Rough, rough week.  Halloween, Schizophrenia, whatever it is, really putting Nixi through the wringer.  She's nearly back to where she was at this time last year in terms of fear of her symptoms.  The new addition is that since her symptoms are so full bodied and well developed there is less random panic and more specific terror.  It must be pointed out, because Emily will likely sock me in the arm if I don't, that the outwardly visible hard times for Nix are snapshots, brief outbursts in a full 24 hr day.  This is absolutely true.  Though, sadly, the psychosis that pushes her to the point of these obvious breaks is with her always.  So, lets just get down to it.  Monday she had a a massive meltdown after the park that was completely out of control for a good 10 minutes, ending in her pulverizing her knees by slamming them repeatedly into the bedroom door.

 Following that was a calming down period that I audio taped, still full of psychosis and visibly hallucinating more than I have ever seen her do.  I emailed the psychiatrist who is in Florida at a conference and he said to increase her Risperdal by .25mg every week up to a total of 3mg daily, if need be.  She was taking .75mg, and if you read this blog regularly or know me you know I increase in .125mg increments to try to avoid side effects.  By Wednesday I made the choice to increase her by the full tablet.  So, she is currently taking 1mg and this next Wednesday I'll be increasing her by another .25mg because I have seen absolutely no improvement.  We'll get her up to 1.25mg right before Halloween and then let it be for a week or so to see if things calm down after Halloween has passed.



The kicker, Nixi knows no different so she's okay for the most part.  Clearly, command hallucinations, visual hallucinations, voices, etc aren't pleasant, but for her they're "just a little worse" than what she's used to.  So, all of this scrambling, fear, heartbreak....mostly those of us around her who know nothing of her internal world.  Its like Safi and autism, she knows no different so she thinks we're kinda weird.  Truth be told, we are.  We're all weird, confusing, fractured human beings.  We may not all have a formal diagnosis, but we all have our struggles.  And for those of us who do know different, we cant fathom living with a daily illness or disability like these kids do.  That's what makes these kids absolutely amazing.  Its like sitting on your couch bitching about not having any ice cream in the fridge while simultaneously a kid in Morocco is super stoked because a tourist handed him a piece of flat bread.  Perspective is everything.

So, as I'm writing this I have realized that I am going about this all wrong.  For this month, and perhaps forever if I can contain myself,  I choose to change my perspective.  I will cry with and for my children when they struggle and tell me or show me their struggle.  But I WILL NOT randomly cry about their conditions or disabilities just because they have them.  Fuck that.  My kids complain about a lot of things, wanting an extra frozen Go Gurt, a happy meal, a toy....typical kid stuff.  They DO NOT complain about their limitations, struggles, or diagnoses.  They do not ask me why they have "X", they do not ask me why other kids they know do not.  They ask me for princess wigs for Halloween, to go to dance class, to play at the park with their friends.  They are kids.  Just kids.  Safi knows she has autism, Nixi now knows she has schizophrenia...yet neither of my kids uses these as excuses for ANYTHING, or as a way of referring to themselves at all.  They are Safia Dot Seifert and NixiRogue Hanks Seifert.  They know who they are and they are good with who they are.  Some day I hope you ladies read this...because today is the day that I promise you that I will see you.  I will see you as you see yourselves.  I will always support you and I will always be your researcher, advocate, sometimes clinician, nurse, therapeutic brainstormer and out of the box thinker....but only after I've just been your mom.  You are beautiful, smart, funny, loving girls that see your similarities with others far more often than you notice the differences and that's exactly as it should be. That is how you will achieve whatever you want to achieve.  You girls believe in yourselves and I'll believe in you and we'll make anything and everything happen.  I promise.

Mom

To everyone else, have a wonderful Halloween and maybe take a minute to look at your life and see if there isn't an area that could use a change in perspective.  May make all the difference in the world, I don't know that for sure but maybe we can all figure this out together even though our journeys are different.  Kind of feels like a giant sociological study based on the honor system.  Feel free to share any revelations or shifts in you perspective on my Facebook page!  Let's change our worlds, today...who knows, may change the world at large tomorrow!