Posted in school

26/04/2022

I would like to take this opportunity to apologise for the fact I haven’t written a post in a while but last week was a big week for us and a very emotional one. I felt that it wasn’t the right time to do any kind of writing so that I could process that William had finally gone to school.

I had been very honest about how I was feeling in relation to William going to school and had taken some time off to come to terms with this big adjustment and to be there for William every step of the way.

I’ll kick this off by sharing some photos of his first day, we came together as a family (as we should) to be there for William on his first day, I think it was more of a big deal to us than it was William.

26/04/2022
26/04/2022
26/04/2022
Proud mommy – 26/04/2022
William and his daddy- 26/04/2022

William was an absolute superstar, he was so excited to get on the bus and start his educational journey. He loves travelling so choosing to send him on transport was most definitely the right option… well the only option since I don’t drive myself (although driving lessons are now booked 😬🚘) but even when I do, or if I do, I think I will still send him on the bus as he’s made a friend and it’s so good for him to have that 1 on 1 social interaction although today he did get moved this week because he was eating the little boys coat 🤣 Pica at its finest.

I’m not going to lie and say I wasn’t a mess on his first day, second day and so on but seeing his face as he got on the bus was so fulfilling that I genuinely forgot about all my own fears and doubts, my own insecurities just fizzled a little. His face, full of confidence and joy made me feel worthwhile as a mother. I have done a bloody good job so far and now his teachers can continue with his education and help him develop and I will continue to help turn him into the lovely little boy he is and the amazing man he will grow to be.

I’m sat here at 11.47am on a Thursday, my house is clean and I have the time to sit and write this, watch some TV and just breathe… it’s an odd feeling but not the horrendous one I thought it would be. I’m not breaking down or feeling sorry for myself. My little boy is growing up and starting a journey in which he should have started last year. its hard when he doesn’t want to get off the bus on a night because i have this little voice that goes ‘he doesn’t need you now’ but that’s not true. We always need our parents. I’m in my thirties and still need my mom to tell me everything will be ok. William needs me, just not as much as he did before but i’m ok with that… we need to let our kids go so that they can fly and he is doing that.

We have this whole new support network in his teachers and his passengers assistant on the bus who is amazing and so lovely. She called me a few times the first week to let me know how he was on the bus as she saw I was upset. His teachers email me updates and there is an app in which they upload photos and comments. They have their first parents opening soon for the queen’s jubilee in which they will do a parade around the school, sadly I can’t attend but Williams dad will be going to support him.

I’m excited and nervous to see how school will help him develop but it’s a whole new chapter and i’m excited to start sharing it with you all. Much love, M. xx

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in Emotions

The anatomy of a post

Its easier for me to write down how I am feeling, than it is for me to say it… I feel that by writing it down I am saying it as it needs to be said. No immediate questions and no way I can get tongue tied (although I do get a bit ranty) but I do understand that this sometimes leaves me a bit closed off as a person and that can make me hard work especially for those closest to me and I own that, I practically come with a disclaimer.

That being said writing something down doesn’t come easy to me either, I will over process something in my head until it becomes a huge issue before, I even show any inclination that something is bothering me, then I will let it fester before I even think about writing it down. The writing I find very cathartic, and it helps me process thing before I can freely talk about them.

I think I have explained previously that sometimes I write down feelings, thoughts and ideas into a little blue notebook and that book travels with me to meetings, appointments, and things of the like. Not everything becomes a post, sometimes things from months or years ago become recent posts as it resonates with something going on in our lives current day.

I wrote a post whilst about not being ready to date and how to trust someone around your child when they are non-verbal etc, but I had by the time it was posted already met my partner and was on the verge of introducing to our kids, he didn’t know about my blog back then, but I imagine had he read it, he may have had some questions 😂

I have a friend that called me about one of my posts a few months back (Yes this is about you, this time lol) thinking it had been spurred on by some comments she had made to me and was a little offended that I hadn’t spoken to her about it… Imagine little old me having no idea what comments she was talking about because that post had started out in the blue book months before and then lived in my drafts for weeks. I’m not saying that somethings aren’t based on recent events because they often are but the anatomy of most my posts is a lot more in-depth (sometimes) than hearing, reading, or thinking something and immediately having a rant about it.

