Parents look to books for help and hope in dealing with disabilities and childhood disease.
by Kathryn E. Livingston -- Publishers Weekly, 6/1/2009
The Power of Memoir
In Isaacson's powerful The Horse Boy: A Father's Quest to Heal His Son (Little, Brown), the author notes that the Web is the resource most parents of autistic kids turn to for information. But that may be changing, and if so, Isaacson's own riveting memoir may lead the way. Not only is the book imbued with drama and atmosphere (it's not every day that a shaman comes to visit), it's also filled with the challenging everyday details of living with an autistic child.
A Child's Journey Out of Autism by Leeann Whiffen (Sourcebooks) is also a gripping tale of triumph. Says senior editor Shana Drehs, “Autism is a problem that only seems to be growing, with more and more kids diagnosed every year. This is such a positive story of how a mom, without any special resources or special connections, did everything she could for her son and managed to find a way to pull him out of it. It's a story of triumph and hope and a mother's love prevailing, and I think this is a message that people are looking for right now.”
Lynn and Randy Gaston's Three Times the Love: Finding Answers and Hope for Our Triplets with Autism (Avery) chronicles the experiences of “an ordinary American family overcoming extraordinary odds.” As the couple struggle to care for three sons—each at a different place on the autism spectrum—they offer an overview of the therapies and resources available to parents of autistic kids. “It's part memoir, part guidebook,” says Anne Kosmoski, senior publicist, adding, “It's a heartfelt story, but they also wanted to give advice, since there are no real guideposts to follow.”
Boy Alone: A Brother's Memoir by Karl Taro Greenfeld (HarperCollins) shines a harsher light on the subject, revealing that not enough is being done for the aging autistic community. Greenfeld, brother of Noah (the subject of A Child Called Noah, the first in a trilogy by the boys' father, Josh Greenfeld, published in the 1970s), writes from his perspective as the “normal” child. As his parents age, it becomes clear that Noah, now 42 and institutionalized, will eventually become the author's responsibility. “It's a complicated family drama and clearly the sibling point of view is important,” notes Gail Winston, executive editor, “but in the same way that people read Joan Didion's memoir even if they have not lost a husband, people will read this book as memoir. I see this as a memoir for a general reader as much as for the autism community or for people with children with special needs.” It is also, she observes, a book of activism that dramatically underlines the legacy of care.
Parents searching for cures and answers can make for suspenseful stories. Saving Sammy: Curing the Boy Who Caught OCD by Beth Alison Mahoney (Crown) is “part manifesto, part medical mystery.” The book recounts the tale of Sammy, a healthy boy diagnosed with obsessive-compulsive disorder at the age of 12. But author/mom Mahoney follows the clues to find that an undiagnosed strep infection caused her son's devastating condition. Schuyler's Monster by Robert Rummel-Hudson (St. Martin's) tells of a wordless little girl and a father's search to unravel the “monster” behind his daughter's silence.
For an unusual twist, readers may turn to Trainwreck: My Life as an Idoit by Jeff Nichols. From Touchstone, this is the offbeat, funny memoir of an adult with ADD, dyslexia and other disabilities.
Paths to Healing
A number of titles recently or soon to be released offer the straightforward advice, information and support eagerly sought by parents of special needs kids. Overcoming ADHD: Helping Your Child Become Calm, Engaged and Focused—Without a Pill by Stanley I. Greenspan, M.D., with Jacob Greenspan (Da Capo) advocates treatment of ADHD without medication. “Any time someone like Stanley Greenspan is talking about special needs issues, people are going to listen, and they need to listen because he's one of the country's foremost authorities in this area,” says Lissa Warren, vice president, senior director of publicity. “Greenspan is really known for his behavioral therapy approach. Parents are very concerned about medications and potential side effects, and this is a book, written by a psychiatrist—an M.D.—saying that ADHD can be treated without medication.”
