The personal budget saga

I know it's taken me forever to update this, but I honestly haven't had the mental capacity to address it.

Charlie's annual review was in July. And it was successful, by far the most successful annual review we've ever had. Everything was staying the same provision wise, with some few changes to the actual content because it was outdated. I felt positive, more positive than any other annual review that I've ever had with Charlie, and I really thought things were on the move.

The way the provision works is that the LA pay for Charlie's speech and language therapy and tutoring, and myself a personal budget that covers the learning support worker’s wages and expenses plus more for subscriptions, activities and learning tools. The personal budget comes into my account termly, in September, January and April normally by the first Friday of that month.

In September, I hadn't heard anything. I hadn't received a response from the EHCP caseworker for over a month. I emailed on the 2nd and was told he was on annual leave, so I emailed the commissioning team (which are generally really good). The commissioning team told me that they needed my EHCP coordinator to forward on some paperwork, of which he had not done. I chased again on the 12th September to be told that there was a structural change in the SEND department and as a result all personal budget requests were being discussed and there were no panels available to decide on the outcome.

I queried when this will be resolved and I was met by a wall of silence. I knew I could not be financially responsible for the learning support worker, I simply don't have those funds available to myself. I sent a complaint through to the department…. I am still waiting for a response! Even now. I then set about trying to find the solution through an alternative route, via both my local councillor and my MP. Both of which were very supportive and really pushed to get the answers I needed. When will we be receiving the personal budget.

The main risk we had, was that the learning support worker (LSW) has known Charlie since he was born. She has a son, who went to nursery with my daughter and there is a 6 year age gap between Charlie and his sister. So the LSW had known our family 2 years prior to Charlie's birth. The LSW was a childm and Charlie went to her, from age 3 until he went to primary school in the September before he turned 5 in the November, as that is how it is done in England. So, she was in Charlie's life, not only as an early years educator but as a friend of the family. Charlie trusts her, and has built up a bond with her. Not only that, she comes with a wealth of qualifications including teaching assistant and Ofsted registered! Not to mention DBS checked, honestly it was the best option for us. This, was now a real issue… Charlie may lose this incredible support because the LA was experiencing a structural change!!

I fought and fought, rang and emailed everyone I could. Copied everyone into emails, and went as high up as the secretary of state for education (she couldn't help apparently). As I have said, my local councillor and MP were fantastic and fully supported. It was only when I was down to the last week of financial support for the LSW that finally we got a response and the personal budget was continuing and agreed. What a relief.

This was the news we were grateful for. The money was paid into the account, and then I was able to pay the LSW. However, still no news on the EHCP. So, even though we have the personal budget agreed, which is fantastic we've got nothing to work alongside in the way of targets and outcomes. So, there I was back emailing. The EHCP caseworker wanted me to review and sign off the document, however, it's not ready. And there are mistakes in it, for one Charlie is mis gendered they have put “she” instead of “he” there's a few mistakes where the word “school” is used, this is incorrect Charlie doesn't have a school so the word should be education. I will not sign this off until these mistakes have been rectified, and of course the learning targets and outcomes have been updated. Therefore, we're still waiting.

We're fast approaching 20 weeks. The guidelines of receiving the EHCP after annual review is 8 weeks. It is long overdue, and actually, by the time it is signed off it might be time for the next annual review! Something needs to change, we should not have to experience this, when Charlie has had SEN since 2017 and had an EHCP since 2018 … we're almost 7 years into this EHCP journey, I'm not sure how it is not something we breeze through every year with no complications, because Charlie's needs haven't changed, at all.

I will never stop advocating for Charlie and it's likely that I have to many years ahead of me yet to continue this journey, which feels both frustrating and overwhelming at times.

Georgina x

A new term, new problems

So, as previously mentioned, but a recap if any one needs…

We had an annual review for Charlie in July, it was agreed in principle but after 8 weeks no forward planning has been made.

We have no draft EHCP, which alone from the fact we have no final EHCP, we also have no personal budget for 2024/25 academic year. So previous academic years meant that we were paid the personal budget to deliver Charlie's EHCP every September, January and April. So far there's been no payment.

I have been chasing this with the LA since August, I had hoped the EHCP draft plan would have been finalised by September 1st and then we would have received the first payment in order for Charlie to begin education.

His “school” is EOTAS which means Education Other Than At School. New terminology I'm led to believe is EOTIS which stands for Education Other Than In School, different LA’s use different terminology. For us though, it will be EOTAS.

EOTAS for Charlie consists of a speech and language therapist (SaLT) for 1 hour a week, a tutor for maths and English for 6.5hrs a week, a learning support worker (LSW) for up to 32hours a week for 39 weeks a year (we use this provision less in the week, so that Charlie can utilise this provision in the school holidays) this is delivered mainly Monday to Friday between 9-3.30pm for the most part. We keep the tutoring and SaLT between the school day but the LSW is extremely flexible and will work up until 9pm at night and over a Saturday if needed, not to mention over the school holidays. All Charlie's community activities, stationary, equipment, subscriptions, Duolingo and much more is also part of his plan.

Now the issue, due to the draft plan not being finalised, the agreement to the personal budget (which pays the LSW wage, along with lots of other things) we haven't received the personal budget for this year so I am unable to provide a huge chunk of Charlie's education! This is a worry for me. We don't want to lose our LSW because Charlie has made some really good progress here, and there are subscriptions that have already left for this term which of course has had to use funds that I had hoped would be replenished.

It's unfortunate that it has come to this, and I am told it's because of a structural change in the SEND department which has caused this, and a direct delay to Charlie's education. It's simply not good enough. This should have been addressed and managed by the beginning of term. We had slightly longer, given that we were on holiday until the 9th, there really was no reason for this to have taken longer. It is deeply unfair and frustrating to everyone working with Charlie.

I have already put in a formal complaint of which they have 10 days to legally respond, and this will hopefully escalate so that we can get an answer before the end of September. That in itself is difficult as it means we will be in limbo for a few weeks, and that's ultimately unfair on myself and the team that works around Charlie.

I can't believe that after such a positive start, that this is where we are. And all due to leadership changes within our LA. It really is frustrating.

Fingers crossed we get an answer soon!

Georgina x

Summer 2024 And September break

There's really not much I can write about summer 2024. Charlie spent a total of 6 days with his dad (I believe) I may have got that wrong! But with how it fell, I think he went twice. Luckily we still had support from the learning support worker as the agreement was to be paid for 39 weeks a year however I use this funding over 52 weeks a year for continuity.

