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You know it when you see it

hands2When my son was 9, we had our first in home therapist.  This was a brand spanking new idea at the time so we could– and did — invent the service as we went along.  My son had had 6 hospitalizations, tried 20-something combinations of medications and gone to countless outpatient visits at that point.  Some of these treatments were quite successful — for a while.  Some were pretty ineffective.  But it was all the system had to offer and all my insurance would pay for.  I used to grumble that our choices were inpatient, outpatient and see-you-later-alligator.

Then we were offered this new thing — someone who would come to my house and work with all of us — my son, me and his brother.  What a concept.

Ian was a social worker cast from a different mold.  He talked about his own experiences when it seemed important or to build common ground.  He suggested new approaches and things to try based on his observations and sometimes, his best guess.  He listened to my ideas (herbal supplements, meditation, wild ideas) and helped me implement them. He didn’t insult me by suggesting star charts or baffle me with gobbledegook.  Instead, he partnered.  He shared, he asked and he listened.  He was respectful and interested.  He wasn’t afraid to admit to bad ideas and applaud the ones that worked.  He was eager to hear about resources I found and learn about strategies that were new to him.

In short, he really and truly partnered.  He wasn’t the leader and me the sidekick.  He wasn’t the expert (though his expertise was wonderful) and me the learner.  It was clear from the start that we were doing this together.

Several years ago, when we talked about partnering with families, we focused on defining what the family member would need to be a good partner.  We worked to ensure that their voices were heard and their participation was supported.  The word was out: families were welcomed, accommodated, included and recruited.  We changed the environment and the team composition. But here’s the catch.  Parents have always come to the table–whether it’s the treatment, IEP or policy table–and they always worry they might feel blamed or mistrusted or seen as unsuccessful (what parent has not been unsuccessful?).   Being included is not being asked to partner.  In order to partner, a parent has to feel they have a meaningful voice, not just  a role. Parents can’t make that happen by themselves.

What hasn’t been done so well is define what the professional, the provider, the state agency person (or whoever it is) looks like when they partner.  Some, like Ian, know how to do it and do it right.  For others, it’s not easy or intuitive.

There are a lot of ways to define partnering and to measure it.  One of the best lists I’ve seen is from Brian O’Neill at the National Park Service. In his 21 Partnership Success Factors he notes that partnership needs to be a way of thinking that includes trust, leaving your ego at the door and respecting the right to disagree.

We talk about systems partners and family partners.  We discuss parents partnering in primary care, behavioral health and education.  But while the frameworks have grown and the opportunities are there, we have a long way to go.

A lot of partnering comes from a head space, a thinking space; somewhere made of definitions and verbal structures.  But it’s not something we experience from the outside looking in.  It comes from trust and from hope and from belief.  Trust in one another and trust in the path forward.  Hope that we can accomplish something, maybe even something small that will amaze us, and fortify us and validate us.  And belief that even in a broken system and the experience of many failures that there is a near future and a far future that is better than right now.

Once you’ve been a full partner, nothing less will do.  And to be fair, it’s a more demanding role for parents too.  We have to do the work we’ve committed to even when we are tired, listen with the same respect and interest that we want in return and often stretch beyond what we thought we knew.  When we look around the table to see that parents are participants and stakeholders, we need to up our game and expect that meaningful partnerships will be the norm for all of us.

Bipolar no more?

The new DSM 5, the bible for psychiatric disorders, intends to do away with a bipolar diagnosis for many children and teens.  A new diagnostic category, temper dysregulation disorder (TDD) is being proposed and would include symptoms of bipolar disorder.  The new diagnosis of TDD (does this really denote a serious medical condition?) will surprise and dismay many parents.  Families usually struggle for years with their child’s unpredictable behavior, intense moods and volcanic temper tantrums while strangers, friends and family assume that what is wrong is inadequate parenting.   A bipolar diagnosis has helped many parents get treatment, school services and a recognition that what they are dealing with at home is serious stuff indeed.

The DSM is many things to many people.  Mental health clinicians rely on it to help form an accurate diagnosis.  Insurers use it to authorize payment for medically necessary treatment.  Schools often cite diagnoses in the student’s education plan.  Even juvenile courts use it to better understand the behaviors that might bring a youth into court. 

The DSM 5 Child and Adolescent Disorders Workgroup has listed several reasons for the recommended change.  The rise in prescribing psychotropic medications for children is one.  The group also cites a study that “found a 40-fold increase between 1994 and 2003 in the number of outpatient pediatric psychiatry visits associated with the diagnosis of BD [bipolar disorder].”   Yet, a 2007 study found that youth released from the hospital with a primary diagnosis of bipolar amounted to less than one in a thousand.

But in 1994, practically no children were diagnosed with bipolar disorder, so any increase from “almost nothing” would be startling.  In the early 90s, I was running support groups where parents would share stories with each other about their child’s moods (from rage to extreme silliness to wanting to die), the nightmares that came almost every night, the rigid food preferences and risky behaviors.  Most parents worked, had little support and felt overwhelmed by the impact on their family.  Parents were told their children had ADHD, anti-social personalities, were oppositional or had conduct disorder.  Somehow these diagnoses didn’t capture the gravity or complexity of the situation.

The DSM is not a coding system set up for the convenience of the insurance industry or to create a shorthand for schools. Yet, a child must often be labeled “something” in order to get services.  We all give lip service to measuring the “functioning” of a child but that still doesn’t open doors or get services paid for.  The reality is that parents often have to fight for services.  We may decry the need for labels and powerful diagnoses, but at this point in time it’s what we have.  Those diagnoses have to increase access for children as well as describe their symptoms.

Most of the children and youth who now have a bipolar disorder diagnosis require medication, therapy, special education strategies and a loving, dedicated parent who is willing to do battle to obtain the needed treatments and services in order to improve things.  It’s a diagnosis that does not imply that “bad” parenting is the cause, which allows parents to be partners in creating and carrying out a treatment plan, just as they would if this were any other medical illness.   It also does not imply the child is to blame, which is often equally important.

Any new diagnosis proposed by the DSM 5 needs to send a clear signal to insurers, schools and the general public that bipolar in children is very real and very serious.  Parents already know this.  There is still time for comments at  www.dsm5.org until April 20, 2010. 

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Yes, there’s been a gap between the last post and this one.  I got a house ready to be sold, sold it and am getting ready to move.  It certainly devoured a lot of my time.  But I have been thinking about children’s mental health a great deal and the posts will keep on coming!