Monday, 23 November 2020

38 helpful sleep solutions for children with Autism

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Discovering a way to get your child to sleep well can feel like chasing the Holy Grail for some parents, especially those who are living with Autism in the house. This post offering sleep solutions is not intended to look at the well-known issue with baby sleep routines but rather the ongoing challenges which occur in homes around the country, for toddlers and beyond. Autistic children, particularly those with the type known as Pathological Demand Avoidance, children with ADHD, children with a myriad of other conditions and even children without additional needs may all struggle with sleep at some point in their lives.
middle aged woman lying in a bed covered by duvet and fidgetbum zipped sheet, pretending to sleep
Much as I'd love to be offering a magic wand for all the sleep-deprived parents out there, I'm going to start with this disclaimer: our youngest daughter is 13 and we haven't cracked it yet. One thing I'm not though, is a quitter - I've been writing this blog for nearly 11 years which I think is fair proof of that. Even though we have tried most of the suggestions below in our house over the years, I have learnt that it is ALWAYS worth going back over them. Just because one solution hasn't worked before doesn't mean it won't work in the future. And it might have worked in the past, then stopped working, but it could work again. When you're desperate, you will try anything, right?!

There are so many suggestions that it was difficult to know how best to present this post. In the end I've decided that a discussion around experiences we've had with some of the 'sleep encouraging' ideas would be the place to start, but that a clear list of all the solutions at the bottom could be helpful for many. So if you're a TL:DR kind of person, feel free to skip to the bottom of the post!

The current sleeping arrangement in our house is that I sleep in a single bed in our younger daughter's bedroom. This hasn't always been the case, but for the past 8 months or so that's where I am to be found every night. It's necessary right now but I'm obviously hoping it won't have to be for much longer. I think there's an unspoken expectation from society that parents must sleep in their own beds, in their own room. Over the years I've spoken with so many parents who have a variety of sleeping arrangements with their children though, and my first bit of advice is to do whatever works for you and your family.

For many years before this period, our autistic girl was mostly able to sleep alone in her own room. I know that on the whole, we've been lucky with sleep. We haven't had as many broken nights as many other families have to endure; once asleep, our girl generally stays asleep and nightmares have thankfully been few and far between.

The main challenge for us has always been around the getting to sleep. Dropping off. Busy, active minds find it extremely difficult to switch off. Too many anxious thoughts about 'what if?' come to the fore when there's no other activity taking place. Some families struggle with children who don't want to go to bed or to sleep because they are having too much fun being awake, but that's never been the case for our youngest. She has always been a late sleeper and early riser, but she's always known when it was time to go to bed and at that point she wants to sleep. She just can't.

We've been through long and painful periods of me kneeling on the floor or sitting on the bed, holding her hand to help her feel safe. We've been through the times when I've tried leaving the room and returning to check on her, sometimes repeatedly, because she's just not able to drop off. 

Trying to pinpoint 'why' sleep is not happening is a good place to start - too hot, too cold, too uncomfortable, scared of little sounds, scared of the dark? Or is it thoughts of something which has happened at some point in the past, or fear of what is due to happen at some point in the future? Or the fear of not knowing what might happen? If you can solve any of these riddles you may be one step closer to that Holy Grail...

38 Sleep Solutions:


1. Night lights - our girls have both always had a night light on permanently throughout the night. It could be a simple night light which plugs into a socket like this: 
Or a cute animal lamp like this kitten which we’ve bought previously: 
The kitten (or other animal) could double up as a ‘friend’ to watch over your child. When our girl was really young we bought her a jelly lamp which she loves and has used ever since - it cycles through several colours. Did you know that red is the best colour for night time?!

2. Daylight alarm clock - there are several Lumie bodyclocks which have a sunset function which lowers light levels slowly to aid drifting off to sleep. Some models also wake you naturally with a gradual sunrise.

3. Blackout blinds - it may sound obvious but these can be especially helpful in summer time when the evenings are lighter for longer.

4. Eye masks - Not to be confused with this year’s newest fashion accessory, the face mask… these ones are for eyes only! Our girl has used a fluffy cat eye mask with a soft backing for a few years now. It always surprised me that she found this a good solution because she gets so hot generally and I’d have thought the mask would increase heat, but it seems to work for her, as part of a bigger routine. There are many options for eye masks but here’s a panda version (because PanDAs are the mascot for the PDA Society).

