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

Safi had her last day of kindergarten on Tuesday.  I got to go and be one of the mom helpers for their activity day and it was a blast.  They did bubbles, the local fire station put on a demo, parachute play, dancing, sponge relay, beach balls, lots of kindergarten fun!  Safi had a great time.  Unfortunately I had to leave after the activities to be with Nixi so Mike could go to work and Safi told me later that she missed me at her party.  Still, so happy that I got to be there for half of the day.  We are so unbelievably proud that of her.  She met all of the typically developing academic markers, even excelling in some areas.  They had all of the kids make a book about themselves and on the page where they say something that they "got good" in, she said she got good at playing with friends.  That beats the academic stuff any day, that SHE was proud of herself and felt she did a good job of making and playing with friends.  She's such an amazing person.

We spent the first day of summer vacation picking peaches and apricots at J&K Farley Farms with Emily and the kids.  It was gorgeous.  We snacked and played under the huge walnut trees and picked some great fruit.  The kids had a blast seeing where their fruit comes from and being active participants in its harvest...the cool swing set and petting zoo didn't hurt, either!  Great way to ring in summer.

Thursday we had a big send off dinner for Safi's best bud, Sophia, who is going up north for the summer.  It was a great time but we're going to miss her so much.  Bittersweet.  August can't come quick enough!

Friday was Dreamnight at the Zoo.  It was hot, like 104 degrees hot but we had an amazing time.  We got to see everything we wanted to see and do everything we wanted to do.  It seemed a little less crowded this year but I saw a number of children and adults there with developmental disabilities and that made me feel really good.  Often times those with "invisible" disabilities are left out of these types of functions but this year that was definitely not the case.  The girls have been on a Fairy kick lately and it was totally magical when they turned a corner and saw Tinkerbell and two of her fairy friends.  They took pictures with them and Nixi showed them her "mama's hair horse", much to their horror.  It was really great and both girls did really well.  By the end Nixi was starting to unravel but no major meltdowns from either.  Total success!

On Saturday evening Mike was giving Safi a bath and I was hanging out with Nixi on the couch.  I asked her, "How are you doing?" and this is what she said:

Nixi: My brain is misbehaving, letting monsters take me away.

I can't tell you, it's a secret.

It wants to get it out of my head, my brain. 

ME: Why?

Nixi: Because it wants to make me dead.

It says "Go get mommy"

ME: What does it want you to do with mommy.

Make her dead, and I say no.

ME: Does it tell you how to do that?

Nixi: Yeah, like take your mom to jail.
They want me to cook you.

ME: Sometimes or all the time?

Nixi: All the time.  (Then, as if we had just been talking about what she wanted for dinner..)Can you help me find my pearl?

So, it has become apparent that I am not as far ahead of this illness as I had believed I was a week ago when I was so excited about making a preemptive strike with the social story book.  I'm still making the book because I think it necessary regardless, but what a let down.  After our talk we began looking for her pearl and she said, "Are you crying?".  I said, "No...yes, yes I am.  It must be very scary for you to hear those things and I'm just very sorry that you have to."  She ran up and grabbed me around the waist and gave me a huge hug...then asked me to keep looking for her pearl.  And that was that.  I don't know what's more gut wrenching, the fact that she hears these horrible things or the fact that it rolls off of her because it is her norm.  I have a phone appointment with the psychiatrist next week and I'll tell him all of this and see what he wants to do.  Again we are faced with the possibility that Risperdal just isn't the right medication for her at this time.

I posted this conversation to the online support group that I'm in.  Within minutes I had my first response from a mother of a daughter with paranoid schizophrenia.  She, too, had command hallucinations to kill her mother and she started with Risperdal when she was 5.  Now, 20 medications cocktails later, she is almost 13 and plays team sports, has a few friends, and is doing very well in and ED (emotionally disturbed) classroom.  By morning I had more replies with people who have seen their children be where Nixi is and with the right med combo come out the other side of it with minimal collateral damage.  I say minimal because these same moms who wrote to give me hope and remind me that our journey has just begun and is not at the its finish also gave me a number of suggestions to keep myself and my family safe.  "If you haven't already, put all of the sharps away in a locked cabinet."  "You would be surprised what can be used as a weapon.....when X was 8 she ripped a toilet seat off of its hinges and attacked me with it."  "Put locks on your doors or get an alarm system, when my child was having command hallucinations they were also told to leave the house."...."Oh, yes, mine too.  Alarm systems are a must."  Another mother in the group posted today about her own children, having been recently stabbed by her 8 yr old who just had to 5150 (involuntary psychiatric hold).  Another mom posting today that her son had a huge meltdown this morning, the time when his meds are at their lowest potency, throwing chairs, phones, and ultimately beating his own hand bloody on a shed door.  Moments later a horrified, remorseful mess and than as quick as it came on he was back to "normal".....so, Nixi, so "Can you help me find my pearl?"  This mother said that she hesitated to post with something so "trivial" in light of what Nixi is currently going through.  She thought this was trivial, comparatively speaking.  Think about that.  If that incident is trivial, think of what her and her son's life is like on a day to day basis.  I responded to her immediately because we're all just treading water here.  Some days the waves are thrashing, some days the water is still, but it really makes no difference to the person doggy paddling in the middle of the ocean is rescue is nowhere in sight, does it?

