Autism Mother urges other ASD & Disability Parents to Vote on Thursday #GE17

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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.

Conservatives, Well.

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.

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Get our voices heard: Fundraising

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Dear all

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

Bernadette

If you would rather give anonymously you can do so here at my Just Giving page

 

 

 

Here is the link to the Artrix Exhibition Accused: an Autism Mother 

 

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ACCUSED: An Autism Mother – the Art Exhibition

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So here it is, the exhibition is now live and official.

artrix-logo‘ACCUSED: AN AUTISM MOTHER’ at the Artrix Arts Centre February 2017.

Supported by Arts Council England and Worcestershire County Council

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Exhibition:
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.

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Vic Derbyshire show brief mention of FII & Child Abuse in Fatigue feature

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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.

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Child Protection update Children’s Services & NHS Eff up

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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?

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Letter to our MP re NHS & Children Services #ASD #PDA

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I’m publishing a Blog Safe version of a letter I wrote to our local MP following the Child Protection order placed on my Children.

I feel that even though this is a brief encounter with the reality of what we as a family have gone through in recent months, it perfectly summarises the injustice of this case, the way the local authorities are in cahoots and the blatant nepotism that occurs within small-town Local Authority/NHS teams and the ‘Higher Powers’ they believe they hold.

 

 

I love this opening statement by Lydia Lunch in her autobiographical book ‘Paradoxia’

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But, in this instance, I feel I still need to protect my beautiful little family from more shit.

Not sure how this is going to work…I’m taking out names and replacing them with professional titles. I am definitely not doing this to protect the people who caused us harm. I will be getting to them in due course, don’t worry. Where I talk of the children, I will talk of The Boy and Toddle (bearing in mind this whole thing only came about because of the lack of diagnosis for the Boy and Toddle is only affected by the ridiculous accusations of is parents being accused on FII, so in turn is clearly afflicted too.)

I will however state to print that the teams I am referring to are:
Redditch and Bromsgrove Child Development Team
Worcestershire County Council Children’s Services
Redditch Early Help Hub

Our MP has been really helpful, and I met with her about this issue. She didn’t rush me, she let me take as long as i needed and she listened to what I said. Regardless of the Political Party, and how some of their decisions impact on our lives personally, I actually like her quite a lot. She did contact the services on my behalf adding weight to my complaint, but having had a very lame reply from Children’s Services, and still being stuck on Child Protection after a postponed Conference Review, I need to chase this up.

Letter Begins:

Dear Our Local MP

I have asked to meet with you regarding a Section 47 Child Protection Order that my children have been placed on. This is due to the so-called “significant emotional harm” that I have been inflicting on them. They have claimed that I am guilty of Fabrication and Induction of Illness (previously referred to Munchausen’s by Proxy). This has devastated me and my partner and the allegations are far from true. I am sure this is an obvious thing to say but the very fact is that we have proof to disprove this NHS/Social Services allegation and it is being disregarded by Social Services Manager without thorough investigation.

Firstly, the referral to Social Services was made by an Occupational Therapist we had been in contact with regarding my son’s behavioural and sensory difficulties. The Child Development Team claimed that The Boy was a normal 3 year old boy and they were not seeing the difficulties described at home. The strategy meeting held by Social Services was only attended by NHS ‘professionals’ and Early help hub representative who we had never met and no one who was able to defend our corner in our absence. They were all singing from the same hymn sheet as they all work in the same team, none of whom are experts in ASD/PDA. The team had previously decided that:

Quote CDT Meeting 4/11/15 – All

“ All agree that The Boy does not meet the criteria for Autistic Spectrum Disorder including PDA (Pathological Demand Avoidance). Presentation: Significant anxiety issues. No developmental difficulties. Mild expressive language delay and delay in attention skills.” 

There are many issues with this and i have placed a complaint against the NHS staff involved with PALS, as they have clearly highlighted the areas of difficulty that The Boy presents, but have not attributed them to the very condition that we felt prevalent. Autism Spectrum Disorder/Pathological Demand Avoidance. There are many instances that the ‘professionals’ have misplaced the blame for The Boy’s difficulties and we have had to defend our parenting and motives. I have evidence that the NHS have been seeing the difficulties and the symptoms they described themselves are perfectly befitting of an ASD/PDA diagnosis. But PDA variant is rarely diagnosed and less prominent than both Aspergers, and what is now called ‘Classic Autism’. The team work to a fixed criteria and have aligned The Boy’s difficulties with parenting and particularly my own mental health condition.

