A Magazine for Parents and Teachers of Blind Children published by
the American Action Fund for Blind Children and Adults in partnership
with the National Organization of Parents of Blind Children.
Volume 29 Number 2 Special Issue: Blind Children with Additional Disabilities
Deborah Kent Stein, Editor
Copyright © 2010 American Action Fund for Blind Children and Adults
For more information
about blindness and children contact:
National Organization of Parents of Blind Children
200 East Wells Street at Jernigan Place, Baltimore, MD 21230
www.nfb.org/nopbc • [email protected] • [email protected]
Volume 29 Number 2 Special Issue: Blind Children with Additional Disabilities
A Letter from the Editor
by Deborah Kent Stein
Seeking an Inclusive Education
by Srikala Naraian
Without Exception: Teaching the Skills of Blindness to Children with Additional Disabilities
by Natalie Shaheen
The Driving Power of Love
by Editha Jones
Diya Becomes a Bat Mitzvah
by Caryn Navy and David Holladay
Using the Teaching Cane Strategy with Children Who Are Deafblind
by Mary Tellefson
From Tumbles to Triumph: Using a Cane from a Wheelchair
by Treva Olivero
Leveling the Playing Field
by Kathy Gabry
Down a Different Road
by Barbara Hammel
HOME AND COMMUNITY
This Is Jack
by Marie Smith
To the Members of the "Other" Box Club
by Michelle Hess
Tools for the Journey
by Andi Borum
QUESTIONS TO PONDER
From a Statistician's Point of View
by Stephanie Kieszak-Holloway
A Risk Worth Taking
by Deborah Kendrick
Your Treasure Hunt: Disabilities and Finding Your Gold
by Katherine Schneider, Reviewed by Janna Stein
2010 NFB CONVENTION
2010 NOPBC Conference
by Carol Castellano
NFB Camp: Convention Adventures
by Carla McQuillan
ODDS AND ENDS
The 2010 convention of the National Federation of the Blind will take place in Dallas, Texas, July 3-8, at the Hilton Anatole Hotel at 2201 Stemmons Freeway, Dallas, Texas 75207. Make your room reservation as soon as possible with the Hilton Anatole staff. Call (214) 761-7500 only. The 2010 room rates are: singles, doubles, and twins $62; and triples and quads $67 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, 2010. 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, 2010, assuming that rooms are still available. After that date the hotel will not hold our block of rooms for the convention. In other words, you should get your reservation in soon.
Guest room amenities include cable television, coffeepot, iron and ironing board, hair dryer, and high-speed Internet access. The Hilton Anatole has several excellent restaurants, twenty-four-hour-a-day room service, first-rate meeting space, and other top-notch facilities. It is near downtown Dallas with shuttle service to both the Dallas-Ft. Worth Airport and Love Field.
The schedule for the 2010 convention will follow that of last year:
Saturday, July 3 Seminar Day
Sunday, July 4 Registration Day
Monday, July 5 Board Meeting and Division Day
Tuesday, July 6 Opening Session
Wednesday, July 7 Business Session
Thursday, July 8 Banquet Day and Adjournment
For thousands of parents and friends of blind children, PARENT POWER means membership in the National Organization of Parents of Blind Children. The NOPBC is a national membership organization that provides vital support, encouragement, training, and information about blindness to members and to the broader community. As an affiliate of the National Federation of the Blind, the NOPBC is a bridge that connects families to blind role models and mentors. NOPBC is also a vehicle for expanding resources for parents, changing public attitudes about blindness, and creating greater opportunities for blind and visually impaired kids everywhere. Your NOPBC membership matters. NOPBC is a 501(c)(3) not-for-profit organization.
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by Deborah Kent Stein
Recently I spoke with an advocate for children with disabilities in the public schools. "I've heard a lot about the NFB," she told me. "You guys are awesome! You really get things done! Too bad you only care about the vanilla blind."
"The vanilla blind?" I repeated. "What do you mean?"
"You know," she said. "Blind people who don't have any other disabilities. People whose only disability is blindness."
This criticism of the Federation is not new, but I believe it is unfounded. In nearly every chapter across the country adult Federationists with multiple disabilities play an active part. Some use orthopedic canes or wheelchairs, some have developmental disabilities, some have hearing impairments, and some have complex medical conditions. Blind children with additional disabilities are woven into the NFB community as well. The NFB Jernigan Institute and the National Organization of Parents of Blind Children (NOPBC) are deeply committed to including blind children with multiple disabilities in our activities and programs.
Statistics tell us that at least half of all blind children have additional disabilities of one kind or another. The combination of blindness and other impairments can affect how a child learns, plays, moves about, and communicates. To educators and other professionals with a strong background in autism, deafness, or learning disabilities, blindness may be a complete mystery. It is sometimes hard to ensure that the blindness-related needs of multiply disabled children are fully met or even acknowledged.
We in the NFB do not claim expertise in autism, dyslexia, or any disability other than blindness. Where blindness is concerned, however, we have a vast reservoir of knowledge based on firsthand experience. We recognize that blind children, including those who have multiple disabilities, need to learn nonvisual techniques in order to reach their fullest potential. We deplore the fact that all too often blind children with additional disabilities fall through the cracks in the education system, emerging ill-prepared to step into adulthood.
This special issue of Future Reflections focuses on blind children with additional disabilities at home, at school, and in the community. Many of the articles are written by parents, and some are the work of professionals who offer original thinking and innovative practical suggestions. Some contributions come from blind adults who have lived with multiple disabilities since childhood. I hope that this issue will show that blind people with additional disabilities are an integral part of the Federation. I hope it will help dispel the myth that the NFB only cares about the "vanilla blind."
by Srikala Naraian
From the Editor: Born in India, Srikala Naraian taught blind and visually impaired students in the United States for eight years. Having earned a PhD in education from the University of Missouri at St. Louis, she is currently an assistant professor at Teacher's College of Columbia University. Her work and her life reflect her passionate commitment to inclusive education.
When I was a teacher of blind and visually impaired children, the greatest impetus to my work came not from my teacher preparation program but from the mentoring and friendships I found through the National Federation of the Blind in Chicago. I remain acutely conscious of this important connection today as a faculty member within a teacher preparation program at a major university. As I prepare special educators to push forward the goals of an inclusive agenda, I adhere to a tradition in academic scholarship that has come to be known as disability studies in education. This tradition uses a "social model" rather than the "medical model" approach to disability that is widespread in many professions. It does not see blindness and other disabilities as deficits within people. Rather, it interprets disability as arising from the interaction of people with social institutions such as education, law, and health care. It goes without saying that this body of work is deeply rooted in disability-rights activism.
In this article I would like to share some thoughts about inclusive education. I am especially concerned with students with significant multiple disabilities. These are the children and youth who often are considered "too disabled" to be included in a general education setting. The concept of inclusive education emerged from within special education as families and educators pressed for students to be moved out of restrictive self-contained classes and placed in general education classrooms. Today the meaning of the term has been broadened to connote schools and classrooms that are hospitable to all learners, particularly those from historically marginalized groups. Within schools, however, inclusion continues to be framed as the placement of students with disabilities in general education classrooms. Consequently, educators speak of "inclusion" classrooms, almost as though other classrooms do not need to be inclusive. Broadening the concept of inclusive education necessarily implies that we cannot put arbitrary limits on who can or cannot be included. All classrooms must be inclusive. All students should be welcomed into the schools and classrooms they would attend whether or not they are disabled.
For too long it has been presumed that inclusion can only work for students with mild or moderate disabilities. Schools all over the country struggle with, and sometimes resist, the inclusion of students with significant disabilities within general education classrooms. It is commonly thought that such students are better served through more restrictive placements that supposedly can meet their unique needs. However, research has clearly shown that the rationale behind segregated placements is flawed. Such placements create an artificial separation between "functional" and "academic" skills. They do not consider the learning opportunities inherent in the myriad interactive experiences that occur within mainstream classrooms. They prepare students for institutional care rather than community living.
In my own research I have sought out classrooms where students with multiple disabilities have been successfully included. My goals have been twofold. I certainly wish to advance our knowledge about the inclusion of students with significant disabilities within mainstream settings. Simultaneously, I use significant disability as a lens through which to investigate how inclusive classrooms can be implemented. Such examination provokes a deeper inquiry into how we understand classroom communities.
I have spent many hours in elementary and secondary classrooms where students with significant disabilities were included. Through my observations I have tried to understand the factors that determined the nature of their participation. I found peers eager to explore relationships with their disabled classmates, expressing their interest in many and varied ways. I have noticed deep relationships forming between students with disabilities and their peers, relationships that were supported by teachers. I talked with teachers who were committed to ensuring that these students experienced safety and security within their classrooms and furthered their academic development. I spoke to therapists who supported these teachers in all the ways they could. I encountered administrators who prioritized family concerns when facilitating the inclusive process.
On the other hand, I also heard some teachers express discontent and even anger at school policies that required inclusion. They worried about the "functional" development of students with significant disabilities who were included, and felt that such "inclusion" policies seemed to discount their professional knowledge in favor of yielding to family wishes. I came to realize that "inclusion" also meant enrollment in special education courses and lower-track classes. I noticed high-school students with significant disabilities being offered preschool texts while their peers worked on literacy goals, or idling in the hallway when their peers were taking tests.
I also observed peers having very little interaction with multiply disabled students outside the classroom. When I met with peers in a series of interviews, they expressed indignation at ways in which the educational program of their classmates with disabilities had been designed. They argued that teachers focused so much on a student's disability that they were oblivious to his/her needs as an adolescent, struggling like other students to make sense of high school. Some peers suggested simple ways that a student with significant disabilities could be drawn into the classroom community. "Like just saying his name," one teen commented regarding Michael, a visually impaired classmate who uses a wheelchair and is largely nonverbal. "You know how a teacher will pull out a student and say, 'So-and-so, are you awake?' It could be like, 'Michael, do you understand that?' When he hears his name he knows he is being talked to." Other peers were outraged that teachers had unthinkingly placed Michael in a girls-only aerobics class.
I found that these students could imagine many scenarios for successful inclusion of students with significant disabilities outside the classroom. They suggested that Michael could take part in a fashion show or have a non-speaking role in a school play. They even described his capacity to care for others and to have meaningful relationships. One of Michael's peers observed, "I could see him helping other people a lot, even if it's just coming into the room and, you know, just being there. He can help anybody. He's just got that type of characteristic where he can just help someone." Such ways of thinking about Michael seemed beyond the scope of most educators.
In all these instances, it seemed clear that the nature of participation of the student with significant disabilities was contingent on the moral stance of administrators and teachers. Did they see students with significant disabilities as legitimate members of the school community? Did they feel that these students should be involved at every level in the school's programs, and did they recognize their capacity to contribute?
It was clear that the practices within schools and classrooms determined the extent to which "inclusion" was successful. The teacher's approach to curriculum and facility with various instructional methods framed the possibilities for participation for all students, including those with significant disabilities. When classrooms were dominated by whole-group instruction, stringent expectations of independent performance, and rigid assignments, there were very few entry points for students with significant disabilities. The teacher also set the tone for interactions of students in the classroom through the climate she/he created. The types of student-student and teacher-student interaction that were permitted, the rules of behavior, and the seating arrangements all made a difference. Equally important were the ways the teachers handled and helped students understand social conflict, peer relations, and questions about disability and ability within the classroom.
I also learned that some common practices of special education have an impact on the participation of students with significant disabilities in the general education classroom. The practice of pulling students from class to deliver instruction in hallways or other "special" rooms, accepted as necessary and reasonable, serves to set the student apart from peers. The "velcroing" of paraprofessionals to students also compromises peers' abilities to recognize their classmate with significant disabilities as a member of their classroom. Teachers' assumptions that the primary responsibility for the students with disabilities belongs to the special education teacher also works against such membership. In deferring to the "specialized" knowledge of the special educators, general education teachers fail to recognize their own expertise in facilitating the social and academic growth of the student with disabilities. Thus both general and special education structures are implicated in the success or failure of students with significant disabilities to participate effectively in mainstream classrooms.
All students want and need to be known by their peers and teachers. They need to be allowed to express who they are in their classrooms. Traditional tools such as speech and writing may be ineffective for some students with significant disabilities. While technology certainly offers some advantages, teachers' creativity in structuring classroom experiences can generate many opportunities for students to come to know each other in ways that might otherwise remain hidden. We need peer narratives that can counter the traditional assumptions that are often made by adults in schools, assumptions premised on notions of a student's inability or incompetence. My studies document that it is always in the context of positive relations with peers and adults that students with significant disabilities emerge as assertive, joyous, curious, naughty, purposeful, caring, and determined.
As educators we need to presume that all our students, including those with the most significant disabilities, are capable of learning and growing. We need to move away from the notion that our students' abilities are innate and fixed. Such a shift will permit teachers to focus less on the presumed problems that students bring and redirect their attention to the kinds of supports that can be made available to them within the classroom. My own research and that of many others has shown that when teachers offer a range of instructional and curricular options, they meet the needs of all learners most effectively. This approach also ensures that students with significant disabilities have maximum opportunities to participate. Instructional approaches that are premised on collaborative learning and the notion of multiple intelligences, for example, offer many points of entry for students with different learning profiles.
The successful inclusion of students with significant disabilities in schools and classrooms, it is clear, is never independent of the institutional context. When we hear educators warn us that inclusion may be possible in elementary classrooms, but will not work at the secondary level, once again it is the severity of a student's disability that is being blamed. What is rarely addressed is the extent to which the structures within secondary schools constrain many students, such as students from immigrant families and ethnic minority groups, as well as students with significant disabilities. Research has shown increasingly that traditional forms of instruction reach a very narrow band of students. In fact, many students respond with disengagement from their entire school experience. New models offer improved ways for all students to access content and demonstrate learning. Such approaches hold much promise for developing more inclusive schools. The extent to which they can be meaningful for students with significant disabilities, however, depends on the recognition that they are important members of the school community and that their presence and participation enriches everyone.
by Natalie Shaheen
From the Editor: Originally from Ohio, Natalie Shaheen is both a special education teacher and a teacher of blind students. She taught in a wide variety of settings before moving to Baltimore in 2009 to work at the NFB Jernigan Institute as an education program specialist. Because she is blind with some residual vision, she did not receive instruction in alternative techniques when she was a child. Today she advocates passionately for all blind children to learn the skills of blindness.
My path to becoming a teacher of blind students differs from that of some other educators. I have spent the last thirteen years working, in some capacity, with students who have autism. Before I left high school I was mentored by a fabulous special-education teacher. Throughout my pre-service training and my first year of teaching I continued to encounter educators who helped shape my personal theory of teaching and learning.
I believe that all children have the capacity to learn. It is my job to work tirelessly to find the teaching methods that best support my students' needs, allowing them to achieve their fullest potential. This theory has been the basis for everything I have done in my career.
I was teaching in the field of autism when the teacher who had mentored me since high school suggested I investigate teaching blind children. I didn't know any blind people or any teachers of blind children. I had received some services in school as a "low-vision" student. The idea of providing such services seemed rather dull compared to the exciting things I was doing every day in my classroom at a charter school for children with autism. Yet, because I had always looked up to the teacher who presented this idea, I took her advice. I enrolled in the local university and began working toward my master's degree while I continued to teach. As I progressed through my coursework I realized that being a teacher of blind students entailed much more than providing the services I had received when I was in school. The field was far more interesting than I had expected.
Degree in hand, I decided to leave the charter school. A part of me was sad to say goodbye to my students with autism. They had challenged me every day to be creative and to improve my pedagogy. At the same time I felt elated by the opportunity to teach Braille and the other alternative techniques of blindness.
When I started my new job I eagerly reviewed the IEPs of the blind students on my caseload. I discovered that many of them had additional disabilities. For me this discovery was exhilarating. I would have the chance to combine my experience as a special educator with my recently acquired knowledge of how to teach blind students. During the next few years I encountered dozens of blind children who had autism. I would like to share some of the ideas I evolved over those years of teaching.
In the National Federation of the Blind we often remind people that the real problem of blindness is not the loss of vision but the attitudes and misconceptions of others. The same holds true for blind children with autism. Far too many educators assume that the existence of a concomitant disability means that a child cannot learn the alternative techniques of blindness. These children fall through the gap that exists between teachers of blind students and special educators who work with autistic children. Some teachers of blind students write off blind kids with autism because they don't have the knowledge of best practices used with autistic students. At the same time, special educators do not know what to do with these children because their knowledge of blindness is so limited. Consequently, the system often fails to educate students who are both blind and autistic.
As a teacher, I often felt the most important role I played was that of public relations manager. My blind students with autism were not well liked. Their aggressive behavior was generally cited as the reason they were so unpopular with professionals. Colleagues repeatedly made comments about my students that broke my heart. My students were treated as second-class citizens within the school community. Most of them had never received instruction in Braille or cane travel, despite many years of education. The only useful skill many of my students had learned at school was how to manipulate the adults around them. They knew exactly how to use negative behavior to get what they wanted.
Armed with my theory of teaching and learning, I set out to change the attitudes of the professionals in the schools where I worked. I knew I had to change their thinking if my students were ever going to receive a quality education. I spent a great deal of my time publicizing the accomplishments of my students. I displayed their work on bulletin boards in the halls. I wrote a weekly newsletter that I distributed as widely as I could. I praised my students for their real accomplishments, not just because they showed up at school. My methods were not revolutionary, but my message certainly was.
At first my PR work backfired. When people learned that I was teaching Braille, abacus, and other alternative techniques to students who were blind and autistic, they criticized me harshly. "Bobby can't attend to anything other than music for more than five minutes!" I was told. "You think you're going to teach him Braille?"
I wasn't entirely sure how to teach alternative techniques to my students, but I refused to believe it was impossible. For answers I turned to the educators who had mentored me. I bounced ideas off the teachers at the charter school where I had taught. They didn't know anything about Braille, but they were well-versed in the best practices of autism. I contacted other professionals in the blindness field to get their feedback on the strategies I intended to implement. I also read everything I could find about educating blind students with additional disabilities. After gathering a wealth of information and feedback, it was time to put my plan into action.
Phase One required me to create a classroom environment that would allow the students to be successful. I had to provide all the supports commonly found in the classrooms of sighted students with autism. I developed a schedule for the class that was as consistent as possible. I translated this schedule into a tactile form, using the tactile symbols that already existed in the school. The students could not yet read their names, so I assigned each child a personal tactile symbol. The symbol appeared on all of the student's belongings next to his/her name in Braille.
I incorporated positive behavior supports as a part of the classroom management plan. The classroom was free from clutter. The various learning areas in the room were well defined so the students could more easily predict the activities that would take place in each area.
