The Goose and Carrot Thread

[hibernatinghedgehog]

Everyone is welcome. The thread is deleted after 90 days.

@Lougle so soon! How exciting for you all. Poor DGPs with their worries but so unhelpful for you and dd1.

@SunriseSunsetz it depends on the individual circumstances and, to an extent, who is undertaking the review. Some will essentially need a completely new assessment. For others, it will be a light-touch review.

@Lougle as hard as it is to hear that, it must also be a relief that people are starting to listen to you and realise DD1 needs support. I really hope the placement helps.

@SunriseSunsetz in my experience, they will take the badly drafted first assessment, try to amend it be splicing new sentences on top of old ones, and throw in some 'She's' instead of 'He's' and change your name from Susan to Sally. You need to see it a bit like EHCP/PIP - anything vaguely positive will be used to justify a lack of provision. So you need to be really clear about how much support DS is needing, how tired you are, and how disastrous it would be if you were to fall ill because you were unsupported. Then they might offer you a couple more hours of support, and they might agree to the higher rate for you PA because they know how expensive it would be to take over. Sorry if I sound cynical.

@hibernatinghedgehog yes, I haven't been told much about the place, except that SS don't like to give places there. The psychologist said today that it's a mix of crisis placements, long-term residents who are too tricky for other settings (in their own unit within the unit), and places for assessment. She said it was 'as close to being a hospital as a non-hospital setting could be', so the resources are good. She admitted that DD1 wouldn't have got a place there without her saying that it was needed. So DD1 is very lucky really.

I think I'm still struggling to understand that when they say DD1 is tricky, they mean it. I've spent so long being made to think that I'm just rubbish and that any other parent would cope brilliantly, that I'm convinced that I'm exaggerating her needs.

I think you know they don’t really do that @Lougle

I’m not even really sure our direct payments are worth the time spent getting them. Ds only uses an hour and a half a week. He contributes about £50 a month and they do the rest. If we paid direct it would be about £120 a month, so for the sake of £70 a month we have to do about an hours admin. I would love him to do more outside the home but it hasn’t happened so maybe we should just stop??? I don’t know, perhaps I’m just in a grump.

When DD1 was coming upto leaving FE college, SS had to do a reassessment of need, as hers only made provisions for college holidays at home and we were looking at a long term full time placement.

The SW just took the existing assessment and cut big chunks of needs out! I sought JR. DD1 was given a new, but very experienced SW. He said, he preferred to talk to me, than have their legal department talking to my solicitors. He gave me, everything I wanted - and he had the influence at SS to get it. However, I was very lucky there.

@Lougle you have been dismissed for so long and by so many people who should have known better it is bound to have an effect on you. It is like imposter syndrome, isn’t it?

@SunriseSunsetz personally, I would carry on with social care support. Far easier to remain in the system than need it in the future and have to restart. Would DS engage with a PA at home? If you want to stick with social care support but don’t want DPs, you don’t have to have DPs.

I think a PA at home wouldn’t work. The problem is he’s really not well enough to go out and about. I’ll try again in a week or so. He has responded really well to his laminator and using the printer. What I really need is a cleaner then I’d have more time to prep things to do. There’s a place in town that looks very promising for days or mornings/afternoons activities but they have now failed to “get back to me” twice and it doesn’t inspire confidence, but he couldn’t do that now. Is it weird to ask them for the meeting not to be in our house? There isn’t really room with all the building and dh wfh and ds will hate it.

@SunriseSunsetz It is fine to ask for the review to be held outside the home.

Social care won’t advertise it, but a carer’s assessment can result in funding for a cleaner.

@SunriseSunsetz if you are saying that SS don't really do that with reports and need for care, they absolutely do in my case. I have the written assessments that do all of the things I've stated. I had an assessment when DD1 was 3, where they saw her attempting to sprinkle sand in her baby sister's eyes, climbing with no regard for safety, ignoring all adult intervention, etc., and they wrote that she was a happy child who enjoyed adult attention. It's no matter though.

In terms of meeting outside the house, yes, I've often insisted because home is her safe space. They grumble about needing to see the environment, but concede. The SW is coming to the house on Monday but I have to go out 30 minutes after she's arriving, so I know the visit will be short.

I totally get the not well enough bit - DD1 has been in the same situation for a long time.

Yes, SS offered me £75 per week for a cleaner about 12 years ago. Unfortunately, I was so overwhelmed at the time, I didn’t have the wherewithal to find a cleaner!

I meant they wouldn’t provide all that if you’d somehow managed to misrepresent who she was @Lougle . Contrary to blasted news reporting they don’t give unnecessary help at all.

I'm deeply sorry. I'm feeling so defensive at the moment that I thought you were saying that SS don't minimise needs. I think I'm dissolving. So very sorry. Truly.

I'd be too embarrassed to let a cleaner in right now. Dog hair everywhere. Chaos. I've been drowning for a while.

