The boy showers!

This blog post was written on 3/5/2020

Not sure if it is down to the lack of an education setting, or lack of being forced into a setting that doesn’t meet need. Or the fact that there are no longer pressures that Charlie faces educationally, but there have been some big changes in Charlie in the last few days. Changes that mean I’ve been able to engage and parent him just how I want to and that has made me so happy.

In the last few days, Charlie has got himself dressed in the mornings, brushed his teeth twice a day, taken from the fact that his older siblings are doing their teeth and he wants to join in. He’s asked to come with me, when I’ve gone out in the car and the best of all he wanted a shower!! This is incredible. Charlie has an aversion to the shower, it absolutely traumatises him, even the bath traumatises him, all personal care does. So the fact that Charlie has managed to get in the shower has really been incredible and I am so happy about this.

I feel like there is so much hope. Charlie’s sensory issues and autism doesn't disable him and definitely doesn’t define him, very small steps but definitely positive steps forward. Another absolute miracle has been resumed contact with Dad. He came to pick up Charlie’s older sister, after she had arranged to spend the weekend with him. Charlie asked if he could go the following weekend, which was yesterday and Charlie spent the day there which was wonderful.

Not only does Charlie get to see and spend time with his father, but also many of his paternal relatives too, I get respite and a few hours with my other children which is just priceless. One of the hardest parts of raising Charlie is the lack of support and childcare there is for children like him, and because of this, and because of the fact he is a 24/7 child it means my other children often miss out on having me too. It is definitely something that I will always promote and bring awareness too, the lack of support and the invisibility of siblings of children with additional needs.

And finally, probably the very best news of this week, which has absolutely blown me away as we have had more happiness this week that we have in a very long time, is that I got a swivel egg chair from Ikea. Thoroughly recommend this product. Charlie loves it! He literally spins in it all day, its the best money I have ever spent and to be fair, the ££’s are building! We are going nowhere, so spending nothing, so it’s enabled me to save up and buy some essential sensory bits for Charlie.

Still no news on the appeal. And one of our dogs is quite sick, which is a little bit devastating. I am at the vets tomorrow so will fill you all in when I get the news.

Stay Safe

Georgina x

Lockdown is lonnnnnnnnnnnnng

This blog post was written 25/4/2020

I honestly can’t remember how long we’ve been on lockdown, how long we have been off school, how long we have left of lockdown. The days are rolling into one, and every day feels so long with no routine and no structure and this is really not great for this household.

My middle child has gone to the children’s dad for a few days, and like a miracle Dad has suggested a few weekend visits working up to full weekend overnight visits! He is a lot more stable now to make a commitment. I am very excited, not only for the respite but for the chance for Charlie to bond with his dad, and for someone else to know his needs and be able to manage them. I think there is definitely a long way to go before that though. We will see how the Saturdays go before a longer commitment.

Sleeping has totally regressed, Charlie is back in my room, sleeping on a pull out bed on my bedroom floor. This also means that we are together every second of every day except when I need to do essential shopping, and then Charlie’s older brother takes care of him. But outdoor play has increased!! And as a result I am looking at some outdoor play equipment so that I can encourage this more, I am also going to put the trampoline into the ground, so that it is ground level and we won’t need a net (also proven to be safer) and some monkey bars! I would love a good busy sensory garden that would suit Charlie’s needs and we wouldn’t ever need to leave.

Still no news yet on the appeal, I will be ringing on Monday, to see where it is and what is going on. No solid plan on when lockdown is ending, so I can’t even begin to prepare him for going back to school which will be so difficult!.

We have managed a couple of walks as well but walks are few and far between, leaving the house is so rare these days. I am considering doing either PE with Joe in the mornings out in the garden or just some basic yoga. Yoga has been proven to help children with sensory difficulties. I am looking forward to getting a bit fitter, the lockdown has been harsh on my body. And of course Charlie always benefits from sensory integration of any sort.

Stay safe everyone

Georgina x

Boom, and like a puff it all dissapeared!

This blog post was written 14/4/2020

We have had the worst few days with technology. It started with a TV that I ordered online, from a catalogue that came smashed, and I had to send back! Which was a nightmare in itself, as the call centre wasn’t open, no one replied to my email inquiry and in the end I had to go through Facebook messenger. I ended up sending the TV back, however, then it was out of stock. So we are down a TV. Next, was the phone, that ended up going to a repair man for 5 days, then the printer, and no ink, then on Easter Sunday, after I wrote the last blog post, I started to update some of the content and add some links to some sensory pages and bam! We were the victims of a hacker and I lost everything and was blocked out of all my accounts.

So with all good intentions, I had intended to do some much needed work on the website, but because of the hacking incident, I ended up not achieving that at all. And I have felt that my legs and arms have been chopped off quite honestly with no technology, I know how children feel when electronics are taken away from them in punishment. It honestly has been a rough few days in an already stressed out situation, and to make matters worse, sleep is still a serious issue in this house, and we aren’t really getting much. The paediatrician prescribed a sedative, however, Charlie recognised it as medicine straight away and refused to take it. Then I hid it in a drink, and again, Charlie wouldn’t take it so we are back to no sleep and very sleepless nights unfortunately.

