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.

To qualify for carers allowance you have to be caring for the person for a minimum of 35hrs per week. Her son is disabled, not an ordinary 10yr old, she's providing an additional 35hrs/wk care on top of what an ordinary 10yr old would need.

Getting disability benefits for children is hard, to qualify they must need significantly more care than any average child their age, even a difficult average one.

So that's two separate ways this family have passed the government tests of being eligible for disability related benefits.

Are you starting to understand just how difficult OPs life is, now?

If she works school hours (10am-2pm?) That's an additional 20hrs per week. So minimum 55hrs per week of work then.
Even if she's no longer eligible for carers allowance because she's working, that'll be because of her earnings, not because the caring responsibilities have actually stopped.

Carers allowance is like £70/wk or something by the way.
That's £2/hr and you're on-call 24/7, 365 days of the year.
There's no holiday pay, sick pay or pension.
You're not actually allowed to take holiday or be off sick from the job of carer. If you go on holiday you take the one you're caring for with you and keep doing your job. If you're ill you carry on the same at your job regardless of how you feel or of how it slows your recovery down.
It's a non-stop job without any official breaks no matter how long you've been working.
There's no overtime and you can't stop until the job is done, so if it takes you 60hrs one week to complete all the caring then your wage is effectively reduced to just over £1/hr. It might take you 60hrs every week, depending on the person you care for.

But obviously the OP is nothing but a scrounger who should go get a job and also do all the caring for free 🙄.

She describes her DS as a "10yr old toddler". You remember the 'terrible twos'? You remember taking a deep breath and telling yourself it's just a phase and it won't last, that things will get better? Now try to picture that in a 10yr old, 15yr old, 20yr old etc. Where it's not getting better.

People are tearing their hair out for TA funding for their DC and can't get it even though both parents and child's MH is on the floor and school attendance is pretty much zero. This child has funding for 1-2-1 support the entire time he's at school. That's how bad things are.

She also has two other non-disabled DC to look after.

But yeh she needs to stop sitting on her arse all day and go get a job, the workshy scrounger 🙄.

That's different though. Parents of babies and toddlers muddle through knowing/hoping there is a light at the end of the tunnel. Try doing the sleepless nights for decades.

Where is OP supposed to find a job where she's needed only a couple of hours a day, is flexible, has generous sick pay and parental leave entitlements while paying a living wage? In reality no such thing exists which is why she's entitled to benefits.

Good idea 👍

Your pils are obviously benefit bashers with zero empathy or compassion. They have no regard for you or your grandson, it is all about them and their beliefs. And how they think they are perceived others. I would kick them straight out of the house next time. Firstly make a list ruining through each task you fulfill every day while your dc is at school. This should wake them up a bit. Easy for them to criticise when they are in full health. Wait until one becomes the others' carer in the future.

Please don't describe those type of people as "boomers" because that's a grossly unfair generalisation.

I’d be saying. ‘We’ve had this conversation before, I’ve listened, but now I’m asking you to keep your nose out of my business and keep your unhelpful comments to yourselves’.

Different strokes for different folks. You sound amazing with what you can cope with. This mum sounds like she is struggling.

Best response.

When I was a child, almost 60 now, very few mothers worked and if they did it was very part time. When I had my DC part time work, maybe four days, 25-30 hours or so was considered to be more usual. Now everyone is obsessed that a woman should work irrespective of her personal circumstances.
Why can people not accept that everyone's situation differs.l?

People don't understand, they think you have 6 hours'free' a day. When reality is that's time to do housework (as there is no time in evenings and weekends) get some rest/downtime. Go into school/collect early if needed. Manage appointments, plan routines /activities. Basically do everything that needs to be done so evenings and weekends are fully committed to your dc and managing him.

All of those who have two half braincells to rub together and are insisting the op should work.......try having a really hard think and ask yourselves......when is the op meant to sleep ?

Op I had years of this. In fact my dd is 26 now and still doesn't sleep. The exhaustion is all consuming, and when she's here (( she's in residential care )) I still get only cat naps. I'm constantly listening out for the next wake up so only doze in between. She's home for two weeks over Christmas and I'm really worried about how I'm going to cope with work. (( I'm now able to have a bit of a life now I'm not on call 24 / 7 ))

Caring for dd has destroyed my sleeping pattern as it is, I never get a good sleep as I'm always on high alert. Unless someone has lived through that and the impact it has on day to day life and cognitive function they just don't get it.....well some do. The rest are just a bit thick and bleat on about carers daring to want a bit of sleep and prioritise they're own well being when they're already doing a full time job at home !

Oh ignore them. They clearly have no idea and don't feel pressured to go back to work because of twats like this.
Last year I was working full time with a child with SEN and it almost killed me (I'm being serious). I'm a SAHM, well carer, to DS. He's at mainstream school but only does 2 hours a day and I'm constantly exhausted, he's up for the day now.
My MIL keeps asking when I'm going back to work (because there are loads of 2 hour jobs about) and how lucky that DH can work full time and still be a carer (which he isn't) because if we both decided to sit at home all day we'd be in trouble.
I get how you feel. I don't like confrontation so I tend to nod, smile and totally ignore. Oh and MIL can't babysit because DS is too much work!

