Beginning of week....

Nixi insisted on having her picture taken because she looked "soooo beautiful"

Dance class, new student this week!  Nixi's friend Ava from early intervention!

Friday....

I'm tired, its been a long week, and it ended in a horrific crescendo of screaming and complete meltdowns this evening.  New toys from the consignment sale always spark a mini meltdown, add to that still transitioning to spending the whole Saturday at dad's, and Nixi being drained by the end of the week and you've got a recipe for one hell of a roof raising.  But we got through it, lasted about 15 hellish minutes...and life goes on.  They struggled this morning, too, but before bed was off the hook.  I'm thinking of giving Nix her meds at bedtime instead of an hour before.  I know that she can't reach peak state during waking hours and kids metabolize at such a faster rate, perhaps she reaching peak state in an hour or is just too tired by 7:30pm to not meltdown but lately its been getting worse.  Warning, disjointed and unedited post to follow because I don't care to read this after I'm done.

Safi had a decent week.  She struggled one day because she was called out for Occupational Therapy and missed science.  Once she got back to class she was trying to play catch up which meant that she was further out of sync with her peers and she just continued to go downhill thereafter.  When I got there to pick her up she was quietly finishing an assignment and when she turned to say hi to me her eyes were bright red, puffy.  It was so sad.  She is an advanced reader(AR) and the straw that broke the Safi's back was not being able to take more than one AR test that day.  Kids are only allowed to take one a day and Safi, of course, thinks that that's ridiculous if a kid can pass them and she got 100%.  Alas, that is not the rule.  So, she hounded the teacher until the teacher had to give her a consequence.  An all around miserable day for her.  Certainly doesn't help things that her sister is completely psychotic.   At any rate, she started the week strong and ended the same.  She's really doing wonderfully....now if we can just do something about the 16 yr old attitude and voice coming out of that tiny, 6 yr old mouth.....  Every bit my child, she is.  I shudder when I type that.

Nixi.  What's new with Nixi?  Not a whole lot.  She's psychotic...schizophrenic, even.  I waited until Wednesday to email the psychiatrist.  I couldn't even call him because I didn't want to have a dialogue about what was going on and I waited until Wednesday because I just couldn't handle it any sooner, frankly.  See, while totally out of her mind last week after giving up fighting her illness, Nixi was happy and peaceful.  She was enjoying her inner world.  She wasn't fearful, she wasn't anxious, she wasn't totally in our world...but that terrified me, not her.  And this is about her, right?  My role as this kid's mom is to support her.  I have never wanted to change her, lose the essence of her which has been her illness in some variation from the moment of her birth.  So what the fuck am I trying to do now?

Here's where I'm torn.  Untreated psychosis absolutely causes brain damage.  I would never at this point consider taking Nixi off of meds completely, but if the med isn't working its like giving her tic tacs laced with rat poison.  Essentially filling her full of toxic material for naught.  At the same time, I am unwilling to let go of the Risperdal because I feel like if I do there's nowhere to go but the scarier drugs...and even then there's really only two choices as far as antipsychotics go.  We are at a crossroads.  I remember coming to this crossroad with Safi right before she was three and her self injurious behavior was absolutely terrifying.  I said one day to her OT and speech therapist, "What if I don't do ABA?  What if I don't treat her?"  They said, "Then you'll love her and help her figure this world out the best you can, like you would any other child."  They were absolutely right.  That's when I told Bright Futures to piss off and requested the consult from a different company.  Best decision I ever made and my only regret was allowing people to make me feel like I would be doing my child a disservice by making that choice sooner.

