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.

you sound absolutely exhausted. Something has to give. Your young adults clearly need support. If you are not able to give this, look into what support they can get and challenge pip! Best of luck

All the responses are very gratefully received. But it's good to hear from another mum of someone with ASD @MatildaTheCat

I agree, I think I'm supporting my DD too much. I give my DS a lot less £ to help him get together the money he needs for his property business. He's 20yo and is getting his construction skills learnt- carpentry, bricklaying, plastering etc. He's been doing it since he finished school so he's def getting the right experience.

Thank you all.

We have had a brief chat.

The priority is my daughters rooms today.

My DS has said he will sort his room - it's clean (he hoards the vacuum and carpet cleaner!) but he lacks storage - he doesn't want built in wardrobes, so I've cleared a spiral hanger from my room for him. You can get c3 double wardrobes of clothes on it. I've moved my clothes into my other room (my office) already.

We are all the going to get into the lounge and clear it.

DS and I are popping out shortly to get racking for the garage. DD has agreed her excess stuff goes into boxes in the garage.

I've agreed what money tgey will each get and how that may increase/decrease based on how they manage their rooms/help out.

I will call SS tomorrow and see what help I can get for my DD. The psychiatrist she saw was where she used to live, so she's having to start again here. I'm giving it 12m but I may buy a static caravan just for me to go to.

Ref my mum, I do her shopping with her an evening a week and take her out for the day. I can't suggest help for her cos we moved her 125 miles nearer to my sister who she argues with constantly so there's only me to help her. She's almost an hour from me. She has though now asked to moved nearer to me but that wouldn't happen for at least 6m. I feel bad for my mum, she's 84 and is limited due to her mobility but she won't get a scooter so has lost her independence. Where she used to live she gad taxis on call, but she lives in the middle of nowhere now, in a town but there's a small population so no taxis and infrequent busses tgat are a 15mins walk for her and she can't make the walk.
Have a lovely Sunday.

Feeling optimistic, but sad that England didn't win today, though proud of the lionesses!

Your DS sounds like he's quite close to independent in terms of life skills and maybe just needs you to work with him to find a solution to getting himself up in the morning, sorting his lunch etc.
I'm wondering if you can buy in any support for DD (a carer or support worker or professional declutterer) rather than giving her money? Would she be open to this?

You can't go on like this.
It's ridiculous that your kids won't set alarms and bite your head off when you wake them up. Doesn't ds have time sensitive things he has to do at work ? How does he cope with expectations like a meeting at 2pm? His monologue about sink or swim is the ASD but he clearly can't see that you are sinking.

As for your house mess, it's time to be ruthless so that you can get the boiler fixed and you can live somewhere safe. Is it trash or stuff that you could be sold or given away for someone else to use? My dd had a wardrobe clear out and her clothes went to a local homeless charity who I found on Facebook. If it's big stuff then can it be sold? She clearly won't/can't help- will paying her the next installment of pocket money dependent on sorting it help? If it doesn't fit in the room, then it needs to go. Her stuff can't dominate the house and literally put lives in danger if there's a fire.

Wow, you have done a terrific amount already! Congratulations. I hope you manage to keep them on track with their promises. Try to encourage your daughter to cut back on her possessions rather than giving her another space to fill, make sure she sees the garage is a temporary measure to relieve the clutter rather than a permanent solution.

My DS has said he will sort his room - it's clean (he hoards the vacuum and carpet cleaner!) but he lacks storage - he doesn't want built in wardrobes, so I've cleared a spiral hanger from my room for him. You can get c3 double wardrobes of clothes on it. I've moved my clothes into my other room (my office) already.

Surely it would be easier to swap rooms and you buy a wardrobe for your 'new' room?

Where she used to live she gad taxis on call, but she lives in the middle of nowhere now, in a town but there's a small population so no taxis and infrequent busses tgat are a 15mins walk for her and she can't make the walk.
She needs to move very soon. Preferably nearer to you, otherwise she needs to be nearer to a small town with shops and taxis.

Otherwise it looks as though you are starting on the right path today. I bet you now have a spring in your step

They must both be reasonably high-functioning if DD has previously lived away from home and DS is working. They need to move out. Otherwise you could very well still be in this situation in 30 years' time (I speak from experience).

What is DDs 'stuff'? - is she collecting? hoarding or just buying crap with any money she gets? Is it all neccessary, and could it be rationalised?

Could you pay for a cleaner / organiser / life coach type person to work with your daughter ?

I will call SS tomorrow and see what help I can get for my DD. The psychiatrist she saw was where she used to live, so she's having to start again here.

Follow it up in writing, and ask specifically for a care assessment under the Care Act 2014, and carers' assessments for yourself and DS. It really is important to have a paper trail with these things.

