Posted in Events & Holidays

Peppa Pig Live – 23/07/2022

I despise Peppa Pig, in fact I think in my last post that I referred to her as a talking piece of bacon but lets be serious… she is an absolute brat but… the kids love her 🙄

Let’s put it this way, Peppa Pig Live was not exactly on my bucket list but William’s Aunty Debbie was kind enough to get us all tickets. She’s really good like that, tries to push me out of my comfort zone whilst be ridiculously nice haha. I would never have gone, not just because she needs to be in a sandwich but because I would have been so anxious about how william would react and if it would be too much for him but after our successful beach trip, I was all in.

I love our little blended family and this was the first big event other than Hull Fair that we have been to like this, so that added pressure maybe didn’t help my anxiety but despite this I was actually really excited.

The performance was in Bridlington at the Spa, starting at 10am so it meant we had to be fully on it in the morning to get everything in the car, the kids fed and sorted etc. Since the performance was in Bridlington we took advantage of being at the beach and the fact the weather was going to be nice and decided to make a full day of it so the car was pretty full with beach toys, blankets, picnic, the works.

A stressed but happy family at 8am 🥰

The drive down was easy, both kids were happy sat in their car seats as we sang along (badly) to cheesy music. It honestly felt like we arrived within seconds rather than 45 minutes.

So now onto some bad points… have you ever tried to find disabled parking in Bridlington? There is a place near the Spa but it seems to always be full. there are no sign posts indicating disabled parking anywhere. We parked at the harbour an managed to get a spot that had extra room to be able to get Williams chair out of the car, this wasn’t a disabled bay, just a lucky find.

Let’s talk about toilets, anyone with a child or a person that needs assistance in changing them will know that some disabled toilets are just not suitable. Imagine my surprise to find these… ‘South Cliff Gardens Public Convenience’
For the first time in forever, I remembered to take Williams Radar key and I am so glad I did… I’m not sure if I am overreacting but I feel like I have hit the jackpot for fully accessible toilets.
Handrails, space for moving a chair with a large turning circle, sharps/hazardous waste bins, adjustable electric changing table, in perfect working order and a fully working electrical hoist system. I was honestly amazed and had to take some photos (once I had changed William obviously) All the equipment was clean and worked perfectly. If you do visit bridlington and are in need of an accessible bathroom then I would highly recommend this one! 🏆

We made our way to the Spa with plenty of time to collect our tickets, I had called them in advance (a few times🤣) to ensure they had a wheelchair space available for us. I would hate to have to disappoint the kids if it wasn’t accessible to us once we had arrived. The staff had reserved us the wheelchair space and 3 accompanying seats in advance which meant there was no hustle and bustle once we had arrived. The spaces were in a perfect location meaning that we had full visibility of the performance but were also away from the bulk of attendees which I think helped William acclimatise to the noise. I think if the performance had been full then he may not have coped as well.

The show started and William was a little upset however he soon realised that he wasn’t been tortured (although I was 🤣) and that it was actually something enjoyable for him. He laughed, he clapped and ate all the snacks. He love it, as did Little Miss who was singing, dancing and joining in with interactive songs and I will only ever admit this once but it wasn’t actually that bad. The show focused more on a human rather than Peppa which made it bearable. I would even go as far as to say that I would take the kids again… Why wouldn’t we want to go when they both loved it so much?

We are back onto the conversation about toilets, the show was about an hour and twenty minutes with a mid way interval. They sold Mr Moos ice cream so Liam & Little Miss grabbed us some whilst I took William to the toilets. The disabled facilities where also baby change facilities which meant there was a large queue with it being a children’s performance. I understand when places need to do this but somewhere as large as Bridlington Spa should be able to have separate facilities or incorporate baby changing into the mens and womens toilets (because let’s face it, men change bums too but yet places tend to put the facilities into only the women’s! 😡)

The toilet was tiny, the first picture was taken with my back against the closed door, the second from the same location as the changing table was in sort of a recess.
The changing table was not suitable for William, It was not built to hold his weight… I thought I was passed having to change Williams bum on a dirty toilet floor, sadly I was wrong. If you aren’t going to have fully accessible toilets (handrails do not make you fully accessible!) then at least have a clean fucking floor! 🤢

The kids fleeced us for merchandise, Little Miss got a glittery pink tote bag and Will;ster got the Mr Dinosaur soft toy which was a massive success. I mean they were super expensive but worth every penny. The venue isn’t daft as they place the merch stand in a place that is unavoidable upon entering or leaving the performance and even had a gent who stood at the from of the stage before the show, advertising the toys. It may put some parents in a horrid situation in which they maybe can’t afford to buy their children these items in which they are having waved in front of their faces. Young children don’t understand that money isn’t always readily available.

