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!

How many unplanned / short notice hospital appts do you tend to have? I have just gone back to work part-time (2 days per week) and I am loving it because it's just a whole world away from kids and stress. However, it's extremely flexible - basically I'm freelance so I only get paid the hours I work, and if I can tell them in advance that I have hospital appts it's not usually a problem (although this week was tricky because I had one child after the other with flu so missed both of my days). However, DD's needs are totally different to your DD - she's physically fine, but has behavioural difficulties so can't really be minded out of school and isn't accepted by after school club (they can't provide for her and I agree with them!). She has a weekly schedule of appointments but I just fit work round them. If you can do it, I'd say go for it.
Also DH pointed out to me that if it doesn't work out, all you have to do is quit...

Leonie, I know just what you mean with a beans+wtf meal - we get those even though all mine are at school! We also have no family close by (I did ask my mother last time we saw her if she would learn to tube-feed dd2 but she declined ) to help so got a ss direct payments worker - have you tried that route for help?

BriocheDoree, yes its the adult life that I'm envious of of all my friends who work- in fact I can't think of another in our circle who doesn't have some kind of part time job.

We can go for a month with no hosp appts then we have 2 or 3 in a couple of weeks, plus physio appts and of course more days off due to illness than the average child.

The job in question is a year-long contract of part-time hours.

Saw this thread and had to read as i've often contemplated the same !
I worked part time voluntarily for a year last year (very part time though). I just wanted to see other adults really.
My daughter is severly physically and mentally disabled though and has a lot of appointments,i also have a son who has ASD and 3 other children.
People including my husband have often told me they think i could work (as he can get the odd flexi day). When i say i'm not sure i think people just think i'm being pessamistic. I'm not sure the trade of with all the juggeling for a few hours of 'me time away from the home' would be worth it for me though. Maybe in the future it will be but i think the kids and house need me to much at the min. My mum does help me out (i employ her for an hour and a half each morning as i pay her through direct payments,very worth having !)i should say,so i probably sound a bit wimpy and plain work shy now lol but i'm really not. Work would be a welcome break if i knew i didn't have everything else going on.
I think if you'd like to give the job a go then you should. The very worst that could happen is a few months in you find you have to much on and have to resign. You may find though that you manage well and love it. I'd be very tempted to give it a shot but thats because very much like you mentioned i am envious of friends and fam that work.
Take care x

I don't currently work outside the home, although all my children are now at school. I did work outside the home, on a self employed basis when my DS3 who has Downs was aged 1-4. I arranged my own hours so they fit in with my older two sons school hours.

My son went to a 'daycare' type nursery until he was 2, then a mainstream nursey school (although it wasn't a 'day are' type nursery, they offered 9.30 until 12 then 1-3.30 sessions per day, plus a lunch club, so DS3 went there from 9.30 until 3.30 for three days, then 9.30 until 1 the other two days. I also had a child minder for a while whilst waiting for all the nursery sessions I wanted to become available.

I was a single parent at the time, plus had my own horses, so I( felt I had to work, and I had no family nearby to help at all.

Yes, we sometimes had takeaways, but he children had a 'proper' meal at school ,which helped, as it meant I didn't have to bother too much if I didn't want to, and if I really couldn't be bothered they'd have something like pasta with butter and cheese, or sausage and chips etc. They ate plenty of fruit, so I didn't feel too guilty. I was tired most of the time, and yes, sometimes the housework got on top of me, but I only had myself to please and so it didn't really matter.

Now I am re-married, hence not working, but I am thinking about looking for part-time work in the New year. I struggle sometimes now, so wonder how I'll manage, but I always say I am never tired until I sit down, I'm fine if I keep busy, and I have to admit, I felt better when working.

It may depend on how flexible those pt hours are ( don't try to fill every school hour with work) and how stressful and tiring the work is and if it fullfilling a need in you. Having a PD that will share the chores chearfully would be an advantage I imagine!

For me having some childfree time to do the chores is essential (some school hours at home not working) I work on the days least likely to involve hospital appointments. Childcare is another issue - especially holidays and training days- it is the most likely source of stress!
I only have one sn child ( demanding but medically well) and work only very part time. Parenting my child is frankly physically and mentally debilitating - but work gives me a positive perspective and a break . It also allows me contact with adults (Dh is away alot and I have no family close by).

My experience as the primary and often single handed carer is that 15hrs a week ( +travelling) is about as much as I can work as a regular commitment - but more if there is flexibilty (4 short days one week 2 the next) I have heard other mums without childcare say similar.

