Posted in Emotions

Fog

I’m not really sure about where to start with this post… I’ve had a bit of a block recently. I’ve been updating our Facebook page but not much else. I guess I’m a little blocked.

It’s not that I have nothing to write about but more than I can’t put things into focus. The best way I can describe it, is that my head is fuzzy.

I’m finding it difficult to understand how I am feeling, why I am feeling certain ways and I’m not really thinking rationally about day to day things. I’ve not hidden it, I’ve been honest about how I’m feeling and some days I can feel the fog lifting.

I didn’t want any of my fuzziness to infect my posts which is why I have been a little M.I.A recently. Writing things down is my way of processing things, I don’t share everything I write as some of it is just to vent but recently my writing hasn’t been consistent, it hasn’t been cathartic when I jot things down, uts been irratic and angry and I don’t know why.

I guess what I’m trying to say is that we are ok, William is thriving at school, Liam and I are doing great and we are now living together. Little Miss is still as sassy as ever, Sundays are still days for Big Nanna and the world is still turning.

Hopefully the fog lifts soon and I can get back to some more consistent and therapeutic writing but until then look out for sparodic posts that may not be on track with my usual style of writing.

Much love, M xx

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Posted in school

Self doubt

I had a moment last Wednesday night… and when I say a moment I mean that I didn’t sleep through worry (or maybe it’s this cold 🤧)

I worry alot so this may not seem unusual but this was different, this wasn’t necessarily my usual kind of worry. This was more self doubt. I had fought to get William the right education for what feels like eternity, we got the school we chose but I started to panic that I was wrong. What If it wasn’t the right decision. What If I had fought so hard for the wrong thing.

This hadn’t come our of no where, it was because Williams dad and I were taking to his new school the following day and I had become immersed in this overwhelming fear that I was wrong. I can only compare it to one other feeling I had had previously and that was when I was pregnant, I was terrified that when I went for my first scan, there would be nothing there. It was that same kind of feeling! I spoke to other people about the scan feeling and I’m most definitely not the only one and I imagine my doubt about the school wasn’t just something I experienced but last Wednesday night I felt alone in my fear.

The Thursday morning was just as bad, whether is was the cold, my bad shoulder, the lack of sleep or the worry… maybe even a combination of all three but I didn’t stay still, I couldn’t eat or focus on anything other than watching the clock waiting for the time I needed to meet William and his dad. Let’s just put it this way… the saying is right. A watched clock does go slower. ⏰️

I had spoken to Williams teachers via email a few times over the last few weeks but it’s not the same as meeting face to face. The moment we arrived at the school, they put me at ease. They didn’t just fall in to SEN teaching, they are there because they are passionate about it, because its not just a job to them but a vocation. They know every child from noises they makr in the other room, from tiny footsteps or a stray sock on the floor. Other parents had given me glowing reports about the teachers too which all made sense once i met them. William immediately connected with them and just left us to go and spend time with his new classmates. I knew as soon as he did that, that all the worry was for nothing. It was 100% the right decision for William and I was right to fight so hard for it.

The school itself is perfection. Everything is laid out perfectly, there is structure to everything and more visuals than you can possibly imagine. It’s so accommodating for children like William. I would love to say I held it together but we all know that would be a lie. I sobbed at how perfect it was for Williams education, the fact that he will travel through the school and be safe and in the right environment until he turns 19 just gave me this overwhelming sense of relief and in a big headed way a sense of accomplishment. I did that. I fought and I acheived it. All the worry was gone and I felt proud of myself.

27 days. That’s all he has left until he joins his classmates and I can not wait. I’m so excited for him to be in an environment that will be so beneficial to his development.

Uniform all ready 🥰

It’s been a long time coming but it will be here in the blink of an eye and as confident as I feel about it, I know that come that date in April I will be an absolute mess.

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Posted in Appointments

Precautionary

Poorly kids are the worst! 😭 Actually, I take that back… a 7 and a half hour wait in our local children’s A&E is the worst.

William hasn’t been feeling well since the end of February when he got his first (of many) cases for tonsillitis. Antibiotics didn’t clear it after the first dose finished so 5 days later we were back at doctors for a second dose. 3 days after the second dose ended he was still poorly so on Monday his dad and I took him back to the doctors (I feel like we’ve seen them that much recently that they’re going to invite us round for dinner at Christmas 😳) the doctor said he was fine but tonsils still a bit sore but no longer infected, the give him pain relief and he would be fine.

Fast forward to Friday and I have to take him to chemist as he has conjunctivitis because let’s be honest, it never rains, its pours 🌧 Drops received and starting to be administered, let bare in mind that my shoulder has gone again so I’m fine this one handed… its not easy even with two hands. Friday evening William was lethargic, hot to touch and clingy and he had barely eaten or drank all day…Not to mention the waterfall of slimy vomit that came out of his mouth and all over me. Honestly it’s like my kid aims for me when he’s sick 😫

Like any parent I was worried and ring my own mom for advice and then rang 111 who told me to take him into A&E as soon as possible as a precaution. Luckily I have some amazing friends who are used to being on standby when it comes to getting William places in a hurry.

