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.

Lots of people have answered you and you've just picked holes in the explanations ("but ALL mums have to take kids to appointments" etc).

No-one has to explain themselves to you. You seem to be suggesting that anyone whose explanation you don't seem good enough "can" work and they're just being lazy. That's exactly how you've been "demanding" information - by continuing to judge anyone who doesn't convince you "well enough" that they can't work. It's just really nasty.

Believe it or not I'm not a judgemental person at all. What I get annoyed about is people taking the P. If you're able to work & chose not to, that's taking the p. why should some people chose not to work & have others slog their guts out to indirectly support them. I'm not saying that's what the OP is doing. I simply ask why she didn't work when her Son was at School.

OP is saving the public purse money by caring for her son herself.

But when you're not doing your 'carers' duties, like when your child is at school you are free to work if you're able to. It's a choice whether you do or not if you're fit to work.

If the person decides then what's your issue? OP and others in her position have decided they can't work as well as being a FT carer, so...what's your objection?

But it’s not going to make a difference to you ‘slogging your guts out’

A job that’s flexible enough and limited hours enough to be purely school hours, time each side to arrive after school drop out and before pick up etc etc is going to mean a low enough income that they will STILL receive carers allowance, DLA (which isn’t based on income anyway) and not pay any taxes anyway! This is my situation.

Many people have patiently explained to you that most people in this position do not just get 30 hours a week "off" being a carer when their child is at school. I don't know what you're not understanding about that.

Your assumption of me being an entitled person couldn't be further from the truth. If I was so entitled I'd give up work & claim benefits like those who chose not to work. I've worked for everything I have & don't judge others unless they take the p*

Honestly, it has been explained to you so many times now with so many posters going into a lot of detail about the hows and whys.

@Goodtogossip it's not just what parents of SEND kids have to do differently they often have also to react to the unpredictability of those kids. I have a SEND daughter who is always best with a routine, anything off routine sends her into a spiral. But I can't control lots of things in her life to ensure that routine. She gets ill, I get ill, a teacher from the school she hasn't attended in 3 years visits for a safeguarding check, the holiday I have been desperate to have, to a place that DD chose because it's a place she's been before so she knows it and feels ok there, contact me to say the water park will be closed down, cue meltdown and holiday refusal, I work 3 days per week ( since last year. before then I've always worked full time but couldn't cope any more ) that doesn't always go to plan and I sometimes need to work late, i have a migraine which means i'm vomitting every 20 minutes for 6 to 8 hours, daughter sees this and panics. We have a trip
out somewhere planned but DD's anxiety gets the better of her and she can't get out the front door. These are just some examples of things that I as a parent deal with frequently. Then there's the reverse sleep pattern which means i end up staying awake to spend some time with her as it's sometimes all we have, then i'm shattered too but still have to keep going.
I'm a single parent too and have been since she was 3, she hasn't seen her dad in 3 years but he likes to put his nose in and rile things up from time to time.
My world has shrunk to a tiny bubble and I get no family help. I pre plan as much as I possibly can which sometimes helps and often makes no difference. DD is also a teenager so also has the usual teenage traits of selfishness, laziness, thoughtlessness, plus no empathy or sympathy and a general lack of understanding. On top of all this are all the medical appointments, mental health appointments, medications, form filling, general fighting for DD to be heard and educated and have a future and all the research that takes.
This is just my life, there will be parents of SEND kids out there who have it much worse than me. But I'm mid 50's, exhausted all the time, have no hope of giving up work but feel conflicted as work is my escape, even if it's only escape to the desk in my bedroom. I still have to run our home too and can't afford to buy in help. It's soul destroying and I am broken by it.

That because you're able to work, you chose to work.

Im only able to work because I have a ridiculously flexible employer who accepts me needing to take time out at random intervals, accommodates me not being able to do a typical 9-5 and accepts that I might work through the night to meet a deadline. I have had to step back from frontline work (social worker) because I simply couldn’t manage a case load with my home responsibilities. I can work because I have a lot of experience in a very specialist area and an employer committed to supporting me.

If my employment changed I’d need to go very part time or stop working altogether because most employers in my field couldn’t accommodate my children’s needs. My job is pretty much a unicorn, that’s why I can work.

😂

I get it OP.

I have three school aged children, two with additional needs. I tried working in a school for 6 months in 2023 and couldn't manage.

I kept having phone calls from my child with ASD to collect him early. He eventually had to go on reduced hours timetable which didn't work with work hours.

I was surviving on little sleep and had no time to catch up with anything, as soon as I got home my kids were home and their needs are very demanding - I was about to burn out.

The level of my youngest child's needs was mentally and physically draining - I was being scratched and kicked at while trying to drive the kids to school.

I was late every day as both children struggle to get ready and one small change in the routine sent everything spiralling into chaos, people with children on the spectrum will understand where I am coming from. I had a tooth almost knocked out with both my children having meltdowns while I was driving, had to pull over and ended up in tears - OH had to leave work and help me.

They need driven everywhere as they can't walk places alone and have no sense of direction.

