Thursday, September 25, 2014

Science, Art... or Tigger?

I have a confession to make.
I can't explain what Autism is.
I've only been swimming in a sea of special needs for close on 10 years now, so it would be reasonable to assume that I know what I'm dealing with at this stage.

Except for the small matter of not having a clue.

I'd prefer to to have a lash at translating the Dead Sea Scrolls from Aramaic into Klingon.
I'd sooner teach quantum physics to preschoolers using crayons and play dough.
I'd rather grow a beard (not so difficult actually, now that I'm peri-menopausal) and explain the plot of Ulysses to earnest, flea-bitten students.
Are you feeling my vibe that I'd rather not do it???

About 8 years ago I became very familiar with the Triad of Impairments, which describes impairments in imagination, social relationships and communication as the three-legged-stool upon which Autism drunkenly wobbles.
It appeared in every article I googled and formed the basis of Finian's eventual diagnosis.
I don't usually have a graphic of the Triad of Impairments handy in my make-up bag, but just in case you're feeling a little curious, here's the very thing.



for your viewing...erm...pleasure

Succinct, isn't it?

And despite all the jargon, I still can't find my son in the tangle of "impairments" and "lack of"s.

Describing him as a list of impairments is just wrong, on all levels.
I understand that professionals need to tick boxes to get a handle on a child they don't yet know, but whipping out a copy of the Triad of Impairments when my friends asks why Finian can read car registrations in Irish, but can't tell you he feels hungry, does nothing to answer their questions.

So, over the years, I've attempted to formulate my own definition of Autism.

I'm suspicious that if Finian's lower legs were x-rayed that they'd discover he has tightly coiled springs where his tibia and fibula should be, so for a while I described Autism as a condition where you have difficulty with self-regulation.
But after a while I felt like I was describing a constipated grasshopper, so I dropped that one and went back to the drawing board.

Finian's sensory processing disorder is a very obvious aspect of his Autism to observe, so for  a while I used this as the donkey to pin the descriptive tail to.
I would say "he strips off because he perceives his clothes as uncomfortable, or even painful"  or "he can't eat fruit because the texture makes him gag".
But as time went on I thought, maybe he just doesn't like fruit and maybe jocks from Pennys scratch like medieval hair-shirts.
And not liking Friday Night Eighties being played too loudly on the car radio is not so much a sensory processing disorder as an expression of excellent taste.
You don't have to be autistic to know that some things are just crap.
So I dropped that one as a handy sound-bite to explain away my child's behaviour.



I have particular trouble when my young nieces and nephews ask "why is Finian jitterbugging like a 70's disco-ball on acid?"

I can't really refer  a four year old to a dusty tome about developmental delays,  so I usually respond with something like "erm...he's extra bouncy...like Tigger".  

Surprisingly, they buy this.
But maybe it's not so surprising.
Adults tend to over-complicate things, and it's possible that Autism isn't really that complicated at all.



Maybe I have been blessed with an exuberant cacophony of  energy, light and sound that no medical book has yet been able to pin down.
I'm beginning to see that it's artists, and not scientists, who will eventually perfectly capture the essence of Autism.
Or maybe a four year old niece will get there before them.












Wednesday, September 3, 2014

Stop the Press; Autism Does Not Exist

On my last blog post I got a comment from "Anonymous"  (who seems to get around a bit...he courts a bit of controversy and then vanishes like a badly edited super-hero) stating that.....drumroll.... Autism does not exist.




Hurray!

I can't wait to sit my son down (when he stops bouncing off the walls for a few minutes) to inform him that we made a huge mistake and that he is now Normal.

Phew!
It seems he has just been very naughty for the last 10 years.

It'll be lovely to call the Minister for Education and tell him that he can close down all the autism units and  the ABA schools with immediate effect owing to a silly error (oops!).  He can tell all the caring, if misguided, Special Needs Assistants that they can take a protracted sabbatical to the dole queue.  Or enlist them to a couple of years of military service to knock them out of their softie ways.
Imagine the relief Finian's Speech Therapist and Occupational Therapist will feel at being able to remove all the so-called"autistic" kids from their lists and start treating kids with real problems! I will be so happy to be the one to tell them.
I expect there will a bit of face-palming and embarrassed laughter over making such a glaring mistake, but hey, we all screw up from time to time and now we can learn and  move on.

