Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 , Many, many that we don't hear from I believe. in Ma. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 Stumbled across this blog: http://raphaelincharge.blogspot.com/index.html I don't believe we've heard from/about this family before. INteresting! -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 That is odd. I wonder how many other families are out there that we don't know of. :0) > > Stumbled across this blog: > http://raphaelincharge.blogspot.com/index.html > > I don't believe we've heard from/about this family before. INteresting! > > > -- > " It is far better to grasp the universe as it really is than to persist in > delusion, however satisfying and reassuring. " --Carl Sagan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 I agree, - there are many out there and many probably out there who don't have a diagnosis, but have CHARGE. We're getting there, though. L > > , > Many, many that we don't hear from I believe. > in Ma. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 Those of you without a gmail account wont be able to send a message but im around my appartment most of today. I got a few " chores " to do nothing really major. If anyone without a gmail account would like to send a message, just as me or any one elce on the listserve with a gmail account to copy a message. Im not sure if you have to also have a google blog spot to post or just a gmail account though. Who knows. Hopefully maby they will drop a line or something. Maby they are all ready on the Austrailan listseve though. Dunno. I just thought though maby we should wait to see if they want to join the US list seve cause it might be overwhelming, but on the other hand by reading the blog it seemed they would welcome more resorces. Its up to yourselves Im happy though to copy more messeges though. -- http://spacecatsgarden.blogspot.com/ => My blog space Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 Some families just dont get involved wit teh assocation and stuff....for some reason? I dont think the Oz Association are are of this family Re: Family In Tasmania That is odd. I wonder how many other families are out there that we don't know of. :0) > > Stumbled across this blog: > http://raphaelincharge.blogspot.com/index.html > > I don't believe we've heard from/about this family before. INteresting! > > > -- > " It is far better to grasp the universe as it really is than to persist in > delusion, however satisfying and reassuring. " --Carl Sagan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 yeah i was just reading, sounds like the diagnosis is pretty new.. and that they havent been told about the association Re: Re: Family In Tasmania Those of you without a gmail account wont be able to send a message but im around my appartment most of today. I got a few " chores " to do nothing really major. If anyone without a gmail account would like to send a message, just as me or any one elce on the listserve with a gmail account to copy a message. Im not sure if you have to also have a google blog spot to post or just a gmail account though. Who knows. Hopefully maby they will drop a line or something. Maby they are all ready on the Austrailan listseve though. Dunno. I just thought though maby we should wait to see if they want to join the US list seve cause it might be overwhelming, but on the other hand by reading the blog it seemed they would welcome more resorces. Its up to yourselves Im happy though to copy more messeges though. -- http://spacecatsgarden.blogspot.com/ => My blog space Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 There are probably a lot. Either they don't know about the listserve or aren't comfortable with participating. (mom to Evan, 19 months) Vacca wrote: That is odd. I wonder how many other families are out there that we don't know of. :0) > > Stumbled across this blog: > http://raphaelincharge.blogspot.com/index.html > > I don't believe we've heard from/about this family before. INteresting! > > > -- > " It is far better to grasp the universe as it really is than to persist in > delusion, however satisfying and reassuring. " --Carl Sagan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 Isn't it funny how we begin to think that we are CHARGE - and we must include everyone, of course! It's like in our small town. I think I know just about everyone. Til I meet someone outside my circle. Then I realize there are many circles of people that I am totally unaware of. Same here. We think we must know of every CHARGE family - until we find out about and meet new people. Then we realize there are many out there who aren't a part of our group. Of course, I think anyone involved with CHARGE should join us cuz I can't see how this couldn't be beneficial for all. But - some people don't have internet, some people don't have time, some people just aren't interested. I'm glad to see how much we continually grow though. Michele W __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 lisa yes i havent heard of any