Posted in Brief updates

In a GAP

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.

The look of pure joy that he is naked and put of his awful onesie

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…

  1. Our GP sent a referral to the community nursing team
  2. The community nursing team rejected this as he is under 4
    • NO ONE NOTIFIED US UNTIL WE CHASED THE REFERRAL
  3. Our GP sent a referral to paediatric medicine
  4. 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
  5. I chase the paediatric medicine team who told us what they had done
  6. I call the GP and they tell me to call the community nursing team
  7. I call them and they only know about the original referral and won’t accept another one as he is still under 4
  8. 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
  9. 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
  10. 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
  11. She is going to call our health visitor and William’s own paediatrician for help and call me back
  12. 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!
  13. 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?

Posted in Appointments

Blood Ties

The purpose of literature is to turn blood into ink.

T.S Eliot

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.

Poorly hands 😦

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.

Posted in Appointments

Triage

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

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

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

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

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

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

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

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

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

What happens next?

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

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

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


November/December 2022 – What a brilliant Christmas gift that will be for us that year 🎄🎁

Posted in Causes

Behind the eyes

As many of you may have read previously William has been at the Hull Eye Hospital a few times to check his eyesight.

When children lack eye contact, depth perception and hand eye coordination the word autism doesn’t automatically spring to mind. Doctors and healthcare professionals will try to rule out any other issues and William’s visit to the Eye Hospital was one of his first exploratory check ups.

I want to tell you about the Hull Eye Hospital and how brilliant they have been with us. The staff are all so welcoming and were knowledgeable on how to deal with a child like William, they had a slew of highly engaging toys in order to try and get him to look in the right directions so they could look at his eyes. The waiting room for children however leaves a lot to be desired which is a big reason for my post but we will get to that. They make the most of the area they have and fill it with toys and books and sometimes very noisy children waiting for theirs or their siblings appointments. This atmosphere for children like William isn’t ideal but it is still much better than most places offer.

Hospital Chief Finance Officer, Lee Bond, is going to be doing something that some of us only dream about… well in my case have nightmares about, exercise!!! To be more precise he is planning on running the London Marathon, that’s 26.22 miles. Unless my math is exceptionally wrong (a high possibility) that works out on average if you were to walk it 52,440 steps

His goal is to raise £10,000. This will enable the opening of a sensory room for children with additional needs attending the Eye Hospital at Hull Royal Infirmary. The marathon is 5 months away (granted it has been postponed as should have been April I believe) they are only 59% towards the target which I’m hopefully can change quickly in the coming months.

For us as his parents any appointment brings upon anxiety and irrational thoughts. ‘What if he’s blind?’ ‘How will he handle wearing glasses?’ Etc etc… however as you are probably aware William’s eyesight is fine although he is due another check up before he can be discharged.If it brings anxiety out in us can you imagine how the child feels? An unknown clinical place, strangers and odd smells, waiting around without your usual security blankets (William’s are currently our metal egg poacher, his changing mat or the dog) Imagine not understanding why you are in this odd place or why people are trying to force eye contact upon you when you don’t want it and never have. Waving pictures your face and holding you still.

A sensory room could lessen the trauma for patients like William. There are multiple types of sensory rooms however the main focus is to help children feel comfortable and calm, explore in a safe environment and engage childrens sense. I think we could all use one in our workplaces or even right now in our ‘home offices’ also known in our house as a baby changing table next to a window.

Please think about any savings you have made whilst we have been on lockdown and try to dig deep to support such a wonderful cause that will help so many! So I implore you, please spare anything you can and use the link below to donate. X

https://uk.virginmoneygiving.com/charity-web/charity/displayCharityCampaignPage.action?charityCampaignUrl=HullEyeHospitalSensoryRoom

Posted in Causes

Not worthy

Look at these faces… remember them x

I recently read an article detailing the fact that a doctors surgery in Somerset sent a letter to Voyage Care, a facility in which supports adults with Autism and other learning disabilities.

