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Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome Paperback – Bargain Price, April 1, 2008

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Editorial Reviews

From Publishers Weekly

Montana wife and mother Groneberg traces in her tenderly moving account the life-changing realization after the premature birth of her twin boys that one of them, Avery, has Down syndrome. Utterly unprepared for the emergency C-section of the seven-week-early preemies, Groneberg and her writer husband, Tom, the parents of a four-year-old, are devastated by the news about Avery, and they must gradually alter their easygoing future plans about raising their kids. They reject the notion of adoption, suggested by a well-intentioned nurse at the hospital where the babies are ensconced in the neonatal intensive-care unit, and embark on an exhaustively trying, ultimately enlightening journey to care for the needy babies, especially Avery, and educate themselves about his condition. Rising from the shame of feeling that their family is broken, and letting slide hurtful comments by a grocery-store clerk or neighbor, Groneberg devoured books and information from the Internet, and began to foster their son's development by seeking out physical therapists and specialists. Small gains in Avery's motor skills were causes for celebration, and the beginning of speech the greatest gift the parents could ask for. Groneberg affectingly delineates these gradual, hard-won stages during Avery's first year toward love and acceptance. (Apr.)
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“Rich with honesty, wisdom, and a deep appreciation for every day miracles, Road Map to Holland is a thoughtful, moving meditation on the struggles and joys Jennifer Graf Groneberg and her family experienced during her son Avery’s first two years. Groneberg offers a wealth of insight, information, and even practical resources for families whose children have Down syndrome. Yet this book is first and foremost a story about the constant discovery of love, and it will resonate with every reader who has traveled the always unpredictable, often overwhelming, wonder-filled journey into parenthood.”
—Kim Edwards, author of The Memory Keeper’s Daughter

“I have been ‘to Holland’ for eighteen years now, and this book brought back so many thoughts and feelings I had saved up that I felt an immediate sisterhood with Jennifer. I watched her deal with that same fear of the unknown that singed my heart, and I wept when she reached that crucial moment when she found that same place of self-forgiveness. No matter who or where you are in relation to a child with Down syndrome, these pages will be like signposts along your road, to give hope and a new way of seeing things. It’s good to be able to see the potholes coming and be ready for them, and it’s good to know when to pull over and take the time to enjoy the breathtaking views that only happen on this road. Thank goodness for road maps!”
—Martha Sears, coauthor, The Baby Book: Everything You Need to Know About Your Baby From Birth to Age Two and author, 25 Things Every New Mother Should Know

“What a remarkable book! With excruciating candor and exquisite generosity, Jennifer Graf Groneberg invites us into the deepest privacy of her innermost thoughts, feelings, fears, challenges and triumphs. Nothing is left out in this amazingly intimate and profound journal. She allows us into every nook and cranny of her life and we find ourselves firmly ensconced in her heart.”
—Emily Perl Kingsley, national spokesperson and advocate for people with disabilities and author of "Welcome to Holland"

“This is the story of Avery—a child with Down syndrome who transformed his mother’s broken heart into one filled with cheer, awe, and pride. He offers all new and expectant parents a powerful perspective on life’s greatest lessons.”
—Brian Skotko, M.D., M.P.P., Children’s Hospital Boston & Boston Medical Center.

“Bursting with hope, Groneberg’s account of mothering Avery highlights the triumph of love over fear. Its candid, vivid prose and poignant emotion make the story is difficult to put down and impossible to forget. Herein lies truth to be pondered and savored by every mother, every woman, every human being.”
—Kathryn Lynard Soper, editor of Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

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Product Details

  • Paperback: 292 pages
  • Publisher: NAL Trade; 1 edition (April 1, 2008)
  • Language: English
  • ISBN-10: 0451222954
  • ISBN-13: 978-0451222954
  • Product Dimensions: 5.6 x 0.6 x 8.2 inches
  • Shipping Weight: 4.8 ounces
  • Average Customer Review: 4.0 out of 5 stars  See all reviews (10 customer reviews)
  • Amazon Best Sellers Rank: #497,898 in Books (See Top 100 in Books)

More About the Author

I have a website at and a blog, Pinwheels (

You can reach me by email at jennifer (at) jennifergrafgroneberg (dot) com.

