Music, mourning, and family narrative

(I wrote this post before we learned of the complex family and historical background of the alleged Boston Marathon bombers. I was again going to postpone publishing it. But I wonder if these ideas of mourning and family narrative have something to add as we struggle to make sense of the events of the past week. There seems to have been a tragic and deadly coming together of what French psychoanalysts Francoise Davoine and Jean-Max Gaudelliere, in their book History Beyond Trauma, refer to as "big history" reverberating in individual family history. It is hard to say any more when at this time we really know so little. Rather than making any further explicit connection, I will simply share my post below. It offers what I think can be a message of hope.)

I have been meaning for some time to write a blog post about Dar Williams'  beautiful and profound song "After All." A chance meeting with Marshal Duke, the lead researcher referenced in a recent New York Times article, The Family Stories that Bind Us, provided the inspiration.

Duke's research along with that of Robyn Fivush, has shown a clear correlation between a child's knowledge of family narrative and such qualities as resilience and positive self esteem. In a 2008 paper they describe the "intergenerational self." They write:

It is this intergenerational self and the strength and guidance that seem to derive from it that are associated with increased resilience, better adjustment, and improved chances of good clinical outcomes.

William's song, both the lyrics and the music, provides solid evidence for this theory. In it she describes her struggles with pain and sadness, and her journey to find a way to embrace life.  The lyrics speak to the importance of family narrative. 

And if I was to sleep

I knew my family had more truth to tell

And so I traveled down a whispering well

To know myself through them

The historical nature of this narrative is clear in these lyrics.

Sometimes the truth is like a second chance

I am the daughter of a great romance

And they are the children of the war

For the full impact of the song, I hope that readers will listen to it. For in my view, it is not simply the telling of the story that is important. In order for parents to pass the family narrative on to their children in a way that is meaningful and useful, the feelings associated with the story, which often includes trauma, loss, and grief, must also have found a way to be expressed. This is easier said than done. It involves having a safe, containing, holding environment in which the stories can be understood.  A secure, trusting relationship with someone who can hear the story is important.  Art, including music and literature, can have a role to play as well. Those feelings are certainly present in Williams' music. In her introduction to this live version, she expresses surprise to have discovered a large community of people who could relate to her experience.

Go ahead push your luck

Find out how much love the world can hold

Once upon a time I had control and reined my soul in tight

Well the whole truth

Is like the story of a wave unfurled

But I held the evil of the world

So I stopped the tide

Froze it up from inside

And it felt like

A winter machine that you go through and then

You catch your breath and winter starts again

And everyone else is spring bound

But when I chose to live

There was no joy it's just a line I crossed

It wasn't worth the pain my death would cost

So I was not lost or found

And if I was to sleep

I knew my family had more truth to tell

And so I traveled down a whispering well

To know myself through them

Growing up my mom had a room full of books

And hid away in there

Her father raging down a spiral stair

Till he found someone most days his son

And sometimes I think my father, too, is a refugee

I know they tried to keep their pain from me

They could not see what it was for

But now I'm sleeping fine

Sometimes the truth is like a second chance

I am the daughter of a great romance

And they are the children of the war

Well the sun rose

With so many colors it nearly broke my heart

It worked me over like a work of art

And I was a part of all that

So go ahead push your luck

Say what it is you gotta say to me

We will push on into that mystery

And it will push right back

And there are worse things than that

'cause for every price and every penance that I could think of

It's better to have fallen in love

Than never to have fallen at all

'cause when you live in a world

Well it gets in to who you thought you'd be

And now I laugh at how the world changed me

I think life chose me

After all

Mourning and music: a song for Boston

I had been working on a post on the subject of mourning and music. But with the trauma of the Boston Marathon bombing still so fresh, it did not seem appropriate to write about any other subject. I wondered, what could I add to the discussion? Then this morning, with the idea of music as a means to connect with feelings on my mind,  I heard on the radio the song Learn Me Right by Mumford and Sons. The lyrics, specifically the chorus (not the verses), are perfectly fitting to the moment, though the "scream" with hope will be one of joy,  not terror. And the music, particularly the version performed by Birdy for the movie Brave, captures the spirit of resilience. It can represent hope for the triumph of the people of Boston and of the Marathon itself. It may not be everyone's cup of tea, but for me, and perhaps for others, the music can help connect with the feelings of the day.

