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.

DD1 has been in tears regularly, since she came home, over the drop attacks. She’s into zoos at the moment, so we took her to a big one near us yesterday. She was back to her normal happy self.

The consultant asked her on Tuesday, if she wants an operation to make her better? (Replacing the battery in the VNS). He didn’t explain to her, what it really entails - screaming hysterically with pain, when she come round, and suffering for 2 weeks after. He didn’t ask us, if we consented either - just talked as if it’s going ahead! I told DH beforehand, it was heading this way and imo, he could take it to court.

It’s been done twice, and did nothing for seizure control, so when the second battery ran out, we didn’t put her through a replacement again. We will have to put up with saying afterwards:

“We told you so!”

@drspouse sorry camp was disappointing. It's good that you've identified next goals though.

@Violasilkie well done for DIY progress. It's all coming along.

@LathkillDale that all sounds so difficult! Can you ask for a best interests meeting? I'm glad the zoo gives a bit of relief.

This weekend has been hard. DD2 was released from hospital yesterday. We had to go back to get her medicine, and in the three minutes it took for me to get to the ward and back, DD3 & DD1 had a spat over DD1 humming to music in her headphones and DH had upset DD3 by telling her she just needed to deal with it to keep DD1 happy so she didn't kick off. Lots of hurt words exchanged.

DD2 is exhausted, understandably, but she missed the last two Mondays at college so I'm hoping she can make it in for the 1½ hours.

Lougle glad Dd2 is out of hospital and I hope she manages college today. Also hope the other two settle down. It is so hard walking on egg shells all the time.

LathkillDale that is quite scary. Is there nothing you can do to get your informed opinion listened to?

Fififizz I hope your Dc has a better week at college.

Violasilkie You have made great progress. I hope you don't have too long to wait for a plumber.

We have decided not to appeal Dd's driving licence refusal as it would need a solicitor and medical report and could run into thousands. When we get the SAR through we will see if we can pinpoint anything we could ask the GP to clarify and submit that as additional information and hope for the best. If not we will wait a while and reapply. At least we have some knowledge of the pitfalls now.

Dd also asked me to pick your collective brains. She thinks that noise sensitivity is contributing to her tiredness especially out of the house. However she can't tolerate anything in or over her ears. Is there any solution to this conundrum?

@NoHaudinMaWheest Thanks.

No, sorry I can’t think of anything to help sensitivity to noise, without using something over or in the ears. Is it possible to occupy her mind with input to another sense.

DD1 apparently learnt to cope with it, as she got older. It’s very rare she complains about loud noise now, except a few specific ones like hand driers, babies’ crying and women’s high pitched laughter. We either avoid hand driers or move her, if it’s babies or women.

DS bought DGD ear defenders for when they go to noisy events.

@drspouse I’m glad you had a great weekend at camp.

@LathkillDale could you write a letter/email setting out your thoughts? Then ask for a meeting/appointment to discuss.

@Lougle I’m pleased DD2 has been discharged. I hope she made/makes it to college today. It all sounds difficult with on easy answers and no winners.

@NoHaudinMaWheest I’m not sure how helpful this is, but DS1 can't cope with noise but also struggles to tolerate ear defenders/noise cancelling headphones. He has ear defenders and Bose noise cancelling headphones and sometimes he can cope with them for a short time, but sometimes he can’t tolerate them at all. We find his tolerance both for noise and the ear defenders/noise cancelling headphones are lower when his wider anxiety and dysregulation levels are higher. His tolerance is also lower when there is other sensory input he is struggling with. We are very selective about where we take him, in part to avoid noise.

@NoHaudinMaWheest the only alternative I can think of is treating noise like pain until you can remove yourself from it. Square breathing, squeezing something etc. How upsetting for your DD.

I have missed everything but what I have read is still very hard going for a lot of posters.

im tripping over myself working and tonight is return to study. Slide the gin barrel over, straws for everyone.

Glad you had a great camp @drspouse

Hope return to study goes well @PurringTiger

Thanks @NoHaudinMaWheest Hard to solve noise sensitivity without the ears involved but DS was never sensitive to his own noise so might have been able to do noise controlled by himself (like an ipad with sound) though wasn't a fan of music. Or soundproofing if its somewhere that's an option.

Hope DD2 is getting better @Lougle

DH is just laying the tile floor today, should have taken an hour but DH is being a perfectionist and its taking all day. He's now gone to piano but I really hope he sticks the final tile down tonight as we need it ready for electrician later in week. He kept recutting one tile and then found adhesive was dry so went out for more and they have it in stock but he couldn't find it so he came back and I ordered it so they will get it and he's off again but is going to piano. Tomorrow he needs to collect DDs stuff.

