Good News

“I reject your reality and substitute my own.”–the emerging motto in my house as of late

Grace is being admitted into a partial hospitalization day treatment program! The program lasts from 6 to 8 weeks, and her care team will consist of a social worker, a nurse, a therapist, and a pediatric psychiatrist.  The school district is responsible for transporting her there and back, and she’ll even get two hours of schooling a day.  This feels like a miracle to me.  Grace has been home for three weeks, completely incapacitated by her illness–hallucinating and out of touch with reality.  She’s currently too afraid to sleep in her own bedroom so she sleeps on the couch at night.

During the needs assessment, we were asked all sorts of questions.  My two favorites were:

“Is Grace currently experiencing any anxiety?”

“Uh…well, there are three men and a creepy lady following her everywhere.  She’s anxious, yes.”


“Has Grace been moody?”


“Besides the mania, the depression, and the paranoia?”

“What other moods might you have in mind?”

(All of us looking at each other in silence.  Laughter ensuing.)

“I’m sorry.  This is a form.  These are ridiculous questions.”

She begins the program on Tuesday morning.  Now, I must contact the school district and arrange for her transportation.  Let the games begin…


Yet Another Diagnosis

We’re on the merry-go-round of assessments, and everyone has an opinion, I guess.  So, here’s the skinny:

As I recounted, Grace had her MRI on Saturday.  Check.  Dr. Nacho lectured us about preventing migraines.  Check.  I took Grace to see Dr. Awesome, one of the most well-respected pediatric psychiatrists in the state.  She oversees a program at the local mega-versity called AHEAD (or “A HEAD ” which is just weird since it deals with psychiatric issues) which screens for early indicators of schizophrenic and psychotic mood disorders.  Grace was supposed to go to the AHEAD program on Halloween for her First Psychotic Episode assessment, but we already had an appointment with Dr. Awesome last Tuesday which we’d scheduled last August.  I jumped on it.

Dr. Awesome informed me in her office that Grace had a “schizophrenic spectrum disorder”.  She suggested treatment with atypical antipsychotics (Grace just started Abilify yesterday) and day treatment.  Grace is currently psychotic, and, therefore, oblivious.  I, however, was numb.  Well, today, Dr. Awesome’s dictated report was faxed to Grace’s primary psychiatrist–Dr. Foxy. (I know, I know.  I’ve given them all interesting names.)  I was notified immediately when the report arrived.

“Did Dr. Awesome’s report arrive at your house yet?”

“No.  What does it say?”

“Well…Dr. Awesome has diagnosed Grace with…Get ready for this…A Major Depressive Disorder, Bipolar Disorder, and Schizoaffective Disorder with instructions to follow her for emerging schizophrenia.”

“Uh…she just told me that she was on the schizophrenia spectrum.  Schizoaffective Disorder falls on the schizophrenia spectrum.”

“Yeah, it does.”

“So, we didn’t lose the bipolar diagnosis? She’s still bipolar?”


“And she’s still got that major depressive disorder, too? I mean, in addition to the other major mood disorders?”


“Damn.  How many brains can my kid fit into her little head? How can one child be bipolar, majorly depressed, and land on the schizophrenia spectrum?”

So, what sort of tagline do I put on my blog now? I mean…damn.


Warning: Please excuse my husband’s and my sense of humor if we offend you.  It is how we are coping.  If we don’t find the funny in our daily lives, then we’ll fall into heap on the floor and do the Homer Simpson in an infinite loop.

This morning I took Grace for her second MRI.  Her neurologist, whom my husband has derisively begun to call Dr. Nacho, has ordered the second scan to be sure that her brain isn’t degenerating.  Apparently, some rare degenerative neurological conditions present like schizophreniform mood disorders.  So, Dr. Nacho is doing her part to rule out any hidden medical conditions.  At 0830, I dosed her up with Diazepam aka Valium and dragged her off to get her head scanned.   She did well, and she even felt well enough to attend a charity event with our church’s youth group.

Pause: If you’ve attended a church youth group as a youth, then you might recall that it’s just like attending middle school or high school in its social dynamics. It’s not friendlier or more welcoming or even more sensitive.  In fact, in my experience, if you want to be made to feel left out–particularly by girls–attend a church youth group.  Relational aggression runs high.  It’s just the way it is.

