Has anyone on here with a severely disabled child ever managed to work full time?

[saintlydamemrsturnip]

Because after two and a half years of it I have got to the stage where I feel I have lost the plot trying to balance everything.

My work is very flexible. It would have to be - I have to be home for ds1's bus (then go back to work when ge is asleep) and I can never sort out enough childcare in holidays (this half term us typical - he has two days at playscheme so I have 2 days for work).

And yet even with this flexibility I feel everything is piling up on top of me. I need an extra 12 hours in each day.

So if you manage it, how? Share the secret please!

I did manage it a few years ago with 2 SN dc's plus an NT dc, but it was when I was living with my DP (aren't living together now) and we (very carefully) organised our shifts around each other, almost like ships passing in the night, he worked days, I worked nights. Both days-no bloody waay.

Can't imagine finding a nanny daft enough wiling to look after two asd dc's either...

Yeah dh works long hours (days) so can't really help out.

Theoretically I have money to pay someone (direct payments) but struggle to find anyone who can cope with ds1. My mum can but she works full time and thre are two others who can - but they both work full time as well. Ds2 and ds3 have a good after school club attached to their school so they're no problem.

Oh well sounds like it's not just me. I shall spend the next 8 months cracking up until current work finishes and then never work full time again I think.

I am about to give in and try to find a nanny. can't see how else I'd manage either re-training (sorely needed) or any kind of work...

I had a career [sigh]

I could not have gone back. Even if I could have managed the hours I know ( in my personal circumstances) that DS2 would have suffered without one of us providing real stability/continuity of care.

We had the chat but it made most sense to both of us for me to stop.

I am glad now as it is best for our family as a whole. But it still constitutes a sacrifice.

that's my main worry, pagwatch - that dd1 will suffer if we do get a nanny.

we're going to try it, and see how it goes.

but yes, otherwise down to sacrifice (or very part time work...)

My problem is we need the money. It would be much better for us all if I could be at home but it's not financially viable.

I have discovered I simply cannot work for anyone else as I have to be able to choose my hours of work (currently I am responsible 99% to me which is why I've been able to stagger on). I will apply for some part time research funding but am not holding my breath. I am also setting up 2 small businesses (one pet sitting which is up and running in a small scale and works quite well) and one making video montages which should be up and running soon.

I feel like running away really though.

I have always worked fulltime with a severely disabled son.It was very hard,he is 21 and many doors closed in my face once I explained that he was severely disabled,no mincing of words.No dla or anything at all to help.I worked from when he was about 5 months old.I really struggled through.I think things are much easier now,with a more enlightened attitude and also dla and direct payments must really help.
My advice is to get a sympathetic social worker on your side and a Carers Assessment that stipulates that you want to work.Can I really recommend the organisation waving not drowning which has a newsletter for parents of disabled children who work or who want to work.Telephone 020 7253 6253.
Good Luck!

saintlydame, I'm sorry things are crap. I think you manage everything amazingly but you shouldn't feel bad about everything getting on top of you. If I ever stop for long enough, and think of everything I need to do but haven't, I feel like I might just get into bed and never get up.

I do work full-time, but, as a teacher, my version of a full-time job is different to others'!

I take J to school in the morning but finish just later than him at night, so I pay a relative to pick him up and take him to my house. She used to be a childcare worker and is very good with him, but v expensive. 2 days a week, SS pay for a play worker to pick him up and take him to activities. Then obviously school holidays are easy as we have the same holidays. I couldn't do any other full-time job.

I agree with jardy about carers' assessment. There is a document I saw a while back about being entitled to help if you want to work but I take your point about having the direct payments but being unable to access the right type of childcare. Can someone be trained up? Or could 2 people manage ds1 between them?

I hope things improve. It must be very difficult and I don't think it is just you at all.

NO & I have had to gradually reduce my hours over the last few yrs to get the flexibility I need.
I can only work because of my very flexible employer & the last time I reduced my hrs I was able to negotiate a pay freeze to cushion the financial blow.

