There is no manual for being a parent, there are help books and forums that can point you in the right direction, but what if your child has autism? Every single day is different and thing which have been successful in the past may not work out in the future. If there was a manual for William, then I would give up everything I have for just an indication that I was doing something right.
Days like today are tough, I don’t know if it’s because I was already feeling a bit low, but the most insignificant thing tipped me over the edge… Orbeez. They are these tiny little beads that grow much bigger when in water and anyone who has used the will probably think it was the disposal that I found traumatising, but it wasn’t. We have used these on a fair few occasions and William has loved them with no incident, so much so that I had 50 thousand of the little fuckers to fill the bath with. He didn’t want to get in and lashed out at me, then he grabbed handfuls of them and threw them all over the bathroom but decided he did in fact want to get in and proceeded to fight me as I tried to remove his nappy. Once in the tub it went even further downhill as he started eating them… FUCK YOU PICA! I kept stopping him putting them in his mouth but, his other hand was ready with a fistful to shovel in and holding onto both was near on impossible. Getting him out the bath felt the same as he didn’t want to so flopped himself down and flopping about when I tried to grab a hold of him. It felt like hours, just stopping him eating them (and failing) and trying to coax him out of the bath.
I wrapped him in a towel, and he snuggled into me, I sat there telling my four year old that I didn’t know what I was doing and that I would try to do better, that he deserves a better mom than me. It was all very dramatic even for my standards over a few non-toxic water beads. 🙄
I’m just having one of those days in which I feel like I am not good enough, these kind of days just creep up on you like a small grey cloud in the sky but before you even notice you are suddenly in a thunderstorm. That’s how my head feels today. A little overcast and very dark ☁ but I am sure it will pass… just like the Orbeez.
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Let’s have a moment of silence for all those moms that expected this week to be something it isn’t…
Let’s think of those parents whose children are starting mainstream schools; those parents who are scared that this isn’t the right environment for their child and the parents who know it isn’t the right environment for their child but whose hands were forced.
Let’s think of the parents like myself whose children are yet to be allocated a suitable school. Whose children are getting left behind.
But let’s also celebrate the parents of all the four-year-olds out there who are happily and successfully starting their school journey. I will like their first day pictures on Facebook and comment about how adorable and grown up they look, but it’s tinged with sadness on my part.
We are back at the stage of jealousy for me, the green-eyed monster has reared its ugly head… ‘Why isn’t that my child?’ ‘Why do that child’s parents get all these experiences that I once dreamed of?’ ‘What did I do wrong, and they do right?’
Its stupid to think that way and usually its easy to swat away those thoughts like flies but right now its hard. I think that’s because its everywhere, social media, supermarkets, TV. There is no escape from what this week is. Its the start of the school year! Whoop de fucking whoop!
I wanted to photograph William in my street as me and H were outside my mom’s, I wanted to take photos with next doors youngest girl as she is starting secondary school, both in their slightly big but immaculate uniforms on their first days…but that isn’t happening.
I was naive and booked this week off work, I’m not so why as we were no closer to William securing a suitable setting but I guess I will still hopeful (or still had my head in the sand who knows 🤷♀️) I envisioned walking him to school and meeting other parents, talking about how big our kids are and how they’ve grown up so fast, how it was only yesterday when they were still in nappies and toddling around. I feel hard done to, and I know how bad that sounds as William is such a beautiful child and I wouldn’t change him for the world, but right now I feel robbed. Robbed of the firsts in which I expected. Every day with William is wonderful but as his peers are growing up and moving on, he just isn’t. We are in the same place we were 2 years ago, nursery, nappies, messy mealtimes… don’t get me wrong, I do know and fully appreciate how far he has come in those two years but this week its hard.
My week off will now be dedicated to decorating, continuing the journey of turning my house into a home, something to keep me busy and my mind occupied as we follow the same routine we have for years. I’m so grateful that William’s nursery said they would keep him as long as possible, but that journey should have naturally ended now, and it hasn’t.
So again, let’s just take a moment for those moms whose week isn’t as expected, those who instead feel angry about it, disappointed, upset. Those moms who may spend this morning crying into their coffee, writing angrily at a laptop or smiling through the heartache or in some cases all three.
