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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.

Honestly, I'll happily keep my crazy schedule if I can avoid sorting Easter for 12!! Hats off to you.

Sorry that DS is looking grey. I don't like that.

In lieu of @RavenLaw 's expertise, @HedgehogsAgree , this CPS Prosecution Guidance https://www.cps.gov.uk/prosecution-guidance/stalking-or-harassment

Says:

Behaviour by a suspect as part of a campaign of stalking or harassment could include:

frequent unwanted contact, for example, attending at the home or the workplace of the victim, telephone calls, text messages, emails or use of other mechanisms such as the internet and social networking sites
driving past the victim's home or work
following or watching the victim
sending letters or unwanted 'gifts' or items to the victim
arranging for others to deliver unwanted items to the victim
damaging the victim's property
boasting that they are aware of the location or address of other family members or children
burglary or robbery of the victim's home, workplace, vehicle or other
becoming further and further embedded within a victim's life, for example, by making contact with their friends and family
threats of physical harm to the victim (including sexual violence and threats to kill)
physical and/or sexual assault of the victim and even murder
Victims may also be forced to alter their lifestyle choices which can include having to move home or job, restricting their social activities or otherwise altering their routines.

Thank you @Lougle i think it’s the nature of that list being wide and suggestive rather than, for example, here are the 6 things that are harassment. Good luck to DD1 today.

@ZairWazAnOldLady honks for DS’s health.

I am away with DD hence silence. Am seeing quite a few revealing things e.g. hyperactivity which we never thought we saw with DD, but any spells of inactivity and she's leapfrogging bollards or running up slopes when we get off the train!
Also she can't be at the extreme levels of messiness she is at home (she has a tiny bedroom and DH found 5 water bottles and 3 cereal bowls) and though she doesn't seem to see that she just throws all rubbish straight on the floor she is taking prompts better than at home.

@NoHaudinMaWheest I hope DS’s interview went well.

@ZairWazAnOldLady sorry DS isn’t looking too good.

@Lougle I hope you have time to breathe today after a busy couple of days.

DS1 broke my glasses yesterday. They aren’t fixable. Luckily, I have an old pair I can use for now. DS1 had an appointment with a new consultant yesterday too. During the appointment, the specialist nurse suggested we need to review DS1’s ACP as part of transition planning. It caught me off-guard, and that threw DS1 even more off-kilter. I have 2 appeals ready to submit as soon as I have the mediation certificates. The LA has stripped the content of DS1’s EHCP and named a PMLD/SLD/PD SS for September onwards. The SS’s HT is horrified.

Sorry about your glasses @ExistingonCoffee and the EHCP.

That's impressive organising Easter for 12 @ZairWazAnOldLady

Hope you have a nice stay @drspouse

Hope you get a chance to rest @Lougle

Well I have been told I am a very lucky person today. I bet you will all be jealous when I tell you that is because I managed to get 2 dental appointments for next Thursday. 😂I have to go private as well. Less lucky was the plumber came out and took the vanity tap off the upstairs bathroom and said we need a new tap. That one was £300 and bought in September. It has leaked on vanity worktop damaging it behind sink and gone through to kitchen ceiling causing a crack. And now we have no bathroom sink so washing hands in bath. DH got me to contact firm we bought tap and vanity off but not sure they will help. I have tried and they will call back but wanted a video of leak but at that point plumber had taken everything apart and disconnected water to sink so could only give photos. DH is also going to France for a few days and we have to get new parts so might be a couple of weeks with no sink. I have had to empty vanity as well which will probably mean DS uses about 10 bottles of bath foam in one go. Though conditioner seems to be highest risk. I need a new hiding place. DS will think it's Christmas as I have about 50 bottles.

More successfully have got turf and chicken flooring arriving on Friday. DD is off to rowing camp 2 next week. Then possibly rowing camp 3. And the boat race before that and all night party. Just starting the holiday washing. Having a roast dinner tonight.

Glad Race Around the World is starting. Hope everyone has a nice Easter weekend. Tomorrow have cakes for Easter and a Waitrose order with more conditioners, fruits etc for DS. Gardening on Saturday with DH. I nearly ordered some more silkies today then I thought no I do not need any more. Trying to track a parcel down which has been left in my safe space which I don't have but think we have located it. DSs pip renewal is start of June so need to think if I need to do anything for that. He should be about 28 points for daily living (was 35), it's just the evidence that's current is lacking though think gp will help.

ExistingonCoffee I hope you can get your glasses fixed soon.
I assume that the LA are trying to save money but really that is an outrageous decision with no thought behind it.

squirrelsandhedgehogs that leak sounds majorly annoying but your Easter plans sound good.

I got Ds's usual feedback about his interview 'fine - I don't know'. With the Easter break it will be the end of next week before he hears the result.

