To be thinking of giving up work already

[craigth162]

I am in my 40s and have always worked. Mainly ft but 4 days a week for few years when eldest child was young. Im a single parent and youngest child is 3. He is disabled - physically and had behavioural/emotional issues from brain condition. Many hospital stays and countless appointments. Fairly regular surgeries but none since he was just under a year. I went back to work when he was 6 months but only lasted a few weeks as he was not able to be left with childminder and no family to help. Financially we were ok on benefits/disabily payments but i hated it. Child is at nursery now every morning with 1 to 1 support so i managed to get a job working in same industry as before but from home. Basically i work every minute he is in nursery. Its been 3 months and im exhausted. Mentally and physically. So now in a dilemma. I love my job and having money i actually earned. But i never have even 2 minutes to myself. Until the last 3 years id never claimed benefits or relied on others. I didnt have to get a job as child is on highest level disability benefits so i was considered his full time carer.

Child is at nursery now every morning with 1 to 1 support so i managed to get a job working in same industry as before but from home

She is doing remote work.

I feel for you OP. Personally in a similar situation I would have delayed going back to work for a while longer but it's hard to change once you're there doing the work!

That sounds so hard. Do what is best for your mental health OP - you are your son's only carer so you need stay well for him - if that means a few years not working, so be it.

Do you get anything from your work for you apart from pay? If you WFH, is there any social aspect or anything satisfying about the work?

Do whatever you need to do if you can fund it yourself and not myself

I feel exhausted going back to work too with no.2 and don’t have a disabled child! My thoughts are…

1. can you use your holidays by the hour for a bit of time out? Even just an hour or two every other week to get on top of washing/cleaning etc
2. could your employer offer more parental leave than you know about or unpaid time off? Speak to them - if they are a credible employer and want to keep you their HR team may have options. Tell them how you feel, they would probably rather have someone working amazingly 16 hours than struggling and tired doing 21
3. any local charities or support groups you can find for additional help?
4. are there any other time saving methods eg batch cooking you could do to make the rest of life easier albeit a bit boring for now. Even porridge lasts 3 days. Can you turn chores into activities eg counting or colour sorting socks? I clean the bathroom whilst having my shower and do the toilet before bed at night. Wipe round with a micro fibre cloth and throw in the towel wash bag etc. (separate washing baskets has changed my life and bags for socks pegged to the side)

also, how old is your older child and is the father around?

Your work place are legally obligated to consider any flexible working request you put forward. First step is to put that forward. Ask for what you want whether that be shorter days or fewer hours per day. Explain why.
To decline a flexible working request they need to have a very good reason that you can’t do it. Otherwise it’s against the law. They can’t just dismiss it because “we want everyone to work 21 hours”. That won’t fly. I work in a school and 2 of the 4 senior leaders (deputy heads) work 4 day weeks. In what is clearly a full time role.
apply for it, explain your circumstances and there is a good chance you will get what you ask for. As the saying goes - if you don’t ask you don’t get.

I was in a similar situation with my child when he was younger, he is also disabled. His health has improved a bit now he’s 9. Since he was 9m, I have worked his nursery/school hours. I have a younger child too, who is now in school. I also never get a minute to myself, but honestly, the mental torture or not working/having anything for me would be too much I think. I crave a break at times but I don’t think I could cope not working

I would stay at work as you’ll be greatful for connection to other adults in time. I think you’d feel isolated without it and you’re very fortunate to have a supportive employer.

Does your employer have any support for mental health? Mine does and we get sessions with a therapist via phone if needed. Maybe enquire around the benefits to assist you mentally?

Hi,
Parent here of 3 children, one of whom is disabled. I was fortunate enough that when he was younger my husband earned (just) enough so I could stay home. However this came at the price of my husband working away mon-fri. We had to do it because it was the only way. However I found staying at home with my son 24/7 isolating & lonely especially as he displayed quite challenging behaviour. I did however have lots of family help. Anyway fast forward a few years my son started school, once he was settled I got a job in a school too so I could work pretty much the same hours as all my kids because they were in school. At first it was chaos and I didn’t know if I was coming or going, the housework suffered & generally I struggled. I stuck with it as being at the work gave me a ‘break’ in a weird way. Anyway we’re now over a year in, it’s difficult some weeks are trickier than others and some nigh on impossible. But I’m so glad I stuck with it. I would definitely suggest sticking it out a bit longer once you find your feet you might be glad you did, in the meantime it wouldn’t harm to keep an eye out for other jobs that you think are more suitable.

