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Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Symdrome

Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Symdrome

4.9 23
by Jennifer Graf Groneberg

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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


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.

Editorial Reviews

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 2007Reed Business Information
School Library Journal

Inspired by "Welcome to Holland," Emily Perl Kingsley's 1987 essay about her experiences raising a special-needs child, Groneberg here shares her own story, which begins with her unexpected early delivery of twin boys, Avery and Bennett; it continues with Avery's being diagnosed with Down syndrome five days later and follows her from there. As she narrates her disorienting experience ("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..."), we are drawn in by her candid revelations about the emotions and other discoveries she encounters along the way. Groneberg explores the pain of sharing the news with friends and family-not everyone is able to look past the diagnosis and see the wonder of Avery. She includes an extensive bibliography, a glossary of terms, and resources for parents who might find themselves in a similar situation. A beautiful book full of insight into life with Down syndrome, this recounts a trip that did not go according to plan but turned out to be perfect after all. Highly recommended.
—Lisa M. Jordan

Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

Product Details

Penguin Publishing Group
Publication date:
Sales rank:
Product dimensions:
5.50(w) x 8.20(h) x 0.70(d)
Age Range:
18 Years

Meet the Author

Jennifer Graf Groneberg's exceptional memoir Road Map to Holland: How I Found My Way Through My Son's First Two Year's with Down Syndrome provides practical insight and emotional support to parents of children with special needs. Graf Groneberg is also the editor of My Heart's First Steps: Writings That Celebrate the Gifts of Parenthood and is a contributor to anthologies such as The Maternal is Political, Car Seat on a Camel, Gifts: Mothers Reflect on How Children with Down Syndrome Have Enriched Their Lives, Woven on the Wind and Crazy Woman Creek. Her essays have appeared in Baby Talk, Child, Parents, Parenting, Mothering and Midwifery Today. She lives and writes at the foot of the Crazy Mountains in central Montana with her husband, author Tom Groneberg, and their three sons.

