At the end of my tether

[Didnotsignupforthis81]

I am a single parent to two ASD girls age 21 and 15. I’ve had 21 years of the trials and tribulations of raising SEN children, fighting for EHCPs, a million forms and meetings and reviews, you know how it is.

I honestly don’t know what to do about my eldest. She has massive social anxiety and always has. After EHCP issued in year 10 she went to a specialist school and managed to get a couple of GCSEs. Unfortunately that was around Covid time so after fighting for so long to get her the education she needed, the end result was a lot patchier than it should have been.

She then went to a mainstream college and did a level 2 art course which she passed. Then tried level 3 and found it too overwhelming and dropped out. Since then she’s not really done a lot. I arranged for her to do a bit of volunteering in the local charity shop for 2 hours a week a couple of years ago and she couldn’t cope with it, so that didn’t last long.

So now she mostly just sits in her bedroom. She won’t do anything to help out around the house, I have tried asking multiple times, losing my rag, nothing works. Even simple things like put her plate in the dishwasher or carry a pile of clean laundry upstairs.

If I ask her to do things or talk to her about her future, she gets really distressed and starts wailing and crying like an animal, for hours. So I keep demands very low and I’ve always been of the mindset that she’ll get there in her own time, she’s just developmentally a lot younger than her age. But now I’m starting to doubt that as a strategy, nothing seems to change and if anything her mental health and her ability to cope with life has got worse.

To everyone’s surprise, in 2024 her and a good friend of hers went to Japan. She had an amazing time, although it was very much her friend steering the ship, DD wouldn’t have managed it otherwise. They planned to go again last year. DD got really sick on the plane, vomiting, and then spent the next week shut in a tiny room in Tokyo feeling too sick to eat and not going out. Eventually I arranged for her friend to take her to a clinic and she was given anti nausea meds, she was then able to get out and about and enjoy her last week.

Since then, whenever she travels she feels sick. Whether it’s in a car, train, whatever. To the point where if I drive her somewhere it takes forever because every 5 minutes she’s shrieking for me to stop and then she’s crouched at the side of the road for 15 mins. It’s escalated in to now just the thought of going out makes her nauseous, she says she feels nauseous all the time but this gets a million times worse if she actually has to go somewhere, which isn’t often. She’s ended up cancelling plans to see friends lately because she feels too sick to go. I’ve spoken to the doctors and they agree that it’s likely a psychological issue.

Honestly I don’t know what to do with her. I can’t suggest ways to improve her life because she spirals into a panic and has a meltdown for hours. She’s currently been wailing downstairs for an hour or so because she has a dentist appointment tomorrow, she asked if I could drive her and I said no I’ll be at work, she’s got the train many times before but she screamed “but I’m sick and I can’t fucking do anything” and then the wailing began.

I don’t know how to make things better. I’m burnt out, DD2 is a whole other story and between managing the two of them, running the house, working to keep everyone alive, I’m beyond burnt out.

I feel awful for saying this but I’m at the stage where I often resent her, I also have ASD and life hasn’t been easy, but I’ve put myself out there and done my best. She won’t/can’t even try. Can’t put a plate in a dishwasher. I don’t see how she’s ever going to live independently. I’m so burnt out 😔

Just a live example of how she won’t do anything - she has her friend here tonight. She doesn’t have much of a social life and I don’t think an awful lot of this friend, but she enjoys spending time with him so it’s fine for him to come over. She normally just leaves him to find his own bedding, and he sleeps on the sofa and ends up heaping every blanket he can find on himself. Without putting too fine a point on it, he stinks, he lives in a caravan and doesn’t wash. So then I have mountains of laundry to do when he leaves. I asked her earlier if she could make sure he had a duvet with a duvet cover on, a pillow and bottom sheet, she said ok. Just been downstairs and he’s there on the sofa heaped in blankets, as usual. She wouldn’t give a fuck because it’s not her problem, it’s mine, she couldn’t possible do any laundry without having a mental breakdown over it so that’s another 2 loads of laundry, plus my time and money because she can’t be arsed to do one simple thing.

I know I sound horrible. I am just so fed up of her not being able to do the simplest things to help.

