Assistance Dogs, Magic and Autism

Last November I got a phone call that I was anticipating for a few years.

It was the lovely Aileen from Irish Guide Dogs for the Blind telling me that  an assistance dog had been matched to our family, and that I would need to go to Cork for a week for training in all things canine.

It was like winning the lottery, losing a stone and finding the cure for cellulite all in one go.

My over-exuberance may have been notable, because Aileen had to practically fan me down and feed me sedatives over the phone.

She explained to me that having an assistance dog is not magic and that the success of the partnership depends on hard work and willing participation.

Our new dog would not lope home to tell me that Little Bobby had fallen down a well and was surviving on locusts and gogi berries.

She would not cure my son's Autism.

Even worse, she would not iron, make dinners or wash the floor.

I mean, just what kind of assistance dog was she???

Aileen told me that her name is Vikas (pronounced Veekas) and she is an almost 2 year old lab/retriever cross.

In Cork I would learn all the tricks necessary to enable my family to venture out of the confines of our barracks, and to do stuff that other *cough* normal families do without thinking.

Stuff like going to McDonalds, feeding the ducks and (best of all) wearing heels because Vikas removes the requirement to sprint after a bolting (occasionally semi-nude) child.

Stuff  like not needing to play chicken with traffic (you should try it, it's fun) because your child is safely attached to a well-behaved pooch.

Stuff like not needing to have the local Gardi, and our friends and neighbours, on speed dial, to help us when Finian teleports at warp speed through the Monaghan countryside.  We know he teleports because no-one  ever sees him vanish.

So I learned how to do all these things and returned home to Monaghan with high hopes.

Finian's first attachment to Vikas with Aileen on the Black Island bridge

Vikas became part of our family in no time, and over the next few months we got to know each other and overcame a few minor teething problems with Aileen's ongoing support.

We enjoyed pretending we were a normal family (who woulda thunk it?) and basked in the sympathy of people who  said things like "Jaysis is the poor child blind now as well?".

But the best was yet to come.

Himself walking the dawg 

Vikas is a diva.

She needs love and adoration like the desert needs the rain.

 If adequate homage is not paid to her, then she will root it out like a heat-seeking missile of love.

Finian, being the shortest in our house, is invariably the one she will stick her face into and unrelentingly beg, wheedle and lick into submission.

She literally shoves her face into his (I'm paraphrasing here OK, just go with it) and says playwithmeplaywithmelovemetalktomeadoreandidoliseme .

In the last month we noticed that Finian's eye contact has switched on like a big lamp in his social darkness.

And where there's eye contact, there's the ability to observe facial expressions, to communicate and to develop empathy.

And all because Vikas will not be ignored.

He's processing more of what we say to him and has for the first time ever, told me he felt sick, where he felt sick and that he wanted a band-aid for his sore throat.

The enormity of an autistic child having the ability to communicate this is, well, enormous.

Finian attends occupational therapy every week as well.

My feeling is that between OT and the untested but promising method of shoving a dog in his face, that he has taken giant strides where no man has, erm, stridden before

(some fella that hoofed around on the moon said that).

Who needs reflexology when you have an assistance dog?

No dog breath issues here

"That fella in North Korea is mad.  We should do something about him"

 So Aileen told me that having an assistance dog is not magic, but part of me wonders if they didn't hide the wands and spell-books before I got there.  

Lots of us special needs parents have become hardened by the bad stuff that comes with Autism (the grief, the financial strain, the social exclusion, the hideous obligation to watch Bob the Builder etc etc).

Your child being diagnosed with a life-long disability is enough to make the best of us collapse, but it is the unparalleled ability of the "services" to make life even harder for us that undoes us completely.  The irony of those who are paid to help us actually making life worse still shocks me (even after 6 years), but any parent who has to decide between buying heating oil or occupational therapy for their child will know what I mean.

So when I spent a week with the Irish Guide Dogs, as well as opening a whole new world to my family, they gave back to me something that no money on this earth can buy.

Lock up your cliches, coz none of them are safe, but they gave me hope.

And a diva called Vikas.

Just where is my silk pillow and tiara?

Putting the Awe into Autism

There are many times every day that I wish I could give my son a pill and make his Autism go away.
Not him, just his Autism.
The bit that makes him scream in frustration when I can't clean an invisible smudge off the computer screen.
Or the neural misfire that means I have to follow him to the loo in case he eats the toilet paper.
Or the part that makes him liable to down his keks and pee in the church car-park (he has astonishing aim).



