Childhood mental illness isn’t static.  Because their brains are in flux, developing and growing, like the rest of their bodies, a diagnosis of anxiety or depression might change in children.  It might become something else later on as the brain continues to mature.  This was Grace’s journey.

Her first diagnosis after her first neuropsychological and psychological assessment was a Major Depressive Disorder with co-morbid anxiety disorder.  That diagnosis later evolved into a Mood Disorder NOS diagnosis which later became Bipolar Disorder NOS after five days of in-patient hospitalization for stabilization and adjustment to medications.

I have been told that this is a typical progression for serious mental health disorders.  They usually always start out with a depression diagnosis with a dash of anxiety for good measure.  Once the child is treated for that, they are then observed to show no improvement.  In fact, they usually worsen.  The experts scratch their heads and ponder.  Make assertions.  Go back and forth.  Positions are taken.  This has been our journey.  And here we are…

Where are we to be exact?

I saw Grace’s neurologist yesterday because her psychiatrist wanted some clarification.  The question? What’s up with her hallucinations? The answer? They are not neurological, but we’ll do one more MRI just to be certain that her brain looks like it did in March.  I saw another psychiatrist today because we’ve had this appointment for a month and a half.  She’s one of the best in the Cities, and I wanted some guidance.  Frankly, a second opinion is necessary.  She interviewed Grace alone for 35 minutes, then I came in.  After another hour the truth came out.

Grace is not bipolar.

She’s not?

She falls on the schizophrenic spectrum.  I’m sorry.

This changes everything.  This changes the medications.  She has to start antipsychotics immediately.  We were told to put her back in a partial hospitalization program again so that she could be monitored daily.  She would receive counseling on her diagnosis, what it means, and how to live.  She would also get some schooling and an IEP.  We may be looking at long-term day treatment.  Six months or longer.  It’s not sinking in.  I can’t grasp it.  She’s really schizophrenic.  One of the worst and rarest mental health disorders that could plague a human being is in my world.

My daughter has schizophrenia.  She just turned 12.  How could this be?

Gracie is still psychotic.  Goal #1: Stabilization.  Schizophrenia is not an episodic illness like Bipolar Disorder.  We will have to learn how to manage this and keep her stable.  It’s possible that she can do well, but it means supports and interventions.  NOW.

I’m so exhausted.  I want my girl to feel better, and I don’t know when that will be.  I am in the middle of a huge battle with the school district as well.  This takes a toll.  And…I do have three other children.  I have to keep telling myself that.  I have to put boundaries around Grace.  She can’t swallow the entire family.  Others have needs, too.  I’ll go crazy if I don’t remember that we were a family made up of individuals, but a whole at the same time, before Gracie became schizophrenic.  We’ll descend into some sort of Black Comedy of Errors, a farce of anger and neglect:

“What do you mean you fell and hurt yourself! Do you have three armed men chasing you day and night, real or imagined? Do you?! So, get up, wipe the blood off your hands and knees and quit your whining, kid, ‘cuz at least you have a working brain and don’t hear voices, y’hear me? Y’ hear? Quit your cryin’ and shut up!”

Yeah…that’s not going to win me any parenting awards.  Schizophrenia will trump almost anything any day of the week.  Even autism.  I never thought I’d be in a position like this.  An autistic child and a schizophrenic child.  It’s a good thing I have a helluva sense of humor.  Have you read the studies on childhood-onset schizophrenia (COS)? I’m gonna need that sense of humor…

I think I’m going to eat some chocolate now.

One day at a time…

P.S.  One day later

I was told today that no one has room for Grace.  All the day treatment facilities are full up.  The nearest city that might have a day treatment facility able to help her is 4 hours away, but they might not have room either.  In the meantime, I have a child in active psychosis who still needs to start a regimen of antipsychotics under the supervision of a psychiatrist.  Welcome to the world of mental healthcare in America.  I can’t send her to school.  I can’t leave her alone.  I don’t know what to do.  No one seems to.  This…sucks.


14 thoughts on “Evolution

  1. I’m going to bring you dinner tomorrow – complete with chocolate. One day at a time. Right now it’s one step at a time and that’s okay. *hugs*

  2. Thanks for sharing your daughter’s story. I’ll be following. I have child-onset bipolar (was diagnosed later) so I am always interested of hearing and learning how parents do it!

  3. “Goal #1: Stabilization.” Seriously. I don’t know how you can be sinking so much time and energy into the IEP when you’ve had so much flux over the past few months. Unless you’re just warming up.

    • I’m an eternal optimist. I have bad days, but I remain hopeful. That’s why a certain friend made fun of me and said I was like the guy in the Far Side comic–whistling in Hell. That’s me, and I think that’s a good thing.

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