For 7-year-old Clare Lee*, the scent of cleaning solution, a photo in a book or words in a song can trigger flashbacks of her mistreatment at a Chinese orphanage, causing her to re-live her nightmares almost everyday.

When Nancy Hemenway of Arlington, Va., adopted Lee from an orphanage in southern China, she was not prepared for the flashbacks, sleepless nights or episodes of dissociation Lee experiences on a regular basis.

After she was abandoned as an infant, Lee spent about 16 months in a Chinese orphanage, which Hemenway says are often a mix of children, patients with mental illness and the elderly.

Uneducated caretakers, who are often former orphans themselves, staff many state-run orphanages in China. Hemenway says caretakers are taught to keep the children quiet, often by abusive means, including frightening stories, electric shock and punishment, such as shutting children in a closet or “dying room.”

Hemenway says, “It is likely [Lee] was considered a ‘bad’ baby because of the severity of her acid reflux problems, being sick and crying a lot.” Lee has physical scarring on both ankles, “likely from being tied,” Hemenway says. “She also has scars on her back, of unknown origin.”

When Hemenway visited the orphanage, she found the building "clean, but eerily silent," which suggests the use of “dying rooms,” where crying children are often left until silent. "Dying rooms" at these kinds of orphanages are more common than previously believed and Hemenway says Lee may have been shut into a closet in order to keep her quiet.

At times, Lee, who suffers from complex post-traumatic stress disorder (PTSD) “appears depressed and experiences flashbacks, episodes of dissociation, increased anxiety centered around bedtime, night terrors, crying and screaming during sleep,” Hemenway says. PTSD is diagnosed when stress reactions “are serious, continue and interfere with the daily functioning of children and adolescents,” according to the National Traumatic Stress Network (NTSN).

Because the smallest trigger – a smell, a sound or a picture in a book – can cause a flashback, Lee’s sleep patterns are disrupted; she remains terrified of the bathroom and will not bathe unless her mother is at eye level with her.

Misdiagnosis and Communication Challenges

According to Jane Koomar, PhD, OTR/L, FAOTA executive director of Occupational Therapy Associates in Watertown, Md., who just began treating Lee, pediatric PTSD is often under-diagnosed, leading to increased frustration and aggressive behaviors or trouble in school.

When working with Lee, she started by providing organizing sensory input, in order to help her feel more comfortable. Lee then “began to engage; first through extending her foot to us, and then with eye contact and lastly through beginning to vocalize. Instead of doing self-stimulation, she began to engage with us in the activity,” Koomar says.
 
Children with PTSD often exhibit more aggressive behaviors in an environment where they feel comfortable. When at home, Lee also exhibits increased obsessive-compulsive behaviors. For example, she is acutely aware of her environment and needs things to be in order including “shutting all cabinets and doors so she can feel safe before she proceeds with an activity,” Hemenway says.

According to Koomar, who worked with Lee during a three-day intensive therapy session, “as we were able to provide organizing sensory input, she continued to use the last line of a song we used during intervention as a way to signal to her mother that she needed her attention and wanted to be with her after she left the intensive [therapy session].”

Among pediatric patients with PTSD, sometimes a trigger can be isolated, such as a book or picture. However, triggers are not always immediately identifiable. Once triggered, bouts of depression and crying may last for several days after the event.

It will take hard work and several intensive therapy sessions combined with regular OT; however, Koomar says, “With consultation from the OT to her other team members on the use of sensation to help her with emotional regulation, she will continue to make steady progress.” 

Defining Child Trauma

According to the NTSN, while some children "bounce back" after adversity, traumatic experiences “can result in a significant disruption of child or adolescent development and have profound long-term consequences.”

In particular, repeated exposure to traumatic events affects the brain and nervous system, “increasing the risk of low academic performance, engagement in high-risk behaviors and difficulties in peer and family relationships,” according to the NTSN.

Because children with PTSD may exhibit behaviors at home that they keep under wraps at school, it is sometimes challenging to determine what diagnostic codes to use before implementing a therapy regime.

