In the New York Times, Polly Morrice reviews Karl Taro Greenfeld’s memoir about growing up in the shadow of a brother with autism.

She says “Boy Alone” allows Greenfeld to “exhume some festering emotions” about the intense media attention lavished on his younger brother Noah, who was the subject of several popular books written by their father in the 1970’s.

Karl vividly shows how his parents’ focus on Noah, and Noah’s profound autism, left him the “boy alone” of the book’s title …

The book’s emphasis … stays squarely on what might be called the brotherhood problem: can you love, and someday care for, a sibling who will never return your affection? The answer may not reassure the parents of the Noahs of the world, who form an obvious audience for “Boy Alone.” But it probably won’t surprise them, either.

(New York Times photo)

Writing in the Washington Post, Barry Werth reviews “Annie’s Ghosts” by Post associate editor Steve Luxenberg.

Luxenberg uses his background as a journalist to construct a “probing, wise and affecting new memoir” about a family secret, Werth writes. Why had Luxenberg’s mother said she was an only child when she actually had a sibling? Her sister Annie, who had disabilities, was sent to an institution.

[Annie Cohen] was born in 1919 with a deformed leg and with mental challenges that today would classify her as borderline mentally disabled. The first secret that Luxenberg uncovered — the one that would propel him to dig far beyond Annie’s unhappy life to the “ghosts” of the title — was that she’d been sent away not, as his mother told her social worker, when she was 2 and Beth 4, but after suffering a psychotic break when Annie was nearly 21 and Beth 23, unmarried and still living at home.

Not only had Beth not been an only child … but she also had lived up until adulthood under the same roof as Annie, along with the shame and stigma of having a damaged family member at a time when mental and physical deformities were poorly understood and worried over as darkly hereditary and reflective of everyone in the household.

See also:

Baltimore author Steve Luxenberg juggles his roles as a tenacious reporter and a loving son in his memoir of his mother — Baltimore Sun

A journalist uncovers his family’s ‘Ghosts’ — NPR, All Things Considered

Steve Luxenberg’s quest — Michigan Public Radio

Interviewed on NPR, journalist Karl Taro Greenfeld says his childhood was overwhelmed by his brother Noah, who is severely autistic. Noah became a celebrity in the 1970s when their father, Josh Greenfeld, wrote a series of best-sellers about him. Karl Taro Greenfeld is the author of the just-released memoir, “Boy Alone.” (Earlier post here.)

Excerpts from Greenfeld’s interview with NPR’s Michele Norris:

… “when you have a developmentally disabled person in your family … the gravity of the family is tilted disproportionately toward that person. In my family, Noah became the center of everything.”

… “Almost as soon as I have a memory of myself, the memory is of worrying about Noah,” Greenfeld says. “I was very much the less important sibling. I don’t look back on that with any kind of self-pity; it just was the reality of the situation.”

… More than once, Greenfeld uses the word “idiot” to describe his brother.

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Time magazine carries a portion of “Boy Alone,” an upcoming memoir by journalist Karl Taro Greenfeld about growing up in the shadow of his autistic brother, Noah.

Greenfeld writes here about his family’s attempts to find an acceptable living situation for Noah, whose challenging behaviors have included head-banging, pinching and grabbing others. Greenfeld says the expected surge in the number of autistic adults creates a likelihood that people like his brother “will be a burden to parents, siblings and, eventually, society.” An excerpt:

We are largely unprepared to deal with this crisis. Autism funding and research, so far, have predominantly focused on children. When I have visited autism conferences, there have been exceedingly few research projects devoted to low-functioning adult autistics. It remains difficult for families of adult autistics to find the programs they need, to access those services that are available and even to locate medical professionals and dentists who can handle adult autistics. Too much of the burden rests on the families themselves, who remain in the picture as caregivers, advocates and, too often, the only party with the autistic adult’s best interests in mind.

… Will I always be there for Noah, as my parents have been?

I wish I could say, Yes, definitely, I will be there.

But I honestly don’t know.

Noah Greenfeld was the subject of an earlier trilogy of books by their father, screenwriter Josh Greenfeld: “A Child Called Noah,” “A Place for Noah,” and “A Client Called Noah.”

Writing in the Boston Globe, Beverly Beckham offers high praise for a new children’s book that explores the relationship between two sisters, one with Down syndrome. An excerpt:

My granddaughter Lucy has Down syndrome. I have spent the last five years in search of a book like this. Until “My Sister, Alicia May” I found nothing.

… “My Sister, Alicia May” which will be released May 1, is the story not just of two real girls, Alicia May and her sister Rachel, but of every child who has a sister or a brother or a friend. It is the story of what it’s like to love someone. Sometimes the people you love irritate you the most. Sometimes you want to pretend you don’t know them. Sometimes you don’t want them tagging along. Sometimes you’re so proud of them you want to tell the world.

By Patricia E. Bauer

Kids whose brothers and sisters have Down syndrome — or any disability, for that matter — often find themselves interpreting their sibling to the world.

Yet how much do they really know about their brother or sister’s condition? And how do they cope with the personal questions, unwanted stares, and complicated emotions that often seem to go with the territory?

Co-authors Brian G. Skotko and Susan P. Levine have come up with some answers in their new book, “Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.”

Skotko, a doctor at Children’s Hospital Boston whose sister has Down syndrome, and Levine, a social worker with Family Resource Associates Inc. in New Jersey, have been conducting workshops for brothers and sisters of people with Down syndrome for the past ten years. Along the way, they’ve been collecting siblings’ thorniest questions and developing thoughtful and knowledgeable answers for them.

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Young adult has no state aid, no place to go

Chicago Sun-Times columnist Neil Steinberg writes about Louie Herrera, a 22-year-old man with Down syndrome who is unfortunate enough to live in Illinois — the state that ranks dead last in providing community services for people with disabilities.

Scarce Illinois resources are focused on large facilities, and even those are hard to get. People with disabilities who are trying to find whatever help is available in Illinois go on a waiting list to be evaluated. That waiting list currently has 16,000 names on it.

… The struggle between a system that favors large institutions and the trend toward small community homes is a central concern for the disabled community.

“This is not just about service, not just about a system that supports institutionalization vs. community living,” says Marca Bristo, CEO of Access Living, a Chicago advocacy group for the disabled. “This is at the heart of our civil rights struggle.”

(Chicago Sun-Times photo)