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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Posted in autism and covid19, Emotions

There is an App for that…

Is it just me or is being a mom lonely? Is being a mom to a child with special needs even more lonely? Is being a single mom lonely? Or are we all just lonely and on our own different journeys?

At the time I wrote this post (or the scribbles that eventually become a post) in my trusty little blue notebook, I think it may have been the beginning of last year and then I’ve wrote some recently because some of it as usual makes no sense but at one point, I wrote a little list about things that occupy my mind when I can’t sleep which aren’t really valid now.

  • When did someone last hug me?
  • When did William last see so and so? Will he remember them?
  • When can I go somewhere without a lateral flow and PPE?
  • Will I ever need to get fully dressed for work again? (Jokes… I’m on camera 🎥)

I have the answers to all these now but obviously when I wrote them, the tear splashes on the page indicate how upset I was. Especially since number one was about hugs 🤣 and I am notoriously not a hugger. The 2m rule was a huge bonus for me!

 I’m not sure if its Covid and its many strands and the scare mongering that comes with it, but I seem to have become a little very reclusive despite restrictions being lifted. I find reasons not to do things or subconsciously put obstacles in the way.

Covid genuinely frightens me, I was first in line for the vaccines and the subsequent booster. ‘Yes please, inject me with that 5g tracker’ 🤣 each to their own and no judgement for those that have chosen not to but personally I believe that if you haven’t lost someone in the pandemic then you maybe don’t understand its devastating effects and that you are lucky, if in fact anyone can be lucky in such uncertain times. I question if this uncertainty will ever end, if covid will ever fully go away or we can just live with it, but my internal pessimist doesn’t think it will. This is our new normal and not to misquote Shane Meadows but This is England 22! 🏴󠁧󠁢󠁥󠁮󠁧󠁿

Every keeps talking about not been able to hide away forever and not been able to live with restrictions but I seem to be quite content being locked away in my home but I don’t think that’s a good thing, it’s a bit like I have Stockholm syndrome but to myself 🤪 Don’t get me wrong, I leave the house and see people and do social things but not like I used to, maybe its because I work from home and socialisation takes much more effort now, whereas before it was as simple as walking across the road from work and having a cheeky pint and a carvery. Maybe its because I’m a single co-parent now so I can’t just do things at the drop of a hat, it must fit in with work and William’s visitation with his dad and can require military preparation whether it is with or without William.

Everything can so easily be done over the phone or a computer now, what’s happening in the world? You can find out on your phone. What boxset should I binge watch now? Ask Google or check the Netflix rankings. Missing friends or family? Video calls via Facebook or WhatsApp. Need to work from home? There’s Microsoft Teams or Zoom for that. Doctors’ appointments? There’s an app for that (which is much quicker at giving appointments than my actual doctor) Meetings for William? All done remotely. Except for seeing Big Nanna, I would walk through a plague of Zombies for that! 🧟‍♀️

I’m not saying I never leave the house as I obviously do but its so easy not to. Everything is online now, I even met my boyfriend L on Tinder, highly recommended. Him (most the time 🤣) not the actual app, the app is like a meat market but more for fish, catfish that is… it passed some time during lockdown before restrictions were lifted and it was entertaining even though I lost all faith in humanity, some people seemed normal and then BAM! Flat earthers, criminal records, married men, women pretending to be men, couples looking for a third??? And that’s only a small fraction of the people I spoke to. What the actual fuck! I was on the verge of giving in when L messaged me. He seemed so normal, but my replies were terrible as I was expecting him to be a mental case or to try and convert me to scientology or something, how we formed a relationship, I will never know 🤷‍♀️ I think I would give the app about a 2.5 out of 10 but that’s purely down to L💕 don’t even get me started on POF or the mommy friends site peanut 🙄

I guess I bring on some of the loneliness myself, whether its social anxiety, pandemic panic or just laziness. Let’s face it I have explained previously about some of my anxieties around playdates and the like. I love my own company and I very rarely argue with myself 🤣

I was never really a visitor; I prefer people to come to me but then also freak out about people coming in my house and finding things to judge me on.

