Nice people thread

carolt

I'm glad to hear our benefits system allows people like Sue to have a holiday too. I'd assumed it didn't cover important things and was largely wasted on the inessential.

treliac

Sue,

There is some information here that might help
http://docs.google.com/viewer?a=v&q=cache:uUkODjtzPwYJ:www.suffolk.gov.uk/NR/rdonlyres/0DDA58CD-1817-4B4F-9997-DB76729AC731/0/Carersgrant.pdf+suffolk+parent+carers+grant&hl=en&gl=uk&sig=AHIEtbSfnAc8BvVsHdruyQn2TYvK-uD9Bw

And have you been in touch with these?
http://www.onesuffolk.co.uk/SuffolkParentCarerNetwork

SingleSue

Aww thanks everyone...it really is quite embarrassing (there's my upbringing for you!) and overwhelming.

I'll have a think on the ebay suggestion, I don't want to be taking liberties but then I also don't want to look a gift horse in the mouth...although I think the Sun holidays are only available during term time and not school holidays which could take some organising now the boys are at High school, they get a bit funny about things like that.

We do have a tent in the loft ( a huge 6 berth jobby I got for my 18th and spent many a happy holiday in before children - we used to have parties after the camp club where umpteem drunk late teens and early 20's were trying to do the full lotus in the living area) but the last time we tried to use it for a 4 day holiday, more time was spent calming a completely freaked out youngest (he was trying to dig the tent down into the ground for security, wouldn't leave it, didn't want to stay in it, freaking at every little noise etc), it was no holiday...and that was with two of us.

As for how independent they will be? Well James should be ok to live alone, his is a physical disability and it should be very many years before he would really struggle to do things for himself, so no real worry there.

Middle son - Hard to say really, he has no sense of danger, he cannot deal with personal care as he forgets, thinks everyone is his friend even when they are being nasty to him, will eat himself into an early grave without control and would forget even the simplest of household tasks, he also has the capability to get extremely violent and aggressive at what he sees as someone winding him up (he could be something as simple as saying he needs to get dressed) so he would probably need some kind of supported living scheme if I am either not around or couldn't cope anymore.

Youngest - He also needs all his personal care organised, without prompts he would never change his clothes, or wash himself or his clothes. He would also never leave the house, never talk to strangers..he would basically shut himself away and I would imagine, find working where there are lots of people extremely difficult. I suppose he could be sort of independent but there would also be a need to be supported in his personal care.....with finances, he would absolutely fine.

I've tried for help in the past from social services but they were more interested in the domestic violence from hubby than supporting a carer.....so far, I have asked for two carers assessments and each time been promised one but nothing has happened. My GP tends to just want to put me on anti depressants. I am a member of Suffolk Carers just as James was a member of Suffolk Young Carers (he had some lovely days out with them when he was younger, then he became a typical teen and got bored) although I haven't spoken to them for some time...think I am scared of being labelled unable to cope or that the boys aren't disabled enough.

The something to do which was challenging was supposed to be the degree, it's certainly proving challenging...challenging actually having time to do it right now! It is chock a block appointments for all 3 boys now with more major ones coming up for James, there is barely a free day during the week and by the time night comes, I just want to sit and relax or sleep.


With regards paying for a carer, they are extremely expensive (looked at some once and they were in the region of £100 for an evening for just one child) and that is if they will accept middle son and his violence/aggression...several charities that cater for special needs and respite care around here won't touch him because of it but that was my ultimate aim with the degree, get the qualification, get a well paying job and get help.

I usually do cope well but it's all come at once especially the hammer blow that James is not medically normal, at least before that happened I could say I was able to produce something resembling normal.

wageslave

I can't be doing with prevarication.

In the absence of any better idea than Carols tent (much as the kindness is appreciated) here is what we are going to do....

We will use my ebay and paypal account. Someone (other than me) will take charge of putting the stuff up for sale and emailing everyone.

Who will take charge of seeing to the admin side?

LIR? Carol? SJay?

Don't look at me. I can't even work out an avatar never mind upload pics to ebay.

