On the contrary Aimee, I think a lot of what you day is probably true, but you are an adult and children are simply unable to do all those things. I have said before, and I'll repeat right here that children are learning on an educational level and a social level and it is only when we become adults that we are mature enough to adopt those coping strategies that you outline. Until my son can understand his condition and all the knock on effects, it is unreasonable to treat him like other children of his age, who for the best part are not exposed to the toxic levels of androgen that he is from time to time. It is also unreasonable to expect him to be able to bite his tongue or control his anger when it is quite obviously an imbalance that is affecting him neurologically. Aimee, I know the difference between my son on with good levels and my son when his levels are so ludicrously imbalanced. I as a parent have PATIENCE because I understand. Some parents can be so damn cruel. Right now he has gone SOOOOO quiet on the DEX he's like a little zombie, and is heading in the opposite direction. I know what you saying, Ive said as much myself on my web site:
Ive studied this in great depth. Unfortunately we live in a world that these emotions are unacceptable, whether you have behavioural problem or hormone imbalances or not. But what good is punishing a child that is already feeling bad in himself?????? It is simply going to teach him how unf air the world is. You can't expect a child to snap out of it!! He's not even in control of it to start with!! I won't bore you with my philosophy in all this. Just want to let you that when people criticise my son, it reflects on me and my parenting ability. I believe I have enough to cope with bringing up five children (one with such disability), without people having a lack of understanding. When someone tells you to snap out of it, how are you meant to feel? Believe me....I've had a taste of depression when my son was born (six months of hell infact) and I UNDERSTAND all about the dark places and what it takes to shake yourself free. It takes a lot of self talk, and NO ONE but you can pull yourself out of it. When people say this though, you feel they are being quite blaze and that they have no conception of your pain or how you feel, which infact they don't half the time.
On a different topic, I realise that your parents did their best when they had corrective surgery done for you (or you decided to have this?) However, it is simply a lot more complex than that.
The nearest ever anyone came to cutting my genitals was an episiotomy, and it ruined my sex life for two years. Episiotomy is the nearest I can even compare to having a vagina widened or created. I had to have psychosex therapy. With my fourth child, it was placenta praevia and I had to have a casear. What a joke I thought that after three episiotomies and rough labours, I had to have that procedure done. I prepared my self for the surgery and read books, but NOTHING prepared me for the complete LACK of sensation that I have over my abdomen now as a result of it. In terms of comparing the two surgeries, I believe that Caesareans are performed on a larger scale. I knew many women that had had them and had talked to them before I had mine. Only after did they even mention that THEY TOO had complete sensation loss in the same area. That is to say two inches from the scar in both directions. Some time later (a year) I was removing the oven door to clean inside the oven and the spring loaded clips at either side back and amputated the tip off my right thumb. I received a bad crush injury to the other thumb and it was pierced right through the nail to the other side. The pain was out of this world. The sensation has never returned. I hope that you will therefore understand why I am very cynical where surgery is concerned in such a delicate area now. Because with all the good will in the world, I would have been devastated right now if my 12 year old girl had been born with CAH. I would have quite blindly of had the surgeries. I so much wanted a girl, and I was SO ignorant at that time that anything would have been agreeable. Now I feel differently and there isn't a day that doesn't go by that I feel thankful it didn't happen to her. I DO feel that some surgery is necessary for the sake of practicality. I understand the concept that one can end up voiding from the clitoris which can have more the appearance of a penis, and in those cases I agree that surgery is necessary so that a little girl can truly feel a little girl when going to school. However, in these cases, I feel that the longer it is left before school, the better. The reason I feel this is that the clitoris can enlarge anyway after early surgery due to the inevitable exposure to androgens if levels become imbalanced. How many times have you heard people say that their kids hormones levels are out on the CAH message board? Also, I do not feel that operating on tiny babies with CAH is a sensible thing to do being that they have tiny little body parts and this surgery is far better being left as long as possible.
This and the fact that anything could happen during surgery. However if it is something as simple as an enlarged clitoris, I think it is ludicrous to tamper with such until complete growth has at least been established. To me the benefits of that far outweigh the current way people think in that appearances are far more important than functionality when a girl reaches sexual maturity. Not only this but many CAH women have quite clearly stated that they would have preferred it that they were left alone. I know my daughter doesn't have CAH but I do have experience of a full happy sex life, then one affected by surgery after and a great understanding of CAH. Because of that, I have a great deal of empathy for the women that have had these surgeries and regret them. If it is any consolation, I think your Mother and Father made the right decision. It sounds to me you suffered the toxic effects quite badly to have been virilized to that extent and I can say here, I would have taken the same decision as they did. However, anything less and I would have adopted Danny's attitude. Some girls are just born with slightly virilized or enlarged clitoris and small vagina and to be honest that is like saying all women should have the same size breasts. I have seen your messages on the board and I think you do a good thing in putting the extreme case across. Simply this is enough for parents to behable to make a decision. I am writing an article right now for my web page to make the processes of that easier for parents to deal with. I'd like to day here Aimee that your hormones will never be as balanced as that of someone with healthy adrenal gland. For one, the treatment and tests around CAH are too archaic at this present date to achieve correct growth in some kids nevermind such accuracy for the sake of mental health. It amuses me that the diabetic in effect has a deficiency, but insulin cannot be ingested so has to be injected and they watch their levels far more closely. Ultimately, endocrinologists are only concerned with the physiological aspects and not the psychological aspects mores the pity. They don't see your mental health being as important as your physical health. If they did, they would accept that the only way to achieve such is to perform more tests more frequently. I am trying to advocate for a better treatment for my son and for other children that are born with this condition in the future. Why shouldn't I, because they are more likely to be my grandchildren or future generations aren't they since CAH is genetic. I want a child that is as emotionally happy as he is physically happy with CAH or without it or as near as damn it to it. Therefore if I am angry on your message board, you will understand my frustrations as a parent. I always put myself in Ashley's shoes and wonder what he would do IF he had the intellectual ability to put how he feels into words. If that means being angry and saying my piece......so be it........
Thanks for e mailing
Let's keep it on the board huh!!!!!!!