Autism & Forms

Special needs parents are a tough bunch.  

We attune ourselves, with exquisite sensitivity, to the complex needs of our kids while developing the assertiveness skills of an outraged rhinoceros. We circumvent the normal channels of communication and instinctively intuit when someone else is hurting.  Meanwhile, we manifest our inner steam roller and stop at nothing to ensure the wellbeing of our loved ones. 

It's a yin/yang kinda vibe.  Don't judge me.

I can manage my Joan Crawford/Doris Day ambivalence fairly well.  Each of us is a combination of many different parts and I summon up whatever aspect of my Self is needed to deal with what's before me.  

While I eat, drink and swear too much to be a warrior-angel creature, I occasionally wear my pants on the outside (by accident) while mustering all my strength to advocate for my son.  What I mean is, I'm a kinda crap super-hero.  More drunk Super Ted than Bionic Woman.

But, despite all my super-heroing, one aspect of special needs advocacy continues to be my undoing.

Fucking application forms.

I wrote about this before, but it's the gift from the bowels of hell that keeps on giving.

Here's what happened.

James and I take Finian on a train ride to Dublin.   Train rides are only marginally lower on his List of Favourite Things than Bob the Builder and salt & vinegar crisps.  He's having a blast, but it works out kinda pricey. It occurs to me that he's probably entitled to free travel.

Google directs me to the Free Travel Scheme.  I am pleasantly surprised that there is a specific link for disabled adults who cannot travel alone.  Form FT U70 to be exact. All Finian's boxes light up with happy ticks.  I envisage the joy he will get from limitless train and bus rides.  Filling out a form seems a fair enough trade to make this happen.

My heart sinks a little that Form FT U70 requires a medical report. This means organising a trip to our GP, who has better things to do than say "yes.  After 18 years of seeing this young man, I can attest that he's still autistic.  I do not expect him to ever be not-autistic.  I expect him to undress, scare small children and probably maim himself if allowed to travel alone.  Decades of being a doctor inform me that none of this is a good idea.  Give him a fucking travel pass".   I have a word with my inner Zen Masters and decide to be Buddhist about it.  I'm delighted with how spiritually evolved I am.

But something feels off.

I read the form again.

There it is.  The fly in the bureaucratic ointment.  A fly big enough to make my inner Buddhist cry and my Zen Masters wonder if this would be a good time to experiment with crystal meth.

I cannot complete this form for Finian unless I first fill in Form FT1.  

I know I would only be harming myself if I hurl my laptop against the wall, but the urge is compelling.  I retain enough inner Zen to resist.  I am more than a little surprised at the depth of my metaphysical resilience.  I pat myself on the aura.

I follow the link to Form FT1.

Suspiciously, it seems pretty simple.  No medical required.  Same old information they've had about eight thousand times already.  I swat away the shadows of despair leaking into my consciousness.  I'm a strong, independent woman.  I can do this.

I can't do this.

Form FT1 informs me that I cannot complete this form unless Finian has a Public Services Card.  

Finian does not have a Public Services Card.  

Acquiring a Public Services Card involves an appointment, obtaining photographs and waiting in lengthy queues.  

And more forms.

I wonder if staff in the Department of Social Protection cannot allow their own intracellular biochemical processes occur without first completing a small avalanche of forms?  Do they emerge from the womb clutching a clipboard, insisting that everything is completed in black ink?

I breathe deeply and ask myself what would the Dali Lama do?  He would definitely not hurl himself off the nearest bridge screaming colourful obscenities, attractive though that is.  I decide he would chose to ignore the card requirement thing and send in Form FT1, just to see what happens.

I do this.

Nothing happens.

Admin and autism is an exercise in back-weaving into a blackhole of red tape designed to strangle anyone naïve enough to get too close. 

I'm stubborn enough to not give up, but I doubt that rarefied monks in cloistered mountains ever have to deal with this shit.  I don't feel bad about wanting to join them.

Apply in writing

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.