What is Neuropsychological Testing?

I’ve mentioned in past posts the necessity of neuropsychological testing in diagnosing schizophrenia spectrum and bipolar spectrum disorders.  People often hear this, nod, and then walk away asking, ‘What the heck is she talking about? What is neuropsychological testing?”

Well, let’s talk about that.  I finally have Grace’s written report in hand from her testing, and Eadaoin and I completed her intake for her round of neuropsychological testing yesterday.  Why even bother with this sort of testing, and why is it necessary?

Let’s define it.  What is it? There are a few definitions out there.  Here’s a short one:

Neuropsychological assessment is a performance-based method to assess cognitive functioning. This method is used to examine the cognitive consequences of brain damage, brain disease, and severe mental illness.

Here’s the best one I’ve found:

Neuropsychological evaluation (NPE) is a testing method through which a neuropsychologist can acquire data about a subject’s cognitive, motor, behavioral, linguistic, and executive functioning. In the hands of a trained neuropsychologist, these data can provide information leading to the diagnosis of a cognitive deficit or to the confirmation of a diagnosis, as well as to the localization of organic abnormalities in the central nervous system (CNS). The data can also guide effective treatment methods for the rehabilitation of impaired patients.

NPE provides insight into the psychological functioning of an individual, a capacity for which modern imaging techniques[1, 2] have only limited ability. However, these tests must be interpreted by a trained, experienced neuropsychologist in order to be of any benefit to the patient. These tests are often coupled with information from clinical reports, physical examination, and increasingly, premorbid and postmorbid self and relative reports. Alone, each neuropsychological test has strengths and weaknesses in its validity, reliability, sensitivity, and specificity. However, through eclectic testing and new in situ testing, the utility of NPE is increasing dramatically. (online source)

One of the primary reasons why a person might get an NPE is to confirm a burdensome mental health diagnosis particularly if that person is a child.  For example, if one suspects that a child has early-onset bipolar disorder, then evaluating the neuropsychology of the child should be part of the diagnostic process because there are specific neuropsychological markers, specifically executive function deficits, when bipolar disorder is present.  It is irresponsible to diagnose a child with bipolar disorder and subject them to the medications without having included an NPE in their diagnostic process.  The same is true for a schizophrenia diagnosis.

In the context of a schizophrenia spectrum disorder particularly in childhood-onset (COS), the NPE needs to be one of the tools used every two years until the disease process/prodrome settles which isn’t until after the first five years of onset and/or the child reaches eighteen to twenty years of age.  COS is a severe form of schizophrenia.  The earlier the onset, the harder the child is hit particularly in cognition.  Recall that schizophrenia is defined as having three categories of symptoms: positive, negative, and cognitive. (See Clearing The Fog)  This is where the NPE becomes highly valuable.

Grace had her first NPE when she was seven years-old.  That can be unusual because most neuropsychologists won’t perform an NPE on a child so young, but I can be very persuasive.  Grace was completely unable to read, and I was trying to convince a school board to grant her an IEP.  I won because I had an NPE from a reputable hospital.  Her next NPE was done when she was ten years-old at the very beginning of COS although we didn’t know that we were observing that.  Her next NPE was a few months ago.  The neuropsychologist was thrilled to have three data points to chart, and the results were indeed stunning.  On the graph, starting from age 7, there was a decline in very specific cognitive functions.  In certain areas, she is growing normally–verbal skills.  In other skills, she is not just below average; she is impaired.  That is a marker of disease progression known as regression.  Remember, schizophrenia is a neurodegenerative/neurodevelopmental disease like MS.  It isn’t like depression or even bipolar disorder in that the brain itself is largely unaffected in structure, size, or density.  People with schizophrenia lose white matter, and they lose the most white matter in the first five years of disease onset.   So, a child with COS is doubly hurt because their brain is growing and developing while degenerating at the same time.

The NPE is vital in a treatment plan because it allows parents, caregivers, educators, and clinicians to see exactly where the impairments and regressions have occurred.  This allows for a very specific course of treatment and therapy to be created so that the parts of the child’s brain that are growing and developing normally can be taught to compensate for the impaired areas in addition to aiming treatment at the impairments.  Knowing the exact nature of the impairments also elucidates the etiology of certain behaviors.  What might look like panic attacks or tantrums may actually be a function of poor executive function and a deficit in working memory.  A thorough NPE will reveal that.

