Working mums with children with ASD/special needs, What do you do?

[L1991]

Hi,

I am just wondering what other do for work?

I currently work as a Health care assistant on the staff bank so can pick and choose my own shifts which is great and there are always plenty of shifts but i have been studying human biology with the open university and re sitting my science GCSE and have a place at university to study occupational therapy.

Im unsure what to do at the moment as DS behaviour is draining, currently going through a diagnosis process for ASD, has sensory processing disorder and possibly ADHD. i feel like i am not coping with it all at the moment and not sure if i can hack 3 years at university and then even when qualified maintain a career?

I guess im wondering if anyone has done it and succeeded in being there for your children ( i also have a daughter) and maintain a professional career. I worked on a maternity unit until the week before easter holidays as a support worker and done that for two years and managed but had none of the stress.

I feel i am being selfish, plus not coping, i have exams coming up and feel i will fail because i cant concentrate and DS will always come first. I dont know if im having a moment or i should throw in the towel and work flexibly as a HCA on the nurse bank.

Help :(

most of my friends with disabled Children have small part time roles or gave up work all together. dont know anybody with a ft job let alone a proper career. I think the main obstacle is childcare (before and after school and during school hols).

I gave up my proper ft job and now work part time as an admin in a small office.

I work 1 day a week for minimum wage when my husband or mil can mind ds (autism). It's just to give me a break more than anything else as the money is rubbish. I would love to work more in a 'proper' job but childcare are just seems impossible. I don't know anyone working full time with a disabled /SEN child. And most don't work at all. Those that do work have family who can provide childcare.

I have a post graduate degree and years of professional experience and it makes me sad that it is going totally to waste. But having said that my DC need me and that comes first at the minute. I'm also maxed out on stress from caring for ds1 so couldn't cope with a more pressurised job at the minute even if childcare miraculously appeared.

OP, unless you have a very solid support network that can regularly and extensively help with childcare for the coming years, I probably would keep doing what you are doing now. That is actually more than a lot of mum's of children with SN manage.

I would differ from the majority here. Work is how I keep my sanity- yes, it's stressful juggling it, and you always feel like you're short changing one at the expense of the other- but it's worth it (usually! Obviously there are bad weeks)

Also, it costs a lot to raise a dc with SEN, and I couldn't cope with financial struggles on top of all the other stuff. And if you want to be an OT, be aware the system of NHS funding your bursary and fees is being abolished very soon, so it's possibly better to study now, and avoid racking up debts later.

I do long days twice a week so I can do school pickup on the other days, and have cut back on my hours to help my stress levels and the dc's needs. Work have been flexible with start times so I can do my own drops-offs. I pay a fortune in childcare - but it's worth it to have a phenomenal childminder for whom the dc's additional needs are just not a problem, and who is reliable, flexible and provides much of that solid support network that whatamess talks about

But Meir you are able to differ in view because you do have childcare and a supportive employer. Those are like gold dust so many people don't have that option unfortunately.

Thanks everyone for your replies. Really re considering my choices now. I do have a great childminder,she is fab with him but to be fair he is only there 2 days a week, 1 and a half hours in the morning and an hour in the afternoon. So i have no idea how he would cope being there more often. Guess ill sit my exams and see what happens.

We have had such a great year since he has been is a special needs unit but things can change, as his behaviout already has lately.

And yes Meir in aware of the nhs bursary and funding being cut which means i couldnt really afford to do it in a few years time.

I work with children with disabilities and yes its tough managing that and my child thats why I moved from Sld to mld and it has made a difference, although there are times when ive had a real bad time with my son where I feel like i cant do both and not so long ago almost packed my job in as he was kicking off everyday going into school.

Meir, that sounds actually doable in your case. but most employers are anything but flexible and no childminder will take my child. It is really hard to find a good childminder who is able and willing to meet the needs of children with complex needs. Mine is severely autistic, with severe learning diffs, only limited speech/receptive language. DC is 8 and no one would touch her.Starts already with health and safety as she would needs 1:1 on school runs and basically means CM could not have any other children at the same time.

Very aware I'm unusually fortunate in my job- and yes, although our dc are relaitevely straightforward, the CM has had to restrict the other dc she takes to allow for our dc and their needs. DH also had to make some adjustments at work

I work four days a week in a stressful job - don't want to say what for outing reasons. I'm the main earner and DH and I juggle between us, he works 3 days pw. It IS possible but only because DH works part time.

CM had middle dc (NT) from 3 months- then youngest (ASD awaiting dx) from 6 months- I'm sure it helped that the arrangements pre-dated the SEN.

Eldest also has ASD/ADHD - but didn't start with CM until much later, as wasn't compatible with the other dc she had at that time

And yes, that period was a real struggle; various arrnagements that all fell apart

I still work in the profession I had before having children.

I'm extremely lucky that my employer (an NHS one) is very flexible and lots of people work part time hours.

