The Magazine

Fathers and Sons

‘Special’ children in a less-than-special world.

May 13, 2013, Vol. 18, No. 33 • By TEMMA EHRENFELD
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Every Christmas I receive a charming letter from a college friend I’ll call Doug. Because we live far from each other, I have never met his three children. Reading his letters carefully, I could see that one child wasn’t flourishing as well as the others. So this past winter, when Doug and I met in person for the first time in years, I wasn’t surprised when he told me that this son was “special.” On certain tests, the boy is as bright as his siblings, who are racing through honors programs—yet he cannot remember the names of his classmates or teachers. He moves and thinks in slow motion. My mentally agile, talkative friend spends every night poring over homework with a son to whom words are like heavy stones. 

The Bundy family of ‘Married .  .  . With Children’ (ca. 1997)

The Bundy family of ‘Married .  .  . With Children’ (ca. 1997)

columbia tristar television / everett collection

His condition has a name I hadn’t heard. When I asked Doug whether there was any biological understanding of it, he threw up his hands in despair.

American parenthood is becoming more heroic. There are more kids, like Doug’s son, with odd, big problems. In the less clear cases, the “special needs” epidemic may be exaggerated, yet the parents are burdened nonetheless. The costs of raising any child seem to be soaring as well. 

And parenthood is less taken for granted; whether by choice or circumstance, nearly 1 in 5 American women ends her childbearing years without having borne a child, compared with 1 in 10 in the 1970s, according to a Pew Research Center study of census figures. 

So this study of extreme parenting comes at a pivotal moment. After 10 years of interviews with more than 300 families, Andrew Solomon describes the dilemmas, hardships, and joys of raising children with “extraordinary” needs or under extraordinary circumstances, for instance, the progeny of a rape. The book’s grand scope, creativity, and style recall the gentlemen-scholars of the 19th century, accumulating data and pondering big ideas in beautiful prose. 

Far From the Tree is a love song to parents and parenting (Solomon becomes a father at the end), but it is flawed by wishful thinking and unpersuasive on key points. Solomon comes dangerously close to saying that it’s better to have a child with disabilities than one without them: “Life is enriched by difficulty,” he writes. “Love is made more acute when it requires exertion.” Many of the families he met, he says, “have ended up grateful for experiences they would have done anything to avoid.”

While arguing with gratitude seems churlish, life always includes difficulty, and all love requires exertion. Solomon means more difficulty and more exertion, which is not a mere quibble. The outcome must depend on your starting point, the degrees of stress the situation elicits, and who you are. Solomon’s own character and history, which he shares candidly, seem to influence his argument: He is introspective, beloved, wealthy, and well-connected—all examples of the kind of good fortune that may create high expectations for parents. 

With much help, Solomon overcame dyslexia and profound depression. However, he chose the topic of parenting children who fall “far from the tree” because his own parents didn’t want him to be gay. This vast volume is the end of “a quest to forgive my mother and father for pressing me to be untrue to myself.” 

The father in question is Howard Solomon, CEO of the pharmaceutical company Forest Laboratories. The author’s earlier big book, The Noonday Demon: An Atlas of Depression, attributes his depression to the loss of his mother and describes his father’s tender round-the-clock care. The parents he interviews are also impressive, no doubt partly because parents who agree to interviews are self-selecting, and also because the book tilts towards Solomon’s kind: people with significant resources. 

Their voices are moving. “You go into Central Park with a special-needs child, and the other parents look straight through you,” one father of a disabled daughter says. “They would never think to come over and suggest that their child could play with your child. I know how they feel, because until Maisie was born, I was one of those people.” Solomon wants us to take our child over to play with Maisie because she will have something special to offer—special in a good way, without the quotation marks. He urges us, as parents and as a society, to embrace variety even when it’s deeply risky or inconvenient—to let our kids be homosexual, or transgender, say, or rely on sign language. 

His argument is clearest in his chapter on prodigies, who often suffer from dyslexia and asthma and acquire language late. Extreme musical ability may actually be the hypersensitivity to sound associated with autism, and taking music away from a child can help relieve his symptoms. Solomon quotes Leon Botstein, a former wunderkind: “If Beethoven were sent to nursery school today, they would medicate him, and he would be a postal clerk.” 

The problem is that parents don’t know how their kids will turn out—whether they’ll be miserable Beethovens, just miserable, or happy postal clerks. Solomon’s parents often face situations in which helping a child cope may require suppressing a trait, sometimes even surgically, which could cause pain. 

Turning differences into difference—much as some in the gay movement have adopted the term “queer”—Solomon calls for a new civil rights movement in which members of  the many stigmatized subcultures he describes rally together. “It’s time,” he writes, “for the little principalities to find their collective strength.” 

Imagine the Mall in Washington packed with people with all kinds of handicaps—some visible, some not—and, crucially, their parents: The crowd might simply look like humanity. That’s Solomon’s point, of course, but what exactly would they be marching for? Each of these groups has its own specific “special” needs. 

Early on, Solomon points out that his subjects didn’t want to be lumped together even in a book: “Deaf people didn’t want to be compared to people with schizophrenia; some parents of schizophrenics were creeped out by dwarfs; criminals couldn’t abide the idea that they had anything in common with transgender people.” It’s a comic moment, deeply revealing of his theme that bias is everywhere. Yet does it help people, politically or psychologically, to gather together under the banner of outsiderness or stigma? What we will surely see is more advocacy for the disabled. People with Down syndrome are living into their 50s. The many children diagnosed along the autism spectrum are growing into teenagers. The demands on social services, schools, churches, and extended families will grow.

The parent in this volume I will remember best is Sue Klebold, whose son Dylan seemed normal until his death: “He was a pretty-close-to-perfect child,” she says. “He made you feel like a great parent, because he did everything right. .  .  . He was very malleable.” She now thinks that malleability made him vulnerable to his more powerful friend, Eric Harris, with whom he killed 13 people at Columbine High School. The Klebolds stayed in town, where some of the victims’ families sued them, but Sue Klebold could speak with people who knew and liked her—and more important, she says, had liked her son. Immediately after the tragedy, she wished that she had never been a mother, but over time, her feelings changed: “I know it would have been better for the world if Dylan had never been born. But I believe it would not have been better for me.” 

In the end, I am most persuaded by my friend’s take on Solomon’s thesis: 

A lot of people find comfort in “everything is for the best” thinking. Had a disabled child? All for the best. A rocky marriage and divorce? All for the best. A past substance abuse problem? All for the best. I wouldn’t stand in judgment on how other people cope with tough stuff in their lives. But from my hard-minded rational core, I’m not sure that anything, good or bad, is “all for the best.” My son and I are going to relocate for a couple of months this spring so that he can have 10 weeks of treatments. The costs in time and family disruption are high, and the benefits are quite uncertain. So we’ll see.

 

Temma Ehrenfeld is a writer in New York.