Phase Two of my plan occurred almost simultaneously with the first phase. I felt it was imperative that the students no longer be deprived of Braille. I acquired Braille in every format I could. I gathered Braille books and put them on shelves in the reading corner. Everything that appeared in the classroom in print also appeared in Braille. Nearly every surface in the room was adorned with a Braille label or a tactile symbol. I brought Braillewriters into the room and placed them where the children could reach them easily.
The students had no literacy skills, so my instruction started with the most basic concepts. I wrote stories about my students' favorite school activities. I Brailled the stories and illustrated them with homemade tactile graphics, often including real objects. I read the stories with the students and they placed their hands over mine as I read. The students also became acquainted with the Braillewriter. They started with scribbling as a means to discover how the machine worked.
I knew that forty-five minutes of language arts each day would not allow the students to catch up on their Braille skills. To provide more learning opportunities, I tried to incorporate Braille into other parts of the day. Each of the students had reward systems that incorporated a token board. The board had six tactile circles, set up like a Braille cell in two columns of three. Each time the student earned a token for appropriate behavior, she/he placed it in one of the circles. The children counted their tokens according to the numbering system for the Braille dots. Consequently, the dot numbers of the Braille cell were reinforced dozens of times each day. I often included literature in math lessons, which also gave the students increased access to Braille.
The first two phases of the plan were the most important and the most effective. Other phases of the plan included acquiring orientation and mobility assessments for the students, teaching appropriate social skills, teaching the beginner abacus and other basic math skills, and teaching simple social studies concepts. The plan was not perfect, and I made adjustments as problems surfaced.
As the school years passed, my colleagues gradually came around. They began to work with me on improving the education of our blind students with autism. The more I was able to collaborate with my colleagues, from related-service providers to administrators, the more refined and effective the plan became.
Leaders in the blind community must work with educators to eliminate misconceptions about all blind students, including those with additional disabilities. All students possess the capacity to learn, and students with multiple disabilities are no exception. In order for a blind person to be successful he/she must acquire the alternative techniques of blindness. We must fight for the rights of all blind children to learn alternative techniques throughout their years of compulsory education.
Finally, we must not give up when traditional teaching methods are not successful with a particular student. It is the job of the educator to find the proper strategy to teach a child; it is not the job of the child to conform to traditional methodology!
by Editha Jones
From the Editor: A few months ago Editha Jones called me to request a Braille pen pal for her daughter Michelle through the Slate Pals program. The more we talked, the more I knew I wanted her to write about her family for Future Reflections. She graciously agreed to share her story, and here it is.
I live in a small town in Georgia. My husband and I have six children and four grandchildren. I grew up in a big city and had a number of health problems as well as limited vision. After graduating from a small-town college I married a man who shared my dream of adopting children with special needs.
My husband and I raised three birth children, and I was diagnosed with multiple sclerosis (MS). The MS weakened my right side and made it hard for me to walk. I began to use a wheelchair or a go-cart to get around on the street. MS never shook my desire to become an adoptive parent.
Finally our dream of adoption became a reality. The Lord has blessed us with three beautiful girls from India, each with multiple challenges. Marie has been with us nine years. Michelle has been with us seven years and Makaily four years.
Marie joined our family at the age of one year. Her grin could melt anyone's heart. She has craniofacial syndrome, a condition that caused her to be born with a cleft palate and a bifold nose. She is blind in one eye and has a ninety-five percent hearing loss in both ears.
Michelle joined our family close to her third birthday. Her gentle hugs could calm anyone. She is blind with light perception only, due to congenital glaucoma. When she came to us she was developmentally delayed. She was not talking and was thought to be deaf. She kept her clutched hands hidden in her clothes and was not yet walking. She had learned to be totally dependent on others and her mental abilities were unknown.
Makaily was three and a half when she joined our family. Her happy smile, full of giggles, can brighten the darkest moment of any day. When we brought her home we thought she had craniofacial syndrome like her sister, but she was later diagnosed with a rare condition called Fraser's syndrome. Fraser's syndrome caused her eyelids to be fused shut. She has malformations of her eyes, ears, nose, middle fingers, and right foot. There are also many other health issues related to this syndrome. Makaily could not see, hear, talk, walk, or use her hands to play normally. She was severely delayed and her future potential was uncertain. She was rated at the developmental stage of a newborn when she came home.
To outsiders, parenting children with multiple disabilities can appear to be overwhelming. By pulling your family, support system, and other resources together you can succeed as a parent, enjoy your children, and even have a few moments to relax!
The discovery that your new child is challenged in some way sparks many emotions. My experience caring for my children has taught me that with prayer, patience, and perseverance you can find peace and acceptance. You can come to see beyond the medical condition and find the joy of loving your child just as he/she is. Each family's story is different, but the emotions are the same whether the child is birthed or adopted.
We were very excited to meet each of our new children after months and/or years of waiting. From pictures we knew what their faces would look like. Yet, when we actually met each of our girls at last, I felt a mixture of emotions. Through my tears of joy I still experienced the feelings any new mom might have when holding a multiply challenged child for the first time.
The first time I held Makaily I needed to close my eyes until I was ready to look into the blank space where her eyes should have been. I had looked at her pictures many times before, but I still closed my eyes. When I opened them again I could see past her face to the pure, innocent, beautiful soul of my child within.
One-year-old Marie and three-year-old Michelle and Makaily lay in my arms as limp as newborns. They seemed so small, helpless, and scared. I had never dreamed about the time they would take their first steps or say their first words. I did not know if they would reach those milestones. But as I held them close and felt the warmth of their bodies, a feeling of peace and acceptance filled my heart. I made the connection to each of my new children. Each one was the child we had been waiting for, our blessing, our gift. I breathed a deep breath and uttered a prayer of thanks. We are now together. We are now a family. I never knew exactly how I would reach each deafblind child we brought home or what the future held, but I was determined to help my little girls meet their potential.
The parents of all adopted children must make adjustments, whether or not the children have additional issues. The adoption of toddlers brings a special set of concerns that are not present with other age groups. I found some very helpful books on adoption issues. WACAP, our adopting agency, was also supportive. With their help I felt confident as we entered into each of our adoptions.
The search for resources for our daughters was a painstaking, time-consuming process. In our small town there simply are no services for children with their disabilities. The big city four hours away has specialized services for the blind, the deafblind, and the physically disabled. But all of those wonderful programs are four hours away from us. We felt uncertain and alone, but I was prayerful and determined to find what we needed.
At first we got help for all three girls through an organization for the deafblind that gave us technical assistance. As the girls made progress we no longer needed this service. I found that the Hadley School for the Blind offered a correspondence course on raising children with multiple disabilities. That course gave me a lot of information and ideas. All three girls attended a pre-kindergarten for special-needs children through the public school.
We have involved our children in community, social, and sports events. Some of these activities are geared for the blind and/or disabled and others are designed for the general public. The girls are involved in church activities, family camping, summer camps, horseback riding, roller-skating, and school events. Each of the girls attends the local public school. The school has tried hard to meet their individual educational needs.
Today Marie reads lips, talks, cares for her own eye shell and hearing aids, attends regular fourth-grade classes using auditory trainers, and enjoys being an active ten-year-old. She loves to talk and does not consider herself disabled in any way.
Michelle uses her cane to travel independently throughout her school. She maintains an A average in a regular fourth-grade class. Due to weakness in her hands she had trouble learning to read and write Braille, but she wanted to learn even when others warned that it would be impossible. After playing the piano and learning to write with a Perkins Brailler she began to be able to read. She is still slow and tracking is hard for her, but with daily practice she is improving. Last month she read a simple Braille book to the preschool children at the local library for story hour. She enjoyed reading for the Braille Readers Are Leaders contest and likes to hear from her Slate Pals.
Last year we heard about the Talking Typer computer program for teaching keyboarding skills to blind children. After working on it all summer, Michelle types her notes and schoolwork on her laptop. She uses a talking calculator for math.
Michelle likes to roller-skate and sing, and she plays the piano by ear. She is active in church and sports. She enjoys soccer and basketball with the Challengers sports team in the next town. She sings with a girls' singing group for the local nursing home.
Michelle wants to be a special education teacher someday. Helen Keller is her hero. For a school assignment last week Michelle wrote a very persuasive paper entitled, "Why I Need My Own Cell Phone."
Makaily is walking now, and she is learning to use a cane. Developmentally she is at the level of a two-year-old. She uses a tactile communication device and attends a special-needs class at the public school.
"What did you do to get them to this point?" people often ask. Before the girls came home I began by refreshing my study of child development patterns. I chose to encourage the normal development patterns of a newborn, though my girls were toddlers. I made a chart of simple goals I wanted them to reach and broke each goal down into many ministeps. I set no timeline. I did not know if the girls would be five or fifteen before they reached each step.
It takes great patience to stay with a goal for months or years without any visible progress. Often I was swept with doubt, but I could not convince myself to stop trying. Each child blossoms at her own pace and within her own level of achievements.
Because the girls were all thought to be deafblind when they arrived home, we used dual signing and speech as our first form of communication. This was a challenge. I was trying to learn signs, Braille, and total communication skills all at the same time. At fifty years of age I did not learn as quickly as I thought I should, but I managed to stay one step ahead of the children. I spent the first two months at home to bond with each child. It gave us a chance to form family routines, understand the child's needs, and assess her potential. After the first two months I felt comfortable with my assessments and goals.
Next we undertook the many therapies and surgeries needed to improve the girls' physical conditions as much as possible. This is an ongoing process. The hospital knows us on a first-name basis. I still do not like doctor's visits, and I really enjoy the months when we only have to go two or three times.
Marie had several craniofacial surgeries and ear tubes were placed in her ears. Her hearing improved enough for her to use hearing aids. She began to sign by age three. By age five she was lip-reading and talking.
Michelle needed foot braces for her ankles and began walking by age four. After many hearing tests it was determined that her ears worked but her brain was not responding to the sounds she heard. I was determined to teach her how to hear. She seemed to respond best to songs. For a year I repeated the same songs over and over again, and finally she began singing them back to me. By age five she could say simple sentences on her own, but she still echoed much of the time.
Makaily needed many surgeries to correct her bent fingers and clubbed foot. After tubes and continued doctor care she can now hear high-frequency sounds and respond to simple commands. Her foot is still bent some, but she can put weight on both feet.
Michelle was thought to be mentally challenged due to her poor hand coordination and language skills. For three years we worked stubbornly toward my minigoals to improve her language. She was retested and placed in the normal range. Language is now one of her strong points. She has a great memory and she is a good speller. This year she was transferred from the special-education classroom to a regular fourth-grade class with a paraprofessional. She spends two to three hours nightly working on homework and minigoals, but I make sure she takes time to relax, too.
After trying for four years to work buttons, Michelle can now dress independently. She was able to roll the Braille paper into the Brailler all by herself just this past week!
Makaily has the most challenges. She still cannot talk. Total blindness complicates the learning process for her and has its own set of challenges, but communication, mobility, eating, and potty training are her biggest challenges. She gets very angry when she can't express her needs or go where she wants to go without help. She still lacks confidence to walk far by herself, but recently she took twenty steps on her own down the school hall.
Makaily went through many stages to reach this point with her walking. She began with a gait-trainer. Once she could walk while holding my hand, the physical therapist made her a pre-cane with wheels. She then switched to an NFB training cane until she could hold her own cane. She would not walk without someone touching her shoulder or shirt tag until last month. I gave her a string to hold and led her around holding the other end. One day she took the string from me to play with, and she has been walking independently ever since.
Makaily enjoys skating, and she took eight roller-skating steps by herself last week. She kicked the soccer ball all the way down the field, just to touch the net. She nods "yes" to ride the horse again, and she won the "splish, splash" award at the Lions Camp for the Blind for her swimming acts in the water. I never know what she will like until we try it, so we try everything.
I do not know whether Makaily will ever be able to read Braille, but we are working on it. I write Braille letters on the wall with thumbtacks so she can get used to touching them. She scribbles "alalala" with the Perkins Brailler and throws away any book that does not have "bumps" on its pages.
We continue working on Makaily's goals daily. They include walking ten steps to the bathroom independently, feeding herself five bites of food, saying "Mama" one out of five times instead of banging her head for my attention, shaking hands when someone says "Hello," setting five spoons on the table for supper, carrying her cup back to the refrigerator without dropping it, taking clothes out of the dryer and putting them in the basket, and driving her riding toy through the house without help.
I think it is important to celebrate each success in some measurable form. We have had parties for eating enough when a child finally reached a weight of forty pounds. We had a sleepover with friends to celebrate the first time Michelle unbuttoned her sweater independently. Congratulation balloons are a fun way to celebrate a success. The day Makaily stood alone for the first time, I was so happy I called everyone who would listen. Makaily's smile as she stood holding the bag of things she got for standing by herself was the best yet.
It is fun to make scrapbooks full of pictures or tactile mementos to remember the little successes. You can record the activity and date on an audiotape and add a celebration song to go with it.
I try to make learning fun and turn it into a family activity we can laugh about. Laughter is like sunshine. We all need a daily dose.
My mom once told me to think like a clock and take only one tick or tock at a time. Some days we all need to take one thing at a time, remember to hug our kids, smell the flowers, and count our blessings.
As the parent of a child with multiple disabilities, it is important to recognize and accept your child's limitations. It is even more important to think about your child's strengths and abilities. Find a way to work around the limitations and reach the child within. Love can be a driving force. Parenting several children with multiple challenges can be rewarding even when your plate is full. It takes a lot of prayer, patience, and persistence to overcome our own limits, too!
Each smile from your child can dry a thousand tears and become a priceless memory to keep in your heart! Enjoy the blessings your child brings you today!
by Caryn Navy and David Holladay
From the Editor: In many families, religious milestones are crucial turning points, marking a child's entrance to full participation in the community. For a blind child with additional disabilities, such rites of passage may present unique challenges. In the article that follows, David Holladay and Caryn Navy of Massachusetts describe how their daughter Diya prepared to reach one of the most important milestones in the Jewish tradition.
Just before the closing prayers at the service where Diya became a bat mitzvah, she danced joyfully along with other children and adults. The energy and pride bubbled over as a stirring klezmer song celebrated Diya's accomplishment. We were all moved by her poise and the clarity and beauty of her voice as she led parts of the service and chanted from the Torah. We listened with rapt attention to the rabbi's moving description of Diya and her journey toward this day.
Diya came to the United States from India when she was twenty-one months old. As she was getting used to her new home, she encountered Jewish family and community life for the first time. It was during her first year with us, at a community Jewish holiday celebration, that a friend in the congregation who was a speech therapist suggested that Diya might have autism. Our friend also told us that autism is hard to diagnose in blind children since they often have autistic-like behaviors that they outgrow.
Over the next few years Diya's preschool teachers and others often raised the question of autism. Diya was reluctant to play with toys, and she had very limited verbal interactions. She would answer no by saying, "No," but to answer yes she would repeat the question. Diya was finally diagnosed on the autism spectrum by a developmental pediatrics team, but we always felt a little uncertain.
In addition to regular preschool, Diya attended a Sunday preschool class in our congregation for one year. The kids learned about Jewish holidays and other topics with their parents. Though Diya didn't tune into much of the learning, she fell in love with counting from one to ten in Hebrew. Since Diya had a hard time speaking, it was often helpful to give her a structure in which to insert her own words. One structure that Diya liked was the pattern of some Hebrew words followed by, "I am thankful for the gift of . . ."
In regular school a special IEP team helped identify and meet Diya's needs. In an extracurricular religious school program, however, those familiar resources wouldn't be available. Or so we thought. Then, almost by accident, we learned of a program in the Boston area called Etgar L'Noar (Hebrew for "the children's challenge"). This innovative program provided religious school classes for kids with special needs. In her kindergarten year at regular school, Diya began attending a Sunday class at Etgar L'Noar, which later became part of the larger program called Gateways: Access to Jewish Education (<www.jgateways.org>). Diya has continued to attend Sunday classes at Gateways except for one year. One of the things she loves about going to Gateways on Sunday is the long car ride with Daddy.
When Diya first attended the Sunday classes, she was very timid and barely spoke a word. Over the years she became comfortable with the other children, staff, and volunteers, and allowed her light to shine through. One of the things that we love about Gateways is the system of having a teenage volunteer for each student. Diya and her special teenage buddy always bond well. There were no other blind children in Diya's Gateways classes, but the staff and teachers learned more each year about the activities that work well for Diya. Music and dance are at the top of her list.
Gateways has a special two-year Thursday class for kids preparing for the service where they would become a bar or bat mitzvah. (The term bat mitzvah means "daughter of commandment," and bar mitzvah means "son of commandment." In common usage the terms bat mitzvah and bar mitzvah often are used incorrectly to mean the service when a young person undergoes the rite of passage.) Each student has a tutor who works with her/him one-on-one.
When Diya was twelve, we pondered whether to have her prepare to become a bat mitzvah. Would it just be something for us, or would it be meaningful to Diya herself? Diya had attended several bar and bat mitzvah services, including the one for her brother Seth. If she had a bat mitzvah service, we wanted the celebration to help our extended family and community recognize her as an individual.
We took our cue from Diya. Yes, she wanted to become a bat mitzvah. She started the preparation class at Gateways, with long Thursday afternoon drives with her after-school caregiver.
In the program Diya would have to learn to lead some of the blessings, prayers, and songs that are part of our congregation's Saturday morning service. She would also learn to chant a portion of the Torah. The Gateways staff was very uncertain how Diya's training would work. That's where their experienced tutor, Paula Korman, came in. Paula is a pioneer in special-education issues in the Jewish community. "I'll be Diya's tutor," she said firmly.
Diya and Paula quickly felt an affinity with each other. "Diya and I have similarities," Paula observed. "We're both auditory learners. Diya speaks intermittently, but her ears are magnets. I can teach her through her talents for music and singing." Since a bat mitzvah is all about growing up and becoming an adult, Paula worked hard to treat Diya like a young Jewish woman, and she emphasized that role to Diya.
Through hard work with her dedicated one-on-one aide at school, Mrs. Snyder, Diya's Braille skills were starting to blossom. Mrs. Snyder used rhythm to draw Diya into writing with a Perkins Brailler, tapping out the patterns of the dots that formed each letter.
While writing and reading English Braille were coming together for Diya, nobody wanted to make the pot boil over by adding Hebrew Braille to the mix. Brailling out the Hebrew text, transliterated into English, might have been helpful. However, transliteration was never considered an option for any of the other kids, and it was not considered for Diya either. She learned the Hebrew blessings, prayers, songs, and Torah portion of the service orally. Since music and rhythm are among Diya's strengths, she learned well with this method. She did use Braille to practice her answers to questions on her Torah portion for a dialog with Daddy after the chanting.
