A tremendous holiday week!

Christmas eve we decorated cookies for Santa with Emily and the kids, we made magical reindeer food to scatter on the front lawn, and everyone went to bed super pumped for the visit from the big guy in red.

Santa was very good to the girls this year and they were quite pleased.  Santa left gifts at both mom and dad's house so the girls had lots to open and we hit the park afterwards to play off some of the holiday hype.  The day after Christmas we hit Bravo Farms then friends Heather and Sarah came over to house sit and watch the girls because I went on a vacation to the coast.  

Girls spent the weekend with dad, going to see a movie on Friday night, and we ended Sunday with a fab dinner at a local Mexican seafood restaurant, mariachi band and all.  Some blips and mini meltdowns here and there, but all in all a really spectacular week and great lead up to kissing 2013 goodbye!  Check back in next week to see slide shows of the each girl's 2013 highlights and to read about our goals for 2014!

Sarah

When the high's are high, man, they go to the moon and back....and the low's, bottom of the rabbit hole.

The girls' Christmas dance recitals went AMAZING.  Nixi was extremely anxious backstage because it was "taking too long" before they went on, though we only got there 15 minutes early.  But once everyone was on stage they all did wonderfully.  They were totally into it and by the second night they were a little full of themselves and it shows because they made some silly mistakes just because they were feeling like superstars...and they were.  It didn't matter if everything was precise or on time, every single one of the Radiant Rubies absolutely hit it out of the park with their enthusiasm, joy, and pure sass.  Positively divine.



On the heels of three nights of dancing, with the dress rehearsal having been Sunday, the girls were bound to crash...and they did.  Safi, not too bad.  She was very emotional and just generally out of sorts.  Nixi was on the edge of the rabbit hole, here memory for all things big and small and time and space evaporating and the dementia like symptoms front and center.  Vague paranoia was setting in as early as Monday night on the way to the recital, lots of "Are you sure that's where we're going?" anytime we drove anywhere for the remainder of the week.  Thursday was her class's very small and mellow last day before winter break celebration.  All morning Nix was getting herself excited and worked up over it.  We went and got her teachers gifts, their favorite candies, made them cards, and by lunch time Nxi was able to recognize that she was "too ramped up."  She kept running into things, tripping, saying "I'm too ramped up, mom."  I picked her up after school and noticed that her face was blue from the frosting of a cupcake.  She was in a terrific mood and showed me the goody bag Teacher Candi had made for her, then she asked to eat one of the candy canes from it.  I told her she could save it for after dinner because she'd already had a cupcake and the fuse on the powder keg was lit.  By the time we got to the car she was absolutely raging at me.  I'm so mean, I never let her have anything, do anything, I'm the worst mommy ever....once in the car the tears and kicking of the back of my seat.  As we drove away, the threats "I'm going to cook you and your going to hurt so bad from the fire because the fire is going to burn you up!!!!.....I'm not going to live with you anymore.  I'm going to run away and never see you again.  I'm going to cut you up with a knife!"  By the time we rounded the bend towards the park I knew she wasn't going to be able to recover and go to the park, she started screaming "I just want to go home!"  I gathered up Safi and Twilight and we headed home.  She got it together later and the girls went to Mike's for a couple hours.  Friday morning she started in almost immediately, again after being given a boundary that I don't even remember because it was so insignificant and something that on a stable enough day wouldn't phase her.  She raged all the way taking Safi to school, Safi saying "You guys are going to ruin my Christmas party."...her class Christmas party that she had been looking forward to all week.  Got Safi off in an ok state of mind and spent the rest of the day emotionally bouncing here and there and everywhere with Nixi.  She cried, laughed, raged, and was peaceful...in minutes...rinse, lather, repeat for the remainder of the day.  At lunch time she wanted salami.  Gave it to her and micro'ed my lunch.  When she picked up her plate she asked me what I had microwaved.  A benign question any other day, but today I knew it was anything but and asked..."Do you think mommy wants to hurt you?"...Nixi: "Yes, you're doing something to my food."  I showed her my food, which was hot, and her food which was not...sufficed enough for her to eat a little.  As often happens when those with psychosis are in the grips of their illness, she is not eating very much and waking quite early. She then told me I was the best mommy ever and raved about how much she loved me....I asked "Do the people like mommy today?....Nixi: "Nope, they want to hurt you all the time."  Then she told me that they wanted to take me to their castle to be their Queen and a series of other bizarre thoughts and beliefs.  All this without skipping a beat then back to her TV show.  No more teetering on the rabbit hole edge, she was at the bottom.  The stress fractures from the week's excitement had taken their toll and she was no longer able to ignore or pay little mind to the "people" in her head who are there every single day of her life.  Think about that.  She hears these horrible things every day of her life....even when she's "stable enough".  Wow.  Of course she feels tremendous remorse after a rage episode, when she's older these will be the times when she'll be at highest risk of killing herself....apart from when she's so psychotic that she believes the "people" when they tell her that she is an angel and angels can fly.  What a life for this wee little one.  I've increased her meds back to the 1.50mg, and while she woke the next morning with dope circles under her eyes, she's slowly doing better and that's all that matters.

