Males inherit the X chromosome from their mothers, the Y from their fathers.
Williams results from the genetics testing came today and its a bit of a mouthful but… there was a variation from the normal pattern wirh interstitial hemixygous copy number gain Xp22.33. The test states there is additional genetic material.
Chromosome 22 is the second smallest human chromosome (21 is the smallest) including more than 51 million DNA sectors (they’re in pairs) and represent between 1.5 and 2% of the total DNA in cells.
There is no defined link between this and autism but there are a few case studies referring to it and those with learning difficulties but not enough research has been carried out. Its is classed medically as having uncertain clinical significance.
If it has come back as nothing detected that would have been shit but manageable.
If something would have been detected on his Y chromosome I wouldn’t have blamed Dave but I am sat here now blaming myself. After all the X chromosome came from me.
Have I done this to him? To us? The paediatrician will be booking in a consultation to discuss the results in more detail and establish if further investigations are needed but now I’m terrified of what they will say… will further investigation point the finger at me even more?
I just feel like I’m back at the beginning of our journey, like all the progress we’ve made in our acceptance and grieving over a child we thought we would have hasn’t mattered and I’m back to looking at him and crying because this could all be down to me.
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?
People often struggle to differentiate between a child with autism and a child who is being naughty.
As a parent who suffers with anxiety it is very difficult to go to certain places and deal with other people who don’t know William like we do.
Something as simple as a journey on a bus can set me into a tailspin, a small journey can lead to an argument due to the fact other passengers look at William as see what they deem as an ablebodied 3 year old in stroller taking up a space they feel someone else needs more. Not all disabilities are visible and what give you the right to assume!
A trip to a supermarket can lead to a full meltdown due to the hustle and bustle of different people, a different environment, bright lights and loud noises. One the rare occasions he will walk, he will often end up laid on floor and go floppy because he can’t handle the stimulation and lack of familiar surroundings and comfort. This is not a toddler having a tantrum because he can’t get sweets or doesn’t want to walk, its because he is in pain.
When we go to a restaurant, cafe or bar he will beeline for any food he can see, we will stop him before he takes it but it can lead to awkward conversations, dirty looks and whispered remarks. This isn’t because he isn’t fed at home or because he is rude. This is because food is such a high motivator for him and that the fact it doesn’t belong to him doesn’t even register.
I shouldn’t have to apologise for my son for being himself but I find it becomes a more frequent occurrence as time goes on. I shouldn’t have to explain why he is the way he is, there should be a wider understanding of the autism spectrum leading to acceptance.
I truly believe that autism awareness and understanding should be educated in schools so that future generations don’t make the same mistakes and assumptions. There are no definitive figures of those with autism as no record or register is kept but based on recent surveys 1 out of 100 has autism.
Think of the children in your child’s year at school, think of the children who you went to school with. I wish I had been more aware, more educated and a better person.
I want that for the future, for children like William and for parents like us who often feel we should apologise on behalf of our son when maybe, just maybe they should be apologising to us for their small mindedness.
There are a few words everyone single person in the world is fed up of hearing right now so I will just get them out of the way… * Coronavirus * Quarantine * Lockdown * Furlough
Not many people think like me but if you read my last post you will be aware that I rely on my job for a little break; a cheeky three day holiday in which I am not Mummy but I am Marie and Marie never has snot or other bodily fluids on her clothes, Marie very rarely has to speak to her colleagues in baby-talk and she can have a conversation which doesn’t end up getting hit or bitten. I love been a mom but I need that time to be Marie… Sometimes I forget who she is.
I know it was a risky thing to want but my goal was to stay in my office as long as possible, to maintain my routine (and in turn Williams) but also to keep hold of my sanity. I cried when I was told I would be needed to work from home, not just little tears but load messy ones. 😭
Dave tried really hard to let me work in peace in my little office/bedroom but it proved a little too difficult to forget I was there, especially during a particularly bad nappy explosion which I would have usually avoided had I been at work.
