Welcome to the Show!

The Virgin Mary circa 1987.

Demetrius from Shakespeare’s ‘A Midsummer Nights Dream’ circa 1994.

Two very different characters but the sum of my acting experience until Pathological Demand Avoidance (PDA) crossed my path. The PDA Society http://www.pdasociety.org.uk lists the below as one of the key features of PDA;

Being comfortable in role play and pretence, sometimes to an extreme extent and the lines between reality and pretence can become blurred’.

The ease at which role play can be assumed is one aspect which differentiates PDA from a typical presentation of Autism Spectrum Disorder (ASD). In my experience this has translated into becoming the ultimate Impressionist akin to Rory Bremner or Ronni Ancona.

Once a programme is watched and the character(s) are enjoyed and welcomed into our home they must be absorbed into our own characters and acted out through them. However, with Ls attention to detail and desire for everything to be consistent especially during times of anxiety, standards are high.

In one day I can be expected to ‘assume’ Scottish, American (Deep South and Californian), Canadian, Spanish, Irish and Eastern European persona’s. This can range from voicing characters during play sequences, to making requests (aka ‘hidden’ demands via a hypothetical person) to reading a bedtime book. It has been pretty consistent since L was about three years old and characters wax and wane in line with her favourite programmes. If I mix up a Tenderheart Bear accent (Care Bears) with Twilight Sparkle (My Little Pony) all hell can break loose.

I find it hard enough to remember what day it is most of the time let alone which region of American I’m supposed to be in BUT it makes her so happy. A testing ‘I’m plum-tuckered its time for me to hit the hay’ courtesy of Applebloom (My Little Pony) can sometimes be enough to deflect a mood dip and get us upstairs in the evening.

I draw the line at continuing the accents away from the house but I have resorted to quietly speaking in them if tempers/anxieties escalate. People must think I am absolutely nuts but what works works!

Alongside my impressionist skills I also need the ability to mind read as characters can switch instantly for no rhyme or reason and I will be met with a swift ‘Errrrrrrrr! Rarity’s voice’ if I’m in the wrong one. Theory of mind at work again!

When watching TV L may suddenly say ‘that’s Andy’s voice’ meaning the character she is currently watching sounds like Andy from Toy Story and I have to follow her mental thread fast enough to cotton onto what she means and confidently agree that he does. She picks up on insincerity instantly.

If she hears a song she knows, in a shop or in the background of a programme for instance she will immediately say ‘Trolls mummy’ meaning ‘Cant Stop the Feeling’ from Trolls. She is so in tune with her hearing that this sense must be heightened a reported commonality among other people with ASD.

She is effectively controlling our play by having me assume these accents and is very rigid in what she expects me to say and how. If I deviate from her script then she will become annoyed and upset very quickly.

In an attempt to open up her play and communication I am slowly trying to introduce curve balls for her to deal with. This will help her be able to access play with her peers who are not as compliant as me. This could be pretending to use an item which isn’t actually there or having a character say something they wouldn’t normally. It is a slow process and one miss timed comment can result in the whole game being over but I am persevering as in the long run I know it will help.

Challenging stuff or as Grumpy Bear might say <assumes gruff moany American accent> ‘Awww I’m fed up of being me Tenderheart can I be mummy again now?

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Me who? Books

The first days/weeks back at School, especially after a long summer holiday are filled with so many mixed emotions as a parent. For me these encompass the following;

Excitement (a bit of hard-won freedom/alone time)

Decadence (wafting round town solo with a Starbucks and a couple of bulging shopping bags assuming another identity for a few hours – also having a good long dry of my hands in a public toilet with a powerful hand-dryer after checking there are no potentially noise sensitive ears around of course – I’m not that twisted!)

Anxiety (will they be ok? Is this the right decision/place for them? Will I get a phone call today?)

Fear (what if they catch a bug on the first day back? Break their arm again?)

Longstanding Worry (will they make friends, cope, be happy?)

Sadness (I’m actually missing them! the house is too tidy and quiet)

Pressure (I have a massive to-do list to fruit ninja my way through and only a maximum of 5 1/2 hours to do it ALL!! <hyperventilates>)

Indecision (I’m knackered! Do I rest or get on top of the washing basket?)

