The Goose and Carrot Pub Thread

@Lougle what is the new diet that you are abandoning?

@roaringdragon and @Lougle thanks for transport info I will pass it all on.

three days in to new meds now. Better sleep but my boy looks very flat. I’m still feeling grotty and we have building work coming to fruition in the next couple of months which requires so much of my time. I need to be a bit better at everything.

@Zzzzzs im always happy to read about better sleep. That will help everything.

@NoHaudinMaWheest how is DD taking the driving news?

@RavenLaw lovely to see you, good news on Y7 placement.

@Lougle you can only do so much and a 7 day week of cooking for hours is a lot. Just the shopping list for it is a huge task.

I was late for a meeting and now I’m late for a work deadline. I really wanted to be good at working but every time I get a job I’m a bit slow.

@roaringdragon

You have done an awesome job in getting the right support in place and enforceable. I was uninitiated unfortunately. The provision was in the EHCP and deliverable by school and it’s that part that went awry. The specification in the plan wasn’t adhered to, then DC wasn’t amendable, then there was an opportunity to water it down at AR and remove it. Smoke and mirrors! I’m far wiser now but mist of it is after the event. Anyway, it’s all water under my particular bridge.

@roaringdragon

Amenable! 🤣

PurringTiger it is really admirable that you are working at all in your situation.

Dd is very cross and definitely wants to appeal. I need to do some phone calls on Monday. We only have 21 days which is also making her cross as in England it is 6 months.

Hope you feel better soon @Zzzzzs

Sorry about your DD needing to appeal @NoHaudinMaWheest

DH and I went downstairs after DH had told DS we were going to do gardening. Then we go down and discover DS is in the garden which means he wants to be in the garden and maybe he wants us to do the downstairs bathroom and laundry room like we did a couple of days ago so we did 3 hours more work each on that. I was just deep cleaning his bathroom - cleaning the tiles, the grout, the walls, he puts soil on everything so a lot of deep cleaning to do but did about half of what's left. Am hoping will just be one more deep clean before I can start painting. DH cleared the dust from sanding and tried to remove the tape on the floor left after old lino removed in laundry room.

We did a radius corner drawing for the worktop we want and sent that over to company making it. DH agreed to my new placement of everything in the laundry room and was good to check it there. Will need to run it past plumber and electrician but should be only viable option for drier, washing machine and sink in there and will have solid oak worktop over all of it, the new one plus we have some left over from kitchen can use. Will need to get legs for it.

Now looking at jacuzzi baths for DS. We had one we inherited in old house which were at when DS was in primary. I was originally planning on waiting for new summerhouse before new bathroom but now pondering changing the order. Though some of the jacuzzi baths have 4 week lead time. DH remembered could get air or water ones and appears there's a third hydro category and also option of lights either 1 or 12, plain or multicoloured, and some are like disco lights. DS used to love swimming pools with jacuzzis /jets. He isn't a fan of noise but did use our old jacuzzi bath and is normally OK with noise he controls. Lights am not sure about, he used to love Christmas tree lights and gaze at that for 30 mins a time but I don't know what cost is to install and whether it will go wrong easily, its a few hundred to add but fitting will be on top. I'm not totally sure where the electrics go - we have space for a 170 by 70 standard bath with a bit left over - plumbing should be fine though need to check with plumber where best to get taps. No idea about electrics, electrician said he can quote when he comes to do other work but think it will vary a lot by type and whether lights etc. Can also get heater but that makes it 40C permanently which may well be too hot for DS. He has kept the rug down I put in there a couple of days ago which is good.

We have bathroom tiles in there which are white 15x15 ones which are in the right place and I am cleaning and seem to be revivable from DSs soil and cleaning grout but they start at about 90cms and go to ceiling so would need to add below as well as floor tiles. I think we can do that but DH thinks we need to take all tiles off and redo everything though he was very impressed by my cleaning. Quite hard work though as its Jif and scrubbing tiles and the walls and ceiling and floors.

