About Down Syndrome

What is Down syndrome?

Down syndrome is the most commonly occurring chromosomal condition.  One out of every 733 births is blessed with a baby born with Down syndrome. Typically, babies receive 23 chromosomes from the mother and 23 from their father.  Down syndrome occurs when a baby is born with three copies of the 21st chromosome. That is why Down syndrome is also called Trisomy 21.   This additional chromosome affects development and physical characteristics.  However, every individual inherits many physical and personality characteristics from their parents as well.

There is no known reason for a baby to be born with Down syndrome.  It occurs in people of all races and economic levels.  The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.

People with Down syndrome live full and rich lives.  They attend school and work, participate in sports, and give back to their communities.  They are active participants in decisions that affect their lives. While they all experience cognitive delays, these are usually mild to moderate.  Every person with Down syndrome possesses strengths and talents that make him/her a valuable asset to every family and community.

Frequently asked questions

NDSS (National Down Syndrome Society) Q & A

Preferred Language Guide

Below is the proper use of language for “Down syndrome”:

• Down vs. Down’s – NDSS uses the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome.  This is because an “apostrophe s” connotes ownership or possession.  Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.  The AP Stylebook recommends using “Down syndrome,” as well.
• People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
• Down syndrome is a condition or a syndrome, not a disease.  People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
• It is clinically acceptable to say “mental retardation,” but you should use the more socially acceptable “intellectual disability”.
• See NDDS for more

Person-First Language Guide

We at DSACK want to promote the use of correct language when speaking or writing about an individual with Down syndrome or any disability.  Always place the person before the disability emphasizing the person first and the disability second. For instance, do not refer to a baby born with Down syndrome as a “Down’s child”, rather refer to the child as a baby born with Down syndrome.

When referring to peers or siblings, please use the term “typical” rather than “normal”.  After all, who or what defines “normal”?

People are much more than a label or a stereotype.  Please educate your family, friends, educators, and physicians regarding the correct way to refer to your loved one.

For Families

It is so very important for you as grandparents, uncles, aunts, cousins, etc. to surround your loved ones with encouragement and support.  The new parents are frightened about their child’s future, and more than ever they need to know that they are not dealing with this alone.  You are all on a new, exciting journey.  Come along beside the parents and enjoy the many blessings you will receive from this beautiful new baby!

Following are some helpful suggestions when talking to the new parents.  These suggestions have come from parents of children with Down syndrome based on their experiences.

Things NOT to say

The following statements are typically made lovingly and with the best intentions. However, many parents find that these words do not make them feel any better. In fact, the parents may feel worse upon hearing these words.

• “I’m sorry” or any form of pity. The parents need love and acceptance of their new baby. Congratulate them instead!
• “God gives special parents special children” or any variation.  Trying to make them feel better with words like these might be appreciated by some parents and not by others.
• “They’re such loving children.” This is a stereotype of children with Down syndrome and diminishes the individuality of each child.
• “Do they know how serious it is?” or any variation. Health concerns do vary with each individual who has Down syndrome, and some may be serious.   Just as in the general population, there is also great variability among people with Down syndrome.  People with Down syndrome are unique individuals with unique abilities, personalities, interests, appearances, etc.
• “You are handling this better than I could.” This statement might make the baby’s birth sound like a tragedy. Again, the parents need love and acceptance of their new baby. Congratulate them instead.

Things to say

These are the things parents have found comforting or made them feel good:

• “Congratulations.” They just had a baby! What better response to show that you love them and their baby than to say congratulations.  It made us feel like ‘normal’ parents when someone said that to us.  If the hospital allows it, a bottle of champagne could be greatly appreciated.
• “He/She looks just like you.” The baby probably does look like someone in the family.  All of the baby’s genes are from the family.  My son looked exactly like my daughter did when she was just born.
• Friends and family who actually ‘did’ something like read about the disability (or find information on the web!).  This really means something to the new parents. It shows love and concern for the baby.  The day after we told Mikey’s uncle about Mikey having Down Syndrome, he came to visit us with a handful of papers dealing with Down Syndrome he had gotten from the web.  That showed us that he really cared.
• Offer to babysit.  It is a fear of the new parents that their family will not accept the new baby. By saying something like, “Well, when are you going to let me babysit?” you are showing the new parents that you want to be part of the baby’s life. This will be a great relief to them.
• “He/She will do fine.” The new parents are probably pretty worried. They might not know much about Down syndrome and they may be concerned about possible medical problems. Having a positive attitude will rub off on them. They don’t need pessimism or negativity from their loved ones.
• “We’ll all learn from him/her.”  This is another good way to show that you intend on being part of their lives. After all, how can you learn from their new baby if you are ashamed of him/her? Their new child will be an opportunity to learn about love, acceptance, and respect for the disabled.
• “We will always be here to help.”  Another very good way to show that you are going to be there. Let the new parents know that you intend on being part of their lives.