1. Have you told your child about their condition?

Yes. We’ve kept nothing from them.

2. If so, how did you tell them?

Told them that they have CAH which means their adrenal gland doesn’t work right and they need medicine to stay healthy. (the two with CAH are 5 and 9)

3. Did you go into many details? If so, explain.

As much as they could comprehend at their age.

4. Are you an adult with CAH? How were you told of what you had? Was it positive? Negative? Please explain.

Not an adult with CAH.

5. What advice can you give me as the best approach to address the many questions of: Why do I have hair(down there), why do I need to take meds, why do I need tests?

It’s not as much what you say as it is how you say it. If you convey an attitude or worry, excessive concern or even bitterness, that’s the answer they’ll hear. If you convey an attitude of acceptance and note the much worse conditions others have to endure, then they’ll accept their condition in a much more positive way. I recently got a calendar from the Down Syndrome Support group in Tulsa and showed it to my kids and told them what Down’s Syndrome is and how it affects people with it -- then asked them if they would rather have CAH or Down’s Syndrome. They quickly said CAH.

6. Do you think it is the best approach to tell your child in a formal way or an informal way? (i.e. just sort of mention it as they are playing, or sit them down and talk about it).

I generally do both, but probably not as formal as you are maybe suggesting. We do alot of spot education, at meals, during TV time etc. when I explain thing or point out facts. (They enjoyed my explanation of the relative sizes of the earth, the sun and the solar system, which I got from crunching the numbers awhile back. -- which is outline here, but I’ve since learned that many of the more distant measurements were highly speculative and could not be verified.)

7. If you haven’t yet told your child, how do you plan to tell them?

N/A

8. For those of you who have told your child, what do you regret most about your approach and how would you change it or would you do it the same way?

I don’t regret anything about the way I’ve told them. They are both very positive about it.