I am thinking about stopping work to care for my son

[Ronifromwales]

Hi all

I'm new to mumsnet and will benefit from the wise opinions from any willing parent or carer out there.

I work full time and I have got a 4 yr old son who is in the autistic spectrum (not diagnosed yet) in full time education at our local school special needs unit. He has got a statement of special needs and the education side of things is being catered for. However (and obviously) his statement clearly says that his intervention will need to be complemented at home and although my husband does the school run and looks after them at home after school, I feel that he is often too tired to do any more with the kids and they end up in front of the tv until I get home at about 5.30pm (I leave home sometimes without saying goodbye to them which is very sad).

My husband is a minister locally and has also got a full diary, including occasional conferences and trips and I have got a full on job which is not very flexible. They allow me to attend doctors appointments but have refused to grant me 4 day-a-week contract, to allow me 1 day to catch up on things. I have got to attend doctors apps, school meetings and fit in food shopping, ironing, housework and church at the weekends, plus events organised by church on saturdays and visitors as part of my husband's community work. This means more tv for the kids and my not being able to give them any attention or support and dictating to my husband (who has got a more flexible diary) what to do with them when I'm not there.

My son doesn't join two words, he can't dress himself, he doesn't use cutlery very well, he doesn't drink from a cup without eventually tipping it and he is not potty trained. Now that he has started full time school I can see that he is starting to use the fork better because they are teaching him. Most of the time, I'm too tired to bother and end up giving him a beaker and letting him get on with eating with his hands because I'm in the middle of housework or dressing him myself because I'm in a hurry to get to the supermarket. many times he comes to me with a desire to communicate and I can't because I'm doing something else.. I push him away and only notice what I've done later on... My life has been hell, I have no time for myself or the kids because work has taken over my life. If I work part time, I won't be eligible for the carers allowance, which is 400 a month or as much tax credits (my son received mid rate disability allowance). the point is, if I stop working I will as worse off as if I work part time as I won't have any benefits but I will still have to fit housework in outside working hours. I'm at breaking point :(

As my son is showing signs of improvement, I feel that I could benefit from two years at home to crack on with the programme and to help him to acquire self help skills, instead of just trusting the school or my husband to do it. The school doesn't put any pressure on us, it's like they know we can't do much for him and they just get on with it which makes me feel awful. They did mention that I would benefit from coming to collect him sometimes but work doesn't allow that either. I'm his mum, for goodness sakes... :(

Financially we will need to go on the debt management scheme and get rid of luxuries such as holidays, sky tv and posh phone contracts. I can't live with the guilt of not ever being there for them, never taking them to school or picking them up! not doing my daughter's hair in the morning and her telling me that she will get up at 6.30pm so that I can do her hair. I want to be there for my son and daughter at this time of need. What I have now is 35 hours a work a week and 15 hours with the kids if I'm lucky. This is not life!

Have any of you been through this? I would appreciate some advice and support. It's very scary to go through such a dramatic change and I'm not sure whether the carers allowance will apply to me if I give up work but two parents working full time is terrible when you've got a child with severe learning difficulties and lack of self help skills... :(

You'd definitely get carer's if you give up work, if that helps at all

tax credits will depend on your DH's income, so they might go up, obviously that depends on what you get now and what his income is - do you get the disabled child element of tax credits as well? Just in case you've missed out on it.

My DS has AS and functions pretty well really (he's in that bracket of children that needs more support than an NT child, but not so much that I have to do anything like the amount you are) but...DP works really long hours, with overnight stays, I trained as a teacher after the DCs started school and realised just as I was about to qualify that there was absolutely no way I was going to cope with the workload of a new teacher with DS still at home and didn't finish it.

It was a bit :( and I'm now finishing a completely useless degree, lol - but putting it off (I refuse to completely give up on it in my head at least, lol) was absolutely definitely what I needed to do.

