Facts about Down syndrome
- Down syndrome is the most common chromosomal condition in humans.
- Down syndrome occurs when a person’s cells contain 47 chromosomes instead of 46.
- The cause of Down syndrome is unknown. Nothing a mother does or doesn’t do during pregnancy causes Down syndrome.
- Down syndrome occurs about once in every 691 births in the United States. It is not related to race, nationality, religion or socio-economic status.
- About 5,000 people are born with Down syndrome in the U.S. each year.
While age in the mother can be a factor, 80% of people with Down syndrome are born to mothers under 35, the average age being 26.
- Down syndrome occurs evenly in males and females.
- Down syndrome results in some degree of developmental disability and there may or may not be other medical issues.
- Life expectancy for an individual with Down syndrome is on average 55-60 years.
What we know about people with Down syndrome
- Every person with Down syndrome is unique, with his/her own personality, talents and thoughts.
- People with Down syndrome are more similar to other people than they are different.
- They thrive in loving homes and benefit from early intervention, medical care and positive public attitudes.
- They can attend neighborhood schools with their peers.
- They are holding competitive jobs and living in the community.
- They are dancers, skiers, swimmers, office workers, childcare providers and so much more……
Community acceptance flyers/handouts for supporters
List resources for parents of children with disabilities
Adjusting to and understanding a prenatal diagnosis
- Down Syndrome Pregnancy (U of Kentucky program)
- Download FREE booklet “Understanding a Down Syndrome Diagnosis”
- DSDN – Down Syndrome Diagnosis Network
- Brighter Tomorrows – Information about Down Syndrome for families who have just received a diagnosis
- Dear Future Mom (video)
- Light at the End of the Tunnel
- The unexpected – Stories of a Down Syndrome Diagnosis
- For Family Members – Your Loved One is Having a Baby with Down Syndrome
New parents resources
Enrichment and local therapeutic services
- DSACNJ / Club DREAMS – Ewing, NJ
- Schafer Sports Center Special Needs Programs – Ewing, NJ
- Miracle League Mercer County NJ – Baseball Program
- Young Athletes Program – Special Olympics New Jersey
- Gigi’s Playhouse Achievement Center – Hillsborough, NJ
- Therapeutic Horseback Riding with an Occupational Therapist – Pennington, NJ
- 21 Plus – Social, respite, Residential, Adult training (Toms River, NJ)
- Allies Inc, Dedicated to housing, employment and recreational support (Hamilton, NJ)
- Disability Allies- Teen and Adult Recreational, socialization, and Transitional Services (East Brunswick, NJ)
- NJ Mentor – Day Program/Community Program/Residential
- Easter Seals – Day Training Programs/Residential Group Homes
- Mt. Bethel Village – Day/Residential Programs (Warren, NJ)
- The Arc Programs/Recreations/Residences in State of NJ
- Transportation Services
- Resume Building Guide for People with Disabilities
New Jersey organizations
- New Jersey Early Intervention System
- NJ Dept of Children & Families – Perform Care (to age 21)
- NJ DDD – Division of Developmental Disabilities (age 21+)
- The Arc of New Jersey
- The Arc Mercer
- SPAN Parent Advocacy Network
- Mercer County Family Support Organization
- NJCIE – New Jersey Coalition for Inclusive Education, Inc.
- Special Olympics New Jersey
- Useful site for links to NJ resources (sports, therapy, etc.)
- Health Supervision for Children with Down syndrome, American Academy of Pediatrics Journal
- Updated growth chart for Down Syndrome
- NDSS Down Syndrome Health Care Guidelines
- Children’s Hospital of Philadelphia’s Trisomy 21 Program
- The JUDY Center for Down Syndrome (at Hackensack University Medical Center)
- Down Syndrome: Health Issues – Dr. Len Leshin
- LuMind Foundation (Down syndrome cognition research)
- NVISION Eyesight & Down Syndrome
- Dental Health Guidance
Other NJ / PA support groups
- 21 Down
- Billy’s Buddies (offered through YMCA of Wyckoff, NJ)
- Bringing Up Down Syndrome of Southern New Jersey
- Central New Jersey Down Syndrome Parent Advocacy Group
- Down Syndrome Group of Northwest New Jersey
- Family Resource Associates, Inc.
- Jersey Shore Down Syndrome Association
- KIIDS (Knowledge and Information About Individuals With Down Syndrome)
- Network 21
- PA – Bucks County Down Syndrome Interest Group
On-line down syndrome discussion groups
- Global Down Syndrome Foundation
- DSE – Down Syndrome Education International
- National Down Syndrome Society
- National Down Syndrome Congress
- National Association for Down Syndrome
- College Options for People With Intellectual Disabilities
- Woodbine House (closed) – Special Needs Collection of Books and DVDs available on Amazon
- Spanish Bienvenidos a Holanda
- Spanish NDSC Información sobre el síndrome de Down
- Spanish NDSC Síndrome de Down
- Spanish Primeras Preguntas
- Spanish Un bebé es ante todo un bebé
- Spanish Folleto de regalos
- Spanish Expectativas de desarrollo y problemas medicos
- Spanish Folleto sobre pruebas prenatales
- Spanish Una Luz al Final del Tunel prenatal diagnosis
- Spanish AAP Pautas
- Spanish DS Pautas de atención médica
- Spanish Información sobre la salud para las familias
- Spanish Aproveche al maximo la hora de jugar
- Spanish Estimule a su hijo
- Spanish Habilidades de la motricidad gruesa en los ninos con sindrome de Down
- Spanish Habilidades de la motricidad gruesa en los ninos con sindrome de Down 2da parte
- Spanish Como pueden ayudar los abuelos
- Spanish Los abuelos en primer plano
- Spanish El rol de los abuelos
- Spanish Pensando en el manana la transicion hacia la vida adulta
- Spanish Pautas sobre salud dental (Google translation)