Grace will receive another NPE in two years.  Her neuropsychologist was very clear with me.  She placed herself on Grace’s team and all but demanded that she see Grace again in 24 months for another round of testing.  Because Grace’s results were so stunning and because Eadaoin is struggling with mood and working memory issues, the neuropsychologist made an exception for our family and insisted that she be evaluated as well.

The question that most people ask about the NPE is “Will insurance pay for it?”

That depends.  If it’s solely for the purpose of diagnosing a learning disorder, then no.  They consider this an educational issue and leave that to the schools to do.  That’s what an IEP evaluation is for, so say insurance companies.

Grace’s NPE, however, was covered entirely by insurance because her neurologist ordered it, and it is being done for the purpose of tracking regression and disease progression.  Due to family history and possible diagnosis of a mental health disorder, Eadaoin’s NPE is also being paid for by insurance.  It will also help her obtain an IEP.

So, what kind of tests are involved in this so-called neuropsychological assessment?

For general intelligence, the WISC-IV, VCI Subtests, PRI Subtests, WMI Subtests, and PSI Subtests.  For memory, WRAML-2 and CVLT-C.  For Visual-Spatial/Visual-Motor, VMI.  For social perception, NEPSY-II and CASL.  For attention and executive function, Conners’ CPT-2, WCST, D-KEFS, Trail Making Test, Color-Word, Verbal Fluency.  For achievement, WIAT-III.  For motor, grooved pegboard.  For adaptive behavior, ABAS-II (parent), ABAS-II (teacher).

Part of the NPE does involve teachers and parents answering questions, too.  It is a long process.  It takes a few months to complete, but it is worth the effort.  The NPE is also useful for children, teens, and adults with autism spectrum disorders and even ADHD as ADHD affects working memory and executive function.  There are many reasons to seek out an NPE, but, in the context of mental illnesses like schizophrenia spectrum disorders and bipolar disorder in children, the NPE becomes a vital tool in contributing to a solid treatment plan that not only brings stability to a child or teen but also provides direction into how to specifically treat a person so that they can thrive.

 

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Living The Dream

Life is a strange, circuitous road sometimes full of detours, cul-de-sacs, pit stops, and unexpected turns.  Just when you think that you know where you’re going, something happens.  The car breaks down.  The road is closed.  You find out that Google Maps was wrong, all wrong! You should have taken that left turn at Albuquerque.

Sometimes you just have to go with the flow even if you don’t like where the flow is going.

I always think I’m going with the flow until the flow fights me.  It is then that I realize that I’m trying so very hard to push the river.  That seldom works out.  Have you ever tried to push a river? You drown.  So, I metaphorically relaxed into the circumstantial flow and went with it as much as I could.  This is not me.  I fight.  I push.  I fix.  I am the embodiment of ambition at times.  I have to be.  It’s how you get things done.  It’s impossible to care for a child on the schizophrenia spectrum with no ambition while compensating for a spouse who is completely avoidant.

It isn’t sustainable.  This is what my therapist told me last winter.  I would not be able to sustain that level of energy expenditure or a relationship longterm.  My response? I have to.  If I don’t, then who will?

She predicted I would become ill.  She predicted that my marriage would fall apart.  She was right.  In the midst of all these revelations, however, I think I can almost feel gratitude.  It had to stop.  What fills in the gap then?  The overcompensation had to end to be sure, but what does one do with that information? Life has a way of forcing solutions sometimes.

Eadaoin’s therapist called me yesterday.  She is referring Milly to the crisis stabilization program.  Jane will be back in our house again.  Both Grace and Eadaoin have used that program in the past.  It allows for immediate in-home access to mental health services and a fast track to psychiatric services.

