Autism & Remembering

So, bear with me on this one.

Sometimes I forget that Finian has Autism.

He just kinda bops along, doing his Finian thing, until he does something so ridiculously autistic that it makes my eyes water.

I changed his bedclothes this morning, which seemed like an excellent idea at the time.  I was all aglow (real word) with smug mammy housekeeping vibes.  I washed floors.  I hung clothes out.  I hoovered ridiculous places like underneath sofa cushions. This lasted at least until lunchtime, when I got fed up of it.  Then I thought "fuck this for a bunch of bananas".  So I made tea, read books and abandoned the laundry to the mercies of the elements.  If the sheets survived on the clothesline, good luck to them.

All was grand til bedtime.

Finian went upstairs, supposedly to bed, but instead performed a convincing imitation of a herd of coked up wildebeest.  

Ngl, I was getting annoyed on a coupla counts; first, wildebeest are not native to County Monaghan ...... second, I was trying to watch my fantasy dad Stephen Fry on QI.  Stephen Fry doing QI is balm to my soul.  He could read me a bedtime story, convince me that everything is OK, and I'd sleep with the depth of an innocent.  The wildebeest thing was wrecking the vibe.

Then a Bad Mammy truth bomb reminded me that I'm the middle aged mother of an autistic young man.  

It was The Fucking Sheets.  

I'd put sheets on Finian's bed, but they weren't the right sheets.  

I muted my fantasy dad Stephen, went barefoot out into the dark, took the correct sheets off the clothes line, tumble dried them and replaced them on Finian's bed.

The correct sheets are not just important.  Sleep will not happen without them.

I love a bitta crazy, but I'd prefer it at a time other than 10pm on a Friday night.

Autism isn't just trippin'.  It's faceplanting into anything close to restful.

my son at bedtime

Autism & Insanity

I knew it was bad when I walked past a letter box and  it spoke to me.

Tbf, it had a big mouth, but it was a persuasive sign that sleep deprivation had got the better of me.  Maybe it had lots of clever things to say.  Who knows?  But at that point I knew my sanity was clinging to the edge of  Alice's rabbit hole by it's fingernails.  It was time to throw in the towel and day-sleep, no matter what the sleep hygienists say.  It was either that, or in an hour I might be sitting naked in the main street of Castleblayney having earnest conversations with a skip.  

No-one wants that.

Let me explain, by taking you back to the previous night.

I'm kinda tired so I go to bed early with my book.  My husband follows soon after.  He perplexes me by immediately lapsing into oblivion.  I wonder if I'm married to a lizard person.  In fairness, though, he's nice and cuddly so I soon get over my sleep envy.  After an hour of dancing my usual insomniac hornpipe around the bed, I doze off. 

I waken with a start sometime after midnight.  Am unsure what I heard, but I heard something.  I decide if I ignore it, it might go away.

It doesn't.

I hear the definite thud of feet hitting the floor.  Finian's feet.  

I have a complicated relationship with my son's feet.  I mean, I love them because they belong to my son.  But I also want to wrap them in (sound-proof) bubble wrap and express courier them far, far away.  Like, neighbouring galaxy far-away.  Finian has the loudest fucking feet in the known universe.  His feet and the floor are like tectonic plates colliding, creating seismic ruptures I can feel in my chest.  His feet intimidate earthquakes.  They wouldn't dare rival Finian's feet by erupting in County Monaghan. 

But as long as he stays in his room, I can cope with that.

Years ago we reached an unsatisfactory compromise about Finian's insomnia, and his need to pace (using said giant feet) around the house in the wee hours.  We spent actual years trying to implement behaviour support plans around sleep hygiene.  My husband and I took turns sitting outside his room as he screamed, smeared and self-harmed, doggedly hoping that one night it would actually work.

It didn't.

Eventually we decided that we quite liked being married, so we gave him back his gadgets with the condition that he stay in his room.  

That was all very well.  For a while.

Then he morphed into a teenager who graciously accepted our boundaries, and proceeded to stretch, melt, angle-grind, atomise and blow-torch them into a shape he found agreeable.  It's reassuring that he's reaching developmental milestones, but if he was a little less Stalinist about it, that'd be great.

So I allow myself to drift back to dreamland.  He can be as Stalinist as he likes in his own bedroom.

I bolt awake.  A face hovers inches from mine.  I stifle a scream.  But it's just Finian's face.

"The sheet is broken"

The sheet is not broken.  

A corner of his sheet needs to be replaced over the corner of the mattress.  I do this. 

"Stay in your room" I remind him.

"Hot chocolate" he says.

"No"

"Can I have hot chocolate please mammy Jean?"

"No"

Excellent use of pronouns combined with shameless begging do not move me at 3am.

