Straight to the point because my brain is about to EXPLODE!!!!

Safi had a dicey week at school.  Her teacher is trying something new this year.  A reward system where children can earn fuzzy balls for following directions, being respectful, working quietly, doing their best, and trade them in on Fridays for silly coupons.  It is the most subjective, arbitrary system I have ever seen.  Nonetheless, last week Safi earned enough fuzzies for two coupons.  She picked "silly slippers" and "furry friend", so she was allowed to wear slippers in class one day and bring a small stuffed toy to sit on her desk for a day.  Safi chose to do both on Monday.  I pick her up and she runs to me and asks if she can wear silly slippers and bring her little unicorn another day during the week.  I say no, the coupon is for only one day.  Then, her teacher tells me that Safi was bummed because she was the only student who did her silly coupons that day and so she told her she could do it again on another day during the week.  NOOOOO!!!!
That kind gesture, and also self serving because it obviously got her out of dealing with a meltdown from Safi, changed the rules.  Not only did it make the system confusing to Safi, but it ran the risk of other kids resenting her because she got to do it twice.  So, I told the teacher absolutely not, called Safi over, and reiterated that coupons can only be used ONCE.  After Safi walked away I told the teacher that avoiding, say, a level 4 meltdown today sets her up to deal with a level 15 meltdown in the future when she wants the rules to bend again and you say no.

Now, when I pick the kids up from school I alwasy ask them what they're favorite part of the day.  Logan sasses me with a smart aleck reply but eventually gives in and tells me.  All this week Safi was saying recess.  That's weird.  Very weird.  She NEVER says recess because she loves math, reading, etc.  Major red flag.

Mid week Safi was having several small crying jags during class because she wasn't being called on first.  Teacher; "That's real typical of kids this age having a hard time taking turns and waiting their turns."  Me:  Tell me more about this fuzzy deal because its all she cares about and she's working as hard as possible to get them.  So, I don't think its trouble waiting turns...as that's never been a problem for Safi.  She's trying to earn those fuzzies"  Teacher gives me a small breakdown but not very detailed and the kids are restless.  We leave it at that but I know in my soul that the fuzzy are effectively killing Safi's joy of learning.  She can't relax because she needs to earn them.  Its all she can think about.  So much so that her only respite is the chaotic recess of hundreds of screaming kids.  The ship is sinking.

Friday Safi runs up to me, chipper and joyful....but her eyes are swollen and red.  I immediately know she's been crying and crying HARD.  Teacher tells me that Safi only had enough fuzzies for one coupon this week and that "she became really defiant and I had to become quite firm with her.  It lasted a good 10 minutes."  So, I ask her to specifically tell me what kids need to do to earn fuzzies.  I am horrified when I get the answer.

Completely abstract concepts and worse yet, the fuzzies are doled out totally subjectively and arbitrarily.
I told her as much and that this would be the bane of SAfi's existence for the whole year if we could not find a way to operationalize these concepts and give SAfi concrete ways of earning fuzzies.  See a theme here, Autism=Concrete.  I can say it over and over again but it never seems to sink in.  So, I asked that we take care of this before Monday and texted back and forth with her over the weekend.  This is the system she has come up with.....

Fine.  Dandy.  Swell.  I wrote it up and have shown it to Safi, she gets it, okay.  Safi will earn fuzzies for tasks completed.  But here's the real kicker.  Teacher tells me she's doing this only for SAfi (okay, cool, because wasn't that who we're talking about?!) because the fuzzies are not for task but rather are for behavior and class management.  Then she goes on to say "And Safi has no problem there, she does what she supposed to and does not have those problems."  Awesome.  THEN WHY DIDN'T SHE HAVE ENOUGH FUZZIES FOR TWO COUPONS ON FRIDAY?!?!?  Because its subjective, arbitrary as hell, and just plain ineffective.  Unfortunately, third week in to school and I had to throw the bitch swith on and try to explain to Teacher that this system is INSANE.  Luckily, my cheek hing up on her and by the time we got back on the phone she forgot where we left off and I just went straight to discussing the days of the week.

Fingers, eyes, toes crossed that this helps because Safi had to massive meltdowns over the weekend.  Old school, 3 year old Safi meltdowns.  During the end of the last one I asked her if school was hard or easy.  "Hard"  Because of math, kids, reading?  "Fuzzies".  Hey fuzzies, I hate you.

Nixi had a decent week.  She's doing great at school, a mess after.  Her medication makes her body tell her she's hungry all the time so she has numerous mini meltdowns daily over not being able to eat.  Its getting worse, harder and harder to distract her and keep her distracted before she begs for food, in tears.  I'm monitoring her intake, timing how long in between snacks...but I noticed the other day that her cheeks are slightly fuller.  She's gaining some weight.  Her psychiatrist is going to send out a lab slip so we can do a metabolic panel and glucose test.  She is as stable as she is going to be for now.  She remains psychotic, hearing voices, at times delusional, seeing things, strange thoughts...but she is coping better than before and her thinking is less disorganized.  That's the best we can do at this point.

Spent the weekend with Emily and the kids, adding Amanda and Sophia into the mix on Sunday.  Barring a massive meltdown by both girls at Emily's house on Saturday and a few mini melts from Nixi at the park today...we had a really full and fun weekend.  The girls suckered Mike into taking them to Apple Annie's (horrid food) on Friday night and they were pleased as can be.  So, we'll see what this week brings and just keep truckin' on.

Sarah

I'll get right down to business.  Nixi had a great first week of school!

The first day went off without a hitch...with the exception of the difficulty of mid day preschool.  The wait just kills her.  So I need to provide 4 hrs of straight engagement and stimulation to keep her in the right state of mind to even get there...but get there she did.  On the ride home she was very disorganized and confused, but happy.  Second day much the same as the first.  Third day, she woke up a psychotic mess.  She was just absolutely off her rocker psychotic.  It was a rough start to Safi's day, but its our reality and we moved on.  Both girls had good days and Nixi returned to me every bit as psychotic as she left me.  The rest of Wednesday was just a whir of hallucinations, delusions, crying, happy, screaming, confused, delighted, a roller coaster.  Then Thursday...right as rain.  As stable as she's ever been since this illness took hold and refused to let go.

