The purpose of literature is to turn blood into ink.
I am well aware that the above Eliot quote is not actually a direct quote but it fit nicely with my reason for today’s post. William’s dreaded blood tests.
Back in January we went to see that delightful paediatrician that told Dave off for fidgeting and spoke down to us, not that it bothered me or anything 😡 She told us that she would refer William for some blood tests; two samples needed… * One to check for anything in his blood that indicates something may be medically wrong with him which means autism is a symptom and not the cause. * And the other to send for genetics testing; this will confirm our rule out genetic conditions that have or can be passed down.
Jan 22nd – Paediatrician
March 24th – Lockdown
May 18th – Paediatrician
May 26th – Blood test
June 8th – Blood test
The Paediatrician told us it would be a few weeks until we received a letter so when we were at at TAF meeting at the beginning of February and Sarah told us it wasn’t on his record yet but that wasn’t uncommon we weren’t worried. BUT THEN… LOCKDOWN HAPPENED! 🔒 Things were still happening and a telephone appointment came through for a different paediatrician 🙌 it didn’t explain what would be discussed so understandably we were nervous. I’m not sure who called but it wasn’t the first paediatrician or the one mentioned on the letter. It was a gentleman who sounded like robocop with and a strong accent and poor phone signal.
He had called to discuss Williams blood test results 🔮 you know the ones he hadn’t had yet!!
⏩⏩⏩ fast forward a few days and I get a call to say we can attend a blood test at Kingswood that afternoon, it wasn’t possible as we don’t drive and it was already 11am and by the time we had gotten 2 buses (baring in mind I haven’t gone out in public for over 60 days) we would have missed the clinic. The next one was 26th May at his paediatrician office so we went for it. Only one person could attend and it was too short notice to post a letter out to us so it was sent in a text form instead. 📱 this contained a link to a letter about what happens at these appointments, let me go through it and tell you how useful this was to a child like William.
At the appointment we will talk to your child to explain what will happen and what we need them to do during the procedure. You may wish to bring a favourite toy/book as a distraction. This is brilliant! Three years of not been able to communicate the most simple of things like ‘Don’t bite me’, ‘Get down’ or ‘That’s Naughty’ but suddenly they are telling me that they will explain how and why they are about to restrain him and jab at him with a needle. People often ask me when we go out why I haven’t brought any toys for William. There is only one answer… William doesn’t play like other children. He isn’t interested in conventional toys and often retreats into himself in lieu of ‘playing’
Depending on their age and size,your child will be asked if they would prefer to sit on their parents/guardians knee. This not only gives comfort and reassurance to your child, but also helps as you are able to hold your child still for the test. Again you can ask William what he wants but he wont acknowledge you, If he isn’t sat on Dave’s knee then he would have wandered off from the room and this wouldn’t give William comfort as he only wants to be held on his terms. Imagine trying to restrain a pissed off octopus 🐙
We have a local anaesthetic spray that we can apply to the skin prior to blood being taken at the appointment. The spray is very cold and will help numb the area.
Please inform staff if your child is diabetic or is being investigated for diabetes as this may affect use of this spray
If you do not feel that the cold spray is appropriate for your child you may prefer to use a topical numbing cream. As it takes some time to work this will need to be applied before coming to the appointment. You would need to contact your GP for a prescription for this. Talk to your pharmacist about how to use the product correctly before your appointment
If requesting or purchasing the topical cream please take a copy of the appointment letter ad this consent form into your GP surgery or pharmacy. So these four bullet points all relate to a numbing spray or cream. Should I have needed the topical cream for William then it would have been near on impossible to obtain. Called on a Friday, this link and text not received until late Friday afternoon. Bank holiday Monday. How would we have gotten into doctors? Let alone take our nonexistent letter in to them. No even going to address a consent form since it wasn’t mentioned nor sent.
Dave does all the bad appointments; you know the kind like injections or ones with people who just put your kid on edge and now blood tests, it’s not because I don’t want to take him but because he knows I would fall apart and be useless.
The first thing they asked David for when he arrived was Williams urine sample. You know the one they didn’t ask for. The one that isn’t mentioned in the text we received nor in the bullet points above. 😕 The gave Dave a vial to obtain a sample… a sample from a child who relies 100% on nappies, what is he going to go follow him around and wait for him to start weeing everywhere? They are now sending us a pack out in the post to use in his nappy. I think its just a sanitary pad kind of thing as that is what they gave us when he had been admitted to hospital.
The freeze spray was good as it made William giggle like when we put sun cream on him. Whether it numbed the area adequately is a different question to one in which we don’t have the answer for but I hope so.
💉Ever heard of a technique called dripping? I hadn’t so when Dave came home and explained that they hadn’t been able to use a needle so they let blood drip down his hand into a vial. He explained his hand was covered in blood… I’m not going to lie I freaked out! Surely this wasn’t an appropriate way to take blood? So i went straight to the internet and I couldn’t find a single thing about it on google. I read 225 pages of the WHO guidelines; best practices in phlebotomy and there was nothing in there either.
Luckily I am a member of a group on Facebook full of parents in my local area who’s children have SEN. Several of them immediately jumped onto my post to my mind at ease. It is actually a well used method called the ‘Gravity Method’ which is basically where they stab the vein with a needle and let gravity do its thing so that blood drips into the vial until they have a adequately sized sample.
Unfortunately they only managed to fill one vial which is marked for his genetics testing and will be sent to Leeds. This means that poor William has to go through this again in a few weeks time.💉 Thankfully they are doing a home visit next time so hopefully in his familiar surroundings he will be more calm and distractable 🤞 I will just need to make sure I have baked another treat for William once its over since despite the ‘trauma’ it didn’t stop him eating two large pieces of sponge cake.
So now the only thing we can do until the next blood test is to wait for the results of this one vial. Genetics testing recently has been taking less than 12 weeks for results however some parents have waited an extraordinary amount of time so it’s just something else we have to wait for, another count down.
Autism. How to raise a happy autistic child. By Jessie Hewitson
OK so I want to start by saying the cover and title of this book really put me off. It felt a little too ‘self helpy’ for my liking and although I needed guidance I want quite ready for the self help section of amazon if you know what I mean. The book itself was recommended on multiple sites and Facebook pages for parents ‘finding their feet’ in the turbulent waters of ASD. It wasn’t until Debs told me to read it did I buy it… well almost. I put it in my Amazon basket and decided I was ready a few months later.
My review may come across a little scatty but I am writing it as I read and I have a nasty habit of putting books down and forgetting they exist. (9 months I tried to Big Little Lies and still never finished it.) Don’t get me wrong I love reading but I have to really be enthralled by the characters or story line for it keep me interested. Now Harry potter is a book I can read over and over again. In fact I had read all 7 books to William before he turned one. We even read Cursed Child but we try not to discuss that monstrosity in this house.
