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

Hey, baby..its the 4th of July...

According to the National Library of Medicine, "Schizophrenia is a mental disorder that makes it hard to: Tell the difference between what is real and what is not real; Think clearly; Have normal emotional responses; Act normally in social situations."  A pretty straight forward, if not extremely simplified, definition.

The National Institute of Mental Health states that schizophrenia is caused by a mixture of the following; genetics, environment (in this context environment means exposure to viruses or malnutrition during pregnancy, problems during birth, different brain chemistry and structure.

Last week I said that I would get back to the whole "acceptance" part of being a parent of a seriously mentally ill child, SMI as they are referred to often.  I don't know that acceptance is really at the core of my issue.  I don't know that its what keeps me up at night.  Nixi has schizophrenia, at this point I am absolutely certain of this.  What keeps me up at night is the fact that I am NOT a neuro psychologist.  I am not even a cognitive behavioral psychologist.  I am a psychodynamic psychologist.  What this means is that I conceptualize pathology from a standpoint of a person's ego development in relation to their world.  Its easier if I just give you an example.

Nixi is 4, yet she has voices that tell her to that she doesn't deserve to live and that she must be die.  From other conceptual frameworks in psychology this would be considered par for the course and somewhat a hallmark of illness.  Yes, it is.  But its not like these are separate entities from another time and space, these voices come from her head.  And as such, from my chosen theoretical orientation, I stay awake at night trying to figure out where we damaged her...rejected her...made her feel worthless...failed her...in an attempt to come up with a way to fix those wounds and perhaps make her illness a little less savage.  The command hallucinations almost discretely focused at me...how have I hurt her psyche so deeply that it has turned against me so violently?  While I absolutely do not believe that we caused Nixi's schizophrenia, as I believe that it is a medical condition involving the brain, i certainly grapple with the nature in which her symptoms manifest.  So, folks, that's what keeps me up at night watching videos and reading memoirs.  The hope that I can gain insight into my and the rest of our roles that may in some ways shape this illness for her.  I'd say maybe 20% masochist, 80% optimistic clinician...because if you can find where the psyche shattered you have a chance at putting it back together.  Again, to clarify, I am not trying to find a way to "undo" schizophrenia.  That's not going to happen.  I'm just trying to find a way to mitigate its effects on Nixi's life.

A perfect lead in to a wonderfully strange, scary, hopeful, sad, and lovely encounter at Costco.  Took the girls for a cheap slice of pizza and the always coveted lemonade with a shot of soda before hitting the pet shop.  We got our food and found a large, somewhat empty table.  Within moment a man in his late 20's sat down next to Safi and looked at my tattoos.  The moment our eyes met I instantly knew that he was actively psychotic.  This has nothing to do with my experience of living with Nix but everything to do with my years of clinical experience.  When you work in the field you can spot it in an instant.  He started asking me questions about my tattoos.  As we spoke I noticed a few other people sit at his end of the table and it was readily apparent that they were all from either a Board and Care facility or a day program.  Two ladies on the end vibed Autism or some developmental delay, another man mentally ill and perhaps developmentally delayed, another woman appearing mentally ill.  So, after explaining my neck tattoo I said "These are my daughters, Safi has autism and Nixi has schizophrenia."  Instantly the young guy sitting next to Safi says, "ME TOO!  Ive got paranoid schizophrenia!"  I tell him Nixi is on Risperdal..."That's what I'm on, and Cogentin for the side effects because they're really bad...but I don't think my meds are really working very good right now."  The young guys proceeds to ask me tons of questions about Nixi and I ask him questions like if he had symptoms when he was a kid.  He says no, but that he was in special education.  As I talk to him, other than the hugely dilated eyes and odd cadence of his speech I don't notice any obvious cognitive deficits so I assume he may have had the insidious onset we see in children and it just wasn't recognized as the prodromal stage of schizophrenia.  Then he begins to ask Nixi questions about her hallucinations.  When she says they're monsters he replies, "Oh, man...scary."  The gentleman sitting nearest to me, who I couldn't quite place, says ever so politely and eloquently "Do you mind if I ask how often she is hallucinating?"  Stunned, but ready to roll because this experience is amazing, I tell him that her doctor estimates that she likely hallucinates up to 95% of her waking hours.  He immediately looks deeply touched and deeply saddened.  He says, "I am so very sorry."  His speech slurred, slow..hands shaking and rolling...older than the young man who started our conversation and very obviously ravaged by the effects of years on older generation anti psychotics.  It is he, however, who is the most stable of the group.  Nixi stands, as I had tried giving her a quarter tab more of the Risperdal the night before to see if she could tolerate a small increase and indeed she could not..akathisia was back and she needed to be moving.  As she talked to the young man and shifted her weight from foot to foot the woman sitting next to the young man says to her "Makes you want to crawl outta your skin, doesn't it?"  Nixi replies, "YES!"  I tell them that she is going to the psychiatrist this month for medication adjustment and they all nod their heads, young guys saying he needs his adjusted to.  Our meal comes to a close and as we shake hands with each person at the table and thank them for their company, the older gentleman says to Nixi, "You're going to be okay, try not to be too scared".  It was an amazing lunch.  The ease with which Nixi spoke to these people and answered their questions without the hesitation we usually get was amazing.  Big eye opener that we need to get Nixi more exposure to people living her life experience.

