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!

What are your writing skills like? Could you write a book based around your research or other areas around severe autism? What about working for parent partnership or other organisations which help parents? That could be quite flexible I imagine.
TBH I would steer away from TA work. My personal opinion is that us mums with challenging children need to try and do something at work that gets us away from those challenges.
You've got so many skills I'm sure there is some way your difficulties could be worked around. How is your dh with the children? Can he cope with ds? Because if you got a postdoc it would be a decent salary so that maybe he could drop a day or two and allow you to do a 3/4 day week.
Wishing you the best of luck.

Nikos, it's funny you should say that about TA work. I've just seen a job that actually fits in with ds's hours (8.25am - 3.30pm. Ds taxi leaves 8.10am he arrives home 4pm. Only down the road so could just manage! And of course term-time only), but it is at dd's school working with a teenager with behavioural problems. I thought it was a great idea for about two seconds then realised that the only respite I get is when ds is at school, why would I fill that time with another difficult child? So far this half-term I've had to take ds to buy shoes and get his hair cut, which were both a challenge and I'm already shattered!

I would only do supply TA work at ds1's school (if they would have me) as it's the only place I could get around being back in time. I live going in there (I do anyway) so it wouldn't be hugely stressful.

I could write a book. Buy I pretty much loathe writing and I doubt it would bring in much in relation to the effort.

No chance of dh dropping hours - he has capacity to earn triple my pay so it wouldn't make sense. It makes much more sense for me to go part time. And even if he did reduce days it still wouldn't solve the daily after school childcare problem.

I will apply for my own postdoc money for part time work but I wouldn't want more than 2 days as I just can't work during the holidays it seems. I don't really want to work on anyone else's project particularly (seen too many disastrous ones - and I just can't work to someone else's timetable very easily). My day to day lovely supervisor is happy to apply with me and a friend too but tbh I don't particularly rate my chances because of the type of work I do. And obviously I can't move and wouldn't be willing to anyway. ESRC fellowships have been mentioned but I am aware I do not have the capacity to take anything like that on. I would be so stressed the kids would suffer so I'm not even going to apply.

I should have become an animal behaviourist - would love that and am still a zoologist at heart.

I have nearly set up the photo montage site - that has potential I think. Will see.

Mrsturnip-if a research post is advertised as full time, how flexible can they be on hours in your experience?

Not as much as they should be usually. From talking to others it sounds as if a lot of posts are welded to the 9-5 model - which is ridiculous with the type of work I do.

TBH though - although I enjoy the work I do I have no wish to climb the academic greasy pole and am not willing to be as flexible with topics/methodologies as I probably should be (from a work point of view). Because even part time work is hard to fit around ds1 on a day to day basis I really don't have the energy for work to be hard work as well iykwim. Especially because caring for ds1 is hard work on top of everything else. Much as I love him it is constant.

Worked with sn children with challenging behaviour then had my ds with challenging behaviour.There is a difference,I loved and played with my ds when I came home,I actually found it relaxing whereas when I worked with my challenging pupils I was teaching them and wanted to see progress.
Also,many times over the last 21 years parents have told me that they feel I am the only professional that understands.
I would say if a TA job comes up and it is convenient it might be worth trying.You might be absolutely brilliant at it.In fact,because of your unique position,YOU will be absolutley brilliant at it!

I definitely will see if I can go on the supply list next teaching year for ds1's I think. I love ds1's school and have always enjoyed the time I've spent in there.

jardy i worked in the fieldaswell before having the boys- a different world.

Being a TA at the schoolsounds good, ours made all the TA's barr the minimumfunded ones redundant and loike you anywhere else is unmanageable- drop boys off 9,trip in from village 30minutes- oh look they wanted you there 45 minutes ago!

There's a rumour there will be big changes at our school in April but tbh I am not sure, after toomany LEA battles, that my 'face fits' IYKWIM.

ATM it's all quite doable, it's only if nything changes it becomes a problem- say if landlady wanted her house back )we'd likely end up in a one room emergency accom- can you imagine?!?- although DH has a Plan underway that may buy options,wewill ahve to see- there's a chance of a bursary that if we bank could pay six months rent in advance which may just get us past universal FT work only rule they have here). Doesn't pay to worry too much though I am finding. Nothing we can change.