Play: Grace’s older sister accompanied Grace to Feed My Starving Children today–the service event chosen by the youth group leaders for their outing today.  Grace really wanted to go.  It’s a marvelous charity, and I thought it would enhance Grace’s self-esteem, too.  She is still psychotic, but she is managing to hold it together enough during the day if she isn’t stressed terribly.  The Three Men follow her everywhere, but the Creepy Lady hasn’t shown up today.  The Three Men were also not brandishing swords which meant that her psychosis wasn’t terribly out of hand this morning.  I let her go.  Her youth leaders would be supervising her as well.  She needed to feel successful.

When we picked her up, she was smiling, but I could tell that she was exhausted.  Grace and her sister climbed into the car and reported that all went well.  Grace had the job of weighing the food.  She felt good about it.  Then, the story began.  There were three girls.  Three mean girls.

Grace:  “Why are there always mean girls? I don’t understand it.  This is church!”

Me:  “Well, who knows what’s going on with them.  People have all sorts of reasons for being mean.”

Grace:  “They were talking about this horror movie while we were packing food for starving kids.  How is that appropriate? (beginning to mimic one of the girls) ‘And then this baby had a demon go into it, and then the baby started walking around, and it was, like, sooooo creepy, but I wasn’t, like, scared at all!’ That is NOT okay conversation, Mom!”

My Husband:  “Well, you never know, maybe their parents made them watch that horror movie.  That’s some pretty convincing birth control, don’t you think?”

Grace: “DAD!”

My Husband: (putting on his stern Texan father voice) “Sit yourself down here, girls! You’re all gonna watch this horror movie about a devil baby! Now, you’re all gonna think twice, aren’t you, before you date, I bet!!”

Grace: “DAD!!”

My Husband: “Those devil babies are a real problem! How’re you gonna nurse a devil baby? They have those pointy teeth! And, they’ve got those red eyes! You can’t get rid of red-eye in all those portraits, can you? It wasn’t really a horror movie.  It was a fable!!”

Grace: “DAD!!!!”

Grace’s sister and I were laughing so hard that we couldn’t speak.  Perhaps you had to be there, but leave it to my husband to add some much needed levity to the situation.  Grace couldn’t even remember what she was upset about.  She was too upset with her father for talking about nursing devil babies and trying to take their pictures.  She completely forgot about mean girls, relational aggression, their cool iPhones, and the fact that she hasn’t been in school for two weeks.

Humor.  It is so important.


The dust is settling from the new diagnosis.  I don’t think any of us were terribly surprised.  It’s the implications surrounding it that weigh heavily.  I’m trying to find resources, and there are few to none.  There were actually a fair amount of resources for childhood-onset Bipolar Disorder; there were books, websites, online support groups, etc.  All I can find for childhood-onset schizophrenia (COS) are journal articles that argue about the relevance of psychiatric nosology in relation to treatment. It seems that even the experts aren’t sure.  I suppose that would be the case when only .0000001% of the population is diagnosed with COS.

So, what now? Grace is psychotic.  What does that mean? It means that she is actively hallucinating and experiencing paranoia.  Sometimes she seems to be grounded and lucid, but her speech is disorganized.  It’s hard to tell what’s real for her.  What I have going for me is a solid relationship.  She’ll talk to me.  This is where I’d like to take a moment and remember all the parents with whom I’ve been acquainted, who have clearly stated the following to me:

“You are too involved in the lives of your children.  You insert yourself into their interactions too much.  Me? I just let them figure it out.  They need to fight it out.  Why are you constantly helping them? (It’s called ‘modeling’, idiot.)  They’ll eventually figure it out. (No, they won’t.) When my kids come to me and tattle on someone, they learn really fast not to involve me in their problems! A good spank on the butt or a time-out teaches them to be self-reliant! (A child can’t solve social/relational problems at 7 years-old.  They can identify a problem.  Not solve it.  They are not developed cognitively for that level of problem solving.) You? You hover. (Actually, I don’t hover.  Helicopter parenting and modeling appropriate relational skills are two very different things.) Me? Self-reliance.  That’s what I’m about.”

…and tell them to:

Why? After having endured lecture upon lecture by well-meaning but self-righteous parents who have watched me “insert” myself into my children’s conflicts over and over again, I can finally see the fruits of it.  Gracie will talk to me–even when she’s psychotic and paranoid.  I was the first person that she told about the Three Men who currently follow her everywhere.  One has a cowboy hat.  Another wears a black bowler hat while the third wears a brown one.  It’s very steam punk.  They all three carry handguns when she’s not terribly paranoid.  When the paranoia is increasing, the men begin whispering about her, making plans to harm her, and they usually begin carrying swords in addition to their firearms.