Healing and Preventing Autism by Jenny McCarthy and Jerry Kartzinel, M.D. (Dutton), is McCarthy's third book on the subject. “All three have hit the New York Times bestseller list, and they've sparked a lot of debate,” notes publicity manager Amanda Walker. McCarthy, an autism activist and mother of an autistic son, helped organize a march on Washington to bring attention to the issue and has founded an autism organization called Generation Rescue. “We're hoping this is going to be a solid, ongoing reference guide that parents can turn to again and again,” Walker says.
My Child Has Autism: What Parents Need to Know by Clarissa Willis (Gryphon House) is “the first book I'd buy if my child were diagnosed with autism,” says marketing and trade sales director Cathy Calliotte. “It takes out all the jargon and really breaks it down so that you understand the spectrum. The book gives concrete, doable strategies, by a compassionate author who has worked with autistic children for more than 20 years.”
Anne Ford, author of Laughing Allegra: The Inspiring Story of a Mother's Struggle and Triumph Raising a Daughter with Learning Disabilities, offers immediate help and advice for parents just confronting the diagnosis in A Special Mother: Getting Through the Early Days of a Child's Diagnosis of Learning Disabilities and Related Disorders (Newmarket).
William Stillman's Empowered Autism Parenting: Celebrating (and Defending) Your Child's Place in the World (Wiley/Jossey-Bass) is Stillman's fifth book on the subject. From his distinct, “inside out” perspective as an adult with Asperger's syndrome, he urges parents to advocate for their children and to protect them against being pathologized, overmedicated and marginalized. Several special needs titles that are useful for parents and teachers alike are also in the lineup, says Meredith Stanton, Wiley associate publicist, including The Autism Checklist by Paula Kluth, Life Skills Activities for Special Children by Darlene Mannix, How Can My Child Succeed in School? by Craig Pohlman, The ADD/ADHD Checklist, second edition, by Sandra F. Rief and Homeschooling the Child with Autism by Patricia Schetter and Kandis Lighthall.
At St. Martin's Press, Quirky Yes, Hopeless No: Practical Tips to Help Your Child with Asperger's Syndrome Be More Socially Accepted by Cynthia La Brie Norall, with Beth Wagner Brust, explores the challenges of kids with Asperger's in an A to Z format. Associate editor Alyse Diamond says: “Cynthia La Brie started a fantastic organization for Asperger kids called Friends' Club, which brings these kids together to practice social skills.” Quirky Yes, Hopeless No offers “tons of tips, games and information.”
Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Integration Issues by Lindsey Biel and Nancy Peskewill be reissued by Penguin with updated and expanded information. With an introduction by the brilliant autist and author Temple Grandin (Thinking in Pictures), the work explores the topic of sensory integration dysfunction, a condition in which the body doesn't properly register and process sensations.
Parents dealing with learning problems will be interested in Light Up Your Child's Mind: Finding a Unique Pathway to Happiness and Success by Joseph S. Renzulli and Sally M. Reis with Andrea Thompson (Little, Brown). The book helps light the fire of learning in every child—from the special needs to the gifted—through the Renzulli method of teaching, now available for parents. Senior publicist Sabrina Callahan says, “What this book shows is that every child is gifted in his or her own way. It helps parents cultivate their child's unique talents while building skills and confidence.”
In March, Free Spirit published an updated and revised third edition of The Gifted Kids' Survival Guide for Ages 10 & Under. Says author and Free Spirit president and founder Judy Galbraith, “On a social and emotional level, gifted kids are very similar to the special needs student because they often feel ostracized, and they feel school is inadequate for them, but for different reasons.” The book's audience is parents, teachers and kids, and covers the social and emotional challenges gifted kids face. Free Spirit also offers a number of back titles on ADHD, Asperger's, learning disabilities and other special needs topics.
