Autism & Playfulness

It's been a tough two weeks for Finian and, by extension, us.

He spent a fortnight screaming, sensory seeking, barely sleeping, avoiding food and needing constant reassurance.  It didn't pass the tipping point of self-harm or a full on meltdown, but we were worn out by the time his mood leveled out.

It's often hard to pinpoint a trigger for a mood change.  This time, though, it seems that his return to school was the guilty party.  In addition, some hormonal gymnastics were going on as he had an acne outbreak that looked like a medieval plague had partied on his face. Oh, and he was madly anxious about this being his final year at school.  So altogether it created a perfect stew to nicely boil his racing emotions.

It really wasn't fun.

Finian was miserable, tired and cranky and it didn't take long for the entire family to catch up with him. 

Absence of fun and joy can make living with Autism unbearable. We actually need to foster our own playfulness so that we can tolerate the difficult spells a little easier.  My husband and I consciously create opportunities where we can be irresponsible, carefree and a bit giddy.  We go on lots of coffee dates, hikes and  kayaking trips.  We cuddle up on the sofa, drink wine and watch comedies.  We spend as much time with friends as we can.

This is not with the intention of portraying ourselves as Barbie and Ken (besides, my boobs aren't perky enough and James has too much body hair to qualify).  We need fun so that we're not arguing over who gets the china in a divorce court down the line.

Having fun is serious business.

normal services resumed

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 & Self-Harm

 Self harming is one of the most devastating aspects of Autism to live with.

As a parent, I am hardwired to protect my kids from danger.  Yesterday I watched helplessly while my son raked his skin with his own nails,  screaming "MAKE IT BLEED!!!"   It was crippling.

Luckily we were able to de-escalate his behaviour before he broke his skin, but many times we can't.

I knew the meltdown storm clouds were gathering as soon as he woke up.  He was cranky and agitated.  His echolalia and sensory seeking were high.  He continuously repeated lists of cars that needed to be locked (a sure sign that his anxiety is high).   We engaged him in our usual calming tactics, but sometimes they just don't work. His agitation increased and he started looking for things to smash.  My glass of water was shattered and he searched for his phone so he could feel the release of breaking something of value.  I took him upstairs for a shower.  Then the screaming started.  He screamed so hard he gave himself a nosebleed.  He tore at his own skin with the intent of drawing blood.  

The fury and fear on his face was devastating.  

Eventually I coaxed him into the shower, which calmed him enough to reduce his self harming.  He continued to intermittently scream and cry for a few more hours.

The impact of my son self harming affects the whole family.  We are exhausted and anxious after each episode.  We second guess ourselves.  We wonder what signs we missed, if we were quick enough to intervene or if we are good enough parents.  I drank too much wine last night in an attempt to calm my nerves and spent today feeling hungover and flat (I've decided to give up drinking on the strength of this.  It's short-term relief but long-term makes things harder).

There are many reasons why special needs kids self harm.  It can be an attempt to regulate over- or under-arousal.  It can be part of particular genetic conditions.  It may be to escape a situation they don't like.  In Finian's case it seems to be extreme frustration with his difficulties expressing himself.  He has functional speech but can only reliably identify two emotions (happy or sad).  He has difficulty telling me if he's hungry or tired.  He can't tell me if something makes him scared or angry.  I am constantly trying to assess his emotional state.

We have used behaviour support plans with Finian's school over the years which have been really successful in reducing self injurious behaviour.  When he was younger, episodes were much more frequent.  But sometimes, the signs slip under our radar, or our calming methods just don't work.

Today we are recovering and re-grouping.  Finian remains agitated, but at a much lower level.  Witnessing your child self harming hurts the spirit of a family in a deep way.