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 😘

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 EHCP Process

Announcement

I have been sat on something for quite some time now but have been cautious about making it public knowledge until the right time, but I think now is that time, time to let the proverbial cat out of the bag 🐈

I have been a little Jekyll and Hyde in posts about mainstream schools, those that have been around since the beginning; since before ‘Our journey onto the Spectrum’ was a thing and it was just simply our life, will remember how adamant I was that William was would get the education he needed, the education he deserves. Somewhere over the last year, what was right for William got turned around and it because what was right for the Local Authority.

Pressure was put upon me to name mainstream schools, with phrases such as
‘by law you have to name mainstream schools for allocations…’
I can categorically state this is absolute bullshit! But when the forms came through, I felt forced to do so, I felt manipulated and bullied into making a decision that I new deep down was not correct for my child.

The crushing disappointment that came on February 15th when William was left of the consideration list for special school places almost tipped me over the edge mentally and knocked the little bit of fight out of me that I had left. I remember saying to Debs that I just couldn’t fight anymore, and she told me I was only just starting… she is usually right always right but I just felt so deflated that I wasn’t ready to admit that to myself. If we think back to that time; I kind of had a lot of other things going on in my personal life. Breakdown of marriage, adjusting to being on my own, juggling my finances and not being able to see my family due to covid. I think I was at a stage in which if the Local Authority told me to have William educated in the local dump, that I would have agreed.

Williams EHCP draft was completed on 29th April, but I didn’t get it until 6th May, I filled out my parental response form naming the mainstream school I had chosen and in which myself, the nursery and the Local Authority Senco had all liaised with shortly before.
The head teacher couldn’t confirm they could meet Williams needs without the EHCP but I was expected to name them for the final copy without this confirmation… I felt I had no choice, so I named them and was ready to post it and I am so grateful I didn’t do it straight away.

On the 7th May, I got my fight back with help from the most amazing woman, a woman who has never stopped fighting for what is right for her child. A woman who helped me kick myself up the arse and point me in the right directions about my rights. K❤ If it wasn’t for her, I wouldn’t have sought legal advice, which I have been given free of charge thanks to the specialists she pointed my in the direction to… I have since been awarded legal aid and its not even something I would have looked into if not for her.
I tip-exed out my school of choice and wrote that I specifically wanted a specialist school and named one in which I feel and have always felt would be appropriate for the education of my child, one in which can without a doubt give my child the education he needs and deserves. I sealed it and sent it straight away. ✉ Had it have been 24 hours later I would have made the biggest mistake of my life (and believe me, I have made a few… divorce impeding remember 🙄

I think friendship and support comes from the most random and unlikely places but when your children have special needs, you just see each other and think ‘I’ve got you’
There are so many people in my life that have supported us in this journey purely because they understand and  have been there themselves.

The Local Authority doesn’t tell you what you need or are entitled to, the don’t point you in the right direction for your children, they point you in the direction which is the best for them. It’s the other parents that do that, the parents that fought a little harder than we did, the parents who scraped and struggled for help and answers. They then pass that down to us.

The NHS isn’t much better, purely because the communication between departments is virtually non-existent when it come to special needs kids so not only are you fighting one entity such as the local authority but also the NHS and its procedures and policies. I am a huge fan of the NHS and the Queen has rightly awarded them with the George Cross, which is the highest award bestowed by the British government “for acts of the greatest heroism or for most conspicuous courage in circumstance of extreme danger” and the NHS truly deserve it due to all they have done to save lives not only during the Covid-19 pandemic but for the last 73 years.

I saw this a while ago and thought it summed everything up perfectly…

Other parents came into my hole to help me, and I will happily climb into the next person’s hole because that is how this works.

Anyway, I digressed a little from the point, should the Local Authority fail to provide William with an acceptable school setting which will meet all his needs, baring in mind this has to be done by the time the send me the final copy of the EHCP, then I am fully ready to take them to a tribunal. It looks like it may be a big fight 🥊 but I’m ready this time.

