I have a question down another avenue entirely: what on earth possessed these people to agree to have their story shown on TV??
Whenever I see “Emergency Room” or some similar show, I wonder in horror at the people who sign off to have brother Ed’s fatal car accident, grandma’s stroke or li’l Billy’s arrow-through-the-head shown on TV for other peoples’ amusement.
Would any of you like to appear on those shows, or have your families do so, or am I the only one so privacy-conscious?
whiterabbit said:
This reminds me of an episode of Dr. Katz where his son says, “Every time my cat leaves the house, he’s getting a thermometer up his ass…he sees me leave the house every day.”
Well, my daughter has Down Syndrome. And I gotta say that there is no way in hell that I would agree to cosmetic surgery. Particularly as young as three. I also realize that it’s simply my opinion, and that others may not feel the same way.
Now:
FarTreker:
Dunno where you went to society school, but from what I can tell, the rapists, molesters and serial killers are always described as, “Quiet, kinda kept to himself.” Or, “A real nice fella. Never woulda guessed that he could do such a thing.”
even sven:
Italics mine.
These people are nobody that I might want to know. I don’t give a damn how altruistic they attempt to sound, it seems to me that they simply don’t want a child who looks as though he has Down Syndrome.
Precisely. I would give my life if it could mean that my daughter wouldn’t have Down Syndrome. So I freely admit my bias, but to submit a three year old to surgery just so that he will look more like what you consider normal is terrible. Particularly if it is only cosmetic. I’ve not, however, seen the program in question.
Ptahlis:
Well, you’d probably deal with it and get on with your life. I lived with the same fear, and here I am. Pissy and disagreeable as I ever was.
And, Eve? I, for one, would no sooner allow a film crew into a surgical procedure than I would eat glass.
Waste
Flick Lives!
I hope you don’t mind me asking you these questions. I thought as the parent of a Down Syndrome child, you would be in a better postition than most to know.
I realize that there is a range of intelligence levels in Down Syndrome children just as there is in the rest of the population. Do you think that many of these kids while they are elementary school age would understand teasing and cruelties from other children because they look different? If so, does it have the same sort of effect that teasing someone in a higher intelligence range (make them sad, shy, angry. . . etc)? Especially in this time of mainstreaming, it is something I would worry about, because, as FarTreker pointed out, kids can be cruel.
I have heard that many Down Syndrome kids have esophagal problems and heart problems that sometimes require surgery. Have you ever heard of a team of doctors doing different surgeries at the same time? My (possibly rather strange) idea would be, if a child has to have a different type of surgery, maybe this cosmetic surgery could be done at the same time, and save the child the extra trauma (because there is no doubt about the surgery being traumatic). I would be very hesitant to subject a child to a cosmetic surgery ordinarily, but maybe it has been done while some of the other problems were repaired(?).
It could be that the surgery is not in the best interest of the child. Is it a stereotype that Down Syndrome children are extremely good natured, happy people who wouldn’t be bothered by ridicule from other children?
And finally, a rather off the subject question about the name. When I was in college, I was told the proper name was Down’s Syndrome, and when my daughter went to college, she was told Down Syndrome. Which is correct?
I hope you don’t mind me asking these questions, I hope I haven’t said anything offensive to you. Thanks for wading through this.
Spider Woman:
Yeah, I would. My daughter is 8, and she is pretty high functioning, and I’ve no doubt whatsoever that the occasional snubs that she receives sting. As far as whether or not they sting in the same way, I really don’t know. And she doesn’t say. Although, to be fair, she goes to a school that her mother teaches at, so she probably doesn’t get nearly the crap that a child might receive who didn’t have a parent down the hall.
Well, yes, many kids do. My daughter had open heart surgery when she was 18 months old. Basically, they stop your heart from beating while they hook you up to a heart and lung machine that’ll take over while they do that hoodoo that they do so well. The thought of doctors doing anything in addition to what they did turns my stomach. I suppose that it might be a possibility, but again, I would not wish to know the parent who would do that.
Good natured? Happy? Obviously you’ve not met The Principessa. Again, kids with Down Syndrome run the gamut from high functioning to low. Some of them probably wouldn’t realize that they were being made fun of. Hell, some of them would probably be like the gentleman spoken of above, just blithely going on with their lives, without a single thought as to whether or not they were acting in a strange way.
