6 Things Down Syndrome Parents Wish You Would Stop Saying
5. Babies with Down syndrome are just angels!
After getting a diagnosis and sharing it with the world, parents inevitably hear this, or something similar — people with Down syndrome are so loving, or they’re always happy! — because people want to find something positive to say. And people who aren’t familiar with Down syndrome believe it a lot of the time. They believe that people with Down syndrome are just little balls of love and sunshine and happiness, and they never get angry or sad or upset.
Apparently, only “normal” people experience the full range of emotions.
While people with Down syndrome are pretty dang awesome, they’re still people. They are happy sometimes, yes. And sometimes they get sad, or frustrated, or angry, or stubborn, or mean. They aren’t perfect little people who exist to smile and make us all feel better about ourselves. They’re people. Babies with Down syndrome cry, kids with Down syndrome throw temper tantrums, and adults with Down syndrome aren’t always happy.
Now I understand what not to say, and why. Which leads to the next question: What DOES one say?
1. (Say nothing. Really. Wait for the unhappy mother to change the subject.)
2. If silence isn’t your thing, try: “Why are you telling me this?”
But then, I’m a man. A possessor of the dreaded Y chromosome. When a friend or acquaintance tells us of something that’s, shall we say, less than supremely fortunate, our immediate reaction is to seek a way to repair it. Accordingly, once we’ve learned that a woman with such an announcement generally wants sympathy rather than remediation, in response to a statement such as “My baby has been diagnosed as having Down’s Syndrome,” we hold our tongues and look for something we might be able to fix.
Given that the syndrome is genetically based rather than a potentially curable disease, that’s probably a good idea anyway.
1. What would you say to someone who had a “normal” baby? Probably congratulations, or talk about how cute the baby is, right? The same things are still applicable.
2. If it’s brand new information, you can always ask them “How do you feel?” or “How are you doing?”. It’ll help you gauge how they are handling it. And then if they are having trouble with the diagnosis, it gives them an opening to talk about it.
I think I get it, Cassy. But no matter what someone’s situation may be, there are certain grindingly frequent responses from acquaintances and strangers. A person may come to hate hearing them, because they’re simplistic, unthinkingly (or intentionally) rude, or darned repetitive. However, you either react and snap back at people, or you learn to speed people past them and onto new, relevant, better-quality parts of the conversation.
If the only response I’m allowed after such significant information is shared is to ask you to expand upon “How you feel,” we’re not really both in the conversation at all. And if it were me, being asked how I was doing or how I felt also implies I’m dealing with bad news, so why is that form of implication okay and not others? (Abortion comments aside, as being too out of reasonable bounds to consider.) Just to me, at least, the cuteness comment as a go-to seems like a discordant and superficial response: “My child has Down’s Syndrome.” “Oh, well he/she’s sure cute.” Huh? That’s just my personal style though, so it might flow naturally for someone else. Could I just get the benefit of the doubt that I wouldn’t deliberately try to hurt someone or stomp on their emotional landmines?
Isn’t there a middle-ground between it being assumed I think your child’s a terrible blight or curse and having it assumed I think your child’s non-stop joy and unicorn glitter? Could you assume I’m somewhere in there? Having a Down’s child in the family will have unique challenges AND unique rewards–just like every individual child brings–and most grown-ups get that, even if they don’t have the right words to say it in real time.
Besides, I’ve also found people are very different and what drives one absolutely mental isn’t even a blip on the radar for another. I really DON’T CARE if people mispronounce my name, as just a silly example that happens EVERY DAY. I’d prefer to move onto the business at hand, rather than indulge in an extended, rapport-building recital of my name back-and-forth until someone thinks they have it perfected. It’s especially weird with phone reps who I will never speak to again. However, that’s what people want to do, because they assume I DO care and want to please me, or because they think they would care if they were me. In either case, I’ve learned to take it as an expression of good wishes–not in the way I’d ever choose–but a sign of people’s essential kindness and friendliness even so.
Of course, with the far more important situation of one’s child’s situation, it could be tougher to be patient, especially if you thought people were making mean-spirited remarks. But mostly, we’re not. We’re well-meaning, but too ignorant or unrehearsed to come up instantly with just the right thing to say.