I made it through two shifts, The Wednesday of the first week and the Monday of the second. I’m not going to lie I probably did more work on those days that I would have done at the office because there were no distractions, Head phones on, blinds open and frantically typing away. On the Monday an email came out stating furloughs were on the cards and would be discussed with our line manager that day who would be in touch… Hours felt like days and then the call came. I was being furloughed and would not be allowed to work until further notice… this was indefinitely with no end date in sight. From a business perspective it makes perfect sense and I knew I would be one of the first on the list because lets face it. How much training can I do on my own in my bedroom. I had loads of material to work on but that isn’t a necessity. My complete access was revoked within 2 hours… ‘HELLO!!! I STILL WORK THERE!!!’ I can’t even sign into my laptop to write on here or play bloody solitaire. I can’t do anything… indefinitely. My anxiety kicked in; I didn’t finish my last presentation! would I ever finish it? It was really good, or I think it was but I can’t even check!
I’m still getting paid which is amazing as it means I can still provide for my little family but it does worry me that if this doesn’t end soon will all of us on furlough be first on the chopping block for redundancies… As HR put it: My role was identified as one in which the work can be absorbed by other areas of the business… what if they realise this can be done permanently? Now I have this little nagging feeling that I made a mistake when I changed my contract even though it made me eligible for my new role and I love my job but the little niggle is still there and i know it is completely irrational. I mean I know my work didn’t release this virus to get rid of me but that doesn’t stop my brain thinking all sorts 😷
William has been on top form since nursery closed its doors about three weeks ago. If you have read any of our previous blogs you will be well aware we are all slaves to his routine because he can not handle any changes. Plus lets add Chicken Pox to the mix because things aren’t difficult enough for him!!!
One of the first things that happens when something changes in his routine is that he stops eating and since food is such a high motivator for him that it is always a massive concern to us. He usually goes one or two days and will not eat a single thing, no matter how many of his favourite things we try to bribe him with. Popcorn – NO Cake – NO Sprouts – NO Chips – NO Mummy’s flesh – ALWAYS!
After a while he will start picking at small amounts. The dog loves these days as William will bring food to his mouth but then throw it behind him or just shove the full plate to the floor. Rusty eats so well on these days 🐕
The following day he will be ravenous and will demolish adult sized portions and then start on mine and Dave’s too. Occasionally the dogs and almost always any bits of paper he can get his hands (or should I say teeth) on. Unfortunately his poo doesn’t come gift wrapped like I so often joke.
Speaking of shit… Williams Neurodevelopmental paediatrician says its not uncommon for children with autism to have ‘lazy’ bowels which makes sense as he has never been regular but when it finally comes its usually uncontrollable and smeared all over his bedroom 💩 He doesn’t even care when he has been (the phrase happy as a pig in shit has never been so true 🐷) so it often goes unnoticed until the smell hits us 🤮 however there has been an exception recently… during a nappy change he crawled onto my lap for a cuddle or so i thought. He giggled and pooed all over me!!!
The other day on one of his no food days William decided he didn’t want to be anywhere near me all day. He stayed in the same spot on the sofa only moving to lift his arm for his juice. He didn’t sleep, he just laid there for hours staring into space. after a few hours he crawled on to my lap and curled up like one of those yappy little Yorkshire terrier type dogs. It was cute and I felt privileged he had come to me for some comfort. I welled up a little and stroked his hair and in return he threw up all over both of us and then for good measure all over the rug too 🤮 Every parent has to deal with messy incidents but William absolutely detests getting s bath or shower so it always results in more trauma for him… and us.
As time has passed he understands what no means but choose not to listen. He will stop what he’s doing, pretend to do something else and then decided to do it anyway. Last Thursday he was doing everything he usually knows not to, The things that could result in him getting hurt. He climbed on top of the TV stand and tried to pull the TV over… “William No!” He climbed the dining table and threw the contents to the floor… “William No!” He rattled all the kitchen cupboards. Purposefully spilt his drink on the floor. Fed the dog his breakfast. Threw the plate on the floor. Hit me when he realised he had no food left and then preceded to flip his table and chair. “No!” “No!” “No!” After a few hours I had to lock myself in the bathroom to get away from my 3 year old and have a cry… He cried the entire time I was in there whilst rattling the door handle #badmom I just needed a few minuets to let it out away from him and compose myself as he doesn’t understand when I’m upset or frustrated.
