Tuesday, 10 April 2012

But she looks so normal! Define Normal!

I'm pretty sure I've written a similar post before so forgive me if I am repeating myself! But, these things keep happening and I need a rant! All you parents of autistic kids will have heard the all too familiar phrases, 'But she looks so normal', or 'I've never seen her have a  meltdown. She's always well behaved!' Or, the latest one I heard this week from someone I work with, 'your daughter is very kind and caring. I thought kids with autism couldn't relate to people or show any empathy.' Please please please never say these things to the parent of an autistic child because you do risk getting a smack in the mouth and I pretty sure people get arrested for that! I can't begin to count how many times I have heard these things. Not only from strangers but also from family, who really should know better!

Whilst FD manages to function relatively OK when we are in company that's not to say that she's actually coping or that things are as 'normal' as they look. I suppose the only way I can explain how we 'manage' is to ask you to think about a movie production. What you see on the cinema screen is a story. All the actors are playing their part. The set looks great. Costumes look fab! The lighting is perfect. Now all these things didn't just happen by happy accident. There's a lot of background stuff going on behind the scenes. There has been days, weeks, months of planning. Every eventuality has been thought of and counter plans put in place. This production is running like a well-oiled machine! Its all kinda perfect. Or is it? Are there really a Director and a Producer behind the scenes tearing their hair out or having lots of sleepless nights with worry, dread and nightmares about how it could all go horribly wrong?

That's what our lives are like. Whilst we may be sitting in your home having dinner and chatting about this and that, you don't know that we had a 2 hour meltdown before getting to your house. You of course don't know about the anxiety my daughter had about what clothes to wear or the fear that you would ask her a question she couldn't answer. What if she didn't like your food? Would you be cross if she didn't eat it all? What if she needed my help in the bathroom but was too embarrassed to ask me in front of you. These are things she worries about. These are things we worry about.

Days out are an even bigger hurdle. FD hates crowded places so you can imagine the anxiety around going out to say a farmers market or a fair. So, pretty much like the production crew behind a big budget movie, we are constantly looking out for signs of imminent meltdown. Like good cowboys we are 'heading them off at the pass'! We stage things and situations in certain ways to allow FD to cope. Whilst we welcome a big family get together we just know that after a while FD can't cope. So we have our action plan in place for that. When it all gets too much she goes to her room and puts a 'do not enter' sign on the door. When she's ready to come downstairs again she will. No pressure.

There's always some little trick or plan we have ready to put into place at a moments notice. Family meals out for instance means I always ensure that I am sitting either beside her or opposite her so that I can help her with food choices or with cutting up difficult to eat foods. Although FD talks a lot, she actually finds it difficult to hold a conversation for long and so  having me sitting near to her ensures that she's never left out of things and always has someone to chat to, particularly if we are in a large group.

So, whilst you may think my daughter appears 'normal' and you have never witnessed her go into full blown meltdown. Or, you have never been up all through the night with her, doesn't mean it doesn't happen. We have just learnt to manage things a little differently. A little more subtly.  This isn't always successful. You just don't know about it! We are Directors extraordinaire! Stephen Spielberg would be bloody amazed! This is our 'normal'.

This post was written as part of the #definenormal blogging challenge via RenataBplus3 at Just Bring the Chocolate which I read about on the great blog Little Mamma Said. Go check out these blogs. They are pretty great.

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Di said...

Great post Jontybabe. Yes, people don't realise the effort put in beforehand. They also don't get to see the aftermath..... :)

LittleMamma said...

The analogy of the movie is brilliant! People don't see all the effort that you have to put in. Truly enlightening!