Lanzarote 2022 pt 1.

If you follow our social media pages you will know we took a family holiday to Lanzarote early November. Charlie was fortunate enough to go to the canary Islands with his dad and his family back in 2017. Charlie went to Tenerife with them and I wasn’t there, so I am not aware of how Charlie reacted on that holiday. So this was exciting for me.

Charlie last went abroad in 2017, that was the last time we went on a plane together or a family holiday, me, Charlie and his siblings. If i’m honest it was a bit of a nightmare! We knew Charlie was neurodiverse at that point but we didn't know how to support him or the challenges he faced being neurodiverse. So holidays were tricky as I had absolutely no awareness of the importance of routine and stability. And up until I had Charlie I was a very carefree and spontaneous traveller and mother (that is no more).

Anyway, so after a break of going abroad which was helped by the fact we got dogs and the dreaded coronavirus, we decided on Lanzarote for our 2022 family holiday.

We went through some challenges getting there. First of all, we postponed the holiday for 6 months due to a family wedding and not having the funds. So we were due to fly out and a week before i’m told ryanair cancelled our flights!! What a drama. Another £800 on flights and a lot of stress later and we were sorted! Lessons well and truly learnt there.

Lanzarote was a big deal. So to make it work for Charlie we needed a lot of prep. We needed to make sure Charlie was fully prepared, and that was super important for me. So we drove to the airport, and watched the plane. We did some flight simulation work on YouTube, we downloaded flight scanner on my phone and watched a lot of planes come over our house, anywhere really! If we saw one we just logged in on the app and checked out where it was headed. We went for a buffet style breakfast and dinner. This was to prepare Charlie for the all inclusive meals we were going to have.

We watched YouTube videos of the resort, and I showed him pictures on my phone, so he knew what it looked like and the size of it. I showed him pictures of the apartments and he chose himself where he was going to sleep. I involved him in choosing his luggage bag. It had been so long since we went, he needed a luggage bag. He chose his clothes, and swimming shorts. He was fully involved in packing his suitcase. We looked at ways we could travel to the airport and chose which way we were going to go. I did my best to prepare him and involve him so that the process would be as simple as possible. We also had a countdown on my phone. Charlie was very excited.

All the preparation in the world can't change the future though or indeed stop sensory overload and overwhelm. And Charlie wouldn't be Charlie if that wasn't part of his life. So we did the best we could and couldn't of done any more to prepare him for the holiday. This blog is quite a read so part 2 will be on the actual holiday.

Georgina x

The Calendar Project.

Back in 2020 I developed an idea for a community project to build a SEN inspired calendar. It was a way of trading a product in order to sell and give back to the charities that have supported us locally over the years. And a calendar was a great example.

You can read the 2020 blogs here:

Projects! — Advocating For Charlie

The Community Calendar fundraising is live. — Advocating For Charlie

The calendar was short lived. — Advocating For Charlie

As you can see, the effort was there and I was really passionate about it but I just couldn’t get it off the ground. There was many factors involved in this., as the blogs explained.

And then life happened, 2021 went in a blur and I never gave it a 2nd thought if I am honest. Fast forward to August 2022 and I am told we are in the community grant project from our local Tesco! How exciting! I applied for their grant in 2020, and I had honestly forgotten all about it. Then one day my sister emails me, forwarding an email she has also received. And Tesco had put our project forward in the grant. So, those little blue coins that you can get from the tills in Tesco, put them in Advocating for Charlie. If we win, we will receive £1500 which is a huge sum of money and will go towards the printing costs of the calendar. That means that 100% of the profits of the calendar will go back into the charities which is a massive achievement. So, if you can, and if you are local to Derby please vote!! The voting ends in January.

Here is a list of Tesco stores taking part.

2068 Derby Sinfin Express DE24 9HQ Express
2381 Derby Hilton Express DE65 5JR Express
2404 Derby Mickleover DE3 9NH Superstore
5445 Allestree Derby Exp DE22 2GP Express
6060 Derby Stenson Rd Exp DE23 1HG Express

I would really appreciate it if you could get all family and friends to vote for us too! Every time I go in and see someone voting for us I have to hold it together, but deep down I want to scream “it’s us, we’re Advocating for Charlie” vote for us!” I hold it together don’t worry. Otherwise, I would probably get myself kicked out of Tesco and that wouldn’t look too good.

As the project develops, I will share more with you all.

Georgina

Covid has hit the house.

I was called back home on Tuesday, instead of travelling to Belfast for a well earnt break. Working full time and caring for Charlie is definitely taking it’s toll on my mental health and I wanted to have a break to reset and come back in a better head space. Unfortunately, it was not to be. When I got that phone call I can honestly say I grieved for the holiday and the break I thought I was going to have. It had been pretty full on already. So maybe I was being to adventurous and should have stayed in my lane! I had been down south to a conference with work. It was our annual conference on Saturday and because of the distance it meant travelling almost 80 miles south for on the Friday.

The conference and meeting my team was a fantastic experience. I work remotely so there isn’t much face to face meeting of any sort and we are spread out a bit, with some of us down south, Essex, Sussex and then obviously Birmingham way. So it was great to have that catch up and meet other members of my team. The conference as well was truly inspiring. I met lots of Wolfram Syndrome affected adults and learnt about their condition and how it affects them. It was incredible to meet so many people. Sunday evening I travelled down to Birmingham ready for specialist clinics that I support for Wolfram Syndrome. The plan was that I was in clinic Sunday, Monday and Tuesday. And then from Tuesday evening to Friday I was going to Belfast. But I never made it.

