Fed up of being treated like I am worthless and a drain on society because I don't work

[elliejjtiny]

Dh works. He used to have a well paid job but he took a pay cut so he could be more flexible for the dc who have SEN and multiple hospital appointments. I am carer to 10 year old ds who has autism and emotional development delay. He is considered "high functioning" but he receives high rate dla and he is in mainstream school with part time 1-1. This is going to be increased to full time 1-1 when he starts secondary school. In a lot of ways he is like a very intelligent toddler, especially with maths.

PIL came round today. They provide regular childcare for SIL's dc but have looked after my son probably about 5 times in the last 10 years. And never for very long. Because he is difficult. That's fine by me. But then they criticise me for not working. It's not just me,( actually they moan about me a lot less these days because they know I will argue with them and point out that they won't look after ds, school struggle with him so how am I supposed to work) , they go on and on about "people on benefits" and they assume things that are just not true like they think everyone on universal credit gets free holidays and they say the benefit system is more than generous and that people should stop moaning and get a job. Fil has been telling me with glee that one day ds won't need me to care for him and I will have to get a job. To me that's like telling a blind person that one day they will be able to see and they will have to give up their white stick. I would be more than happy to work if ds didn't need me to look after him.

I know sil thinks I should be working (although how, I have no idea) and every so often I keep thinking that maybe other people think this too. I've always said that when ds sleeps through the night I will try and go back to work part time but that hasn't happened yet.

Also stated many times, I do not care what the OP does or doesn't do, she's a stranger on the internet. Zero judgement, because I don't really care.

@28andgreat you've said that umpteen times. But if you genuinely don't care, why do you keep insisting on doubling down and making yourself look increasingly more stupid with every post?

I think some people don’t realise how relentless being a parent carer is. I very much hope the OP does get some time in her day to just sit and do nothing. Burnout isn’t nice and when burnt out you can’t help anyone.

I have just got in from work. I have a massive to do list but at the moment I can only muster the energy to sit on the sofa. I will go out in an hour to collect my 15 year old who needs high level of supervision, then I will be up numerous times during the night with him.

I consider myself lucky I have been able to return to work after an 8 year break but it’s not easy even when ds needs are a lot more stable like they are now. I have no ideal how things will work when he hits adulthood but we will just have to take it as it comes.

But you are solving the problem in an odd way.

The problem is people are judging her for being a drain on resources.

so you have propose the op and her dh adjust their life so the same amount of work gets done, just arannged differenly, and possibly same amount of benefits gets paid but in a way people feel less judgy about.

Its just as easy for people to say 'oh that sounds like a sensible, practical set up' and the problem has also been solved.

And me. I just love the casual ageism and stereotyping on here…🙄🙄

So let’s break that down

The DH drops down 20 hours a week from his job so the OP can work school hours (let’s forget the term time part)
The OP then works 20 hours a week term time.
The DH is working freelance and a good enough wage but the OP is more likely to be MW so …. They now have less disposable income. Maybe will now qualify for UC??

So yes it’s a choice. But really? I do you really think this is reasonable choice that the OP should consider? That it’s something worth considering just to be able to say ‘I’m working’.

Thats a very weird idea from someone who also says that it’s ok not to work two jobs tbh.

Well, so do I. But we have got into a situation (globalization, neo-liberal capitalism etc.) where 2 incomes are usually needed, and two part-time jobs won't hack it. You - and I - are asking for a total reset of society and economies so that the economy works for the people, who all share the rewards (and it will also accommodate women's biology and the input they thus put into society and the economy) between them, not equitably (brain surgeons are always likely to earn more than check-out assistants) but with justice and fairness, so that all may thrive and there is equality of opportunity. Unfortunately, neo-liberalism, with its faux choices, makes the people work for the economy, and allows the hoarding of wealth. Societies that work well, have some measure of equality and happiness, are those where the gap between rich and poor is narrow. We have huge wealth gaps, which leads to impoverishment of most of us in all spheres, while a few get to jet off to Davos or wherever to preach to us what they do not practice: austerity. (And austerity economics never works, either.)
And yes, women should not have to compete with men who have a wife to do all the backroom work - that makes a very unjust society. To that extent OP is thinking wrongly - but that is no justification for her PiL and SiL to suggest she is lazy if she doesn't go 'out' to work.
Also, women cannot do all the things that men can do, any more than men can do all the things women can do. To think they can is dangerous and very bad for women.

