As a parent of a child with special needs I often feel judged, judged by those who are in positions to support us or judged by those who don’t understand. It shouldn’t matter, but it does. Peoples opinions still effect all of us whether we are willing to admit it or not.
I dread people coming to my house, not just because of the Covid situation but because it makes me uncomfortable. We recently had an appointment with ‘the sleep team’ and a woman called Rachel came to our house. I’m immediately on edge because she is coming in my house, what if she sits there judging us? Don’t get me wrong, my house isn’t unclean but it is most definitely lived in and you are bound to step/sit on some abandoned snack or cockle over on half an egg shaped toy but its home, its where we make memories and I personally wouldn’t want it any other way.
She comes in wearing her full PPE gear and sits on the floor. Who does that in a house with both a cat and a dog? Even I don’t sit on the floor… it looks clean and gets hoovered all the time, but you always end up with a nice coating of ginger fur anyway.
I’m not sure if I have mellowed as time has gone by but I really liked this woman who is now in a list of recent professionals who have managed to put me at ease in a very short space of time. Maybe I’m just not as neurotic as I once was.
I have done so much research about sleep regression, sleep avoidance, ways to assist in sleep, the works to be honest, it started maybe a year ago when William decided he no longer wanted to seep like a log. A little context is maybe needed here… William has always slept through the night, right from the moment we brought him home from the hospital. We used to give him a little poke to make sure he was ok because he was so still. Oh, how I used to brag about the fact he was an amazing sleeper! This is my payment for being a smug bitch.
Rachel spoke to us about Williams routines, his behaviours at bedtime and through the night and asked us about steps we have put in place to try and ensure he gets some sleep.
William struggles to get to sleep, he struggles to stay asleep and seems to only need between four and five hours a night
There is a huge list of things we have tried and failed. Hours of research and expensive bits and pieces to help him settle but to no avail.
What really made my day is that Rachel said we were doing everything right ☺ us… who feel so inadequate at times doing it right. She said we had a good team between the two of and seem to communicate well and work together… I almost fell over, but it did really make my day.
The only downside to this is that she couldn’t offer any further advice however she is going to speak to the KIDS charity and see if they can offer anything further. This to me indicates that medication will be the next step and I don’t think I want that for my child, but we will have to cross that bridge when we get to it.
She is coming back on the 8th so I will keep you updated with any developments
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 🎂
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 🦨🤣
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 😕 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. 🚗 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 🙄
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.
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.
The purpose of literature is to turn blood into ink.
I am well aware that the above Eliot quote is not actually a direct quote but it fit nicely with my reason for today’s post. William’s dreaded blood tests.
Back in January we went to see that delightful paediatrician that told Dave off for fidgeting and spoke down to us, not that it bothered me or anything 😡 She told us that she would refer William for some blood tests; two samples needed… * One to check for anything in his blood that indicates something may be medically wrong with him which means autism is a symptom and not the cause. * And the other to send for genetics testing; this will confirm our rule out genetic conditions that have or can be passed down.
Jan 22nd – Paediatrician
March 24th – Lockdown
May 18th – Paediatrician
May 26th – Blood test
June 8th – Blood test
The Paediatrician told us it would be a few weeks until we received a letter so when we were at at TAF meeting at the beginning of February and Sarah told us it wasn’t on his record yet but that wasn’t uncommon we weren’t worried. BUT THEN… LOCKDOWN HAPPENED! 🔒 Things were still happening and a telephone appointment came through for a different paediatrician 🙌 it didn’t explain what would be discussed so understandably we were nervous. I’m not sure who called but it wasn’t the first paediatrician or the one mentioned on the letter. It was a gentleman who sounded like robocop with and a strong accent and poor phone signal.
He had called to discuss Williams blood test results 🔮 you know the ones he hadn’t had yet!!
⏩⏩⏩ fast forward a few days and I get a call to say we can attend a blood test at Kingswood that afternoon, it wasn’t possible as we don’t drive and it was already 11am and by the time we had gotten 2 buses (baring in mind I haven’t gone out in public for over 60 days) we would have missed the clinic. The next one was 26th May at his paediatrician office so we went for it. Only one person could attend and it was too short notice to post a letter out to us so it was sent in a text form instead. 📱 this contained a link to a letter about what happens at these appointments, let me go through it and tell you how useful this was to a child like William.
