Remarkable Conversations: A guide to developing meaningful communication with children and young adults who are deafblind

By Barbara Miles and Marianne Riggio

This book addresses the needs of children of all abilities, from those who use nonlinguistic forms of communication such as objects or body movements to those who use linguistic forms such as sign language or writing.

• Language: English
• Publisher: eBookIt.com
• Release date: Mar 28, 2019
• ISBN: 9781947954854

Barbara Miles

Barb was five when she thought of Penny. She imagined all the places this little one could go and vowed to someday write her story. Decades later, she has brought Penny to life on the pages of Tales of a Penny, her debut children's book. An unabashed penny lover and squeezer, Barb is a saver, an investor and a business woman living in Boulder, Colorado with her five children. With degrees in psychology and social work, she is a big believer in small change.

Book preview

Reading Remarkable Conversations is like having a series of engaging conversations with experienced teachers. The personal style makes the book highly understandable and useful to families, teachers, and anyone who wants to learn more about communication and deafblindness. The authors celebrate the diversity of people who are deafblind and give practical approaches for creating communication-rich environments for them. Through well-developed case studies and photographs, readers have the opportunity to meet a wide range of children and young adults who are deafblind. These children and young adults teach us much about the ever evolving process of communication development.

This book addresses the needs of children of all abilities, from those who use nonlinguistic forms of communication such as objects or body movements to those who use linguistic forms such as sign language or writing. Remarkable Conversations is invaluable to aspiring teachers, to teachers in special and regular education settings, to families, to clinicians, and to all who advocate for quality programs. The authors clearly establish that it is indeed a privilege to work with and to know people who are deaflblind.

~ Barbara A. B. McLetchie, Ph.D.

Published by Perkins School for the Blind

175 North Beacon Street

Watertown, Massachusetts 02472

Edited by Barbara Miles and Marianne Riggio

Copyedited by Anne Warren Smith

Design: Nieshoff Design, Lexington, Massachusetts

Cover photo: Carol Benoit

©2018

ISBN # 0-9657170-1-1

This publication was made possible by a grant from the Conrad N. Hilton Foundation, Reno, Nevada.

Contents

Contents

Acknowledgements

Foreword

Introduction

CHAPTER 1

What is Communication?

Pre-Linguistic Communication

Communication That Uses Language

Importance of Communication for People Who Are Deafblind

Meet Jason

Meet Vivian

Meet Mary

CHAPTER 2

Understanding Deafblindness

Defining the Population

A Changing Population of Children

Why a Categorical Definition?

Challenges Shared by People Who Are Deafblind

Importance of Assessment

Impact of Sensory Losses on Attachment, Communication, and Concept Development

Importance of Diagnosis and Assessment

Cultural Attitudes Toward Deafblindness

CHAPTER 3

Developing Partnerships With Families

Learning From Families of Children Who Are Deafblind

The Importance of the Family: The Constant Thread

Changing Attitudes, Roles and Needs

The Challenge to Educators

Parents: The Most Enduring Team Members

The Difficult Transition Into Adulthood

Systems for Ongoing Family Support and Training

Establishing Networks Among Families

CHAPTER 4

Conversation: The Essence of Communication

Elements of a Good Conversation

Equal Participation

CHAPTER 5

Environments That Encourage Communication

The Broad View of Communication

Characteristics of the Environment That Encourage Communication

CHAPTER 6

Assessment of Communication

Methods of Assessment

What Do We Assess?

A Teacher’s School-Based Assessment: Fatima

Recommendations for Fatima

Assessment Activities

Assessment of Infants and Toddlers

Clinical Assessments of Communication: Are They Appropriate?

Assessment: An Ongoing Process

CHAPTER 7

Selection of Communication Modes

Selecting Natural and Practical Modes

Working Toward Maximum Fluency

Nonverbal Communication Modes

Verbal Communication Modes

Case Studies

Who Selects the Communication Modes?

CHAPTER 8

Developing Early Communication and Language

Beginning Stages of Communicative Competence in Children Who Are Not Disabled

Guidelines for Encouraging Interaction

Early School Experiences

Strategies for Developing Nonverbal, Gestural Communication

Strategies for Increasing the Child’s Exposure to Words

Strategies for Developing Oral Language

CHAPTER 9

Developing Basic Language Forms

Special Considerations in Developing Language with Students Who Are Deafblind

What Does the Child Need to Learn?

Increasing Vocabulary

Language Activities

Integrating Language Learning into Other Subject Areas

Specific Language Lessons

Literacy as Part of Language Learning

Writing and Language Learning (for Learners with Useful Vision)

Learning Braille

CHAPTER 10

The Development of Complex Language

Developing Language and Concepts

Developing English Language Structures

A Suggested Process for Language Development

How Do We Teach Transformations?