Safi is still doing wonderfully in school and she loving every minute of it.  At home she tries so hard to appease and entertain her sister.  She tries everything possible to make Nixi's world right, even to the point of scolding me if she believes that I am making Nixi's world wrong.  Delightful and sweet, but clearly consequence worthy.  And she takes consequences like a champ.  She's trying new foods, enjoys asking Logan what he did in school when we drive to the park every day after school.  And she even told me the other night, when offered a bite of my meal, "No, but thank you.  When I'm am adult I'll eat that, okay?"  Its mind blowing how well she is doing on the low dose of Zoloft.  I also ran into a mom of one of Safi's classmates from last year who said her daughter was sad because she wasn't in class with Safi this year "because Safi is so smart and fun."  That's the impression of a neurotypical kid BEFORE Safi was even on the Zoloft.  Made my heart burst a seam!  Its also mind blowing to be suddenly raising a sort of neurotypical kid.  She is much bolder, much sassier, much more independent and down right jerky. She truly is my kid!!  While it can be shocking, and at times annoying, its so unbelievably cool that I cannot put it into words.

The circus was amazing!

The girls did wonderfully.  All of the kids did wonderfully...it was Africa hot, they wined a little, sweated a ton, but no meltdowns from anyone and everyone left with huge smiles!  Nixi had what I like to call a mental health moment in the portable loo.  The flies creeped her out and then there was a tiny spider.  She proceeded to begin shaking and climbed up my body like a koala bear.  I whacked the spider but by then every piece of dirt was a bug and she needed to leave without going potty.  Had to put a diaper on her because her meds make it difficult for her regulate her body temperature and it was HOT in that tent.  We were pumping water into her as her face turned fuchsia.  She was heartbroken for a minute, saying "But I'm a big girl."  Emily quickly assured her that she was still a big girl and that was good enough for her.  Amanda took charge of hydrating and distracting her when need be.  But on a whole, other than the bathroom incident, she did wonderfully.  Safi was absolutely mesmerized, as the video will show....happy feet, flappy as hell, mouth wide open.  It was beautiful.  We all enjoyed the show and when it was time to go, and an hour and a half past her normal med time because I didn't want her sleepy during the show, it was game on.  As I waved goodbye to Amanda and Sophia and hugged Emily I yelled in my best American Crown Circus ringmaster voice, "Ella es psicotica!"....or, she is psychotic!  And boy was she ever.  It was kind of a happy psychosis...the ripples before the great white emerges.  Within 5 minutes of being home the great white showed its teeth...literally.  She bit her sister and went into a hysterical "I want my mommy, I miss my mommy" jag, even though she was curled up into a ball in my lap.  She needed to go into another room with me to calm down but after about 25 minutes she was ready to feed her guinea pigs and rats and read a story before bed.  25 minutes of hell for nearly 3 hours out the house fun....totally, completely worth it.  And when she woke up this morning happy as a lark and excited as hell to tell her school friends about going to the circus...confirmation.  She knew her limits today, saying she wanted to go home right after dropping Safi off at school instead of hanging for a bit for our regular chat time with Amanda.  She had a good day at school...and its been touch and go since.  There is a new delusion brewing that I'll talk about next blog.  For tonight I want to leave things on a great note.

Sarah

*Side note:  We lost all power for the most part county side due to a substation catching fire last night so the blog had to wait....again!  Spent the night spraying my sleeping Nix with a water bottle to keep her cool due to her meds making it difficult for her to regulate her body temperature.  Luckily, by a quarter to two power was restored, spray bottle put away, and the girls none the wiser!

Circus extravaganza!!

Man, what a week.

Safi started first grade and it went WONDERFULLY!  She loves her teacher, is making new friends and enjoying seeing her old ones, and she tells me all about it!  We have her taking the 3/4 of a pill of the Zoloft and its working beautifully.  Quality of speech is back to "wow you" levels, and her coping is terrific.  She told me all about playing on the playground, the class rules, the reward system....beyond dreamy.  She is exactly where she should be and it is amazing to watch.  After the first day she was so wound up and excited that I knew she'd have to blow off all of the adrenaline and emotions some how.  Indeed, she did.  She got herself stuck on a climbing wall at the park.  I helped her down. She did it again and I told her she needed to figure out how to get down herself.  She proceeded to scream that I was a terrible mother and that she was going to smack me in the face.  Yeah, sure thing kiddo, once you get off that climbing rock by yourself you give it a try and see how well that works out for you. She needed to get it all out, all of the feelings, and that was okay.  Did I like the method, no, but that's never been up to me.  Only Safi knows how to scratch her itch.   Much screaming and crying...but she made it off the rock.  I gave her a high five and said that I expected an apology..."I'm sorry" would have been sufficient in my mind.  What I got was amazing...."Mom, I'm sorry.  I'll never say I'll smack you in the face again."  Rest of the day, the following school day, and the weekend have been top notch.  Safi is hitting her stride.  Watch out world.

