Yesterday an English friend and I threw a baby shower for a mutual friend. The way it turned out though was that no others from our circle of friends were able to make it. Only the guest of honor's friends, who we'd never met before, were able to come. So, everyone arrives whilst my little Ian is sleeping in his car seat in a distant corner of the room. While we were all making introductions and making small talk Ian would periodically stir. He would lift an arm or a leg and let out those cute noises he makes. The guests would make comments like, "oh, how sweet", or "I love it when babies make those darling noises". All the while I respond with slightly uncomfortable smiles and nods, knowing that when Ian finally does wake up and joins us, the ladies are going to have a situation they weren't expecting; My son has Down syndrome.
Ian finally wakes and I bring him to the circle of "friends". As I set him on my lap I say to the ladies "This is Ian", but I do not look in their eyes to see the reaction they have to his not being a "typical" child. I love my son beyond words, but I am SO ashamed to say that I am also very uncomfortable making this introduction. The ladies say "hi Ian". Absent of course were the freely expressed "Oh how cute" when a new baby is brought into a room. I think I may have heard a strained "how sweet" above the din of thoughts rushing through my head. Conversation starts up again about other subjects.
I've heard about our kids with Ds doing inappropriate things in social situations, but I thought that wasn't something I was going to need to deal with until a year or so down the road. Surprise! Yesterday was the day it began. Ian has this noise that he makes when he is uncomfortable in some way. It is kind of a grunt mixed with a squeal. It is not the most pleasant sound. So, yesterday, for whatever reason, he really went for it. It seemed like his grunt/squeal was three times as loud as normal, or did it just seem that way because I was so uncomfortable with the situation? He did his "thing" and the room immediately fell silent. I made some off-handed comment like "oh my! What's up, buddy?" while dying a thousand deaths inside.
During the baby shower there were no desperate pleas to hold my baby like there would have been had Ian been a "typical" baby and there was no peppering me with questions about what Ian is up to. That's hard to take because in our eyes he is SO sweet and SO fun and SO precious, that it's difficult when people have a hard time seeing past his challenges to "see" him.
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Hugs to you, Annie. I remember too well situations as you described. I spent most of my effort in public trying to decide if people noticed my daughter had DS.
I just wanted to say that if I were there, I would have made a huge fuss over your beautiful little guy! There is nothing else to do except go through this crap in the beginning. I promise it will get better. He's going to surprise everyone, including you!
Blessings.
all that to say, it doens't make it easier.
Though I've never seen Ian (or you for that matter) in person, I have seen the pictures that Tom has posted, and I think he's absolutely adorable! I hope that doesn't seemed canned or patronizing because I wouldn't say it if I didn't believe it.
Anyway, don't know how much that will mean to you one way or the other, but there it is, one mom to another.
And by the way, I think it's great how well he's communicating to you when he's uncomfortable in a situation and that you recognize it. I know a lot of moms who wouldn't. Maybe later it will be with a more pleasant sound, but how grand that he knows he can tell you something about what's going on.
Hope that's not too random.
I have a 4 year old, Anna, who also has DS. I remember when she was tiny always wondering if people "noticed." We found that as time went on, Anna became our a---h---meter, a great filtering system by which we decided who we wanted to spend time with. Although it's tough now when Ian is so young, you will eventually find that you don't think about it so much and are actually surprised if someone mentions DS to you out of the blue. These are early days yet. Best, Mary
Some people are just plain rude. I have known people who have lost long term friends once they had a child with DS because the "friends" stayed away.
In my experience, the problem for most people is they don't know what to say or how to react, so they do the only thing left, which is to ignore and hope no one says anything.
However, many people are quite relieved if they are given guidance on how to react appropriately. Many will follow your lead.
If you feel uncomfortable or embarrassed, so will they. The last thing they want to do is say or do the wrong thing, so it's better they change the subject. However, if you are bold and confident with Ian, then others are more likely to be so.
Sometimes you can force the issue when you introduce him. Although I'm usually loathe to "use" the DS as any kind of excuse, it can help open people up.
