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

4.6 4.6 out of 5 stars 88 ratings

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An exceptional memoir that provides emotional insight and practical advice.

It's like planning a trip to Italy, only to get off the plane and discover you're actually in Holland. You need a new road map, and fast...

When Jennifer Groneberg and her husband learned they'd be having twin boys, their main concern was whether they'd need an addition on their house. Then, five days after Avery and Bennett were born, Avery was diagnosed with Down syndrome.

Here, Jennifer shares the story of what followed. She dealt with doctors-some who helped, and some who were disrespectful or even dangerous. She saw some relationships in her life grow stronger, while severing ties with people who proved unsupportive. And she continues to struggle to find balance in the hardships and joys of raising a child with special needs. This book is a resource, a companion for parents, and above all, a story of the love between a mother and her son-as she learns that Avery is exactly the child she never knew she wanted.
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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.)
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

Review

?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

aRich 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 Averyas 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.a
aKim Edwards, author of "The Memory Keeperas Daughter"
aI have been ato Hollanda 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. Itas good to be able to see the potholes coming and be ready for them, and itas 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!a
aMartha 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"
aWhat a remarkable book! With excruciating candor and exquisite generosity, Jennifer Graf Groneberg invites us into the deepest privacyof 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.a
aEmily Perl Kingsley, national spokesperson and advocate for people with disabilities and author of ""Welcome to Holland""
aThis is the story of Averyaa child with Down syndrome who transformed his motheras broken heart into one filled with cheer, awe, and pride. He offers all new and expectant parents a powerful perspective on lifeas greatest lessons.a
aBrian Skotko, M.D., M.P.P., Childrenas Hospital Boston & Boston Medical Center.
aBursting with hope, Gronebergas 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.a
aKathryn Lynard Soper, editor of "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives"

"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 privacyof 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"

Product details

  • Publisher ‏ : ‎ Berkley; 1st edition (April 1, 2008)
  • Language ‏ : ‎ English
  • Paperback ‏ : ‎ 292 pages
  • ISBN-10 ‏ : ‎ 0451222954
  • ISBN-13 ‏ : ‎ 978-0451222954
  • Item Weight ‏ : ‎ 8.8 ounces
  • Dimensions ‏ : ‎ 5.5 x 0.8 x 8.2 inches
  • Customer Reviews:
    4.6 4.6 out of 5 stars 88 ratings

About the author

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Jennifer Graf Groneberg
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I have a website at jennifergrafgroneberg.com and a blog, Pinwheels (http://jennifergrafgroneberg.wordpress.com)

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

Customer reviews

4.6 out of 5 stars
88 global ratings

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Customers say

Customers find the book relatable and helpful for understanding their feelings. They appreciate the author's honest account of her struggles as a mother. The writing quality is good, with clear explanations and descriptions. Readers appreciate the family perspective and find the content an excellent resource for new parents.

AI-generated from the text of customer reviews

12 customers mention "Relatability"12 positive0 negative

Customers find the book relatable and helpful for parents. They appreciate the author's honest account of a mother's struggles. The book is described as informative, inspiring, and well-told.

"...While this book certainly gives you plenty of information on Down syndrome, it's really all about family...." Read more

"...That would be so much more informative, inspirational, AND ACCURATE than the dry book the geneticist gave us...." Read more

"As a mother of a child who has Down syndrome, I appreciate the insights and honesty in the book Roadmap to Holland...." Read more

"...Groneberg does an exceptional job at relating her story to the reader. We feel her ups and downs as if it were happening to our own family...." Read more

8 customers mention "Writing quality"8 positive0 negative

Customers appreciate the writing quality. They find the story well-told, with clear explanations and descriptions that capture feelings.

"...Jennifer Groneberg is an extremely talented writer, who is so obviously in love with her family that you almost wish you were a relative...." Read more

"...I stumbled across this book and am so glad I did! The writing was superb. I felt both her pain and her joy...." Read more

"...I hope we get to read more from Jennifer Groneberg, she has a clarity of thought that enables her to explain things that sometimes people have..." Read more

"...Such beautiful, expressive writing. Jen has a wonderful gift. I can't recommend it enough, whether or not you know someone with Down's Syndrome." Read more

4 customers mention "Family life"4 positive0 negative

Customers appreciate the book's focus on family life. They find it helpful for new mothers and say it's a must-have for parents of children with Down syndrome.

"...gives you plenty of information on Down syndrome, it's really all about family. This book should be filed under family and under memoirs too...." Read more

"...This book is a must have for new parents of children with DS. I couldn't put the book down and shed many a tear as I walked this path with her." Read more

"...It gave a clear understanding and parental perspective of a NICU and early intervention." Read more

"Great for new moms..." Read more

3 customers mention "Book content"3 positive0 negative

Customers find the book content helpful and an excellent resource.

"...A lot of great resources. It was amazing to know some one else had the same feelings I had & I am not crazy for feeling the way I do...." Read more

