Becoming a Parent of Child with Down Syndrome
October 2, 2008 7:07 AM Subscribe
I Am Capable of More Than I Think I Am - Gregg Rogers discusses his introduction to being a parent of a child with Down syndrome for a segment of NPR's This I Believe.
October is Down Syndrome Awareness Month. Take a moment to learn a little more about how we're more alike than different. Or find a Buddy Walk - The NDSS reminds you that there are 350,000 reasons to get involved.
October is Down Syndrome Awareness Month. Take a moment to learn a little more about how we're more alike than different. Or find a Buddy Walk - The NDSS reminds you that there are 350,000 reasons to get involved.
Kind of a ChickenSoupForTheSoulFilter post and a bit on the short side considering the gravity, but wow, getting the bad news from an amnio and forging ahead anyway... that's a Mother and a Father with a capital letter there.
posted by crapmatic at 7:14 AM on October 2, 2008
posted by crapmatic at 7:14 AM on October 2, 2008
He seems like a wonderful father, but that doesn't mean he should be vice president.
posted by East Manitoba Regional Junior Kabaddi Champion '94 at 7:31 AM on October 2, 2008 [1 favorite]
posted by East Manitoba Regional Junior Kabaddi Champion '94 at 7:31 AM on October 2, 2008 [1 favorite]
Kind of a ChickenSoupForTheSoulFilter post
There seems to be a meme starting up that anything that doesn't present humanity as doomed, irremediably fucked up, etc. is "glurge" and should be kept off MeFi. I would like to stomp this meme with hobnailed boots and dump it in the sewer where it will be happy. Anybody got any hobnailed boots I can borrow?
and a bit on the short side considering the gravity
What? It's got two paragraphs and seven links, which is one more paragraph and several more links than it needs. The "MeFi posts should be long and full of links" meme is another one that's going in the sewer as soon as I get hold of those boots.
Nice post!
posted by languagehat at 7:56 AM on October 2, 2008 [9 favorites]
There seems to be a meme starting up that anything that doesn't present humanity as doomed, irremediably fucked up, etc. is "glurge" and should be kept off MeFi. I would like to stomp this meme with hobnailed boots and dump it in the sewer where it will be happy. Anybody got any hobnailed boots I can borrow?
and a bit on the short side considering the gravity
What? It's got two paragraphs and seven links, which is one more paragraph and several more links than it needs. The "MeFi posts should be long and full of links" meme is another one that's going in the sewer as soon as I get hold of those boots.
Nice post!
posted by languagehat at 7:56 AM on October 2, 2008 [9 favorites]
Someone should link to that WaPo story from a month ago about the man in Virginia who dove into a septic tank and held his son (a young adult with Down Syndrome) who had fallen in above the muck long enough to be rescued at the cost of his own life.
posted by BobbyDigital at 7:57 AM on October 2, 2008
posted by BobbyDigital at 7:57 AM on October 2, 2008
I'm against awareness months as a general rule. In this case, the subject is a complicated and sensitive one for this community as evidenced by the last thread, the other thread, then the metatalk threads. Never let it be said that ewkpates hesitated in the face of sensitivity.
It is difficult to see the other side of the issue... the parents who chose not to have the genetically disadvantaged child and on the next go round had a child that who grew up to cure alzheimer's or discover the unifying theory. While we can say that there are no easy choices and that this is complicated, we aren't going to hear the stories from the other side. Whenever we don't hear the other side - that's when I get nervous. In the interview, Mr. Rogers sounded as if he'd had a mystical experience with this child as opposed to his others, and that made me nervous too. Perhaps I'm just nervous. Is there a nervous persons awareness month? If so, I'm against it.