This is probably the worst analogy ever, but Covid is a little like those adverts you used to see on late night Channel 4 before Eurotrash aired… the ones about sexually transmitted disease.
You’ve slept with Anna, she has slept with John, Jamie, Jack and Steve, therefore you have slept with them too. You kind of have to think that like when it comes to contact with people who’ve had Covid… If I’m seeing so and so for a coffee then I must think about who that person has seen before me and where they have been and so on, its never ending and exhausting 🥱 having your mind working that hard when it already feels maxed out navigating day to day life is simply not possible.

I’m not really sure what the point to this little rant was, I’m lonely, I’m not lonely, there’s an app for everything and Covid is the new STI 🤷🏼‍♀️

Much love 😘 M. x

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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 EHCP Process, Emotions

Underfunded or poor use of funds?

I want to start this post by saying that for the first time in a very long time, I am writing this on my mobile so be prepared for more spelling mistakes than normal. Part of my process is to sit at my laptop and write… I don’t know why. It makes my thoughts feel more official and organised and when I’m on my phone it feels like I’m just ranting to my friends via message but maybe that isn’t a bad thing so here goes nothing.

I spoke to another parent today who’s child seems neutologically very similar to William. This family are having to take the local authority to court to ensure their child’s needs are met and it made me think about how many other parents are going through this right now. Thankfully I didn’t have to go to court but we are still schoolless. How many children of school age are without adequate education? How many children are stuck with inadequate education?

How can the local authority knowing do this? Spend funds that could help our children on fighting parents who just want the best or at least the bare minimum for their children? Or do we pay for that in our taxes? The money spent on fighting parents could get more children into the right schools, the right level of 1 to 1 support. I am a firm believer that the SEND departments are massively under funded and when my solicitor asked if I wanted to persue compensation, I firmly said no. Why would I want to take money from an already underfunded department? But what are they doing with the funds they have? Are they using it in the best way possible? I don’t think so! 💸

I’m worried about whats to come for us as it gets closer and closer to William’s loose start date of April/May. What If they name a school that isn’t suitable for William? I won’t send William to just any school. I have to be sure  it will meet his needs, I have one in mind but would happily accept a suitable substitute but what if they don’t offer one. William will be schoolless and too old to continue to attend nursery and thats a real fear I have. I could attempt to home school him and although I would give it a bloody good go, I don’t have the resources available to me nor any idea where to start. We try educational play with alphabet and numerical flashcards and use many sensory items but it’s not the same as school and I’m not cut out to be a teacher and these are pivotal years of his education. I chase our caseworker every month after the monthly allocation meeting to be met with the same replies. ‘No update yet, we will be in touch when there is’ I’m worried about the transition time and if there will even be any. 🤷🏼‍♀️ Both myself and Williams dad may need to take time off work but we can’t prepare until the local authority let us know more details and as someone who needs a list to organise her lists, the lack of being able to prepare weighs heavy on me and my mental health. Some days the panic takes over and all I can focus on is what I don’t know like how much school uniform is going to cost me, will William be able to scope wearing it? How will he get to school? No one will discuss transport with me until he has a named school but what time would it come? Will Williams dad need to be here whilst I work to hand him over? Do I need to provide a car sear? What if it doesn’t arrive? Will he be on a bus or with a PA? I should be happy because I’m in a much better situation than other parents but I’m not. I won’t be until William is settled in a school that can meet his needs

I re-read my post from February last year, school allocations. It broke my heart all over again… almost as if I was sat in the bath receiving that phone call from Elaine to tell me William wasn’t even on the list of allocations all over again. This was the day I genuinely didn’t think I could keep fighting. Couldn’t keep getting knocked down. The 15th February 2021 and I just wanted to stay down. I shouted and cried and broke things! Why wasn’t my kid important? Why didn’t we matter? It took me a while but I got up and I fought, with alot of help and advice 🥰 and we actually got somewhere. Not where we we want to be but almost there.

I almost let them bully me into sending William to a school I knew couldn’t meet his needs. I even met head teachers who were non committal about whether they could or couldb’t support him. They expected me to name them on his EHCP without a commitment and thankfully I just couldn’t do it. The local authority expected me to and pushed me to, making me believe it was the only option for us. That’s not right, that’s not ethical and it was most definitely not what was right for William but it was what the local authority deemed right for them. They should have been putting William first from the moment he was on their radar but they didn’t.

