The other day, a woman in my circle of acquaintances emailed me this question:
My husband has a friend who just became a father for the second time. We heard through the grapevine the baby has Down syndrome. They've posted some photos on Facebook, where they have received dozens of comments of the usual ilk—congratulations on your bundle of joy, what a beautiful baby, such a cute head of hair, etc. What should we say to them (not necessarily on Facebook)? We want to say something that is not untrue and not unkind.
Immediately, I was transported back to that snowy morning nine years ago when I sat at our kitchen table, laptop open in front of me. Dave and I had come home from the hospital, where baby Max lay in an incubator in the NICU, to grab some clothes. I stared blankly at the email list of friends and family that I'd put together in the weeks before my due date. The plan was that Dave would send out an announcement blast when Max was born, only then things went nightmarishly wrong. I wasn't sure what to tell people.
Finally, I typed. I don't remember the exact words but they went something like this: "We had our baby three days ago. His name is Max and he weighs 7 pounds and 8 ounces. There was some trouble at birth and we don't know what the future holds, but we do know that we have a beautiful boy."
People started sending back emails and cards. Some simply said, "Congratulations on your new baby boy!" and those seemed a bit empty to me given the horror we'd just been through, although I knew that people weren't sure what to say. Some friends said things like "You are so strong, you will be able to handle this," and told me that they were there to talk or to come over and just hang out. Those are the notes I've saved.
There's no one standard response for what to say to a parent who's had a child with special needs; every birth and every parent's reaction to it is different. But I think it's important not to assume that parents consider it a tragedy when they have a child with Down syndrome or other special needs. Condolences are for deaths, not births.
I told the woman who had emailed me that she couldn't go wrong with simple words—saying congratulations, and that she and her husband would be there for the couple. We both thought it would be a good idea to pose her question here so all of you could weigh in.
So please, share your thoughts. When you had your baby, what did you most want to hear from friends?
Photo/paper pony
I think I would say something to the effect that their child was beautiful, they will be awesome parents and that we were there when they needed us, since we know all too well the long, challenging road that lies ahead. I would probably also mention that while this is a difficult life, it is a rewarding life, and one full of purpose. I a, also a glass half full person and would also mention that their experience is what they make it. Close to focus on the positives, pick your battles and see the beauty in everyday.
ReplyDeletethe thing about autism is that when you're child is born, there is no noticeable difference. My twins were on the small side, and in the NICU for a week, but we were still celebrating, as they were healthy enough not to worry too much. I had no idea what i was in for, when the PDD-NOS diagnosis came for my son at 3 years old. I say - celebrate life when you can... know that the little person you now have will be fantastic, no matter what.
ReplyDeleteUnless the parents have acknowledged their child as having downs, I wouldn't say anything besides Congrats. These parents need time to digest and come to terms wit their diverted flight to Holland. There will be plenty of time in the future to discuss other stuff...welcome that baby now with open arms just like it was a 'normal' baby.
ReplyDeleteWhen my son was born with multiple heart defects, I received one "congratulations" gift (that includes cards). While still in the maternity ward, I remember how much it hurt to watch the other moms being showered with balloons, flowers,and happy faces. It hurt to see their babies brought to them when I had make the trek to the NICU then PICU. I wanted someone to come along side me and be both excited about my beautiful son and hopeful for his future. I wanted someone to look at him as a baby, my new son, instead of just looking at his heart. Wow, thanks for sharing this - it's a gift to me to be given the opportunity to voice my feelings.
ReplyDeleteI have two children with special needs - my daughter has CP and my son has Down syndrome. When he was born, we were in shock and grieving (though my husband had a more difficult time than I did - you can read my post from November 1 of this year for more on that).
ReplyDeleteThe three most important things to keep in mind:
1. Don't speak in clichés - lots of people will either ignore the Ds altogether, while most of the rest will say, "God only gives special children to special people." It's a well-meaning sentiment, but it also isn't true, and when you hear it for 100th time it rings hollow.
2. Down syndrome is a challenge, but it isn't a tragedy. Yes, they will grieve the child that never was, so they may be sad, but the baby is still their child that they love, just like any other child, and should be celebrated. Take your cues from the parents.
3. Don't be afraid of the diagnosis, and embrace the child as you would any other baby. The family will be fighting outdated stereotypes and ignorance, and will be waging a battle for inclusion for the rest of the child's life. Be the person that stands up and demonstrates through words and actions that this baby is special and will have a tremendous positive impact on the lives of those around him.
Feel free to send your acquaintance my way. And I just might have to write my own blog post on this subject...:)
I wrote something on this recently. I've heard it all. I really like Andi's #3 above -- most importantly, don't ignore. Don't be silent. The only thing worse than saying the wrong thing is saying NOTHING. And saying he is gorgeous, adorable, beautiful is always good. You can't go wrong praising their baby's beauty and sweetness.
ReplyDeleteKimberly just posted my exact experience from when my daughter was born 13 weeks early and spent those 13 weeks in the NICU. I never got the fanfare of having a new baby, the gifts, the banners to come home to. And I missed that. So every live birth is something to celebrate!! However I will say the NICU nurse who had cared for our daughter had the perfect response when I saw her and told her about our son's PVL diagnoses. She gave me a big hug and said "I'm so sorry!" It was exactly what I needed at the time and was nice to have that sadness acknowledged by someone instead of having to have my happy face on.
ReplyDeleteAs a non parent but a person that works in the field and now have friends that have special needs this is what I have said. Congratulations, on your beautiful baby. May you enjoy all those special moments will have with your very special child. Each moment will be unique and special. Some will be challenging but you will get through each challenge with love and support from family, friends, professional staff and others. Take each moment as it comes. If you need me here I am.
ReplyDeleteI had a similar experience to Jana's after my son was born. My entire pregnancy had been touch-and-go and I believe my OB/GYN probably breathed a huge sigh of relief when Nathan was born healthy - he didn't recognize the DS immediately, only saw it after he'd stitched me up from my c-section.
ReplyDeleteWhen he came to see me in my room later, he gave me an empathetic smile, said "Doggone it!" and hugged me. It may sound terrible, but it was one of the best things anyone said to me. He acknowledged my disappointment but also reassured me that my situation wasn't tragic, either.
Best. OB. Ever.
We are parents to a 10 year old with CHARGE Syndrome. We still remember the first month as if it were yesterday...filled with NICU and trips back and forth and multiple surgeries and therapies since. We remember the most meaningful interactions were not words, but having someone come sit with us, bring a meal, take our other kids on an outing, mow our grass, etc. We have learned that we do not use the words "if there is anything I can do..." Use words like "I am bringing you a meal, do you have any restrictions..." or, I am doing your yardwork, where is the recycle bin..." and "We are going to the zoo, what time can I pick up your kids..."
ReplyDeleteWe have learned to come along beside families and help them through the first difficult days, months and years.
Don't bow out. Parents of special needs children need twice as many friends as they have, maybe more. Anytime the child goes in for surgery or a test, BRING dinner in one of those foil pans. Make it a casserole or something easy to freeze if the family isn't ready to eat. Actions speak so much louder than words. What I wouldn't give for a friend who bakes for me when Joey has surgery.
ReplyDeleteIf the parents had expressed some sort of concern about the future, I'd tell them that I'd be keeping their sweet baby in my prayers and that I AM HERE for whatever they need. If there wasn't an expression of concern about the baby's health, I'd offer them congratulations and best wishes for a long life filled with good health, much love and unending joy for their sweet baby.
ReplyDeleteWhen my son was born, my husband's family just ignored his birth altogether. My son was in the NICU after having brain surgery and no one called or even sent a card. Believe, I have a mental list of every single person who did this (yet thinks it's okay to call our house at all hours of the night for free legal advice). I don't want to be so bitter and angry about it, but I am.
ReplyDeleteIn my opinion, just say SOMETHING - don't pretend like the birth didn't happen.
Personally as a parent of a precious little boy with Downs, I would have preferred the Congratulating and well wishes. Maybe share the "Welcome to Holland" poem. What made me angry and still does even when I hear it for other people is the " I'm so sorry!" My son isn't a tragedy, so barring any scary health issue I see that as a slap in the face. It isn't some horrible fate and I wouldn't trade my son for anything in the world! So tell your friend what you would tell anyone who just had a beautiful baby because she did just have a beautiful baby!
ReplyDeleteThe nicest card I got when my son was born (and was in the NICU with brain damage and an uncertain future) said that, no matter what lay ahead, the luckiest baby in the world had been born - he had a wonderful family and friends who would love him always. It was a nice sentiment (especially since my friend went into detail about how great we were ;-) ) and made me realize that the most important thing, that he was loved, he already had and always would.
ReplyDeleteThe irony (and why people who are not part of the special needs world never know what the right thing to say is) is demonstrated by the fact that not only are these answers diverse; they are sometimes contradictory. Nothing wrong with that (each person can only share his or her feelings and experiences) but just pointing that out.
ReplyDeleteI have a child with downs... And I would say its going to be hard at times but you can get through this.. I would also say no matter what life throws at them just be the who picks them up and teach them that no matter what you will always be there for them.. My son max is 4 and when I found out he has downs I was scared more scared of what he was going to go through in life but I came to relize that no matter what I have to be the strong one I cant let him see me upset if some one picks on him or if he struggles in life I just gotta keep pushing him...
ReplyDeleteWe got the diagnosis at birth that my son had Down Syndrome. Of course we were shocked but then we went into hyper-drive to make sure he was okay, which he was. We had a lot to learn really quick and like all parents of a new baby we were overwhelmed. Regardless of his diagnosis my husband and I were so grateful he was healthy and here, we loved him before he was born and even more once we saw his cute little face.
ReplyDeleteSo with that said, it was really hard when the condolences started pouring in! In all fairness I don't know how I would've reacted if one of my friends had had a special needs baby but it was rough. We did get some congratulations but it's the looks of pity and "I'm so sorry" that still hurts me to this day, it was a day to celebrate not mourn. I also got so tired of hearing that we were the perfect parents for a special needs baby. God only gives them to special people, you were chosen. No, it was genetics and my age that gave us our precious boy:)
So with that said what would I have liked to have heard? Foremost, congratulations on the birth of your son. He was conceived, carried, and delivered like any other baby:) I think just be honest and open. Congratulate them and recognize that it will be a different journey but they're a family and your looking forward to watching them grow as one. I think our poor friends took it harder than we did and a lot of them now can talk freely with us about our son and that's what I value. They all love him so much and are glad that he is who he is and like us wouldn't change a thing!
While still pregnant we found out our Jillian was to be born with Down Syndrome. I remember sitting in church one evening during worship, Jillian kicking away as she usually did at that time on a Wednesday, and praying along with the music. "I want to see Your face" emerged silently from my heart. At that moment, I opened my eyes to see a group of people signing their worship, "That is My face" is what I felt. I layed my hand upon my belly, once again, "This is my face" was filling my heart and mind.
ReplyDeleteMy God reminded me, ALL children are born perfect in His eyes. Who am I to judge if my child's life will be complete. She has been put here to do a job that only she can do.
Revel in that baby! Be excited with the parents! Notice his eyes and hair or lack there of! If it comes up, tell them how blessed they are. God has trusted them with a life that is dear to Him. He knows, they are the perfect parents for this perfect baby, no matter how imperfect they feel.
I just had my first child at 28 years old and received the diagnosis of Down Syndrome about 3 hours after his birth.
ReplyDeleteCongratulations are great, but help is better. So many people asked what they could do and told us to call if we needed anything. Only one couple just went ahead and DID... they brought us lunch at the hospital (but didn't stick around - just dropped it off), brought us dinner when we got home, etc. I will never forget that. They helped us so much in those discreet, unimposing gestures.
I remember cringing everytime someone commented on his appearance. I either was mad that they were "ignoring" his obvious differences, or upset that they would ask about his small ears, etc. There was no winning at that point and time.
Ask mom about the birth! I loved telling my birth story, because it helped me to enjoy and celebrate the experience and not the awful things that happened after he was born. Likewise, I enjoyed educating people about his diagnosis and prognosis. I was googling like a madwoman on my smartphone from the hospital, and was able to reassure people that he was going to be just fine.
Don't ask how they are feeling or offer sympathy/empathy. Everytime someone said "this must be so hard" I'd break down in tears. However, after that first week or two, keep an eye out for signs of postpartum depression. It's a beast of a burden.
Reassure them of their awesome potential as parents, not of a "special" child, but just in general. They will need all the encouragement and support they can get, but without another painful reminder.
Express interest in wanting to meet the baby! My son is now three months old, and I can count on one hand the number of friends that have actually met him. So many people are scared to do or say the wrong thing, but avoidance makes it even worse. Our little guy is hilarious, and it hurts that so many people seem too scared to enjoy him. I'd rather hear cliches and unintentionally hurtful comments than be ignored.
I would say, "In this wild journey of parenthood, keep your heart open to whatever fork in road comes your way. It might not be the road you expected,but it's your road, and your child is beautiful in the eyes of the people who love you." I would also offer any support they need, whether its help around the house, meals, an ear or a shoulder.
ReplyDeleteThere isn't much I can add that hasn't been said...So much great advice here from the Domestic Goddess, Melissa M, Andi @ Bringing the Sunshine etc.
ReplyDeleteBut I really appreciate what you said - "it's important not to assume that parents consider it a tragedy when they have a child with Down syndrome or other special needs; condolences are for deaths, not births" - so very true.
When my grandson arrived, we found out he had DS and would need surgery to correct a bowel obstruction and later would need heart surgery for tetralogy of fallot. What didn't work was cliche comments or people not asking questions. What did help was offers to lift our family in prayer by people of all faiths, and the opportunity to celebrate his arrival, and the patience to listen without telling us "how" to feel. Genuine joy for his arrival into our family was the greatest gift and being willing to share the journey of parenthood, while focusing on path of love and life, rather than the on the obstacles.
ReplyDeleteWhen my son was born, no one wanted to visit us in the NICU--it was as if they were all waiting for everything to be ok before they felt comfortable congratulating, visiting, or cooking meals for us (and we were dying for some good food--the hospital cafeteria gets old fast). My advice is to congratulate them and then ask what type of meal they'd like and which storybooks they'd like you to bring the baby. We spent so many hours reading and singing to our son in the NICU--it was comforting to him and to us. Avoid saying "I'm sorry" or offering condolences. Just show your support!
ReplyDeleteSpecial needs children hold a special place in my heart. My dream is to adopt through Reece's Rainbow. In communication with a parent of a special needs child, I wouldn't disregard the fact that the child requires special attention but a new birth is such a joyous occasion I couldn't resist being exuberant. I would offer help and comfort and anything else that the parent may need.
ReplyDelete"Congratulations! He/She is beautiful. You can do this." Heartfelt words that one would offer to any new parent are appropriate and welcomed. I know it can be a challenge, because as a society we frequently don't handle "different" as eloquently as we ought. All new parents need encouragement. (Hello....sleep deprivation, anyone?) Really, it is a huge victory that someone would do homework and seek appropriate words, when so many speak words without thinking - compounded by body language and facial expressions that only add to the hurt.
ReplyDeleteI didn't get to read everyone's comments yet, but Andi's really resonated with me. We had indications that Alyson MAY have DS in utero so at birth it was still a shock to confirm. We had also withheld our information from friends and family until we confirmed it. So at birth, we grieved the child that we didn't have, we grieved for all the obstacles she will face, and once that's over we celebrated her life. I received a number of well-intended comments "you were given a special child because you are strong enough to handle it". I don't blame anyone for saying these things, but at the time, it's not really what I wanted to hear. I say go ahead and just address the pink elephant in the room. Let them know it's ok to cry over not having the child they imagined, but also to remind them that there will be many new adventures they didn't imagine to come as well. It won't be an easy road, but that they will have the support to help them get through it. Our NICU doctor had a nephew with DS and he told me that the child brought a lot of joy to the family. This is very true. Life as they knew it will not be the same but that does not mean it will be worse, just a bit more challenging. One thing to keep in mind, even a typically developed "normal" child doesn't guarantee that things will be challenge-free in the future either. It's more like, we know for certain we have things to overcome. I wish your friend the best for their new journey ahead. I wouldn't have done anything differently myself. Most importantly, please tell them to enjoy their new bundle of joy.
ReplyDeleteCongratulations on your new addition. when can I come hold him/her and breathe in that miraculous new baby smell?
ReplyDeleteAll babies are beautiful in their parents eyes, but I must say, I've never seen a baby with Down syndrome that wasn't heartstoppingly precious and beautiful.
When my wife and I found out about our daughter's complications, she was still many months from being born. We had planned on keeping a family blog anyway, and we have always been as honest and straightforward as possible.
ReplyDeleteThe best thing you can do is make it plain that your child is loved, no matter what. Love every moment you have, and keep your loved ones in the loop as much as they desire.
My two cents.
I think your comment was pretty spot on! Definitely want to congratulate them on the birth of their baby and not send condolences! Maybe they could also assure the parents that the baby will be just as valued and loved as their other child(ren). They could also say something along the lines of, "I don't know much about Down syndrome (or whatever dx is) but I'm willing to learn whenever you can educate me/inform me." They can also offer the usual "If you need anything/need a babysitter."
ReplyDeleteWhile my wife was pregnant with Noah we both created this imaginary child in our head. We knew what he was going to look like, how he would act, what sort of clothes he would wear, what sports he was going to play, and we knew for certain that when it come down to Mac or PC...he would be a Mac!
ReplyDeleteWhen Noah was born we quickly mourned the loss of our imaginary kid. The kid we made up. The kid that never existed. (I'm glad we lost that kid by the way...because the one we got is a billion times better!)
I won't bore you with all the details (feel free to read Noah's birth story if you are interested in hearing more, plus seeing some pictures!) but to make a long story short: Our OBGYN quickly bolted from the hospital (without talking to me or my wife), they didn't let my wife hold Noah, and they quickly passed by the viewing window. They knew we didn't know, and since my wife is a pediatrician they didn't want her to self-diagnose her own son with Down syndrome. So we waited and waited and waited (without being told anything more then 'sorry it's taking so long, we're just getting Noah all cleaned up for you guys, he is doing awesome!' I just kept thinking, "Boy, that's a really long bath he is taking."
