To give up full time work to care for my DS?

[lrp]

Currently work full time in the finance industry. Awaiting a diagnosis for my 4 year son, highly suspected to be autistic but not officially confirmed yet.

Have applied for DLA but still waiting to hear if he has been awarded. Working full time and being there for him also is proving so difficult. I feel split into two and I'm wearing myself extremely thin.

Have mentioned to DH about giving up work but I've worked since I was 16 and I've never applied for any benefits before so I feel a bit anxious about the thought of giving it all up, however I feel this will be inevitable tbh in the future the way things are going. DH is not a high earner (around £21k) so not sure how much this would affect if I did claim.

Any experiences please? Is there anything I haven't thought of?

Assuming you're the higher earner it makes more sense for your DH to give up paid work.

Agree. Or both reduce hours and share.

is he at school?

Might your organisation offer a career break so you can focus on the diagnosis and put plans in place for the right school and other needs? Leaving completely might feel rash when you look back on it later. Fingers crossed the support will be put in place and you'd just be kicking your heels during school hours.

I gave up work last year to care for my 10yo ds2 who was diagnosed with ASD at 4yo. It was becoming too stressful and demanding, and I feel that I made the right decision.

But. But. But. I would 100% encourage anyone to stay in the workplace if they can. Is there anything you could try as a half way house eg a sabbatical, part time, working from home for some days etc. Ciuld you move sideways in your organisation to do this, if you could t in your current role? Would parental leave/short sabbatical give you some breathing space, time to take stock, a ‘rest’ and then think fresh?

There are some statistics that parents (usually mums) with children with disabilities are far less likely to work outside the home than those without. And also statistics that say that marriages of parents with children with disabilities are more likely to break down than those without. So a lot to think about there. And it is important to put yourself first sometimes (easier said than done).

You could also (subject to assessment) claim for carers allowance which is about £70 per week.

@SusiePevensie I don't earn more than him. I earn around £20k as I do different shift than everybody else at my work so it's pro rata

It sounds to me like you don’t really want to not work. And I’m guessing your husbands salary is not more than yours?

Personally, I think not working is a bad choice for most people. My partner and I both work part time for this reason.

I'd love to take a sabbatical from work, however it's just not an option unfortunately but at the moment it's such a struggle, I'm just not sure where to go from here. The thought of being out of the workplace for potentially many years makes me feel unsure but I need to be there for DS as much as possible.

I don’t work so I can care for my child (although if something during school hours comes up I’ll jump at it). They need me to be there in the morning and at the gates after school. It’s a sacrifice but it’s for the best at the moment.

What about taking parental leave, as a short break from work for you? It’s unpaid, but if you’re thinking of leaving anyway, you’ve got nothing to lose by requesting it.

@WellTidy I couldn't afford to take unpaid leave

but you will be unpaid if you leave?

I gave up work to care for my son and it was the right decision for me. It felt like a weight lifted off my shoulders. I've returned to work now my son is an older teen.

If you give up your job, you will give up your income. Parental/unpaid leave would buy you time and space to think and breathe.

@WellTidy I believe we would be eligible for universal credits if I gave up work so I would have some money coming in. I meant I couldn't afford to take unpaid leave right now

Can you look on entitled to and see how much tax credits/ universal credit you would get? I'm not sure the rules if only one if you is working though.

Will your DS be going to school?

Are you in a position to buy in some respite/childcare? I remember how hard it was to think and reason clearly when I was in your position. Between the constant demands and the sheer exhaustion, it was a really tough time.

@Pate101 I've had a quick look. However it's difficult to estimate as don't know what DLA rate DS would get (if he gets it at all). From what I have looked at I would be entitled. If he got high rate DLA I would get what I earn now per month that's if it is accurate

Hi OP. I’m the mother of a disabled child. She’s five. Disabled physically very severely and is tube fed, susceptible to sudden illness and is non verbal.
I gave up work after she was born.
My DH earns around £30,000.
I get Carer’s Allowance and she gets DLA (which obviously is used as household income for clothes, nappies etc).
I am desperate to get back into work but can’t.
my DD has 4-5 medical appointments per month.
I can’t get back into work.
I had no choice but to be where I am.
I would 100 percent recommend you try everything possible to stay working in some capacity.
Carer’s Allowance allows you to earn some income.
DLA is not means tested.
Getting CA or DLA won’t affect your DH’s income.
I hope that helps

Do you work for a large or a small company? If large have a chat to HR, do they have a carers policy for example. As a Carer you are entitled to unpaid leave which may give you some additional breathing space.
Have a look at Entitledto.com and run some figures though it. It should give you a rough idea of any help you maybe entitled to, although I suspect it will depend on whether he is gets awarded DLA.
I gave up work to care for DD, I tried to work a few times but it all just got too much for me. But it did affect my self worth and I felt very resentful towards DH who got to skip out the door to work every day. I got very anxious and felt like I was doing both my work and looking after DD badly as I wasn't able to give either my full attention. She is a bit older now and things are more stable. I am working part time and I honestly love it.

Also meant to say, we struggle financially

I would try to stay in the workplace if you possibly can. I have a young child with Down syndrome, I work part time in a professional role and it helps keep me sane in all honesty! I did have to drop down a work grade in order to go part time but it’s been worth it for me and my family. I won’t lie, it’s not easy juggling everything and life is very very full on but those few days a week I’m working remind me that I’m more than just “mum” and a carer to my son (also, I worked hard for my career and don’t want to give that up or lose my financial independence)

Haven’t rtft but if you own your home or mortgage it’s unlikely you’d get help with 1 dc and a couple :(

And were it not for other income (previous house sale and family business income) we’d really be struggling

also your employer might have a flexible working policy - I’m currently temporarily part time. I still have a full time contract though, which I can go back to with 1 months notice. Legally they need to consider this (although they don’t need to accept it - but they need good reason as to why they can’t accept)