I have recently had the joy of being away for the weekend. It was my first full weekend away from home in 3 years. I have previously spent the odd night away. And a lot of the time I have taken a child of the household with me. However, this time, I was away all weekend Friday - Sunday overseas (Dublin) and this was the first time since July 2019. The time away has given me a chance to refocus and recharge and make sure I can support Charlie and his siblings to the best of my abilities.

Previous to the weekend, everything was so stagnant. Our plan for EOTAS (Education Other Than At School) had been stagnant for months, there was no clear plan or direction and I was starting to feel deflated and lost. I will admit, I had lost the fight. The ability to keep going and keep battling on to get Charlie’s education and mental health organised. For a long time now we have known that Charlie need medication to balance the chemistry in his brain in order to support him better so that he is able to do the things that everyone can. If Charlie was over 18, he could walk into any Doctor’s office and say, he is depressed and suffers from anxiety and he would receive that life changing medication. Because he is a child it has been kept from him. Those above us in positions of power, gatekeep this from us. Charlie tells me on a daily basis sometimes that he wants to die, hates life, wishes he was never born and is scared to leave the house. Why are these statements ignored? They wouldn’t be ignored in an adult. Maybe an adult would struggle to get support straight away due to the underfunded services, but they wouldn’t be ignored.

So for now, I have have picked up my phone - dashed off the emails that needed and drew the battle lines . I have begun to fight back and start trying to mend this impossible situation I see us in. I have written emails to the LA, school and the specialist community advisor. I did this on Monday, it is now Thursday and both school and community advisor have responded to say they will “chase” things up. But as of yet, no response from the LA. Our draft plan after annual review came out in October 2021, I refused it as Charlie was no longer attending and it was clearly established that he would not return because primarily he wants to be at home with me. This is the only place he feels safe, and unless he feels safe and secure he will not be able to learn. This is an issue of course. It will be April tomorrow and Charlie’s EHCP is still sat in draft, having been refused and there has been no progress in ensuring that the therapies in the plan are delivered and accessed by Charlie. Let me reiterate. It’s been 6 months since I refused to agree to the draft plan. After an annual review 11 months ago. It really is despicable that it has taken this long to get this far.

As always I will update with any progress but the lines have been drawn and we are now battling through to the next stage. Charlie will be entering Year 6 in 5 months and his academic abilities are still classed as reception. The level of things he can not do academically is stark, however, cognitively he can do it all. But in this life you have to walk the walk, not talk the talk. So that will not benefit Charlie.