New and Expectant Parents
If you have been diagnosed as expecting a baby with Down syndrome, you can get great ongoing online support from DownSyndromePregancy.org which includes the e-book: Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome. It also offers a blog, interactive and anonymous discussion board, regular conference call support group, one-on-one email support, sample emails to share the information with your family and friends and referrals to in-person support.
If you have just given birth, congratulations on the birth of your baby and on your growing family!
While there are many emotions you may be experiencing, you may also be wondering “What does this mean and what do I need to do first?” This list will help you get started.
New Parent Information Packet
If you didn’t receive one already from your healthcare provider, request a New Parent Information Packet. We will happily send you our packet that includes some basic facts about Down syndrome, breastfeeding, most frequently asked questions, and local and national resources. If you’d also like to receive a free copy of the book “Babies with Down Syndrome: A New Parent’s Guide,” please add that to your request.
Request a free information packet or book using our contact form
Join Your Local Down Syndrome Support Group
Click here to become a member of the DSACF. This will sign you up to start receiving updates, quarterly newsletters, and other information about upcoming meetings (held monthly), playgroups for newborns (2-3 times/month), and special events. Annual dues, to help offset the costs of items like our New Parent Information Packets, are only $20. Dues may be waived your first year or if there is a financial hardship.
Join the Down Syndrome Association of Central Florida using our secure online membership center
Meet Other Families
If you would like to meet other families who have a child with Down syndrome, sign up for our Parent Mentor Visitation Program. Include that request when you become a member or simply call the DSACF office at 407-478-5621. We try hard to match families based on ages of parents and child, gender, geography and other common issues.
Request to become a part of our Parent Mentor Visitation Program
Contact Your Local Early Steps Office
Contact your local Early Steps office to schedule an evaluation to get started learning about early intervention (which may include physical, occupational, speech and/or oral motor therapies) and how to best meet your new baby’s needs as he or she grows and learns. Early Steps offers early intervention services for families with infants and toddlers (birth to thirty-six months) who have developmental delays or an established condition likely to result in a developmental delay such as Down syndrome.
More information is available at the Early Steps Website
Visit our parents’ page to view links to more than a dozen resources that will help you meet your child’s unique needs.
Other helpful links…
DownSyndromeDiagnosis.org - National Center for Prenatal and Postnatal Down Syndrome Resources. The National Center includes the following medically reviewed programs: Brighter Tomorrows website, the Lettercase/Kennedy Foundation booklet, and the Down Syndrome Pregnancy books and website. The formation of this National Center is particularly important at this time as prenatal testing technology continues to advance, and medical providers and expectant parents need accurate, up-to-date, and balanced resources to understand a prenatal diagnosis of Down syndrome as described in the Prenatally and Postnatally Diagnosed Conditions Awareness Act, P. L. No. 110-374.
The National Center website provides a portal for medical professionals and new and expectant parents to find out about what each of these free and well-established resources offers. The activities of the National Center include the distribution of professional resources to medical providers and their patients both in print and online; the development of new materials; and national medical outreach through journal publications and presentations at medical conferences.