I can't count the number of times I have been told that Archie "hardly even looks like he has Down syndrome." I have heard it said in many different ways. From, "Wow, I couldn't even tell he had Down syndrome when I first looked at him," to, "he really doesn't look very Down syndrome-y." (I kid you not, a mom at his very first school said those words.) I was so new to the world of parenting a child with Down syndrome that I had no idea how to interpret that. I thought about it for a long time. Was that supposed to make me feel good? It didn't. Was that something moms of kids with Down syndrome would like to hear? I didn't think so. I even asked friends, "Can you tell by looking at Archie that he has Down syndrome?" I could tell by their reactions that people thought it was a nice thing to say that he didn't look like he had "that much Down syndrome." Like they thought that if they said, "absolutely, he has all the features that come with Down syndrome, I definitely see it," it would be a negative or hurtful thing for me to hear.
The other day at a McDonald's playground (cause interesting stuff always goes down at McDonald's playgrounds), a woman asked me if Archie "was Downs." I told her that he does have Down syndrome. Then she said, "I thought so, but wasn't positive. He doesn't look that severe." I didn't have any good words. I usually don't in those situations. The clever words always come later. I knew that she wasn't trying to sound ignorant or be rude. In fact, it was clear that she was trying to be complimentary of my mildly Down syndromey-looking kid.
But here's the thing: Telling me that my child who has Down syndrome doesn't look like he has it "that much," or in whatever arrangement of words one can phrase that thought, is not a compliment. It implies that you think it would make me happy to know that my child looks less "wrong" than he could. That "it could be worse."
First of all, I happen to LOVE the physical features that come with the extra chromosome. I think they are beautiful and precious. I am not just saying that to try and romanticize them. And Archie does have all of those features. From his almond-shaped eyes to his little, low-set ears. His chubby little hands and extra wide feet with my most favorite feature: the extra space between his big toe and the rest of them. He has all the classic Down syndrome features and I wouldn't change a single one if I could.
I have absolutely no desire for my son to appear more "typical" or for him to look like he is "less disabled." Whatever it is you are trying to say. I really don't like it. I get that this is one of those times when the person making the comment is well-intentioned. And I always try to extend grace. If you want to say something about his appearance, tell me that he is beautiful, that you love his eyes. But don't tell me that you couldn't tell that he had Down syndrome at first glance.
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