The National Information Clearinghouse On Children Who Are Deaf-Blind Helen Keller National Center Hilton/Perkins Program Perkins School for the Blind Teaching Research Institute Revised October 2008 Overview on Deaf-Blindness By Barbara Miles, M.Ed. What Is Deaf-Blindness? Who Is Deaf-Blind, and What are the Causes of Deaf-Blindness? It may seem that deaf-blindness refers to a total in­ ability to see or hear. However, in reality deaf-blindness is a condition in which the combi­ As far as it has been possible to count them, there nation of hearing and visual losses in children are over 10,000 children (ages birth to 22 years) in cause "such severe communication and other de­ the United States who have been classified as velopmental and educational needs that they can­ deaf-blind (NCDB, 2008). It has been estimated not be accommodated in special education that the adult deaf-blind population numbers 35­ programs solely for children with deafness or chil­ 40,000 (Watson, 1993). The causes of deaf- dren with blindness" ( 34 CFR 300.8 ( c ) ( 2 ), 2006) blindness are many. Below is a list of many of the or multiple disabilities. Children who are called possible etiologies of deaf-blindness. deaf-blind are singled out educationally because Major Causes of Deaf-Blindness impairments of sight and hearing require thought­ ful and unique educational approaches in order to ensure that children with this disability have the Syndromes opportunity to reach their full potential. ♦ Down ♦ Trisomy 13 A person who is deaf-blind has a unique experi­ ♦ Usher ence of the world. For people who can see and hear, the world extends outward as far as his or her eyes and ears can reach. For the young child who is Multiple Congenital Anomalies deaf-blind, the world is initially much narrower. If ♦ CHARGE Association ♦ Fetal alcohol syn­ the child is profoundly deaf and totally blind, his drome or her experience of the world extends only as far as the fingertips can reach. Such children are effec­ ♦ Hydrocephaly ♦ Maternal drug abuse tively alone if no one is touching them. Their con­ ♦ Microcephaly cepts of the world depend upon what or whom they have had the opportunity to physically con­ tact. Prematurity If a child who is deaf-blind has some usable vision Congenital Prenatal Dysfunction and/or hearing, as many do, her or his world will ♦ ♦ be enlarged. Many children called deaf-blind have AIDS Herpes enough vision to be able to move about in their en­ ♦ Rubella ♦ Syphilis vironments, recognize familiar people, see sign language at close distances, and per haps read large ♦ Toxoplasmosis print. Others have sufficient hearing to recognize familiar sounds, understand some speech, or de­ Post-natal Causes velop speech themselves. The range of sensory im­ ♦ Asphyxia ♦ Encephalitis pairments included in the term "deaf-blindness" is great. ♦ Head injury/trauma ♦ Meningitis ♦ Stroke Adapted from Etiologies and Characteristics of Deaf- Blindness Heller & Kennedy,(1994), p. viii, Table 1. TTY (800) 854-7013 DB-LINK Voice (800) 438-9376 Some people are deaf-blind from birth. Others may A person who is deaf-blind also faces, further, the be born deaf or hard-of-hearing and become blind challenge of learning to move about in the world as or visually impaired later in life; or the reverse may freely and independently as possible. Adult indi­ be the case. viduals also must eventually find adult living and work situations that allow them to use their talents Still others may be adventitiously deaf-blind — that and abilities in the best way possible. Many adults is, they are born with both sight and hearing but who are deaf-blind lead independent or semi­ lose some or all of these senses as a result of acci­ independent lives and have productive work and dent or illness. enjoyable social lives. The achievement of such Deaf-blindness is often accompanied by additional success depends in large part upon the education disabilities. Causes such as maternal rubella can they have received since childhood, and particu­ also affect the heart and the brain. Some genetic larly upon the communication with others that syndromes or brain injuries that cause deaf- they have been able to develop. blindness may also cause cognitive disabilities and/or physical disabilities. What are the Particular What are the Challenges Facing Challenges Facing the Family, a Person who is Deaf-Blind? Teachers and Caregivers of a Person who is Deaf-Blind? A person who is deaf-blind must somehow make sense of the world using the limited information Communication available to him or her. If the person’s sensory dis­ abilities are great, and if people in the environment The disability of deaf-blindness presents unique have not made an effort to order the world for him challenges to families, teachers, and caregivers, or her in a way that makes it