I had a call on Tuesday to say Charlie was not coping, he was very high maintenance and his Dad was not managing either. In short, I needed to come home. I abandoned my trip and headed straight there. I was devastated. I really needed this trip to mentally reset and look into why I have the feelings I do and what I can do to change them. It was really key to my mental health to have this mini break but it wasn’t going to happen. To say I was upset was an understatement. That, and the fact I have lost around £800 in flights and hotels. Double whammy.

I got home, and naturally, Charlie perked up. And I did wonder what I had gone home for? But getting him something to eat was difficult. And when he told me everything tasted “disgusting” I knew my priority was getting him a covid test. Then it was clear, why he was struggling so much and felt so terrible. Unfortunately, Charlie’s Autism meant he hadn’t been able to communicate with me that he thought he had covid or how he had been feeling to his Dad. And his Dad was struggling not understanding why he was being the way he was. No doubt, if I had been home I would of picked up on this. But, I wasn’t home, so the mum guilt hit me hard. I should be with him, not booking myself trips away. Who do I think I am? My reset is going to have to look a little bit different now. I still need it. It is essential not only to my mental health, but so I can carry on caring for Charlie and be the mum he needs me to be.

Covid is hitting my family now, we are all a little under the weather, all trying to do as little as possible and trying to stop any spread of it. Not sharing areas, and Charlie has mainly been in my bedroom with the tv on. And I am running around making sure he has everything he needs. Food still doesn’t feel or taste right to him. He is still quite lethargic, and not really communicating and honestly, the fear of getting covid in this household has plagued me. We managed to avoid it for 2.5 years but now it’s hit. By all of us not sharing areas and being considerate about the fact that one of us has covid and we want to avoid anyone else getting it, so far it is working!! It definitely was the right thing to do, to come home. Maybe I will regret it. Maybe I will find it difficult now for a long long time. We have such a busy few months coming up, and the fear that I won’t get any real time for myself is quite difficult to process.

I am however, looking forward to a much more relaxed weekend.

Georgina x

All the change.

As promised, this is the blog i’ve been meaning to write about changes. We’ve had a lot of changes, and it’s been upsetting.

Firstly, we’ve had some changes in our family dynamics, and it's been a big change. One that I didn't make likely, one that is still impacting our family now and likely, unfortunately, to impact our family for some time still. It's heartbreaking knowing that my actions have affected the tiny humans in this household. Hopefully we'll get thru the next chapter and onto the next one!!

The next change comes in the form of education. We’ve been doing our own version of home education for 15 months. We've not followed the National Curriculum, unfortunately we've not followed Charlie's EHCP but we have strived to be better than the day before. That's been my educational drive, just do better. Doesn’t matter how small it is, whatever Charlie learns and retains is a bonus. Charlie now has a home tutor and he will have to learn how to navigate education and his EHCP with someone new. More change. Luckily Charlie has hit if off with his tutor so this change should be manageable. However, it's still change and 15 months is a long time. Having to transfer care from myself to another adult is difficult. Both for me and for Charlie.

And then there's the bedrooms. This summer we all had a change of bedroom. It was needed, my daughter had outgrown her “box room” bedroom. My son had already outgrown his seperated side to the boys bedroom. Last year I transformed the dining room into a bedroom for my eldest son. My daughter moved into my room, Charlie moved into my daughter's bedroom and I knocked down the wall that was seperating the boys bedroom. I am now in the boys bedroom, and will convert part of it into a home office for my new work from home role. So altho these changes are good, positive and support the household as a whole. Charlie’s had to get used fo a new room, surroundings, bed, mattress, lighting. Everything. Everything has changed for him by changing his room and it hasn't really been smooth sailing. We've struggled to navigate this and unfortunately, Charlie is still very much so spending many nights in my room rather than his!

Finally, our last change has been the Guinea pig, I made the decision to put Gerry the Guinea pig in Charlie's room. What a game changer. Charlie loves his Gerry and has him out the cage most evenings. Everyone's a winner!!

Tutor Tom is back tomorrow after a 13 day absence while he was away on holiday. And I can’t wait to see what he has planned for Charlie for Year 6!

Georgina x

Tutor Tom is in the house.

Annoyingly, I wrote this out. Left it on my personal laptop. Got busy, closed said laptop and lost it! Very annoying.

Well, it’s been a hot minute. Life has been busy, just after I broke my phone, was without it for a week! I crashed the car. It was terrible, 2 out of 3 children were in the car and it was completely written off. I couldn't of driven it even if I tried. This was August Bank Holiday weekend and we’ve been without a car since. Its hard work, i’m not going to lie. Charlie isn't a fan of leaving the house anyway so without a car everything is so much more difficult and so much harder.

We've had a funny week this week. Monday was a Bank Holiday again, 2 Sundays are hard work. Sundays always feel so dull. Slow and very empty. And times in the house are already pretty slow and calm but Sundays always feel that little bit worse.

Tuesday was my daughter's birthday, she was 17. Now going to college full time with her older brother who will soon be 20. They both have a schedule that means Wednesday afternoons they are off together so we’ve come up with a plan to have family day on a Wednesday afternoon. It’s difficult now to get us all together when 3 out of 4 of us work and then the big ones have college and then they also want to do social activities with their friends. My son also has a girlfriend he wants to spend time with.

Last week we went bowling, this week we went to Ed’s Easy Diner which was my daughter's choice as it was her birthday. Its going to be nice to prioritise family time in the week.

Our week has been relatively quiet and not just for the Queen's funeral (God rest her soul) but also because of Tutor Tom going on holiday. He only did 3 shifts with us and then he has gone on holiday! I am hopeful that the work he has done with Charlie means that he will be able to slide back in when he is back.

