First, to understand what I'm talking about, read this article:
http://www.dailymail.co.uk/health/article-2368276/Scientists-switch-extra-chromosome-causes-Downs-Syndrome.html
Here is one quote from the article (but, you should really click on the link and read the whole thing):
"Gene therapy has already been used to treat medical problems that result from the presence of one defective gene, but this is the first time that silencing the impact of a whole chromosome has become a possibility."
The news in this article has been shared and re-shared by a good number of parents of children with PWS, on Facebook. It is definitely exciting news; while the possibilities of gene therapy have been researched for some time, this particular development is one that really resonates in the PWS community. There is a variety of PWS with which this possibility of turning off - or even turning on - a chromosome or parts of it is especially important: those children who have PWS by uniparental disomy, meaning they have two X (maternal) chromosomes in the 15th pair.
I can't possibly get deeply into the genetics of this - I'm relatively smart but I'm not a geneticist. What struck me as I read this article wasn't the miraculous science of it all. Rather, it was the moral and ethical ramifications of this development that would be faced, I think, down the road.
Does this ability to turn off that extra chromosome - would that mean that when in-utero testing is done, and the tests come back as definitely positive for Down's syndrome, that then the parent(s) would be able to make a choice about their baby? And by choice I mean, would they then be able to choose to still have the baby, but it would be a baby whose genes had been genetically modified so that they no longer had Down's Syndrome?
If this plan of action became available - what would society feel about parents who chose NOT to have their unborn child's genes genetically modified, and they thus chose to go ahead and give birth to a baby with Down's Syndrome? If humans develop the ability to fiddle with who the next generations fundamentally are - their genetic makeup - where does that stop?
I would say that pretty much all the parents/caregivers of individuals with PWS would be in favor of their child/family member not having this frustrating, complex syndrome. I'm just not sure if we all really want to condone "genetically modified humans". I do hope that research can silence the hyperphagia for my daughter and all those with PWS...I also think, though, that being able to orchestrate a syndrome-free or disease-free human may have some troubling ramifications.
Later,
Jen
Sunday, July 21, 2013
Sunday, July 14, 2013
Summer
Summer is a very "mixed bag", I think, for parents of special-needs kids.
In one sense, it is definitely a break, a much-needed break, from the school environment and all that that environment means, for parents of children with special needs. Since she is at home, I know obviously where she is and I am assured that she is not around any unnecessary food and/or people/kids who will not treat her appropriately. I still worry about whether she is losing some of what she had been learning, in math skills especially, but there hasn't been too much regression in skills over summers so far, so I'm not too concerned.
However, I know Sophie misses the constant activity and the routine of the school day, and she also misses being around other kids. So for her, summer isn't always a great thing.
Summer is a time of year that seems to make it especially noticeable how challenging it is for children-with-special needs to have true "friends". By "friends" I guess I am thinking back to my own childhood, and how I and my neighborhood friends used to spend our days - roaming the neighborhood, going in and out of each others' houses, going to the pool, playing hide-and-seek. While I do understand that times have changed, and things are not the same as they were 30 years ago, still I clearly see that for Sophie, this ease of having friends is not immediately possible.
For a "typical" child to have a friendship with Sophie - one which looks anything like that between two "typical" children - they would be required to meet her in the middle, somewhere between their cognitive level, and hers. Sophie is 9, but has fun doing things that I suspect are more enjoyable for kids a year-or-two-younger. So while I would dearly love for my wonderful, funny, sweet daughter to have true friends, I would be surprised at this point to come upon any "typical" child who knows how - or has been taught how - to adjust their play skills so that both they and Sophie have fun. While I do notice and it breaks my heart, I sincerely hope that Sophie does not notice the neighborhood kids playing, choosing to play without her. If she does notice, I hope and pray that she doesn't understand it enough that it hurts her. I can't force kids to play with her, and I am too wary of kids being mean to her (which, again, I notice even if she doesn't) to want to push the issue.
