Posted in Emotions

Friendships

I was thinking today about the things in life we may take for granted and to be honest the list is quite long, but I’ve settled on friends. I don’t mean that we take for granted our friendships but the fact we have them at all.

I for one always thought that I struggled to make friends but then I look around me and back at the past. I may not have a large group of friends, but I have a really good selection. I know if I picked up the phone and called one of them for anything that they would be there and that’s something that some people don’t have. My forever friends aren’t all from the same pats of my life but rather from different times, which shows just how true they are. True friends don’t stay with you because you do the same things or know the same people. They stay because it feels right.

I remember being younger and playing with friends in primary school, partaking in every craze going, Pokémon, yo-yos, crazy bones, and everything else our parents probably hated. We ran around in our summer dresses pretending to be the spice girls whilst obsessively collecting their collectable photos for the album.

Why could I Not do the peace sign?
(Far Left)

I remember growing up down a little cul-de-sac and all the kids were of similar ages, I suppose that’s the advantage of moving into a new build area. Everyone buys their first homes and starts families, I guess. We played out from the moment someone knocked on our door and asked our parents if we were allowed, we didn’t leave the cul-de-sac and came home when the streetlights came on. We spent hours with our dollies pretending we were parents and hours with our craft sets playing at being teachers. Summers spent on the playing field at the top of the street building forts and treehouses, not letting the boys play with our girl gang and Barbies, hundred of Barbies with missing shoes and as we got into our teenage and stopped playing out, we would still come together like friends and neighbours do.

Apparently I was immune to the cold weather.
(Third from the left)

As a teenager, I remember hanging around in my local park or friends back gardens whose parents were more laid back than mine. We would drink awful cheap cider and acted like mini adults. We partied, we drank, we smoked and stayed up late talking about absolute rubbish, thinking we were older than we were and worried about problems that seemed huge at the time but minuscule now.

Obviously there was some very poor quality cameras on the go back then.
(Third from the left)

As an early adult, like most do we drank, we partied and went out three or four nights a week, fuck paying the bills and being on time for work when we can have fun. We were stupid and immature and thought that because we were of adult age we could look after ourselves, but we were wrong. We weren’t ready for the things that life threw at us and we suffered for it.

Macys next to the portland hotel… 2 for 1 drinks to start the night.
(Back right)

We flicked between friend groups and changed our interests to fit in, as someone who doesn’t drive (I am learning… slowly all these years later) would you ever think I belong to a car club? No? well I did. We drove around for hours every night. Parked up in car parks and down quiet streets and probably irritated all the local residents, we camped out in little Ford Kas and Corsa’s and went to rallies and shows. We worked on cars in driveways, kitchens and anywhere you could. I knew what engines were in what cars, despite what insurance certificates said. If we look at youngsters driving now, they’re all driving financed new cars. Where is the pride of building up your own clapped-out banger and adding a spoiler?

Donnington show, free cans of Monster were thrown at us from a monster truck
(Next to the guy in the daft black hat on the left)

As time went on, I grew more responsible and got my own place, focused more at work but still partied on the weekends. Slipping into new friend groups with ease. We spent weekends partying at the beach camping and drinking, listening to live bands, we swam in the dirty ocean without worrying about disease and would stay up hours chatting about life and what we want in the future unaware that we were already living our futures as we partied.

P on the Beach
(Far left)

And then all of a sudden, we are full on adults, proper homes, proper jobs, responsibilities, beautiful children, marriages, divorces, and challenges that we fight and battle every day. We can come together when we all have time but it’s so difficult to schedule anything, but it doesn’t matter. We have different friends with different interest. Some will go to harry potter quiz night, some will come to your house for a cup of tea to sit and put the world to right, some will dye your hair, some you won’t see in months or even years but when you finally do it’s like you have never been apart.

Celebrating my birthday
(Far right)

My point of this is to say that over the years I have had many friend groups and found it relatively easy. Some came from location, some from work, some from circumstance but it was easy but what if it wasn’t? I look at William who is always alone, it doesn’t seem to bother him, but I wonder if he knows he doesn’t have friends, I wonder if it’s something he wants but he doesn’t know how to get it.  Does he see children playing together and want it but it’s too hard for him? Or is it just something I want for him? I think about the children in his class and how they can interact with each other, and I want that for William. I want him to experience friendships, even the ones that crash and burn, the ones that you realise are one sided and the ones you will remember and cherish forever.

