Has anyone given up work to care for an autistic child?

[shivony263]

My 4 year old son is autistic and non verbal. We average about 4 hours sleep a night currently and he has started having meltdowns where he injures himself by head banging or punching himself in the chin. He needs constant supervision as he has no danger awareness.
He attends school nursery but not full time and we often get calls to collect him early due to him hurting himself. Yesterday he cracked a window at nursery due to headbutting it. We both work full time so it’s not always easy to leave early to collect him and we don’t have any other childcare options.
We have been discussing me giving up work so I can be there for him full time. I feel at the moment I can’t give my all to work and our son and something has to give.
Does anyone have any experience of giving up work to care for their autistic child?

Just giving you big hugs. I look after my dgs aged 3.5 who is autistic and non verbal with global developmental delay. He goes to nursery twice a week and comes to us 3 times a week.
Could grandparents help at all? You’ve a lot on your plate.

Sorry just reread and seen you’ve no other childcare options. Just ignore my last post.

For a long time I couldn’t work because of caring for DC. Now I work part time TTO. It only works because it is quite flexible.

Does DS have an EHCP?

Have you thought about specialist nursery?

Is it a state school’s nursery?

Does DS take melatonin &/or other medication to help with sleep?

I had to stop working due to my DS's needs - I am back working now but at a job that pays around 25% of what I used to earn. Out of around 10 mums I know with DC with additional needs only 2 of us do any paid work. It is a massive issue and one that has long term consequences for women (it's almost always women) and for society.

I'm not sure what your financial situation would be if you stopped working but when I did, my DH set up a direct debit to cover my pension contributions. I appreciate not everyone is in a position to do that. Are you claiming DLA for your DS? If so, you can claim Carer's Allowance which will mean your NI contributions will be paid (this is also the case with Child Benefit).

On a slightly separate note, what are your plans for DS and school? Does he have an EHCP or are you applying for one? Is there any way you could go part-time? Or could both of you go part-time?

I didn't go back to work after DS was born, we started him in part time nursery and he couldn't manage full time there. He's in a brilliant SEN school now but with transport and the wraparound care situation I don't think I ll ever make it back to work until DS might be in supported living.

@shivony263 hi 👋

I gave up my job to care for my son. Similar situation to the previous posters. I was working but unlike other posters my job was working in a nursing home so minimum wage so to be completely honest I am probably only pennies differently paid with universal credit and my carers allowance than I was doing 40 hour weeks and my sons DLA pays for things he needs, like his safe foods, his excess of bedding etc and things that help regulate him like making sure his (often abused!) iPad is working. So financially it’s made very little difference to me. I just couldn’t do it any more, I worked nights and I was having to get him from school early, even Sen school he couldn’t do the full time table at the start, I was really struggling, I felt like I never slept. I would be sick with exhaustion and my partner ended up bumping into my lovely old boss in the local Lidl of all places and my boss actually told him, tell her to leave. She can come back when things settle down, but she’s like the walking dead. Plus my DS was very violent back then so I’d be wearing Covid masks sometimes to hide my face where DS had given me a fat lip etc. That boss recently retired and sent me a text to say he’d said to the new manager if I ever wanted my job back, he’d always write a reference for me. Really lovely fella. But yeah until my son is in supported living I’ll be home with him. What I miss is my actual job, I hated leaving the girls I worked with or my fave residents. I miss feeling like I was contributing to society, when I read the benefit threads on here sometimes I feel so sick, like people actually hate me and my son because I’m not working, it’s mentally draining. The mums who do work from my Sen parent friends are ones with DC who aren’t violent or they have lots of help. Sadly my DS is violent and can’t go childcare and I don’t have anyone besides my DP, who works full time and he was promoted around the time I left my job, it made no sense for him to leave when he has opportunities to progress.
At least I have some sleep now. But it’s not an easy choice to make!