Because of this, I was able to work throughout the summer holidays which was a blessing. I'm not really sure what I would do without work, as it is my sanity! I have been very fortunate to only need 18m off work since going back after maternity leave and Charlie is almost 13. However, days when we didn't have Laura, was very difficult to manage.

We do absolutely nothing over the holidays, this is in part, due to the fact everywhere is so busy and crowded and then when it's hot , the sensory processing overload really rears it's head and causes meltdowns too. Charlie being unable to regulate his temperature can cause some real difficulties for us. So summer, isn't a fun time. Normally I set up a pool, but this year I didn't as I wanted to level off the garden and create a positive space for Charlie to have a permanent pool. Unfortunately, this wasn't successful. I had left it too late and the prices of achieving this was £2500-3000 and that's just too much. I would have to the work myself at a guess to get what we would need for the garden. So no pool.

I have visually noticed the absence in a pool this summer. And I don't want this to happen next year again, so I will have to be more prepared. There's no way that a pool can continue to go on the garden without it being levelled off. And ideally I would like a permanent set up, one that doesn't come down throughout the year. I think we will have better summers if I was able to do this.

All was not lost though, we went on a little break away to clumber park in a lodge with a hot tub which was fantastic. And really got me thinking. A hot tub may be more successful than a pool, especially if it's a lazy spa rather than a traditional hot tub with jets. The idea would be that the hot tub feature is used in the winter and then in the summer it could double up as a pool. It's definitely worth a thought. I will look into it a bit more.

Clumber park was lovely, and we were able to take our dog with us, which was perfect for Charlie as he has a really strong bond with our dogs. Surprisingly on the final day Charlie really came out of his shell, walked the dog, picked up the mess (first time ever) and took some bits to the recycling shed for me (2 lodges away) I really wish we could have stayed longer. I think if we had of stayed longer then I feel his confidence would have grown so much more.

The lodge itself didn't have WiFi, and because of this we struggled. On other holidays we have taken the PlayStation with us, but obviously this wouldn't have worked either because of the lack of WiFi. There was also very limited 4/5g so a lot of the area, we wasn't able to get internet through the data service. We won't stay there again purely for this reason. However, I would go back in an instance, and I am looking forward to time in my life that I am able to. No WiFi, limited signal, nothing on site - just a small shop and cafe, to me it was absolute bliss! It really was the best way to take a digital reset and get some brain space. Charlie enjoyed the hot tub, but unfortunately that was it.

No holidays and breaks away booked at all! How will we cope?

Georgina x

The difficulties in co parenting

First of all, I have to stress that the problem isn't with Charlie's dad, but is around environmental factors. That's the best way to describe it.

Charlie has not been staying with his dad as regularly as first hoped. We changed the routine last autumn to give Charlie more time with his dad every other week. It sounded like the perfect schedule and I was really hoping that it would stick. Unfortunately, it hasn't. I'm not too sure when it changed, possibly the beginning of this summer around June.

Charlie's dad lives a minimum of 45 mins drive away, this is obviously more in times of heightened traffic. Charlie struggles with the drive, he likes to go a certain route (which can cause difficulties when there's been an accident on the M1 or A38, very popular well used roads in our area) and struggles when there are roadworks happening that I haven't prepared him for. I'm fortunate that his learning support worker often makes that journey with him to/from my house. Unfortunately his dad is unable to drive due to a medical condition, and because of that, all the travel is on me.

I have no doubt, that if Charlie's dad lived 5 mins away (which he has done in the past) then access to his dad's house would be so much better, and this schedule would be more successful. Unfortunately, if Charlie doesn't want to go/wants to come home we just don't have the means to support that as effectively as if dad lived a few streets away.

Way back when, when we first split up in 2011 (7 weeks after Charlie was born) I was unable to stay in the house we had. I simply couldn't afford it as a single parent or 3 children aged 9 and under and on maternity leave. I moved house a couple of streets away, and then Charlie's dad found a flat on the very next street opposite a park we had behind our house. We couldn't have stayed there, ours was a 2 bedroom house that I had to downside to, and dad's was a 1 bedroom flat. So it was never sustainable, but location wise it was so perfect! The kids could have walked to their dad's in 3 minutes and having a park so close by gave us as a family lots of enjoyment. If only life was that simple again.

The transition between both houses is also always difficult, Charlie has to regulate himself back into my routines once he's been at his dad's. And the pattern was 11 nights with me, 3 nights with him. For now we've opted for once a month. So that effectively means 25 nights with me, 3 nights with dad. And yes, that's incredibly hard on me, but ultimately easier on Charlie so that's what we'll do.

He is always at the forefront of all my decisions.

Georgina x

Annual review 2024

We had Charlie's annual review (AR) on 17th July 2024. This was with the new caseworker, elective home education officer (more on this later) speech and language therapist, learning support worker, myself and Charlie. It was supposed to be on a day Charlie was with dad, however attendance to dad's hasn't been good… more on this later.

So, first thing I recognised was that there was a person there from the home education team. I was a little confused about this, for starters, no one from that team had ever attended before. And secondly I had not been told this in advance, so suddenly a new face on the screen threw me! Luckily it's virtual and Charlie doesn't really get involved, but had it been in person that would have really upset Charlie. So the home Ed lady asked me if I had completed a report for the annual review, I answered no. It is not my responsibility to write an educational statement on Charlie as his education is delivered through EOTAS. This means I am not responsible for it at all. I am not electively home educating, I haven't chosen this, there are no schools in this area able to meet Charlie's needs and his anxiety means he's unable to travel out of the area.

Anyway, I politely told her, no, I hadn't made a report because his education is delivered through EOTAS. I'm not sure she was satisfied with this answer, but the answer is still the same. Having Charlie at home with me meant that he could pop his head in every now and again and show his face. The one thing that affects me most about this process is that these people in the SEND department make decisions and actions on Charlie's EHCP and education without ever meeting him in real life, and I think that's really sad.

So we went through the paperwork, all done online, there were quite a few edits, more than I thought there were to be honest. And in the end, it looked as if I would need to agree to a new final plan as the edits meant that the content and targets had changed. So the process for annual review is that after this has taken place, the LA have 8 weeks to send you out a draft EHCP, the parents/carers then have 15 days to agree to the draft, disagree or the LA can cease the plan at review.

