Posted in Events & Holidays

Family Holiday

As many of you will be aware we have recently been on a big family holiday for the first time in 2 years and as you can imagine things with William have changed greatly since our last vacation.
I love getting together with our family but as anyone will be aware it can be stressful; throw an autistic child in the mix and it can be nuclear which meant my stress levels peaked before we had even left the house.
‘What can he cope without?’
‘What if he smears whilst we are there?’
‘What if he cant handle it being around so many people?’

I know it sounds a little crazy as my mum and dad were there and he loves them both so much and my dad will babysit when I was office based, my sister and niece were there and he loves his Auntie Nellen (or H to everyone else, the letter H doesn’t exist in Kingston upon Ull. ⚙Yes the cog used to be our logo 🙄) Big nanna came for the first time and we all know what an amazing bond they have and finally his Uncle Jim and lets face it unless he has to change a nappy he is amazing with him (if we ignore the fact he’s banged Williams head more times than Rick Allen has banged his drums🥁)

Here are some of my favourite pictures from the week 🥰🥰🥰

Picture 1 – We were delighted to be able to borrow a freeloader carrier which personally is amazing for parents of children with special needs to be able to safely carry them to areas you would not be able to get to with a stroller or wheelchair. Unlike a baby carrier it has a seat on an reinforced hinge which means that when your child sits on it the straps are not brutally cutting into your flesh due to the weight of your lump child. Its a big expense as they are imported from America but I would honestly say they are definitely worth it and we will eventually be looking at getting one of our own 💸💸💸
Click here to check them out

Picture 2 – We’ve discussed on previous posts about Williams refusal to walk and lack of awareness when it comes to roads. Here is a prime example. We had walked for less than 2 minutes and William collapsed in the road. He makes himself go floppy so he is impossible to grab onto and will just lay wherever he has fallen an believe me he is more slippery than a bar of soap and his limbs just slide through your hands. 🧼

Picture 3 – William love bubbles but hates bath time 🛁 so after a traumatic bath which was much needed as he decided to sit in the stream we left all the bubbles in the tub for him to lay and play in. Dave took so many photos and Big Nanna sat in a chair watching him have the time of his life and I’m so glad she got to see that as she had witnessed a meltdown at the beginning of the week which I will talk about later.

Picture 4 – Dave loves the walks up in the dales and has climbed the peaks and everything… Me; no so much. My version of exercise is walking to fridge or picking up my phone to order on just eat. 🍕 We decided to spend one of our days in our little 3 person bubble and went to explore the village. Whilst sat with his dad on the bank of a deep stream William lost a one of his Wellies over the edge and Dave had to go in and fetch it… as you can see no shits were given by William at all and he is actually calmly sat on grass which is a big improvement.

Picture 5 – Dave referred to this table as a 70’s party table due to its mirrored surface. William had his first little holiday romance… with himself. It’s like he discovered his reflection for the first time and spent a good amount of his time kissing his reflection 😘 William doesn’t quite understand what a kiss is and his version is coming at your mouth with his mouth open and there is always a risk you will get bitten but its worth it, I would take a million bites for one kiss.

Picture 6 – He loved the streams that ran though the village and we went in for splashes at every opportunity. We learnt a few things on these mini adventures. My wellies had holes in (they were about 10 years old), William loves the running water and decided to wade as far as we would let him, to the point the water was over his wellies so I wasn’t the only one with wet feet and finally that he will literally just sit anywhere including in said stream 😂 It made the short walk back to cottage much longer, wetter and colder.

William had one meltdown whilst we were away and unfortunately it was the worst we have experienced so far. He went red and started screaming and repeatedly hitting himself in the face with both his hands clenched together 😢 It hurts me to see him so distressed however I now know not to try and restrain him as it makes it much worse.
Big nanna has never experienced a full meltdown and it really frightened her. I could see it in her eyes and asking me to stop him hitting himself and asking me what was wrong and to be honest I couldn’t work it out. He has been to toilet, he had eaten well and nothing he hadn’t eaten before, he had his favourite toys and Hey Duggee was on the TV. I don’t know if it was the new environment or he just wasn’t feeling himself but it really frightened her which upset me alot.

I think being told about the way someone reacts due to their additional needs is very different from seeing it first hand.
Autism in a spectrum which is so vast and complicated it is difficult for people to understand, even those who are close to someone with ASD don’t fully understand the possibilities or the limitiations and it can make explaining them exhausting 🥱

Some things never change…

The journey home was uneventful as you can see from the above picture the journey home was uneventful, either that or they just didn’t think much to mine and H’s music choices 🎶

William missed his friends back home and Rusty which was evident because as soon as he saw each of them he was so happy. He practically ran straight to our next door neighbours for cuddles, my pets and child are all starting to think they live there 😂 but in all seriousness I actually love it. He has an amazing bond with the full family and I trust the girls to take him to park and be safe with him and it takes alot for me let anyone do that. He was sat on the roundabout in park and quietly ate his packed lunch as it went round when some older kids (secondary school) asked one of the girls to make him move and she told them no, he has problems and he’s happy where he is and they just left. She has more balls than I think I would have done.

