New Parent Resources

Dear New Parents

Congratulations on the recent or upcoming birth of your new baby!

As parents who have experienced the birth of a child with Down syndrome, we know this is a time of very mixed emotions. When a baby is born with Down syndrome, so much is focused on the differences, medical issues, and challenges that lie ahead. In reality, your baby who has Down syndrome is more like other babies than different. Advances in research and healthcare have improved the lifespan of individuals with Down syndrome from 25 years in 1983 to 60 years today. Individuals with Down syndrome are now graduating high school, going to college, and giving back to society by working or volunteering. You may need time to process this unexpected news and settle in, but we are glad to be here for you, to offer guidance and information whenever you are ready. There are lots of resources online and a few of the ones we recommend are listed below, but some of the best information comes from other parents like you who have already been in your shoes. When you are ready – just contact us.

Online Resources

  • Brighter Tomorrows provides families with balanced information about receiving a prenatal or postnatal diagnosis of Down syndrome.

  • For parents who receive a prenatal diagnosis, a downloadable book called Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome is available at DownSyndromePregnancy.org. Includes strategies for coping with a Down syndrome diagnosis, medical guidelines for the first year, and support resources.

  • The National Down Syndrome Congress (NDSC) offers a wealth of information for expectant parents.

  • The National Down Syndrome Society’s “A Promising Future Together” guide is written specifically for new and expectant parents.

Recommended Books

  • Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, edited by Kathryn Lynard Soper. A book of love, joy, and hope that will bring hope to those new to the DS community.

  • Woodbine House Publishers specializes in books on a variety of developmental disabilities, including Down syndrome. They also offer discounts in the month of October for Down syndrome awareness month.

  • NDSC offers a reading list as well.