You can earn up to £100 a week and also claim Carers Allowance if your son is in receipt of DLA middle rate of higher rate care and you care for 35 hours. Check the current earnings figure on directgov website. I think it is important to keep one foot in the workplace, it can be very isolating being a Carer. I became a Carer after I realised that I was so sleep deprived I just could not concentrate on my joband my son needed me. Yes as a Carer you will have more time to help your son but you may be kidding yourself that you can get back into the workforce and get a job in two years time. Whilst Carers have someprotection under the Equality ACt in recruitment it can be subtle discrimination with people assuming you will be taking time off to go to health appointments etc. Many carers do combine caring with some further study e.g. OU but there is a limit on the number of hours a week you can study and combine with Caring. Yes you will have much less money when you give up work. You will also lose the contributions to any occupational pension scheme. My ex could not cope with this lifestyle and baled out. Looking back if it had not been for the dire sleep deprivation I think the best route would be to work partime say 3 days a week and not claim the paltry Carers allowance but you have said part time work is not an option with your employer. Can you start applying for part time positions with other employers whilst you are still in work. ? A good website is workingfamilies.org.uk (ggogle it)with advice for combining work with caring

Carers allowance is not £400 a month , more like half that I think it is £55 a week check the exact figure on directgov

Not sure what job you do. I worked for a cahrity and they were very good to me. I was able to take a year sabbatical unpaid and then do part time. Can you negotiate an upaid sabbatical year?

I meant charity

I would go for it if I were you. As your husband is a Minister you already know that money is not the be all. I am sure you could qualify for carer's allowance and I would think that your son will benefit from having more of you.

I worked full pelt when my eldest son (now 21) was little and I really regret it. I now work self employed from home, probably 10 hours a week. But I really make those 10 hours count.

My youngest son has learning difficulties and he is now 12. When he was young they were really severe, I have spent a lot of time with him and he has progressed so much. I changed my working practices when I realised there was something "wrong" with him.

It is worth it to cut off the Sky package, the mobile phones (remember phone boxes) money isn't everything. Give up work, take a step back and be with your kids.

I gave up work to stay home with DS2, and I don't regret it. It has meant that finances needed to be adjusted. There are TONS of ways to save money - check out moneysavingexpert for more info on that, especially the Old Style part of the board. If you shop carefully, you can get good mobile contracts cheaply - DH & I both have Virgin contract phones for about £11 per month and basically can ring each other (or anyone else on Virgin including our DD) unlimited minutes. If you ring Sky and tell them you want to cancel, often they will offer you 6 months at a reduced rate, then you can get a cheaper rate for 6 months, and then cancel if you still need to. Or look around for cheaper services than Sky.

I agree, money isn't everything. Enough to pay the bills is good, obviously, but the children are only young once.

Giving up work saves on money on other things - travel costs, clothes, lunches. Try adding those up and give yourself that incentive. I would get a part time job just to keep your sanity though - and you can earn a certain amount before you lose CA. There are lots of support groups for autism families and you will have time to benefit from those.

You can't be turning your son away when he wants to communicate - that should be your warning light to stop work.

I agree that if your work allows you to take a year sabbatical, that would be ideal. It then gives you a year off with your son, plus the option of going back (or negotiating going back with a revised schedule) in a year if the finances prove to be too much of a struggle.

I gave up work last may, as it was just too much in the end. I still do some freelance work now and again.
You will get £55 carers and I'm sure ctc gives £1200 to any child with DLA.

If you can afford to do I think you should, clearly he needs you at home to help him. Tv is a terrible babysitter and can quickly become an obbession in our house

Poor you. I undertand your feelings.

Great advice from everyone else and yes, I am sure your ds would beneift from having you at home for the next couple of years.

Good luck
x

I totally understand where you are coming from Roni. It's a full time job caring for a child with SN and I also found I could only manage it properly without working. I cope quite well financially on Carer's and DLA, we still have holidays and mobile phones, just not the most flashy ones.

I still get quite a lot of adult contact through things like voluntary work and p/t study/gym - would never have the time to do all that if I was working, but it helps keep me sane and I always fit it in during school hours. I spend lots of time with the children when they get home from school, doing additional therapies and taking them to activities which I think benefits them more than the extra money I'd get from working.

It's worth calling an organisation like Contact A Family or NAS as they can help you sort out your benefits/tax credits to make sure you're getting everything you're entitled to.

tabulahrasa- thank you so much for your advice, I am a qualified teacher but originally from Brazil and since moving permanently to the UK I started doing research assistance work and I'm now a PA in the local university. My actual degree is not being used anyway as I could not do a PGCE due to my husband's studies when I first moved here... babies came and the rest is history...