As she had more practice sessions, Diya became more confident and proud of her accomplishments. Nevertheless, she was still very inconsistent. Some days she spent more time laughing than practicing.
Coordination with our congregation was another major piece to be folded into the preparations. Usually the kids preparing for this milestone have been going to religious school at the temple. The rabbi gets to know them and they have many opportunities to communicate. Our rabbi, Shoshana Perry, didn't really know Diya yet. She worked hard to change that and to plan with us. She has a gift for recognizing the uniqueness of each bar or bat mitzvah student and building the service around the student's special qualities.
Rabbi Perry helped us find a congregation member to work as a local tutor for Diya. The sessions with Paula were in a very different setting, and it was important for Diya to have a few practice sessions in the sanctuary with her local tutor. At home we tried to be more consistent about observing and including Diya in Jewish rituals, such as lighting the Sabbath candles. A few times the rabbi also arranged for Diya to lead the candle lighting blessing with us at Friday-night services. The first time we couldn't hear Diya's voice, but the next time it was clear and strong. Diya also attended bar and bat mitzvah services for other kids in our congregation and for other Gateways students.
It is common for parents to present a tallith (prayer shawl) to their young adult as a gift at their bar or bat mitzvah service. Our search for a meaningful tallith for Diya led us to a wonderful artist in Australia with a business called House of Rose. She made a tallith for Diya partially of silk brocade from India. The painted design, which is also tactual, shows lotus flowers. In India the lotus is a symbol of beauty and growth toward the light. We felt as if our new friend from Australia would be at Diya's bat mitzvah ceremony beside us.
Each bat mitzvah student at our congregation is asked to keep a journal about the mitzvot, or good deeds, she performs. Diya wrote about her effort to listen to the shofar, or ram's horn, during the High Holiday services; the piercing sound was painful to her ears, and she was happy that she was now able to hear it without distress. She also wrote about how much she likes to help and guide other people.
In addition to Diya's own reflections, her mom described a number of incidents that show Diya's compassion. Here are a few excerpts: "Diya watched the movie Praying with Lior. She says that she did not like it. I think the part that was the hardest for her was when Lior was crying at his mother's grave." . . . "Diya tries to make peace between people. Sometimes in the car she would say, 'Talk about George Bush.' Eventually we realized that she said that when David and I were disagreeing about something. She knew that we agreed about George Bush and she wanted to help us be in agreement."
As the date for Diya's bat mitzvah service drew closer, we dealt with countless details to prepare for the service and the party to follow. Sometimes we had to remind ourselves what it was really all about. We had to make sure not to lose our focus on Diya.
On the morning of the bat mitzvah service we gave Diya some of her favorite foods from her gluten-free, casein-free diet. We wondered anxiously whether all Diya's preparation would pay off. As it turned out, we need not have worried. A friend in the congregation wrote to us afterward, expressing the beauty and richness of that extraordinary day in our lives. "Diya was a joy to listen to as she chanted many prayers, and it was wonderful to watch her relationship with Seth, the two of you, and her teacher. She chanted the prayer for Torah before the Torah reading. I thought someone else would read the Torah portion, but how wrong I was! She just continued right into a long Torah portion and the closing prayers. True, her teacher stood with her and from time to time helped her continue, but Diya really did it all. Her voice and demeanor are sweet. There was hardly a dry eye when the three of you spontaneously got up and danced in the front of the sanctuary to one of Diya's favorite songs. Then more joined in, including the many Gateways students present, and soon the entire congregation was dancing in the aisles and at their seats. All in all the day was so good it is off the charts! My tears were tears of pride and joy. Even Rabbi Perry admitted that she was holding her emotions in check, but that she no longer could, and she shed a few tears with all of us."
by Mary Tellefson, MA, MS, TVI, COMS
Wisconsin Center for the Blind & Visually Impaired
Reprinted with Permission from DVIQ, Vol. 54, No. 3, Spring, 2009
From the Editor: This article describes an innovative strategy for encouraging young deafblind children to begin using the long white cane. The teaching cane strategy can also prove valuable for introducing the cane to other blind children, with or without additional disabilities.
The world-renowned deafblind educator, Jan van Dijk, describes the following four major developmental areas that are impacted by deafblindness (van Dijk, 1999): (1) access to sensory information; (2) communication and movement; (3) incidental learning, including concept development and mental imagery; and (4) emotional development, including sense of self, motivation, perception of safety, and isolation. The cane is a tool that addresses these areas of development by increasing the availability of sensory information to a child through auditory, tactile, kinesthetic, and vibratory feedback. Cane use promotes active movement, contact with the world, opportunities for exploration, and a sense of safety.
The teaching cane strategy, a process put forth by this author, is an approach to early cane use. It facilitates all areas of development and has valuable applications for children who are deafblind. It is a role-release approach in which an orientation and mobility specialist teaches the adults, including parents, who work most closely with a child to use a cane in the child's presence. Subsequently, once a child expresses an interest in an adult's cane and joins with the adult in handling it, the child receives his or her own cane.
The term "teaching cane," which was first introduced by pediatric orientation and mobility specialist Joe Cutter (2007), refers to the canes of both the adult and the child, since both are used to teach the child. Rather than requiring a child to demonstrate an ability to use a cane before it is introduced, the teaching cane strategy promotes early cane use as a way to facilitate the development of fine motor, cognitive and sensory skills.
The decision about whether, or when, to begin using the teaching cane approach depends on a child's spatio-temporal development and physical ability, the level of support for the process from parents or other caregivers, and the availability of an orientation and mobility specialist who is comfortable with a role-release model of service delivery. When using a role-release approach, the majority of the orientation and mobility specialist's time is spent observing and coaching parents or other important adults in a child's life. Because of their consistent relationship with the child, these adults are in a favorable teaching position.
Learning to use a cane is a process during which individual differences are acknowledged and addressed. Children as young as one year of age may be introduced to a cane using the teaching cane strategy. As a child matures, so does his or her use of the cane. The four stages of the strategy are described below. Best practice applications from the field of deafblindness can be integrated at each stage.
An ability to walk is not necessary in order to use the teaching cane strategy. The only requirement is the ability to hold the cane in a manipulative grasp. Children transported in wheelchairs or strollers can use a cane for tactile and vibratory feedback, extending reach, previewing a walking surface, and exploring.
The purpose of the first stage is to create conditions that encourage a child to become aware of the cane and how it is used during daily activities. This is accomplished by teaching adult role models (e.g., parents and teachers) to use the cane. As role models use the cane during everyday activities, the child may notice their movements or may notice the cane itself. The cane becomes a potential topic of conversation (Miles & Riggio, 1999).
Role of the Orientation and Mobility Specialist:
When a child begins to express interest in the adult's use of a cane, it is time to encourage him or her to participate in its use. The goal of Stage Two is for adult role models to learn to recognize and reinforce child behaviors that indicate interest in the cane and to apply individualized strategies that facilitate a child's understanding and participation. This should be based on a child's level of interest and motivation. At no time during this stage should the cane be forced on a child with direct instruction.
Children express interest in many different ways. The adult should observe the child for behavioral signs that indicate the child has noticed some aspect of cane use. For example, the child may reach for the cane, pause while walking, turn toward the cane, or show increased excitement or stillness when exposed to the cane. These are critical moments during which an adult should respond to the child's expressed interest.
A child may participate in cane use by hanging on to the cane while the adult moves it back and forth or makes contact with an object. If the cane is long enough, the adult can invite the child to walk in front, placing his or her hand on top of the adult's hand to hold the cane together. The vibration or sound produced when the cane contacts an object has meaning for the child if he or she is made aware of the object the cane has encountered. The child is encouraged to follow the shaft of the cane with his or her hand to the object for tactual exploration. At some point the child may show a desire to control the cane for him/herself. This suggests that the child is ready to move to Stage 3.
Role of the Orientation and Mobility Specialist:
• Celebrate and reinforce the power of mutual attention during cane use.
• Demonstrate and discuss strategies that promote the child's participation.
• Discuss the importance of multi-sensory experiences paired with communication (sign, voice, objects) to verify sensory information received through the cane.
Once a child's interest and coactive participation indicate readiness or a desire for a cane, it is time to help him or her experiment with it. The child can be encouraged to discover the possibilities the cane offers for learning about the environment through inspection, exploration, and play. Avoid the assumption that a child will automatically know what to do with a cane or will be able to imitate the adult role model. A child may initially reject his or her own cane. Even though the child has already been exposed to an adult's cane, his or her own cane may be perceived as a new object. Using the child's cane together (coactively) as described in Stage 2 with the adult cane, may be a necessary first step.
Because of the cane's ability to provide auditory, tactile, and vibratory feedback and facilitate physical, cognitive and social growth, a child who is willing to interact with it is learning. A child who is able to use familiar tools, such as a spoon, toothbrush or comb, may independently be able to experiment with the cane as a tool (Cutter, 2007). Opportunities for the child to use his or her cane are given during family "cane walks." In a cane walk, parents and siblings, if included, use their canes as well. Malls for indoor travel and parks or residential neighborhoods for outdoor travel are examples of environments that are interesting to explore. Conversations can be sparked by objects, sounds, textures, vibrations, and smells.
Role of the Orientation and Mobility Specialist
When developmentally appropriate, the child's use of the cane is shaped toward its intended use as a travel tool. Through continued modeling and direct instruction from an orientation and mobility specialist, a child's use of a cane increasingly approximates formal cane techniques in form and function.
Travel becomes oriented toward a task, activity, or destination, and the child becomes increasingly mobile under his or her own power.
Role of the Orientation and Mobility Specialist
Cutter, J. (2007). Independent movement and travel in blind children, A promotion model, Charlotte, NC, Information Age Publishing.
Jensen, E. (1998). Teaching with the brain in mind, Alexandria, VA, Association for Supervision and Curriculum Development.
Miles, B., Riggio, M. (1999). Remarkable conversations, a guide to developing meaningful communication with children and young adults who are deafblind, Watertown, MA, Perkins School for the Blind.
Roman-Lantzy, C. (2008). Cortical visual impairment, an approach to assessment and intervention, New York, NY, AFB Press.
van Dijk, J. (1999). Reaching our students with Jan van Dijk, Fort Worth, TX, conference handouts, November 4.
by Treva Olivero
Reprinted from Future Reflections Special Issue: Cane Travel and Independence, Volume 27, No. 2
From the Editor: Treva Olivero is an education program specialist with the NFB Jernigan Institute. She lives in Baltimore with her husband, Tony.
Although my parents tried to shelter me when I was growing up, I inherited their self-determination, which in turn fueled my desire to be as independent as possible. My parents exhibited their self-reliance by asking for assistance only rarely. They didn't file for Supplemental Security Income (SSI) for me, even when they were eligible. In financially difficult times, instead of asking for aid from our extended family, the church, or the government, my mom got a second job to help support the family. When my siblings were older, they were also expected to get jobs and be independent.
For me, however, the standard was different. Although I didn't want to rely on the government, my parents urged me to apply for SSI when I turned eighteen. Even after I demonstrated my ability to listen for traffic and make good travel judgments, they wouldn't allow me to travel independently on the rural road where we lived. Despite what they said to me, I chose to follow their example of self-sufficiency. I refused to let my disabilities get in the way of my desire for independence.
I was born legally blind, and for me my blindness has always just been another part of my life. I haven't always known how to deal with situations surrounding my blindness, but I do not dwell on what life would be like if I weren't blind. However, I haven't always used a wheelchair. When I was five years old I was diagnosed with a bone disease. I could still walk until age eleven, when my right leg was amputated above the knee. Although I went through physical therapy, I was never able to walk normally, and I have used a wheelchair ever since. I didn't want to let being in a wheelchair stop me, but I always wished for the ability to walk again.
Throughout high school and college, I got by, mostly by using the little remaining vision I had. However, after toppling down several flights of steps and falling off a curb into a busy street, I had to admit that my vision was getting worse. It was no longer reliable. For a while I dealt with this by limiting my activities and only going to familiar places. When I did travel to an unfamiliar place, a sighted person usually went with me to push my wheelchair.
I continued getting by until I attended my first National Federation of the Blind convention in Louisville in 2002. There I met a blind man who traveled the hotel independently, successfully using a cane from his wheelchair. I had always thought that as a wheelchair user I couldn't use a long white cane. During high school, my orientation and mobility instructor told me that instead of using a cane I should put a tall pole with an orange flag on the back of my chair so that people in cars could watch out for me. I never took this advice. The flag looked ridiculous and was extremely cumbersome when I traveled indoors. Furthermore, this solution took responsibility for my safety out of my control. Now, in Louisville, I was amazed by the idea that I could travel with a cane.
I immediately bought an NFB cane and started using it at the convention. Suddenly I felt free to travel on my own. I didn't have to wait for my coworkers or strain to look down to see the curb cuts. I was no longer limited in my travels.
It took me a while to adjust to using a cane, but I persisted. Since I first started using a cane, I have learned some tips through trial and error. I want to share them so that others, too, can put them to use. I hope that parents and teachers of blind children who use wheelchairs will take what I have learned and will help these children travel independently.
1. Your child can use a manual chair and a cane. I prefer a manual chair because of its portability. Since I don't have a car, I need a wheelchair that can fold up and fit into almost any vehicle. Grasping the handrims of my wheelchair with each hand, I hold the cane in my right hand at the same time. I can push both wheels while holding onto the cane and arcing it with my right hand.
2. Training in the techniques of nonvisual travel is essential. I have not had extensive training with sleepshades, but I have discovered that when I do activities nonvisually I am more observant of my surroundings. I wish I had received training under sleepshades in high school or before I went to college. From my blind friends who obtained such training I know it would have increased my confidence significantly.
3. Find the cane that works. I currently use a sixty-one-inch fiberglass NFB straight cane. The length of the cane helps me to make a wider arc, and the narrow handle works best for me because I can grip it and the handrim on my wheelchair at the same time. I didn't start out by using a straight cane. I thought it would be easier to store a telescoping cane, but I became frustrated because my cane randomly collapsed. Now, after using the straight cane for a while, I have discovered that it really works well, and the inconveniences are minor.
4. Make your home wheelchair accessible. Your child needs to be able to get into and around the house independently like any other kid. For a while my parents carried me up the steps, but this limited my independence because I couldn't go outside on my own. Eventually they made the necessary changes, and I could come and go freely.
5. Sometimes it's better not to use your cane inside. Like many blind people who do not use chairs, I have discovered that in familiar places, such as my home, I don't need the cane. I don't always use it in unfamiliar places, either. For example, it's easier to go through interior doors, which are usually not very wide, without the cane in use. I tuck my cane under my chin and grab onto the doorframe with my hands. I can feel where the door is, line myself up, and pull myself through.
6. It's okay to travel slowly when necessary. For safety, I slow down when I am on a downhill slope or when I come to an intersection and need to find a curb cut.
7. Educate others. People don't understand how I travel independently. I talk to them about it and explain how my blindness and being in a wheelchair are not barriers for me. For example, recently I was out shopping with my husband when I encountered a man who was trying to give me directions to a ramp. He had seen me stop just before getting to a flight of stairs. He was extremely worried that I was going to fall down the stairs. I explained to him that I was using my cane. He was trying to tell me how to get to the ramp, but his directions were horrible. I explained to him that I would find the ramp by myself by using my cane. I told him that if I discover it myself, it would be easier for me to find the ramp in the future. He left me alone, and I successfully found the ramp and was on my way.
8. Let your child be independent. Don't push your child's wheelchair just because you don't think he or she can travel independently. Sometimes I let my husband, Tony (he's blind, too, but does not use a wheelchair), push me because it is the best way for us to walk together "arm in arm," but I value my independence. For example, when you're at the mall with your child, he or she will most likely want to be independent. Don't take this away by pushing your child's chair.
Here is my final advice. Don't limit your child just because of blindness and being in a wheelchair. It may be doubly tough to get stared at in public while your child learns to wheel and cane at the same time. Remind yourself that your child will someday thank you for believing in him or her. I'm independent, and your child can be independent, too.
by Kathy Gabry
From the Editor: Kathy Gabry is a founding member of Parents of Blind Children New Jersey (POBCNJ), and has served on its board for at least seventeen years. With
Carol Castellano she is coeditor of the POBC-NJ newsletter, In Touch. She also edits The Sounding Board, the newsletter of the NFB of New Jersey.
The journey is one I'd never anticipated, yet it's taken me to people I admire and to a life I've never regretted. When my son was born deafblind twenty-one years ago, I had never before met a blind person. I knew people with Down syndrome, multiple sclerosis, paraplegia, quadriplegia, and deafness. I knew that they experienced life differently than I did, and I knew that, given the opportunity for an equal playing field, they lived full lives. Yet, how would I level the playing field for my deafblind child?
Two principles guided my approach to solving that problem. First, thanks to exposure to some of the most creative, exciting, and out-of-the-box thinkers in the field of disability, I realized that I had to believe in my own parenting abilities. Secondly, and wholly through experience, I learned that deafblindness is a unique disability. It's not simply deafness plus blindness; it requires a different skill set to make sense of the world. In fact, some deafblind people and some hearing, sighted professionals in the field have begun to use the term deafblind, without a hyphen. This term indicates that deafblindness is, indeed, a distinct disability.
The first time I held my son Jon I was taken by his big, beautiful, blue eyes. Granted, everything about Jon was big. Born by Cesarean section, he weighed nine pounds, nine ounces and measured twenty-two inches in length. My mother claimed he was the size of a three-month-old at birth. As I held him, I was impressed by the way he seemed to be looking at everything outside the window of my hospital room. I told my husband to bring us lots of toys because this kid was curious!
Jon turned out to be a difficult baby. He wanted to be held almost constantly, and he cried whenever I put him down. By the time he was a few weeks old, I realized that, although his eyes moved back and forth, he didn't focus visually. When he was three months old we learned that there was a name for his "active" eyes. The condition was called pendular searching nystagmus. Jon had no pupillary reflex. He was totally blind. The diagnosis was Leber's congenital amaurosis (LCA), a genetic disorder that affects the retina.
We enrolled Jon in an early-intervention program with infants who had a variety of disabilities. At each weekly meeting, the teachers impressed upon us moms how important we were to the success of our babies. They emphasized that it was our responsibility to work with our children each day at home. I accepted this role willingly and seriously. I set aside time every day to work with Jon on PT, OT, and language goals. Jon also exhibited what the professionals called "autistic-like" behaviors. He flapped his arms, resisted change, laughed at inappropriate times, didn't respond to verbal cues, and preferred to play alone or only with me.
