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.

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?

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)!

Friends

I could tell from the happy tone of his voice when he called last night that John's holiday party had gone well. On Saturday afternoon, he and eleven friends gathered at his apartment for a trim-a-tree party. John served Chinese food (which, he informed me during our call, was scrumptious), wisely keeping party preparations to a minimum. After everyone had their fill of pork fried rice, dumplings and egg rolls, they added their ornaments to his tree, which he had placed in the center of the holiday-light trimmed picture window in his living room. Proud of his new apartment, he was pleased to have an opportunity to show off his comfortable home to his friends. The party started at noon and didn't break up until after 3:00 -- I'm certain that John's assessment that a good time was had by all is accurate!

One of his guests, a beautiful woman named Terry, has been his friend since elementary school. They have a gentle, caring relationship and have always been able to make one another laugh. Childhood friends are like that.

When John was young, my Dad really worried whether he would be able to develop meaningful friendships. To ensure that he never would be lonely, my Dad worked with John to help him develop a love of reading. Although he tried with all his heart to teach John to share his love of reading, he simply did not. Daddy needn't have worried, however. John's life may not be full of books, but it is overflowing with friends.

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.

Successfulness

I think my brother is wonderful and I admire him tremendously, but that's not the reason I wanted to write about him. I have met several parents of disabled kids over the years, both informally and as a guest speaker to parent groups, and have noted that these parents share one overriding concern -- that their children will be lost, lonely or even homeless after they (the parents) have died. Sadly, both of our parents are dead. John, however, is happy and healthy and even planning a Christmas party for friends to be held Saturday night!

When he was born, he was pronounced "uneducable" and my parents were told they'd be lucky to successfully toilet train him. Today, he lives in his own apartment, does his own grocery shopping and cooking,holds a job that he really enjoys and has an enormous support group that lends him a hand when he needs one. He is comfortable with himself -- comfortable asking for help, comfortable lending a helping hand to others and able even to handle the medical emergencies he's faced. Is he an incredible success? Yes -- totally. The kid you love can be too.

No Complaints

John loves running errands with us when he visits and it's a delight to have him along. On Friday, I had my car serviced and he came with me when I returned the loaner and picked up my car. As I've been going to the same shop since 2004, many of the people we encountered know me well and I introduced them to my brother. As is customary, each of them asked him how he was doing upon meeting him. His response, every time was, "I can't complain". He lights up a lot of lives every place he goes.

Warming Up

John flew to Detroit from Providence on Tuesday to share the holiday with us. He has an extensive DVD collection that includes many 1960s TV shows and he made certain he brought with him some of my old favorites -- he and I happily spent Tuesday night watching episodes from season 3 of the Mary Tyler Moore Show. He recalled how my dear friend Colleen and I watched it together every Saturday night in high school, after I'd made her cheeseburger of course. Watching the shows with him was a total trip back in time -- he recalls every little detail from the life of every person he loves -- and there are many.

He really loves to fart while we watch together too -- apologizing before the reason for the apology becomes obvious -- and he giggles like an innocent child when I suggest we need to clear the air with the aid of a match. "Don't set my pants on fire," he'll beg in an explosion of joyous laughter. It's one of our favorite "routines" and something I look forward to each time he visits.

Wednesday, he and my husband, Tag went shopping together for the ingredients for lasagna. Onions, cheese and peppers in large amounts -- perfect for a guy who loves to fart. I believe we may have a carbon off-set problem after Wednesday night, never mind the noxious output on big day itself...

Thanksgiving Day 2009

The beginning

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 disabled 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. My mother, who had breast-fed her daughters, knew she needed to be able to measure the amount of nutrition he took in and so bottle-fed her son. I remember her saying it took about an hour for him to ingest an ounce of formula and that he needed 24 ounces a day. You don't need to be a rocket scientist to figure out how she spent her days in the summer and fall of 1960. Even so, I recall sharing her lap with him and her reading a book to me while she fed him. He was really cute too -- so tiny and blond with big, soft brown eyes and so clean smelling -- like corn starch.

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. Family members recommended that John be institutionalized for the 'good' of my sisters and me, but my mother was resolute and home he stayed. My strong, prim and proper Grandmother was horrified by her daughter's renegade decision, but helped her anyway. She stayed with us for an extended period after John's birth, running the household for my parents and eventually hiring help so we could manage after she returned to her home in Minnesota. She seemed rather cold when we were kids, but now I know what a great lady she really was --I admire her for having had the courage to put her feelings aside and help her daughter when she needed her most.

No Sorrow

My job has been very challenging of late. Not so much the work -- more the people. It is difficult to accept that some of them are not the decent people I thought they were.

So, I come home and call my brother, John. We don't talk about work, at least not mine. We talk about real stuff -- like what he had for dinner and which 1960s-era TV show he's going to watch on DVD tonight. He always asks about each member of my family--even the pets--and he genuinely cares about what we had for dinner tonight, yeah--even the dog. We talk about how much he likes to work and whether he packed more boxes today than yesterday and what he brought for lunch. We always cover the important matters--his success at work, food, TV, weather and his favorite topic, farting. Real stuff about which we have real laughs. There is no room for tears when you speak with John. He laughs too much; enjoys life too much. He keeps me on course and happy. My hero. My brother, John.