Tag Archives: therapeutic school

Residential programs, partnering and loud music

January 16th, 2018

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.

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What’s the elephant in the room?

September 11th, 2016

elephant2I remember being a child and planning what my life would be like. I was a natural caretaker and it was comforting for me to take care of people. From a early age I spent time with my grandparents and first they took care of me while later I took care of them.  It was a family dynamic built on love and kindness. As I grew up I supported my siblings in many ways – sometimes more than they liked. My brothers would challenge me. They were sometimes my best friends and sometimes my worst enemies.  I continued to see my cousins who lived next store and were neighbors. We had our own little gang in a small town outside of Worcester.  We were in many ways innocent but challenging too. Today it would be called bullying but for us it was protection, a voice and connection to make sure that we watched each other’s backs.

I remember the days when we would make sure that people on the bus wouldn’t tease any of us in our little group.   We actually made a bus driver upset once and cry as we stood up after one of us was called a jerk. Today, that would be suspension and if anything maybe even being kicked off the bus.  Back then our parents were called, we apologized, learned a lesson.  We taught the bus driver a lesson too — that none of us would allow for someone to be mean to one of our own.   We were  close in age and I remember staying back a grade and being taunted about it over and over again by this boy. My cousin, who was just 6 months older, gave out a punch to create a black eye and bloody lip to the kid who teased me on the playground. He was certainly talked to.  But yet again the other kids knew that we were a group and to be careful if you were not nice or fair to any one of us.

As I grew older and had children. the laws, language and the responses changed. My children, just like in my old neighborhood, had their “group”  and you couldn’t call it a gang as that is not socially appropriate. They would stick up for each other but the things that they did related to a challenge. It was hard.  One time my son was scared and took a letter opener from a teacher’s desk.  He was instantly suspended and no discussion. The principal had left him alone in the room and he was having hallucinations that someone was going to hurt him. He didn’t talk to anyone  but just took the opener.  Of course I explained to him  the meaning of “safe” and “unsafe” behavior.  (This was another set of terms I really do not remember being taught so strongly.  Back then, it was right or wrong with no in between).  For my son, I would have to advocate and discuss with the school why they should allow him to come to school again.

There were other incidents as I raised my children and I would look at my childhood memories and compare.  It was like us years ago being the bully and victim in the same day but now the school had a very different response.  Because my child that wasn’t falling on the developmental chart, he wasn’t labeled as being “Delayed”  instead I was told he was “healthy” except he  would struggle over and over again.  He would be teased with no one to stick up for him, he would do something back and get blamed.  It was an up and down battle as I would ask for the skills to be taught – one of mediation, and advocacy for a friend that would allow growth, responsibility and honesty.  But the difference was that I wanted there to be an opportunity of learning, generalizing and most of all being supported as he learned.

Teachers would be trained on how to recognize and deal with bullying year after year. But I often wondered, Did they also get education or professional development on mental health, trauma, or loss/grief in children?  It is hard to ask for help from a teacher that has no training.  Even after the tragedy in Newton, CT – that was going to be the conversation we had.  Here we are still with the same professional development days: Bullying, CPR, MCAS, and the Massachusetts framework and curriculum.   Where are the trainings on mental health, trauma, adoption/loss / grief, and mediation for children? I wanted to know.

I wish that a PTO would be open to teaching teachers about ALL children. Not just the soccer kids!

Teachers have an amazing and unique job to be with children 6 hours of the day, to teach them a variety of subjects.  But what about skills of learning what do in a difficult situation and how to deal with problems so that society accepts you as a child?  I believe that is the responsibility of the community, school and parent.

Let’s discuss the elephant in the room and get real results!

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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What I might have been

January 3rd, 2013

It’s a terrible thing to feel alone and misunderstood, to feel like you’re the only one in the world who suffers the way you do. It’s like you’re looking at everyone else from inside an airless glass box, waiting to either break free and join the rest of the normal, happy people out there or fade away and become a lifeless nothing. Growing up with mental illness, I know I felt this way. I’m going to hazard a guess that Adam Lanza did too.