A solution to what problem, exactly?

Being paid NMW (probably funded by the state) to look after a vulnerable person as TA/ PA/ carer = worthy member of society

Being paid the disability/ caring benefits that you're entitled to by the state to look after a vunerable family member = unworthy. Apparently.

OP (and other parents of children with additional needs) all you can do is the best you can within the circumstances you're in, financially, and for the welfare of yourself and your family. Screw the idiots who lack the imagination to understand that each family is unique, especially when they are hypocrites who do nothing to make your life easier.

I'm a parent carer too. And what people also don't realise when your kids are young - primary school age - is that their needs don't disappear as they get older, and that childcare for a secondary age and older child is virtually impossible to find.

My own son is 22. He's autistic and has learning disabilities. He's very vulnerable, he can't go out alone and can't be left at home on his own. Therefore I can't work. He's at college still, but full time is 2.5 days, spread over 5 days. So he's been at college for 2 hours today, day off tomorrow, 3 hours Wednesday, then all day Thursday and Friday. I couldn't get a job - I need to do those school runs, and I need all the holidays off. His days change every year, and actually this might be his final year at college, which means finding another placement for him, and then figuring out hours, etc. Plus he does other activities that I need to take him to.

It's been like this since he was a toddler, he's needed constant care. I have other kids, it's a huge huge difference, that people that aren't going through don't even imagine. They think it's just like what every parent does. It isn't, that's why our kids get DLA and PIP.

It's so normal to me as it's my every day life that sometimes I forget that other parents don't have to accompany their young adult everywhere they go.

For all this I get weekly Carer's Allowance of £81.90. It's counted as income so it gets taken off my Universal Credit, although there's then a Carers element added back on. But not exactly rolling in it!

So if you're moaning about your taxes paying for me not to work, figure out how much it would be if I sent him to live in supported living and how much of taxpayers money would go towards that (clue - it wouldn't be £81.90 a week)

I just don't believe for a moment given the facts the OP have stated that she is absolutely incapable of looking/getting for a job. She just doesn't WANT to. And that's fine, but don't state its near impossible when it isn't.

You don't need to believe it, it's absolutely naff all to do with you how OP spends her time, but like everything in life, it's not one or the other it's a combination of both and that is what OP has explained, I really hate it when people pick apart everything that OP says, just to partake in some sort of weird one upmanship.. "Well I can do it, so why can't OP?!"

She has said why she CAN'T get a regular job* (she would need a job with complete flexibility, to drop everything at a moments notice, where she can walk in and out to suit everything that her child needs during the days when he is not able to attend school, with limited hours to fit around their families schedule).. and she has explained why she WON'T (because child doesn't sleep through the night, and because she cares for him during the evenings, she has no choice but to use the daytime to do all housework, meal prep and catch up on sleep, and socialise like most people would do in the evenings). Both these things can be and are *true at the same time.

So the real question is, OP and her husband are happy with the arrangement, why are you so bothered by it?

This. With bells on. Unless you have experience of it, you’ve no idea how being a carer to a disabled person can leave you drained - physically and emotionally.

I remember a thread on here a few years ago about disabled toilets and baby changing/ family use. One poster said something like all toddlers and babies are disabled as they all need help and can't do for themselves (justifying using the facility). Some people will never understand and just can't see past their own existence.

So the real question is, OP and her husband are happy with the arrangement, why are you so bothered by it?