We are now on week 8.5 (9 on Wednesday) and I haven't received even the draft plan yet. I had hoped, promised even, that the plan would be updated by the end of July, personal budget agreed - I signed the personal budget paperwork on July 22nd, 5 days after the AR. I was on time with everything. We are still waiting for a decision, and I will update on this in another blog post.

Something that started so positive, unfortunately has not been successful. There are some real issues at the moment, and I will follow this up. As well, Charlie not going to his dad's house too, which is a new challenge that we have to navigate.

I'll keep you posted!

Georgina x

Disneyland, Paris - March 2024

Back in October 2022 I put a deposit down on a break away for my birthday to Disneyland Paris. I had really wanted to go for my 40th birthday in March 2023 but I couldn't financially manage it unfortunately.

We went for 3 nights Sunday, Monday (birthday Monday) Tuesday, leaving 4pm Wednesday. I picked an early flight Sunday to get the most out of our time there. For this, we slept at a hotel the night before. So that was 4 nights away. In hindsight that was too much with such an action packed few days. It should have been 2 nights and 2 days, that would have been better.

We flew from London Heathrow, the flight to Paris is only 45mins long. The journey to Heathrow just over 2hrs, it made the best sense to do it this way. Because our flights were first out, last back it meant security was pretty much non existent. Of course, I could have got special assistance and if I thought I really needed it I definitely would have done that, but on this occasion I didn't think it was worthwhile. We always get to the airport with the minimum time we can get away with. And this has been the first time Charlie had flown since October 2022. Although it was a positive experience he has said he doesn't want to fly short haul again it was too much for him. This I feel sad about, however he does say he will travel to Japan one day!

We stayed in the Sequoia Lodge. I wanted to stay there because it looked peaceful and serene and was overlooked by a forest. But we only used the Disney magic day pass once while we were there, so to me it wasn't worth it. However, the partner hotels were coming up at a similar price and at least we could walk to the park from the hotel which was often easier and quicker than the shuttle bus.

Sunday and Monday were good days. We got round so many rides. Checked in at the hotel around 10.30am on the Sunday and headed to the park. Our bags went in the luggage store so we were free to do as we pleased. Charlie had a ride access pass which meant all of us (4) got on the rides with him. Only 2 people were able to join him for shows and only 1 person was able to join him in a parade.

I think initially the experience was pretty overwhelming, as we caught 2 mins of a parade and Charlie thought that was it!! He had seen a parade, not quite son. So thinking back now he probably was overwhelmed. The pass made a huge difference to those days in the park. We barely queued really and could take turns sitting out rides if needed with no real issues.

Tuesday was a bit more challenging. We used the pool, which wasn't in the hotel but slightly off complex. In hindsight, I would definitely get one within the hotel as Charlie really struggled to navigate through that and became seriously dysregulated and he struggled to balance himself, but eventually he did.

Wednesday the final day, was a transition day and Charlie really struggled with this. Transitions are always very difficult but this was to the extreme. Challenging behaviours purely down to the anxiety of transition and the day. However, we pulled it back around lunchtime headed for the park and still got a couple of rides in. Then the rain fell so we headed back to the hotel for our transfer (€80 euros each way). I am incredibly grateful to be able to have a private transfer as the thought of putting Charlie on public transport and then back on the flight really concerned me.

Just in case any of you wanted to know the break down of our break:

4 x Adult park tickets and accomodation (Disney park) - £1,200

Flights - £380 rtn for 4 people, flying with BA from Heathrow. BA have a very generous luggage allowance of hand luggage + 10kg carry on!

Transfer - €80 each way.

Drinks - we took our own water bottles and filled up in the hotel in the day. If we came back to the hotel (in the afternoon for a sleep sometimes) then we would refill before going back out. Took the little juice bottles with us (50ml) to add some flavour.

Food - we didn't have a food package, but we ate at McDonald's, Earl of sandwich, Casey's, Annette's and rainforest cafe. Meals varied massively but there was a place within the backlot of Disney studios that did breakfast for €7 you got a coffee/hot chocolate, drink of orange juice and a pain of chocolate. We also went to Annette's for breakfast and that was €15 for a full English breakfast, coffee/hot chocolate and orange juice. We did try and eat at a variety of places and always found something to eat on the menu for everyone.

This was our 5th time in Disneyland (Charlie's 3rd) going in 2007, 2009, 2013, 2015 & 2024. I've noticed a huge difference in the volume of people and the lack of characters walking around. I'm imagining it has something to do with COVID but the lack of characters was really noticeable and for that, I'm grateful to have attended in those early years and have those experiences.

Myself and Charlie are going away in September to a log cabin in the woods with a hot tub. Doubtful we will get a pool this year so I am really excited about that!

Georgina x

We have a new caseworker.. we're the last to know!

I've been religiously emailing the caseworker monthly, sometimes weekly. There's a lot of holes in the provision and a lot that hasn't been addressed. I had no response, not since September. I did think it was strange but there was a lot of email bounce backs saying the caseworker was on annual leave, so I didn't really think too much of it. But annual review was coming up and it was then playing in my mind.

Last week while I was at work I missed a call, there was a message left on the answer phone, of someone wanting to know if Charlie's EOTAS was continuing for the next academic year. How bizarre, of course it is! I emailed straight back and asked if the man who left the message was out new caseworker. He emailed back and said he was, and that he needed to clarify that Charlie's plan would continue for the commissioners. Which of course it will.

Apparently we were supposed to receive an email given the new caseworker details. I didn't receive it though, because if I had, then I would have been on it! Getting on top of the annual review paperwork, the budgeting and costings. There will be some minor changes with the EHCP this academic year, and I do like to get on top of everything just so I can manage the annual review. It's such a complex agonising experience for parent carers.

Now we have the details of the new caseworker you bet I'll be on his case making sure all the paperwork is up to date and Charlie gets the plan and education he deserves. The countdown is on now for annual review, but I know I won't chill until I know this provision is in place in September!

Georgina x

A new arrangement. New routines.

Last summer Charlie's dad started a new working schedule. It meant that he had a few days off every other week in the week. And asked me to work with him in co parenting with this. I wasn't keen, because I worried about the impact this might have on Charlie's education package and how the change of routine would affect him. But, having consistent stable contact with dad is just as important so I had to weigh this up and choose it.

Charlie's dad has a family holiday booked so we decided we'd start the alternative week pattern in October after the holiday just for continuity.