The red light was ineffective, and the weighted blanket is now almost 4 years old so I’m sure doesn’t have the same effect as Charlie has changed weight and height dramatically. However, at the time the blanket cost £120 and I just don’t have that money at the moment. I will do some research though and see what we can come up with and of course share our views.

I’m having to write this blog retrospectively as it’s now Thursday, and most of life is actually back to our “normal”. The laptop, my phone, life is back. We are due to start home schooling on Monday 20th April, so I will of course update on how that goes. We have a whiteboard at home, which I put the weekly timetable up on. In the past, Charlie has had a timetable with many different moving days, and days that finish at all different time, what we have learnt, is this doesn’t work and to keep things as rigid as we possibly can. And figure out how to attach these blogs to places, it’s all a bit techy for me! It does not come naturally.

As always, stay safe!

Georgina x

Easter Sunday, thank god for Pokemon

This blog post was written on 12/4/2020

Today is Easter Sunday, and as predicted, 2 things have happened. Number one: I ran out of ink, so my appeal has come to a halt! Annoying, as it would of been so good to get this done and out the way. And Number two: There is nothing but chocolate in this house today. As expected, trying to explain to Charlie “no, you can’t have chocolate at 6.30am” is impossible! So he has gorged on chocolate and then absolutely bouncing off the walls! Thank god for Pokémon, which is the most recent obsession and episode after episode is being watched with short bursts of outdoor play on the trampoline.

I honestly don’t know how I would of managed the last 3 weeks without the trampoline, it doesn’t bare thinking about to be honest and I am so grateful for it. I think we were a little slow to the trampoline, I remember having one when my older two children were little, but this is Charlie’s first one. And we also have an indoor mini trampoline which is a lifesaver too. Now I know more about Charlie’s sensory processing difficulties. it’s a lot easier to see how a trampoline just changes his life. It is definitely a piece of equipment that we couldn’t do without.

I was very fortunate, that at the time, the children’s father was single and more than willing to help us with those sorts of things, he also built our climbing frame. Which not only is a climbing frame but has monkey bars and a pyramid that can be made into a den, that was a bargain off Facebook from Charlie’s old childminder. I’m not sure now, how I would manage, but I would definitely make it work as it is something that benefits Charlie. At the moment Charlie doesn’t see his father, and as I write this, he hasn’t been in touch for several months or even sent an Easter Egg. It’s a shame, and luckily my older two can understand and never ask any questions they accept things as they are, and Charlie is so secure with me that he rarely asks. Of course, it devastates me, I don’t know how anyone can not have the same love, dedication and commitment to the children that they are equally responsible for. I guess I’ll never know, or understand. And that’s ok, because if understanding, means I will be able to relate to them, that won’t happen because I can’t relate to them.

I’ve been in touch with a number of people, on how best to protect myself and manage this account and the work I put into it, and I’m hoping that all will become clear shortly. What I don’t want is to become a source of information and help for people, especially locally, and then just disappear because I didn’t tick boxes and cross the T’s. It is a social, moral obligation to give correct information and advice and I don’t want to be doing anything that may harm that.

For now though we are in day 1000 (jokes) of lockdown and thankfully managing with the support of pokemon and lots of sensory integration.

Looking forward to adding a lot more content.

Georgina x

Appeal dramas.

This blog post was written on 10/4/2020

The appeal is in full swing. Yesterday I managed to upload all the documents onto a folder on my laptop in order to send off to the appeal court. There were 170 pages from 23 sources and evidence that went back to 2017!! It was hard work getting it all together! But I managed it. And all was going swimmingly…. but alas nothing is ever simple in this journey. Unfortunately the documents are too large to send across via email so it looks like I am going to have to photocopy each and everyone of them. And unfortunately for me, I have very little ink left, and now I have no phone.

My charging port for my mobile has broken, and just about everything that I need to access is on the phone. It’s very frustrating. I did not see this coming and now I will be without a phone for around 4/5 days and possibly if we run out of ink it may take just as long for the ink to be delivered as it’s now Easter Bank Holiday Weekend! Honestly, could not have come at a worst time. In the middle of coronavirus as well where there are just so many extra restrictions to daily life.

I’ve seen some really positive changes in Charlie, more eager to read, learn and play outdoors at the moment. A concerning point, which I think may be anxiety is he has literally bitten off all of the skin around the thumb that he sucks. This can naturally lead to an infection, which I am very worried about as Charlie has a fear of the hospital. After a couple of really traumatic visits, which I will do another blog post on.

It will be nice to get this appeal done and out the way and I am absolutely kicking myself that I did not really understand the issues that may be part of it. Of course, I will update you further as I go, and who knows without a phone I might even get a bit more free time to finish the website and blog a bit more which will definitely be ideal so I can get the help and support information and awareness out there.

