You Are Getting Veeeerrrrry Sleepy

Day 19: Autism Awareness Blogathon

A few years ago I watched a fascinating documentary all about sleep. One of the  stories it told was of a person whose brain switched off the sleep button and never turned it on again. There was nothing this guy could do to get to sleep. He went to hospital where they tired all kinds of things to help him. In the end he became psychotic, his body started shutting down and (take a breath) he died. From getting no sleep.

Many people on the spectrum have sleep issues. It’s exhausting for them and exhausting caring for them as when they are awake, you are too. Melatonin works for some people, but not for others. Massage, oils, warm baths, warm drinks, blockout curtains, regular sleep/wake patterns, white noise machines, you name it, we will try it if it means we might get some more sleep.

image credit: bepositivemom.com

Today a good friend and autism mum posted the following message on our trusty friend facebook.

Well I’ve been a mum for 5.5 yrs now. Sleep deprivation is all too common for parents that have children with disabilities. It’s not like newborn broken sleep, it’s not like teething broken sleep or bad dream waking during the night…. it’s just on a WHOLE different level. It doesn’t go away, or stop all of a sudden because your toddler has stopped teething or baby has stopped night feeds or are old enough to go out have a big day playing with friends and getting worn out. It’s the sort of thing only a parent with a child with a disability that has some sort of sleep disorder could even comprehend.

I used to tell myself when my 2 were babies ‘this waking at night.. its only a moment in time, it will pass, they will grow up and out of it’ and that mind set helped me so much. But so many parents who are in a situation similar to mine and harder, don’t know if it will ever change. Learning to ACCEPT living on little sleep is a must so you don’t kill anyone trying to find a way to ‘get sleep’.

I’m tired, god am I tired…but I can never help myself thinking about parents who have been doing this longer than 5.5yrs. What about the parents out there who have children in their 20’s+ who live with them and still need 24/7 care, and they get up every night for 20+ yrs to help their children to calm, feed, toilet, change adult nappy or fix tubing or to do what ever is needed. I have so much admiration for these parents. It’s a long, hard tiring road.

Will I be one of these parents? I don’t know but it’s the love for a child and thinking of those parents who have been doing this longer than me that helps me get my ass out of bed at night after night after night. I have a few friends that are in the same boat but it is so hard to explain to people what it’s like so I’m just going to put it out there for everyone!

I wish!

Thanks for that tiny little slice of your life Candice. I used to hate that saying ‘whatever doesn’t kill you makes you stronger’ but that was before I became an autism mum.

Now here’s an adults bedtime book read by Australian actress Noni Hazlehurst to cheer us all up (warning – language! don’t press play if swearing offends).

image credit: doubleday

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6 thoughts on “You Are Getting Veeeerrrrry Sleepy

  1. I’m reading this at 5am because Colin is waking increasingly earlier and earlier. And once he’s up…he’s up. And he’s been up since about 4. *yawn*
    Once upon a time, he used to go back to bed. Now…well, now he attempts to sneak around the house. He tiptoes to my room, I hear him breathing, I tell him to go back to his room…he runs across the living room and slams the door. I don’t know who I’m kidding. Mostly just wishing he’d be quiet so his brothers can sleep.

    *yawn*

  2. The book reading cracked me up, Rose! A little humor never hurts!

    Patty and I have been sleep deprived for years. Since he was a baby (nineteen years ago) Sam has never needed the amount of sleep that other NT kids his age needed—except during periods of growing spurts.

    Like your FB friend said, in the beginning you think it’s going to pass. But it doesn’t. Years go by and some of these kids just don’t need the sleep. Most of the time Patty and I get about 6 hours a night. That doesn’t sound bad, until you’ve tried to survive on 6 hours a night for several years—nearly 20 years—then it’s real bad!

    From 2010 to the fall of 2011 when Sam was having seizures so bad, we never got to get any “deep” sleep for fear of him having a seizure in the middle of the night. (I had a cousin die during a middle of the night seizure.) Since Sept. 11th (his last seizure) that hasn’t been an issue—thank God!

    Keep up the good work with your posts!

    • Well I sure do hope it stays that way for you guys and Sam. I know a foster carer who cares mostly for babies and she hasn’t had a good night’s sleep in 28 years! I know you get used to it, but I would love to sleep all the way through the night everynow and then. Or be able to roll over and go back to sleep – oh what luxury!!

  3. So spot on, Rose. Helene has something of the opposite problem – she’s a bit of a night owl, but not too bad. She is definitely, though, not a “morning” person and would gladly stay in bed until 10:00 a.m. If I’d let her. We’ve tried a lot of things to “help” her, but in the end we just stopped fighting it, because that seemed like a waste of precious energy we need for other battles. At least we’ve succeeded in a fairly consistent bedtime and eliminating naps. One small step at a time. :-). And I love THAT book!

    • That book is a winner isn’t it! I totally agree about choosing your battles. Sometimes if you focus on just one thing that is causing the most stress, the other stuff just fades into insignificance. Gotta love that when it happens!

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