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.

Being a SAHM should be a valid choice with or without SEN children. We have come much too far the other way these days and expect parents of young children to be working when that isn't always the best option for the family and their needs.

In your situation work would just be adding another layer of stress and probably for very little monetary gain given the hours you could do.

There are still loads of people who think women should be chained to the kitchen sink.

The only difference now is they judge either way.

OP wasn't asking for suggestions about what job to do though, she hasn't said anywhere she actually needs to work

What do you do during school holidays? I am genuinely interested as I am not working at the moment and one of the main reasons is because I can't find care for my son in the school holidays.

I’d just ask pil if they are able to help out with childcare every time they bring it up. If you want to work, you and dh should hash it out together. With him being flexible, he would be able to help with the unexpected.

@SnakesAndArrows how did I? Lots of the other posters are speaking about working for some sort of mutual goal or greater good. I don't give two shits about that, if society want women with SEN children to work then they need to provide SEN appropriate childcare.
I just said that work might be beneficial for the OP's own self worth. Then she wouldn't care so much what people thought about her. There are flexible very part time jobs out there and it gives you time away from the SEN admin and housework which seems all consuming. Also makes husbands step up and do some solo childcare for once. Not saying it's the right choice for OP.

They wouldn’t commit to it, having helped out five times in 10 years. Would shut them up though.

I do not work. I also have a 10yr old with similar needs, but he is in special school. I could work but the benefits of doing so, for me and my family, do not outweigh the negatives.

Benefits

Keeps a foot in the door to the world of work
More money coming into the house
Gives me a focus outside of the house/my child
Contributes to society
May result in me not be able to claim the £4k of benefits I get in (Carer’s allowance) so less of a drain on the state plus I’d be paying tax

Negatives
No time to rest and recover from the mental and physical drain of looking after my child resulting in me being less able to respond appropriately to unregulated behaviour, which results in an increase in unregulated behaviour which starts a downwards spiral.
No option to go back to bed once DS has left for school if I’ve been up half the night.
We would probably need to buy in more services eg cleaner to have the same standard of living. If we assume, for now, that I’m going to only work term time as trying to cover holidays is a whole other kettle of fish, realistically the only jobs I’d be able to get are TA or school office admin. By the time we’ve paid for the cleaner and taken off the lost carer’s allowance the amount I’d actually be bringing in would be a pitiful amount.
As a TA job is less flexible chances are if my child was ill/was refusing to go to school/ there was a review or other meeting that I needed to attend/there were hospitals appts it would then probably fall to my DH to take time off for it despite his job being many times better paid than my TA job.
With DH now taking on more of the mental load he then might start to crumble, because let’s face it the mental load when managing a child like ours is considerable.
More life admin would need to be done at weekends and evenings which would mean less attention for DS and less of a chance to unwind and do activities that make life meaningful for DH and me.

Yes, it would be possible for me to work, but as a family we choose to make things sustainable in the long term, and as bearable as we can, by allowing DH and I time to do things that make us happy too. In doing this I think we are protecting our own physicall and mental health, reducing the risk of burnout and thereby allowing us to meet DS’s needs more fully now whilst ensuring that we can continue to do so into the future. The support we get from the state is minimal, and it takes time and effort to find what is available so we need to be as self sufficient as possible. It the wheels fall off there is just nothing there. I know, because we’ve been there. It also allows me to spend time finding the opportunities and support that do exist for DS thereby giving him the best possible chance in life. A lot of the stuff he accesses it not easy to find. I know many children in his position who don’t do any of the things he does, let alone the shear number of things he does, as they don’t know about them, and even if they did don’t have the time/mental energy to access them.

We are exceptionally lucky we can afford for one of us not to work. This option should be available for all families with children like mine.

I try to think that those who are ignorant clearly have no idea what they're talking about OP. The level of functioning doesn't make any difference to what comments you'll recieve as to some people it doesn't matter, you should be working regardless. I also wonder if those making these decisions need to justify their own decisions or feel insecure in what they have chosen for themselves/ their family. It's more about them than you.

My ds has complex needs, requires 1:1 in highly specialist provision and 2:1 when out in the community. At 15 years old we've not had a full nights sleep (actually before that as eldest was just two when younger ds was born). He'll never live on his own. To give an idea of how he presents. Dh works and I gave up work. I've had "what do you do all day?", "I wish I didn't have to work", "if only we could all not work"......

Did your mil and fil both work while your dh was a child? Presumably he doesn't have send. It could be that if both his parents worked in a time when it was more unusual, they're justifying their decision or if they didn't both work I'd be asking why they feel they were wrong in how they parented a child that needed much less support.

I would just ignore your PIL tbh. They sound awful.

We both work full time, and it’s incredibly difficult.

I do sort of like the separation and ownership of working, it’s something that is just mine and can be a decent distraction.

