Tag Archives: family driven

The imminent demise of parent voice, sort of

January 4th, 2015

Talk to the handThe other day I opened my mouth and my mother came out. This happens to most of us as parents whether we expect it or not. There are phrases that you heard over and over again as a child and you find yourself repeating them. Maybe it’s a prediction (Someday, you’ll be glad you had to say “please”), maybe it’s encouragement (You can do anything you put your mind to) or maybe it’s just the way you say “I love you” to your child. What all of them have in common is that in your family, this was parent voice. It’s passed down from generation to generation.

Parent voice became a growing part of children’s mental health services through the persistence and persuasion of parent leaders. It grew from an individual voice to a collective voice asking for a role in our child’s treatment and a seat at the governance table. Progress was slow at times and while some providers and decision-makers embraced family involvement, others said to themselves, Aren’t parents part of the problem?

The amazing thing was that parent voice incorporated what families said was important, not what others thought should be in it. (Note: it’s often called “family voice” to include grandparents, foster parents and others raising children, but it still comes from the same set of experiences.) Parents said that each family is unique and their strengths should be the centerpiece of any care plan. Parents said that they didn’t want others raising their children, even if they were in out-of-home placements. Parents said to respect their culture, their decisions and their expertise. Models such as family-driven care were developed and parents became trainers, evaluators and colleagues.

In many ways, parent voice had its heyday in the early 2000s. There were still too few services and many remained deficit based. But parent voice was recognized in many places as unique and indispensable and more and more attention was paid to it.

Most parent leaders (like me) thought that there was room for parent voice alongside adult consumer voice, youth voice, provider voice and professional perspective. We often tolerated being the token parent representative and advocated for more parents in various roles. We partnered with others who had “lived experience” to promote its value. We advocated, we collaborated and we thought we had claimed solid ground.

Initially, we argued with adult consumers, often in their 40s and 50s, who had worked to retain control of their treatment decisions, take back their strength and gain respect. Some were uneasy with parents, especially when their own parents had made decisions about their care that they felt was harmful. But we talked and found common ground. We explained that children are not little adults and do better when their parents are their advocates, their supporters and often, their voice. Parents have their own unique experiences, too, which often galvanize them into seeking changes in the system that provides services for their children.

Then along came youth voice, which we also promoted. After all, in most families you want your teen or young adult to be a critical thinker, have skills to deal with complicated systems (including behavioral health) and craft a life that has meaning and makes them happy. That’s what parents do, right? My own son used to watch and listen as I talked to his insurer or argued with his school. “I want to be as good an advocate as you are,” he would say. The original metaphor for family driven care was a van, with the parent driving behind the wheel and various professionals, educators and other providers giving directions and expert advice. Eventually, as the child grew, he or she became the student driver, then the sole driver of the car. But the parent was still there, often riding shotgun.

So what has happened to parent voice? Well, sometimes the very things we work for and want to see happen create changes in unexpected ways.

In the introduction to Family Peer to Peer Support Programs in Children’s Mental Health: A Critical Issues Guide, three types of family support are identified. They include the family partner, often seen in wraparound; paraprofessionals, who augment the role of providers; and family peer support which provides support, information and advocacy. The Guide points out that family peer support – which strengthens parent voice – is at a critical crossroads. This remains true today.

In Massachusetts, as in many states, family partner roles have grown exponentially. They are well defined and often incorporated in mental health services. Clinicians are becoming more accustomed to working with family partners (which is excellent). These roles are well defined and family partners coach and assist parents in using their family voice to help determine their child’s care. But there it ends. Here, parent voice is about individual treatment, not advocacy or systems change. Family partners are essential but they are also becoming the way we do business. They are just one perspective among many in their organizations; a note in the melody, sometimes a minor chord. We worked hard to grow the numbers of family partners but their role is not robust enough to carry parent voice into systems advocacy.