zebrafinch- I have decided that I will let work know that I am thinking of giving up work. the only thing that could work for me would be to work 2.5 days a week, term-time only. I don't think they will offer me that but I can always register with the local university temporary job agency, just to keep in touch with the job market and earn a little bit of extra money, when I can do it. I've now checked the rate for carers allowance and you're right. thanks! :)

whatever117 and Triggles- when people told me how hard it would be financially when you marry a minister I didn't believe them and I thought, well, I can work. you never know what life will throw at you but I have always fully supported him and we've got a strong relationship which helps. we might need to go into the debt management scheme as there is no way we will be able to keep up with our debt payment with me earning about 200 carers allowance and not that much in tax credits,... the university I work for can give up to two years career break. I didn't know whether that would still entitle me to benefits, as I would be still employed.

realhousewife- I thought about writing in this community when I received my last letter from the SLT centre, advising me that I would be needed several occasions throughout the year for formal assessments now that he is in full time school. This shows they're doing a good job in keeping up with his statement. They also said that they'd be sending exercises home.

DS has got gluten intolerance and we've put him on a gluten/casein free diet and that means cooking from scratch and more work preparing packed lunches. I've been going to bed at midnight most of the days...

He bites off his clothes (colar and around the wrist) and I was offered occupational therapy for him which I said I couldnt' do because it was every two weeks at the local hospital. He will be seeing the dietician now every month too. There is paediatrician, consultant allergist, ENT specialist, HV, and my other daughter needs me to.

SLT invited me to take part in the HANEN programme (it takes two to talk) I couldnt' go (sixs weeks, half a day a week).I can't keep carrying on saying no to everythign that is being offered to me but can't force work to say yes to my every request... :(

lisad123- Thanks for this useful advice. what do you mean by? I'm sure ctc gives £1200 to any child with DLA. my ds only gets 200 dla and we get child benefit, that's it.

Becaroooo, littlefirefly and everyone else - thanks for your support and advice. I have nearly made up my mind to stop working now. I'll have to talk to my director and see how things go. I will keep you all posted. Sorry for the essay but nice to know so many people care. I'm in tears as I've had such a good response on this.

I'm currently on a one year unpaid (nhs) career break, it's a way of keeping my job open whilst seeing how we manage financially etc. If you work for a university do they have a similar scheme? The criteria for getting it did include caring.

There is also unpaid parental leave which you are entitled to take and would give you more time at home whilst remaining in work. I think it's a about 13 weeks in total you can take it up to age 18 for a disabled child.

You should also investigate your tax credit situation and see if you can get some especially if you give up work. Good luck .

Taking a sabbatical from work wouldn't stop you applying for carer's because you're employed - it's actual income that's counted.

Child tax credits do a disabled child element if your child is on middle or high rate DLA - it's more than £1200 a year now though, you need to tell tax credits that you have a child receiving DLA.

My degree's not completely useless in that - I think it was worth doing for it's own sake and I've managed to do that because to a certain extent it's flexible and I could do a lot of it during school hours, but when it came to teaching placements, I got 8 weeks into my last one and I just felt like I was not actually managing to do anything well enough, school or my DC, something had to give... I was running myself ragged, not doing school as well as I should be and short-changing the DC.

Because it still had 2 weeks to go I'm now making up the credits with my main subject and then I'll be looking for a job that's more suited to my situation - I do regret giving it up in a, it was for me and I wanted it way, but I definitely think it was the right thing to do for all of us and I get much more sleep now, rofl.

Ronifromwales - it sounds like you have thought through this and got lots of good advice. I have been struggling with the same issue for years now but when I actually stopped (luckily it was unpaid leave and I didn't quit altogether) I
ended up being very unhappy, since I sort of lost my identity and was so unbalanced and impatient that I wasn't a good mother either. I am now working
part-time and while it has many downsides (financially, and yes - you end up doing the housework with the children around, but I can often include them,
because things are more relaxed and I do have time to play/practise with them) it works better for me than the alternatives. Hope you find the right balance for you.

vjg13 and tabulahrasa- I am doing Administrative work and they said that I am not eligible to apply for a career break, but I will be talking this through with HR soon.

Glimmer- I feel I really need a break at the moment, to think things through and to do all the courses and workshops that are provided so that I can build a relationship with my son. At the moment if you leave me in a room with him, I don't know what to do and this is so bad. A few years ago I wanted to progress in my career and I was even offered a management position within my organisation. I refused to take it because things have changed since my son was born. I want to feel, in a couple of years, that I've done the best thing for him. I don't want not to work but to focus my strength in areas of interest so that I can help my son. I know what you mean by feeling stressed out and lack of identity. I am scared stiff of going into the full time mum world... especially because it will be a shock to many people. They have always seen me as this high power working mum... I will do this by faith and see what happens.

