Accused: an Autism Mother images

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Polling Day, an apology.

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To my neighbours who couldn’t vote today, I’m sorry. 

I had every intention of voting for myself today. My partner had planned on marking an x in the box, next to my name. 

But alas, things often don’t go to plan when there is a disability involved. It’s multi layered and of little interest to most as to why, but for me it highlights the issues that led me to not be on the ballot paper today. 

Firstly, the paperwork. Paperwork is something I’m very good at, but in some circumstances more than others it takes extra planning. My disability does inhibit my ability to carry out some tasks in a timely manner, due to motivation difficulties. Added demands can really hinder this and further delay me being in a position to finish a task. So paperwork gets completed, when nose to nose against a deadline, most of the time. This was the first hurdle in my journey to the District Council. 

An added stressor of this was that, when I’m on a deadline, it doesn’t fit in with other people’s time, they’re own availability. So when signatures are required in a hurry because i got a date wrong, they are not necessarily available. Why did i get a date wrong? Because I have poor executive function when under pressure. Why didn’t i get the signatures sooner? Confidence? Anxiety? Demand avoidance? I’m not sure, but whatever it was I couldn’t manage to get enough signatures for District Council nominations in time. But i did get them for Parish. 

The next leg of my journey involves the physical act of traveling to Pershore, with my papers, having squeased in a visit to get the last signature after school had finished, 

The deadline is 4pm. Our 6 year old finishes at 3:15, we have one car and have to stick to our routine, so, between 3:15 and 4pm I’m getting last signature from a house i know not where it is or what I’m looking for, manage it better than hoped, and once signed, we hightail it across District to Pershore enroute to Council offices. 

That’s done, we’re on our way. 

The last leg, 

Well, what can i say about the Pershore traffic? We were making good time, everything was fine. But then, the new build estate traffic lights happened. 

We moved less than a few meters in 20 minutes. 

I should have walked, but unbeknownst to me, it was worse the further down the road we got, not better and, to get out the car and run a few miles on a busy road, in a highly populated area with my self doubt and absolute frustration, was unlikely. I have a really difficult time with fatigue and doing all of that under the circumstances i was faced with, it just didn’t occur to me in the moment, that i should have just run. I sat, heart-pounding in the car stuck behind a queue of immovable vehicles, listening to my son ask why were we not moving? 

Time was ticking on, 

I phoned to see how strict they were with deadline, it was strict and it was tight. 

I eventually got there at 4:10 and was too late. I even phoned up from reception with the ruffled paperwork in hand, and pleaded that on the grounds of disability reasonable adjustments that they considered taking my application, I couldn’t help the traffic , and that I couldn’t get there any sooner because of my condition. I was told that i had had 8 days. That might be true, but my disability takes longer than that sometimes. 

I was so disappointed, i was silently feeling sick all the way home, occasionally joining in a conversation with the boy, but it was just vacant chatter, a wash of noise as I couldn’t process that we had been so close, and what this meant for the next four years. 

I had let people down. 

Lots of people. All of those that need a labour representative. People that needed a voice. I let you down. 

The realisation really set in when I received the email from district saying our area didn’t have to vote. That the two areas i was potentially running in, had not been contested, and why? Because it was meant to be me contesting one of those seats, and I didn’t. Because of traffic!! 

That’s it for Harvington and that’s it for Inkberrow, for 4 whole years. 

That is a long time. 

It’s polling day today and i feel pretty low. I enjoy going to vote. I always did in my last home. I like playing my role and doing my bit, but this time, in my new village it would have been with a new route to the polling station, a new smell to the hall, a new name to put an x by, and a new purpose. That purpose is the reason i put myself out there, to represent labour, offer an alternative and to change things that matter to people. 

I’m sorry about that. 

I’ve put myself forward as Parish Councillor to be coopted in, we’ll see how that goes, and if anyone else applies. 

But as i say 4 years is a very long time to be stuck with the same people in charge of us, and well actually it’ll have been 8 years at least by the next local election. 

In my old town, we had a local election 3 out every four years, I didn’t realise the impact of not getting my shit together sooner. Until it was too late i suppose. 

But..the light at the end of this tunnel is that in two years, we have County Council elections and i will be ready. That is a job i can do. It’s a job that Worcestershire needs someone like me to do. 

