Should I just let her lie there every night?

[Al1son]

DD2 is 8 and has AS. She finds it really hard to settle to sleep but doesn't behave badly about it. She's terrified of being alone so lies in bed scared most of every evening until midnight/1.00am. If things get really bad she calls us on the baby monitor but that's only a couple of times each evening.

We go back and reassure her regularly, give her a cuddle and help her to think positive thoughts but I think it must be hell for her every night.

I can hear her one the monitor tossing and turning right now.

I could get Melatonin for her but don't feel comfortable medicating her when I think that if I can get better school provision for her she'll be less anxious and probably sleep better.

She has an iPod with audiobooks on which she listens to sometimes but sometimes hears noises and feels too scared to cover her ears in case she misses something (imaginary) in her room. She wants to watch CBBC iPlayer on her laptop to take her mind off it but I don't allow her to watch things in bed because I think it makes it harder for her to fall asleep. She could watch all night if I let her.

Am I being cruel?

[EllenJaneisnotmyname]

I'd seriously investigate the melatonin, as I think children with ASD or ADHD can be lacking in it, hence the difficulty in getting to sleep. I believe it's more effective in actually getting them to sleep rather than keeping them asleep and it's not the same as sedating them. It's a natural substance that the body produces. If your DD could fall asleep more easily, would that take away some of her anxiety about it?

[EllenJaneisnotmyname]

Ha! Just read the 'Melatonin, is it safe' thread. Maybe ignore my last post, sorry!

[Claw3]

Ds used to be like this, (he still is to a certain extent), a combination of therapy at CAMHS to deal with his anxieties, relaxation techs and positive thoughts methods, changing schools and receiving more help and Melatonin for a short period to 'reset his body clock' have helped.

[Al1son]

I think I'll try to stick it out without melatonin for now. That thread on it is a bit of an eye-opener!

I would really like to think things can get better if we can make some changes at school so it's nice to hear it worked for your DS Claw3. I'm just worried that it's cruel to keep her going like this as it'll probably be a year before things really imporve and that's only if we get the place in the unit we want her to attend.

I like the idea of using melatonin to reset sleeping habits rather than relying on it for a long period.

[Claw3]

I really didnt want ds to take Melatonin, but lack of sleep was causing him even more anxiety. He was laying awake worrying until 1am-3am every night and so was i!

He then began self harming due to anxiety, so in the grander scheme of things, him being able to sleep when he went to bed, rather than laying awake for hours worrying made more sense, if you see what i mean.

He only took it for a month, that is all it took.

I would add though, Melatonin on its own wouldnt have been such short term, if i hadnt made other changes.

Now ds still needs my help to get to sleep, but he is usually asleep by 11pm.

Good luck with the unit.

[Calally]

Ds had awful trouble getting to sleep. Would put him to bed at 8pm and we'd still be lying there bout 11pm or later, with him tossing n turning etc. Saw new paed for 1st time in feb, she suggested melatonin at 4mg per night. Since then things have Bren so different. He falls asleep bout 40mins after he takes it. Makes it slightly easier, have even been able to send ds to my parents & sister the odd weekend!

[Al1son]

I would so love to be able to send my girls to my mums for the weekend. She has my sisters children all the time but mine never stay over. It would be such a lovely thing to do but I can't let it happen unless I'm sure DD2 would be able to sleep.

[Al1son]

Thanks zzzzz. Lots of food for thought there.

She was good at settling as a baby and toddler but it went to pot when she started school.
Her diet is generally healthy although the amount she eats varies very widely. She finds food stressful and boring and I refuse to have battles to persuade her to eat although I do sometimes suggest a small snack or some milk in the evening if I think she might end up hungry.
She does have a bath as part of a regular bedtime routine, primarily for pain from hypermobility syndrome and then her painkillers are timed to have max effect at bedtime.
Light is a big issue because she is terrified of the dark so she has a nightlight plus her main light dimmed to about half power. I am constantly looking for ways to cut the light down because I'm sure it doesn't help but her imagination goes mad if there are shadowy bit in the room so sometimes this is counter-productive. Any suggestions of how to get over this would be very welcome
Sitting in the room with her does sometimes help but I'm trying to avoid committing to spending 1 - 2 hours in there every night. Is that unkind? Perhaps I should do it. I just know that she'll get reliant on it once it starts.
I will definitely try the clenching thing. We currently do diaphramatic breathing as suggested by CAMHS but it doesn't usually help a lot.
I would be happy for her to stay awake at Granny's and watch her laptop but sadly Granny wouldn't allow her to do it (being of the opinion that I just need to be firmer about bedtime routines) so she'd end up awake and terrified for a good chunk of the night. She wouldn't even be particularly tired the next day - I don't know how she copes with so little sleep because I'm on my knees at times! It's a nice thought though isn't it?