So, with that, I wish you all a very happy Holiday week and can't wait to let you know how our Christmas pans out.....I'm thinking its going to be amazing.  We shall see.

Sarah

Interesting week....not bad, interesting.  Both girls struggled with not seeing their dad over the weekend as he was on a trip.  So, they didn't see him for four days.  It was confusing for Nixi who has been becoming more disorganized again, perhaps due to the decrease in meds and perhaps due to the planetary alignment because at this point it seems that unpredictable and certain.  She talked about dad incessantly....."when are we going to dad's."..."are we sleeping over?"...."when did we go to dad's last time?"  While not mentioning it, the change in routine threw Safi as well because she was full of attitude all week.  While both girls have become exceptionally more flexible when it comes to routines and schedules, it still really puts them out of whack when a big change happens.

Nonetheless, Safi had a tremendous showing in her school Christmas pageant and Nixi was a tremendous audience member!  The headphones worked like a charm and she sang her little heart out.  They both did great and had a wonderful evening.  We paid for it the next day but it was totally worth it.

This weekend Mike took the girls to their dance class dress rehearsal.  It went great and despite the big stage and theater they were totally into it.  Hopefully when there's an audience on Monday night and Tuesday night it wont throw them.  Clearly, the change in schedule will, as they'll be going to bed later.  But, man.  My kids are doing a dance recital in a theater with an audience.  Take a moment to really take that in.  Such a small thing to many, but such a ridiculously huge accomplishment for us.  I'm unbelievably excited for show time.

I will be calling Davis this week to make an appointment for Nixi in January.  I'm going to ask that we do a med wash out...take her off of everything and see what that looks like.  I feel that, at this point, that's the only way will truly be able to make an informed decision about what the next move is.  She needs to be on meds, of that I have no doubt.  So, we need to see what the Risperdal was doing and the only way to do that is to take her off of it.  Perhaps its doing much more than I'm seeing.  But all I see is a kid who's meds keep getting increased because she's struggling...always trying to get her back to "stable enough" and then once she's there we lose it again.  Is it because of the illness, maturation and growth in both her brain and her body, stress levels, sleep or lack thereof?  I just can't tell at this point so I think its worth doing something radical to perhaps answer some of those questions.  We shall see.

This is the last week of school before the whopping three week winter break.  Its grueling, for parents of both typical and neurodiverse kiddos.  The first week is the honeymoon stage, everyone sleeps in, goofs off, good times.  Second week us parents throw a ton of activities at the kids to keep them engaged and somewhat structured.  The third week the kids are asking when they go back and the parents are counting down days, then hours.  Its a magical time of year, I tell you.  Make sure to come back next week to catch video of the girls' dance recital and to see how it did, or did not, effect our week!

Sarah

Another great week!  We're heading into the holidays on a really great note.  It's exciting and simultaneously disturbing.  Waiting for that other shoe to drop.

