I want to talk about shame and I don’t mean the shame I have spoken about previously in which we blamed ourselves or where we weren’t willing to admit anything was wrong. The kind of shame I want to talk about today is the type others try to inflict upon you for the decisions you make.
And in what I can only describe as in true Cersei Lannister style I am not sorry!
When you open yourself up like we have you kind of expect everyone to have an opinion and believe me the internet isn’t full of sunshine and roses. Its a place were someone can remain annonymous, write hurtful things and suffer no reprecussions.
Our first instance was within three months of setting up the blog, we had no social pages other than our personal ones in which we shared the blog to our friends and family, we were never the type of people to add strangers on our accounts. Within those months things went really well and we gained a few followers, a few subscribes and it felt like we made difference by sharing our story. It was maybe December/January time when I recieved a message. ‘nobody cares’ ‘Maybe you arent trying hard enough to teach him’ ‘you feel guilty coz it id your fault’ (actually spelt coz, are we 12 and limited to characters again?)
By this time we had grown stronger in our acceptance and I deleted it and haven’t given it a seconds thought until now but could you imagine if that was to someone more fragile than us? Someone looking for reassurance or hell even guidance!
Fast forward to May and the wonderful Beth (Check her out here) designed a logo for our blog and our newly established social media pages. A lady commented to tell me about my use of the puzzle piece and how it is a hate symbol for autistic people. I appreciated being educated but I also felt like I was being told off. Like I was doing wrong so far into our journey and I should know better. The puzzle piece implies that they don’t fit in, that there is something missing or that they are a puzzle to be solved. Due to the juvenile type of picture commonly used it can also lead people to believe it is something that only effects children. Like its a bad haircut they grow out of.
I absolutely love the puzzle piece symbols which is why it was incorporated into our logo, I see it as a beacon of hope for William. He is a piece of this world that fits perfectly but we just need to find the right place for him. Its not about changing him but how the world sees people like him. To try and make it a better place not only for our autistic children to grow up into but for all children and that message I can imagine is very important to a lot of people.
The infinity symbol is supposed to represent math and a love of numbers, something shared by many people on the autism spectrum (I do think this statement is a massive sweeping generalisation) but not all, so far William has no association with math of any kind so to me this one isn’t as personal to us as the puzzle piece. It is also used signify inclusiveness and the integration of people with autism into general society, since there is no beginning or end to the sign. I just don’t feel anything towards it like I do the puzzle piece. I look at it and think of tattoos loads of people in their 20s and 30s now regret (mines a tramp stamp 🤣)but I don’t look at it and feel hope, I feel nothing.
And now I bring us to present day….
As a family we have always been open and honest which is why it hit us hard when we struggled to open up about William’s difficulties because it was so unlike us. There are pictures and stories about me online that I have no shame in sharing and same goes for David. I have always been willing to share my dark days, my good days and days in which I’m just an absolute airhead and say or do something that is just inconceivable for someone of my age and education.
for example here is me in a pair of pyjamas (which at the time I felt were wholly acceptable as an adult) trying to frighten Dave by being a bear 🐻 GRRR
I love and hate twitter with equal measure. I shared an anecdote about how our little boy laughs uncontrollably if you tell him to stop touching his diddle, this was accompanied with a beautiful little gif (check it out on our Facebook page here) Twitter always opens up the floor for trolls and/or unsolicited advice and 2 men decided to tell me that I should not post these kinds of things because I would damage him when he is older, because facial recognition is soo good now that he will be identified putting a risk to any future employment… Let me tell you something, there are pictures of my passed out drunk in a field at 14 years old and I still have a good job. There are pictures of Dave in drag (as a work event for one of his Saturday jobs?) and he too has a very good job. When William is able, I expect him to take over our pages and continue to share stories of his life just like we have our own for years with Piczo sites, Myspace, Beebo, Facebook, Twitter, Instagram and many others that have been and gone.
I want him to continue to tell the world and show them how he has grown and how he navigates life, the good and the bad. Funny anecdotes a plenty! If he decides he doesn’t want to or wants it deleted then I am happy with that too.
In the words of Akon ‘I am so Lonely’ or in words of puppet Kim Jong Il ‘I’m So RonerySo ronery. So ronery and sadry arone’
Having a baby is very misleading; when the baby is born everyone wants to know you. they visit, bring gifts and make promises they don’t intend to keep. As your baby gets older people start to fade away and are only occasionally spotted at birthdays or christmas time. People stop asking you if you want to meet up for a coffee or lunch because you would have to bring the baby or because you have said no a few times due to breastfeeding or lack of childcare.
Your circle continuously gets smaller as your child gets bigger.
If your child has special needs this circle practically becomes a dot, a little bit like a reversed ripple.
I’m not sure why this happens but slowly even the people who had previously part of your lives now even fail to ask about your child on the rare occasions they speak to you. I’m not sure if its because they don’t know how to react when you say ‘Not good…’ or because they are scared the will say the wrong thing like referring to a meltdown as a tantrum or saying things like how all children do that and will grow out of it etc. I would accept things like that as I would happily share Williams story and experiences with everyone and educate people about ASD, GDD & SPD so that those parents that come after me have a slightly larger dot.
It’s a very lonely life as a parent of a special needs child. It becomes harder to spend time with your partner and you begin to realise why separation rates are higher for parents in our situation. Its hard to maintain that spark especially when you both work opposite shifts for childcare reasons and it can be near on impossible to get a sitter (not even mentioning COVID) due to William’s behavior which can be challenging to say the least.
