#1
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Hi all, I wonder if anyone can give me any advice. I know that there are threads already on this subject, but my situation is slightly different.

My son Jack has always been a poor sleeper, very good at going to bed but waking intermittently during the night. Over the past year or so his periods of wakefulness have increased, along with the length of time he is awake. The pattern has gradually changed also - he used to be very dis-orientated and distressed, now he seems almost manic, laughing hysterically and clapping frantically (his stim). I have to bring him downstairs as he wakes his poor sister with his noise Sad

It seems to have escalated over the past few weeks - waking between 10pm and 1pm, then staying awake until around 7pm the next day. I'm a wee bit frazzled Tongue

I just don't know what to do for the best, he's missing school because of this (because his bus journey home is an hour long and he would fall asleep then, meaning he would be awake until the following morning) I'm tempted to take him to the doctors because I'm exhausted, but I'm just not keen on him having medication. As he won't even take Calpol it's not really an option anyway.

He's not waking with pain, discomfort or nightmares.

Any thoughts or ideas would be most welcome Smile
#2
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Hi maggie,
my son is 3 and a half and was diagnosed with ASD last november, He has never slept through the night from the age of 6 months. We tried everything and i mean everything and have good support from where we live too. Like Jack he goes to sleep no problem i can carry him to bed and sing his favourite song and put him in to bed no problem i usualy rub his head for a few minutes and then leave and he gets himslef to sleep.
He goes to bed around 7 every night and sleeps for 4-5 hours and that is it. He is awake from 11-12 at night till the following night. So me and my partner have to do night shift with him as we have 3 daughters to think of too.
We have tried putting him back to bed but he is wide awake and thinks its morning time, if i didn't take him downstairs i end up with 4 Children awake instead of one and 2 of his older sisters have to go to school so i have no choice. When he does wake up sometimes he is in an awful state screaming and thrashing around like he does not even know your there and i have to put him on the floor to calm down or he would be banging his head of the wall. other times he wakes up singing and shouting for me asking for his breakfast.
He sleeps in a mid-sleepr cabin bed as thats all you can fit in his bedroom. He has a blackout blind and lined curtains to keep it dark. his bed has spare quilts rolled up to stop him banging of the wall so much and he likes the feeling of being cocooned, He has an obsession with silk material as he likes rubbing the material on the label of his clothing so i got him a sleeping bag thinking it might help as other parents have tried that snd it was successful for them.....but no!!!
I tried putting him back to bed and was suggested singing the same songs to him to make him think it was time for bed again, but he is WIDE awake.
I tried a weighted blanket but he doesn't like the covers on, I leave a t-shirt i have been wearing on his bed so he can smell me and think im in the room but that one never worked either.
We took him to the peadiatrician explaning all the sleeping problems infact i think we have discussed it with every one trying to get new ideas but they say its very common for some children with ASD.
He prescribed him melatonin which contains something that is meant to help them to get to sleep, its not something that knocks them out (as i didn't want that like you said), but it has something in it which is natural in all people to help them to get to sleep which a child with ASD does not have a lot of. But we don't have a problem getting him to sleep like some other parents do that part it easy in our case we just can't keep him there!!!!!
We tried it for a few days but we had to take him off it as we found it increased his screaming when he woke up every night and made him more distressed.
I have had to give up in the end as it was driving us crazy as i just had to deal with it and say this is the way it is or i would have cracked up a long time ago. We do night-shift and then one of us takes a nap during the day when he is at morning nursery and our 2 year old daughter is still at home.
I don't know how he does it as he has energy all day right through to the following night he has never napped through the day ever.
He does suffer a lot of illness always has a cold or ear infection he is never well enough long enough to recover from the last one before he gets another cold etc. We like you can not give him calpol as he just spits it out and holding him with his nose pegged to get him to swallow it was a night mare he was so distressed as was i he would be sick. I tried hiding it in a strawberry drink but he still noticed it. The only thing i have managed to get in him when he is unwell is childs ibuprofen its an orange one i found but only asda has it in sachet form or bottle form and i think superdrug do it in orange as well. I can put that in a fresh orange or dilute orange drink and he as of yet has never noticed it, that seems to help him when he is unwell.
He is hopefully going into a sleep trial as he was booked for one in london with a specialist in the field of childrens sleep but it was just to far for us to take him, we are awaiting somewhere closer to home.
I know i wasn't much help but maybe you might of read something you have not tried and it might work for you as you don't know until you give it a go.
I just wanted to let you know that your not the only one as i know it helped me when i thought i was going mad,
it's really diffucult to explain how you can manage it but im used to it now i have no social life as you can't make appointments with friends cause i can't keep my eyes open half the time and i have to think of the other children aswell making sure i can look after them safely.

I did speak to a mum the other day through the national autistic society as both her sons have ASD one was 9 and the other is 11 now but she had the same as me with her nine year old son when he was younger and she gave me "light at the end of the tunnel" saying it does get better so i hope its the same for me. Until then i use every resource around me and im always on the phone making sure i have all the information i can get to make it easier.
I recently used the services of CWD (children with disabilitys team) at social services, and they are fantastic in my area i was a bit scared at first, but there department just do a home visit and see what areas they can help you with by putting you in touch with other people and giving you access to things. They set up for my son to go to a local centre on a saturday from 2-5 once a week and its funded through the "aiming high fund". Which is great as its taking so long to get direct pay up and running so this gives me a little break in the mean time. They are also getting me a safety mat that i can fix to the wall of his bedroom to stop him banging his head. Plus a set of monitors with camera so i can see what he is doing when he is sleeping for safety. Without them i just could not afford these things and if it makes our life and his that bit easier to manage then thats what they are there for so why not use them.
sorry it was so long but i hope some of it might be helpful to you or others
regards
ddsaps
#3
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Thats the longest post so farBig GrinBlush
Some very useful information there and just to back up what you said Social services can help and they can offer support.
Too many people look at social services as the people to take away the kiddies in the nightConfusedBig Grin
But they can really help you so dont be affraid to approach them.
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#4
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I know.....I hope you didn't fall asleep half way through it...lol i just didn't want to miss something that maybe others have not tried.
#5
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ddsaps - thank you so much for your post, the similarities between your son and mine are are amazing, and I am very grateful for your long post, the more information the better Smile

I too was offered the Melatonin but refused it as it was pointless, as you said it's not getting him to bed, it's getting him to stay there! I also try and lay with him as he loves the feel of hair, but he would just pull it instead. Like you I look at him sometimes and think 'how can you just keep going on and on', like he's on some everlasting battery!

I'm hoping it's something he naturally grows out of, ho-hum - just keep on trucking Smile

It really helps to know it's his condition that causes this, which I already knew but was confirmed with your post, again thanks for sharing Smile

Maggie x


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