So, I determinedly set about trying to be aware of how (and most importantly when) bedtime was going, and when T went to sleep… lets just say it did nothing for my stress levels to have to think about it all, find moments to write it down as I went and worry about how it would all look on paper to someone else who has never parented children on the autism spectrum, or even, it feels, has read much about it!
Yes, I’m at the start of another ‘course’ – a sleep programme, to ‘iron out’ my parenting errors and idiosyncrasies and discover whether T has a problem sleeping or I have a problem getting her to bed!! I have to say, these courses (all ‘voluntary’ but without doing them you can’t get further support) bring a whole load of heartache with them. Not only do they mean altering routines that have built gradually around the way family life seems to have to happen – and lets face it, altering any small thing has a huge and exhausting impact on all of us in the family – but they force me to look closely and analyse how things work (or more often don’t work!) and inevitably leave me feeling more aware of how badly I’m doing at the exact same time as feeling frustrated and angry that no-one ‘gets it’ – not that it surprises me, unless you share a similar norm in your family it must be very hard to compute when you’re told for example it can take an hour or so (on a good day) for me to get T through bath-time… the reaction was disbelief followed by caring sound advice – well if its stressful why not move bath-time away from the bedtime routine, you could do that in the morning before school (???!!!! what???!!! not enough time or energy in that moment to even begin to unpack with her how that probably wouldn’t be helpful for us as a family!)
The bottom line is though, that however frustrating or painful this process is, we do need to try to support this household’s sleep patterns more so I need to try! I know enough about the long term ill effects of sleep deprivation to know that its better if you can avoid it, but so far in my experience of parenting that has not been an option.
“The percentage of the population who need less than five hours of sleep per night, rounded to a whole number,” says Roth, “is zero.” (Thomas Roth of the Henry Ford Sleep Disorders Center in Detroit)
All three have been a bit tricky with sleep. B didn’t sleep through, with maybe 2 or 3 exceptions, till she was 4, and also struggled to have daytime naps as a small child. A did sleep well in comparison, and certainly got to sleep much more independently, though did have night-(terrors) laughter (no joke, honestly, very disturbing at the time) and has since had long periods off and on where he has woken in the night with nightmares. Both B & A have been known to sleep walk, and sleep talk – which still happens, B has even climbed out of her high-bed and down the ladder still asleep fairly recently. Then of course we added T into the mix… a very amiable, fitting in kind of baby (looking back, all was well as long as I was holding and feeding her – I would get through the older two’s bedtimes just continually feeding long into the night!) who is growing up so fast, cheerful, friendly, lively, and really loves falling asleep ‘on me’ at bedtime just as she did as a baby, and who still wakes 2 or 3 times most nights and needs me to be there to get back to sleep. We have also had the added complication of the dynamics between the three of them at bedtime and through the night of course… it is very difficult to persuade B who has understood that when a baby cries it needs Mummy, that it is ok to ‘train’ a baby to get to sleep by itself in a cot, leaving it crying for a very short time – the stress fall out was more than we could handle (and pragmatically really unhelpful in the night – esp considering B can’t easily get back to sleep without me there either and its clear that anxiety does not make for an easy context for sleeping.) so T very rarely got ‘left to cry’ even for more than a few minutes. It all, put simply, adds up to chronic sleep deprivation… and the kind of bedtime routine that is going to raise a few eyebrows on this course!
There are some places to look for hints and tips particular to sleep difficulties connected with ASD – though sometimes these still have some frustrating throw away lines in them:
- http://www.autism.org.uk/living-with-autism/understanding-behaviour/helping-your-child-sleep.aspx The quotes from Donna Williams’ book, Somebody, somewhere, in this article are very helpful in seeing that not everyone’s feelings and experiences of sleep are what you would expect.
- https://www.autismspeaks.org/family-services/health-and-wellness/sleep Has a printable ‘tool kit’.
I am finding people though, who are reassuring me I am not in this alone!!! That is making a world of difference, and over the years so have those friends and family who have listened, believed how it is and have still come alongside. It’s been invaluable to us, we wouldn’t be here, or as sane as we are, without them! And in it all I try (and then try again and keep on trying again) to lean on Father God who I trust to understand, and to bring me all that I need for what is ahead of me each day and importantly each night. After all he led Elijah to a safe place where he could sleep, and then eat, then sleep some more… and only then did He talk with him about what had got him into such a state (1 Kings 19, written beautifully in The Message). Love this verse we’ve been learning with our church pre-school group:
God can bless you with everything you need, and you will always have more than enough to do all kinds of good things for others. (2 Cor 9:8 CEV)
Oh I remember this! On the first night of my sleep training programme I put the four year old to bed, then started training the two year old Aspie child how to settle now he could escape from the cot. I was advised to keep a diary for two weeks to prove to myself that I was actually making some progress. I was heavily pregnant at the time and I carried him back up those stairs no less than 42 times! I think the most success I had was one particularly restless night of him wriggling around in our bed and I said “go and and get in with your brother”. The co-slept for years and we even got rid of the second bed for a while as they had bounced on it and broken it. He still sleeps very badly but at least nowadays he does not wake me to solve the problem.
Well done Cathy you are so talented at writing. Keep doing this!
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Oh thank you for the encouragement Alison, means a lot 🙂
B reminded us over tea tonight that we had made her a spare bed at the end of our room to move her out of our bed, & how it began as an air bed, then sleeping bag on duvets on the floor, then just on a blanket on the floor, then pillow removed – we were ready with the hairbrush as a final push but true to form out of the blue B commented ‘mum you know I have a very comfortable bed in my room, I’ll use that now please!’ – and that was that, no more climbing in our bed!!! Made me smile to remember, funny to hear her side too, she had no idea till tonight it was all a cunning plan, she will probably never trust me again 😉
I remember sleeping at the bottom of my parents bed as a child and my son did the same when he was small. It is so very tiring at the time. I will pray for you as you go through this difficult time xx
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thank you Dancing Queen 🙂
Lots of useful links – but then there are so many children on the spectrum who find sleep so difficult. It must be connected to their neurology – am only guessing at that, though.
I do hope this latest attempt to help you all find a better sleep routine will work. I’ve been rather lucky in that department over the years as my kids haven’t shared a lot of the problems other spectrum kids have with sleep but we’ve still had those periods of night terrors, anxiety, nightmares, insomnia and early waking. Living on so little sleep makes everything else so hard as well. I really, really hope you can find a lasting solution x
Hi Kirsty, thanks for visiting. Latest is that we made no progress with the suggestions but have since been prescribed melatonin which is giving me hope for bedtimes! So glad you don’t have problems with sleep all the time. You’re right lack of sleep makes everything so much harder!
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