Wednesday, October 22, 2008

Down Syndrome - A Little [Painful] History

Down syndrome was first described as a chromosomal-based syndrome in the 1930's. It was initially called Mongolism because it was believed that the physical appearance of a person with Down syndrome most closely resembled native Mongolian people. In the early '60s, the term, "Down syndrome" was officially adopted after Dr. John Langdon Down clinically described the syndrome (grouped common symptomology)... And, out of respect for the wishes of the Mongolian government who took offense to the term "Mongolian idiot", when referring to a person with Down syndrome. (I find it unbelievably offensive myself and, sadly, still run into some 'old school' folks who insist on referring to my children in this manner.)

From the 1930's to the 1960's, it was widely believed that people with Down syndrome were profoundly mentally retarded. As such, the common practice was to permanently institutionalize individuals with Down syndrome for on-going life-care. However, in the 1960's and '70s, various studies began to recognize that the earlier children with disabilities received special education, the better their outcomes. Through university programs, such children, including those with Down syndrome, began to receive early developmental and educational services. Amazingly, it wasn't until the 1990's that Early Intervention programs finally took hold universally. This began to erode the outdated thinking and practices such that tremendous gains in cognitive and physical development in people with Down syndrome were achieved.

Today, many still hold antiquated beliefs about how Down syndrome effects the individual. As I researched this history, I found information still circulating that touted necessary characteristics of the syndrome that do not apply to my sons (who certainly have Down syndrome). For instance, though mild to moderate mental retardation may occur, like other disabilities such as Cerebral Palsy, they are finding that not all people with Down syndrome are mentally retarded. (My sons were just declined services through OMRDD for not being "mentally retarded" based on their IQ scores.) Additionally, while nearly 80% of people with Down syndrome may suffer from heart defects, 20% do not. (My boys' hearts are defect-free and no different from yours or mine!) Not all people with Down syndrome have the simian crease and some "typically developing" people have one or more simian creases across their palms. (My sons have one each but their eye doctor has two and, no, he does NOT have Down syndrome... Which makes me wonder just how strongly it is related to the extra chromosomal material!) So you see, we are still a long way from fully understanding the cause and effects of this syndrome, and the capabilities of, and possibilities for, individuals who are afflicted.

It has taken nearly 80 years to realize that people with Down syndrome are truly viable members of our society. (And, some would argue, perhaps correctly, that we're still not there.) This is a sad historical fact we cannot change. But, to me, the most devastating aspect of this history is the institutionalization of this absolutely amazing population. My sons thrive on social interaction. I cannot imagine a worse thing you could do to them than to isolate them from others and strip them of their right to be participating members of our society. We must all do our part to ensure that it does not take another 80 years to foster greater acceptance of people with Down syndrome.

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