Am I being selfish not agreeing with husband going out

[Elholley]

Please can someone give me some advice as to whether I am in the right or wrong. It’s very long I’m sorry, but I’m struggling right now.

My husband and I have two autistic children under 6. The eldest has very difficult behaviour and has complex, high needs. He requires a 1-1 at all times, is non verbal and I can not take him out alone with his younger brother. I have in the past and this is actually very dangerous with him running away into roads, having to be restrained, whilst having a younger child with me. There has been awful times where I have left crying after taking them out together alone, I now don’t. My husband and I take them out together and that is still very difficult with meltdowns/running away etc.

My husband works full time and this includes Saturdays. Our son has high sensory seeking behaviour and if kept inside all day is jumping off the window sills, climbing furniture, out of control. So we have to take him out to meet those sensory seeking needs to the park, walks etc. But I can’t take him and his sibling alone, so we do this around his work. So we go out on Saturdays before work and Sunday day times when he is off.

My husband has single friends and likes to go out to meet them, that’s fine. I have lost friends as I am always looking after our autistic children who can not socialise with my friends children. I can’t go to the theme parks, zoos, events and farms with them in the summer holidays, it always went awful, I started saying no, they stopped asking and I don’t see them. That’s fine as my child’s needs do come first. I do go out rarely but I’d make it an evening so we can take the children out together in the day, go out with friends when they are in bed. My husband agreed and he goes out on weekdays evenings every couple of months or so. We also get a babysitter in the evening and go out together sometimes, never the day as we have to take them out together. He has been on two, weekend long stag dos this year which were important things to go to. So me and the children sat in all day and our son found it very hard having meltdowns jumping from the ceiling! I think he has a social life and I don’t keep him from doing stuff, he can go out and see friends weekday evenings. But Saturdays and Sundays are really taken up by our children who I literally can’t take out alone and have no one else to help me, and they also can’t be kept inside all day.

He came back from a weekday night out and said he is now giving me 8 weeks notice to go out all day and night on Saturday, that is enough notice and that’s what he doing. I said why a Saturday we take our son out that day, I can’t do that alone and it’s also the half term, which means a lot of difficult days in a row alone with both children which is really really hard and I really dread the holidays if I’m honest being out of routine and alone. 8 weeks notice is not going to change our sons needs. I said can he pick an evening I thought that is what we agreed, weekday evenings or Sunday evenings. He said he works 5 days a week and doesn’t get to go out, does repetitive stuff with us on his days off (I said that is because our son is autistic and can only do the same sort of things) it’s his routine, he said this is really controlling behaviour as I have all day everyday to go out and do whatever I want. He claims I can do whatever I want and meet whoever I want.

I have a toddler with me 24/7, house to clean and keep on top of, work part time, school run twice a day, hundreds of letters, forms, meetings, doctor appointments, speech therapy, OT, peads appointments, school meetings, for our son I’m so busy and overwhelmed by it all. I have absolutely no time for myself l, have lost friends as my children can’t join in with theirs or go to the same places, im so isolated, as I’m saying all this burst in to tears. I just don’t get why he can’t go out in the evenings and understand our sons needs and that at the moment it’s really really hard for all of us, I have made so many sacrifices, can’t apply for jobs and have a career in what I’m qualified in because of his working hours. So I work part time in a shop. So we all work around his work. He just says I can do whatever I want, whenever I want, he’s being controlled and I’m using our disabled son against him. I just really need help with looking after him and can’t manage him all day alone with his sibling and he is barely there in the week to help either, because of work. I said if he goes out all day and night Saturday we won’t be able to leave the house which is horrendous for our child, and there will be other days the same that week as it’s half term, half terms I really need all the help he can give possible so our son can leave the house and be able to meet his sensory needs. He agreed to ‘do as he is told’ and cancel the Saturday but who is in the wrong here.

sorry for the rant, but I’m really struggling with dealing with all this right now. I thought we were on the same page but clearly not. Please any options of parents with disabled children, thank you.

