Posted in Appointments, EHCP Process, PCP & TAF Meetings

TAF Meeting… Part 4

So let me just take a moment to acknowledge how difficult things have been recently, William is sleeping less than usual and seems to be having more issues with his bowels than ever before… this means a grumpy, exhausted and sometimes hangry mummy at the best of times. Why did I chose before christmas to go on a diet. I’m missing out on soooooo many boxes of celebrations ๐Ÿ˜ญ

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


As someone who is not afraid to state that I am a pessimist, very neurotic and an overthink you can imagine how I feel going into any meetings and today I was filled with the same amount of dread, not because they’re awful but because no matter how prepared I think I am it never feels enough, at least emotionally.
There we go… self pity over with. ๐Ÿ™ƒ

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

Williams EHCP has been agreed to be assessed!!! ๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰ a huge relief that we havce gotten over the first hurdle and I don’t have to take it to appeal. It is now with the moderators and I am awaiting the educational psychologist to reach out and conduct their own assesments on William, after that has been done it will go back to the moderators who will band his assesment as either intensive, severe, high or support plan only and some time after that we will be sent the draft to approve. It feels like it has taken a long time to get to this point and even though we aren’t quite there yet it is a step in the right direction.

I love a good table so here is one showing Williams improvement over the last 6 months… Just look at all that green!!!! ๐Ÿคญ

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

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

I didn’t want to send William to a mainstream school, I felt it was admitting that a mainstream school can accommodate his needs and I don’t believe they can however today a little bit of reality hit me… I had discussed with William’s dad about keeping him out of school until he gets a place within a special school, it would mean we would have to rely on each other for child care in order for us both to work but we said we would do it however when I mentioned this at the meeting, the senco told me he may not get a place this year, next year or the one after and because their allocations are needs based there is no guessing the outcome. I knew… deep down I did know that it was a possibility but hearing it outloud was hard, I cried (thank god my webcam wasn’t on ๐ŸŽฅ) I was very vocal at admitting that I don’t think myself or William are ready for this next big step. It took me two years to send him to nursery!
However putting that aside, I have chosen three schools based on recommendations on their SEN facilities and Ofsted reports and when I am ready I will submit his application, its not due until 15th Jan so I may not be ready until Jan 14th but… I will do it because it is what is right. I think deciding to keep him out of school for a year was a big step but if there is no definitive end date then it is simply impractical and unfair on William. They have told me that they will continue to ensure William is thoroughly supported no matter the setting which based on the senco’s promises previous I 100% believe.
We have a meeting penciled in for March to discuss his transition from nursery to school as I ideally want to increase his days at nursery after easter so that it isn’t too much of a shock for him going to 5 full days.

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

I want to end on a laugh so let me tell you about William’s girlfriends at nursery…
William doesn’t really interact with other children however there is a girl in his class at nursery and she has has taken a liking to him and hugs him really tight every time she sees him to the point his key workers have to pry her off either so she doesn’t strangle him or after William gives them the ‘help me’ look.๐Ÿค—
So girl 2 doesn’t like William but she does like the sofa he has claimed in the reading nook, William doesn’t want to share his sofa so what the ladies do is seat them at separate ends of it. The girl is fine and quite happy but not for long… William lays all over her until she gets upset and then he laughs! and my mom tells me off for calling him a psychopath! ๐Ÿ˜‚

Much Love M.x

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 ๐Ÿ˜ฃ)
  • 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 ๐ŸŽ‚

Much Love, The Buckleys ๐Ÿ˜˜

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

PCP Meeting… Covid-19 edition

Just a little reminder of how happy Big nan is now she gets to see William xx

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 too๐Ÿคฎ) 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 ๐Ÿ™„)
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 independently in 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 ๐ŸŽˆ)
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.

