Thursday, February 4, 2016

Autism & The Little Boy in the Big Body


The writing was on the wall several years ago that Finian would one day outgrow his true loves in body, but not in soul.

About 3 years ago I could no longer buy him pyjamas sporting his favourite cartoon characters, as people with clipboards and marketing strategies have decided that all boys from age 8 and upwards prefer having weapons of mass destruction and drooling, flesh-eating  zombies emblazoned across their chests.
(personally I'd feel more comfortable knowing that future of our world is the hands of people who would choose Thomas the Tank Engine over genocidal mania, but sadly this choice is not presented to them)



My sister-in-law Alison suggested using hacksaw in the dead of night to remedy this problem.
Any other ideas that won't end with legal proceedings???



I knew how Brody felt when he realised that they would have trouble squeezing Jaws into a sardine tin.
We are indeed gonna need a bigger boat.

At the ripe old age of 11, I can see that Finian is following in the footsteps of his Dad and his big brother, in that he will block out the light when he enters a room.
He is destined for a future filled with "what's the weather like up there?" and "do you get the bends when you come back down to earth?".
Meanwhile, my older kids enjoy patting me on the head  and asking if they can get me something from the top shelf.
Or the bottom shelf.
 I often wonder why I had them.
What I'm trying to say is that I seem to be rapidly growing towards the ground while my family are shooting past me.

So, Finian's coming-of-age is not so much about facial hair and biceps as it is about the sad absence of Bob the Builder underpants and extra-large pay-and-ride machines.

Luckily, a very kind relation gave me her sewing machine (I owe Cecile something gorgeous as soon as I can actually make something gorgeous), and another lovely friend  salvages cartoon characters from her own little boys' old clothes, in the hope that one day the  inspiration fairy will visit and wave her magic wand all over me.
Making life awesome for an autistic boy really is a team effort.
All I have to do is put all these things together.
Erm, easy...





It's funny how autism has once again kicked me out of my comfort zone and forced me to get creative.
Or at least to try to get creative.
Get arty or die tryin'.


Without Autism, I would be taking my procrastination to my craft-free grave with me.
The fact that I have taken up crochet instead of pouring vodka into my afternoon tea is another example of how getting crafty has saved me from needing a liver transplant.  Or, if you want to look at it another way, how Autism forced my hand to get creative with saving my sanity, as well as trying to light up  Finian's world.
It's funny to think of all the paths I might have left unexplored without Autism, although I think I'll leave building adult-sized pay-and-ride machines to someone else.



















Thursday, January 14, 2016

Autism & Drawing the Soul

Spirituality is an area we rarely venture into with our autistic kids.

In fairness, my energy is usually devoured by keeping my child alive and happy (and wearing clothes, on a good day). Worrying about the sanctity of his soul has taken an easily-overlooked backseat to checking his hands for ominous brown stains or making sure all the doors and windows are locked.
That, and the thousand other soul-sapping jobs a special needs parent does every day.
Soul searching was always something I could deal with another day.

However, an unexpected benefit of coming through  Depression is that it has helped me to become pretty comfortable with developing my own spirituality.
It has evolved into a strangely flavoured  pick n' mix of what works for me, but it can really be distilled down into two workable tenets;
Silencing the mental chatter (a source of much unnecessary pain) and trying to live the  "do onto others as you would like them to do onto you" philosophy.

In a misguided attempt to open Finian up to some of this I took him to mass a few months ago, but he became very upset about the "shepherd" bleeding on the cross.
I briefly wondered if there was any way to explain to an autistic 11 year old that we are evil, sin-riddled creatures, guilty of  causing the unfortunate shepherd to be  tortured and killed to redeem us for our wicked ways.
We went for ice cream instead.
I was going to have to find another way.

I meditate, I pray, I read, I listen and I am able to explore various ideas that help me become a better, more honest person.
I can see that Finian embodies mindfulness by living very much in the moment, but there are times I have felt alien and disconnected from him.  He is more than capable of expressing himself, whether through words, music, his emotional openness, or his physicality.  But there are times he seems to pull the plug and I have am struggling to find ways to connect with him.

Then we had an unexpected leap forward when, of all things,  I won an on-line competition  to have his Soul Drawing done.
Whether it was serendipity or coincidence is a matter of perception, but it couldn't have been better timed.

The artist is a lady from Carrickmacross  (now living in Drogheda) called Breda Marron, and I would encourage you to look at some of her work at https://starlightsouls.com/
This is how she describes a soul drawing;

A story often unfolds with a soul drawing, which can help to explain the journey the person has been going through. The drawing can also highlight a need for change, as well as serve as a celebration of the soul’s resilience and unique energy through the use of colour and symbols. Each soul drawing is accompanied by a letter to the person recording the thoughts and feeling that came through during the drawing.


I had already seen a soul drawing that Breda had done for a dear friend of mine and I was touched by it's beauty and depth.
However, I had no idea what to expect or hope for when it came to doing one for my gorgeous boy.
I sent Breda an item of clothing, aware that all she knew about him was that he was 11 and he was autistic.
A couple of weeks passed and Breda called me to say that Finian's soul drawing was ready and we arranged to meet.  I have to admit that curiosity was getting the better of me and I just couldn't predict what inspiration she might have drawn from my funny, quirky little man.



Our Soul Drawing by 
https://starlightsouls.com/
https://bredamarron.com/




In a world full of cynicism it was pretty damn wonderful to meet Breda.  She is humble and lovely in the way that only people who have a true gift are.  When I unwrapped the picture the overwhelming feeling I had was that it was so right.  It is full of energy, warmth, protection and light.   She works in a  meditative state of mind to allow the free flow of energy and images to come to her, so there is no interference from ego, should-be's or what-if's. 
Her work comes straight from the heart.