Because not every child with PTSD experiences obvious abuse or neglect, PTSD is often misdiagnosed as ADHD or even autism. Not wanting to use PTSD as another “catch-all” diagnosis, Koomar says, “When an individual has PTSD they often live in a high state of arousal. This means they are often in a state of flight, fright or fight or move to overload and shutdown, which can appear as hypoarousal.”

In addition, Koomar says children and adults with PTSD often have extreme sensory sensitivities, which are sometimes misdiagnosed as ADHD or sensory defensiveness. “If a child lives in this state most all of the time, often coupled by flashbacks periodically during the day and more frequently at night, they can also be seen as autistic,” Koomar says.

According to the NTSN, children and adolescents experience trauma under three different sets of circumstances, which include: witnessing a serious injury or the death of someone else, facing imminent threats of serious injury or death to themselves or others or experiencing a violation of personal physical integrity.

Twenty years of cumulative research found PTSD often results from the above experiences. These experiences may cause “overwhelming feelings of terror, horror or helplessness,” according to the NTSN. For example, acute causes of trauma can include school shootings, gang-related violence in the community, terrorist attacks, natural disasters [earthquakes, floods or hurricanes], serious accidents, sudden or violent loss of a loved one or physical or sexual assault.

In other cases, exposure to trauma can occur repeatedly over long periods of time, resulting in chronic trauma conditions. According to the NTSN, these experiences result in a range of responses, including “intense feelings of fear, loss of trust in others, decreased sense of personal safety, guilt and shame.” This can include, for example, verbal abuse, unwanted or inappropriate touching, physical abuse, long-standing sexual abuse, domestic violence, wars and other forms of political violence.

Signs and Symptoms: Living with Flashbacks

Child traumatic stress “occurs when children and adolescents are exposed to traumatic events or traumatic situations and when this exposure overwhelms their ability to cope with what they have experienced,” according to the NTSN.

Depending on their age, children respond to traumatic stress differently. According to the NTSN, many children show signs of intense distress, including, “disturbed sleep, difficulty paying attention and concentrating, anger and irritability, withdrawal, repeated and intrusive thoughts and extreme distress when confronted by anything that reminds them of their traumatic experiences.” Some children also develop related psychiatric conditions, such as depression, anxiety and behavioral disorders.

For example, Lee will often cry at night in her sleep. During bouts of crying, she “sometimes is sad, and other times angry,” Hemenway says. Crying may also accompany kicking before or after sleep. While children with PTSD may have bouts of aggression, Lee is usually not aggressive; however, she will occasionally hit or kick in response to a trauma trigger.

Koomar says flashbacks are automatic responses to a trauma trigger and are not something people with PTSD can turn off or muscle through. “Flashbacks are very powerful and it is important to realize that with PTSD flashbacks, the person is physiologically in that situation again.”

Koomar says managing flashbacks requires time and careful therapy. “This cannot, and should not, be viewed as other forms of anxiety might be,” Koomar says. “It is not at all a situation where the individual can ‘overcome it’ or ‘pull themselves up by their boot straps’ or be ‘resilient’ and just manage it. It is usually an incapacitating problem that needs a very careful and thoughtful therapeutic approach.”

Treatment: Combination Therapy and Consistency

According to the NTSN, traumatic stress can cause “increased use of health and mental health services and increased involvement with the child welfare and juvenile justice systems.” In addition, adult survivors of traumatic events may have difficulty retaining a job and establishing fulfilling relationships. However, when caught early enough, combination therapies can help people experiencing PTSD begin to recover.

Consistency is key for pediatric patients with PTSD. Flexibility within structure “and consistency are extremely important in order for a child with PTSD to feel safe,” Hemenway says. “Only when they feel safe are they able to build the necessary relationships and a foundation to enable the higher cognitive areas to develop fully and to realize their full potential.”
 
She suggests that therapists work as a team with patient’s parents by providing materials to help them understand the depth and breadth of trauma and how it affects every facet of a child’s life, from brushing their teeth to playground interactions.

