The icing on his cake…

Tomorrow marks an ending and opens a great big door to the ‘new’. Our PDA’er finally gets to say a goodbye.


You are most likely stopping by to catch up on the latest from the mummagrizzlybear household. There’s certainly lots of fantastic things to report and some of these are huge milestones on our #PDA journey for Babybear.

I’ve blogged a lot about our fight to source the right education provision for our son (square shaped peg) since he was excluded back in Nov 2016 from mainstream (round shaped hole). I shared with you my internal struggle over wanting to tackle the witch of a Head teacher through the legal system over neglect and discrimination but also knowing my energy was instead needed in focusing on supporting my boy to recover and grow. To let that go (and by *that* I mean so so so much more) I had to believe that Karma would one day play its part.

A couple of weeks ago we received fantabulous news. An email arrived late into the evening that brought tears streaming down my face. Happy tears. Our Local Authority had finally agreed the all important budget for our ‘dream’ school for Babybear. The very school I’d been told he’d never get a place at. The school that had relighted my hope and aspirations for him, that costs the earth but promises to deliver the moon and the stars in return. The school who has a head teacher that cares so passionately about individual children that you can see it and feel it. He instills belief and trust but he was forthright with his recommendations “those who fight the loudest will get the spaces”… So I fought… loud. Not only does Babybear now have a place agreed, he can start pronto. Tomorrow will be his last day at his temporary provision. A group of settings we were told he could only stay at for two terms but has now been there 13 months. A place that petrified me on first visiting. Its been a bitter sweet experience with highs and lows. He has learnt so much, some of which I wish we could have bypassed, like some of the choice new vocabulary when in fight or flight mode! But my oh my has he grown. I get choked up on my ‘what a difference a year makes’ type talk now… I’d never have believed this kind of change was possible. I like so many parents with challenging children had resigned myself to the fact that it would never get better; their symptoms and diagnosis will not simply disappear so why would anyone imagine life could become easier? However, here we are, about to bid farewell to a chapter I will now hold forever dear and we are eager and excited for the future and any hurdles that might come with the onward journey. We feel infallible. I asked Babybear tonight what he feels his biggest achievement has been since he’s been at the temporary school? “I’m not as angry anymore” was his reply.

Including his initial exclusion he has transitioned from 3 schools already, all without the opportunity for a planned farewell or the space to experience an ‘ending’ positively. This fourth transition potentially sees him joining a ‘forever school’, somewhere he can stay until he is 16, providing the setting remains right for him. He’s joining a class of 3 pupils, 2 Teachers and 2 T.A’s in a combined primary and secondary school, where he will be the 36th pupil in total. Class sizes will never exceed 8 pupils, and the school, although expanding will only ever admit a maximum of 45. The school day in length is far closer to a typical mainstream education but their approach to teaching is far more adventurous. Babybear will be able to work towards achieving as many qualifications as he is able whilst combining this with daily outdoor excursions, from horse riding to kayaking with the added bonus of a therapeutic team on sight continually assessing his needs and responding appropriately. They even have 2 school dogs on site which was quite an incentive to our little animal lover. This transition is mega and Babybear is currently in a really strong and positive frame of mind. It requires cakes and gifts along with careful management. Too ‘much’ and we could blow this. If its ‘not right’ he could fold.

This is the joy of Jekyll and Hyde life with a PDA’er. When you think you’ve got something nailed, you’re about to wobble. The things you think they’ll breeze through, they collapse at and the tasks you consider impossible they trump at. Life is constantly in a fragile delicate balance. In the grizzlybear household we no longer walk on egg shells but I’d be fibbing if I were to try and say my own anxiety about this big change was not causing me to ever so slightly panda to some things. Take the ‘cake’ for instance. He NEEDS a Pokemon iced cake to take to school tomorrow for the departing treats. Mummagrizzlybear dutifully presents ‘the cake’ ( the very one he’d described from the supermarket – just picture my relief when just 1 remained on the shelf for me today!) only to be greeted with “does it have jam in it?” Yes the cake has jam….. Queue the meltdown…he wanted chocolate. On no other occasion do I relent on ‘food related meltdowns’ in such a way, but today I hot footed it back to a shop to buy his very own chocolate cake to accompany the Pokemon cake which couldn’t be returned because of course he still NEEDED Pokemon cake!

I wish I could add to this post some step by step tips for a fail proof way to get other children the provision they deserve. Sadly, I don’t think I could do this list justice right at this time nor explain clearly enough exactly the things we have needed to do to reach this point…needless to say this is a task I am preparing myself to work on for the future…the nearish future where mummagrizzlybear will find herself contently poised at the writing desk safe in the knowledge that both of her boys are safe and well looked after at school, having their needs met and thriving. Oh doesn’t that sound sweet!! And…that writing desk…it will be in the new house! Because in amongst all of this fab Babybear-great news, Daddybear had some top news too with a promotion that comes with a house right in the countryside to boot too! Brave and freshly full of excitement for our future, this grizzlybear family feels it can overcome anything, so what’s another little house move! Bring it on!

And lastly…you know that ‘Karma’ that I trusted my resentment and grief over to. Well, a certain person who once reigned with vicious authority and caused the grizzlybears untold pain can no longer taunt the mainstream population that remained trapped in that ‘outstanding’ setting as it would seem she chose to resign ahead of the news being released of corruption regarding the last academic years exams!

Bitterness and resentment will get us nowhere. I was told this once. I chose to channel every bit of pain into optimism trusting that everything happens for a reason. This opened us to opportunities and from each and every new challenge we have grown. Tomorrow marks an ending and opens a great big door to the ‘new’. Our PDA’er finally gets to say a goodbye.

I am a right old mixture of emotions right now, absolutely 100% likely to cry tomorrow at his farewell but I am also still a very aware and in touch with reality PDA Parent. I totally get that tomorrow could be a big anti climax. I am more than aware that the school transition could quite seriously set Babybear back a few hundred steps to begin with. And if the school move doesn’t the house move sure will. However. I’ve learnt to appreciate and enjoy the good bits whilst they’re there. Roll with it. Look back on the journey and see the things we’ve overcome thus far. Remember this next time we hit a blip. Breathe. Deeper. Smile. Life can be good if we choose it to be.

The power of ‘deep breaths’

I met a lady this week who scoffed the advice, of taking deep breaths and doing something ‘nice’. Right at this time she just couldn’t see, just how empowering self-care can turn out to be.

I saw the tiredness in your eyes, the tears you hold back and are trying to hide. I see you struggling and at your wits end, I know the pain and the strife my friend.

We are told a ‘label’ will not change a thing, we will still have the challenges our child brings. Professionals grind you down and destroy self esteem, ignoring our plight is not supportive, it’s mean.