Lots of parents feel guilty for even thinking this, never mind expressing it, but some perverse part of me enjoys airing my mental dirty laundry and exposing it to daylight.
You could call it therapy, if you're kind.
(I just call it dumbass lack of social etiquette.  You can see where the Autism comes from)

these are my actual knickers

Recently I came across an article that found that a drug used to treat sleeping sickness was found to have a positive effect on autistic traits in mice (mice have Autism??? how can they tell???).  You can check it out here if you feel you've given birth to an unusually large rodent.
Finian (and therefore everyone else) was having a bad day and my immediate thought was can I order a truckload of these mofo's NOW???

I know I'm putting myself in the line of fire from many autistic people and their families who feel that Autism is not just part of who they are, but is integral to who they are.
Many people argue that Autism is not a disability and to treat it as such is disrespectful   But from where I'm standing, it's pretty damn disabling when you have to spoon-feed a child who's almost 9 years old.  And check his bum to make sure he's wiped it properly.  And develop ninja reflexes, honed from years of ducking to avoid head-butts and back-handers.
So if a drug was developed, that was shown to be safe and effective, I'd be Queen Queue in Queue Park Central, wearing my crown and waving my prescription at my loyal subjects.
I don't think I'd be alone  either.

But it occurred to me that there's an aspect of my son's Autism I'd miss.
He doesn't have the same filter buttons the rest of us have, so he doesn't tone down any of his emotions.
When he's angry, he makes the Incredible Hulk look pale and uninteresting.
When he's excited he turns wall-bouncing into an Olympic event.
But when he's happy he turns that knob up to 11 in  true 'This Is Spinal Tap' style and joy spills out from him  in a wild and wonderful flash-flood.
I like his polarized emotions and I kind of envy his ability to freely express himself  without shamefully fearing what the Whisperers may  say behind their hands.
Maybe that's evolution.
And maybe I would think twice before joining that queue.

Self Harm

Lots of kids with Autism self-harm.

It's often in response to not having the ability to otherwise express rage or frustration.
Sometimes it's to satisfy a sensory need.
Occasionally it's a manipulative ploy aimed at controlling someone else's behaviour.
Now and again we're really lucky and can figure out the reason for this behaviour, and take steps to prevent it.

So far, so text-book.
These are pleasing, neatly academic explanations for a perplexing behaviour, which can be dispatched with a  few charts and strategies, right?

Now, read that again and this time imagine a screaming child, purple with rage, gouging his own face with his nails to "make it bleeding".  
In his frenzy, he is beyond hearing words of comfort.
The  strategies suggested to deal with the immediacy of the behaviour are shown up to be limp lettuce in a bad salad.

As his carer/therapist/whatever-you're-having-yourself, I am supposed to calmly engage my son in vigorously physical activity to soothe his sensory deficits and to verbally name his feelings to help him understand that this is an emotion which will pass (without betraying any emotion myself, which he may perceive as a reward for his behaviour).

No bother.
Just hang on a sec while I surgically remove my emotions and consult 'Self-Harming for Dummies (the Mother's an Idiot)' guide.
On my way to pick up my best-actress Oscar as I smile benignly while I wash blood from under his fingernails.
With my psychology degree tucked into my back pocket.

Me accepting my Oscar.  Honest. 

Frustratingly, most special needs parents aren't well-educated psychopaths.  Hate that.
The best we can do is offer damage limitation, band-aids and a ton or two of love.

I have found that the best solution (for me) that helps me deal with the self-harm episodes, is to look after myself.
I don't mean a spa weekend or a shopping trip to Brown Thomas (I'm pretty sure I can hear my credit card laughing hysterically from the depths of my handbag.  It's got a mean streak like that.).
But little things like getting enough sleep and eating properly, which add up to give me the energy to cope with the next storm.

A walk with the dog.  Tea.  A bit of good-humoured cheek from my oldest son aimed at my proximity to the ground (OK, he calls me shortass.  I like think it's affectionate).

Recognizing all the small, good things add up and tip the balance to a place where I can cope.
Small and good....just like an Irish special needs mother; just with more woolly hats (I walk a lot, and Winter in Ireland expands to include Autumn, Spring and and about 8 weeks of Summer) and a a lot more caffeine.

The Intriguing Case of the Autistic Stylista

As a child I was a big fan of mysteries.

