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.

Took Mother's Day weekend off from the blog because we were busy having way too much fun in Santa Cruz and Scotts Valley!  It was a blast...and due to dad's diligent support and encouragement in his complex's pool, Safi "swam"(damn good dog paddle with floatie wings) as much as possible and cried when we had to leave.  Nix enjoyed warning people that they may sink and drown, blowing bubbles, and bravely venturing off of the pool steps and screaming, "Look!!!  I'm touching the bottom!!" before scurrying back to the steps.  It was a really wonderful time and none of us wanted to go home.

The Friday before Mother's Day, Safi ran in her first track and field event.  She did the standing long jump and the dash and did great!  She was bummed that she didn't get a ribbon but she wasn't in last place, either, so we were able to convince her that she kicked some butt.

So, last entry I said I would talk about a radical idea to help break Nixi's increasing symptoms without med increases.  Two words....Recreational Vehicle.  Stay with me, here.  When Nix is falling down the rabbit hole and her symptoms are amping up I've noticed that changes in scenery can distract her enough from her internal world that she never hit the bottom of that hole. It never lasts and I get that it a desperate and extreme form of distraction but I don't give a shit.  I need to keep this kid as well as possible by any means for as long as possible so we can delay the dreaded Clozaril as long as possible.  Clozaril is the antipsychotic that will more than likely prove the best for her degree of symptoms....its also the most terrifying.  None of the antipsychotics are approved for use in children for Schizophrenia, and when used in children side effects tend to be more common and more severe.  The scariest with Clozaril is agranulocytosis which causes a drop in white blood cells which our body needs to fight infection.  Because this can and has killed patients using the drug the manufacturer has created a program where the patient, doctor, and pharmacist must be registered in order for the med to be dispensed in order to ensure that weekly blood draws are happening because this can be life threatening.  Myocaditis(inflammation of the heart muscle) and cardiomyopathy (enlarged heart) are both concerns, as well as seizures, and orthostatic hypotention (significant drop in blood pressure).  What I've seen on the parent support group that I'm in is that kids taking Clozaril, none younger than age 10, seem to experience Clorazil toxicity often causing them to have to be taken off the med to reverse the white blood cell decrease.  They are then put back on it but at a lower dose and it becomes a vicious cycle of a stabilized kid needing to be taken off meds due to medical reasons, becoming extremely mentally unwell while their body tries to recover, then going back on it and never getting the same result as that first time because their body can't take it.  Don't get me wrong, even at the lower dosage these kids are forced to go to they still do really well on it....but the damage to the body is harsh.  Given that Nixi will likely be on medication for the rest of her life....I'd like it to be as long a life as possible.  So, out of the box thinking.  The RV.  I'd like to try taking the girls on several two night trips within a few hours distance each week this summer.  I think it will break up Nixi's psychosis so it can't get a foothold and as long as there's a pool and kids, Safi will be happy as can be.  So, I'm trying to sell the giant RV we have on the side of the house that's in pretty rough shape to buy a smaller RV in less rough shape.  If it will last us a summer and get us where we need to go, I'm all over it.  Any family out there who thinks this seems like a reasonable plan and wants to chip in, it would be much appreciated.  You can contact Mike or I and let us know.  He thinks this is a good idea, as well, and as horrid as it is to ask for financial help.....if its for my kids, I'll swallow my pride any day.  I'm not looking at anything over $5,000...so we're not looking for a palace.  It just needs to be safe and have a great generator in case we get stranded somewhere.

She's struggling.  She's as happy as she can be, but she's not "stable enough", she's not doing that great.  I don't want to increase her meds because we're only half a mg from having to change meds.  While we're not jumping to Clozaril, the next med in line has its own host of side effects that aren't pretty and because we already know that she experiences extrapyramidal side effects (EPS) on Risperdal, the chances of her experiencing EPS on other meds is pretty good.  So, the RV may seem like a desperate measure....and it kind of is...but some of the best ideas were born out of desperation so we're going to try to run with it.

I woke up sick today and I'm beat so that's all I got for now.

Sarah

May is here.  Mental Health Awareness month.  A little known fact, but Nixi was supposed to be a May Day baby.  She was scheduled for delivery via c-section on May 1st but had to come earlier due to my blood pressure.  I recall dryly joking on the day that she was formally diagnosed with Autism about the irony that she ended up being an April baby just like sister...Autism Awareness Month...had we only known then what we know now.  Not that any other this matters, its just something that sticks with me.

Anyhow, we began the week with me commenting to my friends that I felt we got the meds just right because Nixi was the most "stable enough" that's she's been in awhile.  Without fail, whenever I do this she goes to pot....and she did.  My Wednesday she was very "off" after school, lots of crying and misinterpreting kids at the water fountains.  Continued to escalate the rest of the evening so I finally asked, "What are the people doing today?"......"Saying, 'Let's cook Nixi' while I was at school!"  An hour later, as she continued to be very emotional and irritable I asked her what they were doing at that moment...."They're eating breakfast.  That's weird because its night."  Up until then, this is what Nixi says when the "People" (voices) are quiet.  But this night she then covered her ears and said, "And its so loud because they're eating with their mouths open."  I asked her what that sounded like and she made this horrid crunching noise.  Back down the rabbit hole our little Alice began to slip.  Thursday morning she asked me if I knew of "Dismis".  I thought it was something from a show they watch and told her no, asking what it was.  She then told me that its a land where there is a farm and lots of houses on it that her dad had told her about.  I, of course, texted Mike to see if he had mentioned anything of a farm, land, anything that she could be confusing to which he replied he had not.  A month or so ago when Nixi had said that she was going to live with me forever I had told her that I had a better idea.  That one day I would buy a farm with lots of land and build houses on it so she could live in a house right next to me and help me work with kids like her and her sister...and she could help raise and take care of the animals.  She said she would take responsibility for caring for a pink unicorn.  That was that.  Never spoken of again.  So, it was clear by the end of this week that she her thinking was disorganized and delusional...as when I told her that I texted her dad and he said he had not spoken to her about that she became irate and didn't believe me.  Par for the course with disorganized thinking.  I did remind her that her and I had talked about such a thing, though it was not a land named Dismis, which she flatly rejected.

They had a nice weekend with dad.  Nixi being the "lifeguard" at the pool in his complex which consists of her not leaving the stairs...and Safi dog paddled from one side of the pool to the other!!!!  HUGE accomplishment.

They rode their bikes and had a grand time.  Mike reported that Nix was "always fidgety and wanting to eat" the whole weekend and earlier this evening he could tell that she was having auditory hallucinations (hearing/listening to something) but when he asked her about it she denied it.  The ebb and flow, waxing and waning of schizophrenia.  Sometimes, no matter how perfect the med dosage or circumstances, she's just gonna crash a little.  Nature of the beast.

I'm tired tonight so I'll leave it at that.  Next week I'll share my new, radical, out of the box idea to help us break Nixi's increases from psychotic baseline without increasing or changing meds and also talk about her most important IEP goal that isn't even in her IEP yet....talking to someone other than me and a select few about her symptoms.  Until then, we gear up for a really exciting week of nice weather and Safi's first track meet!  She will be competing in the dash (sprint) and standing long jump!  Shall be interesting!!!!

Sarah