your child is functionally blind or is a low-vision student. Functioning blind students rely on senses other than vision as their major channel of learning, in contrast to the low vision child, who still uses vision as her major mode of learning. Is your child low-vision or functionally blind? And, more importantly, is there a risk of further loss in the future? The answer to these two questions will help you answer this critical question: what is the optimal reading medium for your child? Will residual vision be a primary mode of learning or just a supplemental tool?
Now let’s take a look at some hard data from the American Foundation for the Blind’s Web site. Forty-five percent of blind or severely impaired individuals graduate from high school compared to 80 percent of sighted individuals. Only 16 percent of those who go on to college graduate from college if they are blind. If you do the math, that’s about 7 percent of our blind kids are graduating from college. If you look at work experience, only 32 percent of legally blind kids make it to the point where they are actually employed. Most of those are Braille readers. If you want to focus on the visually impaired kids, I want to show you this picture I downloaded from one of the schools for the blind Web sites. Look at this computer screen. At this magnification, you can only fit two lines on the page. That’s the equivalent of about two or three words per line. Can you imagine trying to keep up with any level of school work at this magnification? Indeed residual vision can be a disadvantage. The irony is that a lot of times these kids fall further and further behind. As I mentioned, many medical conditions are associated with progressive vision loss over time, and vision tends to decline with age. This applies to all of our kids. This picture is of Erik Weihenmayer, who is now a major advocate for Braille. He too was a kid who resisted blindness skills training and has come to understand that that wasn’t the best approach.
Print and Braille really aren’t all that different. You may hear that Braille slows you down. I want to share one thing my son said when he was in first grade at Lithuanian school. He had just finished an assignment, and I leaned over and said, “Everyone else is still working on their thing.”
He goes, “Dad, I know; that’s because reading Braille is faster.” My son participated in the Braille Readers Are Leaders contest over here. Last year he read over twelve thousand pages. Actually we have a young girl here who read over sixteen thousand pages in three months. Can you imagine any large-print student doing that? I downloaded this graphic from the United States Department of Education Web site. By the end of third grade an average third grader can read eighty-six to a hundred-twenty words per minute. We just found out that Vejas was reading at 182 words per minute with 100 percent accuracy. How hard is Braille? It’s so easy even a child can learn it.
So, if you want to rely on the system, I want to point you back to these two report cards I showed you: educational attainment and job performance. How would you rate your system? Indeed parents are needed to fill the gap between what is currently available and where we need to go. Look in the mirror, and you will find that you are the service coordinator. One parent really summed it up nicely. He said, “Kids need the skills to make it in the real world. They will not be given a break just because they have a visual impairment. Once your child graduates, it’s survival of the fittest.”
I just want to share one other thing with you real quick. My son is in third grade. In the year 2006 in the elementary school setting, first graders learn keyboarding, second graders are learning Word, and third graders excel in PowerPoint. My son Vejas just did a PowerPoint presentation on the Lincoln Memorial. How’s that for a wake-up call?
In his classroom we have actually set things up so that he can function independently. You’ll see in the picture over here that he’s got his Perkins Brailler, and behind that he is using his BrailleNote. All he needs to do is turn around over here, walk over to the back of the room, and, by pointing his BrailleNote at one of these infrared ports, he can either print or emboss whatever he needs, right in class, independently, on his own. Isn’t that pretty cool!
As I wrap it up I just want to share with you again, knowledge is important. Kids in the audience, you can use this to your advantage. My son asked me if he could go skiing because he read about it in a book. So we went skiing. He read a book about snowboarding, and indeed we went snowboarding. I wasn’t sure how to approach this, so I actually went to the NOPBC blindkid listserv, which you parents all should be a part of. Some parents gave me some tips on how to make that happen. Vejas read a book on surfing and asked what surfing was. He was five and a half. I put it off for a year; then he asked me again, and I had to do it. Here is my little six-and-a-half-year-old surfing the waves in Kauai. Here he is at eight-and-a-half, and I think I have the coolest desktop in the entire world. With that I’m going to stop and ask that at this conference we take advantage of all the resources we have and network. We can all learn a lot from each other and spend time getting to know each other. Get the kids to interact, not just at the various official functions, but at the pool and such too.
by John Wai
Editor’s Note: John Wai is the father of Andrew Wai, who is blind. What follows is the edited text of the presentation he made on Thursday, July 6, to the 2006 NFB National Convention in Dallas, Texas:
It was fifteen years ago--a cold and rainy day. As I came out of the doctor’s office, holding our first child in one arm and my wife with the other, I could not tell whether the falling drops were her tears or rain from the sky. We had just been told that Andrew, our four-month old baby, had very limited vision, if any at all. He had a flat electroretinogram and a diagnosis of Leber’s Congenital Amaurosis. Our hearts were dropping into an ever-growing black hole.
