Posted in Events & Holidays

Its our birthday! 🎈

And just like that, we turn 2 (well yesterday to be precise) 😊

It’s been a crazy 2 years, we’ve been read in 59 countries, we have 3 social media pages (links below), our story has been featured in online magazines, newspapers and other peoples blogs, there have been many ups and downs but sharing it with you all has made things so much easier and I am grateful to each and every one of our readers.

WORLD DOMINATION MAP

Here are the top 10 countries in which we are read in

  • United Kingdom 🇬🇧
  • USA 🇺🇸
  • Australia 🇦🇺
  • China 🇨🇳
  • Malta 🇲🇹
  • Ireland 🇮🇪
  • Spain 🇪🇸
  • Germany 🇩🇪
  • Canada 🇨🇦
  • Cambodia 🇰🇭

I think the best way to end our little celebratory post is to share our most popular posts in the last 2 years.

all our love 😘 M.x

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in Brief updates

Lets have a catch up – November 2021

Do you know what I want, what I long for?

Its sounds terrible but I would love for William to call out for me in the night… ‘Mom. Mom. Mom’ for him to need me to help him get settled. For him to want to be in bed with me and find comfort in my arms.

I speak to other parents, some who say their child will not settle without them, some who relish in the closeness and some who refer to their children as a barnacle come bedtime 🤣 some tell me I’m lucky, but I don’t feel it. I have a child that on one hand doesn’t need me but on the other needs me more than children his age usually do.

William rarely reaches out for me for comfort or safety… he finds this himself by going to a safe place on his own and shutting down. This could be his bedroom, the armchair in my living room or his stroller but never in me. Are we right in the need we have in relation to our children? I suppose it all comes back to the expectations we hold based on other families and what we see on TV but my child isn’t like other children and he isn’t like Sheldon Cooper or Joe Hughes and sometimes I struggle to get passed that but on other occasions I embrace it.

Hull fair was here 🎢

I took William with the guy I am dating and his daughter (Little Miss)… we had initially planned to go on the Thursday which is our standing playdate but William was having a great day on the Saturday so we went early which worked out so well.
The fair was busy as it was its first weekend day but since we went for about 2pm, it wasn’t as busy as it would be later in the evening. Both children seemed to love it.

It was the best picture we were getting 😂

Sadly there weren’t really any rides that I felt William would be safe on to ride on his own but he most definitely enjoyed the food and the atmosphere.
I used Williams parking pass for the first time and it made things so much easier, we paid to park but used the disabled section which made getting William out of the car into his stroller really simple, purely because it removed an anxiety I usually have about potentially damaging someone’s car.

As we walked round the fair and watched Little Miss go on numerous rides, William was smiling and clapping his hands with joy. Granted its sometimes difficult to tell because of his face…

Happy face, I promise.

Believe it or not, William wasn’t possessed in this photo but was in fact super happy because he had visited the girls next door and claimed their bed 🤣
This was how he looked during our walk around the fair, this was only his second ever visit to the fair but he remembered the sugar doughnuts very well as you can see.

2019 v 2021

It’s a nice little tradition for me and William but one we can hopefully continue with Little Miss, we both enjoy the lights, music and food. Despite the anxiety that comes with it, it is most definitely worth it, and the highlight of our October before Halloween. I love Halloween, my dad used to turn the lights out and ignore the door much to my mom’s dismay, but I am the complete opposite; pumpkin out and little goodie bags for the kids. This year I had my little vampire to help me.

I want to suck your blood eat your candy

He wasn’t a fan of coming to the door with me but loved playing with the bubbles in his goodie bag and eating copious amounts of sweets. 🍬🍭

Williams Pica seems to have gotten worse and he is even more determined to eat his nappy, after a frantic phone call to 111 due to his poop being full of nappy crystals, I discovered they are none toxic and as long as he isn’t being blocked up by them, then he will be ok and based on previous issues, I am a pro at establishing if he is blocked up… I do not want to go through another regime to clear him out. 🤮 I’m a little lost regarding how I stop him eating it as he is soo determined. During the day I can run interference, but I cannot seem to stop him on a night, he has adaptive sleepsuits (these zip up in the back) and baby grows. I’ve even been putting a pair of boxers of the nappy to restrict access, but nothing seems to stop him, and I don’t feel like there is much support out there for this.

I chased up his school place only to be told there is no update, and they will let me know when they have one, but I won’t be fobbed of that easily and will be chasing each month after their allocation meetings going forwards. We will not be forgotten about. I also chased the sensory pathway referral as that has been a non-starter since it was mentioned in July and am awaiting an update.

William was back at the eye hospital last month for a check up and just like every other time, he didn’t cooperate, and they cannot dismiss him as a patient until they can conduct a full test…. They think all is good but don’t want to take any chances which is brilliant of them.

