Where do you see your DC living as an adult?

[Lougle]

Hard conversation with one of DD1's carers today. She said that DD1 is always going to need supported living (I knew that) but that I'd be silly to look after her myself. That I should allow her to go into whatever care she needs and just continue to be her mother as an adult, not her carer.

I didn't think of it, tbh. Assumed she'd live with us as an adult. DH agrees with the carer.

What do you see for the future, for your DC? (I don't find this an easy subject. Does anyone, though?)

My youngest will probably live in a group home and my eldest will probably be in a supported flat.

I would never make them move out against their will, but I would support them to 6want^ to move out. I want them to have as much independence as possible. Other children grow up and move out - I want that experience for them too. Even though it will be moving from my care to support from others it will still be moving out of home, like everyone else. I think that's important.

It's really scary though, every fibre of me is screaming to keep them both with me forever and protect them. But I know I can't do that.

Mine will also stay with us. My little one will always need extra care and I feel she would get that best from us.

Tough question. Very tough, but.....

I am one of four. 2 of my siblings are still very dependent on my mother, one of them lives with her, the other on and off. They are in their 30s.

But they do leave the house and my mum gets a rest. At the moment our kids go to school. When they are adults what break will you have?

I'm not sure what the future holds for my Ds. I am working towards his independence. It probably isn't out of the question. But if my 2 NT siblings can't do it, then I am expecting my Ds to struggle with his additional difficulties. What is scary for me is that if he NEEDs a placement he may not be considered needy enough.

"What is scary for me is that if he NEEDs a placement he may not be considered needy enough."

That is my worry, Star. DH is so naive about it all. He says 'well we'll choose somewhere she'll be really happy, and she'll get support, blah...'

I think:

-She might not be deemed 'severe' enough for support.
-She might be offered completely inadequate 'support'.
-No-one will have her interests more at heart than us.
-By then I'll have fought so hard for her for so many years...will I be able to trust someone else to start fighting for her?
-She's a girl. What if she gets raped down some alleyway because she was able to convince her carers she's responsible enough to go out at night alone, etc.?

I suppose that will be a worry whatever level of support is required Lougle, as however independent our children are, there will always be a desire for support to be cost-effective and budget led.

But, have you thought about what happens if/when you are no longer around? Wouldn't you like to spend some years trying out and changing/refining her placement until she is in the most suitable place?

I am facing this in the next few years... and Starlight has hit it scary nail on the head... in order to get support without an EPIC battle your child has to have very severe difficulties indeed.

Mine is 15..moderate LDs, autism, hypotonic splint wearer, statemented, in special school, going on to a special needs course at college.Has Direct Payments. He can talk (his obsessions) he can read. But he can't tie his shoes, understand the value of money (tho he can count) .He can't make a meal..bear in mind he is 15, he can't choose suitable clothes.. or..or.. you get the picture. Yet according to our local SS he is TOO ABLE to get support.

Their cut off (which may be illegal..I'm working on finding out) is an IQ of 70. Probably DS2's is above that..marginally... but his autism makes his IQ totally bloody irrelevant as far as his ability to function is concerned.

Yet he may be too able...

We love him but don't want him to be at home with aging parents forever.. and we don't feel his siblings should have to care for him even though they love him. We want what he needs..supported independence. But fighting for it is going to be an almighty task:(:(

Budgets, not our children, take priority EVERY TIME. It makes me so so angry and worried, as for my son the future is only a couple of years away:(

Dp thinks the children will continue to live at home as he dislikes them being cared for by strangers. I understand his feelings but am also v conscious we will not be around for ever and want to ensure that they can manage without us and also that they are in a placement that is caring and where they can be happy. I am very aware that this will be the next big nightmare. I don't think about it too much as it is frightening but also am desperate to ensure their future happiness.

I wonder about this a lot as DS is terrified of growing up and has declared he always wants to live with me.

I would ideally want him to have the experiences his peers have of moving out, having some sort of social life, etc. Whether or not this is a pipe dream remains to be seen. He's only 7 and I don't know how he will progress.

I have recently applied to be assessed by social services and one of my reasonings long term is that he will then have a long term file with them as he grows up stating his care needs and what support he has had.