Whilst you wait in a queue of an extensive list, keep track of the things some professionals miss. Prepare for your meetings assertively, watch out for those trying to dodge accountability.

Find out your rights and strive for what’s best, i’m afraid at this stage you just cannot rest. This however means that you must work hard, taking care of yourself will be your trump card.

I met a lady this week who scoffed the advice, of taking deep breaths and doing something ‘nice’. Right at this time she just couldn’t see, just how empowering self-care can turn out to be.

Dealing with challenging kiddos is rough, and many a moment you’ll feel ‘that’s enough!’ Learning to work on your own stress and anxiety, prepares a stronger character for the next day, someone with resolve and flexibility.

Getting your sleep, developing your strength, helps us all to increase our resilience. A glass of Gin or making the time for a bath on our own, are some self-care tasks that I’m proud to own.

Recognising our responsibility, to take care of oneself is not selfish you see. Improving your mental health and focusing on well-being, reduces the risks and can give parenting new meaning.

Understanding that ‘change’ will start with YOU, each day a fresh start to try out something new. List out your goals and then like at a gym, work out how to achieve them and let support in.

Reach out to people who comprehend, where you are now and the things you want to end. Keep your circle small, trusting those who share in your plight, you’ll need encouragement and positivity if you are to win this fight.

Each day task yourself with a ‘positive’ to find, something you love or achieved or deed you saw that was kind. Open your awareness to the joys of a day, a blue sky, a fresh breeze or something good coming your way.

Reject pessimism, the ‘doom’ and doubts, take charge of your thoughts, push the gloom out. Remind yourself just how much you’ve already survived, picture your goal up ahead and then onwards you strive.

Taking deep breaths sounds too simple to you, when I heard this I thought “if only you knew”. Our world was so different just 12 months ago, but ‘defeated’ didn’t help and this I now know.

Empowered and confident that I do know best, brought changes unimaginable into our nest. Learning to breathe and take time for myself to heal, gave me back my hope, aspirations and opened doors to the things I wanted to ‘feel’.

You too can combat the rut that you’re in, just recognise first that you are prepared to ‘win’. Baby steps first, make small changes first, if you trip or fall, get up and plod on and not wallow in hurt.

So much of this ‘battle’ starts in our heads, as we end each day recounting failures and tomorrow’s dreads. Reprogramming our brains is power and key, to change things, we first must choose to! Trust me.

What have we learnt in a year? Our PDA story

I now recognise that ‘everything can change if you first choose to’. In our world, a year really has changed everything.

This post comes to you as a contribution to ‘Steph’s two girls’ series on her blog ‘This is our PDA story’. The PDA society are once again backing her plight to further raise awareness of Pathological Demand Avoidance by encouraging families to share their stories via her blog series, you can find out more here

Steph’s blog has been one of a small selection of fellow parent-carer warriors I have connected with and been positively influenced by since I have started blogging.

I’m going to start this blog painting you a picture. Its a dark, cold January night and a friend suggests we take the kids and dogs on an evening stroll around the village (part of our ‘we’re gonna be fit for the summer regime’). This is not part of any normal routine for my children, who are quite used to ‘gaming’, watching TV and reading before bed most nights. One is now 10 (known here as Biggerbruv) and an xbox addict, he is in year 6 and couldn’t think of much that would be ‘uncooler’ than being seen out with his mum. The other is now 8 (Our ‘babybear’ also referred to as my PDA’er). He likes his evenings to go ‘just-so’. He has PDA (Pathological Demand Avoidance) alongside some exciting ‘keep mum on her toes’  personality characteristics! Mum, being boss, can make decisions about what the family are going to be doing tonight, so with minimal coaxing and planning, everybody is wrapped up warm and the dogs are on the leads. There were minor objections from the PDA’er but humour and distractions helped. On arriving back, those cherubs who often bicker and fight sat together to read to each other on the sofa before snuggling in for some TV and then briskly heading off to do their teeth and jumping into bed. They slept through and in the morning got themselves dressed and organised before departing for school all without one single fall-out or ill word. This my friends is what we call a one-off and not a typical picture of  a night in the life with PDA. But a pleasant one none the less!

12 months ago, we received a formal diagnosis for our son from the Local Authority Autism Spectrum Disorder Team. We’d known about PDA for approximately 4 years prior to this so although the diagnosis was more confirmation than a shock, it still hit us like a bus. I attribute some of the ‘grief’ I experienced to the traumatic previous 4 years of encountering un-supportive and critical finger pointing professionals who wore down any essence of confidence or self-esteem that I had as a parent. To gain a little insight into our post diagnosis grief, read my earlier blog on this here…Grieving and functioning … post diagnosis 

PDA to our household a year ago looked nothing like the picture above and i’ve just ‘avoided’ writing about this by distracting myself with facebook, because to be quite frank, this is painful to reflect upon. Last year, my 7 year old son was critically vulnerable. He’d been excluded from his mainstream school for ‘periods of prolonged challenging behaviour’  and had endured an awfully (mis)organised ‘managed move’ to an alternative smaller mainstream for a whole 3 hours before absconding and being returned by the police. He was scared, scared of everything and anything, anxious beyond description.  He did not have a healthy sleep pattern, he self harmed, he had obsessive and limiting food obsessions, he regularly lashed out, he was reclusive, he was destructive, he had frequent night terrors when he did sleep, he was defiant and avoidant by day and distressed by night and saddest of all he’d lost the light behind his eyes; that glimmer of ‘shiny sparkle’ I’d once known as a toddler, had gone. As parents we were at our wits end. We’d survived years of ‘challenging behaviour’ prior to this but we would have gone back to those days in a heart beat. At our worst (and probably my most painful memory) we were a desperate family quite literally clinging on to a little boys life as he attempted to throw himself out of an upstairs window and then when successfully rescued ran to the kitchen and pulled a knife on himself with tears streaming down his face telling me and his brother how he ‘just wanted to die’. I can’t recall the source of this meltdown. Back then I hadn’t really learnt to see past the challenging behaviours and this was a period of our lives that whizzed by in a blur and were tinged with heartache. It changed ALL of us. It quite nearly broke us in many ways.

I became Mummagrizzlybear. A parent-carer new to the world of parenting a child with a ‘label’. Prior to this I’d been the one labelled, from neurotic mother through to the anxious mother. The birth of mummagrizzlybear gave me a new platform to ensure I took care of myself and a way of documenting our journey. I found writing to be therapeutic and in many ways found myself able to intertwine my work head and reach out and help others along the way. I made a conscious decision to attempt to maintain my children’s privacy and dignity by keeping my blog anonymous. This has had some pitfuls in terms of being able to spread awareness and also in being able to connect with other families who may will prefer a ‘real’ face and name to interact with but on the most part I feel I have made the right choice for my family right now.

