When you have two children you always worry about sibling rivalry, equal distribution of time and energy, and meeting both of their needs at the same time.

Tonight, Safi was given a consequence and sent to her room.  When I went in to talk to her about what had happened and suggest we have a "do over", she cried and blurted out "Its just too hard to have her here, I don't want a little sister, its just too hard to have Nixi here!"  My heart literally felt as though it was crawling up through my throat and out of my mouth to encompass her, protect her, hold her.  I said, "Yes, I know, it is hard."  Nixi was blissfully unaware of all of this as she was in the living room on the couch watching a show at top volume.  I then said, "But we are family and family is forever, we love each other when we're mad, sad, glad, mean , sweet, happy, ugly, quiet, or screaming.  We are here for each other on the bad days and the good days and, while we can't choose when and which days we get...we can choose to love each other."  That was it.  That was all I had.  That is all I have.

Just as Safi's Autism took a heavy toll those first three to four years, Nixi's mental illness is currently taking its toll and we're bending under the pressure of it.  I remember feeling such tremendous guilt after Nixi was born for bringing her into a situation that was so scary, so unstable.  Safi was a prolific head banger at the time, so much so that we had to take her to a neurologist to make sure she wouldn't end up "punch drunk."  She was having these full body meltdowns that could last for hours where she needed to be held tightly in order to calm....deep pressure, therapeutic holds...but essentially to the untrained eye, full body restraint.  I remember wearing Nixi in a sling as I did these holds, sometimes nursing her at the same time as her sister wailed and wrenched her body in horrific positions until it felt "just right".  I remember looking at this sweet little baby and thinking, "My god, what have I done."  Outings were a nightmare because something in the environment would set Safi off due to her extreme sensory profile at the time.  I started wearing Nixi in a Chinese Mei Tai because it was easiest to jiggle her onto my back where she wouldn't be at risk of being hit, kicked, or headbutted by an out of control, fear and flight response Safi.  If felt so unfair, to all of us.  But it passed.  Literally as it was passing through the door, Nixi's illness was quietly sneaking in.

Insidious onset, characteristic of Childhood Onset Schizophrenia.  While I always felt something wasn't right with her Autism diagnosis, I certainly didn't see that one coming and most importantly...neither did her sister.  Once Safi began to hit her stride, Nixi's world came crashing down....on all of us...as it would appear in retrospect that she has never known any world that is different.  Now we had to leave outings because Nixi was afraid people were going to steal her shoes or "smash" her.  Now it was Nixi who writhed in mental anguish.  The only difference is that no amount of therapeutic holding, weighted vests, or social stories can make things right for her.  We just have to ride the waves with her as they crash repeatedly on our shore.

Tonight I had to increase her Risperdal by .25mg....we are now up to a total of 2.75mg.  Things have not been improving but instead are slowly getting worse.  The "people" keep telling her she is bad.  This prompts repeated accusations that we don't love her, like her, etc...we only like Safi, the dogs, the cats...as she is doing this both at my house and dad's.  Anytime Safi does anything she doesn't like, at all, even looking at her...."Safi's being mean to me!"  Its relentless and its not fair.  Its not fair to any of us.  Something new has started, her screaming she needs me even when I am sitting right next to her or in her line of vision.  Then when I tell her I'm right there she just continues to say that she needs me or that she misses me.  I have no idea what that is about.   I am no closer to the RV idea than I was last week so I am begging our families to please consider reaching out and talking with either Mike or I about this idea.  I am doing my very best to try to get the old RV on the side of the house up and running so that I can sell it but I'm not sure when I can make that happen and school for the girls ends this week for Nix, and next week for Safi.  When I am able to sell it I will be able to pay back any money lent.  I absolutely know the change of scenery helps buy us some time with Nixi and it also allows Safi the luxury of meeting new kids, practicing social skills, and it benefits her the most to have a tired and somewhat stable sister.

With that, I say goodnight.  For my birthday I was given the gift of the world....it was and is the best gift ever....and its the same gift I want to give to the girls.

Sarah

May 20th...scary, as I've not seen her facing a wall muttering to herself since mid 2012.  She had been jumping on the trampoline inside and we were talking about lunch, I opened the sliding glass door to let the dogs out and seconds later came back into the house to this.....


After school that same day. I tell her not to come at me because by the time I videoed this she had already come at me in frustration/agressively several times.