I have been sat on something for quite some time now but have been cautious about making it public knowledge until the right time, but I think now is that time, time to let the proverbial cat out of the bag 🐈
I have been a little Jekyll and Hyde in posts about mainstream schools, those that have been around since the beginning; since before ‘Our journey onto the Spectrum’ was a thing and it was just simply our life, will remember how adamant I was that William was would get the education he needed, the education he deserves. Somewhere over the last year, what was right for William got turned around and it because what was right for the Local Authority.
Pressure was put upon me to name mainstream schools, with phrases such as ‘by law you have to name mainstream schools for allocations…’ I can categorically state this is absolute bullshit! But when the forms came through, I felt forced to do so, I felt manipulated and bullied into making a decision that I new deep down was not correct for my child.
The crushing disappointment that came on February 15th when William was left of the consideration list for special school places almost tipped me over the edge mentally and knocked the little bit of fight out of me that I had left. I remember saying to Debs that I just couldn’t fight anymore, and she told me I was only just starting… she is usually right always right but I just felt so deflated that I wasn’t ready to admit that to myself. If we think back to that time; I kind of had a lot of other things going on in my personal life. Breakdown of marriage, adjusting to being on my own, juggling my finances and not being able to see my family due to covid. I think I was at a stage in which if the Local Authority told me to have William educated in the local dump, that I would have agreed.
Williams EHCP draft was completed on 29th April, but I didn’t get it until 6th May, I filled out my parental response form naming the mainstream school I had chosen and in which myself, the nursery and the Local Authority Senco had all liaised with shortly before. The head teacher couldn’t confirm they could meet Williams needs without the EHCP but I was expected to name them for the final copy without this confirmation… I felt I had no choice, so I named them and was ready to post it and I am so grateful I didn’t do it straight away.
On the 7th May, I got my fight back with help from the most amazing woman, a woman who has never stopped fighting for what is right for her child. A woman who helped me kick myself up the arse and point me in the right directions about my rights. K❤ If it wasn’t for her, I wouldn’t have sought legal advice, which I have been given free of charge thanks to the specialists she pointed my in the direction to… I have since been awarded legal aid and its not even something I would have looked into if not for her. I tip-exed out my school of choice and wrote that I specifically wanted a specialist school and named one in which I feel and have always felt would be appropriate for the education of my child, one in which can without a doubt give my child the education he needs and deserves. I sealed it and sent it straight away. ✉ Had it have been 24 hours later I would have made the biggest mistake of my life (and believe me, I have made a few… divorce impeding remember 🙄
I think friendship and support comes from the most random and unlikely places but when your children have special needs, you just see each other and think ‘I’ve got you’ There are so many people in my life that have supported us in this journey purely because they understand and have been there themselves.
The Local Authority doesn’t tell you what you need or are entitled to, the don’t point you in the right direction for your children, they point you in the direction which is the best for them. It’s the other parents that do that, the parents that fought a little harder than we did, the parents who scraped and struggled for help and answers. They then pass that down to us.
The NHS isn’t much better, purely because the communication between departments is virtually non-existent when it come to special needs kids so not only are you fighting one entity such as the local authority but also the NHS and its procedures and policies. I am a huge fan of the NHS and the Queen has rightly awarded them with the George Cross, which is the highest award bestowed by the British government “for acts of the greatest heroism or for most conspicuous courage in circumstance of extreme danger” and the NHS truly deserve it due to all they have done to save lives not only during the Covid-19 pandemic but for the last 73 years.
I saw this a while ago and thought it summed everything up perfectly…
Other parents came into my hole to help me, and I will happily climb into the next person’s hole because that is how this works.
Anyway, I digressed a little from the point, should the Local Authority fail to provide William with an acceptable school setting which will meet all his needs, baring in mind this has to be done by the time the send me the final copy of the EHCP, then I am fully ready to take them to a tribunal. It looks like it may be a big fight 🥊 but I’m ready this time.
Let’s end this post on something amazing. This is something I never thought I would be able to tell people, William spoke… and in true William fashion; just like all his other firsts, it was at Big Nannas 🥰
He said ‘Nanna’ in context, six times!!! Six whole times!!! and the following day did it again when going passed her street. These may be complete flukes and I don’t want to build massive hopes upon it, but it is so much more than I ever expected. I mean Mama would have been even better but beggars can’t be choosers 🤣
I think terrified is the best way to describe how I am feeling about William transitioning into ab school setting from his nursery. The fear keeps me awake at night as I toss and turn thinking about how he will handle a new environment and different levels of support. When I think that his days at his amazing nursery are numbered it genuinely makes my sad.
This was William just over 2 years ago on his first day at nursery, he looks so young and baby faced. He loved it whilst I sat at home and cried. I didn’t think anyone could look after my child as well as I could but I was wrong… Over the last 2 years they have helped William and myself in more ways that I could have ever anticipated, they helped me understand some of his educational needs and pushed us through the right channels for support, funding and diagnosis. Thinking that his last days are slowly coming upon us brings tears to my eye, not a single tear or quiet tears but messy heartbroken sobs. I know it is almost time for him to continue on his educational journey but i’m not quite ready to say goodbye to them 😭😭😭
Today was part one of the transition meetings to get William into the right school with the right support. Unfortunately we still haven’t received his draft EHCP however we are aware that he has been banded as intensive for the level of support he needs which is the top level. Below are the definition and school needs for children branded due to Speech, Language and Communication difficulties as Intensive or severe provided by Hull Local Offer. William easily fits into the ‘Intensive’ category however after discussing with his SENCO; Lisa, he would standardly have been placed in ‘severe’ had he have been going to a specialised school as his level of support would have been less within that environment.
