Stranger Danger

Spring has sprung in County Monaghan, and owing to the grim knowledge that this single day of springly (that's an adjective I found in The  Descriptionally Challenged Autism Mammy's Dictionary) joy may be fashionably short-lived,  we abandoned domestics and exposed ourselves to the elements.

I suppose I could have just said we went outside, but that wouldn't have been as much fun.

Himself (James) indulged in lots of manly man-pottering which seemed to require testosterone, much hacking of hedges and protracted disagreements with the stubborn Monaghan soil.  

Ellen (11) and I were engaged in the much less mucky pursuits of  tea drinking and Deciding What To Wear On A Nice Spring Day.  

Jimmy (the Teenager) was at his Grandad's, while Finian celebrated the clement weather by cleaning the car with his face.  

By the end of the day we had a nice, shiny car and a small boy who resembled a Dickensian street urchin who had his happy laudanum (OK,  Ford Mondeo) fix.

It's fair to say he has a thing about cars.

not my actual child, but a disturbingly close approximation

Ellen and I were watching Finian from  inside the house when a jeep pulled up outside our gate.

Even though there was a locked gate between the driver and my son, nothing as pedestrian as a five foot tall wooden barrier, nailed with extra chicken wire to hamper escape attempts, would come between an autie kid and his passion for all things four-wheel.

I hot-footed it down our avenue, half amused to watch an old  man attempt to glean directions off an autie kid whose only agenda was figuring out how to jack his car. 

Half amused, but mostly terrified that Finian would clear the gate, the chicken wire and the cast-iron bolts in a single bound, catapult himself into the passenger seat and demand that the old man should "DRIVE!".

Which, in absolute terror, he probably would.

But there was no need for me to hurry as Ellen shot past me and was at Finian's side in a heartbeat, with a protective sisterly arm around his shoulders.

All four foot nothing of her.

A child so skinny I sometimes consider weighing her down with breeze blocks in a high wind.

But her Big Sister claws were out and looked well sharpened.

If someone tried to prise Finian from her grip they may emerge minus a limb and a face.

I gave the man directions, and sent him on his merry way, happily oblivious to the narrow escape he had.  

Had Ellen and I not been there, there could to this very day, be a sobbing elderly man driving endlessly around Ireland, helpless to stop against Finian's commands.  

Or if he was an incredibly strange niche child abductor who specialised in autistic children, he would have to pass Ellen first. 

I seriously wouldn't have put money on him winning.

I'd forgotten that, growing up as child #5 in a family of 7,  we could with much contentment (and contemptment...hey, see what I did there???) tear strips off each other.

But dare anyone else threaten us and you'd have a posse of feral children guarding your honour with ferocity.

Human nature is seriously weird, but we will never be in danger of being bored by it.

Dance Like A Butterfly, Sting Like A Bee

Living with a special needs child is like waking up to Muhammad Ali skipping in my bedroom every morning demanding to indulge in a little light sparring while I get the breakfast ready.

Ali I can handle.

I've had five years special (needs) ops training involving Olympian sprints against traffic (so far I've always won, not that I'm bragging........OK, I'm totally bragging) and wondering if I haven't, in some fabulous genetic glitch, given birth to a greyhound/wildebeest crossbreed cleverly secreted inside the skin of a disarmingly gorgeous autistic boy.

I could take Ali with one arm, while the other is mashing Weetabix and making hot chocolate with the correct Bob the Builder spoon.  

Making hot chocolate has become an exercise of surgical precision and requires the careful selection of  appropriate equipment (see spoon above) while implementing a research-based approach (half hot water, half cold milk) and keeping abreast with latest technological advancements (currently two spoons of chocolate powder is in favour).  It's not a straight-forward task.

It's tricky to find a research-based article on the topic, but I think I may be in a position to write one.

It's not the fifteen rounds of intense, sweaty battle that brings me to my knees.

It's the feckin skipping.

It just doesn't stop.

I can handle the tantrums, the dramas and the histrionics of autism and still get the beds made and the ironing done.  Not a curly Irish hair out of place.

It's the low-grade constant demands of autism, the constant background skip, skip, skip of it that splinters  your soul into a dark place where once there was light.

It invades your sleep and creates a permanent white noise that shadows every aspect of your life.

The need for special needs parents to get selfish is vital for survival.

To a special needs parent, being selfish does not mean jetting away on a spa weekend and a giddy shopping trip with a forgiving credit card. 

It means being able to finish a meal, have a shower or ohmygod make an appointment to see a doctor when you're sick.

So while Ali is stinging butterflies with  dancing bees, or whatever he does when he's not boxing, I am learning to harness those moments to look after myself.

I'm getting better at it too.

I'm one of those lucky creatures who has a great marriage and we allow each other me-time to perform manly triathlon-type things (him) or girlie hair appointment/gym bunny/sleeping type activities (me) free from people who are below voting age.

When the kids are at school we go on coffee dates (going out together at night is more stressful than it's worth) and get to enjoy each other's company away from dirty dishes, laundry and anything with the prefix special needs.  We also laugh our arses off that we're still dating after twenty years.

