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. It’s not just about how far you can walk. Safety aspects and the manner in which the distance is walked is also taken into account, as is the amount of help and supervision from another person.

Oh yes because they have admin to do, forms to fill in & appointments to go to. Unlike us full time working Mums who have ALL THE TIME IN THE WORLD to complete these kind of tasks.

Those who have kindly explained their situations have made me see that not all SEN parents can work because of very valid reasons. That doesn't mean everyone one with a SEN child CAN'T work. Some choose not too. which is the whole point of my thread in the first instance. I asked the OP why she wasn't working. It may be her choice or it may be she can't. That's what I was trying to establish as if she can work, why isn't she.

Good point. She did.

That question has been answered multiple times and at length in this thread, as you well know.

Why are you persisting with this. All of these questions have been asked and answered, and you’ve actually acknowledged that in a couple of previous posts. You’ve successfully hijacked the thread for your own purposes. I’m reporting you as a troll.

Listen if you’re short on time, you need a more flexible employer, or to take some time off. Which really, is a you problem.

Being jealous of the disabled, and their parents, is a weird look.

Or, even worse, is an assessor for Capita !!

I've acknowledged that it must be difficult & hard for SEN parents, & I understand why some parents can't work. That can't apply to all SEN parents though & it's those parents who choose not to work that annoy me & expect others to support their child when they're capable of providing for them themselves.

When does an exhausted Mum working full time get time to wind down with young children who need constant supervising?

How many appointments do your kids have a year? How many forms do you have to fill in? Have you ever filled in a DLA form?

It's just not on the same scale. You seem to think it's just popping to the dentist a few times a year and filling in the forms the school sends about trips and the usual child admin.

Parents with kids with SEN have to do all that AS WELL as multiple other appointments a week/month and LOTS of form filling for various benefits, medical reasons etc. And they generally can't do it while their kids are at home or awake because you can't concentrate on a complicated form and supervise your high needs child simultaneously. I really don't understand how you're not understanding this.

I do not envy a parent with a disabled child, so me looking weird is in your head.

I fully get that it's difficult for them & they have many things going on that a non SEN parent hasn't got to face & that it is impossible for some not to be able to work. However, the whole point of my post was that if the OP is sick of being criticised & can work but choses not to, why?

So the issue is with her not the people who are too short sighted to see the situation for what it is? The answer to judgemental people is for the person being judged to change?

Just wait a moment while I get my tiny violin. Parenthood is often exhausting, but you chose to become a mum and, judging by your posts on here, your DC don't/doesn't have additional needs. So if you're exhausted, think about how much more exhausted parents of kids with SEN must get.

I am understanding it, but this doesn't apply to all SEN parents & some that aren't working are choosing not to because they don't want to. A lot of people don't want to work for various reason but have to so why do they get to choose?

She’s not understanding it because she doesn’t want to. Doesn’t suit her narrative.

But you're only accepting the explanations you choose to accept.

One of those gave you some of the details of some of the paperwork and admin SEN parents have to do. You seemed to accept that. But then you dismiss what other people are saying as "forms to fill in" like "all mums have to" - and that's not good enough? We're talking about the same things - that poster has just gone into more detail.

You likely have many more options for other people to look after your child when they are a neurotypical toddler with no disabilities, than an SEN parent does. Paid childcare, relatives. Sure not everyone has this - but it's much more likely you'll have someone when the child doesn't have high needs.

And also - it's clear you don't have toddlers any more - yours are older. It's a very time limited thing. But it's not time limited for SEN parents. It's relentless.

Dressed him
Dealt with the inevitable meltdown because his school shirt feels scratchy
Taken him into the school playground
Stopped him from knocking on the classroom Windows
Waited until the teacher opens the door and hand him over to the teacher. I am the only parent in the year 6 class who has to do this. There is one other child whose parent drops her off in the playground, she has SEN as well. The others walk from home on their own.
In an average week he has 3-4 appointments, lasting between 30 minutes and 4 hours
Form filling in (1 hour a day minimum)
Homework, my older ones were doing it with minimum supervision at that age, ds can't.
Wiping him after he has been to the toilet
He doesn't understand the difference between tv and reality and will often say that something has happened to him when he saw it on the tv etc so we have to be really careful what he watches and watch the programme with him. Same with the computer.
Make sure he isn't putting bits of Lego etc in his mouth.
Try and stop him from making loud noises when ds1 is on nights and trying to sleep.
Doing a dancing class on YouTube with him because he loves to do dancing but he can't access a dance class, even if I stay with him.

Chase up his prescription and 2 appointments gv
That's probably about half of what I do for him in the average day.

Then there are the things where we do the more time consuming version because it saves money. E.g. our dentist is 45 minute drive away but it was the closest nhs dentist. Someone who has a lot of money could just pay to go private.

Oh dear god. If the DWP establishes big enough care rates to need a full time carer working at least 35 hours per week then that person already works full time - just at very low pay and with no holiday or pension rights. They are not unemployed.

They are not choosing not to work. Because of lack of support and choice they are already working but low paid etc.

You are really asking whether they should prove their worth as citizens by taking a second job on top of their primary job. But where income is also capped.

If they can afford not to work, then fair play to them. I bet most people would not work at all if they had a good income from elsewhere. It means they can focus on their child, and importantly, focus on themselves.

Carer' allowance is £81.90 per week. That is meant to replace a full time wage. If you think anyone is actually choosing that over working, when they have the spoons to do so, then you are seriously deluded.

All parents who receive carers allowance will have had to fill in DLA forms for their child.

Those children will all have more than the usual medical appointments because by definition they are disabled with care needs.

So how does it not apply to all SEN parents who receive carers allowance?

If a family can afford for a parent to stay at home that is up to them to do what is best. If that family rely on benefits they will have to work within the realms of the expectations of the UC.

If a child has a severe enough disability to get DLA (I think it’s only mid and higher care that count but I’m not sure) then one parent won’t have a work expectation - that is because the state accept that having a child with that level of need is often not compatible with work.

for some families even with a child with high levels of needs they find ways to make working work. Good for them, that doesn’t mean those who can’t make it work are wrong.

They get to choose because their lives are extremely difficult and the DWP recognise that those receiving middle or high rate care DLA for their child need the safety net of a carers label and the associated carers allowance / no work requirements . Of course there will be some parents who have a disabled child and choose to work but it is down to the individual and in most cases it’s just too difficult. Nobody needs to justify themselves as the DWP have set a threshold for not working if you have a disabled child .

They don’t get to choose - the notion that they do is something you’ve made up to try to support your untenable views. The benefits system determines who can be excused job search activities, and if you have a child who is in receipt of DLA and you are a carer for that child, there is no requirement to look for work. DWP recognise that those children whose needs are high enough to qualify for DLA (as previously stated about a dozen times now, a very difficult benefit for which to qualify) have very high care needs, which are not compatible with work or looking for work. Thankfully reasonable people are in control of this, who are in receipt of all the facts, and who are medically qualified to make these decisions. I’m sure that if you have some qualification in this respect that you haven’t declared, we’d all be delighted to hear about it.

That's a very strong accusation of me being a troll spouting venom, which in this case is incorrect! and just so you know I'd have this conversation with anyone face to face, I don't need to hide behind a keyboard. Not agreeing with people not working when they are able to isn't trolling. If there weren't so many snowflakes, & people weren't frightened to voice their opinions on controversial subjects our country might not be on its knees & financially crippled.

I'm an SEN mum. DS1 is 24. Do you think there may be a difference between what an SEN mum and a non SEN mum might do for their adult child? SEND is for life.