Autism is…Sometimes Exhausting


April 9, 2012 by Marj Hatzell

Sleep issues and autism often go hand in hand. I’m always all YOU ARE TOTALLY PREACHING TO THE CHOIR, MY FRIEND when someone I know says they are tired or didn’t sleep well because, HELLO. My child is Bugaboo. Bugaboo=sleep deprivation for eleven years. (Yes, I know you are tired of hearing me b*tch about my lack of sleep. HA! I SAID TIRED! HAHAHA!)

Not everyone has sleep issues and certainly not every autistic person has them. We are just one of those lucky families where both of our children have autism AND sleep issues. Top that! HA!  Hardship Olympics! NEENER!

Bug Boy did the usual “newborn who wakes every few hours” thingy as a baby and pretty much didn’t sleep through the night until three years old. While he sleeps much better these days, we have struggled with sleep walking, sleep talking, sleep singing (HILARIOUS, BY THE WAY) and all manner of flipping and flopping like a flounder in his bed. I can tell he’s having a restless night by counting how many times a knee, elbow or his head whack the wall (his room is right next to mine). Melatonin is our friend, yo.

But Bugaboo? Takes it to a whole new level.

Bugaboo slept through the night when he came home from the hospital. I kid you not, he was the easiest baby on the planet. Perfectly pleasant, ahead on his motor developmental milestones, smiley, rarely cried. He was happy to be left alone (shoulda been my first clue) and didn’t cry when he was hungry. If he woke up and I had placed him in the crib to sleep while I went to the bathroom or showered, he wouldn’t cry. He just stare at the ceiling fan. And while he didn’t nap at all during the day (not even as an infant. Weeeeird) he slept so awesomely at night I was fine with it. But his brother was still up several times a night at that point. Huh.

And then Bugaboo turned fifteen months.

And he never slept again.

Well, sorta.

Around fifteen months he began hopping out of his crib (we co-slept but he would go in there sometimes). That was the end of that. It was also when the night terrors started. And the up-all-night parties began. Up allllll night. Coincidentally it was about the time we started early intervention. Or not so coincidentally, since I swear he has the most trouble when he is going through developmental changes.

Around two we discovered the seizures and he began medication and he did sleep a little better. Like, six hours a night. And he’d take short naps. But he’d still be awake most of the night. I was a walking zombie. And Bug Boy was still waking at night. And then we discovered his seizures. And we did sleep studies and..

One summer we were in Utah. We drove across the country, stopped and saw neat stuff and got to Utah to see my in-laws and Bugaboo stayed awake. For two weeks straight (we ended up coming home very early from that trip). That’s when we decided melatonin wasn’t cutting it and he began a sleep med. That worked for a while. Until he grew. Then we increased it, he grew, we increased it, he grew, lather, rinse, repeat. Four years later we still have to tweak every few months.

Even on the sleep meds, he rarely sleeps through the night.

Which is why I blog, dog sit and sometimes babysit. Because I can stay home and do it, make a teensy bit of money and catch up on sleep in the afternoons. Because I’m a walking zombie and can’t put two coherent thoughts together.

But you know that, because you read this blog.

19 thoughts on “Autism is…Sometimes Exhausting

  1. Dawn says:

    Ben–thank the gods–is a good sleeper. I prolly woulda stabbed someone if he wasn’t. mainly my husband.

    and yeah–i had that same first clue too! but luckily he still sleeps ok. Although last night he had his first “i’m scared” episode about sleeping alone in his room…

    hang in there mama–and take a nap for me…

  2. punkymama says:

    I think of you sometimes as I drive home from work at 3am….

  3. RED says:

    I love reading your blog because when I read it I know there is someone out there who KNOWS what a kid who almost never sleeps and does not ever (okay, he may have fallen asleep before 10pm and slept past 6am once or twice in his life so far – he is 9.5 yrs. old) SLEEP THROUGH THE NIGHT is like!

    Yes, Melatonin is our friend too but as he grows it works less and less well….oh well. (Oh Wells is a touring band, btw)….and I love the way you write. (Yes, we have done night terrors, in and out of bed like a jack in the box, etc.)