Dr. Levin, the pediatric ophthalmologist, gave us a small book with a unique title, “What Color Is the Sun,” published by the National Federation of the Blind (NFB). Yes, a Kernel book published in 1991. Two articles in that book profoundly changed my perception of blindness. The first one is “Blind Faith,” written by Mike Pearson. It is about a group of seven students from the NFB Colorado Center for the Blind in Denver, climbing up the face of a 200-foot-high rock. The second one is “Growing up Blind” by Jan Bailey about her father’s role in breaking all the unnecessary constraints imposed on blind children. I was impressed. I wanted to learn from them. We contacted the National Federation of the Blind, talked to Mrs. Barbara Cheadle, and joined the National Organization of Parents of Blind Children--the NFB’s division for parents.
The most important word we learned from the NFB is “expectation.” We expect Andrew to be learning at a level comparable to his peers of the same abilities and interest, and nothing less. To achieve this, Andrew needs to fill his toolbox with special skills. He has to learn Braille. We were told that Andrew didn’t need Braille because it is slow and will be replaced by other technology. My wife tearfully disagreed. We fought hard on this, and we finally won over the support of the special education supervisor in the school district. To date, Andrew’s toolbox is populated with Braille, a BrailleNote, a Braille embosser, a scanner, an optical recognition program, a screen reader (JAWS), an e-book reader, speaking calculators, and more.
Andrew is doing very well in school and is particularly interested in science and math. Both my wife and I are scientists. We know these are tough subjects, and we have great concern as to how Andrew will continue to excel. Two years ago, Andrew was very fortunate to be chosen to participate in the NFB Science Academy. We trust that whatever the NFB chooses to do, it has a purpose and it will have profound implications. The camp lived up to our expectations and beyond. Between the day we dropped him off and the day we picked him up, we witnessed a tremendous transformation. The NFB instilled its philosophy in this young man. He demanded to be more independent. For the first time, he whole-heartedly accepted his tools--the Braille, the cane, and everything. Through doing a dissection himself, he learned to trust his hands and fingers. Through interacting with excellent blind scientists, he was inspired to dream of doing whatever he wants to do. He is determined.
Andrew just finished ninth grade. I would like to report that Andrew won eight academic awards. These include a presidential academic award, an academic excellence award, excellence in French, excellence in orchestra, excellence in social studies, and in particular, excellence in science, excellence in Algebra II, and a gold medal for Continental Math. In eighth grade, he led his team to win the championship in the Upper Bucks-Montgomery county academic competition among forty teams from area middle schools. He was chosen to be the most likely to succeed by his class of 300 students. Thank you for the NFB Science Academy.
Last year, Andrew went to the NFB Colorado Center for the Blind summer program. He climbed up the face of a 200-foot-high rock, exactly as described in the Kernel book I read when Andrew was an infant. I’m thankful to have this unassuming little book. A few months later, I happened to be in Scottsdale, Arizona. Andrew encouraged me to try rock climbing. Half way through ascending this vertical rock face, holding on to the cracks, I finally appreciated why the NFB sent these young fellows rock climbing. They need strong determination to get up the rock. The NFB was building their wills.
Early this week, I was in a three day leadership training program. One of the activities involved blind-folding all twenty-five participants. We were holding onto a rope, not knowing that we were all entangled. We were then told to find a way to hold on to the rope and make it into a perfect square. I asked myself, what would my son do? I quickly formulated the plan and communicated to the team how to complete the task. Later, I was asked how I accomplished this. I replied that I know I do not need to see to have vision, I do not need to see to lead, I do not need to see to accomplish. I know a lot of people without sight who accomplish these tasks every day. Thank you Andrew, thank you NFB. You are inspiring.