All my love to all moms out there, no matter the situation you are in this week 😘 M. x
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Then a silence that chilled my soul. The type of silence that comes when the tears dont stop but you can’t breathe enough to make noise… I know this song is about domestic violence but I felt it was an accurate (even though edited) lyric to describe my emotions yesterday.
I’m not sure if I mentioned this previous but I had invoked my right of access in accordance with the GDPR act 2018, requesting the local authority send me all information in relation to educational matters for William… if anyone reading this is going through something similar; I have an amazing template that another mom sent me 🙂
Lets just throw out there that I have had an amazing week in relation to William, he was at his dads so I had chance to plan my next venture into decorating but I received Williams blue badge which give us the right to park in a disabled bay (I don’t drive but will come in very handy when we are in someone else’s car) and I spoke to the nursery who have advised I no longer have to pay for William to attend and only pay for his meals, well I am in credit so I won’t have to pay anything right up until he leaves next Easter.
The right of access is also known as a subject access request was received today, and it’s made me so angry and upset that I needed to lock myself in the bathroom (The MR was here and he isn’t ready to see this side of me yet or maybe I’m just not ready to show him🤨) but I angry cried, you know the type; loud and messy. Smacking my fists on the floor feeling like my rage would destroy the concrete and not my hands. My neighbours must have heard me and I’m pretty sure I made noises only dogs could hear but I needed to let it out but I was so worked up that I couldn’t breathe and the angry tears became silent ones that I had even less control over. The reason I had done a S.A.R was to catch them out in lies to back up the potential tribunal but I didn’t realise that it would reopen old wounds 🤕
I remember special school allocations like it was yesterday, it was another couldn’t breathe moment. It was February 15th. check out the post School allocations, if you cant remember. July 2020 we were told he was going to considered for place… There isn’t a single document in the full S.A.R relating to any conversations in regard to this! not one! meaning that when I said the whole thing was all fucking lies, I was in fact correct. It was all fucking lies!
There are lots of missing sections, specifically relating to meetings, discussions and referrals in which I took our senco’s word for and apparently haven’t happened. I believe there is another child’s information in there too (How many times is the L.A going to breech GDPR? actually don’t answer that since they are still referring to the 1998 DPA act in their emails)
I’m angry at myself for being so upset, especially when its just confirming what I already knew, I only wanted the documentation to back up my claims with the solicitor and hadn’t even considered how it would make me feel 🙄
There was something else in there that I have great concern with but am awaiting clarification on its meaning before I comment on it but if what I think I am reading is correct then the whole fucking authority is morally wrong and incapable of putting children above themselves.
Stay tuned in by subscribing so you don’t miss out on the instalment of ‘how the local authority fuck us over’
Much love, M.x
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‘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.
Today was the day in which I should have had an update about Williams EHCP, I should have been able to figure out what the next steps are going to be for Williams education and find out if that slim chance of a special school allocation was within our grasp.
However today was not that day. No days are the days they should be and I an beginning to learn this… I need to prepare myself for these things as they happen all the time and yet continue to knock me for six. As parents we shouldn’t be continuously let down by those who are supposed to support our children and adhere to timescales laid out by themselves.
The EHCP has not gone to the moderators… Still! This is because the medical report needed and the Speech and language report have still not been received. These should have been submitted by 15th of February and its now 4th March 🙄😡
So now we are back in the waiting game… Next week or the one after. Who even knows?!
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.
I always thought I wanted two children but once we actually started trying to get pregnant I soon changed my mind. I have a sister (H) and although we argued; like sisters do but I couldn’t have imagined my childhood without her or even my life now. Dave however always wanted just one. He too has a sibling but not with a bond like H and I have and maybe that is why he only ever wanted one.
We agreed we would discuss it again when William turned one… Still only wanted one child. We will discuss it again when he goes to school and again when we turn 34, after all I wouldn’t want to fall into that geriatric mom category of 35!!! since when was 35 classed as geriatric?!