School districts these days, for the most part, are instructed to practice the concept of "inclusion", where children with a diagnosis are still able to spend part of their day in the classroom with their same-age "typical" peers. And for the most part, this is a good thing. Unfortunately, though, there is still a piece missing in the inclusion effort, and that is, teaching "typical" children how to meet their special-needs peers halfway, in terms of spending enjoyable time together. Sophie does not often have kids to play with, at recess time at school. I have images of her standing by herself while outside. Micro-managing her entire school day, and/or forcing other kids to play with her by demanding the school do something, seems to be the solutions that jump to mind. Not the greatest solutions, and she does seem to have days where she plays with kids, so....
Here is a "for-instance", of how one child can learn how to interact with a special-needs child: Sophie spends part of every school day in the Intervention Room, which is where special-needs kids spend time learning the subjects which they need taught at a pace different from their mainstream peers. In Sophie's room there is a student who in non-verbal and is in a wheelchair. "Typical" children would take one look at her and assume that there is no way for them to interact with her in a positive, "play" manner - but as I learned, they would be wrong. Sophie is high-functioning enough to be able to help out, in the Intervention Room, in small ways. One of the ways she helps with this particular student is by pushing her around the room, in her wheelchair, when the student becomes upset. It seems that this student prefers movement, sound, action around her - it is enjoyable for her and without it, she often starts to cry. Is this something that "typical" students could help with? Yes, in a supervised way of course. It is a way that they could interact, positively, with a special-needs peer.
Ah summer....supposed to be such a carefree time filled with sunshine and ice-cream cones....doesn't always work that way.
Later,
Jen
In one sense, it is definitely a break, a much-needed break, from the school environment and all that that environment means, for parents of children with special needs. Since she is at home, I know obviously where she is and I am assured that she is not around any unnecessary food and/or people/kids who will not treat her appropriately. I still worry about whether she is losing some of what she had been learning, in math skills especially, but there hasn't been too much regression in skills over summers so far, so I'm not too concerned.
However, I know Sophie misses the constant activity and the routine of the school day, and she also misses being around other kids. So for her, summer isn't always a great thing.
Summer is a time of year that seems to make it especially noticeable how challenging it is for children-with-special needs to have true "friends". By "friends" I guess I am thinking back to my own childhood, and how I and my neighborhood friends used to spend our days - roaming the neighborhood, going in and out of each others' houses, going to the pool, playing hide-and-seek. While I do understand that times have changed, and things are not the same as they were 30 years ago, still I clearly see that for Sophie, this ease of having friends is not immediately possible.
For a "typical" child to have a friendship with Sophie - one which looks anything like that between two "typical" children - they would be required to meet her in the middle, somewhere between their cognitive level, and hers. Sophie is 9, but has fun doing things that I suspect are more enjoyable for kids a year-or-two-younger. So while I would dearly love for my wonderful, funny, sweet daughter to have true friends, I would be surprised at this point to come upon any "typical" child who knows how - or has been taught how - to adjust their play skills so that both they and Sophie have fun. While I do notice and it breaks my heart, I sincerely hope that Sophie does not notice the neighborhood kids playing, choosing to play without her. If she does notice, I hope and pray that she doesn't understand it enough that it hurts her. I can't force kids to play with her, and I am too wary of kids being mean to her (which, again, I notice even if she doesn't) to want to push the issue.
School districts these days, for the most part, are instructed to practice the concept of "inclusion", where children with a diagnosis are still able to spend part of their day in the classroom with their same-age "typical" peers. And for the most part, this is a good thing. Unfortunately, though, there is still a piece missing in the inclusion effort, and that is, teaching "typical" children how to meet their special-needs peers halfway, in terms of spending enjoyable time together. Sophie does not often have kids to play with, at recess time at school. I have images of her standing by herself while outside. Micro-managing her entire school day, and/or forcing other kids to play with her by demanding the school do something, seems to be the solutions that jump to mind. Not the greatest solutions, and she does seem to have days where she plays with kids, so....