Very severe expressive and/or receptive language difficulties of a specific nature, which are significantly impacting on progress and social, emotional, and behavioural development. Child/young person of broadly average ability. or child/young person with a very severe communication disorder, which is significantly impacting on progress and social, emotional and behavioural development. or child/young person’s ability to receive communication is severely limited due to a language disorder or a profound difficulty in interpersonal interaction. Child/young person may have emerging mental health difficulties and/or experience a high level of anxiety in most school situations.
Intensive programmes to develop understanding of language, expressive language, speech intelligibility and/or social communication skills. Intensive programmes to help the child/young person develop alternative or augmentative means of communication to a level commensurate with level of ability. Differentiated programmes of study to facilitate interaction with the curriculum either by oral, signing, symbol or written systems. Programmes of support to enable the child/young person to become competent users of communication aids / technology.
Profound speech, language and communication needs as a result of which a child at school entry age is only likely to function below the 12-month level in relation to these skills. and child/young person uses primitive gestures, a few signs/symbols and/or has almost no spoken language. and child/young person is unable to form words or make adequate use of augmentative systems of communication. and child/young person has severe limitations in the expression of intentional communication. or child/young person has significant physical difficulties, with less cognitive impairment, which require voice output communication aids. The child/young person may have an accumulation of layered needs, which could include mental health, relationships, behavioural, physical, medical, sensory, communication & cognitive needs.
Child/young person needs very early (infant) developmental programmes in relation to language/communication. Child/young person requires intensive training to acquire the limited use of means of alternative communication systems (e.g., signs/symbols systems). Child/young person requires intensive programmes to develop pre-lingual articulatory skills (i.e., formation of sounds in words). Child/young person needs programmes of work which recognises their high level of dependency in relation to language and communication. Intensive programmes of support to enable the child/young person to become competent users of communication aids / technology.
The guest stars in todays transition meeting * Lisa – SENCO * Jenny – Specialised school representative * Zara – Williams 1:1 support from nursery * Chris – Head of chosen mainstream school * Me – Mom, stress head, emotional wreck etc
For those who has tuned in to my blog before will notice Val isn’t listed as Williams 1:1 support, sadly Val decided to take partial retirement which means she no longer works Williams days. This did make me very sad as Val is amazing with William (Please feel free to remember when I pitched a fit because he left Linda to go to Val 🤣 I soon ate my words about that one) however William loves Zara and she has been in the sunshine room with him all along so i am quite happy with the change and happy for val to have some well deserved rest.
I got to meet the head of our chosen mainstream school today and she seems very similar to the head teacher who was in place when I attentended in the 90’s. She asked me to tell her about William, nothing specific but my view on what he is like as a child. I got a little emotional explaining how loving he is in his own ways but it was nice to be asked, not about his development or what he can and cant do but about how he is as my son.
Our chosen mainstream has two classes for Williams age group with each having 30 children, he is currently in a setting of only 8 kids so the transition may be a big shock for him, the plan is currently to aim to start this by the autumn term which is October/November rather than the standard September term. It will be easier for William to adapt to his new setting if he is eased into it slowly, starting out with shorter days or weeks which are to be agreed once his EHCP is in place. When this finally does come through I can name our chosen school with the view of a specialised setting in the future (ideally the following year🙏🏻) On top of the EHCP naming I am also following the standardised appeal process to cover all bases to ensure we don’t have another crushing disappointment like we did when it came to specialised school allocations but i’m not holding my breath. Any parent of a child with special needs will tell you how fucked up the system is and how you get used to being let down by a system that is supposed to ensure your child has the best possible care.
As always I will keep you posted on what is to come and stay tuned for a catch up on other things that have happened within the last few months 😊
So the first episode throws you straight in to everyday life for the Hughes family, Joe’s behaviours, the ways in which his parents compensate for him and explain away any problematic issues (He just likes music…) and the way others have already started discussing him behind their backs.
When season 3 premiered I received deluge of texts and calls saying it was back on, I had to watch it, It’s about autism! Although I am really glad otherwise I wouldn’t have known to check it out. It did make my laugh at the time because Big Nan called as her friend called her to tell her to call me 🥴
I think i must be about 10 mins in and the confrontation between Alison and her family who think there is something wrong with Joe is so familiar that it has me sobbing 😭 The blinds are open so anyone passing may think I’m having a breakdown. Its not in any way easy to admit your child is different and its most definitely not easy to listen to someone else say it.
The cast is brilliant especially the 3 main family members; Mum, Alison. Dad, Paul and Joe. I’m slightly concerned that Christopher Eccleston is the Grandad and not the leading man… when the Hell did that happen? How old am I?🤔
Alison is doing exactly what I did, she is researching and dealing with Joe’s issues in secret like there is something to be ashamed of. Almost as if its dirty. Not the fact there is something wrong but the fact you believe it.
During Joe’s assessment with Dr. Waites Paul keeps jumping in and she threatens to make him wait outside. Dave was always so quick to jump in a explain away William’s issues and sugarcoat things. To be honest I think we both were but it took Dave longer to be honest about it.
The whole thing about birthday parties and invites is something that I worry about massively as William gets older. Will William want to be invited to parties or will it be us wanting him to be invited? It seems like the lack of invite for Joe is affecting Paul and Alison but Joe himself is oblivious.
Someone shared something on Facebook the other day about how hard it is to have people stare and judge when your little one is having a meltdown. It really does hurt when people do this. I totally understand that some people may not grasp what our child is doing and why but that doesn’t give them the right to pass judgement. It is hard to keep your chin up when your little one is trying to take other peoples food in a restaurant but then throws their own food behind their back or decides to lay on the floor or crawl instead of walking. We have actively avoided certain places. It sound ridiculous but planning to take William anywhere takes more preparation than a bloody wedding. 👰
It’s not going to go away if we call it something different.