Editor’s Note: The following award presentation took place on Monday morning of the 2006 Convention at the meeting of the NFB board of directors. The speech gives the details, but no words can fully express the respect, the love, and the graditude hundreds of parents feel for Joe Cutter. He truly embodies the spirit of this special award. Here is the excerpt from the article, “Awards Presented at the 2006 Convention of the National Federation of the Blind,” published in the August/September issue of the Braille Monitor:
Late in the board meeting President Maurer called Allen Harris, president of the National Blindness Professional Certification Board, to the platform. He introduced James Omvig to present the 2006 Schroeder Award. This is what Mr. Omvig said:
The officers and directors of the National Blindness Professional Certification Board (NBPCB) are pleased to present the 2006 Fredric K. Schroeder Award for outstanding contributions to the field of travel training for the blind. In bestowing this high honor, the NBPCB follows the lead of the National Federation of the Blind: that is, the honor is not automatically presented each year, but only as often as it has been earned through exemplary service in the field of work with the blind. Our first recipient (in 2002) was Roland Allen, NOMC [National Orientation and Mobility Certification], of the Louisiana Center for the Blind, and the second (in 2003) was Doug Boone, NOMC, of Pennsylvania.
Before presenting our 2006 recipient, let me offer just a word about the award. In the field of orientation and mobility (O&M), no name holds more weight or lends more prestige and credibility than that of Dr. Fredric K. Schroeder. Therefore it is particularly fitting that the NBPCB’s highest recognition be named in his honor. Fred Schroeder’s background and record of achievement set a singularly high standard of excellence for this award. Many newer NFB members may not be aware of it, but Fred was the first blind American to earn a master’s degree in one of the old-line O&M university programs. It is not of course remarkable at all that Fred graduated with high honors, earning a master’s in O&M. He is extremely intelligent and highly motivated. More remarkable are the facts and circumstances surrounding his matriculation into the O&M program at San Francisco State University and his subsequent efforts to become certified in the profession.
By the late 1970’s Section 504 of the Rehabilitation Act of 1973 was being implemented. It prohibited discrimination against people with disabilities by entities that received federal funds. This prohibition included universities. To try to insulate themselves from charges and findings of discrimination for closing the university O&M programs to blind candidates, the good old boys who ran them in the 1960s and 70s agreed to stand as one on the presumption that sight was absolutely essential to teach travel to the blind. They reasoned that, if they were all to insist that sight was an essential function of the position, then excluding the blind could not be found discriminatory. However, the man who ran the San Francisco State program broke ranks. He met Fred, liked him, and admitted him to the program. Fred completed the program with high honors.
Then, since professional certification was completely closed to all blind candidates at the time of his graduation (discrimination against the blind was rampant), Fred never received AAWB/AER [American Association of Workers for the Blind/Association for Education and Rehabilitation of the Blind] professional certification, but, to give you, as Paul Harvey says, “the rest of the story,” I would like to state here for the record that Dr. Fred Schroeder is now a certified O&M instructor. It seemed only fitting that he receive the very first National Orientation and Mobility Certification ever presented by the National Blindness Professional Certification Board.
These then are a few of the salient facts about Dr. Fredric K. Schroeder, NOMC, but even these facts do not reveal all of the evidence of the true character and spirit of the man. Still this brief history tells the story of why it is fitting that our award for excellence be named for him. Intelligence, drive, patience, compassion, stick-to-itiveness, good sense, and a fierce passion for justice for the blind: what more can be said; what more could be wanted?
With this bit of history as a backdrop, we turn to our 2006 award recipient. He first earned an undergraduate degree in sociology from Bloomfield College in New Jersey. He then went on to earn a master’s degree in special education with a special certificate as a teacher of blind children from Trenton State College (now known as the College of New Jersey). He is Mr. Joe Cutter. Joe, will you please make your way to the podium?
Many Federationists may not be aware of the name of Joe Cutter, but wherever people discuss teaching travel to blind infants, toddlers, and young children, Joe’s name is ubiquitous. In case you don’t already know it, Joe is sighted. His story demonstrates conclusively that it is not eyesight--or the lack of it--that defines a true professional in work with the blind. What distinguishes the true professional from the rest of the pack, the wheat from the chaff, is a complete understanding of and profound belief in the truth about blindness--the normality of the blind as a group and the concomitant high expectations for success which necessarily follow from an understanding of this enlightening truth.
