Autism & Admin

Today's story, friends and neighbours, is 'How To Crush the Soul of a Special Needs Parent'.  

Recently, I lost my Carer's Allowance and had to make a phone call to see if I was still eligible for Carer's Respite Grant.  This is how it went.

I dial the number.

An automated message kicks in.  In Irish.  The length of the message makes me wonder if I misdialed myself into a gaelic version of Homer's Odyssey.  I don't speak Irish so I can't be sure.  The only thing I can do in Irish is to ask permission to visit the toilet, or invite someone to kiss my arse.  These are both useful phrases tbf, but of little utility for today's purposes.  

Finally I get an option to select English.  I can only guess that the robot-man repeats what he has just said in Irish..... something involving websites and recording.  It bumbles into an incoherent drone after about 15 seconds.  As a numbing agent, it could be of use in anaesthetics in lieu of medication.  I feel nothing but the pressing urge to sleep with immediate effect.

I keep myself alert by gazing at my reflection.  I think I can actually see myself aging.

Eventually, the robot-man (who seems to have confused his job with reciting a twenty-seven verse lament), begins to list The Options.  Of which there are roughly 4000.  I am bored by the third one.  I consider making tea.  Then I worry that my tea distraction caused me to miss my option.  I experience a disconcerting mixture of panic and apathy.  My brain implodes a little.  I definitely should have made tea.  I select the option for the operator.  The line connects and makes what sounds like mating noises with another line.  I feel voyeuristic and a little icky. I want to have a shower.  Then, I feel a flash of excitement as the line makes ringing tones.  It clicks into life.

The automated message begins again.

The darkness of coma presses the edges of my awareness.  It is madly seductive.  But I have survived surgery, illness and three labours;  I can endure this.  Finally the message ends.

Then the "music" starts.

Self-harm isn't really my thing, but I wonder if pouring bleach in my ears would lessen the pain.  I really wish I had made tea.

Then..... result!... an actual living, breathing human being answers the phone.  Except I quickly become mistrustful of the living, breathing bit.  "Hello"  he wheezes.  With an optimism I don't truly believe, I explain my query.  Silence.  I fear the effort of speaking may have killed him.  "Hold on" he finally rasps.  My relief that I haven't murdered him is short lived, however, as once again the lines make their robot sex noises.  

The automated message starts again. Then the music.  I consider sticking my hand in the toaster to defibrillate my fading heart.  

But..... joy of joys!.... another human answers.

"Housing benefit" she says.

My life flashes before my eyes.  I focus on not looking at the light.  I'm not ready to die yet.  I explain my situation, weak with hope that maybe she can help me.  "Hold on" she says.

I now have new respect for the term 'hold on'.  It's more than just an invite to brace yourself for a few moments of drifting in cyber-void.  Really, it's a grim warning to cling to your sacred soul as the life-force is bled from your veins.  Underestimate it at your peril.  

More pornographic connection noises.  The automated message reanimates.  I bury my face in my knees.  My daughter comes into the kitchen, makes herself tea, gives me the middle finger and runs away laughing.  I deeply regret my decision to reproduce.

My eyes glaze.  Outside, it starts to rain.  I feel myself being lulled to sleep.

But..... miracle divine!.... another human.  She asks for my mother's maiden name as a security question.  I am convinced this is some kind of sick test.  At this stage I struggle to recall my own.  

I dredge up the required details from the porridge between my ears.  The human is satisfied and agrees to send me out a form.

I collapse, make a small vat of tea and plan revenge on my reprobate daughter.  I have survived another Trial of the Special Needs Parent.

Carers in Ireland save the government roughly €10 billion per year.  It is means tested, but not only on my loss of income due to giving up employment to care for my autistic son.  The salary of the person I happen to be married to is considered to be my income.  The unfairness of this is sickening, but most of us are too exhausted to take the government to task over it.  In a weird Alice in Wonderland logic, we are penalised for working and paying tax.  It would be funny if it wasn't real.  

 

Autism & Noise

My home is noisy.

I sometimes can't put a shape on my urgent need to escape, or why the persistent buzz of anxiety exhausts me.  I love my family.  I have purpose and joy in my life.  Yet I crave a roaring ocean, a stormy forest, a vast, empty sky.  I ache for restful birdsong and seasalt on my skin.  I want to lie in an open field with the sun in my face and the breeze on the back.  I long to be lulled by bees and made drowsy by distant traffic.  I am at a loss to explain this urge to flee.

My daughter's boyfriend, who I love dearly, recently articulated it perfectly for me.

"Your house is fucking mental" he told me.

Tbh, I had kinda forgotten.

In the same way that a fish doesn't know it's wet, I have become oblivious to the pervasive volume contained within our walls.  It is the constant heartbeat we are deaf to; the white noise we don't hear with our ears, but feel in our blood.

Clamour is ubiquitous.  We have no mute button.

Three TVs, in three different rooms, transmit a cycle of cartoon series.  A desktop pc spouts many open tabs of multi-lingual YouTube clips.   A portable DVD player syncs with the TV.  Finian vocalises his own autistic language; laughing, squealing, grunting, scripting, singing, humming, shouting, crying, snorting, talking.  But rarely silent.  He never stops moving, heavy feet bouncing between devices to adjust buttons and dials.  His mobile phone connects us to a river of nursery rhymes.  When he can, he comandeers his brother's XBox and streams his shows through that too.  I hear little of it.

Overwhelming sound is the silent river I swim in.  What I am ear-blind to, erodes my rest and invades my dreams.

I get that noise may, paradoxically, help defend him from sensory overload.  It may form a shield against the onslaught of sensory input he can't filter out.  None of this is his fault.

But it's exhausting.

A spell of silence, stillness, reverie would be divine.