Tuesday, July 12, 2011

Sleep Interview with 5 ½ Year-Old Luke Who Can’t Shut Off His Brain

On a hot summer night...
The kids stripped not only themselves, but one of their pillows, down, before finally crashing in Luke's bunk.
“Just like sea otters, children love to play all day…   
God knows that all animals and people need rest.   
He wants us to get sleep so we can be healthy and happy.   
When we sleep, our bodies grow and get stronger.   
Playing and resting are both important.”

Five-Minute Devotions for Children: Celebrating God's World as a FamilyThe other morning when the kids and I read this portion of the “Playful Sea Otters” devotional in our Five-Minute Devotions for Children, Celebrating God’s Word as a Family book, I was reminded of the S-O-S Best of the Best topic for this month:  Sleep and Children with Invisible Disabilities.

This topic resonates with me since I have been living with interrupted sleep– and sometimes outright lack of it – myself for the past five years due to the usual mama stuff of nursing babies and attending to the night wakings of three young children, compounded by the challenges of having a child with an “invisible disability” whose sleep is definitely affected by his uniquely wired brain.

A  5 1/2 Year Old Explains Sleep

Truly, Luke’s take on sleep is a bit different than most kid’s.  Here it is, in his own words, with Mom commentary in italics.

Mom:  What is sleep?

Luke:  Awake time. 

Luke has gone through periods where he has outright fought going to bed and other periods where he got up and up and up and up.  He is currently able to rest in bed, but will often not fall asleep for hours, calling out to us randomly when we think he must already be asleep.

Mom:  What do you mean by that?

Luke:  I mean I stay awake every night.

Mom:  Why do you stay awake every night?

Luke:  Because I can’t shut off my brain.

When Luke was quite young, we thought it was light that prevented him from sleeping.  Once he became verbal, we realized his trouble sleeping had a lot to do with his mind.  He continued to have trouble calming down to sleep, and, also, began to pop up with the most thought-provoking, is-he-really-thinking-about-that-at-his-age questions and comments after we thought he was sound asleep. 

In recent times, we have been able to help Luke calm his body and mind a bit by:
  • using our 5 T’s routine
  • allowing him to sleep with others
  • giving him things to focus on – such as a space mobile of late since he loves space
  • listening to stories and music on CD’s
    Essential Sound Series - CALM A current favorite bedtime CD of his is Essential Sound, Calm, Music for Healing and Wellness, which we were lucky enough to win from Pediatric Occupational Therapy Tips some time ago.  As Dr. Zachry suggested in her giveaway post, the soothing classical music on the CD seems to “naturally slow down the heart rate and relax the mind through simple harmonies and slowing tempos.”  It has not proved a full-proof panacea for Luke's ever-active brain syndrome, but it sure seems to help!  Thank you, Dr. Zachry.

    Mom:  Why?

    Luke:  I just can’t.

    Thankfully, although he thinks he can't, he eventually does.

    Mom:  Do you ever sleep?

    Luke: Ah.  Never.

    Mom:  Truthfully?

    Luke:  Never.

    Mom:  So, when it looks like you’re sleeping, what are you doing?

    Luke:  I am pretending.

    We believe that Luke knows that he actually sleeps, but he has insisted for years that he does not.  Even when we have showed him pictures of himself sleeping, he has claimed – sometime playfully, at other times, quite willfully – that he was just pretending or that he was simply resting.  We know his claims actually are true at times, because there have been times when we have thought he was definitely asleep, only to discover he was not.  But, we also know that he does, in fact sleep, of course.  The  floppy arm test, moving him, etc. prove it. 

    Truth aside, we have discovered that if we persist in trying to prove that Luke does, in fact, sleep, as opposed to just resting or pretending to sleep, he  tends to get so wound up that he takes longer to get to sleep.  So, we play along with his declared “I am pretending” perception for now...

    Mom:  Do you feel better after you pretend to sleep for a long time?

    Luke:  Yes.

    Mom:  Why do you think you feel better?

    Luke:  Because I shut my eyes.