You can follow our world and #virtualvillage of a support network here on facebook or just keep an eye on my blog updates here on wordpress

The ‘usual’ types of everyday PDA challenges that you will read about on sites like the National Autism Society, here and they can be used as a helpful summary and go a long way to help families and some willing professionals to comprehend that the underlying root of all PDA behaviours is an anxiety-based need to be in control. What these sites and information guidelines do not explicitly get across is to the extent that this can play out and I also feel they too often miss the opportunity to explain the impact that the excessive anxiety can have on other things like self esteem, mental health and ability to interact with the world in general.

The tables started to turn in our household with 2 key events occurring virtually simultaneously. Firstly, Babybear post diagnosis was seen by CAMHs as a matter of urgency and the Psychiatrist prescribed medication to alleviate some of the symptoms. Secondly, we entered the world of ‘alternative’ education provisions. As parents we had to shift our ‘expectations’ and throw out the typical ‘rule book’ spouting out parenting strategies. We needed to prioritise ‘well being’, ‘happiness’ and ‘mental health’ for all of us in the grizzlybear household over and above the practical things like education, finances and employment. We learnt to measure ourselves differently and became more open to viewing the world through the eyes of our PDA’er. A successful positive day became a ‘calm’, low on demands kind of day. One where we could be tucked into bed unscathed at the end of it. One where nobody had been excluded during that day. One where no one had been injured or property destroyed. For many months our focus was completely on getting our babybear re-settled and in fairness this became a far easier task once we stopped trying to squeeze our square-shaped peg into the round holes of a mainstream education. The transformation from chaotic, misunderstood and destructive family life to a calmer, respectful and compassionate world was by no means overnight and had us riddled with guilt and heart ache as we felt we neglected Biggerbruv whilst tending to mountains of meetings and appointments all with the limelight on the youngest. You can read about my thoughts on Biggerbruv’s justified resentment here (although it’s just made me cry re-reading it!):  PDA Sibling resentment

During these months of adjustment, we like many parents in our boat attended courses on ASD and a particular favourite of mine a Sleep workshop bringing about one of the more significant changes in our house in helping Babybear to sleep alone, in his own bed, through the night! (When you get a chance check out my posts on the Sleep stand off or PDA and sleepboxes, if you too are a family having a night time sleep crisis). We also had many moments of feeling like we couldn’t go on or wanting to quite literally run away. It was not easy. Mummagrizzlybear read heaps. Anything that could offer glimmers of hope and ideas we had not yet exhausted. My favourites being ‘The Explosive Child’ by Dr Greene for introducing me to the idea of ‘lagging skills’ and ‘Can I tell you about pathological Demand Avoidance Syndrome?’ by Ruth Fidler which was a great book to share with my sons (as its written from the perspective of a child with PDA) so that they came to recognise that other people have PDA too. We also had varying professionals come in and out of our lives ranging from a Family worker, a Behaviour specialist, an Educational Psychologist, a Psychiatrist, a mental health worker, A SCIP worker (supporting families with complex disabilities), Disability team social worker, an Autism specialist and the alternative provisions’ SENCo and teachers to name but a few. On each new meeting we had to share our ‘story’ from the beginning with each new member of the team. Whilst the support was invaluable in many ways it was infuriating in others and we also faced soul destroying responses from those we assumed ‘would help’ but instead said things like, “You’ve done everything we’d suggest, there’s nothing more we can offer” or “I’m sorry but you do not meet the threshold for that support” etc. We’ve overcome obstacles and hurdles and we have fought for what we know is right for our PDA’er. We are so close to getting our son a place at our dream school for him. We are so so close. I can’t quite describe my excitement for him! We have defeated so many demons that we are a family embarking on new adventures in the months to follow, and a year ago we simply COULD NOT have done this and nobody could have convinced me otherwise.

Reflecting back over the things we have gained in a year has me feeling quite proud of our little grizzlybear family. Much of the things we have learnt have benefited both our PDA’er and his Biggerbruv (our virtually neurotypical pre-teen!) We have become calmer, less anxious parents who are more self assured and aware of our resilience. Mummagrizzlybear’s blog posts kind of archive our achievements really but here’s a little summary of our highlights:

  • Overall reduction of meltdowns both in terms of frequency and intensity. We have all developed a far better understanding of the triggers and the required coping strategies. Over time we have helped babybear to learn how to communicate better about how he is feeling and what he needs. This also progressed into him being able to reflect over incidents and help us to understand what might have helped or what we could all do differently next time. We have action plans for certain known triggers and make a huge use of humour. A bit of reverse psychology often helps but overall the key thing to reducing meltdowns has been about learning to modify the environment to reduce his anxiety and ultimately to minimise direct challenging demands and help him to feel more in control.
  • We conquered SLEEP! We all now sleep in our own beds once more. We recognised that  only we could change the unhealthy rituals and patterns babybear had become reliant on and we took control.
  • As a family we developed the united front and focussed our energy on feeling like a team. Our social circle became small but we became less frantic and more attentive to each other. I think we have moved into a phase of acceptance and we now embrace not being ‘ordinary’. We no longer make apologies for the quirky things we need to do in order to function happily. We stopped seeking approval or denying that we needed to make accommodations in order for us all to thrive as a family. As parents we have come to identify that all behaviours have a function (equally valuable to remember this with a pre-teen as well as with a child with PDA!) and we see it as our job as superhero detectives to fathom out what any given behaviours are attempting to communicate so that we can collaboratively develop a strategy to overcome it. We involve our children in problem solving and make sure that they understand that we are human too and learning as we grow.
  • My work role (although very sadly became compromised by the overload of work involved in fighting for the right education for my son) taught me a lot which I have been able to transfer to our home life. Most importantly our way of combating negativity and seeing the glass as refillable. We know that we encounter hiccups and ‘life blips’ but these are all great opportunities to learn something. If we keep encountering the same kind of life blip, then it is my belief that there is a lesson in there somewhere that has not yet been learnt!
  • Another bonus from the support work I have been so passionate about is that you had to practice what you preach. In my case this was heaps of self care along with holding up a mirror to see just what I am accountable for and responsible for. I am accountable and responsible for my happiness, my behaviour and my sense of worth (as well as many other things). We share this with our children because no matter what the circumstances (even for children with a diagnosis that labels them as challenging) even children must come to recognise the power they have and that we are all responsible for our actions. It voids us of the ‘I can’t help it’ type excuses and makes us look at how we interact and communicate with each other as well as how we feel about ourselves.
  • We now have a very comprehensive and very specific EHCP (nearly finalised) despite being told a year ago that my son would not meet the ‘criteria’ for a plan. We have beyond doubt evidenced that the mainstream school he was at, very severely let him and us down and because of this, our local authority has been quite responsive to more recent threats to take them to court to ensure that my son receives the very best education available to him. My opinion about the alternative provisions that I so desperately tried to avoid a year ago has completely changed and I now recognise that ‘everything can change if you first choose to’. In our world, a year really has changed everything.

