This is going to be brief post.  Both girls have been sick, first stomach bug and now upper respiratory.  I've not managed to avoid getting mild forms and its been a long week.

Safi had an outstanding week this week.  She was class helper, is excited about two new students in class, and she racked up a ton of points for her class on Friday's Advanced Reader Pajama day.  She lost her second front tooth, though not without drama....Emily's husband Josh whipped a $20 bill out of his wallet and had her look up and yanked it out, sort of.  She started to wince and he lost his grip so it was dangling by a thread.  She cried, then went to over by herself and pulled it out...then asked for the money.  I told Josh no way because she didn't keep her end of the deal and let him pull it.  She was ok with that and the tooth fairy made a visit to dad's house.

Nixi had an interesting week.  She was "stable enough", which includes periods of mania where she loves everything, everything is fascinating and amazing, and she literally dances through her day...but the psychosis never leaves and the slightest thing can tip the scales and send her to the "less than stable enough" side.  That's our "normal", of note this week was that she was exceptionally confused and disorganized about time, place, sequences of events, etc.  She asked that dad have a calendar and a schedule at his house.  This week I'll be going on a brief trip and Heather, our Behaviorist, will go to Mike's house and try to help him essentially recreate what we have at home.

Both girls continue to struggle with the transition from dad's to home.  Mike has been taking them to buy a toy every weekend so that they'll have toys at his house.  The problem with this is twofold.  First, they want to bring the toy back to my house.  Second, its exactly why we started Christmakkuh in the first place, the girls love to get new things but they can't handle the overstimulation of it so it has to be doled out in small bits.  Well, this weekend Safi finally cracked and had a meltdown with dad and sister at Target because she had already gotten a doll at Big Lots but then wanted another toy when they went to Target to get Nixi something.  Too many choices.  Big Lots is overwhelming enough and Safi ALWAYS has buyers remorse.  So by the time they got to Target it was doomed mission.  But Nixi got her toy and I assume it wasn't too bad because I wasn't told otherwise.  When the girls got home Nixi was really clearly visually hallucinating.  she kept tilting her head and half closing her eyes when she spoke to me.  I asked her what she was seeing, "Bad guys, they want to eat me."  So, in preparation for my upcoming trip Monday-Wednesday, the change in routine because those are extra days with dad, and the week being different because of no school...I increased her Risperdal again.  It was the right thing to do, to try to increase it to help her maintain "stable enough", but its disturbing how easy its becoming for me to do it.  I used to be in absolute agony over increases.  I'd do them in small increments, terrified of side effects.  Last night I increased by a full tablet again.  That's okay, its what I'm supposed to do by prescription.  But, man, it wasn't a hard call and that's scary.  At the same time, I think its part of acceptance.  Acceptance that this is what it is, this is what our life will be, we'll deal with any negative repercussions when/if they occur, and she just needs to be okay.  So, she is currently taking 1.50mg of Risperdal and I imagine I'll keep her at that dose for the remainder of the holiday season unless we need to increase again.  I will say this, "stable enough" was the goal and for the most part we have that.  This increase was more prophylactic than anything else, as is common practice when a potentially exciting or anxiety provoking event is going to occur for someone with psychosis.  So, maybe this is me living what I said in a previous blog...accepting and just rolling with it.  I hope so.  Because I've not checked out or gone on auto pilot, I'm still here...thinking, researching, reading...but I'm also just trying to live.  Its the only thing that's fair to the girls who know no different.  I can have pain, guilt, grief, but that shit is my own...they don't own that and I hope that I can keep myself together enough that they never will.

So, this Thanksgiving season I am thankful for many things.  I am thankful for friends, family...both blood and chosen, teachers who care about my kids and me, doctors who are not only infinitely wise and gifted but also caring and empathic, our many critters who love us onconditionally and keep us grounded, this blog that helps me find my center each and every week, anitpsychotics and antocholinergics, SSRI's, and corned beef.  Yep, you read that right.  Nixi and I don't care for turkey and Safi is on a quesadilla kick so this year we're giving the turkey the bird!  We're going to eat what we like....corned beef, new potatoes, carrots, and cabbage!  Nixi was beside herself with joy, Safi said "I don't eat corned beef, either", and Emily is going to give me her turkey carcass for my turkey soup.  Life is good.  May you all have a wonderful Thanksgiving filled with the food of your choice and much peace, love, and laughter.

Sarah

Ying and Yang...shadow cannot exist without light.