chargers in tasie they r infact the first tassi chargers ive heard of there r as u know a few in my area angela being one of them ange we should get on to their blog and tell them bout the assiotion and marie and rob and well think rob would b the closest for them but marie would know hugs ellen > > Isn't it funny how we begin to think that we are CHARGE - and we must > include everyone, of course! It's like in our small town. I think I know > just about everyone. Til I meet someone outside my circle. Then I realize > there are many circles of people that I am totally unaware of. Same here. > We think we must know of every CHARGE family - until we find out about and > meet new people. Then we realize there are many out there who aren't a > part > of our group. > > Of course, I think anyone involved with CHARGE should join us cuz I can't > see how this couldn't be beneficial for all. But - some people don't have > internet, some people don't have time, some people just aren't interested. > > I'm glad to see how much we continually grow though. > > Michele W > > __ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 I am here. I joined 26 Jan 2007 but I have not had time to post here at all. (Shh don't tell anyone I am here I was preparing the Blog to help me with introductions to various organisations but it seems that you found it before I introduced myself here. I only started the blog a few days ago (I have just cheated with the dates to make it look like I started when he was born). My Name is Bartlett, father of Raphael Bartlett who is of course the subject of: http://raphaelincharge.blogspot.com/ I have made contact with The Australian CHARGE association and had email correspondence with Marie and Madelene Rich. They have been very helpful and have offered to send us a package of information which will be gratefully received. I find this format (yahoo groups) a little difficult to follow because of the large volume and I would have thought that a Forum with categories would have been a better way to sort the vast amount of information, make it easier to search, and distribute the administrative overead. http://www.invisionplus.net/ host invision forum boards for free if any moderator is interested in this avenue. > > Stumbled across this blog: > http://raphaelincharge.blogspot.com/index.html > > I don't believe we've heard from/about this family before. INteresting! > > > -- > " It is far better to grasp the universe as it really is than to persist in > delusion, however satisfying and reassuring. " --Carl Sagan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 Hi .. The suggestion of a forum has been raised before, and its been decided that people just dont like change and would prefer to stick with this.... I have thought before it might be good to have a forum AND a list... I have an Invision lifetime licesnce i dont use.... I just have trouble with it. its alot harder to set up then phpbb .. I have some server space too...but i kept putting it off... Belinda CHARGEr > > I am here. I joined 26 Jan 2007 but I have not had time to post here > at all. (Shh don't tell anyone I am here > > I was preparing the Blog to help me with introductions to various > organisations but it seems that you found it before I introduced > myself here. I only started the blog a few days ago (I have just > cheated with the dates to make it look like I started when he was born). > > My Name is Bartlett, father of Raphael Bartlett who is of course > the subject of: http://raphaelincharge.blogspot.com/ > > I have made contact with The Australian CHARGE association and had > email correspondence with Marie and Madelene Rich. They > have been very helpful and have offered to send us a package of > information which will be gratefully received. > > I find this format (yahoo groups) a little difficult to follow because > of the large volume and I would have thought that a Forum with > categories would have been a better way to sort the vast amount of > information, make it easier to search, and distribute the > administrative overead. http://www.invisionplus.net/ host invision > forum boards for free if any moderator is interested in this avenue. > > > > > > > > Stumbled across this blog: > > http://raphaelincharge.blogspot.com/index.html > > > > I don't believe we've heard from/about this family before. INteresting! > > > > > > -- > > " It is far better to grasp the universe as it really is than to > persist in > > delusion, however satisfying and reassuring. " --Carl Sagan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 I actulaly made a forum and added lots another time, but deleted it....I have webspace and the licence...i just need someone to set it up.... > > Hi .. The suggestion of a forum has been raised before, and its been > decided that people just dont like change and would prefer to stick with > this.... > > I have thought before it might be good to have a forum AND a list... > > I have an Invision lifetime licesnce i dont use.... I just have trouble > with it. its alot harder to set up