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.

@roaringdragon
We do have a play room but it would only fit a tiny set of children's bowling pins and DS and balls indoors... Not a winning combo.

Sneaking an early morning catch up though to be honest things should ease up here a little.

One back to uni yesterday (so excited which was good but a person less at home is always strange and sad for me but I think happy otherwise). Ds is very very tired and we have all had a cold which doesn’t help. Builders in all next week. This is good because my house is so messy and dirty it feels insurmountable and I will be stuck at home in between ds activities so will just clean and tidy.

We have been having trouble getting meds again. (Compounded by a receptionist who has no record of ds’s need for me to take his calls etc etc and has decided I need to come into the surgery and fill out forms. Tedious not least because I suspect it’s just our surname making her feel we are not local. Oh the joys of having to prove we are worthy of breathing.)
Valproate so far doesn’t seem to have done anything much though ds is markedly tireder. Seizures unchanged but we increase again in a few weeks.
I laughed at @Lougle s brush with good day commiseration as I have similar moments. I am trying to teach myself to hear all the worries but not carry them. Great in theory but I woke at 5…!!!
My bees have died which is sad even though they were a free swarm and one of our cats has gone missing. It’s been 6 weeks and she’s 7 and has never missed more than the odd meal so I think something awful must have happened. We will need to get another as we need at least three (rodent deterrents) but I can’t really face the fact she’s not coming back.

@drspouse we tried a retro arcade place with ds. £8 for 20 goes and the pinball machines were a great success. Ds got so excited the guy at the next pinball machine paid for him to have an extra go when he ran out of credits. Sweet and reminded me of the 80s and similar things people did for me as a kid. I’m thinking of trying squash with ds. I suspect he will enjoy the whacking against a wall and its enclosed.

@Zzzzzs I am sorry about the disappearance of your DCat. It is devastating!

Hope builders goes OK @Zzzzzs

DS left his bathroom open so went in to do more work but discovered there was a lot of dust etc from electricians and DS had also got muddy handprints on the new paint, tiles and soil over the sink. So I cleaned all that and the kitchen and entrance hall and cleared DSs cupboard out. DH cut some skirting board and then went to pick up more things - sink, tap and glue gun but ran out of time. Hopefully plumber round tomorrow to quote. At the end DS came to the door so we stopped then as he wanted to come back in to his bathroom. I hope we can get washing machine and drier moved soon as currently on an extension lead which they aren't really supposed to be on. We need to finish skirting in laundry room, sealant and put worktop in place, cutting it, get a few more items and ideally I would paint rest of cupboard and behind where drier currently is and we also need to support bathroom worktop or take down. Found DS had a bag of things he had collected - a £10 note, 20p coin, shampoo, rose bath foam, 2 toothpastes, DD or my leggings and DD and my water bottles we took to Borneo both full of water. Also found ibuprofen in the downstairs bathroom but reckon that was the electricians as its not a shop we go so got rid of it.

The electricians have made the downstairs bathroom light a walking switch and the cupboard light a sensor light and added more sockets than we asked for in laundry room but all same price and did the boiler switch move for free, though wouldn't have chosen a walking switch or sensor with DS but so far they are all surviving. Its very 19 year old electrics but great boys.

@Zzzzzs I’m sorry you are still battling for better seizure control.

I always update our weekly whiteboard timetable on a Sunday. When I was doing so today, I was looking ahead at my diary for the month of October. DS2 has his last appointment with the paediatric team. I may have shed a little tear. Which is absolutely ridiculous of me.

When ds aged out of paediatric his original paediatrician came to meet us. Sadly ds needed to go urgently so I couldn’t tell him what a help he had been. I felt very emotional.

College said they would help with transfer to adult services but nothing has happened. Do I need to do anything or do we just wander off?

@Zzzzzs it depends if you want further support/provision. If you do, you can contact the LA. If you don’t, you don’t have to do anything.

We have had transition clinics, met all the team (we already knew some of them) and DS2 looked around the adult ward, so we aren’t being thrown in the deep end.

I don’t know that we need much beyond what we’re getting. I wish there was a club/day setting ds might enjoy but he’s not really well enough to succeed starting something new. He’s horrified this evening because I suggested we could get some chickens. He actually asked for them some months ago but he’s tired now.

@Zzzzzs sorry your cat has gone missing. I hope she returns.

@roaringdragon not at all silly to shed a tear that you're transitioning to adult health.

DD1 didn't really get a transition in health terms. I think her paediatrician got bored of her and so we've been left in a funny situation where psychiatry through the LD team adjust her medication for one purpose, then physical health switch it for another purpose. I don't know if psychiatry even know that her antidepressant has been switched by gastroenterology.

