Am I nuts to think I can keep working?

[Eloise73]

DD is a 3 in November. Up to now we've been ok, we have a fab childminder who looks after her 3.5 days a week and our dd loves going there and to the playgroups they go to. I work 4 days a week, DH works 4.5 days, so it works out ok for us with only needing childcare for 3.5 days a week.

However, DD seems to be getting more anxious as she gets older, mornings have become so incredibly stressful, she wakes up crying and screaming and this can go on for half an hour. We have no idea why she does this, we try to distract her and calm her down. But this new thing is making getting ready for work almost impossible.

I actually keep praying for redundancy which sounds terrible in this economy but I just don't know how much more we can keep functioning as we are, especially if DD's needs become more complicated.

We were told she would get worse before she got better but it sure did happen fast...do any of you still work and are you always having to adjust your hours or do you only work part-time? How did you adjust/cope?

Hi Eloise.
What's your daughter's diagnosis, if you don't mind me asking?

I know there are parents on this board who do work, so hopefully they will be along soon.

Unfortunately, I am at the other end of the scale. I used to work part-time, but gave up over two years ago. I really sympathise with you, because I also found it really stressful and complicated. I also used to pray for redundancy.

My MIL looked after dd1 (AS) and dd2. However, we reached a stage when dd1 was refusing to go to school and was hysterical every morning and had meltdowns afterwards. MIL just didn't know how to deal with her and I felt that we were asking too much of her (she had health problems).

I don't want to infer that it's impossible to work -with the right support I think it is - but I know how hard it is and how torn I felt.

Is it an option to reduce your hours (more for your sanity, really)?

Sorry, should have said, DD has autism. We like to think she's high functioning but at her age they wouldn't say anything other than autism.

I could reduce my hours but I really want that to be a last resort as my earnings are helping us with paying for private SALT and hopefully will get us a few sessions at a specialist ASD nursery until we can get funding in place.

I suspect at some point i'll have to look at leaving - or maybe DH (he'd love that lol!). Thanks for your post!

Being a working mum is hard, being a working mum with a beautiful ASD daughter is hard and exhausting.

My DD is somewhere on the autistic spectrum (we're in France, DX is slightly different). She's pretty bright, but huge huge language delay. I gave up work when she was 18 mos as we moved to France and planned to go back when she started school at 3. It became clear by the time she was starting school that she was struggling and not developing on the same lines as her peers. Basically, I didn't stayed home for a long time with her. When she was 5.5 I finally went back to work part-time, but I have a very flexible job where I usually don't work school holidays, and only work when she is in school. This year, for the first time, I'm going to try getting in a babysitter to look after her. There's no specialist ASD provision here before 6, so we decided that I would stay home and take up the relay from school where they could not cope (she was in school but only ever managed part-time). The specialist nurseries are good, but you have to decide if she is best served by a nursery or by more time with you. It's a killer to have to decide. I found myself wishing the other day that DD could just go to school full-time like the other kids and not have to have time off for appointments/speech therapy. But she's gorgeous and adorable and starting to make real progress now, so I'm glad that she has been able to take things slowly for the last four years. I really hope that you are able to make the best decision for you family. It's NOT easy!!

I do and always have worked full time. (DS1 has asd, but he really is comapretivly mild). And we always had a nanny or au-pair. ( With 3 kids it's pretty much the only option.)

However my DH got made redundant this year and so has replaced our au-pair - and I am amazed at how much the stress levels in the house have gone down.

DH doesn't realy like being a SAHD but it is helping so much....

So the answer is you can work full time. Stress levels will come down if you work part time - but only if they don't go up because you're broke :)

I've worked FT too (dd has PMLD), in fact I'm just about to go back after ds.

Like IndigoBell we've always had a nanny - and also used a CM once a week so the nanny hasn't wanted to run away got too exhausted. I find work tiring, but I also welcome it as a break from caring and [guilty]. I also like being in control - I have hated the feeling of being 'out of control' this summer whilst on mat leave and having to beg SS for every tiny thing - it has been hugely stressful. As you say working does help pay for some of the extras which SS won't fund.