Once the performance was over we headed off for lunch and went to the Stirling Castle. Little Miss had a cheeseburger kids meal and William had a sunday dinner, both of them did really well with their food and they were perfect portions for children. The pub itself was very accomodating, lots of space to navigate the chair, no overcrowding and patient staff who didn’t scoff when William started throwing his chicken on the floor, I do pick it up though. I didn’t check out the toilets but I would still highly recommend them for a quick lunch. Pricewise I think it was good too, about £35 for 2 adult meals, 2 kids meals and 4 drinks.

Then time to get sand between our toes, we grabbed our picnic stuff, beach wear and found a good spot on the beach. William immediately tried to run off into the sea. I think I upset him a little since I stopped him in order to change his clothes but once he was sorted he was off. Little Miss was a bit more patient and was happy playing in the sand rather than wanting to swim out to sea. Liam took William as far out as he could, William was laughing and splashing the entire time, then Little Miss was ready to go for dip. William had a bit of a shutdown at this point, I’m not sure if it because he was cold, the sensory aspect of wet sand, clothes etc or maybe he just wanted to be back in the water but he picked his usual position…

He reached out for my hand and stayed there for quite a while just blocking out the world (I think we all wish we had that ability and I would class it as a superpower.🦸‍♂️), once Little Miss was out of the sea, she decided to comfort him and stroke his back. I have the most adorable video but I am unable to share it as my video editing skills aren’t very good and wasn’t able to hide her face. She did something similar not too long ago and I shared a small post and photo to our facebook page. Check it out by clicking here. Kids are so amazing in the way they just assess emotions and react.

Our final little bit of excitement before heading home was on a search for seafood, ice cream and donuts. William got his sugared donuts that he usually has at Hull Fair but I think the excitement was too much for him by this point and he maybe only had one small bite at a push. Liam searched for a dinosaur shaped ice cream (George had one in Peppa Pig 🙄) as that was all Little Miss wanted but nowhere sold anything like that so he fobbed her off with mint chocolate chip claiming it was ice cream that dinosaurs eat, he’s lucky it worked to be honest although he did end up wearing most of it as she was sat on his shoulders eating it and it was everywhere 🤣🍦 I am definitely my dads daughter and got myself some welks and a lobster tail which I imagine would have been really nice but a seagull decided it would be nice too, so hit me in the head and took the lot 😫🦅 I manned it out though, waited until I was out of the crowd before whinging about it and asking Liam if it had pooped in my hair. I know I have a big forehead but its not big enought to be a landing strip for birds!

The journey home wasn’t as fun as the journey there, Little Miss was fast asleep within seconds of her being in the car and William decided it was the perfect time try and eat as much of his nappy as humanly possible. We had to do an emergency pull over on someone’s drive to sort him out… It was the most stressful 15 minutes of the day, having nowhere to pull over and knowing I couldn’t do anything to stop him but it was all new for us so we will remember this next time and make sure he is more restricted in his clothes because there will be a next time… We must be gluttons for punishment. Paw Patrol Live here we come! Plus another day out at the beach with the full Hobman clan! 😲😜

ItemScore
Parking5/10
(It is available but there isn’t much of it and it’s not well signposted)
Bridlington Spa5/10
(Customer care & seats would make it a 10/10 but the toilet situation would be a 0/10)
Peppa Pig Live10/10
(Highly recommend for young kids or those with special needs.)
The Beach8/10
(Very clean but not too accessible, had to walk quite far for a ramp to go down with the chair)
Stirling Castle7/10
(Food good but not great, price reasonable and pub clean.)
Company 10/10
(Is there anything better than spending a day with your family?)
Seagulls0/10
(They owe me a fiver for the seafood! Flying B*****ds!)

I would take a 100 seagulls to the head to have more amazing days as a family, we might not all be blood but history has shown it doesn’t really matter. Much Love, M.x

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Posted in school

Self doubt

I had a moment last Wednesday night… and when I say a moment I mean that I didn’t sleep through worry (or maybe it’s this cold 🤧)

I worry alot so this may not seem unusual but this was different, this wasn’t necessarily my usual kind of worry. This was more self doubt. I had fought to get William the right education for what feels like eternity, we got the school we chose but I started to panic that I was wrong. What If it wasn’t the right decision. What If I had fought so hard for the wrong thing.

This hadn’t come our of no where, it was because Williams dad and I were taking to his new school the following day and I had become immersed in this overwhelming fear that I was wrong. I can only compare it to one other feeling I had had previously and that was when I was pregnant, I was terrified that when I went for my first scan, there would be nothing there. It was that same kind of feeling! I spoke to other people about the scan feeling and I’m most definitely not the only one and I imagine my doubt about the school wasn’t just something I experienced but last Wednesday night I felt alone in my fear.

