Planet Autism

The Voice

2012-01-28T18:09:00.000Z

This past few months I've been working hard at taking Finian to the shopping centre by myself...
...as in, without James, my 6ft tall triathlete husband who can handle the physicality of Finian's tantrums with ease.
It makes me feel tremendously secure to know that, in the event of a melt-down, James can hold him and calm him, while I get to stare killer death-rays at anyone who dares to tut-tut at what they no doubt see as a spoiled screaming brat.
Also, staring death-rays does not require me to break a sweat and smooths out my wrinkles, which is always a plus.

But I need to get better at taking Finian out on my own, as naturally James can't be there every time we need a pint of milk.

Going out with Finian by myself are real Feel The Fear And Do It Anyway trips.
I am a wobbly (literally as well as metaphorically), vertically challenged Mrs Punyverse who finds it hard to strong-arm the laundry into the washing machine, never mind subdue a thrashing seven year old who JUST WANTS TO PLAY WITH THE TRAFFIC GODDAMMIT!!!!!

Trips to the shopping centre can be horribly distressing to an autie kid as they can get overpowered by the the constant sensory assaults of lights, sounds, smells and the sense of frantically rushing people.
Over the years he has gradually become desensitized to them, but sometimes he still gets overwhelmed and flips out.

Our Occupational and Speech Therapists advised me to plan short trips and to work to an agenda with a concrete beginning, middle and end.
This aims to give the autistic person a sense of certainty in an unpredictable world.
Because his reading is so good, I write a short list of 3 or 4 places we will visit in each trip, and so far he has felt secure enough with this to cope pretty well.

But going to the shopping centre armed with a scrap of paper instead of a muscle-bound husband feels like bungee jumping off a bridge and halfway down thinking "oops! I seem to have forgotten the rope."

On a recent quaking visit to the shops, Finian attempted to shoplift a packet of crisps while I paid at the checkout.
I was a bit annoyed as I thought son, if you're gonna shoplift, go for rubies or diamonds...not feckin Taytos and I made my apologies to the checkout lady, explaining that he has special needs.

And all of a sudden she adopted The Voice.
You know the one, where people talk VERY...SLOWLY...AND...VERY...LOUDLY... to your child, while you smile back through gritted teeth and wonder would anyone mind awfully if you furnished her with a pair of concrete boots and gave her a short shove from a tall pier.

The rest of that shopping trip went as smooth as butter, and I even managed to calm my murderous thoughts with a cappuccino, while the very well behaved Finian had a coke and chips.

It's always a good day when there is coffee and no homicides.

Full-Time Mum...Part-Time Dragon Slayer

2012-01-25T18:28:00.000Z

My kids sometimes refer to a time in my life, back in the stone age, when I used to be a nurse.

Sometimes my daughter Ellen will frown like she is working out a particularly intractable puzzle and say "didn't you used to be a nurse?" like the notion is so alien that she may as well ask if I used to breathe fire and have scaly skin (although some days that part is true).

"Hey lady, I TOLD you I was pissed off!"

By the time Finian (my third child) was born, it became increasingly difficult to cope with being pulled in forty directions at the same time.
Remember Britney Spears singing "Do You Want A Piece Of Me"? Well that could have been me.
Except for the blonde hair.
And the abs.
And the whole looking-like-Britney thing.
But I can belt out that song in the car like a cat in a bag (being ever careful to protect the ears of the public by only doing so behind sound-proof glass. I was a nurse, remember).

So I surprised myself by deciding to become a full-time mum without feeling the need to gouge my own eyes out and eat my own hair.

Over the last few years I've found that being a full time mum is like belonging to an unregulated sub-culture that has no policies, time-tables or career pathays to define it.
This threw me a bit, as in nursing there are policies for everything, from hand-washing to bum-wiping. It was a bit disconcerting to have to navigate through life's chaos with the feral creatures that are my children, without the comfort of a rule book.
While I haven't devolved into a child-eating zombie who forages in bins and wears her husband's clothes, I have to make a huge effort not to. Somedays I even look quite nice and can manage to trick people into believing that I know what I'm doing (the fools!!!).
It can be head-wrecking and frustrating trying to figure out which direction to go in, and learning to throw away the procedures manual and trust my instinct has been the most difficult transition of all.

But I get to make (and break) my own rules as I go along, and I can take as many tea-breaks as I like without upsetting the union.

Being a full-time mum has surprised me by being rewarding, enriching and really good fun.
I get to wipe away tears, slay dragons and have the most delicious cuddles on the sofa watching Bob the Builder.

Plus I get to sleep with the staff, which was never encouraged when I worked in a hospital.

Psychosis is this season's Autism

2011-11-13T09:51:00.001Z

There's a lot of great stuff written on autism, but it can be tricky to tip-toe past the loopy (but hugely entertaining) books with shouty titles like "I Kicked Autism's Arse And I'm Not At All In Denial" or "My Child Caught Autism From A Toilet Seat".

An excellent trick to save time is to avoid autism books with animals on the cover.
Also, if the title includes the words "cure", "vaccines" or "alien abduction" they're generally only good for use as a door-stopper (if they're thick enough).

Simon Baron-Cohen was one of my favourite writers on the subject of autism.
I could always rely on him as a voice of reason in the crazy swirl of autism literature.
But now he's gone as mad as the rest of them.

He recently wrote a book called the "Science of Evil" in which he explains that committing evil acts arises from a lack of empathy (can ya see where this is going?) and that human cruelty has a scientific basis.
He compares autism to psychosis.
I can't claim to have read the book, because he lost me when he tries to redeem autistic people by applying some strange positive/negative empathy scale to their acts of cruelty...including an example where an autistic person punches a baby to stop him crying. But that's alright because he had positive zero empathy. Or something.
Try telling that to the baby's mother.

But the bottom line is that most people will read the blurb at the back of the book and conclude that people with autism are psychopaths.
If anyone other than Baron-Cohen had written it, I'd have a good laugh about it.

But I'll be too busy buying some fava beans and a nice chianti with my little psycho to worry about it.
Have the lambs stopped screaming yet???

I've Created A Monster. Whoops.

2011-11-06T10:36:00.000Z

I feel a little God-like this morning, owing to the fact that I have created a being in my own image.
Let's ignore that this creature is a master-manipulator and genius executioner of cunning plans.
Allow me to bask in my divinity for a few moments.

That was nice.

Now for an uncomfortable bump back to reality.

Finian is using my autistic stealth bombs against me.
Phrases about worms turning and the servant becoming the master are bitch-slapping me around the head with gleeful wickedness.
It's no way to treat a small god.

I was in the process of getting my Imp of the Devil a healthy ~~boring~~ breakfast when he used my "first ....., and then...." shtick on ME.
Except his was "first hot chocolate, then chocolate toast" (you seeing a common theme here??).
What the...???

Frankenstein has nothing on me.
He just cobbled together a lumbering jigsaw of mismatched body parts (I suspect the same blueprint has been used to create many of us) who suffered from poor dental hygiene and parental separation anxiety.
Finian has no such problems.
I think my work here is done.

Happiness Is...

2011-10-17T20:35:00.000+01:00

When Finian came home from school today, I just finished listening to (yet another) particularly gloomy news report about the economy. The wind was howling, the rain was lashing fiercely against the windows and all in the world seemed grey and hopeless. I was feeling scared, angry and helpless when in bounced Finian.

He zoomed around the house, squealing with excitement, practically pinging off the walls with joy.

Instantly, my day grew brighter and I could see that there was good stuff in the world worth living for.

So I got to thinking about happiness, and it seems that it's all about expectation.

Back when life was nasty, brutish and short, I imagine that happiness was surviving til tea-time, free of bubonic plague, with a full complement of limbs.

In times of famine, happiness is a full belly.

In times of war, the possession of a beating heart and functioning lungs is as good as it gets.

But it seems that the further removed we become from the simple act of living, the further removed we are from what it means to be truly happy.

The satisfaction achieved from putting food on the table, and protecting your family from imminent death, has been replaced by a nagging emptiness that will only be filled by an iPhone 4.

It seems that humans eternally strive for happiness but are incapable of achieving it, or at least of holding onto that slippery emotion when we do experience it.

Yet, why do we constantly search for it when it is just another emotion to be experienced and enjoyed?

All emotions are transient, and I think that's a good thing.

Happiness feels good, so of course we want more of it. But it's a tall order to expect 24/7, thousand watt Happiness in a life filled with the colour of failure, hope, disappointment, excitement, anger and a whole stew of other emotions that are equally valuable. Experiencing a thousand different emotions every day is normal and makes us richer, more interesting people.

"Maybe I like the misery!"

If we lived in a permanently chilled state of Utopia, we would never experience the niggling doubts that urge us to challenge, create and improve. Being slightly unhappy needles us into action that can have wonderful consequences.

If Thomas Edison was happy to sit in the dark, we'd still be reading by candle-light.

A vaguely unsettled feeling of unhappiness gives us a creative itch that has filled the world with art, books and technological advances.

Striving to achieve happiness is big business, and there is a market thriving on our desire for it.

Businesses create a need for eternal youth, beauty, thinness, sexiness, achievements and wealth (which most of us, most of the time, manage pretty well without), if we spend enough money and buy enough of their product. But regardless of what the product is, the underlying message is that you're unfulfilled without this...this will make you happy.

Oh really??? A face cream filled with bat-shit and horse-piss (patent pending) will render me prostrate with bliss??

An architecturally perfect house built with custard and rolled-up newspapers will have me writhing in ecstasy?

A malnourished figure that has me demented with hunger and crumbling with osteoporosis will have me bursting with joy?

I don't think so.

Happiness comes and goes, like any other equally valuable, if less comfortable, emotion.

Finian's happiness is not dictated by the possession of an iPad, or a healthy bank balance, or back-slapping popularity.

He's happy because he's here.

It's humbling, and wonderful, that a gorgeous autie kid reminded me of that.

Favourite Kid Syndrome, Anyone?

2011-10-14T10:09:00.000+01:00

In the last few days I became uncomfortably aware of an article doing the rounds promoting the notion that parents have a favourite child (apparently there's a guy promoting a book about sibling rivalry, which I don't need to read. I have three brothers and three sisters and basically we learned to eat fast and run faster).
While it's an intriguing topic, it initially had me running screaming to my favourite river in Africa (Denial) with my hands over my ears and my eyes squeezed shut.
But it got me thinking.
I really feckin hate when that happens.

While I was doing the damn dailies (housework in Dr Phil-speak) the question popped into my head with unwelcome frequency, clawing the inside of my head for an answer.
Do I have a favourite kid?
How is anyone vaguely human supposed to answer that?
Give them a gun with three chambers and two bullets and may the best (and favourite) child win?

It took me a few days (the cerebral cogs are pretty rusty) before I realised that it's a really stupid question.
For most parents.
I'm sure there are some who do favour a particular child, may they be forever cursed with frizzy hair and bad shoes.
But most of us don't.

I hold my hands up to treating my kids differently.
Not to the extent that one will get a sorrowful "tut, tut" for burning down a school while another will be grounded for eternity for smelling a bit strange, but I am mindful that I use different approaches with the three of them in response to similar situations.
But that's because they're different people, not because I prefer one to the other.
For example, Jimmy (14) will give me a big old bear hug after we have a row, we'll have a chat and then all is well with the world. Ellen (11) on the other hand, practically needs to be sedated if I raise my voice an octave to her. Ergo, while it's not useful or productive to yell at Ellen, sometimes I have to bellow like a dying ass at Jimmy just to get him to register my existence.
Every evening I line up a small row of sweets on the table as an incentive for Finian (7) to do his homework...much as my older sproglets would love if I did this for them, I expect them to complete their homework without the need for a dangling carrot (or *ahem* less wholesome, but much more attractive, sweets). This could be misconstrued as favouritism, but it's nothing more than employing different tactics with different kids to produce the same result.
(disclaimer; to my knowledge, none of my offspring have been involved in the conflagration of any educational institutes. Please don't sue me.)

My obsessive brain is incapable of of just letting an uncomfortable topic go, so I tried to be logical and reason that perhaps we favour the child who is most likely to survive to adulthood and produce grandchildren.
So far, so Darwin-tastic.
But that doesn't explain the intense protectiveness we feel for our special needs kids, who are unlikely to grace us with grandchildren and who may leapfrog past us into an early grave due to underlying ill health or risky behaviour (feel free to refer to my last post about playing chicken with traffic).
Plus to the onlooker it could appear that I favour Finian as his autism demands that I spend way more time with him than I do with my other kids. Most of that time is spent preventing him from killing himself, but it's extra time and attention nonetheless.
So that throws that one out the window.

So I have a conspiracy theory, which is much more fun.
I wonder if it's possible that psychotherapists are planting these stories to ensure a future steady income when our adult kids flock to them with their bruised egos. It seems to me that they suggest that, from the outset, parenthood is an exercise in damage limitation.
Maybe the recession is hurting them too and they feel it necessary to toss a psychological grenade into the family unit to ensure a steady stream of future punters.

So I have an answer to that question.
It's a stupid question, so stop asking it (erm, except for the parents actually do favour a child...those kids are allowed see a therapist).
Parenthood is hard enough without being whacked around the head by some psycho-babbling guilt-merchant.

...although, the devil in me is tempted to gather my Little Dears around me and reassure them by saying "Darlings, you have no need to fret. I hate you all equally."

The Evolution of the Autie Parent

2011-10-08T10:12:00.001+01:00

Leaked reports of ground-breaking research which appears to de-construct the anatomy of the autie parent have been circulating for some time, but finally, exciting scientific discoveries have revealed that the body of the autie parent is, indeed, different.
A unique evolutionary pathway appears to be emerging in a human sub-group, aka the autie parent, in which accelerated anatomical changes occur which enhance the subject's ability to survive their offspring's diagnosis of Autism Spectrum Disorder

It has been suspected for many years that when autie parents return their battered bodies from whence they came, that their anatomy could be identified immediately by the following peculiarities;

(1) Adrenal glands so enlarged that they have developed their own gravitational field.

If you are bothered by small planets circling around your midriff, then you may be suffering from this chronic condition.
Recently my son made like an amoeba and split from the back seat of our (stationary...what a stroke of luck!) car and engaged in a thrilling game of chicken with the on-coming traffic. I was more intrigued by the expressions of the horrified drivers as they watched a seven year old steak of lightening (not nude for once, phew!) being chased AND caught (yes, I've still got it people) by a 40 year old Monaghan Mammy who can still move goddammit when she has to.
Gotta say I felt a little smug that I collared him before he reached the bus he was sprinting towards, which in retrospect was probably in an inappropriate response to a potentially life threatening situation.
I concluded that I am in such a state of perpetual fear, that my horse-whipped adrenal glands have expanded, exploded and, finally, collapsed in exhaustion.
I just don't do fear anymore.
That's not to say I am afforded the luxury of not caring. I still get to worry about his usual wall-climbing, jail-breaking, glass-eating stuff. My engorged adrenals decline to pump out stress hormones in response to a flight/fight situation because they just don't have any left.
I have affectionately named my adrenal glands Elvis, as ladies and gentlemen, they have left the building.

(2) The presence of a gizzard, normally only found in animals for whom storage of food for later consumption is vital for survival.

Eating an entire meal in one sitting is an impossibility.
The ingestion of nutrients is subject to numerous interruptions for essential bum-wiping, urgent laptop maintenance and apprehension of runaway children (see above).
The evolution of a gizzard allows the autie parent to avoid starvation, and in an unforeseen development, has multiplied the sales of antacids exponentially.

(3) The presence of a bladder so distended that it can double up as a handy trampoline.

Scientists speculate that this evolution has occurred in response to the autie kid's love of jumping in conjunction with the autie parent's inability to pee in case said child burns the house down/eats firelighters/pours cooking oil over the dog.
This development is thought to be a clever symbiosis between the parental instinct to protect the child and the child's desire to perform back-flips on his parent's abdomen.
Manufacturers of incontinence products have benefited enormously.

(4) Dermal calcification

This peculiar anomaly has caused much head-scratching and beard-stroking (mostly of their own, but they're a friendly bunch) among the scientific community. Skin so thick it appears bone-like has been identified as a feature exclusive to the bodies of autie parents. It has been postulated that this has evolved to protect the autie parent from the burning gaze of judgemental passers-by as they wrestle with their high-octane, fully leaded screaming balls of fury (by this, I mean their children, not their actual......maybe I should rethink this metaphor).

(5) Asystole, often in conjunction with sudden onset of hypothermia

Curious to the autie parent is their uncanny ability to survive asystole, a cardiac condition in which all electrical activity ceases and the heart stops beating.
In most humans, this condition is incompatible with life, but recent research suggests that the simultaneous freezing of the blood in response to an extreme stressor may allow the autie parent cheat the Grim Reaper until their child has been snatched from the jaws of death.
Again.
This research was prompted by the frequent remarks made by autie parents to the effect that their"heart stopped" and their "blood went cold".
The scientific community is divided on this phenomenon, with some scratchy-beardy types unhelpfully referring to the sometimes cold-blooded autie parent as the "lizard with a gizzard".

