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.

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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.

A visit from the scary side

Night terror wakings are something quite extraordinary, they unleash a whole other persona

If you’ve ever encountered a true night terror, you may have met those eyes. The strange and distant aloofness with tears welling, out comes the scary side.

A breathless scream, a shout for mum, it sounds just like my son. But as I approach, without a doubt, I’m greeted by the other one.

For you, on odd occasions, have another voice and look. I’ve met you only once in daylight, but of the night times I could write a book.

Holding your hand for comfort but keeping back from smothering too, I’ll call for help from daddybear as mumma can see this isn’t her usual ‘Roo’.

Often there will be no rhyme or reason, perhaps something startled your rest, supporting you when you’re in full flow has always been a real test.

Your tearful plea asking for help, telling me you’re petrified, in a mix of sleep and wake you’re shaking, confused and unable to recognise.

You turn your head in that horror movie way and utter words that make me shudder, I love you so desperately and seeing you like this makes me feel a bad mother.

Without real understanding we seem to be past the worst, it could be illness, you might now rest, but at least tonight no one got hurt.

Those eyes beg out ‘protect me’, “I don’t know who I am”. In those sleep dazed wakings I’m always worried if I can.

Tonight you are safely back in bed and we’ve giggled through our reflecting, but night terror wakings always arrive when we are least suspecting

Keeping calm and low key seems to help, we move you when we are able, anything we can to keep you safe, comforted and stable.

Tomorrow you will not recall a thing, I’ve learnt to not raise the topic, it’s scary enough when it’s happening with not knowing how to stop 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.

“Specialbilities”

#Autism Awareness
One journey to diagnosis

Mummagrizzlybear has wanted to join #Autism Awareness, which has been superbly promoted amongst fellow bloggers such as https://www.facebook.com/LotsofLoveandAffection , but I’ve been stumped on how and where to start writing about the journey to littlest baby bears diagnosis. That was until tonight when a tongue tied slip-up of my 9 year old cleverly invented the word ‘specialbilities’ and there it was…my title…my starting point…bringing in my 9 year old’s perspective.

Having first given birth to a virtual text book baby, it is easy to look back and account for why we thought it such a good idea to bring another creature into the world. A ‘sibling’ was top of the priority list. I’d not wanted an ‘only’ child.

Skip forward 20 weeks or so and at the routine scan Daddybear and I were confronted with our first hiccup. “Please don’t be alarmed but baby has some abnormalities”. Impossible to not be alarmed by that word. Fast forward a little more and we make visits to different hospitals and specialists who after many weeks of pure torture manage to put our minds at ease and come up with a plan about the future. The future at that point consisted of the ‘birth’ and the days that followed. The abnormalities were not as scary as the first few professionals had led us to believe – at one stage we’d been told there was ‘ambiguous genitalia’ and this later transpired to be an issue with the kidney and bladder. This little creation had caused mayhem and unchartered emotions all from inside the womb. I really should have known then that this journey was going to be bumpy.

An on schedule birth far quicker than anticipated brought our smallest-bear into the world and made our first born the big bruv. Littlest bruv was an ‘unsettled baby’. The months that followed probably appeared ‘normal’. Both children met milestones. Mummagrizzlybear started a diary the day she were prescribed anti-depressants. I remember the shock. I had no idea I had developed depression. Sure my babybears were a handful most of the time but they were lively, spirited and energetic and I was doing my best to provide the text book upbringing that produced facebook worthy family photographs! The eldest started school and this gained me the 1:1 time with the smallest that I’d never really had until then. I started noticing and comparing my time alone with him to what life had been like with my first child at this age. This babybear was different. Harder. My little challenge. We kept to the expectation and attended mum and toddler groups and birthday parties. We were still invited back then! Before starting preschool we’d picked up on little things such as a high tolerance of pain and an apparent lack of response to temperature. He was easily irritated and sleep was a problem.