Joe’s first job was working with a special group of blind high-school-age residents of the Johnstone Training and Research Center in Bordentown, New Jersey. Before long, Johnstone requested that someone come to the institution to train Joe in O&M. A year or so later (in 1972) the New Jersey Commission for the Blind had a vacancy for an O&M instructor, and Joe got the job.
Within a couple of years the Commission identified a serious problem--an enormous void in real independence and mobility skills among the blind youth of New Jersey. Joe was asked if he would like to work with very young children. Thus began the Early Childhood O&M Program of the New Jersey Commission for the Blind. Joe’s new program focused on blind children from birth to age seven, the first such program in the country.
By 1990 Joe was recognized by the New Jersey Commission as its Teacher of the Year. As a part of this recognition, Joe was presented with a cash award. Consistent with the character of the man, Joe used the money from his award to enable parents of blind children to attend infant development lectures at Rutgers University and organized a trip for blind children and their families to the newly created audio-described performance of the New Jersey Ballet’s Nutcracker Suite. Then our own Carol Castellano met Joe Cutter and persuaded him to become involved in the National Federation of the Blind.
In 1994 Joe initiated the Cane Walk at the convention of the National Federation of the Blind: an event which has grown in popularity every year and in which he still takes part. At that same convention Joe was presented with the Federation’s Distinguished Educator of Blind Children Award. He is currently hard at work on a book that will be out sometime in the coming year. It is called, Independent Movement and Travel in Blind Children: A Promotion Model.
Although he is sighted, Joe exhibits a fierce passion for justice for the blind, and he exemplifies the personal dedication, teaching skills, and professional excellence that are the hallmarks of the National Blindness Professional Certification Board. His teaching services have had a profound, positive, and lasting impact upon countless blind consumers of services.
Joe, in order to memorialize this special occasion, I am pleased to present you with this engraved walnut plaque. It reads:
FREDRIC K. SCHROEDER AWARD
PRESENTED TO
JOSEPH CUTTER
FOR INNOVATION AND DETERMINATION IN HELPING BREAK DOWN THE BARRIERS
IN THE FIELD OF LONG CANE TRAVEL FOR BLIND CHILDREN.
BECAUSE OF YOUR PIONEERING, DEDICATED, AND TIRELESS CONTRIBUTIONS
TO THE FIELD OF TRAVEL TRAINING FOR BLIND INFANTS, TODDLERS, AND YOUNG CHILDREN,
COUNTLESS BLIND TEENAGERS AND ADULTS OF TOMORROW
WILL BE ENABLED TO WALK INDEPENDENTLY THROUGH LIFE WITH FAITH JUSTIFIED BY SELF-CONFIDENCE.
NATIONAL BLINDNESS PROFESSIONAL CERTIFICATION BOARD
DALLAS, TEXAS
JULY 3, 2006
Joe Cutter came to the stage to receive the award. In accepting it he said:
Wow! This has certainly caught me by surprise. What an honor! You guys--the National Federation of the Blind…. When I was at a point in my professional career of--perhaps burnout is too strong a word, but approaching that--through Carol Castellano and Bill Cucco and other parents of blind children in New Jersey, I was introduced to the National Federation of the Blind and its philosophy and Joe Ruffalo and other New Jersey Federationists. I took to the philosophy like a duck to water. What I had to say seemed to be of interest to Federationists as well. It became a natural marriage.
I am so overwhelmed today to receive this honor. Especially since my first introduction to the Federation was at a state convention, where I shared a parents seminar with Dr. Schroeder and was mentored by his philosophy and his early writings, particularly his articles talking about blind preschoolers using canes. I was fueled and motivated by that because I was not motivated by the conventional profession of O&M. So my model changed from more deficit to asset thinking. And burnout was no longer in the picture. It was fuel--high octane.
This is a total surprise to me today and quite an honor. Just when I think I have perhaps reached my professional best and when I think that I have given what I have to give, this organization has always raised me up to more than I can be. Thank you so much, thank you.