More investigation is required, but since the subjects selfishly prefer to wait until they have expired to allow themselves be autopsied, the mystery of whether the autie parent is evolving into a new sub-species remains an intriguing one.
Scientists remain tight-lipped until their findings can be verified, but if you spot an adult human (often in the company of a screaming, but ridiculously handsome, child) sporting the hide of a rhinoceros and asking for directions to the nearest defibrillator, then you may be in the company of evoltion as it happens.

You heard it here first.

Will You Have Some Complication With Your Autism, Madame?

2011-09-04T10:10:00.000+01:00

Everyone comments on how clever our autie kids are, and I smile and agree...

...thinking about how the kid who can google his favourite YouTube clips in four languages has to be forcibly restrained from fishing used toilet paper from the loo and eating it.

Yum.

I sometimes have to swallow the compliments with a double dose of antacid, as they stick in my throat a bit.

Humans are complicated creatures.

We are full of contradictions, grey areas and conundrums.

Shakespeare wrote a play or two exploiting the fact.

But whack in an autism fireball, and the human condition explodes and expands like a brand new universe.

Autism is humanity to the nth degree.

I wonder how Sherlock Holmes would have dealt with autism (aside from locking him in an attic, maybe, which seems to have been the treatment of choice for many years)? I'm not convinced he could solve the riddle of the boy who could escape Alcatraz but would then almost certainly step out in front of a truck as he has zero sense of road safety (there were trucks and Alcatraz in Sherlock Holmes novels...they just don't mention them much).

Plus it would be hard to fit that title on a book cover.

Sherlock might have retired after that one, and spent his dotage cuddled up to Watson muttering about inconsistencies and dualities. Poor Watson. I often wonder if he got his man in the end.

Maybe the ancient tragedies had a better handle on Autism...I mean, Icarus displayed a trait or two when he single-mindedly continued to fly into the sun with wings that didn't have a great SPF factor. Have you ever tried telling an autie kid that running along the top of an 8ft wall is not the best of ideas?? You get a two fingered salute and a come and get me if you're so worried in response.

Plus Medusa with that head of snakes...an autistic tantrum if ever I've seen one.

Maybe Autism has always been around.

These days Spock and Dr House fly the flag.

Spock is relentlessly logical, captain, but just won't get anything done about those ears.

And House, well, if you watch House you'll know...disgracefully rude genius with zero social skills. I should know. I've got one of my own.

Autism is such a simple, deceitful word.

It implies independence. It intends to explain an inexplicable condition in three syllables.

It says nothing about my gorgeous (sometimes genius) poo-eating child who makes complicated seem easy.

So when a compliment sticks in my throat (even though I love to hear them...yes...I'm a contrary human too apparently), it's just because they haven't seen him nude trampolining or being dragged screaming by two adults from a shopping centre because we're going the wrong way!!!!!!.

Way back when dinosaurs roamed the earth, I remember my English teacher trying to teach us about equivocation (the misleading use of a term with more than one meaning, apparently).

I hadn't a clue what it meant at the time...I may have been more interested in how to make my 80's hair even BIGGER, and how to lure Bruno from Fame to Ireland so he could marry me and unite our giant hair-do's.

All she had to do was say "one day you'll have a really cool autie kid, and then you'll understand"

Do As I Say, Not As I Do

2011-07-22T00:13:00.000+01:00

I've been thinking about the things we teach our autie kids that, really, we could do with learning ourselves.

I mean, I try to teach Finian about the intricacies of delayed gratification using the "first (insert word, usually something devastatingly boring) and then (insert word, something fabulous and desirable)" shtick.
It works pretty well too, and he will now eat a healthy dinner before he gets a biscuit and do his homework before getting his iTouch.
You get the idea.
So far, so autie-tastic.

It's just a tad unfortunate that I can't apply the same principles to myself.
I seem to possess a finely honed sixth sense that alerts me to the presence of chocolate, no matter how ingeniously hidden, and forces me to ~~inhale~~ devour it at admirable speed.
It's a terrible affliction, and definitely not greed.
I like to imagine that I'm performing a supreme act of martyrdom by saving someone else from having raised cholesterol.
Really, I should be given a medal, or at least a sainthood (St Jean the Patron Saint of Chocolate Robbers).
When faced with a choice between a tuna sandwich and a Mars bar the size of my arm, my mantra gets amended to "first...erm...chocolate and then...well...chocolate".
When Finian masters the expression of smugness, I will be withered my inability to delay gratification...and I may even lose my halo.
Feck.

Another area I've spent years working on with Fin has been his sense of his own body, where all his bits are in relation to each other and his sense of where he physically is in relation to the outside world.
Or proprioception, if you want to be fancy schmancy about it.
To this end, he has been catapulted onto trampolines, tested the g-force of swings and been ~~forced at gunpoint~~ gently encouraged to dance wildly to hip-hop music containing inappropriate lyrics concerning ladies of the night with large bottoms.
Fin responds really well to BIG movements, so the bigger, faster and higher he is flung the more happy and interactive he becomes. I'm just praying that he doesn't greet his teacher by slapping her arse and calling her a "ho'" some morning.
All well and good.
But I fall pitifully short at taking my own advice.
At 40 years of age, and after carrying 3 hefty babies for 40 weeks each, I'm afraid that I would end up using my bladder as a handbag instead of a receptacle for human waste if I put it to the trampoline test.
If I was capable of shoe-horning my motherly butt onto his swing and flying through the air with the greatest of ease, my ageing inner ear would almost certainly protest by causing me to spew the contents of my last three meals across the concrete.
And as for dancing...well...the last time I danced in public was at a wedding when my brother John and I decided to get the party started by being the first to hit the floor. The spotlight followed our footsteps around the vast, empty floor and the cameraman videoing the proceedings stalked our every move like a seasoned paparazzi tailing John Travolta and Olivia Newton John. The wedding guests gasped, transfixed by our enthusiastic high-stepping.
But for all the wrong reasons.
The video evidence revealed that I dance less like Jennifer Lopez and more like an electrocuted wildebeest on acid, while I seriously wonder if John's limbs don't belong to four different people and they all wanted them back that night.
Sadly, I don't think I will ever again be drunk enough to delude myself that I'm a hot dancer...the amount of alcohol required to achieve that splendid state would result in an acute episode of deadness, thus rendering the exercise null and void.

So I expect Finian to work his sweet little butt off to help him become all that he is capable of becoming, while I get to cower safely on terra firma with a mug of tea and my knitting..
Sometimes it's great being the Grown-Up.
XXX

What Lies Beneath

2011-07-10T00:06:00.002+01:00

Tonight I have to write about depression (sorry Finian, autism is sooo last season dahling).

Mostly my depression is kept under wraps with medication and sound advice from my wonderful GP.
Occasionally, though, despite my best efforts, it sneaks up on me and takes grip and I'd like to try to explain what it's like.
Because I'm fun like that.

I can't get to grips with the fact that on the surface I seem fine, while a big black hole is circling deep beneath the surface.

I can talk, move, work through my daily jobs and care for my family.
I can converse, respond and act appropriately...except I'm not really there at all..

It's as if my true self has become invisible, and I feel impotent rage that no-one has noticed I've vanished.
This rage is utterly unfair, as how can anyone know how I feel if I don't have the words to tell them?
At the same time I crave to become invisible and wish for nothing more than to exist on a bare island with no links to the mainland.

I'm not sharing this to elicit dramatic interventions or rescues.
I can live with depression, mostly quite comfortably, but sometimes it just weighs a little heavy.
I'm just trying to give you a snapshot of what depression is...I suppose to give you a small window (if you want to peep into it!) into my world.

I suppose, like autism, depression is easy to dismiss because on the surface I appear so (*cough*) normal.
We have all heard the phrases "lighten up", "you think too much", "you could snap out of it if you really tried".
I would give almost anything if it was that simple.
I missed my medication one day last week (one feckin day!) and boy am I suffering the consequences.

There's no need for anyone to worry on my behalf, as I will get through this trough, as always.

I don't purposely hide my low-times... I'm just trying to figure out why I bury them from sight in a spinal reflex.
Is it shame at appearing weak?
Is it dread that I will be abandoned?
Is it fear that I am not worth being listened to?

Anyway, I have learned that the only way to deal with episodes like these are lots of chocolate and 30 Rock...plus tea and maybe a glass of pinot noir (excellent for depression, whatever the "experts" say).
I have learned to become accepting of times like these and not to waste time and energy fighting it.
It will pass.
I have learned that I have good (and very special) friends I don't have to pretend with...you know who you are...the ones who don't bat an eye when I cancel going out with you (again) because I'm a bit too mad.

I'm just trying to explain what depression is like as if/when I see you I surely won't have the words.

Right, where's that chocolate?

Things That Make Me Absurdly Happy

2011-07-01T18:47:00.001+01:00

In keeping with my new outlook to live in the Here & Now (as opposed to the big, bad ,scary future), I've been paying closer attention to the things that make me happy.

Throughout the week I used my mobile to capture random moments that gave me a burst of joy, no matter how abstract (OK, strange then) they were.

Here they are, in no particular order. Point and laugh as you will.

This is my teenage son Jimmy rockin' it up on his gee-tar. He has a great ear for music, although he does feel it necessary to play it at a volume that may vibrate the Earth off it's axis.
If we hurtle off into outer space anytime soon, you'll know why.

You know when Maria warbles on about "A Few Of My Favourite Things" in The Sound of Music? Well, she forgot the tea, the book and the knitting.

My lovely mini-laptop...all the more lovely because it's pink and it's shiny. Sigh.

The hens always make me laugh. I envisage them wearing head-scarves and complaining about the price of...um...eggs.
I threatened to take one to KFC because she kept pecking my feet while I was at the clothesline. She ignored me and started pecking the wash basket. They are not blessed with intelligence.
But they do make a tasty Sunday dinner.

This may be the lamest source of happiness on the planet, but a line of washing makes me feel that all is well with the world. Maybe it's the fact that in order to hang washing out, there must first be sunshine...a rarity in Ireland Or maybe it's just the knowledge that at sometime in the near future, my family shall once again wear clean knickers. It's a tough one to call.

Also, please note, the pink wash-basket.

There is a pleasing little double-whammy of joy in this picture.
First is the fact that Finian was able to overcome his fear of the lawnmower to sit on his brother's knee. And that he is sociable enough to want this closeness with Jimmy.
Second, the TEENAGER MOWED THE LAWN!!!

A final pretty little parcel of pinkness.
I was given this iPod and the docking station by my brothers and sisters for my birthday last year.
The iPod is fab as it re-ignited my interest in music and I couldn't be without it when I go walking.
Also, it's pink.

So it was a good week folks. Cheap and cheerful and deliciously pink XXX

Sweating the Small Stuff

2011-06-24T17:30:00.002+01:00

This week I took a few baby steps into the realms of learning to sweat the small stuff, and left the Big Questions to be decided in a cosmic punch-up between Richard Dawkins and the Pope.

I have an annoying tendency to worry about Life, Death and What's It All About, but I think it's time to leave those questions to the professionals.
To this end, I have decided that a boxing match between Richard Dawkins and the Pope will settle all matters and maybe I can get to worry less.

I imagine this is how the fight would go, but it's all in my head so please sue my unorthadox imagination and not my suffering bank account.

(Richard; "Take that Benedict! Carbon dating! Biff!. Fossils! Kerpow! "
Benedict; "Mercy Richard! Peace! Love!Faith! "
Richard; "You mean war, persecution and murder!You might as well believe in the Tooth Fairy!"
Benedict; "You mean the Tooth Fairy's not real??? Noooo!!! And the war, persecution and murder thing was just an unfortunate side effect of a book cobbled together hundreds of years after the Big J was knocking around"
Richard; "That beardy hippie Bam! was a communist who preached that we should love each other unconditionally and own nothing more than the shirts on our backs. Crunch! The exact OPPOSITE of the elitist, multi-billion dollar business of the Vatican! Splat!"
Benedict is getting tired and Richard moves in for his fatal blow.
Benedict; "But...but...faith can move mountains!"
Richard; "Genetics!"
Benedict screams and covers his ears.
Benedict; "Richard, please, no more!"
"Evolution!" cries Richard as Benedict stumbles and collapses, defeated, on the floor.)

But that's just me.
And in fairness, the Pope is at a disadvantage. His pointy hat and flowing gowns do not exactly lend themselves to boxing.

So as I decided last week, I've scaled back on the Big Dreams and the Big Questions and I'm focusing instead on the smaller, more pedestrian goals.
It's not cosmic and it's definitely not sexy, but already the small steps are yielding results.

In the last few weeks Finian has mastered swinging on his own...you can see by his face that he kinda likes it.

Meanwhile, in the garden, anarchy reigned
The rebellious blackcurrants laughed in the face of the Irish summer and ripened regardless. They seized the three minute window of fabulous sunshine and commanded their little purple armies to ripen now! Blackcurrants are nothing, if not opportunistic.
The intrepid James took Finian and Ellen to harvest them, armed only with a bucket, a hat and a shed-load of patience.

Rockin' the hat look

Checking the merchandise

I got a few opportunities to go walking during our unseasonably nice Summer weather, and sometimes I forget just how breathtakingly beautiful it is where I live because I'm so accustomed to it.

"You talkin' to me?"

I bought some wool and knitting needles and have resurrected a hobby I used to enjoy years ago, before the onslaught of rowdy kids terrified me into getting rid of all sharp objects. I had visions of children falling into my knitting basket and emerging looking like overgrown voodoo dolls.

Knitting ain't rock n'roll, but it's relaxing and is a healthier hypnotic than skulling a small lake of wine during the week.

I snatched an hour in a lovely bookshop yesterday and disciplined myself to avoid the science, psychology, educational and self-help sections.

And philosophy.

And the medical and sociology sections.

I came out with three actual novels under my arm that made me laugh out loud at their first paragraphs. They won't unlock the answer to life, the universe and everything, but they will make me laugh. And that's a much more achievable goal.

It would seem that babies know what they're doing when they learn to crawl before they can walk.

Who knew?

Dream Diet

2011-06-17T21:24:00.000+01:00

Adapting to life with autism is a dangerous business, and I used to enjoy indulgent little moments when I'd believed I'd cracked it.

I've read the dreamy books about the autie kid who progresses from being a screaming dervish of poo and vitriol to being a calm, (non-poo flinging) auto-bot who says "please" and "thank you" and definitely never, ever dips toilet roll in the loo and eats it.
That would never happen at the end of these stories.

Dreams like this are seductive, but have no place in reality.
It's just too painful to wake up from them.

They're like having a sneaky hot chocolate (with a flake on the side) when you're on a diet.
Gorgeous at the time, but the rest of the time you're starving yourself and yet still have a fat arse.

Or fantasizing that you're a size 8 genetics professor (who finds a cure for autism) with washboard abs and absolutely no cellulite...who also runs marathons for fun and has read Ulysses and the entire works of Dostoevsky.
In Russian.
This is a lovely little reverie until you open your eyes and realise you're an over-caffeinated special needs parent with breakfast in her hair and barely enough mental energy to focus on the RTE Guide.

Or picturing yourself chatting to strangers about your kids and almost forgetting to mention that your youngest boy is autistic, because autism is no longer a dominant feature in your life. You would laugh blithely and say "oh autism, that's sooo last year".

These are happy little fantastic interludes, but are utterly counter productive.
Because I wake up and wonder "where did my life go?".

My life is so alien compared to what it could be if my little boy was born without autism.
I hardly need to point out that I adore Finian with all my heart (as I do my 3 kids) but four years on from his diagnosis, I am beginning to see that my goals for him and our family are unrealistic, and therefore heartbreaking.

I have to stop dreaming about family holidays, having a family Sunday lunch in a restaurant or (perhaps most tragically of all) wearing heels anytime soon, as I have to be in constant readiness (and therefore Reeboks) to sprint after my lightening bolter.

Dreams can be dangerous, and my feet touched the bottom of a big black hole when I woke up and smelled the coffee.

Four years on and my house is still a triple-locked fortress.
I still have to exercise extreme caution when washing Finian, just in case it's not chocolate spread smeared across his cheeks.
I am not getting any younger, while Finian is becoming bigger, faster and brighter at a dizzying pace.
I'm finding it hard to keep up, and all my big dreams of four years ago now seem naive and romantic.

But out of the ashes, new dreams can flutter.

I am hopeful that when we get our assistance dog that we will manage to enjoy family walks in the park.
I will never run a marathon, but most days I can escape outdoors for a walk around the Monaghan hills.
I can read a book, chapter by chapter, and enjoy it for what it is and not as a job I need to do.

These are all tangible goals that will not break my heart.
And one day I WILL wear heels.

(p.s I've decided to "out" Bob and give my son his real name...he's not quite as besotted with Bob as he was so it seems a little more grown up)

The Future Is Orange

2011-01-13T19:45:00.000Z

Like most special needs parents, I have a constant worry gnawing at the back of my mind.
I worry about what will become of Bob when we get too old to look after him.
Because I'm not equipped (aka minted enough) to set up a private fund for his care, it's become a nebulous sort of unrest that has neither shape nor substance.

