As you can see, the girls loved the pool.  Surprisingly, Nixi is the much more cautious one in the water.  Usually when the girls take a bath together Nixi likes to lay on her back in the tub with her ears submerged in the water.  Without fail, every time, this throws Safi into a complete panic.  She screams, cries, and is generally terrified that Nixi is going to drown.  In the pool, different story...sort of.  Safi  is very keen on learning how to swim and you can catch her out of the corner of your eye experimenting.  She's great at kicking and is learning how to tread water.  She will not allow us to help her float on her back.  Nixi will float on her back if we hold her hands.  Neither are getting the whole holding your breath business and they are not keen on putting their heads or faces in the water.  I ended up buying them life vests because it became pretty clear that, though they can stand out of the water, if they were to trip and fall under they would be totally put off of the pool.  If they can learn to hold their breath and float on their back in the coming months I will be pleased.

Nixi had her last two days of preschool at Maple this week.  It culminated in a pirate themed party.  She was pretty nervous about it but she went and she had a good time.  I just kept her moving through all of the activities and that helped.

Safi had a great field trip with her class and was super stoked that Mike got to go with her.  She had her last speech session of the year ans was super proud of the craft that she made for her therapist.  She's really excited about this week's activity day and she can't wait for our grass roots summer school to begin.

Thursday morning I was brushing my teeth in the bathroom when I head both girls scream and begin crying hysterically.  I ran into Nixi and Mike's room and saw Safi holding her leg, crying.  Nixi was standing up against a wall screaming "I'm sorry, I'm so so very sorry!" and crying.  As I scanned the extremely tight quarters I saw a large box fan fallen near Safi.  I asked what happened.  Safi: "Nixi falled it on me!"  I asked if it was an accident.  Safi: "NO, on purpose."  I turned to ask Nixi but before I could get a word out she said, "It was on purpose and I'm SOOOO sorry!"  They were both crying inconsolably.  I separated them and comforted Safi, making sure she was physically ok as well.  She was.  Then I turned my attention to Nixi.  She was an absolute mess, so upset.  I calmed her down and we left to Safi to school.  On the way back home I asked Nixi very generally, "Does anyone every tell you to do things?"  I could have been asking about her sister, teacher, dad, or friends.  Nixi burst into tears, saying "I didn't want to do it, I didn't want to hurt Safi.  They kept saying 'Do it, just do it.'"  I asked her who even though I already knew the answer, I knew the answer before I got to the doorway of the bedroom that morning because of her prolific, frantic, instantaneous apology.  Nixi:  "The monsters.  They also say to come with them and not to live with my mama or my family."  Nixi had had a command hallucination.  Command hallucinations typically come in the form of audition, or voices, but can also be forms of delusions such as thought insertion.  (Check out this link for a good synopses of the types of hallucinations:  http://www.officer.com/article/10426693/hallucinations-the-ultimate-betrayal-of-the-mind?page=2)  When we got home I asked her if the monsters ever tell her that they will give her a consequence, as command hallucinations generally are in the form of "do this or X will happen to you."  Nixi:  "They say I wont be able to live with my mama."

This comes on the heels of me re-finding and re-reading this absolutely powerful and informative article:
http://www.motherjones.com/politics/2013/04/mental-health-crisis-mac-mcclelland-cousin-murder .  It a fairly long article but extremely well written and there is no fluff, all of it needs to be there for the reader to understand how quickly and easily mental illness can go very, very bad.  Please read the whole thing.  I had read it and posted a link to it on Facebook in the beginning of the week.  I had not been able to sleep the night I read it.  Not because it was "chilling" or a shock, but because it brought back of flood of memories of inmates that I had worked with from L.A. County Jail to California Department of Corrections.  Some of them had killed because of their mental illness, scores more had nearly killed or had seriously injured their victim(s).  I was brought back to a woman who I worked with in a community clinic during my first pre-doctoral internship.  I was suddenly seeing all of these past clients with such clarity.  At the time that I worked with them I don't believe that I truly understood the depth of their illnesses.  I certainly never questioned their living hell or the validity of their reports if I was certain that they were not malingering/faking it.  But I know now that I didn't truly understand the gravity of their situation.  You see, I never knew them before they were ill.  I met them first as an illness, and if I had time (hard to come by working in corrections) I sometimes got to see a little of the person behind the illness.  Now, with Nixi, I see things much clearer.