by Gayle Prillaman
2006 Distinguished Educator of Blind Children
Editor’s Note: For many parents, one of the highlights of the National Federation of the Blind (NFB) convention is the keynote speech at the annual meeting of the National Organization of Parents of Blind Children (NOPBC). This address is always delivered by that year’s winner of the Distinguished Educator of Blind Children Award. The accumulative influence of these award winners goes far beyond the power of their speeches to inspire (which they do) or the incredible amount of information they have to share. Without fail, our award winners’ greatest contribution lies within the kind of people--and the kind of teachers--they are. They are people of integrity and energy. They care deeply about their students, and, therefore, make it their business to be the best teachers they can be. It goes without saying that they have high expectations for all their students. Gayle Prillaman, the 2006 winner from Franklin, Tennessee, is a credit to her predecessors. At one point in her speech, Prillaman states that she has earned the nickname of the Velvet Hammer because of her tactful, but persistent nature. In addition to her impressive experience and expertise, Prillaman believes passionately in the power of parents to make a difference in the lives of their children. This attitude made it easy for parents to approach her throughout the convention to tap her extensive knowledge. Gayle Prillaman truly earned and deserved the recognition she received in the form of a beautiful plaque, an expense-paid trip to the 2006 NFB convention, and the $1,000 award. Printed below is a slightly edited version of her keynote address to the July 3, 2006, NOBPC annual meeting in Atlanta, Georgia. Here is Prillaman:
I grew up in a small town in Virginia in the sixties when all children who were
“different” were sent off somewhere or not served at all. When I went off to
college on a music scholarship, I had never met a person with any type of learning
difference, let alone blindness. In my junior year, I changed my major to psychology
and discovered I loved learning about learning. My psychology classes about
how the brain develops and about theories of learning wetted my appetite to
know more.
A year after graduating from the University of Tennessee, I saw an advertisement about a graduate program in the education of the blind at the University of Virginia, and I began to wonder how blind children learned. It was a two-year program specifically designed for folks who did not have undergraduate work in education. I thought about it for a couple of months, made a few phone calls, and then applied--even though I had never so much as spoken with a blind person in my life. It is not an overstatement to say that this field chose me. The next fall, I began what has been a joyful and fascinating thirty-year journey alongside families and their blind children. Part of what keeps me in this work is the joy of constantly learning, the challenges of new situations, and the successes of great kids.
I repeat, this field chose me; I had no idea what I was getting into. Over these thirty years, I have taught blind children in public school programs and in specialized programs for the blind. I have taught in Virginia; upstate New York; Nashville, Tennessee; the Tennessee School for the Blind; and in Arizona, where I was the preschool outreach coordinator for the state. Currently, I teach in the public school system in Williamson County, Tennessee, where, five years ago, I started the county’s first visually impaired program.
During these thirty years, I have acquired some useful knowledge about the education system. I have also learned some invaluable lessons from my students and parents. I would like to share some of that knowledge with you today. Let’s begin by looking at transitions and change in particular. Finally, I will conclude with some personal examples of the many special lessons I have learned from my students and their parents.
First, as you may already know, the quality of services available to you and your child may vary tremendously within your state. Rural school systems often have smaller budgets and fewer resources than larger urban districts. They also have fewer blind students and may have difficulty finding certified teachers of the blind. There is also great variability of services for blind children from state to state. Some states, like Texas, have a statewide vision consultant (an education specialist for the blind/visually impaired), regional service centers, and a state school for the blind. The centers provide training and technical assistance to school districts with blind students, and the state school for the blind is a resource for the entire state and even the entire country. These three levels of support are available to all local school districts in Texas. However, other states may have a school for the blind, for example, but not a state consultant for the blind/visually impaired or regional service centers. This is true in spite of federal legislation and good intentions. So, if you find yourself feeling like a pioneer, blazing a new trail for services in your area, you may be just that--even in 2006.
Change and transition
Your child’s educational needs will change from year to year. Try to embrace
the change rather than resist it; it is a natural part of growth. Living things
do not stay the same. Our children will grow, adapt, and continue to learn throughout
their lives. Each new school year will bring changes in teachers, too. This
may be disconcerting, but on the positive side, it gives your child the opportunity
to work with and learn from people with a variety of personalities and expectations.
There is a delicate balance between being challenged to grow and being overwhelmed. The demands of the public school setting can be overwhelming at times, especially at key transition points. If you see signs of extreme or prolonged stress in your child or yourself, do not ignore it. Do not hesitate to ask for appropriate accommodations and modifications for your child, or counseling support and information about local support groups for yourself, if you need them. The bottom line is that your child should be learning, have friends, look forward to going to school each day, and feel confident about herself/himself.
Also, do not forget that there is a range of educational options available to your child. There is no one type of educational setting that is appropriate for every blind child. Each child and family has unique needs, and each educational placement provides different levels of instruction and support.
