by Stan Marsh
Rubinstein-Taybi Syndrome. June 28, 2007
Until a few days ago, I had no idea what that was. Thanks to modern medicine, we now know it to be the elusive answer to a lifelong quest for understanding the nature and cause of my sister’s developmental problems.
My sister’s name is Meredith, the oldest of three siblings. She was born in Colorado January 8th, 1935. I was born three years later in Kansas, and our younger brother came along in Illinois during the second year of World War Two.
I think to understand the character of Meredith’s travels through life, one must first understand the nature of the times in which we grew up.
A world wide depression was under way during our early years. Few escaped the ravages of economic collapse. Times were hard. Health care was pretty basic and of course antibiotics didn’t come along for general public use until after the war. There was no such thing as special needs programs in public schools. And people generally had little to no tolerance for people who were “different”.
My first vivid awareness of my sister’s plight took place the summer of 1942 in Collinsville, Illinois at our home. She had been ill with pneumonia, surviving only to be left with horrific ear infections. My mother spent many nights treating her with ear drops and comforting her until inevitably the drum would break giving her relief.
Years later I was told this was the third bout of pneumonia and damaging ear infections Meredith had suffered to that date. There were two more in following years before a new medicine called penicillin finally put an end to them. But by that time all hearing in one ear and 80% in the other was lost. She hears today, though still with some difficulty, with the aid of modern technology.
Mom said that she and dad first noticed developmental delays early. Walking was late, as was talking, the latter being disjointed and seeming disconnected from the sense of what was going on around her. The doctors said it was the bouts of high fever that caused the delays, and that she would probably catch up.
That of course didn’t happen. And school was a disaster. She was ridiculed by ignorant staff and made fun of by just about everyone else because of her short, stout stature and “odd” manner of sentencing. The doctors were stumped, and speculated she had suffered brain damage due to high fever from all the illness. To add insult to injury, she began to suffer episodes of petit-mal epilepsy.
More tests, this time at Barnes in St. Louis. Painful needles were stuck in her head and measurements taken of brain waves, which confirmed the epilepsy but answered none of the questions regarding her developmental delays. More speculation, this time suggesting there may have been oxygen deprivation because she was born breech.
School officials by then were encouraging my folks to put Meredith in an “institution”. The doctors generally agreed. That was what parents were expected to do in those days with children who were “different”.
My parents were professional people; dad a chemist who later became a university professor, and mom a public school librarian. They considered all that was before them, and what they were being pressured to do, and summarily rejected it across the board.
Therein lies the beauty of the rest of the story.
For the next 12 years of Meredith’s schooling and social development, such as it was considering there was no precedent for what my parents were doing, the battle was on. Conferences with teachers and school officials were nonstop. Evenings at the kitchen table drumming away at the three R’s became a mainstay of after dinner activity. Tutors came and went, most wondering why their time was being wasted on a “retard”. Many cries of frustration amidst streams of tears echoed from the walls on those nights. Not all were from my sister.
Then there were socialization issues. Kids like sis just didn’t go to school. She was unmercifully shunned, chided and bullied at every turn; a thing hard enough for children without developmental challenges, but especially cruel for one who barely understands it. Worse, school staff would often simply look the other way. This was a twelve year road paved with the harshest of stones.
But the folks ploughed on, including her in everything, adamant that Meredith, as a family member, be treated with regard and proper respect.
Those years passed eventually, and resulted in one hell of a hard earned high school diploma. She could read and write; not as well as most, but as good as many and the envy of those who never learned. Only numbers were a problem. This she never quite got the hang of, although once a phone number or address got fixed in her mind, it was there forever. Dad said once that if sis has to learn something, it had better be taught to her right the first time, because otherwise you’ll play hell getting her to change directions.
We ultimately moved to Champaign, Illinois, the home of the University of Illinois, where sis, I and my family continue to live today. The folks are gone now. But before they left this world, they had accomplished what I regard as something of a small miracle. Sis, under their constant guidance and tutelage over the years, learned to use all the public bus routes in the city, learned to live and function in her own cooperative apartment and learned to work as a food service employee at a local hospital. God granted them lives long enough to see her retire with a small pension at the age of 65 following 45 years of gainful employment at that hospital..
The greatest comfort to me over the years is how the times have changed for the better for people like my sister. Medicine and science of course have led the charge, with medicines that assured a chance for a long, relatively disease free life, and research that has provided us with ever evolving insights into the mysteries of life. All of which provides us with greater understanding and tolerance for the many differences among us. And finally, education. For all its criticisms and faults, public education, through the recognition of the importance of special needs programs, has become the great equalizer for those among us who face the greatest education and life challenges.
This year Meredith turned 72. There are ongoing health problems, but she bravely plugs away with a regimen that keeps her occupied with activities she enjoys; family gatherings, church activities and the minutia of daily living.
We help her with those things that continue to challenge her. As POA, I handle her financial affairs beyond an allowance she has learned to budget for groceries, hair appointments and jaunts to eateries around town with church friends. We also closely monitor her doctors appointments and medicine regimens, making sure her pill box is always up to date and clinic visits always take place on time.
Other than that, she pretty much runs her own life. And if you ask her, she’ll allow as to how she likes it that way.
Photos: One is of Meredith at age two, the other is of her (with her great niece) at age 71.