Guest guest Posted April 3, 2003 Report Share Posted April 3, 2003 Good Morning Everyone! What should I expect and prepare for while at the conference? and I will be there and I am also trying to prepare her for it all, she has never been on a plane nor met anyone else with CHARGE. I can see the jealousy act happening right away, but she needs to learn that she is not always the center of attention. Would it be wise to keep her with me while we are in the sessions? ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 , I would say it would depend on 's attention span for the sessions. Will you have anyone to help you while you are there? ~ Weir Mom to Kennedy, 5yr old CHARGEr, 13, 11, and wife to Graeme Saint , New Brunswick, Canada Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada - http://www.chargesyndrome.ca conference Good Morning Everyone! What should I expect and prepare for while at the conference? and I will be there and I am also trying to prepare her for it all, she has never been on a plane nor met anyone else with CHARGE. I can see the jealousy act happening right away, but she needs to learn that she is not always the center of attention. Would it be wise to keep her with me while we are in the sessions? ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 has a great attention span if you don't make her do anything, she'd be happy if she had something to stim on. Nope, I am on my own! ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 , This will be my first conference too. I am looking forward to putting names faces and real people to the emails here. I will be alone. My 18 year old " mild CHARGER " wants nothing to to with the whole idea. I can't say I blame her. We just found out about CHARGE last summer. She fits all but the " c " but has luckly led a pretty normal life. In spite of 27 surgeries she doesn't think she is " special " If I can help in any way I would be willing to give it a try. Email my home email if you wish. Lynn Ohio Mom to Tom,23, 18 cHARGER, wife to Doug > has a great attention span if you don't make her do > anything, she'd be happy if she had something to stim on. Nope, I am > on my own! > > ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 Anne, Have you been to a conference before? I think someone said there was 500 at the last one. How do you possibly find people you want to meet? Do people wear name tags all weekend? I sure hope so. I am looking forward to being there. I will put together a photo history of and bring it with me. I have seven weeks of teaching left and about 25 IEPs to write. I love my work but spring paper work is exhausting. I look forward to summer vacations but by mid-August I am ready to go back to teaching. This summer we will be getting ready for college. I am so excited and a little aprehensive. Her college is only an hour away from her specialist and hospital. That makes me feel good. Also her boyfriend is also attending University of Akron. He always watches out for her. UofA is and hour and a half away from home so she won't be too far. Lynn > > > has a great attention span if you don't make her do > > > anything, she'd be happy if she had something to stim on. Nope, I > > am > > > on my own! > > > > > > ~ > > > > > > 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 > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 Anne, I teach at Braden Junior High School ( 7 & 8)I teach Special Education. I work with Learning Disabled, Deveopmentally Handicapped and Autistic children that in public school. I only have seven weeks left because the school year ends on June 6th. I have the summer off and return to school August 25th. ( The same day starts college). Don't apologize for getting emotional. That's what parenting is all about. As a parent of a real honest and true miracle child I get emotional all the time. Our son (24) is adopted because I was told by two different doctors after many test that I would never be able to have a baby. What did they know, God had other ideas. When Tom was 5yrs old I gave birth to . I have had the best of both worlds. Adoption and childbirth are both wonderful, each in their own way. My husband and I have been truely blessed. July really isn't that far away. I only live and hour and a half from the Conference. I will be up bright and early on that Friday morning so I can be there for breakfast. Lynn > Hi Lynn, > > Parents / friends or teachers who attend the conference without their people with CHARGE often wear the > pictures! We'd like to know about , partly because she has CHARGE and mostly because she is so > important to you, who have become so important to this list. > > 500 people is not a lot. We do wear name tags, but in 2.5 days we get to know each other quickly. Mealtimes, > milling about in the lobby, breakout groups etc. Last conference I didn't even get a chance to visit with > all the people I had met in previous years... > > I attended the first big CHARGE conference when Penina was 11 months old. I was a mess. But (forgive me > those who have heard this before) I came away from that wonderful weekend with a tremendous sense of hope. > So many families had shown me that there was joy and triumph