Recurrent grief in mothering a child with an intellectual disability to adulthood: grieving is the healing

Abstract

A B S T R AC TMuch of the literature on mothering a child with a disability focuses on grief in the context of diagnosis, with a paucity of longitudinal studies focusing on ongoing grief as the child moves through the life stages. This qualitative study explores the existence of recurrent grief within the lived experience of six women, in mothering their children with intellectual disability through to young adulthood. Informed by the differing theories of grief and disability, the study considers mothers' perception of the experience of recurrent grief as influenced by personal and societal factors, with a focus on its triggers, its manifestation and its amelioration. The findings have relevance to social work practice, policy and research in revealing the necessity for ongoing support and advocacy for mothers of children and young adults with intellectual disabilities.

Quality of Life and Concerns in Parent Caregivers of Adult Children Diagnosed with Intellectual Disability: A Qualitative Study

“…The birth of a child with a developmental disability can have a negative emotional impact and a destabilizing effect on family dynamics [ 1 , 2 , 3 , 4 ]. Intellectual disability (ID) is a developmental disorder, which begins before the age of 18 years, and is characterized by cognitive and adaptative behavior deficits, expressed as deficiencies in the conceptual (reasoning and learning), social (social skills, interpersonal communication and emotional intelligence), and practical (daily routines) domains [ 5 ].…”

“…In terms of social empathy, some parents say that children with ID are continuously rejected and discriminated against, which in turn, causes them to feel great suffering [ 9 , 11 , 21 , 25 ]. They constantly are worried about the uncertainty of the evolution of their child’s disability at a physical level and some other levels like academic performance, or how isolation and social rejection could affect them, [ 2 , 23 ].…”

“…The academic literature indicates that the quality of life of these parents may be affected from the moment of diagnosis of their child with ID, but especially during childhood [ 32 , 33 ]. Besides, some studies have shown that the well-being and quality of life of the parents of adolescents or young adults with ID did not improve over time [ 2 , 17 , 32 , 33 , 34 , 35 ]. This is likely because of continued fear and concern about the uncertain future of their children.…”

An autoethnography of a neurotypical adoptive mother’s journey through adoption into the world(s) of intellectual variety in the early years of the U.S. Education System

“…I realize now as well that my fears for Belle and her future, as well as my grief (Brown, 2016) were driving my quest to get the bottom of her challenges, to get a clear diagnosis. To understand the origin of these neurodevelopmental challenges was the ability to "fix" the problem."…”

“…Despite the fact that I was aware that our then foster daughter was not meeting developmental milestones, hearing the actual diagnosis was both temporarily paralyzing and tinged with grief (Brown, 2016). An endless litany of repeating questions emerged.…”