DS tells me I have used sink or swim and I'm wrong

[ASDMumof2]

Background is both kids have ASD. They're 22 and 20 and at home. I'm on my own - DH died when kids were young.
I work more than full time running a business. I look after my 84yo mum one day a week and one evening - she is unable to fet out I dont visit dye to mobility issues and I'm pretty beaten up now.

The kids ASD means my house is a wreck. My DS and I had got it into some semblence of order before my DD moved back 9m ago. Now we have no lounge - it's full of my DDs stuff and has hence become a dumping ground.

My DS room is on the top floor - I rarely go up there, but it's a mess.

My DD has 2 rooms. Her bedroom is a mess. Her second room is full and her stuff is in the hallway.

My 2 rooms are now getting filled with stuff noone else can fit in their rooms.

The boiler pump went last year - we had no central heating last winter cos I couldn't get anyone cos of the state of the house. I've booked an appointment next Friday and left strict instructions to me DD to clear her floors so we can get into her rooms and sort them out.

I got back from my mums last night and my DD had done nothing. My DS talked to me - he's very intelligent. He mentioned I didn't get him up for work (in his words I did the dirty on him) and I said, I called you when I woke up. I'd set my alarm for 8am one day to get an extra hour sleep. I reminded him that I had until then got up every day early to Di his lunch and make him a coffee, but as he hadn't eaten his lunch from the day before, I decided I'd have an extra hours sleep am I wrong? He said OK I get that, but I couldn't go to work that day.

He then said his sister had said she feels unsupported. Her rooms need sorting but I'm either working or at grandma's.

I said well you're both adults, I can't do everything for you forever. You have to sort yourselves out. We talked. I said it's sink or swim. He told me I had chosen an unsafe learning method and how it's completely wrong to set someone up for potential failure (in fact, in the analogy, it's setting someone up for the risk of death). It really upset me because he's right. I just don't know what else I can actually do.

I bought my DD a physical alarm clock cos she uses her phone to help her sleep which means it's often dead in the morning so her alarm doesn't work, but she's not using it so often sleeps until 4pm or later - she has chronic fatigue. So if I don't get her up it's on me even if I have a full day or work or I'm at a clients site, there's an expectation I should get her up. The issue she's raising is that if she's not up she can't do anything. But it's crap. She was up when I left to go to my mums yesterday but still did nothing.

My DD is completely fd up. She has anxiety like you wouldn't believe the psychiatrist put her on meds but now they're not working. I've tried taking her for hypnotherapy. She expects me to note all her medical appointments and I can't always do that. She isn't putting them in her diary.

I hate my DH for leaving me with this life.

Noone at work would suspect anything. I get stuff done, I'm highly successful and I earn a decent income. In fact I give money to my DD as shes incapable of work - she was turned down for PIP but she needs it - and i give my DS money to supplement his income. He saves like noones business so I'm OK with that. My DD spends every penny she gets.

Am I wrong to use sink or swim? If I am and I think I am, what more can I do? I am not depressed, I am though getting to the end of my tether.

@ASDMumof2
The issue here is not the analogy you used, it's the completely unsustainable situation you are in right now.
I don't have any practical advice, wise MNetters will be a long shortly, but I just wanted to offer an unMNetty hug and tell you to forget about sink or swim and start thinking about how you get out of this mess.

Wow. You have so much on your plate and your DS is quibbling about semantics. You are totally reasonable but possibly unrealistic because it sounds as if both are equally incapable of managing themselves.

Does your DD have any other professional support if she has a psychiatrist? You seem to be ok with her sleeping all day but it sounds as if she’s also in terrible habits and has no reason to change.

Could you have a house meeting and set some deadlines for changes. Small increments might be more achievable. Certainly stop being responsible for getting DS up for work- he’s not at primary school. DD has been allowed to trash your home, why is that? She’s not using or enjoying any of this stuff.

Im sure you won’t do this but I’d be seriously considering moving to a small property on my own in the next few years if they refuse to change.

