Posted in Emotions

My own journey

8th January 2018

Look at this girl and analyse what you are seeing. A happy young mom holding her sleeping baby posing for her husband to take a photo… but that’s not whats really happening here.

It was my first day back at work after almost a year off. I woke up early, did my hair and make up to plaster over the cracks of how I was truly feeling.

I remember feeling relief as I left the house; like a huge weight was lifted off my shoulders. I could finally be away from William. My job has always been a constant in my life, since I was 17 so I felt like I was going back to do something I was really good at and since that wasn’t how I felt about being a mom, it made me really happy.

Only it wasn’t a relief, things had changed and people had left and I couldn’t focus on any one task. I was now part time and there weren’t enough hours in a day. I was constantly chasing my own tail. I remember coming home and faking excited to see William… I should have missed him. I held him close whilst he nodded off and had a little cry because ‘I missed him’ only I cried because I didnt. I cried for me. Not for him.

‘Take a picture Dave’ I don’t have many pictures of William and I over his first 2 years purely because I was alway the one behind the camera (This made post separation purging a nightmare🤣) I felt it was important to take a picture and prove that I was OK. That I was happy. Its silly isn’t it, that’s what this social media age has done to us. I think that’s why on here I try to be as honest and open as possible.

I’m not ashamed to say I was I was spiralling down a very dark hole and ended up at a stage I couldn’t see the light. I worried about my family dying when there was nothing wrong with them but the thought consumed me and kept me awake at night, I couldn’t cope with the changes is my career and found myself struggling to do the most simple of tasks but faking it with a smile and a cheery attitude. William was missing his milestones and I thought it was my fault, did I do something wrong during pregnancy? Was it because I didn’t love him enough? I began focusing on the fact that he might be taken away from me, social services would somehow get involved and take one look at me and know that it was my fault.

William was 18 months old and I had reached a point in which I felt like things would be better if I wasn’t around anymore by the time I sought help. I spoke to the doctor and just sobbed, I don’t know how he could possibly understand what I was saying but he listened and offered me help and I personally chose to be medicated, Sertraline to help with my depression and Propranolol for anxiety. It was hard, really hard and I came off them early and I wasn’t ready and soon spiraled back down that hole but I knew… I knew I wasn’t ready and went straight back to the doctor and this time when I thought I was ready, we slowly weaned off them and it worked.

For two years I have been off all medication and coping well. I have embraced that darkness I felt and can happily share my story. William is my word and the love I have for him was always there but was hidden by the storm clouds in my head. It didn’t flood in immediately but bit by bit as the clouds cleared, just like the sun does… it creeped through.

I know that Williams delays and medical issues are not my fault, that I did everything right when pregnant and that I loved him unconditionally from the moment I saw him on my scan and that even though I didn’t feel it, he did. He knew I loved him and still knows now.

There are days, even now in which I feel a darkness but speaking to people and being open about it really helps. This blog saved me as did all of you who read it, whether its ever post or just one. Each of you help me overcome every hurdle, every obstacle just by allowing me a platform to rant and cry about how I feel. Sometimes about myself or sometimes about the system that fails us.

Thank you and if anyone needs to talk please get in touch, with me, with a friend, a doctor. Don’t keep it to yourself. Darkness isn’t as lonely if you have someone by your side.🥰

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Posted in Emotions

The Fall Down

Autumn is my favourite seasons. The leaves change, Hull fair snacks are readily available 😋 Halloween 🎃, Bonfire night 🔥 and Christmas🎄 are right around the corner. I can almost smell the fire smoke in the air. It slowly becoming acceptable to put the heating on and to start wearing woolly tights and boots. The clocks will go back and dark cosy nights with candles, blankets and movies are just around the corner.

But then again, I hate this season in equal measures, some days it can’t decide if its summer still and its too hot but its raining and there is no physical way to be dressed appropriately and, in my opinion, it is cold and flu season…. Traditionally this falls between December and March but in my house, it always starts in the September.