then phpbb .. I have some server space > too...but i kept putting it off... > > Belinda CHARGEr > > > > > > > > > I am here. I joined 26 Jan 2007 but I have not had time to post here > > at all. (Shh don't tell anyone I am here > > > > I was preparing the Blog to help me with introductions to various > > organisations but it seems that you found it before I introduced > > myself here. I only started the blog a few days ago (I have just > > cheated with the dates to make it look like I started when he was born). > > > > My Name is Bartlett, father of Raphael Bartlett who is of course > > the subject of: http://raphaelincharge.blogspot.com/ > > > > I have made contact with The Australian CHARGE association and had > > email correspondence with Marie and Madelene Rich. They > > have been very helpful and have offered to send us a package of > > information which will be gratefully received. > > > > I find this format (yahoo groups) a little difficult to follow because > > of the large volume and I would have thought that a Forum with > > categories would have been a better way to sort the vast amount of > > information, make it easier to search, and distribute the > > administrative overead. http://www.invisionplus.net/ host invision > > forum boards for free if any moderator is interested in this avenue. > > > > > > > > > > > > > > Stumbled across this blog: > > > http://raphaelincharge.blogspot.com/index.html > > > > > > I don't believe we've heard from/about this family before. > > INteresting! > > > > > > > > > -- > > > " It is far better to grasp the universe as it really is than to > > persist in > > > delusion, however satisfying and reassuring. " --Carl Sagan > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 I say hang on to that forum. I forsee yahoo going compleatly whacked. Perhaps you can have lisa as main moderator or something of that sort. I still think the forum method works very well. Maby suggest it when your over at the charge conference, talk to more ppl while your there. I dont know if you remember what Onelist was like but it was more set up to be forum based. Maby what this list needs is something that is inbetween the two. Casey's around a bit, maby talk to her cause she is the one that foune Onelist. I forget the name of it before it became onelist. That was the system we need. And for people not to be so afraid of your idea. Seriously its not hard or complicated to use and its a time saver! Chantelle > > I actulaly made a forum and added lots another time, but deleted it....I > have webspace and the licence...i just need someone to set it up.... > > > > > > Hi .. The suggestion of a forum has been raised before, and its been > > decided that people just dont like change and would prefer to stick with > > this.... > > > > I have thought before it might be good to have a forum AND a list... > > > > I have an Invision lifetime licesnce i dont use.... I just have trouble > > with it. its alot harder to set up then phpbb .. I have some server > space > > too...but i kept putting it off... > > > > Belinda CHARGEr > > > > > > > > > > > > > > > > I am here. I joined 26 Jan 2007 but I have not had time to post here > > > at all. (Shh don't tell anyone I am here > > > > > > I was preparing the Blog to help me with introductions to various > > > organisations but it seems that you found it before I introduced > > > myself here. I only started the blog a few days ago (I have just > > > cheated with the dates to make it look like I started when he was > born). > > > > > > My Name is Bartlett, father of Raphael Bartlett who is of course > > > the subject of: http://raphaelincharge.blogspot.com/ > > > > > > I have made contact with The Australian CHARGE association and had > > > email correspondence with Marie and Madelene Rich. They > > > have been very helpful and have offered to send us a package of > > > information which will be gratefully received. > > > > > > I find this format (yahoo groups) a little difficult to follow because > > > of the large volume and I would have thought that a Forum with > > > categories would have been a better way to sort the vast amount of > > > information, make it easier to search, and distribute the > > > administrative overead. http://www.invisionplus.net/ host invision > > > forum boards for free if any moderator is interested in this avenue. > > > > > > > > > > > > > > > > > > > > Stumbled across this blog: > > > > http://raphaelincharge.blogspot.com/index.html > > > > > > > > I don't believe we've heard from/about this family before. > > > INteresting! > > > > > > > > > > > > -- > > > > " It is far better to grasp the universe as it really is than to > > > persist in > > > > delusion, however satisfying and reassuring. " --Carl Sagan > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 pssst...Chantelle..Maybe ill just set it up and see what happens...hehehehe/. Someone suggested i do that acutally.... I remember someone set up an ezboard like a year ago, but it didnt really wormk. IT needs to be something with its own domain