The Executive Decision

We are a very forgiving household.  This is why almost all my daughters’ friends spend their time here.  It’s also why most of them call me ‘Mom’.  I feel too young for that.  Or, I feel like someone’s mother-in-law.  “Hey Mom!”  It’s a weird feeling to have multiple teenagers call you ‘Mom’, but it’s a sign of affection and respect.  It’s also a sign that their own home lives are lacking in something.  They feel comfortable here.  One young woman comes here to sleep.  Her home environment is highly abusive.  One of her family members has tried to strangle her in her sleep numerous times.  She, therefore, doesn’t sleep well if at all at her house so she comes here from time to time just to sleep.  She slips out quietly in the morning.  I’ve called CPS twice about that situation to no avail.

Another girl comes here to be herself.  She is forced to care for her younger brother who by all accounts meets the criteria for having some sort of developmental disability.  Her parents work all day so she must be his caregiver.  She’s a senior in high school this year, and she’s getting out.  She comes here for a break.  Being a house full of girls, we usually get only girls coming here, but, on occasion, we do get a boy.  He is a transgender boy.  His parents hate him.  They “forget” to pick him up and neglect him.  They ignore him completely.  They gave him a Bible for Christmas.  That’s it.  He comes over to our house occasionally but largely keeps to himself.  He’s skittish and shy and understandably so.  He’s being emotionally abused by his family.

All this is to say that I see a lot of behaviors come and go.  I hear what many adults would deem “inappropriate talk”.  One identifies it and moves on.  Most kids who come here want to be better particularly the ones who call me ‘Mom’.  They want to be respectful.  They, however, may not know how to be because they haven’t been taught well, or they haven’t been given enough real opportunities.  No one has believed in their goodness enough to give them a second or even third chance.  Everyone fails.  Everyone needs to be given opportunities to try again.

There are kids who come here, however, who do not want to be better.  They do not really care.  They have learned to be exploitative to get their needs met, and they’ll display rather cruel behaviors in unexpected ways.  That happened last weekend.  Eadaoin needed help with a school project so she invited one of her newer school friends over to spend the night.  Her name was Lauren.  Lauren was initially quite friendly and extremely talkative.  She talked so much, in fact, that I couldn’t get a moment’s peace.  Wherever I went, there was Lauren.  Lauren in the evening.  Lauren in the morning.  Lauren in the afternoon.  Lauren did not pick up on social cues either, and Lauren spoke very openly about her alcoholic stepfather and his abuse as if it were normal: “You know how adults are.  They drink when they’re stressed.”  She then went on to recount how she, her siblings, and her mother had to leave one night to get away from him.  I just nodded my head and listened.  There were other stories she told about her friends that raised red flags.  To her, it was all fine.  Good.  She was perfect.  Her life was great.

Grace’s friend, her former BFF, came over as well.  That friendship has been evolving as middle school friendships do.  She has been less than kind to Grace during the last year and a half displaying relational aggression.  We’ve been unsure how to handle it.  Does Grace end the friendship? Should she talk to her sometimes? Wanting to believe the best about her, she didn’t want to simply write her off.  These are important decisions for young people.

Grace came to me on Monday morning crying.  She told me that Lauren and her former BFF had called her ‘stupid’.  She had been trying to keep up with them in a board game, but she could not.  This is a reality for many young adults with schizophrenia spectrum disorders and for people taking certain drugs.  There is cognitive slowing.  It can’t be helped.  When she wasn’t able to process the game as fast as they thought she should, Lauren laughed at her and said, “You are so stupid.”  Her BFF laughed at her, too, and said, “Yeah, you are so stupid!”  They then went on to laugh at her together.  It didn’t end there.  Someone began teasing her for not being as physically developed as other girls.  “So, when are you gonna get your boobs?!”  And, that’s when the pointing and laughing really started.