PDA and ‘Sleep boxes’

Some recommendations for night time anxiety that might be worth a try if sleep feels like a distant memory!
Even with meds we had not achieved at night what was necessary for us to all healthily function the next day.

Attending a scope ‘sleep workshop’ was not the highest thing on a list of priorities for mummagrizzlybear but having begged for support and having exhausted all ideas I’d been able to graple hold of, I was faced with the workshop prospect. Daddybear exempt himself from this joy and so the delight was all mine. Sarcasm got me so far. My work-head told me to tune in and be as open minded as possible. Sure, I’d ask my clients to be open to the possibility of learning new things, so a dose of my own medicine was required. 

My doubts included the fact that, 

a)  I am an intelligent, competent mother who understands the value of a ‘night time routine’, so what could a workshop hope to teach me?

b) Nothing ‘text book’ had so far been successful for my PDA son and I did not have the strength or energy (through lack of sleep!) to sit through hours of explaining to professionals the complexities of my child 

However, we were beyond sleep deprived and I’d kind of already dismissed the advice of the autism support team about creating a sleep tool box, foolishly believing they had misjudged my son for someone who might be compliant and up for trying these things! So with little options left I took myself along to the workshop. At his worst babybear was fighting going to sleep until about 11pm and then waking hourly screaming and extremely distressed until finally ‘getting up’ for the day anytime from 4am.

The first thing I recall that sticks with me is just how tired we all looked. The reality of meeting other intelligent competent parents also failing in the ‘getting your child to sleep department’ and immediately I felt more relaxed, and a little less of a failure. We yawned our way through pleasantries and fuelled ourselves on coffee and most in the room couldn’t afford to stay for the full session as we all had children with complex needs and various other appointments/meetings and duties to attend to each and every waking moment!

The next thing that stuck was that night waking was ‘normal’. We learnt about a neurotypical persons sleep cycle and it was at this point I could see how close to waking each of us are every night on many occasions. We learnt more about the stages of sleep  and I acknowledged that I had misunderstood the stage of sleep where we dream, falsely believing this to be when we were in deep sleep. The sleep cycle offered me some insight into the times of night that my son was waking and from here I could see that the issue was less about the ‘waking’ and more about the inability to resettle himself and self soothe. On reflection he struggled to self soothe as a baby.

Routines were something I understood the importance of. I had a son on the Autism spectrum so we were familiar with routines. So much so that I often rebelled against them, resenting the rigidity it sometimes felt that we lived by. Nevertheless the night time routine was predictable and familiar and in much the same way so was the unhelpful coping strategies we had developed. You see, I’d learnt that he would not self soothe and settle off to sleep each night so I had a routine method for handling this. I was aware that it wasn’t helping him learn a better way of coping but it felt like the only option and the only way 4 members of a household would achieve some rest. Just as one could be advised to implement a new routine or a change to an already established routine, we were able to reflect over the changes that were necessary so that our son could become more independent and settled at night. And just like most parenting blunders, the biggest change was going to start with us and our behavior.

I also learnt about sleep diaries and was given a format to use. I’d kept diaries for weeks at a time previously. In fact I smirk whenever I open an old notebook as I find over the years I’ve kept many such a diary….turns out this little issue we were dealing with was history repeating itself time and time again. He’d regularly struggled to sleep and then had periods where he mastered it before swiftly returning to being the devil child who would not rest! But my sleep diaries did not offer a ‘pattern’ or an issue that could be pin pointed. More often than not they just diarised my despair! Along with sleep diary advice we were taught about the hours of sleep required by each age group and how this differed for children like my son on the spectrum. In addition we received guidance about how long it should take anyone to get off to sleep after a night time routine… 15 minutes!? (Allow 30 mins for children with additional needs) Even my biggest lad could piss about for up to an hour after ‘lights out’ and the advice from scope was that I was putting him to bed too early! I learnt the things to record about our night time battles so that we could begin to implement changes.

Over the years, I’d been given countless books on sleep success strategies, i’d tried every ‘trick’ in the book and at this point we were fortunately through the door with CAMHS and receiving a Psychiatrists support, guidance and prescription power. Our own GP had suggested Phenergan and other antihistamine alternatives leading up to this point, but nothing had improved the predicament. Along with the Risperidone (antipsychotic meds to alleviate some of the anger outbursts) babybear had been prescribed a form of melatonin (circadin) to assist the body in its natural sleep inducing chemicals. Mummagrizzlybear had hoped this would be the miracle cure. Both meds offered some benefits, both assisting with him being in a ‘calmer’ state at bedtime and on the lucky occasions they’d help him to pass out around the socially acceptable hour for a lad of his age. However, as others had warned me, melatonin can have a reduced effect after about 3 – 4 hours, and babybear (despite getting off to sleep) continued to have night wakings. He might get off to sleep between 8 or 9pm with the medication, so you could pretty much set your watch by his first stirring somewhere around 11pm and once the waking had started it was at least every 2 hours and finished off with an early rising somewhere between 5 and 6am. Even with meds we had not achieved at night what was necessary for us to all healthily function the next day.

So I returned from the workshop armed with knowledge and a determination to resolve this. However diarising our problems and making alterations to the routine by changing bedtimes and removing the unhelpful coping strategies would not be sufficient in my book; my PDA’er needs a more hands-on, in control type of motivation. I knew I had to introduce better ways to manage and role model the new expectations. Fortunately babybear has his very literal way of interpreting language. I can say “we must not scream in the middle of the night” and he can process this; but to act upon it I have to also give him an alternative solution. “At night if you wake you can … ” and there was my opening to introduce the idea of the sleep box.

Every child will respond differently to new ideas. Trust that you know your child best. For families living with PDA find the tactic that works today. On this occassion I used the tact of collaboration, humour and mild nonchalance. I introduced the idea that I’d ‘been on this course and had some suggestions about how we could all sleep better and that I’d also been shown how to make a sleep toolbox (slight white lie) but it was really only something I could do with his help, and it might ‘suck’, but hey we wouldn’t know how rubbish an idea it might be unless we gave it a go’. I then retreated and looked too busy to complete this task whilst also cleverly stumbling across a box we could have used if we were going to be bothered to make such a toolbox. It worked. Babybear was interested. “So what can we put in the box?” He asks. Again knowing his likely response if I became too eager I casually name dropped the sorts of things I’d put in if I were making one. Rule of thumb is that the contents should be anything you are willing to allow them to do during the middle of the night that might assist them in maintaining or returning to a calm state. Most of the items were mutually selected and we talked about the reason they might be helpful and examples of what we could do with each item. I’d already decided that iPads and noisy items were going to be a no-no. He’d fully play that sleep box to his advantage otherwise and I’d already worked hard to ensure technology had been removed at least an hour prior to the night time routine to minimize the ‘screen effect’ impacting on the sleep issues!

