Posted in Appointments

Hello

Its a Monday and when I was office based it used to be my favourite day of the week but not anymore, today feel like the most Monday-ist Monday ever! In the words of that Geldof prick and school shooter Brenda Spencer… ‘I don’t like Mondays.’

Today me got to meet our new health visitor; Louise. we all know how much we rated Sarah so she does have a lot to live up to. Louise has been the health visitor for our area for 15 years which is a long time for a health visitor to remain in the profession.

She turned up in full PPE as you would expect in todays current climate, Mask, goggles, gloves and full length plastic apron. Brilliant first impression… the neighbours must think we either stink or are getting fumigated ๐Ÿฆจ๐Ÿคฃ

She introduced herself and immediately jumped into questions about William, I must say the sceptic in me immediately though she hadn’t read his notes but she was also referring to him and wanted a thorough picture for herself of his capabilities and behaviours.

She confirmed she will be attending next Mondays meeting about his EHCP just like Sarah used to despite not receiving the official invitation.

Before I could even ask her about the Nappy Service she told me she had looked into our request and there was no leeway with him being under four, again this impressed me that she had looked into things that we had hit brick walls with without having to be asked. This one was on my little things I had written down during the months I was unable to speak with Sarah.

She has decided to put us through to a sleep specialist to help us hopefully get William to sleep easier and keep him asleep, this will involve lots of assessments and advice before potentially leading to medication such as melatonin.
Melatonin will help most kids fall to sleep but not all… The problem is some parents believe it will help a child who is procrastinating going to bed, stop a child waking up early or having nightmares but that isn’t the case. Melatonin is usually a natural hormone that our brains release in order to help us fall to sleep. Melatonin supplements are available easily online but they are NOT regulated and may do more harm than good. If you are considering Melatonin please ensure you speak to a professional before buying something that you cant be 100% sure of what’s in it. There are concerns that because melatonin is a hormone that it may effect your child’s development when they hit puberty and it is something we will need to consider deeply if we reach that stage.

I asked her to refer us to Wheelchair services so we can get a specialised buggy but she wasn’t sure if she was able to do so. she said she would be in touch about it and… within 2 hours of her leaving our house she was on the phone advising us of who we need to speak to as only two organisations can make that referral, Occupational health and Physiotherapy but William doesn’t need any of these ๐Ÿ˜• Its not that he can’t walk. Far from it. Its when he does walk he will drop to the floor in a floppy state no matter where he is including roads, its the fact he has no danger awareness and a buggy at times he goes floppy or has a meltdown would prevent him from getting hurt. I’ve lost count of the amount of time Dave has had to stop cars because or child is laid in the street. ๐Ÿš— we have spoken to our G.P surgery and have a telephone consultation booked next week for the doctor to decide if its appropriate for him to refer us ๐Ÿ™„

I’m not sure if we mentioned the questionnaires that are sent out prior to a child’s development check up but they have always been brutal to us. They focus on what children should be doing for their age group and as we are all aware William isn’t at his age group so it was a lot of negatives for us. These are called the Ages & stages questionnaires and unless I am mistaken are to identify children who may have developmental disabilities.
He will now be assessed based on the Nelson scale which focuses on the age he is at for each area rather than where he should be for his actual age. I think this will be much easier to help us understand the next steps in his development. We see little improvements and new achievements but we find that the standard ages and stages just doesn’t celebrate or include those and will continue to score zeros despite developing slowly at his own pace.

On the plus she has weighed and measured him and he is in the 25th percentile which is where he has been all along. This made me feel so much better about his eating habits as I do worry he may be underweight but apparently he is perfectly healthy… which is always good to hear.

I think because Sarah was all we had know for 4 years we held her on a pedestal and it was unfair to presume Louise would be inferior to her. She has already made a brilliant first impression but I guess I’m just skeptical due to the amount of agencies who have failed to uphold their promises but Louise seems really promising and honest and I guess that’s all we can ask for. She will only be with us until William starts school in a years time in which the school support will take over… if we get in but thats a whole other worry for another day.

As always, much love from The Buckley’s ๐Ÿ˜˜ xxx

Posted in Appointments, autism and covid19

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 autism and covid19, Autism In The News

EHCP Announcement part 2

Remember when I last posted about the ‘temporary’ suspension to EHCP’s?
Remember how I worried that it wouldn’t temporary?

