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I am sending out a plea to Parents of Autism and Special Educational Needs (SEND)…A plea to the Mums and Dads who think that their vote won’t count, the “why bother’, “no-one listens to us” families, the families who have been let down by the current Government and the failing system we have so far endured on behalf of our children. I appeal to the disenfranchised mothers and fathers of children with Autism and SEND who have so often been devastated by a broken system and left with a feeling that there is no change possible for us. Well, we all have a voice and it is so important to use it this Thursday.
I hope to raise awareness of the relevance and importance of making the parent voice heard in Thursday’s elections.
I’ve been considering the Main Three Party opinions and their relevance to all of our Autism & SEND families. It is apparent from the promises that are made (and they are wishful promises that we need to support and get behind) that some parties care about our families and other do not.
In terms of favourable voting for our ASD SEND families, it has to be Labour for me and normal people like me and my family. We are not rich and we rely on the system for our healthcare, our Education and we expect it to be provided at the best possible standards, we are used to our services being funded and to be able to trust Professionals with our children, and for invisible disabilities to be recognised and continually acknowledged. Only decent NHS, Social Care and Education funding will achieve this fully functional role that many children access easily, yet is made difficult for children of ASD SEND.
In terms of Party Manifestos being nothing but wish lists and empty promises, i think it is important to support the party that even acknowledges the very relevant needs of Autism and SEND families. At least if we vote for the right party, the one that makes the promises, we have someone to hold to account to fulfil their promises further down the line. If we vote for parties that don’t even have an air of understanding of our families needs, how we challenge them on it later when they have nothing to answer for, no one to answer to? I have done the leg work looking in to the manifestos, and here is how it stands…
Lib Dems. They make a brief reference to SEND in one paragraph throughout the whole of the 95 page manifesto. They state that they will “Ensure that identification and support for special educational needs and disabilities takes place as early as possible.”
Now this is a mention at least, however it does nothing to say how they will do this and how it will be funded, relying on the fact that all Healthcare Professionals and Education Settings will comply with their wishes and the Lib Dem desire to support SEND children is not sufficient engagement. Let us not forget, this all relies on whether or not an SEND has been identified in the first place, and what it takes for the children families to get to that very important point.
They mention the word Autism once, in a flippant and second hand manner, lumped in with Learning disabilities. Now i find this dismissive of high functioning Autism and those with other invisible conditions that do not have learning disabilities, this is dangerous territory in my opinion. Invisible disabilities are already way underfunded and the Tory statement that the two should be combined is unacceptable in my view and an indication of their long-term money saving endeavours…potentially a further reduction in services to those who are not easily diagnosed as Autistic, and with all of the cuts that the conservatives are insisting they will still make post the Election, i simply cannot see how or believe that they intend to fund the massive overhaul of services that needs to take place in healthcare and education for the Autistic and SEND communities. The NHS cuts include unfunded CAMHS, a service that the majority of children with invisible disabilities need access to. Constant cuts to to local Councils leads to inadequate children services, lack of training and massive lack understanding, causes huge problems and extra unnecessary workloads dealing with unfounded cases of Child Protection. None of this looks likely to change within the Tory manifesto promise, nor going forward after Thursday.. “We have a specific task to improve standards of care for those with learning disabilities and autism.” Again, i wonder how they will roll this out considering the lack of money and the lack of Autism awareness that this one sentence screams.
Ok, so for my money, it is Labour all the way.
To get our voices heard we firstly need to be understood..The Labour manifesto tells us straight away that they ‘get’ autism, it is in the language, the tone and the coverage it gets within the manifesto. There are many references to Autism and SEND – but aside from that, it is written with both fact and empathy. They speak of “Neurological differences”, “Neurodiversity”, “inclusivity” and “support” for children and Parents..the manifesto goes beyond simply making a brief reference to Autism & SEND for the sake of ticking a box as with the other Parties. These promises seem attainable. With more money put in to the NHS, a diagnosis will be better timed and therefore have better long term impact for all involved. This obviously avoids the massive cost implications that a no-diagnosis could potentially turn through with unrecognised system being left to fester. Early diagnosis and correct support for ASD and the whole family will not only save money, it will save families. It will save lives…just by getting it right first time.
By funding better resources a Labour party is our only hope of gaining the appropriate understanding, funding and ongoing support for the long journey that SEND is…This journey beings with a GP or Health Visitor Appointment and goes all the way through to additional Teaching Assistants in school, flexibility of thinking and up to date autism training in every sector, moving all the way through to DLA or PIP payments. An early understanding will set up our growing kids to not have a constant battle to explain themselves, or to be understood in the wider world.