He's not being unreasonable to want a break. He IS being unreasonable to say you can do whatever you want when that's very clearly not true. Which he knows really.
He's also unreasonable to call you controlling. That's manipulation right there.
I'd agree to him going away. It'll be grim for you. Absolutely get that. But it would be on the proviso that he facilitates exactly the same for you the following weekend. Apart from it being only fair, it may open his eyes to how difficult sole care actually is!
I'd also insist that you want a proper talk on how you can have a regular weekly break going forward .
You are exhausted and probably rather depressed. It's not great for him working full-time and then having a very regimented weekend but the vast bulk of the responsibility is falling on you.
You're deep in the trenches and you need support, honest communication and a sense of being in this together. The marriage will eventually founder otherwise. Resentment is a killer.
If he won't have a discussion and make a plan you know you have a real problem and I'd tell him in that case you want counselling together if he is unwilling to work this out between yourselves.
Best of luck.

Did you discuss beforehand that you'd go part time and give up your career? If you agreed that would be the plan so be it.

ok I think that’s a shit answer.

When you have children, things change with time.
The needs of a severely autistic child aged 2yo isn’t the same than an 8yo.
What you can do with a 2 yo isn’t the same etc…
And I’m nit even introducing the fact there was no way you could plan whether the other chid was going to be NT or not.

Whatever you agree at one point should never be set in stone. But it should be revised in a regular basis to check if every8be’s needs can be met. Not just the DH or just the dcs. But the OP’s too.
And if that means the OP working part time ur full time needs to be reviewed.

And that needs to be reviewed in the context if the growing needs of two dcs with SN.
And yes it’s shit and hard work. And yes I’m sure the DH needs down time.
But so does the OP.

And yes he is working full time. But so does the OP. Because tbh just dealing with the all the doctors appointments, special school teachers blablabla is a full time job. And her DH is showing to understanding and respect fur all the work she does.

So time to review whatever was agreed.
Nothing set in stone.
And if him going away fur the weekend is too much, then it needs to be reviewed.

(personally I’d Keane him with the dcs for a weekend. And then for a week so he gets a feel of how hard it is tbh)

OP long term can you continue this life? You are both parents, but you are also individuals with needs outside of parenting. There is only so long you can continue like this before one of you breaks. This sounds like a tough situation for both you and your DH. I cant say either of you are being unreasonable but something has to give.

Other posters have suggested your hire someone to help. Realistically something has to change in this situation for everyone’s sake.

This.

OP, you say you often get a babysitter.
If a babysitter is capable enough to look after them, why can't he go out, and then you organise some time too? 8 weeks is long enough. You both can't live like this so transactionally. It's not healthy for anyone.

Would some bigger reins type things help with your child/ren?

You can't live like this for the long run OP. It's not healthy for anyone.

Your children have high needs, but your husband also has needs. So do you.

You need to get respite care or the babysitter and both have time off to unwind. I don't think your DH is unreasonable at all. But the way he spoke to you isn't very kind. He's probably burnt out. As are you.

Seeing HE is the one to go away, why can HE organise a babysitter fir the weekend?

Why is the OP’s responsibility to sort it out?

And how do you propose the OP has equal time out to recharge her own batteries? Who will look after two dcs when she goes away for the weekend?
Because just now the DH has clearly said he thinks she has all the time in the world during the week so he is certainly not expecting her to need more time away Wo the dcs….

Re the babysitter, I suspect the OP means someone who is at home when they sleep.

With a child with such high needs as her eldest, I doubt any babysitter would be able to look after the oldest on their own during the day.
Its not a normal situation with an NTchikd.

Have you looked into respite care? It sounds like you, DH and your other child all need some time too.

Lots of charities offer a few days of respite care that is a type of holiday for the child with extra needs, whilst allowing the rest of the family some off time too.

You can't expect your DH a to be home ever Saturday forever more. Nor should you expect it of yourself. I know it seems impossible to have anyone else help but I say this with the best intentions ultimately you are not going to live forever, you need to work on finding ways that others can help and support your child in your absence.

Also it is unkind to your other child that they miss out on days out and trips as you feel unable to go due to your other child. You need to find ways to allow your other child to be special too.