I think I might find it more useful, like another commenter implied, to get a list of positive ways to respond to a child and family with Down’s syndrome that have the sliver of a chance of making someone happy. Top 5 compliments I love hearing about my child with Down’s Syndrome. I’m not sure I need another list of reasons someone might assume I’m being an insensitive or hateful jerk. I’m not, and there’s enough of that attitude going around.
I understand your frustration with some of the remarks people have made, Cassy, but I think you are being unfair. I have 2 sons who are intellectually handicapped and when people first met them I often heard comments such as “oh, they’re so cute”, and sometimes “I’m sorry”. I get it. They want to say something positive about them and I appreciate that, and it *is sad that they will never lead independent lives. Sad for them and sad for all of us. I don’t blame someone for saying that. The abortion comment is detestable, and so is the one about not having other children, but I think the rest of the comments are simply indications that people are wanting to be positive about your child, and maybe recognize that it is unfortunate that they do not have the ability to grow into independent adults. Being honest about their limitations, and how we wish they didn’t have them, does not diminish in any way the love we have for them or our gratitude that they are in our lives.
Completely agree with CT and Jane Wagner. Aside from the obvious abortion comments, most of us really are just trying to be kind. Years ago I was walking behind a mom with her newborn. Cutest baby I’ve ever seen. Had Downs syndrome. I ended up not saying a word because I didn’t know if she would find my comment patronizing. To this day I regret it, but now, having read this, I’m not so sure I was wrong.
Everyone’s so offended these days that it’s hard to say anything to anyone anymore for risk of offending. Parents are offended because I can’t automatically tell the gender of their baby but being general neutral and saying “it” certainly doesn’t seem like the right answer either. Also, I don’t have kids of my own so, quite frankly, I wouldn’t know to ask about how they are sleeping (although I do now, so thanks!). Can we please stop being “offended” and just assume that people have good intentions. It would save us all a lot of heartache.
Jane and JAW, well put. After Cassy’s previous, very touching article about her child with DS, I was pretty surprised at the “everyone is stupid and offensive” attitude of this one, especially after admitting that people are at a loss in such situations and are grasping at how to make a kind or at least positive remark – except for the abortion remark, of course, which is just plain sickening.
Good point! Between being politically correct, and all the new individual, often contradictory ways you can offend people, it’s getting harder and harder to communicate.
As I sat here reading the comments, I remembered that when I found out I was having a girl, half of the strangers commented that they were sorry,”because you know…girls are so difficult”
I would just smile and respond that I was thrilled… after all my mom said I was no trouble at all.
I just try to keep it in context, my frustration from other peoples’ comments usually is based on my own opinions or feelings about what ever they commented on…
I suggest “that will present some challenges but I am sure you will manage it beautifully”
So. We are basically left with NO idea what to say to someone who announces that their baby has the syndrome.
Somehow, awkward silence doesn’t sound like a winner either.
I’m with Bozo.
Unfortunately, that’s not true.
More and more people DO think it’s acceptable to say that to women who [insert long and varied list of reasons why some people think someone else should not have children].
Down Syndrome is on that list, as are a host of other medical conditions. Income (or the lack of it) is on that list. Wrong “timing” is on the list. “Interference” with “opportunities” is on the list. For some, skin color or religious preference is on the list.
This is what legalized abortion has done for us. It’s now acceptable to MANY people to think that SOMEONE should have an abortion for many different, and often trivial, reasons, and some percentage of those people verbalize it.
And, sooner or later, those people will vote for making those abortions MANDATORY. Oh, not for trivial reasons.
Not at first, anyway.
A friend of mine went to the doctor, found out she was pregnant, and then was (as she put it) browbeaten by the doctor to abort her baby because “your boyfriend obviously doesn’t care, and you don’t have a job.” She was reduced to tears but stuck to her course.
That was 1980. She married her boyfriend (the child’s father) before the birth, and they had two other kids together. The baby “who should’ve been aborted” is now a fully grown woman with a college education and is pursuing a career as a Shakespearean actress.
Gee, doc, what a thing to be wrong about!
It’s not a consequence of abortion- it’s a consequence of being a welfare state. These people take a look at a child born under less than ideal circumstances and think “Wow, I don’t want to be paying for this.” This is going to happen more and more with every medical condition as time goes by. When someone else is paying the bill, they want a say in how the money is spent. When it’s the government, they will make the rules.