As a mother, I felt something rise up in me that might be called rage.  As a woman who has watched other girls victimize girls in this way, I wanted to punch a hole in my wall.  As a host, I wanted to take these girls and shout at them, “How dare you treat my daughter like that in MY house!”  I did neither of these things.  I had to sit there and collect myself.  I had to take deep breaths.  I wanted to cry on her behalf.  Her face! She just stood there full of shame, tears collecting in her eyes.

At what point do we say, “No more.  That person can no longer come here”? I had to ask myself that question.  I may be called ‘Mom’ by a lot of these kids, but I am not their mother.  I had to remember that.  I am, however, Grace’s mother, and she is vulnerable.  So, I made an executive decision.  “Grace, BFF can’t come here anymore.  She is displaying a pattern of cruelty when she comes here.  I’ve talked to her about it more than once, and she won’t stop.  You cry when she leaves.”  I talked to Eadaoin about Lauren.  She might be a perfectly appropriate “school friend”, but she is not going to be a good choice for bringing home.  She lacks compassion and empathy.  I am truly sorry that she is enduring abuse at home.  That is probably why she has learned to normalize abuse and why she is repeating those behaviors.  She is merely doing what has been done to her.

These red flags, however, must be observed, and we have to follow our instincts.  This is how we learn to make good choices in our relationships.  If I don’t want to raise my daughters to tolerate abuse in their relationships, then I have to make the tough decisions about who will and will not come here.  They have to know that they are worth something.  They are worth more than something.  Do they want to hang out with people who think it’s funny to bully and call vulnerable people names? Do they want to be with girls who engage in relational aggression? This is how we develop a conscience in our children.  We point out these behaviors and ask them what they think.  In the end, Grace cried out of relief.  She had not wanted BFF to come to our home anymore.  She simply didn’t know what to do about it.  She was glad that I made the executive decision for her.  Eadaoin understood, too.  She said that she didn’t realize that Lauren would behave so badly, and she apologized to Grace.

It was a very fine line for me to walk.  I remember being 16.  I tied my identity to my choice of friends.  If my mom didn’t like my friends, then she didn’t like me.  I had to be so careful in how I talked about Lauren to Eadaoin.  I wanted her to know that she could still make good decisions.  I still believed in her, and I didn’t view Lauren as ‘all bad’.

I keep waiting for life to get easier, but I think that’s magical thinking.  I think we just need to increase our stamina.  Life is the ultimate marathon.  People praise and admire those who finish the IRONMAN triathlon or the Leadville 100.  I think finishing life well should not go unnoticed.  It is the greatest test of character, will, and endurance.  Feel good about yourself today.  You showed up for your life.  I guess now it’s a matter of how we show up, isn’t it?

 

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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.

 

 

 

The Empowered Caregiver

I guess today is the day for more than one post, but this is for your edification.  I haven’t gone into too much detail about my appointment with Grace’s neuropsychologist yesterday.  Surprisingly, I couldn’t bring myself to talk about it.  I am a verbal processor, but I was simply too upset by the test results to speak about them yesterday.  I had to hold back tears yesterday when I shared the results with my husband.  My husband, being a dude, was very pragmatic: “Well, Jules, we knew, didn’t we? Now it’s confirmed.  Now we know.”  I couldn’t get there.  My emotional self was ruling over me yesterday.  My thinking self was standing in the corner.  I couldn’t find my wise self.

Basically, the neuropsychological testing has provided us with a great deal of data that show that Grace is now cognitively impaired.  It is severe.  The good news here is that the doctor who did all the testing is absolutely fantastic.  She explained that she went very in-depth with Grace, well beyond the testing that was done two years ago.  She also spent a great deal of time digging through all the current research on neurocognitive decline in schizophrenia spectrum disorders.  She is now adding herself to Grace’s care team, and she insisted that she see Grace again in two years for another round of testing.

It is not characteristic of me to be pushy.  I have to work very hard to be assertive.  I prefer not to be the center of attention in groups although if no one will speak I will speak first as is typical for an only child.  I, however, have always been unusually assertive where Grace has been concerned.  I had a weird intuition about her from Day 1.  For example, I spread out her vaccinations so that she received one at a time because I had a weird feeling.  As it turns out, she was violently allergic to the Prevnar vaccine.  As a baby, she had a 105 degree fever for four days, a swollen face and lips, febrile seizures, vomiting, and a rash all over her body due to that vaccine.  I would never have known what vaccine caused the reaction had I not insisted that she receive them all separately.  She would have died had she received it a second time.

