Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 OK all.. I got it figured out.. just go to the same page as last time.. http://www.geocities.com/Heartland/1220/chat-2.html got a new server and just changed the page Casey Mom to Dawn 21 HH, Ken 10 ADHD, 8 CHARGE ICQ 728514 AIM ZeeCasey CHARGE Web Page: http://www.geocities.com/Heartland/1220 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 Hi!! I am a " new member " to this egroup. I do not know if my emails are going through so thought I would " tag " on your and send it out to see what will happen. I am an interpreter for a CHARGE young person. We have been together for 2 years now and have made great progress. I am concerned, though, as to some behaviors. Do I sometimes expect to much? Are the behaviors his " own " and not a " symptom " of CHARGE? I do not understand CHARGE very well--and maybe not at all---nor does the school (I think). As I have said, we have made great progress even in or vocab.!! Still working on social skills--yet doing better. What are the " out comes " ? Can we control the behaviors? And how do I start? Also on going to the bathroom....we are out of diapers as of maybe 8 weeks now. Doing pretty good except how do I get this young one to let me know when the restroom is needed, other than on scheduled times? If anyone of you could help me---I would greatly appreciate it. I want this life to be as full-filling and meaningfull as I can help to make it. Take care of you--- and thank-you --Becky-- CHAT !!! the latest info > OK all.. I got it figured out.. just go to the same page as last time.. > > http://www.geocities.com/Heartland/1220/chat-2.html > > got a new server and just changed the page > > > Casey > Mom to Dawn 21 HH, Ken 10 ADHD, 8 CHARGE > > ICQ 728514 AIM ZeeCasey > CHARGE Web Page: > http://www.geocities.com/Heartland/1220 > > ------------------------------------------------------------------------ > Good friends, school spirit, hair-dos you'd like to forget. > Classmates.com has them all. And with 4.4 million alumni already > registered, there's a good chance you'll find your friends here: > http://click./1/2623/1/_/22564/_/954635388/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 Becky Read with interest your letter concerning behaviour, my Charge son Larry is 16 and our main area of concern with him and has been for years is making his behaviour more reasonable. I have done lots of research into ways of helping my son with loads of success. I would be glad to be of assistance, look forward to hearing from you. Jan Hewitson Mum to Belinda 18 and Larry16 Mamdurah, Perth, Western Australia. CHAT !!! the latest info > > > > OK all.. I got it figured out.. just go to the same page as last time.. > > > > http://www.geocities.com/Heartland/1220/chat-2.html > > > > got a new server and just changed the page > > > > > > Casey > > Mom to Dawn 21 HH, Ken 10 ADHD, 8 CHARGE > > > > ICQ 728514 AIM ZeeCasey > > CHARGE Web Page: > > http://www.geocities.com/Heartland/1220 > > > > ------------------------------------------------------------------------ > > Good friends, school spirit, hair-dos you'd like to forget. > > Classmates.com has them all. And with 4.4 million alumni already > > registered, there's a good chance you'll find your friends here: > > http://click./1/2623/1/_/22564/_/954635388/ > > ------------------------------------------------------------------------ > > > > For information about the CHARGE Syndrome > > Foundation or to become a member please > > contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > > > > > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > http://click./1/936/1/_/22564/_/954698900/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 Becky, I just read your post. It is wonderful you found this list and are trying to understand your student. But what concerns me is your statement that you do not understand CHARGE and the school does not either. I think the first thing you need to do is to find out how this child fits the criteria of CHARGE and the impact it has on health, learning, education, social needs.... You cannot just look at one aspect. They all tie in together. I used to think Patty was unique, especially her behaviors, until I found all these people. I applaud her tenacity and drive but it can make you nuts. I haven't tried to control her behaviors that much. I found teaching her the appropriate behavior instead of what she was using was better. Sometimes it is a power struggle though. And sometimes it took ages. You have to be strong, yet loving. There is so much you should learn. Get in touch with deaf/blind specialist. Learn more. Everything added together makes the individual. And I found consistency to the be best. Bonnie, Mom to Patty CHARGE 15, Kris 17, and wife to who will be 40 Easter Sunday! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 Becky, Where are you from? Angie mom to 4 children(one charger) and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2000 Report Share Posted April 5, 2000 WOWWWWWWWW!!! So many of you responded to my plea and am over-whelmed!!! THANK-YOU SSOOOOO MUCH!!! I guess I seemed a little evasive b/c of my position as an interpreter. There is soooo much that has to be confidential that I don't know where to turn. I can't help if I can't ask ?s and if I can't say anything, I can't get help....does that make sense?!??? Am I stepping out of bounds---out of role??? I am from Iowa...I am working really hard to help " my " little guy in school. Math is not a favorite subject though he is good with numbers!! What an awesome reader!! I, too, got a chance to be on the e-mail tonight since last I sent my request and there were 114 new e-mails!! WOOOOOOOW!!! I have 64 to go but am