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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