It's hard to formulate any sort of a plan for his future as he could be pioneering NASA expeditions to Saturn, or he could be in an institution being spoon fed and watching day-time TV on a loop.
It's horribly impossible to predict.

I don't believe his brother and sister would ever allow the latter to happen, but I also don't want them to feel so responsible for him that their own wings are clipped.
I feel very strongly that they should be allowed to live their own lives, free of guilt or an oppressive sense of duty that robs them of their own experiences.
Of course I hope they will be a big part of their brother's life, but I don't want them to ever feel resentful of him because he prevented them from following their own paths.

But because I have some tiresome defect that won't allow me to predict the future (goddamn it), I just plow on with Bob's education, cross my fingers, throw salt over my shoulder and avoid walking under ladders heaving with black cats.

Not that I'm superstitious.

But I also avoid putting new shoes on a table (that's a mad Monaghan one), moving house on a Saturday and jumping in front of buses.
Hmmm.
Maybe the last one isn't strictly speaking a superstition, but it seems prudent to avoid it anyway.

So I just hope for the best, knowing that even though blind hope just isn't good enough, that it's all I have at the moment.

But I had a reassuring experience at the gym earlier in the week.
I was doing my thing on the cross-trainer, feeling all virtuous for working off the cake and wine legacy that has taken squatters rights on my butt.
(I only have another million miles or so to go before I balance the scales but I was busy polishing my halo and fluffing my angel wings nonetheless.)
I noticed one of the gym instructors welcome a new client and put him through his paces with a fitness test. The new client ( a good looking lad in his teens, not that I was looking or anything) was then taught how to use the various weights and machines, but I was only half-paying attention as I had age-inappropriate rave music belting through my iPod and I was busy pretending I was 23 with abs you could bounce rocks off.

Later, as I was using the weights, the boy came over to chat to me and it was only then that I realised he had special needs.
I had a lovely talk with him about his new year's resolutions and I had to restrain myself from secreting him in my gym bag and taking him home with me.
He was gorgeous.

I'm bowled over by the ease and acceptance with which the gym instructor met the boy.

He didn't hover anxiously around him, or speak to him very slowly in a VERY LOUD VOICE.
He treated the new client with the same courtesy and professionalism that any Normie would expect.
I would never have guessed by the gym instructor's behaviour that the boy has special needs, until I got chatting to him.

This is the future that I aspire to.
One where our special needs kids are truly treated with the respect and acceptance that they deserve.
It's just unexpected that I witnessed that in the gym, and not within an institution or organisation supposedly designed to care for people with special needs.
I guess miracles never happen in churches.

Imagine.
I went to the gym hoping to acquire buns of steel.
But I'll happily settle for being slightly less wobbly and a whole lot more hopeful for the future.

People in Glass Houses

2010-12-28T21:29:00.001Z

Y'know, I think we've got it all wrong with our autie kids.

We are taught to view their supposed lack of social empathy as a Bad Thing.

Many of us are locked in an endless battle with our kids to extinguish undesirable behaviours that make life difficult, embarrassing or inconvenient for us, but which the child themselves have no issue with.
But to what end?

Bob is perfectly happy to play the opening credits of a film over and over (and over), and I have to overcome my itch to force him out of his Happy Place to watch the film "normally".
Why do we accept that we are supposed to train them, like little performing seals, to tick boxes on a psychology chart?
It shouldn't even occur to me to want to change his behaviour just because it makes me uncomfortable, and because I want him to be more like other kids.
It's actually deeply disrespectful of who he is.

He has no qualms about thrashing about like a small (but ridiculously handsome) rhino when he feels caged in a situation that he's unhappy in.
My initial reaction to this is sometimes embarrassment, but mostly I just wish I could express myself as freely. I have wasted so many hours of my life being bored into a coma at mandatory social occasions, and it would be wonderful to throw a tantrum and to scream "screw you, I'm outta here!!!".
And maybe to strip off while I'm at it.

Also, it's a bit rich that I'm teaching Bob how to be "socially appropriate" when I bolt for cover at the mere whisper of a party ...and when I've just replaced my perfectly respectable hallway light with a creation that can only be described as a purple, glittery disco-ball (1970's, how are ya?).
I could teach Elton John a thing or two about left of centre garishness, but that's who I am and I feel free to express myself in my own home.

Bob is allowed to do the same.

But it occurred to me that this lack of social awareness could be a gift that allows the child to focus on what's really important, without being imprisoned by worries about what the neighbours think.
That's the X Factor that has allowed scientists to shine fiercely and artists to produce magnificent masterpieces.
They simply weren't concerned with who complied with what social rule.
They just got on with what they were good at.

By interfering with Bob's Happy Place, I could very well be damaging his development.
So I don't do it.

That's not to say he has a free rein to engage in whatever behaviour pleases him whenever he feels the urge...I may be the youngest hippie in town, but I also don't want to spend my pension fund bailing him out of prison for lewd behaviour.
And he is made to do his homework under strenuous protest, because he is bursting with potential and I would be letting him down by not pressing his gorgeous little nose to the educational grindstone.

So I won't throw stones about not getting the social appropriateness thing.
I'm living in a creaky old glasshouse of my own, but it has a really funky hallway light so I like it fine the way it is.

.

The Clothes Show

2010-12-09T16:36:00.000Z

Lots of autie kids can't bear the sensation of clothes next to their skin.
They may perceive clothes as feeling too itchy, heavy or even painful.
Consequently, a streak of bare flesh zipping through the house at warp speed is a common sight to behold chez Bob.
Usually I locate him by following the trail of clothes flung in his wake.
It's like his bespoke GPS system.

We use de-sensitisation techniques taught to us by our Occupational Therapist (who hasn't been replaced since she left 6 months ago...thank you Irish Economy), but that's really just a fancy way of saying we give Bob lots of deep massages, play tickling games and generally try to expose him gradually to as many varying textures as he can cope with.

A few years ago he couldn't bear to walk on sand or grass, but these days he can handle both pretty well.

(I have argued with Bob's Dad about his "therapy" of depositing our child barefoot in the middle of the lawn and running away... but it became a really great game and seems to have helped. God I hate it when he's right.)

And Bob's doing great.

But the wearing of clothes remains a contentious issue.

Now, if we lived on a sun-soaked, balmy beach I'm pretty sure we could ~~bribe~~ reason with Bob to cover up his bare essentials while enjoying a fabric-free everywhere-else (the kid will do pretty much anything for chocolate).
But the closest we get to balm in Ireland is the tons of Vaseline we smear onto our wind-chapped lips to prevent them freezing off our faces.

While flashing his wares is not such a big deal at the age of six, I'm pretty sure the cute element will have worn off by the time he's sixteen.
The people who giggle at his innocent lack of inhibitions today will be speed-dialling the cops in ten years time.

So I'm working on teaching Bob not only to get dressed, but to keep his clothes on.
It's a slow process, but he loves the high-fives he gets each time he manages to push an arm through a sleeve and the tickles he gets on his toes when he pulls on a sock.

Even though it takes me every ounce of self-control not to "help" Bob dress himself (the job that would take me three minutes takes him fifteen), I'll stick with the programme because I need to foster as much independence in him as possible.

And you never know... maybe by the time that happens this sheet of ice that is coating Ireland will have melted into the grey sludge we are used to.
Well, a girl can dream.

Cabin Fever

2010-11-29T21:23:00.000Z

It's snowing in Ireland.

Proper Arctic stuff that can be measured in inches instead of millimetres.
This happens every year, and every year we flap, panic buy and hunker down as the country grinds to a chilly halt.
Schools close, businesses lock their doors and we huddle indoors unless starvation is imminent or,even worse, we run out of chianti.

Our Scandinavian and Canadian friends must shake their heads in disbelief at how quickly and efficiently we are rendered incapable by a bit of snow.

It's kinda fun in one way, as we get to play at being human squirrels, and have a little unexpected holiday from the usual mayhem of rushing about doing the thousands of Important Things we believe are absolutely necessary....until we're prevented from doing these Important Things and we realise that they're actually not that important at all.

But a curious by-product of our snowy lock-down is that suddenly I have an awful lot of time.

It's a bit mortifying to admit that I am horribly uncomfortable with this.

It's great to be able to read my favourite blogs and keep on top of the laundry (hell, I even go mad sometimes and talk to my children!!! The very thought!) but there isn't much going on to distract me from my mental chatter.

Really, no-one should be left alone with my thoughts for too long.

It's like a horrible interview between Hannibal Lecter and Mrs Beeton on a continuous loop, filled with all my domestic coulda, shoulda, woulda's and the dire consequences of being a less than perfect HausFrau and SuperMammy.

I love a healthy bit of Irish Catholic repression (I mean, what's a stomach ulcer if it means you don't have to deal with uncomfortable thoughts??) and using the busyness of being a full-time Mammy is a great way of making sure that Stuff stays safely buried.
And, yeah, I can hardly describe myself as a Catholic anymore, but I was hard-wired in my formative years to believe that suffering and martyrdom are good for the soul.
(Hmmm...good for the soul, but even better news for people who don't want to hear you whinging.)

So bring on the thaw!
I don't like navel-gazing...turns out my belly button's only full of fluff anyway, not splendid pearls of wisdom.
There's only so much cleaning and playing draughts I can handle before I strap some snow chains to my tyres and take to the roads.

Danger- Autie Kid At Work

2010-11-18T22:00:00.000Z

Over the past few weeks Bob has been hellbent on a mission to disprove Newton's Laws of Gravity.
In addition to his usual ninja style scaling of walls and flooding of bathrooms, he has taken to lighting matches, licking razor blades (yep, you read that correctly) and smashing eggs (ingeniously, down the back of radiators).
This is in addition to his long-established tricks of climbing on the kitchen cupboards, wedging himself between the top of the bookshelf and the ceiling, and wriggling from his big brother's bunk onto the top of the wardrobe.

Did I mention that he likes to climb?
.
Like a shark smelling blood, he is attracted to danger at a five mile radius.

Keeping our autie kids safe devours an enormous amount of our time and attention.
Many autie parents have mastered the art of sleeping with one eye open as their kids have been known to climb out windows, or unlock doors in the dead if night.

As a result we live in a self-imposed prison.

I go about my daily work with a bunch of keys in my pocket, and methodically re-check doors, windows and any possible escape route at regular intervals to try and prevent him running away again.
(Bob is a bolter and has been found heading for the hills on many occasions, despite our every attempt to keep our home on military lock-down. On one occasion a neighbour mercifully returned him to us before we even missed him).
I kinda wish I had OCD so all the checking wouldn't be such a pain in the gluteus maximus.

It's become a way of life for us, but now and again I have to remind myself that this is not normal.
I worry about the effects our hyper-vigilance will have on Bob's big brother and sister, and hope that it will not lead them to becoming anxious, neurotic adults.
Now that Winter is here Bob isn't so inclined to go outside, and although we can't let our guard down, there is less likelihood of him running away at the moment.

Maintenance of safety is an element of autism that is sometimes overshadowed by issues such as communication difficulties and toilet training, but it is relentlessly exhausting and mentally draining to live with.

I am clinging onto the hope, as more veteran autie parents tell me, that safety issues will become less prominent as the child matures, and the benefits of education become apparent.

In the meantime, I guess all I can do is dress for the job and jangle my keys with style.

Fun-Sized Wisdom

2010-11-06T19:46:00.000Z

Throw away your guide books and sack your counsellor.

I discovered my very own pearl of wisdom in the back of the car after horse-riding this morning.

This pearl does not come in the conventional, glossy sphere we are accustomed to. It's more, well...Ellen shaped and definitely talks more than any other piece of jewellery I own.
Ellen is my 10 year old daughter and has had a pretty atypical launch into this world. She catapulted into this unsuspecting planet in one hour flat and was quickly diagnosed as having a ventricular septal defect (a hole between the lower chambers of the heart). Even though cardiologists view this condition as relatively minor, when a paediatrician tells you your newborn baby has a heart problem, and there's a flurry of ECGs, X-rays and echo tests, it feels like there just isn't enough air to breathe.
We spent many years attending the cardiology outpatients in Crumlin Hospital and she became aware at a very young age that not all children arrive in bouncy, healthy packages. She knew that many children were sick and disabled, and that sometimes they died. Not because we told her, but because she saw them. Experience has a more profound impact on a developing psyche than hearing about things second hand, so she grew up with oodles of kindness, compassion and a surprisingly pragmatic outlook that sometimes shit just happens, and you have to deal with it.

When Ellen was seven, just two months after her little brother was diagnosed with autism, the cardiologist found that her VSD had resolved. We were delighted to get some good news after doing the autism circus. Ellen wasn't so impressed.
"I'll miss it" she said.
I can't decide if she missed the fact that having a heart defect, which became a part of her identity, had now vanished into the ether, or if it was the loss of our post-appointment trip to McDonald was a bigger grievance to her (yes, the irony of taking a heart kid to a fast food joint is not lost on me).
Either way, Ellen sees in the world in a direct and madly quirky style.

At school she struggled enormously with language and comprehension, to the point that she needed to repeat a year and get daily extra help with the resource teacher. Dyslexia and intellectual disability were discounted, and three years of hard graft and skilled teaching paid off. Even though she is not autistic, I do sometimes wonder about the link between her language difficulties and her little brother's autism.

So having an autie brother has been much like having any little brother for Ellen. She loves him, fights with him and often finds him the biggest pain in the butt ever.

In the car this morning I was fretting about how I would manage Bob on a visit to a toy shop, as he was invited to a birthday party tomorrow and we needed to get a present. Dreadful visions of apoplectic autie kids being dragged out of said shop by peri-menopausal, wild haired mothers would surely make the evening news. Global warming might escalate and the sky may fall in. I was muttering away madly more to myself than to Ellen and I kinda forgot she was there.

Until a little voice from the back seat said "Mammy, if you believe you're in control, then Bob will believe you're in control and then you WILL do it".
I had to concentrate extra hard not to drive the car across the ditch.
Trying to act as if this was a perfectly normal observation for a small kid to make, I asked her "How do you know this Ellen?".
"Because this is what we do with the horses. It works."
Obviously.
Erm, this kid is 10.

My mini-behaviourist is on to something.
I pretended I was in charge, and Bob bought it.
Maybe horse-riding does cure autism after-all...

Leaving Prozac Nation

2010-10-25T22:08:00.000+01:00

I've never been one for adventure sports and it's fair to say I'm more a lover than fighter.
Pushing my boundaries would involve extreme crochet, or drinking really hot tea, rather than catapulting myself off the side of a mountain with nothing but a paper clip and a hair net to secure my survival.

But I took an uncharacteristic leap of faith about a month ago, when I decided to come off my anti-depressants.
Depression is something I've been slowly coming to terms with, particularly over the last year when, with the support of medication, I've had enough mental strength to recognize it's place in my life.
I don't produce enough serotonin, so I sometimes need to take a pill to replace that, but there's no such thing as a free ride. My depression lifted, but I was getting side-effects like tummy problems and excessive tiredness.

I've been going to the gym, like the doctor said (to release some happy hormones into my blood) and on a personal level my life is good so it seemed like as good a time as any to stop taking my meds.

The big gear shift for me has been to accept depression as part of who I am and to stop struggling with it.
But it took me 25 years of wasting energy wrestling with it, not to mention a few courses of prozac to make it Go Away for a while, for me to gain the experience and maturity to lose my fear of Depression.

That's not to say I'm going to spend my life weeping under the duvet.

It's just that now I recognise the signs, I know when to get professional help and I know there are people who are there for me.

It hasn't been as difficult as I feared.
There has been a shaky few weeks where anxiety has prodded me into believing that the laundry must always absolutely and without exception be up to date, and that hand marks on the walls would lead to an inevitable descent into Armageddon. But the only bad things about that are that I've had to go easy on the caffeine and that I have a really shiny house.

I've also finally learned something that any 3-year-old could tell you...that you need to surround yourself with supportive friends.
I've been doing that in spades lately (you know who you are), and between that and busting my motherly butt at the ~~torture chamber~~ gym, the shadow of Depression has remained in the background.

So I'm still midair, with my eyes tightly shut, hopeful of a soft landing.

40 is The New Black

2010-10-14T20:16:00.001+01:00

I turned 40 last week, and have somberly honoured the occasion with some deep reflection about the direction of my life and my place in the universe.
I have arrived at some life-altering conclusions that are so profound that I have Deepak Chopra and the Dalai Lama quaking in their sandles.
I envisage a book deal, a Hollywood movie and the launch of a range of perfume, such is the significance of my idea. (I may call the perfume hint of menopause or eau de oestrogen ... it's a work in progress).

OK, I've done none of that. But I have been partying like it's 1999.

I have also decided that the term middle-aged is superfluous to needs.

I can make qualified, executive decisions like these now that I am 40, without fear of argument or ridicule.

