Sunday, March 1, 2015

Autism and The Wall

A long time ago, in a land far, far away, two adventurers found themselves at the business end of enemy swords in a foreign land.
A court hearing was hastily scrambled together, but soon fell into disarray as nobody spoke each other's language.  Even the adventurers used different dialects to each other.
It became a political embarrassment, and the judge needed to rule quickly to save his career and his reputation.
He disposed of the debacle by flinging both men into a distant prison.
They were condemned to solitary confinement in adjoining cells, separated by a thick wall through which no voice could carry.
Soon, the men were forgotten about, and life in the foreign land went on.

The men cowered in their cells; dark, cold and silent.
Food was wordlessly slid through a hatch in their door, and their waste was spirited away.

The men tried singing and reciting poetry to ease the loneliness, but their voices bounced off the thick, cold wall and shattered on the floor.
The words stopped, and hope stuttered.
The wall remained unmoved.

The men cried, wailed and gnashed their teeth.
They clawed at the wall and refused their food.
They both sank into an exhausted pit of despair, curled around a manacle of pain that only a human word could ease.
The wall was solid and indifferent.

One morning, on the verge of finally drowning in isolation, one man summoned up a final piece of strength to knock on the wall.
A final goodbye.
To his amazement, through the dense clay, he heard a tap in reply.

Suddenly, there was hope and the possibility of companionship.

The wall was not the enemy.
It was just there.
It became both the barrier and the medium through which they communicated.

I purposely don't put an end on this story because I don't know it yet.
Maybe it's best if we each compose our own.

Wednesday, February 25, 2015

Autism and Depression

There is a well established link between having a special needs child and Depression.
I always loved a bargain, but in this case I really could have foregone  the 'two for the price of one' offer, forcing me to hot step  a crazy balancing act with two uncooperative dance partners.
It's like trying  to boogie with two bags of cats.

Growing up as the fifth of seven children, living in a rural Irish community where everyone knew at least three generations of my family, the skeletons within their closets, who built the closets and what boiled sweets the skeletons favoured, social isolation was something I craved.

Not having the sense to be careful what I wished for, my social life was surgically guillotined (that's a verb, right?) when I gave birth to a bouncing baby boy.
Who continued to bounce.
Most violently.
Off walls.  
Off his own naked body.  
Off other people.

His love of bolting, eating pretty much everything except food, and throwing epic tantrums that would make J Lo blush, very efficiently rendered us on lock-down.
Have you ever  tried bringing an autistic kid to a birthday party?  A sugared-up, carbonated, sensory-overloaded special needs child makes The Exorcist look like Jackanory. 

The isolation I dreamt about was suddenly mine in all it's technicolour glory.
But it was not one of idly flicking through classic literature on a balmy veranda  while sipping earl grey.
Isolation looks like this;
On the school run I could no longer have a chat with the other mothers as my car was kept double-locked from the outside and child-locked from the inside.  It took my older kids half and hour and the tenacity of  a master safe-cracker just to get into the car.
I was exhausted from sleepless nights watching Bob the Builder in Swedish.
My nerves were stretched like piano wire from being on constant alert for an MIA alert.
I was a human meerkat on acid.

For added interest, I also suddenly found myself unable to work, stumbling under financial strain and being chewed internally by constant dread of the future.
I had, in my own kitchen, created the perfect storm for depression.
No need for a lab or anything.
Go, me!

Of course not every special needs parent has Depression, and you can enjoy all the fun of  mental illness without the extra-bouncy kids (Depression is an uncomfortably old acquaintance of mine).
But a quick poll among special needs parents and The Rest of the Population will reveal a great many more happy pills rolling about in the handbags of one of those groups.

Social isolation on it's own may not cause you to descend into a pit of pain and hopelessness, but when that guillotine falls it leaves a mess behind that is difficult to clean up with your brains  in a basket.

When you lose your head, you really lose your head.

The loneliness takes courage and a lot of support to deal with.
It starts with dredging up the energy to have a shower, brush your teeth, put on clean clothes.
Often, you need a loving someone to coax you into doing this.
Medication and therapy also help.
Having friends who won't mind if you cry like a big old baby in an Applegreen service station off the M1 is also  a solid foundation to work from. 
It takes introspection and and the ability to see the larger picture.
It takes quiet insights, with the courage to put yourself out there.

Depression, in the most difficult of ways, is a way towards healing, acceptance and growth.
It's a rock you can't go around, but must chip your way through, bit by bit, cliché by damn cliché.

While I don't have any answers or wise words to offer, I do know that learning I can deal with Depression and a special needs child gives me confidence I never had before.
I trust my family, my friends and my own judgement, even on my bad days.

There's nothing gracious about the jig I'm dancing, but honesty has an unexpected dignity all of it's own.

Monday, February 16, 2015

Autism and Team NoSleep

I've become an expert speed-sleeper since Finian was diagnosed with Autism.
I've learned that snatching five minutes while waiting in the car for a child can prevent Nice Mammy from doing a Jekyll & Hyde into an incoherent, slobbering mess, screaming for coffee and a little bit of peace and quiet.
I have perfected catching zeds on buses, in meetings, behind large books.
I'm pretty sure I could sleep on a clothesline , if pressed.

