Again I find myself waiting at the end of the week to find out if Dinky is any nearer to getting a school place.
With the LEA having agreed to a placement at the (rather expensive) independent special school, we have a few more steps to go.
First is tomorrow.
Tomorrow I find out if the school will offer Dinky a placement and the cost of this. We know it will roughly be £81k + transport. (If she does get the placement offer on Black Friday, I’m pretty sure the LEA will be hoping they can get a deal!).
Then it goes back to the LEA who have to agree that the level of funding is appropriate to her statement.
This may have to be done at yet another Panel meeting which are only held on Thursdays.
So the severely optimistic start date of 1st December has turned to dust before the social workers eyes.
This whole process has been one of utter frustration. I have sat and read about lots of people getting statements and EHCPs from the same county, some pushing like I have, and some not, all starting after I did, and all getting or who have their kids settled with their child’s new school or level of support. Yet every time the phone rings for me to go back to talking therapy I have the same conversation about not having any time to do it. That my 9 hours respite is gone before I can factor in 2 bus journeys and a 45-50 minute appointment with yet another person, who I have to start all over again with.
Meanwhile, I am hanging every ounce of hope that it is good news tomorrow. However that nagging voice, the one that has scoured my memory to find every single incident where things just don’t happen for us. The struggle to find a single good thing that has happened without a fight or a loss of some kind.
I am terrified of her not getting this placement. I know I am struggling to hold it together some days and I feel I just do not have the strength for yet another fight.
I don’t know how I’ve come this far. I know if push came to shove I would give everything to getting Dinky the support and help she needs. However it is disgraceful that parents have to do this.
I have lost track of all the other things I’m supposed to sort out while getting the placement for Dinky.
I completely forgot that I had made a complaint about how long this has taken and that they had 10 days to reply. That was on the 16th of October… Have they replied? No.
So yet another thing I have to chase. The irony is not lost on me that I am chasing a complaint response past the deadline about the fact that the team couldn’t meet the legislated deadline!
I ended up leaving a semi controlled rant on the social workers voicemail yesterday after chasing round the LEA for someone who a) picks up the phone and b) knew anything!
She phoned back today asking how she could help. THAT is what you need when things suck and you begin to lose control of that feeling in the centre of your chest which makes it hard to catch your breath. Not for services to take offence and leave you more alone than you already were!
So the social worker is going to contact the LEA and explain that if they have seen me upset before it will not be a patch on how upset I will be if Dinky doesn’t have a placement start date for the day after the winter holiday!
She is also going to try and make some headway on the personal budget request tomorrow.
I think she is starting to see how I work, and she doesn’t blame me for struggling to deal with absolutely everything at once. She doesn’t even know about the fact my brother and little sister have contacted me again. Again around Christmas. I don’t know why I agreed to do it, but I have agreed to go up to my brother and his partners house to see them and the kids on Saturday with Dinky. My little sister is going to try and pop round.
The sad thing is they have to do it all covertly and round the corner from my mother’s house because she would create all merry hell if she found out. So I can’t post on facebook or say anything just incase she finds out.
Maybe I just don’t want to be so alone.
So the next two days could go very well, or they can do their best to break me… Although if the last 28 years hasn’t managed it, I doubt 2 days can!
So I shall finish my Baileys, and try to get some kip before dinky wakes up and I have to get her back off to sleep.