When Jon was fifteen months old we switched him to a brand new early intervention program specifically for babies who were blind or visually impaired. The teachers were bright, enthusiastic, and energetic. They, too, encouraged parents to participate as their children's first teachers. We were several months into this program when the speech therapist expressed concerns about Jon's hearing. Just before his second birthday, we learned that Jon was profoundly deaf.
The diagnosis was not a total surprise since there were people on both sides of our family who had hearing loss, including my husband. Now, suddenly, everything made sense to us. No wonder Jon had been such a clingy, difficult infant! Because he couldn't see or hear, I was his only connection with the world. I tried to imagine how frightened he must have been during those first few months before he came to trust me. I now understood why he didn't know his name, respond to verbal cues, or make sounds that we could interpret as words. With nothing to look at or listen to, perhaps he flapped his hands for something to do.
Because of his incredibly acute sense of touch, we hadn't recognized Jon's hearing loss. When we walked into a room, the vibrations on the floor signaled him to turn to us. When the doctor used a tuning fork, he turned toward the vibrations. When my husband came home at night and opened the kitchen door, Jon quickly turned to face the change in the air flow.
I drove home from the audiologist's office with a heavy heart. All of the blindness skills we were learning weren't enough. Our audiologist had given us a new list of resources, but where should we begin? I wasn't entirely confident in my ability to parent a child who experienced the world so differently from the way I did, but I was determined to be a good mom to my son.
That afternoon I called the John Tracy Clinic in California. The clinic offered a distance learning program for families of deafblind children, and I signed up immediately. When my packet of information arrived, I was hooked. I loved the program's approach to family education. It focused on the importance and contributions of every family member.
Soon after we started the John Tracy program, I discovered a school for the deaf twenty-seven miles from our home. This school, too, offered early intervention services, and we signed up. Jon was now attending a program for the blind and a program for the deaf. He was the only deafblind child in either one, and none of the teachers had any experience working with the deafblind.
A blind baby hears something in the distance and is curious about the sound. A deaf baby sees movement and activity and wants to join in. My baby didn't see or hear. He knew only personal touch, a change in temperature, a breeze, a vibration. Helen Keller is reputed to have said, "Blindness cuts us off from things, but deafness cuts us off from people." Deafblindness is unique because it impairs the natural desire to connect with both people and things. How would I motivate my baby to explore a world that he didn't know existed? He needed a link to the world, and I would be that link. But how would I create meaning for him through touch alone?
The infant brain is very malleable. When the right stimulation occurs at an early age, neuronal connections are made and the capacity for learning improves. Jon's early intervention teachers showed me how to use his senses of touch and smell, as well as his awareness of body position and movement. They also encouraged me to help him use his limited eyesight to learn about the world. By the time he was two, Jon had developed some usable vision. He could see an object if he held it two to three centimeters from his eyes. It was not really functional vision, but it provided another channel through which he could interpret what he was touching. The more meaning he derived from his experiences, the more curious he became.
Jon's orientation and mobility instructor cautioned me about putting him in a playpen. If he had free reign of his environment, he surmised, Jon would be more likely to explore. The more he explored, the more he would gain knowledge of the world.
Our hardwood floors served Jon's mobility needs very well. He would lie on his back and propel himself by pushing with his feet. He slid all over the floor, taking in information from his largest sensory organ, his skin. He explored every inch of every piece of furniture from the floor up to as high as he could reach. Then he started to climb. Any time we put him into his crib, he climbed out. Despite our best efforts to keep the stairs off limits, he frequently climbed up the outside of our open staircase, and would hang from the handrail ten feet above the floor! My stomach jumped into my throat nearly every day with his antics, but I kept focused on my goal of encouraging him to be independent and curious.
Jon started walking at age three and a half, and then his knowledge of the world grew exponentially. He liked to move the furniture around. Within ten minutes he could rearrange my living room completely. When he started walking outside, he discovered that his long white cane provided him with incredibly interesting information. He would measure bushes by the cane's length. He would let the cane roll down the neighbor's driveway. He dropped it down sewers and off bridges as he tried to touch the bottom.
When Jon was five, his favorite toy was a refrigerator box that he had made into a fort. It was complete with artwork drawn on the walls with smelly markers, and it was lighted by flashlights placed in holes he had cut in the walls.
Our strategy for encouraging Jon's curious exploration was working. Jon was becoming both clever and creative. Yet another challenge remained. How would we bring language to his experiences?
I started learning sign language as soon as the first information packet arrived from the John Tracy Clinic. I taught Jon everything I learned. In addition, we were both learning to sign at the school for the deaf. After a year, however, I realized that to become fluent we needed a Deaf teacher. The term Deaf, with a capital D, refers to someone who uses American Sign Language and considers himself or herself part of the Deaf community; it is a cultural identification based on a shared language, ASL. I enlisted the assistance of a Deaf family in our town. We met weekly, and they became our lifeline to the Deaf community. It took me about five years to become fairly fluent in sign language.
At about this time, it became apparent that Jon could not read print without fatigue. I began a quest for Braille instruction. I knew that I faced a huge challenge. At that time there were no laws about considering Braille for a partially sighted child. Nonetheless, I was certain that Braille provided the only hope for my son to attain literacy. Unfortunately, our state agency for the blind didn't agree. Upon my insistence, we decided to get an impartial evaluation. Six individuals--three blind and three sighted--would evaluate Jon and offer their opinions. We agreed to go along with the consensus. The six evaluators unanimously agreed that Jon should learn Braille.
Our next challenge was to make the classroom instruction at the school for the deaf accessible. Jon had always used tactile sign language. He took in signs by placing his hands on top of mine or by touching the shape of my hands. If he wasn't in a one-on-one situation with his teacher, he had no idea what was going on in the classroom. Our school district, which was always supportive, provided a one-on-one interpreter and/or teacher of the deaf. These professionals provided tactile sign language for Jon until his high school graduation.
Some of the other tools that leveled the playing field for Jon were technology and deafblind-specific orientation and mobility. He benefited from accessible classroom materials including large print, colors, tactile graphics, and Braille. We also trained some of his classmates to be support service providers (SSPs). SSPs act as the eyes and ears for a deafblind person. Jon had peer support service providers instead of adult paraprofessionals for in-school activities.
Jon graduated from high school in 2008. He was a member of the National Honor Society. For his work in the fine arts, he received the 2007 VSA Arts of New Jersey Arts Excellence Award in fine art as well as a New Jersey Governor's Award in Art Education.
Jon enjoys all kinds of sports, including golf, martial arts, boxing, hiking, and rock climbing. He is the only deafblind belayer in New Jersey.
As for communication, Jon uses whatever works. In some situations it is tactile sign language. In others it is Braille or a notebook and marker. He uses AIM and email to keep in touch with friends, and he surfs the Web with the assistance of screen enlargement software and a Braille display. He uses a videophone to call me and we communicate through a webcam-like device in sign language. He uses the videophone along with the relay system to order a pizza or call a friend who is hearing. He uses a long white cane and travels independently on paratransit. Right now Jon is taking classes at a community college while he completes a vocational training program for the deafblind at the Helen Keller National Center.
I'm not going to tell you that blazing this trail has been easy. In fact, it's been the biggest--and most rewarding--challenge of my life. I've always believed that with the appropriate skills and accommodations--a leveled playing field--Jon would live a full life as an active member of his community. I've never given up on this quest. I'm grateful every day for all that he and I have learned from each other.
I encourage you to believe in yourself as your child's first--and best--teacher. If you don't take the lead, who will? Today it's much easier to access resources, connect with others in a similar situation, and search for innovative solutions than it was twenty-one years ago. A host of resources empower you in opening the gateway of opportunity for your child. Never give up on your dreams or expectations, and I promise you that this journey will reward you in ways that you've never imagined.
by Barbara Hammel
From the Editor: In his thought-provoking 1993 speech "The Nature of Independence," NFB President Emeritus Dr. Kenneth Jernigan suggested that independence for blind people is not strictly defined by the use of Braille and the long white cane. In this article Barbara Hammel ponders the nature of independence for her twin sons who are blind and on the autism spectrum. Barbara is a longtime Federationist and serves as secretary of the Iowa Parents of Blind Children.
In 2005 my husband, David, and I started on a journey that changed our lives forever. On June sixth, the morning of our seventh anniversary, we entered the adoption center in Kunming, Yunnan, China and met our almost three-year-old twin boys. Ji Ming and Ji Kun sat so still that I, as a totally blind person, didn't quite believe they were there. I don't know what the woman from the orphanage finally said to them, but suddenly Ji Ming became our Paul. He came right to me and wanted me to pick him up. When David picked up Ji Kun, he became our Jesse as he let out a squawk of displeasure. "He's the crabby one," they told us, and for the next three years they were right.
When we first learned about the twins, we knew that they both were blind. I looked forward to teaching them to become capable, confident blind men some day. I couldn't wait to introduce them to the world of books through Braille and the world itself through the tip of a cane. David dreamed of chess champions and half of a barbershop quartet.
By our second day together Paul recognized his name. After six months we knew that both boys understood what we said to them. Nevertheless, they did not begin to speak. Even after tubes were inserted in their ears to correct mild hearing losses, their language output was minimal.
Two months before the twins' fourth birthday we received a stunning diagnosis. We learned that both of our sons were on the autism spectrum with developmental delays and disruptive behaviors. So began a journey down a road far different from any we had expected.
Each person with autism has a unique set of strengths and difficulties, and you cannot use a cookie cutter approach. That's why autism is called a spectrum disorder. People on the autistic spectrum may have atypical development in such areas as eating, sleeping, and communication. Our boys are challenged in each of these areas.
There are many theories about why autism occurs and many helpful treatment strategies are available. The first thing David and I discovered is the importance of good sleep. We tried melatonin to help the boys get into a regular sleep pattern, but it did not work for them. From melatonin we moved on to Clonidine, a blood pressure drug that sometimes helps children with sleep problems. For Jesse it seems to be useful, but in Paul it triggered problem behavior. Our counselor then suggested an herbal compound, valerian root. Paul's behaviors haven't decreased but the anger behind them seems to be less intense. Light therapy may also be helpful, and there are many other options for us to explore. These are just the stops we have made so far on our journey.
Eating has been a major issue for the boys. We know that nutrition is important, but when little lips and tongues don't want to touch fruits and vegetables you feed whatever you can. Paul has always been a good eater, but a picky one. Some of his behavior problems may be due to the fact that he is a noodle-hound. We've learned that carbohydrate obsession can be a sign of a mineral and/or vitamin deficiency. If that deficiency can be corrected, we may see improvement.
Jesse has presented us with many feeding challenges. To this day he does not feed himself independently. We still have to load his utensil, and this is a grand improvement for the little boy who ate almost nothing when he first came home to us. Jesse would eat apple at the beginning, so we knew he had the proper skills for chewing and swallowing. His preschool added pears to his diet. We thought he would soon learn to like more and more new foods.
After a month of preschool, however, Jesse quit eating solid food of any kind. We still have no idea why he stopped eating. For a year he lived on PediaSure, a food-replacement drink used by children who have feeding tubes.
Two months after Jesse stopped eating we consulted a feeding specialist who started us on a program to reintroduce solid foods. First we had to get a spoon into Jesse's mouth. We dipped the tip of the spoon in baby applesauce and touched it to his lips. When he finally tolerated that, we started to push the spoon in farther, still with just a little bit of food. For a long time he took only one "bite" per meal. When he could accept the spoon more comfortably we increased the number of "bites." Seven months into this program we discovered that Jesse likes crunchy foods. Funions and pretzels became his rewards for taking spoonfuls of applesauce and other foods. By the time we went to the 2007 NFB convention in Atlanta, Jesse was eating one to two jars of baby food per meal, but still drinking PediaSure from a baby bottle.
Two years to the day after Paul gave up the bottle, Jesse took the same major step. Coming home from Atlanta, he tried drinking soda from a straw--and hated it. We found that drinking straws didn't work for him, as he tended to bite down when he sucked. Instead we used a sturdy straw cup. By the end of that year he'd moved up to pureed food. Grandma stopped pureeing when she took care of the boys during the Dallas convention of '08, and he hasn't looked back. He eats few noodles but he loves rice and meat. (And did I mention he loves meat?) Steak, Smokies, ham, hamburger, chicken--the boy who once abhorred solid foods now relishes them all!
Since it's still virtually impossible to get the boys to eat fiber, the problem of constipation looms large. We combat it with a stool softener called Miralax. Miralax is a kind of powder that we put in their food or cups of water. It smells like glue, but the boys don't seem to mind.
Paul, the more extroverted of the twins, has acquired some limited language. He cannot seem to say most of what he wants to tell us, however, and becomes easily frustrated. Unfortunately, right now his main mode of communication is a set of disruptive and hurtful behaviors frustrating to everyone around him. The school continues to push for more speech. We, his parents, would like to explore the use of an augmented communication device that could help Paul express himself more freely.
Jesse, the more introverted twin, seems to have little ability or desire to communicate verbally. He has learned signs for "drink," "more," and "all done," and he can shake his head "yes" or "no." Recently he has started taking one of us by the hand to lead us to what he wants. This is a huge step for the little boy who scarcely responded to any stimuli when we adopted him five years ago!
Autistic people who are sighted are generally thought to be visual learners. Most of the teaching methods used with autistic children are based on visual pictures. Sighted experts seem to be stumped when they have to find alternative communication tools for kids who combine autism with blindness. The Texas School for the Blind and Visually Impaired (TSBVI) has a good starter selection of tactile symbols that we have used for schedules. Paul can now remember a whole day's worth of activities.
He learns new symbols quickly, after being exposed to them only two or three times. He is rapidly advancing beyond the symbols we have available. If he were a sighted child, his book of pictures would be far more extensive and would greatly enhance his communication options. There is a tremendous need for nonvisual materials to meet the needs of blind children on the autism spectrum.
In the Federation there is a constant emphasis on independence. Before I met Paul and Jesse, I believed that independence meant Braille literacy and travel with the long white cane or dog guide. The twins have given me a new perspective. Perhaps Braille will always be a mystifying jumble of bumps on paper for them. Maybe for them the cane will never be more than an extension of the arm, a means to reach out and hit people. We face the possibility that our children may not become independent in the ways we once envisioned. We will never stop trying to teach them, but our understanding of independence has begun to take a new shape. For some people, independence may be the ability to dress and feed themselves. It may mean the ability to convey one's basic needs to others, whether through speech, signs, or a communication device.
Paul's progress has been slow but steady. Today he knows the words to more than a hundred songs. And a few months ago, after he asked for a ride in the van so many times I lost count, he turned to me and said in my own exasperated tone, "I said no!" And Jesse? That little boy who wouldn't eat or walk, who cried all the time and hated to be touched, the little boy who was only happy in a cardboard box? He is blossoming, not in slow, steady steps like his brother, but in leaps that startle and amaze us.
I know we are not alone on this journey we've begun. Many other parents are learning to dream different dreams for their children with multiple disabilities. We travel a different road and the milestones may seem small to the rest of the world, but they are giant steps for us.
by Marie Smith
From the Editor: Any child who is visibly different will probably be teased, ignored, or even bullied by peers at one time or another. In her blog Marie Smith of Alabama described how she reacted when her son was bullied due to his atypical appearance. Her blog post expanded into an article for Future Reflections on this important and often painful topic. You can visit Marie Smith's blog at <http://allaccesspasstojack.blogspot.com>.
This is Jack. He is four years old. To me, he is the most awesome, brave, hardworking, self-motivated person who has ever lived. But if you walked by Jack in the grocery store, you'd probably take a second glance--and not for the reasons I've just mentioned.
The night Jack was born I distinctly remember hearing the words "Apert syndrome" for the first time. Apert syndrome is a rare craniofacial disorder. It causes a number of issues that vary from one affected person to another. At least three characteristics are seen in every person with Apert syndrome. The first is early fusion of the sutures in the head. The sutures are supposed to be open at birth to allow room for the brain to grow. Another characteristic is called retruded midface; the middle part of the face grows at only one-third the rate of the rest of the face. The third trait is fusion of the fingers and toes.
Children with Apert syndrome require a series of surgeries. Cranial surgery is necessary to make room for the child's growing brain. Eventually most children with Apert syndrome also need surgery to correct breathing issues by pulling the middle part of the face forward. (Jack hasn't had this surgery yet, but he has severe obstructive sleep apnea and requires a device to help him breathe at night.) Still more surgeries are needed to separate the fingers and toes of children with Apert.
Jack has not followed a typical Apert's pattern. In a two-year period he needed thirteen operations, most of them to reduce or prevent pressure on his brain. Somewhere along the way he also developed optic nerve atrophy. He is legally blind in his right eye and has only light perception in the left eye.
At nearly five years old, Jack is in the beginning stages of acquiring speech. He also has fine and gross motor delays. He is socially delayed and does not read nonverbal cues well, probably because he doesn't see them. Nearly constantly he has a runny nose due to very small nasal passages and what his allergist calls "vasomotor rhinitis"--his nasal passages overreact to irritants.
As I said earlier, if you saw Jack in a grocery store, you would probably take a second glance. If you had children with you, they might point and say, "Mommy, that kid has a big head!" or "Daddy, look at his weird eyes!" Young children tend to let their thoughts spill out without any filter, using whatever words they know. I'm sure that one of these days it will be Jack's turn to embarrass me with some ill-placed remark, uttered innocently and entirely too loudly. He will be speaking his mind with whatever vocabulary he has.
My husband, David, and I do not attempt to shelter Jack from children's honest observations. We would rather that parents not try to hush their children and hurry them out of Jack's presence. We know that he has a big head and his left eye protrudes a bit. His fingers and toes look unusual, too. We think Jack is aware that he looks a bit different from other children, but we want him to know that he is still essentially the same.
We realize children are bound to make honest observations. We would like parents to acknowledge their comments calmly and say, "Yes, that boy looks a bit different, but he is a little boy who might like to play. How about we go say hi?" Someday when Jack is on the playground and a kid says, "You sure do have a big head," I hope he'll say, "Yep, so do you want to play ball?"
What's really important to us is that parents and children not avoid us. We're just regular folks. Everyone has differences. Jack's differences are more readily apparent than some, and that's okay.
We want children to treat Jack the way they would treat any other child. Like any other child, he responds according to his mood. If he's in a good mood when a child approaches him, he'll flash a beautiful smile. Now and then he won't seem to care that anyone is there. Sometimes he wants to play, and sometimes he prefers to be by himself.
To answer the questions children ask about Jack, we explain that he was a bit different when he was born. He did not have separate fingers or toes, but we got the doctor to separate them for him. Also, he had some problems with his head that made it grow big, but the doctor took care of those problems, too. Jack does not see very well, so he often uses his hands to touch people and things. He is still learning to talk.
