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.

@scoopofmintchocchipicecream What about cycling? We had quite a successful try at cycling the Tarka Trail and staying at a campsite (it had pods and static caravans which might be better from a toilets/shower angle, though we camped). It’s one of the things I’m building ds back up too as cycling holidays can be as social or not as you choose and I think when he’s older might be an excellent part of his year.

Or what about boats? Canals can do an exciting 3-7 days of outside, pub lunch, explore an area, while still having a nest to chill in. I’m immune and hanging about it for ds as epilepsy and water don’t mix but he’d love it.

Thanks @Zeonlywayisup Current shed was here when we bought it. I wouldn't be surprised if it's 30 years old. DH thinks it's 10mm wood though I think it's thicker but he said he measured it. But he has measured lots of things incorrectly recently. But it's not massively thick wood and like shiplap in appearance. It maybe homemade. There is one solid wood door like typical shed door and one non opening acrylic window. The roof has clear maybe coroline on first layer then second layer which suspect is asbestos cement.

DS doesn't like a lot of light. With the window climbing I am worried about risk of breaking glass though he's never broken any glass but glass in our windows maybe toughened. The planning people seem to go to matchy with house first preference then pretty. It took 8 months to get through planning for chimney.

DH made it sound like he would like to spend a few weeks touring shed manufacturers. He was like that buying houses first time, a whole year though next time I put my foot down. DH worked in materials engineering so he finds everything sheds and thatched roofs etc fascinating.

If it has asbestos cement roof it is likely old (60-70s). What is the frame like? It may be far better quality (and sturdier) than anything you could buy at a reasonable price now. So you could paint it and add extra framing to make a solid windowsill supported on the floor. Windows pop out so you can replace them with anything. There are some beautiful ones available in reclamation yards or just go to a window shop or order on-line. (Nb measure properly). Many (all?) asbestos removal companies will quote for removal and replacement with another roof. It’s very quick.

I’m not immune I’m umming and ahhing. SOS there was a (large and over loving) distraction.

Thanks @Zeonlywayisup I've just been discussing it with DH and AI and AI said it was the frame that was important re what would happen if walked on roof. The trouble with DS is you can't assume he will use things as they are meant to be used and I want to be as sure as we can it's solid and he's not going to injure himself / damage shed. He's never injured himself but does end up damaging a fair amount of things by being like a pygmy elephant with one brain cell it's refusing to operate. He's light but very tall and loves to climb and ninja warrior.

DH loves the look of the cosy shed but it's more for a girl to write poetry who would use it as a pretty shed to me. I think we will go out and measure the frame. Asbestos in roofs was stopped in 1999 so it's pre then but no idea how much by. It does withstand DS sitting on roof on a cushion. Not his greatest idea but the sort of thing he does. I am worried any replacement needs to be as strong. Our chicken things he climbs on and they are 19mm and survive but don't know what their frame is. You kind to have to think about everything being used like it's Ninja Warrior.

@Lougle I think that looks too lively for DS3. Although I’m sure his PA would enjoy the option of going to the casino in the evening.

@Zeonlywayisup narrowboats are an absolute no. Tried it once with DSs and never again. DS3 would end up in the water. Because of his medical condition, that would be more of a risk in most canals than for the average person. Swimming in the sea, rivers and lakes mostly isn’t a problem. Swimming in canals mostly is a problem. Swimming in pools depends on the swimming pool. I’m aware some others with the same condition make different risk assessments and e.g. some wouldn’t swim in many rivers and equally some others would swim in canals, but it is the cutoff we have.

Cycling holidays might work in the future. For the first trip, I want a site with activities on site. DS3’s LSA and PA have been away with him before with school (the LSA was employed on a contract for DS3 and when he left the contract ended. Whilst she was offered another contract with the school, it was lower pay and we asked if she wanted to be part of his EOTIS package) and scouting respectively but they haven’t been away together outside of that and I think a one-site holiday will help them see how it will work.

Probably not the right moment but my thinking on cycling holidays progression for ds (if he ever feels better, because at the moment it looks a bit bleak), is something like
a) CentreParc this is a good fit for ds because he enjoys other activities there, particularly swimming, the escape room and crazy golf and we managed go ape last time. Cabins are ideal for us, utterly boring for me but that’s by the by. Cycling very easy as no cars at all.
b) Off road trails on the bike for the day, or overnight in accommodation Tarka Trail, and Granite way both were brilliant for us. There is supposed to be accommodation (might be glamping) at the Eden project which has a zip wire and lots of interesting stuff to see and heartier bike trails. We haven’t tried yet.
c) I found some chalets up in Scotland (I think it was forestry commission) with miles of trails all around
d) old pilgrimage trails in Spain, or the national parks there, this is really the aim for us as it could give us a week in spring/autumn when villas are cheaper and it’s getting grotty in the uk for outside exercise.

One activity we would love but not available for epileptics, is some frankly brilliant looking caves in Wales with trampolines in. The company had other active things to do so you could build a few days of crazy.

There used to be a tall ship that sailed around the Devon Cornwall coast that did disabled friendly crew experiences. I don’t know if they’re still running, but accommodation might be too cramped.

Ds wants to go in a cruise ship but I really am not sure he can cope with it (and I am not feeling particularly up for it).

