I have written previously about death by indifference in a previous post, check that out here but if you don’t want to read it in full here is a little summary. It details the deaths of 6 people who had special needs and how failures in the care system surrounding vulnerable patients (particularly non verbal one) lead to their early deaths.
Today I want to talk about Betty Wattenbarger and Coco Rose Bradford, two very young girls with autism who sadly died after seeking medical treatment.
Coco was 6 years old was admitted to The Royal Cornwall Hospital in summer 2017 with stomach problems, It shouldn’t have had any effect on the treatment she received but Coco was autistic. She was vomiting, had bloody loose stools and couldn’t take in any fluids. A quick look on WebMD and it tells me that fluids are most definitely needed based on the symptoms, no matter the cause.
It also to me (no medical training at all) seems like common sense but this didn’t happen, she was sent home only to be brought back to hospital the following day despite the hospital staff telling her parents she was ok. The staff missed several opportunities over the course of 8 days to establish what was wrong with her and save little Coco’s life, but they didn’t. After Coco died it was discovered she had an E-Coli infection and Haemolytic uremic syndrome, the doctors and staff on duty said they found Coco uncooperative and non-compliant when questioned about the little girl’s death. As a child I was terrified of hospitals, doctors, needles and would fight my mom if she tried to give me medicine or clean a wound (this is why I had a piece of glass stuck in my knee for over a year 😳) imagine being autistic and having those feeling plus a million more running around in your head without been able to tell anyone what is wrong. Just like most parents of autistic children Coco’s parents knew something was not right and spoke on her behalf imploring the hospital staff to help her but it fell on deaf ears. The NHS has admitted key failures in Coco’s care following a report.
Sadly Bettys story is very similar, she was 7 years old, she had autism and was nonverbal, in 2019 she was struck by a fever in which was severe enough for her parents to seek emergency medical treatment in which they were advised by a nurse practitioner that it was just the flu and sent home with pain relief. No testing was carried out despite her father displaying concerns about her breathing. Sadly, she died the following day. He dad described the moment she was gone as the light leaving is house.
Her family believe that had it not been for a misdiagnosis she would still be alive today, if they had seen a doctor she would be alive today and if she had been able to tell them how much pain she was in the she would have received the correct level of care and not have died. The Texas medical board have refused to confirm if they are carrying out an investigation.
I speak from experience that when your child cant tell you what is wrong it can be difficult but you learn to know your child like no other and the thought of those that are supposed to help them refuse to listen is terrifying. We are naturally protective over our children but what if no one listens? What power do we have to get those that should be helping to listen to us? It is a terrifying thought. These deaths are becoming more and more frequent. Is it death by indifference? Or death by ignorance? How can a 6-year-old not be treated because she was uncooperative? What 6-year-old on this planet is happy to be poked and prodded by strangers when poorly?
We need to keep talking about Autism. We need to educate teachers, doctors, and nurses. We need to normalize it. It is not a taboo subject, 1 in every 100 people in the UK is diagnosed as autistic. It is not uncommon. Why aren’t we teaching about it in schools?
I work in an office (pre Covid) and often have to have to catch up on new systems and safety procedures so why aren’t medical professionals being made to educate themselves on developments in diagnosis’?
As a parent of a child with special needs I often feel judged, judged by those who are in positions to support us or judged by those who don’t understand. It shouldn’t matter, but it does. Peoples opinions still effect all of us whether we are willing to admit it or not.
I dread people coming to my house, not just because of the Covid situation but because it makes me uncomfortable. We recently had an appointment with ‘the sleep team’ and a woman called Rachel came to our house. I’m immediately on edge because she is coming in my house, what if she sits there judging us? Don’t get me wrong, my house isn’t unclean but it is most definitely lived in and you are bound to step/sit on some abandoned snack or cockle over on half an egg shaped toy but its home, its where we make memories and I personally wouldn’t want it any other way.
She comes in wearing her full PPE gear and sits on the floor. Who does that in a house with both a cat and a dog? Even I don’t sit on the floor… it looks clean and gets hoovered all the time, but you always end up with a nice coating of ginger fur anyway.