It’s County that pull the strings on the things that impact our Children, Education our SEND Community, and it’s County who need to hold the District councils more accountable for bad local policies. I’m happy to take on that role. And by then, in another two years time, I’ll have both boys in school, will have unpacked all our moving boxes, no more home renovations to complete, no more paperwork to fill in for autism assessments, no more outstanding complaints on behalf of the children, they will be sorted with support they require, we will have been settled in the new house, the community longer than a few months, there will be a routine and I’ll have breathing space. There will be less to occupy my mind, battle plans complete, capacity available. 

That’ll be in two years. 

That’ll be me going full throttle in to winning County Elections. Because we still need representation, real people still need a voice.

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EHCP (Education, Health & Care Plans) Case studies required WORCESTERSHIRE

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Hello to those of you in WORCESTERSHIRE…

Please can I have your experiences of EHCPs?

It is a short survey (only 10 questions), can be anonymous, and filled out multiple times allowing for each journey/child.

It is for Worcestershire SEND Parent/Carers within WCC, only though i’m afraid 🙂


Create your own user feedback survey

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

Share this articleFacebooktwittermailFacebooktwittermailWell 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.Follow meFacebooktwitteryoutubeFacebooktwitteryoutube
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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. 


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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Follow-up from my Response to WWC Overview & Scrutiny Review

Share this articleFacebooktwittermailFacebooktwittermailI’m told that tomorrow, Worcester News are publishing an Article relating to my original review on the Overview and Scrutiny Panel that i previously posted (Here) – The comments made to the Paper were made a while ago now, in a typically un-timley manner, since I that time i have been fortunate to gain some more information…In light of this, i’m adding my follow-up that i wrote after a good discussion about the intentions behind the WCC Outcomes. I’ll go further in to it, and i really hope to work with the Worc’s Health and Care Trust directly to smooth out some of these issues, however, in the meantime, here are my (as yet unedited) ramblings.

x x x x x x x x

On Friday I was lucky enough to meet with the Children’s Clinical Services Manager, who is the lead of the Umbrella Pathway, I say lucky as it was nice to be able to get a meeting with someone who has influence over the decisions that impact on us every day within Worcestershire. It shouldn’t be down to luck, however, my professional position blurred things slightly and I think, initially, it felt to my colleague as more of an ambush. That was of course not my intention at all, and perhaps due to my own formal manner (an ASD trait of mine), my contact came across as one thing, rather than another. However, ambush or not, the intent was true and as a Parent who is impacted by decisions made and/or signed off by the LD Lead for Children’s Services, it was an opportunity that I grabbed fully.

The one big issue that came out of the meeting is that of funding, of course it’s funding.

The CCG are telling the Trust what they need to do and where to make savings. This is fine, as the CCG hold the pot of money, but how much push-back is given when this decision is not the best one for the Trust or it’s Service Users? If the Trust go along blindly without due consideration for those they serve in a medical and care capacity, then how can we parents know that the children are safe in their hands? When something comes down to funding, corners are eventually cut. In this case, the WCC have put a case forward in their Overview and Scrutiny Panel Report that highlights to me, where these cuts are being put in, without an idea of the future and ongoing cost implications of trying to change the process for the worse here, at this early stage of accessing an assessment.

I’d like to see the figures, it seems sensible that the figures to back up the changes to an existing process are shared to enable transparency.

The figures I’m interested in is that of the existing ‘pot of money’ and how it is divvied up along the ‘pathway’. I was interested to learn and surprised actually, that there is no one pot of money for the umbrella pathway. It is not held specifically for the Autism Process in either the Trust Mental Health Services, or Learning Disability services. It is allocated to each individual team that has involvement and inputs in to the assessment process. This doesn’t make any sense to me, and it is information that needs exploring further.

In terms of finances and value for money, it also seems sensible that we get an overview of the total cost of a child going through the current pathway, who is paid what, when?

I would personally like to see this, so I can assess whether the current pathway is good value for money, and from a parent’s perspective, pull out the unnecessary elements of the pathway and make way for the parts that need more emphasis placing on them.

