Tuesday, 19 August 2014

Living with Autism - A Parent's Perspective

Photo compliments of The Brilliant Assistant

Imagine a young, foreign, boy arrives at your door.

He comes from a remote village, from the edge of the world where they speak a language never before heard of. He doesn't seem to understand the language that you speak and you do not understand his.  As you can imagine, this would make communication difficult. In time, he seems to start to understand your language, but you still do not understand his. So he communicates by leading you around by the hand, "throwing" it towards what he wants.  If you still battle to understand him, he becomes, understandably, frustrated. This results in episodes of screaming and, often, what appears to be self-injurious behaviour - head-banging or head slapping. Often, talking to him and attempting to physically comfort him doesn't stop this from happening.

Being from a primitive place, he hasn't had to endure all of modern living's inventions. His senses seem to be especially heightened and he seems to battle to filter out noise, strong smells and bright lights. This, I would assume, has to be scary for him and make him very anxious, especially when he is tired.  I would equate it to always expecting someone to jump out from behind every corner, screaming at you. Sometimes I think he would appreciate a mute button on a remote control of life.

Most foods seem to feel really strange in his mouth.  He gags really easily when just looking at some foods.  So he has a very limited diet as a result - with lots of supplements crushed up and hidden in the foods that he will eat.  

It is no wonder, from the above, that he seems to love a very rigid routine.  I guess I would also like to know what to expect, moment to moment, in such a strange place.

He appears to battle a lot with sleep, often waking up for a three hour stretch each night. This is one of those great mysteries.  Does he just not need a lot of sleep or does he battle to relax enough to fall into a deep sleep?

He appears to be very interested in his fellow modern child, but seems unable to engage with the child. Perhaps the communication barrier is an issue or maybe he finds them unpredictable?  Maybe he just doesn't know how to interact with them?

So this is a just a small glimpse of what it is like for us, as parents, living with Autism.  It can be very challenging and emotionally exhausting but very rewarding too.  I can only imagine how hard it must be for Gabriel.  That is why we call him our Champion.

One day, I have no doubt, Gabriel will be able to post his own blog here, explaining what it is like for him to live with Autism.

Until then, we continue this journey together, as foreigners.

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