I want pledges for decent stuff.

Ladies to your cupboards please........

I think we need about 500 quid

lostinrates

wageslave wrote: »

I can't be doing with prevarication.

In the absence of any better idea that Carols tent (much as the kindness is appreciated) here is what we are going to do....

We will use my ebay and paypal account. Someone (other than me) will take charge of putting the stuff up for sale and emailing everyone.

Who will take charge of seeing to the admin side?

LIR? Carol? SJay?

Don't look at me. I can't even work out an avatar never mind upload pics to ebay.

I want pledges for decent stuff.

Ladies to your cupboards please........

I think we need about 500 quid

I can't work pay pal or pictures, let alone ebay.

I have a picture in my phone for the fashion chat, I've been trying to get it onto the bloody computer since sunday. It would be a next summer holiday....

StevieJ

treliac wrote: »

AFAIK 6th May is still only a suspicion. It's been mentioned lots but not confirmed, probably in case he decides impromptu on an earlier date... if his rising popularity deems it a good idea.

Seems pretty conclusive to me, a slip from Brownies buddy, besides it is friendly on the campaign budget

http://uk.news.yahoo.com/5/20100302/tuk-ed-balls-lets-slip-heavy-election-da-45dbed5.html

wageslave

lostinrates wrote: »

I can't work pay pal or pictures, let alone ebay.

I have a picture in my phone for the fashion chat, I've been trying to get it onto the bloody computer since sunday. It would be a next summer holiday....

Ok, we can bully someone else into taking charge. I have no problem bullying people.

What have you got worth ebaying?

treliac

SingleSue wrote: »

I've tried for help in the past from social services but they were more interested in the domestic violence from hubby than supporting a carer.....so far, I have asked for two carers assessments and each time been promised one but nothing has happened. My GP tends to just want to put me on anti depressants. I am a member of Suffolk Carers just as James was a member of Suffolk Young Carers (he had some lovely days out with them when he was younger, then he became a typical teen and got bored) although I haven't spoken to them for some time...think I am scared of being labelled unable to cope or that the boys aren't disabled enough.

Then you haven't had what you are entitled to. Perhaps the parent carer network would be more dynamic and would support you in getting a proper response?

GPs were given money by the govt, starting last April, to support carers. (This is in addition to the carers grant budget held by Social Services.) So it's fairly new and maybe not all GPs are operating the scheme as they should, but you are still entitled to support and should ask for it.

As far as relative disability / stresses are concerned. There are surely not too many adults trying, alone, to cope with the care of 3 children with disabilities as you are doing. Don't let anyone cast aspersions on you or your ability. You're doing a fantastic job. Again, the parent carer people will be able to understand at least some of what you have to contend with and should be supportive.

....

lostinrates

wageslave wrote: »

Ok, we can bully someone else into taking charge. I have no problem bullying people.

What have you got worth ebaying?

LOL, now that might be easier, we'll have a dig about for stuff....

edit: sue, what about e baying the tent too?

SingleSue

treliac wrote: »

Whatever Sue decides to do, she's entitled to a substantial amount of carers grant even if she takes her children and is still caring whilst she is on holiday.

PM me Sue, if you need any further information.

Blimey, I never even knew about a carers grant! I was even speaking to social services not 3 weeks ago about my caring role (after someone decided to be malicious and report me to them - SS did their checks and found the claims unfounded) and asking what assistance I could get and nothing was said at all - although they did give me some paint to do the house up with and got me a 2nd hand sofa from a charity shop.

I usually holiday at the same place my parents have a caravan so they can help with the children, unfortunately there is not the room in their van for all of us for more than a night (or two at a squeeze although we are usually ready to kill each other after that length of time :rotfl:) It has a swimming pool and a club house and a very handy cheap beach 2 miles down the road, so once we are there, it is a very cheap holiday. We generally don't go gallivanting around as youngest tends to try to climb out of the car (as we are moving) if we are going somewhere unfamiliar :eek:

Thanks everyone for your suggestions, it really is truly appreciated.