Hemenway says one of the things that helped her work with Lee is the understanding of “what trauma is, what it means in a child's life, how we can structure our daughter's environment to make her feel safe and how we can promote processing memories in a safe environment.”

Hemenway strives to work closely with the therapist, which has helped them “develop trauma triggers management in her day to day life. The end result of this is that she feels safe – and not in fear of her life.” This small change has made an important difference in Lee’s life because Hemenway says it “helps her to allow us to be in control instead of feeling that her very survival depends on her being in control.”

Koomar works with Lee during intensive therapy sessions using sensory integration intervention to complement her trauma and attachment therapy. Sensory interventions help her to feel more comfortable, which allows Koomar to progress and introduce new therapy activities. She says this therapy combination is helpful to “ground and organize the child and create excellent opportunities for parent bonding.”

According to Eve A Wood, MD, clinical associate professor of medicine at the Tucson-based Arizona School of Medicine and author of 10 Steps to Take Charge of Your Emotional Life, (Hayhouse, 2007), people with PTSD often have a very hyper reactive nervous system, “so it does not take a lot to get it really out of whack.” She says small things may unsettle them and “can very easily trigger a more extreme response because there is a very highly developed activation system in patients with PTSD.”

“Consistency is really important,” says Wood. It is also important to refrain from revisiting the trauma several times in the course of therapy. She says people need support that does not involve revisiting the trauma, for example, “activities that calm the nervous system, talking a walk, going to a funny movie, playing a game or other things that enable you to connect, but are not about the trauma they experienced.”

Communicating with people experiencing PTSD is often challenging. Even with verbal patients, communication is often complicated by attached sensory processing disorders or lack of eye contact. Lee, who communicates, when cued, using one-word sentences or signs, often uses symbolic play as a medium for processing trauma.

Since Lee began trauma/attachment and sensory therapies, she has clearly articulated a few words at a time. According to Hemenway, spontaneous vocalizations are much more common when she is animated, feeling safe and secure in a moment or activity.

Since her first initial therapy session with Koomar, she has continued to use the last line of the song "Pop Goes the Weasel" as a way to communicate that she wants her mother or to soothe herself. Hemenway says, “This holding on to this particular song also started with the new therapy.” However, Lee has shown a significant increase in connection with her mother since August 2006, initiating contact and wanting to be soothed by her mother during transitions or at times of distress.
 
Practical Application

When working with a patient who exhibits PTSD symptoms, Koomar suggests therapists refer the patient to a child specialist. She also recommends that therapy professionals educate themselves about the psychology behind PTSD in order to better refer their patients. “It is important for OT, PT and speech therapists to have some training in the symptoms of PTSD so that they know to look for these issues,” she says.

PTSD and attachment disorder are often present in children who have a history of abuse and neglect. Koomar suggests reading Dan Hughes book, Building the Bonds of Attachment (Aronoson 2006), to learn about attachment issues and effective intervention.

Koomar says more research into pediatric PTSD is needed and collaborative treatment will help to generate specific questions, on which researchers will base clinical trials. She suggests therapists “explore the treatment combinations of OT with sensory integration, trauma and attachment in order to form research questions.”

While Koomar works to develop more evidence-based research, Hemenway is working to create a non-profit agency for traumatized children. She hopes society will begin to understand “how real trauma is and how it can destroy a child's life.” However, she says that families working with a child who has experienced trauma should not give up hope.

“Given the right team, healing can take place,” Hemenway says. “As Dr. Perry said in his book, The Boy Who Was Raised as a Dog, (Basic Books 2007) ‘Once you know what to look for, you can see it everywhere in the lives of children. Trauma is a force to be reckoned with, it's a social disaster sucking millions of dollars out of our society. It doesn't have to be this way. Good clinicians who understand it can help children heal. They can help parents learn to therapeutically parent their traumatized child.’”

*Subject’s name has been changed to protect her identity.

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Kate DeBevois is the staff writer for Therapy Times. Questions or comments can be directed to kdebevois@valleyforgepress.com.