What’s Happening Now…

Posted in Appointments

Precautionary

Poorly kids are the worst! 😭 Actually, I take that back… a 7 and a half hour wait in our local children’s A&E is the worst.

William hasn’t been feeling well since the end of February when he got his first (of many) cases for tonsillitis. Antibiotics didn’t clear it after the first dose finished so 5 days later we were back at doctors for a second dose. 3 days after the second dose ended he was still poorly so on Monday his dad and I took him back to the doctors (I feel like we’ve seen them that much recently that they’re going to invite us round for dinner at Christmas 😳) the doctor said he was fine but tonsils still a bit sore but no longer infected, the give him pain relief and he would be fine.

Fast forward to Friday and I have to take him to chemist as he has conjunctivitis because let’s be honest, it never rains, its pours 🌧 Drops received and starting to be administered, let bare in mind that my shoulder has gone again so I’m fine this one handed… its not easy even with two hands. Friday evening William was lethargic, hot to touch and clingy and he had barely eaten or drank all day…Not to mention the waterfall of slimy vomit that came out of his mouth and all over me. Honestly it’s like my kid aims for me when he’s sick 😫

Like any parent I was worried and ring my own mom for advice and then rang 111 who told me to take him into A&E as soon as possible as a precaution. Luckily I have some amazing friends who are used to being on standby when it comes to getting William places in a hurry.

We arrived at A&E at 8.15pm. It was busy, super busy. Kids were screaming, adults were moaning really loudly about how long they had been waiting etc. One parent told me it was going to be a 5 hours wait… she was wrong 😭

I want to talk about the waiting room, firstly the chairs are not built for 7 and a half hour waits with a gimpy arm. But that’s not my gripe… my issue is how unfriendly the waiting room is for a child like William. The lights are super bright and loud, some of them were flickering.the waiting room is busy with colour. Lots of different colours and sparkly fish hanging from the ceiling and the air con is loud. For an autistic child with sensory processing disorder that is a lot to take in for a lengthy period of time. It’s a difficult wait for most children but I’m sure other towns have sensory rooms for children like William. I’m almost sure the eye hospital next door has one or were at least trying to raise funds for one. It was also a nightmare that only one person could accompany each child, I understand that there is a limit on space but William needs to be restrained to be examined and unfortunately its not ideal with two arms let alone one.

Anyway that’s my moan over… the nurses who triaged us were brilliant. So patient with William and understanding. The doctor we saw was also amazing. Thankfully William just has a viral infection which will pass with calpol and time and even though the wait was long and painful I’m glad we went. I’m glad I made the 111 call and followed their advice because really you just never know with any child what is wrong but when they can’t tell you, it’s so much worse.

Hopefully he will be better soon and can enjoy his last 2 days of nursery next week. 🤞

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Posted in Emotions

The green eyed monster

I want to talk about the green-eyed monster, you know that devil that sits it the back of our minds, whispering in the back of our heads sending us all into a tailspin. I’ve touched on this subject a few times in relation to the unspoken competition between parents about how well their kids are developing, how soon they talk, walk or progress.

Today I want to talk about it in general not just in relation to parenthood but everyday life, I also want to open up about some of the things I do that may cause the green-eyed monster to pop up in other people. We all encounter moments in which we want what someone else has or we think someone wants what we have. Jealousy is natural in some degrees but to some it is all consuming, there are some that don’t understand that it is just a voice in their heads.

