Medically Complex Children Quotes

Eighty two percent of the traumatized children seen in the National Child Traumatic Stress Network do not meet diagnostic criteria for PTSD.15 Because they often are shut down, suspicious, or aggressive they now receive pseudoscientific diagnoses such as “oppositional defiant disorder,” meaning “This kid hates my guts and won’t do anything I tell him to do,” or “disruptive mood dysregulation disorder,” meaning he has temper tantrums. Having as many problems as they do, these kids accumulate numerous diagnoses over time. Before they reach their twenties, many patients have been given four, five, six, or more of these impressive but meaningless labels. If they receive treatment at all, they get whatever is being promulgated as the method of management du jour: medications, behavioral modification, or exposure therapy. These rarely work and often cause more damage.

Everyone involved in our children’s transition failed to adequately address or treat the full range of each child’s complex personality and history. The affirmation care model and those involved in it also failed to preserve the precious parent-child bond.

If you were to assume that many experts use their information to your detriment, you’d be right. Experts depend on the fact that you don’t have the information they do. Or that you are so befuddled by the complexity of their operation that you wouldn’t know what to do with the information if you had it. Or that you are so in awe of their expertise that you wouldn’t dare challenge them. If your doctor suggests that you have angioplasty — even though some current research suggests that angioplasty often does little to prevent heart attacks — you aren’t likely to think that the doctor is using his informational advantage to make a few thousand dollars for himself or his buddy. But as David Hillis, an interventional cardiologist at the University of Texas Southwestern Medical Center in Dallas, explained to the New York Times, a doctor may have the same economic incentives as a car salesman or a funeral director or a mutual fund manager: “If you’re an invasive cardiologist and Joe Smith, the local internist, is sending you patients, and if you tell them they don’t need the procedure, pretty soon Joe Smith doesn’t send patients anymore.” Armed with information, experts can exert a gigantic, if unspoken, leverage: fear. Fear that your children will find you dead on the bathroom floor of a heart attack if you do not have angioplasty surgery. Fear that a cheap casket will expose your grandmother to a terrible underground fate. Fear that a $25,000 car will crumple like a toy in an accident, whereas a $50,000 car will wrap your loved ones in a cocoon of impregnable steel.

The obvious alternative to blaming the parent is to conclude that there is something amiss or lacking in the child. If we are not given to doubt our parenting, we assume the source of our trouble must be the child. We take refuge in the child-blaming thought that we have not failed, but our children have failed to live up to the expected standards. Our attitude is expressed in questions or demands such as Why don't you pay attention? Stop being so difficult! Or, Why can't you do as you're told? Difficulty in parenting often leads to a hunt to find out what is wrong with the child. We may witness today a frantic search for labels to explain our children's problems. Parents seek the formal diagnoses of a professional or grasp at informal labels — there are, for examples, books on raising the “difficult” or the “spirited” child. The more frustrating parenting becomes, the more likely children will be perceived as difficult and the more labels will be sought for verification. It is no coincidence that the preoccupation with diagnoses has paralleled the rise in peer orientation in our society. Increasingly, children's behavioral problems are ascribed to various medical syndromes such as oppositional defiant disorder or attention deficit disorder. These diagnoses at least have the benefit of absolving the child and of removing the onus of blame from the parents, but they camouflage the reversible dynamics that cause children to misbehave in the first place. Medical explanations help by removing guilt but they hinder by reducing the issues to oversimplified concepts. They assume that the complex behavior problems of many children can be explained by genetics or by miswired brain circuits. They ignore scientific evidence that the human brain is shaped by the environment from birth throughout the lifetime and that attachment relationships are the most important aspect of the child's environment. They also dictate narrow solutions, such as medications, without regard to the child's relationships with peers and with the adult world. In practice, they serve to further disempower parents.

The adults who had been abused as children often had trouble concentrating, complained of always being on edge, and were filled with self-loathing. They had enormous trouble negotiating intimate relationships,” van der Kolk writes. “They also had large gaps in their memories, often engaged in self-destructive behaviors, and had a host of medical problems. These symptoms were relatively rare in the survivors of natural disasters.” In other words, complex trauma created a consistent set of defensive traits—of personality quirks—within its victims. And these were uniquely terrible even within the PTSD community.

For many school-aged adopted children, daydreaming is a very understandable and necessary strategy for doing the extra work of forming identity. Daydreaming, though, is often taken as a symptom of attention deficit disorder or attention deficit hyperactive disorder; it is in fact one of the many indicators that leads to the diagnosis of ADD. There are many children who do have this real disorder, and it is important in these cases to find the appropriate behavioral or pharmacological treatments. But, for adopted children, and for some other children in complex or difficult situations, the daydreaming or distracted air is not always an indicator of ADD. Too often, teachers seem to be making diagnoses and suggesting medications and treatments to parents. This is inappropriate and unethical, and it is one of the reasons I feel the curriculum in schools of education must include information concerning the special circumstances of adoptive families.

All of this told of harm done, of a drug that made a child depressed, lonely, and filled with a sense of inadequacy, and when researchers looked at whether Ritalin at least helped hyperactive children fare well academically, to get good grades and thus succeed as students, they found that it wasn’t so. Being able to focus intently on a math test, it turned out, didn’t translate into long-term academic achievement. This drug, Sroufe explained in 1973, enhances performance on “repetitive, routinized tasks that require sustained attention,” but “reasoning, problem solving and learning do not seem to be [positively] affected.”26 Five years later, Herbert Rie was much more negative. He reported that Ritalin did not produce any benefit on the students’ “vocabulary, reading, spelling, or math,” and hindered their ability to solve problems. “The reactions of the children strongly suggest a reduction in commitment of the sort that would seem critical for learning.”27 That same year, Russell Barkley at the Medical College of Wisconsin reviewed the relevant scientific literature and concluded “the major effect of stimulants appears to be an improvement in classroom manageability rather than academic performance.”28 Next it was James Swanson’s turn to weigh in. The fact that the drugs often left children “isolated, withdrawn and overfocused” could “impair rather than improve learning,” he said.29 Carol Whalen, a psychologist from the University of California at Irvine, noted in 1997 that “especially worrisome has been the suggestion that the unsalutary effects [of Ritalin] occur in the realm of complex, high-order cognitive functions such as flexible problem-solving or divergent thinking.”30 Finally, in 2002, Canadian investigators conducted a meta-analysis of the literature, reviewing fourteen studies involving 1,379 youths that had lasted at least three months, and they determined that there was “little evidence for improved academic performance.”31

Without a solid ethical grounding, children risk growing into adults who, however outwardly accomplished, lack emotional depth, have impaired social and family relationships, and are vulnerable to depression and despair. But the danger goes further and broader: in the many interviews I conducted, the recurring theme was ethical accountability. Issues that are critical today will be urgent tomorrow. Who will regulate AI? Who will have access to the extraordinary medical breakthroughs that are surely coming? How will technological research be controlled? What reasoning will shape our decisions about energy production and fossil fuels? How do we prevent democracy from deteriorating under authoritarian encroachment? “Winner takes all” isn’t a moral philosophy that can successfully carry us through this century. Our children need to understand how to make complex decisions with moral implications and ramifications. More than any other area of concern I have after researching this book, I’ve concluded that it is exactly in this area of moral reasoning that the stakes are so high and our attention so lacking

The message of Microbe Hunters was clear: Great men like Pasteur, Reed, Theobald Smith, and Paul Ehrlich were a rare breed. But for all their skill, training, and dogged pursuit of that deadly microbe or magical elixir, their mission was infinitely complex, the challenges multifaceted, and the trail of disease and death a daily occurrence.

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