Book archives

Full Circle of Moms

June 28, 2013 in Book

That moment when a parent finds out that their baby has Down syndrome is etched in their memory forever. For me, isolated images are razor sharp. What I remember is my baby being whisked away to the NICU after delivery; a doctor with curly hair rattling off the symptoms of Down syndrome … something about a crease in the palm, folds in his eyes, and extra space between his toes; my 23-year-old husband crying for the first time since his mom died; and a gentle woman bringing me a book and photos of her son with Down syndrome the next morning.

I have shared that the original inspiration for the Lettercase books was the parent support coordinator at the hospital who showed me a picture of her son on a bike. What I didn’t share was that Nancy’s son passed away from leukemia when he was 15. Josh was an anchor for his parents and brothers and sisters, and he was the inspiration for me on the day after my son was born with Down syndrome. He was funny, adventurous, loving, outgoing, impish, compassionate, and perceptive, and his death left a hole in their family.

On Monday afternoon, Nancy called me to say that her daughter was pregnant and just found out from an ultrasound that the baby has soft markers for Down syndrome. Despite the pain of losing Josh, they were thrilled at the prospect of having another baby with Down syndrome in their family. But, she wanted to make sure her daughter was prepared, just in case, so she asked if I could send her a copy of the the Lettercase “Understanding a Down Syndrome Diagnosis” book and Down Syndrome Pregnancy’s “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”

Thirteen years ago, Nancy shared a vision of the future with me by giving me a book and a photo. She and Josh inspired me to do the same for other expectant parents with our books, and now I have the opportunity to support her daughter. This is the full circle of moms, and it’s just one of the legacies of Josh Boldt.

It’s true that sometimes life with Down syndrome can be downright hard. Almost all of us grow emotional callouses: the first time we see our friend’s baby take their first step before our child; the first time we have to look a teacher hard in the eye at an IEP meeting and tell her our child will be included in a regular classroom and that it can be done; and the first or fiftieth time we hear someone casually toss around the word “retarded.” For a small minority, like Nancy, they cope with health challenges that can be all-consuming.

And yet, 99% of parents say they love their children with Down syndrome, and Nancy and her daughter were excited to find out that the baby has soft markers for Down syndrome — even after battling leukemia for years with Josh.

The thing is that, most of the time, life with Down syndrome is remarkably ordinary and includes family vacations, sibling squabbles, outings with friends, and school activities, with a few extra doses of therapy, annual IEP meetings, health insurance battles, and medical appointments thrown into the mix.

What I’ve learned is that people with Down syndrome are unique individuals with their own strengths and challenges, and this has given me a greater appreciation for the individuality of all people. My son truly struggles with reading and math, but he’s an amazing photographer, an avid mountain biker, and tech wiz like his dad. I’ve also learned that people need information and support right away in a moment of crisis, and the compassion of others can change our lives in profound ways. For that, I’m grateful for the extraordinary full circle of moms, especially Nancy and Josh.

A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny

December 31, 2011 in Book

A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny
by Amy Julia Becker
Book review by Nancy McCrea Iannone

Many of our expectant parents grapple with the grief of a Down syndrome diagnosis. Our visions of our child are shattered, immediately replaced by an image based on whatever we think we know about Down syndrome. With time, and influenced by smiles, giggles, and hugs, that image dissolves, allowing us to see our children for the individuals they are.

Along the way, we often navigate some difficult adjustment terrain. Why has this happened? Why us? Amy Julia Becker delves into these questions and more. Why does her child have Down syndrome? Is it to teach the parents something? Isn’t that a high price to pay on the child’s part? She presents these questions so eloquently, yet her perceptions change as Penny’s personality exerts itself, as her medical possibilities fade.

Often we as parents interact with the world using an external dialogue to help us maintain control, and an internal monologue to express the panic. Ms. Becker’s thoughts are deep and private, taken from a personal journal, the things we never really share with the people around us. She deftly and gently recounts the comments from others that leave her hurt, but does not spare herself from critique, questioning her own preconceived impressions and biases.