Using Concept Units

Special Considerations for the Child Who Is Totally Blind

Julia’s Story

CHAPTER 11

Adolescents With Multiple Disabilities

Overview of This Population

Challenges Faced by Educators

Communication Challenges

Meeting the Challenges: Fostering Good Communication

Additional Supports to Build Good Communication

Paperwork Challenges

The Challenge of Innovative Living and Work Settings

CHAPTER 12

Looking Toward Adult Life

Communication: Central to Planning for Transition

Communication: Central to Preparing the Individual

Looking at the Bigger Picture

CHAPTER 13

Meeting the Needs of Individual Children

CHAPTER 14

Building a Vision of Quality Services

Quality Education for All Children

Essential Elements of a High Quality System of Services for Children Who Are Deafblind

Ways to Create a Responsive System

Index

Editors

Contributing authors

Photo Credits

Dedication

To all of the children and their families who have been our teachers.

Acknowledgements

We would like to thank the many people who have given us personal and professional support throughout the learning process of preparing this book:

Michael Collins, Director of the Hilton/Perkins Program, for his patient guidance through the evolution of this text, and for reinforcing the value and significance of this book to the field of deafblindness

Kevin Lessard, Director of Perkins School for the Blind, for his generous support and trust in this project

The staff and students of the Deafblind Program at Perkins School for the Blind, for their good humor and generosity during the whole process

Tom Miller, for his guidance and encouragement, and to the staff, volunteers, families and children from the Infant/Toddler Program at Perkins School for the Blind, for sharing with us many joyful images

Nancy Hogan, for her skill and good humor in helping us revise and revise and revise

Betsy McGinnity and Steven Davies, for being so generous with the services of DB-Link as we explored for references and resources, and especially for Steven’s keen proofreading eyes

Barbara McLetchie and Sara Gaar, our expert reviewers from whom we have also learned so much of what we have expressed here

Steve Perreault, Hilton/Perkins Latin American Regional Coordinator, for his cheerful support and for taking Rosie out for cheeseburgers and walks while we labored away

Kimberly Emrick, who made the final production phase so pleasant

Pat Nieshoff, for designing a book that is more beautiful than we had ever imagined possible

John Kennard and Carol Benoit, who helped us to capture the images that so beautifully support our words

Anne Warren Smith, for helping our words flow more smoothly

All of our family and friends, for cheering us on

The Hilton Foundation, for their generous support which has allowed this document to become a reality

Our profound thanks to the many teachers, parents and caregivers of children who are deafblind throughout the world who continue to enlighten us about successful teaching methods and who inspire us with their day-in-and-day-out dedication to the children.

Foreword

The field of deafblindness has long been in need of a comprehensive book about fostering communication. While a great deal has been written on the subject, much of the literature emphasizes specific aspects of communicating with children or young adults, or focuses on specific age groups. By contrast, this work presents a professional analysis of all aspects of communication, from the earliest communicative interactions between mother and baby to the more sophisticated needs of the advanced academic learner. The full spectrum of human dialogue is represented.

From the time that Laura Bridgman and Helen Keller were first educated, to the present day, we have seen a great deal of documentation in the literature of the needs of the deafblind learner, and how these needs are unique and special due to the learner’s combined sensory disabilities. Nevertheless, there is sometimes a tendency to overlook the particular approaches that can make learning possible and most efficient for a person who is deafblind. Even advanced-degree special educators will sometimes pose the question, Exactly what is so unique about this deafblind child’s learning needs? We see many children who are deafblind educated without much thought being given to the adapted communication and instructional techniques necessary for the child to achieve his/her communicative potential.

This book helps us examine teaching. What significantly sets the book apart is that it is written by teachers, for teachers. In this thoughtful text, the authors succeed magnificently in making the reader aware of the wide-ranging impact of deafblindness upon learning and upon life. Through crisp and concise practical examples of their work, and a very personal writing style, they clarify the child’s needs and how to address them in the classroom. Sound educational philosophy and theory combined with pragmatic examples of individual case studies help the reader grasp some of the less obvious principles of educating deafblind children. The authors impart to the reader their many years of first-hand experience working with thousands of children. Their methods of teaching communication and, especially, their pointed insistence that communication is integral to all life experiences for the deafblind child, make this an interesting as well as an informative work. Photographs and illustrations help the reader comprehend methods where verbal description cannot suffice.

It is with a sense of great pride that I introduce this book produced by five educators in the Deafblind Program and the Hilton/Perkins Program at Perkins School for the Blind. They have succeeded in articulating what has been believed at Perkins to be the communication needs of deafblind children for decades. These principles are expressed in clear, simple language for the professional community worldwide. This book will undoubtedly be a valuable resource for the field of deafblindness for decades to come.

Michael T. Collins, Director

Hilton/Perkins Program

Perkins School for the Blind

Watertown, MA

Introduction

If you are reading this, it is very likely that you are fortunate enough to know a person who is deafblind or to be in some form of communication with someone who has limited vision and/or hearing. You might be surprised that we use the word fortunate when referring to a disability as serious as deafblindness. But we who are writing this text mean fortunate. People who are deafblind have significantly enriched our lives. We have much to share with you about what we have learned in our experience of communicating with them. For some of us, this experience spans at least 30 years.

We consider good communication to be central to our positive experiences with persons who are deafblind, and it is for this reason that we have chosen it as an emphasis for our text. Throughout this book you will read stories based upon our positive experiences with real people who are deafblind. These stories have been selected and adapted to help you share in the vitality of our interactions with these people and with their families. We hope that these stories, along with the guidelines for creating communication-rich environments, will help you gain new insights into your own interactions with infants, children and young adults who are deafblind.