Dr Waites. The A Word
Episode 2 jumps straight in showing Joe isolated at school, he seems perfectly happy but it hits Alison hard. William is really happy alone and we have had to learn how to play with him rather than teaching him how to play with us. However more times than not he chooses to be alone and will walk away from us to do his own thing. It took us a long time to get used to this as following him will upset him.
They push Joe into doing things he doesn’t want to do. To play in different ways, to play in a way in which is deemed ‘normal’ but this isn’t Joe’s normal and its uncomfortable to see.
Alison worries about him becoming labelled in school and how it will effect him. Paul argues that he already has a label with his autism diagnosis but she is having none of it. I guess this brings us back to one of our older posts about the benefits and pitfalls of having a diagnosis. Check it out here…
Its interesting to see how Joe’s diagnosis effects the rest of his family and to watch the conversations had behind closed doors, especially from Maurice as he doesn’t hold anything back and says it as it is. It does make me wonder what our families have said about William before we were so open about it. Did they say things like ‘he isn’t normal’? Did they grieve for the grandchild, nephew or cousin that they thought they would get? It is eye opening as in the beginning you are very much in a bubble, its just you and your child fighting for diagnosis and help but you forget the rest of family are still there with the same worries and feeling you have.
I really feel for Rebecca as the older child. She seems to be going through a pivotal part of her adolescence and no one seems to be noticing or caring. She is just left to her own devices and frankly a little neglected. She obviously cares for her brother a lot which is brilliant and they have an amazing bond, she just ‘gets him’ but it also beautifully highlights both the disadvantages and advantages of having other children. Check out our post about it here…
Watching Joe have a meltdown because he can’t get what he wants is an all too familiar situation. Joe is very vocal about wanting his music and shouts and breaks things. Whereas William will lash out at me or himself to vent his frustration. Before we could admit anything was wrong I used to think it was a way of him manipulating us into getting what he wants, although we now understand that it’s more like what William needs rather than wants. Needs to feel safe and comfortable. Whether it is a biscuit or BabyTV or even for us to press Duggee’s musical arm 5 million times in a row 🤯
Shame (insert naked Cersei Lannister here)… its something we all feel no matter how old our child is when autism is first addressed or even whispered about. Paul hit the nail on the head when he is telling Alison she is ashamed of him for having it, ashamed of them for not picking it up sooner and ashamed for feeling ashamed in the first place.
Episode 3 starts with the first meeting with a speech and language therapist… It feels a little unrealistic as it happened so quickly. There are no wait lists in the lake district? She came from Manchester so there must be no wait lists there either… Think we need to relocate 🤔
Maggie, their SALT is nothing like ours. Its was a frightening experience but that was all in our heads. I’m not a massive fan of people I don’t know coming into our house. I tend to get really anxious and end up snapping at Dave every time. our SALT was lovely, her name is Sally and she really put me at ease and William enjoyed interacting with her. Maggie is very straight talking and blunt and although it makes me like her from a viewing point of view, I can not imagine she would have gone down so well had she been the one to turn up at our house. I suppose all professionals have their own approach and use it to determine how to help their patients.
Alison is desperately trying to communicate with Joe and even tries to engage him in play. She is desperately trying to bribe him to do things with her, it feels like she wants to show Maggie that this isn’t her fault. In a look at me sort of way. I feel her pain. I would love William to sit with me and read books without eating them or play with cars on the floor in the conventional way but that’s not how he plays. He takes comfort in lining his toys up and moving them from place to place which is a solitary activity and if I get involved he gets upset.
Another thing I find super unrealistic is the fact Maggie spends so much time at their house on first visit and the fact she is coming back the following day. Is she privately paid? If that is the case why didn’t Alison recognise Maggie’s name? We waited Months and months for a SALT visit and months after that we have still only had the one which lasted about an hour.
More prime examples of Rebecca being brushed aside and forgotten. She is trying to get her parents to show an interest in her school play and they immediately turn it into another conversation about her brother. Every time she tries to talk they ignore her.
It is something we are very aware that we already do, our world revolves around William, making sure William is getting the adequate support is our main focus and it is one of biggest talking points. Why shouldn’t we tell people what’s going on, his achievements or even how hard it is? But this shouldn’t been done at the detriment of other siblings. This is why having another child worries us so much. The unfairness of it all. How could we go from giving William 100% of our time and energy to splitting it? could it be split equally? Should it be split equally?
Alison missed Rebecca’s play, she missed it and it was so important to her. All because she wanted to bully Maggie into seeing Joe. To top things off they end up arguing about Joe and don’t even realise that Rebecca has gone 😢 I can almost smell the teen pregnancy story line in the works.
I must say the soundtrack is absolutely belting 🎧
Episode 4 starts by showing how much strain Paul is under and how Alison is pushing all her energy into Joe and getting him help. She has actively volunteered for the school in order to gain more insight into Joe’s behaviour with other kids and it’s difficult to watch. It made me feel uncomfortable, she is there to supposedly help the other children read but is focusing on spying on her own child the entire time. However I don’t think I should be surprised she is neglecting other peoples kids when she ignores her own daughter all the time.
The Fever Effect, A fever usually makes you less alert, tired, and ratty however in some children with autism, a fever makes them ‘better’, more social, alert, even talkative. It has been described as providing a glimpse into what your child might be like without autism.The hope in Alison’s voice as she tell Paul that Joe is ‘turning a corner’ after he has been poorly is absolutely heartbreaking. You can see it in Paul’s face as they embrace that he knows it’s not true. And then the next day Alison describes him as being ‘back to abnormal’ 😢
She said she felt like she could see the real Joe underneath all his autism. 🤔 Joe is Joe. Having autism is part of who Joe is, it’s a pivotal part of Joe’s make up the same way it is William’s. Those moments in which he looks at me and I mean really looks are so special and I wouldn’t trade those for the world. even the times he can stare into space and be in his own world and then just giggle at whatever is in his head…. granted late at night this creeps me out and I often refer to him as a psychopath 🤪
Oh god Rebecca hit the nail on the head suggesting Alison’s manifesto for school governor. ‘All children matter but not as much as Joe’ ouch! Shots fired! 🔫🔫🔫
Episode 5 shows how the loss of a person can massively effect not only someone with autism but their family too. It beautifully displays the slow build up of Joe’s emotions and how he struggles to release them. He loves Maya in his own way and the fact that she has been taken away from him takes it’s time to sink in fully and its heartbreaking to see. He begins by withdrawing slightly and then slowly goes into full blown meltdown. Its beautifully handled by actor Max Vento.