They can't see themselves home if one is sent home early, they can't get themselves organised, they don't go on play dates or play outside or go to grandparents houses. If they aren't at school they are at home.

One has a full time one to one in school.

Raising children with additional needs is HARD and it's not as simple as 'why can't you work while they are at school' - because I'm a fucking human being not a machine! It's extremely hard and wears you down both physically and emotionally! I use the hours they are at school to go and do the shopping that I can't do when they are with me. I clean the house that they destroy daily. I make appointments that I can't attend with them with me. And God forbid I also get my hair done or go and buy myself pyjamas or anything else that makes me feel like a person! Some days I just slump onto the sofa and google how to manage life without breaking down because everyone depends on my care.

Same. I’m in a senior position in the business I work in, and have over a decade of experience.

I’m accountable to one person, our CEO, who is happy for me to be flexible however and whenever I need as long as the job gets done.

This, combined with school still being a full time option and some family support, means I can work.

That doesn’t make it any less tiring, which is in itself a reason not to, and not everyone is going to be able to be secure in work in the same way either.

For me and my DD (age 9)…

Change her incotinence pads (doubly incontinent day and night) whilst she’s trying to kick me…kind of like a toddler

It takes two adults to brush her teeth

I have to dress her and undress her, shower her

She chews inedible objects, basically anything that can go in her mouth does. Rocks/lego/crayons/pennies…basically anything. She needs one person watching her at all times. She has choked several times before at home and at school despite being constantly watched.

I have to feed her and watch how she is drinking because she is at risk of aspirating fluid into her lungs.

Specialist skin care twice a day.

Monitor for seizures.

Physically Support her when walking outside over trickier terrain. Push her in her wheelchair over longer distances. Usually she will protest this and drag her feet/scream etc etc but it’s either that or we never leave the house.

DD cannot manage a walk to the local shop without meltdown. She is scared of noise, babies crying, the hoover, the microwave, hand dryers. This means I can only do things like the supermarket shop/hoovering when DD is at school. In the school holidays I can only do these things when DH is at home and she’s in bed.

She can’t be left alone even for 30 seconds…she even comes to the loo with me!

Thats just the daily stuff without going into all her specialist consultants, physio, SLT, school stuff blah blah blah…

I'm totally up for people in genuine need receiving financial help & claiming benefits. It's those who choose not to help themselves when they are in a position to that I don't agree with. I feel if a SEN parent can't work then they should be supported. However, if they are choosing not to it's different. That applies to everyone not just parents with SEN.

So you agree that if a person is able to work, is fit & healthy & chooses not to work it's ok? You must have very low standards

AND just so you know, I'm very bright & not judgemental at all just a realist who doesn't like people taking the p*.

What you should be 'taking from' it is that people are recognising that you are going to be closed-minded regardless what you're told, and understandably opting just not to engage.

You've had some deeply personal (and imo, heartbreaking in places) shared with you and yet you're still quacking 'But they can still WORK! Explain to me why they can't WORK!'. So it's kind of understandable that people are choosing not to waste any more time or keystrokes on your nonsense. Especially given your refusal to acknowledge that parents of SEN are working, very very hard, just not for money which is all you seem to think matters in the world. I actually pity you for your so-called value system tbh.

I just hope you've brought your DC up to be kinder people than you appear to be from this thread.

If the SEN child is on the high rate of DLA, then their parent is classed as a full time carer and does not have to work. That is how the benefits system works.
OP is one such parent. She does not have to work. It does not matter that in your eyes she could... she does not have to.

And I'll say it again: who decides who "can" work?

Are you saying carers should all have to submit detailed accounts of what they spend their time doing to the DWP to claim their £80 a week, to see if they're "worthy" or not?

OP doesn't feel able to work. It's not up to you to decide that actually she can unless she justifies it well enough to you.

Ok... but we are assessed and if our claim is approved then we receive state support. State support isn't just handed out to everyone with SEN children choosing not to work. It's based on need.

So only those who have been assessed and deemed of need are receiving financial support.

It's not easy to get that support. You've got to have heaps of evidence.

So if someone has heaps of evidence, has been through the assessment process, received an award for DLA and then has also claimed carers allowance which saves the state money in other fees that SEND individuals cost society, then why does this bother you?

Yes, it is obviously ok for someone who is a full time carer to someone with higher rate DLA not to then have an additional paid job. Do you not think it is ok?

While their child is at school they're not caring for a disabled child are they? The school is & it's the education department where all the cuts are being made so Teachers are suffering. It would make more sense for funding to go to schools for SEN children than pay a parent to care for their own child. Something they'd be doing if their child was SEN or not.

I chose to work but the reality of me chosing to work is the state recieves less tax from our family unit and spends more on it.

I work for my sanity and noone judges me because I work.

I'd like to thank all the carers that didn't do this and keep the bills down for everyone else.

So what exactly do you think OP is doing during those hours, given how she's described her life? Painting her nails? Eating grapes? Watching Loose Women? Bit of online poker, maybe? Ffs.

I think your levels of faux obtuseness surpass anything I've ever seen on MN before. That's not meant as a compliment, in case you're unclear.