Milly has an anxiety disorder in addition to an autism spectrum disorder and sensory processing disorder.  She is not doing well.  She has been writing me letters daily expressing her anxious thoughts and waking up in the morning saying, “Sometimes I wonder if it would be easier to die so that I wouldn’t have to feel so anxious.”  Grace has been picking fights with Milly daily because she can’t self-direct.  Grace really needs day programming in the summer, but there is none.  Summer is unpleasant in our house.  We have a lot of mental health needs, and I can’t cover it all alone.  So, I do a lot of behavior management, and Milly is losing her ability to cope with Grace’s behavior.  I don’t blame her.  There are days I’m there as well.

During this phone call, Eadaoin’s therapist was honest.  She indicated that it was time to throw a lot of resources at our family, in part, because I had been the sole therapist and case manager for too long, and we needed support.  I didn’t have to manage a child with schizophrenia, a child with autism, and a teen with a mood disorder on my own in addition to a new health diagnosis.  She kindly mentioned my husband as well.  “You are not alone in this.”

I want to believe that.  These past few years have been indescribably difficult, and they didn’t have to be as hard as they were.  Had I had a partner in this, the journey would have been far more meaningful and so much less isolating, but, at the same time, I’ve shared this with friends.  Bonds have been formed indeed.  Unfortunately, they have not been formed with the right person.  We deepen our connections with others through ordeal.  We also lose those connections through ordeal.  It all depends on what happens during those trials.  Do we draw near or isolate? Life is predictable, however, in that it will always provide us with opportunities to try again.  Circumstances are always fresh with ordeals, great and small.  We will always have another chance to try again and put into practice what we learned.

Such is the case presently.  I have another chance to practice self-care.  My husband has another chance to practice being a partner.  I begin another little jaunt with a bit of a limp because I have a flair for the dramatic.  Next Monday, I have the profound pleasure of having a local anesthetic injected into my right hip joint.  It sounds terribly exciting, I know.  You are all lining up behind me to experience what is sure to be some kind of euphoric bliss.  Should, as my Scandinavian orthopedic surgeon said, the angels sing and I feel no hip pain after said injection, I have to have hip surgery! Clearly, I am the female equivalent of Rip Van Winkle.  I have aged thirty years in six months since I have a hip injury and no clear idea as to how I achieved it.

So, in the name of self-care, I have already lined up someone to clean my house because I really have lain in bed and dreamed that my whole house was clean.  As Doireann said yesterday after I received my estimate, “I feel like this is your wet dream, Mom.  Having someone come and clean your house.  Yeah, you should totally do this.”

It is my wet dream! So, I’m starting there.  My husband has his first intake appointment ever on Thursday (Mwahahahahahahahha!) with his new therapist.  Milly will be getting some much needed services.  Eadaoin is still chipping away at DBT.  Grace is immersed in her services.  Doireann is processing her life experiences, and, apparently, I will be reaching the heights of pleasure while watching someone else clean my house while I wait to find out the fate of my hip.

I’d say that’s a typical summer for us…

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Leaving Neverland

There is a tendency to minimize and keep secrets when painful things are going on.  We all do it.  Big secrets.  Little secrets.  There are many reasons why we deny or don’t tell the truth.  We’ve learned that people don’t really want to know, or, at least, we believe that they don’t.  So, when people ask how we are we just smile and say, “Fine.”

I’ve made this a lifestyle.  I haven’t been behaving like a martyr.  I just really believed that I could handle it all, and I didn’t realize the depth of the issues at hand.  I wasn’t sure that there was really anything to handle.  I really did believe I was fine! I didn’t discern how powerful my husband’s behavior actually was and how perceptive my children were.  Kids don’t miss much, and I know that.  I was a kid once.  I didn’t miss much either.  I was trying to make sure that everyone was okay.  I wanted everyone else to have what they needed.  I thought that I had a partner who had my back.  I think that he thinks he does, but my children don’t.  What do I believe is true?

When you grow up with extreme intensity, your “normal meter” is often skewed or even broken.  Abnormal behaviors are normalized and normal behavior is labeled as abnormal.  Healthy expectations are labeled as ‘too high’ and having expectations altogether often becomes dangerous.  This doesn’t happen overnight.  There is a slow creep to this dynamic as well as a cycle.  It’s tempting to ask, “Why did you marry someone like that?”  Ask anyone in a relationship with an avoidant personality what their spouse was like before the wedding and they’ll tell you one thing: s/he was amazing before we got married.  The personality changes come after the honeymoon.

