how not to compliment my son's appearance

Thursday, September 25, 2014

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 syndromey". (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..", that 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. 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: 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.

Thanks for letting me share, 


  1. One word comes to mind when I see Archie: exotic. Perfectly, beautifully exotic. He's gorgeous!

  2. YES! Exactly! Hear the same about our little guy (adopted from Ethiopia.) Wouldn't change a thing about him! Cutest.thing.ever!!!

  3. P.S. your son is beautiful.....that said, some people don't even want anyone to admire physical beauty....whether it is loving the features of down syndrome or loving that his features of down syndrome are mild or admiring the beauty of a girl. None of us should assume what others are thinking and try to be open minded and gracious as you stated.

  4. Wow, so sorry to hear you have to put up with those comments when your child is so young. My daughter is 23 years old with trisomy 21. It wasn't until her junior college days that I have had to encounter those kind of rude comments coming home. It never happened when she was with peers in non special ed classes throughout schooling through 12 th grade. I even remember hearing a classmate of hers in first grade (in the good old days when I could volunteer) telling me "she had something but it was all gone now". Yes, she received a regular diploma and just wanted to attend college like other peers. She has done well in regular classes at the junior college thanks to great "regular" class professors. But she doesn't appreciate the comments she has received from classmates in a class for those with learning disabilities. In the future I will discourage her from taking another class like that due to the hurtful comments. She came home feeling very hurt telling me someone called her "retarded" and another time when someone called her the Down syndrome girl. No one before ever referred to her that way. I told her she is the smart girl who has always been the smart girl who tries very hard and they only are calling her names because they feel badly about themselves. Tearing someone else down is there way of making themself feel better but that really doens't make them feel better. Maybe they want everyone to feel badly about themselves but that is not the way I choose to live life each day and not the way I have taught my daughter. Thanks for listening and God bless.