It’s surreal, but I have met Tom before. He was a headteacher to a SEN school over in Staffordshire that I went to when viewing schools for Charlie back in 2019. The school was good, they had a really good idea of what the children needed and how to manage their challenges. However, they were opening another school in Leicestershire and that's the school they wanted Charlie to attend. That would be too far! Charlie wouldn’t be able to manage that, and could you imagine travelling there and back all for the sake of an hour? It would take me longer to get there than the sessions.

So, when Charlie's tutor Tom knocked on the door, I felt like I remembered his face but I couldn't quite place it. When he told me his history - I knew. It instantly put me at ease and I knew that he understood the behaviours that Charlie presents and how to engage him in a level of learning. I am super confident that he will ultimately get Charlie where he needs to be.

Bring on Tutor Tom and the future.

Georgina x

No phone drama

Unfortunately I have no phone. I left it on a kitchen side and unfortunately for me a 2 yo was around. It’s a shame, as now I have very limited access to social media and can’t update or report on anything. This is the 2nd time my phone has been fixed in less than a year and it is 5 years old but quite literally holds my whole life in that tiny bit of technology. Life at home is going well, I have now finished my mentoring job which means I no longer have to work in the community weekly. This is good news for Charlie as he needs me at home. Especially as we are transitioning onto the EOTAS plan and Charlie will extensive support to transition into this. He needs to have me around to support his time with the tutors and therapists and I cant do that if I am out of the house. So this is a good move for us.

Charlie also costs me a lot of money. More than any other ten year old I know. He has specific interests and he needs a lot of scaffolding to support him in life, so I naturally need a lot more money into this household. My new job will come with new hours and a new wage and should make us a lot more comfortable for the next few years. It does not help that my other children are in a transition phase too. So my eldest is going into the final year of A level studies, and in 6 months time he will be completing his UCAS form for University. My daughter is entering her first year of A levels in September and she is awaiting GCSE results (4 more sleeps not that we are counting) and she is also starting her very first job. So as you can imagine, life at home is often fraught. We have lots of changes and lots of transitions and it does get increasingly difficult to manage. Especially when you are on your own and have no emotional support.

The room changes are going well. I am about to start painting Charlie’s new room and I have high hopes that he will be in this new room from tomorrow evening. This is what I am hopeful for. Again, it will take some time to adjust and transition into the new room and thankfully I will be working from home and have limited meetings so I hope that I will be able to settle Charlie in with minimal effect on my own personal sleep pattern. But as we all know, Charlie’s sleep is really hard to manage at times.

My phone should be fully repaired and back by Tuesday, but I am considering taking a bit of a social media break and just updating the blogs instead. It can be quite time consuming to keep up with the social media aspect of things and throwing all of our other challenges into the mix just makes me feel as though other parts of our lives need more attention and I can give them the attention they need without feeling the need to have a constant online presence. I hope this makes sense. I really will be quite grateful when our own personal version of changing rooms has been completed and everyone in my household has fully transitioned to their new timetables in September.

Take care all. Is it 2 weeks to go?

Georgina x

All change.

Where do I begin? We have had so many changes in this household lately, and still more to come! Lots more. I suppose the most important change for Charlie is the changes of bedroom. Right now his sister is going into my room, he is going into his sister's room and I am going into his room! It will cause quite a disturbance as Charlie like familiarity and loves routine so changing rooms will ultimately upset him and this could become problematic, especially for him settling him at night.

Changing rooms will be a long gradual transition to ensure Charlie has the time and space to move into his new room and settle there. We're under no pressure to rush this process so we can take as long as Charlie needs. Charlie also has picked out his own paint and wallpaper. He will also choose his own bedding and curtains/blind too. Having Charlie choose his own designs and themes in his room is a step forward to giving him control which reduces his anxieties. This can only be a good thing! I look forward to the day when he is settled in his new room.

The next big change is of my job. This week saw me starting a new work from home role with a national charity as a family support coordinator. I am very excited about this role. I believe I've gained enough skills from liaising with professionals as a parent carer and in my previous roles to be able to effectively manage this role. It’s a dream for me, working with families who have challenges due to medical issues and supporting young people to get the best out of life. Making sure that they have access to everything they should need. Working from home is definitely the best role for me as it allows me to be present for Charlie and his siblings and I can therefore put their needs first. Although, yesterday was full of challenges. We really struggled with the new way of working and working from home with 3 children to take care of definitely had its teething problems.

This week saw the return of drumming lessons. This is an activity that Charlie used to really enjoy and I specifically asked for it in his EOTAS plan. However, when he got there, we were in a different room. And it was smaller and made him feel claustrophobic. Unfortunately because of this, we left after less than 5 minutes. I have not yet organised this as life has taken over, but I need to request our old room back. That change is just too much for Charlie and the drumming didn't go down too well either. Unfortunately we haven’t attended drum school since pre covid and i’m not sure drumming is still the activity that supports Charlie the best that can be with musically. So we will have to see what else we can do there.

There has also been changes in my personal life and i’m not quite ready to discuss that in this little space of mine. But the change will absolutely affect Charlie. And that's unfortunate as I did my very best to protect him and unfortunately, I am likely to hurt his feelings with my decisions.

I think that's enough changes for now, September will bring even more changes when EOTAS finally kicks in and Charlie will have to coordinate speech and language therapy (starting 8th) swimming lessons (starting 6th) and an occupational therapy assessment on the 7th. We also have tutoring that will take place 3 mornings a week. I am still happy that eotas is going ahead and we should be able to settle into a managable timetable. I will update in September!

