Wednesday, April 3, 2013

Sleep Issues and the X-Men

For us, one of the most frustrating things about Fragile X in the early years was sleep difficulties we had.   I say "we" because a child doesn't have sleep issues by themselves, do they?  Drew was no exception to this Fragile X rule.  We tried a white noise machine, which helped a little.  I would crank that baby up loud.  He liked music (still does), so I would put a headset on him.  I am talking about a Walkman with a TAPE, not a CD or MP3 player that you could set to repeat.  He'd doze off during his songs, but when the tape clicked off, he'd wake up crying again.  We used Melatonin, which also helped, but it seemed that he'd wake up after about four hours.  We tried the Willbarger Protocol (aka-brushing) before bed, strict routines, etc, all of which were nominally helpful.  What helped him the most was maturity.  As he got older, his sleep cycles seemed to figure themselves out and for the most part, he is now a good sleeper.  He still gets Melatonin at bedtime, or he will stay awake worrying about the next day.  And he is an early riser. 

Next X-Man with sleep issues:  Blake.  How is it that song goes, "Second verse, same as the first, a little bit louder and a little bit worse"?  That was Blake.  He'd get up forty-eleven times a night.  We'd put him to bed, he'd get right back up.  We'd rock him, give him sensory input, Melatonin, nothing seemed to help much for that one. He'd get up many times every night. 

Some nights, I'd be going back and forth between X-Men.  First would be Blake, who would cry and yell for me.  I'd put him back in bed, but by that point, he'd made so much noise that it woke his brother up. After several hours of this, a mama wants to cry.  After several hours of this, sometimes a mama DOES cry. 

Blake, too has gotten better over the years.  However, he still has difficulty sleeping sometimes.  Like Drew, he still gets Melatonin at bedtime.  And both boys get sensory input.  Eric pats their back when it's bedtime.  Actually, to someone else, it looks more like pounding on their back.  But they love it, and it is calming for them.  When Eric's not around for bedtime, I lay on top of them and give them "squeezin's"  as they call it. 

Every couple weeks, Blake will wake up at 2 or 3 in the morning.  He will be wide awake, but cheerful.  He'll say, "Mom?  Is it all clear?"  And I'll tell him no, that it is still nighttime and he has to wait until morning.  He'll get back in bed and try to sleep.  Five or seven minutes later, he'll get up and ask if it's morning yet.  Sometimes, Eric and I take turns putting him back to bed.  We sometimes try to redose with Melatonin in the middle of the night, but it is not very successful.  Usually what ends up happening is we just let him get up eventually.  He normally will play with his iPad or watch TV in the toyroom.  He doesn't get into trouble much at night, so we usually go back to bed and he lets us know if he needs something. 

It can be frustrating, but the thing that has helped me the most is that I know Blake can't actually help the fact that he's awake.  In fact, he'd probably rather be sleeping, too.  I try to be compassionate to him and remind myself that these nights are fewer and farther between.  What used to be a nightly occurance now only happens a couple times a month. 

So, if you have an X-Man of your own who can't sleep at night, there is some hope and light at the end of the tunnel.  And if it makes you feel better, there is probably another Fragile X mama or daddy who is up with their child, too.