A happy story in stressful times

It was quiet on the mountain. My husband and I were on an early morning hike with our dog up Monument Mountain. As we approached Inscription Rock, a landmark near the top, we saw a man and woman who looked to be in their late 60's, healthy outdoorsy types. The man was asking the woman to sit on the rock so he could take her picture.

As we passed by, the man walked towards me and asked me to take their picture. "Sure," I replied, taking his camera. Then, as the woman got settled on the rock, he whispered to me, "I'm about to ask this woman to marry me." Signaling to my husband to stay back with the dog, I began clicking away. He approached her and got down on one knee, pulling a small box out of his jacket pocket. There was much laughter and embracing. When the deed was done, they turned to face me, arms around each other, and asked me to take their picture together.

"It was meant to be," I said, referring both to our arrival at this spot at the exact moment of the proposal, as well as, I hope, their marriage. My husband and I continued over the top of the mountain and down the other side, exhillarated by this chance encounter with new love.

( Between the elections, hurricane Sandy and my preparations for two major presentations in the next two weeks-more about those soon- a relevant and meaningful blog post has not been forthcoming. I hope readers enjoy this little tale instead!)

Preventive mental health care for children falls through the cracks

The current issue of the Journal of the American Academy of Child and Adolescent Psychiatry has an excellent article, Integrating Mental Health Care Into Pediatric Primary Care Settings, identifying the causes of this problem.

Pediatric training provides limited experience in screening or intervening for mental disorders. In contrast, child psychiatry training emphasizes the treatment of children with established psychiatric diagnoses and typically offers limited experience with children at risk for mental disorders or children whose symptoms do not reach the threshold for diagnosis. 

In other words, the current structure of the health care system does not have room for prevention. Primary care clinicians, who have the main contact with young children and families, do not have adequate education in prevention, and specialists who children are referred to when problems arise only know how to treat identified "disorders." The article further elaborates on the reasons for this situation:

Current financing structures reward treating established diagnoses, not providing preventive services, because payment for visits, with few exceptions, requires a DSM-IV diagnosis.

This problem is currently being addressed in the refinement of the DC: 0-3, a classification of disorders of infancy and early childhood that recognizes the significant role of relationships in problems in this age group. If the DC:0-3 is "cross-walked" with a DSM diagnosis, then reimbursement is possible.  That word "disorder" is still part of the conversation, but it is a step in the right direction.

Another problem intrinsic to the system is that for billing purposes the child is the identified patient, making work with the family challenging.

Research on the treatment of child mental health conditions has strongly indicated the benefit of treating the child and the caregiver as “the patient,” but public and private plans frequently do not pay for family-focused treatment... the need to identify the child as the patient makes family-focused interventions difficult to support financially; likewise, payment for caregiver-only or collateral sessions is lacking.

Another problem identified is the lack of financial support for collaborative care. In my work with families in the Early Childhood Social Emotional Health program at Newton Wellesley Hospital I speak regularly with a child's primary care doctor. This is an essential part of care, as that person often has a longstanding ongoing relationship with the child and family and knows them well. In addition, if I refer a family on to more specialized care, such as with a psychiatrist, it is important that I fill them in on the work I have been doing with the family. Working as a team we can hold the family through a difficult time, and get development going in a healthy direction. I spend a lot of time on the phone because it is good care, and I know that many of my pediatrician and child psychiatry colleagues do the same. Yet none of this care is reimbursed.

The article offers this ray of hope:

The Affordable Care Act (Public Law 111-148) requires mental and behavioral health coverage in an essential benefit package at parity with medical benefits. This could incentivize the integration of care.

Of course for this to happen, President Obama must be reelected.

Yoga for autism, movement for learning

When I listen to parents of young children (under 5) in my behavioral pediatrics practice, they often describe a child who is very overwhelmed by sensory input, inflexible and easily dysregulated. They worry that their child is "on the spectrum." We talk about how their child does not feel calm in his body, and work together to help him find ways to feel calm. With this approach, there can be significant improvement in behavior.

Thus I was pleased, though not surprised, to learn of two studies validating this approach in children who have been diagnosed with autism. One, published in the current issue of the American Journal of Occupational Therapy, demonstrated that a 17 minute yoga program, called "Get Ready to Learn," significantly decreased anxiety, social withdrawal and aggression.