Thanks everyone for your input. As I suspected there are no easy answers.

PurringTiger I hope the return to study goes well.

Has she tried a portable white noise machine? They are really small and you can pick them up on Amazon for £20. Tinnisoothe makes a pendant one but it's £365. Some people with misophonia find it helps to reduce the focus on the noises.

DD1 has been pretty tricky today. She punched the car window hard enough to bruise her knuckle earlier. I think it might be the crossover process in changing her antidepressant.

DD3 still hasn't heard anything about a work capability assessment for her credits only ESA claim. I don't know if that's normal or if I need to chase it.

Do any of you worry about your retirement/future? I've barely worked due to the children's needs and I worry that if I am ever in a position to work I'll be an unattractive candidate. It's a bit sad.

I've managed to get through to the DWP, who put me through to the Health Advisory Assessment Service. Apparently, she has 'moved on to the next stage' and we'll get a letter with an appointment soon. If she had been selected for a face to face assessment, they could have booked it in, but she's been assigned telephone/video assessment.

@PurringTiger good luck with the return to studying.

@Lougle I hope DD3 isn’t waiting too much longer. Some WCA are taking a very, very long time. Some areas are longer than others because some HAAS have more of a backlog than others. DSs had paper-based assessments that were done quite quickly.

@Lougle i worry about the future way too much. It’s a thin line between having a small private pension and losing access to pension credit and that gateway. The c£45k pa for a ‘comfortable’ retirement is way out of reach for most of the population. I expect 90% of people are flapping!

No joy with studying yet….

DD1 was always assessed for ESA, just on the papers. She never had a WCA. Likewise, when she migrated to UC.

DH has a SIPP, so we should have enough to live on, up to the age of 90 - but I doubt either of us would live that long anyway. We haven’t started drawing on it yet, because we are both still working part time and the state pension helps. The longer he leaves it to accumulate the better. However, I am acutely aware that pensions are a shit show for many carers.

What makes me so cross is the annual allowance of £3,600 for those not working. So if you had the chance as a carer to put more in your pension to benefit from the compound interest you can’t so tough luck. It leaves women potentially very vulnerable to abuse.

It's not easy, is it?

@Lougle you would be an asset to an employer, but I understand the worry about your employment gap.

I will have a full state pension. I also have a small (for the reason @PurringTiger mentions) private pension and a couple of small, tiny, really, occupational pensions. Luckily DH’s pensions are good and if he dies before me I will receive a proportion of his pensions so should be OK.

@LathkillDale a F2F or telephone/virtual assessment would be an utter waste of time and money. A paper-based assessment is still a WCA.

@LathkillDale DD1's assessment was paper based. She scored 0 points then it just says "Because eating disorder". It still makes me laugh now at how thorough it is!

With DD2, she came on camera long enough to confirm that she didn't want to talk to them, thanks, and then I answered the questions. It wasn't the easiest assessment because she was fixated on DD2's inability to cope with change and I had to keep saying "Well we make sure there isn't change but she wouldn't cope well if there was." She said she had what she needed though.

DD3, I guess, will depend on whether they understand that she's ok as long as there's no likelihood of seeing anyone she might recognise or who reminds her of someone she recognises, which isn't an easy bar to get over. The trouble with DD3 is that she looks fine until she isn't. Seeing her at the local FE college visit really highlighted that. She was pale and avoiding eye contact and unable to talk except for one word answers. Even though we only saw about 10 people in the entire visit, she was scanning for threat the whole time.

It wasn't the easiest assessment because she was fixated on DD2's inability to cope with change and I had to keep saying "Well we make sure there isn't change but she wouldn't cope well if there was."
This sounds like DS DLA form when younger - he didn't go to any extracurricular activities so it was hard to say what help he needed when going to extracurricular activities. We kind of put in everything we did to help him with anything and worked out how it would apply to extracurriculars. Also, some of the things we wrote about he did at home (e.g. art/crafts) and the help he needed wasn't just social-based.
We've been keeping DS screen time as low as we can and yesterday he had only 15 mins left at about 7pm, so he watched a couple of short children's programmes and then said "bedtime" and we said "no, it isn't, you can stay up, you just can't watch TV" so he sat on the sofa copying a magazine cover for about half an hour while I did some sewing and DH tried to get to grips with my DM's estate. It was very calming.