The beginning chapters lay the foundation for the development of instructional programs for children who are congenitally deafblind or who have become deafblind early in life. Later chapters look more specifically and sequentially at the nuts and bolts of providing meaningful experiences for these learners. In the final chapters we pull together some of the underlying issues that are fundamental to providing personalized educational services for infants, children and young adults who are deafblind.

We hope that as you complete reading this text you will carry the stories and images with you into your work. May they help bring you increased joy and satisfaction in your relationships with the children and young adults whom you are privileged to know.

The best and most beautiful things in the world cannot be seen, or even touched, they must be felt with the heart.

~

Helen Keller

CHAPTER 1

What is Communication?

Barbara Miles

Communication as connection. What do we mean by communication? Our first response may be that communication is the use of words in a formal language structure. But communication is more—much, much more. It is the means by which people connect with their environment and with other people. Communication is the way we reach out to each other; it is the way we touch each other. Through communication, we connect in the most meaningful sense of the word. Communication IS connection.

People who are deafblind deserve to be connected, just as any living being deserves to be connected. People who are deafblind deserve to have the best quality of life possible. They deserve to be included and to be able to express themselves in an increasingly rich and varied way throughout their lifetimes. They deserve to be heard and respected for what they have to say, however they say it—with language, with gesture, with movement, with voice, with hands, with eyes, with silence.

Pre-Linguistic Communication

Before formal language begins, there is already a complex system of nonverbal connection between caregiver and child. All newborn infants, regardless of whether or not they have severe disabilities, are endowed with certain genetic programming that seems designed to strengthen the communicative link between child and mother. Very young infants with sight, for example, prefer images of faces to random designs, and thus the child is encouraged to prefer face-to-face eye contact over random gaze. As a result, opportunities for communication are maximized.

It has been discovered by psycholinguists that newborn infants are programmed with what is called a burst-pause sucking reflex. The infant at the breast or bottle will naturally pause after a burst of sucking. The effect of this pause is to engage the mother or caregiver in a dialogue-like interaction with the infant. Mother or caregiver must jostle or respond to the infant during this pause in order to encourage her to begin sucking again. Back and forth. A kind of conversation has already begun, although it is a conversation without formal language. The two are in dialogue. They are communicating at a very basic level, in a nonverbal way.

Over the first months and years of a child’s life, this nonverbal dialogue between child and caregiver increases in complexity. Before the child can say her first words, she can already express herself in a wide variety of ways—through laughing, crying, facial expressions, muscular tension or relaxation, gestures such as reaching and pointing, head and body movements such as turning away or toward persons or things, and by a wide variety of behaviors (refusal to do things, for example, or nonverbal attempts to get what she wants through any means at her disposal). Many of the games young children play are actually forms of nonverbal dialogues. Games such as Peek-a-Boo involve a back-and-forth exchange. All of these are forms of communication, and they occur in various combinations in both sensory disabled and nondisabled children.

Communication That Uses Language

Language, a more formal, codified method of communication, develops out of these nonverbal conversations. It develops as a result of the child’s relationships with her caregivers and her ongoing exposure to language. A normally hearing child hears thousands of hours of spoken language before she produces her first words or approximations of words. She learns to attribute meaning to the language she hears because this language happens in the context of relationships in which the nonverbal interactions are already established and meaningful.

Expression of Thoughts

Language is not the only form, but it is part of the whole of what we call communication. Language is symbolic communication and, being symbolic, it has certain features that nonsymbolic forms of communication do not have. Language is abstract. It is used to refer to things that are not physically present. It can refer to past or future events. It can be used to refer to concepts and ideas that do not have concrete physical reality. It can name feelings (happiness, anger, love), classes of things (vegetables, animals, furniture), and abstract ideas (hope, justice, desire).

With language, our thinking capacity increases and becomes more complex, and our ability to have dialogues with people expands. We are able to express things we could not express before we had words for them. Perhaps our perception changes, since, as we develop a vocabulary to name things, we may see the world with increasing precision. What was once, Look at the bird becomes, Oh, that’s a cardinal; that’s a blue jay; that’s a rufous-sided towhee. This precision of seeing may happen not only with literal sight, but with touch, which is sight for the one who is blind. What was once, Feel this chair becomes, Here’s an armchair; here’s a wicker chair; here’s a Chippendale chair.

Infants prefer face-to-face eye contact.

Expression of Feelings

As our perception of physical objects may sharpen when we can name them more precisely, so may our perception of feelings. Learning the word frustrated may engender a whole new relationship to what was previously an amorphous, uncomfortable feeling. Knowing the language to match the feeling may help us tolerate that state with some interest rather than simply exploding in rage or collapsing into passivity. What is more, we can communicate it to another person without having to act it out. Having words for inner feeling states can deepen our connections with others, through knowing that we are understood and that we understand them.

