The Goose & Carrot Pub

[RedRegular]

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

I am not surprised you are shattered with all that activity and physical activity can burn an awful lot of calories like 200 and hour and more if lifting things. Hope you can get a rest today though it's the hottest day here before going down to 23C tomorrow. I am the same with the duvet. Infact once I phoned the doctor saying was getting night hot flush symptoms and he said could be bedding and I thought yes I have fleece bedding and a thick duvet and it's 26C out. I did at least change to cotton bedding this year pre heat. I've had trouble sleeping ever since chemo though think it's menopause. I do sleep at some point but it's broken. I take anti histamines if need to sleep, the non drowsy ones send me off to sleep quickly.

Thatched shed company have said best to discuss on phone so we will call them later in week. DH is now talking about garden bedroom but needs to be very high spec for building regs and big for garden but thatch looks cute so it's this option for that or ruled out. The price may rule it out but need to get it and then move onto sheds if not. Issue is we want more a summerhouse but they tend to have big windows which DS would hate and doors at the side not the front and flat roofs due to 2.5 metre height rule. We need door at front on right or centre, an apex roof and windows like a house and a specific size and it's making bespoke the only option. The bespoke one we saw only uses 14mm cladding plus ply lining and I am not convinced but DH is but wants the thatched one for a lower price. It's good we measured again as before DH had told me width of slab was 10 foot when it's 12.5 and was imagining a bigger shed than would get.

The thatch company just called us, its getting high sales now, and was trying to persuade us building regs will add a lot to costs and we don't need it but you absolutely do if its ever used to sleep in/ as a bedroom. He said he'd send the architect round but I said could he send a quote first as price may rule it out and he said he would said a quote for with building regs and without. The tree does not seem to be an issue. I could not establish from him what the width of everything is - he just gave me the insulation size difference so normal is 200mm, building regs is 250mm. It can be thatch but there are fire rules. He's going to talk to the architect. He said building regs would mean existing concrete base would need to be removed and new one made to higher standards. It sounds like £££. It'd be interesting to know though but may well be an instant rule out.

@Lougle you operate at a cracking pace every day I expect you burn a lot of calories.

DD is still under her heavy fleece duvet. It’s the right feel and weight.

PIP renewal due in 9 months has anyone got a feel for when the forms might arrive?

Is that the date the award runs out or the start of the renewal period (a year before award end). Our year before starts very soon and I think that's the earliest forms can arrive but is often a few months later. This is one of the issues for us and the youth guarantee scheme if it goes compulsory could mean DS loses all UC as he's not capable of doing it. Thankfully voluntary at the moment. Not sure when that's from.

It used to be 6 months prior, but I think it's a bit variable now, depending on how long the award is, etc.

We always know when it's hot because the dogs choose to lie on the floor like a piece of streaky bacon, rather than the sofa.

@Tulipandmagnolia that's all sounding quite complicated. I think I've lost track of how big you want it to be now? The Posh Shed Company has some very compact house style sheds that can come insulated, etc., but they only use 14mm cladding, which I think is too thin.

In weather like this, I take the duvet out the cover, and just sleep under the cover. However, I never had hot flushes, bar one for about 30 seconds.

DD1 just seems to radiate heat. Even in winter, her hands always feel warm. We stood in front of a machine, which showed how a pit viper perceived us. We were all blue at the extremities - she was cherry red!

DD2 can wear a coat outdoors all the year round. I don’t understand why she doesn’t get hot in the summer, but she says she doesn’t!

@Lougle do you think the ADHD meds could be contributing to your lack of sleep too?

@RedRegular most receive the review form between 7 and 10 months beforehand. Although, from 2nd June, DWP will begin lengthening some existing fixed term awards in response to new legislation.

Saying pool makes it sound grander than it is. It is just one of those you can put up in the summer. We don’t live in a house with a proper swimming pool! Managed to cajole DS1 in for 15 mins first thing this morning.

Yes it is getting like a big project now @Lougle though we are OK with that, its going to be the price and whether we'd stand chance of getting money back on house sale. I think the price will likely rule it out as an option and I only considered it as the sales lady mentioned it. But I am also nosey and would be interested in how its all done, price, rules, difference in spec. The company we visited was very similar to Posh Shed company, its Cosy Sheds, and has a good reputation but it is 14mm. They also prefer 8 foot by 8 foot max but will go up to 10 foot by 8 foot or 10 foot by 6 foot. Its apparently due to the weight and there seems to be rules on transporting looking online. The Cosy Shed company I could understand why their prices where what they are. The thatch one I am sure are excellent quality but am not sure why the price is so high. I thought it was the thatch but they say that adds £1.8k to costs. I suspect they mainly work for giant expensive listed houses with big grounds and very high budgets.

@scoopofmintchocchipicecream pool still sounds great! Is DS1 ok to have aircon on in the same room as him or are you doing the cooling beforehand? Is it possible that after 2 June DD’s PIP will be extended automatically? Or will she still have a review in March?