It's been 5 months and unfortunately it's not been as successful as I had hoped. The transition between mine and dads is hard for Charlie and 3 days every 11 days is just not long enough for him to transition into dad's before having to come home and then transition back to me. As a result, Charlie tend to miss every other time at dads, and end up with me for 3 weeks and then dad's for 3 days and then back to me. Maybe this pattern is more reliable and comfortable for Charlie I don't know, I'm not sure. We will see how we go the next 3 months and then review over the summer.

The issue with this, is I got a bit greedy with my “new” available time to myself and booked lots of day tips - mainly with my older children, and activities in which now I have to re-evaluate because the schedule is not secure with dad. The other issue is sleep! I use the days Charlie goes to dad's for some much needed sleep!! Charlie can be awake for between 20-35 hours at a time, I'm honestly not sure how he does it!! So when he doesn't go, I end up again being sleep deprived that then impacts my life and job. Charlie's ok tho, as when he drops to sleep, he literally drops!! And has the best sleep! I know this because he tells me all about his dreams hahaha.

I don't know what the future holds in regards to the schedule. But honestly I do think it would be best for Charlie to have a full 7 days with us each and then he would only be transitioning twice a month between houses. Unfortunately this is very unlikely to happen as work schedules just don't align in a way that would make that a possibility.

It is a shame, more so for Charlie because that transition day and journey to dad's can be so difficult for him. Dad also lives 30 miles away and I think that also plays a huge factor because Charlie hates travelling! I can remember a time when 5 minutes in a car was too much! At least he tolerates the drive to dad's - but only if we go the “right” way!

We've got to be ready to change and adapt as needed.

Georgina x

A new term. April 2024

I know I've been rubbish at updating and blogging, it's been hard to keep up as my day job has taken over.

I'm not sure what the last education update was, but we had an annual review July 2023 and an agreed EOTAS package that included a learning support worker. This is a new position and Charlie gets up to 32hours a week for 39 weeks a year. We are incredibly fortunate that the LSW is fully flexible and can work over the full 52 weeks a year, therefore she covers 24hrs a week over around 48 weeks a year. Having some weeks off in school holidays for her own family.

In October our tutor left. Charlie has no tutor from the half term after October holidays up until 1 week before Easter holidays. It took that long to sort out! I was getting increasingly frustrated about it. Communication is still very poor. I've not received a single email back from the caseworker since last August. It's exhausting.

The speech and language therapy is going really well! And Charlie's full education package is 31.5hrs per week and that includes LSW, tutor and speech and language therapist sessions. And if I'm honest that's enough. He won't be able to manage any more and on some occasions he doesn't manage those hours each week as the sleep pattern affects his learning so much.

But the good news, the team around Charlie is solid! He enjoys the company of all the professionals that work with him and he massively engages while with them. They all work together between themselves so and all have the same outcome to support Charlie's learning and development.

There are gaps, of course there are. But right now it's the best it's ever been and I am so so thankful for a team around Charlie that wants to help him achieve his learning outcomes. We are due our final EOTAS payment in the next couple of weeks and then there will be an annual review, probably in July and I imagine we won't have any changes to the actual staff on the package but we will have some some changes to the elements in the package there are things that haven't worked and so there is no point in keeping them in the plan.

The administration of the EOTAS package is incredibly time consuming and falls on me. I have to source, cost and budget the plan the only thing the LA does is speech and language therapy and the tutor that's it! The rest of it falls to me, all the invoicing and payments for the LSW, all the expenses, activities, sports, languages and day trips they are all my responsibility to organise and it's big work! It actually takes quite a bit of time, and I don't get paid for it… I really should do!!

But I do it for my boy, because that's what's right and that's what I would do a million times over.

I will try and write more! I am so sorry this part of my life has been so lacking.

Georgina

The cruise ship. April 2023

So we arrived in the cruise terminal all ready to embark on the ship, this marvellous 17 deck ship that could fit half a small town on board and we were stopped at passport control. I hadn't got a letter from Charlie's dad to say I was able to travel alone with hiim!! This is a requirement for this particular cruise ship.

I've been travelling abroad with my children alone since 2006. So you can imagine my surprise when I was asked to provide evidence I was allowed to travel to the UK - my home country anyway?! Make it make sense! Luckily Charlie's dad was able to provide me the documentation I needed over WhatsApp of all things! But it was signed and we were let on board.

It did not disappoint. The ship was magnificent. A real piece of art. Stunning.

"MSC Virtuosa - Cruise Ship | MSC Cruises" https://www.msccruises.co.uk/cruises/ships/msc-virtuosa

We've never been someplace so beautiful. We dumped our bags in the room. Again, didn't disappoint. The cabins were like hotel rooms. So luxurious, a far cry from the cabins on the ferry! Then, we went to grab some food, from the buffet which is open 24/7 (pretty much). It is food you would expect to see on a buffet. Next we headed back to the room to get our swimming stuff and head to the pool. Charlie had a great time in the outdoor pool as we didn't realise there was an indoor one!! When we went back he was exhausted!! Fell straight to sleep!!

Around 8.30pm we had reservations for food. We'd already started sailing by then, and Charlie woke up just in time for our food reservation. We had a lovely 3 course meal (provided in the price) in the restaurant. Which was lovely, a really nice expererience. And because it was late it was pretty empty so really quiet. After our food we went to explore some more.

The ship is really big and there is so much to do. Lots of activities, free kids clubs for the younger ones. VR headset games, racing games, sports games, other arcade games. We were in there until around 11pm when it closed. We walked through the gym and where the indoor pool and spa was. There were also jacuzzis. We headed back to the room and watched a movie.

There was so much to do on board. Lots of shows, cinemas, operas, so much!! Honestly I could not believe it. We had plenty to do. There was ice cream vendors. Singers, pianists, there was even a nightclub, cinema, west end show and opera. Some of it you had to pay for. Exploring the ship was fun too.

We watched the film, bullet train by renting it out on the TV in our room. I'm not sure what time it finished but I imagine between 2-3am. Charlie couldn't sleep so we got up and walked the corridors of the ship. This time, it had a different feel to it. The ship was ghostly quiet. There was no one about, whereas on the ferry it was quite busy at that time in the morning. On the ship, there were the staff members and that's all. Lots and lots of staff all working so hard to make the ship sparkle. And that's what I would say really the ship was sparkling.

