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

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

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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 😘

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

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Posted in EHCP Process

Moderating in time

Today was the day in which I should have had an update about Williams EHCP, I should have been able to figure out what the next steps are going to be for Williams education and find out if that slim chance of a special school allocation was within our grasp.

However today was not that day. No days are the days they should be and I an beginning to learn this… I need to prepare myself for these things as they happen all the time and yet continue to knock me for six. As parents we shouldn’t be continuously let down by those who are supposed to support our children and adhere to timescales laid out by themselves.

The EHCP has not gone to the moderators… Still! This is because the medical report needed and the Speech and language report have still not been received. These should have been submitted by 15th of February and its now 4th March 🙄😡

So now we are back in the waiting game… Next week or the one after. Who even knows?!

Posted in Brief updates, EHCP Process

School allocations

I don’t even know where to start! I don’t even know where to begin this post other than saying everything is fucked!

Yesterday was the legal deadline for allocations for special school, I had waited for what felt like an eternity already, the night before I barely slept and for the full day I felt sick and emotional… I chased them at 2pm to be told my caseworker would be calling me back once the allocations were ready. By 4:30 I was beside myself and asked Williams dad to chase as I didn’t want to keep pestering them (always a nice person and doesn’t get me anywhere!)
Shocking horror! Our caseworker is on annual leave! Who the fuck takes annual leave at such a pivotal time in their office… Mark does! That’s who!

5:30 roles around and Elaine calls me….

William wasn’t on the list of allocations!

What? That cant be right… we were assured he was on the list. Elaine explains that as he doesn’t have an EHCP in place he would never have been on the list but we were told it didn’t matter. I pushed for months to get the process started earlier but due to Covid was told it wasn’t possible. I questioned if it would be an issue to be told it would not… ALL FUCKING LIES!

To say I wasn’t angry and devastated last night would be a huge understatement; I cried uncontrollably for about 3 hours, ranted at Williams dad, my mom and friends and smashed up some old furniture before taking the dog on what I can only describe as a walk in which I felt like I needed to punish the pavement. I needed to get out the feelings of despair so that I could face today as super mom because yesterday I felt exhausted… I felt too tired of all this hard work to get shit on, too tired of fighting to get what is best (but then I have always been a melodramatic kind of girl 🤣

I had to wait until today to speak to our senco; Lisa. She found out yesterday that William wasn’t discussed at applications and apparently had a meeting with her line manager and the head of the Hull SEND team Caroline Scott to discuss Williams options. It would have been fucking amazing if they could have called me first so I didn’t spend a full day waiting on something that wasn’t even going to happen!

His EHCP will be confirmed 3rd of March and there is an exceptionally slim chance they may allocate him a special school during that process but I am not holding my breath as I don’t think I believe a word of it anymore.

I have a meeting on 4th March to discuss this other meeting 🙄 and it looks like our options will be the following…


* Keep him in nursery until the term after he turns five – although he gets funding for nursery it still costs me a lot of money each month for his 2 days and paying full costs for 3 additional days is financially out of the question.

* Home school – we both work which would make this difficult but not impossible however it is the interaction he will miss out on which will not help him develop his communication skills.

* Mainstream with a watertight EHCP – I never wanted mainstream as the environment isn’t right for William and his mental health but this may be our only option until special school allocations next year. I would be able to name a set school on his EHCP and I have done research however I just don’t know if this is best.

I will keep you posted on any further developments.

Much love, M xx

Posted in Appointments, EHCP Process, PCP & TAF Meetings

TAF Meeting… Part 4

So let me just take a moment to acknowledge how difficult things have been recently, William is sleeping less than usual and seems to be having more issues with his bowels than ever before… this means a grumpy, exhausted and sometimes hangry mummy at the best of times. Why did I chose before christmas to go on a diet. I’m missing out on soooooo many boxes of celebrations 😭

One of our many ‘stupid o’clock’ snuggles
One of us is wide awake and it’s not me!


As someone who is not afraid to state that I am a pessimist, very neurotic and an overthink you can imagine how I feel going into any meetings and today I was filled with the same amount of dread, not because they’re awful but because no matter how prepared I think I am it never feels enough, at least emotionally.
There we go… self pity over with. 🙃

The meeting was attended by one of the wonderful ladies who work in the special needs room at William’s nursery, the early years senco and myself… a smaller audience than last time but that isn’t always a bad thing.

Williams EHCP has been agreed to be assessed!!! 🎉🎉🎉 a huge relief that we havce gotten over the first hurdle and I don’t have to take it to appeal. It is now with the moderators and I am awaiting the educational psychologist to reach out and conduct their own assesments on William, after that has been done it will go back to the moderators who will band his assesment as either intensive, severe, high or support plan only and some time after that we will be sent the draft to approve. It feels like it has taken a long time to get to this point and even though we aren’t quite there yet it is a step in the right direction.

