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?

[SukiTheDog]

Rhubarbgin am sending a virtual hug to you. Many (mostly Mums) are in this position and at 55 yrs of age, I have a 16 yr old who has asd and ocd. I'm finding, as the years go by, that it's harder and harder to look ahead. I've realised in the past few years that ds will be alone. He has no siblings. His dad has never understood his needs and rarely sees ds now. DS is high functioning but has severe social impairment so, with his wonderful vocabulary, he can express that he hates being autistic, is lonely and is "odd" (his words).

I have saved for ds even when money was very tight, when his dad first left. What I now gather is that the miney saved would hinder him in future as he now has substantial savings. I feel like I've shot myself in the foot with that one.

OP, you could try to get your dd to try lots of different activities and group things as a way of encouraging independence for the future. Having even one friend would have made a huge difference to my son. He has none. Not for want of trying, if you consider the stuff weve tried (beavers, scouts, football, table tennis club, footy, drama club, bowling).

I wish you luck. Please know, you're not alone. There are many of us in this position.

[Jux]

The house next door to us has been made into bedsits for adults with learning disabilities. There are autistic people, people with DS, and others whose exact dx I have no idea of - all sorts, in other words.

They have a live in carer, and other carers and therapists visit every day. In the summer, they dig out the barbecue and all congregate outside having fun. Sometimes, they all troop down to the local coffee shop and spend a few hours hanging out there.

Basically, they all seem to get on together OK, are known in the town, have pretty good sociial times. I am not privy to their lives but they all seem to lead fairly normal lives. Some have jobs, some don't.

My cousin has DS. He lives in sheltered hosing and works on a farm a few train stops away. He is nearly 50 and is independent of his family, but of course they are around for him if he wtants/needs them. In fact, I shall be holidaying with him and some of is siblings and their families later in the year. They do look after him, but he has space to do his own thing.

Try to help your dd to become as independent as possible. She can have a great life.

As for counselling, I think that's a great idea and will make a big difference to hiw you view things and how strong you feel. I have found counselling very helpful in just helping me pull apart the twisted threads in my life, and seeing a clear way through.

[Rhubarbginisnotasin]

I am considering counselling, as time goes on I can feel myself finding things harder, anxiety can be crippling when before I was pretty laid back. I spend a lot of time alone and I have retreated away from people over the past couple of years. It's time to try and change things so I'm strong for my daughter

Sunshine, its horrible, isn't it? But please be assured you're not alone in feeling as you do. In fact, I would be surprised if there was one person amongst us who'd never felt the same way.

Do you have family to talk to, friends?

Is there a support group near to you where you could talk to other parents?

And you know, whilst its great you want to be strong for your daughter its something youre allowed to do for yourself as well.

[Sunshinegirls]

I am considering counselling, as time goes on I can feel myself finding things harder, anxiety can be crippling when before I was pretty laid back. I spend a lot of time alone and I have retreated away from people over the past couple of years. It's time to try and change things so I'm strong for my daughter

[Sunshinegirls]

Thank you so much for all the replies, there's a lot of hope and positivity to take from your experiences. I know it's not going to be easy but with some preparation I can maybe smooth some of the bumps in the road ahead.

[nemno]

Thank you for the flowers Furry. I hope between you and the rest of the family you can support each other into a solution.

[FurryGiraffe]

* nemno* that sounds very tough.

We (DH, my other BILs, their partners and I) worry a lot about what will happen to my BIL when MIL is no longer here or is no longer able to care for him. MIL is very reluctant to have any kind of conversation about his future. On the one hand, I understand that it is a very painful subject for her to contemplate, but on the other, I can't help but feel that planning for the situation would make it easier for everyone when the time comes. Her instinct has always been to wrap him in cotton wool and take care of him, which I do understand, but I worry will not be in his best interests longer term. He lives with her at the moment, and is very settled in the community, so would be loath to live anywhere else, but I have no idea how he'd cope on his own, and his brothers all live 1 1/2- 4 hours away. It's a worry for all of us.

[nemno]

Those of you thinking and planning early are doing exactly the right thing. I have recently lost my parents and am watching with unease what is happening with my LD sister. My mum refused most help and actually even withdrew my sister from SS intervention. When she died my dad got SS involved again but since his death my sister refuses their help.

The main problem other than her lack of cooperation is that she is set up in a small flat very near my parents' house. My folks looked after all practical issues and were always on hand. Because DSis 'owns' (part in trust) a flat she gets little financial help and I can see why SS won't push her into the high cost residential care which she needs. My sis has on the one hand too many assets for help but on the other nothing like enough to buy-in assistance.

