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First blog post  … “So, why am I here?”

Introducing the grizzly bear family

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I’ve been looking for a place to vent, a place to track my thoughts and offload some of life’s stresses and in the last few months I feel our little family has encountered more than our fair share of those stresses. I’ve taken comfort in finding and following blogs of inspirational fellow mumma’s and by fellow mumma’s I mean any of us who are just by chance still ‘winging’ it and getting away with it, or driven to maddness or drink (which ever comes first) and equally all those amazingly strong parents fighting for what’s right for their kiddos. I didn’t know I belonged to this community, but I do, and I fit in. My youngest son has a form of Autism (only diagnosed this January) and we’ve just now realised that we’ve all been guilty of trying to fit this little oddly shaped peg into the wrong shaped holes.

I should I suppose introduce us. I’m mummagrizzlybear, 32, mum to 2 fab lads and an outreach support worker for a domestic abuse charity. I love and live with daddybear, my husband of 10 yrs, he’s 35 and works in agriculture. The boys are 7 and 9. Bigbruv is just about text book & pretty much has been since pregnancy, this doesn’t make him any easier to raise but at least there’s always advice out there to help us mere mortal parents to navigate the joys of parenting boys. He’s really into sports, loves to be outside and secretly loves to please us, school isn’t his most favourite pursuit but he’s actually more intelligent than he gives himself credit for and most the time he’s a conformist! Then we have littlebruv who we affectionately call Roo. He’s never been anywhere close to being text book and the truth is I’ve struggled with this. We all hope our children will be individuals and put their own mark on the world but when you realise there are things that you don’t understand  about your child and then watch your child struggle it’s easy to find yourself asking why they cannot be just like the others? Roo loves lots of things bigbruv loves, he too enjoys anything active and being outside, he’s a mathematician wiz and has an eye for details… the littlest details! Roo also has PDA, which seems to be a form of Autism that few people know enough about, and even when you know a lot about it, it’s a really tough condition to live with.

Originally my intention had been to join the community blogging about PDA and the battle to get it understood and help our Roo-peg find a hole where he fits, and in doing so I thought I’d feel less isolated and lost but then I remembered my life isn’t just this… there’s more.

And so all I hope is that I find a release; if I also find others who get where I’m coming from then that would be amazing and if in sharing our ‘normal’ somehow helps another family to learn that they’re not the only ones going nuts then that’s even better!

My blog will inevitably contain ‘blips’…thats what we call parenting fails / PDA meltdowns / sibling wars / relationship cock-ups etc..please don’t judge! I plan to be honest and brutal because I want to capture everything real… everything, even the bits you wouldn’t want social services to hear (ha…yep, they’re part of our lives too now) but generally I’m an optimistic kind of person who is able to stick a positive slant on even the bleakest of life’s shit-bits and most of all I intend to keep the blog nanna-proof as though any relative could be tuning in at any moment so I’ll minimise my effing and jeffing!

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I’m back but this is where I have been

It’s been a long time; almost 10 months since I penned a post that shared our goings on in the Grizzlybear household and I feel I need to try and explain my disappearance. As a long time has passed, I’ll try my best to be succinct; a skill that might help keep me focussed and save you all from my various tangents that occur inside my head!

If you are joining me for the first time or had simply lost track before my disappearance, back in February along with an EHCP we had gotten our PDA’er, Babybear, a long term placement in an amazing specialist school after a very big fight for what we knew was right.  We had also decided to embark on a new adventure with Daddybear and take on the offer of renting a house that came with his promotion. Having only moved a year previous with huge disruptions and unsettling periods for Babybear this decision was not made lightly. The move would also mean that Biggerbruv was going to need to change to a different senior school when year 7 started, which went down like a lead balloon.

