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The middle child against the hallucinations

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.

Breach of trust, breach of privacy

“I was walking down the aisle of the grocery store,” Greg said, “and in the next aisle I heard my son’s teacher telling someone the details of his abuse.”  I was driving Greg, a dad of three, to a local radio station where we were going to be on a talk show about children’s mental health.  We had only met over the phone and quickly told each other the brief version of our lives:  how many kids we had and what kind of mental health issues we grappled with.  The conversation quickly turned to our war stories, the stories of hardship and crisis, partly to prep for the interview.  That’s when Greg told me about overhearing the teacher.

Greg was a single father of two boys and a girl, all of whom had different diagnoses.  His second son, his middle child, had the most on his plate.  He’d had several psychiatric hospitalizations, rotated through several medications and bounced around among therapists.  Right now, Greg was trying to get his school system to see that the child they had enrolled a couple of years ago was a far different child with more serious needs.  He had debated with himself, then told the school the details of his son’s story, hoping it would create an “aha” moment.  I’m sure it did, but it also led to a privacy breach.

Greg and his wife had divorced when the children were small and they had gone to live with their mom and her new boyfriend.  He saw them irregularly.  Greg moved in and out of the state, had several jobs where he tried out a few things.  Some were successful, some weren’t.  Then one day he got a call saying there had been charges of physical and sexual abuse against his ex-wife’s boyfriend and could the children come live with him?  He immediately agreed, somehow thinking that his children would be the same as when they were preschoolers, just older versions of the children he had lived with every day.

They weren’t.  Each of them had been through a lot and expressed it differently.  His oldest son kept saying everything was fine but had nightmares at night.  His youngest, his daughter, was clingy and didn’t want to let him out of her sight.  His middle child had received the brunt of the abuse and alternated between hurting himself and exploding with pain and anger.  Greg, bless his heart, had to learn three different styles of parenting in very short order.

The day he heard the teacher telling someone the graphic details of his son’s abuse, the child was with him and heard it too.  The boy began sobbing and curling in on himself.  Greg told him to wait with the grocery cart and stalked over to the next aisle where he had a few choice words to say.  He felt a little better but he couldn’t unhear it and neither could his son.  Neither could the person who was told the story.

Parents tell me over and over again that they simply don’t trust school staff with their child’s mental health information or history.  They worry – without knowing Greg or his son – that something similar will happen and they fear it will hurt or infuriate them.  There are exceptions to this – parents report that they trust special education teachers and school nurses to a great degree.  Sometimes there are individual teachers who “get it” or have raised a challenging child of their own.  These are the people who translate the symptoms, like Greg’s son’s meltdowns, into working diagnoses and unmet needs.   But they seem to be a small group.

Things happen to children through no fault of their own, resulting in trauma and difficult behaviors.  Sometimes things happen within children, too, that are beyond their control, such as overwhelming moods or crushing anxiety or ping-ponging thoughts. Until they learn tools and strategies, behavior is often their only way to let others know how they are feeling and what their needs are.   In savvy schools, teachers, guidance counselors and aides can be “first identifiers” and spot the things that should concern us and raise the red flag.  In schools like the one Greg’s son attended, that seldom happens.

Parents worry a lot about privacy.  Information about us is collected by everyone, or so it seems, and your children’s information is gathered without their consent. (Often without a parent’s consent either.)  Some information doesn’t intrude into our lives very much so we shrug it off.  For instance, I really don’t care if my transponder tells EZPass how many times I’ve crossed a toll bridge or driven a certain highway. But other information is much more sensitive and can shape how people see us.  Personal mental health information still carries a powerful amount of stigma.

Some mental health advocates say that we should all tell our tales of mental health and mental illness openly. It is, they argue, the only way we will reduce stigma and raise awareness.  Every time I hear that, I think of Greg.  He thought by telling the school about his son’s trauma that he would create compassion.  He expected that the team working with his son would respect his privacy.  The day he heard the teacher talking in the next aisle and watched his son sobbing, he changed.  He learned to tell just enough but not everything.  He learned that sometimes the risk of sharing his story can be too great.  He learned that while our stories can create powerful change, emotional safety matters too.