posted by ewkpates at 7:57 AM on October 2, 2008 [2 favorites]
It is difficult to see the other side of the issue... the parents who chose not to have the genetically disadvantaged child and on the next go round had a child that who grew up to cure alzheimer's or discover the unifying theory. While we can say that there are no easy choices and that this is complicated, we aren't going to hear the stories from the other side. Whenever we don't hear the other side - that's when I get nervous. In the interview, Mr. Rogers sounded as if he'd had a mystical experience with this child as opposed to his others, and that made me nervous too. Perhaps I'm just nervous. Is there a nervous persons awareness month? If so, I'm against it.
posted by ewkpates at 7:57 AM on October 2, 2008 [2 favorites]
Being young-ish and unmarried and childless, I'm generally humbled by stories about what it means to be a parent. This even more so.
posted by bookish at 8:28 AM on October 2, 2008
posted by bookish at 8:28 AM on October 2, 2008
It is difficult to see the other side of the issue... the parents who chose not to have the genetically disadvantaged child and on the next go round had a child that who grew up to cure alzheimer's or discover the unifying theory. While we can say that there are no easy choices and that this is complicated, we aren't going to hear the stories from the other side. Whenever we don't hear the other side - that's when I get nervous.
If you waded through the other threads as you suggest you did, you will see that actually there are plenty of people on Metafilter who are willing to give you the "other side" of this issue -- people who have had unpleasant or uncomfortable experiences with children or adults with Down's Syndrome and are eager to opine that their lives are not worth living and that parents who do not terminate them in utero -- hoping no doubt that their next pregnancy will spawn the person who cures alzheimer's or discovers the unifying theory -- are morally irresponsible. Really, the "other side" of this issue has been represented very vocally on this site; there is no dearth of representation on it.
Thanks for the post, plinth. It was lovely.
posted by onlyconnect at 9:01 AM on October 2, 2008 [1 favorite]
If you waded through the other threads as you suggest you did, you will see that actually there are plenty of people on Metafilter who are willing to give you the "other side" of this issue -- people who have had unpleasant or uncomfortable experiences with children or adults with Down's Syndrome and are eager to opine that their lives are not worth living and that parents who do not terminate them in utero -- hoping no doubt that their next pregnancy will spawn the person who cures alzheimer's or discovers the unifying theory -- are morally irresponsible. Really, the "other side" of this issue has been represented very vocally on this site; there is no dearth of representation on it.
Thanks for the post, plinth. It was lovely.
posted by onlyconnect at 9:01 AM on October 2, 2008 [1 favorite]
Here's that story: Father Who Died Saving Son Known For Sacrifice
When Joseph, 20, who has Down syndrome, fell into a septic tank Monday in his back yard, Vander Woude jumped in after him. He saved him. And he died where he spent so much time living: at his son's side.
posted by stavrogin at 9:06 AM on October 2, 2008 [1 favorite]
When Joseph, 20, who has Down syndrome, fell into a septic tank Monday in his back yard, Vander Woude jumped in after him. He saved him. And he died where he spent so much time living: at his son's side.
posted by stavrogin at 9:06 AM on October 2, 2008 [1 favorite]
When Joseph, 20, who has Down syndrome, fell into a septic tank Monday in his back yard, Vander Woude jumped in after him. He saved him. And he died where he spent so much time living: at his son's side.
I really thought for a second this was going to end with "And he died where he spent so much time living: in the septic tank."
posted by Falconetti at 9:19 AM on October 2, 2008 [1 favorite]
I really thought for a second this was going to end with "And he died where he spent so much time living: in the septic tank."
posted by Falconetti at 9:19 AM on October 2, 2008 [1 favorite]
I blame myself for not being understood. Those people don't represent the other side, they represent skepticism for the argument as it is given... they talk about the negatives of the experience. I'm referring to the positives of the opposite experience. A subtle difference, perhaps, a merely logical one, one that isn't as readily opposed by moral crusading.
