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 & Queer Eye

It hasn't been the easiest evening.

I missed yoga, burned the dinner and lost my glasses, all because of autism.

Finian is "exploring his emotions" (parenting code for being a massive pain in the arse), and is currently in his Unstable Nuclear Missile phase.  Everything is wrong.  He wants me to fix All The Things NOW.  It's hard to tell if he's singing or crying.  The wrong anything could trigger an explosion that might destabilise the earth's orbit.  

My son's bad mood could actually accelerate global warming.   

I'm not sure I want to become famous for this.

So before I get too comfortable on my cross (the view's great, but the nails kinda hurt), it's worth getting curious about looking at things in a different way.  

Autism sucks, that's a given.  But being martyred to it is optional.  

It's possible I burned the dinner because I'm a mediocre cook with the planning skills of a drunk toddler.  A myopic adult should know better than to take off the glasses they need to find their glasses.  

Missing yoga, though, is definitely on autism.  I couldn't leave my daughter to watch an autistic kid with the emotional stability of uranium.  No amount of downward facing dogs would make that OK.

But, there's always another way of looking at things.

Reframing the picture doesn't mean sticking metaphorical fingers in your ears to deny reality, but sometimes stepping back and being open to a different perspective can put a positive spin on a crappy situation.

So while I freely acknowledge that (this evening, anyway), my son is a Finian-shaped bag of wasps with all the charm of a farty rhinoceros, I'm choosing a different lens to view things through.  

I got to light the fire, change into my pjs extra early, and binge watch Queer Eye, while keeping an ear out for emotional volcanos.  So far, Finian is happily (and loudly) belting out the theme tune to Wonder Pets (in Hungarian), so all remains good.

So I'm shamelessly applying my own Queer Eye (am fairly certain they won't sue me) to view my own world in a healthier way.  

(p.s I love my son and don't really think he's a farty rhinoceros.........)

Autism & Alcohol

In the month of December I drank enough delicious red wine to stun a small (but drop-dead gorgeous) ox.

A bratty part of me wants to brag about this.  However, my internal organs, my sleep patterns and my lack of energy are a bit more grown-up, and have responsibly informed me that I need to stop.  Hate that.

I love red wine, and I want it to remain a fun, enjoyable part of my life.  But there's enough alcoholism in my extended family to award me a pedigree, so it's something I have to keep an eye on.  It's reassuring for me to occasionally step away from the rioja and reframe my relationship with it.  I don't want a divorce from it ...... but the odd trial separation with a bit of reflection thrown in keeps things healthy.   

So I'm doing Dry January.

As ever, a month or so of not drinking is illuminating (even just four days into it).  Already I'm being reminded of some unhealthy triggers that urge me to rip the cork out with my bare teeth and neck it straight from the bottle.  I'm nothing if not classy.

Autism is close enough to alcoholism in the dictionary to be worrying.  I've become aware that when I have a stressful spell with Finian (which is just about every day, give or take) I automatically think "I can manage this.  I'll have a glass of wine tonight and I'll be grand".  So instead of enjoying a relaxing drink at the end of the day, I'm self-medicating so I don't go insane.  What a waste of lovely wine.

Autism is hard, and shushing the chattering monkey in my head is easy with alcohol.  Booze soothes any tendrils of dread in my stomach.  It makes everything seem hilarious.  Eventually it drop kicks me to sleep with great insistence.  

But it's not so funny when I wake up three hours later, anxious, fuzzy-headed and unable to go back to sleep.  With another fun-packed day of autism ahead of me.

So I'm using this month to recalibrate, and rediscover less headachy ways of managing the stress of living with autism.  Truth be told, I'm struggling a little with boredom, of all things.  But that's a small trade-off for feeling rested, energised and motivated.

Autism and alcohol has the potential to become a car-crash relationship.  It's really good for me to take a step back from it every so often so I can continue to enjoy it, instead of rely on it.

