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

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