The staff took DD1 to A & E today. The ECG and chest x ray were fine, however they said she could go back, if any more symptoms appear. They took her to McDonalds afterwards, so she was happy with that!

There’s an appointment with her consultant neurologist on Tuesday, and no doubt he will be pressuring us to agree to a new battery in her VNS. Every time, she gets a new consultant, they think they have a quick fix for her epilepsy and they don’t. We’ve seen it all before and it’s failed! 😨

Then, we need to discuss the class action against Pfizer in the US over Depo Provera, increasing the risk of mengioma 5.6 times - which nobody told women about! IIRC, they’ve paid out US$5 billion plus. She’s been on it 14 years!

@LathkillDale I hope she hasn't got a fracture. It's such a horrible thing when they're in pain.

@roaringdragon I don't know why they can't do the Sports BTec in one year. Presumably because they would need more lesson time and a) the sports teacher wouldn't have enough time, and b) because DD3 would then have to drop something else. They are going to do the D of E sports requirements in those lessons.

@Zzzzzs the Gastroenterologist wanted DD1 to try the low FODMAP diet. Then the upper GI surgeons want DD2 to have a very low fat diet (not even egg yolk). The resulting meal options are really restrictive and DD1 was very upset. It's not helped by the fact that my Dad makes nice treats for the coffee morning he does to with my Mum, so last night she was furious and upset that she would be going there today and wouldn't be having the sweet treats. It's just not the time.

Today, DD1 came to me and said "I kept trying to take cereal out of the bowl, but it still said 120g...." That was her confessing to eating the equivalent of three breakfasts. Impulse control is an eternal journey.

We went to the canoe club today, and at lunchtime I mentioned that we had an older daughter who couldn't kyack because of her disabilities. Within 5 minutes they had discussed it and dragged me through to the bark store. They presented two options - either an old Porsche driving seat that could be used with two canoes lashed together, or an old school chair with no legs, strapped to the canoe seat. When I said we'd give the school chair a go, the coach got to work and called me through to see it and try it. I've ordered a cushion for it. The coach is going to take DD1 out on the canoe while we do our training in a couple of weeks. How kind is that?

Those stats for Provera are alarming, what does that mean? Is it less than1 in 100,000 gone up to 5.8 in 100,000 or less than e.g 0.0001 in 100,000?

@Lougle your canoe club has the kind of people that are thoughtful and normal minded compared to the mess of official support.

@NoHaudinMaWheest 21 days is very pressured. Has DD got her teeth into the process of appeal or is that in your in box?

@Violasilkie its all moving along at yours. I love that you and DH are making a beautiful, practical environment for you all.

@MumofMaskers how are you getting on this weekend? Young ones are exhausting even without extra needs.

@roaringdragon thank you, the risk is what it is and the alternative has far bigger implications.

Thanks for the work honks.

It's not at all surprising. You do so much in every day life and you're trying to fit work into it. Don't judge yourself by the standards of people who have less complicated lives. I haven't worked for 6 years now, and when I did work, I only managed to work consistently for 2 years before I had to take a leave of absence to look after DM, then I worked 12 hours per week for two years before I had to resign altogether because of the girls' SN. That last two years was car crash territory - constantly having to take phone calls, arrive late, finish early, etc. It wasn't who I was, at all. It was just the only choice I had.

Apparently, the risk goes up from 1 in 10,000 to 5 in 10,000. It’s just if it causes seizures, blindness, etc for DD1, it’s catastrophic; and it’s not her decision!

OTOH, Queen Sq told us, with regard to osteoporosis and she’s already got osteopenia, we are talking about the risk of fractures from drop attacks today, versus osteoporosis in twenty years time…..(when she might not be here anyway)?

What a lovely canoe club @Lougle - We've found similar with the disability skiing - no adaptation is too much, even the time when DS wouldn't go on skis and they opened up the inner tube run specially.

@LathkillDale 1 in 10,000 people will get one is a lot even without the increased risk. Glad DD1 didn’t have a fracture yesterday.