I want to kick my review off with a quote from one of the first pages in her book.
I should have read this book a year ago and I’m not the only one. I couldn’t put the book down for the first few chapters which is always a great sign. Have any of you heard of Donald Triplett? Well neither had I!
This is Donald Triplett. He was the first ever person to be officially diagnosed with autism. Case number 1. Numero uno. Patient zero. His parents were told to put him in an institution… and they did!!! Can you imagine giving up on your child like that? I can only imagine what was going on in their head. Thankfully after a year they went back to collect him. He was their child not a puppy you can return to the pound.
Donald is now 87 years old. He has had a successful career as a bank teller, drives his own car and enjoys travelling the world. Donald is an inspiration to anyone with autism and hope from any parent of a child with autism who thinks its no longer possible for their child to live a ‘normal’ life. My advice to those parents and believe me its something I have to remind myself is to think of Donald. When things get exceptionally tough and my head goes to all those dark thoughts about things William might never do. I need to remind myself to think of Donald.
If you have read our post about the poem entitled Welcome to Holland you will understand why this next exert really resonates with me. If you haven’t read it then click the clink 😊
The book has introduced me to the term ‘Refrigerator Mother’ in 1949 Leo Kanner (who diagnosed Donald) suggested that autism was a response to a lack of maternal warmth, in fact he went as far to condemn parents of autistic children. Bruno Bettleheim took this theory and ran with it resulting in the ‘Refrigerator Mother’ theory becoming the mainstream consensus as a reason for autism.
Thank God this was way before my time because I feel irrationally guilty now but imagine if someone had told me it was all my fault because I didn’t love my child enough. It would be devastating. My heart breaks for all the mother back then who already struggled to bond with their babies.
It wasn’t until the 70s when 2 British doctors; Lorna Wing and Judith Gould developed a better understanding of autism. Lorna who had a daughter with autism knew firsthand that the ‘Refrigerator Mother’ theory was absolute bullshit and set out to prove both Kanner and Bettleheim wrong. She concluded that autism was in fact a spectrum meaning it was most definitely not as rare as her predecessors had claimed.
The two men had started the job of establishing what autism is but like any job, the men (or at least Dave anyways) never finished it and the women got fed up of waiting so finished it themselves. Before you jump on me… there was a hole in my bedroom wall for two years that I eventually fixed 🤣
Jessie talks in depth about building a team. This team helps both parents and child and can include professionals, friends or family members and its made me think of our team and how its members came to us in the most surprising ways.
First on our team is my amazing mother (honestly look at her, how beautiful is she?!) and our best friend Debs. Both from day one slowly dripped into our ears that something wasn’t quite right, William wasn’t meeting his milestones and originally they could be laughed off with a joke ‘Oh he’s just lazy like his dad’ I’m not going to lie either they weren’t always met with nice responses and I remember yelling at my mom through tears ‘don’t you think I know!’ and I cringe thinking of that conversation now because even though I was angry it was probably the first time I admitted out loud something was wrong.
Ian, I’m not going to lie I have known him for probably over a decade but we had never been ‘friends’ until maybe about 2 years ago. He was kind enough to drive me home from work when I got stuck for a bus. It took a few journeys before broaching the subject of his little boy and asking not so subtle questions… ‘When did you first know?’ Well its safe to say he saw straight through me and soon our chats about our children’s development became a regular occurrence and were something I looked forward to as I could speak openly without being judged. Fast forward to present day and Ian has done so much for us whether it is letting us know what certain acronyms mean, what processes need to be followed or what help we can get and from where. Only the other day he spent 45 mins on the phone with me helping me fill out a form and recommending drinking cups that William wont chew through 😬 I can safely say that I am ashamed it took me so long to get to know Ian as in his own words he is skilled at being a good person and a fucking arsehole at the same time!
My sister H who listened to me bitch and moan when the comments about Williams development stopped being subtle. Who has answered the phone and celebrated with me every time I have cried and laughed because William looked at me or touched bread or did something that other parents see every day.
Emma, Tish & Danielle who are always on hand to listen to me rant and are Willing to spend their free time doing William friendly activities that don’t necessarily keep their own children entertained.
These are but a few people but there are so many more. Everyone that asks after William, thinks of him and those that read our blog are all supporting us and we are so grateful for each and everyone of you. I don’t think we could be so open about our journey with out you all.
The professionals involved are equally amazing, Laura, Linda and Val are his amazing support team at nursery. We have recently been contacted by our local school nursery as we had put his name down for a place before we have even moved house. It’s that close I could literally throw William like rugby ball from the front door and he would be there. We have decided we no longer want a place for him, not just because he wont be going to the school but the ladies at his current nursery have been amazing and William has bonded with each of them. Why mess with perfection? Lisa from the council who attends ever meeting and has called to check in with us during this pandemic to make sure the three of us were doing OK. Not to mention responding to my slightly panicked emails about the recent EHCP announcement. Sarah, a real life wonder woman! Our health visitor is truly amazing. I really hope her other families appreciate her as much as we do. We couldn’t have done half and a quarter of what we have without her. We moved house and even though we are outside her ‘jurisdiction’ she has stayed with us and continues to turn up to all of Williams meetings despite being over worked.
Jessie explains that it will take a very long time to fully establish your team both personal and professional. I know as William gets older his professional help will change to match his needs and our personal one may differ as people flit in and out of our lives and we are trying to prepare for it as daunting as it may be. William isn’t the only one in our family who doesn’t adapt well to change 😳
Children from BAME communities are less likely to be diagnosed with autism than white children. There are massive racial disparities when it comes to obtaining an ASD diagnosis. Hispanic children are 65% less likely and black children 19% less likely to receive an autism diagnosis than a white child. Jessie explains in her book that she found pretty much nothing in relation to autism within the BAME communities. Not because it is less prevalent within their race but because there are certain barriers. Some languages do not have a word or phrase for Autism and a Somali parent is quoted stating her family and friend refer to their daughter as ‘Crazy Girl’ (If you read our post about vaccines you will recall Andrew Wakefield preying on a Somali community which resulted in an out break of measles.) It is not uncommon that families will not have access to an interpreter for their meetings meaning and that they will be forced to rely on relatives, friends or often children to interpret meetings they do not necessarily understand. Vanessa Bobb states there is a real fear that within her community that this is just another label for black boys. The misdiagnosis of African-American children is FIVE TIMES higher than that of any other race! Five times? Is there that much of a difference between white children and black children? I don’t think so!
Jessie explains that she uses list to organise her life and her sons. I love Jessie for this! I also love lists! I have lists about lists, lists about when William has had a bowel movement, lists about when he has slept through the night, honestly I fucking love lists! They not only help me with William but they also help me function in day to day life.
