I have been visiting and using the board for ten years on and off. Some of the post's have been this length or similar in length and it seems others have been read them without fun being poked at them. Given the complexity of CAH naturally, they (posts) can pan out that way. Comments made by Wigan personally I find offensive as if I were any other visitor just finding the board and putting such a concept to board users (CAH parents of children), frankly to receive such a comment, yes, I'd be offended - simply because on "normal" support boards people post supportively do they not? They don't throw jokes in. Is this a support community supported by medical establishment s for one, as a Doctor I would not recommend it when such posts are placed here. Generally people arn't rude, they are factual on kosher sites - welcome all new users. Luckily I know the hierarchy of the board and the nature of the people using such. Had I posted something controversial I could understand it, but I suspect Anon and Wigan are aware of my past use of the board and can't get their mind's around the fact my skills may have improved somewhat or my intellectual levels since earlier posts. One needs obviously to develop a thick skin gaining support from this forum it seems because of such people.
Yes Mary, my son's bones have "fused." No more growth and yes children don't generally stop growing at the age of 16 year old, but we're not referring to the normal scenario with a healthy child are we? That particular problem was not in question though and not something I wish to derive advise about. I merely posted it as I use the boards for the length of time that I have to "update" out of interest. My son is plastered on the header of the board. I gave an image over for the use of it on such a site expecting it to be a civilised support site. I did not give my sons image over for it to be used on a site where people post as above with regard to support of people wh need it. I'd like the image to be removed if this is the type of 'support' people receive please.
As for war and peace, never read the book actually. Couldn't tell you if it was good or bad. Did I mention writing a book? Title of the post is quite clearly "Interractive PDF." If I'm reading a post I don't understand, I generally ask politely for an explanation (if I choose to assist) and if I can't add anything helpful, I generally don't bother these days. I certainly havn't got the time to enter into a debate as to whether my thesis is warranted or will be trying to steal the limelight from the author of a certain book published all over the site. I wasn't aware there is a limit to how many books can be written about CAH or even that once a bok is written it is the be all and end all of books and nothing else needs to be done to fill the gaps.
I think I explained clearly why I havn't read the book enough for you within my post. It's irrelevant to me as I am not writing a book.
Yes PDF's are and can be interractive just as a power points can be interractive. Google it. So often people see something missing and seek to fill the gaps. I I cannot get my head around a concept, I don't diss it. Some of the craziest idea's wind up being useful. I doubt anyone would have imagied back in the 60's that we would all be posting to each other and having support in "cyber space." Along came the birth of the internet! Whose crazy idea was that thanks to Vern and US military and the UK postal service? Takes a team of servers to call it the WWW doesn't it?
Something they could do that will fill the gap - a book is a book. An interractive PDF is a page or two in this case with "images" and a few words, because let's face it, a 6-12 yo may be able to read, but trying to get their heads around anatomy and long words with a complex condition is not all too easy given that childrens intellectual levels differ. They like hands on approach often and need to play as they learn.
Any educational tool only needs the educational skills of the author and research. I have the skills to write a book but it's obviously been done hasn't it? Addresses one niche. Not all.
What I have is a different concept. A valid one - just as valid. May not be useful in terms of using it for just those with CAH except to those it applies to, but may be useful when I start to make interractive PDF's on conditions such as diabetes.
I consulted with a medical colleague in my class about the project and quite to the contrary, as she understands what can be achieved with an interractive PDF (having been studying the same degree for the past two years) she felt it was highly relevant and needed for the age group in mind and that I could tie my thesis in with Early Childhood Education teachers and a medical staff at the campus or another University.
I understand the type of people using the board. Probably past enemies with nothing better to do with their time - i moved on - educated myself - get over it. Sorry I have a paper to get through in the above way and don't have time to deal with people that sit around doing nothing constructive but post anon to place a spanner in the works.
Having been in email contact with the author herself over time years ago, and having a disagreement at one point with said author, I am sure it is some accomplice or some other petty balk at making me feel uncomfortable in what is supposed to be an open minded community to support parents of and people with a "rare" condition. Not outcast by them because they have a disagreement with something or someone at some stage or other.
I must go out and buy War & Peace as I would rather spend the time reading something such as that, than read the book mentioned after it being pitched at me in the manner it is to be blunt.
