Posted in school, Uncategorized

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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Posted in Brief updates, EHCP Process

Shortest post ever

I’m crying, everybody is crying and for once its good news!

William has been accepted into my first-choice specialist school!! 🙌🏼😃🏫🤪💪🏼

I feel this wave of relief, I feel like tonight I can sleep better knowing that the end is in sight, we are not in limbo anymore and he has a school that will suit his needs.

His start date is September, and I don’t know what will happen once he finishes nursery in March as we all know that he is entitled to an education from then and the goal was for the Local Authority to secure a place for the spring term but that’s not happened but at least I know that something is happening and a timeframe for the first time in years, I have a review meeting soon with our Senco and hopefully it will discuss what will be in place until September, so I will keep you posted on that, but the main thing is that he has a school!

L and I are going to celebrate and have a glass (or two) of fizz 🍾🥂

Much Love 🥰, M. x

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Posted in EHCP Process, Emotions

School Allocations Pt.2

I’m writing this in real time but by the time you read it, almost two weeks will have passed and hopefully I’ve composed myself although as I edit this, I doubt it…

 I feel like I have hit a roadblock, like Wiley Coyote has dropped an anvil on me… I’ve cried a lot today and when I say that I mean messy, loud angry crying. I had to take a little bit of time out of work as I broke things and shouted at nothing. The worst thing is… It hasn’t even made me feel better.

On Friday I received a reply to my monthly email chase about Williams school allocation, as you will be aware if you have read any posts previously, William is due to start school in the spring term. This is what his caseworker told me over the phone, its in his EHCP and has been a focal point of all our discussions since. I time my email after the Local Authority have their monthly meeting which is around the 15th of each month, and I usually get a generic reply in return but this time the reply stated that they will be in touch before his transition in September?! September?! SEPT-FUCKING-TEMBER!!!!

Now I want to be quite clear about this, but William’s case worker is an absolute bag of wank is quite illusive, at one point I didn’t believe he existed until he called me to tell me they had agreed that William required a specialist school… I could have kissed him, here appears this man to tell me good news and then follows it up with his EHCP, the news I had waited for, for what felt like forever. Fast forward to now and my opinion is very different. Now he’s that cunty manager that’s sends you bad emails or feedback just as they are leaving the building, we all know the type or see them on television. Out the door, shouting back ‘you need to work a double’
Richard does this, he replies to my monthly emails at 5pm on a Friday and if I have any follow up questions, I have to wait until he’s back in the office, not that he ever replies to my questions anyway 🙄

I have emailed him twice, the SEND team, left messages and have yet to hear back with any clarification, was it just a mistype in the email? Did he use the wrong generic template? I’ve emailed our SENCO and Williams nursery to garner some kind of insight into whatever is happening, and no one can help me, but all said they will try to find out. Surely it will be in William’s file somewhere about what the plan is for him transitioning into a school? I find it hard to believe that they don’t have some kind of CRM system so all parties can view notes etc.

My realisation is that if they fail to find William a place by the end of May then they have breeched the EHCP then it doesn’t give me enough time before September to take them to a tribunal. They’ve fucked us and I genuinely believe it’s on purpose, they know it would never get to court before then and they are using it to their advantage.

I have emailed several people within the SEND department now, Head of, standards officer and the review manager. I’m hoping someone can help me. If I have no responses within the next 48 hours, I will be writing to my local MP.

My anger is akin to that I felt last February, when they did something similar during the allocation process for last September 2021. I cried and broke things back then too. I’m hoping by the time that this post goes live, that I have updated it with good news or even any news at all, hence the delayed live date but I’m not feeling very hopeful.
My anger is almost painful, I feel hot and sad, hopeless, alone and scared but not surprised by it. My main source of anger is that fact that they don’t seem to care about William, they don’t care that he is missing out on education, he has nursery at the moment but from 29th March, they cannot legally keep him there. What happens after that? I work and William’s dad works, do we quit? Do we take unpaid leave? Who pays my bills? Who looks after William? Legally he needs to be in school, but they don’t seem to care. I’m back Asking myself the question…. WHY DOESN’T MY SON MATTER?!

I have had one response from anyone in the SEND team, one, singular… and it wasn’t from Richard (I’m not shocked by this in the slightest but if you still have any faith in the Local authority the please feel free to insert your own shocked face here) the email I receive wasn’t especially useful but it came through at 8.20 the evening after I sent it, I’m sure that’s not office hours so it was very appreciated. The person that replied was one of the email addresses I found on the internet and fired something off to in the hopes they could help. Sadly, they couldn’t as it wasn’t her department, but they did say they would forward on my concerns to Richard’s manager. No reply from her yet either so I’m not holding out hope.

I emailed my M.P, Karl Turner who according to other people is a community champion for his constituents. His office replied the day after my initial email stating they were going to reach out to the children’s service at Hull City Council and will be in touch with me once he has a response. Hopefully they will reply quicker to him than they do me, in fact hopefully they will reply full stop.