Nixi.  What to say about Nixi.  I took her Thursday to visit her classroom and teacher for a dry run of sorts and so that I could take pictures for her slide show.  Started bad with the regular parking lot being closed.  We had to enter the school from the front which we had never done the two years that Safi went there.  In the car she was rocking our to the Rolling Stones "Shattered", but I could tell she was nervous because she was rhythmically kicking the hell out of the back of my seat along with the beat.  She remembered which classroom was Teacher Mel's and she was delighted to get to open the door and let herself in.  I was surprised to see strangers.  A new aid, Teacher Candy, and a new preschool school psychologist.  Much to my relief, the new school psych is lovely, young, interested, eager to learn, and seems genuinely invested in Nixi.  Massive relief.  Nixi played, reacquainting herself with the glory that is Mel's room.  She prepared a lunch for Horsia (her mom hair horse), and flitted around the classroom as Mel, Tessa (the pysch), and I spoke.  She lasted a good 30 min then crash and burn.  I could tell that she was hallucinating, Mel could, too.  It was obvious that she was seeing things and she asked to go out of the classroom and play on the playground.  Once out there she saw a bug and it was downhill from there.  Man, she talked about that bug well into the night...and not in a good way.  On the ride home I asked her if I could ask her a question and if she would tell me the truth.  She said she would.  I asked her if she was seeing anything in Teacher Mel's classroom.  "Yes, monsters."  I asked if they were scary.  "No too much."  She was off and running on a complete psychotic bender for the remainder of the day.  Not that she was stable to begin with, we're still not there yet, but hugely worse.  Meltdown at Safi's school with pick up because it was too crowded, delusional, just generally really unwell.  Then Friday she had a good day.  It was like her psychosis reaching maximum capacity the following day had scratched her itch.  She had a lovely day running errands with me and played the whole time in the fountains with Sophia and Emily's kids after picking Safi up from school.  She had a good night, too.

Now, because I cannot leave well enough alone...I didn't.  Let me preface this by saying that most adults who's illness is well managed by meds routinely increase their meds a few days before a potentially stressful event and until the event is over.  So, Saturday rolled around and it was time for the next Risperdal increase, if needed.  Based on what I stated above, the fact that she only had one good day (Friday) and is still not stable, and with school starting on Monday I gave her the additional .125mg in the morning.  While I'm still not thinking akathisia, man was it a gnarly afternoon.  She just doesn't seem to do well with Risperdal during the day.  It hits its peak dose within a few hours, the most likely time for side effects, then the steady state is maintained for about 20 hr.  Its all terribly detailed and confusing.  I wont bore you or confuse you with it all.  But what I think it means for Nixi is that she needs to hit that peak state while she's asleep.  If she hits it during waking hours she's a mess.  The girls wanted to fly kites.  Excellent day for it.  Took them to buy kites and Safi brought an extra she had never used.  They picked their kites and we were off.  Once at the park I began  assembling the kites and the one Nixi chose was broken out of the package.  Bad start.  Safi offered her the kite she had gotten from the Easter bunny.  Very sweet, and only semi appeasing.  The girls were off and running, literally...there wasn't a ton of wind.

Then, literally at the moment I stopped videoing....CRASH AND BURN!  Nixi's kite wasn't as high as Safi, she was thirsty, she needed to eat (The Risperdal is making her feel insatiable hunger all of the time.  Try telling a 4 yr old who's body says she needs to eat that she just simply can't.  Hard to tell what's worse, the hunger meltdowns or the psychosis the meds are supposed to be treating.)  Nothing was right in Nixi's world and she completely fell apart, reduced to a screaming, crying mess of a little thing.  Raging that I am a terrible mommy, then hysterically crying that she needs me.  It was horrible.  We went home...because you cry and scream at the park you go car, go home, go bedroom or chair.  And she did, crying the whole while.  It was sad.  It was her illness...but it was also the medication that I chose to give her that contributed to this total meltdown.  Did I do the right thing?  Why didn't I trust my gut and give her the increase with her nightly dose, despite the psychiatrist telling me to rotate the increases AM, PM, AM, PM, etc?  Why are we doing this to her at all?!  We have never seen an improvement beyond the gains we saw at the .25mg dose, which was total obliteration of her disorganized thinking/speech...no small gain by any means...better attention, focus, and coping.  But there's a reason we've been trying to increase.  Initially it was to see if we could get to her hallucinations and delusions.  Not obliterate them, though that would have been lovely, but at least keep them from prompting her to hide a knife under her pillow.  Most recently because she has gotten worse in all areas, and the disorganized thinking has crept back in.  How much do we keep throwing at her in hopes that she will go back to the level of functioning she was at with .25mg.  Do you see how ludicrous that all is.  I'm trying to get her back to where she was in April on her .25mg starting dose by upping her meds to a total of .625mg now.  What the hell are we doing here?!

I'll talk with the psychiatrist on Monday, but I think I'm calling it a day and we're staying at the .625mg for awhile.  At this point it will be nearly impossible to tell why she's not stable...could be the wrong med, could be the transition to school, could be Safi back at school, change in park routine, could be progression of the illness, could be anything.  I'm not taking her up the 1mg because I just don't think we have enough valid data to justify going there yet.  I need a metabolic panel to check her liver, kidneys, etc. and a glucose screen to check for hyperglycemia.  I need to see what we are doing to her.  Agreed, she is at a point where we need to put her mind before her body...but we can't ignore her body, either.  I'm getting closer and closer to letting go of the Risperdal dream.  It just may not be the med she needs at this time.  Its all just really overwhelming. Overwhelming doesn't even cut it, its just plain evil to have to make these decisions for a 4 yr old.  Fuck schizophrenia and the meds that come along with it.  Its all a crock of shit.

End of rant.  I alluded last week that I would be going into my thoughts on homeschooling and modified school schedules this week.  I can't even go there today.  I'll address that next week when I have the mental energy...and Nixi's had her first week of school.  Who knows, could change my perspective completely.

So, be thinking of the Nix this week as she starts a new chapter with Teacher Mel.  Safi will begin the more stable school schedule, as this last week was a get to know the rules and friends kind of deal.  And, no matter where we are at the end of this coming week...psychotic as hell, stable, whatever...as long as no one is rocking back and forth in a fetal position in the corner of a room my kids are going to the circus!  Yep, you read that right.  The circus is in town and and this time we're doing it!  Emily is on board with her kids, Amanda's down for bringing Sophia...GAME ON!  We could hide in our house, insulate ourselves from the world for fear that anything and everything could tip the scales and send us tumbling uncontrollably down the rabbit hole....or we can live.  My kids are kids first.  Their diagnoses and challenges are a huge part of who they are but by no means the sum of the whole.  They've always wanted to go to the circus.  I've learned that in my house, and in life, there's never a "perfect time" and often not even a "good time" for new, potentially exciting and simultaneously terrifying experiences.  We can choose to stand on the edge of the cliff and stare into oblivion with fear and trepidation, or we can trust all of the supports that we have in place, hope for the best, and repel.  Next Sunday, my friends, we choose to repel!  We choose to LIVE!  Wish us luck!!

