Now Reading: What Mon at 11pm Looks Like When Kyle Wakes Up

What Mon at 11pm Looks Like When Kyle Wakes Up

For the past week melatonin hasn’t been working it’s magic around here. Kyle’s been getting up at around 11 PM each night. 

Some nights we will stay in his room and he’ll fall back to sleep in 30 minutes or so…

But tonight feels like one of those nights I think we’re going to be up a LONG time

I’m taking the first shift and I’ll put wifey on duty at about 1 o’clock. 

And in this video you can really get a sense of what these nights are like. 

He seems pretty happy and related…but you can see and hear the breath holding that I’m always talking about.

And I hope you can appreciate how excruciating this is to hear and see every day…

Goodnight all…  Pray to the sleep gods on my behalf…


Written by

Frank 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” :-).

Conversation (21)


Leave a Reply

Your email address will not be published. Required fields are marked *

21 People Replies to “What Mon at 11pm Looks Like When Kyle Wakes Up”

  1. Anonymous

    lol that leopard pants

  2. I actually can't bear to watch the video as it sounds too close to home. We're lucky in that melatonin usually works for our wee man, but when it doesn't, there's hell to pay. Your love has been tested to limits you never dreamed possible….and guess what,,,you've proved that your love for your son is endless and defies all pain and suffering. Stand proud with your wonderful family XXX

  3. I feel your pain! My son has been waking up between 330 and 400am every morning for more than a week now. I am struggling with sitting with him and soothing him, just crawling in and sleeping with him for a couple more hours, or just getting up for the day. It's not pretty lol.

  4. My daughter also goes through these stages where she doesn't sleep at night. Happily she is older and more high functioning and has learned to stay in her room and play on her Ipad or read. It isn't the best solution, but at least we get to sleep through most of the night.

  5. Anonymous

    My son Joseph is 9 yrs old does the exact same things, severely autistic, he's non verbal and is still in diapers! I try and try to get him to use the toilet but can't! Any advise!?
    Also ur soooooooooo loving! Its amazing! I love ur fb page and I didn't know,u had this page but thanks it helps alot!!

  6. Wow! very patient with him. Inspiring for me as a father with a son with ASD. Thanks for sharing.

  7. Thoughts are with you tonight and hopefully you will get some good sleep. My son is a 13 year old twin with Aspergers, who takes melatonin and Risperdal to help him fall asleep and hopefully stay asleep and out of my room. I still have to lay with him for him to go to sleep, which I find myself not sharing that fact with others. Those who don't live with it everyday of their lives just don't get that we will do whatever needs done to keep some sanity.

  8. Anonymous

    My son wakes up at night, too. It is one of the most exhausting parts of parenting a child with autism. I hope your family finds a solution soon. We haven't found one that consistently works over time.

  9. I have not read all the comments. but the same thing happened a few years ago with my son as he would get his second wind at 10pm ha.. I went a few years just having him go to sleep late and pretty miserable… but last year I found an essential oil ( Young living rutavalu blend) that totally puts him to sleep…and after a few months his body actually adjusted so now he only needs it occasionally ( I was introduced to Essential oils when he was DX with PANDAS last year) and doctors were at a loss ( which I am quite used too haha). So I will post a blog post on it from me… disclaimer yes I get it wholesale so I am called a distributor but I dont care where you buy it.. Just wanted to share what worked for us…( I also posted to your facebook page)

  10. Anonymous

    My daughter has lots of sleep issues too. She has good night's and bad nights. She was on melatonin at a very young age due to being up all night. It got to the point where melatonin wasn't working and we were using the maximum dose. When she was 3 we started clonidine. It is only .1 mg and does the trick. She is rested. When she's getting sick or full moons weird as that sounds mess with her sleep.

  11. breath holing seem unconferble do you no why he dose that

  12. Anonymous

    Maybe this behavior is in the air….Lily is going through the same phase of waking up by 1AM and up for the duration. We notice this comes and goes in clusters. During these sleepless times, melatonin is as useless as just giving her a M&M. Other times it is a charm. We, too, do the long night in shifts. Almost makes you wonder about the moon phases…. Top on my Christmas wish list is 8 hours uninterrupted sleep.

  13. You are immensely loving and soooo patient. I am on the fringes of the autism community with my HUG cards. I learn more about this condition every day. I also learn about BOTTOMLESS love and INCREDIBLE patience! May God bless you and Kyle…

  14. You are so patient. Thanks for sharing this late night "adventure."

  15. you are a great dad. period. my son with ASD was up taking the bedding off his 5yr old sisters bed at 445 am (with her in it)… his latest obsession…. when i saw your post I'm reminded that we all have our difficulties, but some are more excruciating than others. you and wifey are such a great team. I'm not here to offer advice…. or make a stupid comment like some of the above…. bc we as ASD parents know that this is our existence until God chooses otherwise…. so what i will say is this…. i wish you a good night sleep… for both you and your wife…. and that kyle sleeps long and peacefully enough to let you hit the REM phase. When you wake, you feel refreshed and ready to take on another day that looks just like the day before :O) Bless you AD!

  16. Anonymous

    Have you tried essential oils? I'm a huge fan.

  17. Meletonion never worked for us. We used Calms Forte and it worked well.

  18. Elizabeth

    So what's wrong with breath holding? He eventually lets it out. I'm new

  19. Anonymous

    He reminds me a lot of my son who is 7. He's been diagnosed with severe autism and intellectual disabilities. Melatonin only worked for us for a few years and we had to move on to remeron. Now he takes remeron, zyrtec and Depakote at night and it usually works (maybe one to two nights a month he wakes up). Then we try melatonin. I usually try to keep my son in bed when he wakes up though because I'm scared letting him be up and doing things will encourage the behavior. He likes his bed though and is usually fine staying in there, just vocalizes.

  20. 🙁 Is it possible he is in some type of pain? Maybe kidney pain (since he was trying to go to the bathroom) It looks a lot like my Shawn's anxiety when he is in pain. Well minus the breath holding. :/ I hope you all get some relief real soon.

    1. I was wondering the same thing…..he also seems to be holding himself at times….I really hate it when our kids can't verbalize what's wrong and we're left with the guessing game.