Posted in Brief updates

Where do we go from here?

The battles done and we kind of won, so we sound our victory cheer… where do we go from here?’🎶

If you recognise the above Lyrics then you are as much of a nerd as I am, but I though it was very apt to describe our current situation. If you don’t follow our journey on social media, then you won’t be aware that William’s final EHCP has arrived! After what I believe has been 44 weeks. 24 weeks over the legal deadline.

The EHCP specifically states that William will be attending a special school as soon as a suitable provision becomes available, it backs up what the case worker (the illusive Richard Day) told us over the phone which means they can not back out of it.
Although the lyric states the battle is done, the war isn’t over, and this was just a small part of our journey. There is still the fight for a school and ensuring it is the best setting possible for him and then once he is in a school ensuring they stick to the plan and that it adapts and changes as he needs it to.

That is just the education side of things, there are so many other area’s that require a fight, accessibility, mobility and many more. I feel like every battle is going to be uphill but right now I am relishing in this one. There were tears from myself, Williams dad and family members who had all been in the with us. Happy tears for a change.

At the height of the pandemic Gavin Williamson announced that there would be flexibility over timescales in relation to plans; I remember writing about it at the time and being assured by the Local Authority that this wouldn’t affect William… 🙄 I don’t think there is a big enough eye roll emoji to insert here. Is 24 weeks classing a flexible or absurd?

In 2019 Gavin announced they were conducting a SEND review which has as you can imagine been postponed as with everything else the authorities have been doing, my concern is that Gavin seems to want to abolish the EHCP claiming parents should be able to get their child what they need without one however this massively worries me. I know that more and more requests for EHCP’s are being declined but approved upon parents taking it to appeal. Not having an EHCP creates so many barriers and I worry if these are no longer going to be available then it won’t make it easier for children to access the education they need but would make it near on impossible.
I found it so hard to even get the request for the EHCP let alone going through the motions on ensuing it was done and watching our timeframe more than double. How can parents help their children without a set timescale and document to ensure the local authorities stick to it? Will it just be a verbal agreement between schools and parents? There would be no ramifications if it isn’t upheld? I’m frightened for those who don’t yet have one, or don’t know they need one. And for those of us that after blood sweat and lots of tears (and coffee and therapy) finally have one that may become null and void.

I guess time will only tell, much love M 😘

Posted in Autism In The News

Genevieve Hyde

Do you know this woman? If not let me introduce you…

Genevieve Hyde

This is Genevieve Hyde, she is the former head of education at Wargrave House School and Specialist College in Newton-Le-Willows.

I struggle when I think about the fact I will have to entrust William into the hands of a school for more than 6 hours a day, it genuinely gives me palpitations and strikes fear into my soul but when you make that inevitable decision of which school to entrust your child to, you pray it was the right one and that they have the utmost respect for you children and their needs. That they have nothing but the best intentions.

Genevieve did something that as a special needs parent I find unforgivable, she made fun of the children in her care. In fact, it’s unforgivable to make comments about any child but she was in a position of power and trust! I have had friends and family make comments about my child and can honestly say they have swiftly been put in their place or cut out completely… this is someone who should know much better than to be so cruel, someone who chose to work in that field, someone who should understand.

Genevieve created a WhatsApp group with members of her staff in which she not only made comments about other staff, but about pupils in her care. It was the another member of this group chat that reported her for her comments.

She also made comments referring to her pupils as ‘window licking’ my question here is that although one of her staff members reported her, did they comment in return to the messages? did they tell her it was inappropriate? or did they go along with her?

Can you imagine how the parents of this school feel knowing they placed their trust in a woman who blatantly abused it.

This woman was trusted with the care and education of children like William, children who, as the name of the school suggests require specialist care. In May 2019 she was suspended under an investigation of misconduct. She was later dismissed in which she unsuccessfully tried to appeal. Thank God! However, despite losing her job, she is still allowed to continue in the profession and seek employment within specialist education. How is this an appropriate punishment? In a few years and this isn’t in the papers, this woman may be in charge of another child’s education, I wouldn’t want it to be my child!