By age 3 the GP had sympathetically referred us to a community paediatrician who had met with us to discuss our concerns and kept him on his caseload over the next year or so for reviews which were not regular or all that helpful. Preschool did not report seeing the same issues we experienced at home and confused by this we explored lots of ideas and possible medical explanations for the challenging behaviours we encountered. We also began to jump through the hoops of the professionals as the Paediatrician sign posted us to ‘parenting programmes’ despite us having another older child who responded appropriately to our ‘parenting’.  During our own search for answers and with the power of the internet at our fingertips mummagrizzlybear began researching. Speech and Language were referred to by the Paediatrician to explore the possibility of ASD traits, however they attended the school to meet our son and concluded very quickly that because he gave eye contact that it was an inappropriate referral. I’d worked with young adults with Autism and Aspergers and something didn’t ‘fit’ our son, so at this stage we didn’t feel it important to pursue this any further. He began to make progress at school and separately mummagrizzlybear had gained confidence and with therapy and a new focus i’d overcome the need for anti-depressants. However, my search continued. I felt there was an answer somewhere to explain the difficulties we had. Innocently and quite by accident, I came across ‘PDA’ (Pathalogical Demand Avoidance), a form of Autism, which was like reading a text book on our son. I remember reading it and crying. Daddybear cried too. Full of confidence I penned a letter to the Paediatrician, the health visiting team, the school and the GP explaining why we felt that this should be investigated further. PDA explained some of the Autism traits but also gave an explanation about the ‘surface level sociability’ and eye contact as well as giving an understanding about the difference between home and school behaviours. It was a relief to read that there could be an actual medical interpretation and less finger pointing about parenting capacity. The wind was quickly knocked from my sails as we faced the critical responses of professionals who did not like parents attempting to medically make assumptions about probable diagnosis. Every service at that point seemed intent on disproving our assumption. Within in months of being discharged from the paediatrician who coincidentally reported that PDA did not exist and was not recognised in this part of the country, mummagrizzlybear made a phone call to a support agency seeking advice about new presenting behaviours in school and how to go about getting support when there was no diagnosis. This call was handled by a friendly, warm lady, who listened and with limited details asked me tentatively if I had ever heard of a condition called ‘PDA’. We laughed and shared an understanding of each other’s circumstances as she revealed that her son now had this diagnosis and he had first been seen by the same paediatrician as we had just been discharged from. Recharged, I went back to the GP and requested that we be re-referred back to the community paediatrician. Secretly I hoped we would be lucky enough to get a different consultant this time around. At this stage we had a family worker supporting us due to the volatile nature of the behaviours at home. Things had peaked and it was evident that our son was not coping and that his mental health and well-being were being affected. He’d become more and more Jekyll and Hyde like and scared mummagrizzlybear with his threats to harm himself and others.

Here starts the waiting game. Our GP referral to the Community Paediatrician was ‘sifted’ and instead sent to the ASD Team for consideration. The ASD Team got in touch with us to request additional information and this prompted an effort for a collaborative approach from home and school. School now took the stance that they were ‘managing’ his behaviours and ‘coping’ without any extra intervention, however they agreed to support us in providing additional support to the ASD Team. A couple of months passed before we were notified that our sons referral had made it on the waiting list for assessment. I’d like to insert here feelings of relief but recall more distinctly the dread. The dread that we were potentially sitting on the wrong waiting list off the back of  our mere parental assumption about PDA. In the mean time the Family Worker had attempted to get him seen by CAMHS but this too had been sifted and ‘his case’ discussed at a Primary Mental Health consultation before concluding that as he was on the ASD waiting list he should not need to be seen by CAMHS. The ASD waiting list was 18 months and rising. During this time an acquaintance from the school gates who noticed the difficulties we were encountering (where other people turned a blind eye)  recommended a private Occupational Therapist who had recently supported her with her children who presented with some similar behaviours. With a little more research, we booked an appointment to meet with the OT, and reassured by her initial assessments, observations and our sons apparent trust and comfort when visiting her, we agreed to pay for a SIPT (a sensory integration assessment). In the months that followed we held in our hands a comprehensive document detailing from a sensory perspective why our son behaved the way he did. It included recommendations to support someone with sensory processing disorder and we assumed as it were a clinical document those suggestions would be observed in a multi-agency type approach. How very wrong we were. At times we were met with very unhelpful comments such as “you will get any diagnosis you want if you pay for it”.

Over the next 12 months we managed to get school to amend IEP’s to include a sensory diet and they began to enlist the support of specialist services to write behaviour plans. Various interventions were tested and reviewed. Briefly TAC meetings were held, but at that time the team around our child was very small. Our relationship with school began to break down as we felt they began to withhold information from us and often dismissed any issues we raised with responses like “we are managing his behaviour” and “he doesn’t meet the threshold for… (fill in the gaps)”. We met regularly and complied with the support plan expectation for us to work collaboratively, however nothing felt collaborative; it had become an ‘us vs them’ situation, where at home we had become more and more isolated and in school we fought for what was right for our son. By age 6 the school’s managing strategy included a Team Teach response of regularly restraining our son where de-escalation tactics were ineffective. His challenging behaviour increased and as parents we felt the school were failing to respond appropriately. They kept telling us that he would not meet the criteria for an EHCP, but without this, we didn’t seem able to force their hand to engage additional support to help him. Their efforts to ‘meet his needs’ were inconsistent and by age 7 it became apparent that he’d lost trust in the staff supporting him. Most scarily he started reporting incidents where the staff had hurt him. He began verbally expressing how scared he was of going to school and displayed more and more angry behaviour. Admittedly, he was a volatile child, unpredictable, capable of lashing out and behaving aggressively. He’d throw chairs. He’d learnt to swear. He’d refuse to engage and disrupt lessons. But this wasn’t all of him. He was bright. He loved maths. He was observant and caring. When ‘calm’ he was endearing; a right little charmer. As parents we knew his triggers and we supported school all we could to acknowledge and respond to these but their set-up just couldn’t bend enough to make things inclusive for him.

