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.

Exactly this… Fifty years ago mother's were judged FOR working now it's the other way round. oh the irony. Oh how it always benefits men and not women and often not children.

I would cost out the care you provide your child in terms of the cost to buy it in.
Then you can point out that at #£x/hour cost to the social care budget you are SAVING the council ££ (difference between # and the amount you get in benefits.)
Every time he says something.

He did this because their DS (10-year-old) has high needs and OP has to spend all her time looking after him. DS is at school. School is only 8.00 to c. 3.00, and he is at home during the holidays. There are two older children, one working, one at college (RTT), who at the very least need cooking for, washing for (well, the one at college, anyway) and to get support and attention from OP. DS 10 wakes in night - not a baby who can be given a drink and put down again, a child with specific needs, so OP gets little sleep. For DH to be a bit flexible means that appointments, disrupted nights etc. don't tip the entire household into chaos. For some reason I cannot fathom OP's DH could not get leave at previous job when DS was in intensive care (pretty useless employer!), so that's another reason.
Also, OP has useless PiL, who don't help at all, just criticise.

Agree. Latchkey children were considered a problem. Now mothers who stay at home are 'economically inactive' (huh!) and this is all to the benefit of men. Feminism was/is about choice, but misogyny took that desire and twisted it so that now women with children under five are designated unemployed. Oh, brave new world!

To be fair I think there is and has always been more of an expectation on men to work than women. So they are not immune from judgement.

I’ll be honest & say I have judged women who don’t work. In my head of course! I’m unsure where that judgement comes from tbh.

@Grammarnut but it's the same for working mothers. No disrespect to OP at all but whilst women are taking a back seat by picking all the caring responsibilities at the expense of their career, whilst their male partner's career accelerates, we will never get equal pay. If I, as a single parent of two, has to compete against a man who has a wife at home to go to all the appointments then what hope do I have?
Both women in the situation miss out.
If OP did not give up work, if her husband asked for more flexibility at work, if they both did 50/50 of everything in the house, if the DH did half of all the wake up calls, then things would get better for everyone.
I wouldn't have to feel like I wasn't 'showing commitment' by asking for half an hour off to attend a medical appointment or go speak to school or attend an EHCP review. I wouldn't have to compete against Dave who also has an autistic child but has a wife to do all that malarkey.
I do not want women to be forced out of the jobs market to be carers. I want employers to be made to be flexible and for the government to increase Sen wrap around, for both mums and dads. But whilst we keep rolling over and saying 'I can't work' nothing gets better and no women can advance.

Did you miss that the OP’s DC requires constant supervision, and frequent appointments? Not many employers are willing to be flexible around constant absences.

How can they require constant supervision is they are at school/college/work?

You're assuming that the OP had a career, and not just a generic "job". Not everyone wants, or is able to spend their life climbing the ladder.

OP has a much younger son who is at school. High SEN needs mean that he may not be in school full time, he may have 1:1 support and OP needs to be available during school hours as it sounds like there are frequent problems. She also cares for him after school and through the night, which can be exhausting. Also worth noting that he’s in receipt of the highest award of child DLA, which is very difficult to secure, so this should give posters an indication of the severity of his condition. Also worth noting that if UC claimants have a child on enhanced rate DLA, they are not expected to engage with work related activity, as DWP recognise that there are signifcant care issues.

There are 168 hours in a week. School is 35 of them. Who do you think looks after the child for the rest of the time?

@Windsweptandweird OP also had five children. We all have to take responsibility for the choices we've made in life. If she can't work then that's fine, but it's disingenuous to suggest that her child's disabilities are the only reason why she can't work. If you had five children, weren't working and were a single parent people would judge you very harshly, so OP should be grateful that she has a husband. Most people strangely don't judge married people who choose not to work.

Right - so there is a maximum of 35 hours that could be worked?

I don't care what the OP does, but I'm saying logistically - she could work a part time job. It's not impossible, it is possible - she is choosing not too. (Which again, is her prerogative and i don't care either way)

But I think saying that she 'Cant' - is a lie. She can, she could, she doesn't want to. And some people don't like that, E.G Her in laws.

Whilst the chikd may not need supervision during school hours - this may be the only safe time op has to sit and do paperwork relating to the child, prep food the chikd will eat and clean things the child has made dirty and pick up medications. So they can actually still be doing 'care' remotely for much of the time. The paperwork is unbelievable at some stages. Plus appointment ferrying is normally in these hours.