Guilt with a fino side of negative self talk (I can’t get back in bed and rest it’s just too lazy. But I’m tired! Don’t be so pathetic and ungrateful think of XYZ)

Frenzied Thinking I should be doing,wearing, trying, emulating that (usually fueled by scrolling through the help and hindrance which is social media)

In a nutshell – too many emotions has made writing about the tough stuff tougher this week so to keep me busy from veering from one to the other of all of the above I thought I would continue my ‘Me,who?‘ series.

My second top ten is about ‘Books‘ and because I didn’t write any of them I can’t get all ‘angsty’ over reviewing them.

I adore reading and love how a book can completely engross and transport you. I usually read horror, crime or psychological thrillers with the occasional autobiography or self-help book thrown in to mix up all the death and terror. However, since L received her autism diagnosis two things have changed;

1. I joined a Book group which has expanded my horizons and

2. I have started to read around the subject vociferously both to find out as much as I can but also because it is so interesting! I have chosen these 10 books as I have read them in the last year and they made an impression on me. They are largely about Autism and Mental Health but come from fictional and non fictional backgrounds. Every day a new book or article comes to my attention and I add it to my mental reading list or save the link and hope to return to it but it doesn’t always happen. My rationale is that these beauties made it through and actually got read so they must be worthy!

Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy

This is the ultimate ‘go to’ book when first researching or working with a PDA child.

Read this first if you haven’t already!!

It includes lots of experts in the field discussing PDA and providing examples of clinical case studies – a lot of which rung true for me.

Eleanor Oliphant is Completely Fine by Gail Honeyman

This book has consistently topped bestseller lists since its release in 2017. In theory it is ‘just another’ account of a lonely singleton who meets a guy and falls in love.

Blah blah blah. Except it isn’t.

Gail Honeyman builds up the mental and emotional picture of Eleanor so exquisitely that you really get inside her mind and are forced to contemplate societies disconnection with each other. Although history and questionable parenting contribute to her demeanor Eleanor is clearly for me one of the ‘undiagnosed’ ASD women walking around seemingly unnoticed.

I can’t wait to read more by this author.

A Boy made of Blocks by Keith Stuart

I am really interested in accounts of autism parenting from a dads point of view. I have followed James Hunt’s ‘Stories About Autism’ for the last few years and found it to be raw, engaging and uplifting. Sometimes dads take a bit of a back seat as blogs/books/support groups are skewed towards a women’s perspective written mainly by women but I find the male perspective so useful and amusing. Stuart writes honestly in a Nick Hornby/Danny Wallace/Graeme Simsion vein about navigating his relationships with his autistic son Sam and wife Jody. A detailed and tear jerking history of discovering and rediscovering each other.

How Are You Feeling Today? by Molly Potter and Sarah Jennings

I have read quite a few books about emotions and feelings aimed towards young children and found a lot to be too wordy, too outdated, for older children or the pictures frankly terrifying but this book is cheerful, informative and one of the only ones which L actually cast an eye over so I’m hoping there might be scope for a re-read in future.

Emotions are listed at the front with a corresponding page number to refer to where a double page spread is dedicated to explaining it and some options to help circumnavigate that feeling such as ‘I’m bored’ and ‘try and copy a picture from a book that you like’. This genre is really starting to grow so I’m hopeful that more books like this will appear soon.

Stuff that Sucks by Ben Sedley
The Reading Well Programme in association with the NHS and a large number of other organisations is a great initiative. It is mainly publicized in libraries and bookshops and includes books about various medical/health issues which have a little round ‘Books on Prescription’ sticker on them. The adult self-help market is gargantuan but the child/teen market is another growth area and some great books are coming through. I read these with the view ‘would they have helped me as a teenager/would it be something I think L would benefit from when she’s older?’
This book is accessible, quick to read, reassuring and in no way preachy. I found it useful myself and think it would help any teen/young person going through anxiety or mental health issues to feel less alone and scared.

Asperger Syndrome (Autism Spectrum Disorder) and Long-term Relationships By Ashley Stanford
If your partner is diagnosed or has a strong possibility that they are on the spectrum then this book is a godsend. Stanford systematically breaks down the diagnostic criteria and then relates it back to real life situations. A whole lot of empathy can be gained from reading this book and identifying or relating to why? why? why? your partner may do the things they do in a relationship and aren’t just purely being annoying.
I read a lot of posts on support groups were the spouse is resistant to changing their parenting style or personalities in the family stoke up drama. It is very possible that ASD has a genetic component so it is worth investigating all sides of the story and using that information to try to forge new ground in relationships sometimes at breaking point. This book helps to start those conversations.