When she was seven years-old, I insisted that a clinical psychologist at one of our local children’s hospitals administer a neuropsychological work-up.  The doctor told me repeatedly that she was too young, but I had a feeling that something was wrong.  And, I was right.  Her learning disorder was diagnosed very early because of this neuropsych, and I was able to influence her school to give her an IEP.  The better part about having the data from this particular testing is that it provided another point of comparison for the latest round of testing.  We now had three points of comparison to chart, and that is how we could really see how far Grace had declined.  Having this information is vital for her care, future planning for her treatment plan, future planning for her education and IEP, and strategic planning for how we maintain and direct our own household.

The thing to know about early-onset schizophrenia spectrum disorders is that most of the published longitudinal studies have been performed in adult populations.  What is being discovered is that the results from adult studies cannot be applied to children.  The adult brain is matured, therefore, it responds differently to drug therapy and even the onset of disease differently than a child’s brain.  Neurodegeneration looks different and progresses differently in the adult brain than it does in the child’s brain.  So, childhood-onset schizophrenia spectrum disorders and even childhood-onset mood disorders cannot be treated the same as they would be in an adult.  Children manifest these diseases differently.

If you are a parent, then this will not be hard for you to grasp.  Think about those viruses that run through your home.  The virus shows up differently in your child than it does in you.  When Milly was four months-old, she caught Hand, Foot, and Mouth Disease.  She had little blisters on her feet and bright red palms.  She looked uncomfortable.  I caught the illness from her, but it affected me very differently.  I had very painful blisters all over my hands and feet, and something like twenty to forty sores lining my cheeks and throat. It was agony.  I couldn’t eat.  I couldn’t speak.  All I could do was drink water and drool.  I called my doctor, and she wanted to prescribe Vicodin for the pain.  But, I was breastfeeding.  I just had to ride it out.  I lost ten pounds.  The illness didn’t fully abate for fourteen days! This is an example of how something can look different in a child vs. an adult.  It’s the same with “diseases” of the brain like mood disorders and psychotic and affective disorders which are really neurodevelopmental and/or neurodegenerative disorders.  So, when people tell you things like, “Oh, my Uncle Frank is bipolar.  He takes lithium, and he’s just fine.  Your kid should take lithium, too, and she’ll be fine like my uncle,” it’s an ignorant statement because you cannot treat a pediatric psychiatric illness like you treat an adult’s.

The rate of neurocognitive decline in adults diagnosed with schizophrenia spectrum disorders is nothing like it is in children and adolescents:

The current study is the longest follow-up study to date of early-onset schizophrenia compared with both a healthy and a neuropsychiatric (ADHD) control group using an extended neurocognitive test battery. The main finding is a significant decline in verbal memory and learning and a neurocognitive arrest (ie, lack of improvement with age) in attention and processing speed, after 13 years in subjects with early-onset schizophrenia. The results imply that impaired neurocognition is present early in the illness process (nevrodevelopmental), but certain later maturational processes may also be dysfunctional. Elsewhere we have reported findings on the dichotic listening (DL) procedure showing the same trend.25 Normal DL performance characterized the schizophrenia group at baseline, while the group showed significantly impaired executive attentional control at follow-up. The findings support the hypothesis of neurocognitive decline during postillness neurodevelopment in early-onset schizophrenia.

These results stand in contrast to stability of neurocognitive functioning reported in the majority of longitudinal neurocognitive studies in adults with schizophrenia. However, the results support the findings from the recent follow-up study of adolescents with early-onset schizophrenia, which found deterioration in immediate verbal memory and attention over a 4-year period. (Schizophrenia Bulletin)

What does all this mean?