It's a lot of information for a child to take in, so we always finish with the fact that Jack is a little boy who likes to run and play as much as they do. Often children only remember the last part of anything you tell them, and that's the most important part. Kids will notice Jack's differences on their own. They may need adults to help them see that he is like them. He very much is, and he loves to be around other kids.
A few months ago we spent several days surrounded by lots of people we didn't know. At times like that we encounter a great deal of curiosity from others. We met the full spectrum of reactions.
Some kids did not seem to register Jack's obvious differences. They played happily beside him and with him. Some kids asked a couple of questions and then resumed playing with Jack. A few kids refused to go anywhere near Jack, even after I tried to introduce them to each other.
Heartbreakingly, there were some kids who (there's just no other way to say this!) were mean and hateful. I tried to introduce Jack to them, but they would not listen to me. They called Jack a monster and told other kids to run away from him.
It was a shock to my system. I'm not going to lie; it hurt. It hurt real bad. The worst part was seeing how the mean kids influenced the others. I did not dare to react for fear that the pain inside me would burst out and injure those little people.
I wish I could believe this was an isolated incident. Sadly, I know there will be more to come in the months and years ahead. All kids get picked on for something from time to time, and Jack's unusual appearance will doubtless attract the attention of young bullies. If I'm around when it happens again, I will remind the child that he is being mean--if you call someone a monster, you know you are being mean!--and ask him to stop. Again I will try to introduce Jack. If that does not work, I will ask the bully to take me to his parent to discuss his behavior.
I wanted to believe that Jack did not hear what the kids were saying, but I'm sure he did. He asked to leave, although he'd been having fun. He started clinging to me. After that episode, we had a brief talk with him about how some people are mean. We tried to explain that meanness is a reflection on that person and what they are going through, not a reflection on Jack.
Why do some children play comfortably with Jack and why are some kids mean? What makes the difference? Is there inherent goodness in children, or do we need to be suspect of every second glance Jack receives?
After a lot of prayer, thought, and discussion with my other half, I believe parents make the difference. If parents are uncomfortable with Jack and are busy processing their own thoughts about him, they cannot help their children feel at ease. They will not encourage their children to play with him if they cannot get past his differences themselves.
Some people live their entire lives surrounded by people who look and act more or less like they do. When they encounter someone who speaks a different language, has a different culture, uses adaptive equipment, or has a craniofacial disorder, they absolutely don't know how to react. Sadly, lack of knowledge sometimes results in fear.
What can we do? How can we show these people that different is neither bad nor scary?
One thing we can do is to get out into the world. I truly believe that it helps for people to see Jack being the adorable little kid that he is.
To keep friends and family updated without overloading their email servers, I started a blog. I find it easy to write about how I think and feel. Fortunately, other people have found our life interesting, and we've spread a bit of awareness through my posts.
When we're out in public, I find I can connect with most kids, and these exchanges help me connect with the parents. However, that's not always a winning formula. In the live presence of other adults I tend to be rather shy. Out in the big wide world I have to take a deep breath, step up, and introduce myself and Jack a little more often. "Hi," I'll say when I meet you. "I'm Marie, and this is Jack."
by Michelle Hess
From the Editor: In 2009 the NFB of Illinois came to know Rachel Hess when she took part in FreedomLink, a transitions club for blind teens. In this article Rachel's mother, Michelle Hess, shares her experience as the parent of a blind child with many additional disabilities.
"What do I possibly have to say?" I asked myself when I was invited to write an article about being the parent of a blind child with multiple disabilities. As a busy mom, I hadn't put my ideas down on paper in years. But as I thought about it, I realized that writing about my experience was a project long overdue.
Our daughter, Rachel, is blind and has many other physical and mental challenges due to a rare genetic disorder called Hurlers syndrome. As I think of all the difficulties we have faced over the years, one of the most aggravating challenges for me is the dreaded medical office form. If your child has multiple medical issues, I'm sure the scenario is familiar to you--you're in a new physician's office and an innocent young receptionist hands you a five-page NEW PATIENT MEDICAL FORM. You want to scream, "You have got to be kidding! Do you know how many of these I have filled out over the years?" Instead you smile back, take the form, and prepare to unload a lifetime of grief onto the paper.
For the parents of relatively healthy children, the medical form is quick and routine, but the rest of us have a lot of explaining to do. I have to list Rachel's underlying diagnosis, the problems that accompany the underlying diagnosis, and all the stuff that may have occurred as a result of surgeries that didn't go as planned. Then there are the medical problems that don't really fit the underlying diagnosis but "just happen to some kids sometimes," as one doctor put it. Finally comes the "OTHER" box. Within this tiny space--all of one miniscule line--I am asked to pile years of my daughter's life. Usually I have just enough room to write, "See attached." I hand in a packet of medical information that feels as though it weighs thirty pounds. If you're a parent in the "OTHER" Box Club, you probably have a knowing smile on your face right now.
Though Rachel is nineteen, she still sees a pediatrician. Recently his office started a care coordination program for children who have a chronic condition lasting more than one year. I filled out the forms for this program and received a neatly printed summary of the information I had sent them. It listed eighteen diagnosis codes for my daughter. Eighteen! The sheet sent my husband and me reeling. Of course legal blindness was one of her diagnoses, but there were seventeen more! So when I asked myself if I am qualified to write about being the parent of a blind child with additional disabilities, obviously the answer is, "Yes!"
Years ago I attended a support group for parents of visually impaired children. At first I felt a sense of oneness with everyone in the room. When people started to talk, however, I realized that in some ways our experiences were very different. One mom said that her child was using a screen-reader. When I asked her how he was learning to use it she replied, "I have no idea. He just tools around and figures it out by himself." I felt a heaviness in the pit of my stomach. My daughter cannot learn complicated processes on her own. She needs the information delivered to her in small, manageable pieces. Also she needs constant reinforcement to help her retain and recall the information she has learned. When she learns a new skill she can lose it again if she doesn't practice consistently at school and at home.
Most kids, blind or sighted, do a lot of inferential learning. They generalize from one experience to another and build a strong concept of cause and effect. Rachel is a very concrete learner. She has a hampered ability to reason and predict, complicated by problems with her short-term memory. When we read together I stop often to talk about what we are reading. She is an excellent decoder when she reads Braille, but unless we stop and talk she has very little comprehension of the passage she has read. Nevertheless, she is a hard worker and very determined to learn. If something is difficult, she keeps trying until she masters it. Teaching her is a joy.
As I have said, Rachel's disorder regularly sends us to physicians' offices. We monitor her eyes, ears, heart, VP shunt, spine, and neurological status on a yearly basis, and her endocrine and dental issues more frequently. Recently we made several trips out of state to see the orthopedic surgeon who focuses on the hips and knees of Hurlers patients. To overcome the boredom of long waits we do a lot of reading and singing. Yesterday Rachel gave a mini-concert to the folks in our orthodontist's waiting room. I tried to quiet her, but people noticed how pretty her voice is and insisted that she continue. Rachel, you go, girl!
Rachel has endured three umbilical hernia repairs, a tonsillectomy, a VP shunt placement, a bone marrow transplant, bilateral carpal tunnel surgery, two spinal fusions, four hip surgeries, and more. Twice she has been in a hip spica cast. Last year she underwent surgery to put her hips and knees in better alignment and to help make her legs more equal in length. I remember being in the PACU (Post Anesthesia Care Unit, for those lucky enough not to know) after the operation. My husband and I were standing over Rachel's hospital bed and holding her hands. For some reason we asked the nurse, "How many surgeries does this one make?" She looked at Rachel's folder and responded, "Seventeen."
We have both been present and lucid for each of Rachel's surgeries, but when my husband heard that number it hit him hard. I saw the tears well in his eyes. Suddenly he looked sick and excused himself from the PACU. I knew he was going somewhere to scream or be sick.
Each of Rachel's surgeries has been a setback for her and for our family. All too often she builds new skills, only to lose them as she spends weeks or months recovering from yet another operation. We are constantly adjusting and readjusting. For example, we spend a lot of effort stressing independence skills. Then suddenly safety trumps all else, and we hear ourselves warning our child not to take one step out of the shower without our presence or so help us! Many of you know exactly what I am talking about.
People sometimes ask us, "How does your family handle all of this? I don't think I could do it." Of course having the love and understanding of relatives is priceless. Our church community has also been supportive. Our network is huge. Countless school teachers, home-bound instructors, school therapists, private therapists, teachers of the visually impaired, orientation and mobility teachers, activities of daily-living skills instructors, a wonderfully patient piano teacher, in-house caregivers, and dedicated physicians have been invaluable to us. All of these friends, relatives, and professionals belong to our "Angel Hall of Fame." Connecting with people who have similar experiences is critical. Lots of our friends have kids with special needs. Talking to any parent of a child with disabilities is great. Occasionally I turn to the "big guns" and get on the phone with another Hurlers mom somewhere across the country. It is refreshing to talk nonstop with another mom for four hours! Without apologies we go back and forth about our kids and what is happening medically. It really helps to talk to someone who is walking the walk with you.
Hard as Rachel's medical ordeal is for me and my husband, she is the one going through the worst of it. We take her lead. She handles it all. If she can endure whatever is happening at any given moment, who are we to come undone? She is the emotional glue holding our family together.
Thanks to her O&M training at school, Rachel likes to explore the world, long white cane in hand. She loves shopping malls, touching and smelling everything in them. Hot cocoa at Starbucks is one of her favorite treats. She loves to visit museums and go to concerts in downtown Chicago and in the suburbs. She enjoys theater productions of any kind.
Rachel is involved in a rich variety of activities in our community. Currently she is taking an acting class through an organization called Flourish in the Footlights. Flourish is dedicated to the development of all individuals. Rachel's class is taught by a team of special-needs professionals and professionals in the performing arts. This year the program will culminate in an onstage production of Snow White.
Rachel is also active in church. The pastor encourages all the youth members to express themselves artistically in the venue of their choice. Rachel has participated in skits and played piano during the worship service. She is also involved with NWSRA, Northwest Special Recreational Association. She has taken piano lessons there and for years has performed in the annual showcase.
Recently we found a tandem tricycle that works very well for Rachel. Called the Adventurer Tandem, it is made by Freedom Concepts. Singing, with the wind in her hair, Rachel can be seen cruising down the streets of our suburban community of Arlington Heights. As she wheels by, people smile and shout, "Cool bike!" Fortunately we have a trailer that can haul this large tandem to the bike trails in our local forest preserve. We also have taken it up to Door County in Wisconsin, where we cycle together as a family on the winding trails of Peninsula State Park. Rachel loves to go on vacations. For our next family getaway we plan to visit St. Louis, where we will check out that famous arch and sample the area's fine dining.
Before she goes to bed at night I often tell Rachel, "You are the coolest person I know. If I ever end up shipwrecked on a desert island with someone, I want that someone to be you." Rachel's upbeat attitude inspires everyone in our family. She cares about others. If you are sick she asks you how you are doing. She may have difficulty remembering things, but she holds onto what's important.
That "OTHER" box is tiny, and there is so much we have to cram into it! The box doesn't give us room to write about all the things we are thankful for. Did I forget to mention that Rachel's last surgery managed a miracle? It removed one of her diagnosis codes! Yes, 755.3, "lower limb length disparity," has completely vanished from the paper.
Some day I'd like to host a big party for all the parents in the "OTHER" Box Club. We can all get together and celebrate our personal joys. Let's build a bonfire with our truckloads of paperwork. We'll dance around the flames and hug our kids, and scream a little, and sing. Let's do plenty of singing!
by Andi Borum
From the Editor: Andi Borum is president of the Virginia Parents of Blind Children and is the mother of two daughters who are deafblind and have additional disabilities. This article is based on a talk she gave at the conference for parents of blind children from birth to age seven, "Beginnings and Blueprints," held in May 2009 at the Jernigan Institute in Baltimore.
I'm Andi Borum. I'm the mother of two beautiful daughters. They are deafblind with additional disabilities. My oldest daughter, Chelsea, was born in 1994, and my younger one, Olivia, was born in 1998. In the fifteen years since I have officially entered the world of parenting children with special needs, both of my children have received all the therapies that you can imagine, mostly through the public school system. In addition, they have been through many, many, many surgeries, about forty-two operations between them, and they have undergone more tests than I can count. My kids are usually very happy, and they function quite well, given their special needs.
In the beginning of my journey as the parent of children with significant challenges, I asked myself several questions. Where do I begin? What do I need to understand about all of this? And when will this overwhelming feeling ever go away? To answer the question Where do I begin? I found there was really nothing for me to decide. Ready or not, my journey had started. I was a first-time mom with a four-pound infant who had to receive a tracheotomy. It was on right from the start, and it was definitely twenty-four/seven.
Any parent with an infant can feel overwhelmed at times. You get unbelievably tired. You hope that a pattern for eating and sleeping develops so that at least you can get into a routine. In my case, Chelsea required constant attention. I couldn't predict when I would have to suction her. It could be any place, at any time. Unfortunately, she came home from the hospital without the support that she needed. She actually required a nurse to care for her, and I needed lots of training and respite right from the beginning. I was very sleep deprived!
This situation went on for about six months. Finally, at a doctor's appointment (she had thirteen specialists at the time!) the pediatrician stated that she was going to admit Chelsea to the hospital. Incredibly, she had only been admitted once before then, after the initial neonatal intensive care unit (NICU) experience. Generally, children with tracheotomies are admitted once or twice a month. The doctor could have given her an antibiotic and sent us home, but she decided that an admission would take care of the infection and give her a chance to work with the discharge planner. She wanted to make sure that we left the hospital this time with the proper support, which was nursing care.
What did I need to understand? I needed to understand as much as I could about the diagnosis of CHARGE syndrome and the issues it would present for my child and our family. I learned that CHARGE is a rare genetic condition that affects vision and hearing as well as the heart, kidneys, and many other organs.
Identifying a child's disability and getting a diagnosis can be a gradual process that occurs over many months or even years. Chelsea received the diagnosis when she was one week old, so we were very fortunate. However, CHARGE is such a rare syndrome that nobody but the geneticist knew anything about it. The doctors and nurses had never heard of it before. It was important for me to acknowledge that Chelsea had CHARGE and to educate others about the syndrome. It was equally important for me to focus on Chelsea's development, her strengths and abilities. I learned to take life one day at a time, and to take each day with a positive attitude.
One morning during the shift change for the nurses at the NICU, the parents were required to leave the unit. I remember sitting in the waiting area with four or five other parents. We sat in total silence. The mother who happened to be next to me started to cry. I asked her what was going on with her child. She responded that he was three days old and needed heart surgery. I replied that we were fortunate to have a children's hospital and that it was the best place for us to be. There were talented doctors who could perform extraordinary surgeries on infants. It was nice to open up conversation with her that day. By saying something positive to someone else, I momentarily found peace about my own situation.
To answer the question When will this overwhelming feeling go away?--in my case it never has. Most of you have heard the saying "My plate is full." I can safely say, "My platter is full!"
Beginning the Journey
For some of us, family and friends are a great source of support, asking what they could do and offering help and understanding. For others, friends may drift away and even some family members may become distant. It can be hard for those around us to understand the range and depth of emotions that we experience. Please remember that you are not alone! Within your extended network of family and friends you will soon discover who is able to support you during the stressful times. Keep in mind that it may not be easy for family and friends to understand your situation. They can be so overwhelmed that they don't know what to do or say. It's not always easy to admit to yourself and others that you need help. Try to be specific about the things that others could do to help you. Do not be afraid to let those close to you know how you feel. Opening communication with family and friends can sometimes help relationships grow closer. Having a child with a disability can also open the door to new friendships and support networks.
As you begin your journey, I suggest that you journal the highlights of each day. Sometimes it's helpful to write down what you're thinking and some of the emotions involved. I also urge you to create a filing system. It was truly amazing how many piles of papers I accumulated, and how fast those piles grew. I didn't develop a system until several years had gone by, and by then my paperwork was a mess! When I started filing, I filed by specialty. I started a folder for the eye doctor, another one for the hearing specialist, another one for the orthopedic team, one for the dental team, and so on. If I changed doctors along the way, I didn't have to start a new file. All of the previous records for that specialty were easy to locate.
Don't be afraid to ask questions. Often professionals use terms that we don't understand, so we need to ask for clarification. As parents we have to make a lot of decisions regarding our children. We need to be sure we have accurate, up-to-date information in order to make those choices.
It is also valuable to find positive role models, parents and professionals who can share their knowledge and experience. I finally found the National Federation of the Blind in 2005. I was struggling to understand my daughters' vision issues. We went to four different eye doctors, and they each gave us different reports. Each doctor listed a different set of eye conditions. Looking for answers, I attended my first NFB chapter meeting. Who better to answer my questions about vision loss? I was blessed that our state president, Dr. Fred Schroeder, happened to be at that meeting. He was curious about the educational opportunities my children were receiving. Sadly, neither of my girls was receiving appropriate services. Neither of them was getting Braille instruction. Braille had never been discussed at an IEP for either of my children.
After attending several chapter meetings, I was able to go to the Virginia state convention. At the meeting of the parents' division I was nominated as its vice president and happily accepted that position. After a short time I moved to the position of president of the Virginia Parents of Blind Children. In 2006 I was asked to participate in the National Federation of the Blind Parent Leadership Program. I attended my first national convention in Dallas that year.
Since my involvement with the National Federation of the Blind, I have participated in the planning of several seminars for parents. The first seminar that I planned focused on orientation and mobility. We had a wonderful keynote address by Joe Cutter, who pioneered teaching the use of the long white cane to young blind children. I experienced my first cane walk during that seminar. I was guided by Seville Allen, and my cane was way over my head! I don't think either of us realized that that was not the right height for my cane!
At another seminar we concentrated on Braille and literacy. Again we had a wonderful keynote speaker, Dr. Ruby Ryles, who has done groundbreaking research on the value of Braille to blind children and adults.
As parents of children with disabilities, we share a common bond. By sharing information and supporting each other, we help our own families and others as well. We might use different words to describe our situations, but what brings us together is a shared belief in our strength as parents.
With all the challenges that come with having a child with a disability, it can sometimes be hard to maintain a positive outlook. Celebrate your achievements and appreciate your child's successes, small and large. You and your family can still experience plenty of joy and happiness.
I want to make sure that every parent takes away this message if nothing else: Be kind to yourself! Do not focus continually on what needs to be done, but remember to look at what you have accomplished. Looking after yourself can mean many different things. With all the other demands and responsibilities in life, parents tend to put themselves at the bottom of the list. Among all of the hospital visits, specialist's appointments, and therapy sessions, you also need to make sure that you do not forget your own needs. It could mean finding time to be with friends or with your partner, spending quality time with your other children, enjoying a hobby, or doing some voluntary or paid work. You are worth it! Looking after yourself may sometimes seem like an impossible task. Taking regular time out for yourself is good for your health and well-being. When you look after yourself you will be better able to look after your child and your family.
