5YO hasn't slept in a month

[ItsClemFandangoCanYouHearMe]

Ok so not quite, she goes to bed at 7pm - 7.30pm every night. We have a story, cuddles, she's allowed to ask me 3 random questions of her choosing and then it's time to sleep. This has worked with no problems for 2 years.

Previously I would lay down next to her bed holding her hand and she would fall asleep, I would leave and I wouldn't see her again until anywhere between 5-7am the next day but the past month has broken both me and my husband.

She started waking up in the night so we would come down with her until she slept then go back to bed but it's not just once in a blue moon anymore. She has woken up EVERY SINGLE NIGHT FOR 29 NIGHTS except 2 nights in a row 2 weeks ago. We're talking up, screaming, stamping feet and running round the house 4-5 times a night. I can't cope!

She has ASD and has certainly regressed over lockdown but we have tried calm, night lights, lots of reassuring chats and we have had all the patience in the world but no more.

My husband and I take turns every night, one gets our DS2 to sleep and one our DD5 and we get up in turns throughout the night but it's sending me to a dark place.

I've been really unwell recently and I haven't been able to get any rest and I just don't know what to do anymore!

We've even tried 5htp gummies (safe for children) and we even brought the bed she uses at nannies house to her bedroom as her nan was getting rid of it. Nothing.

Any advice, anything at all would be greatly appreciated. I'm losing my mind. Thanks you 🙏

When she wakes up, just tell her, gently and firmly, that it's night time and time for everyone to sleep. Lead her back to bed, and leave. Do this as many times as it takes, and ignore the tantrums. It will take a few nights, but eventually she will get the message.

I'd suggest keeping her in her bedroom, in bed, at night. Including any night wake ups. Getting her up will not be helping.

If keeping her in bed (even when trantruming) isn't possible then the only other option is consider would be bringing her into your bed until she settles.

What happens if you sleep next to her or ona mattress next to her bed? Is it the reassurance she needs. It's not ideal but you might get a proper nights sleep if your in her room with her.

Me husband and I spoke this morning and said we're just going to lead her back to bed and leave firmly, but I know this won't work. Im willing to try anything at this stage!

Last night we allowed her to come down and fall asleep on the settee but it was worse than ever.

If we allow her into our bed she refuses to sleep and just constantly kicks us.

Other than that we always lead her back to bed but lay with her.

She's so high energy in the day that it amazes me that she doesn't just wear herself out!

@HPandTheNeverEndingBedtime

What happens if you sleep next to her or ona mattress next to her bed? Is it the reassurance she needs. It's not ideal but you might get a proper nights sleep if your in her room with her.

Funnily enough, that has been our thing. Temporarily when she moved out of a cot we took the cot mattress and put it down next to the bed for any wake ups and it just became the norm and that's what we did for the last 2.5years.

She needs the reassurance but just being there isn't enough anymore.

Sleep problems can be very common in children with ASD and I have also found DS2's sleep has been effected by lockdown.

With ds2 I think it is because he is not doing the variety of things during the day that he would normally do so is not tired in the same way. Whilst he is still doing exercise and school work it just isn't the same as the mental stimulation of doing those things out of the house/with others. He is also quite anxious during the night so We have set up a camp bed in our room for him so it does not disturb us as much. It isn't an answer but means we are all getting more sleep so can then tackle the problem. Trying to tackle sleep problems when you are sleep deprived is incredibly difficult. It is exceptionally difficult to calmly put a child back to bed multiple times during the night when you are exhausted.

You need to be patient about leading her back to bed. When you say it won't work, don't assume that it will work the first night, or the second, or the third. The thing is consistency. It will take time.

Absolutely no coming downstairs in the night, that's just totally confusing. Night time is for sleep, in bed, daytime is for downstairs in the living area.
I would personally go back to her room with her and lie with her until she fell back asleep.

I am sorry that you have been really ill recently. Do you think she is worried about that? Sometimes DC act up when they don't have the words to express their feelings properly. Maybe you could reassure her on that front?

In normal circs I would recommend a star chart with some easy to get much wanted rewards. That always worked for us (though with NT DC).

Ps, unless she's very tired by 7pm I'd try giving her a later bedtime.

I also have a 5 year old with ASD, and I can absolutely relate! I spent his early years on a mattress on his floor, holding his hand everytime he woke up to get him back to sleep. Then he came into our bed every night and we spent time either taking him back to his bed, repeatedly several times every night, or just accepting a bad nights sleep with a very wriggly toddler in bed with us. It's been very difficult at times but it comes in phases so we know that it's always temporary (until next time!).

Since lockdown he has started waking up at 2am, and starting his day then. He was going downstairs by himself to play with his toys, so we moved them upstairs and he is not allowed downstairs unless accompanied. He will get up at 2am, play with his Lego until 5am, when I will have had enough of his noisy play and sit in his bed with him and comfort him back to sleep. It's not ideal, but it will pass.

