"It looks like she has a mild case"
"You can hardly tell, it must be mild"
"She hardly looks affected at all"
These are actual comments I have heard from people I know or have met. Luckily, I am not too caught up on having people speak correctly about Down syndrome, because if I was I would have flown off the handle many, many times in the last 2 years.
In case you didn't know, these are ridiculous statements. Down syndrome doesn't work like that. It's like trying to assert that a woman has a mild case of pregnancy. It just doesn't happen that way.
I don't get upset at people because I know that they are trying to pay Phoenix and I a compliment. They are trying to say "wow, your kid is doing really great" or "your kid is so pretty", but they don't really know how. Part of me thinks that sometimes this is because people frequently aren't able to find the right words to describe what they want to say. Another part of me thinks the statements come from a very negative perception of DS. Because she could only be pretty if it was a mild case. Or she could only be bright and charming if it was a mild case.
I don't fault them for these perceptions. That was likely me 3 years ago. I wouldn't have put "smart" or "pretty" in the same sentence with "Down syndrome". But I do now.
I'm sure all parents do this, but I spent the better part of today looking at my child in wonder and admiring how charming, lovely and engaging she is. And reflecting on how much she improves my life and has helped to sharpen my focus. These are thoughts I never would have imagine myself having after our "why your kid is crappy" talk with the geneticist.
Here's the reality when it comes to DS. You either have DS or you don't.
There is no such thing as a mild case. Just like with regular kids, there is a wide variety or strengths and challenges that each child faces. Some kids with DS have more challenges, some have less. Some kids have more of the facial features, some have less - but there are no mild cases. All of these kids have about the most 'severe' case you can get because they have the extra chromosome in every one of their cells.
Phoenix has a 'severe' case of Down syndrome and look at how awesome she is doing.
Makes you think, doesn't it?