A True Christmas Gift!

Kindness matters and so does perspective. Particularly at this time of year.

I don’t often get news from the day at school, but in the car on the way home today, Tiny Miss H proudly told me that she had a part in the nativity play.

A step up from last year when she was part of the crowd; ‘a villager’, so with excitement she announced proudly that she will be the Donkey.  We celebrated, laughing and happy for her, and thrilled that she was so proud.

Then she said something that made me cry.

“I was a King, but I swapped” she chirped merrily.

I know what you are thinking, most kids would be happy to be King so why did she swap?  Was it ‘taken’ from her for some reason?  Why?  How had this situation occurred?  Had she been duped into swapping by some other wily child?

After a short pause she continued;

“Freddie* was the Donkey and he was crying because he didn’t want to be, so I swapped”.

“Oh Darling that was such a kind thing to do.  I am incredibly proud of you….” I started but she interrupted, almost irritated at my apparent stupidity.  She queried;

“What?  Why wouldn’t I?  It’s what a King would do.”  As though it was the most natural thing on earth.

At that moment my tears started flowing.  I can’t tell you how proud that made me.

“Yes, yes, it is Darling.  It’s exactly what a king would do” I choked through my emotion, thinking ‘it’s certainly what a ‘King’ SHOULD do, but in this day and age, how many people do we actually know who would?”  (I’m very proud to know one!)

Her big sister, Little Miss H and I were explaining how you can be kind and generous without doing yourself a disservice.  We wanted to be sure that Tiny fully understood the generosity of her decision.  Little Miss H admitted she wouldn’t have given up the role.  Both the other Kings are Tiny’s friends and one of whom is her best friend, so to readily step away takes immense selflessness, or we worried, obliviousness.  Does she fully comprehend what she has done?  Does she realise that she can’t swap back?  It’s a one way move that I really don’t think many people would make.

Freddie will have the memories of standing proudly on the stage in a cape and crown, forever.  His parents will have their proud photos of their ‘King’ and will no doubt keep their momento programme with his name against the role ‘King’.  In that moment she built up a little boy whose heart was broken.

We explained how very kind it was, what a true Christmas gift she’d given to Freddie, because most people see ‘the Kings’ as really important roles and to give him hers is very precious.

“But so is the Donkey,” she almost shouted.  “Without the Donkey, Mary wouldn’t have gotten there and Jesus wouldn’t have been borned. So the Donkey is REALLY important!”

I asked why she thought Freddie might have been upset then at being the Donkey and she lightly stated that perhaps he was worried about being hot in the costume.

She’s thoroughly content in her decision.  She wanted Freddie to be happy and he is.  More  importantly to me though, so is she.  I will watch proudly as my Little Donkey with a big heart walks with Mary and Joseph.  And I will enjoy watching the three Kings deliver their Christmas gifts, privately knowing they aren’t nearly as precious as the one my daughter gave today.

Merry Christmas!

[*To protect his anonymity, Freddie is not his real name]

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‘Tis the Season

The anxiety is ramping up.

Little Miss H is leaving her communication book on my pillow each night.

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She’s crying after school each day, she’s not settling at bedtime.  She’s struggling and she’s micromanaging every tiny detail of the upcoming weekend.

You see Mr H and I are going to a party.  Well actually it’s a bit more than that, it’s a black tie ‘do’, I know, super fancy!  It’s being held at a hotel and we are staying overnight.

The logistics and preparation for this have been huge.  We don’t have child care on tap.  We have one family member who we can call on for occasional special events but their work schedule is such that it takes a lot of planning and preparation so we never do anything spontaneous and to be honest the girls wouldn’t manage that anyway.  We don’t have day to day help and we muddle along ourselves.  Mostly we’re cruising, Mr H and I are a great team and largely it’s a well oiled machine.  He carries a lot of extra on top of full time work because of my health and the girls’ needs and things can get a little bit chaotic and sometimes quite frankly it’s a diabolical farce!

But this weekend we have our trusted babysitter, Bee sleeping over.  It’s a first, so understandably the anxiety is building.  The girls have known her for two and half years and absolutely adore her.  She’s like a fun auntie/big sister to them but she’s mature, trustworthy and dependable so I am relaxed.  She young enough to be fun and get down on the floor with them but also old enough that she’s an adult and doesn’t take any nonsense from them.

I’m totally relaxed about it, I have no doubts at all and I KNOW all will be fine.

Little Miss H’s anxiety is breaking me though.  My heart shatters with each tear that rolls down her porcelain cheek.  With each quiver of her lip my ribs contract and squeeze my heart until it hurts.  With each anxious detail she tries to micro manage another stone forms in the pit of my stomach.

This should be a super fun adventure for them.  Instead Little Miss H has the weight of the world on her shoulders, even down to planning the menu and working out how long the pasta takes to cook for her tea.  At her age it never would have crossed my mind, all I would’ve thought was ‘great I can stay up late, eat chocolate and watch TV’!!

Instead my Little Miss at the age of nine needs all the details of every second, both for our itinerary and hers.  What is happening when.  ‘What happens if it’s all different?  Different from how you do it Mummy?’, ‘what happens if she doesn’t wake up when I need her?’, ‘will she let me cuddle her?’, ‘what happens if tea doesn’t taste the same?’, ‘when will you get back?’, ‘where will you be?’, ‘can we what’s app?’ , ‘I don’t want you to go’ and so on.