Parents often lose hope and according to Dr Stella Acquarone it is her job as a professional to tell parents that it is going to be a good life for both them and their child.
It was only today that I filled out our ‘Parents View’ form for our PCP meeting which is to support our EHCP application. The final section asks ‘What are your hopes and aspirations for your child’s future?’ and our only answer was for him to be happy. We don’t want him to be rich or famous. Just happy. Isn’t that what we all want for our children? Why should it be different if our children are autistic?
Jessie explains that she started writing Chapter 8 –learning to play by discussing the best ways to teach your child to play with you but eventually scrapped that idea because in her words.
She spoke about putting on a show, this is something all parents do but for parents of autistic children it is exceptionally hard. By doing this you are focusing your energy on yourself and not in spending time with your child. I am guilty of this. I have tried to put on a show. Look at my normal little family doing this, look at this… its all fake. She describes waiting for her son to start behaving normally. Something we still find ourselves doing. By waiting for something to happen you can potentially miss what is actually happening around you.
The book fully listed pro’s and cons of different types of schooling. A must read section for anyone with a child starting their school applications soon. I do wish there were clear instructions in regards to what to do with schooling but I know that’s not possible. What works for one child wouldn’t necessarily work for another. I just worry that we will make the wrong decisions but I suppose every parent has that worry whether their child is autistic or not. We believe based on Williams need that a special school would be the best fit for him and the pro’s and con’s have solidified that for us. There is even a handy list of questions to ask when viewing a special school which I will most definitely transfer to my trusty notebook when the time is right to visit.
Mind Blowing Facts about Funding! Mainstream schools receive £6,000 per year for per pupil with SEN. 💰 Special schools receive £10,000 per pupil per year. 💰 If the schools feel this funding isn’t adequate they can appeal for more.
I have already read many horror stories about local authorities and how little support the give families with children with SEN. Jessie states that when she is in her exercise class and partakes in boxing that she she doesn’t picture a person to punch but in fact pictures her local authority. I want to share her story of obtaining an EHCP document, I have shortened it a little as I have used that many exerts in this review that I may as well have just scanned each and every page for you.
The journey starts and the document states black is white.
But black obviously isn’t white so you call them to correct it but no one ever answers.
You resort to email and wait for a reply. Finally when it arrives it states that black is definitely white.
You have to reply and explain the law states black is actually black.
They never reply and you have to hound them.
When they finally respond they tell you its going to their SEN panel for discussion This can take up yo a month and yet you still have to hound them for an answer.
The panel agrees that black is white
You are forced to go to a tribunal in which the council drag out the process with £1000’s of tax payer money. Money that could be better spent elsewhere.
It is finally settled by a 2 person panel who advise black is black.It was always black.
White was never black. But it was in fact a cheaper colour than black and the local authority hoped you would give up.
This isn’t the end. renegotiation’s of what colour black is must take place at least once a year.
We are just dipping our toes into the murky waters of the EHCP process and we really need black to be black but we are prepared to fight if we need to. According to Jessie the EHCP process should take 6 weeks but only 58% of local authorities can stick to this time frame. We have been told it can take up to 10 weeks so I am presuming that it has been a long time since Hull has been in the 58% Some local authorities decline all EHCP requests upon first application in a disgusting way to manage their workload hoping the parents wont try again.
The devil is in the (lack of) detail EHCPs can be vague leaving them open to interpretation meaning it can sound like they are going to provide all the support your child needs but the way in which it is worded can mean they will only get a fraction of this support. They need to be exceptional detailed with time frames and what if’s.
I think this book is a must read to any parent who has or suspects they have an autistic child. Its a really well written manual of what is to be expected and prepares you for the pitfalls of ‘support’ you will receive from the authorities. Some of the sections weren’t relevant to William due to his specific difficulties but as autism a spectrum this book would have been a hell of a lot bigger than its 284 pages should she have researched and included every possible scenario for an autistic child. The book is absolutely brilliant and touched on or delved into so many subjects that I now feel a little more confident having read it and confidence is something a parent of an autistic child often lacks. I feel over the coming years this book will be highlighted, dogeared and full of scribbles as I feel we will be pulling it out before each new leg of our journey. Thank you Jessie! 👏
Its not a word you would usually come across in day to day life. When I think of it I used to be reminded of the scene in Pearl Harbour in which the nurses have to mark the wounded men with lipstick.
For us triage is part one of a much bigger process, a process that has consumed our lives and will continue to do so until William receives a diagnosis. William’s triage appointment was today… As you can understand due to the current pandemic this appointment is not face to face but instead was done over the phone.
I’m not going to lie to you and tell you I slept well (or even at all) last night waiting for this call, the crazy irrational thoughts kept me awake… ‘what if they decide he doesn’t need to be on the waiting list and we have to start afresh in a different sector’ ‘what if they say he is the way he is because we are shit parents’ ‘What if I don’t say the right things?’
I know it’s irrational and crazy and so does Dave or at least that’s what he told me at daft o’clock this morning when I was still awake trying to ask Dr Google what they will be asking us. Not that it helped any way as we couldn’t find a list of questions anywhere ❓❓❓Not very helpful for ridiculously anxious people like me who like to be prepared for everything. This notebook (which I just had to find and get ready at for 4am to be prepared for a 10am call) has been with me to every appointment. The writing is messy and blurred from tears. Anybody but me would find it indecipherable but I take great comfort in knowing I have it and can refer to it when needed. It is like a comfort blanket and knowing I look over it to see what meetings we have had, what questions we have asked and what answers we have and have not received makes me feel like I am a better parent than I am.
The call came in literally as the clock ticked over to 10am, I was mid wee 😳 Appointments are never on time so I was sure this one would be the same. The woman was called Emma Gibson and she gave off good vibes if that makes sense. Pleasant to speak to, not too clinical and had a friendly tone to her voice.
So I made notes (shocking) in my little book about each question asked so that anyone reading this waiting for their triage appointment can have a rough guideline to take the anxiety off a little. Each lead to other questions so this will not be a comprehensive list.
When did you first notice something was wrong? Holy shit she went straight in there with the bullet to the head! 😔🔫 As many of you will know already it took a long time for us to openly admit something was wrong with our child and it wasn’t until William was after 2 that we started writing about him publicly on Facebook to share our journey. It wasn’t that we were ashamed, we were frightened, not only thing things William would struggle with but of the stigma that comes with having a learning disability.
Who is in your household?
Is Dave Williams dad? I had to kick Dave to make sure he didn’t pull his usual not funny trick of saying ‘as far as I’m aware’ or ‘Yes or the milkman’s’ Honestly these jokes are almost as old as the one were he says he’s shagging my sister 🙄
Do you both work? Who’s the main breadwinner? What does he do for a living? Insert idle chit chat here about how the current pandemic is effecting him at work.
