Fear of being alone and not sleeping :(

[jlp]

Hi I haven't been on the forum much lately (I have breaks sometimes or it all gets too much) but wonder if anyone has any new ideas about my son's fear of being alone. He's always been a little bit wary (we had to stand at the bottom of the stairs when he went to the loo as he was frightened of the smoke alarm and he refused to go into the bedroom as the eyes of the soft toys frightened him - even when we removed the toys he was still scared)

 

Now it's reached a new dimension - he's terrified to do things that he would do previously such as stay in the bath himself while I got his baby brother out and dressed, go to bed alone (we always took him up but he'd lie alone till he went to sleep), I can't even run downstairs for something if he's upstairs and now he has to be taken right to the toilet - even standing at the bottom of the stairs where he can see me is no good.

 

Bedtime is a nightmare - we got around the fear of being alone by letting him watch a DVD (very tame ones such as Little Red Tractor or Thomas ones that we know haven't got 'scarey' episodes in) and have a night light but now even that doesn't work - his brother has to be in bed too. His brother is a terrible sleeper though and this can't be guaranteed which means I have to sit in the dark with a toddler while ds#1 tries to go to sleep while of course there's too much distraction as the little one plays. Even if I keep ds#2 awake all day ds#1 is now taking ages to get to sleep, he used to conk out at 7 - now it's nearer 10.30 - 11pm.

 

It's so hard practically especially with the little one and as dp works shifts I'm often on my own with the two of them and end up having to carry the toddler everywhere ds#1 needs to go (and often now he's hitting the terrible twos he doesn't WANT to go !). I go to the loo and have to take 2 children upstairs!

 

We've tried Melatonin with the sleep and it did knock ds#1 out quickly (although didn't stop night waking) but dp has vetoed the melatonin altogether now as he doesn't want to drug ds. Of course it's not usually him up and down stairs all night long. The sleep problems only started in recent months previously he was an excellent sleeper but was prescribed vallergan for his severe eczema to put him in a deeper sleep to try and stop him scratching so much and since coming off that it's all went horribly wrong. This is partly why dp is so against further medication. Sob.

 

Any tips / advice / consolation gratefully received

[oracle]

But Melatonin is NOT a drug it's a natural hormone that we all make. The thing is that autistic children often do not make enough of it and so need a bit of a top up.

 

Would your dp accept this? It's pretty much the truth and unless dp is on hand to deal with all of this on a nightly basis then perhaps a bit of a re-think is needed?

 

We are all only human and we can all only function when we have had some quality sleep. And by quality sleep I mean not going to bed stressed to kill in the first place.

 

My eldest son is 18 now and still hates to be alone. We went through some nightmare years with him and he could go 72 hours between each sleep. Sadly David was 13 when this was happening and although we were offered Melatonin he refused point blank to take it. It's difficult to make a 13 year old do something that he is dead set against. If he had been younger then he would have taken it - and no mistaking. It was only after his point blank refusal that I told him that he would then have to learn to be alone especially at nights. Even at 18 it's something he has to work at. So there is no quick fix. But if he had had something to help then I believe his sleep patterns would be much better than they are today.

 

I am a very anti-drug person myself. But after listening to Paul Shattock a few times about the bio-medical differences in our kids I do believe that something like Melatonin is not a drug.

 

Carole

[lil_me]

I'm of the same opinon when it comes to melatonin as carole, although it doesn't cure my sons sleeping problem it does help. Maybe it would be worthwhile getting him to look into the medication without saying a definate no, afterall its you that has to cope at home most of the time from what you have said.

 

My son also went through a not wanting to be left alone phase, now we just have to go upstairs with him most nights then he will settle alone. This took ignoring the meltdowns almost when he was left alone and constant reassurance, wasn't easy as he was waking his little brother up all the time but he soon got used to the idea when we took that part of the routine away. It does seem like you have done everything else possible to remove anything which may be causing the fear, so maybe now he's just got used to the routine of you being there and knowing how to react to get you to stay with him. We had to do it in gradual steps,, progressing from me being in his bed, to sitting on the end of his bed, to being at the door etc etc but it did work when I stopped giving in, which isn't easy when you just want some sleep.

 

Maybe also some sort of reward system at bedtime for going to bed alone and staying in bed, sticker chart or similar, then they actually get something out to going to bed, as of course they don't realise the importance of sleep. My friends son wold not go to bed or stay in bed, so he got one sticker for going to bed and another for staying there, I was impressed when I called her to see how my idea was going as he'd gone from never going in his own bed to a full fortnight of being in his bed and staying there

 

Is there anyone who can help by maybe looking after the little one while you get the other one into a better routine?

 

Best of luck with getting this sorted I know its not easy trying to sort these things out when you are tired.

Edited July 30, 2005 by lil_me

[nellie]

I wish I could get my son to take Melatonin, as an adult it's his choice. I don't need much sleep but that's because I'm incredibly old!!

 

You can find some information on Melatonin here, I hope it helps.

 

http://www.ch.ic.ac.uk/local/projects/s_th...ang/+start.html

 

Good luck, I hope you manage to work something out.

 

Nellie xx

[elaine1]

Isnt any synthetic substance called a drug? I take thyroxine which is a thyroid subsitute that is classed as a drug. I used to take valerian for non sleeping ad gp told me that is classed as a drug too.

 

even asprin is a drug.

[cutie]

As a kid before my diagnosis's I used to be pre-scribed Vallergan forte (a sedative used in kids that itch thier skin alot or have general sleeping issues, although it is not recommended for those who also take stimulant medications) and it used to help me sleep. It used to be in liquid form.

[jlp]

That's what he was given Cutie for his eczema (which is severe) - unfortunately it's left us with sleeping problems. He was a good little sleeper before he was prescribed vallergan forte (and while he was on it).

 

We're at the child and family unit on Monday so will see what they say - they really advise the melatonin maybe they can convince dp if I can't

 

We have a reward scheme - at first sticker charts now 10ps for going to bed without a fuss, staying in bed all night long and trying not to shout at mammy. The 10ps worked better than stickers but not always.

 

I do believe it's a very genuine fear atm but my concern is that once the fear has gone (it will go one day, please!) then the routine of needing all this reassurance, not going anywhere alone, needing DVDs, a light on and his brother in bed just to (eventually!)go to sleep will stay. He does get set in his ways.

 

However even when dp has really put his foot down and said he must stay in bed / go to the toilet alone G simply can't and becomes hysterical - I do believe that if he could he would when daddy is cross as he generally does as he's told for dp even when he would try things on with me. It's just not put as a normal 5yr old thing - he can try it on don't get me wrong, but this isn't one of those times (yet!)

 

Thanks for all the input everyone though - I might try gradual withdrawal, lil_me, on the occasions when I can't get his little brother to bed before him. I even tried telling him daddy was in bed the other evening (he works shifts so often is in bed at funny times) and shut our bedroom door but once I was downstairs G went and checked and caught me out!

[~Jonathan~]

I cannot sleep at night because the dark for me represents death (more people die at night then any other time) and as I'm not able to work, staying up all night and going to sleep in the morning is okay for me though sometimes my sleeping pattern rights itself for a while before going all mad again. I worry when I'm nodding off at night that I will not wake up EVER and I have to go through this elaborate mantra to save myself from God's wrath so I can wake up again in the morning. It's madness!