Is it possible to work when you have a disabled child? Is it too stressful?

[meltedmarsbars]

I don't know how many of you do work (properly paid outside the home, that is )
I don't work atm, but there is a part-time coordinators job coming up here that my sw told me about, linking parents of children with disabilities to council and other organsiations.

Is trying to work and do hospital/therapy appointments/sickness/childcare just too much?

Does it make you very stressed?

Does it make your dp very stressed?

Do you end up eating takeaway? Does the ironing ever get done?

Is it worth it? I don't know whether to apply or not. Help me decide!

I work in an intensive care unit, they only do 12 hour shifts, atm i only work sundays but after the new year i'll be adding in every other tuesday my ds 1yo with mild quad cp is looked after by dh and on tuesday will be looked after my angel of a mum!
the things i worry about is the unforseen things like if hes not well, hosp appointments i can re arrange.
we generally eat home cooked meals, dh does A LOT around the house, (he's ironing at the mo) and he helps out with ds physio.
i dont get stressed with mr working, dh doesn't get stressed
and tbh i quite like the time away, although i do get regular texts updates!

My daughter doesn't go to school ( i home ed her because of no suitable facility/school in our area for her) so have to fullfill so many hours of education a week.
It has meant i've not worked for 12 years now though
One day i may have to go out to work as her condition is terminal and my career prospects will be nothing ]sad] so can identify with what Riven was saying.
I worked voluntary for Home Start for a year but had to stop earlier this year due to my daughters condition after an op didn't go well.
My husband works fulltime and although i get direct payments it is only enough for an hour and a halfs help a day to cover the school run for me.
Being able to work and escape the house a bit would be great but doesn't look likely for me anytime soon.
Good to see quite a few people on here who manage it though and that there seems to be some understanding employers around (though probably not enough)

I am really lucky in that I have very supportive employers, I work full time doing 3 x 12.5 hr shifts a week which usually takes the form of 1 week night, 1 weekend day and weekend night a wk. I am then at home all week days which means I can attend all ds's appt's etc.

Dp is forces and currently posted away but flies back fri night to sun night which has been when I have been fitting 2 shifts in and my brother stays over 1 night in the week with my friend having ds the morning after so I can sleep.

I am able to swap shifts if needed and my employers are very accomodating, I recognise I am in the minority here!

However I am 36 wks pregnant and have just started mat leave yay! So things will be easier at home, in a way, for the next year. We have delibrately timed this pregnancy to coincide with my return to work being when dp is posted - hopefully back to this country but who knows what will happen - he has been told he will be deployed on an operational tour at the end of this posting which will mean no dp for 6 months when I am due to return to work - not sure how fab my employers will be in that situation!

I am fortunate in that I can work my hours around ds and I have family to help otherwise I am sure working must be v v v hard if nigh on impossible.

Yep those comments get to me too,we do work hard but we're just different thats all.

I ahve nice things though, my Dh and my kids.

I worked when the older two were littlies,funnily enough in a related field.DS1 satrted to become obviously SN around the age that ds3 was born and I never went back- I would have done had DH not been employed, but we needed someone at home and tbh,as even now I don't get real sleep there are limits from that alone.

I did do a degree when ds3 was at Nursery and that was wonderful forme, I ahd hoped to train as a teacher but as ds3 was also dx'd whilst doing teh degree then that just ahsn't been possible- a nanny woudln'twoprk (ds1 ahtes people in the house, as do I unless simply visiting friends IYSWIM), ds1 is too aggressive for after school club and I th Cm couldn't meet ds3'sschooltaxi (she has toher runs to make) even if ds1 could go there.

I'mnot writing offworking but it won't be yet, I'mmanaging a night a week at Uni and I wuld recommend that to anyone just to keep your brain going but I can't see how I could do much more. A job would have to be no summers, only between 9.30 and 2.45, and not weekends as that's when the boys attend their SN activities and DH works then (he was amde redundant in the spring so works from home and attends Uni).

I'dlove a job like thatB PT coordinator though, I did apply forlaods in the summer but didn't even get a single interview- my alast three employers no longer exist so am bit stuffed reference wise, the MA I am doing is vocational though so hope that will help with that.

