The uncertainty and anxiety of 'the future'.

[boredandrestless]

I'm sure this must be a common one of the worries list?

DS 7, has asd, at the moment he is still in nappies and does not sleep through the night but is doing 'okay' in his school work. I go at his day to day life from a positive, proactive standpoint but in reality I cannot know how he will be as a grown up (eg high functioning or needing support), will he be able to go into further education? Will he have friendships + relationships? Will he find suitable employment? I try not to think about all this on a day to day basis as it's a tad overwhelming.

As well as the worries over him leading a fulfilling life (to whatever level that may be) in adulthood I also worry about the practicalities. Especially with the tories hitting the vulnerable. If he cannot live an independent life will he receive any help from the welfare system? The social services department? Society in general?

I am wondering about setting up a trust fund of some sort for DS for if he falls on hard times, or to pay for things he may need in adulthood. Not that I have pots of money now (I wish!), but maybe this is something I could do that would feel a little proactive. I just feel so helpless at times!

Do other people worry about this stuff and what are your thoughts on it all?

i worry about DD as we (DH and I) have been called her 'social interpreters' by HCPs and are older parents. what if one of us develops a debilitating disease and cannot continue this? we struggle with 2 of us at times, what if one us is no longer able?

having a bad day today

I think we all have these worries,it wouldn't be natural not to. If you could afford a little to put away for him it may help in the future. I guess though that as none of us have a crystal ball we can't possibly know what the future holds and therefore can only really concentrate on dealing with the day to day challenges. I know that when i get worried about the future it really affects my ability to deal with the present so i try not to think too far ahead.

oh (((((((((((((((((((((tooearly))))))))))))))))))) sorry you are having a bad day

My DS has an almost extreme attachment to me, and his dad (my ex) just doesn't 'get' him, or have the same bond, or make any great effort too. It's hard isn't knowing they are soo dependant on you and may very well be for a good long while.

I have very foolishly started a novel this afternoon about a young girl being put into a 'home' institution for disablities and it is as horrifying as it is compelling. I know we are not there any more in quite such poor standards but I feel (perhaps irrationally) that we aren't far off it the way the government and society are tipping regarding welfare, disabilities and such.

Sorry I am probably not helping your bad day much.
Ca you self medicate with chocolate like I am?????

numptys yes that's my usual coping strategy, one day at a time.

There is a thread active ATM regarding a BIL (a grown man with leanring disabilities), where the situation is his mother hasn't ever faced up to his situation, has never involved SS or benefits, he has never had proper support, or even knowledge of his DX, and MIL has now pissed off abroad and left him! Rather extreme edge of the scale but has made me think it would do me no harm to maybe set something up. I could never put enough in to cover lifelong care or anything like that but it may stop me worrying quite so much.

I am a single mum and DS is an only child too so we are a small family unit and as an adult he isn't even going to have siblings around to keep an eye out for him.

thanks for the hugs, needed those

am waiting for a call so chocolate will be a good sub for the long bath i have promised myself

Do we need a group hug?

tooearly I've been worried about the future as long as I've known DS was disabled. Now he's mid-teens, that worry is having to translate into an action plan. We're at the bottom of the mountain, staring up at the top at the moment and sometimes it feels insurmountable, BUT time doesn't stand still and I know we have to plough on and plan his future.

I worried terribly about other things to do with DS, and got through them - the onset of puberty for instance, or the day his lovely family carer had to give up looking after him. We crossed those bridges and it's been ok in the end. We adjust and learn to live with things don't we?

As to the Government and Local Authority cuts, all of them disproportionately hitting disabled people - I find this a really terrifying thing. I feel like I'm just holding my breath, waiting for something really major to be taken away from us. I always remember a story in the papers a few years ago, about an elderly person in America being abandoned by the side of a road - like an unwanted dog - because their relatives could not afford to care for them and couldn't cope. It haunts me as I think the Coalition love the US style sink or swim system.

Oh boy I understand how you guys feel :( and sorry you are so sad today tooearly :(

I really try (hard to do) to avoid the future and thinking about it. Because of how crowded my brain is from day to day with everyday house stuff, kids stuff and business stuff so much so that my cat miaowing can put me out of sync

The only thing I do is instill on all 3 of my children the importance of family and siblings. One does not have without the other, one does not take with out taking for the others etc. We have weekly what we call "family crash meetings" where the kids and I (dh if he is not working) where the kids can talk about anything from fun things to sad things that are worrying them. Because I have to be honest and say without this it is so easy for us as parents to not spot something is wrong with one of them due to everything revolving around DS and work.

DS doesnt understand much why we do this but he does waffle on about his obsession of the week/year! and join in a convo even though he goes off on a tangent. But we always end with "good job we have each other" and group hugs. This I am hoping will instill them to look after each other and work together (aside of the odd scrap or three!)

For the other part I dont think further ahead other than I expect the same from DS as I do for all my kids and so its my lifes mission to teach him all I can. If I think too hard and feel sorry for myself or him it will wreck his future for sure.

It's totally natural to feel like this,My DS will never be independent and the future scares me stiff if I let it (I try to live in the present whilst planning for the future)

I saw a solicitor the other day and am writing my will and setting up a trust for DS.(I haven't got much to put in it yet !)I am also specifying guardians.one of them is young and one older.They are people I trust who will do the best for him.