For now, William is happy on his own or at least I think he is. He’s so inside his own head and I would give up everything I have just to know what he is thinking. Is his inner voice as cute as the fleeting moments I’ve heard his real voice? Does his inner voice feel trapped within his disabilities? He forms connections with adults easily, I mean let be serious we have all seen him and Big Nan and that’s love and kinship, so he is capable, does he maybe just not like other children? Do they not engage with him in the way he likes or understands? Is that why he ignores them?

Boys best friend?

I look at this picture and he loves his dog, and Rusty loves him but is it enough? I will always be William’s mom; his advocate and I would like to think I will always be his best friend, but I do want more for him. I want what I had? What most people had?
William’s dad and I have booked his first proper birthday party for next year and we will be inviting his whole class which I am very much looking forward to, but I have this feeling that William won’t notice if his classmates are there or not. He will be more focused on Big Nan, his dad and his partner or me and Liam. I guess until we try these things, we just don’t know but I want him to have a friend. I want playdates and sleepovers and I guess in a way I want him to want that too.

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Posted in Events & Holidays

The 1st Family Holiday 2022

I’ve said it a few times but i’m saying it again, I am really trying to be more open to taking William to experience new things so, in for a penny, in for a pound as they say. Instead of another day out. We booked a weekend away! Talk about going from one extreme to another but you know me, I like to jump in with both feet and then act like I’m drowning 🤣

We booked a little cabin near Malton, Coopers Cabin to be precise. If you click the image it should take you to the link.

Coopers Cabin, Malton Grange Lodges

The cabin itself was lovely, although there was a slight hiccup when we got there, it hadn’t been cleaned which meant we couldn’t relax, they sent a lady (Louise) who was brilliant and compensated with a bottle of prosecco but the whole situation put a massive dampener of the start of our holiday especially with the kids already having a super long day and then not being able to settle down straight away. It’s also made me a bit worried about getting our security deposit back, because the cabin wasn’t as thoroughly cleaned as it usually would have been, I am concerned anything the previous occupiers may have done with impact us especially the hot tub as they state that if the filters need changing they will hold back the deposit, I highly doubt that the filters were checked and we notice there was scum around the filter entrance… we shall see what happens with the deposit. They have been asking me review them already but I shall wait until the money is back in my account.

The cabin was spacious and had a master bedroom with ensuite, a second bedroom with 2 single beds which Wilster and I shared and a pull out double (ish) sofa bed in the lounge. As you may be aware from our usual ‘Annual Hobman Family Holidays’ sharing a room with William is not ideal but its also not always horrendous. He woke me up the first morning by prying my eyelids open and trying to shove my glasses on my face whilst laughing like a physcopath, Thats was 3am… 😴 needless to say I mad my way to the spare sofa. The following day he woke me up by doing was I can only describe as physio, he was stretching and bending my legs and then quicky switched to torture by pulling my big toe and other toes in seperate directions but he also climbed onto my back at one point and fell back to sleep so it’s not all bad and I relish in that moment he wants me as comfort to go to sleep as it doesn’t happen very often.

I worried about taking William on a train but I embraced it and we were lucky enough to catch the Pickering steam train up to Goathland (Heartbeat Land) It was the trains first run out in three months due to the track side fires caused by the immense heat this summer. Sadly it was pulled off after our trip due to an issue with the coal so we were doubly lucky. The noise, smells, movements and people were all things I had thought about before taking the leap, not to mention Williams chair. I would like to give a big shout out to the staff at NYMR especially Adrian Sartain (not sure if I have spelt that right) but he was amazing and really looked after us and put me at ease on what was an anxiety inducing journey for me. I tweeted NYMR so that they would pass my thanks on to him.

I’m not sure why I was so worried because William often surprises me, I have an amazing video of William laughing and giggling whilst I will post to our facebook page. He thoroughly love the journey and proved once again that new experiences aren’t always a bad thing and don’t require my overthinking and stressing (not that I will ever stop) He is constantly surprising me, keeping me on my toes and not always in a bad way haha 🤣

Have you ever felt like an outsider? like you don’t really belong somewhere, having to try hard to fit in but never really doing so… I guess it’s the true sign of an introvert. Believe it or not this statement isn’t about William, it’s about me. I can honestly say that this weekend I truly felt a part of something. I felt so at peace just sat with my new extended family and talking about rubbish, being honest about parenthood, my relationship and not feeling judged in the slightest. I felt accepted without the pressures I have faced in the past to behave as those around me do. Not only did I feel accepted and welcomed but I know that William felt it too, Just look at these pictures and see how comfortable he was.