As parents we all need support. There are three ingredients for a strong support network. One is information. You need to have information, you need to know how to access information, and you need to be sure you're getting good information. You also need support, like meeting other parents, sharing knowledge and experiences. Finally, there's advocacy. I think it's important to belong to groups that can help you advocate for improvements to the entire service system.
If you have a child with disabilities, you will get involved in the special-education maze. The service system is very complex and confusing. It can take a lot of time for you to find your way through the maze to the information you need. Often the best results are achieved when you seek information from a range of resources rather than relying on one professional or one service provider. It takes time to explore all the options, but the effort is worthwhile. At first, I was overwhelmed by all the information. Gradually I learned to sift through it and work out what was relevant for us and what was not.
As far as parent support, I think it's very important to talk to someone who has a parent's perspective. Every child is unique, and every family is different. You might have all the right information, but you still may need help to understand what it means for you and for your family. This reminds me of what happened when I was expecting my second child, Olivia. Having had one child with significant challenges and being the age that I was, mine was considered a high-risk pregnancy. I had lots and lots of ultrasounds. I was constantly told during those procedures, each and every one of them, the various problems that my daughter was going to have. Her brain and kidneys weren't developing normally. Her hands were deviated outward. They convinced me that my child was going to have Trisomy 13. I'm not very familiar with that condition, but I was told it was going to be fatal. I had a hard time believing that. My first child wasn't very active when I was carrying her, but my second child was. They kept telling me that the pregnancy wasn't going to turn out well, and I kept pressing through.
Being an effective advocate is one way to work toward getting the best for your child. It isn't easy. Sometimes emotions take over, and advocacy can also be very exhausting. But with persistence and the right support, parent advocacy can help you get what you need and what your family needs.
The range of services that are available should be flexible and adaptable to your particular circumstances. It is reasonable to expect that service providers will work with you to identify and deliver the support that is most important to you. Sometimes you have to be creative when working with service providers to put together a package of services. There can also be long waiting lists for some services. It's better to know about a service and to explore options for accessing it in the future than not to know that it's there at all.
There are many professionals and service providers whose job it is to help you. They will be able to draw on their own skills and experience, but it is impossible for them to know everything. It is important for you to trust your instincts. As a parent you have to explain what you believe is right for your child. It is important for parents to encourage good working partnerships with the professionals. (I don't know that I've always done that so well, but I've certainly tried!) We need to respect their role and listen to their points of view. Sometimes situations arise that require us to challenge the professional. This is not always easy to do, and some professionals do not react kindly to being challenged! But if you feel uncomfortable about the advice that's being given by a professional, you should trust your instincts and seek further information. You may even decide to get a second opinion.
You will soon discover that you need to become very good at standing up for yourself and for your child. You need to make sure that your voice is heard and understood by the people who are making decisions that affect you and your family. I've learned that for my family to get what we need I have to speak up and ask questions. Otherwise we don't seem to get anywhere.
I've made up my own acronym from the word ADVOCACY. For the letter A, I say Accept your child. Your child has special needs, but they are not the sum total of who he/she is. Your child has abilities, personality, and a million and one other characteristics that make him or her a unique person. Beyond the disabilities our kids are still regular children.
D is for Determination. As a parent you will need to arrive at lots of decisions. You must pace yourself and never give up. Be determined to gain knowledge about the issues, and keep learning.
V: Voice your concerns. Become the kind of parent who asks questions and advocates for her/his child. Consult with the professionals, but don't give up your parenting responsibilities. Respect your unique knowledge of your child. You are an expert in your own right, and you will seek to apply that expertise to your child's life. A good advocate can get communication flowing. Please do not be afraid to speak up!
O is for Open-mindedness. Once you have made your points, it's time to listen. You've said what you think, and now you get to hear the responses of the professionals. Don't be too quick to object to those responses, even if your initial reaction is negative. Collaborating with the team is more likely to lead to a solution than arguing about whose perspective is right. Listening is hard! Take notes on what you hear. Try to restate and summarize the main points you are hearing, not only the points that you yourself are presenting.
C stands for Calm, cool, and collected. Face it--problems are going to arise. It is important to be prepared ahead of time. Stay calm, cool, and collected. When you go into a meeting such as an IEP conference, it's a good idea to take along another advocate. Another person can help you remember the main points of the meeting and can keep you grounded if you start to get upset.
A: Ability, attitude, above-board. Don't let anyone tell you that your child's ability is limited. It is your job as a parent to envision what could be possible for your child. Focus on maintaining a positive attitude, and stay above-board.
C: Caboodle, cahoots, and calculated. Out of the whole kit and caboodle, pick your battles. Find a partner you can be in cahoots with. This person can align his/her belief with yours, and together you can make calculated decisions affecting your child's education.
Y: Yourself. Take time for yourself! Pamper yourself! If you don't take care of you, you will not be able to take care of your children. Be patient with yourself. This is not a sprint, it's a marathon. When you're in overload you shut down and no one benefits from your efforts.
Advocacy is about problem-solving, envisioning choices, and taking action to make life better for your child and for others. Thank you. [Applause.]
by Stephanie Kieszak-Holloway
From the Editor: What, if any, is the relationship between blindness and developmental delays in young children? Why are so many blind children diagnosed with autism or said to have "autistic-like" symptoms? Stephanie Kieszak-Holloway, president of the Georgia Parents of Blind Children and a frequent contributor to Future Reflections, ponders these questions and more in the article that follows.
"Correlation does not imply causality." When I was an undergraduate student in statistics, that phrase was drummed into my head. Simply put, it means that two things can be related without one causing the other. For example, having blonde hair is correlated with having blue eyes, but one would not say that there is a cause and effect relationship between the two. It is possible that instead of one event causing another, they are both caused by a third event. Blonde hair and blue eyes are linked because the genes responsible for hair and eye color occur close together on the same chromosome.
I remembered the distinction between correlation and causality all through my undergraduate years and during my graduate training, which included a master's degree in biostatistics. I continued to remind myself and my coworkers of this basic truth during my thirteen years as a biostatistician at the Centers for Disease Control and Prevention (CDC). However, when my daughter, Kendra, was born seven years ago, the phrase took on a much more personal meaning.
Kendra was born blind. The merry-go-round of therapies, appointments, and doctor visits began shortly after we brought her home from the hospital. I had no idea that a tiny baby could require so many therapists! I was told that she needed a physical therapist (PT), an occupational therapist (OT), and a speech therapist (ST). I was told that blind babies automatically are delayed in reaching their developmental milestones. The professionals told me not to expect Kendra to walk until she was two or three years old.
At first I found comfort in those predictions. If my daughter didn't reach a developmental milestone at the same age as most children, there was a ready explanation--it was all because she was blind. However, my sense of comfort faded quickly, to be replaced with feelings of anger and disbelief. There was no way someone was going to tell me that my daughter would be delayed simply because she was blind! I understood that correlation does not imply causality. I believed that being blind could be related to the occurrence of developmental delays, but I did not believe that those delays were caused by blindness itself. Perhaps developmental delays were tied to low expectations or lack of opportunities. The challenge was to counteract the possible negative effects of Kendra's blindness and help her progress at a healthy pace.
One of my first steps was to find therapists who shared my high expectations for my daughter. I learned a lesson that I try to pass on to other parents whenever I get the chance. If a professional believes your child cannot achieve something, he or she is the wrong person for the job. Trust your instincts and remember that you are your child's first teacher.
When my son, R.J., was born three and a half years after Kendra, I truly realized how much a baby learns visually, by observing others. For instance, I never had to teach my son to eat with utensils. He learned by watching other people and imitating what he saw them do. Kendra, on the other hand, needed to be taught how to use a spoon and fork.
We used hand-under-hand techniques to guide Kendra through the scooping motions associated with utensil use. We gave her opportunities to practice scooping sand, rice, and beans into buckets with a shovel. Another trick that worked well was to put small, medium, and large bowls of oatmeal in front of her and have her pretend she was Goldilocks. Today she is a reluctant, yet proficient, utensil user.
Kendra learned to use a spoon in nonvisual ways. Does that mean that being blind somehow made her unable to eat with silverware? I think most people would agree with me that it did not. Does it make any more sense to say that simply being blind prevents a child from walking until the age of three? I don't believe it does. A blind child simply may need alternative methods to learn a skill or to reach a milestone.
If one believes that being blind does not in itself cause delays in walking, then what other factors may be responsible? It is possible that a blind child might lack the motivation to move out into space because he/she can't see that there are interesting things to explore. Perhaps the child fears the unknown and does not wish to move away from a place he/she considers safe and familiar. I do not know whether any of my explanations is the right one. The point to remember is that there may very well be alternative reasons for a blind child's delays.
Kendra walked at fifteen months of age. I don't know if it helped or not, but we bought Pip Squeaker shoes for her when she was an infant. These shoes squeak when the child bears weight on her/his feet. The sound helped motivate Kendra to place her feet on the ground. When she was eighteen months old she got her first NFB cane. The cane extended the boundaries of her world and gave her feedback about the things around her.
Blindness in children is considered a low-incidence disability. According to estimates from the 2007 Annual Report of the American Printing House for the Blind, there are 57,696 legally blind children (ages 0-21) in the United States. Numerous studies have reported that over half of all blind children have additional disabilities. After putting Kendra through extensive genetic testing when she was a baby, the doctors still don't know why she has her combination of eye conditions. At first they thought she only had unilateral microphthalmia and cataracts. Later the list grew to include bilateral microphthalmia, aniridia, retinal detachment, and PHPV (peristent hyperplastic primary vitreous.) For several years I felt as though I was constantly waiting for the other shoe to drop. After all, doctors never determined why Kendra was blind; I was left wondering what other conditions might reveal themselves as she got older.
I've lost track of the number of disorders I worried about in Kendra's early years. My fear that another disability would suddenly manifest itself often led me to jump to conclusions based on things I read or observed. Was her head too small? Perhaps she had microcephaly. Did she have the type of aniridia that is linked with Wilms' tumor? Perhaps she had WAGR syndrome. Did she have more tantrums than a typical two-year-old? Maybe she had autism. This last fear concerned me most of all.
In a paper presented in August 2002, Norwegian psychologist Knut Brandsborg commented that most young blind children meet at least two or three of the twelve criteria for autism--just by being blind. For example, one criterion for placement on the autism spectrum is failure to make eye contact with others. He goes on to say, "The sum of all the consequences of being born blind, combined with the way sighted people interact with [blind children], may give a sufficient explanation for the development of additional problems that are usually called 'autistic'".
I found Brandsborg's discussion of joint attention to be very interesting and thought-provoking. Joint attention is the process of sharing one's experience of observing an object or event. The definition includes references to following another person's gaze or pointing gesture. An inability to display joint attention is one of the hallmarks of autism in sighted people.
A sighted child generally receives feedback through both sight and hearing. For example, while exploring a new toy with a parent, the sighted child most likely shares looking at the doll and hearing the discussion about it. This sharing leads to the development of joint attention. A blind child does not receive visual feedback from the parent. Is it possible that tactually exploring the new toy together with the child would adequately replace the shared gazes?
In our family, we have always explored things tactually with Kendra. In fact, when she feels something interesting, she guides our hands to touch it as she talks about it with us. I don't think it was ever a conscious decision on our part to join Kendra in touching things; it just seemed the natural way to share an experience with someone who can't see. Did our tactual joint attention contribute to Kendra's willingness, from a very early age, to bring things to others for shared exploration? If so, it's a strategy worth emphasizing to other parents.
I was completely devastated when I heard that one of Kendra's preschool teachers thought she was autistic. I suspect the teacher's belief was based on Kendra's reactions to certain sounds and her difficulty dealing with changes in her routine. At the time I wondered whether that teacher would have held the same opinion if everything else had been equal, but Kendra had been sighted. Does a child's blindness make us more likely to search for other diagnoses? Do we attribute behaviors in a blind child to the blindness, when those same behaviors in a sighted child would be scrutinized less closely or dismissed altogether? I believe that "yes" is often the answer to both of these questions.
A blind child needs alternative methods for learning to eat with utensils. Are there alternative methods for interacting with a blind child that would decrease the autistic-like behaviors noted so often? I have provided few answers in this piece, but I hope I have raised some important questions. With careful thought and research, perhaps we can sweep aside the notion that, in the case of blind children, correlation implies causality.
by Deborah Kendrick
From the Editor: Deborah Kendrick is a widely published journalist who lives in Cincinnati. Her weekly column on disabilities has run in a variety of newspapers across the country. Currently she serves as secretary of the NFB of Ohio and coordinator of Ohio's mentoring program.
The email gave me a jolt that left me temporarily immobilized. "Our friend is terribly ill," it said. Through a haze of shock I registered the news that here was yet another one--not a close friend, but certainly a man I knew and admired. The dreaded "other shoe" had dropped.
We are members of a kind of family, this man and I. Many members don't know I exist. Yet when I read about them in a news story or a comment on a blog, I feel our connection. I felt it when Ben Underwood died early in 2009; Ben was the blind teen who dazzled national viewers with his amazing ability to ride his bike, shoot hoops, and skateboard using echolocation. I felt the connection when Jeff Healey, an extraordinary Canadian guitarist, died in 2008. Then there are closer encounters, such as the kind, humble, intelligent man referenced in that email. There are people I have met at conferences, and there is my roommate from guide dog training.
The thread that connects us is a rare childhood cancer called retinoblastoma (RB) that can lead to blindness. If detected early, it has an extremely high survival rate. Yet one of every four of us adult survivors will eventually experience other malignancies, usually fatal ones, and the odds increase as we grow older. My "other shoe" came in the form of a rare sarcoma wrapped around the femur, the large bone in my left thigh. It was radiated and removed. Seven years later, I try to outweigh the ordinary irritations of work and family with the gratitude I should feel every day.
About three hundred children in the United States are diagnosed with retinoblastoma each year. They belong to every race and come from every faith and socioeconomic group. Their survival rate after age five is exceedingly promising. (The 90 percent survival rate for African American children is slightly lower than the survival rate of 93 percent recorded for white children.)
Although retinoblastoma is a low-incidence condition, it has played an extremely significant role in cancer research. In mathematical analyses of the occurrences of the tumors, researchers came upon the role of tumor suppression. For this reason, the gene that can carry the retinoblastoma condition has been called the RB gene. Most people have the RB gene in its healthy form. In a child who develops the cancer, however, the gene's tumor suppression capability is missing. In the retinoblastoma patient cells divide and keep multiplying until a mass, or tumor, results. This same defective RB gene carries markers for other malignancies, partially explaining why so many of us retinoblastoma survivors develop other cancers down the road.
Although the survival rate for retinoblastoma is high, early detection is crucial for the saving of life or eyesight. A few years ago, two young mothers made national headlines when one saw the online photo of the other's baby and recognized the peculiar reflection from the eye that is sometimes a symptom of the retinal tumor. My grandfather once told me that he saw the glow reflected off my right eye when I was nine months old. He insisted that my mother pay an immediate visit to the pediatrician. The upshot was removal of that eye, "full of cancer," as the ophthalmologist expressed it. The family remained vigilant until the disease visited my left eye four years later. (Leukocoria, as the whiteness of the retina is called, does not necessarily mean that a child has cancer. It can indicate other eye conditions as well.)
Because retinoblastoma is a childhood cancer, rarely detected after age six and usually occurring before a child's first birthday, baby eye exams are essential. A California-based nonprofit, Retinoblastoma International (RI), is dedicated to promoting infant eye exams. It raises funds to make exams available to families at all income levels. Three actors with personal experience of retinoblastoma have lent their talents to public service announcements on behalf of RI's efforts. Hunter Tylo's daughter was diagnosed at three months and Matthew Ashford's daughter at four months. Peter Falk lost one eye to retinoblastoma at age three.
When Peter Falk was born in 1927, the only treatment for retinoblastoma was removal of the affected eye. Fortunately, Falk is going strong eighty years later! By the time I was diagnosed in the 1950s, the power of radiation to eradicate tumors had been discovered. Radiation technology was much cruder than it is today, and time would reveal significant drawbacks. Often, as in my own case, the excessive radiation failed and the eye was ultimately removed anyway. Researchers came to recognize a higher incidence of brain or facial cancers near the site of the radiation. Among children whose radiation treatments were administered before age one, the occurrence of additional cancers was particularly high. Other repercussions sometimes occurred as well. My excessive radiation at age five has been linked to a hearing loss that began in my adolescence and is now ranked as moderate to severe.
Today treatment varies according to the severity or nature of the RB tumor. Far more sophisticated radiation therapy is sometimes used, as are chemotherapy, cryotherapy (freezing), or laser treatments. Sometimes the only way to save a life is still to sacrifice one or both eyes.
Retinoblastoma can be inherited from a parent who also had the disease. It may also result from a sporadic mutation, one that occurs for the first time in a child with no family history of RB. RB can be unilateral, affecting only one eye; or bilateral, occurring in both eyes. In my case retinoblastoma was sporadic and bilateral. It came out of nowhere and affected both of my eyes.
There is a 50 percent likelihood, or one out of two, that the child of a parent with bilateral retinoblastoma will inherit the cancer. In 1980 30 percent of all retinoblastoma cases were bilateral. Today the bilateral form accounts for more than 40 percent of all RB cases. Dr. James Augsberger, a recognized expert in the treatment of children with retinoblastoma and chair of the Department of Ophthalmology at the University of Cincinnati's College of Medicine, explains that three decades ago few retinoblastoma survivors were having children. "Today," he says, "they're saying, 'Well, it turned out all right for me.'" While that explanation doesn't entirely cover the sequence of events that led to my giving birth to three now-grown children, the sentiment somewhat reflects my attitude.
As I was growing up, I was told almost nothing about my medical history. I was seven months pregnant with my first child when my husband and I learned that my blindness was due to a highly hereditary disease. If the disease had only resulted in blindness, I doubt that we would have been exceedingly troubled. My life, after all, was filled with joy, success, and adventure. But retinoblastoma was more than blindness. It was cancer, cancer with the possibility of metastasis to the brain, spine, or other parts of the body. Fortunately, we found a brilliant ophthalmologist who armed us with piles of information and a positive attitude. Treatment in the 1970s, he assured us, was far more sophisticated than treatment in the 1950s. Since early detection was key, we were ahead of many parents in that we knew to look for the danger. Each of our children was routinely examined from birth to age six--sometimes under anesthesia and sometimes not. At last came the day of blessed relief when the ophthalmologist examined my six-year-old youngest child and said he never wanted to see her again!