I have observed that people become a little scared of you when you lurch into your forties.
I think they expect you to be cranky, in an eccentric, mad-old-lady sort of way, and fear that you may set your twenty eight cats on them for suggesting that the 80's retro look is as hideous now as it was first time around, or for questioning your opinion that global warming is a direct result of jedward's over- reliance on hairspray.
Or basically for disagreeing you on any random matter.

It's great.

A few days ago, on a radio report, I heard a 56 year old man being described as middle-aged.
Despite being a little perplexed as to how they know he's not going to check out until he's 112, I was quite pleased at this description.
Working on this perfectly sound logic, and factoring in my decision that I'm not ever going to die anyway, I will never need to apply the term middle-aged to myself.
So I have removed that term from my mental dictionary.

I am having the longest (and best) birthday in my unreliable memory.
My 10 year old daughter got the party started by giving me a fairy snow globe (I really like snow globes...another eccentricity I don't have to feel embarrassed about in my dotage) about a week early because she couldn't contain her excitement any longer.
She's really into the whole 40 thing, but I've noticed that she's started making me cups of tea and patting the back of my hand a lot.

Then my lovely husband took me for a rare weekend away to the Bettystown Court Hotel, where the staff, the accommodation and the food were top class.
I had two full, uninterrupted night's sleep which hasn't happened since our last trip away together three years ago (you can get your fiddles out and weep now).
To feel that relaxed and rested was weird, but the kind of weird I could get used to.

But, seeing as though I am now a cranky old lady, I have two complaints to make.

Firstly, upon arrival there was a bottle of champagne on ice waiting for us.
There's nothing too heinous about that, but as we already had a few glasses of wine we were feeling a bit sleepy so we elected not to drink it immediately.
Think about this for a horrible moment.
Reminders that we are too old to rip open a bottle of booze and neck it down it before we can say "that was grand, now where's the bar?" are not appreciated.
In future, a champagne fairy should be discreetly hiding with the fizz and crystal until I am capable of drinking it.

Fairies feature heavily in this post, and my second complaint involves them too.
Bob's Dad and I went for a long walk along the beach after our breakfast, and found to my incredulous delight that the room had been cleaned in our absence by someone other than me.
Clearly, the cleaning fairies had been, but being the capricious lot they are, they vanished without a trace and foiled my cunning plan to zip them into my suitcase and take them home with me.
I am not pleased.

Last night I was taken out by three of my dearest pals and once again was plied with bubbles and showered with bling, and next weekend a group of autie parents will descend upon the unsuspecting Carlito's in Dunleer to celebrate myself and Taz exceeding the 40mph speed limit.

It's a tough gig, and I'm beginning to wonder if you can get the bends from having fizzy blood.

It'd be a hell of a way to check out, and would make a wonderfully dramatic finale to my Hollywood blockbuster.

Sleep Matters

2010-10-04T20:12:00.001+01:00

There are very few of us on Planet Autism who have escaped "Sleep Issues".

Those two little words could innocently trip off the tongue and be regarded as a minor annoyance to Those Not In The Know.

"Sleep Issues" sounds somehow benign and official , like something that could be efficiently handled with an application form and a rubber stamp.

We make wry jokes about needing intravenous caffeine infusions while our kids continue, unbelievably, to ping off the walls after a full two hours sleep.
But there's nothing funny about having no recollection of driving your daughter to school, or about not sleeping in the same bed as your husband because you're up at 4am lip-synching to the Teletubbies.

Bob's sleeping patterns have "settled down" (meaning we haven't watched Fireman Sam by starlight for a few weeks) since school re-started, but he needs to lie beside me to go asleep. As well as loving my company, he is calmed by deep pressure bear-hugs and brisk back massages.
Needless to say I often fall asleep beside him, devouring my precious time with Bob's Dad. It's not unknown for days to slip by in which we don't have a single conversation.

You can see how the best of relationships could quickly crumble when it's inhabited by two snarling, sleep-deprived strangers.
It gets harder to makes jokes about it the longer it continues.

Now, before you helicopter a crack team of emergency marriage guidance counsellors to Co.Monaghan, Bob's Dad and I have learned to deal with this years ago.
I do the nights (when they happen) and, assuming Himself isn't working (he works three 12 hr shifts per week so there's a fair to middling chance that he'll be home), I get a free pass to stay in bed all day long.
Plus going out for coffee as often as we can while the Little Dears are at school gives us a chance to have grown-up conversations (about important stuff like the economy and jedward). They're simple things, but make a world of difference.

Here's the mad bit.
For the past month or so, as I've said, Bob has been sleeping fine.
On the other hand, I've been hitting the hay at 10pm and going into a coma until the alarm goes off at 7.30am. Then I have to drag myself into the land of the living, where I crawl around doing the bare minimum, counting the hours until I can dive into bed again.
I spend most of my day trying not to inhale half of my townland with one of my giant yawns.

I don't know if it's my increasingly un-tender age, the fact that I rarely drink anymore (and therefore have deeper sleep), or if I've gone into some type of brain spasm over the sudden abundance of sleep.
Maybe I'm part hedgehog and am responding to some primordial urge to hibernate.
It doesn't really matter.
It's really nice to give in to what my body is telling me it needs, and it's extra sweet that it's not craving wine or chocolate.
Just lots (and lots) of sleep.

Many autie parents have found that Melatonin helps their insomniac juniors to sleep, while others use weighted blankets to comfort stressed kids.
But lots of us just muddle through, and catch some blessed zzz's when they are flung our way.

Singing In The Rain

2010-09-20T14:04:00.000+01:00

I should be miserable.

It's raining...
...and it's not the rain I like, which is the take-the-skin-off-your-back rain with hair on it's chest and fire in it's belly. The kind that sounds like there's a small army of steel toed tap-dancers on acid doing an electric boogaloo on your roof.

But no, it's that half-hearted, snivelly sort of drizzle that can't quite decide if it's going to fade dully into fog or just find a quiet corner in a field and die of boredom.

So there's crap rain going on.

Then there's the coffee jar.
I keep an old coffee jar for chucking in those annoying copper coins that rattle around your purse and make it hard to find the real money.
This morning I upended that coffee jar, took the contents into the bank, and changed it to cash to help us buy bread and milk for the rest of the month.
Even the church-mice shed a tear.

So I should be wailing and gnashing my teeth all the way to the loan shark to sell him a kidney.

But I feel unaccountably happy and serene.
I don't normally question feeling happy...I just enjoy it, but this just didn't add up.
I wondered if my anti-depressants had been souped up by a renegade pharmacist, hell-bent on making the world a happier place.
I wondered if I had become so jaded by life that I had succumbed to some giant happy delusion just to help me cope.
I questioned if I had finally overdosed on tea, leading to a delightful loss of grip on reality.

But it's none of that.
As I drove into town this morning I thought of the marriage vows Bob's Dad and I took over 14 years ago, and remembered how we promised to be there for each other for better or for worse.

Well, I guess this is a "worse" bit (autism, miscarriage, depression etc. notwithstanding *cough*...okay, so there may have been some other difficult times as well), and we're still a strong couple.
I can't believe I'm saying this with a straight face, but love really is all that matters.

After all these years of trying hard to be grumpy old cynic, it took a recession and a few of life's hard knocks to bring out the romantic in me.
Who'd have thunk it.

My Family And Other Animals

2010-09-07T17:24:00.001+01:00

You would think that my life is complicated enough.
My three kids attend three different schools.
After school there is horse-riding, boxing, scouts, homework club and guitar lessons to shoe-horn in our week.
I have an autie kid who likes to twang our nerves to breaking point by playing chicken with traffic and dismembering electrical appliances.
He is also an occasional drowner of fish (yes, you read that correctly).

Time management is something other people do.

It is quite nice if we find time to eat and wash occasionally.

But some people thrive on adversity.
Those "some people" being my kids.
I'd rather be burrowed under the duvet watching 30 Rock and drinking tea. Adversity is wildly over-rated.
But my kids are an odd breed who believe that we should fling our doors open to the animal kingdom and invite them ALL to move in with us.

To date we have the following creatures co-habiting with us;
Two dogs, one hamster, one budgie, six hens, one nervous goldfish and a cat.
If not for the forceful, and frequent, use of the word "NO!" they would also have added sea turtles, a corn snake, geckos and many, many felines to our numbers.

Now, I grew up on a farm, where animals are meant to do something.
So far, all our menagerie does is cost money and produce a frightening amount of poo.
The hens lay eggs when they feel like it, but mostly they seem to pass the day trying to commit suicide (hens are particularly stupid) and painting their nails.

If nothing else, though, my kids are learning Darwinism first hand.
A food chain has been clearly established, with the cat remaining indoors to avoid becoming a tasty doggie treat, while she terrorises the fish, the bird and the hamster by fixing them with a steely glare and whispering "soon you will be mine".

Although, in our home Survival of the Fittest has been amended to Survival of the Luckiest, as Bob is prone to opening the bird cage and the budgie has (literally) been rescued from the jaws of death on a few occasions.

I suppose Darwin couldn't get everything right.

Having pets is a great way to teach our kids to be responsible, as they learn to care for other vulnerable creatures.

I wonder if I stuck a few feathers in my hair and started squawking (more than usual) , if they would groom, feed and cosset me?
On the other hand I may be fed to the cat, or flushed down a toilet so maybe I'll stay as I am.

Happy Birthday Planet Autism

2010-08-29T20:47:00.000+01:00

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.

The Scales of Injustice

2010-08-20T10:30:00.000+01:00

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

It's A Cruel, Cruel Summer

2010-08-14T20:27:00.000+01:00

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.

I Am Homer. Hear Me Groan.

2010-08-07T21:40:00.001+01:00

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...
...as 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".
Meanwhile, Bob 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 away....like 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!"

The Pursuit of Happiness

2010-07-31T11:01:00.000+01:00

One of my pre-recession pleasures in life used to be curling up on the sofa with a glossy magazine and a small vat of tea.

I made happy sighing noises at the sheer gorgeousness of the perfect life that was just within my grasp...all I needed was a credit card and a shopping list of this season's must-haves (be it phones, clothes, cars...take your pick). These lovely, shiny pages promised me I could be young/thin/rich/healthy/calm/clever while effortlessly being a gourmet chef/chic home-maker/wise parent.
Easy.

It was also nice to have an accommodating bank manager who flung loans at us like confetti.
("a new computer?? Of COURSE you must have the latest fuel-injected, leather-upholstered, platinum-plated laptop that a family of fourteen could happily live in...or is that a car? I get confused...have some money anyway!!") .

Then the recession happened.
In the space of a few months all our dreams of owning cars with silly names evaporated into the ether along with the collective conscience of the money lenders.
Hell, I even stopped buying my glossies to make sure we could pay the phone bill.
(I still had lots of tea, though...it would be MADNESS to give that up.)

Yesterday I had a precious few hours to myself, and I decided to have a browse in the newsagent.

It's amazing how much perspective a little distance can give you.
I was horrified and a little disgusted at the magazines I used to hold up as my bar for things to aspire to.
Without exception, they all imply that there is something wrong with our lives.
The covers scream that unless we are having raunchy al fresco (*cough*) relations with a flamenco dancer while tapping business deals into our blackberries that we are a poor excuse for a modern woman. They accuse us of (*gasp*) looking less than perfect in public. They insinuate that our child-rearing/ cooking/house-keeping (*OK...anyone who has ever lived with me has permission to laugh freely here*) skills would put Rosemary West to shame.

A perception of happiness is heavily marketed by the glossies.
They peddle aching self-doubt that we try to soothe by galloping out to buy, buy, buy.

Now most of us can't buy these things any more, and I don't know about you, but it doesn't make me feel any different.
I still like to look nice and try hard to care for my family.
But I can nip over to the petrol station for milk at 7.30am without a hair-do and full make-up. If I frighten the guy behind the counter that's his business.
I can still enjoy the gym without believing it's all utterly pointless unless I achieve a bum like Kylie's and a waist like Cheryl's.

Hmmm. I'm getting an idea for a brand new glossy.
It's called "Buying Junk Doesn't Make You Happy. Have a Cup Of Tea Instead".
Catchy, no?

Southern Exposure

2010-07-14T10:01:00.000+01:00

Bob and his big sister were invited to a birthday party yesterday at a really nice play-centre-type-place.
I was a little anxious as I wasn't familiar with the place and didn't have much time to prepare for the party.
And I'm not the one with autism.

So Big Sister catapulted herself into a small tornado of 10 year olds, and wasn't spotted in civilised society for three happy hours.

Meanwhile my understanding friends weren't offended at my poor conversation skills, lack of eye contact and intense focus on the whereabouts of Bob, as I busily frustrated his plans for escape.
(again, I'm not the one with autism, etc, etc)

He navigated three dizzy tiers of the soft play area like a pro, and shot down the slides like a joyful little cannon.
All the while he was watching for an opportunistic open gate, a chink in the netting, or a strategically placed chair against a railing, so he could make a mad dash for freedom.

But he knew this wasn't gonna happen with B#*chMother on patrol.
So what's an autie kid to do???

He climbed to the top tier, accessible only to those under 3 feet tall, with the litheness of a mountain goat.
And stripped off.
He dangled his crown jewels and aired his peachy little bottom to the world at large, safe in the knowledge that B#*chMother could not thwart his happy exposure.

I had to wait, head in hands, until he descended the slide in all his splendour.

So he was re-dressed, re-educated in the niceties of social decorum and finally re-released (that's a word, OK?) into his natural habitat of a soft play area full of juvenile delinquents.

And then he stripped off again.
In the top tier.

This time there was less discussion and more delivery of information, along the vein of "Three strikes and you're out!".

Bob remained suited and booted for the remainder of the party, and sat peacefully while he ate his chips and juice.

There were no further incidents of anti-social behaviour, but he had about him an air of quiet satisfaction that his work here was done.

(p.s thanks to Lavinia for including Bob in the guest list...next time lets go to a nudist beach tho)

Growing Up

2010-07-08T23:25:00.000+01:00

Today I had a quick glance over my shoulder at the strides Bob has taken over the last 12 months.

As a rule I try not to look too far forwards, or too far back, as it only tends to result in fear and sorrow

But this was a happy exception to my rule.

This occasion was prompted by Bob's recent, ridiculously gorgeous, school photo (I won't even pretend to be modest here), which I put beside a family picture taken at his big sister's communion last year.

The chubby faced baby being strong-armed into sitting still for half a second 12 short months ago, is now a proper slugs and snails and puppy dogs' tails little boy.

His face is narrower, he is a good deal taller and no-one had to manacle him in a headlock to snap his portrait.

Now that Bob has acquired the sage wisdom of a 6 year old, he can boast several new strings to his uniquely autie bow;

He is toilet trained.

Those four small words belie the two years of sheer torture it took us to get there.

And now that we're finally here, I really, really don't want to look back.

So lets move on.

He is having make-believe conversations on the phone.

It's mostly 'Bob The Builder' related echolalia, but he's very happy to include us in his games.

This is huge for an autie kid.

He learned to google his favourite cartoons on YouTube, often in French and Spanish (which we find wryly comical, given that he still hasn't mastered English), and can navigate his way around a laptop with professional ease.

Just like his mother...

(who thinks there's nothing wrong with parchment and carrier pigeons).

He is copying dances from cBeebies , and is learning to say "hello" and shake peoples' hands when he meets them.

He is definite in his likes and dislikes, and has no trouble saying a loud and clear "NO" when the item on offer fails to meet his precise specifications, kinda like a mini Man From Delmonte.

He can usually go to sleep without an adult lying beside him.

He understands that sometimes he has to complete something he perceives as unpleasant (like homework, or hand-washing) to earn a reward.

When he's playing with his toy Iggle Piggle and Upsey Daisy (from 'In The Night Garden' for those of you under 30 or over 50), he makes them give each other "star hugs".

He can read simple sentences and add numbers up to five.

He wasn't doing any of these things one year ago.

Living in anything but the present can be a dangerous occupation for an autie parent but, now and again, it is surprisingly sweet to indulge in a little retrospection.

I'm not trying to give the impression that Bob is anything other than a fabulously nutty, clever little dynamo who considers clothes little more than a nuisance, and sitting still as an utter waste of time.

He was, is and always will be a sailor on the good ship Autism, but how he is learning to adapt to survive in a world he is overwhelmed by, is as close we can get to the miraculous.

Food...The Final Frontier

2010-07-02T23:02:00.000+01:00

Anyone who has a child on the autistic spectrum will know what it's like to have issues (or as I prefer to call them screaming bouts of frothing hysteria) with food.
Actually, scratch that...anyone with children will know what it's like.

