Hidden disabilities and ‘having’ to explain the impact of them…

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Well the vary nature of ripping apart your own personality or that of some you love is incredibly negative and damaging to self confidence. Whether it is your own hidden disability or from perspective of the parent, its emotionally exhausting when trying to tease out what the problems are, and what is WRONG with you or your child, and eek out each piece of what makes you/them different in a world when it’s not ok to be different We spend most of our lives hiding the difference to the rest of the world, effectively a life spent lying, trying to convince ourselves about how normal we are. But it ends up in a destructive spiral of real life events, that we are then forced to draw upon in order to get the help we went so long without.. It really isn’t very nice to have to fill in forms, go through bullet point after bullet point of everything that makes you, you, or your child who they are. And all of it the worst parts of them, or you.

You realise, how very difficult things really are, and how you must be a detestable person, and how, you scraped by so far through life, it’s impossible to imagine you’re still going.. each and every untruth, misunderstanding, aggressive encounter, confrontation is just what makes some of us human, our kind of human. And these confrontations wouldn’t happen if people just learned that actually, everyone comes at situations with their own agendas, and it’s just that some of us have stronger wills to do or not do something. It’s intrinsic in our make-up, the building blocks forge barriers of protection early on, however, it is not difficult for them to come crashing down, piles of rubble and dust when something out of the ordinary happens, it can be anything.

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BBC H&W Radio re Ofsted SEND Report 4th Dec 2018

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On the 4th December, i had an early morning call from BBC Hereford & Worcester, they wanted me to feed in to a discussion on volunteers within the NHS relieving pressures on the system. I declined to comment as it’s not really something i have any experience in, apart from working with the NHS in the past, it’s not my ‘area’.

However, i was compelled to talk to them about something that had made the news in a big way on that day, that they didn’t seem to be covering; the OFSTED report that had been released that slammed SEND provision. I took my chance and we did a pre-recorded interview.

Thanks Andrew Easton for listening, and thanks BBC H&W for continued support of my SEND Awareness work, particularly ASD & PDA.

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Social Housing, it’s too small

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Social housing

It’s too small

Too small for Autism.

As i watch my children ‘play’ it dawns on me that no matter how positively i try to spin this house move, the down sizing, we are just being set up to fail. The autism doesn’t matter, not when it should. Not when it’ll be making life unbearable, they insist on killing your morale and destroying mental health of an entire family because the s106 took priority. Our priority status meant nothing but someone with no need gets preference over our disabilities. Incredible. Devastating. 

I watch the boys and i know it’s too small, i watch them and I can’t cope with what it means, no matter how hard i try to pretend. 

The housing association neighborhood officer actually asked me if it will go away, get better, is there any therapy or treatment. 

No. 

This is why it was so important that we had the right house. And this is why it’s so clear that we haven’t been considered important enough, because no one knows anything about the life we live. 

If my child sat there with no legs, would she ask if they’d grow back? Would they insist on the child living in a maze of stairs, an escher sketch? 

This is how it is for us right now. We are being forced to move to a house that is too small. Too much to cope with. 

Physical boundaries and tiny rooms, no one cares about the invisible. 

That scene from willy wonka, the room they all go in, and can’t find the way out because it’s so small, they are so cramped, so claustrophobic and creates anxiety and aggression, that’s what this house will be. 

And we have no choice. 

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The inhumane face of Tory Worcestershire

Share this articleFacebooktwittermailFacebooktwittermailIt’s not often the working class gets anything from a Tory. The Conservative party have long been the party for the rich few and not the ‘normal’ working class many.

Now what happens when your ‘normal’ working life is taken away by something like illness and/or disability? Well, you might take some time to get your head around the life changes that this brings, suck it up and, eventually you might want to, or need to ask your Council for some help. You are entitled to do that after all, that is what the welfare state is there for, to support your welfare in times of difficulty and hardship during whatever situation has brought them.

Finally, in a whirlwind of tests, procedures, assessments and shit, you muster up the courage to ask for help and you find you are faced with a Conservative Government, Borough or District, and County. It is at that point that your truly hit a wall.

A huge wall of legislation that is there to support the few, a benefits system not fit for the sewers let alone fit for purpose, and the sort of housing that would render some homeless as an alternative option. Inhumane, and out of control cuts and regulations making it really, actually impossible to carry on. No hyperbole, just genuine adversity.

There is no help, or so you are told.

