Is it time for your P.D.A?

Is it time for your P.D.A?
What now?! I hear you cry. Another form to fill in that seems to have slipped you by or didn’t quite make it through the ‘communication force field? No, not at all. THIS is actually a useful exercise and one that, I hope will prove insightful AND valuable.
The P.D.A or Parental Demand Audit is something that I have been working on recently after realising that despite all my reading, research and support group trawling over the last few years I have become slightly complacent. In my ‘admin’ cupboard I have a whole jute bag – one of them nice Orla Kiely ones from Tesco – FILLED to bursting with files, folders and clear plastic wallets of information, course notes on PDA and Autism that I have amassed over the years. (I’m sounding a bit OCD now). These sit alongside my other jute bags which contain appointments, reports, School stuff, DLA and EHCP information. Its an important cupboard.
Anyway, I digress. Basically, you can have reams and reams of knowledge and information on a subject but sometimes you just get that bit too close to it on a personal level which alongside real life taking over means that sometimes you get a bit complacent and cut a few corners or you slip back into old habits. The PDA way of life is quite a departure from a neuro-typical, conventional lifestyle and takes dedication and limitless patience to adhere to.  Sometimes you find you are not practising what you preach.
Since L was born I have struggled hugely with my own fears about her eating and drinking enough. Understandably so with the way things have panned out. But, I know that for a child with PDA constant demands made upon them is a recipe for disaster and I have trained myself to water down requests, refrain from questioning and bite my tongue but the mother in me is still there and fearful and desperate at times for that sip of water to be drunk or that mouthful of food to be eaten to nourish that tired, anxious body.
Recently I sat at my parents house and asked L if she wanted some popcorn. She loves popcorn and hadn’t eaten very much that day so it was a reasonable request in my eyes.
She didn’t reply.
I asked again.
No reply.
I should have left it. But I didn’t.
DO you want some popcorn? Slightly louder.
A mumbled response.
Is that a yes or a no? I cant ask again, its pushing it. I went out the room and as I started to climb the stairs to the toilet I heard my mum ask her too.
Do you want some popcorn?
Again no response.
Do you want some popcorn?
A mumble.
Was that a yes? A no? I’ll just put some out anyway then you can decide if you want some.
The popcorn gestapo was in full force.
Wow that was 8 different questions about popcorn! Even a neuro-typical child would be shaking their head in disgust and annoyance at this point let alone a PDA-er.
Leave me alone!! I don’t want your popcorn!!
I can now divulge that the popcorn was actually eaten but the scene that had unfolded had a lasting impact on me. I know that demands are anxiety producing and to minimise them reduces these anxieties and yet I’m adding all these extra little demands in unknowingly on a constant loop throughout the day.
I need a P.D.A.
Every time I caught myself ‘over asking’ things over the next couple of days I mentally berated myself and told me to shut up.
But it was prolific!!
Do you need the toilet?
Are you sure you don’t need to go?
If you try now then its done, isn’t it?
Shall I go up with you?
I’m going to the toilet, do you fancy a quick trip up too? To try? With me? Please?!! Let me do your wee for you, is that ok?!
Gaaaaaaaaaa! STOP IT WOMAN!
I need a P.D.A.
But in my defence its tricky. You see sometimes the PDA’er needs to be babied or cajoled into doing things or it doesn’t get done. EVER.
But then sometimes they need to be left well alone and operate in their own time.
But there is no rhyme or reason as to when each tactic needs implementing!
You’re in a downward spiral of what do I do for the best? And there is no right answer with PDA because it changes from minute to minute, second to second. So sometimes when I feel lost and get into a rut where I’m second guessing myself I go back to my books, my notes and my go to blogs and refresh myself.
A LOW DEMAND ENVIRONMENT is the most beneficial.
Don’t sweat the small stuff. Life will not hinge upon the eating of a bowl of popcorn.
TRUST THE CHILD/ADULT TO KNOW WHAT IS BEST FOR THEM
STEP BACK AND ALLOW THEM TO FIGURE IT OUT
But be there waiting in the wings should you be required.
REMEMBER THE DIALS (Christie and Fidler)
When anxieties are lower, turn the dials up gradually and push the boundaries a bit more, but when they are high dial back the demands.
LIFE IS COMPLEX WITH PDA, do not blame yourself, you are doing the best you can.
REMEMBER TO HAVE A P.D.A every now and then because like an M.O.T for a car or an insurance renewal, before you know it them demands can really creep up on you.
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Stick or Twist?

