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.

@Zzzzzs it is exhausting living it. I have to say, though, I would take the paperwork any day of the week over the physical work you, @Lougle, @JumpersFluffy and @Violasilkie have been doing to your homes. Patio, erecting a shed/summer house, painting whole houses, sanding doors, etc. are all beyond me now. My body is broken and I am very impressed you all manage it alongside your caring roles.

I’m glad you have had a productive weekend. Don’t do too much too quickly, though. I hope the changes help.

That's interesting to know how long a decision could be, thanks for that @roaringdragon and agree its best to forget about it until you hear @PurringTiger but hope its quick and a good result.

Well done on work @Zzzzzs

DS was in the downstairs bathroom but DH and I cleaned the kitchen and laundry room and I also cleaned upstairs bathroom. DS seems very happy with Waitrose order and has been eating it like its Christmas, he's a beanpole so we are very happy when he eats. He ate almost 2 packets of blackberries, some macarons, steak pie and green beans, some chocolates this evening. I expect the melt in middle chocolate puddings to disappear shortly if they haven't already.

@roaringdragon I've been doing cross stitch the last little while. I'm learning to recognise that when I feel broken I am, and that the only way to fix it is to listen.

I think we've unlocked a bit of DD1 in the last week or two. She's reverted her language and she's started watching cartoons she used to watch as a younger child. I think she's been trying to 'grow up', and the psychologist has been working hard to show her that the real her is ok. I think it's finally coming through. However, she's now asking questions about moving out which reveals her fear of being abandoned. She's been telling me that she's frightened that she won't be able to see the psychologist if she moves, that she won't get Nanny and Grandad visits, that we'll disown her, and that Nanny and Grandad will die. I've told her that the plan is for her to be nearby and that everything will stay the same. I don't think a resi college is going to work, which is a good job as they don't want her!

DD2 is really struggling with the liquid diet. She isn't feeling well and didn't manage college at all last week. I don't think she'll go this week. Surgery is a week Monday, so I'm not going to pressure her. She's telling me different foods she wants to eat after surgery. It's a bit sad.

DD3 was meant to go kayaking with DH, but DH had another commitment. She decided to go on her own, but she got there, was kitted out, etc., then a girl who is in the year below her (age wise, not that she knew her) was chatting to her. She got overwhelmed with the interaction, felt exhausted, then realised that she didn't have the energy to do kayaking, clean her boat, get dry, shower, do her bedding, etc., so she just came home. She's generally quite burned out right now. I had arranged for her to use my uncle's garden as an allotment but she's so exhausted that she doesn't have the energy. She's not coping with any demand right now.

I'm feeling like the kid in the middle of the circle, trying to get the ball as all the other kids pass it around, just out of reach. As soon as DD1 stops complaining of pain, DD2 messages me to say she feels sick/pain/cold hands/no energy, then when she quietens down and DD1 calls out "Oweee" and it all starts again. In the lull, DD3 tells me she's completely overwhelmed, etc.

But the cross stitch doesn't complain, and I smile every time I look at my little bag. It says "Cross stitching. For when you just need to stab something 5000 times." It's 60,564 times for this particular pattern, but I'll forgive it the inaccuracy.

lougle that all sounds utterly exhausting. I am glad the cross stitch helps a bit.

roaringdragon that admin sounds exhausting in a different way.

My body was broken before I even had children. Housework is challenging enough - no way could I manage DIY. But I have great admiration for those of you that do.

DD's renewal went in in April and we still have heard nothing. I phoned about 3 months in so I know it has been received and I know that waiting times have increased massively here but I think I am going to have to do some chasing.

@Lougle I’m glad you have found something for you and carve out time for it amid the relentlessness.

It is lovely to read you have had glimpses of the real DD1 and that she has been able to communicate her thoughts. Yet heartbreaking to read of her fears and knowing she will have been agonising over them for a long time.

I’m sorry DD2 is struggling with the liquid diet. I don’t think missing college is a bad thing. On top of her struggling, there is a lot of viral illness going round; you don’t want her to pick something up that delays the operation.

Although a shame DD3 couldn’t manage kayaking, recognising she had reached her limit is positive.

@NoHaudinMaWheest when SSS took over, part of the reasoning from taking over from DWP was to cut waiting times, from what I hear that hasn’t materialised but I only have a small sample size. Do you think that is true in general?

roaringdragon I only really have a sample size of two. Ds's renewal last year was very quick but I have heard on the news that applications have increased massively recently and that would inevitably slow the whole system down.
Apart from the uncertainty it makes renewing other things difficult. There is a system for extending bus passes which is good and that is what Dd uses most often but her blue badge and rail card are now both out of date.

@roaringdragon I hadn't even considered the fact that she could catch something. I've been so worried about her attendance. Some nurse I am (was!).

@NoHaudinMaWheest you are remarkably resilient. You don't give yourself enough credit. I hope all the systems start to work with renewals, etc.

Honks to all the geese, I am not normally a honky kind of person but it sounds like we all need them now.

