Courses, courses, courses.

I have been super busy lately taking some courses both for personal development and continued professional development.

In my role at work I mentor lots of young people and many of them have additional needs. The young people are often neurodiverse and have a level of SEN needs. So I took a course specifically for SEND, special educational needs and disability. It was really informative and I learnt lots around the legislation and case law. This drove me to look at SEND case law levels 1, 2 and 3 which is delivered by IPSEA. Before doing that I am taking part in a training day on Wednesday (15th December) on EHCPs. I am really looking forward to learning the knowledge more in depth on how EHCPs are written and how to use case law in them.

And if that wasn’t enough…. The last two weeks I have been taking part in training sessions delivered by the PDA society. The PDA society stands for pathological demand avoidance. Charlie has a diagnosis of autism with a demand avoidance profile. And that's how close we're going to get to PDA as it's not recognised or accepted in our home LA. But demand avoidance profile is… go figure?! Learning more about how Charlie sees the world is always going to be beneficial to anyone who comes into contact with Charlie. So any knowledge I can gain and pass on is just so crucial to help navigate Charlie through his life and support him the best way possible.

Georgina x

I got it wrong.

Sometimes, as parents and carers we get things wrong. I started this page advocating for Charlie on social media through Facebook first. Facebook has a small number of followers, and my engagement on there is quite low I think. Some time ago, well over a year, I started an Instagram account. The following grew pretty quick, and with it access to accounts that I would not of known if I had stayed on Facebook only.

There was a large portion of SEN and disability accounts. And one in particular I followed religiously. She had a complex medical child, was a single parent, slightly younger than myself and local. I thought we would have a bit in common so I started following her journey with her child. The journey was difficult and she was up against so many barriers, it was devastating to see but I could relate as that was exactly what was happening with us. And as she was local to me, I could relate all the more.

I’m not sure when the switch happened that she stopped being so much the SEN advocate but turned into a bit of a mumfluencer? I think that is what they are called? Her page turned into advert on top of advert, and for a while I was mesmerised. Here, was this struggling single mother, no help from the father, no help from the family (exactly like myself) battling on with her child and using Instagram to her advantage. And the ads and work just came rolling in! I thought great! I could do that. I could turn this into a money making venture, earn money through ads, open a shop, develop a brand. I really got washed away with it all. It is important to note, it wasn’t only this person - there were several. Several, Instagrammers that were gaining followers and income from their accounts. And I was, ashamed to say it now, in awe! I felt as this would be the answer to our prayers. It would enable me to earn an income while being home with Charlie. Dream come true right?

However, I was pointed in the direction of a gossip site should I say? Not really sure how to word it. It was a place on the internet where people could express their opinions and views on said influencers, Instagrammers etc.. There are literally hundreds of people doing this. Perhaps even thousands. These comments were not about the majority they are about the small minority of people that take this lifestyle and use it at their child’s expense or use it incorrectly. And that is what the website looks at primarily.

So, upon stumbling onto said gossip site, I found the local SEN mum had a thread written on her. Actually, it wasn’t just one.. it was several. And as I read through them I was totally shocked. This image of her that she had portrayed on Instagram was false. Not only did she have her family supporting her, but she had the child’s father co-parenting with her. And her son was in full time school. As well as several other agencies supporting them as a family too. Her life did not mirror mine, we were not similar. Our struggles were not the same. The other information that I uncovered was the way the child was exploited due to ads and as a way of gaining income and I had never thought of that. I had never dreamed of sharing Charlie in these ads, but perhaps that was the process to get them? There was no safeguarding measures. There was no consent from the child (non verbal) and now when I think of it, I am shocked that I even entertained the idea.

I have now unfollowed said SEN mum. And I feel all the better for it. Using funds given to your child inappropriately is not ok. Using your child to exploit in order to gain followers and income from ads is not ok. Lying about your lifestyle and family situation to trick your followers is not ok. And I am sad that I got it so wrong and put this lady on a pedestal when all she was was after her own gain. This is the dark site of social media, the dark side of influencing, the dark side of Instagram. I am sorry I got it wrong. I will not be following in these footsteps and turning our account into a marketing tool. Ever.

Georgina x

Autumn catch up.

Well, where do I begin? We are on par to receive funding for EOTAS. It has been agreed in principle with the head of SEND at the LA. We are definitely pushing forward as I see such a change in Charlie when he is home with me, and not under any pressure to attend education. It really does take the anxiety out of it. His previous placement was fantastic, and I have no doubt that for other children, the placement really is the best it can be for them. However, Charlie has had so much school trauma, the anxiety is so high for him it just simply isn’t an option to keep putting him through the distress of school when it’s so unproductive.