I'm not sure what time Charlie began to tire, but we headed back to the room and got some sleep, this time he did sleep, and I needed it so I was very grateful!! We had a lovely time and other than the travel and slight issue with embarking (I will take a signed letter from dad next time I travel with Charlie) it was blissful. I think the surroundings and environment had a lot to do with that.

We had a little bit of trouble getting off the ship. Went to disembark and was stopped! We hadn't gone through passport control!! I was unaware we had to do this, because when we were being told (in a mandatory meeting that I missed because Charlie was asleep after swimming) I had missed the announcement. We had to trek all the way back to deck 17 and go through passport control. Which was a quick process thankfully. But Charlie didn't really get it .. thought we could just enter England because we have “English accents” I've tried to explain it to him, but in his very literal thinking he doesn't see the problem. Luckily his disappointment of not being able to get off the ship immediately was aimed at passport control and not myself!!

We got off safely, and headed to the train station. It was a very long train home from Southampton (only £21) though, and it would have cost a lot more than that in petrol and parking. Charlie says he had “sea legs” for the next 2 days.

Has it out him off? Has it heck!! He's already chosen his next cruise ship

"Anthem of the Seas | Cruise Ships | Royal Caribbean Cruises" https://www.royalcaribbean.com/gbr/en/cruise-ships/anthem-of-the-seas

Although it'll be several years before I can afford this gem!!

Hope you enjoyed reading about our cruise trip.

Georgina

The journey to the cruise ship - April 2023

Shortly after the Easter break, Charlie and I went on a cruise. The idea was simple enough, but I definitely could not have foreseen what was going to happen. I decided to get the cruise for just one night, back to England - from France. This was because, in Charlie’s mind, if he doesn’t like something, and is dysregulated then he has to stop/get off. So the narrative was simple. If he didn’t like the cruise ship, the next port was home. We were getting off. So, I booked it.

The plan was to fly to Paris the night before, stay in Paris overnight and then get the train to the ferry port for the cruise ship the day after. We got an incredible deal. £18 flights to Paris, and then the train the following day was £20 for us both. We did have to stay in the hotel therefore that cost a bit of money £50. The night on the cruise ship was £59 each which is what we would have paid to stay somewhere expensive such as Alton Towers hotel or a spa break with a swimming pool (more on that later). That was the plan, seemed simple enough. Lots of preparation, looking at maps, choosing routes etc went into this. We have a railcard so train travel is reasonable, we booked airport assistance.

However, this did not go to plan. Unfortunately, on our way to the train station to catch the train to the airport we were told the ship couldn't dock in France! This was purely because the French had some quite heavy strikes going on and the cruise ship rang us to tell us we were now departing from Zeebrugge in Belgium and that a coach would pick us up from Paris airport at 8.30am (they knew we were travelling the day before and on our way to Paris). I made a split on the spot decision to abandon the journey to fly from Manchester airport and head to Hull port instead to catch the ferry to Belgium. I had done this before with my older children in 2006 caught the ferry to Belgium, so I thought I had it sussed. We had to be there 90 mins before sailing and it was a 2hr train journey. I booked the cabin (overnight on the ferry) and headed back in to the train station to get a train to Hull.

We'd missed the last train!! There was a taxi rank across from the station so I enquired about a taxi. It was an eye watering amount. But I had evidence of the ship not docking in France and the strikes to be able to claim back on the insurance. We darted up north 1.5hrs on the road to get to Hull panicking all the way, worrying we wouldn't make it for 5pm for a 7.30pm sail. We made it at 4.56pm my heart was beating so hard. Keeping calm and not wanting to worry or dysregulate Charlie was definitely the hardest part. He'd had to cope with so many changes. When we got to the desk it dawned on me I had booked the wrong ship. This one was going to Rotterdam in the Netherlands not Zeebrugge!! The ferry to Belgium had stopped a few years earlier. We had come to far to back out now! Let's just get on that ferry.

We boarded the ferry, and it was lovely, staff were lovely and we went straight to our cabin, dumped our stuff and set about exploring the ferry. We watched the sunset. Was out on the deck until past 9pm. Charlie loved the feeling of being on deck, it gave him the right level of sensory feedback being out there. We headed back in and tried to sleep.

This was the hardest part. We couldn't sleep. It was choppy, beds were uncomfy. We couldn't settle. So we got up and walked around the ship, it was around 2am and there were many many people up. We were not alone, lots of people (mainly what looked like lorry drivers) couldn't sleep. So I felt comfort with that.

We were docking around 7am, and had a transfer from Rotterdam port into actual Rotterdam centre. We headed back around 5am to try and get a little bit of sleep before docking. I had no idea once we got into Rotterdam what I was going to do, and my phone didn't work abroad!! When we went to Lanzarote in November 2022 it wouldn't either. We headed into Rotterdam on the coach, it's around a 20min transfer and cost around 10 euros. Luckily I was able to get a refund on all my train tickets online. So the train ticket to Manchester airport and the train ticket to La Havre Port in France from Paris. We headed into the train station at Rotterdam and found a train that would take us to Zeebrugge with just one change!! It would take 3 hrs but we would get there well before when the ship was sailing at 7pm. We needed to be there before 4pm. So off we went.

There was one change, quite soon into the first leg of the journey, so because we hadn't had any breakfast we stopped off there and left the station in order to get some food. If was a town just on the borders between the Netherlands and Belgium. Next, we headed on the 2nd train which was substantially longer and Charlie fell asleep, which was actually quite nice. I bought a book with me, so was able to read some. I was shattered but petrified about missing our stop, or needing to provide a passport or ticket. I needn’t have worried. Because once we landed in the Netherlands we were free to travel around Europe. But I definitely couldn't have slept. Charlie definitely needed it.

We arrived at Zeebrugge, and I assumed that it would be self explanatory where the port was. It was not. So we walked round and round trying to find it. Charlie was getting more and more dysregulated, I thought he had done so well but I do think he was at his limit now!! He was ready just to get on that cruise ship. Then in the distance, we saw the emblem of the cruise ship! Charlie spotted it! It gave us the push we needed to get to the ship. And then realised we needed to go to the cruise centre not the normal ferry port! No wonder we got lost!! Anyway, we saw it… it was in sight! We were almost there, or were we?

I will continue on another blog post.

