Autism & Getting Weird

Change is always weird.

This particular transition knocks weird outta the park, though, as polarised stop/go events have me scratching my menopausal beard in bewilderment.

There's a lot happening, and nothing happening at all.  

We're getting ready to start the slow integration of Finian into adult services.  The whole process has taken the better part of a year.  There have been long periods of silence, punctuated by mad flurries of activity.  Next week he's going to attend for an hour for 2 days, with the intention of eventually working up to a full week.  I'm encouraged by their client-centredness, but I have to own that I'm worn out by the protracted nature of proceedings.  It feels like I've been holding my breath for a long time.

Finian has been expressing his anxiety in his own unique way.  

He's been picking the paint off woodwork in the dead of night, waking us up to inform us that he's turned into a giant, nocturnal mouse.  "The paint is scratched" has become a mantra I will never use in meditation.  

The distressed look (both woody and parental) is now big in our house.

He's pica-ing like a boss.  I found him having a good old chew on the dog's toy bone a few times.  Finno has an immune system made mostly of pig iron, so he'll probably give some exotic disease to Milo rather than the other way round.  I'm now watching the pooch for signs of Dengue Fever or Chagas Disease.  Meanwhile, Finian is healthy as an ox, with beautifully shiny, white teeth.

He's been blindsiding me with blitzkrieg meltdowns, in that he's binned the usual escalations I can work with.  Normally I like surprises, but I've discovered I prefer the ones that are wrapped and expensive.  To this end, for my birthday, I would definitely prefer a sparkly piece of jewellery than a conniption.  

Just sayin'

I've caught him peeing into the drains outside.  I don't know if this is anxiety related, or if he's just being a lazy-arse.  It's been a dry month, so maybe it'll do the roses good anyway.  Not too bothered about this one.

In addition, my daughter has moved into college accommodation.  I miss her like mad but am also delighted for her.  There's a feeling of not quite knowing what to do with myself, while being savagely proud of the focussed young woman she has become.

So these changes seem to be laced with some kinda ambivalent identity disorder.  They're behaving like feral children who had too many blue m&ms and aspartame-flavoured bubbles at a party. Meanwhile, there's only so much beard scratching I can do before my face falls off. 

my actual face

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 & Admin

Today's story, friends and neighbours, is 'How To Crush the Soul of a Special Needs Parent'.  

Recently, I lost my Carer's Allowance and had to make a phone call to see if I was still eligible for Carer's Respite Grant.  This is how it went.

I dial the number.

An automated message kicks in.  In Irish.  The length of the message makes me wonder if I misdialed myself into a gaelic version of Homer's Odyssey.  I don't speak Irish so I can't be sure.  The only thing I can do in Irish is to ask permission to visit the toilet, or invite someone to kiss my arse.  These are both useful phrases tbf, but of little utility for today's purposes.  

Finally I get an option to select English.  I can only guess that the robot-man repeats what he has just said in Irish..... something involving websites and recording.  It bumbles into an incoherent drone after about 15 seconds.  As a numbing agent, it could be of use in anaesthetics in lieu of medication.  I feel nothing but the pressing urge to sleep with immediate effect.

I keep myself alert by gazing at my reflection.  I think I can actually see myself aging.

Eventually, the robot-man (who seems to have confused his job with reciting a twenty-seven verse lament), begins to list The Options.  Of which there are roughly 4000.  I am bored by the third one.  I consider making tea.  Then I worry that my tea distraction caused me to miss my option.  I experience a disconcerting mixture of panic and apathy.  My brain implodes a little.  I definitely should have made tea.  I select the option for the operator.  The line connects and makes what sounds like mating noises with another line.  I feel voyeuristic and a little icky. I want to have a shower.  Then, I feel a flash of excitement as the line makes ringing tones.  It clicks into life.

The automated message begins again.

The darkness of coma presses the edges of my awareness.  It is madly seductive.  But I have survived surgery, illness and three labours;  I can endure this.  Finally the message ends.

