I really appreciate the outpouring of support that came my way after some of the more vitriolic comments from my post regarding stereotypes and Down syndrome. I am grateful for those of you that have been friends with me – virtually or in person – real and true enough to hang in there and work with me through the semantics of what I was trying to get to.
I was especially grateful for the voices that were chiming in from the moms of older kids. The post, after all, had a lot to do with that, wondering why we don’t hear as much from those moms. I deeply appreciate their perspective – like from Jean, Gary and Walkersvillemom.
Walkersvillemom was the one that led me to my AHA!! moment, actually getting to the heart of what I was struggling over, when she said,
…as for my two cents on the topic- the definition of syndrome (from Google) is: “a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms”. In this case, there are going to be similar characteristics (not necessarily the medical-ized word “symptoms”). Does that mean they are “stereotypes?”
It is a SYNDROME!! We are talking about a SYNDROME! Which is to say, a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms.
I was fumbling over words and the thing that came to my mind was “stereotypes” – but that’s not it at all because we are actually talking about a SYNDROME, and a syndrome that we honestly don’t know very much about.
We do not know how exactly Down syndrome is expressed in our children. We don’t know how anything will unfold, we do know that it WILL, because they have an actual syndrome. But we don’t know HOW.
We don’t know the why’s and wherefore’s. We notice that some of our kids cross their ankles a certain way or tend to be __________(fill in the blank), but we do not know any of this for certain: that it will happen or that it is necessarily something that is specifically caused by having an extra copy of the 21st chromosome.
So what I am saying is that as I notice things develop with Moxie, as I notice her changing or certain behaviors that are associated with people with Down syndrome, I want very much to talk about it. I want to talk with others about it, I want to know more.
This really dovetails with Becca’s recent post on research and One21.
Did you read it? Okay, so, in brief, One21 is about setting up a biobank for Down syndrome research. Dr. Costa, (- a powerhouse of research and the father of a young adult with Down syndrome) explains why a biobank is critical:
(warning: the captions are scattered)
At this point, the One21 campaign is trying to spread awareness – you can sign up for more information and to stay in the loop as more develops. I did. This is definitely something I would like to be a part of.
It gets to the core of what I was trying to say: I want to understand my child better. I want to understand the commonalities between people with Down syndrome. I want to understand the “syndrome” part of Down “syndrome”.
Since we know so little, I think research will help us get there.
If you are with this, it’d be wonderful if you can help spread the word. Join One21 and invite others to join as well.
Like their bi-line says, “A community united can achieve great things.”
And we can.
We can achieve great things.
Indeed, isn’t it as Margaret Mead says? “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”