Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 In a message dated 3/3/2006 7:21:51 A.M. Eastern Standard Time, peppermint_chey@... writes: Most of the kids here will reach adulthood. they will encounter the same problems as we do. We adults have feelings and want to feel that we can make a positive change on others lives. We all feel really lonely and im sure we all dont care thif you dont know our whole life story of all the crap that went wrong but we like to have constructive conversations too. Chantelle, As the parent of an older CHARGE'r I have something to share with you. My Mark is 22 and is non verbal. He functions at a lower level than you or Chip. There are a lot of times on the list that I fell left out to. We are way past the many surgeries of the younger years and have a whole new set of issues. I know one Mom who no longer is on the list because she felt left out too. Even if I don't respond to you I always red your posts with great interest. And I will confess at times I wish Mark was doing some of the things you are able to do and accomplish. I just wanted to share a viewpoint you might not have considered. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 In a message dated 3/3/2006 7:21:51 A.M. Eastern Standard Time, peppermint_chey@... writes: Most of the kids here will reach adulthood. they will encounter the same problems as we do. We adults have feelings and want to feel that we can make a positive change on others lives. We all feel really lonely and im sure we all dont care thif you dont know our whole life story of all the crap that went wrong but we like to have constructive conversations too. Chantelle, As the parent of an older CHARGE'r I have something to share with you. My Mark is 22 and is non verbal. He functions at a lower level than you or Chip. There are a lot of times on the list that I fell left out to. We are way past the many surgeries of the younger years and have a whole new set of issues. I know one Mom who no longer is on the list because she felt left out too. Even if I don't respond to you I always red your posts with great interest. And I will confess at times I wish Mark was doing some of the things you are able to do and accomplish. I just wanted to share a viewpoint you might not have considered. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 In a message dated 3/3/2006 7:21:51 A.M. Eastern Standard Time, peppermint_chey@... writes: Most of the kids here will reach adulthood. they will encounter the same problems as we do. We adults have feelings and want to feel that we can make a positive change on others lives. We all feel really lonely and im sure we all dont care thif you dont know our whole life story of all the crap that went wrong but we like to have constructive conversations too. Chantelle, As the parent of an older CHARGE'r I have something to share with you. My Mark is 22 and is non verbal. He functions at a lower level than you or Chip. There are a lot of times on the list that I fell left out to. We are way past the many surgeries of the younger years and have a whole new set of issues. I know one Mom who no longer is on the list because she felt left out too. Even if I don't respond to you I always red your posts with great interest. And I will confess at times I wish Mark was doing some of the things you are able to do and accomplish. I just wanted to share a viewpoint you might not have considered. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 , I too, have thought I should go off list. My early years information is old, outdated. I don't remember when Di got her first tooth, or what formulas I pushed thru g-tube- they were good-except for the night I blew the balloon with a grape seed-and at 3am that little balloon sounded like a sonic boom. I just stared at her face in shock waiting for the sign that the most awful thing had just happened. My poor old sleep deprived brain was sure I had just blown up the baby. Most of what I remember were those types of situations, which I figure the young mothers don't need to hear. But by asking questions, and from venturing forth some ideas, I've found I can participate, and that everyone has been most gracious just by ignoring what doesn't apply to, or have meaning for them, and then sharing what might be similar. So, yes, Mark may have different challenges than , or some of the other adult chargers, but learning about the differences is as helpful as learning about the similarities. I know you have 22 years of experience with CHARGE. You can't get any more relevent than that. Did you find the information on HANDLE to be meaningful for Mark? Have you tried similar therapies that either helped or didn't help? Forgive my ignorance-does Mark sign? Is he at home with you every day? Do you still have services, or respite help? There is much you can teach us, and I look forward to learning from you. in Ma. Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12 years now) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Chantelle, Your posts can definitely NOT be described as " meaningless stuff " and let me tell you for sure that you and the older people with CHARGE do make a HUGE contribution to us understanding our younger children and preparing to support them as they grow up. You are also a valued member of this list. Look, you stop posting for a while and you have been missed. What does that say? I think most of us would really love to be able to have more dialogues on the list but it is really hard to respond to everything we would like to because of time constraints. I for one have unread mail creeping up to 300 right now. There are times when we simply have not had the time to read everything never mind to respond. I am also guilty of starring things to remind me to respond and never getting round to it. You kow how it is from when you were moving homes, starting new