I’m not sure if I have mellowed as time has gone by but I really liked this woman who is now in a list of recent professionals who have managed to put me at ease in a very short space of time. Maybe I’m just not as neurotic as I once was.
I have done so much research about sleep regression, sleep avoidance, ways to assist in sleep, the works to be honest, it started maybe a year ago when William decided he no longer wanted to seep like a log. A little context is maybe needed here… William has always slept through the night, right from the moment we brought him home from the hospital. We used to give him a little poke to make sure he was ok because he was so still. Oh, how I used to brag about the fact he was an amazing sleeper! This is my payment for being a smug bitch.
Rachel spoke to us about Williams routines, his behaviours at bedtime and through the night and asked us about steps we have put in place to try and ensure he gets some sleep.
William struggles to get to sleep, he struggles to stay asleep and seems to only need between four and five hours a night
There is a huge list of things we have tried and failed. Hours of research and expensive bits and pieces to help him settle but to no avail.
What really made my day is that Rachel said we were doing everything right ☺ us… who feel so inadequate at times doing it right. She said we had a good team between the two of and seem to communicate well and work together… I almost fell over, but it did really make my day.
The only downside to this is that she couldn’t offer any further advice however she is going to speak to the KIDS charity and see if they can offer anything further. This to me indicates that medication will be the next step and I don’t think I want that for my child, but we will have to cross that bridge when we get to it.
She is coming back on the 8th so I will keep you updated with any developments
Today I want to talk about help and the places in which you expect it to come from but more importantly the places you would never expect. Today I want to talk about Essity and the amazing and generous help they have offered us but first I was to give you all a little background on what has led to today. This is by no means a sponsored post as Essity has kept all communication private but I feel they need to be mentioned as people find it so easy to brand big companies as heartless and greedy but today Essity has really helped put us out of the gap we found ourselves in in regards to the nappy service.
We have spoken previously about when it comes to help from the NHS, the council and other sources we often find ourselves in a gap; a void that you fall into when you miss the criteria that warrants help. It can be so frustrating that in our case Williams age prevents him from getting the help he needs or the help we need to keep him clean, healthy, and safe.
We have cried at receptionists, doctors, health visitors and many other health professionals because we have been denied access to the services we so desperately need.
There is a quote that occasionally does the rounds on the support group that we are part of, and it always really resonates with me.
A SPECIAL NEEDS PARENT FALLS DOWN A HOLE
Family/friend:“What hole?” Boss:“Oh that’s a shame. You can take the day off” Doctor:“Can you keep a diary of your experience in the hole?” CAMHS:“We will assess the size of the hole however it may take over 2 and a half years” Local Authority:“Sorry we don’t have enough money for a ladder” Charity:“Here is a form to fill in. This will get you on a waiting list for a ladder” Another special needs parent:“I’m here! I’m coming down there with you, I’ve been down here before and we can share my ladder”
We have had so much support from parents who have been in similar situations to our that it truly is inspirational. I would love to be able to help parents that start their own journeys which is one of the reasons we started our blog. Someone recently reached out to us on our twitter page to see if we could help their friend and I felt like we were part of something bigger. A group of parents who are bound together by being let down by a system that is set up to fail us. To make us feel like we can not help our children ourselves and need the extra support, its dangled in front of us like a carrot only to be pulled that little further away each time.
I just want to give you a little background information on Essity as I had to do a little research before writing this because I had never heard of them before. Essity is a leading global health company that originates in Sweden that develops, produces, and sells personal care items such as baby care, feminine care, incontinence products and medical solutions, plus so much more.
Essity´s vision is according to their website that they are dedicated to improving well-being through leading hygiene and health solutions.
They produce household names like Tena, Libero, Cushelle, Plenty, Bodyform, Cultimed and so many more across the globe As I have admitted I had never heard of Essity but I had heard of their brands, brands most families have in their cupboards including ourselves.
On the homepage on their website there is a quote ‘You want to make a difference every day. So do we.’ and usually when I see that kind of thing on a corporate website I would roll my eyes but they really mean it.