There are several natural transition points during your child’s school experiences that are times of major change. These are:
Preschool to elementary school
This is a time when the focus shifts from the family to the child. New demands
are made of your child. He/she is expected to pay attention in a group and follow
directions. Generally, you will have less frequent communication from the elementary
teacher than you had from the preschool teacher. This means that you may need
to initiate the communication with the teacher. Reading is actively taught through
third grade. By fourth grade, the emphasis is on vocabulary development and
students are expected to be able to read independently. Parents need to have
age-appropriate expectations about reading skills. If your child’s skills are
lagging behind, you need to ask why. Be sure your child is introduced to accessible
technology at an early age and maintains age-appropriate computer skills at
each grade level, whether he or she is a Braille student or a print reader.
Always be sure your child is oriented to any new building he/she will be attending
before classes begin.
Elementary to middle school
This transition brings an increase in the number of children and teachers with
whom your child interacts and usually less overt parent involvement in the school.
The agenda of many teachers at this age is to prepare students for high school.
Classroom teachers may be less flexible at this level than at high school. Social
issues are paramount for students. There are usually more opportunities for
participation in athletics and extracurricular activities than are available
in elementary school. In middle school the volume of work increases as well
as the pace of instruction. Students need to be able to advocate for themselves
and to be well organized. This is a very important time to have close communication
with your child’s teacher of the visually impaired.
Middle school to high school
More class options and greater flexibility in scheduling come with this transition.
Many extracurricular opportunities are available. This is the age to explore
many different types of experiences and leadership opportunities through classes,
clubs, volunteer work, tutoring other students, and working part time. Did you
know that work experience before graduating from high school is one of the most
important experiences your child can have? It is a leading predictor of success
after high school.
High school classes, especially honors and AP classes, require massive amounts of reading. Your child will need a variety of alternative techniques as well as excellent reading skills and speed to get the most from any class, but especially the advanced classes. You can expect a great deal of testing in high school. In addition to the ACT and SAT for college-bound students, your state, like mine, may require that students pass other state exams in specific core subjects in order to get a regular high school diploma. My local district also requires end-of-course exams in several academic areas for all high school students. Be sure your child has all appropriate accommodations and formats for these tests.
Preparing for the transition after high school
Be sure to establish a relationship with vocational rehabilitation services
in your state before your child graduates from high school. Once your child
graduates from high school, all services provided through your school district
end and materials and equipment are no longer supplied--a new set of guidelines
for eligibility and types of service through your state vocational rehabilitation
agency goes into effect. It is very important to begin this transition to the
next service environment before the senior year in high school. In fact, a vocational
rehabilitation counselor should attend your child’s IEP meetings during the
junior and senior years.
Vocational rehabilitation agencies may have slightly different titles state-to-state, and some states, such as New Jersey and Iowa, have entirely separate agencies or departments for the blind. Whatever their titles or structure, this agency receives federal funds to provide financial assistance for job training, college, technical school, continuing orientation and mobility training, and tuition for rehabilitation training centers. Speaking of training centers, do not forget to explore evaluation and training opportunities available through the National Federation of the Blind training centers in Colorado, Minnesota, and Louisiana. Rehabilitation funds can often be made available for this training, too. Also, rehabilitation can fund special equipment related to employment or while in training that will lead to employment.
Those are some of my thoughts about change and transition. Now, let me talk with you about my experiences regarding the role of administrators and teachers in your child’s educational services.
Role of administrators and teachers
Very often, school administrators have little idea of what you or your child
need in terms of educational services. They might know that they must provide
the services of a certified teacher of the blind and an orientation and mobility
specialist, but have a superficial understanding of what these teachers actually
do. Because of the relatively low numbers of blind and vision-impaired students,
our programs are often below the radar within a school system. But parents and
teachers can change that.
In my system, each new teacher is required to be observed three times each fall as part of the teacher evaluation process. The observers are either school principals or coordinators in the student support services department. For teachers of the visually impaired, this is unusual. I have worked in many school districts where the administrators have never observed itinerant vision teachers actually teaching as part of the evaluation process. But I saw these observations as a wonderful opportunity to educate key administrators about blind students and about our new visually impaired program. This county had never had a full-time teacher of the visually impaired, and I wanted the administrators to know what we do. If they observed me teaching, then I could model for them a positive philosophy of blindness.