I have now resigned. Spoke to line manager this am. Please tell me that I will be ok. :(

by the way, my line manager said that I can always register with the local university temp agency, they will give me a glowing reference and I can do bits and pieces every now and then, which is great!

Well done for taking the plunge, Roni. I think sometimes not working can be isolating as there is less structure, but with the courses and workshops you should be able to build up a support network. I think you shouldn't just see yourself as a full time mum (not that there is anything wrong with that!) but I think a FT carer is more demanding as it is much more complex. I found that it was quite empowering to focus on DS's needs and therapies, there is so much to learn and it's definitely a challenge.

Roni - you will be okay! Honestly!! It's scary (I was terrified of losing that safety net of income), but you learn to adapt. And think of all that time you will be able to invest in your son's future, as well as your own (because you will learn so much about yourself and what you can do - it will make you grow as a person if you let it).

breathe breathe... it'll all be okay....

Just seen this thread, Roni it will all be okay.

I gave up work because of similar reasons (DS with ASD aged 4 at the time he had no official dx, no statement, lots of troubling behaviours, etc) and he is now 7, I am going to be returning to work in the next month or so hopefully (waiting for a start date). We have survived well on carer's and DLA, cutting out all unnecessary bills and spending carefully. We haven't lived the life of riley but I have been here for DS and that's what's important. He is now settled in his school with a 1:1, has official dx, has salt at school, I have attended NAS courses like Help! and Earlybird, and feel he has really come on. Still haven't cracked the toilet training though!

In terms of money the moneysavingexpert website is great for debt advice, budgeting, benefit entitlement, etc. I've had loads of help from there and here the last few years. You can definitely claim carer's, the CTC disabled element I think depends on the levels of DLA you get - definitely worth checking out.

It's so reassuring to hear that. I've been seeking support from everyone as if I need the whole world to tell me that I've done the right thing when I KNOW that it is the right thing at the moment...

I haven't slept before 2 am since Monday but hopefully things will calm down a bit when the news wear off a bit at work. My director was gutted which made me realise how much they appreciate what I do and she said that I would be the same at home. I am honestly scared stiff that I will be rubbish because the thought of staying at home full time is very surreal and daunting.

I have seen that there is a group here which does special needs activities (Cardiff) called Rebounders and I will get ds to join and will try and have some structure in my week, day for shopping, day for gym (if I can afford to keep it, I will try for my sanity), when I do housework, time for dd as well who is in mainstream education and needs my attention too etc. I have to have structure and to know where things fit... and I need a set routine in order to function and the thought of having a lump of time thrown at me is quite scary... has anyone felt the same? it's ridiculous isn't it?

Keeping things in your week that are for you is very wise IMO. I have kept up to date with my working world by doing various courses while I've been at home for my DS. Is this something you could do? Depends on the field you work in but one off conferences, OU courses, an evening course one night a week, anything really that will give you a bit of time and space for your own interests.

The local activity group for DS sounds like a good idea. Do you have a local NAS group in your area? Or any other special needs or disability support groups in your area? Well worth looking into both for activities for your DS and also for your own contacts and support network.

I was very scared when I quit work but felt I had no choice really, I don't regret it for a second though. HTH

Ahh, WhoWhoWhoWho,thanks for that... being in full time work never really allowed me to see what's out there so my answer regarding NAS is I haven't got a clue!

I enrolled ds in so many non-special need friendly activities such as gym, swimmming and even pre-school music lessons and it didn't work. I know though that he looooves the drums and he's got such a rythm. I caught him playing it like a pro in church last Sunday, he played all the different bits of the drum and was fixated when it was being played during the song. I will have time now to look at what is good for him rather than trying to make him fit in the same activities as my dd. I'm soooo tired, I can't wait to sleep this off :c(

My DS has swimming lessons with a local swim school who do 1:1 lessons fairly reasonably, and the instructor is great with DS, he has loads of experience and it shows. I found out about these through word of mouth, other parents in your area with kids on the spectrum are great for contacts and recommendations and tricks of the trade. I view it like professional networking as well as support. It's well worth searching around for things like this when you have more time and energy.

You are going into a complete lifestyle change, give yourself a little time to adjust - and to sleep.

My DS likes the drums too.