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.

“A Very Bad Day”

“It’s been a very bad day Mummy” was the phrase repeated continually yesterday evening after I collected Little Miss H from school.

Standing in the playground I knew it had been.  I could tell by her gait, by her facial expression, by the purple bags under her eyes against her too pale skin, by the sadness of her aura.  As she slowly walked towards me, scuffing her boots along the salted concrete of the playground, her eyes downcast, her hand up to her mouth chewing her sleeve and her water bottle hanging forlornly from her other hand, I knew we were in for a tricky evening.

I suppressed the urge to say “stop scuffing your boots” (do you know the damage the salt does to the leather?), or “stop chewing your sleeve” and instead just held my arms open for her.  She doesn’t usually like public displays of affection especially at school (“It’s against the rules to hug and kiss at school”) but I could see she needed some overt love.

She didn’t come into my arms for a cuddle but she was demure and allowed me to touch her arm.

Her water bottle had been broken that day and she was frightened she’d be in trouble.  Mostly though she was just sad.  Disproportionately heartbroken actually.  You see change is hard for her.  Saying good bye to things is really hard.  Her stuff is her portable safe space that she attaches so much love and importance to, it keeps her grounded so to have a piece of it broken is like someone throwing a brick through your window.  It is devastating for her.

Of course I reassured her that the broken water bottle could be replaced.  [No it won’t be the same one, it’ll be a new one but you can choose it.  No I can’t fix the old one.  Yes I know X person gave it to you for your birthday and yes I know it’s the fourth one that’s broken in however long. Yes I know it matched your pencil case and yes I know it was a ‘Frozen’ one].

With an unexpected burst of energy she was suddenly confrontational.  These shifts come out of the blue.

We were due to take Tiny Miss H to Rainbows and this was suddenly proving too much for her.

She was shouting at me that she didn’t want to take her to “stupid rainbows” and it wasn’t “fair”, that she’d “be bored” and why should she have to go with us just because Tiny had an activity…. And so it went on.  The real issue is she wanted her safe space, she wanted to hunker down after an exhausting day.

The challenge is enabling Tiny to maintain an ‘ordinary’ life, which includes after school activities, at the same time as supporting Little’s needs.  If anyone has the answer on how to get the balance right please let me know.

There isn’t an option, she is eight years old, she was coming with us, so with my arm wrapped tightly around her shoulders we walked towards the car.  The deep pressure, once she’s ready to let me touch her, is very reassuring for her and being hypo-sensitive she needs a very tight squeeze. So it was that I held her as firmly as I could with one arm whilst holding Tiny’s hand with my other hand and walking clumsily as if in a sort of three legged race, bags bashing against my shins, all of out of sync, we somehow managed to get to the car!

That’s when she said it “it’s been a very bad day mummy”

Chats in the car are usually the most successful; no expected eye contact, the crowd and melee of the playground has dispersed and we are away from the source of stress.

It turned out that she had been “mobbed” and crowded around at lunchtime in the playground and she didn’t have the ability to extract herself.  She didn’t know what to do, what to say, who to go to for help.  So stuck in the mob, she drowned.  She’s carried that with her all afternoon.

The physical toll it had taken on her was visible to see.  She was anxious, stressed and absolutely exhausted.

This on top of the broken water bottle made it “a very bad day”.

Within the 7 minute journey home she had told me it was “a very bad day” about twelve times.

This is echolalia, repeating herself is a form of stimming.  It helps her cope with anxiety.

When she has bad days we have a ritual which helps her get from the car to the house and that is a “Mummy squeeze” once in the kitchen – a prolonged super tight cuddle.  It physically hurts me she is so strong, but it is what she needs so squeeze away we do.  I feel like a tube of toothpaste being squeezed, I can barely breathe, she feels like I’m lightly holding her yet I’m using as much force as I can muster!  “It was a very bad day” she mumbles into my chest.

This helps her calm and from there I was able to persuade her that whilst Tiny was at her Rainbow’s Pyjama party we would go and choose her a new water bottle.

Meanwhile she’d also clocked the box of books in the hallway that we inherited a while back from cousins and I’d been storing in the garage.  Luckily they proved a timely distraction!  “It was a very bad day mummy” she muttered to the books as she rifled through the box.

