Competence
Parents caring for children with special health care needs or long-term disabilities are called to a new level of competence as medical caregivers, often as soon as the child is discharged from the hospital. There is no accepted measure for success with this task, though failure can be met with repeated hospitalization or removal of the child from the home. This chapter evaluates, through parent narratives, how parents obtain and view their competence. Some parents perform in-depth research into their child’s medical problems and achieve a surprisingly high level of knowledge. This is often discounted by both the parents and health care providers. The moral work done in this area is significant. Parents must change their priorities and re-align their expectations for their child’s success. They must adapt to a slower developmental pace, and create for the child a safe haven where the child’s disability becomes the accepted norm.