Go with your gut.  If your intuition is telling you that something isn’t right with your child, then listen.  Don’t settle for sub-par care.  After Grace had her allergic reaction to the Prevnar vaccination, the emergency room physician told me that I shouldn’t hesitate to give her the second dose of the vaccine.  The allergist who overheard her nearly had a heart attack, took me aside, and said with emphasis, “Under no circumstance should you give your daughter a second dose of that vaccine.”  Just because someone has “Dr.” before their name doesn’t mean that they’re good at their job.  After all, what do you call someone who graduated last in their class from medical school?

Doctor.

Be assertive.  It’s hard to assertive.  It’s hard to make those phone calls and insist that your child’s needs matter particularly if there is a very long waiting list, but you have to start somewhere.  Put your child on the list.  Keep asking questions.  Talk to other parents whose kids seem to be stable or improving.  What are they doing? Who are they seeing? What kind of treatment plan do they have in place? This is how we progress.  We build a community of like-minded people who are willing to share and help each other along.  We find clinicians who are willing to bend the rules to help our kids.  For example, Eadaoin desperately needs neuropsychological testing as well, but no one is willing to take that need seriously.  I have had door upon door slammed in my face.  Yesterday, as the neuropsychologist was sharing Grace’s results, I asked about Eadaoin.  I explained her symptoms.  I asked if it would be wise for her to get testing.  Grace’s neuropsychologist looked at me and said, “Normally, a child would have to be in our system here to be seen by me, but this is serious.  With your family history and her age, she very much needs testing.  I’ll do it myself.  I’ll put in a request.  Have your PCP fax the referral, and we’ll get it going.”  So, learn to take some risks for your child, and you’ll be astounded at what you can achieve.  Yes, you will be denied, but you’ll also move forward.

Educate yourself.  Learn the lingo.  Familiarize yourself with the research so that you can enter into the conversations with good questions.  This is how you participate in your child’s care.  It’s also how you empower yourself.  You will feel a whole lot less like your life is happening to you when you can participate in your own circumstances more fully.  This is how you equip yourself.  Unfortunately, no one is going to do that for you unless you enroll in a group that you either pay for or insurance pays for.  Either way, you have to find your mettle.  You have to enter into your circumstances and be your own catalyst for change, or you’ll end up feeling steamrolled by your own life.  No one wants that.

With that in mind, here is a fantastic article to get you started.  This is what Grace’s neuropsychologist meant when she said “classic presentation”.  If you are taking care of someone with an early-onset schizophrenia spectrum disorder, then this is for you:

Neurocognitive Decline in Early-Onset Schizophrenia Compared With ADHD and Normal Controls: Evidence From a 13-Year Follow-up Study

Sniff

I returned to the specialty hospital today to hear the results of Grace’s neuropsychological testing.  I went alone.  There was a huge back-up in the parking garage so I was late.

I sat down with the neuropsychologist in her office.  She sat across from me.  She inhaled and looked at me, paperwork in hand.

“Do you remember what you said to me when we had our first meeting? You told me what Grace’s psychiatrist told you when she diagnosed Grace with schizophrenia.  She told you what she had, and she told you that the prognosis wasn’t good.  Well, I’m going to take my cue from Grace’s psychiatrist.  I’m going to tell you what you already know.  You came in here afraid that Grace was declining.  I’m going to tell you that she is, and the prognosis isn’t good.”

I knew.  But, when someone tells you and they show you all the data points, well, it’s stunning.  I felt a lump form in my throat when I heard the phrase “cognitively impaired” and “broad impairments” and “classic presentation” and “neurodegeneration”.  I knew what the results would be before the testing, but knowing and having the hard data feel different.

I had hoped that she might have leveled off.  I had hoped that her IQ would not have dropped.

I hate this disease.  I hate it.

I just hate it.