My eldest BIL has some LDs as well as, I suspect, having an ASD. He is undiagnosed. (Which makes me cross TBH as I know that when we started having problems with DS and I mentioned that an Ed P was going to go to hus nursery to observe him my PILs mentioned that they'd been offered help with BIL and the'y refused it...... BIL is depressed and I suspect that a greater understanding of his condition might just have helped..).
He lived at home long after the others left (my DH is 1 of 4). However, he was able enough to make it untenable for his mother so now he has his own house but is supported by his parents - he goes to them for most of his meals and his mum provided things for the freezer for the nights he doesn't. However, his parents are now beconing increasingly frail, my FIL had a stroke a few months ago and I worry what will happen to BIL when they can no longer care for him. He cannot manage money at all and is very vulnerable. We have had to set up a thing on the deeds of his house that it cannot be sold without either his parents or one of his siblings being contacted as he nearly tied it up in one of those you get the money but live in the house schemes...
He is better when he 'works' and was involved in a charity that was renovating buildings. He now does gardening for another charity.
I looked at one of the villages that does supported living but the rest of the family got cross with me so they refused to even look at the leaflets.... They don't seem to see how much support he needs because every one plays it down.
We were there for a few days over the summer and I was struck at just how frail his parents were. I know he's not my brother and it isn't my choice but I do feel they need to start thinking about options because BIL will not cope without support......

My DD is coming up to her 18th birthday. She is very severely disabled, so definitely meets any criteria for support - although don't yet know if that is Social Care or Continuing Health Care. However, we can't find a suitable place for her to go for a few nights a year overnight respite, let alone a residential placement. She has been going to a children's hospice for respite since she was 2 (whichis a fantastic place), but the adult hospice sysytem doesn't provide the same sort of service, so she can't go there. Nursing/Care homes are full of old people or people with dementia, which is not a suitable setting for an 18 year old, and most other care facilities are for young adults with Learning Disabilities who are far more able than DD, and those places can't meet DD's medical needs anyway. So even when you have a young person who is disabled enough - there are limited/no opportunities.

I'm sure there would be suitable places in other parts of the country, but it will be a difficult enough decision to place DD in someone elses care, without her being a 2 hr drive away. She has been my life for the last nearly 18 yrs, so I can see litlle option but for her to stay at home with us.

Thank you all for your replies. Sobering and thought-provoking.

I worry about this a lot. It is a struggle for any parent as I think it is a myth that there is a type of disability that the system provides ready answers for and the goalposts change so often it feels at times that there is no pitch left.

I don't know if this helps in any way.

I have a brother with cerebral palsy and learning difficulties. He lived with my mum for 42 years. There was never any suggestion he would live elsewhere. My mum felt it was her 'duty'.

My mum died and he was supported by my stepdad.

My step dad became to ill to look after him.

I arranged for my brother to move near me. He lives in supported accomodation. He has a work placement, a bank account, help to cook his own meals. He does his own washing. He has had a girlfriend! Sometimes, he even declines our invites to go out at the weekend or stay.

I suppose what I am trying to say is he has a life and a quality of life my mum would never have dreamed of for him. Just in case that helps!

I agree with Hecate that I would encourage my daughter to want to move out and have that independence and also for systems to be in place whilst I was still around.

In my ideal world I want her to live in a lovely Camphill type community.

Appropriately employed, your post is fantastic and can give all of us hope for the future for our children.

I've been worrying about this recently. Early on I assumed ds1 would just live with us and this was backed up by the fact that lots of nt children are having to live at home well into their 30's these days.

The older he gets though, the more I am starting to realise that it wouldn't be good for either him or us. I'm not worried about him being able to get a job and pay his way, as we are working with him to help him obtain the skills he'll need to be a computer programmer. I am however worried about his ability to organise his life, pay his bills and not get fired for shouting at the boss etc.

In my ideal world we would live somewhere with an annexe that had a completely separate entrance, so that I could keep an eye on him and 'be there' but not try to run his life for him.

Realistically we are most likely to end up staying in this house, thanks to a lovely trap caused by joint-inheritance and trusts that means we will have to take a massive mortgage very late in life. So, I think our next option would be to keep an eye out and at some opportune moment try to invest in one of the small maisonnettes or flats that are on a lovely quiet street a couple of streets away from our house. I would hope that we can help to learn how to run and manage his life with some help from his siblings, by the time we are no longer around to do it ourselves, but who knows what the reality will be.

The truth is that he is too high functioning to qualify for any support from the state, so it's down to us to find a way to enable him to live some sort of independent life and to hope that his siblings will still be both local and willing enough to help support him when we are gone.

