Rough, rough week.  Halloween, Schizophrenia, whatever it is, really putting Nixi through the wringer.  She's nearly back to where she was at this time last year in terms of fear of her symptoms.  The new addition is that since her symptoms are so full bodied and well developed there is less random panic and more specific terror.  It must be pointed out, because Emily will likely sock me in the arm if I don't, that the outwardly visible hard times for Nix are snapshots, brief outbursts in a full 24 hr day.  This is absolutely true.  Though, sadly, the psychosis that pushes her to the point of these obvious breaks is with her always.  So, lets just get down to it.  Monday she had a a massive meltdown after the park that was completely out of control for a good 10 minutes, ending in her pulverizing her knees by slamming them repeatedly into the bedroom door.

 Following that was a calming down period that I audio taped, still full of psychosis and visibly hallucinating more than I have ever seen her do.  I emailed the psychiatrist who is in Florida at a conference and he said to increase her Risperdal by .25mg every week up to a total of 3mg daily, if need be.  She was taking .75mg, and if you read this blog regularly or know me you know I increase in .125mg increments to try to avoid side effects.  By Wednesday I made the choice to increase her by the full tablet.  So, she is currently taking 1mg and this next Wednesday I'll be increasing her by another .25mg because I have seen absolutely no improvement.  We'll get her up to 1.25mg right before Halloween and then let it be for a week or so to see if things calm down after Halloween has passed.



The kicker, Nixi knows no different so she's okay for the most part.  Clearly, command hallucinations, visual hallucinations, voices, etc aren't pleasant, but for her they're "just a little worse" than what she's used to.  So, all of this scrambling, fear, heartbreak....mostly those of us around her who know nothing of her internal world.  Its like Safi and autism, she knows no different so she thinks we're kinda weird.  Truth be told, we are.  We're all weird, confusing, fractured human beings.  We may not all have a formal diagnosis, but we all have our struggles.  And for those of us who do know different, we cant fathom living with a daily illness or disability like these kids do.  That's what makes these kids absolutely amazing.  Its like sitting on your couch bitching about not having any ice cream in the fridge while simultaneously a kid in Morocco is super stoked because a tourist handed him a piece of flat bread.  Perspective is everything.

So, as I'm writing this I have realized that I am going about this all wrong.  For this month, and perhaps forever if I can contain myself,  I choose to change my perspective.  I will cry with and for my children when they struggle and tell me or show me their struggle.  But I WILL NOT randomly cry about their conditions or disabilities just because they have them.  Fuck that.  My kids complain about a lot of things, wanting an extra frozen Go Gurt, a happy meal, a toy....typical kid stuff.  They DO NOT complain about their limitations, struggles, or diagnoses.  They do not ask me why they have "X", they do not ask me why other kids they know do not.  They ask me for princess wigs for Halloween, to go to dance class, to play at the park with their friends.  They are kids.  Just kids.  Safi knows she has autism, Nixi now knows she has schizophrenia...yet neither of my kids uses these as excuses for ANYTHING, or as a way of referring to themselves at all.  They are Safia Dot Seifert and NixiRogue Hanks Seifert.  They know who they are and they are good with who they are.  Some day I hope you ladies read this...because today is the day that I promise you that I will see you.  I will see you as you see yourselves.  I will always support you and I will always be your researcher, advocate, sometimes clinician, nurse, therapeutic brainstormer and out of the box thinker....but only after I've just been your mom.  You are beautiful, smart, funny, loving girls that see your similarities with others far more often than you notice the differences and that's exactly as it should be. That is how you will achieve whatever you want to achieve.  You girls believe in yourselves and I'll believe in you and we'll make anything and everything happen.  I promise.

Mom

To everyone else, have a wonderful Halloween and maybe take a minute to look at your life and see if there isn't an area that could use a change in perspective.  May make all the difference in the world, I don't know that for sure but maybe we can all figure this out together even though our journeys are different.  Kind of feels like a giant sociological study based on the honor system.  Feel free to share any revelations or shifts in you perspective on my Facebook page!  Let's change our worlds, today...who knows, may change the world at large tomorrow!

So, took a little break the last week because I'm absolutely struggling...a lot.  It was September 5th last year when Nixi had the psychotic break that she's never returned from.  I was actually looking for that date a few days before last week's blog so I could write about it.  When I opened the log I started from that day forward leading up to our first UC Davis visit in November of 2013, I started reading it and it floored me.