In Europe they can legally kill babies AFTER they’re born. All under the guise of compassion, don’tcha know.
More examples of things such parents would rather not hear:
“Sucks to be you!”
“Congrats on having a useless eater who will suck up resources from the productive for the rest of his/her life!”
And finally, “Boy, you sure are sanctimonious for telling people what not to say when you stick your defective child in their face and demand a reaction, aren’t you?” Because that’s what the writer of this screed is.
I guess I should hide my defective child away from the public then, huh? Just in case anyone gets offended by his hideousness or feels awkward.
I think I would say “God Bless You.” It does take a special person to not kill a baby that is not perfect in the eyes of society in this death culture.
K-Man,
The sayings you quoted, did you hear them growing up? If so, do you realize they were talking about YOU?? Just asking…
Cassy,
Cute kid! You must be so proud!
#6 Agreed. If you know what I mean.
#4 Certainly agreed, especially if Robertsonian translocation is present.
#1 Just don’t expect any support from me.
Most people don’t know what to say or how to react. There are worse reactions than 2,3,5,& 6. Most people usually say, in horror or surprise, “Didn’t you know?” instead of outright saying we should have had an abortion, but they mean why didn’t we abort. The best reaction we had was from the Dr. who delivered my daughter,”Congratulations on having a baby!” as opposed to another Dr. in his practice who tried to browbeat us into an abortion. The reaction that hurt the most was immediate family avoiding coming to the hospital, or showing up and crying and praying for God to forgive us.
A nice response would be asking about the baby’s general health and or development, like any other baby. How’s she sleeping?, Is she keeping you up nights? She has your smile, his hair, whatever. When most people see how normal it actually is, their usually ok, though you occasionally still come across parents who yank their child away from yours at the playground or library because they think DS might be contagious or something.
I’ve delivered a few babies that were quite a surprise- not so many now that ultrasound is standard of care. As residents, we were taught to say “What a baby!” It pretty much works in any situation.
Say something that shows acceptance, support and/or interest depending on your relationship with the family.
A simple, “Congratulations! We can’t wait to meet him/her!” is fine.
If you have a real and positive story (not an, “I heard about this kid with Down syndrome once who…”) to share about your personal experience with someone with Down syndrome then do it: “When I was growing up the girl next door had Down syndrome. I always had such fun playing with her.” Hopefully it is needless to say to leave out any negative experiences you may have had at this point.
Expressing surprise and interest is fine. “Wow, I bet you were surprised! How/When did you find out?” Match your reaction to their story: “How terrible to be told like that! Well, we are just going to love your little one to bits and show your doctor that the world is not full of jerks like him/her.” Or “I’m so glad that your doctor could see just how precious your little one is. We certainly think she/he is just lovely too.”
It is great to let the parent teach you (which is what the sayings above don’t do): “I don’t really know that much about Down syndrome. What can you tell me about it?” Then listen and express how you look forward to learning more particularly from their child. Be genuinely excited about being a part of their baby’s journey.
A new parent is going to feel particularly vulnerable about their baby and their new role of parenting that child. Saying things that let them know that you love/accept/support them and their baby is what the parent needs to hear at that point. Not to be alienated or pigeon holed by stereotypes.
Yes! That face look like something to be very sorry for. And yes, a deformed fetus should be aborted. It’s cruel to force a child to suffer so that you could make yourself look like a hero for taking care of it.
Kathryn, if you think that the only reason people bear their special needs children and raise them is so they could make themselves look like heroes, then I not only pity you, but you scare me that after I die my daughter will have to protect herself in a world filled with people with your beliefs. My wife and I are raising our daughter to be as independent as she can possibly be since there will be no one to protect her,not the government,or the Church.
kathryn,
you must be very young, or very ignorant, and almost certainly have never been face to face with this. It’s questionable whether you have even had the gumption to become a mother yourself. Obviously you think only perfect people should be able to have their perfect babies.
Interesting thing about life: people who lack compassion are often forced to learn it the hard way. Your day is coming. Keep that in mind the next time you have something heartless to say, whether on a public forum or in your private life.
