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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.

@Lougle would scented adult play-doh have the same problems as polymer clay?

I know you have said previously DD1 doesn’t like other playing/singing along to music, but would she cope with having a go on instruments herself?

Have you looked at Sheiling College in the past?

I don't know about scented play dough... Might be good.

I looked at Sheiling college a couple of years ago, but that was as a day pupil and it was too far.

I'm really frustrated. The new carer from yesterday bigged DD1 up, talked about plans, etc. Now she's messaged me to say she's only around this week and could I put the dog in another room for this week.

How can DD1 build relationships if they are chopping and changing??

She also suggested a game arcade yesterday. DD1 is excited, so I've asked if they can do that today. "Yes, can you take us?"

This is meant to be helping DD1 and me. It doesn't help for me to have a strange adult at an activity that I could just take her to myself.

Neither the constant swapping and the relying on you are acceptable.

If you are considering a residential placement, Sheiling is worth relooking at. You could also look at St John’s in Brighton. Are you only looking for ASD placements? Or would LD placements where most also have ASD work? What travel time are you looking up to?

BTW, the term ‘waking day’ has fallen out of fashion with SENDIST, so even if a placement doesn’t advertise that is what they offer, they may in practice offer it even if they don’t call it that.

@Lougle when my DS is first settling in to a new carer we used to go places with him and we had to be in the house. Now he's used to the carers we can go out and he's now getting used to going places with the daytime carer. They are planning McDonald's on Friday (the lack of places to go is a pain. He likes bowling but it's so expensive. He goes to the cinema with DD but they did go once when she'd seen the film already and didn't want to go again. Carer won't go swimming, and isn't free at the times DS has his clubs).

@drspouse have you requested an activities budget as well as the part of the budget for the PA?

@Lougle Cat Bingo or Birds or whatever her favourite is. We look at each breed and chat for ages about animals when playing this.

@Lougle marble runs. Are these activities for DD1 alone or with the carer?

No - we haven't - thanks for the suggestion, we tend to use DLA money. DS would be happy to go bowling most weeks!

@Lougle draw a squiggle game. Where you draw a squiggle and the other person has to make a drawing out of it. Folding paper over both people draw heads, swap the paper, both draw legs, swap the paper both draw feet the reveal the creations.

@Lougle ds has very little strength in his hands though he is big and beefy. His writing is still very poorly formed and he can’t do things like tie his shoelaces as they are too fiddly. Throwing pots was amazing. His hands got stronger week on week. Sadly our teacher ghosted us😱but while it lasted it was very very good. Do things badly. Be flaky and giver uppers if necessary. It’s fine. I write lists of what I wish we could do and then lists of things that would be stepping stones to getting there. You and she will find things that make you happy. You do so much really already. Beaches and driving lessons and dogs and colleges and enablers even if they aren’t right yet. I often read your posts and am just in awe of what you do in a day.

has it crossed your mind that you might be brilliant at all this?

Some nice ideas, thank you.

"has it crossed your mind that you might be brilliant at all this?"
Ha! Not after today. I've just sacked the carers!

Today was disastrous. We got to the town with the arcade, and it was closed. It turns out that the guy who runs it forgot to update Google to say that it only opens Fri-Sun during term time. So the carer decided that they could eat lunch and wander around town, but she needed to buy some lunch. Fine. DD1 wanted to be independent with the carer. Also fine...I would just wander around the town in the opposite direction.

Then my phone rings. It's DD1. "Can I have KFC for lunch?" I said no, reminding her that I had packed her a lunch with a chicken wrap, babybel, banana and grapes. "Oh but the carer is buying KFC for lunch so I'll be jealous."

I went to speak to them and explained that DD1 has a lunch and she can't be expected to watch the carer scoffing KFC while she eats a wrap from home. DD1 got distressed and I said that it just wasn't working. Then DD1 got even more distressed, started banging her head on the building and saying she wanted to kill herself.