Sarah

New backpacks..........

Salt painting.....

I'll make this entry as brief as possible, as I have a good deal of prep to do for a meeting with Safi's new teacher tomorrow.

After a good week for Safi on the Zoloft we increased her dosage from 12.5 mg to a whole pill, 25 mg.  Monday can only be described as the day that rainbow unicorns danced on clouds made of cotton candy and marshmallow fluff.  It was freaking unbelievable.  In the morning Nixi put her through the paces, they were playing a game with their shoes...shoes were cars, tiny animal figurines were racing in them.  When it came time to clean up so that we could get ready to meet friends at the water fountains absolutely NOTHING could be right for Nixi.  She needed to put certain shoes away, Safi would say to her "Let's do teamwork, you can do one and I can do one."...that wasn't good enough..."Ok, you can put them both away and I'll put away these ones."....nope, now that was a problem..."If we do teamwork we can each do some, which ones do you want to do?"...back and forth, this and that, nothing was going to make it good...."UGH!  Ok, you just put away the ones you want and I'll do the rest."  Then she cheered Nixi on, telling her what a great job she was doing.  RAINBOW UNICORN!!  We met up with her friend Sophia and Emily's kids at the fountains.  Safi ran around, hand in hand, with Sophia laughing and having a wonderful time.  When things got dicey for a moment and it looked like she was going to crumble she put her head down, composed herself, and went her own way with a huge smile and continued to play until she could find a way to reengage with her friends.  COTTON CANDY, MARSHMALLOW FLUFF CLOUDS!  It was just unbelievable.  Breathtaking.  Not only tremendous increase in coping skills and adaptability, but massive leaps in the quality of her speech.

By Monday night I started noticing that she was pretty amped up.  She was still happy, coping well, but a little too intense, too rough, and way to fast.  She looked very ADHD, which is not the norm for Safi.  She woke up the next day, full pill, and again...too loud, too fast, disinhibited, extremely poor impulse control.  By Tuesday night, some behavioral issues....taking things too far in the name of fun, "poking the bear" with sister, typically developing kid stuff but on steroids.  She also had trouble sleeping and wet her bed during tablet time during the afternoon.  She woke early on Wednesday but gave her a full pill just to say we gave it a fair chance, but it was clear that 25 mg is just too high a dose for her.  She was still off the hook, being a smart aleck, and just generally being a butt...but still extremely social and anxiety reduced.  Poor kid also had another "accident", as Zoloft can cause urinary incontinence in children.  I called the psychiatrist and told him what was up and that I wanted to bring her back down to the 12.5mg.  He agreed.  On Thursday I had told the girls we would go to the water fountains.  Safi said to me,verbatim, "Mom, can I stay hom?  I'm sick of the fountains and I don't feel like going today."!!!!   As I  was texting to cancel the fountains with her friend Sophia's dad I heard Nixi yell.  Before I could open the patio door to see what had happened, Safi gave herself a time out for being not so nice to sister!  Temple Grandin, arguably one of the most famous "Autistics", found in her research of the use of SSRI's in folks living with Autism that because they appear to be extremely sensitive to medications they often need on 1/2 to 1/4 of what would be considered "therapeutic dose" for neurotypicals.  She also states that at the first sign of early morning wakening or insomnia to pull back to a lower dose.  Certainly appeared to bear true for Safi.  So, the medication has a half life of 24 hr, meaning in 24 hr after taking a 25mg dose you will have 12.5mg in your system.  So, Safi wont truly be back down to 12.5mg for about a week from the last 25mg pill....which lands squarely on the first day of school.  We have noticed her slowly coming down in energy over the weekend.  Impulse control much better, sleeping fine, no more "accidents", etc.  With that we have also noticed some of her exceptionally complete sentences becoming slightly fragmented again.  We have a psychiatry appointment tomorrow and I'm going to ask if after a month or so we are still seeing that decrease in the really great speech quality improvement if we can perhaps increase to 18.75mg (3/4 of a pill).  But we'll give it the full 6-8 weeks to see first.  