Have you had social care assessments? A carer’s assessment for you and an assessment of needs for both DDs. DD1 may not live independently. That is why these assessments are so important. It will help DD and you to have someone space from each other and for DD to have independence from you, but with the support she needs.

Is DD1’s EHCP still being maintained? If so, what provision is in it and when was the last AR?

Is DD1 receiving any MH support?

Personally, I would ensure the friend has the bedding you want him to use. I would be supporting the friendship so DD1 doesn’t become more isolated.

Are you sure it is won’t do things? And that it isn’t can’t? It sounds likely that it is the latter and DD needs support in order to be able to get to a point where she can better cope with life.

Is DD, or you as her appointee, in receipt of PIP and UC? If so, are they contributing to the household costs?

Can she (or you if she isn’t able to) rearrange the dental appointment to a time you can go with her? She may not be able to go alone. Transport is just one element. Is DD under the special care dental service?

Your daughter needs support and understanding, and you did so well to offer this to her and to fight for it - but it sounds that it reached the extend, not least because of Covid, of depriving her of the opportunity to experience her own capability and strengths. She can't develop skills, independence and resiliance and experience dopamine release if she is deprived of challenges and demands, and as a result, her anxiety spirals out of control. Of course she can put a dish in the dishwasher. I'm a support worker in a residential home for adults who need supported living, all have complex needs, including ASD, but they all can do, and must do, daily chores like set the table, cook, wash up etc and contribute to the harmonious running of the unit by being co-operative, kind, clean, punctual and follow rules. They all have daily challenges, study or work sessions and fun activities to experience achievement and dopamine release. Small chores might genuinely feel overwhelming for her at the moment, but the more often she does things and is held accountable for it, the more she will regain confidence. Anxiety will only lesson if she experiences her own power and the reassurance that comes from experiencing that the overwhelm disappears the moment she tackles and finishes the chore. Doing everything for her or excusing her from everything deprives her of experiencing her own capability and is solid proof to her that she is incapable and broken. For her, there is never a dopamine hit from achieving things, from ticking things off a list, from feeling independent. There is never an opportunity to experience self respect and to receive genuine praise or gratitude from others. But she needs daily opportunity to achieve and be praised. Without, her anxiety and the urge to avoid everything will keep growing unchecked. You have seen how capable she is when she travelled to Japan. Please show her how proud you are and that she did well. I would start small, with a couple of easy, achievable chores and activities each day, e.g. stacking dishwasher, putting on laundry, getting some groceries, if she is arty, maybe helping to redecorate the house, or just ask her to make something nice as a gift. In addition to necesssary chores, there must be some enjoyable, fun challenges, e.g a climbing wall, bike ride, weight lifting, dance class, horse riding, Go Ape etc or going out to a party/concert/cinema/gallery. Physical activity, ideally in nature, as well as music, art and spending time with animals is so essential for happiness and self confidence. Is there a father or relative or friend or even therapist/social worker who can back you up and support you? You can contact social services for an assessment or look for charities who could help. She will protest, very powerfully, and she will be scared and melt down, but you must find a way to not give in. Calmly but firmy don't give her an option not to do it. You can give her a choice, like 'do you want to do the grocery shop or empty the dishwasher today?', but not a choice between helping and not helping. Once she starts doing one thing, it will become easier and easier to build up as she experiences that she's OK and that meltdowns, procrastinating etc don't work. She'll also start to feel safe in a routine. Is there a reward she could work towards, maybe another holiday abroad? Maybe that could also motivate her to try again a small part time job. If she has an EHCP, maybe a supported workplacement could be an option. Volunteering can actually be quite difficult, as many charities don't have the training/support/experienced supervisors that a large employer has and often depend on the voluteer to be very experienced and independent. Places like Amazon or McDonalds or supermarkets are sometimes better and more supportive. It's good that she has friends, so I would encourage this. It sounds like it will be ultimately less work if you get involved in hosting/providing bedding. She should get the bedding ready but you might need to supervise her with these chores initially. Her friends could be your best allies, as they can encourage her to do something that can grow her self esteem and independence. In addition, has she seen a GP or specialist about her nausea and anxiety? Could she be pregnant or ill? Does she have any medication that could help with anxiety and depression to make the essential behaviour changes easier?