At the appointment we will talk to your child to explain what will happen and what we need them to do during the procedure. You may wish to bring a favourite toy/book as a distraction. This is brilliant! Three years of not been able to communicate the most simple of things like ‘Don’t bite me’, ‘Get down’ or ‘That’s Naughty’ but suddenly they are telling me that they will explain how and why they are about to restrain him and jab at him with a needle. People often ask me when we go out why I haven’t brought any toys for William. There is only one answer… William doesn’t play like other children. He isn’t interested in conventional toys and often retreats into himself in lieu of ‘playing’
Depending on their age and size,your child will be asked if they would prefer to sit on their parents/guardians knee. This not only gives comfort and reassurance to your child, but also helps as you are able to hold your child still for the test. Again you can ask William what he wants but he wont acknowledge you, If he isn’t sat on Dave’s knee then he would have wandered off from the room and this wouldn’t give William comfort as he only wants to be held on his terms. Imagine trying to restrain a pissed off octopus 🐙
We have a local anaesthetic spray that we can apply to the skin prior to blood being taken at the appointment. The spray is very cold and will help numb the area.
Please inform staff if your child is diabetic or is being investigated for diabetes as this may affect use of this spray
If you do not feel that the cold spray is appropriate for your child you may prefer to use a topical numbing cream. As it takes some time to work this will need to be applied before coming to the appointment. You would need to contact your GP for a prescription for this. Talk to your pharmacist about how to use the product correctly before your appointment
If requesting or purchasing the topical cream please take a copy of the appointment letter ad this consent form into your GP surgery or pharmacy. So these four bullet points all relate to a numbing spray or cream. Should I have needed the topical cream for William then it would have been near on impossible to obtain. Called on a Friday, this link and text not received until late Friday afternoon. Bank holiday Monday. How would we have gotten into doctors? Let alone take our nonexistent letter in to them. No even going to address a consent form since it wasn’t mentioned nor sent.
Dave does all the bad appointments; you know the kind like injections or ones with people who just put your kid on edge and now blood tests, it’s not because I don’t want to take him but because he knows I would fall apart and be useless.
The first thing they asked David for when he arrived was Williams urine sample. You know the one they didn’t ask for. The one that isn’t mentioned in the text we received nor in the bullet points above. 😕 The gave Dave a vial to obtain a sample… a sample from a child who relies 100% on nappies, what is he going to go follow him around and wait for him to start weeing everywhere? They are now sending us a pack out in the post to use in his nappy. I think its just a sanitary pad kind of thing as that is what they gave us when he had been admitted to hospital.
The freeze spray was good as it made William giggle like when we put sun cream on him. Whether it numbed the area adequately is a different question to one in which we don’t have the answer for but I hope so.
💉Ever heard of a technique called dripping? I hadn’t so when Dave came home and explained that they hadn’t been able to use a needle so they let blood drip down his hand into a vial. He explained his hand was covered in blood… I’m not going to lie I freaked out! Surely this wasn’t an appropriate way to take blood? So i went straight to the internet and I couldn’t find a single thing about it on google. I read 225 pages of the WHO guidelines; best practices in phlebotomy and there was nothing in there either.
Luckily I am a member of a group on Facebook full of parents in my local area who’s children have SEN. Several of them immediately jumped onto my post to my mind at ease. It is actually a well used method called the ‘Gravity Method’ which is basically where they stab the vein with a needle and let gravity do its thing so that blood drips into the vial until they have a adequately sized sample.
Unfortunately they only managed to fill one vial which is marked for his genetics testing and will be sent to Leeds. This means that poor William has to go through this again in a few weeks time.💉 Thankfully they are doing a home visit next time so hopefully in his familiar surroundings he will be more calm and distractable 🤞 I will just need to make sure I have baked another treat for William once its over since despite the ‘trauma’ it didn’t stop him eating two large pieces of sponge cake.
