please please help with sleep issues!

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One of our biggest issues (always has been) with our aspie son has been SLEEP. He is 3 years old and has always been a terrible sleeper. He takes forever to fall asleep and wakes often at night.
My husband has to sleep with him and even then he still takes forever to fall asleep, wakes several times a night and often is up way too early. I'm home with him during the day and because he sleeps so awfully at night, he still has to take a regular nap each day. I have to lay with him for about an hour to get him to sleep- then he will sometimes only sleep for less than 20 minutes.

To put it mildly, this is very negatively our whole family. Both my husband and I have literally broken down crying from exhaustion and frustration. We are so tired all the time- just dealing with my son's sleep takes up so much of our time and energy and now we have a 7 week old baby too. We have tried melatonin- it seems to give him nightmares. We regularly give him benadryl and antihistamines to get him to sleep more quickly, which we feel terrible about. We also give him valerian drops. These barely work and they don't keep him asleep.
We have a bedtime routine, he gets exercise, no stimulants etc- all the regular sleep stuff we have covered. We have done everything but lock him in his room at night as we know he would just get frantic and hurt himself.
I just don't know how much longer we can go on like this.

I get so frustrated with him that I hold him down in bed and yell at him and this is not what I want! I feel like a terrible person and now I think this is possibly making things even worse as he has such a negative association with going to sleep. I'm at my wits end and I agonize over this every day, often crying my own self to sleep. My husband's work suffers too- this is just ruining our lives. I honestly feel like we both have had thoughts of running away or even suicide at the worst of times. It's that bad.

He wakes at night screaming if no one is in bed with him. He won't stay in his room alone. He has middle of the night terrors/tantrums even if my husband is right beside him- and it will take an hour of reading stories and calming him down and then another hour to get him back to sleep again. He has night lights, we play music for him, he knows we are always right there if we are not in the room, but my husband usually is anyway.

I just don't know what to do anymore but I know we can't go on like this. I try not to, but I'm starting to resent my sweet son. My newborn fusses and cries by herself because I'm held hostage in his bed trying to get him to sleep. We feel like prisoners at night and during nap time. He can't explain what the problem is when we try to talk about it during the day and he is absolutely out of it and inconsolable at night.

PLEASE help us. If you can give me any advice about what to do, anything to try.
If you are an aspie can you give me insight into what might be going on in his head? Is he afraid? Does it sound like sensory issues? Is this just extreme but typical toddler sleep issues? Should we lock him in his room? Should we just let him stay up until he falls asleep from exhaustion? Anything???

I'm an adult aspie who doesn't have kids. Sleep problems are pretty normal with aspies. As a child, it usually took me more than an hour to fall asleep. I'd suggest you go to a doctor with your son to see if anything can be done about this, but also be aware of the fact that this can simply be an aspie trait that you'll just have to accept.

I have always had sleep issues as well. Even now it is almost 3 am and I prefer not to sleep.

Have you considered your son may have sensory issues? If his bed clothes bother him he may not be able to get to sleep. Or if he needs deep pressure input (like I do) he would need a weighted blanket to comfort him to sleep and keep him asleep. So many things can contribute sensory wise for a miserable night for him. Is there a clock in his room? Maybe its ticking drives him bonkers or even scares him because he doesn't understand what his sensitive ears are hearing.

If I sleep at all in the day I will not sleep hardly a wink at night. This includes me at three years old. My son quit naps at 18 months for the same sleep issue. You giving your son a nap may just perpetuate your sleep issue. If you need a break in the day find another way to get it than getting him to sleep for it. Get him independant play things related to his special interest to occupy him for hours.

That being said... anything out of his set routine can upset his sleep. Even his stuffed toy on a wrong spot on his toy shelf can traumatize him. Sameness is very important and once you set that routine (like daddy sleeping with him) will be so very hard to change it. Unless you find a solution that clicks with him. For instance I have water toys. You know those little items with oil and water that sloshes around making neat soothing flowing patterns? I love watching those and they lull me to sleep. Find a replacement that he chooses. I think people on the spectrum innately know what is soothing. Just like stimming. Never disrupt it - that is not good for his health. Disrupting stimming behaviors such as rocking or even visual or verbal stimming can be detrimental and cause sleep issues as well. We stim for a reason.