Best wishes to you.

That all sounds so hard, OP.

I have a ND DH and DD.

I'd encourage you to get a plan together asap. Sit them both down and tell them what's going to happen- for me, the priority would be safety and hygiene so clearing the rooms to make them safe and useable. Can you employ a team of cleaners or professional organisers to assist you for a weekend?

DD's stuff could be labelled and moved to storage. DS's stuff cleared out and left with what he'd consider essential.

With regards to what they both need as support mechanisms, that's very tricky as you are one person but can you get them using as much tech as possible to help with things like routine (alarms, Alexas, apps) and have some sort of weekly meeting to see what's working, what needs tweaking?

You absolutely need time and space yourself. This is vital to avoid burnout. It needs to be discussed and understood that there are times when you are resting and decompressing and that you need it like you need food and water.

You sound like you have been working so hard for so long, hats off OP.

It might be “sink or swim”, but to extend the analogy, it’s sink or swim after you’ve given them the wetsuit and life jacket. And with you stood on the shore in case they still don’t make it (as I assume you wouldn’t see them homeless or starving, so would jump in when safety became important).

You’ve given them the tools to swim and if they choose not to use them then that’s on them.

If you explain it like that, maybe your son can understand his role in this better.

You have an awful lot on your plate OP, and I think your DS is being unkind and unfair to you.

Why does your DS need you to wake him up every morning? He's 22 and holding down a job, he can set his alarm for work. Why do you give him money if he's saving? Why are you giving your DD money if she's just spending it all and you have all this stuff everywhere?

I don't think you are wrong to use sink or swim. There is only one of you and you can only do so much. You can't go on being expected to do everything for 3 adults plus your mother plus hold down a full time job, that's just not feasible. You can't magic up time. They have to learn to do basic tasks. You've helped them as much as you can, you haven't set them up for failure

Good grief OP, you are not far off a massive burnout!

You need to make a list of what each child needs in place so they can be self sufficient long term. What would happen if you had a car accident tomorrow and needed hospital treatment for a month?

The first thing is to get your DD treated properly (somehow). Tell her she needs to go through her stuff and let go of some things. Also ask citizens advice for help with the pip form.

Ignore any mess in their bedrooms, just shut the door so you can't see in and pretend they look immaculate.

Tell your son he needs to start thinking what he needs putting in place things that don't involve you. You say he's intelligent, so get him doing the thinking and the researching. You can support him but you won't do it for him.

Good luck, and start thinking of yourself for a change

Honestly, I’d move them both out, keep giving them money to help them with their new lives but cut the cord a bit. Then I think your life would be better just having your own space. You can still call them and go to help them etc but have a sanctuary.

Why can’t DS get himself up to work, surely there are methods he can use that don’t rely on you (hence you getting the blame). I think you are right that they need to do more for themselves.

you poor thing it all sounds unsustainable!

Firstly stop giving them money.
Use the money to make your life easier cleaner/respite for your mum etc
Then have a meeting, set goals. If they are not met by x deadline, they move out, and mean it. They are 20 and 22 fgs.

That's so ASD isn't it, to argue the choice of analogy but miss the entire point of the situation.
I have an adult DC with ASD. In the kindest way, you are doing your two no favors by running yourself into the ground trying to do everything for them.
They need to be more independent and without meaningful activity no wonder your DD can't sleep or gain the skills she needs to move on in life.
I'm so sorry you are in this position. Would they look at supported living options? The current situation isn't working for anyone.

I can't believe your ds is using "you're always working" as a stick to beat you with! Does he not have any concept that with a business and an elderly parent to care for, you might be a bit tired?

I agree that a family meeting is in order. They need to at the very least be getting themselves up - they're not children. (On a practical level, if you get a super long phone charger for your dd she could keep her phone plugged in all night - that's what I do if I want to fall asleep listening to something.

This sounds incredibly hard.

it’s hard to give advice given the neurodiversity issues.

