But I Want To Do It!

There is an episode of ‘Charlie and Lola’ originating from the book by the amazingly talented Lauren Child called ‘I Can Do Anything That’s Everything All on My Own’. It depicts the stage when most little people twig that everything is being done to or for them and in response start to exert a degree of stubborn independence. Like Lola, L has wanted to be in control from…well birth really. She was 6 weeks early. Due date? No, no, no. I decide MY birthday thank you very much and I’m ready now!!! The ‘stubborn independence and resulting tantrum if not satisfied’ phase shows no signs of ending any time soon.

Pathological Demand Avoidance (PDA) is an anxiety driven avoidance of any demands (hence pathological) both real or perceived, placed on the individual outside of their control. This can range from getting dressed to using the toilet and everything in-between be it a ‘nice’ demand such as accepting a favourite food to a less attractive one such as tidying up a messy bedroom. However if we flip PDA on its head, and a PDA’er wants to do something of their own volition then there is nothing you can do to stop, prevent or reduce their need to carry it out. They are extremely impulsive and determined when they want to be!

L has to be in control of everything. From choosing the outfit she will wear for the day to opening every door herself to turning each and every page in her bedtime books. If someone else has the audacity to do it for her first then a meltdown will ensue in under 1/10 of a second. As a consequence we have many flash points throughout the course of a day. On a ‘bad day’ when behaviours and anxiety are at their peak life resembles the ‘Whac-A-Mole’ game you find at seaside arcades. On a ‘good day’ when life is calmer flash points can be extinguished by distraction, concealment, negotiation, pep talks, visuals, games or humour.

Like Lola, L has wanted to pour her own drinks for quite a few years now. She loves pink milk. I want her to have independence and am happy for her to try, the odd spill, waste or three cups used to make one drink doesn’t bother me (anymore). But when L is in a certain type of mood, the impulsive, focused at all costs, red mist mood she will want to pour out the whole bottle of milk until it is overflowing. She wants to tip all the squash concentrate into a cup and grip it with deadly steel if it is attempted to be taken away or moderated. It isn’t a drink anymore it is a power struggle and she is going to be the only winner. As soon as something seems to matter to me she will pick up on it and push even harder to prevent me ‘winning’. Traditional parenting methods might include disciplining the child with a firm ‘stop’ or ‘no’ or the item could be banned or the child could be given a time out for misbehaving.

These strategies do not work with PDA children.

Shouting or telling them not to do something will make them shout louder, lash out or break down in fear due to the raised noise and emotion levels. Banning the item will lead to negotiations of Brexit proportions continuing for hours, days or months on end and become a fixation from eyes open until they close. Time outs are met with violence, shouting or fear from a child with acute separation anxiety that you can no longer be seen or are close enough to them.

I’ve learnt that when raising a PDA child every behaviour or action is not always the child acting up for the fun of it. Strategies may seem controversial from the outside looking in as they allow the child to feature more evenly in the parent/child power balance. But there is a bigger picture. Anxiety, fear, anger and a complex wiring system in the brain all contribute to resulting behaviours. I’ve learnt a few strategies for using at home which may be L specific but have worked and if they help anyone else will be worth sharing.

Never try and win

Autistic people and some neurotypical’s with a vicious competitive streak cannot accept losing. By all means put on a fake nail-biting chase to a photo finish but always let the PDA’er win. Youre the adult its FINE to come second. Honestly. This will build up their confidence in the privacy of their own home and hopefully allow them to eventually accept losing in the outside world. If they are have a good day then tolerance levels can be stretched gradually but be warned! (Disclaimer as I parent an only child I cannot predict how this will pan out with siblings!)

Hold back

Assume the PDA’er wants to do everything first and always hold back allowing them the split second to take control first. This takes practice as it is instinctive and reflexive to do things that you have either been doing for the child since they were a baby or which are part of social codes and conventions such as politely opening the door for someone first.

Allow non harmful episodes to play out

We have a time old battle where L wants to eat snacks or sweets just before a meal and is like a dog with a bone until she gets what she has set her sights on. She climbs up cupboards, bites, scratches and growls until she exhausts herself there is no placating her. ‘Be tougher’ Im told by others but for me this doesn’t work. What I’ve found does work is stepping away, withdrawing attention and allowing the incident to play out. The shock of the dropped bottle or spillage is messy and annoying but it is the thing that makes the PDA’er stop. L likes to see the physical cause and effect and will then allow part of her rational brain to kick in and deduce that what she has just done wasn’t such a good idea. If anything is unsafe or a threat to yours or others safety this is not appropriate but for drinks, paint, food – fine

Hide anything meaningful. Well

I’ve learnt to attach little sentimentality to objects since having L as they tend to get stolen, graffitied or broke. Although it sounds extreme, if you have things that are truly truly special and hard to replace hide them so you can enjoy them to yourself. When I say hide I don’t mean in a drawer under your bed or in the back of a cupboard. Too easy! I hide things in the loft, inside bags in other bags high up or at my parents. This isn’t ideal but sometimes I just want to use an expensive notepad all to myself without having to share.

Humour

Always use humour to try and reset the atmosphere. A well timed burp or fart. A bit of slapstick. A fake parental injury can work wonders.

I’ve found that these have helped reduce the amount of red mist moments although on some days as I said earlier, NOTHING will work and I’m still on the lookout for ideas to use then so please send me any!

For more concise strategies from the proper professionals please visit these links;

https://www.pdasociety.org.uk/families/strategies

http://www.pdaresource.com/pages/strategies.html

 

AFTERWORD

This post has been really difficult to write because it was initially meant to be a positive, happy post but turned into more of an explanation post on the difficulties of PDA. PDA is difficult but I have written quite a few posts on the difficulties and wanted to go out on a high over the Summer and discuss something fun but it didn’t quite flow.

Much like life with a PDA-er!

I am mindful that summer is here NOW and I wont have time to do anything let alone write a blog post so I began to put pressure on myself to make it count and do a ‘good one’ which has been counter productive!