So now the only thing we can do until the next blood test is to wait for the results of this one vial. Genetics testing recently has been taking less than 12 weeks for results however some parents have waited an extraordinary amount of time so it’s just something else we have to wait for, another count down.
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 ❓❓❓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 😳 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! 😔🔫 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 🙄
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 😇
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? 🤐
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 hisemotions 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 🎉🎉🎉 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 📚 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 🎄🎁
Dave here 👋🏻 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… 🤞🏻
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 nowbut 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 😢 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 🤥 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 🤞🏻
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 🐕
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 🤫
Today was THE DAY!!! well almost… William’s referral to the ASD panel will be put through by his Speech and Language therapist. We need to sign our consent on the 10th February when she goes to observe him at nursery and then it’s done. Then we wait for the confirmation letter and the countdown begins ⏱
Today, like most important days didn’t start well. Anxiety at peak and the woman from speech and language hasn’t turned up and it was almost 30 minutes passed our home visit time.
Just like my last Tesco order she had gone to our old address 🤣 She called and was super apologetic but her paper file hadn’t been updated but she was on her way. So Sally (writing her name so I remember it in the future) arrived and jumped in straight away, As soon as she sat down William went to her and grabbed her hands to play ’round and round the garden’ which was a positive sign as he doesn’t often take to new people in that way especially when he’s been poorly. Sunday morning wake up call was to a gunky case of conjunctivitis and a bust lip? Not sure how that happened but he didn’t wake us up when it did.
She asked a lot of the same questions as the Neurodevelopmental Paediatrician did but had a warm way about her that made them less judgemental and abrupt. In between questions she was playing with William as he wouldn’t leave her alone.
This wasn’t the type of appointment in which someone walks in and goes ‘right then Mr & Mrs Buckley, William will definitely start talking soon!’ This was the beginning of a very long process. There is no magic wand to wave to poof things into happening or to speed up William’s development and we’re ok with that as long as things are moving in the right direction and that he is happy.
Sally is sending us on a course ran by 2 speech and language specialists who will help up know how to appropriately encourage William to make more eye contact. She mentioned that usually his SEN worker would go along but believes Val has already had it based on the work she has done with William so far however will send her too if needed. There is a few month waiting list for this so it’s another letter we will be waiting to hit the doormat but we are good with that as we know its coming. she will the check back in with us to see what the next steps are in developing his communication whether it’s BSL, Makaton on the Pecs system. The goal isn’t necessary to get William to start speaking but to enable him to communicate with us in a way he is comfortable with with which make things easier for us all in the long run.
Don’t get me wrong I would kill to have William call me ‘Mummy’ or tell me he loves me but he already does that in his own ways. Like on the rare occasion when he’s tired and comes to cuddle me and moves my hand so I know he wants me to stroke his hair.
hours minutes seconds
It’s Officially The Day
William has several appointments and assessments in the pipeline including an evaluation by IPass who are going to assess him movement to rule out any physical disabilities. The next TAF meeting is in February so hopefully this will get the ball rolling further in regards to his education and an EHCP plan.
Big progress with Williams fine motor skills and his hand eye coordination and it’s all happened in such a short time. He has now done the following for the first times…
* slotted a disc into a small hole * used a fork to scoop, stab and feed * built a lego tower with me * scribbled independently on his whiteboard ➡ Future Picasso according to his Nanna
Today was THE day! Everyone said it was… everyone said it was THE appointment to get him on the ASD Panel waiting list. We were referred to the neurodevelopmental paediatrician because she would be the one to put him on that list… I should have known better, why would this be THE day. A miserable cold day in January when none of the previous ‘THE day’ appointments had been the actual day.
Yesterday we had a tiny step for babykind but a massive leap for William👨🏻🚀 He has been using a fork! 🍴 He had actually been scooping and stabbing his own food and successfully getting it in his mouth. This amazing coordination is a huge achievement for him. He hasn’t reenacted this at home yet but he has a small toy that involves putting a disc into a slot and he has also master that. His current favourite game is putting the disc in and passing me it to fire out for him to do it all again… so basically I spend a good portion of my evenings playing fetch with my toddler 😏 His other favourite pastime is holding me hostage in his room and forcing me to play round and round the garden until I can escape but we are currently on game number 1,00000003 and he still laughs before I even touch his hand which means I will keep going.
