Posted in Events & Holidays

Its our birthday!… Pt.3🎈

And just like that, we turn 3… It feels like yesterday in which I was awake all night writing multiple posts that I had been originally sharing as singular facebook statuses to update friends and family. It was a long night and I cried alot, angrily typing on my old laptop that believe me had seen better days. I was nervous and excited but once I published the blog, I felt this wave of relief.

It’s been a busy and emotional 3 years, we’ve written 131 posts, been read in 64 countries, we have 3 social media pages (links below), our blog has been featured in online magazines & papers, physical magazines & newspapers, other people’s blogs and on social media. We’ve been approached by journalists for story pieces and most importantly we’ve been approached by other parents who just wanted advice and if you can remember that far back my main goal when I started this was “If one other parent who is worried about their child missing milestones, one relative worried about how their family will cope or one person who just doesn’t quite understand reads this and either feels less alone or more educated then I know I have done a wonderful thing” and I feel like we have more than achieved that goal but that doesn’t mean we will stop because everyday, a child misses a milestone, everyday a parent frantically googles why their child doesn’t make eye contact and I want to continue to help even if it is just to smile and say ‘you’re not alone’ or ‘it’s perfectly normal to feel that way’

There have been many ups and downs but sharing it with you all has made things so much easier and I am grateful to each and every one of our readers. You guys helped support me through depression, a pandemic, separation, divorce, financial worries, educational failures and so many more momentous events over the last 3 years and I am so very grateful.

WORLD DOM MAP

Here are the top 10 countries compared to those of 2021, it’s crazy to see countries that I have never visited, have no connection to and can only dream of going are tuning in to our posts despite me being in the UK and even then outside of Yorkshire I think people may struggle to understand me 🤣

20212022
United KingdomUnited Kingdom
USAUSA
Australia Ireland
ChinaMalta
MaltaAustralia
IrelandChina
SpainCanada
GermanyIsreal
CanadaPhilippines
CambodiaGermany
Changes over the year

I think the best way to end our little celebratory post is to share our most popular posts in the last 3 years. It’s the first time that our first ever post Friends in low places has been knocked out of the top five

20212022
Non-StarterNon-Starter
Two Faced26/04/22
Back to the pound part one & twoMothers Vs Fathers
Friends in low placesBack to the pound part one & two
Fathers and SonsA letter to my son
Highest views of all time

and finally here is my favourite social media post of the year, it was hard to choose just one as our social pages often contain just small snippets of our lives, rants around social events, memes and reflections on the news. This was the first time I officially included Liam in a post but what an amazing reason to do so.

If you don’t already, please subscribe or follow our social media pages. The more people our blog reaches the better. All our love 😘 M.x

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Posted in Emotions

Fog

I’m not really sure about where to start with this post… I’ve had a bit of a block recently. I’ve been updating our Facebook page but not much else. I guess I’m a little blocked.

It’s not that I have nothing to write about but more than I can’t put things into focus. The best way I can describe it, is that my head is fuzzy.

I’m finding it difficult to understand how I am feeling, why I am feeling certain ways and I’m not really thinking rationally about day to day things. I’ve not hidden it, I’ve been honest about how I’m feeling and some days I can feel the fog lifting.

I didn’t want any of my fuzziness to infect my posts which is why I have been a little M.I.A recently. Writing things down is my way of processing things, I don’t share everything I write as some of it is just to vent but recently my writing hasn’t been consistent, it hasn’t been cathartic when I jot things down, uts been irratic and angry and I don’t know why.

I guess what I’m trying to say is that we are ok, William is thriving at school, Liam and I are doing great and we are now living together. Little Miss is still as sassy as ever, Sundays are still days for Big Nanna and the world is still turning.

Hopefully the fog lifts soon and I can get back to some more consistent and therapeutic writing but until then look out for sparodic posts that may not be on track with my usual style of writing.

Much love, M xx

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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

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Posted in school

Self doubt

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

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

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

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

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

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

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

Uniform all ready 🥰

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

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Posted in 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 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 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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