How do you cope with working life and support your DC with sen?

[penny100]

Just wondered if any of you changed how you work, or the kind of work you do, in order to be able to better support your DC with sen? I feel that I am working so much at the moment that I can't give DS (8yo ASD) the support he needs and I'm panicky about losing valuable time when I could be helping him more. With a fairly recent diagnosis there's a lot of new stuff to put in place. I can't not work, financially just not possible, but i fantasise every day about throwing in the towel and devoting myself to supporting DS. Don't want to do anything rash but worry that I'll never get this time back again and don't want to regret later that I didn't do more for him. Really torn. Am so stressed that I wonder if a period of being signed off work for stress might at least help in the short term. As a result of appointments and school refusal etc I have been off work a lot and it's just starting to feel untenable. Would love to hear how others have coped with this?

I gave up work which is probably the answer you did not want to hear! In my case I did have two children who were having major problems at school at the same time and needed rescuing from school frequently. I got so stressed waiting for the phone call that I was finding it impossible to do my job properly. I did explore other options like unpaid leave and reducing hours but it was the unpredictably of the time off needed that was the main problem. I do still work very part-time for the open university as that is totally flexible about hours worked and at least keeps my brain active a little. I do miss work, not least because it gave an escape for a few hours each day from worrying about the kids but it is less stressful not going in.

I work P/T now, during school hours. That way I have time for Dd1 when school is over.

but i find it really tough as I end up doing all the housework late in the evenings after the DC are asleep as I cannot do anything during the day (as either at work or commuting or focussing on Dd). DH works long
hours and we do not have any family to help. Dd2 (NT) is parked for long days at nursery so I can make space for 1:1 time with Dd1. all not very ideal and incredibly stressful for me, and it is affecting my health badly but it is the only workable solution for us.

I also fantasise about giving up work but it is not possible financially.

It is all a big compromise rather than a solution.

My DH gave up his career.

I have two dc with asd and work nearly full time. It is demanding and I think for me the most difficult aspect is the fact that organising childcare before and after school is very challenging as I need someone to come here for ds who is severely affected and couldn't be dropped off anywhere. I also struggle when they are ill or have pd days as I can't ask a friend to help and have no family nearby. Most of the time it's ok but it is stressful. On the other hand I get valuable respite in a way by being away from the house and the stresses of focusing totally on asd. I think it all depends massively on finances. If you can afford good help then that makes all the difference. If I had more money then I would get a good nanny and this would make all the difference.

I went from full time to part time so I was their before and after school for DS.they are DS most challenging times so it works well for us as a family.

I was part time and changed my hours further to cope better. The school I work at we're very good at letting me be flexible. Hope it gets better for you, OP.

I work PT 2.5 days a week and switched to work in the public sector. Less money and no career prospects and not as interesting as my previous job, but much less stress and work pressure. After a challenging private sector job I find the targets in the public sector pretty easy to achieve. I get flexi time, can work from home and can switch days around to fit appointments in. DH also works part time - more PT than intended as he is self employed and finds that hard to do PT and with recession etc. Two PT wages do not equal one FT one and it makes no financial sense to do it this way but we found one person at home with a DS who interacted very little with us isolating and left us prone to depression. This way we both work a bit and care a bit and can often both go to appointments. We get DLA HRC and LRM, DH gets carers allowance when his earnings are low and we get extra tax credits and tbh we have found that we manage better on that than we thought. Family treat us from time to time eg help out with holidays etc. We bought our house 10 years ago so are lucky to have a low mortgage although we struggle with bills and can't afford to maintain the house. We figure we will get by like this for a few years as ds really needs us now (6) and is on ABA programme which we need to be fully involved in and also chauffeur him around. We figure the more we put in now hopefully the less dependent he will be on us as an adult. I am looking forward to a pretty dismal retirement on min pension and DH has no pension at all. So like I say its not a sensible financial option but practically and emotionally keeps us just about on track for now. I can't see me ever going back to a FT job now, there is always something going on that I need to be here for, or paperwork to sort. I also find I need to police what goes on at school constantly or School just ignore DS.