Let’s end this post on something amazing.
This is something I never thought I would be able to tell people, William spoke… and in true William fashion; just like all his other firsts, it was at Big Nannas 🥰

He said ‘Nanna’ in context, six times!!! Six whole times!!! and the following day did it again when going passed her street. These may be complete flukes and I don’t want to build massive hopes upon it, but it is so much more than I ever expected. I mean Mama would have been even better but beggars can’t be choosers 🤣

All my love, M xx

Posted in Brief updates

Let’s have a catch up

I have a little notebook that comes with me to all of williams meetings, I use this same notebook to jot down ideas of posts if something has happened or if I am feeling in a sharing mood. Quite often these ideas and thoughts don’t come into fruition so I thought I would put together a little catch up post of all the things I have yet to fill you in on.

So here is a little summary of what is to be included in this piece.
* William’s birthday
* School allocations
* Nappy service
* Impaction
* Big Nan

Williams 4th Birthday!

How is my little 8.8lbs baby now a four year old?! I swear to god I have just blinked and missed a few years. I’m sure I am not the only parent who feels this way but it seems like time has flown by. I can’t be really surprised as we are dealing with school allocations and that doesn’t happen until they reach this age but holy shit he is now 4!!!

I got some funny looks and questions when people asked me how we would be celebrating his birthday. As many people know William struggles should his routine change drastically so my plan for his birthday was to ignore it… not completely but to protect the main structure of his routine. He woke up the morning of his birthday like any other Monday. His dad came to do the nursery run and the house remained as normal. No sign of birthday regalia at all.
He ate his breakfast and went to nursery in his amazing birthday T Shirt (one of many 🥰) made by his Auntie Debs.
We sent a Curly Caterpillar cake from Tesco for him and his friends to share in the sunshine room. No one tell M&S! #FREECUTHBERT 🐛
Whilst he was at nursery his dad (yes we are still coparenting) and I set up the living room with his gifts, card and balloons for him to come home to. I even cooked him his favorite tea which was a full roast dinner with all the trimmings! We had decided to celebrate after nursery so the change to his routine wouldn’t throw out his full day and cause his potential upset at nursery and although people thought it was mean, we found it actually worked really well for William and is something we will look at doing going forward. He came home, explored the living room, picked his favourite new toys and then ate his dinner. It was lovely to see him so calm.

Presents this year were amazing as our friends and family understand suitability and what William classes as high interest. I think the most amazing surprise was a handmade busy board from his uncle Jim. William immediate fell in love with all the fiddly bits and it has sat in the living room ever since for him to play with.
Every year I usually make William a cake but this year I purchased a premade ‘Hey Duggee’ cake and as you can see he was quite happy with it and ate too many pieces to count 🍰🍰🍰🍰 although I made sure his dad and I got at least one piece each.
We had a few nice doorstep visits from friends and family which really made the day special as we hadn’t seen them in such a long time. #covidsucks

School Allocations

I have written a lot about allocations in other posts and on our social media pages but I just wanted to include a little summary of what has happened so far…

  • February 15th – William was not considered for a special school place but may be considered during the moderation for his EHCP (highly unlikely)
  • March 2nd – Moderating should have taken place but didn’t 🙄
  • March 15th – Moderation went a head and no special school place given.
  • April 16th – Mainstream allocations released.

William did not get into his first choice of mainstream school… because why would he. They like to make things as hard as possible after all!

I now have to follow the appeal process which is due in on 21st May. This shouldn’t matter as I should be able to name our chosen school on his EHCP but the SENCO advised we should go ahead with appeal to cover all our bases. This doesn’t fill me with confidence when the system has let us down so many times already 😥

The Nappy Service

As I have mentioned previously the nappy service is available for children who have reached the age of four which meant that when William needed them they were unavailable to him until he turned 4. We were incredibly lucky because the amazing Essity stepped in and provided us with nappies until the service could be applied for. This saved us hundreds of pounds and lot of stress and we are so grateful for their help in what felt like a time we were forgotten about and fell into one of the many gaps in the system.

