Tuesday, January 5, 2010

What Do You Say?

EDITOR'S NOTE: This post originally appeared on Days With Dylan on April 19, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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A couple of weeks ago I took Dylan to the pediatrician for a rash concern. This is our new pediatrician's office - you know - the one who specializes in kiddos with developmental delays? Well, I had kind of an awkward experience. The nurse who saw us is not Dylan's primary care physician, but rather was the only one available on such short notice. Anyway....throughout the entire visit, I was really just not getting great vibes from her. She was a know-it-all type and honestly, I could have done without her "extra jokey" personality. Yeah, so I wasn't exactly in the best mood as we had already had a long medical kind of day, but still. I was looking for a bit more professionalism, I suppose.

The nurse basically blew me off about the rash and told me to stop feeding Dylan peaches, change my detergent and change D's bath soap. Thank you very much.

Then, she looked up at me and said, "Hey. He doesn't have those simian creases.". I said, "Yes, I know. I don't know why. He just...yeah. I don't know.". She then proceeded to point out all of Dylan's "Down syndrome characteristics". "See his eyes? The shape? Then look how they are spaced far apart. Also, his ears are low. His arms are short and his hands are small and pudgy. Also the tone. Look...see?". She then picked up his arm and let it flop to the side and said, "Actually, his isn't bad at all. Usually Down syndrome kids (UGH!!) have much lower tone than that.".

I was standing there. So still. Looking at her. Probably with my mouth open, just....absolutely speechless.

But here is a censored version about what I was thinking: Honestly? How RUDE can you be? To stand there and pick apart my baby like that! This is my baby. My son.

Ugh. I am tearing up just thinking about it.

Then, she gave me a slip of paper to bring to the receptionist to check out. I looked at it and here is what it said:

Problem: Contact Dermatitis

Additional Problems: Down's

Down's. Down's? Are you kidding me? Down's? A. of all - it's not freaking Down's (it's Down, lady!!). And B. - we were not there because of Down syndrome. We were there because of a rash. And what does "Down's" have to do with that?! Sheesh.

Ok...whew. Anywhoo...

Fast forward to Friday.

I was on a walk with Cass and Dylan. We approached a woman who we see all of the time walking with her little dog. We stopped to chat for a bit. It was getting close to 11:30 so I told her that we had to get going as it was almost time for Dylan's PT lesson. She got a worried look on her face and said, "Oh no! Why? What happened?". I responded very casually (even though I was actually quite nervous as I still feel...what's the word...awkward, I guess, telling people that Dylan has Down syndrome) "Oh, nothing is wrong. I'm not sure if I've mentioned this to you before (I knew I hadn't), but Dylan has Down syndrome and...". I stopped for she was no longer listening. She had taken off her sunglasses, leaned in really close to Dylan's face, studied him for a few seconds and turned to me and said, "Huh. He doesn't look like a Down's child.".


So, what is the point of all of this rambling?

What I am wondering from all of you lovely ladies who are traveling this same path, is, what do you do or say when people blurt out...um...how shall I put this? Rude, ignorant and well...not so empathetic things? Do you just get used to it after a while? I know that I am overly sensitive as it is. And, I mean, I know that these people are not intentionally trying to hurt my (and Dylan's!) feelings. I do know that. And I also realize that part of the problem is that people simply do not know what to say. I try to think about what I would have said if someone told me that their baby had Down syndrome. I don't know what I would have said before having Dylan in my life. I really don't. But jeez, I would like to think that it would have been something a bit more...compassionate....than some of the things that I get now.

So, what do you say when you get the random, ignorant comment?

And...do you mind if I steal it for the next time?! : )