How do you cope knowing your DC will always be vulnerable?

[MrsBobDylan]

Hoping not to depress anyone, but I find myself thinking and worrying about what happens when ds becomes an adult. He is 10 now and will not be able to live independently or work.

I feel such a sense of dread at the thought of either a) trusting other people to take care of him or b) becoming those parents who go into old age with him still living at home and not knowing what will happen when we die.

There are so many fucking horrible people in the world, how will I keep him safe?!

He has two brothers but the older one has his own shit to deal with and I am determined their lives will not consumed by having to care for their brother.

Do you have an adult child in this situation, how does it work? Other suggestions welcome as to how you deal with 'the fear'!

You get through it one day at a time, and promise yourself that you will be immortal...
My DS2 is now 23. Autistic with moderate learning disabilities and OCD. In many ways we have been INCREDIBLY lucky, he went to special school, then special needs college and then a MENCAP traineeship and on the back of that was given a little job in Asda. 4 years on he's still there, and is a perfect employee... he does exactly as he is told, turns up at the exact minute etc.
BUT he will never live independently, his 'life skills' are entirely absent (he can't make himself food, I'm still shaving him etc etc)

I disengaged with social services when he was about 18... he had had direct payment support til then, but the 'fairer charging' meant he would be paying out as much of his DLA as he would be receiving and I was sick of paperwork and cockups. At some point I will have to reenter the fight for support and I would advise staying in the system.. or fighting to be IN it now if you can.

DS2 is the youngest of four.. but his older brother has gone to Australia, eldest sister is a doctor down south, and so his other sister who still lives with us, but is moving locally, will be his advocate when we are too old (or dead) She happens to be a learning disability nurse which is handy as she is passionate about his support and advocacy, and will have power of attorny for him when we get it sorted. BUT I feel so guilty that she will have to have this role. She loves him, but by necessity she will HAVE to have that final responsibility., and that is not fair on her. (She is happy to do so and is brilliant with him but that's not the point)

Sorry that's a long reply... but in essence, you just DO live with the fear and try to put it to the back of your mind, whilst looking to secure the best future outcome you can. I am planning to have my son in semi supported living by the time he's 30... he has one friend a lovely lad with cerebral palsy and they want to live together. No idea how I'm going to make it happen yet... but somehow we will.

My son is so vulnerable.. if I thought about it daily I'd probably be a total wreck, so I just do one day at a time. I'm 52 now... unless I'm lucky and we can get him in supported living I suspect I'll be still caring for him when I'm 82...

@StillMedusa your 'being immortal' approach made me smile - that is dh's plan too. I am always worrying about dying so I'm not as good at it!

We have been fighting to get direct payments for the last 5 years and failing so other than his special school, arn't really in the system.

Your son has done so brilliantly securing his job and keeping it, you must be very proud of him. He sounds similar to my son in terms of ability/disability so maybe my son could achieve something like that too, here's hoping!

You dd sounds fabulous too but I totally get the horrible conflict you must feel about her life being altered because she may have responsibilities for her brother at some point in the future.

My eldest son is adamant he will look after his brother but I really don't want him too. It feels like such a sad thing for him to think when he's only 12.

Thanks for taking the time to reply, I appreciate hearing about your set up. Disability is so much more than people consider isn't it? We experienced some discrimination because of our son's disability this summer and I don't understand why some people don't want to acknowledge just how hard it is.

I worry about this all the time. My DS is 22 and sounds very similar to your DC. He also had a little part time job arranged through Mencap but lost that due to coronavirus. He really wants another job but there are so many people out there looking for jobs right now.

I am a lone parent to 3 DC. His dad sees the other two but does not even send him birthday cards. At the moment I am all that stands between him and the wankers of the world and it is very scary.

We have no support and his EHCP is not worth the paper it is written on. He will never get DLA and I am just embarking on the PIP journey mainly just to have some presence in the system for him. I really don't know if his siblings will support him when they are adults - it is a bit early to tell at this point.

I am also attempting to channel immortality!

TooManyDogsandChildren Don't forget to apply for ESA for him too... not sure how it works if you are in Universal Credit area but DO check it out. And persist with PIP... if turned down go for a mandatory reconsideration and then (probably tribunal)

I basically write so much on the PIP forms (I staple extra pages!) that I reckon I bore them into submission I also give clear examples of whatDS2 can't do compared to a typical 23 yr old.. eg 'I would expect a 23 year old to be able to navigate a journey independently but DS 2 will never drive, can only go on one bus that we have bus trained him to use and cannot go anywhere new without a carersupporting adult'... make it clear what the deficits are.

PS I agree..EHCPs are generally a pile of useless poo....

Came into SN chat tonight as this was the question weighing heavily on my mind.
DS is 14, 2 older siblings, one younger

I’m hoping for supported living one day, not sure we are living currently in the right local authority to make this happen
How older sister particularly wants to support him but don’t want to put it all on her if I can help it

I swing from burying my head in the sand and living day by day, to laying awake at night worrying what his future will be

I might contact Mencap to find out more about what post-18 provision is like, so I can build a realistic picture and plan (and brace myself) accordingly.

I feel as though today's young disabled people are victims of society's need to minimise the difficulties they have and the support they require. When ds was a pre-schooler there was so much pressure on us to 'be positive' 'be ambitious for his prospects' 'be a special parent to our special child'. It is just another form of telling us to put up and shut up imo.