We sat down so DD1 could eat her lunch then she said she wanted to go home. I drove them home and told the carer that we were done. I've phoned the agency and told them it isn't working and I want to cancel the carers for tomorrow and Friday.

The carer said (off the record) that we're never going to get consistency with that agency because they all rotate, and the 'full briefing' I was told she got about DD1 was 'doesn't need personal care, just spend time with her.'

@Lougle your poor DD. And poor you! I think you are brilliant at managing everything you do. Some carers just shouldn’t be in the job. Same for some agencies.

Thanks for all the kind comments about the garden.

@Lougle Sorry that sounds so tricky with the carers and agency. I hope you can find a more stable and less reliant on you solution.

Hope your DDs hip pain improves @NoHaudinMaWheest Physio is a great idea. I also find vitamins useful - vitamin D, calcium, magnesium or a lot of milk / dairy and sunshine and occasional vitamin.

DH and I only got about 4 hours sleep last night as needed to get up and sort bins by 6am to get the right amount in the bins. DH did it and reduced both green bins by half putting rest in sacks to put in empty bins and both bins were emptied. We have a further 5 green bins worth of stuff, only half full its the weight limit that's the issue. Then needed to catch up on all housework we had ignored to get garden done before the cleaner arrived and she turned up 30 mins early. But we had done that just in time and garden looks lovely.

DS is being very good and sticking just to paths. He has started running round the paths today and cooperated with our lots of washing machine access, our cleaning of his bathroom and going in the garden so the cleaner could do his bathroom. He also ate the scampi and chips I got him. He's had a bath a day whilst we've done the garden and barely brought mud in. We had to clear our mud but now lawn is done that is solved. Other issue was DH let the 3 silkies out and they wandered round for a few hours and I noticed they were eating the lawn. I looked it up and apparently they should not be on it for 6 weeks or so so I got DH to put them back in their run. So DH was chasing chickens. Not sure how we will manage it but they have a big run and we have another area with old grass and may be able to get fencing.

I also contacted a company about a shed for DS with a thatched roof and they quoted £12k to £18k and fees for assisting with planning permission and said that would include electrics and insulation. Our current shed is about 7 foot by 5 foot and that was just for that size. It seems expensive to me. Though will think about it. DS would love it but I think they last about 20 years. I am also not sure if DS would damage it with it being wood, not on purpose but he's clumsy and also does things like he took part gutter off current shed. As he can't explain problems he just does his own solution which can range from improving things to causing damage. Its a lot of money to risk and don't think in current housing market we would get money back though they look so cute and would be like a mini version of our house. I would prefer brick and thatch, not sure if that's even possible and probably will find that's another £30k or so. I need to do a bricklaying course and a thatching course.

@Lougle I think we are lucky with our care agency then! The owner never places a carer unless she thinks it's a good fit, and she knows lots (not all, but lots) of the families personally.

@Squirrelsandhedgehogs tiny thatched house gets my vote. Go all out and make it a bit bigger if you can. If you can get electricity and an aircon unit in there it will heat and cool. Oh and WiFi. I think you would get so much use out of it.

Wow! £18k for a 7x5?? I have been looking at log cabins and around £5k should do a 10x12 with insulation and double glazing (but no thatched roof).

How big a space do you have @Squirrelsandhedgehogs ? Can you get water, waste, electricity, and internet to it? Is the land “garden”? There are quite strict rules about what you can and can’t put up and I think you’re listed too aren’t you? If you CAN do it I think it’s an excellent solution to family life and adults who need more significant support. Mine needs me in the night so not possible for us but maybe when he’s much older.

Thanks @HedgehogsAgree @Lougle and @ZairWazAnOldLady We need to measure how much exactly we have but current shed is roughly 7 foot wide by 5 foot deep but the concrete base it's on is wider but I don't think deeper. Maybe 10 foot by 5 foot. DS loves small and appears happy with current size. It is within our garden but as Iisted we would need planning permission for anything. I would have thought we would get it for something in keeping with house. Neighbours will be fine.

