October 4, 2010

Trying not to go there

Moe's sleep issues seem to have returned as quickly as they left. I should rephrase that - the issues never really left, but with the start of the school year, Moe has been more tired and sleeping through the night more consistently. But over the last week or so, Moe has been waking up again in the middle of the night. I'm sure it is related to his other regulation issues which have also been worse lately.

This time is a little different from last time. He used to wake up giddy, giggling and jumping. He was a little manic, but didn't seem unhappy. These past few times Moe has been screaming. He's inconsolable, crying and pushing us away. It is painful to watch, but there seems to be very little we can do to help him in this state. A couple times, we've brought him to the living room to try to settle him down and as soon as we're not holding him, he runs as fast as he can back to his crib. I've started to wonder if he's having night terrors. Whatever the case, he's clearly exhausted and quite upset that he can't get back to sleep. The whole thing usually lasts about an hour before he's calm enough to fall back asleep.

Last night was especially bad because Jelly has been sick with a cold and waking up more easily. So when Moe finally settled down, Jelly woke up. And when she got back down, Moe was up again, this time back to his old laughing and jumping tricks. After the chaos died down, I sat down on the couch and had a little bit of a meltdown myself. I try not to let myself indulge in too much self-pity, especially when sleep-deprived, but last night was really hard. These night wakings, on top of the regulation issues Moe has started having both at home and at school, like needing to chew all the time, rocking on the rocking chair, and spinning in circles around the rug, are starting to get me pretty freaked out.

At one point last night, Jeff had Moe in his lap and we were trying to calm him with some deep pressure. Moe was kicking and squirming so hard that he head-butted me. I thought he busted my lip (he didn't). And that is when I started to wonder: If this is what Moe can be like when he's three, what happens when he's 5? Or 7, or 13?  I try really hard not to "go there" and I didn't say anything to Jeff at the time, because it bothers him when I travel down that path. Things could be much, much better by then, or they could be worse. Nobody knows.

In the meantime, I've started looking into getting some additional in-home behavior and occupational therapy for Moe and to help me create some more structure and predictability at home.

If you're local to the San Jose area and have a great behaviorist, I'd love a referral! Feel free to contact me at wantapeanutblog[at]gmail[dot com], or DM me on Twitter @wantapeanut


  1. Hey Jen- Ellie had similar night terror issues, probably around that same age. She would not remember them at all in the morning. We never found a great solution to it - except sometimes she would wake up and snap out of it. So, this could also be an age/phase issue.

  2. Hey fellow Spring Chicken! My daughter has bad sleep issues also. She's always happy when she wakes up. She has a hard time turning her brain off. We've had really great luck with melatonin. However, my daughter does really well when she doesn't get much sleep, for some odd reason. We're still giving her the melatonin, but I'm not trying to worry about it as much. Dr. Lynn Koegel has told us that she has a daughter that doesn't get much sleep either, and she's doing great in med school now! So, I guess there are some advantages to not being able to sleep well!

  3. Sounds like it could be night terrors? Luckily K only had a few episodes at a VERY young age. I was reading on Wikipedia that people with Autism don't make enough Melatonin and too much Seratonin; which causes problems falling asleep/waking up. A lot of moms I talked to had great success with supplementing melatonin. So I decided to try to give it a shot, but since I don't really like the idea of it... :/ I gave him 1/4 of the smallest dose, just to see. WOWZA! He used to take hours to fall asleep, would wake up for hours and was a CRAB and a half. Now he falls right asleep, stays asleep, and wakes up REALLY happy and alert. So I am going to keep doing it for just a couple months to try to reset his body if possible. If not, I'm going to talk to the Ped about doing it long term. Many of the moms I've met have said their Peds said there's no problem with long term in their cases. I don't know... I really DON'T like the idea of him depending on something to sleep. But getting very little to NO sleep is not very great for him and his developing mind/body either.... so I'm just rollin with it for the time being. It's such a minute dose, so ???.... All I know his he is doing way way way WAY better now.

  4. HI Jen!
    I'm one of your fellow Spring Chickens and can I say, UGH! Dealing with all of this while sleep deprived yourself is SO hard. I would have had a total meltdown myself. Hope tonight is a better night!!
    P.S. I'm a "Jennie" too! (Well, just to my family these days. I go by Jen or Jennifer for everyone else.) :)

  5. I'm a "spring chicken" and seeing as we live right by each other apparently, we should chat! I sent you a tweet too.

    My son (M.) has the screaming issue at night too, but it doesn't sound like a night terror to me, though maybe a nightmare that he woke from. Some nights he will wake up screaming till we go to him, then be happy and run around the living room for an hour or two. Other times though, it's like what you described. M. will not want us to touch him but if we take him out of his crib he freaks out even more. We end up just sitting in his room or just outside his door, waiting for it to be over b/c there is no measure of comfort we can provide.