Nixi remains quite psychotic.  So, stay with me here, I decreased her Risperdal from 1.50mg to 1.25mg.  These aren't tic tacs and no one saw any change with the increase.  She said she felt better at 1.25mg, so 1.25mg she shall have.  She continues to hallucinate daily.  The "people" in her head are always there and this week I learned of the "creepy creatures".  They are different than the people, they sound different, and they are discretely mean and macabre.  Apparently they are not new on the scene, she just never mentioned them before this week.  Her and I were playing our balloon dance party game where we bat a balloon back and forth while dancing to music when she suddenly exclaimed, "Mom, I'm scared.  The creepy creatures in my brain said they're going to eat the world and all the houses."  We talked about it for a minute, "Well, Nix, they say a lot of things and they never happen, right"..."I guess so, mom", then continued our game.  I'm working with Nixi on doing her own reality testing.  When the people say something, or the creepy creatures, we talk about what they've said and whether what they say is likely to occur.  We also talk about her visual hallucinations and that, while scary, they have never been able to actually touch or harm any of us yet.  I say "yet" because she has had tactile hallucinations, or hallucinations that involve physical sensation, but they have yet to be harmful.  She's been doing pretty well with the reality testing so I told her this week that neither her sister nor I would be accompanying her into any rooms in the house, as she generally requires an escort.  We talked about the fact that her illness is lifelong and that she needs to learn to coexist with it so that she can be independent and do and be anything and everything she wants to be.  She is scared but either Safi or I remind her as she runs as fast as her little feet wil carry her down the hall that "nothing happens."  Mid week, the same day as the creepy creature incident, she was demanding that someone go with her into the guest bedroom to get some ponies.  When I reminded her that no one would be going with her and that nothing happens she cried, "Yes it does.  I'm going to explode.  You want to destroy me and fire me with fire!"  I hugged her and assured her that I did not.  She whimpered back, "You want to cook me and eat me."  I told her I did not, she wouldn't taste very good, and I'd miss her if she was gone.  She ran and got the ponies, proudly shrieking, "I got 'em myself, mom!"  And that's what needs to happen.  Nixi needs to experience these small victories over her brain in order to maintain clarity and insight into her illness, as well as just live a full and complete life.  So, we will continue to work on this.  I'm also working on encouraging her to tell other people when she is frightened.  She continues to tell only me, always after the fact, when something at school or dad's house scares her.  I tell her that I cannot help her after the fact and that she must trust the adults there in the moment to keep her safe and help her work through her fears, but it remains unchanged.  After the new year we will head up to Davis.  I have a radical option I'd like to discuss with her psychiatrist.  More on that at a later date.  But we DID manage to make S'mores over in the fireplace one day before school...

Safi had a wonderful week.  School was great, good times at the park, and she is extremely excited about the upcoming school Christmas show and the girls' holiday dance recital.  Last year she struggled during the school Christmas production because of the giant speakers they have blaring music for the kids to sing to.  So, this year she's been practicing in class with her friends with cute penguin ear muffs on.  For the actual show this Tuesday night I will transform our real sound canceling headphones into "ear muffs" so she can enjoy being in the show.  This weekend the girls have dress rehearsal for their dance class Christmas show.  They'll be performing in a real theater and Safi is very excited...Nixi, nervous.  Dad will be taking them to dress rehearsal so I'm hoping the novelty of that will distract from the nerves and add to the joy.

The girls had a blast helping Zoey celebrate her birthday early with a princess party this weekend.  This is the month of special birthdays.  The girls called and wished their Aunt Cory a happy birthday which all parties involved got a kick out of.  Tuesday is Emily's birthday...I've got some surprises up my sleeve for that one because she's just too damn special to not be celebrated like a queen.  And Nana Cummings has a birthday coming up on Friday.  All of these December babies in our life.  Our family...by blood and by heart.  Adds so much fun to an already festive season!

Looking forward to what is sure to be a winter whirlwind of routine breakers, engagements on school nights that kill our schedule, and hopefully a ton of fun and delight along with the given meltdowns and struggles.

Sarah
P.S.  Spell check on Blogger had some weird error so if u catch any typos, keep 'em to yourself!  :)

Christmakkuh Day 2.....

What a great week!

The girls had a really good time at dad's house Monday-Wednesday evening.  Heather, our behaviorist, went by Mike's house Wednesday morning and helped him put up a dry erase schedule like we have at our house and helped trouble shoot any issues they could think of.  But all in all, the girls had a great time and by the time I saw them Wednesday evening they were significantly more stable and in a better place than when they do one night over nights.  Nixi was frankly psychotic, hallucinating, tilting her head back and half closing her eyes to only focus on me and not the visual hallucinations of "bad guys going to eat her" while we chatted, but still "stable enough" and that's just our life.  Nonetheless, it was a relief that they were in a good space and that led us into a really peaceful and wonderful Thanksgiving!  My trip to the Sequoias was relaxing and rejuvenating.  We were all in a really great place for Turkey Day.

