Parents navigate unchartered waters when their child’s development, health or needs do not follow the expected journey of parenting a typically developing child. Some people may have already experienced the life role of mother or father and all of the joys and responsibilities that go with parenthood. However, for others, parenthood begins on uncertain grounds with a child’s health or development causing strain and questions that sometimes cannot be answered by anyone.
Medical and health professionals can offer likely scenarios, and likely changes or ways that the child may progress or the services and care that they may need. However, no-one can describe the personality that the child will have, the personal qualities and characteristics that the child will have and how the child will manage their own diagnosis or disability.
Families have hope, expectations and dedicate themselves to their child’s health, well-being and optimizing their child’s life opportunities. Parenting a child with a disability is a unique kind of parenting that encompasses many usual child care practices, plus the need to provide direct assistance in daily living tasks, some medically, educationally and developmentally specialized tasks, as well as the multitude of responsibilities involved with managing the requirements of disability.
Much has been described about how parents react when their child receives a diagnosis of a medical condition that may lead to disability. Initially the stages were described by psychologists and the stages were assumed to follow the Kubler-Ross seven stages of grief. However, other researchers progressed our understanding about how parents, and mothers in particular, manage and adjust to the role of caring for their child with a disability.
In Helen’s research, mothers were asked about their journeys. Four consistent phases (or stages) were identified by mothers. Other researchers have described similar journeys and stages or phases.
The four phases were:
- Initial shock, disbelief and grief phase
- Disability focused
- Balanced phase
The phases may be familiar to you. Mothers have said that they feel like they are in one phase or all four phases at once sometimes. Some women think that the phases are a good way to summarize a very complex journey. Some fathers agree that they also experienced a similar journey while others have a different experience. Here is some information about the phases: