Yesterday, someone stumbled onto my blog by searching “what to say to parents of newborn down syndrome.” I thought I’d answer the question, especially apropos since October is National Down Syndrome Awareness Month (at least in the U.S.).
It’s very simple. Here’s what you do and say:
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.
Having said that, realize your friend might be grieving. All parents have to grieve the loss of the perfect child they thought they were having, but most people get to do it in tiny increments spread over several decades. With Down syndrome, you know right away that your child isn’t the athletic brain scientist with a model’s body that you thought you were having. But if you accept the baby with joy, it will be easier for your friend to–even if she thinks you’re nuts at first.
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. When our daughter was born, our family practitioner told us he’d grown up in an isolated rural area, and his only playmate had Down syndrome. The boy was born to an older couple who had long given up hope of having children, and he was a joy to them all his life. To my doctor, growing up as his best friend, he was just John (or whatever his name was). This was very comforting to hear.
If you don’t have personal experience, check out this entry, and then you can say, “I just ran across a writer’s blog, and she has a daughter with Down syndrome who is just adorable!” (She really is adorable–go check her out!)
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. And because it’s in a book, which she can take in little or big pieces, as she wants, it’s even less threatening than having to meet them face to face.
Your friend may be dealing with life-threatening problems (babies with Down syndrome often have heart defects, for instance). Here, you might be able to help. 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. She needs to know you aren’t going to run away and hide. And she might need to borrow your optimism (if you don’t have any, fake it).
Finally, there are a number of things NOT to say:
“You’ll be fine because you’re so strong.” First, you don’t know that. Second, your friend doesn’t feel strong right now, and this heaps impossible expectations on them. Third, we (parents of children with DS) are no stronger than anyone else. Strength develops in crisis; it wasn’t there before. Trust me: if you are blessed with a baby who has DS, you’ll develop the strength too.
“God chose you to be the parents of this special baby.” First, you don’t know that. Second, as a parent hearing that from a friend, we tend to hear a subtext tacked on: “and thank the Lord he didn’t choose me!” which makes it a backhanded compliment at best. Third…oh never mind why it’s offensive, it just is.
“They’re all so sweet!” (or loving or good or happy or whatever). If you find yourself saying “they all…,” stop! First, it feeds into the they-versus-us mentality. Second, the DS population is like every other population, and “they” aren’t “all” anything. Some people with DS are sweet; some are surly. Some are happy; some are depressed. Etc. (As I said before, however, if you have personal experience, it’s absolutely acceptable to say, “I knew so-and-so, and she was really sweet.”)
“Don’t worry. The baby will be fine.” Again, you don’t know that. Babies with DS face enormous physical challenges, and some of them don’t make it. And Down syndrome is a pretty wide spectrum: while the vast majority of people with DS are mildly mentally disabled, some are profoundly disabled, and they won’t be “fine” by the standards a brand-new parent holds. False hope is false hope, no matter how lovingly it’s given.
“Oh, dear. She’ll never be able to _________” (fill in the blank: walk, read, drive a car, live independently, get married, etc.). First, you don’t know that (hmm…this is beginning to sound repetitive). Second, it’s probably not true. Until very recently, most of the research on Down syndrome was done on a population institutionalized at birth. So any statistics older than 10 years or so are probably grossly pessimistic. Third, even if it were true, it’s too much to take in all at once. Unless you can tell the future and never get it wrong (joke!), don’t make any prophecies about the future, positive or negative.
Last, do not (do NOT!) use the word “mongol” or “mongoloid” or “retard.” I know it’s hard to keep track of the current phraseology (I have trouble with it too–is it mentally handicapped or mentally disabled?). But these words are as old (and as offensive) as the “N” word.
I suspect I’ll think of many more things well-meaning people have said that hurt, but this is a good start.
In general, be supportive. Express love. Accept the baby. You’ll do fine. The very fact that you bothered to look this up tells me that.
ETA: If you see Google Ads at the top of this post, please know I did not request them and do not want them. Please do not encourage the monster by clicking on the ads, no matter how badly you may suffer from Irritable Bowel Syndrome. And thanks for popping in! The good news, they tell me, is that if you return regularly, the ads magically disappear.