Beginning of week....

Nixi insisted on having her picture taken because she looked "soooo beautiful"

Dance class, new student this week!  Nixi's friend Ava from early intervention!

Friday....

I'm tired, its been a long week, and it ended in a horrific crescendo of screaming and complete meltdowns this evening.  New toys from the consignment sale always spark a mini meltdown, add to that still transitioning to spending the whole Saturday at dad's, and Nixi being drained by the end of the week and you've got a recipe for one hell of a roof raising.  But we got through it, lasted about 15 hellish minutes...and life goes on.  They struggled this morning, too, but before bed was off the hook.  I'm thinking of giving Nix her meds at bedtime instead of an hour before.  I know that she can't reach peak state during waking hours and kids metabolize at such a faster rate, perhaps she reaching peak state in an hour or is just too tired by 7:30pm to not meltdown but lately its been getting worse.  Warning, disjointed and unedited post to follow because I don't care to read this after I'm done.

Safi had a decent week.  She struggled one day because she was called out for Occupational Therapy and missed science.  Once she got back to class she was trying to play catch up which meant that she was further out of sync with her peers and she just continued to go downhill thereafter.  When I got there to pick her up she was quietly finishing an assignment and when she turned to say hi to me her eyes were bright red, puffy.  It was so sad.  She is an advanced reader(AR) and the straw that broke the Safi's back was not being able to take more than one AR test that day.  Kids are only allowed to take one a day and Safi, of course, thinks that that's ridiculous if a kid can pass them and she got 100%.  Alas, that is not the rule.  So, she hounded the teacher until the teacher had to give her a consequence.  An all around miserable day for her.  Certainly doesn't help things that her sister is completely psychotic.   At any rate, she started the week strong and ended the same.  She's really doing wonderfully....now if we can just do something about the 16 yr old attitude and voice coming out of that tiny, 6 yr old mouth.....  Every bit my child, she is.  I shudder when I type that.

Nixi.  What's new with Nixi?  Not a whole lot.  She's psychotic...schizophrenic, even.  I waited until Wednesday to email the psychiatrist.  I couldn't even call him because I didn't want to have a dialogue about what was going on and I waited until Wednesday because I just couldn't handle it any sooner, frankly.  See, while totally out of her mind last week after giving up fighting her illness, Nixi was happy and peaceful.  She was enjoying her inner world.  She wasn't fearful, she wasn't anxious, she wasn't totally in our world...but that terrified me, not her.  And this is about her, right?  My role as this kid's mom is to support her.  I have never wanted to change her, lose the essence of her which has been her illness in some variation from the moment of her birth.  So what the fuck am I trying to do now?

Here's where I'm torn.  Untreated psychosis absolutely causes brain damage.  I would never at this point consider taking Nixi off of meds completely, but if the med isn't working its like giving her tic tacs laced with rat poison.  Essentially filling her full of toxic material for naught.  At the same time, I am unwilling to let go of the Risperdal because I feel like if I do there's nowhere to go but the scarier drugs...and even then there's really only two choices as far as antipsychotics go.  We are at a crossroads.  I remember coming to this crossroad with Safi right before she was three and her self injurious behavior was absolutely terrifying.  I said one day to her OT and speech therapist, "What if I don't do ABA?  What if I don't treat her?"  They said, "Then you'll love her and help her figure this world out the best you can, like you would any other child."  They were absolutely right.  That's when I told Bright Futures to piss off and requested the consult from a different company.  Best decision I ever made and my only regret was allowing people to make me feel like I would be doing my child a disservice by making that choice sooner.

So, medication.  The psychiatrist emailed me back that we should definitely increase the Risperdal and that we would need to consider changing meds at some point.  Ok, cool.  But sitting there Wednesday night staring at that bottle I couldn't shake the feeling of "leave well enough alone."  She was happy, peaceful even.  The only point of increasing the meds, for me, is to get her insight into her illness back.  But when she has insight into her illness it scares the hell out of her, as it should.  Increasing could bring the akathisia back, and that's just downright mean...but easily fixed by stopping the increase. And increasing with no changes in symptoms means its time to call it day on the Risperdal.  If we do that do we do a med "wash out"?  Or do we titrate her down, simultaneously adding the new med?  Is she going to become a zombie?  If we did a med "wash out" and she was no more or less psychotic than she was on the Risperdal, I can live with that and so can she...I think.  So hardcore.  I was paralyzed with the bottle in my hand, so I reached out to a trusted and gifted friend and fellow psychologist.  He said many things that made a tremendous amount of sense, but the most important point was that increasing her meds didn't commit me to doing anything further.  Doing the increase didn't mean that I had to change meds or do anything I'm not comfortable doing if the increase was ineffective. Basically, doing the increase had the chance of helping...small chance of harming but nothing that couldn't be undone quickly...and it meant absolutely nothing other than what it was.  Totally genius but a concept I hadn't considered.  I have been feeling like Rsiperdal was a sort of "gateway drug."  We've been chasing the wonderfulness that we saw those first two weeks she was on it, first two days if I'm being really honest, for five months now with varying degrees of success but never getting back to where we started.  So, tonight I'm saying it.  I'm calling it.  I'll keep her at the increased dose of .75mg for two weeks, after that, all bets are off.  I think I want to do a "wash out".  Maybe I need to see what that looks like.  Maybe that will give me a better idea of what the Risperdal really was doing, or not doing.  Then maybe I can make a more informed decision.  Maybe I just need to not poke the bear...if its happily hibernating...perhaps putting down the stick and just letting rest for awhile is wise.  When she's older she can be on some of these more disturbing meds...not now.  I'm not going to risk not only harming her body in the present, but killing the chance that these meds could work at a later date when we need them more than we do now by doing damage that can't be undone.  This is uncharted territory.  Later Wednesday night I was checking my email and saw a second email the psychiatrist had sent earlier in the day.  It read simply, "One day this should be written up---I've never seen anyone like her."

Dagger through the heart.  Nobody wants the kid that's unique, everybody wants the kid that's been seen a thousand times.  That's the kid they know what to do with.  We are screwed.  That said, I trust Nixi's psychiatrist completely and have absolutely nothing but wonderful things to say about him.  He is knowledgeable, caring, and an all around tremendous human being.  He is absolutely right.  From a psychiatric standpoint Nixi is fascinating and because I have been keeping documentation on her since literally birth she is the most thoroughly documented child schizophrenic in history.  Her case will be written up one day, just as one day this blog will be a book that will hopefully fund Utopia.  But not until the time is right.  She is a child, not a curiosity to be gawked at by the masses.  She's just a little girl, and she's my little girl.  Our story, our life is a fair price for a good start at my daughters' futures and the futures of the others that Utopia will shape and nurture....its just not a price I'm willing to pay just yet.

Sarah

Mon or Tues after school...its all becoming a blur at this point


Thursday after school....


JBF consignment sale score...karaoke machine!


Raddest kids EVER!