Mike and I were left feeling extremely hopeful after reading the responses to my post.  Quality of life is what we're after.  These kids are still struggling but they DO have quality of life.  That is extremely important for us to read and I was so grateful that that's what we got.

So, that was our week.  This coming week we start our grass roots summer school, my mother comes for a visit, and we celebrate Father's Day.  I'm hoping the cooling of the weather and the additional structure of summer school helps the girls get into a routine and helps us all find a little more balance.

Sarah

Dinner with Sophia...


Dreamnight....


Nixi learns how to pump her legs!!

As you can see, the girls loved the pool.  Surprisingly, Nixi is the much more cautious one in the water.  Usually when the girls take a bath together Nixi likes to lay on her back in the tub with her ears submerged in the water.  Without fail, every time, this throws Safi into a complete panic.  She screams, cries, and is generally terrified that Nixi is going to drown.  In the pool, different story...sort of.  Safi  is very keen on learning how to swim and you can catch her out of the corner of your eye experimenting.  She's great at kicking and is learning how to tread water.  She will not allow us to help her float on her back.  Nixi will float on her back if we hold her hands.  Neither are getting the whole holding your breath business and they are not keen on putting their heads or faces in the water.  I ended up buying them life vests because it became pretty clear that, though they can stand out of the water, if they were to trip and fall under they would be totally put off of the pool.  If they can learn to hold their breath and float on their back in the coming months I will be pleased.

Nixi had her last two days of preschool at Maple this week.  It culminated in a pirate themed party.  She was pretty nervous about it but she went and she had a good time.  I just kept her moving through all of the activities and that helped.

Safi had a great field trip with her class and was super stoked that Mike got to go with her.  She had her last speech session of the year ans was super proud of the craft that she made for her therapist.  She's really excited about this week's activity day and she can't wait for our grass roots summer school to begin.

Thursday morning I was brushing my teeth in the bathroom when I head both girls scream and begin crying hysterically.  I ran into Nixi and Mike's room and saw Safi holding her leg, crying.  Nixi was standing up against a wall screaming "I'm sorry, I'm so so very sorry!" and crying.  As I scanned the extremely tight quarters I saw a large box fan fallen near Safi.  I asked what happened.  Safi: "Nixi falled it on me!"  I asked if it was an accident.  Safi: "NO, on purpose."  I turned to ask Nixi but before I could get a word out she said, "It was on purpose and I'm SOOOO sorry!"  They were both crying inconsolably.  I separated them and comforted Safi, making sure she was physically ok as well.  She was.  Then I turned my attention to Nixi.  She was an absolute mess, so upset.  I calmed her down and we left to Safi to school.  On the way back home I asked Nixi very generally, "Does anyone every tell you to do things?"  I could have been asking about her sister, teacher, dad, or friends.  Nixi burst into tears, saying "I didn't want to do it, I didn't want to hurt Safi.  They kept saying 'Do it, just do it.'"  I asked her who even though I already knew the answer, I knew the answer before I got to the doorway of the bedroom that morning because of her prolific, frantic, instantaneous apology.  Nixi:  "The monsters.  They also say to come with them and not to live with my mama or my family."  Nixi had had a command hallucination.  Command hallucinations typically come in the form of audition, or voices, but can also be forms of delusions such as thought insertion.  (Check out this link for a good synopses of the types of hallucinations:  http://www.officer.com/article/10426693/hallucinations-the-ultimate-betrayal-of-the-mind?page=2)  When we got home I asked her if the monsters ever tell her that they will give her a consequence, as command hallucinations generally are in the form of "do this or X will happen to you."  Nixi:  "They say I wont be able to live with my mama."

This comes on the heels of me re-finding and re-reading this absolutely powerful and informative article:
http://www.motherjones.com/politics/2013/04/mental-health-crisis-mac-mcclelland-cousin-murder .  It a fairly long article but extremely well written and there is no fluff, all of it needs to be there for the reader to understand how quickly and easily mental illness can go very, very bad.  Please read the whole thing.  I had read it and posted a link to it on Facebook in the beginning of the week.  I had not been able to sleep the night I read it.  Not because it was "chilling" or a shock, but because it brought back of flood of memories of inmates that I had worked with from L.A. County Jail to California Department of Corrections.  Some of them had killed because of their mental illness, scores more had nearly killed or had seriously injured their victim(s).  I was brought back to a woman who I worked with in a community clinic during my first pre-doctoral internship.  I was suddenly seeing all of these past clients with such clarity.  At the time that I worked with them I don't believe that I truly understood the depth of their illnesses.  I certainly never questioned their living hell or the validity of their reports if I was certain that they were not malingering/faking it.  But I know now that I didn't truly understand the gravity of their situation.  You see, I never knew them before they were ill.  I met them first as an illness, and if I had time (hard to come by working in corrections) I sometimes got to see a little of the person behind the illness.  Now, with Nixi, I see things much clearer.

