Its nights like these I really wish autism was a physical being so I could kick the shit out of it. I fucking hate you autism you son of a bitch!!!
Its 11:30pm and William is still awake. He is calm and comfortable watching TV in his room. Before anyone jumps on the too young to have a tv in his room please remember that the only thing that can soothe William is the wonderful invention that is BabyTV and even then that’s only works some of the time. Could you imagine my neighbours during his frequent 4am screaming fits without it?
A little while ago it was a completely different story. William had spent the last half an hour or more hitting himself. Believe me it felt like a fucking lifetime. He doesn’t have a massive amount of strength in his arms so one little slap wouldn’t necessarily hurt anyone but he continuously slaps his stomach or legs with both hands until they are red. It’s really difficult to watch and if I try to restrain him he will lash out and bite me or become even more upset. And believe me when I say this he has the strength of a pitbull in those jaws.
Its these moments in which I feel like a huge failure as a mother.
I have tried everything to pull him out of these self harming states but nothing works so I tend hover in the hall or in his room and try to distract him but often just watch him and cry.
It makes me feel like an absolute failure as a mother. I’m supposed to protect him when someone hurts him… what am I supposed to do when he hurts himself?
The worst thing about this evenings episode was the reason he was hurting himself, it was something as simple as needing a poo and then the discomfort of needing changing afterwards. This has never been a cause before tonight and he is on medication to help him go but for some reason tonight it was an issue for him.
I need someone to blame. Someone to shout at. I write often about accepting that we are not to blame for William having autism but it was easier when we did think it was us because it was easy to direct hate at ourselves.
Who do I hate now? The diagnosis we still don’t officially have? The genetics that he may have inherited? The fluke that may have caused it? God? I just need something or someone to be mad at! I just need a reason… Why?
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.
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.
It took me a long time to be able to tell people that our child has special needs, that our child has a developmental delay or that I look like shit because I was up until 4am just laid net to him on his bedroom floor. There is no shame in having a child with autism or a child that hasn’t hit their milestones when their peers have but there seems seems to be this stigma around it or at least that’s how we felt. I share many stories about William (with any one who will listen) and always explain he has additional needs but i’m not sure why. Why do people need to know? why do we as parents feel the need to explain their behaviours? Does Tom, Dick or Harry need to know? I suppose any parent in our position will tell you that everyone on the outside of this not so elite circle will tell you that they know a person with autism and they’re fine or they know someone who was non verbal and now they speak all the time etc etc etc… blah blah blah
Autism is a spectrum which means it covers a range of conditions so although autistic people share certain difficulties not one person who has autism is the same as another who has it. This means that they need different levels of support. Most people on the autism spectrum will learn and develop but only with the right sort of support which if you have read our previous posts can be difficult to get.
Today was a difficult day. It started at about 1am in which William was awake and having a full meltdown so I did my mental check list
Does his bum need changing?
Is he thirsty?
Is there something in his bed that he doesn’t like?
Does he want a cuddle?
Does he have a temperature?
At 1am the answer to all of these was a definite no. Number 2 resulted in him shoving his juice bottle into the side of my head and number 4 resulted in him hitting and biting me. I tried everything to calm him and by 4am we were laid on his bedroom floor just staring at each other. I couldn’t touch him and I wasn’t allowed to make any noise but he was at peace for the first time in hours so the back pain this morning is most definitely worth it.
Fast forward to a very sleep deprived mum this today and i’m not sure who has cried more. Me or William?
I understand this is a little bit of a ranty post but I just like to speak or when that’s not possible type and those that know us personally understand how angry I get when i’ve not slept 💤
William is currently in his room destroying everything that is still standing so i’m hoping he will soon tire himself out but that’s as likely as us winning the euromillions!