Here is a "for-instance", of how one child can learn how to interact with a special-needs child: Sophie spends part of every school day in the Intervention Room, which is where special-needs kids spend time learning the subjects which they need taught at a pace different from their mainstream peers. In Sophie's room there is a student who in non-verbal and is in a wheelchair. "Typical" children would take one look at her and assume that there is no way for them to interact with her in a positive, "play" manner - but as I learned, they would be wrong. Sophie is high-functioning enough to be able to help out, in the Intervention Room, in small ways. One of the ways she helps with this particular student is by pushing her around the room, in her wheelchair, when the student becomes upset. It seems that this student prefers movement, sound, action around her - it is enjoyable for her and without it, she often starts to cry. Is this something that "typical" students could help with? Yes, in a supervised way of course. It is a way that they could interact, positively, with a special-needs peer.
Ah summer....supposed to be such a carefree time filled with sunshine and ice-cream cones....doesn't always work that way.
Later,
Jen
Friday, October 26, 2012
The "food life" of the PWS* parent
[*PWS = Prader-Willi Syndrome]
The topic sometimes comes up, among PWS parents, of "how have your/your family's eating habits changed since your child was diagnosed with PWS?". Because Prader-Willi Syndrome has almost everything to do with the scheduled consumption of food by one's child, and the calorie-count of that food, it is often a standard consequence that the eating/food preparation habits of everyone in the household are affected, both for better and for worse. Some parents are able to change their life 100% with the entrance of the PWS diagnosis, and they devote all of their time to becoming nutrition and supplement experts. Most parents, though, are doing the best they can, keeping their child-with-PWS as healthy and slim as they can while muddling through as far as feeding the rest of the family. "Food" and its preparation becomes a source of questioning and recalculating of eating habits that have been in practice for many years before the entrance of the PWS diagnosis.
Take me, for example.
Like a good number of PWS parents, I sneak snacks. I eat stuff I shouldn't, when I know Sophie won't see me. Eating in the late hours of the day when she is definitely in bed is now a bad habit of mine. I sometimes eat when I'm not at all hungry, because if I don't, I know that I'll become hungry in a moment when Sophie should not be eating, and to eat in front of her at that time would be cruel.
Then there is the "recipe collection". I have probably 100 back issues of food-based magazines; "Cooking Light", "Everyday Food", to name a few. There are several stacks of cookbooks on various shelves around the house. I have a binder bursting with several hundred recipes clipped from magazines and printed off from the internet.
But...do I actually "cook", anymore? As in, follow a recipe, make something "from scratch", spend any prolonged time in the kitchen?
Not really, for various PWS-related reasons.
Any extra time spent in the kitchen, when Sophie is home, in problematic. She likes to hang out in the kitchen and sometimes wants to help me, even if what I'm making is really simple. So then I worry, should she even be IN the kitchen at all? If she's watching me warm this up or make that, will she at some point sneak into the kitchen and try to make it herself (because I am ALWAYS telling her that this or that food item, if eaten without cooking it first, will make her very very sick - so as to somehow deter her from eating raw food product. Except then, will she just use her clever brain, take the food anyway, and try to cook it herself??). There is also the concern that, if something is cooking for a few hours and sending tantalizing smells all through the house, does that bother Sophie and cause her added stress? Do I open all the windows to decrease the smells? Should I just not cook or bake much at all?
And then, with all these cookbooks and food magazines and clipped recipes, of course it is now mandatory to consider the calorie-count-per-serving for whatever recipe. Sophie is eight years old now, and with the passing years I have kind of lost my desire to make much of anything - there is no longer any justification for making a recipe "just because it tastes or looks good" or "just because it was a comfort food when I was a kid", if one serving equals 200, 300, 400+ calories. Certainly Sophie's portion can be adjusted so that she can at least have some, and the rest of her meal would be suitably lightened up. That isn't hard to do, and I have certainly done that on occasions when it has been necessary. It gets tiring and depressing, though, to approach every recipe with that precaution in mind. Really, the more recipes I read, I start to question why any recipe, for any main dish, side dish, dessert, whatever, needs to be made with full-fat or full-calorie ingredients. If the population of the U.S. is in the midst of an obesity epidemic, then why does any company or chef or food magazine or cookbook author produce recipes with seemingly no regard for the calorie-count-per-serving? I have looked at recipes where the count is 600 calories-per-serving, and the serving size is one cup. Now, obviously I am not going to make that particular recipe, as that is not healthy for anyone in my house let alone Sophie, plus her portion size for such a recipe would be so minute that it wouldn't even be worth it to put any on her plate. But even though I know right away that I won't be making that recipe, I just have to wonder why anyone would make that recipe. Why put your health at risk for the sake of that plateful of "whatever"? Is it worth it? Why spend the money on the ingredients to make something which, even as it tastes good, is increasing your weight or your risk of heart disease? Why....