So far, we have been doing what is known as “unschooling” this is the process of removing all the learnt behaviours of being in an educational setting. i.e. break times, lunch times, moving from lesson to lesson, having set subjects. Unschooling is child led and follows children’s interests and promotes education in that way. You can learn more about unschooling and the origin of it here:

Urban Dictionary: unschooling

John Holt GWS - The Foundations of Unschooling

It is counter productive putting Charlie into a school like setting and expecting him to learn. Over the past 5 years we have got nowhere with this method so it is definitely worth a change up!. So doing a mix of child led learning and therapies from speech and language and occupational therapy is definitely going to be our next step. I will be sharing our journey with you as it happens.

Short Breaks.

Unfortunately, Charlie not being in his placement means that we have lost his Personal Assistant which was funded by short breaks. This is frustrating, because although we have been allocated hours and time, we are unable to access them. And this can be a worry, as I do not want to lose out on the support that he has been awarded. Where we go from here I do not know.

Anxiety

I have been asking for a referral to help Charlie with his anxiety for several months, perhaps as far back as April! We are no closer in this part of our journey. Community Paeds say he needs Clinical Psychology (CP) CP says that there is one attached to the school and we should be accessing that one. the school say that there is only 1 CP available and Charlie is currently on a waiting list to access. Nothing has been taken into account that should we leave the provision, where the support for Charlie will then come from. I hate to say it, but I feel as though we are being pushed into going private! Support is lacking immensely and it just isn’t fit for person. When we say it costs 4 times more to raise a child on disability, these are the costs we incur. Private therapies and interventions because we so desperately need the support to be able to parent/care for a child that is so complex.

I apologise for being so absent recently. There have been a number of curve balls that have been thrown my way. The first was a car crash! No one was hurt, but my car was completely written off and now I am without one. My course, I have just finished the level 2 Special Educational Needs and Disability course with the Skills Network. It was a fantastic course, with lots of research and resources that I enjoyed accessing however, it was such a quick turnaround on the modules and assessments (8 weeks to do 5 modules) which meant I did struggle with the time constraint.

My own mental health, I will cover more of that in the next post. But I have struggled with a few bits myself and I do feel now I am coming through it on the other end. December 26th is always a great day in my house because I have successfully completed another year of parenting single handedly and the children have had birthdays and Christmas and we are out the other side.

Universal Credit.

And finally, another life change that has been weighing on my mind and stopping me from being at peace in my mind is the dreaded change to Universal credit. I am heavily reliant on benefits due to the family circumstances that we have. I have had a number of changes to my household circumstances in September, and as a result decided to change over. I was not expected to change over, but because of the different changes involved, I thought it was best to change over. I will definitely try and keep everyone up to date on that progress, as there are many families in my financial situation that will benefit from this.

Looking forward to being back online more!

Georgina x

Charlie is 10!

Charlie is finally double digits! He has been waiting for this day forever. I am not sure what was the excitement over this but I do know that he was excited. But why, I am not sure. It was a very low key event, as it mostly is with Charlie as he does not like surprises, or fuss, or birthdays! In general, however, he has wanted to go scuba diving since he was 7 years old and now that he is 10 he is able to start lessons which is fantastic and everything he always wanted. So he got both lessons and a wet suit, and we are all ready to begin on the 11th November.

Of course, Charlie got lots of Playstation games and a new remote control. Unfortunately, he has a habit of launching the remotes in a way of expressing his feelings (mostly rage) as he is unable to communicate and effectively manage them. Because of this we go through A LOT of console remotes, so this year I have gone that little bit further and insured it!!! The insurance is 2 years but there’s absolutely no way it will last even 6 months, so as long as I get one new remote out of the insurance policy it will pay for itself. And I am happy with that.

For those of you that are new to following us, you may not know that Charlie shares a birthday with his older brother. His birthday is also the day after Halloween so as you can imagine it’s quite hectic here. You can read more about Charlie’s birthday here:

Birth story — Advocating For Charlie

That, with the fact that it is also always half term! So again, half term being the absolute worst of the school holidays as it takes so long for Charlie to transition, between the changes of environment to boom few days later and back to normal term time again. Starting to realise the benefits of home schooling means that these transitions are not forced and not time sensitive. Which for us is such a bonus. When most schools were going back on Monday, we were celebrating Charlie’s birthday. This spilled over to Tuesday, then on Wednesday we did one hour of learning and today we have done the whole morning! And that is crucial to Charlie’s mental health.

So, we are long overdue a catch up! I will continue this in the next blog.

Georgina x

What a week! Thank you for the weekend.

At the start of this week I had a real clear direction on life and Charlie’s education. I believed the only way forward was to work on our EOTAS plan. EOTAS is Education Other Than At School, so it’s effectively a mix of community and home learning but is paid out of the LA’s budget. And I had started the planning for it. Emailing local occupational therapists, educational psychologists and Speech and language therapists for costs and to find out what I would need to put this plan into action.