We all experience it, I for one really struggled with it when William was a baby; I unfollowed my friends on social media who had babies at the same time because I was jealous, and it hurt to see their babies developing at a quicker rate than William. It took a long time for me to be able to be happy for those parents instead of envious. Even now sometimes I comment and say how wonderful things are, how beautiful, how smart etc but my head still occasionally says, ‘why not me?’
A few years ago that thought would consume me, and I would scroll through social media pages and sob about how unfair life was, but I have grown since then and now I can be genuinely happy for my friends, but it doesn’t stop the pangs of jealousy. Seeing Little Miss grow so quickly and overtake William in the year I have known her has been hard, seeing her ask for her Mama and ask for ‘Big hugs’ from her Daddy is a wonderful thing to witness but there is a deep sadness there for me. I guess I just want those moments for myself. We always want more than we have, its natural… The moment William said ‘Mom’ for the first time was one of the best moments of my life but now I want more. He made a noise at bedtime a few weeks ago that sounded like ‘I love you’ but it wasn’t words, just sounds but now I’m desperately hoping for an ‘I love you mom’ but it may not happen, but I ache for it, dream of it, even long for it. William surprises me every single day and in the last two years had come on so far with his development so I’m not saying it will never happen, but we just don’t know what he is capable of until he actually does it.

I got jealous when other parents of children like William were given school places and William wasn’t… I was happy for them and cried happy tears but fuck me, it hurt at the same time. I think that’s natural though. Jealousy didn’t mean I wasn’t ridiculously happy for them because I truly was. I called my mom and told her every time other parents got good news, ‘mom this happened, hopefully it will be us next’ and then when it was our turn, I expect those that come after us will be the same. We want the best for our children, and as happy as we are when others get that first, we long for it to be our turn and feel that in the parents that are fighting for their kids’ educational needs right now. The system is not designed to help our children or to get them what is right for them, it is designed for what is right for the local authorities behind the system.

Money is a big factor of jealousy for a lot of people, and I am not ashamed to say that I don’t have a lot of it, I work part-time, I’m paid well, and I absolutely love my job but due to being part-time, it means I have to plan my money very well. I have to think about what’s coming in the upcoming month and budget appropriately. I can’t just decide to go out or to buy something without thinking about it a month or more in advance.
I love my house and everything in it but that didn’t just happen, I wasn’t always living on my own. As we all know, 2 years ago I was married and in a 2-income household which had a big part in building up my house into a home for William. Credit where credit is due, William’s dad left the house as it was so there was least disruption to our son, I didn’t give him a great deal of choice which may have been selfish of me, but I wouldn’t have the nice things I do if it wasn’t for him, and I am grateful for that. There are things that people may wonder how I can afford on my wages, but I know the price of everything and when I need something, I budget for it as best I can with help from my parents if needed. I have a large television, which is completely wasted on me only watching BabyTV and Coronation Street, but it is something I would never have bought myself. It was a Christmas gift from my parents a fair few years ago and something I have made sure to take very good care of.
William has more toys than most children, I bought in excess for his birthday (I had been stockpiling gifts since mid-2021) not because I have money to waste or an excess of it but because I don’t know what will work for him. Two gifts have already gone in the bin because they have been broken, one on his actual birthday 😫 and I anticipate that many more will go to landfill in the following weeks. Don’t get me wrong I usually try to donate where I can but if they’re broken it’s not possible. The toys that hold William’s interest are usually aimed at younger children, but it is what must be bought to match Williams developmental age, but they are not built to withstand the strength of his actual age. Some toys won’t be played with for months, if at all and it’s a risk I take when buying anything… so there tends to be a large choice for him so that he has at least one gift he loves. I threw a small party for his birthday and that needed budgeting for well in advance. It wasn’t me showing off, look at what I have or what I can do… it was me saying that William deserves to have something nice and why can’t we celebrate his birthday like other children do? I paid for a cake which was divine and a bargain but the money for that came from my January wages, I paid for a Morrisons buffet; the deposit came from February’s wages and the balance from this months. Every step of his mini party was carefully budgeted and planned out.

Christmas is another thing in which people may think I go overboard, but again I plan Christmas all year round… I am lucky enough to have a spare room, this is now what I class as my office but really it’s a dumping ground, there is a freezer which holds copious amount of chicken nuggets for William, a tumble dryer which physically wont fit in my kitchen so is next to my desk with a vent out the window, meaning my office is always cold but there is no point in turning the radiator on as it would be huge waste of money. I often work in a jacket, or a dressing grown as it can be pretty nippy in winter. There are two sets of industrial shelves which hold Christmas decorations (I can’t access my loft) and throughout the year I buy Christmas presents which live on them until December, or birthday gifts months in advance… a little bit at time so it has the least financial impact, before I had William, I used to buy everything out of December or Novembers pay and then struggle to afford bus fair to work until February 🤣 I was always the kind of person who lived like a king 👑 for the week after payday and homeless for the rest of the month.

