The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
666 Broadway, 8th Floor
New York New York 10012
800-221-4602
info@ndss.org 

Caring for Your Family

How Will Having a Child with Down Syndrome Affect My Family? 

One of the best ways to find an answer to this question is by speaking to family members of individuals with Down syndrome. In addition, there are many books and articles written by family members about their personal experiences. A message from families that is echoed again and again is that the positive impacts of having a member with Down syndrome far outweigh any difficulties or challenges that may come up. The majority of families share that they are stronger and closer as a result of the experience of dealing with a disability, and that they are more focused on the things that really matter in life.

There have also been many research studies that explore how having a child with Down syndrome affects families. These have shown that while these families do experience additional challenges, their levels of well-being are comparable to families who do not have a child with Down syndrome. Researchers say that what seems to determine if families are resilient and able to thrive is their ability to access individual, family and community resources.

How Will Having a Sibling with Down Syndrome Affect My Other Children?  

While having a sibling with Down syndrome may present unique challenges, it also provides many opportunities for children’s positive growth and character development. Studies have shown that children who have a brother or sister with Down syndrome can benefit in many ways. For example, these children often exhibit a level of maturity above that of their peers and tend to have more highly-developed communication and social skills. The experience and knowledge gained by having a sibling with Down syndrome also seems to make children more accepting and appreciative of differences. They tend to be more aware of the difficulties others might be going through, and often surprise parents and others with their wisdom, insight and empathy.

Brothers and sisters of an individual with Down syndrome are also very much aware of their sibling’s challenges and thus, often take a tremendous amount of pride in his or her accomplishments. In addition, parents often report that no matter what issues siblings may have with their brother or sister with Down syndrome at home, outside the home they are typically very loyal to their sibling and do their best to defend and protect him or her.

What Are Some Tips for Taking Care of My Other Children's Needs? 

Your children may be doing an excellent job of helping with their brother or sister with Down syndrome, but you want to make sure you are doing all you can to meet their needs as well.

Tips for caring for siblings

  •  Be sure to acknowledge all emotions, not just the positive ones. If your children know that it is ok to express any feelings they may be having about their sibling with Down syndrome, negative emotions are less likely to turn up in other ways, such as behavior problems.
  • While it can be beneficial for your other children to feel that they can play an important role in caring for their sibling, don’t give them too many responsibilities in this area.
  • Although your responsibilities may pull you in many different directions, pay attention to your children and any changes in their moods. If you notice symptoms of anxiety or depression, get your child the help he or she needs as early as possible.
  • Make an effort to spend time with each of your children on a regular basis. Each child is unique, so don’t worry about dividing your time equally. Instead, focus on what’s important to an individual child, and dedicate time to those things that would make him or her feel loved or special. Remind your children that all members of your family are special in their own way.

How Can I Keep My Relationship with My Partner Strong? 

There are many things you can do to keep your relationship strong amidst the added stresses that may come with raising a child with a disability. Two key strategies often mentioned by parents are maintaining good communication and spending time alone together. So take a few minutes every day to talk with your partner. Plan a regular “date night.” Or, take a vacation together. Even if you can’t get away as often as you might like, make an effort to keep your romance alive. Don’t let anniversaries or other special occasions go uncelebrated, and do little things to show your partner that you care and appreciate all of his or her hard work. A loving relationship is one of the best sources of strength and support for dealing with any challenges that come your way.


NDSS Resources

External Resources

  • Dads Appreciating Down Syndrome (D.A.D.S.) National
    www.dadsnational.org
    888-989-9255
    Provides community support and a peer network for fathers of children who have Down syndrome
  • Down Syndrome Radio
    itunes.apple.com/us/podcast/downrightawesome-down-syndrome/id535852575
    Offers a periodic podcast about raising children with Down syndrome from a dad's perspective
  • DS-Health
    www.ds-health.com/lists
    Compiles Down syndrome email lists, newsgroups and bulletin boards
  • Exceptional Parents
    eparent.com
    Publishes a monthly magazine and maintains online resources to provide practical advice, emotional support and up-to-date information to the parents of special needs children
  • Family Village Online
    www.familyvillage.wisc.edu

    Integrates resources and communication opportunities on the Internet for persons with cognitive and other disabilities
  • Little Hearts
    www.littlehearts.org
    866-435-4673
    Provides support, education, resources, networking and hope to families affected by congenital heart defects
  • Mended Hearts
    www.mendedhearts.org
    888-432-7899
    Supports parents of children with heart defects by providing resources and a support network
  • MUMS: National Parent to Parent Network
    www.netnet.net/mums
    Matches parents of children with disabilities (often rare) with other parents whose children have the same or similar condition
  • The Caregiver Action Network
    caregiveraction.org
    877-336-5333
    Works to serve caregivers by offering education, peer support, and resources
  • National Fathers Network
    www.fathersnetwork.org
    Provides support and resources for fathers and families of children with disabilities
  • National Organization of Mothers of Twins Clubs
    www.nomotc.org
    Offers online support for mothers of multiples 
  • National Respite Locator Service
    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.org
    888-248-0822|
    Offers publications, workshops and other resources to help parents make decisions for their children with disabilities
  • Parenting Special Needs
    parentingspecialneeds.org

    Publishes an online magazine designed to bring inspiration and information the parents of children with special needs
  • Parent to Parent USA
    www.p2pusa.org
    Provides 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.org
    Dedicated to the to concerns of brothers and sisters of individuals with special needs; also has a list serve through which parents can connect
  • Specialized Training of Military Parents (STOMP)
    www.stompproject.org
    800-572-7368
    Established to assist military families who have a child with a disability
  • Through the Looking Glass
    www.lookingglass.org
    Provides research, training, and services for families in which a child, parent or grandparent has a disability or medical issue
  • ¡Uno Mas!
    www.unomas21.com
    Offers support, advice, and online discussion groups to parens 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)
  • Optimistic Parenting: Hope and Help for You and Your Challenging Child. Durand, M. V.Baltimore, MD: Brookes Publishing. (2011)
  • 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

  • 47 Strings: Tessa’s Special Code. Carey, B. Mineral Point, WI: Little Creek Press. (2012)

  • 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)
  • Buddy Walk
  • NDSS Yourway
  • My Great Story