Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 How about services available for kids with charge. Yes it could and SHOULD be country oriented with the basics covered and perhaps ppl from different countries could bring a little bit from each country to put on a table/display. How bout a question and answere period with a bunch of adult chargers (Belinda, me, Chip and who ever of the older chargers are interested in participating. Kinda like a round table discussion where parents who are not on the list/and those on of cource can ask us questions about growing up and issues we have delt with. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 How bout putting a book out on a table for parents to write questions and each day (end of day) there can be a question answere period where these questions can be answered. I will think of more today and post them later. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 " is getting all excited about the conference hehe " " a question answer thing woudl be good chantelel i reckon... > How bout putting a book out on a table for parents to write > questions and each day (end of day) there can be a question answere > period where these questions can be answered. > > I will think of more today and post them later. > > > Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 I'm glad you mentioned the round table discussion idea. That was the most powerful experience for me -- hearing Patty and Kay speak, actually meeting them, and getting a peek into their life. It's was wonderful! I could benefit from you guys at every conference! Michele W Re: conference ideas How about services available for kids with charge. Yes it could and SHOULD be country oriented with the basics covered and perhaps ppl from different countries could bring a little bit from each country to put on a table/display. How bout a question and answere period with a bunch of adult chargers (Belinda, me, Chip and who ever of the older chargers are interested in participating. Kinda like a round table discussion where parents who are not on the list/and those on of cource can ask us questions about growing up and issues we have delt with. Chantelle Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Another good one! As I tell Aubrie, " You're a good thinker! " Then she'll do something and tell me, " Mom, I am a good thinker, aren't I? " Michele W Re: conference ideas How bout putting a book out on a table for parents to write questions and each day (end of day) there can be a question answere period where these questions can be answered. I will think of more today and post them later. Chantelle Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 I would really really like a conference on OCD and CHARGE. This is our biggest issue and probably many of you have the same issues with OCD. I would help out with getting a conference on this topic together. I really really want OCD addressed at the next conference and would be happy to do anything to get it on the board. Debbie Matasker mom to 7 w/CHARGE, andra 4, 9 conference ideas I got my newsletter in the mail and there was a request for ideas for the conference. I'm at a loss, but I know I reallly do have preferences about topics of sessions and ideas for getting us all together. If we were face-to-face, I'd get a conversation going to try to get my brain working in that direction. So... what kinds of things do we need to know about? What ideas do we have for the conference? Time to make our requests or loose the opportunity! My biggest issues right now are expressive written communication, expressive spoken communication, bone conduction aids v air conduction, technology in the classroom (how to begin keyboarding skills in K and 1st grade), hips and loose joints (Aubrie can pop her shoulders out of joint too. And her fingers and hands are equally loose and unstable. How will she ever write? What else will be a problem due to this? Her hips were first to go because of bearing weight while walking. Is something going to come next?), how to begin endo and growth hormone stuff, how to increase weight and growth for an oral eater... I could go on but I'm already tired out from thinking about it. Michele W Aubrie's mom 6 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 ditto!!! maria conference ideas > > > I got my newsletter in the mail and there was a request for ideas for the > conference. I'm at a loss, but I know I reallly do have preferences about > topics of sessions and ideas for getting us all together. If we were > face-to-face, I'd get a conversation going to try to get my brain working in > that direction. So... what kinds of things do we need to know about? What > ideas do we have for the conference? Time to make our requests or loose the > opportunity! > > My biggest issues right now are expressive written communication, expressive > spoken communication, bone conduction aids v air conduction, technology in > the classroom (how to begin keyboarding skills in K and 1st grade), hips and > loose joints (Aubrie can pop her shoulders out of joint too. And her > fingers and hands are equally loose and unstable. How will she ever write? > What else will be a problem due to this? Her hips were first to go because > of bearing weight while walking. Is something going to come next?), how to > begin endo and growth hormone stuff, how to increase weight and growth for > an oral eater... I could go on but I'm already tired out from thinking > about it. > > Michele W > Aubrie's mom 6 yrs > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 WOW, Michele, some of your musings seem like great fodder for a conference, if you want my two cents! pam ps, I laughed out loud at your description of Dr. Bauer not being very interested in Aubrie's necklace!! Some people just have no taste for jewelry! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Good one! OCD, behavioural issues and the pros and cons of various medical treatments for ocd, mp, self abuse, add/h ect. Chantelle > I really > really want OCD addressed at the next conference and would be happy to do > anything to get it on the board. > > Debbie Matasker mom to 7 w/CHARGE, andra 4, 9 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 I think this is a serious need! Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 I s[oke at the Cleveland conference on challenging behaviors of persons with Charge. Re: conference ideas Good one! OCD, behavioural issues and the pros and cons of various medical treatments for ocd, mp, self abuse, add/h ect. Chantelle > I really > really want OCD addressed at the next conference and would be happy to do > anything to get it on the board. > > Debbie Matasker mom to 7 w/CHARGE, andra 4, 9 > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 I spoke at the last Cleveland conference on challenging behaviors of persons with Charge. With Arno de Kort M.D I have produced a cd rom on this issue. With the permission of the parents I am following 3 of the children who are described on the cd rom. I hope to bring " the latest news " on their development to Florida next year. Dr. Jan van Dijk Netherlands Re: conference ideas Good one! OCD, behavioural issues and the pros and cons of various medical treatments for ocd, mp, self abuse, add/h ect. Chantelle > I really > really want OCD addressed at the next conference and would be happy to do > anything to get it on the board. > > Debbie Matasker mom to 7 w/CHARGE, andra 4, 9 > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 I would like to know if anyone is studying the " changes " in behaviors as individuals with CHARGE get older. I have spoken with other parents and it seems that these " behaviors " are intensified sometimes. I wonder if there is anyone also studying the physical brain and it's changes, like the frontal lobe as our kids go through puberty and enter into the adult world. Patty is a remarkable person who has a accomplished much. We have been able to find ways to modify things so she can be independent. BUT, she has OCD, Tourettes, ADD... When she takes her meds religiously she is mostly fine but when she has PMS, (unbelievable PMS!), or isn't taking her meds at the appropriate times she has great difficulties especially with her OCD. I beleive part of it is that she hasn't had the experiance of learning some soial situtaitons. But when she is in the midst of a time with OCD she is like Dr. Jeckel and Mr. Hyde. Also, when she is like that her learning seems to regress. It is weird. It's like she can't think. I worry aboubt her because of her behavioral difficulties. OCD is hard for her. So then I worry about her emotional health. There are changes as the kids age. Tim, if you are reading this can you respond? Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Pms... I get that every month at around say 13th-20th of every month I get wicked cramps. I know now that its not dairy or wheat cause i havnt been eating it much over the last month and I still got really bad this month again. I dont get spotting though, just the cramps every month. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2004 Report Share Posted April 22, 2004 Bonnie: I think we are experiencing what you describe. has been home from Perkins for an extended spring break. She has been in perfect form for the most part. BUT when she is " off " she is really off (must clarify: this has only happened once thus far this vacation). She's only been on hormones for a year or so; don't know if that's part of the problem. But I do know that there have been moments when I've been quite concerned. I must add, however, that my concern pales when compared to just a few months ago. All of that said, something must go on with these kids as they age! I'm hearing too much about sleep problems, etc. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 Dr.van Dijk: We look forward to the possibility that you can once again share with the families and professionals at the next conference!!! I know Weir at CHARGE Syndrome Canada still has a number of the CD's available showing the children and intervention, if any of the Cnd. parents would want to catch up for the next presentation! Great work! Ann Gloyn Specialist teacher Canada > I spoke at the last Cleveland conference on challenging behaviors of > persons with Charge. With Arno de Kort M.D I have produced a cd rom on > this issue. With the permission of the parents I am following 3 of the > children who are described on the cd rom. I hope to bring " the latest > news " on their development to Florida next year. > Dr. Jan van Dijk > Netherlands > Re: conference ideas > > > Good one! OCD, behavioural issues and the pros and cons of various > medical treatments for ocd, mp, self abuse, add/h ect. > > Chantelle > > > I really > > really want OCD addressed at the next conference and would be > happy to do > > anything to get it on the board. > > > > Debbie Matasker mom to 7 w/CHARGE, andra 4, 9 > > > > > > > > Membership of this email support groups does not constitute membership > in the CHARGE Syndrome Foundation. For information about the CHARGE > Syndrome > Foundation or to become a member (and get the newsletter) please contact > marion@c... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website www.chargesyndrome.org or > by calling 1-. In Canada, you may contact CHARGE Syndrome > Canada at 1- (families), visit www.chargesyndrome.ca, or > email info@c... Thank you! > > 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.