When you are four or five years old you start School. Its a given.
You went to school.
Your parents went to school.
People will be going to school for years to come.
It is the academic and social passage through childhood to adulthood which equips you with all the skills needed to successfully navigate society and be employable.
IT IS THE LAW.
Until recently I have never questioned this fact.
I went to school and was one of the lucky ones. I enjoyed the majority of it. My Primary school years are viewed back through rose tinted glasses. Everything seemed like an adventure. I felt safe, I had friends, I played chase and Thundercats, I had play dates, I went on School trips. I joined Gymnastics and Brownies. Life was pretty good. Secondary school was on the whole OK. I loved English, Geography and Languages and hated Maths, Science and Swimming. I was more aware of the dynamics of socialising and witnessed and experienced strong bonds, bullying, the pack mentality especially in P.E lessons and break times, losing friends, changing friends, being included, being left out, wanting to conform, being secretly in awe and intrigued by the non conformers.
I had a child. They struggled with socialisation. But age four came around and school started.
I think back to my own time at school and what I learnt.
At Primary I have no recollection of learning to read or write only vague flashbacks of reading aloud to another person on my own in guided reading or a test – I’m not sure. My memories are more visual and sensory. They are the visit to an African Village, banging the smoothly worn leather drum in a rhythm, eating black eyed beans which had been roasted on a long bamboo stick in a fire. Visiting a mock Tudor village and hearing the old English accent, smelling the syrupy oats of the flapjacks they were baking. My year 3 teachers’ interest in cross stitch where the whole year seemed to be filled with threading needles and creating cross stitch calendars, holly wreaths and decorations. My Year 4 teachers’ interest in nature, walking up and down a corridor filled with plants and smelling the strong scent of geraniums getting hot in the sun. A trip to a river, a Victorian museum, two holidays by the seaside. All my memories are of doing and seeing. I know that the senses harbour stronger recall than the more mundane but they also provide a wealth of learning opportunities.
I’ve come to question the belief that learning can only happen successfully within a school classroom.
At secondary school, aside from two field trips in Geography which I loved and a trip to the Science museum all I remember is sitting at a desk with a text book, turning to page X and copying. Memorising prescribed texts in order to regurgitate it under exam conditions. Secondary seemed more about navigating people and remembering the right thing on the right day and carrying a diary around with you. Staying out of trouble academically and keeping a low profile socially.
Schooling has changed since I was there.
It is constantly changing.
The National Curriculum was introduced in 1988 and has morphed progressively since then. I managed to experience a few years of schooling pre-Curriculum which was more topic based and which is still revered by some to this day as being a more organic, child-led vehicle with the teacher being allowed more autonomy in guiding and planning work for their class as interests arose. This is evident in the cross stitch and gardening memories I have where that year I learnt above and beyond in those subject areas driven by the teachers interests and enthusiasm. Would cross stitch find a place in today’s primary curriculum?!
The National Curriculum was developed to create an educational framework which all children across England could follow, providing a ‘broad and balanced’ education that contributed towards their ‘personal, academic and professional learning and development.’
If a child moved schools then, theoretically they would be able to pick up where they left off. In order to ascertain if the curriculum was ‘fit for purpose’ statutory assessments were rolled out between 1991 – 1995, gaining momentum over the years to become the now infamous SAT’s tests, the markers of progress and success and alongside attendance figure and Ofsted reports, the grading system of Education.
Schools can be Outstanding, Good, Requires Improvement or Inadequate (Failing). You can have outstanding teachers at inadequate schools and vice versa. Admission to school is primarily a postcode lottery after children in care, disabilities and siblings are taken into account. The variables which feed into a school year, a single class are vast and each class in each school will have a different dynamic which will change over time.
I had a child. They struggled with socialisation. But age four came around, the application process was entered into and a school subsequently started.
BUT
What if the school your child finds themselves in doesn’t work for your child? What if the School system doesn’t work for your child?
Where do you go from there?
I’ve come across the square peg in a round hole analogy a lot over the last few years when reading about autism. Schools wants their round pegged pupils to fit nicely into their round holed classes. And I can see how this logic came into being. Thousands of children come of school age each year and need to be processed through the system in order to come out the other end a fully functioning product.
Logistically, it makes sense to apply rules to this epic task. Age boundaries, a standardised curriculum, a timetable, fresh air occasionally and a bit of fun now and again. Its not worth reinventing the wheel every year so what worked once gets repeated or tweaked and from time to time something momentous will happen so the big bosses will filter down new initiatives which have to be absorbed. If we were looking solely at results you would agree that it works. The vast majority of pupils come out of the system functional and ready to go. Myself, a case in point. And everyone lived happily ever after, The end.
