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, April 25, 2010

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.

Sunday, April 18, 2010

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.

Friday, April 16, 2010

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!