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When I Don't Get Enough Sleep as a Special Needs Parent

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According to the Mental Health Foundation, “Sleep is as important to our health as eating, drinking and breathing.

Well, that’s just great, isn’t it? Because for some parents of children with disabilities, sleep deprivation can come 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 bedrooms to self settle or play. Maybe they “should” be tired, but they’re not.

Laura Rutherford's son, Brody
Laura’s son, Brody.

Others have children who may require medical care throughout the night, and when they aren’t up providing it, they may be lying in bed thinking about it or the next alarm call.

Then there are some parents who just can’t switch off at night and have too much on their minds, making it impossible to fall asleep, let alone get a good night’s sleep.

It seems to me that some parents will be affected by not just one but all of the above.

Add everyday life to the mix, which, of course, can have a lot of add-ons as a special needs parent, and sometimes, well, you just need to hide in the bathroom. It’s not easy.

For me? Well, I know it could be a lot worse, and I’m grateful. However, it’s not quite ideal. Our son, Brody, tends to wake up in the middle of the night and come into our bed and then wake up again at 5 o’something. I say our bed, but 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’m aware 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.

Unfortunately, it’s not so simple to stop the worries that can keep me up at night: seizures, schooling, Brody’s future, the what ifs, should haves, could haves and would haves. Sometimes I lie in bed, and my brain just won’t shut up.

I’m far from qualified to give out advice about sleep, and, to be frank, I’d feel like a fraud trying to. I’m probably sleep-deprived, too, but compared to others, I know I’m fortunate. However, I also know lack of sleep is downright draining, and boy, do I empathize.

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. The “wide awake club” has no age limit, medical care during the night doesn’t just disappear and, well, sometimes neither does the worry. It seems like 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 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. Try and give yourself a break any 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. I believe love conquers all things — it really can — including that tiredness.

Follow this journey on Brody, Me & GDD.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 21, 2016
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