So this week whilst I’ve been trying to write I have also been trying to do too much in preparation for the school holidays and my own anxiety levels have shot up. I’ve had a very real insight into how someone with high functioning, perfectionist tendencies may operate and have been reminded of the many times at university where I would sit to begin an essay or project and procrastinate endlessly whilst trying to write something amazing, self berate, then panic that I would miss the deadline.

The whole point of the blog is to be enjoyable for me and therapeutic but I have began to over analyse everything I write and have either thought ‘that sounds so pretentious’ or ‘will anyone actually want to read this anyway!?’ It has sent me off on a downward spiral culminating with unhelpful thoughts that are buried deep in my sub-conscious that I occasionally allow to bubble up when I’m tired or low whispering ‘perhaps its not autism. Perhaps its just YOU’. So today I am just letting it go because the deadline IS here and I have done the best I can under the circumstances. It’s a bit waffly and shorter than I would have liked and i dont think i have done justice to PDA strategies so may need to revisit at some point but I did it and I am now going to concentrate on the most important thing. Bringing my own anxiety levels down before I collect L and begin the adventure which is Summer 2018.

If you haven’t been put off yet and are still reading I will be posting on Instagram over the summer @pdabubble  – the summer will be tough but one things for certain it wont be boring!

lola

 

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Pretty Little Things

I am many things to L. Carer, counsellor, chef, waitress, entertainer, dance partner, PA, social secretary but I am not allowed to include the title of hairdresser. By my own admission I am not a ‘girly girl’ and am rubbish at doing hair. L is a ‘girly girl’ and if she spies a beautifully coiffed fish tail plait from 20 paces will home in on the owner and want a closer look followed by ‘can you do that mummy?’ The answer is usually an emphatic ‘no’.

‘Can you do my hair like Pinkie pie?’ ‘Shes a cartoon!’

‘Can you do my hair like Sarah from school?’ ‘I haven’t seen her today!’

‘I want my pony tail to reach here (points to bum) when its done’ ‘Your hair isn’t long enough!

L is wise.

She has sussed that other mummies do their daughters hair well, better, more professionally. When we see my friends or other mums where she has seen evidence of plaiting prowess she will sidle up to them and ask if they can ‘do hair?’ If the answer is yes she is their new best friend. She will fetch her hair basket and sit as still as a statue with no shrieks, growls or furrowed brows whilst they brush and work their magic. ‘Like that!’ she will say with a flick of the head when she returns and showcases her new do. I nod through gritted teeth and know I will never be able to replicate this vision before me. If we skip a few hairwashes I think, it might stay in, it looks pretty tight.

I have tried. Many times. When I’ve done my best she will beckon a mirror over much like a pampered duchess and preen and scrutinise this way and that before arriving at her verdict. ‘That one is higher. Do it again’ ‘Not the orange hairband I said purple!’ ‘Its sticking out too much!’ On rare occasions she will look and the faintest hint of a smile will pull at the corners of her mouth and she will nod imperceptibly. No ‘thank you’s’ or ‘that’s just what I had in mind’ just a brief acceptance shared between us. This is what I feed from the other 99 times I get it wrong.

I would not be at all surprised if L becomes a hairdresser or make up artist, she has such a huge appreciation of all things pretty and loves to look at my makeup. So much so that I have had to buy ‘fake-up’ which is basically cheap make-up I leave lying around suggestively and if she then asks to use I will begrudging say ‘oh, OK then’ knowing that my nice stuff is well and truly hidden. <Evil laugh>

Her love of pretty extends to clothes and accessories too. I would go as far as to say that getting dressed up is her ‘special interest’. If she receives pocket money her first instinct is to buy new shoes. I will suggest all sorts of impressive toys to look at but she will firmly and resolutely repeat ‘shoes’. If this continues to teenage-hood I can anticipate the cold sweat of fear washing over me as she will be talking ‘Jimmy Choo’s’ not ‘George at Asda’.

I’m all for looking nice on a night out or a special occasion and have often enjoyed the getting ready (and getting tipsy) part of the evening more than the night itself but throughout primary school my wardrobe consisted of about two tracksuits, two T-shirts and two pairs of ski-pants alternated over the week. My age put me firmly in danger of being a shell suit wearer but I somehow managed to dodge that trend. Global Hypercolour T-shirts – not so lucky. L would have lapped up a shell suit. I’m picturing her in a neon pink and yellow one. Hell, she would have had at least two.

I see her as Carrie Bradshaw to my Charlotte York. She fearlessly embraces fashion and will coo and stroke the latest trends on the high street. A pink tutu, red fox tights and a pastel green Fedora yes please! Her sense of style is assured and adventurous. She has decided on what she is wearing since she was about 2 years old with zero co-operation in the dressing process otherwise. I am understated, conservative and recoil at bright colours. I pick safe and trusted combinations.

However, I have noticed that some of this enthusiasm has rubbed off on me. Ls consistent attention to fashion and looking nice has left me considering my own choices. Why don’t I make more effort? I dismissed looking nice as something I didn’t have time for once L came along. Everything was covered in food, sick or poo so what was the point really? I wasn’t going anywhere special and mums tend to dress in comfy rather than chic. Id still make the effort if I went out for a meal or special occasion but they weren’t very often anymore and slowly even my idea of ‘making an effort’ was a clean jumper as opposed to a pretty dress. I used to think that making an effort everyday was a huge waste of time and unrealistic – shallow even.

But L would pull me up on such laziness. If I had the same t-shirt and jeans on too frequently she would call me out. <assumes Regina George from ‘Mean Girls’ accent> ‘Oh your wearing that…again?’

It got me thinking…

There is definitely some method in the madness. Autistic girls and women tend to have lower self confidence and self esteem. They may compare themselves to others and can feel ‘lesser’ or ‘not as good’. It has taken me years to become more confident in what I choose to wear and I have never really experimented with different styles save a brief hippy/tie dye phase at 11 years old a la 90’s grunge. I would often buy things and they would spend their days imprisoned in my wardrobe because I didn’t feel I could pull them off. But with L, I am proud that she has strong tastes and I compliment her often on her choices and will tell her many times each day how amazing her glittery skirt looks or how swishy her pony tail is. I am careful not to talk solely about physical attributes and will also point out other people who look stylish or interesting as we walk past so she doesn’t get a big head!