The way we used to do it worked actually though- this was when parents were close and young enough 9and free enough- have a suister with a DH who has a possibly fatal illness that could take him at any moment, she has to get priority for childcare of course)

DH would work 8 - 4, come home swapcar, i would drive to acollege and work 5.30- 9 (I loved it there, if dh had to work lateMum would do handover

Fell apart when job changed for dh- manageable with mum in term time, but in summer I was needed in daytime instead (no evening classes) and we could only afford one car, so i'd have to drop boys at mums at 5 (!!), drop dh an hour away at 6, drive to work and get there 2 hours early (but petrol too costly to go home then back), pick kids up at 4, dh up some time between 5 and 11 (nightmsrish job)..... not only was I exhausted, Dh was angry at being told off constantly by boss for not being flexible (if a situation happened after Dh ahd rung me to get him he'd have to leave work on that time, or let me sit out front for often hours)and our marriage prewtty much collapsed. In the end Dh got very ill and they sacked him,luckily in that his boss dropped dead at his desk presumably from the strain. I missed the colllege job though, an awful lot.

I don't work much now. I tried and tried when DS2 was tiny and still do some self employed locum work but his health is so unpredictable aside from the mountain of hospital appointments etc.

To be fair my previous career which I was actally very successful in and really enjoyed no longer interests me. This could have happened anyway or (as I suspect) my priorities changed, I see life very differently and I no longer get the same thrill from it that I once did.

I do volunteer for Homestart though and love it! I've met some brilliant people and once or twice a week I have a different purpose to the day.

I know it's not a terribly pc thing to say but I actually quite enjoy being a SAHM for the first time. Both of my boys went to nursery at only 12 weeks old and I now get to do the stuff I couldn't before. Am also pregnant again so looking forward to enjoying babyhood again (hopefully drama free!)

meltedmarsbars Having said all that in your situation I would at least apply and go for an interview. Get a feel for the place and see how you feel about it then, at this stage you have nothing to lose and I think the job sounds good.

Hi, I work full time but over 4 days ( use the other one for all the appointments which luckily tend to fall mainly on the same day).

Its do-able because me and my other half share the school pickups, I have a great childminder, I do a lot of work in the evenings after the children are asleep, I have a flexible employer and I know I have to work to keep sane!

But it is really hard - if you can, definately go for part time. The problem I find is that I just lurch from week to week with coping. There is absolutely no 'down' time - it is either being with the children or being at work. Whilst I quite like that, I am not sure it is good in the long term for good mental health!!!!

Employer is important,something we've found with dh at uni is that there is no legal rights for things like time off there and their attitude is be here of e off, somebody elsewill take your place (they will, course needs tose a % of students this year).

My Uni course was far more flexible-don't know if that is because mine was mostly female students and lots of mature students dh's is mainly male andhe's only one over 23,only second one ever (and first dropped out)

WjhenI have my MA i fancy a bit of consultancy work with famillies around the timeof their DX, if dh works in his intended field we will need me at home becuase it will be unpredictable hours anyway.

Riven - you are not crap or useless, you do such a great job looking after your children, you are a great mum and being a mum is the most important and rewarding job. I look up to you, when i'm having a bad day with the dd's i think about you and how hard it must be for you.

I work 24 hr pw

Fortunate in that my job is flexible. Also my dh is self employed and he takes lots of time off/ is able to work around appts etc by doing work on weekends. I also have family support in emergencies. We get 20 hrs pw nursing support as well which gives us 2 nights off

My dd is under 12 consultants so pretty much has at least 1 appt a week. She clocks up a fair bit of time as an inpatient as well - used to average at 3 days every 4-6 weeks but we have had quite a good run of late

I don't really have a fat lot of annual leave left to do nice things - I tend to use it when I need to rather than going into parental leave

I actually really like coming to work and doing something where I am challenged / respected in a different way to what I have at home. The money is also good. Don't get me wrong - sometimes its a real bind and I have struggled with letting dh do more stuff with dd but overall I am fortunate to have struck a good balance. Tho I appreciate it could not happen without all the other support in place.