One of our other neighbours got back from their holidays today and as you can see William missed them that much he sat in their car and made himself comfortable.
GTA eat your heart out 🚗

As always much love, The Buckleys 😘

Posted in Events & Holidays

Happy Birthday William! 🎈

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 🤮)
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 now😴
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 🤣)
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 🎶
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 📫(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 🤢 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 must😴 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. 🤞

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. 🤣 We also narrowly avoided him biting into a balloon. 🎈

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 day😊

Posted in Events & Holidays

Jingle Hell 🔔

Christmas is a hard time for kids like William, kids who can’t take on board change and who become overwhelmed easily. His weeks are usually as structured as we can get them to prevent meltdowns or what I like to call ‘hunger strikes’ he ends up so upset and out of sorts he won’t eat anything and anyone that has witnessed William with a Sunday dinner knows this is a big thing for him to refuse. His nursery will give him second helpings of all his meals to stop him taking other peoples… I think I should be embarrassed of this, but he definitely takes after me 🤣

MondayDad takes him to nursery
TuesdayDad takes him to nursery
WednesdayOne on one time with dad and then grandad
ThursdayOne on one time with Mummy
FridayOut and about with Mummy
SaturdayFree for all or a trip with Danielle
SundayVisit Big Nan

William hasn’t been to nursery since 23rd December and isn’t due back until the 6th January. I hope returning won’t set him off as much as not going has as he is only just calming down.

Christmas eve was fine. We went to spend time with Harry so they could hopefully wear each other out and William was almost well behaved except the usual, eating paper, throwing food on the floor and trying to destroy all Harrys toys but on the night he slept like an angel. 👼🏻

Best buddies

Christmas day was a completely different scenario. As we go to my parents it means he needs to get up much earlier than usual which never goes down well, especially as on a Wednesday he usually gets a lie in.

He didn’t want any breakfast or chocolate… yes, I’m a bad mom by trying to bribe him to eat and I’m not ashamed but even that couldn’t tempt him.He opened a few gifts and wasn’t interested after the paper was gone and then decided he had had enough and didn’t want to open any more. Didn’t want to get dressed. Didn’t want to leave the house. Needless to say, we were late to my parents. ⏰

I guess we didn’t help the situation and our living room was a massive sensory overload. I didn’t even think about how he would react. I just thought about how as a kid I was always absolutely buzzed to see all my new toys at once and couldn’t wait to start tearing things open or playing with them. William was absolutely spoilt and not just by us; there was outdoor equipment, a wooden kitchen, a train table, a bubble tube and so much more! That little feeling of pride burned inside me. We did this. We shopped around and bought bits all year. We have well and truly outdone ourselves with Christmas this year! But that’s was the problem. It was more for me than William, next year will be different as I know I was selfish by giving him too much. That wasn’t for him. That was to make me feel better. Next year I will do my best to ensure Christmas is focused on what my child wants and not what I think any child wants as there is a big difference.

Boxing day was a blur and we went to see William’s Great Nan in her nursing home. William didn’t eat all day and wasn’t interested in his Great Nan. It can be heart-breaking as I know Dave would love to see William cuddle his G.Nan and acknowledge her but he just isn’t wired that way.

By the 28th he was eating properly (also classed as ravenously) and seemed to have settled. He has slept so well for the first time since Christmas eve and he must have been running on fumes and frustration since then. I literally thank god that he is getting back to himself but then panic sets in as I don’t want him used to this kind of routine as it isn’t a routine at all.

And now we are on to today, New years day 2020! The family are all together except Dave who must work, and William is his usual happy self. He’s laughing, playing and cuddly. He eats his dinner (and mine) two desserts and then some. 🍽🍽🍰 and now we are at home and he is fast sleep.

Happy new year William!

Our new years resolutions as a family

  • Be open and honest about William and his progress (we started this one early)
  • Continue to be proactive in fighting for Williams referrals and needs
  • Spend more time as a family
  • Come off my medication

I have been on antidepressants for over 18 months and I finally feel in a place where I am ready to come off them. I understand and accept my child, I am happily married to man who would walk over broken glass for us, I have a new job that makes me happy to go to work and I have a wonderful support network. I had almost all these things before however there were so many changes in my life I couldn’t handle it.

This last year or even decade hasn’t been easy for us as a family but 2020 is going to be our year. We started our journey in 2019 and are fully prepared to stay on the ride.

To be honest we wouldn’t have it any other way! 👪