Join us in the Goose and Carrot Pub thread.

[ExistingonCoffee]

A thread for all who have DC with SN. The thread is deleted and 90 days and doesn’t show in active. The fire is on and the bar is well stocked.

@Lougle you don’t need to fund it.

It would be social care &/or the ICB depending on the funding mechanism.

Depending on the type of placement the rent may be funded separately via UC or housing benefit (rent for some specialist placements is still funded by housing benefit).

Similarly, depending on the type of placement, some benefits may stop, but for other types of placements, they continue.

But she would only get the shared bedroom rate of UC, wouldn't she, because she's young?

Its obvious you love all your girls so much @Lougle. I could be wrong but I suspect DD1 is jealous of DD2 and DD3 as they can do more than her especially as they are younger. I think the meds maybe causing the hunger issues - I would discuss everything with the psychiatrist and see what they think and if they have any suggestions. I think more input needs to come from health rather than a NMW carer from social care. Its always very hard to know what goes on in someone else's head and at least she is telling you her thoughts. I would write them all down in a diary (noting if anything else is happening in the family / any possible triggers) and pass to health. I think if DD2 and DD3 can be supported to be independent then it would be more manageable at home but obviously that will take a few years. Are you having CETRs? All the meetings are a pain but sometimes they put pressure on and they do stop the pass the problem on to another agency issue as they are there together.

@Lougle turns out we don’t have any money either for independent living care, even though we have money. The sums involved are brutal. The lawyer did talk to me about CHC and social care, I didn’t even know CHC was a thing.

No, DD1 wouldn’t.

Claimants under 35 in receipt of daily living PIP get the 1 bed rate. It is one of the exceptions to the shared accommodation rule.

DD1 could be eligible for the 2 bed rate because she needs a carer overnight.

If the placement was a council or HA place, the housing element would be the full rent, assuming she isn’t in a 3+ bed which would be unlikely, rather than based on the LHA rate.

And depending on the placement, it may be housing benefit rather than UC’s housing element.

@ZairWazAnOldLady I’m ashamed to say that the growth/consequences cycle has left me enabling DD and not doing the right thing for her at times. The memory of the big day at the mall will stay with you and DS and I hope you both find the space and right time to give it another go.

I think very, very few people can afford to fund care for a disabled child/adult. It is why the cries of people saying parents should plan better is ludicrous. We couldn’t afford anywhere near the level of support DSs need.

DS1 (not 18 yet) is in receipt of children’s continuing care funding.

@ExistingonCoffee the lawyer was also astounded that it’s just me and DH. Being told that our finances and headcount are not sustainable going forward was an upsetting truth.

Just to clarify this post because I know I mentioned it my post at 22:24 but this post quoted could be misleading, the accommodation costs of some placements are directly funded by social care &/or the ICB. It is only some placements which have rent funded separately via UC or HB.

It is hard to accept you can’t do everything yourself forever more.

@Lougle i guess what I’m suggesting is that there will be a degree of care needed for DD1 in the future is there a way forward through this crisis that includes improved health and launching. I am not a brave goose and I’m aware that launching my DD will not be something I will do early enough and that will be to her detriment. So I’m really a bit off suggesting that you might consider it. Natural instinct is to keep DD1 very close as she is not herself.

I think you are exhausted @Lougle and nobody makes good choices when they are frazzled. Dd1 sounds so like ds in some ways it’s uncanny. I know you say she is hungry all the time (we’ve had AEDs with that side effect so I have an idea of what you are describing), can I ask a question? What is she like if you let her eat more? I only ask because I as you know have a large family and some cope better with hunger or sleeplessness or anxiety than others. Could it be that feeling hungry is just unbearable for her? That the nagging need and the feelings of being denied are just too much? It’s a problem we have in other areas with ds. He cannot cope at all with some emotions and no amount of leading him will help really.
if that was contributing then it can be addressed.

@ZairWazAnOldLady the hunger is a real issue but she's put on 10kg this year and is almost obese. If we had let her eat as she wanted to, that would almost certainly have been 20kg. It is all she talks about from the minute she wakes to the moment she sleeps. With her ED history, a diet could tip her the other way. At least she's blaming the psychiatrist for me stopping her from eating whatever she wants. She was lamenting furiously to the psychologist about stupid S going on about diabetes and making Mum stop her from eating everything!

I don’t think, she is feeling better what with the pain, lack of sleep and drowsiness from the painkillers; but she is at least eating the hospital food - when she hadn’t eaten anything except OH’s cooked food for months, during the pregnancy. She is also drinking water out of plastic bottles, which apparently was unthinkable before! (Microplastics) We’d barely seen her for months either, as we were “contaminated”, because we have cats.

Yes I understand the impact of weight bc snd it’s particularly difficulties with AEDs. What I wondered was if the escalation in challenges with her MH was impacted by the hunger particularly as she feels it so overwhelmingly. We all have different levels of tolerance for discomfort and are triggered by different things. For many of our children that’s far more pronounced. I’m not suggesting if it’s the case for dd1 that you let her eat everything in sight. I’m suggesting that if calm can be reached by being “full” then it could be a way of getting her some peace and if it’s really effective then perhaps a switch in meds or an additional medication to reduce hunger could be very effective.
Would she be open to taking more exercise? That can really help both reducing the hunger, burning excess calories and metabolising the meds.

Supported living is the default choice by our LA here, for vulnerable working age adults needing care - a council flat or bungalow (for people like DD1).

DD1 has had NHS CHC funding since leaving college, so I don’t know much about what SS do, except for their official policies on the website.