I go back to sleep.

I jolt awake.  Was that a creak on the stairs?  Can't be sure.  I employ denial, my favourite defense mechanism.  I am almost back to sleep.  The TV blares on.  I am sceptical that a burglar would pause to watch a bit of Fireman Sam in Hungarian while relieving us of our valuables.  I chase Finian back to bed.  I warn him that I'll take his gadgets off him if he leaves his room.

I go back to bed.  He starts to sing.  I consider starting to sing too.  Instead, I make tea and play candy crush.  To give him his due, he doesn't leave his room.  He knows the consequences.  But this is his teenage version of a dirty protest.  He has mastered the art of passive aggression with honours.  I am almost proud.

As morning draws near I give my husband a loving kick in the middle of his back, so that he gets up with Finian while I go back to sleep (this is our arrangement, although James isn't too keen on the kicking part).

I fall into a dreamless sleep, and later enjoy a breakfast of coffee and pringles.  I regret nothing.  

I suppose the mystery of sanity is that you don't really know when you lose it.  Maybe that'd be a fun place to be.

Autism & Autonomy

Finian was supposed to go to Youth Club this morning.  He hasn't been for a few weeks and was really looking forward to it.

But this morning he was glued to his bed.

The shoulder of a reinforced crowbar wasn't enough to disengage him from his duvet.

The lure of a spin to Drogheda wasn't sweet enough to entice him from the arms of slumber.

Even the promise of hot chocolate failed to cut through the layers of indolence.

He gave the conscious world a Hard No.

For a few minutes I cajoled, threatened and bargained.  Nothing.  I tossed my self-respect in the bin, and begged.  Silence.  I considered bringing out the big guns and crying.

Then I caught sight of myself from the third person.  I saw the absurdity of trying to force a tired young man to attend a club when he'd clearly rather rather sleep.  It's his choice to spend his down time as he choses.

Stepping back from making choices for our special needs kids is a tricky two-step.  We spend so much time advocating for them that making decisions on their behalf becomes second nature.  It's easy to mindlessly impose our choices on them, no matter how unwelcome.

Special needs kids already have little enough autonomy, without us devouring the scraps that remain.  Even when well intentioned, it's not cool.

So I let him sleep.

Autism & Bed Hopping

What a weird start to the day.

My husband is away for a few days, so I have what feels like a huge king-sized bed to myself.  Without James, it feels like trying to sleep in a ten acre field with no ditches.

I have legitimate worries.

I mean, what if I roll over the mattress edge and tumble endlessly into oblivion?  Everyone knows that physics changes after sunset and the floor either turns into lava or an eternal, gaping abyss (which maybe explains why Cheerful Nietzsche kept banging on about them.  What a weirdo).

What if the monsters who live under my bed sense James's absence and don't obediently stay where they belong? What if they spread me on a cracker and enjoy a delicious Jean snack while carelessly spreading crumbs all over my freshly laundered sheets?  

Ngl, it's the sheets thing that annoys me most in this scenario.

Anyway, last night I harnessed all my Big Girl coping mechanisms to manage my concerns.

I took myself off for an early night with my new book, and was asleep by 10pm.  Yanno, like a human.

Then the party started.

I woke, startled, at midnight because I wasn't used to falling asleep like a normal person.  My limbic system decided that sleeping was a trap and screamed at me not to do it.  Ever.

But I must have dozed, because at around 2am my fun nightly routine of chasing Finian back to his own bed began.  It's like playing ping-pong in the dark with a giant, cuddly steam-roller.  

Also, that kid gives zero fucks about lava or monsters.  Autism gives him superpowers like that.

This continued until I awoke at one point to find him IN my bed, accompanied by two mobile phones (one stolen from me) and one iPad (stolen from his sister).  

My bed suddenly felt less like a vast prarie and more like the confines of a (fabulous) battery chicken cage.  Perspective is everything.

My bed-robbing, steam-rolling son was going nowhere.  By 5am my arsenal of autism sleep strategies had as much meaning as the cave drawings of a stoned neanderthal.  I conceded defeat, went to his room, and crawled into his single bed.

When I woke, I had NO idea where I was.

Not one.

And not in a "Whoa! What a wild night!  Who's bed have I woken up in after a crazy party with beautiful people???" kinda way.

Definitely more in a "what the actual fuck, I can't remember my name" kinda way.  It didn't help that I woke mid-dream in which I was wheelchair bound, trapped in a hospital staffed by faceless nuns.

I really wish I could teach Dis-Orientation in a Map Reading course.  I'd be brilliant.

I'm not sure there's enough tea in the world to recalibrate my tenuous grip on reality.  But maybe reality's over-rated anyway.

sleep hygiene be trippin

Autism & Insomnia

 I don't sleep well.  