While Monday at the fountains was magical for Safi, not so much for the Nix.  She was ok until more kids started arriving, at which point she straddled my lap and shut down.  Periods of crying or screaming if I moved "wrong" or didn't have what item she felt would make the world right again.  From that day forward we have spent the week primarily at home or running errands and she seems to be able to tolerate that just fine and has had a pretty good week....I would even dare say the girls and I had a few stellar days by anyone's account!  She's still Nixi, and she still has schizophrenia, but her level of functioning and happiness is just better when she's at home or in the community with purpose and no social pressure.  I can understand now why many of the parents in my online support group homeschool or do severely modified school schedules, like 2 hr of "regular class", and hour in "special day class", then home.  More on this topic next week.  While it is a relief to see her have a somewhat better week, it is a bone jarring reality that she starts school August 12th and she may not be able to handle it.  I attempted to take her to a walk in clinic on Saturday to have a rash looked at while Safi was out doing things with dad.  Her anxiety level immediately increased and with that, her symptoms.  She wasn't sure if I was her mom, calling for me but then unable to answer if I was her mom when I asked.  She physically had a hard time making her body get out of the car.  We checked in and within a few minutes I chose to abort the mission.  It was obvious that she was not going to let the guy near her and I wasn't going to put her through that for a rash so we bid them a-do and headed home.  Her psychiatrist and I have been emailing back and forth all week to get this med change hammered out as its relatively complex and I have no desire to blow it and he's still out of the state.  I won't get into detail on titrating and such but we went with the addition of Cogentin and increase of Risperdal.  All week she's been getting the Cogentin with no Risperdal increase.  She appears to be tolerating the Cogentin wonderfully.  I have noted no side effects.  Last night was her first Risperdal increase by .125mg.  So she is now on a total of .50mg Risperdal and the original Cogentin dose of .5mg is now is split into two doses, am and pm, of .25mg.  After taking the Risperdal increase and the split dose of Cogentin and the 1mg of melatonin she has lawyas taken, she fell asleep during the second TV show before bed.  That has never happened so it was clearly med related and I'm thinking of cutting her melatonin back to .5mg.  A couple of hours after her morning dose of Cogentin she was yawning and by noon she was crabby and looking tired.  At this point we just wait and see.  She had two little crying jags as of this writing (2:45pm) and I'm inclined to think that this is more her body adjusting to the med changes as a whole, making her a little tired, etc. than to jump straight to akathisia...as that was much more extreme and immediately apparent.  But I'd be lying if I said I wasn't holding my breath.  Well, now its evening and despite a decent day, we were not able to escape slamming face first into the medication brick wall.  I think its just a matter of her body adjusting to the changes, I'm not heading for the phone just yet but it was a big meltdown.  Again, leaving her a weeping ball in my lap begging for her mom, confused, and not ok.  She started experiencing some paranoia while doing a craft, not wanting anyone to look at it, etc.  She also has this thing over the past few days where she tells Safi numerous times a day not to say the words "very own", regardless of whether she's saying them or not.  So, seems like the voices or the monsters have a hand in that annoyance.  Either way, it irritates to the point of becoming irrationally angered.  Safi, left confused and bewildered.  Meltdown ended, Safi was able to tell her how beautiful her craft was and life moves on.

Making back to school slide shows, meeting with Safi's new teacher tomorrow, and needing to schedule a meeting with Nixi's teacher.  Its back to school, baby.  Excited, anxious, scared, nauseous...me, that is.  The girls, at least Safi for sure, are PUMPED!!!  And that is WONDERFUL!  Be thinking of the Safi girl on Thursday morning when she puts on her special first day duds and gets ready to OWN the first grade!  

Sarah

This is what Schizophrenia and Autism looks like...salt painting!

This is the 200th blog post.  Wow.  When I think of the twists and turns our story has taken since that first post in January, 2010, I am overwhelmed.

This blog was started as a Christmas gift to Mike and my family, none of whom live terribly close, so that they could watch the girls grow up on a weekly basis...be a part of their lives, whether they be hours or states away.  Through Facebook and some other search engines, this blog has slowly been reaching more and more people.  Some are friends, or friends of friends, some are extended family, others I'm sure are here for the pure spectacle factor.  No matter what the reason,  if it sheds a light on neuro diversity and breaks some stigmas along the way...I am content.  Feel free to slow down and rubberneck.....I probably wont flip you the bird, at least not if I'm in a good mood.

For those of you who were here for the first entry, I cannot begin to imagine how you have felt over the past few years.  I imagine somewhat helpless, maybe a little confused, perhaps even sad.  But I also hope that you've found tremendous joy in watching the girls grow up, change, struggle...and overcome.  I thank you from the bottom of my heart for reading every week(and printing every blog entry Grandpa Seifert), even when you know it may be painful or a bummer.  But we are nowhere near the end of this story.  I love a great twist ending and I believe the girls may just pull one out in the end.....we shall see!

With that, the 200th post.....


This week we ended our third summer of the grass roots summer school at the park.  The girls were extremely excited for the graduation and party...so much so that by the time it actually arrived, crash and burn.  They had woken up early and could do nothing but talk about the day's events...for nearly three hours.  Reading books, singing, story time all went well...then the pirate party activities.  I decided to tell the girls about the activities the night before but did not show them any pictures because, frankly, I had none.  These were made up games.  Never underestimate the power of visual supports...EVER.  We brought out a huge sand bin for a treasure dig, pirate coins for a coin toss, and good old duct tape for walking the plank.  It was more than Safi could bear.  I put her weighted vest on prior to the transition from story time to the activities...still no good.  She became extremely overwhelmed, crying and frantically looking for treasure then changing her mind on what treasure she wanted.  It was horrible, one of the moments where she is so internally off that nothing externally is going to be right...and it wasn't.  The other kids, used to this by now, enjoyed themselves and had a blast.  By the time graduation was over, cupcakes eaten, and swimsuits for the fountains on Safi started to come out of it....only to pass the meltdown torch to Nixi.  We got to the fountains and poor kid just lost it.  Luckily, we were able to get through it and do our goodbye song for the last time this summer with no tears.  And if you ask the girls if they enjoyed the last day they will tell you it was the best.  That's good enough for me.

Safi had her appointment with the psychiatrist that I have been seeing.  It went surprisingly well.  Nixi held it together for the most part, only losing at the end when he thought it would be a good idea to do a magic trick with a little ball he had given each of the girls.  Bad move.  Nonetheless, it was a good appointment.  He has put her on a low dose of Zoloft for the anxiety and she has had minimal side effects.  Tummy ache, generally feeling a little crappy here and there, but nothing that doesn't pass pretty quickly and I'm increasing her dose to the end goal very slowly.  While it really needs a few weeks to get a good baseline going, I am noticing that she is coping with consequences better and I even overheard her apologize to her sister for freaking her out during play and asking very nicely if she would come back to play.  Saying "I won't do it again.":  This is HUGE.  Usually, she would just cry and whine that Nixi wasn't doing what she wanted her to do.  I'm extremely excited for her.  I think this may just be what she needs to help with some of her social difficulties.  Perfect timing with 1st grade around the corner.