William’s main worker at nursery was originally a woman called Linda, he loved Linda so much and couldn’t wait to be with her. He didn’t bother with other children but could happily spend all his time with her. Linda was lovely and motherly not only to William but to us too, she just had a way about her that immediately put you at ease. I knew our little boy was safe with her. BUT William couldn’t stay with Linda as he needed someone who was trained in children with SEN to help him develop. In came Val… she specialised in SEN. She was going to be William’s key worker meaning he couldn’t spend his time with Linda. It was OK at first but then William started actively trying to find Linda at nursery, giving Val the slip. When this didn’t work he stopped wanting to go to nursery at all. 😢 Do you know how we fixed it? We didn’t. It was hard and difficult but he needed Val. He needed her to support him properly in his education but he needed Linda for comfort and we had to chose which was most important and that had to be his education.
Paul’s and Alison’s discussion about having another child perfectly represent in equal measures our own thoughts on the subject. They argue about it as two sides of the fence but with us we just sit in the middle both agreeing with the reason for and against but commit either way. One day it’s a 100% not a chance in Hell and the next we are a little broody. 🤷♀️
Episode 6, the series finale. It kicks off at the launch of their family pub and Joe is struggling. It’s hard for him to be around so many people in a new environment. It’s bloody hard for me to be around so many people in a new environment and I don’t have autism. Alison is desperate for Joe to stay as he is part of their family but Paul is quite happy for him to be left out and removed from the situation which feels as if it’s done to save embarrassment.
Joe goes missing whilst with his grandad. Paul and Alison are speaking to a search party and they’ve just admitted to everyone that Joe is autistic for the first time. Alison describing the fact he may not know he is lost or in even in danger has really struck a chord. One of my biggest worries about William’s future is because he has no perception of danger. I’m sure I have said it before but he would walk off a cliff if it was to get to biscuit.
The suspicion that falls to Ralph is awful. Alison immediate pegs it for what it is and that it’s because he has Down syndrome. Just this small conversation shows how much Alison is growing in her acceptance of disabilities but then she goes round to their house and confronts Louise and Ralph anyway 😕. She shows these signs of growth but then disappoints as usual. The theme of prejudice runs strong in this series finale especially how bad it can be within such a small community.
Overall season one was brilliant. I’m not going to lie, it wasn’t an easy watch and some parts have been like re-watching conversations and feelings Dave and I have had over the past two years. The stress placed upon Alison and Paul’s relationship. The lack of communication. Its things we have all gone through as we come to terms with as Paul puts it; our grief over the children we could have had.
Its is definitely a series I would recommend to anyone who has an autistic child within their lives as it gives an accurate insight into not only what the child goes through but their families too.
I look forward to starting season two and hope it is as good as the first 😊
I recently read an article detailing the fact that a doctors surgery in Somerset sent a letter to Voyage Care, a facility in which supports adults with Autism and other learning disabilities.
The letter stated that the adults in their care should all have a DNR agreement in place in light of the current Covid-19 pandemic. In case you don’t know what DNR stands for it means do not resuscitate which basically means that if your heart stops or you can not breathe then medical staff will not issue CPR. No chest compressions. No mouth to mouth. No respirators. No defribrillation.
The ethics of asking anyone to sign or agree to a DNR is shaky at the best of times.
This letter was sent without any consultation with the families of the adults in question. Having any form of learning disability is never a reason to decide not to help someone to survive!
The British medical association states that a blanket DNR targeting one group is completely unethical and unacceptable. But then that raises the question of who authorised this letter to be sent in the first place! There is a huge stigma around those with learning difficulties including Autism as many people do not fully understand. We as a family are still only dipping our toes into the waters of understanding.
I simply can not understand how anyone would think it was ok to send such a letter! Can you imagine either been that ignorant or prejudice that you decide a whole group of people don’t deserve to live? Look at the people who pump themselves full of drugs and alcohol… they deserve transplants and a second chance at life but my boy when he is older would not?
Remember Emma, Mark, Martin, Ted, Tom and Warren? If not scroll back up and take a second look…
In 2007 Mencap published an article called ‘Death by indiffernce’ that highlights the fact there is an institutional discrimination within the NHS which leads to those with learning difficulties getting a substandard quality of care or in some cases none at all.
Emma. July 2004. 26 years old. Emma had a learning disability, this mean she often exhibited challenging behaviour and had difficulty communicating. Emma had Lymphoma B1 cancer. Her survival chance was 50:50. Her treatment was delayed on multiple occasions as she could not consent to it. No pain relief was given. The high court had to get involved and when treatment finally started palliative care was the only course to take.
Mark. August 2003. 30 years old. Mark had a severe learning difficulty and very little speech but he had his own way of communicating with his family. Mark broke his femur and had an operation which resulted in him losing a lot of blood (40% of it to be precise). The staff also failed to give him his epilepsy medication. He was discharged despite still incurrring pain and had to be re-admitted on multiple occasions. It took 3 days for the pain team at the hospital to see him. He died less than 9 weeks after his operation. The medical staff involved did not believe Mark’s family when they told them something was terribly wrong with him.