It took me a long while to realise that I really couldn't keep trying to do it all.

Please be careful Saintly, I was ill & ended up having 4 months off before I accepted what everyone had been trying to tell me for yrs - That I was doing too much.

When I look back I can see that I actually wasn't doing anything that well as I was trying to juggle too many balls.

Can you take a little time off to recharge your batteries & give yourself a little thinking time? Sometimes there is a solution you just may be too busy to see it IYKWIM can you get any additional respite?

Thank you for your advice all. We get a pretty good deal from SS tbh. I don't think we'd get much more. I've found people can't really be trained with ds1 they can either cope or can't and it just adds another layer of stress.

I think you are right anon - it can't go on like this as there aren't enough hours in the day. I think the answer is to struggle through to the end of the current work then ensure that I only work part time from then on. 2 or 3 days would be doable providing it's flexible. Knowing there is an end in sight helps.

Thanks for the waving not drowning tip as well. I'll look them up.

Awful as it sounds it's sort of a relief to find out it is hard and not just me being useless.

TBH fulltime work with children is hard, with a disabled child its much harder... don't be hard on yourself just look at what you have achieved & look forward to giving yourself a well earned break!

Now was that me or my counsellor talking

You're so not useless. I think everyone struggles for various reasons at different times but I know that I cope a lot less with with everything J-related in term time, not just because he's at school but because I'm at work. I do get mega-stressed and smoke loads and stay up late and it's not at all healthy. In holidays, I really notice the difference. So I know that working full-time is very hard and I think I can only do it cos there's an end in sight so frequently (every 6 weeks or so) but I couldn't otherwise.

lol @ counsellor speak. Yes I think it would be hard enough with just ds2 and ds3, ds1 just makes it impossible

I thought I would be able to work full intense 2 or 3 days a week during holidays (when ds1 is at holiday club) but what actually happens is I pass out exhausted from the rest of the week of looking after him.

The problem is I need my brain for the research work (especially for writing which I am trying to do now and find hard enough anyway) and that just leaves my body as soon as I hit holidays/have a few 3am starts on the trot (as we did last week, is it full moon soon or something?)

This is a subject of great debate in our household atm. Up til Sept I was in the lucky position of not having to work, but then Dh was made redundant and everything changed. He's now looking to go back into teaching, but this will mean a large pay cut - so now I have to work. And it is SO difficult to find something that fits around DS2. Atm I am doing 10 hours a week as an HLTA, which is fine as I earn just under the threshold for carers allowance and Dh is still getting redundancy pay but it won't be enough long term.
We don't get enough DPs to pay for school pick-up every day, which we'd need if I went back into teaching full time.

No, I work about 10 hours a week - and DD isn't even that disabled!!
However, no chance of holiday care (unless I pay a lot of money for it, and I don't earn enough for that). Can't even get after school club to take her so I have to be home in time to pick her up from school (and my work is about 1.5 hours away). It's all a bit mad really, but I do feel SO much better for a bit of distance / something else to do during the week. It can be a bit all-consuming otherwise!
However, I don't think I could do full-time (even if there were childcare) because I'm running on empty half the time anyway. AND I usually get enough sleep, which really is half the battle. And your job needs your brain to be in gear - can't be easy! (I mainly do documentation and translation - not that challenging, really, unless the translation is a real pig!)

Brioche - I think you sum up how I feel. It's lack of access to childcare that is one problem but the actual act of trying to deal with everything that is so hard. As anon said earlier I don't think I do a great job at anything at the moment.

Good luck sphil - feel free to bounce ideas. It is hard.

Now people look at me as if I'm mad but the lack of intense brain power needed is why I like pet sitting. I have some regulars now (cats) who are lovely and I actually really enjoy having time out to go and sit with them - they get to know me and most are friendly. It only needs juggling during school holidays, otherwise fits in easily and the juggling is do-able. When I've finished the current work one option would be to add on dog walking. Although that would be harder to juggle during school holidays. I like being out and about as well. I do a lot of my current work from the kitchen table - which has lots of advantages - cut the commute time out of an already short day - but isn't that good for mind/body/soul

I know exactly what you mean, even if dh packed up work tomorrow I still don't know if I have the mental capacity & physical/mental strength to work full time.

