The boy I lost

I can see some of you spitting with rage already from the title of this post, but you don't HAVE to read any further.  It is going to be a bit of a 'poor me' post.  But it's not just about me, it's about my whole family and what we have all lost due to aspergers, now called autism.  I believe that my son has lost the most of all.

If you're new here, it might help you to understand why I've been such a misery guts here on the blog during this long long summer.

My son, Angel and a friend.  I was a working Mum then too!
Look at that photo, observe the happy and screen-free teenagers having fun with a small boy on a beach, while their delighted Mum takes lots and lots of wonderful photos.  Smiley is laughing just out of shot somewhere.  And the boy?  Well he's smiling at the camera, he's fit, healthy, happy, outdoors and loving life.  That's all gone.  And I never expected it to happen.  Even after his diagnosis with aspergers at the age of 8, I was hopeful that our family life could continue, with the help of a bit of therapy.  After all I was able to manage it with a severely disabled daughter.  But autism is different.  And so this summer was mostly spent sweating in a hot city kitchen.  Unpleasant at the best of times, worse when you have the menopause to deal with as well.  Secondary school students in Ireland get 3 months off during the summer, which is a long time even when you're 52.  Yet I guess I will have to endure this for another 5 years at least, and by the time it's all over I will be too old and tired to care.

I hate myself for feeling like this when I know how many autism parents are dealing with far worse: regular violent destructive meltdowns that go on and on and on, scary seizures, smearing, and children who barely sleep or who bolt towards the nearest road or river as soon as your back is turned.

So I've been putting on my happy face for my kids, who seems to be fairly contented, and for my friends when I meet them, because there's nothing worse than being around someone who is negative all the time.  Anyway, trying to be happy for others makes me feel better.  In the moment at least.

If the teenagers go back to school as planned next week, then I will hopefully have time to sort out my still undiagnosed lung problem, and once that is fixed I will be able to exercise again which will improve my mood, as will getting back to counselling, and of course the yoga classes that have become one of the highlights of the school week.

And THEN I hope to write some more cheerful and entertaining stuff on here!

If you managed to wade through all this, I recommend that you now head over to Jazzygal for an inspirational post about staying positive while stuck in a hospital bed in extreme pain.    And if you come back here on Thursday I promise another positive post in the reasons to be cheerful series, and this time it will be about autism achievements this summer.  Just to balance things out...

19 comments:

  1. Rule #1 to all Autism (or whatever name they want to give it these days that helps them reduce therapy, SNAs etc) parents is NEVER compare yourself to another Autism parent who is dealing with far worse than you are. And I include myself in this advice, really I do. I am so sorry that you feel like this but I am glad you are writing about it and sharing your story. There are officials out there ho have the power to help and NEED to know this.

    Thanks for the mention. I wrote that post to cheer myself up and to ensure that I replaced the previous 'poor me I'm in SUCH pain' post that everyone who looked at Jazzygal would see!! We all need to share the stuff that really affects us. It helps. Besides if people don't want to read it then they don't have to.

    PLEASE, please look after you and that lung problem. NOW! xxxxxx

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    1. Waiting for a consultant appointment for the lung problem and having to do lots of exercise so that it will be really bad when I go in to see him/her! xxxx

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  2. Sounds like you've been having a bit of a rubbish time! Hugs!!
    Wow! 3 months off school is such a long time!! Mine have been off a month now and we're all going a bit crazy. lol x

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    1. There months is FAR too long! Hope things calm down for you too x

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  3. I know so little about autism, I don't feel qualified to comment, but just wanted to say that it must be lovely and also very hard to look back at a gorgeous photo like that. I hope you're doing OK and sounds like September will be a great fresh start xxx

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    1. Yep I'm crossing everything that September goes well... it's often a good month here xxx

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  4. Absolutely what Jazzy said...hard is hard. Comparing and contrasting-does nothing. I'm so sorry you've been having such a time of it..I'm hoping that all goes as planned for you-with the kids getting back into school next week-and that you get some time to yourself You are NOT alone! (((())))

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  5. Glad school will be back in session soon. Hugs.

    P.S. I sure get the "lost" sensation as well ...

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  6. I totally get this..... and I also feel that it is important to be real. I am thinking of you and counting down the days on your behalf until school goes back so that you get to have a bit of space. xx

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  7. Three months for a child with Asperger's is too long. Ive watched and felt helpless and completely useless as a mother, while my daughter has gone downhill again over the course of the three months. And I know people might say well you should insist on her leaving her room and you should insist on her partaking in family activities and you should insist on her spending time with you but those people don't have to watch as she physically hurts one of her siblings or as she nearly tears her own hair out because she cant handle the noise or as she starts scratching and cutting herself in frustration.
    Sorry, now Im hijacking your post, just know you're not alone, and don't compare, you'll only annoy yourself, Im learning that the hard way!!

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    1. You've described things perfectly and you haven't hijacked my post at all xx

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  8. I didn't realise you had been a misery guts and if you had, then sure you weren't doing anything wrong, I always enjoy these posts and also it can only be good to be honest and real. Hope you're OK and I really like that photo. x

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  9. I can relate so much and I hope September will bring a fresh start. Summer holidays are long, and it is hard, but I can only join the other and tell you not to compare yourself with other parents. We all have different difficulties, my son has mild autism and I often think I shouldn't complain because other families have it a lot worse, but it's wrong, it is hard for all of us and problems come in a different way and at different times in life. It is stressful , so I can only hope you feel better soon :-)

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    1. Fingers crossed that September will be better for all of us x

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    2. These type of posts are important, for you, because it's cathartic to offload the misery (with the best will in the world, sometimes the stress of raising disabled child/children gets to the best of us) and for your readers (readers like me) who after smiling for others all day find relief in hearing/reading someone in the same situation as them 'telling it how it is'!

      I hope you get your lung problems sorted soon

      Take care, Kimmie x

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