Tag Archives: family involvement

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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Including parents should be part of effective trauma therapy

August 2nd, 2017

Some mornings as I drive to work, my mind wanders through my family memories.  I often wonder if my life is at all like other people’s lives.  I always think about my children first and then think of the many families and young people I have supported as they needed it. At times I think about all the kinds of therapy, services, supports and various medications that I have tried out. I think of the binders filled with IEPs, treatment plans, timelines and photos that I have taken to remember it all, and wonder if I remember all the facts. It can be hard with three children.  They are all unique and different but share one  thing – trauma.

Trauma is now looked at more and more with children (and adults) and there are lots of conversations about new supports, new research and new ideas. I have tried the Trauma-Focused Cognitive Behavioral Therapy approach, Eye Movement Desensitization and Reprocessingsensory dietAttachment Regulation and Competency and therapy after therapy. And you know how it works best? Including the family, especially the parent.

My child has received therapy in the residential setting and the community but when I have not been taught and included in the treatment, it really hasn’t worked most effectively.  Many therapists told me to focus on my trauma and they would focus on my child . The reality has always been that my trauma has already been worked on and the PTSD that I have incurred from going through the ongoing issues with my children has been just as hard.  The reality is that the one therapy where I was included resulted in both my son’s greatest gains and his ability to maintain his skills and improve in his journey.

Trauma has turned out to be so common that it is something more and more systems are identifying and seeking better outcomes. Is anyone noticing that when you include the parent, the treatment improves? Are we making sure the skills are taught to the parent so that the approach can be done during home time, day trips, holidays at home and more? Do people see the parent as an investment or a problem?  I would love to see more outcomes that look at how including parents helps the child. I absolutely know that improvement for the child is very much tied to the connection to the parent.

An underlying piece of the onion that no one sees and no one wants to understand continues to be the things many parents and caregivers do to make it feel safe for their child. It takes patience, understanding, empathy and sometimes just someone to show that they hear the parent and see them as the expert.  It has been the one area in my children’s life that has been a mystery to figure out.

As the brain develops things change, memories change, and behaviors to deal with it change too. My oldest son and I talk now about what memories we have and how we continue to feel lucky to be able to talk about it and how we are going to deal with it. Trauma comes up when you least expect it.

For us the biggest trigger is fire.  We remember a house fire that we were in. We are triggered by seeing the burnt house we drive by, a candle burning in a house, smell of smoke, a fire alarm and at times just people lighting a grill. It comes up and each of us deal with it differently. I approach it with a mindful approach, my middle son using the Attachment Regulation and Competency approach and my oldest using the Trauma-Focused Cognitive Behavioral Therapy approach. They are all correct and all okay- but without my understanding and embracing what works for them it would not work.

I appreciate being asked about trauma and talking to people about their approaches. It doesn’t go away. It is not the last peel of the onion for us– it is actually near the outside.

My last suggestions are the following:

  1. Include parents in your treatment model- teach them and include them
  2. Ask the parent what has worked and not worked
  3. If a parent asks for assistance to get outside support for trauma, help connect them
  4. Talk about positives that are possible so that parents know it gets better
  5. Remember that it doesn’t matter how large or small – if people use the word trauma LISTEN

Let’s change trauma to something we talk about and help.

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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Without advocacy we cannot change a damn thing

November 20th, 2016

lily-tomlin-quoteWithout advocacy we cannot change a thing.  Heaven knows there’s a lot that needs fixing, changing and bettering in our world today.  Sometimes the changes are small and just need a little push.  But many times, a small push won’t cut it.  Big changes require big advocacy and advocacy requires boldness and bravery.

When I first started advocating for my son, I believed that the school and mental health systems were built to provide services for kids like him and that those services would be delivered quickly and match his needs.  I paid – still do – a hefty sum each month for insurance (surely that would open doors?) and I knew I could make my case.  I figured I could rely on the goodwill of the people who were concerned about him.  I absolutely knew in my heart that these were the necessary ingredients for success.

I know you’ll be just as surprised as I was to find out that’s not how it works.

I lived in Southern California when my kids were young. When my son was seven he was in a regular second grade classroom.  He had already missed the second half of first grade because of phobias, depression and suicidal behavior.  He had had one pretty lengthy inpatient stay.  The school suggested that the school psychologist, Maryellen, evaluate him.

