No Saints Here: A Cautionary Tale of Mental Illness, Health, and the Cost of Ignorance in the Long Star State

Aaron's book has a publisher and a new title! It is being published by Stoney Creek Publishing https://stoneycreekpublishing.com/ and is expected to go on sale March 2025! Right now I am making a final check before handing the manuscript over. Then it goes through a couple of rounds of editing. Aaron wanted to use his life and our experiences to make a difference and it feels good to get his voice out into the world. This title came from concerns of his friends and youngest brother that the story might fail to authentically capture Aaron’s lack of sainthood. He was no saint.

We all failed him. Our collective lack of sainthood is a major point of the book. It is an honest look at our mistakes and their consequences. Sometimes these were sins of omission, often because what we now know as essential elements of best practices in mental health had not been published and were not general knowledge, even across mental health professionals. Examples include an understanding of trauma, the importance of emotional regulation, and of firmly centering practice on building capacity both for social and emotional skills and opportunities to experience success.

The Adverse Childhood Experiences (ACES) study was the first to explore the relationship between abuse in childhood and adults risk (Felitti, et al., 1998). It was not published until 1998, eight years after Aaron was abused in Straight Inc, and long after he landed on the streets. Prior to the ACES study, child abuse was generally assumed to be rare and trauma informed or trauma sensitive were not terms applied to therapy much less the environments that children and youth experienced. Truthfully, he had experienced multiple ACEs; a teenage mom, a father with serious mental illness in prison, and a violent household with raging alcoholism. All of that before he entered school and it was all compounded by school failure in a system that not only failed to recognize trauma, it failed to see and effectively support his learning disabilities. It was decades before PBIS recognized the need to teach expected behaviors and effective self regulation and conflict resolution strategies. We were ignorant and he paid.

Then, worse than what we all failed to do, were the sins of commission. The practices that may have inflicted the most harm were the behavioral strategies perpetuated by professionals who saw only an endless list of undesirable behaviors to extinguish, while failing to recognize assets or give opportunities to broaden those seeds of strength. We all underestimated the basic need to experience competence, and none of us knew anything about the accommodations that might have made success possible in school. I bought into that deficit mindset and aligned with those who were failing my child. I was an inept disciplinarian, who when the prescribed consequences failed sometimes resorting to yelling, and even spanking. My discipline might have worked with a child who would have acquiesced to any sloppy attempt at parenting. That was not Aaron.

Then the match that lit the kindling our collective ineptitude stacked high was the horrific abuse he lived through at Straight. I would like to be able to say that we are all wiser now that we have access to evidence based practices, but the truth is that too many children and youth still face the same strategies. Each section begins with Aaron and my experiences but perhaps the most important pieces are the closing chapters which provide evidence for more effective strategies. Our experiences are meant to provide a backdrop to help the reader apply alternatives.

Mental Health from a Public Health Lens

It’s Children’s Mental Health Acceptance Week! It is meant to spur us beyond passive awareness and into action! That action needs to be guided by the principles that inform best practices to be effective.

I have been thinking about mental health models from a public health lens. Public health tries to provide support as early as possible to prevent illness, and when that is not possible, to help people live lives of meaning anyway. It is often represented by a triangle like the one below, with the bottom of the triangle being the earliest supports provided at a universal level/tier, for everyone in a population without any identification of ill health or risk. In childhood, these are whole school mental health promotion programs such as social and emotional learning (SEL; see CASEL), or Every Moment Counts that teach all children basic mental health skills and embed practice of these in the school day to help increase the general mental health and happiness of everyone. While it is harder to reach all adults, this might be providing education on positive psychology practices such as mindfulness or kindness to everyone in a population, perhaps through an activity like a morning yoga session at a work conference to help attendees begin the day refreshed and ready to learn. These universal interventions don’t seek to identify any kind of illness or problem, but they do try to prevent issues by building positive mental health in everyone.

Figure 1: Public health triangle across the lifespan with practices consistent with Wraparound/Systems of Care in childhood and Recovery in adulthood. In the segmented center triangle are the principles of wraparound on the left, recovery on the right, and shared principles in the center. They are roughly situated in the tier where they begin to guide practice, beginning from tier 1/universal at the base, to tier 2/targeted at the middle, and tier 3 at the top. Practices at lower levels continue to apply to higher levels.  Potential interventions and activities congruent with Wraparound/SoC principles are featured at universal, targeted, intensive levels are featured on the left. Potential interventions and activities congruent with Recovery principles are featured at universal, targeted, intensive levels are featured on the right. Wraparound Principles (Dennis & Lourie, 2006): Recovery Principles (SAMHSA, 2012).

Abbreviation Keys:  Child - IEP/Individualized Education Plan, EMC/Every Moment Counts Adult - CCBHC/Certified Community Behavioral Health Clinic, RAS-DS/Recovery Assessment Scale - Domains & Stages, NEW-R - Nutrition and Exercise for Wellness & Recovery

A public health approach assumes that providing support to everyone will help everyone be more resilient so that when they face adversity, they are more likely to be able to bounce back. The second or targeted level/tier of this model tries to identify people who have encountered risk factors and looks to providing them some extra support, still without necessarily labeling them as having a condition indicating mental ill health. Children may be at risk due to things like learning disabilities, a history of trauma, stigma or bullying. Universal interventions are still important here, but we add small group interventions, supports like peer mentors, and helping individuals and people around them to develop strategies to cope effectively with trauma responses. Small group interventions might do things like identify strengths and encourage activities to broaden those, or perhaps facilitating restorative circles to manage conflict better.

The main idea behind a public health approach is that if people are in groups and communities that receive robust supports at the first two tiers, fewer will develop the symptoms that warrant diagnoses and require intensive tier three intervention. This is important because outcomes are better when people can avoid significant behavioral and mental disorders. That said, there are best practices that increase the likelihood of good outcomes even at this level of need. These are practices and supports such as wraparound for children and youth, and recovery for adults. The center of the first figure, looks at the intersectionality of the principles of wraparound and of recovery which ground best practices in mental health across the lifespan.

Occupational Therapy across Populations, Groups and Persons

* Multi-Tiered Systems of Support is the term used to apply to the use of the public health model in school settings.

The public health model applies across all disciplines working in mental health. Because I am an occupational therapist, it has been important to look at the Occupational Therapy Practice Framework (OTPF) in the context of the public health model. While the OTPF uses the terms populations, groups and persons, those fit neatly into the universal, targeted and intensive tiers of the public health framework as pictured in Figure 2. What is unique to occupational therapy is our focus on helping people engage in the occupations (social participation, activities of daily living/ADLs, independent activities of daily living, sleep/rest, play/leisure, work, health management) that they need and want to do while at the same time using occupation as therapy. This all just means we have a focus on function and doing both in therapy and as the ultimate outcome for the people, groups and populations we serve.  

Buyer Beware: The Troubled Teen Industry (TTI)

32 years after it caught my family in it’s web, the troubled teen industry is alive and apparently thriving. They drew us into their hell in 1990. Aaron had been cycling rapidly through depression and mania and was regularly overcome with a frightening alternate reality that I could not reach into to provide any comfort.  In that place, he saw suicide as a better death than the one his delusions had in store for him.

He spent 3 weeks in a psychiatric hospital that gave us a neuropsychiatric evaluation with fascinating information about what they saw as an imbalance between the hemispheres of his brain, but no practical suggestions to help him function any better. That stay just about exhausted his lifetime cap for insurance coverage for mental health, and Aaron was still hallucinating and intermittently suicidal upon discharge. The hospital recommended long-term treatment but had no solutions for how to pay for it short of relinquishment of custody to the state of Texas.