Georgina x

Family Fund

I have recently blogged about our trip to Centre Parcs, that could not have happened without the voucher we received from Family Fund. I will include a link at the end of this blog. We were given part of the cost of our trip in the form of a voucher code from Family Fund. Without it, we would never have been able to afford to go, it has always been out of our reach.

We have been very fortunate to be in a position to have support from family fund, and here is a list of the things we have had from them so far.

1. Sensory Toys worth £500

2. Garden Makeover £650

3. Swing set £300

4. Paddling/swimming pool £100 (voucher from argos)

5. Holiday Voucher for Centre Parcs £450

It is unlikely that we will qualify for the next round of applications based on my current earnings. Having a family fund voucher, support comes with restrictions. And I am now back in a position to support my family, and I earn over the threshold allowance for support for family fund.. Please check out the link below to check your eligibility.

Family Fund

Without a doubt we would not have been able to afford our break in centre parcs without the support of family fund and we all benefitted from it, even Charlie’s siblings.

Georgina

Centre Parcs for my 40th

This year for my 40th we went to Centre Parcs. We’ve never had a centre parcs holiday, purely because of the expense. But, we had a voucher kindly gifted to us by Family Fund. I will write an additional blog to Family Fund. With the voucher, it meant that the cost was dramatically reduced and that it fell within our budget so off we went. We also took our 2 dogs.

It was only a weekend, but for a taster, and the fact we had never been before, I think that was enough. Our days consisted of dog walks, food and the swimming pool. Which was definitely the highlight of our trip. We also managed to squeeze in bowling, yoga, gym session, laser clay shooting. Firstly, the ban on cars was the best present I could ask for. Charlie has zero awareness of danger and will just run out into roads randomly. Also, he struggles to wait. He will just go! Without a second thought to anything else, he gets it into his head and just goes. And because of this, it means I find it really hard to keep him safe when we are out in the community. It is even referenced in our latest support package that Charlie needs 2:1 in the community. So the no cars rule was such a benefit to us and well needed.

The other activities were great, and Charlie came first in his laser clay shooting. He not only beat his older brother, but several other grown adults and it gave Charlie so much confidence and really raised his self esteem. I was so pleased about this as Charlie’s anxiety leads him to have such low self esteem. Anything that can raise it is definitely a blessing.

The swimming pool - this was the best part of our trip. All of it was amazing. The pools, the tempreture the slides, the outdoors. Especially the outdoor pool. Charlie felt that the outdoor pool had the right sensory feedback for him, being in the warm water and having the cold air on his face was perfect for him. Charlie spent 3 hours minimum every day in the pool. My other children, not so much. They enjoyed it and had the best time there, but could leave it if they wanted to. But Charlie couldn’t he focused his whole day on going to the swimming pool that is all that mattered to him. We definitely got the best out of the trip.

There was only one hiccup. And that was we hadn’t booked anywhere to eat Sunday night. We got out of the pool around 8.30pm and that meant by the time we were ready for food, everywhere was shut! In the end we ordered from a local takeaway and they came to deliver. That is definitely something at we would have to bear in mind the next time.

Would we go again? I’m not sure. It is extremely local to us, but so expensive. I would have to look hard for an alternative, and it would have to be local too. Charlie hates travelling at a distance, and I find it difficult to travel with him on the most part. So that will always be key in our decision making. But if I am honest, I don’t know anywhere will ever match the incredible swimming pool that was there. It really was something else. And I would need to think very hard about taking Charlie somewhere that didn’t match those expectations. Although we do have another caravan family holiday in Wales in August so we will see!

Up next, a blog on the Family Fund and then I will be sharing with you all our cruise experience.

Georgina

August Family Holiday - Rhyl, Wales.

I planned a family holiday to Wales. It was supposed to be me, my three children, my partner, his two children and my two dogs.

First of all, my older two children dropped out so then it was just me and Charlie and then my partner and his children. And then of course the dogs. It was a great caravan, plenty big enough for us all so that was good, but it just didn't go to plan.

Charlie lasted 1.5days there. His dad was supposed to have him that week, it was his dad's week but this holiday was booked and paid for before the contact arrangements changed, I will explain more in a different blog. So, because he was not going to his dad's, his dad then booked some overtime shifts so it was really difficult to juggle what Charlie needed at that time and what the solution might be. I ended up driving home, sleeping overnight at home, driving to dad's and then driving back to North Wales, and then driving home the following day. But it's what Charlie needed so that's what we did.

The main issues of the holiday, which was a caravan holiday and something that we hadn't done for many several years, was the noise. I totally took it for granted that Charlie wouldn't cope with the noises within the caravan. We could hear every footstep and door closing, which then meant Charlie could hear it times 100. Charlie has auditory processing disorder as well as sensory processing disorder and that means he can't filter out sounds and hears absolutely everything. A caravan environment is not right for us.

This was a blessing in disguise really because previous to this, I was considering getting a caravan on a site so we could have a permanent stable holiday home that we could travel to in support of Charlie. When we go somewhere new it takes him around 48hrs sometimes longer to really understand and settle into his new environment. The first couple of days are always make or break and the first night anywhere is always the worst and impossible. Because of this I thought, a caravan permanently that would be familiar to him would be perfect. But after this experience I know it would have been a complete waste of money.

I know now that it's not possible to do a caravan holiday with Charlie again so the plan for now is Disney in Paris next March (booked and paid for in October 2022) and then a centre parks style break. A lodge in the countryside with a hot tub. Those breaks have always been really successful so that's what I will aim for in the future.

Georgina

London - February half term holiday

I actually started writing this blog months ago.

In February half term I took Charlie to London. It was an anxious time for me, but Charlie desperately wanted to go. He had only been as a baby. I actually bf him on Hyde Park in the rain as I could not find anywhere else to feed him. He was 4 months old and we has a family holiday down in London/Windsor. I’m not sure how it snowballed into a day trip, but nevertheless it became a project that he, and his tutor worked on. They built a presentation of all the places he wanted to visit and things that he wanted to do. Food, that he wanted to eat.

My daughter tagged along with us, as she was off on half term too. The train ride down there was very uneventful. Which pleased me! We booked our train well in advance, so had seats. The train was busy, possibly because it was half term so I did wonder if Charlie would manage it. But for the most part, his head was in his phone on a game. As we drew closer to London, he became aware of his surroundings and how big it really was compared to our little Midland city.