name etc....ill work on it > > I say hang on to that forum. I forsee yahoo going compleatly whacked. > Perhaps you can have lisa as main moderator or something of that sort. I > still think the forum method works very well. Maby suggest it when your > over > at the charge conference, talk to more ppl while your there. I dont know > if > you remember what Onelist was like but it was more set up to be forum > based. > Maby what this list needs is something that is inbetween the two. Casey's > around a bit, maby talk to her cause she is the one that foune Onelist. I > forget the name of it before it became onelist. > > That was the system we need. > > And for people not to be so afraid of your idea. Seriously its not hard or > complicated to use and its a time saver! > > Chantelle > > > On 2/18/07, _Belinda _ <belinda83au@... <belinda83au%40gmail.com>> > wrote: > > > > I actulaly made a forum and added lots another time, but deleted it....I > > have webspace and the licence...i just need someone to set it up.... > > > > On 2/18/07, _Belinda _ <belinda83au@... <belinda83au%40gmail.com>> > wrote: > > > > > > Hi .. The suggestion of a forum has been raised before, and its > been > > > decided that people just dont like change and would prefer to stick > with > > > this.... > > > > > > I have thought before it might be good to have a forum AND a list... > > > > > > I have an Invision lifetime licesnce i dont use.... I just have > trouble > > > with it. its alot harder to set up then phpbb .. I have some server > > space > > > too...but i kept putting it off... > > > > > > Belinda CHARGEr > > > > > > > > > > > > > > > On 2/18/07, Bartlett <paul.bartlett@...<paul.bartlett%40ozemail.com.au>> > wrote: > > > > > > > > I am here. I joined 26 Jan 2007 but I have not had time to post here > > > > at all. (Shh don't tell anyone I am here > > > > > > > > I was preparing the Blog to help me with introductions to various > > > > organisations but it seems that you found it before I introduced > > > > myself here. I only started the blog a few days ago (I have just > > > > cheated with the dates to make it look like I started when he was > > born). > > > > > > > > My Name is Bartlett, father of Raphael Bartlett who is of > course > > > > the subject of: http://raphaelincharge.blogspot.com/ > > > > > > > > I have made contact with The Australian CHARGE association and had > > > > email correspondence with Marie and Madelene Rich. They > > > > have been very helpful and have offered to send us a package of > > > > information which will be gratefully received. > > > > > > > > I find this format (yahoo groups) a little difficult to follow > because > > > > of the large volume and I would have thought that a Forum with > > > > categories would have been a better way to sort the vast amount of > > > > information, make it easier to search, and distribute the > > > > administrative overead. http://www.invisionplus.net/ host invision > > > > forum boards for free if any moderator is interested in this avenue. > > > > > > > > > > > > > > > > > > > > > > > > > > Stumbled across this blog: > > > > > http://raphaelincharge.blogspot.com/index.html > > > > > > > > > > I don't believe we've heard from/about this family before. > > > > INteresting! > > > > > > > > > > > > > > > -- > > > > > " It is far better to grasp the universe as it really is than to > > > > persist in > > > > > delusion, however satisfying and reassuring. " --Carl Sagan > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 hey paul if u want a gmail account to read the charge emails i bulk just tell me and illl invite u > > pssst...Chantelle..Maybe ill just set it up and see what > happens...hehehehe/. Someone suggested i do that acutally.... > > I remember someone set up an ezboard like a year ago, but it didnt really > wormk. IT needs to be something with its own domain name etc....ill work > on > it > > On 2/18/07, Chantelle McLaren <Catfuzz.Caliby@...<Catfuzz.Caliby%40gmail.com>> > wrote: > > > > I say hang on to that forum. I forsee yahoo going compleatly whacked. > > Perhaps you can have lisa as main moderator or something of that sort. I > > still think the forum method works very well. Maby suggest it when your > > over > > at the charge conference, talk to more ppl while your there. I dont know > > if > > you remember what Onelist was like but it was more set up to be forum > > based. > > Maby what this list needs is something that is inbetween the two. > Casey's > > around a bit, maby talk to her cause she is the one that foune Onelist. > I > > forget the name of it before it became onelist. > > > > That was the system we need. > > > > And for people not to be so afraid of your idea. Seriously its not hard > or > > complicated to use and its a time saver! > > > > Chantelle > > > > > > On 2/18/07, _Belinda _ <belinda83au@... <belinda83au%40gmail.com><belinda83au% > 40gmail.com>> > > wrote: > > > > > > I actulaly made a forum and added lots another time, but deleted > it....I > > > have webspace and the licence...i just need someone to set it up.... > > > > > > On 2/18/07, _Belinda _ <belinda83au@...