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Monday, 19 January 2015

Down Syndrome - the Scapegoat



"Down Syndrome, 
is often the scapegoat 
for other problems, 
easy to blame,  
and perfect to label."




When Miss Chloe was little (and not so little), I blamed every ailment on Down syndrome.
She has none of the big ugly health issues...like heart or bowel etc BUT, gee, she has a myriad of minor, very annoying, mind - messing ones!!

Let me explain, Miss Chloe has a stigmatism in one of her eyes and she is extremely long sighted. Originally, I just put this down to her having Ds. However I attended a conference where they said her condition was NOT common to people with Ds.  - Hmmm, I just didn't hear that bit... or maybe I didn't want to hear it ... :)

Anyway, Fast forward approx 5 years from this conference, and my other daughter
(without Ds.) is in year 12. She goes off to the optometrist, because she is having difficulties seeing the blackboard.


TURNS OUT SHE HAS
EXACTLY THE SAME CONDITION
AS MISS CHLOE!!!!!!!!
 

And has had
for many years....






Now guilt is not an emotion I have very often, but l sure went close on that day.
You see, with Miss Chloe, I was ALWAYS getting tests for one thing or another & was completely on top of every condition she had, or in my mind, ever condition she was
ever going to get.

BUT With my poor other "no Ds. daughter",
I had COMPLETELY dropped the ball!

it never entered my head that she my have sight or even any other issues...
cause for a good 10+ years only people with Ds have health issues.

The other realization about this issue was, they both inherited it from MY family, as they have different dads!!!

This was a real wake up call, and a stark reminder how important it is to care for ALL.

Chloe had sleep apnea and had her tonsils removed when she was 15yo. This is a rather common condition with people with Ds. So if you have a very tired & grumpy child in the morning, who sleeps loads of hours at night & snores,
get them to a sleep clinic

 
The change in her demeanor once the tonsils were removed was amazing, and she became a very pleasant human being.

Now comes the interesting thing...recently, I have been diagnosed with sleep apnea,
so I wonder whether I was giving Ds. just another bad wrap?


She also has shocking feet. I actually wish I had taught her to walk on her hands, the feet was such a drama!!!! This is also pretty common with people with Ds.
But I had my Mum visiting recently and Chloe was telling her about her feet -
and you guessed it MUM HAS EXACTLY THE SAME ISSUES!!!


I would love to say, her short & wide stature is because she has Ds.
and can get away with it - till I put her beside her Nanna on her Dads side.
They are 2 peas in a pod!


Now that is not to say, she doesn't have any issues directly linked to having Ds.  Her low muscle tone & occasional dislocated knees are a result of her low muscle tone. She can't wear thongs or Flip-Flops as our international friends call them, because the gap between her big toe & next one is too wide.

But I have to be very careful not to blame Down syndrome for every ailment she has.
I think I sometimes forget she has 46 family-of-origin chromosomes!!


Until next time,

www.suedymond.com





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