So, medication.  The psychiatrist emailed me back that we should definitely increase the Risperdal and that we would need to consider changing meds at some point.  Ok, cool.  But sitting there Wednesday night staring at that bottle I couldn't shake the feeling of "leave well enough alone."  She was happy, peaceful even.  The only point of increasing the meds, for me, is to get her insight into her illness back.  But when she has insight into her illness it scares the hell out of her, as it should.  Increasing could bring the akathisia back, and that's just downright mean...but easily fixed by stopping the increase. And increasing with no changes in symptoms means its time to call it day on the Risperdal.  If we do that do we do a med "wash out"?  Or do we titrate her down, simultaneously adding the new med?  Is she going to become a zombie?  If we did a med "wash out" and she was no more or less psychotic than she was on the Risperdal, I can live with that and so can she...I think.  So hardcore.  I was paralyzed with the bottle in my hand, so I reached out to a trusted and gifted friend and fellow psychologist.  He said many things that made a tremendous amount of sense, but the most important point was that increasing her meds didn't commit me to doing anything further.  Doing the increase didn't mean that I had to change meds or do anything I'm not comfortable doing if the increase was ineffective. Basically, doing the increase had the chance of helping...small chance of harming but nothing that couldn't be undone quickly...and it meant absolutely nothing other than what it was.  Totally genius but a concept I hadn't considered.  I have been feeling like Rsiperdal was a sort of "gateway drug."  We've been chasing the wonderfulness that we saw those first two weeks she was on it, first two days if I'm being really honest, for five months now with varying degrees of success but never getting back to where we started.  So, tonight I'm saying it.  I'm calling it.  I'll keep her at the increased dose of .75mg for two weeks, after that, all bets are off.  I think I want to do a "wash out".  Maybe I need to see what that looks like.  Maybe that will give me a better idea of what the Risperdal really was doing, or not doing.  Then maybe I can make a more informed decision.  Maybe I just need to not poke the bear...if its happily hibernating...perhaps putting down the stick and just letting rest for awhile is wise.  When she's older she can be on some of these more disturbing meds...not now.  I'm not going to risk not only harming her body in the present, but killing the chance that these meds could work at a later date when we need them more than we do now by doing damage that can't be undone.  This is uncharted territory.  Later Wednesday night I was checking my email and saw a second email the psychiatrist had sent earlier in the day.  It read simply, "One day this should be written up---I've never seen anyone like her."

Dagger through the heart.  Nobody wants the kid that's unique, everybody wants the kid that's been seen a thousand times.  That's the kid they know what to do with.  We are screwed.  That said, I trust Nixi's psychiatrist completely and have absolutely nothing but wonderful things to say about him.  He is knowledgeable, caring, and an all around tremendous human being.  He is absolutely right.  From a psychiatric standpoint Nixi is fascinating and because I have been keeping documentation on her since literally birth she is the most thoroughly documented child schizophrenic in history.  Her case will be written up one day, just as one day this blog will be a book that will hopefully fund Utopia.  But not until the time is right.  She is a child, not a curiosity to be gawked at by the masses.  She's just a little girl, and she's my little girl.  Our story, our life is a fair price for a good start at my daughters' futures and the futures of the others that Utopia will shape and nurture....its just not a price I'm willing to pay just yet.

Sarah

Mon or Tues after school...its all becoming a blur at this point


Thursday after school....


JBF consignment sale score...karaoke machine!


Raddest kids EVER!

So, the girls' week....they both struggled.

Safi struggled at school with wanting to be called on all of the time...assuming this is due to only earning enough fuzzies for one coupon last week and trying to really work it for two this week.  She also had a massive battle with her friend, Sophia, that apparently was quite disruptive to class.  They were competing with each other and Safi can't hold her own with Sophia, she crumbles and cries or yells...so they weren't allowed to even look at each other for the rest of the day.  We talked about it and I reiterated to her that NOTHING at school is a competition, regardless of anyone else competing she is to ignore it and walk away or ask teacher to move her.  Its hard because Sophia and Safi are so close, the teacher saying it looked like "siblings", that Sophia knows what buttons to push on Safi and Safi just doesn't have the social or emotional coping to get through it without eventually crumbling and/or losing it.  And they are like siblings, they love each other...and simultaneously drive each other mad.  Her eyes were red that day from crying.  She's never been a competitive kid because we've never made things a competition, partially because kids learn competitiveness naturally so no need to introduce it and also because frankly Safi will lose most competitions.  That's why we're not doing sports, but rather dance.  She is motor dyspraxic.  Her motor planning is hugely lacking...she can walk, she's better than some, but she's not "age appropriate" and she is keenly aware of it and embarrassed and hurt by it.  Imagine your own body totally betraying you by not doing what you want it to do and what comes so easily for those around you.  Talk about frustrating and anxiety provoking.  Add to that competitiveness and its just a recipe for disaster.  So, we'll continue to work on it with the girls at the park and the teacher will work on it at school.

