To not know when to just go 'fuck it, sack off the holiday and go home'

[kaleidoscoperuby]

We're on a UK holiday and DS14 is just vile. He had no complaints about the planned holiday when it was booked 18 months ago but has been saying recently he didn't want to go. We offered for him to stay with GPs, he said no. He's angry, rude, uncommunicative, storming ahead, tutting, sighing - generally has a face like thunder.

He's autistic but well travelled and we're pretty good at dealing with his needs - was all factored in.

We're away for 10 days with a week to go. I'm just thinking we should go home and be done. But it seems like such a waste. We're many hours from home.

When do you give up and go home? Is that just teaching them that behaving badly = getting what they want?

When do you stop travelling as teens are so vile? We have quite a few abroad trips planned over the next few years but I'm considering cancelling them all but I really love travelling (and we won't be able to leave DS at home for many years due to his needs so no holidays for anyone).

There is hope.My dd is 19 with autism, adhd and other diagnosis .We’ve travelled a lot. Had some horrific experiences and some amazing. The lowest point was a beautiful cabin in the USA at 15 when she screamed all night because her brother was vomiting and she couldn’t stand the noise. She was anxious and couldn’t cope with the noises which are part of her sensory profile.

We’ve been a week in the uk this week and I have Covid cough. She has handled it amazingly well. I’m so proud of her. She has got disregulated at times over a couple of things but her coping skills are so much better.

You will get there.

You know nothing about my child. Challenging or confronting my dis regulated child would have been pointless and against everything we have been told as parents by processionals to do.

It is an age when they can start to be as you describe unfortunately, autism or not. In my experience it can depend on where you are going and what you are going to do when you get there. Some things are very boring for them, including things that they used to like. I find it just takes a bit more thought. But having said that we still had one holiday where my eldest refused to participate in almost everything even though we were in a lovely place.

Mum to ASD daughter here. We're on hols too, with another family, and Christ alive it's so tough, our daughter has had two massively dysregulated days and oh I just want to cry, the other family also suspect neurodiversity with their child yet their kid soooo much easier to manage while mine is screaming, hitting me, completely overwhelmed etc even while desperately wanting to play with the other family's kids. Firstly, you are doing nothing wrong, it is HARD, and not all kids are made the same - so block out anyone telling you to just be tougher, including the plonkers here, you and I KNOW that doesn't work for autistic kids. Secondly, the facebook group for 'Connective Parenting using NVR' may help if you ask some advice there (or search the chat for 'holiday' as lots of similar stories) - in short though, focus on building your connection with him above anything else, so if you tomorrow you need to spend the whole day just doing what he wants, including staying at the accommodation watching films that he chooses, then do it (if you're contemplating going home anyway what's the loss!?). maybe even do that for two days. He's probably stuck in a shame cycle of knowing he's making you guys unhappy but knowing being able to stop - fostering the strongest connection you can with him helps as helps counter the anxiety and fear he is feeling. I honestly would stay as long as you can on your hols but - unfortunately, and as we know it's the hand we get dealt with ASD kids - downgrade your expectations massively and savour the small joys - getting shopping in/making meals you wouldn't at home, taking that hour here and there just you and DH to have a coffee in a new pretty place, a solo walk somewhere, and do whatever you can to avoid comparing your hols to what you thought it would/should be. Parenting an ASD kid is the hardest thing in the entire world and you deserve every medal going, sending so much love to you xxx

And as for lecturing parents of autistic children on how to parent autistic children 🙄

What a nasty and ignorant post.

Oh I sympathise. Out recent holiday in the UK with 25 year old NT DS was horrific. All the things you've said. Bored but doesn't want to do anything, everything is rubbish, foul mood. Really ruined the holiday.

But then I did the same at 15 at a family holiday.

Teens are just horrible human beings.

@kaleidoscoperuby - could you get respite care in the future, so that you and your dh could go on holiday together, knowing your ds would be safe and well cared-for?

You are having such a tough time - I wish there was something I could do to help, but all I can do is offer you my sympathy and a massive, virtual hug.

I'm actually laughing at your post. Do you know why?

I'm ND. My DC = ND. I work with - wait for it - children and adults who are ND. I was quoting another poster who is autistic with an autistic child.

Your way is not the only way to parent a ND child. Get off your high horse.

Ironically I was about to applaud your previous post about your daughter's progress and then I saw your next post was attacking me Ah well, what the hell, I'll applaud you anyway

Ah mocking and judgemental, you must be so proud of yourself .

All my children have autism and adhd as do I and yes I work with children who have autism too. I’ve also had a lot of involvement and advice from professionals.

You wrote

“The biggest mistake I see parents of autistic DC making is being terrified to challenge or confront them.

The world beyond the family home will not pander to any child. It is setting children up to find the world a harsh, rejecting and terrifying place facing a lifetime of isolation and victimhood.”

