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 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.

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 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. 🤞

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, 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!

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 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 🤣

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

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.

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

Its our birthday! 🎈

And just like that, we turn 2 (well yesterday to be precise) 😊

It’s been a crazy 2 years, we’ve been read in 59 countries, we have 3 social media pages (links below), our story has been featured in online magazines, newspapers and other peoples blogs, 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.

WORLD DOMINATION MAP

Here are the top 10 countries in which we are read in

  • United Kingdom 🇬🇧
  • USA 🇺🇸
  • Australia 🇦🇺
  • China 🇨🇳
  • Malta 🇲🇹
  • Ireland 🇮🇪
  • Spain 🇪🇸
  • Germany 🇩🇪
  • Canada 🇨🇦
  • Cambodia 🇰🇭

I think the best way to end our little celebratory post is to share our most popular posts in the last 2 years.

all our 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

My own journey

8th January 2018

Look at this girl and analyse what you are seeing. A happy young mom holding her sleeping baby posing for her husband to take a photo… but that’s not whats really happening here.

It was my first day back at work after almost a year off. I woke up early, did my hair and make up to plaster over the cracks of how I was truly feeling.

I remember feeling relief as I left the house; like a huge weight was lifted off my shoulders. I could finally be away from William. My job has always been a constant in my life, since I was 17 so I felt like I was going back to do something I was really good at and since that wasn’t how I felt about being a mom, it made me really happy.

Only it wasn’t a relief, things had changed and people had left and I couldn’t focus on any one task. I was now part time and there weren’t enough hours in a day. I was constantly chasing my own tail. I remember coming home and faking excited to see William… I should have missed him. I held him close whilst he nodded off and had a little cry because ‘I missed him’ only I cried because I didnt. I cried for me. Not for him.

‘Take a picture Dave’ I don’t have many pictures of William and I over his first 2 years purely because I was alway the one behind the camera (This made post separation purging a nightmare🤣) I felt it was important to take a picture and prove that I was OK. That I was happy. Its silly isn’t it, that’s what this social media age has done to us. I think that’s why on here I try to be as honest and open as possible.

I’m not ashamed to say I was I was spiralling down a very dark hole and ended up at a stage I couldn’t see the light. I worried about my family dying when there was nothing wrong with them but the thought consumed me and kept me awake at night, I couldn’t cope with the changes is my career and found myself struggling to do the most simple of tasks but faking it with a smile and a cheery attitude. William was missing his milestones and I thought it was my fault, did I do something wrong during pregnancy? Was it because I didn’t love him enough? I began focusing on the fact that he might be taken away from me, social services would somehow get involved and take one look at me and know that it was my fault.

William was 18 months old and I had reached a point in which I felt like things would be better if I wasn’t around anymore by the time I sought help. I spoke to the doctor and just sobbed, I don’t know how he could possibly understand what I was saying but he listened and offered me help and I personally chose to be medicated, Sertraline to help with my depression and Propranolol for anxiety. It was hard, really hard and I came off them early and I wasn’t ready and soon spiraled back down that hole but I knew… I knew I wasn’t ready and went straight back to the doctor and this time when I thought I was ready, we slowly weaned off them and it worked.

For two years I have been off all medication and coping well. I have embraced that darkness I felt and can happily share my story. William is my word and the love I have for him was always there but was hidden by the storm clouds in my head. It didn’t flood in immediately but bit by bit as the clouds cleared, just like the sun does… it creeped through.

I know that Williams delays and medical issues are not my fault, that I did everything right when pregnant and that I loved him unconditionally from the moment I saw him on my scan and that even though I didn’t feel it, he did. He knew I loved him and still knows now.

There are days, even now in which I feel a darkness but speaking to people and being open about it really helps. This blog saved me as did all of you who read it, whether its ever post or just one. Each of you help me overcome every hurdle, every obstacle just by allowing me a platform to rant and cry about how I feel. Sometimes about myself or sometimes about the system that fails us.

Thank you and if anyone needs to talk please get in touch, with me, with a friend, a doctor. Don’t keep it to yourself. Darkness isn’t as lonely if you have someone by your side.🥰

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

The Hobman Holiday

It was that time of year again, the annual family holiday. The stress, the anxiety, the tears and that’s just me whilst trying to pack our bags 🤣

It was a new beginning this year as it was a pureblood adventure, cheeky Harry potter reference there 😜 Mom and Dad, with their two kids Me and H and our two kids Kaylee and William.
each year our numbers have dwindled, my dad jokes that the holiday metaphorically kills people off… he was fearful for his life, if mom hasn’t got rid of him in over 40 years, i think he may be safe 😂 It sounds crazy but this was my favourite trip yet and we have being doing it since 2017. I climbed the ingleton waterfall walk whilst pregnant with William. If you haven’t done it, please check it out by clicking here as it is beautiful.

Just like last year William loved stream walking, last year we went slightly later in the year and he had to be fully clothed, warm and in wellies but this year I got him some aqua shoes from amazon which were amazing as it meant he could scramble over rocks in the water. Kaylee was brave and they both went in, in bare feet 😮 Nanna planned on keeping her feet dry but William had other ideas and dragged her in with him but me on the other hand was all in, as you can see my feet are full submerged… I was not wearing aqua shoes; my sketchers will never be the same!