I have a new way of conceptualizing Nixi.  Like a functioning alcoholic, Nixi is a functioning schizophrenic.  Ill as hell but floating through the day as if she's fine and eventually getting so shitfaced by her psychosis that the ugly comes out.  She goes to school 4 days a week, the park 5 days a week, out to restaurants, movies, parties....all the while hiding this tremendous secret.  And I say hiding because she absolutely is intentionally hiding symptoms at this point.  My absolute worst fear.

So, came back from dad's more stable than last time but still sketchy.  By Monday she was totally gone.  She's been doing things like stopping up the sink due to command hallucinations and I know this to be true because she DOES NOT say anything told her to do it, she just cries and says "I don't know" and looks confused.  Monday she did again and became hysterical and I demanded she tell me what was going on in her brain.  Between sobs I got and ear full.....the people (because now they're people) in her head want to take her to their castle and that's a bad place, she likes the people in her head more than people in the real world and listens to them more.  I told her for the first time that she has schizophrenia and that I would not allow her brain to take her from me, from us, and she got even more upset saying "But I love my brain."  She was visibly hallucinating and it was just horrific.  Later that day totally disorganized and hallucinating; "My butt's going to start itching more"...Why?...."My brain".....How is your brain going to make your butt itch?....."My brain is in my head."......Yes, but how...."The puppies", as she walks away and her voice trails off into inaudible nonsense.  Minutes earlier she had pulled the arms off a doll and when I asked her why she said because she wanted to see what was inside.  I asked her what she thought might be inside....puppies.

Tuesday on her way to school she told how very excited she was to see her new friend, Gabriel R., "You'll meet him.  He's a new student in my class.  I'm going to ask him to play on the climbing thing with me at recess."  I ask her for more info...does he have the same teacher, do carpet time with you...yes.  Her class WAS getting a new boy that day and the teacher had talked about it the day before but Nixi told me that he was in her class already, etc.  So, after school I told her that I didn't see Gabriel and asked if she sees him or just hears him...hears him.  Is he nice?...."He wants to smash me."...how does he feel about the other kids?...."wants to smash them, too.".......does he like teacher Mel?...."yes".  All in a totally normal, calm, voice...just very matter of fact.  Great, she's naming these fucking voices.  Bad, many shades of bad.

Wednesday, a little manic, psychotic as hell in dance class.  During the routine practice just rubbing her body up and down the room length mirror and making faces to herself.  She engaged in the beginning of class but by the end she was gone.  Both girls enjoyed themselves, though, and there were a ton of new classmates so that was cool.

Thursday I pick her up from school and she goes from bubbly and happy to tearful telling me that she doesn't want to die and doesn't want Safi to die, she'd miss her mommy and daddy, etc.  Asked her where she got that from...Frank.  Fuck me.  Frank was the only voice with a name.  He's been around since the beginning of her full on active illness.  Lives in a rainbow castle, can be mean or nice, generally nice to her...has been a ally of sorts.  So, Frank told her that someone is going to kill her and her sister.  You'll hear it below as I audio taped the conversation...but I did something so stupid.  I asked her if Frank was being mean or nice and she said nice and I disagreed.  Dude, this guy is WARNING her, giving her a heads up...that's a hell of a lot more than I'M doing.  Of course she thinks he's nice.  Just so bad.

