Autism & Back Flips

There's a funny sorta irony within psychology. 

Part of it's remit is the study of emotions........  which it does in an utterly intellectual way.  

Trying to explain emotions using frameworks and formulations is like trying to understand the experience of awe, or joy, or grief using geometry.

Tbf, the science of psychology seems to be the only way we can attempt to learn about emotions within a classroom.  But in reality, the only way to truly understand emotions is to feel them.

It's kinda funny that psychology as a whole does exactly what lots of us do when we want to avoid painful feelings........  we escape into our heads and attempt to science away the feeling stuff.

Avoiding feelings is called many names; defense mechanisms, cognitive bypassing, spiritual bypassing, repression, suppression, rationalisation, intellectualisation, or whatever banana you prefer to pick from the whole crazy bunch.

We avoid emotions for a damn good reason; lots of them are fucking awful.  Who in their right mind enjoys feeling sad, or rejected or heartbroken? 

To add insult to injury, we are often shamed for expressing our 'difficult' emotions, adding layers of loneliness and self-loathing into the mix.  So the stuffed-down feelings remain stuck and unprocessed, and we get to hate ourselves too.  Yay! 

In this part of the world, we live in a neck-up society.  Intellect is honoured over spirit.  Empirics are more highly valued than gut feelings.  Stoicism is respected over emotional expression.

We are rewarded for cutting ourselves off from our emotions (which we literally feel in our bodies).

By being super-rational, we get to avoid suffering the pain of loss, loneliness, despair or whatever emotional horror you're having yourself.  The downside is that we can't cherry-pick which feelings to guillotine off at the neck, so we end up being split off from all our authentic emotions.  This is when you hear people say "I don't know who I am".

Short-term this is a handy coping strategy.

Long-term, those pesky repressed emotions manifest as anxiety, depression, autoimmune disorders and unhealthy coping strategies (the usual suspects being alcohol, drugs, overworking, perfectionism etc. etc.).  At the risk of being....well.... rational, it makes sense to crash into bed for a few days, feel all the bad shit, cry, wail, gnash your teeth, want to die, hate yourself, hate the world and scream into the void.  If you're really lucky, you'll have a loving soul to hold you or buy you ice cream while you go through this, but sometimes we have to do it by ourselves.

But mostly, we are not allowed, or we don't allow ourselves, the horrible luxury of processing our pain.

Then Finian comes along and turns all this on it's head.  

He does a neat backflip and sidesteps all the intellectual defenses.  He feels all the feels, big and small, as they arise, with savage abandon.    Nobody tries to pathologise his grief as depression.  No-one labels his anxiety as an attachment disorder.  He is not prescribed medication, or instructed to stop crying, man up or get over himself.  He is allowed to process his emotions in real time, at his own pace, in his own way.  He is not shamed for it.

And then he's grand.

There must be irony in the water, as it's also funny how much we can learn from people with special needs.

"now, what page will I find those damn emotions on?"

Autism & OCD

 Denial is great.

Our cat Mabel vanished a few months ago.  We were devastated.......  until we decided that he's now living his best life in a new home, being fed wild salmon and caviar by a doting owner.  He's definitely not dead in a ditch somewhere.

It's not hard to maintain this palatable story.  There's nothing tangible to pick holes in our dreamy narrative (if we ignore the absence of the actual cat, that is).

But, sometimes reality is so persistent that the seduction of denial loses it's power.  I really hate that.  

Here's the thing.

I think Finian has OCD.

I'm not a big fan of creating a pathology out of an adaptive emotional response, but he's developed new behaviours over the last few months that I can't not-see.

He has developed a fixation with making sure all the plug sockets in the house contain plugs.  Vacant sockets have become a source of anxiety that can only be remedied by filling them immediately.

It's not hard to see where this probably stems from.  

The protracted, seismic transitions in his life this year have created uncertainty, which causes anxiety.  He has no control over the external forces that govern these changes.  In an effort to exercise some degree of control (and a sense of safety), he has latched onto filling plug sockets as something he can impose certainty on.

I'm not stopping him from doing it.  If this behaviour is helping him to feel a little better, then lets have more of it.  It's not harming anyone, and hopefully it'll become redundant when his adult services become better established.

