I think I have been pretty vocal about how all appointments and referral seem to go round for us but I held out hope (in vain) for our most recent one, to the nappy service 🚼
Let me put a little context to this. William is 3 years old but developmentally under a year. Due to his physical age he is the highest available size of nappies. He is not currently able to be potty trained as he isn’t aware of when he needs to go toilet or if he is he is unable to communicate this as of yet.
William also suffers from a lazy bowel and it doesn’t always function and it should so mild laxatives are often needed to relieve him of discomfort as he can go over a week before naturally being able to pass a stool. As you can imagine the build up of waiting to go natural or the explosion of laxatives puts any nappy to the test but imagine this happening when there isn’t any that will fit him 🤢
William also displays sensory seeking behaviors and unfortunately this involves a fascination with his own faeces. The will result in him smearing the contents of his nappy over himself and his surroundings and on occasion he has put it in his mouth.
On a night we have had to put him in a onesie to stop him taking his clothes off and removing his nappy. Unfortunately for us the little Houdini has now learnt to remove a onesie as you can see below… thankfully he was busted in time and put back into his clothing jail.
We were worried as he gets bigger what will do and we were told that there is a nappy service in our area which provides children with special needs nappies in bigger sizes which is amazing. However nothing is ever that simple.
Let me start from the beginning…
Our GP sent a referral to the community nursing team
The community nursing team rejected this as he is under 4
NO ONE NOTIFIED US UNTIL WE CHASED THE REFERRAL
Our GP sent a referral to paediatric medicine
The sent it back to the GP with advice to refer to community nurses or the learning disability team
NO ONE NOTIFIED US AND OUR GP CLOSED THE REFERRAL
I chase the paediatric medicine team who told us what they had done
I call the GP and they tell me to call the community nursing team
I call them and they only know about the original referral and won’t accept another one as he is still under 4
I call the GP and have to tell them exactly what the paediatric medicine team have told me
SUDDENLY NOW I HAVE TOLD THEM WHAT HAS BEEN SAID THEY CAN SEE IT ON THEIR SYSTEM
They can not help as the person who deals with referral is off (I don’t think they’ve ever been in the office when I have called) but a manager of the surgery will call me back
Kerry calls me and has no idea why she is calling me. She thinks it’s regarding his autism assessment.
I HAVE TO REPEAT THE FULL CYCLE AGAIN WHILST SHE REPEATEDLY TELLS ME SHE DOESN’T KNOW WHATS HAPPENED
She is going to call our health visitor and William’s own paediatrician for help and call me back
She calls back, she has left word for the health visitor but doesn’t know if she can help. She has called CAMHS (children and adult mental health services) and they can not help. She has called learning disabilities team and they can not help and she doesn’t know what to do.
WELL KAREN (SHE IS NOW A KAREN, I HAVE DECIDED) NEITHER DO I AND IT’S NOT MY JOB TO KNOW!
She will send me some links to places that can help.
DO YOU KNOW WHAT SHE SENT ME… A LINK TO A CHARITY SHOP AND A SITE TO SUPPORT ADULTS WITH AUTISM. SO FUCKING HELPFUL!
I found it hard not to cry or be angry whilst on the phone with Kerry/Karen and I’m sure she could hear the break in my voice when I asked her ‘what are we supposed to do now?’
And that is the question, what do we do now?
We can’t be the first parents who have come across this, we can’t be the first to be in this situation. What happens when you fall into the gap? Do we just stay there for 8 months and have a bare bottomed child or tie a carrier bag to his waist?
If I failed to change and clean his bum for him when he was physically under a year old then I would have been classed as neglectful but what about now? He isnt physically under year but developmentally he is still in the same place. Am I being neglectful? Or are the services in place being neglectful by allowing this?
Autism. How to raise a happy autistic child. By Jessie Hewitson
OK so I want to start by saying the cover and title of this book really put me off. It felt a little too ‘self helpy’ for my liking and although I needed guidance I want quite ready for the self help section of amazon if you know what I mean. The book itself was recommended on multiple sites and Facebook pages for parents ‘finding their feet’ in the turbulent waters of ASD. It wasn’t until Debs told me to read it did I buy it… well almost. I put it in my Amazon basket and decided I was ready a few months later.