I use Down, as do all of the other people that I have ever encountered who deal with these kids. It used to be known as Down’s, but (IIRC) since Dr Down didn’t have the syndrome, then it wouldn’t be right to use a possessive 's. Yeah, yeah, I know, it can also imply ownership, but he didn’t own it either. Hell, let’s refer to it as “DS”, that way there’s no confusion. And I take comfort that at least you weren’t taught to use the ‘M’ word.
Waste
Flick Lives!
GLWasteful:
I hope what I said did earlier about my reaction to Down Syndrome (I at least now know the proper terminology) did not offend you. I was just trying to be as nakedly honest about my reactions as I could be, and it’s not exactly a feeling I am proud of.
My cousin Carl was what you would call low-functioning. He had some problems with controlling his bodily functions, and was prone to unpredictable violent temper tantrums until they got him on the proper medications. And he was strong. I used to dread seeing him, and wanted nothing more than for him to leave whenever he would come over to our house. I never knew what he would do next and I still get the same feeling when I am around another person with DS, even though I know intellectually that people with DS are as varied in temperament as anyone else.
Ptahlis: Not to worry. As I said, I lived in fear of that very thing, too. It’s just that it happened to me. And I realize full well that my daughter is definitely on the high-functioning end of the scale. Although, if she weren’t, I like to think that I would still deal with it as well as I seem to now. I did not see the program in question, so please take anything that I say with at least a grain of salt, but the parents who had this done seemed to me to be horrible people. Again, just from what was said. I might feel differently if I had seen it, but I kinda hope not. And as far as feeling proud? Hell, we all do things that we’re not very proud of. At least you’re honest about it.
As far as your cousin, well, I would be lying if I said that simple TLC would bring either of you around. I have encountered mentally retarded people who frightened me. They were, as you pointed out, big and strong, and they always made me think of that Dave Barry line about “the strength of a Sherman tank, piloted by the intelligence of a labrador retriever,” or words to that effect. If it’s any consolation, I have spoken to more than a few special-ed techers who have experienced the same thing. My wife comes immediately to mind.
Testify, brother! My daughter can be the sweetest kid you’ve ever encountered, and she can be hell on wheels. She refers to me as “the old man”, and “Greg” (which drives my mother-in-law batty) and loves The Simpsons and Jimmy Buffett. She also has an annoying belief that simply because she says so, that every creature must bow to her whim. Drives the dog crazy. Fortunately, we have a cat who, inexplicably, allows her to carry him around. She can also be stubborn as all hell, and has what my mom always referred to as “selective hearing”. You know, just like any other kid.
Damn, it’s starting to get a little treacly in here. I need to sign off before David or Gaudere come along to break up this MPSIMS moment.
Waste
Flick Lives!
Since the door has been opened to general questions about DS, I have one.
I think I understand the terms “low-function” and “high-function;” they refer to the relative intelligence of various people with DS.
My question is, what are the highest documented ranges of intelligence for “high-functioning” DS people? I’ve read that some have “attended college classes,” although I’ve never heard of any who have earned degrees. Have they?
There was, of course, that DS actor on the family TV show (was it called “Life Goes On?”). On the show and in real-life interviews, he seemed to me not to be “retarded” (pardon the term) at all…just a little slow in his reactions. Is this a common level in this day and age? Can most DS children, with proper and careful teaching methods, catch most of the way up to their peers? Or are the actor and the college-attendees rare exceptions?
Five:
Crap! I’m living in fear of a thread that becomes, “Ask the guy w/ the DS kid”. Actually, I’m not an expert, I just happen to have some first-hand knowledge about having a child with DS. I know that there are some kids who do well as far as learning and socialization goes. Whether or not any have gotten degrees, though, I’m afraid that I just don’t know.
His name is Chris Burke. And yeah, he’s what I would consider pretty high functioning. I read his book, the name of which escapes me right now, and he seemed like a nice enough kid. A little heavy on the syrup, but most books of that genre are. There are also a couple of young men, Mitchell Levitz and Jason Kingsley, who have gotten a goodly amount of attention due to a book that they wrote, Count Us In, and they’ve done quite well in life. However, there are also a lot of kids who don’t come anywhere near the accomplishments of these fellows. I certainly hope that my daughter can achieve the same things, but this damned pragmatism keeps intruding.
I don’t know with any degree of certainty, but imagine that the majority of people with DS wind up working at the local Burger King. And, I might add, enjoy the hell out of their jobs. Conversely, there are people like Ptahlis’ cousin who don’t do as well, and wind up terrorizing their relatives. In short, they cover a wide swath of developmental acuity, and where your kid winds up is a crapshoot.