As always, stay safe

Georgina x

We are discharged from the Community Paeditrician

This blog post was written on 7/4/2020

Yesterday, I had a telephone consultation with our community paeditrican. Because of the coronavirus pandemic, they are doing all their consultations via the telephone. The best result has definitely been that the clinic letter was written within a day, never in my years of being in admin for the NHS or as a parent of a disabled child have I ever known such a quick turn around. The letter itself is fantastic in terms of support for Charlie and the issues he has with anxiety and the prospect of travelling for an hour every day for school.

However, this now means that we are now discharged from the community paeds team, which is a strange concept really as I fought so long to have Charlie’s issues acknowledged and accounted for by health professionals, that by them discharging you it kind of gives you an underwhelming feeling. It’s a little bit of limbo as to what happens next, where do we go from here, and who is there to support us. This is definitely a recurring factor in our journey, the over whelming fear of not knowing who is able to, or has to support us as Charlie has such individual high needs.

We’ve also had a change of medication to reflect the fact Charlie is in the small percentage of children that has an adverse reaction to Melatonin. Will be interesting to see how this one works and I am definitely hoping for the best solution. The GP will now review and prescribe the medication.

We have also had a referral to a charity to help support Charlie’s anxiety and mental health issues, which at times can be so emotionally draining trying to support him and his anxieties, low moods and suicidal thoughts. It’s absolutely devastating to listen to your 6/7/8 year old child talk about suicide. It’s something I never even knew was possible, and I certainly never thought I would ever have to listen to it or support one of my children through it. Some of this, is of course made difficult by the fact that my father committed suicide so these worries in me are of course magnified, possibly more than another SEN mother, which just adds to the daily battles of course.

Being out of routine is most definitely taking it’s toll! I can’t remember the last time Charlie got dressed, ate at a reasonable time i.e breakfast at 8am, lunch at 12pm, dinner at 6pm. We have absolutely no resemblance to that right now at all. Roll on routine is what I say.

Stay safe

Georgina x

The Appeal process has started!

This blog post was written on 3/4/2020

So, it’s official, we’re going to appeal, possibly tribunal and we are going to fight this placement! The wonder that is Mrs H has given me the tools and advice to help give us the best shot we can have at appealing this. The wonderful lady at SENDIASS too has been a fountain of knowledge also.

So far, I have downloaded and printed off the appeal paperwork, been in touch with Global Mediation (a necessary step) and retrieved a certificate from them and we are pretty much ready to launch the appeal. I have no idea how long it will take. But, you have 2 months from the date of the letter or 1 month from the date of the mediation certificate. Our mediation certificate was 26th March, so I have until the 26th April 2020. There is currently no way of knowing how long it will take to from appeal to the actual tribunal, if one is needed.

Luckily the school I want Charlie to be in, have a fantastic success rate for appeals and are happy to support me, which is great. Definitely, one less worry knowing that we are fully supported, as I have chosen to do this without legal representatives. It is a personal choice, I feel that our case is strong enough and that I have enough guidance to help me through this process. I do feel that I am vocal too, and I use my voice not only for Charlie but for all the SEN children that struggle and parents and carers that also find it hard to navigate through the SEN world.

I have also had a phone call off the community consultant paediatrician’s secretary to inform me we will have a telephone consultation on Monday. This will be good, we currently only see the community paediatrician every 6 months for reviews since diagnosis. And that honestly doesn’t feel as if it is enough. We have no other support from a health perspective, not CAMHS, Clinical Psychology or Occupational Therapy. We do have support off speech and language therapy, which is developed through school.

The PRU currently ring twice a week, to check up on us and ensure we’re still safe, however, I do feel that the Easter Holidays (which begins today) is possibly going to be very isolating (excuse the pun) and lonely. I have reactivated my Facebook to ensure I don’t drive myself crazy!! Speaking of social media, I am still posting, albeit sporadically, on the pages and hopeful that this site will be up and running as soon as I am able too.

It would of been nice to get the site up and running yesterday, as it was World Autism Acceptance Day, however, life has a way of getting in the way! And I was stuck on the phone gathering taxi quotes to use as evidence in the upcoming appeal. I do need an admin day, but that is hard because right now we’re just surviving day by day, doing what’s needed and figuring out stuff along the way. COVID-19 is a scary time, and I’m sure many families are like ours, just taking everything a day at a time and trying to survive. Hopefully, I’ll share some fun stuff soon, that would be nice and reassuring. But, we have got to get through a lot of hard stuff before that unfortunately.

Stay safe all

Georgina x

The website may be ready!

This blog post was written on 29/3/2020

Well, today I’m writing from a positive place! As I’ve slowly drifted back on to social media, more so because I have no motivation and determination to do any uni work. I have decided to put the finishing touches to the website. It was really important to me to get all the information down as much as I possibly could so that people could access the resources that they needed.

