Birth story

With it being Charlie's birthday, I thought I would share the story of exactly how Charlie ended up being born on his brother's birthday as it always raises a few eyebrows that they have the same birthday.

Firstly, his brother was born 10 days late after a gruelling intensive labour of over 27 hours. I went into labour on Halloween which was the day I should of been induced, however as I was doing it naturally myself, the midwifes decided to let nature take its course hence the long drawn out Labour. I said all the way through how much I didn't want a baby on Halloween and how much it upset me if I would of given birth on Halloween. I got my wish, and my eldest son was born on the 1st November.

Fast forward 9 years, and a very heavily pregnant me is having the same discussions in the hospital, on Halloween with the midwifes. After 2 emergency ceasaeran sections, I was told under no circumstances could I deliver a baby naturally and I must give birth through a planned c section. At our consultation, the consultant paediatrician suggested that we have Charlie at 39 weeks, which was the current guidelines. He was due on the 7th November so that naturally put us at the 1st of November for delivery. I started crying my eyes out in the consultation (36 weeks pregnant, still working and very hormonal) we explained we had a child born on that day and I couldn't possibly take his birthday away from him. The consultant gave in and offered the 2nd November instead. It would of been a bit of a push, Halloween then eldest’s birthday, then youngest’s birthday.. But guidelines are guidelines and thst’s what we were given.

I worked right up to 37 and a half weeks pregnant, luckily I was working for Royal Derby Hospital, so in the right place should I go into labour anyway, so wasn't so bad and I LOVED my job, every second of it. After, going on maternity leave for a couple of weeks it was on the run up. Halloween fell on the Monday, eldest birthday Tuesday, section booked in on Wednesday. Not to mention the previous week was October half term and I was off with the older children who were 8 and 6 at the time.

Halloween. I picked the children up from school, (didn't drive so walked everywhere) my sister and her daughter who was only 7 months old at the time were over. This was obviously to support with the children while I was having the c-section as I was booked in at 7am on the Wednesday and my husband (the children's dad) would be with me. We decided me, my sister, and the 3 children to go trick or treating. My children needed it. My sister wasn't from the area, she lives in Lincolnshire and she was with me. What could go wrong? We gave the children some dinner, got dressed up and off we went. We went out around 5.30am with the intention of a few streets and then coming back, however, we had so much fun! Everywhere was really creative and we enjoyed it so much we stayed out until 7pm when it began.

Labour. It was around 7pm, we'd just walked up a monster of a hill when I started to get labour pains, contractions. And I was struggling to breathe, well I was 39 weeks pregnant. My sister started to panic, rang the children's dad and he came to get us straight away (while telling me we shouldn't of gone out, altho he never offered to take them). We went home to grab the hospital bag and make the call. However, after 2 previous intense long labours, I realised I'd be without food once there, as they would monitor me and in case of surgery I wouldn't be allowed to eat. So I ate, I ate a spaghetti bolognese. And it was amazing! I enjoyed every second of it and I don’t regret it at all. With everything sorted we rang the labour ward and they made us a bed up, told us to come in to be monitored.

Hospital. It was nearly 10pm by the time I was fully admitted, and monitored and a decision was made to ring for the on call consultant paediatrician. Who, at that point told me we were staying in over night at the very least. I was still under the impression I could keep Wednesday's 7am slot open on the 2nd and stay in until then.

At around 11pm, the consultant anethatist came over, and suggested we have the spinal block put in, spoke to the paediatrician and a decision was made to deliver Charlie there and then. My previous 2 labours had only got to 5cm dilated (despite many interventions) I was almost 7 and having Charlie naturally could cause a haemorrhage so delivery was imminent. By 11.30pm I was being wheeled to theatre. And this is where it gets tricky. My previous emergency section was done on an epidural that was wrongly administered, which caused a gap in spinal fluid and meant I had to be put under general anaesthetic to deliver Charlie's sister. Because of these difficulties and the complications of previous deliveries this is why the length of time was taken to deliver Charlie safely.

The birth. The whole time I was in the pre-op room I was fixated on the clock, I wanted in. I wanted to deliver Charlie on Halloween. Just a few years earlier the thought of delivering a baby on Halloween petrified me. Now I wished it, I begged for it. I would of done anything to have Charlie on Halloween and not his brother's birthday. As the clock got closer to 12am I started to cry, because I knew, the boys would then have the same birthday. The staff just wanted a healthy delivery. But it was my worst nightmare. How would I manage every year? Charlie was finally born at 12.34am and surprisingly only 5 hours in labour, actually my shortest labour. And he was huge! Born at 39 weeks was 9lb 7oz! Of course he couldn't stay in any longer! He needed to come out. And the hair, so much hair!! My only child to be born with hair. Best thing about working in the hospital, the porter who collected me knew me.. The dispatch coordinator knew I had given birth as took the name and I asked him to announce it to the staff, who worked in the switchboard who were part of my team. By the time me and Charlie were on the ward and settled the congratulations from my colleagues had started to come in which made me feel a lot less alone.

So there we have it, the story of how I got 2 babies on the same day. He made an entrance. Took me a lot longer to write than I thought it would! Have loved sharing this memory.

Georgina x

Happy 9th Birthday Charlie

It’s Charlie’s 9th Birthday! It’s a super special one as he shares his birthday with his older brother, and today his brother is 18.

It’s been a lovely calm day, which was amazing. Charlie often gets overwhelmed on his birthday and it becomes too much. But today I seem to have cracked the balance. The gifts weren’t wrapped, I do this for 2 reasons - first is the effect wrapping paper has on the environment and secondly because unwrapping a present just causes more anxiety and for the last 2 weeks, I’ve had constant questions surrounding presents as Charlie hates the thought of surprises and not knowing. So I either keep them in a gift bag or in the brown amazon parcel boxes! This year all his presents came from the amazon delivery guy so it was really easy to manage that.

He got all presents that he had asked for, Heeley’s, a telescope and fish. And we have got to get the fish tank set up and organise fish before the next lockdown which starts Thursday. As usual though, he hasn’t open a couple of presents and that’s purely down to the fact it’s too overwhelming, and less is definitely more as he really can’t handle it. The noise, busyness and excitement of the day is real struggles.