Martin. December 2005. 43 years old. Martin had a learning disability and no speech. Martin suffered a stroke and was sent to hospital were he contracted pneumonia. The stroke effected his ability to swallow so he could not take in food or water orally. He was placed on a drip which he didn’t handle well and often pulled out. On his second week in hospital it was established that the drip wasn’t providing him with the nutrients he needed. A speech and language therapist visited him repeatedly and advised he should be nil by mouth and other methods of feeding should be introduced. He was in hospital 3 weeks before they decided to intervene and by then it was too late. His veins had collapsed and a PEG feeding tube needed to be inserted but he was too unwell to withstand the operation. Martin went 26 days without food and nutrients before he died. The hospitals policy was to introduce alternative methods of feeding after seven days but they failed to adhere to it costing him his life.
Ted. May 2004. 61 years old. Ted had almost no speech and a severe learning disability. He was admitted to hospital with urine retention requiring a minor operation and remained there for 3 weeks as he suffered a mild heart attack and a post operative infection. His condition was assessed as concerning but the hospital pushed to discharge him back to his residential home. He was sent home and collapsed and died the following day. Following an inquest it was established that he had died from aspiration pneumonia.
Tom. May 2004. 20 years old. Tom had profound and multiple learning disabilities. Tom’s school advised his parents his was distressed but presumed he wasn’t happy there however they knew he was distressed because he was in pain and pushed for medical investigations. A consultant stated further testing was needed but it seemed to be an issue with his digestive system. No further investigation took place. Tom’s doctor decided against a PEG feeding tube because of fears Tom wouldn’t tolerate it. There was no discussion of alternative feeding methods with his parents. After school was over there was nowhere suitable for Tom and he was placed in a psychiatric unit who stated they would assess his needs and act upon them. They didn’t. Tom was losing weight fast and expressing some disturbing self mutilating behaviour in which his parents were sure it was him expressing his pain. Tom was moved to a social services residential home who admitted him to hospital. Tom had an ulcerated oesophagus. The hospital agreed to fit a PEG and the operation was carried out. Tom died before he could receive the nutrition he needed. So many different agencies look after Tom before he died and no actions were carried out resulting in his death.
Warren. September 2004. 30 years old. Warren had a severe learning disability and very little speech but could communicate well with his family. When Warren first showed signs of distress his parents called the doctor out on three occasions. His parents had their suspicions that he had a problem with his appendix or bowel but the doctor said no. A month down the line they called the doctor out again as he was having trouble swallowing and losing weight. They were told it was a virus. As he was not eating he was also not getting epilepsy medication as it was administered via his food. The doctor gave paracetamol and diazepam to calm his seizures. The next day his parents called an out of hours doctor out who told them to take him to hospital for a stomach xray but that nothing was seriously wrong. A few hours later they called him again and an ambulance was sent. Warren’s parents deceived a negative attitude towards Warren by the hospital staff. 2 hours after admission Warren had died. It was his mom who noticed he had stopped breathing. He died of an infection caused by appendicitis and a blockage caused by a paralysed bowel. Warren could not communicate but multiple people refused to listen to his parents concerns despite them knowing him better than anyone.
Remember them… they are only a small selection of people.
It took the deaths of Emma, Mark, Martin, Ted, Tom and Warren to bring about an inquiry into the inequalities within care that people with learning disabilities face.
Death by indifference: 74 deaths and counting…5 years on. Published in 2012 contained multiple case studies. Including the below remember them; Sophie, Kirsty, Lisa Barbara T, Daisy, Chantel, Carole, Kyle, Betty, Maria, Barbara D, Christian, Karen, Clive, Paul, Tina, Brian, Christopher, Ronnie, Kelly, David I, Michael, Alan, Sandra, Anne, Nicholas, David T, Sammy, Susan, Noel, Raj, Jasseke and 15 unnamed people.
Seems like a large number doesn’t it? Well almost 1200 people with learning disabilities die unnecessarily in hospital each year! Mencap have launched a campaign called ‘treat me well’ which advocates in making simple changes which will have a big impact to the way in which hospitals deal with patients with learning difficulties. I have signed up for as much information as possible in regards to the campaign so hopefully we as a family can get involved in making things better because let’s face it… it couldn’t get much worse.
Dave here 👋🏻 I was trusted to attend a meeting solo as Marie had work commitments. This was a huge deal as she is always the one with the notebook who asks all the questions but I’m still alive so I guess I did well… 🤞🏻
Firsty the wife loves a good snapchat filter but never smiles in any photo. She says she has resting bitch face. I say she is just a massive poser.
Secondly but more importantly can we just address the fact that William looks cute as hell. I do love a good dickie bow on him.
This picture was taken before went out for Big Nans 90th birthday party. 90!!! When you think of a 90 year old you would never picture Big Nan. She acts younger than us sometimes and is so full of energy. She once cut through a small tree using a saw that only had about 3 teeth!
It was a great get together but the older generation don’t seem to understand what is wrong with William and asked thing like ‘will he get better?’ which is heartbreaking because the answer is ‘no’ but at the same time he isn’t poorly so the question isn’t relevant. The understanding we have now about ASD wasn’t available to them and is still a growing knowledgebase.
FYI – the consent forms for the ASD waiting list have been signed so we are just waiting for acceptance nowbut will keep you updated
I won’t lie and tell you I was looking forward to a solo meeting because I really wasn’t. I was nervous and worried I would say the wrong thing or not ask the right questions. Marie is always really prepared and has a notebook full of notes from every single meeting we have had so far. True to form she had made notes for me to guide me with questions and made sure I went armed with the notebook so I could update her as soon as I left.
As the meeting was at 9am getting to the nursery with the boy in tow in a buggy was difficult. It was raining which didn’t help the public transport situation and I struggled to get on a bus and had to wait for a third bus in order to be able to fit on one… after the second one went passed I was very grateful Marie wasn’t there as she would have been what I like to call ‘a bitch’ and I mean that with love but when she is stressed she gets angry and can be mean 😢 a bit like the incredible hulk… you wouldn’t like her when she’s angry.