A Mindfulness Guide For The Frazzled by Ruby Wax
My first experience of Mindfulness was a course back in 2011 and it focused far too much on raisins. Eating one mindfully and tapping into all my senses whilst keeping my feet firmly ‘grounded to the floor’. I left feeling a bit cheated that I’d wasted my time buying into the whole thing and put mindfulness firmly on the back burner. However, after becoming a SEN parent I revisited the subject as things had got desperate! Anything was worth a try to feel better! It was one of the first books I read on mindfulness due to it high ratings (always a draw) and still one of my favourites. Wax guides you through her journey which is in part autobiographical, educational and self-help with some humour, exercises and pictures thrown in. If you’re not sure where to start with reading about Mindfulness this is a really good place.

The Explosive Child by Ross W. Greene

This book explores parenting an inflexible, easily frustrated and explosive child. It is very American but don’t let this put you off as the sentiment behind it all – ‘that children do well if they can’ is worth taking a closer look at. It offers explanations and strategies for dealing with problems and can be very useful if your child has/may have PDA.

Beyond Toddlerdom by Dr Christopher Green

I met a wonderful couple this summer who had a grown up son with ASD. Back in the late 90’s the internet wasn’t an effective means of support, reference books were sparser and society was less willing to be compassionate. She told me about this book referencing it as a ‘life saver’, I managed to happen across a copy of it in a charity shop the next week in a weirdly serendipitous moment and took it home to digest. A lot of it is still hugely relevant and it offers a great snapshot in time for all the parents going through an ASD or most likely no ASD diagnosis back then. It is a broad and informative look at parenting as a whole before Supernanny and the Three Day Nanny existed and I’m sure was fundamental to lots of parents.

Raising Martians – From Crash-Landing to Leaving Home by Joshua Muggleton

In my last job I had the opportunity to attend a lecture given by the author of the above book. A self-professed Aspie he eloquently and humorously delivered his talk to a packed theatre before taking questions. I was so enthralled I ordered the book that evening. We see a lot of books geared towards parenting children but honest accounts of living with ASD as an adult and beyond are fairly sparse. This book is part autobiographical and part instructional to help people with ASD navigate a confusing world and professionals to see another side.
There are so many great books out there but it is really hard to find time to sit and read when you are a parent. I’m extremely grateful that I am able to read two or three books a month now however there was a time not so long ago when it took me 6 months to read one. This week alone I have added about five books and six articles to my Facebook saved pages which I hope to return to – it is crazy! Please don’t give up though because reading is so important! <Stands down from soap box>

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Postcard Lottery

Its that time of year. The sun has even been shining!

The world and his dog are jetting off on holiday and social media is abundant with beachy, touristy, smiley photos.

I love going on holiday although I was a relatively late starter only flying abroad for the first time at 16 to Gran Canaria with my parents. We were more of a week in a caravan by the seaside family and couldn’t really afford anything else however I have lots of fond memories and when the sun shines believe that England has one of the most beautiful coastlines in the world.

Before I had children I just assumed ‘foreign was best’ although crying babies on a plane evoke emotions in me similar to nails dragging down a blackboard. Yet, I figured with my own I’d just be able to mute the sounds better. Fool.

This year on our last evening away L said to me – ‘I’m not ready to go home yet’. It was an emotional moment. It has taken five years of trial and error, tears and resilience to get to hear those words and I completely expect that next year will be different – each holiday is a complete postcard lottery.

I’ll explain…

The summer I had L I was too scared to go away. I was only just coping with leaving the house to see friends or family in short mid-feed bursts. The idea of packing us all up and going away was too much of an Everest moment. The next year we ventured up North to family but illness struck. I swear every holiday eve an illness seems to erupt forth from nowhere. Lots of crying and no sleep. A vague memory of her first trip to the beach where her screams were consumed by the gale force winds. Conversely the third year (third time lucky?) we struck gold. Menorca. Optimal temperature. No illness. A success! Buoyed by this experience we decided to go to Portugal the following year however L’s autism diagnosis was quite fresh and she was starting to find transitions harder to deal with.

