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)
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 🎂
We take the same notebook to every single meeting, it wasn’t an expensive book; in fact I think it was a freebie from a company my work engages with on twitter but this random book has become a symbol for us, a record and a reference guide. It has been to every meeting without fail and contains scribble and tears (maybe snot too🤮) We need to start looking for a replacement as its almost time to retire this one, and by retire I mean put into storage in case we need it for reference in the future. I’ve bought loads of new notebooks but non of them are quite right. I know it may sound silly as it’s just a pretty ordinary notebook but it symbolizes our journey.
I’m not sure if everyone’s experience with PCP meetings are like ours but it wasn’t what we expected. We were sent a copy of William’s support plan yesterday to prepare us for today and were asked to look through it and focus specifically on his areas of need. Both Dave and myself sat down and picked apart this plan and what other professionals had written either agreeing, amending or adding & removing and making notes in our trusty blue notebook ready to question parts we didn’t understand or needed clarification. The support plan is twenty-six pages long and that is with a small font!
The call was at 3pm and I had volunteered to work until shortly before so that I didn’t sit dwelling on it all day, luckily Dave wasn’t back at work until this evening so he was able to look after William. Meetings are very different in the current climate so instead of having to travel to the nursery we had to, usually in silence with a few passive aggressive comments we had to gather round my desk and tune in to a Microsoft teams meeting (I spend my entire working day on teams 🙄) We expected a woman from our school of choice to attend the meeting but she was busy which is understandable but disappointing. More concerning is that our nursery representative couldn’t figure out how to work Teams. We expected to go through the points raised on the support plan and be able to put our input in whilst on the call but this was not the case, Our SENCO spoke through was each section of the plan and told us that until I next meeting we were to input our thought on Williams strengths and needs focusing on his worst days because that would be when he needs the most support. There were parts that weren’t relevant to William which had confused us last night and should have been deleted but we got some clarification which was good.
I must say the SENCO Lisa is fab, she answered numerous neurotic emails from me during lockdown and told me and the nursery (who was on Lisa’s mobile on speaking in the background) what needed to be written or included.
I think the main focus of this meeting was to discuss what will happen in the run up, during and after our next meeting. This disappointed Dave as I think he expected more from the meeting in general and didn’t take as much from it as I did.
SMART Targets have been set for William and what they are aiming for him to achieve within the next four years.
To be able to use objects, images and timetables as a point of reference in order to follow a routine. (They believe this one should be achievable by the end of the year depending on how much William regresses when he goes back to nursery)
To independently engage with a wider range of activities and toys.
Communicate my wants and needs to familiar people.
Explore a range of unfamiliar environments and activities independentlyin various ways.
Its great to see they have targets and what was very impressive is the steps they already had in place to ensure he is on his way to these, no matter how slowly.
I’m not sure if we have mention previously but William has Global Developmental Delay (GDD) and currently William is classed as being in the 0 – 11 months age bracket. He has developed in almost every area barring one into the 8 – 20 months bracket. The one that he is struggling with revolves around language and communication, hopefully he will progress when he goes back to nursery so he will officially be in the higher bracket. I said to Debs tonight that’s its really daft as it is just label to put on him but it feels really important for us to have it, to know where he is on the scale and that he has moved from one to the other.
The next step is for us to add to this pan and submit it before the end of next month in time for our next meeting which is 21st September (Happy Birthday Me 🎈) This next meeting will be to finalise the support plan to submit for EHCP assessment which will take 20 weeks from submittal to be confirmed. We should get a draft back after 16 weeks to approve or edit.
Our intention to send William to a specialised school has been documented and admissions are fully aware that that is our intention. This doesn’t guarantee him a space but at least he is on their radar which can only be a good thing ready for the application process later in the year.
Gavin Williamson our current Secretary of State for Education has made a ‘temporary’ amendment in regards to EHCPs. In my basic understanding an EHCP is a document which outlines the needs a child has in regards to their education and the local authority must adhere to it.
This amendment in laments terms basically means that EHCPs are now pretty much null and void. It’s completely understandable that the government would do something like this to protect themselves in such unprecedented times.
Most parents will understand this amendment as it’s not reasonably possible for an EHCP to be followed to the letter when schools are closed to the majority and social distancing needs to be enforced.