As for people who die trying to rescue others: it isn't heroic, it's tragic, like someone skydiving without any instruction.
posted by ewkpates at 10:00 AM on October 2, 2008
As for people who die trying to rescue others: it isn't heroic, it's tragic, like someone skydiving without any instruction.
posted by ewkpates at 10:00 AM on October 2, 2008
Mr. Rogers sounded as if he'd had a mystical experience with this child as opposed to his others, and that made me nervous too.
Simply said, compared with raising a child without a disability, it is a vastly different path (I am on both). Some people find taking a different path a mystical experience.
posted by plinth at 11:08 AM on October 2, 2008
Simply said, compared with raising a child without a disability, it is a vastly different path (I am on both). Some people find taking a different path a mystical experience.
posted by plinth at 11:08 AM on October 2, 2008
I'm referring to the positives of the opposite experience.
I'm not sure why you believe it is difficult to find accounts of people who have chosen to terminate their Down syndrome pregnancy in utero and have not regretted that decision. Here, for example. Alternatively, it is also remarkably easy to find accounts by parents of how their healthy babies have positively changed their lives. Try a few mommy blogs, or maybe AskMe.
I guess I must still be missing your point. You think it is worrisome if this positive account of a parent with a Down's Syndrome child is not matched up point for point by a positive account of a parent who aborted their Down's Syndrome baby and then went on to have a baby that saved the world? Why? It's not like folks who get back scary amnio results don't have enough information about what they might be missing out on, because we are pretty much bombarded with that image of happy, healthy "normal" children in the regular media and Saturday morning cartoon commercials. It would seem instead that because so few fetuses diagnosed with Down's Syndrome are actually carried to term, it is the perspective from the link plinth posted that is underrepresented in our media. But I guess I'm just not getting your point.
posted by onlyconnect at 11:15 AM on October 2, 2008
I'm not sure why you believe it is difficult to find accounts of people who have chosen to terminate their Down syndrome pregnancy in utero and have not regretted that decision. Here, for example. Alternatively, it is also remarkably easy to find accounts by parents of how their healthy babies have positively changed their lives. Try a few mommy blogs, or maybe AskMe.
I guess I must still be missing your point. You think it is worrisome if this positive account of a parent with a Down's Syndrome child is not matched up point for point by a positive account of a parent who aborted their Down's Syndrome baby and then went on to have a baby that saved the world? Why? It's not like folks who get back scary amnio results don't have enough information about what they might be missing out on, because we are pretty much bombarded with that image of happy, healthy "normal" children in the regular media and Saturday morning cartoon commercials. It would seem instead that because so few fetuses diagnosed with Down's Syndrome are actually carried to term, it is the perspective from the link plinth posted that is underrepresented in our media. But I guess I'm just not getting your point.
posted by onlyconnect at 11:15 AM on October 2, 2008
Why? I start with the premise that all parents are equally heroic. Posts like this celebrate parents who heroically raise children who are impaired. Why single them out? Aren't they just like any other parents? They may have different challenges in some cases, but not fewer challenges, or harder ones. It is unlikely, for instance, that those parents would be concerned about their child enlisting. So. All parents are equally heroic.
When some parents are singled out as heroic more than others, it suggests that there is an underlying morality that drives the conversation, a morality that is sneaky in that it isn't obvious. Sneaky makes me nervous. Also, the use of the word "bombarded" makes me nervous. That sounds like a perception issue, rather than a "media agenda" issue.
These things add up to "bad post". A bad post is when, rather than representing something purely interesting, the post represents an interest. Interests make me nervous.
posted by ewkpates at 11:54 AM on October 2, 2008
When some parents are singled out as heroic more than others, it suggests that there is an underlying morality that drives the conversation, a morality that is sneaky in that it isn't obvious. Sneaky makes me nervous. Also, the use of the word "bombarded" makes me nervous. That sounds like a perception issue, rather than a "media agenda" issue.
