Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 One thing I was reminded off amidst all this talk of a book project...was a book I read soon after was born. It's is called *Parenting a Child with Special Needs: Living with and Loving a Disabled Child by Bernadette <http://www.amazon.co.uk/exec/obidos/search-handle-url/index=books-uk & fiel\ d-author=%2C%20Bernadette/026-2323903-0307602>(Editor) * And it is the result of Parents submissions. It's organised into subject headings like Shock; Grief; Depression; Laughter; Humour, (which I didn't particularly like but) etc under each of these chapters there are 5 or 6 pieces written by parents about their experiences of parenting a disabled / special needs child. They pieces are all very different but loosely reflect the Chapter heading. Presumably someone took overall charge of editing pieces and arranging the format, but the pieces themselves are amazing and inspiring. This book moved me to tears on many occasions, the pieces are short enough that you can dip in and out of the book and many chapters had me feeling " Yes!!! That's how I feel " . Now, this book was written about children with many varied issues and conditions - some physical, some behavioural, etc...some very complex, some less so. But I can imagine a book about Charge Children...if we had that in addition to the Management - a whole book of personal experiences - how great would that be. I'd buy that book! is > > I read something interesting in Time magazine yesterday that may help us > with this book project. I haven't had time to look up more info but > perhaps someone here already knows something. There is something called > a wiki -- it's a website that is able to be modified by anyone. > Companies are using them to have many people working on a mission > statement, policy, etc. If you pass around a word document, it's hard > to keep up with who has the most recent version. The wiki concept is > based on the idea of group intelligence being more than one expert. > > At wikicities.com <http://wikicities.com> you can set up a wiki for > anything. I was picturing > us putting the book on a wiki and then each of us can work on it at any > time. A wiki can go on for a short time or forever. > > Like I said, I haven't went to the website or anything -- just read the > article. But I wanted to share the idea before I forgot! > > Michele W > > > > > 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. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at www.chargesyndrome.org<http://www.chargesyndrome.org>or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Great idea! Weir wrote: > Michele, > I'd love to be a part of that; I think it'd be a neat fundraiser for > the Foundation for us to write a collaborative book about our > experiences and donate all the proceeds to the Foundation/CHARGE > Research... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Kim- We all have it in us. Taking the first step, getting our efforts coordinated, and then realizing that time of completion is not an issue -- these are the things that can get us going rather than just continuing to talk about it. If we used the wiki concept (if it works as I am picturing it) then we can begin, we can each address it as we have time, and we can keep it going as long as we need to in order to get it done. Michele W Kim Lauger wrote: > That sounds awesome - coordinating just between 3 of us and a couple of > reviewers on our parent paper - it does take a lot to make sure all the > changes get into the final document. > > I again lost another night of sleep to write last night - my husband > doesn't > know how I function afterwards, but the getting it done sometimes does > more > good for a body than sleeping, especially if it is actively writing rather > than editing or paying bills. I need to write this weekend too -I am > hopeful I will be able to do some during the day this time and not all at > night. And I wonder how in the midst of knowing how hard it is to > realistically add these things on, the passion says now is the time to > bring > that book to life. I think it is because I just pulled off 's mini > book, plus the thought of collaborating with other parents to round it > out - > I am ready to go. Reality is I will not be writing on that this weekend, > but maybe my writing will make me believe I have it in me to take on a > project like this. > > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Axexis- My favorite has been Changed by a Child by Barbara Gill. It sounds like your book and this one are very similar. Perhaps this would be a good format for us. If we start with Kim's chapter headings as guides, then each post or include our short essay on that subject. And we can add chapters, rearrange how essays are categorized onto chapters, etc. But each person's writing would remain their own -- just going side-by-side with others. And we could support each other in the editing and suggestions for revisions of things that can be written more clearly, etc. Michele W is Wolfe wrote: > One thing I was reminded off amidst all this talk of a book > project...was a > book I read soon after was born. It's is called > > *Parenting a Child with Special Needs: Living with and Loving a Disabled > Child > by Bernadette > <http://www.amazon.co.uk/exec/obidos/search-handle-url/index=books-uk & fiel\ d-author=%2C%20Bernadette/026-2323903-0307602 > <http://www.amazon.co.uk/exec/obidos/search-handle-url/index=books-uk & field-auth\ or=%2C%20Bernadette/026-2323903-0307602>>(Editor) > * > > And it is the result of Parents submissions. It's organised into subject > headings like Shock; Grief; Depression; Laughter; Humour, (which I didn't > particularly like but) etc under each of these chapters there are 5 or 6 > pieces written by parents about their experiences of parenting a > disabled / > special needs child. They pieces are all very different but loosely > reflect > the Chapter heading. > Presumably someone took overall charge of editing pieces and arranging > the > format, but the pieces themselves are amazing and inspiring. This book > moved > me to tears on many occasions, the pieces are short enough that you > can dip > in and out of the book and many chapters had me feeling " Yes!!! That's > how I > feel " . > Now, this book was written about children with many varied issues and > conditions - some physical, some behavioural, etc...some very complex, > some > less so. But I can imagine a book about Charge Children...if we had > that in > addition to the Management - a whole book of personal > experiences - > how great would that be. I'd buy that book! > > is > > > > > > > I read something interesting in Time magazine yesterday that may help us > > with this book project. I haven't had time to look up more info but > > perhaps someone here already knows something. There is something called > > a wiki -- it's a website that is able to be modified by anyone. > > Companies are using them to have many people working on a mission > > statement, policy, etc. If you pass around a word document, it's hard > > to keep up with who has the most recent version. The wiki concept is > > based on the idea of group intelligence being more than one expert. > > > > At wikicities.com <http://wikicities.com> you can set up a wiki for > > anything. I was picturing > > us putting the book on a wiki and then each of us can work on it at any > > time. A wiki can go on for a short time or forever. > > > > Like I said, I haven't went to the website or anything -- just read the > > article. But I wanted to share the idea before I forgot! > > > > Michele W > > > > > > > > > > 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. For CHARGE Syndrome > Canada > > information and membership, please visit > http://www.chargesyndrome.ca, or > > email info@.... > > 7th International > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > > Information will be available at > www.chargesyndrome.org<http://www.chargesyndrome.org>or by calling > 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 I think the book is a great idea!!! I would love to help out in some way too. Mom to Makenna (4) CHaRgE -- Re: book project Great idea! Weir wrote: > Michele, > I'd love to be a part of that; I think it'd be a neat fundraiser for > the Foundation for us to write a collaborative book about our > experiences and donate all the proceeds to the Foundation/CHARGE > Research... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 can we have charger contributions id love to somehow > > I think the book is a great idea!!! I would love to help out in some way > too. > > Mom to Makenna (4) CHaRgE > > -- Re: book project > > Great idea! > > Weir wrote: > > > Michele, > > I'd love to be a part of that; I think it'd be a neat fundraiser for > > the Foundation for us to write a collaborative book about our > > experiences and donate all the proceeds to the Foundation/CHARGE > > Research... > > > > > > > > > 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. For CHARGE Syndrome Canada > http://www.chargesyndrome.ca, or email info@... " >information > and membership, please visit http://www.chargesyndrome.ca, or email > info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at www.chargesyndrome.org<http://www.chargesyndrome.org>or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 If it is our book, it could include anything we want. I'd love to have your input. Kim L > can we have charger contributions id love to somehow > > >> >> I think the book is a great idea!!! I would love to help out in some way >> too. >> >> Mom to Makenna (4) CHaRgE >> >> -- Re: book project >> >> Great idea! >> >> Weir wrote: >> >>> Michele, >>> I'd love to be a part of that; I think it'd be a neat fundraiser for >>> the Foundation for us to write a collaborative book about our >>> experiences and donate all the proceeds to the Foundation/CHARGE >>> Research... >>> >>> >> >> >> >> >> 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. For CHARGE Syndrome Canada >> http://www.chargesyndrome.ca, or email info@... " >information >> and membership, please visit http://www.chargesyndrome.ca, or email >> info@.... >> 7th International >> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. >> Information will be available at >> www.chargesyndrome.org<http://www.chargesyndrome.org>or by calling >> 1-. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 I think it would be necessary for CHARGEr input if we are going to tell the story of CHARGE! Good point! Michele ellen howe wrote: > can we have charger contributions id love to somehow > Quote Link to comment Share on other sites More sharing options...
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