SEN mums in particular need all the extra va va voom they can muster. If I have a meeting and I put on a nicer outfit and do my ‘full’ make-up I feel more professional and much like masking I can hide behind it and adopt a more capable persona. Self care is so important and making the extra effort, be it a clean top or a quick swipe of lipstick will little by little build up your self worth and self esteem. I defy anyone to disagree that when you make a little bit of an effort be it new underwear, a new dress or sparkly shoes it makes you stand that bit taller…it makes you feel that bit more confident. Therefore I am trying to address my black, navy and grey default setting and introduce a bit more colour into my life.

But definitely no shell suit, tie dye or global hypercolour. I draw the line there.

pretty.JPG

Mental Stealth

I really didn’t want to get ‘all political’ in my posts but I feel so strongly about mental health services that I felt compelled to write a post about them. Sadly I have a wealth of insider knowledge through experiencing mental health problems personally and now going through similar services for L. Time and time again I keep getting frustrated by how things are. Seeing lots of people in similar positions over the last few years obviously feeling as down trodden and despondent as I do, I realise it’s not just a small problem it’s a HUGE problem.

If I’m being honest, I was struggling with my mental health massively even before L came along. If life was being kind to me and I was on an even keel then everything was fine. However life doesn’t tend to be consistently kind. When big things came up such as going to University, then quitting University. Twice. Relationship breakdowns, friendship breakdowns, ill health, unsatisfying jobs I would be sent sideways off my suspension bridge of life with a wobble, fingers clawing at the edge of the bridge or a complete plunge down with a small dusty POOF at the bottom Wile Coyote style.

With the wonder of hindsight and the research and reading I’ve done around Autism for L I realise that a lot of my issues, emotional states and reactions point recognisably to common responses displayed by autistic girls and women. There seems to be a lot of media attention at present on a lost generation of women who have un-diagnosed autism and I can completely identify with that.

The apple doesn’t fall far from the tree.

However, unbeknownst to me in my teens and onwards I would keep worrying, ruminating and obsessing over what was wrong with me. Why did I feel so wrong, anxious and down most of the time? I didn’t need Facebook to tell me that other people were enjoying life more than me although I fear that I would have suffered so much more had it been around back then.

As I got to my late teens/early twenties I sought out help from various medical professions and although I was diagnosed with depression and anxiety at 17 nothing else really seemed to fit or provide a lasting solution. I was mentally fatigued from worrying so obsessively but appearing ok externally to everyone else. At times it would feel like I had a huge sign above my head for everyone to see saying ‘Fragile Mental State – do not startle!’ But no one noticed the sign. I couldn’t enjoy things that everyone else my age seemed to be doing, like going to the cinema or clubbing as I was always worried about the potential threats and disasters waiting to befall me. I would worry about getting home, if I was eating my popcorn too loudly or fear ‘getting started on’ by another girl and expend all my energy trying to navigate situations or control my thoughts. If one of my fears actually happened it would tip me over and I would go into panic mode, cry or hide under my duvet.

Alcohol would often act as lighter fuel intensifying my mood and probably 50% of the time I would come home from a night out and descend into floods of tears over perceived fears that I was boring, no one liked/fancied me and I felt left out. Alcohol helped quieten the worries for a bit but would then triple them the next day. Sundays would be spent hungover and mentally incapacitated going round in the same worry circles over and over. I can see very clearly now that some things I didn’t enjoy because they are just not enjoyable for me. I hate clubbing! I much prefer to sit and chat in a corner of a pub than doing laps around a sticky, dark sweaty room before becoming drunk enough to dance un-self-consciously. I still love the cinema but just don’t like having someone I don’t know very well sat close to me.

Over the years I was diagnosed with depression, generalised anxiety disorder, chronic fatigue syndrome, anaemia, Irritable Bowel Syndrome (IBS), vulvodynia, psoriasis, eczema, and sent to various kinds of counselling, Cognitive Behavioural Therapy (CBT) sessions, Biofeedback, physiotherapy, for recurrent blood tests or signed off work when it got too much. Then I would have even MORE time on my hands to worry plus the additional guilt of letting people down.

I turned to holistic therapies instead such as massage, acupuncture, bio resonance, reiki, yoga, meditation, and mindfulness which were a varying success. I am a huge fan of massage, yoga and reiki but I find it difficult to ‘switch off’ and enjoy them so can only access them effectively when I’m fairly calm to begin with. Otherwise I spend half the session worrying that I’m not relaxing and should be enjoying it more!

I bought expensive vitamins and fish oil capsules read loads of self-help literature and bought loads of diet plan books. I remember buying Gillian McKeith’s ‘You are what you eat’ and obsessively underlining sections which applied to me then writing out elaborate meal plans which never got off the ground. But I would keep going hoping to find the piece of the puzzle which unlocked my worries and set me free.

I had a few issues with food, mostly texture based and OCD traits, touching lamp posts a prescribed number of times when I walked past them, when I was in primary school but most distorted thinking behaviours kicked off after I started secondary school.  I would associate negative things with an object or place and my thinking became black and white, over generalised and catastrophic. If I was in a supermarket to buy a mascara I would obsess over choosing the perfect one and would choose the third one back from the front because it was a lucky number at the time but would then put it back because the packaging had a slight defect which meant that if I bought that one it would be ‘unlucky’ or give me spots or make me unpopular. Crazy things would churn around my head and I would either try and win against the voices and pick one and march off to the till or be so consumed by the voices I would put it back and walk out the shop with nothing. I used to worry that if people were watching me on CCTV they would think I was shop lifting because I must have looked so shifty standing around an aisle and having this mental back and forth!