12 is small here but I’m just running on empty. Sooo news today is no change. We are still only attending college for less an hour and a bit a day. (Ds is very confused by this), I don’t think anything is set up for when we go back but I have sent an email to college asking what the plan is as it’s been a month now and we have missed 38 hours of education by my reckoning in that time. All his other people have been fantastic and we are maintaining his week as best we can. Ds ate a cream egg!!!! I know not a win for anyone else but it was gooey!!!! He liked it. I’m having a little cry while I type at how amazing he is. I’ve booked a call with the LA caseworker as I couldn’t get through to anyone at college. It’s holidays now so we can slow a little. I talked to ds about what we could do if college finished and he says he wants to do college AND all those things. That’s what I want too.

@ExistingonCoffee I think it's shocking that the nurse would raise that in front of DS1, and in fact at all in a standard consultation. That's such a delicate matter and you should have advanced warning and choices about how and when you discuss it. Especially with your history. I'm so sorry.

Was the consultation helpful?

I'm glad you have a spare set of glasses. I'd be really stuck without my glasses because I can't drive or really see without them!

I'm reading your last paragraph and I've decided that we're close to April 1st so it must have been an April Fool's joke. Are they seriously going to go there??? More fool them.

@NoHaudinMaWheest I hope the interview went really well!

DD1's carer started today. Oh my goodness she's perfect for DD1. 25 years old, so like a big sister figure. Chatting to her like an equal, not babying her. Encouraging, friendly and confident. They went out on their own with DD1's new wheelchair power assist to the village. I had 3 phone calls and then DD1 decided she needed to come home, but that was fine. She said she needed to go to her room after 2 hours, but that was fine. The carer offered to make her a cup of tea, then sat and chatted with us to get to know more about DD1. She's likely to do 3 days per week and another carer will do 2.

@Lougle that sounds brilliant! Not to take the bloom off but have you got some exciting days/activities they can do when they hit “I’m used to this now so time to go into reverse”. I find having a trip/whatever or three listed and pre-discussed helps avoid things stalling.

@ExistingonCoffee I am sorry to hear about your glasses and the EHCP! It is just so depressing, isn’t it!

Tricky because* *DD1 is all enthusiasm until she isn't. Today the carer was fooled because DD1 said "3 hours might not be enough. We might need all day." Ten minutes later she was asking to go home.

But there are a few things she third enjoys.

@ZairWazAnOldLady I love hearing DS’s food wins.

@Lougle I am so pleased the carer is a good fit. Wonderful news. I hope the second carer is just as good a fit and also willing to learn about DD1.

Until the nurse suggested updating the ACP, the consultation was helpful. DS1 needs a procedure on a couple of blood vessels, but it isn’t super urgent and can wait until he is next under GA for something else. After, not so much, so we didn’t get to cover all the details of the procedure. DS1 didn’t have a clue what was being discussed, but he knew I was stressed, and that was enough to make him very upset. I’m not averse to a review, it is periodically anyway, but not like that. The nurse had never met us before, hasn’t been involved in transition planning, and, as you will know, the ACP isn’t something that could be updated there and then. I need to talk it through with one of the other specialist nurses involved in DS’s care, then I need to raise it.

I’m glad I was at home when my glasses broke, otherwise I would be stuck too.

DS1’s finalised EHCP landed yesterday, a day late, which I think was the LA showing they are going to do what they want and what are we going to do about it. DH was WFH when it landed. His first response was to ask if I was being serious. I think the LA’s aim is to cause maximum stress and spread our resources thinner. The appeal will be prioritised, so it should be heard sooner rather than later, but it is unnecessary work.

lougle it is great that the carer got off to a good start.

zair creme egg wow! Sorry that so much of the rest of it is not helpful to say the least.

I'm quite annoyed about DD1's car. I've been trying to reject it. Finally, the account manager at Motability called, but I had my phone on silent because the OT was here for DD1's assessment. The account manager left a voicemail saying that was there until the afternoon but then on leave until Tuesday. Of course by the time I phoned at 4 pm, his phone was already diverted to voicemail.

Meanwhile, it was in the garage again last week, trying to sort the alarm issue. Tonight, I noticed that there was a hinge visible on the left hand side of the car. I compared it to DD3's car which is fine. I think they've changed the bonnet switch, then forgotten to put the fascia back on.

Do you mean send it back and cancel motability @Lougle (apologies I know you’ve mentioned this before). My understanding (was that was very straightforward how annoying if not). Our motability car has a warning that it needs a service that now tings whenever it is started or stopped. Garage say it’s been set up wrong and doesn’t need a service at all and to ignore it or bring it in to be reset. In the meantime it’s driving ds bananas and I don’t have a morning to trek to the garage. Grrrrr. (And actually it DID need an oil change service because I dipped it and it was shockingly low on oil and I had to pour almost bottle in). Boring people.

@ExistingonCoffee I’m growing ever more tired at the insensitive discussion of my young man in front of him. It’s recurring and unnecessary and so much worse in your situation. It needs to be routed out of our experience. It’s like the lack of pain relief for women in so many procedures etc just outrageous and shouldn’t happen any more.

Not quite @ZairWazAnOldLady . We're happy with the model of car, but DD2 has a bad unit. So we need to reject it and have the lease terminated. Then we'll be free to reorder it to get a newer unit that doesn't have the early release issues.