Nixi.  Oh, Nixi.  I don't have the emotional energy to give a play by play but she continues to get worse.  Her illness, at this point, bears more weight with her than reality.  She took a plastic knife from our take out dinner and hid it under her pillow.  Denied it when casually asked about it then stated, "Do you know why I have that...to get the bad guys."  So, not only is she hiding her symptoms, but she also feels that she needs to protect herself because we can't.  She knows we don't see, hear, or "know" the things that she does.  She is totally alone.  She also has completely lost insight.  If I can see that her symptoms are bothering her I can usually ask her if her brain is bothering her and she'll say "yes."  For the first time, I asked her if her brain was bothering her and she got angry, growling "NO!".  The auditory hallucinations still tell her to "destroy" me, and for the past two night she isn't sure that I'm her mom.  She stands there, screaming and crying "I want my mama", and when I say "I'm right here.  Am I your mama?", she screams back in total despair "I DON'T KNOW!".  Her appointment up at Davis was cancelled due to her psychiatrist testifying in a trial that has been extended.  Worst timing ever.  Friday we had a phone appointment.

His first option, which he offered gently, was to hospitalize her on an acute psychiatric floor.  He already knew the answer, but asked if we would consider even a 24 hour stay.  No, we wont.  Not now.  She's too little.  Not that there aren't tremendous benefits from psychiatric hospitalization.  The big one for psychosis is that they can try different meds at higher doses than would be feasible on an outpatient basis, look for side effects and counter them quickly if the arise, and switch meds that aren't working quickly.  That's really wonderful, and in many cases means much quicker stabilization for the patient.  But a 24 hr admit, to me, is like a gateway drug.  What can they really do in 24 hr other than tell you that they need more time to observe, try different meds, etc.  Dr. Soulier would never try to trick us or doing anything nefarious, I know he's also looking to have increased documentation for her future.  The more documentation from varying sources, the greater the treatment opportunities, Social Security opportunities, etc.  But he has children Safi and Nixi's age so he "gets" it, and didn't push any further.  Instead, he said, "I think we've been really worried about what these meds will do to her body, and we should be, but I think the time has come that where we need to put her mind before her body."  He's right.

So, he has given us the following options to mull over and will be calling on Monday for our decision;

1) Add Cogentin to combat the akathisia she experiences with Risperdal at a higher dose.  Think Benadryl for an allergic reaction.  His only concern with that is that the Cogentin could worsen her mood symptoms.

2) Add a small dose of Prozac to help with her mood symptoms and negative thinking...but will do nothing to touch the psychosis.

3) Change meds to Zyprexa or Seroquel, though Seroquel is chemically very similar to Risperdal so it wouldn't be his first choice.

He ended by saying that we may need to start thinking about combinations of meds.  It was a sobering conversation.  In previous posts I have talked about prognosis being much better when a child responds well to their first anitpsychotic.  It looks like Nixi isn't going to be one of the lucky ones.  She's going to be one of the one's that likely needs multiple medications, or at least will be changing meds more than we might have hoped as she continues to grow.  So disappointing.  Zyprexa scares me due to the serious weight gain often seen in people, kids especially, taking it.  That may sound like a vanity issue but for me its a physical, visual reminder that I'm losing my child to this illness.  I can get over that, but I won't lie and say that it would be easy.  It also carries the same risks of diabetes, side effects, etc, of Risperdal but at a slightly higher rate due to increase in hunger/weight gain.  It also has a higher incidence of cardiovascular side effects, particularly in children.  Its just a gnarly drug.

I think we've decided to go with the Cogentin/Risperdal combo first, as Dr. Soulier said we would know within a matter of days if it was going to work or not.  From there, I suppose Zyprexa.  What's scary is that he said he wouldn't consider some of the other anitpsychotics because they're less potent.  So, of course, my mind goes to what if the combo doesn't work, and the Zyprexa is a bomb, then we're left with something like Clozaril and that scares the shit out of me.  First, because it would be confirmation that Nixi has medication resistant Schizophrenia.  Very common in Childhood Onset Schizophrenia.  Second, because it is a drug that can cause agranulocytosis, a condition that involves a dangerous decrease in white blood cells that can cause death.  It carries four other "black box" warnings that I wont go into because we're not there yet.  I'm just saying, that's where this all takes my brain.

So, that's where we're at.  The girls had a nice weekend, swimming in the pool with dad, having a tea party, and hanging around the house Saturday (right now Nixi does significantly better at home than the outside world), and hitting the water fountains and McDonald's with me on Sunday.  Safi was bummed about not getting to go to a hotel, and Nixi was afraid this meant Dr. Soulier wasn't going to help her.  I assured both that we would go to a hotel in the future and that on Monday Dr. Soulier would call and we start to get this all figured out.  That was good enough for them!

Sarah

While the girls are SO much more than their diagnoses...there's a dad on Facebook that always posts pictures of his son just being a kid with the caption "This is what Autism looks like" and I love that idea.  Paradoxically breaks the stigma by using it...brilliant!  In that spirit.......

Tired.  Mike and I are both really tired.  He, with his new job and then coming home to the chaos as of late.  Me, with the decompensation of Nixi and the slight regressions of Safi.

Trying to keep things afloat can be absolutely draining.  This week in the online support group there was a flurry of medication posts.....and they WERE NOT about our children.  They were posts from all of the parents about the medications they are on for anxiety, depression, insomnia, etc.  There was talk of "if I had someone to watch my kids I would check myself into the psych unit", "teetering on suicide", "holding on by a thread".  This is the weight of living this life.  And, while some of those statements may seem disturbing to  you, I am always struck by the devotion of these parents.

Even when in the absolute pit of despair, they stay put and muscle on because there's no one to watch their kids.  Wrap you brain around that one for a minute.  Sure, there's those passing moments of resentment we all have...because if our kids were doing well we wouldn't be in any emotional, spiritual, and sometimes financial pit.  They say a parent is only as happy as they're least happy child....while cliche's annoy me, and they do...this one could not be more spot on.  