We have gone out tonight for our evening meal and again that was really testing. We were there for an hour and there was perhaps 2 or 3 moments where I thought he could of easily run off due to the overwhelming and stimulating environment. And of course, because it was busy and noisy and has all the characteristics of an environment where he struggles the most.

Now it’s off to bed, although I think it will be difficult. Because he has so much he needs to process from the day, it really will take him a while to settle off. I am fully prepared for tonight’s battle, along with back to school tomorrow! I feel as though we have been off forever! Can’t wait to see what the next half term brings.

Happy 9th Birthday Charlie

Georgina

Half term has landed

It is officially half term. This is both my favourite and worst school holiday, my worst because of all the stress of the week and my favourite because for our family it holds so many precious memories. This holiday, isn't just a welcome break from school, it also has Halloween and my boys’ birthdays. Yes, we have 2 birthdays straight after Halloween, Charlie and his brother share a birthday. I will do another post on my birth story.

When I was a working single mother, I used to book this holiday off work, as much as I could just so I could be prepared for the boys’ birthdays and I could relax, I don't think I ever did though! It’s been a tricky one in the past though and at times I have booked a week away somewhere just so we get a good break too.

So what does half term 2020 have in store? As with most of our life choices, I've had to consciously consider all the events we would do, by planning around Charlie's needs which has become 2nd nature in this household. So far we have:

Sunday - Staunton Harold Reservoir

Monday - bluebells dairy farm

Tuesday - Calke Abbey

Wednesday - trip out with friends

Thursday - car has its MOT/halloween crafts

Friday - trip to see aunt and cousins

Saturday - Halloween

Sunday - birthday

So, as you can see I've tried to keep us busy and occupied and wanted to try and make this holiday work for us. So far, it’s not been the best!

Staunton Harold

Yesterday we took a trip to Staunton Harold, we’ve never been before so I was looking forward to it. We got lost, and ended up in a field with horses, I didn’t know if we would make it out of there alive! And then once we were out of that field we needed to walk out into a field full of sheep. It was a lot further than we thought and ended up out for 3 hours, and did over 10k steps! Was a result, and actually a decent night's sleep for a change!

Bluebells Dairy Farm

I think on hindsight I made a rubbish judgment here. They were all prebookable tickets, and I stupidly assumed there weren't many people going to be there. I was wrong, there was easily over 100, and that was just what I could see in the immediate background. It was definitely too busy, and with the majority being young preschoolers and babies, it was incredibly noisy. You get a voucher for a free pumpkin and you could pay for an extra pumpkin too, which I did. And we left without pumpkins!! After 15 minutes, it was just intolerable. And such a shame, as it did look like there was a lot to do there. I have written an email and expressed my concerns, especially to request a more quieter SEN session too.

Currently on my phone, in bed doing this. But wanted to do it while it's fresh in my mind, not a fan. I much prefer my laptop! But now my website is downloaded onto my phone, I can access it wherever I am, so hopefully be able to write these experiences and information down a lot more accessibly and of course as it happens.

Georgina x

The Wave, Coventry (Friday 23rd October)

A couple of weeks ago I booked tickets to the Wave in Coventry, which is a swimming pool with rides and a wave machine pool. However, when we got there it was shut! It’s just over an hour’s drive away, and we had to stop for petrol and stop for the toilet, not to mention the times I went wrong, damn the M42! As you can imagine, Charlie had the mother of all meltdowns, even though I did explain we had tickets for a couple of weeks time.

I was dreading taking him, Charlie tends to hold a grudge and remembers when he’s been done wrong, which is always why (in my opinion) any traumatic events affect him worse, because he holds onto that trauma. I had visions of him being confrontational to the staff, or just refusing to go in when we got there. I had such a high level of anxiety which probably didn’t help the situation. Again, I went wrong on the way down but fortunately we knew exactly where the pool was situated and where to park, which took away some of the stress on arriving.

Getting in

The queue was pretty big going in, and that was a little worrying, but they checked the ticket outside whilst queueing and there were signs with the QR code for track and trace in the line too, so that was done. We paid a discounted rate. Both junior disabled and accompanying carer were both at a reduced rate, I believe it was around £5/6 for the both of us it was £11 which was exceptionally reasonable. The website says take proof of disability, we did but it wasn’t checked. There were some disabled spaces alongside the pool, which of course would of made things even more accessible, however, there were no free spaces so we parked in the multi story car park on Salt Lane, it is about 2 minutes walk (directly behind the complex). If you do stay in the car park you can get a discount on parking if you pay inside the Wave. (Handy little hint).

The Wave

The waterpark is park of a multi leisure complex, it has a gym and a spa there too. The waterpark is up several flights of steps, however there is a lift. Because of coronavirus, it was operating at a limited capacity, so the changing area did not feel at all crowded as we went in, or the lockers. The lockers are free and you use the QR code on your wristband to open them. They offer 2 hour slots which was plenty of time. There are toilets and showers before you enter the park, and there are accessible shower chairs and toilets for disabled customers.

On entering, there is a small water play area which looks like it was designed for toddlers/pre-schoolers. A few slides, safe enough for adults, I know this because I went down them! To the left was stairs and to the right a ramp, taking you up to the next level.

The waterpark is operating a one way system and there was no access to food or drink, however, there is a kiosk inside the waterpark itself. The only bit I didn’t see is if there was a way to get up to the slides without using the stairs. The slides were another couple of stories up and Charlie, being afraid of heights refused to go up to go on them, so I didn’t notice whether or not someone with a physical disability was able to go up. However, I did notice 2 hoist chairs, one for the wave pool and one for the lazy river

Wave Pool

The wave pool was great, it was simply that, there was nothing else in there but water and every 15 minutes the waves came on. Charlie got right stuck in and maybe because of the restrictions it was fairly empty. We went twice in the 2 hours we were there and that was enough, however, there were a number of families especially those with young children and babies, that spent the whole time in there.

The Slides

I counted 5 slides, 3 that needed rings and 2 that were just people rides. Of course, there were plenty of rings and there were smallish queues but there were still queues. We didn’t fancy any of the slides, however, I can imagine for an adrenaline junkie it would of been brilliant. Just not for us.

