Monday, August 27, 2012

Donna, and the Terrible, Horrible, No Good, Very Bad Day

The start of week three of vacation.  I have been known to say that Autism is poopy.  This would be an understatement today.  Today I was in the ring and got knocked out.  No doubt about it.

It started off fine.  RJC is still a bit swollen from her wisdom teeth surgery but she is in no pain - has not even needed Motrin.  I was working from home and I took a break in order to entertain her.  When she gets bored, trouble follows.  We went for lunch and got her nail polish changed to a beautiful bright red.  She was quite happy, though doing more self-talk than usual and louder than usual.

When we came home I went back to work and she was playing on her computer.  Then it started.  The screaming.  Not just a few screams here or there.  It was turning into a scream fest where one screech was louder than the next.  I went into her room to check on her and talked her down.  A few minutes later it starts again.  This time it sounds like an animal dying.  I check in on her and she loses it.  She is pinching and scratching me but even worse she is hitting her cheeks.  Now this concerns me.  I remind her, "No hitting!" and she takes off.  She's yelling full force then throws her body into our wall and goes right through it, taking down our doorbell with her.  I have lost track of how many walls she has destroyed but last time we fixed a bunch of these holes it cost us over a thousand dollars.  She's in a full frenzy now and goes right to my cell phone and throws it across the room.  I quickly realize the next possible target is my laptop so I take care of that immediately and put it away while keeping an eye out for anything else that may go flying.  All the while she is screaming at the top of her lungs.  She finally asks for a washcloth which is usually one of the ways she calms herself and I take this as a good sign.  I wet the washcloth and hand it to her and she whips it at me full force.  Ok, try again.  This time I am wiping her face gently and she is pinching me.  We are not in a good space and in truth, my heart is pounding and I am doing my own self talk, "It's not her fault.  It's not her fault.  It's not her fault."  I go for the Ativan which she takes willingly and that seems to stop her screaming pattern since she needs to swallow.  Eventually, she winds down and asks to "lie down on the couch with mommy."

I was definitely not in any mood to snuggle.  I was angry.  What could I do though?  She was calming down and I wanted to encourage that so we went to hang out on the couch together.  She put her head on my lap and I read the paper.  I was still pretty angry.  She was just hanging out on the couch when she started.  "I'm sorry mommy."  Really?  I was not ready to hear this.  I was angry and my hand hurt where she pinched and scratched me.  But what could I do?  It didn't matter how I felt.  I rubbed her forehead gently.  As we sat like that I could feel myself feeling so sorry for her.  She just has no "off" button. 

Here it is, hours later, and it still bothers me.  This is where my fear of the future rears its ugly head.  If she were to do this in a group home, what would happen?  Would they call the police?  A restraint?  Would somebody lose their patience and hurt her, be it by accident or out of anger?  How will she hold a steady job?  Participate in a day program?  These are the issues that keep me up at night.  Almost every night lately, in fact.

I am older and more tired than I was just a few years ago.  Yet somehow I need to make it all come together and work this out for my girl.  Over this year I'll be researching options for day programs and will need to remember to focus on the staff.  How do they train their staff?  What do they do if a client becomes aggressive?  What is the turnover rate of their staff?  I'll need to talk to parents whose children are already in these programs to hear the pros and cons of their experience.  I'm thinking this will be its own full-time job, but the most important one I will ever have.  And now...I'm going to try to go to sleep and I have no doubt...I will fail.

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