and success too. Just by having a good time > together. Siblings, grandparents, everyone came together and for the first time I understood that we'd be OK > too. I'm being dramatic but that's how I felt at the time. > > I attended two other big conferences (held every two years) and the Mid-Atlantic regional gathering (a > weekend conference held on alternate years and as well organized as the big ones but more intimate, thanks > to the efforts of the and Bruce and others). And all being well, we don't plan to miss Cleveland > either! > > Not only did I learn from the excellent presenters and friends, I had a chance to exchange ideas and have > fun too. > > It's well worth it. :-) > > I'm pretty sure that you'll pick out Penina without even seeing her name tag! Each one of our CHARGERS has a > distinct personality... > > ---------------- > > I can't image how it feels to send off to college. Wow! I had a major crisis speeding towards > kindergarten two years ago. My baby! > > ---------------- > > Where do you teach and why is there only 7 weeks of teaching left? > > Regards, > > Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 Kay, I agree, A 60 pound dog will be hard to miss. See you there. I too love you signature line!!!!!!!!! Lynn > > > > has a great attention span if you don't make her do > > > > anything, she'd be happy if she had something to stim on. > Nope, I > > > am > > > > on my own! > > > > > > > > ~ > > > > > > > > > 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 > > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > > July 25-27, 2003. Information will be available at our website > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 , I'll try my best to meet you and Penina. I really look forward to July. We don't travel much so I consider this my " summer get away " even though it is only and hour and a half from home. I can't think of people besides family that I would like to get to know. Even though was never medically diagnosed with CHARGE she fits so many of the medical conditions, cHARGE. I have learned so much from the list. I have also learned that no matter how hard it has been for her, she has a mild case compared to most. Thanks for making me feel so at home. Lynn > > I'm pretty sure that you'll pick out Penina without even seeing her name tag! Each one of our CHARGERS has a > distinct personality... > Lynn - > Penina will probably be doing a session on neurosurgery in the lobby - this kid is amazing... she told me about the esophagus when I first met her in Houston when she was about 3 years old I believe! What an inspiration! > ~ Weir > Mom to Kennedy, 5yr old CHARGEr, 13, 11, and wife to Graeme > Saint , New Brunswick, Canada > Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir > CHARGE Syndrome Canada - http://www.chargesyndrome.ca > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Anne, My job IS challenging. Every day is different. I do my best and some days are better than others. Our students have a 185 day school year. Penina goes a lot longer it seems. I have a short memory. Where do you live? Our journey hasn't been near as much as some of the ones I have read about. I feel very very lucky. Lynn > Lynn, > > Sounds challenging! I was curious about the short school year. Penina's school ends until around the 24th > of June, and starts around the 28th of August. (I know the teachers have to clean up after the school year > and prepare for the new year before the children come back). > > What a journey you have been on.... and lived to tell the tale :-) > > > Anne, mom of Penina (CHARGE, 6 1/2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 > Jan, I sure can relate to the SUPRISE !!!! factor. Give a hug for me. Lynn Ohio > Hi Lynn, > > My husband and I also feel truly blessed to be parents. We found out about a > month before our 13th anniversary that we were expecting our first child, > . > > Congratulations on " the best of both worlds. " > > Jan H. mom to , 2 1/2 yr. old CHa?RGE > MN > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2003 Report Share Posted May 1, 2003 Dear , Yes, Kendra and Curt, my husband, and I will be coming. Our older kids, 22 and 25 probably won't be able to come, but they might. It will be great to meet you two. conference , Will you be bringing Kendra to Cleveland? ~, friend to , 22, CHARGE 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 6th International CHARGE Syndrome Conference, Cleveland, Ohio, July 25-27, 2003. Information will be available at our website www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2003 Report Share Posted May 1, 2003 " cries " i wanna go to americaaaaaaaaah, maybe in a coule of years Bel > Dear , > > Yes, Kendra and Curt, my husband, and I will be coming. Our older kids, > 22 and 25 probably won't be able to come, but they might. > > It will be great to meet you two. > > > > conference > > > , > > Will you be bringing Kendra to Cleveland? > > ~, friend to , 22, CHARGE > > > > 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 > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, July > 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
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