My Little Miss is a bundle of nerves and worries.  We have drawn up a plan.  She has a script.  She has had food cooked by Bee before and it was fine every other time I remind her.  Bee WILL wake up and always cuddles her whenever Little Miss allows it.  The things we know are true are uncertainties and doubts in Little Miss H’s anxious whirlpool of thoughts.

Tiny will be demanding and hard work but ‘fine’ until she’s too tired then she’ll be a tricky customer but Bee has experience of that so at least it won’t come as a surprise!

I need to relax on this night away.  I haven’t had a break for a year and that was one night away locally with my cousin, which was brilliant but not even 24 hours.  Mr H travels with work and whilst I know he is working hard while he is away, it is a break from routine, it is a break from the squawking, the screeching and the screaming, it is a break from the mundanity, the constant demands and the take, take, take.  It is a change of scenery and a chance to miss us and it is a chance to be him and be good at something other than parenting.  Yes, I know it’s not relaxing like a holiday but it is fortifying for the soul and the psyche.

I need a break from the routine, the stress and the demands.  I need to be me, just briefly.  I am Muuuuuuuummmmmmmyyyyyyyyyy, carer, teacher, nurse, chef, pot wash, taxi driver, administrator, advocate, arse wiper, puke cleaner upper, skivvy, maid etc all the time.  Just for one night I need to be ME.

Switching off is nigh on impossible when I know how anxious Little Miss H will be feeling and how avoidable it is and how I am the cause of it.  So, I have to lock that guilt away.  I have to work at having fun and switching off.  Because to be honest I won’t really switch off… I’ll just be masking, pretending and mimicking. The irony is not lost on me. That in itself is exhausting so I’ll come back even more tired and I’ll have the fall out of the change of routine to deal with.  It’ll take a couple of weeks to get back on an even keel but with Christmas coming that won’t be easy.

Do I get an insight into how it is for Little Miss H every day of her life?  Yes, I do.  Is it worth it? Yes, it is, not just for all I will learn about masking and mimicking but for the chance to (pretend to) be ME, just for one night.  The more I practice perhaps in time it’ll get easier and a night away will be the break I so need it to be.

Until then, I can’t wait to wear my posh frock and my glitter shoes, to eat, drink, dance and be merry.

I’ll raise my glass to you all and toast my night of pretending to be ‘me’!

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I’m not an Anxious Parent…. normally

Regular followers know that Little Miss H is autistic.  She is a master masker and the way her autism affects her is not always readily visible to others.  She internalises.  So a child who flaps externalises their anxiety or over-stimulation, Little Miss H has the same reaction to various stimuli but instead of flapping her hand/arm, her stomach muscles do the action instead so her innards clench and squirm, she gets extreme butterflies in her tummy and her heart beats faster, her reaction is private, hidden but no less there and no less real.

I can read her signs and can see the stress usually, but I am her mother and I know her well.  Others generally can’t.

She’s a master masker and it can take years to see the real her especially if you only see her occasionally.

We go to appointments and the moment the practitioner appears, her personality changes.  Her mood shifts and her behaviour alters.  She’s Selective Mute as well, so often she folds in on herself both physically and vocally – her head shrinks down in between her shoulders like a turtle’s neck retracting, her head tilts down and she barely looks up, she positions herself behind me or into my side and goes quiet, her voice changes, both tone and timbre.  Sometimes timid, sometimes gruff.  She becomes I child I don’t recognise.  I’m beginning to get familiar with some aspects of these sides of her and learning ways to interact with her when she is like this but it’s not something we get to practice as it only happens in certain situations which we can’t replicate so it’s not something I am familiar with enough to be the experienced confident mother.  I’m practicing on the job if you like!  Sometimes she’s compliant but shy, sometimes she’s aggressively resistant, sometimes she’s silent, sometimes she answers questions, sometimes she doesn’t tell the truth as she just says what she thinks they want to hear, sometimes she shouts, sometimes she whispers.  Sometimes she’s scared, sometimes she’s angry, sometimes (though rarely) she’s fine!

I never know which way it is going to go, it all depends on so many variables; who else is in the waiting room, time of day of appointment, whether she’s hot, hungry, thirsty, how her day has gone so far, whether the practitioner is a male or female, whether they are warm and welcoming or cool and professional, how they greet us, and so on…..  She can sense when someone is analytical rather than open and she feels on edge by that.

It’s not like she shifts into one single other persona that I recognise and am familiar with – her reaction is unpredictable and erratic and as a result I’m working it out as I go, whilst also trying to achieve whatever the appointment is about.  I’m testing the waters with my daughter as I go, walking on egg shells trying to prevent a meltdown, trying to focus on getting the important information across, trying to maximise the preciously short appointment time as any future appointments or help depend on this one achieving its aim….

I therefore can appear surprised, distracted and anxious – but that’s because I’m in the room with a stranger and as a mother to that stranger I’m having to make it up as I go along.  I’m thrown and I don’t know what is right.  If my ‘parenting’ in that moment is unsuccessful it’s because it’s all new to me and I’m feeling around trying to find what works.  It doesn’t mean I am a bad parent.  If I contradict my daughter it’s because I’m telling the truth and am not being dismissive or neurotic.

So to the practitioner I say;

If I speak to my daughter in a certain way, say certain words, try a certain strategy it’s because it HAS worked before – that’s why I look surprised and flounder when it doesn’t work in front of you.

I feel the full weight of your judgement on me.  I’ve been blamed too often for my daughter’s hidden disability so yes I am anxious when familiar territory abandons and fails me.

So please understand that if I appear anxious it’s as a RESULT of my daughter’s erratic behaviour and not as you so readily presume, the cause.

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?

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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