Here you can share your thoughts, experiences, comments, and questions about communicating with children in a family affected by Huntington’s Disease – e.g., what triggered your decision to speak/not to speak with your children about HD, what tips can you give to other families, what resources do you use to help you talk with children, who and what supported you in this process, etc.
This is an online forum with some interesting topics about Huntington’s Disease. In this section, visitors will have the chance to ask questions, share experiences, interact with each other, etc. Here you will find a list of topics where you can add a comment or reply to others.
This is your moment to speak and be heard. Feel free to use your voice!
Privacy and Terms:
- A name and an email address are needed to participate in the forum: If you want to remain anonymous you can use a nickname. Your email is just a procedure, it will remain private and nobody else in the forum will be able to see it.
- Every comment, reply or new topic needs to be approved by a moderator. Your contribution will only be seen after it is approved. We kindly remind you that this is a safe and respectful space, so everyone needs to be careful with the words and messages dropped in the chat
- Any ads will be treated as spam and will be deleted during the moderation process.
Talking with Children about HD
Information is a power especially when it comes to HD because it can give you understanding why your loved ones change in their behaviour and cognitive function. And this is quite important in relation to kids because they are more vulnerable on account of their age.
I think that it is vital to speak about HD with kids. I have grown up in a HD family and there were lots of misunderstanding and disappointment for me as a child because I didn't understand why dad behaves like that and I hated him for that behaviour. But he needed our support and hugs and understanding those times... Understanding it now makes my cry all the time... But there's nobody's fault. We just didn't talk about HD and had no information about it. Mom and grandpa were always afraid to frighten us, to give us stress with this information. And I understand them of course.
But I talk with my kids about HD especially when we are spending time and taking care of my sister in the late stage of HD.
I am a happy owner of 2 nice books for kids about HD. And this is one of the example how you can start talking with a child about HD, just read them one of these books 🙂
One is in English by Jimmy Pollard and the name of the book is "Nana's smile" , the second one is in german - "Paul and die verzauberten Arbeiter" by Gizem Goerme, Selda Gueduek and Gizem Vural.
If you are interested in these books for your kids - I can make a scan and send you by email or you can order them online.