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 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 EHCP Process, Emotions

Underfunded or poor use of funds?

I want to start this post by saying that for the first time in a very long time, I am writing this on my mobile so be prepared for more spelling mistakes than normal. Part of my process is to sit at my laptop and write… I don’t know why. It makes my thoughts feel more official and organised and when I’m on my phone it feels like I’m just ranting to my friends via message but maybe that isn’t a bad thing so here goes nothing.

I spoke to another parent today who’s child seems neutologically very similar to William. This family are having to take the local authority to court to ensure their child’s needs are met and it made me think about how many other parents are going through this right now. Thankfully I didn’t have to go to court but we are still schoolless. How many children of school age are without adequate education? How many children are stuck with inadequate education?

How can the local authority knowing do this? Spend funds that could help our children on fighting parents who just want the best or at least the bare minimum for their children? Or do we pay for that in our taxes? The money spent on fighting parents could get more children into the right schools, the right level of 1 to 1 support. I am a firm believer that the SEND departments are massively under funded and when my solicitor asked if I wanted to persue compensation, I firmly said no. Why would I want to take money from an already underfunded department? But what are they doing with the funds they have? Are they using it in the best way possible? I don’t think so! 💸

I’m worried about whats to come for us as it gets closer and closer to William’s loose start date of April/May. What If they name a school that isn’t suitable for William? I won’t send William to just any school. I have to be sure  it will meet his needs, I have one in mind but would happily accept a suitable substitute but what if they don’t offer one. William will be schoolless and too old to continue to attend nursery and thats a real fear I have. I could attempt to home school him and although I would give it a bloody good go, I don’t have the resources available to me nor any idea where to start. We try educational play with alphabet and numerical flashcards and use many sensory items but it’s not the same as school and I’m not cut out to be a teacher and these are pivotal years of his education. I chase our caseworker every month after the monthly allocation meeting to be met with the same replies. ‘No update yet, we will be in touch when there is’ I’m worried about the transition time and if there will even be any. 🤷🏼‍♀️ Both myself and Williams dad may need to take time off work but we can’t prepare until the local authority let us know more details and as someone who needs a list to organise her lists, the lack of being able to prepare weighs heavy on me and my mental health. Some days the panic takes over and all I can focus on is what I don’t know like how much school uniform is going to cost me, will William be able to scope wearing it? How will he get to school? No one will discuss transport with me until he has a named school but what time would it come? Will Williams dad need to be here whilst I work to hand him over? Do I need to provide a car sear? What if it doesn’t arrive? Will he be on a bus or with a PA? I should be happy because I’m in a much better situation than other parents but I’m not. I won’t be until William is settled in a school that can meet his needs

I re-read my post from February last year, school allocations. It broke my heart all over again… almost as if I was sat in the bath receiving that phone call from Elaine to tell me William wasn’t even on the list of allocations all over again. This was the day I genuinely didn’t think I could keep fighting. Couldn’t keep getting knocked down. The 15th February 2021 and I just wanted to stay down. I shouted and cried and broke things! Why wasn’t my kid important? Why didn’t we matter? It took me a while but I got up and I fought, with alot of help and advice 🥰 and we actually got somewhere. Not where we we want to be but almost there.

I almost let them bully me into sending William to a school I knew couldn’t meet his needs. I even met head teachers who were non committal about whether they could or couldb’t support him. They expected me to name them on his EHCP without a commitment and thankfully I just couldn’t do it. The local authority expected me to and pushed me to, making me believe it was the only option for us. That’s not right, that’s not ethical and it was most definitely not what was right for William but it was what the local authority deemed right for them. They should have been putting William first from the moment he was on their radar but they didn’t.

I received a SAR in regard to Williams education and when I looked through it, it broke my heart. Not once did it refer to Williams best interests and meeting his needs, only after the point I gained legal representation did they seem to change their agenda and that’s wrong! Some parents can’t afford legal help or aren’t entitled to legal aid, it shouldn’t come down to money in order to get our children the educational they deserve! The education they need and are entitled to!

I recently read the ofsted report on the Hull services from December 2019 and its a damning read. Here are a few highlights or more accurately lowlights…

There was too little involvement of families in decision making about the services and support they need and insufficient awareness of the resources and support available to them in the local area.

There was poor self-evaluation of service quality and insufficiently focused improvement planning to facilitate better provision and outcomes for children and young people with SEND.

There was a lack of an effective strategy for jointly commissioning services across education, health and social care.

Here’s the full report if you wish to read it.

As always I will keep you all updated with our journey to education but if any of you have your own stories you wish to share please reach out either via our social media pages or our reach out page.