My other daughters share their lives with me, too, and my oldest daughter, who is almost 16, has a good relationship with me as well.  My girls have good communication skills, and they are doing a good job with Grace.  I homeschooled my two oldest daughters for six years, and I was heavily criticized for it.  I didn’t do it because I have strong views on homeschooling or education.  I did it because my oldest girl was reading when she was 4 years-old, and a virtual elementary school opened up in our area when it was time for her to begin Kindergarten.  She has a high IQ, and I thought perhaps she might enjoy the ability to move at her own pace.  Honestly? I hated homeschooling.  It was hard.  My daughter, however, thrived, and I learned a great deal about how curricula were designed, phonics teaching, and authentic number sense.

By the time I got to Grace, she was excited to have her turn with Mom, and it was clear one month in that she had learning issues.  In fact, Grace had a learning disability.  Grace’s working memory is ranked in the 3rd percentile while her reading comprehension is ranked in the 99th percentile.  Common to people diagnosed with SCZ or COS, she has major problems with executive function.  I would have never tagged Grace for early assessments, however, had I not been “that parent”.  The mother who made relationship a priority.  The mother who didn’t say, “Oh, just figure it out.” or “Go rub some dirt in it.”  or  “Shake it off.”  or  “Stop crying, leave me alone.”  So, in some ways, I feel vindicated.  She is going to get help now.  Not in five years.  Now.

I don’t homeschool anymore.  I never homeschooled my youngest girl.  She has an autism spectrum disorder.  I was told yesterday that studies are beginning to reveal that ASDs and schizophreniform disorders run in families.  Schizophrenifrom.  That’s a weird word.  Say that ten times really fast.  Anyway, I shouldn’t be surprised that I have an autistic child and a schizophrenic child.  Huh.

I think I might feel a little surprised.  No matter what the studies say.


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.

Sunday Evening

Grace has just come off a week of migraines.  I don’t know if it’s just one migraine that won’t abate or numerous migraines that remit and continue.  She missed an entire week of school.  The school doesn’t seem to care.  Should I?

Her pediatric neurologist finally returned my call this afternoon, and I filled her in on Grace’s condition.  Grace’s psychiatrist doesn’t know what to make of her hallucinations.  Actually, I think he has some ideas; he’s just doing his due diligence.  Her neurologist was very compassionate, and I realized how much I needed it.  Compassion is in short supply.  I almost cried on the phone.  I explained to her that Grace’s psychosis is worsening.  She is now terrified to ride in the car.  She doesn’t want to look into mirrors or pass by windows.  She now sees the three men all the time, and now they are brandishing swords as well as handguns.  They look meaner and more intent on harming her.  She fears that everyone might be out to get her, and she can’t tell what’s real anymore.

This is starting to sound a lot more like schizophrenia.  Gracie isn’t the only one experiencing terror at this point.  I’m right behind her.

Her neurologist will do her due diligence, too.  Another MRI.  Perhaps another EEG.  There are degenerative neurological conditions that present as psychiatric conditions, but they are rare.  So, is childhood-onset schizophrenia.  She told me that she believes Grace’s condition to be psychiatric in nature, however, and not neurological, but she is on board.  We are also seeing another psychiatrist next week.  We need another pair of eyes.  This gal sees a lot more schizotypal kiddos, and she may be able to help us.

I’m…exhausted, and I can’t send Grace to school.  It is completely irresponsible to send a psychotic child to school.  I know that even if the school district does not.

My husband and I are scared, but we must be brave.  There is little room for fear right now.  We have three other children.  Not just Grace.  I have an autistic child, too, who needs special attention.  I have another daughter with an anxiety disorder.  I…must solve this.  A foundation of truth.  I can build on that.


I may be doing this out of order, but it’s what I’ve been battling for weeks.  The IEP–individualized education plan.  I gotta say, I’m beyond exhausted, and the battle is only just beginning.  Let’s just hit the ground running, shall we?  What is an IEP? I like this answer:

“IEP stands for Individualized Education Program (alternatively called an “Individualized Education Plan,” “Individual Education Plan,” or some combination thereof). This is a legally binding document that spells out exactly what special education services your child will receive and why. It will include your child’s classification, placement, services such as a one-on-one aide and therapies, academic and behavioral goals, a behavior plan if needed, percentage of time in regular education, and progress reports from teachers and therapists. The IEP is planned at an IEP meeting.