I am just thinking out loud - not saying you do any of these things. You do mention holding your son down to get him to bed... can you please explain why getting him to bed when he is clearly not ready to go is so important? If he requires less sleep than what is typical for a NT... it doesn't mean it is bad for him. I have never in my life (yep... at age 3 too) needed more than five hours sleep. Matter of fact if I got more sleep than that it made my cognitive abilities worse and my behavior less than desirable. What harm is there letting him to his own devices in his room to wind down and prepare for sleep doing calming activities for him? If he wants no pj's... ok... if he wants to stack blocks... why not? He is winding down and preparing for sleep without dangerous medicating.

Are you aware many spectrum people are over sensitive to medications and even have the oposite reactions to what herbs and meds are meant to do? You can be adding to his sleep issues by dosing him up... as you said melatonin seems to give nightmares....

We do not behave as you expect because we have different needs... as you know. But knowing these things is not the same as grasping, accepting and allowing these needs. Follow your sons clues, objections and wants and your sleep issues and other issues will resolve themselves. Spectrum disorders hinders his ability to tell you things. He even may answer questions yes when he means no. The one thing you can count on is he will always be able to 'act out' or 'tantrum' or 'misbehave' when words fail him. There is a nuerological force driving those behaviors. Find the source... fix the behavior. Just because he can't tell you doesn't mean you can't puzzle it together. Is it a touch (clothing) or sound (clock ticking) or smell (laundry soap or breath)... Most spectrum children want to please everybody and push passed endurance levels to do so... so misbehavior is not the same as a willfull NT child tantruming. Not saying a genuine tantrum can't happen... just less occurring.

Hope this helps... it isn't easy I know... and I hope I didn't come across in a way I didn't intend. Also sorry for any typos... typed this out on my kindle. Goodnight.

We had a ton of sleep issues, too. He still has them, but not as bad, and we can live with it, if you know what I mean. My son is seven and sleeps through the night (or at least does not wake us up) most nights. When he is sick or worried he does, but not on the vast majority of nights.

At three he could not. We did not use any meds. He grew out of it on his own, for the most part, about a year ago. Each year he would waken during the night a little less frequently.He always had a skewed sleep schedule, needing a later bedtime and less sleep. We have shifted it now, where his natural falling asleep time is nine. We have not managed to get it lower than that, so we are just leaving his bedtime at 8:30. If I gave him a 7PM bedtime, he would still fall asleep at nine, but he would be constantly wanting to talk to us and go in there.

So the only advice I have, sadly, is to figure out if maybe letting him stay up later might reduce the amount of time spent getting him to sleep. Also, we do the last half-hour to hour before bed with no TV and no electronics. He just reads, which he finds more relaxing.

I am also a terrible sleeper, and always have been, although I did not wake my parents up. I would just wake up and think things to myself.

Melatonin can give nightmares with high dosage. Have you discussed this with a professional or just bought some melatonin yourself? In some countries it is available without prescription. Using it with the wrong dosage or at the wrong times may make things worse, because it is not a sleeping pill but a hormone that regulates circadian rythm.

Here's something about the medical use -- wiki

As other have mentioned, low natural melatonin levels are more common in AS people. But you don't know yet if the problem is melatonin or something else. There are tests to see if melatonin levels are normal or not. It can be measured in saliva. I was tested by a neurologist for that. Such a test should be able to rule out whether that is the problem or not.

You mentioned that he doesn't want to be in his room alone. Is he clingy at all times in all rooms, or only at times he is supposed to be going to sleep? Is there anything that he will spend time doing alone? Is there anyone that could take over for a couple of days to let you get some more sleep to be able to cope better? It sounds like between him and the baby you are at the end of your rope and in danger of abusing him (the fact that you are aware of this and looking for help is a good sign).