If you pursue the kind of help available when you have hit a low point, you will quickly find that not only has your morale and self-esteem taken kick after kick to the bottom of the pile, the lowest ebb of a dank basement, if you can envisage being kicked down further still, (yes, it is possible to go there) then what is beyond that deep sense of darkness? You will have to go further downwards scraping your knees on muddy stones, whilst your hands become rough from scratching away at each unwinnable barrier, tearing away the manicured fingernails you once prized so highly. Your face dirty with wet, red clay, ready to ‘plead and beg’ for something that you paid your whole adult life for, but are now told you’re not entitled.

You are explained to, that actually, you will have to lower your expectations, not get what you need, and in turn, not be able to continue the life led for the many years previous, because when you ask for social security, housing support or any additional requirements be met, it is youthat needs to change. The system is broken, so it’s only way to continue to satisfy itself, is to perpetuate the devastation, and you will become broken too.

It is you and your family who are told that you have to adjust. Adjust, not because of the Health Condition, the wheelchair, the Autism, mental ill health. You are told that you have to adapt, not because of the lack of access to work and changes of housing requirements, it is you that has to adjust your mind-set and adapt to the cruel Conservative Government, National and Local expectations that are suddenly inflicted upon you. And it is you that has to keep picking yourself up at every knock down.

It’s exhausting, right? And you’re worn down to the quick and, you know what? It’s not even your fault that your circumstances changed, and it’s not your fault you were born where you were, have this condition or illness, and happen to be in a heartless State that is taking away so much from those that, through no error of their own, just cannot adhere to the status quo, cannot do things any differently, cannot work any harder, and yet it is you that still gets nowhere. That is what a Tory Government does to people, and then it goes ahead and puts on a steel toecap boot, one extra kick in the gut, just to make sure you don’t get back up.

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PMQs “we will be introducing Education Health & Care Plans”..I’m sorry Theresa May, what do you mean, WILL?

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“we will be introducing Education Health & Care Plans”..I’m sorry Theresa May, what do you mean, WILL BE?

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Overview & Scrutiny Committee: Autism Assessments in Worcestershire

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Response to: Worcestershire County Council’s Overview and Scrutiny Committee on Autism.

Scrutin Committee 28.2.18 Assessment of Children and Young People who may have Autism

With reference to the Review document attached, I appreciate that there are more referrals for ASD coming to light than ever before, and I, more than most, can be cynical about the extent of suspected ASD being banded around. I admit that I am protective of the ‘label’ that gets my 5 year old son his support and, as a late diagnosed adult; I hold my hands up to being blunt in regards to ASD and what that truly means especially when it coexists with another medical or learning disability.

The report suggests various reasons for increased referral rates, the first being increased awareness. This is a good thing, without a doubt – it means people can start understanding the variety of Autism Conditions and know what to look out for in their own children. This should not in any way be acted upon negatively, which unfortunately Worcestershire County Council does in their Overview and Scrutiny Committee outcome on ASD.

Another reason for increased referrals, apparently there is  “anecdotal evidence that some people may incorrectly believe it acts as an automatic ‘gateway’ to support and services” How can they reference subjective opinion as evidence without quantifying it?

The problem here is when a parent asks for help with their ASD child, they think that there must be some support and help available, but in actual fact, there is not and this is down to the Local Authority. Parents are at their whit’s end fighting everyone to get them to understand and they, as I did, naively think that someone can help, when the truth is, parents are on their own. This ‘gateway’ to support is a mystical one that does not exist, and services that are impossible to access with a child who has a High Functioning Autism Condition

I’m concerned about the content of the report, but the recommendations made actually frighten me. WCC state they will look for alternative reasons, and to use approaches and interventions for ASD, and this is a worry, as it appears that no lessons have been learnt since the experience we had, and instead the Authorities have taken a massive step backwards for all Invisible Disabilities, particularly High-Functioning ones including Autism.

The long term impact on undiagnosed children and adults is obvious to those of us that live with the condition, and although I feel very sad that this outcome will leave more high functioning autistic people at risk of other medical conditions as a result, such as increased anxiety and depression, the impact on their ‘apparent’ ability to cope in education and the fall-out of them not fulfilling their potential in to adulthood which will ultimately have its own cost implications to the NHS and Local Authorities, it is not this that concerns me most.