[uninspired]

I haven't read the melatonin thread but will go do so now.

However my paed said that it is something that the body produces naturally, but people with ASD don't always produce enough. When DS is very anxious we do give it to him (prob once / twice a month) and it does help him get off to sleep.

Other things that we have tried are a bath with lavender oil, relaxation cd and following a wind down routine at night.

[uninspired]

oh and something I do with both mine as DD is a worrier too, is have paper and pen next to the bed so that if something is worrying them I tell them to write it down and we will deal with it in the morning together. Sometimes this helps them to mentally put it to one side, but not always.

[Al1son]

OK zzzzz you have got me motivated. Today is probably a good day to start because school was ok and she's had a fairly uneventful evening so far.

DH is working late so there's nothing to come down for anyway.

The dark is scary if I'm there but not quite as much as when I'm not so it may work. If it doesn't at least I can say I've tried.

I try to imagine what it would be like to have two children who go to bed and go to sleep at a sensible time every night. It would be so lovely. As it is it's unusual for them both the be asleep at midnight but at least the older one isn't scared. A few nights of sitting in the dark is a small price to pay for a quiet evening if it works.

I did introduce the pad and pen for writing worries down but that was at a time when writing anything was really stressful. Maybe now's the time to try it again.

Thanks for the support and good ideas

[Pixel]

If it's down to fear of being alone could she have some 'company'? I know lots of people don't like pets in bedrooms but maybe something like an aquarium? Fish can be very soothing so it wouldn't be like watching cartoons etc but might take her mind off possible scary things long enough for her to nod off. Just a thought, ignore if it's silly!

[Al1son]

Not a silly thought at all Pixel. She is dog-obsessed so when we got her a dog we gave him a beanbag in her room and he cooperated beautifully by sleeping on it every evening until we went to bed. She enjoyed his presence but didn't try to interact with him which was great but it didn't solved the fears.

[Pixel]

Oh that's a shame.

[WhoWhoWhoWho]

I was going to start a thread for exactly the same issue Al1son, my DS age 6 is exactly the same (but he has always been this way, even as a baby).

It's so hard, I was feeling quite hard on myself the other night as I was really losing patience - my friend pointed out it is the worst time of the day for everyone to be all anxious and wound up as everyone is tired (well I'm tired even if DS isn't)! Mine is very vocal about not wanting to be alone and will cry, wail and whimper until I am by his side so he can invade my personal space, twiddle my hair and whisper gobbledeegook in my ear at high speed.

So I have no suggestions but a lot of empathy! Will have a look at melatonin thread myself, I was offered it for DS a while back but refused.

[hungryallthetime]

My son has been taking 2mgmelatonin for the last couple of years. I think it's made a big difference to him (and us). It means he is less grumpy and much more alert in the mornings and happier at school. He used to be awake till 11ish now he's asleep by 9 (he's 9 yrs old). We have had a couple of breaks in the summer Hols, as I was hoping that taking melatonin would regulate his sleep patterns into going to sleep earlier. Unfortunately it hasn't worked like this and he needs to keep taking the tablets to keep the effect.


It's up to individuals to weigh up the advantages & disadvantages of taking any medication and you could read 100's of articles on any drug that would show numerous side effects! But there are also lots of people who 's children do use this drug regularly & don't experience side effects. For me I'm happy that he's happy and feels better for having more sleep - we had tried other natural methods first.

[Al1son]

Well zzzzz you are a wonderful MNer with an incredibly apt name.

I did what you said and she was asleep by10.40. That is a minor miracle!

I am so glad I started this thread. I didn't feel comfortable with what we were doing but couldn't see what needed to change. I needed someone less involved to make sense of it and you did that for me.

Thank you. It feels quite bizzarre to have time before I hit the sack without feeling bad because she's still awake.

DH has just got home from a very long work day and is very relieved

[EllenJaneisnotmyname]

Well done Al1son! Well done zzzzz!

[Al1son]

Thanks both.

You'll never believe this but she didn't wake up all night either! I know that's not sustainable but it was lovely and if it happens now and again that's great!

I'm off up to run her bath now so wish me luck for tonight

zzzzz I can't believe you are a substandard mother in any way (unless spending too much time on MN counts in which case I think you're in very good company).

[EllenJaneisnotmyname]

Is there something about Epsom Salts in the bath being good to help DC sleep?

[Al1son]

I've read about Epsom salts too but not sure if it was about sleeping.

She settled early again tonight after some protest. I can't quite believed it!

I just have to train DH not to come and interrupt while I'm waiting now grrrr!