Picture days at school!

What a difference a week makes.  I usually start with Safi but tonight I'm going to start with Nixi because it was the absolute high of the week and also the absolute heartbreak of the week.

I have continued with the 0.75mg Risperdal med increase and Monday through Thursday were exceptional.  No video of the psychotic musing of my 4 and a half yr old....just fun conversations about who she played with, what Teacher Mel did in class, etc.  She told me that Teacher Mel has wishing ribbons (I believe this to be true as its totally something Mel would have) and when I asked her what she wished for with hers, she said, "A wishing well so I could have more wishes."  Such a rad kid.  Park days were good, bedtimes were good.  She was still psychotic but totally back to that "stable enough" state where she could acknowledge her symptoms but not get mired down in them.  Thursday night before going to dad's she was anxious.  She was still thinking about the Operation board game and "Sam", the character that gets operated on.  She said she wanted to stay with me because she was concerned that Sam might be real and he might come to my house to harm me.  She acknowledged that dad took the game out of his house but she just couldn't let it go.  She went to dad's, had a good time, came home a little "off".  Friday morning she was still doing pretty good but was starting to show signs of wear.  By the time we picked up Safi and Logan and went to the park she was on edge.  At one point Nixi and Zoey bonked faces and that was all it took, Nix was off spiraling down.  I knew she needed to "scratch the itch", but I had no idea what was in store for us when we got home.  She wasn't just spiraling down, she was free falling down the rabbit hole of psychosis and this was a doozy.  It seems that while these major psychotic ravings, for lack of a better term, are decreasing in frequency they are absolutely increasing in intensity.  (Take a look at blog entries from last October when her psychosis hit a steady peak and all day, every day was lived at the bottom of the rabbit hole.)  I have video of this but I'm not including because I'm still processing the evening's events and I'm not comfortable sharing those images at this time.  But I will say that it was a hour long psychotic rage in which she intermittently flung her body, banged her knees, and pounded with her fists on our sliding glass door until I physically restrained her, at which point she became terrified that I was a vampire.  I let her go once physically calm and she kept screaming at me that my voice was different, I was a vampire, that I wanted to kill her, and then the words that simultaneously made my blood run cold and my heart shatter...calmly and evenly, "I'm going to have my sister burn you up, and you'll feel such pain from the fire, and I will you cut you up into little pieces."   These words rolled out of her mouth with no stutter, she had obviously been thinking this thought before but had never verbalized it.

Now, as I type this, in retrospect I am recalling that its not like this is new information.  Perhaps the graphic nature of the threat is new but I've known for some time now, at least since April that Nixi's voices want to cause me harm.  Still, she has never threatened me and it was heartbreaking.  After an hour of just general raving and madness she crawled up into my lap and feel into a deep sleep.  I had instructed Safi to take her tablet and go into the bedroom during all of this because this was the worst explosion of psychosis yet.  She complied and when Mike got here to take the girls to dinner she had a hard time leaving without her sister but we assured her that Nixi needed the rest and it was okay to leave without her.  After a hour nap I woke Nixi up and she was delightful, refreshed, good to go.  She happily ate mac n cheese and repeatedly told me, "Mommy, I'm having so much fun with you!"  I asked her if she remember what happened and she did, saying "You kinda were like a vampire and you sounded strange."...her voice betraying her as I could tell that her "right mind" was telling her that was ridiculous but her psychosis was still telling her to be cautious.  She also said that I had told her that I wanted to kill her, when I asked if I was in the room or not in the room when I said it she said "not in the room", so clearly she's having auditory hallucinations of my voice.  We had a great rest of the evening and a lovely weekend.

As my best friend Emily continued to remind me, this was one hour out of more than a week of great days.  This is true and I have to remember that.  True, also, is that an episode like this at 12, 16, 21 yrs of age and the outcome could have been significantly different and an absolute tragedy.  I, then, also have to remind myself that by those ages Nixi will be old enough to tolerate the meds she likely needs now and that will make a huge difference.  Its good, no, better than good...absolutely imperative to have people around me and us who can remind us of these things so that I don't panic.  Though, I find it easier and easier to detach myself when Nixi is in full on psychotic raving mode and to deal with her like she's a client.  I'm disturbingly calm, concise, and I just take it all in.  Its later, when I'm alone or get a chance to text or talk to my support system that I become a mom again...and later still, when I'm alone, that I allow the psychologist and the mom to collide into a giant ball of tears and gut wrenching pain.  Knowledge hurts, loving someone so much that you can literally feel pain in your chest hurts, being a psychologist and a mom to a schizophrenic child hurts like hell.  It just hurts.

Safi girl.  Poor kid threw up on Monday so I kept her home on Tuesday.  Then on Thursday I got a facebook message from the Occupation Therapist(OT) at school saying that her friend at school had made her cry twice.  You'll recall the girls were having some issues in class, well, turns out it had been being carried out to recess unbeknown to most of us.  So, I talked to the teacher and asked the OT to please make sure that the recess aides where communicating these events to the teacher so that I could be made aware.  I talked with the classmate's dad on Friday and he had the exact reaction I knew he would have, "That sucks, I don't want my kid to be a bully, between all of us we should be able to figure this out because we're so close, family."  Absolutely true.  So, Friday morning I called the little stinker out and told her that I knew she had made Safi cry twice at recess the day before and that she was to stay away from Safi at recess.  When we picked the girls up it had happened again.  Pisser was that the teacher was saying she thought Safi was confused because when she tried to talk to Safi about it she seemed confused.  Uh, yeah, because her teacher said things to her like "Was that yesterday, though?"  Safi doesn't do well with direct confrontation, especially by an adult and in a high rule arena like school where she's not totally clear on the expectations or rules.  So, I called SAfi over and asked her simply, "Did she make you cry today?"....yes, she said she wouldn't be my friend anymore..."Where did she say that?"....on the grass at recess.  The second she said that the teacher gave this knowing look because obviously that is where she was crying that day, NOT the day before.  Really?!?!  Of course, the autistic kid must be confused.  So the talk I had had that morning with the teacher about needing to help Safi feel safe by acknowledging that what was happening was not her fault and not ok....in one ear and out the other.  Yep, folks, the future generations are being guided by these often kind, loving, clueless souls who think they have it nailed!  Horrifying.

The girls had a nice weekend, spending the whole day Saturday at dad's and coming back down and mellowing out on Sunday with a lunch outing with Em and the kids and some Halloween decorating.  We start the coming week in a good space and just wait and see what life has in store for us.

Sarah