Posted in Brief updates

Let’s have a catch up – May 2021

I have a little notebook that comes with me to all of williams meetings, I use this same notebook to jot down ideas of posts if something has happened or if I am feeling in a sharing mood. Quite often these ideas and thoughts don’t come into fruition so I thought I would put together a little catch up post of all the things I have yet to fill you in on.

So here is a little summary of what is to be included in this piece.
* William’s birthday
* School allocations
* Nappy service
* Impaction
* Big Nan

Williams 4th Birthday!

How is my little 8.8lbs baby now a four year old?! I swear to god I have just blinked and missed a few years. I’m sure I am not the only parent who feels this way but it seems like time has flown by. I can’t be really surprised as we are dealing with school allocations and that doesn’t happen until they reach this age but holy shit he is now 4!!!

I got some funny looks and questions when people asked me how we would be celebrating his birthday. As many people know William struggles should his routine change drastically so my plan for his birthday was to ignore it… not completely but to protect the main structure of his routine. He woke up the morning of his birthday like any other Monday. His dad came to do the nursery run and the house remained as normal. No sign of birthday regalia at all.
He ate his breakfast and went to nursery in his amazing birthday T Shirt (one of many ๐Ÿฅฐ) made by his Auntie Debs.
We sent a Curly Caterpillar cake from Tesco for him and his friends to share in the sunshine room. No one tell M&S! #FREECUTHBERT ๐Ÿ›
Whilst he was at nursery his dad (yes we are still coparenting) and I set up the living room with his gifts, card and balloons for him to come home to. I even cooked him his favorite tea which was a full roast dinner with all the trimmings! We had decided to celebrate after nursery so the change to his routine wouldn’t throw out his full day and cause his potential upset at nursery and although people thought it was mean, we found it actually worked really well for William and is something we will look at doing going forward. He came home, explored the living room, picked his favourite new toys and then ate his dinner. It was lovely to see him so calm.

Presents this year were amazing as our friends and family understand suitability and what William classes as high interest. I think the most amazing surprise was a handmade busy board from his uncle Jim. William immediate fell in love with all the fiddly bits and it has sat in the living room ever since for him to play with.
Every year I usually make William a cake but this year I purchased a premade ‘Hey Duggee’ cake and as you can see he was quite happy with it and ate too many pieces to count ๐Ÿฐ๐Ÿฐ๐Ÿฐ๐Ÿฐ although I made sure his dad and I got at least one piece each.
We had a few nice doorstep visits from friends and family which really made the day special as we hadn’t seen them in such a long time. #covidsucks

School Allocations

I have written a lot about allocations in other posts and on our social media pages but I just wanted to include a little summary of what has happened so far…

  • February 15th – William was not considered for a special school place but may be considered during the moderation for his EHCP (highly unlikely)
  • March 2nd – Moderating should have taken place but didn’t ๐Ÿ™„
  • March 15th – Moderation went a head and no special school place given.
  • April 16th – Mainstream allocations released.

William did not get into his first choice of mainstream school… because why would he. They like to make things as hard as possible after all!

I now have to follow the appeal process which is due in on 21st May. This shouldn’t matter as I should be able to name our chosen school on his EHCP but the SENCO advised we should go ahead with appeal to cover all our bases. This doesn’t fill me with confidence when the system has let us down so many times already ๐Ÿ˜ฅ

The Nappy Service

As I have mentioned previously the nappy service is available for children who have reached the age of four which meant that when William needed them they were unavailable to him until he turned 4. We were incredibly lucky because the amazing Essity stepped in and provided us with nappies until the service could be applied for. This saved us hundreds of pounds and lot of stress and we are so grateful for their help in what felt like a time we were forgotten about and fell into one of the many gaps in the system.

On Williams birthday his health visitor put the referral across and we now have the service in place, first delivery pending. The only issue I encountered once we were referred to this service was that we had been sent a certain nappy which was a type the service also use, ideally i wanted to remain on these as I knew the sizing and the fact they could hold up to Williams movements etc but apparently its a bit of a postcode lottery and because we are not in the East Riding we are not eligible for that brand ๐Ÿ™„ I’m not even sure why that matters but aparently it does.

The lady that called me was brilliant, she understood I was working and may have to dip in and out of the call. She went through many questions with me and it was actually a pleasure to speak to her but what really made things better for me about how I was feeling as a parent was this message…

I needed this and it made me cry ๐Ÿ˜ญ

Impaction

Warning this is about poo! ๐Ÿ’ฉ

One thing that came to light recently as a follow on from the nappy service call was that William may have an impaction in his bowels, we are unsure if this is just nature or if it is due to the many things he eats which are not food. I mean it was only the other day his dad had to pull carpet fibres out of his bum ๐Ÿคข I’m so glad that was on one of his dads days ๐Ÿคฃ

They believe his problems going to toilet are not just because of a lazy bowel but because there is an impaction which hasn’t cleared and everything else is adding to it or coming around it.