Today they have made the extraordinary offer to provide us with some suitable nappies for William until he is eligible for the nappy service from the NHS. This huge company that doesn’t know us from Adam has seen that we are in hole and thrown down that ladder that usually only other special needs parents carry around with them. This massive Swedish company has reached out to a little family from Hull and saved us. I know that may seem extreme as it is just nappies to most people but to us it a necessity and one that we may have been unable to source once William grows out of the standard sizes which will happen any day now and long before he turns four in 6 months.
There is really nothing we can do to repay such an amazing gesture other than to say thank you from all of us. Not just me, David and William but from our full family, from the staff at his nursery, our health visitor and every other professional to whom I have cried to about the unjust 4 year old rule.
Its a Monday and when I was office based it used to be my favourite day of the week but not anymore, today feel like the most Monday-ist Monday ever! In the words of that Geldof prick and school shooter Brenda Spencer… ‘I don’t like Mondays.’
Today me got to meet our new health visitor; Louise. we all know how much we rated Sarah so she does have a lot to live up to. Louise has been the health visitor for our area for 15 years which is a long time for a health visitor to remain in the profession.
She turned up in full PPE as you would expect in todays current climate, Mask, goggles, gloves and full length plastic apron. Brilliant first impression… the neighbours must think we either stink or are getting fumigated 🦨🤣
She introduced herself and immediately jumped into questions about William, I must say the sceptic in me immediately though she hadn’t read his notes but she was also referring to him and wanted a thorough picture for herself of his capabilities and behaviours.
She confirmed she will be attending next Mondays meeting about his EHCP just like Sarah used to despite not receiving the official invitation.
Before I could even ask her about the Nappy Service she told me she had looked into our request and there was no leeway with him being under four, again this impressed me that she had looked into things that we had hit brick walls with without having to be asked. This one was on my little things I had written down during the months I was unable to speak with Sarah.
She has decided to put us through to a sleep specialist to help us hopefully get William to sleep easier and keep him asleep, this will involve lots of assessments and advice before potentially leading to medication such as melatonin. Melatonin will help most kids fall to sleep but not all… The problem is some parents believe it will help a child who is procrastinating going to bed, stop a child waking up early or having nightmares but that isn’t the case. Melatonin is usually a natural hormone that our brains release in order to help us fall to sleep. Melatonin supplements are available easily online but they are NOT regulated and may do more harm than good. If you are considering Melatonin please ensure you speak to a professional before buying something that you cant be 100% sure of what’s in it. There are concerns that because melatonin is a hormone that it may effect your child’s development when they hit puberty and it is something we will need to consider deeply if we reach that stage.
I asked her to refer us to Wheelchair services so we can get a specialised buggy but she wasn’t sure if she was able to do so. she said she would be in touch about it and… within 2 hours of her leaving our house she was on the phone advising us of who we need to speak to as only two organisations can make that referral, Occupational health and Physiotherapy but William doesn’t need any of these 😕 Its not that he can’t walk. Far from it. Its when he does walk he will drop to the floor in a floppy state no matter where he is including roads, its the fact he has no danger awareness and a buggy at times he goes floppy or has a meltdown would prevent him from getting hurt. I’ve lost count of the amount of time Dave has had to stop cars because or child is laid in the street. 🚗 we have spoken to our G.P surgery and have a telephone consultation booked next week for the doctor to decide if its appropriate for him to refer us 🙄
I’m not sure if we mentioned the questionnaires that are sent out prior to a child’s development check up but they have always been brutal to us. They focus on what children should be doing for their age group and as we are all aware William isn’t at his age group so it was a lot of negatives for us. These are called the Ages & stages questionnaires and unless I am mistaken are to identify children who may have developmental disabilities. He will now be assessed based on the Nelson scale which focuses on the age he is at for each area rather than where he should be for his actual age. I think this will be much easier to help us understand the next steps in his development. We see little improvements and new achievements but we find that the standard ages and stages just doesn’t celebrate or include those and will continue to score zeros despite developing slowly at his own pace.
On the plus she has weighed and measured him and he is in the 25th percentile which is where he has been all along. This made me feel so much better about his eating habits as I do worry he may be underweight but apparently he is perfectly healthy… which is always good to hear.
