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[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.

@Squirrelsandhedgehogs would the correspondence from SC help? The worker that came round every other week?

@Squirrelsandhedgehogs sorry all drip thoughts. Getting in the list for community dental care (even if DS can’t access home visits yet) I put that in evidence.

@Squirrelsandhedgehogs you should have enough evidence from the keyworker which is still relatively recent evidence. As well as CAMHS letters, you can send the EHCP too. You may not receive the review form in June. Many don’t receive them 12 months before. 6-10 months beforehand is more common. It is just they can send them from 12 months beforehand.

Key worker! That’s the title I was thinking of.

Thanks @HedgehogsAgree Yes we have evidence up to January 2026, the key worker is different to SC but should still count and before that was camhs. Yes he was in hospital when first claimed pip so they should have his diagnosis and Maudsley report. I will likely send again but it's proof at the time you apply I am concerned about. I maybe worrying unnecessarily but would feel safer with an at the time letter saying he can't speak as I have found they often just ignore parents. Though it maybe different as renewal. It might be GP would write a letter for £30 or so, I think they did something last time but they would have to put not seen. They deal with us via phone or messaging. Yes I could look into dentist, he used to love dentists though currently refusing everything. The key worker service might just help but said you need 2 services and have signed off but said could get back in touch.

Thanks @ExistingonCoffee hopefully will be ok. I think given the hospital history common sense would tell you he's not faking all of it but it's just all the press. The EHCP is from 2022 or 2023, they never finish their annual reviews and he refuses everything since hospital. The lady there did say we can get PFA but he doesn't want and they often promise and don't deliver. We are also using a cleaner which I will add. I would like him to have something but he gets hacked off if you suggest anything.

@Squirrelsandhedgehogs DD is 10 months before renewal. It’s a worry isn’t it. £800 this month on healthcare alone and the aircon is not on yet…. Well it went on once. I don’t think either of our children have progressed to the stage of not needing PIP although your DS has made it through to the healing stage at home it would be ridiculous for the assessors to think that he doesn’t qualify.

@Squirrelsandhedgehogs unless the EHCP has been formally ceased, you should still send the EHCP even if it hasn’t been updated since 2022/23. Until it is updated, the current EHCP is the current version even if it hasn’t been updated for a few years.

@HedgehogsAgree people without experience of disability don’t realise how expensive being disabled is.

@ExistingonCoffee the costs never fail to shock me.

Thanks @ExistingonCoffee It's definitely not ceased just inactive. I have got emails re the annual review which never finalised from last year as well.

I thought we didn't spend much on DS but when I added it up it comes to quite a lot though none of it is what people would expect it to be on. It's mainly on things like higher heating costs as he doesn't like boiler, repairing boiler, new bathroom floor and kitchen ceiling, lots of food. I always think these costs will end but now he's just damaged the shed, it's repairable but getting to point of do we give up and buy a nice new one. Suspect we may need a new washing machine before too long and the cleaner we have now is £60 a week for 2 hours. She is brilliant and DS cooperates with her sometimes.

We have so much more to do with preparing turf, have 48 square metres to prepare and need to dig to 20cms then put compost down before turf arrives on Friday to be put down on Saturday. We have done about 8 square metres. DH is away a few days too.

DD is at an all night party for the boat race. Rowing camp soon number 2.

@Squirrelsandhedgehogs I wouldn't worry about the evidence not being recent. You still have the paperwork from his hospital admission and keyworker reports. Then you'll just be able to say that he's still non-verbal, and you'll be able to describe his reaction to, well, anything you say that he doesn't like.

At the end of the form there's a section to explain if he'd find a face to face assessment difficult. I would write that it would be impossible and that it is likely to cause both you and him injury if it was attempted.

Thanks @Lougle We don't have keyworker reports but we do have their visits and some correspondence re visits so fairly happy we are covered for that period. They have always been fine with the not making him leave house, he would just refuse. I have only ever had the one cushion thrown at me (yesterday) it's more property that's at risk but they accept that fine and have photo evidence of past things. It's only once a year or so.

