A message from Mom: As I promised when I took over Sarah's blog, I would like to address another question, actually a series of questions that were recently emailed to us: "This is something I've been wondering almost from the beginning: do older kids and adults with Ds know they have Ds? I mean, I guess I assume that they do, but what does it mean to them? What does it mean to Sarah? Does she understand her condition? How does she feel about it? How and when does a parent tell their child that they have Ds?"
What great questions. I will share a little story. I would also like to ask other readers what their experience has been because, I am sure each family has a different one.
The truth is, I do not ever remember sitting Sarah down and saying "Sarah, you have Down syndrome." The fact is for the first ten years of Sarah' s life, we focused more on her being medically fragile, than we did on the Ds, even though many of her medical issues were likely related to having Down syndrome. We had her in so many community activities: sports, dance, Girl Scouts and after school programs, as well as being fully included in the classroom from K-6, that I'm not sure she felt that much different in her younger years.
The first time I remember having a serious conversation with her was the evening we watched the Lifetime movie: The Memory Keeper's Daughter, about a year ago (she was 18 at the time). She was so saddened that the nurse took the baby away and kept asking why. I tried to tell Sarah in a round about way that it was because they thought they couldn't handle taking care of her. She looked at me with her famous puppy dog eyes and frown expression and said "Oh Please, just because she has Down syndrome like me?" It sorta rocked me for a moment because I did not realize that she had that strong of an understanding to make that connection. So I asked her what she thought about having Down syndrome and she said, "whatever."
A few months later we were at our condo in Columbus and had gone to the local Kroger grocery store. There are a few adults that work there with Down syndrome but I have never said anything about it to Sarah(although I do find myself purposely getting in their line even if it is longer). So on this day, I had been reading a magazine waiting my turn and then started unloading the food from the cart. All of a sudden I realize that Sarah is not with me. Normally I would not panic, but this is a huge store and Sarah does not come here very often. So I start the frantic head darting in every direction only a mom can do, when I see her over talking to this young man. Actually, as I watch more closely they are doing the teenage flirt thing. Hmm.....
After he bags our groceries and puts them in our cart, I smile and say goodbye. I am almost at the door and turn around to make sure Sarah is with me. She is still over talking to this guy. Now, I am getting a little irritated, so I yell: "C'mon Sarah." The two of them then do this thing with their fists and hands that is some symbolic goodbye they probably picked up from TV. They both knew it, very well I might add. When we get to the car, I said to Sarah, "So it looks like you have a new boyfriend." Indignantly she says to me, " Mom, he is just a friend, and if you haven't noticed he has Down syndrome just like me. We stick together, ya know." And with that, she put her headphones on and turned on her Ipod, which meant she had tuned me out.
I smiled as I drove off. It really was a cute thing to watch. But more importantly, she told me so many things that day. First, that she is just like any other teenager: when she finds a man attractive she can go into the preying mode of flirtation. Yet, indirectly she also told me that she knows she is somehow different, and she seeks out those that are like her, but hey mom it's no big deal.