| This qualitative study reports and analyzes the narratives of young children and adolescents who live with a sibling with a disability. While there is much research from the perspective of parents reflecting on the family or adults recounting childhood memories, this inquiry draws upon interviews with children and adolescents ranging in age from ten to twenty. The study is based on twelve interviews of undiagnosed children which focus on perceptions relating to daily life with a sibling with a Pervasive Developmental Disorder.;The rationale for this inquiry has its roots in a determination to understand potentially complicated sibling relationships connected to a specific family dynamic. Data, collected primarily through confidential in-depth interviews with the undiagnosed child, were augmented by parent interviews and a participant focus group. Participants were asked to comment on life with a brother or sister with a disability, imagining both short-term and long-term effects of the disability on their own lives. Issues investigated included embarrassment, fairness, and personal responsibility. In describing sibling relationships, those interviewed revealed feelings of loss, frustration, and confusion, as well as a sense of loyalty, devotion, and pride. Findings suggest compassion among participants who were often dedicated to perceiving their families as ordinary, despite extraordinary experiences.;The initial research questions, which focus on how children understand life with a sibling with a disability, guide the conceptual framework of this inquiry, and contribute to a grounded study, which enables information relevant to these seminal questions to emerge. Insight provided by participants extends our knowledge of how the strength of a child's character is formed, and it is anticipated that this information will be valuable to professionals working with children and adolescents in both therapeutic and educational settings. |
