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Versión Español de este artículo (Spanish Version)
By Deborah Chen, Ph.D. Professor, California State University, Northridge
Reprinted with permission from reSources, Volume 10, Number 5, Communication Issue, Summer 1999, Published by California Deaf-Blind Services
All infants communicate through crying, fussing, smiling, body movements, and other nonverbal behaviors. With repeated interactions, their parents, families, and other significant caregivers interpret the meaning of these signals and respond accordingly. Through these early exchanges, infants discover that their behaviors have a powerful effect on their caregivers and develop more efficient ways to communicate - through gestures and words. However, when infants have a visual impairment and hearing loss in additional to other disabilities, the communication process does not develop naturally. Their early communicative behaviors may be subtle or unusual and therefore difficult to identify and interpret. For example, an infant (who is totally blind and hard of hearing) may become quiet when her mother speaks to her. This passivity may be misinterpreted as disinterest rather than attentiveness. Another infant (who has cerebral palsy and is deaf) may grimace his body when his father picks him up. These behaviors may be misinterpreted as rejection rather than excitement.
At the same time, our usual responses, i.e., by talking to hearing infants or by signing to deaf infants, may not be understood or even perceived by infants with sensory impairments and multiple disabilities. Communication with these infants requires careful planning, consistent attention, and specific procedures. The purpose of this article is to discuss selected strategies that families and service providers can use for communicating with infants (birth to 36 months) who are not yet using words and who have significant and multiple disabilities.
Because the meaning of an infant's early communication behaviors is tied to context, we must first identify how and why an infant communicates during familiar activities. These observations provide information on an infant's current level of communication and ways to support interactions.
Next, we should find out about the family's typical activities and communication practices. This way, strategies will be tailored to fit the family's lifestyle and will be more useful to the family.
Taking time to discuss these questions is important for all families and absolutely essential when service providers and families have different cultural and linguistic backgrounds. Otherwise, a service provider's suggestions for supporting the infant's communication may conflict with family practices. For example, an infant may be confused if an English-speaking service provider says "good boy" to praise him while his Spanish-speaking mother says `bravo." Explanations of sign hand shapes based on English letters, e.g., "S hands" for the sign SHOE, will not make sense to non- English speaking families who do not know the manual alphabet and is not immediately useful if the infant does not wear shoes. Only through careful observations of the infant and thoughtful discussions with families, can service providers suggest communication strategies that are most appropriate for a particular infant and respectful of the family's culture.
We must differentiate between the methods for communicating with an infant (input) and the ways in which an infant is most likely to communicate (output). Input and output communication methods must be tailored to meet the individual learning needs of each infant. For example, a mother may ask an infant "want to swing?" by using an object cue (a blanket) for input, while this infant indicates "yes' by wiggling her body (output).
Infants with multiple disabilities must receive comprehensive audiological and ophthalmological evaluations since they are more likely to have vision and hearing problems than infants without disabilities. An infant's visual impairment is usually identified before a hearing problem because it is more obvious. If an infant is identified as having a visual impairment and hearing loss, then every effort must be made to determine whether the infant would benefit from corrective lenses and hearing aids.
Anticipatory cues are specific sensory prompts to help prepare the infant for an upcoming activity. They include: tactile cues (e.g., "let’s put your sock on" may be communicated by touching the infant’s foot which is a touch cue) or by having the infant touch the sock (object cue); auditory cues (e.g., tapping the spoon against the bowl to indicate "let's eat"); kinesthetic cues (e.g., rocking the infant in your arms before placing her in the hammock); olfactory cues (e.g., having the baby take a whiff of the soap before bathing him); or visual cues (e.g., wiggling your fingers in the infant's visual field before picking him up). Do not use cues that elicit a negative reaction or are difficult for the infant to perceive. For example, for infants who have had many pricks on their feet from blood tests, touching the foot would be an aversive tactile cue for "let's put your socks on." Other infants may be very sensitive to certain scents and react negatively to olfactory cues. Cues should be selected carefully for each infant, made in a consistent and precise manner, and have a clear connection with what they represent. This way the infant can develop an understanding of their meaning. For example, an infant will be confused if different tactile cues are used for the same message (e.g., touching the lips, or the chin, or the cheek to indicate "let's eat") or if different tactile cues on the face have different messages (e.g., touching the lips means "let's eat", touching the chin means "open up for your toothbrush.").
There is no research on the use of cues with infants to guide how they should be introduced. Cues should be individualized for each infant and dependent on the specific activity. However, a helpful principle is to begin with a cue that will be easily understood by the infant, that is clearly related to the activity, and that is presented immediately before the activity begins. For example, initially, it is probably easier for an infant to understand "get ready for your bath" through a tactile cue (putting his hand in the water just before being put in the tub) than being given a whiff of bathsoap (olfactory cue). Begin with just a few cues that are very different from each other, and that represent different activities, and are therefore easy for the infant to discriminate and to discover what they mean. For example, use a tactile cue for bathtime (putting the infant's hand in the water), a touch cue for diaper change (tug on the infant's diaper), and an object cue for playtime (quilt for the blanket swing).