He knows I shouldn’t be at home, He knows he should be at nursery and he knows when he hasn’t seen Big Nanna. I don’t know if he will get used to this craziness and I don’t know if I want him to? I’m praying this ends soon. If he gets used to it things will be easier for us but then we will have the same battle on our hands if things get back to normal… not if! WHEN!! WHEN THINGS GET BACK TO NORMAL!
We call Big Nanna every day so he can hear her voice and she can hear him laugh and chunter…She sings round and round the garden to him and I do the actions. It adds a small amount of normality and routine to our long days but it makes me sad. He has a certain smile that he saves only for her and I miss seeing it. I miss seeing Nan’s face when he immediately leads her to the biscuit barrel or the mischief in his face when he finds both doilies in her living room and places them together (usually on the floor) The bond they have is so special and if i’m honest it makes me a little jealous sometimes but I wouldn’t change it for the world.
I worry about Williams development now more than ever as he has been showing slow but wonderful improvements recently after a lengthy period of no change or even regression and I panic in case this drastic change causes him to regress again and it was devastating last time but he is slowly edging into the up to twenty months bracket and I really want him to get there. No movement is better than moving backwards but only time will tell. Will this be over in time for his PCP meeting in May. They told us it was a really important meeting to get his EHCP in place ready to start applying for schools in winter. Will this happen? What if because of this virus we can’t have our meeting, meaning he doesn’t have an EHCP, meaning we can’t get him into a school that would be suitable for his needs? Lisa (early years team) called to check we were OK and asked me to call her if I needed anything. Why didn’t I ask her these questions? If there is no end in sight by middle of April I will call her. I also need to chase his blood tests and genetics testing as we never heard anything and we are unlikely to do so now. Also no follow up appointment with his Neurodevelopmental paediatrician. Its crazy because its not essential healthcare but it is to my boy! it is to me! I feel utterly selfish thinking about these things but if I don’t who will?
I have always worshipped my Dad. I always wanted to gain his approval. It’s not that I didn’t already have it but I didn’t want to risk losing it. I waited until I was married before we started trying for a baby, You know the ‘right’ way.
I spent summers walking around garden centers with him as he picked out new plants for his pond, I spent nights listening to Jim Reeves and Johnny Cash and he used to let me stay up late unless I yawned… as soon as I yawned it was time for bed. This was a great trick I planned to use in the future.
My dad was the only boy out of three. He had an older sister and a twin sister. His eldest sister had a daughter, His twin had 2 daughters and he had Me and Helen. Helen then had my beautiful Niece. When we finally fell pregnant I was desperate for a boy. I had always wanted a little boy, I’m not sure why but deep down I think it was secretly for my dad. I tried to convince myself we were having a girl so that when our 21 week scan came round I wouldn’t be disappointed.
Now I don’t know if you have ever seen a baby scan at 21 weeks but they dont look anything like a baby. In fact William looked like an alien 👽 the print out we received was a close up of his terrifying little UFO face. As you can see he was cute and peanut shaped in his 12 week scan above and developed into E.T over the following 9 weeks. We didn’t even need to ask what sex he was because the little exhibitionist that he was had his legs open the entire time, every time the sonographer tried to obtain measurements of different areas he moved to once again show us his little todger. 😲
Holy shit we were having a boy! We were having a William Graham (my dad’s middle name and Dave’s dads first) and not an Alyson Rose. We immediately went shopping and purchased every blue baby grow we could find at Next, Matalan and Asda 💸
I called the Hobmans and dad had said he knew one of us would break the curse eventually 🙌🏻 I was so glad it was me.