The shed will just be a couple of nails to repair though gutter also needs doing again and don't know whether we go for new shed / summerhouse / garden office. They get very pricey and doubt we would get money back on house sale way market is at the moment. We also need planning permission as listed. That may not be too much of an issue as at back of house and only we can see and would go for traditional look. He would love electrics to use iPad in there. I thînk something like a tiny house he would move in but have to be careful on that re permissions. It's also how long they would last. He does take good care of it but goes on roof which they aren't designed for and also he took part of gutter off which it needs. If I explain to him about gutter he may be careful, did work with lawn. Also need to measure space we have, think current shed is 7 foot by 5 foot roughly and some are much larger and we have big trees so not sure some would fit. The offices seem to be £15k plus possibly £20k which is a lot. Sheds are cheaper and summerhouses a bit cheaper but have a lot of windows which he would not like. Though not sure it's the best use of that money.

I also wonder if we do his downstairs bathroom, take out the washing machine and dryer and put in small room next door and put a bath for him in bathroom. Would need permission but should be fairly straightforward. Would imagine that will be £15k as well. But that would mean he could have a bath straight from garden so would probably stop using upstairs bathroom and trailing mud around house and would give us unlimited access to washing machine and dryer. It's not too bad at the moment. It probably would be a better design for house as well so may add value though a shower would be better for that but he loves baths and want to design it around him. It would also stop flood risk upstairs. Then we have 3rd bedroom project but that is much more complicated re permission and getting someone suitable.

There seem to be around 3 months lead times on sheds which combined with planning permission not sure it's viable this year though could investigate but think we may need to repair existing. I want to finish turf and clearing a small area first. The bathroom project we could use people who did kitchen once get listed buildings consent. DH wasn't keen before but now living room is done makes sense to me though is risky on value add if can't get 3rd bedroom permission. DS is using living room a fair amount and sofa is fine.

@Squirrelsandhedgehogs can you explain to him about cleaning up the mud and show him how you do it? Would he help in that way?

Thanks @drspouse He uses a dustpan and brush and takes his shoes off in shed so he knows how to keep things tidy, it's more he doesn't care with the house or he's in and out so much he doesn't want to remove shoes. The cleaner makes it's more manageable, does 2 hours of our regular cleaning so we just have his bathroom. Hopefully when turf down and better weather will stop. Some of it is strange though like he must pour soil over his toilet all the time and he also enters house via a window and sink sometimes. He is letting us and cleaner clean it now which is a start. I am hoping him seeing it clean will make him appreciate clean more but he seems to love mud. I think if that bathroom had a bath that would help a lot as it's first room he enters and he loves baths. It would not be too disruptive as we use upstairs bathroom.

@Squirrelsandhedgehogs - I send medical reports, which are over 10 years old now, and put on the form

”These reports are still relevant, because there is no known cure for brain abnormality nor epilepsy”

Her consultant neurologist doesn’t write reports every time, he says her saying she has the most severe epilepsy, and needs to live in a specialist centre with on-site medical centre 24/7 and neurology. It’s all been said before, so why would anyone waste their time, by keep repeating it?

I also send a speech and language therapy report, which is ten years old, because it gives her age equivalents for various aspects of language as being about age 2 - 3, and say she has two neurodegenerative conditions, and if anything her language has got worse since then! (It has)

I tell them, she couldn’t possibly attend an appointment in their offices, in case there are stairs; and the stress could precipitate seizures, which is true - she had a seizure the other day, just thinking about her Easter egg. Any change in emotional state, positive or negative can cause seizures! She lives downstairs in our house now, after we had a bedroom and shower room put in the ground floor extension. It’s been a godsend!

I suppose there is the fact also, the ICB agrees the NHS CHC funding every year - they hold an MDT to discuss her, which we attend. They wouldn’t do that, if she were perfectly alright now.

Personally, I think children like ours should get indefinite awards, because they tend to have complex conditions and behaviours, for which there is no known cure at the moment.

So far, touch wood, the DWP has always renewed DD1’s benefits, just on the papers.

@BlueandWhitePorcelain does your DD have an ongoing award with a light touch review? 2 of mine do. From what you describe, DD would meet the criteria for that.

She is still on DLA indefinite award. I don’t know about light touch for the ESA, now Universal Credit. It has always just been decided on the papers - she’s never undergone a face to face assessment. The last DOLs assessment was a “light touch”, although they have her mental capacity assessed every year by a consultant psychiatrist, and he writes in black and white the extent of her cognitive problems - ie no mental capacity!

