Down Syndrome Resources for Families

State and local resources

Down Syndrome Association of Atlanta

This is probably the best place to start. They have information on local resources and events, support groups, and advocacy efforts. There is also information and resources for new and expecting parents. They are a partner with Jack’s Basket (see below).

Jack’s Basket

Jack’s Basket provides a basket of resources to parents from prenatal through the first birthday who have a child with Down syndrome. Parents can request a basket online. Baskets may be shipped or delivered in person by a local parent volunteer. Contents may be tailored to the child and family’s age, gender, and language. They have a helpful brochure to download and a list of national resources.

Parent to Parent of Georgia

Parent to Parent of Georgia supports Georgia families and individuals from birth to 26 impacted by disabilities or special health care needs. They aim to be the source of choice for support, information, education, and leadership development for Georgians with disabilities or special health care needs, ages birth to 26, and their families. They seem to be well on their way.

Their Parent to Parent Resource Directory (The Special Needs Database) is a searchable database of over 7,000 resources in Georgia!

They also have a Roadmap that provides an overview of resources at each age and stage of development.

There are support groups and parent-to-parent connections.

They are affiliated with Parent to Parent USA.

Down Syndrome Clinic at Emory

The Down Syndrome Clinic at Emory “serves children from birth through young adulthood. Our team includes physicians, nurses, and staff who have expertise in genetics, neurodevelopment, and neurobehavior. Our clinical service is designed to meet the unique needs of individuals with Down syndrome and their families. We provide specialized clinical services to support, complement, and augment the care provided by pediatricians, family practitioners, and other primary care providers.”

GiGi’s Playhouse Atlanta

GiGi’s Playhouse Down Syndrome Achievement Centers provide free developmentally appropriate educational and therapeutic programs and career development programs for children and families with Down syndrome. They have 55 locations, including Atlanta. They also have a fantastic series of booklets on optimizing development and potential at every age.

Easter Seals North Georgia

Easter Seals provides therapeutic, educational, and support services to children and families. Some services are county-specific. They also have a financial program for children who do not qualify for the TEFRA/Katie Beckett Medicaid program.

Information for new and expecting parents

Julia’s way

Julia’s way is “dedicated to inspiring parents, medical professionals, and the general public to reimagine what’s possible for those living with Down syndrome through education, advocacy, and awareness.” They have published a book, Breastfeeding and Down Syndrome, by Ella Gray Cullen. The book is also available from Down Syndrome Pregnancy.

Down Syndrome Pregnancy

Down Syndrome Pregnancy provides “honest, compassionate, medically-reviewed, and informative support for those preparing for the birth of a baby with Down syndrome. It is a program of the National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute. The National Center also administers Brighter Tomorrows, and Lettercase, a program for expectant parents first learning about prenatal screening/testing and a Down syndrome/Trisomy 21 diagnosis.”

They have free books and resources for expecting parents on pregnancy, newborn, and breastfeeding babies with Down syndrome, including Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome by Nancy McCrea Iannone and Stephanie Hall Meredith.

Brighter Tomorrows

Brighter Tomorrows is an online resource for new and expectant parents from the National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute.

Lettercase

Lettercase publishes an online and print book, Understanding a Down Syndrome Diagnosis.

“As the nation’s clearinghouse & comprehensive training center for sharing accurate, balanced, and up-to-date information about genetic conditions, Lettercase leads the effort to make sure all expectant parents and providers have the resources and support they need at the moment of diagnosis.”

Lettercase is also from the University of Kentucky’s Human Development Institute.

Parent-to-parent connections

Also see Parent to Parent Georgia above.

Hopestory

Hopestory provides support, encouragement, and hope for parents. Parents can connect with an advocate for support and resources.

Down Syndrome Diagnosis Network

The Down Syndrome Diagnosis Network connects parents of similar age children with Down syndrome to online and local groups for support.

National resources

National Down Syndrome Congress

Down Syndrome National Congress is a national resource for information and support. Their headquarters are in Roswell, GA, and they have formed the Georgia Down Syndrome Consortium with other Georgia organizations listed here. They have an excellent New Parent Packet and other resources on prenatal testing, feeding and breastfeeding, medical care, and development in babies and children with Down syndrome.

National Down Syndrome Society

They are a national organization supporting parents and advocating for Down syndrome families. They sponsor the Buddy Walk program. They have a guide for new and expecting parents and many other medical and developmental resources on their website.

National Association for Down Syndrome

Sports & activities

Special Olympics Georgia

Georgia Soccer Top Soccer

North Metro Miracle League

“The North Metro Miracle League provides supportive programming for children, youth and adults with disabilities focused on healthier, more active lifestyles, social competence, and emotional well-being. Disability is a family affair. We proactively acknowledge, include and support parents and siblings.”

Research

DS-Connect Registry

DS-Connect is the national registry of children with Down syndrome at the National Institutes of Health. It is completely confidential, and they do not collect much personal information. It allows you to track your child’s growth and development. Families may also be invited to participate in research studies. Researchers use the data (not linked to your child) to investigate ways to treat children with Down syndrome. We highly encourage parents to register.

Specialists

Children with Down syndrome may need to see medical specialists, including pediatric cardiologists, ophthalmologists, and ear, nose, and throat doctors. They also commonly see occupational, physical, and speech therapists. We only refer patients to specialists that we have screened and approved. You can view a list of approved specialists here.