"He doesn't look like he has Down Syndrome."
I've received this comment several times in the past weeks since Hendrick's birth and diagnosis. Often, the comments come from people who know our situation but are acquaintances -- the cleaning lady, a mom in my daughter's class, a person from our previous church whom I don't see often, etc.
What I can't figure out is this: What are these people trying to say, and why are they even saying it? Just because he doesn't look like he has Down Syndrome (DS), does that negate his condition? Are they trying to make me feel better, as if "not looking like" DS is better? To be fair, I'm sure these people don't know what to say and are trying to be kind. But it puts me in a strange position. What, then, do I say?
Just once, I'd love to sarcastically say, "Well, Hallelujah! He doesn't have Down Syndrome, because you think he doesn't!" Mean spirited, I know. But this "he doesn't look like DS" comment makes me feel awkward and puts me in the position of having to interpret, comfort, and educate, perhaps at a time when I just want to be a mom, not a parent of a child whom others label.
The first time I heard this, I didn't know what to say. I think something along the lines of "Well..." and awkward silence. Now, I tend to say something like, "He looks a lot like Emily did when she was born." Definitely true, and this response certainly reinforces the "normalcy" of this child and all of his siblings.
But maybe I need to ask the questioner why he/she is asking. I'm glad that they are looking at my son, but what's wrong with looking like he has Down Syndrome? Maybe the next time I should say, "Yes, he does have DS, and doesn't he look great?"
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He is a beautiful boy and does look very much like E. Your blog looks great, and I look forward to reading more of your thoughts & feelings.
ReplyDeleteH has Down's Syndrome. But most importantly he has a loving and supportive family, circle of friends and heavenly Father who loves him exactly how he is.
People don't know what to say. People aren't "trained" to know what to say. And it's terrible to think that folks have to be trained, but, clearly, we as a society do not know how to function with folks who are "different."
ReplyDeleteI don't like labeling RJ2 as autistic, since that brings up certain things in people's heads--and they aren't all accurate. (And, then, sometimes it helps to say "she's on the spectrum" to explain her choice of behavior; doesn't take away all the guilt, however). Her doctor just told me about someone who is absolutely scared silly that her son is going to be autistic (at this point, he's perfectly healthy). That would just be the end for her if he had that diagnosis. Never mind the fact that autistic children may be very physically healthy.
When we don't know what we're talking about, we don't say the right things right! And that leaves us, as moms, with a decision to gracefully educate or gracefully move forward. I find myself sometimes thinking of responses to have at the ready.
There are so many things that you re-examine on this journey, as if the road didn't have enough twists and turns on its own. He does, definitely, make you stronger. Holding on to more and more of His wisdom.....
Love the blog, and I'm so glad to hear your 'voice'!