Saturday, July 24, 2010

Blog the Third: My Greatest Fear.

Being a parent of special needs children brings to life a whole basketful of fears. (See? It's no wonder I write horror) Will they live "normal" lives someday? (Yes, I know - define "normal". That's for another blog at another time). How will they do in school?  Will they make friends?  Will kids harass them and take advantage of their disabilities?  Will they have the same opportunities as other "normal" kids, or will they always be marginalized, diminished by those who don't understand and don't care to?

And for the record: Abby and I are enormously blessed.  We've had to carry quite a load the last three years, but it's been bearable.  We see light (though very faint at times) at the end of this.  Our children's problems - though Zack's are more intense than Madison's - are certainly surmountable.  There are others who deal with much worse than what we do, and for this we are grateful, and our hearts ache for those who do. 

That having been said, I find myself fearing for my children's welfare far more than I ever expected to.  Being afraid for your kids is something ANY parent worth their salt deals with.  However, Abby and I grapple with things daily that we suspect other parents of "normal" kids don't.

In the face of all that, one of my greatest fears sounds mundane, almost even selfish.  It's this: that either or both of my children will stop sleeping their regular schedule.

For the most part we've been very lucky.  Children with disabilities falling within the Autism Spectrum of Disorders usually experience a great difficulty sleeping.  They either never go to bed, or they wake up way early.  We've been blessed in that, for the most part, our kids have slept normally.  Unfortunately, this has required an unbelievably anal, super-humanly rigid daily schedule that's often confining and is a daily reminder of how different our lives are from other folks (more on this later).

We've had our moments, though, and that scares me.  Badly.  I've worked with the ones who never sleep;  the ones who trash their rooms long past midnight to finally collapse and pass out - for only an hour or two - before they start all over again.  Their parents' lives diminish and shrink until they only exist to regulate their children's awake hours.  They lose themselves to their children's disability. 

Before Madison's diagnosis - before her weighted blanket, brushing protocols and joint compressions (later), daily doses of B12 - she often woke up around midnight and had to be coerced back into bed. A year ago, she started waking anywhere from 5-6 AM, and for almost half a year, I had to put her back to bed in the morning and make her sleep until six, sometimes 5-8 times in the space of an hour, literally carrying her, crying and thrashing, up the stairs and back into bed.

Zack has always slept well.  He's had his moments.  But, he's always reset. 

Then there was this morning.

I've now been up since 2 AM.  Now of course, I am "He Who Like A Crazy Man Gets Up Everyday at 3AM to Write", and if you saw my Facebook/twitter this morning, I DID get a fair amount of writing done.  


Around 4:30 Zack started talking and waking up, and by 5:30 he  was screeching at the top of his lungs, refusing to wear his diaper, almost hyperventilating and thrashing in his distress.  In the end, Abby had to lay in bed with him to get him to sleep even another hour. 

This bothers me.  Especially Abby having to sleep with him.  I'm not hinting at trouble between Abby and I, but the statistics of divorce among parents of special needs children is staggering.  Most of that comes from the very real fact that a child's special needs can become an unconscious wedge, separating two married couples from intimate soul-mates to tired, weary caregivers.   This scares me, that maybe Zack won't sleep without one of us there the whole night.

Also.  Sleep.  The precious.  Abby and I have always agreed we could handle just about anything except sleep deprivation.   Again, you ask: "Wait. Don't you like, sleep only two hours a night?"  

No.  I'm in bed almost every night around 9, so I can get at least five hours uninterrupted hours.  That leaves me functional (notice I didn't say 'refreshed').  Thinking of what would happen if our sleep went away REALLY scares me.  Work would become nothing but a mist I'd float through every day.  Forget grading papers.  I'd be lucky to tie my shoes in the morning.  What little life Abby and I have together would fade away, and writing? I don't think so.

Now to be fair, Zack's had some sickness this week, so that's probably part of it.  He'll probably reset. 

But again.  Autism is a partially a condition of rigid routine that is VERY resistant to change, and those who suffer from it are prone to becoming addicted to routines.  For example, we can't even let Zack spin around in circles or imitate animal noises because he then locks into an obsession he will only leave with a lot of coercion.  The fear that he may never recover his sleep schedule is a very, very real thing, so ANYTHING - croup, sickness, possible ear infection - carries an additional, weighted fear. 

Anyway.  Been up since 2, so I'm going to go now.  We've got an appointed with the pediatrician, to see what's what.