The usual crew were all in attendance and Sarah our health visitor was late as usual. Health visitors are so overworked and underpaid that I am shocked she has time to attend at all and we are always grateful.
Let’s get the bullshit out the way first. There is apparently only an 18 month wait list for the ASD panel 🤥 they’ve hired new staff and it may be even less… So firstly they haven’t hired new staff… they have connected with a company called Healios who are an online based company who allow people to connect with health professionals via video link. Since they have been on board the waiting list has reduced from 3 years to 2 years and 4 months. This is based on first appointments given to parents in our online support group and their referral date so unless they are recruiting their own staff as well I can’t see it reducing that much more. Apparently a long wait is good at Williams age as diagnosis’ can be seen as a label and they don’t like to label younger children etc etc etc… I understand that but surely it should be done before school? and as it stands now it won’t be and it worries us that his needs may not be met without it.
Going forward William will be set targets by speech and language for us all to work together on to help him develop and improve but until then we aren’t fully sure what we are aiming for. Lisa from Early Years Development will continue to assess his funding and ensure he has the right amount of support each term at nursery.
I also gained a little insight into what will happen next with the ASD panel. This is after our long wait… we will get a large questionnaire which will ask the same medical kind of questions Marie gets asked at every new meeting about her pregnancy and labour etc and about Williams behaviours. They will then want to speak to us about day to day life and then in a separate session will observe William. I worry that if this is online that they won’t be able to get him to cooperate and we would have to wait even longer. In some instances a diagnosis has been given then and there which would be great for us as everyone has said all along he has autism and a severe developmental delay BUT if they can’t do that they will do a ‘watch and wait’ this puts a stopper on it all for 6 to 12 months to see if anything changes. I’m not going to sugar coat it but I would be super pissed if we waited almost 2 and a half years to be told we needed to wait another year!
The paediatrician – she wasn’t at the meeting. Thank fuck. Basically all parties had presumed she would have referred the boy to Physiotherapy due to his movement and the way he holds himself. When I told Marie this she was raging. The woman deffinately rubbed her up the wrong way and told me off. She was not a people person and if you’re good at your job it wouldn’t matter but apparently she isn’t either! We will chase this when we get our next appointment through. She did say it may be with another paediatrician so here’s hoping 🤞🏻
Check out this adorable moment!
William has started sorting his toys and will collect certain types and compile them.
Here he is taking all his trains to the dog 🐕
In our last TAF meeting it was devastating to hear that the boy was only at the age of 9-11 months developmentally and as you may have read it hit me really hard and it took a while to get my head around things and I would love to say I have done this fully but there are still some things I struggle with so I had barely slept the night before thinking there would be no improvement (we had seem some but it hard to trust ourselves if that makes sense) and then I would have to break the news to Marie. so… He is still in the 9 to 11 month development bracket but is slowly emerging into the up to 20 month bracket. He isn’t there yet but there had been no improvement at all in the last meeting so this to us was amazing! and it’s rare we get good news about his development so it was wonderful to hear. Even slow progress is better than no progress.
There was a lot of discussion about an EHCP and his future education but since the wife knows more about that than I do I will let her fill you in at some point.
‘You are already doing a great job at home to help’
This a quote by from Lisa from Early Years Development. It brought a tear to my eye and when Marie found out she cried happy tears.
I bet you are all totally impressed with my note taking skills, I had a great way to make sure I documented everything to be able to relay info… I had my phone recording in my pocket 🤫
Today was THE DAY!!! well almost… William’s referral to the ASD panel will be put through by his Speech and Language therapist. We need to sign our consent on the 10th February when she goes to observe him at nursery and then it’s done. Then we wait for the confirmation letter and the countdown begins ⏱
Today, like most important days didn’t start well. Anxiety at peak and the woman from speech and language hasn’t turned up and it was almost 30 minutes passed our home visit time.
Just like my last Tesco order she had gone to our old address 🤣 She called and was super apologetic but her paper file hadn’t been updated but she was on her way. So Sally (writing her name so I remember it in the future) arrived and jumped in straight away, As soon as she sat down William went to her and grabbed her hands to play ’round and round the garden’ which was a positive sign as he doesn’t often take to new people in that way especially when he’s been poorly. Sunday morning wake up call was to a gunky case of conjunctivitis and a bust lip? Not sure how that happened but he didn’t wake us up when it did.
She asked a lot of the same questions as the Neurodevelopmental Paediatrician did but had a warm way about her that made them less judgemental and abrupt. In between questions she was playing with William as he wouldn’t leave her alone.
This wasn’t the type of appointment in which someone walks in and goes ‘right then Mr & Mrs Buckley, William will definitely start talking soon!’ This was the beginning of a very long process. There is no magic wand to wave to poof things into happening or to speed up William’s development and we’re ok with that as long as things are moving in the right direction and that he is happy.
Sally is sending us on a course ran by 2 speech and language specialists who will help up know how to appropriately encourage William to make more eye contact. She mentioned that usually his SEN worker would go along but believes Val has already had it based on the work she has done with William so far however will send her too if needed. There is a few month waiting list for this so it’s another letter we will be waiting to hit the doormat but we are good with that as we know its coming. she will the check back in with us to see what the next steps are in developing his communication whether it’s BSL, Makaton on the Pecs system. The goal isn’t necessary to get William to start speaking but to enable him to communicate with us in a way he is comfortable with with which make things easier for us all in the long run.
Don’t get me wrong I would kill to have William call me ‘Mummy’ or tell me he loves me but he already does that in his own ways. Like on the rare occasion when he’s tired and comes to cuddle me and moves my hand so I know he wants me to stroke his hair.
hours minutes seconds
It’s Officially The Day
William has several appointments and assessments in the pipeline including an evaluation by IPass who are going to assess him movement to rule out any physical disabilities. The next TAF meeting is in February so hopefully this will get the ball rolling further in regards to his education and an EHCP plan.