So, in preparation of pronouncing Finian non-autistic, I have made a list of things he needs to take on board to ease the transition into Normality (not that he ever left it of course, as Autism doesn't exist);





(1) There is no longer any need for you  to run out in front of traffic or leap out of a moving car as you are now Cured. Your Autism is no longer an excuse for being a  Duke of Hazard junior.
(2) You can begin to use the Queen's English from now on as your language processing difficulties no longer exist (and never existed in the first place! One will be so embarrassed if one runs into one's Speech Therapist in Tesco).
(3) Self-harming is just silly now that you don't get overwhelmed by sensory overload.  Just stop it already.
(4) There is no excuse for sloppy social etiquette, so handing people pieces of poo, no matter how thoughtfully considered, is no longer acceptable.
(5) Your over-reliance on Bob the Builder can now be replaced with something more age-appropriate... like Grand Theft Auto.  It's about time you started ignoring me in favour of violent, misogynistic games.  You are 10, after all. 
(6) You no longer require your iPad to use as an educational tool and for relief from overpowering external stimuli.  I will now relieve you of  it to play Angry Birds.
(7) From here on you will enjoy a broad, wholesome diet consisting of more than weetabix, nutella and mashed potato.  And I will learn to cook.  Damn. I may delete this one.
(8) The requirement for melatonin-induced sleep is now lifted and you can spare us your nocturnal renditions of nursery rhymes.  Apparently, now that you are an autism free zone,  the Wheels on the Bus no longer need to go around and around all night long.  Just saying.


So thanks for that, Anonymous.
I will laminate this list and hand it to my son, as he may not have heard me over the loop of YouTube clips he devours about how the locking mechanism in elevators are engineered  (all the kids are watching that these days).

After I remove all the industrial-strength locks from our windows, doors and gates, I'm off to burn all those nonsensical books about Autism that are clogging up my bookshelves.
Later, Normies!




Sunday, August 24, 2014

Love Hurts

It's quite an experience to feel polarized emotions towards the same person in the same instant.

I have a gorgeous little boy who cuddles me with every ounce of his high-octane love, while raking tattoos into my shins with the sabres that seem to have replaced his toenails.

He disarms me with his open grin while lobbing my Waterford Crystal off the top of a bookshelf
(crystal explodes, by the way).

He liberates my rabidly protective Momma Bear while depriving me of sleep and a social life.






In the same moment I want to scream white-hot rage while shielding him from every sling and arrow life can hurl at him.

Whoever said "love hurts" was writing more than a cliché.

Monday, March 3, 2014

Autism and Shoes

There is a well known metaphor about not judging the troubles of others until you walk a mile in their shoes.
There is a fair amount of justifiable bitterness among special need  parents when they are subjected to the cold eye of judgement from people who are "experts" from a very safe distance.
We have all had the tuts and the stares and, worst of all, the advice from armchair experts ("he just needs a firm hand" is one of my favourites, both implying that Finian is spoiled and that I'm an ineffective parent. That's a lot of poison in such a short sentence).
If you're a normie giving advice to a special needs parent, you're  like a Dutch person giving Algebra lessons in Japanese.
Don't fucking do it.

Which led me, obviously, to think about shoes.

Often, when a special needs person has been hurt by someone they'll wail "I wish she/he could walk in my shoes for a day".
It' s a natural reaction, but I have a problem with this.
I really hate my shoes.



try walking a mile in these mothers


I really don't have to heart to inflict my pain on someone else, no matter how frustrating they are (I use the word frustrating reservedly...feel free to replace it with a personal favourite).
People who are not special needs parents are intrinsically unable to know how every atom of our our lives have been whacked so far out of field that they have left the comforting gravitational field of planet earth and are careering madly into uncharted space.
How could they know?
It's unfair that they would assume to be knowledgeable enough about autism and the chaos of our lives to offer advice and cast a cocked eyebrow over the state of our homes and our hair.
But it's also unfair to wish them to feel the same pain as us.

Reacting to pain by inflicting pain, just creates... more pain.
None of it is good.

It's hard to be so Zen like when you're surviving on 4 hours sleep a night and you're nerves are stretched to breaking point with caffeine and  a permanent loop of Bob the Builder (in Swedish).
But it's just not in me to wish this on anyone.
Ignorance can be corrected, but pain and nastiness takes longer to heal and can burrow deeper and deeper if left unchecked.  The cycle has to stop somewhere.

I just love an over-cooked metaphor, so I'm unapologetically throwing it out there that I need to get a lot more comfortable in my own shoes, before I even consider inviting someone else to squeeze their verruca-ridden bunions into them.
I'm hard on myself in that I still strive to be like "normal" parents.
I feel shame when my nails are split and my roots are grey.  I need to replace this with compassion for the mother who doesn't have the time to sit in the salon, or the energy to paint her nails.
Not pity...compassion.

Crocs are calling my name...







Tuesday, February 11, 2014

We Are All Stars (...no, really)

I've been getting into Astronomy lately.
And not just because Brian Cox is as easy on the eye as he is on the ear.
Honest.


for your viewing pleasure


If you ever want to feel the rush of a "WOW" moment, think on the fact that we are all made of stardust.
Real stardust.
From stars.
The ones in the sky that twinkle.

