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 not about pleasing everyone. Its making sure dd doesn't become resentful and ds doesn't become so distressed he headbangs the wall and needs hospital

i think let her miss a day of school and do it during the week

does he accept anyone else at all?

Tricky but playing devils advocate what itlf you were seriously ill and couldn’t look after ds? Your dh would have to get on with it wouldn’t he?

are your entitled to restbite care?

Could you all go

Go. Your DH will have a horrendous time with your DS. But I would bet that you've had your fair share of horrendous sleepless nights and meltdowns with DS too. You've handled them for years. He can for two nights. It might give him a better appreciation of what you deal with 24/7. Or it might mean that DS learns that he can trust his father too, and begins to allow both of you in.

Your daughter really matters. I know too many families with an SEN child where the NT child constantly gets overlooked and it does real damage. Your son and your DH will survive.

I would organise it so that your DH gets a good night's sleep and a break the next day & night, and that you bring back very nice presents for them both.

You know your DS best. Would it help to explain that you are going away for two sleeps and list in advance all the things he can do with his dad while you're gone, or would that stress him?

My SEN DS would have been comforted by lots of prep and info e.g. Mum and DSis are going away for two nights. We will miss you so much but we have to go to London and it's far away. We'll bring you a present. What present would you like? But he is HFA and I don't know if someone further along the spectrum would find this reassuring.

If he's in danger of headbanging the walls, can you discuss with GP the possibility of a sedative or tranquilliser to give him if he starts to get extremely distressed?

I’m sorry you’re having to make this choice, it sucks.

I don’t have experience of parenting a child with autism but PP’s suggestions of a gradual build up sound sensible.

what does your DH think?

You and your DD need to go on this trip. It's so important for the siblings of disabled children never to have their own lives or time with their parents. Don't go as a family, do it just you two.

You say your DH works long hours. This may need to change - as others have said, it isn't sustainable for you to be the only person your DS will settle for. Your DS is going to have to brace himself for the hard work of becoming someone that your DS will relax with. But regardless, even if it's going to be a rough ride for both your DH and your DH for a few days, you really should go.

Take the train and fly back maybe?

you need to start getting some time away to yourself and your daughter deserves it too.

Speaking from the perspective of a parent who also has a DC with autism and a DC without, I would 100% go on the trip with your DD; your DH needs to learn how to support your DS fully.

My DC with autism is a bit younger than yours, but similar in the sense of only wanting me to settle them in the night, supporting them on all SALT and OT, which DP was quite happy to hand off, despite my begging for respite.

Now that we have split, EXDP HAS to cope when our DC go to stay with him. Both DC appear to manage quite well without me physically being there, so it seems everybody was using me as the crutch to prop up the family. This may be the case for you too.

It's very important that your other DC has time and activities just for them, so they don't start to resent their sibling with additional needs. You also need time where you can focus on your DD, and without having to worry about what your other DC is currently doing. Your DS will be safe and fine with his dad, as long as you build up slowly to it, e.g. start with 30 minutes just the two of them etc.

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.

I think you misread the OP. He is severely autistic with limited understanding - he isn't going to 'learn sometime' that OP can't be there for him.

OP I took my eldest away a few times over the years because we could r do things as a family, there is no way DS would have coped, but that was precious time for DD, much needed when you live 'in the shadows'

I would say though if you are getting the sleeper just do it for the return journey, otherwise you (or at least your DD), will be knackered when you get to London. It is almost midnight when it leaves Edinburgh and it's exciting when you have never done it before and you are going on a special trip - it's likely your DD won't be sleeping until at least 1am!

I would take an early train down, they take around 4 hours and land you into central London. Flying is a pita because by the time you wait at Edinburgh then travel into London at the other end you are faster on the train.

I think your DH really needs to learn to copeperhaps build up to this a bitbut having you as the only one who can handle him is not going to work long-term. The longer he goes on knowing you will do it all, the worse it will get.

I agree with @toasted bagel. Get the fast train in the day time there and the sleeper back. That way you're only gone for one night. If you get an early train you can be in London by 11am. You could take an open air bus or (imo better) a boat trip past Westminster, to Tower and back, having lunch on the boat on return trip then go and visit Buckingham Palace, walk around St James or take a bus to Kensington to visit the museums or the Diana playpark. Head back into the West End. Do a bit of shopping for souvenirs. Have a pre-theatre dinner, go to a show, go for late night ice cream in Soho then back to the station to pick up your night train.

You could do all that in a day.

That's a fantastic idea actually.

We have been awarded overnight respite ( 2 days a month) but unfortunately he would need to go to a specialist foster carer or respite centre. Both have more kids then spaces so he's never been yet.

Dh can cope and does his best. He isn't the issue here.

I would take her.
If it were my DH left with the son I would possibly think about a plan B, like a trusted relative or someone in case things got really unmanageable for him, but then again they may not and all might go OK.

As the sibling of a disabled child (now an adult) please do the trip. It’s so important for your daughter not to grow up thinking that her disabled sibling’s needs come first ALL the time. I can only remember one day out with my mum and it was when my school was closed for voting and my sibling’s wasn’t. Every other potential day out was changed or cancelled due to sibling’s needs.

What’s the worst that could happen, @Mynameisnotsweetheartordarling ? Asking as the mother of a headbanger. Would he be safe in his bedroom? Would he keep banging or would
your husband be able to slip a pillow under his head until he stopped?

Have you considered trying to get funding for a Safe Space?

www.safespaces.co.uk

I know it’s not the solution this time, but might be worth looking into if it’s going to give you a bit more freedom and him somewhere safe, enclosed and comforting to go when he’s distressed.

We already have one !! fantastic things

Ah, that’s good, @Mynameisnotsweetheartordarling. In that case, you should definitely go and have some much-needed respite and 1-1 time with your daughter.

We are going to do the trip.I completely agree with you. she is such a kind and loving sister who frankly deserves this trip and some tlc.

So we are going to go during the week leaving early to get a train down then sleeper train home. Ds will have school and mil has kindly offered to stay and help dh. I'm also going to make a socal story for him. Also dh is going to take him for icecream and a new toy or two

Good decision, OP. I hope you and DD have a fabulous time and that things go okay with DS at home.