Has there been any history of trauma or domestic violence that may have impacted William? I had just kick Dave but that doesn’t count… No of course not 😇
Is there a history of autism in our family?
Is there a history of mental health issues? I explained about my lengthy battle with postnatal depression and anxiety and the medication I had been on and for how long. I’m not ashamed of it, in fact i’m proud. Although it took me a long time to seek help, I eventually did and came out the other side. Some people don’t.
What other agencies are involved with William? We then discussed things his paediatrician had put forward; blood testing and genetics testing and our next appointment. We discussed Lisa who liaises with the nursery in regards to his education.
Are social services involved? Eh? No!
What was my pregnancy like? We discussed how high risk it was, the lengthy induction, having an assisted labour, gestational diabetes, being in hospital longer than expected.
Is William on any medication?
Did you bond with William? Yes. No. Maybe? He didn’t really bond with me? He’s indifferent.
What was he like in meeting his milestones? Insert big head joke here and not sitting up until 10 months.
What were his first words? 🤐
What does him playing look like?
Does he make eye contact? If he does can he maintain it or is it fleeting?
Does he respond to his own name?
Does he indicate hisemotions or pain with facial expressions? Let me tell you something… Justin Bonomo and Erik Seidel are amateurs compared to William when it comes to having a good poker face. I’ve let me nerd slip out again there. Justin and Erik are two of the most famous poker players in the world.
How does he behave with other kids at nursery?
Are there any children outside of nursery that he engages with?
What kind of support does he receive at nursery?
Am I OK to contact the nursery?
Does William recognise other peoples emotions?
What are Williams meltdowns like? Like a tornado ripping through my living room. Like stepping into the ring with Conor Mcgregor. Like trying to hold onto an oiled up contortionist.
What sensory issues does William suffer with?
What are the main indicators he is about to have a meltdown?
What are his eating habits like other than during meltdowns?
Does he show any signs of anxiety?
What is his sleep pattern like?
Are there any things he cant do in regards to his motor skills? Jump. Hop. Point. Wave. Clap.
What is he like with danger? or strangers? No sense of danger or recognition between familiar adults and strangers. That was it! Interrogation over.
She was happy that William had been referred to the right place and he will remain on the waiting list 🎉🎉🎉 Relief swept over me. Tears ran down my face.
What happens next?
A letter confirming this will be sent to all parties involved. A team of specialised autism nurses will be on hand during our wait to answer any questions we may have.
The wait is currently between 2 and 2 and a half years. We will not be contacted until William is at the top of the list. To put things into number which you know I enjoy, there are over 900 people in front of him in Hull alone. In order to them to bring their waiting time down they must assess a minimum of 8 people per week and I know a company called Healios have stepped in to alleviate some of the pressure but they can’t carry out all the assessments as they conduct theirs via video link and not all of those waiting would benefit from such an assessment. The actual assessment is called ADOS (Autism Diagnostic Observation Schedule) and it is currently the standardised diagnostic tool for diagnosing ASD. The ADOS process involves observations under controlled circumstances that other professionals are able to replicate. Only trained professionals can administer the ADOS diagnostic screening, but it eliminates some of the differences of opinion otherwise possible when two different experts provide a diagnosis without following the same consensus in regards to what they should be looking for. Using the one set of clear guideline minimises the margin for misdiagnosis and errors.
When it is Williams turn for his assessment he will already be finishing his first term of his second year at school 📚 That is if they continue seeing people at their current rate.
November/December 2022 – What a brilliant Christmas gift that will be for us that year 🎄🎁
As many of you may have read previously William has been at the Hull Eye Hospital a few times to check his eyesight.
When children lack eye contact, depth perception and hand eye coordination the word autism doesn’t automatically spring to mind. Doctors and healthcare professionals will try to rule out any other issues and William’s visit to the Eye Hospital was one of his first exploratory check ups.
I want to tell you about the Hull Eye Hospital and how brilliant they have been with us. The staff are all so welcoming and were knowledgeable on how to deal with a child like William, they had a slew of highly engaging toys in order to try and get him to look in the right directions so they could look at his eyes. The waiting room for children however leaves a lot to be desired which is a big reason for my post but we will get to that. They make the most of the area they have and fill it with toys and books and sometimes very noisy children waiting for theirs or their siblings appointments. This atmosphere for children like William isn’t ideal but it is still much better than most places offer.
Hospital Chief Finance Officer, Lee Bond, is going to be doing something that some of us only dream about… well in my case have nightmares about, exercise!!! To be more precise he is planning on running the London Marathon, that’s 26.22 miles. Unless my math is exceptionally wrong (a high possibility) that works out on average if you were to walk it 52,440 steps
His goal is to raise £10,000. This will enable the opening of a sensory room for children with additional needs attending the Eye Hospital at Hull Royal Infirmary. The marathon is 5 months away (granted it has been postponed as should have been April I believe) they are only 59% towards the target which I’m hopefully can change quickly in the coming months.
For us as his parents any appointment brings upon anxiety and irrational thoughts. ‘What if he’s blind?’ ‘How will he handle wearing glasses?’ Etc etc… however as you are probably aware William’s eyesight is fine although he is due another check up before he can be discharged.If it brings anxiety out in us can you imagine how the child feels? An unknown clinical place, strangers and odd smells, waiting around without your usual security blankets (William’s are currently our metal egg poacher, his changing mat or the dog) Imagine not understanding why you are in this odd place or why people are trying to force eye contact upon you when you don’t want it and never have. Waving pictures your face and holding you still.
A sensory room could lessen the trauma for patients like William. There are multiple types of sensory rooms however the main focus is to help children feel comfortable and calm, explore in a safe environment and engage childrens sense. I think we could all use one in our workplaces or even right now in our ‘home offices’ also known in our house as a baby changing table next to a window.
Please think about any savings you have made whilst we have been on lockdown and try to dig deep to support such a wonderful cause that will help so many! So I implore you, please spare anything you can and use the link below to donate. X
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.
Gavin Williamson our current Secretary of State for Education has made a ‘temporary’ amendment in regards to EHCPs. In my basic understanding an EHCP is a document which outlines the needs a child has in regards to their education and the local authority must adhere to it.
This amendment in laments terms basically means that EHCPs are now pretty much null and void. It’s completely understandable that the government would do something like this to protect themselves in such unprecedented times.
Most parents will understand this amendment as it’s not reasonably possible for an EHCP to be followed to the letter when schools are closed to the majority and social distancing needs to be enforced.