Breda found that she had to include me in Finian's Soul Drawing so it became a story of us, instead of him alone.  In a beautiful letter that accompanies the drawing she describes how Finian's purpose is to bring light and energy into the world, and that mine is to ground him and keep him safe.  There's much more in the letter, which is unique to everyone, but it gave me an insight into Finian from a different angle.


I'm slow to process things so it's taking me a while for me to see the various layers and depths to it.
I hang it on the wall opposite the stairs where I sit and wait for a few minutes before Finian's bus takes him home.
This is what I see in it;

It makes me feel calm and centered.
I see Finian as an open, vibrant soul radiating light and energy.
He feels no need to be understood and is joyful to be exactly as he is.
His light touches everything around him.
I am the small, tightly coiled ball on the edges of his energy.  Lots of energy and warmth and protection come from me to surround him, but beside his freedom and intense light I appear almost embryonic.  My core is solid and  filled with potential and concentrated love.
There is more coming to me that I can't find words for yet, but in time they will.

Finian was oblivious to the drawing until a few days ago, when he suddenly seemed to notice it.  He became really animated and excited by it, loving the colours and the movement in it.  He studied it very intently and moved his hands along the lines and swirls.  It was a joy to watch him so engaged with it.












The whole experience makes me feel calmer, less anxious and a little braver.
Having our soul drawing done helped me to see this, and having it hanging on the wall reminds me of it every day.

We need to be creative to tap into our children's spirituality; whether it's through art, music, construction, nature, playfulness or whatever opens your child up.

As ever, I continue to learn from my "disabled" son.





















Saturday, January 9, 2016

Autism & Violence.

I wrote this post a few months ago, but felt too raw and emotional about it to post it.
Now that I've processed it and learned what I can from it, I feel ready to share it and I hope that it might help or touch someone else.


Violence is an unwelcome dark side of  Autism.


This is a really difficult  topic to write about.
I thought long and hard about writing this as I have to expose myself and Finian to judgement, and maybe worse.  I fear people may look at Finian differently and maybe even fear him, when what he needs most is love and compassion.

When Finian attacked me in the car on a cold, wet November night I reacted  like any survivor of domestic abuse.
I was shocked, appalled and most of all I wanted to protect my aggressor.
To anyone who has no experience of domestic abuse, the default position of secrecy may seem surprising but it is rooted in feelings of shame and fear of judgement ("she was asking for it", "she should have seen it coming", "she must have done something to deserve it" etc etc).
As a Special Needs Parent I am constantly questioning myself, and when my child descended into what must be a terrifying storm of pain and anger, I immediately wondered what I had done wrong.

When a person you love and cherish assaults you, it's an assault on much more than your body.
The punches and well-aimed kicks are awful enough, but the horrible knowledge that your beautiful child is trying to unload all this hurt on you wounds to your very soul.


Being battered by your autistic son differs from being attacked by an abusive partner in that our kids are not manipulative, insecure, power-hungry bullies.
Our kids lash out because they are frightened, tired, overwhelmed and at an utter loss at how to express their inner turmoil.

I actually learned from this event, after my shock abated.
Hindsight is a wonderful (if a tad smug) teacher.  A perfect storm had been created which led up to Finian melting down;
He was already tired and cranky.
We had a long drive through narrow roads.
Driving conditions were torturous as it was wet, dark and stormy and we had to keep slowing down, stopping and waiting to allow other cars pass us on the narrow roads.
His favourite CD kept sticking.
We had to wait in a car park full of lovely shiny cars that he was not allowed to touch.

I'm a lot more mindful now of the early signs of a meltdown (with Finian that means being over-excited, physically tense, changeable humour, distractability, extreme sensory seeking, occasionally smearing plus a few more) as well as the conditions that might exacerbate it.
I now have several ways of managing this when I spot it, depending on practicality, including a bath, a shower, using the swing, tight cuddles, running outside.
Sometimes it's just a matter of stopping the clocks and waiting it out. This has led me to crossing my fingers and hoping my friends and family are understanding about my many cancelled dates and early exits, but frankly I don't have a lot of time or energy to worry about this.

It's important for parents of autistic kids to have a bag of tricks ready to deal with potential melt-downs and to prevent violence.
It's important for us to care for ourselves enough so that we are physically and emotionally able to deal with it if it does arise.  Sometimes this means having pizza and chips for dinner instead of cooking a three-course meal (OK, that never happens) so that you can  drink tea/ watch 'The Big Bang'/ read '50 Shades of Shite' for half an hour while you reboot your systems.  (An early night or a walk with the dog makes me feel human again).
Identify whatever little gem reminds you that you're you and use it.

I was lucky that even though Finian has often lashed out at me and self-harmed in the past, that this was (fingers crossed) a single episode of full-on assault.
I was lucky that my grown-up son Jimmy was in the back of the car and had the strength to pin Finian down while I got us home.
I was lucky that I have a lovely husband who could be with me while I cried like a  big old baby later that night.
I'm lucky that I have good friends who get it, and that Finian has a supportive school who help manage these behaviours.

Lots of parents don't have these supports.
When external supports aren't available to us we need a little arsenal of internal coping mechanisms to help us survive the bad times.

Since last November I've become more in-tune with Finian's moods and we've always (so far) been able to calm down any escalation behaviours.  A seminar I attended at his goddamn awesome school about Challenging Behaviour was also very timely.
Violence associated with Autism is one of the most painful, emotionally charged things to have to deal with but progress is possible.
Much love to you all. 












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 wall....it'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.



CHANNELING MY INNER SCARDEY CAT




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.