We stayed at a friend of a friends apartment on a medium sized complex. It was actually perfect on paper. Spacious, two bed apartment with a large balcony, two bathrooms, large lounge area and close to two pools however on disembarking from the plane it started to go a bit wrong. The journey out there had been fine. I had done my research and used special assistance at Luton so we got settled on the plane first – one less queue! There were a few hairy moments when the family behind with two small girls became distressed at the start and towards the end of the flight but we coped. However once we got our luggage at the other end – the extended waiting, the heat and the busyness of the airport just became too much. L wanted to be picked up constantly as was understandably scared but I was hot, bothered and feeling increasingly claustrophobic so was trying and failing to pass her over to dad for a bit of a break whilst lugging suitcases and kicking bags along. L threw herself on the floor of the airport and started screaming, crying and kicking out. People started to stare and I became self conscious and more stressed. We had a delay getting our transfer and there were no toilets near enough so L unceremoniously wee’ed down the side of a building where everyone was waiting for their taxis and watching. We had to have a complete change of clothes AND shoes and then L got obsessed with the row of sample child car seats in an air conditioned car rental and kept trying to sit in them. The sales assistant wasn’t very impressed with us ‘stealing’ his air conditioning and I just felt guilty and awkward.

We got there eventually and opened the door of the apartment. L was excited and did a frantic tour of all the rooms. In hindsight this is what she does in most new places and it helps her to get her bearings. She immediately took issue with the doors. They were dark brown and quite thick and along the width of the apartment numbered maybe 6 in total. They were all shut to begin with and she instantly picked out the twin bedroom (potentially her room) and said she wouldn’t be sleeping there. She then did a reccy and opened and shut all the doors, cupboards, fridges and freezers a multitude of times. If the windows or light switches are accessible these will all be firmly shut or flicked on and off too. This behaviour was quite new for us though as she had been quite chilled out in comparison on the last holiday so we started to get a bit worried, letting it play out but not really sure if it was good or bad.

When you get to the actual holiday home it usually warrants a bit of a ‘letting out of a ginormous held breath’ moment. You feel like you are finally ‘on holiday’. However L became more and more tense as the day went on. We suggested going to the pool and she refused. We tried to engage her with her tablet for a bit of down time and she batted it away. We got all her familiar toys and books out and attempted to start playing but she was uninterested. Shes tired we thought, its hot, we’ve been up early so we decided to head to a supermarket and get a few supplies for a chilled dinner at the apartment. She didn’t eat and didn’t want a bath but seemed tired so we tried to start a bed time routine of sorts but she was completely wired. I think she eventually dropped off about 11.30pm meaning she had been awake for over 18 hours without a rest.

The next day she was still on edge. The ‘can we go home nows?’ had started and were stuck on a loop of roughly every 5 minutes. I had recently joined lots of Facebook support groups and emailed a few asking ‘is this normal?!’ ‘how do peoples autistic children cope on holiday?!’ I’ve since learned that it is a common response to going on holiday and coping with all the changes in routine. It takes our kids a long time to settle and then they may have trouble getting used to leaving and resettling back at home again. However for us she was becoming more and more distressed and finding it difficult to accept comfort from me or her dad – seemingly zoning out. Effectively she was having a shutdown as opposed to a meltdown but as she hadn’t displayed these characteristics before I panicked that she was having a bit of a breakdown. Understandably this scared me and her dad as we didn’t know how to help her. Desperate, we took her to the local walk-in centre which was a traumatic experience.

Having been quite lucky in retrospect I hadn’t had to visit one before on holiday and didn’t really know the protocol. I’d forgotten our E111 cards and the receptionist was having trouble understanding our description of her problem. To be fair we weren’t sure either. She just kept saying E111 and passport. I was crying, L was crying and the waiting room was packed. We were put in a room with another mother and child who was having breathing difficulties and was screaming because he didn’t want the inhaler and spacer on his face. His mother was gallantly trying to keep it in place as he wriggled and swiped at it. Eventually a consultant explained that we needed to go to the Paediatric department which was based in Faro hospital and gave us a letter to take. By this point we were all exhausted and had been waiting for so long the prospect of driving to Faro and waiting again just wasn’t an option. If we were going to Faro we were going home. Cut our losses and hope that normality helped things. On her next ‘can we go home?’ I said ‘YES were going home’ and her relief was visible. However, then the ‘when are we going homes?’ started. We explained that the lady at the airport had to find us a new plane to go home quicker and set about trying to rebook return flights, see if our insurance which I thought I’d been savvy enough to declare autism on would cover us for anything (it didn’t) and sort out all the admin…whilst trying to keep L (and us) calm. The soonest flight was in two days time but the reality that we were going home seemed to help. We got through the next few days albeit with a rather stressful returning of the rental car saga en route to the airport which has put me off getting another rental car FOR LIFE.

