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 don't want 'a bloody' medal nor do I want others paying out of their hard earned cash to support me when I'm capable of providing for myself & my family. Thank you for the offer though 😘

Parents don’t get carers allowance for looking after their own child. They get it for looking after a child who is disabled enough to qualify for child DLA, which is one of the hardest benefits to claim. It’s awarded in recognition of the fact that caring for a child with a disability goes way beyond what is needed for a child without. And if you bothered to read other comments you would see that a lot of child DLA is spent on specialist reports to try to get the child what they need. It’s also spent on things like transport - mobility component is awarded when there is a safety issue around this. The assessment is thorough and the award made based on what the assessor thinks the level of extra cost will be. Who exactly are you to question that ? You seem to approve of others being paid to look after disabled children but not the parents themselves. Carers allowances is a pittance, means tested and subject to earnings thresholds. DLA is only a contribution towards sometimes astronomical extra costs. Unless you are a parent of a disabled child, you’re really not qualified to comment on these things.

Assuming that’s aimed at me.

Nobody is making you work with your health conditions, or your caring responsibilities. Nobody makes me work with a disabled child at home either, and I don’t expect a round of applause or a medal for doing so.

On some of your other points - the admin isn’t the same, the level of energy required isn’t the same, the circumstances… not the same.

OP has not confirmed either way whether she gets benefits or not.... but if she gets CA, then that is about £82 per week. Her food bill for her family will come to more than that! And if she is on CA, then she has no work commitments from the DWP. So if the people handing out benefits are saying she does not need to work (in recognition that she has a child on high rate DLA) then people on MN saying she does need to work are talking out of their arse.

OP has actually said she wants to work at some point, but the time her child is at school she is catching up on sleep, life admin, oh and looking after her other DC too.

Surely though you can see that each individual’s situation will be different ? You may be able to manage your specific circumstances but that’s just you. You have no right to judge the actions and circumstances of others .

No thank you. I wouldn't have 6 hours, 5 days a week to complete the form as I'd be working. AND I def wouldn't want to waste anymore tax payer money on a statue. But nice of you to think I'm worthy of one. 😘

This. All day long.

This is possibly the most ignorant and utterly pathetic comment on the thread. You have no idea what you’re talking about, no experience of your own disabled child, but you are making offensive comments to those who do, and who have clearly explained their experience. Did you just come on this thread for an argument - because that ‘s the way it seems. You have nothing of value to contribute.

What would be a drain on society would be if parents of SEN dc decided they were too exhausted/burnt out/unwell to continue caring for their high needs dc. Then social services would have to meet their needs and do you realise how much that would cost. Here’s a hint - more than £83 a week !

I’m not sure if this is an alien idea to you, but people need sleep. You know, humans, need to sleep.

If someone has been awake all night basically doing a night shift, once/around the admin and housework that needs to happen… they go to bed.

Unless they’re not allowed to do that either!

No one has answered my question about why this Mum can't work while her child is at school. Like most other Mums, we all have other things we could be doing, family admin, form filling, appointments etc but we do it anyway without having up to 6 hours free time 5 days a week!

O don’t know why this mum doesn’t work but I have two children with complex needs who are at school. My days are full, getting them up and out to school is a mission some days. They both need prompted all the way through the morning routine - walking a 13 year old through her morning to get dressed, brush her teeth, find her school bag etc isn’t most parents morning experience. Neither is heading off a meltdown because something has changed in that routine, or in her school day, or her uniform. Both kids need constant reassurance, think toddler level engagement.

My DD at one point had 7 different specialists involved in her care, across 4 hospitals and 3 different health boards - coordinating that was a full time job alone. She has weekly and fortnightly health appointments as routine, again at different hospitals so can’t both be done in one go. I can find myself with one or other child at home unexpectedly because they’re not coping for whatever reason.

Add in routine night wakings - ie midnight, 2am, 3.30am and up at 6 which was last nights offering - and it becomes almost impossible to keep all the plates spinning.

Add in various professionals meetings, random illness and liaising with school and it becomes very difficult to find an employer that offers the degree of flexibility you need to accommodate all that you need to.

i am able to work, but that’s because pre-kids I had a well established career with an in demand specialism and a reputation that makes me very employable. My employer is very very flexible and knows I get the work done - sometimes over night when I’m sitting up with one of the kids. Many parents of disabled kids don’t have that option.

It’s great you have such strong views about what parent carers should or shouldn’t be doing or what support they should be getting. It’s easy when you don’t have to do it.

I didn't come on for an argument. I asked a question & had a lot of responses but no real answers as to why the Mum can't work. Yes there's been a lot of excuses but my point is Working Mums with non SEN children who's children are at school & they are at work don't have any extra time/ financial help. If your child has Additional needs that require a parent to care or them 24/7 then I'm all for them being paid for doing so as it's a full time job. However, while their child is at school, money is being spent on 1-1 care, extra assistance etc, carers looking after the child, my question was why can't the Mum work while her child is being cared for for up to 6 hours each day, putting something back in to the system to help cover costs incurred for the extra support her child needs from others outside the family.
She also mentioned that her husband cut his working hours, losing some income to help with the care of their child. Was it because they can claim enough to cover the drop in income?

She is working

Would you seriously be up most of the night and then go to work for another 6-8 hours? And sleep when?

I returned to work full time when my child was only 14 weeks old as the Maternity leave was only 16 weeks back then. They weren't sleeping through the night until they were a year old. When did I have the chance to catch up on sleep. All excuses not to work.