The individualized part of IEP means that the plan has to be tailored specifically to your child’s special needs — not to the needs of the teacher, or the school, or the district. Goals, modifications, accommodations, personnel, placement, all should be selected, enforced and maintained with the particular needs of your child in mind. “We don’t do that,” for example, is not an individualized response. If your school has never had a child like yours (and since your child is an individual, they haven’t), and now they do, and a service is appropriate to his or her needs, then they do do that now.”  (online source)

That sounds easy, right? WRONG.  Schools don’t like to give out IEPs.  Why? Money.  Accommodations, modifications, assistance, tailoring curriculum, putting the “individual” in the education plan? That’s costly.  So, schools rely on federal and state guidelines to limit access to the IEP.  Now, this can be a good thing.  Like it or not, there are parents out there with Perfect and Unique Snowflake Syndrome (PUSS).  PUSS-afflicted parents bang down the doors of their educators and school boards demanding special testing and accommodations for their beloved Perfect and Unique Snowflakes (PUSes).  Why? Because it’s evident that they are gifted, talented, and, above all, being held back by the inadequate educational offerings of the school.  They must be, therefore, evaluated immediately and put on an IEP! Pronto!! Of course, they have a point.  Funding to Gifted and Talented Programs are being slashed left, right, and center.  Class sizes are too large, and teachers are unable to perform their jobs to their utmost.  Yes, it’s true, many school districts across the nation are losing almost all of their arts programming, and valid scientific theory is being replaced by creationism in parts of the country as well.  Clearly, there are worthy fights on the educational front, but, for the parents out there engaged in competition parenting who worship their ‘Golden Children’, nothing is more important than the rights of their delicate snowflakes–unique, gifted, and entitled.  The individual rights of the PUS trump everyone else, and this is one very valid reason why schools and school boards hide behind federal and state guidelines to the point of depriving children with very serious special needs the public education that federal and state law mandate they provide.  After all, even those kids are perfect and unique…just like everyone else.

So, what’s the truth about these federal and state guidelines? Oh, they are labyrinthian in nature, and, if your SPED evaluator is anything like mine, then s/he will impress you with what appears to be a great depth and breadth of knowledge concerning these statutes.  Looks, however, can be deceiving.  Let me acquaint you with Wright’s Law and IDEA–The Individuals with Disabilities Act.  They will become your two best friends should you ever have a child with special needs who needs an IEP.

What actually happened yesterday at my second IEP meeting? It goes like this.  The SPED evaluator (Special Education evaluator) arrived.  She didn’t want to wait for everyone on the IEP team to arrive so she tried to start the meeting early.  That’s never a good sign, and it goes against protocol.  The school psychologist arrived next.  Those two talked as if they were bosom buddies.  It was a good observation to make.  Pay attention to things like that.  The district representative was next on the scene.  She’s a speech pathologist, but she’s on special assignment.  We’ve had the most one-on-one conversations.  The assistant principal made an appearance, and a school counselor spent some time in the meeting, too.  One of Grace’s teachers, who has been recording her own observations, came as well.  This is what typical IEP attendance looks like.  I brought along an advocate who happens to be a friend because I had a feeling I was going to be politely bulldozed into submission.

It’s important to pay attention to the tone of the meeting.  Is there concern for your child? Take note of who shows concern and who doesn’t.  The goal of this particular IEP meeting was to decide if an IEP evaluation would be done.  Essentially, does Grace need an IEP, and, if so, what kind? This is where those federal and state guidelines I talked about come into play.  There are all sorts of IEPs.  The IEP team wanted to evaluate Grace using Emotional and Behavioral Disturbance criteria (EBD/IEP).  Because each IEP has its own set of criteria, the guidelines under the law are different for each depending upon the disability whether it be autism, a traumatic brain injury. a learning disability, or even ADHD.  I threw out the idea of an Other Health Impairment IEP (OHI/IEP) because many children with Bipolar Disorder fall into that category.  I was immediately rebuked by the SPED evaluator: “Oh no.  The state guidelines forbid us from classifying a mental health condition under an OHI because that is only used for ADHD.”  Remember what I said about evaluators who seem to have a great depth of knowledge of the federal and state statutes, but, in reality, do not? That’s what happened right there.  Either she was lying, or she had misunderstood the statute because her statement was completely false.

