Part of putting yourself “out there” with the news is that you then have to deal with comments from the people you know. Most people mean well, but sometimes things sound “off” to an expectant parent. What kinds of statements make (made) you uncomfortable? Did you respond? Do you wish you had said something different? What were some of the best comments, and how did they help your state of mind? Aside from the comments, are you having any issues dealing with people around you – are you having trouble connecting?
Experienced parents, do you have any useful strategies for our expectant moms?
(Originally posted December 2010.)
Tags: down syndrome, down syndrome dealing with comments, down syndrome pregnancy, downsyndromepregnancy.org
Comments I hated the most once we had our prenatal diagnosis (and how I interpreted them):
1. I am so sorry. (I don’t want or need your pity right now.)
2. No-one could be a better parent for a child like this than you.
(Oh, so I’m somehow better equipped than anyone else on the planet to deal with this… maybe what you’re really saying is that you’re glad it’s not you)
3. You’re so brave – I don’t think I could have made the same decision. (Did anyone ask you what you would have done? Until you’ve been in my situation, don’t presume to know what you would have done, and even if you think you do know, I don’t need to hear it. It has nothing to do with me and my family)
4. Well, maybe she won’t have a very severe case. (Oh boy, you don’t know WHAT you’re talking about. Either you have DS or you don’t – are there differences in cognitive abilities? Sure, but I’ve just had every expectation I had for this pregnancy dashed. Don’t give me more things to hope for, only to have them proved wrong. It’s time for me – and everyone else – to get with the program and love this baby for who she is, not who she hopefully won’t be.)
How I dealt with comments (not saying these are all recommendations):
1. I tried to be forthright with the information about our daughter’s diagnosis and radiate a sense of calmness and positivity, hoping it would rub off on people. That was really hard at the time and took a lot of emotional energy which I couldn’t spare. Still, most people stopped telling me they were sorry when they realized I wasn’t going to indulge their own sense of morbidity.
2. I steamed a lot in private and started avoiding people who had said the “wrong” thing to me. I think that this kind of situation does tend to let you know who’s really on your side and who’s more driven by the shock and pity factor, so maybe I would have drifted away from these friends anyway, irregardless of our prenatal diagnosis of DS. However, see number 3 for a better way to handle this sense of disconnect from those you love.
3. Looking back on it 7 years later, I could have helped those friends along by writing a mass email explaining the diagnosis and telling people what things were helpful to say and do and what weren’t, to give them all the benefit of the doubt. I must admit, part of me wanted to “test” people at the time to see if they were really, truly there for us, but that’s not the best way to handle a friendship.
Unlike many expectant parents I wasn’t so offended by “I’m sorry” because I was surely feeling quite sorry for myself and I really, really needed to know that my thoughts and feelings were being heard. The comments that meant the most to me were the comments unmade: people who just shut up and listened to me no matter how upside down it may have sounded.
That’s what I wish my SIL had thought of before she opened her mouth. She had heard of our unborn baby’s diagnosis from her husband (my husband’s brother) and a few weeks had gone by. When we met up the conversation went like this:
SIL: Hey, I’ve been thinking. You know, I think you really are the perfect person to be this new baby’s mom
Me: Really…why do you think that?
SIL [in her usual chipper, look-on-the-bright-side style]: Well, just think. You’ve had so much surgery yourself so you really know your way around hospitals and doctors. And with all you’ve been through with your mom [who had bi-polar disorder all her life], you understand so much about disabilities. You’re just the perfect person! [ending in bright, happy smile]
Me: Yeah, and it was so much “fun” the first time around I can’t WAIT to do it again.
I couldn’t have been more annoyed. That and the “Oh, they’re such sweet children!” and “God only gives special kids to special parents” comments. These comments and the exchange with my SIL only serve to make the other person feel better or at the least to get me to cheer up so THEY could feel better.
All people have to do is listen. Don’t fix it, just listen.
I was sensitive to comments when my son was born, and shortly afterwards. I’m glad, though, that I realized pretty quickly that most people were trying to say the right thing, and “the right thing” would have been hard for me to know, let alone anyone else. People were pretty interested in my first response to their comment, so I tried to think before I responded with my first reaction.
Often, people are curious. Many people don’t know anyone with Down syndrome very well, and if we’re tolerant of their first conversational foray (not usually very adept), we can get a chance to answer a question or help, perhaps, to change a point of view. If I get annoyed right off the bat, I lose the opportunity. That happened sometimes, and that’s okay, but I’m happier about the times I took a deep breath, and either smiled when I didn’t have much time, explained when I did, and when I was feeling especially brave, or knew the person rather well, told someone afterwards that they probably shouldn’t say what they did to the next parent they meet, and what they could say instead.