His bedtime routine hasn’t improved although our morning one has. His Nanna bought him some adorable all in ones to sleep in which means we don’t have to fully disinfect his room every morning. Don’t get me wrong he still tries to take his pants off at every opportunity… he is just like his dad in that way 😜
He isn’t lashing out as much as he has done in the past but his routine is now settled again so i am hoping it stays that way if he encounters changes. He does need his nails cutting soon so if any of you see me with a bloody face then you can probably guess why.
Today didn’t start particularly well, both David and William had to get up much earlier than usual and neither of them handled it well. I basically hand to turn into Gny. Sgt. Hartman to get them sorted and out of the house! I’m not exactly pleasant when i’m stressed.
Traffic was horrendous and we stayed in the same spot on holderness road for 15 minutes and then to cap it off when we get on our second bus we ended up miles away because the shitting ‘movit’ app crashed. THEN google maps told us to go in the wrong direction! Needless to say both me and Dave were very stressed and took it out on each other. He shouted at me, I shouted at him and then we didn’t speak…
Arriving late is never the impression I want to give so I was very on edge when we finally arrived. The paediatrician whose name I can’t remember didn’t come across well, I don’t know if its because I was on edge but she was very condescending and told Dave off for fidgeting because it was distracting her.
She tipped out some toys for William to play with and grilled us about family history and when William reached his milestones. I couldn’t remember when he first smiled and I felt like a terrible mum. I remembered he was 10 months when he first sat up and 21 months when he was walking independently but I could not for the life of me remember when he first smiled. I remember the feeling and the fact I cried when he first looked at me and smiled but not when. She asked about our family histories and if any one had any history of ASD and there is one person in each side of the family. Both boys and both in Williams generation. Both on our Fathers sides.
How is his medical history, how many times has he been in hospital? How many times has he had antibiotics? What caused his massive allergic reaction? what are his bowel movements like? apparently sluggish bowels are often found in children with autism. Does he have any birthmarks? What was he like as a baby? Was I on medication when pregnant? Other than GD did I have any issues? Did I breastfeed? How was the labour? Well it was fucking hard! it was definitely no walk in the park.
Then she asked about his sleep patterns and we explained how well he slept really well until he turned two. How is his diet? well… when we can get him to eat he will eat anything and everything, even stuff he wont touch with his hands will go into his mouth. His poops often come out gift wrapped due to the amount of paper he eats. Its not worth risking a finger to get it out of his mouth. 👆🏻
Where do I work? What do I do? Where does Dave work? what does his job entail? How many hours do we work? Who lives in our house? How does William interact with the pets? How is his recognition with people? This one is always a touchy subject as he doesn’t really behave differently towards anyone. I explained we could have walked out that room and left him with her and he wouldn’t be any different. On occasion he will show immediate delight when he sees his Big Nanna or my dad but that is it. She explained how it is fairly common for children with autism to fail to bond with people and parents will often struggle due to their feelings not been returned… well this really hit home and I started crying. I love William with every ounce of my being but it is disheartening actually more like devastating when he doesn’t care for me in the same way. If I am holding him when he is upset he will reach for hs dad and when his dad is holding him and i got to kiss him he will pull away from away. How will he know I love him if he rarely lets me show it. When we are alone and i’m the only option he will come and snuggle with me but that isn’t because I am his Mum, it’s because I am there.
She listened to his heartbeat and all was fine, took his weight and height and she also flexed his joints, checked out his hands, feet and his birthmark. Is his skin dry? No… I had forgotten about his chicken skin. I always forget about it because to me it is normal as I had it. Basically chicken skin is a condition called Keratosis Pilaris, it’s basically a build up of keratin in the hair follicles that causes small bumps on the skin. It is hereditary as a few of the women in my family have had it so to us it’s just the norm.