As you can imagine, me being the neurotic mess I am immediately panicked… William doesn’t have his in place yet, what if we can’t get one? He can’t get into a school that will meet his needs. He will fall further and further behind… the whirlwind in my mind went on and on 🌪
I reached out to Lisa who is the SENCO for early years to find out if and how this would affect us. Luckily new applications are still being accepted which has put my mind at ease (a little) as without one we can not apply to go to our school of choice which we are almost agreed upon. 🤣
Our PCP meeting is still due to take place over email or Skype or in some other technological way 👩💻 which is brilliant as we can get the ball rolling despite the current situation.
My main worry is the ‘temporary’ part of this announcement. When it’s safe to leave the house and get back to what will be put new normal, will EHCPs be enforceable again? Or will there be another reason to suspend them.
I worry about what’s going to happen in the future for the children with special needs. The world is only just starting to understand ASD and I worry this will set us as parents of these children back in our fight to get out children the best possible care.
William himself has had some amazing days recently. He’s spent a lot of time in the garden and engaging with our neighbours especially when food is involved 🍲 honestly he’s like a little zombie trying to get brains 🧟♂️
After the good days there is always a few bad. He’s not eating like he normally does. He doesn’t want to spend time with me… which is understandable but he doesn’t even want to spend time with Rusty 🐕 which is almost unheard of.
The nights he wont sleep and cant be settled are upon us. I feel so useless on these nights and could quite often sit and cry with him… pathetic I know.
Then the (disgusting) icing on the cake… this morning he was on top form and spread poo all over his room and himself. He was literally as happy as a pig in shit. 🐖 Then comes the trauma of having to hose him down and clean poo off his face and every other surface. It was like that scene in psycho. 🔪🚿
Anything in this world has people who are ‘For it’ and people who are ‘Against it’ this applies to everything… here are some easy ones Pineapple on pizza ✔ Milk in a coffee first ✔ Free TV licence for pensioners ✔
When it comes to certain things people often take a leap of faith in the hope that what they are routing for is for the overall good. Then you have those people who are unable to take that leap who will cling to the edge of cliff by the smallest bits of earth. Until very recently I have always ignored the ‘Anti-vaxxers’ but recently I have found the whole concept very engaging; forgive me if this gets a little ranty.
Jenny McCarthy; a world famous immunisation microbiologist has claimed… no wait. Sorry that isn’t what she is famous for. She is in fact famous for getting her cooch out for magazines. This obviously makes her thoroughly educated to be able to accurately dispute the effectiveness of vaccines. Well not the effectiveness so to speak but the side effects. She has continuously spread the disproven idea that vaccines cause autism. More specifically the MMR vaccine which coincidentally is given at the same age in which Autistic tendencies begin to show. Correlation does not imply causation! Her son Evan was diagnosed with Autism in 2005 which she categorically claims was caused by a vaccines. Experts have since claimed based on his symptoms that he was misdiagnosed and he actually has Landau Kleffner Syndrome. Something in which she vehemently disputes.
She has claimed on numerous talk shows that Chelation Therapy has helped her son recover from Autism?! There is no cure for Autism! It is not a disease! It is a disorder meaning an irregularity, disturbance, or interruption of normal functions. Chelation Therapy is used for patients with metal poisoning, certain vaccines contain mercury (not the same as fish) which causes for Autism 🙄 and C.T uses drugs to bind the metals in your body so that they are expelled through your body when you pee. C.T is dangerous and if not done correctly can result in death! 1 in 100 people in the UK have been diagnosed with Autism. If there was such a cure this would be going down and if vaccines causes autism this figure would be much higher. C.T comes with risks of kidney damage, heart failure or even death. I’m sorry but I would rather have an Autistic child than a dead child!
Lets take a moment to discuss Dr Andrew Wakefield Andy Wakefield. In 1998 he carried out a study of 12 children to try and establish a link between the MMR vaccine and Autism and published his findings in a medical journal called The Lancet. However his findings were completely speculative and had no fact based proof to back up his results and the results he did publish were embellished. To make matters a little more convoluted Wakefield had failed to disclose that he was receiving funding from lawyers that had been engaged by parents in lawsuits against vaccine-producing companies. It took up until 2010 for the The Lancet to publish a retraction which ended up as a small, anonymous paragraph hidden in the journal, on behalf of the editors. I suppose its like any article weather its in a local paper or a national one, online or on Youtube etc the big headline is what you remember. Not the small apology in the back. People never read the small print. Have a loan, 0% interest free… miss a payment and we take your soul 🔥🔥🔥 Wakefield falsifying his results will forever be one of the biggest and most serious medical frauds in history. Scientists who publish their studies have an ethical responsibility to ensure the highest standards of research, data collection, data analysis, data reporting, and interpretation of findings; there can be no compromises because any error, any deceit, can result in a lot of cases with severe health implications for patients or even death. In 2010 the British Medical Council banned Wakefield from practising medicine within the UK for repeated ethical lapses, including conducting invasive medical procedures on children that they did not need!!! Conveniently Wakefield has also applied for a patent on a design for singular vaccines to replace the MMR one… You know because pharmaceuticals in where the money is at! 💰💰💰
I can completely understand why parents of Autistic children can easily jump on this bandwagon. I still have moments in which I blame myself for Williams Autism; Could I have done something differently? Was is that 1 puff of a cigarette before I knew I was pregnant? Was my BMI too high to have a baby? was it because I had gestational diabetes? I know it isn’t any of these things but if I could just pick one to blame in those moments I blame myself then I think I would cling on to that because ‘Its just one of those things’ doesn’t really help placate most people and sometimes not even us.
I have done a lot of reading about celebrities and their very public views on vaccinations, I have never been someone who put much thought in to what celebrities endorse and what they don’t however I know there are millions of people out there that follow their celebrities like religious idols. Even if they are the Jenny McCarthys of this world.
Whilst searching for celebrity opinions I found that Kristen Bell (Veronica Mars/Gossip Girl) had some really wise words regarding her decision to vaccinate her children published in The Huffington Post back in 2015. ‘I couldn’t rely on word of mouth, facts were my friends and it’s been proven that vaccinations work and that enough for me to make my choice and let all other mothers know it is safe, It’s important and much bigger than emotions; it’s the truth.’ 🙌
Coronation Street recently ran a great story line about the potential ramifications of not vaccinating our children which was brilliant to see played out and hopefully opened up some eyes about not only what could happen to your own child but others around them.
Anyone that knows us personally will know I am and always have been a very opinionated person and in case you haven’t clicked on just yet, I have super strong opinions about vaccinations. I completely understand if you want to put your own child at risk. Actually scratch that, No parent should ever knowingly put their child at risk! By choosing not to vaccinate, you are not only putting your own child at risk but also those they come into contact with. You wouldn’t go and see a new born baby or elderly relative if you had the flu or a tummy bug but if you haven’t been vaccinated you could potentially be carrying something much much worse. In 2015 there were more than 140 thousand deaths from Measles worldwide. Most of these deaths were in children under 5 years of age. Would you want your child to be on of those statistics? or be the cause of someone else child being one? I know I would never forgive myself either way.
