Anxiety vs Avoidance – As a parent how do I know I’ve got the balance right?

The burning question I always have as a mum is how do I know I’ve got it right?  How do I know my decision is the right one?

My daughter’s autism manifests in many ways but one of the main ways is anxiety.  She has enormous trouble decoding the world, processing the information and coping with change.

She can’t explain herself and self advocate when she is experiencing stress and it’s always with hindsight that the facts come out.  While she is experiencing stress she is in survival mode and doesn’t even recognise she is stressed until the stress stops.

This goes some way to explain how she holds it together at school and appears ‘fine’ and sometimes appears better than fine, she’ll be laughing and engaging but still comes home to fall apart.

This week has been so hard for her with staff illness and absence meaning unexpected substitute teachers.  Her week is not going to plan, it’s unfamiliar and the level of stress it causes impacts on everything.  She came home from school last night subdued and tense.  She was pale and clammy and being winter I suspected a bug, I took her temperature and it was normal.  She was not unwell, she is just exhausted and drained from the emotional toll of all the changes.  The evening was erratic, she was vacillating between tearful and angry, she was refusing school the next day and  refused to go to ballet that evening.

I decided to allow her not to go to ballet this time.  I usually push her outside of her comfort zones and insist she sticks to her commitments.  It was her choice to take up ballet and she’s really good at it, she has just achieved a high merit in her exam and was really (rightly) proud of herself. This term every week she’s tried to get out of going to class and I’ve not caved once.  It’s exhausting always battling and cajoling but it’s the right thing to do and furthermore we’ve paid for it, so she’s going!  She can never explain why she doesn’t want to go and I can’t get to the bottom of it so, commit she must.

After all the school changes this week however I felt that rather than fight that battle I’d keep her home and let her rest and hopefully increase the chance of her managing school the next day.

All evening her stomach was churning with anxiety about the following day at school.  A totally new teacher she has never met is taking them and this is all too new.  There are too many unknowns that haven’t been planned, prepared and practised.  It’s overwhelming for her.

She woke up this morning claiming illness.  It’s really avoidance.

My main aim is to get her to

  1. Correctly identify what she is feeling
  2. Correctly describe/label what she is feeling/experiencing

We have spent a lot of time talking about ‘the little boy who cried wolf’ over the years, we’ve read the book more times than I can count.  On an academic level she understands the concept but she is not equipped to manage putting it into practice.  So every time she experiences anxiety she claims illness.

She is eight years old.  Now is my time to teach her to recognise what her body is telling her.  To teach her how to self advocate for that.  To teach her that she will be believed when she says she is  feeling anxious and that it’s nothing to be ‘embarrassed’ about [her words].  It’s our chance to prove to her that she will be respected for the recognising her feelings and limits.  It’s our chance to nurture her, to build her into a strong person who can identify and manage her body’s signals.

We also have to be careful not to be manipulated every time she wants to get out of doing something for any reason other than her crippling anxiety.  She’s very bright, she’d make the connection and employ the tactic if she felt it would work.

So, as a mum, how do I know when to push her and when to nurture her?

Mental ill health in young people is on the rise.  The amount of pressure our children are under is at an all-time high and is in some cases damaging their psyches.  The amount of help available is minimal as the NHS mental health service is at crisis point.  Prevention is better than cure, especially when ‘cure’ relies on patchy service availability.

Autistic girls are a particularly vulnerable group and I’m very conscious of that.

Am I harming her or helping her by pushing her out of her comfort zone, by making her go to school?

What is the right answer?

I’m so proud of her, that today, with my and the school’s help she managed to go in.  I managed to tread the fine line of ‘coaxing without demanding’ well enough to get her to school and then with their help through the door, they are managing her transition into and through this tricky day.

Are they doing it right? None of us truly know.  Are they doing their best? Absolutely.

Am I worried that my daughter is suppressing her anxiety to meet expectations? Yes, very.

Do I feel conflicted about this? Yes, incredibly so.

Suppressing her anxiety is different from coping with it.  Suppressing it is quashing it, ignoring it and denying it which leaves it simmering deep down causing damage and delayed presentation.  Coping means addressing it, solving it, learning from it and leaving it behind.  It’s a fine line to find the balance.  How do I know I’m getting it right?

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What Autistic Adults have Taught me about Parenting my Daughter

h2au-q-to-adultsWhat Autistic Adults have taught me about Parenting my Daughter

As a parent to an 8 year old girl we have our share of frustration, cross words and clashes.  We also have a strong bond, a close relationship and enjoy each other’s company.  Obviously I love her more than words can say and am beyond proud of her (yeah, yeah – blah, blah, blah!)

I have noticed however that traditional parenting techniques are not always successful with her and whilst being ‘strong willed’ is one of many positive traits she seems to have inherited from me, there is more to it!  Another factor that adds a different dynamic to the relationship is that I am Neurotypical and she is autistic.  I am conscious that I don’t always respond to her the way she needs.

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In an effort to gain some insight into what I could do to improve my parenting of her, I turned to Autistic adults on Facebook and asked ‘what is one thing you wish your parents had known when you were growing up?’  This is what I learnt.

  1. To Recognise Her

Acknowledging she is Autistic is the first and most powerful message that came across.  To accept her for who she really is.  “The chances are she already knows she’s different” so giving it a name and recognising it is empowering for her.  Acknowledging her for who she is is vital.