We arrived at A&E at 8.15pm. It was busy, super busy. Kids were screaming, adults were moaning really loudly about how long they had been waiting etc. One parent told me it was going to be a 5 hours wait… she was wrong 😭

I want to talk about the waiting room, firstly the chairs are not built for 7 and a half hour waits with a gimpy arm. But that’s not my gripe… my issue is how unfriendly the waiting room is for a child like William. The lights are super bright and loud, some of them were flickering.the waiting room is busy with colour. Lots of different colours and sparkly fish hanging from the ceiling and the air con is loud. For an autistic child with sensory processing disorder that is a lot to take in for a lengthy period of time. It’s a difficult wait for most children but I’m sure other towns have sensory rooms for children like William. I’m almost sure the eye hospital next door has one or were at least trying to raise funds for one. It was also a nightmare that only one person could accompany each child, I understand that there is a limit on space but William needs to be restrained to be examined and unfortunately its not ideal with two arms let alone one.

Anyway that’s my moan over… the nurses who triaged us were brilliant. So patient with William and understanding. The doctor we saw was also amazing. Thankfully William just has a viral infection which will pass with calpol and time and even though the wait was long and painful I’m glad we went. I’m glad I made the 111 call and followed their advice because really you just never know with any child what is wrong but when they can’t tell you, it’s so much worse.

Hopefully he will be better soon and can enjoy his last 2 days of nursery next week. 🤞

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Posted in Brief updates, Emotions

Calling all lazy parents

I would like to take a moment to state that I do not always want to play with my child. I sometimes can not go through the same set of flashcards for the 500th time I’m a day.

We all have moments in which we check our watch and realise bed time is a long way off. This doesn’t make us bad parents, it makes us tired parents. It makes us human.

Becoming a mom or dad doesn’t make us super human. It doesn’t change the fact that we crave time that’s ours and ours alone. That soak in the bath which involves candles, a book and enough time to shave both legs 🦵 time which doesn’t involve accidentally sitting on a rubber duck.

We want to watch TV or a movie that doesn’t involve animation or singing. I would like to have a power ballad stuck in my head instead of nursery rhymes.

There is no shame in needing a little time out. We can not always be on it 100% of the time and its important to try and take that time when we can, so we don’t burn out.

I remember thinking that my kid would have limited screen time… that didn’t happen. It is I who ended up with limited screen time 🤣 I can’t remember when I last watched Corrie when it actually aired instead of days later. I gave up completely on the other soaps as there just aren’t enough free hours in a day.

I work part time and absolutely adore my job. It gives me something to focus on that isn’t being Williams mom and I need that but I admire those full time workers and full time parents. I choose to work and if someone chooses not to then that is their business. There is a lit of stigma around parents that work and parents that don’t. There seems to be no happy medium. There is a archaic kind of judgement that working parents should be home raising and looking after their kids but then a judgement against those that choose to stay at home about how they should be working. I feel like non of us can win!

So this post is dedicated to the parents who aren’t ashamed to say that some days they only give 99%. The ones who don’t want to listen to the same song for the millionth time. Who pretend peppa pig goes to bed at 5pm. The ones who pretend toys are broken but have secretly take the batteries out 🔋 enjoy that 1% of time you need for yourself because you deserve it. You deserve to shave both legs, to wash all the conditioner out of your hair and to not have to hide in the kitchen when you want to eat a whole chocolate bar!

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Posted in Events & Holidays

Autism Night Before Christmas – by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…
But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity
He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned……

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Posted in Emotions

Tell me lies, tell me sweet little lies

Today’s topic of conversation inner turmoil is trust. I’m not sure why but its something thats been occupying my mind a lot recently and I thought that by writing about it, it may stop running around in my head rent free.

I think we have spoken about this before in many other posts but here we go again… Trust is a huge thing for me and many of you will know why, or at least have suspicions. I value truth above all else and it is something I live by, in many cases I can be too honest and it makes me a human version of marmite; people with either find it refreshing or irritating, love it or hate it, it’s just part of who I am unless it comes to William, I sometimes find it hard being honest when I need help and will just keep going, pretending all is fine and then will write on here about how hard it can be and people will reach out, why didn’t I ask for help? Sometimes it’s a pride thing, sometimes I think that if another mom can do it why can’t I, even though our children are very different. Any way I think I’m digressing from the subject at hand here…

In any relationship trust is one of the most important thigs whether it’s the trust between partners, the trust you have in the professionals and babysitters who look after your children, the trust between an employee and their employer and the trust your child has in you. Trust is something we have in many different variations, I have a trust in the battery on my laptop, that it won’t die on me whilst I am writing this. (Currently on 26% 🔋) My main thoughts today are what we do when that trust is broken, how we can overcome it? If we can overcome it? If my battery dies, I wont trust it to last next time its low and would bring my charger downstairs but what if it’s a person that breaks that trust?

