2 nights of no sleep at all

[CherryAndLimeMum]

Is it unreasonable to feel like a zombie and be almost unable to function after 2 nights with no sleep at all. I’m a single mum. My 9 year old DD (she’s autistic) often goes 2 nights without sleeping at all which means I can’t sleep either! DD usually goes 2 nights (and she won’t sleep or nap in the day either) without sleeping and then sleeps really well on the 3rd night and then goes another 2 nights without sleeping and so on and on. After the 2 nights of no sleep I often feel like a zombie and can barely function with the sleep deprivation, I still have to work in the day as well whilst DD is at school. This has gone on for years and I’ve tried so many things to help get her in to a better sleep routine but nothing works. She’s also already on the highest possible melatonin dose as the paediatrician won’t give her a higher dose. The sleep deprivation and exhaustion is killing me! AIBU to feel like this?

Do you have any family or friends that can watch her so you can get a few hours of sleep? Could you pay for external help? A carer of some sort with experience of autistic children.

I have only had to have no sleep for that long on a couple of occasions and it was awful. I have no idea how you can do this long term. I really hope you died something to help.

I think this thread has really highlighted the difference between how much support people think is available to families with disabled children vs what is actually available. It’s also worth noting than any crumbs of support out there have to be hard fought for (admin, assessments, chasing organisations, preparing for panel, going to panel etc), and when you’re working, caring for your disabled child (plus their siblings) etc while severely sleep deprived you often don’t have the energy required to go through the process.

The prescription comes from a consultant, that takes years to access and once prescribed, there was no further input from the consultant for either of my dc.

Absolutely this!

These threads always highlight how little people understand the medical or social care systems in the UK.

Its horrendously difficult to access even thr most basic support. Once you get it, yoy have to fight to keep it.