<belinda83au%40gmail.com><belinda83au% > 40gmail.com>> > > wrote: > > > > > > > > Hi .. The suggestion of a forum has been raised before, and its > > been > > > > decided that people just dont like change and would prefer to stick > > with > > > > this.... > > > > > > > > I have thought before it might be good to have a forum AND a list... > > > > > > > > I have an Invision lifetime licesnce i dont use.... I just have > > trouble > > > > with it. its alot harder to set up then phpbb .. I have some server > > > space > > > > too...but i kept putting it off... > > > > > > > > Belinda CHARGEr > > > > > > > > > > > > > > > > > > > > On 2/18/07, Bartlett <paul.bartlett@...<paul.bartlett%40ozemail.com.au> > <paul.bartlett%40ozemail.com.au>> > > wrote: > > > > > > > > > > I am here. I joined 26 Jan 2007 but I have not had time to post > here > > > > > at all. (Shh don't tell anyone I am here > > > > > > > > > > I was preparing the Blog to help me with introductions to various > > > > > organisations but it seems that you found it before I introduced > > > > > myself here. I only started the blog a few days ago (I have just > > > > > cheated with the dates to make it look like I started when he was > > > born). > > > > > > > > > > My Name is Bartlett, father of Raphael Bartlett who is of > > course > > > > > the subject of: http://raphaelincharge.blogspot.com/ > > > > > > > > > > I have made contact with The Australian CHARGE association and had > > > > > email correspondence with Marie and Madelene Rich. They > > > > > have been very helpful and have offered to send us a package of > > > > > information which will be gratefully received. > > > > > > > > > > I find this format (yahoo groups) a little difficult to follow > > because > > > > > of the large volume and I would have thought that a Forum with > > > > > categories would have been a better way to sort the vast amount of > > > > > information, make it easier to search, and distribute the > > > > > administrative overead. http://www.invisionplus.net/ host invision > > > > > forum boards for free if any moderator is interested in this > avenue. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Stumbled across this blog: > > > > > > http://raphaelincharge.blogspot.com/index.html > > > > > > > > > > > > I don't believe we've heard from/about this family before. > > > > > INteresting! > > > > > > > > > > > > > > > > > > -- > > > > > > " It is far better to grasp the universe as it really is than to > > > > > persist in > > > > > > delusion, however satisfying and reassuring. " --Carl Sagan > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 thanks Ellen, but I think I'll try to read the emails online (at least I'll try to read a selection of them anyway). > > hey paul if u want a gmail account to read the charge emails i bulk just > tell me and illl invite u > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 Michele, this is so true!! I went to " Princesses on Ice " on Friday night with my god children. As we were going in, there was a little girl in lovely princess dress who was so clearly CHARGE and I did not know her. I saw her parents, and her grandmother, but have never seen any of them. My godchildren's mother poked me and asked if the little girl had CHARGE ( I was proud of her for noticing and knowing!). I EXPECTED to know them and I EXPECTED them to know me!! So...I fully understand what you mean. pam RE: Re: Family In Tasmania Isn't it funny how we begin to think that we are CHARGE - and we must include everyone, of course! It's like in our small town. I think I know just about everyone. Til I meet someone outside my circle. Then I realize there are many circles of people that I am totally unaware of. Same here. We think we must know of every CHARGE family - until we find out about and meet new people. Then we realize there are many out there who aren't a part of our group. Of course, I think anyone involved with CHARGE should join us cuz I can't see how this couldn't be beneficial for all. But - some people don't have internet, some people don't have time, some people just aren't interested. I'm glad to see how much we continually grow though. Michele W __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 So what did you do Pam?My husband have this all the time! You don't want to offend, but at the same time, what if they don't have a diagnosis? We've never been brave enough to go up and say anything before. I was at a shower a couple of years ago and the hostess was one of my best friends. A little boy there SO had CHARGE. After the shower, I mentioned it to my friend(she knew his moms cousin really well, I did not). She mentioned to her what I had thought and sure enough, they talked to his doctor and he was diagnosed He was around 3 at the time and never had a diagnosis! I also found out the parents weren't too thrilled w/ me that I had " noticed " him, but I thought, " wouldn't you want to know what the heck the full story is of what your child