There's more to report but I'm completely drained from a busy, eventful week so I'll leave it at that and play catch up next week.

Sarah

Summer school fun.....

Library pirate party.....

New MEGA pool float!

We're in the midst of a massive heat wave, literally and figuratively.  Temps have been 102 - 108 and still climbing.  Feels like we're in a pressure cooker.

We tried watching our friends John and Amanda's daughter, the girls' best bud, Sophia this week.  She came home early from up North and will get to be with us for summer school the rest of the summer.  This changed our normal routine and as I talked about last week, change just doesn't suit us at this time.  Safi remains much more amenable to change but Nixi is just left reeling.  While it was rough, brutal at times, there were some great moments.  So much so that tonight Safi decided to draw a picture.  She generally draws pictures of her family.  Tonight, "I'm gonna draw a picture of Safi, Nixi, Sophia, Mommy, and Daddy."  While she struggled to find her voice when it was just her, Nixi, and Sophia....Sophia is her family.  I am proud that she has learned through our incredibly strong and devoted friendships that family can be of the blood or of the heart.  We were a little too ambitious, hoping we could have her here 3 or 4 days a week.  That's okay.  We will still have Sophia on Thursdays and Fridays, our summer school days, and hopefully here and there when we can.  I am grateful that we have amazing friends who trust us with their most treasured little girl and understand how my most treasured girls function....and don't.  I have every belief that this summer will shape up to be an amazing learning experience for all of our girls.  And that's priceless.  That's the kind of real life experience and practice that no school, ABA, or therapist can offer.  These are the experiences that help shape my children's world perspective.  These are the experiences that round them out and make them better able to live in the neurotypical world we all take for granted.  This is, really, what its all about.

The downside, Nixi is really struggling.  During the week she was actively screaming, crying, and all around out of sorts.  The weekend was much better but her focus and attention are gone.  While she may not be screaming and losing control at the moment, she is in a world of her own.  When we need her to be in ours, she becomes irritated and mean.  Then she becomes profusely apologetic and remorseful, crying and clingy.  I'm calling UC Davis tomorrow to book and appointment for her in July.  We've got to figure out this med issue.  We've got to get something somewhat stable before school starts in August.

