Posted in Brief updates

School allocations

I don’t even know where to start! I don’t even know where to begin this post other than saying everything is fucked!

Yesterday was the legal deadline for allocations for special school, I had waited for what felt like an eternity already, the night before I barely slept and for the full day I felt sick and emotional… I chased them at 2pm to be told my caseworker would be calling me back once the allocations were ready. By 4:30 I was beside myself and asked Williams dad to chase as I didn’t want to keep pestering them (always a nice person and doesn’t get me anywhere!)
Shocking horror! Our caseworker is on annual leave! Who the fuck takes annual leave at such a pivotal time in their office… Mark does! That’s who!

5:30 roles around and Elaine calls me….

William wasn’t on the list of allocations!

What? That cant be right… we were assured he was on the list. Elaine explains that as he doesn’t have an EHCP in place he would never have been on the list but we were told it didn’t matter. I pushed for months to get the process started earlier but due to Covid was told it wasn’t possible. I questioned if it would be an issue to be told it would not… ALL FUCKING LIES!

To say I wasn’t angry and devastated last night would be a huge understatement; I cried uncontrollably for about 3 hours, ranted at Williams dad, my mom and friends and smashed up some old furniture before taking the dog on what I can only describe as a walk in which I felt like I needed to punish the pavement. I needed to get out the feelings of despair so that I could face today as super mom because yesterday I felt exhausted… I felt too tired of all this hard work to get shit on, too tired of fighting to get what is best (but then I have always been a melodramatic kind of girl 🤣

I had to wait until today to speak to our senco; Lisa. She found out yesterday that William wasn’t discussed at applications and apparently had a meeting with her line manager and the head of the Hull SEND team Caroline Scott to discuss Williams options. It would have been fucking amazing if they could have called me first so I didn’t spend a full day waiting on something that wasn’t even going to happen!

His EHCP will be confirmed 3rd of March and there is an exceptionally slim chance they may allocate him a special school during that process but I am not holding my breath as I don’t think I believe a word of it anymore.

I have a meeting on 4th March to discuss this other meeting 🙄 and it looks like our options will be the following…


* Keep him in nursery until the term after he turns five – although he gets funding for nursery it still costs me a lot of money each month for his 2 days and paying full costs for 3 additional days is financially out of the question.

* Home school – we both work which would make this difficult but not impossible however it is the interaction he will miss out on which will not help him develop his communication skills.

* Mainstream with a watertight EHCP – I never wanted mainstream as the environment isn’t right for William and his mental health but this may be our only option until special school allocations next year. I would be able to name a set school on his EHCP and I have done research however I just don’t know if this is best.

I will keep you posted on any further developments.

Much love, M xx

Posted in autism and covid19

Lockdown 3.0

It’s a strange time for everyone at the moment, no one wanted another national lockdown, but it was inevitable, and I do believe it’s for the best. I thought that after the new year I could get a little bit of my life back and can start having one but that will have to wait.

The problem with being alone is it gives you time to think and over analyse things such as school!! All the applications are in, the EHCP is in process and now I can only sit and wait and that is the bit I can’t cope with. The decision on special schools is usually made by the end of January so I should hear something no later than the middle of February but I’m now worried that they may be running behind on it because of Covid and I don’t think I can take it; the wait is already driving me crazy. If I go for worst case scenario which is middle of February, then its 35 days to wait. 35 days of freaking out about if he is going to get a place he so desperately needs and if he doesn’t, it’s even further away until the middle of April for mainstream allocations. I want to be optimistic, his EHCP is 90 pages long, his issues are profound and complex, and all parties involved have agreed it would be the best place for him but what if it just doesn’t happen? I have a whole new scenario to stress about. For someone who has lists about lists its really difficult to be able to plan for events you have no control over.

That’s exactly how I feel kid…

On a positive note, I have finished my level 2 in autism understanding and am awaiting my tutor to confirm if she passes the second module. I do feel confident about it to be honest and really enjoyed doing it, once my pass certificate arrives, I think I may do more, I have already scoped out two further courses; level 2 in challenging behaviour and a level 2 in learning difficulties, I think they will both come in handy for when I pick up some volunteer work when William starts school.

William is doing really well in his development; his eye contact has improved drastically, and he is getting very good at object exchange to show me what he wants. He even takes his own pots into the kitchen and only throw them about 10% of the time 😂 I know it doesn’t seem like a lot but to me it is amazing. To me a few seconds of eye contact can bring tears to my eyes.


