Here, Dr. Cotler offers his response to our blog-post, "Raging Non-Conformists," 2/28/09.
It would be easy, but unfair, to criticize a father who finds fault with nearly everyone involved in raising his child, including his “son’s mother,” who “bought the doctors’ lines” and “gave up” on trying to protect the child from doctors and teachers who meant him harm. It gets easier still when we read that this father didn’t have the time or the emotional strength to participate, so he “went along” with decisions he knew were wrong.
It is appropriate that the first response to this post is from someone who knows the family well, and was able to give some context to the personal side of the discussion. (I also appreciated the slightly snarky parody of misplaced nostalgia for a time that never was. The poster thinks he remembers a time when life was better for “the recalcitrant ones, the strange and weird kids, and the troublemakers.")
It would be equally easy and unfair to use this post as a takeoff point for rants against the collective misdeeds of professionals whose careers are devoted to children and families. I do not know this family either socially or medically, but I have had patients with similar medication histories, and their experiences can provide context for ongoing discussion. My remarks specifically exclude immoral or incompetent “pillpushing” doctors, untrained or uncaring educators, and manifestly unfit parents, although all of these certainly exist. (To what extent they exist will, I suspect, be discussed by other posters.)
Most importantly, parents of such children are desperate for help.
Their day-to-day life is often unbearably difficult, but their fear for their child’s future is awful to listen to. (“How can he have a career, a family? How will he ever take care of himself?”) Parents blame each other; they blame themselves. Patients like this (as well as those with non-psychiatric neurodegenerative disease, chronic pain syndromes, and other illnesses) interface with the weakest parts of our less than optimal medical system. The science of their problems is in its infancy, so today’s medicine cannot give them a diagnosis, let alone a well-grounded treatment plan.
In addition, these kinds of patients require time-intensive care, which our current system is bad at delivering. These families are apt to have a bad relationship with the system as a whole, stuck in a destructive cycle of mutual mistrust, poor communication, and bad outcomes. But even the most disaffected families usually identify one or more special caregivers, and there are many families that recognize that their doctors, therapists and teachers are also desperate. The professionals, like parents, have a responsibility to help, but no adequate tools.
I meet with parents and patients like this on a regular basis. Sometimes they are doing OK; often not. A typical interval history might sound like this: “He’s in another new private school; this may be our last option. We’re fighting the school district now to get them to pay for it. He was doing well for a while, even mainstreamed for part of the day, but we were trying a change in his meds because of some side effects, and the one-to-one aide he really liked was out for a few days, and we don’t know exactly what happened, but it was his last chance at the other school. Our neurologist referred us to another neurologist who has experience with kids like this. He has an idea about a treatment plan based on some new research. It still means using drugs off-label, and it seems like mainly intuition, but he explains his thinking to us, and we have to do something.”
I have been around long enough to see some of these kids grow up. It is moving to have a parent tell me “he found his niche. He’s happy at what he is doing, and he seems good at it.”
But it doesn’t always go that way.
COMING UP NEXT:
DoulaMomma by Kim Collins
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