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is that such a book would have it's uses for a certain audience - I suspect adult's are the audience. When such a book or product is in it's manufacturing or creative faze often the author or writer asseses who their audience is going to be. I surmise it is a book written and pitched to parents of children with CAH? Whenever you design something in a designer sense you have to market or pitch it to a very specific audience. From this I have seen that I need to have a very narrow audience for a small project. A lot of official books whist useful and factual would be useful to one audience but may not have covered every single angle from a CAH'er's perspective. You have the logic of left brained ideation where something takes a very logic and academic approach. But it will only be geared to someone academic reading it. Then you have the creative right brainers out there not having anything educational to tap into. As I have not seen the book, visually, I wouldn't know but I guess I am trying to elaborate that different approaches are designed for different interpretations and when all bases are covered, you have more of a wide range of solutions.
It's the small issues that no one ever discusses with regard to CAH that cause the most angst for CAH'ers which ironically are seldom addressed in books or educational products of an academic nature.
Identity - Being different. Hormonal issues as an adult, height and how to deal with it as a young adult. Whilst some may not have this aspect to think about, or have such affect their lives, many do, and it is more of an issue for young male adults with CAH than with female in my opinion as a female can get away with being 5ft 2" but in reality, a male is at the end of the day seen as less of a man and that move from teen (older child) to young adult is often a rocky one. Senseless denying this and saying it is not true, because unfortunately in real life, it is fact - people make judgements on an appearance basis. In some instances within the first 3 seconds of meeting you, your demeanor, your height, your style, your dress affects their perception of you.
Attitude - Which seldom comes from the parent as children and teens form their own identity and move away from the parent. Ashley for example is far more a closed book these days. Does not discuss his issues or problems as openly as he used to. That moving from boy to man well I suspect it is something that is wrapped up with what it is to be a man. It comes from the notion that boys don't cry, boys are tougher, boys become even tougher as they moved to adulthood and far more difficult to read what is occuring. He is just one tough little nut wrapped in a shell and has become very adept at hiding a lot of issues and even at times is reluctant to even discuss ANY issues he does have lately, as he very clearly perceives it as being "namby pamby" I surmise. You would not even know he has CAH.
Having just started a course, naturally with every educational institute as his parent I have always made the teaching staff aware of his condition in case he has some injury whilst on the premises. However, when I mentioned dropping off a Doctors letter to teaching staff and alerting them to his CAH, he rolled his eyes and said he wasnt happy about that at all. Will not wear his medic alert bracelet as he perceives it invites curiosity and he cannot be bothered to go through the rigmarole of explaining why he wears the bracelet. Perceives he would like to blend into the background and be treated "normally."
Shy's away from being educated about CAH as a teen or any aspect of it preferring to close himself off and just pretend it isn't anything serious. It is frustrating to a point... I admire him for being so pro active in that attitude, but at the same time, as a parent waiting for the stage where he wishes to become more aware of his body, his condition and educating himself with it's regard is I think only something that will come when he himself is interested in learning about. It's a worry and obviously as child becomes adult, their wishes and their requests play a part in what you can and cannot do as a parent. I am still his carer and responsible but it's very hard to do things over someone's head, i.e. inform people about things. Somehow it feels almost disrespectful. Again could perceived as treating the young adult as a child and such.