On Williams birthday his health visitor put the referral across and we now have the service in place, first delivery pending. The only issue I encountered once we were referred to this service was that we had been sent a certain nappy which was a type the service also use, ideally i wanted to remain on these as I knew the sizing and the fact they could hold up to Williams movements etc but apparently its a bit of a postcode lottery and because we are not in the East Riding we are not eligible for that brand 🙄 I’m not even sure why that matters but aparently it does.

The lady that called me was brilliant, she understood I was working and may have to dip in and out of the call. She went through many questions with me and it was actually a pleasure to speak to her but what really made things better for me about how I was feeling as a parent was this message…

I needed this and it made me cry 😭

Impaction

Warning this is about poo! 💩

One thing that came to light recently as a follow on from the nappy service call was that William may have an impaction in his bowels, we are unsure if this is just nature or if it is due to the many things he eats which are not food. I mean it was only the other day his dad had to pull carpet fibres out of his bum 🤢 I’m so glad that was on one of his dads days 🤣

They believe his problems going to toilet are not just because of a lazy bowel but because there is an impaction which hasn’t cleared and everything else is adding to it or coming around it.

We have been given additional Movicol and Laxido to try and help it clear but, if it doesn’t i’m not sure what will happen next other than the fact we have to go back to the doctors to check what our options are.

I am trying not to google or freak out but this is me after all so check back in shortly and I may be weeping at my desk!

Return of The Big Nanna

184 days… 184 long days!
297 days in total… almost a quarter of Williams life without his Big Nanna.

I don’t know how soulmates work, I thought I did but their bond proves me wrong completely; she is 91 and he is 4 and they just light each other up. Big nan is suddenly young again and William is suddenly capable of interacting on a much higher level, he sees her and I mean really sees her. He finds comfort in his Big nanna just like I did in her when I was a child. To him, she is home, safety, love and lots of snacks.

Family 🥰

She has had her vaccines and as lockdown is lifting, things can slowly get back to normal and our normal is seeing Big nanna every Sunday for snacks and snuggles.

I should be back on top of posting now so I will hopefully be back to post more regularly going forward.
As always please remember to subscribe down below.
Much Love M. x

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Posted in Appointments, EHCP Process

Transition meeting Pt. 1

I think terrified is the best way to describe how I am feeling about William transitioning into ab school setting from his nursery. The fear keeps me awake at night as I toss and turn thinking about how he will handle a new environment and different levels of support. When I think that his days at his amazing nursery are numbered it genuinely makes my sad.

This was William just over 2 years ago on his first day at nursery, he looks so young and baby faced. He loved it whilst I sat at home and cried. I didn’t think anyone could look after my child as well as I could but I was wrong… Over the last 2 years they have helped William and myself in more ways that I could have ever anticipated, they helped me understand some of his educational needs and pushed us through the right channels for support, funding and diagnosis. Thinking that his last days are slowly coming upon us brings tears to my eye, not a single tear or quiet tears but messy heartbroken sobs. I know it is almost time for him to continue on his educational journey but i’m not quite ready to say goodbye to them 😭😭😭

Today was part one of the transition meetings to get William into the right school with the right support. Unfortunately we still haven’t received his draft EHCP however we are aware that he has been banded as intensive for the level of support he needs which is the top level. Below are the definition and school needs for children branded due to Speech, Language and Communication difficulties as Intensive or severe provided by Hull Local Offer. William easily fits into the ‘Intensive’ category however after discussing with his SENCO; Lisa, he would standardly have been placed in ‘severe’ had he have been going to a specialised school as his level of support would have been less within that environment.