"if I believe I'm beautiful, it must be true" (Buttercup, 2022)

Autism & Routines

Rule #1 when you have an autistic kid is to establish routines.  

Lots of autistic people experience the world as chaotic and hard to interpret.  It's sometimes described as being lost in a foreign city where you have no map and don't know the language.  It might a bit like when I first moved to Monaghan and depended on my husband to decode what a 'shuck', 'rulya' and 'clart' meant.  Quite a few people thought I was English (I come from the next county).  I'm still considered a suspicious blow-in 25 years later.  

OK, so a Louth woman living in Monaghan is a bit of a stretchy metaphor for autism, but it's all I got.  My energy levels are kinda down the toilet today.

Anyway,  it's not hard to understand why autistic people become exhausted and overwhelmed.

Building routines gives a sense of predictability and safety in an unfathomable world.  For sure, routines can be kinda tedious, but so is Kim Kardashian's alarming arse (it seems to be everywhere) and lots of us find the time to pay attention to that.   I suppose a caveat to this is that routines shouldn't be too rigid as teaching flexibility is important too.

I stopped using most social media platforms a short while ago.  It's still uncomfortable, but a good uncomfortable.  It's kinda like having an itch in a limb I don't have....... there's nothing satisfying about scratching it.  So I stopped.  It's giving me more time to attend to the real world and the people around me.  

It's good to be more focused on maintaining Finian's routines.  What's surprising is how soothing his routines are for me too.  When I'm more concerned with making lunch than some B lister's divorce, that has to be a win.    

Yeah I know I'm a massive hypocrite.  I get my lovely husband to post my blog on his platforms, but what can I say?  Unlike KK's terrifying buttcheeks, I'm not perfect.  But it's good to keep moving towards being authentic.  Working around routines is another baby step in getting there.  

I keep having a recurring dream where a river floods the road ahead of me and rolls uphill.  I think it'll be impossible to wade through the current while going uphill, but not only is it easy..... it turns out to be beautiful.  Sometimes making changes isn't as tough as we fear.

It's humbling to keep learning from a kid with special needs.  But it's also pretty damn cool.

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 & Kindness

Kindness is a tricky concept to teach an autistic kid.

Finian gets that it's expected of him to occasionally share his salt & vinegar Tayto, but I'm pretty sure he only complies to get me outta his face and not out of a sense of moral obligation. 

Really, it's a tough enough gig for many neurotypical people to grasp.  

Kindness, as the cliche goes, is often mistaken for weakness.  This is a sad loss for the western world (it seems to be a western thing to admire stomping all over other people to get what you want?  Just look at the movies we love).  But kindness is not martyrdom.  

As I get older (and work through a lot more therapy) kindness is starting to appear as more of a superpower.  Maintaining the belief that kindness is the antidote to an often jaded, cynical world is an act of faith.  It requires strength and stamina that some days I have to dig awfully deep to find.

Here's what I believe.

Any act of kindness, no matter how small, creates a ripple effect that exponentially increases positivity and goodness.  Ultimately we all benefit, even indirectly, as it makes the world a better place.  Cynics may roll their eyes, but cynicism is lazy.  It takes thought and effort to emit kindness into a world you may have been battered and abused by.

I guess a caveat is that being kind should not hurt you.  There's nothing to be gained by channeling your inner doormat and tattooing 'masochist' across your face (you'd need a pretty big face tbf).  We are also obliged to practice kindness towards ourselves.

I think a particular challenge is to extend kindness (without hurting ourselves) to those who hurt us, or who we don't like.  That's next level Buddhist shit right there.  It makes sense that wishing ill to others is like drinking poison and expecting the other person to die.  The only person we make sick is ourselves.  It's a counter-intuitive win-win to extend good wishes towards those who wounded us.

Bitterness shrinks the soul and condemns us to live in the half-light.  Love is liberation.

