How should we react if a baby with Down syndrome is born to someone close to us?
Most friends respond to the news of the new arrival from parents in a positive way, some avoid it and some apologise. The bottom line is people don't know what to say, consequently they unintentionally resort to cliches and sorrow which can be hurtful.
Here are some suggestions for do's and don'ts when a friend or relative tells you his or her baby has Down Syndrome.
Things that parents want to hear:
"Congratulations" first and foremost. This conveys acceptance which is very important to new parents.
Ask the normal questions you would ask any new parent (feeding, sleeping, weight, ask for pictures, etc.)
In most cases, actions speak louder than words. Friends and relatives that actually do something make more of an impact than any words they could have said. Meals, babysitting, friends who actually take the time to learn about the disability by researching it. Offering to look up information on the Internet if they don't have access. Concrete things, not 'let me know if you need anything'. Be available.
"She's a wonderful baby and lucky to have parents like you."
"Can I hold her?"
Acknowledgement of the emotions and feelings parents may be having:
"This was probably a big shock, and it will take some time for things to feel in balance again."
"I know I can't take the hurt away but I wish I could."
A card might read "Thinking of you...we love you and love your baby"
Things parents hate to hear:
"I'm Sorry." "What a Shame." "How sad." "Poor thing.". "It could be worse".
Or any statement that conveys or infers pity.
Questions like "How severely is he affected?" or "Didn't you have the tests?"
Statements like "God gives special children special parents."
Sainthood statements. Don't tell parents "I couldn't do it." I couldn't handle it." "You're a saint." Statements like these imply that people with a disabilities are a huge burden.
Stereotypical statements like "They're such happy and loving children." Such comments are just not helpful and not true.
Downsyndromepregancy provides helpful free downloadable resources for family and friends, “Your Loved One is Having a Baby with Down Syndrome.”, or family & friends archives
5 Compliments You Need to Stop Giving About Children with Down Syndrome - a blog by Lexi Sweatpants
Down the track
Most parents don't feel the need to pointedly refer to Down syndrome later down the track and appreciate others who do not feel the need to comment on it. What is appreciated is when people simply talk to the child, interact with him/her and encourage their children to play.
Try to use the right terminology. Remember that it is a child with Down Syndrome, not a Down Syndrome child. A subtle difference with much meaning and shows that you see the baby before the disability.
Develop and maintain a positive and realistic outlook - offer your help and understanding and support the family in their decisions in regard to their child.
As much as possible, treat this new child just as you would any other child - try not to make allowances, especially in social behaviour and good manners, with regard to the disability. Some skills may take longer to learn than for other children - and that's OK.
Supporting your friends
Parents stay afloat in stressful times by grasping tight to those they trust. Don't force your own opinions on them or do anything to destabilise their fragile life supports.
Listen and be there for your friends.
Questioning the competence of those in charge, belittling the doctor's expertise and encouraging them to seek miracle cures is downright destructive. We need to sustain, not sabotage.
Time heals the deepest emotional wounds, but time spent supported by good friends will help them heal all the quicker.