Ten years ago, youth voice was a fragile and new sound. There were a handful of youth in the public arena and no one was sure if their experiences were unique or represented hundreds of others. Family voice included parent voice and youth voice and while they weren’t the same, we were all used to that. After all, our own families included both types of voices and we somehow made it work. Organizations like mine fostered youth voice and listened in delight and awe as it grew.

In some discussions about policy and practice, youth voice is now stronger than parent voice. It is still unexpected, often unedited and startling. But there is a subtext at times that when parent and youth voice don’t align, everyone must choose which to hear and honor. It reminds me of those early times with adult consumers when we saw parent and consumer voice having too little common ground. In our families we expect different voices and each is important. The same must be true in public conversations as well.

Parents have also recounted their unique experiences in raising youth transitioning to adulthood. Sheesh, I know this one well. It’s a kind of dance with your son or daughter where you step forward to embrace and support and cha-cha backwards to create space for independence. I recently heard the phrase, “parents as adult allies” where parents were tossed in with other adults in a young adult’s life as supporters and cheerleaders. This worries me. Parents are unique in their son’s or daughter’s life. Their relationship has many layers and textures and nuances that no one else can come close to. We all have a learning period – sometimes a long one – where we find out when to offer advice, when to listen, when to be emotional and when to use your poker face. Sometimes we are allies, sometimes we aren’t. But we are always something no one else can be—parents. Parent voice needs a recognized place during transition to adulthood.

Parent voice has changed. Sometimes it is institutionalized. Sometimes it is muted. Sometimes it is seen as relevant to individual care but not needed for program design, evaluation, policy work or systems reform. Wherever we find it, we should listen. Parents continue to experience the behavioral health system in ways no one else does. Each week I talk to a parent who wants their journey and their story to mean something; to make it a little better for the parents coming after them. When I open my mouth and my mother’s voice comes out, it says “You can be anything you want to be.” Parent voice can change the world too. We need to value it enough so it does.

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My Anger, No Longer My Danger

December 22nd, 2014

angrysadgirl4I have been angry for a long time, and I have let that anger overpower me without actually thinking about it. All I knew was that as awful as I felt, it still felt good to have something other than myself be in control, and I held on to it like a lifesaver while I tried to keep from drowning in the sea of heartache, loss and betrayal that became my life. Although I looked to the anger to save me, and even grew to kind of love it in a weird way, it didn’t come without a price.

With that anger came long and severe bouts of depression. Some days I was so desperate to stay home that I deluded myself into believing that I was physically ill, giving me the perfect excuse to cancel whatever plans I had for the day, or the entire week. I cried often, too; at home, in the car, in the grocery store, in my sleep. Everywhere. I knew I was angry and I knew I was in pain, but I didn’t know what I needed to do in order to make it stop, nor was I sure I wanted it to stop. I was comfortable in my misery. Of course, people were concerned and I got the attention I wanted and needed by outwardly expressing my anger. Other times, I was less dramatic, even secretive, and relied on my self-mutilation to communicate to those around me that I was in pain.

Very recently, a family friend took their life, and it was devastating and a real shock. I know what you’re thinking- this was my turn around. This was that life changing moment that made me realize that I didn’t want to be angry and depressed anymore, but that couldn’t be further from the truth. Their death, their choice to take their own life made me think that if it was so easy for them to just end it, then why couldn’t it be just as easy for me?

I started obsessing about the idea of suicide. I didn’t exactly have a well thought out plan, but I thought that if I could just do it, get it over with, everything would be better. So I spent hours on the internet researching everything I could about suicide- the history, famous people who’d done it, different methods. To be honest, I was completely frightened by the fact that I was actually considering suicide, but I was also being extremely willful. I felt like this might be the best option. It was either that or live in pain and perpetual confusion about how I was feeling for the rest of my life.

