Posted in Events & Holidays

Overcautious

I don’t think I have taken William to the beach in at least 3 years, when we think about covid, it must have been summer 2019, that means William was only 2 when we first went to the beach which sadly was the last time until recently.
Back in 2019 he loved it, we struggled to keep him out of the water even as it got colder. For a child that at the time hated having a bath, he loved the sea.

Riding the waves with Auntie Nelen & Kaylee 2019 x

So much has changed since that photo. I was worried it would be a huge sensory overload for him and it made me anxious about it, but it was one of those situations in which I wasn’t just worried about how William would handle it but how I would handle William and I’m not sure which I was more fearful about, and I think that makes me a bit selfish and sometimes it takes a while for me to put that aside. I am only human after all. 🤷‍♀️ I do wonder how many other things that I have been so worried about, that its stopped me from actually experiencing them or letting William experience them. As a natural worrier, I don’t think this will ever stop but as long as I take a breath, things will eventually become clearer in my mind and I will suck it up and leap into new experiences.

Well we took that leap, We had taken Little Miss on an impromptu beach visit and felt we should do the same for William. The thought of it gave me that feeling you get in your stomach, the one in which you aren’t sure if your scared, nervous, excited or about to shit yourself. 💩

We took Williams blue badge so we could secure a parking spot with enough space to safely put him in his wheelchair which was also close to places of interest for him. First stop was obviously fish and chips, because are you even at the beach if you don’t get some and since we visited Hornsea, it had to be Sullivans 🤤 William was a little picky but demolished his chips and battered sausage (Insert comment here from my dad🤣) after a bit of coercion and alot of my curry sauce.

We then walked along the front burning off our food and desperately trying to avoid the little black beetles that seem to be out in force this year 🙄 Getting his chair on to the sand was a bit of a nightmare as we had to find a sloped entrance, pushing it across the sand took strength I didn’t know I had 💪 As soon as he was out of his chair, he was straight in the water. If I hadn’t have stopped him, it would have been a lot more than just a paddle but he absolutely loved it. I worried that the smell, sound and textures would be too overwhelming for him but he took it all in his stride and absolutely surprised astounded me. I think sometimes I am guilty of underestimating him, in fact I know I am guilty of it as this isn’t the first time I have been proven to be overcautious.

We ended our day with a cheeky trip to Mr Moos ice cream place, I had never been before but Williams uncle Jim had told us a few times about how good it was. Liam and I had what I would class as ‘Fat Bastard’ desserts, they were huge but got eaten 🤣 and since William doesn’t really like ice cream, he had a huge piece of cake and seemed to thoroughly enjoy trying to feed himself with a spoon, there wasn’t a crumb left on his plate.

As you can see he was truly exhausted after our little adventure and we are very much looking forward to our next one… Peppa Pig Live! Something I never thought I would do, Mainly because I hate that little bratty talking piece of bacon but also because I wasn’t sure how William would take to it but if we don’t try it we will never know!
I will keep you posted on how it goes as it’s a big thing for our little blended family but I’m sure it won’t be our last adventure.

Much love, M 😘x

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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 Emotions

It doesn’t grow on trees

Kids are expensive!!! End of post.

Joking aside, I know all kids are expensive, but William sometimes takes the mick… He recently started eating the carpet in his bedroom 😭 Its was semi avoidable as I could rearrange his furniture to make the areas he had pulled, less accessible but he would just find more places. Fast forward a week and I now have laminate. Honestly, I question sometime if the universe thinks I’m made of money 🤷‍♀️ I work part time and run a house by myself, there is food in the cupboards, the heating is on and there is an abundance of love and cuddles when needed but that doesn’t cover some of the things I have needed to buy in a hurry, like laminate and fitting etc.

I want to talk about DLA, we all know that when I signed up for this, that I was very pessimistic about it. We didn’t need it. I could provide for William on my own. He isn’t disabled. Etc etc etc.