Were parents at her school even notified of this when it happened or have they read about it in the papers and now wondering if it was their child she was referring to?

The world can be a cruel and horrible place…

Much Love
M. xx

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Posted in Autism In The News

Olga Freeman

I want to talk about Olga Freeman, I’m not sure if some of you will have already heard about Olga as she has been in the papers over the months, after she committed an atrocious act and murdered her autistic son after her support was taken away during the pandemic. I do not want to discuss the murder, but I want to discuss her mental health during this pandemic and not just hers but all of ours.

I cannot understand how anyone can do something so heinous, but I can understand the feelings she may have had during this pandemic and I think any parent of a child with special needs can too, in fact any parent at all…

That overwhelming sense of slowly drowning; of not knowing how you could possibly keep your head above water but in many parents’ cases we know we must, so most of us learn how to swim no matter the waters.

Lockdown has been hard for many parents, but I speak from experience when I say that it has been exceptionally hard for those with special needs kids, support was completely stripped, nurseries and schools were closed, activities and respite were stopped, appointments postponed so many times they became a mere memory and people were restricted from seeing loved ones who act as a huge support network.

I am incredibly lucky that when I became a single parent back in October, the support came in strong from unexpected places. I was suddenly in need of a support bubble and it came in the shape of my neighbours who have massively stepped up for me in a way most would not have. It came in phone calls from friends just checking to see if we needed anything and were ok. It came in doorstep drop offs from family members.

Olga did not have that, what she did have were doctors agreeing that she needed more support but the local authority failing to provide it… She knew she was struggling and actively sought help in the month prior to killing her son. I speak for many parents now when I say that local authorities are notoriously slow at providing support, if any…

Olga suffered a severe mental breakdown which led her to take the life of her son. I suppose my point of this post is to implore you all to check on your neighbours, friends and family who may be struggling but hiding it well. I’m not saying that everyone is capable of such a horrendous act, but everyone is capable of reaching breaking point.

Posted in Autism In The News

Death by ignorance?

I have written previously about death by indifference in a previous post, check that out here but if you don’t want to read it in full here is a little summary.
It details the deaths of 6 people who had special needs and how failures in the care system surrounding vulnerable patients (particularly non verbal one) lead to their early deaths.

Today I want to talk about Betty Wattenbarger and Coco Rose Bradford, two very young girls with autism who sadly died after seeking medical treatment.

Coco was 6 years old was admitted to The Royal Cornwall Hospital in summer 2017 with stomach problems, It shouldn’t have had any effect on the treatment she received but Coco was autistic. She was vomiting, had bloody loose stools and couldn’t take in any fluids. A quick look on WebMD and it tells me that fluids are most definitely needed based on the symptoms, no matter the cause.

It also to me (no medical training at all) seems like common sense but this didn’t happen, she was sent home only to be brought back to hospital the following day despite the hospital staff telling her parents she was ok. The staff missed several opportunities over the course of 8 days to establish what was wrong with her and save little Coco’s life, but they didn’t.
After Coco died it was discovered she had an E-Coli infection and Haemolytic uremic syndrome, the doctors and staff on duty said they found Coco uncooperative and non-compliant when questioned about the little girl’s death. As a child I was terrified of hospitals, doctors, needles and would fight my mom if she tried to give me medicine or clean a wound (this is why I had a piece of glass stuck in my knee for over a year 😳) imagine being autistic and having those feeling plus a million more running around in your head without been able to tell anyone what is wrong. Just like most parents of autistic children Coco’s parents knew something was not right and spoke on her behalf imploring the hospital staff to help her but it fell on deaf ears. The NHS has admitted key failures in Coco’s care following a report.

Sadly Bettys story is very similar, she was 7 years old, she had autism and was nonverbal, in 2019 she was struck by a fever in which was severe enough for her parents to seek emergency medical treatment in which they were advised by a nurse practitioner that it was just the flu and sent home with pain relief. No testing was carried out despite her father displaying concerns about her breathing. Sadly, she died the following day. He dad described the moment she was gone as the light leaving is house.