I must pause for a moment and explain that this is another instant where it becomes important to know The Lingo except I’m not speaking of medical vocabulary; I’m talking about legalese.  The statutes and jurisprudence surrounding IEPs and disabilities in an educational settings may not be reader-friendly.  In fact, reading legal documents, statutes, and precedents can be downright hard, but it’s a necessary evil particularly when those with authority in the school district use state and federal guidelines as a means to gatekeep and prevent children from getting the services they need.  What’s more, many of these individuals aren’t even reading the laws correctly.  They are in violation of IDEA.  This is illegal.

A tip: Be a fact checker.  If you leave an IEP meeting, and one of the evaluators makes exclusionary statements using federal or state guidelines to back it up, then double check it.  As soon as possible.

I was placated and pandered to.  My friend did a good job trying to explain to this group of well-meaning people that childhood-onset Bipolar Disorder with schizotypal features was exceedingly rare, but they still looked at us with tremendous…hubris.  They were going to have the school nurse review her records.  The school psychologist was going to question her.  The SPED evaluator was going to evaluate her.  They wanted to do a functional behavior analysis of Grace. The school psychologist droned on:

I’ll observe her in class.  We’ll talk about some behaviors, what precedes these behaviors, and what to do about them.”

I took a deep breath.

“You don’t understand.  None of you have been paying attention to me.  You want to talk about her behaviors and what precedes them? How can I explain a schizotypal child to you? They have flat affect.  There is little to no congruity between their inner and outer realities.  Do you know what my daughter did a few weeks ago? She was roaming about the house looking placid.  She then went into our kitchen and stabbed herself in the hands and wrists all the while looking peaceful.  She then sat down five feet away from me, bleeding.  I took her to the Behavioral Health ER that night, for the second time in a month.  She really didn’t cry.  She thinks that there are three men following her everywhere she goes.  She thinks that they are in her classroom, watching her.  She hides in the school bathroom to get away from them.  You observe her anxious looking gaze, her eyes darting about, and think that she’s got a case of nerves.  What you’re really seeing is psychosis–paranoia.  What if she snapped in class? What if someone walked in who looked like one of the men that she thinks is following her? What do you suppose she would do? I have a safety plan on my fridge.  I’ve been told to replace all the cutlery in my house with sporks.  Schizotypal Bipolar Disorder is not ADHD! You are not equipped to evaluate her! She won’t talk to you anyway! She’s paranoid!”

They just stared at me.  “Can’t you hospitalize her?” And, there it was.  Put her away.  Institutionalize her.  “No, I can’t.  Even if I wanted to, who would take her? If a child isn’t ideating at the very moment, then they are released.  Grace was released two hours after she stabbed herself.”  That’s how naive they are.  The best psychiatric minds in my state will be working with Grace, and they all tell me this: “This has to be one of the most complex cases we’ve ever seen.”

Currently, the Lamictal isn’t at a therapeutic dose yet.  She is still paranoid.  No one knows if she’s got prodromal schizophrenia or not.  It’s looking like Schizotypal Bipolar Disorder which is exceedingly rare in children.  Like..RARE.  She is unable to attend school for more than 3 hours a day.  She is currently in a migrainous cycle so she’ll miss the entire week.  Her school is in violation of IDEA.  She is being deprived of an education and not one person on that IEP team expressed concern or sorrow for that, and that’s the whole point of the IEP–to see to the education of a child.

They are still arguing over whether or not she needs one.

Does this tell you anything about how hard it is to get an IEP? It’s lunacy.  Hubris, arrogance, and a total disregard for the welfare of a child.  Fortunately, I am not without resources.  If the woman at the helm of this evaluation continues to cite federal and state law incorrectly, thus, using it to justify depriving my daughter of an education, I am able to up the ante.  The school district will not enjoy that experience.  Frankly, nor will I.

What about those parents, however, who have little to no resources? Who don’t speak English? Who don’t have the intellectual capacity to read statutes and jurisprudence? Who don’t even have access to the Internet? Who actually believe the school district is on their side when it comes to the IEP process? What do they do? What do their children do?

No, this process is far from over.