In this new world in which we live, you can imagine the first thing that comes to mind when you start coughing and sneezing all over the place and genuinely looking like the walking dead 💀 I can handle being poorly, I don’t handle it well, but I handle it 😂 William being poorly is a whole different ball game. He can’t tell me what’s wrong, so it is a guessing game from the moment his behaviour changes until he develops full symptoms… is it tonsilitis? Stomach problems? The flu? The thought process gets pretty dark… what if its measles? Did I see spots? What if its Corona? Or Ebola? Or the plague? Or maybe, just maybe, it’s just a common cold.

I know my reasoning is pretty extreme, but my point is that it’s just never possible to tell what is causing the issue until the issue itself become apparent. William reacts to many situations by shutting down, this means he will withdraw from almost everything, he will barely eat and will try to sleep for avoidance. This could be because he doesn’t want to do something like leave the house or partake in a certain activity but could also be because I had to trim his nails, stopped him eating carpet fibres or didn’t let him smear the contents of his nappy. In some instance it’s because he doesn’t feel well. How do we know the difference? There is one simple answer… we don’t!

Its purely a guessing game… I have to evaluate everything that has happened prior to his shutdown and try to figure out. This means I have to be ultra-conscious of what happens on a day to basis and must be switched on at all times. This still means I have to try isolate what could be the problem and act appropriately, if in fact any action is necessary. On some occasions, no matter how much I analyse what has happened, I get it wrong and its simply because he is coming down with something but with no prevalent symptoms, it is impossible to know until it fully hits him.

I’m not going lie, sometimes it’s exhausting and sometimes when he cries, I cry but that’s ok because it doesn’t mean I’m a bad mom or a failure. It means I am trying my best and that’s all we as parents can hope for.

Despite this I do love Fall just not the downs that come with it 🍂 xx

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Posted in Emotions

Overcast

There is no manual for being a parent, there are help books and forums that can point you in the right direction, but what if your child has autism? Every single day is different and thing which have been successful in the past may not work out in the future.
If there was a manual for William, then I would give up everything I have for just an indication that I was doing something right.

Days like today are tough, I don’t know if it’s because I was already feeling a bit low, but the most insignificant thing tipped me over the edge… Orbeez. They are these tiny little beads that grow much bigger when in water and anyone who has used the will probably think it was the disposal that I found traumatising, but it wasn’t. We have used these on a fair few occasions and William has loved them with no incident, so much so that I had 50 thousand of the little fuckers to fill the bath with. He didn’t want to get in and lashed out at me, then he grabbed handfuls of them and threw them all over the bathroom but decided he did in fact want to get in and proceeded to fight me as I tried to remove his nappy. Once in the tub it went even further downhill as he started eating them… FUCK YOU PICA! I kept stopping him putting them in his mouth but, his other hand was ready with a fistful to shovel in and holding onto both was near on impossible. Getting him out the bath felt the same as he didn’t want to so flopped himself down and flopping about when I tried to grab a hold of him.
It felt like hours, just stopping him eating them (and failing) and trying to coax him out of the bath.

I wrapped him in a towel, and he snuggled into me, I sat there telling my four year old that I didn’t know what I was doing and that I would try to do better, that he deserves a better mom than me. It was all very dramatic even for my standards over a few non-toxic water beads. 🙄

I’m just having one of those days in which I feel like I am not good enough, these kind of days just creep up on you like a small grey cloud in the sky but before you even notice you are suddenly in a thunderstorm. That’s how my head feels today.  A little overcast and very dark ☁ but I am sure it will pass… just like the Orbeez.

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Posted in Emotions

Non-Starter

Let’s have a moment of silence for all those moms that expected this week to be something it isn’t…

Let’s think of those parents whose children are starting mainstream schools; those parents who are scared that this isn’t the right environment for their child and the parents who know it isn’t the right environment for their child but whose hands were forced.

Let’s think of the parents like myself whose children are yet to be allocated a suitable school. Whose children are getting left behind.

But let’s also celebrate the parents of all the four-year-olds out there who are happily and successfully starting their school journey. I will like their first day pictures on Facebook and comment about how adorable and grown up they look, but it’s tinged with sadness on my part.