The Thursday morning was just as bad, whether is was the cold, my bad shoulder, the lack of sleep or the worry… maybe even a combination of all three but I didn’t stay still, I couldn’t eat or focus on anything other than watching the clock waiting for the time I needed to meet William and his dad. Let’s just put it this way… the saying is right. A watched clock does go slower. ⏰️

I had spoken to Williams teachers via email a few times over the last few weeks but it’s not the same as meeting face to face. The moment we arrived at the school, they put me at ease. They didn’t just fall in to SEN teaching, they are there because they are passionate about it, because its not just a job to them but a vocation. They know every child from noises they makr in the other room, from tiny footsteps or a stray sock on the floor. Other parents had given me glowing reports about the teachers too which all made sense once i met them. William immediately connected with them and just left us to go and spend time with his new classmates. I knew as soon as he did that, that all the worry was for nothing. It was 100% the right decision for William and I was right to fight so hard for it.

The school itself is perfection. Everything is laid out perfectly, there is structure to everything and more visuals than you can possibly imagine. It’s so accommodating for children like William. I would love to say I held it together but we all know that would be a lie. I sobbed at how perfect it was for Williams education, the fact that he will travel through the school and be safe and in the right environment until he turns 19 just gave me this overwhelming sense of relief and in a big headed way a sense of accomplishment. I did that. I fought and I acheived it. All the worry was gone and I felt proud of myself.

27 days. That’s all he has left until he joins his classmates and I can not wait. I’m so excited for him to be in an environment that will be so beneficial to his development.

Uniform all ready 🥰

It’s been a long time coming but it will be here in the blink of an eye and as confident as I feel about it, I know that come that date in April I will be an absolute mess.

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Posted in Reviews

Disney’s Encanto review

As I am writing this, I am not ashamed to admit that I am now on my second watch, you know… just in case I missed something the first time or so I can sing along to some of the songs.

🎶🎤 We don’t talk about Bruno, no, no, no! 🎤🎶 I have a feeling that this will be on my 2022 recap on Spotify based on how many times I’ve played it, even before seeing the film.

I had seen a few articles online about the parallels between Encanto’s Mirabel and living with autism in a neurotypical family and usually I don’t need an excuse to watch a kids film but though this would be the perfect opportunity to get it done and see if I pick up on some of the same themes or to see if it resonates with me but, before I start I want to state that I am super excited to see that Disney are continuing to become more diverse. Plus, they have finally introduced a main character who wears glasses so I’m all in for this movie. A friend of mine explained to me why they decided to have a lead wearing glasses and it’s really lovely, a 9-year-old girl wrote to Disney and basically called them out for having no characters that look like her. I’ve managed to find a tweet about it from the director/writer, Jared Bush. https://twitter.com/thejaredbush/status/1488875738463834116 it also includes a video from the girl. Disney really are stepping away from their poor history with acceptance of any kind… If you haven’t seen the Sparkshort short films on Disney+, then you must check them out, specifically Float and Loop.

Float to me, perfectly depicts the struggle of acceptance when you have a neurodiverse child and Loop helps understand what that child may go through… I highly recommend you give them both a go, especially since they’re only about 10 minutes long, I’ve wasted more time watching adverts or thirst traps on TikTok🤣

As soon as we, the audience find out that Mirabel has no gift, the other characters seem to refer to it a lot… some in subtle ways and some not so subtle. There is a definite similarity there between everyone pointing out she is different, and the way people behave about William being autistic. The label of being autistic seems to come before people know William’s name… ‘the autistic boy’ ‘my friend’s kid is autistic’ The label seems to come before he does. Its almost as if William can’t be William without someone mentioning his autism, just like Mirabel can’t be part of the family Madrigal without someone pointing out that she isn’t like them.

The scene under the bed with Antonio was beautifully done, portraying the innocence of a child trying to understand his cousins’ difficulties, he wishes she were like the rest of them but is also scared that he is like her.

The flashback scene 😥I’m broken😭When she went to the door and didn’t het her power, The moment she realised she wasn’t like the rest of them, that she wasn’t ‘normal’, is this what neurodiverse children feel like? Do they know they are different? Does it hurt them? Do we in turn hurt them in the way we treat them?

After Antonio gets his power, Abuela talks about how proud they are of him, and they take a family photo… only Mirabel isn’t in it, and no one realises. She is as much a part of their family as any of them, but they just don’t see it and it hurts. Its hurts from my own experience from times William is left out of things because he isn’t like everyone else. Mirabel sings ‘I’m not fine’ and she’s right. None of it is fine. She and children like William should feel happy, not just fine in places or with people they belong with.