I was chatting to a friend last week about the complexities of our sons (she'll remain nameless, except that she's called Tara and lives in Drogheda.  DM me for her Eircode and PPS number).  We wondered if they weren't autistic, if they'd still have anxiety disorders, hyperlexia, ADHD, possible photographic memories and whatever you're having yourself. It's hard to imagine what they'd be like without autism.

So, OCD is a new and (so far) benign acronym in our lives. It'll give me something to LOL about on my way to FML.

bow before your king

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 & Addiction

Last weekend my husband deleted over 2,300 episodes of Peppa Pig from Sky.  Two days later, Finian locked the sitting room door and un-deleted every fucking one of them.  His fine motor skills aren't great, so he didn't manage to give us the finger.  But I know he wanted to.

We laughed and said "gawd that kid is so addicted".  As I was eating chocolate and opening a bottle of wine.  Irony is a thundering fury-bitch, but she's usually worth listening to.  Hate that.

We tend to use the term 'addicted' loosely..... and I really ought to know better.  As I've talked about before, addiction tore my childhood apart.  It's taken a lot of therapy to help loosen it's grip on me. 

Of course Finian's Peppa Pig love-in is more aligned with the perseveration we see with autism, than with addiction.  So Finian gets a pass.

I can't speak with the same confidence about our weekend rioja and dairy milk, however.

What IS addiction though?  When does a pleasant pass-time become dysfunctional?

When we continue to repeat a behaviour for the rewarding hit, despite it being damaging (physically, socially or mentally), then we have a problem.  The dopamine surge is so overwhelmingly compelling that we are unaware of (or unconsciously deny) the harm we are doing to our bodies, minds, pockets, relationships and careers. We crave it in it's absence.  We surround ourselves with people who collude with our behaviour, and become increasingly disconnected from our own soul. We can be addicts and not even know it.

We can get addicted to anything.

Alcohol.  Prescription drugs.  Sex.  Porn.  Religion.  Instagram Likes.  Shopping.  Street drugs.  Gambling.  Sugar.  Dieting.  Martyrdom.  Peppa fucking Pig.  Cleaning.  Toxic relationships.  Exercise.  Candy Crush (true story).  Self-harming.  Shoes.  Keanu Reeves.

What we're addicted to doesn't really matter.  What's important is what it's shielding us from.

Addiction is seductive because it protects us from pain.

Addiction is soul-destroying because it protects us from pain.

Short-term respite at the expense of long-term wholeness.  

As the cheery Buddhists point out, life is suffering.  Sitting with, and owning, our awfulness is how we re-connect with ourselves.  Finding peace at the other side of  the (admittedly shitty) process is how we rediscover, and love, our true selves.

It's simple, but not easy.

Special needs parents need to be particularly vigilant.  We have plenty of reasons to crave escape.

Beneath the addiction, beneath the grief/shame/anger/whatever you're having yourself, is peace and self-love.  It's totally worth digging for.

Autism & Noise

My home is noisy.

I sometimes can't put a shape on my urgent need to escape, or why the persistent buzz of anxiety exhausts me.  I love my family.  I have purpose and joy in my life.  Yet I crave a roaring ocean, a stormy forest, a vast, empty sky.  I ache for restful birdsong and seasalt on my skin.  I want to lie in an open field with the sun in my face and the breeze on the back.  I long to be lulled by bees and made drowsy by distant traffic.  I am at a loss to explain this urge to flee.

My daughter's boyfriend, who I love dearly, recently articulated it perfectly for me.

"Your house is fucking mental" he told me.

Tbh, I had kinda forgotten.

In the same way that a fish doesn't know it's wet, I have become oblivious to the pervasive volume contained within our walls.  It is the constant heartbeat we are deaf to; the white noise we don't hear with our ears, but feel in our blood.

Clamour is ubiquitous.  We have no mute button.

Three TVs, in three different rooms, transmit a cycle of cartoon series.  A desktop pc spouts many open tabs of multi-lingual YouTube clips.   A portable DVD player syncs with the TV.  Finian vocalises his own autistic language; laughing, squealing, grunting, scripting, singing, humming, shouting, crying, snorting, talking.  But rarely silent.  He never stops moving, heavy feet bouncing between devices to adjust buttons and dials.  His mobile phone connects us to a river of nursery rhymes.  When he can, he comandeers his brother's XBox and streams his shows through that too.  I hear little of it.