I called a psychiatrist in Colorado whose secretary I had stalked a year or so before until she convinced him to see us. He said he knew a place where we could, if we moved up there, keep Aaron home at night. We desperately wanted to believe that someone somewhere had a solution.

Straight Inc. was the single worst choice we could have made. I spoke to a mom whose son had started there at 12 years old, and she believed it was helping. We picked Aaron up at the hospital and drove to Dallas for his intake. To pay for it, we came home and began selling everything of any value, Dan’s drum set, his military dress uniform, and eventually even our home so we could move up and Aaron could live with us again. That never happened.

We moved all right, but he could not progress to the stage that allowed him to live at home. We did not know about the profound abuse that he was experiencing, but we should have. There was an incident right after I opened my home to other children in Straight. I walked in on 2 “old-comers” (youth in upper phases who were responsible for managing “new-comers” like Aaron) restraining a boy. I had heard them yelling and opened the door to see them holding Cabby on the floor by force and yelling at him. I stopped them and that behavior did not occur in our house again – or did they just learn to be quiet so I would not hear them?

Every day, the “phasers” (youth in the program) went to “the building” where they spent their days in confrontational encounter style groups. They were made to sit up straight, military style in rows of blue plastic chairs with metal legs from early morning until we picked them up in the evening. There were dozens of very strict rules about where they could look, what they were allowed to say and when, even what they were allowed to think about. On Friday nights, families came together for our own group that sort of mirrored that of the kids. We were encouraged to confront each other and to confess our faults publicly. At the time, I had such limited knowledge of mental health and was in such fear for Aaron, I was willing to try just about anything that promised any hope at all.

After having separate youth and family Friday groups, we all gathered in a one large group, all sitting in those same blue plastic chairs, the parent group facing the much larger group of our children lined up in rows and sitting ramrod straight.  We were encouraged to confront our children lest they die of addiction. It was harsh and desperate. But then there were celebrations when a youth would yell “Coming home” and run to their families arms because they made phase 2. Aaron did not come home, but having put all of my eggs into this basket, it had to work, right? I was admonished not to quit before the miracle.

I should have known when his arm was broken and there wasn’t a clear explanation of how, but it did not occur to me that anyone would deliberately torture my child. Yet they did, as we would find out years later. For somewhere around 11 months, he was both physically and verbally assaulted regularly. Aaron was restrained, made to stay awake for days on end sitting in his underwear and being sprayed with water when his eyes began to close. His hallucinations began to merge with the reality he found himself in. When they failed to force compliance, they shipped him off to their original facility in Florida, while we stayed back in Texas bringing other youth into our home night after night. Straight was the lynchpin, around which the remainder of Aaron’s life derailed.

I began writing this blog after going to a mental health administrators conference and seeing an exhibitor representing a “wilderness therapy” program in Utah. I asked about their staffing and practices, and told him about my concerns. I watched his spine stiffen and his face close. I wondered if he too was a survivor?

How do you know whether a facility is legitimate or one of the many troubled teen industry programs that prey on children and their families? Here are my list of questions to consider:

• Ask about allegations of abuse. Google the facility and staff, and look for complaints.

• How do they deal with conflict or behavioral issues that come up? Do they use punishment (retribution) or restorative approaches (coming to consensus, enabling the offender to make amends).

• Are youth responsible for disciplining each other? (Many of those youth who “progressed” through the upper phases also struggle with having perpetuated the abuse onto someone else). This is very different than legitimate peer to peer supports. In authentic peer to peer support, the focus is on support, sharing lived experience and nurturing hope - they are not disciplining each other.

• How do they engage families? What transition supports do youth/families have as they exit the program? How transparent are they? Do they provide evidence based parenting guidance (vs toughlove)

• What are their thoughts on toughlove? It is a failed strategy from the 1980s that endorses often harsh consequences for undesired behaviors. TTIs incorporate it into their ethos. It persuades families that the abuse is therapeutic. It is not.

• What is the programs’ overarching therapeutic ethos or philosophy of change?

  o   Behavioral modification strategies easily escalate into abuse when they are not working, especially in the hands of an unqualified workforce. It usually doesn’t work well for children who have serious mental illness and/or histories of trauma.  Ask who imposes consequences and what do those consist of? If they advocate for breaking the youth down to build them up; don’t walk, run away.

  o   If they claim to use Cognitive Behavioral strategies, can they articulate what that means? (it has a focus on changing one’s thoughts to shift feeling states and therefore behaviors). Same with third wave behavioral theories such as Acceptance and Commitment Therapy & Dialectical Behavioral Theory (these build mindfulness and distress tolerance on top of CBT); do their practices match their stated theory?

  o   12 steps alone are not sufficient when working with people with mental illness, trauma histories, or teenagers.

• Who are their staff? Are they licensed (LPCs, SWs, MFTs, OTs etc have a code of ethics and are answerable to their licensure boards).  How often will your child see them and for how long? Who is with your child most of the day and what external training do they have? It is sadly common to hire people with no experience, knowledge or skills, and then put them in charge of so called therapeutic activities. This is a red flag. Get a list of staff and google them, TTI staff seem to pop up in other abusive settings when their last gig closes down.

• Where have the administrators worked before? Again, they seem to pop up in another like program when one closes. Google them.

• Do they allow youth in their program to speak to family and others without a chaperone? Can you call your child whenever you want?

• How do they use restraint? Who restrains and how frequently? Are restraints part of their routine or do they recognize them as a sign that something needs adjusting in the program?

• Trust your gut, if something feels wrong, leave. Sometimes doing nothing at all is better than doing something that will make it all worse. And it can get much worse.

• Look especially critically at wilderness programs, boot camps, boarding schools, even religious programs. Are they licensed in your state and what does that mean?

• Ask the TTI survivor network to do some searching for you info@endthetti.org

Are there advocates or family groups that can help families find and access sound alternatives that support success? We need more family and youth run advocacy that are independent of the organizations they seek to hold accountable. Your state may have a Statewide Family Network, Federation of Families chapters, or networks of mental health providers who may be able to suggest alternatives. See if there are strong wraparound or early intervention for the prevention of psychosis programs; perhaps even school based supports. There are solid alternatives that have much better outcomes and will be worth the investment in time. For help finding family run organizations, the National Family Support Technical Assistance Center (www.nfstac.org) is a resource, as is the National Federation of Families (https://www.ffcmh.org).

Here are some videos to watch about TTI:

https://www.youtube.com/watch?v=9rrQ3KX39-Y

https://www.youtube.com/watch?v=Av0jhwRLOAc

You can also search #breakingcodesilience for more survivor’s voices

The Value of Experience

Lived experience versus a university degree. The recovery movement in mental health is founded on the value of lived experience. But experience without knowledge of the best practices in the field risks perpetuating ineffective practices. It is important to be grounded in the experiences of people on the receiving end of services and supports, but it is also important to know the current and upcoming practices and to have the capacity to critically scrutinize those. I suppose the question might be how to best achieve both these ends?

I am reflecting on something a good friend, who was also one of the early family to family professionals, said to me this week. She shared a statement by another early family leader who maintained that family to family professionals would have to obtain degrees to sustain the field. I am a family leader who, before I knew the field existed, pursued education because I wanted to help assure that there were stronger supports for families like mine in their communities than those I had experienced. I chose occupational therapy, but it could have just as easily been social work or counseling or any number of other disciplines. 25 years ago, my original degree did not teach me about systems of care, or wraparound, or trauma, or recovery. Decades ago none of the many mental health professionals my family found knew anything about those emergent concepts either.