DS lies to me and pays no attention to my advice. I have no idea what crisis will prompt a change but in the meantime she is gaining weight rapidly, her teeth are getting into a state and so is her flat.

[dangermouseisace]

sunshine I spent years working with adults with learning disabilities. I loved my job- I hadn't intended to stay long but I did. Most of the clients had loving families who they saw regularly/stayed with them sometimes. It was not expected that they live with their parents forever. Many of the people I worked with moved out of the family home when they were still teenagers.

There are many, many charities, supported living schemes and homes out there. Even though the Tories are trying to kill things off it is still expected that adults with learning disabilities should be able to have choices about where they live, what they do, and who supports them. When your daughter gets older, if she wants to live someone else funding for her care/support will be based on her income, not your income. Local authorities pay for private homes/organisations- there aren't very many local authority ones left to be honest. Usually there is flexibility with the cost depending on the person's need. If a person has really high needs then a placement will be more expensive. When your daughter gets older a social worker will be able to look at those options with you. Also there are still college courses, day centres and jobs for adults with learning disabilities. Maybe when your daughter gets older she would like to live somewhere where it is easier to get around.

I can see how this would be a huge worry for you. But there are still things out there, and funding can go UP as well as down. Really, the Tories have cut social care so it is falling apart but people have started to get really cheesed off and they've been shown that in the disastrous general election (for them). Hopefully things will start to change soon, for the better.

[GandolfBold]

I know how you feel OP. My DS is 10 now and probably wont live independently. Its really hard to not think about the future.

Have you thought of counselling? I had some CNT to try and stop my anxiety and it has helped. I am trying harder to focus on today, and what we can do for today.

I agree with regards to what social care will be available in 10 years time (although its the area I work in so I am hoping it might still be around). I also agree that considering moving might be a good option

[joannegrady90]

Hi op

Not much advice but I work with adults with conditions such as your DD.

I can give specifics obviously but lots of people we support live independently with us then come home on weekends. They are supported 24 hours.

We also take them in holidays etc.

Even though you may live rurally we also have transport that takes them out daily and returns them.

Please don't try to worry the people we support have fantastic lives and I'm sure it will be easier once your DD is grown.

Feel free to pm me

[Rhubarbginisnotasin]

My way of coping is to try and enjoy my life as much as possible in a day to day basis

I think thats really important for yourself but also for those around you. My daughter was talking to someone recently, a very unhappy person, who was asking her how do you and your siblings cope with living a life whilst your brother now has such a restricted one. She was telling my daughter her son is really unsettled as the adult sibling to someone with additional needs. My daughter told her - we can all be happy because we can see our mum is happy despite some pretty awful things, including the breakdown of her marriage after 36 years, happening to her.

I was really surprised to hear what she said as I'd never really given it much thought. It never crossed my mind that my children felt it was ok to be happy and enjoy life because I did.

[Loopyloppy]

Rhubarb - that makes me feel a lot better. I just wish she wasn't so isolated. She doesn't have any friends, just her brother and other two sons at home.

It is the worry of things to come. It keeps me awake thinking about what will happen to him when my Mum is gone (I live abroad and it wouldn't be an option for him to live here, cheap healthcare and social support are non existent) so I can only imagine how my Mum feels.

Op, get online. Find specific forums and charities and make friends. Friends and support, even if they're online and not always face to face will be your crutch.

And maybe see about getting some regular therapy/counciling. I think it would benefit my Mum hugely to be able to talk about her fears and feelings to someone not in the family.

[Notanightbird]

I'm in the same boat and my child is only little still. I find one of the hardest things about his condition the worry about the future rather than the actual day to day of it. My son's condition means he almost certainly won't ever be potty trained, be able to feed himself, talk or walk. My way of coping is to try and enjoy my life as much as possible in a day to day basis, stay fit, try and see positives and try not to think too much about the future yet. But there are definitely days when it really gets to you. No advice, just wanted to say I completely understand where you're coming from.

[Rhubarbginisnotasin]

*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.

[Cakescakescakes]

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?

[figandvanillacandle]

It would worry me too, OP

[Puzzledandpissedoff]

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

[DrSpin]

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.

[Loopyloppy]

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.

[Rhubarbginisnotasin]

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.

[Loopyloppy]

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.

[Loopyloppy]

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.

[Rhubarbginisnotasin]

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.