Long evenings / bed resistance

[Ahna65]

Hi all

we have a ton of sleep problems with our dd5 (asd diagnosis). Being up for the day from 2 or 3am is not unusual. But wanted to get thoughts on a couple of specific issues

1. I am really noticing repeatedly is that during an evening she will appear to be tired, nearing ready for bed - calm, yawning, passive etc, and then very suddenly will get what id call a second wind and become absolutely wild again - climbing and jumping on every surface, screaming / hysterical laughing , etc etc. It then tends to go on like this beyond 10pm. does anyone recognise that pattern of being calm then everything changing? Any tips for what’s helped to get child calm for bed earlier?

2.she has a specialist enclosed bed, has had so a while (first a different model for about 2 years now and the newer for 2 months or so). In the last couple of weeks she often absolutely loses it when we try to put her in. Not every night, which is odd to me if it’s not consistent, but when she does it’s just hysteria and we have to wait until she’s in a very deep sleep to put her in (typically nearing midnight)

interested if this resonates with anyone on here.

2 may be about control. DS1 also has a specialist bed. His current one isn’t enclosed but does have sides. A previous bed was enclosed. To begin with, he didn’t like it because he couldn’t escape - err DS1, that is the whole point! For us, there wasn’t anything that helped but time.

Is 1 about DD becoming overtired?

@BrightYellowTrain hi, thanks for responding. Interested re the bed without sides - do you mind me asking why? For us I think if it was anything but fully enclosed she would be all around the house in the middle of the night. DH had suggested that we try leaving it open but I think she’d be immediately out. Interesting re control, hadn’t thought of that. Thought maybe she had a bad dream and it’s the association. Guess work sadly as she can’t tell us!!

overtired - used to think so yeah. But then on the nights where she is up from like 2/3am for the day, she often just doesn’t seem to get tired in the day, like still up at 11pm.. so now I’m inclined to think she just needs hardly any sleep. It’s hard to know. But it’s really really draining atm.

we explored melatonin about 18months ago and it seemed to make things worse in the night, albeit better at getting to sleep. Wondering if there are other medications that might work - doctors are not forthcoming but you can read about things online .. obviously everything has side effects which worries me

@BrightYellowTrain does / did your DC have sleep issues?

There are other medications to try. DS1 has tried loads. Sadly, we haven’t found the magic bullet. He takes melatonin (immediately release and prolonged release) and Temazepam, which help but don't solve the issues. Nighttimes are better than they were, but they are still difficult. Has DD been referred to a sleep clinic?

DS1 is a teen now. When he first got a specialist bed as a young child, he started with a SafeSpace bed like this so fully enclosed.

As his MH improved and his mobility reduced, that was no longer necessary. At this point, he couldn’t climb over high sides, so having a roof wasn’t necessary, and we wondered if being fully enclosed was contributing to DS’s distress at nighttime. He moved to one like this.

He now has this but with additional softer bumpers. His MH has improved more and sadly his mobility has reduced more, so the higher sides of the previous bed aren’t necessary. It has sides so he can’t fall out (unless I turn by back on him without putting the side up and he rolls out on purpose to escape like earlier this year which resulted in a broken bone ).

He still uses a fully enclosed bed in hospital and when away from home. When he is more likely to be dysregulated and the environment isn’t DS1 proofed.