I had visions of my dad taking him fishing, Dave taking him to watch Hull FC and eventually enrolling him a rugby club. 🏉
Throughout our journey so far I had avoided discussing it with my dad, I don’t know why. Would he blame me? would he treat William differently? would he even understand? My mum had always been the one to give him any updates before I shared anything publicly as I wasn’t ready for that conversation until it appeared in black & white and she asked me if I was telling him myself… and I did. I made that phone call and held it together long enough to tell him what we knew which even though it wasn’t alot, was still enough. I don’t remember the exact conversation but my dad, who has never been a man of many words simply said something along the lines of ‘Well it doesn’t matter does it. He’s happy and that’s all that matters and has two parents who are doing a great job’ conversation over. There was an immediate relief that rushed through me and I sat a cried. Not silent tears but loud, snotty, messy ones. I couldn’t even explain why I was crying and Dave just held me.
My dad has always had William few hours each week until I get home from work. They both seem to really enjoy this time together as they are always snuggled up when I get home as you can see below.
Tonight I took a leap and I went to see my dad and for the first time we spoke face to face through Williams next steps. He was so positive and encouraging. I’m not going lie, It took all my strength to hold it together and not cry.
I feel guilty about thinking he would be any different. He had never done anything that indicated he would be but in my head we were letting him down. Even though I am now 30 I still need him to be proud and tell me everything is ok.
He treats William the same way he always has because his difficulties don’t change anything. He is still our son and his grandson and if my mum voiced her suspicions to him like she did me then he probably knew William was struggling long before I could admit it to myself.
They can still go fishing 🎣 or do anything else a grandad does with their grandson; They can kick a football in the park, walk Rusty together (as long as William picks up the poop 💩) or as time goes on, go to the pub where my dad can hustle him at pool like he did with Dave and my Father in Law 🎱
I think a lot of my fears are down to my own insecurities which I then project onto others in an attempt to appear stronger than I actually am but I think as time ticks by I am getting better at being more open not only about Williams needs but also my own emotional ones.
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.
I feel like I need to put a little bit of context into the above photo; whilst visiting Williams Big Nanna (my Nanna) like we do every Sunday he had a little red spot on his hand and 2 on his face that seemed to have appeared out of nowhere. As the day went on a few more appeared but he was fine within himself. Dave took him to the pharmacy in the morning as he had a few on his feet too… ‘Hand, Foot and Mouth’ they said. They can’t be wrong can they? We kept him off nursery as we know how contagious it can be.
On the Wednesday whilst I was at work the rash had spread all over his little body and the boy was itching which doesn’t usually happen when children have Hand, Foot & Mouth. Dave called 111 for some advice and they sent paramedics to our house who decided to blue light him to Hull Royal Infirmary. Dave didn’t call to tell me…
I rang him during my lunch to find out how William was and he said he was waiting to get the boy checked over as his rash is was worse. ‘what times the appointment with the doctor?’ he wasn’t at the doctors, ‘are you at the walk in?’ No. He told me where he was and that everything was fine and was sat in childrens a&e waiting to be checked out, he didn’t mention the ambulance. ‘Do I need to leave work?’ No he was fine and just getting checked over and then they will be home.
I updated Debs and the Hobmans… Me, My Mum and Sister have a group chat. Debs told me to go and she would take over my work and My Mum and Sister both immediately called me. ‘Everything’s fine. I’m staying at work. Dave just wants him checked out’
3pm I call whilst on my last break… ‘everything is fine’ he says. ‘Do you want me to come after work and meet you both in a&e?‘ ‘well… err we have been moved to a ward. Just for observation though! he‘s fine’ Debs again pushes me to leave work… She knows me too well. She knows I don’t want to be there in case something is wrong… I don’t want to hear the bad news because if I don’t hear it then it isn’t true. I know it’s selfish of me but I could justify it because Dave said he’s fine even though I know he is just trying to protect me from spiraling.
William was in fact fine and they even made it back to our house before I did. Dave was armed with a letter of discharge stating it was Viral Urticaria (Hives) They had injected him with a strong antihistamine. This was especially nasty as they cant inject in one swift go but they have to do it over 60 seconds, so poor Dave had to restrain the boy whilst this happened.
