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 am (potentially incorrectly) under the assumption that even if OP got a job her benefits wouldn't be affected anyway due to the type of benefit.

I am also not telling OP to go get a job, in fact I've said several times I don't care if she does or doesn't - but saying she has no idea how or simply cannot, isn't true.

She can, she could make it happen - that's all I'm saying.

This.

OP has a DH who has cut back his hours to help with DC.

She can currently earn up to £151 a week, rising to £196 (16xNMW) in April.

No, he is still working FT or near FT hours, he is doing it freelance to get the flexibility to make them up later if eg the child is unwell.

It’s the refusal to recognise that there is a world of difference between the needs of a disabled child in comparison to a non disabled one. Child DLA for care is payable from three months and the mobility component from the age of three. This is in recognition of the fact that all babies and young children have care needs, but for those who are disabled, those needs can be significantly higher. And as the child gets older, the care needs are ongoing whereas a non disabled child will become more independent.

The school run is an interesting point.

In the past we have battled school refusal and the related issues getting ds into school.

he is 15 now. He is thankfully well supported in school and educationally things are probably about as stable as they will ever be. His school is a mile away, unlike most children his age walking or getting the bus isn’t an option.

his school have a free breakfast club option each morning which is intended to give children like DS the gentle start to the day needed - this means I can get to work for 8.30.

at the end of the day I have to park the car and physically meet him and his 1-1 at the door. He isn’t safe to make his own way to the car. At the moment I work past his school finish time two days a week so my parents (in their 70s) collect him. This is getting too much for them now so I am having to reduce my hours so I can do all pick ups.

thats just a small snippet of how something like the bog standard school run can be so much more complicated by disability. I would love to just be able to wave him away at the door, or for him to walk home and let himself in!

People get jealous of our motability car too. Sad.

For those making the comparison

society doesn't expect parents of under 1s to work.

There is no requirement to work under universal credit and shared parental leave/mat leave is 1 year and the total pay over a year is more than the equivalent carers allowance over that time period.

There isn't a requirement to work for under 3s if you claim universal credit either, but obviously no mat pay then.

I dont think a disabled 10 year old is anything like a baby or toddler personally, but since others do i thought it was worth highlighting.

That you have one, or what it is?

Is it a motability Mercedes? 😂

Being jealous of someone for being disabled is bizarre.

Just as an example, this week my older dc between them have 2 appointments and a piano lesson. So between us dh and I will work it out so one of us is with our youngest while the other one of us is at the appointment/piano lesson. Also dc2 starts college at 9am 2 days a week so on those days dh and I will do a school run each. The rest of our youngest child's class walk to school on their own but I can't even drop him in the playground at 8:40 and whizz off to the college. I have to wait with him until the teacher opens the door at 8:50 and see him into class. It's things like that which dh now helps with. In theory he could reduce his hours so we were both working part time but there wouldn't be much point as dh's work is now flexible and mine probably wouldn't be.

100%, OP.

But a toddler is NOT high funtioning.
Neither had OP said anywhere that he is high funtioning.
Yes, he is good at maths.
The actual problem that I am pointing at is that people do use their imagination, only. They just seem to assume a lot of stuff in this website.
You say something is white and posters down the line make it too bright, not matching, light reflecting that bothers the neighbour, actually grey/ pink... whatever.

And your point would be ?

I’m disabled. In a wheelchair. Have the smallest motability car that will accommodate my wheelchair. Motability has kept me mobile, so has kept me working. You’d be surprised at the number of people I’ve worked with who think they are responsible ‘as tax payers’ for the fact that I can lease the car at all. Despite the fact that motability is a charity and has nothing to do with tax payers money.

That if you are the type of idiot that thinks being a carer is the same as looking after a younger child. It would still be unreasonable to expect carers to work, when we don't expect parents of young children to work and that careers allowance is really crap as maternity pay is generally seen as crap, but it's more.

Thank you for clarifying. Agree 100%

If I were you OP, I’d tell the PILs, you could send DC to a specialist residential school, and then you could work! I have no idea how much such a school would cost for DC, because it depends how complex his needs and behaviour are - but it could go upto £250,000 - £300,000 pa. Even say £100,000 pa would probably cost more than you could earn gross, never mind your tax - so as taxpayers, they should be grateful that you are saving society so much money, by looking after him yourself for a pittance. (I assume you claim the princely sum of £81 per week carers allowance?)

If you asked Social Services for support, because say you wanted to work full time, including school holidays, for 35 hours a week, with an hour’s travelling time a day, that would be 40 hours care x £20 per hour min - so £800 per week cost to Social Services?

Tell PILs to get real. Iirc, the latest figure I saw quoted by Carers UK, for the saving to the economy by carers was £184 billion pa?

I’d see your point except that the OP also added that school struggle with him so how am I supposed to work which I took to mean that she needs to be available for school refusal and/or meltdowns. Plus she mentioned that DS never sleeps through the night. In laws likely know all that and still judge.