We are back at the stage of jealousy for me, the green-eyed monster has reared its ugly head…
‘Why isn’t that my child?’
‘Why do that child’s parents get all these experiences that I once dreamed of?’
‘What did I do wrong, and they do right?’

Its stupid to think that way and usually its easy to swat away those thoughts like flies but right now its hard. I think that’s because its everywhere, social media, supermarkets, TV. There is no escape from what this week is. Its the start of the school year! Whoop de fucking whoop!

I wanted to photograph William in my street as me and H were outside my mom’s, I wanted to take photos with next doors youngest girl as she is starting secondary school, both in their slightly big but immaculate uniforms on their first days…but that isn’t happening.

I was naive and booked this week off work, I’m not so why as we were no closer to William securing a suitable setting but I guess I will still hopeful (or still had my head in the sand who knows 🤷‍♀️) I envisioned walking him to school and meeting other parents, talking about how big our kids are and how they’ve grown up so fast, how it was only yesterday when they were still in nappies and toddling around. I feel hard done to, and I know how bad that sounds as William is such a beautiful child and I wouldn’t change him for the world, but right now I feel robbed. Robbed of the firsts in which I expected. Every day with William is wonderful but as his peers are growing up and moving on, he just isn’t. We are in the same place we were 2 years ago, nursery, nappies, messy mealtimes… don’t get me wrong, I do know and fully appreciate how far he has come in those two years but this week its hard.

My week off will now be dedicated to decorating, continuing the journey of turning my house into a home, something to keep me busy and my mind occupied as we follow the same routine we have for years. I’m so grateful that William’s nursery said they would keep him as long as possible, but that journey should have naturally ended now, and it hasn’t.

So again, let’s just take a moment for those moms whose week isn’t as expected, those who instead feel angry about it, disappointed, upset. Those moms who may spend this morning crying into their coffee, writing angrily at a laptop or smiling through the heartache or in some cases all three.

All my love to all moms out there, no matter the situation you are in this week 😘 M. x

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Posted in Emotions

Panic! at the play date

I have come to realise that I’m a bit of an introvert, it sounds silly as I come on here and share so much information but in real life I shy away from people, I avoid activities and places that I am uncomfortable with, and I want to keep myself away from people who may judge me as a mother or William as a child. I am now at the point in which I don’t know if what I am doing is to protect myself or him. I want to tell you about my irrational fear of playdates…

I went on a playdate once, I mean there has been more than one over the years considering we have one every week minimum but this one is the most memorable, it much have been well over 2 years ago and I must say it was one of the most horrendous moments of my life.

William was definitely under the age of two as it wasn’t until his two-year check-up that I started to accept his potential problems.

Soft play! What kid doesn’t love soft play? My kid; that’s who!

I went with two friends from work who had both had their children around 5 months after I had William, please bear in mind that these two women, were women I felt comfortable with and had spent a lot of time with over the years, but I was dreading it, I remember being stood at the bus stop feeling so sick that I almost cancelled. I had already started noticing the stark differences between my child and children of his age and being around them and trying to sugar coat and deny Williams delays in development was exhausting and the more I had to do it, the less I was convincing myself.

Their children were beautiful but that wasn’t what bothered me, what bothered me was that they were so agile on their feet, they climbed and played independently, they communicated not only with each other but with their moms too whereas William just clung to me crying. He was barely walking independently and struggled to communicate non-verbally let alone with words.

The date didn’t end with soft play, we went for lunch. Their children played and independently ate and seemed to thoroughly enjoy themselves. William refused to eat and remained silent.

I felt like a failure, what had I done so that my child wasn’t like theirs? Was I not loving him enough? Was it because I was working and wasn’t with him all the time?

I didn’t reach out for another play date.
Was that wrong of me? I truly don’t know. I don’t actively seek out play dates with anyone, but sometimes they just happen.