We have an upcoming paediatrician appointment next week and an impending review with Williams senco and nursery so I will make sure to keep you all posted on those.

No update on wheelchair services although William’s dad is chasing them; they initially offered us a wheelchair which isn’t practical for William, so we asked about a new adaptive stroller instead and are awaiting their decision. It only took a year after the referral to get this far 🙄

And finally, the dreaded DLA renewal has thumped onto my doormat, so I have lots of tears incoming due to how brutally honest you have to be, although you never know, it may be easier for me this time since I started sharing our journey… who knows 🤷‍♀️

All our love as always 😘, M. X

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

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.🥰

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

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

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in Brief updates

Last night they heard the screaming

Then a silence that chilled my soul.
The type of silence that comes when the tears dont stop but you can’t breathe enough to make noise… I know this song is about domestic violence but I felt it was an accurate (even though edited) lyric to describe my emotions yesterday.

I’m not sure if I mentioned this previous but I had invoked my right of access in accordance with the GDPR act 2018, requesting the local authority send me all information in relation to educational matters for William… if anyone reading this is going through something similar; I have an amazing template that another mom sent me 🙂

Lets just throw out there that I have had an amazing week in relation to William, he was at his dads so I had chance to plan my next venture into decorating but I received Williams blue badge which give us the right to park in a disabled bay (I don’t drive but will come in very handy when we are in someone else’s car) and I spoke to the nursery who have advised I no longer have to pay for William to attend and only pay for his meals, well I am in credit so I won’t have to pay anything right up until he leaves next Easter.

The right of access is also known as a subject access request was received today, and it’s made me so angry and upset that I needed to lock myself in the bathroom (The MR was here and he isn’t ready to see this side of me yet or maybe I’m just not ready to show him🤨) but I angry cried, you know the type; loud and messy. Smacking my fists on the floor feeling like my rage would destroy the concrete and not my hands. My neighbours must have heard me and I’m pretty sure I made noises only dogs could hear but I needed to let it out but I was so worked up that I couldn’t breathe and the angry tears became silent ones that I had even less control over.
The reason I had done a S.A.R was to catch them out in lies to back up the potential tribunal but I didn’t realise that it would reopen old wounds 🤕

I remember special school allocations like it was yesterday, it was another couldn’t breathe moment. It was February 15th. check out the post School allocations, if you cant remember.
July 2020 we were told he was going to considered for place… There isn’t a single document in the full S.A.R relating to any conversations in regard to this! not one! meaning that when I said the whole thing was all fucking lies, I was in fact correct. It was all fucking lies!

There are lots of missing sections, specifically relating to meetings, discussions and referrals in which I took our senco’s word for and apparently haven’t happened. I believe there is another child’s information in there too (How many times is the L.A going to breech GDPR? actually don’t answer that since they are still referring to the 1998 DPA act in their emails)

I’m angry at myself for being so upset, especially when its just confirming what I already knew, I only wanted the documentation to back up my claims with the solicitor and hadn’t even considered how it would make me feel 🙄

There was something else in there that I have great concern with but am awaiting clarification on its meaning before I comment on it but if what I think I am reading is correct then the whole fucking authority is morally wrong and incapable of putting children above themselves.

Stay tuned in by subscribing so you don’t miss out on the instalment of ‘how the local authority fuck us over’

Much love, M.x

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

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 😘

Posted in Events & Holidays

The Hobman Holiday

It was that time of year again, the annual family holiday. The stress, the anxiety, the tears and that’s just me whilst trying to pack our bags 🤣

It was a new beginning this year as it was a pureblood adventure, cheeky Harry potter reference there 😜 Mom and Dad, with their two kids Me and H and our two kids Kaylee and William.
each year our numbers have dwindled, my dad jokes that the holiday metaphorically kills people off… he was fearful for his life, if mom hasn’t got rid of him in over 40 years, i think he may be safe 😂 It sounds crazy but this was my favourite trip yet and we have being doing it since 2017. I climbed the ingleton waterfall walk whilst pregnant with William. If you haven’t done it, please check it out by clicking here as it is beautiful.

Just like last year William loved stream walking, last year we went slightly later in the year and he had to be fully clothed, warm and in wellies but this year I got him some aqua shoes from amazon which were amazing as it meant he could scramble over rocks in the water. Kaylee was brave and they both went in, in bare feet 😮 Nanna planned on keeping her feet dry but William had other ideas and dragged her in with him but me on the other hand was all in, as you can see my feet are full submerged… I was not wearing aqua shoes; my sketchers will never be the same!