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Posted in Events & Holidays

Autism Night Before Christmas – by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…
But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity
He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned……

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Posted in Brief updates

Lets have a catch up – November 2021

Do you know what I want, what I long for?

Its sounds terrible but I would love for William to call out for me in the night… ‘Mom. Mom. Mom’ for him to need me to help him get settled. For him to want to be in bed with me and find comfort in my arms.

I speak to other parents, some who say their child will not settle without them, some who relish in the closeness and some who refer to their children as a barnacle come bedtime 🤣 some tell me I’m lucky, but I don’t feel it. I have a child that on one hand doesn’t need me but on the other needs me more than children his age usually do.

William rarely reaches out for me for comfort or safety… he finds this himself by going to a safe place on his own and shutting down. This could be his bedroom, the armchair in my living room or his stroller but never in me. Are we right in the need we have in relation to our children? I suppose it all comes back to the expectations we hold based on other families and what we see on TV but my child isn’t like other children and he isn’t like Sheldon Cooper or Joe Hughes and sometimes I struggle to get passed that but on other occasions I embrace it.

Hull fair was here 🎢

I took William with the guy I am dating and his daughter (Little Miss)… we had initially planned to go on the Thursday which is our standing playdate but William was having a great day on the Saturday so we went early which worked out so well.
The fair was busy as it was its first weekend day but since we went for about 2pm, it wasn’t as busy as it would be later in the evening. Both children seemed to love it.

It was the best picture we were getting 😂

Sadly there weren’t really any rides that I felt William would be safe on to ride on his own but he most definitely enjoyed the food and the atmosphere.
I used Williams parking pass for the first time and it made things so much easier, we paid to park but used the disabled section which made getting William out of the car into his stroller really simple, purely because it removed an anxiety I usually have about potentially damaging someone’s car.

As we walked round the fair and watched Little Miss go on numerous rides, William was smiling and clapping his hands with joy. Granted its sometimes difficult to tell because of his face…

Happy face, I promise.

Believe it or not, William wasn’t possessed in this photo but was in fact super happy because he had visited the girls next door and claimed their bed 🤣
This was how he looked during our walk around the fair, this was only his second ever visit to the fair but he remembered the sugar doughnuts very well as you can see.

2019 v 2021

It’s a nice little tradition for me and William but one we can hopefully continue with Little Miss, we both enjoy the lights, music and food. Despite the anxiety that comes with it, it is most definitely worth it, and the highlight of our October before Halloween. I love Halloween, my dad used to turn the lights out and ignore the door much to my mom’s dismay, but I am the complete opposite; pumpkin out and little goodie bags for the kids. This year I had my little vampire to help me.

I want to suck your blood eat your candy

He wasn’t a fan of coming to the door with me but loved playing with the bubbles in his goodie bag and eating copious amounts of sweets. 🍬🍭

Williams Pica seems to have gotten worse and he is even more determined to eat his nappy, after a frantic phone call to 111 due to his poop being full of nappy crystals, I discovered they are none toxic and as long as he isn’t being blocked up by them, then he will be ok and based on previous issues, I am a pro at establishing if he is blocked up… I do not want to go through another regime to clear him out. 🤮 I’m a little lost regarding how I stop him eating it as he is soo determined. During the day I can run interference, but I cannot seem to stop him on a night, he has adaptive sleepsuits (these zip up in the back) and baby grows. I’ve even been putting a pair of boxers of the nappy to restrict access, but nothing seems to stop him, and I don’t feel like there is much support out there for this.

I chased up his school place only to be told there is no update, and they will let me know when they have one, but I won’t be fobbed of that easily and will be chasing each month after their allocation meetings going forwards. We will not be forgotten about. I also chased the sensory pathway referral as that has been a non-starter since it was mentioned in July and am awaiting an update.

William was back at the eye hospital last month for a check up and just like every other time, he didn’t cooperate, and they cannot dismiss him as a patient until they can conduct a full test…. They think all is good but don’t want to take any chances which is brilliant of them.

We have an upcoming paediatrician appointment next week and an impending review with Williams senco and nursery so I will make sure to keep you all posted on those.

No update on wheelchair services although William’s dad is chasing them; they initially offered us a wheelchair which isn’t practical for William, so we asked about a new adaptive stroller instead and are awaiting their decision. It only took a year after the referral to get this far 🙄

And finally, the dreaded DLA renewal has thumped onto my doormat, so I have lots of tears incoming due to how brutally honest you have to be, although you never know, it may be easier for me this time since I started sharing our journey… who knows 🤷‍♀️

All our love as always 😘, M. X

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