So what did we ‘do’ differently this year which worked. Nothing much. I mean this literally.

I’ve found that spending money on expensive holidays abroad heap even more pressure onto an already pressurised experience. Everything is hinging on it being ‘a good holiday’ and it has taken a lot of planning, a lot of money and a lot stress/anxiety. Car journeys are challenging but the car to coach to plane to transfer coach are even more taxing.

The time difference and an early/late flight also mess with things so I avoid this as much as possible. Getting up for a 5am flight and then enduring the first night in an unfamiliar setting is a recipe for a looooooong day ahead. Noone wants their holiday to start on a massive lack of sleep/stress bender. Travelling by car to somewhere in this country gives you more control of when you go and stop for a break. In future I will always go for the more expensive but more accustomed waking flight times to aid this fact.

Back to basics. I’m not against going abroad ever again and fully intend to take L away to more exotic destinations when or if she is more able to cope but from my experience I think starting simply and gradually building up works best. We borrowed a caravan from a family friend which was on the Dorset coast. Kindly, they didn’t expect any rent for our stay so it eased a lot of money pressure and we kept talk of the trip quite low key. With L she tends to get extremely anxious in the build up to something. We decided to go for 4 nights as a week could be too long to cope with – both her and us with the potential lack of sleep/relentless nature of PDA. Some autistic children find visual timetables and preparation useful but in my experience with a PDA profile this has the opposite effect as it represents an all-present and consuming visual demand. L likes to know before bed that we have things planned each day ‘when I wake up’ but they need to be her choices, subject to change (depending on her mood) and quickly replaced with alternatives which she deems fit at a moments notice. There needs to be structure but also fluidity and spontaneity. This is nigh on impossible to accommodate. Especially if you have other children with other needs/demands and if you fancy eating or doing something for yourself during the day(!) so what we tend to do is have a rough plan for the day and lots of food/snacks on hand in a rucksack and then readjust as the day goes on in response to what she is enjoying/not enjoying and a smidgeon of something we think she ‘might’ like to test the water.

For example on one day we suggested going to the beach or the farm. She chose the farm but we visited the gift shop first to spend her holiday money – spending money is a specialist interest :-). We then explored a few parts of the farm mainly the guinea pigs and bouncy castle but only when they were empty/quiet. We then went back to the caravan for lunch as she’d had enough even though we were starving and would have preferred a nice pub lunch at the pub just next door but it was clear that she was done and not going to sit for a boring meal. We then had some down time at the caravan and when I say down time I don’t mean relaxing I mean constant play, opening and shutting doors/windows, setting up plates and ornaments on the coffee table, playing football, playing schools, playing num noms, asking for food, refusing food, asking for food – you get the picture.

At about 6pm we went to the beach as it was quieter and played football and threw pebbles in the sea before bed eventually happened at around 9:30pm. I’m not really sure what other families get up to when they go on holiday but I get the impression that a day at the beach is a WHOLE DAY at the beach however when we go out it is often a brief visit or a fixation on one part of a place because it feels right at that particular moment.

But as the days went on the sleep improved (slightly) and the repetitive play became less frenzied. She was basically relaxing. It helped that the caravan site was quite remote and had only a sprinkling of children – I think we saw about three the whole time we were there. The larger sites tend to be a baby/family magnet and unfortunately L is still extremely weary of babies and children younger than her.

L likes to be able to see everyone particularly me, she is a mini CCTV in operation. The caravan was small and you could see from one end to the other. A large apartment has more potential for the panicked ‘Mummeeeeeeeeeeeee where are you’s?!’

We shared a bed. L usually wakes up in the night (lots) and my presence helps to soothe her back to sleep. This can be hard to square off in a relationship as you usually share your bed with your husband/partner but me and her sharing was best for our situation and that’s what worked.

