So much fro getting a life. This week looks pretty heavily booked already. All day Tuesday, all day Wednesday and Friday morning committed to meetings with County Council about cuts. Friday afternoon and this morning going through sons 'social care assessment' that's just arrived. (Still waiting for health care assessment - current timescale is now 3 to 4 months due to unavailability of staff.) So we've got this afternoon and Thursday to do everything else. And somewhere among all this is our sons care - which is not insubstantial and the most important thing of all.
I did get to chop wood yesterday - may fit in a bit of soldering this afternoon (I like soldering).
Son seems in reasonable health just now, slight chest infection coming under antibiotic control and scalp psoriasis settling down with gentle care. This psoriasis gets me down sometimes. It's quite severe and gets a lot worse when he's ill or stressed - and he can't tell us or scratch it himself. We just have to watch it really carefully and treat it quickly but gently. I can't really imagine how distressing it must be to have an itchy head all the time and be unable to do anything about it. I know it's theoretically one of his more minor problems but it must have a fairly major impact on his quality of life - that's why we get so concerned about it.
Anyway, back to the paperwork/meetings - I retired to get away from that - didn't happen.
Subscribe to:
Post Comments (Atom)
Honestly got to be the worst part of the caring process; no one seems to just allow you to carry on with it, there's always meetings and progress reports and none of it is actually designed to get you some help, so I wonder why they bother...
ReplyDeletemeetings for me for the next two weeks as it seems my decision to homeschool at home is causing more bru-hah than the fact he tried to strangle another pupil in class.
The less 'straight down the line' services etc. needed, the more meetings - you still have to do the work/care but you have to justify it as well. And by definition, people with a disability are not 'straight down the line'. It's not even like they look after your child while you have the meetings mostly either - have to find alternative care or have meeting disrupted - I tend to go for the disruption, it can be educational, for them.
ReplyDeleteHeh, I've resorted to that as well, but I have found that also to have a downside; my son is so charming and sweet when he first meets someone they think I'm making it up. Takes a few visits at school for them to get the real picture! However, that he "cutes" the trousers off everyone certainly works in our favour as they are then very willing to try and help!
ReplyDeleteWent to semi public meeting on cuts with him last week - he 'performed' well for them. Couple of fits and lots of disruptive coughing/suction etc. We took him out part way through - they (council officers) thought it was because he was getting 'worse', in fact he was telling us he was bored and would have got even 'worse' if we'd stayed. All smiles outside.
ReplyDelete