If you are reading this article you may be the parent of a child diagnosed with retinoblastoma. You want to know what quality of life your child can expect in the future. If your child has been diagnosed with this rare tumor, he or she is in good company. RB survivors are generally intelligent, creative, well-oriented, social beings, and they tend to be high achievers. Among them are world champion skiers, clinical psychologists, college professors, award-winning writers, executive directors in the for-profit and nonprofit sectors, assistive technology developers, lawyers, and public relations gurus. Peter Falk of the Columbo series and The Princess Bride is perhaps the oldest well-known RB survivor, with numerous film credits and a memoir to his name. Jeff Healey, the Canadian musician, received accolades from peers and fans alike in multiple musical genres including rock, blues, and jazz. He appeared with Patrick Swayze in the film Roadhouse in the 1980s. While the film may not be the most memorable of Hollywood's productions, the obvious success of this RB survivor is undeniable.
As yet no research has explored the high achievement levels attributed to survivors of RB. Because retinoblastoma occurs in early childhood, children who lose their sight as a result are at an ideal age to become proficient in Braille and other blindness techniques. Good skills may help explain why so many RB survivors have pursued higher education and professional careers. Few of us spend much time looking back.
Regarding my decision to become a parent, I recognize that my three children and I were astonishingly lucky. All three are RB free. Occasionally the cancer skips a generation, and my kids are informed and ready. They want to have children someday, they all tell me, and they know enough to be on the lookout for the warning signs of RB. To avoid the cancer altogether, they might consider looking for the gene proactively, since that particular genetic testing is now an option. They also know that blindness is no detriment to living a full and wonderful life.
Like a host of other RB survivors, I have been blessed with warm friendships, a rewarding career, and cherished family ties. There are certainly risks involved with this low-incidence cause of blindness, but life itself is a risky business for everyone. If the tumor is detected and treated early--whether or not that treatment results in blindness--retinoblastoma is just one more risk worth taking.
by Katherine Schneider, PhD
Edina, MN: Beaver's Pond Press, Inc., 2010.
28 pages, $18.95
Reviewed by Janna Stein
From the Editor: When she was growing up Janna Stein regularly attended NFB conventions and seminars for parents of blind children. She is currently enrolled in a master's degree program at Northern Illinois University, studying to become a teacher of the visually impaired.
The first thing I noticed about Your Treasure Hunt was the array of brightly colored, eye-catching pictures on every page. The bunch of yellow dandelions on the cover relates to an anecdote the author recounts about the day she realized she was blind.
Although the book is ostensibly geared for young readers, I think Your Treasure Hunt will be most useful for parents or teachers of blind children. It can serve as a good jumping-off point to start a discussion about disability. Schneider offers many brief tales from her childhood, each followed by an introspective question for the young reader. After one anecdote she asks, "What are things that you are scared to do? How do you decide which ones you will try?" The questions encourage the child to think about how best to deal with some of the frustrations and setbacks that may go along with a disability. Speaking to the reader from personal experience, Schneider does not use a tone of pity. She encourages the child to think about and pursue future goals.
Your Treasure Hunt uses a straightforward, conversational manner of writing that is appealing in its frankness. However, it may prove tiresome to children who expect a picture book to take them away to a magical land of stories. The book uses little humor and few plot devices that would hold the attention of a small child. You may find your child squirming on your lap around the halfway point of this book.
With that said, Your Treasure Hunt may still be valuable in a number of situations. A teacher might use one of the questions from the book as part of a lesson on diversity or the healthy expression of emotions. A parent might curl up with a child and read a portion of this book to spark a conversation about what it means to have a disability.
Your Treasure Hunt features a helpful resource section for parents and teachers. There you can find a list of award-winning novels for young readers that include characters with disabilities. The resource section also lists sources of books in alternative formats and organizations that may be useful to parents or teachers of blind children or children with other disabilities.
The intentions behind this book are pure and good. Your Treasure Hunt emphasizes perseverance, optimism, and the idea that hard work will be rewarded. Katherine Schneider assures the young reader that it is normal to encounter barriers on one's "treasure hunt," but the gold can undoubtedly be found.
by Carol Castellano
From the Editor: Carol Castellano is president of the National Organization of Parents of Blind Children (NOPBC). If you are the parent or teacher of a blind child and have considered attending the NFB convention in Dallas this summer, the following article may help you make your decision.
I remember well my first reaction on that fateful day. My husband and I walked into the neonatal ICU, where our baby daughter had been a patient since her extremely premature birth four months before. A blur of doctors in green scrubs hovered over her bed. "Her retinas have detached," they told us. "It is stage four. There is a good chance that she is going to be blind." My first thought was: how is she going to get an education?
The education and development of our children are primary and pressing concerns for parents. Our questions are many, and our need for information is deep. We worry: Will our children learn? Where will they go to school? Will they be accepted? How will they get around? What will happen as they grow up?
All of us have contemplated--sometimes with fear--our children's future as blind persons. What do we imagine when we look down that road? A life of sadness, helplessness, and dependence? Or a future of competence, confidence, and empowerment for our child? I know now that what we see depends largely upon what we have come to believe about blindness.
Our children's ability to achieve independence and a full life--to whatever degree their potential allows--depends to a great extent on the foundation their education provides. And the quality of their education depends to a great degree on the training and expectations of those teaching them. So it makes sense that we parents are concerned both with educating our children--from the bottom up--and with the education their teachers receive--the top down. Our children need to be educated by teachers with high expectations and hopes for their future, and their teachers need to be educated by professors who share the progressive views and positive thinking of the National Organization of Parents of Blind Children and the National Federation of the Blind.
As I look back over the years, I can hardly believe I was so worried. My daughter is now a college graduate who has worked at a real job and is contemplating graduate school. We credit the positive philosophy, high expectations, mentoring, and guidance of the NOPBC and the NFB as the inspiration behind our daughter's success. My family received so much from our association with NOPBC and the NFB and from our convention experiences. I want that for your family too.
Each year at our annual conference, the National Organization of Parents of Blind Children brings parents together with experts who can address their information needs, answer pressing questions, and provide not only tips, techniques, and advice, but also inspiration and hope. Our conference is a wonderful opportunity for parents and children to meet other families and blind adults from across the nation, many of whom will become mentors, role models, and lifelong friends. It's also a great place to have fun. We hope very much that you will join us this year.
Following is some insider information and a description of the special NOPBC activities for parents, children, and youth that will take place at the NFB national convention this year.
Saturday, July 3
Full-Day Seminar for Parents, Teachers, and Rehabilitation and Orientation and Mobility Professionals
Welcome--Carol Castellano, president, NOPBC; Dr. Eddie Bell, director, Professional Development and Research Institute on Blindness (PDRIB), Louisiana Tech University
Kid Talk with Dr. Marc Maurer--Kids get a chance to speak to the president of the National Federation of the Blind about anything that's on their minds
From Alchemy to Chemistry: A Blind Scientist Breaks Through--Cary Supalo, chemist and PhD candidate at Penn State University
Youth Panel: Imagine the Possibilities--Mark Riccobono, executive director, NFB Jernigan Institute; Student Panelists
Teacher Training: The State of the Art--Dr. Ruby Ryles, Louisiana Tech University; Dr. Jerry Petroff, The College of New Jersey
Education: Top Down and Bottom Up--Dr. Fred Schroeder, 1st vice president, National Federation of the Blind and president, NFB of Virginia
Rehabilitation Training: The State of the Art--Dr. Edward Bell, Director, PDRIB, Louisiana Tech University
Note: At 10:20 young people and children not already at NFB Camp leave for the following activities:
NOPBC Children's Activities will take place in NFB Camp (childcare). Be sure to register your child with camp-form elsewhere in this issue. Children in the Kid Talk session who are signed up for the Make-a-Book Workshop will be escorted to NFB Camp after the Youth Panel.
10:45 a.m.--Make-a-Book Workshop, (ages five to ten, in NFB Camp)
Children will work with writers from the NFB Writers Division to create beautiful story or poetry books to take home and forever remember Dallas 2010.
10:30-Noon--NFB Junior Youth Track and Youth Track Sessions Sponsored by NFB Jernigan Institute
for youth ages eleven to fourteen and fourteen to eighteen.
12:00-2:00 p.m.--Lunch on your own; pick up children from childcare
1:30 p.m.--Childcare Reopens
2:00-3:00 p.m.--NOPBC Concurrent Sessions for Parents
The Conquest of Independence
Discover ways to foster and encourage the natural drive toward independence and to avoid hindering it. This workshop will offer helpful strategies for raising and working with the blind child in the early years of development. Instructor: Carla McQuillan, founder and executive director, Main Street Montessori Association
The Blind Student in Science Class
Tools and techniques are available to include blind students in all aspects of science class, from elementary through AP courses. Instructors: Cary Supalo, Dr. Lillian Rankel, science teacher; Marilyn Winograd, TVI; Dr. Andrew Greenberg, chemist
Braille Reading Rates
Can Braille readers compete? What does the research really show? This workshop will include Braille reading demonstrations and information on how your child can become a Braille reading speed demon! Instructors: Dr. Eric Vasiliauskas, parent; Jerry Whittle, Braille teacher
Let Your Child Grow Up
When is the right time to begin stepping back as a parent? When is your child really ready for more independence? Instructors: Rosy Carranza, program services coordinator, NFB Affiliate Action; Andrea Beasley, parent
3:15-4:15 p.m.--NOPBC Concurrent Sessions for Parents
ABC and 1, 2, 3
How to create an atmosphere that encourages the development of early literacy and number understanding in the young child in the home and at school. Instructors: Heather Field, special educator; Stephanie Kieszak- Holloway, parent
I Survived Math Class
Strategies and tips for ensuring that your child learns, keeps up with, and even learns to love math. Instructor: TBA; panel of blind students
The area of social interaction is often a concern for parents. This workshop will explore strategies for fostering the development of age-appropriate social skills in the young blind child. Instructors: Denise Mackenstadt and Angela Frederick
Low Vision: Focus on Success
Sometimes it feels as if the low-vision child is caught between two worlds. This workshop will explore the reality of having low vision and will offer ways to ensure that the child is prepared with techniques and tools for success in school, at home, and in social life. Instructors: Mark Riccobono, executive director, NFB Jernigan Institute; Marla Palmer, parent
4:30-5:30 p.m.--NOPBC Concurrent Sessions for Parents
Get Your Child Going
How can you get your child moving and exploring the world? Explore ways to enhance and promote independent movement in the young or delayed child. Instructor: Denise Mackenstadt, NOMC
What technology do blind kids need and when? Come learn what technology is available and hear from students on how they employ it. Instructor: Richard Holloway, parent; blind students
Behavior: From Control to Support in Five Easy Lessons
This workshop will focus on problem behavior in blind and vision- impaired children and how parents and teachers can use the positive behavior support approach to support the child's behavior and encourage self-determination. Instructor: Dr. Jerry Petroff, The College of New Jersey
Is Your Child Job-Ready?
This workshop will focus on the many components of job readiness, how your child can gain experience and skills, and the role of the child, the parent, school guidance, and vocational rehabilitation. Instructor: TBA
3:30 p.m.--NOPBC Children's Activity (ages five to ten, in NFB Camp)
Diggin' into Science
Children will participate in interesting and exciting hands-on science activities involving instant snow, glaciers, magnets, UFO ball chains, Alka Seltzer rockets, and volcanoes. Instructors: Dr. Lillian A. Rankel, science teacher; Marilyn Winograd, teacher of the visually impaired
Note: NOPBC children's activities will take place in NFB Camp (childcare). Be sure to register your child for camp.
2:00-5:00 p.m.--NFB Junior Youth Track and Youth Track Sessions
High School Readiness--Junior Youth Track
College Readiness--Youth Track
Fashion--Junior Youth Track
Fitness--Junior Youth Track
5:00-7:00 p.m. Mix and Mingle Reception--Professionals and Parents
7:00-9:00 p.m. -NOPBC Family Hospitality
Relax and chat in an informal atmosphere. This is a great opportunity for new families to meet and connect with others. Veteran parents will be on hand to welcome and provide information.
Sunday, July 4
No NFB Camp on this day
9:00-10:30 a.m.--Cane Walk Session I
11:00 a.m.-12:30 p.m. -Cane Walk Session II
Learn and experience the discovery method of travel at these special workshops. Parents, teachers, blind children, siblings welcome. Coordinator: Jeff Altman, NOMC
4:00-5:30 p.m.--NFB Junior Youth Track and Youth Track Activity
Writers Workshop (ages eleven to fourteen and fourteen to eighteen)
Create an original work of art with members of the NFB Writers Division.
Monday, July 5
11:00 a.m.-12:30 p.m.--NFB Junior Youth and Youth Track Activity
Meet and greet with NFB division representatives.
1:00-4:15 p.m.--NOPBC Annual Meeting: Issues and Advances in Education
Keynote address by the 2010 Distinguished Educator of Blind Children, Issues and Advances in Accessible Textbooks, special guest speakers, Braille Readers Are Leaders and Writers Workshop presentation, Summer Programs for our kids, Parent Power, business meeting, elections, and much more!
1:00-4:30 p.m.--NOPBC Activities for Middle and High Schoolers
1:00-2:30 p.m.--Diggin' into Science (ages eleven to fourteen)
In this hands-on session, children will participate in interesting and exciting science activities involving instant snow, glaciers, magnets, UFO ball chains, Alka Seltzer rockets, and volcanoes. Children will learn the science principles behind the activities as they test the behavior of different materials and learn that hands-on exploration leads to enjoyable science without the need for sight. Instructors: Dr. Lillian A. Rankel, science teacher; Marilyn Winograd, teacher of the visually impaired; with assistance from Cary Supalo, chemist; and Dr. Andrew Greenberg, chemist
3:00-4:30 p.m.--Peer-to-Peer Technology (ages eleven to eighteen)
Calling all geeks! Come teach, share tips and advice, and learn from others. middle schoolers and high schoolers can expound on the technology they love and the technology they love to hate. Moderators: TBA
3:00-4:30 p.m.--The Future Is Here in Science (ages fourteen to eighteen)
Enter a world of discovery as you engage in hands-on chemistry activities and explore science from a new perspective. Understand chemical phenomena and empower yourself to learn science in a whole new way. Use a cutting-edge laboratory interface for more independence in the laboratory classroom. Limit: twenty-four participants. Instructors: Cary Supalo, Dr. Andrew Greenberg, Dr. Lillian Rankel, Marilyn Winograd
5:00-7:00 p.m.--Braille Book Flea Market
A book lover's dream. Come browse tables of new and used Braille and print/Braille books. UPS volunteers will ship the books to your home free of charge. Donations requested to support the Braille Readers Are Leaders program. Cosponsored by NOPBC and NAPUB. Coordinator: Peggy Chong
7:00-8:00 p.m.--Girl Talk and Guy Talk
Four separate sessions for guys and girls eleven to fourteen and fourteen to eighteen. Led by experienced blind mentors--no parents allowed.
7:30-9:00 p.m.--Dads' Night Out
All dads, sighted and blind, are welcome.
Tuesday, July 6
7:00-8:30 p.m.--NOPBC Concurrent Sessions for Parents
IEP Workshop for Beginners
This workshop will focus on the basic principles of writing an effective IEP for parents who are more at the beginning of the process. Topics will include evaluations, goals, strategies, and what the law says. Instructor: Carlton Walker, parent and attorney
Getting to Yes
When all members of the team are pulling in the same direction, more progress will be made. This workshop will focus on ways to resolve conflict so that your child can benefit and make the most progress. Instructor: Dan Frye, trained legal advocate
Tactile Maps and the Development of Spatial Awareness
Spatial awareness enables a blind person to travel safely and independently. This workshop will explore ways to promote the development of this important skill in your child. Instructor: Debbie Kent Stein, editor, Future Reflections
8:30-10:00 p.m.--NOPBC Concurrent Sessions for Parents
IEP Workshop for Veteran Parents
This workshop will be for parents who have been through the IEP process a few times but still need assistance in getting a good education plan in place. Instructor: Carlton Walker, parent and attorney
This workshop will examine issues of testing and accommodations in statewide standardized tests and college entrance tests. Instructors: Barbara Mathews, parent and attorney, and a representative of the College Board
Having accessible materials ready at the time they are needed is a key component of making the education of a blind child work. This workshop will explore ways to adapt and create useable materials for student success. Instructor: TBA
7:00-10:00 p.m.--NOPBC Activity for Kids (ages six to fourteen)
Kids whose parents are attending NOPBC workshops are invited to come for an evening of hands-on astronomy, crafts, games, and movies.
7:00-8:00 p.m.--Astronomy at Your Fingertips
Fun-filled astronomy-related activities in an out-of-this-world workshop. Instructor: Noreen Grice, astronomer
8:00-10:00 p.m.--Crafts, Games, Movies
7:00-10:00 p.m.--NFB Youth Track Activity (ages fourteen to eighteen)
Throwback Dance Party
Wednesday, July 7
7:00-8:45 a.m.--NOPBC Board Meeting
NOPBC Insider Information
National convention is a complicated week of events. Here are a few tips to help you stay organized and take advantage of the many opportunities that will be available
Enclose a check made out to NOPBC and mail with this form to:
Pat Renfranz, NOPBC Treasurer
397 Middle Oak Lane
Salt Lake City, UT 84108
Save money by preregistering. Preregistration must be postmarked by June 10. After June 10 please register onsite in Dallas.
FEES By June 10 Onsite in Dallas
Adult $25 $30
Child 5-12 years $5 $10
Youth 13-18 years $15 $20
Adult Name ____________________________________________________
[ ] parent [ ] professional [ ] other____________________
Adult Name ____________________________________________________
[ ] parent [ ] professional [ ] other____________________
Please list additional adults on a separate sheet.
City _____________________ State _______ Zip _____________
Phone _______________________ Email ____________________________
Alt. phone ____________________
Children's names (first and last), ages, and brief description of vision and any additional disabilities: ______________________________________________________________________ ______________________________________________________________________ _______________________________________________________________________
How many? Preregistering by June 10 Onsite reg.
Adults _____ @ $25 = $______ or @ $30 = $______
Children _____ @ $ 5 = $______ or @ $10 = $______
Youth _____ @ $15 = $______ or @ $20 = $______
Total enclosed: $_________
___ I receive Future Reflections
___ I am a member of my state NFB/POBC
___ This is my 1st national convention
___ If not, how many have you attended?
___ I cannot attend the conference, but please put me on the NOPBC mailing list. (Please fill out contact information above and mail in form.)
Please note: Preregistrations postmarked after June 10 will be returned. Also remember that registrations for the NOPBC conference and NFB Camp are separate and must be mailed to different places.