The people who introduced me to the best practices that families raising children with mental health and behavioral disorders urgently needed were by in large not people with degrees. They were family advocates who knew those emergent practices, the reality of the systems that families rely on, and how to leverage organizational missions, state and federal laws and mandates to get children, youth and families the support they needed. They were people that families trusted, not because of a degree on the wall, but because of the shared experience of desperately watching our children fall into an abyss for which we had no solutions. Families who had been there before me could walk with me along paths that I had not considered. I could hear them because they knew the abyss. They had lived my fear and my grief. They knew my broken heart and ever so tenderly helped see a way forward.

So having taken my son to professionals with every kind of credential, why did I go to university for more of the same? I was seeking a holy grail. You see, families generally begin our journey wanting to find a solution that makes the condition holding our children back just go away, as a good dose of aspirin to a headache. Aaron was living on the streets, abused and in mortal danger. I was looking for a fix, some magic carpet that would swoop us out of the abyss and deposit us gently onto firmer ground. I had that first degree before I started to realize that our voyage was not going to end with Aaron restored to what I imagined was his potential.

So what of value is my education? While I didn’t learn about wraparound, recovery, or trauma (this was before the ACEs study that put it on the radar), my education did prepare me well. I learned to apply frames of reference to shape my practice, and to evaluate outcomes. I learned how to use myself intentionally and therapeutically. I learned how to modify and grade tasks to create just right challenges. I learned that there are much broader outcomes than broken versus fixed. Essentially, I became fertile ground so that when I encountered solid practices I could both discern them and orchestrate their application in divergent situations. My degrees have also given me credibility.

Degreed or not, family professionals without a deep knowledge of best practices and their principles aren’t necessarily helpful. Families who are bound to the agencies that they need to be holding accountable, and who don’t know federal and state laws or regulations, can’t effectively provide leverage to meet the needs of children and families. So family professionals serving children and families have to have some essential knowledge and skills that may or may not be obtained through earning a degree. They must dive deep into the practices, rules and regulations that are put in place to assure that children and families have their needs met. They must have experienced the abyss.

I believe that the best means of effectively serving all children, youth and families is through multidisciplinary partnerships among co-equals. Professional family partners bring their experience but they must also bring knowledge about best practices, laws and regulations, and sufficient independence to feel safe leveraging their experience and knowledge to advocate for the best possible outcomes. Do they need a degree to do that? Not necessarily. What they must have is respect and agency. They must feel free to speak out for the families they serve, and for all families. That may not happen if their jobs are tied to agencies they should be holding accountable. We must all advocate for family professionals to be in the front row wherever new strategies, policies and practices are being considered. Professional family partners should be held to the same high standards as other professionals in terms of ethics, knowledge and skills, and their experience needs to be respected in the same way my credentials are. We all have important contributions to bring to the work of building hope and recovery to youth and families.

Acceptance

This blog was intended to be written more than annually, but this year was hard. I feel like I am crawling out of a cave. And I really have had much less disruption than many. I am still employed. I am facilitating several more community based groups than I was one year ago. My mother, who has fairly advanced Alzheimers disease, survived COVID. Because she is no longer fighting to stay in her old community 4 hours away, we moved her close to me so I see her often now. She lives primarily in the present and I think she is happier than she has ever been in her life. Acceptance is working for her.

On the other hand, when mom caught COVID before Christmas, her memory care kicked her out to a fairly frightening jalopy of a facility willing to house people with COVID. We did finally clear out her house. This is the 5th time we have moved her, 4th time in the last 2 years. I missed the birth of my youngest granddaughter, and I am not that kind of grandmother. She was 5 months old by the time I was vaccinated and able to safely travel. Then there is work. What a year! I learned how to facilitate mental health groups, including crafts, on zoom just in time to teach students how to lead mental health groups online. There is so much of that class I would have never considered teaching online before COVID. I became the client for their learning to administer through zoom hands on assessment tools that they usually get to handle in labs. Just as COVID sent us all home, we began an entirely new curriculum with a second cohort that is being developed as we teach it. Because my mental health content occurs in their second year, I have spent the past year teaching other content that I have to first update myself on (practice has changed a bit since I learned it a couple of decades ago) and then study intently before teaching.

All of that has left not nearly enough time for writing Aaron’s book, keeping up with this website or the regular clearing out of spaces that I typically do end of each semester. I have so many piles everywhere. Did I also state that we decided to repaint the house a lovely spring green and replace our windows ourselves? And then finally, as the spring semester drew to a close, I had the opportunity to lead a dedicated group of students as we built occupation for somewhere around 2500 unaccompanied minors in the emergency shelter closest to me. Turns out, just the preparation for activities with that many boys is a massive task. I still have a lot of writing to do for that work, but the boys are all safely transported now to other spaces that are ready for them. And we helped create a safe and supportive space for them to catch their breath, while once again affirming the power of occupation!

This summer my primary job is to write. I have carved out the space to, I hope, complete Aaron’s book and get it out the door. I still have several ongoing community groups plus a couple of new ones that students will need supervision for, and a seemingly self perpetuating long list of tasks that are way overdue. But this summer, I have the opportunity to practice acceptance and leave some of that other work undone another season. Perhaps acceptance is really all about ranking the importance of my effort. I remind myself that my priority is writing and so other tasks will certainly get less of me. I may not stay on top of some things that others see as priorities. I may run in through doors winded and askew, and wing it a bit … okay, maybe even a bit more than is usual. I will model adaptation rather than perfect preparation. I may share problem finding and solving instead of neatly prepared solutions. Really, when I think of the journey Aaron took us on, these all seem like small things to accept.

Perhaps the bigger bit of acceptance is diving back into that journey and looking again at opportunities missed as I try to thoroughly lay out the paths we might have taken instead. I have to ask myself if I have allowed all of those other everyday priorities to clutter my time as a means to avoid this? So, today, I dive in deep again, knowing that acceptance is key. I accept that I made choices with insufficient knowledge, that the better path was obscured or sometimes even just a virgin landscape, untrod. I also have to accept the grief that comes with knowing now what I did not know then.

I remind myself that I seek to clear away the brush so that another mama might see where to walk. And I accept that there will be still other paths that are yet unknown. I have a season to write and that is what it is.

Occupational Therapy and Disrupted Ordinary Occupations

April is the month that we celebrate occupational therapy in the US every year. As we begin the last week of April this year, we have been sheltering in place for 5 weeks. As a discipline, occupational therapy began over 100 years ago in response to circumstances that mirror those we are struggling with today in many ways. We began using “occupation” as therapy with people who were deprived of the basic routines and habits that we are today again realizing are so important to our health and wellbeing.

First, we began supporting people with mental illness who had been confined to the abysmal insane asylums in the late 1800s and early twentieth century. They were isolated from home and routine, and often subjected to cruel and inhumane treatment. In response the Moral Treatment movement sought to elevate the standard of care and advocated use of conversation, recreation, and light manual labor to build regular routines that were restorative. At the same time the Arts and Crafts movement was decrying the loss of craftsmanship and routines secondary to the industrial revolution. Occupational therapy began at the junction of these two movements with the use of daily routines and patterns that included crafts as well as activities of daily living.

Later, occupational therapy was extended to other populations who had disruptions in their daily occupations such as people confined to tuberculosis asylums, and those returning from war with what was then called shell shock. In mental health practice, we stayed in psychiatric hospitals until fairly recently when those hospitals largely shifted to for profit models that meant decreases in skilled staff. I worry about how people are faring in those institutions without us but that is another conversation.

I came to occupational therapy after Aaron was shunned by every other therapy in my community. Their understanding of mental illness and their roles as helpers did not match his needs and they were not sure that the tools they knew would be effective. We were on our own. When he landed on the streets at 15 years old, I decided to become a therapist that could help families like mine. I knew that I needed a skill set that went beyond the expectation of fixing mental illnesses. We had been through counseling since kindergarten and while it gave us some useful skills, they were at a loss as to what they could do to help. I really needed a framework that would equip me to help youth like Aaron figure out how to have a life anyway.