After reading the article I decided to make a social story for Nixi about her illness.  It would have pictures and brief sentences that she could memorize.  It would normalize her illness as just another difference, life Safi has Autism, mom and dad wear glasses, etc.  It would talk about her symptoms in language that she could understand.  It would talk about why she takes medicine and how important it is to always take it. Most importantly, it would include a section with pictures of all of the people that she could talk to about things that she was thinking of feeling.  People other than Mike and I.  I am making this book to lay the ground work for what will hopefully be a lifetime of excellent medication compliance and self-efficacy.  I am also making this book because it is almost an absolute certainty that at some point in time Nixi's illness will make her family the enemy.  The article addresses this very well and I never want Nixi to feel that she is alone and that she cannot trust anyone.  I want her always to have people to whom she can share the burden of her world with.

Then, Thursday happened.  While I am certain that this is not the first time Nixi has had a command hallucination, this was the first time it was directed at one of us.  Before we went up to Davis this last time she had hurt one of the dogs, this was due to a command hallucination.  That was extremely disturbing but not even close to the level of horror that Thursday was.  Then, on Friday Nixi told me that I hurt her thumb.  I had been holding her wrist, as she doesn't like her hand held, but I was certain I had not touched her thumb. I asked her how I had hurt her thumb and she said "You hurt my thumb with your magic."  She looked confused, cautious, and betrayed.  I told her that I was sorry that she thought that and asked her if it was possible that her brain was bothering her.  She said yes, but with trepidation.  This is called a delusion of reference.  She has these often but this was the first time it had a negative attribution directed at me.  Usually its something like believing that I can hear her when she's at school or that she can control something like make birds fly by wiggling her finger or control the wind with her thoughts.  (Read about delusion types here: http://www.minddisorders.com/Br-Del/Delusions.html)  God, as I type this I am suddenly stunned by how bizarre this all is and by how much I have normalized or down played these things in my mind.  I am in a good deal of denial.

 I had planned to type next that her illness is getting worse, progressing.  And it is.  But I think I'm also seeing it more clearly because it is directed at me and Safi now.  That is new, and heartbreaking, and scary.  I can tell you anything you want to know about schizophrenia.  I can explain to you its course.  I forget, though, that the facts and theories I spout out apply to my daughter.  She will get worse.  Her illness will progress. Its impossible that she has hit the peak of her illness at age 4.  With autism, at a certain point you hit the peak and you see what it is going to be for your child.  Yes, they will change and with all of their changes over the lifespan their disability will change, too.  But not the core of it.  It will morph but you're always able to see where the new symptom has sprouting from an old one and there's a level of comfort in that.  There's not a lot of surprises, pathology wise.  The surprises are generally in the development and maturation of your child, not the disorder.

Not so with schizophrenia.  It has a life of its own and it grows and morphs, separate from the individual and with terrifying uncertainty.  Delusions grow, get bigger, get more involved, more detailed.  Hallucinations change, morph.  The voices can go from being the "monsters" to being the voice of your mother or sister.  It all changes and it changes and morphs over the lifespan.  While some themes may stay the same, as a whole the illness has a life of its own and is unpredictable and ever changing.

Sorry, I realize this post has gotten a bit disjointed.  I'm still sorting this all out.  In any event, I have not been able to sleep since reading the article.  At first it was because I was focused on what we can do now to help build psychological armor for Nixi so as she ages she will always have a at least a toe in reality.  Teach her about the symptoms so that she can recognize when she is having them, resist them, and reach out for help.  Now it is because the atricle is chilling, scary, and so horrifically heartbreaking.  It is now so real.  It is horrible.

I'm fairly certain I'm going to be unable to articulate clearly at this point as my  mind is racing so I'll end now.

Tuesday is Safi's last day of school and I get to go and be a class helper.  Super excited.  Friday night is Dreamnight at the Zoo in Fresno and we are all extremely excited about that.  The girls had a blast at their best bud Sophia's birthday party this past Saturday.

The pool remains a daily joy.  Nixi's psychiatrist wants her meds moved all to one dose at night (.125mg + .25mg), believing that she was experiencing akathisia and cannot tolerate the med at a higher dose.  We'll stay the course for now but he said we may need to start thinking about another med or adding a medication to counteract the side effects of the Risperidone at higher levels.  Life trudges on.

Sarah