Friday morning she woke up literally from the moment her eyes opened psychotic and agitated.  Her knees are all bruised up from raging because I have a policy with her...calm gets cuddles, not crazy.  You scream and yell at me and spew venom...fine, get it out...scratch the itch....but I'm not cuddling you until you are calm because a)I'm not engaging in that unless it is a safety issue because I do NOT want symptoms of mental illness to become volitional behaviors, and b)she hurts me.  So, I shut the door to the bathroom that I was in and she proceeded to beat the hell out of it with her knees.  If she were an adult she likely would have broken the door.  Alas, she is 4 so she didn't.  Safi had to put headphones on and was crying...great start to her Friday.  Nonetheless, we got past it, we moved on, Safi got off to school, and Nixi ran errands with me.  And there was a lot to do as she was refusing to leave the house for anything other than school the whole week.  Once I get her out of the house for school I keep the momentum going so she can't back out of park, dance class, etc.  She had a lovely, psychotic day.

I got to go out Friday and the girls got to have dinner with dad and a slumber party with Heather.  They did wonderfully and have been good all weekend.  The usual, Safi sass and attitude after dad's and Nixi falling apart but nowhere near the le3vel of falling apart that happened two weeks ago.  So, progress.

I'm calling Nixi's psychiatrist on Monday to talk about getting an appointment.  We need to increase the Risperdal or give up and let go of that fantasy and move on to a different med.  I can win this battle against Nixi's brain and her illness only if she is fighting with me....I have lost my teammate.  I can't win against this illness by myself.  We need to get her on a medication that keeps her in the fight...or we're going to lose her.  Its as simple as that.

Sarah

The following videos were shot in the car on the ride home from Nixi's school...so, you wont see much and it can be difficult to hear but you'll get the idea.

Gabriel talk


Frank talk

Interesting week.  Safi started the week with this amazing cold that all of the kids around here are passing to each other.  While she didn't have a fever on Moday, I kept her home for social reasons.

Ok, so Safi has this sensory thing with mucus, snot, boogers, whatever you want to call them.  For a moment, if you will, indulge me.....pinch your own nose.  Immediately after, did you find yourself rubbing it or wiggling it back and forth to "re adjust" it and make it feel "right" again?  Ok, so magnify that by like 1,000 and you're close to what Safi feels when she has nasal discharge.  So, she sneezes and freezes.  Deer in headlights, snot running down her face..hand out to her side, paralyzed.  When she was very little, like 2-3 yrs old she used to actually attempt to stuff the snot back into her nose to make it feel "right" again.  While she doesn't do that now, she still panics.  Enter motor planning deficits.  Give her a tissue when you see her about to sneeze and she either holds its inches away, thereby defeating the purpose...or pushes it up against her nose creating a horrific snot shrapnel situation.  Graphic, yes, but necessary for you to understand why I kept her home.  She's had a few mini metldowns so far this year...lets not add booger girl to the mix.  So, we worked on blowing her nose.  And for the first time ever in her life, she did.  I held the tissue, she just had to blow....for a tiny bit of a sour gummy worm.  The concentration and determination on her face as she got ready, then freaked out and couldn't do it, then looked at the bag of chopped up candy bits, closed her eyes and blew...magic.  And if you know me you know mucus is a dry heave inducer for me.  But if she could choke back the fear and go for, the least I could do was not vomit on her...and we both were totally successful.  Next day at school, teacher helped her blow her nose twice and she blew her nose, appropriately, once herself!!!  SUPER WIN!!!!  She had a great week at school, and while her could remains in her chest as it always goes for Safi, she is feeling great and I am terribly proud of her.