Big progress with Williams fine motor skills and his hand eye coordination and it’s all happened in such a short time. He has now done the following for the first times…
* slotted a disc into a small hole * used a fork to scoop, stab and feed * built a lego tower with me * scribbled independently on his whiteboard ➡ Future Picasso according to his Nanna
Today was THE day! Everyone said it was… everyone said it was THE appointment to get him on the ASD Panel waiting list. We were referred to the neurodevelopmental paediatrician because she would be the one to put him on that list… I should have known better, why would this be THE day. A miserable cold day in January when none of the previous ‘THE day’ appointments had been the actual day.
Yesterday we had a tiny step for babykind but a massive leap for William👨🏻🚀 He has been using a fork! 🍴 He had actually been scooping and stabbing his own food and successfully getting it in his mouth. This amazing coordination is a huge achievement for him. He hasn’t reenacted this at home yet but he has a small toy that involves putting a disc into a slot and he has also master that. His current favourite game is putting the disc in and passing me it to fire out for him to do it all again… so basically I spend a good portion of my evenings playing fetch with my toddler 😏 His other favourite pastime is holding me hostage in his room and forcing me to play round and round the garden until I can escape but we are currently on game number 1,00000003 and he still laughs before I even touch his hand which means I will keep going.
His bedtime routine hasn’t improved although our morning one has. His Nanna bought him some adorable all in ones to sleep in which means we don’t have to fully disinfect his room every morning. Don’t get me wrong he still tries to take his pants off at every opportunity… he is just like his dad in that way 😜
He isn’t lashing out as much as he has done in the past but his routine is now settled again so i am hoping it stays that way if he encounters changes. He does need his nails cutting soon so if any of you see me with a bloody face then you can probably guess why.
Today didn’t start particularly well, both David and William had to get up much earlier than usual and neither of them handled it well. I basically hand to turn into Gny. Sgt. Hartman to get them sorted and out of the house! I’m not exactly pleasant when i’m stressed.
Traffic was horrendous and we stayed in the same spot on holderness road for 15 minutes and then to cap it off when we get on our second bus we ended up miles away because the shitting ‘movit’ app crashed. THEN google maps told us to go in the wrong direction! Needless to say both me and Dave were very stressed and took it out on each other. He shouted at me, I shouted at him and then we didn’t speak…
Arriving late is never the impression I want to give so I was very on edge when we finally arrived. The paediatrician whose name I can’t remember didn’t come across well, I don’t know if its because I was on edge but she was very condescending and told Dave off for fidgeting because it was distracting her.
She tipped out some toys for William to play with and grilled us about family history and when William reached his milestones. I couldn’t remember when he first smiled and I felt like a terrible mum. I remembered he was 10 months when he first sat up and 21 months when he was walking independently but I could not for the life of me remember when he first smiled. I remember the feeling and the fact I cried when he first looked at me and smiled but not when. She asked about our family histories and if any one had any history of ASD and there is one person in each side of the family. Both boys and both in Williams generation. Both on our Fathers sides.
How is his medical history, how many times has he been in hospital? How many times has he had antibiotics? What caused his massive allergic reaction? what are his bowel movements like? apparently sluggish bowels are often found in children with autism. Does he have any birthmarks? What was he like as a baby? Was I on medication when pregnant? Other than GD did I have any issues? Did I breastfeed? How was the labour? Well it was fucking hard! it was definitely no walk in the park.
Then she asked about his sleep patterns and we explained how well he slept really well until he turned two. How is his diet? well… when we can get him to eat he will eat anything and everything, even stuff he wont touch with his hands will go into his mouth. His poops often come out gift wrapped due to the amount of paper he eats. Its not worth risking a finger to get it out of his mouth. 👆🏻
Where do I work? What do I do? Where does Dave work? what does his job entail? How many hours do we work? Who lives in our house? How does William interact with the pets? How is his recognition with people? This one is always a touchy subject as he doesn’t really behave differently towards anyone. I explained we could have walked out that room and left him with her and he wouldn’t be any different. On occasion he will show immediate delight when he sees his Big Nanna or my dad but that is it. She explained how it is fairly common for children with autism to fail to bond with people and parents will often struggle due to their feelings not been returned… well this really hit home and I started crying. I love William with every ounce of my being but it is disheartening actually more like devastating when he doesn’t care for me in the same way. If I am holding him when he is upset he will reach for hs dad and when his dad is holding him and i got to kiss him he will pull away from away. How will he know I love him if he rarely lets me show it. When we are alone and i’m the only option he will come and snuggle with me but that isn’t because I am his Mum, it’s because I am there.
She listened to his heartbeat and all was fine, took his weight and height and she also flexed his joints, checked out his hands, feet and his birthmark. Is his skin dry? No… I had forgotten about his chicken skin. I always forget about it because to me it is normal as I had it. Basically chicken skin is a condition called Keratosis Pilaris, it’s basically a build up of keratin in the hair follicles that causes small bumps on the skin. It is hereditary as a few of the women in my family have had it so to us it’s just the norm.
She asked us to strip him off and get him to walk the length of the corridor outside. He did it gingerly, the same way he walks anywhere. She asked us to try and get him to run but he doesn’t run. He never has… we tried to make it a game but he didn’t run just waddled a bit faster. A bit like my version of running 😂 She did speak with us about his walking abilities and how hard things will get when he no longer fits in a stroller and where to look for help. Obviously this wasn’t what we wanted to hear as we hadn’t even thought about the fact he may not get better with his walking so it was a bit of a blow.