The whole situation just devastates me, how can Richard leave it over a week (at the time of writing this line) to reply to multiple emails, everyone else was emailed on the Tuesday and haven’t replied, how if that effective or efficient. I have always had understanding as I am fully aware that they are an understaffed and unfunded department but now my understanding has gone. I have waited patiently for them to do their jobs properly for over 2 years if not more and they have done nothing but let us down, lie to us and intentionally keep us in the dark and a week later, I am asking myself the same question as I did last week… WHY DOESN’T MY SON MATTER?!
If I was keeping William out of school there would be fines, and potentially prosecution and jail time, so who will be accountable now? Who will be in trouble for him not been in education? WHY ISNT HIS EDUCATION IMPORTANT WHEN IT’S SOMEONE ELSE’S RESPONSIBILITY?!

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Posted in autism and covid19, Emotions

There is an App for that…

Is it just me or is being a mom lonely? Is being a mom to a child with special needs even more lonely? Is being a single mom lonely? Or are we all just lonely and on our own different journeys?

At the time I wrote this post (or the scribbles that eventually become a post) in my trusty little blue notebook, I think it may have been the beginning of last year and then I’ve wrote some recently because some of it as usual makes no sense but at one point, I wrote a little list about things that occupy my mind when I can’t sleep which aren’t really valid now.

  • When did someone last hug me?
  • When did William last see so and so? Will he remember them?
  • When can I go somewhere without a lateral flow and PPE?
  • Will I ever need to get fully dressed for work again? (Jokes… I’m on camera 🎥)

I have the answers to all these now but obviously when I wrote them, the tear splashes on the page indicate how upset I was. Especially since number one was about hugs 🤣 and I am notoriously not a hugger. The 2m rule was a huge bonus for me!

 I’m not sure if its Covid and its many strands and the scare mongering that comes with it, but I seem to have become a little very reclusive despite restrictions being lifted. I find reasons not to do things or subconsciously put obstacles in the way.

Covid genuinely frightens me, I was first in line for the vaccines and the subsequent booster. ‘Yes please, inject me with that 5g tracker’ 🤣 each to their own and no judgement for those that have chosen not to but personally I believe that if you haven’t lost someone in the pandemic then you maybe don’t understand its devastating effects and that you are lucky, if in fact anyone can be lucky in such uncertain times. I question if this uncertainty will ever end, if covid will ever fully go away or we can just live with it, but my internal pessimist doesn’t think it will. This is our new normal and not to misquote Shane Meadows but This is England 22! 🏴󠁧󠁢󠁥󠁮󠁧󠁿

Every keeps talking about not been able to hide away forever and not been able to live with restrictions but I seem to be quite content being locked away in my home but I don’t think that’s a good thing, it’s a bit like I have Stockholm syndrome but to myself 🤪 Don’t get me wrong, I leave the house and see people and do social things but not like I used to, maybe its because I work from home and socialisation takes much more effort now, whereas before it was as simple as walking across the road from work and having a cheeky pint and a carvery. Maybe its because I’m a single co-parent now so I can’t just do things at the drop of a hat, it must fit in with work and William’s visitation with his dad and can require military preparation whether it is with or without William.

Everything can so easily be done over the phone or a computer now, what’s happening in the world? You can find out on your phone. What boxset should I binge watch now? Ask Google or check the Netflix rankings. Missing friends or family? Video calls via Facebook or WhatsApp. Need to work from home? There’s Microsoft Teams or Zoom for that. Doctors’ appointments? There’s an app for that (which is much quicker at giving appointments than my actual doctor) Meetings for William? All done remotely. Except for seeing Big Nanna, I would walk through a plague of Zombies for that! 🧟‍♀️

I’m not saying I never leave the house as I obviously do but its so easy not to. Everything is online now, I even met my boyfriend L on Tinder, highly recommended. Him (most the time 🤣) not the actual app, the app is like a meat market but more for fish, catfish that is… it passed some time during lockdown before restrictions were lifted and it was entertaining even though I lost all faith in humanity, some people seemed normal and then BAM! Flat earthers, criminal records, married men, women pretending to be men, couples looking for a third??? And that’s only a small fraction of the people I spoke to. What the actual fuck! I was on the verge of giving in when L messaged me. He seemed so normal, but my replies were terrible as I was expecting him to be a mental case or to try and convert me to scientology or something, how we formed a relationship, I will never know 🤷‍♀️ I think I would give the app about a 2.5 out of 10 but that’s purely down to L💕 don’t even get me started on POF or the mommy friends site peanut 🙄

I guess I bring on some of the loneliness myself, whether its social anxiety, pandemic panic or just laziness. Let’s face it I have explained previously about some of my anxieties around playdates and the like. I love my own company and I very rarely argue with myself 🤣

I was never really a visitor; I prefer people to come to me but then also freak out about people coming in my house and finding things to judge me on.

This is probably the worst analogy ever, but Covid is a little like those adverts you used to see on late night Channel 4 before Eurotrash aired… the ones about sexually transmitted disease.
You’ve slept with Anna, she has slept with John, Jamie, Jack and Steve, therefore you have slept with them too. You kind of have to think that like when it comes to contact with people who’ve had Covid… If I’m seeing so and so for a coffee then I must think about who that person has seen before me and where they have been and so on, its never ending and exhausting 🥱 having your mind working that hard when it already feels maxed out navigating day to day life is simply not possible.

I’m not really sure what the point to this little rant was, I’m lonely, I’m not lonely, there’s an app for everything and Covid is the new STI 🤷🏼‍♀️

Much love 😘 M. x

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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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