Luisa, she is amazing! I absolutely adore her, another superb first for Disney in introducing such a physically strong female character, their marketing team however felt that she wouldn’t prove popular and chose not to produce many of her figures and merchandise… this was a mistake as her figures sold out fully leading for a big rush to produce more. Rookie mistake Disney, but you’re still making baby steps. Have faith in our kids loving good characters not just ones that society tell us are beautiful 🙄
She sings about the pressure she is under to be strong in every way as she is the big sister and has responsibilities, this resonates as a parent or sibling to a neurodiverse child. We must be strong in order to advocate for our kids, be strong for them and fight but just like Luisa sings; we hurt inside, we feel the pain and anxiety. We are nit made of steel despite our exterior or the persona we use to deal with professionals. Just like the house, the cracks start to show and then suddenly, we aren’t strong anymore which is exactly what happens with Luisa. Another sibling comparison is Isabela however it is one of resentment for the impact Mirabel has had on her would be ‘perfect’ life.

My heart broke when Abuela was yelling at Mirabel, telling her everything was her fault especially when she was the one who puts so much pressure on her family. To blame a 15-year-old child, who already knows she is different is ridiculous and downright mean! Despite this Mirabel still risks her own safety to try and save their powers, powers that she doesn’t have. She loves them despite the way they treat her, for her its unconditional. The flashback scene in which Abuela admits the mistakes she has made and stops blaming Mirabel is nice and a good way to end a kid’s film, but in real life, it doesn’t change the way they have treated her since they found out she was different. The similarity of this and the way the older generation behave around neurodiversity is strong, the lack of understanding… the ‘isn’t it a shame’ comments I have encountered.

The ending has a typical feel-good Disney feeling which I personally haven’t bought into since I was very young, when I realised that the original fairytales were much darker than the sunny versions we were shown.

The morale of the film is that all of them are special, with or without powers and that was the true miracle all along, Mirabel didn’t get a gift because life doesn’t work that way, everyone isn’t the same but that doesn’t mean that those who are different are inferior in any way. I guess it’s the morale of life, isn’t it? We are all different in our own ways and it shouldn’t matter to anyone else but sadly sometime it does 😔

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Posted in EHCP Process, Emotions

School Allocations Pt.2

I’m writing this in real time but by the time you read it, almost two weeks will have passed and hopefully I’ve composed myself although as I edit this, I doubt it…

 I feel like I have hit a roadblock, like Wiley Coyote has dropped an anvil on me… I’ve cried a lot today and when I say that I mean messy, loud angry crying. I had to take a little bit of time out of work as I broke things and shouted at nothing. The worst thing is… It hasn’t even made me feel better.

On Friday I received a reply to my monthly email chase about Williams school allocation, as you will be aware if you have read any posts previously, William is due to start school in the spring term. This is what his caseworker told me over the phone, its in his EHCP and has been a focal point of all our discussions since. I time my email after the Local Authority have their monthly meeting which is around the 15th of each month, and I usually get a generic reply in return but this time the reply stated that they will be in touch before his transition in September?! September?! SEPT-FUCKING-TEMBER!!!!

Now I want to be quite clear about this, but William’s case worker is an absolute bag of wank is quite illusive, at one point I didn’t believe he existed until he called me to tell me they had agreed that William required a specialist school… I could have kissed him, here appears this man to tell me good news and then follows it up with his EHCP, the news I had waited for, for what felt like forever. Fast forward to now and my opinion is very different. Now he’s that cunty manager that’s sends you bad emails or feedback just as they are leaving the building, we all know the type or see them on television. Out the door, shouting back ‘you need to work a double’
Richard does this, he replies to my monthly emails at 5pm on a Friday and if I have any follow up questions, I have to wait until he’s back in the office, not that he ever replies to my questions anyway 🙄

I have emailed him twice, the SEND team, left messages and have yet to hear back with any clarification, was it just a mistype in the email? Did he use the wrong generic template? I’ve emailed our SENCO and Williams nursery to garner some kind of insight into whatever is happening, and no one can help me, but all said they will try to find out. Surely it will be in William’s file somewhere about what the plan is for him transitioning into a school? I find it hard to believe that they don’t have some kind of CRM system so all parties can view notes etc.

My realisation is that if they fail to find William a place by the end of May then they have breeched the EHCP then it doesn’t give me enough time before September to take them to a tribunal. They’ve fucked us and I genuinely believe it’s on purpose, they know it would never get to court before then and they are using it to their advantage.

I have emailed several people within the SEND department now, Head of, standards officer and the review manager. I’m hoping someone can help me. If I have no responses within the next 48 hours, I will be writing to my local MP.