And on, and on....all these questions from looking at just one recipe.
Looking at food magazines and cookbooks etc etc is fraught with conflict, questions, self-doubt and second-guessing, anymore. I know of families where the entire family has gone vegetarian/vegan/gluten-free/sugar-free/carb-free/all-or-some-of-the-above, as a result of the PWS diagnosis. One family switched to juiced-everything, and says that not only has this helped their child-with-PWS, the whole family feels so much healthier. It seems inevitable that with the PWS diagnosis, simply walking into one's kitchen or eating anything at all, is an action which is so much less clear-cut than for the "typical" person or family. Food consumption becomes a guilty pleasure, or a hoped-for cure-all for your child's diagnosis, or it's just a every-two-hour-chore with no joy in it at all. I watch cooking shows sometimes and drool, not just because of what is being cooked but because of the person's freedom to cook whatever, without having to agonize over the calories and ingredients of the recipe. The people on the cooking show actually enjoy what they are doing! I'd like to get back to that, somehow. I'd like to be able to cook and bake in my kitchen without feeling like I have to do it in the middle of the night or only when Sophie is at school, so as not to cause her any extra distress.
Well, off to figure out what to make for dinner.... :-).
Later,
Jen
The topic sometimes comes up, among PWS parents, of "how have your/your family's eating habits changed since your child was diagnosed with PWS?". Because Prader-Willi Syndrome has almost everything to do with the scheduled consumption of food by one's child, and the calorie-count of that food, it is often a standard consequence that the eating/food preparation habits of everyone in the household are affected, both for better and for worse. Some parents are able to change their life 100% with the entrance of the PWS diagnosis, and they devote all of their time to becoming nutrition and supplement experts. Most parents, though, are doing the best they can, keeping their child-with-PWS as healthy and slim as they can while muddling through as far as feeding the rest of the family. "Food" and its preparation becomes a source of questioning and recalculating of eating habits that have been in practice for many years before the entrance of the PWS diagnosis.
Take me, for example.
Like a good number of PWS parents, I sneak snacks. I eat stuff I shouldn't, when I know Sophie won't see me. Eating in the late hours of the day when she is definitely in bed is now a bad habit of mine. I sometimes eat when I'm not at all hungry, because if I don't, I know that I'll become hungry in a moment when Sophie should not be eating, and to eat in front of her at that time would be cruel.
Then there is the "recipe collection". I have probably 100 back issues of food-based magazines; "Cooking Light", "Everyday Food", to name a few. There are several stacks of cookbooks on various shelves around the house. I have a binder bursting with several hundred recipes clipped from magazines and printed off from the internet.
But...do I actually "cook", anymore? As in, follow a recipe, make something "from scratch", spend any prolonged time in the kitchen?
Not really, for various PWS-related reasons.
Any extra time spent in the kitchen, when Sophie is home, in problematic. She likes to hang out in the kitchen and sometimes wants to help me, even if what I'm making is really simple. So then I worry, should she even be IN the kitchen at all? If she's watching me warm this up or make that, will she at some point sneak into the kitchen and try to make it herself (because I am ALWAYS telling her that this or that food item, if eaten without cooking it first, will make her very very sick - so as to somehow deter her from eating raw food product. Except then, will she just use her clever brain, take the food anyway, and try to cook it herself??). There is also the concern that, if something is cooking for a few hours and sending tantalizing smells all through the house, does that bother Sophie and cause her added stress? Do I open all the windows to decrease the smells? Should I just not cook or bake much at all?