Then the "music" starts.

Self-harm isn't really my thing, but I wonder if pouring bleach in my ears would lessen the pain.  I really wish I had made tea.

Then..... result!... an actual living, breathing human being answers the phone.  Except I quickly become mistrustful of the living, breathing bit.  "Hello"  he wheezes.  With an optimism I don't truly believe, I explain my query.  Silence.  I fear the effort of speaking may have killed him.  "Hold on" he finally rasps.  My relief that I haven't murdered him is short lived, however, as once again the lines make their robot sex noises.  

The automated message starts again. Then the music.  I consider sticking my hand in the toaster to defibrillate my fading heart.  

But..... joy of joys!.... another human answers.

"Housing benefit" she says.

My life flashes before my eyes.  I focus on not looking at the light.  I'm not ready to die yet.  I explain my situation, weak with hope that maybe she can help me.  "Hold on" she says.

I now have new respect for the term 'hold on'.  It's more than just an invite to brace yourself for a few moments of drifting in cyber-void.  Really, it's a grim warning to cling to your sacred soul as the life-force is bled from your veins.  Underestimate it at your peril.  

More pornographic connection noises.  The automated message reanimates.  I bury my face in my knees.  My daughter comes into the kitchen, makes herself tea, gives me the middle finger and runs away laughing.  I deeply regret my decision to reproduce.

My eyes glaze.  Outside, it starts to rain.  I feel myself being lulled to sleep.

But..... miracle divine!.... another human.  She asks for my mother's maiden name as a security question.  I am convinced this is some kind of sick test.  At this stage I struggle to recall my own.  

I dredge up the required details from the porridge between my ears.  The human is satisfied and agrees to send me out a form.

I collapse, make a small vat of tea and plan revenge on my reprobate daughter.  I have survived another Trial of the Special Needs Parent.

Carers in Ireland save the government roughly €10 billion per year.  It is means tested, but not only on my loss of income due to giving up employment to care for my autistic son.  The salary of the person I happen to be married to is considered to be my income.  The unfairness of this is sickening, but most of us are too exhausted to take the government to task over it.  In a weird Alice in Wonderland logic, we are penalised for working and paying tax.  It would be funny if it wasn't real.  

 

Autism & Adult Services

We are deep in the trenches of planning Finian's transition from school to adult services.

We had another meeting today to try to shuffle things forward an inch or two.

It's tiresome, and built with a matrix of uncertainties and wait-and-see's.  So far, though, no-one has given us the bum's rush out the door.  I'll take my positives where I find them.

All the professionals we meet are lovely.  I have no doubt that they are all fighting in Finian's corner.  It's not the people within the system who turn the road into treacle.  It's the system itself.

Our already complicated lives are further perplexed by having to repeat the same information to multiple teams, multiple times.  I lost track of which team serves what purpose ages ago.  When you're preoccupied with raising a special needs kid, extra layers of red tape tend to get lost in the haze.

The process is arduous and anxiety-laced.  This is bearing in mind that, as supports go, parents are not all placed on a level playing field.

It is with something close to guilt that I'm aware I have the support of a great husband, close friends and dear family.  We can comfortably manage to pay the mortgage and put food on the table.  We have the benefit of education to help us navigate the criss-crossed waterways of disability services.  Finian is as healthy as a grass-fed ox, with no extra conditions tangled up with his autism.  Our older 'kids' are thriving, (almost) independent adults.  

And we find it draining.

I find myself thinking about the parents who start out on the back foot.  The single parents.  The ones who worry about paying the rent.  The ones who sweat at the supermarket checkout in case their card is declined.  The ones who struggle to comprehend the layers of bureaucracy-speak.  The ones managing two (or more) special needs kids.  The ones struggling with their own health issues.  The ones who carry the weight of tube-feeding their children or injecting them with insulin.  The ones who cry themselves to sleep with lonliness.  The ones sporting bald patches where their kid ripped plugs of hair from their scalp.  

