"Down Syndrome" a Euphemistic Stereotype

This is Lucas. He is 3 years old, he is my reality of what T21 means, and more importantly what it does not mean. He is healthy, funny, and smart. His most recent accomplishment is teaching himself all the states on his older brother's interactive map. (I am hoping to post a video clip, but my blogging skills are not quite that sophisticated yet!) If I told the doctors and specialists, much less myself, on the day of his birth that I expected such things they would have thought I was crazy.

Sadly, when Lucas was born and I learned of the Trisomy I was devastated. Anyone who has heard those words applied to their child knows the utter depth of pain, there is no need to describe it. After a couple of weeks and a few hard days in the hospital, Lucas was cleared to come home, thankfully none of the feared health related concerns were an issue for him. I will certainly write more in later blogs about our concerted effort to shape our own perceptions and those of of family and friends as this was a critical first step. We knew that we would move beyond the trauma, but if we "broke the news" to our family and friends in a sad and grieving way, they would not. That day, my husband Sean gave us the greatest gift we had ever received. While I for the most part was still in shock, Sean picked up the telephone and dialed every family member and friend he could. The message was clear: "We have a new beautiful baby who is very healthy. There is a possibility he may have Down Syndrome, but we can't wait for you to meet him." Sean put Down Syndrome in it's place; behind who Lucas was, behind his name, behind his health and beauty - right where it belonged.  As insignificant as this may seem, it was important to begin believing what he said.

I still couldn't shake the images the words "Down Syndrome" conjured up, the images that we all see when we hear the words. The history of the phrase is quite interesting. In the late 1800's Dr. Langdon Down ran An Asylum for idiots. He noticed that a certain group of people shared common features, basically they looked a certain way. We know the list; facial features, hair loss, obesity, open mouth with tongue thrust, on and on. He grouped these people together and named their "syndrome" after himself. It wasn't until 50 years ago that the mystery unraveled and the trisomy was discovered. Now we have a true diagnosis, it's time to abolish the old labels. "Down Syndrome" and the more disgusting "mongoloid" were born of the same era - an era in which people who looked a certain way were deemed hopeless by society, and were sentenced to life in an asylum which offered no hope, no love, and no intervention. I propose we move beyond stereotyping people by the way they look.

By understanding Trisomy 21 and how certain features can develop over time, we can intervene before they evidence themselves. That is why T21 is the way in which the trisomy will be referred to in this blog. Our children are not Langdon Down's children, they are not limited by what specialists and society expects of them today. They are smart and very able to learn, if we are willing to believe they can!