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.

Monday, February 8, 2010

Love

I try to be an open-minded person most of the time but I am acutely aware that I am a miserable failure at being opened-minded about my brother. If you meet him and don't admire him, you won't last long in my life.

Obviously, my husband of 23 years is one of John's most ardent fans. When we decided to get married, his mother asked me whether John's "condition" was inherited. The question took me by surprise as I would not have considered getting married without discussing the issue with Tag and his family had that been the case. When I mentioned this conversation to Tag I again was surprised -- stunned really -- when he told me he had wondered the same thing. He added, "Kat, it doesn't matter to me -- either way I want to marry you and I want John to be my brother-in-law". Any question I may have had about my choice of mate dissipated with that comment. As usual, John helped me to uncover the truth -- in this instance, that there isn't a finer man on the planet.

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.

Tuesday, December 29, 2009

Lunch with My Hero

Since I didn't see John for Christmas, I flew to Providence and took him out to lunch on Sunday. As always, we chose an Italian restaurant that serves lasagna in large portions. Once he had eaten precisely half of his lasagna, he put his fork down and asked our waitress to bundle up the remaining piece so he could take it home and eat it later. An order of cheesecake to go ensured that he'd have a delightful Sunday evening meal.

Over lunch, we talked about the enjoyable Christmas visit he'd just had with our sister, Liz and he delighted in describing the frequency with which she lit matches to clear the air of fart waves. "She's going to burn herself lighting all those matches," he giggled to me.

"Farting can be dangerous," I replied agreeably.

"Don't be ridiculous," he responded. "Farting isn't dangerous -- playing with matches is dangerous".

As usual, his perspective on life was right on and left me laughing. What would I do without my dear hero, John?

Wednesday, December 23, 2009

Merry Merry!!!

Sadly for me, John will spend Christmas with another sister and her family. "It's only fair," he told me on the phone recently. "You have to share". Could any comment be more in keeping with the true spirit of the holiday season?

In this spirit of sharing, I offer his new favorite joke:

Q: Why are there exactly 239 beans in Irish Bean Stew?
A: Because, if there was one more, it would be 240 (too-farty).

Potty humor is one the joys of the season (make that all seasons)!