Overwhelming sound is the silent river I swim in.  What I am ear-blind to, erodes my rest and invades my dreams.

I get that noise may, paradoxically, help defend him from sensory overload.  It may form a shield against the onslaught of sensory input he can't filter out.  None of this is his fault.

But it's exhausting.

A spell of silence, stillness, reverie would be divine.

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 & Mad Mothers

This has been one of the most difficult years of my life.  

There was Autism, usual family stuff, college and covid.  But in the Spring, the shell protecting my mental health cracked open and I fell to pieces.  One day, all the defenses I used to avoid my issues (maintaining facades, perfectionism, anxiety, depression, overwork, wine, rationalizing emotions, denying my own needs, unhealthy boundaries, whatever you're having yourself) just stopped working.

It was about fucking time.

My breakdown immersed me in a world of pain that I'd been avoiding for a very long time.

Many months of therapy have helped me to integrate most of my big psychological injuries.  There's still one or two sticky issues  I need to befriend, but I know I'll get there.  Tbh, I'd rather french kiss Boris Johnson after he's eaten a packet of Monster Munch, but you do what you gotta do.  Am wearing Big Girl pants now, and all that.

The big surprise is that processing the awfulness isn't as terrible as pouring all my energy into avoiding it.  I mean, therapy is horrendous.  It's like being atomized in a high-speed blender and then re-shaped in a really unfamiliar new mould.  It takes a while to get used to.  And making friends with the dark creatures in my mental basement has been...... unexpected.  

But avoiding it has been worse.  The relief of allowing the mask to slip is wonderful.  Breaking down gave me the freedom to recognize and discard what was bad for my soul.  It's a work in progress, but yanno.

Autism was the catalyst that forced me to engage with my mental health in a meaningful way.  It's very possible I would have continued to spin in my resistant groove for the rest of my days, had Autism not driven me mad.

It's kinda comical to be grateful for something that caused me pain, but here we are.  Alice in Wonderland knew her shit when she said "curiouser and curiouser".  

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 & 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 & 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

Autism & Choices

I made an unwise life choice last night, and I regret nothing.

I ate a particularly delicious bag of cheese and onion crisps just before going to bed.  I woke up wondering if overnight a family of incontinent weasels had used my mouth as a public convenience (and neglected to flush when they'd finished).  The crisps were totally worth a case of morning potty mouth, but I thought it only fair to gargle with industrial strength mouthwash before kissing my husband good morning. 

We make choices all the time.  Its part of prioritizing, surviving and building our identity.

For example.

I made a choice to commit to therapy.  It is shockingly painful and deeply exhausting.  Mostly, I'd rather eat a tractor tyre than process the stuff I need to.  But I consciously choose to do some hard work to level up as a human.

But it seems to me that much of our life choices are either unconscious, or are made on our behalf by other people. So often, we continue to make decisions using outdated templates, or we conform to other people's expectations.

It occurred to me that I could extend this notion to Finian and try a little harder to encourage him to make his own decisions.  It's kinda complicated with Autism, though.  If I gave him free rein, Finian would chose to play chicken with traffic, eat hair-clips (a new favourite) and be positively cavalier about nudity.  So some caveats have to be applied.

But helping him to make decisions is an important part of establishing his own identity.  How will he know what style of clothes he prefers if I pick his outfit for him?  How will he discover hidden talents if I 'protect' him from dangerous activities?  How will he learn what delights him if I micro manage his free time?

Making our own decisions and owning our mistakes are an important part of character building.  This applies to autistic people too.  Being 'kind' and making their decisions for them is ultimately counter-productive (btw I'm totally talking to myself here) and stunts growth.

Luckily my marriage survived last night's unwise decision.  To be fair, James would kiss me anyway because he loves me and a bit of breath-stink wouldn't stop him.  But choices, and their consequences, would be so much more enriching if made consciously and with ownership. 

the test of any marriage

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 & Restrictions

When the first covid lockdown was imposed, many special needs parents were match-fit for the coming months. Lots of us were used to life with limited freedom.  Many of us had already given up friends, careers, and sometimes even marriages to adjust to life in a different groove.  As I've often said, ultimately these losses were not a bad thing (even though they weren't welcome changes at the time).  I like the person I've grown into much better because of Autism.

