Sunday, November 8, 2015

Autism & Unexpected Courage

I spend a lot of time scared.
Of course, Special Needs parents don't have the monopoly on fear...most parents are excellent at worrying about their kids, and even enjoy creating  imaginary worries for entertainment in the small hours of the night.
However, Special Needs parents have an extra-delicious menu of worries to chose from.
Fear is a constant companion, sometimes quietly nipping at the inside of our skulls, or sometimes sitting front and central in our path and preventing us from moving forwards.

Probably the most pervasive fear is  wondering what will happen to our kids when we're gone. Dealing with that is like nailing jelly to a's impossible to get to grips with, but it's goddamn everywhere.

Second to this is the fear of reaching a point where I just can't do it any more.
There are times I can barely cope with Finian in a controlled environment, so to expose him to the world at large has been a bridge too far for me to overcome.
I have become a champion avoider in my bid to protect him, which is, in fact, a bid to protect myself.


This fear became more tangible when I attended a talk on challenging behaviour at Finian's awesome school a few weeks ago.
It wasn't comfortable to think about.
Being afraid is an emotion I'm much better at avoiding than dealing with. But as the talk went on, it occurred to me that my biggest block to helping Finian cope with this world is my own ego.
It takes humility to expose yourself  to situations where you become vulnerable to judgement.
I would love to be seen as being competent, cool and in control, (with lots of alliteration) and it's much easier to do this in my fortressed house which is so secure I could easily hide John Lennon, Elvis and the second coming of Christ without raising suspicion.
It's easier not to take Finian to my favourite coffee shop for hot chocolate.
It's easier to go without milk and bread than to run the gauntlet of  Lidl with him.
It's easier to stay at home avoid any possible situation where I'm scared and unable to cope.
I don't want people to see me struggle with a large, screaming, thrashing child.  I don't want them to see me as scared, incompetent and hopelessly out of my depth.  And even when Finian is happy, I'm afraid that at any given moment something, anything, could trigger a meltdown that I am powerless to contain.
So the fear is all about me.
And it's preventing my son from enjoying his life to the full and becoming all that he is capable of.

what's life without marshmallows???

For me, one of the scariest hurdles is making myself vulnerable.
Asking for help (and putting myself at risk of rejection) is throwing myself at the mercy of another, and to get real, I would rather chew my own leg off than to feel like this.  But to move forward, this is exactly what I have to do (the asking for help bit, not the leg chewing bit obviously).
But since I attended the talk, I've been taking Finian out on short, planned trips and setting him up to succeed.  I know that sounds like yet another weary soundbite, but keeping our trips short, sticking to the plan and above all keeping Finian in the loop about where we are on our schedule, has given rise to several successful outings.

Identifying, and surrounding ourselves, with good people makes the hurdle smaller and less intimidating.
We've been to Eileen's Tea Rooms, where they give him extra marshmallows with his hot chocolate.
We've been to Burger King where he enjoys chips and coke and has, on occasion, entertained me with the 'Welcome To Duloc' song and dance from Shrek. Actually, he entertained about a dozen people and he can bust some awesome moves.
We've been on forest walks and spent time in the park.
We've even been to Lidl, where a shopping list and crisps helped.
All our trips were kept short and sweet, with an escape plan, and a watchful eye for any escalation behaviours.
This is giving us both an unfamiliar confidence that  makes us want to try it again.

The talk on challenging behaviour, pushed my own boundaries as much as Finian's.
I needed to be reminded that courage exists and that I can use it.
Finian navigates  this overwhelming world every day and is brimming with courage.  He has earned his own Purple Heart/ Victoria Cross many times over.
I'm following distantly in his wake.

Having the humility to expose myself to judgement and loss of control displaces fear as the focus of our journey, and moves Finian back as the central character to our story.
Just as he should be.

Isn't it ironic that it ended up being my behaviour that was challenged?
Progress happens in the most unexpected ways.

Thursday, September 17, 2015

Autism and Fruit Flies

It's rare we achieve any meaningful change without having to navigate some form of conflict, so one of the reasons I'm such a slow learner is that at the first echo of gunshots I'm heading for the hills faster than you can say Dalai Lama.
One reason that I'm grateful to have Autism in my life is that it has challenged, with relentless patience, aspects of my life that I would otherwise have left as resolutely unturned, unchallenged stones.
Autism is a fierce teacher who does not do comfort zones.

This morning I read an intriguing book review of 'NeuroTribes' by Steve Silberman  discussing how a strength (such as intense focus on a narrow range of interests) can suddenly be perceived as  a pathology (perseveration) upon diagnosis with Autism.

Now, having spent  15 years dreading parent-teacher meetings, knowing my oldest (neurotypical) son's  attention span would be compared (unfavorably) to a fruit fly's, I thought it was great that I had a kid who persevered on the same phonics game on his vTech.
For hours.
And hours.
And hours.
He knew the alphabet backwards, forwards, upside-down and inside-out at the age of two, long before he even had speech.
I thought it was great.
So when someone came along and said this is "not normal" I wanted to commit acts which would conclude with the need to hide a body.

