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'A Special Education' by Dana Buchman and 'Fragile Innocence' by James Reston Jr.
Hands-on experience: How special-needs kids created special parents
Sunday, May 21, 2006

When the realization hits that your child is different, the impact is immediate, yet slow to dawn at the same time.

  
"A SPECIAL EDUCATION: ONE FAMILY'S JOURNEY THROUGH THE MAZE OF LEARNING DISABILITIES"
By Dana Buchman
Da Capo Press ($21.95)

"FRAGILE INNOCENCE: A FATHER'S MEMOIR OF HIS DAUGHTER'S COURAGEOUS JOURNEY"
By James Reston Jr.
Harmony ($23)
Once you work through the shock and denial, you must live with, potentially, years of exhaustion and, as child psychologists call it, "emotional lability."

Even if you are fortunate to be educated and financially well off, you can get socked. How you, your spouse, your special-needs child and any siblings make it through the dips and turns in the journey varies dramatically, but no one avoids the impact.

Two recent first-person accounts detail the experience in depth and make for good reading for parents facing any level of special need in their children.

In "A Special Education: One Family's Journey Through the Maze of Learning Disabilities," Dana Buchman writes of her years dealing with the diagnoses of her daughter, Charlotte Farber.

Buchman heads a high-end fashion design label bearing her name, and her line was launched about the time her daughter was born, tumbling her and her family into an existence that frayed Buchman's expectations of a long-lasting, orderly, high-achieving lifestyle.

In "Fragile Innocence: A Father's Memoir of His Daughter's Courageous Journey," writer and historian James Reston Jr. chronicles the life of his daughter, Hillary, who suffered brain damage, most likely from a high fever when a toddler, followed by years of seizures.

(Reston is the son of the late New York Times columnist James Reston and father of the Post-Gazette's national writer, Maeve Reston.)

His tale is similar to Buchman's in detailing the heartbreak, anger, denial and, ultimately, acceptance and abiding dedication to his special child.

Because he is a professional writer, and because Hillary Reston's case is much more medically involved, his tale seems more emotionally charged. His epiphanies appear higher and lower, as Hillary's life is imperiled several times.

He delves into the medical issues stemming from his daughter's condition, including the Restons' incredible tale of hanging for years on various hypotheses, sometimes waiting interminably due to acts of apparent negligence or thoughtlessness. (Once one of his daughter's urine samples was shelved in the back of a refrigerator and forgotten for months). Reston also details the politics of sustaining a life some would consider to be too damaged for investment into, genetic engineering and organ donation.

His daughter received a life-saving kidney transplant. In a particularly touching segment, he describes his contact with the family of the organ donor, a young man killed in an ATV race.

Buchman devotes more space to outlining her regret -- spending too much time and emotional energy at work; losing her temper with her challenged daughter; not doing enough to address the needs of her youngest daughter, Annie, who does not have Charlotte's issues.

Her emotions ring true. Regret and second-guessing are certainly among the experiences of the parent of a special needs child.

Reston and Buchman provide genuine and deeply felt expressions of the lessons they've learned. As they journey along with their special needs child and their families, they affirm family ties, marriages and, most importantly, the value of their special children and love for them.

Reston's descriptions of Hillary's birthday parties, a true celebration of her accomplishments and the people who help her live as fully as possible, are gems.

Buchman's story of watching her coordination-challenged daughter finding a true, smooth gait as a runner is uplifting.

And as many parents of such children discover, both authors write of how the experience taught them much, good and bad, about themselves.

Buchman is donating proceeds from her book to the National Center for Learning Disabilities in New York.

First published on May 21, 2006 at 12:00 am
Margi Shrum is the parent of a child with special needs. She can be reached at mshrum@post-gazette.com or 412-263-3027.
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