We weren't bought to order from an Argos catalogue, or copied from a blueprint in the Baby Factory.
Every atom in your body was once created in a star.
Billions (and billions, and billions) of years ago all the atoms that exist in the universe were forged together in dying stars, when incredible pressure forced hydrogen atoms to join together in progressively heavier and heavier elements, producing iron, zinc, magnesium and all the elements we are familiar with.
The elements that make our kidneys and our furniture and our cars were born in a cosmic nuclear reactor.
A collapsing star is your love daddy.









Thankfully, geek is the new chic, because this is all ridiculously cool and helps me to see that in the vastness of time and space, we are all composed of the same stardust.
Essentially we are all each other and are all the same (although this is something I would expect to hear in a hippy commune and not figure out from an Astronomy book).
Our atoms will combine and scatter over and over again at some cosmic whim.

So how come, I'm still worried about the state of my nails?
Or why I can never get to the bottom of the laundry basket?
And if my son's autism will become manageable so that he can live safely and happily after my own atoms have disassembled and pottered off to do their own thing?

Surely these "small" things should diminish in importance faced with the knowledge that we are tiny clusters of cells in a giant ocean of space.

It doesn't seem to work like that though.
Maybe it's human arrogance exaggerating our own importance....or maybe all these worries really are important.

I hope Brian Cox will produce a series on this soon.  If only to admire his lovely hair.






Friday, January 10, 2014

Mass is Mars, Only Spelled Wrong

If ever feel the urge to road-test your anti-depressants (and your antiperspirant, come to that) step outside the safe confines of your house, where WiFi and Bob the Builder in Czech are stitched together in a cosy autistic comfort blanket, to feel the real bite of fear.

Releasing an autie parent into the wild is a tense affair.
There are jangling nerves, sweaty palms and the paralysing fear of having forgotten how to converse with a normie.
I mean, is it OK to chat to a stranger about the weather after your child has just pooed up the walls?
All rules are moot when you have an autistic child, and parents can become as uncertain of social etiqutte as their children.


I think I might have created a new niche for myself by becoming a lapsed atheist.
Damn that Pope Francis and his meddlesome Christianity.
Who would ever have dreamt we'd see a Pope leading by example? Over the last few years I've experienced enough to make me question my very comfortable atheism.  I can't quite put it into words, but my feet seem to be dragging me back to mass.  Strike me dead with a Jesus shaped bolt of lightening, but I like it.
I don't buy into the Catholic shtick wholesale, but going to mass is helping me keep in touch with my soul and my direction, as well as reminding me of the inherent goodness in people.  It also helps that we now have a Pope who washes the feet of criminals and spends his birthday having breakfast with the homeless.  He wears open-toed sandles instead of €800 silk shoes and takes the bus instead of a chauffeur driven Merc.
Leading from the front is a quiet revolution in a Vatican that spent centuries beating us from behind (sometimes literally) with spiritual terrorism.

So most Sunday mornings I leave Himself and the ankle-biters at home and enjoy a quiet hour of stillness.
Or at least I used to.
Until Finian decided he wanted to come with me.

Yikes.

Taking an autistic child outside his comfort zone is like climbing into a rusty bin and asking a pal to wedge the lid on and catapult you in the rough direction of your destination (although anyone who's flown with Ryanair will already be familiar with this experience).
Complicate this by going  to mass and it's like taking a really deep breath and asking your pal to get lots of help with that catapult,  because you're going to Mars.

"yep, I think the church is that way"

So my gorgeous little boy was standing in front of me saying "go with Mammy" and fixing me with his lovely blue eyes.
I was helpless to resist, but I had a few things to consider.

I thought about how his beautiful little voice would echo around the high walls as he sang his favourite line from the Family Guy song.... "and sex on TV".  I wondered would 200 Catholics be able to appreciate the fact that my boy can speak at all, and ignore the words of his interesting, if potty-mouthed, hymns.
I wondered would be get really upset about the wrongness of leaving the tabernacle door open and bolt up onto the altar to close it.
I wondered if my neighbours would  avoid my snorting, oddly moving boy and feel irritated at his inability to keep silent.

There was only one way to find out.

So we climbed into our rusty bin (OK, it was our 10 year old Ford Mondeo) and were catapulted over to mass.
We were almost astronauts as it was only one consonant away from Mars.

