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I am on an Autism mission. I am crowdfunding for a Creative Public Engagement project. I am compiling the stories and the battles that need to be shared and desperately need to be heard by the public and by the Professionals. To do this i need a few things…fuel, coffee, printing, time and space. I need to maintain a presence, online and in person…and i need buy people tea, cake and the freedom to share their experiences of Autism & Invisible Disabilities, and the challenges it presents.
I need to continue the work i am doing and need to get the Parent Voice heard.
This project is already in existence and currently in its infancy. It’s supported with confidence by Artrix, Arts Council England and Worcestershire County Council as an offshoot of my Exhibition Accused: an Autism Mother. The idea has legs and an ability to share similar stories across many sectors and many a diverse group of families, this is a massively important part of what my work is…sharing and exposing truths and allowing the silenced, the shamed, the innocent and hurt an opportunity to have their voices heard by the wider world.
I am no self-promoter and i rarely admit i need support, and i never ask for any kind of help…until now. I am so passionate about this work and the importance of sharing our joint experiences, that i have started a Not for Profit company to make this awareness project go as far as it possibly can…it would be amazing if you could find something/anything to donate to add to the Breakfast Tree pot for Public Awareness and Engagement.
Thank you, fantastic people
If you would rather give anonymously you can do so here at my Just Giving page
Child Protection Meeting, one year on.
I was planning on doing some work today, once i have wrapped the rest of the presents…Santa’s Elves are too busy to wrap this many gifts…
We dropped Toddle and The Boy off at playgroup & School and came home after having the car washed at Tesco and trying out their (actually surprising good) breakfasts.
I suppose, i am stalling here, this is not what i came on to write about..
Anyway, the window cleaner has been and gone and just before he rang the bell for payment, i fell in to the wooden frame of the vintage settee we have, whilst trying to catch a falling present from the shelf above, and i bumped my knee. Now this is nothing unusual for me, or anyone..accidents happen, but to me more than most.
I am incredibly clumsy and have atrocious spacial awareness.
I fell on the floor surrounded by the massive pile of paper and toys, and broke down…half crying, half screaming in agony, half holding back laughter that was involuntary because i know how ridiculous that it is that i am crying so pathetically at my hurting knee. I am in so much of a silly mess, that Guy gets the door to the window cleaner, and i am still stuck on the floor when he returns. Very stupid. Then, i got up, with his assistance, got myself a tissue and should have been fine…but something just clicked as i saw the time on the coffee machine (yes, a clock on the coffee machine, it is a new Ninja coffee maker with a clock on it…cus we is posh ennit).
Again, i’m stalling…
So i realise that today is exactly one year since the Child Protection meeting.
It was 11:59am that i noticed the time on the clock, and it dawned on me, that this time last year i was sick, sick to my utter core that i had no idea what to expect in only a few hours time. And in that time, our lives could be changed forever.
I had this total tripe report that was filled with inaccuracies and blatant lies, and a massive misunderstanding of Autism PDA. And a massive misinterpretation of everything i had ever said or done in order to help and protect my Autistic son, and my then one year old son in turn.
I feel so fucking hurt, still today, my heart just exploded out of no where and i am regurgitating every single second from now, (the time is 12:08) to the end of that day, one year ago. At this point a year ago i was clock watching like you would never believe, I had to go to the toilet and change my underwear TWICE, yes, TWICE, because i had actually shit myself with fear, and the pain of not being in control of my life clearly followed through to a lack of control of my entire body. I was actually rather numb come to think of it. I could not believe that what was about to take place would really ever happen to genuinely honest and good people who love their children more than anything. It still seems unreal, impossible that my children could now, this very day, be in the care of strangers. My two beautiful boys, so amazing, so loved, so unimaginably incredible, so very nearly taken away from us. Very nearly removed from their loving home. And very nearly taken away from very loving, innocent parents. This is the power that the authorities have to ruin lives. As if the boys’ lives was held in the balance like that, how is it possible that their very existence was temporarily tampered with? As if people with no insight were capable of changing my children’s lives forever?…placing them in jeopardy like that, making them vulnerable and potentially, now, living away from each other, with strangers?! Merry fucking christmas indeed.