I refer to William quite often as a psychopath... when he hits me and laughs, then I tell him off so he fake cries and then laughs again... honestly he is such a character and a master manipulator; when Dave wakes up he will start crying. Dave runs in 'is he ok?' 'how long has he been like this?' he will scoop him up and cuddle him and William will just happily lay there with him. I can't help but feel a little jealous. They have a beautiful relationship and it stings a little that William doesn't have that kind of bond with me. He never hits Dave. Never bites him. Its it because I am the one that is here more? and his time with his Dad is more precious to him?
I sometimes think it may be because I struggled to bond as well with him straight away. As many of you are aware it took almost 2 years for me to admit and be diagnosed with postnatal depression. I loved William before he had even entered this world but struggled to adjust to such big changes in my life.
I went from working full time and my life been my job to been on maternity and finding out my office was shutting down. Then as time went on I started to realise William wasn't like children his age. It was tough and I think I hid it well for quite some time but did William pick up on this?
I think Family life is never what people picture it is. Movies, TV, books and social media put unrealistic expectations on people to have a perfect life and it has taken me a long time to realise there is no such thing! My living room is a mess and covered in dog hair and toddler snot so fuck you Mrs Hinch with your baby, dog and immaculate house! Although I do love the products she uses 🙂 Fuck you Kylie Jenner with your washboard abs 4 weeks after giving birth! In fact you know what, Fuck you Kevin Systrom & Mike Krieger for creating a platform in which pictures are worth a thousand words and every single word is a fucking lie.
Its been a tough few months recently, William seems to have regressed in his behaviours and seems to be lashing out at me more than usual. Not his dad just me… what did I do? He purposely scratched my face when he was frustrated which I’m not going to lie hurt like a motherfucker! the valuable lesson I have taken from this is to make sure I keep his nails short however cutting them is an awful and thankless task. Imagine if an octopus had claws on each tentacle and you had to avoid 7 of them whilst pinning the other one down, that’s what its like cutting his nails. Except that the octopus is screaming and biting to get away from you.
We have had a full on meltdown because I wouldn’t let him eat ‘another’ packet of Parma Violets. He went to find more and threw them all over the floor before throwing himself down too and refusing to get up… I tried to lift him but he’s very smart and makes himself go all floppy! considering developmentally he is less than a year old he does show some terrible two’s traits which we were told is a good sign (insert eye roll here 🙄)
His sleep is very disturbed now. From the moment we brought him home from the hospital he slept for 7pm until gone 10am and we had to wake him up not the other way round. People called us lucky. I don’t feel lucky anymore. He goes to his room at about 7 to 7.30pm and precedes to destroy his bedroom for a good hour or more. Draws opened and emptied, everything he can physically reach ends up on the floor and in pieces. Juice everywhere and if we are very ‘lucky’ he will often smear the contents of his nappy around the room. Three times in a week we’ve had to hose the boy down in the shower and disinfect his room and carpets ready for the next day… we go through a lot of sheets and a lot of wash powder. The washing machine is always on.
Speaking of hosing the boy down, its a 2 man job to bathe him. It sounds awful but it takes one of us to hold him down and the other to clean him. He needs to be held because he starts having a meltdown and can fall and hurt himself. To put it into context some days I feel that bathing a feral cat would be much easier and less painful for all three of us.
He has gotten to a stage now where he doesn’t want to be wearing pants… he will squirm and kick out when trying to put either a nappy or trousers on him and when they’re on he will walk round in circles trying to pull them off until he has succeeded. This was cute the first few times but once he peed all over my Nans DVD player it wasn’t! I thought about braces for him but he cant handle restrictive items so I’m not sure if that is the way forward? I suppose it is just going to be trial and error.
His follow up appointment at the eye hospital has come through to double check his vision. That’s in likes a week time, I am praying they don’t need to use the drops again as he couldn’t handle the disorientation last time and was a nightmare with his saucer like pupils 👀
His return to nursery after the holidays went just as expected. He clung to Dave for dear life despite often not wanting to come home. He has become accustomed to his non-routine over the Christmas break and didn’t want to be away from us. Dave had to spend an hour at nursery trying to calm him down.