So why, with so much going on, did I choose to stop writing…

My adrenalin switched off

Once Babybear settled into his new placement our whole world changed so dramatically, we became unrecognisable, even to each other. It was as though something out of a fairytale was occurring around us and nobody could believe how fantastic things were. I couldn’t recall the last time I’d been able to relax, trusting that Babybear’s needs would be tended to appropriately, but sure enough, with each week that passed I gathered more and more evidence that this really had been the miracle we had been looking for. Now as all families living with PDA or another subtype of Autism will know, life is rarely all hunky dory all of the time and I can assure you that interspersed with the fantastic bits, were the more challenging times too, but one major thing had altered. The school that Babybear now attends has a completely different mindset, a breathtaking approach to learning and overcoming challenges and an incredibly supportive ethos. We no longer feared the phone ringing and instead developed fantastic relationships each time we had contact from school. The school addresses each set back with a “what can WE do differently” approach and then (you won’t believe this) they actually go on to DO what they say they are going to. Feeling this supported enabled me to turn off the adrenalin that kept me going for all these years. I stopped flooding my body with the chemicals induced by stress and in many ways became more laid back. Without the buzz from the high alert chemicals my brain failed to operate in the way I had become so familiar with and writing became a task. I’d sit to try and pen an update and freeze. There was plenty to share but my body didn’t know how to respond to the ‘positives’ and so the creative juices stopped flowing. I realised part of the drive for keeping my blog had always been about having a therapeutic outlet for the stresses I experienced. It also helped me to shift from a negative to a positive by coming up with and sharing our successes; sharing the things that worked helped me to feel better; but now here I was with it all working out for us all and I didn’t know what to do! I had a block when it came to writing about the good stuff.

Anonymity compromised

You all know that I write as Mummagrizzlybear to protect the identity of my children. This is something hugely important to me and right now is a non-negotiable. The public domain that social media has offered us scares me; as a child I only needed to fear someone finding my diary but today we publicise our private lives as a norm and as my children are too young to consent (fully aware of the implications) I feel it is my job to preserve their dignity and keep them anonymous. I am of course a ‘normal’ (?) mum and wife and friend outside of the mummagrizzlybear world and engage in some of the social media platforms without a pseudo identity. I do this as consciously as I can and even here try very hard to ensure that I am not writing posts or comments that in later life could offend or embarrass my babybears. As they become older and are inevitably able and capable of accessing all of my past ‘posts’ (these things never truly disappear once online) I do not want them to find things that would make my skin crawl! Friending an elderly relative on facebook usually helps to keep my internal monitor in check!

The compromising came about when Mummagrizzlybear was delighted to find she’d been nominated for an award for her writing. So wrapped up in the positive reinforcement this came with, I nearly broke my own cover. I wanted to tell people my ‘good news’, I hoped to get enough votes to get through to the next round and a small part of me had picked a dress in my head as though I was due a frickin Oscar!! Alongside this I’d become passionate about using Mummagrizzlybear to help other families and had become very engrossed in ‘sharing’ my work. I felt frustrated that in support forums I couldn’t say “I’ve written something that might really help you, go and check out Mummagrizzlybear”. I started watching counts of ‘views’ and ‘likes’ and ‘shares’ and began engaging in well meaning networks that support each other to publicise their work but all of this steadily shifted the real point of my writing and often got me muddled between my real identity and that of Mummagrizzlybear as I became friends (online) with other bloggers. We’d talk about meeting at conferences and I dreamed about connecting Mummagrizzlybear with a far wider audience, but to do that I had to be ME, and to lose anonymity would compromise my morals too greatly. It affected what I’d chose to write about and I became an internal critic believing that if we’d not had a ‘bad day’ that I had nothing worthy of sharing because if I had no wonders of insight my audience might become bored? Wow, what a slap in the face that was…the therapeutic release and true pleasure I used to gain from writing had slowly begun to fade.

