Support archives

15 Reasons to contact your local group

April 16, 2014 in Support

Some expectant moms wait to reach out to local groups for a variety of reasons.  Others reach out right away.  Are you thinking about reaching out?  Consider these benefits to reaching out locally while you are pregnant:

1.  You can find out if your group has a prenatal outreach, new parent support, or first call program.

2.  You may find a mentor who can help you one on one.

3.  You may be able to receive free books or other information.

4.  You will have access to the lending library.

5.  You may be able to have a discussion with other local parents with a prenatal diagnosis, about feelings, delivery plans, and experiences after delivery at your hospital.

6.  You may be able to get your extended family members involved in fundraising social events (like Buddy Walks, or dinners) which will give them a feeling of helping while you take baby steps into the community.

7.  You can learn about local medical services and providers.

8.  You can learn about local Early Intervention service providers, including family cost share and which therapists are the best.

9.  You may meet someone with a baby – someone whose child may be best friends with your child.  This may also help you see the immediate future.

10.  At group social events your typical children can play with kids with Down syndrome.

11.  Learn about programs and opportunities in your area.

12.  Find a local family that has faced the medical issue with which your baby has been prenatally diagnosed.

13.  Become more confident in your ability to successfully parent your child with Down syndrome.

14.  Make lifelong friends who you will know and trust in 18 years to come up with innovative housing and social activities for your child.

15.  Have fun! We have lots of fun at social events – it may take your mind off of this pregnancy stress and help you envision a happy future.

Adapted (“prenatalized”) from Missy’s blog post.

Some parents are uncomfortable about attending local group functions when their child is not yet born. Others embrace the chance to meet other parents. Groups vary in the supports they have available for prenatally diagnosed parents. Have you reached out to your local group? What was your experience? Have you attended functions, or do you prefer one-on-one support? If your child has a specific health issue, have you been able to connect with parents who experienced the same issues?

Positive support from friends, family, and health care professionals

August 26, 2013 in Comments, Friends and Family, Medical Provider, Support

Katie Ryder with her grandmother Lona Kewley

We would like to hear from both experienced and expecting parents about the wonderful support they have received from friends, family, and health care professionals. We spend a great deal of time helping parents cope with negative or stinging comments, mainly because we do not have built-in coping mechanisms for those unexpected events. Sometimes when in the stress of pregnancy post-diagnosis, a negative comment can send us reeling, and may actually drown out the many positive comments we hear.

However, there are extraordinary people out there. People who rise to the occasion and give a piece of themselves to give genuine, loving support. Focusing on their words and their actions, their support can help build our confidence and reinforce the knowledge that the world is a welcoming place for our children.

Sometimes that support comes from friends and loved ones who dive in to learn more about Down syndrome and the available resources so that they understand our children a little better and how to help them achieve their potential. Other times that support comes in the form of friends visiting the hospital and bringing blankets, stuffed animals, and candy to the Newborn Intensive Care Unit. That support can also include comments that welcome our children into the world, like the nurse who says “Congratulations! You’re baby is precious,” or comments that shape our understanding about disability, like a friend who shares, “My cousin has Down syndrome, and she’s an important part of our family. We love her.”

Please share in our comments the words, actions, or attitudes of those around you who gave the best of themselves and in turn helped you cope or look forward to a bright future. If you are on Facebook, you might also want to post your comment to your Facebook status and link to this blog post. Or post a thank you (sample linked below) in your Facebook status.

Booklet for Friends and Relatives: HERE
Sample thank you letter to the person you appreciate: HERE

(Note: We recognize that some things that bring comfort to some people may not help others because of the diversity of the personalities and beliefs of our expectant parents. For general guidelines, see our Relatives booklet linked above. Supporters should tailor their comments and support to match what they know about the personalities of the expectant parents.)

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?

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.

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.)

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”

Thanks to You

November 19, 2012 in Emotions, Resources, Support

We also want to express a sincere thanks to all of the experienced parents, medical and industry professionals, and community leaders who offer such valuable comments on our blog to help bring clarity and insight to expectant parents. We appreciate you and want to give particular thanks to Megan Landmeier, one of the first expectant moms to use Down Syndrome Pregnancy, for her kind words at My Stubborn Little Miss.

Social Media Survey Research

November 8, 2012 in Research, Support

My name is Ginger Edwardsen and I am currently a second year student in genetic counseling program at the University of South Carolina School of Medicine.

Down Syndrome Pregnancy has graciously allowed me to introduce myself to your community and explain my current research.

As a part of my Masters’ thesis, I am conducting research on the use of social media by families with a child diagnosed with Down syndrome.

Like many of you, I use social media in my everyday life and find it to be an integral part of the online community today. I am interested in seeing how families such as you use social media to gather information and support about Down syndrome.

I would like to invite you to participate in an online survey about your use of social media. You are being asked to participate in this study because you have a family member or are a caregiver of an individual with Down syndrome. This survey should take around 10-15 minutes to complete. At the end of the survey, you will be given the option to provide your contact information for a follow-up phone interview at your convenience. I would love the opportunity to talk with you briefly about the specific ways in which you find social media helpful regarding your family member with Down syndrome.

To complete this survey please click the link below:
http://www.surveymonkey.com/s/socialmediads

Your time and involvement would be greatly appreciated. If you would like more information or have any questions please feel free to contact me or my faculty advisor with the contact information below.

If you have any questions about your rights as a research participant, you may contact the Office of Research Compliance at the University of South Carolina at (803) 777-7095.

I would like to thank Down Syndrome Pregnancy for allowing me to share my research with you today and I would like to thank you all in advance for your consideration.

Sincerely,

Ginger Edwardsen
Genetic Counseling Intern
University of South Carolina School of Medicine
Department of Clinical Genetics & Molecular Medicine
Two Medical Park, Suite 103
Columbia, SC 29203
ginger.edwardsen@uscmed.sc.edu
919-576-0575

Andrea Sellers
Certified Genetic Counselor
Assistant Professor
University of South Carolina School of Medicine
Department of Clinical Genetics & Molecular Medicine
Two Medical Park, Suite 103
Columbia, SC 29203
asellers@uscmed.sc.edu

Preparation

January 18, 2012 in Birth Plans, Breastfeeding, Friends and Family, Health Issues, Medical Provider, Support

Many of our expectant parents agreed to diagnostic testing in order to “prepare” for having a child with Down syndrome.  Yet post-diagnosis they may not be sure exactly what they should be doing to prepare.  For those of you who had a prenatal diagnosis, share what steps you took.  For those of you who had higher chances but skipped the amnio, were there things that you did to prepare “just in case”? For all of you, are there things you wish you had done? Are there things you wish you had not done?

(Original post December 2, 2010)

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