The second, published last year in The Journal of Alternative and Complementary Medicine demonstrated significant improvement in core features of autism in a group of children age 3-16 who participated in an 8 week multimodal yoga, dance and music therapy program.

In a related story, this morning on NPR's Only a Game, a program entitled Does Exercise Help Kids Learn? referred to the research of neurologist Majid Fotuhi showing that exercise improves learning efficiency. He stated:

I am also in favor of shorter teaching sessions which are intermittent with 20 minutes of P.E. or some kind of physical activity that’s somewhat structured.

In a previous post I refer to psychiatrist Bruce Perry, whose neurosequential model of therapeutics, primarily applied to work with traumatized children, uses self regulating activities interspersed between both learning and therapy. I conclude:

Often when kids are struggling in school, teachers express concern that they are "over-scheduled." But if extracurricular activities are carefully planned and well thought out, they can be considered an essential part of treatment. It is best to have some kind of a calming activity interspersed with homework, tutoring or therapy. These can be tailored to a child's particular talents and interests.

Whether a child has symptoms associated with autism, has experienced trauma, or is struggling to learn, promoting self-regulation by using the body to help the brain is important. If we can incorporate this approach into treatment and education of young children, we will support healthy development of regulation of emotion, attention and behavior,  perhaps even avoiding the need to label them with a disorder.

New study asks; what happens to the dysregulated infant?

When I see children in my behavioral pediatrics practice, whether they are 2, 5 or 15 it is very common to hear from parents that as a baby their child "cried all the time" never slept" had "terrible feeding problems" or some variation of this. Therefore I was not surprised by the findings of a large longitudinal study published this week in Pediatrics: Long-term Outcomes of  Infant Behavioral Dysregulation. The researchers in Australia had information about over 5000 babies starting at 6 months, and found that when mother's reported symptoms of "dysregulation" at this age, they were significantly more likely to report of behavior problems at age 5 and age 14. This association was affected by such things as mother's level of education, marital status and presence of anxiety and/or depression. The authors conclude that:

By facilitating early referral to appropriate professionals, such as public health nurses, family therapists, psychologists, and social workers, clinicians may aim to improve not only behavioral out- comes in childhood and adolescence, but also parents’ perceptions of their children and the needs of the parents themselves.

While I am pleased that this conclusion is reached in a prestigious journal, what is lacking in this study, is understanding of how infant dysregulation and later behavior problems are linked, and so in how to treat these problems. Here are three points that speak to this issue.

1) This model places the "dysregulation" squarely in the baby. However, any new mother (I refer to mothers because that is what the study does- see below for thoughts about fathers) will tell you that the baby's behavior has a huge influence on a mother's behavior and emotional wellbeing.  The mother and baby regulate and dysregulate each other. For example, if a baby has difficulty settling to sleep, a parent will likely be severely sleep deprived. This in turn may affect her ability to respond to her baby's cues. If she is struggling with postpartum depression, the sleep deprivation likely will worsen her symptoms. When a mother is herself struggling in this way, it may lead to further symptoms of "dysregulation" in the baby. But conversely, if a baby is dysregulated and the mother gets help,  in the form of such things as a mother-baby group, yoga and/or therapy, and she is able to be calmer, she will be better able to help her baby manage his symptoms of dysregulation. In turn, as her baby becomes more calm, she will feel more competent and better about herself as a parent.

2) Fathers have a critical role to play. A study published last year in Pediatrics showed a significant link between paternal depressive symptoms and later child behavior problems. Again, looking at the positive side of this, when a father's emotional wellbeing is supported, he can be more emotionally available for both his partner (this study does identify stability of partner relationships as well as marital status as an important factor) and his child.

3) Symptoms of dysregulation are usually present before 6 months of age. For example babies born prematurely are very likely to be behaviorally dysregulated. One particularly vulnerable population is what is referred to as the "late preterm." When babies are born at 35-37 weeks, they are often in the regular nursery and parents have an expectation that they are "normal." However, these babies may be difficult to feed, have difficulty settling to sleep as well as increased sensitivity to sensory input. When there is this kind of mismatch between the parent's expectations and experience, significant feelings of inadequacy may emerge. In turn, these feelings, together with sleep deprivation may lead to symptoms of depression in a parent. This is another example of mutual dysregulation.

I was motivated to develop the Early Childhood Social Emotional Health program at Newton Wellesley hospital exactly because of the findings that this study calls attention to. I wanted to help families before their child was 5, 10 or 16 and being diagnosed with ADHD. Recognizing that the roots of these problems are usually present very early, it made sense to  devote resources to helping families of young children.

