According to the Mental Health Foundation, sleep is as important to our health as eating, drinking and breathing. Not only that, but poor sleep is linked to physical problems such as a weakened immune system and mental health problems, such as anxiety and depression.
Well, that’s just great isn’t it? - because for many parents of disabled children, sleep deprivation comes with the territory.
For some, their kids will not sleep – preferring to join the “wide awake club” in the middle of the night or wake up at the crack of dawn. No, you can’t just leave them in their bedroom to self-settle or play. Yes, yes – they should be tired – but they’re not - melatonin or no melatonin.
Others have children who require medical care throughout the night and when they aren’t up providing it, they are lying in bed thinking about it all or the next alarm call.
Then there are the parents who just can’t switch off at night and instead have too much on their minds making it impossible to fall asleep, let alone get a good night’s sleep.
Sadly, some parents will be affected by not just one but all of the above.
Add everyday life to the mix – which of course has a lot of add-ons as a SEN parent – and sometimes, well you just need to scream into a pillow or hide in the toilet. It’s not easy.
For me? Well, I know it could be a lot worse and for that I am extremely grateful. However, it is far from ideal. Our son Brody tends to wake up in the middle of the night and come in to our bed (and then wake up again at five o’something). I say our bed, to prevent further disruption to our son and baby daughter's sleep, I currently sleep in our daughter’s room on a camp bed and Brody frequently sleeps with Super Daddy. Yes, I am aware that this is far from normal, however, it’s our normal and at the moment, it works for us. Doing what works for you is so important – who cares what Becky thinks with her typical children who sleep 12 hours a night (oh what we’d give for 12 hours!). She has no idea.
Unfortunately, it’s not so simple to stop the worries that can keep me up at night – night seizures, schooling, Brody’s future, what ifs? and should have, could have, would have. Sometimes I lie in bed and my brain just won’t shut up.
I’m far from qualified to give out advice about sleeping better, and to be frank I’d feel like a fraud trying to. I too may suffer from sleep deprivation, but on a larger scale, compared to many, I know I am fortunate. However, I also know lack of sleep is downright draining and, boy, do I empathise.
Tired of being tired. Tired of pretending to be strong. Not remembering what it’s like not to feel tired.
Unfortunately, there isn’t a magic cure for many of us. “Wide awake club” has no age limit, medical care during the night doesn’t just disappear (I wish for you that it did) and well, sometimes neither does the worry. No amount of sleep could cure the tiredness we feel at times.
So, from one tired parent to another, all I can offer is this – be kind to yourself.
Don’t beat yourself up if you have PJ days, look to YouTube to entertain your child (God love those surprise eggs) or reach for the snack cupboard, which on some days can give you brief respite. Guilt is something that comes with the territory when you’re a parent and it’s tenfold when you’re a SEN parent. Try and give yourself a break whichever way you can, so you can get some rest. Even if it’s not as much as you really need.
Keep your head up Mama, and your heart strong. Love conquers all things – it really does - including that tiredness.
Laura is making it her mission to get supermarkets to stock affordable nappies in larger sizes for disabled children, support Laura's petition here.
The content of these blogs/webpages reflects the thoughts, opinions and experiences of the individual writer and does not reflect the views of Family Fund. Always consult your doctor or other medical professional before taking medical action or changing your or your child’s health routine.