Nixi had a good week.  Some command hallucinations, some delusions that were horribly confusing and then disappointing to sister, and disorganized thinking.  She's been hiding things.  The command hallucinations weren't harmful...write on couch, put something down sink, etc...but she's trying to hide them and that's not a good combo.  She also spent a good part of each day repetitively telling me how much she loves me...over..and over..and over....can't count how many times.  When she does this it is a tip off that her voices are telling her that I do not love her, am going to be mad at her, hate her, etc.  So, I suppose it makes sense that she has been hiding her symptoms more and more.  Its incredibly frustrating because, while we have rules and structure in this house....you mend what you break, you help instead of hinder...I don't yell at her about things.  I ask her about things.  I just say, "What happened?", or "Why did you do that?" in a non accusatory tone.  Again, just more evidence that the illness bare significantly more weight in her life than I do.  Nonetheless, I would say she is as stable as she ever is and we are at her "baseline" and that's a great thing.

Wednesday was Fair Day so no school.  We opted out of the fair in lieu of a library trip, park, and Mc'D's. Later, the girls had another wonderful dance class...this time with me on the other side of the door peaking in the window from time to time.  :)

The girls also spent their first pretty full day at dad's.  Mike picked them up at 7:45am on Saturday and brought them home at a quarter to 6PM.  They had a great time.  They went to Target and bought a new game, tooth brushes and things to keep at dad's, got icee's, went swimming, it was non stop fun...and new.  As all things new and super fun...we paid for it dearly after the girls came home.  They were good for their shows before bed but by the time we needed to do guinea pigs they were both yawning and exhausted.  Minor meltdown from Safi.....but Nixi was ready to implode, and implode she did.  She just became absolutely, totally, and completely floridly psychotic.  Not unlike after the circus, or another super fun event.  She was terrified to go to sleep, started saying that the game (Operation) that dad bought scared her, that the ghost Backyardigan's episode they watched scared her.  It was the perfect storm of changes, lots of excitement, and a game and show that feed into her often morbid hallucinations and delusional content.  It was a good 30 minute bender.  I explained to her that she absolutely MUST tell daddy when something is scaring her and she said she wanted to call him.  So, poor Mike got a phone call from a totally stark raving mad psychotic Nixi about all of the things that made her scared at his house.  I allowed her to make the call because she absolutely needs to talk to other people than just me about what's going on, because she's even sketchy about me sometimes.  After the phone call she screamed about rearranging all of the furniture in the room so that she could see me while I slept.  This is precisely why her bed is where it is in the room and why there is a toy organizer blocking her view of me...otherwise she will not sleep.  She will stare at me all night.  No sleep makes her psychosis worse.  It was just all around awful.  I gave her a second melatonin and just sat with my hand on her back until she fell asleep.

Later, Mike texted about how awful he felt because he thought she was having such a great time all day.  She was.  She had a wonderful time.  The greater the time, the worse the fall out afterwards...just like Safi.  But I told him, "You got 10 hours of wonderful and we only paid with 30 minutes of hell.  That's wonderful!"  And its true.  This is just the way it is.  We take the bad with the good and more often than not the good so significantly outweighs the really, really bad pits of hell bad.  So, I consider the weekend a complete win.  The girls and I took Saturday really mellow, hung out around the house.  They played exceptionally well together...so much so that I was able to mow the lawn with them inside playing together!  Nixi was extremely excited for dad to come to our house after tablet time to go for a swim.  Safi, dad, and Nix had a wonderful time playing together and slight meltdowns later.  All in all, for the first weekend of extended visits, etc...couldn't have gone better.  In fact, I'm delightfully shocked it went so well!!!

Next shocker, this coming weekend I will be going to Fresno to see a friend from school and I will be spending my first night away from a child(ren) in over 6 years...and I'm not freaked out!  Dad will take the girls on their usual Friday dinner date and then Heather will have a slumber party with the girls.  Dad will pick them up Saturday morning for the usual fancy donut run and then over to his place for the afternoon.  Its just crazy enough to work!  I'm completely stunned at how calm I feel about this.  Clearly, I am a phone call away and can be home in 45 min if need be, but I think it'll go great.  Weird and wonderful!

Sarah

While this video is essentially black, I would NEVER make Nixi sleep in the dark.  They sleep with a floor lamp on, this was just the end of the psychotic meltdown Saturday night and I put my iPhone on the floor so the camera was blocked.......