When the vaccine for Polio was released parents queued up for hours and hours to get one for their child… I imagine it been a bit like trying to get into ASDA during this lockdown.
The president of the USA advised his stance on vaccinations during his presidential campaign (and he still won😳) he didn’t actively stand against vaccinations but advises against full doses. Advocating for smaller doses over a longer period of time. To slightly misquote one of Greenday’s worst songs (but best albums) American idiots even swap bodily fluids with strangers to purposely get their children ill. Hello!!! HIV!!! Now 10% of parents in the USA skip certain vaccines and 1% don’t get any at all. Measles was once eradicated in the USA. In Minnesota more of the population in that one state has contracted measles than every other state in the USA combined. This state was heavily preyed upon by Andrew Wakefield and other Anti-Vaxx activities due the large amount of ethnic minority groups in the area. Wakefield preyed upon parents particularly within the Somali communities. Meeting privately with hundred of Somali parents and barring journalists and other medical professionals from attending. Since these meetings the rate for vaccinations within that community dropped from 92% to only 42% In 2014-2015 a Measles outbreak infected 147 people across seven states, Mexico and Canada. High school students were sent home because of infected classmates. One patient who was unknowingly infectious visited a hospital and exposed dozens of pregnant women and babies, including those in the neonatal intensive care unit. Another adult patient was hospitalised and on a breathing machine for three weeks.
Dr Bob Sears, famous for his dangerous views on vaccinations has been quoted saying “Vaccines don’t cause Autism except when they do” This man who should be an ethical man. He has taken the Hippocratic Oath – I will prevent disease whenever I can, for prevention is preferable to cure. He wrote ‘The Vaccines Book’ in which he recommend alternate Vaccination treatments and schedules despite there been no proof of this been effective. His book has brought him in a revenue of 20k a month since publication. That’s over 2 million quid!!!! He obviously has no ulterior motives… 🤑🤑🤑 Wanker 😡
Dave’s opinion – Yes he is allowed one occasionally. I feel vaccinations are a pivotal part of our healthcare system. I understand that there is such a thing as ‘herd immunity’ which helps protect those who can not get vaccinated for legitimate health reasons. Those who have weakened immune systems are unable to get certain types of vaccine and rely on ‘the herd’ to keep them alive. However this only works if 19 out of 20 people have been vaccinated. The ‘Wakefield’ study was proven to be falsified and the “good” doctor was disbarred however people still quote him as the pioneer that established a link between the MMR vaccine and Autism when there is in fact no link! He goes and does public speeches in America about it and spreads his lies putting more and more people at risk every single day.
There as two types of English language when it comes to scientists and doctors; the main English language and the medical English language. ‘There is no evidence of a link between vaccines and Autism” Read into that statement as you like but one scientist trying to explain it also said “There is no link between vaccines and humans not been able to jump off a cliff fly“
I feel celebrities shouldn’t be using their influence to sway people against vaccinating their kids. Jenny McCarthy is a fucking idiot. Will she be held accountable if someone who believed her bullshit let their kid catch something and die? Is that grounds for an involuntary manslaughter charge? Would she be accountable? I can not quote a pro-vaxxer like Marie but in my opinion everyone should be pro-vax. Why as a parent would you be against something that could save your child’s life?
Don’t get me wrong I’m the bad guy who takes William for all his injections and has to watch him become distressed and fight sand cry. We then have the delightful couple of days which he is out of sorts (aka possessed by the devil 👿) but… a couple of days is nothing in the grand scheme of things.
I would rather have a couple of bad days than no more days.
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)
There are a few words everyone single person in the world is fed up of hearing right now so I will just get them out of the way… * Coronavirus * Quarantine * Lockdown * Furlough
Not many people think like me but if you read my last post you will be aware that I rely on my job for a little break; a cheeky three day holiday in which I am not Mummy but I am Marie and Marie never has snot or other bodily fluids on her clothes, Marie very rarely has to speak to her colleagues in baby-talk and she can have a conversation which doesn’t end up getting hit or bitten. I love been a mom but I need that time to be Marie… Sometimes I forget who she is.
I know it was a risky thing to want but my goal was to stay in my office as long as possible, to maintain my routine (and in turn Williams) but also to keep hold of my sanity. I cried when I was told I would be needed to work from home, not just little tears but load messy ones. 😭
Dave tried really hard to let me work in peace in my little office/bedroom but it proved a little too difficult to forget I was there, especially during a particularly bad nappy explosion which I would have usually avoided had I been at work.
I made it through two shifts, The Wednesday of the first week and the Monday of the second. I’m not going to lie I probably did more work on those days that I would have done at the office because there were no distractions, Head phones on, blinds open and frantically typing away. On the Monday an email came out stating furloughs were on the cards and would be discussed with our line manager that day who would be in touch… Hours felt like days and then the call came. I was being furloughed and would not be allowed to work until further notice… this was indefinitely with no end date in sight. From a business perspective it makes perfect sense and I knew I would be one of the first on the list because lets face it. How much training can I do on my own in my bedroom. I had loads of material to work on but that isn’t a necessity. My complete access was revoked within 2 hours… ‘HELLO!!! I STILL WORK THERE!!!’ I can’t even sign into my laptop to write on here or play bloody solitaire. I can’t do anything… indefinitely. My anxiety kicked in; I didn’t finish my last presentation! would I ever finish it? It was really good, or I think it was but I can’t even check!
I’m still getting paid which is amazing as it means I can still provide for my little family but it does worry me that if this doesn’t end soon will all of us on furlough be first on the chopping block for redundancies… As HR put it: My role was identified as one in which the work can be absorbed by other areas of the business… what if they realise this can be done permanently? Now I have this little nagging feeling that I made a mistake when I changed my contract even though it made me eligible for my new role and I love my job but the little niggle is still there and i know it is completely irrational. I mean I know my work didn’t release this virus to get rid of me but that doesn’t stop my brain thinking all sorts 😷
William has been on top form since nursery closed its doors about three weeks ago. If you have read any of our previous blogs you will be well aware we are all slaves to his routine because he can not handle any changes. Plus lets add Chicken Pox to the mix because things aren’t difficult enough for him!!!
One of the first things that happens when something changes in his routine is that he stops eating and since food is such a high motivator for him that it is always a massive concern to us. He usually goes one or two days and will not eat a single thing, no matter how many of his favourite things we try to bribe him with. Popcorn – NO Cake – NO Sprouts – NO Chips – NO Mummy’s flesh – ALWAYS!