I'm coping with my depression really well by educating myself and giving it attention.  Depression is not a pretty thing to behold, and I remarked to James (Himself) the other day that the pain of it is very much like labour.  It's messy and agonizing and deeply exhausting, but through it something beautiful and compassionate is achievable.  

Ignoring what your body and soul is telling you is dangerous at the best of times, but is horrifyingly close to  pressing your finger on the self-destruct button when you're a special needs parent.  

Ignore your source of pain at your peril.

Bottom line, if you don't look after yourself, you can't look after your family.

When I was a student nurse we indulged in much snickering over being taught to enable patients to express their sexuality.

Expressing sexuality is not about sex (although in some happy events it can lead to it).

It's about reaching into the deepest, most primal part of yourself and expressing it through your clothes, your hair, your make-up.  

When you express your sexuality you are saying to the world "I am here, and I am worth the effort of looking after myself".  

So while Muhammad Ali is skipping in the background I paint my nails, agonise over mascara and go on coffee dates with my husband. 

Butterflies and bees rest in County Monaghan.

(and if I can't ko Ali I could always bludgeon him to death with a metaphor)

Nail Cutting - The Bridge of Death

There are many bridges to cross as an autie family.

There is the fickle Bridge of  Trying Food That Is Not Pureed, which I'm beginning to believe is a hallucinatory side-effect of surviving on caffeine and raspberry jam.  Every time I think I've found it, it seems to sneakily change it's co-ordinates.  

Damn you, raspberry jam.

There is the difficult-to-locate Bridge of Not Bolting From Your Mother In Public While She Is Wearing Heels.  When I try to cross this bridge I can never tell if it is the wind whistling through the floor boards I hear, or the distant sound of mocking laughter. 

My favourite is the Bridge of Continence, which we crossed with the assistance of dogged tenacity, Sherpa Tenzing and the sale of my soul to Beelzebub.  I burned that one as soon as we crossed it because we are never , ever going back.

 But for Finian, the ultimate Bridge of Death has to be toenail cutting

My son was looking less like a 7 year old boy and more like an untrimmed (but surprisingly handsome) mountain goat.

It was fast approaching that time when I had to muster all the able-bodied males in our house to pin him down while I clipped his blades of glory.

You may have gathered, that Finian is less than co-operative when it comes to personal grooming.

I really wanted to approach the toe-nail shearing armed with something other than staple guns, buffalo sedatives and a cattle crush, so my trusty adviser Google was prayed to for enlightenment.

A quick search  showed that Finian is in excellent company.

What is laughingly referred to as issues with nail trimming, goes together with autism like napalm and warfare.

Many excellent ideas were suggested (sensory distraction, involvement in the process, rewarding), attempted and discarded.

The distraction thing categorically  Did Not Work.

I tried promising him "cut toe nails first, then coke" (just about his favourite thing on earth) and what killed me is that he really tried.  He repeated what I said, he made eye contact and inched his toes towards me...only to snatch them away at the last second.   It was just to awful for him to bear.

Temple Grandin said that even though most of us don't find nail cutting painful, that the autisitc person may perceive it that way.

But short of access to an anaesthetist and some propofol, we had to once again resort to muscle (us) and screaming (him).
I wish evolution would catch up with autism with the proviso that if you have autism, you also get pretty, self-manicuring nails.
It only seems fair.

The Voice

This past few months I've been working hard at taking Finian to the shopping centre by myself...
...as in, without James, my 6ft tall triathlete husband who can handle the physicality of Finian's tantrums with ease.
It makes me feel tremendously secure to know that, in the event of a melt-down, James can hold him and calm him, while I get to stare killer death-rays at anyone who dares to tut-tut at what they no doubt see as a spoiled screaming brat.
Also, staring death-rays does not require me to break a sweat and smooths out my wrinkles, which is always a plus.

But I need to get better at taking Finian out on my own, as naturally James can't be there every time we need a pint of milk.

Going out with Finian by myself are real Feel The Fear And Do It Anyway trips.
I am a wobbly (literally as well as metaphorically), vertically challenged Mrs Punyverse who finds it hard to strong-arm the laundry into the washing machine, never mind subdue a thrashing seven year old who JUST WANTS TO PLAY WITH THE TRAFFIC GODDAMMIT!!!!!

Trips to the shopping centre can be horribly distressing to an autie kid as they can get overpowered by the the constant sensory assaults of lights, sounds, smells and the sense of frantically rushing people.
Over the years he has gradually become desensitized to them, but sometimes he still gets overwhelmed and flips out.

Our Occupational and Speech Therapists advised me to plan short trips and to work to an agenda with a concrete beginning, middle and end.
This aims to give the autistic person a sense of certainty in an unpredictable world.
Because his reading is so good, I write a short list of 3 or 4 places we will visit in each trip, and so far he has felt secure enough with this to cope pretty well.

But going to the shopping centre armed with a scrap of paper instead of a muscle-bound husband feels like bungee jumping off a bridge and halfway down thinking "oops!  I seem to have forgotten the rope."