Good luck with whatever you decide :).

I don't work, partly because we can afford for me not to if we are careful, and partly because I really don't see how any employment could be fitted around the hospital appts, illnesses, etc.

Our dd2's dx is complex physical and learning.

I am the only sahm I know here - everyone else has part-time or FT work - but then, none of them have disabled kids!

And ALL of them are stressed!

You need to decide how you will fit work around your dd's needs. Does your job involve evening preparation? Can you do any days from home?

Best of luck with whatever you decide.

I've always worked though I went part time for a while when my second child was dx as autistic. I have to work financially speaking, but it is v difficult. I am at home at the moment because of problems with childcarer having to leave early! I have quite a sympathetic employer which helps a lot because there are lots of appointments, meetings and problems to deal with! I do find it stressful because it's hard to give 100% to work when coping with issues at home. On the other hand, being at work means I have other stuff to do / talk about other than my children's difficulties which I think is probably good for my state of mind. It's not an easy decision to make. I think the ideal for me would be to work part time, but this just isn't an option for ever. Good luck with it.

I gave up work when dd2 was 3, money is tight but i still think its the best thing i have ever done, i get to spend so much more time with her (working on speech and social skills) and dd2 has changed so much.

DS2 did go through a v v stressed & anxious stage between 3 &5. I thought I would have to give up work.
I believe much of it was down to the numerous drop off pick ups etc during his week. I would take him to CM, an hour later she would take him to playschool, then pick him up , then my mum would pick him up from her & then me from my Mum to take him home. We had variations on this routine throughout the week depending on my hrs & dh's shift.

We introduced a basic visual timetable for the day, I cut out any unnessesary changes, so he either went ot my Mum or to the CM but never both in one day to keep the transitions to a minimum.
I changed my hours when he started school so I always drop him off & pick him up. He now has a very stable routine & is much ahppier for it.

It does get easier once they are at f/t School, I also would not be able to work if it wasn't for a very flexible understanding boss!

Thank you all for your advice.

At the moment we are going to try and keep things as they are until we know what kind of support DD will get and which nursery she will get into. We may need to have the extra funds for private therapy in place for a while yet.

My work are being flexible but i'm pretty sure when the flexibility no longer suits them it will probably become a huge problem...just have to keep my fingers crossed they don't get too fed up any time soon.

I think the tip of keeping things simple and keepking a basic visual timetable will help a lot. Thanks everyone!

I work part time and although there have been times when things have been rough I've clung onto my job because it's my me-time! How sad is that! But it's true as it's my break from the relentless nature of caring for dd.

My dh also works part time on the days when I don't work, so one of us has been able to look after dc.( ds1 NT age 6 and dd2 SN age 4) If dd hadn't had sn I would probably have increased my hours by now but haven't as 2 days a week is enough but this may change sometime in the future.

We never have much money but we don't do much so it seems to work for us. Neither of us get much sleep with dd so I think I'd be too tired to work more than I do.

My employer is quite understanding and know I'm a carer and if I need to I've been able to reduce my caseload or start late for a few weeks etc and they have been ok - so far anyway. I've also used the staff counselling service to explore all these issues and that has been helpful. Not sure if anything like that is open to you?

It's a tough call and I hope it's a decision that you can come to with time to weigh up the implications and to find out what is best for you all. Good luck.

I also find work is my respite. I'm almost full time but compressed into 3.5 days to reduce outside help. But childcare is getting harder to find, hence the juggle is more stressful than it was. And this means the routine is more variable which causes problems. Can you reduce your hours? If you're getting dla, you're eligible for Carer's if you earn less than abt £100/ week.

We're allowed 6 counselling sessions a year with a counsellor/psychotherapist through my work, my new allotment starts in October so that is something that I may be using...every little helps! Might be a good idea to try to talk this through. I hadn't thought of that, great tip!

Reducing my hours won't work really, I wouldn't qualify for carer's even if I went down to 1 day a week, would need a career change - which I don't mind...but would like to have my redundancy if possible as i've been at my firm a long time and it would be a good sum of money, would certainly help with ABA should we go down that road when DD is older.