Battle Fatigue

I keep writing and rewriting this first paragraph.

I need to write.  It’s been a while.

I need to share.  There’s been a lot.

But I’m really tired.

Not the “Wow, I could go for a nap, tired.”  Though, there’s that too.

But the kind of tired that only parents of children with special needs know.

I call it battle fatigue.  Not out of any disrespect for our military friends.  But because I can’t liken it to anything else.

Over the past month we have watched out child practically shut down and deteriorate before our eyes.  It started with a long winter break, as setbacks often do, and spiraled into “scary crisis” during the first two weeks of school.

Perhaps it was complicated by the change in Peter’s school environment.   Relatively minor, we thought, but enough to absolutely knock us all on our backs.

In the general education class he began to act out.  Climbing on desks, screaming, crying.  Biting.  Hitting.  Running.

His team began adding back supports, and called an emergency IEP meeting.  He moved back to the self-contained classroom.  Even in that classroom full-time he continued to deteriorate.  Days of nothing but crying and screaming…and running.  Did I mention the running?

Meanwhile things at home were taking a similar turn.  He was inaccessible.  Shut down.  Extremely anxious.

Since finding out that we are losing his  insurance I’ve tried to find a giant pot of money so that we don’t have further disruptions in his routine.  I spent my days fighting the Autism.  Trying to exorcise the giant intruder from his little body.

I spent my nights collecting letters from the community and preparing a request for emergency assistance to the state, working with his therapy team to trouble shoot, and when I slept – fighting terrifyingly graphic nightmares.

It’s like waiting for a fever to break.  When your child is “cycling”.  You know that it will loosen its grasp, at least that it always has before, but you don’t know when or how much damage will be done in the meantime.

I don’t know what it’s like to be a parent to a child without Autism.

It’s just different.

It’s horrible.  It’s exhausting.

It’s a war.  A series of battles.  Except you’re always losing.

You can never do enough to defeat it.  You can only hope to keep it at bay for a while – to offer some respite to the precious child you love more than life itself.

You can write letters and blogs and make phone calls and pay thousands of dollars for therapy, and your work may help you win the battle, but you can be absolutely certain that there will be another…and another…

I wish I could find the presence of mind to really write about what the past month has been like.  What it’s been like for Gus and I, for our parents, for EB’s teachers, therapists and friends.  But I’m too tired.

The worst part is, we’ll never know how hard it’s been for our child.  Because he can’t tell us.

The only thing worse than fighting a never-ending series of battles for your child, is watching your child fighting those same battles, only without the solace of being able to help ease his pain.