SOUNDS


There might be a general pattern of thought which says that only silence will work to induce sleep but for some it’s the opposite. Calm sounds can help soothe anxiety and ensure that the brain stops racing.

5. Sounds such as the sea, rain or a rainstorm, or a rainforest. A while back our daughter chose a YouTube video of some soothing piano music. We left that running by the side of her bed and switched off once she was asleep.

6. White noise - leaving a fan on can help (we use one with an inbuilt timer so it’s not running all night), or try one of the many apps which specifically play white noise.

7. TV  - suggested by one of my Facebook page readers: ‘the TV  is actually just out of sight so she’s not necessarily watching it but she plays episodes on Netflix that she’s watched hundreds of times and she knows it will play the next episode automatically.... I also think she likes the light from it and the noise as it cuts out any night time noises. It’s reliable and routine and it seems to help her’

8. Screens - might not fit into everyone's ideas of what is acceptable, but for some this might work. I’m not saying it’s the best solution, but as some will know from my previous post ‘Autism, Gaming and Screen Time’, I don’t tend to pay much attention to general pressure to limit or take away screen time. There have been times when our youngest has wanted to carry on watching YouTube videos until she fell asleep; I’m glad it’s not become a habit for her though and I appreciate that wouldn’t be the case for every child. I think using the iPad to drop off tied in with times when her brain was working even faster than before, and as with the TV suggestion above, old YouTube videos were well known and therefore comforting.

9. Apps -  'Calm' app and 'Stop think breathe for kids' app are just a couple which have been recommended to me but there are hundreds out there.

10. Stories are a good way of winding down for many - they are certainly guaranteed to make me drop off! Audio options tend to work well, whether that’s CDs or Kindles set to play through speakers, or good old fashioned reading aloud.

11. A speech ritual - talking your child through where you will be if they need you, or the fact the main doors and windows are locked, can be comforting and more so if the same words are used every night. Or maybe your child needs to say the same thing out loud in the same way every night - regardless of whether it makes any sense. Just go with it would be my advice!


SMELLS


12. Lavender - pillow spray is probably the most commonly used bedtime product and is easy to use. We had some success with the Sleep Better pulse point rollerball:
Tisserand bottle of Sleep Better pulse point gel

13. Lush Sleepy lotion - lots of people suggest this has fantastic results, especially when used on the base of feet.

14. Oil diffuser - better for older children who might not be tempted to play with it, or else have it high up out of the way.

15. Clothing or toys which smell of mum/dad/carer


TOUCH


16. Weighted blankets - we weren’t sure about this for our daughter as she tends to get so hot in bed, but we reviewed a Snoozzy weighted blanket and it worked well over winter time last year.
our youngest daughter lying in bed with her weighted blanket over her
17. Sleeping bag - sometimes not getting all tangled up in a sheet or duvet can be the answer. There’s no rule saying sleeping bags are for camping only - a cocoon type bag might keep your young person’s legs ‘together’.

18. Fidgetbum - we were sent one of these to review recently. Sasha chose not to try it out (yet) but her Dad loved the feeling of being tucked in and gently ‘compressed’...
middle aged man lying in bed with fidgetbum compression sheet over the top
19. Mattress and topper - just like adults, some children prefer them harder, some softer. Worth seeing if a new one of either helps. Toppers tend to be cheaper than a new mattress, so maybe start there! We reviewed a Simba mattress three years ago and our girl still finds hers comfortable. 
our youngest daughter lying on a Simba mattress with her eyes closed
20. Pillow - even as adults we all have different preferences with pillows too. Hard, soft or full body length to cuddle or rest legs on. Memory foam may suit some. 

21. Teddy fleece or brushed cotton sheets, duvet covers and pillow cases for softness. Our girl actually prefers 100% polyester because it’s soft and shiny and that’s the fabric feel she prefers. We’ve found it difficult to find in decent, non-kids branded designs though!

22. Massage - feet, back or head. With or without oil, with or without smells.

23. Bath before bed - warm water helps the body temperature to drop. Soothing, relaxing bath oils can be added.

24. Teddies - sensory issues are particularly common among those with autism and ADHD, particularly proprioception - one OT explained that an empty bed "can be scary if you don't know where your body is". Lots of teddies or extra pillows in bed may help.


BODY REGULATION


Quick disclaimer for this section - it’s always worth checking with a GP or pharmacist when considering products for the skin or body. These are not my personal recommendations, just solutions which other people have tried and found helpful.