I went to see a psychiatrist for myself on Friday.  I'm always tired, far more irritable than I'd like to be, and just all around drained.  I went there thinking I'd be put on an antidepressant, though I know that I do not have many of the telltale markers of depression.  The guy was nice enough, somewhat cocky and a little annoying, but the content of what he said was sound even if his delivery made me want to tear into him. He's prescribed me Tranxene for anxiety.  He believes that my crappy sleep is leaving me "bankrupt" and that the girls are making withdrawals that I don't haev.  Makes sense.  I haven't had a normal, good, full night's sleep in over 6 years...since mid way through my pregnancy with Safi.  If the Tranxene does nothing to help and/or I start feeling depressed he'll take me off of it and put me on an antidepressant.  That seemed like a good plan to me until this morning.  I took my first dose on Friday night and slept horribly.  Usually I take melatonin and benadryl to get to sleep at night and I didn't take those, wanting to give the Tranxene a fair shot.  Sleep was miserable.  Last night I couldn't fall asleep and started to have a mini panic attack because I couldn't fall asleep so I increased my dose (as was ok'ed by the doc) and I got some rest.  This morning Nixi was reeling from the week's excitement.  By 9am I was feeling drained.  Unfortunately, that means how I'm feeling is likely situational and an antidepressant would not be of much help.  So, its possible that its the Tranxene or nothing.  The reality is, this is just the way our life is.  Elizabeth Kubler-Ross coined the "5 stages of grief" theory; denial, anger, bargaining, depression, acceptance.  We all know that I was a little late to the "acceptance" party, perhaps I've still yet to make my RSVP.  More on that next week.

All in all it was an okay week.  We all made it through and that's what's important.  We got to take all of the kids to a pirate party at the library on Saturday and on Sunday we went out and got some cool pool toys.  Its horrifically hot and the 4th of July will be no exception.  Here's to a hot temps and cool heads for the coming week.

Sarah

Summer school balloon rockets.....

Pirate fun!

Messy Summer School Fun........

Change...the main theme in the Seifert house this week.  Recuperating from old changes changes, excitement about new changes, and a mix of all of the emotions about the little changes we all experience everyday.

Since my mom's visit Nixi has been extremely psychotic.  While she is on anti psychotic medication, with increased stress you have an increase in symptoms...medicated or not.  Because she was not tolerating the Risperdal at an increased dosage we are unable to do what many with chronic mental illness do in preparation for stressful events...temporary med adjustments.  What we've read. and since come to know firsthand is that those living with schizophrenia don't do well with excitement, good or bad, they do best somewhere right in the middle.  Today Mike and I took the girls to a park in Visalia that they love.  The water feature was turned on and the girls got to play in the fountain.  Initially it was just Safi, Nixi, and one other child.  We watched Nixi create a game of running through the fountains in a pattern.  It was a very controlled, organized venture and she was enjoying herself immensely.  Over the following 15 minutes more kids arrived and with each additional body you could see Nixi become more and more disorganized.  Her voice getting higher in pitch, her movements becoming jerky and unpredictable, her facial expression changing and mood changing...anxiety.  Just as soon as the kids came, they left one by one to talk to a parent, stake a claim with their towels on the grass, grab a sibling.  With the removal of each child we watched Nixi become more organized, quieter, happier.  We literally watched the effects of neutral, excitement, and back to neutral on our child's brain in the span of 20 minutes.  It was fascinating and discouraging all at the same time.  It was a concrete example of why things like visits, parties, school, and life pose such enormous challenges for Nix.  Eye opener.  As long as we don't have this medication thing totally under control we really are going to have to do everything we can to keep Nixi's life neutral.  And even with the perfect med regimen we are going to have to be really vigilant about foreseeing deviation from neutral and being pharmaceutically proactive.  As for this week, she's been hallucinating much more.  A creepy black cat, wolves howling outside her window, monsters telling her to run away from her family.  Delusional, asking me if I know her real name.  I said no and asked her what it was, "Angel."  I asked her who calls her that and she said "Mommy and Safi."  We, of course, do not.  I asked her if my mouth moves when I call her that, "No."  So, now we know that some of her voices are that of mine and her sister's.  Voices saying mean things about me, so mean that she wouldn't tell me what they were saying.  Couple the secrecy with sleeping less and eating less...all bad signs, means she's more active in her world than ours.  By Thursday afternoon she was deeply involved in her world and difficult to engage.  We have also realized, though I have no idea why its taken us this long, that the constant scratching of her knees/legs and mutilating of her hands/palms are actually tactile hallucinations.  I was watching YouTube videos of people with schizophrenia talking about their illness and symptoms and was startled by the massive number of comments left by people with tactile hallucinations of things crawling under their skin.  So I asked Nixi if the itching was on top of her skin or under it, she said under it and made a comment about "it" moving.  She is also asking to go to the hotel (UC Davis).  So, we are going to plan a trip up to the psychiatrist in July to discuss the meds.  As we saw before with the .25mg, the .375 mg is good for keeping her relatively stable at home but not so much out in the world.  She needs more support than the current dose is giving her.  

