Wednesday, January 21, 2009

A Parent's Point of View: Mamacate's Comment

My last post before the wonder of Inauguration Day spoke of the problem of balancing the known and the unknown in dealing with childhood behavioral problems (the post with the cute "Goldilocks" title).  Many of you probably don't open the comments,  and a person named "Mamacate" left one that I thought deserved elevation to "posting status".  Here is is, to give us all a parent's perspective on this problem:

You're right, of course, but as a parent who has been struggling to get a meaningful diagnosis (not to mention meaningful help) over the past three-plus years, it's tough to be the proverbial porridge. We're still caught in the middle of the "is it or aint it" bipolar debate, and at this point I think there are maybe one or two clinicians in the state willing to make that diagnosis in a 6-year-old, at least among those from whom we should accept such a diagnosis.

I realize now, when we are in a much better place, with at least a partial diagnosis, that our ability to cope, and our unwillingness to bring our 35-pound three-year-old to the ER or to call the police, etc. because of his behaviors is a major reason we didn't get better help sooner. We were desperate, but we sought help calmly and appropriately, and we were turned away at every attempt, while care providers and teachers freaked out and called his behaviors some of the most extreme they'd ever seen. Because we didn't access crisis supports we know to be inappropriate for kids, we struggled for three years with advice to provide more consistent discipline.

I know that individual cases don't necessarily transfer to public health policy, and we fit the profile of the kinds of parents who stereotypically would have unrealistic expectations for behavior that might translate into medicating a normal, but temperamentally-challenging child. Yet I wonder if these kinds of armchair critiques of overmedicating kids (not to mention the terrible ethics violations among those advocating the bipolar diagnosis in young children) are putting theory over practice and making it hard for families to access really needed help.

I think about how much better things might have been if we had been able to get an accurate diagnosis earlier, and if we could have avoided years of having our parenting questioned, having frankly bad advice on how to discipline our son. We have finally found out (by traveling across the state for an evaluation that we had to pay for out of pocket because no one will take our private insurance for a neuropsych eval and we'd have to sue our school to get them to pay) that he has AS as well as possibly a mood disorder, and actually needs to learn in a much more structured way than most kids--typical discipline doesn't work-- and we spent years being told to do(and following through on) the opposite.

Like you say, clinicians don't have time to get in our lives in the same way we are, and certainly there are parents who don't have the ability to judge the difference between mild behavior problems and organic mental illness or developmental disability. And we rely on clinicians to help us answer those very questions. I don't know how you can make that determination in a fifteen-minute appointment, but I don't think moving toward a more conservative approach to diagnosing kids, at least for most clinicians, is going to help the kids who really need help. Just a parent perspective.
As a pediatric practitioner, what do I take from this?  A few things, but I am interested in hearing yours:
1)  Parents want both an explanation and help.  I would be really interested to have been a fly on the wall to record the words used by the various assessors.   I suspect they were trying to enunciate the facts (we honestly don't know how to label these things yet), and may have even said things like "provisional diagnosis"-  to a parent, that can seem like an unwillingness to make a diagnosis.  I have had a similar experience with ADHD-  I have a rule in my head about not diagnosing it before kindergarten, mostly because the data on medication efficacy in pre-schoolers is so iffy- and many parents perceive that as arbitrary and unfair.  It seems to the parent that, in our current model, we don't really offer help to the parent without a diagnosis, and that to withhold a diagnosis is to withhold help.  That is really frustrating.
2)  Parents want both explanation and help.  I know, and Mamacate knows, that this cannot be done in a 15 minute visit-  that this is complicated and requires time to do it right.  And yet, we set up systems that don't reward us for that time (ie  we are paid more for 4 fifteen minute medication checks than we are for a one hour consultation, and we lose more if the person with the one hour appointment fails to come to the office, than if one of the four fifteen minute people fails to come in.  AND we can use our prescribing power to lure the "short visit" patients back to the office.  Explanation and help require time-  as long as we are paid by the piece, that won' t happen.  
3)  Parents want the help to be effective.  Is it organic, is it manageable by behavior modification, will medications help?  Blame is unimportant, outcome is everything to a parent.  So, whatever we do, we need to be constantly checking in with the parent, modifying the plan in light of results and changing circumstances and bringing in the expertise that we need to make it all work.  Parents don't want drugs, necessarily, but whatever we do, they want it to work.

Nice work, Mamacate.  Hope you are feeling a bit more hopeful now- it sounds like it will still be a long road.   If you want posting privileges, just drop me a line.  You can write on this blog anytime.

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