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, August 22, 2010

Abilities

Every summer, we spend at least a week on the beach, partly to relax and partly to reconnect with old friends and family members. This summer, we stayed in beautiful Watch Hill, Rhode Island, roughly a ninety minute drive to John's suburban Boston home. As always, our plans included a visit with John. When he and I discussed the details of our prospective meeting, I was surprised (and to be honest, a bit flattered) when he requested that we meet for lunch -- alone. No kids, no high school buddies, no siblings and no spouse. As Monday is John's free "chill day", he asked that I come up that day and take him to his favorite local Italian restaurant. He hugged me, as always, when I picked him up, but I knew immediately that something was troubling him. He was quiet in the car during our short ride to the restaurant and his brow was wrinkled with worry.

As soon as we were seated, he looked across the table at me and said, "I made a mistake at work". "What kind of mistake did you make, John?" I asked. "I was putting together the emergency kits (for glove compartments) and I got confused about the number of gloves to pack," he said. "I couldn't remember if I was supposed to pack two or three, so I packed three". His feelings of shame were palatable and my heart ached for him. "Good choice, John" I said. "It is much better for there to be too many gloves in the kits than too few. How many kits did you pack with three gloves?" "I'm not sure," he sighed. "I think about three or four." "Not too bad then, John -- just a few. What should we do about this"? He responded, "I told my boss I don't want to pack the kits any more because it's too confusing for me. Instead, I'm just going to put the labels on the boxes after the emergency kits are already packed."

"Great idea, John," I smiled. "It sounds like you fixed the problem already."

His relief at my approval was obvious and he changed the topic to that of his recent trip to North Carolina, including his visit to the fictional town of Mayberry. As we discussed his trip -- the fun he had riding in Barney's squad car and sitting in Mayberry's jail, I suddenly understood how misguided my obsession with the unfairness of his 'disabilities' has been. I've been so concerned about his challenges -- his brain damage and dwarfish that I somehow missed how really terrific HE is, just as he is. Visiting with him, alone, with no distractions from kids or friends, I had a delightful conversation with him -- complete with give and take, listening and talking -- dare I say it -- an ordinary, normal conversation. How have I been so blind? My dear hero, I know you forgive me. From the bottom of my heart thank you for teaching me to really see and understand the ability, not the disability in you.