Mention the word "sleep" to a special needs parent and (assuming said parent is awake) you'll be met with a mixed reaction of  confusion, hostility and an inability to make decisions.

Confusion because they're not quite sure what sleep is.
Hostility because they hate you for getting some.
Loss of decisiveness because they don't know if they should swallow Xanax or caffeine, and sometimes either (or both) will do.

For the best part of a month over Christmas, Finian's internal alarm was set at 3 am.
That meant he was up at 3 am.  For the day.  Every day.
That meant that James or I were up at 3 am, for the day, every day.
It meant we almost ran Columbia dry of coffee beans, and kept a divorce lawyer on speed dial, just in case.

After several weeks of moonlighting, he eventually started to sleep at fairly regular times again.
In our damn bed.
Initially, we couldn't care less if he slept suspended upside down in his wardrobe like Batman.  We were beginning to feel less like extras from The Walking Dead, and regained the ability to speak in full sentences and remember each others names.
Good times.

But, by the time we had made good our sleep deficit, we discovered that a ten year old boy was exercising squatters rights in our bed.
Cuddly and gorgeous though he is, a large child lying between husband and wife is not listed in the top ten of How To Have A Happy Marriage.

I managed to assemble enough brain cells together to shamelessly rob a token exchange system they use at Finian's school.
Each night he goes to sleep in his own bed I give him one token (they're actually poker chips, but I'm going to hell anyway so who's counting).  When he collects three tokens he can exchange them for a trip to our community centre where he can have three turns in the lift.

...unless you're Finian and you sleep in your own bed...then you can take all the damn elevators you want

Each night it's taking two and a half hours for him to sleep in his own bed, but in all that time there are no raised voices, no tears and I don't feel like Bully McBully from Ballybully forcing him to do something against his will.

I have to sit on the stairs outside his room.
I lose count after the first hundred times I ask him "do you want to get your token in the morning?" when he tiptoes out of bed.
But the result is worth it.
Every time, without fail, he decides that he wants the token more than he wants to sleep in my bed.

I'm kinda kicking myself that once again (I never learn) I underestimated his ability to grasp the whole concept.
That the mis-firing exterior Finian does a neat job of concealing the smooth machinery that's working perfectly well on the inside.

And if we die from Altitude Sickness after one ascent too many in the lift, then at least we'll die happy and well rested.


Wednesday, February 11, 2015

Autism and the Dopey Spider

I have often heard those with special needs being referred to as "slow learners".

It's true that Finian can't comprehend society's fixation with Kim Kardashian's alarming arse.
He can't add and subtract enough figures to cause a banking crises.
He will never understand religion, and so will never hate anyone enough to burn them alive in a cage.

I wonder how many lifetimes will it take to teach us "normal" people (the ones who lie and cheat and steal) what this disabled ten year old kid already knows.
The one who is a "slow learner".
The who who fearlessly loves without agendas or conditions.

So far he has been gracious enough to teach me that most of the crap I consider a problem, is not a problem.
He is a patient (and persistent) teacher.

He has taught me that chocolate hand-prints on the wall are not a problem, but bloody ones are.
I have learned that screaming during a painfully tedious school play (him, not me) is no big deal, but running out in front of a bus is.
I now know that not living in a house ripped straight out of the pages of 'Perfect Home' is fine, and that living in an untidy home full of love and mis-matched cushions is great.

Most of what I consider important, is not important.
Like the best story-teller,  he adopts the "show, don't tell" approach.
He reserves his few words for the important stuff, like hot chocolate and ice cream.

I am a frustratingly slow student, and sometimes I cry and throw tantrums and drink wine in an attempt to avoid his lessons.
But they keep on coming.
If I remind myself often enough to stop being so obtuse, that surrender is not the same as giving up, then I will stop wasting time and energy resisting, and open my heart and ears to learning.
Finian is living embodiment of 'don't sweat the small stuff' and I can only hope that a little of this will finally rub off on me.

Finian is beautifully free from the web of conditions, protocols and unattainable goals that weigh us down and eat us up.
He has attained a level of wisdom that most of us could not hope to achieve in one lifetime.

Y'know, the grandfather of modern physics, Albert Einstein, was once labelled a slow learner.
When people finally listened to him, he altered the entire course of scientific thinking.
Imagine what the world would be like without silicone butts, thieves wearing Armani and religious fanaticism?

And with Finian in charge, there'd be a whole lot more chocolate.

Wednesday, February 4, 2015

Autism, Hair and Greek Mythology

When I went to get my hair done in my in my lovely salon (Bella in Carrickmacross, for any locals...check it's excellent), I knew Oana would coax out the badger that had taken up residence in my roots and send me home with a spring in my step.
What I didn't expect was to be offered an alternative way of viewing Autism along with my head massage.
Sometimes you just get things that aren't on the menu.