Our next excursion was Flamingo land, again I was worried. He likes the fair that comes to Hull but its not as expensive and easier to get home and back to his comfort zone.
The first thing I will say, is that it’s soo fucking expensive! We should have pre-booked but because the weather was due to be torrential, we chose not to and boy was that a mistake. £50 per person is daylight robbery especially for a 5 year old!

Flamingo Land has changed alot since I last went (about 18 years ago😱) but fundamentally it’s the same.
Little Miss absolutely loved it, she wanted to go on every single ride but sadly she isn’t called Little Miss for no reason and she was too small to go on the majority of the ones that took her fancy. The log flume was the one she was most looking forward to and she was too dinky, her dad did sneakily stand her in the splash zone at the side of the ride so that they got sprayed as the ride hit the water. I think she took it as a good consolation but we have vowed to take her back next year but measure her before as she needs to 3.6ft tall.
There were plenty of rides aimed at her age height group but they weren’t as daredevilish as she likes.

That being said, she did have an amazing time and thoroughly enjoyed the experience, including going round the zoo section.
Williams experience is a little more difficult to explain, he coped really well being inside the park but I don’t believe he got a great deal of enjoyment from it, at one point he even had a nap but then again I’m not surprised since he had woken me at 3am 🙄 He’s really hard to read during these situations so he could have really enjoyed, could have just tolerated it but I know he didn’t hate it as he always makes that clearly known 🤣

We ate out on both nights at The Smithy Arms, clicking their name will take you to their facebook page, I highly recommend them as their menu was varied, portion sizes plentiful (although if you order fish & chips, don’t be alarmed if half a battered whale turns up🐋) and their food was very tasty without charging the earth. The kids menu was brilliant (every kids meal included dessert) and they were very accomodating for William in his chair. If we book again for next year we will most definitely go back.

Our first holiday in my eyes was a huge success, don’t get me wrong, it was really nice to get home and relax but I would go back in a heartbeat and do it all again… And now starts the countdown to our next adventure 🥰

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Posted in Events & Holidays, Reviews

Paw Patrol Live – 07/08/2022

After the success of Peppa Pig, we were super excited to see Paw Patrol Live… Expanding Williams experiences and opening him up to new things can be so exciting but nerve wracking too. I made myself a promise that I wouldn’t let my worry or anxiety stop me from taking William to new places or events and I am trying my best to stick to it.

Obviously Little Miss came with us too, It’s great to be able to do these things as a family and brings us all so much joy to continue to blend our family into one. 👨‍👨‍👧‍👦

Paw Patrol ready x

So this photo is a bit misleading, let me explain from the beginning…
Trying to obtain access for Williams chair was a bit of a nightmare, I was diverted to ticketmaster who told me they could only deal with sales, despite their email being the one to contact in relation to accessibility. Then I was sent to the ticket provider which was Sky who said they couldn’t help me and I would need to contact the venue direct which I would have done had I not been told to go to all these other places… Sky gave me a contact email for Bonus and no one replied for over a week until I chased them and forwarded my original email. They were apologetic and swiftly organised the access for us but it should be much clearer on how to do this when obtaining tickets from a third party. I want to also add that there was an out of order sign on the lift meaning if access was required to the higher levels, it would not have been possible.

Disabled parking was brilliant, there are multiple free spaces on the road around the arena and we easily found an open spot despite the show being quite full. There are pay and display car parks very close by too however I can’t comment on the disabled spaces as we didn’t need to use these but parking in general seemed plentiful so if you are planning on going to the Bonus Arena, you don’t need to worry about that aspect.

The lobby was busy and loud, once again merchandise is shoved in your face, just like it was at Peppa Pig, we had already agreed that the kids wouldn’t be getting anything this time as they can’t expect a toy on top of a day out every time. I am glad we had made this decision in advance because they were selling holographic photo cards in which one of the Paw Patrol pups changes into your kids face… for £25!!! £25 whole pounds for a piece of card! Merchandise stands were place in the center of the lobby meaning you had to walk past it to enter the arena, because we had access tickets we entered via a different door but still had to pass this area should we need the bathroom. I don’t agree with this, I have said it before but it puts parents who can’t afford merchandise in awkward positions when their children want these items, we are in the middle of a cost of living crisis after all.

I can not comment on the disabled toilets as William didn’t need changing and when I needed to go, I used the women’s… I had a little look at the door when I went passed and from what I could see, you didn’t need a radar key but I wouldn’t quote me on this as I was desperate for a wee.