The good news here? Remember what I said about those mental health professionals? Well, Eadaoin sees her therapist every Monday, and yesterday she talked about her high anxiety response when discussing her relationship with her father at her psychiatry appointment.  Her therapist listened carefully, and then asked if she could speak with me alone.  I thought she wanted to discuss Eadaoin.

Nope.  She wanted to talk to me.  About me.  She didn’t hold back.  She wanted me to be honest.  Was I okay? What was the truth? I just received a serious diagnosis.  I have a child with a serious mental health diagnosis.  I have Eadaoin.  I have another child with an autism spectrum diagnosis.  I have another daughter entering her senior year.  I have no family.  How much more could I expect myself to handle? Well, that was surprising.

She insisted that I get myself back into therapy.  She’s working on a referral.  She’s not taking no for an answer.  Then, she turned the topic to my husband.  She’s not letting it go.  He needs help.  What he’s doing isn’t okay.  It needs to stop.  She’s brainstorming.

So, I told the truth.  I told a professional the truth.  I’m not sitting on my hands.  I’m not doing nothing.  I’m doing something.  An ultimatum is coming soon, I think.  If I don’t take action, then nothing will change.  He will have to go to a psychiatrist.  He will have to go to individual therapy.  We will both have to go to marital therapy.  I know that he’s afraid because he fears that I will wipe the floor with him.  I find this both amusing and sad.  Yes, I could wipe the floor with him in a therapy session.  He’s spent the last nineteen years treating our family as an option.  To know me, however, is to know that I would never do that.  I have never once attacked his character or personhood.  That’s his game.  Not mine.

I will be honest.  I wanted to cry today, but now is not the time.  Now is the time for action and getting all the ducks in a row.  I almost feel bad for him.  Almost.  Change is hard.  Being held to account by your wife, your daughters, and a community of mental health professionals will be shocking.

It’s time though.  One can only avoid growing up for so long.  Eventually, one has to leave Neverland.  I didn’t dream of marrying Peter Pan after all.  I wanted Mr. Darcy.  Okay, okay, or the Dread Pirate Roberts.  But now, I’ll settle for a healthy adult who wants to be here.  Alright, I’ll admit it.  I don’t want to be with Mr. Collins either (tip of the hat to Pride and Prejudice).

It’s good.  It’s good to know that you’re not alone, isn’t it? And one’s humor is still intact.

Can we say that I’ll settle for Mr. Emerson? (thank you E.M Forster for giving me Mr. Emerson and Room with A View.  I survived adolescence because of that book.  Well, and The Princess Bride)  Maybe I need another grand story to get me through this time, too.

O Jamie Fraser, I hear you calling my name…(Diana Gabaldon’s Outlander series)

Thank you, dear readers, for putting up with me.  That’s all I can say.

Thank you.

 

A Confession

I have been silent.  I haven’t meant to be.  I love blogging.  I have been trying to find my voice.  I didn’t lose it.  I just found all my energies drawn into other places.

I was diagnosed with Lupus.  All the testing was completed.  It takes time.  I’ve been very tired.  I’m not surprised.

I injured my hip.  I feel elderly just admitting that.  Limping around the house and about town has gotten old.  I had an MRI last Friday.  My lovely rheumatologist will call me with the results.  There’s nothing like a hip injury and a Lupus diagnosis at the same time to make one feel terribly mortal.

This is not what is emotionally exsanguinating me.  It’s something else that I don’t speak about here.

It’s my husband.  I’m not sure why we silo off our lives as we do.  Is it because we fear telling the whole truth as if somehow that will make it all the more real? Is it shame? Do we become so familiar with patterns of behavior that we normalize them? Is it all of the above?

