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Tuesday, 12 March 2013

What does Autism change?

One of my favourite bloggers, over at Life With An Autistic Son, recently posed us autism folk a question.

How has having a child with autism changed you as a person? 

Or, phrased another way, does parenting a child with autism change who you are? Or does it change who you may have become?

To understand the changes, you need to know what came before. Before children I would have considered myself easy-going, a 'sit-on-the-fence' kind of person who liked a quiet life and hated confrontation. I was extremely lucky with my lot, and coasting along nicely, thank you very much. I wasn't even sure I wanted children originally - I never felt I had that particular maternal instinct, wasn't sure what I would do with children or how to 'handle' them. I had a great life, good jobs (yes, definitely more than one...), plenty of holidays and work trips abroad. Of course I can pick some of the points out of the list below, and say that everyone who becomes a parent would say they are now 'more tired' for example, but in that case you can read 'More tired....and then some'.

Now, I am:
  • A whole lot more knowledgeable about Special Needs, but still not even half way there
  • More stressed
  • More determined 
  • More patient 
  • More aware of others’ needs 
  • More flexible – but mostly with relation to our ASD girl’s needs 
  • More understanding 
  • More aware that you never know what problems other people/families are facing 
  • More tolerant 
  • More paranoid about what others are thinking 
  • More busy (I think 'busier' may be grammatically correct, but it didn't fit the list smiley emoticons )
  • More tired 
  • More emotional
 I am also: 
  • My child’s greatest advocate 
  • A fighter 
  • An expert form-filler 
  • Keen to spread understanding of autism in any way I can 
  • Less judgemental
  • Less bothered by what others think (I know, I know, that's contradictory) 
  • Often in meetings concerning my ASD girl 
  • Getting used to the rollercoaster that life has become 
  • Less likely to take time for myself 
  • Less likely to eat out in restaurants – something I'd have loved to do with my family 
  • Working with a company who provide help to families of children with ASD/ADHD 
  • Wanting to help other families who are realising their child is different 
  • A keeper of lots of files and paperwork that I never imagined I’d have 
  • Keenly aware of how autism affects the whole family, particularly siblings 
  • Extra especially keen to make sure I am doing the best job I can with my non-ASD child 
  • Constantly thinking about the future and about how we can make it the best it possibly can be for both our children 

My blog has been an outlet of thoughts and hopes from the start; a way of letting others know how it really is, a way of trying to increase understanding. I am fairly sure I'd never have started this blog without our diagnosis of autism, so that is another way in which I have changed. Just think of all those TV programmes I could have watched instead of sitting here typing away! I've found such a huge great support network through blogging though, and for that I'm very grateful.

6 comments:

  1. Wow that is a whole load of special qualities but I can see how you re right to claim them all.

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    Replies
    1. Gosh, I'd never thought of it like that - I really hope people don't think I'm trying to brag about how good I am?! Was more trying to convey how much I have to do, not necessarily that I'm doing it all well or any better than anyone else!

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  2. that is a really interesting question to ask ourselves. I sometimes wonder what our lives would be like if the boys were at school (we only homeschool because of the autism so i suppose it is similar in that sense). Since J's diagnosis, my eyes have really been opened to things in my own life and right now, i'm in a place of confusion again about how much of the way i feel about things could be down to the possiblity of my own ASD traits. That is so true about all the paperwork and form filling. When J was at school we spent virtually EVERY evening under piles of paperwork til the early hours of the morning just fighting for things that should have been in place for him to start with. You do such a great job about awareness raising - that is so important because with more understanding and less judging, hopefully things will get easier for our kids. xxx

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    Replies
    1. I guess everyone's lives could be full of 'what ifs'. They key is just to get on with what you have in the best way you can - and you certainly always sound like you are managing that! You almost make me want to try homeschooling (but not quite...)!

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  3. What a great post.
    I especially see it all the time in supermarkets - how people lose their patience with kids and they're hardly doing anything.

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    Replies
    1. Thank you :) I know. Our patience is often tested...! Staying calm is a skill you acquire - but up-front prevention is the most important idea.

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