My review may come across a little scatty but I am writing it as I read and I have a nasty habit of putting books down and forgetting they exist. (9 months I tried to Big Little Lies and still never finished it.) Don’t get me wrong I love reading but I have to really be enthralled by the characters or story line for it keep me interested. Now Harry potter is a book I can read over and over again. In fact I had read all 7 books to William before he turned one. We even read Cursed Child but we try not to discuss that monstrosity in this house.
I want to kick my review off with a quote from one of the first pages in her book.
I should have read this book a year ago and I’m not the only one. I couldn’t put the book down for the first few chapters which is always a great sign. Have any of you heard of Donald Triplett? Well neither had I!
This is Donald Triplett. He was the first ever person to be officially diagnosed with autism. Case number 1. Numero uno. Patient zero. His parents were told to put him in an institution… and they did!!! Can you imagine giving up on your child like that? I can only imagine what was going on in their head. Thankfully after a year they went back to collect him. He was their child not a puppy you can return to the pound.
Donald is now 87 years old. He has had a successful career as a bank teller, drives his own car and enjoys travelling the world. Donald is an inspiration to anyone with autism and hope from any parent of a child with autism who thinks its no longer possible for their child to live a ‘normal’ life. My advice to those parents and believe me its something I have to remind myself is to think of Donald. When things get exceptionally tough and my head goes to all those dark thoughts about things William might never do. I need to remind myself to think of Donald.
If you have read our post about the poem entitled Welcome to Holland you will understand why this next exert really resonates with me. If you haven’t read it then click the clink 😊
The book has introduced me to the term ‘Refrigerator Mother’ in 1949 Leo Kanner (who diagnosed Donald) suggested that autism was a response to a lack of maternal warmth, in fact he went as far to condemn parents of autistic children. Bruno Bettleheim took this theory and ran with it resulting in the ‘Refrigerator Mother’ theory becoming the mainstream consensus as a reason for autism.
Thank God this was way before my time because I feel irrationally guilty now but imagine if someone had told me it was all my fault because I didn’t love my child enough. It would be devastating. My heart breaks for all the mother back then who already struggled to bond with their babies.
It wasn’t until the 70s when 2 British doctors; Lorna Wing and Judith Gould developed a better understanding of autism. Lorna who had a daughter with autism knew firsthand that the ‘Refrigerator Mother’ theory was absolute bullshit and set out to prove both Kanner and Bettleheim wrong. She concluded that autism was in fact a spectrum meaning it was most definitely not as rare as her predecessors had claimed.
The two men had started the job of establishing what autism is but like any job, the men (or at least Dave anyways) never finished it and the women got fed up of waiting so finished it themselves. Before you jump on me… there was a hole in my bedroom wall for two years that I eventually fixed 🤣
Jessie talks in depth about building a team. This team helps both parents and child and can include professionals, friends or family members and its made me think of our team and how its members came to us in the most surprising ways.
First on our team is my amazing mother (honestly look at her, how beautiful is she?!) and our best friend Debs. Both from day one slowly dripped into our ears that something wasn’t quite right, William wasn’t meeting his milestones and originally they could be laughed off with a joke ‘Oh he’s just lazy like his dad’ I’m not going to lie either they weren’t always met with nice responses and I remember yelling at my mom through tears ‘don’t you think I know!’ and I cringe thinking of that conversation now because even though I was angry it was probably the first time I admitted out loud something was wrong.
Ian, I’m not going to lie I have known him for probably over a decade but we had never been ‘friends’ until maybe about 2 years ago. He was kind enough to drive me home from work when I got stuck for a bus. It took a few journeys before broaching the subject of his little boy and asking not so subtle questions… ‘When did you first know?’ Well its safe to say he saw straight through me and soon our chats about our children’s development became a regular occurrence and were something I looked forward to as I could speak openly without being judged. Fast forward to present day and Ian has done so much for us whether it is letting us know what certain acronyms mean, what processes need to be followed or what help we can get and from where. Only the other day he spent 45 mins on the phone with me helping me fill out a form and recommending drinking cups that William wont chew through 😬 I can safely say that I am ashamed it took me so long to get to know Ian as in his own words he is skilled at being a good person and a fucking arsehole at the same time!