My husband is very passive aggressive and avoidant.  Since Grace’s diagnosis two years ago, it has reached epic proportions.  It has become punishing.  I have overcompensated for this for as long as we’ve been married.  I thought that if I tried harder, made excuses for it, lost weight, gained weight, looked prettier, kept a perfect house, made perfect meals, left him alone, let him do whatever he wanted, justified his behaviors, explained them to the kids, or ________ (fill in the blank) that he would get better.  He would change.  He was just tired.  He had worked hard.  He just needed something else.  More time alone.  More space.  More of something that he wasn’t getting, and I made it my goal to find it, get it, and provide it.  Essentially, I enabled it.

I tried every sort of communication that I knew.  He only said that no matter what he did he just couldn’t make me happy.  It was my fault.  So, I swallowed it.  I didn’t ask for anything.  I stayed out of the way, but I couldn’t stay quiet when he directed it at the girls.  I wouldn’t do that.  And, looking back, I can see the cycle.  He withdrew.  He punished.  I tried harder.

Doireann told me last week that I could stop overcompensating for him.  She knew what I was doing, and she could see what it was doing to me.  She knew that I was sick because of him.  I was shocked.  All this time I’ve been trying to keep it under wraps.  She knew? She told me that she didn’t want him to die, but, if she had to choose, he could.  She really just needed me.  Our family would be fine without him.  I was stunned into silence.  “What does he do around here outside of working anyway?” she nonchalantly asked.

I took Eadaoin to see her psychiatrist last Friday.  Eadaoin has been cutting again, and her psychiatrist wanted to talk about it.  She wanted to dig deeper into the issues behind the cutting.  She mentioned that some of the deeper seated issues behind cutting are often rejection and abandonment.  Eadaoin was silent.  She didn’t want to talk about it.  I mentioned her dad.  We talked about it anyway.  Her psychiatrist talked to me.  It became a family session.  We were there for an hour.  I wanted to protect Eadaoin.  I didn’t want her to know just how deep this issue really went for me.  Her psychiatrist told Eadaoin to continue to develop insight into her motivation for cutting.  She then turned to me and said, “You don’t have a relationship.  That’s not what you have there.”  I just quietly said, “I know.”

On the way home, Eadaoin said, “You can stop explaining away what he does. I’m done with him anyway.  He’s ignored me my whole life.  I’ve got you.  That’s enough.”

And then she came home and threw up in the kitchen sink.  She was so sick to her stomach what with having discussed her dad with her psychiatrist.

Grace asked me yesterday if it was her fault that her dad was always in our bedroom.  She wondered what he did in there all the time.

Sometimes life moves slowly.  Sometimes it comes at you so fast that you can’t keep up.  I’m not keeping up right now.  I have always known that something was wrong.  I think that I’ve always believed that the problem was me because that’s what I’ve been told.

  • You expect too much.
  • You’re broken because of your past.
  • I try so hard and nothing is good enough for you.

I just realized that it’s not me, and three of my daughters are coming forward separately at the same time confessing the same things.  We are not crazy.  It’s not us.

It’s hard to talk about difficult things.  I know this.  I’ve lived with this for a very long time.  I feel like I’m walking on ever-shifting ground.  I don’t know what to expect.  I’m very anxious.

There are resources.  I’m starting here.  My first line of defense is always to educate myself.  I cannot fix him or make him change, but I can change what I’m doing.  I have played a role in this.

I am certainly not the first person dealing with caregiving to come forward with the, “OMG! My marriage is falling apart!” This is the reality of experiencing high pressure within a relationship.  If there were problems there before that were flying under the radar, then you can bet they won’t stay unnoticed for long once a life-altering illness enters the scene.  You simply can’t overcompensate for a spouse once you are forced to do so for an ill child.

You will end up with an autoimmune disease.

So, here are some resources in case passive aggressive personality issues are at play in your neck of the woods:

Do you know what the good news is here? I know a shitload of mental health professionals now.  All I have to do is pick up the phone.  I know that, in this sense, I’m not alone in this situation.  I know where to go if I need help.  And, I’m pretty certain that I will need some help getting my head screwed on straight at some point in the near future.