What makes you think this child is suffering? From the looks of it, he has a very supportive set of parents, and is doing well. People with Downs syndrome can often grow up to be productive members of society- certainly not the drain on resources a great many of our citizens are who are incarcerated or bent on fleecing the rest of us every waking moment of their pitiful lives.
Here’s the deal- there is a sliding scale of value of human life in this world. Personally, I’m glad we set the bar very low in this country- you never know when you might end up on the bottom of the slope. You’re one car accident away from it right now.
Indeed they can.
Be productive members of society. One in my small community(30,000)is a sacker at a local grocery I frequent. He has been for the last 20 years. He is cordial, efficient, and a decent human. Certainly worth the air he breaths…. which is more than I can say for many obama voters with greater opportunity/ability.
Kathryn
You have a tremendous future in The One’s New America.
I hope that you live long enough to be old in it.
Kathryn, your response sounds all too familiar in today’s popular discourse among Progressives and Liberals. How easy it is to be flippant about the death of humans you feel don’t measure up to your standards, it is the casual disregard for human life based on prejudicial standards that found a home in the National Socialists ideology with its benevolent killing machine.
I pray you’re not a mother. If you are, you’re not fit to be one. Tie your tubes for the rest of us.
Margaret Sanger redo…
Kathryn:
Why shouldn’t people like you, when you get old or sick simply be terminated. No sense in our paying for you.
I agree with you. A child was born in a nearby hosp;ital with only half a skull. The mother had 3 or 4 other children, each by a different father, and demanded that the infant be kept alive for religious reasons. After staying in the hospital for a month or two, the infant was moved to a “nursing home” where it finally died. I’m sure the care of the infant must have been very costly. I am really tired of all these right to lifers expounding on abortions. If they want those children, they could always adopt them.
They do adopt them, you stoopid fuc!
Well, as long as you are not drawing on the public tit. Or expecting special dispensation for your Downs kid… then I am good with where you are.
Peace… love… yadda yada.
Typically, Down’s children will at minimum receive Medicare, and they can receive some forms of Social Security as a child depending on parent’s income. As an adult, they will receive disability.
I have no problem with those born to parents who provide for them. However to place the burden on society…. no.
And without a loving two parent structure with affluent or really dedicated parents. Then allowing such birth is a net drain on society as a whole.
Who cares what you have a problem with? Killing kids is bad. Luckily its not up to you who lives and dies.
a drain? A human being born to an American citizen with special needs is a net drain of resources? There are millions of Americans and illegals that should be kicked off the government subsistence teat before we even begin to worry about resources being spent on our developmentally disabled citizens.
Indeed, Tammy.
And the person who wrote about the drain on society probably considers him/herself a libertarian, but without the cognition that no one is a burden on another person in a FREE society. The left has convinced many libertarians that there is no such thing as a free people and that the best they can ever hope for is to be left alone. Wrong on both counts.
In other words, in a free America, we pay our own way for ourselves and our children and the question of anyone being a drain on society dissolves to nothing. And a free people is a generous people. We do help each other.
CassY, I could write an article about what not to say to adoptive parents. Especially back when they were little. But I realized even then that most people are well-meaning and can’t be expected to know all the correct and incorrect things to say to an adoptive parent. Same is true in your case. I’m assuming your boy is still young. In which case, know that it will get better as he gets older – probably because you stop being so sensitive about it.
I’m a father of a 15 year-old-girl who is on the autism spectrum and I remember hearing some of the same type of comments. I too, balk at the old terms (“deformed”, “disabled”, even “mentally challenged”). They’re too strong and too negative. Just as a person’s skin color doesn’t say all there is about a person, neither does any other aspect of their genetic make-up.
It’s important to realize is that every child has it’s own unique set of abilities and challenges. The job of parents is to help their children to be the best they can be, capitalizing on their abilities and helping them learn how to overcome the challenges, whatever those may be.
People generally reach for platitudes whether you are telling them that your parent has Alzheimer’s or that your spouse is dying of cancer or that your child has a disability. Most people honestly have no idea what to say. Of course it is felt at a much deeper level when you are the parent.