Twenty years ago it was embarrassing to have depression and it was whispered about with only your closest, most trusting friends or a sympathetic parent. From my perspective, mental health is being talked about now which is great. From Prince Harry to Lily Allen and everyone in-between. If I was 17 now and had an inkling that I was depressed I would feel hopeful that if I went to the doctor or tried to access help it would be easy to obtain. Unfortunately by navigating the SEND world with L I have come to realise that yes in 5 – 10 years’ time services and provision will probably have improved and be more abundant but right now in England in 2018 if you are one of the unfortunates to be affected by depression or are parenting a child with severe emotional needs there is a massive discrepancy between the illusion of everyone joining forces to combat depression/mental health that you see in the media and the reality of what you can actually access when things go a bit pear shaped.

When you are at your most fragile and low you have to put on your toughest armour and fight, push and shout for help. It all comes down to funding and being in the front of the queue as it always does but it is not right that children as young as five should have to get to the point of self-harm before services intervene and provide support.

‘Prevention is better than cure’ is not the mindset here. ‘Break then we may try and help fix it’ is more appropriate.

Society is more stressed, anxious and depressed than ever before and needs a huge injection of funding to fire fight all of this. Good mental health is the key to surviving and needs to be firmly pushed to the forefront of everything in order to keep us ALL sane.

fragile

A tale of two Pick-ups

As the clock starts to count down to 3pm my anxiety and adrenaline levels start to climb. Shuffling along the path waiting for the caretaker to unlock the gate I feel nervous. ‘The Shawshank Redemption’ springs to mind. No, stop-it! Other mums and dads are laughing, chatting, shouting for their younger children to come back. I am swallowing, taking deep breaths suddenly aware of my hands. Can anyone see me? Are they looking? Luckily it’s sunny and I have big dark glasses to hide my worried, tired eyes. The crowd surges forward and I am swept along with it.

What will I get today? Happy or sad? Chatty or angry? A cuddle or a punch? Over the last four years I have learnt that ‘the drop off’ and ‘the pick-up’ is a bit like Russian roulette. A horrendous drop off can result in a smooth pick up. A seamless drop off can result in a pick-up with numerous meltdowns until bedtime and beyond.

There is no rhyme or reason with Autism.

We are all neurological cocktails, each with perhaps a dash of glutamate here, a splash of serotonin there and a sprinkle of endorphin to finish. Once we reach adulthood we become less in tune with our emotions and can have good and bad days with seemingly no reason. Its only when you become more aware of what your body is trying to tell you, your emotional patterns that we understand what is really bothering us.

Children are way more emotional than us.

Neuro-diverse children are emotion squared.

 

Last week I had two very different pick-ups on consecutive days.

Pick-up 1 – The Supermarket Weep

I have recently received parent coaching where I relayed my fears and experiences of pick up. Most off-the-rails PDA behaviours seemed to stem from L not being allowed to ‘do anything fun’ after school. If she wasn’t collected with the promise of a trip to the shops to buy a toy (or in her case another pair of shoes) or a visit to the seaside (logistically impossible after school) she would flip. She would then want to control me and what we were doing for the rest of the day. ‘Going home’ was her idea of deprivation to the nth degree.

To manage this we decided that L needed to know what to expect after school each day and discuss and/or negotiate it calmly and logically the night before such as, ‘we can’t go to the seaside but perhaps we could get the paddling pool/sandpit out instead?’. With a clear plan we agreed on (letting L have as much control as possible) this could help to calm the post school meltdowns. (When I get the time I can make this into a visual choice board. I’m still waiting for ‘the time’.)

L has been into ‘making salads’ in the garden recently. Or in layman’s terms, filling a saucepan with the choicest cuts of rose, vibrant blossoming plants, grass and sprigs of lavender. However it is a solo effort on her part so the shock and disappointment of the pretty flowers slowly dwindling is swallowed down whole with no residue of blame. In response I thought a nice post school activity would be to write a shopping list, buy the ingredients at the shop and make a salad. Simples.

Shopping List – educational – practising her writing *tick*

Buy the ingredients – develop Ls interest in food *tick*, give her control *tick*, educational opportunity *tick*

Make a salad – not too difficult to do so will allow L maximum control of cooking *tick* she might even be tempted to eat some of it *tick**tick**tick*

So the pick-up rolled around and she came out of school smiley and excited to be going to buy ‘her shopping’.

‘Have you had a wee?’

‘Yes. Let’s go hurry up!’

<Hands L a muffin and carton of milkshake. No comment made so food or drink isn’t a demand but hopefully she will want one or both as she probably hasn’t eaten or drunk much all day and hanger usually sets in as we cross the threshold between the school and outside world.>

Once in car – ‘I want to buy a toy’ <ignores this comment>

In the rear view mirror I clock that muffin is half eaten. Drink is half drunk. Phew.

‘Were going to buy your food shopping’

<FIRST MISTAKE>

L loves Tesco because it has ‘Mars’ Milkshakes and ‘Marmite’ rice cakes but most importantly toys, clothes and shoes. In my perceived wisdom I had decided to go to Aldi as there were less distractions and hopefully we could concentrate on the task at hand instead of being sucked into a negotiation over toys/shoes. This is clearly important to L, she likes Tesco and knows it as we have been so much therefore my control over the choice of shop had already started to lay the foundations for trouble. However, I only realised this after analysing why it went wrong at the end of the day.

‘Why aren’t we going to Tesco?’ Ls sense of direction is unfortunately amazing.

<Deflecting the question> ‘Aldi have a big selection (read that ‘cheaper selection’ and if you’re going to waste it which I’m 99% sure you will I’d rather spend less) of fruit and vegetables

‘I want to go to Tesco’ <ignores>

‘I want to buy a toy’ <ignores>

‘A tiny toy. Mummy look this big’ – shows thumb and finger pressed together. <I raise my eyebrows non committantly>.

‘Here we are. Wow there’s a parking space. Woo!’ I’m starting to get more nervous about how this is going to go down so I am talking nonsense and getting over excited about a car parking space.

We get out, there is a small kerfuffle over who shuts the car door, then which trolley is the chosen one but the novelty of the pound coin in the slot is a big enough distraction, and were in.

Maniacal laughter ‘Mummy look oranges! A pineapple! Bananas!’ L tries to pick them all up. <I produce the list with a flourish, the visual, concrete and pre-agreed.> ‘Do we need a pineapple?