"Excellent Resource..." Read more

"so helpful..." Read more

Top reviews from the United States

  • Reviewed in the United States on April 24, 2009
    The subtitle is perhaps a bit misleading. While this book certainly gives you plenty of information on Down syndrome, it's really all about family. This book should be filed under family and under memoirs too. Jennifer Groneberg is an extremely talented writer, who is so obviously in love with her family that you almost wish you were a relative. The book is brutally honest however. She does not shrink from telling you about the doubts and fears she experienced upon learning of her son's condition, but what shines through the strongest is the love. The Gronebergs are people I'd like to know, to have as friends or neighbors. I recommend this book highly. You don't have to have a Down syndrome kid to appreciate it. You just have to like good writing and a well-told story. - Tim Bazzett, author of Pinhead: A Love Story
    8 people found this helpful
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  • Reviewed in the United States on June 8, 2019
    I was interested in the trip to Holland from another book i was reading. I stumbled across this book and am so glad I did! The writing was superb. I felt both her pain and her joy. I felt her insecurities and her accomplishments. Mostly I felt her love. I rarely write a review, but this book deserves it. One of the best books i have read in a long time (and I read at least a book a week). To the author, thank you!
    2 people found this helpful
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  • Reviewed in the United States on February 5, 2009
    What is there not to love about this book? That photo on the cover says it all: life with kids like her Avery (and my son) can be so full of joy. I wish that everyone who got a diagnosis that their child has Down syndrome, whether a prenatal diagnosis or after the baby is born, would also be handed a copy of this book and "Gifts" (which Jennifer Graf Groneberg contributed to). That would be so much more informative, inspirational, AND ACCURATE than the dry book the geneticist gave us.

    Thank you for sharing your story and your boys with the world, Jennifer. It's a better place for it.
    5 people found this helpful
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  • Reviewed in the United States on April 21, 2020
    As a mother of a child who has Down syndrome, I appreciate the insights and honesty in the book Roadmap to Holland. The author shares the first few years of her journey with candor. It is very relatable and I would recommend this read for parents starting their own journey into Holland. I would love to read how she and her child are doing today.
    2 people found this helpful
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  • Reviewed in the United States on November 23, 2012
    Jennifer Groneberg shares all her feelings about having a Down Syndrome child; the concern, worries, cares, fear, etc. All of these are overcome by the courage and love of she and her husband. This child has a bright future and will achieve more than the generation of Down Syndrome children before him, because the level of acceptance and understanding that disabled people can learn. They have a distinct brightness unique to them. I have a DS son who is now 52. Many avenues and therapy advantages were not open or available to him. Not enough was known then. He has done really well. I bought the book in the Kindle edition. When I finished it, I noticed all the reference sources. I will be buying the book on paper, in order to have reference to it. I hope we get to read more from Jennifer Groneberg, she has a clarity of thought that enables her to explain things that sometimes people have difficulty understanding.
    2 people found this helpful
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  • Reviewed in the United States on August 10, 2012
    This book started slow for me because of the back & forth from before her baby was born to after. Once I got past that first part I found this book very helpful. A lot of great resources. It was amazing to know some one else had the same feelings I had & I am not crazy for feeling the way I do. I wish I has read this sooner maybe even before my son was born since we all ready had a diagnosis. This would have been a much better book to give me w/ the diagnosis than the ones that were suggested to me.
    2 people found this helpful
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  • Reviewed in the United States on April 20, 2013
    I cannot recommend this book enough! Groneberg does an exceptional job at relating her story to the reader. We feel her ups and downs as if it were happening to our own family. I am impressed that Groneberg shared her true feelings and life of her family after the diagnosis of her son Avery's diagnosis. The struggles were heart wrenching, yet I was so thankful to read about how they function as a wonderful family then and now as the boys all grow. You are a remarkable woman, writer and mother Jennifer, the boys and your husband Tom are lucky to have you. Keep up the great work.
  • Reviewed in the United States on May 15, 2021
    This impressive book chronicles Jen Graf Groneberg and her family's first two years raising her son who has Down's Syndrome in Montana. Such beautiful, expressive writing. Jen has a wonderful gift. I can't recommend it enough, whether or not you know someone with Down's Syndrome.
    One person found this helpful
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Top reviews from other countries

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  • Amazon Kunde
    2.0 out of 5 stars Nicht überzeugend
    Reviewed in Germany on January 13, 2015
    Ich habe selbst einen Sohn mit Downsyndrom und lese daher viel zum Thema. Dieser Erfahrungsbericht hat mich nicht überzeugend. Zwei Sterne gibt es für die gute Schreibweise und das letzte Kapitel. Aber das Buch lässt mich ratlos zurück: Ich habe weder ein Bild von Avery, dem Sohn mit DS, im Kopf, noch eine Vorstellung davon, wie die Autorin jetzt zum Thema DS steht. Vielmehr bekommt sie die Diagnose am Anfang des Buches, dann wird ihr stressiger Alltag mit drei Kindern beschrieben und die AUSEINANDERSETZUNG mit dem Thema DS und Behinderung erfolgt nur darüber, dass sie uns die Therapien darlegt. Dass sie ihren Sohn liebt kommt erst im letzten Kapitel so richtig heraus. Es gibt andere Bücher zum Thema Behinderung, die auch Mut machen. Mein Favorit: "Lotta Wundertüte" - hier geht es zwar nicht um DS, aber viele Aspekte des Buches lassen sich auch hierauf transferieren.
  • Marilyn Lucas
    5.0 out of 5 stars Poignant journey
    Reviewed in the United Kingdom on October 11, 2013
    An honest and well written account of the feelings associated with discovering that one of your precious babies is going to be 'different' and how you start the ongoing journey to life with your delightful but different child.
    One person found this helpful
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  • Caroline
    5.0 out of 5 stars Good read
    Reviewed in the United Kingdom on April 22, 2012
    I bought this book not long after my son was born, with DS, its a lovely positive yet truthful book on what life is like with a baby with Downs syndrome.
    One person found this helpful
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  • Mrs. A. L. Barnes
    4.0 out of 5 stars I would love to read of a similar experience from a British ...
    Reviewed in the United Kingdom on October 4, 2014
    Bought two copies - one for me and one for my daughter who is expecting a baby with Downs Syndrome. I found it was very sensitively written from the mother's perspective and we could identify with her feelings. Slightly repetitive in places but hard to put down. I would love to read of a similar experience from a British mother because the health service, support, therapies and hospital system in the USA recorded in this book are very different from the British system.