Autism & The Myth of Independence

I knew this morning was going to be busy.  

This should have worried me.  When I'm busy, I'm the sort of person who falls going upstairs, stabs myself with my own bra and forgets what I'm saying mid-sentence.  

Despite this, I remain an optimistic idiot.  I'm like a human golden retriever, only with half as much legs, marginally better breath, and about the same amount of hair.

My Busy Morning unfolded as expected.

First, my own saliva tried to murder me by going down the wrong way.   This is not the sexiest way to expire.  I'd like to imagine I'll die of a fabulous Victorian wasting disease, or from eating too much Belgian chocolate off Brad Pitt's belly.  Choking on my own spit was never on my Sexy Death list.  Not a cool start to my day.

I survived this near-death experience, but immediately kinda wished I hadn't; the heel of my favourite boots broke.  

Whoever wrote The Book of Revelations neglected to mention the real reason the horsemen of the apocalypse were in such a bad mood; those headless bad-boys woke up one day to engage in some light-hearted hellraising, but discovered they had knackered shoes.  This pushed them over the edge from being a little bit grumpy to unleashing war and pestilence upon all humankind.  

I totally get this. 

Bad shoes and Armageddon make obvious bedfellows.  They certainly did in my hallway this morning.

Finally, I caught my hair in the car door.  This trick required a dextrous combination of skill and timing, so I'm actually more than a little proud of pulling this one off.  Yeah my scalp hurt, but it's nice to know I could cut it as a circus act if the whole wife and mother gig doesn't work out.

If anyone had been watching other than Finian, I might have been a little embarrassed. He was utterly unmoved by my lapses from grace, though.  His need to be accepted by the crowd reposes peacefully in a dreamy, distant landfill.

I envied his utter lack of concern with appearing cool.  He didn't feel harassed by the urge to fit in.  I briefly felt jealous of his independence.

Even though I'm quick to trip across my own knickers, I'm slow to process ideas.  The notion of independence, and what it really means, stewed slowly beneath my busyness.  As the day wore on, I began to question the degree of nobility we ascribe to being independent.

Really, the whole notion of independence is kinda crap.  

Independence is a fake aspiration created by capitalism and the breakdown of our natural, tribal co-existence. 

It's sold hard by the western culture.  We are applauded for not needing anyone, for being utterly self-reliant and for disdaining inter-dependence.  

We have been told for decades, maybe centuries, that we want it..... so like good little consumers we believe we want it.

The truth is the we do need each other, though.  We are pack animals, and attempting to live as independent entities is making us sick, personally and collectively.  Independence is a myth we buy into.

Unless you're Finian, that is, and independence means not being embarrassed by a mother who farts when she sneezes.  

It seems independence is a subjective notion.  I hope they never let me write a book about it.

"we shoulda got Jimmy Choo's"

Autism & Adult Services

We are deep in the trenches of planning Finian's transition from school to adult services.

We had another meeting today to try to shuffle things forward an inch or two.

It's tiresome, and built with a matrix of uncertainties and wait-and-see's.  So far, though, no-one has given us the bum's rush out the door.  I'll take my positives where I find them.

All the professionals we meet are lovely.  I have no doubt that they are all fighting in Finian's corner.  It's not the people within the system who turn the road into treacle.  It's the system itself.

Our already complicated lives are further perplexed by having to repeat the same information to multiple teams, multiple times.  I lost track of which team serves what purpose ages ago.  When you're preoccupied with raising a special needs kid, extra layers of red tape tend to get lost in the haze.

The process is arduous and anxiety-laced.  This is bearing in mind that, as supports go, parents are not all placed on a level playing field.

It is with something close to guilt that I'm aware I have the support of a great husband, close friends and dear family.  We can comfortably manage to pay the mortgage and put food on the table.  We have the benefit of education to help us navigate the criss-crossed waterways of disability services.  Finian is as healthy as a grass-fed ox, with no extra conditions tangled up with his autism.  Our older 'kids' are thriving, (almost) independent adults.  

And we find it draining.

I find myself thinking about the parents who start out on the back foot.  The single parents.  The ones who worry about paying the rent.  The ones who sweat at the supermarket checkout in case their card is declined.  The ones who struggle to comprehend the layers of bureaucracy-speak.  The ones managing two (or more) special needs kids.  The ones struggling with their own health issues.  The ones who carry the weight of tube-feeding their children or injecting them with insulin.  The ones who cry themselves to sleep with lonliness.  The ones sporting bald patches where their kid ripped plugs of hair from their scalp.  