I hate to say I told you so but the suspension has now been extended further until 30th June… This could be extended even further closer to the time.


In case you are unaware an EHCP is an Education, Health & Care Plan which is a legally binding document that is written by the Local Authority (with parental and other professionals help) regarding a childโ€™s additional educational and care needs. The plan outlines the type of support or intervention that the child will receive to ensure that their needs are being met.

Due to the coronavirus pandemic I did understand why this had been placed on hold due to the changes which schools were facing in regards to social distancing and how many staff and pupils in a room etc however June 1st is the day they have been pushing for kids to go back to school but with the latest announcement it seems they didn’t mean all kids, they didn’t mean the kids that need additional support.

“Make no mistake, I want the UK to be the best place in the world to educate your child and make the most of peopleโ€™s talents.

Gavin Williamson, Education Secretary

This was taken from a speech Mr Williamson gave about his plans for post-Brexit education. He focus on improving technical education and welcoming international students, what Gavin missed out in his little speech was education for the already under funded and overlooked SEN children.

The new announcement is disappointing but not surprising.

Instead of Mr Williams sharing any of this to his twitter account instead he shared this…

‘Hello NSPCC? I would like to report countrywide neglect of those with special educational needs.’

I suppose we will have to wait until the end of June to see if this suspension of pivotal EHCPs is lifted, I for one will not be holding my breath.

Posted in Appointments

Triage

Its not a word you would usually come across in day to day life.
When I think of it I used to be reminded of the scene in Pearl Harbour in which the nurses have to mark the wounded men with lipstick.

For us triage is part one of a much bigger process, a process that has consumed our lives and will continue to do so until William receives a diagnosis.
William’s triage appointment was today… As you can understand due to the current pandemic this appointment is not face to face but instead was done over the phone.

I’m not going to lie to you and tell you I slept well (or even at all) last night waiting for this call, the crazy irrational thoughts kept me awake…
‘what if they decide he doesn’t need to be on the waiting list and we have to start afresh in a different sector’
‘what if they say he is the way he is because we are shit parents’

What if I don’t say the right things?’

I know it’s irrational and crazy and so does Dave or at least that’s what he told me at daft o’clock this morning when I was still awake trying to ask Dr Google what they will be asking us.
Not that it helped any way as we couldn’t find a list of questions anywhere โ“โ“โ“Not very helpful for ridiculously anxious people like me who like to be prepared for everything.
This notebook (which I just had to find and get ready at for 4am to be prepared for a 10am call) has been with me to every appointment. The writing is messy and blurred from tears. Anybody but me would find it indecipherable but I take great comfort in knowing I have it and can refer to it when needed. It is like a comfort blanket and knowing I look over it to see what meetings we have had, what questions we have asked and what answers we have and have not received makes me feel like I am a better parent than I am.

The call came in literally as the clock ticked over to 10am, I was mid wee ๐Ÿ˜ณ Appointments are never on time so I was sure this one would be the same. The woman was called Emma Gibson and she gave off good vibes if that makes sense. Pleasant to speak to, not too clinical and had a friendly tone to her voice.

So I made notes (shocking) in my little book about each question asked so that anyone reading this waiting for their triage appointment can have a rough guideline to take the anxiety off a little. Each lead to other questions so this will not be a comprehensive list.