My dh and I tag team our child so we can work. But at one stage the idea I could put in a wash load and hang it out whikst be responsible for him was unimaginable.

My other child I could do all sorts of things whilst he was pottering about.

Okay - but are those not things that virtually every other parent has to do for their children?

My children need to eat, need food preparing, requires tidying up after etc. I still work and do those things after/before work like everyone else does?

As previous said, I don't care what OP does, but I am yet to find a strong enough argument that backs up the OP saying she 'Can't' work.

I think it’s unclear whether she can or can’t. If her child is so high needs that he needs her full attention when he is a home that she can’t.

She needs to do life admin, clean, food shop etc. There’s also years of sleep deprivation to take into account.

So she gets a job in a shop etc that doesn’t involve huge concentration so sleep deprivation might be ok, but then her son needs to be taken to an appointment. You obviously need to be physically present to work in a shop so she can’t take him, then can her husband.

She needs to do life admin, clean, food shop etc. There’s also years of sleep deprivation to take into account.

But again, are these not things that every parent has to do? These are all things I have to do (including sleep deprivation with a toddler who does not sleep well) and still work 24 hours per week.
OP has a partner that has flexible hours. So partner could stop working for an hour after school hours to look after DS whilst an online food shop is ordered, or dinner prepared?
OP's older children don't need constant supervision so essentially there is 4 adults in the house (I assume probably not at the same time) with 10 year old DS.

No because I can do those things whilst supervising my other child or when he is asleep. My other child can even help. I dont have any paperwork for my other child, nor does he have multiple appointments each week. My non disabled chikd has one tiny a4 folder with his papers in, my disabled child has 6 concertina files rammed.

If I want to prep food for my non disabled child, I can shove him in front of the TV, keep half an eye on him, chatter about his day and ask him to get carrots.

I can't do this with my disabled child.

My non disabled bedtime is easy- 30-45 mins max. Then I have energy left to do other things.

My disabled childs bedtime takes hours, with physio etc. I can't just read a story then pop downstairs and wipe down the surfaces.

Being a carer is nothing like looking after a typically developing child.

You're living in cloud cuckoo land. That's 35 hours when she isn't on duty. (Unless theres a sould destroying form to fill, a meeting to attend, or an appointment. Or her child can't attend school for any of a hundred reasons. Her child doesn't sleep, and needs constant care. So she's on duty 130 odd hours of the week. You've got some seriously skewed idea of what a life is.

Looking after some Sen children is like having a toddler until they are fully grown in some cases, mine gets high physical care, requires supervision in the house. Doesn’t sleep has meltdowns etc and I have another child at home. And work, and household admin, etc etc and I’m on my own. So think of toddler sleep deprivation till they are 13…14…15
changing beds, pads washing them doing personal care etc etc battling school, hospital appointments, I have to move about my own work clinics to accommodate his stuff at times. It’s exhausting. I admire those who can do it and work full time, I work 3 days and it’s a struggle.

You've got some seriously skewed idea of what a life is.

Disagree - I'm just being logical.
There will not be a form that needs to be filled daily that takes hours.
There does not appear to be a medical appointment every single day the child needs to attend.
Her child may not be able to attend school some days (given this may be more than an NT child) but other parents need to mitigate this too.

Out of the 35 hours the OP is not looking after her DC - your telling me there is no physical way the OP could not get a small part time job working 4 hours a day twice a week for example?

Perhaps the PIL are unhappy with the arrangement because their Son is contributing financially to the household in his entirety whilst it would appear the OP COULD get a small part time job to boost the pot.

But it doesn't seem she WANTS to - which is fine. But obviously PIL & SIL do not like that.

It's disingenuous to equate being the parent of a disabled child with a single mother. You have no idea what the OPs life is like.

Not for a ten year old, no. My youngest child is 4. I can put my head on my pillow at night and be fairly sure I won’t be woken up. The toddler & baby years are intense but short. A decade a sleep deprivation is different.

Should people have to push themselves to the brink to justify benefits?

So you're saying that someone who already fulfills a role for 130 hours a week, needs to take on extra? Good for you.

Yes but by your logic noone should ever say they can't work two full time jobs, because there is enough hours to do so. It's just most of are are chosing to only work 40 hours of our week.