Hi OP. I’m the mother of a severely disabled DD.
I completely get your situation.
I can’t leave DD with anyone other than DH but even he needs instructions, not because he’s useless but because her needs are complex and change as do her interests etc. and she’s non verbal and absolutely refuses to go for a walk in our local village (which she used to love).
I dread school holidays.
DH has had nights away for various reasons but I never have.
The idea of going to a hotel by myself is one of the worst things I could imagine- I’d be worried and bored and lonely.
Is this particular Saturday the only time he can do what he planned? I’d try negotiating the point - ask him to take Friday off so he does whatever he’d have done with you and kids on Saturday.

I imagine money is tough and I know from experience the pain of losing a career and independence and an income. I know the drudgery of non stop parenting.

For those who think there are people who can help with SEN children just because there is such a thing as respite… it’s really really difficult to set up. I have been working towards my DD being able to spend half an hour with trained nursing staff at a hospice (45 minutes drive away) where she’s been a few times with me: it’s taken 5 years and I still can’t leave her.

To access social care I have to advertise, interview, have trained , DBS check, hire, arrange payment and regularly supervise my employee, many sick days etc. for 4 hours of assistance a week. I’m probably never going to do it because it’s as much of a job as all the doctors appointments etc.

I don’t think tit-for-tat actions help in this situation.

OP - can you sit down with a bottle of wine/cup of tea and maybe plan a night out for you both, using babysitting during that mid term, break it up a bit??

All of this x

8 weeks notice is only relevant if he's using that 8 weeks to organise replacement care.

Can you younger child be left with a babysitter? Or can you take both children out with someone to help?

If you can, then your DH has 8 weeks to find and book someone to help you with the children that weekend.

I agree with other posters that you also desperately need a break - take a couple of weekend breaks yourself this year.
You can also go out weekday evenings - join a book club or something.

Do you get any funding for a pa to help you with the children ? Many special needs children. Have a budget for this may be worth looking into to give you a break or an extra pair of hands when going out.

I don't understand why your husband thinks he needs a whole day and night away?

Surely better for both of you to go out for a few hours at a time, more frequently? Then you both get a chance to develop other hobbies or recreation to help you recharge your batteries for the vital role of looking after your children.

He's not a teenager hanging out with friends and getting drunk any more; he's a father of children with additional needs. If he needs to go to the gym or go fishing or whatever for an afternoon, then that's fine, but just 'getting away' is selfish and feels hurtfully rejecting of his responsibilities.

@VahineNuiWentHome

I didn't say it was her responsibility...

I suggested using the babysitter that she OP has already mentioned she used. And I also suggested SHE organise some time for herself.

But it is her responsibility as well as her husbands. The way they're going isn't sustainable. But I've no idea where I've stayed it's her sole responsibility.

I don’t think either of you are being unreasonable but it is not sustainable for you not to be able to go out.

Others have mentioned it already but I would look at respite care options. A family member of mine was a high needs respite carer and would have children to stay for weekends and sometimes longer. I don’t know how easy these services are to access but it is probably worth pursuing as I’m sure you both need a break from
time to time.

Does your husband agree that both of you are needed to take the children out during the day?

Get a grip! It’s normal to have time away with friends!!!

I would recommend looking for someone you can pay as a carer to help. I was in your situation for years.

Have you looked into hiring a pa, so you can get some respite or you can both use that time to go out etc.

I think social services organise it

Thank you everyone for your replies. I suppose I am feeling guilty about what happened, that’s why I asked on here. After reading all your replies I realise most of you are right in that he does deserve to be able to see his friend on a Saturday.

He does have breaks and see his friends weekday evenings every 1/2 months or so, he’s also been on so full weekend stag dos this year so it’s not like I’m chaining him to the house or anything! So normally he works every Friday and Saturday until late so we go out with the children in the morning and have lunch out and back home before he leaves for work (he stays in bed until 10 on Saturdays as he works late Fridays) so we are limited with time on Saturdays. It’s the same sort of things we do every Saturday, but with limited time we can’t do anything too far away, random and different days with our child can end badly. He understands you can not leave the house alone with them both alone, even when we take them together he is the main carer of the eldest and has been punched, kicked, things thrown at him, and calmed down meltdowns and restrained him. I will 1-1 the younger child. We do also have a disability buggy but the younger one also has a buggy so I can not push both alone, one buggy each. The eldest can refuse to be in this and run away.