A really hard part of healing my own wounds is being brave enough to experience the pain and bitterness I  buried many years ago. Owning the awfulness I avoided with overwork, perfectionism, wine and fakery has only been possible because I try to be kind to myself.   I've cried more in the last six months than in five decades (and I really fucking hate crying), but I also like myself better.

Being kind to myself has increased my desire to be kind to others, as I know how healing it is.

Now all I have to do is teach this to my autistic son.

morals never tasted so good

Autism & Misery Porn

 Last night I met three friends (all Autism parents) for something to eat.

The food was lovely, the service was awful and the craic was great.

The thrill of travelling outside a restricted zone and sitting with Actual Humans was intoxicating (my family and close circle sadly don't qualify as Actual Humans).   Eating in a public place without fear of summary execution felt positively decadent.

We had a year and a half of talking to catch up on.  As seasoned Autism mothers, used to summarizing lengthy events into brief, efficient sentences (usually in between peeling children off ceilings etc etc), we covered a lot of ground.  We talked kids, hair, husbands, getting older, mental health, lgbt, missing Pride, work, money, covid, home improvements, school etc.  

We laughed a lot.

Inevitably we talked Autism.  It struck me that we were able to talk about the overwhelming, soul-destroying aspects of living with Autism without spiraling into a well of despair.  We talked about the fear, sadness and exhaustion that colours our days while celebrating the joy that our kids bring into our lives.

We acknowledged the awfulness of it without becoming the awfulness.

It felt grounding and somehow safe to spend time in the company of friends who are practiced at walking that line.  It's easy to get stuck in the habit of misery.  It's equally easy to be seduced by the reality-denial of toxic positivity.  In reality, we have a foot in both worlds.... but hopefully not so deep into either world that we lose our centre of gravity.

There is a balance somewhere between toxic positivity and misery porn.  

It became clear to me last night that surrounding myself with people who don't suck the joy out of me or expect me to be relentlessly buoyant is a healthy place to be.  There is no balance in extremes.  There is liberation in spending time with people who can accept my sadness and  joy with equal enthusiasm.  

Remaining in a state of perpetual misery can be a blind addiction.  Catholic Ireland is especially good at validating torment; suffering is good for the soul.  

Equally, denying the painful stuff, and insisting on relentless positivity, condemns us to an inauthentic existence filled with repressed emotions and stomach ulcers.

Being with friends who see me and accept me, without trying to change my experience to fit their world view, is affirming at soul level.

There is wisdom in keeping good company.

Autism & Violence

Today we are having a particularly autistic day.

Finian is tightly coiled, ready to snap at a moment's notice.  He is physically tense, loudly vocal and sensory seeking.  He is given to short bursts of screaming mixed with crying.  Our usual arsenal of tools to de-escalate an impending meltdown (walks/ showers/ calming the environment/ drives etc) are not quite making the grade.  It's hard to tell how things will progress.  His tension may eventually diffuse.  Or he may spiral into a full-on meltdown.  It's really in the lap of the gods.

When Finian struggles to regulate his emotions, the shadow of violence boils closer to the surface.

It is many years since Finian assaulted me.  In full meltdown, he is more likely to self-harm, usually by scratching himself until he draws blood or by banging his head off a wall or floor.  It's hard to make peace with being thankful that your son chooses to assault himself instead of you, but there it is.  

Until the age of around ten, Finian often lashed out at me.  Probably the most traumatic event was a sustained assault he launched when I was driving the car on a dark, rainy night. Being battered by your child is emotionally and physically shocking.  It's complicated by the fact that, unlike intentional domestic abuse, it's not the child's fault.  His ability to process and express overwhelming emotions was (and is) limited, and sometimes used to erupt in physical violence.  Not that it was justifiable, but it was a measure of his communication difficulties.  Attempting to process being assaulted by someone you love, while trying to manage the overwrought emotions of that person, added confusion to pain.