Cerebra have a wills grant scheme;it's worth getting in touch.They give £350,though it may cost more.

I like your 'family crash meetings' coffee. Good idea! It wouldn't work here but we are always very open to the DC's saying what they like - good and bad - about their lives with DS1 and encouraging them to truly understand that he needs to be treated with dignity and really can't help being violent!!

I think worry is completely normal but it is how you deal with those worries that makes the difference. Sometimes you just need to vent without anyone making 'helpful' suggestions. Some things you can't deal with until they slap you in the face. Some things you can plan to avert disaster.

I do like to have a problem-solving approach and try to really pin down what I can do - if anything - to make things easier. That includes kicking the arses of people who should be doing stuff and aren't and not wasting time on pointless appointments and paperwork. I can't afford to have my head in the sand

My positivity and energy always has a roller-coaster motion though. Some days I can tackle stuff head on, others I feel I'm being attacked!

{{{{hugs everyone}}}}

Hi Boredandrestless

When DS was 15 I was told by a clinical psychologist that he "would be unlikely ever lead an independant live".

I can still remeber every detail of that meeting and those words in particular.

Fast forward almost a decade and he has a good degree in a difficult subject, his own car and is studying for a Masters degree.

He sill has huge difficulties but I can envisage him living independasntly one day.

Get as much support for him as you can even if it means a daily battle to obtain it. the more support you can get the better the outcome will be.

Be careful about planning trust funds etc. It's a complicated area and could render him ineligible for benefits if the trust is not managed properly.

I'm still trying to think through the Will thing.

I wouldn't waste your time thinking about the welfare state in the future there probably will have be several changes of government .
Every government changes the rules,this lot seem to be ---p
Provisions have got alot better over the last 15 years,and hopefully will continue do do so.
Make the most of life now,because you don't know whats round the corner.
Think positive and be happy.
Don't forget that the money you receive now is to make your sons life better,and yours now. Use it if you can to take him on a holiday,that is if you don't need it to survive on .
If you save for your son this could go against him if he needs care as an adult,even £2,000 can mean he will have to pay more for his care.
If you set up a trust fund make sure your solicitor knows about disability,not all
do, as I learn't at great expense.

Yes I was wondering how an amount in trust would affect his access to benefits as an adult. As I would be using his current benefits to pay into the trust it seems a bit pointless, he would be going without that money now, to go without it again because he had some in trust.

I do try to think positive and despite the stresses and tiredness we do have a relatively happy life. I was feeling very down and very anxious the other day. Feeling like the anxiety storm has passed again for now and the sun has come back out.

I really appreciate the replies I've had, I know when I come on here there will be people that really do get it. Thank you all for replying.

I have a brother in his twenties with asd and global delay and who will never lead an independant life. I wont lie, it has not been easy (and never will be), its a long hard road that seems unsurmountable, but there are moments of clarity. He had a couple of years at a camphill community college in his late teens and then we hit a bit of a problem. We were then offered day centres (which were rubbish) or residential care, in totally innappropriate settings.

We turned them down and looked around and found something that he liked and which my mum thought would be more fufilling for him. He's currently living there but comes home for weekends. At the minute it's working. He loves the bit of 'independance' he gets from the family, but whilst still maintaining close family links. He is living with people of a similar age and gets to do activities and things that he likes to do.

Don't get me wrong it's not all plain sailing and there have been issues, but we think we've found the best we can at the minute. It wasn't easy to get though, but my brother was able to get legal aid in his own right and we fought the council over what they were offering and with the help of an excellent solicitor, managed to get him a place.

We hope this will be suitable longer term but if not or if he wants/needs to come home then he will come back to live with my mum. When that becomes problematic, he will live with me and should I ever not be here then I hope my other brother or step sister would be here for him.

I think I've had to learn to come to accept that no-one will ever 'manage' him in the way that my mum and I do. I also had a really hard time with him going away from home as I always was adament from being very young, that he would always have a home with me if mum couldn't manage him and that I would never let anyone 'send him away'.

I've now realised that he has every right to have some independance from us in exactly the same way that my other brother and I have, and that him being away from us is not 'sending him away', it's enriching his life, which is all we ever wanted for him. He will never be able to look after himself and will always need caring for, but he is largely very happy, he has friends and he does have aquality of life that extends beyond my mum and I. I know it's not much, but he's happy and I guess thats the main thing.

feynman thanks for your very interesting post. You have confirmed two things: that getting the right help is fraught and never ending, but that 'putting your child in care' is sometimes a positive choice. It is a relief to hear.

Hi Bakelite belle, glad if it helps in some way. Certainly the battle has never ended over 'fighting his corner' as it were. But him being in a residential setting has definitly been very positive for him. He's among peers, and they do things each day. It might be something simple like going for a walk, or to the shops, but they have regular, outings to the swimming pool or gym, or day trips out. The have discos and get togethers which he loves, an he is able to feel some degree of independance from the family. Thats not to say there haven't been issues and I know my mum in in very regular contact with them, but it is possible to have a 'mostly' positive outcome. You just have to be prepared to fight for it.