Sunday, August 29, 2010

Happy Birthday Planet Autism

I started this blog exactly one year ago.
Time flies, and all that.
Luckily I am only getting more fit and fabulous with the passage of time (oh go on then, laugh hysterically if you have to...I  know I  will.).
Or maybe I'm becoming progressively myopic with age.
Either way, it's a good place to be, and it's not as hard to look in the mirror as I might have feared.
The changes in my little man (and in our family) over the past year are, with no small sense of relief,  a cause for celebration.

It seems impossible that 12 months ago my almost entirely non-verbal, incontinent, fabulously handsome son was getting ready to start Big School.
Well, to be  blunt, he didn't give a rat's ass about starting school...but I was worried sick.

But the stars conveniently aligned in our favour, and Bob's Autism Unit, and indeed Bob himself, have exceeded all our hopes.

Bob is thriving at school and can now recognise simple words and make sentences.  He is learning to add, and is, mercifully, toilet trained.
It'd be nice if he could sit still for longer than 3 seconds, but that's just how he's wired up.

Mostly I have learned that I can be convulsed with fear, but still get on with the job.
I never knew I could be courageous.  As I come from a large family, and then married a great fella, there was always someone around I could hide behind.
But when your kid has autism, you can't afford to hide or you'll let your child down.

I'm still afraid of things (the dark, deep water, lack of wine etc) but I've learned not to allow fear to prevent me from trying things.
I know this all sounds like a big pile of psycho-babble poo, but there's  always a grain of truth in a cliché.

In 1933 Franklin D Roosevelt said "we have nothing to fear but fear itself".
He was talking about  tackling the Great Depression, but we could apply his words to any challenge.

Friday, August 20, 2010

The Scales of Injustice

Who invented the bathroom scales?
Surely they are the work of an evil genius.
I imagine he was cackling madly to himself when he secreted an invisible gremlin to stubbornly hold the dial oh,  about a stone, above where I want it to be.
He infiltrated the scales with the most heinous of human qualities.
My weighing scales mock me.

My scales instinctively know that I am a wine guzzling, chocoholic lardass.
But I have a complicated relationship with it.
It is the despised, angry teacher that I desperately want to please.

I abhor waste, and will hoover up the remains on my children's dinner plates, smug in the knowledge that I am averting some global catastrophe by doing so.
Shockingly, the only thing going global is my girth.

It appears, though,  that my weight issues are being book-ended by demanding men.
(are there any other kind???...oops...did I say that out loud???)
On one hand there is the seductive, but malevolent,  temptation  to hide the scales in a drawer and comfortably relax into my cosy folds.
On the other, there is my gym instructor who I thought was really nice until he upgraded my exercise programme from  smugly manageable to sudden cardiac arrest. (These are real levels of fitness they teach them in sadist gym instructor school).
I feel like a pawn in a giant apocalyptic chess game between good and evil.
Or maybe I'm over-estimating the importance of my fat arse.

In order to restore balance in the universe I have committed the ultimate sacrifice.
Not, temptingly, of sending my children to all-year-round boarding school...but I have exchanged the wine and chocolate for my Reeboks.
So far I have lost the princely sum of one whole pound.
But luckily it's not about weight loss anymore, which is fortunate as the whole episode may have resulted in a scales-shaped hole being punctured through my bathroom wall.
I just feel better.

And my turbo-charged Autie Kid who can sprint from nought to ninety in a heartbeat had better watch out.  Mammy is catching up

Saturday, August 14, 2010

It's A Cruel, Cruel Summer

I always knew living with autism was hard but only, it would seem, in an academic kind of way.

                                             (I hasten to add that these are not my arms)

Over the years we've plodded on through the tiresomeness of appointments, struggled to bear the weight of our grief at having an autistic child and fought to master the principles behind the therapies we have to administer.
Having an autie kid brings a whole new level to the meaning of exhausted.
But we found our reserves, drank lots of coffee (and maybe a little merlot) and got on with it.

You hit your stride when you have a kid with special needs and, once you've warmed up, you can comfortably lope along for many, many miles.

We have jogged along many pretty pleasant stretches where we thought "hey, this autism thing is OK".
I can't speak for Bob's Dad, but I have even indulged in a small amount of self-satisfaction that I could do this.
While I wouldn't go so far as to say that I became big-headed about coping with being an autie parent, my hats were starting to grow uncomfortably tight, and there was talk of widening the doors to allow the safe passage of my giant ego.

All it took was for school and services to be subtracted from our happy equation, for the brown stuff to hit the fan.