I always said that I couldn’t put myself through it again but I get this little pang when I see my friends with their ‘normal’ or neurotypical children. Surely I deserve that? Why can’t I have it? All those moments I feel like I’ve been deprived of… A baby who will call me Mummy and will be receptive to my cuddles. A baby who can be comforted by me. A baby who would love me back.
Facebook is the root of all evil… & envy, its banner should be green not blue! I see so many beautiful babies and children on my news feed. Children much younger than William easily communicating with their parents and making it look so easy. Children singing, counting and developing at the correct rates and it breaks my heart 💔 I am so happy for all of my friends who are parents and why shouldn’t they sing it from the rooftops when their child learns something new. It just gets to a point that I just can’t see it anymore. I have un-followed so many people because I am just brimming with jealousy and it hurts me to admit that because I would never wish any parent to go through what we are but I just want what they have. Why can’t I have that?
But then I look at William who has started eating bread, not toasted bread or chocolate bread but normal bread and I want to celebrate it. He ate a sandwich!!! not one but several! My little man who is repulsed by the touch of bread actually ate a sandwich himself 🤭 But then he also decided he didn’t want to wear any clothes at all and chose to ignore me for what feels like the 1095th day in row.
Before i continue i just want to say it again…. My baby ate a sandwich, not once but on three separate occasions last week!!! He touched bread and it didn’t end in him throwing it on the floor and recoiling in disgust. It was a beautiful sight as you can see.
This week I called my mom very teary because I had ‘that moment’ a moment most parents have every day. me and William had spent the day I the garden and needed a bath but bath times are traumatic at best so I decided to turn the shower head on and sit underneath it with him. He laid there so calm as the water rained down on us and looked me in the eyes the entire time. That moment is something I had been waiting for for 3 years. That moment he looked at me and everything was fine. That moment I knew he did love me but shows it in his own way.
If I don’t get another moment for the next three years I can hold on to those perfect 10 minutes in which he just looked at me and with his eyes told me I was doing OK as his mom.
I think about how William would react to a sibling and I always (well 90% of the time) think it would be really selfish of us to even consider it. William needs a lot of attention and he would not have that like he does now. I don’t think he could cope with the immediate and permanent changes to his routine. You couldn’t train a baby into doing things the way your older child needs/wants them to be done.
But then… I think maybe just maybe William may flourish with a sibling. Research shows for neurotypical people that having a sibling can have a positive impact on both mental and physical health. However separate studies based on siblings of autistic children clearly show that the neurotypical child often develop social and emotional difficulties. Would there ever be enough time to give a second child the attention the would need or deserve? I look (again with envy) at other parents who are in a similar situation to ours and wonder how they make it look so easy? so effortless? I often think of these parents as ‘the Naturals’ whose days are exhausting because they have spent them being the truly amazing parents that they are. I’m an ‘Impostor Parent’ and am exhausted from spending my days trying to be an adequate parent.
I think of the trying, the pregnancy, the complications, the labour and the mental health issues that came after and I just think ‘Fuck it! lets get another dog!’ but then I think of how often Rusty used to shit on the carpet and think better of it. I clean enough poo from the floor as it is. I think it’s best off just staying the five of us… well four ifI get my way about that arsehole cat. (totally kidding as i was heartbroken whilst he was missing 🐈but still an arsehole)
April is around the corner and with the obligatory showers also comes Autism Awareness month and I thought it was a good opportunity to discuss pros and cons of having our children ‘labelled’ with an ASD.
I had a conversation recently about someone who sees it as a burden and doesn’t want their child labelling as they feel it could reduce their child’s ability to get a job in the future and have a worthwhile career.
I did a little research on labelling children and there is a phenomenon called The Pygmalion Effect.
Pygmalion was a cypriot sculptor who fell in love with a statue he carved.
The movie My Fair Lady is loosely based upon the original story.
The Pygmalion Effect states that high expectations lead to better performance and low expectations lead to worse, both effects leading to a self fulfilling prophecy. The kids of either of the expectations internalize their positive labels and succeed accordingly; a similar process works in the opposite direction in the case of low expectations. The idea behind the Pygmalion effect is that increasing the teachers/employers expectation of the child’s performance will result in better performance from said child.
