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Not one for boundaries

D. Sharon Pruitt21, flickr, creative commonsSitting in one of those fast food joints that reeks of cardiac arrest and the lost dreams of your perspiring servers, I looked down resentfully at the flashing light signifying another phone call from Chloe. This was the seventh time she had called in the past twenty minutes. I was just trying to finish my french fries. I knew what was on the other line and it wasn’t my friend. It was a screaming, sobbing, suicidal mess.

When Chloe first told me she was diagnosed with Borderline Personality Disorder (BPD), I didn’t understand the gravity of what that meant. That my being in her life would mean that my life would irrevocably change. By definition, BPD is described as a disorder in which its occupants have extremely turbulent emotions, impulsive and reckless behavior, and general instability in relationships. To me, it sounded like adolescence on steroids. I knew Chloe had been in a hospital. And something bad had happened at her old school that people liked to gossip about at school. Everyone has their quirks, I thought.

Chloe was not one for boundaries. If she needed you, she needed you. That could mean a three hour phone conversation to talk her down to running frantically out of a first date because your friend is having a panic attack. “That’s crazy!” people would tell me. And it was.

When Chloe and I would fight, or disagree as she liked to put it, all hell broke loose. Friends argue. It’s normal. It’s the fundament of intellect that people have opinions. And it’s in the fundament of human nature that we like to express ourselves. But when Chloe and I would “express ourselves”, it was war. And not the conventional kind. It was guerilla warfare. Subversive. Coercive. We were testing each other. She wanted to see if I would love her even after a fight. And I, well I was just being stubborn. Things would never end well. They would usually end in profuse apologies. Either she got too anxious and panicky thinking that I would leave her or because I didn’t want her to feel bad.

Chloe and I were a perfect match in a lot of ways. She was needy and I didn’t know how to say no. I could see myself being manipulated and becoming more deeply moored into Chloe’s illness. Her needs ate at my life and I let it happen almost compulsively. I needed her to need me almost as much as she needed me herself.

I remember the day Chloe said she was going to get some more help. The weight of her woes had been lifted some. I knew that other people recognized there was more of a problem than just “quirkiness”. I wanted Chloe to get help. I wanted her to be able to be my friend.

Dialectical Behavioral Therapy (DBT) changed her life. It gave her skills to cope and navigate through conflict. I didn’t feel like I always had to be Chloe’s cutman, cleaning up her bangs and bruises after each round in the fight of life.

Finally, I was able to be her friend again.

Written by a 17 year old who is writing anonymously.

The imminent demise of parent voice, sort of

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.