I had found that my work as an artist opened the door with some youth, but I needed to know what to do with those opportunities. As an occupational therapist who works in mental health pretty much exclusively, I use doing as my intervention. It is still very much about building health promoting routines and habits. I teach about the ordinary rhythms that make up days and nights and how to facilitate them. It is about helping people craft a life that enables them to do what they want and need to do. Sometimes that is building and practicing communication or organization skills, or just ordinary self care. It is about building community and relationships. That includes advocating for the capacity to have fun, voices that are heard, and safe spaces. Sometimes it is just about living life anyway.

So what does all of this have to do with Covid 19 and the social distancing we find ourselves in? We have had our routines disrupted, sometimes our relationships feel far away, and for some even their livelihood is threatened. As an occupational therapist, my intervention is all about that gap between what people need and want to do, and where they find themselves instead.  Usually my work is about sparking creativity and hope, and what we call an adaptive response, which enables people to build opportunities to thrive. Sometimes it is also about adapting environments to help those enable ordinary occupations rather than disable people. I work with people to help them figure out how to succeed every day. I am an occupational therapist!

Wraparound and the Importance of Fidelity

Today marks three years since Aaron’s death. The start of our fourth year without him and four of my birthdays without hearing his voice. He always called for any birthday or holiday, and every single Sunday. His absence still feels like a gut punch and I still wake up crying.

This week he came to me in a dream … he was five or six still with that white blonde hair, about the age of this picture but at the end of a summer playing outside. He was coming up a set of stairs I was going down, I dropped down and sat holding him telling him how sorry I was and how much I love him, until I woke. I tried going back to sleep, to that hug but I just could not get back there. It is a metaphor for much of our time together.

I so want to have been smarter back then and not so willing to trust people who thought they knew what to do. It was an era when behavioral and medical models reigned, and neither of those did us any good.

Way back then, in the 1980s, we were sending massive numbers of youth to residential treatment centers (RTCs) for long periods of time at great expense with relatively limited success. In 1982 the first Unclaimed Children study by Jane Knitzer found that two thirds of all children with severe emotional disturbance were not receiving what they needed. Aaron certainly was not. The Child and Adolescent Service System Program (CASSP) was funded in 1984 (about the time this picture was taken) and it was based on six core principles which said that mental health services for children and youth with or at risk of developing severe emotional disturbance should be child-centered, family-focused, community-based, multi-system, culturally competent, and in the least restrictive settings possible. Systems of care and wraparound grew out of CASSP and began as an effort redirect resources to wrap around youth in their communities. Karl Dennis did work with families in really hard circumstances on the streets of Chicago, and from him we got the principle of persistence, which means we do not give up on youth and families in wraparound, ever. About the same time, Alaska who had been shipping their youth to RTCs in the lower 48 states only to have their progress unravel once they came home, decided to bring them all home. They hired John Vandenberg to help.

Wraparound done well is a miracle. But what does “done well” mean, and how do we get there? 35 years later lots of programs claim wraparound but many do not produce much in the way of outcomes for youth and families. Done well is perhaps best measured by how well those programs live up to the core principles of wraparound. Those are as follows:

1. Individualized This is the difference between wraparound and traditional practices in which the director selects several evidence based practices and commits their resources to those. Traditionally, then when little Aaron and his family come to their intake, they select which of their practices they believe is closest to fitting Aaron’s needs and give him that service, or if they decide none of their services fit, they turn he and his family away. Aaron had providers who knew behavioral techniques and so that was what they provided, whether it fit or not (it didn’t). Others, especially after Straight, realized that they did not know what to do for him and turned us away. Instead, wraparound identifies the strengths and needs of an individual child and family, and creates individualized supports to fit them.

2. Strengths Based My favorite principle! This principle begins with the idea that “even the most troubled youth have unique talents, skills, and other resources that can be marshaled in the service of recovery and development” (Cox, 2006, p287-9). it is about identifying child and family strengths and broadening them by creating enabling niches for them to experience themselves as competent and successful. As a parent, I thought that I needed to catch Aaron up to some standard and when he got close to succeeding at each of the milestones toward whatever goal, I raised the bar, thinking that I was helping him advance. But what it really meant was that he always experienced himself as not quite able to reach the goal. He was brilliant but that was not his lived experience. From a strength based perspective we should have spent a lot more time relishing his gift for language, perhaps finding a poet to mentor him. We could have leaned into football which he loved and as a big kid, he was good at. We could have expanded on the little job that he loved in my friend Betty’s art shop. He had so many gifts that we gave too little attention.

3. Culturally Competent This principle speaks to the importance of respect for individual family culture. It means I do not get to push my white suburban ethos onto everyone else. I meet families where they are and honor their norms. As a family, it means when I need to say fuck this, you don’t get to tell me that my language offends you. It means seeking to understand the street culture that Aaron chose to live in and our families accommodations to maintain a relationship with him.

4. Family Voice and Choice This is about being Family Driven and Youth Guided/Driven. That means NOTHING happens without family and youth voice. They are part of setting their own goals and developing their own plans, those are not prepared in advance by providers. Families have support from other knowledgeable families who have walked in their shoes and know the ropes. Families and youth are part of developing supports and services at the systems level, and they provide oversight to assure that services are meeting their needs and those of other families and youth. We had no one in our community who knew about the changes that were happening in children’s mental health. They did not know wraparound and all they could give were interventions that fit us like a tight pair of wool underwear.

5. Team based This means that all planning and progress monitoring happens in the child and family team meetings. Those start weekly and it is in the team meeting that strengths are identified and goals and activities planned to create spaces for those to grow. It is where plans are developed to address needs. Providers do not come with predetermined goals or a pre-approved slate of services in high fidelity wraparound, but rather they facilitate the team’s identification of strengths, needs, resources and strategies that are tailored to those. I imagine sometimes who might have been on Aaron’s wrap team and what we might have come up with. There was the young priest who would sometimes take him to play pool, my friend who owned an art shop and created a little job for him, my art teacher who never forgave us for moving away with him, his grandparents, his football coach … we had people who would have been happy to help Aaron and our family succeed. But none of us knew what to do. That brings us to natural supports.

6. Natural Supports 50% of the team are natural supports, which means they are people identified by the family who are brought into the team to provide a sustainable network long after the professionals have moved on. They may be extended family members, neighbors, teachers, pastors, coaches or anyone else that the family identifies and who are willing to provide support. Activities that the child and family team choose to build on strengths are often embedded in community rather than professionally driven “services”. For my youngest son, Ben, his support was a lawn mower repair man who took him in and not only taught him to repair lawn mowers, but also to weld. Through his mentorship, Brian helped Ben forge an identity from his interest in mechanics. That identity enabled him to persevere through school as a young man with severe dyslexia.

7. Collaboration Families like mine who are involved in multiple agencies have one plan. This means that the school, mental health agency, juvenile justice and even child protective services all need to figure out how to get to the same meeting. This is a stark contrast to the common practice of running families to multiple meetings each with their own mandates (and whose demands are often in conflict with one another). This occurs best within systems of care which create overarching connections between child serving agencies. They may also create joint structures such as flex funds which child and family teams can access to pay for nontraditional supports to meet needs. We were in so many systems; school, juvenile justice, and mental health. None of them spoke to each other and each had independent sets of competing demands.

8. Community based Wraparound is an alternative to residential treatment centers and hospital based care. Instead the idea is to WRAP supports around the child and family in their community. This was so different that the solutions offered us … it just would not have occurred to anyone that I knew to use the people and activities all around us as opportunities.

