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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…

🙂

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” :-).

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  • :( 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.

    • 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.

  • 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.

  • 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!

  • 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...

  • 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.

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Frank Campagna

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