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.

This. My dd is 18, I haven’t had a night away for years other than a night in hospital when grandparents had no choice but to step in. I get respite for 6 hours a week during school holidays but none during term time. I had to fight hard to keep dd in a full time placement. I have asked social services to look for residential placements but I’m told ‘there’s nothing suitable’. No one wants to help look after her…even more so now she’s older. I don’t get evenings out, I don’t have many friends, I’m constantly exhausted. I try and do what work I can which isn’t a lot. Chances are next year dd will be kicked out of her educational placement and will be home most of the time. She needs 24 hour supervision, isn’t very verbal, has no safety awareness and self harms, she doesn’t sleep well and is awake very early every day.

The paper work is tedious, I’m In a constant battle with the local council and now adult services, I often have to fight to get her what she needs which involves daily emails, phone calls, chasing people up, collecting evidence for tribunals, contacting placements, visiting placements. As soon as I secure her a placement I have to start the fight to keep it for the next year or find another placement. Then there are DLA/PIP forms, chasing up appointments for OT, so each and language, physio, EHCP meetings, requesting changes to EHCP, checking through the new EHCP and pulling them up on all the sh#t they said they were going to out in there and haven’t. it’s pretty constant on top of caring….personal care, promoting, cleaning up after a meltdown……I could go on….

https://www.birmingham.ac.uk/news/2024/more-than-40-of-parents-with-disabled-children-have-thought-about-suicide-study

I'll just leave this here.

Some comments on here are competitive and judgmental.
It is exhausting having a SEN child , they may have to be picked up from school on a regular basis for therapy appointments that aren’t covered by outreach services .
There are many other appointments and assessments, form filling , appointments with teaching staff .
Even some days getting them to school feels like a mornings work in itself 😔.
You could well experience periods of school refusal ..I could go on and on .
They may well not be able to get a place at an appropriate after school club or they may refuse to go .
And if you don’t have any support network life is even more difficult.
And all school holidays you have them full time which can be very difficult 😞

I know it’s easier said than done, but don’t let other people’s blinkered, uninformed and poorly considered judgement have an impact upon how you judge yourself.

You’re a family unit, working as a team, doing your best to support your son with his specific needs. What someone else thinks you should be doing is entirely their problem.

Also, taking the in-laws judgement out of it (and giving the benefit of the doubt), some people think saying stuff is actually helpful - like they’re giving you ‘food for thought’. Sometimes, taking the aggravation out of it and being more constructive/honest about what would help your family might at least get them to shut up, if not actually offer
more help.

When you’re able to access more time and headspace for work, you will. Best wishes.

Excellent post!

This !

Your comment is heart wrenching. I feel for you so much. The system stinks even worse that the NHS. Your days sound like being on one of those merry go rounds with ghastly tinny music. I am sure I'm not the only one who wishes they could help you.

Most of the time when my dc are at school I sleep ! I wouldn’t be able to work as well as care even though they have school as I don’t get enough sleep and without sleep you can’t function

Go NC. Don’t engage. Tell your OH that they aren’t welcome in your house.

Tell them you would love a little part time job and if they wouldn’t mind watching the children ……

Here have one of these @hellhavenofury35 🥇

Can I ask why you're not working if your DS is at school all day. There are plenty of jobs you can do at home during school hours or evening work when your husband is home to care for your DS. There are plenty of Mums who have caring responsibilities that work part time & there are jobs out there, if you're capable of working you should be working.

Dear goddess, please read the damn thread and exactly how much the OP’s child needs from her.

And then go in the corner and think about your life choices.

Dear Goddess 2. I only asked her why she didn't work while her child was at school. What is she doing for her Son when he's not with her? He doesn't need her 24/7 if he's at school being cared for there. ALL children need their parents so that's a pretty dumb thing to say! She could easily work 10am - 2pm if she's capable of working why isn't she. ALL Mums have responsibilities & a lot of Mums work full time, some even have second jobs, single Mums manage to work too with no help from others. I don't need to 'go in the corner & think about my life choices' I have worked ALL my adult life from 16 years old & quite happy that I made that choice. I've paid for everything for my children, never relied on benefits & I'm proud of that & the choices I've made for my family.

Do you have a disabled child?

No but I chose to work part time from home & care for a child with Autism so I do understand what it's like having a child with additional needs. However, while they're with me during the day her Mum works. ALL mums have a busy life & there children need them, it doesn't stop those Mums working.

Then you're lucky that you have a job where you can work from home. You must also have an understanding employer?

I'm actually self employed & chose a home based job so I could spend more time with my children & be there for them when they're not at school. Having a child with additional needs isn't an excuse to not work. I'm sorry but if your child is at school full time, that's at least 6 hours a day you could be working earning your own money. There are lots of jobs you can do part time during school hours. Envelope stuffing, leaflet drops, parcel delivery etc. If an adult is physically able to work then they should be working. What is this Mum doing for her child while he's at school? He doesn't need her during those hours so it's an excuse to not work.

Sorting out admin, medical appointments for the child / herself, catching up on sleep

It's great that it works for you but it doesn't work for everyone.

OP's son is on high rate DLA, meaning that if OP is on benefits, it would be the pittance that is carer's allowance (she had not said if she claims anything). No work commitments with CA, so the DWP have said she does not have to work.
She is doing nothing wrong, and no, she does not have to work.

That doesn't take up to 6 hours, 5 days a week. AND saying that, when do full time working Mums have the chance to arrange appointments, do family admin or catch up on sleep? I & many other working Mums have had to do it, it's all about being organised & I'm sure if her husband has cut his hours at work to help out then he'll be shouldering some of the responsibilities so she's not doing it all herself. Single working Mums don't have anyone to take some of the strain & yet don't use having children as an excuse not to work.

Exactly-the DWP understand and that’s why carers have no work requirement

That's another thread for me to start. I don't think parents should get carers allowance for looking after their own child. They should be doing it anyway. Yes pay a parent who is doing the job of a nurse, like if the child is severely disabled & needs lifting, clothing, washing etc, but not for a parent that does the same for their child as any other parent with a non SEN child does.

So this Mum is getting paid to care for her child, when he's at school being cared for by others for up to 6 hours each day for 5 days a week. What's the money being used for that any other Mum with a non SEN child isn't forking out for out of her wages? what are the extra costs?
If she has up to 6 hours each day 'free time' without her Son then she should be at least earning something herself.

You do not 'understand' how OP has to live. You are not that child's parent and responsible for him or her 24/7.

Is there any particular reason you're so worked up about another person's life that has nothing whatsoever to do with you? Because if you're really trying to imply OP has it too 'easy' in any sense of the word, then you're even more stupid than you're making yourself out to be on this thread.

Did you miss the part where the OPs DS is at school part time?