I think my personal Pygmalion Effect synopsis is much more straightforward. Pygmalion fell in love with an idea. His idea of perfection in which he made himself but it as not real and longed for it to be real so much that he asked one of the gods to bring his statue to life as nothing could compare to his love for it. This resonates with us as a family and probably with any other parents who initially struggled to come to terms with the thoughts that their child wasn’t as they envisioned but that vision wasn’t real, it was a dream and even when Pygmalion carved his dream into a sculpture so he could see it, it still wasn’t real but nothing he had could compare to this idea of perfection. We all want the best for our children and want them to have every opportunity to reach their own potential. We might worry that a diagnosis runs the risk of exclusion, bullying or even well-intentioned fuss being shown towards them. Bullying and exclusion however are problems for anyone with or without a diagnosis however with more openness and education both formal in school settings and informal like our blog and the many others out there about Autism people will begin to understand and help people see the child and not the label. I’m not saying that it’s not a difficult battle but I want to be on the right side of it. The side saying ‘Its ok to be Autistic’, ‘Its ok to different’ because looking at the people around you are we all really the same on a neurological level? No.
Will Autism prevent my child finding a job or more importantly a career? Maybe. But the more understand there is on this subject the better th chances will be. As of 2016 just 16% of Autistic adults were in full time employment and an additional 16% in some form of paid work, at this point the National Autism Society were reaching out to companies to become Autism Friendly Employers. David Cameron (The pig guy🐖 incase you can’t remember. Who could forget?) said by 2020 they aimed to increase this, doubling it to 64% of Autistic adults in paid employment and narrow the gap but the government have yet to publish any findings, in fact I have struggled to find any statistics since the initial report in 2016 by NAS. In 2019 Minister of State for disabled people; Justin Tomlinson said they are now going to ‘look at’ measuring the statistics of the employment gap… If they have not yet started monitoring the statistic how did they expect in to improve 3 years after Cameron’s promise? We are now in 2020 and have no idea if things have improved or if any of the schemes regarding getting Autistic people into work have been working!
There was due to be an Autism at work summit in London on 4th June this year but due to the current situation it has been postponed… God Damn you COVID-19 😷 I’m really hoping it gets rescheduled as I would love to hear about initiatives to help people with Autism in their future and it would be something I would love to get involved in and hopefully bring to my own workplace.
I am very pro diagnosis. It is so difficult to get children with a diagnosis the correct support and almost impossible for those without it. How can any parent purposely stop their child getting the support they need at such a vulnerable age to protect something they may not need protecting? We all know William has a developmental delay that may or may not be related to his autism; so lets ‘ignore’ that just for this hypothetical scenario… So William is starting mainstream primary school because without the right steps in place he doesn’t have a cat in hells chance at a special school place or the special provisions available in some mainstream schools. He can’t focus in class as they aren’t teaching him in an appropriate way to he needs so he isn’t performing in class and is labelled as a “naughty” child because he is lashing out in frustration and has hit someone and bitten the teacher when they tried to show him how to hold his pen. Other children don’t want to play with him as he wont play the traditional way and won’t have the immediate guidance he needs. He is sad as he is frustrated and segregated from his class. He goes to high school but because he wasn’t supported enough to be able to focus on sitting exams he is automatically placed in the lowest settings but he still struggles to perform. He won’t wear his school uniform because its itchy or the buttons are in the wrong places or simply because he doesn’t like the colour. They send him home to change but he wont. He is excluded because he keeps going to school in the wrong uniform or when in the right uniform removes items of clothing in public because he doesn’t understand it’s not appropriate. The school doesn’t want him to sit his GCSE’s as there is no way he will get any grades and he will bring down the schools averages but he also doesn’t want to sit them; he doesn’t want to be the big musty smelling hall in silence for all that time when he hasn’t learnt what in front of him in the last 5 years. He’s just learnt that he is alone and no one really understands him. He can’t go to college as he doesn’t have GCSEs and they won’t let him resit because hasn’t learnt the subjects. What chance of a career does he have now? but with a diagnosis there is a 16% chance but its a much bigger chance than without one?
Use this box below to let me know your opinion on diagnosis – its anonymous so don’t worry about being politically correct in order to explain your opinion as I will be doing a follow up to this post.