Into his box went the following:

  • A torch (he has a lamp in his bed already but a torch added a sense of security)
  • Mummagrizzlybears teddy (my most sacred childhood possession to demonstrate a giving of myself)
  • A clock (so he can satisfy his obsession about ‘time’, without needing to scream out ‘can I get up yet’)
  • His ‘worry monster’ (a teddy he can post notes into to help him shift on his worries – he has only ever ‘used’ it once and I forgot to empty out the worry but nevertheless he wanted it in there)
  • 3 of his most precious collectible items (his narnia figures with the agreement they could be played with quietly should he wake)
  • A photo album of him as a baby (looking at himself can occupy him for hours)
  • A picture of mum, dad and brother (in an effort to replace our physical presence)
  • His stretchy body sock (a sensory tool that makes him feel safe and secure)
  • A note pad and pencil (for writing down anything he needs to tell me or to put a worry in his worry monster)
  • A reading book (with the agreement he can have his lamp on to read if he wakes)
  • An aromatherapy sleep spray

I suggested we could decorate the box but for baby bear that was a step too far and he almost gave the box the big heave-ho having noticed that he’d unwittingly conformed! We moved on and made little of the box until bedtime when I got baby bear to tell daddybear all about it. Sounding in charge, he took to it like a dream and placed his box of goodies on the end of his bed. The routine changes needed some gradual delicacy. 

Daddybear and I had taken to lying with babybear each night after his meds and storytime until he eventually fell asleep. We had to alter this and the adjustment took some time. We began by NOT getting into bed with him. Instead we placed a chair in the room to read stories from. We then began by retreating from the room agreeing to check in on him in 10 mins. Some nights I took my shower after his story time just so he could hear me upstairs with him. We stuck to the plan and checked in on him, each time we found him to be awake we gently reminded him about his box and what he was allowed to do should he wake in the night. We also reiterated what we would like him not to do. The demand avoidance may well be accountable for his reluctance to actually use the box but interestingly he would not agree to moving the box from his bed to a shelf… It had to stay put!

The same night we introduced the box I also started using the new sleep diary format. After the first week what it showed was that his actual ‘sleeping hours’ were within the normal range for a child of his age. This was news. I’d convinced myself he just didn’t sleep! I was so tired and focused on the ‘waking’ I’d forgotten to log his actual sleeping periods. In that first week he’d woken in the night and instead of screaming the house down, he’d tiptoed in to wake me. In shock, I almost caved and cuddled him in to my bed but instead I returned him calmly to his bed and provided him with items from his box. On these wakings, it required us to repeat the “I’ll check on you in 10 mins” routine which was hard to endure but worth it. Seeing it through confirmed we were trustworthy and also reliable with the boundaries. All of this I believe has helped to reduce his night time anxiety. What we were doing before was unintentionally fuelling his fears by only confirming that he felt safe when he had us with him.

For 4 weeks I kept the diaries. We did not give in. We stuck to the plan. Each morning I was reassured that even if there had been night wakings he’d still achieved a ‘healthy’ amount of sleep. Each day we reinforced just how pleased we were and baby bear learnt to feel pride for achieving the goal of ‘quietly staying in his bed’. We had successfully shifted the focus from ‘going to sleep’ or ‘not screaming’ to something more positive and plausible. 

We had always believed that a dependent use of sleep meds could be counter productive in the long run and once life had become a tad calmer and everyone was getting more rest, we began to reduce the regularity of the melatonin. We choose to communicate very honestly with our son about meds and explained it to him that if he took them every night there was a chance that they could become ineffective. So on nights when it wasn’t essential that he got off to sleep, like on weekends we could try and go without. Then over time we tried every other week night and before we knew it, he was managing without on more nights than he needed it. On rare occassions where he was particularly distressed at bedtime he would be offered it. Its been well over a month now since he has used melatonin at night

I’m not certain which came first. The chicken or the egg? Did the sleep box reduce his anxiety or was it the changes to the routine that improved his confidence and ability to self soothe. Like any new skill or sport, to become efficient, one must practice practice practice. We too had to rehearse the more helpful strategies to become more familiar with them. Collaboratively we have introduced a new approach to the challenge of sleep and in doing so we have strengthened our resilience, improved our well being and developed a sense of reassurance and hope. Change can happen at any time. We can choose it to be so. You must first decide that you are willing to change and committed to it. 

PDA Sibling resentment

He’s my neurotypical kiddy and with this comes some unnecessary added pressure. I want so much for him. I expect so much from him. But I am so so thankful for him

My eldest son and bigger bruv to PDA’er is an amazing boy. He’s often only referred to in my blog when I am referencing an issue I am working on with littlest babybear and it is this that I have been reflecting over for some weeks now. Firstly let me point out that, it is not that I have overlooked him altogether and by no means have I not been attending to his needs as a little lad but I have come to recognise that he has a tiny frame but has unwittingly become a young man. A young man who has through no choice of his own had to develop broad shoulders in the metaphorical sense as puberty has not yet allowed him to physically do so. He has in the past six months witnessed trauma and emotional breakdown of the people closest to him. He has been scared and vulnerable and at times alone with nobody available to attend to him and he’s felt responsibility that he shouldn’t have. He’s been let down. 

I am not writing this blog to berate myself nor encourage others to do so, I am merely acknowledging that whilst our PDA’er has struggled in recent months and I’ve been very aware of the impact this has had on us as his parents, I have not been in the optimum place to deal with the fact that this too has had an impact on bigger bruv.

He’s been a bigger bruv for 8 years. That part is not new. And much like other elder siblings, there are some parts of acquiring  a brother that didn’t sit well with him, such as having to share and learning to tolerate that another smaller being would now occupy a lot of mummagrizzlybear’s attention. It’s true too, that we have bundles of happy memories of brotherhood and being a family unit of four. Mostly we work. We are a good team. That said, he has encountered traumatic events that have changed him. They’d change anyone. As an adult needing to continue to function, I had to file those traumatic experiences and work through them at a safe time. I tended to bigger bruvs immediate reaction to the trauma with metaphorical plasters, to cover up the wounds, hoping that with time, he’d heal and through good old childhood resilience, he’d bounce back. He’d been amazing through so much so far, it hadn’t crossed my mind that he wouldn’t overcome this just as smoothly.