has? " My sister-in-law has gone up to a boys teacher at an all city schools function before and asked if he had CHARGE and sure enough he did. She freaked the teacher out. Also a lady from church went up to a family at a companion dog program and asked if there son had CHARGE because she knew Peyton and they were also freaked out by that fact that someone else knew what their child had. So both not negative experiences, but you could see where it could be negative. Just wondered if anyone else has had experience w/ this. It's a fine line! I know I definitely would feel more comfortable saying something if I had Peyton w/ me. Corrie > > Michele, > this is so true!! > I went to " Princesses on Ice " on Friday night with my god children. As we > were going in, there was a little girl in lovely princess dress who was so > clearly CHARGE and I did not know her. I saw her parents, and her > grandmother, but have never seen any of them. My godchildren's mother poked > me and asked if the little girl had CHARGE ( I was proud of her for noticing > and knowing!). I EXPECTED to know them and I EXPECTED them to know me!! > So...I fully understand what you mean. > pam > > RE: Re: Family In Tasmania > > Isn't it funny how we begin to think that we are CHARGE - and we must > include everyone, of course! It's like in our small town. I think I know > just about everyone. Til I meet someone outside my circle. Then I realize > there are many circles of people that I am totally unaware of. Same here. > We think we must know of every CHARGE family - until we find out about and > meet new people. Then we realize there are many out there who aren't a > part > of our group. > > Of course, I think anyone involved with CHARGE should join us cuz I can't > see how this couldn't be beneficial for all. But - some people don't have > internet, some people don't have time, some people just aren't interested. > > I'm glad to see how much we continually grow though. > > Michele W > > __ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 Corrie, It is a fine line!! For me, because I am not a parent of a child with CHARGE, I would not want to come off as being an " outsider " noticing their child's differences and perhaps offending. And...in this particular instance, there were thousands of small children and to notice her in this crowd, might have freaked them out. So... I smiled nicely, commented on her lovely princess dress (the little girl was all a-gog at the others so she was paying no attention to me) and let it go. I did not mention in my email that she was attached to her ox (w/ LONG tubing so she could move around freely) so she was more visible than she might have been normally, but I do think I would have noticed her anyway, given her precious little face. BUT....I did want to say something and identify myself in this mix!!! I think if this had been a restaurant or park or smaller venue, I might say something, but hard to know. I have noticed kids before and not said anything--I think being a parent might make it less threatening on the other end and like you, if you had Peyton, the intro. would already be made!!! If a stranger came up to you and was not a parent, but started a conversation, how would you feel? pam RE: Re: Family In Tasmania > > Isn't it funny how we begin to think that we are CHARGE - and we must > include everyone, of course! It's like in our small town. I think I know > just about everyone. Til I meet someone outside my circle. Then I realize > there are many circles of people that I am totally unaware of. Same here. > We think we must know of every CHARGE family - until we find out about and > meet new people. Then we realize there are many out there who aren't a > part > of our group. > > Of course, I think anyone involved with CHARGE should join us cuz I can't > see how this couldn't be beneficial for all. But - some people don't have > internet, some people don't have time, some people just aren't interested. > > I'm glad to see how much we continually grow though. > > Michele W > > __ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 Pam, I am always willing to talk about our children. In fact, I would ten times rather have people ask/bring it up than never speak of it. Everyone's different. I think w/ CHARGE being so rare, people are amazed that someone recognizes it. I would be flabbergasted and so excited to have someone who automatically understood. Corrie > > Corrie, > It is a fine line!! For me, because I am not a parent of a child with > CHARGE, I would not want to come off as being an " outsider " noticing their > child's differences and perhaps offending. And...in this particular > instance, there were thousands of small children and to notice her in this > crowd, might have freaked them out. So... I smiled nicely, commented on her > lovely princess dress (the little girl was all a-gog at the others so she > was paying no attention to me) and let it go. I did not mention in my email > that she was attached to her ox (w/ LONG tubing so she could move around > freely) so