External Resources
- Dads Appreciating Down Syndrome (D.A.D.S.) National
www.dadsnational.org888-989-9255
D.A.D.S. is a committee or community group (within a local Down syndrome support organization) of fathers of children who happen to have Down syndrome. D.A.D.S holds community meetings which often feature expert speakers and always involve sharing intimate stories and experiences unique to fathers.
- Down Syndrome Radio
http://downrightawesome.com
A podcast on rasing children with Down syndrome from a dad's perspective
- DS-Health
http://www.ds-health.com/lists.htm
A compilation of Down syndrome email lists, newsgroups and bulletin boards compiled by Dr. Len Leshin.
- Family Village Online
www.familyvillage.wisc.eduA global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities.
- Little Hearts
www.littlehearts.org866-435-4673
Provides support, education, resources, networking and hope to families affected by congenital heart defects
- Mended Little Hearts
www.mendedhearts.org888-432-7899
A support program for parents of children with heart defects, offering resources and a support network
- MUMS: National Parent to Parent Network
www.netnet.net/mumsMatches parents of children with disabilities (often rare) with other parents whose children have the same or similar condition
- National Family Caregivers Association
www.thefamilycaregiver.org877-336-5333
A caregiving advocacy organization whose website features links to information and resources, a volunteer network, and supporting messages and philosophies
- National Fathers Network
www.fathersnetwork.orgProvides support and resources for fathers and families of children with disabilities
- National Organization of Mothers of Twins Clubs
www.nomotc.orgOffers online support for mothers of multiples
- National Respite Locator Service
http://archrespite.org/respitelocator
800-473-1727
Helps parents, family caregivers, and professionals find respite services in their state and local area to match their specific needs
- Parent Advocacy Coalition for Educational Rights (PACER Center)
www.pacer.org888-248-0822
Parents can find publications, workshops, and other resources to help make decisions for their children with disabilities
- Parent to Parent USA
www.p2pusa.orgProvide emotional and informational support to families of children who have special needs by matching parents seeking support with a trained “Support Parent”
- Sibling Support Project
www.siblingsupport.orgA national effort dedicated to concerns of brothers and sisters of individuals with special needs
- Specialized Training of Military Parents (STOMP)
www.stompproject.org800-572-7368
Established to assist military families who have a child with a disability
- Through the Looking Glass
www.lookingglass.orgA nationally recognized center that has pioneered research, training, and services for families in which a child, parent or grandparent has a disability or medical issue
- ¡Uno Mas!
www.unomas21.comAn online Down syndrome support group that offers support, advice, and discussion groups to parent and expectant parents of children with Down syndrome
BOOKS FOR PARENTS AND FAMILIES
- Babies with Down Syndrome: A New Parents' Guide. Third Edition. Skallerup, Susan J. (Ed.) Bethesda, MD: Woodbine House. (2008)
- Bloom: Finding Beauty in the Unexpected - A Memoir. Hampton, Kelle. New York, NY: Harper Collins. (2012)
- Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier. Hale, N. Bethesda, MD: Woodbine House. (2011)
- Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. Soper, K. (Ed.) Bethesda, MD: Woodbine House. (2007)
- Gifts 2: How Children with Down Syndrome Enrich the World. Soper, K. (Ed.) Bethesda, MD: Woodbine House. (2009)
- Married with Special-Needs Children: A Couples' Guide to Keeping Connected. Marshak, L. and Pollack Presant, F. Bethesda, MD: Woodbine House. (2007)
- More Than a Mom: Living a Full and Balanced Life When Your Child Has Special Needs. Baskin, A. and Fawcett, H. Bethesda, MD: Woodbine House. (2007)
- A Parent's Guide to Down Syndrome: Toward a Brighter Future. Second Edition. Pueschel, S. M. Baltimore, MD: Brookes Publishing. (2002)
- Uncommon Fathers: Reflections on Raising a Child with a Disability. Meyer, D. (Ed.) Bethesda, MD: Woodbine House. (1995)
BOOKS FOR AND ABOUT SIBLINGS
- The Best Worst Brother. Stuve-Bodeen S. Bethesda, MD: Woodbine House. (2005)
- Brothers and Sisters: A Special Part of Exceptional Families. Gallagher, P.A., Powell, T.H. and Rhodes, C.A. Third Edition. Baltimore, MD: Brookes Publishing. (2006)
- Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. Levine, S. and Skotko, B. Bethesda, MD: Woodbine House. (2009)
- Living with a Brother or Sister with Special Needs: A Book for Sibs. Second Edition. Meyer, D. and Vadasy, P. Seattle, WA. University of Washington Press. (2000)
- The Sibling Slam Book: What It's Really Like to Have a Brother or Sister with Special Needs. Meyer, D. (Ed.) Bethesda, MD: Woodbine House. (2004)
- Special Siblings Growing Up with Someone with a Disability. Hughes, M. Revised Edition. Baltimore, MD: Brookes Publishing. (2002)
- Supporting Siblings and Their Families During Intensive Baby Care. Rector, L. Baltimore, MD: Brookes Publishing. (2007)
- Thicker Than Water: Essays by Adult Siblings of People with Disabilities. Meyer, D. (Ed.) Bethesda, MD: Woodbine House. (2009)
- Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs. Meyer, D. (Ed.) Bethesda, MD: Woodbine House. (1997)
- We’ll Paint the Octopus Red. Stuve-Bodeen, S. and DeVito, P. Bethesda, MD: Woodbine House. (1998)
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