It’s actually been quite time consuming and labour intensive, that and the fact I am currently doing an online course in Special Educational Needs and Disability. And we have started home learning. Every day, Charlie has engaged in some form of learning with me. It is all based off YouTube at the moment, but any education is better than no education and I really thought this would be our step forward. This was now the education plan. On Wednesday, Charlie’s school got in touch with me to give me a proposed timetable for the term for him to come back. On Thursday, he had horse riding, horse riding has always been the key to getting Charlie back into school.

So on Thursday, I literally said “we’re going horse riding at 12.30pm”. He asked Alexa to set an alarm and got ready with me to go! Shocked was not the word. He loved horse riding, rode independently and even did some exercises on the horse, what an improvement. His favourite teacher met him there and asked him if he wanted to come into school to see his classmates and tell them about his summer. Charlie said yes! And he went! I am honestly in so much shock, what a turnaround! Fantastic effort from them all, school, Charlie and his classmates. We were on a high. After almost 4 months out of school Charlie has gone back. We still have a long way to go but it is definitely a step in the right direction. Everything looked perfect. On Friday the plan was that we would meet his classmates at a local park.

Unfortunately, someone drove into my car and damaged it so it was undriveable The insurance is now invalid and I am waiting to see if it is completely written off. So our return to school was killed off. I have no car, and getting to the park would of taken 2 buses and that is just not possible for Charlie. And so without a car, life will be even more difficult and we will be even more isolated not to mention the difficulties it will take to get Charlie to school. What a disaster. All day Friday was spent trying to get evidence and filling out forms for the insurance and the police. The man that drove into me, drove off. Luckily there are witnesses but it is all time consuming and definitely not what I need right now. You can go from feeling on top of the world to back down in 24 hours, and this has been a very cruel realisation of that. We will see what next week brings, but for now, I am glad it’s the weekend.

Take care

Georgina x

Eotas here we come.

It’s no surprise that Charlie is struggling with school again, and in this holiday I’ve seen a positive change in him, with no school based anxiety. It’s nice to have my happy caring Charlie back and I love to see that. I have had a couple of opportunities to discuss school with him and he has got very withdrawn and become selectively mute and refusing to speak to me regarding school. When I did finally get him to open up about school he became very distressed and did not want to go back, he was very scared at the prospect. Deep down that’s all anxiety is, fear. Fear of the unknown, fear of the known and fear of what may become.

So now I have started to delve deeper into the realms of EOTAS. The letters stand for Education Other Than At School and that is exactly what it will be. Education that is delivered by the LA, provided by the LA, but not in an educational setting such as a school environment. I have included an article detailing the process below:

Education outside of school | Department of Education (education-ni.gov.uk)

Guidance for education otherwise than at school | Department of Education (education-ni.gov.uk)

Unfortunately our LA has not had much dealings with EOTAS so are not quite equipped to handle the process. This now means I will have to research all elements of education required, dissect the EHCP to address the outcomes and fit it in the plan for EOTAS and work out all the costings. As we all know, it’s always about budget. And I will have to prove that Charlie’s EOTAS plan will not only meet the outcomes but cost less than his current placement. Once again, more life admin that takes me away from my primary role as mother! And just intensifies the fact that working for an employer is so difficult whilst juggling these demands and trying to balance Charlie’s needs with life. It is not compatible.

I have another exciting project in the pipeline! I can’t wait to share it with you all. Fingers crossed I will be able to get it organised by the beginning of September and before the children go back to school and when meetings ect will resume. It will be a lit of hard work but if it means that I will be able to work from home more then it will definitely be worth it. The aim will always be to get an income that is sustainable and financially viable that works around the children and means my only demand is from the children’s lives. That would be a dream and I hope I achieve it.

For now though, EOTAS planning will take up the majority of my time as I need it to be built and in place before the next annual review and hopefully we will not need to go to tribunal court, however, I am fully prepared for that battle this time around.

Stay well all.

Georgina x

Sensory Swimming.

Today we got to experience sensory swimming at a purpose built pool in Derby. It’s the first time we had ever been and I was seriously impressed. It was a wonderful experience. It was put on by a local group:

Tegan's Butterflies In Paradise | Parents Supporting Each Other (tegansbutterflies.org)

And was based at:

Aquathlete Ltd | Facebook

They have a Facebook page but no website I’m afraid. We went in the hydro pool which had an underwater treadmill, hydro jets, a wave machine and sensory lights. And we had the best time! It was a lovely temperature and we were the only family in the pool for our session. We will 100% attend again if the opportunity arises. And if you are close to Derby, it really is worth checking in as it was so fun. I have spoken before about the benefits of hydrotherapy. And for my Charlie it really does have it’s benefits.

We’re at the end of week 2 of the 6 week summer holidays. And so far haven’t done a lot. This time of year is terrible, everywhere is so busy, and days are really long with very little structure. However, there is some joy. My friend is coming to stay with us for the remainder of the summer, this means I will have an additional pair of hands to help, and some adult company. That will be bliss. It is really great to share the responsibility at times with another adult. We also hope to make swimming a twice weekly experience!