As you can imagine, me being the neurotic mess I am immediately panicked… William doesn’t have his in place yet, what if we can’t get one? He can’t get into a school that will meet his needs. He will fall further and further behind… the whirlwind in my mind went on and on 🌪
I reached out to Lisa who is the SENCO for early years to find out if and how this would affect us. Luckily new applications are still being accepted which has put my mind at ease (a little) as without one we can not apply to go to our school of choice which we are almost agreed upon. 🤣
Our PCP meeting is still due to take place over email or Skype or in some other technological way 👩💻 which is brilliant as we can get the ball rolling despite the current situation.
My main worry is the ‘temporary’ part of this announcement. When it’s safe to leave the house and get back to what will be put new normal, will EHCPs be enforceable again? Or will there be another reason to suspend them.
I worry about what’s going to happen in the future for the children with special needs. The world is only just starting to understand ASD and I worry this will set us as parents of these children back in our fight to get out children the best possible care.
William himself has had some amazing days recently. He’s spent a lot of time in the garden and engaging with our neighbours especially when food is involved 🍲 honestly he’s like a little zombie trying to get brains 🧟♂️
After the good days there is always a few bad. He’s not eating like he normally does. He doesn’t want to spend time with me… which is understandable but he doesn’t even want to spend time with Rusty 🐕 which is almost unheard of.
The nights he wont sleep and cant be settled are upon us. I feel so useless on these nights and could quite often sit and cry with him… pathetic I know.
Then the (disgusting) icing on the cake… this morning he was on top form and spread poo all over his room and himself. He was literally as happy as a pig in shit. 🐖 Then comes the trauma of having to hose him down and clean poo off his face and every other surface. It was like that scene in psycho. 🔪🚿
There are a few words everyone single person in the world is fed up of hearing right now so I will just get them out of the way… * Coronavirus * Quarantine * Lockdown * Furlough
Not many people think like me but if you read my last post you will be aware that I rely on my job for a little break; a cheeky three day holiday in which I am not Mummy but I am Marie and Marie never has snot or other bodily fluids on her clothes, Marie very rarely has to speak to her colleagues in baby-talk and she can have a conversation which doesn’t end up getting hit or bitten. I love been a mom but I need that time to be Marie… Sometimes I forget who she is.
I know it was a risky thing to want but my goal was to stay in my office as long as possible, to maintain my routine (and in turn Williams) but also to keep hold of my sanity. I cried when I was told I would be needed to work from home, not just little tears but load messy ones. 😭
Dave tried really hard to let me work in peace in my little office/bedroom but it proved a little too difficult to forget I was there, especially during a particularly bad nappy explosion which I would have usually avoided had I been at work.
I made it through two shifts, The Wednesday of the first week and the Monday of the second. I’m not going to lie I probably did more work on those days that I would have done at the office because there were no distractions, Head phones on, blinds open and frantically typing away. On the Monday an email came out stating furloughs were on the cards and would be discussed with our line manager that day who would be in touch… Hours felt like days and then the call came. I was being furloughed and would not be allowed to work until further notice… this was indefinitely with no end date in sight. From a business perspective it makes perfect sense and I knew I would be one of the first on the list because lets face it. How much training can I do on my own in my bedroom. I had loads of material to work on but that isn’t a necessity. My complete access was revoked within 2 hours… ‘HELLO!!! I STILL WORK THERE!!!’ I can’t even sign into my laptop to write on here or play bloody solitaire. I can’t do anything… indefinitely. My anxiety kicked in; I didn’t finish my last presentation! would I ever finish it? It was really good, or I think it was but I can’t even check!
I’m still getting paid which is amazing as it means I can still provide for my little family but it does worry me that if this doesn’t end soon will all of us on furlough be first on the chopping block for redundancies… As HR put it: My role was identified as one in which the work can be absorbed by other areas of the business… what if they realise this can be done permanently? Now I have this little nagging feeling that I made a mistake when I changed my contract even though it made me eligible for my new role and I love my job but the little niggle is still there and i know it is completely irrational. I mean I know my work didn’t release this virus to get rid of me but that doesn’t stop my brain thinking all sorts 😷
William has been on top form since nursery closed its doors about three weeks ago. If you have read any of our previous blogs you will be well aware we are all slaves to his routine because he can not handle any changes. Plus lets add Chicken Pox to the mix because things aren’t difficult enough for him!!!