If a person has lived with a disability since birth, they are probably completely comfortable discussing it. The person just coming to terms with a life-changing disability is probably feeling many emotions. It is probably wisest to say nothing on the topic unless the person wishes to discuss it. And if you are talking to a parent of a child born with a disability, the conflicting emotions are probably so deep that it may be safest to simply comment on the weather.
I feel compelled to write this because I fear this article might make even more people uncomfortable conversing with anyone with any disability. Many people with disabilities feel alienated in our insane society where people are taught to be hyper-sensitive about offending, while, simultaneously, taught to pass judgement.
As the government assumes control of healthcare, many people in our society will feel an even greater right to pass judgement on who should be born, and when one should die. This will add yet another burden to people with disabilities and to parents with children with disabilities.
Open, honest communication is more important than ever.
A couple I know have a downs syndrome teenager. After much therapy he still cannot speak or go to the toilet properly (he often smears the excrement all over his head). They are rarely invited out as a family, and he is constant work. They have no idea what will happen to him when they die, but till then, they will be looking after him 24/7. He is generally a happy child and adores his parents. I dont have any answers, its just hard.
How about “Oh wow! Is his heart okay?” does that pass the test or will that make you scurry back to your keyboard for an update to the post? lol
And yeah, my cousin was told by another cousin (no one is fessing up on who) that she should have an abortion, that she’d make a terrible mother. She didn’t win any awards, that’s for sure, and her daughter’s father just spent his first Thanksgiving with them NOT in a prison visiting room, but the daughter is an amazing young lady (with a few rough edges). Breaks my heart that we might have had to do without her.
The author oozes bitterness. That is ugly! I like down syndrome kids. They don’t ooze bitterness. They aren’t ugly.
As other’s have said before me. This an awfully ugly article, and selfish (with exceptions) at that. You are focusing on what the people are saying and not what is behind it. You probably had an awful time coming to grips with your child having down syndrome. How do you expect someone to react to it when they just find out?
I remember when my Grandmother passed away, i told my friend at school not an hour after i found out she had passed. He asked me “Why do you seem so happy about it?” My grandmother had just died and i was more than old enough to know what that meant, and i couldnt even get that emotion right. How do you expect to drop a bomb like down sydrome on someone and expect them to knock that curve ball out of the park? No one could do that. Just like if i told you my Grandmother has just passed away, you know what the likely response from you would be? “Oh, i’m so sorry”. People fall back to the “safe” responses when they are caught off guard. Thats human nature.
Your expecting humans to not be humans, you are not going to get an answer that you like unless you are talking to someone who knows what you are going through, which would most likely only be a doctor or another parent that has a kid with downs syndrome.
I have one question for Cassy: What went through your mind when you first learned you were having a Down baby? Did you feel sad? Did you cry? Go through denial, anger, grief? Whatever you felt, I’m guessing you didn’t jump for joy. Friends and acquaintences — upon learning about your baby’s handicap — might simply be experiencing empathy when they awkwardly convey regret or pay hollow compliments. It has taken you months probably to get to the place where you accept and enjoy Wyatt just the way he is. Is it fair to expect outsiders to find that peace and clarity in a matter of seconds?
I get the last four points to some degree, though frankly “I’m sorry” is just a common thing you say when someone has to deal with something hard. Yes it IS hard (not just for you) but for your child to be different their whole lives, take it as someone ACTUALLY having sympathy for what you and especially the child will have to deal with (you DO remember what sympathy is, right? your bitterness hasnt washed that emotion completely away has it?). And also “she doesnt look like she has downs” is also meant to be somewhat of a compliment, you DID say you wanted normalcy right? Well thats them saying “HEY! YOU GOT IT!” And you’re UPSET by this?
As for the first two points you made? Just.. wow… you sound far more like a complaining P.C. liberal than anyone I’ve read articles by on this site. I mean seriously someone is awkwardly trying to compliment you and you’re to “butthurt” to take the compliment? Just… jesus lady, get off your high horse. And the Angel one? Just as much trying to compliment your kid. Hell at the same time you turn right around and if someone says “sorry” you put up a picture of “does this face look like you should be sorry for it?” knowing people tend to refer to children as “angels” in reference to ALL children. I thought thats what you wanted after all, to have your kid treated normally? Dont people normally call children angels? So whats your problem?