DH is perfectly capable of being a childcare provider & is a very good Dad BUT I ahve always been the carer.
How could dh suddenly step in & go to all the appnts, discuss things with ds2's teacher. Not becuase he wouldn't be willing but he just doesn't have the history, for the past 7 yrs dh has been working or looking after ds1 while I have been dealing with all ds2's stuff.
Most of it isn't written down, its in my head. Even if dh did take over I would find it very hard to give up that control.
Not sure if all that makes sense... but its convinced dh for the past few yrs that he needs to be the full time worker

It IS extremely hard.You do have to work out whether it is worth it on every level.
If you do work ft with a severely disabled child then you need to be prepared for the huge stresses along the way such as unable to arrange child care.My mum said if you chuck enough money at someone been willing to take care of him after and before school then you are likely to find someone.I did and it worked for a while.
I think you need to culitivate a friendship with someone,who would be prepared to do this,but it needs to be someone you could really trust.
For what it is worth,I am glad I did persevere.
Things did get easier as he got older.The biggest help was the change in attitude from society.I ring the respite place if I am stuck for the odd hour now and they will help,or I just explain to my boss my child care arrangements have broken down and it is ok.

To be honest I think that's the problem - it's not worth it (for me) and that's something I've come to realise. I thought it would be a lot easier than it has turned out to be because I thought that as ds2 and ds3 got older it would get easier (which it has in way) but I didn't figure on ds1 getting so much harder as he gets older.

We need me to earn some money, but we could get by with me on a part time wage (in fact my full time work is providing a part time wage so it's the worst of both worlds from that pov lol). Part time work would give me something else away from severe autism for a bit (which I think is really helpful) but would still give me the time to do what I want to do with the kids and some time to sort the house out/keep up to date with paperwork - I won't even tell you how far behind I am on direct payment returns - and just do something other than feel guilty every time I'm not working.

My immediate boss is lovely and very understanding. My official boss doesn't have a clue - he just sent me something suggesting I go away for a week (with work - residential) during the summer holidays. Yeah right.

saintly,my heart goes out to you.I have been there.I think there is probably massive differences between you and me that make work for me easier.You do sound as tho your sense of humour is intact!
I kept wanting to pack in my job and my immediate boss kept telling me to make Life easier for myself instead eg as much domestic help as I could afford.The clue lies in your line My immediate boss is lovely and very understanding.If you were not very good at your job and valued she would not say those things.It would be easier for her to say that the pressures at home are so great that it is having an impact on your work.
You also say,I won`t tell you how far behind I am on direct payment returns.I felt like that and then I went to Staples and got really organised with a file,dividers and a wall calendar to write on when paperwork was due.
The fact that you do DP (some refuse,too much hassle) indicates that you are very capable.
Putting all these things together I think you should come up with a plan to help you to continue to work,for the time being.Then after say 12 months you can reevaluate things.
I used to get so low I would write my resignation letter,but I am really glad now that I carried on.It would not work for everyone but it definatly did for me.
Stay strong,you are not alone,others are feeling like you.It would be a shame to give up your job in the current economic climate because of what might be a temporary blip.
You could be exchanging one set of problems for another eg cabin fever and financial problems!

My sense of humour is black

I do have to finish this job in September anyway as funding runs out. My immediate (lovely) boss wants me to apply for some more. I have said I will but only part time. I'm not sure how realistic part time funding is though. That's on the list of things to do.

Now today is one of my work days this week as ds1 has a playscheme 10-4. I have been up since 3am with him. Again. I know lots of parents of babies work on little sleep but they haven't usually had 10 years of limited sleep :violins please: with no holidays because of course we don't get holidays do we :more violins please: and this is where I find the need for a brain to do this work a problem.