One of the first things that happens when something changes in his routine is that he stops eating and since food is such a high motivator for him that it is always a massive concern to us. He usually goes one or two days and will not eat a single thing, no matter how many of his favourite things we try to bribe him with. Popcorn – NO Cake – NO Sprouts – NO Chips – NO Mummy’s flesh – ALWAYS!
After a while he will start picking at small amounts. The dog loves these days as William will bring food to his mouth but then throw it behind him or just shove the full plate to the floor. Rusty eats so well on these days 🐕
The following day he will be ravenous and will demolish adult sized portions and then start on mine and Dave’s too. Occasionally the dogs and almost always any bits of paper he can get his hands (or should I say teeth) on. Unfortunately his poo doesn’t come gift wrapped like I so often joke.
Speaking of shit… Williams Neurodevelopmental paediatrician says its not uncommon for children with autism to have ‘lazy’ bowels which makes sense as he has never been regular but when it finally comes its usually uncontrollable and smeared all over his bedroom 💩 He doesn’t even care when he has been (the phrase happy as a pig in shit has never been so true 🐷) so it often goes unnoticed until the smell hits us 🤮 however there has been an exception recently… during a nappy change he crawled onto my lap for a cuddle or so i thought. He giggled and pooed all over me!!!
The other day on one of his no food days William decided he didn’t want to be anywhere near me all day. He stayed in the same spot on the sofa only moving to lift his arm for his juice. He didn’t sleep, he just laid there for hours staring into space. after a few hours he crawled on to my lap and curled up like one of those yappy little Yorkshire terrier type dogs. It was cute and I felt privileged he had come to me for some comfort. I welled up a little and stroked his hair and in return he threw up all over both of us and then for good measure all over the rug too 🤮 Every parent has to deal with messy incidents but William absolutely detests getting s bath or shower so it always results in more trauma for him… and us.
As time has passed he understands what no means but choose not to listen. He will stop what he’s doing, pretend to do something else and then decided to do it anyway. Last Thursday he was doing everything he usually knows not to, The things that could result in him getting hurt. He climbed on top of the TV stand and tried to pull the TV over… “William No!” He climbed the dining table and threw the contents to the floor… “William No!” He rattled all the kitchen cupboards. Purposefully spilt his drink on the floor. Fed the dog his breakfast. Threw the plate on the floor. Hit me when he realised he had no food left and then preceded to flip his table and chair. “No!” “No!” “No!” After a few hours I had to lock myself in the bathroom to get away from my 3 year old and have a cry… He cried the entire time I was in there whilst rattling the door handle #badmom I just needed a few minuets to let it out away from him and compose myself as he doesn’t understand when I’m upset or frustrated.
He knows I shouldn’t be at home, He knows he should be at nursery and he knows when he hasn’t seen Big Nanna. I don’t know if he will get used to this craziness and I don’t know if I want him to? I’m praying this ends soon. If he gets used to it things will be easier for us but then we will have the same battle on our hands if things get back to normal… not if! WHEN!! WHEN THINGS GET BACK TO NORMAL!
We call Big Nanna every day so he can hear her voice and she can hear him laugh and chunter…She sings round and round the garden to him and I do the actions. It adds a small amount of normality and routine to our long days but it makes me sad. He has a certain smile that he saves only for her and I miss seeing it. I miss seeing Nan’s face when he immediately leads her to the biscuit barrel or the mischief in his face when he finds both doilies in her living room and places them together (usually on the floor) The bond they have is so special and if i’m honest it makes me a little jealous sometimes but I wouldn’t change it for the world.
I worry about Williams development now more than ever as he has been showing slow but wonderful improvements recently after a lengthy period of no change or even regression and I panic in case this drastic change causes him to regress again and it was devastating last time but he is slowly edging into the up to twenty months bracket and I really want him to get there. No movement is better than moving backwards but only time will tell. Will this be over in time for his PCP meeting in May. They told us it was a really important meeting to get his EHCP in place ready to start applying for schools in winter. Will this happen? What if because of this virus we can’t have our meeting, meaning he doesn’t have an EHCP, meaning we can’t get him into a school that would be suitable for his needs? Lisa (early years team) called to check we were OK and asked me to call her if I needed anything. Why didn’t I ask her these questions? If there is no end in sight by middle of April I will call her. I also need to chase his blood tests and genetics testing as we never heard anything and we are unlikely to do so now. Also no follow up appointment with his Neurodevelopmental paediatrician. Its crazy because its not essential healthcare but it is to my boy! it is to me! I feel utterly selfish thinking about these things but if I don’t who will?