After years of hospital night shifts, babies and an autistic insomniac kiddo, I'm kinda suspicious of people who close their eyes and immediatly sink into oblivion.  

For eight ridiculous hours.  

I mean, what kinda weirdo sleeps for eight hours???

Sleepers are sorta smug fuckers.  They talk about sleep hygiene as if room temperature and meditation will recalibrate my broken pineal gland.  There's an implicit subtext of blame that I'm doing something wrong if I can't obediently nod off.  But when my melatonin making machinery is in the bin, along with my ability to tolerate valerian-laced tea (tastes like feet), I get to ignore the finger wagging.  

Oddly enough, the sleep gurus never include advice on recalibrating a giant (albeit gorgeous) autistic man-child who considers sleepiness a personal challenge.  They also never advise on how incredibly loud his feet are at 4am.

But there's a really cool upside to insomnia.

One of my greatest pleasures in life is drinking tea in bed, in the dead of night, when the house is silent.  I get to experience a depth of serenity that eludes me during daylight hours.

I hear the fridge humming.  I see faint bars of light and hazy refelctions in the darkness.  I feel the warmth of my husband's hand on my belly.  I feel the weight of the duvet wrap each toe.  I hear and feel at the edge of awareness.

Silence is crowded with ordinary magic.

No pressing jobs scream for my attention.  There are no constant, heavy footsteps.  There is no echolalia.  There is an absence of anxiety over the whereabouts of my boy.  Gadgets are powered down.  Urgent red lights have snuffed shut on tv screens.  

I listen to the dogs shift in their baskets downstairs.  The air tastes soft, sweet, velvety.  I am aware of the vast, dreaming sky arced outside my window.  Somewhere, I hear a fox cry.

Sometimes, I hear Finian talk in his sleep.  I wonder what he dreams about.

Sleep would rob me of this experience.  I'll take my joy where I find it.

Autism & Uncertainty

It's been a strange day.

I woke up unsettled and disorientated.  My dreams made me wonder if last night's herbal tea was sourced from a meth lab instead of Holland & Barret.  My head trips felt like they belonged to a 60s love-child forced to eat their way out of a field of magic mushrooms.  I was spaced out and cranky before my feet hit the floor.

My reflection in the bathroom mirror did nothing to ground me.  It felt like a family of disagreeable badgers moved into my hair overnight.  My expression suggested I may have been chewing thistles.  It wasn't good.

Then my bra tried to murder me by attempting to stab me in the heart with a rogue underwire. 

It was all very disconcerting.  

Things felt uncertain, like normality couldn't be trusted.  

By the time I drank enough tea to regroup into something semi-functional, I wondered if this is what life feels like for Finian.  

Does it feel like an unpredictable, sometimes unwelcome, world happens to him?   

He's facing into huge life changes, most of which he has no input into or control over.  The direction of his adult life will be dictated by people he doesn't know.  He has little comprehension that any of this is even happening.  The unfairness of it is crap.

It's hard to find any certainty in this life.  Being autistic has to intensify that experience.

There's truth in the paradox that uncertainty is the only certainty.  This is something neurotypical people try to integrate into their world view.  But it gets tiresome when lack of clear direction muddies the water even further for autistic people.

I don't know much, but I know I'm done with herbal tea and homicidal underwear.  

I suppose it's nice to be certain of something.  

"one star on Trip Advisor"

Autism & Amazing Parents

It's widely accepted that autism parents are saintly, wholesome creatures who could teach the Walton's a thing or two about being virtuous.  We have been gifted by the Gods with an eternal wellspring of patience, shouldering our load with inner tranquility.   We dispense kindly pearls of wisdom to those in trouble, having cultivated our Zen through the serene endurance of hardships.  

It is whispered that Buddha and Jesus are kinda jealous of the level of enlightenment we radiate.

Autism parents are the true Latter Day Saints.

"go in pieces"

No.  We're.  Fucking.  Not.

I'm having a shit day with Finian and I've just given him his third bag of crisps to try to stop him crying.  Learning to regulate his own emotions is a work in progress.  He's OK at indicating that a shower or a walk would calm him down, but he's unable to identify the reason for his irritability.  Equally, I'm OK at using Mindfulness and Other Tricks to help me attempt to co-regulate his emotions, but this relies on me getting enough sleep and eating properly.  This doesn't always happen.

Some days it all goes to shit and all I can do is throw crisps at him and hope it'll pass soon.

Today is one of those days that grabbing a shower is a hazy dream, and cooking a proper meal is the stuff of fantasy.  Balancing a Gin and Tonic on the ironing board while I tackle the laundry seems much more conducive to coping, as does a phone call to our friendly (and very familiar) take-away.  