Been talking about setting up independently doping ASDsupport after uni finished (still away off) but am a bit worried as the man doing similarish locally has an almighty aggressive rep if you step on his toes (though what I have heard I equally think it would be a Good Thing but anyway); still fancy the SSD training but it depends on where Dh ends up and what hours he ends up doing- if he gets the local work he wants Imight well be able to fit around,if he only gets offered London theatre the students traditionally do for a bit my chances will be pretty much over, and I am not getting any younger.

Just a case of waiting and seeing.

Gosh, I can't even get childcare in the holidays for DS with AS. As soon as I explain his problems... 'I am full, sorry'.

I used to work full time long hours and on call at night but once DS came along it all went to pot.

Once he started school I tried part-time work in an unrelated field but the school would ring me to come and get him several times a week and with all his hosp and doc appointments it was obvious the boss was pissed off (and the other staff). So eventually I gave up totally.

I get the delightful £53.10 carers allowance now and also work for myself part-time. I mostly work on a donation only basis from clients apart from transport costs if they want a home visit.So I don't make any money but I love to help people and feel I am giving something to society.

hi saintly

a couple of suggestions.
Part time lecturing, hourly paid, it's often seen as a raw deal compared to a salaried lectureship but you can pick and choose what you do and when. And while the pay isn't amazing when you take preparation into account, an hour of lecturing will pay about the same as a day of working as a TA in a school.

Jobsharing a research job. There are quite a few researchers around who want part time work, I'm considering it with a friend/colleague at the moment (I work in a similar area to saintly). It might be a way of doing a job which they insist is full time or rigid hours.

Doing bits of other people's contract research. I do this, and you don't have to be at someone's beck and call, it can be more like freelance consulting and you fit it in when it suits you. You have to be quite assertive for this to work.

Applying for your own grants. yeah right. works for some, and could work in a health field like yours where there is money around. And then you can write your job in as part time.

I met someone yesterday who is setting up a big research centre near to you, on health and the environment, he says they're going to be desperately recruiting for staff soon. It might be worth looking out for. he was very encouraging, a father who works part time and seemed very aware of childcare issues..

Thanks Fennel. My main concern about lecturing was the timing. 9 am's are a nightmare (no pre-bus care) and I need to finish by 3pm, it just makes my day so short. Even the odd one offs I do now always seem to need dh home early or late and he just can't do that regularly.

I am going to be putting in a grant application with my supervisor and someone else you know - she needs to work part time as well and has quite a lot on her plate (that should be enough clues!) but I'm not sure of our chances really. The autism grant awarding bodies like numbers as you know so the grant aps will need quite a lot of thought. I do have some contacts now in London who have managed to get grants successfully to do what we do so will ask them for advice when we next meet. Although I think theirs have been ESRC grants which of course are hugely competitive and full on.

Interesting about the contract research - I must quiz you some more sometime, the people I have spoken to recently have all had a dreadful time which put me off- it may be that there are certain areas to avoid, or it may be a case of choosing jobs very carefully (I know you have done that). I will keep my eyes open though.

Oh interesting about the research centre as well. Next time we have a coffee I'll quiz you some more.

your work sounds very rewarding chickpeas!

hi again

I am hoping (properly this time) to come to your research group for the next few weeks cos it ties in with what I'm doing at the moment, so perhaps we can have a coffee or lunch.

the research centre is being set up in a small city to your west, county town of the next county along, I guess that's not too far from you?

the pt teaching I'm doing at the moment is mostly qualitative methods consultancy, I more or less choose my times and the students flock in gratifyingly enthusiastic manner to soak up my words of wisdom on methods and analysis, usually one at a time. And there's the odd bit of lecturing but I can say yes or no at whim. I think that sort of thing might suit you. I'm rather enjoying it.

mutual friend has had quite a good experience of research contract work, I think, v flexible to her family needs.

tho i appreciate you are more tied than me or her in timings and childcare, but maybe someone really good with ds1 will turn up at some point.

Oh that probably is too far Because I am stuffed with the timings.

oh well I will keep an eye on that place, I think there will be research work as well as teaching.

been thinking about this today, but have no remotely genius ideas to report, sadly. sorry that timings re uni teaching have been so awkward. only things that occurred to me are - doing some sort of class/group for pre-schoolers - surestart or jo jingles. or whether anyone would want aba tutors termtime only. or I suppose the usual usborne/body shop time sales from home stuff.

