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.

Yes. As a full time carer I have never come across judgement in real life about the fact I don’t have paid work, ever, or at least not to my face. Quite the opposite in fact. And that’s as the parent of a child who doesn’t have astronomically high needs, although they are reasonably complex. A lot of the time he probably doesn’t even appear disabled.

I find it's only the in-laws who judge me in real life for not working. It does get a bit special needs top trumps at the school gates sometimes. Parents arguing about whose child has the highest needs. Parents arguing that they want the same support for their child that someone else's child gets. I do understand the last one though. Many children with SEN are getting less support than they need and no parent wants to see their child struggle. My son should be in a specialist school really but there are no specialist schools near us which carer for my child's needs. There used to be but children like my son are in mainstream school these days.

Ignore these people. You know yourself you're doing the best job for your DD. Stay strong and don't lose ever doubt yourself ❤️

I’m sure people don’t know that motability cars are paid for via the mobility element of DLA/PIP (or that there’s often a hefty deposit to pay, especially if you need a wheelchair accessible van - that’s pricey!). I think they imagine you just wake up to see a new car parked outside your house, totally free of charge! It’s baffling that nobody ever asks themselves how plausible this theory actually is.

I have 2 children. 1 I would describe the same as yours and throw in adhd and immunosuppressed. However, I still work, part time so within school hours. Hospital appointments an employer has to let you take so no issue. And I work for the NHS so some understanding. If your fed up of the consequences of not working, do some work. And you can't moan about your parents nine wouldn't cope with the kids, but they aren't their kids so not their problem. I chose to have them, my responsibility.

Maybe make more use of his HF to fully appreciate him too. I won't say not hard work, it is, but I focus on different because she has her own gifts.Found my daughter is amazing at some hobbies as her brain suits it and it also means we have something for her to enjoy and we can enjoy with her .

Stop worrying what folk think. You have good reason not to work.

Employers don’t have to give you time off for your child’s medical appointments. You can apply for parental leave which is limited and unpaid but then what’s the point of going to work if you’re having to constantly take time off without pay?
I have disabled children. I can work now but I couldn’t for years and I appreciate that for some families paid work will never be possible. No idea why people insist it always is.

Well isn’t that most wonderful for you and don’t your shit smell like roses????
OP, you clearly are living a life of Riley and are not reaching your full potential as this person has so how dare you come on here and complain 🙄

This!

A lot of employers, all government sector, do give time off for appointments.

I agree work is not always possible. But this is at least 6.5 hours 5 days a week when the child is in school. So if you wanted to you could fit some work in.

Don't get me wrong, I am often exhausted and would much rather not work! But I can so I go because I want to pay for the kids to do things, I have a motivational reason.

The OP is having 3~4 appointments A WEEK with her dc.

I can’t think of any employer that would be happy to give some time off as often as that.
On paper, Flexible working from home might make it possible as long as her dh can step in. But clearly 1- there aren’t many of those jobs and 2- I suspect evenings are still taken with running the house with 2 compétents adults.

Do you have to attend 3~4 appointments A WEEK?

If not, it’s simply not comparable

Oh good lord, the nightmare continues. 🙄

I’m sure there will be a poster along soon who has 7 disabled dc, a full time job and has been dead for 3 months to show us all how lazy we are not working

How dismissive.

I love my stepson to death, he’s a wonderful little boy who brings us much happiness and is the light in every room he’s in.

He’s also had about half an hour’s sleep in the last 8 years, leaves teeth marks in peoples arms and smashes things when he’s angry.

Let’s not pretend it’s all sunshine and butterflies, and all we need to do is appreciate them.

I actually did work until recently where I was being pulled into alsorts of capability meetings for my below entry level job that required no skill because I was just at my physical capacity to perform. I wasn't just exhausted.

I hallucinate spiders, wood grain warping, floors moving, people calling my name and crying, people stepping into the road that aren't there. I find myself looking at something, blinking and 10 minutes have passed. Or an hour. Or two hours, where I am pretty much catatonic because it's the only reprieve from my caring duties.