We were on Child Protection, and we now are not..However, this meltdown today is surely akin to Post Traumatic Stress? And is clearly a result of their total incompetence and and heartbreaking allegations and subsequent actions. My whole life fell apart, and it is still not mended, by any stretch of the imagine will this ever go away.
I had a silent miscarriage before i became pregnant with The Boy, it was picked up at our 12 week scan, and subsequently i had my dead foetus ‘evacuated’ from my body. Every year i remember that feeling of loss, and every day surrounding the sad event is an anniversary of it’s own kind. Yet, over time the pain has passed as i enjoy my two beautiful boys. And this Child Protection anniversary feels like that, but a million trillion times worse. And for a hell of a longer period…Our family Christmas was ruined and our 2016 crushed in the worst way possible. The NHS and Social Services were and are responsible for the ongoing pain i experience every time i think about the incidents of last year and every time i remember that my two boys could have been taken from me. Torn from their own lives. Siblings together, taken from each other.
The Authorities raped me in that process, they tore apart my entire self, and as a result, they took to my womb with a rusty wire coat hanger and scraped out the remnants of my self confidence, belief and trust i had in anyone..They potentially ripped away every part of my maternal instinct that led me to being the good mother that i was, and as it happens, still am.
So here it is, the exhibition is now live and official.
ACCUSED: An Autism Mother
Bernadette Louise creates a spectacle of oversized Healthcare posters emphasising the ‘invisible’ symptoms of Autism Spectrum Disorder, Pathological Demand Avoidance. In an honest response to the Authorities who accused her of Fabricating and Inducing her Son’s ASD, she uses documentary mobile phone images and direct quotes from the assessment process to highlight a desperate need for PDA Awareness. Quickly the professionals focussed on her as Mother, instead of the Child’s symptoms they were faced with. Bernadette intends to highlight the contradictions and accusations that caused the NHS to refer to Children’s Services resulting in a Child Protection
order. Through her Art and Spoken Word event Bernadette exposes the true harm caused by the Authorities to families with ‘unseen disabilities’.
Spoken word event:
An evening of poetry and spoken word including performances by those who are on and support people on the Autism Spectrum. Featuring the popular Autism Vlogger, ‘Autistic Genius’ and visceral Artist Bernadette Louise.
After a while of not posting, not being greatly social media sociable, i have decided to update on why and what’s been going down. I have had a temporary break from dealing with the NHS complaint and have been working on my art. This is good and bad. Having a break from the complaint doesn’t mean it has gone away or been at the back of my mind. Far from it. Not working on it has caused me more stress and made me have less focus on the things i need to do. I am constantly thinking about the way in which the complaint has been handled and what an abomination the whole situation was and is, and i NEED to fight them still. No matter how lacking in motivation i become, i still think about the things i should be doing. Trawling through all of the NHS and Social Services lies and defamation is traumatic, it is emotionally hard work and i would rather not be doing it. However, i cannot let them free of the burden they caused my family and will persist. Even if it is at the expense of my own health and wellbeing. They already did enough to scupper that anyway, so what’s a little more of a battering?
So in my break from the complaint, i have placed my energy on a project not too far removed from it and it is my art exhibition. The exhibition is about Autism Awareness, but not as you know it. It is a PDA awareness project, and a parental blame project. It is a tangible backlash and two fingers up at the NHS and the way in which they dismissed the very symptoms of PDA and blamed us parents for the issues. This is the reason for AWARENESS and it doesn’t stop at just reading a bit about PDA, it is about respecting parents enough to realise they are genuine and aware people themselves.
The work is based on the ‘Invisible’ symptoms of PDA. It also highlights direct quotes lifted from the notes and information i have from the NHS…that in itself makes a hugely interesting read.