"Hi, this is Ian. He has DS, but if you look really carefully you'll see he's actually just a baby who needs feeding, changing and attention :)"
If you can say it with warmth, like you're allowing the other guests into a special world, then they are most likely to respond very positively. You can even draw them in by saying "When I first found out Ian had DS I had no idea what that really meant, so I've had to do a lot of reading up on it. If there's anything you'd like to know, please ask."
If you're going to such a gathering with someone you know, then you can even get them to be a plant in the audience to ask a question, like, "I know Ian had to have a heart operation a few months ago - was that related to his DS?"
Rather than fearing confrontation, which sends out body language signals the others will react to, create a place that allows people to feel privilaged and enlightened.
And if anyone does have a negative reaction, you can bet they wouldn't dare show it in front of anyone else.
I hope that helps a bit
Well, poop-nuggets. Sounds like Ian had a good time. IMO, People, and particularly that sized group of people, already in an awkward situation, behave poorly. They were actually more locked-up than you were, they had nothing "over" you. Don't let the moment pass without realizing the power that you held, the cards to deal. You could have made them all feel smaller than Ian. You could have rained toads upon their heads.
I'm not 'called' to activism - at least not yet. As the son of a preacher with a pronounced limp, I do know awkward. Some day, turn it inside out. See the fear in their eyes. Stare Back, and keep staring. Make 'em scatter like water buffalo, and you're the lioness takin' one of them down for dinner. . .
I'm sorry. They lost an opportunity, we all know that. You behaved well. I'm pretty sure that more than a couple of those ladies had no clue how to act, and they're still bothered by it. Maybe next time.
Those situations are so hard and painful. The Down syndrome becomes the big, white elephant in the room that no one is talking about, everyone is trying to ignore, but everyone is quite aware of its presence. As the person who brought the elephant, you aren't always sure what to do.
I have found that it really is up to us to make it easier for strangers to "see" the child we "see". Most people don't know much about babies with Down syndrome (I didn't before I had my son) so I think people don't know what to say. They don't want to say the wrong thing so they say nothing.
Sadly, the role of prenatal testing and abortion complicates things even more. I think some people see us with our babies and wonder: When did she know? Could she have aborted if she wanted to? They don't just see a mother and her child. They see a mother and a child that might never have seen the light of day had his condition been diagnosed prenatally. It's horrible.
After a year, I find it much easier to talk about the fact that my son has Down syndrome with strangers. I volunteer information. Once I break the silence, i find people are much more comfortable. They make the effort to really see my son for what he is. An adorable baby who just happens to have Down syndrome.
Ian is a beautiful baby, and don't be so quick to blame is grunty squeal on his Ds...could just be a boy thing. Good for him for making his feelings known so clearly!
Whi
OOPS! I just reread my comment after I posted. I meant to say "really see my son for WHO he is" not "what he is".
Oh and forgive the random " Whi" at the bottom of my comment. I am typing with a baby on my lap, who occasionally hits the keypad.
Well it's your bro here. "Poop-Nuggets" is my new favorite word, it's just brilliant! Well I wanna say poop-nuggets cuz I haven't gotten to hear the uneasy squeal yet!
I was seriously jealous! I also liked what Elbog (there's another good one) had to say, although a bit wordy, I think "He's got DS and we love him," would suffice. And your experience really helped me to consider how to handle a situation like that. I think I would have said, "Oh Poop-Nuggets, can I hold the boy?"
Love ya Anne
Hey Annie. If I were there in MN with you, you would have to beg me to give Ian back to you. I'm not afraid of DS:)And I would love to just sit and listen to his funny noises....That is so cute.
Love you.
Doggone it! (mixed with some poop nuggets of course!) See, I've always been one to use shock value to wake people up a bit. How many times, as a child, were you FORCED to learn something you really wanted nothing to do with?