We have play dates once a week with the same child and they go really well but they are often in the comfort of our home, William has familiar surroundings and can easily access his safe place. We have had a few outside the home and some have been great and others not so much, but it all depends on how William handles the situation or environment. We went into our local park once and it is truly beautiful in there, I don’t think I appreciate it enough since its on my doorstep but on this day it was busy, it was a half term of some sort and William was struggling, he wouldn’t walk and I didn’t have the stroller since we are still waiting his referral and he kept laying on the floor to the point I was peeling him off it like day old gum. Teens laughed at him and I felt myself getting more upset, William continued to shutdown… It was not a good play date, but we continue to have them, maybe it’s because I understand William more now than I did back then, I just don’t know. I don’t know why these playdates don’t bring on anxiety and sickness, but others do. Maybe it’s the unknown 🤷‍♀️

I guess I need to put myself and William out there more, but I don’t know if it is what is best, William doesn’t engage with other children at nursery so am I being unrealistic in trying to get him to engage with other children on his days off, is it fair on him? But then am I just saying that because the memory of how bad of a mother I felt back then is impacting my decisions now?

How silly is it that something so simple as meeting other parents and kids can make me feel so anxious that I am physically sick? How do I get passed this? Do I even need to?

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Posted in Emotions

Helter-Skelter

I think now is the time to talk about the past six months, this is not going to be a William centred post so if you want to tune out now that is fine. This is about the fight between the two sides of me. The side that six months ago was broken and wanted to curl up and die and then the side of me that needed to be as strong as two parents combined.

As most people will most likely agree with; heartbreak is one of the worst pains you can go through, you can’t take paracetamol to take away the pain, as only time can do that, but even though you feel time is all you have, you also feel that it isn’t on your side.

It may seem dramatic, but I felt like I was dying. Like my heart would not keep beating and I felt ok with that. That the pain would go if that happened.

Then there was a side of me that needed to be productive, I needed to get the house cleaner than it had ever been before, make sure my finances were in order, I needed to make sure William’s routines were protected, that he was comfortable and was not hurting like I was. I went into what can only be described as Stepford mom mode.
Between William waking up in a morning and going to sleep on the night, I was perfection; cooking cleaning, messy play and all the things in between. Smiling until my face hurt… ‘fake it until you make it’ so to speak.

Bedtime would roll around and then it was time to remove the mask, time to have my cry about all the thoughts I had pushed aside during the day, time to be broken.

The part of me that belonged in Stepford continued to make what I felt were the right decisions regarding him and tried my hardest to include his dad in these also.
The other part of me that was responsible for me, made some pretty questionable decisions and its now time to snap out of it but before I can do that, I needed to admit that I hadn’t been looking after my own health both mental and physical as well as I should have been.
I thought I would fall apart much more than I did, that I wouldn’t be able to go on but i’m stronger, healthier and much wiser. Divorce was never something I believed in, naive; I know, but now I am looking forward to starting the next chapter of my life. I am looking forward to finding out what is out there for a fat, working, single mom who may or may not have trust issues for me 🤣.

I have had a brilliant support network around me but only I could pull myself together and get off this helter-skelter slide and stand up tall again, albeit a little wobbly but here I am standing and ready to embark on my next adventure and new challenges
Speaking of which during May I have decided to partake in the 100 miles in May fundraiser to help raise money for the mental health charity Mind, I am asking that if you can spare anything, please donate as all funds go straight to the charity and its such a wonderful cause… https://www.facebook.com/donate/759292808292224/

Follow this link to donate to the Facebook fundraiser 😊

Posted in autism and covid19, Emotions

How do you know if you are doing the right thing?

As a parent this is something, we always ask ourselves until our child reaches an age in which their own decisions can be trusted. As a parent of a child with special needs not only do you question your choices but you over analyse every decision you are forced to make but what do you do when that spills out into your own life? When the simplest of decisions can be agonising because you try to predict every possible outcome which proves impossible and life just becomes too overwhelming. When every decision comes back to haunt you?

The pressures of being a single parent to child with additional needs is immense, every choice reflects upon your child from simple things like buying a different brand of chicken nuggets by mistake or choosing the wrong school. They both seem like such opposite ends of the scale, but both have a massive impact on Williams life and the responsibility of chicken nuggets is a big one on its own without the other factors.

