Did you have to give up your career?

[SENMummyto2]

Hello,

I posted an iteration of the below on the AIBU thread and had some good replies, however I’m not sure how many have actually lived this life, so thought I would ask here too.

I have two children with SEN, aged 8 and 5. One has ADHD (medicated) and the other is AuDHD but too young for meds. Both are in mainstream. We’ve been through months of school refusal, suspensions and reduced timetables with both.

My eldest is doing better now, though we still have explosive meltdowns at home and occasional school refusal. She has an EHCP. My youngest is really struggling – EHCP issued, but mainstream said they could meet need and clearly can’t. Suspensions are ongoing, along with severe dysregulation and violent meltdowns at home. Neither child can attend paid childcare or clubs as they’ve been asked to leave.

I have a job I’m good at and genuinely like. I’ve reduced to school hours and work have been flexible, but I’m completely burnt out. I never know if a suspension is coming, if school refusal will hit, or if I’ll be dealing with violence at home. I’m exhausted from constant advocacy and now trying to secure a SEN school place for my youngest. It feels relentless.

I’m slowly realising I might not be able to have it all. Financially we’d be OK – my husband is the main earner, though he has a very high-pressure job and already does his fair share.

im seriously considering giving up my job. I’ve worked so hard to get here and never wanted to rely on a partner financially, but I’m so tired. I’ve reduced my hours as much as possible and my role just isn’t compatible with needing to drop everything at short notice.

Has anyone else had to give up their career? If so, do you regret it? I’d love to hear the pros and cons.

thank you!

I did. More than 2 decades ago. I haven’t really thought about if I regret it. There was no other option. Pointless dwelling on it. For a long time I didn’t/couldn’t work at all. Now I work very part-time TTO for an organisation who supports families who have disabled DC. It only works because we have all the support with DC available and a lot of the job can be flexible. A lot is paperwork and I can do that overnight (when/if DC sleep). Even then, there are times, like the last few months, I think I should resign.

Have you had social care assessments? A carer’s assessment for you and assessments via the children with disabilities team for DC. Also look if there is anything suitable as part of your local short breaks offer.

Have you considered a PA/carer or SEN nanny rather than traditional childcare?

If your preference is for SS but the LA has finalised the EHCP without naming your preference, are you appealing the EHCP? Are all the suspensions lawful? How many days has DC been suspended for? Have you reached the threshold for AP? If DC is unable to attend school full-time, is AP in place?

I've had to. Did quite a high flying job before DD was born but didn't go back after mat leave as DD seemed quite high needs and then eventually diagnosed with ASC. After years of not being in full-time work I started supporting in the local primary as a TA. Once DD started school we had to move her from state to independent due to lack of any sort of support. I joined the school too and retrained. Now we both go to school together and have the same hours. I'm also around during school holidays. DH is the main earner but my salary plus staff discount makes this arrangement work for us. It has helped DD knowing that I am around, not that she seeks me out. It's not ideal and there are times when I feel like I have given up so much, but watching DD settled at school and enjoying her life in her own way seems worth it.

Yes, I gave up my career. I suppose that I am content with life as it is ... There's a thread on aibu about happiness and the pandemic was my last truly happiest time, as demands were so low. I dont believe that I've thrown my career away though and if the future were to allow, then I'd definitely love to go back to it when my DC are older.
I completely empathise on the parent on child violence, and the anxiety about whether you'll get notice of having to collect due to suspension. We also have an EHCP. It has been so draining doing all the advocacy stuff over the years. Thankfully we haven't had a suspension this term, but if suspensions were to get really frequent I'd have to quit my job and pull my child out of school (I just work 2 days a week, school hours). Also thankfully DH is breadwinner and my earnings are pocket money really!!

I have been considering it. I’ve always worked flexible jobs around the kids (two have asd and adhd - both have high needs and ehcps and are in different specialist schools). I work term time only and recently dropped to two days a week as I was feeling burnt out. The youngest is 12 and profoundly autistic, often violent, recently diagnosed with epilepsy and I have to collect from school as the taxi company only have someone to take her in the morning as she needs to travel alone and no one wants to bring her home. So I do collecting from school and for most of the end of last year I had to take her to school.

