Not helping my dsis with her SN child

[Ghostedbyfriend]

Not UK based, but would go back for one month during the summer. During the summer holidays,I have watched the children of other siblings. Took one NT niece for 5 days to our summer cottage, and another NT niece for 4 days whilst the siblings worked. We have children ourselves.
One sibling who is a single mum has a SN child (10), non verbal with challenging behaviour. Said child gets daytime support whilst my dsis works, however she thinks I am being unfair as summer cottage would be more fun. But I explained that I couldn’t keep my SN niece safe, because she’s a darter and she does not listen. When she was younger and smaller I would watch her for 3-4 days, but now that she’s more grown and larger (overweight) I can’t simply lift her out of “situations”. Sibling acts all hurt her child is being excluded from fun and not treated equally. In my defence, I did watch her over one weekend to give my dsis respite, but apparently that was not enough as I did not take her to the cottage. I watched her at my mother’s house, whilst my dm was busy with gardening and cooking etc (she usually watches my SN niece during the weekend).
Whenever I watch SN niece, my DH has to take full charge of our DCs as SN niece needs 110% attention, it’s simply not fair on my DH, my kids are primary aged. For example when I was talking to dsis over a cup of tea, my niece took a glass she was drinking from and threw it on the tiled floor shattering glasses everywhere. She threw it on purpose, for attention I think.
Yet, my dsis thinks I am being unreasonable for not giving her one week of respite (she thinks watching her child at night is a lot of work)… My DH has put his foot down, he asked me not to bring my SN niece to the cottage as she’s a lot of work and disturbs our family dynamic whereas the other nieces play well with our DCs.
I do feel very guilty of not helping my sis out but I also feel my DH won’t be able to cope. It’s our holiday after all. So AIBU?

It's really disingenuous to edit my post like that. The OPs DSis gets infinitely more help than most parents of SN children, and has more time to herself than any I've heard of.

Her DM has her DN every weekend.

Her DSIS also has holidays away from DN. it sounds like the sister gets a ton of support and just wants more and more people to fob her daughter off on.

But what’s your point in this context @ThickSkinnedSoWhat ? OP should put her family and their holiday second and look after the DN in an environment that ever DN’s mum said would be too challenging for her? And it would be ‘selfish’ to do otherwise?

And yet, we have no idea what OP's sister's mornings, evenings and nights look like. I mean, having similar children I have some idea but it coild be really, really difficult.

Also, nobody in this family, except the sister, will have to wake up every day knowing that they will have to do this for the best part of another decade, if not much longer. Taking the child, voluntarily, for a week, or even most weekends also isn't comparable.

Just because someone is your sister you don't through out demands like that.
There is no way I would put my own family in that position.

I think you have some very CF friends, I hope you say no.

But I do think OP’s sister is getting to be selfish quite a lot. Having her DM look after her child all weekend every weekend and every time she goes on holiday is extremely selfish.

I think @Ghostedbyfriend should do whatever she likes but be honest with herself about what she’s doing. Including disabled people in any real way in your family will take work, helping you sister will take work. Resources are limited, be they time or effort and when allocating them if you give everyone the same the one who needs more just to attend will miss out. You don’t need to minimise what dsis does or inflate the help she already gets or any of that.

Or she’ll be teaching them to avoid heading over to the UK for holidays in the future, unless they want them to be hijacked.

The DH has quite reasonably said no. They’ve come over to spend time together as a family, not to be divided with one spending their time looking after their own kids, and the other providing childcare for the niece. It doesn’t even sound like OP even wants to do it, she just feels guilt for not.

I dont think any of us are in position to say or know how much respite is enough or how much help someone needs. Its not a logical thing. Its about how an individual is coping. My DH had a total nervous breakdown just from the stress of thinking about our SN childs future and dealing with the LA around schools, even though I was the primary carer and he had plenty of respite from actual day to day care, including business trips away from home, he wasnt coping and fell apart. He spent 9 months unable to do anthing but therapy and I wish we"d all understood the emotial side more and how things like perceived rejections of our child impacted him. Respite is about what you need to cope rather than what other people think is average or enough.

No, it isn’t comparable, but the sister having it hard does not mean OP has any responsibility here. It’s not her fault she’s ‘got it easy’ any more than it’s the sister’s fault that she’s got it hard.

@OoopsOhNo I'm pretty sure the OP's mum is probably feeling like that too.

Nobody is saying that it's not hard. People are saying the DSis needs help, but she has help, and the OP has helped. People are saying that the DD is being excluded because of her disability. She's not being excluded because of her disability, she's being excluded because the DSis isn't facilitating time with her cousins, she wants someone to give her even more time to herself and they don't have the skills to do that 1:1, especially as DD gets older.

If you have SN DC, you know that as their parent that you are better equipped to manage them, keep them safe and comfortable than anyone else would be. Wouldn't you be happy to do that so that your DC could bond with their family (maybe allowing their family a chance to improve their skills too) rather than just leave them to muddle through it alone so you could have yet more time to yourself?

I don’t think you’re being unreasonable at all. You’ve asked her to come and stay with her child?

You admit that you feel unable to meet your niece’s needs and keep her safe. I don’t think you should feel any guilt for feeling that way and admitting to it.