Below is a list of things off the top of my head in which DLA has helped us buy

  • A carpet cleaner (on to the second one)
  • Specialised bed protectors (multiple attempts and varieties)
  • Nappies (before nappy service)
  • Drinks bottles (multiple and in bulk)
  • Vitamins
  • Strollers and accessories (new, adaptive & second hand)
  • New or adaptive clothing to prevent Pica or SPD overload (multiple and in bulk)
  • Duplicating favourite toys (in case it breaks and need to swap it out asap)
  • Weighted blankets
  • Sensory lighting
  • Black out blinds
  • 6149072 chicken nuggets and counting
  • Taxis to appointments
  • Laminate flooring

Disability living allowance had made our lives so much easier financially over the last 2 years, as you can see from the above list, it has bought some random but much needed items. William, when he has access to it will smear and eat the contents of his nappy (this was before the nappy itself became his new snack) the carpet cleaner used to be out every other day… now it’s rare but still a necessity. Its difficult to know exactly what will work for William (or any child really) I found a juice bottle that William couldn’t spill but could easily drink from… it was amazing, so I bought a few. Fast forward to maybe the third or fourth batch that I bought, and they leaked all the time! Something had changed in the manufacturing process, and they were now useless to us. We then must try different bottles and try to find one that suits our needs and hope we can find more of it. We currently have 2 from ALDI that were quite expensive but holding up well 🤞
The same applies to sensory items, lets face it… anyone who has had to buy something with the words ‘sensory’, ‘adaptive’, ‘special needs’, ‘disabled’ or any thing of the like will know they tend to double the prices if not triple. There are actually companies out there that try to scam parents of special needs children by advertising such items… but that is a story for a later date.

Strollers?! Let’s not even go there about wheelchair services and how useless they are. No update since 17th November 2021, multiple emails, and calls. NO CONTACT! Whilst waiting for my referral to go through (the first time, the time it got lost in the ether) I bought a second-hand adaptive stroller which has been a godsend. It was expensive and is slowly falling apart now but it is honestly a lifeline, I had tried multiple reasonably priced strollers made for bigger children but they didn’t last 5 minuets 🙄 I have since had what I believe to my third referral to wheelchair services and now have a wheelchair sat in my office that is unsuitable for William to use… as you can tell from the lack of contact, they are in no rush to rectify it either. I think we are at a stage now where I will probably have to buy a brand new one instead. 💸

It’s a complete guessing game and changes all the time. William could wear fluffy coats which was great as I buy his clothes a year in advance (I spend a year buying the next size up so it isn’t such a hit for me when he has a growth spurt) suddenly he starts eating the coats and new ones are required that will keep him warm but that he can not eat. He was always able to wear Pj’s but now he can’t, now he takes off the pants and eats his nappy or smears its contents. I guess what will work and I’m not always right.

Last night his room was finished, flooring has been laid, walls are painted, decals are firmly stuck around the top, new bedding, lighting etc and I’m excited to see his little face when he sees it tonight. When the walls were painted, he was over the moon and his face was beautiful. His bedroom is devoid of most soft toys as he cannot have them due to fluff and been able to pull it out with his teeth, even the ones that were mine and his dads when we were younger 😢 the one thing I have found that he can have and enjoys are squishmallows, but their so bloody expensive. I managed to get a dinosaur one from ALDI which was a bargain (actually, I think it was from big nan) and he loves it. Little miss has her own for when she is here but its smaller, William has claimed this for himself when she isn’t around. I think I may have to add to his collection when I can and hopefully, they don’t become a problem too.

He does have a bed, I promise 🤣

Don’t be ashamed of claiming for DLA if you are entitled, they’re not easy forms to fill in and my first one nearly gave me a breakdown but my second was much easier and Williams renewal is in place ready for March, and it will undoubtedly be used well and on more random things that wouldn’t make sense to anyone else but make Williams life easier and safer.

All our love as always 😘, M.x

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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

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