While pregnant with Angela I went on bed-rest, and a leave of absence from work, at 16 weeks. When she was born at 35 weeks none of my closest co-workers called or anything. BUT..they DID want to come over shortly after she got out of the hospital. I felt like they came to stare. I don't know if they were staring at the DS (you couldn't really see it on her at that age) or her size (all 4 pounds of her.) But I remember getting up at one point, handing her off to someone and saying, "Can you guys hold her a minute while I run to the bathroom?" This gave them a few minutes to aclimate without me watching in discomfort. It also FORCED them to see what she was....a new, but tiny baby. When I returned to the room the mood was MUCH different and the usual baby questions were flying. Soon everyone was asking to hold her.
Oh, and Angela made some weird noises too. I later learned it was her expressing pain from the constant silent reflux she was experiencing.
Yes, that sounds awkward. You will find your way though. With each passing situation you will learn something about others and about yourself and how you want to present your son. I sure have. I take any opportunity I have to give others a correct perspective of Down syndrome, as long as they are willing to listen, and certainly try to do so in a tender way rather than a teachy, defensive way. (though I have been guilty of that) You will figure out when you have those moments and when you would rather just let it roll on by.
Ian is a doll. I would have been all over him! :)
It's not easy, and sometimes I am not able to do it, and maybe, yes maybe, I am a masochist, but I find myself staring down those folks, acting like "What? Is something odd or different? What's the problem?" I just act like there IS no issue because really, in my view, there is not. And I almost seek out the awkward comments and things...I don't know if that makes sense...but I almost feel like "Go ahead, fire away, because whatever you got I'll give it back to you and intelligently too."
Granted...I haven't had any real a--h--- comments just yet, so I am probably going to be floored one day. But in those situations, on my good days, I go in ready to throw down.
:O)
But I am sorry that happened. Complete and total poop-nuggets.
It'll get easier.
I think.
I agree with all the posts here. In time you will be able to raise your eyes to the throngs, and then raise your eyebrow, daring them to twist their face. I actually have a little fun with it now. I guess it takes time to get there.
Baby showers are awkward to begin with. I think you did well.
As an aside, soon after Will was born I made sure that my older son was placed in an inclusion kindergarten. I then volunteered in the class once a week. There were two girls with DS there and each time I went in the class it took everything in me not to go and give them each a hug. I would have gladly held Ian, and loved every moment.
In my opinion, you were the luckiest mom in the room that day.
Poop Nuggets is right. It will get easier. Had I been there, I would have scooped Ian up and snorted at all those goofballs right along with him.
Hi Annie,
My three vikings are 9y, 6y and 6mo old. I am a physical therapist and having been around a lot of different kinds of disability for years, I have been surprised all 3 times that my kids had no big issues (although of course we never know what could happen further along, physically, mentally, socially etc.). This time around, as I checked my newborns palms (having counted toes, fingers and all that) I remember the anxiety I felt - not about my son possibly having Down syndrome but having to face OTHER PEOPLE and their views on the subject. While that situation didn't present itself, the feeling sticks with me, that my problems would not have been with what was "wrong" but how others might take it. I specifically resent it when people are sorry for someone for being disabled. It's a sympathy/empathy thing; Be supportive and encouraging, but don't think or say: poor thing. Especially if the issue is not a sickness, but a reality and essential aspect of the person. That would have been my battle; to convince people (including my parents) not to be sorry for us. Anything but that.
But let me tell you: if I had been at that shower, your hands would have been free the whole time...
Your Ian is a beautiful boy and you are all going to have so much fun as he begins to show more of his personality. It's always so much fun to get to know a completely "new" person, who is experiencing everything on earth for the first time, we can really learn from that.
And about the sounds he makes, it may be something awful that I could never imagine, but at the risk of sounding patronizing I will share with you something my littlest does all the time (when not happy). He makes the sound Jim Carrey made in Dumb and dumber (I think? - he was in a car, singing to the driver, if I remember right) when he said: Want to hear the most annoying sound in the world?
Yes, that sound, and lots of it...
Makes me laugh, which is better than crying I guess...
The viking mother
Wow, Annie. I'm sorry. How unbelievably rude. Loving what Kim said.
