Posts Tagged ‘telling my family’

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.)

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”

Telling people your unborn baby has Down syndrome

September 13, 2012 in Friends and Family


A decision to share the news can be a difficult one for some expectant parents. Some tell without a plan, while others craft their message. Did you decide to tell loved ones? How did you share the news? When did you tell, and what did you say? What the reaction positive? What do you wish you had done differently? If you have a group e-mail, please share it with other expectant moms.  DownSyndromePregnancy.org has a sample e-mail for you to copy and edit to suit your circumstances and personal reflections.

Update: We also have a booklet for your loved ones. You can download if for free or order a copy from Woodbine House.

Download here: http://downsyndromepregnancy.org/wp-content/uploads/2012/02/DSP-Loved-Ones-booklet-Ver2-20120220.pdf

Purchase a paper copy here: http://woodbinehouse.com/diagnosis_to_delivery.asp

(This post originally appeared on October 1, 2010.  It is worth a revisit for our newer readers, especially with the update.)

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