I’m massively worried about the impact of the decision to start looking to ‘courses’ as a resolution for the symptoms, as this will not work. They do not offer the support needed and they do not fix ASD symptoms, in fact in a case of Pathological Demand Avoidance these types of ‘approaches’ can create a very unhappy and unwell child as a result.

The main recommendation from the report is based totally on weeding out the cases that will not meet their own criteria and looking to place the blame at any door, other than that of the Autism Pathway. What about the cases who have genuine High Functioning, invisible disability that can only be extracted by an Expert Professional? There is no excuse to cherry pick who gets an assessment and who does not. These are children with individual needs. In what other condition, would it ever be acceptable to not diagnose? It is absolutely unacceptable to put one child’s disability over another, simply because it is too expensive to sustain the current processes in place.

Parents face a continuing struggle with the NHS to be listened to and believed as it is, leading to increasing referrals to Social Services. Child Protection interventions begin when a parent is accused, (wrongly) as I was, of Fabrication and Inducing Illness (previous Munchausen’s by Proxy).

We hear a lot of parents talk about long waiting times for Autism Assessments, ASD Diagnoses, and the battle to gain support. My experience is that in order to even access a fair assessment, a diagnosis, the educational and emotional support that should follow for children, parents are treated like perpetrators of some abuse or worse, treated like they don’t have the knowledge or ability to pick out ‘ordinary’ and ‘unusual’ behaviours in their own children. An ask for help for an undiagnosed child leads to judgements on parenting and worse. This is how important accessing an early, correct and expert diagnosis is in terms of the support available. It is not true that the support is offered on needs of the child, because those needs are put down to other aspects of behaviour, it is true however, that the support offered is a way of teasing out parental issues, using archaic attitudes and parenting strategies which in fact makes the whole assessment process unbearable for child and family.


Review Paperwork and meeting details can be found here:  http://worcestershire.moderngov.co.uk/ieListDocuments.aspx?CId=134&MId=2165&Ver=4Follow meFacebooktwitteryoutubeFacebooktwitteryoutube
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Redditch Advertiser coverage of Spoken Word Event

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The advertiser have covered the event here. http://Advertiser

Awareness, promote awareness.

DOWNLOAD THE FLYER HERE: Flyer VOICES 

Autism Spoken Word Event at the Artrix

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Autism Spoken Word Event at the Artrix

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Voices: Autism in Spokenword

Featuring Janine Booth, Tom Bowes aka ‘Autistic Genius’ and Bernadette Louise

An evening of poetry and spoken word including performances by those who are on and support people on the Autism Spectrum.

Performance Poet Janine Booth describes herself as “a Marxist, trade unionist, socialist-feminist, author, poet, speaker, tutor, former RMT Executive member, supporter of Workers’ Liberty, aspie, bi, Peterborough United fan.” She is has an established catalogue of work dealing with Autism and much more.

www.janinebooth.com

Tom Bowes is a public speaker, Autism advocate, writer and vlogger. He runs a Facebook page called Autistic Genius, where he creates videos explaining the different traits of Autism.

www.facebook.com/AutisticGenius1988/

 

Bernadette Louise is a Mother, Artist, Writer, Fighter. She describes herself as having “a fiery tongue” and writes an “honest sometimes brutal account of parenting and partnering the Autism Spectrum condition”. Bernadette has a history of making self-confessional artworks, and has been frequently supported by Arts Council England.

www.BernadetteLouise.com

Unallocated seating in the foyer

Monday 20th February 2017 at 8pm

£8 (£6)

http://www.artrix.co.uk/whats-on/theatre-dance/voices-autism-in-spoken-word

Also, at the Artrix is the 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’.
http://www.artrix.co.uk/whats-on/exhibitions/bernadette-louise-accused-an-autism-mother

 

 

 

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

Share this articleFacebooktwittermailFacebooktwittermailI 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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So is this an admission of wrongdoing? NHS reply

Share this articleFacebooktwittermailFacebooktwittermailSo this is just one of the comments in the recent NHS response. And yet they still insist in their letter that they are not and were not wrong to act in the way they did, and they continue parent blame throughout the report. More to come, once i’ve dealt directly with the imbeciles.

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Inept and displacement of blame continues through the heart of the ASD Assessments and Child Development Team in Worcestershire Health & Care Trust. Ha, Trust. Do not Trust them, their name is surely mis-advertising and misleading to us mere NHS punters, surely they should be done under the trades description act ;-)Follow meFacebooktwitteryoutubeFacebooktwitteryoutube
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