Ah! I’ve read it. The review will happen it’s just about when due to backlogs.

The ones just being extended I think are over 25s.

For a minute, I imagined your mansion with the luxury pool, spa bubbles and champagne, @scoopofmintchocchipicecream !

I don't know if the meds are affecting sleep. They shouldn't do, because I often don't take the afternoon dose, and if I do it's mid-day, so it's worn off by about 4pm. Possible, though.

@Tulipandmagnolia yes, it sounds like you have so many factors to consider. I think we have a much less considered 'Get something up so that DD1 isn't sitting in the lounge with her carers' approach.

@Tulipandmagnolia it isn’t just over 25s who could have their award lengthened. The Universal Credit, Personal Independence Payment, Jobseeker’s Allowance and Employment and Support Allowance (Decisions and Appeals) (Amendment) Regulations 2026 doesn’t just apply to over 25s.

The change that doesn’t apply to under 25s is the change that came into force in December which lengthens the minimum award period for over 25s.

@RedRegular the award will just be lengthened. Everyone still has a review.

Even those with an ongoing award have light touch reviews.

DS1 hasn’t yet tolerated the aircon on in the same room as him. At the minute, that isn’t a problem. I think it is something we could work on, though.

@Lougle haha. If only!

I have such mixed feelings about all the PIP/UC stuff. In one sense, it petrifies me. In another sense, I get to the point where I shrug my shoulders because the reality is that you could take away every benefit for under 25s and my kids would still be the same as they are. They aren't unable to do life because they get benefits. They get benefits because they are unable to do life.

I get nervous about the future for PIP/UC if I read online and also I know DSs behaviour will not change one bit with benefits removed so it'll be us who will end up having to pay for everything. But I mostly don't think about it, though I do have to consider it now for shed, as we cannot guarantee any benefits from now onwards.

Though a lot does seem to get overturned. I'm not sure what is happening with the Youth Guarantee - we aren't in a listed trial area but last couple of years once a year we've been offered a voluntary one which would be great if DS is capable of but he's not. Originally it seemed to say it was compulsory from 2026 to all on UC including LCWRA who had not been in education or employed for 18 months and were 18 to 21 (being raised to 24?) so that would include DS. Though its daft for people like DS and I don't know what employer would take the £3k they get to employ someone who cannot speak or write and will get hacked off if he can't do things rather than save £3k and employ someone else.

This seems to imply people like DS on LCWRA will be excluded but not sure. I cannot see them having anything like enough work placements though I am concerned they cut benefits even without the placement.

We had a benefit extended once which was great but nobody told us and it was only when I spent an hour on the phone before they answered and I asked I found out. Great but would have been useful to know. Unless we missed a letter.

https://www.gov.uk/government/publications/jobs-guarantee/jobs-guarantee-grant-guidance

@Lougle I am nearly at the point of get anything you can stick up though everything requires planning and listed buildings consent here. I've heard people say Nordic Timber Buildings are good but am getting a bit overwhelmed with sheds. DS also seems to just want the current one and no change. DH reckons it will last another 2-3 years. I also have to be careful not to get one too attractive so he will relocate unless its the expensive one with building regs.

We are in one of the areas where there's a trial of extended help for those with fit notes. I can't remember if it was in my area, but in at least one area they are providing extra physio which struck me as one of the more sensible suggestions. I do know though that even in Ye Olden Days people's ideas about what would help their (physical) conditions varies considerably from what the research suggests, and people are often unwilling to try anything that they don't already think will help (e.g. physio is not just going to the physio As Any Fule No, but some people think it is).

We've just had a strange message about our cleaner. We go through a lady who employs her but the first visit was the manager lady and another cleaner again. I presume a safety check first visit. Then we got this cleaner who was so nice and kind. DS has got used to her coming and will now let her in the downstairs bathroom and just wanders the garden so it works well though is pricey at £60 for 2 hours but we are OK with that as it works with DS.

Last week on day she was due we got an email from manager saying sorry she's ill and sorry for the inconvenience this is causing. It was fine as I had actually cleaned everything night before. Today I get an e-mail saying that cleaner is now unable to work and next week we can have manager and refers to we. I've said yes to it but will miss the old cleaner and wondering what happened. She was maybe 40 and seemed healthy and cheerful so I am very sceptical she's unable to work and had 2 kids and it was school hours.

@Tulipandmagnolia that’s annoying. Perhaps her cut of £60 was too small.

She didn't seem that bothered about money as one time I got DH to offer her a £10 tip and she refused to take it. I do wonder if her and the manager had a disagreement about her being ill. The manager can be very blunt, cleaner was lovely and meek and mild. Its either that or she didn't want to come anymore but she always seemed cheerful and more like she wanted to move in complimenting everything, or someone has meant one of children is no longer in school. Not impossible but not a high risk age and they were both in primary school before. The manager is very bothered about money and sends a if you don't pay today I will charge you £10 a day interest with her bills when I always pay instantly.

