Last week, I came up with a plan that on Monday I would try and catch up with life admin and on a Friday I would try my best to advocate for Charlie and chase things that he needs. This did not work! Although I did leave a message last Friday to the SEND officer in regards to our respite hours. So I did get a little advocacy done.

It became clear on Sunday, that my plan wouldn’t work. I had agreed on Friday to complete my hours for my job at home on Monday, I had also agreed with school to send Charlie in at 2pm. On a Monday my eldest son is at home all day as he is doing remote learning for college, so I use that time on a Monday to go food shopping (it is painful for Charlie to come with me, I will do a sensory processing post at some point) get petrol, do a post office run and any other life admin jobs I might have that means leaving the house. I suddenly realised that I had stretched myself too thin and it was impossible to organise all this and survive the day. Unfortunately school gave, I had thought it might, as it’s so hard to transition Charlie back into school when he has been out for an extended period of time.

I had completely forgotten about the email to the SEND officer, and today missed a call off a number but had an answer machine message. Unfortunately I was unable to answer it but I rang back and it was the short breaks manager. Short breaks is the respite service our Local Authority use, this was decided after a social care assessment that concluded that I needed support with Charlie. I will pop some links below.

Finding respite care | Disability charity Scope UK

Your needs as a carer | Contact

The manager was lovely and agreed that they couldn’t meet the needs of Charlie, he was on a waiting list but it could be several months before he was allocated time in their service (I know it’s more likely to be years) so I could apply for direct payments and employ a carer for Charlie using my hours. Again I’ve popped a link on.

Direct Payments - Carers UK

This isn’t what I wanted, I wanted Charlie to have access to support services in the community which would give him a chance to socialise with his peers. But understandably, we are over stretched and underfunded. So when I explained that Charlie was only accessing 2-3 hours of school a week, it had been like that since September, and when I did take him I sat in the carpark she doubled the hours. That’s right, you read right!! She doubled the hours there an then!! After being extremely apologetic that I have lost out so far, acknowledging that I have accrued 11 hours and I have no way of receiving that, the next financial year I can have extra. Clearly, the hope is by the following year Charlie will be full time in school (I hope, I can only pray - he hasn’t done full time since he was 5) and then he can go back to his original hours with the plan of hopefully gaining some hours in a community based activity centre. But let’s not get ahead of ourselves it’s a long way off!!

For now, I am going to enjoy the prospect of 11 hours in the February half term holidays and at least then I can spend some much needed time with my other children.

Georgina x