Tag Archives: residential care

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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3 questions for the ‘program kid’

September 10th, 2017

Why don’t you like doing the things you once loved? Why do you shut down over seemingly basic things? Why does the GPS say 30 minutes but it takes you 45? These are questions I sometimes hear people ask me. The answers lay deep rooted in the long history of my life.

My name is Tom and I am a “program kid”. Over the past 11 years of my life I have been in over 20 residential settings, and over 15 schools. Some of them were good, some of them I can’t even begin to explain the trauma that has come from them. I won’t get into details, names, or locations. Though I hope to answer 3 questions I am often asked.

Question 1: “Why don’t you like doing the things you once loved?” When you arrive at a placement, they will try and get to know you and the things you enjoy. The first few times that was an easy question to answer. By the 7th or 8th program I didn’t want them to know me, and I didn’t want to know them. I’d had enough times doing the things I enjoyed and either being punished for it or judged. Unfortunately this only made me feel worse. I do enjoy the same things I once loved, but for much different reasons. I still love going fishing, for example. Not because I can be with my dad, but because I can be alone, in a quiet and peaceful environment. I still like wind in my hair because the white noise created by it rushing past my ears distracts me from the countless triggers around me.

Question 2:  “Why do you shut down over seemingly basic things?” You see, hear, and experience many things in program life. Most of it can be scary for a 7+ year old. So, when I hear glass breaking in the distance, “suddenly” my face goes ghost white and I can’t answer any questions. And when I hear someone scream or yelp in pain yet I’m the one in shock.

The best way to explain these happenings is with what I call a “time machine day dream” or better known as a “flashback.” It is as if I am picked up right out of my seat and placed in a program where glass shattered all over you and blood is everywhere. Screaming at night when a strange man walks in your room, but to no avail. I am barely able to write this, let alone experience it daily. This is why these seemingly basic things set me off.

Last, Question 3: “Why does the GPS say 30 minutes but it takes you 45”? The roads you take, I have been down. I will not, and cannot drive past that broken home one more time. The railroad tracks that are a simple non-occurance for you, remind me of a time I wish would be wiped from my memory. That pond over there? I almost drowned in it. This, and my photographic memory, consequentially make me extremely good with directions. I may be late, but I show up in a good space and ready to achieve the purpose of my visit.

I hope that these questions, one day, I will not be asked, and if so, my answer will be a simple, I do, I don’t, and I took 28 minutes, not 30. Until that day slowly comes, I hope that this gives some insight into how I live, and why.

Thomas Stewart is a member of Youth MOVE Massachusetts who enjoys creative arts and helping others.

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Are you the Social Worker? No, I am the mom.

November 15th, 2015

file000527564214I walked into my son’s new residential and sat down to have the “intake” meeting.  A lot was happening.  It’s a new program in a new location and new staff too.  It’s also a program designed for young people moving to adulthood. Alex is 3 months past his 18th birthday and I thought things might be different since he is an adult now.

Everyone had welcoming smiles in a warm room that appeared to be an office-like area.  Many of them asked for things all at once. My son- the new adult- didn’t answer but instead looked at me as they asked. Intake filled out- check! Medication- check! Prescriptions, clothing, PRN notes, bank account- check, check, check.

Then it began to get more detailed.  They start talking: He needs a primary care doctor, a psychiatrist, his own bank account in a bank nearby.  Oh, and he needs to learn public transportation.  To me, it felt like a whirlwind of information and demands all within 5 minutes.  I looked at my son’s face and said, ”Excuse me can we update you on a few things?”

I started by saying, “I have the primary care, psychiatrist and bank account all set.”   Eyes widen and someone immediately says, “Wow, you are the most organized social worker we have ever met.”   I reply calmly, looking at my son in a reassuring way that says: I got this one. That means that I will teach the community on this one.  To the staff I say, “I am not a social worker. I am his mom.”

There is silence and people look around at each other.  The main program person says, “We have never had a parent come to the program. The majority of our young men belong to the Department of Children and Families- not Department of Mental Health.  Are you local? Are you involved? Is he your real son? “

Massachusetts has launched a new approach to residential services funded by both Department of Children and Families and Department of Mental Health called Caring Together.  That means a new way of delivering residential care that can support families by doing two things: Keep families connected, and embrace children with care that they need.  But there needs to be strong standards of how to be family friendly and training on how to accomplish it.

I understood that this was the beginning to our relationship. This residential program had to experience, understand and work with a parent who is involved, connected and has been her son’s case worker.  They needed to accept that this was a parent who knew the details in the files, the appointments, hospitalizations, had the coping skills, and had been involved in the services and education plans for the last 18 years.

