The beginning

I have wanted to share my brother's story for a long time. He is a trailblazer, or perhaps more accurately, my parents were trailblazers in the movement to keep disabled kids at home with their families after birth. John was born in 1960, a time when almost no middle class parents kept kids like him at home. Somehow, my mother knew that his potential could only be maximized by his living at home with his parents and three sisters. And so he did. I know it was really hard for many people, but it was never hard for me. My mother, who had breast-fed her daughters, knew she needed to be able to measure the amount of nutrition he took in and so bottle-fed her son. I remember her saying it took about an hour for him to ingest an ounce of formula and that he needed 24 ounces a day. You don't need to be a rocket scientist to figure out how she spent her days in the summer and fall of 1960. Even so, I recall sharing her lap with him and her reading a book to me while she fed him. He was really cute too -- so tiny and blond with big, soft brown eyes and so clean smelling -- like corn starch.

He was born about a month early and I've been told it was a very difficult birth for my mother. There were no sonograms in 1960, so no one knew in advance that he had a very large head, even for an achondroplasiac dwarf. Despite the best efforts of the doctors, his brain was damaged during birth, leaving him mentally retarded. Family members recommended that John be institutionalized for the 'good' of my sisters and me, but my mother was resolute and home he stayed. My strong, prim and proper Grandmother was horrified by her daughter's renegade decision, but helped her anyway. She stayed with us for an extended period after John's birth, running the household for my parents and eventually hiring help so we could manage after she returned to her home in Minnesota. She seemed rather cold when we were kids, but now I know what a great lady she really was --I admire her for having had the courage to put her feelings aside and help her daughter when she needed her most.