However, as it’s been decided she is to stay in the specialist epilepsy centre for life, I can’t see how anyone could say, she doesn’t qualify for NHS CHC funding, DLA/PIP, Universal Credit whatever?

Thanks @BlueandWhitePorcelain Your DD1s awards sound really safe. In DSs case its not clear if its permanent or he will ever make a full recovery. He's made a partial recovery but incredibly slowly so I plan on lifelong to some degree. His condition historically was always given a schizophrenia diagnosis but they have stopped that and just called it autistic catatonia with depression / anxiety but said the depression / anxiety is just levels get with asd. I am OK with its being reviewed every few years as it could be one day he does get better though the reviews are scary and the possibility of lifelong is worrying in conjunction with him refusing everything and currently they view him as having capacity to refuse everything.

That combination can potentially cause issues though we are happy to have him home and care for him but we are responsible for his health, house clean, his teeth and house and garden repairs, his eating and he does not communicate problems unless he is angry about something which isn't that often. But in hospital they had the same so it was no better and his teeth they cut off his water so they didn't get cleaned whole time in there. We will just see how things go but if it does look like its lifelong we will need to find a solution to him refusing everything. He is starting to cooperate with the cleaner so there is a tiny bit of hope but he's always been incredibly stubborn, school said he was the most stubborn child they had known in 30 years. This causes issues as professionals always think he will change and he will hold out forever unless he wants to change. They at least believe us now. I will be relieved if we get pip for another period as UC was easy and carers is linked to and that gives us more breathing space and can do more projects to help DS get better. As he's non-verbal he has 12 on communication alone which should be safe but you never know.

We have mended the washing machine and all holiday washing is done so one thing solved. Still have bathroom sink and shed to fix. I have put to DH about downstairs bathroom and washing machine moving and he'd said no before but now has said yes so I've emailed men who did kitchen to ask for a quote. Will need listed buildings consent, 13 forms for me, yippee, but should get it fairly easily as its in extension. New turf coming on Friday and new chicken flooring.

@Squirrelsandhedgehogs - how can anyone tell if a person, who is non verbal, has schizophrenia? (Unless it’s obvious they are having hallucinations?)

My brother had an episode of paranoid schizophrenia in his 20s. However, he did tell me, after an overdose, he had been hearing voices criticising him; and he thought everyone in the streets was looking at him. He was quite wound up.

Afaik, he’s never had another psychotic episode since, but he’s never been the same as he was before either. A Rethink team leader told me, the modern thinking is, it’s not a case of one episode and then it’s back to normal with schizophrenia.

My brother has lived on benefits ever since - 40 years plus. He had his own house though already, and while he didn’t live healthily, he did survive. (We both inherited money, enough for him to buy a house where we come from - probably one of the cheapest areas of the country)

I forgot to say Queen Sq says the metabolic disorder I carry, and DD1 suffers from, is enough to cause schizophrenia. My brother could carry both gene variants, whereas I only have one, if both my parents were carriers.

Yes @BlueandWhitePorcelain It's impossible for anyone to know when he hasn't communicated any thoughts since September 2022 hospital admission whether he has delusions and hallucinations. He has every other symptom of schizophrenia but hospital ruled no saying he didn't have delusions and hallucinations. We really don't know, some behaviour is odd like before hospital he suddenly started watching TV on silent and saying he was Einstein / the Prime Minister etc and there's things like he covers his toilet in soil and his eyes are very strange, like he looks through your soul. He trusts no-one, that maybe impact of hospital and failing schools. I hope it's not that and he does seem able to do the most basic things but nothing skilled and no interaction and a lot of pacing. It's such a big diagnosis though I am wary of getting it without more certainty.

@Squirrelsandhedgehogs It’s spooky you say that about looking into your soul. We always felt DGD was looking into our soul from very young! DD2 said the same, and so did a guest at DS’s wedding - who had never met DGD before! (She was 18 months old then)

Now she’s diagnosed with severe ADHD and significant autistic traits!

We're still on holiday, I'm trying to view this as getting to know DD new secondary school self rather than trying to minimise backchat but it's hard!
News from home is that DS has had pretty much an absence per day but no tonic clonics and he's describing his brain as being "a bit electricity-ish".

@drspouse yes! Pre-teens is a whole new world.

Hands up who wants to throw down their cheerleader Pom poms and take to their bed like a Victorian lady ✋