The Goose and Carrot Pub Thread

[roaringdragon]

Everyone is welcome, and the thread disappears after 90 days.

Thank you for the last thread @lougle. I hope the doctor was helpful and DD2 isn’t feeling too rubbish this morning.

DS1 has used the last of his EOTAS hours today. There will be at least a few weeks before the EHCP is finalised and funding restarts. He will hopefully have his operation during that time, but it is still going to feel like a long time without that provision.

"Lots of people think DS1 just needs discipline, boundaries and consequences."

Yeah, I'm surprised you didn't think of that. Might have avoided a few injuries, hey? It must be nice to sit on the sidelines, watching and judging. All I can think is imagine what it would be like if you hadn't fought for all the provision you've secured. Life is exhausting enough without the worry of what other people think. When you're old and grey, I hope you look back on these years and know you did everything.

DD3 has been having a really tricky time at school. I can't really post online about it, but after a bit of lag because the impact wasn't fully appreciated, they've stepped up to help her today. She's seeming completely burned out. It would be nice if the girls took turns to be in crisis. Perhaps some sort of ticket system? "Sorry, you've used your crisis ticket and it will renew in two weeks."

@roaringdragon - take no notice. They have no idea!

LAs and ICBs wouldn’t be funding disabled DC for 2:1 or 3:1 or 4:1 care, if it were just a matter of telling offs, boundaries, etc; and you are doing it 24/7! You don’t get to go home for a break and a night’s sleep, after an 8 hour shift!

@Lougle if only it was that simple, eh? DDs could pencil themselves into your diary in advance and you would never be left feeling yourself pulled in different directions or that you need a clone of yourself. I’m glad the school is supporting DD3. I’m here if you want to discuss anything off the thread.

I would hate to think what DS1 would be like without all the support we have. The brief pause in his EOTAS provision has resulted in regression. Longer term wouldn’t bear thinking about.

@LathkillDale oh, I pay them no heed. Don’t worry. They haven’t got a clue. A not insignificant proportion of the general public thinks DS1 and people like him should be kept behind closed doors and never be allowed out in public. Don’t get them started on the cost of support. Sad they don’t see the loving, funny DS behind his disabilities/the SIB/VCB.

Lots of people think DS1 just needs discipline, boundaries and consequences. they think the same of mine including the greater family. They could all do it SO much better. They are not queuing up to actually do anything at all, and never had so I bite my cheeks and ignore. I don’t believe they don’t understand, I think they don’t want to. While I totally understand why I think if it looks like an arse it probably is. People can be kind and weak, brave and cowardly, and lazy, all at the same time.

ds is all over the place and needs more of my time and love but building work continues and is VERY noisy. We are enduring.

@roaringdragon I’m glad you’ve got your antibiotics in place. It sounds like you were heading towards sepsis so I’m glad your GP was herding you. Honk honk. We all see you.

I don't know what I'd do without you lot. Even the SW looked a bit baffled when I pointed out that I don't take DD1 with me everywhere for fun.

My DF said something really lovely today, though. DD1 hasn't spent much time there recently without me because she's not been in a good place. A friend wants to take me out for lunch and to see a film in the cinema next week as a late birthday treat. I asked DF today if he'd cope with DD1, because she's been quite tricky. He said "She's our grandaughter. Of course we'll manage no matter how she is." I mean, it's not really true because when she's on a mission it's impossible, but the sentiment behind it was lovely.

DD1's a curious creature. She's really trying to cope with the pain today, so she hasn't been crying, but her language has regressed. She's using key words instead of full sentences and one of her different voices.

@Lougle Many of the children with autism, DD1 was at school with, used to use cartoon voices. As she didn’t have autism, she never did. However, recently she has picked up the satnav voice and uses it sometimes! 🙄

@lougle are you sure you don’t take DD1 with you everywhere because you enjoy her giving you driving tips from the passenger seat?

@Zzzzzs you are right. Many don’t want to understand. Of course they think they would care better . It is like parenting, isn’t it? Before DC, people always think they would do X/would never you Y/wouldn’t stand for Z. I’m sorry DS is all over the place. Building works always seem to drag on.

roaringdragon glad antibiotics are working and you are beginning to feel better.

lougle Now if you just instituted a queuing system life would be so much better.

zzzzzs sorry about the building works. However much you want the results the process is soul destroying.

On other people's expert opinions, we have had an example this week. DH is visiting his mother and staying with his brother and wife. SIL is persistent in asking when Dd is going to get a job without any understanding at all of why that is not a straightforward task. Even DH has finally learned to just change the subject.

@NoHaudinMaWheest I’m rolling my eyes at SIL. Said by someone without an ounce of understanding into the world of disability, particularly someone with dual disabilities. Even without disability, securing a job for young adults at the moment isn’t easy, so I suspect also said by someone who does not have a DC seeking employment.

roaringdragon you are right she doesn't have children.

@roaringdragon busted! I thought moaning about it was a good cover for my delight.

@NoHaudinMaWheest a queuing system would be neater. Your SIL is ridiculous, isn't she?

I've had the nicest time with DD1 in years tonight. It was like the old DD1 glimpsed through. We watched Encanto (she normally won't watch films of any kind) and she sang her heart out.

lougle that is really lovely.😀

I can tell you that DD1 takes a very dim view of Abuela's attitude towards Mirabel.