Finally our pediatrician (and our personal friend) came in and said, "First of all I want you to know your son is precious!" (I later learned that's Doctor talk for "I'm about to tell you something that's going to feel like you just got punched in the heart! We then were told he was born with Down syndrome.....it was a long night.
The next morning our OBGYN came in and for the rest of my life I'll never forget the first words out of her mouth:, "I"m so sorry." The 2nd sentence was, "I'm going to prescribe you some antidepressants." (She said this without looking my wife or I in the face.) She went on to tell us how she left the hospital the night before and went home and looked at everything to she if there was "something she missed" or if she couldn't have "caught it" before hand. WOW! REALLY?!? I thought.
My wife and I just kept thinking, "We just had a baby! What are you sorry for??!?!" We fall in the love with this kid the 2nd we saw him.
I'm sort of a tech geek, and am very active on social media and blogs (not-so-shameless-plug: http://facebook.com/noahsdadcom is our son's Facebook page by the way!) So my wife and I decided that it would take forever to call every one of our friends. We also knew that none of our friends had children with special
(Part 2)
ReplyDeleteneeds (that's changed now..we have TONS of friends!) and so we didn't want them to feel weird. I thought real hard about what I would say if I were a friend of someone who had a baby born with Down syndrome, and how awkward it would be. Should I bring flowers? Cards? Balloons? Is it a party like every other birth...or should I walk in all sad and say "I'm so sorry." I wouldn't want to offend anyone. So I knew that most of our friends would be in the same spot I could have just has easily been in.
So I wrote a post on my blog called "Spoiler Alert: Our Son was Born With Down Syndrome" and give them a few of idea of how to respond to us. Feel free to take a look at that post, and you can see our response to our friends, and how we wanted them to resound to us.
Sorry for the ramble, but I just wanted to share some of our story.
For people wanting to know what to say to a family in the place where we were last here let me give you a few suggestions (other than what I listed on that link above.:
1. Say CONGRATULATIONS! Seriously, they just had a baby!!
2. Talk about it! It's ok to talk about the "special need" or any health concerns a parent may have. Seriously! Don't just ignore it.
3. Hold the baby! Play with the baby (if you can!)
4. Tell the parent that you LOVE THEIR BABY
(part 3!...wow, sorry!)
ReplyDelete5. Don't tell a parent "aww..God only picks out 'special parents, to have special kids.' (He doesn't. You probably already know how babies are made. It doesn't take a 'special person' to make a baby, trust me. It just takes a few minutes. Ok, ok..sorry!) And there are plenty of people who have children with special needs who shouldn't have any kids at all. If you don't' believe that just hang out in your local ER one Friday night..you'll know what I mean. :)
6. Don't say they are all angels. (they aren't). I've met some mean kids before. Both with special needs, and without. Kids with special needs can bite just as hard as any other kid...trust me! :) In other words, don't put them all into one group. They are all unique, just like all children. They will misbehave, and need loving correction...just like all children. Having a 'special need' doesn't all of a sudden make you a super nice person....and I'll bet many of these parents on here can back me up on that. :)
7. I could go on and on, but I'll end with this....just be there friend. Don't' worry about how awaked things may or may not be. You can say things like "hey, I don't know what to say" or " I don't much about autism, could you help me learn?" and it's also very helpful to say, "I'm probably going to say and do some pretty dumb things because I don't know anyone with a child born with (fill in the blank.) So you have my permission to correct me and tell me when I'm doing one of those things. If I say something that is out of line, or offensive...or do something hurtful, please let me know because that isn't my intent."
8. And one more thing..(I'm a Steve Jobs Fan!) - LOVE LOVE LOVE LOVE LOVE on that baby. Hold him. Squeeze him (within reason!). Shower the baby and their parents with gifts (parents, you can think me later!:) Treat them like you would treat any other parent having a baby. Seriously. Remember, you can make things as awaked, or as comfortable as you choose to. The ball is in your court!
If you are interested in learning more about Down syndrome or meet a new parent, my wife is putting together an incredible New Parent Guide To Down Syndrome. It's worth taking a read to learn more about Down syndrome, or how to pass along and share with others.
Ok I'm very sorry for the length of the comment. Hope what I've shared is helpful. And if you made it this far you deserve something extra awesome this Christmas! :)
There are so many wonderful comments!