LevelDescriptorsCurriculum needs
SevereVery severe expressive and/or receptive language difficulties of a specific nature, which are significantly impacting on progress and social, emotional, and behavioural development. Child/young person of broadly average ability.
or
child/young person with a very severe communication disorder, which is significantly impacting on progress and social, emotional and behavioural development.
or
child/young person’s ability to receive communication is severely limited due to a language disorder or a profound difficulty in interpersonal interaction.   Child/young person may have emerging mental health difficulties and/or experience a high level of anxiety in most school situations.
Intensive programmes to develop understanding of language, expressive language, speech intelligibility and/or social communication skills. Intensive programmes to help the child/young person develop alternative or augmentative means of communication to a level commensurate with level of ability. Differentiated programmes of study to facilitate interaction with the curriculum either by oral, signing, symbol or written systems. Programmes of support to enable the child/young person to become competent users of communication aids / technology.  
IntensiveProfound speech, language and communication needs as a result of which a child at school entry age is only likely to function below the 12-month level in relation to these skills.
and
child/young person uses primitive gestures, a few signs/symbols and/or has almost no spoken language.
and
child/young person is unable to form words or make adequate use of augmentative systems of communication.
and
child/young person has severe limitations in the expression of intentional communication. or child/young person has significant physical difficulties, with less cognitive impairment, which require voice output communication aids.   The child/young person may have an accumulation of layered needs, which could include mental health, relationships, behavioural, physical, medical, sensory, communication & cognitive needs.
Child/young person needs very early (infant) developmental programmes in relation to language/communication. Child/young person requires intensive training to acquire the limited use of means of alternative communication systems (e.g., signs/symbols systems). Child/young person requires intensive programmes to develop pre-lingual articulatory skills (i.e., formation of sounds in words). Child/young person needs programmes of work which recognises their high level of dependency in relation to language and communication. Intensive programmes of support to enable the child/young person to become competent users of communication aids / technology.  

The guest stars in todays transition meeting
* Lisa – SENCO
* Jenny – Specialised school representative
* Zara – Williams 1:1 support from nursery
* Chris – Head of chosen mainstream school
* Me – Mom, stress head, emotional wreck etc

For those who has tuned in to my blog before will notice Val isn’t listed as Williams 1:1 support, sadly Val decided to take partial retirement which means she no longer works Williams days. This did make me very sad as Val is amazing with William (Please feel free to remember when I pitched a fit because he left Linda to go to Val 🤣 I soon ate my words about that one) however William loves Zara and she has been in the sunshine room with him all along so i am quite happy with the change and happy for val to have some well deserved rest.

I got to meet the head of our chosen mainstream school today and she seems very similar to the head teacher who was in place when I attentended in the 90’s. She asked me to tell her about William, nothing specific but my view on what he is like as a child. I got a little emotional explaining how loving he is in his own ways but it was nice to be asked, not about his development or what he can and cant do but about how he is as my son.

Our chosen mainstream has two classes for Williams age group with each having 30 children, he is currently in a setting of only 8 kids so the transition may be a big shock for him, the plan is currently to aim to start this by the autumn term which is October/November rather than the standard September term. It will be easier for William to adapt to his new setting if he is eased into it slowly, starting out with shorter days or weeks which are to be agreed once his EHCP is in place. When this finally does come through I can name our chosen school with the view of a specialised setting in the future (ideally the following year🙏🏻)
On top of the EHCP naming I am also following the standardised appeal process to cover all bases to ensure we don’t have another crushing disappointment like we did when it came to specialised school allocations but i’m not holding my breath. Any parent of a child with special needs will tell you how fucked up the system is and how you get used to being let down by a system that is supposed to ensure your child has the best possible care.

As always I will keep you posted on what is to come and stay tuned for a catch up on other things that have happened within the last few months 😊

Much Love M.x

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 autism and covid19, EHCP Process

Lockdown 3.0

It’s a strange time for everyone at the moment, no one wanted another national lockdown, but it was inevitable, and I do believe it’s for the best. I thought that after the new year I could get a little bit of my life back and can start having one but that will have to wait.