First thing in the morning Safi asked for the Thanksgiving poem they wrote in school and proudly recited it for me and sister.

During the day we made baby snow owls out of pine cones from my trip and hit the store because Nixi decided she'd like scrambled eggs for dinner.

Safi had a few mini meltdowns over some attitude issues but was able to get it together and apologize on her own for being a butt.  After quiet time the Safi wrote both her and Nixi's lists for Santa.  It was adorable, "So Nixi, what do you want from Santa?"..."Oh, that's a good one!  Anything else?"  Very sweet.  We all ate together at the table...Safi with her quesadilla, Nixi with her eggs, then quesadilla because she had to change her mind again, and me with my corned beef and veggies.  Afterwards we put up our tree, built a fire, and danced to Alvin and the Chipmunks music courtesy of DJ Safi and her tablet.  It was just all really lovely.  The next day we hit the dollar store and bought a ton of Christmas decorations and spent the day decorating the tree and anything that didn't move.

 Ok, maybe we also decorated some things that did move....

The girls spent the weekend with dad, staying over both Friday and Saturday nights.  So far so good.  They came back tonight excited about their first Christmakkuh gifts and seem to be in a good place.  Our Elf on the Shelf made his grand entrance at dad's, taking their Santa list back to the North Pole and leaving Safi Legos and Nixi a Minnie Mouse vacuum cleaner.  Update:  Just put them to bed and they were pretty wired.  I'm hoping that tomorrow isnt a crash and burn day as they'll both be in school.  We shall see.  But I still see an improvement over the one night a weekend at dad's so I'm optimistic that they'll have a great day tomorrow and a good week overall.

Hope you all had a wonderful Thanksgiving and kick off the holiday season!

Sarah

This is going to be brief post.  Both girls have been sick, first stomach bug and now upper respiratory.  I've not managed to avoid getting mild forms and its been a long week.

Safi had an outstanding week this week.  She was class helper, is excited about two new students in class, and she racked up a ton of points for her class on Friday's Advanced Reader Pajama day.  She lost her second front tooth, though not without drama....Emily's husband Josh whipped a $20 bill out of his wallet and had her look up and yanked it out, sort of.  She started to wince and he lost his grip so it was dangling by a thread.  She cried, then went to over by herself and pulled it out...then asked for the money.  I told Josh no way because she didn't keep her end of the deal and let him pull it.  She was ok with that and the tooth fairy made a visit to dad's house.

Nixi had an interesting week.  She was "stable enough", which includes periods of mania where she loves everything, everything is fascinating and amazing, and she literally dances through her day...but the psychosis never leaves and the slightest thing can tip the scales and send her to the "less than stable enough" side.  That's our "normal", of note this week was that she was exceptionally confused and disorganized about time, place, sequences of events, etc.  She asked that dad have a calendar and a schedule at his house.  This week I'll be going on a brief trip and Heather, our Behaviorist, will go to Mike's house and try to help him essentially recreate what we have at home.

Both girls continue to struggle with the transition from dad's to home.  Mike has been taking them to buy a toy every weekend so that they'll have toys at his house.  The problem with this is twofold.  First, they want to bring the toy back to my house.  Second, its exactly why we started Christmakkuh in the first place, the girls love to get new things but they can't handle the overstimulation of it so it has to be doled out in small bits.  Well, this weekend Safi finally cracked and had a meltdown with dad and sister at Target because she had already gotten a doll at Big Lots but then wanted another toy when they went to Target to get Nixi something.  Too many choices.  Big Lots is overwhelming enough and Safi ALWAYS has buyers remorse.  So by the time they got to Target it was doomed mission.  But Nixi got her toy and I assume it wasn't too bad because I wasn't told otherwise.  When the girls got home Nixi was really clearly visually hallucinating.  she kept tilting her head and half closing her eyes when she spoke to me.  I asked her what she was seeing, "Bad guys, they want to eat me."  So, in preparation for my upcoming trip Monday-Wednesday, the change in routine because those are extra days with dad, and the week being different because of no school...I increased her Risperdal again.  It was the right thing to do, to try to increase it to help her maintain "stable enough", but its disturbing how easy its becoming for me to do it.  I used to be in absolute agony over increases.  I'd do them in small increments, terrified of side effects.  Last night I increased by a full tablet again.  That's okay, its what I'm supposed to do by prescription.  But, man, it wasn't a hard call and that's scary.  At the same time, I think its part of acceptance.  Acceptance that this is what it is, this is what our life will be, we'll deal with any negative repercussions when/if they occur, and she just needs to be okay.  So, she is currently taking 1.50mg of Risperdal and I imagine I'll keep her at that dose for the remainder of the holiday season unless we need to increase again.  I will say this, "stable enough" was the goal and for the most part we have that.  This increase was more prophylactic than anything else, as is common practice when a potentially exciting or anxiety provoking event is going to occur for someone with psychosis.  So, maybe this is me living what I said in a previous blog...accepting and just rolling with it.  I hope so.  Because I've not checked out or gone on auto pilot, I'm still here...thinking, researching, reading...but I'm also just trying to live.  Its the only thing that's fair to the girls who know no different.  I can have pain, guilt, grief, but that shit is my own...they don't own that and I hope that I can keep myself together enough that they never will.

