Hi, everyone.
I had thought that by now I’d be logging on to give you all a positive update but the situation has actually got worse. We had a different social worker come out to do another assessment and she was even worse than the first one. She gave me a lot of information that has turned out to be factually inaccurate, spent a lot of time arguing with me about what my son’s needs are, disclosed personal information about two other families (she didn’t name them but through describing their situations to me it was possible for me to identify them as the learning disability community is quite small where we live and we know everybody), and she left without gathering enough information to do the assessment properly. I challenged her about this, she said she had plenty and didn’t need anymore. I emailed her a list of his needs afterwards which she said was helpful - obviously if she already had all the information it wouldn’t have been helpful at all. I was very distressed and stressed by the whole experience and decided not to proceed with the assessment until the Guardianship Order had been granted.
The Guardianship Order has been a whole world of weirdness as well. The social worker who came out to the house to assess my suitability to act as my son’s guardian told me, in front of my son, that I should complain less and learn to bite my tongue. To say I was shocked is an understatement, I don’t think I’ve had a man tell me to bite my tongue since the early 90s. Felt like I’d slipped in to a timewarp. The process with guardianship involves three assessments being carried out, written up and submitted to the court within a thirty day period so timing is tight. I was not involved in organising that part of it, I was told when to attend the assessments. The two medical ones were done late September and early October. The social worker’s one wasn’t until early November and as of yesterday he still hadn’t submitted his report. The solicitor has been chasing him for a month and it looks like they can’t file because everything is so out of date now (the court won’t usually accept reports outside of the thirty day limit and it’s ten weeks now since the first one). On top of that I’ve discovered there’s a lot of work for me submitting reports and having meetings with social workers once the order is granted which I wasn’t aware of, and on top of that it’s transpired that there are actually agencies and a respite centre that can be paid directly by the local council, so if we’d known that at the beginning we could have worked with that. It might have been that they aren’t suitable but at least we could have tried and we’d know where we’re at now.
I genuinely find the public sector to be the disabling aspect of his disabilities. My son isn’t difficult to look after; at this stage a lot of it is supervision, avoiding triggers and giving information when he gets stuck with something. He’s lovely company, he has a number of hobbies that he’s very in to and will happily get on with alone, and he has his social groups and clubs that he enjoys so he has a good mix and a good balance in his life. It works, and it’s twenty years of trial and error that have got us to this point so it’s lived experience and plenty of chopping and changing along the way. The only issue for me is that he can’t be left safely alone for any significant length of time, because he just doesn’t have the capacity to deal with emergencies or unplanned events, which of course means I can’t do anything for myself. I also have no transport of my own and no money because we’ve lived on benefits for years, so even getting people in is pointless now, because I can’t go anywhere. I’ve been desperate to get back to work for so many years but I’m not willing to neglect him in order to do that, and that seems to be what everyone expects me to do. People see him calm, happy and relaxed and they presume me to be an over protective, over anxious mother. They don’t seem to be able to understand that the reason he’s calm, happy and relaxed is because we avoid the sensory overload situations that create the opposite effect, we spend a lot of time at home and when we’re out and about it’s usually doing things and with people that we know he can cope with - trial and error again. The effort that goes in to organising his calendar so that he’s doing as much as possible without getting overloaded is astonishing, but it’s invisible to everyone else. And whatever I say is ignored because I’m ‘just his mum’ and it’s only ‘my perception’. The social worker who’s spent ten minutes in his company, doesn’t know his diagnoses and hasn’t read a single report claims to know him better and can’t even see how incredibly stupid that mindset is.
Sorry for the rant. I try to be practical and just get on with what needs to be done but I feel quite scared. They seem to have an institutionalised mindset here that I haven’t experienced for a long time; the social workers in England have generally been crap but with one exception, they’ve been of the pointless and inefficient variety. Now we’re in Scotland they seem to be more of the ‘we know better and you’ll do what we say’ kind, which I find very frightening.
Anyway. I know not where we’re at just now; I’m reluctant to engage further with them until I feel more secure. I’m considering moving back down South, almost just for a ‘better the devil you know’ feeling. And I think you can manage a budget on someone’s behalf without a guardianship order if social services agree and it’s all agreed outcomes etc? I’ll have to check that, i think I read it somewhere but I read so much that I lose track of it all.
Sorry again for the moaning. I hope everyone else is well 
And if someone could invent calorie free mince pies that would be a big help, my box a day habit isn’t doing anything good for my waistline. Lol xx