After reading the article I decided to make a social story for Nixi about her illness.  It would have pictures and brief sentences that she could memorize.  It would normalize her illness as just another difference, life Safi has Autism, mom and dad wear glasses, etc.  It would talk about her symptoms in language that she could understand.  It would talk about why she takes medicine and how important it is to always take it. Most importantly, it would include a section with pictures of all of the people that she could talk to about things that she was thinking of feeling.  People other than Mike and I.  I am making this book to lay the ground work for what will hopefully be a lifetime of excellent medication compliance and self-efficacy.  I am also making this book because it is almost an absolute certainty that at some point in time Nixi's illness will make her family the enemy.  The article addresses this very well and I never want Nixi to feel that she is alone and that she cannot trust anyone.  I want her always to have people to whom she can share the burden of her world with.

Then, Thursday happened.  While I am certain that this is not the first time Nixi has had a command hallucination, this was the first time it was directed at one of us.  Before we went up to Davis this last time she had hurt one of the dogs, this was due to a command hallucination.  That was extremely disturbing but not even close to the level of horror that Thursday was.  Then, on Friday Nixi told me that I hurt her thumb.  I had been holding her wrist, as she doesn't like her hand held, but I was certain I had not touched her thumb. I asked her how I had hurt her thumb and she said "You hurt my thumb with your magic."  She looked confused, cautious, and betrayed.  I told her that I was sorry that she thought that and asked her if it was possible that her brain was bothering her.  She said yes, but with trepidation.  This is called a delusion of reference.  She has these often but this was the first time it had a negative attribution directed at me.  Usually its something like believing that I can hear her when she's at school or that she can control something like make birds fly by wiggling her finger or control the wind with her thoughts.  (Read about delusion types here: http://www.minddisorders.com/Br-Del/Delusions.html)  God, as I type this I am suddenly stunned by how bizarre this all is and by how much I have normalized or down played these things in my mind.  I am in a good deal of denial.

 I had planned to type next that her illness is getting worse, progressing.  And it is.  But I think I'm also seeing it more clearly because it is directed at me and Safi now.  That is new, and heartbreaking, and scary.  I can tell you anything you want to know about schizophrenia.  I can explain to you its course.  I forget, though, that the facts and theories I spout out apply to my daughter.  She will get worse.  Her illness will progress. Its impossible that she has hit the peak of her illness at age 4.  With autism, at a certain point you hit the peak and you see what it is going to be for your child.  Yes, they will change and with all of their changes over the lifespan their disability will change, too.  But not the core of it.  It will morph but you're always able to see where the new symptom has sprouting from an old one and there's a level of comfort in that.  There's not a lot of surprises, pathology wise.  The surprises are generally in the development and maturation of your child, not the disorder.

Not so with schizophrenia.  It has a life of its own and it grows and morphs, separate from the individual and with terrifying uncertainty.  Delusions grow, get bigger, get more involved, more detailed.  Hallucinations change, morph.  The voices can go from being the "monsters" to being the voice of your mother or sister.  It all changes and it changes and morphs over the lifespan.  While some themes may stay the same, as a whole the illness has a life of its own and is unpredictable and ever changing.

Sorry, I realize this post has gotten a bit disjointed.  I'm still sorting this all out.  In any event, I have not been able to sleep since reading the article.  At first it was because I was focused on what we can do now to help build psychological armor for Nixi so as she ages she will always have a at least a toe in reality.  Teach her about the symptoms so that she can recognize when she is having them, resist them, and reach out for help.  Now it is because the atricle is chilling, scary, and so horrifically heartbreaking.  It is now so real.  It is horrible.

I'm fairly certain I'm going to be unable to articulate clearly at this point as my  mind is racing so I'll end now.

Tuesday is Safi's last day of school and I get to go and be a class helper.  Super excited.  Friday night is Dreamnight at the Zoo in Fresno and we are all extremely excited about that.  The girls had a blast at their best bud Sophia's birthday party this past Saturday.

The pool remains a daily joy.  Nixi's psychiatrist wants her meds moved all to one dose at night (.125mg + .25mg), believing that she was experiencing akathisia and cannot tolerate the med at a higher dose.  We'll stay the course for now but he said we may need to start thinking about another med or adding a medication to counteract the side effects of the Risperidone at higher levels.  Life trudges on.

Sarah