Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 , Well there will be lots of us if you need any help, I am coming with my 14 yr old son (no CHARGE) and if you need anything, let me know. I think if her attention span is fine and she will be okay, by all means bring her to the sessions! ~ 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 Re: conference 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 Lynn, Although it would be wonderful to meet , I can understand why she wouldn't feel a need to come to the conference. However I am delighted that you'll be attending :-) It's only a few months away.... Looking forward to seeing you there, Anne, mom of Penina (CHARGE, 6 1/2) cowtownteach wrote: > , > 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! > > > > ~ > > > 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 April 5, 2003 Report Share Posted April 5, 2003 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 Lynn, I will be the one with the 60 pound dog at my side. I bet ya can find me! Kay She who laughs.... LASTS Re: conference 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 Kay And a great smile on your face, no doubt, because everyone will be so glad to meet you! Penina loves dogs so she will probably approach you by herself. She does understand though that she cannot bother a working dog so she she will probably ask for your permission first! Anne, mom of Penina (CHARGE, 6 1/2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 Hello Anne, The guide dog school I attend permits no petting of guide dogs. I have the kind of dog who tries to pet people and he is more than a handful LOL! If he hasn't caused me to break something by then he will be there with me wagging his long silly tail. The little kids needs to stay clear of that tail cause he might just knock them down! Kay She who laughs.... LASTS Re: Re: conference Kay And a great smile on your face, no doubt, because everyone will be so glad to meet you! Penina loves dogs so she will probably approach you by herself. She does understand though that she cannot bother a working dog so she she will probably ask for your permission first! Anne, mom of Penina (CHARGE, 6 1/2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 Can't wait to see you Kay! ~ 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 Re: conference 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 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 5, 2003 Report Share Posted April 5, 2003 Ah. Thanks for the heads-up. I'll brief Penina. She's really respectful of things like that :-) Anne K Lynd wrote: > Hello Anne, > > The guide dog school I attend permits no petting of guide dogs. I have the kind of dog who tries to pet people and he is more than a handful LOL! If he hasn't caused me to break something by then he will be there with me wagging his long silly tail. The little kids needs to stay clear of that tail cause he might just knock them down! > > Kay > She who laughs.... LASTS > Re: Re: conference > > Kay > > And a great smile on your face, no doubt, because everyone will be so glad to meet you! > > Penina loves dogs so she will probably approach you by herself. She does understand though that she cannot > bother a working dog so she she will probably ask for your permission first! > > Anne, mom of Penina (CHARGE, 6 1/2) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2003 Report Share Posted April 5, 2003 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 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...
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