Autism Sucks

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.

AUTISM SUCKS - www.myhometruths.com

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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15 Responses

  1. Kate Sins says:

    Oh Kirsty, I don’t know what to say, except I’m listening and reading and sending you virtual hugs. I wish the government did more to provide support. I wish there was some way to provide more respite. I wish that it didn’t suck so much. I wish there was a way to make it easier.
    Kate Sins recently posted..The path to diagnosis: part 1

    • Kirsty says:

      Thanks Kate. There really is nothing to say, it what it is. Most days I can cope with it, and others are harder but you still march on. I feel better for getting it out there but I do hope that I don’t have to write too many of those negative type posts in future…thanks so much for your support, it means a lot to me.

  2. Marita says:

    Big hugs Kirsty. We’ve had a challenging week ourselves and I’ve had a few “I don’t want to do this anymore” moments. Thankfully a surprise block of choccie arrived this afternoon when it was most needed and I had a good appointment with the paediatrician. So a positive end to what was a bit of a tense week.
    Marita recently posted..Things I Know

    • Kirsty says:

      I think we all have those moments Marita – after all we are all human and can only take so much before we have to let it all out somehow. Surprise block of chocolates always make things feel better – it’s those chocolate fuelled endorphins, you know! And having great specialists you can trust are worth their weight in gold – as I wrote I am no expert and I rely heavily on their recommendations for my kids. Hope this week is better for you too!

  3. Lee says:

    You have every right to feel pissed off, fearful, sad and frustrated Kirsty. Life is hard and your life is way harder than most. You are awesome and you can do it. You know your kids best. xx
    Lee recently posted..Gluten free Zucchini Slice

    • Kirsty says:

      Lee, thanks so much for your lovely comment. It can be hard but it can be rewarding as well. I don’t normally focus so solely on the negative but sometimes that’s all I can see. Thankfully I feel better for getting it out there – your lovely and supportive words have also helped me feel more positive. Thank you.

  4. Gawee says:

    Hey Kirsty. Never ever feel bad about not writing an ‘up’ post. We’re all allowed our ‘lower’ moments and you my dear are certainly allowed these moments. Having said that though, If I had seen you at work today you would have received a hug whether you like it or not! Go on, run for the hills…LOL. In all seriousness thank you for your honesty, it’s what brings me back to your blog again and again and also gives me the reality check that I ocasionally need (Wayne will agree here I’m sure). Hang in there, you’re doing a marvelous job. G.
    Gawee recently posted..A man-child & space birds

    • Kirsty says:

      Thanks Gary! A hug would have certainly been welcome that day…I feel better now but as you say we all have our down days and we are allowed to feel low. I just don’t like dwelling on that stuff normally! Thanks too for your kind words about my blog – they mean more than you could ever know.

  5. Hi Kirsty,
    I wish I could say I understand what you’re going through, but I don’t. Each of those issues would be tough to manage in isolation, but to have to deal with them constantly, day-to-day requires a special kind of person. Because you are a special person. You still love your kids, you still do everything you can to make things better for them. You fight for them.
    I wonder whether you’re getting some counselling for yourself? Whether you remember to take a little time for yourself? Even five minutes to savour your cuppa, or a five minutes alone in the backyard? Every minute counts…

    Thanks for linking up this week 🙂
    Dorothy @ Singular Insanity recently posted..Getting conference-ready: puzzling out handles, avatars and pseudonyms

    • Kirsty says:

      Thanks for your thoughts Dorothy.

      I must admit looking after myself does not come naturally to me, hence I always have some sort of stress-related health issue going on (this week I have cold sores – desperately trying to be rid of them before DPCON on Friday!). I am trying to keep an eye on my mental health, having suffered depression in the past, but sometimes prevention is the best cure.

      Because you are right, every minute does count.

  6. Tracey says:

    Absolutely it sucks, doesn’t it? Of course there’s great things about our children but we live through both good and bad, and the bad really bites. xx
    Tracey recently posted..A Challenge, Accepted

    • Kirsty says:

      That’s so true Tracey. I really don’t like to dwell on the bad but sometimes that’s all you can see. I feel much better for writing it out though – thanks for taking the time to share your thoughts!

  7. Maxabella says:

    It’s so hard to read this and not be able to do anything to help. I can only reach out through the screen and give you a hug and say that I know how awful it is to feel despair. To feel like you can’t go on, even though you must. I admire your positivity so much, but sometimes positivity actually needs a recharge with negativity. Embrace all the feelings, because they are what’s real and real keeps us grounded. xxx

  8. Hi Kirsty,
    Never feel bad for writing the truth, no matter how negative it might be. It’s through raw, honest posts like this that we all feel connected.

  9. Emily says:

    Oh, Kirsty. Hugs. Thank you for sharing this. Yes, it sucks. And these words no doubt reassured some parents that sometimes it’s okay to hate that it sucks, to be angry at suckiness. xx

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