You were the one pushing it’s my way or the highway and scaremongering to boot.

I don’t need or want your applause thanks. 🤔

Is there anything you can do to make the place more homelike for him? what is it that he is missing or is it simply that he can not cope with the change? What does he do at home/ what do you do when he is stressed there?

If he wasnt autistic you could send him to a room on his own until he could behave - would it actually help him to be in a quiet room on his own as it does help some young people?

It is difficult to change other people and sometimes you have to accept what you can not change. I wouldnt go home but I would take it in turns to get out of the house and give him as little attention as you can when in the house. Even autistic young people should not get bad behaviour rewarded.

I think it's the downtime he needs. But he almost needs all day as downtime as avoidance for doing anything related to holiday which means we're all stuck in the accommodation and we may as well be at home?

Surely you can take the morning out on your own to go for a walk, visit a local attraction, sit and have a coffee somewhere pleasant and do something for you and change over with your DH at lunchtime? You can read in your room while your DS does whatever he wants to do. I presume he'd be happy spending all day on the computer.

Then perhaps you can do something together in the evening. Make it clear to him that you've worked hard for this holiday and you're not going to let him ruin it. Good luck.

I haven’t rtft so might be repeating.

First - solidarity. It’s really hard going. We had a really hard, horrendous trip with ds but when he came back he regaled gps and teachers with tales of our adventures making it sound like the most enormous fun. I’ve accepted that there’s often an element of type 2 fun for ds and moaning is a given.

He was 13 on that trip, puberty starting to rear its ugly head, and his capacity to manage dysregulation had nosedived. He had a much more sophisticated sense of danger, and social awareness, and he was deeply overwhelmed in a way he hadn’t been as a child. I’ve had to level up my game, learn a LOT about sensory regulation and emotional regulation and I’ve become a lot more attuned to the challenges holidays bring. .

I find it helpful to remember that when he’s behaving badly, it’s usually because he’s having a bad time. And reducing as much of the sensory overload usually helps.

But I’m also going to say that, contrary to the advice of the experts, meeting agitation with endless calm and patience isn’t always best. The times when I’ve lost my cool with ds have been when he’s felt heard and understood, and sometimes he needs a reason to pull himself back. I’m not talking about emotional abuse - but showing emotion and reaction.

In all honesty, I do think my ds would be better off staying home, but he’s also not ready to be away from me any length, even with gps. And I don’t think the gps would manage a week either - they experience his masked version and he couldn’t sustain that.

When we travel we bring ds’ duvet and pillow (vacuum bag), melatonin and organise a fan for nighttime. Making bedtime smell, sound and feel right goes a long way. Is there something like this that you could focus on?

Other tips: We find books a great way to regulate and calm off screen, and humorous movies and cartoons can be a mood reset - we try and find a boxset to watch as a family ritual after dinner. You can create routines and rituals out of thin air - eg we always have orange juice for breakfast on holiday. We have a treat after lunch. Finding those anchors in the day can help stabilise his sense of time.

Also for any recurring arguments or power struggles, I find a written rule/policy helps. We have rules about wearing sunblock, and how much water to drink. It’s not anbout being controlling but reducing decision fatigue and the endless overthinking.

If we’re going somewhere, we discuss the plan (night before or morning of), pull up some basic info, check the menu of the restaurant. Having a plan is crucial. I’ll also build in some wriggle room (“and if I see an antique shop on the way I’ll need to go in for a look”)

obviously it’s all individual but there might be something useful, or it might trigger some ideas of your own. I’d love to say there’s a magic formula but I haven’t found it yet. But he’s 15 now and the last few holidays haven’t been as horrendous as that one, so I’m tentatively hopeful.

hope it gets easier op.

The irony of YOU calling me judgemental

We've chosen different approaches. My sympathy is with people like the OP who get told their lives and needs don't matter because their life is now all about the needs of their autistic child. Life is short.

I won't derail the OP'S thread engaging with you.

We had a particularly horrendous holiday with DS when he was14 in Istanbul-he was NT as far as we knew at the time -but was diagnosed ADHD when he was19.

He clearly had something going on with school mates and a girl when we were away and was glued to his phone, didn't want to go anywhere and in a bad mood- after a few days of this we left him to it in the accommodation with his phone and strict instructions of where to meet us and at what times for meals - on that front he was actually efficient and did as he was told-

We made it clear that the holiday the following year would be the last with us- we went to California and actually had no issues

I feel for you OP- NT teens can be hard enough

I am close to sending you both to your rooms to calm down, @Gr33nSpot and @BurnerName1. Don’t make me use my scary mum voice.

😉😉😉

Nobody is saying that.

Mindfulness activities for both of you are helpful. I’m painting tonight. She is reading. She watches her to shows on a loop on her laptop to calm down. Refuse to pull my daughter or myself to bits. Or to do the things we have been told aren’t helpful. She got upset this evening. Recharging and starting again tomorrow.