We have a water tap in garden. Think we could get electricity to it. Internet no idea but house has it. It cannot be used for sleeping in at night other than occasional use. He doesn't use it for sleeping though if it was super attractive one concern I have is would be try and relocate. You can apply for permission to sleep but that's harder to get and don't think we would want that as you would likely need to go higher spec again and maybe have bathroom and brick and it would be harder to know what he was up to. It wouldn't include a bathroom but he comes back to house fine now so that's OK. Same with kitchen. He would love WiFi, he currently iPads in shed but no WiFi charges in house and watches videos. WiFi might make it super attractive so need to think that through. I don't want it to be a 24/7 gaming shed. Currently he doesn't game too much but want to keep the walking round the garden, interacting with nature.

I was just asking about a shed with thatched roof and was expecting maybe £10k fitted but it was higher and don't think it would add at all to house price in current climate. I am concerned DS could damage the wood by making weird adaptions like he might take gutter off. I have to discuss with DH but we originally had been thinking of £5k or so and not thatched but I saw a lovely tiny outbuilding shed size with thatch and googled. I think that one was white looking like brick and thatch, maybe custom built. Can't find any one offering that and maybe much higher. They have said we can have an internet meeting with them. But I need a meeting with DH first. I love them but not sure it's the best use of what may end up at £20k. If it would add £20k to house price would do it but the market is grim at the moment and it's wood. Another option is downstairs bathroom redone and washing machine and drier moved, need quote for that. The best would be if we could get stairs altered and extra bedroom made to give DS more privacy and that would add it's value but currently listed buildings preliminary advice is no due to stairs but they may shift. Permission for straightforward things like for like is a month, for changes can be 6 months to a year. I don't want all these big projects at once so need to pick one. Bedroom is our first choice but most likely to be rejected. Bathroom probably second and garden room / shed third. We also have to repair upstairs tap / vanity / ceiling though that is being sorted and shouldn't be expensive or difficult.

In terms of what would be best for DS we don't actually think he would use the bedroom option as it's upstairs and he prefers to have ground floor / garden by himself. But would make house better and get money back. Downstairs bathroom and moving washing machine and drier next door to a laundry room should be easy to get permission for. DS would likely prefer laundry room and love his own bath which would mean doesn't get mud in house or use family bathroom. Currently don't think would get money back but if market picks up we may do. It would be ground floor and tiled so minimal flood risk. Easy to keep eye on as in house. What he may not like is he iPads in there and charges them though now he uses living room much more and can charge things in there. He could still lock it. He does lie down in there. He can use sofa bed in living room but people can walk in. We have put curtains up. We want to stop the lieing down in there. I think shed allows lying down undisturbed. But we don't want him in shed gaming and sleeping. That's fine currently but something needs to be careful about.

@Squirrelsandhedgehogs Is it overlooked by neighbours? If not maybe you could just have a caravan? Not as pretty but all mod cons and easy to get rid of when you sell. Who knows maybe ds might agree to an adventure if you dragged his nest with you?

We can also get quotes and attempt permission on all three and see what we get. Two inside ones are free to apply, shed is planning so chargeable.

@Squirrelsandhedgehogs I can understand your concerns. I’m still voting for tiny thatched house with downstairs bath in main house so DS comes in. I realise that’s a lot of £££ suggestion.

It's not overlooked and neighbours are lovely, most elderly and very sweet and have street parties. Could not get a caravan there, we would need something you can take apart, max of a metre wide when unassembled. His ideal would probably be a treehouse with WiFi and he would be become a giant squirrel.

@Squirrelsandhedgehogs I think a giant squirrel would love a tiny thatched house. Go for it, what’s the worst that could happen?

Thanks @HedgehogsAgree and at @ZairWazAnOldLady Ideally we would do all 3 but it's thinking it through for DS and financially and if we can get permission. Things we can get money back on financial is much less of an issue.

Worst that can happen would be giant 🐿️ destroying the thatched shed by behaving like a giant elephant. 😂