Below are some additional resources and links that will be helpful throughout the parent’s journey:
Healthcare Guidelines/Medical Resources
- Down syndrome Health Care Guidelines (1999 Revision): Birth to Age 12 Years
- Down Syndrome Health Care Guidelines (1999 Revision): 13 years to Adulthood
- Healthcare Guidelines for Individuals with Down Syndrome, Down Syndrome Quarterly, Volume 4, Number 3, 1999.
- Healthcare Guidelines from American Academy of Pediatrics. These guidelines are designed to assist the pediatrician in caring for the child with Down syndrome.
- National Down Syndrome Society (www.ndss.org )
- National Down Syndrome Congress (www.ndsccenter.org)
- www.ds-health.com- News and Information for Parents and Professionals, Len Leshin, M.D. and Father of a son with Down syndrome.
National & Local Down Syndrome Organizations
- National Down Syndrome Society- www.ndss.org
- National Down Syndrome Congress- www.ndsccenter.org
- National Association for Down Syndrome- www.nads.org – primarily serving the Chicago Metropolitan area.
- United Parent Support for Down Syndrome- www.upsfordowns.org
- Down Syndrome Development Council- www.theddc.org
- Gigi’s Playhouse- www.gigisplayhouse.org
- Dad’s Appreciating Down Syndrome- www.dadsnational.org . There is also a Chicagoland D.A.D.S. chapter, for more information, contact NADS
- Down in the Southland - www.downinthesouthland.org
Expectant Parent Resources
- Brighter Tomorrows:
Brighter Tomorrows provides families with balanced and accurate information about receiving a diagnosis of Down syndrome during pregnancy or at birth.
- The Light at the End of the Tunnel:
Written for parents who had a prenatal diagnosis and was produced through a collaboration between NDSC and the Orange County parent support group.
Diagnosis to Delivery- A Pregnant Mother’s Guide to Down Syndrome.
Books for Parents and Families
- Pueschel, S. M. A Parent’s Guide to Down Syndrome: Toward a Brighter Future. Second Edition, (2000) www.brookespublishing.com
- Skallerup, Susan J. Babies with Down Syndrome: A New Parents’ Guide. Third Edition, (2008) www.woodbinehouse.com
- Soper, K. Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. (2007) www.woodbinehouse.com
- Soper, K. Gifts 2: How Children with Down Syndrome Enrich The World. (2009) www.woodbinehouse.com
- Kidder, C. and Skotko, B. Common Threads: Celebrating Life with Down Syndrome. (2001) www.bandofangels.com
Books For and About Siblings
For younger children:
- We’ll Paint the Octopus Red, Stephanie Stuve-Bodeen
- The Best Worst Brother, Stephanie Stuve- Bodeen
- I Can, Can You?, Marjorie W. Pitzer
- My Friend Isabelle, Eliza Woloson
- My Friend Has Down Syndrome, Jennifer Moore-Mallinos
- My Sister, Alicia May, Nancy Tupper Ling
For older children and Teens:
- Gallagher, P.A. Powell, T.H. and Rhodes, C.A. Brothers and Sisters: A Special Part of Exceptional Families. 3rdEdition. (2006) www.brookespublishing.com
- Hughes, M. Special Siblings Growing Up with Someone with a Disability. Revised Edition. (2002) www.brookespublishing.com
- Levine, S. and Skotko, B. Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. (2009) www.woodbinehouse.com
- Meyer, D. and Vadasy, P. Living with a Brother or Sister with Special Needs: A Book for Sibs. Second Edition (2000) University of Washington Press
- Meyer, D. (Ed). The Sibling Slam Book: What It’s Really Like to Have a Brother or Sister with Special Needs. (2004) www.woodbinehouse.com
- Meyer, D. (Ed). Views From Our Shoes: Growing Up with a Brother or Sister with Special Needs. (1997) www.woodbinehouse.com
Finding Educational Tools-Right from the Start!
- Gross Motor Skills for Children with Down syndrome: A Guide for Parents and Professionals. Patricia C. Winders
- Fine Motor Skills for Children with Down syndrome: A Guide for Parents and Professionals. Maryanne Bruni
- Toys R Us Guide For Differently-Abled Kids (also included in the NADS New Parent packet of information) - includes a catalog for stimulating toys to meet the goals of early intervention.
- Beyond Play Website- www.beyondplay.com (also included in the NADS New Parent packet of information) – includes a catalog for stimulating toys to meet the goals of early intervention.
- Signing Time- www.signingtime.com- includes flashcards, videos, books and music aimed at teaching American Sign Language (ASL) to a young child.
- See and Learn Kits- www.seeandlearn.org- materials aimed at teaching young children with Down syndrome speech, reading and cognition skills
- Talk Tools Website- www.talktools.com- includes a catalog to purchase items for your baby to encourage speech and focus on oral motor stimulation.