Sunday, 6 January 2013

The Invisible Disability



When I started this blog I wasn't sure which direction to take it. I have a few other blogs, one about my baby, one about my cakes and another more personal one about my depression. Now this blog is becoming established and I've decided to use it to take over from my baby blog. One of the things I used to post about regularly there were my children's disabilities so I have decided to re-blog a few posts from there as an introduction so I can continue writing about this here.
This is a post I wrote last August about Star's autism.
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I don't tell everyone that we meet that Star has autism. Many of her friends and their mum's at school are unaware. At the age of 7 (almost) we can get away with it. I tried to get away with it much longer with her older brother but things turned really bad when he was 12 years old I don't want to make the same mistake.
Star is verbal, intelligent and looks normal. Occasionally she will glaze over and become distant and it takes a while to get through to her but most people will take no notice. Sometimes she gets a little over excited and an a little flappy, not an unusual amount though and again, most people will take no notice. She is un co-ordinated and clumsy, she has a strange gait when walking and running and sometimes performs strange actions. At 7 yrs this is starting to be a little more noticeable but we are still getting away with it.
Star talks out of turn, ignores people, repeats what you say, talks about what she wants to talk about and doesn't really interact, talks incessantly about the things that interest her, makes funny noises all of which you can get away with at 7.
When do we stop getting away with it? When does it become apparent that Star can't help these behaviours and is not just immature. Sadly, I don't think it will be much longer and we have to start thinking about how to deal with it, and make things easier for her.
Star's older brother didn't have any physical problems but Star also has Hypermobility Syndrome and weak core muscles. These contribute to the strange way she walks and talks but also affect simple climbing ability. This summer our visits to the park have involved Star's 5 yr old sister and 2 year old brother doing everything by themselves, while I have had to help Star with climbing things. One park in particular has a slide/climbing frame that you can only access by climbing up a ramp holding on to a rope. While the other children, big and small, were zooming up with ease, Star just couldn't manage it and I had to give her a shove. Then yesterday we were at an event with face painting and the children were sitting on high stools to have their faces done. Star could not climb on to the chair and the lady who was about to paint her seemed shocked. I helped her up and went back to help her down afterwards.
So, although Star may not have the traits of a severely autistic child, and doesn't look obviously disabled, she does draw attention to herself.
Do we carry on as though this is all normal? My son suffered terrible bullying and even now I worry if he goes out alone (which he doesn't do very often.) How am I going to make things different for Star?

1 comment:

  1. you are spot on when you describe it as an invisible disability. Sometimes people who have been really judgemental towards J have suddenly become really sympathetic and understanding when i have explained about his ASD (not always though!). It is so hard to know how to do the right thing - especially because day to day asd can be so variable and whenever i fear the worst, J often copes well and when i think things will go smoothly - they don't. so it is hard to know what to do - but i know we all do whatever we think best at the time and hope we are making the right decisions. big hugs. xxx

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