You said that he needs the sleep and that is why you are forcing him to spend two hours a day fighting you over a nap to only sleep for twenty minutes. Is this based on his behavior or on parenting advice? Have you ever tried just letting him go to see when he'd fall out on his own? I know that's like the opposite of what parenting places generally say, but it's good to start an experiment with a baseline.

It really might have to do with him needing less sleep. I have three kids and each of them needs a different amount of sleep. The oldest needs 6-8 hours, the middle is insufferable if he doesn't get a solid 10 hours, and the youngest gets about 8 hours per night and really needs a two hour nap to avoid crankiness, but the fight involved isn't worth the lack of crankiness to me.

I've always been thankful that none of them are like I was as a small child. According to my mom I stopped sleeping during the day at about 6 months old, and never slept more than about 4 hours a night until I was almost 11. Luckily for her I was both extremely happy to be allowed to occupy my own little world (not clingy at all) and a rule follower. They ended up with a rule that I did not have to sleep at night, but I did have to be in my room and be quiet (nearly silent as the rooms were literally separated by two pieces of 1/8 inch thick fake wood paneling) from the time my parents went to bed until they got out of bed. I really don't know how my mom survived the first four years, but she shipped me to Head Start as soon as I turned 4 and I think took naps with my sister (who did sleep) while I was at school. I realize at three this can't be a good rule to go by though. I wouldn't have trusted any of mine to be awake when no one was watching at age 3.

But that rule they had gives me this idea. Are there any teens that you would trust to watch your three old for a couple of hours in the afternoon? Like in one room of your house, giving you time to spend with the baby (nap with the baby), but you'd still be in the house in case of emergency.

A friend of mine recently took her 7 yo (NT) for a sleep study. They found out her horrible sleep patterns (or lack thereof) were because she suffers from sleep apnea. She literally wakes up multiple times a night because she is suffocating . I know this is not common in young children so may not be helpful info for you at all but just thought I'd share. The docs recommended she have her tonsils removed which they have just done. I'll let you know if they find this actually helps her sleep through the night.

Now for what we do - I gave up and I let our 7 yo sleep in the bed with us every night. We also tried melatonin but it affects him as you said even at a very low dose. We do you Calms Forte which is a very mild herbal sedative. Mine is older than yours but I cut out naps altogether. Even a short nap in the afternoon makes getting to sleep 10 times worse that evening. Diet-wise, other things besides known stimulants can act as stimulants, a common one is red dye no. 40. It does sound like you could really use some good medical advice. Getting enough sleep is important to all of our health and if you are not healthy and well, you cannot take care of him so YOU and your husband need sleep even if your son seems to need less of it. If you don't get anywhere with the mainstream medicos, I would suggest talking with a naturopathic doctor especially if there is one around that works with ASD and ADHD in children. Ours is great! Don't beat your self up. Chronic lack of sleep can literally make you crazy.

We also struggled similarly. Since you're experiencing night terrors (you are aware that during a night terror your child is actually asleep, right?) why don't you go directly to a sleep specialist? Explain everything just as you did here.

One thing we found was an issue for my son that sounds silly, but really turned out to be an issue: literal language. DS was TRYING TO FALL ASLEEP WITH EVERY MUSCLE IN HIS BODY and of course that made it worse. He obviously couldn't control when he falls to sleep, so us saying "Go to sleep!" made him frustrated and that much more resistant to the idea. We finally had a therapist who told us to tell him that bedtime is a time to rest in bed and be still, and if sleep comes that's good, but if not it is still a time to stay in bed, rest, and be still. It will take a while (especially with a three-year-old) for this to sink in, but try to make it a part of your bedtime mantra.

We did try an adult relaxation CD (there's a Sesame Street song "Up Goes The Castle" that's the same sort of thing) when DS was 7 or 8 and that helped some. We tried a weighted lap belt but never got the weighted blanket - but I get the impression that DS would have benefited from one.

