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.

@Fififizz Threads on this board delete after 90 days which helps with the sharing and they also don't appear in active threads. Though its obviously still public.

roaringdragon I hope the hand heals up quickly and DS1 disregulation settles.

lougle Friday night in A&E again😧 I hope it is more useful than last week.

Violasilkie good that you are moving forward with the laundry room. I am sure that having a separate room will make life much easier.

Fifififizz It seems that your Ds is coping with quite a major change. Of course what most people don't see is the effect of managing that on you.
I am older than most (everyone?) on here. I am technically retirement age but that is obviously far from the truth.

@Fififizz I’m glad college went OK today. It is good the school recognise the toll it takes on DS - everyone on this thread recognises the toll it takes on you. I hope the weekend allows DC to decompress.

@NoHaudinMaWheest how is DD’s burn?

@Zzzzzs I’m glad DS has perked up a bit, but sorry you aren’t feeling well.

I second Lapland. DS1 wasn’t so keen, too cold/snowy, but the others enjoyed it. If DS would like a train trip, what about an overnight sleeper train? Or steam train? Would DS like a visit to a ninja warrior activity places? Tobogganing in Wales. Island hopping in Scotland. Surfing. A stay in a lodge with an overnight wildlife/animal experience.

Thanks alll Annoyingly, while a bite would still have hurt a bit, it wouldn’t have hurt as much because I had a bite sleeve on. I was strapping DS1 into his carseat and he regularly bites, hits, kicks and headbutts when we do that, so I always bite sleeves when doing it.

roaringdragon that is annoying about the bite sleeve.

Thanks Dd's burns are healing well. I think one might scar - ironically the one we thought was least serious.

@Lougle

I do hope you’ve been seen now and things have been sorted out.

@Violasilkie

I’m sorry things have been so difficult for both you and your son. I’m glad your health has returned and you have a lovely, supportive DP. Because of my thyroid and autoimmune problems I’m on and off trying to educate myself about hormonal health and trying to improve things naturally too now as well.

@NoHaudinMaWheest

Thanks. No, they don’t see the toll it takes on us. Social care didn’t see anything needing specific support despite having police involvement, and feeling it necessary to refer me to a DV charity to go on a course! I did have early help for a bit but that wasn’t any help really. I was too busy battling on the SEND education side of things to tackle the lack of social care support.

I’m pretty mature myself and not that far off retirement age. In my head I assumed I was at some point going to return to work and resume a professional career. That didn’t happen and it feels too late now. I have found parenthood a perpetual struggle if I’m honest.

Sorry to hear about DD’s burn. Clinical grade Manuka honey can be helpful with healing/scars.

@Zzzzzs

I hope you feel better soon.

@JumpersFluffy

I don’t think I said hello and thank you for the welcome. This thread moves on quickly.

@roaringdragon

Thank you. Yes, let’s hope so and that we all get a chance to decompress. I’m not sleeping, hence the late post. I find change challenging but equally I’m so very tired and feeling flattened by everything. Constantly supporting without filling my own cup has left me completely flat and empty. I feel a bit detached and like I have no dopamine in my system.

I’m paranoid I haven’t mentioned anyone who’s mentioned me. Apologies if I haven’t. I’ll get up to speed with the thread soon.

@Fififizz you don’t need to individually reply and no posters will be upset if they are missed off. Lovely to have you here in the pub. Post as little or as often as you like. As for working, I have just returned after many years unable to, don’t rule it out if that’s what you want/need.

I have been thinking about the child that died and his family and other people that love him. Essentially it’s the very thing we all do, trying to keep our kids alive. That is a gosling gone. That boy is in my mind because whatever his difficulties were he had a hard and short life.

@roaringdragon Sorry to hear about your hand. Life is hard enough with disabled DC; harder still when injured!

@Lougle sorry to hear DD ended up in A & E. Did anything come of it, this time?

@PurringTiger Hopefully, the child did get some enjoyment out of their brief life, although it’s still devastating for the parents.

@Zzzzzs Could it be Covid? It’s supposed to be more like a cold or flu now in the UK?

@NoHaudinMaWheest It’s good DD’s burn is healing. Burns are so painful. I don’t know how old you are, but I do get the state pension, although DH and I both work part time as well.

Good luck to all of you with DC in the next stage of their education.

