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Sunday, May 29, 2011


In the preceding week my husband and I moved into our new home extension. This has meant setting up a baby monitor in Harri's room so we can hear if he stirs during the night. Having an ear in his bedroom, so to speak, has been a real insight into his sleep patterns, and lack thereof. Not a night goes by that he does not wake. Sometimes briefly but often for an extended time of an hour or two. Occassionally he is happy to babble away and eventually drift off again, but more often he will cry out. He is ready to get up, even at 2am. Once upon a time we would pick him up to calm him, or give him a drink (water not whiskey). We have learnt that doing this only creates an expectation that he is getting up which leads to much distress when he is placed back into his cot. This means listening to his heartbreaking cries until he eventually wears himself out. Due to his strong need for rituals picking him up or engaging with him only creates expectations the same will occur the following nights. So we go through this Cry it Out process every few weeks.

When I mentioned this insomnia previously to his therapist she stated that in her experience it was often the actions of parents that led to sleep disturbances in our kids. I stared at her blankly as I knew his constantly disrupted sleep was nothing we were causing. I also know there are many ASD children being prescribed Melatonin to help with sleep issues so it is clearly a recognised phenomenen. Anyway I didnt respond at the time as I had no come back, and agreed that perhaps once he no longer shared a room with his sister his sleep habits would improve. I had been hoping if we could completely black out his room there would be no light creating visual stimulation for him. Well after a week this has not proved to be the case. The poor little guy is clearly one of those children for whom sleep issues are part and parcel of his Autism package.

Lying there at night listening to him toss and turn and mumble and cry breaks my heart. It also leads to my own sleeplessness as I worry about how this lack of rest may be affecting his ability to learn during his sessions. I also worry about how we will ever transition him from cot to bed. Once he no longer has the high bars to prevent his ability to crawl out of bed and entertain himself I can only foresee this issue escalating.

Since his birth sleep deprivation has become a way of life for me, and to be honest for the most part my body has adjusted and I cope OK. But it seems to me to be a cruel fate that a child as young as two must deal with the pain of insomniac episodes. I know myself what it's like to be awake for hours at a time unable to switch the brain off. I imagine this must be similar to what he is experiencing, and I wish I had a solution for him. Perhaps in time we will need to consider Melatonin too.


  1. we use melatonin here and it has done great things for the getting TO sleep. from 3-4 hours down to take it and one hour later be drowsy and ready for sleep. No side effects. Would reccomend it. I do wonder tho that it is not solving the problem per se and once he stops taking it are we back to square one? Will he have to take it forever? Have heard of some parents who say have stopped and child seems to still sleep fine and others who say have had to take more and more of it - perhaps though a mls per weight thing as their children get older rather than a tolerance thing?? I dont know. I will say tho that just as the paed explained the Melatonin doesnt help with night waking more with the drowsiness to go to sleep. We are trialling Vallergan Forte for getting thru the night. Without out our little guy would be up literally wide awake and literally bouncing off walls from 1-5am and then cranky (as was I) all the next day. Never thought would medicate but it is so vital to be energetic and patient when a parent even more so when parenting a child with ASD. He still wakes most nights but once and briefly and can be resettled. he is calmer and happier during the day and his speech and other devt has jumped ahead since sleeping better and I do not think this is a coincidence I attribute it to better quality and amount of sleep AND having parents who are calmer/more patient/available also. Anyway just my two cents worth on this topic, Michele

  2. I think I'd be staring blankly back at her too! Poor thing. can you give it another week or two to see if things settle down? I know after a big change for my son it will take him about a month (yes a month!) to get him sorted out. Sigh.

  3. Thanks Michele for your comment, I agree that sleep is essential for everyone to operate at their best. Sounds like you know all about sleep deprivation too.

    Lizbeth I intend to wait for another month or so to see how things go. I feel like we are a long way off needing medication at this stage. Perhpas because we have adjusted to this sleep chaos as normal. It snice to know theres a side effect free option there down the track, but for now we will continue on.
    I think your comment raises a good point about how determining is something works or not for our kids can be tricky due to how they respond to transitions.

  4. I probably would have just stared at the therapist as well. I've had therapists chalk all the sleep stuff up to ASD... I don't know that it IS... I envy parents who know exactly why their kids wake at night.

    I've found that my daughter is an incredibly finely tuned sleeper. Since infancy she's been an early riser. But what has a rather large cyclic effect on her is if she doesn't get enough sleep during her day. And by that I mean napping. She can go a day or two without one... by day 3, she's a hot mess. By day 4 or 5 she may start to rise early. (4:30 am instead of 5:30 or 6). THAT'S when we find that any visual stimulus or temperature difference in her room is a real problem. Her allergies play a very real role as well. (so do mine)

    Every 2 or 3 weeks we'll get a day or 2 of waking in the middle of the night. Like you, unless she's in obvious discomfort, there's very little we can do about it. Then nothing. We haven't used melatonin yet because she gets to sleep ok. And it's certainly not a predictable cycle.

  5. Melissa, the day sleep thing is essential for Harri. He sounds similar to your daughter. He has about 1-2 hours a day at midday. It's my breathing space and I never want him to stop :)

  6. Sorry you're having this to deal with. Been there. Our ASD oldest really didn't start sleeping regularly through the night until we had our second child when he was almost three. (Looking back, I wonder why on earth we'd want a second child at that point - the sleep deprivation might have affected our judgment. :))

    My guy wouldn't just wake in the middle of the night - he'd often be in a screaming panic, and at the least he'd usually be distressed. I remember our lives revolving around soothing routines and keeping as quiet as possible so as not to wake him, not that that fixed things. My husband and I learned how to sleep ourselves with one arm around him so we'd wake if he moved while he was up with whatever he found calming. Things got more interesting when he got old enough to start leaping head first out of the crib. I was so worried he'd hurt himself that we bought something from a safety catalog called a crib tent (I paid extra to have it shipped faster) that kept him inside and our cats out - I ended up using it for all three boys just for my own peace of mind. It held up very well.

    For what it's worth, I don't remember exactly when things shifted, but things did improve while he was still little, and at 15 my boy generally sleeps like a log. I wish you well in your own situation.

  7. Thanks Diane for your kind thoughts. I am continually surprised Harri hasnt tried to climb out of his cot yet. I suppose it's only a matter of time before we hear a thump in the night that signals the start of that new phase :)