Parenting children with Down syndrome: A systemic look at the disability experience

Abstract

The birth of a child with a disability is often experienced as traumatic and life altering to the members of the family. Current marriage and family therapy programs and curricula require very little, if any, clinical training or supervision related to disabilities, and this prompts many therapists in the field to consider therapy with families experiencing disability to be outside their scope of practice. As a part of its nature, Down syndrome (DS) is a spectrum disorder with varying levels of health and general functioning from individual to individual, which change over the course of the lifespan. Parents of children with disabilities often experience greater levels of stress and are at higher risk for developing relational/psychological distress than parents of neurotypical children. Unique parental stressors include ambiguous loss, balancing multiple parental roles, increased demand for resources, and discrimination stress. This study interviewed married couples to observe the unique experience of parenting a child with DS and the diagnosis' effects on the individual parent, as well as marriage and family dynamics. From the gained narrative observations, clinical implications are presented to assist therapists in appropriate treatment of couples and families navigating life with DS.