With Nixi slipping away and Safi struggling here and there its been a draining past two weeks.  This is the absolute worst time for this because its almost time for back to school.  Back to school for most families means buying clothes, backpacks, and school supplies.  For us it means setting up parent/teacher meetings prior to the first day, writing "cliff notes" on each girl to give to their teachers, taking pictures of everything from the route to school to the classroom door, classroom, bathroom, recess area, etc for a slide show to get them ready.  It means a lot of work and being tired just isn't an option.

Yet, I can't shake this.  I want to.  I try to.  But I'm struggling to.  Tomorrow I take Safi to the psychiatrist that I am seeing for the first time to talk about getting her on a low dose antidepressant to help with overall anxiety so common with Autism.  Our appointment is at 8am.  Nixi has to go with us.  Her current prominent, though not new, delusional system is that everyone dislikes her, is uninterested in her, thinks she's not special, etc.  So, if someone compliments someone else, talks to someone else, etc. that means that they hate her, want to harm her, or something exceptionally negative.  An example from summer school.  Our little friend Zoey saw a girl she knew from somewhere else and said, "I know her."  Nixi began crying hysterically, loudly, saying "She doesn't know me, she said I'm not her friend."  Of course this never happened, but for Nixi it is her reality.  Anytime I say anything off the cuff like "Was that [food] good?" to Safi, regardless of the good mood everyone is in Nixi will scream and cry hysterically, "You don't like my food.  You don't like me."  This is a morph of her earlier delusions that people were angry with her all the time.  Nonetheless, it will be difficult to have her at the appointment tomorrow because the appointment will be about Safi.  When she is reminded of this she will scream and become hysterical that the doctor doesn't like her, etc.  I can already hear it now.  But there is no choice.  She must go with us.  Just hoping we can get through it and get Safi squared away.

We went to Boingo's, and indoor bounce house place mid week.  We lasted 30 minutes.  Safi had a blast, within 5 minutes Nixi was in my lap in a fetal position bouncing between crying, rocking back and forth, and screaming that kids were being mean to her, didn't like her, sister woldn't play with her, etc.  It was really sad but lately, its just the way life is for her.

Nixi is excited to see Dr. Soulier, her psychiatrist.  She told her friend Logan today that he makes tries to make the monsters go away.  Tries.  But they never do.  Tonight her and I were alone in the car and she told me that they were arguing today and she yelled at them to stop...they didn't.  They never do.  She also confessed this week that there are "monsters" and "normal" voices doing a running commentary about her life.

Mike was doing ICC's at work, a process by which inmates are classified/housing assigned/penalties imposed, etc.  One of the inmates was schizophrenic, trying to do the right thing and take his meds, but schizophrenic to the core.  It hit Mike really hard.  I know I could never work in forensics again...EVER.  Do a lot of inmates malinger, or fake it, yes...but you have no idea the numbers of truly mentally ill housed in our correctional institutions.  NO IDEA.  and no idea how hard it is for them to get their basic mental health care needs met...and I'm speaking as someone who tried and admit to failing miserably.  Hat's off to Mike.  I can't imagine what that ICC must have felt like in soul.

Thursday  and Friday are the last days of our grass roots summer school.  Mike will be there for the graduation on Friday and I'm hoping that enhances the fun, as the change of him being there could just as easily throw off the delicate balance needed these days.  Sunday we head up to Davis.  We'll stop at a little zoo in Lodi on the way. Trying to tire the girls out so when we arrive at Davis and the hotel Safi actually sleeps. This will be her first night in a hotel and while she is super excited, she's super anxious about it, too.  

On a more positive note.  Nixi has been diaper free and using the bathroom for nearly a month now, something Mike and I doubted would ever happen.  I've also moved her back into the room with Safi and I as the mornings with Mike getting up early for work was too disruptive for us all.  So far its gone extremely well.  That's huge.  Safi also told me that she wants to wear her weighted vest to school on the first day.  That's amazing and awesome that she knows she'll need it and requested it.  Even more awesome, her one from last year still fits so we don't have to shell out another $75 for a new one just yet!  And we went to a movie, Turbo, today with Emily and her crew...a bonafide, unaltered, regular movie!  Neither girls needed headphones and they had a blast, of course Nixi went south mid way and thereafter.  But in the first twenty minutes she looked at me and said "This is my best time EVER", grinning ear to ear.  And Safi could be glimpsed getting funky in her seat during some of the music scenes.  Three adults and 6 kids from 5 months to 7 years....some popcorn spills, flip flop lost and found, and a a giant bucket of popcorn refilled twice!  A year ago I would have told you it would never happen....today it happened and it was rad.

Always some good with the tough, even if sometimes we're too damn tired to see it or remember it when it comes time to write the blog.

That's all I got in me tonight.  Make sure to check back next week to see how everyone's psychiatry appointments went, our first hotel trip as a family, and the end of another summer school.

Sarah

P.S.  Just wanted to get this out there.  After I write these blogs I do not proofread them.  I hit publish and don't generally read them for a few days...if not weeks.  I spell check, but that's it.  So, sorry for any confusing parts...if you get the gist, I'm good with that.

Kind of an old school video but really relevant as this woman seems to describe experiencing some of what Nixi does when she was a child.  Also, slightly comforting for her to hear her say that she thinks maybe having schizophrenia since childhood was better than developing it later in life like most.

A little old, but good...this is a psychosis simulation produced by Janssen Pharmaceutical.  Inicidentally, the maker of Nixi's Risperidal.  I like that it covers the gamut of psychotic experiences... 

As promised, a little catch up from a very eventful 4th of July week.  No lead in's, no fluff, I'm just going to get straight to it.

The Wednesday before the 4th of July we had a play date with the girls' friend Sophia at ImagineU interactive children's museum.  You may recall we've been there before, actually our first play date with Sophia was there last December.  It ended that time in a massive meltdown from both girls over a green dress up dress.  Princess Tiana, Safi's favorite princess, wears a green dress...Nixi wasn't giving it up, it was horrible.  So, this time we arrived a little early and the first thing Safi did was put on that green dress...