‘No’ pineapple gets thrown back. Hard. ‘Lettuce’.

The items are taken off the shelf and with the exception of the first item which I absent-mindedly toss into the trolley followed by ‘I WANT TO DO IT’ I learn and let L do everything.

‘I need a wee’ clutches bum and thrusts it out. <Ahhhhhhhhh. There’s no toilets, we’ve only just got here. Ahhhhhhh.> ‘Why didn’t you go at school?‘ <Stupid question, pointless it won’t solve anything.> ‘Ok. Ok well have to go and ask if we can use theirs’ ‘no its ok I don’t want to go now’ ‘are you sure?‘ ‘Yes. It’s cold in here.’ holds self and shivers. ‘Ok let’s go to the next aisle. It’s the refrigerators’. 

I think L is done now.

She has the salad items and seems to have lost interest.

<SECOND MISTAKE> Whilst were here I start to think ‘hmmmm perhaps I could just get some of them crackers I like, L eats them too, ooh and some hummus oh and some milk actually.’ I began to deviate from the list.

What’s the first rule of Autism club? Don’t ever attempt to do anything for yourself on an outing!

L started picking up on other people, a child crying ‘why is she crying?’ the trolley started to be pushed a bit too forcefully. She ran over my flip flopped toes. OMG! That hurt. Do not make an issue out of it, keep going! ‘Come on then let’s go and pay’ <quick! Evacuate the shop, withdraw! Withdraw! Regroup and get out>.

L has recently become very choosy about who serves her in a shop or which till we go to. It was getting quite busy but she was adamant that we went to the busiest till as it had a woman on it and the others had men. I gritted my teeth ‘ok, ok let’s get in the line.’ L suddenly becomes fixated by her shoe strap and bends down to Velcro it shut and open, shut and open. I’m mindful that if we don’t get in the queue properly it will get even longer but she isn’t budging. ‘L!’ ,’L!’ I call. Finally she comes and stands by the conveyor and helps to unload the trolley however, now we’ve lagged a bit I subconsciously start unloading things myself to speed up the process. ‘I WANT TO DO IT!’ The first tears of frustration begin. We get through the till but the check-out lady is running on ‘Aldi speed’ and the groceries are coming through faster than L can pack. She gets angry and starts to cry harder and falls to the ground. ‘I WANT TO DO IT! YOU ALWAYS DO EVERYTHING!’ I try to half pack and half calm her down which makes her even angrier. She punches my arms, slaps my hands away and falls to the ground crying and wailing. People are starting to stare. I need to slow things down but I am bound by social conventions and starting to feel embarrassed.

I’m sorry she has autism‘ I whisper and the lady is very nice about it but the subtext in her expression is ‘hurry up’. I’m beginning to think the half a muffin and milkshake haven’t really hit the sides so I shove another muffin at her from my bag and she takes it and runs towards the doors. I chuck everything into the trolley tap my card and shout to her to come back. The muffin seems to be working and she is breathing more steadily. Whilst the muffin continues to distract I pack everything away in super-quick time. She follows me to the car and with the promise of a pound coin she helps to park the trolley albeit very slowly and in a very measured and precise fashion. Once in the car she asks for my phone and starts to watch ‘Miraculous’ singing along to the theme tune. And breathe…

That evening I realise MISTAKE THREE and FOUR. I hadn’t factored in the quick packing system and the busyness of going after school. I always feel defeated after trying to go out and it turning into a disaster but each encounter definitely hones the process and over time hopefully there will be more chance of it being successful. Next time we do this activity. I will go to Tesco. Stick to the list. Take quick pack bags such as jutes and see if we can go at a slightly quieter time maybe 4-5pm before the work rush starts.

Trial and error. Always.

 

Pick-up 2 – The Leisure Park lovely 

L has a love hate relationship with ‘Soft play’. She loves it when it’s quiet and hates it when it’s busy. I can see the appeal. I enjoyed getting my sweat on back in the day before air conditioning existed en masse. It’s a win win. Kids love it and parents love it as they can sit back whilst their charges go crazy burning off excess energy. There is a murky underworld of ‘Soft play’ which I will explore in more depth in another post but for now it was Ls post school activity choice.

Like the previous day, pick-up seemed to go relatively smoothly. L came out the door and said ‘Soft Play!’ excitedly a few times. Learning from yesterday’s mistake I had factored in a ‘wee and food pit-stop’ at our house on the way to Soft play and gently reminded her of this as we climbed into the car. She was quite chilled out and settled down to some tablet and snack time when we got in on her own accord. I let this play out and as the mood was quite calm managed to do a few chores in the kitchen. Some days she is content to ‘just be’ after school with no interaction, some days she needs me to do everything with her and bark orders at me, some days she is furious with me and will try to initiate arguments left right and centre. However today was my favourite type of after school L so I let it play out.

It got to 4.40pm and I started to worry that if we didn’t get going soon soft play would shut at 6pm. I casually mentioned that if we still wanted to go we needed to think about it. L agreed she still wanted to go so we leisurely got ready and got back in the car.

The soft-play is in a leisure park and once parked up you need to walk past the cinema and restaurants to reach it. L is very intrigued by the cinema. We attempted Cars 3 last summer and stayed for a whole 5 minutes before it became too much but since then she has asked to go and have a look each time we go past. She loves the glittery black and red tiles on the floor and will jump, hopscotch and skid across them in delight.  As it got to 5pm I started to think that soft play was forgotten again but knew she really wanted to go so at the risk of ruining her cinema jumping and issuing a demand on her I started to walk towards the door to convey ‘were done here’. L got the message and followed me. We got inside soft-play with a bit of opening and shutting of the automatic gate and then found a corner to put our shoes in.

