Autism & Sleep & Why I Bow Down To The Melatonin Gods
December 12, 2011
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Now Reading: Autism & Sleep & Why I Bow Down To The Melatonin Gods
December 12, 2011
(originally written & published on December 12, 2011 when my son was 8 1/2 years old)
On my Autism Daddy Facebook Page I get asked alot
HOW DOES THE KING SLEEP AT NIGHT? DO YOU GIVE HIM ANYTHING TO HELP HIM SLEEP?? HOW MUCH DO YOU GIVE HIM??
So I thought I’d write a blog post all about it. So here goes… 🙂
Sleep used to be a big issue around here. It would take hours to get the king to sleep even though he was VERY TIRED. Then about 2 1/2 years ago we started giving him melatonin. Melatonin is NOT a drug, it is a supplement and you can find the pill form in the vitamin section of ANY pharmacy. If your kid won’t take pills you can get liquid forms of melatonin online.
Amazingly, the king takes pills VERY well. You can put a pill on a teaspoon with some baby food bananas and he will eat it right down. And in July of 2009 we started giving him melatonin and it has been a GODSEND. I said in an old post that it’s the one thing we’ve tried that has done exactly what they said it’s supposed to do.
He goes thru phases where as little as 200mcg is all he’ll need to fall asleep and other times he’ll need as much as 6mg. So we always have a 200mcg bottle and a 3mg bottle on hand. We give it to him 30-45 minutes before bedtime and it usually works within
that 30-45 minutes.
Now the thing you should know about melatonin is that IT HELPS YOU FALL ASLEEP, but if you’re not tired IT WON’T KEEP YOU ASLEEP.
So if you’re kid is not tired and he falls asleep with melatonin he may be up at 2am. Then you might need to look into a true sleeping pill or a med or supplement that causes true/ long lasting drowsiness…
But for us Melatonin has worked wonders. My son usually falls asleep somewhere between 8:30-9:00pm and sleeps til about 6:00-7:00am. There’s at least 1-2 times per month where he’ll wake up at 2am. Sometimes we’ll give him a bit more and he’ll fall back to sleep, other times he’ll be up for the day… but 1-2x a month is ALOT better than the 3-4x per week that it used to be before melatonin.
Now as to his sleep routine… he really doesn’t have one. The wife calls me “The Sleep Whisperer” and it’s always been my job to get the king to bed at night. Sometimes that means starting up in his room with the tv on & lights on and slowly shifting to tv on and lights off and then tv off. Other nights we will start the bedtime routine in the living room and shift to his bedroom.
Other nights the king will pass out on the couch. There is no consistency to it… and sometimes I try to set up a routine, but my asd kid doesn’t live by schedules and routines, so I say why stress it as long as he falls asleep.
The only thing that’s bad and that I need to work on is that no matter where he is, he still kinda needs me (or mom) physically in the room with him to fall asleep. If we put him in his room 30 minutes before bedtime he will not unwind on his own. I feel like that is something that I need to work on before he gets too much older.
But anyway, long story short…
The king sleeps well thanks to the magic of melatonin and we feel EXTREMELY lucky about this. Every night when the wife and I are sitting on the couch at 10pm watching tv I thank my lucky stars that he’s a good sleeper because with everything else he throws at us if we added on 1am bedtimes on top of it I don’t know what I would do…
Let’s hope this good sleeping phase lasts FOREVER!
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).
35 People Replies to “Autism & Sleep & Why I Bow Down To The Melatonin Gods”
Melatonin has worked miracles for us. Our son was diagnosed at 2 1/2 years old and we have struggled since he was an infant with sleep (and our lack thereof). We put him on melatonin about a month ago after coming across this article and I can say it is a godsend. One month of not having the soul crushing anxiety of the "night routine" (go back to bed, yelling, crying, drained the next day). Melatonin has saved our marriage, made our kid happier (because he's well rested) and we've seen progress in his school and therapies. I definitely agree that melatonin is AMAZING -ASD Mom in Georgia
Maybe next time Kyle has trouble sleeping maybe you can scratch his back because when I scratch my severely autistic sons back and head when he has trouble is sleeping, he says aaaaahhhhhh and unleashes a big loud and long yawn, closes his eyes, gets large goosebumps all over his body even his face, zones out and goes into a trance, breathes slower and then passes out almost immediately after he's in his big trance for like 20 minutes!