Posted in Appointments, Dads Journey, PCP & TAF Meetings

TAF Meeting… Part 3

Dave here ๐Ÿ‘‹๐Ÿป I was trusted to attend a meeting solo as Marie had work commitments. This was a huge deal as she is always the one with the notebook who asks all the questions but I’m still alive so I guess I did well… ๐Ÿคž๐Ÿป

Firsty the wife loves a good snapchat filter but never smiles in any photo. She says she has resting bitch face. I say she is just a massive poser.

Secondly but more importantly can we just address the fact that William looks cute as hell. I do love a good dickie bow on him.

This picture was taken before went out for Big Nans 90th birthday party. 90!!! When you think of a 90 year old, you would never picture Big Nan. She acts younger than us sometimes and is so full of energy. She once cut through a small tree using a saw that only had about 3 teeth!



It was a great get together but the older generation don’t seem to understand what is wrong with William and asked thing like ‘will he get better?’ which is heartbreaking because the answer is ‘no’ but at the same time he isn’t poorly so the question isn’t relevant. The understanding we have now about ASD wasn’t available to them and is still a growing knowledgebase.

FYI – the consent forms for the ASD waiting list have been signed so we are just waiting for acceptance now but will keep you updated

I won’t lie and tell you I was looking forward to a solo meeting because I really wasn’t. I was nervous and worried I would say the wrong thing or not ask the right questions. Marie is always really prepared and has a notebook full of notes from every single meeting we have had so far. True to form she had made notes for me to guide me with questions and made sure I went armed with the notebook so I could update her as soon as I left.

As the meeting was at 9am getting to the nursery with the boy in tow in a buggy was difficult. It was raining which didn’t help the public transport situation and I struggled to get on a bus and had to wait for a third bus in order to be able to fit on one… after the second one went passed I was very grateful Marie wasn’t there as she would have been what I like to call ‘a bitch’ and I mean that with love but when she is stressed she gets angry and can be mean ๐Ÿ˜ข a bit like the incredible hulk… you wouldn’t like her when she’s angry.

The usual crew were all in attendance and Sarah our health visitor was late as usual. Health visitors are so overworked and underpaid that I am shocked she has time to attend at all and we are always grateful.

Let’s get the bullshit out the way first. There is apparently only an 18 month wait list for the ASD panel ๐Ÿคฅ they’ve hired new staff and it may be even less…
So firstly they haven’t hired new staff… they have connected with a company called Healios who are an online based company who allow people to connect with health professionals via video link. Since they have been on board the waiting list has reduced from 3 years to 2 years and 4 months. This is based on first appointments given to parents in our online support group and their referral date so unless they are recruiting their own staff as well I can’t see it reducing that much more.
Apparently a long wait is good at Williams age as diagnosis’ can be seen as a label and they don’t like to label younger children etc etc etc… I understand that but surely it should be done before school? and as it stands now it won’t be and it worries us that his needs may not be met without it.

Going forward William will be set targets by speech and language for us all to work together on to help him develop and improve but until then we aren’t fully sure what we are aiming for.
Lisa from Early Years Development will continue to assess his funding and ensure he has the right amount of support each term at nursery.

I also gained a little insight into what will happen next with the ASD panel. This is after our long wait… we will get a large questionnaire which will ask the same medical kind of questions Marie gets asked at every new meeting about her pregnancy and labour etc and about Williams behaviours.
They will then want to speak to us about day to day life and then in a separate session will observe William. I worry that if this is online that they won’t be able to get him to cooperate and we would have to wait even longer.
In some instances a diagnosis has been given then and there which would be great for us as everyone has said all along he has autism and a severe developmental delay BUT if they can’t do that they will do a ‘watch and wait’ this puts a stopper on it all for 6 to 12 months to see if anything changes. I’m not going to sugar coat it but I would be super pissed if we waited almost 2 and a half years to be told we needed to wait another year!