We're halfway there.

Georgina x

Personal Budget is in!

I actually can’t believe what I am writing! It does not seem real. Last Friday we were given 2 lots of good news. The first was our award from short breaks was reawarded. This is fantastic news and I genuinely feel its the first time is so long that we have not had to fight and plead our case to get this support. What a relief.

Short breaks is a provision that can be accessed in many different ways to provide support for your disabled child. It may be in the form of a payment so you can fund a personal assistant to support. It could be a recognised centre for 1:1 and group support. It can be towards equipment and services which will support. Every local authority is different and so I won’t know what is available in your areas. You can read up on short breaks below.

https://www.gov.uk/government/publications/short-breaks-for-carers-of-disabled-children

https://contact.org.uk/help-for-families/information-advice-services/social-care/short-breaks/

https://www.barnardos.org.uk/what-we-do/protecting-children/short-break-care

This is a welcome positive support for us. And will be used for Charlie to access community activities without me. It is a grant within our local authority and I do not need to provide receipts altho they can be asked for at any time. It does not need to be paid back.

Our second bit of good news was the personal budget attached to Charlie's EHCP has finally been paid after waiting months. Hooray! And although the package of education will not be anywhere near the price of what Charlie will have when he was in his independent specialist school. It is still a massive step forward for us. It means that there is a pot of money to support Charlie to learn at home. I have already bought a laptop, membership to English Heritage, National Trust membership, drumming lessons and swimming lessons. Wow! All this already and we still have more left to organise.

We also have speech and language therapy starting in September, an assessment for occupational therapy soon, and a tutor starting in September also. Unfortunately what this means is that there will be lots of changes in September and we will go through a very difficult transition and it will be difficult and I will get challenging behaviour while he settles into this new routine and change.

But its good!! We're prepared and we're ready for the challenge and i’ve learnt some amazing coping strategies and of course some calming strategies for Charlie so he can regulate his emotions and we can get through this difficult transition period.

Here are some links on personal budgets.

https://www.senexpertsolicitors.co.uk/site/news/What-do-I-need-to-know-personal-budgets-direct-payments

https://www.ipsea.org.uk/personal-budgets-and-direct-payments

https://www.ndcs.org.uk/information-and-support/education-and-learning/getting-additional-support/getting-additional-support-england/education-health-and-care-ehc-plans-and-personal-budgets/

https://www.gov.uk/children-with-special-educational-needs/extra-SEN-help

I will update you as we go. Let’s do this.

Georgina

School's out for summer

Summer is absolutely here. These days are really hard, the extreme temperatures does absolutely nothing for Charlie’s sensory needs. Thank god for the pool!! We have been in the pool almost every day, maintaining the pool is definitely more complicated than I first anticipated. But is so worth it, because the sensory feedback Charlie gets just makes these days more bearable. We really need the pool on days as warm as this. It is getting Charlie used to temperatures that we may see in Lanzarote.

Part of preparation for the summer I have done our summer schedule. You may of in the past seen the whiteboard we use at home to communicate with Charlie what we are doing for the week. This is similar, we have the weeks planned out and it’s all colour coordinated so that we know what everybody’s doing. It’s set out so we have some semblance of routine. Set days when I am working, when we have day trips and when he goes to his dads. Because of my work shift pattern, I need some sort of routine for Charlie to ensure that the holidays does not descend into chaos.

As far as education and Charlie’s EHCP has gone, we are close now to the final plan. We have been agreed 8 hours of tutoring, OT support, SaLT support, we will be meeting with Charlie’s new SaLT in the coming weeks. And a mentoring programme of 3 hours per week for social activities. Along with a personal budget for things like day trips to discover local culture, and trampolining. It still feels forever away and I imagine it will still need lots of amendments because that’s what happens in our life!! Charlie has unfortunately never had a straightforward EHCP review, draft or final plan. It’s been exhausting trying to fight for this. Charlie deserves the bare minimum at the very least and the absolute best at the very most and we don’t even scrape to the bare minimum, it is soul destroying.

We stay positive though. We have a few plans throughout the summer and I am happy to have the pool as it is the only thing that is making like bearable in this heat. The heat is so intense in the day, that it literally paralyses Charlie. He is unable to communicate, or take part in any activity. He is sensory seeking all day long. The evenings are better as Charlie is able to manage his emotions better and take part in just every day activities, such as coming out in the car. The heat makes it impossible for him to take part in every day life. And then the nights are awful again. Stale air, that’s too warm. The fans cause a noise that upsets Charlie and he can’t block it out. Charlie also struggles with the windows open and the noises outside. The noise from outside is heightened due to the presence of people out in their gardens or out on the street having late night walks. This time of year is honestly the worst for us. And I, for one, can’t wait for it to pass. Roll on September - Year 6. Home education in full swing!

Take care in this heat and stay hydrated.

Georgina x

The end of placement 5.

Last Friday, I had to go and pick up Charlie’s belongings from his last placement. I was devastated, I really wanted this placement to work. That’s why I went to tribunal, so we could get the very best in education that life and our LA could offer. And is, it really is the very best for our local area. But, the school trauma runs deep. His challenges with education is far more complex than I could ever have imagined, and no one could of anticipated that this placement would not work.

But onto the next! As sad as it was to leave the independent specialist school behind, we are onto a new placement, a new challenge and a new way of educating Charlie and of course advocating. We are in new territory here, I thought SEN schools were new territory, this is like nothing I have ever faced before and I will be making sure I skill myself up as much as possible in order to support Charlie the best I can.