Less than a term into key stage 2, we were presented with a document that stated that one of the consequences that would now be applicable if he presented certain behaviours was for him to receive a fixed term exclusion. We argued this. Surely this was inevitable given that he presented those behaviours regularly and as the adults supporting him we had not been able to consistently identify triggers nor solutions or strategies to help him at those times. We had however reached the point where they were willing to refer to a private Educational Psychologist for additional guidance and by now we were aware that his ASD assessment was imminent. We hoped that the collaboratively they would support us with suggestions. The EP came but his visit was unsuccessful as our son refused to engage. No great shock considering his ‘fear’ of ‘new people’ and avoidance of most things -even things he loved doing! Then came the phone call. “We need you to collect your son; due to prolonged extremely challenging behaviour he has been excluded”. There’s scope for a whole blog to describe the weeks that followed this. It was awful. We’ve been massively let down by the ‘system’ and to cut a long story short, the school refused to take him back, claiming that there was nothing further they could do and that they could not keep him safe. Weeks later he went through the Autism Assessment process and was very quickly diagnosed with Autism with a PDA profile. We have no doubt that the school had intentionally ‘moved him on’ before this diagnosis had been reached. I firmly believe that the school did not have his best interests at heart when doing so and neglected some fundamental legal principles in taking this action, something which when I have enough energy to do so, I shall confront them on.

For a time he was without an education provision and we compromised our employment needing time off to care for him (and to pursue daily phone calls and emails to various local authority departments) before he was eventually secured a placement at an Alternative Provision Academy. It was a little too close to a horror movie for mummagrizzlybear watching her baby bear struggle with the change, the transitions, the scary behaviours of the other students and seeing his mental health deteriorate. We’d gone from ‘managing’ in mainstream to a whole new world and the unsettled period had resulted in an even more volatile son. He’d attempted to harm himself, continuously put himself at risk, had stopped sleeping, was experiencing significant anxiety and was hurting his family members. The ASD Team witnessed the urgency for CAMHS to also be involved and luckily for us within 6 weeks of a diagnosis with one team we were also meeting with a Psychiatrist. The ASD/PDA diagnosis had not been a shock but was still uncomfortable to get your head around. We have taken the approach of wanting our children to be experts in understanding the diagnosis and shared things with them openly. I truly believe that ignorance is a far bigger disability than Autism and that so many children (and adults) have such varying additional needs that we should not allow ourselves or our children to somehow negatively stereotype such people. The Psychiatrist prescribed anti-psychotic medication for the perceived ‘intrusive thoughts’ that were likely to be exasperating his anxiety attributed to the PDA. The apprehension we felt about administering the medication was a challenge but we have gone along with things, hopeful that the benefits will outweigh the negative side effects. We are now at a place where an EHCP has been applied for. His temporary education placement will ‘keep him’ for a term or two more and support services are beginning to come out of the wood-work. He is nearly 8 and each day throws up new challenges. We are tired and wounded, and at times we feel we are failing but we are resilient (you have to be) and creative about coping strategies. We are warriors with invisible armour. We are a team.

I’ve mostly removed emotion rom our story. Probably subconsciously saving this from becoming an extensive rant about the crap we have gone through to reach the point of diagnosis. Equally, if I allow myself too much time to reflect over just how bad things have been over the past 4 months in particular, I may well jump off the nearest cliff or onto the next plane out of here.

Living with specialbilities has its plus points. We are constantly learning. Our house is a sensory haven. We view the world through fresh eyes. We have a new appreciation for the small things – minor victories that other ‘normal’ families overlook. We’ve expanded our support network with people who understand and we’ve filtered out the more unhelpful, judgemental ‘friends’. We have learnt how to monitor and take care of our well-being, practicing self-care and being less critical when we have ‘down moments’. We make the most of the little extras like a ‘free carer’ perk or a ‘queue jump’ ticket and no longer feel ashamed or guilty for doing so. We know how to ask for help and have learnt to reach out to others who may need our help also. We can voice our needs and manage the balance of home life, work life and the special needs jungle of appointments and meetings. Our children know how to talk about different needs and are supportive of other children they meet who face challenges. We have many a moment where we crack or crumble but we are a family who have learnt the importance of communicating our struggles and overcoming them together. We have not been beaten thus far and that’s because as a family we have specialbilities.  Acceptance is key.

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