My cousin Kendall passed away this past year at the age of sixty-one years as we count chronologically, but he never grew up. Kendall was born in Dhahran, Saudi Arabia, and had Down Syndrome. His parents, my aunt and uncle, lived over seas for thirty years, and nothing much was being done at that time anywhere in early education for the mentally handicapped or the parents. Abnormalities in a birth always come as a surprise to parents happily looking forward to a life filled with so-called normal expectations, but to older parents living in a third world country, Kendie’s birth was heartbreaking and unexpected.
Their initial and common reaction was to take the blame. “what have I done?” “How could I have prevented this?”
Down Syndrome is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is typically associated with physical growth delays, characteristic facial features, and mild to moderate intellectual disability.
The average IQ of a young adult with Down Syndrome is 50, or equivalent to the mental age of an 8- or 9- year old child, but this varies widely. Education and proper care have been shown to improve quality of life, ideally from birth on. In the past, the life expectancy was about 30 years, but now it is about 50 or 60. Down Syndrome is the most common chromosome abnormality in humans, occurring in about one per 1,000 babies born each year. It is a lifelong condition, but with care and support, children who have Down syndrome grow up to have healthy, happy, productive lives.
Fortunately so much has changed in public acceptance of the mentally challenged. A hundred years ago, these people were kept in a back bedroom, and lived out their brief lives alone and unseen. It was assumed that they were incapable of learning, and even their existence was kept a somewhat shameful secret.
Education and proper care have been shown to improve quality of life. My daughter earned her college degree in the study of the mentally challenged, some of whom had Down Syndrome. Specialized education is a wide open field and now some children with Down syndrome are educated in typical school classes. Some individuals with Down Syndrome graduate from high school and a few attend post-secondary education. In adulthood, about 20% in the U.S. do paid work in some capacity with many requiring a sheltered work environment.
Kendall’s life fell in the middle of an “enlightenment” period in that though he was ubable to participate in an early-childhood education in Saudi Arabia, he was later sent to a school in the U.S. where he lived throughout his life. He never grew beyond the size of a 9-10 year old, and he was always cheerful and happy as a small child, with a big smile lighting his face when he was pleased or when he recognized a friend. These people live at the very pinnacle of innocence. It is we who need the education to accept them for what they are, God’s Special Children
About 35 years ago, a friend with two young sons called early one morning to tell us of the birth of a fourth son. This family prided itself on building good health, strength and athletic ability. Each was proficient in sports. As Dr. Advice answered the phone, I caught a slight change of expression as he said “Maybe God thought you needed a cheerleader for your basketball team.” He had promptly diverted the conversation from one of mixed feelings into one of positive anticipation. Their fourth son had Down Syndrome.
At the time the University of Washington had a concentrated study of the condition, and the mother of this child went there from California and learned what was being done to educate babies from birth. Instead of waiting for several years before teaching basic skills, Blair began immediately being prepared to live in the mainstream of society. Before speech, he was taught sign language, which hastened his communication skills.
As soon as possible, Blair’s mother took him into school classes and introduced him, explaining to the students that he had Down Syndrome and what it was. When old enough, he was enrolled in school and treated just as any other student. He was never made to feel “different” or out of the loop. His mother organized a baseball club made up of mentally challenged children, which developed their concept of team play, and their natural joy in physical activity. She even went to members of the Oakland Athletics professional baseball team and appealed to them for pieces of athletic equipment, which they gladly donated, taking the little team under their wing.
To see Blair today, with his show of confidence and compare him to Kendall, a lot can be attributed to his early training.
Years ago, when Blair was about 5, I received this poem from one of his older brothers while he was a student at U.S.C.
My brother Blair, was born with Down Syndrome, a form of mental handicap. December 1990
BROTHER, by Sean Hogan
Brother so kind, how can it be?
Brother “What happened? How come he can’t see?
Brother I’m sorry; you will never be like me.
Brother your life will set me free.
Mother please, the blame will never be known.
Mother in this life, the harvest can not be resown.
Mother worry not so much for him.
Mother cry more for me and Tim.
Father others expectations may run too high.
Father friends will come, fear, and say goodbye.
Father they say patience and time can only tell.
Father without you, his life will surely be Hell.
Grandpa, has Peter now become your best Friend?
Grandpa, how come you never stayed till the end?
(As Peter denied the knowledge of knowing Christ, Grandpa tries to deny Blair’s existence and relationship to him.)