Follow by Email

Saturday, March 23, 2013

Should've Known Better ...

Richard Marx would be pleased with that one I'm sure. 

But indeed I should've known better to get started with all this revelationary blogging because of course, just as Richard says in the song, I'm a prisoner to this pain, and my heart still aches ... FOR WHOM THO?

It aches for my little baby, that's who.  When the literal roll of the dice takes place and however the chromosomes come together to create the person that is YOU happens, it fucks up sometimes and the person that is created is inferior.  Now they call it having SPECIAL NEEDS which sounds nicer but almost makes it sound as though it's a good thing.  I guess that could be a BONE OF CONTENTION for some readers, especially those with SPECIAL NEEDS children, to suggest that there life is anything but good as after all it could reflect on your parenting if you said otherwise.  However no matter how hard you try to make their journey through life as comfortable and painless as possible there is that seed inside my mind which can easily expand and explode into frustration as to why she has to endure being locked inside her mind.

The other thing that pisses me off about Autism is the SPECTRUM of disorders.  When you get stuck next to some well meaning woman at the supermarket trying to tell you about the difficulties they're having with their son when the conversation indicated completely to me that he was way beyond the depths of despair that my little Sam is suffering.  You see, there's Autism, and then there's Autism.  And you'd all know what I mean by that wouldn't you?

I think it makes it easier for the government to bundle us all into one neat little group.  Then statistically the OK ones get better so that it looks like we're all doing a good job of improving the outcomes for these children.  They can point to pretty coloured charts and say "here we are, this was what it looked like last year and now look only after 12 months oh joy what a smashing job you're all doing.  Why don't you go down the pub and get pissed?"  And they pat themselves on the back and say, yes DARN GOOD JOB let's fuck off down the pub.  But sadly, the ones we're the lights on but clearly there's no one about, well their outcomes remain unchanged.  People don't want stats that REMAIN CONSTANT!  They want stats that go UP AND UP AND UP!  PROGRESS PEOPLE. -> THE WAY FORWARD IS MORE AND UP AND HIGHER!  As far as many people in business and government are concerned.  Why?  Because it is their standard of living and what sized car their kids are gonna drive and how many beach houses they've got and how many prostitutes they can buy when their wives are banging the butcher, that sort of thing.

I've digressed.  Samantha is far from a vegetable, by the way.  She's cunning and hides from us all.  And she bangs her head and screams blood curdling cries that are enough to wake the dead in the middle of the night.  But she's the cutest thing when she's being tickled and she loves a good hug when she's in the mood too.  But it's hardly a life that I'd write home about or aspire to live or anything like that.  On the contrary, it's a totally fucked life to lead.  And you need constant supervision and care throughout your ENTIRE life from start to finish.

Once again readers, I understand that I am not the only one facing these sorts of situations.  But just be aware that when you procreate, currently it's the LUCK OF THE DRAW until Science is able to intervene and prevent these sad lives from having to be lead.  But first of all society has to come to terms with human modelling of chromosomes.  Destiny in a test tube.  TESTING TESTING ... 1 2 3 ....

Well you should've known better if you thought I was just gonna fucking sit around 'til I'm dead and watch her waste away in a nursing home hu?

1 comment:

  1. i pray that a cure can be found so that u and Sam can be closer than u already are and share happy times for rest of time xxx.
    wish i knew more about Autism to help but i don't, i can only offer u my eternal love and devotion...know its not enough and u need more than that...sometimes wish id never seen ur pic or got to know hurts not being able to help someone i've come to care about...and im sure id love Sam as much as u do (James too) if we'd ever had chance to meet.
    wishing u always dreams come true and my love forever <3 xx