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re: Interrative CD/PDF (Long) Aug. 2nd, 2008 2:09pm
Ashley has we think now reached his final height (5ft 2") which is my height. Is not very confident in new situations but I think because he is now concentrating in something that he feels passionate about, life has become more relevant to "how he wishes to spend it" rather than reflecting upon what life has handed him in the way of CAH. My main bug bear is getting him to be as inquisitive about his condition as I was initially as his parent when he was diagnosed. Obviously as parents, you approach things differently, finding support with the like minded people, reading information on the net and in medical journals. Your knowledge becomes a little more varied.
My concerns about his non acceptance and preferring to be in the dark with little knowledge sometimes astound me but then reflecting back to when I was his age, I probably most likely would have been the same. I could literally go get print off's from day one of his medical file (which is now bible thick) and slap them in his lap and say, this is all you need to know (and then there is more besides that that medical establishment do not tell you so here is my research on top of all that) but there has to be a quicker way of doing all that which will have relevance to a child and at the same time leave them "informed" and more curious about their bodies and their well-being.
The Visual product was as a means to not just get me through a paper, but make something that is highly relevant to him and others like him as a "taster" for what essentially would be a huge project I guess... tackling other such rare genetic conditions in the same way. Doctors do what they do best, they diagnose, script drugs and provide ongoing outpatient care but they do not "design" or approach things in a Visual way to the patient or parent. With today's technology this is very much a designers and photographers role I feel. But since where and when do Doctors and Designers come together to produce such is more the question at this stage.
