DS with ASD will NOT sleep!

disneydreamin247

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Feb 16, 2008
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DS has always had issues with sleep. A year ago our neurologist put him on melatonin. It worked very well for a while, but now there is just no sleep in our house. He will not sleep without me in the bed. I usually put him to sleep, then sneak out of the bed. However the past few weeks he will not stay in that bed. He either wakes up the second I try to get up, or within an hour of me leaving. Once he is up he will not go back to sleep. I don't know what to do anymore. I feel like I'm at the end of my rope...there just isn't any down time anymore. Has anyone else ever had this issue?
 
My older DD is PDD-NOS and she didn't sleep until a few months ago -- and she's 6. Honestly, I just slept in the guest bedroom with her until she was ready to move to her own bedroom. I know a lot of people think that's not the best thing to do, but it was the only way I could get any sleep for the past 6 years. For our family, it was worth it. (Of course, it helped that she spent lots of weekends at grandma's house so our marriage didn't suffer too much ;) )
 
I don't mind sleeping with him. He's slept in my bed since he was a baby- I'm really used to it. What concerns me is the lack of sleep. He will stay go to bed by 8, get up and stay awake until 3, and still get up at 6:30 am. I don't know what to do for him.
 
DS has always had issues with sleep. A year ago our neurologist put him on melatonin. It worked very well for a while, but now there is just no sleep in our house. He will not sleep without me in the bed. I usually put him to sleep, then sneak out of the bed. However the past few weeks he will not stay in that bed. He either wakes up the second I try to get up, or within an hour of me leaving. Once he is up he will not go back to sleep. I don't know what to do anymore. I feel like I'm at the end of my rope...there just isn't any down time anymore. Has anyone else ever had this issue?

We feel your pain. Our son also does not sleep well and our neurologist gave us melatonin. It just helped him go to sleep easier. It did not keep him asleep. I will have to admit it is getting better. Before he would wake up and stay awake for hours. We would put a movie on in his room and lie down and keep an ear out for him. Now he will get up at least once a night wanting something to drink and he transfer himself the the lazyboy. We tried to get him to sleep on his bed, but we realized that he slept better on the lazy boy and let him sleep there. I don't know how old you son is. But I remember what our doctor told us. Like everything else, he has to learn what is natural for us, and that is to go back to sleep. I know that this does not help much, but you are not alone. Hopefully, it will get better.
 

I guess I break it down into two parts.

First did he show the symptoms of sleep deprivation before the melatonin or was the therapy base on atypical patterns of sleep. Since the melatonin therapy has become ineffective has it been discontinued and what was the effect of any of this. Is he currently showing symptoms of sleep deprivation (just remember to filter out any indicators, which might just be a manifestation of spectrum “issues”). If he has not displayed significant sleep deprivation symptoms it may be that his brain regenerates more quickly than neurotypical brains. Two items from my experience: first is that I need much less regenerative time to be back at full mental acuity, sometimes as little as an 2 hours, where additional sleep is needed for me is physical rest. Significantly increasing his level of physical activity may help a lot. Second is at the age of 6 and a little older, I remember that dreams were much more vivid than the descriptions of NTs of there dream experiences much more “conscious”. I actually developed an ability to wake up from a dream but continue in it with my visual processing abilities at about the age of 10 for a short period of time (I am guessing 1 to 10 minutes) while still being able to move an be aware of my environment. I also, when hyper-focused on a project, work for 24-36 hours without sleep with minimal cognitive deterioration. This is just to give you the perspective that do not expect neurotypical sleep patterns from your child and try to only deal medically with the issues that have a real impact on him.

The second half is your needs. Our child (ds8) still spends most of his time with us when sleeping. I would suggest finding safe activities for him when he his awake when you need to be sleeping. Computer programs (the educational type) can be an effective and engrossing tool depending on his age or just appropriate video presentations. As part of a couple you do need to find structures and times to have available times to maintain a healthy marriage.

It sounds like he has leaned your trick of “sneaking off” and is vigilant to this so this procedure not surprisingly has lost its effectiveness.

If he is really becoming sleep deprived then I would think a sleep study would be in order, of course it would be best to find a center, which is experienced with spectrum individuals.