@lougle that is wonderful.

I love those random gift moments @Lougle . Food for the soul. Yay for watching anything together.
i know it’s an expensive punt, @Lougle but what about a hot tub? Ds really enjoys his (though I’m hold at the moment because of seizures). You could always set it up in her unloved shed. Probably cheaper this time of year.

@NoHaudinMaWheest people asking about job hunters progress is extremely tedious.

We have considered a hot tub at points. Worth thinking about.

@Lougle and there she is! So lovely DD1 poked her head above the parapet. DD and I have watched Encanto in every language that it’s been translated in and by some bizarre coincidence it’s one of the six film choices to watch and write about for one of this year’s OU assignments. The grandmother is indeed a mean one.

@roaringdragon glad you feel better and hope the safeguarding is not too arduous and doesn’t soak up time from other things.

@Zzzzzs good on you for pushing on with the building works.

@NoHaudinMaWheest my pet hate is anyone asking ‘what’s next’ how about talking about what’s been instead. Your DD is magnificent for completing her degree, let her breath people.

I am burning the candle at the ends and the middle. Knackered. I don’t know how to solve the difficulty of not writing assignments if the questions are written in the ‘wrong’ way. Eg introduce yourself in an e-mail. Why would anybody do this to a travel agent, your name is at the end. Well they wouldn’t but it’s to demonstrate that you can. Humour them for the reward of marks? Absolutely not.

@PurringTiger it does all sound exhausting. Would DD accept an explanation that 'introducing yourself' is about explaining your role, whereas the signature is about declaring your name? 'Introducing yourself' is trying to build a connection with the client, not telling them who you are.

@PurringTiger When I message about travel to an accomodation that does excursions, meals etc I would start with we are a family of 4 with kids ages so they know who is coming and that might affect what accomodation and activities are suitable. With meals if they have asked might explain dietary like one vegetarian. Or for a travel agent what activities do you like e.g. wildlife. So they can tailor to you. I also put where we are travelling from like UK or England and nationalities sometimes.

@Lougle That's lovely of your friend and your Dad, hope you enjoy it.

We got to the twilight spa again yesterday which was lovely. Booked it thinking we would have a short break before lots of work happens but with the pip firm arriving and needing to sort through the moved stuff I don't think there will be more days without work to do. The car has an issue with the rear break so DH got a hire car for the day and walked the 4.6 miles to it and will take it back now and walk back. Car goes to garage on Friday and hoping won't be too long to be repaired. DS took a bath whilst we were away and was in living room when we returned. We ended up chatting through plans for house and a bit on pip form. I was worried DS does not have an allocated GP but have the name of the one from last form and DH said he saw her earlier this year and she asked about DS. The nice doctor I spoke to before doesn't appear to be there anymore.

@Lougle @Violasilkie oh my! I think I’ve got so muddled I’ve forgotten what introducing one’s self is. Of course! That makes more sense. Thank you both I just could not find the sense of it last night.

@Violasilkie DD doesn’t have a named GP I just put the practice name down.

Thanks @PurringTiger We could do that but we have a village system here where several villages which are about an hour apart in some cases do rotate the GP so it's very much a lucky or unlucky dip. And DS will not see GP since hospital so they have no contact for years so think I will need to get in contact so they are updated. But they may then start saying do you want us to do home visit etc which would just distress DS a lot and will not be very unlikely to achieve anything as he will hide so they won't see him. And him hiding could cause issues. Or it maybe he throws things at them. Or he smashes things here. I need to think about best way to proceed. Maybe if they would write a supporting letter. They may ask about health referral though it's difficult as he does not consent, will refuse everything, hide / smash things, get distressed.

The young man who died from the tiger is quite similar to DS and has the same spooked out eyes but good looking. What's concerning is his case he appears to have a schizophrenia diagnosis but no treatment sounding like he refused. It worries me as DS climbs things, loves animals, bows to them though I don't know what the solution is. Also the guy was like DS and as he's intelligent and good looking people assume he's fine and just being awkward / silly. But the only way of getting treatment is sectioning, taken in handcuffs, held down and that's no life either. And currently DS is assessed as no psychosis but he's not communicating so how would they know if he had delusions, or paranoia. His behaviour looks like it could be to me. But it could be it's still the freeze in catatonia. That's what the last assessment was saying. But how do we unfreeze him? Again it's sectioning or carry on but carrying on leaves us very vulnerable to judgement. DSs clear preference is carrying on and he's making very slow progress but would be safer to have a professional overseeing but it's difficult when he's deemed to be capable of consent and clearly refusing. There's the government scheme to put his age group in work or employment going compulsory that's worrying as he's clearly not up to either and strongly refusing both throwing things. It's whether we are stuck like this for life or he will come out of it, we are 3.5 years on from hospital now. It's not looking hopeful for a return to full functioning. We can work round that and he seems happy enough but it's getting proof longer term and whether it's best. Though the viable options are continue as we are or section and tbh I don't think they will section as he's made improvements and we are free. They also think lorazapam failed so it would be forced ECT which is scary and results are very variable with some getting worse. Argh hate Pip forms reminders.

Every patient has to have a named GP @Violasilkie . I'd just contact the practice and ask who his named GP is, or write the name of the practice. They aren't always contacted, and even if they are, they'll have all the notes on their system.