In London, we headed straight to the Park, St James’ Park. Charlie didn’t like the tube, it really took him by surprise. I hadn’t bought any over headphones or ear defenders, we asked in a shop and it was £40!! So, my daughter kindly gave her beats headphones to Charlie. I am so pleased she came along! We went to the cafe, and met a friend of mine, in the cafe, I am so blessed to have good friends in many cities around the UK. Because of this Charlie and I were able to go to the Twist Museum, recommended by a friend, and my friend took my daughter to Waterstones (because she is a book worm) and then to a portrait gallery, which she loved. We went for food, which we ALL enjoyed, it was very Amercianised and this is something that Charlie craves, he craves to have American lifestyles.

After food, Charlie had had enough. He wanted to go home. although, enjoyed his time in London 5hrs was more than enough. His general tolerance on day visits anywhere is 3hrs and then he is really at his limit. My daughter has been to Daunt books, and it did mean we missed the train. Charlie, was upset and got into a bit of a state, I had advanced tickets, but because of my daughter’s ticket, we were stuck. I had to pay out another £40 for an additional ticket. So it was a good job I never bought those headphones.

All in all, Charlie actually had a great day, he was in awe of London. He saw some lovely sights, the Palace, Big Ben, the Big Wheel. All stuff he wanted to in his presentation, so we went there with an agenda and we managed to complete it. There is no better feeling for a PDA child than that. Charlie told me that he felt at times that London was “quiet”. We had previously gone to Nottingham on a Tuesday afternoon (as I don’t work Tuesdays) and Charlie hated it. We walked off the bus, I had taken the bus that day rather than have the hassle of parking. And down one street, and Charlie panicked. He hated it, it was too busy, too crowded and he started to become very dysregulated. So as you can imagine, the thought of taking him to London, absolutely terrified me. But he was fine! He said, although it was the capital, the buildings were huge, they were so big they were spaced out. It made the area around him feel bigger. It meant that he hadn’t felt closed in. And this I think was definitely was a defining moment in his confidence. He would like to travel there again at some point. And this is fine by me! I want Charlie to experience the whole world.

And onto our next adventure.

Georgina x

Finally Forty

Last weekend I finally celebrated my 40th Birthday. I am unsure why but I felt like I had been waiting forever for this day, and I was sick of being in my 30s!! I had a great time, saw Fatboy Slim in a venue down in Bournemouth and spend the time with my eldest child aged 20.

Being a parent carer means my down time is very limited. But it is essential. And I need to take time out for myself when I can. Spending time with my older two children is often difficult because Charlie’s needs are so severe at times that I struggle to balance 4 people (myself included) a job, a home, 2 dogs and a guinea pig! Sometimes, life can be overwhelming and I absolutely drop the ball sometimes.

Being away this weekend, reinforced in me the need to take care of myself and spend time with my other children when I can. Charlie was absolutely fine. He stayed with his dad, and we have finally agreed that he will take Charlie for 2 nights next month. Wow! This is definitely progress for us! It has definitely taken it’s time to reach this level, but I am here for it.

Happy 40th to me!

Georgina

Progression feels good but we've a long way to go.

Hey all! Feels like forever since I’ve done a blog. It’s not, of course, but a lot has happened in our lives and I think that busyness and all the news we've received lately has given me a misconception of time.

Firstly, tutoring is going well. I'm so pleased with Charlie's progress. He really does amaze me every day. I can see him building confidence with learning and using language and skills that he’s not done before which is something we will encourage, myself and the tutor.

We’ve had a response from the NHS complaints I put in last year. It's been found that the NHS department, specifically the camhs team were at fault and we were treated unfairly. The complaint was upheld. We were given an apology and it's down to me if I want it to go any further. This complaint has taken 6 months. I’m not sure at this stage. And Charlie is now back on the waiting list waiting for assessment. So i’m not sure whether it will be beneficial to do this. Hopefully, Charlie will be triaged by camhs and will enter a treatment plan. Only time will tell, but this started in 2019. As part of the evidence I had to gather all our appointments from the point of referral, and it was a lot!!

On the subject of complaints. Our LGO complaint is now in draft and once the decision is published I will share it with you. But it’s extremely good news for Charlie.

We have started with a new speech and language therapist. Although, we're not allowed to use speech and language therapy as Charlie doesn't like the wording! So she's our emotions communication officer. We did 40mins last week which was incredible as I predicted he would only manage 15mins. We're meeting again this week and then it’s our half term.

As usual, our half term is different to everyone else's!! Very annoying. Luckily, our tutor is not going to change his days/times so they'll not be a disruption to next week's learning. And then during half term Charlie and I have a big trip! We're going to London! I've taken a day off work either side of this, so that I can fully support Charlie. It's a really big deal and we'll see what happens. I will of course bring you for the ride!

I almost forgot… coparenting is being fabulous. Charlie now goes every 3rd Friday to his dad’s to sleep overnight! It’s an incredible achievement and we’ve worked so hard, all of is together to make this happen. I'm so proud of us, and Charlie of course!

Georgina x

Tesco Community Fund campaign has closed.

Some of you may know, I applied to the Tesco Community Fund to help support my plan for a community calendar. The campaign has now closed and they are counting the blue coins.

We had some very tough competition! We were up against St John’s Ambulance for starters. So I am unsure if we will be recognised enough to win but I am of course grateful and hopeful that we will achieve something.

Hopefully, we won’t be waiting too long to find out the result and then move on to the next stage of the calendar which is designing the art work and supporting the charities to pick a month where they want to be featured.

Lots of exciting updates coming from the calendar, for now though, thank you so much Tesco for choosing us to be part of the community fund project.

Georgina

Winter Catch up 2023

So we are now 3 weeks back into the education routine? I do have lots to share with you but for some of it I am unable to share yet.

Charlie has settled back really well with his tutor and he is currently planning a trip to London with him. I mean, not physically with him but as a project. If you have followed us for a while you will know that Charlie struggles with any form of education and learning and anything he does is a bonus. I am under no illusions regarding his struggles.

So far, he has 6hrs of tutoring a week. He is supposed to have so much more provision than this, but it has been difficult to secure it and deliver it. Other parts of his EHCP include speech and language therapy which has not been active since September, an occupational therapist, again we have not had input since September. Drumming lessons which was difficult to engage, swimming lessons that was not quite manageable for him. The swimming and the teacher was fantastic, but it’s all the other stuff, the dressing and undressing Charlies really struggles with this, especially when his body is wet. And this causes quite a high level of dysregulation and that is not fun for anyone.