I think ultimately going away with an autistic/PDA child involves abandoning every preconceived idea of ‘a holiday’ you have taken in the past and becoming completely selfless. If my 20 something self had rocked up on this holiday I would have though ‘what the f@*k?!’ but life is different now. It is a harsh reality but the holiday is about them. This state of mind is difficult to accept as rightly you deserve a holiday too, probably more so than other parents. But if you give them your full attention and love they will respond by becoming more relaxed and able to enjoy it more which in turn will allow you to enjoy parts of it. Seeing your child really engage with something new or beam with pride at touching something that may have been too daunting the year before is completely worth every non pub garden with a large glass of Pimms minute.

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Me, who? Films

After my last post I felt the need to do a few mental shimmies and deep breaths.

So as a result I was thinking about things that I love and that make me happy. Autism has a way of insidiously weaving in and out of everything so it seems even harder to carve out a small autism-free window in which to do some of the things that you used to enjoy. I didn’t realise how much I missed writing and being creative until I began this blog in April. After University the joy of writing was gone and the most I had to write by hand was a shopping list. I’m an ‘old school’ notebook and pen kind of gal, a visit to Paperchase gets me hyperventilating in excitement and so I usually start my blogs by hand. The first few had my fingers and wrist aching by the end giving rise to hyperchondrial tendencies that I was harboring carpal tunnel syndrome but my hand adapted. It turns out the muscles were just underused. No drama.

As a way of indirectly getting to know more about me and me getting the opportunity to remember who I actually am, I thought I would start a series of top tens called ‘Me, who?‘. These posts will be about things I like and take pleasure from and will be a reminder for me and others that in order for us to keep going we really need to do more of what we love in order to keep from falling into that black hole of stress, internalised anger and despair. Rediscovering past passions is good for the soul and it can help you to gain a bit of perspective and for me I can honestly say that it has helped to get a little piece of ‘me’ back which I had put on hold. It falls under the category of ‘self care’ which is constantly popping up on my news feed at present so it must be worth investigating. Sometimes its about prioritising though, so instead of having a glass/bottle of wine as your default treat setting try doing something that you used to love but with a fizzy or warm drink instead so you can give it your full attention. See how it makes you feel when you go to bed and wake up in the morning. Quite nice, isn’t it?

So anyway, ramble over. My first ‘Me who?‘ is one close to my heart and if you can accept that watching and analysing films is worthy of a degree certificate then part of my degree was just that. Studying actual films. My dissertation was on female gender representation in horror films and I got to watch maybe thirty horror films all in the name of research. No I didn’t feel guilty about closing my curtains at 11am and settling down to a double bill of Hitchcock because it was all above-board and legit. I was ‘working’ hard. I just want to put this out there that I do not believe I am Barry Norman and that my choices are entirely my own and often represent a particular period in my life, fondness or nostalgia. Ok then, In no particular order…

Me who? – Ten Hollywood films I love

1 – As were talking about Hitchcock I have to include his 1960 horror Psycho. A seminal film in the horror genre. Before audiences were to become desensitized to violence and gore this film was as shocking as it gets and people were literally carried out of the cinema having fainted from the hysteria.

The film is dramatic, grisly and pioneering in equal measure. Cross dressing killer with a Oedipus complex. Go on then! As a director Brit Hitchcock was named the ‘Master of Suspense’, he utilised techniques such as the Point of View (POV shot) and Psycho paved the way for the Slasher sub genre. Love it or Hate it without Hitchcock there would be no Freddie, Jason or Jigsaw. A good horror film fires all of the senses and can leave you exiting the cinema an exhausted mess. For a film to make you feel like you’ve had a mental and emotional workout it has to be worthy of a watch surely?

2 – Baz Luhrman’s (1996) Romeo + Juliet. Ok, I admit like 99% of the world in the 1990’s I had a huge crush on Leonardo DiCaprio and spent my well-earned pocket-money on seeing this at the cinema an embarrassing four times. The soundtrack, the coupling of Leo and Claire Danes and the arty beautifulness of this film make it perfect in my eyes. Shakespeare at its most sexy and atmospheric.

3 – Quentin Tarantino’s (1994) Pulp Fiction. Uma Thurman, John Travolta and Samuel L Jackson on excruciating form. A complex narrative structure accommodating three main characters interspersed with depravity, virtue, humour and human waste overseen by Taratino’s trademark fondness of slick, sweary dialogue, drugs, guns and memorable characters.