The letter stated that the adults in their care should all have a DNR agreement in place in light of the current Covid-19 pandemic. In case you don’t know what DNR stands for it means do not resuscitate which basically means that if your heart stops or you can not breathe then medical staff will not issue CPR. No chest compressions. No mouth to mouth. No respirators. No defribrillation.

The ethics of asking anyone to sign or agree to a DNR is shaky at the best of times.

This letter was sent without any consultation with the families of the adults in question. Having any form of learning disability is never a reason to decide not to help someone to survive!

The British medical association states that a blanket DNR targeting one group is completely unethical and unacceptable. But then that raises the question of who authorised this letter to be sent in the first place! There is a huge stigma around those with learning difficulties including Autism as many people do not fully understand. We as a family are still only dipping our toes into the waters of understanding.

I simply can not understand how anyone would think it was ok to send such a letter! Can you imagine either been that ignorant or prejudice that you decide a whole group of people don’t deserve to live? Look at the people who pump themselves full of drugs and alcohol… they deserve transplants and a second chance at life but my boy when he is older would not?

Remember Emma, Mark, Martin, Ted, Tom and Warren? If not scroll back up and take a second look…

In 2007 Mencap published an article called ‘Death by indiffernce’ that highlights the fact there is an institutional discrimination within the NHS which leads to those with learning difficulties getting a substandard quality of care or in some cases none at all.

Emma. July 2004. 26 years old. Emma had a learning disability, this mean she often exhibited challenging behaviour and had difficulty communicating. Emma had Lymphoma B1 cancer. Her survival chance was 50:50. Her treatment was delayed on multiple occasions as she could not consent to it. No pain relief was given. The high court had to get involved and when treatment finally started palliative care was the only course to take.

Mark. August 2003. 30 years old. Mark had a severe learning difficulty and very little speech but he had his own way of communicating with his family. Mark broke his femur and had an operation which resulted in him losing a lot of blood (40% of it to be precise). The staff also failed to give him his epilepsy medication. He was discharged despite still incurrring pain and had to be re-admitted on multiple occasions. It took 3 days for the pain team at the hospital to see him. He died less than 9 weeks after his operation. The medical staff involved did not believe Mark’s family when they told them something was terribly wrong with him.

Martin. December 2005. 43 years old. Martin had a learning disability and no speech. Martin suffered a stroke and was sent to hospital were he contracted pneumonia. The stroke effected his ability to swallow so he could not take in food or water orally. He was placed on a drip which he didn’t handle well and often pulled out. On his second week in hospital it was established that the drip wasn’t providing him with the nutrients he needed. A speech and language therapist visited him repeatedly and advised he should be nil by mouth and other methods of feeding should be introduced. He was in hospital 3 weeks before they decided to intervene and by then it was too late. His veins had collapsed and a PEG feeding tube needed to be inserted but he was too unwell to withstand the operation. Martin went 26 days without food and nutrients before he died. The hospitals policy was to introduce alternative methods of feeding after seven days but they failed to adhere to it costing him his life.

Ted. May 2004. 61 years old. Ted had almost no speech and a severe learning disability. He was admitted to hospital with urine retention requiring a minor operation and remained there for 3 weeks as he suffered a mild heart attack and a post operative infection. His condition was assessed as concerning but the hospital pushed to discharge him back to his residential home. He was sent home and collapsed and died the following day. Following an inquest it was established that he had died from aspiration pneumonia.

Tom. May 2004. 20 years old. Tom had profound and multiple learning disabilities. Tom’s school advised his parents his was distressed but presumed he wasn’t happy there however they knew he was distressed because he was in pain and pushed for medical investigations. A consultant stated further testing was needed but it seemed to be an issue with his digestive system. No further investigation took place. Tom’s doctor decided against a PEG feeding tube because of fears Tom wouldn’t tolerate it. There was no discussion of alternative feeding methods with his parents. After school was over there was nowhere suitable for Tom and he was placed in a psychiatric unit who stated they would assess his needs and act upon them. They didn’t. Tom was losing weight fast and expressing some disturbing self mutilating behaviour in which his parents were sure it was him expressing his pain. Tom was moved to a social services residential home who admitted him to hospital. Tom had an ulcerated oesophagus. The hospital agreed to fit a PEG and the operation was carried out. Tom died before he could receive the nutrition he needed. So many different agencies look after Tom before he died and no actions were carried out resulting in his death.