The cracks began to show

When life becomes calm after such lengthy periods of stress and trauma you notice a void. Crazy as it sounds, that chaos and drama filled a big place in my life. I was a multi tasking queen who kept down a really emotionally strenuous job at the same time as meeting all of the demanding needs of her family whilst maintaining a very good self-care regime. I diarised everything and never missed appointments; I could virtually split myself in two for my kids when needed. Then I found myself alone in an idyllic house overlooking the countryside views with not another soul in sight, both my children were at school and I didn’t need to worry. I was still off work having decided that despite getting Babybear settled into the new school, I’d stay off to help smooth out the transition as we moved house again. Then as the holidays approached, we agreed I may as well stay home a little longer to save us on childcare over the summer and before you know it, it’s nearly Christmas! In the emptiness of my calmer world I came face to face with cracks that I’d overlooked for years. The calm allowed them to become visible and the space and time we had meant that now was the right time to address them. Painful as it was, I am glad that those cracks showed themselves. I’d envisaged hours of peace and beautiful views to inspire my writing but instead found myself consumed with new heartache that clouded my writing capacity. Our lives often become so very busy that we can neglect things that really should be a priority. In true Grizzlybear style we are overcoming the issues and finding ways to move forwards but what we are not doing is pasting over the cracks…nope…we ripped everything out around the cracks and decided to rebuild. All of this emotional work has taken time and energy and perseverance and has no doubt been a contributing factor to me not making the time to write as Mummagrizzlybear…but I’ve definitely written plenty as ME!

Bogged down by hashtags

Writing in pencil and just for me reminding me of the freedom I gain from expressing myself this way. I have all my old journals, scrap books full of poems and hand written letters and none of these ever required me to know how to appropriately use a hashtag. Blogging was a new platform for me and although I considered myself relatively IT literate a whole new world of communicating had been birthed and I have to confess I missed the invitation to keep up with the etiquette of social media. Whilst I am all up for learning new skills (and would genuinely like to be more competent) I do not know the purpose nor the protocol of using a frickin # (it just took me long enough to locate it on my keyboard). I do not know how to link to other posts of my own let alone link to other peoples work and I do not know how to ‘tag’ with any true success. In amongst the joy of connecting with fellow bloggers and reading their inspirational work I became very aware that I was lacking in this department. Mummagrizzlybear doesn’t tend to partake in activities that she isn’t good at (she either wins or she quits!)…so this started making writing feel like it was something out of my comfort zone and here we are, 10 months on without the foggiest in how to move this on!

Lastly, I didn’t know how to help you and felt bad about that

Mummagrizzlybear has always worked in ‘helping roles’, more recently in Domestic abuse fields but having also practiced as a counsellor I care a lot about wellbeing and the art of self-care. My working roles have enabled me to empower others and support them to change their situations and lives for the better. As Mummagrizzlybear reached more people, the feedback indicated that others took comfort in reading the things I shared, and this spurred me on to try and write in a helpful way, mindful that the audience may well read a nugget of inspiration that could really start to change their lives. Once life became calmer I longed to write a post that conveyed to others the magic bullet points of how to achieve the impossible. To date I cannot compile this list of steps and I feel saddened to know that so many families are stuck in the place that we were in. I very much wish I could come and walk besides you in your struggles and show you the doors to the changes you search for. If I could fill you with strength to keep going, I would, and the weight I feel in my chest conveys the guilt I feel for having been one of the lucky families who have had a very positive outcome; and we deserved it no more or no less than any of you amazing families battling systems and councils out there.

So, where are we NOW

The house is idyllic in setting in many ways and I appreciate the surroundings so much more than I ever thought possible; I notice the trees change, the glorious framed sunrises and the peacefulness of the lake and have learnt to embrace the exposed position of our new home to the wild elements it encounters. We’re currently decorating for our first Christmas here and for the first year have the space to have the whole family join us for the festivities.

Bigger bruv has survived his transition to senior school, despite having to make all new friends and although testing us as he navigates early puberty, he continues to make me incredibly proud.