My sister H who listened to me bitch and moan when the comments about Williams development stopped being subtle. Who has answered the phone and celebrated with me every time I have cried and laughed because William looked at me or touched bread or did something that other parents see every day.
Emma, Tish & Danielle who are always on hand to listen to me rant and are Willing to spend their free time doing William friendly activities that don’t necessarily keep their own children entertained.
These are but a few people but there are so many more. Everyone that asks after William, thinks of him and those that read our blog are all supporting us and we are so grateful for each and everyone of you. I don’t think we could be so open about our journey with out you all.
The professionals involved are equally amazing, Laura, Linda and Val are his amazing support team at nursery. We have recently been contacted by our local school nursery as we had put his name down for a place before we have even moved house. It’s that close I could literally throw William like rugby ball from the front door and he would be there. We have decided we no longer want a place for him, not just because he wont be going to the school but the ladies at his current nursery have been amazing and William has bonded with each of them. Why mess with perfection? Lisa from the council who attends ever meeting and has called to check in with us during this pandemic to make sure the three of us were doing OK. Not to mention responding to my slightly panicked emails about the recent EHCP announcement. Sarah, a real life wonder woman! Our health visitor is truly amazing. I really hope her other families appreciate her as much as we do. We couldn’t have done half and a quarter of what we have without her. We moved house and even though we are outside her ‘jurisdiction’ she has stayed with us and continues to turn up to all of Williams meetings despite being over worked.
Jessie explains that it will take a very long time to fully establish your team both personal and professional. I know as William gets older his professional help will change to match his needs and our personal one may differ as people flit in and out of our lives and we are trying to prepare for it as daunting as it may be. William isn’t the only one in our family who doesn’t adapt well to change 😳
Children from BAME communities are less likely to be diagnosed with autism than white children. There are massive racial disparities when it comes to obtaining an ASD diagnosis. Hispanic children are 65% less likely and black children 19% less likely to receive an autism diagnosis than a white child. Jessie explains in her book that she found pretty much nothing in relation to autism within the BAME communities. Not because it is less prevalent within their race but because there are certain barriers. Some languages do not have a word or phrase for Autism and a Somali parent is quoted stating her family and friend refer to their daughter as ‘Crazy Girl’ (If you read our post about vaccines you will recall Andrew Wakefield preying on a Somali community which resulted in an out break of measles.) It is not uncommon that families will not have access to an interpreter for their meetings meaning and that they will be forced to rely on relatives, friends or often children to interpret meetings they do not necessarily understand. Vanessa Bobb states there is a real fear that within her community that this is just another label for black boys. The misdiagnosis of African-American children is FIVE TIMES higher than that of any other race! Five times? Is there that much of a difference between white children and black children? I don’t think so!
Jessie explains that she uses list to organise her life and her sons. I love Jessie for this! I also love lists! I have lists about lists, lists about when William has had a bowel movement, lists about when he has slept through the night, honestly I fucking love lists! They not only help me with William but they also help me function in day to day life.
Parents often lose hope and according to Dr Stella Acquarone it is her job as a professional to tell parents that it is going to be a good life for both them and their child.
It was only today that I filled out our ‘Parents View’ form for our PCP meeting which is to support our EHCP application. The final section asks ‘What are your hopes and aspirations for your child’s future?’ and our only answer was for him to be happy. We don’t want him to be rich or famous. Just happy. Isn’t that what we all want for our children? Why should it be different if our children are autistic?
Jessie explains that she started writing Chapter 8 –learning to play by discussing the best ways to teach your child to play with you but eventually scrapped that idea because in her words.
She spoke about putting on a show, this is something all parents do but for parents of autistic children it is exceptionally hard. By doing this you are focusing your energy on yourself and not in spending time with your child. I am guilty of this. I have tried to put on a show. Look at my normal little family doing this, look at this… its all fake. She describes waiting for her son to start behaving normally. Something we still find ourselves doing. By waiting for something to happen you can potentially miss what is actually happening around you.
