Excerpted from the Introduction of The Young-Deaf or Hard of Hearing Child: A Family-Centered Approach to Early Education
Edited by Barbara Bodner-Johnson, Ph.D., and Marilyn Sass-Lehrer, Ph.D.
©2003. Brookes Publishing. All Rights Reserved.
Parents who discover that their infant or toddler has a hearing loss are confronted with a range of possible interventions and advice on how best to raise a deaf or hard of hearing child. Professionals, parents, and adults who are deaf or hard of hearing advise parents to pursue different approaches. Their advice may take into consideration the individual characteristics of the child and family; but it is often more strongly influenced by their understandings and perspectives of what it means to be deaf.
For new parents who have no experience with people who are deaf or hard of hearing, their children's hearing loss is often viewed as devastating, shattering their dreams and expectations for their children's future. Adults who are deaf or hard of hearing often are puzzled by this reaction. For them, hearing loss may create some difficulties from time to time but mostly it is experienced as a difference that presents unique experiences and opportunities, not a disability.
Paul Ogden, the author of The Silent Garden (1996), wrote, "Deafness is not about hearing but about communication." To those who can hear, deafness is understood as a "lack" of hearing; for those who cannot hear, deafness has little to do with how much or how little one hears and has everything to do with how easy it is to communicate. The Young Deaf or Hard of Hearing Child: A Family-Centered Approach to Early Education is about early communication, language, literacy, and the academic and social opportunities for people with hearing loss. This book is not about how much or how little damage there is to the hearing mechanism or about what needs to be done to restore or rehabilitate hearing. In this book, we try to provide a perspective that is not found in many other works; that is, we present our content based on the premise that hearing loss is a communication and socio-linguistic experience that begins with the family. We invited the contributors to work on this book not only because of their shared perspective but also because of their range of knowledge and diverse experience with families and children. The wisdom of this selection of authors is in the difference in perspectives they bring based on their work with deaf and hearing families, their experience in clinical and school settings, and their expertise in promoting communication via visual and auditory/oral approaches.
Rationale for Family-Centered Focus
Early education programs for children who are deaf or hard of hearing develop needed services for children from the foundational assumption that the development of the young child can only be fully understood within a family context and that, in turn, the family interacts within a larger social system. This contextual framework—beginning with the family system and extending outward to include the immediate environments with which the child interacts—sets the stage for implementing programs and practices that establish the well-being of the individual family as a priority goal, which is integral to planning for the child. A family-centered approach is sensitive to family complexity, responds to family priorities, and supports caregiving behavior that promotes the learning and development of the child (Shonkoff & Meisels, 2000). For deaf or hard of hearing children with hearing parents, it is likely that full access to the language being used in the family is not available. Early language acquisition and communication development, therefore, as well as the development of child–family relationships are primary early intervention focus areas for these families. The deaf or hard of hearing child's ability to communicate with his or her parents or caregivers and siblings is key to developing intimate and enjoyable family relationships that benefit everyone. Furthermore, family engagement patterns support the child's ongoing social development. For example, how deaf children make and keep friends and how they develop their identity are directly influenced by the relationships experienced within their families as well as by the quality of the communication within their families.
Family-centered early education programs emphasize the families' roles as collaborators and decision makers with the early education professionals and promote the self-efficacy of the family, their individual strengths and resources, and the strengths and resources of their various communities. Collaborative, family-centered early education supports family–professional partnerships that strengthen families' abilities to nurture and enhance their children's learning, development, and well-being. Furthermore, services developed for each family derive from an interdisciplinary, team-based approach in which audiologists, social workers, medical practitioners, speech-language pathologists, and deaf consultants, for example, coordinate with early education specialists and families to develop individualized programs unique for each family.
Strengths and Challenges of Early Education
The promise of universal newborn hearing screening and early intervention has raised expectations for children who are deaf or hard of hearing. Prior to the mid-1990s, young children entering the educational system were, more than likely, already exhibiting delays in one or more areas of development. With early identification, competent professionals, and comprehensive family-centered early education, it is now realistic to expect that many children with hearing loss will experience few delays by the time they reach school age.
A hearing loss creates a difference in the way in which individuals communicate and acquire information, but hearing loss is not disabling provided there is full access to communication. The widespread use of American Sign Language and the recognition of Deaf communities reflect a sociological, cultural, and linguistic view of deafness that is in sharp contrast to a disability perspective. In addition, a wellness model of deafness has gained popularity, underscoring the recognition that individuals who are deaf or hard of hearing are competent, productive, successful, and lead fulfilling lives (National Association of the Deaf, 2000).