I am not Adam Lanza, but that’s not to say that I couldn’t have been. I was shy, quiet and awkward, maybe even seemingly weird to those who didn’t know me. I also dealt with mounting mental health issues that had some doctors believing I’d need long term psychiatric care.  I wasn’t outwardly violent or explosive, choosing instead to harm only myself, and like every other teenager in existence, I gave my parents a hard time–maybe even a harder time than most parents experience. Why is it then that I turned out the way I did, more stable than I’d ever imagined possible and Adam Lanza is now dead by his own hand after going on a rampage? It all comes down to one thing: support.

I was not an easy teenager to deal with by any means. On top of puberty, I was experiencing auditory and visual hallucinations, severe anxiety, crippling depression and suicidal ideation. I was also a cutter, using that as a coping method to deal with the pain and frustration I had. My parents had to confiscate and hide every sharp object in the house so I couldn’t use them to self-harm.  I was out of control in the sense that my parents felt that they couldn’t protect me from myself, and they lived in fear, not for their own lives, but for mine. They had no choice but to admit me to psychiatric care when I became a danger to myself. It was the only way to keep me safe.

We all felt helpless. I was confused and felt so isolated, like no one could possibly understand the hell I was living in. My parents were just as alone as I felt, but in a different sense. They had essentially lost their daughter, and even more, had no one to talk or relate to. They didn’t want to be judged because their daughter was “crazy” but mostly, they wanted to protect me.

In the 9th grade, I stopped going to school. All the meds I was taking at the time made me gain about 80 lbs. and I felt too insecure about my image to want to go out in public. As my parents tried to force me to go, I became more unsettled and in the end, I threatened to kill myself for the hundredth time. I think that’s when my parents admitted that we all needed more support than just my outpatient therapist. They had already educated themselves on mental health, more specifically my diagnosis and medications, but they decided to look into local resources for parents who had teens with mental illness. As luck would have it, there was such a support group in our town, and my parents began attending regularly.

Through the parent support group, my parents learned about alternative high schools, a smaller school setting with clinicians for students with emotional, behavioral and mental health needs. With a lot of persuasion and maybe even a tad bit of bribery, I decided to give it a shot and to this day, I don’t regret it. Instead of having to deal with 1500-plus students, there were only about 70 of us in the school, and only 10 students per classroom. I received support from teachers and clinicians alike from the day I started there and it made my school days less overwhelming. After a while, I actually looked forward to going.

My parents also learned about a local youth group, supported by the Parent/Professional Advocacy League, for youth like me–and it changed everything. I finally found a place where I fit in, where no one judged me. It was a place where we could all get together and talk openly about our experiences. Everyone in the room got it because they had gone through the same thing. Just as I was making friends and coming out of my shell, my parents were too. They had finally found other parents and caretakers who understood. Things began looking up. My parents were learning new things about caring for a mentally ill youth every day, and I began letting people, myself included, help me. We became stronger together.

The three of us also became advocates together. My parents had learned so much from our experience, and wanted to be able to help other parents who were having a hard time finding information and support for their kids. I was becoming more and more stable and level headed every day, and felt the need to share my story in the hopes that other youth would know that they weren’t alone. The more I shared my story, and the more my parents fought for other parents, the better I felt. I was finally happy, doing great in therapy, and knew that I was going to be okay. I wasn’t wrong. I haven’t been hospitalized since I was 17 and I am now 25.

Those who know me and have heard my story know that I credit my parents for my success. If it weren’t for them bending over backwards to get me the support and treatment I needed, not only would I not be the person I am now, but I most likely wouldn’t have survived those trying years of desolation. However, the credit extends much farther than just my parents. I had, and still have, a vast support system that continues to push and inspire me.

Unfortunately, Adam Lanza and his family weren’t so lucky. It’s been said that Nancy Lanza, Adam’s mother, did not talk about her own or her son’s struggles. Can you blame her? People who have a mental health diagnosis or Asperger’s or autism are seen as lesser beings, often stigmatized for what’s beyond their control, and Nancy was probably afraid of being scrutinized for having a son who needed help. It also seems that she and Adam didn’t have access to the right kind of care, and even if they did have access to it, they definitely didn’t know about it.