She agreed he has a severe developmental delay and the 9-11 months bracket he was put in before was correct. That is 2 whole years behind where he should be. He will be 3 in March which seems crazy as I feel like it was only yesterday we brought him home from the hospital. Although she also agrees that he has severe autism she will not be the one to put him on the ASD waiting list. She wants the speech and language therapist to it. What the actual fuck!!! So let’s just recap who we now know wont, haven’t or cant do it… * Ourselves * The Nursery * His Key Worker * His GP * His Health Visitor * The woman from the Early Years Team * The Paediatrician from A&E * The Community Nursing Team * The Neurodevelopmental Paediatrician They all agree that it is highly likely he is on the spectrum but nothing has actually been done with that knowledge. If the S&L therapist doesn’t do it then I do know who will and just in case anyone spotted me crying hysterically in the middle of anlaby road this is why. The waiting list according to other parents waiting time for first contact is currently 867 days. That is 2 years, 4 months and 15 days. 28 and a half months. 124 weeks. 20,808 hours. 1,248,480 minutes or 74,908,800 seconds. I can’t imagine this wait getting any smaller and the longer it takes to get us on it, the longer it takes to guarantee William the support he needs.
Once again one referral has lead to another and she wants to refer William for blood tests to rule out any underlying issue as autism can often be the symptom of something much bigger. She is also requesting genetic testing. A genetic test can not diagnose autism or detect it early but there are 100 genes that have clear links to autism but no one mutated gene can cause it. For example there is a clear link between children missing the chromosome called 16p11.2 and autism however one 1 in 4 of those missing this have autism. This test can give us a reason as to why him? and I know it’s selfish but I think as parents we need to know its not our fault and that we haven’t caused it somehow.
So no answers were given today and today was not THE day we get on the waiting list. We are back in three months and hopefully will feel like more parts of our journey have been completed.
On a separate note we received a message from the nursery today about an exciting new room they are creating. A sensory room! Children with needs like William’s will be able to spend their time in a special environment tailored to them. William’s Key worker Val will be based in there permanently and as William needs 100% support so will he. I am so pleased with this development. They are a fantastic nursery and i’m very lucky we chose them to care for William.
I started writing this at 7pm and it is currently 1:15 in the morning. William has been throwing up since about 8pm. Terrified me the first time as I thought he was choking on it. He only ever been sick like this once before and it was over a year go. Currently I have a pile of sick covered clothes, cushions and blankets (both mine and his) that need to go in the wash, his pram and travel cot (I didn’t want him in his room alone if he was sick again) sat drying next to the radiator and William asleep on the sofa behind me with a temperature and a towel… Just in case.
‘Why haven’t they done something sooner? It’s obvious there is something wrong with him. He looks real dopey in all his pictures’
It was the above comment made by a ‘friend’ and this spurred me on to publicly post Williams journey on my private facebook page. The main reason was to stop people talking about us without knowing the facts but now I want people to know every aspect of our journey so that should they be going through something similar they know where to start on their own journey or even feel less alone.
For the first two years of Williams life it was easy to ‘sugarcoat’ the things he couldn’t do which was a defence mechanism against those awkward questions.
“Is he not walking yet?” “Why doesn’t he acknowledge me?”
We became so used to answering these questions that our responses became very rehearsed.
“Well let’s face it, he has a moon head like his mummy and because of that he struggled to sit up until he was 10 months old. He just needs to build his neck muscles because it’s a big weight to carry” we would laugh it off because when he born the doctor measured his head 3 times to check he had it right. His measurements were all in the 25th percentile except his head which was in the 91st and in all fairness the Hobman side of the family do all have massive noggins 😜 “He is just ignorant bless him. There’s nothing wrong with his hearing he can hear a packet of crisps being opened from three rooms away”
William was 26 months old when we decided to send him to nursery for the first time, one full day a week away from us to help with his socialisation and communication skills. We should have done it sooner and believe me people mentioned it. BUT have you ever tried to find an extra £190 a month?! We work almost 65 hours a week between us but with bills to pay its a lot of money but we managed to find it.
Williams 2 and a half year check up wasn’t with his usual Health Visitor; Sarah, it was with a stranger in a health centre we had never been to before which immediately put us on edge. We had received the usual questionnaire about what he can and can’t do and when we sat down as a family to complete it we had to remind ourselves not to exaggerate and be brutally honest about which areas he was struggling in. Dave found this exceptionally hard as he was more in denial than myself and at that point wouldn’t engage in the ‘What if?’ conversations.
Looking back the lady who carried out this development check was lovely but on that day she was the devil 👿 She stopped what she called ‘the assessment’ and in my head she said “You’re sons a fucking retard so there no point in this” however what she said actually said is something along the lines of “I think we should stop as I don’t to want to upset William but…” We sat on the wall outside the health centre in full view of the main road and cried; we cried for the dream of a normal child, we cried because why would this be happening to us? We had tried so hard for a baby and done everything right! How would we tell people? Is it our fault?
The health visitor came to our house within a week after our meeting with the devil and continued the assessment. I always feel much more at ease with Sarah than other professionals. She has that reassuring way about her that people’s mums and grandparents have that just comes naturally to some people. She spoke through Williams development and what he was and wasn’t excelling in and said ‘the devil’ had told her she had referred him to a speech & language therapist and Sarah agreed it was the best step and she too would refer him on top of speaking to his nursery about his needs. At this point she had no concerns that he could be on the spectrum.
It was the Easter whilst waiting for the next step that the above comment was made and it really hurt as it was a big step for us admitting something wasn’t right for a close ‘friend’ to then say something like that. Especially as said ‘friend’ had known me almost all my life. She has never spoken to me about what she said or about anything else to be honest since I found out. She has defended herself to others. This person had attended or been invited to such big events in my life that I missed who I thought she was for a long time but she was obviously never that person. As time has passed I often think I should thank her for been the kind of person that would say things like that about a child because it made us become more open about what we are going through not only to ourselves but to a much wider audience.