And then, with all these cookbooks and food magazines and clipped recipes, of course it is now mandatory to consider the calorie-count-per-serving for whatever recipe. Sophie is eight years old now, and with the passing years I have kind of lost my desire to make much of anything - there is no longer any justification for making a recipe "just because it tastes or looks good" or "just because it was a comfort food when I was a kid", if one serving equals 200, 300, 400+ calories. Certainly Sophie's portion can be adjusted so that she can at least have some, and the rest of her meal would be suitably lightened up. That isn't hard to do, and I have certainly done that on occasions when it has been necessary. It gets tiring and depressing, though, to approach every recipe with that precaution in mind. Really, the more recipes I read, I start to question why any recipe, for any main dish, side dish, dessert, whatever, needs to be made with full-fat or full-calorie ingredients. If the population of the U.S. is in the midst of an obesity epidemic, then why does any company or chef or food magazine or cookbook author produce recipes with seemingly no regard for the calorie-count-per-serving? I have looked at recipes where the count is 600 calories-per-serving, and the serving size is one cup. Now, obviously I am not going to make that particular recipe, as that is not healthy for anyone in my house let alone Sophie, plus her portion size for such a recipe would be so minute that it wouldn't even be worth it to put any on her plate. But even though I know right away that I won't be making that recipe, I just have to wonder why anyone would make that recipe. Why put your health at risk for the sake of that plateful of "whatever"? Is it worth it? Why spend the money on the ingredients to make something which, even as it tastes good, is increasing your weight or your risk of heart disease? Why....
And on, and on....all these questions from looking at just one recipe.
Looking at food magazines and cookbooks etc etc is fraught with conflict, questions, self-doubt and second-guessing, anymore. I know of families where the entire family has gone vegetarian/vegan/gluten-free/sugar-free/carb-free/all-or-some-of-the-above, as a result of the PWS diagnosis. One family switched to juiced-everything, and says that not only has this helped their child-with-PWS, the whole family feels so much healthier. It seems inevitable that with the PWS diagnosis, simply walking into one's kitchen or eating anything at all, is an action which is so much less clear-cut than for the "typical" person or family. Food consumption becomes a guilty pleasure, or a hoped-for cure-all for your child's diagnosis, or it's just a every-two-hour-chore with no joy in it at all. I watch cooking shows sometimes and drool, not just because of what is being cooked but because of the person's freedom to cook whatever, without having to agonize over the calories and ingredients of the recipe. The people on the cooking show actually enjoy what they are doing! I'd like to get back to that, somehow. I'd like to be able to cook and bake in my kitchen without feeling like I have to do it in the middle of the night or only when Sophie is at school, so as not to cause her any extra distress.
Well, off to figure out what to make for dinner.... :-).
Later,
Jen
Monday, October 15, 2012
Being still
[Photograph by Linda McCartney, 1996]
The past 8-13 years have been crazy. Having children generally takes a person's life and shakes it...continuously. Any moment where it feels like you've caught up, that things make sense, that you've finally conquered chaos...is fleeting. Add a special-needs diagnosis for your younger child into the mix, and what you have is chaos and stress multiplied.
I came upon the above photograph at some point before the birth of my first child. I think I found it in a magazine, and clipped it to tuck into whatever journal I was using at that point. Little did I know then that this photograph would hint at a stillness which I have yet to recapture, 13 years into the parenting journey. But it is a beautiful image, I think. The background in unfocused of course, but when I look at this photo I envision the environment of the background to be several acres of grass/garden/woods, sloping gently down to a small creek. Just outside the area of this photo is a mug of steaming, freshly-steeped tea. Other than muffled sounds of birds and a breeze from outside, it is absolutely, utterly quiet in the room.
There is stillness in this image. And in contemplating it, there is a stolen moment of time in which to be still.
I am not still very often. That is a very difficult state to achieve for any woman with children, pets, and a house for which they are responsible. When I got up this morning I already had the weight on my head of the list of things which I should do, must do, on and on. For the past 13+ years I have belonged to a group of humans for whom "being still" must be, has to be, a conscious choice. This group of people no longer has the sweet luxury of chunks of completely un-claimed time. The much-celebrated and longed-for "weekend" really has no meaning. Being able to sit down and watch a 2-3 hour-long football game, without interruption, absolutely never happens. Sometimes "being still" means simply being able to stay in one place for several hours, without being called upon every 10-20 minutes (either mentally, or actually) to find something/cook something/clean something/feed someone/tend to someone else's needs.