What happened at that elementary school last December was a tragedy, and I cannot fathom what the victim’s families must be going through. My heart goes out to them all, but I want it known that my heart also goes out to Adam Lanza as well as his family. He was not a monster, and for anyone to sit there and say that is also calling me monster for having a mental illness. The only difference is that I received all the help in the world whereas he did not, and that is in no way his fault. Am I condoning what he did? Of course not, but this could have been avoided.

I believe whole heartedly that with the combined support from family and peers and effective treatment, youth (or anyone, really) dealing with mental health needs, Asperger’s or other disabilities can overcome their struggles and become a stable, happy human being. It’s time to come forward and talk openly about mental health because clearly it’s affecting more people than you could imagine. It’s only a matter of time before we forget what happened last month only to see it happen again in another small town to another young man or woman who was suffering in silence. It’s time to end the stigma so others will no longer be afraid to admit they need help. It’s time to stop saying we’re going to make a change and actually do something about it.

Chandra Watts is our guest blogger.  She is a young adult who draws on her own life to change how the world sees mental illness.  She is one of the founding members of Youth MOVE Massachusetts.

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Life, choices and accepting people as they are

November 26th, 2012

I remember when I was just me. Just an innocent girl who had no idea what was going on. Now I know better. Before I was happy, but now it is sometimes very hard to find a smile. My name is Bella and I have had a rough life so far. You may say after reading this that my life isn’t rough but the way I see it, it is. I am sixteen about to be seventeen, not even a month away from my birthday. Some worry about birthday gifts, but I worry about life. “What will life throw my way?” is now a constant thought in my head.

I am currently in a terrible school. I have been in many schools so I should know. Because of the school I am in now, it is hard for me to get motivated to go. I have had a CHINS placed on me by the school because of not going. We talked to the court and had notes from my therapist and the person who did my testing. They read the notes and understood that the school wasn’t helping me but I still had the CHINS put on me. This school is an alternative school. They call it a “therapeutic day school,” which I find is funny, since in my opinion they do not help. I know they try to help but they usually make it worse. All the staff there are nuts and they don’t catch much of anything. For example, I was getting beaten up by a kid one day in the small cafeteria. A staff walked in and asked what was going on. The kid said, “Nothing,” and then left. The staff believed him! I was shocked and honestly I felt hurt inside because these staff are supposed to protect you. And they can’t even handle that task. So that added to my school refusal. I don’t really trust anyone there except for a select few kids.

My home where I live is alright. I still live with my parents and my sister. I love them dearly but sometimes they can be a pain. My mom was in a car accident before I was born and has PTSD (post traumatic stress disorder) from it. My dad was laid off at the end of January this year. My sister has had a lot of bad stuff happen to her also.

My sister is one of the nicest people I know. She speaks her mind and is original. But most of the other kids want her to be just like them. Except she isn’t just like them. So naturally she’s been bullied. She wasn’t only bullied by the kids, she was also bullied by the teachers sometimes. There was this one guy who was a guidance counselor who would intimidate people. He intimidated my sister and my mom. If I met him I would have given him a piece of my mind because he claimed to have a child of his own with mental health/special needs. Honestly, I don’t care if the kid is purple, has tentacles, or has three heads, you don’t treat people like that. While I may not be big on religion, I still hope that people can learn how to treat others correctly. As in learn to help others and not harm them in any way.

I find all people are different. Some can be similar but never exactly the same. No matter what, we are all original. You just have to embrace it. If everyone embraced this concept, it would make the world a better place. If we accept people as they are, with their quirks and faults, and become more understanding and considerate it would be better for the world. And for humankind as a whole. This is what I believe.

As much as I feel alone, I also want to be known. I want to be who I am and remembered for who I was. I want my name to be remembered. I want to be my own person and remembered for it. And I want to be there for others just as my friends have been there for me.

I don’t want to give in to peer pressure. Sometimes that’s others making bad choices, trying to make it seem okay, and trying to get you to make the same choices, too. For example, underage drinking. I don’t see what’s so great about drinking at this age. And drugs, why is that so great? Does it magically fix all your problems? Does it pay your bills? I don’t think so. I think it is just going to cause you more problems in the long run. For example, if you get caught you are going to go to court and possibly jail. Was it really worth it? Smoking is a different story depending on if you are able to buy it on your own. But still it can cause some lifelong issues no matter what your age is.