I loved Nancy Drew and wanted to be the token Irish person in the Famous Five (I wonder how Enid Blyton would have handled that...I'm pretty certain my character would say "begorrah" and "top o' the mornin' to you"  a lot.  And she'd probably make me look like a freckled spud. So, in retrospect, I'm glad that dream never came true.)
As a nursing student, my favourite module was psychology.  I just couldn't get enough of trying to figure out how, and why, people behave the way they do.
When I grew up, Fancy Nancy was replaced by CSI and Criminal Minds.
Then CSI was replaced by Autism, the biggest mystery of them all. 

I got to super-sleuth my way through conundrums as puzzling as 'The Incredible Mystery of the Streaking Toddler', 'The Fascinating Tale of the Boy Who Ate Sand' and 'The Curious Incident of the Poo in the Nighttime'.
Sherlock Homes was in the building and wearing lip-gloss.

As time went by I became quite adept and figuring out the meaning behind apparently bizarre behaviour.
For example, when Finian tells me to take his toes off (yes, he really says that) he means that he wants a cuddle in bed.  Chief Inspector Mammy deduced that one night he got a cuddle after having his toenails cut.  Either that or he thinks his mother is Hannibal Lecter.

Dragging visitors to the front door and attempting to eject them with great  (but curiously polite) force does not mean that he is sick of your company, thank you very much, and that he is on the verge of barfing if he has to tolerate your mug for another minute.
He just wants to watch the tail lights on your car.
Although, I must remember to employ his method the next time Jehovah Witnesses call around  (especially the barfing bit).

So I thought I had a pretty good handle on the whole solving mysteries shtick.
Until yesterday.
Finian threw a shit-fit (that's a medical term for a REALLY bad tantrum) because he wanted me to wear a posh frock.  While we were hanging out at home. Hoovering and making jigsaws and eating beans on toast.
Maybe he's watched one too many episodes of  Trinny & Suzannah with me and decided that screeching at me would  shock me out of my current "style" rut of jeans and cardigans.
Maybe he thinks wiping the kitchen counter isn't given enough respect and deserves to be approached in heels and costume jewellery.
Either way, I still can't figure out what his angle was.

I eventually had to hide the dress on top of the fridge (I was desperate, OK?  Hopefully no-one will eat it, but in my home you can't be certain) and let his tantrum blow itself out.

I think Sherlock Holmes will have to retire without a pension.

Autism, Up Close and Personal

I thought I had accepted my son's diagnosis of Autism.

Like, he's only been officially on the spectrum for five years now.  The best before date for grieving should have expired about four years ago, shouldn't it?

Would someone fill in the date already???

Then I weaned off my anti-depressants (I was very grown up and even consulted my GP, who woulda thunk it?) and discovered that grief was playing a very long, loooooong game of chess with me.
And I really, really,  hate chess.

I wrote a blog post during my phased withdrawal from my medication which I will never, ever, post.
Not unless I want my nearest and dearest to grab their nearest white coat, pin me down and inject me with happy juice.
I just went to a quiet hell, said "Hi" to the devil and got cosy with his dearest friends.

With much leaning on my husband's broad shoulders, I am mostly on the right side of Dante's Inferno, but I'm not so much taking taking each day as it comes, as each minute as it arises.
Sometimes it's just a matter of putting one foot in front of the other until the horrors pass.

My toasty new holiday home

Riding Autism bareback, without the cushion of serotonin boosters, has opened up a whole new delicious basket of nightmares.  Yum.
Looking at Autism dead in the eye, without soft focus or misty edges, is like looking at your reflection first thing in the morning, without the benefit of make-up or a comb.
It's not pretty, but it's real.

When the drugs were out, a tidal wave of pain, fear and powerlessness rushed in to fill the gap.

Will my son achieve his potential?
Who will love and cherish him when James and I are gone?
Will be left to fester in some hateful institution, being treated like an inmate in a prison?
Will I damage him permanently by inadvertently fucking something up now?
Will he be forgotten about, abused, neglected?

Pharmaceuticals may buffer the paralyzing fears, but I don't want to see Autism, or my son, down the lens of a long telescope.

Weirdly, there is a bright side of  psychological pain; the knowledge that I am engaging with reality, no matter how unpretty.

Protection from the fears that haunt our dreams is sometimes necessary to help us function through the darkness.  We have other people to care for and other responsibilities to shoulder, so often we have to shelve our grief until a later date, when we can give it our full attention (no matter how reluctantly).

.