  • When did you first notice something was wrong?
    Holy shit she went straight in there with the bullet to the head! ๐Ÿ˜”๐Ÿ”ซ
    As many of you will know already it took a long time for us to openly admit something was wrong with our child and it wasn’t until William was after 2 that we started writing about him publicly on Facebook to share our journey. It wasn’t that we were ashamed, we were frightened, not only thing things William would struggle with but of the stigma that comes with having a learning disability.
  • Who is in your household?
  • Is Dave Williams dad?
    I had to kick Dave to make sure he didn’t pull his usual not funny trick of saying ‘as far as I’m aware’ or ‘Yes or the milkman’s’ Honestly these jokes are almost as old as the one were he says he’s shagging my sister ๐Ÿ™„
  • Do you both work? Who’s the main breadwinner? What does he do for a living?
    Insert idle chit chat here about how the current pandemic is effecting him at work.
  • Has there been any history of trauma or domestic violence that may have impacted William?
    I had just kick Dave but that doesn’t count… No of course not ๐Ÿ˜‡
  • Is there a history of autism in our family?
  • Is there a history of mental health issues?
    I explained about my lengthy battle with postnatal depression and anxiety and the medication I had been on and for how long. I’m not ashamed of it, in fact i’m proud. Although it took me a long time to seek help, I eventually did and came out the other side. Some people don’t.
  • What other agencies are involved with William?
    We then discussed things his paediatrician had put forward; blood testing and genetics testing and our next appointment.
    We discussed Lisa who liaises with the nursery in regards to his education.
  • Are social services involved?
    Eh? No!
  • What was my pregnancy like?
    We discussed how high risk it was, the lengthy induction, having an assisted labour, gestational diabetes, being in hospital longer than expected.
  • Is William on any medication?
  • Did you bond with William?
    Yes. No. Maybe? He didn’t really bond with me? He’s indifferent.
  • What was he like in meeting his milestones?
    Insert big head joke here and not sitting up until 10 months.
  • What were his first words? ๐Ÿค
  • What does him playing look like?
  • Does he make eye contact? If he does can he maintain it or is it fleeting?
  • Does he respond to his own name?
  • Does he indicate his emotions or pain with facial expressions? Let me tell you something… Justin Bonomo and Erik Seidel are amateurs compared to William when it comes to having a good poker face. I’ve let me nerd slip out again there. Justin and Erik are two of the most famous poker players in the world.
  • How does he behave with other kids at nursery?
  • Are there any children outside of nursery that he engages with?
  • What kind of support does he receive at nursery?
  • Am I OK to contact the nursery?
  • Does William recognise other peoples emotions?
  • What are Williams meltdowns like?
    Like a tornado ripping through my living room.
    Like stepping into the ring with Conor Mcgregor.
    Like trying to hold onto an oiled up contortionist.
  • What sensory issues does William suffer with?
  • What are the main indicators he is about to have a meltdown?
  • What are his eating habits like other than during meltdowns?
  • Does he show any signs of anxiety?
  • What is his sleep pattern like?
  • Are there any things he cant do in regards to his motor skills?
    Jump. Hop. Point. Wave. Clap.
  • What is he like with danger? or strangers?
    No sense of danger or recognition between familiar adults and strangers.
    That was it!
    Interrogation over.

She was happy that William had been referred to the right place and he will remain on the waiting list ๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰
Relief swept over me. Tears ran down my face.

What happens next?

A letter confirming this will be sent to all parties involved.
A team of specialised autism nurses will be on hand during our wait to answer any questions we may have.

The wait is currently between 2 and 2 and a half years. We will not be contacted until William is at the top of the list.
To put things into number which you know I enjoy, there are over 900 people in front of him in Hull alone. In order to them to bring their waiting time down they must assess a minimum of 8 people per week and I know a company called Healios have stepped in to alleviate some of the pressure but they can’t carry out all the assessments as they conduct theirs via video link and not all of those waiting would benefit from such an assessment.
The actual assessment is called ADOS (Autism Diagnostic Observation Schedule) and it is currently the standardised diagnostic tool for diagnosing ASD.
The ADOS process involves observations under controlled circumstances that other professionals are able to replicate.
Only trained professionals can administer the ADOS diagnostic screening, but it eliminates some of the differences of opinion otherwise possible when two different experts provide a diagnosis without following the same consensus in regards to what they should be looking for. Using the one set of clear guideline minimises the margin for misdiagnosis and errors.

When it is Williams turn for his assessment he will already be finishing his first term of his second year at school ๐Ÿ“š That is if they continue seeing people at their current rate.


November/December 2022 – What a brilliant Christmas gift that will be for us that year ๐ŸŽ„๐ŸŽ

Posted in autism and covid19, Autism In The News

EHCP Announcement

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 ๐ŸŒช

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. ๐Ÿคฃ

Our PCP meeting is still due to take place over email or Skype or in some other technological way ๐Ÿ‘ฉโ€๐Ÿ’ป 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.

That smile though…
Makes our recent sleepless nights worth every second!

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 ๐Ÿฒ honestly he’s like a little zombie trying to get brains ๐ŸงŸโ€โ™‚๏ธ

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 ๐Ÿ• 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. ๐Ÿ– 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. ๐Ÿ”ช๐Ÿšฟ

The a$$hole club
Bonding on the few days they have something in common

Posted in Appointments, Dads Journey

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

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.