The paediatrician – she wasn’t at the meeting. Thank fuck.
Basically all parties had presumed she would have referred the boy to Physiotherapy due to his movement and the way he holds himself. When I told Marie this she was raging. The woman deffinately rubbed her up the wrong way and told me off. She was not a people person and if you’re good at your job it wouldn’t matter but apparently she isn’t either! We will chase this when we get our next appointment through. She did say it may be with another paediatrician so here’s hoping ๐Ÿคž๐Ÿป

Check out this adorable moment!

William has started sorting his toys and will collect certain types and compile them.

Here he is taking all his trains to the dog ๐Ÿ•

In our last TAF meeting it was devastating to hear that the boy was only at the age of 9-11 months developmentally and as you may have read it hit me really hard and it took a while to get my head around things and I would love to say I have done this fully but there are still some things I struggle with so I had barely slept the night before thinking there would be no improvement (we had seem some but it hard to trust ourselves if that makes sense) and then I would have to break the news to Marie.
so…
He is still in the 9 to 11 month development bracket but is slowly emerging into the up to 20 month bracket. He isn’t there yet but there had been no improvement at all in the last meeting so this to us was amazing! and it’s rare we get good news about his development so it was wonderful to hear. Even slow progress is better than no progress.

There was a lot of discussion about an EHCP and his future education but since the wife knows more about that than I do I will let her fill you in at some point.

‘You are already doing a great job at home to help’

This a quote by from Lisa from Early Years Development. It brought a tear to my eye and when Marie found out she cried happy tears.

I bet you are all totally impressed with my note taking skills, I had a great way to make sure I documented everything to be able to relay info… I had my phone recording in my pocket ๐Ÿคซ

Posted in Appointments, PCP & TAF Meetings

The ‘TAF’ Meeting Part 2

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 ๐Ÿ’”
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 ๐Ÿซ 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 home๐Ÿก

And now for the bad…๐Ÿ˜ข

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 waitingโŒš apparently we are near the top of the list, have been allocated a therapist but it won’t be until next year)
  • The Nursery

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 ๐ŸšŒ 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 โœจ
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!๐Ÿ˜ก)
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.

Posted in Appointments, PCP & TAF Meetings

The ‘TAF’ Meeting

William was sent home from nursery with a letter inviting us to a ‘TAF Meeting’ on 5th August 2019. It was just slipped into his bag like it was nothing. What is a TAF meeting? We had no idea and no one explained it to us so obviously I turned to the internet.

The internet is a wonderful thing but also an evil thing and you shouldn’t believe everything you read from unknown sources but that didn’t stop me… phrases swam around on my laptop like. ‘child at risk’ and ‘social services involvement’
I should have just called the nursery or my health visitor and asked what the meeting would entail but my fear and anxiety stopped me. I would rather be ill informed with my head in the sand.

We are very lucky to have a great support network and my boss Debs who also happens to be my best friend (no special treatment. I promise) forced me to take the day off work to attend as initially I was going to let Dave handle it on his own which I know is really selfish of me but I wasn’t in the right mental place to hear bad news. The Hobmans, Debs and a small group of other people had slowly been dripping the idea to us that William needed extra support so that when we were finally ready to admit it to ourselves they were on hand with their knowledge which they had accumulated whilst we were busy brushing them off. We are incredibly grateful for this even though we may not have said it at the time. Without the likes of my amazing mum and friends we may not be where we are now. So please if you are starting your own journeys look at your family and friends and truly appreciate them for what they are. A support network who will sooth you when you cry, listen when you are angry and give you a life vest when you feel like you are drowning.

We went into the meeting completely unprepared and scared about what would be said and how these people would judge us. I took a notebook and made 3 notes that to this day I have no idea what I had written. Just indecipherable words.

It was after this day I made our first public post on facebook…

The post

My facebook is private and I only accept people I know well so I was shocked when I started receiving messages from people on my friends list about how they are going through the same, have concerns about their children or have been down this route and had a diagnosis etc.

I had felt so alone in what I was going through and had no idea there were so many others out there. I decided I would keep posting updates so people could follow our journey. It then stopped been because people were mean behind our back and became about reaching out to people like ourselves.