The risk of this study however, is that "infant dysregulation" becomes the new "ADHD," placing the problem squarely in the child, and failing to recognize that the problem occurs in relationships.   As it stand now, the study adds to the rapidly growing body of literature offering evidence that devoting resources to early childhood is important. But it is only by focusing on interventions that promote healthy relationships, and for vulnerable parent-child pairs starting these interventions at or close to birth, that this research can have a positive and meaningful impact.

ADHD: biology or environment?

When I write from my clinical experience as a behavioral pediatrician, I am careful to change identifying information to protect the privacy of my patients. It is rather freeing, therefore, to write  about characters in a novel. Left Neglected by Lisa Genova, who is also a neuroscientist (perhaps she took the story from some real cases) offers some important insights into this complex subject.

The story revolves around Sarah, a 37-year-old mother of three young children, who, distracted by her cell phone on her drive to her high-powered job, crashes her car and suffers a traumatic brain injury. In the days just before the accident, she and her husband are called in to see their seven-year-old son's teacher who says, in not so many words, that they should have him evaluated for ADHD and possibly medicated. During the time that Sarah is hospitalized, he is in fact diagnosed and started on Concerta.

But there is another relevant story line. We learn that when she was a child, Sarah's 6-year-old brother accidentally drowned in a neighbor's pool. When Sarah's mother comes to take care of her in the wake of her accident, we gain further insight into the havoc this event wreaked on their relationship. Her mother is holding her hand in the hospital. She writes:

After Nate died, at first she held my hand a little tighter. I'm seven, and my hand is in hers when we cross the street, when she leads me through a crowded parking lot, when she paints my nails. Her hands are confident and safe. And then I'm eight, and my hand must be too awkward to hold along with all that grief, so she just lets go. Now I'm thirty-seven, and my hand is in hers.

Sarah acknowledges that her intense drive to succeed has been at least in part powered by this double loss of her mother and brother. In her pre-accident life she is a master multitasker who works very long hours and is rarely home for in time dinner. She clearly adores her kids and is devoted to them, but is usually answering emails while getting them ready for school.

As she and her mother work to heal their relationship, we see a new kind of calm in Sarah (part of this is necessitated by the restrictions on her life imposed by her brain injury.)  In a lovely scene where she is helping her son with his homework, she is present with him in a way that she was not in her prior frenetic lifestyle. Together they figure out that he works better standing up. If they cut out the problems, he can do them individually and not be distracted by all of the questions on the page. Both are thrilled by his success.

Jubilant pride skips along every inch of his face. It strikes me that he looks like me.

I recognize that these are fictional characters. Yet I think that an assessment, as I do with real patients I see in my practice, can offer some insight into this complex question of the interaction between biology and environment.

There is likely a genetic vulnerability for attention problems in Sarah's family. Her brother's accidental death may have in part been due to an impulsivity that can go along with these traits. Sarah herself may have some attention problems, but her behavior is also in large part fueled by the loss of her brother and her troubled relationship with her mother.

Her son may have this same genetic vulnerability, but his symptoms are also tied to his mother's intense, driven behavior. She may have difficulty being emotionally present with him, particularly as he reaches the age her brother was when he died. As Sarah's relationship with her own mother is healed, in turn she is able to be more fully emotionally present with her son.

My hope for these fictional characters is that Sarah's process of grieving and healing with her mother will in turn help to lessen her son's symptoms of inattention and distractibility, and so support his healthy development.

Grief and loss are frequently present in the family history of children who have been diagnosed with ADHD. But often, as in this story, these losses go unacknowledged for many years, sometimes for generations. They may take the form of "family secrets."

As I was working on this post, I suddenly recognized the double meaning of the book's title. Left neglect is the name given to the disability that results from Sarah's injury. But Sarah was also left neglected by her mother's grief.  Ironically it takes the first to repair the second. My hope for real families confronting similar issues to this fictional one is that they can find a way to address these unmourned losses and heal relationships without needing a devastating life event to motivate them. 