My anger is akin to that I felt last February, when they did something similar during the allocation process for last September 2021. I cried and broke things back then too. I’m hoping by the time that this post goes live, that I have updated it with good news or even any news at all, hence the delayed live date but I’m not feeling very hopeful.
My anger is almost painful, I feel hot and sad, hopeless, alone and scared but not surprised by it. My main source of anger is that fact that they don’t seem to care about William, they don’t care that he is missing out on education, he has nursery at the moment but from 29th March, they cannot legally keep him there. What happens after that? I work and William’s dad works, do we quit? Do we take unpaid leave? Who pays my bills? Who looks after William? Legally he needs to be in school, but they don’t seem to care. I’m back Asking myself the question…. WHY DOESN’T MY SON MATTER?!

I have had one response from anyone in the SEND team, one, singular… and it wasn’t from Richard (I’m not shocked by this in the slightest but if you still have any faith in the Local authority the please feel free to insert your own shocked face here) the email I receive wasn’t especially useful but it came through at 8.20 the evening after I sent it, I’m sure that’s not office hours so it was very appreciated. The person that replied was one of the email addresses I found on the internet and fired something off to in the hopes they could help. Sadly, they couldn’t as it wasn’t her department, but they did say they would forward on my concerns to Richard’s manager. No reply from her yet either so I’m not holding out hope.

I emailed my M.P, Karl Turner who according to other people is a community champion for his constituents. His office replied the day after my initial email stating they were going to reach out to the children’s service at Hull City Council and will be in touch with me once he has a response. Hopefully they will reply quicker to him than they do me, in fact hopefully they will reply full stop.

The whole situation just devastates me, how can Richard leave it over a week (at the time of writing this line) to reply to multiple emails, everyone else was emailed on the Tuesday and haven’t replied, how if that effective or efficient. I have always had understanding as I am fully aware that they are an understaffed and unfunded department but now my understanding has gone. I have waited patiently for them to do their jobs properly for over 2 years if not more and they have done nothing but let us down, lie to us and intentionally keep us in the dark and a week later, I am asking myself the same question as I did last week… WHY DOESN’T MY SON MATTER?!
If I was keeping William out of school there would be fines, and potentially prosecution and jail time, so who will be accountable now? Who will be in trouble for him not been in education? WHY ISNT HIS EDUCATION IMPORTANT WHEN IT’S SOMEONE ELSE’S RESPONSIBILITY?!

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Posted in Emotions

It doesn’t grow on trees

Kids are expensive!!! End of post.

Joking aside, I know all kids are expensive, but William sometimes takes the mick… He recently started eating the carpet in his bedroom 😭 Its was semi avoidable as I could rearrange his furniture to make the areas he had pulled, less accessible but he would just find more places. Fast forward a week and I now have laminate. Honestly, I question sometime if the universe thinks I’m made of money 🤷‍♀️ I work part time and run a house by myself, there is food in the cupboards, the heating is on and there is an abundance of love and cuddles when needed but that doesn’t cover some of the things I have needed to buy in a hurry, like laminate and fitting etc.

I want to talk about DLA, we all know that when I signed up for this, that I was very pessimistic about it. We didn’t need it. I could provide for William on my own. He isn’t disabled. Etc etc etc.

Below is a list of things off the top of my head in which DLA has helped us buy

  • A carpet cleaner (on to the second one)
  • Specialised bed protectors (multiple attempts and varieties)
  • Nappies (before nappy service)
  • Drinks bottles (multiple and in bulk)
  • Vitamins
  • Strollers and accessories (new, adaptive & second hand)
  • New or adaptive clothing to prevent Pica or SPD overload (multiple and in bulk)
  • Duplicating favourite toys (in case it breaks and need to swap it out asap)
  • Weighted blankets
  • Sensory lighting
  • Black out blinds
  • 6149072 chicken nuggets and counting
  • Taxis to appointments
  • Laminate flooring

Disability living allowance had made our lives so much easier financially over the last 2 years, as you can see from the above list, it has bought some random but much needed items. William, when he has access to it will smear and eat the contents of his nappy (this was before the nappy itself became his new snack) the carpet cleaner used to be out every other day… now it’s rare but still a necessity. Its difficult to know exactly what will work for William (or any child really) I found a juice bottle that William couldn’t spill but could easily drink from… it was amazing, so I bought a few. Fast forward to maybe the third or fourth batch that I bought, and they leaked all the time! Something had changed in the manufacturing process, and they were now useless to us. We then must try different bottles and try to find one that suits our needs and hope we can find more of it. We currently have 2 from ALDI that were quite expensive but holding up well 🤞
The same applies to sensory items, lets face it… anyone who has had to buy something with the words ‘sensory’, ‘adaptive’, ‘special needs’, ‘disabled’ or any thing of the like will know they tend to double the prices if not triple. There are actually companies out there that try to scam parents of special needs children by advertising such items… but that is a story for a later date.

