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Is it bad to feel Special?



You know how you try not to be that kind of special? It's not that you want to be normal but being able to pass for normal usually makes life so much easier.

Far, far easier to stifle down your meltdown than run out crying and slapping the doors until they open; better to keep quiet than give in to the little voice in your head that desperately wants to tell Dave about his hair; terrible to find yourself making That Face because Liz has started explaining Windows to you again; awful to realise you have been making your own repetitive noise for the last five minutes to drown out the noise of your co-workers talking.

Yes, being that kind of special is for when you can't help it - as long as you can help it, you tend to keep it under wraps until you're somewhere safe. Then, like a tight belt, it can all hang out and you collapse and forget the rest of the world.

How galling then, to find myself having to pass for normal lately and need to put up with people discussing RT Teen with me, as if he is Special.

I've been trying to set up work experience for RT and have found a really great place where he can explore his Art and help other people with theirs. It's volunteering so no 'proper' job, but he's going to be learning all kinds of things, including how to deal with other people.

He does need some help. He has coping issues, he finds people difficult and stressful sometimes, he finds life the same, he needs guidance and care and someone who can tell him when to just quit it, if he swims in the cool sea of honesty too much.

But how disheartening to have him discussed like he is Special. Not as the eccentric academic who finds life a little perplexing, but as someone who is on the spectrum and needs help because people like him need help; 'they' need support, 'they' need guidance.

I know 'they' do, I know we do. I know I could have conducted each of these interviews and phone calls from the starting point of, 'Myself and my son are both on the autistic spectrum'. But would it have been the same?

How would the conversations have gone if I didn't do grown-up? After all, if you're on the spectrum and admit it in a professional setting, you immediately become one of the people needing help. It's a metamorphosis visible to the naked eye, seen in the face-change, the eye-flicker, the unconscious movements of the hands as people take longer to choose their words, either for fear of causing offence or because they want you to be able to understand what they are talking about.

Instead I have been the mother of a son on the spectrum and, in looking for help, have endured well-meaning 'they's and kindly comments on soft achievements and gentle results. The only meeting where he was fully discussed as himself was with an adviser who knew RT years ago and takes everyone at face value - Joan, you are a star!

My son is an academic with an acerbic style of honesty; he is an artist who transforms illustrations into digital images to an industry standard; he is an eccentric person who revels in meeting other eccentric people. He is very special, but is he Special in that other way?

Maybe it's not so much the wrongness of this word, but the rightness which bothers me? Am I asking too much for the world to view him as a highly-intelligent, creative person who needs a little extra help? Does his place on the spectrum mean he is automatically Special? Am I more fearful of the label than what it entails, for him and for me?

I don't know. All I know is that we have to go for a joint interview on Monday and be told lots of information about an opportunity to join a project for people like him. I am not ungrateful, I really hope it works out. But I hate that it's all set up from the premise that there are people like him: every person in the project will be someone's best beloved, with their own amazing qualities, lovable endeavours and awkward habits.

I have to put aside my worry about RT being treated as Special and, yet again, concentrate on not being Special myself. I need to be his advocate so I can pick up all the information and help him make a decision. I must not, must not! sit and stare at the person talking because of their teeth, or look at the calendar, or the window, or the fax machine. I must not allow myself to become bored and make my own entertainment, I must resist the urge to be funny.

And RT must have the free rein to be as Special as he likes, without me worrying over it or wanting to stand between him and the kindly people looking at him in that particular way.

In the end, if this will help him, does it matter how they refer to him or exactly what it is called?

You know, it does matter, it really does. Sometimes I think it's the only thing that matters because we all start with a name, a word which defines who we are when we aren't able to say it for ourselves.

And no matter what, our name should be the only label we carry around because that one was written in permanent ink and sewn on with love.

Amanda




My books and writing blog, with free stuff.
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