I came upon the above photograph at some point before the birth of my first child. I think I found it in a magazine, and clipped it to tuck into whatever journal I was using at that point. Little did I know then that this photograph would hint at a stillness which I have yet to recapture, 13 years into the parenting journey. But it is a beautiful image, I think. The background in unfocused of course, but when I look at this photo I envision the environment of the background to be several acres of grass/garden/woods, sloping gently down to a small creek. Just outside the area of this photo is a mug of steaming, freshly-steeped tea. Other than muffled sounds of birds and a breeze from outside, it is absolutely, utterly quiet in the room.
There is stillness in this image. And in contemplating it, there is a stolen moment of time in which to be still.
I am not still very often. That is a very difficult state to achieve for any woman with children, pets, and a house for which they are responsible. When I got up this morning I already had the weight on my head of the list of things which I should do, must do, on and on. For the past 13+ years I have belonged to a group of humans for whom "being still" must be, has to be, a conscious choice. This group of people no longer has the sweet luxury of chunks of completely un-claimed time. The much-celebrated and longed-for "weekend" really has no meaning. Being able to sit down and watch a 2-3 hour-long football game, without interruption, absolutely never happens. Sometimes "being still" means simply being able to stay in one place for several hours, without being called upon every 10-20 minutes (either mentally, or actually) to find something/cook something/clean something/feed someone/tend to someone else's needs.
Do you choose to be still, every so often? What does your stillness look like?
Later,
Jen
Tuesday, October 9, 2012
Things kids need
A new pair of these....
(cha-ching! $130!)
(cha-ching! $130!)
And some of these,
because, you know, that holiday is coming!
because, you know, that holiday is coming!Tuesday, October 2, 2012
I wish I could be That Mom...
You know...THIS mom: "
It's a bird...it's a plane...no, it's SUPERMOM!"
The mom who cooks dinner every day, and vacuums consistently...whose kitchen floor is spotless, and who puts all the laundry away so fast it's like it never was dirty in the first place. The mom who is on top of her family's diet, budget, and everything else AND is in perfect shape/health herself. Now, when I take a deep breath and stop being hard on myself, I am able to remind myself that "SuperMom" doesn't really exist (which is probably why all the Google images of "SuperMom" are either cartoon images like the one above, or staged photographs). But still...
It's a bird...it's a plane...no, it's SUPERMOM!"The mom who cooks dinner every day, and vacuums consistently...whose kitchen floor is spotless, and who puts all the laundry away so fast it's like it never was dirty in the first place. The mom who is on top of her family's diet, budget, and everything else AND is in perfect shape/health herself. Now, when I take a deep breath and stop being hard on myself, I am able to remind myself that "SuperMom" doesn't really exist (which is probably why all the Google images of "SuperMom" are either cartoon images like the one above, or staged photographs). But still...
I should be going to the grocery store today. I'm not sure that's going to happen.
There is a guy coming here tomorrow afternoon, to somehow make the Wi-Fi thing-a-ma-jig work in the house (which will hopefully lead to the Nook working, in the house...which would then lead to decreasing Brad's frustration with technology.) The thing-a-ma-jig is upstairs, by the computer. Thus, I feel like I should clean the upstairs - clothes put away, carpet vacuumed, office cleaned up....I kind of doubt that's going to happen.
The house is just full of...clutter, and/or "things that need doing". Old toys that need sorting. Old clothes that need sorting. A pile, which can only be gone through when S is not home, of school papers about to topple over on the buffet. A collection of "Lustreware" that needs selling. Books that need donating. Paperwork to file, an office to clean. Volunteer work that needs doing, which so often anymore seems to trump almost everything else in terms of claiming my time.
So, I don't know how productive today is going to be. Sigh. Some days are just like that, I guess.
Later,
Jen
Sunday, September 30, 2012
Facebook: One Giant Sociology Project
I often wonder if young Mr. Zuckerberg is aware of what he's created and started, with this Facebook thing in which so many of us participate these days.
