The roller-coaster of experiences: becoming the parent of a deaf child

Abstract

When early testing indicates a hearing loss, parents find themselves on a rollercoaster of experiences leaving little time or space for reflection. This study is based on interviews with families in the Flemish region of Belgium, one of the earliest in the world to introduce universal neonatal screening for hearing loss. Starting from a phenomenological approach, we explore parents' accounts of their experiences in order to uncover the meanings of early parenting of a child identified with a label. Soon after birth, these parents encounter a different world in which intertwined discourses construct parenthood with a deaf child. During the process of becoming a parent, representations of deafness as impairment were omnipresent. In contrast to a medical and technological perspective that insists on the need to intervene as fast as possible, it is argued that the private and social implications of rapid intervention require explicit consideration.

Representations of disability and normality in rehabilitation technology promotional materials

“…Further, messages such as ''help your child hear now'' (HAT-A brochure), ''empower your child'' (HAT-A brochure), and ''no child should be left behind'' (HAT-A brochure), help shape parents' perceptions of what it means to be a ''good'' parent of a disabled child. As Bosteels et al [25] discuss in relation to parents' experiences with their child's deafness ''heroic discourse of progress and technological advances . .…”

“…For example, in the context of hearing technologies, Bosteels et al [25] assert that ''[d]ependency on (hearing) technology tends to replace or distract the attention from human care'' (p. 985). Similarly, Hidler et al [26] contend that the biggest disadvantage of robotic intervention technologies is that ''they do not have the same 'feel' as therapists do'' (p. 342).…”

‘Su guagua no escucha nada’: Ecuadorian families confronting the deafness of a child

“…With regard to crucial decisions, such as school placement or the use of sign language, professionals largely foisted their own unexamined views onto the parents they were supposedly supporting. Similarly, a recent Belgian study suggests that professional advisors generally discourage parents from critical reflection or from seeking information (Bosteels, van Hove, and Vandebroeck 2012). The importance of these studies is their demonstration that, in understanding what parents go through, and how they cope with the diagnosis of a hearing impairment, the analytic gaze must be broadened to encompass professionals, friends and family.…”

Relevance of the International Classification of Functioning, Health and Disability: Children & Youth Version in Early Hearing Detection and Intervention Programs

“…The future for their newborn child feels uncertain and unpredictable and parents express the need for timely access to understandable information and support that changes over time as their child grows. [19][20][21][22][23] These parents need to be provided with the resources and opportunities to support the positive development of their child to achieve whatever vision they have, regardless of disability and body function. 24 Families constitute the most influential microsystem (i.e., all the settings in which a child personally interacts and is influenced) of children, especially in the early years.…”