We’ve told you, but it doesn’t fit your “scrounger” narrative.

The child may not always attend school full time, so those 6hrs are fictional. She’s a full time carer when he’s at home, so other things need to happen when he isn’t. She deserves rest when it’s available, like everyone.

Working mums without SEN children, don’t have SEN children and the pressures that come with that. This isn’t a pity party, but we are not the same, and thinking that we are is actual idiocy.

You have had plenty of answers. You just don't agree with them and think they are excuses.

Carers save the country a fortune. OP could chuck her DS in full time residential care, but that would be costing a lot more than CA (if she gets it). OP is putting plenty "into the system" with her own efforts.

I DID 12 hour shifts when my child was only 14 weeks & not sleeping through the night until they were a year old. I had to as I wasn't in a financial position not to return to work after my maternity leave.

14 weeks ?

did you have a c section ? If so then you could have gone back at 6 weeks surely if not then it could have been sooner ? I know some women who started work again straight after their hospital discharge .

@Goodtogossip have you ever heard the phrase don't pour from an empty cup?

I bet you get to replenish your cup at least once a day. I bet more often than not you sleep through the night. I bet you get to have a shower without worrying of the dangers of leaving a child unsupervised for 5 minutes.

Our cups have holes in them.

We're lucky to get 4 hours of broken sleep or more than a 45min-1hr stint at a time. For years.

My doctor has serious concerns that I might develop psychosis because of the hallucinations I have. Things like wood grain warping, the floor feeling like I'm on a ferry on rough season, hearing people shouting my name or hearing crying whenever there's white noise like the shower running or the kettle boiling. They also feel like medication would be detrimental due to the side effects that can be sedating, when I need to be alert all of the time, or enhanced feelings of suicidal ideation because it must be at least a weekly thought that I'd do anything to end the suffering of feeling so tired all of the time. Can't have caffeine because I've damaged my bladder from withholding which happens when DS is too dysregulated for hours and I can't leave his side not even to wee, and caffeine stimulates my bladder so I wet myself so I can't even have that to perk me up a bit. I'm so sluggish, but I've got to stay alert.

Caring for a disabled child has given me disabilities.

I've recently been diagnosed with PTSD, because I am in constant stress. I have depression and anxiety.

My son is technically at school full time, but since the start of term I can count on one hand how many times we've made it there on time, meanwhile for the second time the LA have declined a specialist provision placement. They've not even increased funding for him at the school he's currently in. He hates it. It fills him with dread. He's made no academic progress. He is othered by the children there who don't know how to interact with him because he is different. He's lonely.

No wrap around care wants him. No school holiday clubs can accomodate him. He couldn't cope with them any way as they're too unfamiliar and would cause him to have meltdowns when things changed.

I'd say he spends anywhere from 3 to 4 and a half hours at school every day. In that time, I eat, I sleep, I shower.

I've tried to ask employers to be flexible and I've said I promise I'll work the rest of my shift back when he's asleep, but it's not a promise I can keep because he doesn't go to sleep at the same time every night. Sometimes he'll not go to sleep at all, and he'll end up missing school because of it.

So if, 7 days a week, I can't shower when there's nobody else around to watch him, and there rarely is, and I can't sleep at night for more than 4 hours, although most of the time a lot less, and I can't eat because when I'm awake I'm playing catch up with housework, getting him coregulated, getting him dressed, getting him to school, picking him up from school -early most of the time too, when am I supposed to work? What job do you genuinely think I can do? They'd have to also be able to accomodate me and my disabilities that I've sustained since having a disabled child and because of my disabled child.

Do you think most parents of non disabled children get more than 4 hours sleep a night, every night? I do. Do you think they get to eat at mealtimes? I do. Do you think they can shower without worrying about their child eloping? I do. Do you think they worry about the damage their children throwing their heads back so hard it bleeds or causes a significant amount of damage when your back is turned? No I don't.

Stop comparing SEN parents to non SEN parents. It's not even remotely the same.

We can't sustain work because we're at our physical capacity. If you can't understand that then you're ignorant.

That is just normal child development, and does not last forever. OPs son is 10.

A baby is different. You chose to have a baby. No one chooses to have a disabled child

Everyone understands, you’re the most dedicated employee ever and have done all the things 😂.

My 8 year old hasn’t slept through in 8 years. So that’s 7 more than yours, right? Non-SEN parents have some confidence that period and it’s exhaustion will end.

You truly, have no clue. And that’s okay, but your comparisons won’t help you understand.

However, while their child is at school, money is being spent on 1-1 care, extra assistance etc, carers looking after the child, my question was why can't the Mum work while her child is being cared for for up to 6 hours each day,

Partly because it’s not 6 hours each day. My DD has a place in a specialist school. Last week she had two health appointments both meaning half a day off school - on different days of course. She had an incident in school that needed me to attend, that was another 2 hours when technically she’s being cared for. The week before she refused school two days so in the course of two weeks I’ve had her home or out of school for essentially 4 days out of 10. And that’s not untypical.

Add in my DS having a health appointment and needing support with transition days and I had 4 days in the past fortnight with no childcare/school issues.

Its not as simple as “they’re in school”

That late? Going by Goodtogossip's narrative surely there was nothing stopping her working from her hospital bed!

What has me being deaf have to do with this thread? No one is having to hear anything? 😟