Understanding Relationships

We learn not only words, but also grammatical structures, and these enable us to express the relationships among things, people and events. We can understand, for instance, if someone tells us, We will go swimming tomorrow if it is warm outside, but if it’s cold, we will stay inside and play basketball. This understanding can give us greater flexibility. We are no longer simply hit unaware with life’s possibilities, but we now have ways of anticipating them, ways of understanding the relationships among life’s changing conditions. Power comes with that understanding. Now we can say, I’d rather stay inside even if it is warm tomorrow. We can initiate a dialogue about our participation in life, we can express our likes, dislikes, needs and interests in increasingly complex and precise ways. Once we know the structures to do so, we can also ask questions, request information, and satisfy our curiosity about numerous things. With increasingly rich and precise language and grammar can come increasingly rich and varied involvement in life.

There develops, too, the possibility for an increasingly rich and varied inner life, which can become the source of vital creativity. With language that is more complex, one can wonder, imagine, dream, and hope (perhaps also worry and cogitate) with increasing precision, differentiation and pleasure. This happens in much the same way as one’s relationships with the outer world become enriched as language develops. All of this happens before we even learn to read and write; it happens with the mere acquisition of oral or signed language.

With increasingly rich and precise language and grammar can come increasingly rich and varied involvement in life.

Literacy

Reading and writing open even more doors. When we can read, we have access to information that does not depend on the physical presence of a person for its exchange. We can learn about places in the world that are far from us, ideas that people had centuries ago, instructions for making things, directions for traveling and stories that come out of people’s imaginations. With reading at our disposal, our learning and enjoyment need never cease. And with writing we are empowered to convey our ideas and our experiences to people at a distance. In writing this text, we can convey our experience of communicating with people who are deafblind to you, the reader. A person who is deafblind who knows some form of writing (e.g., typewriting, braille) can convey information to someone even if that person does not know sign language or is at a distance.

Language, including reading and writing, extends our ability to reach out farther and deeper into the surrounding world. This is true if we can see and hear. It is also true, and even more important, if we are missing either our sight or our hearing, or both. People without sight or hearing have greatly reduced access to language. To combat the isolation that is caused by deafblindness, it is crucial that a person have as many other means as possible to make connections, to gather information, and to express himself or herself. Language, including reading and writing, provides essential channels for those people with sensory impairments who are fortunate enough to be taught it and who are able to learn to use it.

Importance of Communication for People Who Are Deafblind

Whether or not a person who is deafblind can learn a formal language system, or can learn to read and write, communication is crucial. We have seen that communication is more than just language. It includes the wide variety of ways in which a person is connected to his or her environment and to the fabric of life.

Communication is of great value at whatever level it can be developed. Having even a limited communication ability makes life better. Maximizing the ability of a person who is deafblind to communicate—to converse—ensures that he is included as much as possible in the fabric of life. It gives him the possibility of controlling his own life; it gives him power and allows him to affect what happens to him and to others.

Before formal language exists, there is already a complex system of nonverbal connection between caregiver and child.

The Responsibility of the Educator

Acknowledging our obligation to teach a person who is deafblind how to communicate well carries profound implications. It assumes a commitment to include that person as much as possible in the flow of life. To take this commitment seriously means we must look at all our interactions with the person who is deafblind, as well as all the interactions that person has with other people and with his or her environment. We cannot address communication goals as if they were an isolated part of a student’s life or educational program. Communication is embedded into cognitive, social, emotional, vocational, and physical development, too. To think clearly about a student’s communication needs is also to think clearly about all these other needs. To help a child or an adult who is deafblind improve her communication is also to help her to enhance the quality of her life in every one of these areas. This is no small task.

Communication skills don’t come easily to the person who is deafblind. People who are deafblind receive distorted information or no information at all from the two senses that most of us use to make our primary connections with our world. To help them learn to connect is difficult, both for them, and for us as their teachers. But we do this because each person who is deafblind deserves to express himself or herself in the best way possible.

Individuals who can see and hear also deserve the privilege of hearing what people who are deafblind have to say. The life experience of these people is unique—an incredible experience of being without, or deficient in, the senses that connect most of us with the world. People who are deafblind are connected in different ways; they know things that sighted and hearing people do not know. Each person who is deafblind has something to contribute, and what they contribute needs to be received. Society as a whole needs to be opened to people who are deafblind, to communicate as fully as possible with each of them in order for everyone to benefit.

Knowing the Individual

Knowing a particular person who is deafblind can bring great enrichment. Communication with children and adults who are deafblind is not based only on principles and methods; we also must speak of specific people and situations. For this reason, we would like to introduce you, here—at the beginning of our discussion of communication with people who are deafblind—to several individuals who are deafblind. They are in the middle of their school careers—young teenagers—already having had many years of schooling, but not yet leading adult lives. As you come to know these individuals through our descriptions, you may want to speculate upon what they must have been like as small children, or what they will become as adults. Later in this text you will be able to check your speculations against reality: We will give you a glimpse into the earlier and later lives of these people. You can see whether your ideas about their potential and their limitations have been too optimistic or too narrow. In doing so, you may become more aware of what kinds of expectations and images you have of children and adults who are deafblind. You might find, like those of us who are writing this text, that you may change your images to fit the reality of the deafblind individuals whom you will come to know.