Seriously what I read in this article was someone with a serious axe to grind who throws in four responses which are both NORMAL compliments and NORMAL social reactions (you know that thing you claim you want to be treated as right? Normal?) or reinforce what it is the author seems to want (to be seen as normal), throws them in with actual semi-hateful things to say about aborting the kid or never having more kids.
I mean really if you had just listed those two points I could have maybe seen listed “I’m sorry” with it as well for a total of “3 things to never say.” But in this article? Four of those things are not at all things you should be taking offense to, and as I said you sound like a rather butthurt/bitter axe-grinder here and far more “PC liberal” than I’d expect on this site. Get over it.
#15 Keaton:
Maybe she has cause to be bitter. Maybe you’d be bitter, too, if you were in her shoes. I walk in her mocassins every day; I’ve been told – by my son’s father no less – that he should never have been born and therefore he had no obligation towards him. I’ve been rudely asked why I didn’t have an abortion, and also why I didn’t institutionalize him. Maybe parents of children with other special needs also have to deal with this; I think with Down Syndrome, being put in the position of having to justify our child’s existence is pretty universal. I’ve had to fight for basics in his FAPE that would have been provided without thought to a child with ADD, and I worry that the liberals whose attitude on anything remotely connected with sexual conduct without consequence and abortion on demand is a hedonistic free for all taking it the next step and either mandating the destruction of the unborn DS or a global takeover of how we raise our special needs children.
To #5 k-man, #9 Kathryn, and #10 Fantom – some links of notable DS achievers. These people are my heroes, and the reason I have been able to inspire in my own child with a “can-do” attitude.
http://www.amazon.com/Light-Into-Dawn-Randys-Miracle/dp/0966939301
http://en.wikipedia.org/wiki/Chris_Burke_(actor)
http://en.wikipedia.org/wiki/Andrea_Fay_Friedman
http://www.sujeet.com/
http://users.psln.com/sharing/Michael/mainMichael.html
http://www.bernadetteresha.com/pages.htm
When my daughter told me that the doctor said her baby was a boy and most likely had Down Syndrome I said “how are you doing with that?” and let her talk. When I told my father, who was 88 at the time, he said, (after thinking for a moment) “he will make better men of his brothers and better people of all of us.” Dad explained that the difficulties and the challenges that come with Down Syndrome will shape us all with compassion and patience. That was from my father.
I once read,(don’t remember the source) that a society is judged by the way it treats its weakest members.
I read some comments here that sound horrifyingly similar to what was said in Germany to justify the “final solution”. God help us all.
Your dad was so right. As a doctor, my real education on this whole issue occurred when I was at a medical conference and listened to a mother talk about why she wouldn’t abort her severely handicapped baby. This is just one of the stories she told: “One night, I tucked my other (healthy) son in bed at night and told him how much I loved him. He said- ‘I know, Mommy, because of how you treated my brother.’” That was a real eye-opener for me- I had been taught that the “best thing” for everyone was to terminate this kind of pregnancy as soon as possible- but that was not always so. Not at all.
The appropriate response to “My kid has Down Syndrome” is “I’m sorry”. When you tell the unsuspecting person “My kid has Down Syndrome” you’re telling them “I have a problem”. The natural and caring response to “I have a problem” is “I’m sorry that you have a problem”.
As I read your list I see that you don’t want normal responses, you don’t want Polly-Annnish responses, and you understandably don’t want vile responses. You’re miffed because you dump a load of bad news on an unsuspecting person and they don’t give you the response that you’ve predetermined is appropriate. If you want a “better” answer then you need to lead them to that better answer.
But I have to tell you, there is no good answer to “My kid has Down Syndrome” because any answer outside of “I’m sorry” is just the person buying time thinking about all of the bad stuff that could happen to them and their kids. You’re demanding that people be more understanding of you and your concerns with zero understanding of how your news affects them. You may think your little knowledge bomb is all about you but it scares the stuffing out of whoever you tell. It reminds them of the frailty of life and their mortality. Just as you catch more flies with honey, you get more understanding with understanding. If you spent a bit of time thinking about how your news affects the person you’re telling, why you’re telling them, and what you expect from them then you might get results more to your liking.
“You may think your little knowledge bomb is all about you but it scares the stuffing out of whoever you tell. It reminds them of the frailty of life and their mortality.”