The book fully listed pro’s and cons of different types of schooling. A must read section for anyone with a child starting their school applications soon. I do wish there were clear instructions in regards to what to do with schooling but I know that’s not possible. What works for one child wouldn’t necessarily work for another. I just worry that we will make the wrong decisions but I suppose every parent has that worry whether their child is autistic or not. We believe based on Williams need that a special school would be the best fit for him and the pro’s and con’s have solidified that for us. There is even a handy list of questions to ask when viewing a special school which I will most definitely transfer to my trusty notebook when the time is right to visit.
Mind Blowing Facts about Funding! Mainstream schools receive £6,000 per year for per pupil with SEN. 💰 Special schools receive £10,000 per pupil per year. 💰 If the schools feel this funding isn’t adequate they can appeal for more.
I have already read many horror stories about local authorities and how little support the give families with children with SEN. Jessie states that when she is in her exercise class and partakes in boxing that she she doesn’t picture a person to punch but in fact pictures her local authority. I want to share her story of obtaining an EHCP document, I have shortened it a little as I have used that many exerts in this review that I may as well have just scanned each and every page for you.
The journey starts and the document states black is white.
But black obviously isn’t white so you call them to correct it but no one ever answers.
You resort to email and wait for a reply. Finally when it arrives it states that black is definitely white.
You have to reply and explain the law states black is actually black.
They never reply and you have to hound them.
When they finally respond they tell you its going to their SEN panel for discussion This can take up yo a month and yet you still have to hound them for an answer.
The panel agrees that black is white
You are forced to go to a tribunal in which the council drag out the process with £1000’s of tax payer money. Money that could be better spent elsewhere.
It is finally settled by a 2 person panel who advise black is black.It was always black.
White was never black. But it was in fact a cheaper colour than black and the local authority hoped you would give up.
This isn’t the end. renegotiation’s of what colour black is must take place at least once a year.
We are just dipping our toes into the murky waters of the EHCP process and we really need black to be black but we are prepared to fight if we need to. According to Jessie the EHCP process should take 6 weeks but only 58% of local authorities can stick to this time frame. We have been told it can take up to 10 weeks so I am presuming that it has been a long time since Hull has been in the 58% Some local authorities decline all EHCP requests upon first application in a disgusting way to manage their workload hoping the parents wont try again.
The devil is in the (lack of) detail EHCPs can be vague leaving them open to interpretation meaning it can sound like they are going to provide all the support your child needs but the way in which it is worded can mean they will only get a fraction of this support. They need to be exceptional detailed with time frames and what if’s.
I think this book is a must read to any parent who has or suspects they have an autistic child. Its a really well written manual of what is to be expected and prepares you for the pitfalls of ‘support’ you will receive from the authorities. Some of the sections weren’t relevant to William due to his specific difficulties but as autism a spectrum this book would have been a hell of a lot bigger than its 284 pages should she have researched and included every possible scenario for an autistic child. The book is absolutely brilliant and touched on or delved into so many subjects that I now feel a little more confident having read it and confidence is something a parent of an autistic child often lacks. I feel over the coming years this book will be highlighted, dogeared and full of scribbles as I feel we will be pulling it out before each new leg of our journey. Thank you Jessie! 👏
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 🤫
Tuesday 19th November 2019… We were going into today’s meeting much more prepared than its predecessor. We went armed with my trusty notebook full of comments, questions and observations.
‘TAF’ meetings – Team around family meetings. They basically do as they say on the tin. Its a meeting in which the agencies involved in Williams development get together with his family to make sure we are all on the same page in order to help William as he gets older and to make sure we are all doing what is best for him.
Today’s guest appearances came from a member of the Early Years Development Team from Hull City Council. I never remember her name but she is lovely so I will make sure I find out. Sarah, our Health Visitor and Val, his key worker in nursery who specializes in SEN (special educational needs)
As always there is always good and bad news whenever we have an update…
Unfortunately all parties agreed that there had been little to no progress in regards to Williams development since he was initially granted level 2 funding. This was very disheartening even though we agreed with it 💔 He has now been awarded Level 1 funding which means Val will be with him all the time at nursery. This unfortunately means he won’t be spending any time with Linda which may cause a slight regression in his behaviour due to their bond but will be for the best as she isn’t SEN trained and can’t do some of things with him that Val can.