ReplyDeleteYes you should say something and it should be sincere.
Why can't you say the child is beautiful? I'm sure he/she is. In my opinion whatever you do don't say things like ..."G-d chose you because your an amazing person", or "Everything happens for a reason," which is my least favorite.
I had a fried whom when I saw after my child's birth for the first time (my son was at home,) ranted on and on about her pregnancy and her life and asked me how I was, but never once asked about my son. I didn't bring him up because I wanted to see if she would.
She acted as if he didn't exist and that hurt the most. Yes he may face some challenges, yes it may not be what I expected but as one person said above a birth is to be celebrated. Don't ignore your friend or her child. This was probably one of the most hurtful things anyone has done to me, and I can say I do not want to continue my friendship with her.
When my son Warren was born I was only 19 and single. The hospital staff were so worried that it would be too much to handle that they weren't sure what to say. The most helpful for me would have been for peole to say congratulations, he's so beautiful, etc. The best thing I did hear, was he's still just a baby. He needs what babies need. Maybe he'll have to see a few specialists, but at the bottom of everything, he's a newborn. My mother in law went out and got me a bunch of books about ds from the late 80s, and while I know she was trying to help, it made me feel more alone and hopeless. So I guess, saying congrats, being happy, and if you are going to try and supply info, make sure it's current.
ReplyDeleteFor me there was nothing anyone could say! I would rather people found out on the grape vine as I didn't like telling people a bout his diagnosis, but once they knew it was easy for me to talk about it, so ask me how I'm going and how I'm feeling. The older he gets the easier it is. He is such a little blessing and the perfect 5th addition to our family. I guess for me, don't be afraid to talk about it with me! It helps to talk, to vent and create an awereness, that down syndrome isn't scary and they have just as much right to a good life as anyone else. Xx
ReplyDeleteMy husband and I were blessed with twin girls about 3 1/2 years ago, and little did we know, but one would be born with down syndrome. One of my best friends had been struggling to get pregnant for over a year, and as we tearfully told her that one of our babies had down syndrome, she told us simply, "So what." That is the one thing I will never forget. Kind of took us by surprise, but to her who had wanted a child so badly, that would have been the last thing she cared about. Both of our daughters are amazing, and beautiful, simply perfect. That really helped to put things into perspective and realize the gift we had been given.
ReplyDeleteI'm not a mother of a special needs child, but I have CP, and I think you should just say congratulations. It really depends on how close you are to the person, what would be appropriate to say.
ReplyDeleteHappy Hannukah Ellen
My son was born with Down syndrome, something we were not aware of until five days after his birth. I look back now and am sad that the joy was somewhat taken out of his arrival.
ReplyDeleteI would just stick with congratulating them on the wonderful addition to their family, so exciting for the older child to have a sibling, etc.
IMO, the more important words and actions come later on, when and if they address their son's diagnosis with you.
different situation, as knew there was a 50% chance our son would be born with marfan syndrome, which i have, but i wrote a post about what i hoped people *wouldn't* say, called "please don't say i'm sorry": http://marfmom.com/archives/2887
ReplyDeletei feel like saying you're sorry for the diagnosis places an automatic lesser value on that person, or at least expectations.
What not to say:
ReplyDelete"I am sorry."
"How sad."
" I don't know what to say."
What to say:
"Wow! How beautiful!"
"Congratulations!"
"You are so lucky to have this wonderful child and he/she is so lucky to have you!"
"What a blessing you have been given."
"What a PERFECT baby. Just as God planned."
I would not change anything about my son if given the chance.
Let’s look at Psalms 139:13-16:
"For You formed my inward parts;
You wove me in my mother's womb.
I will give thanks to You,
for I am fearfully and wonderfully made;
Wonderful are Your works,
And my soul knows it very well.
My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the depths of the earth;
Your eyes have seen my unformed substance;
And in Your book were all written
The days that were ordained for me,
When as yet there was not one of them."
You see, while it is a shock to find out that your baby has Down Syndrome, there is still this new life that should be celebrated.
Down Syndrome is far from the end of the world. Quite the contrary. If everyone had an extra chromisome this world might be a kinder place. I wouldn't change a thing about my son if I could.
We received the Ds diagnosis at 15 weeks of pregnancy, so my experience was a little different -- there was no baby to ooh and aah over, just this shocking piece of news. The most comforting reactions were the two I remember word for word today (and Cooper is now 10). The first came when I called a girlfriend and told her, and her husband could tell by listening to her side of the conversation that something was wrong. She conveyed the news to him and he said, "A baby is coming. It is a beautiful thing. Congratulations." He didn't skip a beat, he didn't belabor the news, and he brought the focus back to the important news -- a baby is coming!
