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Original poster

Disabled DS is a nightmare. What can we do?

64 replies

GurlWithACurl · 25/08/2025 20:17

DS is in his 30s and still lives with us. We are pensioners and both disabled ourselves in various ways. He has ASD, OCD and learning disabilities, although he can manage quite well day to day. On most days he goes out, either with friends or on his own. But when he stays at home he is very difficult. He can be very kind and helpful, particularly with me, but on many days he becomes angry and really nasty and abusive towards us. Today has been a nightmare with his abuse. He is very rarely physically abusive, but says the most hurtful and horrible things to us.

There is no way that he could live independently of us and so we continue to have him with us. I don’t know why I am posting, really, as nothing can be done. I just wish that the sweet, loving and kind version of him could overcome this cruel version. I feel in despair and so very sad.

OP posts:
Parksinyork · 30/08/2025 07:13

I think it would be selfish to leave it until DS had to deal with the bevereament of his parents and move house at the same time.

myplace · 30/08/2025 07:21

I’m going to be harsh. From the best and most loving intentions you are failing your son. He needs to transition to supported living while life is normal, not when there Is an emergency.

He is at times aggressive and violent, and in allowing it to continue you are failing him. He should not be put in the position of being able to hurt you.

Your intentions are good, you are trying to keep him safe, but the situation IS dangerous for him.

GreyAreas · 30/08/2025 07:42

I think it would be helpful to report the abuse and engage with social care disabled adults team for support. Your son can manage with friends and is taking stress and emotions out on you, he could learn to manage that better. Ask for a carers assessment 🌷

PermanentTemporary · 30/08/2025 07:51

I know it's ‘easy’ from the outside to say this but I agree that the most loving thing you can do for him is to support him to move to a new setting while you are still capable of making that transition as steady and well planned as possible. It’s going to happen one day - make contact with social services and start the process. I do come across frail parents still living with very disabled children in my work and I’m afraid it rarely looks at all positive for either party.

It will be a painful transition for you, but it is one of the painful things we do as parents, and I do think there will ultimately be positive things out of it for both of you.

user1492757084 · 30/08/2025 07:58

Care home or supported living.
Your son needs clarity as to where he will live once you are too old anyway.
Seek assistance and do the hard work while you are young enough to help choose wisely for son.
You need to look after yourselves.

triballeader · 30/08/2025 08:21

My eldest DS has ASD plus MH and is in supported accommodation with MIND.

Before he had his support towards Independence flat I honestly could not imagine him coping with essential life skills let alone learning extras. TBH whilst it was a bit kicky to begin with he decided what he really wanted was to be grown up and learn life skills he had not got. It has been the making of him. yes there are days he gets shaky as heck and that is when the support workers step in, there are days he calls me, a lot but of calls, but on the whole he is getting there and starting to ask about moving into independent accommodation with floating support. This is the lad who SS said needed secure care accommodation at 16 as his MH at the time was very poor and his ASD made him very difficult to engage with.

It really really is better to bite the bullet and start sorting this out NOW rather than leaving it. It gives a better chance of success, you will still have some energy to deal with those moments of falling and you will get chance to be more like parents of a young adult child rather than just carers. If you leave it until you’re too old or ill you have left it far too late. you will not have the energy to enjoy seeing your son let alone have any spare to help him. As you age everything gets a bit tougher and harder to deal with, think of possible health issues plus drop in energy levels that aging brings. These are all reasons I decided to start to sort accommodation out for Ds at 25, it took till he was 31 for him to get a supported flat due to extreme pressure on available places.

DorothyStorm · 30/08/2025 08:23

Applepe · 25/08/2025 20:30

Supported living in his own self contained flat. I understand that you may not have had the involvement of Social Services up until now, but now is the time. They can eventually put a care package together for him and you should be involved every step of the way. You’ll be doing the right thing for him.

This op. This cannot go on.