I’ve just finished a big project for work and am exhausted. The constant need to be switched on supervising my 12 year old especially as she has fits. Mentally I feel on my knees. I’m anxious all the time and I’m finding with work, I just have nothing left to give. I’m doing the bare minimum because I literally have nothing to give.

My husband is a higher earner and a very senior job and although he does as much as possible because of the nature of his role, caring falls to me.

I don’t know what the answer is. I know for me if I give up my job finding remote work that’s term time only will be so tough. My mum would say keep working. But she doesn’t really understand the toll caring takes on you.

Could you take some time off sick?

The big thing to think is that you provide the care structure, if you fall apart what then?

We’ve got a social worker, we’ve had an assessment, but there isnt help. My youngest is very complex so can’t access even Sen activities.

It’s a hard decision. I’m very mentally worn out. I’ve been caring for 15 years and I know the youngest will need full time care for the rest of her life. I think about whether I’d miss working but I have minimal contact with people. I would miss the money but I’m very conscious that I’m very withdrawn and can’t be the easier to be around.

What does your husband think? It sounds like you’re really tired and could use a break.

@WonkyEdges I would push back on children’s services. Even if DD can’t access SEN activities, there are other options. Children’s services could look at carers. They often say there is a crisis in care. There is. But there is more they can than shrug their shoulders and say nothing they can do. They can fund at a higher ratio and provide more funding for a higher, potentially much higher, wage. You could also look at children’s continuing care funding.

DS1 has children’s continuing care funding. There wouldn’t be any options for DS1 if they only provided 1:1 and NMW or just above. DS1 has 2:1 and we have funding for carers with a much, much higher wage than is typical.

If you don’t want to collect DD from school, you can challenge the LA’s failure to provide transport, including via JR if necessary.

@2x4greenbrick, I’ll have a look at that thank you. We’re due to go to panel for direct payments to try and get a carer. People locally have struggled to find people. We only have one respite centre, 40 minutes away and it’s full.

The taxi company just don’t have drivers who can take her. Most don’t want to but that aside they’ve got other runs. They are recruiting for drivers but to be honest, I do understand as she’s incredibly challenging so even if you do find a driver, it’s a tough sell. All the taxi companies locally are looking for drivers. No one really wants to do it.

@WonkyEdges money talks. For carers and taxis. The LA may have to pay a taxi company a higher fee than they would like, but if they offered the right sum of money, the LA would be able to fulfil their duty. In the meantime, are you at least receiving mileage? Similarly, a higher wage will attract carers.

Company literally can’t find people even with a higher rate. LA are doing their duty, they just can’t find anyone to fulfil it. We do however get our mileage paid which is something and although it’s not convenient, it does lessen the worry for me that she hasn’t been grumpy/annoyed the driver/hit the driver/thrown stuff out of the windows.

@SENMummyto2, both mine started on meds young. One was 6. The other was 4 (not a surprise that it was the now 12 year old who started them so young). Have you tried the paediatrician again? That might help. Although the meds do sadly wear off for us by about 3pm.

@WonkyEdgesive been told that I can’t even refer him for an ADHD assessment until he turns 6 and also that meds cannot be prescribed until 6 - I’ll have another look around though, but we do have a private EP on notice to book in an assessment as soon as he turns 6.

my eldest deffo wears off by then too, but we have a top up dose to give her when she gets in from school.

i hadn’t really considered going off sick, but maybe I should. It really is making me unwell

If you want transport and the LA isn’t ensuring that is provided, they aren’t fulfilling their duty. Their duty is absolute. As LAs have been shown time and again, claiming lack of resources or staffing isn’t a lawful defence. If you did want to take it further, you can.

It is unpaid but if you wanted to take some time off but didn’t want to go down the sick route, you could look at parental leave.

It’s a consideration maybe being signed off. At least then you could take a period of time off and go back to something. Would work consider unpaid leave as well?

