Tag Archives: siblings

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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Staying quiet

August 14th, 2016

children-209779_960_720The night my brother blackened both of my eyes in a violent, alcohol-induced rage,  I think you could hear a pin drop. I wonder if I’ll ever forget the sound of his fists on my cheek; my skin was so young, so soft, that I felt like they absorbed every inch of his knuckles. My mother watched. She sobbed, she yelled. She was his next target. When I called the police, they both tried to act like everything was fine. My mother, desperate to protect her teenage son, so lost in his addiction and mental health needs, begged them not to bring him to jail. “She shouldn’t have called you, I’m sorry guys,” my mother expressed, only minutes after her head was lifted from the hardwood floor. “I think she did the right thing,” said one officer. The other said, “What do you want us to do with your brother?” My mother shot me a look and I mumbled, “It’s fine.” I remember her straightening up, as if getting ready to protect him. “Are you sure sweetheart?” he asked again. “She’s sure!” my mother quickly interjected. I nodded. Avoided eye contact. Stayed quiet.

When I went to school the next morning, neither of my parents asked me if I felt up to it, if I was okay. All of my friends thought my boyfriend had hit me, and vowed that everything would be alright if I told them the truth. As I had gotten used to, I remained silent. What was I going to say, that my 6’2” brother beat me to a pulp, and that his eyes had glazed over and hardened, had never seemed to really see me? No one wanted to hear that. People knew how siblings fought, sometimes roughed each other up a little, all in good fun. Most of my friends thought I was an only child.

In the weeks following the incident, I would run up to my room and lock my door. I thought about running away, or moving in with a close friend. I got so far as to get her parents’ approval. I got straight A’s in school, had a lot of friends, did sports, and was a pretty good kid. Every ounce of my effort went into maintaining this picture. No one knew that my anxiety disorder would often get so bad, that panic attacks would disable me for minutes at a time. My severe depression crippled me, making me fall asleep on the floor crying. It made me turn to self harming to feel any sense of control at all. I spiraled in silence, and no one noticed.

When I expressed interest in relocating for my safety, my mother vehemently denied any possibility or need to do so. If my brother got through a day sober, it meant, to her, that things were looking up. I would be fine at home, and I was making things worse again, like the night I had called for help. I heard that that night  was my fault, time and time again. I was told this to my face, with my purple, hollow eyes looking back at her. I nodded. Avoided eye contact. Stayed quiet.

It’s all too common that the siblings of individuals with substance abuse or mental health needs go unnoticed. These crises upset an entire household, especially young, impressionable siblings. They may even get blamed for triggering an episode. These individuals grow up believing that their sibling’s violence and instability is their fault, and that they can do something to help. The trauma they witness will remain with them forever; many will never receive the recognition or support they deserve to help them heal too.

It’s important that the siblings of individuals with substance abuse and/or mental health concerns have their voices heard. They often hide in the shadows, trying not to make waves. I felt shrouded in shadows for so long, that when I moved out on my own after high school, the light nearly burned my skin. People asked about me and my experiences, and I started to tell them. I began paying attention to what I nodded to. My eye contact became strong, resilient, almost defiant against what I had borne witness to in years past. And I stopped being quiet. My voice has become loud and unwavering, and it’s a gift that I use whenever I am able.

Our guest blogger is a young adult who wishes to write anonymously

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Stigma: it’s in the little things

November 1st, 2015

sad womanStigma is about the little things.  The averted look, the space people suddenly give you when your child is behaving oddly or aggressively and the expression that says clearly, “Why don’t you control your child?” It’s those little things that wear you down. They appear so subtly, so fleetingly sometimes, that a strong reaction seems out of place. So we get a little more vigilant, become deliberately less sensitive to the people around us and learn to get through our day.  The little slights sting and sting again, like being punched on the same bruise over and over.

It’s only the big stigma stories that get attention, yet while they are important they happen less frequently.  The little things happen every day.

We all have our stigma stories.  They are like war stories that we tell one another as comrades in arms.  I remember a couple telling me a number of years ago about their 12 year old son.  He was being treated for depression and they put him in parochial school where the class size was smaller.  It worked for a while.  Then the mania, the fixation on death and blood, the impulsiveness and the risk taking rushed in and they began to understand that they were dealing with much more than depression.  He began drawing pictures of his teachers, his friends and family covered in blood or dying.  “We can’t have this,” his school said. “You’ll have to find a new school elsewhere.”  His parents asked me if he had been newly diagnosed with a medical condition, would the school have made the same decision?

We gasp and shake our heads when we hear these stories.  It’s stigma, it’s lack of education, we say.

