Posted in Autism In The News

Death by ignorance?

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’?

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 Thank You

Happy 1st Birthday!

It’s our first birthday here at Ourjourneyontothespectrum.com and what a year it has been!

We have reached 40 countries! 40!!! so I love a good bit of Maths, If I were to travel to every country in which I have been read I would be in the air for 12 days, 17 hours and 30 mins. 🛫🌍🛬

Our top 10 countries to be read in are as follows (How has this even happened😲)
* United Kingdom
* United States
* China
* Australia
* Germany
* Malta
* Canada
* France
* Philippines
* Ukraine

There has been 60 blog posts, 3 social media pages, lots of tears and even more support.

Thank you to everyone who has read, shared or reached out. You have no idea how much it means to us.

All our love😘, M & W xx

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 Brief updates

Being social

Back in May we decided to open up our lives even further by branching out onto several social media platforms to reach a broader audience and share smaller updates.

Please click on any of the logos to see our pages and if you like what you see please Like, follow and share.

Find us on Twitter by clicking the logo 🙂
This one for Facebook 🙂
And finally… This one for Instagram 🙂

Much love, the Buckley’s 😘

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