Part of the mission of the Down Syndrome Association of Greater St. Louis includes family support.

For our organization, family support can start as early as a prenatal diagnosis. Our Expectant Parent section provides information and resources specific to those who are expecting a baby with Down syndrome. But, because many of our families find out that their baby has Down syndrome after birth, we also have a New Parent section that shares information about our New Parent packet and our New Parent Support Network as well as resources for Grandparents. You can help us welcome new babies into the world by donating items from our new baby registries, found at Target and Babies R Us! All items received go into welcome baskets, created to gift to new parents shortly after the birth of their child.

SPECIAL FAMILY EVENTS

The DSAGSL offers families opportunities throughout the year to connect and have fun! Visit our calendar of events for a complete listing of all of our upcoming activities and below are some very special highlights!

Music Mania Music Therapy
Saturday, January 4th, 2014 10 – 11:30am
Ranken Jordan Pediatric Hospital
Join the DSAGSL and Ranken Jordan for a morning of music, learning and fun with a board certified music therapist. To RSVP visit the link above or email the DSAGSL at erin@dsagsl.org

EXPECTANT PARENTS

Dear Expectant Parent,

If you are reading this, it is likely that you were just given the news that your baby may have Down syndrome. You may be feeling overwhelmed and uncertain. We understand the many emotions that you may be experiencing right now. It is normal to mourn the loss of the baby that you thought you were going to have. We have been where you are and we are here to help.

The Down Syndrome Association of Greater St. Louis was created by parents of children with Down syndrome. One of our missions is to support families with information and encouragement. For many parents, the single most helpful thing that they did after receiving the news was to talk to other parents of children with Down syndrome. If you would like to talk with someone or receive our packet of information for expectant parents, please call our office at (314)961-2504. You can also e-mail Christy Klaus, our Family Support Coordinator, at christy@dsagsl.org. She would be happy to answer any questions or send information to you.

The weeks ahead will likely be touched with many emotions as you travel this unexpected path. We do ask you to remain mindful of the following information during this time.

Quality of life for individuals with Down syndrome has increased dramatically in recent years due to significant advances in the quality of medical care and educational support.

Some of the written and word-of-mouth information that is available on Down syndrome is outdated and inaccurate. Make sure that any information you consider is from a recent and reliable source.

It is essential to continue good prenatal care throughout the remainder of your pregnancy and surround yourself with people who are supportive of you and your child.

Here are some resources that expectant parents have found helpful:

Comprehensive Website on Pregnancy and Down Syndrome

Light at the End of the Tunnel: Reflections from parents whose child with Down syndrome was diagnosed before birth

Welcoming babies with Down syndrome

Parents, siblings, and people with Down syndrome report positive experiences

NEW PARENTS

Congratulations on the birth of your baby!

We know that, with the news that your baby has Down syndrome, you may have questions and experience a myriad of emotions. As you begin this journey, we want you to know that we are here to offer you our encouragement, experiences and support.

Our trained parent volunteers have a packet of information, including and the book Babies With Down Syndrome: A New Parents Guide. They would love the opportunity to share these resources with you and help you find the answers to your questions and concerns. You can also choose to have these resources mailed to your home.

Please feel free to contact Christy Klaus, our Family Support Coordinator, at 314.961.2504 or christy@dsagsl.org. She will be happy to answer questions, send resources or connect you with a support volunteer.

For more information, we also recommend this wonderful website with information for parents who have just received a pre- or postnatal diagnosis.

Just call us at 314-961-2504, and we will connect you with one of our trained parent volunteers.  We are looking forward to meeting you and your family.


GRANDPARENTS

If you are a grandparent to a new baby with Down syndrome, please feel free to download our packet of helpful information for new grandparents.