Initiative and Advocacy When a Parent Has a Child with a Disability

Abstract

This paper describes the experience of parenting a child with a disability, starting with expectations while pregnant, moving on to first reactions, the experience of getting assessments, arranging interventions, evaluating interventions and changing them. The focus is on realizing the need to advocate vigorously for one's child in the midst of intense and mixed emotions that develop and change over time. Conceptual and clinical attention is given to relations within the marriage and the family, with doctors and educators, and with many other representatives of the society which parents are preparing their children to enter. Four cases are presented, ranging from infancy to college and beyond.