Monday, February 27, 2012


How do you discipline a kid who, up until this regression, has never done something she's not supposed to?  I honestly don't know if she knows there are rules in this world.  Up until the regression she smiled, flipped through her books, sat and played with toys, worked hard at therapy and achieved so many of our goals.  We encouraged her to get into stuff!  I remember one day before John left for work he opened one of our drawers in the kitchen and showed her how fun it would be to pull stuff out and make a mess.  A couple of times I put her in a time out for some small offense.  I came back to check on her and she had gotten out of the chair...all by herself.  Instead of telling her she needs to wait until I come and get her out of time out, I cheered for her.  Yea Emmy, you got out of that chair all by yourself...what a big girl!  The girl has never complained about not having a turn or been possesive over any toys.  She simply does not care about material things, other than her books.  As long as she's engaged with people, she's happy.  But this leads me to our current problem.  Since she's now unable to do things on her own, she wants somebody to engage her most of the time.  The only thing she can do independently is listen to music which she does A LOT when we're home and cooking, cleaning, living life.  So, I think she gets bored, restless, frustrated she can't just go over, sit down and look at her books.  It was not so long ago that she could.  Now, I need to help her get to the floor and hold the book.  I need to take both hands and help them flip.  Since I'm not available to assist her 24/7 AND she can't communicate with me she pretty much freaks out.  Since she's started regressing there has been a ton of head hitting, biting, flailing, screaming and otherwise uncontrollable fits.  Now, I'm used to a fit.  Ava was an expert fit thrower but Ava never hurt herself.  That's the part I have to watch carefully with Emmy.  And I'm in the dark about what the fit is about.  I would say maybe 10% of the time I know why she's upset.  The other 90 I'm guessing.  Does something hurt?  Is she feeling sick?  Did she bite her hand too hard or hit her head on something?  Or does she simply want me to change the song?  Maybe she's upset because she wants to sit on the potty...the list goes on.  I threw any and all discipline (like what I would have done with Ava) out the window.  I just wanted to make her happy.  And truthfully, when we found out she had Rett Syndrome and began to understand what she was going through my heart was breaking.  I started having a hard time just engaging her in simple floor play.  I was watching the skills disappear and it was just too hard to watch.  The situation just seemed (and still does) so cruel.  So I found myself, during these fits, crying right along with her.  I tried everything possible to sooth her.  I didn't tell her to stop biting or hitting.  If my body was failing me I'd probably bite and hit too.  But now we're all starting to get comfortable with her new limitations.  I'm so unbelievably thankful to have reached this point.  Losing the skills was the absolute worst for her and for us.  I am bracing myself for what may lie ahead but really the hard part (so far) was going from her having some independence to basically having none at all.  Even though she's more comfortable with what her body allows her to do she still has the uncontrollable fits.  I think improving communication is going to help A LOT and we're taking steps to help us be able to communicate with her better.  But that will take time.  We looked into helping with anxiety but the doctor didn't recommend medication.  He suggested behavioral therapy.  I know nothing about behavioral therapy and at the moment I'm too tired to start researching.  Any other Rett parents out there have suggestions?  Are there different types of behavioral therapy or is ABA the most commonly used with our girls?  And what the heck is ABA?  I've heard it described in broad terms but want to know what it would look like when you're trying to break self injuring behaviors.  I don't mind adding another therapy to the mix if it will calm my girly down.  So for now I just try and read her before the fit comes.  I try to communicate with her before she's too upset.  And if I'm not succesful and the fit is out of control I put the braces on her, surround her with pillows and let her flail.  I guess if she can't express herself with words then she needs to express herself through movement.  She needs to get out that frustration, anger and saddness.  We're just all thankful when it's over and we can move on with our day...until another one strikes!     

1 comment:

  1. You're climbing out of the darkness...I knew you would! I just knew it. But sadly, I don't have any suggestions for you. Leah still throws fits. She rarely hurts herself intentionally anymore (she used to, just like Em), but she still throws fits. We don't do ABA, but I guess I kind of do it on my own??? She has a lot of rules and expectations and I give her credit for when I know she can't control something, but a lot of times she can - and we both know it. Right now we're working on NO HITTING - "it's okay to be upset...but it's NOT okay to hurt others just because you're upset." It's a work in progress. Wish I could give Emmy a hug again! Speaking of which, hugs actually calm Leah down a ton. I'm not a hugger, so it took me awhile to catch on, but we fix a lot of problems with prolonged hugs nowadays.