Autism & Name-Calling

I finally did it.

I crossed the threshold from being occasionally distracted to living in the twilight realm of pleasant confusion.  

I called Finian "Milo".

Milo is the dog.

It's a fine line I managed to stay the right side of for an admirable stretch.  I suppose I should be grateful that I realised I did it.  And that Finian didn't respond to it.

Silver linings, and all that.

Tbf, Finian and Milo have a lot in common.  They both chew the furniture, howl at invisible phantoms and have, on occasion, used the kitchen floor as a toilet bowl.  Easy mistake, really.

I can't blame overwhelming stress for my lapse, either.

As a family, we're cruising through relatively smooth waters, and relishing every minute of it.

Finian is thriving in his adult day services.  He loves hanging with his  friends at his Saturday youth club.  Our older adult 'kids' are painting their own worlds with evolving palettes.  

On a professional level, I'm in the messy process of setting up my own counselling business.  This is fun, if you consider skewering your eyeballs with toothpicks fun.  I comfortably hold space for clients as they grow through the dark recesses of their souls;  however, swallowing the alien language of sole trading, revenue and marketing is like drinking bleach.  I'd prefer to rote learn Ulysses in ancient Aramaic. My resistance has resistance.  But, still, this is not the source of my mis-dropping of names.

Maybe this pleasant confusion is peace?  

It's nice to lean into it without waiting for the other shoe to drop.  Maybe I'm relaxed enough to allow things be as they are? 

To breathe into this life, without pushing, grasping or resisting, accepting the tornados and sinkholes as part of the rich tapestry, is a nice place to be.  When people talk about the search for their 'authentic self', this is where it lives.

Surrendering the weight of trying to force life to be other than it is, is deeply wholesome (if unfamiliar).  Confusing my son with the dog is a pretty stitch in the comfortably bewildered embroidery. 

Autism & Growth

It's fair to say that growth is spiral, not linear.  The old two-steps-forward-one-step-back dance is a foxtrot most of us are familiar with.

I can say with certainty that my own growth is not as smooth as I'd like.  This morning I opened my laptop in Costa to do some very self-actualised studying.  I was feeling terribly grown-up.  Then I balanced the karmic scales by spilling my entire mug of tea over the table before I even sat down.

I didn't even blush.  This is who I am.

My inner toddler enjoys a good tussle with my outer adult.

Everything in the universe strives towards equilibrium, my dignity included.

Prior to this I met a dear friend for coffee (which obediently remained in its mug).  Our sons spend a lot of time together in their adult day service, and we noticed that they're positively influencing each other's progress.   The lads are kinda curious about what the other is engaged in and sometimes they join in together.  It's a joy to see them vibe off each other and enjoy each other's company.  This is a developmental stage lots of autistic people never hit.  It fills me with optimism about how they may evolve over the coming years.

I told my friend about a developmental leap I only noticed in Finian this week. 

Twice this week he purposely took his phone to me with the intention of us watching one of his favourite cartoons together.  Joint play/enjoyment is a milestone neurotypical kids tend to reach at about age 2. This is built on the joint attention stage (usually about 9 months) where babies point to something they like and want the caregiver to look at it too.  To my knowledge, Finian hadn't reached that yet.

Now at the age of 18, he's hanging out with his friend and sharing moments of joy with me.

Our kids will always progress, in their own time and in their own way.  It is a goal of mine to move towards being my authentic self in the same manner, without forcing it or denying it.  

Years ago, a friend told me that our kids have a developmental delay, not a full-stop.  We just had to put aside our expectations and accept them for who, and where, they are.  She was bang on the money.  This is the idea of takiwatanga, which I wrote about a while ago.

There is always joy and hope with our special needs kids, made all the sweeter by the pure authenticity that comes with it. 

Autism & Takiwatanga

Native Maoris don't recognise autism as a disability.  This 'primitive' culture were rocking neurodivergence long before white people arrived with a welcome gift of smallpox and genocide.  

Indigenous embrace of those with special needs is so pure that they don't have a word in their vocabulary for disability.  

The closest phrase they have of a definition of autism is "takiwatanga", meaning "his or her own time and space".  

What a beautiful phrase to taste and roll around your mouth.  

His or her own time and space.

Imagine if we enjoyed this flavour of autism, instead of wishing to change it, break it or spit it out?

In this insane corner of the 'civilised' world we value speed, productivity, material wealth, aggressive acquisition and perpetually anaesthetising 'entertainment'.  

We are rewarded for running on empty, using a burnt-out engine imposed on us by a toxic culture.

The notion of sitting quietly with ourselves is so alien that it fills us with terror.  Most of us have never met our true selves.

In my work as a counsellor, one of the first exercises I invite my clients to try is to practice five minutes a day of sitting in stillness.  Most struggle hugely with it.

