To dread my future with DD

[Sunshinegirls]

My youngest DD has a lifelong genetic condition which means she will never be able to live independently and will always need organised and looked after as she has a learning disability and is vulnerable.
I'm not a young Mum.
I try not to think about the future too much but I feel the weight of it all the same.
At the moment she's young, she goes to school so I get a break while she is there and am fairly well supported by the system.
But I dread her adulthood. We live rurally and the nearest city/town is over an hour away, nearest village with buses etc is 20 minutes.
I just don't know how I am going to cope, there will be no respite.
Is there anyone with adult DC's in a similar situation that can advise me on how to cope?

Just wanted to offer a handhold OP
Are you entitled to any home care to give you some respite once a day/week?

I remember Rosa Monckton (whose DD has Down's Syndrome) did a documentary a while back about planning for the future when you have a disabled DC. She was looking around at assisted living facilities where young disabled people can live as a community with carers on site, etc. Would investigating what is available within, say, an hour of two of where you live make you feel better about the future? It is certainly unrealistic to expect that you will be able to care for your DD forever, and presumably at some point she may wish to live a more independent life herself. Planning for a time when you may be too old or infirm to support her would be wise, as well as give you peace of mind.

Monckton Website

I too would urge you to look carefully at assisted living schemes. There are quite a few out there and some are excellent. Alternatively you might want to consider moving to a less rural location when she gets older so more support and facilities are close to you.

Not me personally but I have a friend in a similar position (her son is older 16) again she's looking into supportive living.

Although he has actually turned round and shocked her by deciding he wanted to do a certain college course for two years. It wasn't something she ever thought he'd do and has give her another 2 years bit of respite.

Thanks for that link Juneau, i am worried about the future of assisted living schemes as is Rosa Monckton, these facilities are getting closed and the one nearest me is private and costs a huge amount of money. We are trying to work very hard now to try and improve our financial situation so that when the time comes we can afford whatever help we need. The government is slowly but surely destroying and sabotaging our social care system. It's so worrying.

That's amazing unborn, our kids can really surprise us

Special needs young adults can be funded in college courses up to 25 and there is a variety of courses available which will aid her in independence. You don't state the age of your daughter but if she is in secondary school it might be worth looking into now.

She's 7 cantspell, thanks, I will look into that, that sounds very encouraging

One of my cousins has LD and like cantspell2 said, she attended college till 25 and did lots of "life skills" courses. Things like using a bus, going to the shop and learning to self-advocate as much as possible. The college also worked with local firms to give work experience to those who had the assessed capability. She is now in her 40s and does voluntary work 3 days a week in a day centre for the elderly, helping serve meals and play games.

I think your idea of working as much as possible now to sock as much cash away is brilliant. But I would second the idea about exploring a move to a town or city where you would be nearer support and DD could explore independence more when the time comes.

I also think - and my child has autism so I KNOW how difficult this is - you have to try and live in the moment to an extent. The future will be what it will be, you can control it to an extent, but you can't allow the fear or it to swallow up your present. Are there any support groups for parents near you? We got a dog which means I'm out walking twice a day, usually alone. I think it's saved my sanity, to be honest.

I share your worries sunshine

I dont think my eldest son is likely to live independently, Ive kind of come to terms with it. Ive had supported living mentioned to me, but I dont know how I feel about it, and like you say, a lot of them are being closed down anyway. Id be very surprised if we have the limited social security and community support services we have even now, in a few years time. Certainly not under this government.

If I were you, Id strongly consider moving somewhere less rural so youre not as isolated as she grows older

As she is only 7 you have plenty of time to plan ahead. Is she in a special needs school are are you planning for a special needs secondary? My oldest transferred to special needs at around 7ish and he completed his education at a special needs school. He stayed there until 17 with the option of staying until 19 but wished to go to college. He complete a 2 year independent living and introduction to work course but had the option to stay on further but didn't want to. As part of his course he did 1 day a week in work experience for the 2 years and learnt such things as money management, using public transport, preparing a meal. He is now 21 and even through he is still at home I am more confident that is and when something happens to me he will be in a better position to cope.
He wants to work and there is jobs he would be able to do but getting someone to take a chance on him is hard. Employers still seem to look for round pegs to fit in round holes and it seems even with all the disability legislation they can still ignore his applications. But that is a topic for another thread.