This book emphasizes a family-centered approach that recognizes that children's developmental opportunities lie within the context of their families and the children's early environment. Early education professionals develop relationships with families and strive to promote each family's strengths, natural caregiving roles, and competence. Family involvement is a primary goal of family-centered early education. Families with children who are deaf or hard of hearing need professionals, parents of other deaf or hard of hearing children, and adults who are deaf or hard of hearing to help them understand their children's unique abilities and needs. At the same time, families need to develop skills to communicate with their deaf or hard of hearing children, not only to promote the acquisition of language but also to ensure a sense of belonging and a place in the family.
The importance of early communication for children with hearing loss and the essential role of their parents was recognized as early as the mid-17th century when parents were urged to fingerspell to their infants (Dalgarno, 1680, cited in Moores, 2001). The first early intervention program in the United States (a "family" school established by Bartlett in New York City in 1852) incorporated many of the characteristics that are considered "innovative" today (Moores, 2001). Early intervention programs for children with disabilities did not attract public attention or resources until the mid 1960s with the establishment of Head Start and the Handicapped Children's Early Education Act (PL 90-538; Bailey & Wolery, 1992). In 1968 the Bureau of Education for the Handicapped of the U.S. Department of Education established the Handicapped Children's Early Education Program (HCEEP) to develop and evaluate models for serving young children with disabilities and their families (Bowe, 2000). Recognition of the successes of these early programs and the importance of family involvement and the home environment (Bronfenbrenner, 1975) led to the expansion of early intervention programs in the 1970s. A decade later, the Education of the Handicapped Act Amendments of 1986 (PL 99-457), in effect, assured services for preschool children with disabilities and established the framework for early intervention services.
The field of early childhood special education emerged from the contrasting perspectives of early childhood education and special education (Bruder, 1997). Early childhood education is rooted in a developmental and constructivist view of learning that emphasizes a child-centered approach in which adults are responsive to child-initiated interactions and interests (Bredekamp & Copple, 1997). Special education tends toward a functional/behavioral perspective that emphasizes more direct instruction and the acquisition of functional skills that are carefully designed by adults. These paradigms for learning (developmental and behavioral) and their respective practices (responsive, child-directed; directive, teacher-centered) represent the continuum of teaching and learning contexts evident in early education programs (Bailey, 1997). Early education for children who are deaf or hard of hearing and their families continues to seek its place amidst these two disciplines (Sass-Lehrer, 1998; Sass-Lehrer & Bodner-Johnson, 2003).
Characteristics that make each child and family unique are significant for program planning. Children with hearing loss are very heterogeneous, differing from each other not only in how they use sight and sound to acquire language and communicate (i.e., visual abilities and extent of hearing loss vary widely), but also in rates of development and special learning characteristics and aptitudes. No two children share the same developmental profile, and many children with hearing loss have needs that may require a more functional or directive approach. Family situations also shape the nature of services provided. For example, family differences in hearing status (whether parents themselves are deaf or hard of hearing), home language, cultural perspectives, and economic situation will influence their expectations for their child and the services they choose (Meadow-Orlans & Sass-Lehrer, 1995; Meadow-Orlans, Mertens, & Sass-Lehrer, 2003). Collaboration with professionals from different disciplinary perspectives and areas of expertise are more likely to result in services that are appropriate and tailored to achieve the best outcomes for each child.
The opportunities and services available for young children with hearing loss and their families have never been greater. Not only has the widespread implementation of newborn hearing screening provided the opportunity for an early start for early intervention for the majority of infants born with a hearing loss and their families, but also, technological advances provide options for improved access to sound. At the same time, challenges exist that may deter these opportunities for some children and families. For example, almost one half of all infants referred for further testing from newborn hearing screening do not receive hearing evaluations and follow-up services (Sound Ideas Newsletter, 2003). Of those children and families who enter the early intervention system, a majority receives services from professionals who do not have preparation in education of the deaf (Stredler-Brown & Arehart, 2000). In fact, families report that many medical and health care professionals have little understanding of the cultural experiences, language, and successes of Deaf adults. And yet, strong recommendations from these professionals often lead parents to choose surgical interventions and communication approaches that may do little to advance their child's opportunities or help their child to achieve his or her potential.