Friday 24 February 2017

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.


Piccsy.com via Pinterest







Thursday 2 February 2017

Conversations

And now a C word!

Conversations.

Actually, A conversation.

That's all it takes ~ just one conversation.

A conversation can save someone's life.

It's time to change attitudes towards mental health issues.

Start a conversation or be ready to listen to someone who does.

Today is time to talk day. 

Watch the video & find out more.  





Books

So this is a B I do like.  I really do like books.  I wish I had a library (or multiple book shelves altogether somewhere) where all our books could be respectfully displayed & ordered, easily perused & picked up.  Space for the books we own already & the books yet to be acquired.  

Actually, I remember creating a library in my bedroom as a child.  Every book was categorised, each had a hand-drawn 'loan' stamp in the front, each had a location code taped to the spine & each shelf in the glass fronted cabinet was labelled.  I think I could lay my hands on one or two of those books right now. 

Like many, I love the feel & smell of a book ~ some I could literally stroke (momentarily) or bury my nose into, they feel & smell so good!  

So, given my love of books, of aesthetics, of the need to understand all things autism, it won't be a surprise to learn that our book collection is growing at a rapid rate.  With some books I simply enjoy looking at the pictures ~ these are the books that satisfy my love of aesthetics.  I'm in famous company.  Andy Warhol is quoted as saying:"

I never read, I just look at pictures."

With others I absorb the words ~ within this category are many of the books on autism & in these are numerous underlinings & notes in the margins.  At some point I'll revisit these & share highlights & musings here.  Going forward, as I finish a book, I will aim to post a review, as a memory jogger for me & in the hope it might be useful to passers by.

 For now, I have a stack of books waiting for their first page turn, waiting to be discovered & enjoyed.  These are a mix of fiction & aesthetics.  These are the ones where I want to carve out time to sit & enjoy without risk of interruption   And I have at least 3 books that are part read, 1 fictional, 2 factual ~ about autism (of course!).

The one I want to finish most urgently (& which was started most recently) was recommended to me by our CAMHS Consultant.  There's already much underlining ~ & I suspect my pencil work is as unfinished as the book ~ but I would already recommend it to anyone wanting to understand more about Pathological Demand Avoidance, or PDA.  It is:

by Phil Christie, Margaret Duncan, Ruth Fidler & Zara Healy 
via Jessica Kingsley Publishers



I am reluctantly including an image (& link to the publisher ~ other retailers available) but doing so jars horrendously with my desire for appealing aesthetics, for which I can only apologise!

via Pinterest (original source unknown)