Thanks for reply. Older boy is 14. He is a great help and splits his time 50/50 between here and his dads. He has a busy life between school, plays for football team, volunteer coaches younger kids football etc but when hes here hes amazing. I try not to put too much on him.

Younger ones dad is not involved at all by his own choice. We split when i was pregnant and he wants nothing to do with a disabled child. Has never met him and when i msgd him photos and update he merely repsonded with thumbs up.

I love my job and wouldnt find a better team/company. Im just so tired.

They do have support but honestly i think if i tried to talk to someone id have a breakdown and i cant do that

as you can see from the responses, most posters haven't got a clue what it's like to combine work with caring for a disabled child.

Also, once he starts school thing will not get easier for parents of disabled children? there is next to no childcare that will take our kids. you will be basically shafted for 13 weeks annually.

Just do what feels right for you. if that is giving up work, do it. You do not need permission from MN mums (who largely appear to not know what it involves to bring up a disabled child).

Do what is best for you and your MH OP. For some friends that's working to have that distraction/attachment to something else (1 has a specialist nanny but obviously that costs). For others that's not working.

Do you have any charities nearby which offer restbite support? Even a few hours a month could make the world of difference to you.

Hi, I think from your description your child has the same disability as mine.
There was no way I would have managed to go back to work when she was 3.
Now that she’s at school I have found a part-time job and I’m struggling hard even though it’s super flexible with lots of working from home.
She doesn’t sleep well, and her behaviour is exhausting. I just don’t function properly anymore.
I don’t have the answer, but sending solidarity!
Lots of great advice here: https://workingfamilies.org.uk/article-categories/caring-for-adults-and-disabled-children/

Apologies as not read it all but could you not get some respite care, maybe overnight, even if only once or twice a month to give you a small break.

@Bloomingpasswords respite is almost non existent and extremely hard to access. I have 2 with SN. the oldest is almost 16 and severely disabled. Respite has been refused at every attempt. it's just not as easy as saying you don't cope.

Caring for such a profoundly disabled child is HARD OP and YADNBU for being exhausted. You being your sons carer is actually saving the state far more than your benefits would cost.
However giving up work completely you lose your employer contribution to pension also what happens when your son is an adult and gains independence and/or moves into an assisted living facility? Your benefits will reduce dramatically.

You definitely must get maintenance from your son's dad its not a choice for him to be involved. The child is his he's Legally and morally obligated to pay.

Other than that consider all other factors carefully, maybe even part time working is better than nothing.

The alternative to not speaking to someone is also a possible breakdown. Therefore what have you got to lose?

Take another couple of years off, But also do something productive with your free time like a 6 month training course that will make getting back into the workplace easier / further your career / enable you to get a higher wage, you will unlikely have the time to do this in the future so this is your chance

Claiming carers allowance means contributions to NI are made. Also who is to say your child will leave home as an adult, I have a son with ASD and he lives with me still at the age of 32. I wouldn’t dream of putting him into assisted living while he has a perfectly good home with me. My advice would be to give up work for the time being and revisit the situation in the future if things change. You need to look after yourself to care for your child.

Younger ones dad is not involved at all by his own choice. We split when i was pregnant and he wants nothing to do with a disabled child. Has never met him and when i msgd him photos and update he merely repsonded with thumbs up.

God, I'm sorry, what a total arsehole

Is it affordable to stop work until he’s a bit older but keep a day of nursery to give you some space/time to yourself? I think personally, the fear that the shunt may last two weeks may last another year and then could be life threatening to my 3yo would make me not want to work but spend as much time with him as possible, granted you need some time to yourself so keep a nursery day if you can afford it for your sanity but I would give up work for the time being just to make as many memories as possible encase of the worse.

The emotional strain of everything with his health you have to deal with sounds knackering let alone everything else you have to deal with as a single mother, it’s hard enough without disabilities brought into the picture, you’re doing amazing and need to give yourself some slack.

How old are the other children? Can they help out a bit more? Does the dad or dads have any involvement? Just thinking of additional support that might be around the corner.

You’re amazing for everything you’re doing and what you’ve been through, you’ll make the right decision.

Does anyone know what the deleted post said? Missed it an now nosy

Hes on list for respite but realistically will be years of a wait if he gets it at all