I make an effort to be as positive as I can on this blog. I want to tell the truth but I also want to show that you can survive a whole host of things and still retain a sense of hope, humour and even your sanity.
But that doesn’t mean I should ignore or not touch on the tough things. And I know I don’t often delve into the hard stuff, it’s not really my style.
However, challenges are always being faced in the world of My Home Truths.
Nothing new nor earth-shattering, by any means. None of it hard to manage in isolation.
But they are always there – they never go away. Slowly eating away at my optimism, relentlessly challenging my determination to make things work. Always lurking.
And this week has shone a great big spotlight on them.
First, there was the A Current Affair autism forum on Monday night that brought all our struggles to the fore. I couldn’t speak, all I could do was nod and silently cry while I recognised and acknowledged everything those families recounted.
Second, we had Gilbert Bear’s learning support meeting, checking in with how he has been faring post-suspension.
I did well – I didn’t cry while in the meeting (a first for me!) and despite the necessary focus on the negatives, it ended up being largely a positive experience.
But, as always, these things remind me of the constant battle we face with autism.
I think it was a comment featured on ACA that autism never goes away, that the battle is everlasting, that’s what undid me.
Because it’s true. There’s no escape. And for all the positives you might come up with, there remains one inescapable fact – autism sucks.
It sucks to see your 6 year old daughter still soiling herself because she doesn’t recognise the urge to go to the toilet.
It sucks to console your son because he broke your laptop in a fit of uncontrollable rage with his bare hands.
It sucks to watch your daughter struggle with night terrors and with irrational fears and anxieties and have no way of soothing or helping her.
It sucks to know that your son is too scared to go out in his own backyard because he once saw a cat there which scared him witless.
It sucks to watch your baby daughter and already know the burden of care she will have to take on when she grows up.
It sucks to feel resentment against your kids because of the situation you are in even though it is certainly not their fault.
It sucks to be responsible for the decisions about care and therapy for your kids when you are no expert and have no confidence in your own decision making.
It sucks to have little chance of escape, to only have certain trusted family members who can provide brief chances of respite.
It sucks to not want to contemplate the future because it’s just too painful to contemplate.
As much as I want to write some positives, to assure you that there are good days as well as the bad, to comfort you with the knowledge that the joy of seeing the world in a completely different way goes a long way to offsetting this stuff, I won’t. Not today.
Because, sometimes the inescapable truth is that autism sucks.
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