We looked at a Camphill Community for DD1 - it was fantastic. We didn’t think they would have been able to cope with DD1’s epilepsy, but apart from that, she would have been very happy there.

As for hunger on AEDs, DD1 was always hungry from the day she was born. She didn’t get much food in the last 6 weeks of the pregnancy - she was 5lbs 8 oz at birth compared to DD2 at 7 lbs 4 oz. She likes good food; but would eat any amount of junk food, if we let her. Her child psychotherapist told me, she’d never have an eating disorder. She’s not up to things like university, a job, long term relationships or children; but food is a great pleasure in her life.

How much do they eat for emotional reasons rather than genuine hunger?

@Lougle You've probably done all this already but would see if psychiatrist can do anything about the meds to help with hunger issues, some meds seem to be really bad for this but there may be a way round. If not drink water, fruit and raw veg (DS its crunchy veg radish, raw carrots, raw brocolli (might be alone on that one), celery might be worth a try though I hate it and not tried with DS) if she will eat those - its horrible feeling hungry but so difficult if she is putting on weight at that rate and ED. DS is the opposite and eats a lot but stays thin as a rake though I think that's the 1kg of fruit a day diet.

Hopefully gardening today.

@Lougle I also find it can help to analyse options in writing like benefits / costs and risks / unknown with all the options. Or lists of what works and what doesn't. Or sometimes breaking it into smaller issues like hunger would be one and if you can find a solution to a smaller issue then its one thing off the list. I am quite an analyser as personality though. I used this when they gave me a choice of chemo drugs, all the choices are bad but its which is the least bad balancing success rates. And sometimes the situation you are in means that all choices are difficult and there are none you would make as a preference and its is the difficult choice worth the end result, how likely is the promised end result and what does the alternative look like.

Just done nearly 4 hours in the garden with DH - exhausted but got a lot done and lovely to see all the bulbs and the final path is 2/3rds done so just one more time next weekend and that will be done. DS was in the garden shed under a fleece duvet with his ipad and managed to say a few things to him. I only got one huff and that was after I had said to be careful about meeting people online and after the huff I said I know you know that but I don't want anything bad to happen and he was fine again. Rest he just listened to with no reaction.

Long and tiring day as I was out yesterday and up early and then today got woken up by my early alarm which I forgot to change. But DS has tried putting his own duvet in its cover (not completely successful but I sympathise) and I had a long flute practice session with DD with several episodes of reeling and writhing and fainting in coils but a longer session meant she made good progress.

@Squirrelsandhedgehogs 1 huff sounds like a win, and it shows he definitely listens and processes it all.

@drspouse well done for persevering with the flute.

I commented that DD1 hadn't seemed to want to practice driving this week and she said 'I'm prioritising school'. That's something she has never said since she was 4, so I'm really pleased. She's seeming quite motivated by exploring the possibility of an animal care course at a college. The traditional college for animal care in our area has been quite off-putting, but this college (although not a zoo like the other college, so less animals) has quite a lot of information on its site about SEN support. I've sent a preliminary email, but will phone tomorrow. I've realised that DD2 will only get what she needs if I arrange it.

DD3 and DH have been clearing an area of the garden to rejig her vegetable planters.

DD1 has been slightly calmer today because she was allowed to spend a gift voucher on Amazon. However, since ordering it she has been pacing a lot and checking the door. Her sense of time isn't terrible, but she just can't get it that orders don't arrive instantly.

I've managed to spend some time doing a wasgij jigsaw puzzle today, which was a nice distraction.

Glad today was a better day for you all @Lougle Yes 1 huff definitely feels quite teenager land. And it was interesting that when I said I had been looking at photos of DS in Australia (2018) he was fine with that and when I said you can always live with us and we will find a way to finance it as you don't cost much fine with that. And when I said we are fine with you having a boyfriend or a girlfriend or neither fine with that. Just not internet safety but I think that was a I am not stupid huff.

Also told him what gardening we were doing and why and asked him if he could manage it to stay off the soil as we need it not compacted and once grass seeds are down they need 3 weeks to start growing otherwise they will die. And he didn't huff. He loves flowers etc. I found fruit peels around the tulips and the silkies were very happy to find 2 part eaten apples and 1 part eaten carrot. They were less impressed with me when I put them in the green bin.

What do you think would happen if you left him a few packets of seeds, a trowel, and a note saying 'these need to go in front of the shed' or something like that? Do you think he'd do it?

Thanks @Lougle He seems to ignore it, I have suggested how he could help before and he doesn't do those things. Though he does use lots of my garden tools but doing what he wants to do and knows is OK to do. Uses a rake (got leaves from shed roof), secateurs (cut ivy we didn't want), screwdriver (maybe unscrewing the shed gutter which is less good), trowel (general digging), hand rake (getting cobwebs), metal dustpan and brush (sweeping up his mud in the shed, also takes his shoes off and leaves them by the shed door). He has repaired a solar dandelion and made a few woodwork repairs. I do buy tools with him in mind, he also uses the gardening gloves I got him. He did take 4 stepping stones and put them in a circle. Though I had to move them today to dig for the new grass. I explained to him what I was doing and why and asked him if he could not go on the grass and stick to paths if possible so grass wouldn't die. Though I added if that was too hard it was OK as he was more important than grass. He does seem to be using the paths more now. The silkies also use them and the pigeons. Its funny seeing all 3 coming down them at once. So a pretty good success rate with buying things and leaving them but no success with can you do this in the garden.