Strollers?! Let’s not even go there about wheelchair services and how useless they are. No update since 17th November 2021, multiple emails, and calls. NO CONTACT! Whilst waiting for my referral to go through (the first time, the time it got lost in the ether) I bought a second-hand adaptive stroller which has been a godsend. It was expensive and is slowly falling apart now but it is honestly a lifeline, I had tried multiple reasonably priced strollers made for bigger children but they didn’t last 5 minuets 🙄 I have since had what I believe to my third referral to wheelchair services and now have a wheelchair sat in my office that is unsuitable for William to use… as you can tell from the lack of contact, they are in no rush to rectify it either. I think we are at a stage now where I will probably have to buy a brand new one instead. 💸

It’s a complete guessing game and changes all the time. William could wear fluffy coats which was great as I buy his clothes a year in advance (I spend a year buying the next size up so it isn’t such a hit for me when he has a growth spurt) suddenly he starts eating the coats and new ones are required that will keep him warm but that he can not eat. He was always able to wear Pj’s but now he can’t, now he takes off the pants and eats his nappy or smears its contents. I guess what will work and I’m not always right.

Last night his room was finished, flooring has been laid, walls are painted, decals are firmly stuck around the top, new bedding, lighting etc and I’m excited to see his little face when he sees it tonight. When the walls were painted, he was over the moon and his face was beautiful. His bedroom is devoid of most soft toys as he cannot have them due to fluff and been able to pull it out with his teeth, even the ones that were mine and his dads when we were younger 😢 the one thing I have found that he can have and enjoys are squishmallows, but their so bloody expensive. I managed to get a dinosaur one from ALDI which was a bargain (actually, I think it was from big nan) and he loves it. Little miss has her own for when she is here but its smaller, William has claimed this for himself when she isn’t around. I think I may have to add to his collection when I can and hopefully, they don’t become a problem too.

He does have a bed, I promise 🤣

Don’t be ashamed of claiming for DLA if you are entitled, they’re not easy forms to fill in and my first one nearly gave me a breakdown but my second was much easier and Williams renewal is in place ready for March, and it will undoubtedly be used well and on more random things that wouldn’t make sense to anyone else but make Williams life easier and safer.

All our love as always 😘, M.x

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Posted in Events & Holidays

It’s beginning to look a lot like… the end of November

Its that time of year, people have started putting their Christmas decorations up and I excitedly point them out to William hoping to see some kind of flash of recognition or magic in his eyes but there is nothing, but that doesn’t mean it will always be this way and I cling to that. This is going to be Williams fifth Christmas which means as per our tradition it will be his fifth Christmas Mickey toy and this year, I will start the tradition for Little Miss.

I was always a self-confessed scrooge; Christmas was never like it was portrayed in the movies and it always fell short of my expectations. There was no snow on the ground, we didn’t have a house full of people, all happy and playing board games. Don’t get me wrong, as a child our Christmases were magical… ‘Santa’ would fill little stockings outside our bedroom doors, and I would excitedly run into H’s bedroom. ‘he’s been!’ I would scream and the excitement would begin.
We weren’t allowed downstairs until my mom had been to pick up big nanna so we would sit on the top step waiting to hear the car pull into the driveway.
‘Santa’ always delivered except if it was something noisy… like the Christmas of 92 when H was severely disappointed at not getting a Teenage Ninja Mutant Turtles whistle. Apparently, it was sold out, but mom and dad didn’t want something so noisy in the house so got her a ball instead haha🏀

I’m a weirdo and love giving presents to people, I love thinking about what I feel people will appreciate and putting thought and love into gifts and then seeing their faces when they open them. On the flip side and this definitely makes me a hypocrite, I am a terrible person to buy for, I hate receiving gifts and being expected to open them in front of people, purely because I cannot hide my reactions… my face always gives me away. My girlfriends and I do a Secret Santa every year and I flat out refuse to open mine, mainly because on Christmas day, I don’t really have a lot to open but also so that I can do it in private. Birthdays are the same too. I am super grateful to anyone that thinks enough of me and is generous enough to buy a gift, but I like the privacy of opening them alone.

William’s Christmases aren’t like the movies, or the ones I had as a kid, but we adapt to suit the kind of Christmas he needs, and we try to make it as special for him as he can handle. Separation can be hard as it usually involves two Christmases and two birthdays, but William can only just cope with one. Thankfully me and his dad are on the same page and can make plans which suit William without it turning into an all-out war and I’m grateful for that.

