Posted in Brief updates

Let’s have a catch up

I have a little notebook that comes with me to all of williams meetings, I use this same notebook to jot down ideas of posts if something has happened or if I am feeling in a sharing mood. Quite often these ideas and thoughts don’t come into fruition so I thought I would put together a little catch up post of all the things I have yet to fill you in on.

So here is a little summary of what is to be included in this piece.
* William’s birthday
* School allocations
* Nappy service
* Impaction
* Big Nan

Williams 4th Birthday!

How is my little 8.8lbs baby now a four year old?! I swear to god I have just blinked and missed a few years. I’m sure I am not the only parent who feels this way but it seems like time has flown by. I can’t be really surprised as we are dealing with school allocations and that doesn’t happen until they reach this age but holy shit he is now 4!!!

I got some funny looks and questions when people asked me how we would be celebrating his birthday. As many people know William struggles should his routine change drastically so my plan for his birthday was to ignore it… not completely but to protect the main structure of his routine. He woke up the morning of his birthday like any other Monday. His dad came to do the nursery run and the house remained as normal. No sign of birthday regalia at all.
He ate his breakfast and went to nursery in his amazing birthday T Shirt (one of many 🥰) made by his Auntie Debs.
We sent a Curly Caterpillar cake from Tesco for him and his friends to share in the sunshine room. No one tell M&S! #FREECUTHBERT 🐛
Whilst he was at nursery his dad (yes we are still coparenting) and I set up the living room with his gifts, card and balloons for him to come home to. I even cooked him his favorite tea which was a full roast dinner with all the trimmings! We had decided to celebrate after nursery so the change to his routine wouldn’t throw out his full day and cause his potential upset at nursery and although people thought it was mean, we found it actually worked really well for William and is something we will look at doing going forward. He came home, explored the living room, picked his favourite new toys and then ate his dinner. It was lovely to see him so calm.

Presents this year were amazing as our friends and family understand suitability and what William classes as high interest. I think the most amazing surprise was a handmade busy board from his uncle Jim. William immediate fell in love with all the fiddly bits and it has sat in the living room ever since for him to play with.
Every year I usually make William a cake but this year I purchased a premade ‘Hey Duggee’ cake and as you can see he was quite happy with it and ate too many pieces to count 🍰🍰🍰🍰 although I made sure his dad and I got at least one piece each.
We had a few nice doorstep visits from friends and family which really made the day special as we hadn’t seen them in such a long time. #covidsucks

School Allocations

I have written a lot about allocations in other posts and on our social media pages but I just wanted to include a little summary of what has happened so far…

  • February 15th – William was not considered for a special school place but may be considered during the moderation for his EHCP (highly unlikely)
  • March 2nd – Moderating should have taken place but didn’t 🙄
  • March 15th – Moderation went a head and no special school place given.
  • April 16th – Mainstream allocations released.

William did not get into his first choice of mainstream school… because why would he. They like to make things as hard as possible after all!

I now have to follow the appeal process which is due in on 21st May. This shouldn’t matter as I should be able to name our chosen school on his EHCP but the SENCO advised we should go ahead with appeal to cover all our bases. This doesn’t fill me with confidence when the system has let us down so many times already 😥

The Nappy Service

As I have mentioned previously the nappy service is available for children who have reached the age of four which meant that when William needed them they were unavailable to him until he turned 4. We were incredibly lucky because the amazing Essity stepped in and provided us with nappies until the service could be applied for. This saved us hundreds of pounds and lot of stress and we are so grateful for their help in what felt like a time we were forgotten about and fell into one of the many gaps in the system.

On Williams birthday his health visitor put the referral across and we now have the service in place, first delivery pending. The only issue I encountered once we were referred to this service was that we had been sent a certain nappy which was a type the service also use, ideally i wanted to remain on these as I knew the sizing and the fact they could hold up to Williams movements etc but apparently its a bit of a postcode lottery and because we are not in the East Riding we are not eligible for that brand 🙄 I’m not even sure why that matters but aparently it does.

The lady that called me was brilliant, she understood I was working and may have to dip in and out of the call. She went through many questions with me and it was actually a pleasure to speak to her but what really made things better for me about how I was feeling as a parent was this message…

I needed this and it made me cry 😭

Impaction

Warning this is about poo! 💩

One thing that came to light recently as a follow on from the nappy service call was that William may have an impaction in his bowels, we are unsure if this is just nature or if it is due to the many things he eats which are not food. I mean it was only the other day his dad had to pull carpet fibres out of his bum 🤢 I’m so glad that was on one of his dads days 🤣

They believe his problems going to toilet are not just because of a lazy bowel but because there is an impaction which hasn’t cleared and everything else is adding to it or coming around it.