We went on our kayak training day yesterday. DD2 was fairly miserable in the morning, especially as it rained quite heavily and she hates the rain. The lead coach noticed and spent some time talking to us to work out how to help. He really took the pressure off, suggested that we just practice quietly in a corner or that she took some time out, and we said she could go home at lunch time. She decided to stay and was a lot happier after lunch. She did both of her wet exits (deliberately capsizing and exiting the kayak from underneath, with and without a spray deck sealing her into the cockpit), which was a huge achievement, and passed the course. I'm really pleased because now she can come out on the water with us independently of the club whenever she wants to.

Meanwhile, DD1 arrived after lunch and one of the club members took her out canoeing while we did our training. I had bought some cushions to pad the chair, but they'd already thought of that and had brought a special seat liner. She had a great time and paddled a lot.

@Zzzzzs it’s horrible not knowing where a cat is. I hope he appears soon.

@Lougle your girls are amazing! They push on and find light and joy through all the difficulties.

@Zzzzzs if you think DS might be ready for a club/activity/day centre within the next 6-18 months, you might want to start putting the wheels in motion now. It can take time to get the funding sorted, find somewhere suitable and some places have waiting lists.

@Lougle yesterday sounds like a real success for DD1&2.

@roaringdragon thats very useful info. Thanks. I honestly don’t know what he’d like or what’s out there but investigating would be sensible.

When DD1 was under GOSH, there was a Transition clinic at Queen Sq (next door). A paediatric consultant from GOSH (the clinical lead at the time) and DD1’s new consultant neurologist at Queen Sq both attended appointments with DD1 and us for about a year from age 17. It was a bit odd really, as during that time, we won the tribunal for a place at Young Epilepsy. So, she was under GOSH consultant neurologists there, until she was 22.

When she left, her consultant neurologist at Queen Sq had been promoted, so our local consultant neurologist referred her to another consultant neurologist at Queen Sq. (There was no Transition clinic at our local hospital - she was just transferred at 18 from paediatrics to adult neurology)

GOSH always told us, our local hospital needed to know about her, for when she turned up at A & E, so she was always under the local one too. I was most sad to say goodbye to her local paediatric neurologist, who’d looked after her, since she was 14, every time she was admitted to HDU!

That's great re the kayaking @Lougle for your DDs and sounds like amazing staff.

DH went out and got more things we need for bathroom and laundry room though I got a message from him at the shop do we need slotted or unslotted waste so I told him unslotted as no overflow but not sure why he thinks I know. I did know but only as I've looked it up.

Then plumber we use for boiler phoned to say was coming over in 15/20 minutes to assess and quote and we told DS who was in the bathroom at the time. DS did then get out of the bathroom and everything was available for the plumber to assess and quote. He says he's available on Thursday or Friday to do the work and we also told him about the bath plan and seemed OK with that too. He left then I cleaned the downstairs bathroom again and did more painting in the cupboard. DH was supposed to be doing skirting board but didn't get any done just seemed to be on his phone. DH has now gone to piano and says he's doing skirting board after though not convinced as he won't be back until after 7pm then we will eat. We have 2 days to get things done pre plumber. I'm definitely on track with the bathroom. DH is a perfectionist so I am not sure he will have done the laundry room but its only the worktop that's essential for that.

DD2 asked me to phone the surgical team to find out when she'd have her op today. I said I couldn't really do that, but I could phone and ask if they have a short notice list that she could be added to. It's a good job I did phone, because she's not even on the list. They had received the email from the team saying she needed surgery, but it was buried in the inbox because staff had been on leave, but apparently they also should have completed a form to request the surgery too, which they haven't. She can't be added to the list until that's done. The lady was very nice and I explained that DD2 had already had quite a lot of time off, so although it was ridiculous to ask, if it could be timed for half-term, that would be amazing. She said that she might be able to schedule her for October 26th and to leave it with her while she chases the team up.

DD2 is getting frustrated with her course. On Mondays she only has one lesson, and the teacher uses AI to produce the workbook, so it has a lot of errors and being level 1, it's really basic. The teacher also makes them go through the workbook in a class group, and intersperses activities that aren't in the workbook, which DD2 sees as time fillers. None of the students answer any questions but DD2 says there's no point in her answering the questions because they're so basic. One boy does answer questions but deliberately gives wrong answers in an attempt to be funny. It's not easy. She largely enjoys the other 3 days though.

DD1 has been invited to look around a day service on Wednesday. Her psychologist recommended it, and they haven't been put off by my warts and all summary of her, so I'm hoping it might be good.