Right now, in the midst of COVID-19 aka Corona Virus, it’s important that people have access to free information in order to best help themselves along in this crisis. That’s important. We are already on our knees, some of us barely getting by on the days and having restless nights. No one should be making a profit out of this situation (more on the shop following) therefore, giving this website out there for people to access for free comes at the best time.

I want a launch party! Would have to be online… of course!

Georgina x

Happy lockdown birthday to me

This blog post was written 25/3/2020

Well, today is my 37th Birthday and I am celebrating it with my lovely family that actually want to destroy each other right now. We are on day 2 of a minimum 21 day lockdown and I imagine it won’t stop there. I believe that after this initial 3 weeks that we will be put on at least a further 2 weeks. Only time will tell of course, we just have to wait it out.

There have been some developments tho. Yesterday (Tuesday the 24th) I applied to the mediation service to get a mediation certificate so that I can apply for an appeal on the EHCP and the provision placement. I am told that I need the mediation certificate in order to progress. There is of course an option for mediation, however, given the track record of miss communication, and lack of communication and information between myself and the LA I have decided that mediation will not be the right path and I would like to go straight to the appeal process.

I spoke to SENDIASS this morning, SENDIASS is the governing advice body directed by the LA to ensure independent advice and information is communicated between families and LA. We have had a SENDIASS worker for just over a year a believe, and they fully support my decision to go straight to tribunal. I am being emailed the forms and supported throughout. Because of the current coronavirus pandemic means that tribunal hearings are done via telephone and video links. I would much rather be face to face, but I am being told that it is taking longer than average so hopefully the social distancing will have finished in some part by the time we get there!!

We are all suffering from a bit of cabin fever in here, it is beautiful full sunshine lots of fresh air and good weather, but unfortunately it’s not good to be in the same space for unlimited amounts of time. We end up more often than not very dysregulated and we all suffer. But we all have to do our bit to self isolate and be socially responsible and socially distance ourselves from one another in order to pass through this virus as quick as possible.

So for now, it’s a happy birthday to me, I feel the same volume of meltdowns and stress as ever, I get no break, I still have to take care of 3 children and maintain a home. It’s never a day off. However, I have cake and I’ll have some wine later just so I can celebrate, what a time to be alive.

Georgina x

Life in Corona

This blog post was written on 22/3/2020

So as my last post explained, we are choosing to be socially responsible and self isolate as much as possible to limit the spread of Corona.

You may be reading this in the future and not be able to place Corona, so just a simple explanation. It is more deadlier than the common flu, it is a pandemic, and it is happening in 2020. Over the years, I’ve been old enough and be able experience life through epidemics such as swine flu, bird flu, Ebola, Zika virus and this has been the worst. In my 37 years of life this is definitely the worst medical contagious disease and emergency I have ever lived through. Other than the financial crash of 2008, again, something that I vividly remember, being a young single mum of 2 children at University, and that wasn’t even as bad as this is now.

We have been stockpiling, not necessarily taking more than we need, but seeing stocks diminish and Charlie having such sensitive tastes and needing such particular items to live healthily, it is in our best interests to have a spare stock. For example, bath bombs and bath foam, he is sensitive too so can only use certain ones. Toothpaste is a constant battle for us, and brushing teeth is an activity that I particularly detest, as it causes a lot of battles. However, we finally found a toothpaste that he can manage and that is an Oral B one, with a picture of the pixar movie Cars on the front. So naturally, when I get it, I get around 3 months supply at once and I’ve been doing this for years. Same with cereals, other food groups, it’s always good to get plenty in just in case life takes over and you can’t get out and top up your shopping, it’s there in reserves by the plenty. However, in this crisis we are quickly running out of reserves and getting extras is now not an option as there are now solid restrictions on what you can buy. We are literally being rationed.

One very big drawback, is an average weekly shop for us used to be £60, however it is currently standing at between £90-110, and that eventually is going to have a massive impact on my income in the coming weeks. Charlie has very suddenly developed an obsession for Pokemon and Anime, so for now, he is quite happy chilling at home watching these programs. Which is quite helpful and I didn’t foresee.

So to ensure he gets rid of any excess energy, we have set up the mini trampoline in the living room. Charlie has built several obstacle courses using this trampoline and the furniture! Although, I don’t know what we’ll do if he has an accident and he needs the hospital! That will be a nightmare. Another great tip is YouTube, stick it on for some child friendly exercises, and hopefully your little one will jump in front and and join in, lead by example and get in there too!! I’ve had a few sessions to try and encourage Charlie to work out. Home schooling will be next on the list and I’m not exactly thrilled about that at all.

Georgina x

Self Isolation is a dream - how we're coping with Corona Virus, when we're not even sick..

This blog post was written on 22/3/2020

I probably haven’t written in as much depth yet as I’d like to surrounding Charlie’s habitual processes. He is a home bird, he loves being at home, and he loves being in as little clothes as possible. If we could always be at home, we would be and we would rarely venture outside if I’m honest. Home is where we’re happiest.

