Once upon a time I had three children who went to bed at a sensible time and slept all night. There was a sweet spot of a couple of years when we had no babies needing night feeds and other than the occasional wake up because of a bad dream or a wet sheet the kids would generally be in bed by 7.30 and we’d not see them again until about 7 the next morning.

We have always been consistent with bedtimes and kept a simple routine. We did everything by the book, and when it works it’s easy to feel a bit smug. It’s straightforward and everyone is well rested and happy. Simples.

Until it’s not any more.

Alice and Matthew are still pretty straightforward – teeth, pjs, story, hug, love you lots see you in the morning. Job done. Katie’s sleep has gone completely to pot and so has her bedtime routine. We now do everything ‘wrong’ as far as promoting a good night’s sleep goes, but it’s the only way we can even get her to go to sleep and avoid a meltdown every night. Doing everything ‘right’ just doesn’t work with her anymore. At some point her anxiety and need to be in control took over and bedtime changed fairly drastically. There’s so much to unpick with it now I don’t even know where to start, and it’s that whole catch-22 where we’re tired and probably can’t see the wood from the trees now in terms of knowing how to make bedtime a better experience for Katie and for us.

Getting Katie in to bed in the first place takes ages. She has a whole list of things she has to check before she will even think about going to sleep. These include promising that we won’t be burgled, that she won’t be kidnapped, that we’re not going to leave, that there are no such things as witches and wizards and giants, checking that her window is shut, checking that there is nothing in her wardrobe etc. It’s a long list and it’s hard work to stop her constantly adding to it. If she misses something out or doesn’t hear the answer she will start again. She also double checks everything, for example she will want us to promise that she will still be alive in the morning and then she will want us to promise again on our life. Her curtains have to be shut in just the right way. She ties her hair up at night but if her ponytail isn’t sitting right she’ll have to do it again. And again.

She is scared of the dark (never used to be) and insists on sleeping with lights on. We got some red lighting which is supposed to be more calming but she won’t use it. She used to insist on having the hall light on but that disturbed everyone else so we got her some fairy lights that stay on in her room. But although she wants lights on because she’s scared of the dark, she’s also then scared of the shadows the lights make in her room and can spend ages asking what’s that shape, that dark bit never used to be there, I’m sure I saw something move etc. She is also scared of any noise if she doesn’t know what it is. She has a white noise machine that we put on for her at night so I guess that blocks out some sounds but not everything. Some noises we can explain, some we can’t. It doesn’t help that she often seems to need to process sounds visually as well, so if you tell her a noise is the cat jumping off a bed she’ll want to see the cat. For sounds I can’t hear or I don’t know what they are I just tell her I can’t explain every noise but she is safe and she doesn’t need to worry about them. I don’t really know if that’s a good enough answer but it’s all I’ve got! She needs constant reassurance.

As is the case with a lot of children, Katie seems to save any worries or issues she has had in the day to talk about at night. We have tried to pre-empt this a bit by asking if there is anything on her mind or anything she wants to talk about a couple of hours before bed, but this doesn’t really work. Bearing in mind we’ve also had it stressed to us how important it is for her to decompress and be left alone if she wants to after school, it’s pretty hard to find a sensible time to offer that conversation. 99% of the time she doesn’t want to talk and I’m not going to force her. Also I’ve found that on the rare occasion she does want to talk about an issue during the day, she will still want to go through it again at bedtime anyway so it doesn’t really help in terms of saving time or making bedtime easier.

Every now and again there’s a curve ball thrown in to the mix as well and on top of all the usual fears there will be something else very specific e.g. she saw a spider, or she’s scared of ghosts, or she doesn’t think she drank enough that day so she’s scared she’s going to die.

A recurring fear that doesn’t happen every night but does crop up fairly often is a fear of being sick. I’ve tried so many ways to help Katie through this one but I’m out of ideas.

  • Just talking to her and reasoning with her isn’t very effective. We talk about how she’s generally really healthy and not at all likely to be sick, that feeling sick doesn’t always mean it’s going to happen, and if she is sick we would stay with her and look after her. We end up going round and round in circles and I’m not sure how well Katie processes a load of verbal information.
  • I’ve also drawn her a flow chart with different outcomes e.g. I feel sick so I can try and make myself feel better by taking deep breaths / having a drink / thinking of something else etc. If I am sick Mummy and Daddy will hold my hair back / sleep on my floor / get me a bowl / give me hugs etc. If I’m scared I can remember it’s not likely to happen / it doesn’t last long / I will be OK etc. It didn’t really make any difference and she still keeps saying she’s scared.
  • We bought her a worry monster that she saw and asked for. The idea is that you write down the things you’re worried about and give them to the monster, either to get rid of them or to talk about at some point. But once she asked for it she never really used it. She told me she felt bad giving the things she was scared of to something else (and we’re told autistic people have no empathy. Katie has loads of it just not always in the situations you’d expect).
  • I try giving evidence. We’ve sat and worked out how many days Katie has been alive vs roughly how many times she has actually been sick and it works out as something like 0.1%
  • I’ve tried acknowledging the fear – it’s not nice to be worried about being sick and we know it’s a horrible feeling when it happens
  • And there’s just the suggestion of go to sleep because then you can’t feel sick!

