Alive Alive O ... & Kicking

... and grateful to be so.

This word, alive, crops up a lot in this community.  I saw a tweet recently sharing a blog post by a mum about her daughter & leading with the quote:

"Alive.  She wants to be alive."

It put me in mind of something else I'd read just as recently, much, much closer to home.  A form, filled out at school.  Under "my achievements" was written, in a careful but deliberate hand, 
"living this long".

My reaction was mixed.  

I was so sad but I was also very proud.  

I was sad because living was considered an achievement ~ clearly life is such a battle that to be winning is worth recording ~ and I was sad because this was the only achievement recorded, or acknowledged.  

Then I was proud.  I was proud of the honesty ~ because this feeling had been expressed.  I was also proud because winning this battle ~ staying alive ~ requires incredible bravery, resilience & strength, just to manage the extreme levels of anxiety, sometimes panic, caused by 'being autistic' in a neuro-typical world.

They don't recognise these attributes in themselves necessarily, nor are they visible through their demeanour or behaviour ~ these attributes manifest in such seemingly simple, every day actions like leaving the house, getting into school, staying in their seat at school, moving from classroom to classroom, transitioning into a busy assembly hall, trying to make the right choice when you think someone is laughing at you & so on, & so on, & so on.  Sometimes the bravery, resilience or strength fails.  Then they might withdraw, hide away, run away, scream, cry & even kick out.

But they are alive.

I do sometimes worry that bystanders wonder what the blazes I'm going on about all the time.  Why am I always harping on about autism?  What's the big deal?  It's just a condition, not a terminal illness.  

No-one's going to die.

But the thing is, they could, actually, & they do.

The mental health issues that often arise as a result of being autistic can become so severe that life is threatened, & sometimes lost.

And that's the worry.  I wish I'd seen written under "what I want to achieve" the words "Alive.  I want to be alive."  But just because it wasn't, doesn't make it not so.  And there was something there so, phew!

So, I am very grateful that we are alive.  I & other parents are always very aware that it could be worse.  Many (but not all) of our loved ones are alive &, with the right support, understanding & acceptance, will remain so & will flourish & will find positive ways to utilise their amazing personal skills & experiences.

We know others have it different.

But, like anyone, we will do whatever we can to keep our loved ones safe, to keep them alive.  

Alive ~ & kicking ~ if that's what it takes.

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