Change = Anxiety = Implosion

h2au-anxiety-implosionLittle Miss H is having a very tricky week (And it’s only Tuesday!)
We’ve had to miss ballet this evening as a result and she’s not coping brilliantly at all. She’s currently decompressing with her “tool kit” of sensory toys. She’s been incredibly erratic changing from argumentative to tearful to quietly angry and I’m exhausted, so goodness only knows how she must feel. It’s different from a full blown explosive, aggressive melt down, it’s more an implosion of anxiety.

It is all because her teacher and the usual substitute both of whom she knows well and trusts, are both off ill. As a result both yesterday and today she has unexpectedly had a different teacher. It’s someone she knows (and likes) at the school but hasn’t been taught by before. This change has caused her immense anxiety and this prolonged build up has culminated in this implosion. It’s involuntary and she can’t control it. Yes it seems irrational to me, does that frustrate me? Absolutely. Does that matter? No. I can not let my frustration inform my reaction. It does of course because I am human, but I do my best to count to twenty and mutter under my breath behind the cupboard door to enable me to be patient with her. I vacillate between calm and sympathetic to irritated and impatient. Which in turn leads to me feeling guilty and defensive. You see I am tired, sleep deprived and poorly so this reaction and the resulting unpredictable behaviour from her have me like a cat on a hot tin roof. Furthermore some of her calming toys are noisy and with my headache they are driving me nuts!!! Obviously I can’t react so here I am, telling you lot about it, hoping you won’t think I’m horrid for not just being a bundle of sympathy for my blessed child. Obviously I’m sympathetic but I’m nearing the end of a frayed bundle of nerves I think…

To really add sprinkles to the cherry on top, the teacher she currently has needs non-contact time tomorrow so it means a further teacher is coming in. It is a teacher she has heard of but doesn’t know. She doesn’t even know her name and is beyond worried about it. This has tipped the balance and she now can’t cope with it all. She’s anxious about every aspect from uncontrollable variables to things that just wouldn’t cross my mind. I’m so impressed with her that she is now able to (partially) vocalise her concerns but she doesn’t at school and it all comes out at home.

I’m not convinced I’ll get her to school tomorrow but it’s bedtime now and I’m not even sure she’ll get much sleep, so we will cross the school ‘bridge’ tomorrow…..

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Whatever Works!

‘Whatever works’ is my parenting philosophy.  In fact I’d say it’s largely my philosophy to life… now!

Parenting Little Miss H has taught me that.

I’m adaptable, can fly by the seat of my pants and I make it up as I go along!

I’m instinctive and I am intuitive.

I’m dynamic and a do-er.  I’m more action than talk and I am not a ‘worrier’.  That is not to say I don’t care, I just don’t waste my precious little energy on ‘worrying’.  I act on what needs action and deal with facts rather than what-ifs.

Again that is not to say I don’t address future possible scenarios. Of course I do, I just don’t dwell on them.

I try to listen to my inner voice.

Drowning out all the external ‘noise’ can be jolly hard. Especially in this modern age of parenting where there is a book for everything, an expert on everything and too many people who feel entitled to an opinion about everything and everyone else’s lives.  I feel listening to our instinct is being culturally drilled out of us, parenting is prescriptive now and in Scotland at least, if the current government had its way, it would be state led too.

On the whole though I succeed on hearing my inner voice even if there is the odd occasion when I don’t act on it.

These traits have led me to be quite creative in my approach to parenting.  I’ve had to be.  Autism has made me react rather than prescribe.

Don’t get me wrong I am very traditional in many ways and please don’t mistake creative for airy fairy and wishy washy.  Little Miss H needs firm boundaries and assurances, there is no room for vagary in my parenting of her.

Little Miss H says I’m strict, I think her friends may think I am too.  I have high expectations of myself and of my girls.  Realistic but high.  After all, as the saying goes, if you aim for the moon and miss, you are still amongst the stars.

I stretch them and I support them stepping out of their comfort zones.  We have a hard work ethic.  We have needed it with all the therapy we have had to incorporate into our lives.  We are results driven and ambitious.  That, I believe is why Tiny Miss H can walk despite her prognosis.

Mr H would say to me “you’re Scottish, you’re feisty”, I say that’s no bad thing!

Parenting Little Miss H has taught me that traditional parenting or what’s called ‘parenting as normal’ (rewards/sanctions) is often not suitable for children on the autistic spectrum.  Their impaired social imagination means that they can’t envisage the day ahead for example the way a neuro typical (NT) brain automatically does.  This means that a feeling of being lost and confused drives their behaviour in pursuit of predictability – safety.

Autistic children have to be explicitly taught many things that are just picked up naturally by an NT developing brain, one example is personal space, an unwritten social rule that NTs ‘just get’.

This explicit translating the world and teaching of unspoken rules not only takes more parenting  and takes more out of you, it takes more out of them as a child.  Every minute of every day, autistic children have to work at understanding the world around them.  They can’t just ‘be’.   Little Miss can’t just be an 8 year old girl, she has to work at being an 8 year old girl, consciously thinking about what to do next, translating each scene she is in to figure out what she is expected to do next. Like acting a part, playing a role but without a script or screenplay.