Eventually, through education, occupational therapy and speech therapy, Finian learned to refrain from hitting other people.  This is a huge deal.  An assault from a grown man is a whole different ballgame to that of a ten year old boy.  Plenty of parents are not so fortunate. He still hasn't fully mastered refraining from self-harm, but he is getting better at expressing his difficult emotions in a healthier way.

That said, when Finian is filled with this level of tension, the threat of violence is never far away.  His capacity to express his rage by lashing out is clearly visible.  I am not afraid of my son, but I am real about the fine line that holds him back from violence.  As a small woman, it feels threatening to have a tall man scream in your face, no matter how much you love him.

Violence lives in the shadows, but it is there.  It is important that I accept it as part of my son's whole Self, no matter how uneasily, so that I can better manage it if it manifests.

Autism & Depression

Autism and Depression are locked in a miserable marriage, but they grimly cling onto each other in an ungainly, dysfunctional dance.

I always go to pains to point out that Finian's Autism didn't cause my Depression, but it's a perpetuating factor that isn't going anywhere soon.

I've been managing my Depression pretty well over the last number of years, until I decided last year that I was "just FINE" and weaned off my medication.  I continued to do well (or so I told myself) and coped with covid restrictions and the isolation that comes with it.  Then the schools closed.  Then support services were withdrawn,  Then my son was locked in a 5 km bubble with me 24/7.  Then he stopped sleeping as he was out of routine.  

All day he roamed the house, switching electronic devices on, switching lights off, stimming loudly, needing sensory input, throwing tantrums, screaming, slamming doors shut, flinging doors open, devouring non-edibles, refusing proper food, leaning into my face demanding dvds I didn't have, occasional self-harming, reciting endless scripts of favourite cartoons, cranking speaker volumes up to the max,  moving, moving, moving.

At night he would sleep for 3 hours and then pace endlessly on the landing, back and forth, back and forth, back and forth until morning.  

Then it started all over again. 

And again.  And again.

I stopped sleeping.  I stopped eating.  I woke every morning with a bellyful of dread. My weight dropped.  My concentration fractured. My heart raced.  My mind became an incoherent snarl of thoughts and images.  I forgot how to breathe.

But still I was FINE.

Until I wasn't.

My resilience ground down to expose nothing but raw nerve endings. Inevitably something was going to break me.  It didn't really matter what.  The point is, that this tsunami was coming at breakneck speed and I could no longer avoid it.

When I broke, I became embodied psychological pain.   

I drew the blinds and crawled into bed in a tight foetal position.  I could barely speak. My heart thudded like wet clay in my chest.  My lungs contracted. I was frozen with terror.  I wished to die. 

I'm blessed to have a husband who cared for me when I was a crazed, needy wreck.  He got me medication. He fed me.  He brought me water.  I could barely crawl from  bed to bathroom.  He held me and told me he loved me even when I was an incoherent mess.  I was truly insane with Depression.

I'm slowly getting better.  I had a few false dawns where I believed I was on an even keel, but recovery is not linear.  Patience is key (sadly something I haven't been blessed with).

I go out for walks.  I'm starting to eat.  I have spells of good spirits.  I no longer wish to die.

Depression is a violent beast but, strangely, some good has come out of it. The inner turmoil unearthed deeper psychological issues that I know I need to address.  This will be difficult and humbling, but will result in personal growth.  It also served as a reminder that I have people in my life who unconditionally love me, even at my very worst. 

The point is, Depression is very real and very near when you have a special needs kid.  It's always sniffing the air around you, waiting for a moment of vulnerability.  It quietly thunders toward you and you don't even see it coming.

Awareness, support and self-care are key to surviving and managing it.  Learn about Depression here and go to your GP, a friend, a psychologist.... talk to the postman if you have to.  But don't try to manage it on your own.  Depression distorts your thoughts and contracts your spirit.  

Depression lies to you. 

It is survivable and manageable.... it can even expose some deeper layers you now have the opportunity to deal with.  But it's very hard to navigate on your own.  Special needs parents need to be able to reach out to each other (and to professionals)  to help weather the storms.