ReplyDeleteThe second came from another girlfriend, when she said, "We never know what’s in store for our children. With this diagnosis, you now know one of the huge challenges this baby will face in his life. It is a certainty. But the diagnosis is the only thing that is certain. What this means for his life depends on so much more. This is just a peek, a peek at Cooper’s crystal ball." Her point of view was hopeful, and helped me get past that momentary feeling of 'victim' that came with the news. Her idea that this was just a glimpse into his future helped move me to a place of power -- I as his mother, we as his family, we had so much to offer this baby.
we received our diagnosis at 19 weeks...our amazing Gideon is 4 now. I think I would have liked to hear - "that I know it's not what you expected - but it's going to be okay..."
ReplyDeleteBeautiful baby, has the perfect parents, hurry up and have another one!
ReplyDeleteOh gosh. 45 comments already and I went and dug up a blog post that I written specifically about this, called "feedback: what to say". Here it is, anyway - http://www.withalittlemoxie.com/2010/08/feedback-what-to-say.html#.TvM4xtVYWSo
ReplyDeleteIt's what I wrote in response to all the silence I was feeling when I'd "tell" people Moxie has Down syndrome.
With having a child with Down Syndrome and not knowing until she was born the response from family and friends was "Oh I am so sorry"....that really upset me, I asked them why are you sorry, I am blessed to be the mother of this wondeful baby, granted both my spouse and I did go through the greiving process but that lasted all of a a day or so then it occurred to me that having a child with Down Syndrome was not a "death sentence" and it we would be ok. Today my angel baby is 10 years old and the joy of mine and her daddy's life. My words to a new parent with a child with Down Syndrome would be , congratulations as you would say to any parent and also I would say that maybe right now you can't comprehend it but what a wonderful gift they have been given from heaven .
ReplyDeletewell put! yes, condolences are not for births! when braden arrived with Down syndrome, it was not a tragedy at all, and all i wanted to hear was "congratulations on your new baby boy!" those comments were few and far between. i wish folks would just stop assuming... and just ask a tactful question now and then. then they would find that we are blessed, not burdened. thx ellen.
ReplyDeleteMy oldest has Autism and recently a friend from elementary school had a baby with some brain abnormalities (they have not shared her diagnosis)
ReplyDeleteThey posted something like "Charolette has arrived. However, an MRI on her brain at day 2 of life showed some abnormalities. Doctors do not know how this will effect her in the future but for now we will just enjoy our princess."
I replied "congratulations. My oldest is 8 and has Autism. This was never the journey I would have chosen but it was definetely the journey I was meant to be on"
This response is overwhelming! My son Billy is 55 years old; we didn't have a diagnosis of Down syndrome until he was 18 months old. Even so, people noticed that he had special features and would sometimes look away or sometimes stare impolitely. Rarely did they ask questions or make comments.
ReplyDeleteNow that Billy is a grown man and a joy to our family and friends, I am frequently asked to speak with new parents of babies with Down syndrome. I can say to them with honesty that their lives will be challenging but rewarding. My best example is Billy.
I have a friend who is a pediatrician who used to say "I'm so sorry" when she told her patients that their baby had Down syndrome. Then she had a baby of her own with Down syndrome; she no longer says "I'm sorry."
Follow us at Grownmannow.com and you will understand.
I think there is no "right" thing to say, or maybe it depends on the state of mind of the parents. Looking back on when my son was born with DS, I think all my friends and family did say the right things, according to the other comments on this blog. Everybody was happy and saying congratulations, and therefore I felt like my grief and my hurting were being completely ignored. And then, I felt like I was wrong to be feeling that way as apparently everybody else was thrilled.
ReplyDeleteI think acknowledging that things are not as expected is helpful. Above, someone suggested, "I know this is not what you expected, but everything will be okay." I think I would have liked to hear that, along with the congratulations.
What I really wanted in those early days was for somebody to be able to take the whole nightmare away and make it not true that he had DS. Since nobody could do that, it didn't matter to me much what else they might say. What I did like was when people came around (instead of avoiding us) and wanted to hold and coo over the baby, and say how adorable and precious he was.
That still holds true today. My son is 4 and is a funny, adorable, lively little boy. Family and friends who obviously appreciate, love, and dote on him get a lot of extra points in my book.
I wanted my friends to ask me questions. I wanted to talk about it. It was like the elephant in the room. When I brought it up I felt like a downer, the conversation usually fell flat. I don't
ReplyDeletemind people asking what she has, but I hate when their response is I'm sorry.
