First Call Program for New & Expectant Parents

Haga clic aquí para ver este video con subtítulos en español.

We are here to help you…

Congratulations on the birth, or expected birth, of your baby!  Because your child has been diagnosed with Down syndrome, you may feel that you have entered into a whole new world – one that can be confusing and filled with deep, and perhaps conflicting, feelings at first.  You probably have lots of questions, concerns and fears right now.  It is our hope that through information and support, you will gain answers to your questions, empathy for your feelings, and an understanding of your baby’s special needs.  We feel strongly that the opportunity to talk to other parents of children with Down syndrome can be invaluable.

How we can help you…

Our First Call program is a volunteer group of experienced parents who make themselves available to parents of children newly diagnosed with Down syndrome.  Whether you have received a diagnosis prenatally or after the birth of your child, we are here to help. We will answer your questions honestly and do our best to describe the joys and challenges we have experienced in our own personal journeys.

We are available to come visit you in the hospital or at home, and are also available by phone or e-mail anytime.  We are here as a shoulder to lean on, a voice of experience, and a source of current information.  We are here to answer your questions.  We can provide a Resource Notebook containing up-to-date information about Down syndrome and resources available to you and your child.  And if we don’t have the answers to your questions, we’ll direct you to someone who may.  We’re also here to listen with compassion, never judgment.  Not every parent in First Call has the same story or has found the same solution, but we have all had the same concerns at one time or another.

No family should feel alone.  Our services are free and confidential.

MAKE US YOUR FIRST CALL:
Phone 336-480-8871
Email: info.pdssn@gmail.com

Release of Information Form (for hospitals and doctor offices, but parents may use as well)
Forma de Liberación de Información (para los padres primerizos, hospitales y oficinas del doctor)

Check Out Additional Resources Below:

Click here for a message from a mom, “There’s No Down in Down Syndrome”.

National booklet “Understanding a Down Syndrome Diagnosis”
The 2011 edition of “Understanding a Down Syndrome Diagnosis” contains the latest medical and developmental information about people with Down syndrome as well as local and national resources, pregnancy options and helpful visuals and graphics. This booklet has been reviewed by all the major medical organizations involved in expectant mothers’ health. To request a copy of this booklet, call 336-480-8871 or e-mail Dana.pdssn@gmail.com. You may also download a digital copy here.

Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome
A free, downloadable book for expectant parents who have made the decision to continue their pregnancy, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome, is available at www.downsyndromepregnancy.org. Includes strategies for coping with a Down syndrome diagnosis, medical guidelines for the first year, and support resources.

“We’re More Alike Than Different” Campaign

 

Down Syndrome in the 21st Century
See the wonderful abilities and potential of people with Down syndrome. From infancy to adulthood, this 2008 video showcases individuals with Down syndrome living their lives to the fullest and doing things “not thought possible” — using sign language, swimming, giving a school report, dancing, gossiping, holding a job and giving a speech. Made especially for new parents of a child with Down syndrome, this is for anyone who wants a current, accurate look at Down syndrome today. Produced by the Down Syndrome Association of Central Texas.  Click this link to watch the video: Down Syndrome in the 21st Century.

Online Resources

Recommended Books 

    • Down Syndrome Parenting 101 by Natalie Hale
    • Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, edited by Kathryn Lynard Soper.
    • Common Threads: Celebrating Life with Down Syndrome by Cynthia Kidder and Brian Skotko.

Additional Reading 

Adoption
We understand that not all birth families feel they are able to meet the needs of children with Down syndrome. 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. The network currently has over 200 registered families, each waiting to adopt a baby with Down syndrome.  You may contact them directly at (513) 213-9615.

(Many thanks to the Massachusetts Down Syndrome Congress for support of our Parents’ First Call program.)