Waste
Flick Lives!
My sister married a man with a son who is 22 and has Down’s Syndrome. Justin has the mentality of a 5-6 year old. He is friendly, sweet and outgoing. We just got back from a 4-day Carnival cruise with them and 6 other family members. Believe me, my 46 year old brother and 35 year old sister were a hell of a lot more embarassing and disruptive than Justin was. Although he looks “obviously retarded” no one seemed to pay much attention to his looks. His behavior was unremarkable. The others though, were loud, drunk and disgusting.
My only comment is Justin doesn’t realize he is any different than everybody else. He has 2 sisters and 1 brother, and was raised pretty much the same as the others. All were taught to listen to your parents, do your chores, use good manners, etc.
If the child in the OP feels “different” it’s the parent’s fault, not the child’s.
SpiderWoman, in answer to one question, I believe that one possible non-cosmetic (but facial-related) surgery for DS kids which is sometimes done is surgery on their tongues. One common characteristic of DS is that their mouths are disproportionately small for their tongues, and there is some surgery that can help alleviate this problem, improving speech. I suppose that would be a natural time for other elective surgery on the face to take place, which is what you’d asked about. HOWEVER, I have heard this surgery (on the tongue) is quite painful. I’m not sure I’d choose it in the first place.
I can understand how an older DS might decide, with his parent’s blessing or encouragement, to undergo cosmetic surgery. At least he would know WHY he was hurting, afterwards. That element is lacking in a child so young they don’t understand, or cannot choose.
I did not see this show, but the way this family has been described here, it’s hard to feel comfortable with their choice. However, if you’d indulge me in a little conjecture, if these parents are sensitive about appearances, it might very well be that without such surgery they’d avoid taking their son out in public, might act ashamed of him, etc. That could seriously impact his quality of life. So strangers’ reactions to him notwithstanding, if it makes his PARENTS handle it better, maybe this was the right thing for them to do.
CrankyAsAnOldMan:
Fair and valid points, I suppose. However, if they would have been ashamed of him without the surgery, how are they going to deal with the myriad things that are considered socially unacceptable that a youngster with DS might do? As a f’rinstance: my daughter seems to be fascinated with lifting her skirt above her head. It was damned cute when she was three, but she’s almost nine, and it still sometimes happens. Another: she is fascinated with babies, and will not miss a chance to point one out to us. She likes to get right into their faces and converse. This has scared the crap out of some parents. A lot of them think that it’s sweet, some of the ones that are frightened realize fairly quickly that she means no harm, and some of them act as if DS is contagious, and snatch their babies (some of which, to be fair, are really toddlers. Hannah thinks that anyone shorter than she is should be considered a baby) away. I usually steal a line from Whoopi Goldberg with the latter and tell them that they won’t immeduately get DS from my daughter. Instead, it should take a week or two before they start showing signs. Or what if their son has violent tantrums, like Ptahlis’ cousin? It seems to me as if these parents want to customize their son. Except that they can’t eliminate the mental retardation that is inherent with DS, so they are doing the next best thing, and trying to eliminate the physical characteristics.
Waste
Flick Lives!
I haven’t seen the show in question, but I just wanted to point out that on these “exposes” the producers can really manipulate the viewers’ perceptions; if you have 50-100 hours of interview (and from the sopund of it they interviewed the parents throughout this process, so they could easily have had that much) and you get to select 40 minutes worth of comentary from all those hours in 30 second bits, you can make the most reasonable people in the world look like any kind of fanatic you want.
Yeah, Manda JO, I know that. And as I said, I’ve not seen the program either. But it would take an awful lot of finessing to get them saying that they were disappointed that the results weren’t instantaneous. Is this thing available on video? Anyone?
Also, the producers may not have necessarily wanted to make these folk look bad. There are an awful lot of people out there who would probably agree with them.
Waste
Flick Lives!
**
Heck GLW, my six year old still hasn’t grown a modesty gland yet, and she doesn’t have Down Syndrome. Carrie + skirt = free panty show is an equation that never seems to be false.
Yeah, well, we manage to sidestep the issue by focusing strongly on jeans, pants, and other, more butch modes of dress. However, there are some damned cute sundresses out there, and occasionally succumbing to adorability, well, it’s gonna happen. Just like most everything else, we deal with it when it happens.
Heh. . .“modesty gland”
Waste
Flick Lives!