Your son has a job and responsibilities. Has he worked with occupational health to develop coping mechanisms to ensure he gets to work on time? It can’t always be your responsibility.

would written instructions help - he is what I am willing. To support you with and he is what you must take responsibility for?

so your children take responsibility for getting themselves up in the morning and keeping their rooms tidy. You will remind them to do this once a week and no more. That type of thing?

If they are capable of looking after themselves but don't because you do it you need some new boundaries and new routines. If they aren't capable of looking after themselves ie if something happened to you then you need to look into supported living for them it will be easier for them to adjust in their early 20s than at middle age +

Set out new schedules, make them visual too. Guide them through it for the first month, setting the alarm, getting clothes ready the night before, packing their lunch, doing their own coffee. If they are capable then you aren't doing them any favours doing everything for them in adulthood. DD is expected to be washed and dress by 09:30 whether that means she puts on lounge clothes and rests afterwards is a different matter.

In terms of the mess are they hoarders or do they just have too much stuff? If it's too much stuff then doing one person at a time get everything in the living space, get some new storage like a kallax unit with boxes and that's it, whilst they are living with you they each get a kallax unit and they have to manage the amount of stuff they bring into the home. Car boot or charity shop the rest.

Its your home, they are adults and if they want to live with you they need to follow your rules ASD or not. It'll be hard to do to start with but you may find everyone's MH improves with less clutter and stuff.

I agree with pp, I would look into supported living for your own sanity.

I'm aware that I'm no expert on autism so I'm not going to give detailed advice, but can I suggest that you start a thread on the SN board for this? Have you got advice on parenting ND adults from the NAS maybe?

I agree with keeping your own money and paying for professional decluttering/ cleaning at home so you can get basic things done like sorting out the heating and feel less stressed.

If your mum needs care, can she pay for it? What are you actually doing for her? On the Elderly Parents board we think about the things that only you can do (being her daughter) and things you can and should outsource ('small jobs' that end up taking all day because she's a long way away and wants them done the way she would do them but now can't).

Feeling for you very much.

As somebody with an adult child with ASD and another with EUBPD, you need to step away. They are adults are they are being very dramatic. They absolutely DO need to put things into place to live their own lives and learn to take responsibility. They can't get up for work? Sorry no. My mum used that excuse my entire childhood and my Nan would set her alarm at 7 every morning and as pend 30 minutes calling or landline until mum woke up. Guess what? Nan died and my lazy arse mother had to take responsibility or face homelessness from not paying the mortgage. She did it just fine, even with mental the health issues that "prevented" her from doing it while her mum was alive.

Keep your money and buy in services. Tell your children then need to buckup and learn to act like adults or move out.

Stop giving your daughter money. But pay to put her stuff in storage instead.

Stop giving your son money. But buy in professional declutterers and get him a very loud/vibrating alarm clock. He managed to hold down a job, so allowing him to weaponise his selective incompetence against you in your own home.

I think you need to start with your DD, and before she says “unfair” explain that DS is next on the list.

First ALL her stuff gets moved from the sitting room and anywhere else in
the house where it has landed. She has two rooms. You are happy to help her sort out and declutter her rooms, but she is not going to clutter up the rest of the house. Buy a stack of black sacks and go through her stuff with her using bin, keep, recycle. Make sure the bin and recycle bags are removed from the house immediately. Does she have storage in her rooms that helps her to organise? IKEA storage units are usually fairly cheap and flexible, especially if you sign up to their friends and family and get discount offers. Why does she have two rooms, help her define each rooms purpose “ this is where I sleep and where I keep things that have a special meaning to me like my books and jewellery, I need this room to be calm and soothing, my other room is where I keep my clothes and where I work/write/game this room can be lively and full of energy.”

Set up an online diary for your DD that sends alerts to both her devices and yours. Reapply for PIP, many refusals are overturned on appeal.

Second DS , he needs to stop arguing with you and accept some responsibility for his life. He wouldn’t behave like this at work. Getting him up in the morning is his responsibility, not yours. once your DDs spaces are under some control then help him to sort out his.