There it is.
by Bernadette Louise
The exhibition is funded. It has backing from Arts Council England and Worcestershire County Council. And it is taking place within the very geographic region that harmed us, Redditch and Bromsgrove. The Artrix Arts Centre in February 2017. It isn’t that long away, and i am finally getting to grips with the content, but i have a lot to do and a lot to organise. I also have to be a parent and a partner, so the NHS idiots can wait a little while longer while i attempt to carry on with my life.
If anyone would like to contribute to a piece of work, i am running a public facing engagement project and would love to include your experiences too. Please do contact me if you would like to know more about that or any part of the work.
Photo by Mac James 2016.
Right, i do not know where to start with this update. The children came off Child Protection yesterday, at the first review!… It’s basically unheard of. Some absolutely disgusting allegations of FII (Fabricating and Inflicting Illness) were proved to be incorrect. We have a Diagnosis by two very well established Professional Experts in ASD/PDA (Autism Spectrum Disorder/Pathological Demand Avoidance). And we had one totally corrupt and non NICE compliant NHS diagnosis of ‘nothing wrong – blame parents’ that made the referal (they are fools! Influential fools though). So we very rapidly, but with a lot of my research and fighting came off Child Protection. Some might think this is a big deal, off CP, great. I wish it were that simple. The main thing here is the boys are fine, we as family are no longer threatened and we won, right? Yes. The feckers were wrong. But No, it’s a Small victory in light of everything that came before and has since followed. Literally the morning after the Child Protection Review where a unanimous vote took the kids off the CP plan, I recieved emails from the NHS Information Governance team that i’d been trying to get for a long while. The emails i requested under the access to personal data act and i finally got them.
Holy freaking sheeeeet.
Yesterday was a victory yes, but the way in which the Social Work Manager tried desperately to cover her arse by telling out-and-out lies was far from pleasent for us as a couple, and the lack of professionalism by the Chair and Social Worker surprised most of us. Anyway, the boys, they are great, safe, gone and going no where, and thank frig that’s all finished. Social Services messed up. Big time. It’s my job now to evidence all their errors and take them to court for various legal breaches. Of course, I’ll do that, it’s a bitch and it won’t be an easy task. However, although knowing it is pretty complex, i know it’s cut and dry from my perspective once i finally gain the strength to go through the reports with a fine tooth comb. Bang to rights.
Anyway…there is an in depth complaint in with PALS (Patient Liaison Team at the NHS) and it has been in progress for some time…it is this complaint that i feel gave weight and reality to my concerns with the initial referal from the NHS Child Development Team to Children Services.
As usual i have had do to all of the ground work, and working hard to get to the bottom of the injustice. I worked my way through reports, minutes, regulations, laws, all to get to the point i knew injustice had occured. So with our victory yesterday i should feel good. But nah..I knew the main task had just begun, the work has just started to see the NHS complaint through to the absolute end re Clinical Negligence and Disability Discrimination and i knew my work was far from done till i saw any kind of apology or resolution from Social Services…
Then these NHS emails arrived 24 hour courier signed for. This morning. Between dropping off the boys at nursery and going to our vet for pups last jabs…A heavy A4 parcel delivered by Royal Mail. Very quickly sifted through…and to pick up where i lost track above…holy freaking sheeeeet. The utter tripe in these emails is super intense, mega accussing and wholey stalker-ish and got to be infringing on my one and only right as a creative and passionate (and positively accurate) human-being. My goooooodneessss graciousssss, this is more mega than i ever imagined. They said some awful stuff which i will shortly divulge, they are so screwed, but this all takes my time, energy and emotion to fight. I have the fight today because I’m angry. I might have the fight tomorrow because it settles in, but how long can i keep fighting (right now i know I won’t give up) i worry about the impact on my family of my preoccupied mind and the excessive ‘work’ it takes to fight these f!ckers. I don’t have any legal training, but i know common sense, i know fairness and i know where to start looking, but i can only do so much. I’m now out of my depth with the legal side since these emails arrived today. They have so much to answer for. I will not stop fighting but it would be really refreshing if someone would offer some help, once in a while, when i can’t do all i need to as I’ve already done so much, is there nothing to take the weight of this particular logistical and administrative nightmare off my shoulders?Follow me