He stimmed, sat, stood, wriggled, sang, grunted, waved, clapped, picked his nose, lay down, hugged me and drove his digger up and down our seat while brmmmmmming happily.
I don't know if I was inspired by God or the Devil, but a calmness came over me and I felt that if this was the worst he could do, then all was good.  No one ever died because a child whooped along to the choir.
And funnily enough, the gospel was about acceptance, so maybe God does have a sense of humour after all.


mass is at twelve o' clock every Sunday




We managed about half of it before Finian announced loudly that he had to pee NOW, so it was time to go.

We've been  a few times together since then, and the nice thing is that when he chooses to stay at home, my neighbours ask about him.
I guess he makes an impression.

And now an Irish man is queuing up to buy a one way ticket to Mars, only he's hoping to get there in a rocket and not in a rusty old Mondeo.
But I gotta tell you Dr Joe Roche, going to Mars is a piece of piss.  Try going to mass with an autistic kid.







Monday, September 23, 2013

Perception

Finian has performed a typically autistic staccato developmental leap...he has been coasting along in his
comfortably smooth, dream-like way when BOOM!  he suddenly started sleeping by himself  (because he's a "big boy") and blind-siding us with spontaneous sentences that don't have to be extracted from him with a set of pliers and a foot planted on his chest.

Autism will never fail to surprise me, thankfully sometimes in a good way.

James and I have had to take it in turns to sleep beside him since he was a baby.
We were lucky if he slept by midnight, and inevitably we'd drop off beside him too.
We became experts at communicating efficiently over the heads of rowdy children and sandwiching quick chats  in between over-stretched schedules.
Amazingly, we still managed to remember each other's names and have been blessed enough to avoid the marital problems that so many of our friends have experienced.

Then we went on holiday to Donegal in August.
It was our first family holiday since Finian was a baby and we were prepared for it to go either way. Luckily it was a huge success.
Finian's bedroom was beside the living room and he was happy to hit the hay knowing we were only a few feet away.
The fact that he was banjaxed (one of his favourite words) from busy days surfing through the Atlantic Ocean and ploughing up sand dunes also worked in our favour.
And with that, in the space of one week, our bedtime barnacle was sleeping on his own.

Suddenly nine years of  evenings spent apart from my husband were over.
Now we toast our feet at the fire and say "don't I know you from somewhere?" to each other while our three kids sleep upstairs.
Sometimes we waken in the morning without feeling like we've been battered by a cranky warthog all night.
Sometimes, now get this,  we don't feel tired.





It's kinda weird.

Finian has also been surprising us with the odd spontaneous sentence.
Normally, speech is only drawn out of him when he really, really, really wants something.
In the past few months he has instructed his Daddy to "stop messing" (quite right too) among other sound bytes all associated with playfulness and giddiness.
He thinks it's hilarious to switch off the bathroom light (which is cleverly located outside the bathroom...for the love of God WHY???) while you're using it.  It is hilarious as long as it's not you who's spray painting the floor and tripping over your own knickers.
His sense of humour is evolving all the time, and they say Autistic people don't get jokes.

Finian changed schools in September and now attends Abacas in Drogheda.
It nearly broke our hearts to leave his previous placement at Loughmourne NS, but Abacas educate with a very strong emphasis on behavioural issues, and he can stay there until he's 18.  The worry about where he would be educated after primary level was keeping us up at night so it's a huge relief that he both got the place and that he has settled in brilliantly at it.

So all this great, positive stuff has been going on.

Then I took Finian to a rare Speech Therapy review, where we spent half an hour with a gorgeous girl who did all the tests in a kind and patient manner.
But as we walked to the car I felt like my good bubble had been pricked with a giant pin of What-The-Fuck-Planet-Are-You-Living-On (this pin exists, OK?).
I couldn't understand why I was suddenly overwhelmed with sadness and loss of hope, and why I was glad I didn't have to speak to anyone for the next few hours as opening my mouth would have released a flood of snot and tears (I've told you before, I'm not a pretty crier).




It took me a quiet half an hour in Mc Donalds with my boy to see that the Speech Therapist viewed my son, however kindly, as a set of deficits that needed to be fixed.
I'm not criticising her.  She did her job well and I'm very glad Finian has the chance to see her.
It's just that, for those few hours, I briefly saw my son through other people's eyes.

I see him as Finian.
Funny, stubborn, loving, wild.
Occasional streaker with a fondness for wearing his sister's clothes.
Chewer of coal and bouncer of beds.
Champion navigator the world wide web.
Lover of words but avioder of using them.


School (both current and previous) and our holiday have given us a sense of acceptance and our own brand of normality.
They work to his strengths and seem to use them to lessen his weaknesses.
We never get the sense that he is somehow broken.

I left that appointment with the reminder that most of the world do not see him with such clarity.

Their loss.

With Autism, the surprises come thick and fast.
Some are great, but some of them really leave a bruise.