she was more visible than she might have been normally, but I do > think I would have noticed her anyway, given her precious little face. > BUT....I did want to say something and identify myself in this mix!!! I > think if this had been a restaurant or park or smaller venue, I might say > something, but hard to know. I have noticed kids before and not said > anything--I think being a parent might make it less threatening on the other > end and like you, if you had Peyton, the intro. would already be made!!! > > If a stranger came up to you and was not a parent, but started a > conversation, how would you feel? > pam > > RE: Re: Family In Tasmania > > > > Isn't it funny how we begin to think that we are CHARGE - and we must > > include everyone, of course! It's like in our small town. I think I know > > > just about everyone. Til I meet someone outside my circle. Then I > realize > > there are many circles of people that I am totally unaware of. Same > here. > > We think we must know of every CHARGE family - until we find out about > and > > meet new people. Then we realize there are many out there who aren't a > > part > > of our group. > > > > Of course, I think anyone involved with CHARGE should join us cuz I > can't > > see how this couldn't be beneficial for all. But - some people don't > have > > internet, some people don't have time, some people just aren't > interested. > > > > I'm glad to see how much we continually grow though. > > > > Michele W > > > > __ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 Corrie (and , too), I can imagine you would be excited--I would be the same way, I think! I would love that someone might want to talk about MY child. I think that as a person who is NOT a parent, it might not be seen in quite the same way.. Of course, the people here are so enlightened that you would all probably be excited as you say, Corrie, but those not involved or those wanting to not be any different, it might be seen as an intrusion. Hard to know, and I will try to be very brave the next time it happens and approach the family. I will think of you, Corrie, and report back!! I am basically a very friendly person and commenting to/about the little children I encounter is commonplace for me. NOT doing it is unusual for me so it is a question for myself, as well, as to why I did not say anything. pam RE: Re: Family In Tasmania > > > > Isn't it funny how we begin to think that we are CHARGE - and we must > > include everyone, of course! It's like in our small town. I think I know > > > just about everyone. Til I meet someone outside my circle. Then I > realize > > there are many circles of people that I am totally unaware of. Same > here. > > We think we must know of every CHARGE family - until we find out about > and > > meet new people. Then we realize there are many out there who aren't a > > part > > of our group. > > > > Of course, I think anyone involved with CHARGE should join us cuz I > can't > > see how this couldn't be beneficial for all. But - some people don't > have > > internet, some people don't have time, some people just aren't > interested. > > > > I'm glad to see how much we continually grow though. > > > > Michele W > > > > __ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 I agree. Even if someone came up to me and asked if my son had xyz syndrome (even if they were wrong), it would show that they cared and thought that they might be able to help. I even wouldn't mind if someone just asked me if my son was retarded. I know what the word really means and I can give an honest answer to the question. Although I would probably not ask another person if they (or their relative) was retarded because of the potential social stigma that the other person might associate with the word. Before we had a diagnoses I would have been even more thrilled if someone offered an opinion. Then we could bring this to our doctors (and research it ourselves) to see what they had to say about it. I might open the conversation with something like: " excuse me... I couldn't help notice your son. My son has CHARGE syndrome and your child has some striking similarities to my boy. Does he/she have CHARGE syndrome too? " > > > > > > Michele, > > > this is so true!! > > > I went to " Princesses on Ice " on Friday night with my god children. As > > we > > > were going in, there was a little girl in lovely princess dress who was > > so > > > clearly CHARGE and I did not know her. I saw her parents, and her > > > grandmother, but have never seen any of them. My godchildren's mother > > poked > > > me and asked if the little girl had CHARGE ( I was proud of her for > > noticing > > > and knowing!). I EXPECTED to know them and I EXPECTED them to know me!! > > > So...I fully understand what you mean. > > > pam > > > > > > RE: Re: Family In Tasmania > > > > > > Isn't it funny how we begin to think that we are CHARGE - and we must > > > include everyone, of course! It's like in our small town. I think I know > > > > > just about everyone. Til I meet someone outside my circle. Then