This is a difficult summer.
Bob is going to sleep late, waking early (sometimes horribly early, like 3am) and seems to be focusing all his energies on developing ingenious escape plans.
There are tantrums that could be measured on the Richter scale, exploratory play that would be better described as wilful destruction and an exhausting cycle of never, ever being able to let your guard down.
I miss school.

We also have to factor in the fact that Bob is growing bigger, stronger and ever more clever.
So it seems we will have to change our game plan for next year if we want to continue our marathon without buckling at the knees.

Complacency with autism can lead to unforeseen meltdown, while our brains have shifted into neutral.
Next Summer we will know to change our running shoes and to switch gears out of our comfort zones.

Saturday, August 7, 2010

I Am Homer. Hear Me Groan.

Your mission today, should you chose to accept it,  requires you to create a brand new word to describe The Autie Day From Hell.
You can restore all your other adjectives to their original factory settings, as none of them do justice to the whole new level of lunacy we reached today.

It was like a giant, autistic, Russian Doll of madness had descended over Co Monaghan... each new level was cracked open and I thought "surely there can't be more", but guess what?
There was more.
And plenty of it.

Allow me to walk you through my day.
Point and laugh as you please.

In the perfect 20/20 vision of hindsight, I shouldn't have climbed into bed beside my daughter late last night for a "quick cuddle".  Especially not after sharing a rather lovely bottle of wine with Himself, filling me with a delicious cosy sleepiness.
I was unconscious after about 4 seconds.
I may have mentioned this before, but sleeping with my daughter is like being battered by a human windmill.  I woke up 2 hours later, curled in the foetal position, whimpering "please make it stop".  
MeanwhileBob had assumed the 'Move-Me-And-You'll-Pay-For-It' position next to Himself, and I marveled at the ability of small children to expand in size, like an evil sponge, to fill completely the bed they are sleeping in.  Some clever physicist must have written a law about it.
I observed the painfully learned wisdom of Let Sleeping Bobs Lie, and concluded that it was safer to risk bodily injury from my daughter, than the ear-splitting outrage of a displaced autie kid.
People have walked to the gallows with more enthusiasm than I trudged back to my daughter's bed.

So I woke up this morning feeling like I'd done 12 rounds with an unusually skinny heavyweight, and then the real circus began.

I had just finished my second mug of tea, when an ominous silence descended on the house.
Experience has told me that this can only mean water.
With no small amount of trepidation I sprinted upstairs, only to find an empty goldfish bowl next to the recently flushed toilet...Bob was nowhere to be seen, but it had his modus operandi stamped all over it.
These are the same goldfish I found flopping about the floor yesterday after Bob emptied their bowl on top of himself.  I was sure that having survived that, they would live forever.
As Forevers go, I would feel pretty short-changed to only get 24 hours of it.
So the goldfish have been prematurely jettisoned into Fishy Heaven.
(Or flushed down the jacks, as my oldest son less poetically put it.)

We all got dressed, lamented over the dearly departed, and had breakfast.
More tea was made, the laptop was switched on and we resumed our favourite game of Redress the Streaker, which has become a regular pass-time chez Bob.
I returned from a search and rescue mission to find Bob's clothes, only to discover my lovely pink laptop wearing the tea I was trying to drink.  Bob was looking very pleased with himself.
Apparently, pink laptops don't like tea as it has been sulkily refusing to work ever since.  I said a prayer of thanks to the patron saint of extended warranty (St Harvey Norman, I believe) and tried hard not to dispatch my child by express delivery to somewhere far, far Jupiter.

As the day wore on, the hoover was dismembered and it's contents were artfully displayed throughout the hallway.  Juice was requested and poured over the sitting room floor.  Dinner was made and not eaten.  My older kids couldn't put a drink down for a moment without Bob tipping it over.
My patience had long since packed a bag and said "I'm outta here" and I thought "this is it...I am finally.  Going.  Mad".

But from somewhere deep inside me (probably from my last shreds of sanity), a question bubbled up.
Why was Bob behaving like a small God of Destruction?
I'd love to say I had a delightfully satisfying "A-Ha!" moment of clarity, when the common denominator of pouring occured to me.
What I felt was more a forehead-slapping, Homer "Doh!" moment.
All day Bob had been trying to tell me that he wanted to pour, and I hadn't seen it until the house (and my mental health) had been reduced to a sodden pile of rubble.
You'd think after living with autism for 3 years that I could read the non-verbals.

Anyhow, peace was restored when I produced a basin of water and a couple of jugs so Bob could pour with happy abandon.

After he had soaked himself, the decking and an 8 ft circumference around him, a trip was made for some emergency chocolate shopping.  Not for the kids, but for myself.

So, back to a single word to describe that day?
I'm going with "D'OH!"