The final NHS ‘diagnosis’ of The Boy not meeting the criteria should in fact be discredited as i understand it it is not NICE Compliant as there was no present Consultant for The Boy and no Psychologist present at the the CDT meeting where the decision was made.

I have also since found out that in the NICE guidelines, it is the duty of the NHS professionals to feed this ‘diagnosis/or lack of’ in person to the family. Instead, the meeting went ahead, with an Early Help Worker present, who then was the person, who whilst i was arguing our case on the phone with her, was insisting that The Boy DOES NOT have anything wrong with him. That is what and how i was told, and a good few weeks later did we get the minutes in the post from the CDT meeting telling me the NHS position on diagnosis.

Secondly, the Social Services accepted a referral, not investigating that the person who is responsible for deciding a case of Fabrication/infliction (FII), the Paediatric Consultant, was in fact Dr H.A, the only Consultant in Redditch & Bromsgrove, someone who i have previously made a personal and professional complaint about. Who we now know is also the Safeguarding Manager. I would have thought that this Consultant could not have been able to make an informed and impartial decision about whether or not to make a complaint to Social Services and should have referred to an equally senior manager?

Thirdly, and most importantly, The Social Services are now trying to discredit Private Assessments and subsequent diagnosis that The Boy does in fact have High Functioning Autism, PDA variant that were made by two highly respected experts in the field of ASD/PDA. Social Services are accepting NHS opinion over Private simply because it contradicts their initial accusations.

I have shared the very thorough reports with Social Services and they are trying to say they hold little/or no weight as they, in their words “have two conflicting medical opinions”. My argument is that they don’t. The NHS opinion is not Expert, and it is not (as far as i can tell) NICE compliant. They have ignored the root cause of The Boy’s anxiety without expertly investigating PDA symptoms and totally forgotten about the sensory, speech & social delay issues they themselves highlighted.

The Social Services report for the first Conference on 17th December, is a disgusting, discriminating accusation of FII. They have torn apart every facet of my personality to try and make it fit an FII case. The report focuses on Fabrication, and the “gain” i get from this, but the Conference focussed on the anxiety of The Boy, and that it was Inflicted on him. I am yet to see which is the most prominent issue they are following as i do not believe both can co-exist. If i were fabricating it, there is no evidence that i am “gaining” anything from this. And it is not possible to “induce/inflict” ASD on anyone. They have included my One Year old son in this who they have never encountered, and who has no difficulties. The Social Services are not medical and they are relying on the NHS opinion and taking their word. And why? We have disproved the allegation of Fabrication. But the social services are unwilling to accept this, making our next conference on 17th March, essentially the same meeting as before, the NHS will all have their vote when none have been involved for months and we’ll still be accused of FII.

The Social Services have been lacking in communication with us, they have not done what they said they would, they have misinterpreted things we have audio recordings of, it goes on.

Questions to you:

  1. Your opinion on Private Assessments and Diagnosis? is it worth less than NHS? When the Government are trying to push for privatisation of services, why, when we do go Private and call in very expert opinions, does it hold less weight with a Local Government Team such as Social Services?
  2. At a Child Protection Conference why does every individual involved in the CDT get a single vote and not a Team vote? e.g. if 2 staff from The Boy’s nursery attend the CP Conference they get only one vote, likewise if two Homestart staff attend, they would only get one vote. So why  is it acceptable that the NHS get several votes when they work together on the same diagnosis?
  3. A CP Conference Chair that is supposed to be impartial but is actually an ex-social worker working for the very same county council that are taking section 47 action against us?
  4. The assumption of guilt within the first Report, Conference and following Child Protection Plan. The recommendations were put in place to actually prohibit us from clearing our name and getting the correct diagnosis in order to help The Boy’s wellbeing.

Letter Ends.

So, i don’t know why i need to post this, i just feel that if i start posting all the correspondence that relate to this insane case, maybe i’ll feel that i have some online account rather than just my massive and ever expanding folders and living inside my own head with the burden of the injustice.

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CAMHS – WHAT? Discrimination against parents?

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CAHMS Discrimination

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..

NATURE. NATURE.

NOT nurture.

So there.

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