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 

Finding Support

Is What I’m Feeling Normal?

Learning that your baby has Down syndrome is not an easy thing for anyone to face, and right now you may be experiencing a roller coaster of emotions. While everyone handles the diagnosis in their own way, certain reactions are common in new or expectant parents of a child with a disability.

For the majority of parents, the period immediately following the diagnosis is filled with uncertainty and doubt. For example, you might worry about how the condition will impact your child’s life and whether or not you are equipped to handle all the responsibilities of raising a child with a disability. If your child has health complications, you may have additional fears and concerns. It is natural to experience denial, anger, depression and other stages of grief as you adjust to the news that your baby has Down syndrome. Even for parents who knew they were at a higher risk of having a child with Down syndrome, acceptance can be difficult or, at first, seem impossible.

Know that whatever you may be feeling is normal. More importantly, know that you are not alone. There are many sources of support available to new parents of children with Down syndrome. In time and with the right support, you can expect the intensity of painful emotions to subside, and new, positive feelings to take their place. One of the best places to turn to for encouragement and reassurance is other parents of children with Down syndrome. Often, other parents can help you look beyond your baby’s diagnosis and delight in the joys of parenthood. They have been through what you are going through, and can be an invaluable source of support.

How Can I Get In Touch with Other Parents of Children with Down Syndrome?

One of the best ways to meet other parents is to get involved in a local Down syndrome parent support group. These groups can provide you with an excellent forum for sharing your feelings and concerns as a new parent, and an opportunity to learn from the experiences of others who have been in your shoes. Learning more about Down syndrome can also help ease some of your uncertainty, and support groups are a great place to start gaining knowledge. In addition to providing emotional support, other parents can recommend useful Down syndrome resources and help you understand the new terminology.

NDSS has a network of more than 375 affiliates. In addition to having support group meetings, most affiliates offer a wide range of programs and services for individuals with Down syndrome and their families, such as sibling workshops, expert-speaker presentations, early intervention programs, social activities and events to raise public awareness. Support group membership can provide benefits to you and your family now and in the future, so we encourage you to contact your local group and explore this option.

If there is no Down syndrome-specific support group in your area, your hospital or pediatrician may be able to provide contact information for other parents who have agreed to serve as a resource. There may also be a general support group for parents of children with disabilities that you can join. Alternately, you may consider starting your own support group to network with others. NDSS can provide you with information on how to get started.

What Are Some Other Things I Can Do to Take Care of Myself?

Right now, you are very focused on taking good care of your baby. But remember that it’s also important to take good care of yourself at this time. Doing so will keep you feeling healthy, strong and well-equipped to deal with your responsibilities as a new parent. It can also help you develop and maintain a positive frame of mind, which is necessary for meeting new challenges successfully. Here are some tips many new parents have found helpful for reducing anxiety and stress:

Be Patient with Yourself

The road to acceptance is a process, so give yourself time to deal with your emotional responses. Some days you might feel like you’re taking steps backward, but recognize that this doesn’t mean you aren’t making progress. If you feel it would be helpful, do not hesitate to contact a therapist. A therapist can help you find ways to cope and develop confidence in your ability to handle challenges.

Build a support system

It may be tempting to keep to yourself at this time, but doing so can result in feelings of isolation. Reach out to trusted friends or family members. This allows your loved ones to understand what you’re going through and gives them a chance to offer comfort and support. You can always let them know how much help you need or desire, and if you want time alone, don’t hesitate to say so.

Schedule some alone time regularly, and use this time to “recharge.” Read a book, take a warm bath, go for a walk, or just watch your favorite T.V. show. Do something you enjoy and find relaxing, and let yourself enjoy it. Alone time may sound like a luxury, but it is necessary for good health and can do wonders for your productivity and mood.

Take care of your physical health

Research shows that a healthy eating and exercise plan can reduce fatigue, irritability, and risk for certain diseases and health complications. Develop a plan that works for you and make an effort to stick to it, especially during times of high stress. Be sure to get regular medical check-ups, too.

Practice “living in the moment”

While it is important to plan ahead, worrying about the future can easily lead to anxiety. Although it may be hard, try to focus only on what you can do realistically in the present. If you find yourself getting anxious about a particular situation, try this strategy:

  1. Identify the problem
  2. Research your options
  3. Make a decision
  4. Set a date in the future to evaluate how your decision is working

In the meantime, just go with the decision you made and trust that it will work out.

Don’t lose sight of “the important things in life”

Nurture your relationships with your partner, children, friends and family. Communicate with each other, laugh, do fun things together, celebrate traditions, and be sure to spend quality time with your new baby that doesn’t focus on his or her disability. The fact that your baby has Down syndrome is life-changing. But it doesn’t change the things that are truly important in life!


NDSS RESOURCES

EXTERNAL RESOURCES

  • D.A.D.S. (Dads Appreciating Down Syndrome)
    www.dadsnational.org
    Support for fathers of children and adults with Down syndrome
  • DS-Health
    www.ds-health.com/lists
    A compilation of Down syndrome email lists, newsgroups and bulletin boards compiled by Dr. Len Leshin
  • National Family Caregivers Association
    www.thefamilycaregiver.org
    Caregiving advocacy organization with tips and statistics on caregiving in America

  • Washington State Fathers Network
    www.fathersnetwork.org
    Provides support and resources for fathers and families of children with disabilities
  • Parent to Parent USA
    www.p2pusa.org
    Provide 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
    A national effort dedicated to concerns of brothers and sisters of individuals with special needs

BOOKS

  • Common Threads: Celebrating Life with Down Syndrome. Kidder, C., Skotko, B., and Dew, K. Rochester Hills, MI: Band of Angels Press. (2007) 
  • Count Us In: Growing Up with Down Syndrome.  Kingsley, J. and Levitz, M. New York, NY: Mariner Books. (2007)
  • 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)
  • More Than a Mom: Living a Full and Balanced Life When Your Child Special Needs. Baskin, A. and Fawcett, H. Bethesda, MD: Woodbine House. (2007)
  • Road Map to Holland: How I Found My Way Through My Son’s First Two Years with Down Syndrome. Graf Groneberg, J. New York, NY: New American Library. (2008)
  • A Room of Golden Shells: 100 Works by Artists and Writers with Down Syndrome. Bethesda, MD: Woodbine House. (2013)
  • Buddy Walk
  • NDSS Yourway
  • My Great Story
  • NDSS DS-Ambassadors