Nonfiction

Profiles of tolerance and triumph

 

The author spent 10 years interviewing parents of children with serious problems.

Andrew Solomon’s new book, on the parents of children with serious medical problems, would make the world’s worst baby shower gift. From dwarfism and Down syndrome to schizophrenia and autism, Solomon delivers a compendium of news you don’t want to expect when you’re expecting. Although some of the conditions startle, the book is no lurid freak show. On the contrary, Solomon forcefully showcases parents who not only aren’t horrified by the differences they encounter in their offspring, but who rise to the occasion by embracing them. In so doing, they reveal a “shimmering humanity” that speaks to our noblest impulses to nurture.

Far From the Tree is massively ambitious and also just simply massive. It’s exhaustive and occasionally exhausting, but more often inspirational about the “infinitely deep” and mysterious love of parents for their children. Motivated in part by his difficult experience with negotiating his own homosexuality, Solomon, author of the National Book Award-winning book on depression The Noonday Demon, spent a decade interviewing more than 300 families, compiling 40,000 pages of transcripts about 10 widely varied conditions. “It would have been easier to write a book about five conditions,” he admits in his introduction. “I wanted, however, to explore the spectrum of difference.” So he visited juvenile criminals in Minneapolis and a congenitally deaf village in Bali. He interviewed victims of horrific incest and family abuse. He spent time with women who bore children conceived in rape and even with child prodigies, whose gifts, paradoxically, force them to face issues similar to those of children with severe disabilities.

Solomon stresses a common dilemma: All the parents must navigate the “tension between identity and illness,” or “between cure and acceptance.” So, for instance, should a deaf child be encouraged to learn sign language and join the deaf community, or, contrarily, to learn to lip-read and speak so as to better assimilate? Should the parents of a dwarf help their child feel comfortable with his size, or submit him to limb-lengthening operations? Are the parents of a profoundly disabled child within their moral rights to administer growth-inhibiting medication, so they can still lift their “pillow angel” by hand to change her diapers rather than having to hoist her up at adult size with an elaborate medical crane? At what point should parents allow their male child to wear a dress to school or allow him to take puberty-delaying drugs, so as to make his eventual sex change operation easier?

Often Solomon embraces finding a balanced, measured middle ground. Autism, he says, “can be mitigated by some combination of treatment and acceptance, specific to each case. It is important not to get carried away by either the impulse only to treat or the impulse only to accept.” About transgender children, he notes, “Parents must determine whether such children are in a transient obsession or expressing a fundamental identity … Parents must take care not to squash their child’s identity, nor to build it up so much that they create the truth to which they intend to respond.”

Easier said than done. Much of the heartbreak in Far From the Tree comes from reading about parents’ struggles to arrive at that often elusive balance. As one expert Solomon quotes says about schizophrenia, “When an illness is viewed as inexplicable and impenetrable, people tend to react to it with one of two extremes: either they stigmatize it or they romanticize it. It’s hard to know which is worse.” The parents of violent criminals often feel guilty in exactly contradictory ways — for having been too lenient with their children and too hard on them. Over and over, we watch parents carom between hope and despair.

A large part of the book is composed of introductory lessons on the history, science and treatment choices of each condition. This context is necessary, but occasionally cumbersome. Solomon is not a physician or social scientist. Experts in each field will no doubt have bones to pick with his methodology — the size of the cross-cultural cohort, for example, or the heavy skewing of his samples toward people of means. The book’s structure is a bit awkward because, despite 199 pages of bibliography and footnotes (merely “a compressed form,” he reminds us, and to be found “at greater length online”), the overall approach is more journalistic than scholarly. Given the amount of material he has synthesized, Solomon might have offered more of an overarching theory about the qualities of the successful parents. Rather too insistently he just emphasizes, and praises, their positive outlooks, their ability to play uncomplainingly the hand they’re dealt.

That said, Far From the Tree doesn’t purport to be an original work of theoretical research on family dynamics. It’s more of a hybrid series of thematically linked oral histories, the majority of which are deeply moving about the strength of parents who display heroic energy and creativity. Here is how Emily and Charles work to stimulate their profoundly retarded newborn, and the sort of detail Solomon is consistently able to draw from his subjects:

“Emily sewed a quilt that had a different fabric every few inches — terry cloth, velvet, AstroTurf — so that every time Jason moved he would experience a new sensation. When he was six months old, they took a giant roasting pan and filled it with Jell-O, forty packages’ worth, and lowered him into it so he could writhe around and experience the strange texture, and eat some of it, too. They used brushes on the soles of his feet to make his toes curl up.”

The pair who most exemplify the altruistic, self-aware love that Solomon celebrates are Tom and Sue Klebold. Their son was Dylan, one of the two teenagers who rampaged at Columbine High School on April 20, 1999. The number of dead from that horrific event is generally listed at 13, but the two perpetrators also died. Tom and Sue were utterly blindsided by the event and had to deal with not only their own shock and grief but being ostracized from their Colorado community. “I can never decide whether it’s worse to think your child was hardwired to be like this and that you couldn’t have done anything, or to think he was a good person and something set this off in him,” Sue says. “What I’ve learned from being an outcast since the tragedy has given me insight into what it must have felt like for my son to be marginalized.”

With this and many of the other profiles he has so assiduously collected, Solomon allows his readers to witness the “extraordinary clarity” of such love.

Lisa Zeidner reviewed this book for The Washington Post.

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