Note: I’m writing this blog post at 4:30 am. Being awake this time of night is not unusual (unfortunately). One of the common issues faced by parents of kids with autism is sleep deprivation. For some reason, sleepless nights often seem to come with raising a child with Autism. And parents everywhere search for answers. Sounds odd and funny I know, but it’s true. Simply Google “Autism Sleep” and you’ll be flooded with articles and forums full of parents asking for and dispensing advice regarding this groggy issue.

Friends and family know this has been an issue for us with Stone for years as well. It has not been uncommon for Stone to wake up at various times throughout the night – ranging from 11:30 pm to 4:30 am – and simply be awake for the rest of the night (and morning). And it’s the staying awake part that makes the sleep deprivation so challenging and different from other aspects of child raising. Every parent has to deal with kids waking up at different times during the night, but usually it’s tied to something concrete or easily identifiable – such as an illness.

One of my laments (besides simply being exhausted often) is that its hard for me to be productive – even when I’m awake with Stone in the middle of the night. This is different from when he and Ty were babies and infants. At least then when I was awake, I didn’t have to worry about where Stone was going and/or if he was potentially waking up another member of the household. At various times I’ve had to chase down and retrieve Stone from waking up Ty (he likes to go into his room and climb into the bed with him sometimes) and also, of course, Renee.

I wish I could simply lie down and cat nap on the couch and have Stone watch TV or get immersed in some other activity – but it doesn’t work that way. On New Year’s Eve Stone woke up about 15 minutes after I went to bed – and was up all night. I noticed that our cable modem was down and ducked into the office quickly to reset it. I heard Stone scamper upstairs and quickly chased him to our play room – where our friends were sleeping. I was too late though – Stone had already flung open the door and was heading towards the indoor swing. I apologized to our friends, grabbed Stone and carried him back downstairs.

As I mentioned earlier, it would be a lot easier if I felt like I could be productive for all of these hours I’m awake with Stone. But it’s simply a lot of work being awake with him. He’s either asking for a different show on TV, asking for snacks, trying to play with loud toys, or getting into some other type of mischief. It’s very different than the few times I’ve been up with Ty. With Ty, we have been able to hang out on the couch while he watches one of his favorite movies and I’m able to bang away on my laptop. My time with Stone is usually spent multi tasking between email, twitter, RSS feeds and watching (or listening to) Mike & Mike in the Morning on ESPN radio.

Fortunately, tonight is obviously an exception, as I’ve been able to cobble together enough time to write this post. With no guests in the house we’re able to hunker down in the play room, where Stone has been busy playing on the indoor swing.

I was hoping that cutting down Stone’s TV time (and famously booting out the Little Einsteins tv show) would help Stone sleep through the night more frequently. And generally I think it has helped to a point. Again, that is one element that makes this situation challenging: it’s just so damn unpredictable. Renee and I have gotten very good at building and sticking to bedtime routines with him and every night provide him with melatonin in the hope it’ll help him sleep consistently. And while we have had fewer nights where Stone has woken up (and stayed up), there are still many where he does.

Invariably the question comes up: why does he wake up and stay up? And the answer is: nobody really knows. There have been nights when we have been able to directly trace it to something he ate earlier in the day and we know he has an upset stomach. We have learned time and again that feeding Stone cheese (and any type of casein products) will lead to problems later. A few other times we can trace it to a major change in routine (such as the start of school). And for awhile, we were convinced that he was experiencing either growing pains or discomfort in his mouth/teeth due to his deep cavities. Of course, we have no way of finding out 100% what the issue is at any given time because Stone can’t tell us.

So the rest of the day will be like so many the past few years – filled with lots of coffee and me pushing myself to be as alert and productive as possible.

The good news is that these nights usually don’t happen back to back so tonight should be safe. Time to hit the coffee pot!

2 Responses

  1. I know all too well the sleep deprivation thing. In our case, Bugaboo has a pretty wicked sleep disorder, which causes dozens of myoclonic jerks per hour (and then he has seizures). Which, after a sleep study revealed, causes him to wake frequently. So frequently, in fact, he never gets past stage 2 sleep. Ever.

    He has been taking a sleep medication for two years now. We’re mostly successful. Now he’ll sleep 6-8 hours on a good night. Two nights ago he was up all night eating and then last night he sleep twelve hours, and perhaps would have kept sleeping if the school bus wasn’t en route. 😉

    Hang in there. I know how tough this is.

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