In the west, we sleepwalk through our lives at lightening speed.

It's no wonder we frame autism as a set of infuriating deficits.

So, I caught myself feeling impatient with Finian yesterday.  

He is a handsome, able-bodied young man but I have to help him have a shower.  I found myself rolling my eyes as I had to rinse his hair and help him shave.

I'm a product of my western values, so I'm not being too hard on myself about this, but my life with Finian is teaching me to experience the world with a wider lens.

I took a deep breath and stayed with the discomfort of slowing down.  I remembered to be, instead of do.

In first nations cultures, our autistic loved ones embody mindfully living in their own time and space.  Seems to me that primitive cultures and disabled people are lightyears ahead of the rest of us in knowing their own souls.

Autism & Guilt

Finian's anxiety is peaking.

He demands more hugs.  Less sleep.  More attention.  More meltdowns.  More body tapping.  More stimming.  More pacing.  More reciting obsessive lists.  More hours spent sitting with him as he howls instead of washing my hair, or brushing my teeth.  More anxiety-laced, repetitive questions.  More echolalia.

I'm fairly certain it's linked to his upcoming transition into adult services.  He says he's happy about it, but we know that autism and change don't make a happy marriage.

We've had a great summer.  He's been living his best life.  Sleeping in.  No demands.  Day trips.  Walks.  Uninterrupted access to me for reassurance and cuddles.  All the good stuff.

I'm the constant touchstone he can rely on to be reassuringly present, no matter what else is going on in his world.  With neurotypical kids, this reliance is gradually replaced with growing autonomy and self-reliance.  This isn't how it goes with our autistic kids.

It has become an impossibly complicated dance to try to foster his independence while helping him to feel secure in a world not designed for him.  

Guilt is unavoidable, so I own it instead of denying it.  

I'm ingraining his dependence on me by being his safe place.  This is not ideal, but he is more vulnerable than most.  I'm also provoking his anxiety by pushing him away from me into adult services and respite;  he is a young man and I won't be around forever.

Guilt is guaranteed either way, but I accept this and oddly don't feel bad about it.  It seems to be part of the special needs deal.

Before Finian, I had a negative, polarised view of guilt.  I believed it was a nasty hangover from a catholic childhood that needed to be peeled off  like an ugly scab.

Now I see guilt as something more nuanced; something softer than good-or-bad, that I can carry fairly easily.  It is an unavoidable consequence of special-needs parenting.  It seems wiser to make friends with it than to cram it into my unconscious (where it could manifest as unhelpful illnesses, addictions or general lunacies). 

I am eternally grateful to Finian for teaching me the complex layers of emotions we tend to shy away from.  

That said, I'll be glad to discard my unwashed, homeless look, and get back to seeing my clients next month.  The bin-girl vibe is not my jam.

Autism & Zen Moments

So I had this really cool experience the other day. 

I was sitting outside watching the wind blow through the trees.  The light was dancing off the leaves in a lovely silvery-green kaleidoscope.  The breeze on my skin was soft and warm, carrying with it the hush of chattering leaves.

I had nothing on my mind.

It was one of those rare, reverential moments when I wasn't chewing over the past or consumed by future worries.

And then I just knew something.  

Not in my head, but deep in my belly.  I knew it without words, in the same way that I know I love my friends and family.

I witnessed each leaf as a discrete thing of beauty, perfect as it's own entity.  But I also saw that each separate piece of foliage was an integral part of the whole tree.  Each leaf reflected the elements with stunning beauty, unaware of it's part of the whole, unaware of it's effect on leaves and roots and branches distant from it.  We live believing we are disconnected beings (which on one level we are) but really each of us is an aspect of something much greater than ourselves.  The whole being greater than the sum of our parts, and all that.

Separation is an illusion.

I'm pretty sure I heard this kinda idea before in an intellectual sorta way.  But I didn't know it til now.   Now I know that we are all connected, essentially the same entity.  We just tend not to experience this, in our limited, human way.

So this is all very cool and lovely.

Now.  Pop quiz.  

How do I explain this to an autistic young man who's so attached to me that he'd quite happily crawl back into my womb and watch My Little Pony videos in there forever?

I'm being tongue-in-cheek about it, but it's safe to say we're at different stages of our spiritual journeys.

It's not that I'm a zenned out ascended master; the only thing I have in common with the Buddha is a wobbly belly and a tendency to lol at shit.  But Finian's attachment to me, while heartwarming and gorgeous, is something I'm aware that I need to bring some ease to.  I want him to live a long, happy life after I am no longer his 24/7 carer.  I don't want his attachment to me to bring him pain.

It's something I need to be sensitive about to help him become the amazing, most expressive version of his beautiful self.