Oana was a teacher in her native Romania and she told me a story about Procrustes, a Greek mythological figure with bit of a chip on his shoulder.
Procrustes lived on a crossroads, crouching by his big old iron bed.
When a traveller wanted to pass through the crossroad, they first had to lie down in the bed.
Surely a weary traveller would love a nice lie-down before he continued on his journey?
But Procrustes was a disagreeable sort of chap and insisted that the traveller had to fit the bed perfectly.
Too short?  No problem!  Procrustes always kept a rack handy to stretch the shorties into a neat compliance.
Too tall?  Old Procrustes dealt with this efficiently by hacking off whatever few inches of hapless traveller were messing with his Feng Shui.

Even the Greeks knew that if we force someone to conform to our standards, that the result is not a happy one.
Forcing a square peg into a round hole mutilates the peg until it is a disabled, disfigured mess, unfit for purpose.

I purposely use the word "disabled".
Oana asked me "Tell me, does your son feel disabled?"
I had to answer "No, not at all.  He's one of the happiest (if maddest) kids I've ever encountered".
"Then, if your son does not feel disabled, it is those who label him, those who force this standard on him, who have the disability.  They cannot see him for who he is."

Luckily I was sitting down, or I would have fallen down.
You know all those clichés about clouds parting, fogs lifting and scales falling from eyes?  Well, they all happened together.
It took me several minutes, and some extra hairspray, to recover.

All in a day's work for my lovely hairdresser.

I'm very lucky that Finian's school are entirely child-centred and that they build his curriculum around him.
I know they love and celebrate his strengths while breaking down the tough stuff into bite-sized chunks.
It fills me with terrified relief at how easily he could be in a home or a school that are squeezing and manipulating the life and soul out of him to fit their standards.

I feel like Finian is living a charmed life, and he is very kindly taking me along for the ride.
I was a reluctant companion in the beginning, but I'm getting to enjoy the journey more and more.


Thursday, September 25, 2014

Science, Art... or Tigger?

I have a confession to make.
I can't explain what Autism is.
I've only been swimming in a sea of special needs for close on 10 years now, so it would be reasonable to assume that I know what I'm dealing with at this stage.

Except for the small matter of not having a clue.

I'd prefer to to have a lash at translating the Dead Sea Scrolls from Aramaic into Klingon.
I'd sooner teach quantum physics to preschoolers using crayons and play dough.
I'd rather grow a beard (not so difficult actually, now that I'm peri-menopausal) and explain the plot of Ulysses to earnest, flea-bitten students.
Are you feeling my vibe that I'd rather not do it???

About 8 years ago I became very familiar with the Triad of Impairments, which describes impairments in imagination, social relationships and communication as the three-legged-stool upon which Autism drunkenly wobbles.
It appeared in every article I googled and formed the basis of Finian's eventual diagnosis.
I don't usually have a graphic of the Triad of Impairments handy in my make-up bag, but just in case you're feeling a little curious, here's the very thing.

for your viewing...erm...pleasure

Succinct, isn't it?

And despite all the jargon, I still can't find my son in the tangle of "impairments" and "lack of"s.

Describing him as a list of impairments is just wrong, on all levels.
I understand that professionals need to tick boxes to get a handle on a child they don't yet know, but whipping out a copy of the Triad of Impairments when my friends asks why Finian can read car registrations in Irish, but can't tell you he feels hungry, does nothing to answer their questions.

So, over the years, I've attempted to formulate my own definition of Autism.

I'm suspicious that if Finian's lower legs were x-rayed that they'd discover he has tightly coiled springs where his tibia and fibula should be, so for a while I described Autism as a condition where you have difficulty with self-regulation.
But after a while I felt like I was describing a constipated grasshopper, so I dropped that one and went back to the drawing board.

Finian's sensory processing disorder is a very obvious aspect of his Autism to observe, so for  a while I used this as the donkey to pin the descriptive tail to.
I would say "he strips off because he perceives his clothes as uncomfortable, or even painful"  or "he can't eat fruit because the texture makes him gag".
But as time went on I thought, maybe he just doesn't like fruit and maybe jocks from Pennys scratch like medieval hair-shirts.
And not liking Friday Night Eighties being played too loudly on the car radio is not so much a sensory processing disorder as an expression of excellent taste.
You don't have to be autistic to know that some things are just crap.
So I dropped that one as a handy sound-bite to explain away my child's behaviour.

I have particular trouble when my young nieces and nephews ask "why is Finian jitterbugging like a 70's disco-ball on acid?"

I can't really refer  a four year old to a dusty tome about developmental delays,  so I usually respond with something like "erm...he's extra Tigger".  

Surprisingly, they buy this.
But maybe it's not so surprising.
Adults tend to over-complicate things, and it's possible that Autism isn't really that complicated at all.

Maybe I have been blessed with an exuberant cacophony of  energy, light and sound that no medical book has yet been able to pin down.
I'm beginning to see that it's artists, and not scientists, who will eventually perfectly capture the essence of Autism.
Or maybe a four year old niece will get there before them.