On a recent quaking visit to the shops, Finian attempted to shoplift a packet of crisps while I paid at the checkout.
I was a bit annoyed as I thought son, if you're gonna shoplift, go for rubies or diamonds...not feckin Taytos  and I made my apologies to the checkout lady, explaining that he has special needs.

And all of a sudden she adopted The Voice.
You know the one, where people talk VERY...SLOWLY...AND...VERY...LOUDLY... to your child, while you smile back through gritted teeth and wonder would anyone mind awfully if you furnished her with a pair of concrete boots and gave her a short shove from a tall pier.

The rest of that shopping trip went as smooth as butter, and I even managed to calm my murderous thoughts with a cappuccino, while the very well behaved Finian had a coke and chips.

It's always a good day when there is coffee and no homicides.

Full-Time Mum...Part-Time Dragon Slayer

My kids sometimes refer to a time in my life, back in the stone age, when I used to be a nurse.

Sometimes my daughter Ellen will frown like she is working out a particularly intractable puzzle and say "didn't you used to be a nurse?" like the notion is so alien that she may as well ask if I used to breathe fire and have scaly skin (although some days that part is true).

"Hey lady, I TOLD you I was pissed off!"

By the time Finian (my third child) was born, it became increasingly difficult to cope with being pulled in forty directions at the same time.
Remember Britney Spears singing "Do You Want A Piece Of Me"?  Well that could have been me.
Except for the blonde hair.
And the abs.
And the whole looking-like-Britney thing.
But I can belt out that song in the car like a cat in a bag (being ever careful to protect the ears of the public by only doing so behind sound-proof glass.  I was a nurse, remember).

So I surprised myself by deciding to become a full-time mum without feeling the need to gouge my own eyes out and eat my own hair.

Over the last few years I've found that being a full time mum is like belonging to an unregulated sub-culture that has no policies, time-tables or career pathays to define it.
This threw me a bit, as in nursing there are policies for everything, from hand-washing to bum-wiping.  It was a bit disconcerting to have to navigate through life's chaos with the feral creatures that are my children, without the comfort of a rule book.
While I haven't devolved into a  child-eating zombie who forages in bins and  wears her husband's clothes, I have to make a huge effort not to.  Somedays I even look quite nice and can manage to trick people into believing that I know what I'm doing (the fools!!!).
It can be head-wrecking and frustrating trying to figure out which direction to go in, and learning to throw away the procedures manual and trust my instinct has been the most difficult transition of all.

But I get to make (and break) my own rules as I go along, and I can take as many tea-breaks as I like without upsetting the union.

Being a full-time mum has surprised me by being  rewarding, enriching and really good fun.
I get to wipe away tears, slay dragons and have the most delicious cuddles on the sofa watching Bob the Builder.

Plus I get to sleep with the staff, which was never encouraged when I worked in a hospital.

Psychosis is this season's Autism

There's a lot of great stuff written on autism, but it can be tricky to tip-toe past the loopy (but hugely entertaining) books with shouty titles like "I Kicked Autism's Arse And I'm Not At All In Denial" or "My Child Caught Autism From A Toilet Seat".

An excellent trick to save time is to avoid autism books with animals on the cover.
Also, if the title includes the words "cure", "vaccines" or "alien abduction" they're generally only good for use as a door-stopper (if they're thick enough).


Simon Baron-Cohen was one of my favourite writers on the subject of autism.
I could always rely on him as a voice of reason in the crazy swirl of autism literature.
But now he's gone as mad as the rest of them.

He recently wrote a book called the "Science of Evil" in which he explains that committing evil acts arises from a lack of empathy (can ya see where this is going?) and that human cruelty has a scientific basis.
He compares autism to psychosis.
I can't claim to have read the book, because he lost me when he tries to redeem autistic people by applying some strange positive/negative empathy scale to their acts of cruelty...including an example where an autistic person punches a baby to stop him crying.  But that's alright because he had positive zero empathy.  Or something.
Try telling that to the baby's mother.

But the bottom line is that most people will read the blurb at the back of the book and conclude that people with autism are psychopaths.
If anyone other than Baron-Cohen had written it, I'd have a good laugh about it.

But I'll be too busy buying some fava beans and a nice chianti with my little psycho to worry about it.
Have the lambs stopped screaming yet???

I've Created A Monster. Whoops.

I feel a little God-like this morning, owing to the fact that I have created a being in my own image.
Let's ignore that this creature is a master-manipulator and genius executioner of cunning plans.
Allow me to bask in my divinity for a few moments.

That was nice.

Now for an uncomfortable bump back to reality.

Finian is using my autistic stealth bombs against me.
Phrases about worms turning and the servant becoming the master are bitch-slapping me around the head  with gleeful wickedness.
It's no way to treat a small god.

I was in the process of getting my Imp of the Devil  a healthy boring breakfast when he used my "first ....., and then...." shtick on ME.
Except his was "first hot chocolate, then chocolate toast" (you seeing a common theme here??).
What the...???

Frankenstein has nothing on me.
He just cobbled together a lumbering jigsaw of mismatched body parts (I suspect the same blueprint has been used to create many of us) who suffered from poor dental hygiene and parental separation anxiety.
Finian has no such problems.
I think my work here is done.