I have a 13 year old neuro-typical son (if it's not against the law to apply that term to a teenager) who has retreated, permanently it would seem, to his bedroom/cave to communicate solely with other pubescent lifeforms dwelling in the netherworld of the Xbox.
He emerges occasionally to grunt in the direction of food before shambling back into his darkened lair.
Many years ahead I expect to see a 6ft bearded stranger, wearing a suit and polished shoes, to materialize from that room, blinking in the sunlight, with a career, a briefcase and quite possibly a wife.
He will speak in full sentences and occasionally trim his nails.
Until that day, I can with confidence reveal that the smell of teen spirit is a heady concoction of armpits, hair gel and mouldy socks.
In the meantime I appear to be fueling this painfully slow metamorphosis with small mountains of tasteless carbs and monosodium glutamate.

I have a 10 year old neuro-typical daughter who I like to describe as a Hannah Montana/Vivienne Westwood wardrobe explosion. She has a cool eccentricity I hope she always manages to hold onto.
She is also painfully skinny.
The belts we buy to hold up her jeans have to be punctured 1/2 the way up to secure them around her teeny tiny tummy.
She eats ridiculously healthy food (fruit, veg, meat) not because she thinks she should, but because she really likes it...but she doesn't do carbs.
Bread, pasta and rice are artfully moved around her plate and she has perfected the art of whisking her plate to the sink and throwing a "thanks I'm finished" over her shoulder as she vanishes out the door.
That girl can move fast.

My 6 year old autie son will eat anything, just so long as it's mashed potatoes with beans.
Sometimes he'll push the boat out and risk some weetabix, or a few chips but that's the breadth of his culinary adventures.
He is a dedicated apostle of all things puréed, and in his opinion, fruit and veg are just silly.

So, every so often I indulge in a nice little worry about their nutrition and health and try to figure out where their food issues (*cough* neuroses) arise from.

I don't have to go far to find the answer.

I have a bad relationship with food, and really only cook when starvation is imminent.
It is definitely more Gordon Ramsay than Jamie Oliver in my kitchen.
If I could cook with the same passion as I swear at the shrink wrapping on frozen pizza, then gastronomic bliss would reign in our house.

So I asked myself, what exactly do I not like about food.
I like how it looks and smells, and I love to eat it....but I realised that I don't like to touch it.
Slicing chicken fillets make my toes curl, rubbing butter into flour fills me with sticky horror, and mixing anything doughy, meaty or gelatinous with my bare hands makes my heart race (and not in a good way).

(those pesky scientists who hypothesise that there is a genetic element to autism couldn't possibly be right, could they???)

Myself, Himself, Bob's teachers, sna's, occupational therapist, speech therapist, stylist (OK, he doesn't have a stylist...I was just checking that you were paying attention), friends, Romans and countrymen are all working towards Bob overcoming his sensory issues.
He has come a long way in three years, and can now tolerate walking on grass and sand, and not only will he touch play dough but he can finger paint and play with shaving foam (sometimes on the bathroom wall with his Daddy's best Nivea stuff, but that's another story).

So it's a bit rich for me to avoid cooking because food makes me squirm, when a young autistic child can successfully do battle, David and Goliath style, with a whole host of sensory issues.

So this evening I took a deep breath and baked a loaf of bread.
I haven't eaten it yet, but I don't really care if it could be used as a breeze block to build a pier in the North Atlantic.
The fact is I got dough under my fingernails and toughed out the screaming urge to scrub them with surgical spirits.

All thanks to my autie kid's ~~stubbornness~~ tenacity igniting a spark of domestic inspiration in me, myself and my family might be eating better in the future.
Unless the demand for breeze blocks increases.

All The Single Ladies

2010-06-27T11:26:00.003+01:00

My husband James and our friend Paul are on the final stretch of their epic fundraiser cycle for Bob's autism unit. This afternoon they will coast into the most northerly point in Ireland at Malin Head, after leaving the most southerly point in Mizen Head six days ago.
Hope their brakes work.
The imprint of a saddle will be permanently tattooed on their backsides, for anyone brave enough to take a peek.

(the boys with their two favourite cheerleaders Katy and Breda)

While the boys were toiling in the mountains, I was doing a bit of cliff-hanging myself, as I got a (blessedly) brief taste of what single parenthood is like.

I'd love to do a schmaltzy post about missing James, but I'm a grounded kinda gal. It goes without saying that I miss him, but I also know that it's only for a week.
I've spent longer in hospital.

The single biggest change for me was making decisions without consulting anyone.
I didn't do anything major like buy a yacht or sell one of the children (or at least that's what I'm telling James), but it was the hundreds of mundane things that couldn't be left to anyone else.

There was no-one else to bounce ideas off ..."should I argue with my teenage son or just let it go?", "will I wash the floors now or wait til the kids go to bed?", "fish or chicken for dinner?".
Riveting, eh?
But 24/7, that kind of mental responsibility gets very weighty.

I knew I could handle the kids/cooking/cleaning etc. etc., but the constant rehearsals in my head of what needed to be done next was hard to switch off when bedtime came.

On the flip side, I'm secretly quite pleased with how super-organised I can be, if not a tad concerned about the obsessive relish with which I stream-lined the notice board and rotated the towels in the hot-press (aka the airing cupboard, for anyone who can't speak Irish).
I practically used a ruler.

To hell with religion, alphabetised bills is where inner peace is at.

So I would like to make a bow to single parents, who have to organise having a shower with military precision, and can leave nothing to chance... because if things fall apart you're the only one trying to fix your life with glue and sticky tape.
Respect.

A RoundAbout Approach

2010-06-22T23:23:00.000+01:00

I got to thinking the other day about a particular buzzword that was bandied about with such frequency during my student nurse days, that it began to lose it's meaning.
(Try repeating the words redlorryyellowlorry ten times to see what I mean.)
Buzzwords were very big in the early nineties, and may have been a hangover from the Decade That Taste Forgot (the hallucinogenic eighties)...when people regularly touched base and said things like don't even go there! while wearing stonewashed jeans and giant hair.
And the glasses that I wore that could have been doubled up as satellite dishes are best forgotten. Perhaps as we speak they are being used to guide top secret military aircraft through war-zones.

Anyway, this particular buzzword was biopsychosocial (phew! I can still spell it) which is a model of nursing practice based on viewing the patient as a whole person instead of a collection of symptoms.
Nice idea, but not terribly practical when you have a 30 bedded ward being goose-stepped by prima donna consultants.
So the word became a rather cynical tool to curry extra points in essays, by pasting it in as frequently as possible, instead of a usable method of nursing.

But I discovered that philosophy doesn't make the beds.

That said, I liked the whole idea behind the biopsychosocial approach.
It made sense...if you have a pain in your big toe, it makes you grumpy and then you have no friends.
So a problem in one aspect of your being can have a ripple effect into other parts of your life and, conversely, improving one thing can have benefits elsewhere.

Shamefully, the whole lovely notion got diluted in the rivers of student life, shift work and the seriously nasty Bulgarian wine (£2 per bottle) we used to forget our troubles.

So this little kernel of wisdom survived the almost 20 (yikes!) intervening years only to pop to the surface the other day.

A few weeks ago I was on a bit of a downer, and I lay plastered across the couch...my big wobbly depression resting dolefully on my increasingly bigger, wobblier butt.
I didn't mind the curves, but I hated that I felt as physically flaccid as mentally.
So I've decided to (finally) make practical use of this model and I've joined the gym to improve my mental health (of course I didn't tell the instructor that....I don't want them to think that I'm mad). I just told them that I wanted to look like Elle McPherson as soon as possible.

I was pretty nervous when I did what is laughingly referred to as a Fitness Test...but I was pleasantly relieved to notice that the gym was not populated by size 8, lycra clad gym bunnies. The clientèle seemed surprisingly human, and wore baggy tee shirts and shiny, red faces with badly behaved hairstyles.
I felt right at home.

So that's the bio and the psycho addressed. The social?...well, two out of three ain't bad.
XXX

Anger Is An Energy

2010-06-12T13:16:00.004+01:00

My thought processes are so slow that I reckon I'll have everything figured out just about 30 seconds before I die.
The wheels and cogs in my lumbering old turtle brain have presented me with a new idea.
It took months (gawd, maybe years) to get to this point, so be patient while I explain myself.

As I have talked about a few times in this blog, I am prone to bouts of depression, and even though I'm on medication I still have the occasional dip.
It's no party, but it doesn't frighten me anymore because I know what it is and I trust that it will pass.

So about a week ago my mental health was ably assisted into the doldrums courtesy of the following precipitating factors;

(1) I forgot to take my prozac one day (oops...but hey, I am mad)
(2) Bob was discovered over a mile away from home on a determined trajectory towards his uncle's house (which is 10 miles away!!!)...he was within spitting distance from the Dublin-Derry road
(3) Mother Nature doesn't seem to check her in-box...if she is reading I have finished having children so PMS is superfluous to my needs thank you very much.
I don't think the cranky old biddy cares though.

So in the post I received a lovely bouquet of lethargy, tearfulness and self-loathing from the mean spirited Mother Nature.
I was a laugh a minute.

I recalled often reading that depression is anger "turned inwards" and I scoffed at the notion of having the energy to feel anything more taxing than faint irritability. I could barely get dressed, never mind hurl the denby against the wall.

But as my medication kicked in, my hormones levelled out and Bob was garrisoned even more securely, I began to feel a tickle of rage.

Normally I distract myself from this anger by manically cleaning, or turning the stereo up to 11.
But this time I allowed myself to feel the rage.

You know when you drive over a bump in the road too fast and your stomach turns gymnastic flip-flops, and you're unsure if you're excited or terrified? Well, that's pretty much what my anger feels like.

I am outraged that despite turning our home into Alcatraz, punctuating our days with endless locking and unlocking of doors and gates, and constant checks on Bob's whereabouts that he still managed to outfox us. I want to be angry with Bob and to let fly at him over the terror he put us through, but he's autistic and that's what autie kids do. So I can't be mad with him.

Spouses tend to be the first in the line of fire, so I want to scream at my husband that it's all his fault.
But he's the one who fenced in a play-yard for Bob and screwed bolts on the gates, and nailed chicken wire to the garden fence and gate to stop Bob clambering through them. Bob's autism and bolts for freedom are not his fault, so it would be grossly unfair to be angry with James, who is an ace husband and dad.

So that just leaves me to be mad with.
And suddenly the anger-depression relationship actually means something to me.

I'm not sure yet how to channel this anger, but I recognise that it could actually be used positively, instead of allowed to burrow deep within me and eat me from the inside out.
I'll have to get my thinking cap on about that one.

Less is More

2010-06-06T12:19:00.002+01:00

"We have tested and tasted too much, lover
Through a chink too wide there comes in no wonder"
(Patrick Kavanagh, Advent)

...or if a fellow Monaghan citizen may be so bold as to paraphrase...you can get too much of a good thing.

So over-indulgence of wonderful things can become ordinary and they lose their magic.
Lemon cupcakes and Shiraz spring to mind.

Those lines made me think of Christmas morning when we over-indulge our kids with plastic and electronics, and they inevitably ignore them and play with the boxes.

As many of you know, I'm not a sackcloth and ashes kinda gal, but I can see the wisdom in fasting and spiritual retreats.
OK, maybe I'd have trouble with the hunger and the God stuff, but I can imagine it would make all the good things we take for granted seem fresh and new again.

It made me think about the distress our autie kids feel when they are overstimulated by a constant barrage of TV, laptops, Nintendos, iPhones etc. etc.....in addition to the sensory insults they feel at the light, sounds and touches we don't even notice.

I've started to make a conscious effort to tone down on the in-your -face sensory onslaught that has become a constant white noise in the background (to us), but may make a significant change to Bob's peace of mind.
I don't intend stripping our home back to monk-cell austerity, but switching off the TV now and again, putting the laptop on the shelf for a while and switching off lights when no-one is in the room could make a subtle, but effective, impact.

That said, my 10 year old daughter's birthday party yesterday was a prime example of how NOT to embark on a sensory diet.
We had a bouncy obstacle course the size of a small planet, many children who consumed their own body weight in sugar and e-numbers, and surprisingly seasonal June weather.
Caffeinated, sugar-buzzed kids were returned to their parents alive and with a full complement of limbs, but the party continued into the witching hours with three of my dearest friends (although Dee had to leave a little earlier with her crew...thank God one of us is a good parent). My Inner Silliness was in good company last night, and it was good to give it an airing.
(Wine may have been consumed...sshhhhh)

But, back to the austerity thing.
My feeling is that simplicity is where peace lies.
Now I'm off to drink tea and build a kitten jigsaw with my daughter.

Help

2010-05-31T22:46:00.000+01:00

Toady I made a visit to the bank in an attempt to tame our runaway finances ( it's been a lesson to me to face up to my problems instead of making like an ostrich in the Gobi), and I experienced the very rare feeling of being Grown Up...
....which is a handy thing to feel when you're 39, with kids who have bigger feet than you have.
After many months of fretting over my husband's shrinking salary being unable to stretch across the expanding waistline of our debts, we cast a cold objective eye over our finances and concluded that we need help.

It's wonderfully liberating to express this, without any shadow of shame or blame.

When you can look someone in the eye (be it a bank manager or a child psychologist) and confidently say that despite your best efforts you just can't manage anymore, it shows an ability to trust in other people.
It's not the same thing as abdicating responsibility. We still have to fix it, but now we have been given the tools (and the expert advice) we need to deal with this problem.
Because we asked.

The last time I felt like this was when I took my son to my Public Health Nurse at the age of 20 months, and said I need help. He's not talking, he won't look at me and even though everybody tells me I'm over-reacting, I know I'm out of my depth here.

I used to think maturity was something peculiar to cheese and fine wine, and was occasionally cited as a consolation prize for wrinkles and grey hair.

But learning that we don't have control over everything (and, crucially, not having a acute onset of the screaming heebeejeebies over the fact) is a skill that, in my case, has come with age.

I have a half-baked theory that OCD stems from a desire to impose control on a life we realistically have no hope of ever doing....we can alphabetise our CD collections and wash our hands until they're raw, but this won't prevent a lightening strike or a recession...or even a diagnosis of autism for our kids.

Sometimes no matter how hard you work, how diligently you monitor your purse-strings, or how fiercely you love your children, life can still throw you a curve ball.

The real skill is knowing that asking for help is not a sign of failure, but of finally becoming a Grown Up.

Super-Model vs Super-Tanker? No...Just Super

2010-05-23T23:07:00.001+01:00

Oh dear.

This last year I've been feeling not so much super-model as super-tanker.
I'm not overweight, but the waistband of my jeans is complaining, and there are interesting ripples and creases (oh, OK then....it's cellulite) where once all was smoothness and light.
It would be easy to ignore my own well-being and remain immersed in a world defined by autism.

This is a subject I return to every so often.

I fear losing my integral Jean-ness (this is a scientific quantity, measured in cups of tea in the morning, and units of Shiraz in the evening) beneath weighty layers of autism.

Even though we need to dive headlong into the Autism Ocean (which is east of the Sea of Bad Metaphors) and swim with the fishes, that we don't (and probably shouldn't) stay there forever.

There are two very real dangers.

One is that we will drown, forget who we are and become part of the ocean.

The second is that the Bad Metaphor Gestapo will come for me in the middle of the night and make me read poetry until I cry.

But I won't wait up for them...
...I'm not trying to win the Pulitzer prize for literature, I'm just trying to get a point across.

For me, it's taken almost three years to be OK with autism.
Now it's just there, in the same way that my oldest son hates French, and in the same way that my daughter wears pretty funky glasses.

I have great kids, a gorgeous husband and a roof over our heads.

Now that I've had my teeth fixed and my hair professionally coloured, it's time to get out of the sea, hit the gym and wiggle my wobbly butt into submission.

This October I will be a fit, fab and forty-year-old wife and mother, who just happens to have a cool kid with autism. As well as two other pretty cool kids, who don't have autism.

Autism rocks, but so does it's funky momma.

The Seven Signs of Grumpiness

2010-05-21T14:15:00.000+01:00

I was shocked and appalled to be tagged by the impudent Jen to list seven things that make me grumpy.
Seven!
From a veritable little ray of sunshine like me???
Impossible.
Wait a minute...
...maybe being made grumpy by being asked to explain my grumpiness has just become No.1 on my list.
Suddenly I'm in a better mood.

No.2

Absolutely loving physics but not being able to get my mashed potato brain around it.
I had a great physics teacher when I was at school, who managed, incredibly, to make it an exciting subject.
No food-stained cardigans and nasal hair for her...she was sassy, brainy and sexy, like the honey you add to porridge to jazz it up a bit.
I wanted to be her when I grew up.
Sadly, my enthusiasm for quantum theories was hampered by an inability to add 2 + 2.
Hate that.

No.3

Very Clever Arty People who think you're a worm on the sole of their shoe unless you are in a perpetual state of suicidal misery about the wretched nature of humanity.
They equate humour with shallowness, and regard happy people as deluded fools.
I love to read, and over the years have waded my way through sullen tomes just because I was told (by the Arty Clever People) that I "ought to".
But not anymore!
I have embraced my inner silliness and use it fiercely to whack about the head of Moroseness.
We all know life is tough, so laughter is a very serious business, not a light-headed whimsy.