As DD1 was in specialist residential schools, we didn’t seem to have the problems many of you have had. The provision was just there; and they understood DD1 within their specialism.

@PurringTiger

Thank you. It just seems rude not to acknowledge posts that have kindly offered support but I know this is a very supportive place anyway and everyone understands.

Your gosling thought has made me teary. Yes, exactly, another precious gosling who’s now gone. DC discovered the trains were being cancelled yesterday as someone had been hit by a train. I think they were a bit shocked over and above the unfortunate impact on their own journey back. I couldn’t help feeling that’s another poor person who just didn’t make it in this difficult world. It happens far too frequently, I feel dreadfully sorry for the families impacted and the train driver too.

@Fififizz these threads move fast and if everyone expected an individual reply from everyone else, it can get really overwhelming if you've taken a break for a day or two. So just post as you see fit - nobody is monitoring.

@LathkillDale they took bloods which were better. Generalised tenderness. The ACP introduced himself scantly so I said "And what it an ACP?" He started to explain what an ACP was to me, and I said "I know what an ACP is, but you didn't explain to DD2, who doesn't know." He then started to explain and finished with "Like a doctor but a different training path...." I sucked my teeth a little because they're not allowed to imply that they are medically trained, but I let it go.

He didn't believe me at first when I said that nobody examined her last time. Then he looked at the clinical notes and it said "On examination: Patient sat in bed." I translated for him: "Patient was alive and breathing." He chuckled and shook his head. I also pointed out that they gave no safety netting advice.

Anyway, bloods have improved a little. ALT now down to 32, CRP holding at 19 down from 20. The ANP at the surgery felt she was Murphy's positive and had signs of cholecystitis, but he didn't find the same, and her fever had reduced. He seems to think that she should have been seen by now by the upper GI surgeons because the Gastro Consultant wrote that he would refer her in February. So he's going to refer to SAU to say she's had two admissions in a fortnight and they need to follow up. He gave us a short supply of 30/500 cocodamol.

Honestly, the best thing is for DD2 not to be in hospital if avoidable, because I have to stay, the nurses don't like that, and then I have to get stern and say "if I go, she goes", then they grumpily agree to me sleeping on the floor. It's a sharp contrast to DD1, where they only agree to admit her if I stay and use their "pleeeasee" voice as they say it!

@Lougle I’m pleased you are home. If you need an admission with DD2 in the future, I would raise how you are treated. You are just as much a carer for DD2 as you are for DD1. You should not be treated so poorly or left to sleep on the floor.

Like a doctor but a different training path

@NoHaudinMaWheest I’m glad DD’s burns are healing well.

@Fififizz don’t feel you have to reply to everyone all the time. Don’t feel you have to keep up if the thread moves too fast for you. You can just jump in wherever. I hope the train incident doesn’t throw DS too much. The poor person who felt they had no other option and poor driver who has to live with what happened. Devastating for all.

@PurringTiger a child’s death is like no other.

@LathkillDale I think it is less about your DD being in residential schools and more about time. The SEN landscape very is different to even a few years ago. Far more hostile. Far more adversarial. Look at the demand for SENDIST. They are inundated. Oral HDs are being listed for Spring 2028. Look at the demand for pre-action letters. It has never been so difficult to find someone with a legal aid contract with capacity to take on the case. LAs have become hardened to JR threats. The threat doesn’t hold to power it once did. Look at the number of LGO cases and how the LGO won’t look at circumstances they previously have done.

My hand is a minor injury, really. Annoying and an inconvenience, but not serious.

@Lougle glad bloods have improved. I had to google ACP and one of the answers was Aluminium Composite Panel, can we be sure that the ACP wasn’t an aluminium composite panel.

Hold the front page!!! It’s been 9 years since DD has been in any form of transport no trains, cars, buses etc not once. I arrive home to be casually told that DH and DD went for a drive.

PurringTiger That is such great news and especially that it happened when you were away so you know that it was ok for you to go and recuperate.

Oh they are both so thrilled to have done a thing together. They wanted to surprise me. Shock is the word I would have used 😀

I arrive home to be casually told that DH and DD went for a drive.

Hurrah! Your DD is on a roll, @PurringTiger.

@PurringTiger shut the barn door and turn the key! What on earth is going on with that girl??

