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!

You're hardly a whinger, Mrst. I can't remember the last time I saw you 'complain', not sure I ever have actually. But work on no sleep is hard. Why does ds1 get up and is there a way of him being able to be awake without you needing to be? (Not sure what your bedroom arrangements are - I have alarms set so that if J goes out of the 'safe' zone (as much as anything can be) I will be alerted and get up but if he stays in bed lining up the toys I can sleep on iyswim.

I wopuld dearly love to get back toearning soon, as you know I graduated last eyar,planned it all.... not a bloody hope.

Even without work I amshort on time,asssuming as ds4goesto nursery in 18 months that I will get on top of it but ??????

There'sa nanny on my course caring for 2 asd children so tey're ut there, Ireckon there'sadifference between being good at schedules and task (as she is) and being thumped and sworn at though

And SN nannies are so expensive - more than dp's. I don't earn much anyway.

Bedroom arrangements are ok and we have alarms etc, although ds1 does have a habit of playing his keyboard at 3am . god knows how the other children never wake up!!! The main problem is he is a total teaser and knows exactly when he is riling someone and finds it hilarious.

So he'll appear wanting a cuddle, I put him back in his room and he sees this as an opportunity. So then every 20 minutes or so he'll appear laughing and 'pretend' to get into my bed. And so it goes on. Variations of that. Which he finds hilarious. He finds it difficult to get back to sleep once he's up. This morning I did eventually manage to persuade him to stay in bed but I only managed to doze. He was singing to himself and occasionally thumping on his window so I had one ear out for him.

OK so

I'llmove back home

I an have Sphil'schildren whilst she takeson full TA duties

then I can have the boys back

Oh how I wish! I would love to childmind ASD kids but breaks rules of lease. I'd have to be working to buy anything that would allow me to do that.

I have a vague idea of being SE one day, but increasingly DH'sfieldlooks as if it mnight take us anywhere in the UK and the idea I have would mean signing up for a year at a time (my background ismentoring, so a NFP providing mentoring for dx /first year after period- DLA, statementing etc).

But as dh's income will always pay main bills we have to worka round him,and his industry does 6 month contracts

I'd like to be a SN childminder as well. But our house is such a mess I couldn't.

Uh yeah I forgot that aspect PMSL,

Ok sorry if this is inappropriate, but what about temporarily giving your ds something to sleep. Just to help you rest for a bit and get back on track.

It's all the time though - randomly but there are periods every month. I can't give him something all the time. Melatonin doesn't work very well with him in the middle of the night (use it to get back on track if he won't settle), not least because he then won't get up in the morning.

I see. You are doing a PhD, is that right? In the final writing up stage? Could you extend your deadline by going part-time and spreading the funding over longerIYSWIM? It would mean a pay cut but maybe the pet sitting could make up some of the short fall? Or if you are on a grant would part time working take you under the threshold for carers? You can earn up to £411 per month and carers would be worth £230 per month. You can earn more than this and then deduct your childcare from the total. Not sure but imagine this would count even if you are using your direct payments for it (just allocate DP to something else).

Earnings not a problem for carers as the stipend doesn't count as earnings - problem is number of hours. I don't get carers because I am studying more that however many hours a week it is that you are allowed to study. Never mind that I do exactly the same amount of caring as I always did and do my work around the caring. Not sure whether the stipends can be paid part time. When I applied it couldn't be but I think there was talk of changing that.

I have a 4th year to finish anyway (unpaid) and will use it. Will not go over because they I have to pay a lot to stay registered and there is no point paying for a 2nd PhD iyswim. I shouldn't have any problems finishing within 4 years anyway.

I'll start to claim carers as soon as the 3 years is up.

I'll manage the next year. I suppose I'm thinking long term for the future and was wondering whether I was being a bit wet finding it so hard. Also curious about other's solutions . It does seem like childcare is a huge sticking point. I have realised (since starting the PhD) that there is never going to be a chance of getting childcare when I want/need it for ds1 - and presumably that will get harder as he heads into his teens.