Dern tootin’. Our family has a handicapped member, not Down, but a situation that was equally not his fault. We experience the averted eyes in public, the loud children’s questions, the studious avoidance of acknowledging the existence of any special condition … and when people do consent to talk with us, they ask questions designed to place the blame on the victim. It all comes down to people encountering their own mortality. And people don’t do well with that, in general. Cut them a little slack for goodness sake.
ChrisS is right Cassy. If you don’t think it’s a big deal that your child has Down Syndrome then why bring it up at all? That kind of information is not exactly like saying “My kid had lunch today.” Instead, you are effectively saying “My kid is genetically different than most kids.” That’s a very awkward position to put your unsuspecting listener in because it is such a loaded topic these days what with abortion on demand and all that. So relax! If you don’t want an annoying answer to a tricky statement then don’t bring it up. Or take the trickiness out of it by telling your listener how you feel in the same sentence like, “My beautiful little whippersnapper came to us with Down Syndrome.” Then everyone knows the direction this conversation should take.
God bless you and your family.
ChrisS is onto something here with a stellar post above. You could alleviate much of your dilemma by expressing in some fashion how you feel about being the mother of a child with Downs & how you are coping with it, thereby providing valuable cues which would serve to guide people to the types of responses you find “appropriate.” IOW, don’t just leave it at the simple announcement that “I have a child with Downs syndrome.”
Downs…Down…..I’m with the last 3 comments. If you drop a conversational bomb on them, well-meaning people will blurt the damndest things. It’s because they don’t know how to support you, and they will default to whatever they seize on, in a kind of panic. The way to get around this is to give an indication of what kind of response you want, when you give the information.
As for the vile comments about how you should abort the baby, simply recognize those people as the kind who are unfit for decent society, along with criminals and adulterors, and move on. Make it a policy not to interact with them. They are a drag to be around.
Being a volunteer at the Duval Home brings me into contact with many such children and adults. They run the spectrum from almost infantile to almost able to live on their own without much support.
It all depends upon the child’s parents and their willingness to sacrifice a major portion of their lives to the upbringing and training/teaching of such a child. It isn’t for the cowardly nor narcissistic.
If you make the choice to hoe that row you will be rewarded immensely.
Cathy, I applaud your decision and best wishes to you and the little one. You have exposed yourself to a pretty large load of vitriol and ignorance by writing this article. I being not you would have written a different piece, focusing more on educating the ignorant about what it is and how you plan on handling the unique challenges that will present themselves on a daily basis.
In the end it all comes down to the fact that you have been given a child and that is the most wonderful gift any human can receive. It will change you in ways you cannot foresee and if approached in the manner which God intended it will make your former life seem empty and without joy.
If you have a few minutes, I think you’ll be inspired by the story of one of those people that the post-birth abortionists would do away with.
http://www.youtube.com/watch_popup?v=9xwCG0Ey2Mg
What a heartwarming story (brought tears to my eyes) that so well underscores the power of human potential & the importance of regularly taking stock of & thanking God for our blessings.
Thanks so much for posting that vid, W76; it made my day.
Thank you, for your kind words. I just want to remind some God loves and blesses all, and some never can see it. I try and show he is in our lives all of the way, and everyday!
This note isn’t meant for the author: it is directed toward the rest of you. I am a professional horseman and I just happened to be finishing a day’s work when a bunch of teenagers showed up for a group lesson. I didn’t pay much attention to them, city people all seem a little backward to a former remote ranch kid.
One of the instructors asked if I would help the kids get ready because someone didn’t show up. I laughed, because I will do anything to avoid rush hour traffic.
I watched the kids saddling their horses and they seemed too timid and slow. I told them to hustle like an old cavalry instructor taught me when I was the same age. I could tell they were half scared of me, but I tried to reassure them by showing them things about the horses and tack. They ended up liking me and they had a little more snap in their movement.
When it was over one of the instructors told me they were high functioning autism kids. I felt awful and asked if I did major damage with my gruff personage. He laughed and said it looked like it was just what they needed; that is to be treated like regular kids by a big tough guy who was willing to help and show them little things. He said I helped them a great deal.
it was a great experience for me, even though I had no idea as to what I was doing. Hopefully, this little anecdote will help one of you to put forth the effort to have a positive influence on a child who needs a little extra help. I think you never stand taller than when you bend down to help a child.
