Star

PDA is a rattle snake clicking and pulsing in the corner

PDA is being on guard 24/7

PDA is heart stopping terror, a rush in a suffocating hot night to try to ease them through an episode

PDA is pulling the covers off their six year old head as they try to wrap it tighter round themselves

PDA is lying awake for a long time after processing and worrying

PDA is wondering if it was a dream or real

PDA is fear always fear

PDA is brutal

PDA is hardcore, extreme and graphic

PDA is unconditional love

PDA is wishing for a role reversal to impart some wisdom and make it better

PDA is twinkle twinkle little star how I wonder who you are?

Photo by 嘉淇 徐 on Pexels.com

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Suck it up

The pink and purple cup collided with an elbow and tipped over before finally undulating back and fourth on the tablecloth. Milk bloomed into a large puddle, which grew stealthily wider until cascading over the edge. Liquid pooled on the seat fabric before hailing down on the floor in a staccato beat. The quantity of liquid seemed to have mysteriously quadrupled in its downward trajectory as the splatter circumference was vast and all reaching.

The second cup of milk already today and its only 9:00 am.

BLACK.

A deadly female protagonist, I glide into the dingy saloon bar navigating the layout with calculated ease. My black dress billows and swishes around me as I cut across the room, light jazz music playing in the background. The bar tender glances up from polishing his glass and tips his nose up in a questioning fashion. “Red wine” I demand. Without breaking eye contact he reaches for an open bottle on the bar and slides a glass towards me. Slowly the bottle turns upwards and the glossy red fluid glugs out satisfyingly. I snatch the glass up and take a long slow sip, savouring the warmth and spices over my tongue as I close my eyes. Then he is gone.

Suddenly a fury rips through me. I toss the glass over my shoulder and hear the smash of glass and wine litter the floor. Suddenly I am possessed. I grab the bottle of wine and pummel it into the bar, shards ricochet off the dark wood and the base catapults sideways.

I take in the impressive display of bottles against the mirrored wall, vaulting over the counter neatly before I’m even aware I’m moving. Gin’s and whiskey’s collide and mingle as splinters, slices and chunks of glass rain down on the floor. Vanilla, juniper and tobacco plumes from the debris and in a frenzy I spy a broom resting innocently against the door frame. I seize it and begin to joust and swipe all the remaining bottles off the shelves. The floor is beginning to resemble a mosaic of browns, greens and blues. Suddenly I am face to face with my reflection in the mirrors. I don’t recognise myself, my hair is wild, my skin flushed but most of all my eyes look eerily vacant.

I strain to hear if anyone is nearby but am met with silence followed by crunching as I release all the tension stored in my body along with a deep breath departing from my chest.

A box of matches is tucked safely into the corner of one shelf. I toy with the idea for a split second before seizing the box and striking the first match. As it fizzes and balloons I manouver around the bar catching my eyes again for the last time before pitching the match squarely at the most sizable pile. I watch with pride as the flame ignites and glows under the first bottle. The colours flit from yellow to blue to orange and I take it all in hungrily. Then I make my break, bounding across the bar, disappearing out of the heavy swing doors as the flames start to smoke and engulf the room.

BLACK.

I grab a kitchen roll and scatter sheet after sheet over the milk, watching the paper change from dry to wet then sodden. Like the kitchen roll, I absorb the spillage, I suck it up. Because, I can’t lose it over something so trivial, I have to save my anger, frustration and despair for bigger battles like running into roads and dealing with EHCP applications.

But all that emotion is still there, I’ve just learnt how to channel it internally and attempt to deal with it at a more convenient time. A run, a spring cleaning session or singing loudly in the car. However the calculations aren’t right because the load waiting to be released is now a hundred times larger and proliferating. Fantasies like the one above are my quick mental loopholes where I can gain a form of control over what is happening without allowing myself to feel like a constant victim.

The only way to survive these flash points is to adopt an almost robotic mental state where routine and consistency are unwavering and emotion is null and void. Should you allow your own ‘baggage’ to seep into play then the game is over and anything could happen.