An Ode to Mindfulness

Sometimes I’m bewildered.  It’s a challenge to stay in a positive head space during the summer because everyone is home.  Grace is here, and she’s usually pacing the house, roaming, hovering, staring.  She needs constant shepherding.  She does not self-direct easily.  Her body is growing, but her mind doesn’t seem to grow with her.  This is the hardest part for me to observe, and she is aware.  Sometimes she cries.  She knows that something isn’t right.  This is why summer is hard.  There is too much time.  Time to reflect.  Time to notice.  Time to wonder just what is wrong.  Time to play with friends who seem to be surpassing her in every way.

I want to be the Goblin King and whisk her away to another land where time stands still.  She will stay as she is.  She won’t deteriorate any further.  She won’t know what it is to watch more friends leave her behind.  She won’t know stigma.  She will keep her dreams of marriage and children in her hands like delicate soap bubbles and let them float around her on the breeze of her hope and imagination.  She won’t suffer.  She won’t fear imaginary creatures that only she can see.  She won’t be blunted and delayed by harsh medications and loss of white matter.

She would always be her.  As she is.  As she was.

Sometimes it is hard to live in the moment.  It is hard to see her as she is now because I remember her as she was, and they are no longer congruent.  This is a hard reality for me.  There is no getting around this.  Grief is the passageway.  I’ve written about grief before, but I suspect that grief is a lifestyle when one is caring for a child with a neurodegenerative disease.  A part of me wants to turn my eyes away and say, “This can’t be.  This isn’t permanent.  She will bounce back.  This will remit.”

It won’t.  It will progress.

This is very hard to accept.  I don’t like it.  It is painful for me to accept this reality even though it’s in my face daily.  Why? Because I fight.  I fight everything.  I will probably die fighting something, and this is why the DBT skills group that I’m taking with Eadaoin has been so excellent.  One of the core concepts of DBT is radical acceptance.  Radical acceptance is a very hard concept for me to practice because it feels too much like giving up, and I simply don’t do that.  Never give up.  Never surrender.  This is my mantra.  It is how I have survived some extreme environments in my life.

There comes a time, however, when we must accept certain realities.

You cannot change anything about how you got here.  You are here.  Grace is here.  No matter how hard you fight, she will still have schizophrenia.  You can fight it, or you can accept it.

I don’t know why writing that out undoes me, but it does.  I feel completely helpless.  This is one of the hardest parts of practicing mindfulness.  A friend joked with me in passing that mindfulness was for pussies.  On the surface, it does look like that.  It certainly sounds like a benign word and a relatively kind practice.  One conjures images of candles and Buddhist monks.  It is anything but that.  Mindfulness is ruthless.  Sitting with yourself.  Being present to your feelings however uncomfortable, painful, or overwhelming they are is extraordinarily difficult.  Choosing to completely and wholly accept the things in your life that you cannot change requires you to engage your entire will and character.  Practicing being present forsaking maladaptive daydreaming and poor coping strategies in favor of better ones can feel almost tortuous particularly when your present life feels like a nightmare at times.  Mindfulness is like that sharp, bitter, little pill that I have to swallow because, honestly, there are times I’d rather be anywhere but here.  It is extremely hard to care for a child with mental illness, an autistic child, and another child with a probable mood disorder.  It is extremely intense, and it requires intense focus and determination not to mention an endless well of patience.

I can do this most of the time, but there are days when even the best of us requires a break.

This is why mindfulness is so important.  If we are present to ourselves, we’ll know our own rhythms and recognize what we need before something awful happens like this (click link).   Mindfulness promotes personal responsibility and prevents us from acting like martyrs and victims of our circumstances.  That is the last thing I want to perpetuate.  I may become bewildered.  I may feel overwhelmed.  I may feel grief.  There are days that I might even want to run away to my own personal island where I am served by two cabana boys named Hector and Jorge and ride a horse named John.  What I really want, however, is to create an environment in home, life, and heart that is big enough to answer this call:

“What we owe a mentally or physically disabled [person] is not ask why God permits this, but to ask ourselves what kind of community we must be so that this person can live as full a life as possible.” Howard S. Kushner, The Book of Job: When Bad Things Happened to a Good Person

And so we engage in our own process, whatever that looks like, so that we can rise to the challenge of being a source of goodness, kindness, and compassion to those around us who need it always remembering that we ourselves need it, too.