There was lots of potential pitfalls in the midst, the racing cars had stopped running and L loves to go on these, there was a party group who were being quite boisterous, ‘big boys’ were hogging the football pitch, a toddler ‘stole’ her mini trolley in the role play area, I let her choose one item only at the café not two or three as she usually tries, oh and she had a broken arm but somehow everything just flowed nicely. We even had smiles and giggling in the (empty) under 2s area, jumping into the ball pit and her ‘pushing’ me in, but in a good natured jokey-way. The only thing that threatened to dull her mood was the relatively short time we had left however when the tannoy announced that they were closing the demand came from a higher authority than me and like an obedient puppy she climbed straight out of the ball pit and put her shoes on.

A success!

 

We did have a breakdown in the car park on the way home over throwing her slush puppy drink away. She couldn’t find a bin and wanted to throw it in the one back by the soft-play but I asked her to keep hold of it and so she tipped the remaining drink over the floor and threw the cup into the road in the way of an oncoming car but we moved on from it.

Good experiences buoy your confidence and make you feel like you can do things again whereas bad experiences threaten to undo all your hard work as disappointment and failure set in and you stop trying.

However every day is different.

Every hour.

Every second.

God loves a trier apparently, so I will keep trying.

disco

Apocalypse ill

Walking amongst us are a special type of offspring who to Autism parents take on a mythical status, not unlike the Unicorn. They possess an abundance of good health and enthusiasm and constitutions of magical proportions. They are sometimes referred to with great reverence as the ‘100% Attenders‘. The Elite.

L came home with another ‘Punctuality and Attendance’ letter recently. Her attendance had actually gone up 10% since the last letter, a fact which I personally felt merited a celebration as this has been the result of lots of hard work on her and my part but nevertheless it wasn’t a celebratory letter is was another ‘could do better’ one. It honestly baffles me how some children manage to complete a term or sometimes a whole year with 100% attendance – but they do and I have actually met some of them. They are lovely.

Naturally, my first thoughts should focus on the benefits to the child; the accessibility to the whole curriculum on offer, the consistency and opportunity to absorb everything without needing to recap or catch up…but they aren’t.

My first thought is ‘how lucky are the parents!?‘ No heart stopping phone calls, no late fraught mornings, no doubts, no sick to the pit of your stomach days waiting for the phone to ring. Im so jealous.

Nothing strikes fear in me more so that the onset of L coming down with an illness. Sadly we have been dealt a lot of illnesses in the last year from recurrent upper respiratory tract infections to a tonsillectomy, stomach bugs and recently a broken arm. I have discovered that her illnesses tend to take on a pattern and present in a four phased progression.

Phase 1 – The ‘Calm before the Storm’. For a couple of days prior to the illness erupting L becomes less energetic and watches her tablet more. Before I got wise to this I used to think this time was her possibly having a ‘good’ day and not displaying her autistic behaviours as much so she was ‘getting better’ at regulating and we were onto a developmental breakthrough however this was swiftly extinguished when Phase 2 began.

Phase 2 – The Rage. This is when the illness hits and tempers begin to flare. L will growl, sigh, oppose, demand and butt against everyone literally and metaphorically. If a demand is made or merely suggested be it taking medicine or eating icecream she will explode and refuse. Sleep is hard to come by and alot of time is spent downstairs in the early hours watching Netflix.

Phase 3 – The Apocalypse. The illness is in full throttle and it is a time to batton down the hatches, remove glasses and sharp objects and tread carefully. L doesn’t cope with illness and can either over or under exaggerate her symptoms. She can have a 6 hour breakdown over a small graze or can ‘seem’ ok but then be diagnosed with tonsillitis. Luckily in Phase 3 she will give in and take medicine but she will only accept Calpol (because it is the right shade of pink) generic alternatives are refused and she must do the syringe herself. Sometimes with a countdown sometimes in her ‘own time’. Sleep is pretty non-existent as once she lies down coughing, swallowing and breathing problems get worse and are too much to cope with.

During Phase 2 and 3 PDA and Autistic behaviours are ramped up. We get lots of line-ups and anxious questions or anger. It is usually worse at night-time as she can’t sleep comfortably and is tired and hungry due to refusing food and drink all day. She will demand drinks with precise specifications ‘in a glass, all the way to the top, with a pink straw that I choose myself and put in’ but then refuse to drink it once it arrives. Furious because she perceives that I have got her order wrong.                                   Again, I feel that I’m pandering to her and time old mantras ring in my head like ‘I make one meal and if they don’t eat it they go hungry‘ or ‘Id never let her speak to me like that‘ but through trial and grave error I’ve come to accept that PDA doesn’t abide by the same rules as everyone else. The more I ignore, ask for ‘please and thank you’s’ or insist the harder she kicks back and any trust or progress is threatened. She needs to be in control and her anxiety is at fever pitch so now is not the time to make a stand or exert my control over her. I facilitate her demands to the best of my ability and try to remain calm. I take deep breaths and try to talk in a ‘beige voice’ I limit my language and try to make myself as small as possible in her presence so I don’t stoke any fires. I am here available should you wish but also not here.

But it is impossible to sustain this act over time, I’m only human. I know what works but I also know I have a breaking point. If I can get adequate sleep in between, if I get to tag team her care with my partner or family that helps but sometimes people are away or unavailable and that is where I falter. I suffer with depression and anxiety and when my sleep is severely compromised I start to crumble too. For me I suffer with IBS and psoriasis so these flare up. I start to feel more anxious, hopeless, negative, stressed, impatient, claustrophobic and then guilty.                                                                 All the ‘nice little extra’s’ of parenting fall by the wayside, a gentle cajole to get her to put her socks on with a ‘poo smelly feet!’ for humour turns into a ‘put your socks on NOW!’ the strategies I know help are harder to access as I default to generic parenting styles with more shouting and threats.

After day 7 of her last illness, prior to the broken arm, I broke. I lie crying in bed at 5:20am, I vividly remember the clock ticking, as she called for me to come in her room for the hundredth time.

I physically, mentally and emotionally couldn’t do anymore.

