My experience as a Carer in Ireland By G.Conlon
I am a 38 year old mother of four from Dublin.
My darling son will be ten years old in the coming months, we started his AON process when he was three years old. Still no services till this date!
My son is on the Autism spectrum. He is the most beautiful, quick, cheeky, charming little character that you could ever meet but by god has he tested my endurance and kept me on my feet.
He would only sleep for two hours a night.
Getting dressed was a full on fight.
Frustration and distraction always there.
I walk on eggshells, hyper aware.
I know what will trigger him.
What he likes or what he hates.
Most of all I've learned to tell when he just needs hugs.
He can't communicate well.
What's the difference between a tantrum and a meltdown.
To get to his level to see, what's around?
How to slow the pace and break it down.
I made it through the potty training days,
Eventually teaching him to aim.
I fought for years to get him schooled
A break for both him and me, a safe space where he can be all he can be.
I've taught myself to use PECS, little pictures to help him communicate.
I've learned Lamh, some basic words and more
But it can be a lot to remember when you haven't slept yet and it's now half four.
I stood my ground and met his needs without the right people supporting me.
With every truth along the way, he was being failed every day.
My health declined and I got sick, which left me in an awful mist.
His father had to take the reigns.
Give up employment to be engaged.
To give my body the chance to heal and mend, to find the strength to fight again.
We have four children not just the one and the autistic journey effects everyone.
No matter how much people emphasise, you just don't know until you live this life.
Now don't get me wrong with what I saying, this is my life and I'm not complaining.
But when the HSE came back to me after all this time and offered to train me up to know my child.....
Life experience doesn't count it seems,
Talk about offending me.
All the supports that they can give me, I've already found in the autistic community.
I can't believe they are that detached to think I could be happy with that!
My son needed early intervention.
Now at ten years old with school age team but still no rush, no priority.
I have taken enough of all their talk and huff and puff, with all this we care lark
When it can be seen quiet clear even in the dark,
Just how obvious their mismanagement has been.
Wasted resources being the start!
They have crossed a line this time, personally insulted me.
To make me feel like I'm the one who hasn't done what's been needed to be done.
I'm tired of being told I'm right
But there's nothing they can do to ease our plight.
So I have decided to use my words
To advocate, to share my world and what I've learned.
And the right to stand proud.
So here I am and here I'll shout until they understand what this is all about.
It should never be about money to do what's right.
And we will win if we unite.
Together we can take this fight.
I'm sick of talking, not to be heard.
I'm sick of listening, like they care.
I'm sick and tired of just getting by when behind the scenes I'm fighting tight.
So I've decided to make a FUSS ,
To scream and shout to give them a push
To wake them up ,
WHAT ABOUT US !!