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.

Real Friends

In the fall of 1967, John was excited to discover that the family building a home across the street consisted of a mother, a father and FOUR boys! Joy! From the moment we met them, we knew they were special -- fun-loving, kind and warm -- a delight to be around. My mother felt a strong kinship with Carol -- they shared a love of gardening and kids and were both quick to see the humor in most situations. John became such a fixture in their home that the youngest remarked to me recently that he grew up thinking of John as another brother -- with his white-blonde hair he blended in beautifully with the four tow-headed brothers. When he was with them, John was in a testosterone filled heaven -- digging in the dirt, playing with trucks and building forts in their yard. He even grew his hair long because they did -- they were guys together and it was and continues to be great. They still see John frequently and call him often just to keep in touch. They drive him back and forth to the airport when he comes to visit me because he's one of the family. The joy John felt when he heard they were moving in is the same joy he feels today when they stop by or send him a package of photographs of their kids. Those children now view him as a sort of uncle -- they too are becoming part of the circle of love that surrounds my hero, my brother, John.

Growing Pains

In the beginning, my parents' energies were focused on keeping John healthy. His head was so large and grew so fast that he was brought to the doctor's office frequently for check ups and head measurement. I recall my parents going from doctor to doctor, looking for someone who would understand and approve of their choice to keep Johnny (as we called him then) at home and who would offer them some hope that he might be okay and that our family might be okay, even though we faced a special challenge. I'm sure the growth of his head was really frightening, especially since they had no yardstick by which to measure the rate of change -- there wasn't anyone quite like him to be found in the general population! They did eventually find a terrific doctor and my mother kept careful records of Johnny's progress, both physical and intellectual -- it was slow, but it was steady and our doctor somehow had the wisdom to understand that progress, rather than meeting "age appropriate timetables" would be the goal for Johnny.

My mother made him a special headrest so she could put him down during the day without worrying that the weight of his head would break his neck. She used a block of perforated foam from which she carefully removed pieces, forming a hole into which the back of his could rest. She placed this foam into a car seat, belted Johnny in and placed the car seat on the floor where my sisters and I could explore him and play with him. He thus became our baby and we delighted in making him laugh, feeding him 'tookies' and sharing our toys with him. In retrospect, I think those early years may have been the easiest, before he experienced the pain of having his friends grow up and away from him as they matured in ways that he did not. There were many times when I watched him stand in the driveway and stare as yet another friend learned how to ride a bike and left him behind to play with other more "able" kids. True, he always had his sisters, and, eventually a family with 4 wonderful boys moved in across the street and became a permanent part of his circle of love.

Chicken Soup

John has bronchitis (again!) and, after struggling with it for several days, he made an appointment with his doctor for this morning at 10:30. He was given medication at his doctor's office and his health improved amazingly in the 8 hours since he received it. Our dear friend Michael heard that John was 'under the weather' and so stopped by his apartment with a big container of Whole Foods' fabulous chicken soup. John has a terrific circle of love around him. If life holds anything better than that for us, it is news to me!

Giving

John volunteers once a week at the local high school checking IDs at the door. He enjoys being around the kids and is happy to be out in the community, making a contribution and being productive. He learned early about the joys of giving -- my Dad was a very generous man He was one of the first Presidents of MAARC -- Milford Area Association for Retarded Children. We kids helped him with mailings of newsletters, bringing our friends along to assist with the "assembly line". It truly was merrier with more -- the building used was not very well heated, so the extra bodies were appreciated in more ways than one!

I am as proud today as I was as a kid of the courage my Dad demonstrated as a pioneer in the movement to keep children with intellectual disabilities at home with their families. Life takes many unexpected turns. When my parents decided to keep John at home, they could not possibly have known that he would 30 years hence be the glue that held our family together.

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.

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.