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?
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.
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! 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.
Autism speaks! William doesn’t, but true love needs no words…
But our son isn’t disabled…Have you ever been asked to admit something you aren’t quite ready for?
Today our Health Visitor came to go through DLA with us, This is to help us financially support William as he gets older and ensure all his needs are adequately met. I was warned that the forms are not pleasant. Well they are in fact 61 pages of hell!!! 😢
Is my son classed as disabled? I’ve only just plucked up the courage to tell people he has special needs, I know this is just me focusing on the wording but it stings to think that people will class him that way.
Getting hold of the form was hard. We went to the Wilson centre who told us to go to Jobcentre. We went to the Jobcentre to be told we needed PIP forms and to call a certain number… we don’t need PIP forms as he is under 16 but no we apparently needed PIP forms. WE DIDN’T!
There is no hiding from anything with the DLA form. Right from the beginning where it asks you to tell them what is wrong with your child and when did you notice? He has a severe developmental delay and I picked up on it from when he under a year old… It doesn’t give you the option to tell them you have your head in the sand for a year. That you were scared to admit it out loud.
There is then a full section about how he walks and gets around, which we aren’t allowed to fill in until he turns 3 so we will be doing it all again in March.
The rest of the section asks you to put time on things he can do or things you have to do for him and this is heartbreaking to fill in. I think the worst part was admitting how difficult bath times can be. He is fine sitting in water but as soon as we need to actually wash any part of him it becomes a traumatic experience. it can often be a 2 person job to bath him, one to hold him down so he doesnt hurt himself and one to wash him as adequately and quickly as possible.
We sent the form off and have a long wait ahead of us to find it if we are eligible, it can take 40 days for an initial answer and should his application be refused, we could send an appeal against their decision which will take more time.
Once again I can add this to the ever expanding list of things we are awaiting confirmation for…
Its been a tough few weeks recently, William seems to have regressed in his behaviours and seems to be lashing out at me more than usual. Not his dad just me… what did I do? He purposely scratched my face when he was frustrated which I’m not going to lie hurt like a motherfucker! the valuable lesson I have taken from this is to make sure I keep his nails short however cutting them is an awful and thankless task. Imagine if an octopus had claws on each tentacle and you had to avoid 7 of them whilst pinning the other one down, that’s what its like cutting his nails. Except that the octopus is screaming and biting to get away from you.
Today we had a full on meltdown because I wouldn’t let him eat ‘another’ packet of Parma Violets. He went to find more and threw them all over the floor before throwing himself down too and refusing to get up… I tried to lift him but he’s very smart and makes himself go all floppy! considering developmentally he is less than a year old he does show some terrible two traits which we were told is a good sign (insert eye roll here 🙄)
His sleep is very disturbed now. From the moment we brought him home from the hospital he slept for 7pm until gone 10am and we had to wake him up not the other way round. People called us lucky. I don’t feel lucky anymore. He goes to his room at about 7 to 7.30pm and precedes to destroy his bedroom for a good hour or more. Draws opened and emptied, everything he can physically reach ends up on the floor and in pieces. Juice everywhere and if we are very ‘lucky’ he will often smear the contents of his nappy around the room. Three times this week we’ve had to hose the boy down in the shower and disinfect his room and carpets ready for the next day… we go through a lot of sheets and a lot of wash powder. The washing machine is always on.
This is most likely our last post until after the Christmas holidays so I want to end it on a positive note!
William has an appointment with a paediatric neurodevelopmental specialist in January 2020… this confirmation is correct and came after Sarah⭐our amazing health visitor called our GP due to the last referral debacle.
We hope you all have a very merry christmas & a happy new year! 🎄🥂
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?
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.