Thursday, May 30, 2013

A life in Pictures

To paraphrase Temple Grandin.

Visual Emotions

Learning to express emotions is hard,
With a brain on wheels,
and pre learnt tracks.
That might not be leading where you need to go now,
but no brakes, no steers, no way of changing course.

Look out the window and signal for help.
Wave, scream, shout, pinch
Someone will hear and understand and help,
won't they?

A hungry ghost wearing a chain of fire,
All comfort burned by the act of seeking it.

Let me give you water,
Give you words,
Give you brakes.

Let me hold you, let me help you,
Let the road path our feet,
Let us talk.

Wednesday, May 29, 2013

Because Autistics can be creative...

Not that there was ever much doubt, but you know, it's a joke :)

Briefly I've been diagnosed, and it's fine.  Nothing more, nothing less.  Its given confidence in my and my daughter, I managed to get this far, and I can let go of her a lot more and try and help her journey.  But not today, sadly.  Hence the poem,

An afternoon walk to the shops.

On a road,
Holding hands
Sticky with ice cream and memories of food.

Our shadows slide behind us
over the gravel pocked ground
You hold my hand
and I hold yours.

Often you let go and I will run, chasing and screaming my terror
Focused on the chase, focussed on my lack of resources to engage you
to keep you safe, happy, amused and learning.

When you have an autistic child
You walk the path of the teacher, the therapist, advocate
Sometimes too, but not so often, the path of the parent.

Holding that small sticky, curiously warm hand
And you see life unfurling, still miraculous, still amazing
But yet, not right enough for ease or comfort.

And I hold that hand for dear life
I pray for my autistic brain to soften, to mellow, to allow grey round the edges
I berate myself saying
"The Last Thing my autistic child needs is an autistic parent"
I howl and scream, so loudly that no one will ever hear.  The walls that surround me, are the walls of my heart.

How can my heart be so full of love, and yet my brain so rigid?
My mind goes blank, aware as the sky
My eyes see beyond the moon

But one scream, one whine, one non verbal grunt when I know there are words
Hidden inside the maelstrom of the encompassing anxiety that I just cannot reach inside
And I am lost too, swirling on my own orbit of rigidity and frustration.

Where then, shall we meet?
Where shall we meet my daughter and I?
Where but in the road, holding hands
Sticky with ice cream, and walking forward.

Walking, walking, always walking
But together.

There is love and it is here, in the rising of the toe from the floor, and the kiss of the heel to the earth.
Love in walking, in sticky hands, in screaming "NO! Don't run! Don't eat that! Don't Jump!"
Please darling, jump to earth, with me, and lets walk.