I now work school hours 4 days a week so my DD (ASD) doesn't need childcare outside of school. My youngest goes to a childminder.

Our biggest difficulty is the school holidays. DH and I try to cover as much as possible between us with our annual leave. We're also very lucky as have relatives who are willing and able to help. Unfortunately they all live a couple of hours drive away, so help is limited because it usually involves an over night stay on the sofa bed - but we are very grateful.

I work as an ATA in an SEN school...but was always a TA before having children and before having a son with SEN. Part time, term time only.
Sometimes my brain is frazzled but I do like feeling that if I'm not with my own son... I'm supporting other children! (And on very tricky day at work I just try concentrate on all the strategies I'm learning and their future benefits for my own family.)
If I could stay at home I probably would...or reduce hours...however we need the pennies.

xx

I work full time term time only currently and have been lucky to have some flexibility to work through lunches to drop off and pick up a couple of times a week. We also live very close to both work and school. However dd really struggles at school and I worry whether she will be able to stay in ms education in the future. Also she does go to after school and breakfast clubs but not for long hours as we work so close and my hours aren't late usually. However I don't know if this will stay the case as work are facing a takeover from August and I am due second child at end of August so I will have to see what the takeover brings. I also don't know about keeping full time hours and childcare costs so it's all a bit up in the air... I agree u need a combination of support, flexibility and in our case proximity to really make it work.

Hi I am an Occupational Therapist working 3 days a week in an out patient unit. I have 2 children, dd age 8 and ds age 5 who has suspected ASD and ADHD, We are currently under the paediatrician and awaiting further assessments. I am very fortunate as I work in out patients which gives me the flexibility to rearrange clinics if I have to take time off due to child sickness etc. and also have a very supportive employer (NHS one) who allows me to have this flexibility. In my experience I have been able to continue at work because my children attend a before and after school club and all the staff are aware of my sons difficulties, I also have supportive in laws who help out occasionally. Despite this excellent support it can still be very hard at times and the only thing that keeps me working is that I really love my job:) I think as a profession OT's are usually more aware of the challenges we face. Don't make the decision on a bad day.

I work FT in a senior public sector role, DH cut back to 3 days a week when we had DD. My oldest friend is our childminder and she does the other two days. We couldn't use standard childcare and grandparents are too old and frail to help out. We 're very lucky with our set-up and I love my work, but it is stressful in itself and it seems to be getting increasingly hard to balance DD's needs and frequent appointments with work. I find myself thinking more and more about jacking it in and running a bookshop instead ...

I teach. It's been a rocky couple of years, with exclusions and cahms referrals, but DS is doing well at the moment (touch wood) so I'm managing to work my 2 full and 3 part days a week.

I still have my mobile in my pocket or bag on vibrate though, and the school and I have a system of ring, hang up, ring and then email if it's urgent. Thankfully I teach secondary so can return calls within a few minutes if I ask a teacher in the next room to cover.

I'm a part time solicitor. I work 2-3 days a week, always have, since I returned to work seven years ago after having my eldest. I have a neuro typical 8 year old DS and a 3 yo DS2 with severe speech and language delay and ASD.

We have a nanny (live out) for the days that I work.

I often contemplate giving up work, as I feel permanently knackered, and struggle to fit everything to do with DS2 like appointments, school visits etc into the week. And DS1 needs me too. And DH works very long hours and cannot therefore be relied on to be hands on. And, inevitably, it's me that comes at the bottom of the list.

But I can't imagine not working. I get loads out of it, not just the money, and would struggle to walk away from it.

I work on a part time, term time only contract in a professional non teaching role in education.
Really I'm clinging on by my fingernails at the moment. I have DD1 with complex difficulties that require lots of appointments, contact during the day with her placement (I too have my mobile on me at all times at work). I can't use childcare for her at the moment so have an after school nanny for my other two DC and work my hours around DD1 drop off and pick up.
My employer is very sympathetic, but there are limits, and I fear my job is not getting the best of me at the moment, and neither are the DC. The only thing that keeps me working is that I love my job and worry that if I give it up when things get better/ more under control (which I hope they will) I won't be able to go back.

I continued to work, in fact work longer hours than ever now, DH retired from his career completely. It made sense that way as I was the main earner, and DH's job took him away from home for long periods, which is no longer viable.

I work 20 hours per week and use annual leave and dh's annual leave for school holidays.

Like others who work, I rely on my employers flexibility. Mostly it's OK, but some days are almost impossible - I have 3 DS, one who has ASD and another with type 1 diabetes and it is quite common for me to get called out because my son's cannula has come out or because my other son is having a violent, swearing meltdown at after school club.

I work on a flexi clock which means that when dh is on annual leave during the school hols I work really long days to make up the deficit and build up extra hours.

I'd say go for it op - just take it day by day, hurdle by hurdle.

So good to see everyones replies. Ive decided to go for it and what will be will be. If it dosent work out then at least i tried. Thanks everyone foe giving me an insight into how you do it. Gives me hope that it can be done