I am truly honoured that the lovely Sensational Learning With Penguin has written this wonderfully helpful post for our blog about her family’s experience with sleep. Have a look at her blog and follow her on Facebook and Twitter.
Worrying about sleep deprivation
When I was pregnant with my son (our first and only child), one of the things that worried me most about becoming a parent was how I’d cope with the lack of sleep. I was aware that my preferred 8-9 hours were under threat from the new arrival, as were the weekend lie-ins and my habit of nodding off in front of the telly.
Looking back, I can feel that my worrying about losing a few hours of sleep was a bit immature. Naive and childish, even. As it turns out, ten years down the line, I can say that having a child has brought me far greater worries than a lack of sleep. Worries so big, that if I’d known about them in advance, I might never have dared to have a child at all. Thankfully, I was ignorant! And still, it could be said that I was right, as sleep (or rather the lack of it) has been a massive issue for our son for most of his childhood. And despite significant improvements, I’ll have to admit it’s still a work in progress. Over the years we’ve tried a variety of things to help our child go to sleep and stay asleep, some of which have worked quite well and others not so. In this post I’ll be sharing some of our experiences so far, and hopefully there will be some ideas here that can be of help to you, if your child also struggles with sleep.
Off to a good start, but then…
Before going through some of the strategies we’ve tried, I’d just like to add that initially, as a baby, our son slept well. But as he reached toddlerhood, and our friends children who were of the same age started sleeping through the night and falling asleep in the early evenings, it became obvious that our kid was not following a similar pattern. His worst years were around age 3-5, when he’d stay awake until around 2 am most nights, then often wake up again after a couple of hours and stay awake for an hour or more. And most mornings we needed to get up for work etc at around 7 am. I know there a children who suffer worse, and that 4-5 hours is enough for some adults, but for me this was close to unbearable. So I started using those waking hours for searching the web, desperately hoping to find an answer to what would help our child to sleep. I should add that by this time he was getting diagnosed with autism, after regressing developmentally, and I was told that issues with sleep were common in combination with autism, but not offered any help at that point.
There are many possible causes for not being able to sleep, and some of them may be more frequent in people with autism. In our case there seems to be a combination of causes at play, hence requiring a combination of strategies.
Is it all in the gut?
One of the first things I turned my focus to was diet. As our son often showed signs of being in discomfort, and sometimes even pain, during those nightly hours, throwing himself back and forth in the bed, sometimes kicking and screaming, I thought gut issues could be the root of his problems. I read about how certain foods can give you reflux, gas or constipation, and I read parents’ stories about how certain diets had helped their children. I looked into elimination diets (in which you exclude certain food stuffs) like GAPS, gfdf, etc. But with a child who’s diet was already extremely limited due to his very selective eating, it seemed unrealistic and possibly dangerous to start cutting things out, especially as he was also struggling to gain weight. So I shifted my focus to reading about food that is GOOD for your gut, to see what I could possibly get our son to eat more of. This all led forward to a kind of eclectic dietary intervention, aiming to increase his intake of good stuff while decreasing some of the possibly bad things.
I’m not a dietician and cannot say what may or may not work for you or your child. The advice is always to contact a doctor before making any major dietary changes, and if they seem to have a negative effect, please stop. We saw a dietician who unfortunately was of very little help, and our doctor, who was lovely but not an expert on gut health. He did however tell us to try a prescription free product for making bowel movements more regular, and for that I’m very thankful as it certainly had a positive effect on our boy’s moods and appetite, and I believe that contributed to us being successful with our changes in diet.
Our son’s sleep did improve gradually with his seemingly improving gut health, and while I can’t know what will work for you, I’d encourage you to learn more about gut health and to take a look at what positive adjustments you might be able to make. Questions you could ask yourself are for example:
• Are there things that my child eats a lot of, which are likely to cause constipation, gas build-up, our a sour or otherwise irritated gut? If so, try to cut down on those, having them less often and/or in smaller amounts. In our case this applied to white bread, pasta and sugar. I also wanted to keep his gluten intake low, as I suspected that could be a source of irritation to his stomach, even though he’d been tested and found not to have a gluten allergy. So his favourite dish of pasta became a once or twice per week thing, rather than every other day, and it was replace by meals with rice (usually red or wholegrain) or potato wedges. And for breakfast, the bread was on most days replaced by gluten free waffles.
• Does my child eat a good amount of fruit and veg? For a while I had given up on getting our son to eat more healthily, I just wanted him to eat at all. This meant that he snacked quite a lot. I decided to only offer him fruit or veg for most snack times, but honestly didn’t think he’d be that keen. To my surprise, after some initial reluctance, he was very happy with this, and the amounts of fruit and veg that he consumed each day shot up. I’ll admit that it was a limited selection, mostly carrots, peppers and apples, but still a great improvement. Fruit and veg contain fibers and moisture which can help keep you regular, as well as being a good source of vitamins.
• Does my child eat and drink enough, and regularly? I realised my son often didn’t feel hunger or thirst. This is to do with something called interoception, which is part of our sensory system and concerns the body’s internal signals about pain, toilet needs, thirst, hunger etc.