Oh I hate book/shop/badgering your friends stuff- tried that years ago and it's not me. Plus fairs etc tend to be after school when I need to be home. I don't think jojingles is me really and no-one does ABA or Floortime (which I'd rather do) or anything like that around here.

I am currently pricing my video montages - website it almost done. It's hard because there's nothing like it in the UK and some of the US prices are ridiculous ($500 - ludicrous). There isn't a business feedback section on here is there and people get funny about advertising, I might have to email everyone I know

With that plus pet sitting, plus part time research work if I can find anything that fits in we'll probably get by. Although that sounds a bit too much time wise......

Sorry that sounds grumpy and negative. I'm not too worried about actual work because I think even if I can't get research work with pet sitting and the montages I'll probably be able to make enough (both have low overheads). I was just wondering whether I was being a bit wet about it all really.

But I don't think I am after this thread, no access to childcare is a big issue.

I don't think you are being wet at all, I find it really hard and I don't have nearly as many constraints. It really annoys me that academia is so slow to change ways of working, when really a lot of work could be done at different times and places. Academics have this idea they are so innovative and open to new ideas but sometimes the system does seem very set in its ways.
When I run a research centre it's going to be a sort of academic facebook. watch this space...

Your research centre sounds ideal!

I get annoyed as well - as you know my work can be done from anywhere with a computer - no need for a daily trip to university

must be v frustrating for you saintly

can empathise with you a bit. I am contracted to do 24 hrs but lately have been having to try and work loads more due to project I'm on at mo. A lot of which could be done remotely if I actually got the vpn access I'm waiting for

Tis a struggle. Am managing at the moment only at the detriment of dh's business and the state of our house / laundry etc. Then no matter how meticulously I organise home nursing care / playschemes etc for the hols I still had to take time off this week due to dd getting ill.

Sorry have got nothing helpful to suggest

I sympathise. Illness is a killer. I'm beginning to think that even flexible working isn't enough as holidays kill me. Ds1 has barely slept this holiday - has been up since 2am today ( not my problem at the time he was at respite until 9am) and has just been awful all day. His head is visibly bruised from bashing it - I feel like a film and glass of wine tonight but have to find the energy to work because I couldn't work today.

Oh moan moan moan - I'm just fed up with life being full on i think with no time to ever just do anything - too busy thinking about everything else that needs doing.

It's so hard when caring takes up soo much energy and then there is nothing tangible to see for it at the end of the day. All there is is a backlog of things left undone.
But you have achieved loads.You are on your way to a second PhD while caring for three children, let alone one with severe needs. You are developing two businesses and it sounds like your dh works long hours.
Pat on the back for MrsTurnip anyone?

Lol - i read your post nikos & thought bloody hell I am insane. Things do need to change that much is clear and it's good to realise that making changes is the sensible option and it's not giving up or not trying hard enough to not be able to manage it.

And how can a child who has been up since 2am still be bouncing around full of energy? That is my question for tonight - I thought he would crash.

saintly, you ahve achieved loads.. But please if youa re questioning yourself at this point please don't continue. You are the linchpin that holds it all together, please choose what should give before something breaks.
I'm really not trying to be the voice of doom. I really admire the way you have managed to balance family life, caring , work & giving so much but I am worried for you.

Even if its only a short break & you return to doinbg it all (some of us thrive on it) you do sound as if you could do with a break.

Holidays & sleep deprivation (that in our house comes with a change of routine) magnify all the difficulties that we face on a daily basis, but with a half decent nights sleep we manage & just about manage.

I found relinquishing responsibility at work very hard, but a yr down the line I find that I am enjoying my more relaxed approach to home & work, I listen to my body a little more & don't slog on regardless.
If I am knackered I am now able to say to dh over to you - while I go to bed. I can do this without guilt, because I do not have a pile of unfinshed work waiting on my desk.

Please remember to take care of yourself first.

Thanks anon. You're not a voice of doom I think I feel the same way.

I said to dh earlier that I cannot continue.

He said 'you don't have to'.

Am on the home stretch with the PhD and I will be careful not to take one too much - I really don't find cat sitting stressful (except when it bloody snows!), I find it relaxing so that's something.