Confessions of a Post-traumatic Stress Disorder Advocate

child on bench

I am an advocate for children with post-traumatic stress disorder (PTSD). I didn’t seek the job. I didn’t even know it existed until our twenty-six-year-old son was diagnosed with PTSD one week and successfully treated for it the next.

The adventure began the Monday after Thanksgiving in 2008 when our son Allen called. “Mom,” he asked, “will you and Dad help me figure out what’s wrong with me? I can’t go on like this.”

Heart Ache

We’d been waiting for our son’s request for almost a decade, ever since he entered adolescence. Our hearts ached as our son seemed to become two different kids. Sometimes he was the curious, talented, happy son he’d been in earlier years. But at other times was secretive, self-destructive teenager.

Because he remained highly successful in school, counselors, teachers, and therapists brushed aside our concerns. Until he ran away for a few days after his junior year of high school. From then on, they didn’t know what to say and neither did we. Even Allen couldn’t explain his reasons.

When we asked him why, he shrugged and said, “I’m eighteen. I can go where I want.” That incident marked the beginning of a pattern of running away that continued sporadically during the next eight years.

Suspicion

During those years, my husband and I noted the similarities in his behavior to the behaviors of teens that had experienced physical or sexual abuse. We were quite certain he hadn’t been the victim of those kinds of abuse, and Allen reassured us of the fact.

But what about the life-saving surgery our baby endured when he was twelve hours old? What about the three weeks in neonatal intensive care (NICU)? What about the next six surgeries and the hundreds of medical tests and procedures he experienced by age five? Had our little boy perceived all those needle sticks and surgeries and x-rays as abuse?

Gradually, the conviction grew that our young adult son’s erratic behavior was related to the medical treatment he received as an infant and very young child. But by the time we understood the cause of his behaviors, he had entered a monastic community.

At first, the highly-structured environment seemed to be exactly what he needed. His behavior stabilized. He became more compassionate and caring, more appreciative of his family, more like the Allen he’d been at his best. Until the urge to run resurfaced, and the pattern of running resumed. He unsuccessfully fought the urge for a year. Finally, on the Monday after Thanksgiving he called to ask for help.

Confirmation

His request unleashed a whirlwind of activity. Within a day we located a cutting edge, outpatient clinic in Morgantown, West Virginia, only three hours from where Allen lived. In the next few days, a therapist assessed and diagnosed his PTSD. Because of the unusual circumstances involved in his case, the clinic arranged to begin his week-long treatment the following Monday.

I picked him up after his fourth day of treatment on the following Thursday. He turned to me and said, “For the first time in my life, I’m not looking over my shoulder waiting for them to take me to surgery again.” The next afternoon, I joined him and the therapists for the final treatment session. At the end of the session, Allen smiled and said, “Mom, let’s go home.”

Transformation

From that day on, Allen never looked back. He was emotionally fragile for the first few months after treatment. But he followed the self-therapy prescribed by his clinicians and learned to manage the vestiges of his PTSD. Today, he holds a good job and is a valued employee. He’s continuing his education. He’s married. He and his wife are expecting their first child soon.

Allen’s treatment changed me, too. I had watched our child endure frequent necessary and painful medical interventions. I had watched him suffer from the devastating effects of undiagnosed PTSD for twenty-six long years. Then I watched trained clinicians relieve his mental anguish in one week.

Determination

Out of those experiences grew a desire to advocate on behalf of families dealing with childhood PTSD, whether it was caused invasive medical procedure, abuse, natural disasters, death, divorce, or other traumas. Whenever the opportunity arises, I share our story along with information about PTSD.

Here at Friendship Circle, I’ll blog about the causes and symptoms of PTSD in kids, along with research, therapies, treatments, and preventative measures for the next few months.

Children shouldn’t have to live with undiagnosed, untreated PTSD. But they will unless their parents and other caring adults know about the disorder and help them find the treatment they need. That’s why I advocate on behalf of kids with PTSD.

Will you join me?

For more information about PTSD in children visit the National Child Traumatic Stress Network (NCTSN) at www.nctsnet.org. To learn about the clinic where our son was treated, visit www.traumatherapy.us.

Jolene

Written on 2012/04/19 by:

Jolene

Jolene Philo's first child, Allen, was born with a life-threatening birth defect that required 7 surgeries from birth to age five. She taught students with special needs in a variety of settings during her 25 years in education. Her book, Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs was released by DHP in November of 2011. She also blogs about special needs at www.DifferentDream.com.
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