Back to the performance… William became upset as we entered the arena. You have to remember that its a large room with high ceilings so noise does carry. Our seats were in a good location but not as good as the chair spaces are Bridlington Spa, we were next to the entrance on the right hand side when looking at the stage meaning a lot of footfall passed us and a side view of the stage. Whereas at the Spa we had an elevated view of the stage which had a better view and no footfall. Both sets of seats were really good but when comparing them, Brid Spa wins hands down. The seats at The Bonus Arena are removable so I think there is maybe a better location for them to seat wheelchair users, even if its just to be away from the footfall as a few kids nearly walked into Williams front wheels.

Comparisons for disabled seating.

William continued to cry and be distressed up until about 20 minutes into the performance. The lights were super bright, the noise very loud and I was about to leave with him when he suddenly started laughing and clapping, I literally felt this wave of relief and laughed with him. I’m so glad I persevered and let him adjust to the noise, lights and surroundings but I did feel like the worst mom in the world for a while. That much so that I bought £15 worth of guilt popcorn, It’s like normal popcorn but at cinema prices 🙄

The popcorn was a huge hit as you can see, with Willster eating both buckets 🤣 but £15 is a bit steep and it wasn’t even at butterkist standards. More like a cheap packet from home bargains which goes to show what the profit margins are for these vendors at shows like this.

He enjoyed the show whilst he was scoffing his popcorn, we left just as the show was ending which was lucky because as we entered the lobby we heard what I thought was a confetti cannon or a minor explosion, unsure which 🤷‍♀️

I don’t think we would go to a show at the Bonus arena again due to how loud it is but it hasn’t put us off as we will definitely be going to more shows but at different locations. I’m grateful we had been to Bridlington Spa first otherwise my opinion may be different, We won’t be paying pantomime prices so if anyone has anyone has any recommendations on shows in which we won’t need to sell a kidney to pay for, please let me know 🙂

Much love 😘, M.x

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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

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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 Brief updates

Hit the Deck

This post is a little out of character for me but it’s about my relationship, have you ever just had a moment in which you realise that your feelings are right. I’ve known for quite some time that I love L and Little Miss and I’ve not kept that a secret from anyone but today something happened which solidified that and made me think that maybe my choice in men isn’t as terrible as my decree absolute would suggest 🤣

Although Thursdays are traditionally days L & I bring our families together for a playdate, we have had one today which is a Friday and since both kids have previously been under the weather, we opted to stay inside but go out at the same time. We went to The Deep. If you haven’t been then you need to, especially if you are in Hull or the surrounding areas as 1 admission price gets you in for the full year. This will definitely give us something to do on rainy Thursdays going forward.

I like The Deep in general, I think the year long ticket is incredible value if you go more than once. Under 3’s go for free which saved us money in regard to Little Miss but for 2 adults and one child, there wasn’t much change from £50. So I will say it again (for the cheap seats in the back) go more than once!

The last time that I took William to the deep, he was about a year old and in a pram. Today I opted not to take the Maclaren, it’s a risk as it means if he refused to walk, I would have to carry him all the way around but I wanted him to be able to get up close with the exhibits and engage with them and he did so I am so pleased that I took that risk. Ooh another big bonus for The Deep is that blue badge holders park for free!

The kids pretty much did their own thing, leading L and I in different directions and enjoying the fish, the colours and the bright lights but they came together and sat nicely watching some fish and I had this little flash of them growing up together and remembering these random days out.

There was a medical incident in which the exit was blocked off, if you’ve been before, it was the tunnel you walk through on the way to the stairs and lift. This mean that the final area (where the soft play used to be) turned into a bottle neck. Lots of people, means lots of noise. It was warm and there was little communication from staff meaning no one really knew what was going on. As a natural worrier, I was a little freaked out about the many more people making their way through to that area but my feelings were not as bad as Williams. I could articulate mine and make myself feel better but William couldn’t and he became quite distressed. Once we made it out and near the main elevators, William had become so overwhelmed that he laid on the floor in a meltdown. As Williams Mom, I think nothing of dropping to the floor with him, stroking his head and telling him that he’s ok and i’m here. I’ve even sang to him in front of people and believe me, I am tone deaf… but we do what is right for our kids.
Without a second hesitation L & little miss got on the floor next to us and comfort William until he is ready to get up. People stared and probably passed judgement without understanding but in that moment, we all sat on the dirty floor and let people walk around us. I would have always been there but L & little miss chose to be there… Now that’s a whole new level of love 💕

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