ITS NOT THAT SIMPLE,my situation is the same as OPs, my boy is 7 and has very high care needs, I'm a single mum no help, i don't have the time physically to work, my child has so many needs it's virtually impossible so instead of being judgemental don't comment.

Why do you seem to struggle so badly with empathy, insight and compassion?

My dm was guilted for choosing to work instead of being at home with her dc, like all the other mums on the street. I remember debates on the radio and one line of argument in particular, that women were entitled to choose to work if it made them happy. Of course the implication was that these selfish women were choosing to prioritise their happiness over their dc’s happiness. I even remember my childminder, asking me, in front of my dm, if I’d rather she worked or stayed home all day with me.

And now, roll forward the decades, and you’re getting judged for not working, for making family arrangements that prioritise your dc. I’m in a similar situation @elliejjtiny and in all honesty I grieve sometimes for the life I thought I’d have. There are so many things I wanted to achieve but I exist in a permanent state of exhausted tension, waiting for the next crisis. I feel I should be able to do more. And the judgements land in those vulnerable places.

We live in a capitalist paradigm wherein our value is determined by our output. The disabled and their carers are a drain, but because we’re also a post-Christian society, there’s residues of the older values still. People who aren’t very bright can’t detect the contradictions and mostly don’t understand that their views are social constructions, believing they are generated from within.

Ableism is everywhere. You should be able to work, and care for your dc. I can so you should. I can see, use your eyes blind person! I can hear, just try harder deaf person. An inability to picture an existence different to your own is also a disability so allowances need to be made. But don’t give these views the same credence that you would if they were based in genuine intelligent recognition of your circumstances. Ultimately we have to accept that giving up work, means giving up the respect of ignorant people.

Sorry OP, you seem to have attracted some pretty dim people to your post. Please ignore them. Their lack of insight or empathy is not your problem.

Don't ever feel you need to explain or apologise your set up. You're doing what needs to be done for your family. Speak to your partner about your in-laws, it's his job to manage them. Be clear and firm, that you would love to keep having a relationship with them, but your boundaries are clear and if they cannot keep their silly opinions to themselves they will no longer be welcome in your house and life. You've been very patient and gracious so far.

Where did it say he was working less hours?? I read that he could be more flexible with his hours.

Where did it say the family was short of money and needed people to work more hours?? Ahh - it didn't.

Yet you still want to pick apart the OP's life, instead of offering support.

caringcarer my arse - in the words of Jim Royle

No criticism here but I have an autistic child (8) and 2 other children including a 1 year old. Over the 8 years, I've had 3.5 not working due to maternity leave/ career break. Weirdly, every time I find "working" the easier option. I get a cleaner with the extra money and feel like I get "me" time and something else to focus on, rather than the kids. Sen is all-consuming. I just wanted to put this out there that you might find working easier, than not working.

I felt guilty about feeling like working was easier once and confided in 2 besties that also didn't work. They both tried working after I said this and both have thanked me and said they are far happier (to put their situations in context, both had extremely high-earning husbands).

I understand OP. My son, bright and high functioning is autistic and has a terribly poor immune system, he was off so much in primary school that it felt futile getting a job at all. Not only that but night times being what they are, you end up managing dinner bath bed homework stage by stage and each has its own challenges, for many years there was no way I could do housework when he was at home. Many people don’t understand this. if you have a child who is scared of noise, has separation anxiety and tantrums and struggles to eat sleep or poo you end up with a very stressful life. My son comes home from school
completely exhausted and it’s only now at age 12 he can ever do any after school club, he’s always had to go straight home. Another reason why it’s really hard to work.

I would like to say though that my boy is much better since reaching end of prep and I am able to look for work now - fingers crossed for you that it won’t always be this hard. Nobody told me that his issues might ease as he grows and it’s been a huge relief although I’m now braced for the teen years.

Is your employer okay with all the time you have to take off to take your child to appointments, and for your ongoing meetings with school and local authority ?

The other day my daughter’s school closed due to the snow - it was announced on the local Facebook group. One women kept on and on about how the children there are all snowflakes and how are they going to cope when they grow up. I gently explained to the woman that many of the children are in wheelchairs/on oxygen/have a tracheostomy and many of them won’t grow up and her reply, with no hint of irony, was “it’s no excuse, I’m old school.” Yes some people really are that thick.

I am a full time carer to my daughter. I have also worked since I was 16 including a 10 year stint as a teacher. I stopped working 2 years ago as it was killing me. It would be impossible to work whilst she is at school. I wouldn’t even bother explaining yourself. Those who clearly understand already get it and those that can’t muster up an ounce of empathy have bigger problems. We might have been dealt grossly unfair hands with our children, but at least we’re not dicks.

Your post is odd.

@elliejjtiny

I think you just repeating the line : if I go back to work, will you provide childcare?
If not why not?
Who will provide that childcare, and will it meet DC’s needs?
I’m in a similar situation and work in a lunchtime role in a school. I am
earning just below the threshold - so I also get a carer’s allowance, It’s all within my DC’s school hours, and I’m off when DC is on holiday.

You are not just a parent, you are also a carer. This is your job. If you aren’t providing that care, then you would need to pay someone to provide that care. So by default, this is your job.