So I started a Pro and Con list to see whether the pros or the cons about suicide would outweigh the other. Some of the cons: I would never see my family again, never see my boyfriend, my rabbits or my friends. I’d miss the trees, the stars, the moon and Harry Potter. And the pros: no more depression, no more crying, no more hurting my loved ones, no more hurting myself, and best of all, I’d get to see my father. And that’s when it hit me. The reason I’d been so angry everyday for what seems like an eternity was because I was holding on to the day my father died, every day after that and all of the events that transpired due to his death. I was angry at him for leaving me, I was angry because it was, and still is, unfair that I’ll never be able to see him again and I was angry because life was hard without him. So I held on to that anger because it was like holding on to him, and if I let go of that anger, well then I was letting go of him, too. I thought that if I didn’t get upset while thinking about him, if I didn’t cry, then I didn’t care about him, and that somehow made me a horrible daughter.

After a lot of reflection and a lot of talking and exposure, I think I’m starting to see that I can live my life while missing my dad. I still have days that I can’t seem to shake this insurmountable grief that I have, but I’m finding that I am enjoying things that I haven’t been able to in a long time. I’ve ceased my research on suicide and instead replaced it with research on holistic living, something my father also cherished. I wouldn’t say that I’m happy now, that my anger is completely gone, but I’m getting there, and I can’t help but hope that my father would be proud.

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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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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Getting To “Culturally Comfortable”

January 16th, 2011

When programs strive to be culturally competent, the result should be that families are “culturally comfortable.” Most parents and youth can tell you whether it is easy and comfortable for them to be connected to and involved with a program. Feeling culturally comfortable helps families decide how they view a program, a worker or a service.

I first encountered the term “culturally comfortable” in the guide, Working with Families of Children in the Juvenile Justice and Corrections Systems. As Trina Osher and Barbara Huff note, some families may require a boost to become involved with their child’s services or program. They list some key strategies to provide that boost and providing culturally comfortable settings is a priority.

The term “culturally comfortable” has been cropping up in health and education settings for a number of years now. Many urban health centers have changed how they practice, finding new ways to share health information and deliver care. Some ask patients how they think a condition should be treated before offering their own recommendations. One pediatric practice in Virginia explored creating a “culturally comfortble” medical home. Some preschool educators have also been strong proponents of ensuring that their classrooms are culturally comfortable. Beverly Gulley and Nillofur Zobairi write that educators need to “know and understand the family’s cultural orientation to make a child feel comfortable and secure, and provide a sense of continuity.”

While cultural competence is a core value for both wraparound and creating a systems of care in children’s mental health, the notion of “culturally comfortable” settings or practice has yet to show up. I think it’s about time. Cultural competence is a rich, complex yet formal standard and most parents and youth would be hard pressed to say how close a setting or practice is to getting there. Yet they would be able to judge whether it was culturally comfortable. Feeling comfortable or uncomfortable is something we are all familiar with. Culturally comfortable settings, dialogues and practice make families feel welcome and respected.

Increasing cultural competence in the delivery of mental health services for children can help reduce disparities and increase access. But these results are frequently unknown to families, especially if the changes are gradual. Changing a setting, practice or dialogue so that it becomes more “culturally comfortable” is something that families can notice and determine for themselves. Determining whether that change is happening can empower parents and youth. Early in the family movement, parents often judged whether materials, programs or approaches were family friendly and later family dirven. So, too, can parents and youth figure out if materials or programs today are culturally comfortable.

Building an approach that is “culturally comfortable” starts with communication and awareness. Find out what the family values, who its members are, what the concerns and goals for its children may be. Ask families what matters to them. Find out what is private in a family and what is easily shared. Culture influences parenting and family behaviors, including meals, sleep, how to dress, interaction with both adults and other children, health care, how to show affection and respect, ways of celebrating and what occasions to celebrate. Many different family configurations are out there. Celebrate moms, dads, grandparents, extended family members, siblings, and others important to children. Model respect and show that customs, languages, cultures, and physical attributes different from your own are important and to be honored. Diversity in our society should be valued and enjoyed, not considered a threat to the values or lifestyle of any group.