My son doesn't have nearly as many appointments as OPs child, and technically has full time provision, but can only access it on a part time basis. Sure I could dump him at the school gates at 8:45am and come back at 3:15pm if I and the school didn't give a shit about his social, emotional or physical wellbeing or how that impacts other children, because we all know how sympathetic other parents are when they find out their kid has been thumped or bitten by the overwhelmed autistic kid.

He doesn't sleep though. Sometimes 2 hours sometimes 4 hours but never in one go. Maybe a few naps in the car because travelling in car is one of the only ways he's regulated enough to sleep. I don't drive, so we rely on someone else for transport so that is few and far between.

Good for you that you COULD physically work. You can swivel if you think your experience is universal.

I think you and I have very different children, which probably explains why you work and I don’t. My child is amazing at nothing, yet I’m sure would be described as high functioning by many. Frankly I wouldn’t even give him a satisfactory for basic things like eating a meal or putting clothes on. I can appreciate him all I like or change my focus from one part of him to another but it isn’t going to magically make him easier to live with or parent.

I’m happy for you that you enjoy your family and can have a career, but don’t for a minute assume that every child and every family set-up is like yours, or could be like yours if only they did what you do.

When I was working as a disability adviser, I actually had to sit people down and explain the Motability scheme to them. So many people happy to criticise when they actually don’t know how it works or why it was set up. Or, in fact, how long it has actually been running - since 1978. I’m quite shocked by the number of people who also think that the claimant gets the mobility allowance and the car. The concept of handing over the allowance in return for leasing the car seems to be beyond some people. It’s only the most severely disabled people who have significant mobility problems who qualify for the scheme - it’s beyond me why anyone would begrudge them a car if it helps.

Under the Equality Act you can be allowed time off if your child is considered disabled under the Act. Employers don’t have to pay you, but they do have to allow you the time off.

And don’t forget how we’re robbing the tax payer for the luxury of a motability car !!

I find this attitude brutal.

I don’t consider my children a grandparent’s responsibility in general. But if I had a child with additional needs and my parents were in a position to assist me I would hope they would. Because they are my family & my child’s family. Not burn themselves out or work to the bone but just be of the mind frame to help.

Should I therefore adopt the attitude that my elderly mother is not responsibility either because it was her decision to have me so she shouldn’t expect anything from me?

I think it’s great that you can work if that what you need/want to do and it’s great you have a flexible role.

Nobody has to push themselves to burn out, that shouldn’t be an expectation of parents of children with additional needs.

Nobody has to push themselves to burn out, that shouldn’t be an expectation of parents of children with additional needs.

But all too often it is - maybe not an explicit expectation but the result of constant questioning about benefits and why parents aren’t working while their kids are at school. Comments that parents have a higher income than “me” and maybe I should stop work too for all that free money drives parents to take on work they don’t have capacity for on top of caring responsibilities.

There’s also the expectation from school, health care and other various professionals that you can just be available during normal working hours, often at the drop of a hat because your child has additional needs. They way transport for specialist schools is arranged, the absolute dearth of wrap around care once your child reaches 12, despite them still needing supervision, the absence of respite care all places pressure on parents who care for children with additional needs.

To put this in context, the Scottish government announced an increase in funding for the short breaks scheme for carers in Scotland, bringing it to £13 million. There are around 750,000 carers in Scotland so that’s about £17 per carer, out of those 750,000 only 88,000 received carers allowance supplement payments last year so 10% approximately of carers were in receipt of carers allowance with the rest presumably balancing caring responsibilities with paid work. The reality is many carers live in deep poverty - which adds to the pressure and leads to burn out. It’s not about whether grandparents help or not, it’s the value we place on informal caring.

The minute something costs anything in society people start to question it.

Regarding grandparents and wider family members, bearing in mind that grandparents are often elderly and other relatives probably work I also think we also should push for/normalise a society where the village helps those that needs it. People were better at it years ago.

I know.
Who can afford multiple unpaid time off, and how many employers are going to remain sympathetic to someone who needs to attend frequent appoints - despite what the law says?

I’m not sure “wanting to” comes into it for a lot of people. And there’s no moral imperative here.