When you are a special needs parent, regardless of the special need, you are a firefighter.  You are so used to putting out fires on a daily basis, and so relieved when they're done smoldering, that you just trudge ahead and sort of block out the details of those fires.  You have to or you'd never be able to cope with the next fire, because its coming...its always coming.

I can see that Nixi's illness is progressing, her meds not working as we all had hoped they would, I can see the big picture.  What I forget is how we got here.  I am so relieved the moment there is a shred of stability that I block out everything leading up to that point, or at least the specific details.  I read that log and was shocked, I mean really shocked.  As I was reading I kept having these visual memories of the events a mere year ago.  October 2012 was when Nixi's illness hit a fevered pitch.  I remember her walking down the sidewalk trick or treating on Halloween, holding Emily's hand and telling her that she was actively seeing a disembodied hand.  There was an entry for every day from September 5th until the night before the first Davis trip........and there has been an entry everyday thereafter.  In fact, it has just been in the past month or so that I have started not keeping daily records simply because now its more notable when Nixi is not absolutely out of her mind.  So, I now keep a log of "stable enough" days.  That log is short.

So, right now Nix is flip flopping....one week "stable enough", the next week unhinged, then "stable enough".  Last week, not so great...worse, yet, she initially appeared "stable enough" because she's getting so good at hiding her symptoms.  This week, she's "stable enough".

One of the hard parts of this illness is that it makes her feel exceptionally special...grandiosity...a feature of the psychotic disorders.  She has people in her head that tell her what's going to happen in the future, that she's an angel, what others are thinking, etc.  Yes, these same "people", auditory hallucinations, are also exceptionally cruel and scary...but they give her knowledge that no other living being has.  A side effect of that is a deep sense of entitlement.  When Nixi is relatively stable, and her meds are working really well (like one month out of all of this), she is absolutely the sweetest, most empathic and intuitive child you have ever met.  The less stable and the worse her symptoms are, the more demanding, hostile, mean, obstinate, and downright cruel she can be.  She treats me like I am a fool, an utter imbecile.  She is exceptionally bright so she is able to come up with really cruel venom to spew when she isn't given her way.  Now, she NEVER blames any misbehavior on her illness, remember, she's hiding it and at her worst doesn't believe that she is ill at all.  Its draining to have a 4 and a half yr old that you love so dearly and that you know loves you back bark orders at all day, speak in a nasty and disrespectful tone, etc.  I don't accept this part of her illness.  Its not okay to treat others poorly and she is given consequences for each and every dagger that flies out of her mouth.  And I feel ok with that, because I will never allow a symptom to be shaped into a behavior.  The sad part of it it, the consequences are largely ineffective because only about 10% of this is a jerky little kid, the rest is a schizophrenic person who is not stable and no behavior modification is going to change that.  So, I continue with the consequences and behavior plan most surely to make myself feel less powerless in this situation.  But if that helps, I'll take it.  No other choice.

Safi has been a little up an down with school but things are leveling out.  She had a great field trip to the farm with her dad last week, lots of fun, and her Sophia were two peas in a happy pod again.  She is, on a whole, really doing well and its hard because I don't want her to get lost in the enormity of her sister's illness and personality.  We need to ramp up the social skills work because she wants to be a mom when she grows up.  If she's going to reach that goal we've got a hell of a long way to go but its doable.  She would be a wonderfully caring and creative mother.  I may just be a grandma one of these days, yet!  She certainly has a slew of little admirers vying for her attention at school.  Its really cute, and she has no clue its even going on...most of the time she's not even aware that she's involved in the interaction.  We will work on this.  We will nail it.  She is amazing.

The girls had their first overnight stay at dad's and it went wonderfully.  Nix was very nervous about it, Safi was extremely excited.  At the end of the day, or night, they were both delighted with the stay and looking forward to their next one next weekend.  Fallout Saturday night and Sunday was pretty severe, but that's what its going to be for a while and that's ok.  We still had dinner with Emily and the kids Saturday night then hit the pumpkin patch with them today.

We powered through and we will be starting the week in an okay place.  All I can ask for and sometimes that's even too much, but not this week...this week we are going to be okay.  Who knows, fabulous could even be lurking just around the corner!

Sarah

Nixi last week after school...Tues

Thurs...


And, to get you in the Halloween mood, Safi reads books Nixi made in school for our bedtime stories..

Nixi

For this week, that says it all.

Sarah

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