9. Persistence No child or family is kicked out of wraparound, EVER. We don’t blame them if what we are doing is not working, we just shift strategies. Aaron was kicked out of everything he was ever in. Unfortunately we did not know about wraparound for Aaron, and neither did anyone else in our community. We were either not invited in the first place or Aaron was soon on his way out.

10. Outcome-based Wraparound teams do constant progress monitoring, If what we are doing is not working, we do something else. Done well, wraparound does not continue forever … children and families should be making progress … if not we double down and figure out what needs to happen differently.

I started this post a bit over two weeks before the pandemic began to disrupt my and everyone else’s habits and routines. I worry about the Aarons I know today. Are they getting what they need? Are the already limited resources dedicated to them going to be siphoned away? How do we maintain the community relationships and routines, and enable them to experience and build their strengths? Are their child and family teams meeting and working through the challenges we are living through? Are we applying these 10 wraparound principles in the midst of this upheaval?

How are the children?

Another New Year, Decade: Back to Writing and Reflections on Aaron Then & Now

In this new year, I hope to get back to a regular writing schedule. I made it through the third Christmas since Aaron died. I put out most of my decorations this year. Aaron loved Christmas and figured out how to get home to spend it with us most years. This year, my husband and I went on a road trip adventure to spend the holiday with our middle son and youngest grandchildren. They are pure joy.

Aaron’s brothers benefitted from our having to become much more skilled parents. He taught us what was most important and what mattered least. We learned to focus on their strengths and balance time to assure that they experienced themselves as competent. Yet, Aaron’s brothers lived with his long shadows cast across even our joy. Each milestone celebrated with his younger brothers also reminded me of one that Aaron would never see; scout campouts, middle school, high school, team captain, prom, so many graduations, so many school career preparations … this Christmas also had those shadows.

A tragic consequence of Aaron having reached his lifetime maximum mental health benefits at twelve years old was that we lost the benefit of any vetting of services. That is how we got to Straight Inc. It seemed better than relinquishment to the state to access care which was the hospital recommendation. I so want to go back in time and tell them all to keep their opinions and just take him home instead, but I can’t go back. Aaron came out of Straight Inc at fourteen years old, traumatized and terrified. His dad and brother and I had also experienced trauma, having traded in the home we built in the community we knew for a dark, run down rental in a far away Dallas Texas, in a neighborhood that hated our family and especially the 183 youth that we took into our home at the rate of three to nine a night over the long nine months we operated a host home for Straight. The neighbors were loud and clear in their opposition to our living among them. We gave up the support of friends, family, and church, the security of work, and trusted our precious son to an unlicensed facility who not only lacked the most basic skills needed to help him build mental health, they abused him. Across the country, promising practices such as wraparound sought to identify and build youth strengths, and to wrap supports around youth like Aaron in their communities rather than send them far away to institutions. But no one in our community knew anything about Wraparound or any of the other emerging practices that might have changed our course.

After Straight no local counselors or other mental health professionals knew what to do. Their toolbox contained only the tired behavioral tools that we had already worn down. They did not want him in their groups because they feared his influence on the other participants. They did not know how to put the psychosis genie back in the box for him and it would be years before early intervention and prevention programs with best practices for psychosis would be developed. Because they did not know what to do with a fourteen year old trauma survivor who heard voices and ran from demons they could not see, the professionals we had access to used the only understanding they had. Their labels framed their understanding (or lack thereof) which cycled back to the behavioral models that had already failed, and whose damage was already overdone. The sanctioned mental health professionals did not know what to do with either early psychosis or trauma. There were long wait lists for the public system which at least had some experience with severe mental illness, if not much efficacy. In Texas, these problems persist today.

As I began to write this blog a few months ago, I was beginning to work on writing my experience as Aaron left home for the streets at age fifteen in the book. This may be why I allowed myself to get distracted and let such a long time lapse before getting back to the writing for this blog. That period after Straight was among the most painful periods in my life. Straight itself was horrible but I had been ignorant of the torture Aaron was experiencing there were plenty of people telling me a miracle was just around the corner. I had hope, however misguided, and now that was gone. I knew Aaron was in peril and I just could not keep him safe. Initially, he stayed close by in Deep Ellum, near downtown Dallas living in abandoned buildings. I created flyers and another former Straight host home mom and I walked the streets in the summer heat, posting them on dirty store windows and rough wooden utility poles, asking every passersby if they had seen him. We gleaned no information but later found out that he followed behind us collecting the flyers which he used to wallpaper his squat.

It was not long after that he began hopping trains to whatever city they stopped in. Before cell phones, we established an 800 number that he could call home with. On a bad day, when his paranoia and delusional thoughts ruled, he might call home four or five times a day. We would work through what threats were likely real and which were probably not. For a long time we tried to make him come home and stay, but there weren’t resources in Texas to help us support him.

Regrettably, we resorted to the justice system in an effort to force Aaron to stay home. He just learned more street skills and was recruited by predators and hate groups. They were more than willing to create the illusion of belonging for him. Later, a staff member walked him out the door of the state’s juvenile justice “treatment” facility and told him to just leave. He was harassed and beaten by our local police force. The travelling homeless youth were at least a big step up from the terrifying skinhead gangs. Other traveling youth began to call my 800 number, sometimes in crisis, sometimes just to talk, and sometimes to let others across their network know where they were from San Francisco, New York, Cincinnati, New Orleans, Portland, Montreal, Toronto, to Vancouver. They traveled freight trains across the US and Canada.

I became an occupational therapist because I could not curl up in a ball and die. However odd our routines, I was still Aaron’s primary support and I had two younger children. I wanted to contribute to the lives of families like ours and children/youth like Aaron. I knew the solution could not rely only on remediating psychosis or depression or mania or anxiety or any of the behavioral labels we went through. It could not rely solely on resolving symptoms or behavioral issues. I was a skeptic but in occupational therapy I found a discipline I could use to help people figure out how to live a life anyway. Our focus is on helping people identify what they want and need to do and very pragmatically on what facilitates or inhibits participation.

Aaron has contributed much to the field of mental health. His younger brother became a MedPsych physician (meaning he is a physician trained and certified in both internal medicine and psychiatry) and is practicing and teaching other physicians. I practice occupational therapy in mental health and teach to attempt to create the potential for more robust resources for people living with mental health needs. I hope Aaron’s book gets his voice and experience out and that we can use it to accelerate progress for children, youth, and families, perhaps before another twenty five years pass.

Occupational therapists use occupation or doing as our process in therapy. We are often problem solvers. We might modify environments to meet people where they are and/or help individuals build their adaptive capacity and skills so that the challenges they face become doable. We should be where it is that people need and want to do things, whether that is at home or elsewhere in the community. What we do looks very different person to person. It could be focused on getting dressed, preparing breakfast or accessing transportation for someone who needs modifications due to the impact of a physical injury or disease. It might mean teaching someone with sensory sensitivities strategies to manage difficulty tolerating sights, smells, or textures effectively so they can enjoy a picnic with friends and family. It could be building a game with a teenager with a trauma history to teach and practice effective coping strategies. It could be building a visual schedule with a mom who cannot read but needs to learn to care for her child with a disability. It could be setting up exercise routines and practicing cooking healthy meals for someone with diabetes brought on by their psychotropic medication. It might mean building and sustaining a recovery group/community for people with mental illness. We individually tailor active strategies that enable what people want and need to do. We have been working with people to build capacity to do what they want and need to do for more than 100 years, and we began this work with people with mental illness when traditional practice was to confine them to squalid institutions. Way back then we began by building healthy routines and habits, and productive occupations to enable people dignity and increased quality of life.