Thanks all. So interesting to hear how others cope. It really struck a chord what you said, Agnes, about how independent your DS is as an adult is in part a result of what you put in now. It doesn't help that I'm really not enjoying my work right now - so much 'office politics' going on that I don't care about, while I slowly lose my noodle. All seems so trivial compared to DS's needs... Feel like running away with DP and DS to live off the land and escape it all!

penny I understand that feeling of just wanting to run away from it all!

I freelance. I tried working part time again last year but the commute and the arse of a boss made it unbearable although the fixed, regular income was great.

I really can't see how I can do a proper job any more. In the last 3 years DS has had 3 separate periods of at least 6 months out of school (or being part time schooled) because he can't cope and then there are the months at a time that I have spent trying to support him get back to school. We now want to make alternative arrangements for him but we will doubtless have to fight the LA whose opinion seems to be let's plan again to get him back in school - again.

DH works full time and works from home four days a week so he can cover drop of and pick up for DS2.

We have no help of any sort, financial or otherwise, from family. In fact, I also have a brother with cerebral palsy I have to support and attend care review meetings for too.

We have spent thousands fighting for decent support and for a decent statement over the years. I get very angry when I think how different things could have been if the LA had put in place suitable provision for him three years ago.

It's crazy. iIsn't it better to have the kids well-supported in school and have parents earning a decent amount, feeling less stressed or depressed and paying taxes?

It's worth going on a benefit calculation site to see what you would get in carers allowance (assuming you get DLA at middle or high rate) tax credits etc.

I'm envious that you freelance, Inappropriate. Maybe as a longer term goal I could try to work towards that. After a day like today (bad, very bad) I'm aware that the combination of being so stressed/ depressed and working full time (which I'm doing temporarily at the moment) means I just don't have the emotional resources or strength to deal with DS. He is very, very challenging, and i just never get the chance to recharge my batteries or have the thinking time to work out strategies etc. Think I've realised that I'm not going to be able to stay full-time til the end of my contract (have taken on extra work for a year) but will go back part-time as soon as I can. Think I 'd rather deal with work being pissed off with me than soldier on!

I start and finish work early one day a week so I can pick up the kids. My husband works from home one day a week so that he can do it. The other three days we have an after school nanny. I'm also lucky in that if I work Sundays I'm given a weekday off in lieu so I build these up for the holidays. I was part time (mornings) but was given the boring rubbish work and then sometimes had to deal with meltdowns for the rest of the day so it just made me miserable. This way is much better.

Hi, i can sympathise as i've just had to quit my job too, to take a much lower level one closer to home, so I can spend more time focusing on DD development. I worked out she will have over 100 appt this year & DH is having to travel more for work, so me trying to maintain a career as well was starting to put too much pressure on the family.

If I'm honest I'm gutted about it, as for the past 2 years i've used it as a form of respite, where 3 days a week i was seen as just me, rather than the mother of a severely disabled DD, but in the end it was actually a pretty easy decision to make.

Good luck with whatever you decide x

I have the world's weirdest flexible working arrangement. I technically self employed but within a partnership and I work 0.8 of a job, i.e 4 days per week. But I chose the hours on what seems like a day to day basis. I have an office, and part of a PA. So long as she knows what i am doing and the work gets done, no-one else notices. So this week i am working 9- 6 today, 11 - 6 tomorrow, 11- 6 Wednesday, 8 - 1.30 Thursday and doing the final appointment in my lunch hour on Friday. Next week I am working normally but taking the Friday off.

My job also means I work such additional hours as may be necessary so on occasion I work evenings and weekends.

DH is also very flexible and is joing me for Thursday's appointment and covering an appointment this afternoon.We have DS in nursery full time so always can have childcare covered, but take him out when we need to.

It works for us, but mainly because we both have well paid and professional jobs which means we decided at an early stage we would pay others to be therapists, and provide a lot of directed therapy while we concentrated on being parents. It is hard though and what I don't have is any time for me.