When Maryellen and I met, I felt nervous but sure that we would see eye to eye.  She ran through the test results and agreed with his diagnoses.  She added that he was very, very smart – his IQ was in the near genius range.  She looked me in the eye and said, “High IQs tend to run in families.  His father must be very smart.”  I felt sucker punched and barely heard her say that she felt his high IQ more than compensated for his mental health challenges and therefore he didn’t need any help.  Later I realized I had experienced disrespect as a tactic to change the meeting outcome.  On that day an advocate was born.

Moments like these change things.  You realize the world doesn’t work the way you thought, people don’t act the way you imagined and instead of a straight path from point A to point B, it’s more like a hiking trail over rocky stretches, across streams, in rain, sleet and snow.  It can scare even the most intrepid hiker, but here you are taking the first step.   You learn not just to advocate, but to become an advocate.

It’s unlikely that you’ll get what your child and family need in the mental health world without advocacy.  People don’t rush to suggest services and insurance companies don’t agree matter-of-factly that you should get that treatment you identified.  You find out you have to make it happen.  You may become an advocate eagerly or reluctantly, by immersing yourself in knowledge or fighting every step of the way, but you change yourself.  You change your expectations, you change your definition of success and most of all, you change who you are.  As one mother said to me, “You become the parent your child needs, not the one you thought you’d be.”

Advocacy can be uncomfortable.  For those of us who didn’t raise our hands for the teacher to call on (because then everyone would look at you) or make waves or dig in their heels as a matter of course, it doesn’t feel natural at first.  Advocacy is something done publicly.  It is played out in a setting that is very different from many other things we do.  You do it in front of an audience, sometimes big, sometimes small.  While some nod their heads along with the points you make, others assume a “show me” stance.   When you get them to nod their heads too, even a little, you feel pretty fine.

You learn that advocacy does not have to be adversarial.  It is sometimes, but many times it’s not.  Lots of times it’s about being articulate, passionate, persistent and even patient.  It’s also about being prepared and being stubborn.  It’s about looking for options and sometimes creating them.

Without advocacy, people assume we are okay with the status quo.  Without advocacy they don’t hear us or overlook our perspective.  Without advocacy, we cannot make a difference for our family and for other families.

For many families, figuring out how to go about advocating is like playing a Jeopardy game.  You know the answer you want and you try to figure out the right questions to get there.  Advocacy is a skill, or set of skills, just like playing Jeopardy.  If you hone those skills, you might get the jackpot instead of the smaller prizes.  But even if you are a terrific player, there are still heartbreaking consequences if you make a misstep.  You have to trust in your skills when you cannot trust in anything else.  Unlike Jeopardy, there are days when you do everything right and you simply don’t win.

Advocacy is also about picking yourself up and going to the next meeting, the next discussion and bringing your A game one more time.

When I first began talking to other parents about my son and how we worked to get the services and treatment he needed, some would say, “I didn’t know you could say that” and a light bulb would go on.  Others would share their own stories.  Some would ask me to help.  When I did, I learned that if you help one family, you only help one family.  The barriers remain and the rocky stretches, treacherous streams and bad weather are there for the next person.

Individual advocacy for my family and other families was important, even crucial. But nothing changed for the families coming along after us – they were likely to hit the same snags and experience the same hazards.  Systems advocacy – working to change policies, laws or practice – changes things for many more families. The first time I sat at a policy table, I realized that here was the place to bring all those family stories, the skills I had learned and the hard won expertise.  Here too, you sometimes fight to have your perspective heard but when it is, it doesn’t echo anyone else in the room.  It’s why you are there.

My son watched me advocate over the years first for him, later for families like our own.  One day, he said, “I want to listen and watch.  I think I can advocate, too.”  Great, I told him.  And he has.  It’s a big undertaking to become a self advocate, with emotional fist pumping moments and moments of deep disappointment.  He understands that, too.  One day, when we were talking I told him, “Advocacy is our family business, you know.  Some families have stores or restaurants or trades where the children learn a lot about the business from an early age.  Just like you’ve learned about advocacy.”  He grinned and nodded.  “I’m okay with that,” he said.