    Now little girl is waking in the night as well…sigh, talks in her sleep, walks in her sleep (even though that means climbing down a ladder to get off the top bunk), etc. so we are learning to love it in stereo.

    AND you can ACTUALLY communicate and I am so impressed! THANK YOU! for blogging.

    • Bugaboo takes a prescription now. He’s got massive sleep disorder stuff going on. Like, never goes past stage 2 sleep without meds, hundreds HUNDREDS of myoclonic jerks a night.. poor kid. And he gets more hyperactive and manic the more tired he gets. It’s AWESOME.

  4. Anonymous says:

    Our son Jacob doesn’t sleep that well at all. He’s regularly up to 11 PM and beyond sometimes. His mom and I were real night owls too, so we’re not surprised.

    And I have this question for you goddess, when isn’t autism exhausting?

    • Well, except for the sleep thing it’s not so bad, actually. My older one isn’t terribly exhausting, at least, not any more than any “typical” kid (though he has many of his own challenges with autism).

      And I have friends and family members who don’t consider this exhausting. Honestly? It’s most ok.

      Well, except for the poo issues. And pee. And house damage…and…you get my point.

  5. mrsstone says:

    We have an appointment later this month with a paediatrician to discuss Melatonin for Harri (who is 3). I left the hospital less than 24 hours after he was born because his inability to sleep coupled with constant crying was keeping the rest of the hospital awake. Things didn’t improve when we got home. They were some dark days and nights. Although he is much better now (which means we are not up with him) I can hear him on the monitor tossing and turning all night. Poor little guy.

    • When Bugaboo was two we discovered a sleep disorder during a sleep study and EEG. He literally does not sleep AT ALL without sleep meds. Melatonin is great while it works. But after increasing and increasing, we ultimately went with the sleep meds. His behavior improved drastically after that! Go figure!

  6. Loved this! My husband and I are as well raising 2 kiddos that are on the spectrum (we have 3 kids total)

  7. kantal113 says:

    My 8yo step-son on the spectrum has always had sleep issues. He gets up many times a night, so my hubs and his ex started locking his door to keep him safe. (he’s a wanderer and will eat everything in sight, if given the chance. He’s on a GFCF and then some diet, so that is a no-no)

    In the 2 years that I’ve been his step-mom, his sleep cycles have changed again and again and again. To top it off, he’s also not potty trained. He’s getting a lot better, but up until a few months ago, he’d never ever poop in the toilet. Never. You’d put a nice clean pull-up on him and he’d go right ahead and poop in it.

    I digress, kinda. So, here he is, awake all hours of the night, in his room and just letting loose in his Goodnites. So naturally, his solution is to bang on his door to let us know he needs something. LOUDLY and repeatedly until we get there, thus waking the entire household(including the other 2 kids).
    Sometimes, he’d actually need to be changed, other times he just wanted to be up and to play his DS. I can’t think of anything more infuriating than being woken up at 3am, only to be asked if he can play his DS. Grr. But- he’s also cognitively impaired, so it goes with the territory.

    Oh, he also has severe speech apraxia. He can say “yeah”, but that’s about it. He knows some sign language, but not well.
    By the grace of some divine intervention, he broke his leg in January. I know that sounds awful to be grateful for that, but although it was a nightmarish 6 weeks, he somehow got over getting out of bed at night and banging the shit outta his door!
    It seems that since he wasn’t able to get up for 6 weeks, that he got conditioned not to do it at all.
    I haven’t been jarred from my sleep by that insanely loud banging in about a month.
    I am hoping it’s going to stick. We’ll see.
    Hang in there, mama. Oh, and I’m sorry for the crazy-long comment. I’ve been stalking you for a while now and this is my first comment, and it all just kinda came pouring out. I’ll try not to let it happen again. 😉

    • Glad you commented! Please don’t think it is too long, I love reading bout others’ experiences. Is healing for all of us. :). I get you on the broken leg. I secretly (not so secretly) love it when my kids are sick. They cuddle, read, talk to me more….

      Glad you stopped by. 🙂

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