DS was talking to his old Beaver leader at the Scout shop yesterday and she was talking about him coming to help out. He's keen, DH thought she meant for when he's older but I'm reluctant to quash it if she meant now and he's keen! I was talking to him about what he could help with and suggested the snacks and he said "or I could help the little guys if they are sad" which was such a lovely thing to say. And then I think about the conversation with the other mum yesterday and I get sad.

I have had a lot of desk work recently and I'm going for a massage on my shoulders tomorrow. Then we have an indoor ski session. DH hurt his leg last time and isn't keen on skiing this time but DD is really upset we don't think she should go to the top on her own.
DS dyspraxia hits him badly when he tries to coordinate his feet to order but somehow he goes up and comes down and vaguely steers, it's like his legs do it without his brain!
DD is a little daredevil and I can see her doing a ski season when she's grown up.

For us the bluebadge is a HUGE help. It was far harder to achieve than any other support ever. Applied, appealed, ombudsman and finally MP. It’s life changing. Now we have it we have been able to do so much more that sometimes when the wind is in the right direction and the stars align we don’t need it! I will be so sad if we ever loose it. Much of the progress we have seen over the last few years balances on the increase in places we can go safely and without getting too tired.

The DIY here is necessary, it allows us to do things we otherwise can’t afford. I confess I am bone tired though and get a weird shaky legs thing as a creak from job to job. You are right it is time to slow down for a bit.

I keep talking/reading about prepping for war/power cuts/disasters etc etc. One of the things they suggest is making sure you have enough medicine to last two weeks. How? Nobody would prescribe that here.

I’m thinking of buying ds a hoover. I’m pretty sure I could spin it into part of a keep your own spaces clean and tidy new regime. I can’t afford to buy it for him though and he won’t engage with my hoover (which would do the job and I’d have to buy something similar as it is light/easy). Does that sound like a crazy plan? Do any of you use things to tuck in the sheets on your bed? Ds’s hands are too floppy, and it’s putting him off trying. Any other good cleaning tidying gadgets to add a little to doing (minimal!) housework would be really interesting.

similarly any ideas on LEGO storage for large amounts of LEGO would be helpful.

@NoHaudinMaWheest it is very frustrating that you don’t have a mechanism for extending the rail pass and blue badge. Could DD have an assessment for a blue badge? Or would an assessment be too much for DD?

@Lougle don’t put yourself down. I completely understand why you had to, but the hospital lost an excellent, compassionate nurse when you resigned.

@drspouse how sweet of your DS.

@Zzzzzs if DS’s own vacuum would help, go for it. Or what about a robot vacuum? We have one. Although DS1 and it can’t be in the same room together. DS1 is scared of it and becomes extremely dysregulated.

We have built in cupboards in the playroom with Really Useful Boxes for Lego. I think my DC are a little unusual on the Lego front. They like to keep the individual sets as individual sets.

I have DS2’s AR meeting this week. It should be straightforward. No amendments needed. I am back at the hospital tomorrow too.

@roaringdragon you just made me cry. Thank you

@Zzzzzs a hoover is a great idea. I agree that the blue badge is so helpful.

@drspouse how lovely that DS could help out. He's a compassionate boy with a big heart, isn't he?

@Violasilkie you're able to fit so many jobs into a day. It's very efficient!

My feet get so cold, it's ridiculous. I can't sleep if I'm cold. DH has added the thicker duvet to my side of the bed (it's a mix and match zipped duvet with 4.5 & 9 tog layers), I'm laying on a blanket, I have a blanket under the duvet. I'm wearing socks. I think I'm going to have to wrap my feet in another blanket. The only trouble is that I then get hot in the night and can't sleep. So I spend all night putting covers on and off.

lougle thank you and I agree with roaringdragon on the nursing front.
Dd gets very cold feet. She finds washing them in a bowl of water before going to bed helps and she has an electric blanket between the sheet and duvet to warm the bed up first. She doesn't sleep with it in the bed as she finds it too uncomfortable even under the sheet.

We don't actually use the blue badge a lot as we don't have a car. I could have paid for a 6 month extension but it didn't seem worth paying £20 for.

drspouse It would be great if Ds can help at Beavers. My Ds doing voluntary work has made an enormous difference to his independence and resilience.

@Zzzzzs Wicked Brick have bespoke cases for sets of big displayed Lego. If not Ikea with glass door fronts works for smaller sets. For the mixed Lego it’s plastic storage boxes or drawstring bags on hooks for higher up storage. Best item in my house and DM’s is not a hoover but a carpet sweeper, no cords and no noise also light weight (also a lot cheaper).

@Lougle you have all the qualities of a wonderful nurse.

@roaringdragon All that admin sounds exhausting; its like a full time job in itself! I keep track of all our expenditure on MS Money; and do the same separately for DD1. We have quite a few bank accounts, left over from when we had the extension - we had separate bank accounts for that; and we are still finishing off with a new upstairs bathroom in a few weeks. I also do DH’s book keeping and accounts, but it’s easy to do it properly from scratch on the accounting software!

I don’t think we are in the same league as you though!