DD3 is really tired. Hopefully she'll rest well tonight.

I have just done a session on using a dictionary with DS. We did it together for his Cub book lover badge about 6 years ago but apparently nobody has thought to show him one since. Why does he go to school again?

Well isn’t it a good thing you phoned @Lougle !!! Ds’s meds are supposed to be on their way (again) so maybe I can relax for a month when they are here. Builders were delayed by a day so we moved cars late at night and got up at crack of dawn for nothing. Ds lost his cool with all the change. Heartbreaking to see but probably to be expected.
Poor teaching is a common and I was very struck by a nursery teacher long ago telling me that we all have to learn how to cope with teachers we don’t gel with or who pitch too high or low or with classmates who are not as engaged as we are etc etc. recognising others deficits is fine but we can only really control our own response to them.

I’ve been thinking about wills. This winter is when we are planning to really focus on it all as what we have in place is very old and generic (shamefully I don’t even remember the detail myself). People keep telling me I need an expert who deals with a lot of people with children who will remain dependent. Is that your experience? How on earth do I find such a person? I should probably add there are no millions involved!

@Zzzzzs November is National Wills Month. You'll find lots of charities will offer discounted wills packages. We did ours using one of those, so ended up paying about £160 to include a Disabled Discretionary Trust. Basically, DH and I have life insurance. If he dies, I get it and vice versa. If we both die, the girls split it, but our original will put DD1 & DD2's shares into DDTs, which means they they don't have it counted as assets because someone else controls what they get and when they get it. Our updated will includes DD3 in the DDT but we haven't had it witnessed yet, must do that.

By using a DDT, it allows the girls to continue to get Universal Credit and for DD1 not to have to pay for care from her inheritance, if there is one.

Tbh, it may all be irrelevant because the life insurance stops at around retirement age, at which point there would be no inheritance anyway. I'm hoping that neither of us die young enough that anyone should inherit.

We just used a high street firm of solicitors, who listed trusts among their specialties. We have left DDTs for DD1 and DD2, and the surviving spouse gets to live in the house (or they can move to any other), during their lifetime. We are already tenants in common. Hopefully, it’s relatively straightforward? Assuming, we don’t use up DH’s SIPP by living 30 years, there would be a few million for DC.

I think it depends what you want/need. For example, if you want to look at Trusts rather than just a will, it is better to use someone with experience of Trusts.

Good job you did phone @Lougle

DH is apparently going to his old work tonight for a meal, and tomorrow he's there all day giving a talk. So having to do as much as we can today as plumber is coming on Thursday or Friday, date tbc.

Just cleared bathroom cupboard, dust all over it from electricians and cleared all out and painted it so that is done and bathroom all painted now, at least the first coat and its thick. DH did more skirting board. DS had left room open like he wanted me to do work but then at 1.40pm he was trying to get back in so we stopped. Will do more this afternoon and then hope to finish off after his conference tomorrow.

DS had taken the walking light switch and had taken it out of its packet and appeared to be using it.

What a day. DD3's school family liaison worker phoned from 10-11am, I had a meeting with the SW and Psychologist from 11am-12pm to discuss care planning for DD1, DPs dropped in from 12pm-12.30pm, the LD phoned to book in a psych review at just before 1pm, a school teacher phoned about DD3 from 1pm-1.30pm, then DD2 was feeling poorly with a fever and tachycardia, so we had to come to A&E at 2.30pm. Now in SAU, IV antibiotics in and waiting to transfer to the ward. Annoyingly, I phoned the GP surgery to try and circumvent A&E to go directly to SAU, but the GP sent a message to go to A&E who would transfer us. I thought that meant they had referred to SAU, but they hadn't, so we had to sit in majors for a couple of hours until the doctor could see us and phone SAU.

I'm tired. At least DH's new work are a good bunch and they've said he can stay home to look after DD1 tomorrow. I was annoyed at the SW because despite me telling her that the care package had failed, she showed us an email today to say that we were struggling 'despite the care package being in place'. I set her straight that I have DD1 24/7.

Sorry you are back at hospital with DD2 @Lougle Glad your DHs work is kind.

What an awful day @Lougle. I’m sorry DD2 is back in hospital. I hope your busy day has at least been helpful and rather than full of pointless discussions.

Well, helpful in that the SW thought DD1 might be able to live somewhere where she might just ask for help if she needs it and we've told her that's not the situation at all.

DD2 feels warm to touch, looks flushed, feels hot, but they've stuck a probe under her tongue and they say that she's only 36.5... I'm doubtful, tbh., but I'll let it go. The IV fluids have brought her heart rate down.