I love a good table so here is one showing Williams improvement over the last 6 months… Just look at all that green!!!! 🤭

Area of DevelopmentPrevious age rangeNew age range
Making Relationships0-11 Months8-20 Months
Self Confidence & Self Awareness0-11 Months8-20 Months
Managing Feelings & Behaviours0-11 Months8-20 Months
Listening & Attention0-11 Months8-20 Months
Understanding0-11 Months8-20 Months
Speech0-11 Months0-11 Months
Moving & Handling0-11 Months16-26 Months
Health & Self Care0-11 Months0-11 Months

The nursery has advised there has been a little bit of a regression recently and I had to explain about all the changes at home which they understood and will put a plan in place going forward which is amazing, they are brilliant with him and I would recommend them to anyone.

I didn’t want to send William to a mainstream school, I felt it was admitting that a mainstream school can accommodate his needs and I don’t believe they can however today a little bit of reality hit me… I had discussed with William’s dad about keeping him out of school until he gets a place within a special school, it would mean we would have to rely on each other for child care in order for us both to work but we said we would do it however when I mentioned this at the meeting, the senco told me he may not get a place this year, next year or the one after and because their allocations are needs based there is no guessing the outcome. I knew… deep down I did know that it was a possibility but hearing it outloud was hard, I cried (thank god my webcam wasn’t on 🎥) I was very vocal at admitting that I don’t think myself or William are ready for this next big step. It took me two years to send him to nursery!
However putting that aside, I have chosen three schools based on recommendations on their SEN facilities and Ofsted reports and when I am ready I will submit his application, its not due until 15th Jan so I may not be ready until Jan 14th but… I will do it because it is what is right. I think deciding to keep him out of school for a year was a big step but if there is no definitive end date then it is simply impractical and unfair on William. They have told me that they will continue to ensure William is thoroughly supported no matter the setting which based on the senco’s promises previous I 100% believe.
We have a meeting penciled in for March to discuss his transition from nursery to school as I ideally want to increase his days at nursery after easter so that it isn’t too much of a shock for him going to 5 full days.

Special school allocations are announced the end of January/February and mainstream are announced mid April so I will have time to prepare no matter the outcome but it is going to be a long couple of months.

I want to end on a laugh so let me tell you about William’s girlfriends at nursery…
William doesn’t really interact with other children however there is a girl in his class at nursery and she has has taken a liking to him and hugs him really tight every time she sees him to the point his key workers have to pry her off either so she doesn’t strangle him or after William gives them the ‘help me’ look.🤗
So girl 2 doesn’t like William but she does like the sofa he has claimed in the reading nook, William doesn’t want to share his sofa so what the ladies do is seat them at separate ends of it. The girl is fine and quite happy but not for long… William lays all over her until she gets upset and then he laughs! and my mom tells me off for calling him a psychopath! 😂

Much Love M.x

Posted in Autism In The News, EHCP Process

Another void in the system – Not special needs enough?

One of my biggest fears is about William and getting into the right school for him and applications are getting closer and closer so it is a big source of stress during an already stressful time for us.

I read an article recently about a little local boy who was deemed ‘not special needs enough’ for a specialised school and ‘too special needs’ for a mainstream schools who can not accommodate his SEN requirements, leaving him without a place.

The little boy in question in question has a mental age not much older than Williams, is non verbal, is still in nappies and is currently awaiting his autism assessment. On paper a very similar situation to Williams, so as you can imagine this read was my equivalent of reading a Stephen King or Dean Koontz book before bed. 😱

I was advised to reach out to mainstream schools in our area to see what SEN provisions they have should William not be allocated a place within a special school, I have made no secret about the fact there is a specific special school I feel will suit his needs but if that is not possible I would happily begrudgingly accept an alternative but I know that a mainstream school would not be able to meet his needs in the long run, I have reached out to eight different schools in my area, only one which would be easy to get to but I reached out to them all.
* One have said they can not accommodate him despite having a responsibility to adjust their settings to do so.
* One have stated they need his EHCP before commenting, unfortunately due to covid the process of this was delayed and we may not have this in time for applications although I am aware that it is 90 pages long 📜
* One wanted to invite me in for a look around and a conversation but did state after early years they aren’t big enough to accommodate his needs.
* One said they would call me and haven’t
* The remaining four have yet to respond despite a secondary email.