But the very last thing anyone wants after being awake either from 2am, or all night, is to work for 10hrs. Life really is 110mph, pretty much 24hrs a day, and there are times when that isn’t copeable.

At the moment we are still supported by breakfast club at the SEN school he attends and by grandparents. We’re also fortunate that my work is extremely flexible and can be changed with very little impact, apart from making some time up. If any of that changed, we’d be knackered. Well, more knackered.

I don’t blame SEN parents one bit for not working, so they can get some rest or do the million other things involved.

It’s a luxury not everyone has, not entirely sure what rest is at this point, so if anything I’m a bit jealous!

Depends on the area we have none in mine bit pointless me getting a job out of area because I need to be close in case of emergencies

Well you clearly feel the op has to justify her choices to you with your multiple intrusive questions.

Then reality would hit them fast sen children are not always easy

Ability to work with a child with sen depends a huge amount on whether you can access any childcare, how many appointments you need to attend (we went to 5 last week- employer unhappy) and how intense the care is after your working hours.

People aren't robots and can't work Intensley on one job and then switch to working intensely in another.

And what happens when children don't sleep through the night varies hugely too. From having to do a complex tube feed and administer medicines, plus a full wash down twice a night, to just popping a child back in bed and shshing for a few mins.

But ultimately we both work and still get DLA so I can't see what difference not working woukd make to society for a famiky that made a different choice.

I just wanted to say I understood why your dh cut his hours shorter.
When my send DS was at the height of his struggles I was being beaten black and blue. I had a split lip, black eye and hair missing from where he’d pulled it out.
During the pandemic Dp was let go from a job and took on a few hours in the place he is now. (He’s full time now) but I genuinely needed him home. It was so difficult trying to home school my other dc whilst DS was constantly hitting me or himself, he ended up with stitches in his poor little head he became so distressed one day.
And even after lockdown when DS was at school they wouldn’t have him in some days for more than an hour. I don’t know how I’d have coped with DP being out of the house almost 10 hours a day, 5 days a week.
It sounds all very nice parents being at home together with their child until the perspective of its to stop one being completely beaten black and blue without any respite.

You have my sympathy that you’re made to feel so bad because even now we’ve family or friends who just don’t understand why I don’t throw DS in his room and leave him, “he’ll learn”. He wouldn’t, he’d really injure himself and destroy his and our things. But everyone knows best until they’re the parents in our situation x

I am a single parent and I don’t work due to caring for dd, she’s now 18 and in a SEN placement but I’m constantly having to attend appointments, meetings and she’s often off sick. I struggle to do anything more than a little part time work (dog walking). Most of my family don’t talk to me and one family member in particular calls me a benefit scrounger to my face, tells me I need to find full time work and get stop living off other peoples money. It makes me feel worthless and makes me paranoid that everyone thinks I’m lazy. I am exhausted all the time, I don’t have nice things, my house is falling apart and I have hardly any social life. My life is just caring for dd and trying to hold things together.

I don’t think people realise what being a carer for a disabled child/person is like unless they live it and there will always be stigma around anyone that claims benefits.

Hahaha if they were my in laws they'd be clutching their pearls.

DS almost 6, mainstream, PDA autism and very likely ADHD though only just approaching age of referral. DS also has a 1 to 1 but has been held back in reception as he hasn't got the skillset to do more structured work. He can't even put a pen to paper. This year we've made it to school on time less than 20% of the time, with probably an equal portion of days taken as time off due to school avoidance.

I can't reliably get him into school to get a job while he is there. When I did have a job it made me so stressed as they'd reached their flexible capacity and thought I should just Do Better. It made me really suicidal. Then I left, financially worse odd and feeling so much better.

I have an aunt and uncle who also like to come and benefit bash right in front of me, despite one of them never having worked a day in their life for no medical reason, and claiming benefits. The wheel of luck just keeps landing dependents on them so they have no obligation to even look.

Boggles my mind that people can spout such bollocks despite benefiting from the same system as those in need that in their eyes just need to pull their bootstraps up a bit harder.

I worry about trying to find another job as I can't see me being able to for the foreseeable future and in the distant future I'll have been out of work for so long, I won't have any relevant experience. I worry about taking advantage of the kindness of my family who don't see me as a drain on them at all and are happy to help but I still feel like I'm stuck in this place where it's easy for others to think I'm taking the piss.

You're not alone OP. I dream about setting up an organisation that financially benefits SEN parents and offers flexibility, but I just can't see a way to make it work, but if I could that would be my ultimate goal.

This seems a bit passive aggressive. Why not just come out and say you agree with the in laws.

Edited to add how beautifully this thread illustrates the OP’s point about being judged. In fact, all mothers have been shafted and expected to comply with this patriarchal capitalist insistence that they are lazy / greedy / incompetent if they don't work two full time jobs. With many women rushing to affirm.