Parents and Their Deaf Children: The Early Years

1. Introduction to the National Parent Project and Survey Results

Chapter 1 Introduction to the National Parent Project and Survey Results This book details the experiences of a representative group of American parents and their deaf or hard of hearing children from identification of hearing loss to the early elementary grades during the last decade of the twentieth century. The parents report their goals and expectations, the children’s achievements and troubles, their family’s satisfactions and disappointments with health and educational systems.When the children were born,in 1989 and 1990,these systems were in the throes of dramatic shifts in provisions for infants and toddlers with disabilities. Technological advances led to the expanded use of cochlear implants and earlier identification of hearing loss.The Individuals with Disabilities Education Act (IDEA),passed in 1986 and reauthorized in 1997,required that parents be included in planning educational programs for their children with disabilities and that programs be designed to meet the needs of these children and their families (Craig, 1992; Moores, 2001; Sass-Lehrer & Bodner-Johnson, 1989). However, if professionals are to provide individualized support services ,they must first identify salient characteristics of families and children so the services will fit unique circumstances. This seems a straightforward statement, but it masks a complex imperative. Deaf and hard of hearing children comprise a heterogeneous population: They come from every region and state; from farms, inner cities, and suburbs; and from every racial,ethnic,and socioeconomic group.They may be adopted or fostered, have many siblings or none, and live in large or small extended families where parents speak English or one of many other languages.Those parents may be hearing, deaf, or hard of hearing; married or single, living with a partner, divorced, or separated. The children themselves may be deaf or hard of hearing, may or may not have additional conditions, and may or may not be developing at age level.All of these characteristics (and others as well) have an impact on the kinds of services that are most 1 appropriate, on parents’ evaluations of services, and on parents’ responses to a child’s hearing loss. To date, few efforts have been made on a national level to explore the relationship of child and parent characteristics to early intervention services .This gap was one reason for the National Parent Project (NPP),which is reported in this book. A nationwide survey was conducted that was designed to reach parents of 6- and 7-year-old deaf and hard of hearing children and to gather information about their early experiences with the professionals who provided identification and intervention services.1 To gain an in-depth understanding of those experiences, the survey was followed by interviews with 80 of the parents. A growing body of research documents the positive effects of early comprehensive intervention for the social and cognitive development of children born at risk for developmental delay (Greenberg & Crnic, 1988; Hauser-Cram, Warfield, Shonkoff, & Krauss, 2001; Shonkoff, HauserCram , Krauss, & Upshur, 1992). For children who are deaf or hard of hearing, positive results of early intervention are shown for social and communicative competence, and support networks relate to positive mother-child interaction and better language development (Calderon & Greenberg, 1997; Meadow-Orlans & Steinberg, 1993; Yoshinaga-Itano, 2000). Children in responsive and supportive families demonstrate better socioemotional, communicative, and cognitive development compared to others (Meadow-Orlans, in press).A lingering question for practitioners is how best to connect with families to provide information, support, and resources to enhance parents’and caregivers’abilities to promote children’s development. Professionals also face the challenge of changing demographics of children in special education programs (Holden-Pitt & Diaz, 1998; Schein, 1996).As immigration has increased the proportion of foreign -born children in public schools, nonnative children in deafness-specific programs have increased even more rapidly (Schildroth & Hotto, 1993), perhaps because economic disadvantage places them at greater risk 2 Chapter 1 1. See Appendix A for a detailed description of the survey methodology. Appendix B includes the survey and interview instruments. for repeated middle-ear infections and poor medical care (Cohen, Fischgrund, & Redding, 1990). These demographic changes,added to legislative and technological shifts, mean that both early intervention programs and the children and families they serve are quite different from those of earlier years. Information about the composition of the population and about parents’ views of their early experiences should benefit professionals and future consumers alike. Design of the Project The NPP was conducted in three stages: (1) a national survey of parents whose 6- and 7-year-old children were enrolled...