    Mom:  What does it do when you shut your eyes?

    Luke:  Helps me.

    Mom:  How?

    Luke:  It makes them not watery.

    Just recently, Luke has begun to notice his body’s tired cues.  When he complains of different physical feelings at night, we explain that these are ways his body is telling him it needs to rest.  Understanding “sleepy cues” is something we are working on making Luke more cognoscente of.

    Mom:  When you get up in the morning, do you feel better than the night before?

    Luke:  Yes.

    Mom:  Why?

    Luke:  Because I pretended to sleep and I started to, but I didn’t really. 

    Again, for some reason, Luke prefers to believe that he doesn’t actually sleep.  We can deal with this as long as he is, in fact, sleeping better.

    Mom:  Is sleep important?

    Luke:  Mm hmmm.

    Mom:  Why is it important to sleep?

    Luke:  It helps you grow…  That’s all I know.  Please stop.  I’m tired.

    Hoorah!  It has taken years to get Luke to recognize that sleep is important.  But, as his answer hints, he does not like admitting it. 

    Mom:  If you’re tired, why don’t you go to sleep?

    Luke:  Because I don’t like to.

    Honesty is a good thing.  Finding ways to make going to sleep something Luke likes to do would be even better!  We’re open to all tips.

    Mom:  What are some things that help you rest at night?

    Luke:  Thinking about outer space…  The 5 T’s…Telling stories…

    Luke often latches onto a specific theme or topic for months or even years.  His current passion is space, so we encourage him to think about it when he is in bed as a way to relax or at least keep relatively still,  Thus, we sometimes hear him telling stories about the space drawings he has decorated his bedside wall with or find him looking at or reaching up toward the planet mobile we hung near his bed.

    The 5 T’s is our bedtime routine, which both Luke and Nina follow.  We posted about it with a printable here

    Admittedly, we have periods where we get lax with our 5 T’s – especially when Daddy is in charge of bedtime and the kids manage to get him to lay in bed with them for the “talk” portion.  That's when the "telling stories" comes in, too.  The 5 T's get elongated into a Luke-can-outlast-Daddy fest.  Daddy enjoys talking with the kids about their days.  They beg him to teach them some German and to tell them made up stories.  Then, after Nina drifts off, Luke cons Daddy into staying longer, chatting about all manner of things until Luke outlasts Daddy in staying awake...

    Luckily, the 5 T's seems to be the easy enough for us to get back into.   In fact, of all the things we have tried to make bedtime more peaceful for us all – and we have tried MANY – our 5 T’s for Bedtime seem to work best as a wind-down cue for our children.

    Mom:   Is sleep a good thing or a bad thing?

    Luke:  Good.

    And, with that, I will close.   

    Sleep is a good thing, and, if nothing else, we consider it a victory that Luke knows that it is.  We all seek what is good!

    How has sleep been at your home lately?  Do you have a child or know a child that is sleep-challenged?  

    “Invisible Disabilities” or not, learning effective sleep hygiene is important for all children.  What routines and resources have you find most helpful for this?


    Danette said...

    What a fabulous post! I thoroughly enjoyed the way you handled this topic!

    Martianne said...

    Glad you enjoyed it, Danette, and look forward to reading the other BOB posts!

    Asperger_Mom (Chi Yon) said...

    You had me at routines. You have a nice set up there. And I am impressed he is able to communicate so effectively. Nice job on your post.

    AutismWonderland said...

    Fascinating! Truly, it gives me better insight to what my own 5 year old may be thinking but cannot express. Your suggestions sound great, willing to give them a shot. Printing out the 5ts :)

    Thank you!

    Miranda said...

    Thank you for your post! I have a 3 year old SPD kiddo who doesn't sleep either. It is brutal for him and for me. Good luck! I stumbled onto your blog today and I am adding it to my regular reading list!

    Martianne said...

    Thanks all, for you comments. Miranda, take heart. I know how brutal it can be, but it does wax and wane, I find. Just enough to keep one sane. :)


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