Except no. Having a ‘square peg’ has opened my eyes to the minority that can’t or don’t fit the round holes. They are there in full view but strangely you don’t really ‘see’ them until you are one of them or raising one of them. And they need to be talked about. LOUDLY.
Schools are severely underfunded and over stretched. How much difference would it make to our society if each class could have two or three LSPs, to manage holidays, training or sickness, an admin assistant per year group to alleviate admin for the teachers and a technician to prepare art, cooking or gardening lessons which are so so important to our well being. I know this is complete ‘pie in the sky’ thinking but could you imagine how beneficial these extra support jobs would be for all our children? It might even help towards stemming the ‘Great Anxiety Epidemic’ adults and children are finding ourselves in and provide better foundations and more time to stop and stare.
Teaching would be a more attractive career path and creativity would increase as the burden of all the other ‘stuff’ would be delegated.
The Education system is stuck in the past. The SEND system is on the brink of collapse, just as we need it the most as more children are coming through with additional needs.
So what are the choices?
There is provision for special needs children. There are schools, there are policies and procedures but they are clunky and archaic. There are gaping holes and shortages. You don’t even need to scratch the surface very hard to see these faults. The majority of our children are OK but there is a large minority who really are not.
Systems are flailing and stuck. Governments are flailing and stuck. The School system is flailing and stuck.
As I see it, today in England, the options are;
Mainstream. If it works, great if it doesn’t buckle up for a bumpy ride.
Mainstream with an EHCP. If it works great, if it doesn’t you will need to fight to make it work or attempt to secure a place in specialist provision. However, unfortunately there aren’t enough schools and the good ones have huge waiting lists so good luck with that.
Specialist provision with an EHCP. If it works great, if it doesn’t try another one. Cue another battle.
Home education. When everything else doesn’t work or your child cannot cope in a school environment. This can be an elective or forced choice.
Alongside all this you might experience school refusal, exclusions, reduced timetables, epic waiting times and cat and mouse style administrative wars, off-rolling, violent and challenging behaviour, mental health issues and/or family breakdown.
Ok, looking at it objectively, Autism is a highly individualised condition. How could a school possibly cater for a number of autistic children across the length and breath of the spectrum? Its already widely documented that teachers workloads are too big and many are leaving the profession due to the stress and pressure. If its hard to cater for the majority then how can the minority possibly stand a chance? PDA is a relatively ‘new’ condition, originating in the 1980’s and hasn’t been widely filtered through or accepted yet. How can a PDA child possibly find the right ‘fit’ if the system isn’t even geared up for them yet?
But Education is a right in this country and every child should be entitled to full time local provision which meets all their needs and realises their full potential. They should be able to accommodate them, shouldn’t they? But they can’t. It seems that for highly anxious, demand avoiding kids provision doesn’t exist or is limited to a small handful of places across the whole country such as Limpsfield Grange.
I’m sure there are amazing schools and some children are extremely settled and happy there but through a lot of digging I have only found a tiny handful. I wanted to make this post more diplomatic but the truth is the Schooling system in England has left me feeling disillusioned.
However…
Things are conspiring in modern society to make minority voices heard. Social media is giving people an instant and more visible voice and creating awareness and understanding. Research into PDA is finally being done. Next generations coming through are not impressed with what their parents generations have left for them and they are more vocal and angry than we were. Disability awareness and specifically Autism awareness is finally spreading and infiltrating our systems. More people are being diagnosed as knowledge and experience increases. Autism parents are feisty. Believe me, and although it is depressing and draining these warriors are speaking up and challenging the system on a daily basis to try and change things for their children and future children. A march is taking place on 30th May 2019 to highlight Hertfordshire’s SEND National crisis and similar are being organised across the country.
Its a long process but the cogs are slowly turning.
For now I feel that we are at a cross roads in our educational journey and although I know that the best case scenario would be an inclusive, flexible, nurturing setting with high staff to child ratios, an abundance of LSPs with an emphasis on physical activity, nature and creativity I know that that is a fairy tale. Do we stick or twist? I’m not anti school in any way as I said I enjoyed my experience and it is successful for the majority. Lots of fantastic teachers do the best they can with the resources they have and the constraints they are put under but I am anti ‘the system’ as it is destroying the spirit of so many vulnerable children and in turn their parents or carers and it is just plain wrong.
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Appointment