I think because Sarah was all we had know for 4 years we held her on a pedestal and it was unfair to presume Louise would be inferior to her. She has already made a brilliant first impression but I guess I’m just skeptical due to the amount of agencies who have failed to uphold their promises but Louise seems really promising and honest and I guess that’s all we can ask for. She will only be with us until William starts school in a years time in which the school support will take over… if we get in but thats a whole other worry for another day.
I wanted to share with you some details from two articles published by The Independent and Hull Live about Ryan Addison.
Being from Hull myself the story automatically caught my attention for some pretty disturbing reasons. Firstly the article on Hull Live hold the title ‘Innocent Hull man locked up with criminals for years because of his autism’ When Ryan was 17 years old, verging on adulthood he showed signs of concerning behaviour which cumulated in him trying to take his own life. He was then voluntarily detained in hospital for help with his behaviour. With him being 17 at the time he would not have been able to give permission for this himself so the mental health professionals must have asked him mother and father for consent on his behalf.
Ryan’s mom was pleased and thought after some treatment she would get her boy back home, a few weeks maximum she thought… That was 14 years ago.
Sadly Ryan was wrong diagnosed as suffering with Schizophrenia which was only re-evaluated 12 years after the initial diagnosis. He did not have Schizophrenia but was actually autistic. For those 12 years with an incorrect diagnosis Ryan was treated with drugs for something he did not have. Ryan has been so heavily medicated he lost 14 teeth and had to be fitted with denture which has since been misplaced.
After 10 years Ryan was moved to the Humber Centre for Forensic Psychiatry which according to the NHS UK site provides medium and low security for patients suffering from mental disorders, learning disabilities and personality disorders; offering assessment, treatment and rehabilitation.
Within 4 months of arriving at The Humber Centre Ryan was put into long-term segregation and between October 2017 and February 2018 he was not permitted to have any contact with the outside world after showing aggressive behaviour and violence. The department of health state in their section of the right to have visitors when detained under the mental health act the below…
You can have visitors but different wards have different rules about times etc.
Your visitors can be very important in giving you support.
The Code of Practice also states
All patients have the right to maintain contact with, and be visited by, anyone they wish to see, subject to carefully limited exceptions. The value of visits in maintaining links with family and community networks is recognised as a key element in a patient’s care, treatment and recovery. Article 8 of the European Convention on Human Rights (ECHR) protects the right to a family life. In particular, every effort should be made to support parents to support their children. Patients should be able to see all their visitors in private, including in their own bedroom if the patient wishes.
Visits should be encouraged and made as comfortable and easy as possible for the visitor and the patient. Reasonable and flexible visiting times, access to refreshments and pleasant surroundings will all contribute to a sense of respect for the patient’s entitlement to be visited
In addition to visits, every effort should be made to assist the patient, where appropriate, to maintain contact with relatives, friends and advocates in other ways. It is good practice for patients to be placed in a hospital as close as reasonably practicable to their families, and patients should have readily accessible and appropriate daytime telephone and internet facilities (see chapter 8). Where a patient is placed out of area it is good practice to consider the needs of family and carers who have to travel in order to visit
There are circumstances where hospital managers may restrict visitors, refuse them entry or require them to leave. Managers should have a policy on the circumstances in which visits to patients may be restricted, to which both clinical staff and patients may refer, which should be clearly displayed on the ward.
There are two principal grounds which could justify the restriction or exclusion of a visitor: clinical grounds and security grounds.
The decision to prohibit a visit by any person whom the patient has requested to visit or has agreed to see should be regarded as a serious interference with the rights of the patient and a blanket restriction may be considered a breach of their article 8 rights. There may be circumstances when a visitor has to be excluded, but these instances should be exceptional and any decision should be taken only after other means to deal with the problem have been considered and (where appropriate) tried. Any such decision should be fully documented and include the reasons for the exclusion, and it should be made available for independent scrutiny by the CQC or service commissioner, and explained to the patient. Hospital managers should review the effect on the patient of any decision to restrict visits. These policies should be risk-based and not impose blanket restrictions, eg no visitors for the first four weeks after admission
From time to time, the patient’s responsible clinician may decide, after assessment and discussion with the multi-disciplinary team, that some visits could be detrimental to the safety or wellbeing of the patient, the visitor, other patients or staff on the ward. In these circumstances, the responsible clinician may make special arrangements for the visit, impose reasonable conditions or if necessary exclude the visitor. In any of these cases, the reasons for the restriction should be recorded and explained to the patient and the visitor, both orally and in writing (subject to the normal considerations of patient confidentiality). Wherever possible, 24-hour notice should be given of this decision.