It is my opinion, and until I have actual costs I can only speculate, that the current process of following the NHS Pathway is far more ineffective and less financially viable than a parent who manages to go down the Private Assessment route. As a ballpark figure, a Private Assessment might cost a parent £2000 – £3000 to obtain a thorough assessment by an Expert Paediatrician, Clinical Psychologist and/or Speech and Language Therapist. These are experts in their field as many have reached a senior level in the NHS and left the public sector to pursue Private Practice and provide a more focussed Neurodevelopmental service. In that Assessment, everything that is considered over months and years by the NHS pathway, is also considered but in a more appropriate setting, nothing is left out, there are no short cuts in the Assessment process Private or Public. And yet, the time taken is better for the family, it is accurate as carried out by Neurodevelopmental specialists and the relevant issues are measured accordingly, allowing the Specialists to join the dots and lot sooner and make a more accurate opinion, unlike the current fragmented NHS process carried out by ‘jack and Jill’s of all trades’ in terms of Children’s health where problems occur in several professional holding subjective opinions and the facts get lost amongst the ‘dot to dot’. And how much does each one of these appointments cost to carry out (time, admin, paperwork, professional, room hire, rates etc)? I wonder if the whole process was totted up, how much would that be? And then add in the extra pressures that can arise from not having an assessment at all or making incorrect allegations of parenting issues etc, then these costs (again room hire, professionals time, cost of running a triple p course, contacting social services, implementing safeguarding staff?) and then consider the cost absorbed by schools and nurseries (staff, meetings, time out of classroom) and EHCP tribunals and all that goes in to these, and then there is picking up the tab on mental health treatment for those suffering additional anxiety, depression, PTSD and medicating these symptoms? Would all of this really be cheaper than listening and believing the parents with regards to the severity of the ASD symptoms; cheaper than the voice of a second opinion by an expert Specialist, and offering the best diagnostic assessment possible in the very first place?

Secondly, I feel it is important to note that I felt more comforted by the information I gained about the report that I thought I would. Something that is apparent is the language in the report and that the emphasis of the report is based on parenting. According to the Service Lead, the push for support is coming from the Schools and not the parents; this surprised me, as it isn’t mentioned.

Through all of the interventions and graduated responses mentioned in the report, they do not focus on the additional support in schools, it does not focus on the Teachers pushing for additional funding to sustain the classroom support that is required when a child has a (potential) Autism condition, and it does focus on Parenting issues, behaviour difficulties, and an array of other diagnostic labels, than actually once joined together could quite easily be a case of ASD PDA.

If the focus is not on a diagnosis, or a label, then why go ahead and look for other labels – as if the Autism one is off-limits?

My concerns remain, as the new focus on alleviating the front door pressure of a struggling system is not going to resolve the fact that the children still need an expert assessment – of which I am not convinced they get through the current pathway. The lack of understanding about accessing support is rife, and the wider public and professionals need to understand the consequences of NOT diagnosing an Autism Condition. The fall-out is emotional to family, and ultimately financial to the Public services, when incorrect diagnoses are made or unmade, and the families end up fighting the system through courts, be it child protection cases, Education Tribunals, follow-up health care for traumatised youngsters and families who have been impacted negatively by their experiences of the route that took them to the courts in the first place.

We know that the Local Authority have limited budgets, yet the schools are asking for help which isn’t being implemented and this concern isn’t being shared amongst parents. The money spent by the Local Authority fighting back at Parents, could be better spent in giving that support required. And how do we know someone needs support? We assess, diagnose and believe parents.

In PMQs on Weds 22nd Feb, Theresa May PM answered a question surrounding Learning Disabilities and she said that the Government “will be introducing Education, Health and Care Plans”, and my question to her is, why “introducing” and not acknowledge that they actually ALREADY exist and are like fairy dust to obtain? And if the Government are taking an active role in pushing the EHCPs, how do they expect to provide them to children who have not had an assessment?

This topic of ‘assessment versus diagnosis versus need’ is too vague for parents, teachers and children who are growing to adults as we speak.

If the schools need support, they should get it, if the parents need support they should get it, early intervention is key – the Trust gets that right at least, however, their perception of what early intervention is, what form it takes, and who can access it, is drastically off the mark.Follow meFacebooktwitteryoutubeFacebooktwitteryoutube
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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: meFacebooktwitteryoutubeFacebooktwitteryoutube
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