A wise person told me that once trust is broken, any form of relationship will never be the same again. That’s not to say that things can’t be good again but just not the same and we can either accept that and try to move passed it or we can write off that person and make sure we are more guarded with the next.

Protecting yourself and your children from the pain that comes with deceit is important but is it possible to shield yourself too much? We have been let down by so many medical services, local authority departments and people that I wonder if we should ever trust someone in what they say again.

Trust isn’t just about lies but about the breaking of promises or failing do something you should do.

  • ‘The referral has gone through, Mrs Buckley’
  • ‘I know what I’m doing’
  • ‘I love you’
  • ‘He on the list of allocations Marie, I made sure of it’
  • ‘Your arse doesn’t look fat in those leggings’
  • ‘I’m not having an affair’
  • ‘It’s just a little needle, it doesn’t hurt’
  • ‘William will grow out of it’
  • ‘I’m ok’
  • ‘It’s fine’
  • ‘I’ve chased the referral’
  • ‘I understand how hard things are for you and I will help’
  • ‘I’ve just been for a drive’
  • ‘I can do it on my own’

And my favourite silent lie… a smile 🙂.

The list is pretty much endless, but how many lies is too many? When do you just walk away? When do you change doctors? Or professionals or cut people out that you can’t trust?

There are a few people in my life that I have implicitly trusted, even fewer in William’s life and it seems that I don’t really learn my lesson. I have misplaced faith in people that talk the talk but never back it up with anything of substance. People that tell me they are doing one thing but are really doing another and just try to placate me to stop an argument (that the truth would have prevented), to stop me legal action, or to mislead me into forgetting about my rights or prevent official complaints. I think the last few years has taught me to question everything and everyone, and I’m not sure if that’s the right thing to do.
Give people the opportunity to lie to you and if they don’t, it tells you something about their character or even their professional ethics but if they do… you have to make a decision. Was it a lie? Was it broken promise or a failure of duty? What ramifications did it have? Can you trust that person to continue in their usual capacity in your lives?

Can you forget about it? Can trust ever be fully rebuilt?

I guess that’s the big questions isn’t it?

P.s, My battery is at 9%

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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

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 Brief updates

Where do we go from here?

The battles done and we kind of won, so we sound our victory cheer… where do we go from here?’🎶

If you recognise the above Lyrics then you are as much of a nerd as I am, but I though it was very apt to describe our current situation. If you don’t follow our journey on social media, then you won’t be aware that William’s final EHCP has arrived! After what I believe has been 44 weeks. 24 weeks over the legal deadline.

The EHCP specifically states that William will be attending a special school as soon as a suitable provision becomes available, it backs up what the case worker (the illusive Richard Day) told us over the phone which means they can not back out of it.
Although the lyric states the battle is done, the war isn’t over, and this was just a small part of our journey. There is still the fight for a school and ensuring it is the best setting possible for him and then once he is in a school ensuring they stick to the plan and that it adapts and changes as he needs it to.

That is just the education side of things, there are so many other area’s that require a fight, accessibility, mobility and many more. I feel like every battle is going to be uphill but right now I am relishing in this one. There were tears from myself, Williams dad and family members who had all been in the with us. Happy tears for a change.

At the height of the pandemic Gavin Williamson announced that there would be flexibility over timescales in relation to plans; I remember writing about it at the time and being assured by the Local Authority that this wouldn’t affect William… 🙄 I don’t think there is a big enough eye roll emoji to insert here. Is 24 weeks classing a flexible or absurd?

In 2019 Gavin announced they were conducting a SEND review which has as you can imagine been postponed as with everything else the authorities have been doing, my concern is that Gavin seems to want to abolish the EHCP claiming parents should be able to get their child what they need without one however this massively worries me. I know that more and more requests for EHCP’s are being declined but approved upon parents taking it to appeal. Not having an EHCP creates so many barriers and I worry if these are no longer going to be available then it won’t make it easier for children to access the education they need but would make it near on impossible.
I found it so hard to even get the request for the EHCP let alone going through the motions on ensuing it was done and watching our timeframe more than double. How can parents help their children without a set timescale and document to ensure the local authorities stick to it? Will it just be a verbal agreement between schools and parents? There would be no ramifications if it isn’t upheld? I’m frightened for those who don’t yet have one, or don’t know they need one. And for those of us that after blood sweat and lots of tears (and coffee and therapy) finally have one that may become null and void.

I guess time will only tell, much love M 😘