When Ms. Becker hears comments intended to comfort, such as, “She’s not really that different” her brain protests: “They hadn’t cried in the hospital. They hadn’t come home with information on support groups and questions about life expectancy. They didn’t need to report back for a blood draw on the fifth day of their baby’s life. They didn’t have the pediatrician calling daily, just to check in.” Yet verbally she keeps her game face on: “We’re okay. She’s healthy and we’re happy and it’s all good.” She doesn’t share the fear.

While comments “normalizing” her experiences are met with mental protest, comments making Penny’s birth a tragedy also trigger painful internal monologue. At first this reaction seems a resistance to pity, but as Penny grows, it is much more about Penny herself. When faced with intrusive questions over prenatal testing of a subsequent pregnancy, Ms. Becker reflects, ” I wanted to . . . shake her. I wanted to force her to spend a day with Penny, to watch as Penny told me what she did at school, and the names of her friends, and what she would like for her afternoon snack.”

Ms. Becker is forced to look at her own life, particularly on her focus on and appreciation of intellect. Unlike her sisters, she had never been involved with people with disabilities. Early on the Down syndrome diagnosis seems like something that happened to their daughter, separate, apart, negative. These thoughts evolve: “To take away Down syndrome would be to take away my daughter.”

It may be difficult for our expectant parents to see their children and Down syndrome this way. You have not walked the path Ms. Becker has walked – not yet. But reading this book will bring you the hope that you will be there some day, not reading about someone else’s transformation, but reflecting on your own. You may see much of yourself in Ms. Becker’s book. Though an exploration of her faith is an important part of her story, a parent does not have to share her faith to gain perspective from reading this thoughtful, eloquent story of self-reflection and growth.

Purchase the book:
http://www.amazon.com/Good-Perfect-Gift-Expectations-Little/dp/0764209175/ref=sr_1_1?ie=UTF8&qid=1319744742&sr=8-1

Down Syndrome Parenting 101 by Natalie Hale

December 31, 2011 in Book

Down Syndrome Parenting 101: Must-Have Advice For Making Your Life Easier
by Natalie Hale
forward by Martha Beck

review by Nancy McCrea Iannone

Every night, my daughter and I read Natalie Hale’s children’s book I Love Spaghetti. Actually, my daughter Gabby reads it to me, and we laugh about the girl kissing, hugging, and wearing spaghetti.

Reading Ms. Hale’s new book is a completely different experience. Ms. Hale now talks to us directly, parent-to-parent, sharing her experience as a parent, a teacher, an advocate, and a member of “the club,” the Down Syndrome Community.

Ms. Hale uses vignettes to illustrate, to entertain, to inspire, and to amaze the reader.
As a parent, Ms. Hale wrote down snippets of her life with her child Jonathon, who has Down syndrome. She weaves those snippets of their lives, along with the snippets from other people’s experiences, into this parenting handbook. Having been raised on “Keith stories” (tales of a family friend who has Down syndrome), I appreciate so much the behind-the-scenes peek into the clever, funny, surprising things our kids with Down syndrome say. Personal anecdotes help us see how ideas are implemented, why some steps do not work, and remind us of the personalities, the people, behind “techniques.”

Ms. Hale also provides organized advice, personal reflections, and explanations to educate parents on a variety of topics. From the simple “listen to your mommy gut” and “do whatever works” to the detailed step-by-step instructions on how to handle “the noncompliance face-off,” Ms. Hale guides the reader through the myriad of issues parents of children with Down syndrome face.

Full of practical, detailed instructions, parents will walk away with valuable advice on handling behaviors, teaching reading, interacting with medical professionals, coping with the school system, and so much more. But woven throughout is the message that you will be delighted with your child’s unique personality and way of viewing the world.

Buy the book:
http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-60613-020-9

Welcome expectant parents!

November 12, 2010 in Blog, Book, Diagnosis, Emotions

Congratulations on your pregnancy, and welcome to our community. If you have just received a confirmed or suspected diagnosis, you may be feeling very afraid, alone, and overwhelmed. We offer information that can help.

1. A free downloadable Down syndrome pregnancy book.  (Suggested $10 donation.) Buy the printed version HERE (Woodbine House).

2. A blog on our home page.  The current post is always on the front page, and you can also search by categories.

3. Open dialogue on Baby Center’s Down syndrome pregnancy board.  This is a public board not owned by us, but our own Nancy, Missy, and Amy are there on a daily basis to answer questions, provide comfort, and facilitate peer support.

