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Disabled? Me? Take a look at yourself!

Apparently my child is disabled. There are some days when I think about this 'diagnosis' and I laugh at how utterly absurd it sounds. How can my gorgeous, unique, loving, normal looking little boy be classed as disabled?

There are other days when I am so utterly drained by the end of the day that I draw some kind of relief that he is 'disabled'. Somehow it makes me feel slightly better. I am not just a failing mum, incapable of keeping my child under control, unable to command any level of respect and an utter failure at protecting my toddler or kids at the playcentre from his impulsive shoving or poking.

These are the days that are defined by Aspergers. These are the days when the constant demand for my attention takes me to breaking point before we have even left the house in the morning. These are the days when I am on tenterhooks every time I see Ben go near another person for fear of what he might say or worse what he might do. These are the days where I feel absolutely powerless to help Ben control his emotions or express the intensity of his emotions appropriately. These are the days when I wonder what on earth my neighbours are thinking as the noise levels of Ben's shouting and random noises reach a level and pitch that literally makes me want to scream at him.

But I can't do that. I can't scream and shout at him. I can't smack him. I can't take hold of him and shake some sense into him. I can't walk out.

The hardest thing about days like these is that noone else really sees them - so very few people really appreciate what it can be like or how anxious and frustrated Ben can become. Occasionally people may see small glimpses of that side of Ben but not the constancy or intensity of the behaviour and constant demands for my attention. In a way I'm glad, I want people to see the best side of him. I'm glad that people only tend to see the slightly cheeky and endearing qualities of Aspergers. They see his brilliantly witty comments, his very honest black & white perspective on life or at worse they might see glimpses of his very rigid sense of justice or his bossiness.

It could be very easy for me to wallow in how hard it can be for us as his parents to cope with his behaviours. But it's not really about us. I have to remind myself that Ben's disability is exactly that - HIS disability. He is only five years old and he has to live in a world that makes very little sense to the way his brain is wired. He has to negotiate his way through a social world full of nuances and unwritten rules of conduct. He has to cope with an extremely heightened sensory awareness where even a dripping tap can feel 'painful' to him. And while he is trying to cope, he is battling the problem of intensity of emotion and inability to express his frustrations appropriately. It is little wonder he sometimes feels the need to hit out, spit and shout.

It may be his disability but his life would be made a lot simpler if the 'normal, neural-typical, non-disabled' people around him weren't so socially ignorant. It breaks my heart when I watch Ben in the park as he starts to chat to an adult and this apparently mature person completely blanks him or worse looks at him like he is a freak of nature. It breaks my heart when he offers his opinion or knowledge in a situation and the 'non-disabled' recipient ignores him or worse laughs at him. I wish I could take these situations away from him; I wish I could protect him from the hurt and the confusion of this; I wish I could intercede for him. But he has to learn that sometimes people can be hurtful, sometimes people can be ignorant, sometimes people will misunderstand him, sometimes people are socially ignorant, sometimes life sucks. Sometimes when I see how certain adults respond to Ben I can't help but wonder who is the disabled one.

I can't always protect him from life but I can try to equip him to cope with life. I can try and build his self-esteem and help him to be confident in who he is. I can make sure that he knows that regardless of the unfairness of life, he is surrounded by people who love him and believe in him completely.

Please don't ever be that ignorant person that makes life for a child or even an adult with Aspergers or Autism even harder and more confusing that it already is.

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