What if they stop making his chicken nuggets, when is the right time to introduce new chicken nuggets? I am aware it sounds crazy, but I need to think of these things and try to find a solution before they happen.

Sometimes things do happen in which there was no way you could plan ahead for. Somethings happen and take you so much by surprise that you do not know how you will recover or if you ever will but in some circumstances you thrive.

How do you deal with those situations? I feel like I have become more guarded. I feel like I have to step up and become super mom, I feel like there is a constant battle to ensure William has the best support, the best family, the right environment and so on… I don’t know if that’s a natural part of being a parent, a single parent or a special needs parent but it’s exhausting.
I am exhausted! It so hard to maintain a good balance between being mommy and being Marie and I feel like I am losing myself. It sounds daft because you don’t get a break from being a parent, it’s not a job; it’s a privilege. You don’t get sick days no matter how poorly you are or how much pain you are in, being a parent is just who you are on a fundamental level. With this pandemic its difficult to find the time to stop and take a breath. It’s not as if William can go to his Nanna and Grandad’s so that I can…🥁… have a nap. (not very rock and roll of me I know)
It’s those kinds of things that I think we all took for granted, I don’t think any of us really appreciated how much we benefited from the everyday interactions we had with our family and friends.

Posted in Brief updates, Emotions

Single parent

Did you know there are around 1.8 million single parents in the UK – they make up nearly a quarter of families with dependent children. 1.62 million of these are women. I never really thought about this until it happened to us.

I could lie to you all and say we have had an easy ride of things recently but I think you probably know that’s not the case. This is a big adjustment period for me and more importantly for William.

My main focus is to continue to ensure William has a good solid routine in place which is pivotal to him. He is keeping me extremely busy as he seems to be struggling with this huge change in his life, bed times and mornings are now only ever with me and I don’t think he enjoys them very much. He fights and kicks me when I try to change his clothes, runs away from me and screams but we get it done.

We take the dog for nice little walks (well he walks us🐕‍🦺) which William seems to really enjoy even though he is in the comfort of his stroller and flat of refuses to do any walking. I’m tempted to stay at home and just tie the dog to the stroller and let him pull it arpund the street like a sled 🛷 but I think that would constitute as child cruelty or animal cruelty. Maybe neglect? So I best continue to go with them 🤣

We are eating healthier (as healthy as a boy thats half chicken nugget will eat anyway🍗) and trying to turn this into a positive thing for our lives and look to our future.

We’ve had meltdowns and shutdowns (from both of us😭) but we’ve come through it and these are getting less and less frequent on both parts. He is slowly adjusting to his new routine and I can now see the light at the end of the tunnel but its hard. Harder than it ever was before but we are doing ok. In fact we are more than ok, we aren’t just surviving like I thought we would. We are actually living thanks to our amazing support network of family and friends.

We can not thank everyone enough for reaching out to us, the doorstep visits, dropping off shopping and just being there for us. It means more than you all could ever know 😘 Much love M x

Posted in Emotions

That’s all folks

It is with an exceptionally heavy and broken heart that I write this today, going forward I will be the sole contributor when it comes to sharing William’s journey with you all.
This isn’t what I wanted for my family and I am personally going to need some time to adjust to being a single parent, to adjust to not being somebody’s wife and to spend a little time getting to used to being alone for the first time in almost thirteen years.
As you can understand this is a very difficult time and I need a little privacy to get my head around things.

David is Williams dad and will continue be involved in Williams life as much as possible and any decisions that need to be made on Williams behalf will continue to be made jointly but sadly that is where it will end.

Much love, M x

Posted in autism and covid19, Emotions

Am I overreacting?

I want to talk about why we now own these two DVDs

I used to love DVDs, movies are a big passion of mine and had over two thousand DVDs not including TV box sets or Christmas films. About two years ago we realised like many other people that they were just gathering dust because we had become more reliant on streaming services which made me a little sad as I had been collecting them since I was about thirteen and finally decided to get rid of my VHS. When I met Dave he too shared my passion for movies and our collection just grew. I remember the last DVD I bought was for Dave for Christmas 2014 and it was The Guardians of The Galaxy. We gave almost every single DVD away, Big Nan got first dibs of the chick flicks, I kept the Disney classic in a DVD folder and the rest went to our close friends.