I really feel for your sister but it sounds like she already has quite a lot of family support.

I don't think any help is reasonable hence I don't bother asking for it? Literally what I said.

OK, making several assumptions but if the child (like most disabled children from my experience) gets up at 5am every day and goes to bed at 10pm but is in school or respite from 8-4 (being generous) the mum is caring 9 hours a day Monday to Friday, and that's assuming no night wake ups, which is rare in my experience. = 45 hours in working week.

On the weekends child is with her grandmother, I'm going to assume she is again dropped off at 8am on Saturday and picked up at 4pm Sunday = another 9 hours weekend care.

= 54 hours a week even with respite, every week

I'd also imagine that the respite / school doesn't operate bank holidays and across all 52 weeks of the year. I'd be surprised if the child's grandmother cares for her every single weekend or takes her for more than 1 week of holiday a year, but could well be wrong there.

I'm definitely not saying that OP should have to take this child for any time at all but I'm feeling a bit defensive on behalf of the sister with all the "how much respite does she need?" type comments.

The sister can't even cope with her own daughter full time, with either school or her parents stepping in to help. And that's in a supposedly adapted, safer environment where she has all her toys etc, and yet she expects the OP to step in and look after her daughter for longer than she does, in a brand-new, non-adapted environment where there'll be more emphasis on making their own fun and she'll have more kids too look after than her sister does . The OP has even offered to take her DN so long as the sister comes too but the sister won't because she wants to absolve herself from any parental responsibility at all. The sister is in a sad situation but she's a complete CF.

This is so relatable.

@MollyRover and @notlucreziaborgia just seen you posted while I was posting my massive comment 😆

Yes, don't think the OP has to take DN at all or that the girl is being "excluded because of disability" - completely agree with you.

I just feel for the OP's sister- we have way less respite but I have a DH who can take on half the burden all the time. I don't think I'd cope on my own at all, not sure how single parents of disabled children do it tbh.

I completely see why she’d be so upset.

But I work with SN kids and there’s no way I could look after some of them on my own, especially in an environment where they could run or be unsafe.

Their parents have locks on all of the doors and some are literally locked away at nighttime for their own safety.
At our school we obviously have locks on all of the doors and have 10ft high fences around the entire building (one child still managed to get out and run straight into an oncoming car).

The majority can go out on trips but a couple just can’t for their own safety. It makes me so sad but unless it’s your own child I don’t think you should ever take the risk of putting them in a dangerous situation.

As a single parent I know how exhausting it can be and I’d tell my sister that I’d be more than happy to stay at hers for a couple of nights once a month, so she can get a hotel and have a proper break.
But I would not be taking DN somewhere where I cannot keep her safe.

Does your sister not get overnight respite?

I know it’s not the point of the thread but I wonder if your sister could look into residential care.

Its such a difficult decision but if DN is getting bigger and stronger then it may be the best solution.

I’ve found being a single parent incredibly difficult, especially in the younger years and I don’t think I could have coped if my child’s needs were as great as DNs.

@OoopsOhNo completely understand, you're right, it's difficult for any parent to be a carer for a DC with high needs and 10 times more difficult for a single parent. I just feel like a lot of posters are projecting their own situation onto the OP which is in no way relevant.

Also agree that respite is about what a carer needs and not what's reasonable, it's a great point well made. The OP just isn't in a position to provide respite for her DSis and shouldn't be expected to to her own family's detriment. That is where her DSis becomes a CF.

It's clearly what DSis needs. The DM is the one with the burden of care here, holidays, weekends and some overnights is most likely a large chunk of the DNs free time and DSis is asking for more from other family members.

The OP has even offered to take her DN so long as the sister comes too but the sister won't because she wants to absolve herself from any parental responsibility at all.

Have the parents of cousins who get to stay at the lovely holiday cottage also absolved themselves of any parental responsibility at all? Presumably their kids go to school and their parents work, presumably they also have varying degrees of family support, they certainly have a week while their children are with their aunt.

Why is it ok and indeed expected that parents work and kids go to school and might spent time with grandparents and extended family, but when it comes to children with disabilities they’re fobbing their kids off, dumping them on someone else etc etc when they’re basically doing what every other parent does.

Life with a child with significant disabilities is very hard, you can feel like you’ve run a marathon by the time they’re up and out for school - and now you need to go to work and run the house before starting all over again when the child comes home from school. The emotional impact of knowing your child will always need this level of care, while also knowing the supports around you will lessen over time is awful.

Im loving the “I wouldn’t do it” comments while also berating the mum who apparently isn’t doing much care because she works and has a holiday once a year.

What support are the other siblings giving your sister, do they regularly give her respite. Perhaps you could invite one of the siblings to come to the cottage for a weekend and you could work together to care for the SN niece.

I know it’s not the point of the thread but I wonder if your sister could look into residential care.

Residential care is almost impossible to find, if indeed you can get funding. Respite care is also nearly impossible to access - there aren’t hoards of services just waiting to care for your disabled child. Which should come as no surprise given the folk on this thread who wouldn’t do it.

Is your DM okay and getting enough support? She may be at breaking point, but not feel able to speak out. If DM reaches burn out it will be terrible for all and she also needs to be considered.

Is a compromise for your DM and niece to both come for a few days and you try to give DM a break for part of the day?