4 – Taratino’s polar opposite – Disney Pixar’s (2010) Toy Story 3. Why 3? Well, they are ALL amazing and every watch enables you to pick out further details or peripheral animation gems that you missed previously but 3 explores themes of loss, letting go and moving on. The toys are forced to accept that they are redundant and experience an emotional journey from Andy’s bedroom via day care to their new home. The tear jerking scene at the end is just a huge emotion magnet. Pixar films are flawless.

5 – Steven Spielberg’s (1993) Jurassic Park. In 1993 this film was literally EVERYWHERE. I was 11 and everything in my life was associated with this film from the adverts between my TV programmes to my cereal to the shops or places I visited. The world had gone dino-crazy and as Spielberg was at the helm it couldn’t really fail. The recent sequels with better CGIs although reliant on style over content, are testament to how powerful this franchise is. Kids and adults love dinosaurs to ‘see’ them on the big screen is thrilling and won’t ever get old.

6 – Tim Burton’s (1990) Edward Scissorhands. I admire Burton’s dark and twisty creativity. He can make a film feel ambient and authentic and turn ugliness into beauty. Both his adult and children’s films are engrossing and the detail is breath-taking. I love most of his films but I chose Edward Scissorhands because like Jurassic Park it had such a buzz about it at the time and it really bought Johnny Depp’s talent to the fore. On paper it just sounds ridiculous but Burton weaves so much emotion, complexity and alluring visuals through it that it just works.

7 – Emile Ardolino’s Dirty Dancing (1987) Patrick Swayze is masculine and mesmerizing and Jennifer Grey who every girl wanted to swop places with make this film. Over the years I have bought the VHS, tape cassette and DVD of this film alongside watching it a few years ago at a Luna Cinema in the pouring August rain and its magic will never be lost on me. A few bars of ‘(I’ve Had) The Time of My Life’ and a swirl of emotions, thoughts and memories wash over me. Lying in bed listening to the soundtrack on my Casio Walkman, doing ‘the lift’ in a nightclub with drunken mates or buying more than one melon at a time just transports me back to that film and the songs and quotes. Escapist and uplifting.

8 – Christopher Nolan’s (2008) The Dark Knight. I don’t need to talk about this one it speaks for itself.

Heath Ledger. Batman. Nolan. LEGENDS.

9 – Sofia Coppola’s (2003) Lost in Translation. A controversial choice as on the surface this is ‘just’ a romantic comedy/drama. They are pretty much two a penny in Hollywood. However, I love this film for its slow build, Murray and Johansson’s chemistry and the teasing whisper at the end leaving the viewer wondering. It’s easy to identify with Johansson’s character Charlotte who is trying to make the most of a trip to Japan with her husband although cracks are starting to appear in the relationship and left alone for extended periods she develops a relationship platonic or not with Murray’s character Bob. This film acknowledges the anticipation and spontaneity of life and taps into emotions, perceptions and fantasies which we all experience but rarely act upon outside of our own minds.

10 – Richard Donner’s (1985) The Goonies. Classic 80’s film. I don’t know if I hold such an overwhelming fondness for 80’s films because I am an 80’s child but this decade was such a giver. Back to the Future, Indiana Jones, E.T, Ghostbusters, Terminator I could literally go on forever. Nostalgic of my childhood and nostalgic for a time before mobile phones, the internet and sarcastic irony these films are innocent, fun and had a few extra special effects to make them better than the previous decades although embarrassingly so now. At any point during a lazy Sunday you could flick through and find this film on telly and just pull up a chair and take it from there. I know things probably weren’t any safer/better/happier then but I genuinely want to believe it was and am sad that our kids today wont get to experience life ‘back then’.

I would happily sit and watch these films all day long and hope I might have got you interested in trying one or thinking about resurrecting something you haven’t done for a while. I must admit L has got completely blindsided by the second Care Bears movie at present and although it was one of my childhood favs too this post was also in part fuelled by my desire to remember other ‘proper’ films as I feel slightly brainwashed over the last week or so! Summer holidays are tough and can make parents feel burnt out but that is all the more reason to claw a few precious moments back to remember who ‘you’ are, its your summer too and like your children, it should be one to remember.

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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

 

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.

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