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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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It’s just a phase and other lies they told me

July 13th, 2015

truth liesWhen my son was four, he had imaginary friends. They had to be seat-buckled in the car, be served their own buttered roll at dinner and tucked in at bed time. One of his imaginary friends was called Baby Monster. His imaginary friends didn’t go away in six months or a year and I worried. When I brought this up with my son’s pediatrician, he said, “Many children have imaginary friends – it will go away on its own.” But they remained and by age eight, Baby Monster had turned into a voice that told him to hurt his brother.

His anxiety grew and grew and midway through first grade, he became terrified to leave the house and go to school. He slowed things down so he missed the bus, he cried, he pleaded and eventually he would shake and curl up into a ball. “Lots of children have separation anxiety, his teacher explained. “He’ll grow out of it.” I tried one strategy after another but none worked. Everyone but me was sure that it was just a phase. Lots of children in kindergarten and first grade go through something like this, I was told.

Like most parents, I wanted to believe that these things were temporary. I took the advice of the pediatrician, the teacher and sometimes other mothers to heart. They said these things were in the ballpark of normalcy, so I shushed my inner intuition. I tried not to listen to my worries, but I still felt concerned and frustrated that my son wasn’t growing out of his “phases.” He was a young child and it seemed like time was on our side. “Wait and see,” I kept hearing. I waited, but things got no better and then they got worse.

Turns out the advice givers were wrong. It was not a phase, or a stage. He didn’t grow out of it. It didn’t go away on its own.

When you are told that your worries are unfounded, again and again, something changes. You become cautious about whom you confide in. When you are telling a story about your child or recounting an event, you watch the other person’s face and, at the first hint of disbelief, you stop or ratchet down. When you hear stock phrases such as “it’s just a phase” repeatedly, it finally stops reassuring you and makes you wonder why only your child is the one with a phase going on for months or even years. This caution can last for years and spill over to new therapists, new providers and others.  They sense a distance in you, a reserve.

As parents, we fear labeling our child or pathologizing them. There are a number of articles out there saying that we are “pathologizing childhood” and I flinch when I read some of them. John W. Whitehood in an article in the Huffington Post claims that what is simply childhood behavior such as distractibility, nonstop talking and showing emotions without restraint is now being diagnosed and treated, often medicated. He claims that these are behaviors that don’t need an intervention. On the other side is Thomas Insel, MD, the director of the National Institutes of Mental Health. He suggests in his blog that there is a “real increase in the number of children suffering with severe emotional problems, just as there is a real increase in the number of children with diabetes and food allergies.” While there may be children and teens who are getting more medication than they need, there are also others who never get the treatment they need, he adds.  But with diabetes and food allergies, parents don’t worry about labeling their child.  They know it’s not a phase.

These are two quite different points of view which can influence how we see our child. When we see things that worry us in our child, should we seek help, even treatment? Or chalk it up to childhood behavior?

We observe our children from the moment they are born. We notice both the big things and the little ones. We see the small changes, the ones that persist and the ones that come and go. We are like scientists in a laboratory, putting forward hypotheses (sometimes right, sometimes wrong), making careful (mental) notes and comparing the evidence we see against what we expected. We become experts on our child, knowing what things are worrisome and what are just his or her quirks. That expertise is valuable and often unacknowledged.  We shouldn’t let anything get in the way of using that expertise to help make decisions.

Science shows that treatment often produces better results if started early. Some studies show that earlier treatment such as effective therapy and the right school environment (with a zero tolerance for bullying) may lessen the need for medication. The key is to stop saying that it’s a phase and seek help. If my son had had medical symptoms, I would have been encouraged to be proactive and praised for noticing early signs of what turned out to be a bigger problem. My inner intuition and my parental expertise would have been bolstered. Like many other families, we had to get to a crisis point to get everyone on board.

Parents worry about their children; it’s part of the job.  Just as pain can tell us to seek medical attention, worry can propel us to get help too.  A parent’s worry can be an early warning sign that something needs immediate attention, not reassurance or false comfort.  Children are wonderful in their variety and complexity and their individual responses to life’s stressors can be all over the place.  But when a parent’s radar goes off, when that inner intuition tells you that this is serious, it needs to be respected and validated.

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