We did have a few bad nights recently as William had some bowel issues 💩, he ended up in my bed for over three hours crying and needing me to rub his tummy. I wish I could take his issues away and make him feel better when he’s in pain.

I’m so grateful that nursery is still open during this lockdown as I am not sure how I would be able to work and look after him as he needs constant supervision. My head tells me that I should have made the decision to keep him off to protect us from potential contact with Covid but the disruption of his routine would also be hard on him and he has had enough of that recently. If possible I want things to remain normal for him.

We have lots of messy play planned for lockdown which I’m really excited about but may regret deeply 😂 We tried out slime in the bathtub which was super fun messy but totally worth it to see Williams face, not so much the having to clean the tub part.

Next on the list is finger painting so wish my upholstery good luck 🍀

Posted in Events & Holidays

Yule never guess what 🎄

Forgive the horrendous pun 🙏🏻 but I couldn’t resist.

What can I say about Christmas 2020? What can I say about 2020 in general that hasn’t already been said be everyone? I think this year I had more understanding of what William could and couldn’t handle at Christmas which made it easier for me to make sure he wasn’t overwhelmed.

Each christmas eve I have alway reads William ‘Santa comes to Hull’ I’m not sure why I made it a tradition as it wasn’t one I had as a child but I felt it made it a little special knowing he was on his way. This year William grabbed the book from me and and decided to show me it before I read it… Maybe one day he can read it to me 🥰

I’ve been poorly recently with a mega cold 😷 (100% NOT covid as I had a test) and an injured scapula so the preparations for christmas have been hard physically on top of the usual picking up and carrying William and then the emotional toll of it being my first Christmas alone as a single mom which… If I do say so myself I totally bossed it 💪🏼

Every year without fail we all have always had christmas dinner at my mom and dads house. Christmas isn’t christmas without my mom yelling at my dad to get out of the kitchen or telling us there isn’t room for all of us in the small room, my niece eating more than her share of after eights and my dad hovering round with a bin bag asking if anyone can take it home 🤣 and even more so… it isn’t christmas without big nan. The first lockdown kept us apart for 113 days… so far on this teir 3 we are at 66 days and counting. Thats almost half a year! 😲
I know the rules for christmas day were relaxed but it wasn’t fair to potentially put anyone at risk with William going to nursery, his dad visiting him but working, my sister working and my niece at school… we all felt we would rather we were all here next year to celebrate properly (I’ve also told my mom she has to cook christmas dinner for us all once its safe to do so even if it is summer 🦃 BBQ turkey will not be accepted)

William came down christmas morning and started playing with some of his toys and opening some gifts at his own pace. When this got too overwhelming for him, he retreated upstairs and laid on his bed floor for a little bit until it was time to leave the house. My sister thankfully allowed William and I to go for dinner (the covid test probably helped in that decision😂)

Before I had William I hated Christmas and as William doesn’t usually cope with the festivities I was getting this way again but this year I realised I love it, I love the opportunity to see all our family whilst we aren’t working, to eat good food and just be happy. I think Christmas 2021 will be appreciated so much more than any before it by everyone.

William really enjoyed his christmas dinner and when I say that what I actually mean is he actually ate it this year and pudding too 🍰… I hope his nanna doesn’t take this personally against hers especially after my dads comments last year #dry 😂
We took some of his sensory toys and his tablet so that he could freely do what keeps him happy such as watching ‘Little Baby Bum’ on netflix and biting things 😁 The reason his does this is for oral stimulation… If i’m not careful he tries to eat the fluff on my dressing gown, paper, dog food or his own poop 🤮. I do think William may have an eating disorder called Pica which is relatively common in those with autism or developmental conditions.

When we got home he was ready for round two of presents 🎁 and to spend some time with his dad, which was nice as he got to see him open some gifts too.
We ate left over buffet from christmas eve (yes we had room and no I didn’t cook it; it was a cheeky morrisons order) and relaxed in our new PJ’s until bed time.

Williams weighted blanket from big nan was a smash hit but he wouldn’t share it with me, in fact when I tried to cover myself with my own blanket he decided I wasn’t allowed that either😲

Overall this Christmas (year even) wasn’t the one anyone imagined we would be having but to me its given me a whole new appreciation for the festive season and how important it is to spend time with your family. I’m not saying that this time next year I wont be writing a ‘Jingle Hell… Pt.2’ based on last years post but I think I am more prepared now, I can see what triggers William’s meltdowns and can try to prevent them in advance.

