embrace

XT1C0761chalet

Change can and does happen. Hope is not always just a frilly fantasy. Sometimes, even after one has given up and walked away, change unfolds.

Many years ago, I walked away from a connection with an ‘autism mom’. She wasn’t the typical, aggressive mom-crusader that you see in online mom-forums. She was always private about her woes, but nevertheless, at the time, so full of her own grief and struggle that she was unwilling to hear whatever I had to say.

Our paths crossed again recently. Her autistic son is an adult now. The struggles have been fierce, tumultuous, and the future is still shaky and uncertain. Yet, I see an acceptance, and embracing of her child, and a fierce loyalty and determination to support him, that I never saw before. Continue reading

Advertisements

clement space in the city

IMG_6234-sofa-bed

I spent the last few nights and days in this sofa, positioned right next to the loo. For safety, because I nearly fell down the winding stairs connecting to the loft bed. And for convenience, in case I had to throw up. A good thing I am short, but still, I have not laid down properly in a bed, stretched out, for this entire time. Continue reading

amplified senses

soup

What happens when an autistic person with hyper senses becomes unwell / sick? Do those hyper sensory antennae suddenly shrink to ‘normal’? Nope. They are amplified still, as ever, if not even more so. The pain is compounded, and searing terror all the more gripping.

Staring into my delicious bowl of hot potato and leek soup this morning at the Arthouse Kitchen, after an entire night spent retching into the loo, I felt a sense of relief – just simply because I was no longer trapped inside the swirling sphere of excruciating agony. Last night, it was as if time had snapped its back and was lying on the ground in a crumpled heap, sneering at me each time I convulsed, perspiring profusely like a tap at full blast. Not a pretty sight. Not one I’m happy to allow any to witness, so another episode came and went, with only the cosmos as voyeur, and my paltry words to record. I don’t want or need anyone to hold my hand during the ordeal, no thank you, it adds to the distress, really. Yet, being all alone in the cold, stark artist’s studio while teetering on the brink of physical and mental breakdown, was admittedly most frightening.

I couldn’t swallow more than 6 spoons of the goop, no matter how tasty. The throat is inflamed from all the coughing and sputtering. Sorry, Massimo. Please don’t take it as an insult to your culinary offering.

It was a comfort to sit in an old favourite and familiar space. Though with a sad twitching tingling feeling, because that was one of ‘our’ places to be – Lucy and me.

Takeaway: Autistic hyper senses = amplified horror and pain when unwell. Spare a thought for us, we’re not being dramatic. In fact, we prefer to hide inside our excruciating terror. But being nearby and knowing that you are somewhere does help a bit, if only to call an ambulance if needed.

lead puffs

incessant inundation

weight of the world

mired in fetid swirl

demanding bits bobs

flotsam jetsam

to you

but me

pieces of my body

painfully sliced

piece by piece

shred by shred

excruciating agony

but no

have to

look here

look there

no, this

oh, that

chat, chat, chat

 

smile

wave

read this

listen to that

what do you think?

any advice?

here’s cake

eat

there’s steak

feast

be grateful

be happy

be cheerful

be merry

but most of all

BE VERY VERY VERY CLEVER

you’ve a PhD

… right?

 

all I want to do is just sleep

accommodating Self

 

Yesterday afternoon, a friend took me to a little nooky cafe, tucked inside an industrial estate. A former hardware shop, the entrance decorated with eclectic vintage clutter served as a thematic introduction to the atmosphere within. As soon as we pushed open the creaky door, I felt a draft of musty, humid, cool air blow directly into my face, then wrap around me like a nebulous mouldy snake. My skin tingled, as my olfactory senses picked up the various miasmic odours emanating from each visually charming piece of history on display.

The waiter ushered us towards the back. Slipping within a split second into a bubble of wordlessness, I followed obediently, semi-somnambulant, my sensory system already engaged in a (routine) contrapuntal wrestling match with the onslaught of smells, sights, and sounds. As we were about to sit down at the allocated table, speech suddenly returned, and words fell out of my mouth like marbles, tumbling down and bouncing sharply against the concrete floor.

