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 & Seeing Things Differently

This afternoon my husband gave the lawn the first cut of the year, revealing a winter's worth of dog turds buried beneath the grass.  That a small dog has such an productive colon was nothing short of  admirable.  I spent an hour cleaning up the mess, delighted to be outside doing something purposeful.

This gave me pause for thought.

It was quite a revelation to realise I was happy to be a shit shoveller. 

It won't look great on my CV, but that seems to be where my life's at right now.

It's safe to say that covid has changed our perspectives.

A little over a year ago, I would have spent Saturday hanging out with friends, shopping or visiting family. 

Now I'm excited about dog shit.

This made me wonder about how I valued life pre-covid. 

I miss my friends and family desperately, but I definitely wasted too much time mindlessly chasing pointless stuff I didn't even want.  The pandemic has been a blunt education, and I'm a very slow learner.

Meanwhile, Finian adjusted his own perspective with little drama.  We explained the restrictions to him, he said OK, and that was that.

He accepts how the world operates now, although allows himself the odd complaint about missing out on kiddie rides (never mind that he's 6ft 2 and about 10 years too old for them).

It's humbling to be schooled by an autistic kid.

"just change your focus already"

Canine crap is an unexpected source of inspiration.  I doubt poems will ever be written about it.  

But there's peace to be found in caring for your own home that can't be found in a shopping mall.

Autism & Covid Prison

A few days ago I was talking with my oldest son about jail; we were sickened that a teacher found guilty of sexually assaulting 23 schoolboys was sentenced to only eight years in prison. It felt to us that eight years being detained at the tax payers pleasure was an insult to the pain he visited on those boys.  Neither of us have any experience of jails, but we remarked that a spell of free accommodation, no bills and no living expenses seemed almost like a sick reward.  On later reflection, I would change my view of this somewhat.

This could have led into a discussion on the ethics of crime, punishment and rehabilitation but I'm pretty sure our conversation somehow segued into comparing the merits of various carbon monoxide monitors (he's a mechanic in the Navy).  Don't even ask.  I filed the subject under 'Disturbing Content I'd Rather Not Think About' in my subconscious and considered it dealt with.

Except it wasn't.

Look what just popped out

I don't need to remind anyone that we've been under lockdown, in it's various guises, for an entire year.  What started out as an almost thrilling social experiment has devolved into a planet convulsed with anxiety and depression.  This third total lockdown seems to have broken even the most resilient of spirits.  We are trapped within a 5 km radius, denied the pleasure of friends and numbed with tedium.  We are caged with family we love but need a break from.  We are constantly accompanied by the dread of  inadvertently infecting someone vulnerable.   We are trying to home-school reluctant children while  wrestling with the  growing belief that there's less and less reason to get up, get dressed and get active.  None of us are going anywhere.  The vaccine roll-out is painfully slow and we are clueless as to when all of this will end.  This is coloured with the pervasive backdrop of dealing with a threat we can't see, hear or smell.  Adrenaline has frayed our nerves to discordant tangles; our nervous system is a broken house alarm screaming in the night that everyone ignores.

Dealing with special needs kids in these circumstances is crippling. There are long days of managing volatile outbursts.   There are even longer nights of  my son's endless pacing along the corridor outside our bedrooms.  He can't sleep, he has no routine and he is madly anxious about the phased return to school.  His sensory seeking behaviour is off the scale.  We are seeking private child psychiatry and occupational therapy services.  In many ways, special needs parents were match-fit for lockdowns.  We are used to isolation and restrictions.  But the withdrawal, and inconsistent resumption, of school, respite services and home support was a series of cruel blows that just about floored us.

I am aware that everyone has their stuff to deal with.  This is not a comparative study in Hard Shit.  The point is, that I could deal with this if I wasn't imprisoned in my own 5 km cell.  I had no idea how much I need to see the people I love, or how much I depend on them to help through the difficult stuff.

A year of lockdowns has given me a respect I never had for imprisonment.  I still believe that an eight year sentence for a sexual predator is hopelessly inadequate, but I no longer view the removal of freedom as inconsequential.   Prison is a form of hell and we have a way to go yet.