I thought it would be helpful to move this to its own thread. Lil brings up common fears all parents face, not just those facing the risk of HD.
I find it to be a very important subject that I think about just about every day. Am I doing it right? Am I freaking them out? Am I giving them enough information for them to make informed decisions about their futures?

What are your thoughts?

Patty

lilbutrfly21 Wrote:
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> My 17 yr old son is probably going to be tested
> soon and I wanted some guidence on how to tell his
> 15 yr old sister since she also has a risk?!?!?!


Hi Lil.

I think your question got swallowed in the thread.

I feel that honesty is best, and giving kids the information they can handle at their age. 15 is a tough age for girls, even in a family without HD. Consider what you think she knows about HD. Does her affected parent still live with her?
Does she have a good relationship with your son, they might have already talked about it if he is ready to test.
Perhaps she knows some, but is not comfortable approaching you to discuss it, especially if you are the affected parent.

There are some good resources out there. Matty is on here (just1moreperson) and he and some comrades started HDYO.org , specifically to support young people affected by HD. Matty is based in England, but will surely lend some guidance.

Find a time when you can talk openly and calmy. Ask questions about what she knows, and does she wonder about how HD will affect her.

My kids were 6 and 7 when their dad was diagnosed. After a while, they started to ask questions, like how did daddy get HD? or are you going to get it too. I would answer he was born with it, but went no further, they weren't ready for it then. One day my son asked me what genetic means...answer the questions, and let them know that they can always ask more questions until they are satisfied.

two things I promised myself regarding teaching my kids about HD. I will never lie to them, and I will fully disclose their risk before they study genetics at school. HD is commonly used as an example, and I would never want any child to learn of their risk while at school.

Today, Zach 10 has figured out about his 50/50 risk. He said that is one gene from Daddy he really does not want to get. (he already got daddy's freckles) I respond I hope not too, but remember you have many years to live before that, and people are working every day toward a cure. He does not seem to be burdened by his knowledge, so I guess we did OK.

Good Luck.
Patty

I hate to see this post go by the wayside since there are so many with at risk kids including Laura & I. Our son is 20 and our daughter is 21. We couldn’t live with ourselves having them not know as they were getting older and it was freaking us out. It was a secret we kept from them and in hindsight; I think that was the wrong decision. I wished that we had told them much sooner. As it turned out, our daughter had known for a few years prior to us telling her. She was 18-19 or so. She said she had seen some literature or saw a piece of HDSA mail lying around the house and may have seen some HD e-mail when she was borrowing our PC. She also mentioned that it was something she learned about in high school. She even wrote a paper on it. The point is she knew long before we told her so she had to live with not only being at risk but wondering why we were not proactive in discussing it. In the end, with our daughter it was pretty smooth. With our son we really didn’t know how to go about it because he seemed to be living on the edge at that time. There was some depression, trouble in school, failing classes, all the typical stuff teen boys are capable of. Anyway, we just sat him down one day and laid it all out for him. It was awful. He asked if he was at risk and when we answered it seemed like all the life went out of him. I will never forget that moment. It brings a tear to me just recalling the event. Both of them have moved on and seem to doing OK. We don’t discuss their at risk status much. Only touch on stuff like pregnancy and getting tested but not very often. What 20 year old wants to be reminded of that all the time? They are both intelligent enough to know how to reach out for information. Who knows, maybe one day they will actually ask mom or dad for advice. So to answer the question; There is only one way to do it. As a parent you know instinctively how to go about it. Everyone is different. What works for one family might not be the best for another.
Pete