No.4

Still not being able to succinctly explain autism to non-autie civilians.
I came to the conclusion many moons ago that the Triad of Impairments is a big pile of poo, and all it does is describe some of the characteristics of autism without delving into it's nature.
These days I describe autism as a sensory processing disorder, but I would love to be able to explain it in one sentence instead of making the person sorry they ever asked.

No.5
Mornings.
They're just stupid.

No.6
My love-hate relationship with fashion magazines.
I love fashion but hate that I am sucked into longing to be a clear-skinned, 6ft, size 8 super-model who falls out of bed in full make-up with artfully tousled hair.
My head (mashed potatoes, remember?) knows that it's false and impossible...especially for a fun-sized Irish gal whose skin varies in shade from anaemic to deathly blue, and who's rump would rouse any Mullingar heifer to insane jealousy.
Heifers are just so damn lucky they don't have to worry about shopping for jeans.
So, I love the clothes, but hate the falseness...and at the age of 39 I am sorry to admit that I'm still waiting to grow six inches.

It could happen.

No.7

Thinking of a Great Riposte about three weeks too late.
When somebody says something cutting/angry/nasty my brain hits the disengage button, and I have a spinal reflex which persistently returns to my default position of Human Goldfish.
As in, my mouth opens and closes, but no words come out.
In equal measure, grumpiness is elicited by people who respond with "Well, I would have said a,b or c..." when I tell them my tale of woe.

I quite enjoy being grumpy.
There's nothing quite as satisfying as a good old grumble about the weather, what's on TV or the price of eggs.
Basically things we can't change so are in no immediate danger of having to actually do anything about them.

It's a bit like armchair politics.

Right....grumpy interlude over...where's Little Miss Sunshine at??

"Can We Do It? Yes We Can!"

2010-05-15T10:09:00.000+01:00

I just posted a rather exuberant statement over on my Bear In The Woods page.

Bob's Dad and I are more than a little excited about the fact that for the past three nights, Bob has been refusing to wear his nappy...and has remained as dry as pepper.

What is both thrilling and perplexing is that we have been focusing on day-time toilet training for the last year and a bit, and we are about 70% of the way there. But night-time training had been relegated to such a distant back seat that a map, a compass and military binoculars would be required to catch a glimpse of it. Night-time continence has assumed the mystique of the Yeti and the Loch Ness monster.
Even though we had heard the occasional urban legend that it had been achieved, we remained sceptical, needing more evidence than footprints in the snow and grainy photographs to prove it's existence.
We were non-believers.

So, like learning his alphabet, he did it entirely on his own...

...which, true to my nature, begged a question (or two).

Will our kids eventually achieve milestones on their own, at their own comfortable pace, without us hectoring them with charts, rewards and reinforcements?
Are we just creating pointless anxiety by forcing our kids to strive for achievements that they just aren't ready for?

My gut says an annoying "yes" and "no".

It seems to me that some of the time, some of our kids will Just Do It and cock a two-fingered salute at all our efforts to impose education. See alphabet and night-dryness above.

But it also seems to me that other skills (like independent dressing and feeding) would never be realised for Bob without the input of occupational therapy and shed-loads of patience...and I don't want to be spoon-feeding a 25 year old sporter of shell-suits (as I won't have the strength to hoick anything else onto him in 20 years time).
Sole responsibility for the prevention of future fashion atrocities lies with dogged education.

This is making my head hurt, and it's too early in the morning.
I'm off for a giant mug of tea and a little lie-down.
But I would love your opinion on it to help me untangle this particular knot.

Bob will never cease to surprise us, and we fully (and shamefully) expected the need for canoes and life-jackets when nappies were finally disposed of.
What a fool I am for under-estimating him.

Smelling The Roses

2010-05-07T18:17:00.003+01:00

I was feeling a little hard-done by earlier in the week, as the laundry and the dishes were in danger of becoming a geographical feature in Co Monaghan.
I hauled the same squelchy clothes out of the washing machine, packed the same greasy plates (plus a few thousand tea mugs, god bless 'em) into the dishwasher and hoovered the same manic debris from the same sticky floors.
My feet felt like lead and I felt I was going insane with the incessant sameness of it all.

But I had a little flash of insight that helped me see the woods and the trees.

I spend a lot of time teaching my kids the difference between want and need.
And I thought that maybe I should start to live by my own lectures.

I was brought up in poverty...and before you worry that this is going to become a hand-wringing boo-hoo fest, you can put away your hankies because I don't do self pity.
We were never hungry, but we lived in a rodent-infested, damp three-roomed house (a kitchen and two bedrooms), with a single cold tap, no central heating and no bathroom or toilet.
That was home to my two parents, six kids and a sick grand-uncle.
Our clothes were hand-me-downs, and holidays were something other people did.
It wasn't quite Angela's Ashes, but it was an uncomfortably close first cousin.
As a child I didn't think anything about it all, but now I am filled with relief that I don't have to raise my kids in the same conditions.

Without being sanctimonious, I feel tremendous gratitude for the kitchen appliances that I am graceless enough to moan about, for the heat I can comfort my family with at the flick of a switch, and for the warm, dry beds I settle my children into at night.
I'm also a little ashamed of myself for complaining about the cost of fuel (for our TWO cars), the price of insurance (for our FOUR bedroomed house) and the unending amount of laundering of our (FOUR wardrobes full of) clothes.

By extension, I am also almost giddy with relief that Bob has access to an excellent Outreach Unit, is transported there and back by a taxi I don't have to pay for, and that he has some semblance of services for his autism.

His services could (and should) be better, but if Bob was born in 1970 instead of me, he would have been institutionalised in a hospital for the then-called "mentally handicapped".
Goodbye Bob, hello medicated, incontinent, spoon-fed, speechless cast-off.

This is not to say that that just because things are good, that they shouldn't be better...it would be wrong to stop fighting for improved services for our special needs kids just because our current society is good enough not to lock them up and throw away the key (season with sarcasm to taste).
Whoopee for current society.
But sometimes I want so much more for him than he actually needs.
We are lucky enough to live on this small, imperfect rock clinging to the west of Europe, where food, heat, shelter, education, healthcare and justice are expected (if not always delivered) and where we at least have the foundations of improvement dug.

What I want for him is to be normal (may I be burned at the stake for heresy) ...but I suspect that in the wee, small hours of the night that this is what most autie parents wish for.

But what I need for him is really not much more than he already has.
He has a family who love him, a school who are ambitious for him and he is as healthy as a wild duck.
He has services that are not frequent enough, but that give me the tools I need to educate myself and become his 24/7 therapist (as well as his Doting Mammy, of course).
He has his angel Lorraine for 3 hours a week for home support, to allow me time to search among the drumlins of Monaghan for my mental health (I know it's there somewhere).

If I was in the God Squad, I'd say a prayer of thanks to the patron saint of Tumble Driers, Speech Therapists and Ford Mondeos.
But as I'm likely to spend eternity being gently sautéed in the pits of hell (where they have better parties anyway) I'll just thank my lucky stars that Bob was born where he was, when he was.
And to continue fighting to Good Fight, while smelling the roses in the garden.

The Week That Was

2010-04-30T18:58:00.000+01:00

We are having a lovely Friday evening on Planet Outreach. And that's not in spite of the regular lunacy that envelops us, but because of it.

Picture the scene.
The Teenager is to my left, belting out Led Zeppelin on his electric guitar.
To my right, Ellen is ~~murdering~~ practising the tin whistle.
Bob is running around asking for "marshmallows" with perfect pronunciation, and all the while The Teenager is sustaining an encyclopaedic monologue on XBox games.
The table is littered with music sheets, toys and crusts leftover from breakfast...basically nothing that would constitute a good dinner, but could easily be mistaken for the contents of a bin.
Pizza and chips are starting to sound good.
Bob has Transporters twittering on the DVD, In The Night Garden warbling from the sky-box and the Real Bob lamenting the lack of reliable staff from the DS.
In between mangling the tin whistle, Ellen takes enough breath to agonise over what to get for her birthday (FYI a Hello Kitty phone, or another Sylvanian house...the girl doesn't lack ambition).

Ya know what?... It's great.
This is exactly where I want to be and what I want to be doing.

We have had a hard, but productive week in which a token exchange system was introduced to help us get through Bob's difficulties with his homework. Up until recently we had no homework issues at all (I picture Jazzy chortling away to herself in a corner somewhere) but a few weeks ago he decided that homework just isn't fun and I won't be doing that any more, thank you.

I talked to Bob's teacher about it and she sent home a token chart, where he chooses a reward he wants to work towards (usually the DS, or a biscuit) and is awarded one token for each piece of homework done...when he has completed the three pieces of work (and has 3 tokens stuck to his chart) he gets his reward. It works like a dream with Bob's Dad and homework is done at warp speed.
But...when I'm on homework duty he turns into a fun-sized Elton John and it's tantrums and tiaras on the dining room floor.
I'm working on it, and it's hard at the moment but I know it will improve with patience and persistence.
Either that or I need to start testosterone injections and grow a beard.

My optimism is buoyed up by the great ABA course I am now halfway through at the ABACAS school in Drogheda, so I am qualified to bombard you with terms like "token economy" and "chaining" with wild abandon (I find if you say anything with enough authority in your voice, people will generally believe you Know Stuff...I once scored a pachillion points at scrabble using the word "vax", which I insisted was a verb...it still pains my brother and gives me wicked pleasure in equal measures ).
Seriously though, the course is giving me a deeper understanding of the methods being used at school, and is another step at helping Bob along his road. I would encourage any of you autie parents to do one when you feel the time is right.

It has been a week of volcanoes, outlandish political pensions and the sudden death of Gerry Ryan. An eye test was attended, troubles brewed in Northern Ireland and the Greek economy made ours look positively thriving.
And life goes on.
We just gotta live every precious minute of it, for the short, sweet time we walk this Earth.

I was also tagged by Jazzy with a Gratitude Award, so here is a list of things I feel most grateful for;

1. My gorgeous husband and kids. 'Nuff said.
2. My friend Lavinia telling me to get Bob assessed, when everyone else told me I was over-reacting.
3. The swallows finally making it back to Ireland. It's Spring!
4. The first sip of tea in the morning.
5. Sleep (oblivion and beauty therapy all in one...genius)
6. My friend Lorraine who came to my rescue in Bob's early autism days as his SNA in Montessori, and continues to earn her wings and halo as my home support...oh, and she's a good drinking buddy too.
7.That my 3 kids have never stopped hugging me, even though one of them is now (yikes!) taller than me. Their hugs are only lovely.

OK, that'll do you....hmmm...who shall I pass this onto? I suspect it's been doing the rounds, so I propose that if you're reading this, consider yourself tagged.

I have suddenly found myself capable of reading books without the word AUTISM in the title...after 3 years in a literary wilderness, this is a big deal for a former voracious reader. I have many books to catch up on, and I am starting with one of my all time favourites, Roddy Doyle.
In my imminent future I see much neglected housework, weeping eyestrain and many cups of tea.
Happy days.

Never, Ever Give Up

2010-04-26T22:28:00.001+01:00

I'm upstairs in my study listening to Bob humming in bed, while policing his occasional freedom dashes to the landing.
He's not gonna win as I have my Reeboks on, but I have to give the kid top marks for tenacity...he doesn't stop trying.

I'd love an ounce of his ability to keep trying.
He uses this skill to pick locks, scale walls and move educational mountains.

I mean this literally...
(...metaphors are for the non-autie community).

I am optimistic that one day this skill will enable him to better verbalize his needs, to be more independent and to become all that he is capable of becoming.

Sometimes I stop trying because of a boring list of "reasons" too tiresome to type...
...yet my *cough* disabled child never says "Never".
It's just not in his vocabulary.

That's a pretty cool language I'd like to learn.

SuperMom Sucks

2010-04-21T22:31:00.003+01:00

I'm fed up of being SuperMom.

This morning started with a fully leaded, fuel injected, turbo powered tantrum (for there is no other word to describe it) from my 13 year old neurotypical son.

The day wore on with five loads of washing, the frenzied hoovering of scattered pink fish-tank stones (don't ask) before they became an entrée, in addition to the usual general feeding, watering and bum-wiping that punctuates our days.

Then I looked in the mirror and saw a living paradox gaping back at me...grey hair and acne.
Mother Nature is a bitch from hell.

Today I really thought I was losing it.
The tension within me was coiled tight enough to spark a small (but perfectly formed) nuclear chain reaction, resulting in a black, charred hole where my home, and my soul, used to be.

It didn't happen like that though.

And I thought, "Why the hell not???"
What is the magic ingredient that stops us packing a small bag (mostly full of Dermalogica products), nicking the Husband's credit card and hightailing it to Hawaii...
.....For Ever??

I'm not into sentimentality, so if ever a movie is made about my life, Robin Williams won't be in it.
But...
...it has to be plain old love, doesn't it?

Sure, lots of things may come into play like a sense of duty, guilt (especially if you're oirish), and plain old not-knowing-what-else-to-do...but none of those things would fuel us with the stamina we need to stay on course with our autie kids.

Those Greek legends got it all wrong....while the Gods were wrecking their heads trying to fox heroes with the acquisition of golden fleeces and remonstration with disagreeable Titans, all they had to do was chuck Jason an autie kid and say "live with that!".

It's enough to test the mettle of any demigod.

Yet us mere mortals seem to be doing an OK job of it, even when we have days that make 'One Flew Over The Cuckoo's Nest' seem a desirable holiday destination.

How come I could hug and kiss my three kids tonight, when earlier today I would have braved any amount of volcanic ash to be catapulted anywhere else...as long as it was far, far away?

Answers on a postcard please.

15 Things About Me

2010-04-17T11:26:00.001+01:00

I was tagged by Lora to post on 15 things about me, so I polished my ego and produced something light for you to enjoy with your morning coffee.
Point and laugh as you will.

1. THINGS THAT SCARE ME

- the dark
- deep water
- not being able to find one of my kids

2. PEOPLE WHO MAKE ME LAUGH

- my sister Mary (strange sense of humour!!! ...which I completely get, of course )
- my brother John (infantile sense of humour...absolutely love that a 30 year old man telling lollipop stick jokes can make me lose my breath laughing)
- Eddie Izzard (a God among men)

3. THINGS I HATE THE MOST

- hangovers
- Jeremy Kyle
- running out of tea

4. THINGS I DON'T UNDERSTAND

- t'internet (best approached in full body armour wielding a pointy stick)
- the current retro 80's vibes...the 80's were horrible enough first time around...leave it where it is!!!!
- The Theory of Relativity

5. THINGS I AM DOING RIGHT NOW

- erm, drinking a giant mug of tea while typing
- listening to Bob watching Transporters
- loving the daffodils in the morning sunshine

6. THINGS I WANT TO DO BEFORE I DIE
- I've decided I'm not going to die, so this bit doesn't apply

7. THINGS I CAN DO

- drink a very impressive amount of tea
- remain patient with my kids if they wake me at 4am
- read upside down writing

8. WAYS TO DESCRIBE MY PERSONALITY

- contradictory
- lazy
- a bit strange

9. THINGS I CAN'T DO

- drink whiskey (bleurch)
- enjoy Country and Western
- concentrate on the innards of politics

10. THINGS I THINK YOU SHOULD LISTEN TO

- birds singing while you're hanging out the washing....all is well with the world when this happens
- proper traditional Irish music (and not the cross-bred C and W horror show that is often mistaken for it)
- me

11. THINGS YOU SHOULD NEVER LISTEN TO

- a man promising you sweeties if you'll get in his car (unless they're minstrels...yummy)...this is also usually OK if the man in question is your husband
- the lady at the make-up counter insisting that orange foundations warms your complexion...this will only serve to make you look like you're in the terminal stages of liver failure
- me

12. THINGS I'D LIKE TO LEARN

- to speak fluent Irish
- how to dance with a little more grace than a drunk, electrified rhino
- how to plug all the holes in my leaky memory, so that I can remember what day it is

13. FAVOURITE FOODS

- freshly baked pizza
- banana split
- my sister Kay's sponge cake (mmmmmm)

14. BEVERAGES I DRINK REGULARLY

- this will shock you....tea!!!
- the cappuccinos you get in Butlers
- red wine

15. SHOWS I WATCHED AS A KID

- Playschool
- Dr Who
- The Magic Roundabout

16. PEOPLE I AM TAGGING TO DO THIS....
-Taz
- Blue Sky
- Dr Destructo's Ma

The Correctness of Political Correctness

2010-04-08T22:02:00.000+01:00

I stumbled across a blog today that really got me thinking about disability and political correctness.
The writer talks about an incident at a Frankie Boyle gig, in which he told a lady who was offended by his "jokes" aimed at people with Downs Syndrome to "f**k off" (the lady's daughter has DS).
Frankie Boyle's hostility towards the lady is shocking and he clearly felt no remorse at mocking a group of people who have no hope of defending themselves.
But what really bothered me is that I can only assume that most people in the audience felt that people with Downs are fair game for ridicule, since it would appear that no-one supported the lady.