I have been to people’s houses or seen pictures on Facebook and thought God I wish I could do that or have that or go there, we all do it, but we all handle it differently.

The reason I have been so honest about what I have and why is because I would never want anyone to look at me through green eyes when there is no reason to in my opinion. We each manage what little money we have differently, and all have different circumstances.

I’ve never been a massively jealous person when it comes to relationships, this is probably why I didn’t realise my ex was having an affair 🤣 as a person who has more male friends than female, I would never hold someone to different standard than I hold myself but that doesn’t mean I don’t occasionally get a little worked up over daft things. That there isn’t a voice in my head going ‘what if…?’ but I think that’s natural of all of us. Its part of being human but so is being able to trust people. Its hard to get out of a mindset in which you think everyone will hurt you but it’s imperative to do so in order to move on in a healthy way. People do shitty things and we cant stop that; we aren’t able to stop other peoples actions but we can learn from them without the result of those actions consuming us.

I used to have only child syndrome, despite having a sister haha 😳… What is mine is mine and that’s the end of it but as I have grown up, my opinion on things has changed massively. If I have something and someone needs it or wants to borrow it, then I see no issue in helping them out. (Partners not included 😂)

Social media is the devil, its so easy to post a picture and pretend to the world that your life is perfect, you can filter yourself and crop out the cracks in relationships, the mess in your house and the worries you feel when you look at your child. There is no shame in being honest and again I think I have said this before but fuck you Mrs Hinch for making me feel bad about my messy house, fuck you Kardashians for photo shopping your bodies to a ridiculous and near on impossible standards, as crazy as reality TV is, I give huge credit to the stars of Geordie Shore and reality shows of the like… not because of the surgery they keep having to meet the standards they feel they should but for portraying themselves in a realistic way. They get drunk and messy and wake up looking rough with last nights make up on… I don’t even watch the show, but I have seen clips and newspaper headlines trying to shame them, but we all do it! We all forget to take off make up before bed, we wake up looking like we’ve ran an obstacle course in our sleep. I hate the unrealistic nature of things online… Don’t get me wrong, I love a snap chat filter, but I also know its fake and I think that’s the struggle a lot of us fail to understand sometimes. We shouldn’t be jealous of something that’s not real, we shouldn’t aspire to be like these people who pretend to be what they are not!

My green-eyed monster rears it head less often than it used to but its still there and its part and parcel of being human, of being who I am and I’m not ashamed of that and nor should I be.💚

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Posted in Brief updates, Emotions

Calling all lazy parents

I would like to take a moment to state that I do not always want to play with my child. I sometimes can not go through the same set of flashcards for the 500th time I’m a day.

We all have moments in which we check our watch and realise bed time is a long way off. This doesn’t make us bad parents, it makes us tired parents. It makes us human.

Becoming a mom or dad doesn’t make us super human. It doesn’t change the fact that we crave time that’s ours and ours alone. That soak in the bath which involves candles, a book and enough time to shave both legs 🦵 time which doesn’t involve accidentally sitting on a rubber duck.

We want to watch TV or a movie that doesn’t involve animation or singing. I would like to have a power ballad stuck in my head instead of nursery rhymes.

There is no shame in needing a little time out. We can not always be on it 100% of the time and its important to try and take that time when we can, so we don’t burn out.

I remember thinking that my kid would have limited screen time… that didn’t happen. It is I who ended up with limited screen time 🤣 I can’t remember when I last watched Corrie when it actually aired instead of days later. I gave up completely on the other soaps as there just aren’t enough free hours in a day.