Melatonin made my son sleep worse…I'm so happy for those it works for…and jealous!
i can sooo relate to uou on so many notes and this post is by far the closest…..i just recently started working from being home with McKelle since we found out she was on the spectrum and boy do i thank those happy stars that not only in pill or liquid form but also gummys now because she has gotten hop to her cuppie with her.meddie in it….aswell as you having to be un the room kell is only 3 were a lil behind tjere but i have to hild an rock her to sleep EVERYTIME she closes her eyes OUCH MY BACK thanks for all your reads and letting us know where not in this alone ~rob berta from fb
It is great to help with sleep , I found my son outgrew it as his body got used to the doses within a month and it stopped working for him. Currently we have him on an over the counter sleep aid that can be increased as needed. He still wakes up at 3 am but just for a pull up ( can not control bodily functions due to no way to control those muscles) and a drink, then back to bed he goes for the rest of the night. Sometimes I wish there was a sleep med for him but we tried them all with no success.
My now 9 year old ASD son has been taking Melatonin since he was first Dx'd at age 3. He has been on different dosages all the way up to 9mg per night! At that high of a dose though, me and his Dr's tend to agree that it was too much and didn't work as well so we lowered it to 6mg then 3mg and he has been down to 1mg for a few months now! The lower doses actually seem to work better, for my boy at least, this is the case! Melatonin is the only thing he has been on all of these years, and I like it because it seems to "reboot" his brain and prep it for the next day…if that makes any sense! 😉
Liquid lemon melatonin blends great into apple juice. My son wont take oral meds and dumps juice out that taste medicated but not the liquid lemon melatonin. Hes 5 and much happier now that hes not up all night. 1mg usually does the job and we wakes up full of energy.
I don't know to what end you put Kyle on the GFCF diet. My son is 10 as well, and diagnosed with PDD & Cognitive Disability. He has had Epilepsy since he was 10 months old. Most of his development is around that of a 2 year old. He's been taking Melatonin for at least a couple years now, and has worked wonders for him as well! He used to get up half a dozen to a dozen times a night. My son has also been Gluten Free for over a year now. We nixed the CF part of the diet because he doesn't like cows milk & cheese.
The reason I started the GF diet was because I read that it helps behavior. And in my son's case, it did. It completely eliminated my kids meltdowns. But another "benefit" we got from him being GF that I totally wasn't expecting was him sleeping better through the night even WITHOUT Melatonin! I didn't consciously think, "let's see if he sleeps better now that he's GF." It was a pure flop. He would just zonk out in the evening before we gave him his Melatonin, and would end up sleeping through the night without any "help." I was amazed when I realized what was happening!
I don't know how the different treatments your family did "overlapped" with eachother, but I realize sometimes we do a treatment and we kind of have "tunnel vision" for that one particular outcome. Looking back now, I nixed the Casein aspect of the diet because it didn't seem to affect his behavior, but I wasn't paying attention to whether or not being CF helped reduce/eliminate his seizures. And now I have done some reading that is making me want to give it another go to see if it might help in that area.
But I just wanted to mention this because I don't know if you had done the GFCF diet at the same time as Melatonin and may have missed whether being GFCF might have helped his sleep. Just a thought. 🙂
Melatonin saved my sanity, i get a few hours 'me time' when my laddo drops off, I would recommend it to anyone and much better than having to go down the sleeping pill route.
I really want to say, the one thing I love about this post is the fact that you state that your "ASD kid doesn't live by routines and schedules". Mine doesn't either…he is typically fine if we just "wing" it. But sometimes I feel like a crappy ASD parent because I don't have a strict schedule for him that uses the PEC system.
My son has taken Melatonin for about 3 years now after I got worried about giving him so many medications, he was on 75 mg of Trazadone to sleep at one time…He has no sleep pattern either, but with Melatonin he sleeps like a log and is up no later than 9:30 p.m….tons of improvement from the pass out at 3 am and up again at 5 am routine he used to have…
Our nightly routine works by 7 we give Benadryl (Prescribed by our Doctor) I wanted to clarify that we just did not decide to start drugging her on our own. Then I set up a relaxing bath. Low lights, warm water, Epson salt and relation music.(The salt is supposed to help with all the bruises she gets everyday and it is supposed to relax her. I buy it in bulk from Target…it has worked especially on the bruises ) We bathe and then I take her to room which has the lights already lowered and we dress. I read a book to her despite her not wanting to have anything to do with it. I then turn on her stars as a nightlight. Then I leave her alone. The stars stay on for 20 minutes. I sleep trained her on the ferber method and that has stayed with us.