I really hope you all had a wonderful christmas or at least got very drunk to block it out🍾
We will all have a re-do for 2021 and it will be the most magical christmas any of us have known, wouldn’t it be amazing if it was a white christmas too ⛄

Its approximately 28 hours until we can say goodbye to this terrible year, I am still working hard on my Understanding Autism level 2 so I may not get the chance to wish you all a happy new year after today but remember, it can not be any worse than this year.
Much Love M. x 😘

Posted in Appointments

TAF Meeting… Part 4

So let me just take a moment to acknowledge how difficult things have been recently, William is sleeping less than usual and seems to be having more issues with his bowels than ever before… this means a grumpy, exhausted and sometimes hangry mummy at the best of times. Why did I chose before christmas to go on a diet. I’m missing out on soooooo many boxes of celebrations 😭

One of our many ‘stupid o’clock’ snuggles
One of us is wide awake and it’s not me!


As someone who is not afraid to state that I am a pessimist, very neurotic and an overthink you can imagine how I feel going into any meetings and today I was filled with the same amount of dread, not because they’re awful but because no matter how prepared I think I am it never feels enough, at least emotionally.
There we go… self pity over with. 🙃

The meeting was attended by one of the wonderful ladies who work in the special needs room at William’s nursery, the early years senco and myself… a smaller audience than last time but that isn’t always a bad thing.

Williams EHCP has been agreed to be assessed!!! 🎉🎉🎉 a huge relief that we havce gotten over the first hurdle and I don’t have to take it to appeal. It is now with the moderators and I am awaiting the educational psychologist to reach out and conduct their own assesments on William, after that has been done it will go back to the moderators who will band his assesment as either intensive, severe, high or support plan only and some time after that we will be sent the draft to approve. It feels like it has taken a long time to get to this point and even though we aren’t quite there yet it is a step in the right direction.

I love a good table so here is one showing Williams improvement over the last 6 months… Just look at all that green!!!! 🤭

Area of DevelopmentPrevious age rangeNew age range
Making Relationships0-11 Months8-20 Months
Self Confidence & Self Awareness0-11 Months8-20 Months
Managing Feelings & Behaviours0-11 Months8-20 Months
Listening & Attention0-11 Months8-20 Months
Understanding0-11 Months8-20 Months
Speech0-11 Months0-11 Months
Moving & Handling0-11 Months16-26 Months
Health & Self Care0-11 Months0-11 Months

The nursery has advised there has been a little bit of a regression recently and I had to explain about all the changes at home which they understood and will put a plan in place going forward which is amazing, they are brilliant with him and I would recommend them to anyone.

I didn’t want to send William to a mainstream school, I felt it was admitting that a mainstream school can accommodate his needs and I don’t believe they can however today a little bit of reality hit me… I had discussed with William’s dad about keeping him out of school until he gets a place within a special school, it would mean we would have to rely on each other for child care in order for us both to work but we said we would do it however when I mentioned this at the meeting, the senco told me he may not get a place this year, next year or the one after and because their allocations are needs based there is no guessing the outcome. I knew… deep down I did know that it was a possibility but hearing it outloud was hard, I cried (thank god my webcam wasn’t on 🎥) I was very vocal at admitting that I don’t think myself or William are ready for this next big step. It took me two years to send him to nursery!
However putting that aside, I have chosen three schools based on recommendations on their SEN facilities and Ofsted reports and when I am ready I will submit his application, its not due until 15th Jan so I may not be ready until Jan 14th but… I will do it because it is what is right. I think deciding to keep him out of school for a year was a big step but if there is no definitive end date then it is simply impractical and unfair on William. They have told me that they will continue to ensure William is thoroughly supported no matter the setting which based on the senco’s promises previous I 100% believe.
We have a meeting penciled in for March to discuss his transition from nursery to school as I ideally want to increase his days at nursery after easter so that it isn’t too much of a shock for him going to 5 full days.

Special school allocations are announced the end of January/February and mainstream are announced mid April so I will have time to prepare no matter the outcome but it is going to be a long couple of months.

I want to end on a laugh so let me tell you about William’s girlfriends at nursery…
William doesn’t really interact with other children however there is a girl in his class at nursery and she has has taken a liking to him and hugs him really tight every time she sees him to the point his key workers have to pry her off either so she doesn’t strangle him or after William gives them the ‘help me’ look.🤗
So girl 2 doesn’t like William but she does like the sofa he has claimed in the reading nook, William doesn’t want to share his sofa so what the ladies do is seat them at separate ends of it. The girl is fine and quite happy but not for long… William lays all over her until she gets upset and then he laughs! and my mom tells me off for calling him a psychopath! 😂

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 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 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