Rescuing Hope is the typical journey on which parents go after hearing their child’s diagnosis of Down syndrome. Each video in this project uses the experiences and words of families of children with Down syndrome to represent a key moment in the process of Rescuing Hope.
Follow the 12 videos in the Rescuing Hope series to learn about parents’ sense-making journey, from the difficult moment of their child’s diagnosis through the next months of learning more, connecting with others, planning for the future, and belonging to a community of people with differences and disabilities.
These videos are the result of research with parents and grandparents who learned of their child’s diagnosis with Down syndrome or Spina Bifida. Through in-depth interview with 33 parents and 9 grandparents of children with Down syndrome, we track their sense-making journey. We also included 7 parents of children with spina bifida. Half of the people we interviewed learned prenatally about their child’s intellectual or developmental disability, and half learned when their child was born. The children were all three years old or younger when their parents were interviewed.
The overall goal of the research was to understand the process that families go through as they make sense of their lives after receiving the unexpected news. Through our analysis of the interviews we recognized that the core of everyone’s sense-making journey was the process of rescuing hope.