We are now a whole month into the corona virus outbreak and the 2nd week of the panic buying stage, first weekend of lockdown (if you’re reading this retrospectively) . It’s probably not as frightening or stressful for us as other families because being at home, self isolating is a process we have been used to for 2+ years now. The world is a scary place for an autistic child with sensory processing and to keep ourselves calm and self regulated we often just stay home rather than deal with different environments or new experiences.

And then there’s school. IF YOU HAVE AN EHCP YOU ARE CLASSED AS A VULNERABLE CHILD AND THERE IS A SCHOOL SPACE FOR YOU. It is shocking how many parents I have spoken to, that didn’t know this and thought that they couldn’t have the school place. For a while now, Charlie has struggled at the PRU, spending a great deal of time out of the classroom and in the corridor, and even outside, being aggressive when challenged and physically assaulting staff when he has been in “fight or flight” mode. Fight or flight is a reaction when needs aren’t being met and a child is in a vulnerable position and experiencing sensory overload.

They either fight, or be aggressive, as they can not control or manage their emotions. This is Charlie as he really struggles with emotions. And flight, which is where they run off. I have had many many years of Charlie’s flight modes, where he consistently ran off and hid when in sensory overload.

So, school in particular has been quite stressful as he has been in these positions a lot more than normal. And it is now a daily occurrence that we have these issues. When it was offered for Charlie to continue going to school, I did say no. Not only for the issues at school, but because his older siblings are also off, and it would be increasingly difficult to convince Charlie to go when he feels that it would be a punishment in comparison to his siblings staying home with me. Oh and we need to throw separation anxiety in there aswell! Poor kid, as if life wasn’t hard enough.

So right now, we can’t complain, we’re actually doing OK. We have food, and I suppose we just have to be inventive if we run out and make some sort of crazy concoction just to be fed. Doing the weekly food shop is tending to be a little more difficult, but not impossible, self isolation is not scary in the slightest. I must point out though, we are choosing to self isolate, and socially distance ourselves from people. We’re not sick, we have no symptoms but we are doing our bit and self isolating for the good of the community and limiting the risk of the spread by being socially responsible.

But it’s hard work for a lot of other people and I won’t take that away from them. I’m sure there’s more blogs to come.

Georgina x

Well the panel decided HH is the one......

This blog post was written on 22/3/2020

I have named the schools using just the initials, this is in order to protect both the identity and security of the schools and of Charlie, as this is a public space.

So much has happened lately! We are in the middle of the Corona virus outbreak, but more on that later! So, so far we had an Annual Review on the 9th March, there it was decided that the pupil referral unit was no longer meeting need (no surprises there) and that a different setting was needed. As you can probably guess, the LA did not turn up! Wouldn’t be the first time, as they didn’t turn up to the Annual Review last April when Charlie was being permanently excluded from a local mainstream setting after a very short stint there, under a plan. Ordinarily, if you have an EHCP, you shouldn’t even bounce back into the PRU like Charlie did. The PRU is really for assessment and redirection, where you should get the direct intensive support a child needs, when first permanently excluded and then when diagnosis/learning needs/plans are secured then the child can move onto a more specialist provision to support their learning needs. As the LA didn’t show for Charlie’s Annual Review (AR) in 2019, that meant there was no other option than for him to bounce back to the PRU.

So, 11 months later, we are now having another AR, and surprise surprise no direction or presence from the LA once again, which then meant that amendments couldn’t be made and my comments could not be taken into account.

Charlie’s case was then at panel on the 16th March, where it was decided that HH (a SEMH special school) was the provision that they would fund. I had previously emailed the caseworker, to confirm my worries on what a school as far out as Chesterfield would mean for us as a family. Especially, as I had decided that HG (an independent specialist school), which is just 10 mins away also offered a place. HG is an independent school, whereas, Holly House is a LA grant maintained school, and a whole deal cheaper, so the LA chose Holly House. What is not understood, which I would perhaps need to get costings to prove, is whether the school fees and the transport fees for HH would actually equate to the same costings as HG. As with HH we are talking about 250+ miles in taxis on the transport bill.

Yesterday (March 21st) I received Charlie’s final plan. 11 months after the last AR. This should of been received either 8 weeks (if no changes) or 20 weeks after the last review. The LA are in constant breach of SEND law in Charlie’s case, that much is evident. With the final plan came the decision on HH, and the guidance for appealing and going to tribunal. Which, is what our next steps are. I am going to appeal the decision and go to tribunal if needed to fight this case, and try and get our parental preference which is HG. It seems insane that the LA would choose to put an 8 yo with Autism, Anxiety, Sensory Processing Disorder, Challenging Behaviour and Learning Difficulties on a 50 minute minimum journey 25 miles away, when there is a school offering him a placement 5 miles away and 10 mins drive which I am volunteering to take him and pick him up from FOR FREE!!!!! And even if they were to pay my petrol it would equate to £4.50 a week!! These are crazy times, stressful and tbh uncalled for in a crisis.

Blog on corona virus coming next!!

Georgina x

The school space with Charlie's name on....