tired!! I am tooooooo old to be up this late though I never thought I'd say that!! Some behaviors sometimes seem to me as attention seeking. Yelling when the teachers is busy with others, kicking the table when what seems to like wanting out of work--especially math!! Pounding--whether it be the table, the wall, the floor---yet not really on himself. Sticking out the tongue---but I think that one is for me!! Sometimes he will yell and take off running-----I don't know...not really BAD behaviors yet not exceptable either? I just don't know how much to expect---I think he is very smart myself. I don't know the % of vision...he watches a LOT out of the sides---when people don't think he is looking is when I think he sees the most!! If I make eye contact w/him while interpreting I will " loose " him. But if I watch him out of the side..he will watch me more...almost like he doesn't want me to see him watching me!! He really is cute!! Some days we have quite a " power-struggle " ---some days I even win!! HA! HA!! We weigh about 8#s different....so there is an associate with us a good part of the day. For the most part, I don't manage behaviors, or the " potty " training....I " m trying to work on language and communication which involes the other things! I myself, had not heard of CHARGE until I took this position 2 years ago. This is why I probably don't understand it to a great extent. I have ask for info but seem to not get very far. Perhaps I am not assertive enough to insist. I guess I learn every day as I go and hope I am an asset to the situation of learning. Some days I'd like to take the credit when a few words are put together or conversation is started...but maybe it was the time to learn. I am the first interpreter for this student. " We " no longer have a feeding tube, we use an auditory trainer at school, working on the bathrooming and intrgreting into the classroom. I hope I have not stepped to far out of my role. This is all new to me and I don't want to do something wrong. Again...I thank-you all for helping me...all this from " where are you from? " My life---almost!! Take care of you! --Becky-- Re: CHAT !!! the latest info > Becky, > > Where are you from? > > Angie mom to 4 children(one charger) and wife to > > ------------------------------------------------------------------------ > Get a NextCard Visa, in 30 seconds! > 1. Fill in the brief application > 2. Receive approval decision within 30 seconds > 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > Apply NOW! > http://click./1/975/1/_/22564/_/954802218/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2000 Report Share Posted April 5, 2000 Becky, Sorry it took me so long to get a response to you. My daughter is 13 AND we live in Iowa, just south of Des Moines! She has behaviors that we have dealt with and continue to deal with off and on. She has more at school than at home and I think that is because I understand her better than the school staff. I would love to visit with you about this. I understand needing to maintain confidence. Maybe the family would agree to a meeting and we could all compare notes. Just a thought. It is important that they get the most out of their education and I think it is wonderful that you are here on the list to learn more. E-mail me privately if you would like to visit more and/or would like to meet. Sheryl, Mom to Mitch 14 and 13 CHARGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Bonnie----I received many helps from many of you and again, I am grateful. Yours was the one I was looking for to explain that it is not Charge that I do not understand as I have read a LOT on the symptoms but it is more my students behaviors that I do not understand. I was trying so hard to keep the confidentiality part of my position that I mis-spoke myself. I apologize many times over for the error in my wording. I, too, find consistancy to be my best way in many areas. Sometimes by ignoring small behaviors, they seem to increase yet sometimes its an " oh well " attitude and we go on. I don't know though--at times--if a behavior is " owned " or not. I need to get going but will be back later!! Thanks!! --Becky-- Re: CHAT !!! the latest info > Becky, > I just read your post. It is wonderful you found this list and are > trying to understand your student. But what concerns me is your statement > that you do not understand CHARGE and the school does not either. I think > the first thing you need to do is to find out how this child fits the > criteria of CHARGE and the impact it has on health, learning, education, > social needs.... You cannot just look at one aspect. They all tie in > together. > I used to think Patty was unique, especially her behaviors, until I found > all these people. I applaud her tenacity and drive but it can make you > nuts. I haven't tried to control her behaviors that much. I found teaching > her the appropriate behavior instead of what she was using was better. > Sometimes it is a power struggle though. And sometimes it took ages. You > have to be strong, yet loving. > There is so much you should learn. Get in touch with deaf/blind > specialist. Learn more. Everything added together makes the individual. > And I found consistency to the be best. > > Bonnie, Mom to Patty CHARGE 15, Kris 17, and wife to who will be 40 > Easter Sunday! > > ------------------------------------------------------------------------ > Get a NextCard Visa, in 30 seconds! > 1. Fill in the brief application > 2. Receive approval decision within 30 seconds > 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > Apply NOW! > http://click./1/2646/1/_/22564/_/954758563/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
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