First, I find it interesting that lack family support and understanding comes up on all my various elists. I am on an elist with other single women who have built their families through international adoption.  I am also on a list with others (marrieds and singles) who are adopting a special needs child. I am amazed at how often family, not only doesn’t support, but is out and out opposed to decisions that are carefully made (I’ve never heard of anyone adopting by accident :-)

Concerning CAH -- we, as parents live with it day-in and day-out. Once we get past that initial panic, it becomes a "comfortable" part of our lives. Even if we see the grandparents, aunts, uncles, and cousins often, it is not a part of their everyday life, and it never will be. In times of illness, CAH can often be downright scary. Most of our extended families know this. While this is scary to us -- to them it can be even worse. When people are scared that something bad might happen to someone they love, they can do crazy things -- like pretend the problem doesn’t exist or to unrealistically hope it will go away.

Concerning ambiguous genitalia in our girls. Those of us with effected girls, live with this everyday. When our girls were babies, we changed their diapers, many times everyday. Even though my CAH daughter is 5, I still will often help her bathe. We are all very comfortable with the fact that our girls, really are girls regardless (in spite of?) their genitalia. We know that we need to be comfortable talking about it in order to make sure that they receive the very best and the most appropriate care.

Depending upon the age of our parents and when they (and us) were raised (I’m 46, my folks are in their late 70’s) -- these were things that were absolutely, positively NEVER talked about, except maybe (and that is a big maybe) behind closed doors.  My parents couldn’t even manage to talk to me before I saw "the movie" way back when I was in 5th  (talk about being in shock, I didn’t have a clue). If a parent has a problem just talking about basic birds-and-bees, then I can see why ambiguous genitalia could be a problem. In this situation too, they also don’t want to see their loved one be hurt by what other, thoughtless (less educated?) folks will say. We know how society can treat those who are perceived as being different (especially when that difference might have something sexual about it).

Are any of these things good reasons for not being supportive? In my opinion, no. But I think that we as parents of CAH children need to sometimes remember that others come to CAH and ambiguous genitalia from a different point. And that sometimes this means we need to be a little more tolerant and need to do more education.

By the way, I participate on those other elists because I am in the process of adopting a special needs (possibly CAH) baby from China. My hope is to travel in early fall.

Warm regards,

Janet - proud mom of Olivia (5) CAH, and Ruthie (3) non-CAH