To stop working? Two dc

[Theantsgomarchingtwo]

Hello,

Can anyone advise? Do you manage to work with disabled children? If you became a carer how did you manage your pension?

I currently work 4 days a week 830-4:30 school TA , my dh and mil help hugely with our dc and I have had quite a lot of parental leave off/ using lunch hours to cover appointments. My dh new boss isn't as understanding and now is required to be in the office min 4 days a week. MIL helps hugely esp with the hosptial stays but cant commit to more than one or two afternoons a week.We don't earn enough for a nanny.

So my eldest dc (8 nearly 9) is working at prereception age, is asd and preverbal. Great kid but hard work. We have managed to secure a specalist school, but cannot find a childminder to do pick ups and drop offs and I'm unsure how we are going to manage being there for transport pick up & drop off. We also have a diary full of SALT, OT, school sen reviews and dietician appointments which are never ending.

My youngest (5) was "okay" until two years ago when it was found they had a brain malformation which causes seizures - tonic-clonic, absence and drop seizures. They've been on several medications but with little success controlling them. The school oftern call for an ambulance at least once a week, seizures really knock him for six and can take several days to recover (or even weeks if they have a status epilepticus seizure and require hdu) they've regressed in all areas from speech, mobility and cognition, behaviour . It's been quite difficult to come to terms with. He also has a diary full of neurological appointments, eegs, physio, therapy salt etc. He needs a ehcp but I can't seem to find the time to apply.

I'm honestly at breaking point. Eldest doesnt seem to sleep well and my youngest has a seizure alarm which wakes me when I finally do get to sleep.

Would it be unwise to stop working and bexome a full time carer? I am thinking as a short term measure until I can think of a plan of what I can do. I have no friends to ask on what to do :(

Thank you
Mel x

Your situation sounds similar to mine. I’ve got two children with asd and adhd (16 and 13). Both in different specialist schools and the 13 year old has epilepsy and is profoundly disabled no speech, challenging behaviours etc. I’ve found it very hard to manage children with such high needs. We recently got a diagnosis of epilepsy which adds another complex layer but has been really scary so I partly understand what you’ve been through and it really takes its toll. Your nervous system is constantly on high alert. I’ve found not even my husband really understands it even though we’re parenting the same children.

Mentally and physically I’m exhausted. I was a sahm until the 13 year old was 5 and then picked up what I could. I’ve just reduced my days to two days a week as I’m exhausted from being a carer for so long and I’m having to do a 40 minute round trip to collect the youngest from school each day.

How is your financial situation? I know on mumsnet there’s a lot about not being reliant on a man but I think it’s different when you’re caring for special needs children. Could you reduce your hours? I think if you’re burnt out and stressed you need to step back and focus on your children and actually being able to function. You’re the care infrastructure and if you fall apart, there’s no one else. What’s your husband’s take on it?

People mention a loss of identity without work but I’ve found it just adds more demands. I work remotely so my contact with people is minimal. From your post, you sound exhausted and like you’re just about functioning. Could you take unpaid leave to give you some breathing space? If not, I’d be tempted to leave to give yourself some room to breathe.

I think it would be wise to look at either more parental leave, sick leave or a sabbatical to buy you some breathing space here and now. It sounds like you are at risk of carer burnout. It would give you time and space to decide on your longer term course of action. I think it would be perfectly reasonable to decide you can’t work at the moment. There is only so much anyone can cope with.

I gave up my career more than 2 decades ago. There was no other option. 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 and particularly the last couple of weeks, I think I should resign. We haven’t always been able to afford it, but when we have, I have paid into a private pension.

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 - although there may not be anything suitable, it depends on your area.