Schizoaffective Disorder vs. Schizophrenia

I’ve gotten a lot of hits on this blog searching for the difference between schizoaffective disorder and schizophrenia.  It’s an important question for not a few reasons.  It’s an even more important reason if you’re the caregiver.  Grace’s exact diagnosis is schizoaffective disorder-bipolar type.  When she’s stable, that means that the mood component of her diagnosis is relatively under control.  She does, however, hallucinate almost daily, and we do deal with a certain level of paranoia almost every day.  Grace experiences sundowning which means that as the evening comes her symptoms worsen.  Last night, for example, at 6:45 PM, her speech was disorganized; she was fearful to sleep in her room.  She was stumbling around the house and mumbling to herself about something I couldn’t understand.  I saw her swatting at the air.  For Grace, this is actually pretty decent symptom management.  We wouldn’t have any sleepovers when she’s like this, but this is the reality of managing psychosis in a young person who experienced the onset of this disease at 10 years-old.  Overall, I am looking for insight.  Does Grace know that what she sees isn’t real? Yes.  Does Grace know that her fear is a product of her brain misfiring? That’s a bit harder actually.  Lately, she’s been waking up around 4 AM and lying in bed paralyzed with fear until morning.  She’s too terrified to get out of bed and ask for help.  There is a lack of insight into her fear.  We are working on this.

What I’ve described is the “shizo-” part of schizoaffective disorder.  In Grace’s case, however, she truly has almost all the symptoms of schizophrenia including the cognitive symptoms.  The “-affective” part of schizoaffective disorder refers to either mania, depression or a mixed state.  In Grace’s case, she has experienced all three while experiencing psychosis.  I would say that it was frightening, but it was also just plain weird.  She presented as an adult in her bipolar symptomatology with four weeks of severe depression, one transition week characterized by intense migraine-like headaches, and two weeks of mania.  This was a predictable cycle.  Attached to this was psychosis complete with positive, negative, and cognitive symptoms.  During her mixed states, we battled suicidal ideation.

Some clinicians believe that schizoaffective disorder is really just a form of schizophrenia.  Some don’t know what to make of it.  Some clinicians believe it to be on the bipolar spectrum.  Here’s what I know from the literature.  If a person had psychotic symptoms prior to the emergence of affective symptoms, then you are most likely looking at a schizophreniform diagnosis.  Grace has hallucinated for most of her life.  The affective symptoms didn’t show up until she was ten years-old.  This places her on the schizophrenia spectrum rather than the bipolar spectrum.  What does it matter since she would be clinically treated the same? It matters because schizophreniform diseases tend to progress, and a child must be cared for very specifically if they fall on the schizophrenia spectrum.  Bipolar disorder tends not to progress.  In schizophrenia, the brain atrophies.  The brain, on average, loses 5% of its mass, and there is an aggressive form of schizophrenia wherein patients can lose up to 20%.  Most people will lose that 5% in the first five years after the prodromal phase of the disease.  The interesting part of dealing with something like schizoaffective disorder in children is that there is no way of knowing which way a child will go until they reach about 18.

Grace is being closely watched for the development of pure schizophrenia as well as for how her current symptoms progress.  There are a few things that often determine prognosis.  If you have a family history of schizophrenia (Grace’s great-grandfather), maternal prenatal complications (check), and an early age of onset, then oftentimes the prognostication isn’t promising.  So far, Grace is doing as well as I could ever imagine in terms of her own personal level of hope for her future, but her brain is being ravaged.  She is not the same girl she was three years ago.  Not by a long shot.  Her biggest accomplishment this month is that she learned to unload the dishwasher.  This might sound odd that a 13 year-old girl just learned to do this task, but Grace’s executive function skills are so impaired now that unloading the dishwasher was, for her, like reaching the top of Mt. Everest.  She was very proud.

For one of the best discussions on the differences between schizoaffective disorder and schizophrenia, please read the following article complete with slide deck.  You’ll see just how nuanced the issue really is and what a pain in the ass these nuances are for the cream of the crop in the mental health field.