@LathkillDale does that mean 2 in every 1,000 people are at risk of one if they take provera? Probably a question to ask the gynaecologist. Thanks for highlighting it.

You are doing well to be working @PurringTiger but its hard to combine with SN when so much headspace goes on that and sometimes has to take priority with no notice. Though your DD is progressing well so hopefully in time it will be easier to manage.

Lovely canoe club @Lougle

Glad the skiing club have been kind @drspouse

Thanks @roaringdragon

We know DS loves baths - still a bit shocked how that happened though it was scented floral bath foams, hair conditioners that are very soft and thick, he seems to love his long, slightly wavy hair. He did used to always love swimming pools and jacuzzis /jets /waterfalls/waterparks in pools once he had got through the I don't want to get changed part. Then we couldn't get him out. So we know he loves baths and jacuzzis. It does say don't use foam bath in them but we did before on one we inherited and it survived and no-one ever got ill so think that's doable. The rose / lavender bath stuff I have for him (Faith in Nature) isn't that foamy - the cheaper Waitrose own brand stuff I've managed to switch him on to is but we can adjust that easily. You can also get self cleaning systems for £100 though not sure what that is exactly and says sometimes need to get a fitter to add and talks of a generator. Otherwise you deep clean them once a month for DS, which I will add to my cleaning list. But I don't think overall cleaning will be up as he won't be trailing mud upstairs and will wash off some bathroom mud. I think he will manage noise as he controls it and he used to use our old one. That part of the house isn't that near neighbours though I do wonder about 3am jacuzzis. But he'll probably adjust if we say.

Been researching type more and we can do 1700 for length only but most of them are that, and for width 700 or 750. And we need single ended so plumbing is accessible. We have decided either 1 light or no light as 12 seems excessive for a normal size bath and an electrical issue waiting to happen. We also decided to only get them if they are pre fitted as can't see an electrician is going to want to drill a hole for one or would be an expert in it. He's variable on lights but has liked coloured lights especially multi-coloured or red in past. They seem to colour change. He also likes to have main light off and it might be he could tolerate the spa bath light, think you can have it off. It just seems to turn the water disco type colours. Another thing is some of them seem to be very heavy, one was 96kgs and DH and I need to be able to carry it. We are both fairly strong but don't want one we struggle to get in. Some of our neighbours would offer to help but they are all about 80 so can't see they would be able to. DD could probably lift 96kgs by herself but she won't be back until December. I have impression DS is keen for bath and tumble drier and washing machine moved and that's why he's leaving the room open so much. So we may move it forward. Some have 3 or 4 week lead times as well. We aren't sure where electrics go but DH says on one in old house (probably 80s or 90s one) it was at other end to taps and taps were at drain end of bath. There's not so much on them nowadays, keep getting articles about hot tubs come up, think they went out of fashion. I am hoping DS can relax in it, which think he will, and that it may trigger memories of holidays and going out.

Thanks all for the welcome - this feels like a lovely supportive group.

We've had a little adventure this weekend, we went to visit family on the train which we've never done before. It took a fair bit of planning but we did it and my children loved playing with their little cousins.

Back to school for my youngest tomorrow - any advice on how to deal with the school when he inevitably melts down and refuses, and then I have to say he can't go in if they can't regulate him, and they say that they'll just have to take him off me and he's 'always fine 5 minutes later'. They know this isn't true and his mental health and behaviour at home significantly deteriorated at the start of the year. He has only accessed his classroom once for an hour on the first day of term and since then hasn't managed to go in, on the second day the TA was trying to peel him off me, fence posts etc. Last week we managed 5 minutes as a soft start but with me there - he was extremely vigilant if I took more than a few steps away from him. I just don't think he is able to separate at the moment. I want to start the process of getting an alternative in place but how?

@MumofMaskers i was in a similar position 9 years ago and I regret not realising how ill my DD was and how much damage was being done repeatedly taking her to a school that couldn’t meet her needs. Hooray for little train adventures.