I think the support available now from other parents in similar situations is amazing and one of the main reasons I started this blog. There are groups to arrange to meet up or if like me you are antisocial there are just groups to read other experiences and ask advice and support of those who have already been there. There isn’t enough support professionally which can leave people feeling alone and isolated, don’t get me wrong the nursery and Williams health visitor have been amazing but there doesn’t seem to be anyone else at this point in time which is daunting. It feels like it is one person referring to another to another and so on. It feels like they’re passing the book so to speak. I know this isn’t necessarily the case but so many people need to be involved before something happens that it feels like a never-ending circle.
We have an appointment a week for the next three weeks so hopefully we will take a step forward soon. Even if it’s just a baby step 👣
Autism speaks! William doesn’t, but true love needs no words…
But our son isn’t disabled…Have you ever been asked to admit something you aren’t quite ready for?
Today our Health Visitor came to go through DLA with us, This is to help us financially support William as he gets older and ensure all his needs are adequately met. I was warned that the forms are not pleasant. Well they are in fact 61 pages of hell!!! 😢
Is my son classed as disabled? I’ve only just plucked up the courage to tell people he has special needs, I know this is just me focusing on the wording but it stings to think that people will class him that way.
Getting hold of the form was hard. We went to the Wilson centre who told us to go to Jobcentre. We went to the Jobcentre to be told we needed PIP forms and to call a certain number… we don’t need PIP forms as he is under 16 but no we apparently needed PIP forms. WE DIDN’T!
There is no hiding from anything with the DLA form. Right from the beginning where it asks you to tell them what is wrong with your child and when did you notice? He has a severe developmental delay and I picked up on it from when he under a year old… It doesn’t give you the option to tell them you have your head in the sand for a year. That you were scared to admit it out loud.
There is then a full section about how he walks and gets around, which we aren’t allowed to fill in until he turns 3 so we will be doing it all again in March.
The rest of the section asks you to put time on things he can do or things you have to do for him and this is heartbreaking to fill in. I think the worst part was admitting how difficult bath times can be. He is fine sitting in water but as soon as we need to actually wash any part of him it becomes a traumatic experience. it can often be a 2 person job to bath him, one to hold him down so he doesnt hurt himself and one to wash him as adequately and quickly as possible.
We sent the form off and have a long wait ahead of us to find it if we are eligible, it can take 40 days for an initial answer and should his application be refused, we could send an appeal against their decision which will take more time.
Once again I can add this to the ever expanding list of things we are awaiting confirmation for…
Its been a tough few weeks recently, William seems to have regressed in his behaviours and seems to be lashing out at me more than usual. Not his dad just me… what did I do? He purposely scratched my face when he was frustrated which I’m not going to lie hurt like a motherfucker! the valuable lesson I have taken from this is to make sure I keep his nails short however cutting them is an awful and thankless task. Imagine if an octopus had claws on each tentacle and you had to avoid 7 of them whilst pinning the other one down, that’s what its like cutting his nails. Except that the octopus is screaming and biting to get away from you.
Today we had a full on meltdown because I wouldn’t let him eat ‘another’ packet of Parma Violets. He went to find more and threw them all over the floor before throwing himself down too and refusing to get up… I tried to lift him but he’s very smart and makes himself go all floppy! considering developmentally he is less than a year old he does show some terrible two traits which we were told is a good sign (insert eye roll here 🙄)
His sleep is very disturbed now. From the moment we brought him home from the hospital he slept for 7pm until gone 10am and we had to wake him up not the other way round. People called us lucky. I don’t feel lucky anymore. He goes to his room at about 7 to 7.30pm and precedes to destroy his bedroom for a good hour or more. Draws opened and emptied, everything he can physically reach ends up on the floor and in pieces. Juice everywhere and if we are very ‘lucky’ he will often smear the contents of his nappy around the room. Three times this week we’ve had to hose the boy down in the shower and disinfect his room and carpets ready for the next day… we go through a lot of sheets and a lot of wash powder. The washing machine is always on.