Lazy River

The lazy river was amazing it was probably where we spent 1.5 hours out of the 2 hours we were there. Other than the river, which was standing level for both of us, which helped, there were some lights all the way around that changed the colour of the water. They were bold colours, red, blue, purple and green and changed intermittently which gave such a magical sensory feel. There were coloured buckets that tipped out water, and again had a sensory feel to them. In the centre of the river, there was an area with 4 different functions. At one end there was a jacuzzi style semi circle where you can sit down, a set of waterfalls to give you a neck massage, another jacuzzi style area but this time you can lie down and finally at the top end there was a water fountain out of the water. All really great for sensory feedback. I think that’s why we loved it!!

They have a variety of sessions, one for teens and adults, one for toddlers and of course my favourite a quiet session for those that would benefit from it. These special sessions however, do not run in the school holidays. There was quite loud music too, that may be worth noting. We had a really great afternoon and will definitely go back as a family with my older children. Well worth the drive. And now it’s half term! Lots planned for a change, fingers crossed it goes smoothly.

Love

Georgina x

The blogs have been published.

I started building this website last year, in order to share all the information and resources that I have learnt with other families, I probably started blogging around January. However, the website wasn’t finished and there was so much going on in our lives. We were trying to find the right provision, then we had to take Charlie’s EHCP to tribunal on appeal, and appeal a placement that the LA had named. I was at University taking a Master’s degree, and then Coronavirus happened! So everything stopped. Just so we could survive and get through the pandemic.

It was really important to me that the blog posts were written at the time of the events, especially surrounding the appeals process as I wanted to share the real life experience and feelings on it. At the time it was incredibly raw and stressful but I think it’s important to share that so that professionals know exactly how it impacts families. So I wrote them all in time and saved them. This was a mistake, they saved on the day I wrote them however, when you publish them they only have the published date on them!!! This is why the previous 40 blogs all have a little sentence with the date written on.

Also, I saved them somewhere which was not linked to the website itself. What a drama! So I’ve had to build a new page and then copy and paste them all in! All in order, all painstakingly long!! But I hope that it makes sense to the reader, and that they follow coherently …. I can hope! So our journey makes sense, as much as it can. And from now on, as things happen and our journey develops I’ll be able to share with you all what is going on with us.

I am also going to do topic blogs, blogs specifically surrounding topics such as sleep, sensory integration, EHCP and education and many other snippets of information that I feel I can share with families.

So glad it’s finally done and we are up and running! What a relief.

Georgina x

The dreaded coronavirus test

This blog post was written 14/10/2020

So, yesterday (13/10/2020) Charlie developed a dry new persistent cough, around tea time. For anyone not northern enough to know what tea-time is, it is the evening meal time of the day! I considered if it was just a cough, but it was so persistent, and the heating wasn’t on so I did think I have got to see if I can get further advice about this. I filled out the online form and was advised a health professional will call us back.

The doctor was lovely, and very thorough, please don’t hesitate to ask them questions. I asked loads!! As it’s not just our family, Charlie spends time at his dad’s where there are another 2 children, 1 a child under 5 and my daughter car shares to school, so that’s another household, and my son has a girlfriend who he visits many times a week. So, as you can see, that is where the importance of social bubbles comes from and the risks from mixing households because now there is 4 households directly at risk from our 1 household, and that is concerning.

The test came Thursday, so relatively quick but not as quick if we had been able to go to a test centre. However, we can’t go to a test centre as Charlie is a runner. And if I had taken him to the test centre he would undoubtedly have a meltdown and run off. It is not worth the risk for sure. I tried to find some resources online that would help with the test and asked the National Autistic Society but to no avail, very frustrating.

So the tests arrived, we did it with bribery! Which meant I paid for a game for Charlie for his PlayStation, it was a slime game!! Brilliant!! Anyway, I’m not convinced I have done it right or for long enough, and now it’s the agonising wait for the results - which should be text to me. But in the meantime, no work, no dads, no leaving the house, no dog walks, no food shopping. Charlie’s paternal grandparents have been great, checking in on us every day and offering to do some shopping. We’re ok though as I got it delivered this morning. Yay!

I will keep you posted.

Georgina x

Get ready for the launch.

This blog post was written 11/10/2020

I wrote back in March, or maybe April that the intention was to publish these blogs and this website. I had hoped that I would of done this a lot sooner, however, it has been so difficult to mentally make myself available to doing this.

Other than Covid-19 taking over everyone’s lives, my dissertation and University degree took more out of me than anticipated, I’ve had a serious knock to my mental health, this has been a culmination of things from the appeal process, worrying about having to attend a tribunal, Charlie starting school and transitioning and then issues with co-parenting. All of this together has been a rollercoaster ride of emotions and mental anguish, stop the world I want to get off!!

So the publishing of this site and of my blogs has been seriously delayed. I wanted to put 110% into this, as I think it’s vital for families and anyone that is experiencing issues through SEN and/or any disability to have resources and support welcomed to them. Especially free support, which I know is not always possible.

It’s going to be hard to navigate, I have never done this before, adding blogs to social media sites and linking them together! So fingers crossed, I don’t make mess of it! And we can get this out and help families that really need it.

Georgina x

Therapies are in, education out for now.

This blog post was written 11/10/2020

So it’s fair to say that this transition is just not going to plan. I had hoped for a slow start of an hour or so a day, and then within a month maybe we would of been 5 days a week, all mornings or even whole days. But no, it’s not going well. It’s now down to just therapy sessions (I’ll come back to that in a moment). I think we have all underestimated that Charlie was in the wrong setting for too long, and it has caused some real severe trauma at school, and it has now led to such a distrust in the education system that it means he can’t access a school setting at all.

So for now, we have access to the therapies. These are life changing therapies in speech and language and occupational therapies that will make sure Charlie has the best opportunities at life, and without them, he will almost definitely struggle to maintain any form of secure life as an adult and will always struggle, and I definitely don’t want that for him, he deserves better. Charlie deserves a positive secure life, inclusive of his disabilities and able to enjoy life and take part in every aspect. It saddens me so much to know that he will forever struggle. And what is more concerning, is if I didn’t fight and appeal for his EHCP, then he wouldn’t of had access to the amazing on site therapies that his independent specialist school can offer. And this would not be an option if we were to home school and that I think is so important as I’m asked all the time, wouldn’t it be better for Charlie to be home schooled? and yes, in an ideal world that would make sense due to his trauma and anxiety in an educational setting, however, given the therapies he needs, this could not be done at home and would massively put Charlie at a disadvantage in the future. He desperately needs at least speech and language therapy that I can not deliver at home. So school is definitely the best place for him.