She was quite pleased with herself!  Sophia arrived and the girls had a great time.  

I've noticed for some time now that Nixi's got about an hour for unstructured activities before she starts to go south.  One of the young men who's vlogs (video blog) I've been following gave an amazing description of what its like to have schizophrenia....where hallucinations and delusions, for him and perhaps most, seem to come from.  He said that he and others he knows like him read too much into things, focus too long on irrelevant stimuli in their environment.  For example, many of us can lay on our backs and look for shapes in the clouds.  Maybe we see a dog, a dragon, a seahorse...then we move on.  We are in control of these flights of fancy, we are choosing to expand our reality for a moment for our own personal enjoyment.  Many people with schizophrenia are unable to do this because it is not volitional.  This is called perseveration, to quite literally get stuck in a thought, mood, or experience well past its relevance and/or usefulness.   If you recall, a major deficit in those with schizophrenia is the inability to selectively attend...or choose what in the environment should get the most attention.  For example, most of us can tune out the noise of a fan in favor of attending to the voice of a teacher.  We can walk through a supermarket and perhaps glance at the pattern on the floor but then we can go on our way and get our shopping done.  We can take a walk with a friend and attend to the conversation regardless of the noise of traffic or nature.  We can decide what is relevant stimuli and what is not depending on the situation.  For many with schizophrenia this is not possible and so, the environment is constantly being misinterpreted.  Here are a few concrete examples to really drive the point home....

 The above shadow cast onto a garage door by a tree looks remarkably like a face.

Look closely at this tree and you will note that it looks like a woman.

Now, those of us not living with a serious mental illness such as schizophrenia can look at those pictures and enjoy how amazing nature, shadows, and the world around us can be.  But for those like the young man I'm following and like Nixi, these things can be far more sinister.  Imagine, just for a moment, if that shadow face began talking to you...or the tree woman began to move toward you.  What if they were telepathically sending you messages of controlling your thoughts?  Nixi experiences these types of things constantly.  The home security system box in the master bedroom that always has been a huge point of fear for her.  It constantly has small red lights at the top and a small green one in the middle.  This box will forever be a red eyed monster.  I've covered it to no avail...because it is still there and, for Nixi, it is a monster.

Clinically we call these illusions, or sensory distortions.  They are different from hallucinations in that they are misinterpretations of true stimuli.  Hallucinations are distortions that happen in the absence of stimuli.  We have known that, for Nixi, its these constant misinterpretations of true stimuli that feed her delusions and some of her hallucinations.  So, even the "real" world and true sounds, sights, sensations, etc., betray Nixi and others like her 

Back to ImagineU.  It was getting past the hour mark and Nixi was starting to get very irritable and testy.  She began misinterpreting other's intentions and was becoming more and more paranoid.  I gave the girls the countdown to prepare them for leaving and Nixi put on a dress up dress.  That was fine, we had 5 minutes left.  Suddenly, behind my back I hear her start to scream and as I turned my head and our eyes met I could see that she was in total fear and panic.  I have no idea what tipped it off but she was screaming about people looking at her, a pretty common theme when she's stressed...cannot tolerate people looking at her.  Their "looks" suddenly take on meanings like that they want to hurt her, hate her, are laughing at her, etc.  She whizzed by me and I managed to get an arm around her waist.  She fought me, screaming and crying, she fought me hard.  She was no longer seeing people as people, only as potential threats and at that moment in time I was one of them.  An elderly docent started coming towards us, as this was quite a scene.  I evenly but firmly said, "We are not okay but we will be if you give us space."  She continued to advance as Nixi was fighting me and I was becoming very aware that if my grasp slipped and someone touched her or got too close, she would hurt them.  I repeated the mantra and the lady still advanced...clearly thinking this was maybe an Autism issue and suggesting an other area of the museum was quieter..but still physically advancing.  I finally said, for the first time in a public place, "My daughter has a mental illness and I need you to move back NOW!"  She did, and I never lost my grip on Nixi.  It was so horribly sad, this weeping ball of  a child in this big, lovely dress up gown finally looking at me and seeing me.  Now it was her who had me in a death grip.  I managed to get the dress off of her and gather Safi up and make it out to the car with them both.  Luckily, or sadly, Safi is used to this by now so her enjoyment of the day wasn't tarnished.  But my Nixi.  It was the first time that I actually believed that if I hadn't had a physical grip on her and anyone would have touched her, looked at her, or approached her that she would have hurt someone.  Granted, it would have been to protect herself, but it broke my heart and scared me simultaneously.  

I do not know what will happen next year in school if she gets in one of these states.  The teacher and aid are used to dealing with children with autism who at times can be quite physical so I'm fairly certain they can keep everyone relatively safe.  But I do know what will happen if this happens when Nixi is an adult.  It will get her police contact and at best shot with a taser and at worst with a bullet.  

For the past few weeks her disorganized thinking has been creeping back slowly.  She bit her sister (who politely said, "You don't bit me.") and when asked why said in complete seriousness that she was hungry.  I asked her if we eat people and she replied, "No, cats."  I asked her one last time why she bit her sister, "I said I was hungry".  She goes from being manic and euphoric to borderline catatonic for two hours.  She is not napping.  Next year her class will not allow for nap time because its the later session.  Looks like that may be a problem, as we had anticipated but hoped we would be wrong.  We are headed up to Davis, the whole family, at the end of the month.  We have to be able to do better than this by her.  

Safi continues to struggle with the summer school changes and clearly the weight of an unstable Nixi has to be affecting her.  She hit herself in the head the other day, and tried to hit me...behaviors I haven't seen from her since the first week of kindergarten and then two years before that.  We need to focus on getting her back to a good place because this is scary just three weeks away from the start of the new school year.

A lot going on.  Really heavy.

Sarah