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.











Wednesday, August 28, 2013

Autism Schmautism

It's been a while.

I won't make excuses...oh feck it, I'll totally make excuses.

I spent the past few months doing the whole SuperMammy thing (wearing my pants on the outside and everything), surviving the summer "holidays"  and deciding I was cured of Depression and stopping my anti-depressants (now that was a horror show, and I got to star as Freddie Kruger with lip gloss).


"oh feck...my cellulite totally shows in these pants"


On the excellent side (deep breath)...
...following my mental crash and burn, I got my meds sorted and am now passably sane.
My baby brother and his gorgeous missus had their second son.
I went to the wedding of the decade when my beautiful cousin Ann tied the knot, and I met a small army of cousins I want to take home and adopt  (except some of them were a bit bold  and may be troublesome).
We went on our first family holiday in seven years and had a blast.
I did a course of Cognitive Behavioural Therapy, which was a bit of a head wreck but was ultimately a positive thing.  While CBT is not everyone's steaming cup of psychobabble, its worth a lash and helped me to view the world a little differently.
Finian was offered a place in Abacas (after a short wait of 6 years), which is a school dedicated entirely to Autism and behavioural issues.  The day we got the news, we were like a collective family of Archimedes leaping out of the bath yelling "Eureka!!!" (disturbing image...maybe I should edit this).
I read chicklit til my brain dribbled out of my ears and I loved it.
I spent six months knitting one scarf, but it turned out great.
My daughter finished primary school, and my oldest son grew taller than his Dad.
In the middle of it all, my husband appears not to have left me to run screaming to the peace of a Tibetan  monastery (what is wrong with him???).

In the interim, Autism kinda took a back seat.
When did that happen?
Is it possible that Autism is finally becoming our new normal, and that any day now I can start writing it without a capital A?
That holidays and weddings and new babies are nudging their way forward on my list of priorities and are catching up with it?

In my time of inattention, it seems to me that Autism has become a little mainstream.
More often, I notice that when I mention that my son is autistic, people no longer smile politely and say "so he's good at drawing" and I say "no...not artistic...autistic...oh, never mind..."
People know what it is.  Or at least, have heard of it, and don't assume that your child is a spoiled, super-sized  brat.
While this can only be a good thing, it's in danger of becoming this years shih-tzu in a Prada bag.
Maybe next season, Hollywood celebs will be queuing up for an autistic kid along with their Manolo Blahniks.


"These cows are close...those ones are far away"



It's all a matter of perspective.

Monday, April 8, 2013

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?





Saturday, March 23, 2013

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.