I do the ironing, prepare next day meals, organise school bags, when ds is in bed (Ok sometimes I go to bed the second I get him asleep), the cleaning somewhat haphazardly when I am not working. I put washing on each time I get woken at night. When ds is in the bath I clean the rest of the bathroom, the food shopping I grab when I can. I do a lot of plain meals and casserole type meals that can be cooked the night before or microwaved speedily. I do cheat occasionally and buy ready prepared veg or mash but take away is a very rare treat. Often my only sitting down time is on the train to work and back - a good time to think or plan. The biggest problem for me is lack of sleep if up a lot in the night.

So if you don't over do it, have reliable childcare, and can cope with an imperfect house then it might be a good idea! Can you have a trial period? Good luck!

I work part time and although my daughter has fewer appointments now, there was a time when I used a lot of annual leave on them.

I work because we need the money and also because it can be a good escape from home at times. I focus on my work and find I have forgotten whatever horrific thing I've been mulling over! I don't want to lose my work skills as you never know what is round the corner in life. The social contact of work is helpful too.

I would say go for it!

I work part time (18.5 hours per week over 4 days at the moment, plus a bit of overtime).

It's bloody hard work especially with DH away so much and 2 other children and no family help but I enjoy being more than just mummy and also we need the money. I have also spent years training and studying to get to where I am now and if I don't work I lose my registration so need to keep my hand in.

Mind you DD2 is 5.9 now and at school, I hardly worked for her first 3.5 years of life as it was impossible re childcare, medical stuff etc. I manage now because she is at school 6 hours a day and I have a very good childminder (who has her own disabled child) and an understanding employer (whose own child has Down's Syndrome) so they let me jiggle my shifts if needed.

From all of your posts it sounds like you have to be extremely well organised re childcare, meals, chores, and have a very understanding employer. Afterschool childcare would be a real problem for us as dd2 is in a wheelchair so can't get into most houses.

I will admit that we do manage at the moment on one salary so I'm not being forced to go to work. However the adult world is tempting me!

Whats your advice for maximum number of hours per week to strike the balance? I see Magso says don't fill every school hour with work. Would an employer really accept 3 days of school hours only?

I don't see why not, melted - as long as the hours you can offer meet the needs of the service then it shouldn't matter when you do them.

I would say you do need to be pretty organised - our calendar on the kitchen wall has all the appointments on it and I plan ahead with regards to work, childcare etc. If they send us an appointment that clashes with dropping DD1 at school or DD3 at nursery I just tell them I can't make it and need a different appointment time!

I get my groceries delivered and do housework in short bursts - I try and do upstairs in the hour or two I have to myself when the girls are at school/nursery and I'm not due at work until lunchtime, and I do downstairs when they are in bed.

Personally I couldn't work more than 20 hours per week and I enjoy having some time to myself when the girls are out; I have joined a gym and meet friends for coffee which after 5 years of not having any time to myself is lovely! Try and factor in some you-time - I just left my last job (it was school hours only Monday-Friday) as I was either at work or with the children and it was exhausting. I seemed to spend all weekend cleaning and washing which was very dull.

Hope it works out for you

I have ( well before I got sick!) an arrangement with work to do contracted hours but filled in for staff absences/ sickness when and if I could. My bosses are very flexible and understanding again because of personal understanding of disability. I need childfree time because ds takes up all my energy and attention when he is at home- so I cannot usually shop or clean (except lick and promise!) unless there is someone else with him. Your situation may be different but I still think for most mums some childfree time is desirable even if it is the evenings if dcs sleep well! Having some day time free gives me some flexibilty with hospital appointments too - I try to book on my free days!

I do work, and have dd1 with asd, dd2 who is 2 and dh who has cancer. TBH I love my job and it really helps keep me grounded and also be someone other than mum all the time. Im me, my knowledge is helpful and my experience is supportive. None of the parents I work with has any idea about my family so not being asked loads of questions.

My work is very flexible and have been wonderful.

HTH

I work p/t. I returned p/t after ds1 & then after i ahd ds2 reduced my hours further (20 hrs over 4 days) & changed my role & accepted a demotion as it enabled me to keep working with the flexibility i needed.

I would not be able to do it without the full support of a good employer & a fantastic line manager.
It is muche asier now ds2 is at school & soem of his appnts are at school, although the control freak in me still means I go in to school to attend many of them.

I am not very organised & cannot manage without my diary permanently in my pocket.