• What are probiotics and prebiotics, and could I add any of those to my child’s diet? Very simply but, probiotics are good bacteria for the gut, and prebiotics are things that will generate good bacteria in the gut. We started taking probiotics in a tablet form. Some say other forms may be more effective, but again, I had to find something my son would accept to eat.
• What little things can I add to improve the food that we’re already eating? There are many seeds, herbs, spices and oils which can be helpful. Some have thoroughly documented benefits while others don’t, but my take has generally been that as long as there’s no risk of harm, I’m happy to add ingredients that are said to be beneficial. For us, this has meant that things like turmeric, oregano, spinach, rapeseed oil, coconut oil, chia seeds etc has been sneaked in to various meals. Basically, if it won’t ruin the food it goes in.
I mentioned earlier about the prescription free medication we’d been recommended, to ease problems with constipation etc. That wasn’t supposed to be taken forever, but every time we cut down to stop, symptoms reoccurred. However, when I used a few summer weeks to implement all the different things mentioned above to improve gut health, the medication could gradually be phased out. And, which is the main thing in this context, our son’s sleep did get better. He’d still fall asleep later than most kids, but he’d be happier about going to bed, and if he’d wake up during the night he’d rarely be kicking and crying like before.
As I mentioned earlier, we’ve used a combination of things to help our son’s sleep, and although food has been a big part of it, I believe there are other things which have been of equal importance. One major thing was getting a big trampoline, outdoors. In the beginning he’d just walk around on it, but once he learnt how to jump, he’d really go for it! And a nice, long trampolining session or two in the evening seemed to help him sleep at night. There are several reasons for why it should indeed help, and I believe the main one for us is the proprioceptive input, meaning the pushing and pulling of joints and muscles. An occupational therapist should be able to tell you more about how this works, but in short, the compression of joints and muscles generally has a relaxing, stabilising effect, which as I understand it has a lot to do with neurotransmitters that are released when we jump, run, push, pull etc.
Another great thing about trampolining outdoors in the evening is getting a good dose of fresh air, which is another thing that is often mentioned in advice about improving sleep.
If you haven’t got the option of having a trampoline outside your home, you can get similar benefits from a brisk walk, or other physical outdoors activity. And if you’re looking for more proprioceptive input, you can easily find loads of activity ideas online. One thing that isn’t mentioned very often is that chewing also provides good proprioceptive stimulation, especially if you choose something crunchy or chewy. For us, carrots and apples are a great choice, and although you should avoid too much eating close to bedtime, it’s generally good to have a light snack so that hunger doesn’t hinder the sleep.
Bathtime – now with added salt!
Another evening routine which we added to improve sleep is epsom salt baths. The main reason for this is to provide a good source of magnesium (which epsom salt is rich in). Lack of magnesium can cause anxiety, muscle spasms, irregular heart beat and cramps, none of which is great for when you’re trying to sleep, while an added dose of magnesium can be relaxing for both body and mind. Apparently it’s more easily absorbed through the skin than through the digestive system, so baths (or lotions etc with added magnesium) seems the better option.
You shouldn’t be using any other products in with the epsom salt, as that can hinder the magnesium from being properly absorbed, but something that you could try at other times is essential oils. We haven’t used them much at all, yet, and in fact our only attempt of using them for sleeping purposes was a failure. We’d been given a bottle of lavender oil (of good quality) by our son’s generous play-school teacher, who thought that a lovely lavender oil foot massage would almost certainly send him to sleep at night. But sadly, it seemed to have no effect what so ever on our boy. However, I do believe essential oils can be helpful if you get it right, and we may well try some again.
A different rhythm, and a somewhat different life
I’m happy to say that our son now usually sleeps 8-9 hours per night, and sometimes even more. He still has a few days here and there of poor sleep, but on average, he gets a reasonable amount of hours. He still falls asleep late though, most nights, so it would be more complicated for him to achieve enough sleep if he wasn’t home educated. Also, ironically, he’s unbelievably difficult to wake up if he’s not ready for it.
Problems with sleep are common in combination with autism, and for quite a few people it seems to be linked to having a poor circadian rhythm. This means that the body’s ‘internal clock’ is out of sync, and it might feel like you’re running on a 27 hour body clock, while it should be on a rhythm of 24 hours. Our son rarely seems to get sleepy when nighttime falls, and I suspect that issues with sleep may be something that will follow him through life.
So as I said earlier, this is still a work in progress. The jury is still out, in our case, as to whether a dark room is preferable to having a light on, and the same goes for screen time. The general advice is to keep the bedroom dark, and not allow screen time for the last couple of hours before bed. But if there’s one thing that having an autistic child has taught me, it’s that common parenting advice rarely applies to us. Our son’s neurology and perception is different, he experiences many things in this world differently to the ‘average’ person, and this means that many things regarding his living and learning may need to be done a bit differently. That doesn’t make him a bad child and it doesn’t make us bad parents. Just different.
Guest Post By Sensational Learning With Penguin