Abstract
Despite years of research about developmental diversity, relatively little is known about the experience of couples raising a child with Down syndrome. Previous research has identified that Ambiguous Loss Theory can be helpful to understand the parents’ process of navigating the uncertainty, challenges, stressors, and demands of raising a child diagnosed with a neurodevelopmental disorder. Building on previous research and the framework of ambiguous loss, this study sought to provide insight into the lived experience of couples raising a child diagnosed with Down syndrome. Using a qualitative directed content analysis of the paired responses to open-ended questions from 16 couples, the current study provides insight into the couple’s experience of ambiguous loss and greater understanding about their coping strategies. Results indicated a process of dealing with ambiguous loss by most couples. Coping strategies reported by the couples included medical and educational advocacy, deepening and building connections, and gaining new perspectives on raising a child with Down syndrome. Implications for policy and practice are also included, based on the coping strategies, skills, and resources available to parents of children with Down syndrome or other neurodevelopmental disorders.