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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Child Protection Meeting, one year on.

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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.

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Embed from Getty Images

 

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Mommy’s Christmas Book of things…Thanks for everything, NHS, CDT, Aryu, Parsuns, fuckwits

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I felt the need to publish this now…i started a Christmas book last year for recipes, crafts, cuttings, lists etc…I couldn’t face it. I had a list of veg to buy/make like Red Cabbage & Cinnamon carrots – but that’s as far as it got. My heart was breaking, my eyes were constantly sore and puffy and i was aching in my gut like nothing else i had ever experienced. Merry fucking christmas you bastard accusing waste of space cunts, you ruined my family’s Christmas…my partner and i saved it for the boys. I don’t know how we managed..but we did. For them. The boys you could have had put in to Local Authority care…Thanks for being so royally shit at your jobs. I keep reminding myself that i WAS RIGHT all along, in EVERYTHING that i did. I was right, and YOU, yes YOU..Aryu, Parsuns, Garbutt, NHS, were wrong! Damaging & wrong.

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24/12/15

This years christmas couldnot have been worse –
I had hopes of keeping this book as an ongoing xmas to do/ memory
Traditional list of things

NO it’s been been Been Ruined
By me
Social Services –
NHS –
Wankstains cannot do their jobs so blame Me.
Us. Putting us through this shit shit SHIT

To my family      Man, Boy, Toddle
I am so sorry. I wanted so much for this Christmas- we’ve tried to put on a brave face – I Love You. X
Next year will be better. I hope xxxx

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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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