Daddybear has spent a year in his new role and has developed hugely as an individual and has in many ways held the Grizzlybear family together through is determination to make things work and for that I love him dearly.

Babybear continues to thrive at school and I promise to write very soon about all of the wonderful things that happen there; Disney hasn’t got a patch on it, his school really is where dreams come true. He’s also recently joined a ‘youth club’ for young people with autism (a social skills programme) and he loves going and again there’s so many amazing stories I can share with you about this.

Mummagrizzlybear is finally sat at the well positioned desk overlooking the blustery havoc the storm is causing outside and she IS WRITING connecting back with my #virtualvillage !!! Yey! I’m just back from some training about delivering a new programme to parent-carers which is all about helping others to learn to take care of themselves better… I can’t wait to share more about this ‘Connecting is paramount’. I am also awaiting my DBS to come back so that I can get a start date on a new role I am taking on as a parent support advisor for a mainstream primary school. I’m going to be working part time and term time and I must say I’m excited but nervous. Life is getting busier so of course, now is a fantastic time to re-engage with blogging, it must be that I write better under pressure; too much time allowed for way too much procrastination! I’ve been re-immersed into the world of promoting well-being and this has resurged my passion to get everybody being accountable for their own self-care; no better way for me to start than to practice what I preach…so I’m BACK doing things that make me feel good.

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.

EHCP – The ‘success’ stories so far…

Where I needed more clout I approached those who know him best, and in true fighter style they did the rest.

I’ve just re-read our amended plan and wanted to share with you what I can. I’m surprised by what we have actually achieved and I’m spreading some hope, you have to believe!

Our original draft plan barely depicted my lad, causing me hours of writing for which I am now glad. I tore it to pieces, and diseccted it thoroughly, assuring myself I knew him best but my representations still worried me.

I wasn’t certain they’d be received with glee, as I’d written so much, so explicitly. I wanted his plan to not be ambiguous, I needed this plan to protect and reassure us.

I edited their draft with solutions not problems, highlighting their short sightings and detailing my son. I described all his needs, and how I feel they should be met, broke it down for their ease, so they didn’t break a sweat!

I spent hours writing, using their lingo, sourced evidence to prove I knew how to do so. For every ‘request’ that I made, a note I included showing them why I knew they’d have to approve it.

Backing up my points by highlighting the professionals reports, I was presenting a case they could not retort. Where I needed more clout I approached those who know him best, and in true fighter style they did the rest.

Hours of phone calls, emails and meetings now seems to be paying off and the pain was only fleeting. Having confidence to be assertive and not be pushed around, will ensure that my sons plan is robust enough to keep him safe and sound.

I’d taught myself the law, gained advice from every team and made sure our LA understood just how far I’d go, if you know what I mean. The prospect of court obviously filled me with dread, but I knew this threat was the only way I’d ever sleep soundly in my bed.

In a turn of events, our LA started listening, correcting their oversights and the plan they started editing. They’ve even taken on board my requests for additional outcomes and copied my suggestions for how these could be achieved for my son.

An accurate plan is only one step in the right direction, next we need a placement that can deliver all the suggested provisions. Our ‘dream’ school imply they can certainly meet all of his needs, its the commissioning process next and the outcome yet to be seen.

Today I am proud and to their contact I reply, with minimal suggestions for further amendments I imply, the plan is shaping up just how I wanted it to read and right now I recognize most of that is down to me!

Fight on for what you know is right, do not be dismayed, if the plan your given doesn’t represent your child then the court card you can play. Be clear about your views on your childs additional needs, then describe exactly what you feel a school will need to read.

Ensure the plan describes your child very explicitly, do not allow your LA to get away with ambiguity. IPSEA and SENDIASS are starting points for advice, be confident and remember you can’t always play nice!

In the long run getting the LA to comprehend your point of view, is probably the best way to get them to work with you. Hopefully you have at least one professional who you can trust, who can help your LA understand why the amendments to the draft EHC are simply a must.