While it certainly makes a difference where he is on the spectrum I hope my experience will give you some insight into the spectrum mind and some of its differentials in this area.

bookwormde
 
i just wanted to send you a hug, because we have had the same problems.
josh is 8 and high functioning asd, sleep due to his severe asthma has always been a major issue- it gets better, i promise.
his sleep patterns have got better in the last 12-18 months, he is slowly recognising when he needs to sleep, and he can now read a clock, so will not get up before 7.30.
he has to share aroom with my other child, and his waking was affecting my eldest v badly.
whilst i wouldn t recommend it as a solution, the problems sorted themselves out at the same time we had our puppy. the dog is joshs best friend, he unwinds by telling him about his day, and the dog sleeps with him so he doesnt feel lonely. the bassett hound has really worked for us as a family.
try to get medical advice, there is never an easy soltion, but there is generally A solution.
tracy
ps bananas and milk contain a natural somnifer and we have been known to give them josh before bed they take about an hour, but they do work!
 
Thanks for all the help and suggestions. It even helps to just vent to people who understand. As a single parent it is very hard to work, come home take care of DS, and then go to bed WITH him. That leaves minimal time to handle daily tasks- let alone have some down time for myself. He doesn't have a problem falling asleep (thanks to the melatonin), but staying asleep is the big issue now. We have to go to his counselor tonight and I am going to discuss it with her. This has always been an issue but within the last few weeks it has absolutely spun out of control.
 
i just wanted to send you a hug, because we have had the same problems.
josh is 8 and high functioning asd, sleep due to his severe asthma has always been a major issue- it gets better, i promise.
his sleep patterns have got better in the last 12-18 months, he is slowly recognising when he needs to sleep, and he can now read a clock, so will not get up before 7.30.
he has to share aroom with my other child, and his waking was affecting my eldest v badly.
whilst i wouldn t recommend it as a solution, the problems sorted themselves out at the same time we had our puppy. the dog is joshs best friend, he unwinds by telling him about his day, and the dog sleeps with him so he doesnt feel lonely. the bassett hound has really worked for us as a family.
try to get medical advice, there is never an easy soltion, but there is generally A solution.
tracy
ps bananas and milk contain a natural somnifer and we have been known to give them josh before bed they take about an hour, but they do work!


You know the dog is a wonderful solution! As you wrote probably not for OP's situation, of course, but for others in situations similar to yours. Animals are wonderfully calming, aren't they? Due to her past my DD had horrible nightmares and we have a large snuggly black cat Gus who 'chases her monsters away' and cuddles and comforts her. She had severe emotional issues and the pets have been remarkably healing.
 
Thanks for all the help and suggestions. It even helps to just vent to people who understand. As a single parent it is very hard to work, come home take care of DS, and then go to bed WITH him. That leaves minimal time to handle daily tasks- let alone have some down time for myself. He doesn't have a problem falling asleep (thanks to the melatonin), but staying asleep is the big issue now. We have to go to his counselor tonight and I am going to discuss it with her. This has always been an issue but within the last few weeks it has absolutely spun out of control.

Have you considered time released melatonin? It might be a little harder to find but when DD was at her worst with the sleeping and I found the time released it was a God send.
 
just sending over a hug...we dont sleep either here :( what we do now is melatonin (did you try the slow release?) and let him fall asleep on the couch and then put him into his bed. He is allowed to come into our room in the middle of the night and sleep on our floor (we made a bed for him). Our rule for him is that he can not get up before 4am. If he gets up before then, he has to lay there and not wake up mommy and daddy.
 
You are not alone. :hug: I have been there with my DD.

You need to take care of yourself first. Do you have someone that can help out for a couple of nights so you can get some solid sleep?

Not sure how old your DS is, but there are other meds that can be prescribed for sleep. For my DD the Melatonin seems to work fairly well, as long as we use the liquid which absorbs faster.
http://www.drugstore.com/products/prod.asp?pid=30996&catid=1192&aid=337953&aparam=natrol_liquid_melatonin_&CAWELAID=61265167
Has he had a growth spurt? Maybe his Melatonin dose needs to be adjusted.

Wishing you some restful sleep! pixiedust:
 
I had a non-sleeper too - I used to rock her to sleep, etc, and we'd get a visit in the middle of the night as well. I found out the hard way that the rocking, the co-sleeping, etc, were actually making it so she didn't know how to sleep on her own! So, we began returning her to her own bed at night (even though I hated gettting out of my warm bed, and DD was so snuggly) and I had to stop the rocking too. Since I am a very light sleeper (I can feel it when one of the kids is standing beside my bed at night, even in the dark!) and easily get insomnia, I think that my kids have that tendency too. But I've managed to teach them how to let mom sleep in once in a while, and sometimes they sleep in too. DD17 now gets about 6 hours of sleep a night, but we're working on getting her to at least 7. Her internal clock is off by about 4 hours most days too. Makes the whole day exciting sometimes!
 
My son tried malitonin with little help. We now use clodine but it's starting to wear out on him. he goes to be now at one( i put him to bed way earlier. Without it he could stay awake until 3 then get up at 7!
 












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