Parent Support

Congratulations on your pregnancy, and welcome to our community. If you have just received a confirmed or suspected diagnosis of Down syndrome, you may be feeling very afraid, alone, and overwhelmed by this unexpected news. We offer information that can help.

This website offers basic information about Down syndrome, and some glimpses into the lives of people who have Down syndrome. We also recommend these resources:

• The Joseph P. Kennedy, Jr. Foundation’s “Understanding a Down Syndrome Diagnosis” is an accurate, balanced, and up-to-date booklet for use when delivering a diagnosis of Down syndrome.  The booklet is the only prenatal resource to have been reviewed by representatives of the national medical and Down syndrome organizations and is available in both print and digital formats.  You can download a free copy here Understanding a Down Syndrome Diagnosis” covers the following:
  • Available health and education services
  • Common medical conditions for babies with Down syndrome
  • Information about pregnancy options
  • Helpful resources about the condition
  • Spanish translation included in all booklets
  • Optimization for different reading levels
• Down Syndrome Pregnancy is available to help you on this journey, prepare you for the immediate future, and give you hope. They also offer a free downloadable Down syndrome pregnancy book and valuable supplemental information in the Resources section.
• You can find open dialogue on Baby Center’s Down syndrome pregnancy board.
• Brighter Tomorrows supports families with accurate information about Down syndrome.

Our warmest welcome to the newest member of your family! We’re so pleased that you’ve connected with DSANV. Welcome!

As a new parent, you are likely to have questions and concerns about having a child with Down syndrome. As parents of children with Down syndrome, we are here to join in the journey together. Many of the parents in our organization have found that accurate information on Down syndrome and supportive relationships with other parents solidifies our confidence and ensures a bright future for our families.

For one-on-one parent support, please contact us at 703-621-7129 to be put in touch with our Parent Support contact or send an email to  parenttoparent@dsanv.org. Our parent support contact will be happy to share information on other resources available for you and your family. We hope to see you soon at one of our events.

DSANV’s Parent to Parent program is a resource to all families regardless of the age of their family member with Down syndrome. We provide resources and connections to other parents when there are specific needs or if a parent just needs to talk. Our volunteer mentor parents are parents of children with Down syndrome who are trained according to national best practices in parent support. Parent to Parent is also here to help point families in the right direction for community resources that would also serve their needs.

Find here a social/recreational guide that was compiled from the September 2017 ‘Creating the Future’ conference that was co-hosted by DSANV and the Kennedy Krieger Institute and presented by the NoVa Friends of the Down Syndrome Clinic and Research Center (DSCRC).

Parent to Parent responds to hundreds of inquiries every year from families of those with Down syndrome of all ages and from all walks of life. Any one of our dozens of trained mentor parents are ready to lend their listening ear and share their life experiences with those who contact us. If we can be of any assistance to you, please contact Heather Trammell, Director of Parent Support at heathert@dsanv.org or 703-621-7129. Parent to Parent helps give oversight to our Helping Hands program, supporting our member families who have specific needs due to having a child in the hospital. We can provide practical support to families in circumstances like this and others. If you are a DSANV member and you need help for your family, or know of a member family who needs a helping hand, please contact us at execdirector@dsanv.org.

If you are an expectant parent or have been parenting your child with Down Syndrome for 3 years or less, please join us for a New Parent Breakfast. For 2021, we’re adapting to ever changing COVID-19 Safety Guidelines. The New  Parent Breakfasts will either be Virtual, Outside or at the DSANV office. The in person New Parent Breakfast will feature fresh pancakes! Regardless, each type of New Parent Breakfast offers an opportunity to meet other new families, as well as DSANV members who may be able to answer some of your questions.  Click here to register

Guidelines for Inclusive Education is the first document of its kind in the United States. The document addresses the education settings that support students with Down syndrome, covering the period from early intervention and primary education through secondary and through higher education, with the primary focus being K-12 students.  Guidelines are available from NDSS at this link.