We don’t even own a DVD player but yet yesterday Dave bought these two DVDs 😕

Yesterday was Williams 6 month eye check at the Eye Hospital and as I was working and only one parent is allowed to attend due to Covid-19 restrictions Dave went on his own… I’m getting better at trusting anyone other than myself to ask the right questions now… sometimes. They always struggle to do his eye check as he isn’t fully cooperative, They have told us at the last two checks that everything seems fine but they can’t be 100% sure because he won’t let them check as thoroughly as they would like. Because of this we keep going back, waiting for the day they will discharge us as a patient. William didn’t get to see his Auntie H either as she was super busy.

As a treat afterwards for being a good boy Dave took William into the town centre to get him a treat for his dinner. This usually results in copious amounts of cheese straws and sausage rolls from Cooplands. The boy is an absolute savory fiend.

Anyone that knows Dave knows that he loves his Playstation. Not as much as he love William or Rusty but I think it’s on par with me 😂😂😂 so he popped into CEX in Prospect Centre to look at some games. This is somewhere that when at the height of my DVD addiction I used to frequent on my lunch break when I worked in the offices above. 💿 The staff have always been pleasant, helpful and friendly.
William is a sneaky bugger when he wants to be, we’ve been in shops when he has grabbed something random off the shelves because it caught his eye and I’ve nearly left with it or when he has started trying to eat a wrapped chocolate bar and ‘ve had to pay for it knowing full well he doesn’t like turkish delight (It’s a good job I do… keep up the bright wrappers Frys 😉)

Dave got shouted at by a woman in CEX.
I will repeat that… shouted at by a woman in CEX.
That’s CEX the most relaxed shop in the world.
‘You’re not allowed to touch!’
‘He can’t touch that!’
‘Covid!’
Now I’m not sure if I am overreacting here but William sits in what is in my opinion clearly a disability stroller. There is a hidden disability lanyard hanging from one handle and a large disc on the other. I’m really angry that they chose to address this by shouting and for anyone but Dave, this could have caused upset or major embarrassment, I speak from experience when I say that on some days life as a special needs parent is one comment, look or cough away from a breakdown. She at this point had no idea if he was planning on purchasing the items or not.
I understand that in the current climate you have to be so careful but these DVDs are wrapped in plastic and could easily be wiped down, We carry antibacterial wipes in our change bag and could have wiped them down ourselves.
I’m also not saying that because William has additional needs that he doesn’t need to follow the rules but there should be at least some modicum of understanding. or a better way of going about it.
Dave bought the DVDs and basically told the woman that was his intention all along despite not knowing William had hold of them as a way of saying fuck you. Mr however I think I would have shamed her, told her loudly all about Williams needs and difficulties and made her feel like an idiot, offered to wipe them down or to buy them if that wasn’t feasible. She could have gone about it in a much better way; she could have walked over and explained to Dave who would have apologised and explained but she didn’t… she chose to berate Dave across the shop floor.
I’m not sure if i’m being oversensitive but I do feel in the year 2020 people should be more understanding before jumping to conclusions. William wasn’t running amok in the store he was confined to his stroller clearly displaying he had additional needs.
If you aren’t allowed to touch the DVDs or Games how are you supposed to read the back to ensure they are suitable? They’ve all been wrapped in the clear plastic, for what reason?

My current writing situation 🥰

On a positive note…
Last night William had just had a bum change (not the positive bit 🤮) and he reached his arms out to me like he wanted to be carried and when I reached down he placed his arm around my neck and put his head on my shoulder. He wanted to give me a cuddle 🥰 He has never actively cuddled before. He will climb up next to you and snuggle in but he initiated a cuddle for the first time. 🥲 I cried and ruined the moment because he then pinched my glasses and ran away laughing but it was so worth it!