He has booked the Saturday off to go to a sports game which is over an hour away, this is an all day and night thing, he will get up at 10, have some food and leave I just thought if he had booked a very rare Saturday off that perhaps we could have tried something new with the children instead of us staying in all day, where the eldest will really struggle and
he knows this. So again with me going away for a whole weekend as some have suggested, he works every weekend. The babysitter we sometimes get can do some weekday, evenings only when they are in bed. He does have another weekend off in Jan, so yes perhaps it can be my turn then! He did say I can go out that Saturday if I want during the argument. But in the past on his Saturday off I have gone to have my hair done, which takes around 3 hours (cut and colour) in which he was like what have you been doing all day?! As he has been stuck home with the children. He also brought this up in the argument saying well you get your hair done on a Saturday… twice a year, so why can I not go to the game. I could go out all day and night that Saturday, that sounds great but in reality I feel quite guilty in that I know he will also not be able to take them out alone and they will stay inside all day, our eldest will be upset and dysregulated. Which is why I would choose evenings only, husband does normally too, but the sports game starts in the middle of the day. He does go to these games in the evenings, when I said why can’t you go in the evening like you usually do? He said they didn’t manage to get tickets and could only get them for this Saturday. He is very unorganised and last minute, if he had been a little more organised would have been able to get tickets to the weekday evening games and wouldn’t have minded not going on the Saturday.

I think some said has he ever had them alone, he has probably two evenings when I have gone out to see friends. He has also had them for 5 hours in the day, once a week for 6 weeks in a row, whilst I worked in the summer holidays. So 6 times and he was unable to leave the house, but I would get back at around 3 and we would take them out then. He did try to take them both out to the park with his mother whilst I was at work on one of these days, let’s say it did not go well and they did not try that again! Now I book all holidays off work, so this Christmas holidays I have not worked and we have had quite a few days stuck inside which has been really hard, so maybe it wasn’t the best time to talk about him going away on a Saturday in the next half term!

I’m not sure how to really bring this up again, but I will try and I think it’s fair that he go. Maybe I will suggest he drop the younger child to someone on the way and collect them on the way back, he can arrange who, as I assume he’s not drinking as the game is over an hour away. But I think that maybe the only way, so hopefully he is in agreement.

Thank you again for your replies, it’s really helped reading other peoples opinions!

I also have no idea how to get help with respite care or a carer to take our eldest out or help with him. How do I go about this? Someone said social services, do I just call them? Some help with our eldest could be good to be able to do some different things with our youngest. Although he has SEN too, his are not as high needs as our eldest and he can manage days out a lot better. Family members would still struggle to have him, for example he would refuse to drink any liquids whilst being looked after by others and can head bang if not calmed down in the right way. Head banging a concrete floor would not be good, husband and I are more likely to see this coming than another family member and can stop it.

No YANBU he sounds unhappy with his lot and moaning about it to his friends. He knows the deal and should put the kids first.

How have you reached that conclusion?!

I think all of this is just so miserable and unsustainable for you both. 8 weeks notice for one enjoyable day and then having that turned down is so sad. It sounds like requesting leave at work!

You both need time away with friends or your relationship will suffer and may eventually fail. Then everything will be so much harder. Find something to do with your friends the following weekend and look into respite care as you both need it.

DS (age 5) has very similar needs to your eldest.

I am separated from his father. We only have the one child.

Week days are easy enough he's in school with 1-2-1 then also has 1-2-1 in after school club - this allows us both to work full time. We split the week 50/50.

On Saturdays he's with me but I have a carer pick him up 9-5 and I pay for this out of his DLA - she takes him to dancing class, swimming, etc. I get time then to do things that I want to do.

Sunday's I have him in the morning and his dad has him in the afternoon.

School holidays he has 1-2-1 at school holiday club.

We've found this is a good balance of education and safe activities for him and respite for us.

Hope you find some childcare for your youngest and some specialist care for your eldest so you can both enjoy life.