So when covid first hit, life didn't change all that much for me.  I already had a PhD in Restricted Living and was working towards my doctorate in General Awesomeness. Lockdown was gonna be a breeze, and I was destined to graduate as Dr Awesome (with honours).

Of course, the universe had other plans.  It would have been fine if it decided to deliver a discreet slice of humility pie with a gentle reminder to cop the fuck on.  

But the universe didn't do that.  

The universe chose to deliver its life lesson by pouring my mental health into a Magimix and blending it with marshmallows and batshit.  Being a seasoned autism parent, with years of restricted-living experience, did not protect me from cracking open like a fragile (if fabulous) egg.

me losing my shit

I'm well on the road to recovery now, but it was a reminder that we are all vulnerable, no matter how strong we think we are.

I went on a forest walk with my family yesterday.  It was magic to relax, appreciate nature and enjoy each others company.  My daughter and I commented that a few years ago, the same walk with Finian would have been a stress filled nightmare.  Its kinda ironic that I noticed my life becoming less restricted during lockdown.  

Dealing with my mental health problems helped me to see restrictions differently (some are tangible limitations, some are nothing more than our own perceptions).  I would have expected the double whammy of restrictions and a nervous breakdown to be the unraveling of me.... and it was for a little while.  But ultimately they opened me to appreciate the quiet things in life that I often didn't notice.   

Autism & Labels

The more things change, the more they stay the same (deep, huh?  And I haven't even had a coffee yet).

I recently noticed the same old arguments circulating on social media again.   As well as being  little tedious, it's kinda surprising.  How can people yell at each other for so long and not move an inch? 

Maybe people just like shouting.   

Bunches of people are immovably shrill in their opinions about how autistic people identify themselves, and how they are addressed by neurotypical people.  The vitriol has been spiced up a notch by comparing the symbolic jigsaw piece to a swastika (the very drama!).  As with any argument, there are two, or more, sides.  I get that some people don't appreciate being viewed as a cryptic puzzle, or as a symbol of something missing.  I'm not crazy about it myself.  But I find it improbable that a jigsaw piece will incite mass autism-phobia, culminating in genocidal hysteria.  My son will not find himself  the subject of discrimination (or holidaying in a concentration camp) because of a puzzle piece.  

To be fair, historically labels have been used to create mistrust and segregation, sometimes resulting in injustice...... but this has been against a backdrop of social upheaval, economic crises and civic unrest.  Injustice never happens in a vacuum.  

It's not as two-dimensional as a simple logo sparking annihilation.  

Armageddon coming atcha.  Bring your jigsaw.  

The old shouting matches still rage about using the terms 'is autistic' or 'has autism'.  Some folk express stroke-inducing rage at being labelled 'autistic' as it infers that it is part (or all) of their identity.  Some object to being described as 'having autism' as it implies that they have a disease.  When my patience runs thin with the polarizations, I sometimes tell people my son caught Autism off a toilet seat.  I'm not always popular.  I like to hope that it's possible for people to have different opinions and still be friends, but maybe I'm an optimistic fool.  I just think there are more immediate things to be concerned about.

I have a different way of looking at it.

When I am scrubbing my son's shit off the walls (something I do less often these days thankfully), it doesn't much matter to me if he is autistic, has autism, or identifies as Gerald the three-legged hamster from Ardee.  I'm still scrubbing shit off the walls.  It seems like such a waste of time and energy.  My love for my son doesn't change based on the use of a word.  There are more productive uses of our precious resources.

I'm not autistic, so how dare I have an opinion about the impact of labels, right?

I was recently ascribed a bunch of labels to categorize my mental health difficulties.  I am very aware of the impact of labels.  It's hard when your fears become reality.  But with the labels, comes a sense of direction and the growing realisation that our difficulties do not mean we're weak or 'less than'.  Labels point me towards the areas I need to focus on.  They also afford me a degree of self-kindness when I am working through challenging moments.  

A label is not who I am, but a signpost to becoming a better version of myself.

How other people perceive our labels is not our business.  We have no control over that.  Even when they are being unkind or judgmental, its a reflection of them, not of you.  I believe it's not the word, but the intention behind it that makes a difference.

P.S.  Maybe the Nazis wouldn't have been taken so seriously if they had a pretty jigsaw logo embroidered on their lapels instead of a sinister up-side down cross.  

Just sayin'.

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.