Come in please.
Hi.
How can I help you today?

I’ve not been feeling great lately. Anxious. I’m having trouble sleeping.

That sounds difficult.

Its affecting my relationships and I don’t want to go to work anymore. The thought of leaving the house it makes me feel…panicky.

Have you had any of these symptoms before?
Yes, for the last three years. I was diagnosed with depression and anxiety last year.

Oh I see…
Everything just seems to be getting on top of me. I’m not enjoying life I’m practically existing really.

Interesting. Ok well this all sounds very difficult to deal with and I imagine must feel tough at times.
It is. It took quite a lot of effort coming here today. I don’t really like talking about it. But its just got too much. I need to get some support maybe.

Hmmm. Well I can hear what you’re saying but I can’t actually ‘see’ any of these symptoms here today.
Right…

You ‘seem’ ok, a healthy weight, neat in appearance, your speech is fluent. Let me check your temperature.
Perfect.

And let me feel your neck.
Fine.
I’ll just shine this light into your eyes…and open your mouth.
Yes all clear.

Everything seems fine today. Perhaps if you still feel the same in two weeks come back and we can check everything again?
But, this is the third time I’ve been back this year.

Hmmm, yes I can see in your notes. Similar symptoms but again all preliminary checks showed good health.
I’ve been keeping a diary perhaps this might help explain things better. I’m not very articulate at the moment I find things slip through my mind before I can keep hold of them. But writing them down helps.
Hmmm, yes I can see there are lots of entries here.

Ok, let me play devils advocate, what would you like me to do for you today?

Well I thought that as I had been diagnosed with depression and anxiety last year that maybe it had returned or I might be going through an episode at the moment. I’ve heard that CBT or going back on medication might help?
I see. Yes a lot of what you’re saying does indeed point to a mental health issue but unfortunately as you are not presenting these symptoms here today I’m afraid my hands are tied.
Perhaps if you try some gentle exercise, healthy eating and get plenty of rest it might help?
Right ok, maybe I haven’t been doing that enough lately, you’re right.

Is that all today? I’m afraid the appointment has gone on a bit too long. In future it might be wise to book a double appointment if you feel that your problems may warrant an extended discussion.
So I should just carry on as I am?
I think that’s for the best, although if any of these symptoms do get worse of course make another appointment.

Thanks.

Thank you.

*Please note this post is a hypothetical dialogue drawn from a combination of experiences and feelings.

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Bells and Whistles

I was sorting out my bedroom cupboard recently and came across Ls baby memory box. I suddenly had a vision of L at 18 looking at the box frowning and saying in disgust “for crying out loud! Where are my baby mile stone photos?! EVERYONE else has them!!”
You see, I have quite a few hang-ups about Ls birth and the intervening ‘blur’ years. I couldn’t manage to organise important life admin tasks such as birthday cards, renewing car insurance or paying the TV licence on time let alone all the bells and whistles of modern parenting these days. Baby Mile stone cards, personalised wall art, photo books, homemade birthday cakes, fancy name labels – the list goes on.
I actually think that some of these things are lovely, I’m not anti at all but over the years all these extras have been grouped in my mind with the birth guilt, the premature guilt and the failing at life guilt. When I see a baby milestone ping up on my news feed my gut reaction is a stab of jealousy mixed with guilt, indignation and sadness.
I didn’t get to experience many of the nice new born baby things with L.
I didn’t have a baby shower as she arrived 6 weeks early in a blaze of panic. I hadn’t had chance to buy many of the ‘big bits’ such as a cot as I was too scared of something going wrong. The nursery was not ready as in my mind I still had 6-8 weeks left. I hadn’t nested or bought any milestone cards, books or photo frames.
Instead I took a few photos here and there and had a mass printing session one day then stashed them in a drawer forgotten until last year when I finally got round to filling one baby album. Along with the memory box, the album was bought for her first birthday by someone more on the ball than me.
Ls first photo is quite private and wont ever be displayed. The staff at the Special Care Baby Unit took it at the time of her birth not knowing quite what the future held.
It still feels painful to look at it.
I couldn’t keep many of Ls baby clothes as when they were sorted out a few years ago the reflux stains on all the collars had turned a rather fetching luminous yellow. Other items had been worn so many times they weren’t really ‘keepers’.
This weekend we went clothes shopping as L has really grown recently. As I stood in Primark measuring a pair of trousers against her growing legs and realising that she had jumped from an age 4-5 through a 5-6 all the way to a 6-7 I felt like my red book moment had finally arrived!
I suddenly identified with all the proud parents at baby clinic marvelling over how many pounds little Johnny had put on this week. As we tracked the preemie percentiles and struggled with feeding, weigh ins were usually tough. Whilst L kept the same clothes for months on end, Id home in on other mums discussing how fast little Janet was straining through all her dresses and secretly longing to need to buy bigger things.
At the start, all the firsts were behind everyone else’s. First smile took a while to get going although to be fair I think the reflux and lack of sleep was probably making her pretty grumpy. I’m sure my own face wasn’t exactly a ray of sunshine every morning. Then as the months rolled on the first inklings of autism or communication issues started to arise.
I can be objective now, nearly six years down the line, I can accept that ‘things happen’. I have read other peoples stories. Voraciously. I have listened to other peoples stories, some less difficult than mine some incredibly more so and I have even found one that was scarily identical. I have hungrily hunted down what ifs and reasons, causes and experiences in parts of the internet that take lots of digging and clicking to unearth. Lots of people experience birth trauma. But back then, I couldn’t be objective. It felt personal.
Extremely personal.
It is a lot to unpick and aside to say that time has been a healer there is no short cut to acceptance.
I am instead proud of what I did achieve. I was present through all of it. Every day.
She doesn’t have a full set of baby memorabilia but she had all my time, my care and my trust. I did the best I could with the knowledge and experience I had at the time. I could play the anti consumerist card or use the magic of the internet to retrospectively try and piece the missing items back together but I’m not going to.
Her story was unique.
She was a fighter, a miracle survivor and that story alone is better than a full compliment of baby milestone cards any day. Although I have decided that I am going to give the birthday cake a shot this year as I don’t want Tesco to have anymore glory.
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A belated Introduction