This is a no brainer. All babys are beautiful and blessings from god. Just congratulate the parents and tell them what a beautiful angel they have. We tend to focus sometimes to much on the disabilities and miss out on the joys.
ReplyDeleteSo many great comments! One thing I think is that the "right" comment will probably depend on the parents, and probably the diagnosis. My twins were born prematurely, and one had a severe brain bleed but no other diagnosis yet (eventually became pretty severe cp). For me, "congratulations" and "I'm sorry" both were entirely appropriate. Too much joy wasn't the right thing, and neither was the "you were given this because you are strong enough for it" types of comments. Ugh. (Now, someone said "I'm sorry" to me just last month, and my daughters are now 4-1/2 years old. That felt very strange.) Don't worry too much about saying the wrong thing. As others have stated, the worst is saying nothing. I appreciated the intent of everyone who said something, even if it wasn't exactly the "right" thing.
ReplyDeleteI didn't want to hear "I'm sorry". I wanted to hear congrats. Your baby is beautiful. I wanted the flowers and cards
ReplyDeleteWe had a fairly good idea she would have Down syndrome, so we'd gotten some of the grief and shock out of the way before she was born.
If people really want to acknowledge the special need, I always preferred something along the lines of "I don't know exactly what Ds, autism, etc means, but I want to learn right along with you." Support and love.
I'm still not a fan of the Holland and Special mother type poems...
As a mom of a three and a half year old with Down Syndrome, I think the most appropriate thing to say at this point is "Congrats! He is gorgeous!" and to treat him much like they would any other baby. They need to follow the parents' lead at this point--if the parents are just posting pictures on facebook and announcing the birth, then it should be left at that. When the parents want to be more open about the diagnosis, they will, and then it's appropriate to say something specific to that.
ReplyDeleteThe only exception is if the baby has medical issues and is in the hospital. If that's the case, I think it's appropriate to reach out to the parents to ask if they need anything--a meal, some errands run, someone to take the dog, etc.
When Johanna was born, we really grappled with the diagnosis, and it really helped us that our friends welcomed her with open arms and treated her no differently than any other child. Personally, I think that's the best thing anyone can do.
This sort of goes counter to what a lot of people said here, but I think the thing my husband and I missed most after one of our twin's diagnosis of brain damage was people acknowledging how hurt we were. Everybody just wanted to skip right ahead to the "it'll all be OK; you guys are great parents; no matter what happens, he'll be loved" part. And that's great. Certainly better than some of the folks on here whose families pretended the baby didn't exist (#@*??). But I've learned the value of just sitting with someone in their pain; acknowledging that their situation sucks for a moment before speeding ahead to the pep talk.
ReplyDeleteI don’t think there is necessarily a “right” thing to say. What one parent would like to hear may be opposite to what another would like. For me, it would be similar to Jill and Shasta’s response.
ReplyDeleteMy daughter has a very rare diagnosis, and most people aren’t familiar with it and the things that come along with it. For that reason, I love for people to ask questions so they can better understand her and where we are coming from as her parents. Most of the time it’s like the elephant in the room, however. No one acknowledges it or says anything more than the typical, “It will all work out” or something along those lines. If I do bring it up, often times I’m met with silence. I think most people just don’t know what to say or think I’m being a negative. Noah’s Dad had great suggestions of things someone could say.
Also, I think it’s really important for people to acknowledge the pain the parents are going through. The last thing we want is pity, but it would be nice if people would understand that we are grieving the loss of everything we had imagined and planned for our daughter and us as a family. That loss hurts…a lot! As Shasta mentioned, just sitting with the parents and recognizing that the situation just sucks can mean the world.
I have an adopted child with special needs. Special needs we did not know about until after he was home for almost 2 years, he has CP. I would say to that parent that it will be a challenging road at times,but a road that will fulfill you. Your child will teach you things you things you never would have imagined. Actually, I would refer them to that poem, "Welcome to Holland" and well, that says it all. Best of luck to them.
ReplyDeletei think every parent wants to hear something good and hearth warming to their baby,... say something positive first, then have some casual talk with them,after some conversation, go back to your original intention,.. you should tell it in a nice manner, you can also do some research in order to append in some of their questions,..for example: what might be the cause of having that kind of baby,.. answers might be because of improper carriage or maybe because of some relationship issues . Then help them decide what necessary things must be done to the baby...
ReplyDeleteIf I had a child with special needs I would most want to hear you have been blessed with a child who will teach you more about yourself and life than you ever thought posible .
ReplyDeleteI, as an autistic, would say "Don't let cure advertisements make you think that your child is a pestilence. That kid is here to bless you with its different ability."
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