to stop DD having holidays?

@MustWeDoThis

im sorry but you’re wrong. It’s not all about the daughter. OP matters just as much. She is also deserving of having fun and enriching experiences. What a life for her otherwise! Being a Martyr will not benefit OP and it will not benefit her daughters - you can’t pour from an empty cup afterall

Sounds like he needs to go on some sort of communication course or anxiety course and learn how to communicate with his daughter and how his words affect her! He needs to change not the holidays or the attendees!

They get on so well and love each others company but there's this parallel problem of him not giving her the emotional support and reassurance that she needs

She’s not a child. Turn that round. Perhaps she’s not giving him the respect/consideration/peace/whatever he needs. You can’t seem to accept the many people here that are saying that it doesn’t sound like your DH is doing anything wrong, and that it’s your DD who needs support to change not him.

You’ve clearly worked so hard to look after your DC. Take a step back and try to see it objectively. It isn’t helping DD2 to lead her to expect the world revolves around her.

I appreciate your dd has complex emotional and physical needs, but it does seem at times she’s like a toddler who has a tantrum if things aren’t too her liking.

For the record, I think both you and dh sound wonderful the care you give your dc, but please remember to look after yourselves as well.

This. I don't think any of the things you've given as examples of what your DH has said are bad at all. I'm starting to feel really sorry for your DH.

Hi OP. Does your DH do personal care for your daughter? If so, she may be at the age when she chooses to have a woman doing personal care for her?
Have you considered recruiting a woman pa to build up confidence so you would consider her going on holiday with her only?

Edinburgh is a wonderful city, especially during the festival. If they do what they like
there would be lots for you to do independently then you wouldn’t have to follow them round.

She is being ridiculous. If she can't control her anxiety then she stays home.

I think your daughter is showing signs of ASD. Lots of your replies suggest this. I’d definitely get that explored asap!
a family member of mine was recently diagnosed and can honestly say it sounds exactly like them in the situations you’ve given.

the going on holiday, she either puts up or they stop would be my answer however that doesn’t help if she does have/get a diagnosis. I don’t think you should be going. It’s for your husband and her to get on an even ground so to speak and deal with it together.

She's your child and cannot go alone. It is not her fault she is SEN. As parents it is not about us. We sacrifice for our children, especially when we are suffering. It's not about you having a good time in that moment, it's about your child - No matter what age - Having good quality of life and experiences that normal abled humans have. It's not going to have a catastrophic effect on the rest of your life.

It would be fair for you to also spend some time away with just your husband, or friends, or both - Also make sure hubby does the same thing.

How about DD1 and DH go away and see if DD2 can have her own carer at home, then you can go away alone somewhere nearby just in case?

Well, OK, but it’s unlikely that that’s the only thing that sets her off, judging by what the OP has said. It sounds like there are about a million things that provoke anxiety or an argument if voiced. There’s no real way to avoid triggering someone if that is their mindset.

Agree with PPs, cognitive behavioral therapy would be helpful for teaching her some coping techniques that she can be helped with. Being physically disabled is tough and she’s had a rough ride through life. But it sounds like she needs some skills that will enable her to start helping herself a bit more at the emotional level. At some point, her parents won’t be here any more and she’ll probably have to transition towards some kind of assisted/group living, and she will have to adapt her needs and behaviors more towards those around her once that happens. It’s kinder to start preparing her now. It also sounds like the OP and her husband have lost sight of their own needs over the past 20 plus years.

Your DD may well be ND.

She takes everything literally that your DH says and can’t see that he’s joking. This inability to understand humour and to imagine that everything he says it’s real suggest she may have ASD.
she takes everything literally that your DH says and can’t see that he’s joking. This inability to understand humour and to imagine that everything he says it’s real suggest she may have ASD.

secondly, she appears to be very sensitive to criticism, and that may mean she has rejection sensitive dysphoria, which is often linked to ADHD.

Your DH’s inability to change his ways of communicating with your DD also suggests a lack of insight and empathy and understanding of your DD’s needs.

The fact that they enjoy the same things and have a similar personality suggest that he could well have some of her neuro diversity, which she had of course inherited from him.