Everyone- Thank you all for your kind words and for your affirming comments. I will respond to each of you during the next few days.
lintofpocket- Thank you for the hug. I needed that. I understand your first comment, I'm at that point right now. I'm glad to hear that I'll get more accustomed to these situations.
Cristylynn- Thanks for saying that you think Ian is cute. I think he is too, if I do say so myself! ;0) Thanks also for the positive reinforcement concerning my reading his signals. That is encouraging.
Mary C.- That is helpful to hear. I like the a--h--- meter idea. I think I'll use it in future!
Hi, Annie! So glad to "read" you!
If I'd been at the shower I would have been an Ian hog. Honestly, I'm more drawn to babies with Ds than I am typical babies. They remind me of Archie's precious baby days and somehow, holding these babies, takes me back to that space in time when I wish someone would have told me to slow down and soak it all in.
People will understand and people won't understand. I think Kim gave you excellent advice. He seems to be very useful like that! :-)
I wasn't going to post because I feel like I'd just be repeating everyone's comments...
But I will anyways. My Chase is still young...and sometimes I still feel that awkwardness. That white elephant feeling. But, honestly, it has gotten better.
I used to look deep inside every compliment someone gave me about Chase- wondering if it was said out of pity, wondering if they 'saw' Ds. Now it's easier to think- "Yes- he is the most adorable, sweetest baby there is."
I have some friends whose method of 'supporting' us is to not even mention Ds. And I think that hurts more than if we just talked openly about it.
This reply really isn't going anywhere. I guess what I really want to say is it will get better. And you will get more adept at these situations. And I'm learning right along with you!
Kim- Yeah, I was worried about losing my friends when I introduced Ian to them. They, on the other hand, have been so warm to him, and to myself as well. I am very thankful.
Thank you for your guidance, Kim. It is helpful to learn from you, one who has traveled the path that I have just gotten onto.
elbog- I like the "rained toads upon their heads" comment!!! I guess I did have power over them; Ha, ha, ha! (That was my evil laugh!)
You're a PK! I'm an MK! :0)
Thanks for saying I behaved well. These are uncharted waters I'm navigating!
Chris- You are so right about there being an elephant in the room that no one is addressing. Very well put.
I am so appalled at the statistics of mothers aborting their babies if they know the baby has Downs. I cried when I heard that statistic. It is SO sad.
It's good to hear that people respond well to you talking about the so called elephant in the room. Thanks for the advice!
Davey-Doo- Wow! Hi there!!! I didn't know you knew I had a blog! I just started up. I hope I don't say something stupid that I'll end up regretting! C'est la vie! I know you would have for sure volunteered to hold Ian, you sweet thing! Love you tons! (For those of you questioning why I'm saying "I love you" to another man, Dave is my brother!)
Amber- Thanks, I know you would! Love ya!
Leah- Thanks for understanding. Good strategy, leaving the room so your friends had a chance to be with Angela and "see" her for what she is/was; a sweet little baby!
waldenhouse- Thanks for your words of encouragement. I do hope to find my "sea-legs" soon! ;0)
tricia- Your fiery comments inspire me. I hope to get that kind of courage one day!
Kelly- Your son is darling! Thanks for your kind words. I wish you could have been at the shower to hold Ian!
yankee- You are fab! Wish you could have been there too and we could have snorted together!
my three vikings- I've gotta tell you I am so thankful for people like you-P.T.'s, I mean.
Yes, you are right. There is a fine line between sympathy and empathy.
I guess we're in good company with the funny noise thing!;0)
Thanks! I think Ian is very cute too!
Elizabeth- Thank you for "being in my corner". Hope you are doing well!
Anne- Thanks. It's interesting you mentioning the value of slowing down and soaking it all in because I did just that this week. We had been going and going. I wonder how much of it was running away from Ds, afraid to stop and feel. But I did this week and it has been really good. It feels healthy to me to "be" in this time and space.
Laurie- It's nice to have you as a fellow traveler.
Are these close friends of yours that don't mention Ds? Are they worth taking the risk and talking about Chase's Ds? If not then it's their loss not to fully know Chase and yourself.
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