It hasn't always run so smoothly - it has taken us a while to find our feet with it all. My dd was hospitalised for weeks earlier this year, and that combined with no support / respite once she was home really tipped me over the edge. My doctor signed me off from work for a month with stress. Although it was everything that wasn't work that was the actual cause of the stress. Was just spent and had no room for anything else. Things very different and all round better now we get the nursing help

dh is not stressed - far from it. He now gets to spend more time with the dc which he prefers (as he is not working so much)

we eat well - mostly nice homecooked stuff

washing is spread on radiators and chairs all over the house

'a tad crumpled' is now quite acceptable turnout for us. My ironing standards are somewhat low. It builds up and we'll spend a few hours every couple of weeks ironing the most desperate and obvious

Best of luck with what you decide. I reckon it sounds the sort of job where you could apply and discuss some of your concerns at interview should you be successful

Well, I work full time, despite carting round my own new found chronic illness and DS and his unpredictableness. It is a bit of a juggle. However, I'm glad I do as it helps balance things out and keeps me sane.

BIG BUT - i work around the corner (2 mins walk - see home for lunch now) and DSs nursery is a 5 min walk the other way. In between work and home are my best pals - the GP surgery and pharmacy! And it is a small, family run company who, so far, have been fab.
I think employers and childcare are the biggie for me. Its no hassle at the mo as DS loves nursery and they love him, so I know he is happy, and work are fine with me.

It is hard though.
Good Luck x

oh and if you possibly can - the other things I have found to be a lifesaver are doing my shopping on line and having a cleaner - so the time I do have when not at work can be spent with the children and not feelign awful that the house is a tip and I should be cleaning.

what I would say here is that every sit is different

It'seasier to work when you have fewer children as you have lesspeople to divide yourselfamongst 9and indeed less washing!); it's easier if your Dh works regualr hours, you have family close or understanding employers.

It'slesseasy if you ahve several children or more than onoe sn; if your partner works irregular hours or a distance from home that means they can't get there in a flash if needed (or double that if your career area has that factor); if your childs needs preclude them accessintg childcare- ds3 thrived with his CM, ds1 is milder yet agresive so cannot go anywhere with small children without a 1-1.

And indeed it'seasier to work if you want to.becuase you ahve mroemotivation if its something you like to do. It helpsresolve the complexities.

Too many of those factors areout for me ATM, however even if you cannot work i think it is important to do something- advocate stuff, voluntary work, study, something- if you are someone who needs to feel they are 'doing' as I am

Well, a lot of interesting situations here.

I'm already a "volunteer" at school - have my CRB .

We'd have a problem in that dh works an hour away and is abroad several times a year, often for 2 weeks at a time - he can never do the hosp appts or school run.

A childminder is out because of the wheelchair. We have no relatives here.

Riven, don't feel that you are useless: as Marne says, we look up to you on here, with what you have to cope with.

I couldnt work at all when DD was ill. She needed far too much care and had too many appointments.

I do work now. DS has a disability. I only work two days and work in social care (tends to be more flexible).

His conditions are very mild compared to my DD's and lots of the children on MNs. But he still has tons of appointments and I have lots of meetings.

Bit more complicated because OH is disabled and works. He manages to work part time but couldnt work and do half the childcare and go to appointments/meetings etc.

I am glad I can do it though. It was a scarey thought but I was very luck to get the perfect job for me

Just realised that I did'nt answer any of your questions in my post, how rude!

So I would say definitely go for the job, find out more and see how you feel, you ll never know unless you try it.

For me I can work around appts etc fairly easily, but I do sometimes get stressed, sometimes very stressed! Dp and I hardly see each other due to our current situation - but I will see him lots more now i'm on mat leave - he does'nt always find it easy having ds on his own (and ds1 and ds2).

We eat together in the evenings as I am at home during weekdays but if I am off to do a night it does stress me having had a day of it then cooking then bedtime then work.... at the weekends dp sort of feeds the kids but I will normally have to guide him firmly!

As for ironing, well there is a massive pile in the kitchen as I type there is always a massive pile in the kitchen which is often just ferretted through in order to find something slightly wearable!

But for me its worth it, and actually financially I have to work so not too much choice. Ultimately its a very personal decision isn't it?

Riven - are you ok? you sound very pissed off and down?

Riven- i'm always on the phone to dh trying to get him to come home and help, if i am ill (like today) its so difficult to look after both dd's (even if they were nt), i know a few families with children similar to you dd and both parents stay home or work from home, your doing a great job, if i was you i would be on the phone to dh every day asking him to come home. I hope you are ok?

Ah Riv they ahven't aclue,i'vedone it lots of times when I;ve ahd the boys locked in the bathroom for safety and ds1 on a rampage.

Really, it'd be pretty feeble to think @I really need dh but I am scared that some women I never met wouldn't respect me so I will sit here and place us all at risk instead' wouldn't it?