We will, for now, see how this timetable works but it is only 45mins twice a week. I am trying to find free educational trips to go on, so far we have a couple of museums and places of historical interest but it’s so hard to find places close by and with limited people present! As he struggles so much in crowds.

As always, stay safe!

Georgina x

20 days down.

This blog post was written 28/9/2020

Today has been a good day. We have managed 2 hours in school and have achieved outdoor play, messy play, science experiments, magic tricks and a session with the speech and language therapist! What a morning.

The first month has not gone well, it has been a long, slow transition with Charlie only attending for 1 hour twice a week in some weeks, and some weeks only managing 1 x 1hour session. It’s been exhausting, but with the level of separation anxiety Charlie has, it is imperative that the transition is slow, managed and on Charlie’s terms in order for it to be successful. But today, I genuinely felt at ease. I felt confident, Charlie felt confident and we can definitely build on that.

I heard from the legal service that are dealing with our tribunal case and they have advised that we should settle the appeal of the EHCP out of court and on the 7th October, that is fantastic! I am so pleased! I can’t wait for it to be over. And the bonus is that I won’t need to pay for the appearances of the witnesses that wrote our reports. That is definitely a bonus! I feel like the last year has totally broken me emotionally and now I am feeling so much better about things.

I also joined the SENDIASS Advisory Board, this is so I can be a support to other families and be a voice for SEN children that are going through this process. It is an incredibly hard process to navigate and the hope is that it makes the process easier for those families and it doesn’t cause the same level of pain and emotional turmoil that it has done for us. Next meeting is in November.

And finally, I passed my masters degree in Criminal Justice. I got the result through today, yet, won’t get official confirmation until November. I feel like celebrating, but then I do not dare!! I feel as if I have to wait until I get the final evidence in black and white.

Until then, I hear cases of coronavirus are rising!

Stay safe!

Georgina X

First day nerves. Anxiety sucks.

This blog post was written 8/9/2020

Charlie was well prepared. He was told the previous evening of the upcoming visit to school. He was told this morning of the upcoming visit. He packed his own lunchbox and got himself ready = literally such an achievement in this house. And he was ready to go! However, anxiety started to rear it’s ugly head the minute we walked through the school gates. And when the teacher suggested we take a temperature as per covid-19 guidelines, he was off!!! Awful experience. The level of running off (other than Cornwall) has dropped dramatically so the fact he is now running off was devastating. We were unprepared for this, we did not know and I could not prepare him for this to help with the transition.

The compromise with the temperature check was that he holds the thermometer himself, and checks his own temperature or alternatively I can check it before he goes in. But we agreed on Charlie checking it himself. In the school we went, played on the swing, played a game of Minecraft Uno and that was enough. Charlie wanted to go. I stayed with him the whole time, purely because the separation anxiety would not of allowed for anything else.

We left after 45minutes. I felt like this was a small achievement. In fact any time within a school setting is an achievement. And after a 6.5 month break because of Covid-19 I do feel that it will be a slow consistent transition, that’s what it needs to be. So off we went, saw a lovely little Mercedes classic car on the way out. I think that made his day!!! Charlie has a soft spot for cars.

We decided on the next visit to be Thursday, so I will blog once again, more so that I can keep a record as it is handy when discussing issues with professionals, I then have something that I can refer to that is in the recent events. There are many many experiences that we have had in this journey that I wish I had been blogging for so that I can then refer back to the feelings, emotions, hardship and struggles and likewise as a tool to learn from these experiences so that we do not need to go through that again.

Speak to you on Thursday.

Georgina x

CORNWALL 2020. Divided holidays are the way forward.

This blog post was written on 4/9/2020

I may of mentioned it in a previous blog, I am not sure. But this summer I took the kids to St. Ives for a few days for a holiday. With me working Saturdays and Charlie now going to his dad’s on the weekends, I decided that we would go Monday-Friday. I booked it in July I think, with the aim of having a nice relaxing week in the countryside, so we all could get a break.

Monday

The travel down. Very surprised, good no moaning children, the dogs slept (yes, I took the 2 dogs with us). We stopped once for food and to let the dogs have a run around, they were very good. Everyone was very good. 6.5hours travelling so was pretty exhausted by the time we got there. And then we had to go food shopping! Pretty much wiped out the first day. Which was quite frustrating, will definitely not to that again.

Tuesday

Bad weather, raining, moody overtired children. Went to St Ives, nothing could of prepared me for how busy and confusing it was. Couldn’t find a beach that was dog friendly. Walked around for ages, everyone hot and sweaty! Because, although it was raining on the campsite, it was sunny down by the beach! Awful. Then the mother of all meltdowns, and a child running off….. guess who? Terrible experience. Losing a child in St. Ives, not being able to keep him safe, 2 dogs, and then 2 other tired children all complaining about the child having a meltdown as if he was a spoilt kid!! We were unprepared for the beach, so then when Charlie ran into the water and soaked himself, he ended up very cold, wet, no clean , dry clothes which obviously contributed to the meltdown. And the realisation that he didn’t have the concept or comprehension to understand that if he went in the water now he would of had to walk back to the car wet!!!! And that’s where autism wins. Because my child lacks awareness of how the world works, consequences and the alternatives when things go wrong.

So 3 children, 2 dogs, 1 parent… not a happy time. I can’t really remember what we did for the rest of Tuesday, it’s a blur. But there was a woodland walk, that we went in, with a secluded park and that was definitely a highlight. To have a woodland park to ourselves.

