Introduction

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 special needs 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.
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. Friends and family members recommended that John be institutionalized for the 'good' of my sisters and me, but my mother was resolute and home he stayed.
I cannot imagine what my life would have been like had John not been in it. I created this blog to share with others the joy and pain I have experienced as the sibling of a special needs person and to let others know of the tremendous success my hero has achieved.

Tuesday, December 8, 2009

Upward Mobility

When John was a baby, he loved watching my sisters and me play with one another and with our pets. He had a keen interest in animals from the start and we all loved going to the zoo and sharing with him the things we'd learned in school about elephants and monkeys and giraffes. Slowly, at his own pace, he increasingly engaged with the world, talking and observing life around him. He reached out physically too -- playing peek-a-boo and patty-cake with his sisters and petting the animals as they came his way. Like all little ones, eventually, he became independently mobile too. However, his head was so large and his limbs so short that he had to devise his own unique style of crawling -- on all fives -- hands, feet and head! He would zip across the room with his sisters dashing beside him, ready to redirect his path away from a table or sofa or to snatch an errant toy out of his way. When he came to the end of a rug we were at the ready with a wool doll blanket for him to use to slide across the floor to the next area rug. The blankets were often charged with static electricity and his soft blond hair stood on end when he sat up at the end of a run, making him cuter than ever.

Fun as crawling was, he wanted more and, as usual he had three exuberant teachers ready, willing and able to help him take on the next challenge -- in this case, walking! I have no recollection of how we came up with the idea of having him hold onto the handle of the big doll buggy, but if I had to guess, I'd bet it was John's idea. At first, he'd stand joyously holding onto the carriage for balance. As he became more stable and we became increasing eager for him to walk with us, we began moving the carriage as he held on. I believe he was four years old on the glorious day he took his first independent steps. Although it was unquestionably a group project, on that day, the spotlight belonged completely to him.

There were hard things too, even when John was very young. I remember vividly his being teased by the little boy next door when I was about 6 or 7 years old. I can still feel the fury that rose to my throat and that carried me away from the front yard at lightening speed and up the stairs to my bedroom to grab the perfect object with which to slap that nasty boy -- my new cosmetics case sent to me by Grandma. And yes, it delivered a very nice slap, and yes he told his mother on me and of course she shared with my mother the story of rotten me slapping her son. My mother, ever patient and wise, asked me to explain before deciding on a suitable punishment. When I told her the story, she reminded me that "we don't hit" and then, smiling quietly, she took me by the hand into the house for cookies and milk. I knew then that she was glad I slapped that rotten kid, even if she couldn't come out and say so. That was the first time I defended John's honor, but it certainly wasn't the last.

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