Jessica Kingsley Publishers (in the U.K., but distributes worldwide) has an armful of special needs titles coming up, including Coach Yourself Through the Autism Spectrum by Ruth Knott Schroeder, Grandparenting a Child with Special Needs by Charlotte E. Thompson, M.D., Art as an Early Intervention Tool for Children with Autism by Nicole Martin and First Steps in Intervention with Your Child with Autism by Phil Christie et al. The Imprinted Brain: How Genes Set the Balance Between Autism and Psychosis by Christopher Badcock, who teaches at the London School of Economics and blogs for Psychology Today, presents “a revolutionary new theory about what could be causing autism,” says marketing manager Tony Schiavo. Targeted for the “informed general reader,” the book delves into the genetic dimension of the disorder.
The Diet Connection
Diet and nutrition is an exciting area of treatment for kids with autism and other special needs. The Autism and ADHD Diet by Barrie Silberberg (Sourcebooks) is aimed to help parents with the gluten-free, casein-free diet. Peter Lynch, editorial manager, trade, says the book is unique because it's written by a mother who successfully negotiated the GFCF diet with her own autistic child. “What made this project specifically attractive was that there are a lot of elements to the diet and it's difficult to follow, yet here is a parent who has gotten this done in her life, and seen amazing improvements with her child,” Lynch says.
Eating for Autism: The 10-Step Nutrition Plan to Help Treat Your Child's Autism, Asperger's or ADHD by registered dietitian Elizabeth Strickland (Da Capo Lifelong) includes recipes and valuable information on how to transition to a gluten- and casein-free diet. Says Katie McHugh, executive editor, “Strickland really breaks down the interventions into small, manageable steps designed for a child with special needs. Her plan is very specific, realistic for parents, and done with the child in mind.”
Judy Converse, author of Special-Needs Kids Eat Right (Perigee), says, “The bottom line is that these kids do have nutrition problems and gastrointestinal problems that are very treatable.” Converse, a registered licensed dietitian specializing in dietary intervention for autism, offers an action plan to help parents implement healthful strategies, build a nutrition team and sort out “the nutrition piece of the autism puzzle.”
Cooking for kids is always a challenge, but special needs requirements can really be a stretch. The Kid-Friendly ADHD & Autism Cookbook by Pamela J. Compart, M.D., and Dana Laake (Fair Winds) is a revised edition that includes scores of child-friendly recipes as well as updated research.
Especially for Children
Magination Press, an imprint of the American Psychological Association, publishes self-help books for children and the adults in their lives, says managing editor Kristine Enderle. “All our picture books have a note to parents, which is what I think really distinguishes us,” she says. “These are written by practicing child psychologists. As part of APA we have a mission to make sure everything is psychologically accurate and relevant.” Book topics range from anxieties and emotions to health and medical concerns, life skills, special needs and other issues.
Magination Press has reissued two “classic ADHD books,” Putting on the Brakes and The Putting on the Brakes Activity Book for Kids with ADD or ADHD, both written by Patricia O. Quinn, M.D., and Judith M. Stern, illus. by Joe Lee. A new title, Attention, Girls! A Guide to Learn All About Your AD/HD by Patricia O. Quinn, M.D., illus. by Carl Pearce, is packed with useful tools to help girls understand ADHD and organize their lives.
Autism and Me Sibling Stories by Ouisie Shapiro, photos by Steven Vote (Albert Whitman), features photos and interviews with siblings who discuss the bonds of families living with autism. Michelle Bayuk, director of marketing, says the book has been very well received. Within its rainbow of children's books, Whitman offers a number of back titles on the subject of autism, asthma, food allergies and other issues.
The Healing Touch
As Isaacson writes in The Horse Boy, whether his son can be cured isn't really the question, but whether he can be healed is of vital concern, as it would be to any special needs family. The fact that there are so many avenues opening up to parents of special needs kids gives hope—a kind of healing in itself.
Speaking for the 200,000 constituents of Autism Society of America, Colston says, “We hear again and again that parents are struggling—they've given everything up, given up homes, jobs, mortgaged this or that. We want them to know that you don't have to give everything up. You do have to do things differently, but you can dare to dream about your child again.”
Everyone knows books can help with that.