I went for a walk around the hills of Monaghan this evening when my Angel Lorraine arrived, and I was busy whacking the grass away from the verge when it struck me that I felt angry (regular readers will know that it takes a while for my synapses to snap).

I thought "why are people with disabilities reviled???"

The basic unfairness of it is unspeakable.
The fact that there is a need for support groups and advocacy agents is proof enough of society's intolerance of those less-than-perfect.

And I was REALLY pissed that I loved Frankie Boyle on Mock the Week, while he was making a living out of making cheap swipes at a vulnerable group.
The school yard bully makes good...but it's chilling to know that he has an audience willing to pay good money to laugh at his jokes. And that they think it's OK for him to swear at the upset mother of a Down's Syndrome child in his audience.

Maybe I've been living in a happy little bubble, but boy did it burst today.

Perhaps it's hit me so hard because I would have paid money to see Frankie Boyle perform if he came here, and I had to ask myself the deeply uncomfortable question "what would I have done if I was in the audience?"

Of course I can't answer that, and I'd love to imagine that I would storm out in defiance...but the reality is that I might have uncomfortably squirmed in my seat and said nothing. It's hard to be the single voice of dissent in the crowd, and I applaud the lady who challenged him.
Maybe anger would get the better of me and give me courage, though, I just can't tell.

While I was abusing the sorry greenery, it also struck me that intolerance of those with disabilities is ingrained in our histories.
When I was a child, there were no kids around with disabilities....because they were ALL institutionalised. They weren't spoken of, and they were never seen. Ergo people with disabilities must be something to fear and loathe, right?
Even the bible talks about unclean spirits and possession by devils... vilifying those who are 'different' as being evil.
There are religions who believe that those born with a disability are paying for their sins in a previous life (which also neatly absolves them of any responsibility towards them) and breaks open the ugly path towards abuse and derision.

This evil culminated in the eugenics movement which involved not only Nazi Germany exterminating all who were considered undesirable, but also saw Sweden enforce the sterilisation of 62,000 people with learning disabilities for fear that they would breed and contaminate their race.
It is deeply disturbing to know that this practice was not only acceptable, but actively encouraged...bringing me back to the Frankie Boyle audience.
Do people who find humour at the expense of the disabled also believe that the world would be a better place without them?

Historically, infanticide of disabled children was practised, and even enforced, in some societies but we like to imagine we have moved on since then.
When derision is poured on our babies by the likes of Frankie Boyle, and when audiences pay to be amused by this derision, it puts a chill in my heart.

My Social Butterfly

2010-04-01T20:55:00.000+01:00

Bob was quite the social butterfly last weekend, as he was invited to the birthday party of the exquisitely pretty Belle (daughter of the fabby Taz ) which he attended in Drogheda, en route to the hills of Wicklow to visit his uncle John and his bird Alison (got all that??? good, coz I get confused).

We were a little apprehensive, as Bob didn't actually know anyone at the party and it was in a place he was unfamiliar with. But we were among friends so we thought "even if he does (schlock! horror!) behave like an autie kid", that no-one will raise an eyebrow.
Apart from having to carefully guard the birthday cake, and marshal the exit in case of a daring escape attempt, all went exceedingly well. I would, however, advise anyone who invites Bob to future birthday parties to lock up their marshmallows, as he jealously guarded them throughout (mostly in his stomach).
He had a hesitant start, but was seduced into the main play area by bubbles and a big orange ball he shared a brief, but passionate, fling with.

He also loved the jungle gym that was produced later on, and used it to work off the marshmallow sugarbuzzz.

It is a big deal for an autie kid to be invited to a Regular Kid's birthday party in his own right...not as an after-thought tag to a big brother or sister. I want to thank Taz from the bottom of my heart for treating my son with respect, acceptance and a whole lotta love. You rock honey!

Bob's Dad and the Elder Toads collected us from the party and we braved the M1, the M50 ( Jazzy's *cough* favourite road) and the M11 / N11 (wish they'd make up their minds), with only the occasional groovy wriggle from Bob's seatbelt, and not too many demands from the elder toads to stop looking at each other.
Road-trips are FUN!!!

After our recent episodes of moonlight screenings of Dora and Fireman Sam, we were a little worried that another dose of unfamiliar surroundings might be the undoing of our recovering Night Owl.
Thankfully, our fears were unfounded and he slept like a....well, not quite a baby, but a 5 year old autie kid who had been partying all day.

On Sunday morning we had an episode (euphemism for minor-ish meltdown) precipitated by a fruitless early morning search for "Bob on YouTube", but an extra-special blanket hug from Auntie Alison (she adores being called auntie heeheehee)

and a visit to a nearby waterfall calmed his frazzled nerves....(OK, and maybe ours as well).

Hey, we survived An Unusual Weekend Chez Bob (the pilot episode of a future mini-series) and feel the better for it.
And to think we were worried about parties....bring 'em on baby!!!

Strange Fruit

2010-03-26T00:03:00.000Z

I really have to stop doing housework, as I'm on a bit of a roll with it lately.
The laundry's done, the dog is polished and the outstanding bills are alphabetized on the notice board.
The only fly in this blissfully domestic ointment is that I keep having goddamn Deep Thoughts.
They're a bit of a pain in the arse, truth be told.

The bubble that keeps rising to the top of my mental morass is a question, and it is this;
"What motivates us???"

It's been bugging me, as sadly there seems to be very little nobility in what forces me to go through my daily motions.

I gave up my job as a Practice Nurse a couple of years ago as my juggling skills (mum, wife, autism expert, supermodel etc etc) were not as stretchy as I would have liked.
I have had an on-going love affair with Depression, which I find difficult to abandon, despite my best efforts with some good pills and clean living (pah!).
Depression and I have a deeply dysfunctional relationship, where mostly we can leave each other alone, but occasionally the tempest overtakes us and we ROCK.
But, to wander back to the point, my life's direction veered waaaaaaay off course due to Bob's autism and things are not as they were...
(I feel a 'ship-being-blown-off-course' metaphor coming on, but I am manfully resisting)...
...but I wonder if what motivates me to Do What I Do has changed because of it?

With all my heart I want a nice, clean home where I can raise my kids and love my husband.

The husband bit is easy, the raising kids bit "challenging" (this is a Really Stupid word we are supposed to use in interviews to describe something that sometimes is really shitty)...but my motives behind wanting a nice, clean home are less clear.

If I was to do one of those brain-storms we used to do as students, the words shame, duty and defiance bubble to the surface.

Shame, because I would hate people to think I'm a lazy article, but even worse that I (heaven forbid!!!) couldn't cope.

Duty, partly due to the 1950's annuals my aunts gave me when I was a gal, when Proper Wives were married to a set of pipe-and-slippers, wore aprons (eeeeeeeek!!!), and martyrdom was a goal to aspire to.
Yeah, right.
Hate it, but the crumbs of it are still there.

And defiance, because (see above) I would be LIVID if someone thought "God help her, she can't wash the floor because Bob has Autism".

I guess Reason gives me comfort, and even though it's probably my peri-menopausal clock ticking, I get a kick from letting the odd bubble rise and exposing it to sunlight.
Most of the bubbles are just too painful to look at and are best left where they are (there's nothing like a bit of Irish Catholic Repression, but goddamn it we're so good at it).
But that's what housework does to me folks...and even though the tedium of it is like mass on Palm Sunday, it does seem to agree with my temperament on some level.
I guess it's like an Irish version of meditation, with the added bonus that the loo doesn't smell like an Oasis tour bus.

Love, shame and defiance are an uncomfortable mix, but I've drank weirder cocktails.
What's shakin' in your cocktail maker???

A Week In The Life Of....

2010-03-19T21:36:00.003Z

Earlier this week Bob had his IEP (Individual Education Plan) meeting at school.
This is the regular meeting we have with Bob's teacher to review his progress and set new, measurable goals. Properly done, it's a great opportunity for dialogue and real teamwork between parents, teachers and The Child.
It was a roaring success. Bob and his teacher are a match made in heaven.

This was in the middle of a couple of weeks that took off from the starting blocks with a visit to the ENT clinic in Beaumont with The Teenager, a trip to the A and E Dept in Drogheda with the same Toad but a different malady (followed by review the next day at the fracture clinic) and several dental and Speech Therapy appointments in between.
Life was then catapulted into warp speed by Himself having laser eye surgery which necessitated two days of Nervous Wife negotiating motorways, and much juggling of children.
The juggling is a metaphor, of course (I love a good metaphor...goes very well with a nice Shiraz).

Interwoven into this manic tapestry were threads of a small child painting the town a queasy shade of brown with materials best flushed and forgotten about. Lets just say that Hunt The Poo has become a much loved game in our house.
This prompted the launch of my new Facebook page called The Bears In The Woods Club (coz we all know what they do best), which I proceeded with great haste to completely ignore, as I tried to salvage some small part of sanity into the whirlwind that has settled over Planet Bob.
Seriously though, I have great hopes for this page as so many of us struggle with our autie kids being incontinent and problems can be shared, halved and maybe even solved here.

My Forgotten Child (aka Ellen) felt that this would be a good time to develop phantom pains in her knees, earlobes and eyelashes as this seemed to be the only way for her to grab a few paltry crumbs of attention. An emergency trip with Bob's Dad for hot chocolate and bling-buying in 'Claire's Accessories' ensued (probably condemning her to a life of searching for fulfillment by flexing the plastic), but for the moment she's happy with her glittery hairbands and a nice afternoon alone with her Dad.

So, I decided to not so much fall off the wagon, as drift gently from it.

A nice glass of red really helps my tired eyes to view the laundry monster as a Tracy Emin-esqe work of art, rather than a fermenting mass of moth food.

By this logic, my life has descended into a veritable art gallery.

I have a 14 mile drive home from Bob's school, which gave me plenty of time to reflect on the meeting.

It struck me that we are in the fortunate position of being able to embrace the goals of Bob's IEP, without living in the future, because the danger of living in the future is inherent in setting yourself any goal ("I'll be happy when Bob is toilet trained/ I'm a size 10/ Eddie Izzard becomes Taoiseach"...you know the drill).

Therein lies the clear and present danger of missing what's in front of you Here and Now.

We gotta love our kids just the way they are.

This is not to say that we surrender and refuse to move forwards...it means finding your comfortable stride, while stopping every so often to jump on the trampoline (Bob Dad's job, due to my bladder's disagreement with gravity) or just have a cuddle.

Life can sometimes stink of poo, but we can always use it to fertilise the roses.

Do It With Style

2010-03-09T21:02:00.000Z

I have bursts of illumination when I'm doing the ironing.
I don't know if it's the combination of electricity and steam jolting my brain into (temporary) lucidity, or if my thoughts are lulled into a hypnotic (...oh, OK, bored then) trance-like state, allowing Deep Thoughts to rise to the surface.
Luckily, I don't iron often. My brain might melt.

Anyway, the Deep Thought I had was that I finally feel comfortable with the way I am helping Bob along his path.
We have the luxury of being almost 3 years post-diagnosis, so I am well past the gnashing of teeth and rending of clothes stage. These days Autism is such an integral part of our lives that we don't even notice that sometimes it's Really Really Hard...it's just the way it is.

So Bob was in the bath, while I was ironing on the landing beside him. We were "chatting" and I was getting him to pour the water from a jug to a cup, partly to stop him drinking it (no need for laxatives in our house) and partly because our OT said it was a good way to develop fine motor precision.

And I thought "Wow! OT and ST have become such an ingrained part of our lives that we just do it informally all the time".
This was a really big light-bulb moment for me.

Three years ago I was almost demented trying to find a space in my house to transform into a sensory/education room where information would be magically absorbed by osmosis into Bob's brain.
Well, it would have to be magic, because I realized that even if I did have all the coolest equipment and the best education programme, that I didn't have the skills to actually teach my son.
Oh, and I wasn't a Speech Therapist, or an OT or a psychologist either.
Silly me.

And even if I did have all the cool stuff, that I would need to staple gun my child to a desk to get him to sit for any longer than 15 seconds. (I never did find that damn staple gun...I think my Social Worker recognized the crazed look in my eye and hid it).

At the time, I was desperately trawling the net for something, anything, that would help me help my child. My head was a swirling mess of floortime, ABA, Teacch, diets and all the other stuff we cram into our consciousness in those first awful months. I was paralyzed by the belief that everyone else seemed to have strict teaching schedules and nifty educational programmes. I was convinced that I was failing my son because everyone else was doing important stuff, while I was doing the funky headless chicken dance.

As the months and years moved on, and Bob progressed from preschool to Outreach, I was being drip-fed the skills I needed in a way that I could use them.
One week the ST might say "hold the biscuit up to your nose so that he has to look at your face" , and I would do that so often that it became normal.
Then the teacher might write in Bob's journal that he works really well when his reinforcer is clearly visible, as he understands that he can't have it until his work is done. So we do that without even thinking now, and it works like a charm.
The OT might mention that working on his upper body strength is a vital part of developing writing skills, so while we're playing I'm aware that it's helping his penmanship.

I'm not a quick thinker, and it takes a long time for understanding to crystallize in my head. I'm not being critical of myself, it's just how I'm wired up.
Now I finally understand that I can tackle Autism Bob-Style, and that there is no right or wrong way to teach our children. I don't need to beat myself up anymore.

My style is informal, slow and fun. Sometimes it means a little desk work, but mostly it's making him hand me a PECS strip to ask for peanut butter on toast, or coaxing him to say "ready, steady....GO!" before pushing him on the swing.
If my Autie style was a person, it would be Samuel L. Jackson.

It took me a long time to reach this point, but I invite you to consider what your Autie Style is, and above all to remember that your style is your own, and you and your child and your personal set of circumstances have created it.
Gucci may suit you, but Prada might be my thing. Ain't we looking good on it???

Vote for ABACAS to help them win €5000 from AIB

2010-03-04T13:49:00.000Z

With the compliments of Andra, I have copied her blog to try to get as many of you good people as possible to vote for ABACAS school for autistic kids in Drogheda. €5000 would go a long way to help provide essential equipment and services for our kids.

Abacus Drogheda Needs Your Vote: in the AIB Better Ireland

Abacus Parents Assocation is working everyday to maintain the additional services which are essential to the most effective intervention for our kids.

Abacus Drogheda is in the final 3 for the AIB Better Ireland grant scheme.

The group who comes 3rd gets €2,000,

2nd Place will get €3,000

But If we win we get €5,000 !!!

You can help simply by Texting:

DROGHED-B to 51303 as many times as you can. And by telling everyone you know to do it too.
Texts are charged at the standard text rate

Go to: http://www.betterireland.ie/vote.html by clicking here

And then select: Louth in the County List and Drogheda in the Branch List,... See more

Then select B for Abaile

You can vote once per day per email address. So if you have several email addresses please place a vote for each one. And it costs you nothing.

99 Things About Me

2010-03-03T14:39:00.000Z

I decided to do my 99 things ala Jen, Maddie and Hammie.

From the list of 99, I highlighted the ones I did (embarrassingly few) and have posted them for your viewing pleasure....point and laugh as you will.

99 Red Balloons (or something...)

Started your own blog
erm, this is it

Slept under the stars (as long there's a roof between us I'm OK with that)

Played in a band

Visited Hawaii

Watched a meteor shower

Given more than you can afford to charity
I gave £20 to Children In Need when I was a student, and that was good drinking money

Been to Disneyland

Climbed a mountain

Held a praying mantis

Sang a solo

Bungee jumped

Visited Paris

Watched a lightening storm
they scare the bejesus outta me, but I love them

Taught yourself an art from scratch
marriage, parenthood, working-motherhood, full-time mammydom...oh, and knitting

Adopted a child

Had food poisoning
wanted to die

Walked to the top of the Statue of Liberty

Grown your own vegetables

Seen the Mona Lisa in France

Slept on an overnight train

Had a pillow fight

Hitch hiked

Taken a sick day when you’re not ill

Built a snow fort

Held a lamb

Gone skinny dipping

Run a Marathon
(erm, I may have walked/hobbled the women's mini-marathon many years ago)

Ridden in a gondola in Venice

Seen a total eclipse
(I sang total eclipse...)

Watched a sunrise or sunset

Hit a home run

Been on a cruise

Seen Niagara Falls in person

Visited the birthplace of your ancestors
yup...been to the Lourdes Hospital in Drawda many times

Seen an Amish community

Taught yourself a new language

Had enough money to be truly satisfied
(are you insane???)