So, in my second year of building this new program, the principal at one of my schools observed me with a blind second grader. That same year, my coordinator from the student support services department observed me with a blind high school student. One year later, the principal became the superintendent for the entire school system and the coordinator moved up to become the director of student support services. Both of these individuals have become powerful advocates for our program. They are definitely the reason we were able to hire a new teacher of the visually impaired each year for the past three years.
And what can parents do? Make a point of introducing yourself to the director of special education services in your system at least once during the school year or immediately after the end of the school year. If that is not possible, e-mail him or her with a positive comment about your child’s school year experiences. You would be amazed at how seldom an administrator actually meets our students or has contact with parents when things are going well. Meeting you and your child in pleasant circumstances does so much to help an administrator form positive perceptions about blindness. These are the key people who approve requisitions for big ticket accessible technology items, approve hiring additional teachers and mobility specialists, and provide funding for things like a Braille class for parents.
Parents can have a tremendous impact on the level of service the school system provides. Interested, active parents draw positive attention to the needs and successes of their children. The school system loves to celebrate the success of your children. My school system employs a public relations staff person for just this job.
Now, let me talk about the relationship between the teacher of the blind and the parent. Communication is the key to creating and maintaining excellent services for your child. Tell your child’s teacher what you need. Do talk about what is difficult at home for your child and what concerns you--i.e. setting limits, learning to ride a bicycle, eating skills, etc. Do ask for clarification about things you don’t understand concerning school procedures or your child’s progress. Do ask for information of all kinds--summer camp, names of other parents you can talk to, names of local piano teachers, etc. Do ask for help in meeting competent blind role models from your own community. Of course, you cannot cover all these topics in two or three conversations or meetings at school, so remember to keep the dialogue going throughout the year. I believe parents should be able to think of their child’s teacher as a resource for them and an advocate for their child.
And what about regular education teachers? In my county, we operate on the inclusion model. We do not cluster blind students together in one school or offer resource rooms, but serve all students in their neighborhood schools. This means that each fall we “begin again” in multiple schools to educate each school staff. Part of my job as a teacher of the visually impaired is to change their perceptions of what it means to be blind and raise their expectations for the new blind students. To do this, I need the support of administrators and most particularly I need the support of parents. We are always more successful in changing attitudes in the school when parents reach out and help in that education process. We need you to reach out to other parents of blind children in your school system, to your community, and to your child’s teachers--the general education teachers, the physical education teacher, the music teacher, the art teacher--all of them. Students themselves are part of that process, too. I am very aware that my students are changing the public perception of what it means to be blind every single day.
In my county, I have found that the educators are very open to the training I offer them and are very willing to do whatever it takes to make their classrooms stimulating and supportive for our students. As the highly qualified teachers in their academic content areas, they must assume responsibility for all students--including my blind students. This is a powerful shift from assuming that the teacher of the blind has the primary responsibility for the educational program for the blind or vision-impaired student. I do provide direct instruction in Braille and the expanded core areas for the blind and visually impaired, but I am equally responsible for supporting the general education teachers and providing adapted materials for my students to use in their classes. This educational philosophy and approach for blind children have many challenges but also many rewards.
Everyone has a role to play in the system--parents, students, teachers of the visually impaired, regular classroom teachers, and administrators. Everyone’s participation is needed to ensure success for our blind and vision-impaired students.
Now, let me share with you some personal stories from the past thirty years of my teaching career. From my students and their parents I have learned the true meaning of courage, teamwork, and persistence. I have also learned to be sensitive to others’ reactions to change, and I have learned that imagination is more important than knowledge. Here are my stories:
Courage
I was a preschool outreach coordinator in Tucson for the Arizona School for
the Deaf and the Blind when I first met Anna and her parents at a parent meeting
at the school. Blind from retinopathy of prematurity (ROP), Anna was four years
old and small for her age but active and very spunky. She was wearing a tee
shirt that said, “Never give up.” I visited her about a month later at her home
in Bisbee, which is a mining town built on a series of very steep hills. Her
home was perched on top of one of these hills. Imagine my amazement when I stepped
out the back door of her home for her to show me her swing set. There was a
low cinderblock wall about one-foot high around the three sides of her postage-stamp-sized
back yard with twenty-foot drop-offs on two sides and very old, narrow, and
steep concrete steps descending down the third side to the store. Anna not only
showed me how well she could swing that day but that she could walk up and down
those steps by herself. I was in awe of her parents who were courageous enough
to allow her to be as safely independent as she could be. I had no doubts that
when the time came for her to go to her local kindergarten in Bisbee, she would
do just fine.