I work part time and absolutely adore my job. It gives me something to focus on that isn’t being Williams mom and I need that but I admire those full time workers and full time parents. I choose to work and if someone chooses not to then that is their business. There is a lit of stigma around parents that work and parents that don’t. There seems to be no happy medium. There is a archaic kind of judgement that working parents should be home raising and looking after their kids but then a judgement against those that choose to stay at home about how they should be working. I feel like non of us can win!

So this post is dedicated to the parents who aren’t ashamed to say that some days they only give 99%. The ones who don’t want to listen to the same song for the millionth time. Who pretend peppa pig goes to bed at 5pm. The ones who pretend toys are broken but have secretly take the batteries out 🔋 enjoy that 1% of time you need for yourself because you deserve it. You deserve to shave both legs, to wash all the conditioner out of your hair and to not have to hide in the kitchen when you want to eat a whole chocolate bar!

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Posted in Appointments, Brief updates

Wheelchair services

It’s been almost 2 years in the making but today, Williams new adaptive stroller finally arrived.

If I start from the beginning, we asked for a referral via our health visitor who put the request through our doctors. Who lost it after a year despite me chasing it repeatedly 🙄

A second referral was put through after weeks of chasing our doctor… apparently there is only 1 doctor for everyone in Hull or at least that’s how CHCP make me feel.

Let’s just point out that in this time he had fully outgrown a standard stroller and I had purchased a second hand adaptive Maclaren Major Elite stroller specifically designed for children from 6 months to approximately 8 years. It was expensive but worth it and William was comfortable and safe. It wasn’t going to last us forever but would do until we got sorted because let’s remember, covid fucked us in regard to appointments and referrals for the last 2 years.

The actual appointment with wheelchair service came much later, in fact it was October last year. Williams dad took him and he was assessed by a clinician, a clinician who decided that a Maclaren chair wasn’t suitable and he wouldn’t issue one for us but would look at a PWB which is a personal wheelchair budget and we could potentially gets a different stroller as long as its deemed suitable. Brilliant!

Fast forward 2 weeks and there is a fucking wheelchair sat in my hallway!

The delivery guy came and I turned him away. This wasn’t right for my son. We had discussed the issues with a wheelchair like this, in ridiculous depth with the PWB worker but she sent the chair back and I was forced to accept it. It just took up space in my already crowded office.

They all agreed it wasn’t suitable for Williams need so why was it sent? Why would they not collect it claiming it would leave William without suitable provision. That whole scenario was just mind numbing. How could a self propelled wheelchair be suitable for William? There was exposed velcro which would cause him sensory problems. Plus many many more issues including hygiene and safety with William being able to access the wheels.

The woman who dealt with us said she was referring it back to a clinician to get us a Tendercare Snazzi stroller but then she left NRS and it was handed over to someone different. The gent who took over ignored all calls and emails and only came back to me after I went on social media and Trustpilot publicly shaming them for failing to assist my son. Then he was suddenly able to reply to my multitude of emails.

Suddenly a Maclaren was suitable but they couldn’t provide one due to stocking issues but they can offer me the Tendercare Snazzi. I immediately accepted it and queried when delivery would take place and collection of the chair. I felt the Snazzi was suitable for his needs and that’s all that mattered.

But wait…

The Snazzi is out of stock 🤔 but they can offer me an off brand Maclaren knockoff or a Tendercare Snappi. The PWB guy told me to take the knockoff as similar to what we asked for… you know the one they were telling me wasn’t suitable for my 4 year old but designed for much younger 🙄 Needless to say I declined this option and went for the Snappi.

And based on his face… I made the right decision.

It’s been a long wait and it’s been worth it in the end but there shouldn’t have been a such a wait at all. There are so many failings in the NHS in regard to referrals themselves and again with services such as NRS. I hope they take my trustpilot review on board and look into what went wrong so that no one else goes through the heartache of chasing a service or even just replies that aren’t coming.

Apologies for spelling and grammar etc but I’ve wrote this one on my mobile 🤣

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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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