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

This blog post was written on 6/2/2020

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

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

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

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

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

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

I will keep you posted!!

Georgina x

Who needs sleep anyway?

This blog post was written on 5/2/2020

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

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

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

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

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

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

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

• Switch to a red light in the bedroom.

• Limit screen time, 2 hours before bed.

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

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

• Use relaxation and yoga

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

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

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

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

Georgina x

There are angels that walk among us.

This blog post was written on 4/2/2020

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

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

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

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

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

Georgina x

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

This blog post was written on 3/2/2020

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

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

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

I will keep you updated on our struggles.

Georgina x

When school got too much, who will help us now?

This blog post was written 1/2/2020

So, here we are, 2 and a half years on from entering the Pupil Referral Unit (who have been fantastic btw). At a point, where school is no longer the happy safe place, and school refusal is actually the norm now. Since the start of term, after Christmas break, Charlie has barely attended for a week. In fact, I can’t actually remember the last time he did a full week or when he did full time. We still have no final Educational Healthcare Plan, and we have no provision. What was promised to us, just a 6 month stint in the PRU and then a new school will be found. A new mainstream school was found, but unfortunately the plan wasn’t good enough to meet his needs, and we ended up with another permanent exclusion! Two by the age of 7! That shouldn’t happen to any child. The base line is, not enough was done and waiting times were too long, and Charlie was failed. And that should not happen, but who can I hold responsible for it? What is the plan of action? In times of these crisis’s I turn into momzilla - SEN momzilla, and I make sure everyone is aware of our difficulties. Last week it was emailing the head of the SEND department at our local authority, and this week already I have put in a formal complaint against the LA and written a report for the MP asking for support in our situation. I’m not sure how much help it will be, but I refuse to just sit back and not fight or hold services accountable.

I know, it’s lack of provision and an extended wait time that has lead us here, but what I want to know, is what is going to happen now? Who is going to help us? And what is the plan going forward? But alas, I have had zero communication and feedback from the LA and I am still no wiser on any plan, and with the PRU now breaking down too, what now? Where does this leave my 8 year old?

This morning I had a phone call off the Speech and Language therapy team. They would like to deliver his therapy at home, as he is not in school. Fingers crossed this is a positive move and Charlie engages, as he doesn’t tend to tolerate strangers in our home, yet another difficulty of navigating through SEN life and ASD parenting.

Georgina x

The Beginning

This blog post was written on 28/1/2020

There’s Something About Charlie - The Beginning.

Charlie is the youngest of three children. His brother and sister are neurotypical, but there was always something about Charlie. He was the only one of my children to exclusively breast feed and to co-sleep with me, I literally could not put him down. He was very clingy and didn’t always respond to his name, as a result he had his hearing tested three times. He was challenging, and traditional discipline methods simply did not work! He didn’t settle anywhere, and everyone struggled to keep the balance of keeping him happy and trying to avoid the meltdowns, running off and physical assaults, how little we knew back then!

At age 3 we were given a family support worker, who assured me I was doing a great job and that he would catch up in time and develop normally. She did some amazing work with us, and at the time I was working full time and juggling life. I cut my hours down to 22.5 so that I could devote more time to Charlie’s needs and he was between me, his childminder and his father and we all seemed to meet his needs.

Charlie started the local mainstream primary school in September 2016. This was a school both my older children had attended. He was clingy, and difficult to leave, in the evenings on picking him up there seemed to always be an issue, mainly from other classmates being physical, Charlie really struggled in the environment which could only be described as “chaotic” and this resulted in me removing him, as the physical attacks on me were daily and so was the running off and hiding. Life was very traumatic, for all of us, him, me and his siblings.

I moved him to another local mainstream primary school in February 2017. Unfortunately, this move was very traumatic for Charlie and resulted in him having numerous days off due to school refusal, when he was there he didn’t engage and spent a lot of time in the inclusion officer’s office. He was physically restrained and by May 2017 they had made the decision to involve the local Pupil Referral Unit (PRU) for advice. It was at this point that our previous family support worker came back, I was struggling with work and my own health, I couldn’t hold down my job and ended up with appendicitis while off sick from work leading to complications from previous surgeries. The family support worker encouraged me to apply for Disability Living Allowance, and we were successful, this meant I was able to resign from my job (a much loved job in the NHS with 8 years of service) and claim carers allowance to ensure Charlie was fully cared for and his needs were met at home at least. She also arranged for us to go on the referral pathway for Autistic Spectrum Disorder in April 2017.

After the permanent exclusion, he went to the PRU and we applied for an Educational Healthcare Plan (EHCP) with the view of Charlie going back into mainstream education supported by the plan. I was told initially he would only be in the PRU for 6 months. However, after a LOT of preparation, discussions and adjustments, the school, another local primary school (3rd in 2 years) was unable to cope and by April 2019 after just 4 months he was permanently excluded again. And bounced straight back into the PRU.

In October 2019 after a 2.5year wait, Charlie was finally diagnosed with ASD. In May 2018 I had a private assessment done to diagnose Charlie with Sensory Processing Disorder (SPD) he also struggles with a learning difficulty, speech and language, anxiety, post traumatic stress disorder (PTSD) and challenging behaviour.

So far, we are without a provision, I have no respite. Charlie no longer sees his father, as he was inconsistent at contacts and despite best efforts, contact broke down several times in the space of a few months and he was unable to give Charlie the routine and consistency that he needs. He needs this as he struggles with change. This is part of his ASD and his needs need to be met in every environment to ensure he doesn’t meltdown and lead to risky and unsafe behaviour. This of course means I have no break other than school. His plan isn’t finalised even at January 2020, we have no idea what the future holds and how we will manage.

I hope you enjoy our journey and find some help and support within these pages

Georgina x