I think you made a great point. I coached a girl who had a down syndrome brother. One day he was telling me about being at camp, and that some kids had been caught smoking. I looked shocked, and said, ” Michael, did you get kicked out of camp for smoking? He got the fact that I was teasing him. We connected on a level we hadn’t been at before. He became my friend for life. We would both take opportunity to try and tease each other. Beloved that.
Should have been He loved that!
Wow, haven’t visited PJM comments for a while. Weird how some people can be so deliberately and aggressively rude – I was reading somewhere that a lack of eye contact in communication contributes to that.
I don’t see what’s ugly about Ms. Fiano’s article – it’s informative. (Always important to think before talking, huh?) But if I HAD found it ugly, I’d just have stopped reading it, not plodded through and typed in a rude comment. Weird!
As for the guys grousing about “asking” them to pay for the baby’s future welfare, what a hoot! Your taxes are coerced and the government class will spend them any way they please – they don’t even make budgets any more. If all the country’s children were whisked away by an alien spaceship tomorrow, do you think your taxes would go down a penny?
You eliminationists are the goofiest, though. Just be patient, we’ll all die eventually.
Merry Christmas to you and your family, Ms. Fiano.
Ms. Fiano;
In reverse order:
1) Whether people choose to abort Down’s babies or not is their own decision, although there are waiting lists for people who wish to adopt Down’s children:
http://www.washingtonpost.com/wp-dyn/content/article/2008/11/08/AR2008110801152.html
and thus, in 10 or 20 years’ time, Down’s syndrome people will become effectively extinct.
Personally, I don’t think that a country full of people without room or love enough for Down’s kids is a nation worth living in, or a people worth living among.
2) There’s less to be sorry for with a Down’s child than there is to be sorry for with a normal kid. The Down’s kid is likely going to achieve THEIR full potential.
The rest of us…not so much, huh?
3) They look the way they look, we look the way we look. They have Down’s Syndrome…what’s OUR excuse?
4) Whether you have kids or not is entirely your own business.
5) Are they angels? Maybe not, but the ones that I have known are Innocent of Sin. They do not labor under the Conceit of thinking that they know the difference between Good and Evil, and thus are pretty much what I imagine Adam and Eve were like before The Fall. OUR notions of morality are largely irrelevant to a Down’s kid, and this is pretty close to being an angel for my money.
It has been my experience that those we term “Special Needs” live in a state of Grace.
I suspect that that is why they make us uncomfortable.
6) Believe what you wish, but many of us hold that nothing happens on this Earth without the Will of The Almighty, and that it was not by chance that you were entrusted with the care of that innocent child’s Sinless soul.
Don’t sell yourself short…maybe you don’t FEEL special, and maybe you aren’t, but what you are doing undeniably is special, and in my book at least, that makes you special to have the courage and the grace and the love to even make the attempt to rise to the challenge put before you.
So many do not,even of “normal” children, which makes your example all the more humbling.
On this first Sunday of Advent, please accept my kind regards and blessings upon you and all of your family from a seaman out on the waters and far from home.
I just clicked through to your other article, “Choosing Life and Beating the Odds” where you described your reaction to the doctor informing you that your son has Down syndrome: “I almost immediately burst into tears.”
It seems very strange to me that you would expect someone else – who almost certainly knows almost nothing about Down syndrome, just as you didn’t before you got the test results – to have what you consider a “supportive, understanding, and positive” reaction. That’s great that you want to educate people about it, but if you want understanding, you should take the time to _explain_ first, rather than just drop a conversational bomb like “Hey, my baby has been diagnosed with Down syndrome.”
This article is insightful in that it identifies that all children should be assumed a joy rather than a burden…regardless of circumstance. Thank you.
That said, I agree with the majority opinion here that the problem does not lie in the inability of the average person to instantly come up with a response that walks the perfect line between acknowleging a down syndrome child is a joy, but not “an angel”.
The writer is demanding the impossible. She announces what makes her child “different” (not better, not worse, just “different”) and then blames the responder for not providing her with a response that makes her child “not-different”.