Parents frequently experience a period of shock and denial. This can be helpful as a protective mechanism until they're ready to absorb more information. This may be followed by a period of guilt where they might feel that they should have sought help sooner or more aggressively. Anger might be next as the parents become aware of a feeling of helplessness and loss of control over their own child's life. A life which may be taken over by painful or intrusive investigations, strangers asking questions, and, if hospitalized, unfamiliar policies, routines and loss of privacy.
Anger can be a positive force because it motivates people to action.
Parents begin to assume control again by learning all they can about the illness, by advocating for their child's needs, by teaching their child about the illness and by beginning to learn aspects of the child's care. The parents are reluctant to discipline or have expectations for the child. Rejection is a relatively uncommon reaction of parents. In this situation, the parents deny the severity of the illness, may withdraw emotionally from the child or neglect necessary treatment. Acceptance is the ultimate goal of most parents.