The behaviour of a particular visitor may be disruptive, or may have been disruptive in the past, to the degree that exclusion from the hospital is necessary as a last resort. Examples of such behaviour include: • incitement to abscond • smuggling of illicit drugs or alcohol into the hospital or unit • transfer of potential weapons • unacceptable aggression, and • attempts by members of the media to gain unauthorised access.
A decision to exclude a visitor on the grounds of their behaviour should be fully documented and explained to the patient orally and in writing. Where possible and appropriate, the reason for the decision should be communicated to the person being excluded (subject to the normal considerations of patient confidentiality and any overriding security concerns).
The hospital manager has a responsibility to regularly monitor the excluded visitors list and keep all parties informed which was according the articles was not adhered to so he or she should be facing severe disciplinary action and potentially dismissal.
I want to add here that it wasn’t until 2018 that Ryan’s mom said it was clear he should not be locked up. Now I am not sure if the article is paraphrasing but misdiagnosis or not, Ryan’s behaviour was still very challenging; It took 9 staff to restrain him when he became aggressive which did result in Ryan suffering some injuries which shouldn’t have happened however if he was aggressive then there would be the need to restrain him from hurting himself or others in the facility.
It is officially stated that detaining those with autism diagnosis is not effective however figures do show that the number of those detained in facilities has more than doubled within 5 years which is a terrifying jump in numbers.
Sharon claims that she was not able to physically touch her son, take up to date photos of him or even see his room. she states she called the centre twice a day; once in a morning and once at night to see how her son was doing but in October 2019 she was unable to reach the ward despite multiple attempts. A member of staff at the facility had blocked Sharon’s number and when she dialled from her husbands phone that was blocked too. It was only then that she made an official complaint but no one would admit to blocking their calls and apparently it was untraceable due to the number of staff on duty but senior managers at the facility have given a stern warning to all staff that such behaviour is not acceptable! (apparently that needs spelling out) Thus meant that no one could be held accountable for such a heinous act and most probably still work there with vulnerable people and their families.
In a statement Humber Teaching Foundation Trust said: “We are in complete agreement with Mrs Clarke that Ryan’s current hospital placement is an inappropriate environment to meet Ryan’s needs. We are pleased that, following positive meetings with commissioners last week, together we are now taking the steps required to discharge Ryan into a community placement that will be better placed meet his needs. We understand that Ryan and his family feel that this process has taken a longer than expected, however, it is important that we find the right placement that meets Ryan’s complex needs and enables him to progress further with his recovery”
I’m a glass half empty kind of person and I do find it odd that it has taken so long for the failures around Ryan’s care to be addressed not only by his family but also the Clinical Commissioning Group and the NHS. Did Ryan just slip through the gaps? or was he forgotten about because it was more convenient for all parties?
The Government has now agreed a new 62 million pound fund to help local councils tailor bespoke packages to suit the needs of adults like Ryan however Covid-19 is more than likely to have an impact on this due to the amount council have spent during this pandemic.
His mom thinks that when he is released he will become more like the young boy she remembers and will truly blossom however that was a long time ago but I sincerely hope that is true for him. He has had a huge portion of his life taken away and although he can not get back the years he has lost I really hope he can have many fulfilled ones in the future. I will update about his release when possible.
Check out the original article from The Independent here And the Hull live article here
Its no secret that I don’t like people. Actually that’s a lie. I like plenty of people just not starngers and it takes me a long time to be comfortable around anyone.