Last year despite the covid restrictions, William had what I can only describe as our first peaceful Christmas; everything was done at his pace… there was no rushing and no expectations. Peace and joy for all.

My tree is not yet up as I don’t know how William will handle it due to his pica and his obsessive need to eat objects, for the last few years I’ve ran interference but it’s not getting any easier. Putting my tree up is magical to me; it’s the same tree we had as children, so it brings back many happy memories for me putting on all the old but very loved ornaments and seeing them incorporated with our own newer ones.  I think my favourite is a little green one which is half open and contains the three wise men, I mean… I think they are the tree wise men, but they are so worn that they could be miniature figures of the Bee Gees. Staying alive on my Christmas tree 😂

My stand-alone ornaments have long been abandoned and are currently sat gathering dust in my spare bedroom/office, I think I may donate them to a charity shop as I imagine they will sell this time of year and I often like to take William’s old clothes and toys in for them to be sold for a good purpose and go to a good home. I used to try and sell things on Facebook but it’s not worth it as everyone wants something for nothing whether they can afford it or not.

I guess what I really want to say to you all, is enjoy the up coming festive season in any which way you decide to celebrate it.

All my love 😘 M.x

Posted in Events & Holidays

Its our birthday! 🎈

And just like that, we turn 2 (well yesterday to be precise) 😊

It’s been a crazy 2 years, we’ve been read in 59 countries, we have 3 social media pages (links below), our story has been featured in online magazines, newspapers and other peoples blogs, there have been many ups and downs but sharing it with you all has made things so much easier and I am grateful to each and every one of our readers.

WORLD DOMINATION MAP

Here are the top 10 countries in which we are read in

  • United Kingdom 🇬🇧
  • USA 🇺🇸
  • Australia 🇦🇺
  • China 🇨🇳
  • Malta 🇲🇹
  • Ireland 🇮🇪
  • Spain 🇪🇸
  • Germany 🇩🇪
  • Canada 🇨🇦
  • Cambodia 🇰🇭

I think the best way to end our little celebratory post is to share our most popular posts in the last 2 years.

all our love 😘 M.x

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Posted in Emotions

Inclusion

Let’s talk about inclusion… as an adult, I can honestly say that I genuinely like my own company. It’s much harder to end up in an argument although not impossible. 🤣

We worry about our kids been included in the playground, getting invites for parties and things of the like but as a parent of a child with special needs inclusion is something we worry about for everything. Will I be able to navigate his adaptive stroller around that shop, do the disabled toilets have a suitable changing facility? Will that cafe or restaurant understand that he may be noisy and throw his food?

I feel uncomfortable in situations in which it is obvious that William is uncomfortable, it’s mainly because I still worry about what other people think and I’m not sure that will get go away but I hope it does.

I recently attended an event, or a gathering of sorts and I had the strangest experience, something that I have never experienced before; total all-encompassing inclusion and understanding. It sounds really strange to say this, but I have taken William to places that should have been safe for us, but they weren’t. I was terrified of doing a first new place/event, as I usually am because let’s face it, I can be the queen of anxiety and overthinking and believe me I had been doing a lot of it in the run up.  What if I William had a meltdown? What if people didn’t understand?

I panic about going to my parents or big nanna’s and they’re regular occurrences so its natural that I would panic about somewhere else, I often have my mom or my friend on a standby in case William doesn’t cope with new places or people and it’s a silly thing to think I have to do but it is just one of those things.

I guess what I am trying to say is sometimes you have to take that leap of faith, whether that is faith in a person, an event or yourself. If you’re not willing to try then how will you ever experience new things, how can you write people off as not understanding your child if you’re not giving them the opportunity to do so. In a world of people that can be judgmental and cruel, there are still people who are kind and accepting, people who include our children without trying.

Inclusion is something we all crave, whether we like to admit it or not, it can be in conversation at the dinner table, inclusion in a game of football on the park or in our case it’s the inclusion into society or inclusion into people’s lives. Its something we can take for granted when we are neurotypical, I know before having William it wasn’t something I even thought about but now the thoughts can be all consuming.

Today’s post it to simply say, think about what you are doing, think about the child that you may class as a little odd, think about birthday parties and events, think about how you would feel to be excluded, then think about how it would feel if the sole reason behind it, was because of who you were; something you have no control over.

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Posted in Emotions

The Fall Down

Autumn is my favourite seasons. The leaves change, Hull fair snacks are readily available 😋 Halloween 🎃, Bonfire night 🔥 and Christmas🎄 are right around the corner. I can almost smell the fire smoke in the air. It slowly becoming acceptable to put the heating on and to start wearing woolly tights and boots. The clocks will go back and dark cosy nights with candles, blankets and movies are just around the corner.