Another Risperdal hunger moment...this is just daily from here on out, I'm afraid...

Significantly better week this week all around.

I can't even tell you what coupons Safi earned in school because she didn't run out of class on Friday to tell me.  That is PERFECT!!  That means she is no longer preoccupied solely with the dreaded fuzzies and coupons!  Absolutely awesome!  Got another 100% on her spelling test and just had a really lovely week sharing her stuffed bunny, Marshmallow, for show and tell and eating lunch with teacher and a few other students.

Also, by Tuesday Safi was okay with dad's move, excited to help him, and excited about getting to move some of her things over there. Each morning she would wake up and say, "Its almost the day for dad to move to the cottage, I'm so exciting!"...like she does when a holiday is coming up.  She was a great helper with the move and she is just really doing a wonderful job of being flexible and understanding that "family" isn't defined by the roof you live under or even the blood in your veins.  We have tons of family, by birth and by the heart, and that never changes.

Nixi had an interesting week.  Her class still consists of 3 boys and herself.  Well, they got sick this week so she had a couple of short days.  That suited her just fine because she struggled with some of the symptoms that can only be described as dementia-like this week.  Like, being in the car driving to school and talking about going to school then stopping and asking, "Uh, mommy, where are we going?", or asking where her frozen yogurt was and needing to be reminded that it was in her hand, and a new one that stabbed through my heart..."Who's Nixi?"....you are, sweetie, you are.  ""Who?...Oh, yeah, right, me."  And she's not joking.  While remaining psychotic, she was much less hallucinatory but much more disorganized.  She forgets where she puts things, its just really dementia-like.  Seems to be the way it goes with her.  Its like when she was nearly two and the psychologists was assessing her for Autism.  He did a differential diagnosis between Childhood Disintegrative Disorder and Classic Autism because she has always had this sort of cognitive "swiss cheese brain".  Smart as a whip, confused as all get out.  I still don't know what that means or how that figures into her current diagnosis of schizophrenia.  It hasn't been this significant in awhile so I assume its somewhat stress related.  I'm back to researching and wondering if we shouldn't save up the money for a Niemann Pick Type C skin biopsy.  I don't have the desire to get into that here, but you can google it and you'll understand why I'm not elaborating here and why we haven't tested for it previously.  Her pediatrician thought it was pointless, I'm not so sure.

Regardless, moving day went swimmingly.  Both girls were great helpers and they love their new cottage apartment home at dad's.  That evening Emily and I took all of the kids for a mom/kid Dino Nite at the zoo.  It was hot, Nixi got her meds two hours late, it was a lot of little bodies for just Em and I to watch over....super fun, incredibly draining, and at the 3 hr mark it all started to go bad.  We split off from Em and the kids and started heading home.  At the gift shop, for the first time, Safi got something she really wanted regardless of what sister got.  Doesn't sound like a big deal but its huge.  Thank you, Zoloft.  And by the time we got to the car both girls were in a really good space and we were able to end the night wonderfully.  No meltdowns at the zoo, just having a hard time listening towards the end and Nxi was becoming increasingly symptomatic....read, psychotic.  Amazing to see what just two hours of medication delay can do.  Nonetheless, all of the kids had an absolute blast and that's all that matter...harried moms will always live to see another day!

Something extra special this week.  The girls' "Auntie Shae", a good friend of mine, found a flier for a special needs dance class in a neighboring city...Radiant Ruby's.  Its every Wednesday Sept. through December, its free, and its magical.  The girls absolutely loved it.  There was only one other kiddo in class so I got them to print me out some fliers to pass out...but the girls didn't care.  It was dance class, and extracurricular activity that they were doing and they felt incredibly special.  As I sat there watching them tears streamed down my face.  I was just so unbelievably proud of them and moved by their absolute joy.  Then I became acutely aware that I am totally one of those dance moms you see on TV.  It was horrible..."Safi, ankle all the way to the floor, push your legs like a butterfly."..."Girls, this is a class and do we act silly in school?".  Literally, if I hadn't quickly been able to step outside of myself and see what I was doing I very well could have been the killer of all things magical and joyful.  Luckily, I caught it pretty quickly and am hoping to spend next class on the other side of the door looking in through the glass...if Nixi will allow me.  Thank you, Auntie Shae!!!  Great looking out and your stock has soared with the little ones!  :)


