Rescuing Hope describes parents’ experiences after hearing their child’s diagnosis with a developmental disability like 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 11 videos in the Rescuing Hope series to learn about parents’ sense-making journey. It starts with the difficult moment of their child’s diagnosis, continues through the next months of learning, connecting with others, and planning for the future. The last video is about 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 interviews with 33 parents and 9 grandparents of children with Down syndrome or Spina Bifida, we tracked their sense-making journey. Half of the people we spoke with 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 we interviewed their parents.
Through our analysis of what families said we recognized that the core of everyone’s sense-making journey was the process of rescuing hope.