Sleep

Day 27:  Sleep   

I have been avoiding this topic, not really wanting to go here.  But with just 4 days left, well, if I’m being honest, this topic deserves a post.  It is what it is.

My kids were never good nappers.  Ever.  While my sister’s kids would sleep for 3 or 4 hours at a whack, my kids would get a quick 50 minutes under their belt and wake up full of energy.  “What are you putting in that bottle?” I would ask jealously.  But although their napping schedule was less than optimal, their sleep schedules were always great.  They all went to bed easily (ok, maybe that’s a stretch referring to Emma who still to this day does not like to go to bed) but perhaps more importantly, they went to bed alone.  I was fairly militant when it came to sleeping in your own bed.  And then came Leukemia.

On that first day that Coleman was admitted to the hospital for Leukemia, we learned we would have to stay there for at least a month, maybe longer.  It seemed like an eternity.  In the beginning, Coleman slept in a crib while Billy or I slept in a chair that slid lengthwise into something sort of like a recliner.  But as the chemo wore on, Coleman became increasingly uncomfortable and the only way to console him was to ride him in the carriage or to hold him.  He slept many nights in that carriage, but even more nights he slept in our arms. And so the sleeping alone problem began.

When we returned home from Children’s the following month, Coleman was still quite sick:  he was still receiving chemo 3 days per week on an outpatient basis at the Jimmy Fund and he was as uncomfortable as ever.  Sleep was fleeting for him, Billy and I, and what we did get, we got together, Coleman nuzzled between us.  As his eating diminished and he slowly lost weight, I was terrified he would die in his sleep.  I needed him beside me to hear his breath, to make sure he was o.k.  And then when the feeding tube was finally inserted, I was constantly worried that he would pull it out overnight.  So for the next three years, we slept beside Coleman.   And when the final remnant of chemo left our lives with the removal of that feeding tube a year and half ago, we were out of excuses.  Except that now we had this little boy who only understood that sleep meant us laying down with him.  Please, save the lectures.  We are quite aware what we have created and what we need to do to fix this.  It will be two weeks of hell and then it will be over.  We are getting ready. 

Even the process before Coleman goes to sleep is tiresome and in need of an overhaul.  Stocked with OCD requirements, there is a full regiment that needs to be completed before he will even lie down.  The craziest of these is – are you ready for this insanity – Coleman stands in the girls room at one side of the house as the girls and I run all the way down the hall to my bedroom at the other side of the house, waving our hands and laughing, and then run back, and pretend we are going to tickle Coleman.  He stands there completely excited and laughing hilariously as if this was the first time we have ever done it.  We have done this every single night for months.  Even our fabulous neighbors must wonder about our mental competence as they see through the hall windows us running down the hall every night waving our arms.  This foolishness started out as a game – we did this one night as Coleman stood at the girls room doorway wondering what we were doing as we ran down the hall, only to hilariously laugh when we turned around and ran back, pretending to get him.  Oh, he loved it and his laugh is so genuine, so deep from the belly and contagious.  And I don’t even remember, but he probably had had a bad day, and we were relieved to see him laugh.  So we did it again.  And the next night when he asked, we did it again, all of giddy, laughing repeated and we loved it.  And, well, that is the problem with children like Coleman.  You have to be very careful with what you repeat, however much you all love it.  Because it takes almost no time at all for that little activity to become compulsive for Coleman, for him to need in order to move on with his night.  And we weren't that careful with this one, and now it’s just part of the routine.  I’m betting some of you are questioning your own judgment in allowing your kids to sleep over here, certain that I have completely lost my marbles. 

As for his actual sleep, Coleman does not fall asleep with ease.  It takes him about 30-40 minutes to fully unwind, to quiet all the thoughts that are racing through his mind.   As soon as he lies down, he starts talking.  He can’t control this – he is neither trying to be fresh nor trying to avoid sleep.  It is the only way he unwinds.   He goes through all kinds of talk, ramblings of things that happened that day, things that may have happened months ago but that he is thinking about now, words and phrases that he just likes to say, and of course, scripts from his shows.  Some nights, he literally repeats an entire episode.  Through all of this, I am lying beside him silently.  I don’t say anything except the occasional, “Coley it’s sleep time.  No more talking.  Go to sleep” which is ridiculous because he doesn’t even hear me.  He is in his own zone, and I know he just needs to say it all, get it all out of his head, before he will stop.  Sometimes he stops for a minute, and I think, ah, finally, but in fact, he’s just silently going through this part of the story in his head, and then he suddenly  yells out loudly “WHAT?  YOU SEEE A CLUE?? WHERE? RIGHT THERE? OH GOOD WE FOUND THE SECOND CLUE!”….I groan, knowing we still have a third clue to get through before he will finish.   It’s not always Blue’s Clues, and it’s not always a full show, but it’s always at least a half hour of talking, until he just stops.  I think how his little mind must work – how hard it must be to have all these words and images banging around inside his head, how he simply can’t stop until he gets them all out, and only then is his mind finally clear.  It must be so peaceful for him then, that short interval of time between the end of his words and the onset of sleep, a peace that is impossible for him to find during the day.  He sleeps very soundly then, all night.  And in the morning when he wakes it’s like the power is turned back on, and all the familiar words, phrases, scripts immediately start again.  Along with these, of course, come the requests  “Time to wake up? Time for juice? I’m hungry!”  

So now it’s out there, this craziness that we call Going to Sleep.  It’s not as bad as it likely sounds.  We are quite used to this routine, and it’s not necessarily always unenjoyable.  I know that there are plenty of children on the Spectrum that have sleep issues – including trouble going to bed, trouble sleeping through the night, and sleep walking.  I had a friend whose brother would wake in the middle of the night and go outside.  For a year, his mom had to pull the couch in front of the door and sleep there to prevent him from going out.  So, while our sleep regimen is hardly ordinary, it’s not as troublesome as it could be.  Still, we are fully aware of the need to change the parts that we can change.  Coleman will learn to sleep on his own, that I am sure of.  It will not be an easy change, but it will happen.  And then I will listen quietly from my bedroom as he finishes his nightly scripts, and his mind reaches the peace it yearns for.  And then we will all sleep.