Here are three of our friends who are deafblind, seen here as teenagers. In their stories, you may see glimpses of students whom you know.

Meet Jason

Jason is 14 years old. He’s a tall, husky boy with a youthful appearance. If it weren’t for his size, you might think he was about 10. He has thick glasses to help correct his nearsightedness, and hearing aids to help correct a moderate-to-severe hearing loss. If you meet him in a hallway, and sign hello, he is likely to look past you toward the elevator, smiling all the while, and begin signing elevator over and over with great animation. If you are not familiar with his sign language, you might not understand what he is saying. He signs quickly, especially when speaking of things he is enthusiastic about, like elevators or copy machines or cameras.

Jason loves machines of any kind. He could stand in front of the elevator pushing the button all day if you left him alone to do that. Or, he could stand for hours and watch the light on the copy machine flash on and off as it made copies. Once a week he has a classroom job to make copies of things the teacher needs. He enjoys that job immensely, as evidenced by the way he runs down the hall to get to the copy machine, laughing and speaking to himself as he lopes along. He makes guttural noises when he attempts to speak. His favorite sound is dah, which he uses many times a day, especially when he is excited, as he is when he does his copying job.

Most of Jason’s expressive language is single signs. He is capable of imitating short signed sentences, but he rarely connects more than two words together himself. More often he just names things, especially the machines that he seems to be thinking about all the time, and important people in his life, like his family and teachers. If he does put two words together, they usually are telegraphic expressions of ideas: tomorrow elevator, Friday home, copy machine light.

Jason is fairly cooperative in the classroom, but he can be very stubborn when he doesn’t want to do something. He doesn’t like written lessons very much, and sometimes will refuse to do them. He likes to read very simple sentences if they are about himself and his experiences, but he does so mostly by rote, and frequently confuses words that begin with the same letter. (He requires large print to see adequately for reading.) He can print a few words from memory. His writing is large, the letters sometimes run together, and he often reverses letters like b and d. He likes to draw, especially pictures of machines, and the times when he is most likely to write independently are when he is labeling these pictures that he has drawn. The times when his teachers get the most frustrated with him are when he doesn’t pay attention to what they are trying to tell him—he looks up with a faraway look and doesn’t concentrate on the lesson; he just smiles to himself.

With all his preoccupation with machines, Jason can also be very affectionate. This year in school his teacher has had to make a rule about not hugging inappropriately, because of Jason’s tendency to hug people indiscriminately. He particularly likes small children, and his bear hugs can sometimes scare them. Just now he is beginning to be able to control this impulse, and if he is reminded, he will extend his hand for a handshake rather than rush into a hug. ❦

Meet Vivian

Vivian is 16 years old. She is slight, with pale skin and rounded shoulders. Vivian looks older than her years. When she walks, she cocks her head to one side (the right) and frequently has her hand up near her right eye. She has learned that if she does this she can peer through a slit made by two fingers, and she can see a clearer image. She only has vision in this one eye, and she is very nearsighted. The other eye is a false eye that replaces one that was removed two years ago. She has not been able to see out of it since she was an infant when she was injured, possibly in an accident, but the records are not clear about this.

She has a hearing aid. It is a body aid in a harness that she wears over a sweater; wires extend from either side of the aid to earmolds in her ears.

When you come closer to Vivian, you see that she is younger than you may have thought from a distance. She smiles and laughs easily if you are smiling yourself, and when she does so her face lights up, and you can tell that she is a teenager. If, however, you show any disapproval of her, she is likely to lapse into a worried expression or dissolve into tears.

Most mornings she enters the classroom complaining of some sort of physical ailment. She often points to her head or to her stomach and signs hurt. If she is late for school her teacher knows to call the school nurse, because Vivian sometimes goes there to talk to the nurse about what is bothering her. The nurse does not know any sign language, but Vivian draws pictures, bent over the paper with her nose inches away, and tries to write words to make the nurse understand. Vivian’s memory for spelling is poor, so she is likely to write things like hrut (meaning hurt) or haed (meaning head). The nurse listens and looks patiently, and sends Vivian to class with her daily vitamin.

In school Vivian tries hard to please her teachers, often touching them and looking to them for approval. She uses sign language to communicate with them, and though she has never been explicitly taught it, her structure is that of ASL (American Sign Language). When she signs, she gestures and points a great deal, and draws pictures in the air with her hands. When describing a person, for example, she will often sculpt the person’s hair with her hands, using her own head as an imaginary model of the person she is referring to. When pushed, she can form simple sentences with English structure, but most of the time she relies upon two- or three-word phrases. She is animated when she is trying to talk about something that is important to her, and will excitedly and nervously reach for nearby paper and pencil to draw, or to write single words or phrases—she will do anything to make sure you have understood her correctly. Her sign language vocabulary at this age is about 500 words, so she is able to make herself understood about most things that concern her. She still has some trouble expressing her feelings accurately; she only has a few words to describe them, but she seems to have a complicated range of feelings that can be observed in her constantly changing body language and facial expressions.

