The time has come where we feel we need to tell the kids (9yr old girl/6 yr old boy) or at least just open the door to discussion. We want to communicate that daddy is "sick"? has a "condition"? a "disease"?... I want to be sure that any feelings they have that something is going on are validated and open the door to questions.... mostly for my daughter whose relationship with her dad is quite strained.

Any advice is welcome. we want it to be a gentle talk...

I think someone once mentioned a book that helps - if anyone has that title/author I would appreciate it.

Thanks very much!

Hope, I will someday be in your situation. I feel we can wait a bit since my husband has no noticable symptoms. Also my son has some other issues going on. But someday I need to have this talk....it is going to be very hard and I agree I want it to be gentle. I will try to look into this and get back to you (I just googled the stuff below, but haven't checked it out yet). Hopefully someone else can recommend something.
[www.hdac.org]
[www.talkingtokidsabouthd.com]
[hopes.stanford.edu]

Hope, I started the lines after I got my positive results. I had my mother to show some of the things I will be going through one day. My 9 yr old boy at the time took the reins. I told very little and he asked lots of questions. Put two and two together to figure that it is genetic and he might get it. My daughter was 4 at the time she knows the word HD. And she understands more then I thought she would but I dont push them. Kid are so much smarter then we give them credit for. They may already know more then you think. Just dont overload them and let them drive the convo.
Autumn

Thanks so much Eve and Autumn! very helpful

My son is 17, and I'm avoiding talking about like the plague. He knows what it is and what causes it, and he knows the risk. He doesn't ask, and I don't talk about it.

We see his mother. We don't discuss the ramifications.

For now, I like it that way.

Hope I have been open with my daughter, age 5 at time of dad's diagnosis. We told her things she could understand like daddy can't drive cause the doctor said he couldn't, he brain doesn't think fast enough. Each year as she as grown she has heard more and more specific things about the disease and its symptoms. My son is now five and daughter is 11.

Early this winter my daughter found a journal entry I wrote the month my husband was diagnosed. It was full of my own fears and feelings of loss, it really upset her and was the catalyst for me to open up to her. Over the past few months I have slowly and completely opened up to her about HD including her own at risk status which was my biggest fear. She already knew about being at risk before I told her. I didn't make it one overwhelming doom and gloom talk, it was just bits of info here and there. Each little conversation building to the next.

Before I told her I talked to her teacher and the school councilor to make sure they were aware of what was going on and to let me know if she had any problems at school. Our school councilor has had experience with another HD family in the community and was a big help in reaching out to my daughter to make sure she was ok and let her know she had someone she could talk to if needed.

We have had a couple of melt downs about things but I think they are more about the huge progression in symptoms my hubby has had over the last six months and me struggling to it all. As well as typical hormonal problems in a growing girl.

My son is where my daughter was so many years ago, daddy's brain doesn't work right...

Telling my daughter has been a great thing in that we have become closer and she understands both me and her dad better. It has been sad to take away from her youthful innocense and see her be fearful and afraid of what is to come. At this time I don't think I would have done it any other way because I am determined that my kids lives will not be defined or limited by HD and knowledge and support is the only way I know how to do that.