In dog training there is a lot of talk about 'latent learning' - the concept that dogs store information and process it over time, then it all slots together, so they seem to make no progress then suddenly they're 'there'. I feel like DD2 is like that, and I wonder if your darling girl is like that, too?

It's almost as if you just have to give space for her to grow into, and you do it so very, very well.

Thanks for sharing my joy! I don’t know what’s happening, but it is happening rapidly.

Glad DDs burns are healing well @NoHaudinMaWheest

Thanks @Fififizz Please don't worry about replying to everyone, we often waffle on at a rapid rate, or at least I do. I am used to talking to myself at home as DD is away at uni, DS is non verbal and DH is very hard of hearing and will not wear his hearing aid, he appears to listen well but often answers different questions to one asked.

Great news about the drive @PurringTiger

More work on laundry room and hopefully DSs bathroom today though DH is still not out of bed.

@Violasilkie that made me chuckle as DH often answers a different question to the one that is asked and he is not hard of hearing. Have you started thinking about Christmas yet? I’m buying tiny things for the advent already. Will you put a tiny tree in the new shed?

@PurringTiger That's very organised of you. We have DDs 21st before Christmas so not really planning Christmas yet. In theory we get new shed end of October but that date is subject to change to later. Then we currently think as long as money available we will get electrics installed and do insulation ourselves weather permitting as well. Then maybe paint the inside wood lining. Though will see how it goes, from conversation - well me talking to DS - he seemed fine with new shed but just wants ownership asap. I think what he would most like would be electrics adding and then our small freezer moving full of ice cream. I don't think he's that keen on us painting, insulation or decorations. Though he would appreciate it when its painted. Decorations like fairy lights last year he threw out but he seemed to love the rug, small cabinet decorated with flowers and the big cushions. Beanbag chair was kept but not used, the cat has adopted that but it may have been a space issue before so may retry that, cat permitting. He used to love our little Christmas tree but see what mood he is in. He loves when work is finished and it motivates him to do more things but he doesn't like when work is being done though if we pre warn he's fine as then he moves elsewhere.

@roaringdragon Imo, I was lucky. DD1 got a different SW in FE college. He had been third from the top in SS, but took a step back after illness. He told me once, he preferred to talk to me, than have their legal department talk to my lawyers. I had had several attempts at JR over social care at that time. I got the feeling, if he asked for provisions for DD1, he got them! He told me DD1 had the most severe epilepsy in our district.

At that time, FE colleges were all about three year courses. SS asked if DD1 could have a fourth year there, even though I’d said no - it was all I could do to get DD1 to finish her third year, with a big bribe!

I also think, he would have agreed whatever specialist epilepsy placement I wanted after FE college, but by then NHS CHC funding had been agreed, so we were dealing with the CCG instead. (After a two battle to find out from the Sec of State for Health then NHS England, which CCG was responsible for DD!)

DS has got a paper hearing date mid Oct - Nov over the refusal to assess.

@LathkillDale RtA appeals run on a different timetable to RtI and content/placement appeals. Unless there is a pressing need for an oral hearing, RtA appeals are heard on the papers, so are much, much quicker. Meanwhile (non-expedited) RtI and content appeals are being listed for Spring 2028, and getting later by the day.

I am not looking forward to telling DS!

@roaringdragon

** I think it is less about your DD being in residential schools and more about time. The SEN landscape very is different to even a few years ago. Far more hostile. Far more adversarial. Look at the demand for SENDIST. They are inundated. Oral HDs are being listed for Spring 2028. Look at the demand for pre-action letters. It has never been so difficult to find someone with a legal aid contract with capacity to take on the case. LAs have become hardened to JR threats. The threat doesn’t hold to power it once did. Look at the number of LGO cases and how the LGO won’t look at circumstances they previously have done.

This is so validating to read and one hundred percent our experience. It’s a very hostile and difficult landscape. Even the hard won specialist placement has been an ongoing issue. They’re up against it all in their own ways and of course it massively impacts things.

I can't see how it can improve. Even if every decision went against them, think of the savings in having a pending tribunal rather than having to assess/provide.

A surgeon phoned re. DD2. They want her to go on the gallstones diet. So Gastro want DD1 on the FODMAP, once the dietician is on board. The upper GI want DD2 on the gallstone diet, and DD3 is vegetarian. Perhaps we should just eat a lettuce leaf once a day.