Calling it something isn’t enough though – it is about recognising what it means. It is about recognising that;

  • She will be naïve, trusting and potentially vulnerable and that she will need love and protection even though she may not ask for it and even if it appears like she doesn’t
  • Autistic inertia* is a real thing, she is not being lazy, procrastination stems from a “significant emotional barrier” and to recognise that she will be struggling
  • She will need recovery time
  • “some kids need help making friends, some just don’t care”, she may not want to socialise and that’s OK, but if she does she will need to be guided
  • Her perception of reality will be different to other children’s/mine
  • Her sensory needs and desires and her routine needs will be different from mine
  • She is externally motivated, visual instruction and physical reward will be more effective than verbal instruction or verbal praise
  • With confidence she will work hard and achieve great things
  • She is different and not to “pressure her to be normal”

Something else that came up was “don’t be embarrassed to have a child that is different” – whether we mean to or not I think sometimes as parents we change our approach based on what setting we are in and that is often driven by the fear of what others will think.  This exercise has taught me to try not to care what others think!  (I will add that I have never been and will never be embarrassed by having a child that is different).

2.  To Respect that her struggles are legitimate and real. Respect that;

  • Transitioning IS hard, and to allow for that by giving enough time to switch activities
  • Crying is her way of saying she needs something but doesn’t have the words to explain, no matter her age
  • Interpreting things can be hard for her, even praise – she may not be able to tell if I am sincere, so I need to incorporate behaviours as well as words to show her what I mean. Model rather than order if you will.
  • She NEEDS alone time – that she needs and wants time in her room and not to force her to socialise
  • Respect her sensory issues – her reactions are involuntary. For example if she gags at food or a smell, it is involuntary not just her ‘being dramatic’ or ‘difficult’

One woman explained that she wanted her caretakers to understand that she wasn’t “highly strung” as they called her, in fact she was “baffled by life and society itself”.  Truly humbling to hear those words when you are neuro-typical, how much we take for granted.

3. To Teach her everything. Not to make assumptions that she will just ‘pick things up’.

  • To realise that she will be doing her best but that she will still want my help and guidance even though she may not ask for it and in the case of my daughter may actively fight against it!
  • She will need to be taught life skills
  • She will need to be taught HOW to do everything from wiping a table effectively to how to tidy up and organise herself
  • To break down every activity to smaller steps to teach her how they connect to each other – a bit like you break down dance moves to learn an entire routine!
  • To recognise that she is externally motivated so physical rewards are likely to be more effective than verbal praise alone
  • That I need to spell out my expectations and explain everything because she is not a ‘mind reader’
  • That if she appears ‘highly strung’ she is probably struggling to understand something
  • Avoid using sarcasm, rhetoric or hyperbole
  • To encourage and nurture what SHE is good at ‘not what other girls her age are doing’
  • Encourage her to take responsibility
  • Show her that she is valuable and perfect as she is and she is “not wrong to be different”

4. To be Available to her

  • Show her my unflinching love and support
  • To be patient and allow her time to fully process information
  • forgiving
  • Understand that when she is questioning me/things she isn’t being obstinate, she just needs answers
  • Show her I’m listening and really hearing her
  • To tell her I am sorry when I get it wrong

5. To continue Learning together as we go. I need to learn at each stage;

  • That she doesn’t need to be forced into Neurotypical behaviours
  • Not to compare her to her peers
  • Angry outbursts will be because I haven’t accounted for the steps above
  • Anxiety is a bully that overwhelms her and one that she is still learning to control
  • Her facial expressions do NOT match her inner emotions
  • I must watch, listen and learn who she is and not make assumptions
  • Find ways to deal with my frustration – in the words of one woman “I wasn’t trying to destroy my parents happiness”

 

Some of this, we as a family already know and do, we are fundamentally on the right track and mindful of doing our best.  The rest of this we need to remind ourselves and work harder on.  Much harder!

Having neurodiversity in a family is fabulous and challenging in equal measure for all of us. We won’t get it right all of the time but having the intention and motivation to at least try our best has to be good enough.  Then we can trust in the fact that ultimately her happiness will come from being her true self.

With thanks to the Autistic Women’s Association and other facebook users who answered the question!

*Autistic Inertia is basically a state of wanting or needing to do something, but being completely unable to do it, almost like a paralysis. (https://nolongerinabox.wordpress.com/2013/03/12/autistic-inertia/)

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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.

Welcome to H2Au: the stuff of our life

This is the excerpt for your very first post.

Welcome to my first ever blog post and my first ever blog; H2Au: the stuff of our life.

This blog is a personal story of our family’s life with Autism, a rare chromosome disorder and auto immune disease.

With this blog we are doing our bit to raise awareness.  We may only be one drop in the ocean but we will never see the tide of change unless we first create a ripple. Wishing for acceptance of all invisible conditions/disabilities is fruitless without first making people aware and educating them, so here we are to share our story.

What is our story?  Our story is of our family and our journey through life.
We are a family coping with lots of stuff. We live in Scotland, UK.

Let me introduce us;

I’ll tell you more about us another time but for now a brief introduction of our ‘stuff’.
Mr H is diagnosed with High Functioning Autistic Spectrum Condition (dx as an adult in 2013), ADD and Dyslexia.
Mrs H (the author) is diagnosed with Hypothyroidism, Crohn’s Disease and Fibromyalgia.
Little Miss H is diagnosed with High Functioning Autistic Spectrum Condition, Sensory Processing Disorder, a rare chromosome deletion, hypermobility, Select Mutism and has traits of Pathological Demand Avoidance (PDA).
Tiny Miss H is diagnosed with a rare chromosome deletion, Global Developmental Delay, hypermobility, hypotonia and Sensory Processing Disorder.

The interplay of all these diagnoses is complex and as much is ‘hidden’ or invisible, the struggle can be subtle and lonely. The aim of this blog is to raise awareness and acceptance of the very real issues that we experience.

I can promise that the story is raw, real, funny, sometimes sad, informative and hopefully inspirational.

Dive on in!