A manual sign is a symbol, a word, or a unit of language that represents something. For example, the sign MAMA represents mother no matter the situation. A cue is a prompt that is individualized for each child, is dependent on the specific activity or context, and is used to encourage a specific behavior. For example, tapping a child on the chin may be a prompt for "open up" if the caregiver wants to brush the child's teeth; or for "take a bite" during meals; or "close your mouth" to prevent drooling.
Many infants with multiple disabilities benefit from key word signs which are selected signs adapted for the infant's learning needs. Using key word signs is not the same as using the simultaneous method (spoken English together with a sign system based on English) or using American Sign Language (ASL) which has its own grammar and visual-spatial rules and is a different language than English. Initially, a key word sign is really a prompt or cue to engage the infant's attention and to build an understanding of the meaning of a word and what it represents. For example, the sign EAT made either by the adult touching the infant's lips with a flat 0 handshape or by assisting the infant to touch his own lips is really a touch cue or gesture rather than a sign. When key word signs are used with infants who have low vision, the infant's visual needs must be considered. Signs should be made so the infant can see them, that is, within the infant's visual field and at an optimal viewing distance; the rate of sign production and size of hand movements should be modified to enable the infant to see the sign; and the signer's hands should be clearly visible in contrast to his or her clothing.
Build on the infant’s interests and strengths. Infants are likely to attend to objects, activities, and people they like and are more likely to request these favorite things. For example, an infant who loves movement will be motivated to ask for "more" of a bouncing game. This favorite activity may be used in an interrupted routine strategy to elicit communication output, as shown below. Selected methods for encouraging the infant’s expressive communication should be based on the infant’s abilities. For example, infants who can control their hand movements are more likely to use some signs expressively than infants who have motor problems. An infant is more likely to make a choice between a favorite object and a disliked object than between two objects of equal appeal.
Repeat this prompting procedure two more times so that the infant has three direct instruction experiences. Then repeat from Step 3: interrupt the activity and wait quietly for the infant’s response.
Provide time and repetition. Very young children without disabilities need to hear a word used in context about 200 times before they use it. Infants with multiple disabilities will need even more repeated experiences to understand the meaning of a cue or word used in everyday activities. This significant need for consistency and repetition highlights the importance of making communication an essential part of every learning activity and daily routine. Not only the infants, but everyone involved with them - family members and service providers - should all be learning how to communicate.
Selected resources for supporting early communication with infants who have severe and multiple disabilities
Bricker, D., Pretti-Frontzak, & McComas, N. (1998). An activity-based approach to early intervention (2nd ed.). Available from Paul H. Brookes Publishing, Baltimore, MD, <www.brookespublishing.com>, (800) 638-3775. Provides a process and format for infusing early intervention objectives within an infant’s daily routine.
Casey-Harvey, D.G. (1995). Early communication games. Routine-based play for the first two years. Available from Communication/Therapy Skill Builders, San Antonio, TX, <www.hbtpc.com>, (800) 211-8378. Play activities which support early communication development of infants.
Chen, D. (Ed.) (in press). Essential elements in early intervention: Visual impairments and multiple disabilities. Available from AFB Press, New York, <www.afb.org>, (800) 232-3044. Chapters on a variety of topics including early intervention purposes and principles, meeting the intervention needs of infants with multiple disabilities, caregiver-infant interaction, early communication, functional vision assessment and interventions, understanding hearing loss and interventions, clinical vision assessments, audiological evaluations, creating meaningful interventions within daily routines, and adaptations for including preschoolers with multiple disabilities in typical settings.
Chen, D. (1997). What can baby hear? Auditory tests and interventions for infants with multiple disabilities [closed captioned video & booklet]. Available from Paul H. Brookes Publishing, Baltimore, MD, <www.brookespublishing.com>, 9800) 638-3775. Video examples of audiological tests, functional hearing screenings, interviews with parents and early interventionists, and classroom activities with infants.
Chen, D. (1998). What can baby see? Vision tests and interventions for infants with multiple disabilities [closed captioned video & booklet]. Available from AFB Press, New York, <www.afb.org>, (800) 232-3044. Video examples of clinical vision tests, interviews with parents and an early interventionist, and related activities with infants.
Chen, D., Friedman, C.T., & Calvello, G. (1990). Parents and visually impaired infants. Available from American Printing House for the Blind, Louisville, KY, <www.aph.org>, (800) 223-1839. Collection of protocols for gathering information and developing intervention activities for infants with visual impairments based on observations and caregiver interviews, for using videotaped data collection, tips for conducting home visits, and for developing home-based social routines.