Enjoy the summer as much as you can.

Georgina x

Email requests and resources.

I can’t tell you how much it fills my heart when people message the page to tell me that they have found a resource and would like to share it with the followers on these pages. I really do welcome any resources that people find to pass on. As every bit of information no matter how big or small is important to someone and may just improve the lives of someone.

I want to build a community and a resource hub which means you don’t have to go searching for the information yourself. When a child is first diagnosed it is so overwhelming and as parents I think it really takes us time to adapt too. So if you come across something that you feel will help someone else in this community please share it. Either on the social media pages or email me and I will gladly share it.

Advocating for Charlie (@advocatingforcharlie) • Instagram photos and videos

Advocating For Charlie (facebook.com)

One of our blog readers read one of my previous blogs and found a resource that they thought would fit well so emailed me and asked me to share it. I think it deserves a space of it’s own but does follow in some of the other blogs to do with internet safety. As you may know I am a huge advocate for internet safety for vulnerable and disabled children.

You can read it here

A Helpful Online Safety Guide for People With Autism Spectrum Disorders (wizcase.com)

Thanks to the follower that pointed me in the direction of this guide.

I am picking up extra shifts and have some day trips planned for summer so hopefully i’ll be back on your screens soon with some positive updates.

Hope you’re all enjoying the summer so far!!

Georgina x

School's out for summer. Officially

Today is the first day of the summer holidays. However, if you have followed us for a while you will know Charlie has not been to school for several weeks. I’m currently trying to put a schedule together to give us some structure over the holidays as Charlie becomes very dysregulated when he has no structure in his life. This is a double ended sword as the same structure also gives him anxiety.

Charlie has sensory processing disorder and a spiky profile which means he is incredibly difficult to read at times. This weather is definitely not helping at all. Nights are long and stressful and mornings are early. Together with the battle to improve Charlie’s attendance at school means that life has been more challenging than normal. I have been a bit absent recently, as Charlie’s issues and my mental health hasn’t been great either.

Today I had a mental health assessment and I am hoping with some extra support I can move my mindset around our current situation and start focusing on Charlie’s needs a bit more. Here’s Hoping! There’s been a lot of sadness lately and I really do want to start feeling happier and more positive around our future. I know I should of been more present on social media, but it is difficult to be happy when things aren’t happy.

Monday should be my graduation and although I had previously looked forward to it, now it no longer has the same appeal. Any thought of leaving Charlie and especially one that means staying overnight away from home is difficult for both me and him and will mean prolonged emotional turmoil for Charlie. I am not a fan.

I feel at the moment that we go one step forward and 10 steps back and it is very difficult to keep on top of feeling positive and engaged and that is really sad, it is really sad that life is so difficult right now and I wish it was better. I am hopeful that with some counselling we can change this.

The sun is not helping. Summer is the worst season for us, it is so difficult to manage Charlie’s behaviour and emotions when he becomes so dysregulated. Wish me luck for the summer!!

Take care in this heat.

Georgina x

Co parenting at it's finest.

I have the weekend off. Well sort of, it hasn’t quite worked out like the whole weekend but it’s close and I will be taking one child with me! So not sure if that’s the weekend off exactly but it certainly is from a ‘unpaid carer” point of view.

One of my friends is getting married today, and it’s all the way up in the lake district which is around 3hours drive. Like I said, i’ll be taking one of my children, my daughter and it’s her best friend's mum that's getting married. I asked Charlie and he was very firm with the point that he didn't want to do the drive and thought he would be “bored” at the wedding. Sitting still is not a skill he has! And I agree I think he would struggle. We're staying over as it's such a far way. So the night off will feel great as will the 1:1 time I get with my daughter.

The plan was to come home Sunday. But then I was invited to Alton Towers Monday with friends I haven't seen for over 2 years. And I didn’t want to miss out on the opportunity! After some careful discussion with Dad, around what was best for Charlie we decided that not coming home Sunday was the best solution.

So I have Sunday night off!! I honestly can’t believe it. Just me, on my own. No plans, no pressures, no places to go or people to see. Just uninterrupted time on my own! I honestly can't remember the last time that happened. But I think it must be at least 2 years ago.

Don't get me wrong, Co parenting is still one of my hardest struggles. Charlie is so complex and it's hard to parent him without having to take on another person's views and schedule too.

However, Co parenting is at it's finest this weekend and it’s allowing me quality time on my own, with my daughter, and with my friends and for that I am forever grateful.

Have a good weekend everyone.

Georgina x

Maternal Mental Health

The last 2 weeks have been an emotional rollercoaster. I started to struggle some time ago, probably around a month. I removed myself away from the socials and hoped I could focus on getting better. I thought that it must be carer’s burnout because Charlie’s needs had been so full on lately. And that once we were over this EHCP and DLA stage that I would start to feel better.

