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.

I find the idea that something is technically possible or logical a bit perculiar really.

People aren't robots, I could technically do all sorts of things that in reality I simply can't cope with.

It also doesn't make doing it sensible, practical, sustainable, helpful.

Something being logically possible also doesn't make it morally desirable.

Just ignore them OP. Or say something like “funny, I always find benefit bashers are often those who benefitted from great pensions, cheap housing in the 80s etc”

What's really jumping out at me from the various absurd 'you could get a job OP, you just don't want to' posts is that some people clearly do not regard complex care of a SEN child as work. They've either got no experience of doing so themselves, or else they have and just because they are making it work, in their minds that means there's no 'excuse'(!) for other people having different requirements or making different decisions.

Heck, I've no experience of this myself but I'm still capable of grasping that it is work, and very hard and demanding work at that. I'd have thought anyone could grasp that. But no, we always have to have this bitter little cohort of naysayers popping up on threads like this to bleat their predictable get-a-job mantra. It must be a very narrow little existence going through life with so little insight or ability to understand lives that are different from their own.

It's almost 2025. Why are some women still insisting that no work a woman does is 'real' work unless it is paid? It's incredibly depressing.

I think you’ve never had to fill any of those forms or have a child with complex medical needs.

That’s untrue, in my case.

I do consider it work, hard work at that. I in essence have two jobs, one of which includes a multitude of things that others have listed as the responsibilities of SEN parenting.

I personally want a life outside of parenting, and would never be able to be a SAH anything. I like and value my identity outside of it, perhaps too much.

I don’t look down on people who make a different choice in similar circumstances, I just see it as a definite choice, in the same way I’ve made my choice.

@FestiveFruitloop i think it’s simply because housework and childcare is NEVER seen as work. Unless you are a nursery worker or a CM.

To put it simply, if it’s not paid, it’s not worthy.

And yet you still have women who are telling the OP she ought to make it work.
I suspect there is some jealousy there. They see someone who has the whole day all for themselves when they are struggling to make it work (in big part because their partners aren’t helping in the first place). So if they are struggling and pushing through to make it work, why doesn’t the OP?

It’s not different too to the myth of the good disabled. The one who works, still does so many things ‘but differently’ etc… so much so that the many disabled people who can’t work, can’t get out of the house etc… should be ‘written off’ (that’s Labour latest way to address disabled people who don’t work btw)
Similarly, if you’re a ‘good carer’ you ought to still work full time and run yourself to the ground.

@SleeplessInWherever not everyone can ‘work two jobs’ and have sleepless nights for years on end.
Most people burn out and end up ill.

Its fantastic that you haven’t and have managed to cope with it.
And yes deciding to put your own health first is a choice.
But what is wrong is to put a value judgement on the choice that has been made. And too many posters on this thread are.

Fair comments, although I do feel that without knowing about 'intangibles' such as OP's health, energy levels, sleep quality, other family commitments etc, it's harder for us as internet strangers to say whether she has a choice whether to work outside the home - we're not in a position to know whether or not she would have the bandwidth, so to speak.

One of the main issues if you are in the OPs situation is childcare. When they are in primary school, assuming that they are "well behaved" if they can manage in a mainstream holiday or after-school club environment with a bit of extra help, then you are fine. Once they hit secondary age there is nothing. The only way round this is to find and employ specialist PAs yourself or a nanny. Both are complicated to do and prohibitively expensive in a lot of cases.
For example my son requires two adults when out of the house. To even at minimum wage we would be looking at £24 an hour ish. And that is for someone with no qualifications or experience who you would be leaving in charge of a complex teenager with behavioural difficulties.
We could probably patch something together for most of the year but the summer holidays is horrendous. I would have to find two people who had experience working with complex people with disabilities and who wanted to to work full time hours in the school holidays but who presumably had another job in term time? Uni students are useful but again have no experience.

Unless I had an extremely well paid job, or was independently wealthy, I wouldn't be able to afford care during school holidays. So summer holiday working is totally off the cards for many parents with send kids.

The child requires constant supervision wherever they are. For the majority of the time that’s with the OP, and this significantly reduces her ability to do other things like shop, clean, cook and sleep. The time the child is at school is the OP’s time to do these things.

The OP's child has been assessed as having higher care needs than the average 10 year old. That's why the OP is eligible for carers allowance.