The problem with being alone is it gives you time to think and over analyse things such as school!! All the applications are in, the EHCP is in process and now I can only sit and wait and that is the bit I can’t cope with. The decision on special schools is usually made by the end of January so I should hear something no later than the middle of February but I’m now worried that they may be running behind on it because of Covid and I don’t think I can take it; the wait is already driving me crazy. If I go for worst case scenario which is middle of February, then its 35 days to wait. 35 days of freaking out about if he is going to get a place he so desperately needs and if he doesn’t, it’s even further away until the middle of April for mainstream allocations. I want to be optimistic, his EHCP is 90 pages long, his issues are profound and complex, and all parties involved have agreed it would be the best place for him but what if it just doesn’t happen? I have a whole new scenario to stress about. For someone who has lists about lists its really difficult to be able to plan for events you have no control over.

That’s exactly how I feel kid…

On a positive note, I have finished my level 2 in autism understanding and am awaiting my tutor to confirm if she passes the second module. I do feel confident about it to be honest and really enjoyed doing it, once my pass certificate arrives, I think I may do more, I have already scoped out two further courses; level 2 in challenging behaviour and a level 2 in learning difficulties, I think they will both come in handy for when I pick up some volunteer work when William starts school.

William is doing really well in his development; his eye contact has improved drastically, and he is getting very good at object exchange to show me what he wants. He even takes his own pots into the kitchen and only throw them about 10% of the time 😂 I know it doesn’t seem like a lot but to me it is amazing. To me a few seconds of eye contact can bring tears to my eyes.


We did have a few bad nights recently as William had some bowel issues 💩, he ended up in my bed for over three hours crying and needing me to rub his tummy. I wish I could take his issues away and make him feel better when he’s in pain.

I’m so grateful that nursery is still open during this lockdown as I am not sure how I would be able to work and look after him as he needs constant supervision. My head tells me that I should have made the decision to keep him off to protect us from potential contact with Covid but the disruption of his routine would also be hard on him and he has had enough of that recently. If possible I want things to remain normal for him.

We have lots of messy play planned for lockdown which I’m really excited about but may regret deeply 😂 We tried out slime in the bathtub which was super fun messy but totally worth it to see Williams face, not so much the having to clean the tub part.

Next on the list is finger painting so wish my upholstery good luck 🍀

Posted in Appointments, autism and covid19, PCP & TAF Meetings

PCP Meeting… Covid-19 edition. Pt2

First thing is first… Today is my birthday, I am officially 21 31. I don’t usually take the day off for my birthday however we had another PCP meeting so I thought Why not?
I am currently sat in my front garden on my old sofa in the sunshine (yes we are those neighbours but they are getting collected this week so its not that bad)

As you can see William has already claimed the best seat in the house.

The meeting attendees were myself & David, Jenny who is the who is part of the SLD outreach team for tweendykes, louise; our new health visitor, Lisa the early yars SENCO & Courtney who is acting manager at our nursery.

Just like the last PCP meeting this was to discuss and review Williams support plan to sed away for his EHCP. This will be finalised within a week for us to sign and agree ready to be sent off.

What we did find out is the next steps which is interesting….

  • It will first go to moderators who will asses the plan for 6 weeks(Who can decline it 😣)
  • Then it will be passed to educational psychologists who will carry out further assessments and potentially add to the plan
  • Between weeks 14-16 it will go back to the moderators
  • Then we will be sent a draft EHCP which we will have for 2 weeks to check and request any changes. At this point we can name a school.
    This will be banded at *Intensive *Severe *High or *Support
  • Then finally it will go back to the moderators who put all children wanting a place at a special school onto a big list and allocate places based on need and what they feel is the best fit for each child and their requirements. We should find out by the end of January 2021, which isn’t that far away when you think about it.

William isn’t automatically guaranteed to be entitled to a place in a special school so Lisa has advised us to look into the facilities the local mainstream schools have available in our area to have in mind as a back up so we will be reaching out to those shortly and will keep you posted about our findings. This for us would be worst case scenario as we know based on his GDD that a mainstream school is not the right environment for him to be able to continue to grow and learn so hopefully it wont come to that.

We have a TAF meeting due end of November/December to look at Williams funding in which we will also discuss the progress of the ECHP.

Anyway I’m off to eat copious amounts of cake and re-watch Harry Potter for the millionth time, you cant beat a good birthday tradition 🎂

Much Love, The Buckleys 😘