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 & Electronics

 I am in awe of neanderthal autistics.  

To narrow the timeline a little, I am in awe of any autistic person who existed prior to this shiny, new milennium.  Specifically, I am perplexed as to how they survived.

In the same way that a fish needs gills, and a bird needs wings, an autistic kid needs a smart phone grafted like an extra limb onto their body.  In time, maybe evolution will do the decent thing and genetically predispose autistic kids to sprout an iPhone from their wrist.  In the meantime, we have to settle for making Apple investors laugh all the way to the neurodivergant bank.

This morning, a Twitter mum commented on the guilt she feels over her kid's reliance on gadgets.  Perverse as it is to take pleasure in someone else's distress, I was DELIGHTED that another parent feels as inadequate as I do.  It's always nice to have company in the shit swamp. 

I did a quick audit on Finian's current electronic inventory.

He owns a smart phone, a dvd player (inc tv), a portable dvd player and a nintendo.  As well as having access to the family TV and desktop.  And this doesn't include the various iPads, laptops and smart phones he robs off his family members (he laughs in the face of passwords... cracking them just adds to the fun of it).

I am more than aware of how awful this is and how summary execution by the parenting police is just too good for me.  My mothering skills seem to have been learned from a manual co-written by Myra Hindley and Cersei Lannister.  A Good Mother would spend 16 hours a day enaging their kid in finger painting and visiting museums, in between baking organic gf/cf meals and worrying about their gut biome.  

Meanwhile, I feed my boy Nutella on pancakes and allow him free access to the internet, hoping that I won't die of inadequacy by bedtime.  Some days I even get dressed before noon.

I stopped feeling guilty about the use-of-gadgets thing ages ago.

All week, Finian works hard at school.  The rest of the time he is working harder than we can imagine to survive in a world not designed for him.  If he can find some relief, and even a little pleasure, in watching Peppa Pig passive aggressively body-shame her father, then I'm down for that.  

I'm just a little horrified for the generations of pre-millennial autistics who didn't have cyberspace to save them from going insane.

Peppa, that fat-shaming whore

Autism & Guilt

Finian attends a great respite service called the Maria Goretti Centre about once a month.   I love and trust them with all my heart.  When he turns 18 next June, this service ends.  I'll miss the staff as much as the support they give us.  They're like extended family.

Of course, the respite is more for us than for Finian.  It's hard to make peace with the fact that I need a break from my beautiful boy so I can sleep, or make a phone call, or dial down my adrenals a few notches.  I feel like a shit human being to look at my gorgeous son and know I need a rest from him.  

It's a lot to bear that he has to navigate this world through an autistic lens, and that I'm not always enough to contain him.  So even though I need respite and am deeply grateful for it, it comes at a price.

I drove him to school this morning and noticed he was a bit quiet.  He was going to respite after school so I put it down to a change in routine.

I got a call from the school a few hours later to tell me he got really upset and regressed to behaviours we hadn't seen in a few years.  It's heartbreaking to send your sobbing child away for a night because you need to sleep, no matter how much you try to rationalize it.  

Finian will eventually go to live in a residential setting.  The prospect of him not understanding why I'm not with him is almost too much to bear.  

Autism is the guilty gift that keeps on giving.