Now, I've never been one for competition. I didn't pursue my dream of becoming a famous actress because the scene was too competitive for me! I guess I've never really lived what others would consider a "normal life" so that my daily movements couldn't be compared to others. So no, I don't like comparison or competition.
And yet I find myself in a strange race at the moment. I can see it taking place all around me and I can feel myself being buffeted along to the start line. I'm gonna call it the "rainman" race.
And it's between parents of special needs children.
Firstly you've got the spectrum saga!
High functioning, low functioning, shite smearing, non verbal, low functioning communication..aspergers, autism, learning difficulties, special school, mainstream...fight fight fight! For some it's just not enough to accept your child is the way they are. They have to compare them to other to justify their own accounts of them. "your child is aspergers, well that's not autism" "your child can talk? Well they're not severe then" "they aren't bad enough for special school!" "if they're in mainstream that doesn't count as disabled"
I read another blog last week and the comments were a bitch fest of parents trying to 'out autism' each other! Those with severe children telling those with aspergers/high functioning that they had no right saying their children were disabled. Those with high functioning critising those with severe for feeling sad about their child's condition. Someone saying that unless your kids smear their own crap they weren't severe....it was utterly horrendous to read. Just tearing strips of each other and disrespecting the mans emotion fuelled blog for their own reassurances that they had it worse than anyone else.
The disability duel is a hard one to talk about. But in one corner you have the visible disabilities and in the other corner the none visible disorders. I'm gonna be brutally honest and say that at my worst times I've uttered those words. If only they had a visible disability...a wheel chair, physical signs, anything to make the judgement of others go away. I'm sure for those with a visible diagnosis this is really hard to understand but the judgement of the public doesn't rest on your shoulders. People don't question the parenting skills, the behaviour, the lack of social awareness of a child with visual pointers to a disability. You don't get crack pots claiming they can cure your child by stopping them eating bread! but then I'm sure you get other prejudices that I couldn't possibly understand.
And this is what I hold on to. I've said it before but your issues are all relative to your life, no one else's. How severe your child is is, in my humble opinion, relative to how well they function within your life style. It's not as basic as can they talk, make friends, be aggressive, control a meltdown, stim or any other measuring devise people chose to use. If you feel they are severe or they are high functioning...they are..in comparison to nothing else except your own feelings.That's it. It's pointless comparing them to anyone else, or trying to prove you have a carbon copy of rainman. Your child is your child. And though I think it does the disorder of aspergers a disservice to lump it in the same category as classic autism, as its classification as mild autism undermines the problems of living with the diagnosis who am I to say that I would cope any better with a child who is considered by others to be high functioning. I know parents living with far more aggression and violent outbursts than me from a child classed as high functioning. Dealing with a child who functions perfectly well at mainstream but loses it every time they come home.
Simply try to live your life and not compare your problems, your child's symptoms and the challenges you face daily to anyone else's. We could spend our lives apologizing for not having the bigger problems of others, critising those who are finding life hard, questioning peoples judgement or feeling about their own child or judging those who don't see things from your perspective. Forgive them. They are not living your life and you are not living there's. It is not your child, it is not your business. just like its not their business how you interpret your own situation.
We have enough to deal with trawling through our own crap, why compare your pile to anyone else's?!
Tuesday, 8 January 2013
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