Yes, it would. Conversation with DD1 can be a Kafkaesque experience sometimes. Last night, we had a roast dinner - her favourite! At bedtime, she asked for more food. Given she needs to lose weight, I offered her popcorn, as a low calorie snack. She called me a stupid woman, because nobody eats popcorn for breakfast! We explained several times, we eat breakfast after we get up on Wednesday morning, not at bedtime. She just told me, I was a fucking idiot, a freak, stupid popcorn woman….etc!

I can only assume, it was another example of her sketchy grasp of word meanings?

Finished floor tiles all down in laundry room on Monday. Then Tuesday DH got DDs things from Oxford and she has gone off to China for 2 weeks and we return the things to her new room after that. I hoovered all upstairs and cleaned upstairs bathroom, the cat is now back in fluffing mode so upstairs is done.

Then we have electrician in tomorrow so today DH and I have done 3.5 hours downstairs - DH grouted the floor of the laundry room so that room is ready for electrician tomorrow. I cleaned the kitchen so its ready. Then I cleaned DSs bathroom and finished the first coat of paint on the walls and ceiling of all the bathroom and its quite thick paint so looks pretty finished already. I cleared the rubbish DS had left, mainly fruit. I then went in DSs bathroom cupboard and have given a clean to it and a first coat of paint to about half of it. Found some wintery sheets and pillowcase he hadn't used so put those on to wash as he'd left them on the floor and those are done now and means don't need to buy him one. I am painting the shelves in there too as they are older shelfs. And also cleaned again behind washing machine and tumble drier. DS did leave bathroom wide open for me to do work though after 3.5 hours he was opening the door like I want my bathroom back now so I stopped then. Also I cleaned after DHs in laundry room, and got him to throw out his rubbish from it though some is apparently waiting for the next bin. DH was commenting on how slow he is compared to me but DH is very much the perfectionist and can get stuck on things if not perfect whereas I just do things quickly and find workarounds. But DH is useful for when we need things done perfectly. I never think its worth it with DS as he's like an elephant/wild pig using things.

DH has signed us both up for helping at the vineyard on Saturday picking the grapes as volunteers but we get lunch and drinks and its just to early afternoon.

@LathkillDale is it rude to be glad that someone else has ridiculous conversations?

Your house is a full time job @Violasilkie ! Well done.

@drspouse yes, I think we mould our lives so much that we don't realise how different they are until people ask utterly crazy questions that are really quite ordinary!

The canoe club leader has kindly said that DD3 can do her physical section of the silver D of E award with them. She went to the boat show today and came home saying she thinks she's a thief! There were lots of stalls with freebies and bags, etc.,but she took a bag from a shelf then it's occurred to her that maybe that stuff wasn't part of the giveaway. I've offered to track down the merchandiser but she says it's not that deep! I'm throughly confused. She's absolutely not someone that would steal (and in fact gave away some of her haul to some kids who hadn't managed to pick up as much stuff) so it's a genuine error if it turns out to be one.

DD2 managed to go to college today and told me that she had sat next to another student in class. Well, she sat next to DD2 and she didn't move away, so progress!

DD1 has been very labile in her mood over the last few days. I think it's her medication change. It's so hard for her to have no plan in place. I have a meeting next week with the SW and Psychologist to talk about what sort of social care provision she might need.

I've finally got a registration number for DD2's car, so hopefully it might be here by early October.

So much depends on whose desk the forms land on, doesn’t it? It shouldn’t be that way, but I can’t see it changing in the foreseeable future.

stupid popcorn woman

@LathkillDale

@Lougle I hope you find a plan that works for DD1 soon. DD2 is doing so well.

I took DS1 to swimming today. He fell asleep in the car on the way back. Instead of going straight home, I took a detour to a drive through Costa for coffee and cake. It was much needed after a long night.

yes roaringdragon grab those opportunities when you can.

lougle Dds 2 & 3 seem to be managing quite well in the circumstances. Good news about the rowing club and DofE.

Ds's drama group have been great about enabling him to have a part in this year's pantomime. He has really wanted to act as opposed to just doing back stage but rehearsals are 4x a week from now until December and there is no way he can manage that and work. He explained the dilemma to the director and she has made a plan which means that he only has to do one rehearsal a week at least until a week or two before. It is only a small part but he is delighted.

@NoHaudinMaWheest how exciting! It is lovely DS’s drama group is so inclusive. Of course, it should be the way. As we all know, too often it isn’t, and it is refreshing to read someone willing to work with what DS can manage to make it work.