I am afraid DH and I have bottled out. Our eldest 32, 28, 24 are living with us and will continue to do so. When we are no longer here we have friends in their 40's who will care (brilliantly) for them in their home.
The youngest 2, 13 & 7, the couple will have DD who is 7 but DS sadly will have to go into a SENSE home due to his complex needs----he scares me frequently.
But with all 5 and their health needs I cannot predict their future.
I am not saying we are right but these are our feelings.
Good luck to you all it is probably be the hardest decision you will ever have to make

My DS is only 3 but I already worry about this a lot, I have no idea what kind of living situation he will need when he is older but what I do know is that I will keep him at home with me (should he not be able to live independently) for as long as possibile. The problem, and the cause for cold sweats at night, is that I am already 49 and so basically will probably not be around for most of his life, whatever happens. He has two older stepsisters but the youngest of them is 16 years older than he is, so they won't be around his whole life either. Still, perhaps I am trying to borrow trouble too far ahead for now...

theDudesmummy Iam 69 DD7 I am not planning to go anywhere yet.I may be sticking my head in the sand but I take 1 day at a time please enjoy what ever time you have. We don't know what is ahead, thank goodness, I would be a drivelling wreck

Yes that is a good approach (although have also taken some of the practical approach, ensured adequate pensions, life insurance, income protection insurance etc). When DS was first diagnosed I got very low about this kind of thing, worrying about what his life will bring him and how old I am, but you can't worry about that all the time or you would get nothing done in the here and now! Last year's summer holiday I hated as I spent the whole time thinking "when DS is the age I am now he will be sitting between four grey walls of an institution and never having a lovely sea holiday like we do now", this year i suppose I have moved on a bit and realise you cannot think too far ahead, who knows what the future will hold for any of us...There is just too much to worry about you can't do it all!

If your DC has very severe difficulties where it's obvious that high levels of life long support will be required then you're probably correct to worry about the future.

But I think that some of you may be being unnecessarily pessimistic.

I was told in 2005 by his clinical psychologist that DS was "unlikely to ever be able to lead a fully independant life".

FF to 2012. He drives, he has a girlfriend, he's at Uni...

OK he still has many problems, but as time marches on and he becomes more mature he is starting to do things I could never have dreamt he would even attempt back in 2005.

So don't waste time worrying about the future - you may be pleasantly surprised.

DS1 will need 24 hour care.

I had hoped that he could move onto a residential 'adult school' style placement. But the one I had my eyes on (Coombe House) shut. He needs to be kept very busy and in many situations needs 2:1 support - i.e. he needs 2 carers. In the community 1:1 is a bare minimum. I worry about what is available for him as good quality care is expensive. If there is a decent day placement I'm happy for his to be at home, but I've not been impressed with what I've seen locally.

Transition planning actually starts this year, I will be drawing up my battle lines wth SS and making it very clear what is NOT acceptable.

I just dont know, but I hope to treat them both as equally as I can. Both ds's (the nt & the sn one) will always have a home with us but when the time comes if they chose to move out we will do everything we can to help them fly the nest.
DS2 is likely to always need some sort of supported living & I hope when we are no longer around that his brother & other family members will always look out for him but not look after him IYKWIM.

I hope he does exceed all expectations but realistically supported living accommodation would be a fantastic outcome.

The thought terriffies the life out of me, i know i wont be here forever.... then what? DS will almost certainly never live independently, though never say never. He is only 11 but requires 24 hour care. Severe autism, GDD, catatonia in autism, low muscle tone, pica and possible tourettes, no communication, very little understanding. Who will ever love my boy like i do and have his best interests at heart. As long as im able i will keep him at home, though he is extremely difficult for me now and im only 42 so who knows. He is in specialist hospital for reassessment just now and has 3 carers with him 24/7 so the older we both get, who knows. Ideally want to have him at home if not would need to be somewhere local and he would have 24 hour care. My 23 year old cousin has autism and has moderate difficulties similar to Medusa ds, he is in his own flat with 24 hour carers and goes home to my aunt every other weekend and goes on holiday once a year with his mum. So i try to take each day at a time and not worry too much about future because makes me ill and i may not be able to control what happens in any case x

It's not her general ability that makes me think she'll need support. She has no functional risk management. It hasn't improved noticeably in the last 4 years. She is so impulsive.