Someday...or maybe it's happening now, who knows...some smart sociologist is going to team up with some psychologists and whichever other "____ists" would be interested, and start doing some studies on how the Facebook phenomenon has influenced human interaction.
It has brought on several new verbs, as in "Do you facebook?", and "Can I friend you?". It has most definitely sped up the rate at which relationships are both formed (for better or worse), and fall apart.
Some folks use Facebook as their diary, posting anything and everything about their daily lives, and saying "the heck with you" to anyone who objects.
There are those who firmly believe that Facebook should only be used to positive thoughts and happy news.
The ability to "unfriend" and "block" someone, between one breath and the next, based only on the words seen on a computer screen, can make one's head spin.
And at the same time, I myself have benefited greatly from Facebook, in that it has allowed me and many others in the Prader-Willi Syndrome community to connect with each other. Without Facebook, there is little or no chance I would have linked up with PWS families around the world. Eight years ago, my husband and I knew no-one whose child had been diagnosed with PWS. Now, because of the internet and Facebook, I am linked to 700+ parents/grandparents/caregivers to individuals with PWS, and to several individuals-with-PWS themselves. It is an amazing thing. It is a good thing. I'm thankful for it. I'm sure there are other special-needs and rare-disease communities who have had the same experience.
So, I'll be honest and say that over the past 3 years since I joined Facebook, there have been plenty of days when I have been truly blessed and uplifted by the support provided by friends, family, and acquaintances. At the same time, there have also been plenty of days when the dynamics that happen there have been stressful, and hurtful, and have really made me want to cancel my entire account. I mean, how much can we really know about that person typing those words which appear within seconds right in front of me? Can they be trusted? Who knows....and for the most part, probably not. I've gotten better at trusting my gut-instinct about people who I know only through Facebook; but that takes at least a year of reading their posts. So, even on Facebook, where getting a response from someone can happen so blessedly fast - it takes time before you can really get a sense of even a small part of someone's character.
It will be intertesting to read what the sociologists start telling us, in about 10 years.
Later,
Jen
Someday...or maybe it's happening now, who knows...some smart sociologist is going to team up with some psychologists and whichever other "____ists" would be interested, and start doing some studies on how the Facebook phenomenon has influenced human interaction.
It has brought on several new verbs, as in "Do you facebook?", and "Can I friend you?". It has most definitely sped up the rate at which relationships are both formed (for better or worse), and fall apart.
Some folks use Facebook as their diary, posting anything and everything about their daily lives, and saying "the heck with you" to anyone who objects.
There are those who firmly believe that Facebook should only be used to positive thoughts and happy news.
The ability to "unfriend" and "block" someone, between one breath and the next, based only on the words seen on a computer screen, can make one's head spin.
And at the same time, I myself have benefited greatly from Facebook, in that it has allowed me and many others in the Prader-Willi Syndrome community to connect with each other. Without Facebook, there is little or no chance I would have linked up with PWS families around the world. Eight years ago, my husband and I knew no-one whose child had been diagnosed with PWS. Now, because of the internet and Facebook, I am linked to 700+ parents/grandparents/caregivers to individuals with PWS, and to several individuals-with-PWS themselves. It is an amazing thing. It is a good thing. I'm thankful for it. I'm sure there are other special-needs and rare-disease communities who have had the same experience.
So, I'll be honest and say that over the past 3 years since I joined Facebook, there have been plenty of days when I have been truly blessed and uplifted by the support provided by friends, family, and acquaintances. At the same time, there have also been plenty of days when the dynamics that happen there have been stressful, and hurtful, and have really made me want to cancel my entire account. I mean, how much can we really know about that person typing those words which appear within seconds right in front of me? Can they be trusted? Who knows....and for the most part, probably not. I've gotten better at trusting my gut-instinct about people who I know only through Facebook; but that takes at least a year of reading their posts. So, even on Facebook, where getting a response from someone can happen so blessedly fast - it takes time before you can really get a sense of even a small part of someone's character.
It will be intertesting to read what the sociologists start telling us, in about 10 years.
Later,
Jen
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