‘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 have come to realise that I’m a bit of an introvert, it sounds silly as I come on here and share so much information but in real life I shy away from people, I avoid activities and places that I am uncomfortable with, and I want to keep myself away from people who may judge me as a mother or William as a child. I am now at the point in which I don’t know if what I am doing is to protect myself or him. I want to tell you about my irrational fear of playdates…
I went on a playdate once, I mean there has been more than one over the years considering we have one every week minimum but this one is the most memorable, it much have been well over 2 years ago and I must say it was one of the most horrendous moments of my life.
William was definitely under the age of two as it wasn’t until his two-year check-up that I started to accept his potential problems.
Soft play! What kid doesn’t love soft play? My kid; that’s who!
I went with two friends from work who had both had their children around 5 months after I had William, please bear in mind that these two women, were women I felt comfortable with and had spent a lot of time with over the years, but I was dreading it, I remember being stood at the bus stop feeling so sick that I almost cancelled. I had already started noticing the stark differences between my child and children of his age and being around them and trying to sugar coat and deny Williams delays in development was exhausting and the more I had to do it, the less I was convincing myself.
Their children were beautiful but that wasn’t what bothered me, what bothered me was that they were so agile on their feet, they climbed and played independently, they communicated not only with each other but with their moms too whereas William just clung to me crying. He was barely walking independently and struggled to communicate non-verbally let alone with words.
The date didn’t end with soft play, we went for lunch. Their children played and independently ate and seemed to thoroughly enjoy themselves. William refused to eat and remained silent.
I felt like a failure, what had I done so that my child wasn’t like theirs? Was I not loving him enough? Was it because I was working and wasn’t with him all the time?
I didn’t reach out for another play date. Was that wrong of me? I truly don’t know. I don’t actively seek out play dates with anyone, but sometimes they just happen.
We have play dates once a week with the same child and they go really well but they are often in the comfort of our home, William has familiar surroundings and can easily access his safe place. We have had a few outside the home and some have been great and others not so much, but it all depends on how William handles the situation or environment. We went into our local park once and it is truly beautiful in there, I don’t think I appreciate it enough since its on my doorstep but on this day it was busy, it was a half term of some sort and William was struggling, he wouldn’t walk and I didn’t have the stroller since we are still waiting his referral and he kept laying on the floor to the point I was peeling him off it like day old gum. Teens laughed at him and I felt myself getting more upset, William continued to shutdown… It was not a good play date, but we continue to have them, maybe it’s because I understand William more now than I did back then, I just don’t know. I don’t know why these playdates don’t bring on anxiety and sickness, but others do. Maybe it’s the unknown 🤷♀️
I guess I need to put myself and William out there more, but I don’t know if it is what is best, William doesn’t engage with other children at nursery so am I being unrealistic in trying to get him to engage with other children on his days off, is it fair on him? But then am I just saying that because the memory of how bad of a mother I felt back then is impacting my decisions now?
How silly is it that something so simple as meeting other parents and kids can make me feel so anxious that I am physically sick? How do I get passed this? Do I even need to?
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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
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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.