When I began my blog back in April 2018 I didn’t think it would amount to much.

Most of my day revolves around sleep deprivation, trying to think up autism friendly snacks and meals, poo, wee, playing with my little pony and sighing heavily.

Not very news-worthy stuff.

I’m not very technical, I don’t have a background in advertising or any form of social media expertise aside from scrolling through Facebook. I didn’t even own a computer. Although I do now. Thanks Santa 🙂
I have huge self-esteem issues. I have a very negative outlook and think everyone else is better than me, more deserving and extremely competent. I am however trying to be a more positive person, resilient and hinged as I feel like I’ve spent the last five years of my life seriously unhinged, out of control and on autopilot.

On desperate nights and snatched moments in the day I have followed peoples blogs, mainly autism ones and they have really helped me to feel less alone and hopeful. On top of being an autism parent I have suffered with anxiety and depression since my teens. Not a good combination. I touch on this side of parenting too because it can make a difficult job seem impossible at times.

In the last year I have written over 20 posts predominantly on living with depression, self-doubt and anxiety whilst navigating parenting an autistic child. It has been quite a steep learning curve. Understatement. But, through writing it all down I have found it to be cathartic and have connected to lots of parents and other bloggers which has helped me feel better within myself. I have even learn how to do a bit of ‘stuff’ on social media.

I am a full time carer to my daughter but forever hopeful that I might find a very flexible part time position in the future. I am an 80’s child, broody for a puppy and love film and reading with a particular passion for psychology, horror and autobiography. I am sober curious, mindfulness curious and exercise curious and like to peek into these worlds occasionally.

Give me a Stephen King, a sun lounger and a low alcohol cocktail and I’m a happy soul.

Hi, I’m Becky by the way or ‘PDA bubble’.

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Identity

I’ve become a bit obsessed with Identity recently.
Over the last decade or so I’ve struggled on and off with my own sense of identity. Looking back I have been a sheep, allowing myself to be heavily influenced by others and the media whilst playing down parts of me which I didn’t feel were very impressive. I wasn’t aware of it at the time and believe that most people must experience it to a certain degree in order to fit in but perhaps I did it to excess. From copying an outfit that someone else had on in the hope that some of their sass and confidence might rub off on me to copying someones voice or laugh because it sounded older, more sophisticated or funnier. When I think back there seems to be quite a few times where I looked to others for guidance and approval not for a moment considering what I liked or really wanted deep down.

As I got older identity came with achievements, learning to drive, jobs, relationships and amassing ‘stuff’. If I buy GHD straighteners as opposed to these cheaper ones then my hair will look better and I will be in the GHD club able to discuss their merits and marvel at their smooth sleekness. The fact that I couldn’t and still can’t use them properly was clearly not an issue back then!

When you lose a sense of your identity you are more susceptible to external influences such as the media and marketing. You seek reassurance from others and want to know their opinions before you trust yourself enough to make a decision.  In ‘Notes on a Nervous Planet’ Matt Haig explains;

‘Happiness is not good for the Economy. We are encouraged, continually, to be a little bit dissatisfied with ourselves.’