Safi had a very exciting dose of change this week.  Her friend Zachary attended summer school on Thursday and she was elated.  She acted like a complete goofball, showing off and just being a total spaz.  It was wonderful.  :)  Its just the best to see her excited and happy about life, let alone a buddy.  Really, really awesome.  While the finer points of social interaction remain elusive, I am struck by how at ease Safi is in the presence of others and with on the fly changes. She is probably the best in our family at rolling with change at the moment.  HA!  Never thought I would EVER in my lifetime believe that!  So rad.

Mike had his last day at Corcoran, the prison that he's worked for 25 and a half years, on Friday.  He promoted to Associate Warden and is transferring to another institution, his first day this Monday!  It is unbelievably exciting and wonderful.  But its change.  I don't know if he's anxious about it, if he were he'd never show it.  I'm extremely anxious about it.  Will his FMLA (Family Medical Leave Act...means he can't be penalized if he has to take time off due to crisis with one of the girls) transfer over or does he have to fill out the paper work again.  Will the new warden understand that some days he needs to stay home with one of the girls for whatever reason?  Will it be okay for him to take a day off in July so that we can go up to Davis as a family?  Will he get home later?  What's his new cell phone number in case I need to get hold of him?  Will this new institution understand that we aren't a typical family and sometimes that sometimes we need Mike more than they do?  Will they care?  We shall see.  Nonetheless, a really exciting time for Mike and we are just really proud of him.

Sarah

Pool party.....

Before giving an update on the girls' week I wanted to talk a little bit about Mike.  Its Father's Day, of course and it made me think that, while Mike and I talk an awful lot about the girls we don't often talk about each other's experience in raising them.

When Safi was a little, well before her autism diagnosis, every evening we used to have music time.  We'd play music that Mike and I liked and rock out with Safi.  There's a song by the band Cake, Mexico....I had a match/ But she had a lighter/ I had a flame/ But she had a fire/ I was bright/ But she was much brighter/ I was high/ But she was the sky.....  Mike used to come home from work, still in his undershirt and uniform pants, scoop Safi up off of the floor and twirl her around to that song.  We used to say that this would be the song for the father/daughter dance at her wedding.  Safi would giggle, it was really special.

Once Safi's delays caught up with her she was furious all of the time.  Furious that her little body couldn't keep up with her mind.  That's when we first took her to Regional Center for evaluation.  From then on everything changed.  Mike would come home from work, tired, frustrated, drained...and the music was gone.  I used to wait for the sound of the garage door to open so I could meet him in the driveway, often crying, to tell him about the latest horror of the day.  Safi was banging her head so hard that she was all bruised up, she screamed for 2 or more hours straight and didn't nap, she pulled out a chunk of my hair, I had to get on the ground and restrain her to keep her from hurting herself, the early intervention people aren't helping but seem to agitate her more, etc.  When he would walk through the door, regardless of whether the day had improved before his return, Safi would immediately meltdown.  The transition of him coming home from work would send her into a good 30 minute or more meltdown.

