Long term sleep deprivation-please give me hope

[Andanotherthing123]

Ds is 4 and has autism. He's always gone in and out of very disrupted sleep patterns but for the last four months it's been relentless, night after night, exhaustion. Tonight he went to sleep at 10.30, he'll be awake for 2-3 hours from 2 am ish and then be up ready for action between 6-7am.

It feels like torture and both DH and I are starting to loose the plot. Last night I felt so bloody angry with DS. He shouts out 'I scared' even when I'm standing right next to his bed. I've tried everything I can think of. His paediatrician seems keen to try melatonin and I'll try anything which might give us back some quality of life again.

I am seriously considering changing the hours I sleep (e.g 8pm to 3 am) so I can be awake when he is and I won't feel quite so murderous in those long, early hours.

Will it always be this way? Is there any hope?

Melatonin is good at getting you to sleep, but not at keeping you asleep. There is a slow release version which might be better. If he slept 1030- 6 it would be better than being awake in the night.

We had this with our DS. It got better with blackouts - easy blind - high protein lunch & high carb tea, loads of exercise in the day. But occasionally there is a little blip and it happens again. That's why I'm up, been like this a few days, and feels awful. I think sleeping 8-3 sounds good I might try it.

We've really struggled with sleep too and ds, now 5, had begun starting his day at around 3.30am.

I'm a lone parent and ds now sleeps in with me which helps us as I'm not up and down sat on a cold floor all night.

He has slow release melatonin, which is only available in tablet and he can't swallow it. So I've been told if he wakes before 1am I can give him a crushed one then.

Also though we have just got a weighted blanket. I had dithered about it for ages and I'm so glad we got it now. Ds loves it and is less restless with it, I really think it is contributing to a better night.

Conversely ds sleeps better the more rest he's had. Some days he falls asleep after school and I let him nap for 20-30 mins and he subsequently has a much better night.

I've thrown any sort of rule book away and will just adapt to what ever way gets us the most sleep.

Good luck.

Thanks v much for your replies and sorry you all have to cope with this too. I have always been told how patient I am all my life but it worries me how desperate it can make me feel and how frustrated I feel with ds

The pead talked about slow release melatonin but thought he would struggle to take the tablet. Maybe he could take it crushed up as suggested-i'd be keen to try it.

I also think we'll change his/our hours of sleep too. I feel a bit better knowing we're not alone-

My GP recommended changing my hours of sleep when Dd1 was younger and getting up at 4am. She is 26 now and those were the days when they used quite strong drugs to attempt to change childrens sleep patterns.

The drug made Dd1 worse she was vitually unconsious for 3 hours and then tearing round the house like a loon from 1 am.

So I started going to be before 9 and it made such a difference to us all, we could cope better and it was a lot less stressful.

Good luck

The sleep diary from the paed arrived this morning-it comes with a booklet of things to try and we have to do it for two weeks, then hopefully we'll be able to try the melatonin.

Last night we let him have his iPad during the wakeful hours which we've not done before. It kept him from shouting out (but not from laughing or making general whooping sounds!!) but it feels very wrong. I do think we need to 'throw out the rule book' though as suggested up thread but l don't think the paed would be very impressed!

Try the melatonin. I too was in your position and started on the melatonin last week. The change has been nothing short of remarkable. In just a couple of days we've seen Less fidgeting at bedtime, less anxiety and asleep by 9pm, whereas before we were lucky if he was asleep before 11. DS (aged 8) has more energy, seems happier in himself and is coping better in school.
It's early days but sleep is so important to their overall health and wellbeing.

Call your paed on Monday and stress you've had enough and want to give it a go. Mine sent it to me by recorded mail within a couple of days.

So sorry for you - I 've been there and it is torture. My DS has autism and has always been a terrible sleeper, but things are so much better now. He is 5.

Like other posters I now let DS sleep in with me whenever he wakes in the night. I pop in silicone ear plugs whenever he’s in beside me as then his restlessness doesn't disturb me so much. I've accepted he needs this for the time being.

We have a fan on all night pointed away from his bed for the comforting white noise and to disguise other night noises that might wake him - he's super sensitive to sound. Blackout blinds help, and a night light, and we monitor temperature and heating very carefully as any chills or stuffiness in the air wake him (he always kicks his blankets off).

DH and I try hard to make bedtime a fun and relaxing time. We have special books, stories, funny songs and rhymes that we do only when DS is in bed, I am sitting on his bed and the bedside lamp on. We do this from around seven to eight (usually less time now). It’s so hard for him to wind down but eventually it starts to happen and then we have the light off and one of us stays with him for a chat while the light is off. We fully indulge his special interests – talk to him softly about whatever keeps his attention. He eventually drops off and he is asleep by eight to eight-thirty now most nights and he only wakes about two nights out of ten. When he wakes he goes back to sleep because he doesn't have to stay on his own. We stay with him while he falls asleep. He used to only fall asleep if he was holding my hand or I was stroking his hair but he doesn't need this now. He used to like me drawing pictures on his back with my finger and talking about what I was drawing.

We have to keep changing the ideas and props to keep bedtime interesting or he'll run off. We don't stress when he does or we'll stress him and he won't sleep. I constantly worry we're not doing the right thing but this is what has got us through. Melatonin sounds so helpful and I would try it if things got bad again.

Sorry for the essay. One last thing. I take anti-depressants which make me drowsy. I take them only in the evening and I’m not too drowsy to cope the next day. They make it easier for me to fall back asleep when I have been woken up. I got so used to being woken up by DS as soon as I had fallen asleep that I became unable to relax enough to fall asleep at all - so I had to try them and they really helped me.

There is hope. Things will get better as you try more and more different things - you'll discover stuff that works for you.