Saturday, October 30, 2010

New Baby Diagnosed with Down Syndrome--What Do I Say?

Down Syndrome Diagnosis 101, What to Say

Do you know someone who has received a diagnosis of Down syndrome for a new baby?  Are you wondering what to say and do?

Even well-meaning friends and family members tend to stumble over words, and often don't know how to help, or how to process the diagnosis themselves.

It is important to remember that every new parent desires and deserves congratulations on the birth of a new baby.  Parents who have been told that their baby has Down syndrome should be shown the same kindness as every other new parent--along with a little extra awareness and tact. 

A diagnosis of Down syndrome may (or may not) be difficult for parents to process and absorb.  If there are any additional health concerns for the baby, the early days may be especially frightening for the parents and family.

Some parents accept the diagnosis quickly, while others really struggle.  Both are completely normal reactions when unexpected information arrives along with a new baby.  

Look to the parents for cues.  A general rule is to welcome a child with Down syndrome (or any other diagnosis) the same way you would welcome any baby.  Be sensitive, supportive and positive.   

Important things to consider:  

(1) All babies should be celebrated, and all parents should be supported in welcoming new life.  

(2) There is no telling what an individual will accomplish in his or her lifetime--especially if that person is loved and valued and given every opportunity to succeed.   

(3) There is every reason to be hopeful. 

There are several sources for information on what to say and do when your friend's baby has a diagnosis of Down syndrome.  I'm linking to one blog post, which covers the topic particularly well.  Please visit the above link for more detail, but here are the highlights:
First, bring a gift (a receiving blanket, an adorable outfit, a rattle). Second, say “Congratulations!” or “Congratulations on the birth of your baby boy/girl!” or “Oh, (s)he’s beautiful!” Then ask to hold the baby (if you can). Just like you would with any other baby. The birth of a child is something to celebrate, and an extra chromosome doesn’t change that. Your friend’s baby is a gift, just as any baby is.

If you have positive experience with Down syndrome (i.e. a cousin or a friend had it, and they did fine/were adorable/whatever), share it.

{If you feel it is appropriate} Give them a copy of Kathryn Lynard Soper’s book Gifts. Because Gifts tells the stories of 63 different parents, it’s a chance for your friend to meet 63 people who’ve already been there. {There is also now a follow-up to Gifts, which is called Gifts 2, How People with Down Syndrome Enrich the World.}

Offer to care for other children if they have them. Bring in meals. Visit them at the hospital (and bring food that isn’t cafeteria food). Run errands for them. Ask how the baby is doing.

Try to get the terminology correct. In the U.S. it’s “Down syndrome,” not “Down’s syndrome” (because it’s named after the guy who identified it, not someone who had it). And it’s a “baby with Down syndrome,” not a “Down’s baby.” I know this sounds really nit-picky, but it’s important. This way, it’s a baby first, who happens to have Ds.

If there is a Down syndrome support group in your area, get a contact number for your friend. But don’t be surprised or hurt if she doesn’t contact them for a long time (or at all). Everybody has different needs.
Mostly, your friend just needs to know you love her and that you will love the baby too. 
I'd add two things:  First, please don't say, I'm sorry.  If you are concerned about your friend, say just that:  I am concerned about youI care about you and will be here for you.  But saying I'm sorry sounds as though the baby is a reason for sadness.  All babies should be celebrated, even if some of the details were unexpected.

Second, send your friend a link to one of the many family blogs which give examples of life with Down syndrome.  There is a huge support network out here for individuals and families living with Ds.  Your friend is not alone!

Please see the original post for a list of things NOT to say,  and check back here for tips on talking to others about your child's Down syndrome diagnosis.

1 comment:

  1. I stumbled across this blog post and just want to say Thank You. Yesterday morning we received the news that a much anticipated cousin made his way into the world. That evening, we received the phone call that he was diagnosed with Down Syndrome. We are halfway across the country and searching for things to do that will be helpful to the parents who are facing the diagnosis, without being hurtful. After losing our son in 2007 to SIDS we faced a lot of the well intended, yet hurtful comments and actions of others and I do not want to be that person. So, thank you.