That’s the thing about my biggest baby bear, he’s always been smooth. As a newborn he was pretty text book and made becoming a parent a joy. He affectionately attached to me in his early years and much like boys do, he then looked up to his role model of daddybear.  He sailed through his preschool years and demonstrated his much loved sociability and obvious sense of self. He knows what he likes and developed a early sense of independence which I encouraged. In primary he found the value of his peers and I believe he is right on track in terms of his development. He’s driving me potty, pushing boundaries and becoming a pre-teen before my eyes. All normal stuff. But we have an added skeleton in the cupboard. I call it resentment. He terms it differently. He’s desperate to feel ‘normal’ and blames babybear for him not being so. He’s stuck on this diagnosis of his brothers and seems incapable at the moment of accepting it. He understands it. He gets it. If anything, he’s a ruddy expert on it, but in his eyes this makes him anything but normal. 

Resentment eats any of us up, much like any negative emotion carried for too long. It’s only function is to keep us low. I am not for one second disregarding where this resentment may have come from. Like I said, I know what he has seen and I accept that there is probably a whole load of stuff that I have missed in terms of what it has been like from his perspective. I don’t want to rake up the horrible stuff but to give this some context, bigger bruv has at times been physically assaulted by babybear, beyond the ordinary realms of sibling play fighting. He’s witnessed his parents be physically attacked. He’s watched as we’ve clutched hold of baby bear attempting to throw himself from upstairs windows in the middle of meltdowns. He’s physically intervened when a knife was being used as a weapon. He’s been the one to call for help when mummagrizzlybear has been hurt. He’s watched as his brother has been restrained and injured by staff in a school. He’s been the one sat in school wondering where it is that his brother has been sent. He gives in when he can see a meltdown about to ensue. He walks away when he wishes he could stay and argue.  He has had to learn to take care of himself because let’s face it, at times I just haven’t  been available to do it for him. Anyone would experience resentment right?

Take tuesday this week for instance. An unexpected meltdown was upon us prior to the school runs. Despite my best efforts I was sucked in and dealing with babybear who needed significant support to get out the door to his taxi for school. Flustered I turned my attention to my biggest babybear, who just like any 9 year old boy has a habit at the moment of not focusing on the things that need doing before school and instead being consumed by gaming or messaging a mate. But not Tuesday.  He’d sussed out what was needed. He had my back. He’d packed his lunch, he’d gathered his things, brushed his teeth and had his shoes on and was patiently awaiting his lift to school and as I walked back in the door delivered a very well timed gentle hug and dash of humour by summing up the morning with ‘well that was tricky for him wasn’t it mum’. What a bloody star. He’s learnt not just what has to be done on a practical level, but also how to offer appropriate emotional responses of support and all at the same time as learning to understand PDA, the triggers, the meltdowns and the best approaches to living with this condition. 

I’m quick to clamp down on him and feel like I’m always on his back. He’s my neurotypical kiddy and with this comes some unnecessary added pressure. I want so much for him. I expect so much from him. But I am so so thankful for him. I tell him often, but he rejects me, mostly, because it’s so uncool but also because he’s angry with me. He won’t say it in so many words but all behaviour is communicating something. He kicks off with me because in his eyes, I am the one who has let him down. I was the one too busy dealing with babybear. I was the one pushing him to one side, expecting him to know better, begging him to support me and make life easier. I am who he is angry with and I get it. He has his moments with daddybear but he still holds him in this light that says he must be some kind of god. He aspires to be like daddybear. Who wouldn’t? Daddybear gets to leave for work far more often than I do!

And so we have a resentful sibling. I’m not implying all siblings in similar situations will definitely feel the same, but it’s worth considering just what they put up with, above and beyond the role of ‘normal’ big bruv stuff. I’m guilty of complaining that he always has a habit of pushing babybears buttons. He knows his triggers and can be a right wind up. However I’m equally guilty of not intervening when babybear is behaving in a way that I know frustrates bigger bruv. Bigger bruv gets embarrassed. I’ve seen him pretend he is not with us when babybear is kicking off publicly. We have to carefully time opportunities where bigger bruv can have friends over and on one occasion a parent actually declined a sleep over invite for fear that her son would not be safe at our house and my eldest has to deal with this too. Forgiving his misdemeanours is easy when I can create a list as long as my arm about all the wonderful things he does, and mostly he does this for his bruv. Sure, sometimes it’s for an easy life or simply because there doesn’t seem like there is any other option but for that I shall always respect him for being an amazingly caring young man, whether he’s willing to acknowledge that he is a young-carer or not.

My amazing little trouper has finally been able to talk about the scary things that are stuck in his head (I suspect this will lead us to the route of his resentment). He’s engaging with support workers and opening up. He’s been referred for some specialist support to help him overcome some of the scary things that have gone on. At some stage I hope we will be offered support together to rebuild the trust and reinforce the love and gratitude I have for him. I work on this daily without support but like anything emotionally charged with our kids it’s not easy. I’m aware that it can become manipulative in the sense that as I feel guilt, I could let him walk all over me and get away with things by means of compensating. But I’m not like that. I’ll show my love and respect for him by my maintaining of boundaries and he will push and push to see if I’ll crack. I hate upsetting him. It’s hard to discipline a child that you know is acting out as a result of things I should have protected him from. But I focus on the man he might become. Right now I have an angry child who needs reassurance, love and to know where he stands. I can only hope that I can support him to once again feel safe and taken care of. He’s in a place right now, where he perceives this as over protectedness and strictness. Which makes me wonder how we will survive the teenage years! Haha. Bottom line is, I will not give up. I will get him the specialist support he might need just as I have for babybear. I’ve learnt a great deal about my capabilities as a mum over the recent months and I’ve re-evaluated  my priorities. Working less, I had said, was about being available to care for babybear but in actual fact it has also been about ensuring I am not so tired and strained and therefore having nothing left to give to biggest bruv! This has set me free from my feelings of resentment about having to give up some of my work.

Biggest bruv and I have more in common than I first realised. This gives me hope. I’m often told that I have an amazing appproach to parenting our little PDA’er but my eldest is amazing with him too. His fears and anxieties are similar to the things that run through my head. He once asked me “mum, will I have him forever?” And I recall sniggering to myself that it had crossed my mind that I too may have babybear with me far longer than a ‘normal’ parent anticipates when you start planning babies! I laugh too at the amount of times I refer to ‘normal’ families, much like the aspiration my eldest has…. to just be normal. If I have learnt to accept and adjust I believe others can too, including mr resentful. He will grow. All shit experiences provide a learning opportunity. I’ve learnt just how much harder I need to work on my eldest feeling safe so that he doesn’t ask us to pack him off to boarding school, again anytime soon! Any of us can implement change at anytime. We have found time to fit in much needed one to one time. We have written a safety plan of action. We will keep talking and learning and growing. 