I have often spoken about Sarah but just in case some of you aren’t sure on who I am referring to… Sarah is our amazing health visitor. She has stayed with us for about 4 years since before William had even arrived. I have always maintained that Sarah is massively overworked and unpaid and I will stick to that. She has been an absolute godsend to us throughout our journey and when we moved house she promised she would stay with us…Lets fast-forward to present day and do you a little play back play
Lets fast forward to present day, here’s a little bit of a run down
Postman checks front garden for dog (its the cat he should be more affraid of 🐈)
Thump of mail hitting the mat triggers both me and William to dash for the door… He wants to eat it and I want to read it.
Its a win/win, I get the letters and he gets the Farmfoods leaflet.
I begin to shout for Dave…
This ever so nice letter from the community health team tells me that ‘as we new to the area’ we have been allocated a new health visitor and she will be coming to see us on said date.
As you can imagine we are confused so I call the number of the letter, I didn’t really hold out much hope as I had left a few messages for Sarah with their reception and never heard back. The answer and transfer me somewhere else… I explain that I have been in the area over a year now and we were told Sarah would be staying with us. I’m crying at this point because its such a big thig for us to have her in our corner; helping me fill out forms, turning up to meetings she isn’t invited to etc. The woman then asks me if William has additional needs.
Sarah has gone… she got a new job and isn’t a health visitor any more and her caseload has been deployed to others.
Needless to say we are devastated, a little hurt we weren’t told but mainly devastated.
We are worried that we wont get the same level of support from some who doesn’t know us. That we have to build that relationship back up and we don’t have the time to do that with William hopefully attending school next year. Are we going to have to repeat the last few years and have the same conversations?
I think we were lucky to keep Sarah as long as we did and I am so grateful for that and although for us this is a massive blow I really hope that in her new role she will be very happy and appreciated for all the hard work she puts in to everything.
Louise. That’s our new health visitor who we will be meeting a in a few weeks, I really hope she reads through all Williams notes and makes us feel at ease but for now we will just have to wait and see. Although she does get points for calling us after my distressed phone call… Maybe this isn’t going to as bad as we think…
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.
Its not a word you would usually come across in day to day life. When I think of it I used to be reminded of the scene in Pearl Harbour in which the nurses have to mark the wounded men with lipstick.
For us triage is part one of a much bigger process, a process that has consumed our lives and will continue to do so until William receives a diagnosis. William’s triage appointment was today… As you can understand due to the current pandemic this appointment is not face to face but instead was done over the phone.
I’m not going to lie to you and tell you I slept well (or even at all) last night waiting for this call, the crazy irrational thoughts kept me awake… ‘what if they decide he doesn’t need to be on the waiting list and we have to start afresh in a different sector’ ‘what if they say he is the way he is because we are shit parents’ ‘What if I don’t say the right things?’
I know it’s irrational and crazy and so does Dave or at least that’s what he told me at daft o’clock this morning when I was still awake trying to ask Dr Google what they will be asking us. Not that it helped any way as we couldn’t find a list of questions anywhere ❓❓❓Not very helpful for ridiculously anxious people like me who like to be prepared for everything. This notebook (which I just had to find and get ready at for 4am to be prepared for a 10am call) has been with me to every appointment. The writing is messy and blurred from tears. Anybody but me would find it indecipherable but I take great comfort in knowing I have it and can refer to it when needed. It is like a comfort blanket and knowing I look over it to see what meetings we have had, what questions we have asked and what answers we have and have not received makes me feel like I am a better parent than I am.
The call came in literally as the clock ticked over to 10am, I was mid wee 😳 Appointments are never on time so I was sure this one would be the same. The woman was called Emma Gibson and she gave off good vibes if that makes sense. Pleasant to speak to, not too clinical and had a friendly tone to her voice.
So I made notes (shocking) in my little book about each question asked so that anyone reading this waiting for their triage appointment can have a rough guideline to take the anxiety off a little. Each lead to other questions so this will not be a comprehensive list.
When did you first notice something was wrong? Holy shit she went straight in there with the bullet to the head! 😔🔫 As many of you will know already it took a long time for us to openly admit something was wrong with our child and it wasn’t until William was after 2 that we started writing about him publicly on Facebook to share our journey. It wasn’t that we were ashamed, we were frightened, not only thing things William would struggle with but of the stigma that comes with having a learning disability.