How the hell are you three already? It feels like yesterday I held you in my arms for the first time (and then proceeded to throw up everywhere 🤮) Three years down the line and we still sneak into your room to check you are breathing, although usually we can hear you snoring from the landing now😴 That’s 1095 days (1096 since this year was a leap year) of you. Every day filled with the joy we feel at being parents to such a loving little boy. Every one of those days teaches us something new about you and the world you creating for yourself. You have made us become stronger parents and people than we ever thought we could be. We have learnt to fight for what is needed for you or even us as a family.
Its been a weird year. Its been a year of acceptance and education for us as parents; this time last year we were both in denial about Williams issues and we struggled to even speak to each other about it. Phrases like ‘He’s just lazy’, ‘He can hear you but he’s just ignorant’ or explaining away his missed milestones ‘Well he is very top heavy with his little bobble head’ (still true but not an excuse just a trait from the Hobman gene pool 🤣) This time last year we were preparing for the 2 year check and the questionnaire had not yet arrived… but when it did we had a moment of clarity that all parents should have and agreed to be brutally honest about what he can and cant do. We filled it in with pencil and rubbed out so many times. We both took the time off work to make sure we could go together and keep each other honest. It was hard. Those of you that have reading this since we started it will have travelled with us on that journey and felt what we felt. Cried when we cried and gotten angry when we have. We have had meetings about meetings, meetings about plans and a few meetings which actually resulted in action.
When we moved house in summer we decided to put Williams name down for the nursery that is attached to what we thought would be his school in the future… We are yet to receive a call to offer him a place in the nursery but I can categorically say we would turn it down. His current nursery have been amazing meeting his additional needs which is why we haven’t moved him and make the dreaded public transport trek back to our old stomping ground. They have been so supportive with us as parents and helped progress us through his journey more than we could have ever hoped. They source funding and provided one on one support with Val who is amazing with William and so knowledgeable about up to date processes for children with sensory issues, speech delays and more. They’ve arranged specialists to come in and assess William for any other issues he had been facing and kept us so up to date with his progress both developmentally and socially. They arrange quarterly meetings to discuss next steps with us and all the professionals involved with William to ensure we are all signing from the same hymn sheet 🎶 If any one reading this wants any information on his nursery for their children please contact us via our ‘Lets Talk!’ page.
What a difference a few hours make… I often draft my posts and come back to them if I get too emotional or life gets in the way, I won’t take back anything nice I said about nursery as its all so true HOWEVER… today william came home with 2 bite marks. NOT 1 BUT 2 OF THEM! Apparently 2 separate instances today and there have been 2 others on different days!
Thats 4 different bites over the last month. I understand that children with complex needs can lash out or simply not understand what they doing especially as William has bitten me on occasion however as William should have 1 on 1 support 100% of his time there you would imagine these could have been preventable or at least the second instance today! If it’s the same child (dont care which one) then safeguarding should be in place so that supervision is on hand at all times.
If William has been bitten four times how many other children have been???
I have reached out to the manager to find out what is happening and what they are putting in place to prevent these incidents going forward so I will keep you updated on that.
We are in a little bit of an appointment limbo right now, for the first few months we had multiple appointments and now we only have one in the pipeline which is 2 months away. Don’t get me wrong it is an important one as its the PCP meeting (Parent Centred Planning meeting) to discuss his future education and where best would meet his needs. We will then put steps in place to obtain an EHCP (Education, Health and Care Plan) which will ensure he receives the support he needs when he transitions from nursery to primary school.
I think we have both come to the conclusion that as things stand now that William will need to attend a specialised school who can cater to his specific needs however places in these kinds of schools are very limited as it is a massively underfunded sector. Money is often ploughed into hubs at mainstream schools which has provisions for children with additional needs however any child placed into one of these hubs is a child that thats needs to be in a specialised school and just watching the parents of children starting school this year talking about it on my support group was heart wrenching and filled me with a low burning anxiety that doesn’t seem to be going anywhere any time soon.
We have received reports back from speech and language and IPass confirming verbatim what they had told us after their visits to nursery. They both contain what will happen next but no dates so we are just waiting for further info like with everything else. Just like waiting for his blood tests and genetics testing… just waiting for them to hit the mat in an afternoon 📫(our postman likes a lie in)
It’s just the long wait now… sorry I mean the long wait just continues now.