Some of it - while DS still struggles to go to sleep and hates to be alone, it did get better as he got older...it just took longer than we expected.

my son was always like that. He is now 7, and sleeps in our bed. I have to give him melatonin or it takes him hours to fall asleep. he then will wake if no one is in bed next to him. he will cry until someone lays with him (if we are not in the room). he has such anxiety about sleep its sad. He NEEDS a body next to him to sleep. It is VERY HARD for us. More hard for DH as he really didn't want any kids in our room, and DS is in our BED.

UGH...I feel for you!

My son is now 11 and sometimes sleeps alone in his own bed. We tried locking our bedroom door, but he screams and pounds on the door in some state that is not awake, so that doesn't work. Last night he woke us up in the middle of the night and I ended up sleeping in his bed. Today ia m barely able to function and it a big day at work. I am working from home because mys tomcah. Is very upset--a typical consequence of sleep deprecation for me.

My head is pounding. I am half asleep typing this and I am supposed to deal with three projects simultaneously at work but my executive function stuff is bad today.

I read this thread hoping someone would have an amazing solution...

Good luck to us all!

Could you and your DH split the night, so that one of you could sleep from say 7pm to 1am and the other from 1-7am? Then at least you'd each get a dedicated block of sleep while the other lay with your son and took care of the new baby. You'd have to pick the times that would work with your newborn's feeding needs, and it might be a couple of months till he or she is sleeping a long enough stretch to make this work.

Another, expensive, idea would be a night doula/night nanny. My dad gave us money for one several nights a week when my twins were first born (and my mom covered the other nights), and it was a life saver. This person would basically care for your DS so you could sleep -- maybe someone with autism experience who could work on figuring out what sensory strategies and routines work better for him. (It's hard to observe and think when you are beyond exhausted.) If you qualify for respite care or have an extended family member who would be willing to help this might be worth considering.

I can literally feel the exhaustion and frustration in your post, and I want to start by saying yes, your needs matter, too.

And then I have to say that I don't know how to solve it.

We tried so many different things with my son and, in the end, I think trying to change the realities exhausted us more than giving into them. Failing to meet my son's needs at night caused other issues in the day, and eventually my husband looked at me and said, "I think you should go back to sleeping with him."

And that was with a new baby in the house, just as you have.

So, we kind of figured it out that way. I remember a period where we had a mattress on the floor where I fell asleep with the baby, and my son's bed angled next to it (all potential gaps and traps for the baby carefully eliminated) so my son could fall asleep with me holding his hand.

Then we went through another period where he was allowed to stay up as late as he wanted with his books knowing I was in the next room with a baby monitor on, that helped him feel I was there.

Guided imagery style stories were something we did for years and years and years - very detailed, descriptive stories without an eagerly anticipated "what happens next."

And so on. Little steps as he was ready for them.

And then, eventually, he outgrew it.

And my daughter started to have sleep issues

Lol, yeah, its like that. Must have been a dozen years I was sleep deprived and spending little time with my husband. But that, too, does pass.

I will add that there is nothing wrong with a 3 year old needing daytime naps; that is quite normal, even if we, as parents, would rather the child pile those hours into the night. If your child goes to preschool or daycare they often actually require the naptime. Maybe you can find a way to work with that instead of against it.

I also spent a lot of time in those low-sleep years reminding myself how it would someday serve my son well that he doesn't need as much sleep as most people. And it does. He can take red-eye flights (doesn't sleep at all) and be OK the next day. He recently pulled an all-nighter for school (just a sophomore in high school, I thought we were still years away from that) and was fine the next day. And so on. The kid knows how to function in all sorts of odd conditions (and can't function in so many basic ones - the never ending puzzle of ASDs).

Anyway.

I am firmly in the "whatever gets your family through" camp. If you think essentially ferberizing a child might work for that unique child, go for it, but somehow my gut tells me that you need an NT child to have a chance at that one. If giving in and sleeping with the child works, you do that. Basically, you shut out all the disapproving voices that surround you (and there are always so many, everyone seems to think they have "the" way to parent your child) and do what gets your unique family through the rough spots.