One of those centres mentioned above, in the Lakes, does DofE for those with disabilities - looks like it would be worth trying.
I'm in a similar quandary with DS as his Scout Gold award requires a similar shorter expedition but the group says they don't usually put these on (I think lots of Beavers get Bronze and he did, but he was 1 1/2 badges short of his Silver which most of the others get too).
All the other parts are either doable at home, or collected over attending meetings/camps which he's really keen to do and the leaders tick off nicely. But the expedition is harder to do ourselves.

@Zeonlywayisup i just saw the other day that tall shop advertising sailing trip for kids on a send group page. I can’t remember its name but it’s still around. I’ll try see if I can find it.

The Jubilee Sailing Trust had tall ships for disabled people sailing out of Southampton, but they went into administration 2-3 years ago.

We took DSs on a cruise and while the cruise itself was good and the staff were extremely accommodating and helpful, we vowed never to take DS1 on a cruise again. It was a nightmare keeping him safe and he couldn’t go in the main pools because he isn’t toilet trained. DH has been with DD2 and DS2&3 since and that’s been OK for them though.

https://www.theislandtrust.org.uk/ it was this I saw operate out of Plymouth I think

They do DOE. It said on their website too @drspouse

I've been watching videos on how to make sheds and was quite interesting but DH is terrible and really slow at DIY so not sure about that but was interesting to see how roofs and sheds are designed. Also looked up asbestos companies and they did put on roofs and gave price for a 15 square metre one of about £2,500 for roof plus £1k for roof removal, ours is much smaller. I looked at our existing shed but think its not worth spending much money on it, its at close to end of life and frame isn't that much different to ones now. I also found price of adding slate effect tiles and electrics separately which helps with breakdown. DH and I are now down to 2 sheds so we are close and have sizes agreed. He prefers one option, I prefer the other but both are us are happy enough with both options. I am just nervous DS may trash DHs preferred one so I'd rather go with cheaper one as if its trashed it will be less money lost. 😂And its more solid. I feel a shed company visit coming on from DH to Yorkshire. DH was clearing plants in the lane - its not even our bit of lane but no-one else does it.

What about something HUGE like this @scoopofmintchocchipicecream

www.windseeker.org/journeys/

@Zeonlywayisup as brilliant as they look, they wouldn’t work for DS3.

Enjoying reading all the plans/potentials for trips and tiny houses. Gardened my heart out today ah it’s been a while. Big chopping down of dead climbers and hefting of pots. Will sleep well now.

Yes gardening like mad here too. Ours tips into wild at the drop of a hat, so with ds that means there needs to be major beating back of undergrowth every time anything gets time consuming.
Ds had a partial seizure yesterday. We have a neurology appointment tomorrow. His LD epilepsy nurse wants to come but I don’t really understand why? I said yes (mostly because it seemed rude to say “no”!) but I’m worried it’s going to make it even harder for ds to cope as he struggles the more people are in a conversation/room. She is really kind but I actually want to talk to and understand what our options are not “chat”. Frustrating and a little bit intrusive. She is very focused on SUDEP and while I understand that’s a risk I really would rather talk to someone else about it and not in an unfiltered way instead of focusing on what I feel is important which is balancing the effectiveness of meds against the quality of life for my son. I would much prefer to take dh (who could really benefit from attending) but that would be yet another person for ds. I’m trying not to be negative about it as overthinking it all isn’t going to help but it’s stressful.

@Zeonlywayisup I agree about conversations on SUDEP. I know the attitude is that young people have a right to be party to conversations on their health; but once they have heard about SUDEP, I don’t think it’s helpful to them, to hear about it repeatedly! It is what it is! It’s just depressing for them!

Hopefully, the LD epilepsy nurse just wants to listen, and be kept in the loop?

@Zeonlywayisup none of what you posted is overthinking it’s all sensible required thinking. If your instinct is telling you it’s possibly too much with the LD nurse present maybe cancel her this afternoon. I had to google SUDEP and I can’t see how it would benefit DS to hear any of that as he can’t do anything about it.

Sorry about the seizure @Zeonlywayisup

Also did gardening here today for a couple of hours with the now early retired DH so I have him all week now. Silkies came round with us.

We decided on a shed so I've e-mailed the company for a new quote as what we have agreed is slightly different to before. I realised the Cosy shed luxury one wasn't 14mm shiplap but was 7 inch weatherboard so we are going with that one with a slate effect roof as no fire risk and lasts 50 years. Have asked if they can add a canopy to front. Need to do the planning permission now. I think it should get through fine as it'll be quite matchy with house.

DD1's care started yesterday. She only managed an hour of the 3 hour session. We're going to do another session on Friday of just one hour.

It’s frustrating @Lougle but quite a good start even if not what you’d hoped. Ds does very short activities but I am hoping to build them up into 3 hr sessions with travel, snack and a bit of social attached. At the moment he is managing an hour and a half once a week with a PA. Otherwise 3 half hour classes and one 1 hour trampoline class with me.

@Lougle well done an hour is promising. What did you think of the carer? Will it be the same person every time?

@Zeonlywayisup honk honk good luck today

It’s taken DD years to allow her things to be sold on e bay and after 18 months of waiting one of her items sold. I had forgotten about them as they are priced quite high. £15 profit. Let’s hope it’s enough to encourage more clearing out.