Unfortunately, Texas still does not recognize occupational therapists as mental health professionals, so generally people with mental illness are about the only disability population who has almost no access to us. Generally this is because the very disciplines who did not know what to do for Aaron are concerned that we will encroach on what they see as their turf and have opposed legislation that includes us. They cannot see what they do not know how to do. They still often lack the whole range of skills needed to support youth and families living with severe mental illness. Certainly they are unfamiliar with the range of disciplines and practices that people with mental illness benefit from in other places as well as multidisciplinary models that include occupational therapy from early psychosis prevention to community outreach models. I still practice in mental health all over my community and I teach to prepare new therapists to support people with mental illness in whatever other practice areas they may encounter them, and in an attempt to assure that someday there will be more robust supports for youth (and later adults) like Aaron who present with symptoms beyond the skill sets of our current systems.

I would like to say that, twenty five years after Aaron landed on the streets, families in my community have access to more responsive and skilled systems, but I know this is not true. We have made some progress, foremost that there is a kind of limited access to a version of wraparound in our community mental health center. It does provide a very prescriptive menu of supports that can be useful, but it falls far short of fidelity to the model’s principles which we will discuss in a later blog. And while we are not supposed to have wait lists, we do. They are just renamed and called “interest lists” and families in crisis still have long waits. Texas has passed, but not funded, laws that are supposed to build capacity for Multitiered Systems of Support in Texas schools which would make a giant leap forward should they come to pass. Trauma Sensitive/Informed School training seems to have some traction in many areas. These are all hopeful developments. And our Community Resource Coordination Groups have been sustaining since Aaron’s crisis, but like us, most families have no idea they exist.

Desperate families still come to the end of their resources and their children are still at risk. We have family partners inside the community mental health centers but most families do not have access to them and they are constrained by the system that provides their salary. Independent family to family resources are few and far between, and most of us are volunteers which limits the time we have. There is much to be done.

Fette brothers 1993

Deep Ellum

Violence: Myths versus Reality

Words have consequences. When tragic circumstances like the recent shootings occur, our national dialogue seems to veer far from reality when it comes to the relationships between violence and mental illness. Unfortunately, I have experience with violence and with mental illness. I hope that I can use my brother and my son to illustrate a few facts.

First, my brother Scott was a person who lived with paranoid schizophrenia. He also grew up with severe dyslexia that he was able to overcome in his twenties. In his thirties, he was excited to be accepted in a graduate program in another state to pursue a degree in history, and stopped in Oklahoma City to visit a friend along the way for a few days. He and the friend went out for drinks on the evening of Valentine’s Day. His friend’s girlfriend felt really angry that her boyfriend chose to go out for drinks with his friend rather than do something with her. According to neighbors, she took Scott’s backpack apart, throwing its contents all over the front yard, while loudly screaming profanities. She then went inside the house, pulled a gun from one closet, bullets from another, loaded the gun, and then sat on the couch by the front door to wait for Scott and his friend to return home.

When they returned, the friend and girlfriend got into a loud argument, again according to the neighbors. We believe that Scott spent this time carefully repacking his backpack, because everything was back in its place when it was recovered still sitting on the front porch later. He then left the backpack just outside the front door and went back into the house, we think to say goodbye to his friend. By that time his friend had gone to sleep in the back of the house and the girlfriend had again taken her seat on the couch, with the loaded gun unfortunately. She initially reported that she yelled at Scott who just ignored her and kept walking toward where his friend was sleeping. She reported feeling really angry at what she perceived as this slight (in fact he would have been overwhelmed at the noise and would have ignored her rather than engage her). She aimed the gun at him and it initially misfired, but she shot again and hit him in the back of the head. He never regained consciousness, although it took him a couple of days to die.

Scott’s role as victim is a more common role in violence for people with mental illness than perpetrator. His killer also illustrates what the evidence points to regarding characteristics of the perpetrators of gun violence, particularly mass shootings. She was angry, drunk, entitled, and had a history of domestic violence. While I will agree that she was “not right”, those characteristics really are not specific to people with mental illness. One could argue that she may have had characteristics of a personality disorder, but I don’t know that she carried one of those labels. She was angry that her boyfriend went out on Valentine’s Day without her, felt entitled and believed that she had been done an injustice. She was drinking and/or using substances which increases the probability for violence for any of us. She had in fact stabbed a young man the year prior but he had lived, and I was told that her family paid him off so that he would not press charges.

The evidence base around mass gun violence says that there are specific risk factors. Mental illness is not one of those. People who have committed acts of mass violence are very angry. They feel they have been prevented from getting some status or position or some thing to which they are entitled. They have a narcissistic perspective on the world and believe that the act of violence will somehow set the record straight about their grievances. They tend to have a history of committing acts of domestic violence. Pour alcohol or substances into that mix and you have the potential for disaster.

Do people with mental illness engage in violent behaviors? They can just like the rest of us. There are a few areas of elevated risk. The greatest risk or people with mental illness related to gun violence is for suicide. This is because guns are an extremely lethal means of attempting to kill oneself. Suicide, not homicide, is the greatest risk for people with mental illnesses, especially those with major depression.

There are a few other specific areas of risk. In early psychosis, there is a somewhat elevated risk of harm to others, usually family members or others close to the individual. Aaron described hurting a close friend of his when he was a teenager living on the streets. His delusions took over his thought processes and he cut the young man over and over. Thankfully his friend did not die. Street justice is harsh and other youth in their circle beat Aaron nearly to death as a consequence. With time, Aaron got better at recognizing when his thoughts were twisting off; we refer to this as reality testing. He developed strategies to manage his thoughts and decrease the likelihood that he would hurt someone. I sometimes have wondered if part of what kept Aaron from coming home was a fear that he would hurt one of us.

A history of trauma can also contribute to violence. Aaron was tortured at Straight. He was raped and beaten on the streets routinely. Aaron later reported a number of other episodes of violence directed at the people who preyed on street kids. He believed he had killed some of them in those altercations defending himself or others, but it was never clear whether those beliefs were accurate. He was beaten by police officers both in my community and likely many others that he found himself in.

Alcohol and substance abuse also contribute to violence, but they are sometimes coping strategies for trauma survivors as well. Aaron got into lots of fights. He went to prison over one in which he was drunk and the other party in the altercation was high and they started shooting at each other because an old skanky girlfriend told each of them that the other was going to hurt her. Thankfully neither died, but Aaron was the better shot and so he caught the charges.

Like Scott, Aaron also illustrates another side to violence and mental illness. But how much of that violence was related to the trauma he experienced in Straight and on the streets, and to his alcoholism, rather than his severe mental illness? I am going to argue that, other than the fact that his illness put him at risk for severe and prolonged abuse in treatment, on the streets, and in our justice systems; all of which also predisposed him to alcohol and substance abuse, his mental illness itself only increased his risk during that period of early psychosis as a teenager.

So, to quote the youth who survived Parkland, I call BS, on the idea that we should blame mental illness for the recent mass shootings. Instead we need to look at what we are doing to perpetuate entitlement, narcissism and cults of anger and resentment. Do NOT lay this on the backs of people with mental illness. They carry enough of our crap as it is.

I am going back to my brother’s story because it did not end with his death. At her trial, his killer invoked an early version of the Stand Your Ground laws, at the time called the Make My Day law. She claimed that, in the absence of any other threat, his mental illness made him “weird and creepy” and that alone was sufficient grounds to justify taking his life. A jury of 12 Oklahoma City residents agreed with her and she walked. Our demonization of people with mental illness has consequences. What about his right to life?