Nothing really seems to reassure her or make much difference. There are loads of times when I feel like she’s calming down but then she’ll say ‘but I’m still scared’ and I could just cry. We tend to eventually just get to the point where she’s tired enough that she goes to sleep but the next time she’s worrying about being sick we’ll end up going through the whole process again.

I have friends who when their children were babies and toddlers used to sit in their bedrooms with them until they went to sleep, and I used to feel sorry for them because we’d never had to do that. We just said goodnight and went downstairs to spend the evening together…until Katie started freaking out if she was left on her own to go to sleep. One of us now sits in with her every night. She used to go to bed at about 8/8.30 but she’d take so long to get to sleep that most nights one of us would spend all evening in her room and me and John ended up never talking to each other apart from a brief conversation when he got home from work. Now she goes to bed at 10, which I partly feel is too late for a 9 year old but it’s given us our evenings back and she goes to sleep a lot quicker now. I guess because she’s more tired she’s more likely to get to sleep instead of worrying about everything. It’s still not ideal though and I do worry she’s not getting enough sleep, although to be fair I think I’m usually more tired than she is!

If Katie wakes up in the night it means she wakes us up too. She still won’t go to the toilet on her own if she needs a wee in the night. She will get us up and we’ll just stand half asleep in the bathroom doorway while she sorts herself out. There’s literally no point in either of us being there, except that it reassures Katie so I suppose that is the whole point. If she wakes up because she’s had a bad dream or she’s scared then we’re screwed and there’s no getting her back in her room. It just ends up in conversations that go nowhere while Katie isn’t comforted by anything and we’re not as patient as we could be at 2am or whatever time she’s woken us up.

As an example the other night she got up because she was scared someone was in the house. We reassured her there wasn’t anyone there because we lock the doors and shut the windows. “But I’m scared”. We told her to listen for any sounds because she would realise there weren’t any because no one was creeping around. “But I’m scared”. I asked her if she wanted to come downstairs with me so she could see for herself that there was no one there, but she was too scared to in case there was someone! So John went downstairs and then came back up to promise her there was no one there. “But there might be”. At which point there’s not much else we can do, it’s either a case of being up for who knows how long in the middle of the night trying to reassure her and getting nowhere, or offering her to sleep in our room because at least then she will actually go back to sleep.

I don’t know if all this is a result of anxiety, a need to be in control, some elements of OCD, something else? For us as a couple it’s unbelievably frustrating. It impacts our relationship, our mood, our ability to socialise. But I’m assuming it’s hardly a barrel of laughs for Katie either. I know some people think we’ve given in to her and we should never have let it get this complicated. We should have been firmer with her and not let her have her own way. Maybe that’s right, but it’s not like she’s sitting there laughing to herself that she’s got us under her thumb and she’s in control. There are many nights that she’s in tears, there are a handful of nights where she’s in full on meltdown mode, and even the nights that go ‘ok’ where we just have to answer all her questions and stay in her room but she doesn’t freak out about anything there is still that desperation on her part to have everything exactly right and to be in control of the situation, which must be mentally exhausting.

On a practical note I’m not really sure what being firmer with her would entail. She’s 9 years old. We can’t just tell her to go to sleep – if it was that easy we wouldn’t be in this situation in the first place. I would feel awful putting a time limit on her and saying something like she’s got 10 minutes to talk to us and then that’s it and she has to go to bed regardless. All that tells her is we’re only interested in listening to her when it suits us or that her worries only matter up to a certain point and then we can’t be bothered to help her anymore. We can’t just walk away from her and leave her to it. She will get out of bed and follow us! What are we meant to do, pin her to her bed? Lock her in her room and head to bed ourselves? Give her consequences for not going to bed? Be asleep in the next half an hour or we’ll cancel your friend coming over. What would any of that do other than give her the message that we don’t actually care why she’s scared or why bedtime is so hard for her, or that we don’t believe her and think she’s faking it all.

I don’t have the answer (clearly, as bedtime is so rubbish!) so I suppose for now I’m just hoping that the fact we’re answering her questions, we’re trying to help her feel safe, we’re doing what she needs / wants / demands (delete as appropriate) is enough and that she will come to realise she’s OK.

2 thoughts on “Sleep

  1. My 4yro boy is undergoing autism diagnosis at the moment & has speech, OT, dietician etc.

    His sleep was good for awhile but now its like a 10 step process to get him to sleep, always in same order,lots of reassurances and hugs n kisses, and awake before 5:30am…actually 5:30 is a sleep in tbh.

    Thanks for writing this! I know I’m not alone now in this…


    1. I hope the OT can offer you some suggestions for helping with sleep. We haven’t had much input from professionals and pretty much just make it up ourselves at home and hope for the best. You’re definitely not alone!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: