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.

Why is it any different to a person with health issues having to prove they can't work to receive benefits? Why is it that a SEN parent can say 'Oh I can't work' without providing evidence of why they can't?

"Something they'd be doing if their child was SEN or not."

The OP's child has high care needs. Do you understand what that means? It means it's literally NOT the same as caring for an average 10 year old - it's MUCH harder. She literally wouldn't be entitled to carers allowance if it was the same thing. DWP has already made that judgement.

The government has recently put quite a bit of funding into helping schools put in place additional resources for SEN children. Not enough extra money, I grant you, but they've not cut it.

How do you feel about the state pension? What about pension credit?

OP has said she has other children to care for, and also takes that time to look after herself. You can't pour from an empty cup.

Someone posted a link upthread about how many parents of SEN kids consider suicide. Sometimes, they do it and take their kid with them. Have a dig on Google and you will find cases of desperate parents pushed to the brink. Utterly heart breaking.

The payment for caring for their own disabled child is £81.90 per week. How much specialist input in a special school would that finance? About 10 minutes? Full time carers save the state money.

Oh, love.

You’re preaching to the entirely the wrong choir.

Allow me to explain.

I was a SENd teacher for 5 years, and was a trainer for other specialist teachers. I’ve also worked closely with local authorities for intervention education packages for disengaged and SENd learners. I then moved into recruitment, and initially specialised in SENd, before moving into management and ultimately the position I’m in now.

All of that, combined with the actual disabled child that lives in my house, qualifies me to have far more of an idea than you do in what it takes to raise a SEN child, and whether those in education think the parents of those children are somehow stealing money the education system could have. Spoiler alert - nobody thinks that.

Just give it up. You work hard, good for you 👏🏻. But there isn’t a single parent in the whole planet waiting for your validation, on a thing you don’t understand.

They have evidence. It is the high rate of DLA their child gets.

They've provided evidence in the form of DLA mid or high rate care or PIP daily living

@Goodtogossip again I have a SEN child and ‘choose’ to work whilst they are at school. I still receive the exact same amount of Carers allowance and DLA then if I didn’t work. I still don’t contribute any money in taxes. The only difference it makes is a little bit of extra money for myself. I still get the exact same help in benefits. This is going to be the case
for anybody finding a job that’s flexible around school and pick-ups- they still won’t be paying tax and they will still be receiving benefits, they’ll just have a bit more money overall for their family.

They've already had to prove the level of their DC's needs to get the DLA in the first place. One of those many "forms" you think they can just quickly fill in while DC is unsupervised somewhere like you had to.

DWP considers that anyone with those needs is entitled to have someone as a full time carer claiming carer's allowance. That's already been proven by the DLA evidence. So why do you want there to be another hoop to jump through?

They are making appointments, ringing education boards about statements, buying incontinence pads, replacing broken furniture, seeing doctors about support, receiving counselling so they don't have a breakdown trying to manage everything, booking physio, collecting children on staggered hours/settling in periods - these are just some things parents of children with additional needs have to do.

You're forgetting alot of us can barely leave the house with our children because of their needs - so we can't catch up on things at weekends etc. Alot of children with additional needs can't go to grandparents houses or other family members as they can't manage their needs! These are children who have intense meltdowns that can cause physical damage to property or themselves or their carer. This week alone I've had to collect my son in the morning both Monday and Tuesday as he's vomiting due to anxiety. This is unmanageable for someone in employment.

I know a person who has a SEN child who chooses not to work & does all of the things you have listed when her child is at school. Replace the grapes with chocolate or McDs though. She gets ALL the benefits including the new car every 3 years, higher DLA, carer allowance etc. Her child is at school Mon - Fri & she has a Childminder care for him at weekends. She spend very little time with her Son. Please tell me why she is able to choose not to work when another friend of mine has a lot of health issues & has been told they're fit to work when in actual fact they're fit to drop.

She is on carer allowance so does not have to look for work. That is why. She has a disabled child. If you don't like that, then take it up with the DWP.
Her situation is totally different to your other friend with health issues.

Ah, so now it's starting to make sense where your bile is coming from. One possibly fictional person whom you perceive to milking the system, in your eyes obviously means all parents and carers of SEN who don't earn a salary are milking the system.

Unless you're literally inside this person's life, you're not equipped to know how much time she spends with her son. Nor how her household finances work. But also, you know what? If her SEN DC entitle her to such a high level of support, her life might just be so plain awful that the odd bit of fast food is the highlight. Fancy swapping? No, didn't think you would.

No-one is saying your friend shouldn't be entitled to benefits for her health - in fact I'm sure lots of us would empathise with the difficulty of getting DWP to accept medical evidence.

Particularly those of us who have had to go through the tortuous disability benefits process FOR OUR CHILDREN...

How do you know so much about this person's life btw? Let me guess - a family member you don't like very much?

No, her family have decided how her life is without the slightest idea of what’s actually involved. And much like you, have sat in judgment, rather than helping.

No I do not fancy swapping however, you assuming I don't know how hard it is for her is wrong. I volunteer to have her child whenever I can to give her a break as I do understand having a child with SEN is tiring & hard. At no point did I say she was milking the system so again in your assuming things you're wrong. I'd think about getting your facts right before accusing me of spouting bile!

Some people are just arseholes. When the BBC were highlighting the struggles faced by carers who were being unfairly penalised for earning a fraction above that allowed on CA my STBEX excitedly emailed me suggesting I get a job. That was his take home. Not how unfair it was. Not that I am on duty 24/7, have been for over a decade and will be until I die or that it's not possible to work outside the home with no respite (I would love this for my mental health) but just anger that he can't believe someone with a masters degree couldn't work from home when our son was asleep.

Twat.

He is living his best life, sharing outgoings with new partner that he lives with. He is partially retired but still gets around £5K per month income and pension but only works 4 days a week. I get around £500 per month for longer hours, no holiday leave, no pension etc.

He claims he is living month to month so can't afford to financially help out our other DS whilst at uni but instead lectures me that as DS's 'landlady' (not his mother and the person who HE for 6 years so he could get the grades for uni) I should manage finances better so DS pays less board.

Roll on divorce and financial order.

This is someone who at one time lived with disabled DC and understood the cost.

There is wilful lack of empathy and your PIL will never understand. The culture encourages it.

It is unfortunate that some parents also do not understand that some DC may appear to be 'high functioning' but require high levels of care whilst receiving low levels of support and that this impacts on carers ability to work and that maybe with the same level of support things may be more achievable. It's not because you have a stronger work ethic.

WRONG! Its a very good friend of mine who's child I care for whenever I can to help her out. Keep your stupid assumptions to yourself.

It's very hard to get high rate mobility for a child with additional needs and get a DLA car - so they have a child with mobility issues as a result of their needs. You sound horrible and spiteful

She could be up all night with her disabled child

You're correct you don't breastfeed 24/7, clever you! I actually did work between feeds doing home data input for a family member to help her out.

Nope he is medicated to help him sleep so she gets at least 6-8 hours sleep most nights.

Are you caring for their child as a favour or to gather information to be able to assess them to see if they should be working more 😂

Oh, your implications are clear enough without you needing to use specific words. And I can only base my responses on the information made available.

What does puzzle me, though, is why if you're so involved in this family's life it hasn't taught you a modicum of compassion.

"Keep your stupid assumptions to yourself" - you should probably have taken your own advice before you started posting on this thread.

To be fair, you described the other person as your "friend" but that person as "a person I know". I don't think it was an unreasonable assumption.

Your friend is very lucky to have so much support and have reliable childcare in both you and their childminder. I would say that is very very rare for a child with such high needs.