We continued with the meeting and then I started with what I thought all parents, or even social workers, would suggest for any child or young adult entering residential.  I said these are the top things that I would want if I were moving into a new program:

 

  1. Tell my son and me how the passes need to be organized so we can continue to be a family.
  2. Tell us how to access public transportation or program transportation to help keep us together.
  3. Teach my child how to have minimal money on a bank card for emergencies
  4. Allow us move all items into the room together.
  5. Let us make the bed, sheets, comforter , pillows, pictures to help make the room look like “his room at home”
  6. Provide snacks/drinks for the first few days until he understands how basics like shopping, meal time are organized.
  7. Help him add numbers to his cellphone of people in the area to ask for support
  8. Direct him to the local library for community maps so that in his new community he knows how to explore it with staff or (when allowed) alone.
  9. Give him a card to open up when I leave to know that I am here and will continue to be. It’s just like if it was college — it takes getting used to and will be different.
  10. Most important make a plan to talk on the phone and in two –three days and visit again to hear and support that it will be okay.

As I walk to the door to leave, I am approached and a conversation begins.  The staff express enthusiasm and excitement and they love that I am part of their community. They also note that they wish that more kids would have parents involved.   I am surprised that it was a very quick shift.  I am the parent and family and they have no idea how to include me, and they are challenged to shift to embrace this and learn.

They need some help with that challenge and here are my top 5 suggestions:

  1. Have paperwork reflecting all agencies funding this project. Include DCF/DMH on all continuum paperwork. It makes a difference.
  2. Ask for community support but ask for FAMILY Support. Ask the young people who they consider to be their family.
  3. Break BREAD together. Offer water, a small bread or crackers during the first meeting to welcome families. Show them a chart with staff roles so they will know who is who!!  Some programs have a role called Advocate – tell families what that is when that’s what they’ve  been for their child.
  4. Invite families to be involved in community celebrations
  5. Read the paperwork on the young adult’s background to see if there is family involvement and embrace it! If there is not…support that young person of any age to set up their room. It is the youth’s choice but I have never seen a youth going to college that doesn’t want someone to help them move in.

For some programs, including families is a big shift.  This culture shift needs to be supported by training, mentoring and most of all standards of what to do for families. The standard of common sense is not specific enough.  There needs to be standards of good family practice, how to be family friendly, and family engagement.  Only then will families feel like the best standards of care are in place.

Parent of child in Caring Together Model (residential services)

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Residential: It will never be home

May 25th, 2015

boy listening to musicResidential was four years of my life. It was a place where I had to lay my head at night. It’s not a home and it’s not my home. It’s a place I had to be to get some help. They called it treatment. But I called it help. I was 12 years old when I walked in there and 17 years old when it ended. The hardest part for me was feeling like I lost my family.

It was not easy living in a place that had strict rules given to you by multiple staff. Some gave you the rules stronger and some safer than others. It was hard getting to know all the roommates, the clinicians, teachers, doctors, staff and new house mates. It was hard getting to know the other “clients.” That’s what they called us: the “clients.” I hated being called that.

They told me that I was going home to visit. I really hated that. Home is not a place you visit – it is your home. There were things that over time I figured how to teach them to change. You have to understand I was one of the only kids that had a parent that came to visit me again and again. Others had social workers, probation, or agency people. I was different. I had a parent.

You get the hang of it when you live there long enough. You learn which staff like you, what teachers believe in you and which ones drive you nuts. Everybody thinks that going to a residential is a bad thing. Personally, it was what helped me get help. I was able to deal with my emotions, deal with my trauma and deal with my parent. I learned how to connect. We both learned to be honest with each other. We both had to work hard, but we needed people that would work with us too.

I had a ton of hospitalizations before residential. I had run-ins with the police. Residential was much better than getting locked up. I needed residential. I was angry at first for sure. I was lonely, scared and felt alone. One important thing that I learned was how to talk about my experience with others such as clinicians and staff so that they could learn how to help other kids and families. I feel there were a few things that made it work for me. These are the top six.

1. My parent could visit anytime.
2. My psychiatrist listened to me about what I thought I needed.
3. I was given outside walks and time to move when I needed it.
4. My siblings were treated with support. They could come visit me anytime too.
5. There were no specific times for phone calls — when I needed to make one I got the chance.
6. I had the same clinician at the residential, at my home and with my siblings.

If you are a professional working with kids, remember that you are their support for a bit. But you are not their family.

If you are a parent, don’t give up on your kids. Keep trying and be sure to visit and call often.

If you are a kid that needs help, remember you can do it. Just take care of you and you will make it. I didn’t think I was going to make it but I did and so can you.

Our guest blogger is a young adult who experienced residential treatment and wanted to share that experience anonymously with others.

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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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