I have not given into peer pressure for anything yet; my choices are still completely my own. I have not done drugs, drinking, or smoking. But I have still made some poor choices. Yet, I do not regret anything I have done. Just because I do not regret my choices doesn’t mean I am necessarily happy or proud of all of them.

No matter how many mistakes I might make, I don’t want to regret them. I won’t be able to change choices that were made in the past, so I don’t dwell on them. I want to continue down the path I have chosen until I reach the next fork, the next decision. As much as I might want to change choices, I cannot, so I just try to make better ones the next time.

Bella is a member of Youth MOVE Massachusetts. She lives in Central Massachusetts.

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A mission to make “normal” memories happen

May 15th, 2011

Today’s post is by our guest blogger, Meri Viano. **** As I look around and see all the parents in my community raising their kids, I often wonder what it is like to experience “normal” school activities. As I raise kids with emotional needs, I try to teach my kids that there is no such thing as “normal.” But let’s be real here:  there are many times during the school year that we bump into a situation where we have to decide what kinds of “typical” experiences we need to make happen and which ones to let go of.

I am not the type of person that usually gets caught up in this, but  sometimes the differences between what my children experience in a therapeutic school and what other children experience in public school has to be thought through.  The other day, my son and I had a conversation and of course it turned into a mission.  My kids attend “private” schools (as they call them) and  I am fortunate to have found two great schools with parent support.

Mission 1:  My oldest son asked the other day, “Mommy can I get a class ring?”  I immediately said sure, then thought quickly, “Let’s GOOGLE it,” since it’s not something provided by his school.  I was amazed to find a site dedicated to class rings and even more surprised that you can engrave the name of your own town on it.  My son deserves the same special opportunities as other kids but I’m the one who has to make sure it will happen. I know this is important to him and is one thing that he will remember.

Mission 2:  My younger son has been attending a “private” school for 2 years.   He came home his first year and told me he was having school pictures taken. I remember saying, “Really?  That is great!” The director of his school, an amazing woman, takes photos of all the students in the school. If you have money or not you get a picture! However, my other son reminded me recently,  “I haven’t had my class picture taken for 3 years”  True–and how did I miss that? With all the other stuff, it just happened. Mission number 2 has been accomplished because the school director made this happen.  While demands such as MCAS had crowded it out, knowing it was important to the students put it back on the “to do” list.

Mission 3: I love volunteering in the school. To go on field trips, to make a project, to do a fundraiser with the students in the school – I love it!! I remember when I joined the PTA in my town.  It was an amazing opportunity to have parent voice front and center. But in “private” schools you are lucky if you even come across parents. Either no one is allowed to volunteer because of privacy issues, or you are the only parent asking because so many children are in care and custody of the state. When my kids were in public school, I made gingerbread houses,  was there for teacher appreciation day, and also field day! While I hated being the parent whose child needed a one-on-one, I loved being there.

At therapeutic schools, it is a new “concept” to have parents involved. Families, parents, siblings, grandparents are not often not visible there or attend activities.  In public school, you are invited to many things, and they know that parent involvement is necessary to have “active” supports for their students. In “private” schools it is “different” to ask parents to be involved.   Both of my boy’s schools are trying very hard to include parents.

Family involvement is really not anything new for schools to accept. However, it is hard for some schools to understand that even with obstacles and challenges, we want involvement. We just need to be asked and told that we are wanted.

As I thought about the differences in public and “private” schools, other milestones came into my mind:  prom, high school graduation and then the bragging and boasting about where your child will be going to college.  My kids will grow and understand that it may be a bit different, but it will be unique, special and amazing. 

I am extremely lucky to have two kids that will teach me how to advocate for “normal” childhood memories. Hopefully, they will have many more of them and know that they are worth just as much as any kid that goes to public school.

The picture is of a school zone sign from the Ottawa County Museum in Kansas.  It was taken by Chris Murphy.

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