She asked us to strip him off and get him to walk the length of the corridor outside. He did it gingerly, the same way he walks anywhere. She asked us to try and get him to run but he doesn’t run. He never has… we tried to make it a game but he didn’t run just waddled a bit faster. A bit like my version of running 😂 She did speak with us about his walking abilities and how hard things will get when he no longer fits in a stroller and where to look for help. Obviously this wasn’t what we wanted to hear as we hadn’t even thought about the fact he may not get better with his walking so it was a bit of a blow.
She agreed he has a severe developmental delay and the 9-11 months bracket he was put in before was correct. That is 2 whole years behind where he should be. He will be 3 in March which seems crazy as I feel like it was only yesterday we brought him home from the hospital. Although she also agrees that he has severe autism she will not be the one to put him on the ASD waiting list. She wants the speech and language therapist to it. What the actual fuck!!! So let’s just recap who we now know wont, haven’t or cant do it… * Ourselves * The Nursery * His Key Worker * His GP * His Health Visitor * The woman from the Early Years Team * The Paediatrician from A&E * The Community Nursing Team * The Neurodevelopmental Paediatrician They all agree that it is highly likely he is on the spectrum but nothing has actually been done with that knowledge. If the S&L therapist doesn’t do it then I do know who will and just in case anyone spotted me crying hysterically in the middle of anlaby road this is why. The waiting list according to other parents waiting time for first contact is currently 867 days. That is 2 years, 4 months and 15 days. 28 and a half months. 124 weeks. 20,808 hours. 1,248,480 minutes or 74,908,800 seconds. I can’t imagine this wait getting any smaller and the longer it takes to get us on it, the longer it takes to guarantee William the support he needs.
Once again one referral has lead to another and she wants to refer William for blood tests to rule out any underlying issue as autism can often be the symptom of something much bigger. She is also requesting genetic testing. A genetic test can not diagnose autism or detect it early but there are 100 genes that have clear links to autism but no one mutated gene can cause it. For example there is a clear link between children missing the chromosome called 16p11.2 and autism however one 1 in 4 of those missing this have autism. This test can give us a reason as to why him? and I know it’s selfish but I think as parents we need to know its not our fault and that we haven’t caused it somehow.
So no answers were given today and today was not THE day we get on the waiting list. We are back in three months and hopefully will feel like more parts of our journey have been completed.
On a separate note we received a message from the nursery today about an exciting new room they are creating. A sensory room! Children with needs like William’s will be able to spend their time in a special environment tailored to them. William’s Key worker Val will be based in there permanently and as William needs 100% support so will he. I am so pleased with this development. They are a fantastic nursery and i’m very lucky we chose them to care for William.
I started writing this at 7pm and it is currently 1:15 in the morning. William has been throwing up since about 8pm. Terrified me the first time as I thought he was choking on it. He only ever been sick like this once before and it was over a year go. Currently I have a pile of sick covered clothes, cushions and blankets (both mine and his) that need to go in the wash, his pram and travel cot (I didn’t want him in his room alone if he was sick again) sat drying next to the radiator and William asleep on the sofa behind me with a temperature and a towel… Just in case.
So I’m going to apologise in advance because this is going to be a bit of a rant.
We are currently waiting on so many referrals and appointments that we are at a stage where we have nothing but seem to have it all… I know that’s contradictory. We have no appointments and no diagnosis but we had plans set in place to work our way forwards and it felt really good to be in that position.
I was really positive about it all but I guess I was just delusional. The glass isn’t half full like I initially thought it was. What makes it worse is whilst I felt this way I could throw my efforts into supporting Dave as he comes to terms with the fact William isn’t developing at a normal rate. He was very open and honest in his post (which knowing him was probably his first and last) but that doesn’t mean he isn’t still struggling to adjust just our situation.
WHY? WHY GOD WHY? Do we get post on a fucking Saturday?!
