Sunday, 16 September 2012

Down's Syndrome

I read an article in The Sun (a paper I wouldn't give the honour of wiping my arse with) about a girl of 15 (now 19) who had a child with Down's Syndrome.  The main message is that she kept the child, who she still has to this day and how courageous it is.  I tend to agree and feel as a parent of a child with Down's Syndrome, it was nice that young parents like us get that sort of recognition (90% of babies with Down's Syndrome are aborted. 90%).  It is courageous and it is respectable, I don't care what anyone else thinks.

However, I do feel that this increases the fear people will have about Down's Syndrome.  The very fact that it is a courageous thing to do makes it seem that it is a really big deal.  To be perfectly honest, it isn't.  Yes, Down's Syndrome, like Autism, has a spectrum with varying degrees, but who really knows how their child will develop?  The majority of people who have had Down's Syndrome babies will tell you they are the best babies to have, especially if you are a new parent.  Why?  In my still fairly new experience I can confidently say that since we took Lillie home from the hospital she has slept all the way through the night.  Sure, a couple of times she woke up, but my wife and I rarely get an interrupted nights rest and I love to brag about that.  Fortunately this hasn't effected her development as we once feared, as it is common to have a baby screech at 2am, hungry for food.  Down's Syndrome people are also some of the most loyal, loving people you will ever know.  This of course, can make them vulnerable, and they are classed as such.

Now, my wife and I never planned on going to baby groups and clubs, unless we could see the benefit it would give Lillie.  We're not particularly coffee morning with strangers type of people, which isn't to say we're not friendly.  I personally don't like the idea of having clubs with parents who have Down's Syndrome children, although I do see and acknowledge the obvious benefits of this.  The ability to be able to ask questions to people who are in the same boat as you is invaluable, but I feel that this is also in dangerous territory of classification.  I don't want Lillie to be defined by her Down's.  I want Lillie to be defined by Lillie.  I took her to the doctors when she was a few months old, because she had a heavy cold (common with Down's) and we were concerned of any signs of a chest infection.  The Dr. was very nice and accommodating and I have no doubt in her ability, but my ears pricked when she called the Hospital to get her referred, as she referenced Lillie as a "Down's baby".  Now, I have no problem with the Dr. letting whoever she was speaking to know that my daughter has Down's, in fact I'd be worried if she didn't, but with two small words she seemed to eliminate my daughter's identity.  She is Lillie, not Down's baby.  Maybe I'm being picky and too defensive but I can see that bothering me for a while.  I'm not ashamed of it or embarrassed or even scared, but I don't want her to be pigeon holed either.  I want her to go to normal schools and to have a normal life.  Sure, if she needs extra help with her academia, or anything else for that matter, I will push to make sure she gets what she needs, but I can't help but fear that people in Lillie's shoes will always be looked at and judged by her Syndrome.  The same goes for Autism, Schizophrenia, Bipolar etc.  Treat the conditions with respect.  Do some research, but know that these are people.  Human beings who have as much right to live a normal life as you do.

 This wasn't intended to be a rant, and I'm not that cynical when it comes to people, but it just seemed to flow out.  If you made it this far, thanks for reading.  I'll post a Raw review tomorrow, follow me on twitter and eat your vegetables.

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