These things add up to "bad post". A bad post is when, rather than representing something purely interesting, the post represents an interest. Interests make me nervous.
posted by ewkpates at 11:54 AM on October 2, 2008
Aren't they just like any other parents?Yes. And just like every other parent, they get to talk about their parenting experiences without discussing the "other side of the issue" or raising the possibility that they would have been better off having aborted their child.
posted by craichead at 12:20 PM on October 2, 2008 [2 favorites]
Posts like this celebrate parents who heroically raise children who are impaired. Why single them out? Aren't they just like any other parents?
I disagree with your premise that this parent is being held up as heroic to the exclusion of parents with typical children. He is shedding light on a unique parenting experience most people would be unfamiliar with, not proclaiming himself a saint. What's the harm in that beyond gaining insight into a subject you may have been previously unfamiliar with?
posted by The Gooch at 12:30 PM on October 2, 2008
I disagree with your premise that this parent is being held up as heroic to the exclusion of parents with typical children. He is shedding light on a unique parenting experience most people would be unfamiliar with, not proclaiming himself a saint. What's the harm in that beyond gaining insight into a subject you may have been previously unfamiliar with?
posted by The Gooch at 12:30 PM on October 2, 2008
And just like every other parent, they get to talk about their parenting experiences without discussing the "other side of the issue" or raising the possibility that they would have been better off having aborted their child.
Once you become a parent it is too late to debate the possible merits of abortion. At that point it's called infanticide and regardless of how much you may want to do it at 3:00 AM while that little squirming mass is screaming in your ear, it's just not very socially acceptable anymore. So, you don't really have the luxury any more of wondering if you'd have been better off having aborted the thing. You are now a parent no matter how shitty that job can be some times. Conversely, those that have had abortions can't really dwell on how rewarding their relationship with their child has been either now can they?
posted by Pollomacho at 12:53 PM on October 2, 2008
Once you become a parent it is too late to debate the possible merits of abortion. At that point it's called infanticide and regardless of how much you may want to do it at 3:00 AM while that little squirming mass is screaming in your ear, it's just not very socially acceptable anymore. So, you don't really have the luxury any more of wondering if you'd have been better off having aborted the thing. You are now a parent no matter how shitty that job can be some times. Conversely, those that have had abortions can't really dwell on how rewarding their relationship with their child has been either now can they?
posted by Pollomacho at 12:53 PM on October 2, 2008
Whenever we don't hear the other side - that's when I get nervous. . . . Mr. Rogers sounded as if he'd had a mystical experience with this child as opposed to his others, and that made me nervous too. . . . Sneaky makes me nervous. Also, the use of the word "bombarded" makes me nervous. . . . Interests make me nervous. . . .
I kid you not (I think I have noted it on this site before), I was voted "most nervous" graduating senior in my high school class poll.** Until now, I've held that title with dignity and honor, but I find I must now surrender it to you in recognition that your frayed and hyperexciteable nerves are even more agitated than my own. Go forth and worry!
**We also had other creative categories, such as "best kneecaps," but alas that honor was not to be mine.
posted by onlyconnect at 1:07 PM on October 2, 2008
I kid you not (I think I have noted it on this site before), I was voted "most nervous" graduating senior in my high school class poll.** Until now, I've held that title with dignity and honor, but I find I must now surrender it to you in recognition that your frayed and hyperexciteable nerves are even more agitated than my own. Go forth and worry!
**We also had other creative categories, such as "best kneecaps," but alas that honor was not to be mine.
posted by onlyconnect at 1:07 PM on October 2, 2008
You're missing my point, pollomacho. What I'm saying is that ewkpates is being disingenuous. Ewkpates isn't treating this parent like any other parent, because most fathers would be allowed to discuss their parenting experiences without anyone demanding that they discuss "the other side of the story." If my dad posted an essay about how he'd learned and grown from being the father of a daughter, nobody would demand an essay from a parent who got back the results of the amnio, realized his child was going to be a girl, and decided not to have that child. Such a demand would be considered perverse. There is a value judgment built into ewkpates demand to hear "the other side." Gregg Rogers is not the one treating his experience as special and different from other parent's. Ewkpates is.
posted by craichead at 1:19 PM on October 2, 2008 [4 favorites]
posted by craichead at 1:19 PM on October 2, 2008 [4 favorites]
1. If I am being disingenuous, then it is with regard to nervousness. While errors, fallacies and deception make me nervous, it would be more proper to say that the experience does not render me nervous. I am aware of them the way one might be aware of something that makes them nervous, but I am not possessed of nervousness...