So, this Thanksgiving season I am thankful for many things.  I am thankful for friends, family...both blood and chosen, teachers who care about my kids and me, doctors who are not only infinitely wise and gifted but also caring and empathic, our many critters who love us onconditionally and keep us grounded, this blog that helps me find my center each and every week, anitpsychotics and antocholinergics, SSRI's, and corned beef.  Yep, you read that right.  Nixi and I don't care for turkey and Safi is on a quesadilla kick so this year we're giving the turkey the bird!  We're going to eat what we like....corned beef, new potatoes, carrots, and cabbage!  Nixi was beside herself with joy, Safi said "I don't eat corned beef, either", and Emily is going to give me her turkey carcass for my turkey soup.  Life is good.  May you all have a wonderful Thanksgiving filled with the food of your choice and much peace, love, and laughter.

Sarah

Ying and Yang...shadow cannot exist without light.

Parent/Teacher conferences were this week and Safi is doing spectacular.  She is above where she should be in most areas and her abstract thinking inspired awe in me and her teacher.  For a child her age her abstract thinking is quite good, a kid with autism it is tremendous.  Academically, she is doing wonderfully.  Socially she is a work in progress.  She continues to struggle with waiting her turn, not pointing out the faults in the logic of others (teacher, included), and coping with disappointment.  Those are long term skills to work on, so there were no shockers at the meeting.  On a whole, her light shines bright.  Unfortunately, due to having no school on Veteran's Day  and early release the rest of the week because of parent teacher conferences....the shadow hit us hard midweek.  