But it wasn’t. We achieved the DLA renewal and Charlie got the same rate of care and added mobility. We also got more provision added to the EHCP and more assessments and support, so it was a victory. All that stress and worry. But it wasn’t that either. Then I realised it had nothing to do with Charlie and being his full time carer. It had everything to do with the pressures I feel as a mother.

Evidence shows that mothers that suffer from poor maternal mental health are at greater risk of impacting their children. The link below shows how it can impact, and what factors contribute to maternal mental health.

Maternal mental health: how does it impact on children and young people? - Education Policy Institute (epi.org.uk)

It’s easy to see why I have started to struggle, the pressure of raising a family alone. The poverty that comes from a single parent household and from being excluded from the workplace due to having a child with disabilities. I’m not ashamed to admit I have struggled at the thought of being Charlie’s full time carer, and giving up my career. I’ve slowly come to terms with the fact I will never do the job I love, or go into a career that I worked so hard to get qualified for. But the best way to overcome this was in fact to not only accept it but to accept help. Last week I rang the doctors and I was put on a new anti depressant and referred for talking therapies.

Talking therapies will give me the time and space to process these thoughts and feelings so I can accept them more easily. And the anti depressants will help lift my mood until then. I have posted a link on talking therapies below.

NHS talking therapies - NHS (www.nhs.uk)

And finally, I became me again. The issue with maternal mental health it’s all based around your role as “mum/mummy” and you can get lost. The “you” can become lost and that is exactly what has happened. All my energy, time and effort has gone into the children for longer than I can remember, and little pieces of me had begun to drop off and they were never replaced and I never picked them back up again. And in the end I was just “mum”.

So this week I have taken some huge steps to feel more of a person. I went to a hair salon for the first time in 5 years and got my hair done and I also had my eyebrows tinted and waxed and fake lashes put on. And it really has made me feel so much better about myself. It may be another 5 years until I go back to the hair salon and I may never have my eyelashes done again. So for now I will enjoy it and feel a bit more positive, ready to take on new battles and face a different future to what I ever imagined.

Georgina x

Bumps in the road

Well they told me there would be bumps in the road, but I could not, did not, imagine this. There has been no school for Charlie for one week now and I really don’t know how I’m going to manage to get him back in again. What do I do? How can I make this better? I am at a total loss.

The attendance started to dip before half term really, there were changes in the classroom that rocked him and that meant that keeping to a routine was hard work. Obviously 9 days off is always going to give me some challenges, but surprisingly after half term Charlie just smashed his first day back. I really am not sure how that happened. It gave me new hopes and I started to dream. But then that hope was short lived as Charlie struggled to maintain that enthusiasm for school.

Then there was an incident at school involving another child and Charlie has completely reverted back to non attendance and school refusal. What always worries me the most, is not just the education that he misses out on, but the social interaction, the social development and thinking sessions he has with his speech and language therapist. His sessions with his occupational therapist, his swimming lessons and his horse riding lessons. He honestly has such a great opportunity for school but the dreaded anxiety just won’t let him be him. Anxiety won’t give my boy a chance. And I don’t know what to do.

Should we refer back to the community paeds for anxiety meds? Do talking therapies (even though he doesn’t engage with strangers) or maybe just ride it out until the anxiety settled. It’s hard to know what the right move is when you are not medically trained and don’t feel equipped to look after your child. It is a horrid place to have these feelings.

I hope it gets better and Charlie feels secure enough to go back to school soon.

Georgina x

Back to school - Half term is really not long enough for transition

I absolutely hate half terms. Out of all the school holidays, this has got to be the worst. One week is just not long enough. Charlie only just gets through his transition period when he is hit by going back to school and transitioning back into school life.

In true Charlie fashion, I am really not sure why this happens. But, the first day back is almost always positive and he thrives off the excitement of going back. However, that excitement soon changes to anxiety and then the struggles begin. Tuesday was difficult and Charlie struggles to go in, and ended up running off and trying to find me at the fence. It was heartbreaking, like something you see in a movie, horrific. Watching him with great big tears falling down his eyes.

Yesterday was even more traumatic and after over half an hour of trying to coax Charlie through the gates of school, he continued to run off. As we drove away, he actually opened the car door while it was still moving and jumped out and ran off. It was terrifying. Not only that, but I thought these days were over I honestly thought we wouldn’t go through this again as I thought it was behind us. It is devastating to know Charlie still struggles so bad that he feels it necessary to run away and does not sense the danger.

We took yesterday off school, and Charlie went out with his dad for a couple of hours so I could do some work. He was so dysregulated and he really needed to be out the house. I also had a meeting to attend, virtually which of course is difficult when Charlie is in the house. I always end up with dread thinking that Charlie will revert back to his original school attendance and he will drop out completely. And this is my worst fear.