If you are already faltering with your sense of self then shiny empty promises are going to seem very appealing. This is part a generational issue, as the internet, covert marketing and social media have proliferated we have been the guinea pigs, present for all the technological advances and benefits but only in hindsight discovering the psychological and emotional effects. This week I keep seeing adverts for Cliniques newest product range ‘ID’ where you can customise their moisturiser to your specific identity. Being secure in your identity and deserving something tailor made to that uniqueness is clearly a strong selling point. Those lacking in identity or self are clearly ‘disadvantaged’.

I’m familiar with certain life landmarks acting as a catalyst for a re-evaluation of self. Usually the end of a long term relationship, becoming a first time mum or the famed ‘mid-life crisis’.  January is also another popular time for embracing change and locking down bad habits or behaviours – which is why my obsession has probably had room to grow recently.
I had previously thought that my identity crisis began after I became a mum. Its pretty common to feel lost when you are spending more time at home, alone with just a baby. Once I left work and saw my friends less and no longer had the time to align myself with constant ‘stuff’ I felt myself fading. Add to this recurrent depression and anxiety and a child with Special Educational Needs who doesn’t enjoy socialising and you can see how the crisis spirals.
But the baby wasn’t to blame. The issue had always been there lurking in the background.
A baby can commonly highlight fault lines in a relationship and cause tensions to come to the fore which were always present but which weren’t problems when the environment wasn’t quite as pressured. Similarly, having a baby exposes flaws in your relationship with yourself and can be hard to accept when that relationship isn’t a good one. No one is immune to these realisations.

In Lily Allen’s 2017 autobiography ‘My Words Exactly’ she refers to her different identities and losing and gaining new ones. There is the invisible young Lily living in the shadow of her famous parents and striking elder sister, Teenage Lily running with a close clique of friends whilst moving from School to School never settling and befriending an older crowd. ‘Cartoon Lily’ – the media caricature – drinking, smoking and taking drugs stumbling around Glastonbury. There is Lily Rose Cooper, her attempt at creating a settled, sorted ‘married with kids’ persona, then Lily on Tour where she works hard and plays hard to avoid difficulties at home and feelings swirling around once she becomes a mum.

I enjoyed the book and found it refreshing to hear someone like Lily, a complex and interesting character of a similar age to me talk in such depth about these feelings.

Being brutally honest with yourself is often the first step towards self awareness and changing habits for the better.

Then recently, James McAvoy has been promoting M. Night Shyamalan’s (2019) film ‘Glass’, part three of the Eastrail 177 trilogy. Returning to the role of Kevin Wendell Crumb, a disturbed man suffering from Dissociative Identity Disorder (DID) with 24 different personalities ranging from Hedwig a nine year old boy to Patricia a matriarchal figure to The Beast a superhuman killer.

At times I have struggled to identify one single personality within myself and from the outside looking in would imagine myself as an extra in a film or a shell of a human, real on the outside but empty on the inside. But then I thought about it some more and started to recognise personalities I have assumed over the years and these ranged through mum, daughter, child, teenager, friend, girlfriend, colleague, depressed, social media version, external and internal portrayals etc etc. Spookily I came up with 24 in total just like Kevin!

Essentially the personalities are created to protect Kevin who was abused by his mother as a child as seen in the second film (2016) Split.  My identities over the years have existed to protect me, sometimes aiding me in a social situation sometimes at a cost emotionally or mentally. Autistic masking serves a purpose but the comedown and subsequent need to regroup can damage the person without them even realising.

 

So what can we do when we are feeling lost to help ourselves?  From the reading I’ve done the last few weeks it seems identity isn’t so much the problem as this can be fairly fluid and will shift and change depending on who we are with, where we are and what we are being influenced by. One less thing to get hung up about! It is more our self esteem which needs the support and attention.

It leads back to the idea of self care which I often talk about in this blog and which seems central to the reduction of negative thought processes.  In order to help bolster our self esteem and be more accepting of ourselves we need to focus on the now. Letting go of past identities, curbing future projections of what we should/could be and using today, this moment to be fully present. This could be as small as spending 5 minutes on your own, lying or sitting down if possible and just breathing, reading a book or practising self compassion and starting to challenge some of those negative thoughts and self talk.

So who am I now?

I’m finding out a bit more each day.

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Brick walls

Thoughts are powerful.

If you think about something often it might happen.

If you think about someone they might appear in a dream.

If your thinking assumes a specific mindset then its hard to adapt that mindset.

But thoughts are not facts.

Thoughts can be fluid.

This week I got to cross off another fear on my list. The broken limb fear experienced back in May was just about dulling in my sub-conscious and even though it was every bit as stressful as I had imagined and I do not want a repeat any time soon…

we got through it.

