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.