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Information for Family and Friends

When there is a diagnosis of Down syndrome a lot of people have no idea what to say or how to react. How you react when a friend or a family member tells you that their baby has Down syndrome is very important and your reaction will live with that person always.

Because your reaction is so important please take a moment to read the information below kindly provided by the New Zealand Down Syndrome Association.
 
I don't know what to say...
It can be very difficult for you when your friend or family member has just had a new baby with Down syndrome. Not only do you have to deal with your own emotions and attitudes about a baby with Down syndrome, but also your sadness for your best friend or relative. Your support at this time will be very important to your friend or relative and can lead to a much stronger and deeper relationship.

Avoid saying:
  • Anything that conveys pity: "What a shame." "How sad." "Poor thing." “I’m sorry.”
  • Statements like: "It could be worse." or "Down syndrome is the best disability to have". At this time nothing could be worse to the parents.
  • Anything that puts blame on the parents: "What do you expect at your age?" "Why didn't you have an amnio?"
  • Explanations for why this happened: "It only happens to special people."
  • Anything that conveys sainthood: "I couldn't handle it." "You must be a saint."
Parents like to hear:
  • Congratulations!
  • Compliments: "She's a wonderful baby." "What a beautiful boy."
  • Noticing similarities between parents and the child:  "Gosh, I can see his Dad in him." "She's got your beautiful eyes."
  • Your acceptance of the baby: "Can I hold him?"
  • Acknowledgement of their grief: "I know I can't take the hurt away but I wish I could." "I can't imagine what your family is going through; I don't understand but you have my support.”
What about the baby's parents…?
Remember the new parents are still the people you know and love.

Most new parents go through a grief process as they would if their baby had died. In a way, a baby has died; the dream baby they had imagined for nine months or more; the baby without Down syndrome. The grief process may include denial, anger, bargaining, depression, and acceptance.

At the same time as grieving for the loss of their dream baby, our new parents develop feelings of love and joy for their actual baby. The baby who is the problem will become the solution.
What should I do?

Actions speak louder than words

Actually being there and doing something will make more of an impact than any words you could say. Hug the parents, offer meals and baby-sitting, don't just say "let me know if you need anything".
 

Follow the lead of your friend or relative

Sometimes new parents need to talk about Down syndrome; sometimes they need to talk about something totally different.
Sometimes new parents need to be sad and cry; other times they want to remember the ordinary things of everyday life.
 

Learn about Down syndrome

Do not rely on outdated information or myths. Read some of the information available on this site. Only pass the information on to your friend if asked!
Be available; if you avoid your friend or relative you will miss out on getting to know an exceptional person ... the new baby.
 
 
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