So, that's where we be.  I will tell you this.  Today, Sunday, the girls went over to dad's to go swimming in his big pool and have a pizza party.  While I was loading up flotation devices, life vests, and foam noodles because the girls can't actually swim it hit me like a ton.....of fluffy cotton balls....you thought I was going to say bricks.  It hit me that Mike and I are doing the exact right thing and at the exact right time.  This time alone with the girls is going to give Mike a chance to do the parenting that is usually relegated to me by the girls.  And these breaks from the girls are going to make me a better mom because I won't be so "bankrupt" each day, as my psychiatrist likes to say.  I may eventually end up with enough rest in my bank to actually meet the needs of their withdrawals.  That is obscenely exciting and wonderful.  We truly ARE going to be better parents and there's no possible way that that could be anything but beneficial for the girls.  Wonderful feeling.

Sarah

Heavy, heavy week.  This is going to be a pretty disjointed entry because I have a lot to say but no energy or desire to make it flow....I really don't care at this point

I'll start with the good...the uber detailed plan for earning fuzzies has been a success.  Safi had a wonderful week at school, earned all of her fuzzies, and even got 100% on her first 1st grade spelling test!  While we don't make a big deal of tests and grades, in our house its more about the process than the result, the other kids were delighted to show their parents their tests.  I LOVE that Safi was all, "Oh, yeah, I got 100% and a two giant fuzzies" like it was an after thought.  So rad.  She earned two coupons....she gets to bring something for show and tell next week and she gets to eat lunch with the teacher in the classroom on one day, along with any other kids who picked that coupon.  And on Friday Safi got to show her school spirit in a WildCats T'shirt that big brother Logan was so wonderful to lend her.  She felt very special, very cool, and very loved.

 And Nixi just felt cool wearing her rocking Matrix style glasses....random!

Nixi struggled all week.  Lots of psychosis, lots of meltdowns, just an all around rough time.  At the end of the blog I will be including video that shows you what psychosis looks like, at least what it looked like on those days.  The video quality is poor, sometimes upside down, etc. because I didn't want to be intrusive with the camera.  But on Monday she was just completely out there and I asked her to draw me a picture of what she was seeing because I cannot see "ghosts", "monsters", etc.  She drew a picture and explained to me that I was there with a gun to shoot the ghosts and that her dad has guns.  I asked her if kids are ever allowed to touch guns..."NOOOO!"  I then asked her what she would do if she saw a gun..."I'd pick it up and shoot it, shoot the ghosts."  I believe that she would do just that.  She then proceeded to become increasingly psychotic when I told her I needed to go on the patio for a minute to take a break.  The video speaks for itself, and it got even worse after I stopped filming and took my break, allowing her to have the patio door open while I took my minute in the backyard.  So much worse that I had to contact the psychiatrist and ask him to send me something to show police if they should ever be called on us.

She didn't mean to, but she hurt me.  The worst part about it all is after the acute crisis calms down, the deep remorse she feels for having said mean things, hurt me, whatever.  That's what causes these folks to kill themselves, run away, turn to illicit drugs.  The moments of clarity when they see the damage their illness has done, only they don't see it that way...they see it as themselves, not the illness.  For my 4 yr old to feel like she needs to profusely apologize to me, open doors for me, tell me my lipstick is beautiful, "after you mommy" to try to right the wrongs of her illness...its almost worse than the psychotic blow up.  My poor baby.