No confirmation as of yet that William has been accepted on to the ASD Panel list but again we are waiting for it.
Tuesday 19th November 2019… We were going into today’s meeting much more prepared than its predecessor. We went armed with my trusty notebook full of comments, questions and observations.
‘TAF’ meetings – Team around family meetings. They basically do as they say on the tin. Its a meeting in which the agencies involved in Williams development get together with his family to make sure we are all on the same page in order to help William as he gets older and to make sure we are all doing what is best for him.
Today’s guest appearances came from a member of the Early Years Development Team from Hull City Council. I never remember her name but she is lovely so I will make sure I find out. Sarah, our Health Visitor and Val, his key worker in nursery who specializes in SEN (special educational needs)
As always there is always good and bad news whenever we have an update…
Unfortunately all parties agreed that there had been little to no progress in regards to Williams development since he was initially granted level 2 funding. This was very disheartening even though we agreed with it 💔 He has now been awarded Level 1 funding which means Val will be with him all the time at nursery. This unfortunately means he won’t be spending any time with Linda which may cause a slight regression in his behaviour due to their bond but will be for the best as she isn’t SEN trained and can’t do some of things with him that Val can.
We touched on the subject of schooling 🏫 and whether he would attended a special school, a standard mainstream school or a mainstream school with special needs provisions. Although it is too early to make a decision we are putting steps in place to ensure that no matter where he enrolls he has all the support he needs. This includes setting up a PCP (person centered planning meeting) which is to help plan certain aspects of Williams future. Starting the EHCP (educational health and care plan) process. This is needed to be put in place to ensure William would be granted a place at whichever school would be best for him regardless of catchment areas. A referral is also being sent to the Outreach Team that deal with Ganton & Tweendykes special schools who can help support him both at nursery and at home🏡
And now for the bad…😢
Williams referral to the Autism Panel (this is a bit like the X-Factor panel but not as shit) mentioned in my previous post was stuck in limbo. Based on the Paediatricians letter he expected our GP to do the referral. We had called them the day after the letter was sent and they had confirmed it was received and they would process it. BUT… It turns out that GP’s can no longer submit referrals of this kind and it can only be done by…
A Paediatrician (WTF! why didn’t he do it?)
A speech and language therapist (We are still waiting⌚ apparently we are near the top of the list, have been allocated a therapist but it won’t be until next year)
Sarah said as this has recently just changed she will speak with our GP, confirm what is happening and if nothing was in place she would call the nursery manager and ask her to put the referral though. She promised to let us know later that day.
We knew from an early age that William was struggling developmentally but today it was confirmed exactly how much of a delay there was. His current development is within the age group of 0 – 11 months. This hit us like a bus 🚌 as neither of us imagined he was that far behind. This doesn’t mean he can’t catch up to his real age but the wider the gap the more difficult things will become for him but we can only take each day as it comes.
Sarah called later that day as promised showing us yet again what a superstar she is ✨ No referral was in place! She advised she wasn’t going to ask the nursery to do it… My heart sank until she explained why. She has asked our GP to refer us back to a paediatrician who can assess William to rule out any other issues and make the referral to the ASD (autism spectrum disorder) Panel. This would prevent any further delays down the line should he undertake a Triage (this is an assessment to see if he actually needs to go to the ASD Panel at all) and they ask for this then delays his diagnosis even further (No fucking wonder there is a 2 – 3 year wait!😡) She will chase this up for us in a few weeks if we haven’t heard anything. I honestly couldn’t praise Sarah enough for all the support she gives us.
When Dave and I left the meeting we agreed not to talk about it until we got home to let it all sink in. We don’t drive so it was a very silent and uncomfortable bus ride. Our discussion was so positive about what we can do for him in the future, how we will handle any obstacles and how much we love him.
But Dave wasn’t feeling positive and he was trying to be strong for me. He was devastated and broke down. ‘I just want him to be happy’ he cried. And then I cried. Not because I thought William was going to be unhappy but because Dave was crying and he had all the same fears as me. ‘He is happy and we will keep him that way. Today’s meeting doesn’t change that‘ Dave has seen the same videos you guys probably have of Autistic children have meltdown in the middle of things that most people take for granted like getting a haircut (we have cut Williams hair may times including once when I was using the clippers and the guard fell off… we had a bald child for a while), going food shopping or a change to their routine etc.
We will cope with these things if they arise. We may not cope well but together we will do it.