I’ve found it really hard to balance the kids needs and work. I’ve had to take any old job so I’m doing something I’m not really enjoying and has meant having to learn a load of new skills. I worry I’d be a bit bored not working but I also know I’m not able to give work my full attention. It’s another demand when my nervous system is absolutely wreaked.

I did. DS was permanently excluded from mainstream when he was 6, a week after my dad died. I was signed off with stress for 6 months. He was at home that whole time while the council failed to provide any education (we later got compensation). The mainstream school thought they were doing us a favour, as they'd been told there was no possibility of special school for any children unless they were without education at all. When we did finally get him into a special school (the fight for which was basically a full time job in those six months), I tried going back to work. But by then he'd learnt that not attending school was an option (having spent those six moths wanting to go to school and being told none would have him). So, he started refusing school and my work became impossible. I left and was at home with him for a few months. Got cancer, focused on chemo while DH took six months off to care for him this time. Recovered, things settled, tried to go back to work again as a part time freelancer. Earned lots of money and felt really positive, then DS moved up a year, didn't gel with his teacher and started refusing school more and more. He hasn't been in at all for a couple of months now. I gave up the freelancing and have accepted that my career is over now. Every time I've left & gone back things have moved on so much it's impossible to keep up now.

The frustrating thing is that I had a well paid, reasonably flexible (fully wfh but with lots of client calls), senior job with good prospects. DH earns a lot less than I did, but in a prestigious vocational role he was unwilling to give up. So now we have nowhere near enough income to keep afloat and I'm pretty resentful being stuck at home all day every day with no social contact, no pension and no prospects for the future.

My advice? You probably will have to give up work, I know very few parents of SEN children who both work (especially full time). It's absolutely exhausting having to fight the system and try and do the best for your children. Anyone who hasn't been through it can't comprehend the stress levels involved just in the day to day. If you felt you needed to take sick leave you're probably absolutely justified and maybe it would give you some breathing space to think about what's next.

If there is any option of some sort of part time/flexible/low stress/completely different way of working, consider it. The parents I know who are in the best position are the ones who have this in place, whether by luck or design, either for one parent or both. Completely closing the door on working life is traumatic and there are so many downsides - financial and emotional. Your DH may earn well but there are so many unknowns in the future - what if one of you becomes ill or you split up? If you can find a way to give up the stress of working full time but still keep your hand in and earn a little money, that's the ideal. Although of course, if it was that easy we'd all be doing it!

@namechange0998776554799000, that all sounds so tough for you. I’m so sorry. We spent a year out of education (well school would only let her in for an hour or two a day) and it’s so tough.

I think there’s always the worry about the future and divorce. It’s a huge worry for me that my husband could get fed up and leave and then I’m left with nothing. My salary would barely cover anything if I was on my own and I would stand no chance of working full time.

I think if you’ve got children with very high needs, the stress it takes you on you mentally is so high. I think if you can get something that is super low stress and flexible it’s perfect but that doesn’t feel that easy.

I gave up my career when eldest was 9 and got a NMW job for 4 days per week that fitted around extended school hours (school ran till 4.45). 2 children, diagnosed with ASD, PDA, AuDHD, ARFID, DCD, OCD and anorexia between them. It was a huge drop in earnings, I now earn less than 1/3 of my previous salary, but the 1 free day each week and having no responsibility once I've clocked out were essential. The free day and work free evenings allowed for hospital and therapy appointments and admin. But I couldn't reduce work any further. I do enjoy working and need it for my mental well being. I also need the money. It's a small contribution to our household income but it pays for nice things like a holiday and it makes me feel better to be able to contribute towards households expenses, even if it is just a small fraction. It would never be enough to live independently, but luckily my husband and I not only like each other but are way too tight to ever contemplate anything as costly as a divorce and running 2 homes.😂Now life has calmed down so much and kids genuinely seem happy and chilled (we took them out of school and EHE. They do a lot independently during the day and I only sit with them every evening and on weekends), I'm tempted to get back into a proper job ft, but worried about rocking the boat, and I also don't really want to give up my current job - it's minimum wage but it's actually so nice and chilled, I'd almost pay to do some/most of it.