Monday, 05 March 2012

• How to Keep a Sinking Ship Above Water

  
  
  
  You're on a ship in the middle of no where.  You don't see any signs directing you where to go or indicating where you are.  Suddenly, you feel water leaking into your shoes.  You look down and realize a hole has sprung up in your ship.   Frantically, you try to plug the hole with your shirt.  It doesn't work.  It's too big.  You look around and can't see anything immediately available to plug the hole and the water is coming in faster and faster.  It is becoming more and more apparent that you are going to sink if you don't figure out something fast.  So you spend some time examining the space around you and the things inside the ship.  You realize there are manuals with directions on how to plug holes in a ship, but you don't know very much about ship holes or ship lingo and you feel lost trying to read the literature and get acclimated as fast as you can. 

  Finally, you find something that might be helpful.  You figure out how to plug the hole, but its not a permanent fix.  You've spared yourself some time to sit and think now that you have dealt with the hole for a little while.  You start realize things aren't how they are supposed to be.  Why did that hole spring up?  What does it mean?  Is my ship falling apart?  Before you have time to answer these questions, another hole forms and water comes gushing in this time.  Its a different kind of hole so again you check the manuals and find a temporary fix, but it isn't very good and the water is still coming in now. 

  You start to understand that something is definitely wrong so you begin looking for answers.  You discover that your ship is indeed having trouble staying afloat, but none of the manuals can tell you why or how to permanently fix it.  So you keep looking for answers.  You want your ship to stay above water.  Finally, you get some help from passerby.  They can't give you a lift or any directions, but they do know how to somewhat plug one of your holes.  By the time they pass on, you realize 3 more have sprung up.  You start to feel helpless.  Every time you fix a hole another one pops up.  You keep trying to find your way to shore, but the holes are very distracting.  You have to continue to do your best to keep them sealed, but it seems like the odds are against you. 

  This is how I feel sometimes.  I feel like I woke up one day and found out I was pregnant.  Before I knew it I was a mom.  I was only 20 years old at that time.   Sometimes I didn't know how I even got there, but there I was- a mommy.  I had help from others, but ultimately it was up to me to find a path for my family and I. 

  Then one day, things started happening that didn't feel right.  I would try to fix them, or work on them, but it just wasn't adding up.  More and more holes were popping up.  I could tell things were not progressing normally.  Until one day, at my daughter's daycare orientation, it was like all the water started rushing in.  I knew something was very very off.  Over the summer, all of the children had progressed.  They all were playing with one another.  They learned so many new words.  They were pointing and laughing and trying to throw balls to one another.  And then there was D, who hadn't progressed at all.
  
  In that moment, I felt very sick to my stomach.  My husband could see in my eyes that something was not right.  I started tearing up and had to excuse myself.  I ran outside and called my mom.  I don't know why I said it, but I said, "Mom, she has autism.  I know it.  She does." And I cried my eyes out. 
  
  From that moment on I have been repairing holes.  The goal is that someday my ship will be able to float on its own and find its way to a comfortable place to call their own.  The problem is that sometimes, you think you've fixed a hole or you mistakenly believe that the holes are done popping up only to find an old hole leaking again or a whole new set on the other side of your ship.  When my daughter was first diagnosed I thought, "Okay, here is my set of problems that I need to address... D has problems X,Y and Z but not A,B and C."  Only to discover that, yes, new problems will always arise so you better be solving the old ones as quickly as possible. 

  It really does feel like the odds are against me some days.  For the past week D's attention span has been diminished.  She wasn't stimming at all for practically a month and randomly started a new stim today.  I wasn't actively trying to stop her or anything, I just thought it was a good sign she had stopped.  Only to find she hasn't (duh).  She also, suddenly became very rigid in her play and will scream at the top of her lungs if you try to change something she is rigid about. Extremely loud screaming at even the slightest agitation is also a new problem. New problems, new problems.  *sigh* 

  I want this ship to be a ship that can hold its own someday.  I really hope I can become a very skilled handyman, a learned manual reader and a student capable of taking information from the passerby who have more knowledge than me.  It seems I'll be repairing holes for quite a while into the future.  Wish me luck on my journey!  I wish you luck on yours.

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