DS has been continuing to use Anton for English - when I get him to stop guessing he picks up the content quite quickly - yesterday we did a Year 4 question set on nouns, where each concept has about 7-8 questions. By question 6 or so he's getting them right without additional help, but of course he'll have forgotten it all by the time he comes across the concept again.

He also has been writing most days using Pobble 365 prompts on the Storybird interface. Here's one he wrote two days ago in response to a prompt about an abandoned stadium.

I think the people went away because there could be bad stuff. Maybe there were some big explosions. Now it looks green and overgrown. Its quiet and empty.

Left to himself he would just list the vocabulary words but I got him to say each sentence aloud before writing it. Some days his comprehension seems to be on the floor (yesterday he took about 5 minutes to work out which piece of paper I wanted him to go and get) but some days he gets it more quickly. I have a feeling its epilepsy related because of how it comes and goes but it's not clearly linked to a seizure or absence that day - he can seem fine but it's like talking to a brick wall.

DS could be having sub clinical seizures or epileptic activity. DD1’s consultant neurologist at her specialist FE college rang me up once, after an ambulatory EEG to tell me that’s what happens to DD1 - DD1 can be having a seizure and there is no outward sign of one!

Their educational psychologist also assessed her over a period and wrote a report, saying she’s functioning at a MLD level; but on some days she’s not functioning at all!

Personally, I thought she could be in a state of absence status epilepticus - where her eyes were open, she could respond to questions and she was walking around; but there was nothing going on behind her eyes. We found, if we took her out for a walk, we could distract her out of it. Now, we’d just give her a clobazam as a PRN.

That's interesting actually - we have a referral to the neurologist (finally) and I will ask about those.

I have no experience of the impact of epilepsy @drspouse but regularly DDs anxiety around not getting the “right” answer results in her completely blocked, dysregulated and unable to answer any question that has more than a one word answer. It’s so incredibly frustrating to support as if pushed she can verbally answer me but then refuses or is unable to type an answer - she can write but we found she was more able to type. She understands the concepts and meanings plus She’s had a year of 1:1 English tutoring on gcse level content and can make very short annotations and answer verbally sometimes her tutor but still will not or cannot write sentences to the questions. I have huge concerns she’s not going to be able to take gcse English despite being very academically able. Her autistic mind so so struggles with anything not black / white logical answers so blocks her writing anything. Yet she writes scripts for her YouTube channel beautifully arrhhh I hope you can keep plugging away at it and find what works for him.

Geez it’s so hot I’m trying to work and have now retreated to the coolest room in the house with dog and my laptop but I’m not getting much done.

Very hot here yesterday at 33C but today we had thunder briefly and some rain for 30 mins before its gone back sunny but more like 26C now. Immediately the thunder had taken place I heard our door to the garden open by DS and yes that was DS going out for the thunder and rain. 🤔

Have been sorting finances to try and get everything in best interest rates and cut things DH has subscribed to but doesn't use, there was about £400 of that in things like English Heritage, National Trust and RHS. Well we use RHS but EH and NT we used when the kids came with us and saw everything within about a 3 hour radius and also they make me sad now as I remember DS as he used to be. I'm trying to calculate a potential shed or bedroom fund, though will see what quote comes in for for bedroom, the price may well rule it out. DH seems keen on the idea of the little thatched bedroom house but when I asked him what budget he said up to £20k and we already have the quote for the smaller one without new base and building regs extra, and fees at £25k (well £22.5k plus £600-£1.5k planning and £1k electrics and removal of old shed). We know as a minimum they are building a new base and taking old one out and architects fees and building reg fees plus larger size and higher requirements. Then he said £25k but its obviously going to come in at more. Then he said he would talk to the estate agent. Then he said do you remember that house we visited with the most wonderful summerhouse you could sleep in in the garden why did we not buy that house, we loved the summerhouse bedroom. Hmm, that was as we visited about 20 houses and you rejected every one, many for silly reasons like you only wanted to shop at Waitrose and you wanted one you could walk to.

And I discovered another boring shed fact. Apparently the smaller the shed the lower the cladding you need so a small shed can be 10mm OK, but 10x8 and just above you are best with 15mm to 19mm and log cabins thicker again due to increased pressure from wind and larger structures. DH despite being a structural engineer did not know this but said ah yes that sounds right if I think about it. I googled it as I was getting bewildered by the different cladding levels.

We both miss our lovely cleaner, it was largely to have someone visit the house each week to get DS to have someone not threatening around and she worked perfectly, often talking about chickens, cats and dogs and she was very meek which works best for DS, he hates bossy do it as I say because I have decided its best for you people. Now the mud has improved and we have the paths and lawn done we don't especially need a cleaner but we will see how the new ones go. It maybe she's doing 2 people to introduce a new one. But when the two came before DS would not let them in the downstairs bathroom whereas he would with the nice gentle cleaner. But the 2 were the first visit. I have told DS.