Parent/Teacher conferences were this week and Safi is doing spectacular.  She is above where she should be in most areas and her abstract thinking inspired awe in me and her teacher.  For a child her age her abstract thinking is quite good, a kid with autism it is tremendous.  Academically, she is doing wonderfully.  Socially she is a work in progress.  She continues to struggle with waiting her turn, not pointing out the faults in the logic of others (teacher, included), and coping with disappointment.  Those are long term skills to work on, so there were no shockers at the meeting.  On a whole, her light shines bright.  Unfortunately, due to having no school on Veteran's Day  and early release the rest of the week because of parent teacher conferences....the shadow hit us hard midweek.  

On Wednesdays Safi go to speech therapy at school.  She loves it.  She gets to hang out with kids in other classes and grades and loves her speech teacher.  That said, it pulls her out of class and she is bound to miss some cool things.  They have been creating shapes with gumdrops and toothpicks, they then tell you how many vertices there are, etc.  That day when Safi got back to class she wanted to take an Advanced Reader test.  She did, but then missed learning how to create a rectangle using 4 gumdrops and three toothpicks.  When I arrived to pick her up she was in class going through a bunch of papers she was supposed to put in her backpack.  When she finally had them assembled to her satisfaction and she came out of class with the gumdrops and toothpicks in hand I could tell she was going to lose it.  Teacher told her that mom would help her figure out the secret at home (breaking one toothpick in the middle to make the two shorter sides of the rectangle).  I could tell that Safi needed to complete this task literally at school so I got down on my knees and began to help her problem solve.  She was already extremely emotional and easily frustrated.  I had to move her on.  She was crying as we walked to the car and she snapped at Logan not to look at her.  Once we got in the car I asked her to assemble the rectangle, and she did.  Then I checked her lunch and she had eaten hardly anything.  When the kids eat at least half of their lunch they get a small candy on the way to the park.  Safi wasn't going to get a candy, and that was the last straw.  She started getting louder and louder and I told her that if she could not calm down she would not be going to the park.  We rolled up to the park and I had Logan get out of the car and meet Emily and the other kids.  Safi was still freaking out about not getting a candy and I told her she had one last chance to calm down or no park.  All she heard was no park and KABOOM!!!  She began throwing her body back and forth in her seat, a la 3 yr old Safi, and had completely lost it.  I locked the door and pulled out of the lot to go home.  She got up out of her seat and grabbed me.  I pulled over and had the genius idea to tell her something that I had read other parents telling their children from my parent support group, "If you're going to take a swing at me, go for it, and know that it will be the last swing you ever take at me."  Yep.  I said that to a concrete thinking, Classically Autistic kid.  Bets on what happen next?!  You guessed it, she balled up her first, reeled her arm back, and POW!!!  She clocked me in the face.  I was stunned then even more stunned that I was stunned at all given the fact that I had, for all intents and purposes, just given her a direct order to hit me.  She was stunned, too.  And she sat.  She sat for the rest of the ride home.  She walked herself to the bedroom and once the door was closed proceeded to scream at the top of her lungs for a solid 20 minutes or so.  She eventually got it together and I showed her a list of the reasons why she was not given a candy in the car and why she was not allowed to go to the park.  She was calm enough to appreciate the visual aid and a half an hour later when we went to pick up her sister from school she spontaneously said, "Mom, I'm sorry I hurt you and said mean things to you."  She is a remarkable kid.  No Applied Behavioral Analysis taught her to feel sorrow at the thought of hurting someone she cares about.  No Behavioral Interventionist gave her a candy for apologizing to people.  Safi apologizes from the heart because she feels regret, she feels shame, she feels sorrow.  Safi feels.  All people in the spectrum feel, Theory of Mind deficit or not, they feel.  We go to these great lengths in early intervention to create these scripted, rote responses to human emotions and situations when what we really should be focusing on is supporting our loved ones on the spectrum's inner world and experience.  If given the opportunity to frankly be told how and what hurts others without providing the solution, they'll figure it out.  It may be clumsy and untimely, but it will be real.  That's what really matters.

Nixi had an okay week.  She's "stable enough" and that's that.  Again, the transition back from dad's on the weekend ends with a Sunday horror fest.  But here's the beauty of it.  Nixi lost it completely at Emily's house where we try to do Sunday family dinners when we can.  After we left Em texted me that her son Logan had just said, "Having Nixi, Safi, and Sarah is really nice."  We're a family pieced together by love and shared experiences....experiences that we have gone through together.  We are lucky.  Luckier than most.  Psychotic as a hell or not, Nixi is a tremendously lucky kid.  We've got a crew that always has our backs and doesn't bat an eye because we're family and that's what family does.  We are all so used to each other and all of our idiosyncrasies that they just melt away and only the great stuff...the laughs and the love...are remembered at the end of the day.  Truly awesome.

Sarah

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