On Wednesdays Safi go to speech therapy at school.  She loves it.  She gets to hang out with kids in other classes and grades and loves her speech teacher.  That said, it pulls her out of class and she is bound to miss some cool things.  They have been creating shapes with gumdrops and toothpicks, they then tell you how many vertices there are, etc.  That day when Safi got back to class she wanted to take an Advanced Reader test.  She did, but then missed learning how to create a rectangle using 4 gumdrops and three toothpicks.  When I arrived to pick her up she was in class going through a bunch of papers she was supposed to put in her backpack.  When she finally had them assembled to her satisfaction and she came out of class with the gumdrops and toothpicks in hand I could tell she was going to lose it.  Teacher told her that mom would help her figure out the secret at home (breaking one toothpick in the middle to make the two shorter sides of the rectangle).  I could tell that Safi needed to complete this task literally at school so I got down on my knees and began to help her problem solve.  She was already extremely emotional and easily frustrated.  I had to move her on.  She was crying as we walked to the car and she snapped at Logan not to look at her.  Once we got in the car I asked her to assemble the rectangle, and she did.  Then I checked her lunch and she had eaten hardly anything.  When the kids eat at least half of their lunch they get a small candy on the way to the park.  Safi wasn't going to get a candy, and that was the last straw.  She started getting louder and louder and I told her that if she could not calm down she would not be going to the park.  We rolled up to the park and I had Logan get out of the car and meet Emily and the other kids.  Safi was still freaking out about not getting a candy and I told her she had one last chance to calm down or no park.  All she heard was no park and KABOOM!!!  She began throwing her body back and forth in her seat, a la 3 yr old Safi, and had completely lost it.  I locked the door and pulled out of the lot to go home.  She got up out of her seat and grabbed me.  I pulled over and had the genius idea to tell her something that I had read other parents telling their children from my parent support group, "If you're going to take a swing at me, go for it, and know that it will be the last swing you ever take at me."  Yep.  I said that to a concrete thinking, Classically Autistic kid.  Bets on what happen next?!  You guessed it, she balled up her first, reeled her arm back, and POW!!!  She clocked me in the face.  I was stunned then even more stunned that I was stunned at all given the fact that I had, for all intents and purposes, just given her a direct order to hit me.  She was stunned, too.  And she sat.  She sat for the rest of the ride home.  She walked herself to the bedroom and once the door was closed proceeded to scream at the top of her lungs for a solid 20 minutes or so.  She eventually got it together and I showed her a list of the reasons why she was not given a candy in the car and why she was not allowed to go to the park.  She was calm enough to appreciate the visual aid and a half an hour later when we went to pick up her sister from school she spontaneously said, "Mom, I'm sorry I hurt you and said mean things to you."  She is a remarkable kid.  No Applied Behavioral Analysis taught her to feel sorrow at the thought of hurting someone she cares about.  No Behavioral Interventionist gave her a candy for apologizing to people.  Safi apologizes from the heart because she feels regret, she feels shame, she feels sorrow.  Safi feels.  All people in the spectrum feel, Theory of Mind deficit or not, they feel.  We go to these great lengths in early intervention to create these scripted, rote responses to human emotions and situations when what we really should be focusing on is supporting our loved ones on the spectrum's inner world and experience.  If given the opportunity to frankly be told how and what hurts others without providing the solution, they'll figure it out.  It may be clumsy and untimely, but it will be real.  That's what really matters.

Nixi had an okay week.  She's "stable enough" and that's that.  Again, the transition back from dad's on the weekend ends with a Sunday horror fest.  But here's the beauty of it.  Nixi lost it completely at Emily's house where we try to do Sunday family dinners when we can.  After we left Em texted me that her son Logan had just said, "Having Nixi, Safi, and Sarah is really nice."  We're a family pieced together by love and shared experiences....experiences that we have gone through together.  We are lucky.  Luckier than most.  Psychotic as a hell or not, Nixi is a tremendously lucky kid.  We've got a crew that always has our backs and doesn't bat an eye because we're family and that's what family does.  We are all so used to each other and all of our idiosyncrasies that they just melt away and only the great stuff...the laughs and the love...are remembered at the end of the day.  Truly awesome.

Sarah

Didn't do the blog last week.  I believe its the third blog I've missed in years, and I didn't do it because I was doing something for myself.  No shame in my game, self care is the order of the day and I'm finally starting to take it seriously.  I mention here and there the reoccurring theme that life, my life for certain, isn't a race of speed but rather a race of endurance.  Boy is that ever true these days.

Halloween went really well.  We all dressed up, trick or treated, had a blast.  But it was touch and go with Nix and Safi is starting to show some signs of wear.  

Nixi's illness, autism, and the divorce and the subsequent changes in routine and schedule are all taking their toll and Safi is bending under the pressure.  She's doing pretty well at school though she has even had a few weepy days there.  At home, with me, she's a little distant and when she's not distant she's got a massive attitude.  Now, here's the double edged sword of Safi being on Zoloft....she's handling things in a more neurotypical fashion that in an autistic fashion, and she's handling things in a more neurotypical fashion than in an autistic fashion.  Essentially, its wonderful that the Zoloft has served to decrease her anxiety to a point where she is able to be significantly less "autistically" inhibited.  The challenge for me at this point is learning to parent a child with a foot in both worlds.  Autism, I got covered.  Yes, its a spectrum and yes its always changing and evolving, but I "get" it and I know how to work with it.  The struggle right now is dealing with neurotypical behaviors in an autism friendly manner.  Just because Safi is behaving in many ways more neurotypically, that doesn't mean that she entirely understands the rules that go with that world.  For example, she's very big on testing me and pushing me to see what she can get away with.  Totally typical behavior for a 6 and a half year old.  The grey area; a neurotypical child gets a sense of when they've taken things too far or have pushed too hard from the verbal and nonverbal cues of others around them.  Unfortunately, Safi still doesn't pick up on those and is absolutely stunned and mortified when I have to eventually lay down the hammer.  Its difficult for me because I'm trying old strategies that worked in the pre-Zoloft days and they aren't working now so I'm trying to modify on the fly and I constantly feel like I'm failing miserably.  It ends with Safi, and more often than not Nixi, crying or seething with anger and me crying after they've gone to bed.  