I remember when DD1’s EHC plan was issued, they put something like transport was our responsibility. I wrote to them and pointed out, the tribunal had agreed it was the only placement that could meet her needs, and given certain provisions were specified, which nowhere else could provide, where did they suggest, that was nearer and could meet her needs? They decided that was a mistake!

While big companies have internal audit departments (which is really boring), it is always necessary to balance the cost of the audit with the client’s means. It’s no use doing a wonderful audit that wipes out the client’s profit for the year! It has to be proportionate to the size of the business. I’d say half termly for one person, running a small business, which is effectively what you are doing, is ludicrous! Whatever your EOTAS budgets, etc are; they are still immaterial compared to the LA’s income and expenditure! (Immaterial to us means too small to bother about)

A private company in England has to have a turnover over £15 million, before it needs a statutory audit, so if HMRC are satisfied with that, what’s it to a LA about you, when I doubt they give you £15 million?

PS - then there’s reputation. Auditing is not like Ofsted, where we can decide not to bother with an audit, because the client does everything perfectly; either they meet the statutory requirements for an audit or they don’t. However, clients are less likely to get an HMRC investigation, if they are with a reputable firm of accountants, who HMRC knows won’t stand for any nonsense.

If, as I assume you do everything by the letter with the EOTAS budgets, then they should be safe to assume the odd audit is enough; and what they are really doing is wasting taxpayers’ money, which would be better spent on front line services! It all sounds very petty!

I'd love to know how much the audit costs them compared to how much they spend on your DSs.

@Lougle I hope you managed some sleep. Are your socks thermal socks? We have had to resort to putting the heating on for DSs.

They decided that was a mistake

Haha. @LathkillDale I bet they did! More like trying to pull a fast one in the hope you wouldn’t challenge them.

It is definitely a lot of work. EOTAS/EOTIS/C isn’t the easy or simple answer some assume it to be. The audits have never found fault and we have a payroll company and EOTAS co-ordinator. @drspouse, I don’t know how much the audits cost my LA (maybe I should do a FOI request to ask how much they spend auditing those with DPs for EOTAS packages) but it will be minute compared to the cost of DS1&3’s packages. Although they are certainly not £15mil.

I had a hospital appointment this morning. Good news. I can switch to oral antibiotics.

@roaringdragon fantastic news about the antibiotics.

No, not thermal. I do have some though, so I'll crack them out.

DD1 was distraught tonight because I'm going out for lunch and cinema with a friend tomorrow, so she's going to Nanny and Grandad. In one sense I think I should cancel, but if I do she'll expect me to cancel everything I ever do (which isn't much!). She said she didn't want to spoil my day but when someone is clinging on to you for dear life and sobbing, it does take the enjoyment out of it. She was refusing to go to bed until she 'knew what was happening' (I.e. was I going to cancel). DH managed to get her into bed in the end. She said I was mean because all she wanted was one more hug, but I'd hugged her lots and she was expecting me to phone the friend and cancel.

@Lougle I have been exactly there (still am on occasion) Do not cancel. DD1 is safe tomorrow. See your friends, you will probably be wrung out but do it. I delayed doing it for too long and life became very small. It’s excruciating watching while they go through the seesaw of anxiety and guilt. Best way is to
make the decision and stick to it.

@Lougle - don’t cancel! You know the saying for carers “Put your own oxygen mask in first!” Ime, it’s the best way to ward off depression - plan activities for yourself, that you enjoy. Otherwise, you don’t exist in your own life and it’s all for other people - and the mind gets worn down.

DD will be fine with her grandparents!

I do plenty for myself but even without clinging/separation anxiety I still don't seem to manage to do anything with friends. I think this is probably down to all my good long term friends being hours away because the others have dropped by the wayside.

I don’t have any local friends really. I have old friends but they consider me Christmas card catch up and maybe a day every year or so while to me they are precious. It probably should be a bigger deal than it is but I’m ok with it. I have lots and lots of family and my own family are very nice.

@Lougle dd1 is safe and loved and you can go out several evenings a week without traumatising her. She is an adult however dear and dramatic and she doesn’t get to have your whole life to fill in hers. You are important too.
Ds is very tired and I can’t work out he’s under the weather, it’s adjusting to sodium evaporate (we doubled last week), it’s cold grotty weather, or he’s down.

in the meantime I am trying to perform a bean transfusion on a beanbag and it is not going well.

@Lougle I hope you made it to lunch and the cinema with your friend.

@Zzzzzs sorry DS is tired. Bean transfusion made me smile.

Hope you made it out to cinema and lunch @Lougle you definitely need time for you.

Good to be able to switch to oral antibiotics @roaringdragon hope it clears up soon.

Car has had second repair and we have her back so have a car again. I cleaned the kitchen including going through the cupboards, the fridge, cleaning the oven and deep cleaning the dishwasher and did the floors in there and the entrance hall. Cleaned the laundry room. We got the cast iron bird brackets I ordered and DH used 3 of them to put up the first oak shelf which we made from worktop we had over and I varnished the shelf. Done more of the PIP form.

Hopefully DSs jacuzzi bath is arriving on Friday but awaiting confirmation and can't book in plumber and electrician until have it confirmed.