This probably sounds like a lot of work, but we have been doing this since birth. The first week I brought our baby home, I knew something was different about our baby, she would cry for 3 – 5 hours a night. I created this routine to help her sleep and to help me relax because I was suffering from severe anxiety and panic attacks. Our only problem is we are like a military solider about routine, if we start this even 30 minutes late…all hell breaks loose. We don't stay out late and we do not have late visitors. Just thought I would share our way although we have high level autism and SPD off the charts…I Know our situation is different 🙂
Thanks for including the fact that it won't keep them asleep if they aren't tired. I wish Melatonin worked for us, but all of my kids wake up in the middle of the night when I give them melatonin. I'm glad that it does work for so many other people.
I'm the 1% that gets nightmares from melatonin. Then again, I already have PTSD-like nightmares. Sleeping pills just make me calm. The only things that knock me out are pain killers or pain killers mixed with alcohol and Benadryl (only used when I'm topping 24 hours awake). I wouldn't recommend either. Lately, its hurts to brush my teeth or chew, so I take tiny doses of pain killer and sleep 15 hours per day (at least) and have a very weird sleep schedule. I fall asleep between 4 and 10 AM and wake up anywhere from noon to 9 PM. My docs can't figure it out. They blame stress and I'm blaming stress and autism. I have no problem sleeping at my mom's house. One of her cats sleeps by my side and like magic *poof* I sleep.
Consider your wife and you very lucky. Heck, I'm getting to the point where I'm jealous of sleep-deprived people and/or people with typical sleep schedules.
Awake and Eating PB
Midnight is also a supplement, has melatonin, chamomile & lavendar, non addictive, all nature.
thank you for this information, i really need something shes 5 and im tired… so tired… she wont go to bed sometimes all night till 5 am sometimes if im lucky shell go night night at 2:30 , between her and my mother with alzheimer there tag teaming me… but thank you so much this might b my answer for both….. thank you again
I just wanted to say thank you for sharing this! I considered trying melatonin, but I was leery. Your post convinced me to give it a try and I am so glad that I did.
I have written about our results here, http://aspiewriter.blogspot.com/2012/07/help-my-aspie-house-needs-sleep.html
I hope it is OK that I included a link to his post in my blog. I am hoping that others will get a some sleep because of it as well. Thanks again!
We use the chewable peppermint flavored ones from Trader Joes. For those on a special diet, I think they are safe for you. I would say the only problem is if you need a bigger dose. Our son actually loves them, we give him about a half of a pill and it works wonders for getting to sleep. It doesn't make him drowsy, just lets him relax enough to get to sleep once he lays down. We were shocked the first time we used it and were almost scared to hope but, it has worked for us since october of 2011.
My husband is also the sleep expert in out home. We have recently moved and Samuel is getting up in the middle of the night now due to nightmares. I don't know if he is sleeping deeper from the melatonin and is more subject to nightmares or what. He usually slept through the night before this.
For those of you that have children who won't take a pill, we use the cherry flavored sublingual melatonin from GNC. My son just puts it under his tongue for it to dissolve–he doesn't have to swallow anything. He's 9 and only needs 1mg, although doctors have told us that a larger dose is still safe if needed.