But it’s the small hurts caused by stigma that are often harder to bear.  For me, it was the time the nurse in the pediatrician’s office read my son’s chart (with multiple medications, diagnoses and hospitalizations listed) and I watched the look in her eyes change.  The way she touched him to take his temperature and blood pressure went from confidence to wariness and when she left the room, she sent someone else in to finish the rest of the visit. It was the look in other parents’ eyes when my son was on a carousel and every time his horse rounded the bend to cruise past me, he yelled, Snot! Barf! and the words got worse and worse.  I stood helplessly there waiting for the ride to end while I endured the looks of pity and contempt.

In a study in 2010, researchers examined stigma focused on children’s mental health and found that there were three targets of stigma.  The first, as we all know, is the child or teen who has the mental health challenge. The second target is the family or caregiver.  Mothers, they noted, perceive more stigma than fathers and parents of children under 12 experienced more stigma by association than those with older children. Unsurprisingly, this increases what researchers call caregiver strain, or the stress of coping with both the child’s mental health issues, the impact on the family and the additional stress of dealing with the reaction of others.  The third target of stigma was mental health services themselves.  This was seen in a variety of ways from communities opposing group homes or clinics locating there to stigma toward mental health providers themselves.

The small, frequent experiences of stigma hurt in several ways.  There is the hurt you feel for your child.  It’s not just for what is on their plate each day – in fact there are days we admire our children and their creativity and strength.  It’s the looks they receive, the slights they experience and the subtle shunning.  Then there’s the more infrequent but still painful experiences that their siblings go through.  The teacher who also taught their brother who says, “Oh, you’re John’s brother.  I see.”  The receptionist at the dentist’s office who gives a fake smile and remarks, “Oh yes, your sister was in here last week.”

Finally, there’s our own hurt as parents.  It’s a smorgasbord of our own experiences and those of our children.  Whoever said stigma is going away hasn’t walked in our shoes.

Fighting stigma is important work.  It’s one part education, two parts advocacy.  There are a lot of misperceptions about children’s mental health needs out in the world.  Campaigns such as Bring Change 2 Mind encourage people to tell their stories, to initiate public awareness events and use social media to start conversations and well, change minds.  But until we see the small things, the looks, the pained smile and the slight drawing away lessen or even stop, we cannot say that we’ve vanquished stigma much at all.

 

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My sibling journey, my parent journey

June 21st, 2015

WelcomeHomeGrowing up with siblings was an important piece of my life. I remember knowing how to get my older brother in trouble, how to make sure that my grandmother would comfort me when I pretended the others were mean. I also remember those responsibilities as the middle child– help the little ones, get their shoes, help them get their lunch and make sure they get to school safe. Having siblings or being an only child, being oldest, youngest or in the middle influences us. Our childhood journey affects us as we grow.

I often think of this as a parent now. I see how my own children have their individual journeys as they grow up. Each one is different — the oldest, the middle and the baby. It feels a bit more complicated when you enter the world with some special needs in your life, maybe even more when you are the one that is right in the middle. I remember the dynamics for me as a child, as a teen and then as an adult with my relationships with my four siblings. You start seeing the “role” you played, you understand who they see you as and notice which ones you are close to. And you also notice the one that you are not close to. We call this the family journey in the world but we can also see it as the sibling journey or the parent journey. Or even the “identified young person’s” path.

It hit home for me when my oldest was hospitalized in a psychiatric hospital. My other son looked at me and said, “Mom, I hate the windows that they have on the doors, and I really hate the sound of those keys locking the door when we say goodbye.” He also would look at me when we went into the supermarket, or local pharmacy and would say, “Mom, remember the code word is Ocean- if my siblings are acting out and I want to take space I will use it in a sentence. Okay?”. Other people call these our coping strategies. For my family it was the survival and reality of our journey.

My sister and I did the same thing growing up. We had a code if she needed me to be by her side. She knew that she could call anytime and in my early college years, I would come home and pick her up. It was the “message” to get that break from your own sibling journey. I remember using something similar with my grandparents when I needed that one-on-one time. The give and take and the family relationships were as important and often just as crucial as food.

Barry López explains that, “Everything is held together with stories. That is all that is holding us together, stories and compassion.” In Crow and Weasel, he writes:

The stories people tell
have a way of taking care of them.
If stories come to you, care for them.
And learn to give them away
where they are needed.
Sometimes a person needs a story
more than food to stay alive.
That is why we put stories
in each other’s memory.
This is how people care for themselves.

Barry López, Crow and Weasel

He understands that listening to others’ stories is crucial for survival. Sometimes I tell my story to others, and sometimes they hear it just by knowing me and my children. As an adult, I have often needed certain things in my life as a parent: a parent network that understands the chapters of my life, the local pharmacist that gets the cue that we need to get out soon, the grocery store clerk who would open up an extra lane so we can pass through, or even the gas station that would allow me to use the bench for time out. As a child and sibling I loved to make sure that I could have time just getting away, being a leader at the bus stop to make sure we all got along, and knowing that on Friday mom would make that Italian homemade pizza.

All these things are part of my story and part of my journey. We all have our journey. To listen is the most important part and to understand feels really good.

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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