I hope one day he will read this blog and know just how proud I am of the young man he has become. He is a comfort to babybear that I could never replace. He is funny and witty and amazingly brave. He’s outspoken but giving and a passionate friend. He’s loyal and loving and fiercely driven. He’s going to encounter his fair share of mischief as he just can’t help being involved but he’s already capable of such mature reflection that I’ve no doubt he will become one of life’s best ‘learn from the consequences’ candidates. He is a carer there’s no doubt about it. He’s forgiving and compassionate with a firey side reminding me he’ll always be a huge asset to our family team. I couldn’t love him more if I tried. Even when I’m mad!

Top tips if you find yourself with a resentful sibling, might include, 

  • making time for each other, each day, find even just ten minutes that is reserved just for them
  • keep talking, despite a disgruntled pre teen response, keeping at it, shows you are committed
  • respect what they might be finding difficult, it could be similar to the things you find just as tough 
  • Listen, even if it doesn’t make sense to you
  • Engage specialist support to help demonstrate that we can all reach out for support 
  • Empathise. As parents we didn’t choose to become carers but neither did the sibling.
  • Teach appropriate ways to express anger and frustration
  • Manintain healthy boundaries and model respectful behaviour
  • Recognise, reward and be thankful for the ‘good stuff’, the stuff that went well instead of giving focus to the bits that go wrong
  • Factor in respite for the siblings too. Time when they can see mates or family without their sibling
  • Reinforce positive relations as often as possible, hep them see why they love one another
  • Reflect over the ‘positives’ that having a sibling with a disability brings (fast track at theme parks!?)
  • Be open about how hard you experience things sometimes so as to help normalise the tricky feelings
  • Encourage diplomacy, no matter how hard things are nobody should be subjected to burden or blame
  • In the face of challenging behaviour, love harder. Give that last ounce of energy you have to seeing the world through their eyes.
  • Laugh together, enjoy each other, bring happiness in the moments you steal together.

A brief insight into our PDAday. Exclusions and accomplishments.

 It will not have helped him to develop the skills he needs to manage more appropriately when he returns to school. 

I’m in the sun on a half hour break that I’ve manufactured into what should have been my ‘day off’ this week. Its beautiful weather and I could be gleefully sunbathing whilst the babybears are at school (or getting on top of the housework – but self care is vital) however I have smallest babybear home on another exclusion period.

Exclusions for someone like him do 2 things. 

1) unsettle his routine and 2) provide great evidence for the ultimate solution to wanting to avoid ordinary tasks.

He knows why he is home. But that will have very little impact. It will not have helped him to develop the skills he needs to manage more appropriately when he returns to school. 

The days/hours I should have spent restocking my resolve and patience have instead been spent attempting to facilitate some periods of academic focus on literacy and maths. (Which believe me is not just as simple as inventing a task you’d like him try to complete.) Then carefully managing a timetable for him that will fill in the gaps in his routine lost through exclusion. He finds it actually painful to just ‘be’. He cannot ‘entertain himself’ nor imaginatively conjure up ‘things to do’. His demand avoidant profile pattern of behaviours are heightened due to the disruption in his routine so mummagrizzlybear suggestions are of course rejected. It is not straightforward. I refuse exclusion periods to be spent lost in a ipad-shut-off mode and he accepts and understands the ‘no iPad during school hours’ rule.  But this means I have to work hard to be a lot of things to my son; mum, carer, teacher, friend, play mate to name just a few.

*Blogging interrupted by demand for mummagrizzlybear to stick to the drawn up Schedule*

Rigid routines go against the grain for my ‘day off’ but here I am bound by a timer and a list 😩. Since lunch which was scheduled for 12.15 just like school, we have had individual play time (30 mins) which I had to stand my ground to get on the list as he hates alone time and finds it hard, then game time together (30 mins) then computer time (30 mins) followed by ‘cooking’/ evening meal preparation (20 mins), snack time, before some telly time (my window to finish blogging). This morning we’ve done English, Maths, water play and climbing before we had a visit from our SCIP Worker who had to leave promptly as scheduled despite us having not finished talking!

During ‘English’ we did some work on talking about Anger. Mummagrizzlybear used some of his favorite cartoon characters to try and open up conversations about how other people cope when they feel big emotions.


Trouble was his literal rigid brain found it hard to imagine anything other than what he has watched. Pikachu for example would ‘fight back in a battle to win’ and in Narnia ‘the goodies have to kill the white witch’…nevertheless I slogged on, helping him to think more flexibly, although I could see he didn’t agree that ‘talking to friends’ was likely to be a response neither he nor any narnian would opt for over fighting when worried or angry! Still, planting seeds, has to be better than ignoring the fact that he doesn’t currently have many helpful strategies for coping when ‘angry’ and therefore gets excluded. The task itself provided useful material to work on as he raged mid first sentence, angered by the frustration he gets when writing and internally battling his demand avoidance. He stormed out of the house, screamed and growled once he returned and shredded the work he had started. I used this to look at what had ‘helped’ and we used the scrunched up shredded paper as a tool to move forwards. Before each sentence or at each new frustration he could scrunch this paper and/or get the same release squeezing his stress balloon ball we made last week. It worked. As the task went on, he became more fluent with getting his ideas from his head to the page and with gentle support and reassurance he followed the written instructions. I was able to refrain from too much verbal guidance which reduced the stress of the demand upon him. Overall, we had a positive result and he identified that paper could be used by ‘Brain’ who was wound up and angered by ‘pinky’ and that pikachu could go for help at the hospital instead of fighting when ‘hurt’. The Narnuan, Beaver could talk to his friends when he was worried about the witch and Harry Potter could seek comfort from his pet.

Can babybear translate any of this to his own life I wonder? 

My current fear is that the answer may well be ‘no’. I’m reading a Jodi Picoult novel at the moment called House Rules, a story of a lad with aspergers, its early days but I know that the story is about him being accused of murder, but my mum assures me that despite the sadness she felt reading the similarities this lad shares with my babybear that its a safe read for me. I hope that means he didn’t do it. I got choked today on a chapter describing this lads prom and a the work the mum puts into him being able to achieve this milestone in his adolescence. She employs a social skills coach twice weekly and together they support him to work through his anxieties and social awkwardness but its still tinged with sadness as he cannot divert from his rigid routines and slides into the backseat of the car instead of alongside his date in the front. 

Babybear returns to school tomorrow after his 2 days reprieve. I’m newly anxious and extra tired owing to my additional emotional workload these past couple of days and tomorrow I’m back to work. Im full of question’s at the moment. 

Will these next few remaining weeks of term pan out OK? Will we ever suitably prepare him for the forthcoming transition? Can daddybear and I survive if things take a turn for the worst again? Will I ever get round to tending to (let alone blogging about) bigger bruvs current battles? Will our summer hols have to be this structured? Will the dragon of a Head from his base school miraculously appear at his next TAC and will I cope if she does?