easier to understand, who must make sure that the person who is deaf- this challenge may be overwhelming. Behavioral blind has access to the world beyond the limited and emotional difficulties often accompany deaf- reach of his or her eyes, ears, and fingertips. The blindness and are the natural outcomes of the people in the environment of children or adults child’s or adult’s inability to understand and com­ who are deaf-blind must seek to include municate. them — moment-by-moment — in the flow of life and in the physical environments that surround People who can see and hear often take for granted them. If they do not, the child will be isolated and the information that those senses provide. Events will not have the opportunity to grow and to learn. such as the approach of another person, an upcom­ If they do, the child will be afforded the opportu­ ing meal, the decision to go out, a change in routine nity to develop to his or her fullest potential. are all signaled by sights and sounds that allow a person to prepare for them. The child or adult who The most important challenge for parents, caregiv­ misses these cues because of limited sight and/or ers, and teachers is to communicate meaningfully hearing may come to experience the world as an with the child who is deaf-blind. Continual good unpredictable, and possibly threatening, place. To communication will help foster his or her healthy a great extent, persons who are deaf-blind must de­ development. Communication involves much pend upon the good will and sensitivity of those more than mere language. Good communication around them to make their world safe and under­ can best be thought of as conversation. Conversa­ standable. tions employ body language and gestures, as well as both signed and spoken words. A conversation The challenge of learning to communicate is per­ with a child who is deaf-blind can begin with a haps the greatest one that children who are deaf- partner who simply notices what the child is pay­ blind face. It is also the greatest opportunity, since ing attention to at the moment and finds a way to communication and language hold the power to let the child know that his or her in terest is shared. make their thoughts, needs, and desires known. The ability to use words can also open up worlds This shared interest, once established, can become beyond the reach of their fingertips through the a topic around which a conversation can be built. use of interpreters, books, and an ever-increasing Mutual conversational topics are typically estab­ array of electronic communication devices. In or­ lished between a parent and a sighted or hearing der to learn language, children who are deaf- blind child by making eye contact and by gestures such must depend upon others to make language acces­ as pointing or nodding, or by exchanges of sounds sible to them. Given that accessibility, children and facial expressions. Lacking significant who are deaf-blind face the challenges of engaging amounts of sight and hearing, children who are in interactions to the best of their abilities and of deaf-blind will often need touch in order for them availing themselves of the language opportunities to be sure that their partner shares their focus of at­ provided for them. tention. The parent or teacher may, for example, touch an interesting object along with the child in a nondirective way. Or, the mother may imitate a Page 2 Overview on Deaf-Blindness Voice (800) 438-9376 DB-LINK TTY (800) 854-7013 child’s movements, allowing the child tactual ac­ ♦ Signed English ♦ Pidgin Signed English cess to that imitation, if necessary. (This is the tac­ tual equivalent of the actions of a mother who ♦ braille writing and ♦ Tadoma method of instinctively imitates her child’s babbling sounds.) reading speech reading Establishing a mutual interest like this will open ♦ American Sign ♦ large print writing up the possibility for conversational interaction. Language and reading Teachers, parents, siblings, and peers can continue conversations with children who are deaf-blind by ♦ lip-reading speech learning to pause after each turn in the interaction Along with nonverbal and verbal conversations, a to allow time for response. These children fre­ child who is deaf-blind needs a reliable routine of quently have very slow response times. Respecting meaningful activities, and some way or ways that the child’s own timing is crucial to establishing this routine can be communicated to her or him. successful interactions. Pausing long enough to al­ Touch cues, gestures, and use of object symbols are low the child to take another turn in the interac­ some typical ways in which to let a child who is tion, then responding to that turn, pausing again, deaf-blind know what is about to happen to her or and so on — this back-and-forth exchange becomes him.