This blog post was written on 3/3/2020

So today I went to view HH (again) initially I went to view this school in May last year, and we were rejected and told the school could not meet need. There was also quite a bad Ofsted report written “requires improvement” so I was sat on the fence with that one anyway. They have a space now for Charlie. However, there are many holes in the LA idea for this placement.

1) Distance - it is over an hour’s drive in the mornings, a drive I will have to do as Charlie is unable to travel in the mornings in a taxi due to high anxiety and separation anxiety.

2) Transition - the school only goes up to Year 9. This means there will be an EHCP rewrite at Year 6 to transition to Year 7, then another one in Year 8 to transition to Year 10, depending on which pathway he will be on will ultimately depend on when it is written. We are 6 months away from Year 4 and as of yet do not have a final plan that was reviewed in April 2019.

3) Are the issues resolved from the Ofsted? We won’t find out until the next Ofsted.

4) They need to review the newest plan to agree to meet need. There are things on the old plan that they can’t meet.

5) They work on a reward and consequence system. That doesn’t always work with Charlie and can lead to him having a meltdown when he doesn’t fully understand the consequences.

So as you can see, I have some big reservations regarding this placement. I’m still holding out for HG, (an independent specialist school) and I’m yet to hear back from Linnet regarding their Ashby site as that may be suitable for him. However, their site in Castle Gresley is definitely not suitable for him. And then the Roaches, which was a school I saw up in Staffordshire near Leek right in the Peak District, they have a new school opening in either Beeston or Breaston. I’m not sure which! Either way it’s a lot closer..

I’m still on the social media ban. And it’s going really well, I’m feeling very detoxed from it, and I like where my head space is at. Once, my University course is complete, or as close to and the pressure is off then I will most definitely be back on the social media grid. But probably just in this capacity rather than my personal pages.

I’m always working on stuff in the background so I’m hopeful this site will be up and launched soon!! Especially when I’ve piled together enough FREE resources and information so that we’re able to help people in the capacity that I want to. The aim of this site was always to be a self referral information site so people can dip in and out to the bits that they feel will be most helpful to them.

Looking forward to be back in the swing of things!

Georgina x

We survived Alton Towers... Just!

This blog post was written on 20/2/2020

Well, it’s half term. And there’s quite a lot to say! The Friday that the kids broke up, we had an assessment with HG with their clinical psychologist. They need now to go back to their referral and admission team and get back to me on an answer. I have had a reply of the LA from their response to the complaint I made on the progress of Charlie’s case and although they have apologised, and admitted fault, they still have some work to do in my opinion before they get it right. I am seeing HH again on the 24th February and have tried to contact Linnet Learning Centre to arrange a visit to their Ashby site.

So anyway, Alton Towers! I found this incredible deal online for half term. It was only £170 for the 4 of us (me, Charlie, his brother and his sister) and that was a night in the hotel, shark bait reef (sea life centre), extraordinary golf, admission to the waterpark (normally £62 for us all) breakfast, and all the entertainment. It was worth the money. However, very tiring for the little man. We didn’t manage to finish the golf. And we didn’t do any of the entertainment. But a place like Alton Towers is such a secure environment that the older kids were able to take themselves off especially when the meltdowns occurred. Also, if they wanted to watch the entertainment (unfortunately we chose the Princess takeover hotel, so they didn’t want to) they were able to wander freely around the hotels. Which was a great way of removing themselves from the environment if things got too tough for Charlie.

The waterpark was definitely the best part. Charlie loves the water, it’s a sensory thing. And it really is one of his favourite pastimes and his happy place for sure. And I’m so thankful that we have it so close, and that now we are able to jump in the car and just go! I’ve been driving less than a year, and activities like this is definitely worth all the stress of learning to drive. As it makes opportunities like this so much easier! I’ve learnt over the years, to follow Charlie’s lead on things like holidays, days out etc. His siblings don’t always understand and appreciate it. But it is in all of our interests if we follow a Charlie led trip as it does really make a difference.

I will do more blogs around holidays and days out, because I feel like it is important and that it may give some other families hope, confidence, support and guidance at doing trips like ours and hopefully to be more successful around it. As that is what is important that we give children, and adults with additional needs all the chances of becoming inclusive as we can.

Will definitely consider Alton Towers again, and hopefully when there is an inset day we may pop over there for the theme park. As it is always a much better experience when it’s quieter and we don’t need to queue as long. We went to Drayton Manor a couple of summers ago and it was an absolute nightmare! Never again in the holidays.

It is great though that more theme parks and attractions have so much accessibility and can adapt to the needs of people with additional needs and need a different level of service. Hopefully the rest of our half term will be just as good.

Georgina x

Social Media Detox

This blog post was written on 10/2/2020

I am using the initials of the schools in order to protect the identity and security for both Charlie and the school’s as this is a public space.

I’m currently taking some time off social media, sometimes it can magnify problems that actually, are manageable but seem overwhelming. So it seems a great idea right now, as we have so much going on to give social media a bit of a breather, and hopefully then when I am back I’ll have more of a positive take on things.