Her teacher is beginning to try to teach her to use some communication devices that she might need as an adult. Vivian is not confident of her written language skills, especially when it comes to using sentences, as she is supposed to do when she uses the large print TDD (telecommunication phone device for the deaf). She becomes easily frustrated, and often dissolves into tears during these lessons.

Vivian enjoys small children, and helps out in a preschool classroom one morning a week. Her nonverbal expressiveness makes her a good playmate for the three- and four-year-olds. She sometimes acts motherly toward them, patting them or consoling them if they are upset; at other times she is playful, joining them in their rough-housing or doll play.

She likes cooking class, too, which she takes once a week. She has always enjoyed playing house, and when you see her in cooking class it might almost seem like an extension of that—she becomes very serious, concentrating hard. If she avoids getting too nervous, she can follow the simple picture recipes well. Sometimes she gets flustered, and then she loses her attention to the activity. If her teacher tries to calmly question her during these flustered times, she may have to ask five or six times before Vivian can tell her which step of the recipe she is stuck on, or what missing item she is searching for. ❦

Meet Julia

Julia is 15 years old. She has curly brown hair, and a pretty face. She usually has to wear dark glasses because any bright light hurts her eyes. Even indoors, she has them on a great deal of the time, especially in the spring and summer when the glare from the bright light outside is strong. She is profoundly deaf and almost totally blind. If you approach her to speak with her, you will need to identify yourself, because she can’t recognize you with little remaining vision. You will need to speak with her using sign language, and she will need to rest her hand on yours as you sign. Probably the first thing you will notice about this is that her touch is feather-light on your hand. She follows your hand effortlessly, gracefully.

Language increases a person’s ability to have more complex dialogues.

When you speak with her, she pays close attention. You can tell because she is not easily distracted, and because she asks you a lot of questions that show she has been listening well. She is also likely to surprise you by asking questions days later about something that you told her last week; maybe you told her that a friend of yours was visiting you, and she asks you whether your friend is still there. Perhaps she inquires about the meeting she knows you attended yesterday. Something about her attention expresses genuine concern. (Is it her grace of movement, the quality of her touch, or something about the way she strains to see what she can of your expression? Maybe it’s all of these.)

Her sign language is careful, using mostly English structure and simple complete sentences. She uses few complex sentences and not many compound ones. She is proud of her language and works hard at it. She asks for work sometimes in school if she feels that she is not learning enough.

Her reading is labored. She cannot read anything except the darkest large print. Even when she reads that, she must have ideal lighting, and she holds the page within an inch of her nose. At this distance she can only see one word at a time, sometimes not even that, if the word is long. So her reading is very slow. Comprehension is difficult for Julia, because it is hard for her to remember the beginning of a sentence by the time she has reached the end, especially if it is a long sentence. Over the years, several of her teachers have experimented with trying to teach her braille reading. She does not take to it enthusiastically, so she has not made enough progress to make it worth the effort that it takes. If you ask her teacher this year, when she is 15, she will tell you that she does not expect that Julia will ever be able to read adult large print material easily, or get much enjoyment from it. Right now, there are just too many things she does not understand. Not only is her reading slow, but she asks questions about many, many words. There is so much vocabulary that she has never been exposed to, so much life experience that she has not had (never having seen television or movies, or listened to the radio), and she is so curious that her reading lessons often run into long discussions before she is done with a single paragraph.

Julia enjoys these lessons, though. She is earnest. She also enjoys socializing with her classmates, and constantly asks them questions about what is going on that she can’t see. She likes to gossip, too, and talks with her friends about other teenagers, about teachers and former teachers. She has one really close friend, who is deafblind like herself (but who has a good deal more vision), and the two of them can often be found together after school talking, or looking at a magazine (the girl with more vision telling Julia about the pictures). ❦

Reading and writing allows access to information that does not depend on the physical presence of a person for its exchange.

Meet Mary

Mary, 14 years old, is petite with a pixie haircut. She has a large expressive mouth. Her smile and her pout are equally powerful. She moves along slowly because cerebral palsy has affected all of her limbs. She is not yet strong enough to walk long distances. Her mother bought her a bright red stroller so Mary can accompany her when she goes jogging or out for a walk. When she walks, Mary shuffles along with her knees slightly bent and her feet wide apart. As she walks, her head is down. (Is she watching her feet?) She can easily find her way around her foster home where she has lived for the past four years. The kitchen is her favorite place by far!

At home she enjoys turn-taking hand games with her foster mother, her sister or her sitter. She likes spending time in her own corner of the living room, in a small house made of PVC piping (her favorite things are pole shaped). It has a red pillow on the floor and many of her favorite things hanging inside (Christmas lights, glitter, tubes, etc.). She especially enjoys it when her sister joins her in the playhouse so Mary can show her all the colorful things she has. Inside is a toy box filled with brightly colored plastic chain links, her hula hoop (which she likes to look through upside down) and her plastic tennis racket. (She enjoys looking through the mesh pattern of the tennis racket, especially when she is riding in the car and looking out the window.) She also has many favorite Mickey Mouse dolls, which undoubtedly remind her of her regular visits to Disney World.

