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.

Everybody does @roaringdragon !

@Lougle it is heartbreaking how DD1 has been let down time and again by multiple professionals across many agencies and as a result, you and the rest of the family have been let down too.

Do you at least have an ongoing award for DD1?

I am glad this is an understanding corner of MN. On the main boards, I would be rounded on by some posters for having 4 DC on PIP.

We've been talking about adult life quite a bit what with the inheritance. We think DS would get PIP as he gets DLA but DD wouldn't. But it's hard to say what will happen between now and adulthood for her. Being quite immature for their age is typical of their profile.

@roaringdragon I saw your post for another DC about hospital appointments. It's good you can give such practical advice. Until our recent improvement - and it's only been about a month - we were wondering if surgery for epilepsy was in DS future. It's really helpful to have someone who has gone before (though different conditions).

@drspouse you shouldn’t have a problem getting PIP for DS. Although I know of some shocking cases who have been forced to appeal. From what you post, you could well make a case for DD. That is, if PIP even exists by the time your DD is 16.

I’m pleased to hear your DS’s epilepsy is more under control recently. Long may it continue. The thought you could be heading towards surgery must be worrying (understatement!) for you. Having DC with medical conditions adds a level of stress others don’t realise, doesn’t it?

Thanks. I could have continued posting about what makes hospital admissions easier, but I thought I would bore the OP of the other thread if I made the post any longer.

@roaringdragon no, March 2028.

@drspouse it's so good that you've seen improvement.

Do any of you get an imposter syndrome? I watched 'Love you to Death' a couple of days ago and thought "What if I'm that woman?" What if my children don't have difficulties? What if I really am making it up, exaggerating, etc? It's all so exhausting.

DD1 woke me up this morning to ask for breakfast. She woke me up by walking in the door, then I heard her hesitant foot shuffling as she battled with whether to wait or to wake me. Impulse won, but I told her she had to wait for breakfast. Then I needed the loo and on the way past went to her room. 1 pain au chocolat, 2 toasting waffles, and a chocolate pancake had made their way to her room in the intervening 10 minutes.

DD3 and I had a horrible row about how awful living in our house is today. I find it really hard to draw a line between allowing her to have her feelings, but not having to listen to her tell me how much she hates living here, hates being in the same house with her sister, etc. I can cope with 'it's all really difficult' but not 'this is the worse house ever.'

@roaringdragon No, I did realise spilling hot cocoa wasn’t serious in this case; but it’s one of those things that could be. We’ve heard from DD2’s ex, that some patients don’t realise how serious their condition is!

@Lougle I get that from my DD too (and we are also awful parents who she hates) but it's more age appropriate. However, I guess it's also age appropriate for older teens/young adults even without neuro stuff in the mix.
We travel home today but have a train journey and a mooch around a city before our flight. I have not written my mum's eulogy. I don't really want to for various reasons!

Yes, we’ve had that too from DD2 over DD1 - for instance, complaining that our family life was “chaotic”, because we postponed a trip to a theme park, as DD1 had a tonic clonic and needed to sleep for 3 hours afterwards!

Generally, we lived far more in a routine, because DD1’s SALT told me, we needed to; and a much tidier house; than DD2 does now! She has the most chaotic life of anyone I know!

It's hard when they don't see the amount of effort that goes in, isn't it?

Skylight update: it has been one of the most useful purchases I've ever made. DD1 found it tricky that some of her tasks were bedtime tasks, so upstairs, and she had to either come back downstairs (tired and painful) to tick them off, or let us do it, but then she didn't get the congratulations message. Plus, if she was in her room she couldn't see the calendar, so kept asking us. So we have put a smaller Skylight in her room which mirrors the one in the hall.

DD2 asked to buy a smaller Skylight for her room, and we haven't mirrored it, so she only has her events and tasks on her Skylight, but still has access to the calendars if she wants them.

The Skylight Plus subscription (£60 per year) can be used across all 3 Skylight devices and by anyone we invite to manage the calendars, so that's pretty cool.

Thinking of you, @roaringdragon , you could give access to the PAs so they could add to lists, etc., when they're doing things.

I have the impression @Lougle that your DD3 is trying to become independent (learning to drive, getting a job, meeting her friend) and her believing life will be better may be part of what's motivating her to try and move forward although its very hard to hear when you are doing everything you can. Its probably just she sees DD1 is struggling, DD2 is struggling and you and DH are run ragged doing everything you can to care for everyone and do the house but often children only see it from their point of view and all she may see is I want fun and this isn't. My DD went through a phase like that but it was the start of her really high achieving, which started with a job at 16, it seemed to motivate her and now she's through it and polite and lovely again.

@Lougle good luck to DD2 today.

It’s hard when DC can’t rationally see the whole picture. DD3 doesn’t see all the things you do for her, including things you wouldn’t need to do for a NT teen. Would DD3 speak to anyone like Sibs?