We touched on the subject of schooling 🏫 and whether he would attended a special school, a standard mainstream school or a mainstream school with special needs provisions. Although it is too early to make a decision we are putting steps in place to ensure that no matter where he enrolls he has all the support he needs. This includes setting up a PCP (person centered planning meeting) which is to help plan certain aspects of Williams future. Starting the EHCP (educational health and care plan) process. This is needed to be put in place to ensure William would be granted a place at whichever school would be best for him regardless of catchment areas. A referral is also being sent to the Outreach Team that deal with Ganton & Tweendykes special schools who can help support him both at nursery and at home🏡
And now for the bad…😢
Williams referral to the Autism Panel (this is a bit like the X-Factor panel but not as shit) mentioned in my previous post was stuck in limbo. Based on the Paediatricians letter he expected our GP to do the referral. We had called them the day after the letter was sent and they had confirmed it was received and they would process it. BUT… It turns out that GP’s can no longer submit referrals of this kind and it can only be done by…
A Paediatrician (WTF! why didn’t he do it?)
A speech and language therapist (We are still waiting⌚ apparently we are near the top of the list, have been allocated a therapist but it won’t be until next year)
Sarah said as this has recently just changed she will speak with our GP, confirm what is happening and if nothing was in place she would call the nursery manager and ask her to put the referral though. She promised to let us know later that day.
We knew from an early age that William was struggling developmentally but today it was confirmed exactly how much of a delay there was. His current development is within the age group of 0 – 11 months. This hit us like a bus 🚌 as neither of us imagined he was that far behind. This doesn’t mean he can’t catch up to his real age but the wider the gap the more difficult things will become for him but we can only take each day as it comes.
Sarah called later that day as promised showing us yet again what a superstar she is ✨ No referral was in place! She advised she wasn’t going to ask the nursery to do it… My heart sank until she explained why. She has asked our GP to refer us back to a paediatrician who can assess William to rule out any other issues and make the referral to the ASD (autism spectrum disorder) Panel. This would prevent any further delays down the line should he undertake a Triage (this is an assessment to see if he actually needs to go to the ASD Panel at all) and they ask for this then delays his diagnosis even further (No fucking wonder there is a 2 – 3 year wait!😡) She will chase this up for us in a few weeks if we haven’t heard anything. I honestly couldn’t praise Sarah enough for all the support she gives us.
When Dave and I left the meeting we agreed not to talk about it until we got home to let it all sink in. We don’t drive so it was a very silent and uncomfortable bus ride. Our discussion was so positive about what we can do for him in the future, how we will handle any obstacles and how much we love him.
But Dave wasn’t feeling positive and he was trying to be strong for me. He was devastated and broke down. ‘I just want him to be happy’ he cried. And then I cried. Not because I thought William was going to be unhappy but because Dave was crying and he had all the same fears as me. ‘He is happy and we will keep him that way. Today’s meeting doesn’t change that‘ Dave has seen the same videos you guys probably have of Autistic children have meltdown in the middle of things that most people take for granted like getting a haircut (we have cut Williams hair may times including once when I was using the clippers and the guard fell off… we had a bald child for a while), going food shopping or a change to their routine etc.
We will cope with these things if they arise. We may not cope well but together we will do it.
William was sent home from nursery with a letter inviting us to a ‘TAF Meeting’ on 5th August 2019. It was just slipped into his bag like it was nothing. What is a TAF meeting? We had no idea and no one explained it to us so obviously I turned to the internet.
The internet is a wonderful thing but also an evil thing and you shouldn’t believe everything you read from unknown sources but that didn’t stop me… phrases swam around on my laptop like. ‘child at risk’ and ‘social services involvement’ I should have just called the nursery or my health visitor and asked what the meeting would entail but my fear and anxiety stopped me. I would rather be ill informed with my head in the sand.
We are very lucky to have a great support network and my boss Debs who also happens to be my best friend (no special treatment. I promise) forced me to take the day off work to attend as initially I was going to let Dave handle it on his own which I know is really selfish of me but I wasn’t in the right mental place to hear bad news. The Hobmans, Debs and a small group of other people had slowly been dripping the idea to us that William needed extra support so that when we were finally ready to admit it to ourselves they were on hand with their knowledge which they had accumulated whilst we were busy brushing them off. We are incredibly grateful for this even though we may not have said it at the time. Without the likes of my amazing mum and friends we may not be where we are now. So please if you are starting your own journeys look at your family and friends and truly appreciate them for what they are. A support network who will sooth you when you cry, listen when you are angry and give you a life vest when you feel like you are drowning.