We will run and scream
You will dance with me
We’ll fulfill our dreams and we’ll be free
We will be who we are
And they’ll heal our scars
Sadness will be far away

Lost child psych beds at Cambridge Health Alliance: now prevention is essential

In the wake of the Newtown tragedy, many people, myself included, wrote about the need to address both gun control and mental health care. So it was rather jarring, on the same day that Connecticut's governor signed comprehensive new gun control legislation, to read that Cambridge Health Alliance was planning to cut 11 of 27 child inpatient psychiatry beds, including all inpatient service for children age 3-7.

But on closer consideration, I wonder if this loss in fact presents an opportunity. With no inpatient care for young children, it now behooves us as a society to make sure they never need such care. As a pediatrician with 25 years experience working with troubled children, I can be sure that when a child needs hospitalization at age 4, 5 or 6, his problems started way before that. The Globe article suggests that plans are headed in this direction.

Burke [chief of psychiatry] said the hospital is focusing more on efforts that can keep children out of the hospital, including services in schools and placing psychiatrists in pediatricians’ offices.

This is an excellent idea. But what does it look like in practice? Number one, we need a workforce experienced in early child development. There is an explosion of knowledge and research, coming out of the discipline known as infant mental health, that informs us of how to work with parents and children together to help set young children on a path of healthy development.

Such training programs are erupting all over the country. One superb program is right here in Boston- the UMass Infant-Parent Mental Health Post-Graduate Certificate Program under the direction of renowned researcher Ed Tronick.

Fellows in that program learn from leaders in the field, including child psychiatrist Bruce Perry, whose neurosequential model of therapeutics informs us of how to use knowledge of neurodevelopment to guide treatment.

We need these programs because most child psychiatrists have minimal to no education in early child development, and pediatricians, who live and breathe child development and have long-term relationships with families, are under pressure to see 6 patients an hour, and so have no time to help. In the ideal world, training in infant mental health would also be incorporated in to pediatric and child psychiatry training.

We cannot let the bottom fall out for these children. By taking away these beds, a preventive model is no longer optional. A person trained in early childhood mental health should be in every primary care office, and every childcare center should have easy access to early childhood mental health care professional for on-site consultation. I wonder if this might even cost less than maintaining inpatient beds.

Of course this does not help the children today who need inpatient care. Ideally we would be able to offer both forms of help. Perry's model is relevant for treatment of older children as well. I do not know the answer to this problem. However, I can be sure that parents, who are suffering terribly waiting with their severely troubled young child for an inpatient bed to become available, would have much preferred to get meaningful help years before.

What is children's mental health care?

 Patricia Wen's front page story Children's Access to Mental Health Care is Growing, in which she describes the "co-location" of mental health care services in pediatric practices, brought me back to the summer of 2011 when I attended a meeting of a working group of the Massachusetts Chapter of the American Academy of 
Pediatrics (MCAAP.) The task of this working group, a subgroup of the MCAAP task force on mental health care in pediatrics, was to address the need for collaboration between pediatricians and mental health professionals in caring for children. At the meeting individuals described different models.



One pediatrician, a man who has been in practice for over 30 years in a large group with 15 pediatricians and 10 nurse practitioners, was invited to present his model, held up as an example of an innovative and workable model. This is what he said. 



First, clinicians went in groups of 4 to attend conferences run by a prominent MGH child psychiatrist. Then another child psychiatrist started bi-weekly phone consultation with the group as a whole. 



Now, this pediatrician said with pride, the clinicians in his practice are comfortable " treating 80% of ADHD, anxiety and depression." They were hiring a social worker, whose job it would be not to do therapy, but rather to "make sure patients are taking their medications and refilling prescriptions." 



In other words, mental health care, at least for this doctor and his large group, is equivalent to prescribing psychiatric medication.



This practice is paid by Blue Cross Blue Shield under the model of AQC(alternative quality care) global budget. If the practice overspends they pay the insurance company and if they underspend they split the profit. In addition, if they practice "quality care" as defined by the insurance company, they receive more money. One measure of quality is follow up every four month for ADHD and compliance with psychiatric medication.



Another pediatrician offered an alternative model of collaborative care. She described a close personal relationship with a psychologist, who was also at the meeting. She described how, through confidential voicemail and email, they spoke frequently about their most challenging patients, working closely to provide care, and in doing so keeping a number of patients out of the hospital.



 In a sense the people who presented these two models were speaking completely different languages, one in which mental health care equals medication and another in which mental health care equals providing a "holding environment" through relationships. Unfortunately the second model is at risk of being overpowered, under the influence of the pharmaceutical and health insurance industries, by the first model. 

Our best hope for fighting this trend, I believe, lies in maintaining a focus on prevention- on promotion of healthy social-emotional development in early childhood through relationship-based interventions. 

