Local Down syndrome Support

One of the best things you can do right now is call and visit your local Down syndrome association, group or organization. They can answer a lot of your questions, refer you to a Down syndrome Specialist, Pediatricians who are knowledgeable about Down syndrome, and introduce you to support groups. The NDSS is a great place to start, you can check their list of local affiliates here

Online Support

The National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky’s Human Development Institute oversees three medically reviewed programs that complement each other in providing important resources and information for new and expectant parents learning about a diagnosis of Down syndrome:

Brighter Tomorrows – Provides a comprehensive website with information in English and Spanish for new and expectant parents learning about Down syndrome. Includes the most current research about Down syndrome, links to resources, and life glimpses.

Lettercase – Offers the Kennedy Foundation’s “Understanding a Down Syndrome Diagnosis” booklet that was prepared with assistance by representatives of the national medical and Down syndrome organizations. The booklet is intended for pregnant women first finding out about a prenatal Down syndrome diagnosis. Includes basic information about Down syndrome and about families who have a child with Down syndrome; potential medical complications; resources about Down syndrome; and reproductive options

Down Syndrome Pregnancy – Offers a website with a blog for women who are pregnant and expecting a baby with Down syndrome. Also includes the books “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome” and “Your Loved One is Having a Baby with Down Syndrome” available as free digital downloads or printed books from the distributor, Woodbine House.

Down Syndrome Dia


Definitely check out IDSC Prenatal Diagnosis page on Facebook where you can talk to many women who have also recently had their babies diagnosed with Down syndrome or are on the other side.

The Down Syndrome Diagnosis Network (DSDN) Facebook page supports families with current information and real-life accounts of life with Down syndrome during the prenatal, newborn, and early childhood phases.

Facebook also has tons of fan pages with tons of real life information, pictures and stories of people with Down syndrome.  A few of our favorites:

Delaney Skye –  Become one of Delaney’s followers to see pictures and videos documenting her accomplishments!  See what can be achieved with early intervention.


Delaney Skye – A day in the life of a child with Down syndrome who has been given early intervention. Delaney Skye was born on July 2, 2013 & has been receiving 3 therapies a week, plus supplements.  This plus a whole lot of love & treating her just like any other baby is why her family believes Delaney is hitting all her milestones within the “typical” range.

The Sumulong 3 – Follow the Sumulong family on their adventures with Owen who has Down syndrome.

Big Blueberry Eyes – It’s about life being a military family while raising 2 kids, daughter Kayla has Down syndrome.

Giggle and Hugs – Life with our daughter Lily – lots of medical/developmental stories and others about adoption and family life.

A Little Moxie – Meriah, deaf mother to Moxie who has Down syndrome, shares about traveling, disability and parenting.

Kimchilatkes – A positive chronicle of a family raising children all along nature’s continuum. They homeschool and the littlest “tater” has Down syndrome.

My Stubborn Little Miss – Faith, life, Down syndrome, photography, teaching, family, and a three year old named Ellie.


There are so many amazing role models showing you what your child can achieve. To get a good idea of what a person with Down syndrome can accomplish, check out some of these videos:

Dr. Karen Gaffney – Karen Gaffney has quite the list of accomplishments on her resume including the first living person with Down syndrome to ever receive  a doctorate, is known worldwide for being the first person with Down syndrome to complete a relay swim across the English Channel, and she has started a non-profit to help better include people with down syndrome and other developmental disabilities in the community and workplace.

The Specials” – An internet docu-soap which follows Lucy, Lewis, Sam, Megan & Hilly. Five housemates with learning disabilities (most of them have Down syndrome) who live the classic student lifestyle in Brighton, United Kingdom.

Delaney Ott-Dahl Foundation – We started this channel to show parents with a prenatal diagnosis of Down syndrome that they can KEEP their baby. Termination is not the only option.  We share Delaney’s life so these parents can see the every day, REAL life we have – What it really means to have a child with Down syndrome. With a little extra love and support Delaney is able to achieve everything any other child can.  Delaney is ahead of or on track developmentally with babies without her disability.