After a while he will start picking at small amounts. The dog loves these days as William will bring food to his mouth but then throw it behind him or just shove the full plate to the floor. Rusty eats so well on these days 🐕
The following day he will be ravenous and will demolish adult sized portions and then start on mine and Dave’s too. Occasionally the dogs and almost always any bits of paper he can get his hands (or should I say teeth) on. Unfortunately his poo doesn’t come gift wrapped like I so often joke.
Speaking of shit… Williams Neurodevelopmental paediatrician says its not uncommon for children with autism to have ‘lazy’ bowels which makes sense as he has never been regular but when it finally comes its usually uncontrollable and smeared all over his bedroom 💩 He doesn’t even care when he has been (the phrase happy as a pig in shit has never been so true 🐷) so it often goes unnoticed until the smell hits us 🤮 however there has been an exception recently… during a nappy change he crawled onto my lap for a cuddle or so i thought. He giggled and pooed all over me!!!
The other day on one of his no food days William decided he didn’t want to be anywhere near me all day. He stayed in the same spot on the sofa only moving to lift his arm for his juice. He didn’t sleep, he just laid there for hours staring into space. after a few hours he crawled on to my lap and curled up like one of those yappy little Yorkshire terrier type dogs. It was cute and I felt privileged he had come to me for some comfort. I welled up a little and stroked his hair and in return he threw up all over both of us and then for good measure all over the rug too 🤮 Every parent has to deal with messy incidents but William absolutely detests getting s bath or shower so it always results in more trauma for him… and us.
As time has passed he understands what no means but choose not to listen. He will stop what he’s doing, pretend to do something else and then decided to do it anyway. Last Thursday he was doing everything he usually knows not to, The things that could result in him getting hurt. He climbed on top of the TV stand and tried to pull the TV over… “William No!” He climbed the dining table and threw the contents to the floor… “William No!” He rattled all the kitchen cupboards. Purposefully spilt his drink on the floor. Fed the dog his breakfast. Threw the plate on the floor. Hit me when he realised he had no food left and then preceded to flip his table and chair. “No!” “No!” “No!” After a few hours I had to lock myself in the bathroom to get away from my 3 year old and have a cry… He cried the entire time I was in there whilst rattling the door handle #badmom I just needed a few minuets to let it out away from him and compose myself as he doesn’t understand when I’m upset or frustrated.
He knows I shouldn’t be at home, He knows he should be at nursery and he knows when he hasn’t seen Big Nanna. I don’t know if he will get used to this craziness and I don’t know if I want him to? I’m praying this ends soon. If he gets used to it things will be easier for us but then we will have the same battle on our hands if things get back to normal… not if! WHEN!! WHEN THINGS GET BACK TO NORMAL!
We call Big Nanna every day so he can hear her voice and she can hear him laugh and chunter…She sings round and round the garden to him and I do the actions. It adds a small amount of normality and routine to our long days but it makes me sad. He has a certain smile that he saves only for her and I miss seeing it. I miss seeing Nan’s face when he immediately leads her to the biscuit barrel or the mischief in his face when he finds both doilies in her living room and places them together (usually on the floor) The bond they have is so special and if i’m honest it makes me a little jealous sometimes but I wouldn’t change it for the world.
I worry about Williams development now more than ever as he has been showing slow but wonderful improvements recently after a lengthy period of no change or even regression and I panic in case this drastic change causes him to regress again and it was devastating last time but he is slowly edging into the up to twenty months bracket and I really want him to get there. No movement is better than moving backwards but only time will tell. Will this be over in time for his PCP meeting in May. They told us it was a really important meeting to get his EHCP in place ready to start applying for schools in winter. Will this happen? What if because of this virus we can’t have our meeting, meaning he doesn’t have an EHCP, meaning we can’t get him into a school that would be suitable for his needs? Lisa (early years team) called to check we were OK and asked me to call her if I needed anything. Why didn’t I ask her these questions? If there is no end in sight by middle of April I will call her. I also need to chase his blood tests and genetics testing as we never heard anything and we are unlikely to do so now. Also no follow up appointment with his Neurodevelopmental paediatrician. Its crazy because its not essential healthcare but it is to my boy! it is to me! I feel utterly selfish thinking about these things but if I don’t who will?
Postpartum depression and anxiety that 11-20% of women experience is not at all the same as the more commonly experienced ‘baby blues’ 80% of women experience for a few weeks.
Judy Dippel, Author of ‘Breaking the grip of Postpartum Depression: walk towards wellness with real facts, real stories and real god.’
I make it no secret that I am not a naturally maternal person and I work really hard to ensure I am the best Mom for William; the kind of Mom he needs me to be but I wont lie it often feels like i’m trying to roller-blade up a mountain ⛸.
It took me 18 months to admit I was struggling as people often referred to some of the feelings I had as ‘the baby blues’. It took me a long time having these thoughts and feelings building up for me to tell anyone and even then it was practically forced out of me in the most inappropriate way possible… A meeting at work 😳
Let me start from the beginning about my journey through trying to conceive, pregnancy, labour and beyond… We agreed it was time to start trying for a baby about a year before I fell pregnant. We quit smoking and tried to be healthier. I spoke to my doctor and agreed to come off my medication; I have a neurological disorder called Trigeminal Neuropathy and the medication I was on at the time was linked to birth defects so it wasn’t worth the risks. Every month my period came like clockwork ⏰ and every month we felt great loss as if we had lost something that wasn’t even there to start with. I’m not going to sugarcoat it but I think we both blamed ourselves. Why wasn’t my eggs working? am I infertile? I know Dave felt very similar about his swimmers too. This year of trying was constantly talking about how perfect our child would be and all the things we were looking forward to. Monday 17th June 2016; I felt pregnant but had done every month so wasn’t holding out too much hope. I didn’t even wait for Dave to get home before I peed on the stick but there it was… that extra line we had been praying for🤰🏻
Pregnancy wasn’t easy; I had several factors which placed me on the high risk list and an induction was discussed from almost day one… There flew my plans of a drug free natural birth🕊 As the weeks ticked by more and more things went wrong leading to more appointments, more medication and more worry. I left work officially on February 3rd 2017 to take my remaining leave before my maternity kicked in on the 6th March. We nested and cleaned and prepared the house for a whole tribe of babies even though we just had the one – Both of our dads are twins (not together obviously!) so at every scan I asked them to check there wasn’t another baby hiding 👶👶 1st of March I had my final consultant appointment. They needed to induce me asap to get William or Barry as we had nicknamed him (his uncle Jim still calls him Baz 3 years later) The consultants exact words were “when would you like to have your baby?” OMG! Obviously since they had driven it in to us how important it was for him to be out asap we said as soon as possible, We were booked in for Tuesday 7th March 2017. Our baby would be here in a week. 😊
Only that wasn’t quite the case… your consultant tells you what he thinks should happen and why but he doesn’t tell you if it is possible or what kind of state the wards are in. Thanks very much Fatima Allam for building your birthing suite for future labours but for me at this point it was a massive fucking inconvenience! The day arrives and we were told to bring our hospital bag… Our appointment was 6pm and no one came to us until nearly 7:30pm. We didn’t need our hospital bag; they wanted to try something called a Foley Bulb induction. I wont go into the gory details but it didn’t work and we were sent home at 2am and told to come back… with our bag at 9:30am the following morning. They wanted to try the ‘Propess’ Pessary. 24 hours under close observation. Nothing happened and i’m sat on the Maple ward with other Mothers popping out their kids left right and center despite the fact I have been there longer! How fucking inconsiderate of them! Then came the tablet pessaries and the long wait for my waters to be broken. Not to mention the numerous stretch and sweeps (Dave kept calling these scratch and sniffs 🤮) It got to the point that I didn’t believe the labour ward actually existed until my 8th day of trying to be induced… My mother had visited on day 7 and like the tornado she can be (to which I am very grateful)told them exactly how badly this was as no one was telling us anything and we were both just a wreck. It was so important for them to get him here quickly but no one was rushing. I was scared something would happen to William or to me. I wrote a letter in case i wasn’t around. One to Dave and one to William; you know with the usual. Why I fell in love with Dave and what I needed from him in my absence. A bit dramatic I know but it was how I felt.
