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

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