We are very close to finalising Charlie’s EHCP to include EOTAS, and I told Charlie yesterday that he was going to have a private tutor and he was so happy. He is over the moon to know that he will spend his days with me and have a tutor to support him with the more important topics. I just wish that they would hurry up. I can opened a new bank account with a separate bank, in order to receive the direct payment that we will need to finance Charlie’s new plan. There is so much to learn about this, I will have to keep the money separate (hence a separate account) I will have to keep receipts and invoices, a track of the money we spend and evidence how it all supports Charlie’s way of learning and development. It is a new way of education, a new way of learning, a new way of advocating.

Let’s hope placement 6 works!

Georgina x

The panel has formally agreed EOTAS

I honestly can not believe what I am writing. After agreeing in principle last October that we could make the move over to EOTAS after the last placement had broken down. But October was 8 months go and we still don’t have a provision in place. The news today is very welcomed I am tired of living in limbo under all this. Charlie is unaware, one of the most important piece of raising Charlie is to make sure he has no unnecessary anxiety. To make sure his life flows, with as little interruptions as possible and to make sure we stick to his routines as much as possible.

To do this, I have limited the conversations I have with Charlie over school, education and learning. He knows he will not be returning to his old placement and he knows we’re working towards him being at home with me for home education and that is where I leave it. Eventually, we will have more conversations and I will slowly introduce him to all the parts of the EOTAS plan that we have have been agreed. I feel we’re still so far away from it all. Charlie has basically missed all of year 5 in his education and he is still so academically behind in his Maths and English. Luckily, cognitively Charlie has no difficulties. He understands and responds (albeit in his own way). We still have so much work to do around sensitivities, strategies and speech and language but ALL that is outlined in the EHCP and we will have provision to support this.

I feel so relieved that I can see that light at the end of a very long tunnel. I am so pleased that we will be working on a plan that fully supports Charlie’s educational, social and emotional mental health needs. I am happy that Charlie finally has a placement that suits his needs and respects the challenges and barriers that Charlie has to learning.

I will keep you all updated on the progress, and it would be amazing to believe that this will be sorted before year 6 starts but I won’t hold my breath! Once Charlie builds in these new routines, of seeing the maths tutor, horse riding, swimming lessons then I will (fingers crossed) ask the LA to support Charlie with a TA that can work with him 1:1. This will only be done when I can prove that Charlie is thriving and successfully managing the demands of the EOTAS. Once I can prove that, then we will be able to successfully request a TA to support Charlie and increase his learning. I am excited for the future.

I can’t wait to share the news that the package is in place and we are being fully financed for it.

Georgina x

Play Therapy.

Some time last year in 2021 we joined a waiting list to receive Play Therapy for children with a specific form of autism called PDA (Pathological Demand Avoidance). Charlie fits into this category because he has autism with a demand avoidant profile. I wasn’t sure how we were going to manage this, as Charlie isn’t very good at managing structured play or taking demands so I am unsure how he would manage this but I think we needed to give it a shot as anything is better than nothing.

The charity that gave us this opportunity was Moonbeams Play Therapy and it was through a post on Facebook that one of my Guardian Angels tagged me in. See even years later, they are coming to my rescue and supporting our family. You can find out more about moonbeams here

Moonbeams Play Therapy

The benefits of play therapy are described below

What is play therapy? (bacp.co.uk)

To find a registered play therapist for your child see the link below for the official registered association.

Play Therapy - The British Association of Play Therapists (bapt.info)

Back to moonbeams though and our personal experience. I will not go into vast details as I would not like to take away from the amazing work that they do. Sessions are 10 if face to face or 7 if online. We did the online version as that is what works best for our family. It is a mix of both theory and structure in the sessions and by session 4 we have the play kit we need to be able to facilitate play therapy ourselves. The theory sessions are informative to know all about communications, the boundaries, time spent in sessions and how to support sessions that are becoming stale. The theory is as important as the play. And they work side by side really well.

Charlie wasn’t able to participate straight away in the play sessions, and I heard weekly from other families that they were actively having their sessions and I felt really sad that Charlie was not taking part and thought he was missing out. However, now we have got there in the end. Charlie has now taken part in his first play therapy session and he’s ready to take on that commitment and we can now make this part of our weekly routine. I am super excited about where this will take us.

Georgina x

May Half term 2022

The pool is up! I have been waiting for this for a very long time. Charlie is obsessed with water. He absolutely loves it! He would play with water every day if he could.

Last year I joined a Facebook group dedicated to above ground pools. I have spent the last 12 months researching how to maintain and build the perfect pool for us. Then I started saving and buying little bits a a time. The best advice that I got was to have foam mats under the pool to stop the bottom of the pool getting damaged (we’ve had pools before and they’ve ended up ripped at the bottom because of the grass underneath. And to get something that would naturally keep the pool warm so that I didn’t need the expense of running a heater.

That's why we got the Polytunnel. This acts as a greenhouse to keep the pool water warm. And so far it’s been a success. In the past i’ve struggled to maintain pool water and ended up draining pools a few days later and then throwing them away. It's very frustrating!! So here’s to the future of above ground pools.

Other than sorting a pool, our half term has been relatively quiet. We tend to stay home. It can get very busy being out and about, and with Charlie being home educated we have plenty of trips that we can do term time! Silver linings of course. We have been very lucky that Charlie's dad has also seen him 3 times this holiday which has been positive for Charlie as we're constantly building that bond so that eventually Charlie will be in a position to go to his dad's house for sleepovers!

I feel like i’ve had more than enough downtime during this week to be able to put some energy into our upcoming meetings with the LA around getting Charlie's provisions in place. It is coming together slowly. But it is very slowly! And I can’t help but think if they hadn't of ignored me for the best part of 2 months while I continually emailed them then we may of been a bit further along than what we are now.

Wish you all a very happy jubilee weekend whatever you’re doing.

Love Georgina x

Personal Budget request is in!

I honestly can not put into words how frustrating the last 7 months have been. But we have finally been given some headway. I honestly can’t believe it’s true. I requested EOTAS (Education other than at school) back in October 2021. Charlie had not attended his independent specialist school since June 2021 and despite a great effort from all the staff that work with Charlie, unfortunately he is not able to access education or learning in a school setting. We’ve tried 5 settings and frankly, that is enough. I can’t keep putting him through this. So, armed with my decision I told our caseworker that I wanted to apply for EOTAS. It started well, we had some positive communication and it seemed promising. But it wasn’t to be. It was months before we heard from the LA and that was only because I issued a formal complaint.

It is highly unreasonable to expect us, as parents and carers to communicate with the LA through a complaints procedure. But that is exactly what has happened. It took 4 unanswered emails and one official complaint for a response. I got an apology, but that is not good enough. It has been almost 12 months now that Charlie has had zero input from education and none of the provision in his EHCP has been provided. It is absolutely shocking, and what is worse is there is a team of people that think this is acceptable.

The result of the formal complaint has meant we have been sent a personal budget request form. I have filled it out the best I can and with everything I feel Charlie will benefit from that will deliver the provision as outlined in the EHCP. Again, I must stress, this is not my job! There are members of staff earning £30k a year to design these plans and keep them updated. And the managers on significantly more.

So, how does a personal budget work? The link below gives you more information.

Personal Budgets in the EHCP | Education Advocacy

Personal budgets and direct payments | (IPSEA) Independent Provider of Special Education Advice

EOTAS: Education Otherwise Than At School. What is it, and can I get it? - Special Needs Jungle

The formal complaint was only made possible from some amazing knowledge passed to me via IPSEA. They are an independent charity that offer a free helpline service on a Friday. I simply booked a slot and used that free one hour advice line to get some information on what I needed to move this along. We had been waiting too long for the LA to act and enough is enough. The link to the advice line is below:

Advice Line | (IPSEA) Independent Provider of Special Education Advice

IPSEA do incredible work and do incredible training also. I have been on their EHCP masterclass and I feel as though it has armed me with the knowledge I need to keep battling on to get Charlie the right level of education. It’s exhausting, of course it is. But I think it would be so much worse if I didn’t put so many valuable hours of my life into this. And those hours are free, I don’t get paid to do this for Charlie. I do it out of love for him and wanting him to have his best life.

We are currently 6 days into the personal budget request and the LA have 10 days to notify me of a decision. You bet I will be there Monday morning requesting information and making sure they are abiding by the law. I can’t begin to tell you how many educational laws they have broken by not responding to my emails and letting the EHCP lapse the way that they did.

I will keep you all posted. Fingers crossed for some better news on Monday.

Georgina x

Easter 2022

This Easter has been very different. It’s been the first Easter Holidays that my older children were on different term times. This meant my eldest son broke up from school before my middle daughter, which has meant by the the time my daughter goes back to school we will of been “off” and “on holiday” for 25 days!! It is an awful long time to feel out of routine and be in limbo. Easter weekend is even worse as the mix of too much chocolate (how do you stop your child from eating Easter Eggs) and late nights, lazy mornings and nothing to do is absolute hell in this household. To make matters worse my car is broken and will cost around £500 to fix!! So we have no car, and what is normally a pleasure to stay at home and “chill” now all of a sudden feels like being trapped.

We’ve had some wins though. If you follow our socials Advocating for Charlie (Gina) (@advocatingforcharlie) • Instagram photos and videos Instagram mainly, you will know that we have learnt to ride a bike (yay) and we were very kindly given a pressure washer, of which Charlie massively enjoyed blasting the patio. Charlie LOVES water. And spends an awful lot of time enjoying the sensory feedback. The garden is looking fabulous with his help and keeping him engaged has been really lovely. I will take that as a win. Funnily enough we have now started building our own little routines into the days which include hosing down something (doesn’t really matter what with Charlie, he doesn’t care) with the hose pipe. Another purchase, to attach to our newly acquired pressure washer. Walks with the dog, onto the green, and riding the bike. Charlie also has been down to the end of the street (his boundary) on his scooter. It’s incredible to see him out and about. Not too long ago, Charlie’s anxiety meant that we rarely left the house, and simple household chores such as walking the dogs were non existent and impossible. I am so pleased with the progress he is making and continues to make.

I think part of this, don’t be too fooled, is possibly the PlayStation ban he currently has. Unfortunately, Charlie can be rather too vocal on PlayStation and then he ends up with a ban. But I do love the peace and quiet when there is no PlayStation. Technology is absolute paramount to Charlie and his educational needs. There is a study below based on the impact of technology for ASD children

The Impact of Technology on People with Autism Spectrum Disorder: A Systematic Literature Review - PMC (nih.gov)

Research done by the National Autistic Society outlines the positives and benefits for gaming when you are autistic.

Online gaming means autistic people can play in an environment we feel comfortable in and can control. (autism.org.uk)

Charlie is always happier at home. His anxieties are lower, his expectations decreased and he is more likely to engage in other activities away from gaming when he is calmer. So it’s always a win to be surrounded by an environment that supports Charlie and takes care of his needs first.