This time the fear was smaller but no less petrifying. Nits. Nits and a PDA-er who routinely refuses to brush, wash and dry her hair. It was stressful and time-consuming and never-ending at times but…

we got through it.

A strange thing happens when you manage to overcome a fear. Your resilience is bolstered and after the initial low can give way to feelings of euphoria and invincibility. When you suffer enough setbacks, fear tends to lose some of its shock value and instead of crumbling each time you find yourself just dealing with it. A place you never thought you’d get to.

I have lived most of my adult years in fear of the ‘what ifs’ whilst simultaneously indulging, obsessing and inviting them into my thoughts each and every day. If the time I have spent worrying about broken arms and nits over the last five years had been condensed down into a drama series it would include at least six hour long episodes (no adverts).

Nits came and went (fingers crossed) and took up a 36 hour period.

Then life moved on.

For me, SEN parents and a lot of our children with ASD and anxiety it is the all consuming fear of the ‘what if’ and the ‘unknown’ that causes so many problems.

I’m in my 30’s and can honestly say that until L was diagnosed, and I started to try to unpick some of her behaviours and worries which then instigated some of my own thought analysis, I didn’t realise the extent to which I struggled with the whats ifs and not knowing. I just thought that everyone worried a lot, like everyone has a mobile phone and likes Pringles.

 

I’m still trying to get my head around why I think the way I do and consciously choose behaviours which help instead of hinder but yet I still have the audacity at times to feel frustrated with L at just five years old when she can’t ‘deal’ with her own worries. If I’m being completely honest with myself my attitude and behaviours do impact on L. The moment my stress levels start to climb, her behaviours start to deteriorate. Sleep is more disrupted. Reassurance is needed in greater amounts.

L is a work in progress and although I know that I have the experience to help her in the future should she have some of the same problems I have had she may not want my help. Hopefully she may not need it. So I’ve come to the conclusion that in order for L to be able to cope with the hand she’s been dealt and for me to take control of my depression I really need to sort myself out first. I’m her biggest role model and corner-stone and so far when times get tough I model;

STRESS – Snapping, head in hands, ferocious displacement cleaning

PANIC – ‘I can’t cope!!’ ‘I can’t do it;

ANXIETY – taking 2 hours to get to sleep worrying about the ‘what ifs’

COPING MECHANISIMS – Sleeping, alcohol and unhealthy food.

Not a great model. Has it got me very far? No, not really. It enables me to keep functioning but functioning isn’t the same as living.

Clearly if you are predisposed to negativity and anxiety it takes a long time for change to set in and healthier habits to be adopted. But…

I know alcohol makes my anxiety worse.

I know hiding at home and crawling into bed just prolongs the anxiety.

I know that taking care of myself, exercising and eating well improves my mood.

However, left to my own devices I have the bottle of wine, I lie in the bed and I eat the Hula Hoops. I’m referring to longer term depression and anxiety in adults here not short one or two off episodes. The type of depression which hangs around like an old coat at the back of the cupboard which may be required one day but could also do with disappearing from your life completely.

How many times do you keep hitting the brick wall before you decide to change your approach to it?

The adage ‘If you do what you’ve always done you get what you’ve always got’ echoes through my mind over the weeks. It might be enough to motivate me to ‘start a healthy week’ on a Monday, or not drink until the weekend but as soon as the what ifs and a faint trace of drama shimmers on the horizon the emotional crutches are well and truly out out.

If you are lucky enough to actually get Mental Health support via the NHS, talking therapies or a local charity it is usually beneficial however you cannot lean or rely on these services. They aren’t about at 3am when you are having a panic attack over whether you will make it to work in the morning. They are short-term solutions to help ground and redirect you.

Essentially YOU are responsible. They can give you tools and suggestions but there has to be a concerted effort on your part to facilitate the change.

Weigh up what is worth putting more effort into. Buying new super springy trainers to help you run harder into the brick wall or do a bit of background work and find another way round? I do love buying a new piece of gym kit for it to stay safely un-creased and sweat free in my bottom drawer.

Things to help me.

Being Honest with myself

Am I happy with how things sit with me at present? Are my moods impacting on the family? Is part of the problem the way I deal with things? This isn’t an opportunity to blame its an opportunity to help improve things mentally and emotionally which will then impact positively on the rest of the family and your mindset.

Being kinder to myself.

If like me your internal voice talks to you like a condescending, mean and sarcastic bitch. Get a new one. I’ve read many self-help books and they consistently feature this idea of self-love, talking to yourself like you would a friend or being more compassionate. I’m extremely guilty of walking around whilst mentally assaulting myself. Self love seems so cheesy and pretentious but replacing 15 years of ‘get up you useless, lazy waster’ with ‘ok, now we’ve had a nice rest haven’t we?, let’s get up slowly, take a few deep breaths and focus on one thing at a time’ is infinitely better for your long-term self-esteem.

