A kickstarter poem

This blog has been sitting dormant for many moons as a potential space for my half fledged thoughts to spread their wings and find a home. Life gets in the way. I’ve noticed that every evening around 6 o’clock my brain starts firing ideas which I cannot catch and pursue and they escape, untapped, unexplored, unwillingly ignored as I’m doing the myriad of things one does at 6 o ‘clock. This is my attempt at Not. Any. More!

I want to write about how learning unfolds for the two beauties I spend my days with, and how I’m learning alongside them. Here, they’ll be known as the Ninja and the Firefly. If my daughter saw one of these winged beetles and realised I’d named her after it she would be horrified and disgusted, but I have my reasons… and more on the Ninja later.

This poem was prompted by it being Autism Acceptance month, by it being the month in which some professionals finally agreed that our children are Autistic, and me coming to terms with what that really means. The poem has been through quite an evolution. It started as a nicely rhyming shamelessly self pitying rant if I’m honest. But every time I came back to it and rewrote it, in a calmer, clearer state of mind I realised the Firefly was the same no matter what mood I was in that day, and I could edge nearer to the truth if I could see past the mist of my own random emotions. I’m getting there.

What does Autism Acceptance mean to me?

It means the peopled world at large, can be a harsh place,
and other people’s normal, the opposite of safe space.

It means declining parties
because the noise invades your ears.
It would all end in tears
because there are girls you don’t know
and you can’t guarantee that moment of connection
when you give your friend a gift they love
and you seek appreciation and affection.

It means a place you once felt safe,
now panics you and makes your heart race.

It means an unexpected question wields the threat of a well aimed weapon.
It means me asking ‘porridge or cornflakes?’ seems to threaten
the very essence of your independence.

Your train of thought just wants to be
free
to be
to unleash its words and ways
to ripple and ride over my ears
an endless current
of you
that bubbles up,
and delights in holding me captive,
rapt in your presence.

The more I pay attention to you and see you truly for Who You Are
the more I wake up blessed and filled with grace.
Beautiful,
whole,
alive,
inventive,
steeped in self determination,
bemused by others’ incentives.

And yes, I wait patiently by your bed as you wrestle through clothes.
You can’t bear to choose
– its all hot, too tight, too cold, too loose…

And yes, I fall short of answering invitations to all manner of things
because I teeter between wanting to and knowing the upset it may bring.

And yes, it means friends who don’t intersect
with our slow paced life can fall out of touch,
And the days I’m tricked into a low mood,
hearing of others fun filled adventures can feel a bit much.

And it even means you fear your own birthday:
You have learnt that a new age heralds change
and you construe
this to mean you will no more be you.

It also means we have just a few photos of you
gazing back at us and smiling –
they are gems.
Eyes sparkling,
light pours in and out of you,
refracts in all directions,
and you shine in your innate perfection.

We struck lucky
capturing your delicate
dancing essence in those photos, but I don’t mourn the lack of dozens more.

It is ALWAYS there and I see it every day.

You are like the firefly –
shining from within and for your own sake.

You are luminescent.

Others may dazzle bright,
but you,
my love,
unfettered, free of doubt,
are always dancing by your own light.

And thanks to you,
I now walk in light.