All posts by Lisa Lambert

cigarette

Will it Turn from use to Abuse?

cigaretteFirst it becomes a habit, then it becomes an addiction, then sooner or later, it gets you 6 feet under the ground. At some point, we all thought it was cool when we were doing it with our friends and using it as a stress reliever. But we all know there are better coping skills to relieve grief, stress, and other emotions. The world we live in is losing young, intelligent minds just because they see someone doing drugs on the street, or in their homes, or even through the television and media. It’s so sad how many young lives are getting taken by these drugs- k2, heroin, crack, cocaine. It’s also sad that people make nicknames for these mind killers, these life takers, because that’s all they do- kill your brain cells, make you sick, and most important of all, they will always end up killing you.

So to all those young, smart, and strong people- before you pop another pill, shoot another needle, or roll another joint, think about how it’s affecting you, affecting your brain, and affecting all your loved ones around you. Each time you do one of these things, it kills you just a little bit more. The one substance I don’t get is weed (also known as marijuana). People say they use it as a coping skill because it relieves the stress, but just remember that just the smallest amount of weed still can have a bad effect on your body. You are better off going for a walk, listening to some music, and just going to the gym to burn off some of that stressful energy.

People say drugs are a mechanism to relieve stress or whatever. But if you get the support through friends, family, or professionals who know what they are doing, you can find ways and coping skills to ease away from drugs, pills, or alcohol.

This was written by a young adult who wishes to be anonymous but has been an active member of Youth MOVE  Massachusetts for a number of years.

Residential programs, partnering and loud music

When my son was 16, I drove him two and a half hours to his new residential program.  Amazingly, we both stayed calm, chatting about inconsequential things and turning the music up when things got emotional and we needed to stop talking.  This was a moment I had staved off since he was eight, the first time someone suggested he go into a residential.  I’d thought of it, scowled at the thought, rejected it, marshalled arguments against it and yet, here we were.

His arrival was anticlimactic.  The staff grabbed his things and he went off to browse DVDs and video games he wished he had at home.  I was reassured, signed things and was given a list of ways to reach the program.  On the two and a half hour ride home, I alternately gave myself a lecture, sobbed and turned the music up.  (Yes, it’s a family coping mechanism.)

The first night was really hard.  I woke up a lot, half listening for my insomniac child to wake up and wander in the night, feeling an emptiness in his room down the hall.  Our dog, Bonny, who usually slept on the foot of his bed, meandered around not sure where she should sleep. We got through that night and the next and the next. We adjusted to having space where he used to be, a space that would be filled only when he was home some weekends.

Over the next couple of years, I made that two and a half hour drive a lot.  Some weekends I would drive out Saturday morning, take my son on day-long outings, return him to the program and then come home at night.  The next trip I would make a round trip on Friday so he could come home, then another round trip on Sunday to return him.  I listened to a lot of loud music in the car.

Sometimes I say that if my family were a game show, we would be Let’s Make a Deal.  This time, my son and I had made one of our deals – if he went to the program, I would be there on most weekends. It was a long drive, but he was part of our family. I called a lot during the week, calls to him, to his program therapist and often to his teacher.  When staff wanted to treat his eating issues as a behavior, I called, explained, begged, threatened and called up the ladder to resolve it.  When there were conflicts with others or medication issues or he had a favorite item stolen, I jumped in and advocated for him. I took him for his haircuts, to buy clothes and all the things a mom does.  I held on to my rightful place as his parent with an iron grip and didn’t let go.

It turns out this was one of the best things I ever did.

Residential programs in this state and others are changing, or trying to, so that they shift to make space for parents as partners.  Lots of times this is still aspirational instead of reality, but with each little change there is no going back.  The national initiative, Building Bridges for Youth, tells residential providers that children have better outcomes when their parents visit, stay in touch and are involved both in the short and long term.  They also have the research to back it up.  Children go into residential programs as family members and when they are there, they remain part of their family too.  Families have incredible knowledge and resources to offer and parents have enormous expertise to draw on.  Yet, sometimes parents are welcomed, sometimes ignored, sometimes disrespected.  Often, all three attitudes can be found in a single program.

By the time my son entered a residential program, I was pretty exhausted.  I had been fighting, advocating, collaborating and juggling for a very long time.  We both had mixed feelings about it, but had limited options.  He had been turned down by six day schools and eight residential programs.  He needed someplace to receive therapy and finish high school.  I needed someplace where they had had teens like him before and I could trust that they knew what they were doing.  I already knew that clinical and program expertise didn’t always come with a parent friendly attitude, but I figured I could change that.  My exhaustion might have initially looked like acquiescence or passivity but it was soon apparent that advocacy had taught me a few things

It also helped that my son would ask staff if they had checked in with me when there was a change.  Even better, he often told them that he had to check in with me himself before he made a major decision.  The two of us didn’t always agree, but we talked things through and figured out how to get what was needed.  Sometimes, we made a deal.  I frequently told him that advocacy was the family business.  He would say, “I guess I’d better learn it, then.”

Like many parts of the mental health system, residential programs are usually designed to operate in a way that works for the program.  Routines and schedules are the same for everyone.  Same for meals and activities.  Parents can see the program as unwilling to be flexible and programs often see parents as unwilling to change.  When an engaged pushy parent like me comes along, programs have to decide if they want to cheer or groan.

Being very involved was one of the best things I ever did, lengthy drives and all.  At first I was involved because, well, that was how I parented a son with mental health needs that mushroomed over the years.  I was also involved because it was part of the deal I made with him and keeping promises was important to both of us.  I came to realize that my regularly showing up, calls, chats with staff and meetings with therapists set the groundwork for troubleshooting when we needed it.  It blurred the lines between us so we were more of a team.  It created respect and sometimes, admiration among us.  It probably led to better outcomes, too.  Cue the loud music.

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.

Eeyore

My Connection to Eeyore – Depression and Friendship

EeyoreI always felt a connection with Eeyore when I watched Winnie the Pooh as a child. He was my favorite character, and I’d always get very quiet when he would come into a scene. I would watch him intently, and would listen closely to the words he spoke.

I never gave much thought as to why he was my favorite character. Now that I am older, I feel the reason I loved him so much is that he was depressed and although at the time I couldn’t put it into words, I was also depressed.

He was always feeling down and seemed to have a negative view on the majority of things, even in the magnificence of living in the Hundred Acre Wood, surrounded by all of the people who loved him. He had friends who loved him dearly, and yet, he was still depressed.

I feel that the only difference between me and Eeyore, truly, was that he had friends while I did not. Sure, I had family, but I didn’t have any friends or at least didn’t have friends who could understand my feelings and love me anyway.

Eeyore is still a character I can relate to. I still feel trapped in this endless cycle of depression, even after all these years. The thing that is much better is I now have friends who I can share my experiences with, and they love me no matter how depressed I am. They listen and they empathize with me.

I guess what I am trying to say is, I still have depression, and I still have a negative view on certain things. However, I came to terms with the depression, and through that, met and befriended people who have similar experiences to my own. We share, cry, laugh, and make each other feel better. So, even though I’m still depressed, I am still here due to the love and acceptance I have found in others.

Rachel is a young adult who has aspired to be a writer her whole life, She lives at home with her mother, father, and 6 wonderful animals.

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.