But are we stomping  on a huge amount of potential by medicalising what could be a game-changing strength?
By "fixing" their perceived defects are we doing the educational equivalent of telling Usain Bolt "Listen hot-shot, your super-fast running is a bit freaky so we're gonna break your ankles".

There are many thought-provoking arguments in favour of embracing all aspects of neurodiversity. This movement has (shamefully literally) taken special needs out of the darkness and makes the world richer by teaching us that people with special needs have a lot to contribute to society, and can make the world a better place.
People who have Autism often argue that to"fix" their Autism is to destroy a part of who they are; that their ability to perceive the world differently is their very strength.
There is a very real danger we are hobbling generations of potential artists, innovators and world leaders by gently battering their differences out of them.

This I get.

But the conflict is that to remain entirely academic about embracing neurodiversity, and to respect Autism by leaving it untouched and uncorrupted, is to condemn our children to remain  fearful, angst-ridden, shit-smearing, violent, vulnerable, malnourished, marginalised human islands.

While some people on the Autism Spectrum can identify, overcome and capitalise on their differences, most can not.
Without Speech Therapy, Occupational Therapy, behavioural education and a shit-hot education, Finian would still be a non-verbal, self-harming, nappy-wearing, mother-beating, sand-eating screaming ball of fury.
Now he is only some of those things, some of the time.
The rest of the time he is a cuddly, funny, energetic, bright, willful, glorious little boy who is loved without measure and lights up the world around him.

Is it not possible to cherish the positive aspects of Autism while working on limiting the traits that make life suck?
Surely this is not disrespectful to the autistic individual, and is actually just what we do as parents, whether raising special needs kids or neurotypical kids.

Throughout my life I have spent many happy hours torturing my sister Mary about being a professional fence-sitter. "Get off the fence and pick a side!" I'd yell while dismembering her Sindy dolls and drawing stubble on her Michael Jackson posters.
Now I'm beginning to see the wisdom of her ability not to be immediately polarized by a given issue and to be able to consider that there are usually many aspects to the same situation., and that none of these points of view are wrong...they are just different.
Not that I'll ever admit this to her, of course.

The hope of a bit of middle ground might be all that is needed to make room for everyone.
And Michael Jackson looked great with stubble.

My sister sitting on the fence.  True story. 

P.S  My oldest son is now in college, partying harder than is strictly necessary, but giving his full attention to a style of education that engages him. 
In your face, fruit flies! 

Sunday, April 5, 2015

Autism and the Good Stuff

Autism is  tough going.
I could fill many, many pages about the way it chews up your life and spits out grief, fear, isolation, exhaustion and depression.

But I have a trick up my sleeve (that sadly doesn't involve alcohol, medication or a one-way ticket to Barbados), that helps me to stand back and see the big picture.
Stand too close to the picture (and we all do, mostly because we're too damn tired to do anything else) and all you see are random, meaningless pixels that give you nothing more than a squint and a headache.
But step back just a little, and watch the dots join into a fabulous, breath-taking portrait.
And no need for eye patches or Panadol.

When I feel weighed down by still spoon-feeding a ten year old, or needing an assistance dog to take him for a walk, I think back to how he was a year ago, five years ago or even just six months ago.

When Finian was four he had no speech.  Now he has enough speech to get his needs met and, most importantly, to ask for his favourite flavour of Doritos.
When he was six he was still in nappies, and was not above getting arty with his own poo on his bedroom walls. Now he rarely has accidents, only pees across the fence when he thinks we're not looking, and hasn't carefully constructed a brown mural in several years.
Six months ago he never checked my face to see if I was paying attention (a skill called 'shared attention' which most babies learn innately), and in the last few weeks I noticed him checking me out to make sure I was watching him point out his Bob the Builder toys. And not just because I was sporting awesome lip gloss.

And these are only three examples.
There are more.

He rarely self-harms now (although he threatens to) but mostly comes to me for a hug and a good complain about how crap it is when you're not allowed eight bags of salt and vinegar crisps.
His "bad nights" (the ones where he wakens at 3am and argues a strong case that this is an excellent time to get up, watch DVDs and have a party) are getting fewer, and often weeks will go by without a visit from our jitterbugging  night owl.

There's even more.
That's the wonderful thing.
There's always more.

It's not that I'm confusing myself with Maria Von Trapp and I imagine I can make my life rosy by sewing curtains-dresses while singing about puppy dogs and snowflakes.
I know Autism sucks.

But when I think like this it helps me feel less scared about the future.

Progress is slow, but there is progress.
Sometimes I just need to take a few steps back to see it.

Sunday, March 1, 2015

Autism and The Wall

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

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

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

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

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

Suddenly, there was hope and the possibility of companionship.

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

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

Wednesday, February 25, 2015

Autism and Depression

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, February 16, 2015

Autism and Team NoSleep

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

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

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

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

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

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

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

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

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

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

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

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