Abstract
We begin our focus on the everyday experience of caregiving by examining the issues of caring for young children with congenital conditions or impairments from early childhood injuries. Caring for people in this life stage, especially by parents, presents distinctive challenges. We follow through the stages of separation, liminality and the notion of reconnection(s) to highlight the immediacy of the carer experiences. Our ideas about reconnection are discussed, in terms of outreach and the wider social recognition of the new role and identity.
We refer to examples of the experience of carers to reveal the practical, personal, emotional and social dimensions of their lives. Cases emphasise the need to (1) appreciate the practical supports required for caregivers, be they actual services or information; (2) understand the personal and emotional challenges associated with caring in this context – grief, sadness, fear for the child’s future, feelings of inadequacy, feelings of isolation; (3) understand the social situation – gender issues, the home environment, the social networks, the introduction of health and allied professionals; and (4) appreciate the financial and employment implications for caregivers. We recognise the learning and knowledge acquired by family carers as they grow in their expertise. The chapter will conclude by considering the types of supports necessary to facilitate effective caring in these contexts.
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Further Reading
Edelson, M. (2000). My journey with Jake: A memoir of parenting disability. Toronto: Between the Lines.
Gill, B. (1997). Changed by a child. New York: Broadway Books.
Gothard, J. (2011). Greater expectations: Living with Down syndrome in the 21st century. Fremantle: Fremantle Press.
Power, P. W., & Dell Orto, A. E. (2003). The resilient family: Living with your child’s illness or disability. Notre Dame: Sorin Books
Scorgie, K., Wilgosh, L., & Sobsey, D. (2004). The experience of transformation in parents of children with disabilities; theoretical considerations. Developmental Disabilities Bulletin, 32(1), 84–110.
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Barrett, P., Hale, B., Butler, M. (2014). Informal Caring and Early Childhood. In: Family Care and Social Capital: Transitions in Informal Care. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-6872-7_4
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