Warren. September 2004. 30 years old. Warren had a severe learning disability and very little speech but could communicate well with his family. When Warren first showed signs of distress his parents called the doctor out on three occasions. His parents had their suspicions that he had a problem with his appendix or bowel but the doctor said no. A month down the line they called the doctor out again as he was having trouble swallowing and losing weight. They were told it was a virus. As he was not eating he was also not getting epilepsy medication as it was administered via his food. The doctor gave paracetamol and diazepam to calm his seizures. The next day his parents called an out of hours doctor out who told them to take him to hospital for a stomach xray but that nothing was seriously wrong. A few hours later they called him again and an ambulance was sent. Warren’s parents deceived a negative attitude towards Warren by the hospital staff. 2 hours after admission Warren had died. It was his mom who noticed he had stopped breathing. He died of an infection caused by appendicitis and a blockage caused by a paralysed bowel. Warren could not communicate but multiple people refused to listen to his parents concerns despite them knowing him better than anyone.

Remember them… they are only a small selection of people.

It took the deaths of Emma, Mark, Martin, Ted, Tom and Warren to bring about an inquiry into the inequalities within care that people with learning disabilities face.

Death by indifference: 74 deaths and counting…5 years on. Published in 2012 contained multiple case studies. Including the below remember them; Sophie, Kirsty, Lisa Barbara T, Daisy, Chantel, Carole, Kyle, Betty, Maria, Barbara D, Christian, Karen, Clive, Paul, Tina, Brian, Christopher, Ronnie, Kelly, David I, Michael, Alan, Sandra, Anne, Nicholas, David T, Sammy, Susan, Noel, Raj, Jasseke and 15 unnamed people.

Seems like a large number doesn’t it? Well almost 1200 people with learning disabilities die unnecessarily in hospital each year! Mencap have launched a campaign called ‘treat me well’ which advocates in making simple changes which will have a big impact to the way in which hospitals deal with patients with learning difficulties. I have signed up for as much information as possible in regards to the campaign so hopefully we as a family can get involved in making things better because let’s face it… it couldn’t get much worse.

Mencap, the voice of learning disability.

Posted in Appointments

1 step forward 👣2 steps back 👣👣

That face though 💋

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?

Posted in Appointments

The ‘TAF’ Meeting Part 2

Tuesday 19th November 2019… We were going into today’s meeting much more prepared than its predecessor. We went armed with my trusty notebook full of comments, questions and observations.

‘TAF’ meetings – Team around family meetings.
They basically do as they say on the tin. Its a meeting in which the agencies involved in Williams development get together with his family to make sure we are all on the same page in order to help William as he gets older and to make sure we are all doing what is best for him.

Today’s guest appearances came from a member of the Early Years Development Team from Hull City Council. I never remember her name but she is lovely so I will make sure I find out. Sarah, our Health Visitor and Val, his key worker in nursery who specializes in SEN (special educational needs)

As always there is always good and bad news whenever we have an update…

Unfortunately all parties agreed that there had been little to no progress in regards to Williams development since he was initially granted level 2 funding. This was very disheartening even though we agreed with it 💔
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)
  • The Nursery

Sarah said as this has recently just changed she will speak with our GP, confirm what is happening and if nothing was in place she would call the nursery manager and ask her to put the referral though. She promised to let us know later that day.

We knew from an early age that William was struggling developmentally but today it was confirmed exactly how much of a delay there was. His current development is within the age group of 0 – 11 months. This hit us like a bus 🚌 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.

Posted in Appointments

In Black and White

A Nasty Reaction

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.

Our 3rd Post

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’

Posted in Brief updates

My Early Birthday Gift

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.

Our 2nd post

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.