Posted in Emotions

Inclusion

Let’s talk about inclusion… as an adult, I can honestly say that I genuinely like my own company. It’s much harder to end up in an argument although not impossible. 🤣

We worry about our kids been included in the playground, getting invites for parties and things of the like but as a parent of a child with special needs inclusion is something we worry about for everything. Will I be able to navigate his adaptive stroller around that shop, do the disabled toilets have a suitable changing facility? Will that cafe or restaurant understand that he may be noisy and throw his food?

I feel uncomfortable in situations in which it is obvious that William is uncomfortable, it’s mainly because I still worry about what other people think and I’m not sure that will get go away but I hope it does.

I recently attended an event, or a gathering of sorts and I had the strangest experience, something that I have never experienced before; total all-encompassing inclusion and understanding. It sounds really strange to say this, but I have taken William to places that should have been safe for us, but they weren’t. I was terrified of doing a first new place/event, as I usually am because let’s face it, I can be the queen of anxiety and overthinking and believe me I had been doing a lot of it in the run up.  What if I William had a meltdown? What if people didn’t understand?

I panic about going to my parents or big nanna’s and they’re regular occurrences so its natural that I would panic about somewhere else, I often have my mom or my friend on a standby in case William doesn’t cope with new places or people and it’s a silly thing to think I have to do but it is just one of those things.

I guess what I am trying to say is sometimes you have to take that leap of faith, whether that is faith in a person, an event or yourself. If you’re not willing to try then how will you ever experience new things, how can you write people off as not understanding your child if you’re not giving them the opportunity to do so. In a world of people that can be judgmental and cruel, there are still people who are kind and accepting, people who include our children without trying.

Inclusion is something we all crave, whether we like to admit it or not, it can be in conversation at the dinner table, inclusion in a game of football on the park or in our case it’s the inclusion into society or inclusion into people’s lives. Its something we can take for granted when we are neurotypical, I know before having William it wasn’t something I even thought about but now the thoughts can be all consuming.

Today’s post it to simply say, think about what you are doing, think about the child that you may class as a little odd, think about birthday parties and events, think about how you would feel to be excluded, then think about how it would feel if the sole reason behind it, was because of who you were; something you have no control over.

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 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 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 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