I'm not diminishing my own experience, but the balance of good fortune is tipped in favour of some.

While I'm deeply grateful for the supports I have, it's kinda crap knowing that not every special-needs parent has these.  

Unfairness is part of life.  But that doesn't make inequity any easier to bear.

Autism & Murdering Trees

Yesterday I woke up with the intention of  working on an assignment, but I ended up murdering trees instead.

Tree genocide (in the form of wasting paper pointlessly) is not something I'll proudly add to the Achievements section of my CV (it's surprising that so many agencies still use paper in this digital age).  Tbf, if I'd dealt with the growing mass of forms a bit sooner, it wouldn't have become such a big chore......  but it's nice to have something to complain about.

I was kinda hoping that if I ignored the forms long enough, they'd disappear, or maybe even complete themselves.  But they sullenly remained un-disappeared and un-completed.  Anyway, it reached a tipping point where I was either gonna have to change my identity and flee the country, or put on my Big Girl pants and dive in.

So I dove in.

I completed a form reviewing my Carer's Allowance (€39 per week to spend wantonly as I please).  The paperwork required for this alone is eye-watering.  They wanted hard copies of three months of bank statements (approximately 8000 pages) and my husband's payslips. I can still hear the trees screaming.  More worrying though, is the prospect that they'll further cut my allowance.  How will I maintain my lavish lifetsyle?  I may have to find a sugar daddy to keep me in Bollinger and Lacroix (sorry Husband Dear, but I'm being penalised for you working hard.  What's a girl to do?).

I booked my NCT.  Next appointment available is August.  Wtf.

I filled out a tax form for the dentist.  The same form I fill out EVERY visit.  Sigh.

I started a form applying for adult services for Finian.  It cunningly tricked me into a false sense of security with its apparent simplicity..... until I realised that I need to catalogue 17 years worth of schools, services and hospital admissions.  I literally can't remember what I did 2 hours ago.  The ink may now be unreadable due to my bitter tears.  Hate that.

I booked a smear test and ordered prescriptions.  Disappointingly easy.

Then I tackled Finian's prescription sheets for respite, which now need to be taken to my GP, collected in a few days and then returned to the respite centre.  Reassuringly complicated.

All powered by a triple espresso and a family-sized bar of wholenut.

As a great philosopher once said, what a load of bollox.

More strangers know my PPSN than friends know my phone number.  

I could have spent a happy morning eating doughnuts, judging dysfunctional families on Say Yes to the Dress, or buying impractical online fuckery.  Or doing responsible parenting stuff, obvs.

Wasting time, energy and resources, repeating the same information to the same people, makes the Trials of Hercules look elementary.  He'd tap out in five minutes of being a special needs parent.

the trees are screaming

Autism & Assessments

Now that Finian is in his final year at school, we're going through the process of figuring out adult services for him.

Progress is slow.

The lack of certainty is anxiety-inducing for him.  We can't tell him where he's going or what his day will look like.  We can't tell him how he'll get there.  We can't tell him who he'll be spending his time with.

His need for reassurances that we can't give him is exhausting for us.  I can only imagine what it's like for him.

The wheels are in motion.  Emails have been sent to faceless people with officious job titles.  We've already had meetings with psychiatric services and occupational guidance services.  We're awaiting a cognitive assessment.  We keep hearing "it takes time".  They're not wrong.

His assessment of needs was tough.  The man who carried it out was kind and sensitive, but it was impossible to sugar coat his level of dependence.  To us, Finian is our funny, sweet, infuriating dynamo.  To disability services he's a set of deficits.  

I understand it's nothing personal.  They need to score him to match him with services.  I guess that's the hurtful part of it...... it's nothing personal.  Charts and checklists miss the beautiful, surprising soul who makes me my Best Self.

It's intriguing that difficult, sometimes painful, processes can help us to grow and see life through a clear lens.  His simplicity and lack of falseness are traits to aspire to.

It's a strange system where humans, especially vulnerable kids, can be reduced to a number on a score sheet.

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