We have been given additional Movicol and Laxido to try and help it clear but, if it doesn’t i’m not sure what will happen next other than the fact we have to go back to the doctors to check what our options are.

I am trying not to google or freak out but this is me after all so check back in shortly and I may be weeping at my desk!

Return of The Big Nanna

184 days… 184 long days!
297 days in total… almost a quarter of Williams life without his Big Nanna.

I don’t know how soulmates work, I thought I did but their bond proves me wrong completely; she is 91 and he is 4 and they just light each other up. Big nan is suddenly young again and William is suddenly capable of interacting on a much higher level, he sees her and I mean really sees her. He finds comfort in his Big nanna just like I did in her when I was a child. To him, she is home, safety, love and lots of snacks.

Family 🥰

She has had her vaccines and as lockdown is lifting, things can slowly get back to normal and our normal is seeing Big nanna every Sunday for snacks and snuggles.

I should be back on top of posting now so I will hopefully be back to post more regularly going forward.
As always please remember to subscribe down below.
Much Love M. x

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Posted in Thank You

In a Gap… Pt2, The Ladder

Today I want to talk about help and the places in which you expect it to come from but more importantly the places you would never expect. Today I want to talk about Essity and the amazing and generous help they have offered us but first I was to give you all a little background on what has led to today. This is by no means a sponsored post as Essity has kept all communication private but I feel they need to be mentioned as people find it so easy to brand big companies as heartless and greedy but today Essity has really helped put us out of the gap we found ourselves in in regards to the nappy service.

We have spoken previously about when it comes to help from the NHS, the council and other sources we often find ourselves in a gap; a void that you fall into when you miss the criteria that warrants help. It can be so frustrating that in our case Williams age prevents him from getting the help he needs or the help we need to keep him clean, healthy, and safe.

We have cried at receptionists, doctors, health visitors and many other health professionals because we have been denied access to the services we so desperately need.

There is a quote that occasionally does the rounds on the support group that we are part of, and it always really resonates with me.

A SPECIAL NEEDS PARENT FALLS DOWN A HOLE

Family/friend: “What hole?”
Boss: “Oh that’s a shame. You can take the day off”
Doctor: “Can you keep a diary of your experience in the hole?”
CAMHS: “We will assess the size of the hole however it may take over 2 and a half years”
Local Authority: “Sorry we don’t have enough money for a ladder”
Charity: “Here is a form to fill in. This will get you on a waiting list for a ladder”
Another special needs parent: “I’m here! I’m coming down there with you, I’ve been down here before and we can share my ladder”

We have had so much support from parents who have been in similar situations to our that it truly is inspirational. I would love to be able to help parents that start their own journeys which is one of the reasons we started our blog. Someone recently reached out to us on our twitter page to see if we could help their friend and I felt like we were part of something bigger. A group of parents who are bound together by being let down by a system that is set up to fail us. To make us feel like we can not help our children ourselves and need the extra support, its dangled in front of us like a carrot only to be pulled that little further away each time.

I just want to give you a little background information on Essity as I had to do a little research before writing this because I had never heard of them before. Essity is a leading global health company that originates in Sweden that develops, produces, and sells personal care items such as baby care, feminine care, incontinence products and medical solutions, plus so much more.

Essity´s vision is according to their website that they are dedicated to improving well-being through leading hygiene and health solutions.

They produce household names like Tena, Libero, Cushelle, Plenty, Bodyform, Cultimed and so many more across the globe
As I have admitted I had never heard of Essity but I had heard of their brands, brands most families have in their cupboards including ourselves.

Thank you!!

On the homepage on their website there is a quote ‘You want to make a difference every day. So do we.’ and usually when I see that kind of thing on a corporate website I would roll my eyes but they really mean it.

Today they have made the extraordinary offer to provide us with some suitable nappies for William until he is eligible for the nappy service from the NHS. This huge company that doesn’t know us from Adam has seen that we are in hole and thrown down that ladder that usually only other special needs parents carry around with them. This massive Swedish company has reached out to a little family from Hull and saved us. I know that may seem extreme as it is just nappies to most people but to us it a necessity and one that we may have been unable to source once William grows out of the standard sizes which will happen any day now and long before he turns four in 6 months.

There is really nothing we can do to repay such an amazing gesture other than to say thank you from all of us. Not just me, David and William but from our full family, from the staff at his nursery, our health visitor and every other professional to whom I have cried to about the unjust 4 year old rule.

Thank You! ❤