RELIEF! all was good in the world. William was fine… we couldn’t pinpoint what had caused the reaction but he had recently finished a course of antibiotics (you know the kind; the tasty banana stuff🍌) for a chest infection, before that he had suffered with a Vomiting and Diarrhea bug. Maybe it was a reaction to the medicine or even just an after effect of been so poorly. We even thought it could have been a reaction to some cleaning products that was on Big Nans sofa as she had recently had it professionally cleaned. I messaged the family chat to update them. Great news! only Dave didn’t look like he had great news… and that’s when I saw it, I don’t know how I missed it. In bold lettering at the bottom of the discharge letter ‘Actions to be completed by GP: we would recommend that William be referred to the social communication difficulties team for investigations of possible Autistic Spectrum Disorder. We would be grateful if you could facilitate this’ The Paediatrician at the hospital had asked Dave about Williams behaviours and told him it was highly likely William had some form of Autism.
I cried, Dave cried and I’m pretty sure every member of our support network cried too.
When I told my Nanna she asked in hushed tones if I was telling people. ‘Of course we are. It’s nothing to be ashamed of’ she said she knows that but does she? Does anyone?
I asked my friend between sobs ‘How can I care for a child with special needs?’ ‘You already are and have done for the last two and a half years. This doesn’t change who William is or you and Dave as his parents’
William has been granted 2 year funding which covered an extra day at nursery during our ‘TAF’ meeting and the nursery had agreed to 1 : 1 support before receiving funding for it. The decision to grant this still had to be approved by a panel in order for the nursery to receive the funding and if this wasn’t granted the nursery wouldn’t be able to continue with it.
The phone call came on September 12th 2019… 9 days before my 30th Birthday and it was a gift that no others could beat.
His Level 1 funding meant that he would be getting 50% of his time with Val due to how his additional hours were worked out over the year instead of term time. I am sure Val is lovely (I hadn’t met her at this point as Dave does the drop off whilst i’m at work) but leaving his previous key worker Linda was a big adjustment for William as he had grown an attachment to her and he would continuously try to seek her out when he should have been with Val. What made it more difficult is that she spent the 1st day of the week with him. Due to his attachment to her it was decided that she would remain with him rather than moving to another room in the nursery to prevent him becoming upset when she wasn’t around
We had been asked by his nursery to have his eyesight checked due to the way in which he was making his way around the facility. This is the appointment we were referring to in our post. We had gone to the doctors to request this who told us to go to the optician… who told us they needed a referral from the doctor. We went back to our GP who said they would put an appointment across to Hull and East Yorkshire Eye Hospital. The letter came swiftly and I called my wonderful sister Helen who works in the hospital to ask about the consultant named on his letter… she had never heard of him. I looked on the online directory and nothing specific was given about said consultant. The Doctors couldn’t have got the referral wrong! could they? surely not!
My sister continuously asked about this referral to the point I was a bit shitty with her. Maybe she just hadn’t encountered this consultant before or he was new. She couldn’t know everyone at the hospital. She pushed and pushed so Dave called into our GP to confirm it was the correct type of referral. They confirmed it was. My sister was just trying to interfere… obviously that wasn’t what she was doing but its how I felt a the time.
Helen called AGAIN and said she had asked other people if they had met this consultant and they hadn’t… I called the national ‘e-Referral Service appointment line’ just to stop her pestering us and to prove her wrong. She was right! she usually is to be fair but at this point in time I was telling myself William was my child and I knew best and I didn’t need other people sticking their noses in. The GP had in fact referred us to a Mr Fleet a consultant in Children and adolescent services – Urology department. He specialized in Paediatric surgery. The referral was rectified by the appointment line who were very apologetic on behalf of our GP.
The appointment came and the staff at the Eye Hospital were fantastic… because let’s face how difficult it must be to conduct an eye test if the subject can speak, wont look at you or communicate with hand gestures. They ruled out any issues with his eyes but wanted a follow up appointment in a few months time to be on the safe side. We are currently waiting for this.
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.