Swimming in Ingletons outdoor pool is always a highlight for me and sadly last year it wasn’t open due to Covid but this year it had undergone a refurbishment and was open, we took full advantage and booked it privately. If you are in the area (maybe after the waterfall walk 😉) check it out, here’s the info. The pool is kept amazingly clean and has disabled changing facilities which made getting William ready and changed afterwards a dream. The staff as always were super friendly and helpful.
I worried about Williams bowel problems meaning we couldn’t swim as irs super difficult to find swim nappies in his size, I mean look at the issues we had with standard nappies 🙄 however there is website called splash about which sell specialised wetsuits without the specialised price. check it out here. William is modelling the ‘Jammer wetsuit in cobalt blue’ the website claims that this is the first and only wetsuit to provide faecal leak protection 💩 well I am not sure if that statement is true but it does work and for less than £30 you can’t go wrong! I will definitely be buying the next size up when it’s needed.
The blow up life vest was an absolute waste of £13, not including the link as I wouldn’t want anyone else to waste their money. It claims to be designed for children ages 3-6 years but was huge on William who is 4 and a half despite tightening the straps as far as they would go. I also deemed it unsafe as it kept tipping him upside down which meant he could have no independence in the water. To add insult to injury, the material was so thin that William bit through it within 15 minutes so it got abandoned in the pool bin.

I want to talk about something that happened after swimming when we went for a cream tea to celebrate H’s birthday, something that happens a lot… I would like to throw out that I do not currently have a blue parking badge for William but I have applied for one and until I receive it we are not eligible to park in disabled spaces so we don’t however it does make parking in standard size spaces a nightmare, we try to get into a mother and child space but these aren’t always available. The place we chose for our cream tea is divine but doesn’t have mother and child spaces  so we pulled into 2 spaces whilst we unloaded william, his pram and the essentials (there were numerous other spaces available) the reason we did this was to protect the cars on either side whilst we remove Wiliam from the car as it can be difficult and he often kicks the car door which can cause damage to our car and those around us. I will reiterate her that there were numerous other spaces available. A “gentleman” and I use that word ironically decided to pull up behind us and comment on our parking, baring in mind it was easy to see we were trying to remove William from the car. There was only myself, William and my Mom there at that point. Firstly the “gent” had no reason to comment as there were multiple spaces and I personally think we were doing the right thing. He also commented when he thought it was two women on their own but shit himself when my dad stepped in who was in a car travelling behind us. Comments like this are the reason I suffer with anxiety when taking William out in the car (Baring in mind that I don’t drive so rely on other people) making comments to women on their own can be intimidating and this guy blatantly wasn’t aware my dad was with us and I genuinely believe that had my dad been visible at the time of his comment that he wouldn’t have made it.
There are too many people in this world that think its ok to make judgemental comments about others without knowing the full facts, you read about it all the time in the papers. people leaving notes on cars in disabled bays because they don’t look disabled or people commenting as people with hidden disabilities use disabled toilets. Its crazy that people think this is acceptable!

William did so well with his walking whilst we were away and because the cottage was at the end of a lane in the middle of nowhere, he had the freedom to walk at his own pace and explore his surroundings, he struggles walking when he has to be controlled because of traffic or needing to be somewhere at a certain time which is why we have asked for a referral to wheelchair services to try and get funding towards his own adapted stroller, however this was sent in september last year and we are still chasing it now 🙄 Just like everything else he needs.
Picture one is so special, I know it may not look it but it genuinely brought tears to my eyes. During our walk I was tickling his neck with a piece of wheat and when I threw it away he picked another one and passed me it so I would tickle him more… he is doing so well with his object exchange.

Sleepwise wasn’t ideal whilst away, I was sharing a room with William which meant I couldn’t go to sleep until he was asleep and I have to wake up when he woke. Unfortunately on the Wednesday he didn’t go to sleep until the 3am and then on the Friday woke up at 3am so needless to say, I need a holiday to recover from my holiday haha. He found great comfort in his tablet whilst away which he sadly broke however thanks to Amazon’s no worry warranty, he has a free of charge replacement due any day now.

The holiday as a whole was hugely successful and William did so well with the changes to his routine, he loved being with all his family and as always took a huge shine to his grandad. We got a little wet going out for our evening meal which threw William a little out of sorts (third pic) however he soon came round and enjoyed his dinner.

I won a bad parent award as I had accidentally packed a small pack of nappies by mistake, thankfully I have Amazon prime and was able to get some to us, not next day as we were the middle of nowhere but within 2 days which is pretty bloody brilliant. I felt like I had gone back in time having to pay for them again… honestly I was so angry with myself and don’t know what I would have done had I not been able to get any 😥

It was really nice to have some much needed family time after a year and a half of lockdowns, isolation, shielding etc and I look forward to doing it so much more often 🥰

I have a little confession to make, I started dating… I’ve spoken on here about how I don’t know if I would ever be ready or how to introduce someone to William but it just sort of happened in the most natural way. He’s an amazing person and William immediately took to him and his daughter which is more than I could have ever asked for.