Swimming in Ingletons outdoor pool is always a highlight for me and sadly last year it wasn’t open due to Covid but this year it had undergone a refurbishment and was open, we took full advantage and booked it privately. If you are in the area (maybe after the waterfall walk 😉) check it out, here’s the info. The pool is kept amazingly clean and has disabled changing facilities which made getting William ready and changed afterwards a dream. The staff as always were super friendly and helpful.
I worried about Williams bowel problems meaning we couldn’t swim as irs super difficult to find swim nappies in his size, I mean look at the issues we had with standard nappies 🙄 however there is website called splash about which sell specialised wetsuits without the specialised price. check it out here. William is modelling the ‘Jammer wetsuit in cobalt blue’ the website claims that this is the first and only wetsuit to provide faecal leak protection 💩 well I am not sure if that statement is true but it does work and for less than £30 you can’t go wrong! I will definitely be buying the next size up when it’s needed.
The blow up life vest was an absolute waste of £13, not including the link as I wouldn’t want anyone else to waste their money. It claims to be designed for children ages 3-6 years but was huge on William who is 4 and a half despite tightening the straps as far as they would go. I also deemed it unsafe as it kept tipping him upside down which meant he could have no independence in the water. To add insult to injury, the material was so thin that William bit through it within 15 minutes so it got abandoned in the pool bin.

I want to talk about something that happened after swimming when we went for a cream tea to celebrate H’s birthday, something that happens a lot… I would like to throw out that I do not currently have a blue parking badge for William but I have applied for one and until I receive it we are not eligible to park in disabled spaces so we don’t however it does make parking in standard size spaces a nightmare, we try to get into a mother and child space but these aren’t always available. The place we chose for our cream tea is divine but doesn’t have mother and child spaces  so we pulled into 2 spaces whilst we unloaded william, his pram and the essentials (there were numerous other spaces available) the reason we did this was to protect the cars on either side whilst we remove Wiliam from the car as it can be difficult and he often kicks the car door which can cause damage to our car and those around us. I will reiterate her that there were numerous other spaces available. A “gentleman” and I use that word ironically decided to pull up behind us and comment on our parking, baring in mind it was easy to see we were trying to remove William from the car. There was only myself, William and my Mom there at that point. Firstly the “gent” had no reason to comment as there were multiple spaces and I personally think we were doing the right thing. He also commented when he thought it was two women on their own but shit himself when my dad stepped in who was in a car travelling behind us. Comments like this are the reason I suffer with anxiety when taking William out in the car (Baring in mind that I don’t drive so rely on other people) making comments to women on their own can be intimidating and this guy blatantly wasn’t aware my dad was with us and I genuinely believe that had my dad been visible at the time of his comment that he wouldn’t have made it.
There are too many people in this world that think its ok to make judgemental comments about others without knowing the full facts, you read about it all the time in the papers. people leaving notes on cars in disabled bays because they don’t look disabled or people commenting as people with hidden disabilities use disabled toilets. Its crazy that people think this is acceptable!

William did so well with his walking whilst we were away and because the cottage was at the end of a lane in the middle of nowhere, he had the freedom to walk at his own pace and explore his surroundings, he struggles walking when he has to be controlled because of traffic or needing to be somewhere at a certain time which is why we have asked for a referral to wheelchair services to try and get funding towards his own adapted stroller, however this was sent in september last year and we are still chasing it now 🙄 Just like everything else he needs.
Picture one is so special, I know it may not look it but it genuinely brought tears to my eyes. During our walk I was tickling his neck with a piece of wheat and when I threw it away he picked another one and passed me it so I would tickle him more… he is doing so well with his object exchange.

Sleepwise wasn’t ideal whilst away, I was sharing a room with William which meant I couldn’t go to sleep until he was asleep and I have to wake up when he woke. Unfortunately on the Wednesday he didn’t go to sleep until the 3am and then on the Friday woke up at 3am so needless to say, I need a holiday to recover from my holiday haha. He found great comfort in his tablet whilst away which he sadly broke however thanks to Amazon’s no worry warranty, he has a free of charge replacement due any day now.

The holiday as a whole was hugely successful and William did so well with the changes to his routine, he loved being with all his family and as always took a huge shine to his grandad. We got a little wet going out for our evening meal which threw William a little out of sorts (third pic) however he soon came round and enjoyed his dinner.

I won a bad parent award as I had accidentally packed a small pack of nappies by mistake, thankfully I have Amazon prime and was able to get some to us, not next day as we were the middle of nowhere but within 2 days which is pretty bloody brilliant. I felt like I had gone back in time having to pay for them again… honestly I was so angry with myself and don’t know what I would have done had I not been able to get any 😥

It was really nice to have some much needed family time after a year and a half of lockdowns, isolation, shielding etc and I look forward to doing it so much more often 🥰

I have a little confession to make, I started dating… I’ve spoken on here about how I don’t know if I would ever be ready or how to introduce someone to William but it just sort of happened in the most natural way. He’s an amazing person and William immediately took to him and his daughter which is more than I could have ever asked for.

I share a lot on here about Williams journey and how I handle things (or sometimes dont), but this is private for now. It’s happening, I’m very happy, as is William and that is all that matters.

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