Geneticsbunny · 30/08/2025 08:24

Apologies for being blunt but he won't be able to live with you forever because at some point you and your husband will die.
It is definitely in his best interests to move into supported living now whilst you can both support the move, get him settled and make sure he has everything he needs.

seratoninmoonbeams · 30/08/2025 08:33

OP if you read these sound words of advice (and warning) from@Notfairisit and @SleepQuest33 please let it prompt you to start making the plans you need to. Be cruel to be kind in the long run 🙏🏼 you will ultimately feel so much better.

mamagogo1 · 30/08/2025 08:35

Supported living is the answer - he needs to be assessed as to what level he requires - this could be living in a shared house with 3-4 others and carers providing general 24/7 support to the household then the individuals will have their own personal care plan, it could be his own small apartment in a sheltered housing complex where a carer meets with him for a set amount of hours over the week but no overnight supervision and it could be a more traditional residential care home with set meal times etc. As you say he can go out alone I’m suspending it would be care hours but his own flat

snemrose · 30/08/2025 08:36

Supported living. Without a doubt.
I have seen so many people (like your ds) thrive in supported living despite the family always protesting they won’t like it. They can still go home for the weekend, for tea etc they aren’t in prison! They also get so many great opportunities and support.
As a pp said - you need to start now. These things take a while.
Can I ask why no ss involvement so far?

mamagogo1 · 30/08/2025 08:37

My dsd lives in a house with others, fully paid for my universal credit for the housing element and the council pays for her care.

typicaltuesdaynight · 30/08/2025 08:45

I work in a nursing home but it has a supportive living unit attached . It has 2 carers in the unit and they are fairly independent. Only need to go into the unit if there is a medical emergency (in a nurse) .
most people are in there because death of family , or like yourself getting older and finding it hard to cope. He would be fine as gives him the level of independence he still has but takes the strain off you. A lot of the clients go home for weekends or Christmas etc

Ratafia · 30/08/2025 08:57

GurlWithACurl · 25/08/2025 20:28

Thank you all so much. Just a couple of things to add. We recently moved house, but his behaviour was similar before we moved and we have only moved within the same town.

Also, I can’t imagine that he would cope living away from us. All I can think is that he would be ringing us for help and coming here crying to be taken back. I can’t bear the thought of him crying to come home. We are usually so close. I know we need to settle him somewhere before we die, but I can’t face that yet.

Seriously, you need to start facing this now. Arguably you should have done it at least 10 years ago. You are doing him no favours if you don't start to help him to live independently in supported accommodation.

Do you have social services involved?

Ammophila · 30/08/2025 09:41

We're on the same path. DS is 16, has ASD, ADHD and severe OCD. He has regular appointments with CAMHS for CBT to help with his OCD but we're not really getting anywhere. He has an EHCP and is in an alternative education setting hopefully to give him some basic skills for independent living, but his OCD makes it hard for regular attendance at anything.

DH & I know we won't cope with him continuing to live with us once he reaches adulthood but we have to wait until he's moved over to adult services before we're allowed to even ask about supported living, if there is even anything where we are.

ComfortFoodCafe · 30/08/2025 09:45

Supported living, he will need it to eventually op you will get to old to look after him best to get him settled now than when you and your husband are struggling. X

ChopsyHatesFungus · 30/08/2025 10:11

You need to get the ball rolling now OP whilst you’re still able to help him adjust to living away from your home.

Otherwise, you run the risk of it all happening fairly quickly following a crisis and he’ll be placed somewhere but it might not be the best place for him. At least if you’re involved you can ensure that he goes somewhere not too far away and that really suits him.

Honestly, you need to stop putting off the inevitable because you’re only going to make it more difficult for him if you do leave it too long.

Original poster
GurlWithACurl · 30/08/2025 12:00

Goodness! I feel a bit bombarded! Thank you all for your comments and taking the time to advise me. Yes, I know that we need to face up to eventually moving him in to supported living. We are going through quite a big upheaval with moving house and once everything has settled down we must discuss his future.

We did contact Social Services a few years ago after a really horrible episode when we had to call the police, but they said they couldn’t help us as he had a lot of savings. Can anyone confirm that this is true?