In the Early Childhood Social Emotional Health Program at Newton-Wellesley Hospital I collaborate closely with pediatricians who refer infants, toddlers and preschoolers. I work with children with a range of issues including, but not limited to colic, sleep problems, separation anxiety and explosive behavior. I work with parents and child together. Another program, Project Climb at Colorado Children's Hospital, described in the article  Providing Perinatal Mental Health Care in Pediatric Primary Care integrates infant mental health services in to primary care.

This is a role that primary care clinicians can and should embrace. In a previous post I wrote about a proposed model of including a professional who is experienced with working with parents and infants together in every primary care practice. This person could work with parent-infant pairs when parents are struggling with postpartum depression or anxiety, and/or an infant is fussy/colicky, or in other ways "dysregulated."   

 Research at the interface of developmental psychology, neuroscience and genetics offers extensive evidence that supporting early parent-child relationships is an essential part of promoting healthy  emotional development.

This important aspect of children's mental health care was not mentioned in Wen's article. Instead, the focus was on treatment of "ADHD" and other DSM diagnoses in collaboration with MCPAP- the Massachusetts Child Psychiatry Access Project- whose role Wen describes: 

The Massachusetts Child Psychiatry Access Project provides a hotline for pediatricians to call for consultations with psychiatrists, especially for help with the complexities of prescribing psychotropic drugs. 

The co-location model described in Wen's article is an excellent one. Pediatricians have relationships with children and families that are invaluable. They are important collaborators with mental health professionals.  Parents and young children can be found frequently in a primary care office.  However, any conversation about "co-location" of children's mental health care is lopsided and incomplete without a discussion of preventive care focused on infancy and early childhood. 

  

Ode to joy: moments of parent-child connection

A friend and colleague recently asked if I thought joy was an emotion or a state. Without pause, I responded that it was a way of being fully present.

Early the next morning I was at Starbucks writing to another colleague about a case from my pediatrics practice for a book we are writing about parenting. I was describing a scene with a mother and 4-month-old son.  He had been a very challenging newborn who cried all the time, and she had struggled with postpartum depression. In my office they gazed adoringly at each other with huge smiles of delight.  I wrote, "There was pure joy in their relationship."

I glanced up from my writing to see yet another scene. A father was calmly telling his two-year-old daughter that she needed to hold his hand when they crossed the street. He was negotiating his coffee and her juice while she repeatedly wriggled away. "I can carry you or you can hold my hand, " he said. No go. She reached out to him for an instant, but again dodged his reaching hand. "Big girls hold hands crossing the street." It seemed this would work as she again reached out, but again changed her mind. Then somehow very gracefully he switched his beverages and offered his other hand. "Do you want to hold this one?" This was the magic needed. It seemed as if she had to have some say before she would temporarily relinquish her growing independence.  I watched this big tall daddy and his little girl walk across the street hand-in-hand. Another moment of joy, both for them and for me.

Interestingly, the day before another colleague had invited me to speak at a conference for early childhood professionals about the "magic of the moment" in our work supporting early parent-child relationships.

The dictionary definition of joy actually describes it as either an emotion or a state. But for me the word captures not only a state, but a state of connection, with another person, with nature, or, to quote a famous book title, "Life, the Universe and Everything."

All of these experiences served as a reminder to keep the focus, in my work with families and young children, and in my life in general, on striving for these moments of joy, of meaningful connection. These tiny moments all strung together lead to, borrowing two other words from the title of that upcoming conference, resilience and peace. 

Connecting the dots to discover the cause of "ADHD"

A reader of my previous post asked how I "connect the dots" from supporting newborns and parents to "ADHD" treatment. He states that, "trying to figure out the cause will not help any kid today." This comment motivated me to clarify what I mean by cause, as I think finding out the cause will help every kid today.

What I mean by "finding out the cause" is to give parents the space and time to tell their story, to make sense of their child's symptoms.  The aim is not to determine if the child has enough symptoms to meet diagnositic criteria for a DSM defined disorder, but rather to support  parents' efforts to find a coherent narrative. It involves starting with at least 1-2 full hour visits with both parents.  I put "ADHD" in quotes because by giving the symptoms a name, as in "ADHD evaluation" we narrow our thinking before we even start. Ideally we listen to the family's story with an open minded curiosity.

