Helpful Links for New Parents

 

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“Down Syndrome Diagnosis Network is comprised of  a group of women from all over the United States who each have a child with Trisomy 21 (Down syndrome) and a great desire to ensure women who receive a DS diagnosis are provided with current information and support.  We come from varying political and religious beliefs and have a pro-information stance. The Down Syndrome Diagnosis Network (DSDN) supports families with current information and real-life accounts of life with Down syndrome during the prenatal to early childhood phases. DSDN is committed to facilitating unbiased, family-centered discussion of Down syndrome within the medical community.  We strive to cultivate a culture of acceptance and inclusion for people with Down syndrome at all stages of life.”
 
The DSDN offers nation wide, online support groups for mothers  and fathers of children with Down syndrome who are currently pregnant through age 3. These online support forums offer new moms a place to ask questions, share thoughts, and cheer each other on as they raise their families. In addition to the online support offered, DSDN affords readers a glimpse into the lives of mothers and fathers as they received their child’s diagnosis with “Unexpected: Stories of a Down Syndrome Diagnosis”. These online stories share parent diagnosis experiences from around the world. For more information or to join a “Rockin’ Moms” or “Rockin’ Dads” support forum, please visit www.dsdiagnosisnetwork.org. You can also visit DSDN on Facebook at www.facebook.com/DownSyndromeDiagnosisNetwork.
 
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“Down Syndrome Pregnancy is a program administered by the National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute. We provide honest, compassionate, medically-reviewed, and informative support for those continuing a pregnancy post-diagnosis or waiting until birth for a confirmed diagnosis. The National Center also administers Brighter Tomorrows, an online resource for new and expectant parents, and Lettercase, a program for expectant parents first learning about prenatal screening/testing and a Down syndrome/Trisomy 21 diagnosis.”
 
Down Syndrome Pregnancy offers articles on breastfeeding a baby with Down syndrome, creating a birth plan for your baby with Down syndrome, financial planning and special needs trusts, and articles of information for siblings, grandparents and loved ones. In addition to the many articles provided at Down Syndrome Pregnancy, the books “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” (also available in Spanish)  and “Your Loved One is Having a Baby with Down Syndrome” are available as free downloads. These books offer support to parents with a diagnosis of Down syndrome for their child. For more information please visit www.downsyndromepregnancy.org.
 
 
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“The National Down Syndrome Adoption Network provides information to birth families who may be seeking alternatives to parenting as they prepare for the arrival of their child. Making an adoption plan for a child with Down syndrome is a loving choice and can be the right choice for some families. The NDSAN is also here to provide support to families who wish to adopt a child with Down syndrome. There are no fees for any of the services provided by the National Down Syndrome Adoption Network. Our mission is to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.”For information on Down syndrome adoption, please contact Robin Steele at 1-(513)-213-9615. Please visit www.ndsan.org for more information.
 
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“Why are we so afraid of Down syndrome? Because we’re often only told a small part of what is truly a big, beautiful love story.” Sipping Lemonade is a blog written by a mother of four children, her second eldest having Down syndrome. Please visit www.sippinglemonade.com to read more from Lauren about life after the diagnosis and her beautiful daughter Kate.bt“This website is designed to offer you information about Down syndrome, to allow you to explore frequently asked questions, and to give you a glimpse into the lives of children and young adults with Down syndrome.   With the rapid development of more precise prenatal screening tests, it is even more vital that parents and prospective parents have access to balanced, up-to-date information on the lives of individuals with Down syndrome and their families.
 This website contains the most accurate research we have about the future for children with Down syndrome and their families, the positive effect of early intervention, the impact of these children upon their families, and the challenges they face. We provide links to national organizations, with local affiliates who have parents very willing to answer your questions honestly and candidly. There is information on this website about the national Down syndrome adoption waiting list – something that people are often surprised to learn about.”Brighter Tomorrows is recognized by the American College of Medical Genetics and the National Society of Genetic Counselors as an approved source for new and expectant families of a child with Down syndrome. Please visit www.brightertomorrows.org for more information.