Her family believe that had it not been for a misdiagnosis she would still be alive today, if they had seen a doctor she would be alive today and if she had been able to tell them how much pain she was in the she would have received the correct level of care and not have died. The Texas medical board have refused to confirm if they are carrying out an investigation.

I speak from experience that when your child cant tell you what is wrong it can be difficult but you learn to know your child like no other and the thought of those that are supposed to help them refuse to listen is terrifying. We are naturally protective over our children but what if no one listens? What power do we have to get those that should be helping to listen to us? It is a terrifying thought. These deaths are becoming more and more frequent. Is it death by indifference? Or death by ignorance? How can a 6-year-old not be treated because she was uncooperative? What 6-year-old on this planet is happy to be poked and prodded by strangers when poorly?

We need to keep talking about Autism. We need to educate teachers, doctors, and nurses. We need to normalize it. It is not a taboo subject, 1 in every 100 people in the UK is diagnosed as autistic. It is not uncommon. Why aren’t we teaching about it in schools?

I work in an office (pre Covid) and often have to have to catch up on new systems and safety procedures so why aren’t medical professionals being made to educate themselves on developments in diagnosis’?

Posted in Autism In The News, EHCP Process

Another void in the system – Not special needs enough?

One of my biggest fears is about William and getting into the right school for him and applications are getting closer and closer so it is a big source of stress during an already stressful time for us.

I read an article recently about a little local boy who was deemed ‘not special needs enough’ for a specialised school and ‘too special needs’ for a mainstream schools who can not accommodate his SEN requirements, leaving him without a place.

The little boy in question in question has a mental age not much older than Williams, is non verbal, is still in nappies and is currently awaiting his autism assessment. On paper a very similar situation to Williams, so as you can imagine this read was my equivalent of reading a Stephen King or Dean Koontz book before bed. 😱

I was advised to reach out to mainstream schools in our area to see what SEN provisions they have should William not be allocated a place within a special school, I have made no secret about the fact there is a specific special school I feel will suit his needs but if that is not possible I would happily begrudgingly accept an alternative but I know that a mainstream school would not be able to meet his needs in the long run, I have reached out to eight different schools in my area, only one which would be easy to get to but I reached out to them all.
* One have said they can not accommodate him despite having a responsibility to adjust their settings to do so.
* One have stated they need his EHCP before commenting, unfortunately due to covid the process of this was delayed and we may not have this in time for applications although I am aware that it is 90 pages long 📜
* One wanted to invite me in for a look around and a conversation but did state after early years they aren’t big enough to accommodate his needs.
* One said they would call me and haven’t
* The remaining four have yet to respond despite a secondary email.

Before I was a single parent, myself and William’s dad had discussed how we don’t think a mainstream school would be a good fit for William and the possibility of keeping him at home until we could secure a place which would meet all his needs however now I am not sure how I would be able to try and home school him and work all whilst fighting for his right to education in a safe and secure environment.
It never crossed my mind that I would need a place at a mainstream school and now I am worried that I may not get one which is terrifying.

All signs and indications point to the fact William has an exceptionally good chance at obtaining a place at his school of choice or at least an suitable alternative but what if he doesn’t? The schools I am reaching out to aren’t exactly helping me make a decision but what if that decision is taken out of my hands? What if no school can help him?

Its a difficult thought to process especially after reading the article (Click here to read it), as with anything about special needs it is a waiting game, waiting for EHCP, waiting for an assessment but as each day passes mainstream allocations get closer and it feels so overwhelming. I guess waiting is the only thing I can do until our next meeting in December with the councils SEN team.

Hulls SEND strategy is dated from 2016 to 2020 and it starts with their vision
Our vision for children with special educational
needs and disabilities is the same as for all children
and young people – that they achieve well in their
early years, at school and in college, and lead
happy and fulfilled lives
.
They talk about their responsibility to commission and provide services for children but there are so many cases where this hasn’t happened that I feel like I am reading a piece of fiction but again only time will tell…

Much love, M. x 😘