Teamwork
Sammy was a totally blind boy with multiple disabilities who received services
from six different specialists, including myself. I had the privilege of working
with him for four years in the Metro Nashville school system. Early on I was
struck with how graciously his mother communicated with the various instructors
and therapists who made up the team that worked with him. Communication and
coordination was a priority for her, but that was not always easy. She worked
full-time and team members were rarely at his school at the same time.
So, at his mom’s request, we wrote into his IEP that his team would meet monthly to monitor his progress and collaborate on teaching strategies. We got better at it each year. Before we knew it, we were functioning as a trans-disciplinary team. We made it a priority to schedule overlaps during the week and to work in pairs when possible on lessons and classroom activities. I learned firsthand of the synergy that can occur when a group of specialists are focused on the same goals and are constantly coordinating their efforts. And all this happened because a parent asked for teamwork. This was a powerful experience and one I strive to replicate. It doesn’t always come together, but when it does magical things can happen.
My advice to parents? Never assume that all the different specialists who work with your child are communicating frequently with each other; in fact, they may not even be on the same page. At your child’s IEP meeting, you can ask that regular communication be specified either in the minutes of the meeting or on the service page. If regular meeting times are documented in the IEP, they are more likely to happen. Otherwise, as everyone’s schedules keep absorbing new students, there is soon no time for informal meetings. Getting it in writing benefits the therapists and teachers by allowing meeting/consult time in their schedules.
Change can be tough
Another important concept that parents have taught me is that I need to be sensitive
to those for whom change is tough. I learned this from a parent of a student
in my preschool class for blind children in Nashville. I had taken the teaching
position with some very definite ideas about what my preschool students needed
and what I wanted to offer to parents. The class was very diverse and several
students were from inner city neighborhoods. I added a regular home visit to
my classroom schedule and started looking for several sighted peers to add to
the mix of our class. I scheduled regular visits by blind adults to read aloud
during story time. Before the end of my first week, a very outspoken mom informed
me, as she dropped her daughter off one morning, that she didn’t like any of
the changes I had made to the class and she wished it could go back to the way
it had been--including the previous teacher. I was taken aback but somehow found
the words to acknowledge her discomfort and to assure her that we both wanted
the same things for her daughter. I was sure we could work together. It took
several months for this mom to get comfortable with the changes and to learn
to trust that awful new teacher. It did turn out to be a positive experience
for her, but it was painful at first. I am usually energized by change, and
in my enthusiasm about the class I had overlooked her early signals of discomfort.
So, I appreciated her honesty, even though it was hard to hear at first.
Imagination is more important than knowledge
Four-year-old Cindy was in my preschool class. In addition to blindness, she
had cerebral palsy (CP) that affected the use of her legs, trunk, and hands.
She was very bright and talkative. She loved books, loved being read to, and
always asked wonderful questions. I called them Cindy Questions. Here’s an example:
“What will happen if I let this kite string go?” she once asked me as she released
the kite.
The problem was that her hands were habitually curled up into tight fists. Fortunately, I had the wonderful support of a skillful occupational therapist and physical therapist. Together, we decided to work to get her little hands open so she could be a Braille reader. I had never taught a student with CP to read Braille, and I had doubts about whether she had the tactile discrimination skills to be successful. But then I thought, Why not? We had to try, and her family was on board. I hoped that with her intelligence and drive she could do it--and she did. That little girl really wanted to read. Once those hands were open and strengthened, the Braille skills came steadily. She was reading her Braille alphabet in kindergarten, and this fall she will be reading her way through ninth grade in a public high school in Nashville.
Another student I have worked with this past year reminds me that NFB’s insistence on high expectations and age appropriateness help us imagine the best for our students. Ten-year-old, blind, and autistic David moved to our county a year ago. He is very verbal, very musical, able to recite pages of stories after hearing them once, and has a wonderful sense of humor. However, any change in his daily routine confounded him. He couldn’t feed himself with a spoon or fork, and his speech often had nothing to do with what was going on around him. He only used his fingers to push buttons on electrical musical toys and keyboards.
No one had imagined that he could use an object schedule to anticipate his daily routine. No one imagined that h