Autism and Exhaustion

Let's get one thing straight first. I'm not blaming autism. I blame myself, my inability to cope, to get things completely right, my history, my situation, the menopause, the stress of bringing Smiley to a public pool for the first time in a year (with the help of some fabulous friends) and the general indifference of a world that seem unwilling or unable to make the accommodations that adults and children like my son badly need.

It was late on Thursday night. Another busy day lay ahead, another early start. I'd made it clear that I needed to sleep as soon as possible - I could barely keep my eyes open. But just as I was about to finish up, I was told that there would be a delay, of unknown length. The cause? Some of those reasons above and more. My son needed me.

I did not react well. The tiredness makes it all a bit blurry, but I do remember that the sense of injustice and frustration was too much to bear.

These days I try so hard to watch every word that I say, every expression on my face, I bottle up all the negative emotions, and I try to do it all on a few hours broken sleep.

I lost it, but even then, I've trained myself so well, that most of the stuff I said was okay, I just raised my voice, but I couldn't control how I felt. I left the room and ran. My subconscious was working overtime too. I did not run out of the house as I have done in the past (Angel was away).  I went to the kitchen and gave in to the urge to release all the pressure that was building up inside me.  Don't worry, no alcohol was involved, nothing got broken, and I was unobserved. But I ended up back where I was in July.

My actions calmed me down, but I spent the next 24 hours in a state of deep depression. Why can I not cope when others can? How do they do it?

Luckily Smiley slept until 7.55 on Saturday morning. I awoke and the tension and the headache was mostly gone. I looked out the window: it wasn't dark, the sun was actually shining, and I thought to myself "today is going to be a much better day".

And mostly, it was.





20 comments:

  1. Excellent Post <3 So well written and so true for the great many.xxx

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    1. Thanks so much Amanda and thanks once again for sharing too xx

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  2. I wish I could send you a team of helpers. I wish somene would. Lots of love xxxx

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    1. There's teams and teams needed for so many families! Thank you as ever for your support xxxx

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  3. Don't blame yourself, we all have days like that and more than once I felt guilty for shouting or getting frustrated when my son didn't understand something... It just happens... I'm not sure other parents cope, maybe they're just better at hiding their struggles? I mean, I actually admire you, I don't think I'd be able to cope as a single parent with 2 special needs kids. Hope you feel a bit better now :-)

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    1. Am definitely feeling better so far this week :-)

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  4. You can cope, you are coping admirably under what is a tonne of pressure; so much more than many other parents have to deal with. Hope you have good local support; but I know that doesn't help much in the actual home. Remember to be kind to yourself; you are doing an amazing job, it's not easy, there are huge downs and it may seem like there's not many ups, but they are there. Hugs x

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    1. Thanks Steph, I know how well you understand! x

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  5. You do amazing- far better than anyone else could in your situation - please dont blame yourself. J struggling a lot right now and I lose it big time with him saying horrible things I know i will regret even as the words come out my mouth. I shout and scream even though I know it is the worst thing to do. The only blessing is that he tends not to remember the detail of what I have said once the meltdown is over. I wish I had the self control to do what you described and get away from the situation. It is exhausting and I hope this week you will feel refreshed, energised and full of strength. Thinking of you xxx

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    1. So sorry that you're struggling at the moment, it is very hard for everyone xxx

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  6. Whatever makes you think that others cope any better? We only usually see each other's online 'game faces'. I don't usually write about those moments when I feel unable to go on a moment longer, or when I give up, lie down, curl up and leave it all, shamefully, up to my husband when he gets in from work 12 hours after he left home. Maybe I don't write about it because they are not unusual, or maybe just because because I feel embarrassed for failing, yet again. But you writing about it lets others know they aren't alone in feeling that way.
    I could say that you're doing as well as anyone else could be expected to in the circumstances, but really, it doesn't matter how anyone else manages - our challenges are all different and fluctuate daily. Comparison is futile.
    Lack of sleep is a form of torture so give yourself a break, be kind to yourself. Remember how amazing you must be to have got this far!

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    1. Thank you for putting it into perspective Tania - I know you face more challenges than most, and it's great to read how well everything is now working out. I also agree that comparison is futile, even though I do it all the time :)

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  7. I think most parents go through this while only having to deal with a fraction of what you have to. Be kind to yourself, you are amazing and your kids are so lucky to have you.

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    1. I know that you would do the same, as would any parent x

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  8. You're not alone in feeling like this. I have days (even weeks) where I don't feel I'm coping. I hide it as much as I can but its hard not to show my stress. Now that I'm in peri menopause it's getting harder to cope with the anxiety, low mood and now crushing lack of confidence. Some of it is due to my age and some of it is due to 17+ years of parenting SEN children and battling for support for them (still ongoing). it is true, you have to be kind to yourself and not be too self critical when you feel you've gone wrong. I'm terrible for being hard on myself (my perfectionist traits I think) but I've realised that being too hard on myself doesn't help my moods. I too can become easily exhausted (probably due to undiagnosed aspergers and/or ADD) but a day of not doing much can restore me when I feel I've overdone it.
    Debbie xx

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    1. Yes, mother nature got it all wrong when she organised that most mothers would be dealing with menopausal symptoms and adolescents at the same time.

      And I identify completely with what you say about self criticism and exhaustion xx

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  9. Don't be so hard on yourself-you're doing such an amazing job and on top of being a fantastic mum, you're a source of inspiration for so many of us living with special needs.

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    1. Thank you Aedin, it's lovely that you would say that x

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  10. Perhaps you should throw your toys more often, rather than let all the angst build up until you blow a fuse. Kids do push our boundaries and sometimes they need to know that life is not all about them. xx

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  11. I'm sorry you had to go through this again. But I agree with Bright Side above! You NEED to let your frustrations out sometimes. You cannot be expected to deal with all you're dealing with and bottle everything up all the time. As for others coping when you can't? Who are these people??!! I would think you are very much not alone in this. I know I have lost it in years gone by. I recall some horrendous moments, one that ended with me locking myself in a bathroom to cry. Silently. Or so I thought. I hope the deep depression was followed by some strength and hope :) ((xx))

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