So in drops a letter. Private and Confidential, Mr William Graham Buckley… for a fleeting moment I was excited. What an idiot eh? I opened that envelope quicker than birthday cards with money in them. I didn’t understand. It was regarding a referral but I had no idea what it was for as it didn’t say and nothing about it rang a bell in regards to our last TAF meeting. I wasn’t expecting it and as it was a Saturday, there was no one I could call to find out. I did what any sane and rational parent does. I turned to google, I asked Alexa ‘referral to CHCP, Hull Children’s Community nursing team.’ Nothing. I asked on the SEN Parents group I recently joined on Facebook. Only one person commented and it wasn’t with the answer. Spoke to my mum and sister, couldn’t help but seemed like a step in the right direction. The letter said to wait until today and if I hadn’t heard anything call them… Just to put it into numbers. The letter was dated 27th November, we received it 7th December and today is the 11th December. So I was a good girl and waited those 4 days which seemed like a lifetime.
I made the ridiculous decision to call whilst at work. I always do this and I should have known better.
Smear test results – bad news – called at work
Biopsy results – bad news – called at work
Job interview – bad news – called at work
Glucose tolerance test – bad news – called at work
I should just stop taking my mobile to work!
Call One. I called the number on the letter and a lovely lady called Jess answered. what was the referral regarding? I don’t know maybe his suspected autism. What does the letter say? To call you if I hadn’t heard anything. I’m sorry Mrs Buckley he isn’t on our system but the department you need used to be based here and I think that’s why you have our number. She gave me the number for the paediatric team who I should be dealing with. Just a simple mistake.
Call Two. I called the new number, it took ages for anyone to answer. My anxiety levels rising rapidly. I just wanted to know what referral I was waiting for. What next step we have for William. A lady answers that didn’t give me her name and I’m almost certain is in the wrong job! The attitude on it was appalling. Why are you calling. Referral. Was given your number by blah blah blah, what’s it regarding. Honestly felt like I was in groundhog day ⏲. She had no idea what the hell I was talking about. He’s not on our system. The letter means the doctors are putting a referral through but it says they’ve sent it? No its sayinging they are doing it… I was the looking at it but ok then. Call your GP.
Call Three. Call taker at City Health Practise answers, no proper access to their systems but pleasant enough. Very understanding of how upset I was and apologetic. Doesn’t know what I’m talking about but will send a message to the receptionist and put a red flag on it for a call back. GREAT! More waiting…
Call Four. This one wasn’t even to me. One of the 2 places I had called first had called Dave, not sure which one. The referral was wrong. Sent to the wrong place! I’m not sure why I was so shook by it but I’m not ashamed to say that I actually started crying whilst in view of other people.
Dave was due at or GP in the afternoon for William’s flu vaccination so he was going to speak to them face to face and find out what was going on.
I went back into work and took shelter in the toilets and sobbed. It was loud, messy and snotty but I couldn’t stop. It just gushed out of me for a good 20 minutes and I let it because this was another setback and the third time we have tried to get somewhere in regards to referrals. AND its not the first that has been done wrong,
1. Eye test ➡ Told to go to opticians ➡ then to gp ➡ then to eye clinic but it was actually sent to ➡ The Children’s Urology Surgery Team in error ➡ had to go back to the GP and start again.
2. Paediatrician says they are referring William to ➡ ASD Panel, check with GP and they’ve received it and it’s all in hand. Health visitor checks with GP and no referral done by Paediatrician as they wanted GP to do it who isn’t able. GP didn’t even notify us.
3. This one
And to top it all off William’s flu vaccination was for last Monday at our GP surgery but they had booked us in at their sister site and not told us!!!
Dave spoke with the GP receptionist who assured him it was booked with the right people. He told them that it wasn’t and we had spoken to them but no it was right apparently… he had to demand they call to confirm which she didn’t want to do because the referral was right. BUT it wasn’t! After after much frustration he convinced her to call and guess what it was done to the wrong place but apparently that’s ok as its an easy mistake to make as they are in the same building etc etc!
Waiting for new referral now… To Sunshine House. Which FYI isn’t in the same place as the place we had received the letter for.
I feel my confidence in this system is slowly weakening. No wonder referrals for anything take so long. The wait for the ASD panel is between 2-3 years once confirmed and we aren’t even on that list yet. All these mistakes are setting us further and further back! William will already be at school by the time he gets a diagnosis… Will he get the support that he needs without it? Can I trust what is been told to me?