Chen, D., Klein, D.M., & Haney, M. (in review). Project PLAI. Promoting learning through active interaction [closed captioned video]. For information contact email@example.com or call (818) 677-4604. Video examples of a five step process for developing communication with infants with multiple disabilities including visual impairment and hearing loss.
Chen, D, & Schachter, P.H. (1997). Making the most of early communication. Strategies for supporting communication with infants, toddlers, and preschoolers whose multiple disabilities include vision and hearing loss [closed captioned video & booklet]. Available from AFB Press, New York, <http://www.afb.org>, (800) 232-3044. Video examples of early caregiver-infant games, simulations of visual impairment and hearing loss, strategies to promote communication with infants and preschoolers, interviews with parents and teachers, and activities in an oral communication preschool class, and in total communication classrooms for toddlers and preschoolers.
Freeman, P. (1985). The deaf-blind baby: A programme of care. Available from William Heinemann Medical Books, 23 Bedford Square, London, WCIB 3NN, England. A comprehensive guide of strategies to support the early development of infants who are deaf-blind.
Gleason, D. (1997). Early interactions with children who are deaf-blind. Available from DB-LINK, The National Information Clearinghouse on Children who are Deaf- Blind, <www.tr.wou.edu/dblink>, (800) 438-9376. Booklet on early communication strategies.
Harrell, L. (1984). Touch the baby. Blind and visually impaired children as patients - helping them respond to care. Available from AFB Press, New York, <www.afb.org>, (800) 232-3044. Booklet that discusses touch cues and signals to help prepare an infant for uncomfortable procedures in a doctor’s office or hospital.
Klein, M.D., Chen, D., & Haney, M. (in review). Project PLAI. Promoting learning through active interaction. A curriculum facilitating caregiver interactions with infants who have multiple disabilities. For information contact firstname.lastname@example.org or call (818) 677-4604. A curriculum composed of 5 modules for developing early communication with infants with multiple disabilities including visual impairment and hearing loss.
Lueck, A.H., Chen, D., & Kekelis, L. (1997). Developmental guidelines for infants with visual impairment. A manual for early intervention. Available from American Printing House for the Blind, Louisville, KY, <http://www.aph.org>, (800) 223-1839. A review of related developmental research with implications for early intervention and suggestions for activities in the following areas of development: social-emotional, communication, cognitive, fine motor, gross motor, and functional vision.
Lynch, E.W., & Hanson, M.J. (1998). Developing cross-cultural competence (2nd ed.). Available from Paul H. Brookes Publishing, Baltimore, MD, <www.brookespublishing.com>, (800) 638-3775. A comprehensive and invaluable source. Provides a review of the literature related to cultural diversity, child-rearing practices, cultural perspectives on disability, and healing practices. Identifies the process of developing cultural-competence with particular implications for early interventionists. Specific chapters discuss working with families of Anglo-European, Native-American, African-American, Latino, Asian, Pilipino, Native Hawaiian, and Middle Eastern backgrounds.
Morgan, E.C. (Ed.). (1994). Resources for family centered intervention for infants, toddlers and preschoolers who are visually impaired. VIISA Project (2nd.). Available from Hope, Inc. Logan, UT, <www.hopepubl.com>, (435) 752-9533. A comprehensive two volume guide for addressing the intervention needs of young children with visual impairments. Topics include: working with families, support services, early intervention programs, transition, preschool programs, and curriculum units (communication, language, social-emotional development, child-care and self-care, orientation and mobility, learning through the senses, and cognitive development).
Rowland, C. (1996). Communication matrix. A communication skill assessment for individuals at the earliest stages of communication development. Available from Oregon Health Sciences University, Center on Self- Determination, 3608 SE Powell Blvd, Portland, OR 97202. An instrument which identifies the range of communication development from pre-intentional behavior and intentional behavior to the use of abstract symbols and language.
Watkins, S. (1989). A model of home intervention for infant, toddler, and preschool aged multihandicapped sensory impaired children. The INSITE model. Available from Hope, Inc. Logan, UT, <www.hopepubl.com>, (435) 752- 9533. A comprehensive two volume resource which provides practical information for the role of parent advisors (early interventionists) in working with families and strategies for enhancing early communication, hearing, vision, cognition, motor, and social-emotional development.
This document is supported in whole or in part by the U.S. Department of Education, Office of Special Education Programs, (Cooperative Agreement No. H326C030017). However, the opinions expressed herein do not necessarily reflect the policy or position of the U.S. Department of Education, Office of Special Education Programs, and no official endorsement by the Department should be inferred. Note: there are no copyright restrictions on this document; however, please credit the source and support of federal funds when copying all or part of this material.
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