Posted in Brief updates

New Year, same hopes and dreams

Its now 2022, how crazy is that?
It doesn’t feel like over 22 years ago when we were all relieved the millennium bug didn’t exist, you know that massive system issue that would affect computers and, in some cases, all electronic devices ⚡ How ridiculous is it that we thought that was possible 🤣

This is going to a big year for William, by the Easter term he should have a place in a specialised school. I’m under no illusion that’s its going to be easy… for example I contacted our case worker Richard on the 1st of December for some form of clarification on dates and have yet to receive a reply. When I email the main address, it usually takes two or three emails for anyone to bother replying and its usually a ‘no update’ generic response and that they will contact me, but I like to chase each month as its better to be an irritation and remembered than be forgotten. Those who speak the loudest are usually remembered. 📣

We were lucky enough to qualify for legal aid and have a solicitor on standby due to this after the failings in the local authority already. This isn’t because I want to sue although they did ask if I wanted to push for compensation… but why take money from an already underfunded department, in my opinion that would just be adding to the problem. They are on standby in case the promise of a specialised school by the term after his birthday is broken. They made this promise verbally and on his EHCP which is a legally binding document.

This is probably the biggest battle war we will face because once he has a place then he is in the right form of education until he reaches young adulthood… then we fight the next war.
Everything else, although it’s a battle isn’t as huge as schooling. (Although wheelchair services are currently the thorn in my side right now, but I’ll sort that out as and when)

This is going to be our year; I can feel it. It may not be easy, but it will definitely be the year in which things start falling into place for us and this Momma Bear will be able to have a rest from fighting. 🐻

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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 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! 👪