How exhausting @Lougle . ☕

@Lougle how annoying. I hope you can sort it without too much trouble next week.

@ZairWazAnOldLady Motability is stricter on the terminations of leases than they used to be and they waive the early termination fee less often than they did in the past. Mechanical terminations when there is an ongoing fault with the vehicle can still happen, but the process isn’t quick.

Z, sometimes I think some professionals forget there is a real DC and family at the centre. I'm sorry you and DS experience that too.

@ExistingonCoffee I’m not sure what this all means for DS1 but if it’s caught you off guard then that can’t be good. Honk honk.

@Lougle oh the carer sounds delightful! I also really want someone close in age to DD as she is only ever around old folk.

@NoHaudinMaWheest Ha! Feedback as expected then.

@ZairWazAnOldLady I would not go down the mobility car route again. It worries me that DD could have her mobility award changed at any time (not from need but some change in award calculation). We have also started a big cooking session, Italian Easter pie today. Hosting for 12 will be hard work but there is something very gratifying about having 12 of your people all under your roof.

what a difference today having DH off work and home. We have both fallen asleep twice so far. A glorious day of sleep tag ahead.

@HedgehogsAgree enjoy your sleep and cooking. An ACP is an advanced care plan. For children and young people they are often called child and young person’s advanced care plan (CYPACP). It is about planning care.

I might be a bit late to this, but there isn't a clear list or definition. It has to be a 'course of conduct' which as she already knows means 2 or more occasions alarming someone or causing them distress, but a lot of it is context dependent.

If I send my best friend three messages on her birthday, one saying "happy birthday," one saying "we've known each other so long you'll never get rid of me now lol" and a photo of her favourite flower (tulips), that is a really nice interaction between me and my friend.

If Betsy tells Adrian she never wants to hear from him again and she's scared of him, the police have recently taken no further action on a common assault where he was alleged to have swung a fist towards her (not making contact), and a month later on her birthday he sends three messages, one saying "happy birthday," one saying "you'll never get rid of me now lol" and a photo of tulips (which he knows were Betsy's mother's favourite and the ones she places monthly on her mother's grave) then that is a course of conduct which could amount to harassment, even though the facts of the messages are almost identical.

@ExistingonCoffee thank you for explaining. A difficult plan to make even with full support and finance from the system. I hope the hurdles are low and infrequent.

@RavenLaw hello 👋. Thank you. You’ve given a great example I will tell DD tomorrow to focus on the course of conduct and practice some context examples with her. I think it’s tricky for her as context of people’s actions often goes over her head IRL. Hope all is going well for you this Easter.

That sounds hopeful if your DS said interview was fine @NoHaudinMaWheest Hope he gets the job, the interview is already a great achievement.

Great news about carer @Lougle and long may it last.

Sorry about needing to appeal @ExistingonCoffee

Glad you got sleep @HedgehogsAgree

I put the bottles back in vanity so that solved that. We have to wait to see if company we bought off will help. We are managing with using bath OK but want it solved. Am seeing if worktop can dry out and I can save it by sanding, it's behind the sink so not visible in the room. Have managed to get boiler on a few times and dehumidifier to help dry things.

Cleaned DSs bathroom so whole house has been cleaned. Found a hb pencil in there which was interesting and noticed he had finished his toothpaste so we are getting him more. I cleaned the washing machine but ran a load including doormat and we now have error code. It's the mud in filters one, we can solve it easily but wish we had no mud. It should improve with turf coming next weekend and drier weather. DH and I went out and did garden, we spent 4 hours together, and have all paths complete, threw out some things, cleared leaves and started preparing for turf. Lots of lovely bulbs out and wandering silkies.

Got Easter cakes yesterday and DS has had 3 cinnamon buns, a melt in middle pudding and 1/3 of brownies but it's good as he's stick thin. He was in the shed when we went to the garden with his duvet and iPad. I said about our holiday and he put his head under pillow so I stopped. Then I told him pip was up for renewal at start of June (12 months before) and I had seen online best to have health visit. He went mad. He kicked the shed and made 2 holes in the wood and knocked part of the gutter off. I then said could do social care and that got a cushion thrown at me and equally hostile response. I said they can get you a flat if you would prefer to live elsewhere and he got annoyed again. Then I told him fine for him to live here forever and sorry, just worried about financing it but we will manage. He was then calm and sheepish. I gave him cushion back saying you love these cushions and was fine with that. Told him to stop destroying things. We threw out the bit of gutter as it had came unfixed anyway. The shed bits I put back and can be fixed with a few nails but may look into new sheds now. They are so pricey for the better ones with insulation, painted etc but our one looks old. I have no idea how we will do evidence for pip, we can obviously do a statement and write form for him and give camhs and key worker old things. GP would probably help but has never seen him as he won't leave house. He will refuse everything so it's going to be tricky. He should be way over it's proving it though now. Could go private but not sure won't have same issue as no consent or cooperation.

@Squirrelsandhedgehogs if it’s a renewal and not first time (like DD’s will be) I was hoping the original diagnosis letters etc would still be on record. Was DS’s in-patient on the last PIP application?