1 pain au chocolat, 2 toasting waffles, and a chocolate pancake had made their way to her room in the intervening 10 minutes.

It is absolutely not funny, but I did smile at this. Impulsivity won the battle today.

It is brilliant the skylights are working. As much as I like the idea of the skylights, I’m not sure I can justify the cost at the moment.

I haven’t watched the programme. It would be a difficult watch and I don’t think I have the headspace to watch it at the moment.

@drspouse BTW, when you come to claim PIP for DS, make sure you read some information specifically about PIP for people with epilepsy. There is some case law involving seizures, the majority of the time criteria and the safely criteria. With seizures, you don’t have to have seizures on the majority of days in order to satisfy a descriptor. Instead it is possibility of harm that is considered even if seizures are on less than 50% of the time.

@roaringdragon it is funny, afterwards. Today she came to me with a somber voice and said "Remove stars". When I asked why, she pointed to a pan of salted caramel and said "I couldn't resist the impulse 🥺" When I looked in the pan, there was a neat gouge from a spoon 🤣🤣

@Violasilkie I think that's partly true but I think also that DD1 creates a demand in DD3's mind because she's either upset that she's not getting something she wants, asking for something, or trying to be really 'good' so she's asking DD3 if she's ok, telling her that she's just popping into the loo, or telling her that she hopes she has had or will have a good day, etc.

@roaringdragon yes, I can imagine that there are so many competing demands on funds. We paid for the hall Skylight because I really wasn't sure if it would just be an expensive screen, but I've used PIP to buy DD1's and DD2's.

My worry is the skylight is something I could do with iPad which we already have. I’m also distracted by a Dec for learning languages which might be fun. We actually have a big chunk because ds has missed so many activities this year and summer is often cheaper for us anyway. So it’s not that I can’t buy them more what’s the best use of the cash.

@Lougle honestly it makes me cry when my dc who does the whole my life is ruined by ds rant lets loose. Worse because much of it is untrue and … well.. I did my best in a very tough situation. It hurts that there is no recognition of how much we do do to try to limit the impact on all. I think there’s a lot on tik tok etc about glass children etc and teens are easily lead.

@Zzzzzs it is a knife that twists, isn't it? None of us would make the choices we make daily willingly. It would be so nice to be able to make choices that don't sacrifice one child over the other.

In terms of Skylight, I'm not trying to sell it, honestly! You might like to try Mango - it's got a free trial and can use any device as the display.

I've just read the update on the case of FHR. The judge has ordered withdrawal of food and fluids. Such sadness in these situations.

^https://www.judiciary.uk/wp-content/uploads/2026/08/COP-FHR-Final-Approved-Judgment-for-hand-down.pdf^

I was glad to see that the judge has included that he should receive his palliative care at home.

Well I’ve sent the forms back so ds can start his new meds once that’s through. He had a terror yesterday and ran straight out of the house. (Into the garden but still!). I’m rethinking how we manage things a bit.

Shall we talk about fantasy support and how things could look if we chose how the money was spent? I’m so tired of the RL set up. It’s just such a waste of time in so many ways.

@Zzzzzs If we could get respite two nights a week, where we live, DD1 wouldn’t be in a care home costing over £250k pa! However, the LA has closed half the respite centres in its infinite wisdom; and they wouldn’t have been able to cope with her epilepsy anyway. That’s three of us in our small town, with DC costing £750k I know of - they could run a respite medical centre for that a year, for far more than 3 people!

@LathkillDale thats exactly the sort of thinking we need planning support.

Its SO frustrating that things could be better for whole families, and cost less.

I'd settle for a smooth supply of meds right now. I emailed the LD team 4 days ago to remind the psych about DD1's Concerta. I've tried phoning the LD team. I've tried phoning the LD nurse. She runs out on Friday.

DD2 did well yesterday, although she was exhausted. In bed by 7pm and slept until 8.15am, when we woke her. She had a panic and was sobbing that she couldn't do it, but I got her there. She messaged at 11.45 to say that she wanted to come home. She was really hot and they are handling insects later, which is a bit boring. I offered her 3 stars to stay, so she's giving it a go. She needs overall attendance of 80% this year to be able to progress and if she gets ill that will soon eat that up, so she really needs to try to stay.

I told our MP that not long ago, at a local carers’ meeting. She said, she’d bring it up with the LA; she wasn’t at all interested though, when I said carers can’t be expected to give up a full time job, and live on fresh air (ie carers’ allowance) to care for a relative!

@Lougle I totally agree on the meds flow. It’s exhausting and saps the life out of me. Well done dd2. You are quite right, save that 20% for winter lurgies.

@LathkillDale I don’t understand the funding enough really but I often think I’m shirking by not engaging and pushing for improvement. I’m not a fan of the no decisions unless we are part of it vibe really as I never think ds is well represented in those discussions BUT I often think if we provided a neatly tied up and presented package that saved people from having quite such abysmal support and transparently saved money someone might go for it. (especially if we let it be their idea🤣🤣🤣)