Program inspired by Daniel Pearl teaches kids to use music for peace

An extraordinary program, Music in Common (MiC), takes on particular significance in light of recent events in the Middle East, when a video that author Salman Rushdie referred to in an NPR interview as a "disgraceful, shoddy little thing," seems to be at least in part responsible for terrible violence and death. In stark contrast, MiC's mission statement reads:

By producing free, publicly accessible concerts, school programs, and multimedia productions with an interest in underserved areas and communities where there is a history of conflict, Music in Common (MiC) provides a platform for the exchange of ideas and collaborations that can lead to positive social change.

Originally called FODfest (Friends of Daniel) the organization was founded by Pearl's close friend and bandmate Todd Mack in response to Pearl's tragic death in 2002. Pearl was kidnapped while working as a journalist in Pakistan, and subsequently beheaded by his captors.

Groups of students in the MiC youth program work together with industry professionals to write, record, perform, and produce a music video of an original song, participating in all aspects of the creative and multimedia production process. Their website states:

MiC Youth Programs are free educational programs that extend the FODfest concept of community building through music to youth, serving to educate, inspire, and empower junior high and high school students.  MiC Youth Programs take place in local schools or community centers where FODfest concerts take place and provides an experiential education to students, teaching the essential life skills of team building, collaboration, and mutual respect. 

MiC international focuses on the Middle East, and has produced music videos with groups of Arab and Israeli students working together, including this one Peace*Shalom*Salaam.

I am fortunate that the organization's founder lives in my town, and has brought the program to my son's school. For the past two weeks, a group of nine high school students have worked long hours together in an intensive process to create a song and produce a music video.  I had the privilege to sit in on a group of kids discussing what they are learning. One said that in the age of the Internet, it is important to think carefully about how your message will be received by a large audience. Another reflected on the responsibility of using creativity for peace, not war.

Following the production period, there is a performance,  referred to as a "FODfest community concert." Here the song and video are debuted for an audience, and musicians swap songs and jam together onstage. The Mic brochure describes these events as:

Powerful and healing experiences generating a sense of community and hope, serving as a call to action for individuals and communities to discover common ground.

Never leave a child alone during a meltdown

A commonly held belief among parents is that one should leave a child alone, or "ignore" him, when he is having a meltdown. Yet all of the best of developmental science tell us that this approach is completely wrong.

When I work with families who are struggling with a child's out-of-control behavior, I explain that in the middle of a meltdown, a child feels completely helpless. If left alone, he will feel not only frightened, but also abandoned. I explain that at such a moment, the higher cortical centers of the brain responsible for rational thought are not functioning properly.

These types of severe meltdowns are common in children who have experience early trauma, at the time when the higher cortical centers of the brain were not yet fully developed. Stress of a seemingly minor nature can lead the rational brain to in a sense go "off-line."  The child will have access only to the lower brain centers that function more instinctively.

I recall working with the parents of a four-year-old child who had been adopted from another country. There he had lived on the street with his mentally ill mother, from whom he had been separated at one year of age and placed in an orphanage. His adoptive parents where both horrified and overwhelmed by what they interpreted as "anger." He would scream at them,  spit at them, kick and hit them. Not only would they get angry in return, interpreting his behavior as "defiant," but they would send him to his room, saying, "I'll be back when you can calm down and behave nicely."

When I explained that during a meltdown he was developmentally more like a newborn than a four- year-old, their approach to him completely changed. Rather than react in anger, they would ask calmly, "Do you need a hug?" Or they would try to hold him. If he were too out-of-control to allow physical contact, they would take him to a place where he was physically safe, and speak to him reassuringly until he began to calm down. Not only did the tantrums subside, but his parents began to learn to recognize when he was about to descend into what they now understood as a lower center of brain function. They would try to engage him when the thinking part of his brain was still working.

Similar mechanisms are at play in a child who has not had this kind of severe trauma. Frequent meltdowns are common in the setting of sensory processing problems and developmental problems such as speech and language delay (as apparently was the case for Rose, the child described the New York Times piece.) When a child is repeatedly abandoned both physically and emotionally in the middle of a meltdown, that experience in itself may be traumatic. In such a situation frequency and intensity of meltdowns often worsens.

Parents often feel that holding a child in this way is counter intuitive. "Won't I teach him that he can get whatever he wants? " they often ask. But the opposite is true. When a child feels held and understood, with time he learns to manage these difficult moments on his own. 

Discipline, both in the home and in the school setting, should be founded in contemporary developmental science. This science tells us that when we aim to see the world through the child's eyes, and approach his behavior from a stance of empathy and understanding, he learns to regulate emotions, think clearly, and manage himself in a complex social environment.