I don’t know how you help people on the spectrum, understand empathy, and how to get inside the mind of someone else so that they can modify their behaviour and stop triggering your DD. Some are very able to moderate, others not so much.

The only way I have found that works somewhat is to find a way for the person who is creating the trigger, that they should in someway be triggered themselves by a similar set of circumstances/communication.

Perhaps, if your DH were to experience some of the anguish that your DD experiences from some words that send him into freak out mode, he would stop.

At the moment he has not linked his words to the impact they have on her because he hasn’t experienced this experience himself. Well that’s been my experience of trying to work through ND in our family on occasion.

Finally your DD is very anxious and this is also a hallmark of someone with ASD. Finding a change in a plan disruptive, not being able to go with the flow, catastrophising, possibly having intrusive thoughts about what could go wrong etc.

Please do give it some thought.

All parents of children with anxiety would love it if they had their own coping mechanisms/tools, but where can they learn this? There is no support at all. My DD is 22yo has had CFS and anxiety diagnosed since 14yo and the opportumity to access services that can help is worse than woeful.

So yes I agree, but sadly, we don't live in utopia!

@katepilar

would you really? Why?

they sound fairly innocuous and run of the mill to me

This sounds so hard.

@Dramatic

if you’re a martyr then yes it’s par for the course

If you’re not, then no it’s not.

@IvorTheEngineDriver

OP is not any less important than her daughters

and she is clear that she is at the end of her tether and desperately needs a break

try having some compassion

@PomPomDahlia27

Oh OP I really feel for you. You sound like an amazing mum and like you have really been pushing yourself to your limits for a long time.

My advice going forward (you can take it or leave it as you see fit):

• Please look after yourself too - physically and emotionally. If you need some weekends away to have a break and recharge then do that. Maybe you could try something like a weekly hobby where you have ‘you time’ set aside at the same day and time every week and your DH or others have to step in for your DD in that time instead of you. And see if you can access any support for carers, there are likely to be organisations near you that can help with support groups, carers advice helpline etc.
• For your DD2 I agree with others that now is a good time to consider how she might live more independently. I’ve seen your examples and it doesn’t seem that your DH says anything too horrendous. To me it sounds like your DD needs help with her anxiety and her (over) reactions to triggers.
• It’s good to see she has weekly counselling and I hope she finds that useful. However, I think she would really benefit from Cognitive Behavioural Therapy (CBT) for anxiety. From my experience, counselling tends to be more passive where you can talk about difficulties with someone and express how you’re feeling. But CBT is different - it is very active and teaches you skills to manage your anxiety, like giving you a toolbox of strategies to use when you get anxious. CBT is about changing your mindset with how you deal with triggers. I think your DD could really benefit from this, but as a heads up, CBT is hard work and the person doing it has to be prepared to try to change e.g. their thoughts and be prepared to try out the new strategies they give you.
• Have you heard of Brain in Hand? It’s a phone app to help people cope with anxiety. The idea is you have strategies you discuss with a staff member in advance to help manage anxiety when you’re struggling in the moment. Then when you’re in the moment, you go on the app and it reminds you of what strategies to use. I’d recommend looking into this. Your DD might find this really helpful. But two things to note: there is also a response service on Brain in Hand where you can talk on the phone or text a trained member of staff when you’re feeling overwhelmed and they can try to help you, bring you down etc. However just be aware if your daughter uses this there is a general limit to how much you can use the response service (something like once a week) and it sounds like her needs might be a bit beyond that. But, she probably would still find the other parts of the app very helpful. Secondly, Brain in Hand is not cheap, so you’d want to see if she can get it funded (for example Disabled Students Allowance, Access to Work, adult social care, paid for with PIP payments etc.).

Best of luck to you and remember to put yourself first sometimes and engage in some self-care - you definitely deserve it and need it!

But what about dd1?? Even posts that mention her and her struggle/being over looked you seem to ignore and talk about dd2? This post for example!

Ah you're right, that's sad though as wonder if that's learned behaviour as she knows her sister is her parents main focus due to the hysterics and demanding behaviour.

The only holiday I'd be organising is for the two exhausted parents.
You both sound burned out, and who wouldn't be in your situation? Being a carer is harder than anything.