Autism is context blind which means that she can’t generalise her experiences so each situation is a new situation for her.  She is building a bank of experiences like a library to call upon next time, but each one is only useful in the future if everything in the new situation is the same as that in the banked experience.  An NT child could pull up a mental picture and expectation of what the day would entail from that bank if we said we are going to a park, whether they had been to that specific park or not.  The reality would be close enough to the mental picture they imagine in that it would have play equipment, some grass etc.  Little Miss H can’t pull up that mental image as a generality.  She needs the exact input of what that park looks like.  What play equipment, what the slide looks like (colour, number of steps etc), how many swings there are, the layout etc etc.  Without this exact information the anticipation of the event is very stressful for her.  The reality once you get there is often more successful as she feels safe again.  This is the crux of the issue with transitions in autistic children.

Imagine being told you are going somewhere.  No details.  You just have to follow blindly and have faith with zero information about what awaits you.  Imagine then arriving somewhere you’d never been before and you didn’t know what you were supposed to do or how long you were going to be there.  You’d feel pretty uneasy too.

Well that uncertainty is what drives much of the behaviour in autistic children.   Add in the sensory element and you can see where problems arise.

This is why often the promise of a reward falls on deaf ears as they can’t generally visualise it anyway – even something positive causes anxiety so it isn’t a motivator.

The threat of a sanction eg confiscating screen time again isn’t something they are projecting forward to and imagining being without so behaviour modification is not achieved.

Every day I have to modify my interaction and parenting accordingly and this takes conscious effort and I can’t just react, I can’t just ‘be’.   I have to consciously think about everything we as NTs, normally take for granted.  I have to work at every day – translating it and explaining it, planning for it, pre-empting it and teaching it.

This process (of learning that many traditional aspects of ‘parenting as normal’ aren’t suitable) has resulted in us doing things our way and that’s OK.  We’ve had to make it up as we went along.  Each situation presenting a new set of criteria to figure out.  Trying to adapt the environment or situation sometimes is more successful than trying to address the behaviour itself.  Creative approaches to managing behaviour and redirections often take place instead of rationalising and using the behaviour as a lesson.  It might look like we are doing it ‘wrong’ but for us it’s right.

We might not reprimand when someone looking in feels we should.  We might not manage behaviour in a way that people think we should.  We might seem to let her get away with stuff.  We might do our thing, our way.  We might appear unnecessarily strict.  We might appear to be a kill joy by stopping an activity seemingly prematurely, we might not let her join in stuff that she seems (at that moment) desperate to do.  We might seem to be forcing her to do stuff that she seemingly doesn’t want to do.  We might appear to contradict ourselves.  We might appear to be ‘over rewarding’.  We might appear to be oblivious to stuff.

There are reasons behind everything we do.  A lot of work has gone into the way we do things.  There are days of trying every other way.  There are nights of sleeplessness from where we have got it very wrong, there are bruises from making a mess of it and there are bruises from doing it right.  There are oceans of tears from unsuccessfully doing it other ways.  There are rays of sunshine from the days it all works.

We do whatever works and that’s OK.

The Stuff of Our Life – 17th June 2016

The Stuff of our Life.

 

Two nights ago we were woken at 2am by a very distressed Little Miss H.  Being awake is not unusual for her.  Being anxious is not unusual for her.  But this time seemed different from usual.

She was very upset about burglars.  We are incredibly lucky that so far, touch wood etc we have not been burgled, so in our groggy state this seemed a random and nonsensical thing to be SO upset about.  Where had it come from?  What was this all about?

Having eventually settled her back to bed the rest of the night was relatively painless bar the 5 o’clock wake up call but again that’s not particularly unusual.

But the interruption of sleep has a knock on effect.  Of course it impacts on Little Miss H despite her being acclimatised to her own sleep requirements, which by the way do not match mine!  But worse, it impacts on my health – I’m stiffer than normal, I’m sorer than normal and I’m foggier than normal – this then impacts on everything (and therefore everyone) else for the whole day;

I had to climb the stairs (3 flights) at nursery which shouldn’t be a problem but when every joint in your feet and legs hurt, it is like climbing Mount Everest (I imagine anyway!).  Thinking on my feet during a meeting with OT, having to think about all the equipment required for Tiny Miss at school for the coming year whilst having brain fog is trickier than it sounds.  Racing around to appointments, concentrating whilst driving in the fog and rain, lifting Tiny Miss (nearly 20kgs worth of 4 year old) who is beyond exhausted and less than compliant, standing to cook tea for tired hungry children, lifting saucepans when I have no strength in my arms and the numbness in my hands means I could drop them at any minute.  It wouldn’t be the first roast or pan of boiling water dropped on my kitchen floor due to my disability.  All whilst the pain in my arm is screaming as though I was lifting a boulder the size of a car, fighting a cramping stomach because I snatched the leftover crust of their toast for my breakfast and my crohn’s is complaining that I made a duff choice,  all whilst little, sleep deprived, grumpy people are refusing to do homework, demanding things from me every 2 seconds when all I want to do is sit down and stop hurting.  It pushes my patience to its very limit.  Mr H will have to make his own supper as I won’t manage to cook anything else after dealing with the girls’ tea.