    I was just talking to M's behavioral therapist today about his tantrums & she brought up headbutting and other more violent behaviors and ways to try to avoid getting hurt.

    Send me an email or a DM if you want to chat more. marfmom at gmail dot com.

  6. I so feel your pain, my SITStah!

    Billy is 4, and we go through waves of this: weeks of great sleeping, followed by a couple of weeks of waking in the middle of the night and not going back to sleep for hours. Last night was one of those. He was screaming and crying about going to the bathroom and took forever to calm down.

    Several experienced autism moms have told me that sometimes a period of what appears to be "bad behavior" (violent outbursts, kicking, screaming, etc) precedes a big cognitive leap. We've seen that happen a couple of times.

    All the sleep articles I've read seem to be about getting them to sleep initially -- not what to do about getting them back down in the middle of the night. I'll be very curious to hear of any solutions you find. Or you may find that it just passes.

    Either way, I'm very happy to have connected with another fellow Spring Chicken!

    Looking forward to getting to know you, your blog and your family better over the coming weeks.

    All the best,

  7. Yep, we're having night waking here too. I swear our kids are on the same wavelength. This morning, the J-man woke up at 4:30 and was playing/laughing. We tried to ignore him. We gave up at 5:30, and Tim went in to get him, only to find that the J-man had completely shredded his diaper (little bits of gel everywhere!). I had to get up, shower him, get him dressed, then we all piled into the big bed. About the time he got still and I got back to sleep, my alarm went off. It's 9:11AM right now, and he's still sleeping. The stinker. I am very tired today.

  8. yes N does that too. SHe is 2.5 and she wakes up around 4.30 and wouldnt sleep for 2, 2.5 hours. 6 am is right when I ahve to wake and start taking my meetings.
    And the head butts...we had more of those issues when N was 12 months and so, now its the kicks. Last night when she woke up she wouldnt let husband touch her and all she wanted was to cuddle with me. Tell me how is it possible to cuddle for 2.5 hrs in the middle of the night when the child keeps tossing and turning and getting up to see you are still facing her and havent turned your face away even by an inch :(

  9. Poor you! Sleep deprivation is no fun! I thought it would be over once my kids were older, but some nights they both get up - at different times! At least my two go back to sleep pretty quickly.

    It must be very difficult not to "go there." Just like you wrote, it's impossible to know what the future holds. Remember, one day at a time!

    Visiting from the Spring Chicken Tribe! :)

  10. Wow--there are so many things I don't know--and I thought I had done such great studying on autism...my son sleeps fine--falls asleep nearly instantly most nights--but wakes up so early. He has issues at school the teacher says are from being too tired...pushing his bedtime back earlier doesn't seem to help all that much. If it's not one thing, it's another. The whole journey is just one step at a time, especially w our children....

  11. Ditto for the melatonin (we use it off and on) and the bad-sleep-bad-behavior-preceding-cognitive-leap comments. The other thing we grapple with (and apparently many parents of ASD kids do, too) is GI issues. Whenever Hallie is having a bout of reflux and/or is backed up (usually and, rather than or), sleep is quite disturbed. At age 4.3 she still cannot tell us that her tummy hurts, so we have to do much guessing (examining quality and frequency of poops and burps and such, however gross, is very helpful here) and we try to ease things along for her (easier said than done for a food-limited kid). But if this is part of Moe's issue maybe you can figure out something that will work for him...

    Good luck with this. Not sleeping sucks. I should know, since I am not sleeping right now. Sigh.

  12. I am visiting on the WRONG day! This morning was epic for us behavior wise. I was actually just saying in my head, we have so much of Autism under control except behavior. I just can not seem to get the behavior under control.

    And you can definitely "go there." I have had many busted lips, bloody noses, and bruises. And my guy is only 3. When he gets older we will have real issues.

    Once he starts stimming hard he can't stop. I usually just make sure he is safe and let him tantrum or stim.

    And when he wakes up, 4 nights a week, it is like yours, screaming and inconsolable. You are not alone.

  13. Thank you everyone for all of your comments. Wish I could respond to all of you individually (can't stand the blogspot comment system and haven't had much luck with plugins!).

    We do use melatonin with Moe (one Trader Joe's 500mcg chewable tablet a day). It helps tremendously with his ability to fall asleep at night, but it doesn't seem to help with night wakings. Maybe we've traded one problem for another.

    It is so helpful to hear others are in the same boat. It is pretty miserable, but you know misery loves company! Moe had a good sleep last night (despite the fact that Jelly was up for hours with a bad cold).

    Moe's teacher at school sent home list of all the words he said at school today. I think sleep really makes a difference for him, but maybe he is on the verge of some developmental leaps. I've heard that as well, and I can only hope it will be true!


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