For me, “How are you doing?” or “How is he doing?” are things I was happy to hear from friends and family. That way, if I was having a problem, they knew what it was, and if I was having a great day, I didn’t get a sympathetic comment that would have tarnished it. My favorite comment from strangers is usually a sincere compliment on whatever my son is doing, or if he’s, for example, yelling just as we’re about to finish in the checkout line, and I’m getting tense, “Mine do/did the same thing.”
Worst comment in my mind: “I’ll pray the doctor is wrong.”
What I said: “Well, they’ve seen her chromosomes, and she does have three copies of the 21st, not two copies, which means she does in fact have Down syndrome.”
What I should have added: “I’d rather that you didn’t pray for my doctor to be unable to count to three.”
Least favorite comment #2: “You’re so well equipped!” (I teach Special Education.)
What I did: Just sat there.
What I should have said: “Yes, I see how fourth and sixth grade mathematics skills will really benefit my infant!”
Best comment when I was relating the above to a friend, who has an infant (typically developing): “Well, sure, teaching special ed makes you ready to raise an infant with a disability if being a teacher prepares you to be the parent of an infant!” (I love this friend)
I’d like to add an experience that happened a little farther out in time, when our son Larkin was about 18 months old.
DH and I were in line at the grocery, talking to the woman who was checking us out (well, not “checking us out,” LOL). Larkin was sitting in the cart just smiling and babbling away. She and I got to talking about our children and pregnancy in later years. She remarked that her pregnancy in her 30s was harder on her, and that with AMA you had to be so careful about your health and “watch out for that Down Syndrome.” DH and I both smiled big and said almost in unison, “Oh, he *has* Down Syndrome.” The lady replied by cooing at Larkin and saying “You sure can’t tell it, not from looking at him….” and I do believe you could have heard a pin drop for about 2 aisles either way during this exchange. DH and I grinned and just said a few things about how absolutely wonderful Larkin is and how kooky we are about him, and went on our way.
I am happy to report, this incident didn’t bother us in the least.
It made me think about how, at first, I was somewhat uncomfortable talking about Ds, or when people made remarks about it that I felt I needed to “correct.” I didn’t feel upset by his dx, but it could be hard to know what to say to people in a way that didn’t feel awkward. I guess practice makes perfect! There was a time I would have felt awkward and struggled with what to say or do that would seem appropriate. I think about it and smile, today, because it just seemed effortless. It also reminded me what a great DH I have. Anyway, I just wanted to share, with those of you who have BTDT and understand, and for those who are still in the “awkward” phase, because I do believe it gets better.
I entirely agree with Amy. Everything she said, I experienced. Perfectly stated, Amy!
Megan-
I totally cracked up at your special ed comment!!! I am a special ed teacher as well and I have heard that too. People, though well intended, are really clueless.
Could we have one that is about GOOD comments we received? I was thinking about posting and then my mind just went to the positive instead…
Great idea Monica! Next post is the positive comments & support we received. Stay tuned!
Comments I received:
1. You know I had a dream that this “happened” to you.
2. THe minute I found out your were pregnant–I knew your baby was going to have Down Syndrome
3. You know “they” can get jobs, “they” can go to school, “they” can ride bikes–this was all from my mom!
3. I am sorry–this must be tough..
Ways I dealt with it all:
POSITIVITY!! Friends with this experience–and simply just smiled a waved!
The one thing I heard that was amazing:
Congratulations! You are having a baby!!
In the early days, I heard over and over again how “these tests are always wrong.” I am a nurse, and these comments always came from people who were completely ignorant of anything medical. I got so tired of hearing this, and trying to explain to everybody why I was sure the tests were not wrong. I was always nice about it, but I finally said that I didn’t need for all the tests to be wrong, and had accepted we were having a child with Down Syndrome. Then there was the guy who kept inviting me to come to healing services at his church, and all the people who kept saying “Maybe you will get a miracle.” I told those people that God creates people with Down Syndrome too, and my baby will be exactly as she was intended to be. She didn’t need to be “fixed.” I had alot of questions about level of function (WHILE I WAS PREGNANT!!!) and many shortly after I had her. Although these have annoyed me too, I want to keep open communication wiht my friends who don’t mean any harm. They are just curious. And I figure if they feel comfortable asking these questions, I am able to share what I know about Down Syndrome. I would rather have somebody ask a “wrong” question than feel like they can’t ask their questions at all.
Another comment from a mom with an autistic son: “No matter how they turn out, they are still a blessing.” That was a nice thing to hear.
I called a close friend the day after my daughter was born and told him the news that we had a baby girl. We talked for a little bit about how it was going to be nice to have our children playing together growing up together(he had a child of very similar age). After awhile I said, “I should tell you that our daughter was diagnosed with Down Syndrome”. His response was honest and immediate: “so?”. He continued on with the conversation as if the information carried very little meaning and went on to talk about all the other things we would look forward to with our children. I’m not sure if he knows it was the first time that someone didn’t have the hidden, “I’m feeling sorry for you remark”. Still makes me happy to think about.