I > > realize > > > there are many circles of people that I am totally unaware of. Same > > here. > > > We think we must know of every CHARGE family - until we find out about > > and > > > meet new people. Then we realize there are many out there who aren't a > > > part > > > of our group. > > > > > > Of course, I think anyone involved with CHARGE should join us cuz I > > can't > > > see how this couldn't be beneficial for all. But - some people don't > > have > > > internet, some people don't have time, some people just aren't > > interested. > > > > > > I'm glad to see how much we continually grow though. > > > > > > Michele W > > > > > > __ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 paul pam and corie ive had people coem up to mum and ask if i had downs we never minded coz even though i dotn i am fortunate my cousin has it and if they wanted info mum just gave cams number LOL > > I agree. Even if someone came up to me and asked if my son had xyz > syndrome (even if they were wrong), it would show that they cared and > thought that they might be able to help. I even wouldn't mind if > someone just asked me if my son was retarded. I know what the word > really means and I can give an honest answer to the question. > Although I would probably not ask another person if they (or their > relative) was retarded because of the potential social stigma that the > other person might associate with the word. > > Before we had a diagnoses I would have been even more thrilled if > someone offered an opinion. Then we could bring this to our doctors > (and research it ourselves) to see what they had to say about it. > > I might open the conversation with something like: " excuse me... I > couldn't help notice your son. My son has CHARGE syndrome and your > child has some striking similarities to my boy. Does he/she have > CHARGE syndrome too? " > > > > > > > > > > > > Michele, > > > > this is so true!! > > > > I went to " Princesses on Ice " on Friday night with my god > children. As > > > we > > > > were going in, there was a little girl in lovely princess dress > who was > > > so > > > > clearly CHARGE and I did not know her. I saw her parents, and her > > > > grandmother, but have never seen any of them. My godchildren's > mother > > > poked > > > > me and asked if the little girl had CHARGE ( I was proud of her for > > > noticing > > > > and knowing!). I EXPECTED to know them and I EXPECTED them to > know me!! > > > > So...I fully understand what you mean. > > > > pam > > > > > > > > RE: Re: Family In Tasmania > > > > > > > > Isn't it funny how we begin to think that we are CHARGE - and we > must > > > > include everyone, of course! It's like in our small town. I > think I know > > > > > > > just about everyone. Til I meet someone outside my circle. Then I > > > realize > > > > there are many circles of people that I am totally unaware of. Same > > > here. > > > > We think we must know of every CHARGE family - until we find out > about > > > and > > > > meet new people. Then we realize there are many out there who > aren't a > > > > part > > > > of our group. > > > > > > > > Of course, I think anyone involved with CHARGE should join us cuz I > > > can't > > > > see how this couldn't be beneficial for all. But - some people don't > > > have > > > > internet, some people don't have time, some people just aren't > > > interested. > > > > > > > > I'm glad to see how much we continually grow though. > > > > > > > > Michele W > > > > > > > > __ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 Thank, Ellen. It is interesting to know how people will respond. I have usually allowed myself to talk to parents about their special little ones and not thought too much about it. However, in the midst of so many people it felt odd. However, I also did wonder how they might react and I am not sure I have been that concious of that before. Must have been just a weird moment for me. I was thinking a lot about " If " and that probably is not what I should have been stuck on!! thanks. pam RE: Re: Family In Tasmania > > > > > > > > Isn't it funny how we begin to think that we are CHARGE - and we > must > > > > include everyone, of course! It's like in our small town. I > think I know > > > > > > > just about everyone. Til I meet someone outside my circle. Then I > > > realize > > > > there are many circles of people that I am totally unaware of. Same > > > here. > > > > We think we must know of every CHARGE family - until we find out > about > > > and > > > > meet new people. Then we realize there are many out there who > aren't a > > > > part > > > > of our group. > > > > > > > > Of course, I think anyone involved with CHARGE should join us cuz I > > > can't > > > > see how this couldn't be beneficial for all. But - some people don't > > > have > > > > internet, some people don't have time, some people just aren't > > > interested. > > > > > > > > I'm glad to see how much we continually grow though. > > > > > > > > Michele W > > > > > > > > __ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.