Also this book was recommended on another mn thread www.amazon.co.uk/Professors-As-Writers-Robert-Boice/dp/091350713X/ref=sr_1_25?ie=UTF8&s=books&qid=12 66327656&sr=8-25

ah now that looks very useful thank you (although in the main need to get my arse into gear- it's amazing how distracted I become when I am meant to be writing - this morning I have more or less set up the video montage site If I could be this productive with the PhD it would be finished by now ) I do think the lack of sleep/general stress and full on-ness of caring for ds1 is incompatible with a thinking career. For me anyway!

Did my writing up in my 20's with no other committments whatsoever and still took bloomin ages!!!
I'm facing this dilemma myself. I do a mindless job 2 days a week and can fit all childcare around that (three children, youngest with ASD but in laws pick them all up from school). Have seen a full time job I would love and am going to aplly but goodness knows how the childcare would work.

Yes my last one was written up in my 20's - although I was working part time (which was more like full time because it was my first time teaching A level- so lots of preparation). I know I can't get into that situation again as I just don't have any spare time to do extra writing.

We were running a pub when the dcs were small, which was definitely full-time (and a lot more!), and it was just about doable when it was just dd because she was such an easy little girl. She thrived on pub life actually, always managed to persuade the regulars to read to her etc. Then ds came along and was totally different. I was getting a ridiculously small amount of sleep, and was stressed out during the day with trying to work when ds wouldn't let me put him down. He screamed every time I was out of his sight. When he was 4 we admitted defeat.

There is no way I could manage to work full-time again, I just couldn't cope.

I thought I'd cracked the part-time thing by doing outwork from home for a printing firm. It was great as I could really work round school hours and holidays and still have time to do shopping etc and keep appointments for ds. Unfortunately I've had hardly any work at all since christmas, seems I'm a victim of the recession .

Oh that's a shame pixel

Thanks. Ah well, it might still pick up, could just be a post-Christmas lull!

fingers crossed there's more call for printing soon Pixel.

I'm in a similar position to Brioche in that my DS has relatively mild SN, but I wouldn't really contemplate full time work, so I don't think you are in anyway being unreasonable in being troubled by the practicalities. I work part-time in a low pay but low stress NHS admin job, which works fab in term-time, and less well in the holidays!

my friend teaches classes at the local Uni, and that seems pretty much term-time/school hours only, but I guess that those sort of jobs aren't easy to come by (her DC have had lots of hospital appointments etc, not strictly SN but physical issues).

I'm teaching a session at a university next week.

But even that's a nightmare because it finishes at 3.30pm. And ds1 gets home between 3.30pm and 3.50pm. So I have had to ask dh to work at home that afternoon so he can meet ds1.

I saw a job at ds2 and ds3's school - TA for a child with SN, but even that finished at 3.30pm so wasn't doable. I thought it would be a really enjoyable job.

I may see if ds1's school will have me as a bank TA.

What about encouraging ds1's school to set up some after-school childcare? Some schools will if there's a demand.

It's really hard because of transport and the very high support needs of the children. Classes often have ratios of more than 1:2 (with about 6 to 8 children per class). It has been discussed but I can see why it would be very difficult to implement.

The playscheme ds1 goes to for example (which caters for students from ds1's school and another school) takes 6 children a day - all with 1:1. Those ratios make after school care really difficult for the school to organise.

I'm hoping to be taken on as a 1:1 for a child with complex needs - if it works it'll be great, but it's a complicated situation that I can't say much about on here and is just as likely not to work out. And the trouble with that sort of job, like the one I'm doing atm, is that it's so precarious - short term contracts, all dependent on funding etc.

I only have a few TA meetings a term, but I'm having to use some of our respite hours to cover those.

Or would any of the TAs at ds's school be willing to become an after-school worker (their pay isn't great and they may jump at the chance)? You could then have them take ds back to yours for an hour or so...I'm sure you've already thought of this but I'm just trying to think of ideas!

TA's finish slightly later than the kids and because of transport/wide catchment it isn't that easy. Maybe doable in emergencies but not otherwise. I can find plenty of students but undergrads aren't reliable enough ime and 9 out of 10 postgrads can't cope with ds1! The ones that can are great but hard to pick out.

TBH I am reconciled to a 4th year unpaid. And I think this thread is confirming in my mind that there's no point trying for anything that isn't flexible. The stress of trying to make it work will be too much i think.

Fingers crossed for you Sphil.