Posted in Brief updates

It will always be me

It is a strange feeling to know that it will always be me who will get up to soothe William in the night, always me that will get to kiss him goodnight and always me who will be bitten and hit during meltdowns. I never imagined I would have to try and coparent with anyone who wasn’t my spouse and it’s hard to have to stay in such close contact with someone who has hurt you so badly but it isn’t about me, its about William and he has and always will come first.

That being said I am trying hard to keep my own mental health a priority too, I have made it no secret that the last time I had a lot of changes in my life I had a breakdown and went to a dark and scary place but I came through it with a lot of help but only once I able to admit my feelings. I am very lucky to have an amazing support network who I can be open and honest with about my feelings. I can cry, shout and be irrational without being judged and I am so grateful for that.

There are many things that I am so thankful for right now. After weeks of practising William has finally mastered his first Makaton sign… I don’t think it will surprise anyone when I tell you it is for food. 🥗 that boy loves his grub! I am going to slowly introduce more signs and have invested in the Makaton core vocabulary stages 1-8 book, I bought this direct from the Makaton charity so that I know the money is going to the right place and would recommend anyone to do the same. I will keep you posted on any further developments when it arrives. Check out the video here.


William also got his first grazed knee, he was outside playing and fell which shouldn’t be a good thing but… it was the first time he put he hands out to stop his fall. It was not just a fall because he lost balance, he fell because he was excited and trying to run. He reached out to me for comfort and as I held him, he stopped crying. That wasn’t usually something I could do as he always sought his dad for comfort.


We are missing Big Nan loads 😥 Sundays aren’t really Sundays with out seeing her or having her Sunday dinners 🤤 I worry that when national lockdown ends we will go straight into localized restrictions. I know she is missing us just as much. When we call her and she asks William for a kiss, he starts kissing the phone. He does not do this for anyone else. Their bond is amazing despite spending 113 days apart in the last lockdown, not that I counted 😳

We have had many sleepless nights recently whether its because William is still adjusting to his new routine or because the poor little guy always seems to be poorly, he manages to pick up a cold more often than some people change their underwear. I swear that boy has had a constant runny nose since he was two years old. Then there are his bowel problems which means he either can’t go to toilet or that when he does they are massive explosions of nastiness… But with the help of lots of coffee and cuddles we have survived them.

Before I sign off I want to tell you about one of my solo fails recently and I apologise if I have told this story in a previous post…
William had a huge explosion during our first week alone, I’m not going to lie for a few seconds I freaked out. We were in the living room, so I stripped him off and made our way to the bathroom (which is downstairs) through the kitchen. His hands were covered in poop and I managed to prevent him touching anything except the bathroom door. Swiftly plopped him into the bathtub and hosed him down with shower, William hates bath time but seemed soothed under the stream of water and as there was no risk of drowning I left him sat in the empty bath running his hands under the shower head… My plan was to disinfect the door which was easily done and then quickly grab his dirty clothes and nappy so we could go straight back into the living room to continue whatever it was we were doing (most likely watching Little Baby Bum on Netflix📺) I’m not going to lie, I felt pretty chuffed with myself but as I pushed open the living room door that soon changed… there was poop everywhere!!! The dog had destroyed the nappy and my clean living room now resembled a port-a-loo at a festival 🤮 needless to say the experience was most definitely a learning curve and since then the dog is not left unsupervised with shitty nappies.

Oh and check out this picture, my DNA runs strong in this one…

The brows on us two 🤣

As always much love 😘, M.x

Posted in Autism In The News

Another void in the system – Not special needs enough?

One of my biggest fears is about William and getting into the right school for him and applications are getting closer and closer so it is a big source of stress during an already stressful time for us.

I read an article recently about a little local boy who was deemed ‘not special needs enough’ for a specialised school and ‘too special needs’ for a mainstream schools who can not accommodate his SEN requirements, leaving him without a place.