As for updates, we have an assessment with HG school on the 14th February, that is to see the Clinical Psychologist. That is their first steps to offering a placement, a series of assessments. I went to view the school in November, loved it! Wanted to cry on the walk around, was there for 3.5 hours! So asked plenty of questions. Then they offered an assessment date in January however, Charlie was due to go on a residential trip overnight to Lea Green, so I had to cancel it. Then, the trip was an absolute nightmare, he lasted half a day before I was called to go and pick him up!!!

It’s been the longest 3 weeks, waiting for a new assessment date, but I’m happy to say it will be the 14th and we will go from there. I am also seeing HH again on the 24th February, so that I can ask them details of the current Ofsted report. And also, the other school Linnet Learning Centre, I’d actually need to go and see their new building in Ashby which is where Charlie would go.

There’s always so much more to organise, when it comes to viewing schools, checking the Ofsted, viewing the teaching methods, whether it’s a way Charlie will learn, checking the space. Finding out about their restraint policy, and their rewards and sanctions policies. So far, HG has come out on top with everything, it is everything I’ve ever wanted in a school for Charlie.

We still have a very long way to go, more battles, and social media is a massive distraction I can definitely do without.

Georgina x

We have a name change!

This blog post was written on 6/2/2020

As I’m aware that this page may throw itself out in the public domain, as I hope it does!! I didn’t want anything that may damage Charlie’s already fragile self esteem. I think the previous name was a little bit personal and focused on him as a person, rather than the message I am trying to put across.

That message is Advocating. I am advocating for Charlie, but not only Charlie, for everyone that doesn’t have a voice and needs a voice. I’m advocating because I know how to use a social network platform in the correct way, and I’m advocating for the hundreds of families out there like mine that need to hear it, to empower them.

I’m pretty happy with this change. It’s a positive change.

Georgina x

So the LA may have suggested a school..... Hold on tight....

This blog post was written on 6/2/2020

So, as the battle continues to get Charlie an education provision, and the extreme length of time this has taken to implement things may actually be moving. On Tuesday, after not receiving a reply from the complaint I put in the week before (apparently they have 10 days to respond which will be this Friday, tomorrow) I sent quite a strongly worded email with a 4 page document outlining the principles I feel have been neglected from the SEND Code of Practice.

Low and behold, the caseworker emailed me yesterday offering a school place at a school I had previously visited last May, 2019. The school had previously suggested that they couldn’t meet need, and this is going on an old plan that didn’t have the magic touch of Mrs H. So I will be interested to know whether or not they are still able to meet need should the new plan be unveiled. This school was also put into special measures as “requires improvement” on their last Ofsted visit. My ultimate piece of advice is to always check the latest Ofsted report on the school.

Our local LA have policies in place to prevent a child going to a setting that is currently in special measures, so it will be also interesting to find out what was said at the panel meeting as I’m not too sure it fits into their policy remit to send a child there.

This school is also an hour’s drive away, so over the threshold of the LA’s recommendation of 45 minutes drive away, Charlie doesn’t access the transport provided as the anxiety levels are too high for him to travel with a stranger, therefore it is on me to transport him every day. Although the school offers residential placements, it is not appropriate for Charlie as he would not cope with the separation anxieties that come with sleeping away from home. I challenge anyone to attempt to make Charlie sleep elsewhere, it won’t happen the child is too attached to me haha!

The school also only goes up to age 13, year group 9 so after that we have to start this whole process all over again. Which I’m definitely not thrilled about. However, by then I’m hoping I will have had 5 more years of experience, knowledge and attending various information courses in order to make sure I can fight that battle too.

There are definitely more cons than pros for this school, however, as promised I will go and view the school in order to challenge the points I need.

I will keep you posted!!

Georgina x

Who needs sleep anyway?

This blog post was written on 5/2/2020

Tonight we are trialling the Red Light! One of the first early indicators that there was something different about Charlie was the sleep. He was exclusively breastfed, (the only one of three that did) which ultimately meant that he was attached to me day and night quite literally. He was weaned at 6.5 months, no magic advise I’m afraid, just a tired momma that went on a night out and the next day knew I couldn’t feed! And he literally just weaned. Anyway, he slept in bed with me until he was around 4.5 years old, trying to settle him on his own was a nightmare, and if I’m honest there was no real need for him to sleep in his own bed. (This was partly due to space as well, we had a tough living arrangement for a while when the children’s father left).

Anyway, school was soon approaching, so I began the necessary moves to ensure independent sleeping. This was HORRIFIC!! No matter how hard I tried, Charlie would not settle on his own, he was up and down, and there was numerous excuses, he needed to touch me at every opportunity, He needed the physical touch, he was exhausting. Bedtime would start at 8pm and would not finish until perhaps 11pm or midnight, it was hours of the “settling” period. And if I thought once he was asleep, I could go to sleep, I was wrong! He then woke, continuously throughout the night, desperately needing to touch/be near me.