2. I don't know what other parents might not be allowed to do. I am concerned that we are celebrating one kind of child raising over another. Posts about parents of sons or daughters are common, people are comfortable with them. Posts about people who chose not to be parents, less so. People who link the success of one child to the child they chose not to have, well, there's a uncomfortable uncommon area.
3. Every perspective has value built into it. I'm not arguing that. I'm arguing that the value we build into the discussion of parenting should not suggest that any parent's challenges are different from any other. Mr. Rogers was more scared of having this particular kind of child because that's who he is. Not because it is inherently more scary. Facing his fear made him a better person. Not facing this fear.
4. "This I believe" as a series makes me nervous. I'm not sure what purpose it serves. It would be like having a program where people talk about their favorite pair of pants, and why they are so wonderful. We already spend our time celebrating preference. It would be nice to spend more time celebrating virtue. For instance, and you might not think so, but "How I make others happier" would be a better show.
posted by ewkpates at 4:20 AM on October 3, 2008
2. I don't know what other parents might not be allowed to do. I am concerned that we are celebrating one kind of child raising over another. Posts about parents of sons or daughters are common, people are comfortable with them. Posts about people who chose not to be parents, less so. People who link the success of one child to the child they chose not to have, well, there's a uncomfortable uncommon area.
3. Every perspective has value built into it. I'm not arguing that. I'm arguing that the value we build into the discussion of parenting should not suggest that any parent's challenges are different from any other. Mr. Rogers was more scared of having this particular kind of child because that's who he is. Not because it is inherently more scary. Facing his fear made him a better person. Not facing this fear.
4. "This I believe" as a series makes me nervous. I'm not sure what purpose it serves. It would be like having a program where people talk about their favorite pair of pants, and why they are so wonderful. We already spend our time celebrating preference. It would be nice to spend more time celebrating virtue. For instance, and you might not think so, but "How I make others happier" would be a better show.
posted by ewkpates at 4:20 AM on October 3, 2008
If my dad posted an essay about how he'd learned and grown from being the father of a daughter, nobody would demand an essay from a parent who got back the results of the amnio, realized his child was going to be a girl, and decided not to have that child. Such a demand would be considered perverse.
This dad did provide an essay about his difficult struggle, why does he get a pass, simply because his daughter has a congenital defect that will make her life somewhat more difficult? Is it becaus his struggle is somewhat special and different? Where is the line between what is acceptable and what perverse?
posted by Pollomacho at 4:44 AM on October 3, 2008
This dad did provide an essay about his difficult struggle, why does he get a pass, simply because his daughter has a congenital defect that will make her life somewhat more difficult? Is it becaus his struggle is somewhat special and different? Where is the line between what is acceptable and what perverse?
posted by Pollomacho at 4:44 AM on October 3, 2008
I heard this story on NPR and I was moved as well. But my take on it is somewhat different than the other opinions expressed so far -- I interpreted his feelings about his child as taking on this 'mystical' sense (for lack of a better word) because his expectations and feelings about this child before she was born were so different than what happened afterwards. Experiences where one's expectations are turned upside down by the reality of a situation can be quite profound - I think this is particularly true when the expectations are negative followed by a reality that is so surprisingly positive. I was less struck by the surface dimensions of his story (the difficulty of having a down syndrome child and then rising to the challenge) and more moved by his experience of finding reality to be so very different from what he expected and finding delight in that experience.