“I don’t want to sit here, it smells funny. I don’t like the smell here.”

Continue reading

clement space – by sparrow m. jones

XT1C9934-lucy

Executive function roadblock. Heartbreaking news. Soul destroying dissonance. The autistic empathic resonance is painful, weeping and grieving for a callous humanity, a humanity so oblivious of our delicate gut-wrenching empathy for the things unspoken, yet so powerfully reverberating through the very fibres of our Being.

We need Clement Space.

Get away from the terrible soul destroying news. Humanity at its worst. And – you know that I know that we know – there is no end to it, for as long as humans survive.

Yet… somehow… there is goodness in humanity yet. What conundrum is this?

Here is a poignant and beautiful piece by Sparrow M. Rose, musing on my theme of Clement Space (a concept inspired by Lucy Like-a-Charm).

I need this today. We need this today. Come inside Clement Space.

 


Clement Space

by Sparrow M. Jones

Assume a kind world where everything you need is everywhere you go.” – Patti Digh

Endogenous space. Contracting to the single point within. Free-fall to the center where infinite smallness expands, hidden in the waistcoat of antimatter.

Exogenous space. Expanding to an infinite perimeter encompassing nothing. Drift, gravity-free to the periphery where infinite grandeur contracts, hidden in plain sight. Continue reading

dehydration

Yesterday, I tried valiantly, and with great determination, to return a faulty dishwasher. The person on the other end remained stolid. It was I, not the dishwasher, that was the anathema, the malfunctioning entity. There was much spewing of verbiage completely irrelevant to my pleas, throwing of sparkly dust hither-thither and blowing of bizarre smelling fumes into my face. Exhausted and worn out to the very crisp core, I finally threw in the proverbial towel, recognising this as an exercise of futility.  I threw out the dishwasher. It now sits, sad and forlorn, in the junk heap. I swear, when I walked past this morning, I saw a malevolent snigger painted across its glass face.

This morning, Lucy woke me up at 6am, asking to be taken outside for our morning walky. Without her, I am not sure I would have the strength to get out of bed, even though sleep, most of the time, is pretty much like the spawn from a trashy, poorly written novel and an elusive goblet of sweet wine.

My eyes hurt. A stabbing pain. My skull throbs. A vice across the front squeezing intermittently. My brain is screeching a high pitched, dehydrated and incomprehensible sprechstimme.

It’s still April. Yes, I did check.

This Autism Awareness thingy, and the chorus of dissent from the actually Autistic community (justified and worthy of support), has already kicked a deep dent into my fragile construction of Clement Space.

Today, I just want to celebrate April as Adopt a Greyhound Month. Please.

Here, I present to you, Lucy Like-a-Charm in Sonorous Repose. A collection of photos I created in 2015, about her innate ability to identify, take possession of, and craft intimate spaces of comfort and calm, wherever she may go. A skill I very much want to learn.

Lucy Like-a-Charm in Sonorous Repose 2015

Available as limited edition prints. Enquiries welcome.

Greyhounds are such pulchritudinous creatures. Adopt a Greyhound this April! Bring back beauty into your life, Oh, Weary Soul!

(Or, perhaps you might want to bring one of these limited edition prints into your home? It would help an Autistic Bunny and her Greyhound Angel to procure much needed rations for survival of April BlahBlah Month!)

broken angel

IMG_3365lucyzz-portrait

an angel’s trust

once betrayed

how soon

if ever

to win again?

rage deflected

fell

a deafening thud

upon innocence

blow once dealt

cannot be rescinded

how contemptible

such horror this?

devil’s mischief

humanity’s defeat

heartbreaking cry

angel’s grief

sleep now

my sweet

rock-a-bye babe

human tears

are made of folly

dear sweet angel

i have failed

your love

so undeserved

yet pleading

forgive me

my disgraceful

humanity