Looking in the blue book today, I have about 67 pages of notes, ideas, and doodles. In my notes on my phone, I have about 12 and finally in my drafts about 6. Some of these ideas date back to 2019 and may never make it into a post because what was written isn’t relevant to who I am today, or they were fleeting feelings or repetitive meetings in which can’t be elaborated on so don’t go anywhere.

I read somewhere that in order to run a successful blog you need to have a schedule of posts and stick to that schedule to help build an audience, I’m not sure what is classed as a successful blog, in my eyes his blog is successful… It doesn’t earn me money (if that’s what success means nowadays) but I feel successful because I started this blog with only a small goal in mind, to have just one other parent read it and felt less alone in their journey, if that was just one person reading it and feeling a little more at ease, or one person reaching out for advice ( do try but I am in no means an expert) or just one person realising their feelings are perfectly normal. I feel that based on the people who I have met because of my blog that it is very successful because my goal wasn’t to reach millions of readers or monetise anything. It was to simply help one person in any way shape or form because this journey is a lonely one and I had never felt loneliness like it before. I wanted to educate people or even just one person on what it is like raising a child with special needs and how hard it can be but also how rewarding and I feel I have achieved that and hopefully will continue to do so.

All my love as always 😘 M x

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

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 💕

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

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

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

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?!

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

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

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

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

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

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. 🐻

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

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……

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS

Posted in Events & Holidays

Inclusion pt.2

I wrote a post a few weeks ago about inclusion, today I want to do a little follow up… specifically about pretending to be inclusive.

SEN sessions seem to be available for most places, trampoline parks, splash zones, swimming pools, ice skating etc, it’s a wonderful thing but let’s talk about the ‘inclusivity’ of it, theses are great ways to include our community for certain functions, but they aren’t inclusive at all.

These sessions are usually available at times in which it is not possible for most to attend due to school, unless I am mistaken SEN stands for special educational needs… education been a priority meaning these sessions during term time (in some places they are term time only) in a morning is just not practical, it’s a great promotion I suppose. ‘Look at what we are doing for our SEN kids!’ when not actually making it inclusive at all. When questioned the responses are… ‘well if it proves popular we will look at opening more sessions and time’ it’s a bit backwards isn’t it? A bit of a cop out.

Some places do it a bit better and offer more inclusive times, but most do not. Hull city council, I’m talking to you now specifically. You go from one end of the scale to the other, during school hours or encroaching on bedtime, I know I make it sound like you can’t win but why not open up a peak slot? Take a risk and be inclusive!

SEN swimming at Woodford leisure centre – 6.30pm – 8.30pm

SEN skating at the ice arena – 9.30am – 10.30am

Companies do not have to do anything tailored to SEN or disabled kids and the fact they do is admirable but they fall into thee same traps the HCC do, school times or bedtimes and its not far, I understand you can’t please everyone and at the moment these times suit William with him still been without a school place but what about all the kids fortunate enough to be in school… why should they miss out?

During the summer half term, sessions were opened for SEN swimming, and it proved to be so popular that it sold out completely. Surely this is an indication if not a massive fucking sign that these kinds of events can be profitable for businesses and the council but yet they are so few and far between that’s its insulting.

And don’t even get me started on trying to find an autism friendly showing at the cinema, I have spent ages this morning looking at all 4 (Odeon, Vue, Cineworld & Reel) of my local cinemas and haven’t been able to find a single one and when I say that, I don’t mean that I couldn’t find one suitable for William, I mean that I can’t find one at all! Maybe I’m not looking for the right terms but it shouldn’t be this difficult, should it?

Get new rants delivered directly to your inbox.

Please remember to check us out, and follow us on our social media pages 🙂

Facebook – https://www.facebook.com/ourjourneyontothespectrum
Instagram – https://www.instagram.com/ourjourneyontothespectrum/
Twitter – https://twitter.com/OurJOTS