I don't need advice telling me to love and value my child, I need money that will pay for accommodation and care for him once we are no longer able to offer it. I need to know he will be safe and cared for.

Absolutely.
DS2 went through special school... diagnosis ASD and moderate learning difficulties (and OCD by age 15). BUT when adult services came to assess him.. suddenly he was 'not learning disabled enough' He could tell them who wrote Hamlet (as his sister did it for A level) but can't make a sodding sandwich, look after his personal care (he showers daily as we built it into his routine but nothing else) He is verbal..very on his 'topics of interest' (supermarkets across the world and musicals) but everyday survival skills... nada. He has the world understanding of a young primary age child... but 'too able' for LD services support. He has huge mental health and physical needs (has Ulcerative Colitis and on a ton of meds for that and OCD

The reality is he will never be independent, never marry, never drive, never have any of the normal experiences of an adult... and no one gives a shiny shit .

I hate to say it, but itwould be easier if her were more obviously disabled. As it is he is incredibly vulnerable and slips between the cracks.

@StillMedusa totally agree with your last sentence..

DS is lovely, he is a kind, sweet, vulnerable soul who wants to have a place in society and friends. The reality is that he is almost wholly isolated and the loss of his job has been heartbreaking for him.

I'm thinking now about selling my house and buying a small business with accommodation attached (like a pub for example) to give him a job and a purpose in life. I'm very aware though that he only really has the attention span to work very part time at very simple tasks so most of that will fall to me and I will be sixty shortly.

I'm expecting to be made redundant in October when a more senior member of our team comes back from mat leave, so might be a good idea anyway.

It plays on my mind a lot. My son is 21, severely autistic, severe learning disabilities and non verbal. He lives at college term time and when he first started I worried constantly. I don’t now though. The place is fantastic and although he’s non verbal I can definitely tell if he’s unhappy. Myers always happy to return there so that all I can go in.

he is always happy to return so that’s all I can go on

I worry about ds's inability to manage conflict. Always straight in for an argument and responds aggressivly. Easily influenced by others. We carefully keep him away from situations that would end in disaster but can't do that forever. E.g can't go to a park alone as would definitely end up involved in poor behaviour

I am the foster carer of a 14 year old boy. He has lived with.us for 8 years so feels like my own child. I am so worried about his future. His special secondary school don't seem to want him to get qualifications. He spends the first 30 mins each day in registration. Another 30 mins registration after lunch and yet another 30 mins at end of day. 1 1/2 hours for registration. Then schools says not enough time to do Science exam. Yet time for forest school. He has learning disability, global developmental delay, anxiety, many autistic traits eg. is very rule oriented and very poor eyesight. He has no depth perception. He can walk on a straight footpath away from busy road but not cross road, can't use microwave, or make a cup of tea. Leaves shower running after use and sometimes with plug in. He can't wash his own hair. Sometimes gets his shoes on the wrong feet and does not know or notice. He will always have a home with us as long as we are well to look after him. I worry what happens when we get too old or sick to care for him. I am trying to teach him to sort washing into whites and dark colours. I want him to be able to learn to use the washing machine and microwave. I put a red sticker in his right shoe so he would remember to put it on right foot but he has not grasped this consistently yet. He has got better at cutting up his own food though. He speaks well but struggles with understanding. At the moment I drive him to school as too far to walk (11 miles) but I would love him to learn to go on bus. My adult sons are quite good with him and sometimes take him out at weekend to a zoo or cinema but I can't expect them to care for him when we get too old. I just think I have got to get him to learn microwave and washing machine.

@caringcarer

I am the foster carer of a 14 year old boy. He has lived with.us for 8 years so feels like my own child. I am so worried about his future. His special secondary school don't seem to want him to get qualifications. He spends the first 30 mins each day in registration. Another 30 mins registration after lunch and yet another 30 mins at end of day. 1 1/2 hours for registration. Then schools says not enough time to do Science exam. Yet time for forest school. He has learning disability, global developmental delay, anxiety, many autistic traits eg. is very rule oriented and very poor eyesight. He has no depth perception. He can walk on a straight footpath away from busy road but not cross road, can't use microwave, or make a cup of tea. Leaves shower running after use and sometimes with plug in. He can't wash his own hair. Sometimes gets his shoes on the wrong feet and does not know or notice. He will always have a home with us as long as we are well to look after him. I worry what happens when we get too old or sick to care for him. I am trying to teach him to sort washing into whites and dark colours. I want him to be able to learn to use the washing machine and microwave. I put a red sticker in his right shoe so he would remember to put it on right foot but he has not grasped this consistently yet. He has got better at cutting up his own food though. He speaks well but struggles with understanding. At the moment I drive him to school as too far to walk (11 miles) but I would love him to learn to go on bus. My adult sons are quite good with him and sometimes take him out at weekend to a zoo or cinema but I can't expect them to care for him when we get too old. I just think I have got to get him to learn microwave and washing machine.

i have aspergers syndrome and reading some of the messages on this thread have made me realise how lucky i am and i just wanted to say some places do life school classes his school might these are tailored to neurodiverse people that might teach him stuff in a way you can not this helped me i hope it can help you and the reason special schools often do this is because the focus isn't qualifications its remaining a sense of calm and not doing anything to jepordise already fragile mental health if you are concerned about the lack of qualifications try to sit down with the school and ask them or toehr parents what they are doing for your children