My Networker Login   |   
feed-60facebook-60twitter-60linkedin-60youtube-60
 

Bookmarks - Page 2

Rate this item
(0 votes)

In the numerous case histories that make up the bulk of the book, he underscores the common threads he sees running through all these identity groups: the experience of marginalization and prejudice, as well as the ability—and often the need—to bond with others under a common umbrella of shared identity and culture. It’s the discovery of communal identity, he believes, that provides the most important key to healing and acceptance.

It’s a noble, optimistic, highly idealistic hypothesis, but a reader might wonder whether it’s simplistic, even paradoxical, to view such a broad range of human differences through a single lens. Despite the many particulars that separate one “different” horizontal identity from another, the great majority of Solomon’s case histories follow a similar trajectory. First comes the parents’ shock at discovering that their child isn’t the perfect being of their dreams. “I went cold. Something was terribly wrong,” one mother told Solomon when she realized that her nonspeaking 3-year-old daughter was behaving far differently from the other children in her group; soon after, she was diagnosed with autism. Before long, the reality of her daughter’s unending daily needs made her despair: “Cece wasn’t usually miserable. I was. I was insane.”

The grief of acknowledging the horizontal difference is prominent in these stories: “I’m very tall; I’m thin; I was a ballet dancer. I imagined those experiences for her,” the mother of a dwarf told Solomon. “When you have a child who can’t share those things, you mourn the loss of an imagined life.” So is the sense of ostracism and isolation: “You go into Central Park with a special-needs child, and the other parents look straight through you. They would never think to come over and suggest that their child could play with your child,” another mother reported.

Then there’s the question of how the parents themselves have come to relate to children whose medical, mental, or psychiatric abilities can impede their capacity to respond to parental love and caring. “The world of disability has seen a great deal of filicide,” Solomon reports, and he doesn’t shy away from providing some grisly case histories. For the most part, his focus turns instead to parents whose despair ultimately becomes proactive acceptance.

There’s plenty of room to be proactive. A common feature of all these case histories is the lack or severe insufficiency of social, medical, educational, financial, or governmental structures to aid families with special-needs children, who demand more time, more care, more interventions, more resources of just about every kind than their parents could provide without outside help and additional hands: in short, they require a village.

That village is usually created by the parents themselves, who must turn activist to create the necessary daycare centers, support groups for families, advocacy organizations for legal and financial issues, special-needs schools, and group homes for adult children unable to live independently. Most of the parents Solomon interviews are selfless in their ability to help others and find meaning in their activism. The children, in turn, benefit from their parents’ unconditional acceptance of their identities, although the parents may have had different expectations at the outset.

But even with a village in place, there remains uncertainty and controversy about what the “right” thing is for these families. For instance, we have a growing availability—and demand—for medical interventions that can potentially “correct” certain differences (cochlear ear implants for the deaf, surgery and hormone treatments to increase the height of dwarfs) or selectively abort fetuses that test positive for Down syndrome or other genetic conditions. The tension caused by the bioethical dilemma of whether or not to use such treatments and interventions appears throughout the book. It will no doubt surface increasingly as newer and more sophisticated medical possibilities become available.

Throughout, Solomon gives us inspiring tales of valiant parents and families, but there are so many case histories, and so many are filled with hardship and suffering and disappointment, that a sense of oppressiveness begins to set in. It’s as if, in focusing on so many children whose frailties and needs are devastating, Solomon dares you to love these children as their parents ultimately feel life has dared them to do. The most dramatic example appears in his interview with Tom and Sue Klebold, whose son Dylan was one of the perpetrators of the 1999 Columbine High School massacre and who committed suicide in its aftermath. “I am glad I had kids and glad I had the kids I did, because the love for them—even at the price of this pain—has been the single greatest joy of my life,” Sue told Solomon. “When I say that, I am speaking of my own pain, and not the pain of other people. But I accept my own pain; life is full of suffering, and this is mine. 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.”

It’s with interviews like this that Solomon compels you to ask yourself: What you would do? What are your limits? Unfortunately, he provides few stories that would help parents decide how to weigh their personal self-preservation against the overwhelming uncertainty of how to cope with the challenges of children that go so far beyond the norm. Solomon acknowledges that if the caregiver can’t thrive, the child can’t either, yet rarely does he give examples of parents who’ve weighed their own limitations and decided to terminate a pregnancy or give up their child.

The only identity group in the book that doesn’t carry with it any of what Solomon calls “the whiff of negativity” is prodigies. For Solomon, that’s no doubt an indicator of the value we place on certain capabilities, or the lack thereof; however, as much as I enjoyed reading about great musical prodigies like pianist Evgeny Kissin and violinist Joshua Bell, their stories seemed to have less to do with a struggle with their horizontal identity than with refining their artistry.

More than anything, I wish Solomon had taken the time in each chapter to elaborate on strategies that foster or obstruct developmental growth on both sides of the generational divide. The common best practices I picked out from chapter to chapter include the urgency of advocating for your child, the extreme importance of early intervention, the need for support systems, and the good that can result from building communities of support—all excellent items of advice, but you don’t need to read 1,000 pages to learn that.

I longed for Solomon to grapple with questions of what we, as a society—and not just proactive parents—can do in an era of continuing budget cuts. He provides brilliant, gripping portraits of tree after tree. What’s missing is a more panoramic view of the forest to which we all belong and need to understand, improve, and protect.

The collective impact of the book is undeniable, precisely because, page after page, Solomon’s case histories bring home the intense strength of the parental bond, even and especially in extremity, when severe disabilities can thwart the expectation of receiving the simplest rewards of parenthood—that of giving and being shown love in return. How parents manage to wrest meaning from circumstances they—and we—wouldn’t ever wish to confront is the story of resilience from which we can all learn.

Contributing editor Diane Cole is the author of the memoir After Great Pain: A New Life Emergesand writes for The Wall Street Journal and many other publications. Contact: djcole86@gmail.com.

 

Tell us what you think about this article by leaving a comment below or sending an email to letters@psychnetworker.org.

<< Start < Prev 1 2 Next > End >>
(Page 2 of 2)

Leave a comment (existing users please login first)