Archive for December, 2011

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

Why I love DSP- from a “graduate”

December 3, 2011 in Support

Every day at Down Syndrome Pregnancy, we provide expectant parents layers of support through our discussion board, private contact, and blog posts.

DSP “graduate” Megan Landmeier says, “When I got the news that my baby girl had Down syndrome, my world turned upside down. Downsyndromepregnancy.org launched within weeks of getting Ellie’s diagnosis. I was able to share the website and book with family members and close friends; connect with other women; learn more about Down syndrome; and find hope from experienced parents who talked me through both of my daughter’s major surgeries. I cannot fathom how difficult my pregnancy would have been without the voices of other parents providing hope.

I now have a happy, healthy eight month old daughter. When she arrived, we were able to celebrate because we were prepared for her extra chromosome with community, information, and resources.”

Every day, we help women like Megan navigate the unfamiliar territory of pregnancy post-diagnosis. To help us with our work, join our end-of-year fundraising drive at our First Giving page.

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