Yet I still don’t know why ‘burglars’ interrupted our night.  Coaxing information out of Little Miss H who is demand avoidant is tricky at the best of times, trying to understand her story telling is the other challenge. So coaxing the info from her whilst trying to decode what she is telling me has become an art form.  Her lack of social imagination and impaired theory of mind means that she doesn’t realise I don’t hold in my head what she does in hers.  I don’t have the memory of her day so I can’t begin to guess, but she assumes I know who she was with, what they were doing/playing and how.  Stories start half way through with ‘he’ and ‘she’, rather than names or scene setting.  In itself it’s hard work gleaning information from her but when I’m tired, sore, distracted and impatient it can be even harder but we work at it and we generally win (ish).  So using my best patience and encouragement we got to the bottom of the burglar concern.

A group of them had been playing a game in the school playground which was something to do with burglars.  That’s the extent of my knowledge but it’s enough to deduce what is worrying her.

I am thrilled that she has friends.  I am thrilled that she plays in group games.

But I do feel so sad for her that her literal brain carries this information beyond the playground and it interferes with her life.

It’s happened before, for example when she became petrified of ghosts.  The sleepless nights lasted for weeks before we got to the bottom of it.  An automatic air freshener in the toilets at school squirts its mist out periodically and the story went around that it was a ghost.  There have been other instances and it’s always something surprising and usually something that her peers wouldn’t be overly concerned by, at least not to the extent that it impacts on Little Miss H.

So teatime last night was a warning bell to me.  She ate a huge amount.  She eats when she is anxious so I was aware something was going on but she was otherwise calm.

Thinking her concern was related to her previous night’s dreams, we made plans before bedtime about what we would do if there really were burglars and dealt with her worries.  We did brilliantly, even if I say so myself.  Her anxiety was well managed and she was calm.  Bedtime was smooth.  I was proud of us.

Tired and in pain I went off to a mindfulness session which I use to help me relax and focus and which I love.

I got home exhausted, very sore and really ready to sit down.

Little Miss H walks in groggy and confused.

Me: “Hello darling, what’s up?”

LM: “I wanted to ask you a question”

Me: inwardly rolling eyes thinking ‘seriously? I haven’t even sat down yet’ but I smile, put my arm around her and repeat “OK, what’s up?”

LM: “well, I think I might have been sick”

Me: *action stations*

A huge amount of stinking, putrid vomit is on her bed, carpet, seeped into the drawers under her bed etc – so dealing with her puking, whilst cleaning up the lumpy half-digested remains of her (enormous) dinner, changing bed linen, changing duvet, cleaning the carpet, changing her nightwear all whilst every joint in my body is on fire pushes me to the brink of vomiting from the pain myself.

Mr H does his best, he races round fetching me things to help me clean up (as I can’t be running up and down the stairs) but he can’t enter the bedroom so I’m flying solo.  His sensory processing means all smells like vomit are too much for him and all personal hygiene sounds are beyond his tolerance level.  Brushing teeth noises are bad enough but puking and retching are beyond his limits.  When the puking resumes I send her to the bathroom and then with his jumper round the lower half of his face in an attempt to mask the stench, he stands there gagging, arm outstretched behind him, holding her hair out of her face, whilst she’s bent over the toilet.  He supresses his sensory challenges to cope with our daughter’s plight.    He surpasses my estimation of how much he’d be able to cope with.  He surpasses his own!

The bedroom ready for her to lie back down, I’m dizzy with pain from the exertion of bed changing and carpet cleaning.  I stumble back down stairs to sit a minute whilst Mr H takes over and settles her into bed.

My pain is not abating and a poorly child means another night with interrupted sleep.  Every cough has me on tenter hooks and when she’s sick again I can’t easily leap out of bed, so I have to wake Mr H.  (How does he manage to sleep through all the noise?!)  So another night of us all being sleep deprived.

Today my hand is swollen from the pressure on it from scrubbing the carpet.  I’m stiff, sore and burnt out.  Everything hurts.  Paperwork has now gone undone for another week as my brain can’t organise itself when I am this tired and I don’t have the headspace to stop and think.  I had both girls at home today so I couldn’t just stay in bed to rest and recover.

Mr H gets home from work tired after a busy day and sleepless night.  He not only has to cook his own dinner tonight but he has to shop for it first.

It’s an endless cycle.  Sometimes I just want to get off the merry-go-round.  ‘I’ll sit this one out’ I think to myself, but illness is not optional, parenting is ongoing and the challenges are relentless.

I’m not complaining.  I’m just explaining.  It is just the stuff of our lives.