Posted in Brief updates

Hit the Deck

This post is a little out of character for me but it’s about my relationship, have you ever just had a moment in which you realise that your feelings are right. I’ve known for quite some time that I love L and Little Miss and I’ve not kept that a secret from anyone but today something happened which solidified that and made me think that maybe my choice in men isn’t as terrible as my decree absolute would suggest 🤣

Although Thursdays are traditionally days L & I bring our families together for a playdate, we have had one today which is a Friday and since both kids have previously been under the weather, we opted to stay inside but go out at the same time. We went to The Deep. If you haven’t been then you need to, especially if you are in Hull or the surrounding areas as 1 admission price gets you in for the full year. This will definitely give us something to do on rainy Thursdays going forward.

I like The Deep in general, I think the year long ticket is incredible value if you go more than once. Under 3’s go for free which saved us money in regard to Little Miss but for 2 adults and one child, there wasn’t much change from £50. So I will say it again (for the cheap seats in the back) go more than once!

The last time that I took William to the deep, he was about a year old and in a pram. Today I opted not to take the Maclaren, it’s a risk as it means if he refused to walk, I would have to carry him all the way around but I wanted him to be able to get up close with the exhibits and engage with them and he did so I am so pleased that I took that risk. Ooh another big bonus for The Deep is that blue badge holders park for free!

The kids pretty much did their own thing, leading L and I in different directions and enjoying the fish, the colours and the bright lights but they came together and sat nicely watching some fish and I had this little flash of them growing up together and remembering these random days out.

There was a medical incident in which the exit was blocked off, if you’ve been before, it was the tunnel you walk through on the way to the stairs and lift. This mean that the final area (where the soft play used to be) turned into a bottle neck. Lots of people, means lots of noise. It was warm and there was little communication from staff meaning no one really knew what was going on. As a natural worrier, I was a little freaked out about the many more people making their way through to that area but my feelings were not as bad as Williams. I could articulate mine and make myself feel better but William couldn’t and he became quite distressed. Once we made it out and near the main elevators, William had become so overwhelmed that he laid on the floor in a meltdown. As Williams Mom, I think nothing of dropping to the floor with him, stroking his head and telling him that he’s ok and i’m here. I’ve even sang to him in front of people and believe me, I am tone deaf… but we do what is right for our kids.
Without a second hesitation L & little miss got on the floor next to us and comfort William until he is ready to get up. People stared and probably passed judgement without understanding but in that moment, we all sat on the dirty floor and let people walk around us. I would have always been there but L & little miss chose to be there… Now that’s a whole new level of love 💕

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Posted in Brief updates, EHCP Process

Shortest post ever

I’m crying, everybody is crying and for once its good news!

William has been accepted into my first-choice specialist school!! 🙌🏼😃🏫🤪💪🏼

I feel this wave of relief, I feel like tonight I can sleep better knowing that the end is in sight, we are not in limbo anymore and he has a school that will suit his needs.

His start date is September, and I don’t know what will happen once he finishes nursery in March as we all know that he is entitled to an education from then and the goal was for the Local Authority to secure a place for the spring term but that’s not happened but at least I know that something is happening and a timeframe for the first time in years, I have a review meeting soon with our Senco and hopefully it will discuss what will be in place until September, so I will keep you posted on that, but the main thing is that he has a school!

L and I are going to celebrate and have a glass (or two) of fizz 🍾🥂

Much Love 🥰, M. x

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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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