@Lougle no need to apologise. I think my posts are an often a bit confusing. I’m desperately worried and tired and garbled answerphone messages suggesting meetings I have to host are not helping. I’m not sure how others use their homes but ours works for the people who live here. Setting aside hours to use a whole downstairs room in the middle of the working week isn’t easy at all. We wfh, there are meetings, many of them are very confidential, then there’s ds who has his own life going on and the rest of us who are washing and laundering and cleaning, plus animals and then the building work outside. At the moment it’s very busy. I can always rearrange things but not easily and frankly I don’t want to. I am sick to the back teeth of putting in hours of work and inconveniencing my family. I get the safeguarding side of visiting but I don’t think that’s what’s motivating them.

I'd be really blunt. Say "The house is in chaos with building work and we work from home, so every space is used. DS finds having outside people in his home distressing. I'm very willing to meet to review the care plan but we can't meet at our home. Please suggest a suitable venue."

DD1 was worried that she likes hugs when she's upset. I've told her that hugs never go away. I'm sure this is right for her but I'm finding the anticipatory anxiety from all sides difficult to cope with, especially as DPs don't seem able to put aside their own worries to support me.

@SunriseSunsetz you have to do what is right for you. I prefer meetings/appointments at home where possible, but if that doesn’t work for you, tell them.

For me, home meetings/appointments mean they use less of my time because I’m not the one having to do the travelling. (Travel will become even more of a focus from the next Motability lease with the reduced mileage. We will be over anyway.) It means I don’t have to find a parking space. Some meetings held at home would otherwise be in places where parking can be problematic, especially DS1’s vehicle and particularly if DS1 &/or DS3 (DS1 more-so than DS3) are attending. DS1&3 are also more likely to be regulated at home. And for those meetings/appointments where DSs are present, home means I don’t have to think about waiting rooms. And for DS1 it means I don’t need to consider where to change him if he needs changing - not all the places the meetings/appointments would be have a changing places toilet or one nearby.

@Lougle your eldest child is leaving home, that’s a massive first for you. A couple of years ago we chatted about what it all means and how might it happen and I had no idea what could be possible. Thanks for sharing.

@drspouse dear goose we are still thinking of you.

I’m thinking of you too drspouse. Keep going.

@hibernatinghedgehog I can see that home would be infinitely easier for you and your ds’s. Here it’s more difficult. But even if the very real obstacles were disappeared in a blink (and they can’t be) I don’t want meetings in my home, particularly announced as I will visit on X or Y day, as though my home is a facility to be utilised by anyone. It offends me. I have to put an enormous amount of effort into not feeling very very cross. Part of the problem is my upbringing which was fairly strict and I just find it ill-mannered and then feel awful because obviously my expectations are different and these are the manners here and now, and part of the problem is my home is my last place that is “normal” and where ds is just ds not a huge problem for everyone and it makes it less normal and more changed by disability because my friends do not have people having meetings in their sitting rooms and they do not have to worry about their children being discussed loudly where relatives and builders and work colleagues and the child themselves may overhear details that are not and we don’t wish to be common knowledge.
How silly our boundaries are sometimes. If I was @Lougle I would use the new cabin as a meeting room and never have anyone but people I invite in my house.

Ds is clingy and unwell. He made me smile this evening as he tried to persuade me that there WAS room for him to sleep in between dh and I. He is very large so there is absolutely not. We are trying another step up on medication which means more sleepless nights. I need some corner shields for the bathroom and to spend some time making the house a bit safer, but I don’t seem to be getting much done. Driving all weekend. Pray the fitters are finished this week. Aaaaand my hoover has died.

@Lougle does she have a special soft toy? When I went to boarding school long long ago my mum sewed me a patchwork cushion with an extra tiny patch with a kiss under it. It helped. I think it is really important to know that homesickness is a real big thing that sweeps over you when you first go, but that it passes like a wave. She will feel it and you will feel it but if you hold on and keep busy it passes and it comes less and less. You may have to teach her how to wait or she may settle more easily. You’ve chosen this path for sound reasons and with love and hope. I think that’s a good thing. Honk honk

@drspouse also thinking of you this Saturday. Just another day but the days can be so long. I hope it is just the right amount of busy.

@SunriseSunsetz I feel exactly the same about people in the house. I hate it. I would use the cabin but it's chock full of all the stuff from the loft because the cavity wall insulation still isn't finished and I can't have DH spending another whole day hoovering insulation material off of our belongings.

DD1 has bear, a comforter with a padded head but soft floppy material body which she has had since infancy. She sleeps with him every night and we were given a wise tip to get multiples, so we have 3 identical bears to allow for washing. She also has Graham, a weighted goat toy that she bought in B&M a few nights ago. He is soft and velvety, and his legs are padded but his tummy is weighted. She sits him next to her and strokes his feet.

I don't do anticipation well. I'm better at just do it.

I have so many things I need to find out. I presume they'll transfer her care and to a more local GP service/pharmacy? We haven't been told anything about finances yet. I know that the she can keep a minimum of £31.80 per week. I'm hoping that they will also allow the £13 hydrotherapy cost and an amount to cover insurance of her power attachment and annual wheelchair service. I don't know how visiting works or...well, basically anything.