I am finding things tricky at the moment. We are on a reduced timetable which I am pleased about as it is allowing L to reset and take things at her own pace – slowly and gradually – as and when she can cope. It is going well. The pessimist in me thinks too well but as a consequence we are spending practically all day everyday together. School based anxiety has reduced dramatically. It is still present each and every day but nowhere in the same league as before. Life anxiety is however still very much with us. There is no quick and easy solution for finding the perfect balance for a PDA child.

But, I am having to dig deeper than ever before in my patience reserves and combined with the intense role play, unrelenting need to be on the go and mood swings, my own head is getting slowly more frazzled. I often find the biggest irony with parenting autistic children is that your own mental health needs to be immaculate, SAS level complicit and Zen Buddhist calm. Yet everything – including the kitchen sink in some cases – is thrown at us to rock these foundations. Lack of sleep, lack of respite, high level ongoing stress, judgement, violent and challenging behaviour, low self esteem, anxiety and comparison to name but a few.

We are in the position that a reduced timetable is actually wanted but I keep thinking about the families who have this forced upon them due to behavioural issues at school. Is anyone supporting these parents at home trying to make sense of all of these intense emotions along with the childs?

For now all I can do is suck it up, trust that it is helping and hope that in time things will move on. In the meantime I am trying to work on my mental health and anxiety and try not to let my avenge fantasies get out of control.

PDA week

I never envisioned that the acronym P.D.A would mean so much to me and the course of my life.

Six years hence the term was merely an association with gossip magazines and the Daily Mail online. Visit the website on any given day and someone famous is enjoying, packing on, or frolicking in the sunshine ‘PDA style’. Today, it certainly feels ironic that the term is still best know for ‘Public Displays of Affection’ – yet couldn’t be further from the reality of the condition.

PDA. Our PDA. Stands for Pathological Demand Avoidance.

PDA has featured prominently for me this week with PDA Day on 15th May, the B.A.P.s Awards on 16th May which recognise Special Needs bloggers, which I attended as a finalist in the Newcomer category alongside other PDA bloggers (no PDA awards on the night but an honour nonetheless) and the PDA Action ‘PDA Conference’ held in Wolverhampton today. So I thought I would write a post about how it came to be so pivotal to me and my family. I had hoped to get the piece written in time for PDA Day itself but, well P.D.A got in the way!

When people ask me ‘what is P.D.A?’ and I expound my condensed version; ‘its a profile of autism, where there is an anxiety driven need to be in control. Of everything.’ I’m often met with blank looks, sympathetic cocked heads, assurances of how difficult it must be or silence whereby the person asking is looking at me but their face clearly indicates they have their own (sceptical) opinion of what I’m explaining.

To be fair it is impossible to explain PDA briefly. It is all encompassing and vast.

As a condition, its inception only came to being in my lifetime, with Elizabeth Newson’s early research work in the 1980’s.

Today, most people have heard of Autism. A lot of work has gone on in recent years by charities like The National Autistic Society, with public campaigns such as ‘Too Much Information.’ In conjunction, changes in legislation such as the landmark ‘Autism Act’ in 2009 have helped boost its profile. Previously, it was a very hidden ‘behind closed doors’ condition despite being first written about by Leo Kanner and Hans Asperger in the 1940s – although as one of my favourite memes says Mount Everest was only discovered in 1852 but it was ‘highly likely’ that it existed before that date.

PDA is already 40 years behind Autism in the the public consciousness and its acceptance and understanding and is only recently gaining momentum. This is why PDA bloggers are working so tirelessly to get the word out there.

In a nutshell PDA is anxiety manifested in its purest form. A purple-ish white throm of brain activity.

Anxiety over the unknown. Anxiety over the possibles. Anxiety over the known’s.

Its like extreme Autism with bits of classic autism, bits of Aspergers’ autism and bits of anxiety, fear and depression all thrown in.

Its a pretty wild ride.

The way I have come to think of it is that if you have PDA your fight, flight and freeze response has mutated to Marvel proportions, think ‘Anxietyman/woman/boy/girl’ and everything and I mean EVERYTHING is a potential trigger. Drinking. Urinating. Socialising.

Just Being.

That’s not to say everything is bad.

Far from it.

Some things are exciting and overwhelming and interesting. Its just processing and anticipating these things takes effort and nerve. And you need epic reserves for this.