SATURDAY, JULY 3
Children (Please mark how many will attend session.)
NOTE: These activities will take place in NFB Camp (childcare). Child must be registered for NFB Camp in order to attend.
_____ A.M. Session: Make-a-Book Workshop (ages 5-10)
Name _____________________ Age_______
Name _____________________ Age_______
_____ P.M. Session: Diggin' into Science (ages 5-10)
_____ I give my permission for my child to be photographed in this session
Name _____________________ Age_______
Name _____________________ Age_______
Youth (Please mark how many will attend session)
_____ A.M. Jr. Youth Track Activities (ages 11-14 and 14-18)
_____ P.M. High School Readiness (ages 11-14)
_____ P.M. Fashion (ages 11-14) or _____ P.M. Fitness (ages 11-14)
_____ P.M. College Readiness (ages 14-18)
_____ P.M. Fashion (ages 14-18) or _____ P.M. Fitness (ages 14-18)
Adults 2:00-3:00 p.m. (Please mark how many will attend session)
_____ The Conquest of Independence
_____ The Blind Student in Science Class
_____ Braille Reading Rates
_____ Let Your Child Grow Up
3:15-4:15 p.m. (Please mark how many will attend session)
_____ ABC and 1, 2, 3
_____ I Survived Math Class
_____ Social Skills
_____ Low Vision: Focus on Success
4:30-5:30 p.m. (Please mark how many will attend session)
_____ Get Your Child Going
_____ Behavior: From Control to Support in Five Easy Lessons
_____ Is Your Child Job Ready?
SUNDAY, JULY 4 (Please mark how many will attend session)
Cane Walk Session I: 9:00-10:30 a.m. _____ adults _____ children
Cane Walk Session II: 11:00 a.m.-12:30 p.m. _____ adults _____ children
Youth (ages 11-14 and 14-18) (Please mark how many will attend session.)
_____ 4:00-5:30 p.m. Writers Workshop
MONDAY, JULY 5
Youth (Please mark how many will attend session.)
_____ 1:00-2:30 p.m. Diggin' into Science (ages 11-14)
_____ I give my permission for my child to be photographed in this session
_____ 3:00-4:30 p.m. Peer-to-Peer Technology (ages 11-14 and 14-18)
_____ 3:00-4:30 p.m. The Future Is Here in Science (ages 14-18) (Sign up early-limited to twenty-four participants)
_____ I give my permission for my child to be photographed in this session
_____ 7:00-8:00 p.m. Girl Talk (ages 11-14)
_____ 7:00-8:00 p.m. Girl Talk (ages 14-18)
_____ 7:00-8:00 p.m. Guy Talk (ages 11-14)
_____ 7:00-8:00 p.m. Guy Talk (ages 14-18)
TUESDAY, JULY 6 (Please mark how many will attend session.) Adults
_____ IEP Workshop for Beginners
_____ Getting to Yes
_____ Tactile Maps and the Development of Spatial Awareness
_____ IEP Workshop for Veteran Parents
_____ Adapting Materials
Children (ages 6-14)
_____ 7:00-8:00 p.m. Astronomy at Your Fingertips
Name _____________________ Age_______
_____ 8:00-10:00 p.m. Crafts, Games, Movies
Name _____________________ Age_______
Youth (ages 14-18)
_____ 7:00-10:00 p.m. Throwback Dance Party
by Carla McQuillan
From the Editor: The childcare service at NFB conventions has for many years been known as NFB Camp. Here are a description of this year's program, the schedule of camp hours, and various registration forms and permission slips. If you are considering placing your youngsters in childcare, please read the following information carefully and note that the deadline for registration, assuming that capacity is not reached sooner, is June 15. Here is the information.
If you are between the ages of six weeks and ten years, NFB Camp is the place to be at national convention in Dallas. During meetings and general convention sessions NFB Camp will be open for fun.
Our camp rooms are divided by age with toys and activities appropriate to the ages served in each room. We have rooms for infants and toddlers, preschoolers, and school-age children. The infants and toddlers spend much of their time in the room with occasional walks around the hotel and stories read from Braille books. The preschool group will enjoy Braille story time, a few arts and craft projects, and small group play on the hotel lawns. The school-age children will have special-guest presentations on writing stories, science and technology, music and movement, and blind people employed in different professions. In addition, we will have daily excursions to the hotel lawns for outdoor games and water play.
NFB Campers will enjoy their own banquet night activities beginning with their meal. Afterwards the children will be dazzled by the exotic animals of the Creature Teacher. Hairless guinea pigs, iguanas, and hedgehogs are just a few of the animals in the Creature Teacher's hands in this educational presentation. Immediately following the Creature Teacher's lesson, the children will relax with a movie and popcorn.
NFB Camp is under the supervision of Carla McQuillan, a longtime member of the Federation. Carla, who is the executive director of Main Street Montessori Association, operating three Montessori schools and a teacher education program, has directed NFB camp since 1996. Alison McQuillan serves as the activities and staff coordinator for camp. Alison monitors the daily programs, drop-off and pick-up, staff-to-child ratios, and ensuring that only parents and authorized adults are allowed into camp rooms.
Each of the three camp rooms has a supervisor who is responsible for the activities of that age group. These leaders are chosen because of their experience and demonstrated capacity to handle groups of children and workers. They are often staff members of Carla's schools. Other workers and camp volunteers are drawn from within the organization. We usually have a mix of blind and sighted teens and adults who trade off for the working shifts throughout the week.
NFB Camp maintains a list of people who are interested in providing care outside of the scheduled hours for camp. The list is at the check-in desk for NFB Camp. Parents are welcome to review names on the list if they are in need of caregivers during off hours. NFB Camp and the National Federation of the Blind are not responsible for the actions and behavior of those on the babysitting list. We do not screen the people; we merely maintain a central list for the convenience of convention attendees.
Because of the limited space, we require that parents wishing to enroll their children in NFB Camp complete and return the registration forms to follow no later than June 15, 2010. You may also email or call to reserve your child(ren)'s space: [email protected] or (541) 726-6924. Any questions can also be directed to Carla McQuillan at the same address, email, and phone.
Completed form and fees must be received on or before June 15, 2010.
City__________ State___________ Zip______ Phone _______________
Cell Phone _______________ Cell Phone _______________
Child(ren)'s Name(s) ___________________________ Age_____
Date of Birth___________
Child(ren)'s Name(s) ___________________________ Age_____
Date of Birth___________
Child(ren)'s Name(s) ___________________________ Age_____
Date of Birth___________
Include description of any disabilities or allergies we should know about:
Who, other than parents, is allowed to pick up your child(ren)?__________
Per Week: $80 first child, $60 siblings No. of Children_____ $_________
(Does not include banquet)
Per Day: $20 per child per day No. of Days_____ x $20 child $_________
(Does not include banquet) S M T W TH (circle)
Banquet: $15 per child No. of children _____ $_________
_____Turkey Sandwich _____Cheese Sandwich
We understand that NFB Camp is being provided as a service to make our convention more enjoyable for both parents and children. We will pick up children immediately following sessions. We understand that, if our child(ren) does not follow the rules or if for any reason staff are unable to care for our child(ren), further access to childcare will be denied.
Parent's Signature _____________________________________ Date ______________
Make checks payable to NFB Camp. Return form to NFB Camp, 5005 Main Street, Springfield, OR 97478; (541) 726-6924; and <www.mainstreetmontessori.org>.
NFB CAMP SCHEDULE
NFB Camp will be open during general convention sessions, division and committee meeting day, and the evening of the banquet. The hours for NFB Camp are tentative. The actual hours will be based on the beginning and ending of sessions so that parents can drop off their children thirty minutes before the start of session and must pick up their children within thirty minutes of the end of session. On occasion the actual end or beginning of session may be earlier or later than the agenda indicates. We charge a $10 per quarter-hour per child late pick-up fee. NFB Camp provides morning and afternoon snacks. You must provide lunch for your children every day.
Date NFB Camp Hours
Saturday, July 3 8:30 a.m.-12:30 p.m. and 1:30 p.m.-5:30 p.m.
Sunday, July 4 Camp is closed.
Monday, July 5 8:30 a.m.-12:30 p.m. and 1:30 p.m.-5:30 p.m.
Tuesday, July 6 9:30 a.m.-12:30 p.m. and 1:30 p.m.-5:30 p.m.
Wednesday, July 7 8:30 a.m.-12:30 p.m. and 1:30 p.m.-5:30 p.m.
Thursday, July 8 8:30 a.m.-12:30 p.m. and 1:30 p.m.-5:30 p.m.
Banquet 6:30 p.m.-30 minutes after adjourn.
Times are tentative and will be based on thirty minutes after sessions adjourn. You are required to provide lunch for your child(ren) each day.
On Monday, July 5, 2010, NFB Camp will be sponsoring a trip for 5- to 12-year-olds to the Stockyard Station in Fort Worth. The children will gather at the hotel in the NFB Camp rooms at 9:00 a.m. We will board a bus and set out for the stockyards. First on the agenda will be a presentation by an authentic cattle herder. This demonstration will include a verbal description of the gear and attire worn by the herders, as well as some hands-on exploration. After that the children will witness one of the oldest and longest-running cattle drives in the country.
After a lunch break the children will experience the cattle pen maze. This was a favorite on the kids' trip in 2008. The children have to work their way through an extensive maze of cattle gates. We found the blind kids often fared better than the sighted ones on this adventure.
When we have spent time solving the maze, we'll get back on the bus and make our way back to the hotel. We estimate our arrival around 4:00 p.m. The cost for this trip is $40 per child ($30 each for those registered for the full week of NFB Camp); this includes all admission fees, transportation, lunch, and an NFB Camp T-shirt. Registration and payment for this trip must be made by June 15, 2010. Priority will be given to NFB Campers, with consideration given to other children on a first-come, first-served basis. This trip is for children ages five to twelve.
The field trip fee for 2010 is $40 per child, unless enrolled for the entire week at NFB Camp; then the fee is $30 per child. The tour leaves at 9:15 a.m. Please have your children at NFB Camp at 9:00. We will return at 4:00 p.m. Please be prepared to pick up your children at this time unless they are enrolled in NFB Camp.
Child's Name _____________________ DOB ______ $______
Child's T-Shirt Size: S M L XL
Sandwich Choice: tuna, turkey, cheese
Child's Name _____________________ DOB ______ $______
Child's T-Shirt Size: S M L XL
Sandwich Choice: tuna, turkey, cheese
Parent's Name _________________________________________
City ______________________ State _______ Zip ____________
Daytime Phone _______________ Evening Phone ____________
Field Trip Permission Slip
Child's Name ___________________________ DOB ___________
Child's Name ___________________________ DOB ___________
Emergency Contact ______________________ Phone __________
Emergency Contact ______________________ Phone __________
(Please list emergency contact names and numbers for people available to respond during convention.)
In the event of an emergency, NFB Camp has my permission to call an ambulance or to take my children to any available physician or hospital at my expense and to obtain medical treatment for my children. In most emergencies, 911 is called and the child is transported to the nearest hospital and seen by the doctor on call. (Parents are always notified as soon as possible.) This permission is effective the date this form is signed and continues for the duration of my children's enrollment at NFB Camp.
Date ____________________, 2010
Please return form and check or money order to:NFB Camp, 5005 Main Street, Springfield, OR 97478
Sleep Patterns in Blind Children and Youth
Contact: Stevie Hodge, Research Assistant
Oregon Health Sciences University
The National Organization of Parents of Blind Children is helping to find participants for an important research study on sleep cycles in blind children and youth. Children and youth with and without sleep difficulties are needed for the study. Participants must be children between the ages of five and eight or young adults ages seventeen to twenty. Qualifying participants will be offered the opportunity to take a low dose of chewable melatonin daily in an effort to adjust their irregular body rhythms. This project has real potential to help families whose children are having difficulty with sleep patterns. If you are interested in finding out more about the project, please contact Ms. Stevie Hodge by phone or email.
Musical Ability in Congenitally Blind Children
Focus on Music 3
Contact: Adam Ockelford, Professor of Music
Roehampton University, Roehampton Lane, London SW155PU
Prof. Adam Ockelford is conducting a series of studies on the musical abilities of children who are congenitally blind due to specific eye conditions. Focus on Music 3 will explore the musicality of children who are blind as a result of Leber's congenital amaurosis (LCA). Focus on Music 1 and Focus on Music 2 studied children with septo-optic dysplasia and retinopathy of prematurity (ROP), respectively. Thus far, these studies suggest that "absolute pitch" appears far more frequently in congenitally blind children than it does in the general population. This research may help educators and others discover the most effective strategies for helping blind young people reach their musical potential, whether they want to engage in musical activities just for fun or with more serious public performance in mind.
National Certification in Literary Braille (NCLB)
Contact: Louise Walch, NCLB Coordinator
Online Registration: <https://nbpcb.org/members/login.php?r=/members/er.php?eid=41>
Application Deadline: June 13, 2010
Testing for national certification in literary Braille will be held at this year's national NFB convention in Dallas. The testing dates are Sunday and Monday, July 4 and 5, 2010, from 1:00-5:00 p.m.
2010 Braille Book Flea Market
Mailing Contact: Vanessa Pena
UPS Customer Counter
Dallas, TX 75229
Every year kids eagerly look forward to the Braille Book Flea Market at the NFB national convention. Braille readers donate hundreds of used books, which kids can select free of charge. If you would like to donate any gently used Braille books for young readers from toddlers to teens, please pack them in cardboard cartons and send them to Vanessa Pena at the above address by June 1. Cartons of Braille books can be sent via US mail as Free Matter for the Blind and Physically Handicapped. If you have questions, contact Peggy Chong at [email protected]
US Association of Blind Athletes (USABA)
2010 Sports Festival and Vision Mission Program
Contact Rich Cardillo
Date: July 28-August 2, 2010
Application Deadline: June 1, 2010
Blind and visually impaired athletes of all ages are invited to participate in the Rocky Mountain State Games in Colorado Springs, Colorado. Athletes of all levels will train, learn, refine their skills, and compete alongside sighted peers in various sports clinics instructed by USABA coaches. Events include archery, cycling, judo, powerlifting, track and field, triathlon, wrestling, and 5K run. Program participants must be or become members of USABA.
Telephone Support for Parents of Blind Children on the Autism Spectrum
Contact: Lisa L. Galdi, PhD
The Jewish Guild for the Blind is starting a free support service for families of children with autism spectrum disorders and visual impairments. This will be a national group conducted through weekly teleconference calls. The group will give participants an opportunity to connect with other parents or guardians on a variety of topics. Issues around children's personal and educational development will be addressed, as well as coping strategies for families.
Mothers United for Moral Support (MUMS)
National Parent-to-Parent Network
150 Custer Ct., Green Bay, WI 54301
MUMS is a national parent-to-parent network whose mission is to help parents who have a child with any disorder, medical condition, mental or emotional disorder, or rare diagnosis make connections with other parents whose children have the same or similar condition. Through a database of over 21,200 families from fifty-six countries, covering over 3,500 disorders, very rare syndromes can be matched. Parents can offer mutual support and exchange valuable information on medical resources and coping strategies.
NORD Rare Disease Support Community
National Organization for Rare Disorders (NORD)
55 Kenosha Ave., P.O. Box 1968, Danbury, CT 06813
NORD is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases. The NORD Rare Disease Support Community connects patients, family, friends, and caregivers for support and encouragement. The Website includes links to hundreds of discussion groups related to specific disorders.
National Family Association for Deaf-Blind
141 Middle Neck Rd., Sands Point, NY 11050
NFADB is a national network of families focusing on issues around deafblindness. It encourages networking among families, and trains and supports families as they advocate for their needs.
American Association of the Deaf-Blind (AADB)
8630 Fenton St., Suite 121, Silver Spring, MD 20910
(301) 495-4403 voice
(301) 495-4402 TTY
(301) 563-9107 Video Phone
AADB is a national consumer organization of deafblind people and their supporters. It maintains an information clearinghouse; sponsors national conferences; publishes a monthly newsletter; and provides advocacy, training, workshops, and involvement with legislators.
Apert Syndrome Forum
Developed by the parents of a child with Apert syndrome, this Website offers networking opportunities and provides links to many sites that focus on craniofacial disorders.
Bandaides and Blackboards
Created by Joan Fleitas, associate professor of nursing at Lehman College, this unique Website is designed for kids and teens who are growing up with chronic medical problems. As Fleitas explains, "These kids have become experts at coping with problems that most of you have never heard of. They'd like you to know how they do it." Sections include kids' personal stories, poetry, and artwork; hints about coping with the hospital; suggestions on how to deal with teasing; essays by siblings; and much more.
National Center for Bullying Prevention
"The end of bullying begins with me," is the motto of the National Center for Bullying Prevention. Through videos, books, online games, and personal stories, the center's Website empowers kids and teens to stand up for themselves and others. An assortment of ideas will help parents and teachers combat bullying at school and in the community.
Dictionary for Parents of Children with Disabilities
Parents of a child with disabilities may find themselves staggering beneath a landslide of new words, phrases, and acronyms. Help is at hand in this online dictionary, created by the South Dakota Department of Special Education and Cultural Affairs, Office of Special Education. Available as a downloadable PDF file, the dictionary provides simple definitions for terms in the fields of testing/evaluation, early intervention, special education, medicine, guardianship, insurance, and more.
Air Charity Network (ACN)
Dedicated to "giving hope wings," ACN helps obtain flights for persons who require specialized medical treatment at a geographically distant location. Mission coordinators work diligently to find volunteer pilots or other transportation resources for qualifying patients and family members.
Next Generation Perkins Brailler
Contact: Marilyn Rea Beyer
The well-loved classic Perkins Brailler has been re-imagined, retaining all the attributes that made it the most widely used Brailler in the world. The Next Generation Perkins Brailler is more portable, more comfortable to use, and quieter than the classic model. New features include an erase button and front panel margin guides. The keys operate with light pressure, providing ease of use for children with limited hand strength.
Children's Braille Book Club
National Braille Press
88 St. Stephen St., Boston, MA 02115
(800) 548-7323 or (617) 266-6160
Join the only children's Braille book club in the country that offers a new print/Braille picture book each month. Geared for children in preschool through third grade, the club offers print books enhanced with Braille text on clear plastic sheets and sold at the same price as the standard print version. Recent titles include the classics Madeline, which contains a tactile drawing of Madeline by artist Ann Cunningham; Mike Mulligan and His Steam Shovel, which comes with an audio CD; and Chicka Chicka Boom Boom (you can buy a set of tactile print letters to accompany this alphabet book). Order a free catalog from National Braille Press by phone or email.