Posts Tagged ‘Nancy Iannone’

Online Communities for Pregnant Moms

August 15, 2013 in Support

Between online forums, Facebook, Pinterest, etc., there are many online resources to provide a sense of community and meet some of the unique needs of pregnant moms expecting a baby with Down syndrome. These interactive online communities can help expectant parents who might have questions about medical issues, sharing the news with friends and family, or who simply want to share the excitement over ultrasound and newborn photos of their little ones.

Nancy Iannone, Co-Author of Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome says, “What we hear most often from pregnant moms is that one of the biggest issues is that feeling of isolation even when surrounded by friends and family … because there’s no one around you who has been through that experience of receiving a prenatal Down syndrome diagnosis. So, many parents find it helpful to get support from others who have been through a similar experience or who are going through the experience with them.”

There are a number of interactive communities, and some parents opt to pick one that meets their needs while others use all of them to be surrounded by support.

One of the most robust online forums for those receiving a prenatal diagnosis of Down syndrome is the Down Syndrome Pregnancy BabyCenter board. The board was created in 2006 and has almost 1300 members. The group “owners” are original DSP founders Nancy Iannone, Missy Skavlem, and Amy Geoffrey who are all moms who received a confirmed prenatal diagnosis or high chances with blood tests, and they are leaders in the Down syndrome community. They provide researched information and support for pregnant moms in response to specific topics and questions and also connect pregnant parents with other parents who have faced similar medical issues, who have similar beliefs or backgrounds, or who live in the same geographic areas.

Some of the advantages of this board include the significant experience of the board moderators, the ability for users to remain anonymous or just “observe” the public conversations, and the many resources BabyCenter offers all pregnant moms. However, the online conversations can be viewed publicly unless sent as a private message, and it can be more difficult to share photos.

Other BabyCenter boards include the following:

Some of the Facebook communities for pregnant moms expecting a baby with Down syndrome include the following:

  • T21 Pregnancy Support Group
  • Has over a hundred members and is run by Joelle Kelly, a mum from Australia who received a prenatal diagnosis. This group actively provides interactive support to pregnant moms continuing a pregnancy after learning about a prenatal diagnosis of Down syndrome.

  • Down Syndrome Pregnancy Group
  • Primarily offers information about current trends in prenatal testing, news about people with Down syndrome, and references to popular pregnancy blog posts from around the web.

The advantages of these groups are that they are private, it’s easy to share and view photos, and you can make friends with people who have revealed their identities. However, it might not suit the needs of those who prefer to receive anonymous support or who aren’t ready for groups related to Down syndrome to show up in their profiles.

Another online tool is the Sidelines National Support Network that provides “international support for women and their families experiencing complicated pregnancies and premature births.” The advantages of Sidelines are that it includes pregnant women with a diverse array of complicated pregnancies and offers many community forums; however, it is not specific to Down syndrome and does not have resources about Down syndrome.

Other options include discussion forums, Twitter accounts, and Facebook pages hosted by local groups. You can find your local Down syndrome organization with the Down Syndrome Affiliates in Action “Find an Affiliate” tool. The advantages of interactive communities sponsored by local groups are that you can get answers to local questions like recommendations for pediatricians or where to find the nearest playgroup. You can also usually remain anonymous when viewing the Facebook page or Twitter feed.

Other online communities where you can find Down Syndrome Pregnancy include Twitter and Pinterest. We usually post news articles, prenatal testing updates, and popular pregnancy blog posts on our Twitter feed, and our Pinterest boards include Baby Shower Ideas, Books We Love, Blogs We Love, Prenatal Testing, Prenatal Websites, Toys for Baby, Playing with Baby, Mom Style, Baby Style, and Great Websites.

What online communities have you found to be helpful? What does it mean to you to get support from other moms on a similar journey?

What Parents Wish They’d Known

May 1, 2013 in Emotions, Future, Resources

Kathy Soper collected thoughts from experienced parents, and through the generosity of publisher Woodbine House, this collection of parental advice is available free on the Woodbine House website.

We do link to this booklet in our book, but an extra tidbit is that my thoughts about my daughter Gabby are recorded there. What did I wish I would have known about Gabby? Check out my quote from the booklet:

I wish I’d known that I would say and feel so often, “You’re so smart!” or “You are the cutest kid in the whole world!” I wish I’d known I would use words like “sparkling,” “vivacious,” and “infectious laughter” when describing my child. I underestimated her.

