Didn't do the blog last week.  I believe its the third blog I've missed in years, and I didn't do it because I was doing something for myself.  No shame in my game, self care is the order of the day and I'm finally starting to take it seriously.  I mention here and there the reoccurring theme that life, my life for certain, isn't a race of speed but rather a race of endurance.  Boy is that ever true these days.

Halloween went really well.  We all dressed up, trick or treated, had a blast.  But it was touch and go with Nix and Safi is starting to show some signs of wear.  

Nixi's illness, autism, and the divorce and the subsequent changes in routine and schedule are all taking their toll and Safi is bending under the pressure.  She's doing pretty well at school though she has even had a few weepy days there.  At home, with me, she's a little distant and when she's not distant she's got a massive attitude.  Now, here's the double edged sword of Safi being on Zoloft....she's handling things in a more neurotypical fashion that in an autistic fashion, and she's handling things in a more neurotypical fashion than in an autistic fashion.  Essentially, its wonderful that the Zoloft has served to decrease her anxiety to a point where she is able to be significantly less "autistically" inhibited.  The challenge for me at this point is learning to parent a child with a foot in both worlds.  Autism, I got covered.  Yes, its a spectrum and yes its always changing and evolving, but I "get" it and I know how to work with it.  The struggle right now is dealing with neurotypical behaviors in an autism friendly manner.  Just because Safi is behaving in many ways more neurotypically, that doesn't mean that she entirely understands the rules that go with that world.  For example, she's very big on testing me and pushing me to see what she can get away with.  Totally typical behavior for a 6 and a half year old.  The grey area; a neurotypical child gets a sense of when they've taken things too far or have pushed too hard from the verbal and nonverbal cues of others around them.  Unfortunately, Safi still doesn't pick up on those and is absolutely stunned and mortified when I have to eventually lay down the hammer.  Its difficult for me because I'm trying old strategies that worked in the pre-Zoloft days and they aren't working now so I'm trying to modify on the fly and I constantly feel like I'm failing miserably.  It ends with Safi, and more often than not Nixi, crying or seething with anger and me crying after they've gone to bed.  

Mike and I need to figure out how to make the transition from each other's homes to the other smoother because when they girls get back from dad's they are a horror.  Safi is full of attitude, Nixi is just completely on edge.  It takes very little to light that fuse and when its lit I have to just stand back and watch the explosion. avoid as much emotional and at times physical "shrapnel" as possible, and let it burn itself out.  It sucks.  It sucks for her, its sucks for Safi, it sucks for me.  Its hard and I'm not sure how to make it better short of coming up with a detailed visual schedule that is followed to a T, with absolutely no variation whatsoever, from house to house.  Its looking like that may need to happen.  Winging it or assuming that we are doing things the same simply because we lived in the same house with the girls for years isn't cutting it.

Clearly, we see things differently and we execute the routine, etc. differently and it shows.  Hopefully we can come together on that and figure it out because its rough after the weekend having to take one to two full days to get things back on track.  Knew this was going to be a rough transition and it certainly is.

Nixi is currently at 1.25mg of Risperdal.  She says that it helps with her thoughts (delusions), seeing things during the day (visual hallucinations), but does nothing for the people in her head (auditory hallucinations).  I have noted, as have her teachers, that she is coping better with limits and boundaries.  I haven't noted any troubling delusional content, though if I'm being honest, I don't ask anymore because she always has delusions.  If its causing her acute fear or paranoia, she understand that its a symptom and tells me her brain is bothering her.  If its not scary to her she doesn't acknowledge it as a symptom so there's not point in talking about it.  Though, just for the hell of it I just asked her where Frank is....without skipping a beat, "He's getting ready for his party tonight.  Its a party about me.  Its going to have a huge cake that looks like me and an ice sculpture because he misses me."  See, the psychosis is always there.  Nixi's inner world is always active and always morphing and evolving.  I suppose I've accepted that to some extent and an unless it causing her distress I don't need to grill her about it, though she talks quite openly about the parts she likes.  She is asking to go to UC Davis and the other day she asked if we could go to Costco so she could see the adults that we randomly ran into that one day from a local Board and Care.  She has been asking dad, myself, others if they have similar experiences as her and she is feeling alone.  I told her that it was a happy accident that we met those people but that there were other kids like her.  She was amazed.  She wants to meet them.  So, my goal is to get some of the kids from the online support group living in the Los Angeles area together for a meeting sometimes over winter break.  Granted, none of them are Nixi's age but who cares.  Nixi doesn't.  Hell, she's down with hanging out with a mid 20's fully psychotic dude, a 50'ish yr old psychotic lady, and a 50 some odd year old schizophrenic man.  These kids are between 9 -14 or so.  Hoping their families are interested and hoping I'm ready for this.  All of these kids have been hospitalized, in some cases on dozens of med trials, etc.  Those are roads I've chosen not to go down thus far and hope to never go down so I expect it will be rough to hear the stories.  I'm also concerned about the kids talking to Nixi about the hospital because if someone brings something up to her or even if she sees something on TV she can become preoccupied with the notion.  A lot of unknowns, but the benefit outweighs the risk and I'm going to try to get it together because she's telling me its what she needs and she knows herself better than anyone.  The one thing I trust with Nixi, and there's not much because this illness robs her often of her authenticity and genuineness, is that if she says she needs something she absolutely does.

So, that's where we are.  This week I'll try to schedule a trip down to L.A., a visit to UC Davis in December, and I need to start touring classrooms throughout the district for Nixi's 2013/2014 school year.  I'm hoping that Mike and I can figure out a schedule where once a month or every other weekend the girls spend the whole weekend with him because they did better after the one weekend when they stayed both nights.  I think it gave them more time to transition and enjoy being at dad's without feeling like there was this huge timer hanging over their heads about to go "ding"!  Early release all week for Safi, parent/teacher conferences, Veteran's Day, a seriously wonky week but we shall trudge on!!

Sarah