Set her some boundaries about what she can do when she's up - not coming downstairs or running about etc. Find out what she's feeling when she wakes - DS is scared of the dark and wants his toys to come to bed with him. We have a night light, a music box, a selection of Lego he is allowed to have in his bed, he has a cheap White wall clock which I bought from IKEA - took the front off and coloured sections - green means he can come to our room or downstairs, red means he stays in bed, orange means he can play but only in his room. We used a reward system to get him to stick to this and it took bloody ages, but my DH is incredibly stubborn and had the patience to see it through! It helps him as a visual cue for his behaviour.

Most importantly, decide with your DH what your doing - my DH was very much of the opinion we should be strict but I was the one doing all the night wakings and took a much softer approach to just let us all get some sleep. It took much longer to get anywhere as he knew if daddy put him back to bed at 11pm, by 2am mummy would be broken enough to allow him to run free. Now we stick to the same approach (DHs) it's been short term pain for long term gain!

No advice but love your bedtime routine with 3 random questions every night. Hope you get a solution soon.

There's a lot of good points here.

She may be worried about me, although I have reassured her. I'll speak with her again.

The camp bed is a good idea. Means I at least get to get out of bed less.

Later bed time may be the way forward.

The star chart is a good idea. We have a 'star of the day' system so if she's helpful or particularly well behaved she works up to that and the person who gets the most in the week gets a prize. It got suspended for a couple of weeks because of bad behaviour that wasn't related to the sleep but I brought it back yesterday.

She's a kind, thoughtful child who would give you the shirt off of her back. Generally she isn't one for being naughty, just excitable. I think we need to totally overhaul bedtime and now is probably the best time as her brother will be moving from his cot to a bed as soon as his mattress arrives so more sleepless nights to come yet!

Im really sorry op, sleep dep is the worst.

I have no experience of asd, just of having a 5yo. This is the bit thst jumped out at me. we would come down with her until she slept then go back to bed.. . We're talking up, screaming, stamping feet and running round the house 4-5 times a night.

I would say as much as possible don't let her out of her room. DS has def regressed with sleeping waking crying because he's alone and lonely. Igo into him, he's not allowed elsewhere - he can't sleep in our bed as he just won't settle. Sometimes he comes in about 6 on the morning but he just talks and wriggles and won't settle so I don't even try on the night. If I come in to him we have cuddles, I ask what's the matter so I can reassure him, and I'll lie with him, sit on the bed or sit n the rocker until he's at least settled if asleep. I think you just to try and repeat that as much as possible, every time.

If you fall asleep in bed with her just she stay settled?

If its coincided with lockdown, I would consider if its due to not working off the same amount of energy physically and mentally that she would've pre lockdown? If she was in YR in school she would have been mentally stimulated and physically active for large chunks of the day, and with lockdown restrictions its very easy to not realise how much pent up energy is being built without the outlet of school. Is she getting out the house for a good walk/run at least a hour a day? And are you doing mentally stimulating activities with her.
If either her body or brain aren't tired she will struggle to sleep.

Good luck

This sounds difficult and I'm sure you must be at breaking point due to lack of sleep. This is a very difficult time for children, with the change in routine and they can easily pick up on the worry and stress in the current climate.

Could you try some social stories during the day with her? Perhaps a visual schedule one for day time and one for night time. Do you have any input from Autism services or a SLT who could make you up a visual schedule. Perhaps if you chatted lots during the day when things are calm about what's expected at night time it may have some impact instead of trying to deal with it during the night when everyone is tired. Good luck OP.

Hi OP

I also have a child with ASD and you have my sincere sympathy as managing ASD plus sleep deprivation can bring someone to breaking point.

In our case melatonin has been life changing but I don’t know how willing a doctor would be to prescribe it for a 5 year old. In any case it helps with getting to sleep rather than staying asleep which seems to be your problem.

I would second a later bed time - try pushing it out an hour (aim for sleep at 8:30) and see if that helps.

💐

I think the star chart with rewards is a good idea, especially if it worked previously for chores.

My NT toddler went through a phase of waking through the night and wouldn't go back to sleep. Due to horrible neighbours abusing us (for this and other things), we ended up taking him downstairs until he went to sleep downstairs for the rest of the night. Fine when he would only stay awake for 2 hours, but then it started getting longer and longer till he'd been up for 6 hours in the night and it broke both DH and I.

So we started giving him treats for staying in his room all night. One of us ended up sleeping in his room with him, but it worked and we felt that sleeping in his room was the lesser of two evils. Eventually we phased out the treats for staying in his room all night.

We're back to using treats again now to get him to sleep all night without us sleeping in his room as our backs can't take it. It's slowly working.

Sorry for the delay in responding.

We actually got a full night last night! Hallelujah!

I should clarify when I say I come down to her it's because we live in a town house so me and DH are on the top floor, the kids on the middle and living area on the bottom, we've only taken her to the living room once.

I'm definitely going to push bedtime back, we've ended up being stuck in a routine but it's now obvious that it's not helping her.

Thanks for all the advice and kind words, it's very much appreciated