Wednesday

To book swimming in the pool, you have to go in the morning and reserve your spot at 9.30am for the day. So I went, 8.50am to stand in line and wait for a spot. The only spot we could get was 4pm. Crazy, that I waited all that time just to get 4pm. Determined it wasn’t going to ruin the only “sunny” day there was, I got the kids up and ready. And headed to a nearby beach. What a mission, because it had to be dog friendly. Well it was a mission, but we got there, down to the beach. Only to discover my middle child hadn’t packed any swimming stuff AT ALL!!!! because I had made a remark saying “it’s going to rain all week” so she came without anything. So, I happy 2 happy children, playing in the sea and the sand and making sandcastles, and 1 angry child, who doesn’t want to be part of our family. Great!! Can’t make everyone happy! So, we cut the beach short after a couple of hours, and disappear to go find a swimming costume so at least she can go to the pool later. She hates the pool later. Spends less than 15 mins in there. Swimming is terrible, I only put 3 names down as I thought my daughter wasn’t swimming, therefore, only 3 of us could go in. That meant while my other 2 children was getting out because they felt the pool was too small and wasn’t enjoying it. I couldn’t get in and keep Charlie company. It was only 1 hour sessions anyway, and they ended up cutting it off after 45 mins because there wasn’t enough water in the pool. Disaster.

Decided to get dressed, go for food, luckily the restaurant onsite was taking part in the “eat out to help out” scheme, so we ate pretty cheaply to be fair. And then at around 8pm, I decided we would drive back down to the beach so the boys could have a little play. My daughter decided that she didn’t want to come, so I only took the boys. The beach was nice then, quiet, calm, lots of people still enjoying it. But made me realise the importance of being there on quieter days.

Thursday

This literally was the day from absolute hell!! So, with the disappointment of the onsite swimming pool, I had decided to book us all in at a local outside pool. Amazing, an outdoor swimming pool, a real big, Olympic sized one. The kids were excited. And then we woke up, and it poured down, poured and poured. There was no way we were going out in this!!! I couldn’t drive down the country lanes in it, let alone swim. And that’s when the first meltdown came. Because there was a change of plan and Charlie couldn’t quite understand why it had changed and why he was not going swimming. This must of lasted around 3 hours, and the last half hour or so, one of my other children had got so agitated by the meltdown that they started to display challenging behaviour. There was a lot of swearing, aggressive behaviour between them. And nothing seemed to calm the other down. And I just wanted to go home. This was hell, trying to be referee between two warring siblings is hard enough at the best of times, but trying to do it amidst meltdown mode, isolated in a holiday park, alone, with 3 children and 2 dogs was scary. I was not feeling safe at all.

When I finally told everyone, the plan was to pack up and go home early, we couldn’t do anything because of the weather and the behaviour. Like a miracle, it stopped raining and the sun just came out! It was a miracle, so then I told everyone to get ready because we were 100% getting out of this holiday home. Being cooped up together is just not healthy (how we all survived lockdown) I will never know.

Land’s End

I decided that we should go to Land’s End, somewhere I have absolutely always wanted to go, lots of open space, and I hoped it would occupy the children enough to calm them down. Well, that didn’t entirely work. Unfortunately, after an hour, we had threats of jumping of the cliffs. And everyone was full of anxiety, stepping on egg shells not wanting to break the calm. So after maybe 1.5hours we headed back to the car. And back to the holiday park for some dinner.

It must of been around 4.30pm by this time. I had decided to buy wash tokens, get our holiday washing done and get packing. And then by 6pm, I started packing up the car, told the kids that we were going that night instead of tomorrow morning. I just wanted out if I’m honest, our own beds and the comfort of our own home. We drove through the night, arriving home just before midnight. And Charlie slept until after Birmingham, until we were an hour from home. In hindsight, we will definitely do that again. We did bring things like the PlayStation, Charlie’s fleecy blanket and obviously the dogs but it wasn’t enough. And it got me really thinking.

I can’t go on holiday with all three of them again, it’s too stressful and it causes too much conflict. And ideally, we need a holiday home base. We need somewhere that is the same, every year, so it’s familiar. So we can go down to relax and really relax because of somewhere that is Charlie focused. And I think that will need to be a long term goal for me.

This is so long! Probably the longest blog post I’ve ever written.

Stay safe

Georgina x

Today we meet the teachers.

This blog post was written 4/9/2020

It feels like a lifetime since I first went to visit HG school, in November 2019 it was, so almost a year ago! And today we get to walk around Charlie’s new unit, and meet his teachers and his teaching assistants and any children that are already in the unit (there is currently one child, one not yet started, Charlie and a little girl starting on Monday). I’ve already had a lot of “no” lots of refusal, lots of anxiety lots of death stares. Charlie loves to give me the death stare when he is not happy.

We are both full of anxiety. Charlie for going to a new place, seeing new people and seeing a new environment which historically he associates with trauma. This was the tests of all tests. For me, it was simply him going into yet another educational setting not knowing if he will be received there and if they are equipped to deal with his ways. Is this the right place for him? Will we experience the same trauma, will I add to his trauma? Will we be successful.

So my anxiety and his anxiety is not a good mix. But I have to do it, it took so much to get here. The cost not only financial but to my mental health. To Charlie’s, to my abilities to care for my older children too. As the level of care and support Charlie needs often supersedes them. Never intentionally but it is how it is.

The visit was a success, we had to have a little run out into the fields close by before we went in. I parked the car, and we went for a bit of a run. And then went to the school visit. This works (sometimes) it’s a de-escalation method and it helps bring Charlie back into the present when the anxieties are ruling his life. I have learnt this through educating myself, be being someone that had to skill up and learn everything I needed to in order to support my child to the best I could.

The Visit.

Charlie spent a long time glued to my phone, playing a game, being what I can imagine the professionals call a selective mute. Choosing not to speak or engage because his anxieties wouldn’t allow it. By some utter miracle, the teacher is one that has previously known Charlie. A teacher from a previous school of which he had a traumatic experience and was later permanently excluded from. This teacher didn’t teach him, he was never in her class, however, was in a classroom close by and at times had conversations, and involvement, as did the whole lower school (foundation years) simply because the school was never set up to support a child like Charlie.

We had a nice look around. Chose a desk, and a room. That’s right. Charlie has a room, just for him! That he can set up with his learning and his interests, we saw outside, and a playground. We saw so much! We were there for an hour, lots of paperwork to take away because I am the expert and I know Charlie the best.

And it’s been left for us to choose a start date. I actually don’t think it will be long! Because he’s so excited, he can’t wait to choose his room and play on the equipment and it is full of new opportunities for him. I am looking forward to seeing how he progresses and finally moving forward with education.

Georgina x

University has finished. Yay!

This blog post was written on 19/8/2020

I’m not too sure how much you are all aware but I have been studying for my MSc in Criminal Justice, part time, through distance learning. And it’s finally all over! My end independent project was a 15,000 word research project on the relationship between domestic abuse and international parental child abduction, extremely informative but absolutely exhausting.

We’re off to Cornwall next week, and I did toy with the idea of taking my laptop with me so that I can keep blogging from Cornwall. However, I want a real break from everything in my life. This does not or will not ever mean a break from ASD life, in fact, being on holiday is the worst. We have had some unbelievably tough times on holiday and struggle massively. Anyway I digress……

University. i’m extremely pleased its over, but since having Charlie and realising the extent of his SEN needs I no longer feel able to progress in my chosen casreer path. Its sad really sad, I feel like I waited forever to do something with my career, that would suit me, that I would enjoy, adn then I got hit with the realisation that my career will never suit Charlie’s needs and I would have to back shelf it. And no one ever tells you that, no one ever tells you how much you have to shelf your career, job opportunities, pension and life goals. It has been a huge wake up call. I have been so lucky that up until 2017, the children always adapted to any job I took on, any shift pattern and any career opportunities I found, I took them without a second thought because I had that safety net and security of knowing that I would be able to live a life following my career dreams. So even though becoming a single mother had left me without the ability to travel, holiday and have a life I freely wanted, I was always confident that I would be able to work. And that has not happened.

For a short time, I was totally reliant on the government for financial support, and its heart breaking. When you have become so self sufficient and financially stable to then rely on credit cards and the government to hold you up its you hard, destroys your self worth and self esteem, its an untold trauma.

Speaking of credit cards, it was so complex getting the postgraduate student finance loan that I abandoned it and paid for my course, through credit cards. Which I will continue to pay for the next 6 months or so. And hopefully then they will be paid off. Well I hope.

So there we have it, my postgraduate dream gone, but I didn’t want the difficulties I had to overshadow life completely and it was so important for me to continue on a path that I felt was right for me. So, although the possibility of a career in criminal justice has diminished for me, I didn’t see why I had to give up getting a qualification in that level in my preferred choice. That was a personal goal, not a professional one and I achieved it. and for that I will be forever grateful.

I think, for now my only job is to make sure my children have enough love and security to support them through their childhoods.

Stay safe

Georgina x

Normality is returning!

This blog post was written on 5/8/2020

I can’t believe that after 5 months off, there is some normality returning. This is with my return to work, which I am super excited about! I only actually work contractually on a Saturday, but I pick up shifts throughout the week that are Charlie dependent I.E when Charlie is safe at school and I can commit to work. Hopefully, life will be easier still now Charlie regularly sees his Dad on a Saturday. But we will see, that is still temperamental at present. We’ve had a good few weeks EHCP wise, the Working Document is well on it’s way, all the commissioned reports are in, we had good solid reports done from Occupational Therapy, Speech and Language therapy and one from Social Care, we had an assessment done from them too, under section 17 of the Children’s and Families Act. I have honestly learnt so much along this journey and I can’t wait until I can really share all the knowledge that I’ve learnt and help the thousands of families that find themselves battling a broken system like I have done.

We have a holiday booked, it’s to Cornwall, never been before so really looking forward to going and spending some time with my little tribe and a nice few days away will be so good when I have handed in my dissertation, back at work and kids almost back at school and finally moving forward in this dreadful pandemic. Everyone has been totally shocked and shook up over the virus that absolutely took over the world, and bit by bit, piece by piece, everyone is starting to pick themselves back up and move on with their lives and find a way of living alongside this virus. With the hope one day there will be a vaccine and the healthcare to make sure no one close to us loses their lives.

So the working document is with Mrs H, and she is glancing over it to make sure there’s nothing amiss, I’m always so grateful for the work that she does for us and the ways she can support us.

The family fund money has finally been spent! Because of covid19 I was unable to buy the swing set I wanted for Charlie, however, this is now in stock and it has been purchased. Won’t be here until after our holiday though unfortunately.

Sleep is still an absolute nightmare!! I have tried so many other things, I have uploaded them to Facebook and Instagram, however, there were some gummies (sweets) that contained melatonin, Charlie hated the taste. Next I tried a weighted blanket from Amazon, too heavy! Didn’t like it, luckily I gave it to Isla, my daughter. And I’ve just bought some sleep well milk! We will see how that goes!

One day I will figure out how to add links into these, but the overall my intention is just to write blogs which are based on topics, like sleep, outdoor play, occupational therapy and I’m really hoping I’ll be ready to do that in September!!

Wish me luck

Stay safe

Georgina x

When the legals get involved.

This blog post was written on 10/7/2020

So, another week has gone by, lots of changes. So far I am officially eligible for legal aid, that means we now have solicitors on board to hope for the best outcome and plan for Charlie. Such a relief!! I spoke with the paralegal today and the service we are using are called Coram legal centre, they are based down south, but as all the meetings are zoom or telephone calls, this works out fine. The LA have both agreed to withdraw the school up in Chesterfield and to consult with my parental preference school, such a big achievement for us. We should know by the 24th of July whether they will name our preference school HG, in section I and then from there, we can remove section I from appeal.

It really has been so difficult, to get into place the things we need. Even though, they are so evident and really should be assessed and acknowledged. It hurts me to imagine what sort of fight Charlie would of had, without me backing him up and fighting his corner. The LA solicitor sent his action point response over to me, it was so nice to bat it back and tell him I have legal representation. It was such a relief, and definitely a bittersweet moment. What gets me the most though, is a lot of this could of been avoided, if simple assessments were just given instead of being blocked.

We had a social care assessment on Wednesday, authorised by the LA, to see if there were any gaps in Charlie’s social care. Of course there are. He doesn’t access the community like other children of his age. We can’t just nip to the park, it’s too overwhelming for him. Especially on a warm day when the park is busy and noisy. I have asked for grants from the Family Fund to give us an accessible garden. Unfortunately the play equipment I want is out of stock. Ideally if I had the money, time and energy, I would make my little superhero a sensory garden.