A year can change ‘everything’

How christmas became something that could work for us

Its said its the season to be jolly, and in previous years I’ve felt such a wally. How could we turn Christmas into something he’d tolerate? When the anxiety brews from each thing that we celebrate?

Xmas eve as kids slept, hopeful Santa would come, our babybear cried into the arms of his mum. Afraid to be awake, scared he’d not get back to sleep, all of the stresses making him weep.

As Christmas morning woke, somehow Santa had delivered and despite the lack of sleep, the kids smiles gave me shivers. A well prepared Santa had left only small piles as this year he knew how important it was to bring less stress and more smiles.

‘Something you want, something you need, something you wear and something you read’, these were the tags from dear old St Nic, the gifts brought joy and anxiety was over quite quick!

We used cellophane to wrap some gifts to reduce the ‘surprise’ now we’ve learnt how much stress is brought on by the disguised. We slowed things down and saved gifts for later in the day, we avoided lots of commotion by doing it ‘our way’. 

Pokemon cards fill my house, what a clutter… But those are the things that delight our little nutter. He’ll frustrate me no end with his obsession for a while and eventually they’ll be redundant and then left in a pile!

With Minor little blips and only one session of screaming ‘I hate Christmas’, we found ourselves sat for a feast with minimal fuss. The food was devoured, a great joy for all, we later survived a board game, although it was nearly an order to tall!

Unfortunately that night the ‘bug’ did hit us, and the following days disappeared like we’d all been hit by a bus! We savoured plenty of family time, mastered some games and ‘quiet’ (reclusive) days turned out to be fine!

Its been different this year, that’s one thing for sure but we’ve minimized the stress and enjoyed it much more. We’ve managed much more than I thought we could and saw the new year in the way a family should.

I’m excited to see what 2018 brings and conscious that I need to try out new things. I’ve left my job, I’m planning to write, I’m now more available to push on with our plight.

In the weeks before Christmas we made huge steps with our LA. I really believe we will achieve a place at our dream school for our boy with PDA. 

Last year our Christmas was quite a frightful sight, our boy was out of school and tears flowed long into each night. Last year my husband and I had cried, hugged each other tight and vowed to survive. This year we’ve cracked it, our vow was strong, we’ve done more than survive, we lived and loved long.

I plan to share my tips for surviving the fight, learning to live again and keeping what you love in sight. A journey with PDA can be rough and I’d never have believed we would be just this tough. But 2017 you taught me one key thing, and that’s the tables can turn and a year can change everything. 

The ‘Disney’ of schools

A school that will offer him things we could only have dreamed of.

I learnt the hard way about how lonely it can feel to get devastating disappointing news having not yet had the chance to tell everyone the unexpected good news. Nobody shares in your pain nor can comprehend your response because to the outside world you are behaving irrationally at best.

Not telling people I was expecting in 2013 before finding out I was then carrying a baby with no heartbeat has shaped me and scarred me, even in areas of my life which seem completely unrelated.

Today I share with you some terrific news. I share it with you, so that just in case the worst happens, I can also share with you my grief.

At a meeting today with our SEN Officers we virtually had it confirmed that our babybear will ultimately end up with a place at our dream provision for him. The only politics in the way of them explicitly stating that we will achieve this outcome for him is that the LA still have some paperwork and processes to go through and some of this commissioning work will not happen now until January. Cautious that I was getting too ahead of myself I asked whether in their opinion I should be making attempts to visit the ‘potential’ alternative provisions that had been identified as being included in the commissioning process. I started to get a bit giddy inside when they whitled them off the list, ruling them out for reasons such as distance or incompatible peer groups, until we were left with just our top requested provision! 

My Aunty referred to this place as the ‘Disney’ of schools owing to the way daddybear and I have described it to the family. We’ve certainly popped it up there on a pedestal and I’m more than aware that we are hanging all of our hopes on a place we know relatively little about! 

