dedication

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This blog is dedicated to:

My beautiful, big-hearted baby sister and her valiant, generous hubby, and my most loyal and supportive friend YS – thank you for helping me eat better, look beyond my feet, reach out, live my dreams and keep on keeping on, knowing always that I am loved.

My canine angel, Lucy Like a Charm, who shares this wonderful journey.

Can Speech Challenged Students Get an Appropriate Education?

A bitingly powerful post from Emma again. I have nothing more to add. Please read it in its amazing entirety!

Emma's Hope Book

     What would you do if the whimper in your heart could not find the right words to speak? What if you couldn’t control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflection of my intelligence. Typing is a better method for me to convey my thinking, but it is laborious and exhausting. So what is to be done with someone like me? Is it better to put students like myself, of which there are many, in a segregated school or classroom, is inclusion the better option or is there another answer? I was believed not capable enough to attend a regular school, nor was I able to prove this assumption wrong. In an ideal world these questions would not need to be asked because a diagnosis of autism would not lead to branding a person as less than or inferior. Those who…

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strange ecologies

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parallel embodiments

This is a simple yet very concrete article about affection and displays of love, between dog and human.

To Hug or Not?

I am learning a great deal from Lucy. She teaches me about parallel embodiment and alternative empathy. It does us good to pay heed to things that may not be within our own functional paradigms.

Why do I not want to hug you? Why do I cringe when you lunge at me in embrace? Maybe it is because I cannot bear the touch of your smell, or the taste of your hand on my skin? Have you considered that perhaps I have other ways to show you that I love you? So, please do not patronise me from out of your own ignorance and lack of empathy for ecologies not your own. Continue reading

elemental

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shell of eternal grief

It isn’t about “forgiveness” – a dimension too much talked about yet too little understood by all. This is about the severance of an element, after an irreversible interruption. Sometimes, what is broken may be put back together again and in doing so, a new creation is formed (because the break can never be mended as if there never was). Other times, gold can be poured to symbolically fuse the fragments together as a work of artistry and beauty. However, in some situations, when the fragmented part completely vanishes into the wasteland of cosmic nothingness, there can be no rectification, renovation, restoration or even remolding. It is gone. Forever.

Add to that howling eternal void, and the inconsolable grief that shall remain with me and the one you harmed for the rest of our lives, there is that the simple fact that no valuable gesture of repentance has been offered. The popular and commonly misread word, “forgiveness,” is inappropriate to insert into this anti-space. So, stop bleating and whining about your distress, pathetic vapid expressions so contemptible in its essence. Even if it may move the social gathering around the camp fires of superficiality, it will not move me. I do not care for general social consensus, nor am I afraid of censure from those who have no knowledge of what I speak.

Simply put. I shall never acknowledge your existence in my physical domain again. Your embodiment, all it represents, no doubt remains in the entrails of my bereavement, but all outward corroboration – gestural, verbal or social – that I may have had to muster for you out of sheer tolerance before, has now traveled the way of the precious entity that you have destroyed. I did not even get to bid it goodbye. I was not allowed to speak, see, smell, touch or signalise its passing. And so you shall go that way too. Because it has to be. Nothing more, nothing less.

campfire!

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bonhomie!

aimless buzzing around the campfire of neurotypical bonhomie

blib-blib-blibbety squeeeeee

baby girl, I want you to look at me

no, not at my lips, my eyes! you silly!

stop waving your hands, sit still and listen

I’m telling you all about how my new hair glistens

oh, and did I say I so love that dress you wear?

and guess what I found the perfect matching chair!

let’s go shopping together sometime, love

you have such impeccable taste

I’d like to buy a purse with bling-bling turtle doves

perhaps also some fresh duck liver paste?

yak yak yak yak… on and on…

trying to stay awake from night till dawn

cackling, crackling, sizzling, slop-slop-slide

nowhere to run to, help me, please, I need to hide!

I see your lips go up down sideways there and back

your perfume cutting through my diaphragm

I hear the crashing thunderous chitterchatchatchat

trying hard to eat my eggs and ham

more salt, more salt, somebody come save me!

holding my skull together by sheer force of will

lest my body combusts in pyrotechnic glory

all guts and gore in colourful spill

stop overreacting, you say say say

it cannot be that bad, honey, don’t you love me me me?

