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How to talk about

Always remember that people tend to take your behaviour, reactions and attitudes as an indication of how they should react to you. Using the correct terminology will be showing that you value your child. Family and friends will usually want to support you, and if you are able to focus on positive aspects of caring for your new baby, they will likely want to share in your joy!

TIPS FOR PARENTS: SHARING THE DIAGNOSIS WITH OTHER FAMILY MEMBERS AND FRIENDS

Inform yourself as fully as you can about Down syndrome by reading and through discussion, but keep your explanations to your children, family and friends simple and straightforward. Tell everyone concerned as soon as possible.  The longer you wait, the more difficult and awkward it will become .Not only will waiting add to the stress that you may already be dealing with, but you will likely miss out on the comfort and support your loved ones might be able to provide during this time.

An example of a simple explanation you could give to older family members and friends is: “Our child has Down syndrome. It is a chromosomal disorder and he will be a child with a disability.”

Always remember that people tend to take your behaviour, reactions and attitudes as an indication of how they should react to you. Using the correct terminology will be showing that you value your child. Family and friends will usually want to support you, and if you are able to focus on positive aspects of caring for your new baby, they will likely want to share in your joy! You should also consider offering friends and family members information about the developmental aspects of Down syndrome so that they, too, can share in celebrating your baby’s accomplishments.

Understand that many people may feel awkward about speaking to you and will sometimes be clumsy in what they say. Sometimes you may have to correct them gently. Speak openly about your child and your friends will feel more and more at ease with the situation. If someone does not react in the way you would hope, remember that he or she may have personal reasons for doing so that have nothing to do with you or your baby. People may be uncomfortable because they don’t have accurate information about Down syndrome or have never met someone with the condition. It is possible that they may also be dealing with their own grief or pain.

Grandparents, for example, may be dealing not only with the news that their grandchild has a disability, but also with the knowledge that their child is in pain. Just as new parents often go through the stages of grief, grandparents may also go through shock, denial and other emotions before they are able to accept the news. It is important to let them deal with their emotions at their own pace so they can also heal and begin to find joy in helping to raise their grandchild. Support group membership is usually open to grandparents and other relatives, so you might consider letting them know that it’s an option available to them.

Don’t be afraid of sharing your emotions with your trusted friends and family members. They are often eager to provide emotional support or other assistance. Give your family and friends the opportunity to hold your baby and play with him, or ask them to baby-sit for you if necessary. If you share your feelings honestly and openly, you create opportunities for them to do so. Remember that whenever you do turn to others for assistance, it’s a good idea to be specific about how much help you want or need, and what your needs are.

Your children, family and friends will mostly reflect your own attitude. If you cope with the situation effectively, most other people will to.

HOW TO TALK ABOUT DOWN SYNDROME
The preferred language when referring to Down syndrome and people who have Down syndrome

  • 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.
  • “Typically developing” or “typical” is preferred over “normal.”
  • “Intellectual disability” or “cognitive disability” is the appropriate terms.
  • Down vs. Down’s – While Down syndrome is often used with or without an apostrophe s, the preferred usage is Down syndrome. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. An “apostrophe s” connotes ownership or possession.