Today has been super positive. We have now changed Charlie’s start time and Charlie’s end time from his school day and going in an hour later has helped massively. It lessened the anxiety this morning and he went in just fine. I was there earlier to pick him up and he came out happy doing a full day at school. Education and anxiety will always be his biggest challenges and I will have to advocate for him for many many years. 6 weeks to go until the next holidays.

Georgina x

Half Term June 2021

As always, our half terms and school holidays often look different to other families. We are homebodies and like to stay in. This is primarily due to Charlie’s sensory issues and anxiety that controls the majority of our lives.

We had a pretty good week actually, I took the decision to invest in a hot tub for the holidays. It came on Wednesday and then left on the following Monday when the children went back to school. So we had a good few days with it!! Charlie loves the hot tub, he gets a lot of joy out of it and I love seeing him so happy in the water. We are not quite ready yet to go swimming publicly, he does go twice a week at school (when he goes, that’s a different story).

Tuesday he should of gone with his community carer for the day to go to short breaks, which is the respite I get for him and the opportunity for him to access the community. However, the anxiety played a big part and he was unable to leave the house. I am not sure if it had been because it is such a long time between sessions (Easter to June half term) that it was the transition that he struggled with. Or it was just the anxiety.

Over the Easter hols I had run out of the anxiety gummies that he was taking. I had tried to purchase them online but to no avail. I can’t find them anywhere. I don’t know the brand or the online shop I got them from so we are now really struggling with anxiety and it is such a shame.

We did of course, have a fabulous few days in the hot tub and that has definitely made all the difference to him. And that’s ok for us, that’s our normal. It’s not for everyone but that’s ok because we accept life like this.

Back to school, for the final term of the year!! Charlie then of course will be moving up to year 5. And then we will see what the summer holidays brings.

Georgina x

Online safety.

As you know keeping our children safe online is really important to me. Children with disabilities are far more vulnerable online than other children. One of our followers that read our blogs and social media wanted to share a guide to protecting children online with me so that I can share it with everyone who reads the blogs.

You can read the article below:

The Ultimate Guide to Protecting Your Child Online in 2021 (vpnmentor.com)

The lady that sent me the link also had another link to a website within her message I will share

Advocate-news.com covers local news in Fort Bragg, California. Keep up with all business, local sports, outdoors, local columnists and more.

This link above will be useful for our followers from the United States although not so much in the UK or Europe. I think it’s amazing when people share with me their links and advice, columns and I really welcome it!! If anyone ever has anything they would like me to share please get in touch! Our inbox and emails are always open.

Thanks for reading

Georgina x

EHCP Annual Review is underway.

Last Wednesday we had the EHCP annual review. For those of you that don’t know the annual review takes place every 12 months unless there is cause to bring it forward to an emergency annual review. Since Charlie’s EHCP was finalised in July 2017 we have had two emergency annual reviews both of which was for the purpose of the placement ending.

On an annual review the LA can keep, change or cease an EHCP so pretty important stuff really. And it is there to enable the child to get the full potential out of the placement. This review though was the confirmation review. This is what happens 12 weeks after an independent specialist placement has began and Charlie should of had this review in December. However, he was not attending AT ALL in December (for those of you that have been following us for a while). So it was moved to February, but… Charlie had just moved class and had just done his first full time week. I didn’t want to pre empty the review by having it with not enough evidence. And he hadn’t been at school consistently enough to know how he would manage after a school holiday. So it was moved to 12th May instead. Overdue, but, it would mean we would have the right level of engagement and evidence to prove the school was working.

A confirmation review and paperwork like Charlie’s 12 weeks on, gives the LA the opportunity to see if the school is working and if their money is being “well spent”. If we had of had it in December, there would of been the possibility that the LA could terminate the funding as placement wasn’t working. And I’m sure there probably will of been instances that families will have had that experience. But, this is me! And I advocate hard. And I absolutely would not have let that happen. We would of gone back to court without a doubt.

This is not the end, we haven’t just had the review and case closed Charlie gets another 12 months of funded placement. There are changes to be made, recommendations by the OT. More OT provision to be introduced, and some assessments that the school will do to help with his writing and learning.

These changes have got to be done in 10 days. (I’m unsure if it’s 10 working days or just 10 days). Then it is sent to me to agree, then the LA to agree then a new version of the EHCP is produced. This will then be version 8. And then that is it for another 12 months unless something drastic happens!!! But let’s not think negatively.

Will definitely update you all when the new EHCP is finalised, yet again.

Georgina x

Unemployable!

It’s been a funny week, Charlie has been “late” every single day. I use the term “late” loosely because actually at Charlie’s school there is no late there’s either attending or try another day. And honestly, it really is that free flowing, there is no pressure from the school to get Charlie in any day but lots of encouragement and patience and it really does make a difference.