I do love you truly true, but I am tired of

aimless buzzing around the campfire of neurotypical bonhomie

beautiful sunday

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petite aria

A beautiful Sunday of reassuring undulating rhythmic respite is unfolding… Yes, I am talking about working… At last… Some release, relief, trickling through from that too long frustrated thwarted desire… The excruciating agony of crippling entrapment, the fragile winged creature flutters inside its cage, the golden liquid swishing violently against the unyielding containment of harsh cold metal jar, longing to be set free… Continue reading

my love

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Till a’ the seas gang dry…

Collected my baby girl from the emergency vet this morning. Back home, fed a bland diet of cooked turkey mince. She is now sleeping in bed. We are waiting for her regular vet to come and pick us up, because Lucy is too weak to jump in and out of a taxi. Dr. Ivor is a wonderful vet, and he has been ever so kind to us. It seems like a long road ahead for us both, but I owe it to Lucy to do all I can for her wellbeing. Right now, our immediate goal is to stabilize her, before we head on towards a plethora of tests and explorations. Not a good time at all, I am in the throes of completing my Ph.D dissertation, and have (as it is) blown apart two whole months running around doing all kinds of things – moving house, packing & unpacking, dealing with Lucy’s accidents, battling my own monsters of meltdown and physical pain, fighting the bullying of the Evil Twins (real estate agents) etc blah – just about everything but proper work. Not much time left, and I face an impossibility. But we have come this far, we now have no other choice but to rely on the great cosmic clemency that has carried us through, to propel us forward. And thusly we shall go!

A Robert Burns poem that I like to sing to her… as we wait… I am trying not to overwhelm her with my anxiety and singing helps us both at times like these.

O my Luve’s like a red, red rose,
That’s newly sprung in June:
O my Luve’s like the melodie, 
That’s sweetly play’d in tune.

As fair art thou, my bonie lass,
So deep in luve am I;
And I will luve thee still, my dear,
Till a’ the seas gang dry.

Till a’ the seas gang dry, my dear,
And the rocks melt wi’ the sun;
And I will luve thee still, my dear,
While the sands o’ life shall run.

And fare-thee-weel, my only Luve!
And fare-thee-weel, a while!
And I will come again, my Luve,
Tho’ ’twere ten thousand mile!

Robert Burns

frantic pain

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I would give anything… if only I could…

Lucy has been unwell. Two months already. The trouble hasn’t stopped since we moved home. And yes, that accident… The schism that eternally severed the rhythmic flow of unfolding, cutting away from that split second on the former ecology of Being. Weeks of nightmares, twitching and crying in her sleep, ensued. The pain, sadly, did not end with the physical healing of the amputation.

Multiple vet visits for one thing after another. Vomiting. Diarrhoea. Lethargy. Weight loss with excessive hunger. Blood tests. Body checks. The works. Nothing conclusive. I don’t know what else to do anymore. All I know is that she is in pain. Still.

And it breaks my heart.

She is my nonverbal child, a parallel embodied entity, whose life interweaves with mine. Her sentience has propelled me into dimensions of knowing, weaving rich tapestries of narratives that I would never have entered on my own. Yet, I am unable to help her resolve her pain.

Today… frantic discomfort. A reaction no doubt from the latest medication – a painkiller – what twisted irony, wasn’t it meant to relieve her of her pain? But that is what happens. I know all too well, after a lifelong tumultuous relationship with pharma myself.

Pacing. Panting. I run outside with her. Rain pelting down – and Lucy hates the rain – we were soaked to the skin, she and I, but there was a more desperate mission at hand. Round and round, back and forth, up and down we walked and walked and walked. She stopped to sniff, then went on. Stoop, strain, stoop, strain – nothing. Repeat all over again. Thunder. Lightning. Run, pant, run, run, run! Stop, stoop, strain again… Little slivers of excreta… Her whole body taught… I massage her even as she is in position… It seems to calm her a little. What else can I do?