Nixi came along and it was more of the same with Safi for her first year of life.  Things didn't turn around for her until she was 3 and we stopped intensive ABA.  Nixi was this little ball of fear, anxiety, terror.  Everything startled her.  Everything overwhelmed her.  She startled at everything and never seemed to habituate to that which startled her.  I threw away all of my boots with a hard sole because of the clicking noise they made when I walked through the house.  Bathing terrified her.  After a bath she would scream and scream, not a pain scream but a fear scream.  Mike would have to hold her really tight and rock her extremely hard back and forth in a wrought iron spring chair we had....so hard that we broke two.  Only then would she stop.  And she would stop mid-scream and just go limp.  We would check to make sure she was breathing because it was always so sudden.  Other than that, there wasn't much that Mike could do to comfort Nixi because she would not allow it.  She wouldn't allow him to wear her in a carrier, she wouldn't just hang out with him or be walked around by him.  The first time she held her arms up to him for comfort when she was upset was when she was 18 months old.  He used to say to, "She hates my guts."  Of course, she did not, but I could understand why he felt that way.  It was so bad that there were times when I resented her for rejecting him because it was so baseless, and making me the only person who could take care of her was absolutely draining.  Draining, but not hurtful.

I cannot imagine what Mike's experience has been, and is, as a parent to these girls.  He seems to accept things much quicker than I.  He seems much less in denial.  Whenever we have to fill out questionnaires for evaluations of the girls I always ask him to do one separate from mine because more often than not he sees the girls more clearly than I do.  His information is often more valid and more helpful.  Though, on a day to day basis he often seems overly dramatic to me, catastrophizing, fatalistic.  But when I have those opportunities to take a step back and look at his answers compared to others who work with the girls several days a week and my answers, his match up with the unbiased reporters and I am always a horrible under reported.  I make excuses for things, or think of the rationale behind a behavior or symptom...if it makes sense to me, I give it a pass.  Mike sees things with such clarity that I can't begin to understand the depth of pain that must cause him.  Denial is functional.  While I don't engage in it intentionally, it does allow me to live with some measure of peace and/or hope.  Mike lives in reality.

I don't know how he does it day in and day out, always coming back for more.  Though, I have noticed that his rapid acceptance of the girls' reality seems to give him a peace that is far more enduring than my denial based peace.  He has the ability to move on.  Sure, he can get mired down in the sheer weight of this life we're leading...and he does.  But he also accepts that this is our life and its going to be our life forever and we either live it or we die.  I simultaneously admire and detest this quality.

For example, when we go to bed...he with Nixi and me and with Safi I believe he actually goes to sleep.  Sometimes I can hear him snoring away in the other room and I'm so envious that I explode.  I go into the bedroom that Safi and I share with my iPhone and my ear buds.  I research schizophrenia.  I've taken to watching YouTube videos made by those living with schizophrenia for additional insight.  They are amazing, by the way.  I used to do this with autism the first year or so that Safi was diagnosed.  I study current research, review scholarly books and memoirs and order them, I just can't shut off.

We need Mike, I need Mike.  He balances us out and anchors the ship.  I believe that he allows me to be the captain because he trusts that my education and experience makes me the most qualified person for the post...but without the anchor we would sink.  As the captain I am prone to wild fits of jerking the wheel this way and that in search of new lands and undiscovered treasures.  He keeps me from capsizing us all.  He takes the role with little thanks and little glory, though its quite possibly the most important role of all.  He will be the one to keep us steady so that we actually reach our destination.

It is my greatest wish that when we get there he will have the opportunity to see how very much he was and is loved by his girls.  That he is the magic, the silliness, and in many ways the heart of this operation.  It is my deepest desire that he will dance with his daughters at their graduation, marriage, or just around our living room again and feel as free as he did in what seems like decades ago.  That is my Father's Day wish for Mike this Father's Day and always.

Now, a brief update.  We started summer school, which was awesome!  Safi gets to go to a local school for Occupational Therapy on Tuesdays and she and Nixi had a blast hanging out with one of Safi's friends from speech, Zachary.  My mom came up for a visit that got off to a rocky start with Safi feeling left out and hurt but ended very well.  Nixi is currently extremely psychotic on the heels of the visit.  We've realized that her meds do a ton for her disorganized thinking, not so much for the hallucinations and delusions.  Yesterday voices were telling her to beat me up and to dunk her own head under the water in the pool.  I'll talk to the psychiatrist tomorrow.

Summer school fun....

Nana visit......

Rockin' fun OT.......

Sarah