Mike and I need to figure out how to make the transition from each other's homes to the other smoother because when they girls get back from dad's they are a horror.  Safi is full of attitude, Nixi is just completely on edge.  It takes very little to light that fuse and when its lit I have to just stand back and watch the explosion. avoid as much emotional and at times physical "shrapnel" as possible, and let it burn itself out.  It sucks.  It sucks for her, its sucks for Safi, it sucks for me.  Its hard and I'm not sure how to make it better short of coming up with a detailed visual schedule that is followed to a T, with absolutely no variation whatsoever, from house to house.  Its looking like that may need to happen.  Winging it or assuming that we are doing things the same simply because we lived in the same house with the girls for years isn't cutting it.

Clearly, we see things differently and we execute the routine, etc. differently and it shows.  Hopefully we can come together on that and figure it out because its rough after the weekend having to take one to two full days to get things back on track.  Knew this was going to be a rough transition and it certainly is.

Nixi is currently at 1.25mg of Risperdal.  She says that it helps with her thoughts (delusions), seeing things during the day (visual hallucinations), but does nothing for the people in her head (auditory hallucinations).  I have noted, as have her teachers, that she is coping better with limits and boundaries.  I haven't noted any troubling delusional content, though if I'm being honest, I don't ask anymore because she always has delusions.  If its causing her acute fear or paranoia, she understand that its a symptom and tells me her brain is bothering her.  If its not scary to her she doesn't acknowledge it as a symptom so there's not point in talking about it.  Though, just for the hell of it I just asked her where Frank is....without skipping a beat, "He's getting ready for his party tonight.  Its a party about me.  Its going to have a huge cake that looks like me and an ice sculpture because he misses me."  See, the psychosis is always there.  Nixi's inner world is always active and always morphing and evolving.  I suppose I've accepted that to some extent and an unless it causing her distress I don't need to grill her about it, though she talks quite openly about the parts she likes.  She is asking to go to UC Davis and the other day she asked if we could go to Costco so she could see the adults that we randomly ran into that one day from a local Board and Care.  She has been asking dad, myself, others if they have similar experiences as her and she is feeling alone.  I told her that it was a happy accident that we met those people but that there were other kids like her.  She was amazed.  She wants to meet them.  So, my goal is to get some of the kids from the online support group living in the Los Angeles area together for a meeting sometimes over winter break.  Granted, none of them are Nixi's age but who cares.  Nixi doesn't.  Hell, she's down with hanging out with a mid 20's fully psychotic dude, a 50'ish yr old psychotic lady, and a 50 some odd year old schizophrenic man.  These kids are between 9 -14 or so.  Hoping their families are interested and hoping I'm ready for this.  All of these kids have been hospitalized, in some cases on dozens of med trials, etc.  Those are roads I've chosen not to go down thus far and hope to never go down so I expect it will be rough to hear the stories.  I'm also concerned about the kids talking to Nixi about the hospital because if someone brings something up to her or even if she sees something on TV she can become preoccupied with the notion.  A lot of unknowns, but the benefit outweighs the risk and I'm going to try to get it together because she's telling me its what she needs and she knows herself better than anyone.  The one thing I trust with Nixi, and there's not much because this illness robs her often of her authenticity and genuineness, is that if she says she needs something she absolutely does.

So, that's where we are.  This week I'll try to schedule a trip down to L.A., a visit to UC Davis in December, and I need to start touring classrooms throughout the district for Nixi's 2013/2014 school year.  I'm hoping that Mike and I can figure out a schedule where once a month or every other weekend the girls spend the whole weekend with him because they did better after the one weekend when they stayed both nights.  I think it gave them more time to transition and enjoy being at dad's without feeling like there was this huge timer hanging over their heads about to go "ding"!  Early release all week for Safi, parent/teacher conferences, Veteran's Day, a seriously wonky week but we shall trudge on!!

Sarah

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..