Tag Archives: psychosis

Alternative facts, fake truths and mental health: are you kidding me?

September 24th, 2018

When my son was 8 years old, his psychiatrist taught me to say, “My eyes don’t see that, honey.”   I said it when he confused his imagination and reality.  I said it when he wasn’t sure what was real.  I said it when he needed to know what was rock solid actuality and what was not.

His uncertainty about what was real had begun when he was in preschool.  Some days I would pick him up and he’d ask me to sing a song we had learned together in preschool class.  I’d say, “I wasn’t there, remember?”  He’d think for a minute, and sometimes he’d agree.  But not always.  It was cute but also a little worrisome in its frequency and his intensity about it.  It didn’t go away as he got older.  It simply changed into different forms.

He would insist that he personally knew characters in cartoons or on television.  He was quite sure he had lived events he’d only heard about.  Then came the day when the numbers on his math paper turned into piranhas swimming on the page.  It terrified him so much, he couldn’t touch the desk. He was eight.

He was a little boy with a big, scary mental health problem.  Sometimes the doctors said it was psychosis, sometimes they said it was mania.  Some even said he had a vivid imagination, but they stopped saying that after a few months.

He needed the people he trusted to say that, “No, there is no monster with one eye looking at us. That must be your eyes seeing things I don’t see.”  He needed people he loved to say, “That villain in the movie did not appear in the living room.”  Instead, I said that the villain was not allowed to leave the movie screen. He needed certainty and unshakable facts.  Without them, his fear and anxiety paralyzed or incapacitated him.

I never knew when a fact had to be verified for him and verified in the exact same way.  But I got good at it, keeping it simple with no embellishments.  I got good at telling him that the truth was the truth just as moms everywhere do.  Except we weren’t talking about little white lies that a child might tell, we were talking about something far more important.  He needed my certainty to become his so he could trust his world that day.  We all got on the same page on this, his teachers, his therapist, his doctor and his family. Without that, his anxiety zoomed to the stratosphere.

Not long ago, I saw someone I know on a national television show.  She has a brother with schizophrenia and yet she talked about alternative facts as if they were a thing.  A real live, acceptable, incontrovertible thing.  I looked at the television screen dumbfounded.  Yet, it’s easy to let terms like “alternative facts” or “fake” or “fake news” slip by us with an eye roll or shake of the head.  Or let them weasel their way into our vocabulary, like the person I saw on television.

Parents of children with emotional and mental health issues live with uncertainty and ambiguity every day.  We don’t know when our child opens his eyes in the morning how the day will go.  We don’t know if this service will actually work or that treatment will make a real difference.  We chafe against this kind of uncertainty but we learn to accept it (mostly) as part of our everyday life.

But we need all the knowledge, statistics and facts we can get. We hang on to them as we build our new normal.  We learn to discern true expertise and, when we find it, we are thrilled by it.  We might not always agree with it, but we respect it and are glad it’s there.  We don’t heap scorn or contempt on it as if it’s ‘only’ someone’s opinion, say about climate change or the value of a work of art.  We know that expertise is a close cousin to facts, yet not quite the same since it has the expert’s perspective woven into it.  That’s okay since we have our point of view too.

I’ve always been a huge believer in telling the truth even when it’s hard, inconvenient or unpopular. After my son began having problems I realized his mental health and his ability to trust depended mightily on it.  I also came to understand that my expertise was built on a combination of hard won knowledge and experience. There is a lot of value in both my expertise and the experts we rely on to provide care.

Truth is not negotiable for me or my son.  It shouldn’t be negotiable for any of us.  There isn’t any alternative.

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My grandfather, my son and the right thing

February 19th, 2018

I was 9 years old when I noticed that my grandfather dropped my grandmother off for church services every Sunday but never went inside.  Oh, he went to church for weddings, funerals, fairs and Saturday bean suppers.  But he never once attended Sunday services.  My grandmother would say he didn’t like sitting in the pew or that she simply needed a ride.  I asked my mother about it, feeling a little anxious, trying to make it fit into my limited understanding.  “Your grandpa doesn’t believe in God,” she explained, “But he believes in Good.”

I sucked in my breath and my little-girl understanding shifted.  Until then, I had Good, God, having morals, doing good deeds and being a good person firmly super-glued together in my head.  You couldn’t have one without the other, right?  I began to understand the different shape of each thing and how they were not identical.

I saw in my grandfather, whom I adored, a warm, generous, very kind man who adhered to a strong code of conduct.  If you left a dime at his house, he returned it to you at the next visit. But he was agnostic, not religious. I noticed others who did the “right thing” every time, even when it was uncomfortable or a stretch for them, but they had beliefs about the world that startled me.  I gradually became comfortable with the idea that our inner guidance systems are unique and help us navigate the world in singular ways.

Many years later, this would help me understand and love my son during the hardest times.

My son was 7 when I realized that he saw and heard things that no one else did.  He was too old to label it magical thinking and his therapists and teachers were reluctant to call it psychosis.  What he saw and heard often scared him and that fear followed him all day, often even into the night, resulting in nightmares.  His fear, frustration and despair would overwhelm him and he would lash out or fly into a frenzy, hurtling objects and even hurting himself.  In those hours, he changed into someone else, shedding the things that gave him joy: his laughter, his creativity and his curiosity.