I feel so sorry for you, most of us expect our work load to lessen as our children get older, but you will have to be the one keeping on top of stuff for much longer. Make sure that you don’t forget yourself in this chaotic house, you need to have a space that is your sanctuary, away from children, clutter and work. Actually, maybe that should be your first priority!

This is unsustainable. You are risking burnout.

Suggestions from other posters are excellent.

Use your money to buy in support.
Get DD to contact CAB to help with PIP appeal.
Use tech to aid them in setting alarms, getting themselves sorted in the mornings.

Can you reduce your working hours, employ an assistant?

Do you ever socialise outside of the family?

Im an autistic mum of two ND kids. We live in a tip and I understand well the executive functioning problems we all share. I don’t really let my kids away with doing nothing because it stresses them to think about it. I break it down into smaller manageable tasks and see that they learn this from repetition and it becomes more habit. What they do in their own homes will be their problem but in mine as long as they attempt tidying and getting up (and meaning it) then it’s enough. But my kids are younger than yours and I’d expect by their 20s to have basic skills like getting up with an alarm. If they’re staying in bed all day then perhaps the issue is with mental I’ll health rather than their ND

I would expect as adults that they have coping mechanisms to survive adult life independently (from what you say I assume your kids are capable of independent living)

leave a list of tasks you expect to be done while you are working. If you can get your house into a decent enough condition for a cleaner then make sure everyone pulls their weight to do that.

Hoarding as a terrible habit that can require psychological help to overcome. Your daughter needs to realise that her rooms are the only place for her things. That she tidied away at the end of the day what she has brought out of her room. It needs to become a rule.

Have the children had care assessments? You need to talk seriously to a social worker about setting them up in supported living. They can't be dependent on you forever. What if you had an accident tomorrow?

Ultimately you may have to go in for some tough love and tell social services that they simply cannot live at home any longer. You have every right to do that.

You need to spell this out over a family meeting / meal. Tell them exactly what you are juggling and tell them you need their help as responsable adults.

You tell them from now on they get themselves up. Why can't your DD keep her phone plugged in overnight, she can use an extension lead into far from socket. Getting themselves up is hardly sink or semi. They are not on the street, fending for themselves.

if they deal with the consequences, they will learn.

Next, you need to find a day or 2 you are all free and and sort the house. Declutter, take to the tip or charity.

Day 3 clean and tidy. You should be working as a team. They may have ASD but this doesn't mean that they can behave in an entitled way.

Stop giving them money until they can respect you and your home. Tell them calmly and without blame that you need to use that money to pay a cleaner.

Firstly, stop giving them money.

Your DD needs to get the PIP she’s entitled to.
The only reason she’s not applying for it is because she knows you’ll just hand the money over.

If they want an allowance off of you then they need to clean their rooms.

I understand they have ASD but they’re acting like brats and need to grow up. I think you’re all using their ASD diagnosis as a reason of why their behaviour is so poor.

If getting up in the mornings is an issue then I would try waking them up.
If they go back to sleep after you’ve told them to get up then that’s on them.

I would say to just ring their phones when you get up but if your DDs battery is flat then that sounds like she’s on it all night.

I’d give them one small task to do a day eg get a bin bag and put rubbish in it. Then the next day put dirty clothes in the laundry basket.

It sounds like everyone is a bit overwhelmed and just taking small steps at a time will hopefully help solve these issues, rather than trying to battle too much at one go.

If DS is intelligent enough to hold down a job and have that conversation with you, he's more than capable of setting an alarm clock and producing his own lunch.

You're sinking, not swimming, and I really feel for you

I have thought about moving out and finding a place of tranquility tbh . I thought about buying a static caravan cos it'd be inexpensive and I could take a doggo with me. I might just pick one up soon.

I just got my DD up. She screamed at me. Apparently she went to bed early hours cos she couldnt sleep. Whilst my DS just helped me sort the kitchen.