job etc. Lots to do, little time to do it in. Darn, got sidetracked by shopping and lost my thread. I am sure it was not very thrilling anyway, so you have a good weekend and rest assured no-one wants to ignore anyone. Flo trying to fit everything into a few hours of not being at work and not having children with me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Chantelle, Your posts can definitely NOT be described as " meaningless stuff " and let me tell you for sure that you and the older people with CHARGE do make a HUGE contribution to us understanding our younger children and preparing to support them as they grow up. You are also a valued member of this list. Look, you stop posting for a while and you have been missed. What does that say? I think most of us would really love to be able to have more dialogues on the list but it is really hard to respond to everything we would like to because of time constraints. I for one have unread mail creeping up to 300 right now. There are times when we simply have not had the time to read everything never mind to respond. I am also guilty of starring things to remind me to respond and never getting round to it. You kow how it is from when you were moving homes, starting new job etc. Lots to do, little time to do it in. Darn, got sidetracked by shopping and lost my thread. I am sure it was not very thrilling anyway, so you have a good weekend and rest assured no-one wants to ignore anyone. Flo trying to fit everything into a few hours of not being at work and not having children with me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Chantelle, Your posts can definitely NOT be described as " meaningless stuff " and let me tell you for sure that you and the older people with CHARGE do make a HUGE contribution to us understanding our younger children and preparing to support them as they grow up. You are also a valued member of this list. Look, you stop posting for a while and you have been missed. What does that say? I think most of us would really love to be able to have more dialogues on the list but it is really hard to respond to everything we would like to because of time constraints. I for one have unread mail creeping up to 300 right now. There are times when we simply have not had the time to read everything never mind to respond. I am also guilty of starring things to remind me to respond and never getting round to it. You kow how it is from when you were moving homes, starting new job etc. Lots to do, little time to do it in. Darn, got sidetracked by shopping and lost my thread. I am sure it was not very thrilling anyway, so you have a good weekend and rest assured no-one wants to ignore anyone. Flo trying to fit everything into a few hours of not being at work and not having children with me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Hey Chantelle, Sometimes I feel like I don't know what the answers are when you have questions. I wish I did - that's no excuse for not always replying back though. I don't want you to feel left out -keep posting! I always read and am interested even if I don't always respond! Weir Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers Home: lisaweir@... Work: lisa.weir@... Phone: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Hey Chantelle, Sometimes I feel like I don't know what the answers are when you have questions. I wish I did - that's no excuse for not always replying back though. I don't want you to feel left out -keep posting! I always read and am interested even if I don't always respond! Weir Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers Home: lisaweir@... Work: lisa.weir@... Phone: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Hi Chantelle, Number One-Glad we found you being fine-even if a little hung over. I figured you'd rather just forget about that-you know? LOL. So, I was thinking that there would be new news coming now that the doctor is finally going to help with the osdp (did i get that right)? What would help me tremendously is if you would explain your job to me. All of it. Where do U go, how do U get there, how many hours each week, what to you do when you're there. What do you like about it, what don't you like-I mean EVERYthing!!!! and I are having a really hard time getting anyone to tell us what work opportunities might be available to her, and what training she might need. Also, do you have a job coach. What does she do for you. Does she help- I could go on for days....So, if you're up for it, I am. Thank you so much. in Ma. Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12 years now) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Hi Chantelle, Number One-Glad we found you being fine-even if a little hung over. I figured you'd rather just forget about that-you know? LOL. So, I was thinking that there would be new news coming now that the doctor is finally going to help with the osdp (did i get that right)? What would help me tremendously is if you would explain your job to me. All of it. Where do U go, how do U get there, how many hours each week, what to you do when you're there. What do you like about it, what don't you like-I mean EVERYthing!!!! and I are having a really hard time getting anyone to tell us what work opportunities might be available to her, and what training she might need. Also, do you have a job coach. What does she do for you. Does she help- I could go on for days....So, if you're up for it, I am. Thank you so much. in Ma. Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12 years now) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 and , I am not sure I can quite claim to be a " young mum " at the age of 41 but I can certainly claim to be a mum to a young child with CHARGE. I for one love reading posts from the " older mums and dads " ( tee hee) but rarely feel I have anything useful to offer as in CHARGE terms, I am only 5 years old. All our children have such different issues that anything offered on this list will ring bells with someone, so I don't think anyone is without valuable contribution to make. However, I do appreciate that we are all here to learn as well as to teach, support and receive support, (and to downright have a good moan or brag to people who understand) and that it must sometimes be frustrating for the parents of older children to always be the trail blazers and not have enough people on here who relate to their immediate experiences or who can advise them. This, I am sure, probably applies to the adults with CHARGE too sometimes. Please be assured all of you that we value your input greatly and that we feel for you when you tell your " stories " , it's just that we don't feel quite qualified enough to comment. I have learned much from those who have gone ahead of me. Oh, and , I'm sorry but I did giggle mercilessly about the burst balloon and your thought that the baby had burst. Rambling thanks to a glass of white...... Flo > > , > But by asking questions, and from venturing forth some ideas, I've found I > can participate, and that everyone has been most gracious just by ignoring > what doesn't apply to, or have > meaning for them, and then sharing what might be similar. > So, yes, Mark may have different challenges than , or some of > the other adult chargers, but learning about the differences is as helpful > as learning about the similarities. > I know you have 22 years of experience with CHARGE. You can't get any more > relevent than that. Did you find the information on HANDLE to > be meaningful > for Mark? Have you tried similar therapies that either helped or didn't > help? > Forgive my ignorance-does Mark sign? > Is he at home with you every day? Do you still have services, or respite > help? > There is much you can teach us, and I look forward to learning from you. > in Ma. > Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12 > years now) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 and , I am not sure I can quite claim to be a " young mum " at the age of 41 but I can certainly claim to be a mum to a young child with CHARGE. I for one love reading posts from the " older mums and dads " ( tee hee) but rarely feel I have anything useful to offer as in CHARGE terms, I am only 5 years old. All our children have such different issues that anything offered on this list will ring bells with someone, so I don't think anyone is without valuable contribution to make. However, I do appreciate that we are all here to learn as well as to teach, support and receive support, (and to downright have a good moan or brag to people who understand) and that it must sometimes be frustrating for the parents of older children to always be the trail blazers and not have enough people on here who relate to their immediate experiences or who can advise them. This, I am sure, probably applies to the adults with CHARGE too sometimes. Please be assured all of you that we value your input greatly and that we feel for you when you tell your " stories " , it's just that we don't feel quite qualified enough to comment. I have learned much from those who have gone ahead of me. Oh, and , I'm sorry but I did giggle mercilessly about the burst balloon and your thought that the baby had burst. Rambling thanks to a glass of white...... Flo > > , > But by asking questions, and from venturing forth some ideas, I've found I > can participate, and that everyone has been most gracious just by ignoring > what doesn't apply to, or have > meaning for them, and then sharing what might be similar. > So, yes, Mark may have different challenges than , or some of > the other adult chargers, but learning about the differences is as helpful > as learning about the similarities. > I know you have 22 years of experience with CHARGE. You can't get any more > relevent than that. Did you find the information on HANDLE to > be meaningful > for Mark? Have you tried similar therapies that either helped or didn't > help? > Forgive my ignorance-does Mark sign? > Is he at home with you every day? Do you still have services, or respite > help? > There is much you can teach us, and I look forward to learning from you. > in Ma. > Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12 > years now) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 and , I am not sure I can quite claim to be a " young mum " at the age of 41 but I can certainly claim to be a mum to a young child with CHARGE. I for one love reading posts from the " older mums and dads " ( tee hee) but rarely feel I have anything useful to offer as in CHARGE terms, I am only 5 years old. All our children have such different issues that anything offered on this list will ring bells with someone, so I don't think anyone is without valuable contribution to make. However, I do appreciate that we are all here to learn as well as to teach, support and receive support, (and to downright have a good moan or brag to people who understand) and that it must sometimes be frustrating for the parents of older children to always be the trail blazers and not have enough people on here who relate to their immediate experiences or who can advise them. This, I am sure, probably applies to the adults with CHARGE too sometimes. Please be assured all of you that we value your input greatly and that we feel for you when you tell your " stories " , it's just that we don't feel quite qualified enough to comment. I have learned much from those who have gone ahead of me. Oh, and , I'm sorry but I did giggle mercilessly about the burst balloon and your thought that the baby had burst. Rambling thanks to a glass of white...... Flo > > , > But by asking questions, and from venturing forth some ideas, I've found I > can participate, and that everyone has been most gracious just by ignoring > what