thanx tor info i have recently started my son jack on melatonin after it was in my cupboard for a yr! i was so worried about giving it to him for my selfishness sleep, i was told it was safe and can,t believe how good it is he now sleeps well and is happier so am i he still comes in to me the odd nite but thats ok our autisic kids needs lots of love and reassurance with daily issues our better nites help us deal with them god bless you xx lorraine from the uk xx
We use a combo of Melatonin and Benadryl nightly since my son with autism was 4. Without this combo his sleeps maybe 4 hrs and is up in the middle of the night screaming or reciting Sesame Street lines or talking to our friends Buzz and Woody. Thank you Melatonin. Good luck all and sweet dreams
Hi, great post, and i wanted to also say , that we salute the Melatonin gods too, i have a 2 n 1/2 asd son, ( we found out last Oct) classic nonverbal, regressed around 18 months, and giving him melatonin at night has signficantly helped us both! started him on liquid 1mg hour or so before bed, and now we have worked up to 3-4 most nights , it helps him unwind, but he WILL NOT if im not right with him, so i bought a bigger bed and just sleep with him now, because he would wake up n come get me all night along if i didnt. maybe thats bad, but i have to sleep too or things would be even worse. i pick my battles too. but thanks for the good info , you rock!!!!! 🙂
I agree, pick your battles, and do what is best for your child & the person staying up all night. 🙂 My oldest G sons ( lives with us) would fall asleep 1,2 3 am, sometimes after a meltdown because he "Just wanted to go to sleep" & he would cry, "Help me". I slept with him a lot and even at 14 now, I will go in and lay down with him. For the most part, he can get to sleep & stay asleep now but when he is sleepless… I am not staying up all night! So this is where the md told me, pick you battles. I am not as young nor am I as healthy as I used be, so yes sleep makes us both happier and I am good with that. 🙂
My son is 3 and takes Melatonin. We use the liquid one that we find at Whole Foods; the Dr. prescribed 1 ml 45 minutes before bedtime. We were also told that we can give him a little more if he wakes up in the middle of the night.
I have the 3 1/2 year old I just told you about, I forgot to mention, hes been up since 3 am. and he's wide open, he has knee'd me in the stomach, kicked me in the stomach, jumped on my head, and throw a bowl of ceral across the floor,and poured out his juice in the floor. He 's been screaming and yelling at me. This is what my day is like, after being up all night.
Thanks for posting this, I have a 3 1/2 year son, who was dignosed on his 3rd birthday (July 11th), with ASD. I've been telling the doctors since he was a infant, that he wouldn't sleep all night, he'd scream for hours,(in his sleep). After he stopped talking at 2 1/2. I've still been telling the doctors he dont sleep all night. He falls asleep easily, but hes up by 2 or 3 AM, or if he does sleep all night, he tosses and turns the whole time. The doctor said he was too young for medication. I need help, I get to the point where I just don't know what to do, I feel helpless. It's hard to be up all night, then go work all day, then come home and take care of him, hes hard to deal with sometimes, I think if we could just get some sleep it'd make things a little easier. Is there a certain age for this Melatonin? Is 3 1/2 too young?
Our daughter is ten and takes 2 mg every night. It's a miracle supplement!
U can start with 1.5mg up to 6mg as needed. Our son is 4 and has taken it since age 2. Developmental pediatrician recommended it. Works good.
My son is 3 half and takes melatonin..I would call his doc or neurologist ( if he has one) and see what dosage they recommend
Thanks for posting this 🙂 I have been struggling with my son suddenly deciding sleep is for whimps or something lol I have heard a lot about this melatonin stuff being used but not a lot about it specifically. Thanks for the information. 🙂 I appreciate it. 🙂
Since my son was a small baby, I cried hysterically to a handful of pediatricians and a psychologist (BEFORE my son was diagnosed on the ASD)on numerous occasions that my son would not sleep at all and screamed all night long and it was killing me and my husband and our marriage and my other child was starting to go into depression…and they recommended Benadryl…wow, wish I had thought of that. (DUH…How stupid did I look…Benadryl made him worse, not better) So, a Dr finally listened when my son was 10 (still before my son was diagnosed if you can believe that it took that long for someone to figure out he was on the AS) he was put on clonindine which also changed his personality for the worse and now he cannot come off it, but still has trouble sleeping so we now added melatonin. WHICH WAS A MIRACLE AT THE RIGHT AMOUNT! I recently read in a medical article that up to 10mg was fine. In that same article, I read that many autism spectrum children are LOW in melatonin…so it is a good thing. To me the sleep issue was as big as the autism itself. If you cannot sleep you cannot deal with life and lose your coping abilities. So, I too bow to the God of creation who made this wonderful thing called Melatonin.
Glad it is working for you! My son will take absolutely nothing orally! So many years when he was younger he would be up practically all night! I just started letting him sleep on the couch out of desperation, it took many years to get him in a bed. He is 12 now and his bedtime routine is lots better 🙂
Trader Joes has chewable Melatonin too
Also there is a time release melatonin now that works wonders :)))