We must recognize that mental health and mental illness are two separate constructs. Mental illnesses are specific categorizations of symptoms that affect some people. Mental health affects all of us and occurs on a continuum from languishing to flourishing. People who perpetuate gun violence may like my brother’s killer have crappy mental health but not a mental illness. An inclusive culture that creates opportunity for everyone; that leans into populations who feel isolated and left out, would go a long way toward prevention of violence and promotion of good health. But I fear we will not reach those at risk of violence if we wait until they are adults to begin to attempt to find them. They do not see themselves as a problem and will not be seeking our help. Effective prevention will need to reach everyone in the population in order to reach those who are at specific risk.

Prevention almost has to start with children in schools because that is the only place where you reach nearly everyone. I do not see an imposition of a medical model that relies on imposing diagnostic criteria on people we deem to be at risk as doable. For one we just do not have enough data, and we need not wait until enough people kill for us to categorize them in some way that informs action. At a universal or population level we need to promote mental health across all people, including people at specific risk for violence. This means routinely identifying strengths and enabling participation in lives that have meaning and purpose for everyone. It means teaching social and emotional skills, effective strategies for conflict resolution, self regulation strategies, and empathy. These will be better accepted if we stop confusing mental health and mental illness, and focus on helping all children, and eventually adults, to live happier lives.

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My Family's Strengths

Strength-based practice is powerful. But it requires a deep, authentic belief in ourselves, our children, each other. It is not a silly exercise in stretching for off hand complements to be logged and forgotten, before shifting back to a focus on deficits to be resolved. It is identifying strengths as the solution. It is about taking the identified strengths and marshaling every resource we can think of to create opportunities or what Kathy Cox calls enabling niches. We spent too much of Aaron’s childhood trying to label his brokenness in the mistaken assumption that once we named it we would 1) fix it, and 2) having fixed it, Aaron would suddenly have positive mental health. His hallucinations, delusions, and behavioral outbursts were symptoms of his mental illness. By focusing the bulk of our attention on his illness, we failed to attend sufficiently to helping him build positive mental health.

Aaron had so many strengths. He spoke in full sentences with three syllable words at just over a year old. He was a gifted poet. He had a fantastic imagination. He was smart and resourceful. He was a pretty good artist. He was a loyal friend who loved deeply no matter what. He was a leader. He loved dogs and did a great job training and attending to their needs. He was a fantastic big brother who adored his siblings and they loved him. He was a beloved son who stayed connected to us over twenty five years living on the streets no matter where he was. He was the one of my children who remembered every birthday, every holiday. We spoke every single Sunday.

Our family has so many strengths. We love each other unconditionally. I sought help for Aaron from Kindergarten forward and attempted to do everything any of the professionals we found suggested. When they decided that I spent too much time accommodating Aaron and needed to have a more traditional family, I married the best man I could find. Dan and I love our children and readily gave up all we had built to try to get help for Aaron. He was more important. They were more important than anything else. We have a great work ethic and do not give up. We acted on everything we knew to do to get Aaron help. We were active in our church and they were willing to help way back then. In our original community, we had Aaron in football, art lessons, and scouting. When at 12 years old, his school told me to take him home, I taught him to write, we read great literature, and studied the world. We had solid routines and family traditions.

Unfortunately, we knew no one who knew what to do. Rather than pulling together a child and family team that could have included professionals who understood how to capitalize on our strengths and enable Aaron to flourish, as Aaron got sicker, we focused more and more on his deficits. He just became more and more discouraged, and as he spiraled downward, so were we. We were afraid, and in our fear became more and more controlling and repressive. Rather than having more opportunity to experience himself as competent, he increasingly experienced himself as failing.

At 12 years old he was suicidal and required hospitalization which nearly exhausted his lifetime mental health benefits within three weeks. They recommended that we relinquish him to the state of Texas to access long term care. Instead, we called yet another doctor begging for some alternative, and he suggested Straight Inc. Straight said that he could come home to live if we moved up to north Texas with him and took in other children. We did. We sold everything we had, moved, and took in 183 children that year. Aaron did not come home until he was kicked out nearly a year later. He was released with the same severe mental illness he started with, exacerbated by a year of horrific abuse. If the standard mental health professionals did not know what to do with him before his trauma at Straight, they really wanted nothing to do with him when he was released. None of the professionals running aftercare would allow him into any therapeutic groups. No one in our community knew what to do.

Rather than skilled supports, we found tough-love groups and others who were as ill informed as we were. It was not until Aaron landed onto the streets that I went back to school to try to figure out what went wrong, and what to do differently. Aaron’s experiences had taught me that there had to be a different path and it had to focus on how to help him build a life in spite of his symptoms. I became an occupational therapist.

By the time my youngest son began to struggle in the first grade, my husband and I were highly skilled parents. We knew better than to accept the demoralization that we had subjected Aaron to. We found a school that fit his learning style and allowed him to experience himself as competent. We capitalized on his gifts in mechanical intelligence. We found people to mentor him in small engine repair, and welding. He flourished. He still had disability but at 13 years old he built his own motorcycle from scratch, he was a working small engine repairman, he created fantastic sculptures and he was renowned in our neighborhood as an artist. We used the principles of wraparound to create opportunities, in spite of the systems in our community which sought to shift to deficits at every turn. We knew better. Aaron taught us better.

Resilience

Surviving trauma is hard work. I have spent decades figuring out how to keep moving forward and have found several practices to be key. Here is my short list:

1. I married well. I am not a great wife. I only cook on holidays, rarely clean, almost never do laundry, get in way over my head on one project after another, and am regularly distracted. My husband took on my oldest son and I as a package deal and stayed through hardships he could not have anticipated. Our spirits have been broken more than once but our path has made us more compassionate and laser focused on what matters most. We learned to rely on each other and have become a solid partnership. He supports my need to somehow make meaning from our experience by doing what I can to help children and families and enabling changes in systems … and the hours that these pursuits require.

2. Relationships are everything. I am not a great friend, really not even a good one. I do not return calls or emails well. I forget birthdays and do not make near enough time for the people I love. But I have remarkable friends who love me anyway. I trust people who share my experience. Those mamas who have fought for their children to be taught in our public school systems. Those mamas whose children hurt themselves and others no matter how much we love them. Those mamas who fear for their children who dance at night not knowing the danger that lurks around the corner. Those mamas who have seen evil in people and places once trusted, whose churches shun them, whose neighbors look away. Those are my people. Belonging to a group of my people is extremely important to my sense of myself as someone worthwhile.

3. Sleep is really important. Who knew? Once upon a time it was easy. Then Aaron had a hard time sleeping as a child, so I did too. I have at various points in my life been too willing to forgo sleep in favor of productivity. When Aaron died, sleep became difficult again. I put myself to bed 8 hours a night but did not sleep. In order live best I need 7-8 hours of sleep a night. I have learned I need somewhere around 9 hours down to get 7 hours of actual sleep. I attend to sleep hygiene. I slow down before going to bed, read a bit and allow myself time to wind down. I take melatonin, and if I did not sleep the night before, Benadryl. When I wake in the night, I breathe deep and say a Buddhist mantra until I fall back to sleep. I invest time and energy in my own renewal.

4. Movement. There is a lot written about the importance of movement, particularly in coping with trauma. I have dogs who push me to move whether I want to or not most mornings. I begin my morning walks in a fog, but it is habit and the dogs herd me into our regular routes. I hate exercise, but I do it several times a week anyway because when I am finished I feel better. I lift weights because I want to age well in my bones. I need to get back to Body Combat because I found relief as i envisioned the forces of greed and directed my anger at them with every kick and every punch … I miss that focused, physical release.

