to go to London with dd9

[Mynameisnotsweetheartordarling]

dd has wanted to go on the sleeper train for a while ( Edinburgh to London) and have a mini break there. She wants me to take her and i would love to do iy lt as it's exactly what both of us need just now.
My thinking is sleeper train Friday night spend day in London sleeper train back home Saturday night. Her dad could take her but she wants me and i want to go.
The issue is ds6 he's severely autistic with limited understanding and speech. He only wants me wont settle for dad or anyone. He wakes up during the night and will only let me settle him. Nappy changes washing etc only me. If anyone else tries he becomes extremely distressed and violent.

I really want to take her wtf :(

It's a tough one bcause if you stay at home with son all the time, your daughter misses out.

Have you ever spent a night away from your son ?

If it were me, I would take my daughter and leave son with his father to try to cope as best as possible. Your daughter needs some time with you too.

Only when in hospital once. He didn't cope

I need time with her too.

. Do you think he'll cope better with you disappearing for the weekend? Much as you want to, it doesn't sound feasible.

Very very tough. I’d be inclined to agree that you should go and let DH cope as best he can. However, that depends on what “not coping” looks like.

Sounds like you could do with a break!

While I understand your situation op and how it's not good for your son, I really dont think it's a good idea for you to never have a moment away. Everyone needs some respite.
You are no different.

Can your husband look into some extra support or help for when you are away?
I'm not sure exactly what to suggest but some fantastic people on here with lots of info will be along soon I'm sure.

I don’t know how recent the hospital night away was, but I do think there is going to need to be an alternative option to you doing 24/7 care of your son eventually, and spending time with your daughter is just one good reason for that.

It will be difficult for him and his father, but in the long term it will be important for everyone that it is possible. Do whatever you can to minimise the things that trigger your DS while you are away, but I think you should go.

Can you apply for respite care to help with him while you go?

Yes could you get a night nurse or something?

You need to build up slowly to this trip. It's an amazing goal to have and I really, really think it would be great to do it.

So you need to either think what support does DH need to cope/or what support do we as a family need that regular respite becomes possible? I think the second goal is going to be better for you all as a family, so what do you need to help you get there?

Do you have a social worker? In Edinburgh, Enable and Tailor Ed are both brilliant services too. I know a family with a severely autistic wee one and they get weekly respite through Tailor Ed, but that was accessed through social work.

I would take your daughter. It's sad that your son will be distressed, but he does have to learn sometime that you can't be there for him 24/7, 365 days a year. That's just not sustainable, nor fair on your daughter.

Can you start including DH into DS's routines and build up to him doing them alone sometimes? I don't think it's going to be enjoyable if you're worried about DS and not really present with your DD otherwise

Agree with PPs, two nights away is too much for the first time. You need to start with one night, but build up to that as well: leave the house while your husband/carers do a nappy change etc.

I can't offer any advice on the situation with leaving your son while you go on this trip, but wanted to let you know that the sleeper trains don't run on Saturday nights so you'd need to travel home on the Sunday night and be away for 3 nights. Would that be too long to be away from your DS?

Build up to it by including dh in your ds' routines.

I would do it. Your daughter needs this time with you. Work out some strategies for dad to use with your son, whilst accepting that they will be stop gap measures to try and keep him less distressed, not as good as when you are there. Do you work? As it sounds like there may need to be a few days after to resettle him into his routine. It's always tough when one child has more obvious needs than the other- but your daughter obviously needs, and wants, this time with you. As hard as it will be for you, your son and your husband, I'd be doing it for her.

When i went into hospital it was a planned admission. So we build up to it with professionals involved. It's definitely an issue about lack of respite for me tbh. Dh works long hours due to me unable to so getting him involved would be tricky but doable. Another option is to go during the week and get a normal train back the next day. She would miss some school but she does well and school will be understanding.

A second option would be for us all to go and me and dd going out alone when there for a bit.

I know it is really difficult having a severely disabled child. And I know he is still young. But having a disability doesn't mean you can never be upset. He may not understand it or like it, but it won't harm him for you to have little bit of time away. But it might harm you if you have to be there all day and all night, all the time. And it might harm your relationship with your daughter if she never gets the time and attention she needs from her parents.

Just to let you know that the sleeper train doesn't run on Saturday nights - the last direct train back from London to Edinburgh is at about 6pm I think.

Could you do a special day out in Glasgow or York or somewhere instead? You'll get most of the quality time together while awake.

That would be better but she really wants to go on the train. She deserves something nice that she wants.

Thanks for that perhaps during the week would be better.

Well, you're going to have to work it out 🤷🏻‍♀️
You can't please everybody in your situation.