The kids don't always eat the best culinary delights but they don't eat crap every night either.

I have also learnt not to worry about the small things.
The ironing does mount up, but i hate ironing anyway. I always manage to send the boys to school in ironed clothes, the house is clean although not always very tidy.

I think working has helped me loads, i have less worry time & thinking time on my hands & gives me a focus outside of the sn stuff

As my therapist once said, you have to learn that you don't need to be the best or be perfect at everything... just learn to be good enough!!

I only realistically work 10 hours a week (plus an hour's travelling each way to get there) but it has been understand that I will up this to 15 hours next year when my little one starts nursery school. However, I looked for a long long time to find something this flexible! I work for an artist who is not based in the same country as me - hence I have to be freelance and pay my own taxes/social charges. The upside is that I get to pick my hours
I can well appreciate that people like Riven and Jo can't get it to work round their kids' needs. I am grateful to have the chance.

J has a lot of appointments. At one point, it was an hour's CBT a week plus various OT/ CAMHS/ blood test appointments! Luckily, it's been possible to make those appointments out of school time (I'm a teacher) on the whole. I guess work during school hours would be possible for most people with a school-age child. Even when J had school-time appointments, work were OK with it. They HAD to be!

It is stressful but necessary for me to work. Financially, I wouldn't cope otherwise. And what would I do, while J was at school? Sit and watch TV? I would get bored, I think. I need to work, but also like working and couldn't afford not to. But every situation's different. If you had 5 appointments a week, that's a sign that working would be too hard.

The only problem with hosp appts is that often they can't be re-arranged to suit, as it is often a specific 2 hour clinic for a specific consultant. Doing them after school would mean taking the other dc's. Atm I make every effort not to drag them around appts - so that the disabilities impinge on them less. Does any of this make sense?

I suppose both parents working would mean compromises all round.

Difficult, isn't it!

I had to give up work as i got fed up of looks i was getting from my boss when having to ask for time off to take the dd's to appointments, SALT and nurseries.

Dd2's sn nursery is 45 minutes away and she's only there for 3 hours so i stay in town whilst she's at nursery (no time to drive to a job), at the moment i don't feel i could cope with 2 SN children and a job but hopefully when dd2 is full time at school i can get a part time job.

I also stretch my holiday out by accruing TOIL by doing an xtra 1/2 hr per day during term time & then taking school holidays off.

I always run out of holiday & take some unpaid leave.

I have 3 wks during the summer hols, dh has 2 wks & we overlap by a week so we get some time together.
My sister coems to stay for 1 wk.
We do scrape by just about & I can do a limited amount of my job from home.

I love my boss

I work 4 days a week, I have a severly disabled son. Im a single parent so need to work for financial reasons but its also something else to occupy my mind away from the stresses of home life.

I am fortunate enough to have a very understanding boss and can switch ny non-working day if I need to attend appointments. My son also has fab grand parents who help alot!

Personally I would be more stressed not working than I am with working!!!

Well I recognised at 15 years ago when DS was born that my previous quite successful career was gone.

When ds was 15 months I worked evenings and weekends (and some overnights) at an emergency GP line, literally handing ds over to dh at 6pm. Bloody nightmare, nearly had a nervous breakdown.

When ds went to SN nursery 10-2 5 days a week I got a job in a school (working with disabled child...how predictable). It was good and worked well, till my little surprise came along.

A couple of years ago I was stupid enough to think I might work towards a proper career again. But our lives seem to go in cycles - we have a quiet few years (as when ds was 4-7) and unfortunately the last couple have been really hectic with new problems rearing their heads, necessitating lots of appointments. At the moment we roam between 5 different hospitals plus assorted school appointments, plus looking/reading/searching for post-16 placements.

Dh pays me £200 a month for doing his books on Sage. But it's a lonely job, and no Xmas do.

hi adrenal cortex is a really useful supplement for stress lack of energy and tiredness
we all suffer from this with special children
can be obtained from mandimart.co.uk
I find i feel better from working part time as I have another activity in my life that is not associated with disabilities
I also run a voluntary group for parents with children with autism and this makes me feel less isolated

if we solely immerse ourselves in hospital appt O.T. physio psychiatrists reports councils for statement we end up never having our own lives
this job sound s great I would go it for set up direct payments for someone to be with your child[this takes quite a awhile] and maybe use an agency[i.e. special people] or a really supportive care giver to look after your child so you dont rush back or are stressed.
this job seems an opportunity for you
if you can set up supports why not try it out .....good luck!