So no, obviously the OP cannot just do those things in the same way you do with your children "like everyone else does" BECAUSE HER CHILD NEEDS MORE SUPERVISION THAN YOURS DOES.

Can't tell if you're goady or just a bit dim.

Yeah, that’s fair.

As I’ve said, I don’t value either decision more than any other. Whatever works best for your own family and circumstances.

It’s weirdly better for my own ability to cope to have a separate life outside of the craziness that is our home, but I don’t expect everyone to subscribe to that idea or be able to live that way.

RTT. He hasn’t cut his hours, he’s switched to freelance and is still working full time, but it allows him to contribute to care when needed.

What do you do for work? How many hours? Full-time, so about 40?

I can't see a valid reason you can't go and get another job on top of that to be honest? I don't think you're contributing enough to your household doing that full-time role, you could be earning more.

"But aren't all parents fulfilling a 130 hours a week role?"

Do you understand why OP gets carer's allowance? She is explicitly not fulfilling the same role as "all parents". That is really clear in the definitions for disability benefits and carer's allowance for children - that they need MORE CARE than the average child of their age.

One of her children qualifies for the enhanced rate of child DLA. To qualify OP has to show a medical assessor that her child requires very significantly increased care needs over and above what a non disabled child of that age would need. If she were claiming UC, she would not be required to look for work. So what we’re actually saying here is that MN judge the OP a lot more harshly than DWP. Not really something to be proud of is it ?

You’re wasting your breath. This is slowly descending into a benefit bashing thread with a splash of ableism for flavour. Unless people have direct experience of caring for someone with a severe disability they have no idea what they’re talking about. Doesn’t stop them judging though.

Not dim, thanks.

Just trying to figure out what her partner is constantly doing that OP (not stated by OP, but insinuated by a lot of peoples posts) a full time carer with no time for anything.

What we do know is;

• DS is in school 5 days a week.
• DH is self employed and can work flexibly to suit the family needs.
• Older DC are in work/college and appear to be self sufficient.

Older DC are now almost 20 - assumingly they can start chipping in with cleaning to take the load of OP.
DH works flexibly, so 4 hours twice a week can't be ear marked for OP to go to work whilst DC is in school. DH on hand for emergencies those hours.

That leaves the OP approx. a minimum of 22 hours without DC (which is actually more than I get a week) to do a food shop, fill in forms (that appear to be a pile the size of all the Harry potter books combined) and do other essentials such as prep dinner etc.

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.

Why doesn't everybody get a second job and work 100 hours a week then?

You wouldn't think that was reasonable, so why do you think it's reasonable when OP is a full time carer to her DC?

And seriously, stop comparing time looking after your own children to time looking after a child with high care needs. It's totally not the same thing and it makes you look really thick.

Your right, I could absolutely go out and earn more.

But I don't want to, or need to. And I haven't come on MN to complain people are judging me for not getting a second full time job despite the fact I actually could - if I wanted to.

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. I'm just trying to decipher, given the facts from the OP, why isn't it possible.

Isn't that the point of MN, to have a discussion about these issues - else why else are we all on here?

You conveniently forgot that op is looking after this child throughout the night. So she’s hardly going to be a reliable employee if she’s regularly having sleepless nights. Not to mention the frequent medical appointments - what employer is going to hire her knowing she’ll almost certainly be unreliable from the start ?

Okay, so he can reduce his hours more to enable OP to find a job and DH be at hand.

He could use this time to help form filling, food shopping etc whilst giving OP time to be something else other than an full time carer?

I am genuinely not trying to be argumentative, I can't be the ONLY one reading this that things there is a solution to every issue that has been raised.

Again it comes down to if the OP WANTS to.

I don’t think she came on to complain - more to get perspective from MN contributors. Which she got. With many posters forgetting that she has a child with a high level of need in the stampede to tell her she should damn well go out and find a job.

Yes, because people wouldn't judge you for not getting a second full time job, because it's so clearly unreasonable as an expectation.

Fine when the first job is being a carer 130+ hours a week though, no problem at all judging OP for not having a paid job then.

You try working that many hours and then come and back and tell us what you think is "possible".

So now you want DH to drop say 8 hours so the OP can go and get an 8 hour a week job?

What the fuck would be the point of that?