Saturday, February 18, 2012

Autism awareness ~ that burning question!


I have been dwelling on this post for a while now. It is not the most fascinating subject to spend time on. In fact, it is a subject that I don't really want to think about.... it is too damn depressing!

It is that very big scary question. The question that causes sleepless nights and that horrible little knot in the pit of my stomach. The question that rears its ugly head whenever I am planning a trip away from my child/children. The trip is two months away and already I am stressing..... I guess it wouldn't be so bad if we lived closer to family BUT we don't. Therefore I have to make a plan for the kids, just in case. I have to write a letter of wishes should it be needed. I have to leave numbers and instructions. I have to phone my family and tell them what to do, just in case! I imagine the worst case scenario and it plays inside my head. I visualise my family pulling together to collect my children.

This big bad question pops up at unexpected times.  It is brought to my attention at support group meetings. It peers over my shoulder as I get closer to my birthday. It's rolling, rumbling, gathering speed. Generally I can grab that horrid thought and push it into a corner of my mind. I hide it behind the worries of creaky limbs, a forgetful memory and menopause. I stick my head back into that sand.


But I have this one constant in my life,.....a living, breathing kid with special needs. A kid who is going to be dependent on me for the rest of his life. Can you see where I am heading here?

I am getting older and my boy is growing so fast. His body has lost that wibbly wobbly puppy fat and his limbs have become very long and lanky. The face is all spotty and there is dark hair above his top lip. His voice has deepened and the *noises* he emits are reminiscent of the low rumblings of a lion! As for the other parts of his body, let's not go there......

Oops, I got a little side tracked!

It is not the growing up that concerns me. In fact I am really enjoying the growing up part. My worrisome thoughts are......... What do I do when he is all grown up? What do I do when I wake up one morning and realise that I am very old? How the hell am I going to look after him then. This is South Africa, people! As far as I know, there is very little in the way of residential care for adults with classic autism. What does he do when I am no longer here?

What will happen to him when I die?

I was given my child's worse case scenario when he was a wee tot. Never did I think that we would be living the worse case scenario. I certainly didn't realise that time would pass so quickly! We need to start thinking about our son's future because it is knocking on our door today!

To finish off my post I am going to share this little bit of video footage. It has been many years since I last saw Nick climb a jungle gym and this clip really puts a smile on my face.

I have now packed away that *question* and tonight I will be dreaming of my boy with the long skinny pins climbing up that jungle gym and shuffling down the slide!

Night night x


~*~


16 comments:

  1. And now you have awaken the dragon...

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    1. Yes, and it is a very frightening dragon. I didn't realise how scary until I read Ghost Boy by Martin Pistorius.

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  2. it's difficult to be present in the moment sometimes. i think about eilidh's future - and niamh's too - and sometimes think that she may not see adulthood, that niamh will be an only child, or how they will cope when d & i are no longer here to look after them, will the burden on n be too much? i think about this in relation to having another child, to share this burden - my perceived burden - but cannot make a decision. we do need to think about the future but it's scary and sometimes incomprehensible...
    have just looked up ghost boy on amazon - looks like an amazing, inspirational read?

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  3. Dear ever hopeful mummy
    The future is scary and it comes around very quickly.
    Ghost Boy has touched my heart, I have been crying my way through Martin's story! :)
    x

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  4. We are a lot closer to that future and we have outlined our plans in our wills. (There, I said it.) Pamela is an adult and she is dependent in on us. However, she continues to make progress in her ability to communicate and her world is growing larger, not more narrow. So, we continue to work hard together and take things one day at a time.

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    1. Hi Tammy, the dreaded wills! We have also set up a trust for Nick. My stress is that I don't have any family in this country! Pamela's progress is wonderful to watch and read about. Her world is certainly growing larger... and what you do inspires me to work harder with Nick. As you say, one day at a time!

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  5. Replies
    1. K, it really is. What is helpful are the friends we make along the way. We can support each other! x

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    2. Of course, I just have to say ... CHECK OUT ALL THE REFERENCING AND DYNAMIC COMMUNICATION!!!!

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  6. Susan, you made me laugh :D
    I was wondering if anyone would notice that!!!!!
    I am still chuckling as I write this!

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  7. Oh I know I have to do a will too and with 2 kids with very different special needs and a semi-involved father I haven't a clue what to do. Except try to live a very long time x

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    1. Blue Sky, I think that we need to be prepared for anything and everything *just in case*. Thank goodness our kids have older siblings..... (Please tell Angel that I am very happy for her to contact me re Africa ~ she is going to have the time of her life in Tanzania).

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  8. OOh....sorry, my head is still in the sand on that one! Very, very scary thoughts indeed and these things DO need sorting I guess. Sigh....

    xx Jazzy

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    1. Sorry, Jazzy. :(
      I won't being up this subject again for a few more years!

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  9. I love the little video - thanks for sharing it!

    My God, thoughts about the future. It's terrifying. I try not to think too far ahead but sometimes I think - what if I fall ill and end up in hospital? what if I broke my leg? What then? I genuinely don't know what the answer is so I just ignore it! Not the best way of dealing with it I suppose.

    When Little H was little-er and I used to think about his future, I was scared to think about how I would lift him into bed when he was 30 and I was 60. I now realise that because of his condition I will be very lucky to be in a position to worry about him when he is 30. Or 20 even. You know what I mean. So I try to not think too far into the future in case it doesn't happen. But - if I'm lucky enough that it does, then I will be totally unprepared it seems. xxx

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    1. LittleMamma, I do know what you mean. Huge hugs from me x

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