He is also supposed to have equine therapy, that has not been organised yet. Mentoring, again waiting to complete on this. And further to that he has trampolining and rock climbing. This we are currently accessing around once a term. So as you can see we still have a lot more to access and a lot more to get involved in the community and my heart is praying that this will happen and Charlie can finally have some well needed education package but some enrichment activities which will help promote his self esteem and wellness.

We’ve had a good Christmas, it was calm and easy going. We did our own thing (as we normally do) and don’t stick to any commercial activities. We find them too difficult and stress enduring. I don’t know why but the energy around Christmas changes, everything is so busy and stressy and not how we live our lives at our low pace, low demand lifestyle.

We almost have a conclusion to the LGO complaint I submitted last year. This is positive news, and I must say, it is definitely in Charlie’s favour.

Myself, I have a busy few weeks coming up. Work has some very tight deadlines I need to stick to so I have to stay focused and work hard for the next few weeks, before we take a well deserved break to Centre Parks. We’ve never been to Centre Parks before so I am really looking forward to it.

Charlie also wants to join a gym. So we are looking at some options and seeing what will work best for us. Because of Charlie’s unpredictable nature I don’t want to get something that will not get the full use out of it.

The calendar project is moving forward after being stagnant. The Tesco community fund campaign has now closed so we are waiting for the results of that. We still have so much to organise and sort out. 9 months until launch but I am sure it will fly by!

Charlie has a new interest in cruises. So, if funds allow we will be off on a mini cruise UK based to begin with. Slow and steady always wins our race!

I think we are all caught up for now. Looking forward to lots of exciting things this year, but, DLA is up for renewal, we will have our first EHCP AR under Charlie’s EOTAS plan, and I will have to audit the work I do in order to demonstrate my capabilities in my working role.

Hope to have some positive updates soon.

Georgina

Lanzarote 2022

So if you read part one you will know that our flights were cancelled so we needed new flights. New flights came with new flight times and a new plan to get to the airport. We needed to be at the airport for around 8am, luckily this meant the airport wasn't very busy and we flew through security and into the restaurant where we ordered breakfast. Charlie started to get angsty just 15 mins before we were due to board so he did exceptionally well. The flight was unproblematic until the last hour. My eldest had told Charlie that it was a 3hr flight, so once 3hrs was up and we didn't land, Charlie really struggled. He couldn't really understand why and would not listen to reason. It was difficult. When we landed tho, jet2 was fantastic! Absolutely incredible and I will be hoping to look to them for our next holiday as I felt really supported by them. An earlier flight means an earlier land and we managed to make our evening meal. Coincidently that was the only evening meal we had together.

The apartment was lovely, like a villa, very white and bright. We had our own kitchenette which saved my life. Normally on all inclusives the kitchen area is locked down but ours was up and available and we were able to use it. This was fantastic as Charlie struggled so much with eating there. We had a banana tree outside our door. A drying rack for all our swimming clothes, an outdoor eating space which was nice. My older 2 children shared a room and my Charlie was in with me. We went to explore the first night and even managed a quick dip in the pool before it got too late.

We went Sunday to Sunday. So Monday we spent the day by the pool. Charlie loved it. If he could of spent every day all day by the pool he would of done. But we wanted to see more of the island so I got to work booking some excursions. We went off the resort every day in the end and I was so grateful, because we made the best use of our time there.

Tuesday we went to the beach, wasn’t the best experience. The salt water rubbed into his sores, Charlie developed blisters from the flip flops. The sand irritated him and he had massive sensory overwhelm. My daughter said she would go back to the complex with him, but he struggled to walk with her. And was scared of the road and the traffic. So we had a very challenging time. All was well though when we were back in the pool at the hotel!!

Wednesday we took the ferry over to Fuertuventura. The ferry was fine, Charlie really enjoyed it and had fun experiencing it. We saw lots of fish in the harbour. But then his flip flops started hurting again and Charlie became very dysregulated. It resulted in some very scary behaviour and I struggled to maintain control. What's worse was we were on there for the whole day the ferry back wasn’t until 5.45pm. It was an extremely long day. It was pacified by lots of ice cream, that Charlie said was the best ice cream in the world. Which I guess to him it was! The ferry trip home was magical. We watched the sunset over the horizon and honestly it really was special. A memory we will all treasure.

On Thursday me and Charlie went on a submarine safari trip. This included going to another town in Lanzarote than where we were staying (Playa Blanca) we went to what's known as the millionaire's harbour. Looking at the yachts were spectacular. And Charlie loves boats as much as I do. The submarine trip was incredible. We dived 30 meters down, saw two shipwrecks, and literally hundreds of fish!! We had the best time and an experience I coukdn’t ever forget. We got a lovely photo me and Charlie. And a certificate to prove we were there. Memories we will keep forever. Charlie's siblings stayed on the complex for the day and I think we all benefitted from some space apart from each other.

Friday we had a private tour of the island with someone that was reccomended and had been living on the island 14 years. He took us to see some incredible sights, spoke to us about the culture and history. We were out for 5 hours but after 3 hours Charlie really started struggling. He did exceptionally well. My older two really wanted to see the green lagoon but Charlie had had enough, put he put those feelings aside and we managed to see the green lagoon after all. All in all it was a great day out.

On Saturday we went to the local waterpark. I think charlie spent 5 hrs just on the lazy river! He absolutely loved it. By far the best part of the waterpark for him. My eldest stayed on the complex he didn’t want to join us. And because Charlie was so happy in the lazy river myself and my daughter went on the slides. Which was awesome obviously. Charlie's not one for slides but he didn’t mind. Because it was our final night, we went out for a meal on the beach front. It was a lovely. Everyone had a good time, it was a lovely meal, beautiful setting and the perfect experience to end the holiday.

Sunday we flew home. And the flight was so much better. Charlie was more relaxed and managed it better than the flight there. So that was perfect. We were on an earlier flight home so we were home and settled by 9pm which was a bonus because everyone was back to reality tomorrow. The older kids back to college and Charlie back to tutor, I was back to work.

So I learnt a lot from this holiday. Seperate bedrooms, self catering is the way forward. Charlie's attention span is 3hrs for an activity. 4 hrs is the maximum on a plane. It will be 2024 when we next go abroad as we have a holiday booked to Disneyland in Paris. But until then we'll stick to UK breaks.

Hope you enjoyed the holiday blog.

Georgina x