This is most likely our last post until after the Christmas holidays so I want to end it on a positive note!
William has an appointment with a paediatric neurodevelopmental specialist in January 2020… this confirmation is correct and came after Sarah⭐our amazing health visitor called our GP due to the last referral debacle.
We hope you all have a very merry christmas & a happy new year! 🎄🥂
I have always worshipped my Dad. I always wanted to gain his approval. It’s not that I didn’t already have it but I didn’t want to risk losing it. I waited until I was married before we started trying for a baby, You know the ‘right’ way.
I spent summers walking around garden centers with him as he picked out new plants for his pond, I spent nights listening to Jim Reeves and Johnny Cash and he used to let me stay up late unless I yawned… as soon as I yawned it was time for bed. This was a great trick I planned to use in the future.
My dad was the only boy out of three. He had an older sister and a twin sister. His eldest sister had a daughter, His twin had 2 daughters and he had Me and Helen. Helen then had my beautiful Niece. When we finally fell pregnant I was desperate for a boy. I had always wanted a little boy, I’m not sure why but deep down I think it was secretly for my dad. I tried to convince myself we were having a girl so that when our 21 week scan came round I wouldn’t be disappointed.
Now I don’t know if you have ever seen a baby scan at 21 weeks but they dont look anything like a baby. In fact William looked like an alien 👽 the print out we received was a close up of his terrifying little UFO face. As you can see he was cute and peanut shaped in his 12 week scan above and developed into E.T over the following 9 weeks. We didn’t even need to ask what sex he was because the little exhibitionist that he was had his legs open the entire time, every time the sonographer tried to obtain measurements of different areas he moved to once again show us his little todger. 😲
Holy shit we were having a boy! We were having a William Graham (my dad’s middle name and Dave’s dads first) and not an Alyson Rose. We immediately went shopping and purchased every blue baby grow we could find at Next, Matalan and Asda 💸
I called the Hobmans and dad had said he knew one of us would break the curse eventually 🙌🏻 I was so glad it was me.
I had visions of my dad taking him fishing, Dave taking him to watch Hull FC and eventually enrolling him a rugby club. 🏉
Throughout our journey so far I had avoided discussing it with my dad, I don’t know why. Would he blame me? would he treat William differently? would he even understand? My mum had always been the one to give him any updates before I shared anything publicly as I wasn’t ready for that conversation until it appeared in black & white and she asked me if I was telling him myself… and I did. I made that phone call and held it together long enough to tell him what we knew which even though it wasn’t alot, was still enough. I don’t remember the exact conversation but my dad, who has never been a man of many words simply said something along the lines of ‘Well it doesn’t matter does it. He’s happy and that’s all that matters and has two parents who are doing a great job’ conversation over. There was an immediate relief that rushed through me and I sat a cried. Not silent tears but loud, snotty, messy ones. I couldn’t even explain why I was crying and Dave just held me.
My dad has always had William few hours each week until I get home from work. They both seem to really enjoy this time together as they are always snuggled up when I get home as you can see below.
Tonight I took a leap and I went to see my dad and for the first time we spoke face to face through Williams next steps. He was so positive and encouraging. I’m not going lie, It took all my strength to hold it together and not cry.
I feel guilty about thinking he would be any different. He had never done anything that indicated he would be but in my head we were letting him down. Even though I am now 30 I still need him to be proud and tell me everything is ok.
He treats William the same way he always has because his difficulties don’t change anything. He is still our son and his grandson and if my mum voiced her suspicions to him like she did me then he probably knew William was struggling long before I could admit it to myself.
They can still go fishing 🎣 or do anything else a grandad does with their grandson; They can kick a football in the park, walk Rusty together (as long as William picks up the poop 💩) or as time goes on, go to the pub where my dad can hustle him at pool like he did with Dave and my Father in Law 🎱
I think a lot of my fears are down to my own insecurities which I then project onto others in an attempt to appear stronger than I actually am but I think as time ticks by I am getting better at being more open not only about Williams needs but also my own emotional ones.