We have been given additional Movicol and Laxido to try and help it clear but, if it doesn’t i’m not sure what will happen next other than the fact we have to go back to the doctors to check what our options are.

I am trying not to google or freak out but this is me after all so check back in shortly and I may be weeping at my desk!

Return of The Big Nanna

184 days… 184 long days!
297 days in total… almost a quarter of Williams life without his Big Nanna.

I don’t know how soulmates work, I thought I did but their bond proves me wrong completely; she is 91 and he is 4 and they just light each other up. Big nan is suddenly young again and William is suddenly capable of interacting on a much higher level, he sees her and I mean really sees her. He finds comfort in his Big nanna just like I did in her when I was a child. To him, she is home, safety, love and lots of snacks.

Family ๐Ÿฅฐ

She has had her vaccines and as lockdown is lifting, things can slowly get back to normal and our normal is seeing Big nanna every Sunday for snacks and snuggles.

I should be back on top of posting now so I will hopefully be back to post more regularly going forward.
As always please remember to subscribe down below.
Much Love M. x

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Posted in Events & Holidays, 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. ๐Ÿ›ซ๐ŸŒ๐Ÿ›ฌ

Our top 10 countries to be read in are as follows (How has this even happened๐Ÿ˜ฒ)
* 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 love๐Ÿ˜˜, M & W xx

Posted in Appointments, autism and covid19, PCP & TAF Meetings

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 ๐Ÿ˜ฃ)
  • 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 ๐ŸŽ‚

Much Love, The Buckleys ๐Ÿ˜˜

Posted in Events & Holidays

Happy Birthday William! ๐ŸŽˆ

How the hell are you three already? It feels like yesterday I held you in my arms for the first time (and then proceeded to throw up everywhere ๐Ÿคฎ)
Three years down the line and we still sneak into your room to check you are breathing, although usually we can hear you snoring from the landing now๐Ÿ˜ด
That’s 1095 days (1096 since this year was a leap year) of you. Every day filled with the joy we feel at being parents to such a loving little boy. Every one of those days teaches us something new about you and the world you creating for yourself.
You have made us become stronger parents and people than we ever thought we could be. We have learnt to fight for what is needed for you or even us as a family.

Its been a weird year. Its been a year of acceptance and education for us as parents; this time last year we were both in denial about Williams issues and we struggled to even speak to each other about it. Phrases like ‘He’s just lazy’, ‘He can hear you but he’s just ignorant’ or explaining away his missed milestones ‘Well he is very top heavy with his little bobble head’ (still true but not an excuse just a trait from the Hobman gene pool ๐Ÿคฃ)
This time last year we were preparing for the 2 year check and the questionnaire had not yet arrived… but when it did we had a moment of clarity that all parents should have and agreed to be brutally honest about what he can and cant do. We filled it in with pencil and rubbed out so many times. We both took the time off work to make sure we could go together and keep each other honest. It was hard. Those of you that have reading this since we started it will have travelled with us on that journey and felt what we felt. Cried when we cried and gotten angry when we have.
We have had meetings about meetings, meetings about plans and a few meetings which actually resulted in action.

When we moved house in summer we decided to put Williams name down for the nursery that is attached to what we thought would be his school in the future… We are yet to receive a call to offer him a place in the nursery but I can categorically say we would turn it down. His current nursery have been amazing meeting his additional needs which is why we haven’t moved him and make the dreaded public transport trek back to our old stomping ground. They have been so supportive with us as parents and helped progress us through his journey more than we could have ever hoped. They source funding and provided one on one support with Val who is amazing with William and so knowledgeable about up to date processes for children with sensory issues, speech delays and more. They’ve arranged specialists to come in and assess William for any other issues he had been facing and kept us so up to date with his progress both developmentally and socially.
They arrange quarterly meetings to discuss next steps with us and all the professionals involved with William to ensure we are all signing from the same hymn sheet ๐ŸŽถ
If any one reading this wants any information on his nursery for their children please contact us via our ‘Lets Talk!’ page.

What a difference a few hours make… I often draft my posts and come back to them if I get too emotional or life gets in the way, I won’t take back anything nice I said about nursery as its all so true HOWEVER… today william came home with 2 bite marks. NOT 1 BUT 2 OF THEM! Apparently 2 separate instances today and there have been 2 others on different days! Thats 4 different bites over the last month. I understand that children with complex needs can lash out or simply not understand what they doing especially as William has bitten me on occasion however as William should have 1 on 1 support 100% of his time there you would imagine these could have been preventable or at least the second instance today! If it’s the same child (dont care which one) then safeguarding should be in place so that supervision is on hand at all times. If William has been bitten four times how many other children have been??? I have reached out to the manager to find out what is happening and what they are putting in place to prevent these incidents going forward so I will keep you updated on that.

