Resources archives

The Power of Moms

May 28, 2013 in Book, Diagnosis, Resources

Since May 1, we have raised $8100 towards our goal of earning $10,000 to provide “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome,” to prenatal genetic counselors nationwide. This Mother’s Day campaign was launched with a $5000 contribution from a donor who wasn’t a large organization, a corporation, or a famous philanthropist. This donor was a mom and dad who received the Lettercase book from the geneticist after their baby was diagnosed with Down syndrome and who used “Diagnosis to Delivery” and the Baby Center board throughout the pregnancy. This mom is the same mom who said these resources were her lifelines during her pregnancy that gave her hope and that she wished every prenatal genetic counselor also had a copy of “Diagnosis to Delivery” to give their patients.

This is also a mom I was able to meet in person in the Newborn Intensive Care Unit just days after her son’s AV repair a couple of months ago. I was able to hug her and rub the head of her sweetly resting boy with the tubes still attached to his resilient body. Her son is regaining his strength after surgery and so has his mom as she put into action this effort to help other families.

Since that first donation, other moms and dads have joined us in this campaign … and shared their stories with us along the way. Some of them had a wonderful experience upon receiving a prenatal diagnosis and were given support and information immediately from a compassionate healthcare provider. They want to make sure other families get the same. Others received little to no information and felt abandoned and alone. They want to make sure no other mom or dad ever feels that way.

This is the power of moms: to move past the initial shock and grief of receiving a prenatal diagnosis of Down syndrome and launch efforts to support others. To give support, compassion, understanding … and then hope for a beautiful future.

So, our mom who provided the initial funding has once again generously offered in this last week of the campaign to match donations until we reach our goal on Friday, May 31. Please join us helping her to give a lifeline today.

Pregnancy Blog Posts

May 15, 2013 in Blog, Emotions, Resources

Leticia Keighley from Australia recently shared with us the beautiful story of her pregnancy on her blog: Embracing Wade. She offers a raw and authentic account of her experience “waiting it out” after receiving a 1:69 chance of having a baby with Down syndrome.

“My pregnancy was definitely a roller coaster of emotions where I questioned my resolve, my decisions and my sanity every time I got a new test result. But right from the beginning, all the way through till now, I had reasons why I didn’t want to test for Down Syndrome. This post is not about what I think everyone should do, it’s about what I did and how it helped me get through the turmoil of prenatal diagnosis. Even though there were ups and downs during those 9 months, by the time Wade was born, I was ready and happy and waiting there with open arms to meet him whether he had DS or not and if any of my thought processes help other women in similar circumstances then its achieved its purpose.”

Below is our list of blogs from other moms who received a prenatal diagnosis and then blogged about the experience during their pregnancy. Those stories are so real and meaningful to expectant parents who can then go on to read the outcome for families. Please add to our list in the comments.

Mother’s Day 2013: Give a lifeline

May 6, 2013 in Book, Diagnosis, Resources, Support

Last month, one mom’s story inspired us to launch a special Mother’s Day campaign. She described feeling “desperate and isolated” after learning that her baby boy would have Down syndrome, and Down Syndrome Pregnancy was the lifeline that gave her hope during that time. She told us that she wished every genetic counselor could have a copy of our book to share with other pregnant moms expecting a baby with Down syndrome.

This Mother’s Day, we’re determined to make her wish come true.

During the month of May, all donations to Down Syndrome Pregnancy will go toward providing copies of Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome to prenatal genetic counselors.

Reaching $10,000 by the end of the month will cover all prenatal genetic counselors nationwide. The incredible news is one generous donor has already kicked off the campaign with a $5000 contribution; we are already halfway to our goal!

Please make a donation now to help us raise the additional $5,000 to make sure all expectant moms have the resources they need.

Learn more about our Mother’s Day Campaign: Give a Lifeline.

This month we’ll also be featuring the stories of moms who have used Down Syndrome Pregnancy and the BabyCenter Board over the years, and we’ll be including photos of our Down Syndrome Pregnancy “graduates.” If you’d like to be featured, please email your photo and story to stephanie.meredith@uky.edu.

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.

Down Syndrome Affiliates in Action Conference 2013

March 14, 2013 in Resources, Support

We want to thank all of the wonderful local Down syndrome organization representatives who attended our breakout session at the 2013 Down Syndrome Affiliates in Action Conference: “Reaching Out to Obstetric Medical Providers and Supporting Expectant Parents and Their Families from Diagnosis to Delivery.” We enjoyed a wonderful session on February 22 talking about how to share resources with medical providers so that expectant parents receive support immediately following a diagnosis, then we described how local organizations can then meet the unique needs of families adjusting to a prenatal diagnosis. Below are the handouts from our session for any who might be interested in finding out how a local Down syndrome organizations can expand their support for families who receive a prenatal diagnosis:

MedicalOutreachDSAIA2013 (Slide presentation from the breakout session.)

AffiliateBrochure (Handouts from the session on available resources for local organizations.)

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.

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.

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://esp.ndss.org/index.php

La NDSC (Congreso Nacional del Síndrome Down) también tiene información en español:
http://www.ndsccenter.org/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:
http://esp.ndss.org/index.php

The NDSC has information in Spanish as well:
http://www.ndsccenter.org/espanol/

Additionally, there are a lot of Down syndrome groups in many Spanish speaking countries. Families may find it useful to take a look at the Gifts website for websites of groups in their countries of origin (countries listed alphabetically):
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”

Twins

January 9, 2013 in Birth Plans, Future, Health Issues, Post-Diagnosis Health, Resources, Siblings

We sometimes have expectant parents awaiting the birth of twins, and one or both babies have Down syndrome.  If you have twins, will you help our expectant parents?  How was your birth plan different?  Did the logistics of a twin birth cause extra complications? Are there any differences in parenting that you see? In what ways is it more difficult?  In what ways is it beneficial?  If you have a blog or website that pertains to twins and Down syndrome, please share.

We will start off suggested resources by mentioning Jen Graf Groneberg’s Roadmap to Holland.  Jen gave birth to twin boys, one with Down syndrome, and wrote of her early experiences.

Another resource is a blog by Eric Waksmunski, dad to twin boys with Down syndrome.

Another guest post by Vicki Vila on Amy Julia Becker’s “Thin Places” blog gives a unique and insightful perspective about fraternal twins where one has Down syndrome and the other does not. Vicki Vila’s blog can be found at www.modernmessy.wordpress.com.

Let’s hear some more resources, and any personal experience.

Vicki Vila

Down syndrome Blogs