Probably I’ve heard too many times men saying what do mothers do with all that time when kids are at school. Completely ignoring that mother’s looking after children then also ‘work’ from 3pm until 10pm every night.

In agreement that In laws can hold on the judgement and appreciate that paid work outside the home is one step too far. As others have pointed out, the OP is working and saving the state (and taxpayers) a hell of a lot of money.

What utter dicks.

Caring for your child with SEN is a job in itself. You are saving the taxpayer money.

I also don't buy into this idea that anyone who is not in paid employment is a drain on society. Even people who are unable to work bring something to the table... even if it is just a smile on their friend's faces. No one is useless.

Because she's getting it in the neck from PIL regularly and from society in general. She's had pages and pages of it on this thread alone. And she's pissed off with it, that's why she posted about it (it's there in the title). She wants people who aren't her and DH to butt out of their marriage and stop making judgemental comments to/about her. She basically wants society to change so people are less arsey about things that don't concern them one little bit.

But a toddler is NOT high funtioning.

The term high functioning doesn't mean when compared to the rest of society.

It's not comparing toddlers with adults.

It's not comparing disabled ten year olds with non disabled ten year olds.

It's comparing a person, in the case of this thread a ten year old boy with X condition, with other ten year old boys with X (the same) condition. Some will be deemed high functioning and some won't.

Someone posted on another thread that a better term, that would be more easily understood by laymen, would be to say someone has X condition with or without additional learning disabilities. If people have a disabling condition, they don't suddenly become non-disabled just because people with the same condition and additional learning disabilities are more disabled.

High functioning doesn't mean a person can function just fine. It means the person is disabled, but less so than some others with that condition.

All of which people do not understand. And that you love DS, too. It's not a job it's a life. 💐

The term high functioning doesn't mean when compared to the rest of society.

It's not comparing toddlers with adults.

It's not comparing disabled ten year olds with non disabled ten year olds.

It's comparing a person, in the case of this thread a ten year old boy with X condition, with other ten year old boys with X (the same) condition. Some will be deemed high functioning and some won't.

Yes, thank you, this is a fantastic way of explaining the comparison of needs. Very eloquently put.

The more I think about functioning labels, the more they confuse me. Oftentimes I'm against functioning labels and then the more I think about the alternatives it really divides me. I disagree with the American model of giving autism levels too because in my childhood and teens you would have classed me as a level 1 autistic or high functioning autistic and now I require significant support to manage my calendar, significant support to manage my medication, significant support to clean, iron, fold, put away, and wear the right clothes, significant support in public to avoid changes to plans and routines or overwhelming environments, significant support with hygeine, but the thing is I can talk, I am hyperverbal and I have the right kind of support so I often look put together, and not at all disabled.

Compared to my cousin who has never talked a day in their life, but can manage their daily living activities pretty independently, copes with changes a lot better than I do, has more traditional obsessions and collections and hyperfocuses, requires support only when speaking is to be expected as they suffer massively with social anxiety around people's misconception that because he can't speak he can't understand what is going on, and he visibly stims more, but he's a right book buff. He loves learning and probably has a whole library of knowledge in his brain.

So you can have autism, without learning disabilities and still be medium or high support needs. Support needs labels are more effective at giving insight to a person's needs. Needs labels don't indicate developmental function though and this is what divides me the more I think about it.

My own little boy is non-verbal but thrives in chaos, has no social anxiety, doesn't visibly stim, makes noises like he's talking such as delayed echolalia and for his peer group actually uses those phrases to roleplay and maintain friendships, has some struggles with transitioning and changes but although his reactions can be intense they're very short lived. Many people that have met us don't even know that we're both autistic. They just see a happy zoomy playful little boy and a really shy mum, but we both have to have quite a lot of daily support especially compared to my non-verbal autistic cousin who is visibly autistic to those who see him.

I have however said myself before that the difference between people with autism that are "high" or "low" functioning is that low functioning people have learning disabilities, and I have changed my position on it as I believe I was wrong. Higher support needs people may have a higher comorbidity rate with learning disabilities especially if they've been high needs since birth, but it isn't necessarily factual. Again, it's another reason why I am so divided on the functioning labels.

I can also see the side of parents with autistic or disabled children who have significant impairments and disabilties preferring functioning labels because their children are high support needs but they're either unlikely to progress developmentally at a rate that will eventually allow them to catch up to their peers, or they've received no support post-diagnosis to better their children's outcomes or even with interventions and therapies, there has noy been or will not be any improvement in functioning and their care needs will either remain the same or need to be increased.

So where as I once felt like I was pretty solidly against high and low functioning, I've actually found myself feeling a bit shaky, and even describing myself to others as medium to high functioning with medium support needs, and my son high functioning with high support needs. I don't think there is or ever will be a perfect way to describe in a simplified way how each persons autism affects them.