It all sounds exhausting but it does sound like both your children are just expecting for you to care for them forever. If they can hold a job down or have lived away they are capable of at least mostly looking after themselves.
My dd has ASD and has over the last few years had severe depression (thankfully, she is doing much better now - not perfect but there is light at the end of the tunnel in terms of the depression).
With support from her therapist there was a point when we really held our ground with her, insisting she gets up every day (and go to college) wash, keep her room clean etc. to help motivate I linked her money to attending college/ chores round the house. She likes buying things so quite motivating.
On reflection, she has discussed that it was useful that we made her get up every day (not every day was successful).
You need together to put down some groundrules with your children.

On the alarms issue, I'm a very heavy sleeper and I have 3 alarms to wake me in the morning. They are just relying on you as then they can blame you when they don't get out of bed.

They sound very immature. Your daughter's phone shouldn't be running out of battery overnight, she can just plug it in whilst she's using it!
I do think you need to be cruel to be kind at this point, tell them this is 100 % a sink or swim situation (as life is for all adults- parents are not normally parenting adult children!)
I would sit them down and bluntly ask them how they would cope if the worst happened and you died tomorrow. They need to realise that looking after themselves is not only entirely possible but expected.
I would definitely get the caravan, start leaving them for increasingly longer periods of time until they get the message that you mean business.

On the alarms issue my dd got a vibrating alarm to take to her to uni. She was worried about going to sleep with earplugs then not hearing the alarm the next morning. It's a sort of bracelet shape and I'd imagine that it was designed for deaf people in mind. It needs a battery and obviously keeping track of it in a messy room will be very hard but just a thought.

I think her anxiety is too bad at the moment. She's being assessed for ADHD which might answer the CFS diagnosis and is treatable. I'm hoping this can help her - I think she has ADHD.

We made a big dent in what needs to be done today. Her rooms are pretty much sorted and tgd hallway is clear - her bathroom is another matter cos it's now full of stuff removed from her bedroom 🙄 we also cracked on sorting the lounge so she has several bin bags and suitcases to get through tomorrow before I do a tip run of the stuff she no longer needs.

My son has cracked on tidying his room in readiness for his clothes to be hung up.

There's still a lot to do, but it feels like we're at least all going in the same direction.

I will still call SS tomorrow to see what help she can get.

Thanks for taking the time to reply to me. I really do appreciate it.

What a great idea, thanks I'll look into it!

Hi OP, I am livid . Your adult kids are taking the piss. They need to learn how to adult or move out. They should be helping you with your Mother who needs support. They sound crap. Stop wiping they arses and tell them to sort themselves out or move out. That's a good analogy for DS
See what he does with that!

Strangely enough, if you met them you'd find them mature and intelligent, but you're right, I think they are very young for their ages. Having said that they lost their dad as kids, he was the sahp and I worked, so he was a huge loss to them and still is. My DD talks about him a lot and has said she talks to him when she's having meltdowns and mental health issues. As neither of them managed to get access to grief counselling because there was none available, I'm sure that has a big bearing on them leaning on me too much.

I have provided for them if anything happens to me, but unless they are more resilient, they will still struggle.

I need a friend like you, thank you!

I don't think I wipe their arses though. I think they need help, but I can only do so much. I then feel like I have to let them sink or swim and if they sink I feel bad.

They are ND, which creates its own suit of challenges in finding your place in our world, so they maybe need a little more time compared to non-ND people their age. I'd just like thus be sooner rather than later because I know I'll burn out.

My DD did used to work but she got injured and had to stop working. For all that time she managed to get herself up.
She does help me with my work but obvs her waking hours now don't sync with mine.

Well done for the progress on the kids.

Would it help writing expectations out. Possibly identifying core essential survival tasks and additional "good day" tasks.

Why is your mum so reluctant to help herself with a scooter? That would ease a lot of pressure if she could get herself out more.

It is a frustrating combination when children with ASD can be very intelligent but struggle with practical survival/ self sufficiency skills, and hard to decipher what's genuinely struggling (which may vary day to day) and what's attitude.

Fitbits and other similar types of watches / fitness watches have vibrating alarms

What help is your DD receiving for her mental health problems? You say she has a psychiatrist and they usually work as part of a team of health care professionals.
If there is an OT as part of the team they might be able to work with your DD to jointly set goals working towards her being more independent.
Got everything crossed for you OP but I honestly don't think you should be moving out, it's a normal progression for kids to move on, not force their parents out.

You are doing too much for them. Daughter needs her anxiety medication looked at and to claim universal credit.

This won't solve your issues, but from a mother of autistic young adults living at home I hear you.

I use Alexa/Echo in each room. I can set alarms, reminders, even talk to them through the Alexa when I'm out.

It's certainly not the complete answer but it does make life a little easier.

They are adults but with disabilities. This doesn't mean you should be responsible for their every need.

Can you request a carers assessment for yourself? And a needs assessment for each of the children? I think this might help give some direction.

I would also move any things out of your spaces and back into the adult child's space. If you need to maintain this, get locks fitted to your rooms. You need clear space.

I always try to encourage without confrontation. Easier said than done. I fail very often. It's such a hard balance with Autistic young people.

Does your daughter have auristic fatigue/ burnout? Often misdiagnosed as chronic fatigue syndrome.