Ups and Downs: Stories of Family, Community, and Down Syndrome

Abstract

From the time my brother Nicholas was born, my family knew he was different – and we knew our lives would be different because of him. Nicholas had Down syndrome. His first days were spent in the hospital; his first years were spent at therapy sessions. In 1996, when I was in fourth grade, Nicholas died suddenly, leaving me to wonder about the ways that his life with Down syndrome and his early death both shaped and shattered the identity of my family. In 2009, at my first full-time job out of college, I met Brian Guillaume, a young school board member whose first son, Anthony, was born with Down syndrome. Through the story of my family, the story of the Guillaume family, and the story of how our two families connected, this thesis explores the ways that Down syndrome affects a family and a community.