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
Monday
Tuesday
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