Sleep Deprivation in Parents / Carers of Disabled Children
Sleep deprivation comes with the territory
Many of us who have children with complex needs live life with a deep sense of exhaustion, I write this blog not as an expert in sleep, but as an empathising and experienced sleep-deprived parent who has hidden in the bathroom too exhausted to even cry, more than once.
For many parents and carers normal everyday life has the extra challenges of managing sleep disorders, special dietary needs, medical care, adapting to ever changing behaviours and situations as well as navigating everyday life outside of parenthood, it’s no wonder how sometimes trying to decide what to make for dinner can be an overwhelming flood of emotions.
When our children struggle to sleep whether they can’t regulate to go to sleep, wake constantly in the night or wake at the crack of dawn, or have to be woken for medical intervention and can’t go back to sleep easily; you don’t always have the option to leave them in their bedrooms to entertain themselves. You don’t have the option to soothe your own mind once they finally go to sleep because the million thoughts and job lists and worries that race around your head didn’t get the; ‘within working hours only’ memo.
My son James
In my experience, my son James would go off to sleep no problem, even now at 19 he’s head down and you could hoover his pillow and he wouldn’t wake up.
After he would go to bed it was my time to do the house admin, catch up on work, tidy up, meal plan for the next day, sort uniforms for the next day and all the other jobs and then by 11pm i’d be winding down or at least trying too.
But then came about 3am – 4am and that was him awake. And my gorgeous boy James had a rule; it was one up all up. There is no stealth ninja in him, the lights are on trailblazer style but then he would like to switch them on and off constantly. As a hyper vigilant non sleeping parent that would sound really loud to me. No fidget toys in the world were as exciting to him as the actual wall light switch.
The TV or radio would be on, the doors didn’t appear to have useable handles with him and again he’d like to open and close doors constantly. I’ve had a few floods from the toilet at 5am to deal with as he’d block it but not intentionally, then after all of that he would settle to play and would be as loud as he was happy and content. I was not happy and content and on 3 to 4 hours sleep a night, 7 nights a week then working 10 hours a day as a trauma nurse and then we added a baby into the mix…there was one point that life was so bleak I could hardly see a way forward on simple tasks.
The reality you come to understand
There are no guaranteed respite milestones to anchor too such as independent self-care in hygiene, dressing, safely having time on their own and making choices. Not knowing when those milestones will be reached or if they will ever be reached cracks resilience that little bit more.
It’s a constant emotional roller coaster ride and how do you actually switch that off at 10pm at night so you can bank a good 8 hours? You can’t. There is no quick fix with sleep deprivation and the exhaustion can feel relentless.
Sleep deprivation is the fast track to fatigue
Fatigue is more than feeling tired, it’s an exhaustion that cannot be eased by simply getting an early night backed up with a lie in the next day, banking a good night here and there just doesn’t touch the sides. The Mental Health Foundation states clearly that “Sleep is as important to our health as eating, drinking and breathing.” Truth is that for some parents of children with disabilities; sleep deprivation, fatigue and exhaustion comes hand in hand with the role of parenting.
How does fatigue impact you?
Fatigue impacts health, cognitive functioning, creative thinking, a problem-solving outlook but it also obstructs the ability to cope. What is your experience?
How do you find your sleep patterns?
If sleep disturbance affects you, how does it affect you?
What kind of support would help you?
What works for you what doesn’t?
We are considering doing some more support around sleep for parents and carers so your input is invaluable to steering us in the right direction in helping us deliver some useful resources.