Hearing Test

One of the lovely culprits of Ds is a high risk for hearing loss. Therefore, we are instructed to get LB's hearing tested every 6 months.

Test one in the NICU went swimmingly! Mom and I jumped for joy upon the results. The second test was this past week. Skipping to the results, she's fine. And then the BUT comes in....

Our visit was through FS (those unfamiliar, it's the service provider here in IN), so I made the assumption the tech/nurse/hearing "specialist" would be familiar with people with disabilities or at least the terminology.

You know what they say about assuming....

This lady almost got punched. Had the shock of her comment and the fact that my daughter was in my arms not been a factor, oh and she was preggers, she would've been on the flo! Yip, Fairdale, KY is still in me!!

Let me break it down for ya and you tell me what you'd have done...
Her: is there a reason for her test today?
Me: it's past due for her 6 month hearing test
Her: is there a genetic concern?
Me: she has down syndrome
Her: ooohhh!! Well you don't look Downsey! You're so cute!
Me: (mouth on the floor)

To anyone that doesn't know, this is a very offensive comment. Downsey is quite offensive alone but to add in that she's cute - which I took as, having prominent Ds features, (she thinks) you wouldn't be cute.

I continued with the appointment and never said anything. Looking back on it, I wish I would've. It was a prime educational moment. My time to let her know she was wrong. I brought it up to Leightons PT as I have corrected her in the past. She said its good to hear. However the OT said its sad that they do that because they are taught in school not to speak in this manner.

It's all about conditioning and education. I don't get offended when people use the wrong terms because its not malicious intent. It's what they have learned over time.

I do see generational differences, and I do see a wide array of terms used. However the media is probably the biggest culprit. I have a google alert set up for Ds. Some items I cringe to see because it doesn't filter negative content, which is usually some numbskull of a kid that doesn't get hugged enough. But the larger media outlets and the publications that don't take the time to teach or learn on their own, the correct terminology before writing about it. Aren't they supposed to validate sources?

It's a long battle ahead but one I am now prepared to fight for the remainder if my existence. Guess the big guy thought I needed a purpose.

Nonetheless, LB is showing "slight" signs of hearing loss but they say it's normal for kids her age. The way the test was given, even I didn't pass. I take it with a grain of salt.

Until next time...
Shona

Comments

  1. Russell has yet to pass a hearing test just because he doesn't always co-operate, but it never worries me because I am positive he can hear every single thing!

    Oh and the comment, ug, how disgusting. I find it really insulting. I hate the word "downsy", it's not cute or endearing...And from day one I have hated it when people have said to me how cute Russell is and that he doesn't even look like he has Down syndrome...First off, that is not a compliment, it is saying people with Ds are not cute, and secondly I am well aware that my son does in fact look like he has Down syndrome, and people don't need to try to make me feel better by saying he doesn't look like it...*sigh*...Some people just suck! lol

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  2. I couldn't agree more Jenny! So true!

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