We return home. But she is restless, inconsolable… and a few minutes later, we are running downstairs again. Rain… wet… we are splashing across huge puddles… Stoop, strain, stoop, strain… run, run, run… more slivers, more massaging… Two bizarre creatures in the pouring rain, no umbrella, no time for her raincoat even…

She is at last in bed. I massaged her and she fell asleep. But only for awhile. Yet another nightmare. Whimpering. Shaking. So much of this lately. Ever since… that day…

But my brave child of another species, unlike the human one, she does not throw her hands up in despair, she does not give up… she just keeps going… and so, too, must I.

ear

your aura is ringing in my ear

soft rotting vegetables

painting nausea in the corner

a room full of sweat beads

dancing merrily

bouncing

on fine tentacles

wordless interlocution

hairs embedded

crackly long nails

scratching screeching

ouch! it is painful!

though it’s your skin

not mine

yet my ear

hurts

in

enforced trespassing

installing grace

 

Food – and the entire process of sourcing, preparing, arranging and imbibing – is a material entity that engages itself with my attempts at installing grace.

Especially when situated within a graceless space, an inclement situation, or as a gesture of self preservation on multiple dimensions which cannot be better expressed via other structural forms.

There are times when I create to address emotional excitement, other times merely a primitive sensorial response of the moment, and then there are the “doing-ness” when in out-of-body forms of catatonia (brought on by trauma). Food provides a physical, concrete and palpable elemental anchor, not merely for the taste buds, but on dimensions that my addled brain is at the moment unable to string words on behalf of.

Today, lunch was a deliberate, even laboured and determined installation of grace. Self administered Grace. In the midst of shock and momentary devastation.

What happens when people representing organisations listed as “help” agencies and “advocates” attack and abuse the very people they purport to be “helping” and “advocating” for?

Today, I called one such establishment. I was actually acting according to instructions by another legal authority to pursue this line of action, specifically on account of disability. Dutifully, obediently, the Aspie Brain executed the action.

“Shock”is too mild a word for this encounter. But it will have to suffice.

I was summarily told…

We are not here to make you feel more comfortable, you know?

No words.

Back to my installation. That does make me feel more comforted, even if not more comfortable.

There is something about installing grace…

voiceless

Dogs are wonderful creatures. In terms of comfortable, clement interactivity, they rank higher than humans for me. Well, animals in general, but in my case, specifically, it’s dogs. And more distinctly, Greyhounds. Umm, ok, narrow that down to one Greyhound: Lucy.

I grew up with a healthy respect for dogs. Dad believed in rescue and adoption, he despised the practice of buying a dog. Some of the rescued dogs were quite feral when they first arrived. I’ve been bitten by a few, our own and the free roaming dogs that lived in the nearby village (our family home was a large brick semi-detached in a modern residential estate, perched at the edge of a traditional Chinese kampong).

Long before the new science of canine behaviour emerged, in the relatively ‘ignorant’ days, there were nevertheless fundamental tenets of respect embedded in our mindscapes about living with dogs.

Simple Wisdom from dad: dogs have different ways of showing affection, different comfort thresholds and different communicative styles from humans. Do not taunt a dog. Do not rush head/face first at a dog. Do not touch the tail, pull ears, pinch, smack etc. Do not surprise the dog. Do not disturb the dog when he/she is eating. If the dog nips you, it is probably your fault. The dog cannot speak in words.

Simple Wisdom from dogs: dogs tolerate a whole lot from humans. Dogs try very hard to communicate with humans. Dogs tolerate a lot of rubbish behaviour from humans. Dogs are wonderful creatures that ought to be respected and treasured, because they can teach you much about how to be a better human.

Lucy has opened up amazing trajectories and dimensions to me, and inspired not only the desire and determination to love and care for her, but also much of my research and practice. To me, she is my non-verbal parallel embodied companion, a living sentience of my own theory and praxis.

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wordless repartee

Verbality is not superior to non-verbality. Affection and love has many systemic structures and are evinced in myriad configurations. Just because an autistic child/adult does not enjoy hugging or kissing you, or looking in your eyes, does not mean the autist feels no elemental empathic resonance for and with you. Learn to speak our language, especially the silent one, since we are making great effort to learn to speak your verbal one.