The little boy in question in question has a mental age not much older than Williams, is non verbal, is still in nappies and is currently awaiting his autism assessment. On paper a very similar situation to Williams, so as you can imagine this read was my equivalent of reading a Stephen King or Dean Koontz book before bed. 😱

I was advised to reach out to mainstream schools in our area to see what SEN provisions they have should William not be allocated a place within a special school, I have made no secret about the fact there is a specific special school I feel will suit his needs but if that is not possible I would happily begrudgingly accept an alternative but I know that a mainstream school would not be able to meet his needs in the long run, I have reached out to eight different schools in my area, only one which would be easy to get to but I reached out to them all.
* One have said they can not accommodate him despite having a responsibility to adjust their settings to do so.
* One have stated they need his EHCP before commenting, unfortunately due to covid the process of this was delayed and we may not have this in time for applications although I am aware that it is 90 pages long 📜
* One wanted to invite me in for a look around and a conversation but did state after early years they aren’t big enough to accommodate his needs.
* One said they would call me and haven’t
* The remaining four have yet to respond despite a secondary email.

Before I was a single parent, myself and William’s dad had discussed how we don’t think a mainstream school would be a good fit for William and the possibility of keeping him at home until we could secure a place which would meet all his needs however now I am not sure how I would be able to try and home school him and work all whilst fighting for his right to education in a safe and secure environment.
It never crossed my mind that I would need a place at a mainstream school and now I am worried that I may not get one which is terrifying.

All signs and indications point to the fact William has an exceptionally good chance at obtaining a place at his school of choice or at least an suitable alternative but what if he doesn’t? The schools I am reaching out to aren’t exactly helping me make a decision but what if that decision is taken out of my hands? What if no school can help him?

Its a difficult thought to process especially after reading the article (Click here to read it), as with anything about special needs it is a waiting game, waiting for EHCP, waiting for an assessment but as each day passes mainstream allocations get closer and it feels so overwhelming. I guess waiting is the only thing I can do until our next meeting in December with the councils SEN team.

Hulls SEND strategy is dated from 2016 to 2020 and it starts with their vision
Our vision for children with special educational
needs and disabilities is the same as for all children
and young people – that they achieve well in their
early years, at school and in college, and lead
happy and fulfilled lives
.
They talk about their responsibility to commission and provide services for children but there are so many cases where this hasn’t happened that I feel like I am reading a piece of fiction but again only time will tell…

Much love, M. x 😘

Posted in Brief updates, Emotions

Single parent

Did you know there are around 1.8 million single parents in the UK – they make up nearly a quarter of families with dependent children. 1.62 million of these are women. I never really thought about this until it happened to us.

I could lie to you all and say we have had an easy ride of things recently but I think you probably know that’s not the case. This is a big adjustment period for me and more importantly for William.

My main focus is to continue to ensure William has a good solid routine in place which is pivotal to him. He is keeping me extremely busy as he seems to be struggling with this huge change in his life, bed times and mornings are now only ever with me and I don’t think he enjoys them very much. He fights and kicks me when I try to change his clothes, runs away from me and screams but we get it done.

We take the dog for nice little walks (well he walks us🐕‍🦺) which William seems to really enjoy even though he is in the comfort of his stroller and flat of refuses to do any walking. I’m tempted to stay at home and just tie the dog to the stroller and let him pull it arpund the street like a sled 🛷 but I think that would constitute as child cruelty or animal cruelty. Maybe neglect? So I best continue to go with them 🤣

We are eating healthier (as healthy as a boy thats half chicken nugget will eat anyway🍗) and trying to turn this into a positive thing for our lives and look to our future.

We’ve had meltdowns and shutdowns (from both of us😭) but we’ve come through it and these are getting less and less frequent on both parts. He is slowly adjusting to his new routine and I can now see the light at the end of the tunnel but its hard. Harder than it ever was before but we are doing ok. In fact we are more than ok, we aren’t just surviving like I thought we would. We are actually living thanks to our amazing support network of family and friends.

We can not thank everyone enough for reaching out to us, the doorstep visits, dropping off shopping and just being there for us. It means more than you all could ever know 😘 Much love M x

Posted in autism and covid19, Emotions

Am I overreacting?