I'm not diminishing my own experience, but the balance of good fortune is tipped in favour of some.

While I'm deeply grateful for the supports I have, it's kinda crap knowing that not every special-needs parent has these.  

Unfairness is part of life.  But that doesn't make inequity any easier to bear.

Autism & Assessments

Now that Finian is in his final year at school, we're going through the process of figuring out adult services for him.

Progress is slow.

The lack of certainty is anxiety-inducing for him.  We can't tell him where he's going or what his day will look like.  We can't tell him how he'll get there.  We can't tell him who he'll be spending his time with.

His need for reassurances that we can't give him is exhausting for us.  I can only imagine what it's like for him.

The wheels are in motion.  Emails have been sent to faceless people with officious job titles.  We've already had meetings with psychiatric services and occupational guidance services.  We're awaiting a cognitive assessment.  We keep hearing "it takes time".  They're not wrong.

His assessment of needs was tough.  The man who carried it out was kind and sensitive, but it was impossible to sugar coat his level of dependence.  To us, Finian is our funny, sweet, infuriating dynamo.  To disability services he's a set of deficits.  

I understand it's nothing personal.  They need to score him to match him with services.  I guess that's the hurtful part of it...... it's nothing personal.  Charts and checklists miss the beautiful, surprising soul who makes me my Best Self.

It's intriguing that difficult, sometimes painful, processes can help us to grow and see life through a clear lens.  His simplicity and lack of falseness are traits to aspire to.

It's a strange system where humans, especially vulnerable kids, can be reduced to a number on a score sheet.

Autism & Revenge

It appears I created a monster.

A short while ago I wrote about teaching Finian to help with housework.  He's enthusiastically making his bed, learning to use the washing machine, and emptying the dishwasher.  I should be delighted.  

But it's come at a steep price.

I'm undecided if it's his autism, or if he's turned revenge into an art form, but Finian has assumed responsibility for tumble drying clothes with relentless zeal.

He puts everything into the tumble drier.

Everything.

Clean clothes.  Dirty clothes.  Wet clothes.  Dry clothes.  Clothes he just stripped from himself in the kitchen.  (Naked tumble drying is now a thing.  You're welcome).  Clothes that should be air dried and emerge just about big enough to fit the cat.  Shoes.  The entire contents of the washing machine in one load.  The hair-infested dog blanket.  My favourite fucking cardigan.

I've developed a Pavlovian startle response to the sound of the tumble drier.  It invades my dreams.  I've created a niche anxiety disorder about what I'm going to find in the drum next.

Be careful what you wish for, as the surprisingly wise Pussycat Dolls warned us.

It occurred to me that the mafia famously said that revenge is a dish best served cold.  They didn't count on a tumble drier.

where my dreams go to die

Autism & Growing an Adult

I have Finian's head wrecked.

The whole object of parenting is to produce functional adults who will eventually leave us.  That part sucks, but it's how the gig works.

I know Finian will never live independently, but I want him to live as independently as possible.  So I give him jobs to do that challenge him a little, like unloading the dishwasher and changing his sheets.  Hopefully this will deepen his self-trust so that he can tackle more complex things in the future.  I try to help him develop confidence in his own abilities, safe in the knowledge that he can come to me for help if he struggles.  My hope for him is that he will have the courage to move further and further from my safety net.  That he will develop a sense of safety within himself and within the world.  This is where creativity and personal growth flourishes.

Like any self-respecting teenager, he resists like crazy.  He becomes deeply engrossed in his toenails, or urgently needs to watch an episode of The Power Puff Girls, or becomes strangely deaf.  Sadly for him, he's my third kid so there's no get-out-of-jail-free card.  I've heard all the excuses, and none of them fly.

Then, I had one of those light-bulb moments when I realised that I'm going through the same process.  As epiphanies go, mine wasn't as poetic as Saint Paul falling off a horse and being blinded by the divine light of God.  I think I was scrubbing skid-marks off the downstairs toilet wearing a pair of marigolds at the time.  While sweating like a mare through a menopausal hot flush (I suspect God doesn't like women very much.... he definitely seems to favour saints on horses). 

Anyway, I'm also learning to be my own safe space in therapy..... which is pretty much what I'm trying to teach Finian.  I had a happy little nerdgasm when I realised there's a parallel process going on.  It doesn't take much to please me.

Helping Finian to become a functional adult won't be let slide just because he's autistic.  I expect him to become all he is capable of becoming...... including creating inventive excuses to dodge housework.

somebody call Child Line