A Hard Day's Night: When a Child with Autism Won't Sleep
Parenting Special Needs

A Hard Day’s Night: When a Child with Autism Won’t Sleep

A Hard Day's Night: When a Child with Autism Won't Sleep

By Holly Gaunt of Do You Speak Autism

Sleep? What’s that again? Oh yes, I think I last had some in 2009.

Okaaay, I can hear you saying. Not another mommy blogger moaning about sleep deprivation! We’ve all been there. Get over it.

No, is my reply. No, you haven’t. Unless you have been an Autism parent, you really haven’t.

After the initial months of broken nights that everyone expects with a newborn, James didn’t seem to be too bad of a sleeper. I was a no-nonsense parent: we followed a bedtime routine and it seemed to do the job remarkably well. Until, at the age of two-and-a-half, he finally figured out how to climb out of the cot, and that was it. As in, that was the last time he slept.

Every evening, we would watch him get increasingly hyper the more tired he became. I’d heard the phrase “bouncing off the walls,” but I’d never actually seen it happen before. During this time, my husband and I would take turns camping inside his room in darkness, endlessly putting him back into bed. As you can imagine, this did wonders for our sex life – NOT.

Around eleven, midnight – sometimes even later – he eventually passed out with exhaustion.  It was like living with the Duracell Bunny.

When James woke up again, however early that might be, he was up for the day, usually jumping on our heads. Seemingly overnight, our lives had become hell.

After a couple of months, by which time we were seriously starting to question our sanity, we fell at the feet of the pediatrician. Please! We begged. Can’t we just sedate him?

Er, no. But she did prescribe the next best thing, which was synthetic melatonin. It comes in a powder form, which we simply mix in with some of the purée fruit pouches (he now refers to it as his “sleepy fruit”) and hey, presto – 30 minutes or so later, he falls asleep.

Brilliant, you must be thinking. Problem solved. Well partly, yes – melatonin has helped the situation because we now have our evenings back. But the thing with melatonin is, it isn’t simply a knock-out drug. Its role is to send a signal to the body that it is tired and needs to relax and allow sleep to take over. But it doesn’t make you tired if you aren’t tired in the first place.

We soon realized this when it became apparent that while melatonin might settle James, it didn’t stop him from waking up again at 2, 3, 4 am… 5 am if we were really lucky. Giving a second dose of melatonin at this stage is pointless because having had a few hours’ sleep, James feels fresh; he isn’t tired.

The trouble is, James doesn’t really understand the point of sleep. It’s no use leaving him to “self-settle” because he simply will not do it; he’ll just get up and follow you out of the room. Repeatedly. So ultimately, our evening and night go a little like this:

 

5-6 pm – What we like to refer to as the witching hour.  The kids (yes, we have two; what were we thinking?) are tired, hungry and whiny, and the only solution is to pour a glass of wine and grit your teeth.

6-7 pm – Bath and TV time. Depending on how tired James is (i.e. how many hours he has actually been awake), he may be exhibiting some of the following behaviors:

1) Giggling maniacally about something which we are clearly too old, boring or unintelligent to understand. A shame, because it’s clearly HILARIOUS and God knows I could use a laugh right now.

2) Charging around the house with the toaster.

3) Smacking me in the face.

6.45 pm – James has his “sleepy fruit.” Luckily he accepts this without question as it tastes yummy and it’s part of the routine.

7 pm – Baby Sam goes to bed. One down, one to go…

7.30 pm – By now James might be sitting still if things are going well. At this point we switch on “baby TV.” This usually has the desired effect of sending James into a trance and eventually knocking him out. If you have SKY, stick it on sometime and you’ll understand why. It is spectacularly awful and makes me want to gnaw off my own arm, but it works better than a general anesthetic.

8 pm – Once we are sure James is completely asleep, we take him up to bed and enjoy what’s left of the evening. It’s about an hour, usually, before we are ready to pass out ourselves.

Somewhere between 12 and 2 am – A banging noise indicates James is awake and stumbling out of his bedroom. He gets into bed with us and immediately demands a drink. On a good night, he won’t have truly woken up and will settle back to sleep, for a while at least. (When I say settle, I actually mean fidget uncontrollably and kick the other inhabitants of the bed repeatedly whilst simultaneously knocking off the bed covers). If not, the rest of the night is spent taking turns serving him with endless drinks, snacks and preferred televisual viewing in order to prevent a noisy meltdown, and regularly retrieving him from the window ledge, where he has managed to open a window and shout WAKE UP!!! at the top of his voice to our poor sleeping neighbors.

3-4.30 am – Assuming he hasn’t woken beforehand, this is James’ usual getting up time. You do anything — anything — to prolong precious shut-eye. The TV goes on on a low volume. Teletubbies or Mr. Tumble are wafting into my dreams. Ahh, f*** off!

5 am – We hear the telltale sound of a table dragging across the floor. James is downstairs and is attempting to climb up to undo the bolt on the kitchen door so he can turn on the washing machine. Ok, time to get up…. again, assuming we are lucky enough to have stayed in bed that long.

And so, another day begins.

**********

About Holly Gaunt

I am 31 and a stay at home mother of two boys aged 3 and 5, the eldest of whom, James, is Autistic. I am married to Matt and we live in Somerset. In case I didn’t have enough on my plate we also have a massive hairy dog called Max who enjoys stealing my food, and also eating nappies. In order to stay sane, I exercise, drink wine, and write blogs. Follow me here, here, and here.