Archive for February, 2013

Local Down Syndrome Organizations: Down Syndrome Prenatal Outreach Program

February 8, 2013 in Resources

Down Syndrome Pregnancy also hosts a medical outreach program for local organizations who want to provide resources for medical providers and support to expectant parents.

The Down Syndrome Prenatal Outreach Program was launched by Canister in 2008 and has been used by over 50 local Down syndrome organizations nationwide. The program is now part of the National Center for Prenatal and Postnatal Down Syndrome Resources and is available for any local Down syndrome organization to use.

The first purpose of the Down Syndrome Prenatal Outreach program is to raise awareness among medical professionals about available resources and support. This is best done by establishing relationships of trust between local Down syndrome organizations and medical providers; distributing materials; doing presentations; and maintaining the professionalism of local organizations.

The Down Syndrome Prenatal Outreach program generally consists of a parent or staff contact for each OB/GYN group in the region. The Down Syndrome Representatives replicate the model of a pharmaceutical representative by visiting the OB/GYN offices quarterly to build the relationships, distribute materials, and update the stock of materials as needed. Further, the Down Syndrome Representatives offer business cards with contact information to the medical professionals and are available via telephone calls or in person.

Down Syndrome Representative training is offered to so that Down Syndrome Representatives understand the organization and focus of the Down Syndrome Prenatal Outreach program. The training also instructs parents and staff about how to act as representatives of local organizations.

To view the training course and all the downloadable files, please refer to the Down Syndrome Prenatal Outreach Program page.

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?

Materiales en español

February 1, 2013 in Resources, Spanish, Support

Para nuestros padres expectantes que hablan español y para sus parientes, hay una variedad de materiales y recursos en español.

Los folletos de la compañía Lettercase tienen texto en inglés y español:
http://lettercase.org/

Recientemente esta página de la red fue recomendada por un líder de nuestro grupo:
http://www.down21.org/web_n/index.php?option=com_content&view=section&id=8&Itemid=37

Otro recurso es Brighter Tomorrows – materiales están disponible en inglés y español:
http://www.brightertomorrows.org/

También, la NDSS (la Sociedad Internacional del Síndrome de Down) tiene información en español:
http://www.ndsccenter.org/en-espanol/

Adicionalmente, hay muchos grupos del Síndrome de Down en muchos de los países de habla español. Familias quizás puedan hallar útil buscar en la página de la red de Gifts para encontrar grupos en el país de origen (los países están en orden alfabética):
http://giftsds.segullah.org/down-syndrome-links/international-links/

“Babies with Down Syndrome” (Bebes con Síndrome Down) está disponible en español:
http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-890627-99-7_A_.asp

Canal Down21.org

Revista Síndrome de Down

Libro de lectura y escritura

“Síndrome de Down: Vida adulta”

Materials in Spanish

February 1, 2013 in Resources, Spanish, Support


For our Spanish-speaking expectant parents, and for relatives who speak Spanish, there are a variety of Spanish language materials and resources:

The Lettercase booklets have both English and Spanish text:
http://lettercase.org/

Recently this website was recommended by a group leader: http://www.down21.org/web_n/index.php?option=com_content&view=section&id=8&Itemid=37

Another resource is Brighter Tomorrows – materials are available in both English and Spanish:
http://www.brightertomorrows.org/

Also, the NDSS has information in Spanish:

The NDSC has information in Spanish as well:
http://giftsds.segullah.org/down-syndrome-links/international-links/

“Babies with Down Syndrome” is available in Spanish:
http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-890627-99-7_A_.asp

Canal Down21.org

Revista Síndrome de Down

Libro de lectura y escritura

“Síndrome de Down: Vida adulta”

Down syndrome Blogs