But then again, I hate this season in equal measures, some days it can’t decide if its summer still and its too hot but its raining and there is no physical way to be dressed appropriately and, in my opinion, it is cold and flu season…. Traditionally this falls between December and March but in my house, it always starts in the September.

In this new world in which we live, you can imagine the first thing that comes to mind when you start coughing and sneezing all over the place and genuinely looking like the walking dead 💀 I can handle being poorly, I don’t handle it well, but I handle it 😂 William being poorly is a whole different ball game. He can’t tell me what’s wrong, so it is a guessing game from the moment his behaviour changes until he develops full symptoms… is it tonsilitis? Stomach problems? The flu? The thought process gets pretty dark… what if its measles? Did I see spots? What if its Corona? Or Ebola? Or the plague? Or maybe, just maybe, it’s just a common cold.

I know my reasoning is pretty extreme, but my point is that it’s just never possible to tell what is causing the issue until the issue itself become apparent. William reacts to many situations by shutting down, this means he will withdraw from almost everything, he will barely eat and will try to sleep for avoidance. This could be because he doesn’t want to do something like leave the house or partake in a certain activity but could also be because I had to trim his nails, stopped him eating carpet fibres or didn’t let him smear the contents of his nappy. In some instance it’s because he doesn’t feel well. How do we know the difference? There is one simple answer… we don’t!

Its purely a guessing game… I have to evaluate everything that has happened prior to his shutdown and try to figure out. This means I have to be ultra-conscious of what happens on a day to basis and must be switched on at all times. This still means I have to try isolate what could be the problem and act appropriately, if in fact any action is necessary. On some occasions, no matter how much I analyse what has happened, I get it wrong and its simply because he is coming down with something but with no prevalent symptoms, it is impossible to know until it fully hits him.

I’m not going lie, sometimes it’s exhausting and sometimes when he cries, I cry but that’s ok because it doesn’t mean I’m a bad mom or a failure. It means I am trying my best and that’s all we as parents can hope for.

Despite this I do love Fall just not the downs that come with it 🍂 xx

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Posted in Brief updates

Last night they heard the screaming

Then a silence that chilled my soul.
The type of silence that comes when the tears dont stop but you can’t breathe enough to make noise… I know this song is about domestic violence but I felt it was an accurate (even though edited) lyric to describe my emotions yesterday.

I’m not sure if I mentioned this previous but I had invoked my right of access in accordance with the GDPR act 2018, requesting the local authority send me all information in relation to educational matters for William… if anyone reading this is going through something similar; I have an amazing template that another mom sent me 🙂

Lets just throw out there that I have had an amazing week in relation to William, he was at his dads so I had chance to plan my next venture into decorating but I received Williams blue badge which give us the right to park in a disabled bay (I don’t drive but will come in very handy when we are in someone else’s car) and I spoke to the nursery who have advised I no longer have to pay for William to attend and only pay for his meals, well I am in credit so I won’t have to pay anything right up until he leaves next Easter.

The right of access is also known as a subject access request was received today, and it’s made me so angry and upset that I needed to lock myself in the bathroom (The MR was here and he isn’t ready to see this side of me yet or maybe I’m just not ready to show him🤨) but I angry cried, you know the type; loud and messy. Smacking my fists on the floor feeling like my rage would destroy the concrete and not my hands. My neighbours must have heard me and I’m pretty sure I made noises only dogs could hear but I needed to let it out but I was so worked up that I couldn’t breathe and the angry tears became silent ones that I had even less control over.
The reason I had done a S.A.R was to catch them out in lies to back up the potential tribunal but I didn’t realise that it would reopen old wounds 🤕

I remember special school allocations like it was yesterday, it was another couldn’t breathe moment. It was February 15th. check out the post School allocations, if you cant remember.
July 2020 we were told he was going to considered for place… There isn’t a single document in the full S.A.R relating to any conversations in regard to this! not one! meaning that when I said the whole thing was all fucking lies, I was in fact correct. It was all fucking lies!

There are lots of missing sections, specifically relating to meetings, discussions and referrals in which I took our senco’s word for and apparently haven’t happened. I believe there is another child’s information in there too (How many times is the L.A going to breech GDPR? actually don’t answer that since they are still referring to the 1998 DPA act in their emails)

I’m angry at myself for being so upset, especially when its just confirming what I already knew, I only wanted the documentation to back up my claims with the solicitor and hadn’t even considered how it would make me feel 🙄

There was something else in there that I have great concern with but am awaiting clarification on its meaning before I comment on it but if what I think I am reading is correct then the whole fucking authority is morally wrong and incapable of putting children above themselves.

Stay tuned in by subscribing so you don’t miss out on the instalment of ‘how the local authority fuck us over’

Much love, M.x

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