We successfully deposited Tiny at her pyjama party but with all the distraction I had forgotten her cuddly toy and blanket…cue a mini tantrum from Tiny!

Finally extricating myself from the clutches of the Tiny tirade – I escape outside frazzled and on tenterhooks to persuade Little to walk with me to the butchers before going on to buy her bottle.  Reluctant to walk anywhere normally I was braced for the fall out but in response all I got was “It was a really bad day Mummy”.  She was so well behaved in the butcher’s that they gave her a fudge.  She decided it had been worth walking!  “Still a bad day?” with an eyebrow raised, “Mmm” she shrugged, “it’s getting better”.

h2au-fudge

On to the supermarket to buy her bottle, I managed to persuade her to make a practical and useful choice that would withstand at least some playground action without too much argument.  We’d been playful and chatty walking round the supermarket.  Things had turned around.  I was still on edge keeping it light, keeping her happy.  Then we bumped into Tiny’s class teacher who stopped to chat.  The transformation from playful and chatty was marked.  Little Miss went quiet and couldn’t make eye contact.  Out of the context of school, her confidence had melted away and her anxiety kicked in.  To a stranger this would appear as ‘shyness’ but it’s different.

Selective mutism is an extreme social anxiety that results in an inability to speak.  It is involuntary and more than simple shyness.  I’m proud though as she did manage to squeak something to me as the teacher was walking away.  Then straight back to being chatty with me once we were safely alone again.

At the till, the cashier told us the amount and Little Miss repeated it in various voices, over and over and over again.  Anxiety making her repeat the words.  Again, her echolalia.  The opposite if you like from selective mutism.  Still anxiety driven and not necessarily ‘appropriate interaction’.  I could see the anxiety ramping up so a quick distraction technique was needed.  Her forte is maths so I made it her job to tell me how much I still owed each time I produced a coin and that busied her brain but in between each amount she still repeated the total amount in a strange voice.  The cashier was so patient, smiling and friendly and put absolutely no pressure on her, instead only complimenting her on the maths.  The fact there was no queue and no one else around at that moment helped all of us enormously.  I didn’t feel stressed or self-conscious, and Little Miss just did her thing.

h2au-supermarket-sm-to-echolalia

Once back in the car she asked for water and I didn’t have any.  I, almost flippantly, suggested she run back in to buy some.  My genuine intention was to buy time whilst I was finishing putting something away in my bag before going back in myself but to my utter astonishment she said “OK”!

So…We talked about what she would do, where she would go, how to choose what she wanted, where she would pay.  We talked about the change she’d wait for, the route back to the car and the fact I would not move from the spot I was in.  We land marked where I had parked for her to reference it.  It was a HUGE amount of information we covered.

She hesitated. She took the coin.  She ran.  She went round the corner…… I watched and watched and watched, heart hammering and holding my breath until finally there she was running back with a bottle of water in her hand, a smile on her beautiful face, pride in her eyes and flushed cheeks to show for it.

She had gone round the corner to the door of the shop, walked in, turned right to the fridge, chosen still water (not flavoured, not fizzy, just plain , it’s all she drinks), she stood in the queue with two people in front of her and waited calmly (“feeling very nervous mummy” she told me), and when it was her turn the same lady recognised her and helped her through, I’m still not clear whether she actually spoke, but she waited for her change, and ran back to the door, turned left, round the corner and sprinted back to the car “7 spaces down” she told me.  Climbed in out of breath, heart hammering (or was that mine?), asked me to open her water and drank it.  “I’m so proud of you darling” I told her,  “I’m really proud of myself” she said.

SHE DID IT.  I smiled with tears streaming down my face as we drove to collect Tiny.

“It was a very bad day mummy” she told me at bedtime, “but it ended well” we said in unison.

A darker side of Autism

** trigger warning**

Below is a post from my personal Facebook timeline from two years ago.  I posted it not long after we’d moved up here to Scotland.