Last week I started to see a therapist, which totally cracks me up.
The notion of a middle aged Irish woman in therapy is hilarious.
I'm in very real danger of  making her tea and inquiring if she's been to mass lately.
My big worry about seeing a counsellor was that I'd cry.  I mean, the embarrassment.
I needn't have worried, because before I even said "howya" the floodgates opened and I was a bulbous-nosed mess of snots and tears. It was like  admitting I like Jedward while baring my arse. Luckily, she was cool with that (the tears bit, obviously not with the Jedward bit), and even though it put the capital D into Difficult, it was a very healthy thing to do.

It's so good to know that the option of medication is there, but for the moment I'm going with poking my emotions with pointy sticks.
And I'm also safe in the knowledge that, having been in labour three times, good stuff comes after the pain.


.

Teenage Dreams

Do you ever stop mid-flow in the busy hum of your life and wonder "How in the name of Methuselah, and all his beardy buddies, did I get here?"
Not in a Big Bang vs. God kinda way, but in a "why am I scrubbing the jacks when I was meant to be saving the planet?" kinda way.

I am appalled to discover that approximately three seconds ago I was 14, with ambitions to have boobs and well behaved hair.
I was going to be a world famous scientist who would discover a cure for cancer while wearing Chanel and bouncing an immaculately behaved baby on one hip.
My life would be as smooth and polished as a 1980's Filofax.

In the space of nanoseconds, I appear to have got married, given birth to children and acquired a magical laundry basket that fairies fill overnight with small mountains of mouldy socks.
I swear it growls at me some days.

I have scored a hat-trick on the baby front and have three marginally feral children who are fabulous whirlwinds of energy, but leave little room for any pretensions of order.
I have difficulty matching my socks never mind juggling a family and a career.

I'm pretty sure that if I ever made it to the bottom of my laundry basket I would find my fossilized Filofax.
In years to come, archaeologists might pore over it and wonder just who was this dynamic creature and what led to her extinction?
Or maybe they'd chuck it in the bin and say "what a complete eejit...no-one is capable of doing all that without a crack team of childminders, house-keepers and bar-tenders in the background.  Especially the bar-tenders."

And to my horror, I am still no closer to realizing my ambitions on the boob or the hair front.

If it's taken me thirty years to get exactly nowhere with my teenage dreams, I should  just about have chased them down in time to make a very pretty corpse.

But teenage dreams are too full of rock stars and Hollywood to allow for autism, depression, sick babies, financial struggles, job worries and all the crap that the universe, in it's infinite *cough* wisdom, flings at us.

They also don't allow for the joy you feel when you know that you married a great guy who can hornpipe through life's horse turds with you (I wish I'd put that in my wedding vows).
Or the thrill when your autie kid makes eye contact with you.

Or the elation when you finally match your socks.

Life is great, and it's so much better, and harder, than I ever dreamt when I was 14.

Love is...

Love is a many splendoured cliche.

It is roses, moonlit walks, the smell of a newborn baby.

It is a home-made Mothers' Day card.

It is kisses at daybreak, a cool hand on a warm neck, an awkward teenage embrace.

But love in our house will never be found on a Hallmark card.

In our home, love is...

...an animated cat called Pilchard.

This is a regular conversation between Finian and myself;

"I love you, Finian.  Who do I love?"

"Mammy loves Pilchard"

Perplexed silence 

(From me.  Finian is very definite in his answer.)

Followed by, as an after-thought, "...and Mammy loves Finian.  And Daddy and Jimmy and Ellen."

Pilchard is a computer generated cat who plays a minor role in Bob the Builder. 

I harbour no strong emotion towards the 2D moggy other than thinking it must be quite nice to have a cat you don't have to feed or worm.

OK.  Let's try again.

"Who does Mammy love?"

He sighs and makes full eye contact with me as he repeats,

"Mammy loves Pilchard"

Like, d'uh.

I can feel him mentally rolling his eyes at my shortcomings in the brain department.

Initially I was a little put out that my son thinks he is placed second in my affections to the pet of an obsessive, emotionally stunted control freak (Bob has issues), but on reflection, Pilchard is a harmless, benign sort of character.

It's not like he thinks I bear more love for Hitler, or Brian Cowen.

And it's great that he's expressing anything in relation to love at all, so I'll take that and be happy.

"I need therapy"

So next Valentine's Day, keep an eye out for a new card design.

It'll stand out from the crowds of red hearts and blooming roses.

It's blue.

It's a cat.

And it's where love's at.