Support archives

All the single ladies

June 25, 2014 in Diagnosis, Emotions, Future, Support


If you were a single mom during your pregnancy or after your baby with Down syndrome was born, we would love to hear from you here on this blog post. Some of our moms are single moms when they find out their babies have Down syndrome. A few part ways with their partners after a diagnosis. While this may not happen often, those moms would really benefit from hearing from experienced single moms. Will you share your story here?

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?

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”

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)

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.

Support for Dads

August 29, 2011 in Dads, Emotions, Resources, Support

What resources are there for dads?  How is the prenatal experience different for them (beyond the biology)?

Competitive runner and FBI agent Heath White describes how he and his wife struggled with a prenatal diagnosis of Down syndrome and then how his life changed after Paisley was born. They have run a symbolic 321 miles together, and Heath says, “I’m always gonna be there to make sure she gets to the finish line.”

Like Heath, I remember being afraid of someone teasing my son and being worried about raising him for the rest of my life. Then I remember coming to the realization, like Heath, that my son was becoming so independent I might not get to raise him for the rest of my life. Let us know, how much of their experience sounds familiar to you? What’s different about your story? Please also share any other stories or blogs you like about dads.

Another video from a father:

Expectant parents, this video treasure has been shared throughout the on-line Down syndrome community. A father speaks from the heart about those early feelings connected with hearing the news, and the progression of perspective, feelings, and knowledge. It takes only a few moments, but we think it will help you see a glimpse of the future:

video: http://www.youtube.com/watch?v=-jZoPggEfVQ

(Please note that in the video the stat on divorce seems to be inadvertantly misquoted. Research does show that couples with a child with Down syndrome divorce at a lower rate than couples with typical children, but not as low as noted in the video.)

There is also a national group specifically for dads called (“Dads Appreciating Down Syndrome.”.), and about 55 local groups across the country have a DADS chapter that hosts monthly meetings to provide “safe forum for sharing, bragging, learning and growing with other fathers who truly understand.” Read more about the chapter meetings here.
Below are also some blogs by dads to give some insight into their perspective:

D.A.D.S. blog

Dad Dennis on life and fatherhood, with his thoughts immediately after diagnosis

Yep, Im Lost; A Dad’s Journey, an expectant dad’s blog, with some reflections on how expectant moms and expectant dads process things differently.

Ramblings of the Bearded One, a blog from a dad in Scotland

Our Jacob, a blog from a dad in Ireland

South Dublin Dad, another dad in Ireland

Down Syndrome Life, a blog by a dad with five children

Eric blogs about life with twins with Down syndrome

Dad Bernard Marrocco writes in Canada’s Globe and Mail of the beautiful journey of life with his daughter Clare who has Down syndrome. He has experienced the uncertainty and fear of receiving a diagnosis, acknowledges the difficulties, and reflects on the fundamental joy of parenting Clare. It is well worth the read, especially for our expectant dads.

Please post any additional resources for our expectant dads in the comments.  Expectant dads or experienced dads, please share your questions, concerns, or thoughts.

A welcome from local groups

March 14, 2011 in Resources, Support

Group leaders, please share with our expectant parents some information about your group, and contact information so that our expectant moms know whom to contact.  What kind of supports or resources do you have for expectant parents? Do you have any events coming up? Let’s have a shout out from our favorite groups! Let our expectant parents know they are a part of our community, not just in cyberspace but in real life too.

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