In our personal situation, i feel that the NHS and Social Care were incredibly unaware of the reality and importance of gaining the right diagnosis and ‘seeing’ the disability of our son at all. Had the small and insular team been sufficiently funded, or had i had time to approach the CCG to insist on expert in ASD PDA, we could have avoided the allegations of Fabrication and Induced Illness that the ‘team’ decided to tarnish me with. Had they been better trained with up-to-date Autism advances then, perhaps my questioning their competence might not have been so challenging to them and the rampant parent blaming and inherent culture of incorrect personal judgements that ‘Professionals’ think that they can lay at the doors of our homes. We would never have had to prove our innocence of FII and pay a Specialist via Private consultation to gain our ASD PDA diagnosis. One that has now been rolled out across the three quarters of my family. An horrendous fight to save our children, my partner and I were treated like dirt by the ‘System’ and the Professionals. NOW, if we had been able to tap in to expert opinion in the early stages, listened to when we asked, and experts been funded by the CCG prior to Occupational Therapists ill-advised referral to Social Services, perhaps our story would have never occurred. As it happens, the lack of understanding in Autism families and our version of events is a far from a one off, it is a silent epidemic within the NHS and Social Care system, one that is worsening all of the time and I put this down to lack of funding, lack of knowledge and lack of empathy…something that the Labour Party and Jeremy Corbyn do in fact promote and align themselves with improving massively for ASD and SEND.
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.
THIS SHOW NEEDS TO START TAKING NOTICE OF WHAT IS GOING ON WITH PARENTS OF UNSEEN DISABILITIES
C’mon….It is about time that they responded to one of my emails and actually decided to break the silence and help families realise that they are not alone with the horrible and INCORRECT allegations of child abuse that arise from the healthcare servcies who do not see the invisible conditions. YES that person who spoke about fatigue and ME was right (post edit: Jane Colby of Tymes Trust), if something that the health professional suggests doesn’t work, (in this case it was discussing CBT with Chronic fatigue) they automatically assume that the parent has another agenda, a disgraceful and lazy accusation of Munchausen’s by Proxy. It is tearing families apart and it is not only with Fatigue as per the feature on the show just. IT IS WITH AUTISM. AND IT HAS HAPPENED TO ME, MY PARTNER AND OUR CHILDREN! No harm was found, after a hell of a time. Yet, it was gutwrenching and unfair.. and no one has apologised for being WRONG.
Please can someone pick up this story??? Much more needs to be done urgently to lift this overwhelming shadow that the NHS and Children’s Services place on innocent and incredibly caring parents.Follow me
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.
Please follow the link and sign my petition for ASD/PDA recognition by the Local Authorities and NHS Teams we deal with daily as parents. I am petitioning against the Parent-Blaming culture that is rampant amongst ‘Professionals’ and want to draw more attention to the actual impact their actions have on families
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
Now change the words “High levels of anxiety” for ‘Cerebral Palsy’
CAMHS – Case now closed. Report letter written and seen by parents. Cerebral Palsy. Recommendation made that parents seek support for their cerebral palsy. The Boy senses their cerebral palsy and so gets cerebral palsy too.
Now change the words “High levels of anxiety” for ‘Cancer’
CAMHS – Case now closed. Report letter written and seen by parents. Cancer. Recommendation made that parents seek support for their cancer. The Boy senses their cancer and so gets cancer too.
Right….read all that? Too much? I usually am. But i am totally screwing at the actual blind-sightedness of these people. I cannot understand for one second why they would struggle to take on board my partners very own difficulties as potential GREEN LIGHT for what is going on with our son. Yeah, genetics. It’s a no brainer. PDA.
My own anxiety has been compounded beyond belief in recent dealings with this kind of ignorance and essentially disability discrimination. I have a diagnosed mental health condition brought on largely in my adolescence, it has come to the forefront of late due to the stresses we live under. Is this truly something that CAMHS would like to take me on about? To suggest that it is our doing that our own disabilities are causing the situation / causing our son harm? To suggest for a moment that i have passed on my mental health disorder to my son, WHAT THE EFF?
Our personal anxieties are born out of perfectly reasonable-reason, much of which can be attributed to our environment and upbringing, however, my partner has a neurodevelopment disorder fuelled by anxiety and that can not be dismissed here as, us, simply needing to deal with our own shit first. HA! What the flying effing gitswine?!
….Oh and yeah, we have to two children. The second one is a different kind of a child. So clearly, we have broken The Boy but the Toddler Tank got away scot free. How cruel and insensitive of our disabilities to cause so much crap for one child to damage him for good, and yet the other gets off pretty lightly. Except for the fact that he doesn’t…he is assaulted every.single.day. by The Boy’s ‘anxieties’. But no, it’s pure aggression and lack of interpersonal skills and empathy that are causing the second boy Toddle to be knocked from pillar to post, so, that’s our fault too..