While you are over at Woodbine House, check out the amazing list of Down syndrome resources that they have available.

Blogger Patti also wrote a Mother’s Day Celebration where experienced moms share with you what they wish you could know about life on the other side of the fence: A Perfect Lily: Mother’s Day message . . . from our heart to yours

Preparing for World Down Syndrome Day 3/21/2013

March 11, 2013 in Events, Resources

On March 21 (3/21), the Down syndrome community will be celebrating World Down Syndrome Day. This date is significant because it represents three copies of the 21st chromosome, and you can find out more at World Down Syndrome Day (international website). Some families take this opportunity to share information about Down syndrome with their local communities, schools, churches, doctors, or friends and family. Ideas include offering presentations, sharing materials about Down syndrome, posting links on social media, or enjoying reading a new blog — whatever is most comfortable.

School presentations: Down Syndrome Pregnancy offers a range of presentations for schools that can be helpful in preparing older siblings and their friends for the birth of a baby with Down syndrome.

Medical Presentation: Down Syndrome Pregnancy also offers a short 15-30 minute presentation for volunteers to share with medical providers on the best practices for delivering a Down syndrome diagnosis.

Prenatal Down Syndrome Resources: While all of our materials are available for free, some expectant parents like to make sure that their medical providers have printed resources on hand in case another family in the office receives a diagnosis of Down syndrome. You can order print copies of “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” and “Your Loved One is Having a Baby with Down Syndrome” from Woodbine House, and you can order “Understanding a Down Syndrome Diagnosis” and “Delivering a Down Syndrome Diagnosis” from Lettercase.

Blogs:

You can also see a range of blogs that have a positive connection to Down syndrome at Down Syndrome Blogs by the T21 Writer’s Alliance. The blogs are organized by category so that you can select which blogs would be most interesting to you.

Video and Social Media:

In the past few months, the Down Syndrome Guild of Greater Kansas City has released a wonderful short film featuring people with Down syndrome and their friends discussing Down syndrome, friendship, and proper language. This is another great tool to share with friends and classrooms to introduce Down syndrome:

The International Down Syndrome Coalition also shared a World Down Syndrome Day video this past week that features images of people with Down syndrome and features the song “Who I Am” written and sung by Sarah Conant.

Prenatal Testing: Insight from Moms

February 5, 2013 in Diagnosis, Emotions

Amy Julia Becker’s recently released book, “What Every Woman Needs to Know about Prenatal Testing,” explores new advances in prenatal testing technology, the ethical implications of testing, different reasons for testing, and how prenatal testing impacts the author from a faith-based perspective. Amy Julia is also the mother of a daughter with Down syndrome and the author of “A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny.”

Amy Julia’s target audience for “What Every Woman Needs to Know about Prenatal Testing” is pregnant women who have not yet undergone prenatal testing or those who plan to start a family. She explains the range of prenatal tests for Down syndrome (and other conditions) in language that is easy to understand and then explores the reasons why different women may or may not choose to take tests. The approach is informative and balanced — exploring the different practical and ethical issues at hand.

Author Amy Julia Beckers says:

“All pregnant women will be offered the option of prenatal testing. As a result, all pregnant women face a series of personal and ethical questions about those tests. This book is designed to help women navigate the testing process by considering three questions–what is prenatal testing? what information does it offer? and what information do I want, and why? Women who have already started down the road of prenatal testing can benefit from this book in that it offers resources to think through the role of disabilities within our society and the possibilities for considering a good life for children with disabilities. There is plenty of medical information out there about prenatal testing, but this book is designed as one mother talking to other mothers and potential mothers about the questions that matter most to us as we prepare to welcome our children into the world.”

We also appreciate that Amy Julia refers to both Down Syndrome Pregnancy and Lettercase as suggested resources for women who are undergoing testing.

Amy Julia has followed up the release of her book with a series of blog posts from women sharing their different perspectives on prenatal testing, including one from our “Diagnosis to Delivery” co-author Nancy Iannone:

I Regretted My Amnio by Meriah Nichols

Why I Wish I Had Chosen Prenatal Testing by Patti Rice

What do you think? Are you grateful that prenatal testing allowed you to prepare or do you wish you hadn’t found out?

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.

Down syndrome Blogs