Acceptance.

No, these things don’t just happen to you. They happen to everyone but because you are only you, you only get to see them close up happening to you. The universe doesn’t have time to pick and choose who ‘these things’ happen to it is random so don’t waste time playing the ‘poor me’ card. It doesn’t get you anywhere faster or make you feel any better.

Why can she/he do it?

Why can she do it when I cant? Her life must be easier than mine, she must be richer or have people helping her. Although it seems ridiculous to say, being anxious or depressed is sometimes easier than changing negative behaviours. It can become part of your personal narrative and you become type cast as ‘the depressed one’. Negative behaviours take a lot of time and effort to re-work. If you continue to follow the path of least resistance then you will remain on that path. She can do it because she worked hard to get off that path and found a different one.

I recently got into a massive downer about how ‘I’m obviously not good at having children’ ‘was doomed to have problems in my pregnancy’ ‘had a hard time when my baby was born’. The catalyst of this was reading a handful of magazines on a Saturday evening which was ironically supposed to make me feel better and seeing an interview with Sophie Ellis Bextor explaining how she is having her 5th child next year. Fifth! I skimmed over the article and just used it as ammo to fuel my ‘you’re no good’ fire. Plus she looked gorgeous. Urghhhh.

I probably returned to that conversation with myself ten times over the course of the next day until part of me wanted to know the names of her children admittedly for reasons of ridicule to make myself feel better and googled her. I then uncovered the fact that her two first-born sons had actually been very premature and she was now involved in a campaign with Pampers to provide preemie nappies for hospitals and supermarkets. I completely changed my mindset about her and could see that it wasn’t ‘just me’ who had these problems, other people experienced them too. I keep reminding myself to look outside my self when I’m on a negative self talk trajectory because you can’t judge a book by its cover so to speak.

A lot of celebrities have depression and anxiety -why? when they have everything they could possibly want? Because mental health conditions affect everyone, because mental and emotional health are caused by a number of contributing factors and no-one is immune. Prince Harry, Ruby Wax or Stephen Fry have access to all forms of treatment with no monetary or time constraints but they still suffer. To the outside world their lives couldn’t look any better but long-term depression and anxiety exert a strong grip and although 50% of tackling the problem is the support and the services the other 50% is the individuals personal struggle to make sense and navigate around it. It has to come from the person – maybe more so. Sadly people do succumb to depression and the recent examples of Robin Williams, Gary Speed and Dolores O’Riordan show that it can be hidden from view yet very much impossible to live with in extreme cases.

Exercise

When it comes to exercise I am particularly demand avoidant. Lots of people are but I know that this is the key to helping me move round the brick wall. However I have a great card to play, the ‘I’m too busy/stressed/bogged down in autism’ card which validates my no exercise situation. But I’m not really being honest with myself here. I do have some time. I have scrolling through social media time, I have reading books time, I have watching Lorraine and Homes under the Hammer time. So what I’m saying really is that I don’t think exercise is important enough… to make time for. But I know deep down that I don’t feel that way. I would very much like to exercise. My excuses are starting to look a bit cheap and flimsy now.

Alcohol  

Some people can drink and the benefits outweigh the negatives. Mine don’t unfortunately. This is another key to getting round the brick wall. Like the exercise excuses I use alcohol as a treat to validate ‘tough days’, everyone does it. Its quite a big thing in this country. I’ve spent twenty years ‘doing it’ its been so successful that’s why I need to carry on. But has it? No, it hasn’t. The time wasted due to epic hangovers and anxiety from alcohol must surely be measured in years by now?! Alcohol is a good temporary fix but to get over the wall perhaps it needs to be replaced with something else? Or at the very least reduced.

The procrastinator within keeps goading me to wait until 1st January to start using these keys because its a nice starting date, its fresh, it’s what everyone else does. But change doesn’t have to attach itself to a date or a day to be significant it just needs to start and now. Everyone else isn’t me and frankly I don’t care about everyone else anymore.

I know this has been a bit of a self-indulgent post but I’ve really been thinking hard lately about the future. Do I want to be this person in another 5 years, another 10 or do I want to go around the brick wall and start living. There is time to grieve for what didn’t quite measure up to expectation and there is time to be angry and time to be sad but if I’m going to keep going I really need to start being braver. Being scared isn’t the same thing as being unable to do it.

Basically, I don’t want to waste anymore time being HERE.

brick