I want to talk about why we now own these two DVDs

I used to love DVDs, movies are a big passion of mine and had over two thousand DVDs not including TV box sets or Christmas films. About two years ago we realised like many other people that they were just gathering dust because we had become more reliant on streaming services which made me a little sad as I had been collecting them since I was about thirteen and finally decided to get rid of my VHS. When I met Dave he too shared my passion for movies and our collection just grew. I remember the last DVD I bought was for Dave for Christmas 2014 and it was The Guardians of The Galaxy. We gave almost every single DVD away, Big Nan got first dibs of the chick flicks, I kept the Disney classic in a DVD folder and the rest went to our close friends.

We don’t even own a DVD player but yet yesterday Dave bought these two DVDs 😕

Yesterday was Williams 6 month eye check at the Eye Hospital and as I was working and only one parent is allowed to attend due to Covid-19 restrictions Dave went on his own… I’m getting better at trusting anyone other than myself to ask the right questions now… sometimes. They always struggle to do his eye check as he isn’t fully cooperative, They have told us at the last two checks that everything seems fine but they can’t be 100% sure because he won’t let them check as thoroughly as they would like. Because of this we keep going back, waiting for the day they will discharge us as a patient. William didn’t get to see his Auntie H either as she was super busy.

As a treat afterwards for being a good boy Dave took William into the town centre to get him a treat for his dinner. This usually results in copious amounts of cheese straws and sausage rolls from Cooplands. The boy is an absolute savory fiend.

Anyone that knows Dave knows that he loves his Playstation. Not as much as he love William or Rusty but I think it’s on par with me 😂😂😂 so he popped into CEX in Prospect Centre to look at some games. This is somewhere that when at the height of my DVD addiction I used to frequent on my lunch break when I worked in the offices above. 💿 The staff have always been pleasant, helpful and friendly.
William is a sneaky bugger when he wants to be, we’ve been in shops when he has grabbed something random off the shelves because it caught his eye and I’ve nearly left with it or when he has started trying to eat a wrapped chocolate bar and ‘ve had to pay for it knowing full well he doesn’t like turkish delight (It’s a good job I do… keep up the bright wrappers Frys 😉)

Dave got shouted at by a woman in CEX.
I will repeat that… shouted at by a woman in CEX.
That’s CEX the most relaxed shop in the world.
‘You’re not allowed to touch!’
‘He can’t touch that!’
‘Covid!’
Now I’m not sure if I am overreacting here but William sits in what is in my opinion clearly a disability stroller. There is a hidden disability lanyard hanging from one handle and a large disc on the other. I’m really angry that they chose to address this by shouting and for anyone but Dave, this could have caused upset or major embarrassment, I speak from experience when I say that on some days life as a special needs parent is one comment, look or cough away from a breakdown. She at this point had no idea if he was planning on purchasing the items or not.
I understand that in the current climate you have to be so careful but these DVDs are wrapped in plastic and could easily be wiped down, We carry antibacterial wipes in our change bag and could have wiped them down ourselves.
I’m also not saying that because William has additional needs that he doesn’t need to follow the rules but there should be at least some modicum of understanding. or a better way of going about it.
Dave bought the DVDs and basically told the woman that was his intention all along despite not knowing William had hold of them as a way of saying fuck you. Mr however I think I would have shamed her, told her loudly all about Williams needs and difficulties and made her feel like an idiot, offered to wipe them down or to buy them if that wasn’t feasible. She could have gone about it in a much better way; she could have walked over and explained to Dave who would have apologised and explained but she didn’t… she chose to berate Dave across the shop floor.
I’m not sure if i’m being oversensitive but I do feel in the year 2020 people should be more understanding before jumping to conclusions. William wasn’t running amok in the store he was confined to his stroller clearly displaying he had additional needs.
If you aren’t allowed to touch the DVDs or Games how are you supposed to read the back to ensure they are suitable? They’ve all been wrapped in the clear plastic, for what reason?

My current writing situation 🥰

On a positive note…
Last night William had just had a bum change (not the positive bit 🤮) and he reached his arms out to me like he wanted to be carried and when I reached down he placed his arm around my neck and put his head on my shoulder. He wanted to give me a cuddle 🥰 He has never actively cuddled before. He will climb up next to you and snuggle in but he initiated a cuddle for the first time. 🥲 I cried and ruined the moment because he then pinched my glasses and ran away laughing but it was so worth it!

