For some time now I've debated on writing more specific posts on Down syndrome partly because this blog was intended as a journal for our family. After a while things just got busy and life kept happening so quickly I barely had time to breath let alone post on the subject. Thankfully things have slowed down (and I'm finally caught up on my posts!) it's come back to me as something I ought to include, after all educating others about Down Syndrome is a part of our family. Isaac brought that to my attention. Whenever someone remarks on how cute Elias is Isaac will reply that he has Down Syndrome and that he loves him. It's sweet.
Down syndrome was so named because a doctor John Langdon Down was one of the first to describe extensively the physical attributes of those with the condition. I have to laugh a little because I recall how the social worker that I met in the hospital when we first received Eli's diagnosis said it was the worse name possible and it should be named 'Up Syndrome' because the children were so positive and always up. As you might guess I had a great inward rolling of eyes at the moment but I recognized that she was uncomfortable and did my best not to give a rude retort. I think it was her way of comforting me, a total stranger.
Some people are surprised when they hear of this of Eli and often say ,"Well he doesn't seem to have it all that bad." Down syndrome is literally an extra chromosome on the 21st pair (hence it is also known as trisomy 21) and it is reflected in every cell of the body. You either have it or you don't and only in extremely rare cases is it otherwise. I had one nurse remark that she thought it was a lucky thing that Elias didn't appear to be "Downs" so bad so perhaps people might be kinder to him. Ironically I was fearful of the exact opposite, that people wouldn't recognize it in him and have unreasonable expectations of him because of their ignorance.
Up until I had Elias I never found anything wrong with referring to someone being "Downs" but I see now a distinction in the wording. It is preferable to say a child who HAS Down Syndrome (shortened as DS) rather than a Down syndrome child. The condition does not define the child just as our inabilities do not define us.
Now I'm sure some of you reading this post are combing through your memories to see if you have ever said such things to me and cringing at it. Please do not worry, I don't offend easily. After all a little less than a year and a half ago I was ignorant of such things. And even if it slips in now and again don't fret too much - we are all learning. That being said I have at times felt the awkwardness of questions hanging in the air unsaid because someone was fearful I would take offense. Please feel free to ask me questions, I want people to understand those who deal with DS and most of all I want people to be able to distinguish my son apart from the condition. We are all more than what we appear to be outwardly thank heavens!
Here he is playing superman with his Baba. Love this little guy!