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Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Symdrome 5 out of 5 based on 0 ratings. 23 reviews.
Guest More than 1 year ago
This book took my breath away with its factual, emotional, and honest capturing of the journey through the birth, diagnosis, and early growth of a child with Down syndrome. Groneberg clearly displays the confusion, guilt, exhaustion, fear, and (later) unparalleled joy that the news, 'Your baby has Down syndrome' brings. I hope that all new parents of babies with DS will read this book and find validation, encouragement, and most of all hope as they walk through the initial maze of doctors' offices, therapy appointments and stacks of insurance papers. Groneberg rightly emphasizes that the delights and treasures brought to their family by their son with DS makes it all worth it.
Guest More than 1 year ago
This book of many stories touched my heart. Tears appeared frequently along with smiles as the author took my hand in hers along her journey. Honesty, realization of truth, acceptance and loving compassion shown by Jennifer, Mother, Wife, Daughter, Sister and Friend is truly remarkable. It would be my privilege to call her friend. Buy and share this read.
Guest More than 1 year ago
I've read many books since my son was born with Down syndrome. Only this book and 'Gifts' have I found genuinely inspirational. Not only is the writing beautiful, but it is genuinely comforting to share the thoughts of someone who has already walked your path and made the conscious decision to make the journey a little easier for you. I smiled, laughed, frowned and cried. Ultimately the book carries a message of hope and love that stays with you long after you have finished reading it.
Guest More than 1 year ago
This book takes people on the wide range of emotions you can experience while raising your child with any type of disability. You see that it's ok to mourn, it's ok to have bad days, but that soon they will be far out shadowed by the good days. That smiles and happiness and dreams and aspirations will come back. That because your child isn't 'what you expected' life can and will still be good. Way to go JGG, way to go!
Guest More than 1 year ago
For those who don't know Jennifer, she is mom to Carter, and twins Avery and Bennett. Her writing takes us through the twins' premature birth, NICU stay, and Avery's Down syndrome diagnosis in such vivid detail and emotion that you feel like you are right there with her along for the journey. She explores her thoughts and feelings with such candor - dealing with your child's diagnosis - especially one you weren't expecting - is never easy. Jennifer shows how she worked through her family's new dynamics, trying to figure out what this meant for her and them, one day at a time. Jennifer writes with such passion and honesty. She doesn't hold back or try to sugar coat her feelings and emotions. Reading her story brought me back to receiving Kayla's diagnosis and it made me realize how far I've come as well. I could identify with so much of what she wrote. I read the chapter when Avery had an evaluation for services and had to chuckle. I remember some of Kayla's evaluations and the questions 'does she do this or that?' and I would think to myself - I didn't know she was supposed to be doing this or that or we would have been working on it. If I could just get a list of the questions for the next eval I'll know what to work on! I think just about any parent dealing with a diagnosis for their child could identify with Jennifer's story, and that's what new parents need. A book just like this. A book that will be honest with the ups and downs, that will show other parents they aren't alone. A book that will make you say 'I feel like that too!' A book that will make you realize the sadness and fear of the unknown won't last forever and that there is a light at the end of the tunnel. This is an amazingly powerful story of love, hope, and motherhood. Anyone would enjoy this book -whether you're dealing with a diagnosis 'Down syndrome, or otherwise' or not. It's a story that will touch you, and one you won't soon forget.
Guest More than 1 year ago
My daughter was diagnosed at birth with Down Syndrome. As it came as a surprise and was a little overwhelming, I found advice and comfort in personal blogs of mothers who had also received an unexpected gift. I was able to overcome my doubts and fears of raising a child with a disability by reading other accounts of families who had walked in our shoes so gracefully. This is a very powerful story for those families that are welcoming a new child into their lives!!!
Guest More than 1 year ago
This book isn't just for moms who have children with Down syndrome. It is for anybody who has ever had life veer onto another path. Groneberg's beautifully crafted book is for anybody on an unexpected journey. The writing in Roadmap is astounding - you'll feel like you are sitting in the author's living room listening to her weave a tale. It is a story of broken and mended hearts, and for finding gifts in the most surprising places - kind of like life itself.
Guest More than 1 year ago
I can't help but feel this book should be handed out to all new parents¿particularly those who are coming to terms with the idea that their child may have differences of some kind. Yes, Jennifer writes here about her own journey of acceptance into her son Avery's diagnosis of down syndrome, but the stories she tells, the emotions she struggles with and the path she follows are, in many ways, universal to parenting any child. Jennifer's writing style is lyrical and she touches readers with her honesty. She is not afraid to say what is truly in her heart, to lay out her fear and her despair, and yet, she does this in a way that leaves one feeling hopeful and inspired. Jennifer finds her inner strength and shares with readers her truly remarkable family and the details of their lives. This book is a gem. One that goes a long way toward dispelling the myths and the stereotypes of down syndrome, and parenting a child with special needs. I highly recommend this title.
Guest More than 1 year ago
Though I have a child with Down syndrome who is not an infact and I didn't just get a fresh diagnosis, this book is truly amazing. Jennifer describes in detail her thoughts and emotions as she goes through pre-term labour and a disgnosis many parents are not expecting or even want to hear. The vivid description of how our children are treated differently by medical professionals who should know better. Finding our who your true friends are. These are all experiences that we as parents will have to go through.
Guest More than 1 year ago
Parenting a child with Down syndrome is a special and unique experience, which Jennifer captures in a moving way. My husband & I both read this book and were touched by how deeply emotional Jennifer's story is, and how much we could relate to it. Not only would I recommend this book for someone who loves a person with Down syndrome - or is expecting a child with DS - but any parent could relate to the love Jennifer has for her boys. This book gave me goosebumps so many times. I greatly admire Jennifer's honesty - and I'm in awe of her use of words.
Guest More than 1 year ago
A page turner right from the start. A must read for all parents and professionals alike. You won't be disappointed. Reads like a novel, but truly a resource.
Guest More than 1 year ago