Who is in your household?
Is Dave Williams dad? I had to kick Dave to make sure he didn’t pull his usual not funny trick of saying ‘as far as I’m aware’ or ‘Yes or the milkman’s’ Honestly these jokes are almost as old as the one were he says he’s shagging my sister 🙄
Do you both work? Who’s the main breadwinner? What does he do for a living? Insert idle chit chat here about how the current pandemic is effecting him at work.
Has there been any history of trauma or domestic violence that may have impacted William? I had just kick Dave but that doesn’t count… No of course not 😇
Is there a history of autism in our family?
Is there a history of mental health issues? I explained about my lengthy battle with postnatal depression and anxiety and the medication I had been on and for how long. I’m not ashamed of it, in fact i’m proud. Although it took me a long time to seek help, I eventually did and came out the other side. Some people don’t.
What other agencies are involved with William? We then discussed things his paediatrician had put forward; blood testing and genetics testing and our next appointment. We discussed Lisa who liaises with the nursery in regards to his education.
Are social services involved? Eh? No!
What was my pregnancy like? We discussed how high risk it was, the lengthy induction, having an assisted labour, gestational diabetes, being in hospital longer than expected.
Is William on any medication?
Did you bond with William? Yes. No. Maybe? He didn’t really bond with me? He’s indifferent.
What was he like in meeting his milestones? Insert big head joke here and not sitting up until 10 months.
What were his first words? 🤐
What does him playing look like?
Does he make eye contact? If he does can he maintain it or is it fleeting?
Does he respond to his own name?
Does he indicate hisemotions or pain with facial expressions? Let me tell you something… Justin Bonomo and Erik Seidel are amateurs compared to William when it comes to having a good poker face. I’ve let me nerd slip out again there. Justin and Erik are two of the most famous poker players in the world.
How does he behave with other kids at nursery?
Are there any children outside of nursery that he engages with?
What kind of support does he receive at nursery?
Am I OK to contact the nursery?
Does William recognise other peoples emotions?
What are Williams meltdowns like? Like a tornado ripping through my living room. Like stepping into the ring with Conor Mcgregor. Like trying to hold onto an oiled up contortionist.
What sensory issues does William suffer with?
What are the main indicators he is about to have a meltdown?
What are his eating habits like other than during meltdowns?
Does he show any signs of anxiety?
What is his sleep pattern like?
Are there any things he cant do in regards to his motor skills? Jump. Hop. Point. Wave. Clap.
What is he like with danger? or strangers? No sense of danger or recognition between familiar adults and strangers. That was it! Interrogation over.
She was happy that William had been referred to the right place and he will remain on the waiting list 🎉🎉🎉 Relief swept over me. Tears ran down my face.
What happens next?
A letter confirming this will be sent to all parties involved. A team of specialised autism nurses will be on hand during our wait to answer any questions we may have.
The wait is currently between 2 and 2 and a half years. We will not be contacted until William is at the top of the list. To put things into number which you know I enjoy, there are over 900 people in front of him in Hull alone. In order to them to bring their waiting time down they must assess a minimum of 8 people per week and I know a company called Healios have stepped in to alleviate some of the pressure but they can’t carry out all the assessments as they conduct theirs via video link and not all of those waiting would benefit from such an assessment. The actual assessment is called ADOS (Autism Diagnostic Observation Schedule) and it is currently the standardised diagnostic tool for diagnosing ASD. The ADOS process involves observations under controlled circumstances that other professionals are able to replicate. Only trained professionals can administer the ADOS diagnostic screening, but it eliminates some of the differences of opinion otherwise possible when two different experts provide a diagnosis without following the same consensus in regards to what they should be looking for. Using the one set of clear guideline minimises the margin for misdiagnosis and errors.
When it is Williams turn for his assessment he will already be finishing his first term of his second year at school 📚 That is if they continue seeing people at their current rate.
November/December 2022 – What a brilliant Christmas gift that will be for us that year 🎄🎁
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