The story often starts with a fussy or colicky baby. Even before this, there may have been stress in pregnancy which is known to be associated with advanced motor development and behavioral dysregulation in the newborn. Postpartum depression and/or anxiety may have been present. Supporting a dysregulated baby is particularly challenging when a parent is affected by depression and/or anxiety. These babies often continue to have symptoms of dysregulation into the toddler and preschool years, with frequent tantrums, "not listening" or "explosive behavior." There is often a strong family history of "ADHD," substance abuse or other mental illnesses. This history is closely linked with current relationships. For example, if one parent has "ADHD," the child's behavior may be especially dysregulating for that parent. One parent who does not have "ADHD" may blame the other parent, resulting in marital discord. The child may have significant sensory processing challenges. The child may be developmentally immature and the youngest in a structured preschool program. Sleep disurbance on the part of both parent and child has a significant role to play in development of symptoms.  There are as many variations to this narrative as there are families. Clinicians also need to be attentive to the fact that child maltreatment is a rare cause of "ADHD"  that we do not want to miss, and must be considered.

 Once parents have the opportunity to make sense of their child's symptoms,  "what to do" follows naturally. Medication may, in a few cases, be indicated, particularly if a child's self esteem is suffering due to academic demands. But more often than not, the "what to do" is elsewhere. For example, a parent may need to do his own therapy to address troubled past relationships. A parent may take up yoga to manage the dysregulation her child's symptoms precipitate, so that she can remain calm in the face of his difficulties. Sleep disruptions are often part of the story and must be addressed. Marital counselling may be necessary. A good occupational therapist, who helps the family to manage the child's unique challenges in the context of relationships, can be invaluable.

Time, space and a nonjudgmental listener are essential first step in evaluation of any child with behavioral symptoms. The "why" must come before the "what." Then the "what to do"will follow naturally.

Evidence mounts that our current approach to "ADHD" is way off base

An NIH funded study published last week in the Lancet revealed that five major mental health disorders- ADHD, autism, bipolar disorder, depression and schizophrenia- share genetic roots. The authors state that their findings blur diagnostic categories. They write:

These results provide evidence relevant to the goal of moving beyond descriptive syndromes in psychiatry, and towards a nosology informed by disease cause.

Epigenetics, or the environmental influence on gene expression, must immediately be brought in to any discussion of these important findings. "Cause" is related to a complex interplay between genetic risk and environmental effects.

Another study on ADHD published this week points to the problems inherent using this oversimplified diagnostic category. The study, published in Pediatrics, showed that not only do symptoms of ADHD persist into adulthood in 30% of cases, but there is also a significant amount of "co-morbidity," including these alarming statistics:

The study also found the risk for suicide was nearly five times higher among those diagnosed with ADHD than in the comparison group, and nearly 3% of study participants were in jail when recruited for the adult portion of the study.

A review of the study published in USA today includes this telling line:

Symptoms[of ADHD] can be controlled by a combination of behavioral therapy and medication. 

Maybe the reason that so many people have such poor outcomes is that we are neglecting to understand the underlying cause of the problem and instead simply labeling and "managing" symptoms. These dismal long-term results, along with the similarly dismal results reported in the preschool ADHD study showing that 90 percent of children had signficant symptoms at 6 year follow up, state loud and clear that the way we approach what we are now calling "ADHD"  is not working. We need to do something dramatically different from the current standard of care.

What we are calling "ADHD" is a constellation of symptoms that represent problems with regulation of attention, behavior, and emotion. The term itself gives the illusion that we know the specific biological mechanism in the way that we know how lack of insulin causes diabetes. This is however, far from true.

As the first study I refer to indicates, we are just beginning to learn about the underlying biology of mental illness, and those findings suggest that "ADHD" may be an artificial construct.

My clinical experience tells me that these genes they have described may be functionally related to sensory processing.  Problems with sensory processing seem to be common to many diagnostic categories for mental illness that we currently use. However, children develop the capacity for self-regulation in the context of relationships. Identifying the problematic gene is only part of the answer. Understanding and addressing the environmental risk is the other.

If we consider the interplay of genetics and environment, then a third study published last week, this one also in Pediatrics, will point us in the direction of meaningful preventive intervention. This study identified the problem of postpartum anxiety, concluding that:

Postpartum state anxiety is a common, acute phenomenon during the maternity hospitalization that is associated with increased maternal health care utilization after discharge and reduced breastfeeding duration. 

Given what we already know about the risk of psychiatric disorders in children of parents struggling with depression,  these findings only increase the urgency of focusing our resources on supporting parent-infant pairs. We need to help set development in a healthy direction from the start.  Genetic vulnerabilities are present at birth, and if we devote maximum resources to supporting the environment, then we may significantly decrease the risk of those vulnerabilities manifesting as psychiatric illness.