doesn't apply to, or have > meaning for them, and then sharing what might be similar. > So, yes, Mark may have different challenges than , or some of > the other adult chargers, but learning about the differences is as helpful > as learning about the similarities. > I know you have 22 years of experience with CHARGE. You can't get any more > relevent than that. Did you find the information on HANDLE to > be meaningful > for Mark? Have you tried similar therapies that either helped or didn't > help? > Forgive my ignorance-does Mark sign? > Is he at home with you every day? Do you still have services, or respite > help? > There is much you can teach us, and I look forward to learning from you. > in Ma. > Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12 > years now) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 , I was responding to Chatelle's e mail of feeling left out. I post often. Mark is still in school special ed and LOVES it. He does sign and has an interpreter at school. He is not real elaborate with signing but does sign all the time now. He is at home with us. He was through multiple surgeries the first few years of life and I pipe in from time to time. It is so special to be able to share all the wisdom we have on this list. I think we ALL are a very special group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 , I was responding to Chatelle's e mail of feeling left out. I post often. Mark is still in school special ed and LOVES it. He does sign and has an interpreter at school. He is not real elaborate with signing but does sign all the time now. He is at home with us. He was through multiple surgeries the first few years of life and I pipe in from time to time. It is so special to be able to share all the wisdom we have on this list. I think we ALL are a very special group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 It was quite hilarious, although I am sure not to you at the time. Kim > Oh, and , I'm sorry but I did giggle mercilessly > about the burst balloon and your thought that the baby had burst. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 It was quite hilarious, although I am sure not to you at the time. Kim > Oh, and , I'm sorry but I did giggle mercilessly > about the burst balloon and your thought that the baby had burst. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 It was quite hilarious, although I am sure not to you at the time. Kim > Oh, and , I'm sorry but I did giggle mercilessly > about the burst balloon and your thought that the baby had burst. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 i love everyone in here xxxxxxxxxxxxxxxx > > It was quite hilarious, although I am sure not to you at the time. Kim > > > > > > Oh, and , I'm sorry but I did giggle mercilessly > > about the burst balloon and your thought that the baby had burst. > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 i love everyone in here xxxxxxxxxxxxxxxx > > It was quite hilarious, although I am sure not to you at the time. Kim > > > > > > Oh, and , I'm sorry but I did giggle mercilessly > > about the burst balloon and your thought that the baby had burst. > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 I guess sometimes if people dont reply its hard to know that posts are actually being read. I guess we just have to remember that people do read, even if they dont post. Belinda > > , > I was responding to Chatelle's e mail of feeling left out. I > post > often. Mark is still in school special ed and LOVES it. He does sign and > has > an interpreter at school. He is not real elaborate with signing but does > sign > all the time now. He is at home with us. He was through multiple > surgeries > the first few years of life and I pipe in from time to time. It is so > special > to be able to share all the wisdom we have on this list. I think we ALL > are a > very special group. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 I guess sometimes if people dont reply its hard to know that posts are actually being read. I guess we just have to remember that people do read, even if they dont post. Belinda > > , > I was responding to Chatelle's e mail of feeling left out. I > post > often. Mark is still in school special ed and LOVES it. He does sign and > has > an interpreter at school. He is not real elaborate with signing but does > sign > all the time now. He is at home with us. He was through multiple > surgeries > the first few years of life and I pipe in from time to time. It is so > special > to be able to share all the wisdom we have on this list. I think we ALL > are a > very special group. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 I guess sometimes if people dont reply its hard to know that posts are actually being read. I guess we just have to remember that people do read, even if they dont post. Belinda > > , > I was responding to Chatelle's e mail of feeling left out. I > post > often. Mark is still in school special ed and LOVES it. He does sign and > has > an interpreter at school. He is not real elaborate with signing but does > sign > all the time now. He is at home with us. He was through multiple > surgeries > the first few years of life and I pipe in from time to time. It is so > special > to be able to share all the wisdom we have on this list. I think we ALL > are a > very special group. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Belinda, You're right! I have so many posts that I can't even begin to think of responding to them all. Chantelle, if I missed responding something to you I am sorry. You are a remarkable woman (as is Bellied, Ellen, ...) who I love to read about. I just love reading posts from or about all the adults on this list. Bonnie, mom to a 23, Patty CHARGE 21, and wife to Quote Link to comment Share on other sites More sharing options...
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