I share a lot on here about Williams journey and how I handle things (or sometimes dont), but this is private for now. It’s happening, I’m very happy, as is William and that is all that matters.

Much love 😘, M. x

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in EHCP Process

The (EHC) plan that time forgot

There is still no update on the L.A finding him a suitable provision and they are well passed the 20 week timescale shown below, gratefully pinched from the Kids website 😊

28th October 2020 they confirmed all information was received.

9th December 2020 they confirmed William would be assessed for an EHCP – the last day of the timescale.

17th February 2021, they had up until this date to gather report and information. Reports were not gathered until the final two weeks of this deadline and his report from speech and language was not included despite this being his main area of need. (lets not forget that the specialized allocations were 15th February and I have been asking since the beginning of 2020 (February at the latest and kept getting told, we will start when… we will start after etc)

The draft should then have been issued at the end of this week. However, it was received 1st May 2021, almost 27 weeks after the confirmed they had received the request. I should have received my final copy and be done and dusted by that point but no, not in Hull 🙄

We are currently 41 weeks in and still no final copy despite multiple chases.

The local authority are currently over double the timeframe they should adhere to which is why we have no idea what your future education will look like. It’s a joke.

*Amendment*
On the 28th July I received a phone call from Williams new case worker, the illusive Richard day, I was beginning to feel like this man didn’t exist. The Local Authority is finally in full agreement that William needs a place within a specialised provision! we are currently unaware of where this will be but they are aiming to have a provision for April/May 2022. The overwhelming relief was amazing however due to the lies and misinformation we have been given in the past, I wont full believe it until they follow through on this.

My solicitor is submitting a complaint in regards to the timescales taken for the EHCP and we must await this document before we can decide whether we wish to proceed to a tribunal. I’m not looking for compensation (why take money from an already underfunded department?) but they need to know that what they are doing is legally and morally wrong.

I will keep you posted, M x 😘

Posted in Brief updates

Congraduations 🎓

It’s a bittersweet feeling when children of William’s age are moving on and he isn’t, on the 16th July he officially graduated from nursery, only he didn’t.

I’m looking at his little diploma now and it brings tears to my eyes thinking about it, I’m sad but I’m not sure if I am sad for William or for myself. It sad that he doesn’t get to start school with children his own age in September but then if we think about it, he isn’t like children his own age.

William doesn’t understand that he should be going to school so the more I think about it, the more I think about it the more I realise that I am sad for me, sad that I don’t have the excitement of a first day, meeting other mom’s in September, school uniforms and meeting teachers etc. I know it will come eventually but the delay just makes me feel like we are even more different from other children; i feel like its segregating us further.

On the other hand, it makes me really happy about how inclusive his nursery are and that even though he isn’t moving on, he got to graduate with his class. I am so grateful they are keeping him until the easter term; I honestly don’t know what I would have done if they had of said no.

A short and bittersweet update today, much love M 😘 x

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in Open Letters

A letter to my son

William,

1578 days, that is how long I have loved you, and that isn’t including the time I grew you inside of me, but I assure you; I loved you just as much then as I do now.
I have spent a total of 8 nights away from you, that’s only 0.5% of your life but from Saturday and until you start school, we will spend 28.5% of the week apart.

I would never have said a year ago, that I would be awake all night trying to comprehend these figures and telling myself that its going to be ok, that you will ok without me, that I will be ok without you.

I’ve spent almost 10 months thinking about how badly I need some time, ‘a break’ so to speak but I just wanted your dad to do his share because for the first four months through no fault of my own, you hated me. I could feel it and believe me, I didn’t like myself very much either at that point, but we got through it. The change in your routine blew everything apart, you struggled to eat, you lashed out and broke things, you cried, and I was beginning to think you didn’t know what sleep was but after 122 days; you slept. You slept in my arms after hitting me and yourself, but you slept, and it was a breakthrough or maybe a breakdown but you slowly got on board with your new routine and life got easier for both of us.

And here we are now, we have a good routine in place which is about to change once again and I don’t think either of us are ready for it but it has to happen.
I never wanted you to have two ‘part-time’ parents, two houses or any of the other things that comes with separation. I wanted stability for you, I know how much you need that but somethings are beyond our control, but I tried and I want you to know that, I tried… for you.

What if you need me and I’m not there? What if you seek me for comfort in a strange new environment and I’m not there? I cant always be there but I wish I could and I needed you to know this. You maybe don’t understand this now but when you are older and can maybe read this you will.

You are without a doubt, the best thing that’s ever happened to me, my greatest achievement and the love of my life. I wouldn’t be the person I am today had I not had you and I am forever grateful for you and everything you are.

I love you in the morning and in the afternoon, I love you in the evening and underneath the moon 🌙