5. Mindfulness. Often, early in my walk, I feel the weight of Aaron’s absence, sometimes I cry and allow myself to just be there. I see him in the expanse of sky (particularly storms but that is another story) and I notice how heavy grief feels as I walk through it. I turn my attention to the trees above me and their particular nuances by the season. I breathe in deeply and hold to stretch deep in my belly and release my breath and pain simultaneously, slowly. I am reading Treleaven’s book about mindfulness and trauma, and he cautions the need to recognize that while mindfulness can be useful in integrating trauma, for those with post traumatic stress responses it can also bring forward sensory awareness of traumatic memories. I may veer into this but for me it is part of so many losses that need to be examined and I am okay with feeling them. I am not ready to let go.

6. Spiritual practice. Once I had a strong religious faith but right now I am not ready to forgive that faith for the role it played in Aaron’s abuse. I prayed without stopping and I let that prayer numb what should have been a fury that should have driven me to take my son out of harms way. Instead I trusted and allowed myself to believe that to do otherwise was to lack faith; to stop before the “miracle”. Today, I cry every time I enter those churches because, in his silence, that god conspired to hurt my child. I still have a deep spiritual practice but I find that spiritual renewal in other faith traditions braided together. I sit quietly at Aaron’s grave most Sundays, burn sage and lavender, meditate with Mala beads and the natural world.

7. Altruism and hard work I practice kindness and good work as a spiritual walk. I seek to sublimate my experience into work that has meaning. Victor Frankl said “He who has a why can live with any how.” I seek to make our story mean something. We spent too much resource trying to find the right label when Aaron was little and none of that added to his quality of life. So I looked for a discipline that would ground a focus on living well, on building habits and routines, building relationships, and enabling participation. I became an occupational therapist because I wanted to figure out how to help people like Aaron have a life anyway, voices be damned. Unfortunately, systems have really changed very little over the past 40 years, and families are still left hoping that finding the right label is going to do something. There are practices that work well but often they are so poorly funded and inadequately staffed that they bear little resemblance to what they claim to be. I teach so that I can prepare therapists to support people like Aaron but worry that they will not find work that will sustain them. I seek to fill impossible gaps in my community because my salary is covered teaching and my students need to practice skills. There is so much to do, and always so much left undone.

8. The stories I tell myself. Brene Brown used this phrase in her recent Netflix special and it is a good one. I reframe. I tell myself this is good work, that Aaron’s pain has meaning. I refocus on savoring the joy of grandchildren, glorious flowers, the time I will one day carve back out to paint, sculpt, create. I watch closely the stories that I tell myself and edit them to assure that they build rather than destroy my spirit. My life is hard enough, I work not to make it harder, even to lighten my load in what I say to myself.

I am a work in progress, never done. I try to care for myself in all that I choose to think and do. I make lots of mistakes and often reset my course. I honor that this path is hard and I deserve joy. I also know that the sadness deep in my soul will always be, and I embrace it too.

Family Trauma

This week I traveled to Washington DC as a lonely family voice in a meeting of national organizations and agencies that was about family engagement. My national family run organization heros backed out in protest because while the featured speakers were eminent researchers who have studied families at length, none of them had lived experience with any kind of struggle to get their children what they needed. The confrontation created a crisis that hopefully will result in continued progress in the coming years. It is really hard for systems to take on what they perceive as outside perspectives. As a family advocate, I am familiar with being “outside.”

Having made it through the day without incident, I was exhausted. Upon reflection I realize I just shut down. It is a type of trauma response for me … I may smile and look attentive but not be fully present. I am really skilled at compartmentalization but even that comes to a hard stop sometimes. When it is unsafe, I sometimes just recede inward. In trauma language it is to “freeze.” It is a dissociative response born of experiencing danger that one cannot escape. Trauma is defined as witnessing or experiencing actual or threatened death, serious injury, or sexual violence, and may include indirect exposure to aversive details of events. Other reactions to trauma include flight or fight responses.

I have come to realize that raising Aaron has been fraught with trauma that he nor I could not escape. First, his school experiences were threatening. He was a difficult student and his teachers disliked him. While he had significant learning disabilities, accommodations were not made to support his success as a learner. He went to school each day prepared to fail miserably. As his mother, I sent my son to school each day knowing that he was being hurt. I believe the educational neglect constituted sustained serious injury. As those stressors combined with what was probably a genetic potential for mental illness, he began to experience severe mood swings and hallucinate. As he grew his delusions and hallucinations grew dark and often he believed he was doing battle with forces that wanted to kill him. Those were repeated exposures to violent and dangerous threats that I could not protect him from. As his mother I often engaged in intense physical restraints to prevent him from injuring himself. When he reached the limit of our healthcare resources at age 12 but was still suicidal, I faced the imminent threat of the death of my child. Because I live in Texas where resources are scarce and because I had no knowledge of best practices that existed in other places, I subjected my son, myself, and our family to a predatory abusive tough love style “treatment” center. Once outside the vetting of legitimate health care systems, we were easy prey. Having exhausted all other resources, we remained in that abusive setting for nearly a year. We still did not understand that Aaron had experienced trauma, nor did we understand our own. Aaron was hypervigilant and sometimes aggressive. He was predictably reacting in fight and flight modes. We had access to no skilled mental health supports. Soon, he fell in with other traumatized youth who knew how to live on the streets.

In an effort to keep our child home and off of the streets, we turned to the local justice system. They just heaped on more abuse. My child was soon hopping trains from one city to the next. He stayed in one place until the delusions became too great and then just jumped onto the next train out. He was beaten, raped and abused by predators. I watched as children I got to know through him died. I lived in fear. I froze a lot.

I also began to fight, I went to school and became an occupational therapist. I became a family advocate. I wrote letters to my state and national representatives and testified about our experience and what our children needed. I have tried to follow Victor Frankl’s example of making meaning as a means of coping with existential threats, but that did not completely save me from the constant threat of the death of my child that persisted for the last 30 years of his life. I compartmentalize a lot, sometimes just freezing that terror. Sometimes flight predominates and I just must isolate. It is hard to trust. Mostly, I fight. I am a warrior mama, but 30 years is a long time. I am exhausted.

A difficulty with the experience of chronic, unrelenting trauma is that it creates survival habits that are not always useful in ordinary time. I may avoid that which needs to be confronted. I may shutdown and freeze, then have to separate myself to give my brain a chance to come back online. Occasionally anger washes away my ability to reason. I have to be vigilant and deliberate. I habitually monitor my responses closely and rethink everything from every perspective. It is exhausting. I have given up many restorative, creative pursuits because there is so much work to be done, but I am constantly pushing for some balance. Taking care of myself is in constant tension with the unrelenting work left to be done to protect children and youth like Aaron, to try to assure that their families have more options than we did. Raising a child in Texas with mental illness still sucks.

Next blog we’ll talk about strategies to cope with trauma.

Death of My Child

Somehow I thought I’d be more ready 

Decades of dread would have prepared me? 

I knew when they appeared at the door, 

You were gone. 

My warrior poet son, dancing on the edge of his sword, 

You slipped and fell. 

My sweet loyal son, voice of the streets 

Insisting that we listen to your hard truth. 

Warrior loyal to decay 

The ground on which you stood has washed away, 

A meteor bursting through our lives 

     Flying through the night sky 

You flew too close to the sun 

Fly, fall, fly, fall … 

Suddenly you exist at every age all at once 

Chubby infant to tow headed toddler  

Awkward youth to tormented adolescent 

Your adulthood sequenced through the progression 

   of ink filling in your face 

and the shade dropping over your eyes 

Fly, fall, fly, fall … 

I pour through the artifacts of your years 

I mourn your potential and celebrate through tears  

that which once frustrated  

   stubborn loud, too animated  

   now you are too quiet sweet boy     

I yearn to have held you tighter to this place 

Just once more to kiss your face 

Claudette A Fette