What we do know is how we felt being shown around. It is not a section 41 school and has a small cohort. Gaining a place here is notoriously difficult because the Local Authority can use the ‘not best use of public expenditure’ clause if they feel that they have a suitable alternative that might meet a child’s needs. It is hugely expensive to fund each child’s place at ‘Disney’ but the package that is subsequently available to them once you get them through the ‘gates’ is second to none.

Babybear is currently in year 4 and I’d say since year 1 my hopes and aspirations for him have been steadily dwindling with each and every educational barrier he has come up against. In the past 12 months I’d lost hope for his future. On meeting the Head at ‘Disney’ and being shown round a beautiful, warm and bespoke provision my visions for babybears future began to return. They got exciting. This place has such a fantastic ratio of highly qualified and knowledgeable staff to pupils alongside an amazing approach to learning that mummagrizzlybear couldn’t help herself but begin to dream of the possibilities if she could first get him a place there! Nothing is too much. They’ll tailor his curriculum opportunities in a very bespoke way, they have on site specialist therapists and amazing resources available. There’s specially designed spaces for interventions and tending to sensory needs but more importantly their approach to removing barriers to learning is more about ‘what more they can do as a team’ than it is about stating ‘what a child’s difficulties are’. Last year ironically the funded school trip was to Euro Disney. This year they’ve taken a group skiing. These sorts of activities feel beyond the realm of possibility for baby bear but for the first time in a long time I felt I was in the company of a genuine Head who was passionate about promoting independence and supporting children to achieve their full potential whilst reassuring parents that his team of staff are capable of meeting each child’s needs. The Head was not shy about the fact that the reason they can offer the sun and the moon is because a place here costs a great deal. He was also clear that our LA does fund placements but it tends to be to those who shout the loudest. Babybear will fit in here because they can cater for all different shaped pegs; their holes do not discriminate. To give my boy this chance I will shout!

The system thus far had put us in a position where we had depleted energy, reducing morale and diminished self esteem. You could say parents at that stage of the journey are quite likely candidates for giving up or worse. Unless there is something reminding you that your child is worth so much more, then it could be easy to accept the first proposal made by ‘professionals’. After all, they surely know what they are talking about?! Or, some ‘other’ child presumably deserves or needs that place more than your child?! We doubted ourselves at times that’s for sure but we are fortunate to have an amazing team around us comprising not just of professionals who have come to know babybear fondly but also reassuring tireless family and friends who keep our fires burning when our own coal supplies get dampened. We are blessed. We remembered that our son deserves the very best we can find for him and we chose to fight to ensure we provided him with the best chances of accessing that. This ‘fight’ has cost us but I’m proud to say that it has not beaten us. Those of you following the drama series of The A Word may have watched and shared in our discomfort as the on screen family struggled with the divisions that living with Autism can bring to relationships. What the recent episodes failed to present accurately was the journey families have to go on to get a ‘specialist placement’ commissioned… Ha…they succeeded from one episode to the next to move their son from mainstream to specialist school! 

I’d had part of this ‘good news’ delivered to us a few days ago but something was preventing me from celebrating. The reserved ‘don’t get carried away me’ pleaded internally for me to be cautious, reminding me of all the times that we had been let down before. Today I asked the questions I needed to and today I chose to allow myself to embrace excitement and celebrate the fact that my fight appears to have not been in vain. The tables are turning and I can now finally hear professionals and powers that be using my language and terminology, we now at last have a shared goal. They ‘get’ my son now. They know him but they also know how strong I am and that I will not back down.

Negativity attracts negativity. Today I turn away from this. Today I started looking forward to next year and I have faith that next year he will start at his ‘forever’ school. A school that will offer him things we could only have dreamed of.

… And should we receive devastating news that for some reason something changes, at the very least, our nearest and dearest and #virtualvillage will be aware of why we would be hurting and torn apart… And from that I take some comfort and return to being blissfully excited about what 2018 is going to bring! ☺