Her mother has an object communication board at home that has a toothbrush for getting ready for school and getting ready for bed, an empty toilet paper roll for going to the toilet, a bowl (just like the one she uses to eat with) for mealtime, a cup for drinks (outside of mealtime), a small teddy bear for bedtime, and a piece of a seatbelt buckle for going in the car. When objects are given to her, she will carry them to the area where she uses them. She doesn’t yet connect consistently with the toilet symbol or the bear.

Children who are deafblind should be encouraged to learn to communicate about those topics in which they are interested. (Laser Challenge by Heather Smith, age 18.)

Once in a while Mary will take an object from her board, which hangs at her eye level in the kitchen, and go to the area of her house where the activity happens. Other times, she will just go to that area without picking up the object. Sometimes, instead of using the object from her board, Mary will just go to the dish shelf and get her bowl and cup and bring it to the table. At these times, her mother makes a special effort to give Mary what she has asked for.

Mary now understands approximately 10 simple signs. For example, when her mother signs eat, Mary will walk to the table and sit in her chair. She has difficulty making signs because her cerebral palsy affects her ability to use her hands well. At school she is beginning to use a gesture to indicate that she has to go to the bathroom. She also has very cleverly figured out that she can use this gesture to get out of an activity that she doesn’t like.

Mary attends a collaborative classroom near her home for children with multiple disabilities. She is very comfortable with the routine in the classroom and follows along when other children get up and push their chairs from activity to activity. She has favorite friends whom she likes to sit next to and she smiles when they are beside her. She especially seems to like one boy from her vocational class who enjoys watching out for Mary and helping her whenever he can. When she is putting her coat on, he knows that her cerebral palsy makes this a difficult task, so he is always there to hold her sleeve for her.

For several years, people have known that Mary has a profound hearing loss, but she has only recently been recognized as having a vision loss as well (people have attributed her stumbling only to her cerebral palsy and never considered that she could not see clearly). She finally received a thorough low vision exam at a clinic that specializes in working with children who have multiple disabilities. When she wears her new glasses, she holds her head up much more often. ❦

Individuals who can see and hear deserve the privilege of learning about the life experiences of people who are deafblind.

It is important to keep in mind as you read that the children whom you met in these stories, and the others whom you will meet throughout this text, are based on real people. Each one is an individual with a unique personality, who communicates in unique ways. Without knowing individuals who are deafblind, we cannot develop a true understanding of deafblindness and its challenges. Throughout this text you will see illustrations of how essential it is to follow the lead of each particular child in helping him or her to develop communication skills. You will find that there is no single method that works for all children. Although methods must vary according to the individual, the way we think about these people must embrace what they have in common. Each one deserves our respect. Each one is worth making the effort to understand.

In the next chapter, to increase our understanding, we will define the population and discuss what characteristics are shared by people who are deafblind. Finally, we will show specific ways these sensory losses affect a person’s ability to communicate.

Most commonly it is the hands that take over the function of the eyes and ears for the person who is deafblind.

Additional Readings and Resources

Chen, D. (1994). Early social interactions. ReSources. San Francisco, CA: San Francisco State University.

Goetz, L., Guess, D., & Stremel-Campbell, K. (Eds.). (1988). Innovative program design for individuals with dual sensory impairments. Baltimore, MD: Paul H. Brookes.

Schachter, P., & Chen, D. (1995). Making the most of early communication. [Video and discussion guide]. Northridge, CA: California State University.

Wood, B. (1976). Children and communication: Verbal and non-verbal language development. Englewood Cliffs, NJ: Prentice-Hall.

CHAPTER 2

Understanding Deafblindness

Barbara Miles and Marianne Riggio

In order to help a person who is deafblind communicate to the best of his or her ability, we need to understand deafblindness and how it affects communication. First, what exactly is deafblindness, and who is a deafblind person? One might initially say, with a lot of common sense, that a person who is deafblind is someone who can neither see nor hear. However, as anyone who has encountered either deaf or blind persons knows, there are degrees of deafness and degrees of blindness. There are people who have more or less severe vision and/or hearing impairments and different kinds of hearing and vision losses, and there are many kinds of vision and hearing impairments. So, the question then becomes the following: What degree and kind of hearing and vision impairments, in what combination, constitute what we will term deafblindness?

In this chapter, we will look at how deafblindness is defined, explore the diversity within the population of people whom we call deafblind, and explore the impact that this disability has on a person. Most importantly, we want to look at the unique nature of deafblindness as a disability and the effect it has on the individual’s ability to communicate.

Defining the Population

For our purposes, and for legal purposes, too, the definition of deafblindness is primarily an educational one. Here is the definition of deafblindness that appears in U.S. Federal law governing special education (Individuals with Disabilities Education Act [IDEA]):

The term, children with deaf-blindness, means children and youth having auditory and visual impairments, the combination of which creates such severe communication and other developmental and learning needs that they cannot be appropriately educated without special education and related services, beyond those that would be provided solely for children with hearing impairments, visual impairments, or severe disabilities, to address their educational needs due to these concurrent disabilities. (PL101-476, 20 USC, Chapter 33, Section 1422[2])

So, a person who is deafblind is one who cannot simply be thought of as a blind person with an additional disability (and therefore able to function without help in an environment geared toward helping people who are blind). A person who is deafblind also cannot simply be thought of as a person who is deaf and has an additional disability, but could easily be accommodated in a school program for children who are deaf. Even putting persons who are deafblind into the category of severely or multiply disabled will not, by itself, do justice to the nature of their disabilities and their needs. Why? That is a question that we hope to address throughout this chapter. We want to look at the unique nature of deafblindness as a disability and the effect it has upon an individual’s ability to communicate.