Today, was the first day we had zero stress and anxiety going in, Charlie actually skipped in and was so happy and I think that is because I removed the pressure from myself to work. I feel unemployable. There is literally no way I can make employment work for us right now. I work very few hours, and the dream always was when Charlie settled back into school I could go back to working between 20-30hours a week to give us a better income and a better standard of living. But it’s impossible, there is no wraparound care, I’ve already used all my “babysitting” tokens by doing the volunteering, mentoring and working Saturdays. There is nowhere I can take Charlie that I won’t be paying triple for his childcare. How is that fair?

I feel exhausted by the efforts of job hunting, but I must do it. Because there’s no guarantee that next month the DLA will be renewed at renewal and I feel immense pressure to provide for my family and give us an income that is sufficient. It has been difficult mentally to get my head around this. It has been good to get the house sorted, up until now I’ve always had so many more priorities than the house. Work, children, University. The house was never a priority surviving was.

So concentrating on the house, is bittersweet and leaving me with conflicted emotions. It’s good for us, it’s good that I’m given this space and time to be able to build us a lovely home but…. I don’t dare spend any money! I have spent our holiday money on a new carpet as we don’t know what will happen with travelling. But, as for spending money on making it beautiful I am doing it on the strictest budget because I feel our income is not guaranteed and what if we lose it? What if the DLA is not renewed, I will then lose the carer’s allowance which is my income. That’s like losing my job. I will lose that income and that is worrying.

Getting my head around carer’s as an income as my main role and job in life has been difficult. It’s never what I imagined, and I’ve struggled to accept it as my employment role. I battle with it daily for many many reasons and it always leaves me conflicted.

Hurry up June. I want to leave this limbo land so I can refocus my energies and time and give Charlie the best of me.

Georgina x

What a day, roll on the weekend.

Today has been extreme. It is really hard to explain what the small changes impact on Charlie’s daily life. Up until now we were having a really rubbish week and things had been very tricky. Charlie had only managed 3 hours on Monday and it was such hard work getting him there, we didn’t manage to get there until 10.30am and I was really expecting him not to go at all. It’s times like this that I realise how lucky we are that Charlie only lives 10 mins drive from school. His classmates live in Lichfield and Sheffield! And have a really long drive in the mornings. Of course, it is just pure luck that the school was built so close and for that I am forever grateful.

Mondays are notoriously bad for us, the transition from home to school on a Monday is hard work and very challenging. After school because the weather was so good, I didn’t want to go home so we went to the park to play a bit of tennis and have a walk around and it was really nice. We both really benefited from it.

Tuesday was just as bad, and I struggled to get him in and then he wanted picking up early. It was becoming a pattern. It was then I realised that I couldn’t start a new job. I wouldn’t be able to concentrate or manage to take on a new role and new environment knowing how much Charlie struggles just to get in and it is definitely not in Charlie’s best interests for me to think about continuing my career.

Wednesday was slightly better, we arrived on time, but he got in and out the car several times and by the time I had driven away from the school it was gone 10am! By some miracle he stayed the whole day, however, he had swimming first thing and then horse riding in the afternoon! Excellent! Charlie has always received horse riding really well and it’s really beneficial for him. So Wednesday will probably now be his favourite day of the week.

Today, we didn’t get there until late again, after dropping his sister off at school, we then HAD to go to McDonalds, I forgot that was the plan and went to school as normal, Charlie freaked out and we had to back track back again! We got to the drive thru and one lane was closed!! Finally got to school around 9.40am which wasn’t late in the grand scheme of things. Not in comparison to the previous few days. However, I did have work today and I walk a friend’s dog on a Thursday morning so it was a bit of a rush.

Charlie thankfully had a positive day and tomorrow he has swimming again, so no doubt he will find tomorrow a breeze! I wish he could go swimming every day, it would certainly make a difference to our life. As for updates, we’ve been paid the short breaks entitlement for 100 hours! What a relief, knowing that there is literally a pot of gold to fund respite is unimaginable, the joy this gives me. Still no news on the DLA, I rang yesterday and despite them having the renewal forms in March, it still hasn’t been assigned to anyone. And the paperwork for his EHCP annual review has arrived (again, because the one in February was cancelled) I am hoping I have the time to go through it and see if there is any changes I need to be aware of since the last one.

Never a moment’s peace for sure.

Fingers crossed for a full day at school tomorrow. And then I’m actually having a night away Saturday, Charlie’s dad has stepped up the co-parenting (woohoo) it takes a lot of effort and communication from the both of us, to make sure Charlie is parented to the best of our abilities, and for once it is in my favour! I haven’t had a child free night away since July 2019 so I am really looking forward to it!

Georgina x

Easter 2021 and short breaks update.

With Covid 19 restrictions starting to ease, it made absolutely no difference to our Easter holidays. We are such home bunnies, we didn’t venture too far. We had a failed attempt at meeting a friend from school, anxiety was a killer that day. A trip out to a rock climbing centre, a trip to see the cousins, lots of Easter eggs, snow, 24 hour challenges, little sleep and a new hobby.

