Well, here we are again.  Another April, another chance to raise autism awareness on a grand scale, and another year gone by in the blink of an eye.

I'm sure I've talked about this before but humor me, as it weighs heavy on my mind tonight.  I can't help but say to myself, "Another April...has it been a year...really?!?....What have I missed?"  Living the way Mike, myself, and the girls do...triage, from one fire to another...leaves so little time to sit still and enjoy our lives.  There have been a number of milestones over this past year, and I can rattle them all off to you in a second...Safi mainstreamed into a huge kindergarten class, Nixi is in preschool, we've gotten new pets, has visits from family, made amazing new friends, etc.  But I still feel as though, in some sense, I went through these experiences in zombie mode.  See, I'm never able to really let go an enjoy the moment because I am always worried that something will set off one of the girls and bring things to a screeching halt.  Always waiting for the other shoe to drop.

The best defense is a good offense.  Never let your brain rest, always think three steps ahead.  HAVE TO GIVE THE GIRLS A HAPPY LIFE.  So much pressure.  We're used to living like this, but this year its different.  This year, and for the rest of our lives, we really will be waiting for the other shoe to drop....on Nixi...squashing her like a bug on a windshield that never had a chance.  That poor bug was just flying along, feeling the wind in its wings, the sun on its face...SPLATTTTT!  Some fool will walk by and marvel that, while flatter than a pancake and guts squished out, that bug was really beautiful.  "Look at the wings, the body is iridescent!"

 This is pretty much what Nixi has to look forward to once the windshield catches up with her. "Awe, but she's so cute.  Her voice is so sweet.  She says the darnedest things!"...and then the guts, on display for everyone to see, psychosis.  I know that this is April and we hijack the blog to do autism awareness stuff...but this year we are in a whole other world.  You see, psychosis is progressive.  Here we are, solidly at the 7 month mark (9 if you count the two month paranoia prodromal stage) and Nixi remains psychotic.  We've passed the 6 month mark needed for Schizophrenia and she has psychotic symptoms in the absence of mood symptoms.  While a particular diagnosis doesn't really matter, as all chronic psychotic disorders are progressive and treatment is roughly the same, you can read between the lines.  I don't want a child with schizophrenia.  I don't want a child who has Bipolar I with severe psychotic features.  I want a freaking child with Autism!!!!  I can do that.

This is my daughter prior to September 5th....

This is my daughter in the grips of psychosis.....

Safi is doing really well.  Sure her social skills continue to be one of her greatest deficits, her anxiety level is often through the roof causing her to be a control freak, she only eats a handful of foods, has mega colon, when asked says that she prefers things to people, doesn't understand basic safety concepts, has crying jags several times a week for one reason or another.  But she's doing quite well, and its manageable and somewhat predictable for us at this stage in the game.  She will change, grow up, new challenges will arise...but we have been meticulously building the foundation that will help her with all of these transitions.  And I believe that she will get through them and come out the other end.

With Nixi, we just don't know what the end of her tunnel holds and its terrifying.  Like wake you up out of a dead sleep with heart palpitations kind of terrifying.  When will be the day she leaves us forever, only coming back to us as parts of the little girl we knew and even then only with the assistance of highly toxic medications?  This is not cynicism or unrealistic worry of concerned parents.  This is a 100% fact.  This day will come.  That is the course of psychosis.  Will it be tomorrow or will it be in 20 years.  The suspense is draining.  And she knows it, too.  I believe that with all of my soul.  Each time her stress level increases and her symptoms increase she seems more and more helpless to fight the things inside her head.  Her apathy grows, as if she is resigned to the fact that her worst moments may be her new norm.  When this all started she fought the thoughts, the hallucinations, the fear.  She talked to us about it, she wanted us to tell her that it wasn't real, she clung to us...to me for safety.  Now, she often denies obvious symptoms and get angry when you ask her how she's doing.  She cocoons herself and her thoughts, only exposing her manic and desperate attempts to create so much external stimuli that the internal stimuli lessens.  She becomes a whirling dervish...eyes wild, voice loud and screechy, moving a million miles a minute with this huge Cheshire grin. To most it looks like a kid having the time of her life, to us it is a signal that a part of her is gone.  If you try to slow her down you'll enrage her.  Must keep going, can't stop, can't take a break.  She hurts herself daily because she is going so fast.  She has begun mutilating her thumb...I put a bandage over it...she's moved on to other fingers.  During our visit with Grandpa Seifert and Aunt Becky she sliced her tongue open with a fork.  She listens to me retell an incident with a bully at the park and asks me "Did he kick me in the face like that?" and slaps herself in the face so hard you can hear her nose crunch.  Not a flinch or even a blink.  I've stopped blowing kisses to her because when we do the routine catching of the kiss and putting it on our cheek she slaps herself so hard it leaves a red mark.  While the other shoe has not dropped, the laces have surely untied.

I'm tired.  Mike spent last weekend and this weekend building the girls' birthday Chalet and swing set.  I helped a little but it was entertaining the girls by myself for the past two days straight that has me beat.  The IEP was an IEP.  We got everything we wanted, everything Nixi needs.  I got a better sense of where the teacher's head is at, and she mine.  It was the best IEP I've been to.  I felt like we really worked in this one.  But I have IEP PTSD.  A week of no sleep and stress culminating in a tense two hour meeting is mind numbing and draining.  So I'm off.  Next week I'll get back to the more Autism centered posts, but this is just where we are all at this week.  So, be thinking of Safi on her birthday this Tuesday and make sure to check back next week to see how the girls' carnival birthday party went!

Sarah

The Chalet....