5 things people often FORGET in their NDIS planning meeting
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I refuse to let Autism define me
Guest blogger Melinda Ewin says that her eldest son’s Autism has given her a “wonderful new perspective on life”.
My sons Angus and Declan are my absolute pride and joy, but other than being two handsome young men in their 20s they are chalk and cheese. Where Declan is emotional, Angus thinks literally. Where Declan seems to be able to form relationships at the drop of a hat, Angus simply doesn’t see the need.
The truth is that I don’t find being the parent of a child with Autism to be a problem, but maybe that’s just my way of looking at life – it’s a rollercoaster and you just do whatever it takes.
I was initially told, when Angus was two, that I was a neurotic mother. I was happy to have that diagnosis because it meant my child didn’t have a disability, but in the end a mother always knows.
That hit home, so I’ve spent my life rearranging the world around him so that he can have a better life. I pushed for his inclusion in a mainstream secondary school, despite the fact that they’d never had a child with his level of disability. They had to make a lot of changes but they embraced Angus, and the end result is that they have since opened their doors to children with high support needs. That makes me very proud.
There are certain ‘typical’ traits associated with Autism, but of course it manifests itself differently for different people. For Angus, who has high functioning Autism, he can experience sensory overload. I remember how, as a young school child, he would be driven crazy by the sound of a watch ticking in another child’s schoolbag outside the classroom. He has acute hearing and no ability to filter out invasive sounds. He also likes to have physical pressure – like being wrapped up tightly - to reassure him where his limbs are and will touch things to establish where his body is in relation to them.
As a mother, there have been times when it has been lonely. You lose friends, not so much because your child ‘has Autism’, but because his behaviour might have been a bit strange so you stop getting invited places, or you simply didn’t go because you knew he wouldn’t cope.
There are things you worry about, like the fact that he doesn’t seem to need relationships. He has friends, is a lovely person, has a great sense of humour and has even taught himself how to converse and have empathy, but his relationships are wholly pragmatic. If someone sends him a text message he won’t feel the need to respond. He weighs up whether it literally requires a response and the effort it would take him to respond and, more often than not, doesn’t bother. You’ll see long lists of unread messages on his mobile, so that’s my next quest.
One of the most enjoyable aspects of Angus’s Autism is his literal thinking. Recently he was asked how he ‘found’ an experience, but of course he began to describe how he had physically arrived at the location where the experience happened. It makes me laugh.
He’s starting to see the need for certain norms. That’s the wonderful thing about Autism - you might not recognise facial clues or social prompts in the way typically developed people do, but you can learn behaviour, even if it’s not instinctive. You mightn’t always get it right, but it’s a good start.
I always felt that I would have succeeded as a parent when my children showed kindness for no reason. One day we were at a disability event and I could hear this rustling – Angus got up, not to ‘shush’ it, but to help the lady in a wheelchair who was struggling to open a lolly. I thought, ‘yep, that’s that box ticked’.
A pre-planning booklet to help you to think about the supports you want and need – now and in the future – before meeting with your NDIA planner.
A practical, comprehensive guide to the NDIS, to help people understand the various components of the NDIS and how to access them.
A handy guide of NDIS FAQs and a glossary so you can familiarise yourself with NDIS language before your planning meeting.