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.

The country is not financially crippled because of someone's 80 quid a week pittance carers allowance, is it - let's not pretend it is. Particularly given most carers are actually saving the state money.

It doesn’t. It applies to all SEN parents who receive DLA for their child at a level qualifying them for carers allowance. This poster has displayed a level of ignorance, judgment and willingness to repeatedly cause offence on a scale I’ve rarely seen on MN. Quite an achievement.

I have a son with ASD and manage to work three days a week ONLY because I have childcare support from my in laws and mum on my work days.

If not 100% DH or I would have to be a SAHP, no way could DS access wrap around childcare or holiday clubs. I say this as someone who was dealing with his school refusal today until lunchtime…

No one has suggested that all SEN parents are unable to work.

People have suggested that those in receipt of higher rate dla and get carers allowance are carers for a minimum of 35 hour a week and that is thier work. Although some find they can also work another job, there is no requirement to do so as the state only expects people to do one job.

You don't feel it is work because you think caring for someone on higher rate dla is comparable to normal parenting.

Please do - go and bring this up with the friend whose child you look after and show them this thread. Let us know what they say !

And what purpose would that be? report me then you don't need to let me know or get my permission.

Nope. Look back at all of your posts. You’re spitting venom at people who have actual real world experience of caring for profoundly disabled children and yet you persist. The country hasn’t been financially crippled by parents of disabled children. Or by genuinely disabled people in general. There are myriad other reasons, it’s just that the old, the sick and the disabled are convenient scapegoats. You’ve bought into that narrative hook line and sinker and you wonder why no-one takes your posts seriously.

@Goodtogossip do you understand that it's not all "SEN parents" who are eligible for carer's allowance? Just ones whose DC have high enough needs that they're eligible for medium/high DLA?

Typo, its her Son

‘Him’ isn’t a typo.

Convenient.

So you actually know nothing about the criteria for you?

For PIP, you are seen as able to do a task if you can do it repeatedly and safely.
(fwiw DLA is the child equivalent)
If that child has to have a wrist wrap as a Y6 to be able to walk, they can’t do it safely.
So yes it’s right that he can’t do that task.
It’s not just about the ability to walk.

Which just shows again that you do t know what you’re talking about but judge away from what you THINK is asked for.

A child with SEN, especially emotional delay, needs their mum. And needs their mum at their best. Not burnt out and frazzled trying to balance everything. But available physically and emotionally. Basically a SEN child needs their carer to be able to drop everything at a moments notice for meltdowns during school hours, appointments etc.
Op certainly shouldn't be trying to shoehorn in a job to the detriment of her family, just to appease what society says she should be doing.
Motherhood needs to be valued much more highly and people need to stop believing that you can only add value to society, by being in gainful employment.

It took a while, but you got there in the end. It is plain to see that you have an issue with what you perceive to be some sort of perk, that full time carers are getting. Mentioning the "free car" tells me a lot, as well.

Does MN have a block option nowadays?

It would be ineffective, even if there was one, due to posters being able to constantly name change. It does not seem to be a popular opinion on here, but I think that ability to do so, should be restricted.

Are you a working mum?
Have you ever cared for a special needs child???
Seriously. .I advise you to volunteer at a special needs center and see the hard work gone into it.
There is so much to do whilst the child is at school.

Alot of special needs children don't like change.
That means dealing with a full meltdown with basic tasks:
Washing bedding...they may be sensitive to smell and like the way the old bedding smelt
Food...they may refuse alot of foods due to tastes and textures. They are not being awkward. The brain finds such changes so overwhelming to a fight or flight response
Combing hair ...can be very hard as the sensation of the brush is very hard.
Putting on clothes,,, the tags of clothes and the fabric and fitting may cause sensory overload.

A one minute task can take hours. Literally.
You are a carer, a mother, a full-time chef that has to adjust most meals, shop around for the exact same toothpaste even though it may no longer exist.

Oh and bath and shower time....can take hours of work to even prep for that.

I haven't even gone through the majority of it.

And you are saying she should work if her son is in school. Wow

My son can physically walk, but he falls under the virtually unable to walk because he cannot travel without restraint due to the significant risk of elopement, complete absence of risk awareness, inability to follow simple adult led instructions safely and reliably and on a most days basis.

He has no physical disabilities. He can walk, he's extremely good at walking and running.

There are a few ways you can get high rate mobility element that don't require you to physically be unable to walk however you do need extensive evidence and so your friend must have this information written in reports from professionals somewhere.

I'm an sen mum. I work. That's because I in a profession where I can wfh. My 8 year old child has lots of medical appointments, but not every week. My baby loves nursery. Sen children aren't all the same. Really high disabilities often have residential care and those parents can work more easily. There's a scale, it depends on do many different things. Never judge someone who cannot work. Maybe another person in a similar situation could. But maybe their cup is full. Be kind.

Let me add: older children who still wake up multiple times every night. Once you’ve done 10+ years of never having more years 2-3 hours sleep in one stretch (and hardly ever more than 5 hours per night), try working during the day.
6 hours school are realistically

• 1 hour school run (no, they can’t do it by themselves, and no, they can’t just be dropped at the gate)
• 2 hours paperwork
• 1 hour housework (stuff you can’t do with your child around because of noise/smell)
• 2 hours sleep

and - in contrast to a carer - there are no breaks, holidays, its relentless 24hours every day

It’s the ‘free car’ that most people land on when talking about disability benefits. With a bit of research they would know that motability is a charity working with the motor industry to provide discounted vehicles and adaptations to allow disabled people what, for some, will be their only chance to be mobile.

Motability is absolutely nothing to do with the DWP and PIP/DLA claimants can only join the scheme if they are on the enhanced rate of mobility component - which only those with severe impairment will qualify for. I’ve been a disability outreach worker for many years and for me, one thing stands out. I’ve come across many people who take the view that a mobility allowance is a fair provision for the disabled, but who completely change their stance when motability is mentioned. The general consensus seems to be that disabled people shouldn’t be able to access ‘free cars’. I’ve never understood this attitude. The mobility allowance is payable if you meet the criteria. If people have no problem with that, why should they have a problem with the ability to exchange that allowance to lease a car ? Given that the provision of that car is at no cost whatsoever to the tax payer, it doesn’t make any sense, especially when you realise that for many people with substantial mobility problems, a car is the most convenient option.

Shame.

Yea lack of sleep is the worst. I couldn't carry on working in a nursery. It wasn't fair on the children that I was constantly exhausted. DS is better than he used to be.
Usually get 4 sometimes 5 hours a night which is a massive improvement from 3. Even though he's on a very reduced timetable school does tire him out more.
The constant supervision is hard. When my older children were 4 I could go for a wee without worrying what might happen. With DS he comes with me but if he bolts mid wee I'm stuck and he can cause havoc in a few minutes.

As a full time carer for my daughter this thread is really sad. Like on one hand there are so many people that get it and you are lovely. But there a few of you that just don't and really you suck. it is hard enough to cope with the lack of sleep the endless tasks and care our children need but to face judgement is just too much.

I really wouldn’t take too seriously what people on this site say.