Seen the Leaning Tower of Pisa in person

Gone rock climbing

Seen Michelangelo’s David

Sung karaoke
(not even when pissed...I sound like a cat in a bag)

Seen Old Faithful geyser erupt

Bought a stranger a meal at a restaurant

Visited Africa

Walked on a beach by moonlight
with James a couple of years ago...we walked along Rossknowlagh Beach from our hotel to the restaurant on our last escape...it was lovely

Been transported by ambulance
never as a patient...I'm cheating here as I used to be a nurse and did a good few patient transfers between hospitals...I've hankered after a blue light on my car ever since

Had your portrait painted

Gone deep sea fishing

Seen the Sistine Chapel in person

Been to the top of the Eiffel Tower in Paris

Gone scuba diving or snorkeling

Kissed in the rain
lots of times...I live in Ireland for feck sake

Played in the mud

Gone to a drive-in theater

Been in a movie

Visited the Great Wall of China

Started a business

Taken a martial arts class

Visited Russia

Served at a soup kitchen

Sold Girl Scout Cookies

Gone whale watching

Got flowers for no reason

Donated blood, platelets or plasma
(they won't take mine as I lived in the UK... apparently they fear I may be a Mad Cow)

Gone sky diving

Visited a Nazi Concentration Camp

Bounced a check
yep (*hangs head in shame*)

Flown in a helicopter

Saved a favorite childhood toy

Visited the Lincoln Memorial

Eaten Caviar
(the stuff that looks like sheep poo??...ehm, no)

Pieced a quilt

Stood in Times Square

Toured the Everglades

Been fired from a job

Seen the Changing of the Guards in London
I lived in London for 10 years so I've seen it a few times...it's really impressive. They have very shiny shoes and fluffy hats.

Broken a bone

Been a passenger on a motorcycle
Not quite sure if it qualifies as a motorbike, but James and I rented a motorised hairdryer years ago on holiday in Crete and scooted around the island. Was a great way to travel, if not for the maniac drivers and the hairpin mountainy roads (with NO crash barriers!!!)

Seen the Grand Canyon in person

Published a book

Visited the Vatican

Bought a brand new car

Walked in Jerusalem

Had your picture in the newspaper
"Have You Seen This Woman....?"

Kissed a stranger at midnight on New Year’s Eve

Visited the White House

Killed and prepared an animal for eating

Had chickenpox

Saved someone’s life

Sat on a jury

Met someone famous

Joined a book club

Got a tattoo

Had a baby
I'm a professional baby machine...OK, then I had 3

Seen the Alamo in person

Swam in the Great Salt Lake

Been involved in a law suit

Owned a cell phone
my 1st one looked like a brick

Been stung by a bee
yeah, but he regretted it

Jeanie in a Bottle

2010-02-28T10:31:00.000Z

I have an old friend who in the past has helped me to cope with some really difficult times. When I felt shy in social situations I could always rely on her to boost my confidence and make me feel part of the crowd. When I felt stressed, or bored, no-one else would do. She was always available...and was often on special offer from my local off-licence, so she didn't cost me too much either.

The trouble with alcohol is that it isn't honest. It covers up who I really am, and makes me feel like 2lbs of shit in a 1lb bag the next morning. Parties and social nights out terrify me and I need to start saying "I'm sorry I won't go because I feel horribly uncomfortable at them...it's nothing personal", instead of dragging my quaking butt to the bar and drinking until the fear passes.

When I have a difficult day with Bob (I'm afraid non-autie parents just don't get how difficult Difficult is), by 4pm I'm texting Bob's Dad to swing home via the offie. Then I can survive 'til 10pm that night knowing that later on I can sit an relax with my old pal.

The odd glass of wine was always lovely, and that first sip is the heavenly moment when the day's stresses melt away.

But.
Since Bob was diagnosed with Autism, and I gave up my job (which I loved, but which was impossible for me to sustain), I spend my days cleaning up poo, pee and puke (as he enjoys eating non-food items like aeroboard and books). My life has become a treadmill of speech therapy, occupational therapy, TEACCH, ABA, PECS, constantly locking doors and gates as Bob is a bolter etc etc etc. The list is endless. This isn't a pity party, or an excuse for looking for tranquility at the bottom of a wine bottle, but when I take a step back from the exhausting chaos of my life, I can see why the odd glass of wine has snowballed into half a bottle every night.

My image of an alcoholic is someone swigging out of a brown paper bag in a railway station with pee stains down his trousers. Or a wife-beating bully who would see his kids without shoes before going without his whiskey. It's not an ordinary autie mammy who can function perfectly well without a swig of vodka to settle the shakes in the morning...it's just that the crutch I've been leaning on is starting to lean on me.

I don't know if I'm an alcoholic, but I do know I need to stop and that I'll really miss it.
I'm afraid of how I'll cope when every fibre of my being is convulsed with tension, or when the the constant autie newsreel in my head just won't stop.
I hope I will have the strength to find other ways of dealing with that.
.

Would The Real Slim Shady Please Stand Up??

2010-02-20T21:19:00.000Z

Sometimes I feel like The Artist Formerly Known As Prince.

OK, so it's possible that I don't have his talent, his fortune or his penchant for stacked shoes and velvet jackets (although I do love purple...see we have loads in common)...
...but there is some common ground between myself and His Preening Purpleness.

We have both undergone dramatic identity shifts in which we continue to look and sound the same, but what motivates us has changed to the point of being unrecognisable to our Former Selves.

Sadly, I didn't get to write albums and throw magnificent tantrums (I still haven't forgiven him for cancelling his Dublin gig). Instead I was soundly squished like a bug ( a fabulously glamarous LadyBug, of course) by the Autism SuperTanker, and while I lay in an sticky splat of grief on the road I had a rather pressing decision to make.

I had to either get up, reapply my mascara and whup some Autism Ass...or I could lie in my pool of self-pity and wait for the next truck to come along.

Oh Gawd, enough already with the motorway metaphors. I sound like a hungover Jeremy Clarkson.

So of course I got up.

I slept, ate, drank and dreamt Autism. I immersed myself in the latest research and flooded my thoughts with causes, theories, treatments and options.
I consumed Autism, and it consumed me.

Today, while I was tidying up, I was listening to Prince (sorry, Squiggle) belt out Let's Go Crazy and I had one of those thunderclap moments. It was profound enough to make me put my mop down and have a cup of tea.

I thought "if Bob suddenly became non-autisitc, who would I be???"

What would I talk about, think about, read about?

Autism has become so deeply embedded in my psyche that I can't separate myself from it.

I'm not saying this is a bad thing. It is what it is, and I need to be this way to help Bob be all that he is capable of becoming.
It's just so vastly different to the person I may have been otherwise. It is entirely possible that I'm a better, stronger person because of Bob's Autism...but we'll never know.
I just don't want to vanish beneath the endless folds of Autism that envelope me.

I can't seem to read books anymore, and I used to chew novels up for breakfast and spit them out by teatime.
I find myself steering each conversation I have back to Autism, even if the original subject was global warming, or lipstick.
I speed read the papers, searching for the word Autism, and only then will I focus enough to read the entire article.

I think it's time to reclaim who I am...to get a little more balance in my life.
I think I may write myself a prescription for some Selfish Tablets, and if that involves time out for some exercise, shopping and the odd facial then so be it. I already have the full support of Bob's Dad, so the only thing stopping me is the feeling of being rooted to the ground by autistic superglue.
I could live with changing that.

And the Sunshine Award Goes To......

2010-02-13T22:17:00.001Z

Cripes! I've won an award.
And I haven't had a chance to agonise over Valentino/Vera Wang, an up-do or a spill of golden curls over my tanned shoulders (erm, it's possible in this dimension that I have a short, dark, frizzy mop straining to make contact with my pasty bingo wings....but as this is my blog I've decided that I look like Gwynnth Paltrow...live with it, people).

OK...reality check. I'm sitting (some unkind people might say "slouching") at the dining room table wearing an eclectic ensemble of Principles (bankrupt), Jane Norman (nice) and Pennys (nasty).
My look is Vintage Bag-Lady meets Hairspray Explosion at the Salon.
It's next season, so you may not be familiar with it. You gotta keep your finger on the pulse, folks.
I'm thinking Viviennne Westwood meets Mick Jagger.

I got a very welcome message from my favourite girl-crush Jen who awarded me the coveted Sunshine Award for being fabulous and shiny, and other nice things.

But with the award came a challenge to choose my favourite blog to pass the love onto.

There is the insightful Blue Sky, who will not give up on any problem until the solution shows itself.
There is, of course, Jen herself, whose blogs I look forward to like no other. I like to have an emergency pack of Tena Lady handy when I read her blog, as deep belly laughs are a hazardous adventure for a lady of a certain age (especially when my bladder has been kicked into touch by three fully loaded pregnancies).
The tenacious Taz writes about her experience of adopting a critically ill baby (who kicked TB in the ass, but was also born an autie). She writes from the heart about her A-Ha moment (not to be confused with the dreadful 80's Swedish band) which resonates with me to this day.
The feisty JazzyGirl reminds me (shock! horror!) that there is Life Outside Autism. Who knew??
The proud Daddy who is brave enough to share his feelings (gasp! guys have 'em!) about his gorgeous son's diagnosis.
The courage of Lora who manages not only her son's autism, but also her own mental health issues, is a constant inspiration to me.

But there can only be one winner of the coveted Jean Carroll Sunshine Award (grab your Tena's ladies)....my head-melt was thankfully short-lived, as it was abundantly clear that the First Lady of Autism, Lisa, is most deserving of a place so deep in my heart that it would take a crack team of cardio-thoracic specialists to find her.
FYI they'd need hard hats and a canary.
She only writes three blogs (lazy article), and has been the hand on my shoulder since alarm bells started to ring over Bob, all of three years ago.
One diagnosis, one grieving process and a wealth of pragmatic, loving advice later, I am the proud mother of one fabulously barmy son.
I would not be here without Lisa.
Oops...I feel a Gwynnth moment coming on....hope my make-up artist applied waterproof mascara.
XXX

iTouch, YouTube, WeWin

2010-02-07T01:46:00.000Z

We have discovered an entirely unexpected benefit from the iTouch we bought for Bob.

His Bobness has discovered the delights of YouTube, and has learned to type "Bob the Builder" with impressive speed. It is a perefct size for his little hands, and he can whizz around it like a pro.

We have been having trouble finding a reinforcer that would hold his attention. At school his Teacher would often have to switch reinforcers several times in just one day, as he quickly bored of popcorn or computer tokens.

Meanwhile at home, toilet training for the Dreaded No.2's has been going on for over 18 months and we have variously used star charts, chocolate buttons and Bob stickers as reinforcers for a direct hit in the jacks...but nothing weathered the storm of his inattention.

We are getting kinda tired of PIK's (poo in knickies, for the newbies) and short of painting the entire house brown (with matching brown accessories and brown accents) we arrived at a point where Something had To Be Done.

The Doing Something area is usually the forte of Bob's Dad (I usually stick to what I'm good at, which is crying and drinking some pretty damn good merlot, while he mends wiring and puts up shelves), and this time was no different.

A few months ago (on the autie grapevine) we were alerted to the iTouch revolution and we thought "hey, Bob would LOVE that!".

So we gave it to him...allowed him to LOVE it...and then Bob's Dad suggested we take it away again, with the promise that it would be returned when poo was deposited in the correct account.

At the risk of being perceived as being vile, nasty parents (sometimes we're not bad, honest ), check out this lady's blog before casting judgement.

I swear, nursing was so the wrong career for me and I would have made a kick-ass banker (so to speak)...I may have had some interesting questions to answer re sweeteners for my unorthadox deposit accounts though...

Sir Bob, Lover of iTouch, Defender of the Faith (btw, I've set up a new church called Autism Rocks...not as much sex and wine as the church I'm used to, but a LOT more soulful) discovered that illegal brown envelopes do not collect interest (in any sense), but that waste in the right receptacle should be photograhed, framed and celebrated....or at least awarded an hour on the iTouch.

Today is deserving of champagne.
In fact, I may insist on it.
After a few false dawns, of Bob sitting on His Throne insisting he had produced the goods when he hadn't (the Chancer....shudda called him Bertie)...he finally came good and announced "poo in toilet...I want iTouch".

I don't imagine I will feel much prouder when I cradle my first grandchild in my arms (not that any cradling went on....that would be weird).

The point is, that Bob knew he had to do to get what he wanted. He made a demand and he was rewarded.

The carrot and stick works, lords and laydeeze.

Try it.

I Got The Blues

2010-01-31T23:29:00.000Z

Winston Churchill used to call it his Black Dog.
When I was a child, people used to refer to it as "nerves".
These days we call it depression and I'm on first name terms with it.
It's pretty well controlled thanks to my GP, some good meds and some regular(ish) exercise.

Now and again I have a dip though, when the black thoughts come swirling back and circle in my head in an unstoppable loop.
I want to unplug the phone, pull the duvet over my head and curl in a small, tight ball until sleep gives me some temporary quiet.

I am very wary of coming out (there is still a huge stigma about mental illness, no matter what century we live in), partly because it seems to embarrass other people, but mostly because I fear that people will automatically assume that it's a reaction to Bob's autism.

Now, dealing with the usual madness that makes up a typical autie day would tip the strongest, most optimistic, person into wells of despair. But people on the "outside" often don't see the hugs, kisses and sheer joy that Bob brings into our lives. And while depression can be reactive, in my case (as my GP said) I just don't produce enough serotonin.
So I take a tablet to correct the imbalance.
Job done.

I had my first bout of depression at the age of 14, in a time when the answer to every ailment was a dose of Andrews Liver Salts. It was assumed that I was just in a Really Bad Mood.
Needless to say it was ignored, but unfortunately depression doesn't Do Ostrich for very long.

Depression came back, unannounced and uninvited, at various intervals throughout my life. It squatted like an unwelcome family member until it would quietly slip away..... until next time.

As I grew older and stronger, and a little more caring of myself, I got help and haven't looked back. It just isn't always easy to talk about.

There are many of us out there.
Even when I am buried underneath my duvet, it is so important to know there are other people I can reach out to, even though, like Contrary Mary I really don't want to.
That's why it's called mental illness.

All In A Day's Work

2010-01-27T22:32:00.000Z

My theme for tonight's blog serves two purposes...it is to help me and (hopefully) you get a feel for how different the world must look from an autie perspective...
...that, and to shamelessly indulge my love of Monty Python.

Now, those of you who know me, will know that I consider autie kids (and adults) heros. We could call them pedestrian heros, as their brand of courage is banal, ordinary and everyday. They never stop overcoming their terrors and discomforts in an effort to get through each moment.

They wear clothes that irritate them.
They tolerate sounds that, to them, screech like bjork stuck in a badger trap.
They put food in their mouths that may frighten them (which is entirely prudent when I happen to be the cook) .

Sometimes our kids protest and spit, pee and streak at times we consider inappropriate.
To them they are just letting off a little steam from the constant pressure we exert on them to conform.
If they didn't pitch a fit now and again they would probably go mad.

In the clip, Bicycle Repair Man is applauded for stripping off his superhero gear and doing something ordinary....sound familiar???
We do this every day with our kids (stop being special and do something boring!!!) ...I really hope we don't chip too much off their personalities in the process.

Again, old friends will know that a worry of mine is the ethics of forcing a person to conform to a way of life they do not choose, and may indeed find intensely uncomfortable.
But Bob will always be a hero, whether he's saving the world or fixing a bike.

I hope you enjoy the clip.

7

2010-01-19T23:54:00.001Z

Hmmmm...my mission (should I choose to accept it) is to share seven pieces of information about myself that I haven't previously blogged on, and that most people wouldn't know about me. I considered approaching this from a seven deadly sins angle, but figured you would round up a posse and lynch me when you discovered what a lustful, slothful gannet I really am.
I kinda like being alive and in full use of my limbs, so I scrapped that idea.
The only other model I can think of using is the patented J.Carroll Jump In With Both Size Nines and See What Happens approach.
That's a real writer's tool, I'll have you know....
...(with the emphasis on tool).

Okay...got my Doc Marten's on ...here we go...

(1) When I was very young (about 4 I think) I could, and did, bite my own toe nails.
This memory used to disgust me, but now I'm pretty impressed.

(2) My earliest memory is when I was 18 months old , when my little sister Mary (there's always a Mary in an Irish family) was a newborn. I could see the corner of the kitchen table way above me, and heard my mother say (to my dad) "Tom, will you bring the child with you?".

Now I can't remember what I ate for lunch.

(3) My big brother Kevin taught me to read and write before I went to school at the age of 3. Because of him I could read way beyond my years, and read 'Roots' by Alex Hayley at the age of 9. Unfortunately, people assumed I was really clever because of this (I wasn't) and had Inflated Expectations of me. Now that I think about it, it's all Kevin's fault. What an evil bastard.

(4) I still wore a nappy when I started school.

(5) I was 16 when I started 3rd level education!!!! (I had ditched the nappies by this stage). It was a science course on DkIt (known to us oldies as the Regional in Dundalk).
I lasted 2 months.

(6) When I was 17 I left home and hightailed it to London. My vulnerability absolutely horrifies me now that I have kids of my own, but it was the best thing I ever did. I love London, and it was the making of me.

(are we at 7 already???? I thought this was gonna be really hard!!)

(7) I met the Love of my Life at nursing college in Romford (white stillettos rock!!!!)...I had to travel to Essex to catch a 'Blayney fella. People still occassionally ask me if he is a "male nurse"...considering he fathered three children with me, I feel the proof is in the pudding.

So there ya go, Lords and Ladies. Seven Sordid Secrets.
XXX