Sometimes the voices and visions told him to hurt his younger brother and I would hold him tight while he raged.  I would urge his smaller sibling to close himself in his bedroom, to be safe and out of sight. We did this again and again over the years, our family’s version of a safety drill.  His younger brother went from telling people that “I have a very, very good brother who does very, very bad things” to simply announcing that his brother was bad.  Very bad.  Once, when someone asked what his brother was like, he replied, “I have a bad brother and he is a very bad brother to me.” In his mind you couldn’t do such bad things and not be bad yourself.

It’s hard when you are in the midst of daily chaos to unstick the superglue that binds together your ideas about what children are like, especially your own children.  I thought children were naturally resilient, absorbing life around them, sometimes being silly.  That wasn’t my son’s life at all.  He was emotionally fragile, sometimes lost in his own world and unable to laugh. It was my job to untangle my assumptions and instead put in plain view the things I wanted others to see.   It was my job as a parent to paint that picture, showing the world outside my family that my child could be good and do bad things.  That my child had lots of moments where he was brilliant and vulnerable and caring.

He could be loving and smart, hold my hand, give great hugs and say funny things and still have moments and hours where he made me cry, made me angry and pretty scared for him.

There were no guidelines to understanding my son; I had to create my own.  I began to understand that while he did not always understand what was real, he could understand what was right. Even more, he cared about that. Often, after his rages and being lost in his phantasmic world, he would feel deep remorse.  (He was still unable to stop himself the next time though.)   His sense of what was right and wrong vied with the voices and destructive impulses.

When he was a little older, he announced he had made what he considered a better moral choice.  He began directing the raging and hurting only toward himself, sometimes viciously, sometimes persistently and away from his brother and me. His inner guidance system was trying to make peace between the storms in his mind and his sense of what was right.

We are all nuanced people with complicated beliefs.  It doesn’t get any better when you throw mental health issues into the mix.  On those parenting days when I came up for air, I would channel my mother.  I would talk about my son saying, “My son is not always sure what is real, but he loves knowing what is right.” Then I would add a story or two which showed the shape of our lives, hoping to unstick others’ ideas about good children and bad behaviors.

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The middle child against the hallucinations

December 18th, 2017

It was a cold day in the winter and I remember my older son screaming like there was a criminal in the house. I ran to see what was going on and it was the misplacement of a book that startled him. He was saying over and over he was sure that someone took it.  Or someone planned to take it, because he was thinking about the book at school and it was taken so that he could not use it.

This was actually a better day then most. In the past, he would lash out  physically when he did not have something, or he thought that the world was planting things to make it difficult as the voices told him during the day.  I would be the one who would remain calm but get attacked as he tried to find words to come to his lips from his brain. It would be so very hard to try to figure out the antecedent prior to the behavior (ABC Charts),  Have you, too, ever had to try to figure things out at midnight, when you finally have a moment to think about the events of the day?

I remember sitting night after night trying to figure out what could I, should I, plan to make it all easier in our house. With three children (and often another few that needed a place to be) planning was most important. It took lots of planning on what and how I would explain the transition of lots of things. We had a large white board, charts, rules and ideas for the emergencies.  We also had it simplified into this-is-the-way-life-is-going-to-be-today.  Many people would tell me that it was like a mini behavioral plan all around.  What many did not realize is that board was just as much for me as it was for them. My lord, some days I was lucky to remember the schedule and get things done.

There was one time that I remember the voices arriving when they were not wanted at all. It was my middle son’s eighth birthday and we were planning for his cousins to come over and spend time with us all. We were going to make pizza and have ice cream sundaes after. That was the afternoon that the voices came, only to create hell in the house for my older son who was ten at the time. He would not listen, settle down. He could not tell me what was going on and I was having a challenge figuring it out.

We knew something was up and we had planned for the “safety” word as we did most days. This is the word that you say so that the other children get to a safe place. Our safety words were always words describing the beach. This time it was “ocean” and it was clear that the place to go was the living room, bring the dogs and use the electronics.  We had discussed it prior to the party and also practiced once. We were all on eggshells as the party went on. Did we need to use the word? What had happened? I hoped that the voices were gone.  You never know when you are with a child who experiences this and can’t really plan well. So we continued to go through the evening. It was peaceful but we were walking on eggshells awaiting the drop.

Finally morning came, along with play dough, music and fun.  We were set for the day and ready. Unplanned, not practiced and surely not wanted, the voices arrived. Off went the items and I was in the line of fire. I remember the first punch to the face and the kicking on the floor. As the safety word was used everyone did great but my middle son. He wanted to reason with his brother. He got everyone to the living room but, like many of our children who have brothers and sisters with hallucinations, he wanted to protect both his sibling and his parent.

I ended up sitting on the floor finally with safety hold on my son. My middle son sat back to back with me rubbing my head and saying nothing. I held my oldest until it was done and told him that he was safe, he was loved and I was there.  After several minutes– that felt like hours –he calmed down. He was finally able to cry and breathe. My head hurt and my legs wanted to crumble but I just sat there and started to cry. To this day I remember what my eight year old said: “Mommy he didn’t mean it.” He was completely right. And I did not mean for him to have all the pain as a sibling to brother living with trauma and hallucinations.

Sometimes you learn to accept and live with the voices as part of your family and other times you wish they would never come back.  It is hard because the hallucinations are with my son all the time and we love him. So in those situations we will learn to deal with those darn voices.

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.

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