Posted in Reference

I See You

I Have seen this poem shared on Facebook several times throughout the last year but it didn’t resonate as much as it does today. You may remember the ‘Welcome to Holland’ poem I shared which in the beginning really touched me. Check that out here.

Unfortunately I haven’t been able to trace its origin but whomever wrote it, Thank you!
I needed to read something like this right now and am so grateful for the Mom who shared it again 😘

I see you…

I see you taking your kid to therapy while your friends take their kids to football or ballet.

I see you sneak out of the conversation when all your friends boast about achievements and exam notes.

I see you juggle work, events and meetings.

I see you sitting on the computer for hours investigating what your child needs.

I see you make a face when people complain about what looks like nonsense.

I see you disappear little by little but you keep going beyond for your family.

I see you pull strength from weakness with a force you didn’t even dream you had.

I see you showing respect for teachers, therapists and medical professionals who help your child and help you.

Watching you wake up early in the morning to do it all again after another chaotic night.

I see you when you’re on the edge of the precipice struggling to live.

I know you feel invisible, like no one notices.
But I want you to know that I see you.

I see you push forward always. I see you choose to do everything you can to give your child the best care at home, school, therapy and the doctors.
What you do matters. It’s worth the struggle.

On those days when you wonder if you can make it one more minute, I want you to know I see you.

I want you to know that you are beautiful.
I want you to know it’s worth it. I want you to know that you are not alone. I want you to know that love is the most important thing, and that you are the best at it.

And in those days when you see an improvement, those moments when hard work has its reward, and you can taste success, I’ll see you then too.
And I’m proud of you.

Whatever day today is …
You’re doing it right.

And I see you. ❤

Posted in Appointments, autism and covid19

The Dream Team

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

Much love, The Buckleys 😘

Posted in Thank You

In a Gap… Pt2, The Ladder

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.

Thank you!!

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.

Thank You! ❤

Posted in Appointments, autism and covid19

PCP Meeting… Covid-19 edition. Pt2

First thing is first… Today is my birthday, I am officially 21 31. I don’t usually take the day off for my birthday however we had another PCP meeting so I thought Why not?
I am currently sat in my front garden on my old sofa in the sunshine (yes we are those neighbours but they are getting collected this week so its not that bad)

As you can see William has already claimed the best seat in the house.

The meeting attendees were myself & David, Jenny who is the who is part of the SLD outreach team for tweendykes, louise; our new health visitor, Lisa the early yars SENCO & Courtney who is acting manager at our nursery.

Just like the last PCP meeting this was to discuss and review Williams support plan to sed away for his EHCP. This will be finalised within a week for us to sign and agree ready to be sent off.

What we did find out is the next steps which is interesting….

  • It will first go to moderators who will asses the plan for 6 weeks(Who can decline it 😣)
  • Then it will be passed to educational psychologists who will carry out further assessments and potentially add to the plan
  • Between weeks 14-16 it will go back to the moderators
  • Then we will be sent a draft EHCP which we will have for 2 weeks to check and request any changes. At this point we can name a school.
    This will be banded at *Intensive *Severe *High or *Support
  • Then finally it will go back to the moderators who put all children wanting a place at a special school onto a big list and allocate places based on need and what they feel is the best fit for each child and their requirements. We should find out by the end of January 2021, which isn’t that far away when you think about it.

William isn’t automatically guaranteed to be entitled to a place in a special school so Lisa has advised us to look into the facilities the local mainstream schools have available in our area to have in mind as a back up so we will be reaching out to those shortly and will keep you posted about our findings. This for us would be worst case scenario as we know based on his GDD that a mainstream school is not the right environment for him to be able to continue to grow and learn so hopefully it wont come to that.

We have a TAF meeting due end of November/December to look at Williams funding in which we will also discuss the progress of the ECHP.

Anyway I’m off to eat copious amounts of cake and re-watch Harry Potter for the millionth time, you cant beat a good birthday tradition 🎂

Much Love, The Buckleys 😘

Posted in Appointments

Hello

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.

As always, much love from The Buckley’s 😘 xxx

Posted in Autism In The News

Imprisoned for having autism?

Meet Ryan Addison

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