Customer Reviews

Most Helpful Customer Reviews

4 of 4 people found the following review helpful By Leticia Velasquez on December 6, 2008
Format: Paperback
Those of us who give birth to children with Down syndrome have been likened to travelers to Italy who find that their plane unexpectedly lands in Holland. The title "Roadmap to Holland" is a reference to that famous essay by Emily Perl Kingsley, who worked for decades writing for Sesame Street and whose son Jason has Down syndrome.
She has for generations provided this invaluable wisdom for new parents of children with Down syndrome. In "Roadmap to Holland" we meet Jennifer, a new and compassionate companion on our journey raising a child who is both very different, and yet surprisingly similar to our other children.

Jennifer and her husband Tom had the perfect life; both writers, they lived on a peninsula on a lake in Montana; they worked in their home office down the hill from their home, surrounded by peace and tranquility of nature. Their life was enlivened by the joy of a young son, Carter. Just what inspired them to test fate by conceiving again? This question kept returning to Jennifer's mind as the difficulties in her journey to Holland began to reveal themselves. Twin boys, Bennett and Avery and were born seven weeks premature with the daunting possibility of lifelong repercussions. Just when Jennifer thought the news couldn't get worse, she was informed that Avery, her little blue-eyed boy with a full head of blond hair, had Trisomy 21, an extra 21st chromosome. Jennifer's first reaction, like so many, was an urge to flee, leaving all the fears behind. She, however being the valiant woman she is, stayed the course, and, for months commuted to the hospital, pumping her milk round the clock, holding her babies by turns, caring for her older son, longing for a full night's sleep, until, finally, her little boys came home, one by one to the little house by the lake.
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5 of 6 people found the following review helpful By Lois Lain VINE VOICE on August 28, 2009
Format: Paperback
There is no Down syndrome among my family or immediate friends, but Jennifer Graf Groneberg's book showed that EVERYONE is touched by Down syndrome. It put a personal face on what before was just a "nightmare diagnosis," one you don't want to have happen to you.

I appreciated Jennifer's honesty and openness, with her fears and struggles as well as her triumphs. I loved the emphasis on what her boys had in common rather than the ways in which Avery was so different.

The only criticism is that I would have liked to know what her life was like BEFORE one of her twins was diagnosed... it was hard to relate to the "after" when I didn't know how much change it brought to her life.
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2 of 2 people found the following review helpful By P.J. Heeran on December 29, 2008
Format: Paperback Verified Purchase
JGG gives such a wonderful, detailed description of her journey to "Holland" when she finds out that one of her twins has Down syndrome. As a mother of a child who has Down syndrome, I LOVED this book! I highly suggest it to any parent or a family member of a child with DS.
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1 of 1 people found the following review helpful By S. McKinney on April 22, 2010
Format: Paperback
I really enjoyed this book. Jennifer not only covered her personal story -- and Avery's -- but also told us about learning to manage family life with three small children, about Avery's different therapies and what they were intended to accomplish. I particularly appreciated the parts where she described -how- the therapist moved Avery on the big ball and -how- Jennifer and the therapist began teaching Avery to sign. I also loved the coffee-container toy and the recipe for lemon chicken!

There's an extensive list of books for adults, books for older and younger children (both children with DS and brothers and sisters), DVDs, websites, national is an extremely helpful list of resources, not to mention the addition of the touching essay "Welcome to Holland" by Emily Perl Kingsley. There are also chapter notes and a glossary of commonly used terms that were largely new to me. These were very thoughtful and helpful inclusions.

"Road Map to Holland" is a really well-written book. It's hard to read sometimes, it really is. The emotions expressed are so raw and painful. But through all the pain, there is a thread of hope that begins to run through Jennifer's narrative as she and Tom struggle through Avery's diagnosis and finding help for him, working with him, loving him. Their courage is both humbling and inspiring.

I originally checked this book out of the public library because of my new godson, who was diagnosed with DS. I thought it would help me understand some fundamentals and then I'd return it, glad about the knowledge I'd gained. But now I've decided that I have to own a copy: I've found I simply can't return it. It means too much to me.
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2 of 2 people found the following review helpful By Kelli on January 7, 2009
Format: Paperback
As a new mom to a baby with Down syndrome this book was really inspiring and uplifting.
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