I would call this holiday a success. Back to some kind of normality tomorrow as play therapy sessions are back on and I am back to arguing Charlie’s non existent EOTAS plan with people on a £30k + pay grade! More on that as it develops.

Happy Easter Hols

Georgina x

A little refocus.

I have recently had the joy of being away for the weekend. It was my first full weekend away from home in 3 years. I have previously spent the odd night away. And a lot of the time I have taken a child of the household with me. However, this time, I was away all weekend Friday - Sunday overseas (Dublin) and this was the first time since July 2019. The time away has given me a chance to refocus and recharge and make sure I can support Charlie and his siblings to the best of my abilities.

Previous to the weekend, everything was so stagnant. Our plan for EOTAS (Education Other Than At School) had been stagnant for months, there was no clear plan or direction and I was starting to feel deflated and lost. I will admit, I had lost the fight. The ability to keep going and keep battling on to get Charlie’s education and mental health organised. For a long time now we have known that Charlie need medication to balance the chemistry in his brain in order to support him better so that he is able to do the things that everyone can. If Charlie was over 18, he could walk into any Doctor’s office and say, he is depressed and suffers from anxiety and he would receive that life changing medication. Because he is a child it has been kept from him. Those above us in positions of power, gatekeep this from us. Charlie tells me on a daily basis sometimes that he wants to die, hates life, wishes he was never born and is scared to leave the house. Why are these statements ignored? They wouldn’t be ignored in an adult. Maybe an adult would struggle to get support straight away due to the underfunded services, but they wouldn’t be ignored.

So for now, I have have picked up my phone - dashed off the emails that needed and drew the battle lines . I have begun to fight back and start trying to mend this impossible situation I see us in. I have written emails to the LA, school and the specialist community advisor. I did this on Monday, it is now Thursday and both school and community advisor have responded to say they will “chase” things up. But as of yet, no response from the LA. Our draft plan after annual review came out in October 2021, I refused it as Charlie was no longer attending and it was clearly established that he would not return because primarily he wants to be at home with me. This is the only place he feels safe, and unless he feels safe and secure he will not be able to learn. This is an issue of course. It will be April tomorrow and Charlie’s EHCP is still sat in draft, having been refused and there has been no progress in ensuring that the therapies in the plan are delivered and accessed by Charlie. Let me reiterate. It’s been 6 months since I refused to agree to the draft plan. After an annual review 11 months ago. It really is despicable that it has taken this long to get this far.

As always I will update with any progress but the lines have been drawn and we are now battling through to the next stage. Charlie will be entering Year 6 in 5 months and his academic abilities are still classed as reception. The level of things he can not do academically is stark, however, cognitively he can do it all. But in this life you have to walk the walk, not talk the talk. So that will not benefit Charlie.

Birthday in Dublin.

Last Friday I turned 39. I never thought I would spend the whole of my 30s fighting the educational system, struggling to leave the house, feeling the bitterness of depression and having to sacrifice me career, pension, income and career goals. That was not what I had planned or what I saw for my future. It unfortunately creeps into every single crevice of my life and it is painful to see it happening.

After 2 birthdays in complete full lockdown I wanted to enjoy this year, the last of my 30s so booked 2 nights away with my boyfriend to Dublin. It wasn’t without it’s issues of course. I can’t just hop on a plane and go away. Life doesn’t work like that for us. It had to be a well oiled military style operation to go away, making sure Charlie was as secure as possible and with someone who could take care of him - the only other person that can do that is Charlie’s dad. But, Charlie doesn’t stop over at his Dad’s house, so his Dad had to stay at my house. And it is for these many reasons that life just isn’t the same for us as it is for other separated parents. Other separated parents, are able to co parent and share the responsibility physically with their children. But Charlie’s needs means that Charlie is unable to leave the house and staying overnight somewhere is so traumatic for him that it is not possible. It is also one of the reasons why myself and my partner can’t or won’t be living together any time soon. My partner has his own children where he has 50/50 care of and he is a dedicated, devoted father and his children are his first priority. But aside from that, having someone else in our little family of 4 is quite unsettling for Charlie so wouldn’t happen either. We have our own routines, and little ways in this house and moving away from that disrupts Charlie so I wouldn’t do it anyway.

So, for me to enjoy a couple of days in Dublin, meant everything had to be Charlie led and make sure his thoughts and feelings were taken care of, before we made any major decisions. Having his Dad here, has been a welcome change and a new challenge to our co-parenting. To be honest, I don’t know many fathers that would sleep at their ex -wife’s home, on her sofa, to take care of their son while she goes away with her boyfriend for her birthday. And I think that is real testament to how much our co-parenting has developed and grown in order to make sure Charlie’s needs are taken care of and to ensure that all the routines and stability stays so that I could have 2 days off from the world, and Charlie could get some quality time with his dad. And it was so welcomed. It came at just the right time.

My birthday was spectacular, I had a great time, a great experience and it really did give me the chance to put things into perspective and give myself a new focus. Excited for the next battle.

Georgina (now aged 39) x

We are ready for Spring

It’s taken me a while to write this catch up. We’ve been in limbo for a long time. It’s been very difficult for me and it’s been quite emotional. I keep Charlie very shielded from all the decisions and stress of his education, he already struggles so much with the concept of education I don’t want him to have any extra concerns so I do keep the ongoing battles with the LA away from him. The only thing he is really concerned about is whether or not he has to go to school! Because actually he is SO much happier being home educated. And we are really working towards making this a reality now. As Charlie is SEN and has an EHCP all education provision has to pass through the LA and the EHCP has to reflect the provision he is in. Our provision will now be EOTAS (Education Other Than A School) and that is what will be named in section I placement details.