Just to add my sympathy and support! We took our DS’s to Gullivers World Theme park today and my DS 5 (it was a treat for his birthday) was beautiful and excited and sweet and his older brother who is 8 and has ADHD and ODD was a complete shit from start to finish, purposely ruining it for us all despite being super excited to be going before we arrived! Once there he decided he remembered he hates it there and didn’t want to go on ANY rides or play areas and made fun of his brother for wanting to engage in any activities 🙄 it was VERY difficult and cost a bloody fortune!

OP, where do children from his school go to after 18?

I've just re-read and realised you're in the UK. I think I'd go home if your life would be easier once you were there. I know it's difficult as you don't want him to feel he can control everything, but if he's making your life a misery and your life would be better if you would be home, then I'd do it for my own sake if not his.

Is there anyone who could stay at your house another time so that you could have a break with your husband?

This shows my ignorance but is there any kind of school with boarding facilities? It sounds as though it's incredibly tough with him at home.

And I would definitely cancel the future holidays unless you could safely go without him.

Can you build up gradually over the week?
I also had a really rocky few days on our last holiday with my autistic dc. The whole change in routine and environment was just too much and the first few days were spent telling us how much they hated it, didn’t want to be there etc.
We reduced demands right down and slowly they started agreeing to little things, first a walk to the shop to get some treats. Then a walk to the shop plus eating treats on the beach. By the end we managed to have some days out, albeit scaled down a bit.
Its hard. When at home you have your usual routines and accommodations which you are used to. For me it’s things like holidays that really highlight how different our family is and how much effort we have to put in above and beyond to make it work. But on a positive did end up having an overall nice holiday and I was really proud that my dc managed to spend some quality time with us.

I am frequently called abusive for expecting him to do small jobs round the house

Just ignore the people who say that to you. My son is 33 and has very complex needs that have involved 2-1 round the clock care for the last 10 years. He lives at home with me and live in caregivers who help look after him in shifts. They do his laundry and ironing but he takes his laundry to the laundry room, puts his ironing away, washes his plates and cups, gets his gym things ready, does little tasks for me, does his own shopping once a week with a list he’s written, can bake using packet mixes, helps the water delivery men with carrying the giant water bottles into the store room and replaces them on the water cooler when needed - I’m sure you get the picture.

My sons never been to school. It’s not what he needed but it doesn’t mean to say he didn’t need an education at all. He just needed one to suit him and that’s what he got. He learned how to be. And for all of his very complex needs my son is actually very independent even though he couldn’t be allowed out the garden gate alone and we have cctv all round the house.

Teach your son to make his bed and cook a simple meal like scrambled eggs and bread. Also how to wash his plates etc. None of these things have to be done perfectly. And remember - dont listen to people who say you’re being cruel

I feel for you OP. Longer term, he doesn't have to live with you until he's 'ready' to leave home. There is supported accommodation etc.

Life is hard. You decide what to do. If you enjoy travelling, travel. May be understand what kind of activity he will enjoy and taylor it also around him. Life with kids with needs is not an easy one. We all know it and just suck it up, most of the time , without even saying a word.

Hello OP, I am a parent of an adult child (26) with severe learning disability, autism and Epilepsy and so a bit further along the road than you. He is our eldest child of three.
he was younger the typical holiday- beach, soft play, trains etc worked well… when he got older, as you are finding out…not so well.
What we have found has worked for us and his siblings…

1 We have accepted that until he is in full-time residential placement which we think will be in the next 2-3 years, that we will not be having long 10 day/2 week holidays. He does go to Respite, usually only for 2 to 3 days but once a year we get a week. We go away for five days- we have absolutely no guilt about this.

2 Throughout the year, when he is at Respite, we go away for one or two night city breaks and we really enjoy them. We see anything we want to see, eat well, stay in lovely places. Because we can only go for two night(very occasionally three), we have been known to to go back to the same place😂

Our workplaces understand that we have no say over when we get Respite and so they are very accommodating about giving us that time off. We have not requested two weeks in one block, for years! Little but often time away from work

3 We take him on holiday every year to places that are entirely devoted to him and his interests/ obsessions…. We use his PIP for this. If we enjoy it, that’s entirely incidental… very often because he’s happy then we are happy.

4 We have taken a carer with us on holiday and that worked really well. We went out and about during the day and the carer stayed with our son or went out with him and then when we returned they had their evenings and nights free.Carer could even be a member of your family like a grown-up niece or nephew.

5 We have short breaks with our other children and these are a real highlight of our

All our friends children are now grown up and they have such freedom to come and go. That can be hard to witness, but the steps above have helped us to carve out a life for ourselves - just shorter bursts of time but very regularly, It helps us not feel that our entire life is not completely dominated by their needs.
I wish you well OP and I hope that you find a way that works for you.