4.  Valuable supplemental information in our Resources section.

We’re here to help you on this journey, prepare you for the immediate future, and give you hope.  Feel free to contact Stephanie privately if you wish at stephanie.meredith@uky.edu.

DownSyndromePregancy.org is administered as part of the National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky’s Human Development Institute (HDI).

People are talking

October 22, 2010 in Blog, Book

We love the chatter we’ve been seeing about our book and website on facebook, e-mail, discussion boards, and blogs.  The more you talk about us, the more likely expectant parents in need of information will find us.  So please, keep talking!  If you would like to see what some people are saying, take a look:

Jennifer Margulis over at the Mothering blog talks about our Stephanie Meredith, both as coauthor of Diagnosis to Delivery and executive director of Lettercase.  She also talks about the new prenatal testing on the horizon.

Special Needs Children Editor Pam Wilson of Bellaonline discusses the new resources for parents, including our website and book (which she calls “outstanding!”) and Stephanie’s booklets available through Lettercase.

One Speech and Language Pathologist at the Thomas Center for Down Syndrome in Cincinnatti, blogs that our book is “absolutely outstanding.”  She goes on to list a variety of people who should read our book, including medical professionals and students.

Nancy McCrea Iannone’s local newspaper published an informational piece on the book and website.

Gillian Marchenko is spreading the word on the Chicago Special Needs Parents Examiner.

And speaking of parents, they are sharing through their blogs.  Here is a sampling:

Our photographer Kelle Hampton (“The individuals who created it passionately put their hearts and souls into something that is beautiful, informative and, I imagine, an incredible guide in navigating the intimidating waters of the first steps of acceptance.”)

Our photographer Conny Wenk (“CONGRATULATIONS, Nancy and Stephanie for putting so much work and effort into this invaluable book!!!)

Bill and Ria (“wonderful, incredible, comprehensive . . ., practical, compassionate, . . . and easy-to-follow”)

Barbara Curtis at Mommy Life

Becca at the Bates Motel (“amazing, long over-due”)

Jess at Raising Joey

Erin at Ski’ing Through Life (with absolutely gorgeous photo of Grady and his dad) (“I wish I had this when I was pregnant.”)

Jennie at A Little Something Extra for Us (“FABULOUS”)

Qadoshyah at Got Down Syndrome (with some extra cute Kelle Hampton and Conny Wenk photos)

Our friends on the other side of the world are also talking.  Keeping Up with Down Syndrome is a blog for the Down syndrome group in New South Wales, Australia.  (Even if many parts are not relevant outside of the U.S., it is still “good, well researched information.”)

Keep the conversation flowing!  And bring some of it to our blog – our expectant parents could benefit from a variety of perspectives.

Some kind words from our favorite writers

October 8, 2010 in Book

We have received so many e-mails, and we truly appreciate every message. We would like to share those that come from mothers who brought personal stories about people with Down syndrome to new parents everywhere. 

“I wish this resource had been available when my son, Thomas, arrived five years ago. It provides exactly what I wished for but could not find: informed, practical, and compassionate guidance in vital matters regarding the well-being of a family newly touched by Down syndrome. With warmth and knowledge born of experience, the authors shed light into the shadowy time when the difficulties of parenting a child with special needs loom large, and the rewards have not yet been discovered. ”

– Kathryn Lynard Soper, author of:

Gifts, Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

Gifts 2, How People with Down Syndrome Enrich the World

The Year My Son and I Were Born

“What a treat it was to read Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.  I found myself nodding my head in agreement, and laughing, and smiling, and yes, there were even some tears, because it’s that kind of book.  A book that inspires all sorts of emotions, and most importantly, gives help and hope in full measure.  I love so many things about it:  I love the clear, straightforward language; I love the book’s scope (a perfect blend of just enough insight, without being overwhelming); I love the self-talk we all have (what we say out loud, versus what we are thinking in our heads!); I love the resources you’ve included, and I especially love the photos, because sometimes, a picture is worth even more than a thousand words.

-Jennifer Graf Groneberg, author of Road Map to Holland:  How I Found My Way Through My Son’s First Two Years with Down Syndrome

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