Easter has been rubbish, simply because it was at the start of the holidays, then we have spent 12 days doing just about nothing and it has been a very long 2 weeks! As well as this, it is always advisable that your child takes a break from melatonin. Although Charlie isn’t on clinical/medical melatonin and it is herbal I have still given him a break. This means we have had A LOT of 1am, 2am, 3am bedtimes and 24hr challenges. Beyond exhausted! But we carry on! Well we have to really. It has been nice knowing we didn’t have to get up at 7am although for Charlie he seems to still get up at that time regardless.

I will be very grateful for when Tuesday comes around. Although, we did attempt to go and see one of his school friends the demand and the anxiety of it all meant that it was not achievable. And that is when I realise that Charlie will always be excluded, whether it is from education, activities or social engagement, the world just doesn’t account for his wellbeing.

We will always try again with the friend, it is not lost. There will hopefully be more opportunities for Charlie to enjoy social activities and building friendships.

The short breaks plan is working great. Charlie went to an indoor rock climbing centre on the first session. However, it was too busy and as the parents/carers weren’t allowed to sit down and meals and drinks were takeaway only Charlie couldn’t manage this. So they ended the session early. I was actually ok with this, he was still gone for 2 hours and he still enjoyed his session with his respite carer. However, the 2nd session was a different story!! Charlie struggled that morning. He was volatile and aggressive, having no structured activity was not positive for him and he ended up in a meltdown. Eventually the carer persuaded him to go to McDonalds with her and then they took a drive to Ashbourne and Charlie loved it! And since, we’ve done another couple of trips up there. I think this is going to be his new favourite thing to do. Just the drive, we’ll not be getting out and doing anything, just the drive.

Apparently, tonight we’re doing another 24hr challenge. I hope not!

Georgina x

Tips when looking for a school.

After that incredibly long blog surrounding our journey to finding the right school I thought I would write a blog on what I think would of helped and supported me through this as a SEN parent. As mentioned, the LA was no support in the years of looking for a suitable placement and this is echoed nationally. Recently I was contacted on social media to help support a family, whose daughter was struggling at her current school but when the family spoke to their LA they were simply told “look around schools”. Familiar? It is disheartening that that is the advice given to parents when trying to secure educational provision that will change the trajectory of their children’s lives.

This is what I came up with.

• Always read the OFSTED report. The OFSTED report will give clear indication of how the school is maintaining it’s overall standard of education.

• When looking at the OFSTED if the school has ever been “requires improvement” or “inadequate” has improvements been made? When was the last full inspection?

• Look on the website for the SEND information report. Some Local Authorities require schools to present their SEND provision and show what can be accessed. Others just require a statement to how SEND provision is valued in the school. All schools must provide some level of SEND support.

• Speak to the SENCO. All schools have a Special Education Needs Co-Ordinator.

• Look around. This is the best way to determine whether the school is a good fit for your child.

• Check for cognitive ability. Does this special school have limitations on cognitive ability or can children progress, if so, how? when? to what level?

• Is there any on site therapies? if not, how/when does the school buy them in? Is it weekly? Termly? what additional support is there for the child?

• Does the school do any off site enrichment activities? What are they? are they accessible for your child?

• Policies. What is their behaviour policy, do they use rewards or sanctions? How will your child manage that? What is the restraint policy? Which method do they use? Who is trained in restraint? Can you see their policies? Are they available on the school website so that you can read through them yourself? Does it have an online prospectus.

• Do they have a nurture programme? does it have any limitations?

• If it is a secondary setting what provision do they have for post 14 years and post 16? Can the school accommodate post 16 and further education.

• Do they use alternative education providers. If so, who?

• How is the school maintained? Is it a local authority? academy or private/independent school? What is their admission policy?

• If they are an academy trust what sort of reputation does the trust have? How many schools are under the trust?

• What is the school’s core values and ethos? Does it match your values?

• What support does the school give during key transitions? Through the year groups and during key transitions such as from nursery to primary and primary to secondary?

• What wraparound provision does the school have?

• What outdoor provision does the the school have? Outdoor classrooms, play area, green areas, forest school?

• What wellbeing support do they have? An inclusion officer, a counsellor, emotional coaching and literacy, buddy system, therapy animals?

• If it is an ASD unit, or SEMH unit does the unit have integrated access into the mainstream school?

• Can your child access all areas of the school? buildings and outside, 2nd story buildings, toilets, changing areas, wide doors?

• How secure is the school?

• What aids and provisions are there for accessibility?

I had no idea I would need to know the answers to half these questions and I had a child that had completed secondary education. Finding a SEN school has opened my eyes to an education system which is failing a large portion of the future generation. It is difficult to get funding, local authorities gate keep access to special education and even then, SEN schools are not a one size fits all which we found out. There is limited support, and the support that is there, you have to dig very deep to find it. It is not accessible to everyone.

My one wish in life is for education to be accessible to everyone.

Georgina