Hearing parents of a deaf infant face emotional hurdles and complex choices about how to communicate with and educate their child. The counseling you provide can set the stage for success or failure. First of two parts.
DR. KING is director, deaf education, Utah State University, Logan, Utah. He has nothing to disclose in regard to affiliations with, or financial interests in, any organization that may have an interest in any part of this article.
The initial impression of a person or situation is often the one on which all subsequent expectations are based. Such is the case with the relationship between the parents of a deaf child and the pediatrician. Advice offered to the parents is often taken as irrefutable fact and can lead to either success or failure for the child, emotionally, socially, and linguistically. Counseling parents of a deaf child therefore carries with it a great responsibility to be well-informed about the child's unique educational, social, emotional, and linguistic needs.
This review provides background concerning these needs, and offers suggestions to help you counsel parents effectively. The first part considers how hearing parents may respond to the prospect of raising a deaf child, the emotional hurdles they face, what methods are used to teach and communicate with deaf children, and what educational placement options are available. The second part discusses differing views of deafness as pathology or sociocultural difference, the impact of cochlear implants, and your role in early intervention and parent counseling.
In more than 90% of families with a deaf child, the parents are hearing and usually have no knowledge of or experience with deafness.1 The birth of a deaf child changes their world. Parents often experience the gamut of possible responses-from overprotection to rejection. They may feel that they have produced a child who is genetically inferior and that they need to work arduously as the child's advocate to mitigate the perceived impairment. They may slip easily into the blame game: blaming themselves, one another, and God.
Hearing parents often feel compelled to begin a process of professionally guided identity development for their child that might be termed "the making of a hearing-impaired person." This process involves reinforcement by parents and professionals of the societal deficit model that labels the child "disabled." Otologists determine the origin of the hearing loss and suggest remedies; audiologists quantify and characterize the loss in detail; speech therapists develop oral communication; and special education teachers manage the child with a disability.2
Hearing parents and professionals are often unaware that Deaf parents rear their deaf children successfully without many of these services (I use the upper-case "D" when referring to the culturally Deaf and the lower-case "d" when referring to the audiologically deaf). In fact, psychological and academic tests suggest that Deaf parents are more successful at raising their deaf children than hearing parents who rely on services extensively.3
Two possible explanations for their success are greater acceptance of the deaf child and early access to language. These two points are critical when counseling parents; they are the center around which all other counseling revolves.
Hearing parents often view their deaf child with terrible uncertainty. They do not know what to anticipate in terms of goals and expectations for their child's future, and they are uncertain about their roles and how to be effective parents in this new situation. Often, they experience guilt, confusion, and helplessness.4 At the core of the uncertainty is the issue of communication: Should American Sign Language (ASL) be used? Where does speech fit into the picture? Should a manually coded English system be the means of communication? Cued speech? Should a cochlear implant be considered? Although research findings indicate benefits for families choosing sign as a means of communication, the issue remains complex,5 and, sadly, is never satisfactorily resolved by many hearing parents.
An emotional roller coaster
The birth of a deaf child throws the entire hearing family into limbo. Initially, if hearing loss is not detected by screening at birth, parents are not aware that the child is deaf because, in the first few months of life, the baby displays sensorimotor development, babbling, and gestural behavior comparable to that of a hearing baby.2 As a result, parent-child interaction is reciprocal.
During the fourth to twelfth months of the child's life, however, the parents increasingly struggle to interpret behaviors that might be termed aberrant, even though their child's behavior, by and large, matches their developmental expectations. They may wonder, for example, why the child does not sing along during a game of patty cake, respond when his name is called, or produce his first words at 9 or 10 months of age.