We also had a zoom Occupational Therapy appointment (OT) that makes part of the assessment ready to send off to the tribunal. It’s all getting rather messy if I’m honest, and I’m glad now that the solicitor can take part of the burden. Charlie has struggled to engage with any of the assessments or therapies which is a shame as it is all for his benefit. We have a therapy session with relax kids this afternoon. That is going well, however, I’m not sure how much else she can do for us, as a family or together at the moment.

Hopefully, if I have the energy I will start decorating Isla’s bedroom this weekend. She is away with her friend and I think she would be so happy to come back to her bedroom decorated. But we will see, I need to finish University and I just have so much on my plate. Including my car, which is still not fixed!!!

The car is of constant stress to me right now.

As always, stay safe

Georgina x

The battle has been won, but the war is not over!

This blog post was written on 3/7/2020

Well fantastic news from camp Charlie! Sunday, I wrote a rather long email to the SEND manager of our local LA. Expressing the difficulties, between lack of communication and frustration with time limits. It has really taken it’s toll, and I think a lot could of been avoided.

Well Tuesday I got the most amazing email, it was very late…. definitely passed 10pm!! I’d had a crap day because the clutch had gone on my car. But this email, a response to Sunday’s email stated that after a review of Charlie’s case it was decided that Holly House was actually not a suitable provision for Charlie. Well I did say!!!!! So all the stress, energy, negativity has been for nothing! It is really frustrating, however, the war is not over. I still need to plod on with the case and even go as far as tribunal in October.

This is because, actually although they have taken HH away they still haven’t agreed HG! What! Yep! So now they have zero solutions and they can not give to me a provision or an alternative, and are not agreeing to my placement either. It is all very time consuming and it kills my energy it really does, I feel so mentally drained and I am so exhausted by it all.

I have had to prove my income, savings, wages, benefits and identity for the solicitors that will act on our behalf and when I get confirmation of this, I will share it online. Because it’s so so so important to share knowledge and resources and if it’s free then even better!! This makes me so happy when I find free stuff, as our roles as parent carers are so difficult. I also believe in transparency when sharing our journey.

Another piece of good news is I have been accepted onto the SENDIASS Advisory Board. It’s a volunteer opportunity but I hope to really make a difference to the way that the LA conduct their operations and remember it is there to out the children’s needs first. This is for them after all, and if anything I am incredibly passionate about my children and family. Yvonne Newbold’s book is very insightful.

University is great, I’m onto the last stretch now, just re-structuring the dissertation, a mere 15,000 words on parental abduction and domestic abuse. It’s due in on the 24th of August. And my ideal plan would see, me booking a week away with the children and the dogs so that we can really truly relax. However, I don’t know if this will be possible! And it really does feel like too far in the future. What would be nice is a £2000 prize win and a late booking, if someone can arrange that I will love you forever.

And I still have to sort my car!! What a headache.

As ever, stay safe!

Georgina x

Life is overwhelming when you are preparing for a tribunal.

This blog post was written on 28/6/2020

I honestly do not know where the last month has gone! I had vowed to write weekly, and that has just not happened. But we have had so much going on. Still in the lesser stages of lockdown, what I mean by this is that many of the restrictions have been lifted, the majority of people are back at work but there are still restrictions in place. None of the children are back at school, and possibly won’t be until September, when they will have had a whole 6 months off. Potentially for Charlie, that even might be October, as I’m unsure where to send him just for a few weeks.

Right, news! There is lots of it, hang tight. The more positive news of course, is the tribunal. So far, I have enlisted help from Small Talk speech therapy, who has given us a private assessment and diagnosed Charlie with a Language Disorder, which I did know already, it’s not too much of a surprise, however, she had quantified and specified exactly what Charlie needs from a provision and that is key when writing an EHCP. This is key as the staff need to know how much therapy to deliver, to ensure a child’s needs are met.

Next on the list, was occupational therapy. This assessment is much more intense. The speech therapy one was a phone call, questionnaires and a zoom call to do the assessment. However, the OT one so far has been a phone call, numerous emails, lots of intensive questionnaires, a zoom call in a week’s time and then the final face to face contact a week after that. We then have a really tight deadline of only 2 weeks to get the evidence into the hearing bundle which needs to be completed by 28th July.

We are still having weekly zoom sessions with Natalie from Relax Kids, she sends us homework and resources which is just fantastic. Really worth the time and the money to be honest, we would never be able to take part in a community based activity, as Charlie’s anxieties mean that he really struggles with doing anything with people he doesn’t know.

I have completed a draft of my dissertation, and that has been so time consuming. Along with the tribunal case work and just raising three children single handedly, its been exhausting. So, I took the decision to look at legal aid and see if a solicitor can support us through the tribunal. I have the forms to fill out so looking forward to the outcome of that. What I find most disheartening in all this tribunal process is that the LA have solicitors, and our case has just been handed over to them. Almost like the 3 years of working on EHCPs and schools with a caseworker has been for nothing, and our case has been handed off as if we weren’t even important. There’s been no communication around this either, so I have discovered this, through another SEN parent, when raising concerns that the LA weren’t emailing me back.

On speaking to the administrator at the solicitors, she suggested the first job was going to be to commission an educational psychologist to view both schools. If she deems HH in chesterfield as unsuitable for Charlie’s needs then there is a possibility the tribunal will rule in our favour of placement. Happy days!! Long way to go yet though, can’t get too excited at this.

We’ve been having some teething problems with contact with Dad. Contact has had to be on different days and times, which can be frustrating. Charlie needs such a set routine and structure as he quite easily gets dysregulated when things aren’t structured around him. I’m hoping it doesn’t drift off and get impossible to manage, because at that point I’ll really have to decide what’s in Charlie’s best interests overall.

We got the grant from Family Fund for play equipment. I picked a nice swing set with a rope ladder but unfortunately it is out of stock until August! So I will keep looking as I desperately want more for Charlie to do in the gardens so it limits out reasons to go out of the house. I’ve also seen some rock climbing footwells, that you can attach to the outside of buildings, that would be awesome too, as we have quite a high shed that he would be able to climb.