Anyhow, this afternoon class just kills us.  Remember, with psychosis any state other than right down the middle can increase symptoms.  So, for the 4 hrs before school she vacillates between excitement and anxiety...both above the middle emotions.  The result is not good.  And while she does good at school, she is psychotic there as well.  I have noted her talking quietly to herself each day in the car on the way to school.  She becomes irritated if I ask her what she's saying or who she's talking to so I let it go.  Safi had early release from school on Monday so we went together to pick up Nixi and so Safi could say hi to her old teacher, Mel.  We got into the room and sat down with the kids for snack and instantly I notice Nixi squinting.  I ask Mel if she does that often, "Oh, yeah, not all the time but pretty frequently, at least a few times every day."  Ok, so we know she's hallucinating when she does that.  When she's really intent on trying to focus and stay in this world she squints to quite literally focus better on the real world and cut off her peripheral vision.  Later that evening I told Nixi I had noticed her squinting at school and asked her why...."Ghosts."  Okee dokee!  After a tremendous meltdown day Tuesday, when we were getting in the car to head off to school Nixi told me, "Teacher says we never let our evil take over our goodness."  I know Mel and I know that is not anything she would ever say so I asked Mel and, indeed, she never said that so now we also know that she is having auditory hallucinations at school and they sound like teacher.  It is what it is, this is the only class she can be in so I'm trying to get her to take a nap before school to calm the central nervous system down.  Worked the days of the massive meltdowns and Wednesday but she refused Thursday and, indeed, Thursday was a day of instability.

Saturday Nixi was angry at me for setting some boundary and she muttered under her voice that a spirit was going to choke me.  We talked about it later and its one of her combo auditory/visual hallucinations.  Great.

For the most part, aside from the massive Monday and Tuesday benders....everything was par for the course in this house.  Safi doing better helps things tremendously, and even with the two hr benders Nixi goes on...2 hr. of hell out of a 24 hr day still ain't that bad.  And her insight remains improved.  Within 5 minutes of being awake on Tuesday morning she told me "My brain is bothering me today, making me hurt myself and feeling funky."  And, indeed, she was running into things and her motor planning was off...always a red flag that her thinking is disorganized.  It could be worse, and it may very well get worse.  But that's the nature of the illness...its always going to get worse.  Its progressive, unpredictable, organic, ever changing.  The thing this illness doesn't understand about me and my daughter is that it WILL always get better, too.  If we have to fly to Germany to try experimental canniboid treatments that work as well as antipsychotics but with NO harmful side effects, then Schnitzel it is.  The course of this illness is pretty well established...but this illness has never seen a child like Nixi who has had early intervention services basically since birth and a correct diagnosis so early.  So, Nixi's course remains to be charted...and, while scary, that's terribly exciting and full of hope.

Lastly I would like to briefly discuss some changes coming up for the family and the girls.  Mike and I are divorcing and he will be moving to a cottage apartment literally minutes away on September 7th.  We told the girls today and it was very sad.  It didn't go at all how I thought it would.  I thought Nixi would struggle the most and Safi would understand the concreteness of the concept...mom and dad aren't going to live together but we're always going to be a family, end of story.  No..not at all.  She instantly understood the emotional concepts (why this surprises me and why I hadn't anticipated this I have no clue), and crumbled into a crying ball on my lap.  She cried, "I don't want to lose daddy.  Daddy will be alone.", etc.  We assured her, as well as Nixi, that this was not the case whatsoever and that families are forever.  Then I put them in the car and drove them over to the complex, the girls and I in our PJ's.  I showed them daddy's front door, the playground inside the complex where they played for a few minutes, and the pool.

We talked about them having two wonderful homes now and that, while its sad, its okay.  Its going to be touch and go.  This is a huge transition and it showed for the rest of the day.  Lots of up's and down's not attributed to daddy's move but clearly related.  The important thing for them to know at the end of the day is that they are loved, they have a family, family is forever, and no one in this family...mom, dad, Safi, or Nixi...will EVER be alone.  We would never allow it.  And that, is end of story.

Sarah

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