Those of you who have read past posts may be aware that we have had a struggle getting support since our move to Scotland.  That despite a firm diagnosis of Autism some ‘professionals’ doubted Little Miss H’s diagnosis.  They even accused me of making it all up.  We have been accused of bad parenting and emotional abuse; it was claimed by some that getting her diagnosed was emotionally abusive! (I’ll just leave that there for the moment but I have a separate post in mind about that for another day).

The fact that those accusations happened at all is beyond belief but when I look back at behaviours and manifestations that Little Miss H has endured and suffered through (and still does) it makes my blood boil that there is so little compassion (and support) for such a little girl who deserves to be acknowledged for who she is, specifically as an Autistic little girl.

It breaks my heart that a child would feel such anxiety that she’d pick her skin to the point it bleeds.  She has done it since she was very young but it had just dawned on me that what we were dealing with had a name.  That name is ‘self-harm’.  Obvious with hindsight I know.   At the time though it hit me like a sledge hammer, she’d been doing it since she was 2 or 3 and at the time of the post she was 6.  The impact this had on me was huge.  The realisation that this was a very real aspect of her autism felt overwhelmingly suffocating.

The fact that she felt anything strongly enough to drive her to the point of hurting herself made me feel like I’d let her down.  The panic I felt that I hadn’t previously done more to fix it or support her through this behaviour left me feeling substandard.  The fact I had ‘allowed’ her to feel so bad broke me inside.

Obviously we had tried many things to help her not pick her skin.  I thought it was partly sensory seeking behaviour and we tried many distractions and redirections.  I did notice it got worse with anxiety and we tried to deal with the anxiety itself rather than the behaviour.  It’s not like we had ignored it, been blind to it or not been pro-active about trying to help her.  It’s natural that I felt sad but why did I feel so bad, so guilty?

Part of my reaction was to force myself to acknowledge it out loud.  Part of my reaction was to share in case it helped anyone else and part of me wanted to educate others about the generality of this, so often unspoken, part of autism.  Part of me though just wanted to say ‘my poor baby is struggling, I find that hard and life isn’t perfect’.

So I shared on my personal time line.

I got so much support from many friends but was criticised by some too for talking about it so publicly.  How very British, to suggest I keep it behind closed doors.  I felt ashamed that I had posted about it when I was criticised.

I also realised then that Facebook served as more that a social media outlet, it was part of my support network.  I had moved to a new place where I didn’t really know anyone, was struggling to get professional support in place for all our needs.  Facebook was a world where people ‘got it’, so I resolved not to feel shame and to embrace the reality of our life.  I need the support network my ‘invisible’ friends give me.  (That’s you lot by the way – thank you!)

More though, telling our story may help someone and if we can make a difference in one person’s life, make one person feel less alone, then it’s all been for something.

So to those that find it triggering I’m truly sorry, please don’t read anymore and come back for the fun stuff elsewhere on my FB page later – hugs and strength to you.

To those who just don’t want to know scroll on by.

For those of you who want to learn, understand and support – the original post is below.

“So Little Miss H is a self harmer.  A horrible statement to make as a mother – I feel like I have failed her.  Her Autism causes her such anxiety that she hurts herself and makes herself bleed.  She is 6.  This in itself is sad enough but what breaks my heart is she now seems to realise that it’s not “normal” behaviour so she is now hiding it and lying about it. This further masks the problem that causes her to do this in the first place making it even harder to identify the cause and help her.
It’s no wonder that the average age for diagnosis of Autism in girls is 12, the professionals involved with Little Miss H still can’t always readily see her Autism manifesting itself and if she’s now hiding some of the most overt tell-tale signs how on earth am I going to get her the help she needs?
I feel like I am at the bottom of a hill….every time I try climbing the hill it turns out to be a volcano, erupts, pushes me back down and just grows into a bigger hill….. sometimes life is a bit of struggle here”

I’m thrilled to say that we are managing this aspect really well at the moment – she still picks when anxious but her self-awareness as she matures is helping us find other, healthier coping mechanisms/management strategies and her scars are fading.

We still don’t have support up here but I have learned that I am enough.  She needs me, I am here and I always have and will do my best for her.

To my brave, strong, amazing Little Miss, you are safe and I love you.  You will never have to walk through life alone.  I am so proud of you, every single incy wincy bit of you.  Thank you for being you, Mummy xox