Unfortunately, L will only accept me in the night 99% of the time but in this instance dad went in to try to help and then she ended up in our room crying, me crying and my partner probably on the verge of tears too. Moments like this are scary and everyone is out of control. Normality is so alien in these moments you cannot comprehend things ever getting better. But time passes. In the darkest nights I repeat ‘this too shall pass’ to myself. I’m not sure where it came from and it sounds vaguely religious which Im not but it is the only thing left to cling onto. If you strip everything away day follows night. It will end at some point. Keep going. The human spirit is hard to break and most will dig that bit deeper somehow and keep going. But its horrible. Heart-breakingly horrible and we have found ourselves here quite a few times now.                      

Phase 4 ‘The Recovery’ This is where the light at the end of the tunnel is in sight, the effects of the illness are lessening and periods of wellness are starting to creep in. Once medicine has been accepted L craves contact and will want to sit on my lap or be picked up constantly. I’m working so hard to get L to feel more confident about walking and being ‘on her own’ without needing to be picked up because she is scared. It has wrecked my back over the last few years as shes gotten older and heavier so whenever she reverts back to being clingy I worry that all this hard work will be undone however it is what gets us through the day at that point.

Sleep slowly goes back to normal (and when I say normal I mean normal for her – not 12 hours a night every night  – oh no!) Then everyone breathes a collective sigh of relief. We have been washed up and spat out on the other side of the beach. Dripping, scarred and knackered but alive!

I sometimes feel embarrassed to call myself a ‘carer’ as it feels too ‘self-important’ and ‘professional’. However, when L is ill and time literally stops for days or weeks at a time whilst we get her through it I recognise and accept the role. With this role I also accept the responsibilities it brings and am in turn led to consider that as a carer I am entitled to respite. If I worked in a Nursing home as a carer I would expect a break after 6 hours in line with European Law however respite for Autism parents, to me at least, has seemed elusive and complicated to obtain. I sense it is a fight for another day and whilst I’m still recovering from the latest apocalypse I will have to put it on the back burner with everything else for now.

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Pomegranate Molasses

I decided to call my blog PDA bubble because most of my day truly feels like I am living in a bubble of autism, demand avoidance, edited language, highs, lows, anxiety and hyperactivity.

Like a weird alternate reality I instinctively get back on its treadmill day after day. Minutes can be lived in excruciatingly slow motion but then a month can pass by in the blink of an eye. Sometimes I have no concept of the day, month or time and it can become disorientating. Whilst watching Netflix’ ‘Stranger Things’ recently, I could compare living ‘Autistically’ to being in the ‘Upside Down’. It is unreservedly other-worldly!

Because I only have one child I can completely dedicate and focus all my efforts and attentions on her, which is great and will hopefully help her to navigate life. But this also means that a lot of my life is lived in our ‘pda bubble’ with fewer opportunities to gain perspective and exist neuro-typically alongside everyone else. This in turn has led to some ‘double take’ moments over the last few years when a sudden shot of real life pierces through the bubble.

I had an estimated 10-15 minute break in a nearby town recently as L begrudgingly agreed to go to the park with Daddy whilst I looked round the shops ‘on my own’.  This was no indulgent mosey around to browse or peruse it was a literal 10 minute dash to get two birthday cards, a birthday present and possibly some probiotics for L against the clock – and this was my only window. Taking L to the shops is quite traumatic and only done on a needs must basis with firm expectations set beforehand and reiterated throughout.

Post children, it still amazes me how many things you can get done in a miniscule time frame.

Now, I am wholly at peace with the reality that everyone is at a different stage of their life at this present time. New mums have different sets of worries to retired CEOs. Some of us are optimists some pessimists. When we walk past people on the street we don’t see all their issues laid bare. Therefore behaviours are usually the tip of an iceberg.

However, it’s funny what we remember and what sticks out.

Birthday cards done, present sorted now a quick look in a well-known health food shop for the probiotics. Adult probiotics, adult probiotics, ah, here they are child probiotics. Wow they are expensive! Do they work? They must do. But what if she won’t take them?

SUDDENLY a plummy voice filled my ears. I felt myself nudged along the aisle. ‘Pomegranate Molasses!’ She exclaimed. ‘I can’t find any. Where is it?’ The sales assistant was busy scrabbling around the shelves trying to locate said item whilst I was still reeling in shock.

Once I had processed this information I thought wow, how polar opposite could my life be to sourcing pomegranate molasses? I’m here with 2 minutes to go trying to weigh up the pros and cons of probiotics whereas this lady has just marched into the shop demanding that someone solve her syrupy dilemma.  I started to blame the town I was in, the rudeness of others and ‘The Great British Bake Off’ but then… I let it all go.

Everyone has their own reference point to measure their life against. A disappointment to one might be an opportunity to another. Right now this lady was on her own personal mission to find this ingredient and based on various life experiences, character traits and motivations was doing it in her individual fashion. When I feel angry because someone is getting stressed about something I consider a non-issue neither of us are wrong. We are both right in our lives at this point. What matters today is forgotten in a year. Nothing remains the same everything is transient.

I used to let things grate on me and ruminate over them for days afterwards but now I see that it is wasted energy. I guess that it is part of the ‘don’t sweat the small stuff’ mentality but these days I have less energy to expend. I observe, accept and move on quite detachedly (well, most of the time anyway). Bringing up an autistic child requires you to wipe the slate clean several times a day, sometimes an hour and letting go of anger, resentment and disapproval suddenly seem easier.

Maybe one day my primary concern ‘du jour’ will be sourcing white Liquorice root crystals for a smoothie I want to make. No, I don’t think so either but it takes all types of people to make the world go round. Who am I to argue with that?

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The Parenting Course

I’ve heard the phrase ‘no child comes with an instruction manual’ a lot over the last few years. I know it comes from a good place and is supposed to alleviate worry, guilt and concern but I can’t help feeling like a failure when I hear it. It feeds straight into my insecurities, fears and self-doubt.

Everyone else seems to be doing it right. Some people I know are even on their fourth child. Fourth! I can’t even keep my head above water with one. I am obviously completely useless at child-rearing. In our society, asking for help is seen as weak and requiring extra support just to look after your own child must be the pinnacle of shame. How on earth have I managed to fend for myself over the years if I am this incompetent!