I was working for the NHS at the time, doing a role which meant working from 8am until 6pm throughout the week, it was extremely exhausting trying to manage that and get the kids up and out the house, with having little or no sleep, and whatever sleep there was it was broken and not of any good quality.

We battled on, trying various different strategies, bedtime routines and implementing therapies to get him to settle. None have been groundbreaking unfortunately. Although, ones that have stuck have been making sure the toilet has been used, a drink of milk before bed, limit of electronics by having a family card game before bed. This is either Uno or Top Trumps which work for us. Bedtime is always 8pm.

Once he was diagnosed, we were prescribed melatonin, however, Charlie being Charlie was the 1 out of 100 that developed frightening side effects, this being nightmares and hallucinations so we were unable to continue on the prescription as I would much rather suffer than Charlie experience that. And, I gave up my career to become his full time carer anyway.

In December 2019 I was fortunate enough to go on a Positive Sleep Habits course with the Clinical Psychologist from the Children’s Hospital at Royal Derby Hospital. DISCLAIMER: I am not a professional, always seek professional advice when changing your child’s care plan. I was lucky enough to go as a plus one, with Miss S (if you have read previous blogs, Miss S is one of the guardian angels). There were a few hints and tips that they gave us that I will share with you now.

• Use a weighted blanket - this is only effective for the first 20 minutes.

• Switch to a red light in the bedroom.

• Limit screen time, 2 hours before bed.

• If there is a blue light filter on the electronics, switch it on.

• Talk to your child about their day - give them chance to tell you of any struggles/worries they have

• Use relaxation and yoga

• Eat a tryptophan rich diet - These are foods that contain melatonin so the body is getting it in the day.

• Tart Cherry Juice 200mls, available from Holland and Barrett.

We have yet to try the foods and cherry juice, and unfortunately for us limiting screen time is never easy. However, we have the weighted blanket, regularly talk about our days, always chat about any concerns and definitely do the yoga!

These strategies may not work for everyone. It is important to seek professional advice if you have any concerns, There are lots of books and resources available also. Changing old habits and introducing new ones is always tough, so please don’t give up even if you give in.

Georgina x

There are angels that walk among us.

This blog post was written on 4/2/2020

An EHCP (Education and Healthcare Plan) is there to assist your SEN child through childhood with the correct services and provision in order to safeguard them and hope that they achieve their full potential. It is written by using the guidelines of the SEND Code of Practice, a 292 page document with principles that all services working with SEN children should adhere to. Tonight I took apart the 292 pages, bit by bit and wrote a 4 page long complaint outlining each and every principle that I personally feel has failed Charlie. Whether it be health or education.

The EHCP has been in draft version for around 10 months now, and is not legal. The legalities come from the legal framework within Children and Families Act 2014, which then makes up the guidelines given to the SEND Code of Practice.

I knew nothing about the legalities of SEND caselaw and just bumbled around with this shockingly written EHCP which was neither quantified or specified, and just accepted it. Then the angels appeared. 2 lovely ladies by the names of Mrs H and Miss S and between them, they have opened up dialogues to conversations that I never thought I could have, therapies that I didn’t even realise we were allowed, a plan that I didn’t even know could of existed. And above all protection for a provision for my darling boy who needs more than anything the right educational setting and provision to enable him to live a life as assessable as he can. There should be no barriers to learning and there should be support networks to avert a crisis from happening.

For Mrs H and Miss S I am eternally grateful as without them, I would definitely not continued to fight for as long as I have, each and every time I was almost at the point of giving up, in they came and picked me up and supported me to continue to fight, and for that I am truly grateful.

I hope you both read this one day and realise how special you are.

Georgina x

Schools, Schools, Schools.........

This blog post was written on 3/2/2020

Today, I went to visit a therapeutic school. It is so far, perhaps the 17th school I have visited. I have been all over Derby City, Derbyshire, Staffordshire, Nottinghamshire and Leicestershire in a bid to secure Charlie a placement that will suit his individual learning needs. It’s been exhausting, mentally draining, and the list of schools where I have spoken to SENCO and the heads of the schools is even longer! Our journey to get the right school placement has definitely taken it’s toll and it honestly shouldn't be that hard. I’ve now got to the stage where I’ve forgotten which school have said yes/no and their reasons why. Which has to be the most crucial bit, knowing why they feel they can not meet the needs of a child like Charlie.

At present, there are 2 schools in the pipeline, both independent schools, both with a price tag of over £70k a year, does my child need this? Yes! How do I know? Evidence! We didn’t get to this point without a lot of trial and error, and a lot of investigating. However, I feel like I’m battling a brick wall at the moment.

This list of schools is endless, and I have seen all schools, from Mainstream schools with Enhanced Resource Units, Special Schools, Schools for Autism and Independent Specialist Schools. And so far, not one has said they are able to meet my little boy’s needs. I have got a spreadsheet of all the schools and alternative provisions I have identified myself, I am happy to pass this along, please get in touch.

I will keep you updated on our struggles.

Georgina x