Josiah's Journey

An extra pair of hands is a huge blessing when caring for a child with special needs.  There are many reasons for this.  For one, the long, sleepless nights take a toll after a while.  If sleep deprivation was ever used as a torture tactic, if anyone ever forbade me to sleep until I told them what they wanted to know, I'd spill my guts almost immediately.  I'm one of those people who thrives on a full 8 hours a night.  Thats why I have always been grateful that our children all slept through the night from a very young age.  Even Josiah.

But then something changed.   Eventually, Josiah just didn't need much sleep anymore.  I think it started somewhere around age 3.  He would be in bed, asleep around 8 or 8:30 at night.  By 1 am, he was wide awake, ready to start his happy day.  Sometimes he would not fall back to sleep until 4 or 5 in the morning.  If Josiah was awake, that meant either Rick or I had to be as well.   There were many long, sleepless nights for mom and dad. 

We tried our best to coax him to sleep.  We put him back to bed, repeatedly.  We sang to him.  We cuddled him.  We held him.  We used a weighted blanket.  We tried music.  We tried lights on.  We tried lights off.  We tried door open.  We tried door closed.  We tried just about everything anyone ever suggested that worked for them.  Nothing ever really worked. 

Once morning came, we were exhausted.  We didn't have the luxury of his youthful energy level.  Josiah however, was usually rearing and ready to go.  He could go for days on end with very little sleep.  The only way to survive this, was to tag team.  We would take turns staying up with him.  Some times we would switch half way through the night.  Some times we would switch nights.  One night Rick would sleep all night, the next night I would.  We figured eventually Josiah would crater.  Eventually it would catch up with him and he would crash.  Never really happened.

Fortunately, we stumbled upon a miracle.  I'm not sure where we heard about it. I don't know who told us about it.  I'm sure I would call them up and thank them profusely were I to remember.  I have not been able to do that.  I have however,  been able to share their amazing secret with others.  It has helped so many.  It is a harmless, inexpensive supplement, given just before bedtime.  It is called Melatonin. It helps insomniacs.  It helps shiftworkers who switch shifts and sleep schedules.  It helps blind children develop patterns of night and day.   It helps children with developmental delays who typically have sleep problems.  It comes in the form of a small white pill.  We crush it and disguise it in ice cream.  Josiah gets it every night. 

At first it worked really well.  We went for months with restful, peaceful, wonderful nights.  Then, eventually, it didn't.  No problem.  We figured, if a little helped a little, then a lot would help alot.  There were nights Josiah would get 3 or 4 of them, crushed in his ice cream.  If he awoke a few hours later, he got a couple more.  We would puree the entire bottle and concoct a Melatonin smoothie, if we thought it would work.  

When Josiah went to the residential treatment center, his sleep cycle became much more regulated.  He always went to bed at the same time.  He woke bright and early and on schedule.  He had long, busy days.  By night time, he would crawl up in his bed, put his little hands behind his head, close his eyes and go to sleep.  With NO melatonin.  I actually saw it once with my very own eyes.  Otherwise I would never have believed it.  The kid did this for months.  We were astounded.  We were quite pleased.

Josiah slept very well after he was discharged and lived at home again with us.  He crawled up in his bed, closed his little eyes and dozed off to sleep.  For about 2 weeks.  He became ill right after that.  He was up at night with bodily fluids projecting from both ends of his body.  For 21 nights. And days.  We were up too.  It was a regular party.  Lots of laundry.  Lots of carpet cleaning.  Lots of disinfecting.  All night long.  That was in February.

It's April.  He's back on Melantonin.  We're actually trying another sleep aid.  In addition to the Melatonin.   We figure it has to work eventually.  We think.  We hope.  We pray.  For now, Rick and I are very grateful to have each other.  And I am very grateful to not be teaching anymore.  I can always go back to sleep after I get the kids off to school.  I wonder how single parents raising a special needs child cope.   I wonder when they get to sleep. 

If you know someone in a hospital, bring them a fleece blanket.  If you know a single parent raising a special needs child, give them the gift of a few hours sleep.  Watch their child while they rest.

Oh, and buy them a bottle of Melatonin.