We went into the meeting completely unprepared and scared about what would be said and how these people would judge us. I took a notebook and made 3 notes that to this day I have no idea what I had written. Just indecipherable words.
It was after this day I made our first public post on facebook…
My facebook is private and I only accept people I know well so I was shocked when I started receiving messages from people on my friends list about how they are going through the same, have concerns about their children or have been down this route and had a diagnosis etc.
I had felt so alone in what I was going through and had no idea there were so many others out there. I decided I would keep posting updates so people could follow our journey. It then stopped been because people were mean behind our back and became about reaching out to people like ourselves.
‘Why haven’t they done something sooner? It’s obvious there is something wrong with him. He looks real dopey in all his pictures’
It was the above comment made by a ‘friend’ and this spurred me on to publicly post Williams journey on my private facebook page. The main reason was to stop people talking about us without knowing the facts but now I want people to know every aspect of our journey so that should they be going through something similar they know where to start on their own journey or even feel less alone.
For the first two years of Williams life it was easy to ‘sugarcoat’ the things he couldn’t do which was a defence mechanism against those awkward questions.
“Is he not walking yet?” “Why doesn’t he acknowledge me?”
We became so used to answering these questions that our responses became very rehearsed.
“Well let’s face it, he has a moon head like his mummy and because of that he struggled to sit up until he was 10 months old. He just needs to build his neck muscles because it’s a big weight to carry” we would laugh it off because when he born the doctor measured his head 3 times to check he had it right. His measurements were all in the 25th percentile except his head which was in the 91st and in all fairness the Hobman side of the family do all have massive noggins 😜 “He is just ignorant bless him. There’s nothing wrong with his hearing he can hear a packet of crisps being opened from three rooms away”
William was 26 months old when we decided to send him to nursery for the first time, one full day a week away from us to help with his socialisation and communication skills. We should have done it sooner and believe me people mentioned it. BUT have you ever tried to find an extra £190 a month?! We work almost 65 hours a week between us but with bills to pay its a lot of money but we managed to find it.
Williams 2 and a half year check up wasn’t with his usual Health Visitor; Sarah, it was with a stranger in a health centre we had never been to before which immediately put us on edge. We had received the usual questionnaire about what he can and can’t do and when we sat down as a family to complete it we had to remind ourselves not to exaggerate and be brutally honest about which areas he was struggling in. Dave found this exceptionally hard as he was more in denial than myself and at that point wouldn’t engage in the ‘What if?’ conversations.
Looking back the lady who carried out this development check was lovely but on that day she was the devil 👿 She stopped what she called ‘the assessment’ and in my head she said “You’re sons a fucking retard so there no point in this” however what she said actually said is something along the lines of “I think we should stop as I don’t to want to upset William but…” We sat on the wall outside the health centre in full view of the main road and cried; we cried for the dream of a normal child, we cried because why would this be happening to us? We had tried so hard for a baby and done everything right! How would we tell people? Is it our fault?
The health visitor came to our house within a week after our meeting with the devil and continued the assessment. I always feel much more at ease with Sarah than other professionals. She has that reassuring way about her that people’s mums and grandparents have that just comes naturally to some people. She spoke through Williams development and what he was and wasn’t excelling in and said ‘the devil’ had told her she had referred him to a speech & language therapist and Sarah agreed it was the best step and she too would refer him on top of speaking to his nursery about his needs. At this point she had no concerns that he could be on the spectrum.
It was the Easter whilst waiting for the next step that the above comment was made and it really hurt as it was a big step for us admitting something wasn’t right for a close ‘friend’ to then say something like that. Especially as said ‘friend’ had known me almost all my life. She has never spoken to me about what she said or about anything else to be honest since I found out. She has defended herself to others. This person had attended or been invited to such big events in my life that I missed who I thought she was for a long time but she was obviously never that person. As time has passed I often think I should thank her for been the kind of person that would say things like that about a child because it made us become more open about what we are going through not only to ourselves but to a much wider audience.