Before I was a single parent, myself and William’s dad had discussed how we don’t think a mainstream school would be a good fit for William and the possibility of keeping him at home until we could secure a place which would meet all his needs however now I am not sure how I would be able to try and home school him and work all whilst fighting for his right to education in a safe and secure environment.
It never crossed my mind that I would need a place at a mainstream school and now I am worried that I may not get one which is terrifying.

All signs and indications point to the fact William has an exceptionally good chance at obtaining a place at his school of choice or at least an suitable alternative but what if he doesn’t? The schools I am reaching out to aren’t exactly helping me make a decision but what if that decision is taken out of my hands? What if no school can help him?

Its a difficult thought to process especially after reading the article (Click here to read it), as with anything about special needs it is a waiting game, waiting for EHCP, waiting for an assessment but as each day passes mainstream allocations get closer and it feels so overwhelming. I guess waiting is the only thing I can do until our next meeting in December with the councils SEN team.

Hulls SEND strategy is dated from 2016 to 2020 and it starts with their vision
Our vision for children with special educational
needs and disabilities is the same as for all children
and young people – that they achieve well in their
early years, at school and in college, and lead
happy and fulfilled lives
.
They talk about their responsibility to commission and provide services for children but there are so many cases where this hasn’t happened that I feel like I am reading a piece of fiction but again only time will tell…

Much love, M. x 😘

Posted in Thank You

In a Gap… Pt2, The Ladder

Today I want to talk about help and the places in which you expect it to come from but more importantly the places you would never expect. Today I want to talk about Essity and the amazing and generous help they have offered us but first I was to give you all a little background on what has led to today. This is by no means a sponsored post as Essity has kept all communication private but I feel they need to be mentioned as people find it so easy to brand big companies as heartless and greedy but today Essity has really helped put us out of the gap we found ourselves in in regards to the nappy service.

We have spoken previously about when it comes to help from the NHS, the council and other sources we often find ourselves in a gap; a void that you fall into when you miss the criteria that warrants help. It can be so frustrating that in our case Williams age prevents him from getting the help he needs or the help we need to keep him clean, healthy, and safe.

We have cried at receptionists, doctors, health visitors and many other health professionals because we have been denied access to the services we so desperately need.

There is a quote that occasionally does the rounds on the support group that we are part of, and it always really resonates with me.

A SPECIAL NEEDS PARENT FALLS DOWN A HOLE

Family/friend: “What hole?”
Boss: “Oh that’s a shame. You can take the day off”
Doctor: “Can you keep a diary of your experience in the hole?”
CAMHS: “We will assess the size of the hole however it may take over 2 and a half years”
Local Authority: “Sorry we don’t have enough money for a ladder”
Charity: “Here is a form to fill in. This will get you on a waiting list for a ladder”
Another special needs parent: “I’m here! I’m coming down there with you, I’ve been down here before and we can share my ladder”

We have had so much support from parents who have been in similar situations to our that it truly is inspirational. I would love to be able to help parents that start their own journeys which is one of the reasons we started our blog. Someone recently reached out to us on our twitter page to see if we could help their friend and I felt like we were part of something bigger. A group of parents who are bound together by being let down by a system that is set up to fail us. To make us feel like we can not help our children ourselves and need the extra support, its dangled in front of us like a carrot only to be pulled that little further away each time.

I just want to give you a little background information on Essity as I had to do a little research before writing this because I had never heard of them before. Essity is a leading global health company that originates in Sweden that develops, produces, and sells personal care items such as baby care, feminine care, incontinence products and medical solutions, plus so much more.

Essity´s vision is according to their website that they are dedicated to improving well-being through leading hygiene and health solutions.

They produce household names like Tena, Libero, Cushelle, Plenty, Bodyform, Cultimed and so many more across the globe
As I have admitted I had never heard of Essity but I had heard of their brands, brands most families have in their cupboards including ourselves.

Thank you!!

On the homepage on their website there is a quote ‘You want to make a difference every day. So do we.’ and usually when I see that kind of thing on a corporate website I would roll my eyes but they really mean it.

Today they have made the extraordinary offer to provide us with some suitable nappies for William until he is eligible for the nappy service from the NHS. This huge company that doesn’t know us from Adam has seen that we are in hole and thrown down that ladder that usually only other special needs parents carry around with them. This massive Swedish company has reached out to a little family from Hull and saved us. I know that may seem extreme as it is just nappies to most people but to us it a necessity and one that we may have been unable to source once William grows out of the standard sizes which will happen any day now and long before he turns four in 6 months.

There is really nothing we can do to repay such an amazing gesture other than to say thank you from all of us. Not just me, David and William but from our full family, from the staff at his nursery, our health visitor and every other professional to whom I have cried to about the unjust 4 year old rule.

Thank You! ❤