I honestly do not give a tiny rats ass (to quote friends)

But I whole heartly agree with you - the real question is if OP and her Husband are happy with the arrangement, why is it even a post on MN?

So if my DS in school for 2 hours a day, DH works long hours which can (but not always) include weekends where would all these posters who think all parents should work suggest I apply?
I mean if you can tell me a job I can do for 1.5 hours a day please do. It must also have complete flexibility for days when I have to take DS to hospital and various appointments or days when DS can't/won't attend school.
I'm sure there are loads of jobs I can do.
There are different levels of SEN, my DD2 is autistic but I could work full time. With DS I can't. If you have a child with SEN you can surely appreciate that some children need more support than others. So while it's possible for some parents with children who have SEN to work for others it's just not.

I agree. In the dim distant past, there was an option to institutionalise disabled children -parents could walk away from the ‘problem’. There is no such option available these days. That’s why the benefit system provides support - some people here would do well to remember that. So if we’re scrutinising the benefits payable to carers and also directly to disabled people themselves, you have to compare this to the astronomical cost to the tax payer of full time care. And also remember that a lot of these benefits are taxable and means tested. So the argument of ‘I’m paying your benefits out of my taxes’ doesn’t work because benefit claimants, in very many cases, are tax payers too.

Yes! How many parents of non-disabled children come home from the school run and need a good cry pretty much every day? This is a pretty standard thing, from the people I speak to, for those who have children in placements that aren’t meeting their needs. And the solution? Hours of fighting the LA/system via the means of paperwork, which is just what you want to be doing when you are emotionally drained.

You know what else, I'm getting the feeling that at least some of the get-a-job brigade are also either mugs or hypocrites when you scratch the surface. Because their outrage at anyone claiming benefits for any reason leads me to speculate that they would react in one of two ways if they were ever unable to work and thus in need of the benefits they were entitled to having paid into the system:

1. They'd refuse the benefits they are entitled to out of some misplaced sense of pride or 'shame' (mugs) or;
2. They'd claim them - quite rightly, except that their lambasting of other people for claiming what they were entitled to would render them hypocrites.

Just a thought.

It’s a post on MN because she was looking for advice on how to handle the pile on from her PiL. She didn’t post for a similar pile on from MN contributors - most of whom have hijacked the thread to focus on why she doesn’t work, when it’s perfectly bloody obvious.

Just a thought

But an excellent one !!

So you haven’t even read the OP carefully then?

She wanted support on how to deal with her ILs.

Instead you’ve made it a whole thing about how she choses to be on benefits etc….
And you’re telling us you dint have an agenda? 😂

Err, as she clearly said - because her in-laws are being dicks about it and she wanted support.

MN: by parents for parents - supposed to be supportive. You should give that a try.

HTH.

It’s interesting isn’t it ? Particularly because OP hasn’t mentioned being on any benefits other than her son qualifying for Child DLA.

Because she has judgmental in laws who, like you, won't seem to accept that OP can't and won't work while their family situation is so complicated.. and she's fed up to the back teeth of it

Exactly the reason she says in her post.

This is supposed to be a support forum, if all your going to do is come on here and tell her to 'get a job', when she has explained multiple time why she feels she can't and doesn't want to, and is nothing to do with OPs problematic in laws, it's not exactly supportive or helpful is it?

Let's put it this way, if OP was saying "my in laws keep calling me fat, and talking about how all fat people should lose weight and just be thin.. I am fat, but me and Dh are happy" Would you're advice on here be to tell her to lose weight? Or would you think her in laws were being arseholes?

The usual ignorance from the benefit bashing cunts.

Not sure at all where I've given anyone the impression I care that she's on benefits.

Benefits are there to help those who need it, which clearly given the OP's first post she certainly falls in that category. I, of course like many others, don't like the people who take the piss out of the system - but that isn't the case here.

The end of OP's post she says I know sil thinks I should be working (although how, I have no idea) - I have just been discussing the 'how' part.