posted by bluesky43 at 5:49 AM on October 3, 2008
posted by bluesky43 at 5:49 AM on October 3, 2008
This dad did provide an essay about his difficult struggle, why does he get a pass, simply because his daughter has a congenital defect that will make her life somewhat more difficult? Is it becaus his struggle is somewhat special and different?I don't understand why you think he's suggesting his struggle is special or different. He published that essay as part of a regular series in which people talk about their life experiences and identify something they learned from those experiences. Yvette Doss did not present the perspective of people who think that philosophy is irrelevant to working-class people of color. Troy Chapman, who is in prison for murder, did not discuss the perspective of people who think that he should have been executed and therefore never got a chance to befriend a scruffy orange cat.
Are you saying there is no value in the personal essay format? Should "This I Believe" be pulled from the air because none of the essays are balanced? Or is there something uniquely unsettling to you about this particular personal essay?
posted by craichead at 6:30 AM on October 3, 2008
Pull This I Believe and this thread. Replace them with something that isn't "what I found challenging" filter. I suggest, "How I make others Happy" filter. What you find challenging is just an invitation for people to wax about what they like about themselves... not useful. What they are able to inspire in others has both more reality to it, and more utility.
posted by ewkpates at 10:08 AM on October 3, 2008
posted by ewkpates at 10:08 AM on October 3, 2008
Are you saying there is no value in the personal essay format? Should "This I Believe" be pulled from the air because none of the essays are balanced? Or is there something uniquely unsettling to you about this particular personal essay?
I didn't say anything about pulling anything. I'm not sure where you got that.
I don't understand why you think he's suggesting his struggle is special or different.
You said that a father who discussed aborting a child becase of its sex would be perverse. Why is it not perverse for this guy to discuss the same thing? You apparently feel that his situation is special enough to warrant a pass. I am not the one who argues that this man's story is special or different.
posted by Pollomacho at 1:21 PM on October 3, 2008
I didn't say anything about pulling anything. I'm not sure where you got that.
I don't understand why you think he's suggesting his struggle is special or different.
You said that a father who discussed aborting a child becase of its sex would be perverse. Why is it not perverse for this guy to discuss the same thing? You apparently feel that his situation is special enough to warrant a pass. I am not the one who argues that this man's story is special or different.
posted by Pollomacho at 1:21 PM on October 3, 2008
Seriously, you two? This is how you want to spend your time? Some dad writes about his positive experience parenting a special needs child, when he expected the opposite, and your reactions are "this medium is a dumb format with non-optimal utility" and "this dude is perverse"? Okay, I guess. In the future you might also want to stay out of cheerful threads about cat scanning or heartwarming baby rescues made by firemen. In any case, though, yes, I will get off your lawn now, Grumpy McGrumpersons. Have a nice day.
posted by onlyconnect at 1:37 PM on October 3, 2008
posted by onlyconnect at 1:37 PM on October 3, 2008
You said that a father who discussed aborting a child becase of its sex would be perverseI certainly did not say that. And if you think I did, you need to work on your reading comprehension. I said that had a father published a personal essay about what he learned from raising a daughter, and had someone demanded that we also hear the "other side" about a father who decided to abort a fetus upon finding out that it was female, we would consider that demand perverse. Similarly, I think it's kind of messed up that people can't just take this guy's essay as an interesting and valid take on his own experience.
posted by craichead at 2:01 PM on October 3, 2008
How do we tell the difference between "an uplifting story" and "values propaganda"? They can look pretty similar. Maybe you aren't worried about that. Its easy not to worry when you share the values.
posted by ewkpates at 1:23 AM on October 6, 2008
posted by ewkpates at 1:23 AM on October 6, 2008
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Oooh, I like her.
posted by louche mustachio at 7:12 AM on October 2, 2008 [1 favorite]