So many parents talk of their ‘light bulb’ moment. Coming across PDA and all the pieces seemed to fit. I did indeed have my own I just didn’t realise it at the time!

My place of work had a very well run Equality and Diversity department and one of the ladies in the department arranged training and awareness seminars on lots of topics from LGBT to Retirement options to Disability. The truth is that the department often sent emails inviting staff to attend workshops or the like and usually I would give it a cursory glance and then delete. However, after I had my daughter and I was struggling, these sort of emails spoke to me a bit louder and one such email invited staff with children diagnosed or potentially struggling with Special Educational Needs to attend a training day with a lottery funded charity called ‘Families in Focus’.

I turned that email around in under a minute.

The session fell on one of my non working days but so hungry was I for potential help I managed to persuade a babysitter and got to the session 15 minutes early, gratuitous takeaway latte in hand. I didn’t have a diagnosis at this point but I’m so glad that I made the effort that day as Families in Focus came to represent a huge part of my personal journey. At the session one lady spoke at length about her daughter who was on her third or fourth exclusion at her second school and I remember thinking ‘wow’ that sounds awful. She was struggling to get into work and balance her daughters needs with her own but the most intriguing thing was that her descriptions of her daughter sounded so familiar. When we had a short break and she had heard me speak she asked if I had heard of PDA as what I had said sounded similar to her experiences. I hadn’t. But along with all my other notes I remember writing PDA down and circling it for further investigation.

I have been on lots of different courses, workshops and conferences in recent years and even without mentioning PDA lots of professionals have remarked ‘have you heard of PDA?’ when I discuss my experiences!

Over the years I have got a diagnosis and as our county doesn’t diagnose PDA it is expressed as ‘significant demand avoidance traits’ I wasn’t savvy enough in the ADOS to even realise the gravitas of having those words on our assessment and have learnt how important they are since.  This wording helps to signpost caregivers and professionals to the correct PDA strategies when a county council doesn’t recognise PDA specifically.

The thing is PDA is tricky to diagnose. Not many county councils are allowed to diagnose it. This stems from the fact that it isn’t actually written into the current diagnostic framework, the DSM5. Doctors tend to like to do things by the book. Its fair to say that’s probably the right motivation to have. However if you bare in mind that Autism didn’t feature until the 1980’s in the DSM3, after originally entering into the DSM2 in 1952 incorrectly as a childhood form of schizophrenia it puts an interesting spin on things. Mount Everest anyone?

And the other thing? If you have a diagnosis of PDA or are raising a child with PDA then in order to make things better you basically have to throw away the rule book of everything that has ever gone before and adapt to a new unconventional way of life. The PDA way. Just a small change then!

So PDA is hardcore, difficult to diagnose and not really in the public’s consciousness. It doesn’t have much going for it does it?!

So that’s why days like May 15th matter.

Everyone with any connection to PDA needs to talk about it, get it out there and educate. Anyone who has had PDA touch their lives needs access to more support, more awareness and more understanding. If people don’t know that it exists then they could be struggling through trying to do the best they can or being told the wrong information. Knowledge is power and knowledge allows fellow PDA families to meet up in person or online and share some of the burden and strategies.

I just want to finish this piece on a high.

PDA is challenging and infuriating and the most difficult crazy way to live BUT it has some positives going for it too.

Momentum is changing – PDA parents are talking about it, Schools are coming up against children who have been diagnosed and are having to adapt and cases although horrific, like the treatment of PDA children and adults in ATUs are helping to highlight the condition and change procedures and policy.

The connection you make with fellow PDA parents/sufferers will be one of the strongest bonds you will ever have.

You will flip every narrative on its head. And that’s pretty liberating sometimes, right?

Life will never be dull.

You will appreciate the little things in ways you never dreamed of pre PDA.

You will be well rehearsed to help future PDA children and adults should you have the energy left?!

PDA kids are single-handedly helping to make the world a more creative, interesting and accepting place. Everyone else just needs to catch up!

Thank you for reading!

For anyone wishing to find out more about PDA and the amazing Hertfordshire based charity ‘Families in Focus’ please visit the following websites;

http://www.pdasociety.org.uk

http://www.pdaresource.com

http://www.familiesinfocus.co.uk

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.

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.

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.

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.

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’.

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.

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.