Charlie is currently obsessed with anime. Could be worse.

Stay safe

Georgina x

Finally time for positive news.

This blog post was written on 3/6/2020

So, on Monday we did a relax kids zoom session with Natalie. Relax kids is a franchise/brand that help children learn emotional literacy and coaching in a way to manage their emotions. Sessions are 1:1 or family, normally they do group sessions in the community and school sessions too. Their aim is to provide children and their parents/carers with individual toolkits so in moments of emotional distress we can help them. There’s a lot to learn! Sessions are £20.

Next week I will be doing the session with my 2 older children so that they can both benefit from the techniques and learn more about their brother’s emotions and try and educate them about him a bit better so that they can understand him. And then going from there, I’m not sure if Charlie will take part but I am hopeful, if not it can be used for me to get what I need from it, in order to support him.

Tuesday, we have a tribunal date! Amazing! Not until October, however, plenty of time now to prepare and make a good solid case. And of course, get the result that we want and need for Charlie. It will be so satisfying when I take on the LA no matter what the outcomes. They have given us a 2 day hearing, I take from that that the case is complex and we have a lot of evidence so it is needed. And there is time to bring in witnesses so I may need pay put more money to get some official assessments done. Of course Mrs H is there by my side like the guardian angel she is, ready to help me out. I’m not sure if the courts will be open by then and I will get a chance to attend or not. Or if it will just be a visual hearing through a conference call. I know I have a lot of work to do though.

Thursday, I have a full day’s conference with SEN legal teams. A brilliant resource that I found on Facebook that, are offering a full free day’s worth of legal support for EHCP’s so hopefully I can get some valuable information from that. All knowledge is power. Finally Yvonne Newbold is doing another webinar on Saturday and this one is around sensory processing and the impact it has on behaviour.

So much going on right now! On top of that I have some minor sibling issues between all the kids, they are delightful when they are arguing amongst one another. I am also only 3 months away from finishing my dissertation and my degree, and that will be lovely when that is complete as I can then put my heart and soul into fighting for Charlie’s education. And hopefully getting the result that we need,

I may not be on much in the next couple of weeks, as I just have so much to do in the next few weeks but fingers crossed lots to share when it’s done.

Lots of love

Georgina x

I'm going webinar crazy

This blog post was written on 29/5/2020

So, as a way of moving forward and living alongside Covid a lot of companies and organisations have started to deliver online training and services in the form of webinars. So I have signed up!! I am taking charge and doing as many as I can and taking advantage of not having to leave home to attend things. Which is fantastic! Naturally. So far i’ve done one with Yvonne Newbold about conflict in send families, There is another one next week, I may not be able to join that one as we have a lot on. Then next Saturday there is one on sensory processing, looking forward to that one. And finally, there is one on PDA (Pathological Demand Avoidance) on the 11th June, that is with sunshine support.

I’ve got a couple of books to read and review, however, I am currently in the final months of my postgrad degree so some things will have to wait! It will be so nice when it is complete so that I can then fully concentrate on this site, and build it up too. The blog and the social media also! I don’t think you fully realise the extent of what running community pages means until you actually do it. It’s a lot of responsibility to get things right and be accountable for what you post. the content. And I am hoping not to screw that up!!

Still no news on the tribunal, but as always, little glimmers of hope. Charlie took it upon himself to write in my notebook yesterday and copy the words down from a list I had written and tick them off. It is a really small thing but to us it means the world as Charlie never writes for himself and it's a huge milestone for him regardless.

I’ve abandoned my plans for a summer house, that would serve the purpose of a therapy room for Charlie and have all the equipment that I continuously buy for him. It all comes from OT recommendations and all serves the purpose for his sensory needs. However, after a long think and all the extra money I would have to put into the project, I decided that it was not worth it. I have now decided that we will buy some very much needed play equipment for our garden that we had done last year.

Every year (2 years so far) I apply for the family fund, and this year I have decided to use it for the play equipment, I will write another blog post specifically on the family fund so that it is easier to find and link to things.

Will update as soon as I am able to regarding the webinars.

Stay safe

Georgina x

Life as we know it has been forgotten.

This blog post was written on 26/5/2020

There is literally no more routine, no more structure, our days only run into each other no clear boundary. The one thing I can always count on is Mondays are Aldi days. However, this weekend was Bank Holiday and it messed us right up!! I actually genuinely love my little time out, in the car and playing some music. It is the only time I get for myself now.

Saturdays are going well with Charlie’s dad. He has been 3 times now, however, the day after he comes back is always horrific!!! It’s term is masking. And it is when a child with autism, and/or additional needs behaves in a specific way in a different environment to ensure their needs are met in that environment. And then when they are in other environments, they can be their true selves. It happens mostly in the school/home environment. A lot of children mask in school, making it impossible for the parents to get support from the schools as they don’t see the true extent of the child’s difficulties. Luckily for me, Charlie is the same in both school and home. I would say now he is worse in school, and he is better at home, although on occasions Charlie has spilled out at home after a particularly bad day at school.

So, he definitely masks at his dad’s. I’ve had to in the past, take video evidence of him physically assaulting me in meltdown and then send it to him, so that he can understand the behaviours from my point of view. It is incredibly hard to co-parent. We have very different expectations and I find it all very frustrating. For the other children, we co-parent really well and have no issues. It’s a funny one for sure.

There’s really not much to tell you, still no news on the tribunal I think it’s been 5 or 6 weeks now. We are going to be starting some sessions with Relax kids. Hopefully some emotional literacy, so that Charlie can read his emotions better and get some techniques on how to calm himself down. I’m hoping for some positive changes for that. He has totally regressed at sleeping. And still no school work!! We do try and watch a documentary every day though. At the moment we are on May half term. But I am fairly confident that we will not be going back to school, not even in September.

And even if we do get HG, it will be a slow transition. With a very part time timetable, perhaps only 1 hour a day to start with. And maybe not even every day of the week. We will have to just wait and see. If there is no HG, then it will be home school. As I physically can not put myself through the school searching again.

Oh and we got a pool! It’s fab! Charlie is really missing swimming, so a paddling pool in the garden has been an absolute god send.

Take care all

Georgina x