My cousin (now 44) has severe LDs, and for the last 10 years has lived in a supported living home with 3 other people with LDs. They have 24 hour staff, and are supported to do as much as they can in terms of cooking etc and to go out and be part of the community - going to discos (special club night), concerts - she loves bands like Steps, and to other activities.
Her mum and dad still take her on holiday, out for the day, and she can go and see them at home, stay over etc - but her mum said that she needed to know that she would be OK as they got older, and that settling her into care needed to happen way before it had to happen.
I think my cousin stayed at college doing life skills courses till she was 25 as others have said

One of my brothers-in-law has LD and is unable to live independently. He's 35 now and lives at home with MIL (assisted living was never discussed- she's very protective). He was at college until 25 and took life skills courses alongside a variety of art courses (he's very talented). They live in a small town, which is limiting because transport links to larger places are poor, so he is reliant on MIL for that, but the bonus is that he is able to be pretty independent day-to-day, within a very safe community that he knows well and in which he is well known. He does voluntary work 3 days a week and is very active in the local arts scene. He's also an amazing uncle to my two DSs, who absolutely adore him.

We dont live in a country where we could expect any kind of help. Nothing by way services means just that. Absolutely Nothing. Everything, including my adult sons team of 5 round the clock carers has been funded by his dad who had to start a second career after his retired from his first one. It has been extremely successful. My sons future is assured barring unrest where we live but what worries me right now is the fact that at almost 60 Ive very much aware of my own mortality and Im really upset at the prospect of leaving him one day. Will he be on his own? No. He has all of his sibling who'll look after him. His dad is no longer part of our life. Ive been really emotional about my boy since my last birthday a few months ago, and his a few weeks later. I need to kick myself up the backside but I might go for a counselling session so I can just cry my bloody eyes out without fear of being heard at home and upsetting my other children who I want to protect as long as I can. Im Sorry to be such a bomb on the thread.

My brother is severely autistic and my Mum has flat refused to send him to live elsewhere. He doesn't even go for overnight respite ever.

He does go out to 'work' 4 days a week. Actually a team of three carers that take him out.

He's 24 now. He's 6 foot, built like a brick shit house and can at times be very aggressive. He's pretty much non verbal and has a lot of behaviour issues.

My Mum also lives in the middle of nowhere. Her nearest neighbour is a 10 minute drive away.

You WILL get respite. You will have to fight tooth and nail to get the money and care you need (a good social worker is key in this) but you will get support.

My Mum actually gets direct funding for my brother's care and transport. It took her years and a fucking great fight but he gets the care he needs and she chooses exactly how it works.

He's 24 now. He's 6 foot, built like a brick shit house and can at times be very aggressive. He's pretty much non verbal and has a lot of behaviour issues.

I think I know his much taller kindred spirit

My sons aggression is mostly caused by the epilepsy he also has as well as his Tourettes.

Rhubarb - hat off to you, my Mum and all parents coping. It's a very different life. My Mum wouldn't say she'd have chosen a different one as he brings us so much joy and laughter in ways we'd never have had but due to his aggression she doesn't feel she can be in a relationship again which I think is heartbreaking.

to all of you who cope with such challenges. A friend of ours has a son with brain injuries after experimenting with drugs once to often. I know she copes well now, he is in an assisted light bing place, but we all weep for his future after she is gone.

Another hand hold here, Sunshine - I've been through this with my DS (now 29) and understand only too well

It's actually a wonderful thing that you're thinking of this now and have plenty of time to plan - especially important as the very last thing you need is to have to make arrangements in some sort of crisis, such as when you're much older yourself and less able to cope. This would be traumatic not only for you but for your DD too, as plans made calmly usually work best

The route we took was a specialist college from 17 to 20, then supported living in a shared flat ... which has since turned into DS having a flat all of his own because he's made such brilliant progress. I still can't believe how far he's come, and you can perhaps imagine how I felt when he recently won a prize for the most progress in independence skills from 100+ service users

You're right to think of these things, but please don't ever despair over them ... trust me, there's "sunshine" on the horizon if you look hard enough for it

It would worry me too, OP

My little son is only 6 but is autistic and if I let myself think about it then I am petrified about the future - I worry about his brother becoming burdened with caring for him when we are no longer here. My sister has recently been through cancer treatment at the age of 30 and I am terrified that I will get really ill at a young age and not be here for him anymore. The only way I can cope is to block it out at present. He is young enough that for now we can focus on trying to help him be as independent as possible and see where that leads. He is exceptionally bright - off the chart in his literacy skills - but has very very severely impaired social functioning and lots of behavioural difficulties and anxiety problems. He is in special education. So I've no idea how it will pan out. It's so worrying isn't it?

*Rhubarb - hat off to you, my Mum and all parents coping. It's a very different life. My Mum wouldn't say she'd have chosen a different one as he brings us so much joy and laughter in ways we'd never have had but due to his aggression she doesn't feel she can be in a relationship again which I think is heartbreaking.

Loopey, I know exactly what you mean. My son is the meaning of happiness when he is having good day. He's food for the soul. As for mum not having another relationship - I dont find it heartbreaking because I feel exactly the same and I feel no sadness about it whatsoever. Im happy, I have good life. There's nothing more I want or need on a personal level. Your mum might feel the same and wouldn't want you to heartbroken about it. You sound like a lovely daughter to your mum and sister to your brother.