I’m conscious that we have achieved a lot so far today and I’ve earnt my parenting stripes but I’m aware that it is this very day to day workload that can wear us thin on resolve and make us poorly equipped to manage a fresh hurdle  … So bigger bruv had best come home less volatile that’s all I can say!

I’ll be back…when the schedule allows!

‘Running away’ from PDA

I’ll never quit but I do have to tag out here n there

Im tired. This is more a diary entry that I hope I will learn something from in the future when I will no doubt look back and read my old posts like I have the others.

One full week back from my little respite getaway ( )

…and we’ve survived a bumpy road to the babybear turning 8… Read my post on birthdays to gain an understanding of just how hard this time of year can be. 

Summed up by his wish that ‘birthdays should be the same day as Christmas so it can all be over at once’ and this makes me so sad for him 😢. But I digress. We have survived. We even enjoyed parts of it and he mastered the skill of appropriate responses to gifts AND was affectionate and verbally thankful without prompting!! 

But today he’s been excluded again; partly a culmination of last weeks bumpy behavior and the icing on the cake today cementing his fate. He’s relatively unphased by this fact. He agreed it was a ‘fair’ sanction. He still feels justified in his actions though. Oh my little rigid thinker! So I’m faced with the ‘how do I deal with this dilemma’ once more. School feel that the exclusion is as much a break for him from the volatile environment as it is a punishment. They’d like me to help him regulate again before he returns. This makes my blood boil. I love the team at the school and we are a million times more supported where he is currently than we were before… But…I can help him regulate til the cows come home but when he’s out of my care, someone else has to step in. Its something he just can’t do for himself (yet) and although I carefully manage his environment to reduce anxiety provoking triggers at home, I cannot be responsible for this whilst he’s at school. Its my biggest disability. I wish I could protect him and support him each moment he needs me. But he has to grow. 

To compound the stress I was feeling, I’m behind on some work, its the wrong time of the month and bigger bruv decided today was a great day to kick off too. He’d already had a grounding over the weekend and had ‘lost’ his phone privledge but today he went for round 2, unleashing a load of verbal abuse when I said ‘no’ to something he wanted. Gee whiz.. I was so unprepared for what was coming out of his mouth and so short on patience from having dealt with babybear exclusion saga that I just cried. I just burst. It probably saved me from unleashing angrymummabear who would have beat herself up no end if she had resorted to an old fashioned smacked arse for being so disrespectful. So there I am. Cooking tea and sobbing my heart out. Fresh with really unhelpful thoughts about being an inadequate parent who has delinquent children! 

Part of my work involves teaching others to challenge their negative thoughts…so I crack on applying my more rational side and prepare dinner for the babybears setting aside daddybears and mine to share when he returns from his hard day at work. I remind myself that one parenting blip doesn’t have to become a whole parenting chapter on fails and engage the kids in conversation over dinner and insist that we go for a fun family dog walk when daddybear gets in.

Queue daddybear (later than expected) who waltzes in oblivious to mummagrizzlybears tear stained cheeks and announces that he’s going back out soon so if I wanted a family dog walk we would have to skip dinner. Ffs. Deep breaths. Queue kids kicking off rejecting lovely dog walk. Mummagrizzlybear pulls rank and with huffing n puffing both children are in welly boots and dogs are on leads. Daddybear hikes off with babybear now doing his best impression of being the least likely child to be excluded for violence and bigger bruv lags behind confirming the delinquent status and subsequently the family dog walk starts out as quite a staggered and separated family walk. Half way round the field, 2 members are heading off virtually out of view and I’m losing my cool with bigger bruv who has randomly developed the worst leg pain ever in an attempt for my attention. I’ve humoured him. Cajoled him and nurtured him, but he won’t let up. All I can think is that I’d needed to talk to daddybear about the exclusion, the plans for re jigging our lives whilst he’s off and importantly that I very urgently needed some self care me time if I were going to be home alone on excluded duties over the coming days. But daddybear is miles ahead and bigger bruv is still moaning, my report for work is now definitely late and its the wrong time of the month for heavens sake! 

I turn on my heel and RUN. 

Biggerbruv yells come back mum. But I just keep going, I picture driving away. I reach home flustered and because my car is trapped in by the work van I dart up the stairs, throw on my running clothes, grab my headphones and I’m back out the door and off the estate without them clocking me from the fields. I know daddybear wants to go out but I don’t care. I’m fit to burst and I run. I needed it. Spotify plays me ironic songs about relationships clinging on by their fingernails and I head for the horizon. About a mile in, the horizon doesn’t feel far enough away, the landscape feels like its closing in and I’m conscious that I feel panic. Breathing through it and lost in another tune which makes me smirk I’m at the top of the hill. I’m calmer. More rational and already sure that I will go back. Promising myself I’d only be half an hour, I’d return refreshed and daddybear could still head out. Come on Eileen gets me back up the hill home and I’m greeted by ‘I thought you’d gone forever mummy’. 

Sweaty , I attempt to clear the air with daddybear who is evidently miffed and obviously completely unaware of my teetering on the edge moment. I bring him into the picture and we begin to talk but then he drops in that he’s too busy to attend the autism course tomorrow even if I could find someone to watch the littlest. Mummagrizzlybear is hurt. His priorities suck in my eyes. Its week 4of4 and he’s made it to none thus far. I bleat out that it was never about ‘learning new things and more about showing me some support’ and head for the shower to sob some more. Somewhere mid shower he shouted ‘see ya later’.

Kids tucked up, I take wine to the office to attempt my now very late report but get sidetracked phoning family members, crying and running my husband down…

Queue daddybear returning. He looks softer. He’s calm. He offers a genuine ‘are you alright’ before telling me he’d been thinking and he’ll be with me tomorrow and his dad can have babybear. It takes me a moment to soften too; a wounded mummagrizzlybear can hold a grudge, but I relented and we talked as he leant into the office and I still avoided my report.

Its now just gone midnight, report complete, house quiet, wine glass empty and a little ache in my legs reminds me that today I chose to run away. Dramatic maybe but the anger boiling inside me motivated me back into self care and not self destruct. My kids were worried but probably less so than had I have taken the car. Daddybear and I have survived and hes even read the handouts from the sessions he’d missed of the course. 

PDA and the parenting shenanigans associated with it are tiring. Bigger bruv is all too often met by a mum who is already short on patience as babybear sucks up all of it. Relationships are strained and just every now and then I want to run the fuck away. Then my rational  thoughts kick in and I remind myself that I’m no quitter (grandaddybear reminded me if this tonight). I’ll never quit but I do have to tag out here n there. Running away with a plan to return is OK…even if it takes the first mile to plan the returning bit!