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.

Sunday, January 3, 2010

Emergency Response

I have three children and found it difficult to decide at what point each of them was ready to be left home alone. Experts recommend that you wait until the child has the judgement to cope with a problem. Using that as a yardstick, I'd say I made one wait too long and probably trusted another too early, but no one was harmed in the process, which I guess is the real goal.

The same could not be said for John, however. When he was 12 or 13, he began talking about his long term goals, which included having his own apartment and driving a car. "I don't think you can drive because you can't reach the pedals," I remarked to him whenever he mentioned his desire to drive. I was less sure about his living in an apartment, though I don't think any of us really believed he could live alone back then. After spending several years at a terrific boarding school near Boston, he made the transition to group home living, which, he soon discovered, was not the fun he initially thought it would be. As with my kids, the issue I struggled with for him when he announced his intention to live alone was whether or not he could respond adequately to an emergency. Unfortunately, we learned the answer to this question very soon after he moved into his first solo-living situation.

He loves to cook and is very serious about making himself nutritious meals that include all the basics. When we were kids, we usually had steak for dinner on Saturday night and John continued this tradition once he had a home of his own. On a cold January night, he was broiling steak in a dirty oven and set off his smoke detector. A resourceful guy, he piled several phone books onto a kitchen chair, setting a second chair next to it to use as a climbing step. When he climbed onto the pile of phonebooks, he was still several inches away from being able to reach the smoke detector. A search of his kitchen led him to the longest utensil in his drawer -- a chef's knife. He climbed back onto the climbing chair, crawled up the stack of phonebooks and reached with the knife, but found himself to be a hair away from reaching the button that would stop the horrendous noise. Standing tip-toe on the slippery pile, he reached as hard as he could. He lost his balance and tumbled to the floor, falling on top of the knife and stabbing himself in the chest just inches from his heart. The wound was deep and bled profusely, scaring him. He called my sister and me and, finding neither of us at home, called 911, then ran to the kitchen of a kindly neighbor who comforted him as they awaited the arrival of the ambulance. Eight stitches repaired the wound and he remained in the hospital overnight for observation. He bears the scar of that accident on his chest to this day. Horrible as the experience was for him, I realized soon afterwards that he could not have handled the emergency any better than he did.

And, resourceful guy that he is, he has morphed Saturday night from steak night into lasagna night. My hero, my brother John.