Behavior

Oh, isn't it fun as a parent to deal with behavior issues and temper tantrums?!  All kids deal with this in some way, and have tantrums of some kind.  We, as parents have to navigate the best ways to guide our kids through them, and work them out...without pulling all our hair out...can I get an Amen?

You've probably all done this at some point...you're out somewhere and you see a child absolutely LOOSE it...you mutter something like, "If that were my child, they wouldn't act like that, or their parents need to let that kid have it."  I would urge you to really think before you judge, and make assumptions the next time you experience something like this.  Yes, it could be that the child doesn't have good discipline systems in place, and gets away with too much, but maybe that child struggles with their emotions and behavior, has extreme anxiety, OCD, and is struggling with everyday change of life that you and I can control, and move beyond.  Maybe that child has PWS.  Or autism.  Or another genetic disorder.  Or an intellectual disability.  Or an awful home life.  

Individuals with PWS tend to have behavioral struggles, and have meltdowns or temper tantrums. Honestly, this was something every doctor continued to highlight, and fixate on...besides the extreme hunger. Does it scare me?  Yes.  Were there times when we wondered if we would ever be able to go out places with Ellie?  Yes.  Do I worry about this in regards to school?  Yes.  Did I look at my precious, innocent child and worry that one day she might be completely out of control and display these horrific behavior/temper outbursts?  Yes.  Am I working through all this, and finding peace?  Yes. 

All things individuals with PWS can struggle behaviorally with these things...OCD, repetition, stubbornness, and extreme anxiety (which can manifest itself in skin picking), emotional outbursts, rigid thinking.

A parent contributor for IPWSO so wonderfully stated, "All behavior can be seen as communication" (http://www.ipwso.org/#!understanding-behaviours/c23h5).  As a parent of a child who has PWS this is critical to understand.  Most behavior outbursts will come from a communication breakdown and in the case of PWS stem from one thing....anxiety, mainly stemming from food.  Think about your behavior when you become anxious.  You become frank, angry, uneasy, uptight, and often say things you don't mean to.  Learning what makes Ellie anxious will be so important for David and me, so that we can help her feel in control of it. Individuals with PWS tend to be concrete thinkers, and do well with visual interpretations.  They tend to not do well with spontaneous change.  It is hard for them to "switch gears" once they have in their mind what is supposed to happen.  

As we move forward on this journey, I am nervous how to navigate this thing called behavior...PWS does complicate things, but the way I see it, you have to find the positive in all this.  The positive is, I know my daughter.  I know that when I look in her eyes, there is a loving-kindness she possesses that is beautiful.  I know she is goofy, funny, witty, and simply has the best personality.  I know she is determined and strong, and surely opinionated like her daddy. I know when she looks at me she trusts me.  Trust is key to communication and behavior.