We are in a little bit of an appointment limbo right now, for the first few months we had multiple appointments and now we only have one in the pipeline which is 2 months away. Don’t get me wrong it is an important one as its the PCP meeting (Parent Centred Planning meeting) to discuss his future education and where best would meet his needs. We will then put steps in place to obtain an EHCP (Education, Health and Care Plan) which will ensure he receives the support he needs when he transitions from nursery to primary school. I think we have both come to the conclusion that as things stand now that William will need to attend a specialised school who can cater to his specific needs however places in these kinds of schools are very limited as it is a massively underfunded sector. Money is often ploughed into hubs at mainstream schools which has provisions for children with additional needs however any child placed into one of these hubs is a child that thats needs to be in a specialised school and just watching the parents of children starting school this year talking about it on my support group was heart wrenching and filled me with a low burning anxiety that doesn’t seem to be going anywhere any time soon. We have received reports back from speech and language and IPass confirming verbatim what they had told us after their visits to nursery. They both contain what will happen next but no dates so we are just waiting for further info like with everything else. Just like waiting for his blood tests and genetics testing… just waiting for them to hit the mat in an afternoon ๐Ÿ“ซ(our postman likes a lie in) It’s just the long wait now… sorry I mean the long wait just continues now. No confirmation as of yet that William has been accepted on to the ASD Panel list but again we are waiting for it.

Posted in Events & Holidays

Happy birthday Harry!

Today was a great day! Today was Harry’s birthday party; the first party William has been invited to. I do worry that he won’t get many invites as he gets older due to his antisocial behaviour and his tendency to become overwhelmed.

I’m not going to lie to you as that isn’t what this blog is about. As you can guess today like most days started out badly. William had smeared the contents of his nappy everywhere ๐Ÿคข and when I tried to change him he repeatedly hit me with shitty hands and when I tried to stop him he bit me. I had to wake up David to help… not what he needed after a night shift but needs must๐Ÿ˜ด Breakfast wasn’t eaten, well not by William anyway. Rusty thoroughly enjoyed his toast this morning and William enjoyed trying to take a chunk out of my leg when I dared to take his plate away.

Once we were out of the house things took a much better turn. William was calm and happy which is always my favourite version of him. Don’t get me wrong I love every version of him but this one is just amazing. The happiness in his face is one of the purest things I have ever seen and even now when I hear his little laugh I well up a bit.

The party itself was at Hull Community Church which I must say was a brilliant venue. They have an amazing play area in the back which is like a imagination role play wonderland. It was a bit overwhelming for William who chose to be sat with me in the hall the entire time but it was amazing watching all the kids have a ball.

I worry about going to places like this with William incase parents make comments about him or he goes into full meltdown mode and they judge me for having a ‘naughty’ child but they were great and no one made us feel uncomfortable which for people that don’t know us is wonderful especially when we’ve learnt people close to us aren’t always that nice.

On his good days William has a big attachment to food. On his bad days he won’t eat at all but today wasn’t a bad day. As soon as the buffet was out he was there like a shot wanting popcorn. Thankfully Danielle and Simon have spent enough time with us to understand his attachment and happily gave him a plate full of popcorn.

I learnt today that William isn’t fond of the loudness that comes with lots of children who are in full blown party mode but he handled it so well. He rubbed his ears a lot but just cuddled up into my lap until they went back to play.

He even chose to eat a sandwich! Which is a massive deal for William as he never touches bread as he can’t handle the texture but a cheeky egg mayo sandwich called out to him and he just grabbed it and wolfed it down… well not just one but 3! I nearly cried. Something so silly as an egg sandwich brought a little tear to my eye.

Toward the end as he was getting tired he became grouchy and when I had to put his shoes back on so that we could leave he started hitting himself but thankfully this only lasted about 30 seconds. ๐Ÿคž

I don’t know if any of you have seen the original Series of Unfortunate Events with Jim Carey but at one point William was hanging from the dining tables by his teeth doing a Sunny Baudelaire.
Not many parents have the pleasure of telling their child to stop eating the table. ๐Ÿคฃ We also narrowly avoided him biting into a balloon. ๐ŸŽˆ

Once the party was over we went back to theirs to watch Harry open his presents and other than munching on a few envelopes William was content watching him and he enjoyed the rest of our day relaxing and playing with Harry’s trains. He is very comfortable with their little family which makes me feel less worried about his future and the level of understanding people have.

Today was definitely a really good day๐Ÿ˜Š