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
As many of you will be aware we have recently been on a big family holiday for the first time in 2 years and as you can imagine things with William have changed greatly since our last vacation. I love getting together with our family but as anyone will be aware it can be stressful; throw an autistic child in the mix and it can be nuclear which meant my stress levels peaked before we had even left the house. ‘What can he cope without?’ ‘What if he smears whilst we are there?’ ‘What if he cant handle it being around so many people?’
I know it sounds a little crazy as my mum and dad were there and he loves them both so much and my dad will babysit when I was office based, my sister and niece were there and he loves his Auntie Nellen (or H to everyone else, the letter H doesn’t exist in Kingston upon Ull. ⚙Yes the cog used to be our logo 🙄) Big nanna came for the first time and we all know what an amazing bond they have and finally his Uncle Jim and lets face it unless he has to change a nappy he is amazing with him (if we ignore the fact he’s banged Williams head more times than Rick Allen has banged his drums🥁)
Here are some of my favourite pictures from the week 🥰🥰🥰
Picture 1 – We were delighted to be able to borrow a freeloader carrier which personally is amazing for parents of children with special needs to be able to safely carry them to areas you would not be able to get to with a stroller or wheelchair. Unlike a baby carrier it has a seat on an reinforced hinge which means that when your child sits on it the straps are not brutally cutting into your flesh due to the weight of your lump child. Its a big expense as they are imported from America but I would honestly say they are definitely worth it and we will eventually be looking at getting one of our own 💸💸💸 Click here to check them out
Picture 2 – We’ve discussed on previous posts about Williams refusal to walk and lack of awareness when it comes to roads. Here is a prime example. We had walked for less than 2 minutes and William collapsed in the road. He makes himself go floppy so he is impossible to grab onto and will just lay wherever he has fallen an believe me he is more slippery than a bar of soap and his limbs just slide through your hands. 🧼
Picture 3 – William love bubbles but hates bath time 🛁 so after a traumatic bath which was much needed as he decided to sit in the stream we left all the bubbles in the tub for him to lay and play in. Dave took so many photos and Big Nanna sat in a chair watching him have the time of his life and I’m so glad she got to see that as she had witnessed a meltdown at the beginning of the week which I will talk about later.
Picture 4 – Dave loves the walks up in the dales and has climbed the peaks and everything… Me; no so much. My version of exercise is walking to fridge or picking up my phone to order on just eat. 🍕 We decided to spend one of our days in our little 3 person bubble and went to explore the village. Whilst sat with his dad on the bank of a deep stream William lost a one of his Wellies over the edge and Dave had to go in and fetch it… as you can see no shits were given by William at all and he is actually calmly sat on grass which is a big improvement.
Picture 5 – Dave referred to this table as a 70’s party table due to its mirrored surface. William had his first little holiday romance… with himself. It’s like he discovered his reflection for the first time and spent a good amount of his time kissing his reflection 😘 William doesn’t quite understand what a kiss is and his version is coming at your mouth with his mouth open and there is always a risk you will get bitten but its worth it, I would take a million bites for one kiss.
Picture 6 – He loved the streams that ran though the village and we went in for splashes at every opportunity. We learnt a few things on these mini adventures. My wellies had holes in (they were about 10 years old), William loves the running water and decided to wade as far as we would let him, to the point the water was over his wellies so I wasn’t the only one with wet feet and finally that he will literally just sit anywhere including in said stream 😂 It made the short walk back to cottage much longer, wetter and colder.
William had one meltdown whilst we were away and unfortunately it was the worst we have experienced so far. He went red and started screaming and repeatedly hitting himself in the face with both his hands clenched together 😢 It hurts me to see him so distressed however I now know not to try and restrain him as it makes it much worse. Big nanna has never experienced a full meltdown and it really frightened her. I could see it in her eyes and asking me to stop him hitting himself and asking me what was wrong and to be honest I couldn’t work it out. He has been to toilet, he had eaten well and nothing he hadn’t eaten before, he had his favourite toys and Hey Duggee was on the TV. I don’t know if it was the new environment or he just wasn’t feeling himself but it really frightened her which upset me alot.
I think being told about the way someone reacts due to their additional needs is very different from seeing it first hand. Autism in a spectrum which is so vast and complicated it is difficult for people to understand, even those who are close to someone with ASD don’t fully understand the possibilities or the limitiations and it can make explaining them exhausting 🥱
The journey home was uneventful as you can see from the above picture the journey home was uneventful, either that or they just didn’t think much to mine and H’s music choices 🎶
William missed his friends back home and Rusty which was evident because as soon as he saw each of them he was so happy. He practically ran straight to our next door neighbours for cuddles, my pets and child are all starting to think they live there 😂 but in all seriousness I actually love it. He has an amazing bond with the full family and I trust the girls to take him to park and be safe with him and it takes alot for me let anyone do that. He was sat on the roundabout in park and quietly ate his packed lunch as it went round when some older kids (secondary school) asked one of the girls to make him move and she told them no, he has problems and he’s happy where he is and they just left. She has more balls than I think I would have done.
One of our other neighbours got back from their holidays today and as you can see William missed them that much he sat in their car and made himself comfortable. GTA eat your heart out 🚗
In the words of Akon ‘I am so Lonely’ or in words of puppet Kim Jong Il ‘I’m So RonerySo ronery. So ronery and sadry arone’
Having a baby is very misleading; when the baby is born everyone wants to know you. they visit, bring gifts and make promises they don’t intend to keep. As your baby gets older people start to fade away and are only occasionally spotted at birthdays or christmas time. People stop asking you if you want to meet up for a coffee or lunch because you would have to bring the baby or because you have said no a few times due to breastfeeding or lack of childcare.
Your circle continuously gets smaller as your child gets bigger.
If your child has special needs this circle practically becomes a dot, a little bit like a reversed ripple.
I’m not sure why this happens but slowly even the people who had previously part of your lives now even fail to ask about your child on the rare occasions they speak to you. I’m not sure if its because they don’t know how to react when you say ‘Not good…’ or because they are scared the will say the wrong thing like referring to a meltdown as a tantrum or saying things like how all children do that and will grow out of it etc. I would accept things like that as I would happily share Williams story and experiences with everyone and educate people about ASD, GDD & SPD so that those parents that come after me have a slightly larger dot.
It’s a very lonely life as a parent of a special needs child. It becomes harder to spend time with your partner and you begin to realise why separation rates are higher for parents in our situation. Its hard to maintain that spark especially when you both work opposite shifts for childcare reasons and it can be near on impossible to get a sitter (not even mentioning COVID) due to William’s behavior which can be challenging to say the least.
Exhibit A. That isn’t chocolate! 🤮
I think its sad. Actually no, that’s isn’t right. I think it’s disappointing. I know it’s disappointing that we lose what we thought would be our forever circle. People who were strangers a year or two ago became those we confide in not because we upgraded or chose to leave people behind but because they understand that aching pit of despair we often feel.
I know when William goes to school we will meet parent in situations similar to ourselves and extend our circle. I’m not saying that we will bond with all his classmates parents but even one or two would be a bonus.
As always I’m not sure what my motivation was for this post but wanted other parents to know that it’s not just them and we are here for you to be part of your circles if you need us 😘