You do what you gotta do to manage.

It's important that we forgive ourselves for being less than perfect, and for breaking the rules to survive a hard day.

Today I look like a small family of weasels live in my hair, and I seem to be wearing my husband's clothes (and not in a fun, Friday night sorta way).  Finian's breath stinks of salt & vinegar, and I may be half-baked by bedtime.

But I'm OK with not being an Amazing Parent.

Being OK will do grand.

The Waltons.
Off their tits on Mogadon.

Autism & Hormones

Hormones are impish little chemical messengers we need to stay alive.

We need insulin to transport sugar from our blood into our cells.  Adrenaline activates our primal survival instincts. Melatonin makes us sleepy at night (unless, of course, you're my autistic son who takes this as a personal challenge).  There's about 50 more hormones playing fast and loose with our well-being, trying to maintain some semblance of balance within our insanely capricious bodies.

Hormones are all well and good, though, until they try to kill us.

I'm not so much thinking about the major diseases like diabetes or osteoporosis.  I'm more thinking about the complicated stew that exists within households when everybody's hormones affect everyone else's.

For the past few years, Finian has been surfing hormonal swells and troughs that have left him half-drowned and disorientated.  Meanwhile, I've been busy honing my menopausal skills of  becoming wise (laugh among yourselves, please), developing acne and growing an impressive beard.  

The co-existence of puberty and peri-menopause is the back-lash of women's audacity to live into old age.  A century ago (in the west) the life expectancy for women was 48.  In 1500 we could look forward to the sweet release of death at 35.  Good times.

Menopause was not a thing when you were the geriatric mother of toddlers.  We were pushing up the proverbial daisies long before our ovaries cashed in their pension and retired to a villa in Costa del Sol.

These days, the chemical soup of living in a house with badly behaved hormones is the unwanted gift that keeps on giving..... like the Christmas bath salts that can be multi-purposed as drain cleaner.  We think we've reached the end of it, but it always surprises us with an unexpected new layer.

Recently we took Finian for psychiatric evaluation as we couldn't figure out if his escalating anxiety and self-harming was a result of puberty, pathology or autism.  Or maybe a thrilling blend of all three?  We're still none the wiser really.  It reminds me of the unending new layers of therapy; I dig into the dark places, process the blocks of awfulness and then endure the post-grief exhaustion.  Believing, in my naivety, that it's over.  But it never fucking is.  It'd be so wonderful to take a holiday from myself for just a while; I can totally see the attraction of searching for a little oblivion down a bottle or in a pill.  Of course, there's no real escape from our clashing hormones or from our dark stuff.  We have to be brave enough to live our real lives.  The best route of 'escape' is to work through the shit show with courage and vulnerability.

I bet our ancestral sisters, who never needed a tweezers or hair dye, are laughing in their graves at us.

not a real Christmas gift

Autism & Psychiatry

This morning my husband and I took Finian to see a psychiatrist.

His increase in self-harm and decrease in sleep lead us to our GP, which lead us to a CAMHS (child and adolescent mental health services) appointment.

The meeting was positive.  Our consultant was warm and attentive.  We decided to avoid medication for the moment and to bring his case to a multidisciplinary team (speech therapist, occupational therapist, psychologist, social worker etc) to decide the the best path forward for him.  

Afterwards, I had one of those moments of scalding clarity where I thought "oh my God, I just took my son to see a psychiatrist".  No matter how cosy I get with Autism, it never fails to blindside me with random sucker punches.  Finian doesn't deserve this.   As a rule, I don't dwell on the unfairness of how difficult his life is because of Autism.  Sometimes, though, I get (temporarily) floored by a sneaky stab of heartbreak.  I wonder if bored gods are playing cosmic chess games, using people as playthings.  Or if a careless Mother Nature stirred up his DNA for shits and giggles.  The injustice of it is hard to take sometimes.

Finian has just started his final year of school. Meeting with the psychiatrist was the first of many steps we need to take to plan the best adult services possible for him.

We are facing into months of cognitive assessments, meetings with his school, meetings with potential adult placements, and negotiations with his social worker.  This is flavoured with anticipation of attempts by service providers to play geographical ping-pong with him, as they are gearing up to bounce him from one jurisdiction to another.  It won't be an easy year.

What I'm not going to do, though, is allow bureaucratic fuckery dim the joy that Finian brings into our lives.  The delightful energy that he fills our world with will not be exhausted by officious wranglings.  It would be easy to buckle under the weight of the year ahead of us.  Focusing on, and celebrating, his defiant sense of fun will keep the energy-sapping stuff in the background where it belongs.

6ft 2 and loving Peppa Pig, coz fuck you