So, we have had several months where this has been stagnant. Where we have not moved forward with our EOTAS plan, purely as we have had to wait for the clinical psychologist from the school to observe and report. This report has now gone to the LA 6 weeks ago and it should be enough evidence to now kickstart the EOTAS plan in place. But so far I have not received any support or guidance from the LA on this. We have been awaiting an assessment from CAMHS for over a year now, it is into the 14th month. The latest on that is that we have been assigned a specialist community advisor. Her role is to gather evidence to decide what support we can receive. Part of this process is to contact school. I have attempted (and failed) to inform them that this is a pointless exercise considering Charlie has not attended school in several months. However, they are insisting that they need this first. It is definitely a pointless exercise.

Finally, we have started a course of play therapy. We are 4 weeks in and I am really hopeful that it will be an added benefit to us. This is nothing to do with social care, school or the LA it is completely separate and it is an independent charity. It blows my mind that the services that get funding and are there to support you can never find time/staff/funding to support you, yet small independent charities that have to fight hard to stay afloat are literally willing to give you their support and time for free. It really is incredible sometimes.

I will of course, try to update these blogs more and and try to keep you updated. Sometimes, having the mental energy to do this can be suffocating. When I can, I will write a blog on my mental health lately, as it has taken a bit of a battering and it is hard to focus on what needs to be done when I feel as though I am drowning.

Take care all

Georgina x

Happy New Year.

Happy New Year everyone. I wish I could feel excited about it but I just don’t. I had hoped that 2021 would bring the education and school setting for Charlie that I desperately wanted and worked for but alas, it wasn’t to be. 15 months in and it is looking like the placement will end. This is due to Charlie’s inability to access the setting and the setting’s inability to provide homeschooling which is what Charlie needs. I really don’t know where we go from here. We are waiting for the results of the clinical psychology sessions that we had in December with school.

Other updates are not so positives. We have had a second referral to CAMHS and I am waiting for the decision on this, we also don’t have access to short breaks even though I have received the budget to it, we can’t access it as there is no one available. Sleeping is still difficult. Learning is still difficult. Sensory issues are still difficult. But I need to throw some positives in there. Charlie has connected well with the dogs and the Guinea Pig, especially our Guinea Pig. The bond those two are getting is great. Charlie also has a new bedroom, he is now in his older brother’s old room as he has moved rooms too. There will be other changes as next year Charlie will be moving into his sister’s room!! But again the change should be positive. Dressing has got easier and bathing has got easier and more frequent, so they are definitely ones for the win. You really have to celebrate the small wins here.

School is still a no go. I don’t think the clinical psychology sessions had any real impact and I think the clinical psychologist will have the same opinion as me that any school setting is incredibly triggering for Charlie. And because of the trauma, Charlie has too many negative attachments to a school setting and he must heal from these before he can build on moving forward.

I really don’t know what the future holds right now. But I am researching private child psychiatrists as I don’t believe we will have any luck from CAMHS and even if the referral is successful I fear we will be on a waiting list to be seen which is almost 2 years long. The alternative is private of course, but that comes with a price tag which is undeniably unfair as I have given up my income and career in order to care for Charlie on a full time basis and to home educate him as he has been let down so drastically by those that are meant to support him.

Stay safe all

Georgina x

Child psychology (finally).

You may remember some time ago I told you all I had decided to keep Charlie at home and attempt to get him an EOTAS plan. For those of you who are new to following us, Charlie has had a very eventful journey to get where we are today.

Not only did we have to wait 12months for an initial appointment for a community paediatrician, but then an extra 2.5 years fir an official diagnosis.

School has so far been the biggest challenge, Charlie has attended 3 mainstream settings and has been permanently excluded from two. He has been to a pupil referral unit (PRU) given a place in an LA special school 30 something miles away, which I refused to send him to. And an independent specialist school that he has struggled to attend due to his high anxiety levels.

And anxiety is where we are at now. The extremes that is Charlie's reality is I can’t be more than 2 meters away from him. He is constantly by my side. The seperation anxiety is so high, coupled with anxiety and it is impossible to progress with Charlie at all. I would like him reviewed for medication.

So, I did a self referral for camhs (children and adolescent mental health services) so Charlie can receive clinical psychology support. It was refused!!! I went to the GP and they can not prescribe for medication in children under 18. The clinical psychologist from school also can’t prescribe, and neither can the community paediatrician. Only camhs. And they have refused us.

I have spent weeks researching private child psychiatrists and the prices they charge are ridiculous. Into the hundreds and we can't afford that?! Who can? Our health insurance doesn’t cover it. We have private health insurance which was a good move, but mental health or anything related to Charlie's autism is not covered (he is free in my policy). So we are back at square one. And I don't mind paying privately, i’m fortunate we're in a position where I can. But, there is no private psychiatrists available either.

I rang back the GP on Thursday last week and had a bit of a kick off to them. I feel like no one is doing anything and we can’t get anywhere and its just not fair. On any of us. Living on eggshells and trapped in the house, our quality of life is impacted by Charlie's anxiety. So the GP is going to review the countless referrals I've made for help and make a referral based on what she thinks Charlie needs. I feel as though it's a step forward.

In the meantime, school has agreed to a clinical psychology treatment plan where the clinical psychologist at school will see Charlie for around 4 weeks, twice a week for assessment and treatment. Once this has finished it will be reviewed and a report with recommendations will be written. I am looking forward to this!! The clinical psychologist working with Charlie believes he will not progress or access education until he is under medication and she fully supports that.

We will have to await the outcome!

Georgina x