Catherine Stakeman, Maine NASW, said that “becoming culturally comfortable between all cultures is a journey, and there is always room for improvement.” To make it happen, it must be everyone’s responsibility.

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Dear Santa

December 19th, 2010

Meri Viano is a guest blogger for Hold On, It’s Not Over and the mother of three children. This is her letter to Santa.

Dear Santa,

I have been exceptionally good this year. Well, at least I’ve tried really hard to be good. But there are all sorts of things that can get in the way.

I’ve been doing extra chores this year. It’s hard to pick up after children that hide things, especially cookie dough behind the cabinets, snacks in drawers, and even the papers that get ripped up into a million little pieces because it is an “activity” that keeps one of my kids busy. It can take a huge amount of planning to get the chores done and also manage to pick up and move pictures to the holes in the walls so that the visitors do not feel they have entered a “unsafe ” place.

I am not even talking about the singing that I have to do to get my daughter to eat, or the dancing I must do to get her to drink. It is difficult being the mom and the entertainer. Combining discipline and building positive self esteem is hard. NOT like the Italian home I grew up in.. you knew if the wooden spoon was raised you ran!

I have also tried to go grocery shopping at 11pm so that my children are sleeping all nestled in their beds and limit the number of customers who point at me and say “That”s the mom with the unruly child.” It also helps with the child who feels he needs to eat certain things to keep the voices in his head away.. if you drink lots of water you will not hear the scratching on the window that is not there.

I am trying to be nice to everyone but Santa, have you ever called Mobile Crisis? They want you to schedule a time for the crisis! When you call, they seem to always say it is shift change and they won’t have a clinician in for four hours. How do you pause a crisis? I call, at first to explain, then I’m more demanding but still patient, and then okay, I talk about the laws and then I’m called the parent OUT OF CONTROL.

Santa, I’ve spent a lot of time teaching too. Everywhere I go it seems I have teaching to do — grocery stores, banks, even people in cars looking as you are waiting for the stop light. Seems like everyone has to LOOK at our kids and judge us. So I am trying Santa.. but it gets hard. The new item in the state is Wraparound. What they don’t tell you is…well, can you imagine not believing in strength based families? Why is it such a hard concept? And you know my tough child–the one that hears voices–who doesn’t know what to do and sometimes wonders why he should continue to try? This Wraparound thing would never work for him because he is too unique–the system calls him too complicated.

Finally.. I really want to go back to DMH and get a caseworker that believes in families, believes in clinical help. They call back, they support, and guess what .. they do not want to file 51As. I am trying to believe that the professionals in Wraparound will get it.. but how many times do you need to change teams in order to succeed?

So I hope all this counts. My list this year is a list of the things I think would help me with the system. It’s a little like a top 10 countdown (I would love to be Jay Leno, or Letterman). Will people get my sense of humor? It is different then most… I guess not really if you have a child like mine.

The items on my list are in the order of importance, so if there are too many things for you to carry, please delete as few of the items as possible, starting from the bottom of my list.

Santa, I will leave you organic oatmeal cookies and soy milk (in case you are lactose intolerant) and carrots for your reindeer (organically grown of course).

Thank you in advance. I know you receive a lot of letters so you don’t need to reply unless there is a problem with my list or you need services for another child. I have taught myself to be resourceful so please let me know if I can help someone else get it right!

10. Mobile crisis to move in my home

9. Clinicians who will talk to all parts of the team

8. Schools that do not depend on the parent to play expert, and then blame them if it doesn’t work

7. A secretary

6. A full time nurse – those somatic symptoms creep up on us

5. News station to teach the public about children’s mental health

4. Safety protection.. not what you are thinking… i want bubble wrap so when the heat is hot.. i am protected!!!

3. Another set of eyes.. reality tv please. The money would pay for the lawyers.

2. I always wanted more children, so for this one could each kid in DCF or any other system get a someone to call mom, dad, grandma or grandpa?

1. Ok.. I have decided.. nothing can be cut off my list…I need it all to make things work

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