25. Melatonin - this is not authorised for sale over the counter in the UK and several other countries, but is in the US. Melatonin is a hormone that occurs naturally in your body and helps control your sleep patterns. Man-made versions can be used to help you fall asleep quicker and stay asleep during the night but there are side-effects and it is not suitable for everyone. It is available on prescription in the UK and can be given in tablet or liquid form, or can be found in gummies too. Please consult with your GP or paediatrician for more information.

26. CBD oil - CBD products are now apparently legal in the UK, as long as they contain less than 0.2% THC content and are sold as a health/food supplement. They are still being tested though and I'd urge caution and definitely avoid mixing with any other medication.

27. Cherry juice - there are reports of cherry juice helping but research seems inconclusive. Cherries are alleged to have relatively high concentrations of melatonin. If it is something your child likes anyway, it could be worth a try as long as it’s in moderation.

28. Magnesium - oil/spray/lotion/or supplements. A lack of magnesium can contribute to restlessness and sleep difficulties. We tried a spray but be warned they do have a slight ‘tingly’ feeling which might feel uncomfortable to some. 
Epsom salts in the bath is another way to aid magnesium intake. Please bear in mind this is not advised for people with heart problems, high blood pressure or diabetes.


HEAT ISSUES


For those who are hot in bed, lowering body temperature is proven to help aid sleep. There are several options for achieving this:

29. Fans - as mentioned above, we use ours with a sleep timer as our girl has fears about electrical items being left on overnight. A tower fan which sits on the floor and is further from the bed works well for us.

30. Air Conditioning Unit - not a cheap option but as our summers appear to be getting ever hotter, this could be a good investment.

31. Cooling pads or chillows (the pillow version) - these are often sold as cooling mats for dogs but can work well in adult beds too! They are mats to lie on (various sizes available), which can be popped into the fridge for a while before bedtime to make them extra cool.

32. Cooling lotions - mint foot oil or cream is cooling, as is aloe vera gel or Deep Freeze roll on gels which can be kept in the fridge. 

33. Rice bags - homemade bags sewn and filled half full with rice, then stored in the freezer so they are heavy and cold.

34. Frozen water bottles which can be rolled gently on the skin over a thin layer of fabric.

35. Frozen sheets - some people go as far as bed sheets put in the freezer before using (in a sealed bag) but I have to admit I’ve not found the time to try this yet!

36. Fan time - lying in an empty duvet cover and filling it with cold air from a fan could be a bedtime activity to help cool down.

37. Go outdoors - a quick burst in the garden for some cool air could help lower temperature and expend energy.

38. Stay low - sleeping in a downstairs room for a while might help (hot air rises!)


Phew. As I said right back at the beginning, there are lots of sleep solutions given here and most certainly more which I haven't yet thought of. We've cycled through most of these over the years but I'll still find it helpful to keep this list to refer back to.

As we know, all of our children are unique individuals. That means that it might take two, six or even all of these options at any one time to help our children drift off. And what works one month may not last forever. So be prepared - when you are sleep deprived it’s much harder to think of these solutions!

Finally, one last suggestion for you, although I'm only whispering this one because it's a book to read. And I know that parents of children with additional needs already tend to have large bedside towers of books. I wouldn't suggest it if it wasn't good though. My neighbour lent me this, and it took me a while to get around to reading it, but I'm so glad I started it. It's fascinating, and definitely worth reading if you are considering (or already using) Melatonin. Enjoy!








To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

Books about the Pathological Demand Avoidance (PDA) profile of autism


What is PDA (Pathological Demand Avoidance)?


Ten things you need to know about Pathological Demand Avoidance


Does my child have Pathological Demand Avoidance?


The difference between PDA and ODD


Strategies for PDA (Pathological Demand Avoidance)


Pathological Demand Avoidance: Strategies for Schools


Challenging Behaviour and PDA


Is Pathological Demand Avoidance real?


Autism with demand avoidance or Pathological Demand Avoidance?



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4 comments:

  1. Really useful post Steph, thank you. Love the pics, especially you in bed with ET :)

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    Replies
    1. Haha ET is a well-loved Turtle, been with us for over 13 years! ;)

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  2. Fabulous tips...we have the same cat lights :) and I think we've tried most of these over the years...I've a 32 yr old that doesn't sleep still...but at least he doesn't need his Mum anymore..well, maybe sometimes (sorry, you probably don't want to hear that)

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    Replies
    1. Ha thanks, I would say I'll look forward to that stage but zzzzzz..!

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