I received a SAR in regard to Williams education and when I looked through it, it broke my heart. Not once did it refer to Williams best interests and meeting his needs, only after the point I gained legal representation did they seem to change their agenda and that’s wrong! Some parents can’t afford legal help or aren’t entitled to legal aid, it shouldn’t come down to money in order to get our children the educational they deserve! The education they need and are entitled to!

I recently read the ofsted report on the Hull services from December 2019 and its a damning read. Here are a few highlights or more accurately lowlights…

There was too little involvement of families in decision making about the services and support they need and insufficient awareness of the resources and support available to them in the local area.

There was poor self-evaluation of service quality and insufficiently focused improvement planning to facilitate better provision and outcomes for children and young people with SEND.

There was a lack of an effective strategy for jointly commissioning services across education, health and social care.

Here’s the full report if you wish to read it.

As always I will keep you all updated with our journey to education but if any of you have your own stories you wish to share please reach out either via our social media pages or our reach out page.

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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

It’ll be lonely this Christmas 🎄

Any of you that have read past posts will be aware that I love and hate Christmas, there is no inbetween for me, I love time off work, spending time with the Hobman clan, giving presents, having copious amounts of chocolate in the house and even my dad making the same jokes he’s made for the last 10 years… (Kaylee and her heelies – they lasted 5 whole minutes…. up and down the drive once, where all the rubbish will go and how we would each have to take some home and the fact my mom’s turkey is dry) I’m honestly surprised that my mom hasn’t chinned him.🤣

I was genuinely looking forward to this Christmas, last Christmas our family was separated due to the government restrictions just like many others across the world, so it made this Christmas that bit more special. There are four generations of us: big nanna, my mom and dad, me and H and then William and Kaylee.

Williams letter from the fat man 🎅

Everything was planned to the finest detail, William would spend Christmas eve with his dad, come home for bedtime, read his letter from Father Christmas and his usual Santa book ‘Santa comes to Hull’.

As you can see, it’s been a tradition since the year he was born. x

I always sneak in a cheeky reading of ‘the night before Christmas’ as its my guilty pleasure. Christmas day, we would try to take things at William pace, I would be dressed and ready before he woke up, breakfast and then gifts before letting him chill out and finally setting off to my parents for lunch and family time… but that didn’t happen.

What do you do when your sons dad messages you saying he’s got covid and its Christmas eve and he’s got your son? Again, I shouldn’t have to say it, but this isn’t a post in which I slate William’s dad. Although when I read that message, there were a few expletives running round my head purely because of the ramifications of his message but I wish him no harm and hope that he and his girlfriend recover quickly, mainly because I need childcare for when I go back to work in January (Jokes 🤣)

After having a cry and getting angry, I made the decision to stay home with William in order to protect my loved ones. My family are all vaccinated and boosted but I just couldn’t take the risk, especially with big nanna. I would never have forgiven myself if she caught it from us.

William and I have been doing lateral flows each morning and so far, both have come back negative and hopefully they stay that way but I will keep you posted. 🤞 I’m not going to lie, it was a really difficult decision to make, not only did it mean I couldn’t be with my family on Christmas, but it also meant I couldn’t spend Christmas eve with L. Our first Christmas together and we couldn’t see each other until late Christmas night so that he could reduce the risk for family too.

I think Mud had it right when they said ‘It’ll be lonely this Christmas’ because it really was… William seemed to have a great day though. We opened presents, ate chocolates, and generally made a mess of my very clean house (only because I was manic cleaning Christmas eve as if Santa was a house inspector🧼)
William was a little overwhelmed as there were new things in the living room but because there was no panic or rush to be out the door, he could just take things at his own pace and seemed to enjoy exploring his new things. We even had all the presents open before lunch, except for the ones L brought on the evening.

I’m sure I said this last year but next Christmas is going to be the best one yet… At least I hope so x

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Posted in Events & Holidays

Autism Night Before Christmas – by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…
But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity
He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned……

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