Resources:

Understanding the Diagnostic Challenges of Schizophrenia Versus Schizoaffective Disorder (Slides With Transcript)

The Daily Limp

I’m not entirely sure why I write this blog.  I think I write these posts because I need a place to put “all the stuff”.  I also write these posts because I’m hopeful that it might be useful to someone else.  Maybe our daily limp with a childhood-onset schizophrenia spectrum disorder, what it looks like, trying to treat it, how it affects our family, and all the rest of it will make a difference in another person’s life.  One hopes…

Well, we saw Dr. Klerpachik on Friday, and I must say that I genuinely like him.  How can one not genuinely like a man who openly speaks of needing to watch his carb intake while glancing down at his belly? He is a truly collaborative psychiatrist, and that’s rare.  So, how is Grace doing? Poorly.

The bump in Abilify has not helped.  The bump in Lamictal has not helped either.  Her mood is still mercurial, and she is still hallucinating.  Then, I mentioned Grace’s bouts with mixed states.  “Oh, tell me about that.”  I went on to describe Grace in a mixed state.  “Well, she’s paranoid, manic, and deeply depressed all at the same time.  Frankly, it’s awful.” He grimaced.  “What do you do when she’s like that?” I sighed, “I try to get the family out of the house, and then it’s kind of like herding cats.  For a few moments she’s really elevated and wandering around the house.  In an instant, she switches.  Then she’s openly weeping and stomping.  She becomes very belligerent.  She usually tries to lock herself in a room and refuses to come out.  Then she’s paranoid, thinking someone is watching her.  The cycle lasts anywhere from three to twelve hours.  If I can get her to fall asleep, her brain will usually reset.” He got up and paced for a bit.  “Have you tried Benadryl?” I laughed, “I’m way ahead of you.  She has a paradoxical reaction to it.”  He put his hands on his hips, “Hmph.  That can happen.”  I went on to say, “You might not like this, but I give her Dramamine to try to induce sleep because of its soporific effects.”  He looked thoughtful.  “That’s not a bad idea actually.  Does it work?”  I nodded, “Sometimes.”

In the end, he gave me a PRN (pro re nata) prescription for Seroquel to be tried during psychosis (the mixed state).  It is in the same class of drugs as Abilify, but it is known to be sedating.  He’s hopeful that it might cause Grace’s brain to calm down and let her sleep, thus, resetting during these psychotic times.  We shall see…

We moved on to speaking about Grace’s social skills regression.  I am deeply troubled by her behaviors, and it pains me to see her losing her ability to know what is and is not socially appropriate.  Dr. Klerpachik explained that this sort of regression is common with schizophrenia spectrum disorders because of the cognitive impairments that go along with it.  He began with, “Because of the cognitive impairments due to the neuroprogression of the schizophrenia spectrum disorders, kids can appear to behave as if they have autism.  Not that Grace is autistic, but there is something called…” I interrupted him, “Are you going to talk about ‘theory of mind’ (ToM)?” He said, “Why, yes!”  I got a little excited here because ToM is central to what I do for a living.  This is something I could wrap my brain around. “Are you trying to say that ToM difficulties are also common to people on the schizophrenia spectrum, and I should expect Grace to struggle with this now and in the future?” He replied, “Yep.  She’s actually going to need social skills classes much like the autistic kids do, but no one is going to put her in with the ASD kids because she’s not autistic.  It’s really too bad.  There’s not enough resources for these kids because there aren’t a lot of them out there.”  Well, I can do something for her.  This is what I do, and then we’ll see what develops.  At least I don’t feel  helpless, and that’s worth a lot.

Remember how I talked about taking care of yourself? Well, I’m trying to practice what I preach so I went to my book club meeting even though I hadn’t read the book.  Yes, I’ve become one of those people.  The woman who goes to book club but doesn’t read the book.  I don’t have time to read novels right now, but I’ll get there again.  I have to say that the women in this group are all lovely individuals.  Every time I show up they inquire after Grace almost in unison, and they listen to me drone on.  They even take their time explaining the novel’s plot just for me so that I can follow the discussion.  They don’t have to do that.  In fact, it might be annoying, but they do it anyway.  I appreciate it to no end, and it’s little supportive offerings like this that go a long way into making our ‘daily limp’ more enjoyable.

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Because Gracie loves the LOLCats