The current population of infants, children and adults who are deafblind is very diverse, although they all have common challenges caused by this disability.

It is important to note here that throughout this book we will use the term deafblindness as a single word. In 1991, the International Association for the Education of the Deafblind (now known as Deafblind International) resolved to adopt this spelling rather than use the hyphenated term deaf-blindness to define the population of infants, children and adults we are talking about here. Although this change may not seem so significant, it demonstrates that this is a unique disability, and not the sum total of a vision and a hearing loss.

We must also take note of the fact that the above U.S. definition of deafblindness is an extremely broad one. It includes, for example, the range of children and young adults described in these brief case descriptions:

A three-year-old boy who is totally blind has a moderate-severe hearing loss, apparently normal motor and intellectual abilities, is just beginning to walk on his own, but has not yet learned any expressive language.

A six-year-old with congenital rubella syndrome who is profoundly deaf, partially sighted, and has behavior disorders attributed to an attention deficit disorder. Intelligence estimates are that she is severely developmentally delayed.

A 16-year-old girl with profound deafness, visual impairment, and severe cerebral palsy affecting all four limbs. Her intelligence cannot be accurately assessed because of lack of motoric functioning and absence of any consistent accessible language input during the course of her life. She has no apparent receptive or expressive language skills.

A two-year-old girl who is medically fragile, born prematurely and suffering from prenatal brain hemorrhages, with profound deafness and total blindness, now cared for in a pediatric nursing home.

A 20-year-old man who is congenitally deaf and adventitiously blind, with above average intelligence; presently educated for a half-day in a special setting for youth who are deafblind and for a second half-day in a mainstream situation in a boys’ preparatory school where he attends classes with the help of a sign language interpreter. He plans to attend college.

These brief descriptions are a small sampling of the kinds of individuals who might rightfully be included in the category of those with deafblindness. From a sensory standpoint, the disability of deafblindness can be broadly divided into four categories:

Those who are totally deaf and totally blind

Those who are totally deaf and visually impaired

Those who are hard of hearing and totally blind

Those who have some use of residual hearing and vision

To further understand the individual with deafblindness, we must consider age of onset; any correction (i.e., surgery, lenses, hearing aids etc.); the extent of additional physical and cognitive disabilities; and additional health impairments. These are all factors that will affect the way we think about a child who is deafblind and that will help determine specific strategies we should use for instruction. Whatever specific sensory impairments and additional disabilities a child has, each one who is deafblind will require education by a teacher who has an appreciation of this unique disability. She can then build a relationship with the individual child that will maximize that individual’s connection with other people and situations in the environment.

A Changing Population of Children

The population of children with deafblindness has widened considerably during recent years. In the United States, education of children who are deafblind began in earnest with the education of Laura Bridgman at Perkins School for the Blind in 1837. Early programs for children who are deafblind were academically based and were usually associated with schools for the blind. They tended to serve children whose sole disability was deafblindness and who lost their sight or hearing after birth, rather than those who were born with this disability. The birth of about 5,000 children who were deafblind due to the rubella epidemic of 1964-1965 changed the nature of the education of children who are deafblind.

Laura Bridgman and Dr. Samuel Gridley Howe.

In 1968, the Federal government funded 10 regional centers for deafblind services around the United States. They were established to develop model programs and provide training to meet the needs of these children who were born with congenital rubella syndrome. This population had, relative to the current population of children, a defined set of medical characteristics (e.g., heart conditions, glaucoma, cataracts, sensory neural hearing losses). Although there was variation among individual children, there were many commonalities, especially regarding educational approaches that were effective.

The widening of the identified deafblind population since 1965 has occurred principally for two reasons. Advances in medical technology have resulted in saving the lives of children born prematurely and/or with multiple congenital anomalies; these children might, before this era, have died in infancy. Also, through improved medical diagnostics and advancements in the study of genetics, we are making strides in identifying children with low-prevalence genetic disorders. This means that many children are being served who previously would not have been identified as having vision and hearing impairments. Moreover, since there are now legislated mandates to serve all children with disabilities, there has been more effort to identify such children and to provide high quality educational services.

Why a Categorical Definition?

Given that children and young adults who have combined vision and hearing losses have a wide range of needs, one might well ask, Why is it useful to think of all under the one category of deafblindness? Our experience, from our many years of teaching the whole range of children included in this educational term deafblindness is that it is, in fact, a very useful category for a number of reasons.

Communication: The Central Priority

When we define a child’s disability as deafblindness, thereby placing the primary emphasis upon his sensory impairments, we then establish communication as the central educational priority. This is so because sight and hearing are the primary avenues of communication. We explained in the first chapter why we consider communication skills to be crucial in achieving the optimal quality