OP posts:
MissyB1 · 30/08/2025 12:04

PotteringAlonggotkickedoutandhadtoreregister · 25/08/2025 20:34

You need to face it! You say yourself you’re both pensioners. To be brutal, you are going to die sooner rather than later - my dad died when he was 68. And even if you live until you’re 90 you are well over 2/3 of the way through your life.

saying you can’t face it isn’t a plan, and it’s not fair on him or on you.

you need a plan asap.

I agree with this. Start planning now for supported living for his sake not just your own. Leaving it until crisis point won’t be fair on him. As you are now you will be able to help him move and learn to cope on his own, in the future you may not be able to help.

TheBroonOneAndTheWhiteOne · 30/08/2025 12:04

If you and your husband were in an accident and died suddenly, your son would be placed in some kind of emergency accommodation.

It would be a nightmare for him, wouldn't it?

You must get him sorted long before you die @GurlWithACurl because it's the responsible, loving thing to do.

Yes, he might perceive it as a rejection at first, but you'd be doing him a favour.

Geneticsbunny · 30/08/2025 12:04

Social care can still help you to work out what sort of help might work but he will need to use his money to fund it till it runs out and then he can apply for universal credit.

How much can he do completely independently d how much does he need support with?
Can he cook for himself? Or could he manage lunch and breakfast but would need help with working out what to do for dinner?
Can he do his own self care, I. E. Washing and dressing and brushing teeth? Would be need someone to come in and help with that?
Maybe you could set up his extra care for things whilst he is living at home, so that could just move across with him into his own place when the time comes.

Gazelda · 30/08/2025 16:46

A planned move to supported living would be the best solution for him. As others have pointed out, it would be so difficult for him if he had to move as an emergency.

if I were you, I’d contact Mencap. They have a fantastic advice/support team. They will gently help you to find person-centred services that suit him. And they’ll be there for you/him if circumstances change.

triballeader · 30/08/2025 17:06

SS refusing sounds like they only looked at his savings and how that would affect the social care aspect of care provision. Support towards independence flats are not the same. Think more like semi sheltered housing for over 55s. Help is around if you need it but you have your own front door and live your own life. If you fold at the first barrier your left to get on with it. You really do have to yell long loud and continuously and back it with as much evidence to support your request for help from police crime numbers, hospital visits related to disability, ECHPs etc etc….keep it factual and insist you also have a carers assessment done for you. (It was the carers assessment that finally got my DS floating support and assistance to get on assorted housing lists before they had to deal with a crisis as my health was badly suffering by then)

Insist on a SS formal care assessment so you have a good idea of your son’s needs going forward. An Occupational health assessment details what kind of accommodation is needed to meet any potential physical needs.

Sadly if he does have savings in his own name that will impact income related benefits which in turn impact any chance he has of housing benefits being paid. Any savings over £5k will cause an issue. To give you an idea basic care is roughly £1k a week. That burns through most savings. If more care is needed it costs even more. I strongly suggest seeking independent finanacial advice and legal advice and second the speak with MENCAP and the National Autsitic Society for further signposting. It is possible to set up a family trust fund but it’s very complex, takes time and needs to be done robustly and legally. It may be possible to use his savings towards a flat for his benefit depending on the amount that is part of a family trust. Again legal advice should be sought as it’s horribly complex to setup if your not a good solicitor.

PermanentTemporary · 30/08/2025 17:15

If SS rejected you first, I wonder what charities could advise and support you with the process? The most relevant in my region would be Autism at Kingwood - maybe they could point you towards a local equivalent?

Ohwhatfuckeryitistoride · 30/08/2025 18:52

My dh worked in supported living facility, they have social lives, freedom,structures but importantly, staff who have dealt with similar situations and are paid to cope with the verbal abuse(it was like water off ducks back to dh, he knew it was just their way of venting frustration). They had group homes as well as independent supported living facilities. And families could visit, take them out, they can go home, go on holidays. Respite stays were always available to see what the best fit was. And there may be one close(but not too close) to you.
There's been some excellent advice op, time to make that next step. Good luck.