Maternal Responses to the Life and Death of a Child With a Developmental Disability: A Story of Hope

Abstract

Losing a child is probably the most devastating event that a mother can experience. When a child with a developmental disability dies, this painful loss may follow months or years of exhausting parenting. How do mothers of children with developmental disabilities respond to this dual loss (the loss of their ideal child and then the loss of their actual child)? This project used a semistructured interview and the Grief Experience Inventory to explore the bereavement experience of eight mothers who have lost such children. It explored variables that are associated with optimal or complicated bereavement. It was found that most of the mothers were very successful in using cognitive coping strategies to find meaning and benefit in the life and death of their children and were able to continue seeing the world as benevolent and purposeful. Exceptional cases are discussed, and implications for helping professionals are offered. The findings of this study fill a significant gap in the theory of parental coping and bereavement.

Socio-demographic characteristics of parents and emotional burden on discovery of disabilities of their children in a South African community

“…The immediate shock of the confirmation of the presence of a visible physical impairment, and the reality of the metaphoric death or loss of the ideal, dreamed of and the wished for child might be responsible for the high percentage expression of grief, anger and shame (Fortier and Wanlass 1984). Similar findings had been previously documented by Bristor (1984);Milo (1997) and Tanner et al (1998).…”

“…Mourning may continue for a long time, it is periodic and seldom disappears and might be chronic (Olshansky, 1962;Mindel and Vernon, 1971;Wikler, et al 1981;Copley and Bodensteiner, 1987;Milo 1997) or postponed (Frued, 1924). Most parents achieve partial resolution of this painful emotion (Fortier andWanlass, 1984, Aitken et al, 2004).…”

Good Grief: Exploring the Dimensionality of Grief Experiences and Social Work Support

“…These 10 items reflect what other researchers have reported to be positive aspects of grief: continuing bonds with the deceased that reflect that these bonds give the griever comfort (Calhoun & Tedeschi, 2002;Neimeyer, 2002); positive growth in spirituality (Attig, 1996;Milo, 1997;Neimeyer, 2002) Neimeyer, 2005); value reconstruction and meaning-making (Frantz, Farrell, & Trolley, 2001;Janoff-Bulman & Berger, 2000;Milo, 1997;Neimeyer, 2005). The potential scoring range was 10-50.…”

A bereavement group for parents whose son or daughter died from cancer: how shared experience can lessen isolation

“…Indeed as the loss of a child in modern Western society is considered unacceptable and runs against the 'natural order' (Milo, 1997), it might be reasonable to assume that this most significant and tragic event in a family's history transcends other differences and as a result that their experience of grief will be based on a shared loss. However, this assumption needs some unpacking to demonstrate the 'process' by which people who have experiences in common come to create a shared narrative; one way of exposing this process is through the use of the concepts of culture and rhetoric -particularly as they relate to the vicissitudes of life.…”

“…While many bereavement groups are for the loss of parents, partners and other relatives or people close to the bereaved, the group under discussion here is for parents whose son or daughter has died. As Milo (1997) says, the death of a child at any age and from any cause runs against the natural order. The 'assumed sequence' is thrown out of order as parents might expect their children to care for them at the end of life, but instead they have to endure the 'tragic absurdity' of watching their child die (Sourkes, 1977, p. 65).…”