Early on in our diagnostic journey a health visitor suggested that I attend a Parenting Course in her words to ‘show willing’ and presumably to make sure I wasn’t doing anything blatantly wrong. I remember feeling embarrassed to tell people. Further down the line I realised that attending a ‘Parenting Course’ is a formality for SEN parents and a stock response whenever anything is becoming more challenging. It also provides something to cling onto whilst waiting for an assessment. I take comfort now because I have learnt that bringing up a SEN child isn’t plain sailing and that even Mary Poppins would have needed to attend a few courses.

Two people have a baby and they do the best job that they can with the resources they have available to them at that point in time – emotionally, physically, financially. Before the baby is born you might have a few ideas on what hopes or dreams you have for that child or what you might do differently/similar to your own parents but generally you are pretty hopeful and enthusiastic (at the start anyway…) What you don’t do is sit there of an evening discussing in minute detail exactly how you are going to do everything. And some of these things are huge – sleeping, discipline, feeding etc. But you don’t discuss them you just inherently start to do them once the baby is here based on how they were done for you and what the expectations, codes and conventions of modern life expect you to do. A clean nappy after a poo – good! leaving a toddler alone by a large expanse of water – bad!

Now I am a self-confessed ‘course-whore’. Since that first Parenting course I had been on loads! I take the view that knowledge is power, talking always helps and even if the course is boring it has helped to make me feel less isolated by getting me out. Plus a smiling stranger usually greets you with a tea and a biscuit which is pretty welcome after a fraught morning trying to get a school refuser to school (and you don’t have to do the washing up). The courses, however are a bit of a mixed bag. The first Parenting Course I went on ‘The Parenting Puzzle’ run through my local Children’s Centre was very general. With the exception of two parents the rest seemed to be there against their will and would often be late, go massively off topic on a self-absorbed monologue or not turn up at all. The facilitators had trouble reining them in and the discussions were usually quite forced and not very insightful. It is a tough gig to appeal to and include parents from all walks of life but instead of helping me I felt more demoralised. The techniques which we would discuss each week weren’t working for my child which made me feel like I was failing again.

The best course I have been on was through Families in Focus ‘A Complete Guide to Parenting Children with Additional Needs’ see www.familiesinfocus.co.uk for more information. The two ladies who run the company have vast experience of SEN both personally and professionally. They are warm and engaging and know exactly what parents want and need to hear. They are amazing. I felt like I had come home. Everyone was enthusiastic, honest and on the same page. I felt buoyed by peoples stories and emotional. People were at different stages of their journey but all were willing to share and take an interest in everyone else. It felt like therapy each week and I honestly think it changed my life. One lady told me how she recognised the ‘haunted’ look in my eyes and that it gets better. I always thought I did such a good job of covering up my emotions and appearing ok and it felt exposing to hear that. However it was true, I was vulnerable, desperate and lost.

There is no quick fix when finding out your child has SEN or Autism or PDA. It takes time to learn what works and what doesn’t and it is constantly changing so you never get to the point where you are done with learning – a bit like life itself. However, I was recently chatting to some other Autism mums on a rare night out and we agreed that courses were good – some better than others – but that we would like to be selfish and attend a course for ourselves. All about us and our needs and not the child’s for once. In this vein, I then though what my ultimate Parenting Course would look like and I think this is it….

Autism Parents Guide to Survival – ‘All about me’

Week 1 – Introductions and Cocktails

This session will be held in a quiet corner of a local pub. Attendees are expected to make as much effort as possible as we know you don’t get out much. We want everyone to share their story but we realise the first session will be awkward so we will start with a cocktail making masterclass to break the ice. You are then more than welcome to sample your creations.

Week 2 – Keeping Sane

This session will explore the current state of your mental health. We will not sugar coat the truth. Having an autistic child sends you to the brink of your sanity. This is the first proper session and the most important to keep you functioning – so please attend. We will look at how we can help you cope, similarities we all experience and ways to make your mental health more robust. Referrals to appropriate services will be made if required.

Week 3 – Is it possible to hold down a job/relationship?

Can you have it all? It is harder for Autism parents to hold down a job and the break up rate of marriages and relationships seem much higher than average due to the pressure of raising an autistic child(ren). Can you carry on working and/or having a relationship? We explore different options and what happens if you can’t work or need to part from a loved one.

Week 4 – Navigating Friendships  

When you enter ‘Autismland’ you may find that you do not have as much time as you used to to see friends. You may begin to question current friendships and feel like you are drifting or veering off in another direction to everyone else. Some friendships survive, new ones begin. This session will help you to analyse your friendships and reassure you that change happens and some of it is actually good.

Week 5 – Who am I?

Following on from last week’s session we will attempt to reconnect you to ‘you’ or the ‘new you’ now. Life and everything in it may have changed dramatically in the last few years and we will help to unpick these thoughts and feelings. Although crying is not essential we will provide ample tissues should they be required.

Week 6 – WORKSHOP – PECS generator

This week will focus on producing and laminating a set of PECS, visual time tables and behaviour aids specific to your child(ren). We know that you will be unable to find the time to do this in your current lives so we will make it easier for you. Each attendee will have access to a pc, printer, laminator and lots of pretty card which will help you to make amazing visuals all in one evening.

Week 7 – The perils of Alcohol

Parenting is tough. It can be easy to ‘reward’ ourselves with alcohol at the end of a long day as it is so socially acceptable. We will explore the effects of alcohol on our mental and physical health and see if we are using alcohol wisely. This is not a judging session but to offer support if you feel that your relationship with alcohol is becoming too familiar and might want to change it. Referrals to appropriate services will be made if required.

Week 8 – Mindfulness and Relaxation

The final session. We will be looking at Mindfulness because everyone is at the moment and it is really popular so the course won’t be complete unless we include it. Personally I have found that is works too! As a little treat we will provide a complimentary massage to all attendees who complete a feedback form at the end of the course. We know you don’t want to complete it but no form = no massage.

Then we will send you on your way hopefully with a spring in your step and if nothing else your PECS will be done.

I’m not sure who would fund this but if I receive any offers I promise I will do my best to get it up and running 🙂   

iheartcourses