The journey from diagnosis to balance - how mothers describe their experience caring for a child with a disability.

Parenting a child with a disability is a unique experience – it encompasses many usual childcare practices but also often includes additional care tasks above and beyond these. Whilst mothering a child with a disability is similar in some ways to the experience of all mothers, there are marked ways in which this journey is also very different.

Research by Helen Bourke-Taylor asked mothers of a child with a disability about their journey and found there may be four consistent phases that mothers may identify with.

What were these phases?

Initial shock, disbelief and grief phase

Seekership phase

Disability focused phase

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.

Watch the free 12-minute video explaining these phases.