Just for clarification, here is information on sleep (night) terrors from the Mayo Clinic - they are a sleep disorder and if you're seeing these symptoms, you might want to check with a doctor and ask for a specialist: http://www.mayoclinic.com/health/night-terrors/DS01016

Thank you all for the thoughtful and insightful replies. I can't say how much I appreciate you taking the time!

I have sometimes wondered whether my son suffers from night terrors. If that is in fact the case, what is the remedy or course of action for THAT?

We have in the past week or so just given up on his nap and yeah he does get to sleep easier but he is exhausted. There are a few hours in the afternoon where his eyes are just popping out of his head and he can't really do anything. He does need a nap but I've found it's better for our relationship (and my sanity) if I don't have to lay down and/or fight with him for 1-3 hours a day. He is starting preschool in the fall and they do have a nap or quiet time but I don't think they require the kids to actually sleep, just to lay quietly on a mat (...good luck with that...). He does need a bit less sleep than other kids I think- but definitely not THAT much less. I think he does ok with about 9 hours at night + 1 hr nap, better with 10 hours at night. A lot of the kids we know his age are sleeping 11-12 hrs per night and still having a nap, so he definitely needs less than that- I don't think he ever slept that much, even as an infant! Letting him stay up late doesn't work well- he may go to sleep a BIT faster but his sleep is even crappier and then he still gets up at the crack of dawn even more exhausted. As for screen-time at night, DS doesn't really have any and when he does, it doesn't seem to affect him. Actually, one thing that seems to relax him around bedtime is watching the itunes visualizer while listening to music.
And yeah, he's THREE- we can't leave him to roam the house at night by himself while we sleep. He doesn't want to do that anyway. He wants someone with him.

I think he has developed anxiety around sleep- probably somewhat because he has picked up on the stress it is causing around the house. And he is generally a high-strung kid- anxiety issues run strong in the family. He is not very clingy during the day though and he likes alone time. He's not a fearful kid- that's why this night time stuff makes little sense to us.
I do feel for him- I am a poor sleeper with insomnia and anxiety issues for as long as I remember. I remember as a kid silently puttering around my room until the wee hours or sneaking out to sleep in my sister's room. But when it was bedtime I would say goodnight and be in my room and not do "wake time" things until morning. I'm not sure what I did at three, but from what my mom says I wasn't like my son is. I would be happy if he was ok with looking at books, listening to music, or whatever in his room at night and letting the rest of us sleep. I know he is capable of falling asleep on his own because I've seen it- he has gathered up his stuffed animals or some books to play on his bed and just because he was exhausted, fallen asleep by himself at odd times. He's done this maybe 3 or 4 times- only after 2 or 3 days of little to no sleep though.
We don't really care about disapproving voices or what others think of our family- we too think that whatever works is fine. But my husband sleeping with him isn't really working. He's exhausted and we do miss sleeping together.

A lot of this has gotten worse since my daughter was born 2 months ago. So obviously, as for any kid, having a new baby in the house adds to anxiety and behaviour problems. I'm also looking into dietary stuff- he is already GFCFSF but now I'm thinking of chucking corn out with the rest of it. He doesn't eat much processed food and we're careful about dyes and artificial stuff.

He is still young for quided imagery- it works to calm him out of his fits and tantrums sometimes along with just reciting from his favourite story books. But it doesn't get him to sleep.

I try to remember that all of this is much more difficult for him and that he is young and doesn't understand a lot of stuff yet. But it's true that is a health issue and we have basically no help here- we live abroad and have no family and not really friends to count on. It's hard. We need something to change.

I had sleep problems for a long time and then started reading about hammocks. Instead of a bed I have a 12 foot hammock. This gives me the feeling of suspension I love, sensory input, and movement. I love it. If you try this be sure you get a really good one meant to be a sleep system and not a generic garden hammock. For me it's been a miracle as I hate meds. I use a weighted blanket for anxiety at night. Hope this helps.