Then day 8 arrived and by 6:59pm so had William. Lots of pain, crying and a lot of help from the surgical team but he was here. By the time I was moved to a ward it was time for Dave to go home as they didn’t let dads stay back then… I was not ready for this. This tiny little bundle cried for what felt like all night and I was in a shared room. The anxiety of this crippled me. I was awake all night holding him telling him every family member I could remember and their personality traits.
The love I felt for William was instant from the moment we fell pregnant but my life was changing so much, I wasn’t me anymore or the person I thought I had been. Work had been my life since I was 17. I had worked full time and made my way up and honestly loved my job, I would stay late, arrive early and log in from home. All my friends were there or so I thought. I always remember a conversation with my sister about how people had vanished from her life when she had my niece. I wouldn’t happen to me (insert eye roll here 🙄) But she was right… I hate it when that happens. People I spent every day with for years and nights out, boozy lunches were suddenly too busy to text. I’m not going to lie it fucking hurt and I was lonely. There was something about Williams development that just didn’t sit right. It was OK for me to think it but if anyone mentioned anything I would become defensive and justify his delays. Thinking it was one thing but admitting it is something very different. I hated being on maternity leave, I was itching to get back to work and some normality. Some adult conversation. Then in the November I get the call… my office is closing. My job is at risk. AGAIN! It didn’t just effect me but my mum also and so many others. I didn’t want redundancy. I had just had a baby. I needed flexible hours and a steady reliable income. We were saved! the company I work for now was bringing us in house. I felt so relieved and happy but there was just something that made me uneasy. A deep seeded worry that I couldn’t quite shake off. I returned to work in January 2019 and felt so out of my depth doing just 3 days but it wasn’t possible to do any more because we had no childcare or the funds to send him to nursery at that point. I couldn’t remember anything and there was no refresher training or brief about what had happened in the last year. Nothing. Everyone was trying to prepare for the move and I felt lost. What was once my world was now somewhere I went where hardly anyone knew me so I had no one to talk to. No DSE equipment for my bad back as someone had taken it whilst I was on maternity and lets face it, the company was closing us down. It wasn’t going to buy me equipment for the last 2 months.
My last day at my office was emotional; it felt like the end of a massive part of my life. My mom worked in the same building so on bad days I could go and vent or cry to her but not anymore. Hell i would even miss the mold on the canteen wall, the windows that wouldn’t open and the suspicious stains on the carpet. The new office was beautiful, so modern and clean. It was only 4 years old and made me feel proud to work in a building like that but it wasn’t home; Its crazy because there were people there in the same situation as me and I just plastered on a smile… ‘this is great’ ‘yes William is beautiful’ ‘no don’t worry i’m fine’
Fast forward a year ⏩⏩⏩ A year of denial about how I was feeling, Fake it till you make it… I was under performing in my job, I couldn’t focus on almost anything so I wasn’t functioning at anything particularly well and have so many dark thoughts running around my head… Would William be better off without me? Am I the one that has caused whatever the problem is with him? how can I do my job in 3 days? Why don’t my team respect me? Why am I so lonely? Why doesn’t my child love me? why do my colleagues seem to single me out? What if our landlord follows through with his threat to sell the house? What will we do if we end up homeless? What if they take William away from me because it’s my fault? What if something bad happens to Dave? what about Big Nanna? would William be better without me? would he? Have you ever been taken into an office and told your shit at your job? actually no that’s not what was said but its what it felt like at the time. I was forced in a little cloakroom style office to face some things… some things I hadn’t spoken about before. And with each irrational sentence that I sobbed, I felt a tiny bit lighter. That night my boss called me at home to make sure I had told Dave how I felt and that I was going to the doctors… Yes and yes.✔✔
I didn’t know what to say to the doctor and spent a fair amount of time just sobbing and telling him I didn’t know what was wrong with me but he did… Postnatal depression and anxiety. Too far gone to see a councillor. That wasn’t what was said but he recommended drugs for a quicker effect; I knew I needed to say yes as I had to do something as soon as possible to prepare myself not only to be able to function in day to day life again but for the fight I would shortly have for William. I ended up on anti-anxiety medication and anti-depressants and it hasn’t been an easy road as they make you feel that you’re OK when your not so when I first broached the idea of coming off them I though I was ready but was given some poor advice by another doctor and took a deep crash back to despair.
That was over a year ago now and I’ve slowly gotten to a place where it is time to start coming off the tablets. I haven’t had to take any anti-anxiety tablet in a long time. Work is work; I am in a new job that I thoroughly enjoy and I am away from aspects that had helped me spiral but it isn’t my life. It is just a small part of it; Its my little 3 day break from my real life. I go to work on a Monday (my favourite day of the week) and my last shift is on the Wednesday and then I switch off and i’m done… well at least more than I ever was previously. We have moved house to one that isn’t falling down around us and it’s more of a home to us than the other one had been in 7 years and as you are aware we have accepted and admitted that William has additional needs and delays and things have been put into place for William to help his development and I am fighting tooth and nail to ensure he gets the support he needs going forwards. I am now a ‘Momma Bear’ and can be fiercely protective about William and his needs rather than sticking my head in the sand. I am nearly off the antidepressants all together… 1 half dose twice a week, then going down to once a week and then i’m done.
I’m not sure why I felt the need to get this down in writing. It’s not really part of our ‘Journey onto the spectrum’ but it was a big part of leading up to this point. Its a part of me.