Just confirmed my family have planned my life for me

mumps

TheDoolallyDilly wrote: »

I agree. I have cared for my son who has a severe learning disability since he was born (obviously!). I'm bombing towards 50 now, and I'm tired - he's away at college during term times now and I am trying to fit 19 years of my life that I missed into the 3 years he is at college. He'll be back and that'll be the end of evenings out and time to relax. I am, frankly, frustrated at not having had a 'proper' life of my own. My parents are in their 80s, fortunately still able to sort out their own bills, have Tesco deliver etc, but what happens when they can't. I'm their only child ...



I agree.

I think the only thing you can do is your best and sometimes with children or parents it means making other arrangements. It must be particularly hard when you are caught in the middle, I hope things work out for you and you get some support. Enjoy your three years, I am sure he will be enjoying himself.

mumps

moneyistooshorttomention wrote: »

Doolally



edit: Camphill Villages - are they a way forward for you? Remember being quite impressed when I read about them ages ago.

I have heard good things about Camphill as well, from people who have worked for them.

TheDoolallyDilly

We looked at Camphill Mount Community college for him - lovely but didn't allow computers. DS loves Skyping us every weekend.

We have been told in no uncertain terms by our local authority that there is no funding/money for our son to live in any sort of supported accommodation in the community. He has to come home. He will get a 'package' of daycare.

mumps

TheDoolallyDilly wrote: »

We looked at Camphill Mount Community college for him - lovely but didn't allow computers. DS loves Skyping us every weekend.

We have been told in no uncertain terms by our local authority that there is no funding/money for our son to live in any sort of supported accommodation in the community. He has to come home. He will get a 'package' of daycare.

I hope things work out OK, has he been at college long? Funding is so tight now but perhaps in three years it will change. I know from experience how quickly things can change, a bit of a rollercoaster.

TheDoolallyDilly

He's in his second year, leaves in July 2014. I fear the funding will be worse then! I've heard they won't even be funding for specialist colleges soon.

chewynut

moneyistooshorttomention wrote: »

Thank you:T

No sooner said than done - an email has pinged its way over to them already with a couple of queries about this and requesting a brochure.

I can see that my parents could afford to buy one of those places from the money tied-up in their current house:D. What I'm not sure of is whether they could afford the level of service charges and what guaranties there are about there being no "real" price increases above inflation on them. Also it is in another area of the country to them and I have asked if non-locals are allowed to live there and whether they know of similar elsewhere in the country. The fact that they could afford the buying price of a place there doesn't necessarily mean they could afford a similar one in our area of the country (because it's much more expensive here) - so I think the main thing would be whether they allow non-locals there and whether my parents would be prepared to move to elsewhere in the country (now THAT is a biggie - bearing in mind just how attached they are to our area of the country!!).

Sounds like it will suit your grandad well and I hope he is happy there.

Thank you. We're all counting down the days until he can move in because he'll be able to have a shower by himself and we won't need to do an eighty mile round trip for every 'little' issue like his ramp has broken - since he won't need his rickety ramp to get inside his house anymore.

The one thing my parents did was to keep in contact with Trident. From day one of construction they've been there, asking questions and lurking and bugging his care people to ensure that he got the flat he wanted (of course it had to be the very last flat the builders were using as an office) and he gets to move in ASAP. It's been a lot of hard work for them but it is going to pay off. That's a big motivational factor.

He's had to put his council house towards the apartment which has upset him because he's lived there all his life. But he's got to the point where he's so lonely and can't move in his pokey little house (that hasn't been touched since my grandmother died in '97) that HE is pushing to move in.

It makes a very big difference when they actually want to help themselves rather than saying 'no, I don't want to buy a mobility scooter' or 'no, I don't want to get rid of all the furniture I've broken anyway because I can't get the scooter around it'. I hope your parents never get to the point where they feel so lonely and stuck in their own house that they're desperate to move out...but you know...from a carer's perspective it helps when they actually want to make their lives easier

Poppy9

TheDoolallyDilly wrote: »

We looked at Camphill Mount Community college for him - lovely but didn't allow computers. DS loves Skyping us every weekend.

We have been told in no uncertain terms by our local authority that there is no funding/money for our son to live in any sort of supported accommodation in the community. He has to come home. He will get a 'package' of daycare.

Your son is now an adult so surely he doesn't have to come home if he doesn't want to? If he is enjoying living independently then surely SS have a duty to help facilitate that as he is a vunerable person.

What would happen if you tell SS that you will not have him back home? Are there supported living providers within your area? I used to work SS and from memory residents in supported living had benefits paid directly (Independence living fund but this is now closed to new applicants so not sure if it's been replaced) to provider via SS as some rule meant it couldn't go direct to them.

Reading some stories on this site is awful, that there is such a lack of support to parents with disabled adult children and that they have a battle and fight the system.

Does the college your son currently attends provide any support for college leavers as they must know what the problems and issues are and could maybe point you in the right direction.

moneyistooshorttomention

TheDoolallyDilly wrote: »

We looked at Camphill Mount Community college for him - lovely but didn't allow computers. DS loves Skyping us every weekend.

We have been told in no uncertain terms by our local authority that there is no funding/money for our son to live in any sort of supported accommodation in the community. He has to come home. He will get a 'package' of daycare.

Sounds odd about not allowing computers - don't know if that's part of the philosophy (now racking brains and don't actually recall any computers in evidence anywhere when I was shown round a Steiner primary school recently....hadn't struck me at the time...). Guess there's always the possibility of supplying him with an Ipad surreptitiously (maybe they are okay about personal computers or, if they aren't, don't know whether he would be capable of "keeping it quiet" that he had one hidden in his room).

Maybe their concern is re the "wireless" aspect of the way some people use computers (ie the attendant health concerns of wireless internet) and not re computers per se? Obviously there are ways round that wireless bit - my computer is all "wired-up" in standard way and not wireless and I have recently bought an Ipad as back-up (but it's one with 3G as well). Havent had time yet to get round to familiarising myself with the Ipad (all that house decorating and decluttering...) - but seem to recall there were two levels of Ipad I could have bought (cheaper with wireless access only and dearer with 3G access and I deliberately chose the 3G access - as I dont use wireless because of those health concerns). My memory may be deceiving me on this - as at the moment its full of things like paint rollers v. paint pads v. having given up on one room and I'm just going to "throw money at it" and pay a decorator.....

But the local authority insisting that he won't be provided with "accommodation in the community" is a huge problem. What do they think would happen if there simply weren't any parents available to provide him with accommodation or those parents were divorced and trying to live in shared rented accommodation? Are the local authority making their plans specifically based on knowing he does have parents and they are together and living in a reasonable home of their own? Will they still be thinking this way even once he reaches 25 (ie the likely age that everyone will be forced to stay living in the parental home until unless they have found a reasonably-paying job to cover rent/mortgage)?

TheDoolallyDilly

The no computer thing is part of the overall philosophy, I think.

If something happened and I couldn't look after my son, or when we get too old to be able to, then something would be done. Probably too late/done in a rush/not preparing my son properly. When he leaves college he will, in my opinion, be as ready as he'll ever be to live away from us, albeit with considerable support. Once he is home, he will gradually get less and less able/willing. Incredibly, indescribably short-sighted of my local council :-(

Anyway, enough of me, this is your thread!

margaretclare

mumps wrote: »

My husband is computer mad and finds the term silver surfer patronising, we are all different.

I didn't use it originally, someone else did. Jazabelle IIRC. You really do love to pick up on everything I write. Can't stay long. Lovely day outside and we're going into the Preseli Hills now the mist has cleared away.