I highly recommend this book, especially for new parents of a child with Down syndrome, but generally, for anyone who has ever found themselves in the world of special needs, even if only for a visit. The author writes well. By the end of the book, you'll want to stop by her house for a cup of coffee. I loved this read!
Guest More than 1 year ago
This is the book that all new parents (or those with a prenatal diagnosis) should be given. So many texts are full of scary facts and overwhelming information. Road Map to Holland is an honest and heartwarming look at the roller coaster of emotions that come with being a new parent to a child with Down Syndrome. It's a wonderful story of falling in love with your child and seeing past a diagnosis.
Guest More than 1 year ago
I could not put down this book. It is amazing. Road Map to Holland is the story of Jennifer Graf Groneberg's journey through the first two years of her son Avery¿s life. It is an unflinchingly honest look of what it was like to receive his diagnosis of Down syndrome, and how it affected her. The book is a wonderful testament in that what you think could be one of the worst things you¿d ever go through could, in reality, be something absolutely wonderful. One of my favorite lines from the book is, 'He's the child that I wanted, that I did not know I wanted.' I wish every woman would read this book. So many times, abnormal results from prenatal tests are presented in the bleakest terms possible. And yet, I think there are many instances in which an unwelcome diagnosis is not at all representative of the actual child who is born. Road Map to Holland might be a scary book to read when you're pregnant, because it makes you think about things that are difficult to contemplate. Yet it offers so much hope and inspiration. I did not know 92% of women who receive a prenatal diagnosis of Down syndrome will abort. That statistic deeply troubles me. I think, and the book makes an excellent case, that if more people were offered an honest picture of Down syndrome, the statistic would not be so high. Road Map to Holland makes you search your soul about what makes a life worth living and what is truly important. I know I will keep it close by, and in the event anyone close to me ever receives a troubling prenatal test result, I will encourage her to read it for the comfort and education it offers. I encourage you to read it too. It really is an inspiration.
Guest More than 1 year ago
I guess I have a spot in my heart that will always be layed bare because of the experiences of this journey. I have been walking this road myself for three years, yet, in only 6 pages it is new again. I had to stop right there and write this review as Jennifer Graf Gronenberg has literally taken my hand and brought me back to the beginning. I always read the first page of a new book as soon as I get it home, to prepare me for the story. I could not stop on page one, I was so invested in Graf Gronenberg's enticing portrayal of what are undescribable emotions and circumstances. I am happy to make this trip again, through the words of the author. This time I know it has a happy ending.
Guest More than 1 year ago
It is almost impossible to give fitting praise for this superb book by Jennifer Graf Groneberg. I don¿t know where to start. Groneberg has been blessed with the rarest of gifts as a writer: She is a brilliant wordsmith, an accomplishment in and of itself yet she is also so beautifully human in her story telling. She is strong, vulnerable, scared, hopeful, flawed, honest, loving, doubtful, humble, and confident. She is all of us. We are with her in the NICU, as she receives the news that her middle son has been diagnosed with Down syndrome, at home with her as she adjusts to her new future, in the lake with her as she imagines that ¿nothing good¿ will come her way again (she of course proves herself gloriously wrong), at Avery¿s physical therapy appointments where her heart breaks and rejoices at the same time as she observes how extra hard her toddler son must work for the smallest of victories. She is not above sharing with us that among some of the unwelcome comments and feelings offered by strangers about her son are also some of her own. She exposes herself so honestly the lows as eloquently described as the highs. Her style is spare but not simple, without an ounce of pretension or preachiness. You will finish the story with joy and hope in your heart, and a deep sense of admiration and love for this family who, at the end of the day, isn¿t so different from yours or mine. Don¿t pass up this ticket. Groneberg has invited us along for this extraordinary part of her journey, and I can only hope that there will be many more stops in the future where we can climb aboard and join her.
courteyyy More than 1 year ago
Road Map to Holland by Jennifer Graf Groneberg is a gift to any reader. Giving an insight on her emotional roller coaster and journey Jennifer tells the story of raising her son who is diagnosed with Down Syndrome. Jennifer and her husband found out Avery, one of the two twin babies, was diagnosed with Down Syndrome five days after they were delivered. Jennifer tells her journey of the first two years of Avery’s life as they deal with doctors, friends, and members of society, some who were extremely kind and helpful and others who were not. We get to see Jennifer and Avery’s bond and love for each other grow stronger throughout this journey. Avery changes Jennifer's life into one that she is proud to call her own. I fell in love with this powerful and relatable book filled with life long lessons. I nanny for a family with a son who has Down Syndrome and this book hit me hard... Not sugar coating anything. It helped me to understand more of what their family is going through, along with ways that I can continue to connect with their son. The honesty and realness that is portrayed through Jennifer's writing is what makes this book so powerful. I felt the pain, joy, and love as though this was my own journey. I am a just a teenage girl  reading this book for a school project yet this book helped me to look at life in a completely different way. I strongly recommend it to every and any one no matter your age or stage of life. It truly touched my heart. 
Jsmile More than 1 year ago
Road Map to Holland, is a honest and heartwarming story about a family dealing with their child with Down Syndrome. This story inspired me because  I want to become a Special Education Teacher to help  the kids out. I learned a lot about how to handle kids that have a disability and love them the same. They are just  like us and we need to treat them with respect. The part that stands out the most is that you feel like you are right by her side going through the ups and downs with her. Also I loved that Jennifer was not sure about how to deal with Avery, but through out the book she learned to love him and make him family. That shows the love and dedication she has towards her family. If you are a parent that has a kid with a disability or going to to be a parent then this book it a great read to show you what life will be like. 
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As a mother to a son who is just turning one and was diagnosed with Down Syndrome this was the 1st book I went to and bought. I was amazed to read a book and connect with the writer in such a way. She talked about all the fears and anxiety that I was feeling at the time. She also described the joy and happiness that I felt. This book is not only a great read for the parents but for the extended family. It helps them understand what we are going through without us having to explain it to them. It gives another mothers perspective that I feel than can relate to.