Exhibit A. That isn’t chocolate! 🤮
I think its sad. Actually no, that’s isn’t right. I think it’s disappointing. I know it’s disappointing that we lose what we thought would be our forever circle. People who were strangers a year or two ago became those we confide in not because we upgraded or chose to leave people behind but because they understand that aching pit of despair we often feel.
I know when William goes to school we will meet parent in situations similar to ourselves and extend our circle. I’m not saying that we will bond with all his classmates parents but even one or two would be a bonus.
As always I’m not sure what my motivation was for this post but wanted other parents to know that it’s not just them and we are here for you to be part of your circles if you need us 😘
I said we would post as much as possible now we are both working and out of furlough, aiming to post once a week and unfortunately last week it just wasn’t possible. I would love to fib to you all and say I didn’t have time but to be honest I just didn’t have the emotional strength and need to pull myself through how I felt about the genetics results.
So first I’ve had my little pity party and it’s time to pull myself together – or at least that has been what I’ve told myself since the last post and I do feel a lot better, I needed to process and understand but unfortunately I was too quick to blame myself and wallow.
I thought I had gotten past the blame game but obviously it only takes one letter to put you right back there again, back in that pit of guilt and anger. Thankfully it didn’t take too long to crawl back out and I managed to do it naturally without having to fall back on the medication I once took for depression and anxiety. It shows how far I have grown in the last 18 months.
I know that there is nothing I could have done differently which would have stopped William having special needs.
I know also know that the additional material he has may not be the cause of his needs and delays.
It doesn’t matter that the additional material came from me, what matters is that anything more sinister has been ruled out.
I can hand on heart say that I love William more than life itself, not in spite of the challenges his needs bring but because of them. I think they make us as a family appreciate each other more. They make us look at the world in a different way and seek out understanding for other children like William.
God only give us what we can handle, its not always going to be easy but it is possible. He knew how hard we would fight for William and how much love we would have to give him. Its hard to have faith sometimes but I know my purpose is to nourish and love that little boy who I am honoured to call our son.
P.s William has his vaccinations today and tried to punch the nurse 💉🥊 but a cheeky trip to the polish bakery made it all better.
P.ss Vaccinations are also not to blame for Williams needs!
Males inherit the X chromosome from their mothers, the Y from their fathers.
Williams results from the genetics testing came today and its a bit of a mouthful but… there was a variation from the normal pattern wirh interstitial hemixygous copy number gain Xp22.33. The test states there is additional genetic material.
Chromosome 22 is the second smallest human chromosome (21 is the smallest) including more than 51 million DNA sectors (they’re in pairs) and represent between 1.5 and 2% of the total DNA in cells.
There is no defined link between this and autism but there are a few case studies referring to it and those with learning difficulties but not enough research has been carried out. Its is classed medically as having uncertain clinical significance.
If it has come back as nothing detected that would have been shit but manageable.
If something would have been detected on his Y chromosome I wouldn’t have blamed Dave but I am sat here now blaming myself. After all the X chromosome came from me.
Have I done this to him? To us? The paediatrician will be booking in a consultation to discuss the results in more detail and establish if further investigations are needed but now I’m terrified of what they will say… will further investigation point the finger at me even more?
I just feel like I’m back at the beginning of our journey, like all the progress we’ve made in our acceptance and grieving over a child we thought we would have hasn’t mattered and I’m back to looking at him and crying because this could all be down to me.
People often struggle to differentiate between a child with autism and a child who is being naughty.
As a parent who suffers with anxiety it is very difficult to go to certain places and deal with other people who don’t know William like we do.
Something as simple as a journey on a bus can set me into a tailspin, a small journey can lead to an argument due to the fact other passengers look at William as see what they deem as an ablebodied 3 year old in stroller taking up a space they feel someone else needs more. Not all disabilities are visible and what give you the right to assume!
A trip to a supermarket can lead to a full meltdown due to the hustle and bustle of different people, a different environment, bright lights and loud noises. One the rare occasions he will walk, he will often end up laid on floor and go floppy because he can’t handle the stimulation and lack of familiar surroundings and comfort. This is not a toddler having a tantrum because he can’t get sweets or doesn’t want to walk, its because he is in pain.
When we go to a restaurant, cafe or bar he will beeline for any food he can see, we will stop him before he takes it but it can lead to awkward conversations, dirty looks and whispered remarks. This isn’t because he isn’t fed at home or because he is rude. This is because food is such a high motivator for him and that the fact it doesn’t belong to him doesn’t even register.
I shouldn’t have to apologise for my son for being himself but I find it becomes a more frequent occurrence as time goes on. I shouldn’t have to explain why he is the way he is, there should be a wider understanding of the autism spectrum leading to acceptance.
I truly believe that autism awareness and understanding should be educated in schools so that future generations don’t make the same mistakes and assumptions. There are no definitive figures of those with autism as no record or register is kept but based on recent surveys 1 out of 100 has autism.
Think of the children in your child’s year at school, think of the children who you went to school with. I wish I had been more aware, more educated and a better person.
I want that for the future, for children like William and for parents like us who often feel we should apologise on behalf of our son when maybe, just maybe they should be apologising to us for their small mindedness.
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.